Book Excerpts from How To Get The Death You Want: A Practical and Moral Guide
It is my conviction that life no more ceases to be humorous in the face of death than it ceases to be serious in the face of laughter. There is usually no need to tip-toe around the dying person.
Retired University of Arizona professor and fellow Final Exit Network member Timothy Lohman, who reviewed my early manuscript, commented that this book is unique in five ways.
1. A detailed to-do list following the death of a loved one, from day one to one year: a great resource.
2. Why death is needed and the benefits: this aspect is rarely addressed.
3. How best to die: deliberate life completion. We rarely get good advice in this area.
4. Having an advocate: it is one thing to have all your wishes stated and filled out and on file…quite another to get them acted on. We all need an advocate at critical times in our dying process and John spells out all the details of what this entails.
5. Comprehensive perspective on the preparation for end of life from an experienced thanatologist with so many examples of what is in store for each of us!
When given hypothetical situations involving imaginary patients with living wills, nearly two-thirds of 117 doctors surveyed said they would not follow the orders.
Moreover, the term “terminal” is not always justly applied. I have a friend whose mother in a nursing home experienced enormous suffering and withered away to only fifty-eight pounds. Yet the doctors refused to declare that she was “terminal.” It would be best if we were to terminate the “terminal” from physician aid in dying laws!
A friend recently told me about the horrible experience of her father’s death, with all kinds of unwanted and unnecessary medical interventions postponing the inevitable. I was luckily spared a similar experience when my father died peacefully at age ninety-six in 2008. He refused to go to the hospital because he knew better. He had been the executive director of the hospital! He died peacefully in a care home, with me holding his hand and telling him it was alright to die, and he said he was ready to die.
Why Learn About Death?
Among other benefits, death education can help us to:
- Assist the individual in developing a personal eschatology by specifying the relationship between life and death.
- Understand the dynamics of grief and mourning and the reactions of differing age groups to the death of a “significant other.”
- Promote comfortable and intelligent interaction with the dying as human beings that are, indeed, living until they are dead.
- Educate students about death so they grow with a minimum of death-related anxieties, which are too often based upon irrationality and myth rather than fact.
- Understand the role of those involved in the death system and the assets and liabilities of that system.
- Educate consumers to the commercial death market.
- Recognize the variations involved in aspects of death both within and among cultures.
- Cultivate a more realistic comprehension of the consequences of behaviors such as drunk driving, consuming drugs, smoking, and other risky and life-threatening acts.
- Know the false idols and mythology existing in the growing field of death study, the salient heuristic questions, and the great need for learning more.
Furthermore, I postulate that the death-educated person:
- Communicates more effectively, honestly, and openly on intimate matters with loved ones and others.
- Acts to attain his/her life’s priorities and values, and consequently improve health in a self-actualizing sense.
- Recognizes, values and supports those aspects of society that will promote the health of children, the aged and other vulnerable groups.
- Relinquishes control more easily, resulting in a more satisfying, appropriate death for one’s self, and a healthier bereavement for death-educated survivors.
- Is likely to espouse alternatives to conflict-resolution other than violence, war, and related forms of species-specific deadly aggression.
- Acts to effect positive and healthy social and environmental changes.
About twenty years ago I wrote a bit of poetry about the state of those terminally ill among us, who are subject to and vulnerable to the will of others.
dehumanized and marginalized,
drugged and plugged,
medicalized and bureaucratized,
under appreciated, needlessly emaciated and overly sedated,
alive but deprived,
isolated and denigrated,
neglected and rejected,
and sometimes even adroitly exploited.
Contrary to popular belief, most of those who do in fact choose to end their suffering do not do so because of physical pain. These days, physical pain can be managed effectively about ninety-five percent of the time. Mind you, if you are one whose pain persists, it can be devastating. And the fear of recurring pain is as disabling as the pain itself.
In states with physician aid in dying (PAD), only five percent of those who ended their lives did so because of physical pain. The three most frequently mentioned end-of-life concerns are: loss of autonomy (93%), decreasing ability to participate in activities that make life enjoyable (92%), and loss of dignity (78%).
There are many varieties of existential suffering that could lead one to the radical decision to hasten death. These include: fear of or actual abandonment, other fears, anticipatory grief, anxiety, confusion, delirium, dependence on others, becoming a burden, clinical depression, feelings of futility, hopelessness, loneliness, loss of dignity or worth, psychic pain, extreme weariness (filled with lassitude and perhaps feeling desiccated), and more issues that may accompany the dying process.
Good death was operationally defined as the patient’s record indicating no pain (physical) or anxiety (psychological), and having open and honest communication with family (social) in the final assessment by the Support Team Assessment Schedule (STAS) just before death. Using these criteria, only about one-fifth of patients (21.5 %; 137 out of 638) experienced a good death. A dismal proportionate result, don’t you think?
Now is the time for us to raise awareness of the right to die, especially as baby-boomers are becoming the aged. By 2030, an estimated 72 million Americans will be 65 or over, nearly one-fifth of the U.S. population.
…one-quarter of American adults over age forty-five say they would be unwilling to talk to their parents about their parents’ death, even if their parents had been told they had less than six months to live.
As much as I would like to think that the situation is very slowly getting better, and that we are eliminating bad deaths, I just do not see that happening.
Maybe it will improve as more baby-boomers find themselves dealing with the failing health of their parents and demand better. I hope so. Yet presently not a week goes by that I do not hear from someone about the terrible death their friend or family member had to endure. Just today, as I write this, the widow of a dear friend of mine called. She told me about how one of my best friends, whom I had known since 1985, played tennis with many times, and whose friendship I greatly valued, died in agony yesterday.
Despite being in hospice care, he suffered greatly for at least five hours, begging to be put out of his misery, before finally having the relief of dying.
Damn, I hope we change this.
A friend of mine called his longtime veterinarian to ask about hastening death. The veterinarian confided that he used to worry about the morality of euthanizing animals, and so he asked his Episcopal priest, “Is God okay with me taking life this way?” The priest told him that he was responsible for protecting life and that also meant protecting life from suffering. That, and 30 years of fervent thank-you notes from his patients’ families, eased his mind. And then the veterinarian watched his mother’s slow and painful death, and all he kept thinking was, “I would never let one of my patients suffer like this.”