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.

We Need More

I've stayed away from writing about health care policy -- there are plenty of people out there far better as policy wonks than I could ever be -- but a recent editorial in the Journal of Palliative Medicine calls out for comment. The writer was Dr. Sean Morrison, a leader in the effort to bring hospice and palliative care into the mainstream of American medicine. Dr. Morrison notes that many American medical schools now teach palliative care principles. But the so-called hidden curriculum often works at cross-purposes and devalues the practice of palliative medicine.

You know what the hidden curriculum means. If you've ever heard something like, "Now that you've finished your training, we'll teach you what it's really like to do this job," well, that's the voice of the hidden curriculum. Physicians in training are highly influenced by the words and deeds of their senior instructors and mentors. If those doctors give no more than lip service to the core mission of palliative care -- relieving suffering, helping articulate goals, guiding patients and families through transitions -- then the younger generation will do the same. Monkey see, monkey do.

The palliative care workforce is still too small for the workload. Here are some remarkable numbers that Dr. Morrison cites:

• There is one cardiologist for every 71 persons experiencing a heart attack
• And there is one oncologist for every 141 patients diagnosed with cancer
• But there is only one palliative medicine physician for every 31,000 persons living with a serious, life-threatening illness

Palliative care works. Whether delivered through hospice or not, palliative care programs "reduce symptoms, improve doctor-patient-family communication and satisfaction with care, [and] enhance the efficiency and effectiveness of hospital services," Dr. Morrison writes. To this hospice and palliative medicine specialist, that sounds like an important part of the effort to improve the American health care system's affordability, accessibility, and quality.

To counteract the hidden curriculum, we're going to need a lot more help.

"Does He Have a Cure?"

Dana was too young to be as sick as she was. Diagnosed in her early 40s with a rare form of uterine cancer, her tumor had filled her pelvis and literally was erupting through the skin below her belly button. When I first met her, she was weak, bleeding, and frightened. All of us involved with her care -- the oncologist, the ICU staff, and my palliative care team -- believed that she would only live a couple of weeks at most.

But we hadn't counted on Tom, Dana's hard-charging husband. Tom seemed to believe that he could bend the universe to his will if only he pushed hard enough. In family meetings he did the talking while Dana stayed quiet. Tom advocated continued aggressive care -- more chemo, transfusions to help with anemia and bleeding, radiation treatments -- when it seemed to us that Dana just wanted to stop. It was Tom who recited the list of milestones that Dana had achieved -- getting to attend her daughter's wedding, celebrating a birthday, moving into a new home. She had lived for several months longer than we'd believed possible. None of us were sure that Dana thought achieving the milestones had been worth it. But it was hard to find time to talk with her alone. Tom was a constant presence at the bedside.

Dana lived for much of her last six months in hospitals, spending three months in an inpatient bed at one point without a break. Many days were spent negotiating with Tom, who wanted to blame Dana's weakness on anything -- the drugs, inadequate nursing, the food -- anything but the terrible cancer that was taking his wife's life.

"Am I dying?" is a question a hospice doctor hears a lot. There's no border crossing, no checkpoint, no security screening that demarcates the beginning of the Land of the Dying. One often can only know the answer to the question in retrospect. Certainly from Tom's perspective, his wife was not dying until the very end.

But the end came eventually when Dana was admitted to our palliative care floor for the last time. Tom was still talking about radiation and more chemo, but this time Dana stopped him. She'd had enough, she said, and there would be no more. We focused on comfort -- although Tom still requested, and got, more lab tests and a transfusion just a day before Dana died. And we had endless discussions with Tom about exactly how much pain medicine we could give, because he believed the drugs, and not the cancer, bore responsibility for his wife's decline.

Late one Friday afternoon, I quietly entered Dana's room. She was unresponsive and ashen. I knew from her breathing that her life expectancy could be measured in minutes. Tom was sitting by the bed, stroking Dana's face and holding her hand, his back toward me. Another family member acknowledged my presence with a nod. The atmosphere was so charged, the room so still, that I was afraid to breathe loudly, let alone speak. After perhaps five or ten minutes, the family member said, "The doctor's here, Tom. Do you want to ask him anything?"

A long minute passed, and Tom asked, "Does he have a cure?"

My heart burst open. I had to work to prevent my knees from buckling. And then I looked at Dana. She was gone. I put my stethoscope on her lifeless chest, and Tom -- the man who'd shown no pain, who'd demonstrated nothing but a fierce determination to surmount his wife's cancer -- Tom began to weep.

And I found my inner self rejoicing just a little bit. Not over the death of a brave woman, and not over a husband's pain. But the fact that pain could be expressed, that anguish could be seen -- that seemed cause for quiet celebration. Tom was unlikely to ever be able to heal without taking the first, tentative step of acknowledging his loss and his suffering. I hope he can remain open to the feelings he finally let us see.

