Posted by: Harold Knight | 02/13/2011

Can I be this serious in public?

(Note: nothing here is original; it’s my personal take on common knowledge and research. My take is serious almost beyond my ken, but NOT hopeless or nihilistic. This posting continues yesterday’s.)

In 1989, when the number of persons dying of HIV-AIDS had reached incomprehensibility—before antiretroviral drug treatment became standard—the Hospice at Mission Hill opened in Boston for the care of persons dying from HIV-AIDS. It was an extraordinary place, staffed with nurses, chaplains, housekeepers, cooks, and an army of volunteers who did everything from emptying the garbage to sitting with the 18 residents—reading to them, talking with them, holding their hands while they rested so they knew they were not alone.

The view from Edmonton

The view from Edmonton

For two years I received the most precious gift I know as one of those volunteers twice a week for a four hour shift. When I started, friends confronted me about the “danger” of being in such a place. Obviously no danger existed. We were given rigid training and, as anyone with more than an urban legends understanding of HIV-AIDS knew, we did nothing through which we could have contracted the disease. Danger? No. Privilege.

The gift I received was being with several persons at the end of their lives, three at the moment they died. The greatest honor a person can receive is to be with another human being at the moment of his or her death. Emptying a few bedpans, arranging a few flowers, reading a couple of novels aloud,or  giving baths was nothing compared with what the residents of the hospice did for me.

Two of the men I was with when they died were young gay men. The other was a pimp and drug dealer from the streets of Lawrence. (One of his “girls” was a resident of the Hospice when he died.) He was the resident I knew best and whose death affected me the most.

In addition to teaching me to live the past twenty years without denying the reality—the certainty—the ultimate moment of meaning for myself as a human being—those men gave me the gift, the honor, of carrying with me until the moment I die a part of themselves. I cannot explain, but I know and own a sense of the reality of life and death that many of my friends do not because I own the witness of that moment for those three men. 

My late partner’s death was the most grievous and the most joyful moment of my life so far. My sister and I were with our mother at the moment of her death, and I have the sense that we know her in a way no one else does. I had the gift of being present with my brother-in-law, my sister, and her daughters as they prepared for and experienced his death.

If Gallup polls are correct, 80% of Americans believe at least to some degree that “death is swallowed up in victory,” and that “whosever believeth will not perish but have everlasting life.” Yet we live our own lives and structure our caring for others who are approaching death as if it will not happen or, at the very least, we can postpone death indefinitely. Impossible as it seems to me, I know people my age who have never been with another human being at the moment of death. 

In about 1975 a friend who was terminally ill gave me a copy of Ernest Becker’s The Denial of Death. It is often quoted in writings like this. Perhaps the most-often quoted sentence from the book is, 

The idea of death, the fear of it, haunts the human animal like nothing else; it is a mainspring of human activity—designed largely to avoid the fatality of death, to overcome it by denying in some way that it is the final destiny of man (1).

Our medical science allows us to (is designed to?) put off as long as possible any thought of death, and to cheat death at every turn. We think there is no disease, no injury that cannot be healed. We believe medical professions exist to prevent death. And the death of a patient is

. . . to be avoided at all cost. Trained to further entrench death as failure, physicians must struggle with their own conceptualization of the meaning of death. . . Denial of the possibility of death manifests itself through the ordering of innumerable tests (easily accomplished through the scientific advances of medicine), the inability to initiate discussions of discontinuation of ‘‘active treatment,’’ or the inability to do so when suggested by the interprofessional team, patients, or families (2).

Because we believe we will not die, we have not as a society—or even in our families—paid enough attention to learning how to die. We need, I think, to learn how to die. How to refuse care that will merely keep us alive. How not to deny reality. I wrote yesterday of an article that I suggested not be read because it is too difficult.  I have changed my mind. I cannot summarize the article, but I can tell a personal experience that, I think, is an example of Hardwig’s discussion of “Going to Meet Death” (3).

In 2002 I had a life-affirming experience I could not have experienced had I not known the Lawrence pimp. I went with my ex-wife to her appointment with her oncologist in Edmonton, Canada, to decide whether or not to restart her chemotherapy for breast cancer (please note ** below). Her conversation with the doctor was long and careful. The doctor was in no hurry and was present and empathetic throughout.

Ann asked her questions. What will the chemo be like? Will it debilitate me? And, most important, will it prolong my life? The doctor thoughtfully answered her questions. The chemo would make her miserable at times (Ann had experienced this). The treatment would minimally prolong her life.  Finally Ann said, “The chemo will make me miserable, but there is no guarantee I will live longer. I have the choice of living fully for six months or living miserably for a year.” The doctor affirmed her understanding. Ann said simply, “No, thank you.” The doctor put her arm around Ann, and they wept together. We stayed there for about fifteen minutes longer during which time the doctor asked Ann such things as whether or not she needed help finding people to talk to about dying, if she had all the support she needed, if she was in a physically comfortable place. And then the doctor wrote the order for hospice care and set appointments to see Ann regularly.

We went to a lovely tea shop and had tea. We went to Ann’s church and sang through a favorite vespers service with both knew. I stayed a few more days. Ann went to Brazil and to China. When she became extremely weak and ill in about six months, I went back. She was organized, in charge of her affairs, and at peace. She explained what I needed to do as executor of her estate. I came home, and she died a week later.

She fulfilled a dream

She fulfilled a dream

That is an example of Hardwig’s “Going to meet death.”  He says we must learn to make medical choices so that we do not live “too long.” So we are able to exercise our autonomy and make decisions about our own death. All of us know someone who has lived too long, for whom science has taken the place of nature.
______________________
** The myth that Canadian health care is some kind of horror is preposterous. I have spent enough time both with Ann and with her step children and grandchildren at Canadian clinics to know otherwise. The hype by Sarah Palin and others about “death panels” is evil. It was [is] the worst example of playing on our denial of death to achieve political gain. The fact that it gained any traction at all is evidence of the denial of death.
(1) Becker, Ernest. The Denial of Death. New York: The Free Press, 1973. Quoted in: Tucker, Tara. “Culture of Death Denial: Relevant or Rhetoric in Medical Education?” Journal of Palliative Medicine 12.12 (2009): 1105-1108.
(2) Tucker, ibid.
(3) Hardwig, John. “Going to Meet Death: The Art of Dying in the Early Part of the Twenty-First Century,” Hastings Center Report 39. 4 (2009): 37-45.

Advertisements

Responses

  1. Thank you so much for sharing Ann’s story. I did not know the circumstances, but her decision is consistent with the forthrightness with which she dealt with reality. I remember when she concluded that if the church was unwilling to ordain women, then the church was treating women as children. She went to communion and folded her hands in front of her for a blessing as a child. What an example of how to live and how to die.

    Like

  2. Hi Harold,
    As always your writing opens views for me…and of course, knowing Ann, knowing you, I expected some deliverance. It came…tho I waited to read this til after I got back from driving to see my Mom (turned 88 on 2/17), Stepdad (has Parkinson’s) & stepsister (has patience of Job…living in house with parents). End of life feelings & issues are just plain shitty hard. Thanks for sharing some of Ann’s (and yours) beauty and vision…had time to cry and feel sad but centered.

    love you, Elaine

    Like


Categories

%d bloggers like this: