by Joanne Tubbs Kelly
She Writes Press (2022)
Walking Him Home is an account of what it’s like to have a neurodegenerative disease and reach the point of wanting to die. Most approved prescriptions for medical aid in dying are written for persons with cancer, whose six months prognosis is easier to determine.
Joanne Tubbs Kelly describes the dying of her husband, Alan Kelly, from multiple systemic atrophy (MSA), a rare condition of the nervous system that damages the nerve cells in the brain and leads to a loss of balance, gastrointestinal issues, and incontinence. At the end, one cannot get out of bed without a mechanical lift. Everything that has physically defined one’s life is gone. We watch this progression on every page, loving that Joanne and Alan care for each other and hating that there is so much suffering.
Joanne and Alan found each other late in life, after previous marriages, and hoped that theirs would never end. The first chapters of the book recount their life together. Joanne was a successful corporate executive. Alan was a salesman who decided after they married that he’d rather be a handyman. He was outgoing, talented, and self-motivated, and had many clients. He did not mind that Joanne was smarter. “I like smart women,” he said.
When Alan could no longer endure the loss of the ability to do the things he loved, he asked Joanne to help him die. They were Colorado residents. Colorado authorized medical aid in dying in 2016 and he needed Joanne to arrange the appointments that would be needed to have his request approved. His doctor had admitted him to hospice which satisfied the requirement that his life expectancy was less than six months. Joanne was deeply conflicted. Alan was only 69 and she wanted many more years with him. She didn’t, however, flinch. She knew that it was what he wanted. This dilemma is central to what every couple must face when one of them wants to use medical aid in dying: how does a family member summon the strength to help a loved one leave, when that person’s leaving is the last thing one wants?
The book tells us how. Joanne took care of herself. Throughout the duration of Alan’s illness, she saw a therapist. She made time for herself once a week to be alone. She kept a journal, and when she saw that a book might be emerging, she joined a writing group. The result is an engrossing memoir of two people deeply in love, and could be read for that reason alone. Joanne describes the challenges of dealing with a debilitating illness, the clinical trials they sought, and the doctors who disagreed with each other. She describes misunderstandings that can happen in an assisted living facility. Choosing the date on which he would die, as Alan did, made the ending definite. It is very different from sitting beside a hospital bed with intravenous tubes and ventilators, providing the hope that life will go on, and maybe even get better.
Alan’s final day was the way he wished it to be. Joanne, their children, a few close friends, and their minister were present, with a Willy Nelson song playing in the background. They redeclared their love for each other. Everyone had a chance to say goodbye, as had many others in the preceding several weeks.
Since Alan’s death in 2020, Joanne has become an advocate for medical aid in dying. She has an online blog to which anyone may subscribe: joannetubbskelly.com/blog, in which she discusses diverse issues such as how death doulas can be helpful, how Canada enacted its law, what dying in the Netherlands is like, and issues that arise for disabled people. It is published once a month.
Those who have read Amy Bloom’s memoir, In Love, will notice some similarities. Bloom’s husband and Alan were both vital men who loved their intelligent wives. They both sought their wives’ help in ending their lives. They both had younger brothers named Paul who died early. They both died in January 2020 and had their memorial services on February 8, 2020. They are both now the subjects of important books. Joanne Kelly hopes that the appearance of the two memoirs so close together will be helpful to others as they navigate whether or not to choose medical aid in dying.
Review by Susan Gillotti, PCV Board member
by Anita Hannig
Sourcebooks (May 3, 2022)
Books about medical aid in dying are beginning to appear with frequency. It’s as if everyone now--doctors and patients alike--has recognized that we can’t keep pretending that we don’t die.
