What Are We Going To Do With Dad?

Reference: Health Affairs

July 2005

By Jerald Winakur

A geriatrician stands by during his father’s downward spiral into old age, disability, and dementia.

PREFACE: America is getting older, and older Americans are living longer. What has not changed is the dysfunction and illness that usually accompany aging. Geriatrician Jerald Winakur looks at the “vast inland sea of elders” that is building and wonders where the doctors will come from to care for them. Writing as the son of an eighty-six-year-old man with dementia, Winakur also details the nitty-gritty of caring for an increasingly debilitated parent. In both of his roles—loving son and highly skilled professional—he is hard pressed to alter a course that punishes his dad and tears at his family. Even as medical science extends life, the future seen through his eyes is fraught with clinical and moral quandaries.

My father is eighty-six years old. He was never a big man, except perhaps to me when I was his little boy. At most he was five feet, eight inches tall and weighed 160 pounds. Today he weighs barely 120. Maybe he is five feet two. He teeters on spindly legs, a parched blade of grass in the wind, refusing the walker his doctor recommends or the arm extended in support by those of us who love him. He doesn’t know what day it is. He sleeps most of the time, barely eats. Shaving exhausts him. His clothes hang like a scarecrow’s. Getting him in for a haircut is a major ordeal. He is very deaf but won’t wear his hearing aids or loses them as often as a kid might misplace his marbles. He drives my mother—five years younger—crazy to tears.

My only sibling, the architect, asks me every time we are together (which is often because we all live in the same town) and every time we speak on the phone (which is almost every day because we are a close family now in crisis): “What are we going to do with Dad?” As if there must be a definitive answer, some fix—say, putting a grab bar in the bathroom or increasing the width of the doorways. Something that is according to code.

He asks me this question not just out of fear and frustration, not only out of a realization that it is time for the adult children of a progressively dementing elderly parent to act, but because he figures that his older brother who has been practicing medicine for almost thirty years should know the answer. I do not know the answer. I do not have a pat solution for my father or yours—neither as a son, a man past middle age with grown children of his own; nor as a doctor, a specialist in geriatrics, and a credentialed long-term care medical director.

In the United States today there are thirty-five million geriatric patients—over age sixty-five—and of these, 4.5 million are over age eighty-five, now characterized as the “old old.” The American Medical Directors Association, the professional organization that credentials physicians in long-term care, has certified only 1,900 doctors in the entire country. As we baby boomers go about our lives, frozen into our routines of work and family responsibilities, a vast inland sea of elders is building. By 2020 it is projected that there will be fifty-three million Americans over age sixty-five, 6.5 million of whom will be “old old.” Many of you will be among them. America will be inundated with old folks, each with a unique set of circumstances: medical history and the manifestations of the particular dementing process; medication use; emotional and psychological makeup, including past traumas and present-day fears; family dynamics; support structures; and finances.

Compounding all of this is the sad and frustrating fact that our government appears to have no policy vision for long-term elder care. Our leaders seem to wish—perhaps reflecting our own collective yearnings as a vain, youth-worshipping society—that when the time comes, the elderly will take their shuffling tired selves, their drooling and incontinence, their demented ravings, their drain on family and national resources, and sprawl out on an ice floe to be carried off to a white, comforting place, never to be heard from again.

The Role Of The SNU

For the past nine years I have been the medical director of my hospital’s skilled nursing unit, or SNU as we call it. This unit receives transfers from all areas of the acute care hospital when attending physicians feel that their patients have reached a point where they no longer need acute care services yet are unable to return home. Sometimes it is obvious what we have to do: finish out a course of intravenous antibiotics in a patient with an infected wound or provide a few more days of rehab to a competent elder who has just undergone a hip replacement. But more and more, as our patients grow older and more frail, it becomes clear that the attending physicians have requested that their patients come to the SNU because they don’t know what else to do with them.

