The Mouths of Gift Horses

Like many physicians, over the years I've received gifts from patients now and then. These sometimes have been occasioned by forces other than gratitude. When I was first in practice, I innocently inquired of a Mormon mother whether her faith permitted me to immunize her children. She gave me a copy of The Book of Mormon because she wanted me to comprehend clearly that, as she put it in her inscription, "Mormons immunize their children unless they don't." Point taken. Another early patient gave me a wheel of cheese. To this day I don't understand why -- but it was delicious.

There's frequently a deep subtext in the doctor-patient relationship, often expressed as a fault line where the tectonic plates of lay and medical culture collide.* This week three different families gave me a gift. Each illuminates a different part of how physicians, patients, and families struggle together over complex decisions at the end of life.

The first was a gift card for a local restaurant. The accompanying note by a grieving son thanked me for my patience in dealing with his mother and his siblings. The five children wrangled over every decision -- should we bring Mom home? should we find a nursing home? who'll take what shift caring for her? -- and it seemed that every day required a new negotiation and a new building of consensus. Sometimes I explained the same point to three different siblings in the same day, each explanation taking many minutes. It was a month before she was ready to leave the hospital and, as it turned out, go home for a short while before her relatively sudden death. As I thought about the gift, it occurred to me that the real message was: "We're sorry."

The second gift came from the wild-eyed, suspicious daughter described in my earlier post, "Code Status." This one was a necktie with a famous designer's label. The daughter told me, "I'm a deeply spiritual person, and I sense you are, too. I've had this tie for many years, just waiting for the right person to give it to. Now I have faith that you are that person." Being put on a pedestal always gives me vertigo. I thought perhaps this gift might mean "We have ultimate faith in you" or, worse yet, "You can do no wrong." I wondered out loud if I was permitted to accept such an expensive gift. (I am salaried by my hospital system.) The daughter replied, "Don't worry about it. I bought it in China, and it's a counterfeit." We'd just concluded working out an elaborate care plan for her mother that would include hospice enrollment a couple of days later. Naturally, the plan completely unraveled over the weekend when I was off call. So perhaps the message of this gift was: "Gotcha."

The last gift came from the daughter of an elderly woman I'll call Molly and who will be described in a forthcoming post called "Hugs and Kisses." As Molly finally lay dying peacefully and free of pain, consistent with her expressed desires but achieved only after a long struggle with her inner demons and with the system, her daughter asked me to choose an item from a collection of photographs she'd done. They were all beautiful nature scenes taken in the western United States. My selection was a sunset, the light shimmering on the ocean and framed by the dark silhouette of an evergreen tree. It seemed appropriate for the moment. We said our good-byes, and once again I learned that sometimes a gift means simply: "Thank you."

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*The clash between medical and lay cultures is expertly described in Hippocrates' Shadow: Secrets from the House of Medicine, by David H. Newman, M.D. This remarkable book should be required reading for every health professional, and for every person who's ever consulted a health professional.

Code Status

When I'm called in as a palliative medicine consultant, often the care team asks me to "clarify the patient's code status" or "get the DNR." Our default posture in medicine is that everyone gets CPR, defibrillation, cardiac drugs -- to steal a phrase from Zorba the Greek, "the full catastrophe" -- unless they specifically declare otherwise. CPR is an example of how medical ideas and technologies often sprint ahead of the evidence for their effectiveness. From a technique developed in operating rooms 50 years ago to restart hearts in otherwise healthy people, resuscitation has become enshrined in contexts for which it was never intended. Yet despite tweaking of the particulars over the years -- so many compressions to so many breaths, to pummel or not to pummel the breastbone with a closed fist -- survival after CPR is dismal, especially in the patients with life-limiting illnesses whom I see every working day.

Code status also is tied up in the admirable move away from paternalism in health care toward respect for patient autonomy. We doctors don't decide for you. You get to choose -- and that's a good thing. But the law of unintended consequences still applies and produces, well, unintended consequences. Now patients and their families are presented with menus -- do you want chest compressions? how about intubation? pressor medications to support the blood pressure? -- when they can't really understand the context of their choices.

Along with our profession's reluctance to dispense bad news (which I've commented on in previous posts), these two trends -- the kudzu-like proliferation of untested technology and the abdication of professional responsibility behind the smokescreen of autonomy -- combine in a perfect storm for patients and families facing life-limiting illness. Recently I consulted on a woman with widespread cancer who'd already chosen to enroll in hospice as soon as she was discharged from the hospital. But she had an episode of very low blood pressure, and the hospital's "rapid response team" rolled in with therapeutic guns blazing. As requested, I talked to the family about their mother's code status. They had a surprisingly nuanced view. They didn't want all the nasty, invasive stuff, but they did want us to make a reasonable effort to give them more time with their mom. When I reported this position outside the room, the nursing supervisor asked, "What about pressors?" The menu mentality was firmly ensconced. I pointed out that the family hadn't sliced and diced their reality that way, and that I felt they were relying on us to define what was reasonable. In reply I got some eye-rolling and a brief soliloquy on why that wasn't an acceptable response. Ultimately I picked up the challenge and said that "reasonable" meant "things that didn't require moving the patient to the ICU." That seemed to satisfy all parties. The patient's blood pressure stayed up, she went home on hospice the next day, and about twelve hours after discharge she died at home.

