Easy, Medium, Hard

One week, one young hospitalist, three dying patients. Sometimes it's easy, sometimes so-so, and sometimes it's hard. I'm getting to the age where words like Medicare, advanced illness, and, yes, hospice don't seem so far in the future. Our team recently worked with a new young hospitalist to help her patients and help her deal with the reality that no one lives forever.

Dr. G, as I'll call her, got in touch about a 48 year old woman with a longstanding degenerative neurological disease. "I've just walked in the room, and I think she is dying," Dr. G told me. "Her mother seems so calm and accepting. The patient's so young, and I just want to be sure that I'm doing the right thing" by honoring the patient's wish for no aggressive measures.

When we met the patient, it was obvious that Dr. G was right. Jane was unarousable with rapid, shallow breathing. Her arms and legs were ice-cold, and the skin around her kneecaps was already turning purple. This mottling is often a sign of impending death. So we spoke with her mother. "Jane and I have talked about this many, many times over the last three years," she told us. Jane had already experienced multiple episodes of what we call multi-system organ failure, which means just what it sounds like. She'd been pulled back from the brink half a dozen times, and she wasn't going to tolerate it again. Her written declaration was clear and consistent with her mother's description. "I'm at peace with this," she said. "I feel strongly that Jane has suffered greatly, that she has had enough, and that she'll be going to a better place." Our team reassured Dr. G that she was, in fact, doing the right thing by holding off on transfer to the ICU, pressor drugs to raise the blood pressure, and so on. Jane was quickly transferred to the inpatient hospice unit, where she died comfortably the next day.

Easy? Well, sort of. It's never easy to lose a child (see my December 2011 post, "The Natural Order of Things"), but there was no argument about what was going on and no disagreement about what was the compassionate thing to do. So, yes, easy in the spectrum of not-so-easy things.

Later in the week, we heard from Dr. G again about another patient. Martha was 46, and when her breast cancer was diagnosed and treated five years earlier, she'd decided that the fight was over and that she had won. She went on with her life, feeling fine and doing all the things that a wife, mother, and community member would do. Six months before we met her, the cancer came roaring back. It spread throughout her abdomen and left her with pain, weight loss, and a belly full of fluid. Her oncologist admitted her to the hospital for symptom management, and that's what prompted Dr. G's call to us.

Martha was obviously uncomfortable. She was being attended to by a small group of devoted but protective friends. It was clear to our team that the friends were acting as Martha's guardians, and that anything we proposed had to be cleared by them. (This is a not uncommon dynamic when young female patients are beginning the dying process, I have found.) So we got to work on Martha's pain and shortness of breath. We were not surprised when she and the guardians raised the question of hospice. Uncharacteristically, her oncologist raised no objection. The original plan was for Martha to go home with hospice care, but after three days in the hospital it was clear that she couldn't manage at home even with the help of hospice, her husband, and the guardians. All parties wrestled with the decision for a day or so, and then Martha and those who cared about her accepted a transfer to the inpatient hospice unit where she died, also comfortably, a few days later.

But the really hard one for the young hospitalist was a patient roughly three times her age. Pedro was 86. When he fell at home, he hurt his neck and -- as is often the case with fragile elders -- some of his marginally functioning body systems also took a hit. His heart failure got worse, which in turn affected his not-so-healthy kidneys, and within a few days his lungs were giving out, too. He needed ever-increasing concentrations of oxygen and appeared to be tiring out. Some patients like this are placed on a ventilator, but with everything else going wrong with Pedro it was clear that he would never be able to come off a breathing machine. Dr. G called the patient's sister, who was his medical power of attorney. I listened as she described the situation with great compassion and skill. Unlike many doctors, she didn't avoid the word "dying." She told it like it was. The sister agreed to come in that afternoon to meet with our team, Dr. G, and other family members to talk about next steps and probable enrollment in hospice. A few hours later, we were midway through that discussion when Pedro's nurse appeared and waved me over. He had stopped breathing and his heart was slowing rapidly. I returned to the conference room and told Pedro's sister that he had died. Dr. G looked a bit stricken, and we talked that through. She was feeling guilty that she hadn't moved more quickly to get the family up to speed and enroll the patient in hospice. I reminded her of what a great job she'd done on the phone and told her that no one could have moved any faster.

No end-of-life situation is truly easy -- not for the medical team, not for the family, surely not for the dying. Still, in the space of one week, our team accompanied dying patients, their loved ones, and one young physician through easy, medium, and hard situations. That is the unique satisfaction of a life in hospice and palliative care.