Anita Hannig is a cultural anthropologist at Brandeis University where she teaches classes on the cultural dimensions of medicine and the end of life. She spent five years in Oregon and Washington meeting families in living rooms and hospital suites, listening to proceedings in courtrooms and at public hearings, and visiting state archives. For eight months, she worked as a hospice volunteer and accompanied patients during the final weeks of their lives. What she learned is in this book, and will be of value to everyone working to craft MAiD laws in states where they are not yet authorized and in states to improve the laws they already have. Especially helpful will be “Restrictive Laws” (Chapter 3) in which she describes the spectrum of questions lawyers, physicians, and activists had to consider when they drafted Oregon’s law in the 1990s.
From the start, euthanasia was a sticky point, supported by those who wanted to help dying persons who cannot swallow, and opposed by those who felt it unacceptably required a physician directly to end a life. “What is the moral difference?” one advocate argued, “between writing a prescription and injecting a needle?” The debate is no less intense today.
Hannig questions whether the laws enacted in America, intended to reduce unnecessary suffering, have sometimes had the opposite effect. “Every year,” she writes, “hundreds of eligible patients who apply for an assisted death are so close to the end of their life, they die during the mandated waiting period that kicks in after their first oral request. Many wade through the dense bureaucracy of these laws while their energy and health are fast declining. Patients with open-ended degenerative diseases, like Parkinson’s or ALS, cannot qualify unless they are within imminent reach of their death. And those at risk of losing their ability to self-administer the lethal medication worry constantly that they might miss the precious window when they are able to take the drugs.”
Hannig confronts the question many are now asking, of whether Western medicine has gone too far in keeping us alive. Zack, the son of one of the patients she followed, said of his father that he was being kept alive years past when he would have naturally died. “If he stopped all the pills that keep him going and had his pacemaker removed, he would be gone within a week. That’s no different than saying, ‘I’m going to speed it along by taking something to do it.’ The end result is the same.”
Finding a way to bring consensus among lawmakers is what has to happen, Hannig writes, and she discusses the range of questions that will have to be answered. How do we deal with the Catholic health system? How do we change restrictive laws to allow greater access and at the same time not foster abuse? How do we change the bureaucratic maze that is overwhelming, and resolve the difficulty for doctors whose professional ethos tells them to preserve and possibly extend life, while on the other hand, teaches that they have a basic duty to relieve suffering? Not all doctors recognize existential suffering. Dame Cicely Saunders, founder of the first modern hospice in London in 1967, coined the term “total pain” to describe it, noting that existential suffering can be just as agonizing as physical pain.
Hannig writes movingly of how medical aid in dying can soften grief. It allows time for reconciliation with loved ones. “Assisted dying,” she writes, “is much larger than swallowing a lethal dose of medication: it changes how we live, how we die, and how we envision our future…It introduces new possibilities for human beings to direct the end of their lives…(and) to think about how they want to leave things with their loved ones, repair relationships, and plan for a personalized departure… Loved ones didn’t feel as blindsided.”
The Day I Die is a worthwhile addition to the canon of books now being written about medical aid in dying. It is an especially interesting read side-by-side with Stefanie Green, MD’s book on MAiD in Canada, This is Assisted Dying.
Review by Susan Gillotti, PCV Board Member
by Amy Bloom
Random House (March 8, 2022)
I am inclined to call this book a “page-turner”. But how can that be? It is a book about the author’s husband, Brian, who, by the time he is diagnosed with Alzheimer’s disease, is also told that the process of sinking into severe dementia will be rapid. This vibrant man in his 50s is determined to end his life while he still recognizes and can interact with his wife and those he loves.
However, he struggles to find an acceptable path to accomplish his goal. Even if Brian were to move to a state like Vermont, or any of the other nine states plus Washington, DC, where Medical Aid in Dying (MAID) is legal, he would not be likely to qualify. All states have specific requirements for a person to use the MAID process. They must be lucid and able to communicate to two doctors their wishes, as well as the rationale for ending their life, and they must be within six months of death. Most likely by the time Brian would be six months away from death, he would not be lucid or able to communicate clearly and dementia is not always recognized as a terminal illness.
At one point, when it seems there is no acceptable way for him to accomplish his goal, he considers using a gun. But that is an anathema to him, largely because of the negative impact such an act would have on the people he loves.
