Friday, December 30, 2011

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.

Sunday, December 18, 2011

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.