HOSPICE DOCTOR

Short Week

2011-12-30T22:11:00.001-06:00

Because Christmas fell on Sunday this year, many people -- myself included -- got the next day off and worked just four days of the last week of the year. But "Death Takes a Holiday" is a movie title, not a description of what actually happens whether we're working or not. During this short week, I was asked to help with seven patients with life-threatening illness, seven families struggling with mortality during what we lightheartedly call "the holidays":

An 82 year old man, previously healthy, whose wife found him on the floor and unresponsive. He'd sustained a large stroke. After several days in the hospital, his family asked for a feeding tube to be placed. They wanted him to have a shot at rehab. We talked about this at length. They understood my concern that they were betting on a long shot. The next day, he had pneumonia and sepsis and had pulled out the tube. We had another visit, the goal changed, and this proud husband and father moved to the inpatient hospice unit.
A woman in her mid-eighties who had been failing in recent months at a nursing home was admitted to the hospital for pneumonia and heart failure. After a couple of days, her respiratory system gave out. There had been confusion about her so-called "code status," so she was transferred to the ICU as a matter of policy. I met her the next day. She was awake but incoherent, struggling to breathe, and terrified. Her daughter told me of recent and remote family losses -- the patient's great-grand-daughter's friend murdered, a son dying in infancy long ago -- that made it hard to make decisions. Still, she was able to get to a decision to emphasize her mother's comfort exclusively, and she accepted my assurances that comfort was within reach.
An emaciated 60-year-old man transferred to our hospital from a rural nursing home because of wounds on his feet. He had a diagnosis of multiple sclerosis and was full of contractures, his hips and legs bent as far as they would go and stuck that way. The skin on both feet had largely come off, and he was left with non-healing ulcers that bled and were infected, and through which his muscles and tendons could be seen. Because I'm known to have an interest in palliative wound care, I was asked to get involved. I made a few suggestions, but we all knew that his wounds would never heal and that, when he returned home, his obvious neglect would continue.
A pleasant woman in her late eighties whose metastatic lung cancer had been diagnosed just a month ago. She'd rejected even so-called palliative chemotherapy by saying, "I'm an old woman. What's the point?" But she said it with a smile on her face. Admitted to the hospital because her heart failure made breathing difficult, she and her daughter were delighted to talk with me about returning home with hospice, making it possible for her to be relaxed and surrounded by her loved ones.
A young man, just 26 and newly married, whose last two years have been consumed by struggling with a gastrointestinal cancer, initially contained but now returning with a vengeance. He'd spent much of the last three or four months in hospitals, and now he was hospitalized again with escalating pain. A hovering, controlling set of relatives complicated his efforts to cope with his illness and relate to his new wife. We worked on pain -- successfully -- and what might be called "relatives management."
A woman in her mid-fifties who'd spent the last year caring for her mother. Her sense of duty led her to ignore the lump in her breast that broke through the skin, drained and smelled, and caused her much pain. Finally she could ignore it no more. But because of her deep reservations about the health care system, she opted to travel offshore to receive a combination of conventional chemotherapy and various nutritional supplemens that were supposed to strengthen her immune system. Meanwhile her pain, shortness of breath, and nausea all escalated. She arrived at our hospital with a significant symptom burden and much ambivalence about what she should do next. Happily, I was able to relieve much of her physical suffering. Within 24 hours she was pain-free, nausea-free, eating bacon and eggs, and experiencing no drainage or odor from her visible breast cancer. This cleared some emotional space, so to speak, and at the end of the day she and her family had decided on hospice.
Finally, the most remarkable patient of the short week: a 91 year old woman, vigorous and in excellent health, who arrived in the emergency department in the middle of the night with sudden, severe abdominal pain. Thanks to modern imaging technology, it was quickly learned that she had bled from a large tumor in her liver that in turn was a metastasis from a breast cancer -- all of this previously undiagnosed. She moved to ICU where I was asked to see her with children and grand-children in attendance. With a serene and radiant smile she told me that yes, she understood that she was dying and would probably die soon, and no, she didn't want an operation and yes, she'd like to be comfortable and preferably at home. Fourteen hours elapsed between her arrival in the ED and her transfer to the inpatient hospice unit, and two days after that she went home. I told her it had been a privilege to help care for her during this phase of life's journey, and then there were hugs all around.

This is the work that my colleagues around the world and I do every day. Helen Keller once said, "Although the world is full of suffering, it is full also of the overcoming of it." It was a short week but a good week, because I helped overcome more suffering than I caused.

"The richness of palliative care," writes Dr. Geoffrey Dunn, "lies in its recognition of the possible where there is uncertainty." We have to believe that comfort and peace -- for the gravely ill and their families, for the poor and the hungry, for neighbors and peoples wracked by ancient conflict -- are always possible if we take up the responsibility of the overcoming of suffering.

May this new year of 2012 bring you comfort, and peace, and love, and rich, rich possibilities.

The Natural Order of Things

2011-12-18T12:05:00.000-06:00

It's supposed to go like this: you raise children, they grow to adulthood, and you die first. Then they raise their own children, and the cycle repeats. Simple, timeless. But when a child dies, the natural order of things is disrupted. Nothing is the way it's supposed to be, and everyone -- parents, siblings, caregivers -- is forced to grapple for meaning.

Sarah was diagnosed with an impossibly rare form of abdominal cancer when she was 17. She spent two years in treatment while struggling with ever-increasing pain. In addition to the chemo, she had a catheter placed in her spine and a pump implanted under her skin. The pump and catheter bathed her spinal cord with painkillers and local anesthetics. And she had IV painkillers going all the time. Nothing worked to contain the cancer, and nothing worked to dull the pain. Eventually, she was using enough pain medication plus Valium-type drugs that she slept pretty much all the time. She kept getting chemo and kept being admitted to a nearby hospital for pain spiraling out of control. Nothing worked, so six weeks before she died, Sarah's parents elected to enroll her in our hospice program.

Almost immediately Sarah needed admission to our inpatient unit, only hours after her opioid requirement had escalated significantly. Her arms and legs were twitching so hard that I thought she might bounce out of her hospital bed if the rails weren't up. I diagnosed something we call opioid-induced hyperalgesia (which I blogged about three years ago in "The Perils of Arrogance") and treated her with fluids, anti-twitching drugs, and stopping her pain medicine temporarily. She improved in a day or two and eventually went home. Her hospice nurse and I visited several times. She'd recovered enough, her mom and dad told us, to return to being a cranky adolescent -- which they saw as a big improvement.

Six weeks after enrollment, and about ten days after a big 20th birthday party in her own backyard, she returned to the inpatient hospice unit. She was barely conscious and barely breathing. Four hours later she was gone. I put my stethoscope to her silent chest, turned to her family, and said, "I'm sorry for your loss." There were tears and hugs, of course, and they continued at her funeral, which many of our hospice staff attended. Her mother told me later, "You gave us back our daughter for six weeks, and we are grateful."

I've had more trouble writing this post than any other since I began blogging over four years ago. It's not that, as a hospice and palliative medicine specialist, I haven't cared for other young patients (see "Angel" from August 2009), although Sarah has been my youngest. But I, too, have grappled for meaning in this case of a teenager whose life was cut short way too soon. Perhaps it's because I have two daughters only a little older than Sarah. As I cared for her and her family, it was easy -- all too easy -- to imagine myself in their place.

I was glad to know that my team and I gave Sarah and her family a chance to interact for a few short weeks. I can only hope that, given the circumstances under which we met, it was enough. Yet for me her death has left a hole in the universe that has not sealed, an ongoing disruption in the natural order of things.

The Department of Heartfelt Conversations

2011-11-29T23:48:00.000-06:00

Most of the time, the purely medical part of my job -- figuring out pain medicines, coming up with treatment plans for other symptoms that cause suffering for patients with advanced diseases -- isn't that hard. Where it gets difficult is in the conversations, the dialogue with patients and their loved ones about where they stand and what they hope for, the truth-telling that is the essence of the work that I do.

One day last week I had three requests for new consults. All were variations on a theme -- a frail elder with anxious family members (children for two of the patients, a spouse for the third), trying to figure out what was best. One of the leaders in our field has said that the family meeting is the basic procedure in palliative care -- like applying a cast in orthopedics, or putting a tube in the windpipe in anesthesiology. So I had the chance in a single day to do three procedures, three family meetings that were all about helping distressed families navigate the stormy waters of life-limiting illness in 21st century America.

The two daughters of my first patient, who had moderate dementia and a host of other medical issues, wanted to know if Mom could "get better" -- meaning, walk again and relate to the world as she had before a series of recent setbacks. As it happens, one daughter was a lawyer who knew a lot about what's called "elder law." I reviewed Mom's situation, helped the kids to understand that what was lost could not be regained, and encouraged them to focus on what was achievable and dignity-preserving. That same day they met with a hospice representative. Mom was discharged from the hospital and admitted to home hospice a couple of days later.

My second patient was also a mom, an elderly Asian woman with metastatic cancer who had five daughters. They already knew that there was no disease-modifying treatment available. Where they were stuck was IV fluids and whether that treatment would be available if their mother enrolled in hospice. We talked that one through, and I also explained about managing cancer-associated pain. Within 48 hours of my first meeting, the patient declined visibly. She enrolled in hospice as an inpatient and passed away, peacefully and surrounded by her family, a day later.

My third procedure of the day was a long conversation with a loving wife who'd cared for her husband for five years. He had a neurologic illness that resembles Parkinson's disease (the technical name is progressive supranuclear palsy), and in recent weeks he'd lost the ability to swallow and had become much less communicative. His wife had been dressing, feeding, and cleaning her husband with almost no outside help. She considered it her marital duty. What she needed to hear from me was that yes, her husband's last chapters were being written, and yes, there was a path that would allow him to remain at home with extra help for her. He, too, left the hospital and enrolled in hospice at home.

As I reflected on each of these cases, I understood that my main role was to be both a truth-teller and a sounding board. Acknowledging reality is a lot harder than it looks. I think that patients and families sometimes continue with aggressive therapy because they believe the alternative is abandonment. One of my most powerful messages is, "You don't have to do this alone."

Sometimes I want to change the name of my palliative care program to the Department of Heartfelt Conversations, because that's the most common -- and the most challenging -- thing I do.

Adrift with a Diaper Rash

2011-10-30T13:58:00.000-05:00

Gert was beside herself with worry. She felt alone and adrift, unsure of what would happen next. A frail woman in her late eighties, Gert had been diagnosed with multiple sclerosis over 60 years before I met her. Her MS hadn't gotten in her way too much, with long periods of remission punctuated by occasional episodes of spasticity. Four years and two husbands later, she finally lost the ability to walk. At her childrens' urging, she'd moved from her home in another state to an assisted living facility the next town over.

For a few years, Gert was the queen of assisted living. "If anybody needs to know the answer to anything, they just say, 'Ask Gert,'" she proudly told me when we met in her hospital room. Gert had organized the card games and the bingo tournaments. She was a leader in her community, grounded and secure. But a few months ago, things began to go south. Her old doctor retired, and she got a new one with a different practice style. He hospitalized her several times for reasons she still doesn't understand. She developed urinary infections that required repeated courses of antibiotics. She lost interest in eating and in life itself.

One of her sons, who lives where I practice, convinced Gert to move a few weeks before she was admitted once again to our hospital. Now she was in a new facility where she was not the queen. In fact, she didn't know anyone there. She'd had more urinary tract infections requiring hospitalization and then -- in a cruel irony that's all too common these days -- the antibiotic for the UTI allowed a nasty germ called Clostridium difficile ("C diff") to flourish in her colon. So she had intractable diarrhea and was admitted for a different antibiotic to treat that new infection. "Can you do something to help my lady be more comfortable?" the hospitalist asked when he called me. "She's so miserable." She'd been in the hospital five days.

I introduced myself to Gert and explained that one of the jobs of palliative care was to help people relieve pain and other symptoms. Gert was straightforward about her physical discomfort. The diarrhea was letting up, but she had a diaper rash. "My bottom is so sore," she told me. (And it certainly was when I examined her -- beet-red, in fact.) She talked about the difficulty of waiting to be changed, the brusqueness that some hospital staff exhibited, and her feelings of isolation. She wondered alound whether she'd ever see anything of the state where she now resided. "I just don't know what to do," she said several times. When I asked her about her sources of strength, she mentioned her faith. "I'm a very religious person, but I don't belong to a church here."

I said I thought I could help her feel a little better. I would work on the rash and ask a hospital chaplain to come. She thanked me effusively for taking the time to listen to her. I went out to the computer and learned that they hadn't been treating her rash; they were just using a so-called barrier cream to cover it up and, theoretically, not let it get worse. I made one small change, adding a prescription-strength cream that's only slightly different from what you could buy over the counter. Gert's internist and I agreed that she had had her emotional legs kicked out from under her by the illnesses and the relocation. She seemed to have lost all meaning in her life.

When I made rounds the next morning, Gert was a different person. The chaplain hadn't been there yet, but her bottom had started feeling better within hours. She'd passed a solid stool and was anticipating discharge that very day. She was animated and optimistic that things would work out in her new home. I took her hand and said, "Don't take this personally, but I hope I never see you again." We laughed and said good-bye.

In palliative care we are all about relieving suffering at any level. We talk a lot about interdisciplinary teams, advance care planning, and care coordination across multiple settings. For some patients and their families, all of that is needed in large doses. But sometimes, all it takes to relieve suffering is to treat a diaper rash.