Another example, this time with an elderly patient whose every organ system was failing. The daughter -- wild-eyed, suspicious, and veering between anger and despair -- had already been offered the menu of choices instead of an honest appraisal of her mother's situation and her chances. She'd chosen a ventilator but none of the other stuff. No one had told her honestly that her mom's chance of getting off a ventilator once placed on it were somewhere between slim and none. How would things actually play out, I found myself wondering during my two-hour meeting with the daughter, if her mother actually did have a cardiac arrest? What would happen to the menu of choices? Would the rapid response team limit itself to intubation and a ventilator, or would the temptation to use other methods creep in? How did we get to this place, anyway?

As a hospice and palliative medicine physician, I can't do much about the unrelenting spread of medical technology in the absence of good evidence that it's effective. But I can try to do something about the menu problem. I'm tempted to try this approach: "If your heart stops and you die, do you want us to try to bring you back to life?" Blunt, perhaps, but closer to the truth than "Do you want pressors?"

Reframing

The battle was on. Weeks out from major surgery from which she'd never fully recovered, the elderly mother was in bed, moaning in pain and telling anyone who'd care to listen that all she wanted was to die. Her daughters fought with her openly, telling her she was a fighter and that she'd always bounced back before. They instructed the nurses not to give their mother pain medicine because it made her too "doped up" to battle for a cure. The nurses gnashed their teeth as, powerlessly, they watched their patient suffer. The mother said she didn't want another surgery to place a feeding tube, but the daughters insisted. Eventually the mother signed the consent, but her doctor said he wasn't sure she truly understood what she'd signed. The daughters fired the doctor and recruited a new one. That physician persuaded the daughters to let him start pain medication, but the mother continued to moan and lapsed in and out of consciousness, sometimes making sense and sometimes speaking gibberish. Eventually someone said, "Let's call palliative care."

Parachuting into a battleground like this is something every palliative care physician experiences -- sometimes more than once a day. When I arrived on a Friday afternoon -- and it's always a Friday afternoon, or so it seems -- I saw an elderly woman restless in bed with a furrowed brow and rapid breathing. It was obvious that she was in pain. There was no feeding tube, but she was getting a souped-up IV that provided calories, amino acids, and vitamins. I could engage her in conversation only sporadically. When she seemed most lucid, she said she was done with treatment and wanted only to be left alone. When I asked if she wanted to die, she closed her eyes and nodded.

One of her daughters -- I'll call her Lila -- was in the room with me, and when my examination was over I took Lila to the family lounge. We reviewed everything that had happened since the surgery. She did seem to accept that her mother was gravely ill, but she was unsure about the dying part. She felt that a terminal prognosis would mean her mother would stop receiving care and basically just be left alone to die. And she had an issue with the staff accepting her mother's word for it. "Look," she said, "if a person has a bad stomach ache, he might say 'I want to die, I want to die,' but it's because of the pain. He doesn't really want to die."

As I listened to Lila's comment, I felt she had a legitimate point. How many of us have said the word die in just the way she described? But I also sensed an opening, a way to reframe the discussion. "You may be right," I replied. "Perhaps when your mother says, 'I want to die,' she's really saying, 'I want you to relieve my pain and suffering above all, and beyond that I'll let things unfold on their own.'" I said that we could actually do that -- treat her pain without making her unconscious, and support both daughters and their mother no matter what happened. I didn't talk about dying. I talked about living without suffering for however long she would live.

We came to an agreement, and with that my biomedical/drug-prescribing/doctor side kicked in. I changed the pain medicine to a more effective one at a lower dose. I diagnosed delirium -- by definition, fluctuating level of consciousness -- and prescribed a medicine to help clear the mother's disordered cognition. I left the IV alone, figuring that one had to choose one's fights. I altered some other parts of the care plan to minimize pain.

Lila and her sister, taking shifts, remained at their mother's bedside for another two and a half days until she died. By Saturday morning, the mother was unarousable and the daughters said they understood it was time to say good-bye. Throughout the vigil they told the staff they believed their mother was no longer suffering. 

"All we are saying," the Beatles sang almost 40 years ago, "is give peace a chance." The prerequisite for peace -- between nations, between people, and even between the warring parts of oneself -- often is a subtle reframing, a tiny change in perception that illuminates a different way of thinking about the conflict. And it's true for peace in dying, too.

Abandonment

Here's another interesting -- well, disturbingly interesting -- study from the Archives of Internal Medicine. Researchers were talking with patients about hope and their views of the future, but the patients kept bringing up their fear of being abandoned by their doctors. They worried about the loss of their physician's medical knowledge and about the loss of the physician-patient relationship. Family members said the same thing. One offered this quote: "...they're [that is, the hospice team] just here to make you comfortable until you die. But you can't seek your regular treatment from your doctor. Your doctor is out of it."

