Life's Final Chapters
Photo by SHVETS Productions
By Sterling M. Hawkins, MSW, LCSW-C, LICSW
I’ve been thinking about what matters most at the end of life, and why it matters. It’s not always what you think. Most of the things we hold onto both emotionally and physically change throughout our life cycle. What is well known in the field of aging is that people at the end of life want to feel that their life was complete. How they go about that is expressed in different ways depending on the individual. Along the journey toward end-of-life care, we usually accumulate “stuff” that somehow in the beginning seems important, but over time and at the end often changes value. I believe what becomes important for most, in the end, involves effective communication, care coordination, and physical, emotional, and spiritual support. So how do we get there?
American physicist, Alan Lightman in his collection of writings titled “The Accidental Universe: The World You Thought You Knew, writes “ I don’t know why we long so for permanence, why the fleeting nature of things so disturbs. With futility, we cling to the old wallet long after it has fallen apart. We visit and re-visit the old neighborhood where we grew up searching for the remembered grove of trees and the little fence. We clutch our old photographs. In our churches and synagogues and mosques, we pray to the everlasting and eternal. Yet in every nook and cranny, nature screams at the top of her lungs that nothing lasts, that it is all passing away.” This sentiment echoed by Lightman is acutely evident in death. Death involves a change from a life we know and can observe to what is certain but hidden and unknown. Death involves change.
As Americans, we have a strange relationship with death. We acknowledge it and sometimes even prepare for it. We write and even sing about it. However, few of us welcome it when it comes, if given the chance to do so. Perhaps it comes when life is good, and the summer years of life remain rich and vibrant. Or, before spring has yet to bloom. Or, when autumn leaves fall, or winter’s snow has killed off the maiden grass and the thistle. It always comes.
I had the opportunity years ago to participate in a couple of training programs offered by a hospice organization. What I learned back then helped prepare me for my work today, with those who are in their final years of life. Back then I never gave as much thought to the resistance to death when a diagnosis presented insurmountable challenges for the patients with whom I worked. But now after years of working with the chronically and terminally ill, I see how the subject of death for some patients and their families is terrifying. Particularly for those who were born and raised in the United States. Unlike non-western countries, many Americans have an aversion to death. I believe there are three reasons why this occurs:
[1] We remove death from our lives by avoiding thoughts or conversations about death
[2] We use technological advances to delay death. And,
[3] We separate the dying from society in medical facilities.
As a child, I remember going to funerals when somebody would die that was known to me or one of my parents. On rare occasions, I might get to see the person before they died. If they were sick and, in the hospital, dying at home or in a nursing home, my mother sometimes carried me with her to see them. But in most cases, I just learned about their death from my mother or someone else in the family. In the 1950s and 1960s, health education was severely restricted to those who were not employed in health care. Many physicians and specialists within the medical establishment held a very paternalistic approach to informing their patients and relatives about the nature of their illnesses. In such instances, I recall the expressions of disbelief and phrases the family repeated as heard from the deceased person’s physicians— “Heart just gave out…, died of pneumonia…, cancer took her…, didn’t take care of himself…” Curious kid as I was, I remember thinking to myself, “what exactly does that mean?” It was only later that I realized the stigma associated with dying without the knowledge or power to change the narrative about what we should know, when possible, prior to death’s occurrence. Being African American and uneducated in most cases during the fifties and sixties meant limited access and disclosure about medical practices from those providing the treatment. In the 1960s segregated hospitals were common and legal throughout the United States. Even in so-called mixed-race hospitals, Black patients were often housed on separate floors. The notorious Tuskegee syphilis study a government-led experiment on Black males ran from 1932-1972 and killed over 100 men. People of color were often discriminated against and were restricted from receiving care. As a result, African Americans are often suspicious when their doctors begin withdrawing medical treatment or fail to disclose the implications of their illness. Some physicians fail to engage in end-of-life care planning, the discussion that examines a patient’s disease process, and treatment approaches they can choose from, including hospice. Too often these discussions simply don’t happen and because of the lack of trust, African American patients and their families don’t ask specific questions to become better informed and educated about what choices are available. The conclusion is that doctors need to clarify what is happening medically for those at end-of-life in terms that can be understood while providing education on what treatment options are available. Such attitudes of racism and discrimination still exist today. However, with the digital revolution of the 1990s came the opportunity for the public to access health information that was long restricted and available only to Whites.
