Short Week

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 supplements 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

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

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

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

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

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

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

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

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

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

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

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.