Amy Bloom is a professor of Creative Writing at Wesleyan University who has written several award-winning books on a variety of subjects. The topic of this book is obviously very personal, as she chronicles her husband’s slipping into Alzheimer’s. However, the book also puts this part of their story in the broader context of their marriage. It is a second marriage for both of them and she includes in the story the joys and challenges of blending two families. A real plus in reading the book is enjoying Bloom’s excellence as a writer.
While Amy Bloom and her husband did not live in Vermont, they also knew moving to one of the ten states or Washington, D.C. where MAID is available would not help them. She rightly says: “The right to die in America is about as meaningful as the right to eat or the right to decent housing; you’ve got the right, but that doesn’t mean you’re going to get the goods.” Brian understood this. Soon after he was diagnosed, he expressed interest in going to Switzerland to end his life. As the weeks and months went on, it began to look like the only viable option.
Amy contacted Dignitas in Zürich soon, and learned that this too, was a complicated process. Dignitas is a nonprofit organization offering accompanied medical aid in dying. As the author describes, “For the last twenty-two years, Dignitas has been the only place to go if you are an American who wants to die and if you are not certifiably terminally ill with no more than six months to live.” However, Switzerland has no interest in allowing depressed patients to take advantage of its “right to die” process. Doctors there want to be as certain as possible that anyone who uses the process is clear thinking, not depressed, and not being pressured by anyone. Bloom learned that Brian needed to provide various documentation, including a brain scan and a report from a psychiatrist. There were requirements that took weeks to satisfy, and 56-year-old Brian was losing agency quickly. He continued to have lucid periods, but the emotional contact with friends and family, including his wife, began to diminish.
Not surprisingly, the way people deal with the end of their lives, including those who do so on their own terms, is very individual. Brian did not want to discuss their plans with others, including most of their family. Virtually no one knew they were getting on a plane for Switzerland. But they got to Zürich, passed the Dignitas face-to-face exams, and then enjoyed a few days in the city that they had loved in previous visits, and went to some familiar places. Of course, it was different this time, but they both clearly felt these were among the best ways they could spend their last days and hours together. And then Brian ended his life under the supervision of Dignitas.
There are several incredibly sad parts of the book. But the author also conveys many happy and intimate moments as this couple thoughtfully negotiates Brian’s wish to end his life on his terms and in a way that is consistent with who he is. Ultimately, this book about a man’s decision to end his life with the support of his wife is not only sad, but uplifting.
Review by David Otto, PCV Board Member
by Green, Stefanie, M.D.
Scribner (March 29, 2022)
Dr. Stefanie Green, president of the Canadian Association of MAID Assessors and Providers (CAMAP) opens her book with the question, “What if you could decide, at the end of your life, exactly when and where your death would happen? What if, instead of dying alone, in the middle of the night, in a hospital bed, you could be at home at a time of your choosing?”
She begins her book with this question because she wants us to know how it can be possible to die as we wish. Canada has a Federal medical aid in dying law that makes it available to any qualifying Canadian resident or citizen. Most of the requirements are similar to those in the United States, including being over the age of eighteen, suffering from “a grievous and irremediable condition” and making the request voluntarily and under no sense of coercion. A major difference, however, is that the medication does not need to be self-administered. Patients have a choice of two methods: a self-administered drink with a health care practitioner standing by to make sure all goes smoothly, or, much more commonly, medication that is delivered by the clinician through an IV. It is the delivery by an IV that is the subject of Green’s book. It is chosen by the overwhelming majority of her patients and she makes a strong case for it.
The IV process involves four medications: an anti-anxiety medication called midazolam that makes the patient feel relaxed and sleepy; a local anesthetic called lidocaine that numbs the vein and is not always necessary, but is used to be 100% certain; a dose of propofol that creates a much deeper sleep, and rocuronium to ensure there is no muscular movement in the body.
The entire process takes eight to ten minutes.
