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.