Each week I attend the SNU team care conference. Every staff professional who has a role in caring for patients on the unit attends, so around the tables pushed together in the unit’s “activity room,” amid the puzzles and games almost none of the patients has the ability to play, the magazines most no longer have the eyesight or insight to read, sit a registered nurse; geriatric nurse specialist; pharmacist; social worker; activity coordinator; physical, occupational, speech, and respiratory therapists; dietitian; and myself. We discuss each patient in turn and review each medication list. The nurses provide up-to-the-minute reports on medical progress or setbacks; the therapists discuss the rehabilitation status and whether the patient is proceeding toward goals set the previous week; the patient’s weight and diet are reviewed; we hear about the situation at home, the help or lack thereof we can expect from family or other caretakers, and the patient’s insurance and what it may or may not provide. Our main goal is to answer one major question: What are we going to do with this patient? Where can we safely send him—given his medical, social, and financial circumstances—and expect him to maintain his highest level of functioning, his remaining dignity? Very often, we don’t know.

After we review each patient’s case, families are encouraged to attend. Most do not—often, I think, because they are afraid we will tell them there is nothing more we can do. And they are already despondent, overwhelmed by Dad’s downhill progress and the acute event that brought him to the hospital (the pneumonia, the fall, the stroke), bewildered by his deteriorating course (the mental confusion, the weakness) while there, and angered and frustrated in dealing with the bureaucracy (callous nurses, inattentive aides). Even with the attending physicians, who often drift quickly in and out on their rounds like white-coated apparitions.

So now your dad’s physician—maybe the one person you thought could solve all of this, the one person you trusted (although less and less so in these days of “managed care,” because it is hard to trust someone you might have just met or whose name was picked at random from a list of random names)—comes into his room and says, “I don’t think there is much more we can do for him here.” Your mind reels. Nothing more to do? In America? Home of the most advanced health care in the world? The land of Medicare and WebMD? You think about all the glowing seniors—continent, smiling, sexually active—in those drug ads on TV or the aging but robust movie stars on the cover of the AARP magazine. Nothing to do?! What, I’m supposed to take him home like this? You gotta be kidding, doc! And anyway, he was just fine until he came to the hospital!

The doctor sighs. She has been through this many times and still doesn’t quite know how to handle it. Even though the ravages of aging are not her fault, she feels the stern gaze of Hippocrates on her back and wants to do more. She might remind you—tactfully—that this patient, your father, lying with sallow distorted face, partial paralysis, a Foley catheter now hanging out of his penis attached to a bag clipped to the bedrail, was not fine when he came to the hospital. He was not shanghaied from his home where he sat smoking his pipe and reading the Wall Street Journal. Rather, this man, her patient whom she doesn’t know what to do with at this moment, arrived in the ER at 4 a.m. hypertensive and gurgling, brought in by ambulance after he passed out in the bathroom and hit his head on the toilet.

“I think perhaps we can transfer your father to our skilled nursing unit for some rehabilitation,” the doctor says. I say it all the time. Family members are uncertain what this means except that they don’t have to take Dad home just yet and are temporarily grateful. The doctor has postponed answering the “What are we going to do with Dad?” question for a while longer. Every Medicare patient has coverage for one hundred lifetime SNU days if the criteria outlined in thousands of pages of regulations are met. But past the first week or two or three, these criteria usually can no longer be satisfied—not because the patient is well; very few get well once they get to the SNU—but because the patient is “no longer making progress.” The patient is caught in the downward spiral of old age, disability, and dementia.

From here there is no “progress” except toward the grave. And the next way station is chronic custodial nursing home care. Family members will soon discover, if they haven’t already, this essential Medicare insurance coverage fact: There is no Medicare coverage for long-term custodial nursing home care. Unless, of course, an elderly loved one is destitute, in which case he might qualify for some state-sponsored Medicaid assistance. And this often can be quite problematic depending on the level at which his state reimburses its long-term care facilities.

And, typical of our government, as SNUs are being used more and more (as so many medical practitioners find themselves stymied by the “what are we going to do next?” question), Medicare has cut the reimbursements to these units drastically (not limiting the benefit to the patient, of course, which might anger the consuming public), so that many are closing. My own unit shrank to half its size before being shut down by its sponsoring hospital—even as I was writing this piece. Although the CEO told me that this was done because my hospital needed more “acute care beds”—certainly true—closing the SNU coincided with the change in Medicare reimbursements to SNUs that made it financially advantageous for acute care hospitals to jettison their SNUs in favor of more acute care beds.

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Jerald Winakur is a physician in San Antonio, Texas, and an associate faculty member at the Center for Medical Humanities and Ethics at the University of Texas Health Science Center in San Antonio.