What are the most pressing requests, concerns and desires of the actively dying? How can we best provide authentic comfort and support to loved ones preparing to cross this final threshold? How can we work toward the best possible final phase of our own lives? We can all benefit from grappling with these questions and bearing intimate witness to the answers— – not only at the end of our lives but at this very moment.
Chapter 1: An Invitation
As the renowned constitutional scholar, Ronald Dworkin has written, “To make someone die in a way others approve, but he believes a horrifying contradiction of his life, is a devastating, odious form of tyranny.” I invite you to join me in resisting this tyranny. May we all come prepared to the ultimate and vital journey. Let us strive to find our way forward with courage, clarity and conviction. Let’s clear the path, light the way, and enable anyone who so wishes, to finish strong.
Chapter 2: Talking About Death Won’t Kill You (But It Could Improve Your Life)
No one wants to die prematurely, but concentrating on only one kind of hope—the hope for a cure or an extension of life—cheats a dying person out of the chance to make the best decisions and the best use of their valuable time.
Everyone hopes first and foremost to be cured. But when cure is not possible, other priorities rightfully rise in importance—priorities like effective comfort measures, the energy and clarity for meaningful conversations, and the capacity to enjoy what time is left.
Chapter 3: Overtreatment and Diminishing Returns
An astonishing 40 percent of Americans believe that medical technology can always save their lives; many fewer Europeans share this fantasy. The old joke that Americans believe death is just one more disease to be cured is no longer a joke.
Chapter 5: Hope & Heroism
Physicians should not try to subvert that American value in their professional lives by forcing patients to conform to their own religious beliefs. If they cannot accommodate a patient’s freely chosen and legal choices, they should be swift to divulge that and send their patients off with good wishes to a physician with a more tolerant moral philosophy.
Chapter 6: Hospice: The Healing Option
Underpinning the PCIA law is the belief that patients have a right to know when medical intervention offers only very little chance to prolong their lives. They need to know that as illnesses advance, aggressive treatments usually offer diminishing returns on the investment of energy, suffering and displacement from the relative comfort of home. And they have a right to learn about palliative therapies that could improve the quality of the time remaining to them.
Dr. McCullough defines the practice of Slow Medicine as “using the allotted time health professionals (and families) spend with our aging patients differently and making better, more appropriate decisions more slowly and over a more extended period of time.”
Chapter 7: The Secret of Slow Medicine
Unfortunately, people who face dementia are not immune to a medical system that subjects people to needless tests and treatments. They too are vulnerable to being placed on a conveyor belt of automatic and unwanted medical treatment. As a result, people with dementia often live under treatment for eight to ten years, trapped in a medical system that assumes the primary goal of care is to extend the absolute quantity of life when in fact, few people would choose that course if given the option.
Chapter 8: Escaping Dementia
When asked his response to the objections cited by the opponents in the church, Booth reflected that many such people had told him that God had His own plan for the end of his life. And then he said: “I don’t believe God has any kind of plan that causes me to suffer in the latter years of my life. I’ve served Him well. I was put on the earth with a certain set of skills, I was told to go out and do the best I can with what I was given… and along the way, help others if I could. You’re going to get blindsided, you’re going to have things happen that you don’t understand, but keep going, you can have a good life.
“And I’ve had a good life. I had a lousy childhood, so I’ve come out of a rough spot and made a good life for myself. I want folks to be able to go out with dignity.”
Chapter 9: Inside a Growing Advocacy
In 2001 I spent a week at Ghost Ranch, in New Mexico, in dialogue with a community of religious scholars and devout, thoughtful individuals. During a discussion of this very issue one minister responded by saying, “Who knows the mind of God? Might not God also be working deliberately through those who do choose to end their lives?”
Chapter 11: Space for Sacred
Navigating the final stages of a progressive illness like ALS or Parkinson’s, emphysema, cancer or heart disease is hard. Hard choices come up. Decisions must be made. Everyone should know this: Navigation like this is likely in your future, either on behalf of a loved one or for yourself. To be successful, we need to learn to reveal our hopes and fears, ask important questions, and expect candid answers from our healthcare providers. At first this may seem too difficult. But like a muscle, exercise will strengthen our ability to do it. We must start early, years before a medical crisis occurs.
Chapter 12: It’s Harder Than You Think (But You Can Do It)