Physicians, too, worried about feelings of abandonment that their patients might experience. They seemed to understand that continuing treatment, for patients and families, signaled a willingness to keep the relationship going; presumably, a decision not to press on with therapy was a sign, to patients, that their doctor was giving up on them. As a hospice and palliative medicine doctor, I've often wondered why my fellow physicians so often continue treatment even though they know -- and I know they know, because I've asked them -- it has a slim to none chance of helping. Maybe it's not about the treatment. Maybe it's about the relationship.

I'm so troubled by these findings. My hospice team works hard to keep the patient's doctor involved. But many physicians tell the nurses not to bother them, and they expect the hospice team to take over the case once the patient is referred. Others are furious if they're not kept up to date on everything. From the physician side, at least, it seems that the abandonment issue works itself out in many different ways.

Keeping silent when we ought to be explicit...this is a real problem with patients getting honest, direct information, and it has an effect on the question of abandonment, too. Just when they need most to know that they're not alone, patients and families perceive that they are losing care and caring. Can't we just talk?

The Power of Truth

Over and over in this work I'm reminded of how hard it is for patients and families to get the one thing they crave -- the plain, unvarnished truth of their situation as they face serious, life-limiting illness. Bad news seems to chase honesty from the hospital room. Just when people need hard information the most, they can't seem to get anyone to give it to them. And not knowing the truth can prevent them from achieving their final wishes.

A recent example: I saw Ivan at home one September afternoon. He was dying from far-advanced cancer, and it was clear to me that he had only days to weeks to live. He was in and out of consciousness. He'd emigrated from eastern Europe, the family told me, and he hadn't seen his two brothers in over 30 years. His dying wish was to see them one more time. They were planning to come at Christmas, coming to say good-bye. 

Ivan's wife and children were stunned when I reviewed with them my assessment that time was way too short to allow for a visit three months in the future. They recovered, though, and began talking with our hospice social worker. When I came back in a week, Ivan had deteriorated further, and even the most skeptical of the children could see what lay ahead. The social worker was amazing. It literally took phone calls to the U.S. Embassy in the patient's native land, but the brothers got expedited visas and arrived about ten days after I first met him. They had a good visit, I was told, and Ivan roused enough from time to time to recognize them. Two days after the brothers returned to Europe, Ivan was gone.

What would have happened if I'd sugar-coated the prognosis? If I'd done the easy thing and just nodded my head when they told me about the plans for the Christmas visit? (Apparently, that's just what their oncologist had done.) Ivan would have been denied the one thing that mattered most as he lay dying.

The truth was hard to hear, but it gave Ivan's family power.

Less Is More

So far I've stuck with stories about patients, but I wanted to write about a fascinating recent study that is all about the work of caring for those at the end of life.

Publishing last month in the Archives of Internal Medicine, researchers in Boston posed this question: would it make a difference -- financially or in terms of quality of life -- if cancer patients had a frank discussion with their doctors about their preferences for care at the end of life? Well, it makes a big difference. Patients who'd had the talk were less likely to be admitted to or die in an ICU in the final week of life. They were more likely to enroll in hospice early and more likely to receive hospice care in their homes -- which is what hospice is designed to do. They had less physical suffering and higher quality of life in the last week of life than cancer patients who hadn't had the conversation with their physicians.

And they were less expensive, too. Costs of medical care in the last week were around $1000 less for those who had spoken with their doctors about their preferences for comfort care instead of life extension regardless of the cost in suffering.

By the way, the two groups of patients -- those who talked, and those who didn't -- lived for the same amount of time.

So spending more money in the final week of a cancer patient's life doesn't lengthen it but does worsen its quality. Counter-intuitive? Not really, I think.

For everyone concerned about the high cost of health care, the study contains a remarkable projection. Of the cancer patients interviewed for the study, about 30% had talked about their end-of-life preferences with their physicians. Here's the researchers' amazing conclusion:

If the national proportion of individuals reporting EOL discussions was increased to 50%, our results suggest that we would expect a cost difference of $76, 466, 891 between individuals who had EOL discussions vs theose who had not based on the total number of US cancer deaths per year.

In other words, we could save over $76 million a year -- not to mention untold amounts of agony -- by the simple act of getting cancer patients and their doctors to talk with each other about the end of life. Just talk, and the result is better quality of life and reduced cost in the last week of life. Not every innovation in health care is complicated. Sometimes less is more.

Interesting Quote

I ran across an inspiring quote in a book called Narrative Medicine: Honoring the Stories of Illness by Rita Charon:

Our current health care system assumes that everyone lives forever, turning away from the realization that lives begin and end, on their own trajectories, but within the biological limits for the species. It is we health care professionals, as curators of the body, who should model the bravery to face the shadow of the end, the honesty to desist from false promises, and the humility to remind of of our limited portion on earth.

As I work each day with patients and families facing life-limiting illnesses, I hope I model bravery, honesty, and -- most of all -- humility. This is awe-inspiring, humbling work, and it is an honor and a privilege to accompany people on this phase of their life journey.