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.

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.

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.

Up

There's an old line -- from Al Franken, I think -- that "denial ain't just a river in Egypt." Our death-denying culture makes it hard for any family to accept that a loved one is dying. Sometimes it's the dying person who has to show the family the way.

Rebecca was well into her nineties with terrible lungs. To survive, she required the use of a BiPAP (pronounced with a long "i") machine. "Bi-level positive airway pressure" is a way to move air in and out of the lungs without the patient having to exert much effort. It's a breathing machine without a tube in the patient's throat. But it's not so pleasant for anyone, much less an old woman who'd been sick for a long time. There's a tight-fighting mask over much of the face that can induce terrible claustrophobia.

Rebecca's children told me that she'd been wanting to die for a long time. "She wants to join our dad," they told me. The three adult kids had been resisting their mother's entreaties, but now they were convinced. I went to the bedside. Rebecca was lucid when I asked her what she wanted. She pointed a wizened figure at the ceiling and mouthed, "Up. With him."

I spent a couple of hours with the children that day and the next, going over their understanding of their mom's illness and answering questions about how we might manage the withdrawal of the BiPAP. They told me over and over again, "Mom's wanted this for a long time, and she finally persuaded us." By the time we were ready, Rebecca was barely arousable. We gave some simple medications -- for shortness of breath, for anxiety, for congestion -- and took the mask off. She barely stirred. The children and the nurse working with me felt she was completely comfortable. Forty-five minutes later, her shallow breathing stopped. Then there were tears, and hugs, and prayers.

Everyone deserves a gentle passing from this world. To get there sometimes requires everyone in the family to look up and see what's coming. With quiet determination and her index finger, Rebecca got her family to see past their sorrow. I'm pretty sure she went up.

What Hospice Can Accomplish

Benjamin came to us over a year and a half after he'd been diagnosed with pancreatic cancer. He was eligible for hospice the day his oncologist gave him the news -- his cancer had already spread to his liver. But Benjamin had elected aggressive treatment and even had participated in some clinical trials. He bought himself an extra year. Finally, though, the tumor had stopped responding, and he accepted his doctor's advice that he enroll with us.

A dapper gentleman of the old school, Benjamin was in his mid-sixties. He was unfailingly polite and was the sort of man who minimized his discomfort. It was only after talking with me for an hour that he admitted he had deep-seated, gnawing abdominal pain that he rated as a 7 on a 0 (no pain at all) to 10 (worst pain imaginable) scale. His appetite was off, and he was losing weight as well as hope.

Dr. Cicely Saunders, who created the modern hospice movement, used to talk about "total pain" -- physical, psychosocial, and existential. Benjamin's physical pain was signficant. But he suffered psychologically, too. He'd taken great pride in his work. He was a teacher of others in his field. His wife suffered along with him. She'd lost her first husband to cancer in his 40s. And Benjamin had left his religion a long time ago, but now with death just over the horizon he longed for some kind of return.

Hospice care is inherently interdisciplinary. Our team did its best to respond on all levels. Benjamin's pain was easily controlled with small doses of methadone and a form of cortisone. Since he and I shared the same religious background, we talked easily about it, and I was able to connect him to local clergy. Our social worker, nurse, and chaplain worked around the edges of his despair about leaving his wife behind, and with her about the dread of seeing her history repeat itself. Our combined efforts brought relief to his suffering. Benjamin worked until eight days before he died. He was able to attend a tribute at which 200 people -- coworkers, friends, and students -- honored him with their memories of how he'd made a difference in their lives. His passing was gentle and quiet, with his wife and our nurse and home health aide in attendance. The team went to his funeral, a gesture much appreciated by his widow and his children from his first marriage.

What would Benjamin's death have been like without hospice? He might well have enrolled in yet another clinical trial and come to his end in a hospital, hooked to machines with his physical pain under-treated and his other suffering scarcely noted. Instead, the totality of his pain was addressed and, hopefully, relieved. I take great pride in knowing that, but for the efforts of our team, Benjamin might not have been able to attend that tribute and certainly would have left this world with unresolved pain.