A Matter of Faith

2011-07-28T21:46:00.000-05:00

It should come as no surprise that religion and faith often take center stage when someone is facing an advanced illness. Dr. Cicely Saunders, the founder of the modern hospice movement, identified spiritual or existential suffering as one form of pain. Any hospice worthy of the name employs chaplains who are trained to respect all faith traditions (including the lack of faith itself) as they help patients and families find meaning and peace in dying.

They say that God works in mysterious ways. In my role as a hospice and palliative medicine doctor, I recently observed three very different aspects of that mystery at work.

I first met Eleanor, a 70 year old African American woman, when her oncologist asked me to help manage the signficant pain she was having from advanced ovarian cancer. There really weren't any disease-modifying options available, her doctor told me, and he was hoping that Eleanor would soon enroll in hospice. Despite some reservations about pain medication expressed by her husband and children -- "we don't want her to get addicted" -- they accepted my advice, and Eleanor's pain was quickly controlled. She left the hospital smiling and calling me "sweetheart." A few weeks later, though, her pain came roaring back. Her kidneys had quit and her mental status was changed. Tests revealed even more spread of her aggressive tumor.

I had lots of discussions with her husband and her children. They wrestled with two contradictory statements Eleanor had made. They'd heard her say both "I don't want to be on machines" and "don't give up on me." As they struggled with what to do, her son played an increasingly dominant role in the family meetings. "She said 'don't give up on me,'" he repeated, "and I have faith." The family closed ranks behind that position, and so Eleanor got everything we have -- a prolonged ICU stay, several intervals on a ventilator, a brief period of dialysis, and similar interventions. She died in the ICU during a "code blue" when her heart finally stopped.

In Eleanor's case, faith seemed to worsen, not relieve, her suffering. Whether it helped her family find meaning and peace is something I'll never know. But she reminded me of the old line (from the TV show "M*A*S*H," I think) that God does answer all prayers, but sometimes the answer is no.

Faith played out in a different way for Bob, a 60-ish school teacher with stomach cancer. I wrote about Bob in a February 2011 blogpost entitled "Lows and Highs." At the end of a long day, I heard Bob playing guitar and singing, "Lord, I have reverence for you." A few months later, Bob was readmitted to our palliative care floor with cancer pain out of control. He expressed deep faith that he would defeat the cancer and seemed not to hear the message from his oncologist that he would receive no more chemotherapy. Part of Bob's faith was his belief in alternative medicine. Every day he drank large quantitites of a spinach-colored smoothie and swallowed capsules of mushroom extract and tumeric. But he also accepted our help with pain and other symptoms, although not to the full extent that we thought was needed to get him symptom-free. Over a few weeks he faded bit by bit, and in his last few days his wife stopped the supplements, allowed us to use symptom-control drugs at full doses, and enrolled him in hospice. By all accounts his death was a peaceful one.

In Bob's case, faith appeared to be a bridge, a support that allowed him to parse what was happening to him and control what he could control.

A 30 year old with a young wife, young children, and advanced cancer is nothing but a tragedy. But Keith seemed to transcend all that, accepting treatments without complaint but also accepting our help with pain control. When it was clear that death would happen soon, he voiced great satisfaction with the idea that he soon would be face-to-face with Jesus. He was sad about leaving his family behind, but he said he felt blessed by divine love and comforted by the knowledge -- which for him was absolute -- that he would see his wife and daughters again. Sitting by his bedside after he'd lapsed into unconsciousness, Keith's wife said much the same thing. She was proud of his role as husband and father. She, too, was confident that they would see each other again. Keith remained unarousable for several days before his quiet, peaceful passing.

For Keith, it seemed to me, faith was an essential component of his late-life and dying experience. It smoothed the way for him and for his family.

So perhaps it's true that God works in mysterious ways. But my experience as a hospice doctor tells me is that it's our faith in God that works in such varied, unpredictable, and mysterious ways.

If It Were Your Mother

2011-05-14T19:49:00.000-05:00

The ICU called me to participate in a family meeting. An elderly Russian woman had come in for a routine surgical procedure. Now she was fighting for her life. She'd had a cardiac arrest from which she was resuscitated, but the strain was too great for multiple organ systems. Her lungs and kidneys were failing. She had developed a paradoxical problem in which she was bleeding at the same time that her blood was clotting. ("Disseminated intravascular coagulation," or DIC, is its mouthful of a name.) Her husband and two daughters gathered with the medical team in the conference room to review her situation.

Treatment for the clots would make the bleeding worse, the intensivist told her family, and trying to stop the bleeding would accelerate the clotting. She almost surely would never come off the ventilator, at least not for a long time, and that would mean "trach and PEG" -- a hole in her windpipe for the breathing machine, and tube through the abdominal wall into her stomach for artificial feeding. The alternative, we all said, was to shift the goals to comfort care. As the palliative guy in the room, it fell to me to describe what that would look like -- weaning from the ventilator, using morphine-like drugs to ease the work of breathing and relieve pain, probably stopping dialysis, and preparing emotionally as best they could for her death.

Her older daughter, whom I'll call Lena, spoke passionately about her mother's background. Born a Jew in the Soviet Union, she'd overcome hardship and discrimination to become a physician. She emigrated to America and struggled to raise a family and make ends meet, all the while dealing with several chronic health problems that had required multiple hospitalizations. "She is a strong Russian woman," Lena said in her own heavy Russian accent. "I understand what you doctors are saying, but I think my mother is telling me that she wants to keep fighting." Lena looked at me and said, "Doctor, let me ask you this: what would you do if it were your mother?"

Physicians are often advised to avoid or minimize personal disclosure. The line I was taught to say in response to a question about my personal life was, "I don't see how knowing that will help us get you well." As Lena looked me in the eye with fierce determination, I knew that answer wouldn't work. So I said, "I know all about what it's like to be raised by a strong mother." And I told everyone about my own mother, who -- like Lena's mom -- had overcome medical and social adversity to go on to a distinguished career in the health professions. "So I know a lot about strong mothers," I continued, "and there's no doubt in my mind what I would do if it were my mother. I would choose to stop active treatment and instead work to assure her comfort." Lena looked at me again and nodded. We'd come to an understanding. She and her family might not agree with a recommendation for comfort care, but they knew I was telling the truth as I understood it.

After the meeting, the family elected to continue aggressive life support. I checked in from time to time. Lena told me she knew her mother would die, but still she had to try. Her younger daughter -- I'll call her Olga -- informed me privately that she agreed with my recommendations. Olga and her husband had lost a nine-year-old daughter to cancer, she told me, so she knew about comfort care and how helpful it could be.

A week after the family meeting, I was paged to the ICU step-down unit. "Can you come down now?" the nurse asked. "Your patient is here from the ICU, they weaned her off the vent, the family is here, and they want palliative care." I came down. They still had questions -- could she continue to receive dialysis? would she be allowed to eat? -- and I said that I would like to see the patient again. A glance told me everything I needed to know. She appeared to be sipping the air, not really breathing. Her hands and feet were ice-cold and mottled. She was unresponsive. I looked at the daughters and the husband and told them it would not be long. They cried, they held her hand, they spoke to her in Russian. The nurse and I could see her heart rate slowing on the monitor. And then, just like that, she breathed one more time and was gone.

As it happens, I know the Jewish prayer for the dead. "Would you like to say Kaddish?" I asked. "I know there are supposed to be ten people when this prayer is said, but I think God wouldn't mind." They said yes, please, we want to say that prayer. And so we did, the ancient syllables filling the space and, hopefully, easing her passage. The husband and both daughters hugged me and thanked me, no one more forcefully than Lena. We said our good-byes, and I left them to be with the strong Russian woman they loved.

If it were my mother, I'd want her to die peacefully, surrounded by family telling her they loved her. Just like that.

Too Little, Too Late

2011-04-18T22:44:00.000-05:00

Rosemary was 88 years old when she was admitted from the nursing home straight to our ICU. She'd aspirated her food again (it seems she was being fed while lying flat on her back) and had pneumonia again. This was a recurring theme over the last couple of years. Her other medical problems included longstanding lung disease and a less than perfectly functioning heart valve.

Rosemary had done her homework and signed an advance directive. We had a copy of it already scanned into her electronic chart. It said that she didn't want her life prolonged if the burden of the treatment outweighed the likely benefit. Rosemary directed her surrogate -- the "power of attorney" who got to make decisions on her behalf -- to take into account, among other things, the cost of life-prolonging therapy and the amount of suffering she'd have to endure.

There's no evidence that anyone looked at the document and no evidence that her family took her wishes into account. The ICU team practiced excellent, but conventional, medicine. She was placed on BiPAP -- a tight-fitting mask that helps push air in and out of your lungs -- and antibiotics. She rallied and went to a regular floor, but within a day or two her lungs and kidneys began to fail. So back to the ICU she went on her third day in the hospital. Now, someone did actually talk with her family and made her DNR -- if her heart stopped she'd be allowed a natural death. And the ICU physician recorded a conversation in which he advised that Rosemary had more than a 90% chance of dying. But her kidneys were failing. So the kidney doctor came, and before much time had passed Rosemary was getting dialysis. A cardiologist was asked whether she would benefit from an attempt to open up her damaged heart valve. (Thankfully, she said no.) And of course she was back on BiPAP and antibiotics and all the rest. As her conditioned worsened, the intensity of her treatment increased. On hospital day #10 someone wrote that the family was "considering a palliative approach." I was called in the evening and asked to see the patient the next day. But she died at seven o'clock in the morning on her eleventh hospital day.

I reviewed the medical record, and I was struck by an important omission. I could find Rosemary's x-rays, and her lab tests, and a meticulous record of antibiotics and all sorts of other medications she had received. I could easily locate and follow the biological reasoning of the kidney specialist who'd recommended dialysis, and I understood why the cardiologist said no to a valve-opening procedure. But nowhere in the record could I find Rosemary. I couldn't figure out what kind of a person she'd been, what mattered to her (apart from the legalese of her advance directive), what she cared about. There wasn't a single word about what her family felt or how they saw things. There was no answer to the most important question a surrogate faces: "What do you think Rosemary would want if she could speak for herself?"

As a palliative medicine specialist, all I have about this case are "why" questions. Why were Rosemary's wishes not acknowledged and taken into account? Why would anyone even offer dialysis to a patient already felt to have nine chances out of ten of not surviving this hospitalization? Why didn't the DNR discussion expand to a broader dialogue on what was the most compassionate and humane thing to do? Why did the doctors pretend they could reverse Rosemary's many medical problems when they knew they couldn't? And -- at the risk of appearing self-serving -- why did they wait so long to call for a palliative care consult? One of our strengths is helping patients and their loved ones identify their goals and then make informed treatment decisions based on those goals.

We have to be honest about the information gap in medicine. Even in the era of the Internet and Twitter, doctors still hold the cards because of what they know and how they present things. A recent issue of the journal Health Affairs described this dynamic in an article entitled "Driven to Dialysis? A Very Sick Nonagenarian Develops Kidney Failure." I think it should be required reading for all surrogates and persons holding health care powers of attorney -- not for the specifics of dialysis, but for how the health care system slants inexorably toward aggressive intervention regardless of the context.

The other day we had something called National Health Care Decisions Day in America. It was a day designed to get people to "have the talk," to discuss with their loved ones what mattered to them most in the event they got really sick. I don't know what happened in Rosemary's life when she signed her advance directive. I don't know if she and her family talked, and if they did, how that conversation went. I do know that signing a paper is not enough. Doctors have to read it, and surrogates have to advocate for it. That this patient's story is so typical is part of what ails the American health care system.

In the middle of the testing, and the dialyzing, and the BiPAP'ing, and the consulting, one question remained unanswered:

Where was Rosemary?

Dumb Luck

2011-03-20T17:58:00.000-05:00

Richard was 69 years old, and he'd been in the hospital for 69 days when we first met. What had started as a routine operation turned into an up-and-down, lengthy hospitalization with three or four round trips from the ICU to the floor and back again. Along the way his wife, acting as his surrogate decision-maker when he was too sick to decide for himself, revoked his DNR status and implored the doctors to do everything they could. And they did, to no avail. Richard was on a ventilator a couple of times. He had several attempts to close his surgical incision, which had developed the nasty habit of popping back open -- dehiscence, we call that -- and setting the stage for infections that couldn't be cleared with multiple antibiotics. His kidneys were shot, and he appeared to be bleeding internally. Everyone but Richard's family -- and presumably, Richard himself -- realized that he was going to die in the hospital. The doctors and nurses in the ICU were hoping to stop what they thought was futile treatment and shift the focus to making him comfortable.

It was his surgeon, broken-hearted at the thought of losing his patient, who asked me to get involved. "Don't make things too complicated," he warned me. "These are simple, unsophisticated folks from the country. They don't understand much, and they're completely unrealistic about his chances for recovery."

Over the years I've learned not to make assumptions about what patients and families do or don't know or what they can or cannot understand. There are a few good rules of thumb about family meetings: Let the family do the talking. Explore what they already believe before delivering bad news. Make room for emotions. But every family meeting is different because every family reacts to serious illness in a loved one in its own way. The scientist Louis Pasteur said, "Chance favors the prepared mind." I try to go into family meetings prepared to be fully present, hoping to respond appropriately to whatever comes up.

