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.

The Opposite of Love

Under the heading of "I wish I'd written that," I refer you to a wonderful posting on another blog that I follow:

http://www.geripal.org/2010/05/opposite-of-love.html

Time to Grieve

They'd discussed it over and over again, the two of them. How he never wanted to end up on a machine. How he didn't want to be resuscitated, despite his long history of serious heart disease. How he wanted to go quietly if it was his time to go. They'd agreed, the two of them, that allowing a natural death was the right thing to do. He was a doctor, and she was his longtime companion and office nurse. More than most, they could see into the future.

But when she heard a thud and raced into the bathroom at home, she found him pulseless on the floor. Never mind the conversations, and to hell with the agreements -- nothing could stop her from calling 911 and starting CPR. Four days later, the ICU team confirmed her worst fears. His brain was irreversibly damaged from lack of oxygen -- "anoxic encephalopathy," we call it -- and it was time to call palliative care. My mournful task was to show her that the man she loved could be disconnected from the ventilator humanely -- no gasping for air, no struggle, no pain. A few hours after the ventilator was removed, he was transferred to our palliative care unit for end-of-life care.

The next day, I found her alone at the bedside, weeping. "We had an agreement," she said, "and I broke it. He wanted to die naturally and not be resuscitated. But I couldn't help it. I just couldn't see him lying there and not do anything."

There's no course in medical school that tells you what to do in a moment like that. But just as she felt she had to do something, so did I. "Look at it this way," I said. "If you'd followed the agreement to the letter, he would have been with you one minute and gone the next. Because you did CPR and called 911, you and everyone else who loves him have a little time to get used to the idea. A little time to start the grieving. He's not suffering now. What you did turned out to be a gift after all." She looked at me and wiped her tears, then nodded and thanked me. I went on to the rest of my rounds. He died a few hours later, surrounded by friends and family.

The traditional medical part of my job -- figuring out the source of a patient's pain, calculating drug doses -- is easy. The hard part is responding to whatever unpredictable and emotionally laden content comes my way. Five years from now, the family of a dying person won't remember or care if I used morphine or fentanyl to reduce their loved one's pain. But they'll remember every word I said and every gesture I used when their anguish and their grief overflowed, crying out for a response from those called to work at the end of life.

Revoke -- An Update

Last month I wrote about Adele and how her family's anguish played out in their decisions to enroll in hospice and then revoke the benefit a day later. I speculated that Adele would die an uncomfortable death in a nursing home, unless the home panicked (as they are prone to do) and returned her to the hospital.

I've had some follow-up about Adele. She left the hospital and moved to a nursing home. About ten days later, at the family's insistence, she was brought to the emergency department. They felt she wasn't doing well. The ED did its job, finding no changes of any substance, and she went back to the nursing home. A week later I discovered that she was once again a hospice patient  -- enrolled with another program, not with mine -- and on their inpatient hospice unit. She died there several days after admission.

So I advocated for hospice, the family accepted and then rejected my advice, and finally accepted it again but went with a different hospice program? What's the take-home message here? Should I be gloating that they finally saw things my way? Angry that they rejected my program in favor of another? Depressed because I wasn't a good enough palliative medicine specialist to get them to stick with their first decision?

I vote for "none of the above." Instead, I think Adele and her family teach us two important lessons.

The first is that bearers of bad news do so at that their peril. "Don't shoot the messenger" applies equally well to warfare and the breaking of bad news -- not that there aren't other parallels, by the way. I think one reason Adele's family chose another hospice the second time around was because it was so hard for them to get there. 

The second is that, faced with the devasting realization that nobody actually does live forever, each patient-family unit carves its own trajectory and proceeds at its own pace. The process can't be hurried. Sometimes I think that our job is to shield families, to protect their emotional space while they wrestle with the tough decisions they'd rather not have to make. Creating a safe, non-judgmental context for patients and families is part of the work I do every day.

Revoke

We all know in our heads that no one lives forever, but it's a different matter altogether when our loved one is dying in front of our eyes. For adult children facing hard choices about their desperately ill parents, the dynamic is often filled with grief and pain.

Recently I was asked to see Adele, a woman in her eighties who'd sustained a large stroke involving the left side of her brain. It was clear to all that her massive brain damage meant she'd never function independently again. And then there was the cancer. An abnormal admission chest x-ray prompted a CT scan that showed a nasty-looking nodule in her right lung. Other tests convinced Adele's primary medical team that the cancer had spread from another source. The consulting oncologist recommended comfort measures instead of aggressive diagnostic efforts. I was asked to consult. Adele was unresponsive and not arousable, holding her eyes at half-mast, and breathing through her mouth.

Adele's husband was distraught to the point of paralysis. "My daughter will be here soon, " he kept saying. When she arrived, it was obvious there was no love lost between parent and child; it seemed that every third or fourth sentence she said was a variation on the theme of, "Dad, be quiet." With some difficulty we talked about hospice as a means to help Adele die comfortably and with dignity. Adele's daughter accepted my advice to start down the comfort path. She and her father signed the papers, her mother was moved to the hospice part of the hospital, and staff worked to align her treatment orders with the exclusive goal of reducing pain and suffering.