No matter what one believes about what happens when this life is over, surely a gentle and comfortable passing is to be preferred. Hospice can help make that happen.

Too Fast

Alice was a feisty, independent woman with a terrible cigarette habit and lungs to match. Two weeks before she was referred to hospice, she was driving her own car and regaling friends and families with her strongly held opinions on anything and everything. Then she took a turn for the worse. Although exacerbations are common in chronic lung disease, this one was different. Alice didn't bounce back the way she had previously. Her adult children supported the decision to enroll her in hospice.

When I met Alice, she was in her bedroom. She hadn't been downstairs in over a week. She was working at breathing but still had the energy to laugh about political developments. (She followed the Democratic presidential race with energy and enthusiasm.) She was quite clear that she was dying and was most concerned about not feeling pain during the process. It was clear to me that she would likely be gone in a matter of days.

One of my harder jobs is offering a prognosis that's shorter than patients and families expect. Sitting around the kitchen table, Alice's family wanted to believe that they had a few months, or even a few weeks, to get ready for the loss of their mother. With as much gentleness as I could muster, I told them I thought she would die in a matter of days or perhaps a week or two. The body language around the table changed as we talked it through. In the end they accepted my recommendation that we start morphine, the hospice drug of choice for breathing trouble, right away. Almost immediately her shortness of breath improved, but she stopped eating and drinking and three days after enrolling she was unconscious. She remained comfortable with no signs of struggle and died the following day, just four days after signing up for hospice care.

Alice's death came too fast for her family. It almost always does. I spent two hours in her home that first day, hearing about her life, talking with her directly, and going over the plan with her children. More than anything else, I think a hospice doctor gives the gift of time. There's no other medical specialty, for the most part, that's willing to sit for long periods with patients and families to do the hard work of listening, counseling, and guiding. Any death comes too fast for everyone involved, but the one thing hospice doctors cannot be is fast. A physician's time is a gift at the end of life.

Debility Unspecified

Lorraine (not her real name, of course) is a woman in her eighties who has been slowly failing for a number of years. She's been anemic without a clear cause and has been losing interest in eating in particular and her surroundings in general. Her reclusiveness probably is also fed by her longstanding diarrhea, which commenced after bowel surgery three years ago. She's been badly depressed for many years, receiving both medicines and electroshock. Oh, there are other "diagnoses," too -- diabetes, high blood pressure, acid reflux, arthritis -- but no one disease ties everything together and explains her decline. It seemed obvious to her doctor that she was likely to die within a few months, hence the interest in hospice. She is dying, or so it seems, but it's death from a thousand paper cuts. Our word for this in hospice is "debility unspecified," sometimes called "adult failure to thrive," but in English I think it means a frail elder whose soul is slowly detaching from the world. I have been present at the moment of death and have felt the sudden departure of the soul -- something I hope to talk about in future posts -- but I am convinced that sometimes the soul leaves the body inch by inch over a long time. "Debility unspecified" is what we say when the soul leaves a gap big enough for us to notice.


So many of our parents look just like Lorraine, and the anguish of the children is palpable. One of Lorraine's daughters called me today, prompted by a decision to seek nursing home care. But what Patricia (as I will call her) really wanted was an answer to this question: can my mother's decline be reversed? She asked about intensive conventional medical treatment, physical therapy, and (to use her word) "coercing" her mother to eat.

I found myself responding on several levels. It would be easy, of course, to pigeon-hole Patricia as a child who just can't accept reality and let her mother go. There's an old line, which I think originated with Al Franken, that says "denial ain't just a river in Egypt." Over the years I've heard from unhappy family members who've said they felt pushed by hospice workers to, in effect, stop whining and face facts. Inside myself I wasn't asking Patricia to stop whining, but part of me understood her questions as a form of denial. But denial, of course, is a defense mechanism. Underneath the defenses was a child frightened about losing her mom. An adult child, but a child nonetheless. Recognizing that strong emotion, the thing being defended against, helped me keep my composure as Patricia kept going over the same ground and asking the same questions.