Green , who began her career in general practice and maternity and newborn care, tells the reader what she does, how it works, what she’s seen, and what she’s learned. She introduces us to patients and takes us to their bedside while they die. She chronicles the conversations she hears. In one moving chapter she describes how a husband was ready to die and how his wife disrobed, lay naked beside his naked body, and held him closely as he fell asleep.
Green admits to being challenged by finding the right words to tell people what she “does.” In the beginning, she called medical aid in dying a medical procedure. She shifted to calling each event a “delivery,” comparing it to her maternity background. “At one end, I was helping deliver a baby, usually into life. At the other end, I was helping deliver a person out of intolerable suffering and through to their death. I liked the symmetry the term evoked, the poetry of it. Turned out, my patients like it too.”
There is a lot covered in this well written book, including summaries of where medical aid in dying stands in other parts of the world. She tells the history of getting MAID passed in Canada and of the need to write a clear law. In Canada, she says, “politics, unclear law and fear all played a role.” She writes that we must redefine the word “euthanasia” or else find a substitute. It comes from the Greek eu meaning good or well, and thanos meaning death. The modern understanding in Canada and parts of Europe is that it means the administration of a lethal medication by a health care professional at the request of a competent adult, with the goal of relieving suffering. Canada consciously chose to use the term MAID to avoid the negative connotation.
Green’s book offers a comprehensive view of how the practice of MAID in Canada helps to alleviate suffering, even for patients such as Parkinson’s and ALS patients who typically cannot administer the medication themselves, a requirement that is universal in the US. She has no answer for dementia. She has, however, written a sound book that will inform everyone who wants to understand better what medical aid in dying is.
Review by Susan Gillotti, PCV Board Member
by Frank Ostaseski
Flatiron Books, 2017
One of the rewarding aspects of medical aid in dying that is mentioned by surviving family members is the opportunity it offers for meaningful conversation before the person they love dies. The day of dying is chosen intentionally, and in the weeks and days leading up to it, truth is spoken. I think about this a lot, because my mother-in-law died from toxic poisoning of the liver in her fifties and her doctors never told us that she was dying. They said, no doubt meaning to be helpful, that “there was always hope.” She died, sooner than expected and without warning, and we had no chance for final conversations.
Frank Ostaseski, a pioneering teacher in the movement to improve end-of-life care, is a Buddhist teacher but not a proselytizer about his faith. In 1987, he founded the Zen Hospice Project in California, nationally recognized as a pioneering model in the movement to improve end-of-life care. He guided it for seventeen years and then, in 2004, moved to the Metta Institute, its name taken from an ancient Pali word meaning loving-kindness, friendliness, benevolence and non-violence. Here he trained clinicians and caregivers in the art of mindful and compassionate care. He sat with more than a thousand dying people, learning from them. His book shares that experience with us.
The Five Invitations is not about a theory or a cosmology, or about what the experience of dying is and means. Instead, Ostaseski shows us that death happens within a web of relationships and that we need to be present in those relationships with our heart. He offers five “invitations,” things we can do to bring meaning to each day, and thus to the entirety of our life, so that we do not face the reality of our life only two weeks before we die, and wish that we had lived it differently.
The first invitation is “don’t wait.” Don’t wait in order to begin living each moment in a manner that is deeply engaged. We must stop wasting our lives on meaningless activities. We must focus on the present and be grateful for what we have now.
The second invitation is to welcome everything and push away nothing. We must let go of our opposition to the experiences we are trying to avoid, “thoughts, feelings, and events included.” If we don’t let go of them, they will continue to consume us. “Pain,” Ostaseski writes, “is inevitable; suffering is optional.”
The third invitation is “to bring our whole self to the experience.” He writes, “We all like to look good. We long to be seen as capable, strong, intelligent, sensitive, spiritual, or at least well adjusted… Few of us want to be known for our helplessness, fear, anger, or ignorance… Yet more than once I have found an ‘undesirable’ aspect of myself, one about which I previously had felt ashamed and kept tucked away, to be the very quality that allowed me to meet another person’s suffering with compassion instead of fear or pity.”
