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.

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.