Working in both hospital and home care settings as a social worker have taught me priceless lessons about accepting my own mortality and the importance of making adaptations to our life instead of alterations that are in the end untenable and do little to improve one’s “quality of life”.
As I write this, I’m aware that some may argue that quality of life is a relative term. One might say that an alteration for one person may be an adaptation for another. Let me explain.
The modern usage of hospice as a place for and philosophy of end-of-life care began with the work of a British physician named Dame Cicely Saunders. Dr. Saunders began work with terminally ill patients in the London area in 1948. The term “hospice” is defined as a program that gives special care to people who are near the end of life and have stopped treatment to cure or control their disease. Hospice offers physical, emotional, social, and spiritual support for patients and their families. The main goal of hospice care is to control pain and other symptoms of illness so patients can be as comfortable and alert as possible. It is usually given at home, but may also be given in a hospice center, hospital, or nursing home.
One of the key components of hospice philosophy is the discussion of the goals of care. The topic of goals of care deserves its own article. But for simplicity, I will cite a few components when discussing goals of care that can be expanded. Tailoring services to match the needs of the last phase of life requires defining that phase in the most relevant ways. Because the phenomenon of a long healthy life followed by chronic and debilitating illness in the last phase is new in human history. We are just beginning to understand the dynamics.
In a White Paper published in 2003 by the Rand Corporation, the following components were said to be integral to adapting health care to those with serious and chronic illnesses in old age:
· The timing of death remains unpredictable until late in the course of serious chronic illness. Therefore, special arrangements for care near the end of life must be triggered by the severity of symptoms, rather than waiting for a reliable prediction that death is near.
· The major causes of death are all progressive, degenerative illnesses that leave people in fragile health for a long period of time before death. Programs and policies to improve care for chronic conditions need to accommodate the fact that death is the eventual outcome.
· Designing reliable care systems might best build upon the time course and nature of the service needs of a small number of populations, differentiated by the trajectory of disability and symptoms over time, rather than conventional differentiation by care setting (e.g., hospital or home) or diagnosis.
It’s unlikely that such systemic changes will improve health outcomes, so long as the topic of death remains something to be avoided. However, each one of us can do our part to preserve those aspects of life that death cannot take away. I’d like to suggest five ways we can do this: [1] We can begin by being present with those facing death, wherever they are emotionally and psychologically. What this means is that [2] We must not marginalize their feelings. Equally important is [3] Not ignoring them (the dying). At times, I still find this personally challenging. In health care, it is difficult not to develop some emotional attachments with those who receive our services. To avoid these emotions, we sometimes avoid interacting directly with our clients. Being a part of a healthcare team that offers bereavement care for its providers is helpful if your practice is dedicated to those who have fragile health conditions or are terminal. If you are a behavioral health provider, you should [4] Seek to become knowledgeable about disease processes and their treatments. Ask questions. Read the literature. Stay informed and share information honestly with those who inquire of you. The last thing we can all do to ease anxiety, denial, and depression for those facing death is to [5] Listen more and talk less. I believe this to be essential and one of the easiest ways to connect and engage with those facing death.
Cambridge University philosopher Stephen Cave in his book titled “Immortality: The Quest to Live Forever and How it Drives Civilization” gives a fitting conclusion to the narrative of death, one he calls the “Mortality Paradox”. He writes, “We are therefore blessed with powerful minds yet at the same time cursed, not only to die but to know that we must…. This is the central theme of philosophy, poetry, and myth; it is what defines us as mortal. Since we attained self-awareness as Michel de Montaigne wrote, ‘death has us by the scruff of the neck at every moment.’ No matter what we do, no matter how hard we strive, we know that the Reaper will one day take us. Life is a constant war we are doomed to lose.”
In our journey toward the end, as healthcare providers, let’s remember to assist those who are already there watching and waiting for the final chapter to end their life’s story.
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References:
Hospice of Holland Inc. (2019) A Brief History of Hospice. Retrieved on 17 September 2022. Available at https://understandhospice.org/brief-history-hospice/
Lynn, Joanne & Adamson, David M. (2003) Living Well at the End of Life: Adapting Health Care to Serious Chronic Illness in Old Age. Retrieved on 17 September 2022. Available at https://www.rand.org/content/dam/rand/pubs/white_papers/2005/WP137.pdf
Michas, Frederic (2022, March 3) Number of U.S. hospice providers from 2009-2019. Retrieved on 18 September 2022. Available at https://www.statista.com/statistics/339895/number-of-hospice-providers-in-the-us/