The fourth invitation is to find a place to rest in the middle of things. This place of rest is always available to us. It is where we can begin to say “no” instead of feeling obliged to say “yes.” We ought to be able to find this place of rest before we die. Idleness is not an indulgence or a vice so much as it is indispensable. Ostaseski reminds us that “nearly all plants go dormant in winter. Certain mammals hibernate… All are guided by inner clocks to emerge again in the fullness of time, when conditions are right.” We need to do this because, he writes, quoting the late Angeles Arrien, “there are two things we can never do in the fast lane: we can neither deepen our experience nor integrate it.”
The fifth invitation is to cultivate “Don’t Know Mind.” We can get fixated on a certain destination, or we can walk on a path and not especially know where it is going. When we slow down enough to listen carefully, we can sense what is needed without relying solely on rational processes. “Not knowing” leaves room for wisdom to arise, for the situation itself to inform us.
The Five Invitations is filled with stories. My favorite may be the parable of the mustard seed. It tells the story of a woman whose young son suddenly died one day. “She was out of her mind with grief. She picked up her son’s dead body and walked through the village pleading with people to help her, to give her some medication that might help her son.” She approached the Buddha for help. He gave her a simple task. She had to bring him a mustard seed from a home that had not been touched by death. He did not seek to deny her experience, but rather to guide her toward the discovery of a powerful truth. Mustard seeds were commonplace in every home in her village, and there was not a single home that had not been touched by death. By walking from one home to another, and discovering this, she “learned that grief is our common ground… (and) a connective tissue that joins us together.”
Frank Ostaseski lectures internationally on end of life issues, has been featured on the Bill Moyers PBS series On Our Own Terms, and been honored by His Holiness the Dalai Lama.
Review by Susan Gillotti, PCV Board Member
Book Review: On Their Own Terms: how one woman’s choice to die helped me understand my father’s suicide
by Laurie Loisel
Levellers Press, 2019
What are our choices if we want to die but don’t live in a state where having a terminal illness will qualify us for medical aid in dying? For many people, there is a great fear of becoming helpless and dependent on others. They decide to die while the decision is still theirs. They commit suicide, often messy and almost always traumatic, or decide to stop eating and drinking and starve themselves. “On Their Own Terms” tells the stories of two very different people who took dying into their own hands and lets us see what it was like.
Paul Loisel lived in a small town near Augusta, Maine. He was a self-employed independent man. He lived fully, loved fully, drank more than most of his family and friends, and was kind and gentle. Many of his friends said “he was the most full-of-life person they knew.” But Paul knew that there were things he could no longer do, and he didn’t want to lose his independence. In 2012, when he was 82, still in good health, he drove to his local police station and shot himself in the parking lot. The note he left behind said that he was doing it for his children. He chose to kill himself in the parking lot of the police department because “the police would know what to do.” His children found the experience devastating.
Lee Hawkins, a friend of Paul Loisel’s daughter, was living independently in Massachusetts, but just. She had no medical condition that suggested death was near. She was, however, 90 years old and dependent on a walker. Her life was increasingly circumscribed. She had little appetite, was in constant pain, and had ceased participating in communal activities. She made her way slowly around her house, pushing the walker with a basket holding what she needed: “house phone and Rolodex, church directory, pens and pencils, combs, magnifying glass, remote control for her TV, a device to pick things up. She kept her cellphone in her pocket and an emergency call button around her neck. She had fallen so many times that she had grown fond of the EMTs who arrived when she pressed the emergency button to summon help. But she always argued the point when they wanted to take her to the emergency room.” In Lee’s words, she was “in a chrysalis stage between a caterpillar and a butterfly” and “balancing between the two worlds felt odd, in some ways uncomfortable.” And so she chose when she would die -- in August of 2014 – and how – by voluntarily stopping eating and drinking, in its medical acronym known as VSED. Laurie Loisel asked if she could be present, and if she could write about it, and this book is the result.