I entered Richard's ICU room and, as is my habit, stood on the right side of the bed and put my right hand over his. He was awake and looked terrified. His wife and one of his five sons were in the room. I introduced myself and asked Richard how he was feeling. He answered, "I love Jesus I love Jesus I love Jesus I love Jesus I love Jesus."

This was not the response I was expecting. I didn't know how to answer, but I leaned forward to make better eye contact and said, "I'm not an expert, but I'm sure that Jesus loves you, too." Richard said, "I love God I love God I love God I love God I love God." All I could say in reply was, "and I'm sure God loves you, too." And then Richard said, "What have I done what have I done what have I done what have I done what have I done?"

The light went on inside my head. I leaned forward some more to get our faces closer together. "You didn't do anything," I said, still holding his hand. "You just got sick. And then you got a lot sicker than anyone expected. That's all. It's nobody's fault. You didn't do anything." Richard nodded and closed his eyes. His wife said, "No doctor has ever talked to him like that before," and she began to cry. We adjourned to the ICU waiting room, and within an hour the family had agreed to a new plan -- DNR reinstated, shift to comfort measures, transfer from the ICU, and pain relief. Richard came out of ICU and remained comfortable until his death several days later.

I told the story some time later, and a colleague asked how I'd known what to say to get the patient and family to a new, and more realistic, understanding. Dumb luck, I replied. I said that Richard had seemed uniquely ready at that moment to voice his underlying spiritual concern -- that he was being punished by God for some unknown transgression. I said that if I'd arrived ten minutes later or ten minutes earlier, I probably would have met the same resistance that other clinicians had previously encountered. I said I'd just gotten lucky, that's all.

It can be tempting to conclude that you have some special power, some extraordinary sensitivity that you bring to bear at moments of human suffering. And for those of us called to do this work, maybe we can become more attuned over time to nuances suggesting pain that's more than physical. If chance favors the prepared mind, perhaps it favors the prepared soul as well. On the other hand, it may be as simple as being in the right place at the right time, as elementary as asking a question. Dumb luck is still luck, after all.

Buy In, Opt Out

2011-03-14T19:07:00.003-05:00

Why are some doctors so reluctant to stop aggressive treatments? An article last year in Critical Care Medicine helped explain why surgeons, at any rate, so often press on over the objections of patients and families. In talking with their surgical colleagues, Dr. Margaret Schwarze and her research team unearthed the idea of an implied contract between surgeons and patients. From the surgery perspective, it went like this: I'll take you to the operating room and will accept the risk that things might go wrong. You as the patient agree to stick it out, to work with me even if the post-operative ride is rough. Dr. Schwarze called it "surgical buy-in," and it was particularly threatened if patients chose too early (in their surgeons' opinion) to switch to comfort measures exclusively. Surgeons experienced feelings of "betrayal, unhappiness, disappointment, and even culpability" when patients or families, faced with post-op problems, said "enough." Saying "enough" and withdrawing life-sustaining treatments "were contradictory to the goals and values of surgery and surgical culture," according to the study.

Schwarze's key point, I think, is that the buy-in is implied and not necessarily said out loud. So when surgeons' goals of care clash with patients' goals of care, the potential for conflict is real.

I recently saw this dynamic play out in the case of Charles, an 80 year old man, a husband and father, who had lymphoma (a form of cancer) and who'd just completed a long hospitalization complicated by aspiration pneumonia. He'd been on a ventilator and was in the hospital for a month. A day after he left for a nursing home, he was back with another episode of aspiration. This time, though, one of his legs was very weak. An emergency evaluation showed that a vertebra in his mid-back had been almost completely destroyed -- possibly by the lymphoma, perhaps by an infection. Either way, his spinal cord was in peril and his ability to walk threatened. The neurosurgeons came in and worked through the night to stabilize Charles's spine. As is typical, Charles went from the OR to ICU on a ventilator. A few hours later, the family requested that the ventilator be removed and that Charles be permitted a natural death. This was not a decision that the neurosurgeons were happy with. It's just too early, they said. He might get off the ventilator in a day or two. They reluctantly allowed me to meet with Charles's family -- his wife, daughter, and son.

We spent over an hour reviewing the events of the last couple of months. From the family's point of view, the patient has been severely ill for several weeks, starting with his recent hospitalization for aspiration pneumonia and respiratory failure. During that hospitalization he had a swallow study. The recommendation was for pureed and thickened liquids only. Post-hospitalization he went to a nursing home but returned rapidly to the hospital with another round of respiratory symptoms and the new problem with his spine. They agreed to surgery because, in the son's words, "they had to give him a chance." The post-op outlook was worse than they expected. Their understanding, based on what the surgeon told them afterwards, was that the spinal cord problem had probably been present for days at least, worsening the chance of independence. Also, they knew that their loved one was critically ill with pneumonia and septic shock.

His son Jacob recounted numerous discussions with his father about his father's fierce need for independence. He was walking a week ago. "He would never want to be paralyzed, unable to control his feces and urine, eating nothing but baby food." Jacob wept as he said that his father would never forgive him if he was, at the end of medical treatment, dependent. His daughter spoke at length about the need to relieve suffering and assure a natural dying. His wife voiced agreement with these views. I suggested that the treating physicians felt that he should receive conventional care for another day or so before reaching a determination about further steps, but the family felt this would only prolong his suffering. I called the neurosurgeon to talk things over. He was unhappy -- among other things, a death only hours from the end of surgery would reflect badly on him -- but resigned to letting the family have its way.

This is what I wrote in my consultation note: "In my judgment, this is not a hasty or ill-considered conclusion. While it is true that the patient is only hours post-op and that the final neurological outcome cannot yet be predicted, it is more likely than not that he would not be able to regain full ambulation. The family appears to be taking into account the overall clinical context -- an elderly man with cancer who has been gravely ill for most of the last few weeks and who repeatedly voiced his unwillingness to be dependent, wheelchair-bound, 'hooked up to machines,' etc. Given that judgment, I can support withdrawal of mechanical ventilation and pressors [medicines to sustain blood pressure] now rather than later." Charles was taken off the ventilator and the pressors, moved to the Palliative Care Unit, and died peacefully just 24 hours after the surgery had ended.

They say that hindsight is always 20/20. I can only try to imagine the frantic discussion in the middle of the night, the surgeons anxious to use all their skill to preserve the patient's ability to walk, the family not in a position to digest the news and certainly not able to offer up an option. Had there been a more detailed attempt to tease out the family's goals for Charles, their concerns might have come out more forcefully and the outcome might have been different. No one can know for sure. What we do know is that this family elected to opt out of a buy-in they hadn't fully realized they'd bought. How many examples of conflict between the health care system and the people it serves can be traced to a miscommunication about both goals and process? Facing advanced illness and the high probability of significant disability, how many patients and families would opt out instead of buying in?

Dying Alone

2011-02-27T17:14:00.005-06:00

I introduced Larry in my last post, "A Day in the Life." He'd come to the hospital saying that he couldn't breathe. He'd lost his appetite and a lot of weight. After a week of tests, the bad news came back: stage 4 lung cancer, already spread outside the lung to the liver and the bones. He agreed to chemotherapy and then stopped after one treatment, saying it hadn't helped. His record has several notes from oncologists along the lines of "I explained that it's wrong to say the treatment is not working after just one dose," but Larry was determined. All he wanted was to be comfortable, he said. That's when my team and I made Larry's acquaintance. He moved to our inpatient unit and passed away a few days later, pain-free and breathing easily.

Larry had no real medical record. On admission he proudly told everyone that he hadn't seen a doctor in 50 years or more. He lived alone. No family members were listed in his chart. There was rumored to be a distant relative in another state, but calls to that number didn't connect to a person or to voicemail. Larry did have a friend of sorts, someone who lived in his building and took care of his cat. But there was no one to call when Larry entered hospice, and no one to notify that he'd died.

Our instinct is that it's sad for anyone to die alone. Deep in our collective consciousness, I think, is the Hollywood death-bed scene -- the dying person surrounded by loved ones, perhaps dispensing final words of wisdom before taking one last breath and slipping away. I've had dozens of conversations that begin something like, "Doctor, how long? His daughter/grandson/best friend wants to be here at the end, and that person needs to know when to come." I've had family members literally refuse to step out of a patient's room for fear of missing the moment of death. Not long ago, a rabbi told me that he was organizing a prayer group to be present at a patient's dying moment, so he needed as much precision as I could supply. I used to work for a hospice that took pride in its "vigil program," a group of volunteers who'd sit by the bedside so that no one had to be alone during the final hours and minutes.

I've had many private conversations over the years with dying people in which they've shared their fears. Often they're afraid of suffering. They fear for their families' well-being, and sometimes they worry that they've left some piece of interpersonal work undone. But they never tell me they fear dying alone. On the contrary, some have said they were afraid of dying in front of their families. They wanted to spare them the pain of witnessing that final breath.

All hospice veterans have seen this: a family sits in vigil with a loved one who seems endlessly suspended between life and death. The family leaves en masse, perhaps to get a bite to eat. And moments after the loved ones exit, the dying person completes the work and the soul detaches from the body. When families express amazement, we tend to offer an interpretation. "She was waiting for you all to leave," we say, "probably because she wanted to protect you from seeing the very end." And this explanation, in my experience, is comforting to families.

So we say that no one should die alone, yet we seem to accept with equanimity when someone we love -- and I hesitate to use this word -- chooses to die alone. It's an odd paradox. Perhaps the dying don't fear dying alone. Perhaps on some level they embrace it. And so perhaps what we ought to say is not that no one should die alone, but that no one should have to because of circumstance or fate.

Lows and Highs

2011-02-17T22:57:00.008-06:00

A day in the life...

Things didn't start out so well today. A patient's family was reportedly furious because I'd raised the possibility that their loved one might be ready to step down from inpatient to home hospice care. They claimed they'd been promised that he could stay forever on our hospice unit. I don't know how they'd reached that conclusion; it didn't come from me, and it's my job to make those calls. Those of us in the hospice world understand that anger aimed at us often isn't about us. Instead, it reflects the raw emotions set loose by grief and loss. I chose to have intermediaries deal with the family. Maybe by tomorrow emotions will cool down enough to talk the problem through.

In the next room an older woman seems moments away from death. Her cancer is far advanced; it involves her internal organs, her bones, and even her skin. She has the faraway look of the dying. Her husband of sixty years strokes her forehead and talks about their time together. When he calls her by her nickname, I feel a tightness in my chest. His wife and mine have the same name -- and, as it happens, the same nickname.

Across the hall is Larry, a loner in his early seventies who hadn't seen a doctor in more than fifty years. "That's why he's lived so long," I quipped to the resident who called me about him the other day. Larry came to the emergency room because he couldn't breathe. His cancer involved both lungs, his liver, and his bones. He says he's fine, but we know he has just a few days to live. I tell him not to worry, that we'll take good care of him, and he coughs his way through a thank-you.

Then there's Natasha, 93 years old, a Ukrainian Jew and Holocaust survivor who came to America three decades ago, learned the language, and built a new life. Only now that life is coming to an end. I spent an hour with her son and his family, helping them decide what made sense for her now. In a post about a year ago, I quoted the author Francine Russo, who wrote, "The real challenge in making decisions about life-extending treatment is how much we can focus on what our dying parent needs rather than our own anguish. This is the ultimate test of emotional separation." Natasha's family was still wrestling with their anguish when I left to see my next patient.

Halfway down the hall is Shirley, 103 years young. She had dwindled a bit in recent years but still put on make-up every day and held court at home, surrounded by her large and doting family. She'd been admitted to the hospital because she was becoming withdrawn. They found a large mass in her abdomen, probably cancerous. Her family chose not to to proceed further and instead enrolled her in hospice. As she declines day by day, her daughter weeps at the bedside, telling me, "It's too soon, it's too soon." Experience has taught me that, in one way or another, it's always too soon.

Today also contained a bit of stealth. We've had Ginny on our unit for a couple of weeks, a young woman with terrible cancer and horrible pain who came to us after having seizures at home. We've had to negotiate over and over again with her hyper-attentive husband Richard, who keeps telling us she's not in so much pain (this despite her moaning and grimacing) because -- and he freely admits this -- it's important to him that she remain as awake as possible. (One of these days I'm going to post an entry entitled "Terminally Ill Patients as Family Pets," I swear to God.) Today he was away from the bedside for a few hours, and Ginny's sister stood vigil in his place. I shared with her my concern about Ginny's pain, and the sister told me right off that she agreed with me. We upped the dose and the moaning and grimacing became much less. Returning from his time away, Richard seemed none the wiser.

Then there was a trip to the ICU, where Barbara, an older woman, was dying despite the application of most of the known critical care modalities. She had a living will that made her preferences clear. She'd wanted none of this. The ICU usually calls me when they've exhausted all their options, not before they start down the road that everyone knows leads to the edge of a cliff. I wish they read those living wills and talked about them with patients and their families before they started. Still, this time I parachuted right into the landing zone. Barbara moved out of ICU to our palliative unit. She looked more comfortable immediately, and her daughter seems reconciled to losing her mother in a day or two.

There were other patients, and a hundred or so e-mails to read and deal with. (I'm supposed to grow and develop our program, too, and on days like today the administrative side can drive me to distraction.) At the end of an all too typically long day, I looked in on Bob, a grade-school teacher who'd come in because the pain from his stomach cancer was out of control. I swung open the door to his room and saw him playing the guitar, singing with a couple of friends. Bob, I've learned, is a deeply religious man. The chorus to the song went, "Lord, I have reverence for you." I smiled, bowed my head, and waited for him to finish. His pain is so much better.