But I also felt myself getting angry -- not at the patient or her family, but at the health care system generally. We in medicine have transformed the public's consciousness about death. We pretend to have an answer for everything. We see disease, even death from a thousand paper cuts, as something we can reduce to an abnormal and controllable physiologic process. We have created the expectation that Lorraine's slow decline, the gradual detachment of her soul from her body, can be stopped or at least deterred indefinitely. In its inability to accept the inevitable and shift its focus from cure to comfort, modern medicine resembles the ancient Persian emperor who sent his troops into the sea with whips to persuade it not to make waves. On that level Patricia isn't in denial. She's behaving exactly as we trained her to behave.

By Way of Introduction

I'm a hospice doctor. Someone once asked me if caring for dying people depressed me. My honest answer was no, but that's not the whole story. Being with dying patients, accompanying them on the last phase of life's journey, is a privilege, a rare window on the very best -- and the very worst -- of the human condition. That's not depressing, it's enlightening.

But there's no getting around the sadness that those who work with the dying are prone to feel. It's an occupational hazard. One thing I've learned is that sorrow is not depression. "Every man's death diminishes me," said the poet John Donne, and that's especially true for someone you've gotten to know only in the days, weeks, and months before you both have to say good-bye. Sorrow is part of being alive, of dealing with loss and pain and grief. Depression sounds so clinical, like something you should take a pill for. Sorrow goes with being human. There's no need to medicalize it.

Why a blog written by a hospice doctor? I intend to share stories about my most important friends and teachers, the patients and families with whom I've worked. By doing so perhaps I can shed a little light on territory that you may have never seen before -- what people experience as their lives wind down, and what can be done to make the journey a little less scary and a lot more comfortable. None of us knows what lies ahead. The stories posted here may work the way a support group functions. By hearing from others with similar problems, one's own struggles sometimes feel less overwhelming and more manageable.

Before I provide some background information about myself, I want to explain why I've chosen to blog anonymously. I've been influenced by the writings of someone calling himself "Hospice_Guy," a hospice administrator who has a blog of his own. Hospice_Guy recently stopped posting personal opinions on his own blog, citing the efforts of other hospices to guess his identity and the misuse of what he'd written by competitors. I choose to avoid that problem by keeping my identity to myself. The patients and their families are the real stories here, anyway, not me.

But you are entitled to know a few details. Unlike most hospice doctors, I work at this full time. My hospice is in a fair-sized American city. I also provide palliative care to hospitalized patients. Palliative care is basically about using the hospice skill set before there's a formal declaration that the prognosis is limited. (I hope to give a fuller picture in a future post.) I'm a guy whose remaining hair is steadily turning gray. I came to hospice and palliative care after a good many years in primary medical care. It was always something I'd wanted to do, and when the timing came together, I took the opportunity.

Being a hospice doctor is unlike being a plastic surgeon for at least three reasons. There's no way you can convince yourself you're a sculptor. Your income is a fraction of what your colleague makes doing facelifts and liposuction. And unlike the plastic surgeon, who turns reality into something artificial, a hospice doctor does the opposite. We start with the artificial -- the denial of death, the grasping at straws, the belief that Grandma could beat this thing if only she would eat -- and turn it into reality. The reality that death is inevitable, and it is hard. The reality that death is a loss, even in the most estranged families. The reality that everyone's death diminishes someone. Hospice doctors try to ease suffering because there is no reason that pain -- be it physical, psychological, or spiritual -- should be unattended to.

May these stories bring you insight and perhaps comfort in knowing that no one need go on this final journey alone.