On (Not) Letting Go

imageHaving read, and liked, Jonathan Kozol’s previous books Rachel and Her Children and Amazing Grace, I looked forward to reading his recent medical memoir The Theft of Memory: Losing My Father One Day at a Time (New York: Broadway Books, 2015).

While there were parts of the book that I appreciated, including Kozol’s candidness about the relative loneliness of his life and his reasons for wanting to extend his father’s life as long as possible even after Alzheimer’s disease had ravaged his father’s mind and body, overall the book was frustrating to read. It felt as if it had been written in a hurry and not edited carefully. For instance, there were frequent awkward and overly long (as in six to seven lines in length) sentences that detracted from the story. And I really did not care at all about the long sections of the book pertaining to Eugene O’Neill and his family and personal dramas. It felt more than unethical for Kozol to have mined his psychiatrist father’s notes pertaining to his patients, including O’Neill.

Kozol comes across in this book as an overly-privileged and entitled man who blames all of his father’s doctors for under and mis-treatment of his father’s health conditions. He does on occasion show some self-insight, as in this passage: “At some level, I think I was aware that selfish motivations of my own might very likely be at stake in the decisions I was making. …As nonresponsive as he often was, and physically enfeebled as he had becomes, I could not escape the crazy thought that I still needed him.” p. 151. That part of the book, a look inside the decision-making process for a family member such as Kozol who defies medical advice and staunchly fights for his father’s life to be medically extended as long as possible, made it a worthwhile read. That is a mindset that I do not understand, both as a medical provider and as a family member. Having read this book, I do have greater insight and compassion for people who hang on to their loved one’s lives far past what would appear to be prudent.

A Practical Man and Modern Medicine: The Ending

IMG_2700 - Version 2My father died this morning. He died peacefully in his bed at home surrounded by family members, trusted caregivers, and my late mother’s artwork. This photo, which I took a few weeks ago, shows my father ‘getting his daily exercise’ doing laps inside his house using his walker, under the watchful eye of my mother (the painting is her self-portrait about her own heart disease). My father died from the effects of congestive heart failure. When he died, my father wasn’t exactly wearing his boots and gardening gloves, but very close to it. Our family harvested sweet potatoes yesterday from my father’s backyard garden.

Four years ago, when I began this Medical Margins blog, my first post was about my father’s (and our family’s) struggle to negotiate a dignified and peaceful home death for him amidst the Kafkaesque nightmare of our health care system. (See “A Practical Man and Modern Medicine” 9-26-10). I also wrote an essay about my slightly Quixotic efforts to be my father’s cross-country patient advocate and health care proxy through his countless hospitalizations and transfers in and out of nursing homes and home heath care. (See “Home Death” in The Johns Hopkins Public Health Magazine, Special Issue 2013).

During his last hospitalization (a bounce-back hospitalization after only two days at home and before hospice was finally ordered), my father was moved to six different hospital rooms on the same cardiac floor in less than a week. He became more and more distressed and disoriented with each move. He was being treated with three different antibiotics (two IV) for two different hospital-acquired infections. This was despite the fact that my father had clearly documented Advance Directives requesting none of these unnecessary ‘heroic’ measures. It took a direct plea from me to the head of cardiology to have the antibiotics discontinued and my father released to home hospice. That was only three days ago. His (nonprofit, religious-based) home hospice was terrific.

I’ve realized during this final surreal (is ‘Woolfian’ a word? it should be–it has felt very much like her writing in The Waves) month, that we have created a Frankenstein monster: ‘the creature’ or ‘the wretch’ of our health care system (especially the hospital). I’ve realized that my frustration and anger over my father’s end-of-life care is not as simple as displaced grief over losing my father. My anger can not be directed at any one physician or nurse or hospital. Rather, my anger is really dismay (bordering on despair) that I–that all of us– can have been a part of the maintenance of such a sad and broken wretch. Apart from putting all of our hospitals and nursing homes on (the melting) ice flows along with Frankenstein’s monster, what can we do to reform and redeem this creature we have created?

To the Reverend John Edward Ensign, my force-of-nature father: rest in peace.

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*The Institute of Medicine just released a fascinating study addressing this problem and question: Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, 9-17, 2014.

** The NYT recently published a Pulitzer-worthy article by Nina Bernstein: “Fighting to Honor a Father’s Last Wish: To Die at Home” (9-25, 2014).

 

God’s Will Scale

The One Slide: End of Life Questions
The One Slide: End of Life Questions (Photo credit: stevegarfield)

It’s official: they have a research scale for everything, including God’s Will. In dealing with my elderly father’s illness and end-of-life (EOL) decision-making/interface with the health care system, I kept remembering research I’d read about religiosity and EOL choices. Higher religiosity is associated with preference for life-prolonging medical treatments. This may seem counterintuitive at first, but perhaps people with higher religiosity are less likely to doubt the limits of medical science and our health care system. Researchers developed the Gods’ Will Scale to measure degree of religiosity (Winter, et al, 2009, Preferences for life-prolonging medical treatments and deference to the Will of God, J. Relig Health. 48: 418-430) The New York Times today has an interesting Opinion piece related to this topic: Why Do Americans Balk at Euthanasia Laws?  Contributors to this article point to the fact that the US population scores much higher on religiosity scales than do our peer nations. I should mention again that my father is a retired Presbyterian minister living in the conservative and highly religious state of Virginia.

I praise God and every other possible Higher Being that I live in a relatively enlightened state—that state being Washington State, which joined Oregon in the Death with Dignity Act. We also have a relatively active and from what I hear effective POLST Paradigm program: Physician Orders for Life-Sustaining Treatment Paradigm. POLST Paradigm program is designed to improve the quality of care people receive at the end of life. As they describe the program “It is based on effective communication of patient wishes, documentation of medical orders on a brightly colored form and a promise by health care professionals to honor these wishes.” From what I understand, POLST was started in response to complaints from patients that their EOL wishes as declared on Living Wills/Advance Directives were not being honored within the health care system. There have been cases of patients tattooing “DNR” (Do Not Resuscitate) on their chests in an attempt to have their wishes honored. Supposedly this works as long as rescue personnel bother to read their tattoo.

On the POLST website they describe patient-centered end-of-life care as, “Effective communication between the patient or legally designated decision-maker and health care professionals ensures decisions are sound and based on the patient’s understanding their medical condition, their prognosis, the benefits and burdens of the life-sustaining treatment and their personal goals for care.”

All people over the age of 18 are advised to have a Living Will/Advance Directives. In addition, people with a life-limiting illness should have a POLST. In Washington State POLST forms can be signed by physicians, nurse practitioners or physician assistants–that, of course, varies state to state according to their scope of practice regulations. Virginia has not yet adopted the POLST Paradigm.

In my opinion, my father has not received patient-centered end-of-life care. Instead, he received costly life-sustaining medical treatment and remains hospitalized in ICU. But at the same time, he is up and walking with help, complaining about the hospital food, and ready to get back to his work of taking communion to people in nursing homes. So, maybe it’s God’s will?