It's good to end a hospice day with reverence, I think.

A Tale of Two Couples

2011-01-23T14:57:00.004-06:00

My colleagues tell me all the time that they couldn't do what I do, and my friends ask me all the time if my work is depressing. Helping patients and families navigate the terrain of life-limiting illness is not for those who are comfortable being detached emotionally. The work is hard, but among its rewards is the privilege of having a front-row seat on so many aspects of the human condition. We see pain, but also joy. We see old wounds ripped open, but also love.

In the last few weeks I've been involved with two couples whose love for each other played out in different ways.

Hal was a hospice patient in his late sixties who'd come in from home because the pain from his stomach cancer was getting out of control. What we first thought would be a quick hospitalization turned into a stay of over a month. I'd met Hal before he'd gotten really sick. Predictably, he was the nicest guy you'd ever meet -- I say "predictably" because sometimes, it seems to me, the really nasty people never get sick. We got Hal's pain stabilized, but then he became delirious, and it took most of our tricks to keep him settled and to prevent him from hurting himself. There was no way he could go home or to another setting like a nursing home. His wife Jackie never left his side. And I mean that literally. Her universe, for more than a month, was Hal's hospital room. Friends and family brought clean clothes and food. She worked on her laptop when Hal was asleep and held his hand when he was awake. The staff learned to stay out of Hal's room when Jackie climbed into the bed to "spoon" with her husband.

From time to time I suggested that Jackie take a walk or go shopping or do something for a change of scene. She always smiled and always turned me down. She told me how important it was to her to be there for her husband and especially to be there when he died. And bit by bit, he became less and less awake, his pain and delirium controlled, and she was there for him right up to the end. Their love required her constant presence, and it never occurred to her to handle it any other way.

At about the same time, we admitted another hospice patient from home. Victor had led a rugged life. He was an alcoholic with cirrhosis and hepatitis. His liver and kidneys were failing rapidly. His partner Steve was twenty years his junior, and he was so beside himself with the though of losing Victor that he could barely come to visit. But we did talk about their relationship and about their love. They'd been together for fifteen years, and Steve was so young that this was clearly his first serious relationship. They had no real friends and no support system except each other. "It was always us against the world," Steve said.

Victor declined rapidly over a few days, his jaundice deepening and his kidneys finally quitting altogether. On the last day Steve came by in the morning. I watched as he held Victor's hand, kissed his forehead, and called him "sweetie" and "honey." Victor died later that day, but Steve was not there. It's our observation that sometimes patients seem to wait to be alone before they pass. Perhaps on some level Victor understood how hard his dying would be on Steve, and perhaps he chose to wait.

Being a hospice doctor gives me no claim to expertise on any aspect of the human condition, let alone love. But each day teaches me once again that love is gay and love is straight, that love is long and love is short, that love is hard and love is easy. Love may not make the world go 'round, but it is present in its infinite varieties among the dying and those who care for them.

We Need More

2010-12-19T19:08:00.002-06:00

I've stayed away from writing about health care policy -- there are plenty of people out there far better as policy wonks than I could ever be -- but a recent editorial in the Journal of Palliative Medicine calls out for comment. The writer was Dr. Sean Morrison, a leader in the effort to bring hospice and palliative care into the mainstream of American medicine. Dr. Morrison notes that many American medical schools now teach palliative care principles. But the so-called hidden curriculum often works at cross-purposes and devalues the practice of palliative medicine.

You know what the hidden curriculum means. If you've ever heard something like, "Now that you've finished your training, we'll teach you what it's really like to do this job," well, that's the voice of the hidden curriculum. Physicians in training are highly influenced by the words and deeds of their senior instructors and mentors. If those doctors give no more than lip service to the core mission of palliative care -- relieving suffering, helping articulate goals, guiding patients and families through transitions -- then the younger generation will do the same. Monkey see, monkey do.

The palliative care workforce is still too small for the workload. Here are some remarkable numbers that Dr. Morrison cites:

There is one cardiologist for every 71 persons experiencing a heart attack
And there is one oncologist for every 141 patients diagnosed with cancer
But there is only one palliative medicine physician for every 31,000 persons living with a serious, life-threatening illness

Palliative care works. Whether delivered through hospice or not, palliative care programs "reduce symptoms, improve doctor-patient-family communication and satisfaction with care, [and] enhance the efficiency and effectiveness of hospital services," Dr. Morrison writes. To this hospice and palliative medicine specialist, that sounds like an important part of the effort to improve the American health care system's affordability, accessibility, and quality.

To counteract the hidden curriculum, we're going to need a lot more help.

"Does He Have a Cure?"

2010-12-13T10:03:00.003-06:00

Dana was too young to be as sick as she was. Diagnosed in her early 40s with a rare form of uterine cancer, her tumor had filled her pelvis and literally was erupting through the skin below her belly button. When I first met her, she was weak, bleeding, and frightened. All of us involved with her care -- the oncologist, the ICU staff, and my palliative care team -- believed that she would only live a couple of weeks at most.

But we hadn't counted on Tom, Dana's hard-charging husband. Tom seemed to believe that he could bend the universe to his will if only he pushed hard enough. In family meetings he did the talking while Dana stayed quiet. Tom advocated continued aggressive care -- more chemo, transfusions to help with anemia and bleeding, radiation treatments -- when it seemed to us that Dana just wanted to stop. It was Tom who recited the list of milestones that Dana had achieved -- getting to attend her daughter's wedding, celebrating a birthday, moving into a new home. She had lived for several months longer than we'd believed possible. None of us were sure that Dana thought achieving the milestones had been worth it. But it was hard to find time to talk with her alone. Tom was a constant presence at the bedside.

Dana lived for much of her last six months in hospitals, spending three months in an inpatient bed at one point without a break. Many days were spent negotiating with Tom, who wanted to blame Dana's weakness on anything -- the drugs, inadequate nursing, the food -- anything but the terrible cancer that was taking his wife's life.

"Am I dying?" is a question a hospice doctor hears a lot. There's no border crossing, no checkpoint, no security screening that demarcates the beginning of the Land of the Dying. One often can only know the answer to the question in retrospect. Certainly from Tom's perspective, his wife was not dying until the very end.

But the end came eventually when Dana was admitted to our palliative care floor for the last time. Tom was still talking about radiation and more chemo, but this time Dana stopped him. She'd had enough, she said, and there would be no more. We focused on comfort -- although Tom still requested, and got, more lab tests and a transfusion just a day before Dana died. And we had endless discussions with Tom about exactly how much pain medicine we could give, because he believed the drugs, and not the cancer, bore responsibility for his wife's decline.

Late one Friday afternoon, I quietly entered Dana's room. She was unresponsive and ashen. I knew from her breathing that her life expectancy could be measured in minutes. Tom was sitting by the bed, stroking Dana's face and holding her hand, his back toward me. Another family member acknowledged my presence with a nod. The atmosphere was so charged, the room so still, that I was afraid to breathe loudly, let alone speak. After perhaps five or ten minutes, the family member said, "The doctor's here, Tom. Do you want to ask him anything?"

A long minute passed, and Tom asked, "Does he have a cure?"

My heart burst open. I had to work to prevent my knees from buckling. And then I looked at Dana. She was gone. I put my stethoscope on her lifeless chest, and Tom -- the man who'd shown no pain, who'd demonstrated nothing but a fierce determination to surmount his wife's cancer -- Tom began to weep.

And I found my inner self rejoicing just a little bit. Not over the death of a brave woman, and not over a husband's pain. But the fact that pain could be expressed, that anguish could be seen -- that seemed cause for quiet celebration. Tom was unlikely to ever be able to heal without taking the first, tentative step of acknowledging his loss and his suffering. I hope he can remain open to the feelings he finally let us see.

And as for me, I know I have to let my heart break over and over again, as I encounter the Toms and the Danas of this world and try to guide them through the Land of the Dying.

Facing Death

2010-12-04T21:22:00.002-06:00

If you haven't seen it, you owe it to yourself to watch "Facing Death," a documentary recently shown by the Public Broadcasting Service. Here's the link:

http://www.pbs.org/wgbh/pages/frontline/facing-death/

This documentary highlights some of the trade-offs inherent in high-tech, modern medicine. I thought it was extraordinary that several patients and their families permitted such a personal look at their journeys through serious illness.

As a hospice and palliative medicine physician, I was surprised that symptom relief, comfort care, and hospice weren't dealt with at all. Hospice was mentioned once -- unskillfully, I thought -- by one doctor talking with one family. And I cringed when she said that "doing nothing" was an option. For the record, hospice care isn't doing nothing. It's substituting one goal of care for another. I frequently have hospice patients receiving multiple medications to relieve their pain and other symptoms while our entire team works to assure emotional and spiritual needs are attended to. That's not nothing. That's a whole lot of something -- something that all of us need when we are facing death.

Eight Minutes

2010-10-03T07:59:00.004-05:00

"She's 74 with end-stage lung disease," the ICU resident told me over the phone. "BiPAP-dependent, unresponsive, and the family is thinking about withdrawing care." Meaning, Molly wasn't expected ever again to breathe well enough on her own to survive. She was wearing a tight-fitting mask that helped push air in and out of her disease-ravaged lungs; if that were removed, she probably would die within hours. She couldn't be aroused. She had five adult children who now understood that their mom had come to the end of the line.

I gently chided the resident about the phrase "withdrawing care," which I detest -- as someone wiser than me once wrote, we may withdraw certain forms of treatment, but we never withdraw care -- and told her I'd come meet with the family. A son and a daughter were at Molly's bedside. We moved to a small conference room so that I could review the situation. They understood that she would never want to be permanently connected to a breathing machine. One by one the other three kids arrived. I did the same review three more times, spending over two hours with Molly's family. In the end, they agreed on a comfort approach. The BiPAP would come off while their mother received morphine to ease the work of breathing. If she kept breathing on her own, she'd come out of the ICU and would transfer to our acute palliative care unit. To everyone involved, me included, this seemed the most compassionate choice.

And so it went. The morphine was started around six that evening, the BiPAP was removed and an ordinary oxygen mask substituted, and Molly actually continued to breathe without apparent distress all night while maintaining an adequate amount of oxygen in her blood. I came by early the next morning, verified our intentions, and asked the ICU staff to get the transfer going.

Now, in a busy intensive care unit, the top priority is not usually transferring a patient whose care had been "withdrawn" to what some think is the elephant graveyard of the hospital. About four hours passed between my thumbs-up in the ICU and the time Molly arrived on the palliative care unit. I looked at Molly, looked at the orderly pushing the gurney, and said, "Hurry up." She was gray and, I thought, minutes away from death. The orderly hurried. We got her into bed just before the kids arrived.

Our head nurse joined me in Molly's room as the children circled the bed. In turn, each began to say his or her good-bye. When the second child had finished, my experienced eye told me something had happened. The nurse and I exchanged a glance that said: Our patient has just died.

But the good-byes weren't done. It was the turn of the third one, and then the fourth, and then the fifth. Just as the last child finished speaking, I looked at the clock. Eight minutes since Molly had died. I reached for my stethoscope, moved to the bed, and listened for a heartbeat I knew would not be there. And then I said: "That was so extraordinary. I was watching your mom as each of you spoke. Just as you all finished, I could tell that she was taking her last breath. Obviously she waited to say her own good-bye until all of you had said yours." Molly's five children nodded, and cried, and held each other for a long time. The nurse and I expressed our sorrow for their loss and accepted their thanks for making their mother's passing a gentle one.

Then I left the room and falsified the medical record and the death certificate, listing the time of death as eight minutes later than it actually happened.

My profession values truth, and not being truthful on a death certificate is probably a crime. What would you have done?

Overreach

2010-09-06T08:40:00.010-05:00

She was 48 years old, she had struggled with her cancer for a long time, and when she was readmitted to the hospital on a Sunday afternoon -- her third admission in as many months -- it was clear she was dying. The on-call oncologist and I met with her large family to talk about our assessment. We reviewed what she'd been through over the course of her illness and more recently -- long admissions for pain and other symptoms, our campaign (ultimately successful) to bring them under control. "But now," I said, "all the decision-making collapses down to one choice: will it be a hard death or an easy death? Will we do lab tests and CT scans and try to restart her heart if it stops beating? Or will we focus on her comfort exclusively, keeping in mind the sad truth that, no matter what we do, she will soon leave us?"

The family's spokesman said they need time -- a few days, he said -- to ponder the implications of what we'd said. I replied that they might not have a few days, that their loved one was so close to death that the choice might be thrust upon them within hours. "Not to decide is to decide," I said. Unless they agreed to a "do not resuscitate" order, if their loved one's heart stopped the code team would come running, tubes at the ready and defibrillators fired up. "Is that what she would really want?" I asked. The family would not budge. So we moved into disease-modification mode. We did tests and normalized abnormal values. And I kept talking with the family, since the patient herself really couldn't communicate at that point. As they raised different questions -- did the improvement in kidney function tests mean that her kidneys were permanently better? what about nutrition? -- I kept returning to what I thought was the central question: what kind of death would she have?

Thinking back, I'm sure I was trying to protect her from her family. I could see what was going to happen, but they could not. So I pushed harder than I should have. I didn't want her to have the kind of high-tech death that the family's non-decision was leading to. And they pushed back, ultimately moving their loved one to an acute medical floor and making it clear that I was "too negative" and was unwelcome at the bedside.

So her last three weeks of life included another CT scan (predictably showing further cancer growth), two surgeries to drain urine into bags on the outside (since the cancer blocked the tubes connecting the kidneys and the bladder), multiple transfusions, and many blood tests. I watched from a distance, feeling the pit in my stomach growing each day. Finally, she had a seizure. The code team was called at six in the morning to intubate her for "impending respiratory failure." The anesthesiologist literally had the tube in his hand when the patient's daughter, just barely an adult but still the designated power of attorney, screamed that they had to leave her mother alone, that she would not have wanted this, that they had to make her DNR.

So they did, and eighteen hours later she was dead.

I grieved for her then, and I grieve for her still. I lament that I could not save her from the hard death she experienced. And I feel guilty that it was partly my fault. What if I'd taken another approach with the family? What could I have said, or not said, that might have made a difference? I'm so often told that I've said exactly the right thing to help patients and families make tough choices. Why did I overreach here?

The honest answer is that I loved her.

No, no, not that kind of love. Not even a Jimmy Carter-esque "lusting in the heart" kind of love. I loved her for her courage, for her unfailing sense of humor, for her grace under pressure, for her passion about what mattered to her. (If you were to Google her name, you'd find that she was a human rights activist on two continents.) I loved her for her willingness to endure just to spend more time with her extended family. I loved her because -- as is true for most patients I've come to love and admire over the years -- she showed me what kind of person I ought to be.

We try to protect the ones we love. Sometimes we can't. In this case I didn't, as the psychiatrists might say, manage my transference very well. But tomorrow morning I'll still work to protect my patients from suffering and unnecessary pain at the end of their lives -- hopefully without overreaching.

Memorial

2010-08-15T19:29:00.002-05:00

As a hospice doctor, I go to a lot of funerals. My patients' families are always amazed and grateful when I attend, but that's not why I go. Part of it is about closure and paying respects, of course, but I derive another purpose from the trip to the church or synagogue or funeral home. Often it's only at the funeral that I get some sense of what my patients were like before I met them. When they are eulogized, or when I see a wall of photos under a heading like "A Celebration of the Life of..." I'm often amazed myself. I get a sense of my patients before they were my patients, when they were strong and vibrant spouses, parents, and members of the community.

That's what I expected would happen when I went to a memorial service recently. Rob had been a young man, only in his mid-forties when cancer took him. He'd had ties to the world of show business, so it didn't surprise me that his memorial included elements of stagecraft, expert video editing, and music. And I wasn't surprised that a lot of people were there -- maybe two or three hundred, filling a small auditorium in the artsy part of town.

What did surprise me was how much I cried.

I've shed a tear at other funerals, and even at the bedside (although there I am always careful, lest my needs take center stage over those of my patients and their loved ones). But this time was different. I didn't censor, I just let things happen and tried to make sense of my feelings as I watched the outpouring on the auditorium stage of love, genuine love, for Rob and what he had done for those he'd been close to.

And then I understood. I wasn't crying for him. I was crying for me.

I cried because I couldn't imagine a memorial service for me looking anything like the one for Rob. I cried because I couldn't imagine that twenty people, let alone two hundred, would give up an evening to say nice things about me. I cried because I couldn't imagine that my life, already a lot longer than Rob's, would ever have that kind of meaning and impact. I understood then that my patient's short life was telling me to live the rest of my own life better -- to be warmer, and more open-hearted, and more loving.

As a hospice doctor, I go to a lot of funerals. I also get the chance to examine my own life daily as I navigate through the suffering that my patients and their loved ones endure.

The Opposite of Love

2010-05-25T18:37:00.001-05:00

Under the heading of "I wish I'd written that," I refer you to a wonderful posting on another blog that I follow:

http://www.geripal.org/2010/05/opposite-of-love.html

Time to Grieve

2010-05-18T21:28:00.006-05:00

They'd discussed it over and over again, the two of them. How he never wanted to end up on a machine. How he didn't want to be resuscitated, despite his long history of serious heart disease. How he wanted to go quietly if it was his time to go. They'd agreed, the two of them, that allowing a natural death was the right thing to do. He was a doctor, and she was his longtime companion and office nurse. More than most, they could see into the future.

But when she heard a thud and raced into the bathroom at home, she found him pulseless on the floor. Never mind the conversations, and to hell with the agreements -- nothing could stop her from calling 911 and starting CPR. Four days later, the ICU team confirmed her worst fears. His brain was irreversibly damaged from lack of oxygen -- "anoxic encephalopathy," we call it -- and it was time to call palliative care. My mournful task was to show her that the man she loved could be disconnected from the ventilator humanely -- no gasping for air, no struggle, no pain. A few hours after the ventilator was removed, he was transferred to our palliative care unit for end-of-life care.

The next day, I found her alone at the bedside, weeping. "We had an agreement," she said, "and I broke it. He wanted to die naturally and not be resuscitated. But I couldn't help it. I just couldn't see him lying there and not do anything."

There's no course in medical school that tells you what to do in a moment like that. But just as she felt she had to do something, so did I. "Look at it this way," I said. "If you'd followed the agreement to the letter, he would have been with you one minute and gone the next. Because you did CPR and called 911, you and everyone else who loves him have a little time to get used to the idea. A little time to start the grieving. He's not suffering now. What you did turned out to be a gift after all." She looked at me and wiped her tears, then nodded and thanked me. I went on to the rest of my rounds. He died a few hours later, surrounded by friends and family.

The traditional medical part of my job -- figuring out the source of a patient's pain, calculating drug doses -- is easy. The hard part is responding to whatever unpredictable and emotionally laden content comes my way. Five years from now, the family of a dying person won't remember or care if I used morphine or fentanyl to reduce their loved one's pain. But they'll remember every word I said and every gesture I used when their anguish and their grief overflowed, crying out for a response from those called to work at the end of life.

Revoke -- An Update

2010-04-24T11:22:00.007-05:00

Last month I wrote about Adele and how her family's anguish played out in their decisions to enroll in hospice and then revoke the benefit a day later. I speculated that Adele would die an uncomfortable death in a nursing home, unless the home panicked (as they are prone to do) and returned her to the hospital.

I've had some follow-up about Adele. She left the hospital and moved to a nursing home. About ten days later, at the family's insistence, she was brought to the emergency department. They felt she wasn't doing well. The ED did its job, finding no changes of any substance, and she went back to the nursing home. A week later I discovered that she was once again a hospice patient -- enrolled with another program, not with mine -- and on their inpatient hospice unit. She died there several days after admission.

So I advocated for hospice, the family accepted and then rejected my advice, and finally accepted it again but went with a different hospice program? What's the take-home message here? Should I be gloating that they finally saw things my way? Angry that they rejected my program in favor of another? Depressed because I wasn't a good enough palliative medicine specialist to get them to stick with their first decision?

I vote for "none of the above." Instead, I think Adele and her family teach us two important lessons.

The first is that bearers of bad news do so at that their peril. "Don't shoot the messenger" applies equally well to warfare and the breaking of bad news -- not that there aren't other parallels, by the way. I think one reason Adele's family chose another hospice the second time around was because it was so hard for them to get there.

The second is that, faced with the devasting realization that nobody actually does live forever, each patient-family unit carves its own trajectory and proceeds at its own pace. The process can't be hurried. Sometimes I think that our job is to shield families, to protect their emotional space while they wrestle with the tough decisions they'd rather not have to make. Creating a safe, non-judgmental context for patients and families is part of the work I do every day.

Revoke

2010-03-22T19:40:00.009-05:00

We all know in our heads that no one lives forever, but it's a different matter altogether when our loved one is dying in front of our eyes. For adult children facing hard choices about their desperately ill parents, the dynamic is often filled with grief and pain.

Recently I was asked to see Adele, a woman in her eighties who'd sustained a large stroke involving the left side of her brain. It was clear to all that her massive brain damage meant she'd never function independently again. And then there was the cancer. An abnormal admission chest x-ray prompted a CT scan that showed a nasty-looking nodule in her right lung. Other tests convinced Adele's primary medical team that the cancer had spread from another source. The consulting oncologist recommended comfort measures instead of aggressive diagnostic efforts. I was asked to consult. Adele was unresponsive and not arousable, holding her eyes at half-mast, and breathing through her mouth.

Adele's husband was distraught to the point of paralysis. "My daughter will be here soon, " he kept saying. When she arrived, it was obvious there was no love lost between parent and child; it seemed that every third or fourth sentence she said was a variation on the theme of, "Dad, be quiet." With some difficulty we talked about hospice as a means to help Adele die comfortably and with dignity. Adele's daughter accepted my advice to start down the comfort path. She and her father signed the papers, her mother was moved to the hospice part of the hospital, and staff worked to align her treatment orders with the exclusive goal of reducing pain and suffering.

The next day, all hell broke loose. Both father and daughter announced loudly that Adele wasn't getting good care and that they had moved to hospice way too soon. They wanted out, and they wanted out now.

It's actually a simple matter to quit hospice. You sign a couple of forms, and -- abracadabra! -- you are right back in the conventional health care system. Adele moved back to a regular medical floor. For the next ten days, various doctors once again noted her dismal prognosis and the near-zero possibility of improvement. The stomach specialist, who gets paid to put in feeding tubes, wrote an eloquent note about why it would be immoral to put one in Adele. All to no avail. The family insisted that Adele would soon recover and be like her old self. At the family's request, the social worker found a nursing home that would take her, and off she went.

Now, I haven't visited Adele's nursing home. But I'd wager that its care doesn't compare to that provided every day on our hospice unit by nurses who want to be there and who specialize in end-of-life care. So the decision to revoke couldn't have been based on care delivered, at least not when assessed objectively. But why would this family make a decision so obviously not grounded in objective reality? Why give up a good thing like hospice? Why, as nurses and physicians wondered aloud, did they want to torture her?

The author Francine Russo recently wrote, “The real challenge in making decisions about life-extending treatment is how much we can focus on what our dying parent needs rather than our own anguish. This is the ultimate test of emotional separation.” I believe Adele's family had trouble with emotional separation. I think their anguish at the thought of losing her blinded them to a loving and compassionate assessment of what she needed when she needed them to put her needs first.

Adele will die at the nursing home, unless she develops an abnormal vital sign that panics the facility into sending her to the emergency room. In that case, she'll die in the hospital while facing the full brunt of modern, disease-oriented medicine. Either way, it will be an entirely preventable tragedy. We need to put our loved ones first.

Medicate, Medicate

2010-03-13T19:23:00.005-06:00

Families of hospice patients often complain that their loved one is "over-medicated." Dad isn't arousable and isn't talking, so it must be the morphine. If only we would turn down the drip, Dad would wake up and interact, or so the reasoning goes. A variation of this theme is the request that we reduce the pain medicine while family is visiting so that they can chat with Dad, then turn it back up later once everyone's left so that he can sleep. One of our many jobs is to gently explain that it's the disease, not the drugs, that is responsible for the patient's decline. We can't manipulate our patients' level of consciousness the way families often think we can.

A central tenet of hospice is that we don't hasten our patients' death, nor do we stand in the way of death. So we're sensitive to the charge that we're giving too much medicine when what we are trying to do is assure our patients' comfort. We give drugs the way Goldilocks might -- not too much, not too little, but just right.

Not long ago, I ran into the opposite problem. Anne was in the last phases of her colon cancer, admitted to our inpatient unit and, by the assessment of every staff member, comfortable and pain-free. "Not so," said her two adult daughters, "we want her sedated even more. Our mom is a stoic. She wouldn't report pain to you. But we know she's in pain, and we want her to have more morphine." Anne was intermittently conscious, and she had blinked when the daughters asked her if she was in pain. That was their evidence. But her face and body were relaxed, and her breathing was easy -- all signs that tell hospice workers their patients are pain-free. The staff felt they were being railroaded into giving more medication than they felt was justified. A nursing supervisor recorded a conversation at four o'clock in the morning with one daughter. "Are you telling me you want euthanasia for your mother?" she asked. "Yes" was the reply.

I spent a couple of hours with the daughters over the last two or three days of their mother's life, talking in great detail about how we assessed patients and why we thought she was comfortable. I explained how we balance giving enough medication to relieve suffering while trying to avoid any hastening or acceleration of the dying process. The daughters didn't buy it. Right up to the end, when Anne was deeply unconscious and skipping breaths for 30 seconds or more, they clamored for more drugs. Our staff was convinced that Anne died peacefully, but there was no peace for those she left behind.

What motivates families to make a request like this? There are cynical explanations -- a son needs to get back to work, or there's a lot of money to be inherited. It's hard to believe that getting a will into probate faster would motivate a child to ask for euthanasia for a parent, but I suppose it's happened now and then. Or there may be an ambivalent relationship between players in the end-of-life drama. Perhaps there are unresolved issues stemming from childhood. Now that the child can, in effect, exercise parental power over his parent, it may be tempting to turn the tables once and for all. That, too, has probably happened from time to time.

But I believe the reason lies most often with the intense pain that people feel when their loved ones are dying before their eyes. Pain...and impotence, the inability to change the outcome, to protect a loved one from the finality of death. If I have no power to prevent my wife from dying, then I'll exercise my power to prevent her from feeling any pain at all. Both hospice workers and families share the goal of relieving suffering. But because we work in the fishbowl that is America's ambivalence about dying -- think of the "Obama death panel" insanity -- hospice people also must be sensitive to charges that "all you do is give them morphine and kill them." That need to balance is irrelevant to families grieving the loss of a loved one in advance of the loss itself. And therein, I think, lies the seed of the conflict we had with Anne's daughters. I know of no easy solution to the "medicate, medicate" dilemma other than to educate, educate.

Emergency

2010-01-05T22:29:00.002-06:00

She was 92, desperately ill, and screaming at the top of her lungs. I was rounding in the hospital when I got the call from the residents in ICU -- could I come right away? Of course I could. It's hard enough dealing with critical problems when you've got some physician miles under your belt. But it's truly terrifying for a young doctor, just months out of medical school, to face a problem that doesn't easily reduce itself to lab tests and x-rays. I've long felt a responsibility to not leave physicians in training alone to stumble in the darkness.

She lived in a nursing home, which shipped her to the emergency department because she was "altered." In other words, she was acting crazy. The ED did its job. The staff quickly determined that she probably had a serious infection, that her kidneys had stopped working, that her lungs and heart were perilously close to failure, that her blood would no longer clot. She was bleeding from her rectum and possibly into her head. Her odds were slim to none. Family members quickly gathered before she was sent upstairs to ICU, yelling and thrashing on the gurney. The nurses responded by tying her wrists to the bedrails.

Blessedly, the family's first question was, "Do you have a palliative medicine doctor available?"

The residents and I quickly confirmed the ED's findings. Even before I briefed the family, I talked the residents through some basic moves -- small amounts of a powerful pain medicine called fentanyl, safe when the kidneys shut down, to treat the obvious pain; an antipsychotic drug, haloperidol, to calm her and hopefully allow us to remove the restraints; and a drug to reduce the gurgling noise she made with every breath, chosen carefully since some medications of that type can worsen delirious behavior. We decided to keep the family in a separate room until their loved one was less uncomfortable. Why should their last visual memories be of a person so obviously not at peace? But it took too much time for things to happen. No one was moving at an acceptable speed. Dying patients who are not getting life-sustaining treatments sometimes fall lower on the ICU priority list. I finally spoke to the nurse in charge: "This is an authentic palliative care emergency, just as surely as a cardiac arrest is an emergency. We need these meds to be given, and we need that to happen now." My voice was under control and I stayed calm, but there was no doubt about what I expected would happen next. Drugs appeared and were given quickly. After a few minutes we could already see that our patient was calmer, still awake but not nearly so agitated.

Ten family members and I talked in a conference room smaller than most walk-in closets. I reviewed the test results and the prognosis. Unlike so many families I deal with, this family closed ranks quickly around a unanimous opinion -- treat for comfort, and allow a natural death. I returned to the unit, worked through some dosage adjustments with the residents, and asked the nurses to untie the dying woman. About 45 minutes after she arrived in the ICU, our patient was ready to receive visitors. The family crowded around the bed, saying their good-byes. A little later, our 92-year-old mother, wife, and grandmother closed her eyes, and three hours after she came through the doors of the ICU she was gone.

If we have nothing else to offer, it seems to me we can at least offer the possibility of a smooth transition from this life to whatever may or may not follow. In medicine, an emergency means a situation that just can't wait. A delirious elder at the end of her life, obviously suffering with a life expectancy of minutes to hours -- if that isn't an emergency, what is?

Angel

2009-08-13T22:30:00.003-05:00

It disturbs the natural order of things when parents bury their children. Any death is a tragedy in its own way -- "it's never enough time," I find myself saying to families over and over again -- but especially when the dying one is as innocent as Helen, a 20 year old whose soul detached and headed skyward today. Helen lived with a rare and untreatable cancer for almost two years, never uttering an unkind word or, as far as anyone knows, expressing a trace of anger about having been singled out unfairly.

I'm always astonished to see photos of my patients taken before they became ill. The contrast between the pictures and the reality of the dying person is striking. It shouldn't have mattered, of course, but our team couldn't help noticing that the pre-cancer Helen was breathtakingly beautiful.

They say that every dysfunctional family is dysfunctional in its own way. The adults in Helen's life were anything but. Her mom in particular had a history of substance abuse, and in the last three weeks of Helen's life Mom was arrested twice because of loud threats and hints of violence. Our hospice staff worked tirelessly to relieve Helen's physical symptoms -- terrible pain, vomiting, double vision caused by the spread of the cancer to her brain -- and also to hold the family together. I made weekly visits, partly to keep an eye on Helen but mostly to give a booster shot of hope and confidence to Mom and her ex-husband (Helen's biological father) and her current husband. My message to Mom was simple and constant -- you have to hold it together for Helen's sake.

A couple of weeks ago, another relative who helped care for Helen told me that Helen was an angel who'd been sent to earth to fix her mom. Unable to do that, Helen had to leave. That faith, the relative told me, kept her going as she labored along with our hospice team to keep it together for Helen's sake. We all search for meaning as we confront the unspeakable. It occurred to me that I had no better explanation for this tragedy. Today at the bedside we looked down at Helen's body, now free of tubes, washed, and wearing a pretty young girl's dress. The same relative said to me: "A few days after I told you about my angel theory, I was alone with Helen and I told her what I believed. She opened her eyes, looked at me, said 'You're right,' and closed her eyes again."

What do I make of a moment like that? The rational, scientific, doctoring world I inhabit has no room for angels in its explanatory framework. Yet it seems an injustice to label Helen's comment as an expression of delirium and nothing more. As I accompany the dying and their loves ones on a journey filled with tears, it helps me to believe that, every once in a while, I'll encounter an angel.

Hugs and Kisses

2009-05-09T17:14:00.006-05:00

I met Molly when she told her internist she was tired of antibiotics and her orthopedic surgeon to take a hike. Well into her eighties, Molly had the litany of diseases common to many older folks --a bit of heart failure, a touch of kidney trouble, problems with diabetes that had shown up just fifteen years earlier -- but two things stood out. She didn't have a diagnosis of depression. And she had chronic pain -- lots of it. She'd been tried on a variety of pain medicines and, two years previously, had settled down with a fentanyl patch. This seemed to help, and she tolerated it without difficulty, but still she fell down and shattered her hip in multiple places.

Thus began the all too familiar downward spiral in the hospital. Surgery to fix her hip was postponed because she had diarrhea that had to be evaluated. In the meanwhile, she was placed in traction -- effective in reducing the pain from her fracture, but since it limited her ability to roll from side to side it made her back pain worse, which was why she had the fentanyl patch in the first place. Then her stool test came back positive for "c diff" -- Clostridium difficile, a nasty bug that's become a big problem arguably because we doctors haven't been smart about antibiotic choices. Now the surgery was postponed indefinitely while the infectious diarrhea was treated with IV antibiotics. But the infection didn't clear. Molly still had diarrhea as well as terrible pain from her broken hip. Her daughter Sara came to visit from out of town. They both told Molly's orthopedist that she didn't want surgery but did want to die. They told the internist they wanted to stop the antibiotics because Molly wanted to die. He felt torn between his desire to respect his patient's autonomy and what he felt was his professional obligation to treat her illnesses.

Molly's daughter Sara and I talked about the medical difficulties her mom faced. Sara was hoping that hospice might offer a way out.

This was the context when I went to Molly's bedside, pulled up a chair, put down the siderail and took her hand in mine. Those of us in hospice work are often trained in the "breaking bad news protocol," which outlines a series of steps to take. By sitting down and reducing our social distance, I'd taken the first step. The second step is to ask the patient something like, "What's your understanding of your health situation right now?" By having the patient talk about what she believes to be true, the theory goes, you can tailor the way you deliver the bad news you must deliver.

I asked Molly about her illness. I thought she would talk about her hip, or maybe her chronic pain. But instead she turned to me and whispered: "many bad things...so much wasted time...much suffering." It was time to cast the protocol aside. I asked her, "What do you want?" Pushing her chin to the ceiling, she replied, "To go home." "Do you mean heaven?" I asked. She nodded.

There comes a time when you are faced with an impossible situation, and you have to decide whether you will help. Hospice is not about hastening death, and I do not work in one of two states in which physician-assisted suicide is legal. But those are abstract technicalities to a person in pain. So, with Molly's ice-blue eyes fixed on my face, I told her that the power to go home was a power she already had. She could simply stop eating and drinking. After a little while she was unlikely to experience either hunger or thirst. I assured her that we would be there for her.

Her gaze softened, she whispered, "Thank you," and she pulled my entwined hand to her mouth and kissed it. In that moment I knew I had made the right decision. I excused myself to talk with Sara. She confirmed that this was her mother's wish and that she supported the decision. She asked, "Can I hug you now?" and I said yes.

Antibiotics stopped, traction went away, and pain medicine was adjusted. In just a few days, her face relaxed and her breathing easy, Molly went home.

Was this a hastened death? Well, it could be argued that neither Molly nor Sara would have necessarily figured it out on their own. But sometimes you are faced with an impossible situation, and you have to decide whether you will help.

The Mouths of Gift Horses

2009-04-29T22:44:00.011-05:00

Like many physicians, over the years I've received gifts from patients now and then. These sometimes have been occasioned by forces other than gratitude. When I was first in practice, I innocently inquired of a Mormon mother whether her faith permitted me to immunize her children. She gave me a copy of The Book of Mormon because she wanted me to comprehend clearly that, as she put it in her inscription, "Mormons immunize their children unless they don't." Point taken. Another early patient gave me a wheel of cheese. To this day I don't understand why -- but it was delicious.

There's frequently a deep subtext in the doctor-patient relationship, often expressed as a fault line where the tectonic plates of lay and medical culture collide.* This week three different families gave me a gift. Each illuminates a different part of how physicians, patients, and families struggle together over complex decisions at the end of life.

The first was a gift card for a local restaurant. The accompanying note by a grieving son thanked me for my patience in dealing with his mother and his siblings. The five children wrangled over every decision -- should we bring Mom home? should we find a nursing home? who'll take what shift caring for her? -- and it seemed that every day required a new negotiation and a new building of consensus. Sometimes I explained the same point to three different siblings in the same day, each explanation taking many minutes. It was a month before she was ready to leave the hospital and, as it turned out, go home for a short while before her relatively sudden death. As I thought about the gift, it occurred to me that the real message was: "We're sorry."

The second gift came from the wild-eyed, suspicious daughter described in my earlier post, "Code Status." This one was a necktie with a famous designer's label. The daughter told me, "I'm a deeply spiritual person, and I sense you are, too. I've had this tie for many years, just waiting for the right person to give it to. Now I have faith that you are that person." Being put on a pedestal always gives me vertigo. I thought perhaps this gift might mean "We have ultimate faith in you" or, worse yet, "You can do no wrong." I wondered out loud if I was permitted to accept such an expensive gift. (I am salaried by my hospital system.) The daughter replied, "Don't worry about it. I bought it in China, and it's a counterfeit." We'd just concluded working out an elaborate care plan for her mother that would include hospice enrollment a couple of days later. Naturally, the plan completely unraveled over the weekend when I was off call. So perhaps the message of this gift was: "Gotcha."

The last gift came from the daughter of an elderly woman I'll call Molly and who will be described in a forthcoming post called "Hugs and Kisses." As Molly finally lay dying peacefully and free of pain, consistent with her expressed desires but achieved only after a long struggle with her inner demons and with the system, her daughter asked me to choose an item from a collection of photographs she'd done. They were all beautiful nature scenes taken in the western United States. My selection was a sunset, the light shimmering on the ocean and framed by the dark silhouette of an evergreen tree. It seemed appropriate for the moment. We said our good-byes, and once again I learned that sometimes a gift means simply: "Thank you."

-------------------------

*The clash between medical and lay cultures is expertly described in Hippocrates' Shadow: Secrets from the House of Medicine, by David H. Newman, M.D. This remarkable book should be required reading for every health professional, and for every person who's ever consulted a health professional.

Code Status

2009-04-23T21:43:00.005-05:00

When I'm called in as a palliative medicine consultant, often the care team asks me to "clarify the patient's code status" or "get the DNR." Our default posture in medicine is that everyone gets CPR, defibrillation, cardiac drugs -- to steal a phrase from Zorba the Greek, "the full catastrophe" -- unless they specifically declare otherwise. CPR is an example of how medical ideas and technologies often sprint ahead of the evidence for their effectiveness. From a technique developed in operating rooms 50 years ago to restart hearts in otherwise healthy people, resuscitation has become enshrined in contexts for which it was never intended. Yet despite tweaking of the particulars over the years -- so many compressions to so many breaths, to pummel or not to pummel the breastbone with a closed fist -- survival after CPR is dismal, especially in the patients with life-limiting illnesses whom I see every working day.

Code status also is tied up in the admirable move away from paternalism in health care toward respect for patient autonomy. We doctors don't decide for you. You get to choose -- and that's a good thing. But the law of unintended consequences still applies and produces, well, unintended consequences. Now patients and their families are presented with menus -- do you want chest compressions? how about intubation? pressor medications to support the blood pressure? -- when they can't really understand the context of their choices.

