Sunday, February 27, 2011

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.

Thursday, February 17, 2011

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.