And as for me, I know I have to let my heart break over and over again, as I encounter the Toms and the Danas of this world and try to guide them through the Land of the Dying.

Facing Death

If you haven't seen it, you owe it to yourself to watch "Facing Death," a documentary recently shown by the Public Broadcasting Service. Here's the link:

http://www.pbs.org/wgbh/pages/frontline/facing-death/

This documentary highlights some of the trade-offs inherent in high-tech, modern medicine. I thought it was extraordinary that several patients and their families permitted such a personal look at their journeys through serious illness.

As a hospice and palliative medicine physician, I was surprised that symptom relief, comfort care, and hospice weren't dealt with at all. Hospice was mentioned once -- unskillfully, I thought -- by one doctor talking with one family. And I cringed when she said that "doing nothing" was an option. For the record, hospice care isn't doing nothing. It's substituting one goal of care for another. I frequently have hospice patients receiving multiple medications to relieve their pain and other symptoms while our entire team works to assure emotional and spiritual needs are attended to. That's not nothing. That's a whole lot of something -- something that all of us need when we are facing death.

Eight Minutes

"She's 74 with end-stage lung disease," the ICU resident told me over the phone. "BiPAP-dependent, unresponsive, and the family is thinking about withdrawing care." Meaning, Molly wasn't expected ever again to breathe well enough on her own to survive. She was wearing a tight-fitting mask that helped push air in and out of her disease-ravaged lungs; if that were removed, she probably would die within hours. She couldn't be aroused. She had five adult children who now understood that their mom had come to the end of the line.

I gently chided the resident about the phrase "withdrawing care," which I detest -- as someone wiser than me once wrote, we may withdraw certain forms of treatment, but we never withdraw care -- and told her I'd come meet with the family. A son and a daughter were at Molly's bedside. We moved to a small conference room so that I could review the situation. They understood that she would never want to be permanently connected to a breathing machine. One by one the other three kids arrived. I did the same review three more times, spending over two hours with Molly's family. In the end, they agreed on a comfort approach. The BiPAP would come off while their mother received morphine to ease the work of breathing. If she kept breathing on her own, she'd come out of the ICU and would transfer to our acute palliative care unit. To everyone involved, me included, this seemed the most compassionate choice.

And so it went. The morphine was started around six that evening, the BiPAP was removed and an ordinary oxygen mask substituted, and Molly actually continued to breathe without apparent distress all night while maintaining an adequate amount of oxygen in her blood. I came by early the next morning, verified our intentions, and asked the ICU staff to get the transfer going.

Now, in a busy intensive care unit, the top priority is not usually transferring a patient whose care had been "withdrawn" to what some think is the elephant graveyard of the hospital. About four hours passed between my thumbs-up in the ICU and the time Molly arrived on the palliative care unit. I looked at Molly, looked at the orderly pushing the gurney, and said, "Hurry up." She was gray and, I thought, minutes away from death. The orderly hurried. We got her into bed just before the kids arrived.

Our head nurse joined me in Molly's room as the children circled the bed. In turn, each began to say his or her good-bye. When the second child had finished, my experienced eye told me something had happened. The nurse and I exchanged a glance that said: Our patient has just died.

But the good-byes weren't done. It was the turn of the third one, and then the fourth, and then the fifth. Just as the last child finished speaking, I looked at the clock. Eight minutes since Molly had died. I reached for my stethoscope, moved to the bed, and listened for a heartbeat I knew would not be there. And then I said: "That was so extraordinary. I was watching your mom as each of you spoke. Just as you all finished, I could tell that she was taking her last breath. Obviously she waited to say her own good-bye until all of you had said yours." Molly's five children nodded, and cried, and held each other for a long time. The nurse and I expressed our sorrow for their loss and accepted their thanks for making their mother's passing a gentle one.

Then I left the room and falsified the medical record and the death certificate, listing the time of death as eight minutes later than it actually happened.

My profession values truth, and not being truthful on a death certificate is probably a crime. What would you have done?

Overreach

She was 48 years old, she had struggled with her cancer for a long time, and when she was readmitted to the hospital on a Sunday afternoon -- her third admission in as many months -- it was clear she was dying. The on-call oncologist and I met with her large family to talk about our assessment. We reviewed what she'd been through over the course of her illness and more recently -- long admissions for pain and other symptoms, our campaign (ultimately successful) to bring them under control. "But now," I said, "all the decision-making collapses down to one choice: will it be a hard death or an easy death? Will we do lab tests and CT scans and try to restart her heart if it stops beating? Or will we focus on her comfort exclusively, keeping in mind the sad truth that, no matter what we do, she will soon leave us?"