Along with our profession's reluctance to dispense bad news (which I've commented on in previous posts), these two trends -- the kudzu-like proliferation of untested technology and the abdication of professional responsibility behind the smokescreen of autonomy -- combine in a perfect storm for patients and families facing life-limiting illness. Recently I consulted on a woman with widespread cancer who'd already chosen to enroll in hospice as soon as she was discharged from the hospital. But she had an episode of very low blood pressure, and the hospital's "rapid response team" rolled in with therapeutic guns blazing. As requested, I talked to the family about their mother's code status. They had a surprisingly nuanced view. They didn't want all the nasty, invasive stuff, but they did want us to make a reasonable effort to give them more time with their mom. When I reported this position outside the room, the nursing supervisor asked, "What about pressors?" The menu mentality was firmly ensconced. I pointed out that the family hadn't sliced and diced their reality that way, and that I felt they were relying on us to define what was reasonable. In reply I got some eye-rolling and a brief soliloquy on why that wasn't an acceptable response. Ultimately I picked up the challenge and said that "reasonable" meant "things that didn't require moving the patient to the ICU." That seemed to satisfy all parties. The patient's blood pressure stayed up, she went home on hospice the next day, and about twelve hours after discharge she died at home.

Another example, this time with an elderly patient whose every organ system was failing. The daughter -- wild-eyed, suspicious, and veering between anger and despair -- had already been offered the menu of choices instead of an honest appraisal of her mother's situation and her chances. She'd chosen a ventilator but none of the other stuff. No one had told her honestly that her mom's chance of getting off a ventilator once placed on it were somewhere between slim and none. How would things actually play out, I found myself wondering during my two-hour meeting with the daughter, if her mother actually did have a cardiac arrest? What would happen to the menu of choices? Would the rapid response team limit itself to intubation and a ventilator, or would the temptation to use other methods creep in? How did we get to this place, anyway?

As a hospice and palliative medicine physician, I can't do much about the unrelenting spread of medical technology in the absence of good evidence that it's effective. But I can try to do something about the menu problem. I'm tempted to try this approach: "If your heart stops and you die, do you want us to try to bring you back to life?" Blunt, perhaps, but closer to the truth than "Do you want pressors?"

Reframing

2009-04-16T21:56:00.003-05:00

The battle was on. Weeks out from major surgery from which she'd never fully recovered, the elderly mother was in bed, moaning in pain and telling anyone who'd care to listen that all she wanted was to die. Her daughters fought with her openly, telling her she was a fighter and that she'd always bounced back before. They instructed the nurses not to give their mother pain medicine because it made her too "doped up" to battle for a cure. The nurses gnashed their teeth as, powerlessly, they watched their patient suffer. The mother said she didn't want another surgery to place a feeding tube, but the daughters insisted. Eventually the mother signed the consent, but her doctor said he wasn't sure she truly understood what she'd signed. The daughters fired the doctor and recruited a new one. That physician persuaded the daughters to let him start pain medication, but the mother continued to moan and lapsed in and out of consciousness, sometimes making sense and sometimes speaking gibberish. Eventually someone said, "Let's call palliative care."

Parachuting into a battleground like this is something every palliative care physician experiences -- sometimes more than once a day. When I arrived on a Friday afternoon -- and it's always a Friday afternoon, or so it seems -- I saw an elderly woman restless in bed with a furrowed brow and rapid breathing. It was obvious that she was in pain. There was no feeding tube, but she was getting a souped-up IV that provided calories, amino acids, and vitamins. I could engage her in conversation only sporadically. When she seemed most lucid, she said she was done with treatment and wanted only to be left alone. When I asked if she wanted to die, she closed her eyes and nodded.

One of her daughters -- I'll call her Lila -- was in the room with me, and when my examination was over I took Lila to the family lounge. We reviewed everything that had happened since the surgery. She did seem to accept that her mother was gravely ill, but she was unsure about the dying part. She felt that a terminal prognosis would mean her mother would stop receiving care and basically just be left alone to die. And she had an issue with the staff accepting her mother's word for it. "Look," she said, "if a person has a bad stomach ache, he might say 'I want to die, I want to die,' but it's because of the pain. He doesn't really want to die."

As I listened to Lila's comment, I felt she had a legitimate point. How many of us have said the word die in just the way she described? But I also sensed an opening, a way to reframe the discussion. "You may be right," I replied. "Perhaps when your mother says, 'I want to die,' she's really saying, 'I want you to relieve my pain and suffering above all, and beyond that I'll let things unfold on their own.'" I said that we could actually do that -- treat her pain without making her unconscious, and support both daughters and their mother no matter what happened. I didn't talk about dying. I talked about living without suffering for however long she would live.

We came to an agreement, and with that my biomedical/drug-prescribing/doctor side kicked in. I changed the pain medicine to a more effective one at a lower dose. I diagnosed delirium -- by definition, fluctuating level of consciousness -- and prescribed a medicine to help clear the mother's disordered cognition. I left the IV alone, figuring that one had to choose one's fights. I altered some other parts of the care plan to minimize pain.

Lila and her sister, taking shifts, remained at their mother's bedside for another two and a half days until she died. By Saturday morning, the mother was unarousable and the daughters said they understood it was time to say good-bye. Throughout the vigil they told the staff they believed their mother was no longer suffering.

"All we are saying," the Beatles sang almost 40 years ago, "is give peace a chance." The prerequisite for peace -- between nations, between people, and even between the warring parts of oneself -- often is a subtle reframing, a tiny change in perception that illuminates a different way of thinking about the conflict. And it's true for peace in dying, too.

Abandonment

2009-04-12T22:10:00.003-05:00

Here's another interesting -- well, disturbingly interesting -- study from the Archives of Internal Medicine. Researchers were talking with patients about hope and their views of the future, but the patients kept bringing up their fear of being abandoned by their doctors. They worried about the loss of their physician's medical knowledge and about the loss of the physician-patient relationship. Family members said the same thing. One offered this quote: "...they're [that is, the hospice team] just here to make you comfortable until you die. But you can't seek your regular treatment from your doctor. Your doctor is out of it."

Physicians, too, worried about feelings of abandonment that their patients might experience. They seemed to understand that continuing treatment, for patients and families, signaled a willingness to keep the relationship going; presumably, a decision not to press on with therapy was a sign, to patients, that their doctor was giving up on them. As a hospice and palliative medicine doctor, I've often wondered why my fellow physicians so often continue treatment even though they know -- and I know they know, because I've asked them -- it has a slim to none chance of helping. Maybe it's not about the treatment. Maybe it's about the relationship.

I'm so troubled by these findings. My hospice team works hard to keep the patient's doctor involved. But many physicians tell the nurses not to bother them, and they expect the hospice team to take over the case once the patient is referred. Others are furious if they're not kept up to date on everything. From the physician side, at least, it seems that the abandonment issue works itself out in many different ways.

Keeping silent when we ought to be explicit...this is a real problem with patients getting honest, direct information, and it has an effect on the question of abandonment, too. Just when they need most to know that they're not alone, patients and families perceive that they are losing care and caring. Can't we just talk?

The Power of Truth

2009-04-05T16:55:00.004-05:00

Over and over in this work I'm reminded of how hard it is for patients and families to get the one thing they crave -- the plain, unvarnished truth of their situation as they face serious, life-limiting illness. Bad news seems to chase honesty from the hospital room. Just when people need hard information the most, they can't seem to get anyone to give it to them. And not knowing the truth can prevent them from achieving their final wishes.

A recent example: I saw Ivan at home one September afternoon. He was dying from far-advanced cancer, and it was clear to me that he had only days to weeks to live. He was in and out of consciousness. He'd emigrated from eastern Europe, the family told me, and he hadn't seen his two brothers in over 30 years. His dying wish was to see them one more time. They were planning to come at Christmas, coming to say good-bye.

Ivan's wife and children were stunned when I reviewed with them my assessment that time was way too short to allow for a visit three months in the future. They recovered, though, and began talking with our hospice social worker. When I came back in a week, Ivan had deteriorated further, and even the most skeptical of the children could see what lay ahead. The social worker was amazing. It literally took phone calls to the U.S. Embassy in the patient's native land, but the brothers got expedited visas and arrived about ten days after I first met him. They had a good visit, I was told, and Ivan roused enough from time to time to recognize them. Two days after the brothers returned to Europe, Ivan was gone.

What would have happened if I'd sugar-coated the prognosis? If I'd done the easy thing and just nodded my head when they told me about the plans for the Christmas visit? (Apparently, that's just what their oncologist had done.) Ivan would have been denied the one thing that mattered most as he lay dying.

The truth was hard to hear, but it gave Ivan's family power.

Less Is More

2009-04-04T07:51:00.003-05:00

So far I've stuck with stories about patients, but I wanted to write about a fascinating recent study that is all about the work of caring for those at the end of life.

Publishing last month in the Archives of Internal Medicine, researchers in Boston posed this question: would it make a difference -- financially or in terms of quality of life -- if cancer patients had a frank discussion with their doctors about their preferences for care at the end of life? Well, it makes a big difference. Patients who'd had the talk were less likely to be admitted to or die in an ICU in the final week of life. They were more likely to enroll in hospice early and more likely to receive hospice care in their homes -- which is what hospice is designed to do. They had less physical suffering and higher quality of life in the last week of life than cancer patients who hadn't had the conversation with their physicians.

And they were less expensive, too. Costs of medical care in the last week were around $1000 less for those who had spoken with their doctors about their preferences for comfort care instead of life extension regardless of the cost in suffering.

By the way, the two groups of patients -- those who talked, and those who didn't -- lived for the same amount of time.

So spending more money in the final week of a cancer patient's life doesn't lengthen it but does worsen its quality. Counter-intuitive? Not really, I think.

For everyone concerned about the high cost of health care, the study contains a remarkable projection. Of the cancer patients interviewed for the study, about 30% had talked about their end-of-life preferences with their physicians. Here's the researchers' amazing conclusion:

If the national proportion of individuals reporting EOL discussions was increased to 50%, our results suggest that we would expect a cost difference of $76, 466, 891 between individuals who had EOL discussions vs theose who had not based on the total number of US cancer deaths per year.

In other words, we could save over $76 million a year -- not to mention untold amounts of agony -- by the simple act of getting cancer patients and their doctors to talk with each other about the end of life. Just talk, and the result is better quality of life and reduced cost in the last week of life. Not every innovation in health care is complicated. Sometimes less is more.

Interesting Quote

2009-04-01T22:21:00.002-05:00

I ran across an inspiring quote in a book called Narrative Medicine: Honoring the Stories of Illness by Rita Charon:

Our current health care system assumes that everyone lives forever, turning away from the realization that lives begin and end, on their own trajectories, but within the biological limits for the species. It is we health care professionals, as curators of the body, who should model the bravery to face the shadow of the end, the honesty to desist from false promises, and the humility to remind of of our limited portion on earth.

As I work each day with patients and families facing life-limiting illnesses, I hope I model bravery, honesty, and -- most of all -- humility. This is awe-inspiring, humbling work, and it is an honor and a privilege to accompany people on this phase of their life journey.

A Reminder About Confidentiality

2009-03-30T06:59:00.002-05:00

A "tweet" from Dr. Christian Sinclair (ctsinclair on Twitter) reminds me to remind my readers of something: None of the patient names mentioned in this blog are real. In some cases I've also changed a biographical detail or two to further conceal someone's identity. If you read a post and think you recognize yourself or your loved one, please understand that you are probably the only person in the world who'd be able to do so. And send me a comment so that I can respond to any concerns you might have about privacy.

I thank you and continue to hope that these stories bring wisdom and comfort to those who read them.

Up

2009-03-29T23:11:00.003-05:00

There's an old line -- from Al Franken, I think -- that "denial ain't just a river in Egypt." Our death-denying culture makes it hard for any family to accept that a loved one is dying. Sometimes it's the dying person who has to show the family the way.

Rebecca was well into her nineties with terrible lungs. To survive, she required the use of a BiPAP (pronounced with a long "i") machine. "Bi-level positive airway pressure" is a way to move air in and out of the lungs without the patient having to exert much effort. It's a breathing machine without a tube in the patient's throat. But it's not so pleasant for anyone, much less an old woman who'd been sick for a long time. There's a tight-fighting mask over much of the face that can induce terrible claustrophobia.

Rebecca's children told me that she'd been wanting to die for a long time. "She wants to join our dad," they told me. The three adult kids had been resisting their mother's entreaties, but now they were convinced. I went to the bedside. Rebecca was lucid when I asked her what she wanted. She pointed a wizened figure at the ceiling and mouthed, "Up. With him."

I spent a couple of hours with the children that day and the next, going over their understanding of their mom's illness and answering questions about how we might manage the withdrawal of the BiPAP. They told me over and over again, "Mom's wanted this for a long time, and she finally persuaded us." By the time we were ready, Rebecca was barely arousable. We gave some simple medications -- for shortness of breath, for anxiety, for congestion -- and took the mask off. She barely stirred. The children and the nurse working with me felt she was completely comfortable. Forty-five minutes later, her shallow breathing stopped. Then there were tears, and hugs, and prayers.

Everyone deserves a gentle passing from this world. To get there sometimes requires everyone in the family to look up and see what's coming. With quiet determination and her index finger, Rebecca got her family to see past their sorrow. I'm pretty sure she went up.

Illegal

2009-03-15T10:00:00.003-05:00

She was old, in the country illegally, and dying of AIDS.

When I met Anne-Marie, she'd already been in the hospital for several weeks. Her relatives back home in Latin America had rejected her because of her illness. Her children in the United States danced around the question of whether they'd take her in. Because she was undocumented, she had no access to Medicaid or any other public programs to fund her care. There have been published reports of hospitals loading sick illegal aliens into airplanes and flying them off to their home countries -- a form of medical deportation, if you will. We weren't going to do that; it's contrary to everything we in the hospice world believe in. So we enrolled her in hospice, ate the cost, and Anne-Marie stayed in her hospital bed.

