Dementia and the Goals of Medicine

20 Sep

Here is a review I wrote on Making Rounds with Oscar, a book that opened my eyes to the experience of people living with dementia.

In a 2007 issue of the New England Journal of Medicine, amid the usual fare of the latest and greatest in biomedical research, there appeared a short piece about a cat named Oscar.  Living as a pet in a nursing home dementia unit, Oscar demonstrated an uncanny ability to predict which of its residents were about to die.  The furry creature’s presence at a person’s beside invariably signaled that life’s end was near.  The story generated a good deal of interest, earning the feline fifteen minutes of fame.  Now, years later, a book entitled Making Rounds with Oscar chronicles a doctor’s discovery of the animal’s special gift.

The author, David Dosa, is a geriatrician at the Steere House Nursing Center in Rhode Island where Oscar lives.  He begins the book by explaining why he made the unusual choice to specialize in care for the elderly.   I call his career decision unusual because gerontology remains among the least popular fields of practice for medical students to enter.  Geriatric fellowship training programs at even the most prestigious institutions are sometimes unable to find willing candidates.  Why is this the case at a time when our aging population needs more practitioners equipped to care for its elderly members?  In a fee-for-service system that pays physicians for performing procedures and seeing a high volume of patients, the time-intensive nature of geriatric medicine makes it a specialty with some of the lowest reimbursement for the greatest amount of work.   And while many young people enter medicine hoping to someday be the celebrated bearers of miracle cures, geriatric care focuses on helping individuals adapt to the inevitable frailties and limitations that come with age.

But Dosa does not lament or even mention what he has foregone in money, power, and prestige. The fulfillment he derives from his vocation among the elderly does not seem to leave much room for feelings of martyrdom or envy.  It is a fulfillment he says comes from bearing witness to the stories of his patients as they live the last of their days.  These stories form the heart of the book and Oscar’s tale serves as an ideal vehicle for sharing them.

When a trustworthy nurse at the Steere House tells Dosa about the cat’s extraordinary talent, he is at first skeptical and sets about investigating the matter.  One by one, he interviews the families of the patients Oscar accompanied in their final hours.  Since all of them suffered from dementia, a revealing portrait of this devastating illness emerges.  Dementia is characterized by deterioration in cognition, resulting in behavioral problems and difficulty performing the basic activities of daily life.  Alzheimer’s, defined by the accumulation of certain proteins in the brain, is the most common form of dementia, accounting for 60 to 70 percent of cases.  Dr. Dosa’s clinical expertise and the poignant narratives of patients and families dealing with this disease combine to make the book a valuable educational resource.  In fact, the afterword contains some explicit guidance for those doing the admirable and arduous work of caring for people with intellectual disabilities.

But beyond being useful, Making Rounds with Oscar’s depiction of dementia speaks profoundly to the nature of personhood and the practice of modern medicine.  Since at least the time of John Locke, philosophers have reflected upon the idea of personal identity.  As an individual changes, what remains constant and defining, allowing him or her to be considered to be the same person over time?  For the loved one of somebody with dementia, this can be much more than a matter for idle speculation.  When the essential qualities and traits of your parent, spouse, or sibling are no longer present in their diminished state, who is it exactly that you are caring for and relating to?  The son of one Steere House patient implicitly responds to this question by remarking “I said good-bye to my mother a long time ago.  Now I’ve just fallen in love with this little lady!” Other characters in the book do not share such a sanguine approach to what has been lost.  When one day, after sixty-three years together, the wife of a man named Frank Rubenstein no longer recognizes him, he never again returns to the nursing home to see her.  Though Rubenstein continues to call daily to check on his wife’s status, he cannot bear to see the fear and suspicion on her face when she encounters him as a stranger entering her room.  But even as dementia surrounds a self in isolating darkness, creative acts of engagement can sometimes reconnect us, if only briefly, to the person we once knew.  For example, Jean Ferretti, the wife of the pioneering musical composer and Steere House patient Ercolino Ferretti, reports to Dosa that “one of the things I found most interesting about my husband’s disease was that even toward the end of his life he responded to music.  Here was this man who could no longer do much of anything.  Sometimes he would get agitated.  If you put on a jazz record, though, he would just sit there contentedly for hours.”  As dementia transforms these individuals’ relationships with their affected loved ones, what does not and cannot change are the covenantal bonds they share with them.   No matter how faintly these victims of dementia resemble who they once were, to their family they are still father, mother, husband, wife, sister, and brother.

Closely related to the issue of personal identity is the question of what makes human beings valuable and worthy of care.  The residents of the Steere House dementia unit have lost capacities that many people see as essential for a meaningful life.  In their impaired state, it seems that they can no longer contribute anything to society.  Given these realities, is the tremendous work required to care for them warranted? Based on a certain utilitarian calculus, the answer to this question is no.  But if all people are considered to have intrinsic dignity and worth, then a radically different response is demanded.  For instance, in the Christian tradition, the Gospel is most manifest when people embody Jesus’ special love for those who can offer nothing in return.

But we must not confuse our sacred call to care for people with dementia with the automatic, reflexive use of all available technologies in efforts to extend their lives.  When a medical intervention is more likely to be burdensome than beneficial, the more loving course of action may be to aim for comfort rather than the prolongation of life at all costs.  This is illustrated in a heartrending story about a frail, debilitated Steere House resident named Saul Strahan.  When Strahan develops a severe infection, Dosa discusses his grave condition with Strahan’s daughter and recommends against sending her father to the hospital’s intensive care unit (ICU) for aggressive and likely futile treatment.  He suggests instead that Strahan remain in the familiar surroundings of the nursing home with a focus on providing him a peaceful death as the infection worsens.  Viewing this approach as giving up on her dad, she insists that “everything be done,” even if there is very little chance of his recovery.  Dosa later finds a Strahan in the ICU on life support–a breathing tube down his throat, a central line in his neck, and a dialysis machine at his bedside about to be used as a substitute for his failing kidneys.  Dosa is saddened, but not surprised to soon thereafter learn of his patient’s death.

All available medical technology had been utilized on this man’ behalf.  But amid the heroic efforts to save his life, nobody was really present with him during his lonely transition into the unknown.    This tragic irony reflects many patients’ and practitioners’ conflicted experience of contemporary medicine.   The past century witnessed the emergence of biomedical innovations our ancestors could have scarcely imagined.  We can administer vaccines and antibiotics to prevent and eliminate previously fatal infections.  We can replace insulin and other vital hormones when our bodies’ production of them is insufficient.  We can open obstructed arteries during heart attacks and strokes, halting lethal damage to our hearts and brains.  We can cure certain cancers with surgery, radiation, and chemotherapy.  This growing, seemingly limitless capacity to triumph over afflictions before which humans had hitherto been helpless has radically altered our expectations of health care.   For the first twenty-three centuries of Western medical practice (dating from the time of Hippocrates), clinicians’ primary role was to accompany and guide their patients through the experience of illness.  In contrast, now that efficacious interventions are available, achieving desirable results is what matters.  Yet positive outcomes are not always possible.  Indeed, despite modern medicine’s numerous successes, death is the still the ultimate outcome for us all.  And as the focus has turned to most efficiently fixing patients’ problems, the healing, pastoral aspect of care that once constituted the heart of medicine has been neglected, to the frustration of patients and physicians alike.  The simple example of a cat lying lovingly at a dying person’s side calls health care practitioners back to the sacred role of being a compassionate presence.

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Posted by on September 20, 2013 in Uncategorized


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