A Tale of Two Cancers

Magdalena and Eric were across the hall from each other on the cancer wing. She was 72 and he was 27. What a difference a flipped digit makes.

Magdalena's widespread ovarian cancer had been diagnosed just two months before we met. She'd undergone heroic surgery, but it had not cured her cancer. And she had developed a non-healing abdominal wound that drained constantly Our wound care nurse is pretty experienced with this sort of thing, and she said this was one of the worst she'd ever seen. So Magdalena had spent over a month in the hospital, much of it in ICU, before being transferred to oncology. The surgeons and hospitalists involved in her care told the family they should consider hospice. They would hear nothing of it. "Well, how about palliative care?" they asked. It never works when my specialty is presented like that, as if it were hospice without the H. So naturally they rejected palliative care, too.

It was only when most of the family -- especially her oldest son Miguel, who ran the show -- recognized that she was in terrible pain that they asked if I would come and see her. She couldn't speak above a whisper, her forehead and brow were scrunched up, and she grimaced occasionally as she told me her pain was pretty bad. I looked at what she'd been receiving for pain. She had the right dose but the wrong schedule. I made a minor adjustment, and in an hour her pain was gone. Miguel and the other family members -- children, grandchildren, great-grandchildren -- all thanked me profusely. I took them aside and told them that she was not likely to survive the night.

There's an old saying that God is kind to fools and young doctors. There ought to be one that says God is particularly kind to doctors who are foolish enough to make predictions. The next morning Magdalena was sitting up, speaking in a normal tone, making jokes and thoroughly enjoying her family. "Be grateful for this gift," I told Miguel and some of the grandchildren. Magdalena's family enjoyed a few more days with her before she slipped into unconsciousness and died a peaceful death.

Across the hall, Eric was dealing with the knowledge that his stomach cancer -- very aggressive and very widespread when it had first been discovered three years earlier -- had come roaring back. And so had his pain. The nurses and I struggled for two weeks to get Eric's pain under control. Nothing worked -- not even three separate narcotics, each given in huge doses, along with several other so-called adjunctive medications designed to work in tandem with the pain-killers.

Eric had a young wife, a devoted family, and a deep religious faith that God would cure him. He, too, would hear nothing of hospice. So I offered him what we call palliative sedation. We'd administer medications that were intended to make him unconscious, since that seemed to be the only way to control his terrible pain. Most often, palliative sedation is not discontinued and the patient remains unconscious until death. For Eric I was offering a respite for a day or two; my intention was to stop the drug then and allow him to wake up. It's been reported that some patients awaken from respite sedation with their pain greatly relieved. So we tried it for two days. When the sedative was stopped, Eric had one good day before the cancer pain came roaring back again.

I kept adjusting the doses, tinkering here and there, hoping to get the desired result. Every time I went to see him -- and I was there several times a day -- Eric thanked me and shook my hand. He offered to pray for me, and I told him that many people were praying for him.

Three weeks into the hospitalization, Eric's pain suddenly worsened and then he could not be aroused. His abdomen became distended, his bowel sounds disappeared, and he winced when I pushed on his belly and then let go. He'd clearly had a catastrophic event -- maybe internal bleeding, maybe a hole in his intestine. We had come to the end of the line. Eric's wife wondered aloud about transferring him to a nearby academic center, but she came to understand that the outcome would not change. I strongly recommended restarting the sedative drug, and she and the rest of the family agreed. Eric's last day was spent in the company of many friends and family who prayed and wept at his bedside. I had struggled for three weeks to get him comfortable, and at least for the last twelve hours of his life he was.

Not all suffering is physical, and not all suffering can be relieved. It was easy for me to feel like a success with Magdalena. It was not so easy to avoid feeling like a failure with Eric. Not that Eric, or his wife, or any of his family ever uttered a word of criticism. They seemed to understand that I was doing the best I could. But it was hard for me to look in the mirror each morning and not feel the weight of Eric's unrelieved suffering.

Medicine, like politics, is the art of the possible. In palliative care you never know whether your next patient will be an Eric or a Magdalena. All that you do know is that you have to do what you can.

Way to Go

Bertie was 91, and in an earlier, less politically correct era she would have been called spry. She'd been enjoying her life, which was happily free of major, chronic illness. She was surrounded by children, grand-children, and great-grandchildren, along with a network of friends and neighbors in her rural town. And she'd been married for over 60 years, although lately she'd been visiting her husband at a rehab center where he was recovering from a hip fracture. Bertie had barely been sick a day in her life.

About ten days before she died, Bertie had developed a stomach ache -- nothing serious, and nothing that had gotten in her way. Eight days before she died, though, the pain got much worse -- so much so that her family rushed her to the hospital at two o'clock in the morning. She was pale, weak, and in pain with a dangerously low blood pressure. Yes, the family said, we want everything done.

"Everything" meant a rapid-fire evaluation using the best that modern medicine has to offer. And that evaluation quickly revealed the problem. Bertie had a mass in her liver that was bleeding into her belly. It appeared to be a metastasis from the breast cancer that was visible on her CT scan and which also had spread to lymph glands in both armpits. Happily, the bleeding appeared to stop on its own, and after some fluids and transfusions Bertie appeared stable. Four hours after arriving in the ER, she was sent to intensive care.

At 9:30 that morning I walked into ICU planning to make rounds with the team. The attending asked me to see Bertie instead. Her life-prolonging options were bleak. Surgery was basically out of the question. The ICU team had thought about embolization -- threading a thin catheter into the bleeding area and shooting pellets into the vessels to cut off the blood supply -- but that would leave dead tissue behind to form a focus of infection that also would take her life. When the ICU folks can't think of anything else, they tend to think of me.

Bertie was being attended to by two of her children and several grand-kids. I sat down alongside her bed, introduced myself, and asked, "So what's your understanding of what's going on with you right now?" She looked me in the eye and said, "I'm going to die, and probably soon." "How are you doing with that?" I asked. "Oh, just fine," she replied, "I'm old, I've had a good life, and nobody lives forever."

I looked around and saw her children nodding in agreement, although they were tearful. "Well," I said, "let me explain where we might go from here." It's been my experience that patients and families often feel they have just two choices -- sticking with conventional, cure-oriented medicine (no matter how remote the possibility of cure), or doing nothing. "I'm here to tell you," I said to Bertie and her children, "that there's a third choice -- assuring your comfort for however much time you have left."

Bertie gave me a big smile and told me I was the best doctor she had ever met. Her smile wasn't forced; it was as if her whole body was smiling, and radiant, and at peace. Fourteen hours after arriving in the ER, Bertie was transferred to the inpatient hospice unit. She spent a couple of comfortable days there and then decided that she wanted to go home. The hospice team continued to support her and her family at home, where she died peacefully a week after our meeting in the ICU.

Now, I'm not at all sure if I was the best doctor Bertie had ever met. But I am sure that Bertie had a wonderful life and that she approached its end with the courage and grace that we all hope to achieve. She was clear-eyed and clear-headed every step of the way. Like everyone else she came into this world crying and screaming. But unlike so many, she showed us how to have a comfortable and gentle passing from this life to whatever may lie beyond.

Way to go, Bertie -- way to go.

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.