She was barely arousable and was so thin that a concentration camp survivor would have looked positively obese by comparison. I don't think I've ever had an adult patient whose width from shoulder to shoulder was so small. She never seemed to have a visitor. One morning I discovered her silently grimacing. Pain medication had been ordered as needed, but how does an obtunded patient signal her need? We quickly placed her on a morphine drip at a low dose. Her face relaxed, there was no more grimacing, and she died in apparent comfort a few days later.

One shouldn't have to die alone or in pain. Did her legal status affect the way Anne-Marie was assessed and cared for? I hope the answer is no. Life's end is hard enough already.

The Perils of Arrogance

2009-01-10T10:30:00.002-06:00

Not long ago our team received a referral from a local nursing home. Charles was in his late 70s and suffered from a variety of ailments, most prominently chronic kidney failure. He'd more or less stopped making urine a week before we were called. When we met Charles, he was semi-conscious and moaning. He appeared to have only a day or two to live. Every so often he would suddenly twitch, like a tic involving both arms and both legs.

This twitching is called myoclonus, and while it can be a normal event in actively dying people, it often means that the patient is getting too much morphine while having too little kidney function. One of morphine's breakdown products produces myoclonus, and the only way for that product to leave the body is via the urine. No urine? Worsening myoclonus. And in an odd twist of fate, high levels of morphine breakdown products can actually produce pain. This paradoxical event -- "opioid-induced hyperalgesia" is its mouthful of a name -- is often misinterpreted. Well-meaning staff see the patient thrashing around and looking uncomfortable, they give a morphine dose, the patient doesn't look any better, and they keep on dosing -- oblivious to the pain and suffering they are causing by giving morphine to a patient whose kidneys are shot.

We recognized Charles's problem immediately and asked the nursing home staff to stop giving him morphine around the clock. We proposed some other ways to manage pain. The staff politely -- well, not too politely -- blew us off. They kept giving Charles morphine, his myoclonus worsened, and they continued the drug. An hour before he died, Charles was actually arching his back off the bed while twitching all four extremities wildly.

This is not what hospice people mean by a good death.

In a follow-up debriefing session attended by our entire team, we brought some articles from the medical literature that describe the causes and treatment of myoclonus induced by morphine. The nursing director looked at me and said, "While we understand your point of view, we see ourselves as advocates for the patient."

Hospice folks want to see their patients have their suffering relieved. It's difficult for us when a patient dies in pain despite our best efforts. It's even harder when our best efforts are thwarted by well-meaning people who simply don't know what to do. But it's worse when others stubbornly believe that they and they alone are right, no matter what the facts might say.

The only solution, it seems to me, is for end-of-life experts to continue their quest to educate the public and their health care colleagues about how to relieve the suffering of the dying. Yes, it's true that "ya can't win 'em all," but over time maybe we'll win some more. Charles died of kidney failure, but he died with unnecessary suffering -- caused, in turn, by an overdose of arrogance.

I'm Back

2009-01-09T00:04:00.001-06:00

It's been a long time since I've posted anything on this blog. I suppose that many bloggers quickly tire of the habit. Somewhere I read that 98% or more of blogs and blog postings never attract a single comment, suggesting that the writers are largely writing to themselves. That's not necessarily bad, by the way. Catharsis can be therapeutic.

In the meanwhile, I've decided to return to telling stories of the patients and families with whom I've been privileged to share their final days, weeks, and months. Maybe I need the catharsis.

What Hospice Can Accomplish

2008-06-19T20:19:00.000-05:00

Benjamin came to us over a year and a half after he'd been diagnosed with pancreatic cancer. He was eligible for hospice the day his oncologist gave him the news -- his cancer had already spread to his liver. But Benjamin had elected aggressive treatment and even had participated in some clinical trials. He bought himself an extra year. Finally, though, the tumor had stopped responding, and he accepted his doctor's advice that he enroll with us.

A dapper gentleman of the old school, Benjamin was in his mid-sixties. He was unfailingly polite and was the sort of man who minimized his discomfort. It was only after talking with me for an hour that he admitted he had deep-seated, gnawing abdominal pain that he rated as a 7 on a 0 (no pain at all) to 10 (worst pain imaginable) scale. His appetite was off, and he was losing weight as well as hope.

Dr. Cicely Saunders, who created the modern hospice movement, used to talk about "total pain" -- physical, psychosocial, and existential. Benjamin's physical pain was signficant. But he suffered psychologically, too. He'd taken great pride in his work. He was a teacher of others in his field. His wife suffered along with him. She'd lost her first husband to cancer in his 40s. And Benjamin had left his religion a long time ago, but now with death just over the horizon he longed for some kind of return.

Hospice care is inherently interdisciplinary. Our team did its best to respond on all levels. Benjamin's pain was easily controlled with small doses of methadone and a form of cortisone. Since he and I shared the same religious background, we talked easily about it, and I was able to connect him to local clergy. Our social worker, nurse, and chaplain worked around the edges of his despair about leaving his wife behind, and with her about the dread of seeing her history repeat itself. Our combined efforts brought relief to his suffering. Benjamin worked until eight days before he died. He was able to attend a tribute at which 200 people -- coworkers, friends, and students -- honored him with their memories of how he'd made a difference in their lives. His passing was gentle and quiet, with his wife and our nurse and home health aide in attendance. The team went to his funeral, a gesture much appreciated by his widow and his children from his first marriage.

What would Benjamin's death have been like without hospice? He might well have enrolled in yet another clinical trial and come to his end in a hospital, hooked to machines with his physical pain under-treated and his other suffering scarcely noted. Instead, the totality of his pain was addressed and, hopefully, relieved. I take great pride in knowing that, but for the efforts of our team, Benjamin might not have been able to attend that tribute and certainly would have left this world with unresolved pain.

No matter what one believes about what happens when this life is over, surely a gentle and comfortable passing is to be preferred. Hospice can help make that happen.

Too Fast

2007-11-01T05:40:00.000-05:00

Alice was a feisty, independent woman with a terrible cigarette habit and lungs to match. Two weeks before she was referred to hospice, she was driving her own car and regaling friends and families with her strongly held opinions on anything and everything. Then she took a turn for the worse. Although exacerbations are common in chronic lung disease, this one was different. Alice didn't bounce back the way she had previously. Her adult children supported the decision to enroll her in hospice.

When I met Alice, she was in her bedroom. She hadn't been downstairs in over a week. She was working at breathing but still had the energy to laugh about political developments. (She followed the Democratic presidential race with energy and enthusiasm.) She was quite clear that she was dying and was most concerned about not feeling pain during the process. It was clear to me that she would likely be gone in a matter of days.

One of my harder jobs is offering a prognosis that's shorter than patients and families expect. Sitting around the kitchen table, Alice's family wanted to believe that they had a few months, or even a few weeks, to get ready for the loss of their mother. With as much gentleness as I could muster, I told them I thought she would die in a matter of days or perhaps a week or two. The body language around the table changed as we talked it through. In the end they accepted my recommendation that we start morphine, the hospice drug of choice for breathing trouble, right away. Almost immediately her shortness of breath improved, but she stopped eating and drinking and three days after enrolling she was unconscious. She remained comfortable with no signs of struggle and died the following day, just four days after signing up for hospice care.

Alice's death came too fast for her family. It almost always does. I spent two hours in her home that first day, hearing about her life, talking with her directly, and going over the plan with her children. More than anything else, I think a hospice doctor gives the gift of time. There's no other medical specialty, for the most part, that's willing to sit for long periods with patients and families to do the hard work of listening, counseling, and guiding. Any death comes too fast for everyone involved, but the one thing hospice doctors cannot be is fast. A physician's time is a gift at the end of life.

Debility Unspecified

2007-10-26T18:55:00.000-05:00

Lorraine (not her real name, of course) is a woman in her eighties who has been slowly failing for a number of years. She's been anemic without a clear cause and has been losing interest in eating in particular and her surroundings in general. Her reclusiveness probably is also fed by her longstanding diarrhea, which commenced after bowel surgery three years ago. She's been badly depressed for many years, receiving both medicines and electroshock. Oh, there are other "diagnoses," too -- diabetes, high blood pressure, acid reflux, arthritis -- but no one disease ties everything together and explains her decline. It seemed obvious to her doctor that she was likely to die within a few months, hence the interest in hospice. She is dying, or so it seems, but it's death from a thousand paper cuts. Our word for this in hospice is "debility unspecified," sometimes called "adult failure to thrive," but in English I think it means a frail elder whose soul is slowly detaching from the world. I have been present at the moment of death and have felt the sudden departure of the soul -- something I hope to talk about in future posts -- but I am convinced that sometimes the soul leaves the body inch by inch over a long time. "Debility unspecified" is what we say when the soul leaves a gap big enough for us to notice.

So many of our parents look just like Lorraine, and the anguish of the children is palpable. One of Lorraine's daughters called me today, prompted by a decision to seek nursing home care. But what Patricia (as I will call her) really wanted was an answer to this question: can my mother's decline be reversed? She asked about intensive conventional medical treatment, physical therapy, and (to use her word) "coercing" her mother to eat.

I found myself responding on several levels. It would be easy, of course, to pigeon-hole Patricia as a child who just can't accept reality and let her mother go. There's an old line, which I think originated with Al Franken, that says "denial ain't just a river in Egypt." Over the years I've heard from unhappy family members who've said they felt pushed by hospice workers to, in effect, stop whining and face facts. Inside myself I wasn't asking Patricia to stop whining, but part of me understood her questions as a form of denial. But denial, of course, is a defense mechanism. Underneath the defenses was a child frightened about losing her mom. An adult child, but a child nonetheless. Recognizing that strong emotion, the thing being defended against, helped me keep my composure as Patricia kept going over the same ground and asking the same questions.

But I also felt myself getting angry -- not at the patient or her family, but at the health care system generally. We in medicine have transformed the public's consciousness about death. We pretend to have an answer for everything. We see disease, even death from a thousand paper cuts, as something we can reduce to an abnormal and controllable physiologic process. We have created the expectation that Lorraine's slow decline, the gradual detachment of her soul from her body, can be stopped or at least deterred indefinitely. In its inability to accept the inevitable and shift its focus from cure to comfort, modern medicine resembles the ancient Persian emperor who sent his troops into the sea with whips to persuade it not to make waves. On that level Patricia isn't in denial. She's behaving exactly as we trained her to behave.

By Way of Introduction

2007-10-25T14:04:00.003-05:00

I'm a hospice doctor. Someone once asked me if caring for dying people depressed me. My honest answer was no, but that's not the whole story. Being with dying patients, accompanying them on the last phase of life's journey, is a privilege, a rare window on the very best -- and the very worst -- of the human condition. That's not depressing, it's enlightening.

But there's no getting around the sadness that those who work with the dying are prone to feel. It's an occupational hazard. One thing I've learned is that sorrow is not depression. "Every man's death diminishes me," said the poet John Donne, and that's especially true for someone you've gotten to know only in the days, weeks, and months before you both have to say good-bye. Sorrow is part of being alive, of dealing with loss and pain and grief. Depression sounds so clinical, like something you should take a pill for. Sorrow goes with being human. There's no need to medicalize it.

Why a blog written by a hospice doctor? I intend to share stories about my most important friends and teachers, the patients and families with whom I've worked. By doing so perhaps I can shed a little light on territory that you may have never seen before -- what people experience as their lives wind down, and what can be done to make the journey a little less scary and a lot more comfortable. None of us knows what lies ahead. The stories posted here may work the way a support group functions. By hearing from others with similar problems, one's own struggles sometimes feel less overwhelming and more manageable.

Before I provide some background information about myself, I want to explain why I've chosen to blog anonymously. I've been influenced by the writings of someone calling himself "Hospice_Guy," a hospice administrator who has a blog of his own. Hospice_Guy recently stopped posting personal opinions on his own blog, citing the efforts of other hospices to guess his identity and the misuse of what he'd written by competitors. I choose to avoid that problem by keeping my identity to myself. The patients and their families are the real stories here, anyway, not me.

But you are entitled to know a few details. Unlike most hospice doctors, I work at this full time. My hospice is in a fair-sized American city. I also provide palliative care to hospitalized patients. Palliative care is basically about using the hospice skill set before there's a formal declaration that the prognosis is limited. (I hope to give a fuller picture in a future post.) I'm a guy whose remaining hair is steadily turning gray. I came to hospice and palliative care after a good many years in primary medical care. It was always something I'd wanted to do, and when the timing came together, I took the opportunity.

Being a hospice doctor is unlike being a plastic surgeon for at least three reasons. There's no way you can convince yourself you're a sculptor. Your income is a fraction of what your colleague makes doing facelifts and liposuction. And unlike the plastic surgeon, who turns reality into something artificial, a hospice doctor does the opposite. We start with the artificial -- the denial of death, the grasping at straws, the belief that Grandma could beat this thing if only she would eat -- and turn it into reality. The reality that death is inevitable, and it is hard. The reality that death is a loss, even in the most estranged families. The reality that everyone's death diminishes someone. Hospice doctors try to ease suffering because there is no reason that pain -- be it physical, psychological, or spiritual -- should be unattended to.

May these stories bring you insight and perhaps comfort in knowing that no one need go on this final journey alone.