The next day, all hell broke loose. Both father and daughter announced loudly that Adele wasn't getting good care and that they had moved to hospice way too soon. They wanted out, and they wanted out now.

It's actually a simple matter to quit hospice. You sign a couple of forms, and -- abracadabra! -- you are right back in the conventional health care system. Adele moved back to a regular medical floor. For the next ten days, various doctors once again noted her dismal prognosis and the near-zero possibility of improvement. The stomach specialist, who gets paid to put in feeding tubes, wrote an eloquent note about why it would be immoral to put one in Adele. All to no avail. The family insisted that Adele would soon recover and be like her old self. At the family's request, the social worker found a nursing home that would take her, and off she went. 

Now, I haven't visited Adele's nursing home. But I'd wager that its care doesn't compare to that provided every day on our hospice unit by nurses who want to be there and who specialize in end-of-life care. So the decision to revoke couldn't have been based on care delivered, at least not when assessed objectively. But why would this family make a decision so obviously not grounded in objective reality? Why give up a good thing like hospice? Why, as nurses and physicians wondered aloud, did they want to torture her?

The author Francine Russo recently 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.” I believe Adele's family had trouble with emotional separation. I think their anguish at the thought of losing her blinded them to a loving and compassionate assessment of what she needed when she needed them to put her needs first.

Adele will die at the nursing home, unless she develops an abnormal vital sign that panics the facility into sending her to the emergency room. In that case, she'll die in the hospital while facing the full brunt of modern, disease-oriented medicine. Either way, it will be an entirely preventable tragedy. We need to put our loved ones first.

Medicate, Medicate

Families of hospice patients often complain that their loved one is "over-medicated." Dad isn't arousable and isn't talking, so it must be the morphine. If only we would turn down the drip, Dad would wake up and interact, or so the reasoning goes. A variation of this theme is the request that we reduce the pain medicine while family is visiting so that they can chat with Dad, then turn it back up later once everyone's left so that he can sleep. One of our many jobs is to gently explain that it's the disease, not the drugs, that is responsible for the patient's decline. We can't manipulate our patients' level of consciousness the way families often think we can.

 

A central tenet of hospice is that we don't hasten our patients' death, nor do we stand in the way of death. So we're sensitive to the charge that we're giving too much medicine when what we are trying to do is assure our patients' comfort. We give drugs the way Goldilocks might -- not too much, not too little, but just right.

Not long ago, I ran into the opposite problem. Anne was in the last phases of her colon cancer, admitted to our inpatient unit and, by the assessment of every staff member, comfortable and pain-free. "Not so," said her two adult daughters, "we want her sedated even more. Our mom is a stoic. She wouldn't report pain to you. But we know she's in pain, and we want her to have more morphine." Anne was intermittently conscious, and she had blinked when the daughters asked her if she was in pain. That was their evidence. But her face and body were relaxed, and her breathing was easy -- all signs that tell hospice workers their patients are pain-free. The staff felt they were being railroaded into giving more medication than they felt was justified. A nursing supervisor recorded a conversation at four o'clock in the morning with one daughter. "Are you telling me you want euthanasia for your mother?" she asked. "Yes" was the reply.

I spent a couple of hours with the daughters over the last two or three days of their mother's life, talking in great detail about how we assessed patients and why we thought she was comfortable. I explained how we balance giving enough medication to relieve suffering while trying to avoid any hastening or acceleration of the dying process. The daughters didn't buy it. Right up to the end, when Anne was deeply unconscious and skipping breaths for 30 seconds or more, they clamored for more drugs. Our staff was convinced that Anne died peacefully, but there was no peace for those she left behind.

What motivates families to make a request like this? There are cynical explanations -- a son needs to get back to work, or there's a lot of money to be inherited. It's hard to believe that getting a will into probate faster would motivate a child to ask for euthanasia for a parent, but I suppose it's happened now and then. Or there may be an ambivalent relationship between players in the end-of-life drama. Perhaps there are unresolved issues stemming from childhood. Now that the child can, in effect, exercise parental power over his parent, it may be tempting to turn the tables once and for all. That, too, has probably happened from time to time.

But I believe the reason lies most often with the intense pain that people feel when their loved ones are dying before their eyes. Pain...and impotence, the inability to change the outcome, to protect a loved one from the finality of death. If I have no power to prevent my wife from dying, then I'll exercise my power to prevent her from feeling any pain at all. Both hospice workers and families share the goal of relieving suffering. But because we work in the fishbowl that is America's ambivalence about dying -- think of the "Obama death panel" insanity -- hospice people also must be sensitive to charges that "all you do is give them morphine and kill them." That need to balance is irrelevant to families grieving the loss of a loved one in advance of the loss itself. And therein, I think, lies the seed of the conflict we had with Anne's daughters. I know of no easy solution to the "medicate, medicate" dilemma other than to educate, educate.