The family's spokesman said they need time -- a few days, he said -- to ponder the implications of what we'd said. I replied that they might not have a few days, that their loved one was so close to death that the choice might be thrust upon them within hours. "Not to decide is to decide," I said. Unless they agreed to a "do not resuscitate" order, if their loved one's heart stopped the code team would come running, tubes at the ready and defibrillators fired up. "Is that what she would really want?" I asked. The family would not budge. So we moved into disease-modification mode. We did tests and normalized abnormal values. And I kept talking with the family, since the patient herself really couldn't communicate at that point. As they raised different questions -- did the improvement in kidney function tests mean that her kidneys were permanently better? what about nutrition? -- I kept returning to what I thought was the central question: what kind of death would she have?

Thinking back, I'm sure I was trying to protect her from her family. I could see what was going to happen, but they could not. So I pushed harder than I should have. I didn't want her to have the kind of high-tech death that the family's non-decision was leading to. And they pushed back, ultimately moving their loved one to an acute medical floor and making it clear that I was "too negative" and was unwelcome at the bedside.

So her last three weeks of life included another CT scan (predictably showing further cancer growth), two surgeries to drain urine into bags on the outside (since the cancer blocked the tubes connecting the kidneys and the bladder), multiple transfusions, and many blood tests. I watched from a distance, feeling the pit in my stomach growing each day. Finally, she had a seizure. The code team was called at six in the morning to intubate her for "impending respiratory failure." The anesthesiologist literally had the tube in his hand when the patient's daughter, just barely an adult but still the designated power of attorney, screamed that they had to leave her mother alone, that she would not have wanted this, that they had to make her DNR.

So they did, and eighteen hours later she was dead.

I grieved for her then, and I grieve for her still. I lament that I could not save her from the hard death she experienced. And I feel guilty that it was partly my fault. What if I'd taken another approach with the family? What could I have said, or not said, that might have made a difference? I'm so often told that I've said exactly the right thing to help patients and families make tough choices. Why did I overreach here?

The honest answer is that I loved her.

No, no, not that kind of love. Not even a Jimmy Carter-esque "lusting in the heart" kind of love. I loved her for her courage, for her unfailing sense of humor, for her grace under pressure, for her passion about what mattered to her. (If you were to Google her name, you'd find that she was a human rights activist on two continents.) I loved her for her willingness to endure just to spend more time with her extended family. I loved her because -- as is true for most patients I've come to love and admire over the years -- she showed me what kind of person I ought to be.

We try to protect the ones we love. Sometimes we can't. In this case I didn't, as the psychiatrists might say, manage my transference very well. But tomorrow morning I'll still work to protect my patients from suffering and unnecessary pain at the end of their lives -- hopefully without overreaching.

Memorial

As a hospice doctor, I go to a lot of funerals. My patients' families are always amazed and grateful when I attend, but that's not why I go. Part of it is about closure and paying respects, of course, but I derive another purpose from the trip to the church or synagogue or funeral home. Often it's only at the funeral that I get some sense of what my patients were like before I met them. When they are eulogized, or when I see a wall of photos under a heading like "A Celebration of the Life of..." I'm often amazed myself. I get a sense of my patients before they were my patients, when they were strong and vibrant spouses, parents, and members of the community.

That's what I expected would happen when I went to a memorial service recently. Rob had been a young man, only in his mid-forties when cancer took him. He'd had ties to the world of show business, so it didn't surprise me that his memorial included elements of stagecraft, expert video editing, and music. And I wasn't surprised that a lot of people were there -- maybe two or three hundred, filling a small auditorium in the artsy part of town.

What did surprise me was how much I cried.

I've shed a tear at other funerals, and even at the bedside (although there I am always careful, lest my needs take center stage over those of my patients and their loved ones). But this time was different. I didn't censor, I just let things happen and tried to make sense of my feelings as I watched the outpouring on the auditorium stage of love, genuine love, for Rob and what he had done for those he'd been close to.

And then I understood. I wasn't crying for him. I was crying for me.

I cried because I couldn't imagine a memorial service for me looking anything like the one for Rob. I cried because I couldn't imagine that twenty people, let alone two hundred, would give up an evening to say nice things about me. I cried because I couldn't imagine that my life, already a lot longer than Rob's, would ever have that kind of meaning and impact. I understood then that my patient's short life was telling me to live the rest of my own life better -- to be warmer, and more open-hearted, and more loving.

As a hospice doctor, I go to a lot of funerals. I also get the chance to examine my own life daily as I navigate through the suffering that my patients and their loved ones endure.