I’m posting a review because I can identify with the questions raised in the book. One of the things that haunts me is, who is going to care for me when I can no longer care for myself? Fortunately, I live in Vermont, one of nine jurisdictions that have enacted a law that allows medical aid in dying (MAID). I can live with some degree of discomfort and incapacity if I know that it won’t go on forever. Paul and Lee did not have this option (although Maine, where Paul lived, legalized medical aid in dying last year).
“On Their Own Terms” – beautifully written – is an excellent book to share with family and friends to get a conversation started. It’s an even better book to give your state legislator if you live in a state that has not yet legalized medical aid in dying (the jurisdictions that have are California, Colorado, District of Columbia, Hawaii, Montana, Maine, New Jersey, Oregon, Vermont and Washington). It’s time for a national conversation about this topic.
Review by Susan Gillotti, PCV Board Member
Book Review: When My Time Comes: Conversations about Whether Those Who Are Dying Should Have the Right to Determine When Life Should End
by Diane Rehm
Alfred A. Knopf, 2020
“Palliative and hospice care are amazing at making death easier for people. Yet there are limits. [They] do a really wonderful job; [but] we’ve forgotten that for some patients, the suffering goes on.”
Those are the words of Dr. Lonny Shavelson, Director, Bay Area End of Life Options, as spoken in an interview with Diane Rehm, author of the book, When My Time Comes. Rehm, longtime host of NPR’s The Diane Rehm Show (1979 to 2016, with a listening audience of nearly three million) has chosen for her new life work, the study of how we end our lives. She was moved to do this after sitting at the bedside of her husband for ten long days as he and she suffered while he refused food and drink. This was the only recourse to him when he was ready to die, because Washington, D.C., where he lived, had not yet passed a medical aid in dying law.
Eight states, plus Washington, D.C., have now legalized medical aid in dying, and many more states are debating it in their legislatures. There are strong advocates and strong opponents, and Rehm set out to listen deeply to both sides. She amassed a group of thoughtful people to discuss the issue, much as Plato in his Symposium asked a group of colleagues to discuss the nature of love. Rehm’s discussants range from cancer patients and their physicians to medical and constitutional law professors. She includes a palliative care physician, a hospice director, a state legislator involved in an unsuccessful attempt to get medical aid in dying passed in Maryland, and a Roman Catholic priest, as well as current medical school students, an African-American minister who explains the distrust many people of color in America have of our medical system, and family members who experienced the death of a relative who chose death with dignity.
Every interviewee offers something to ponder. Among the observations that stood out for me were these:
“It’s as though medicine has gotten ahead of human desire. There are so many ways to keep us alive, and yet the incredibly sophisticated means of keeping people alive don’t always take into account what people themselves want…Medical advances may be replacing humanity with technology.” – Barbara Coombs Lee, President, Compassion & Choices
“People should follow their own path, but they should still have a choice. That’s the bottom line.” – Mary Cheh, Professor of Constitutional Law
“No religion should have the standing to take away choices, reasonable choices, from people who don’t belong to that religion.” – Alexa Fraser, a Death with Dignity supporter
”…death is not the enemy – we’re all going to die. The enemy is terminal suffering, suffering at the very, very end of life… and who defines suffering? It’s the patient who defines suffering, it’s not the doctor. That’s really important to remember….Continuous deep sedation is legal in all states. The question really is, How could it be allowed and not medical aid in dying?” – Dr. David Grube, National Medical Director, Compassion & Choices
In the last interview in the book, Selwa Roosevelt, Chief of Protocol in the Reagan Administration, offers her hope that “by the time I’m ready to go, the laws will be changed all over the country and people won’t have to fly to Switzerland and other places to be able to have a death that one could live with.” She thinks it might happen soon: “Sooner or later, some of these legislators, the ones who are so adamantly opposed, are going to have to face it themselves, and they’re going to find out how important it is to be able to die with dignity.”
The majority of the interviewees in this book are in favor of medical aid in dying, and in fact Rehm wouldn’t have written the book if it had been otherwise. She ends the book with a note to her grandson: “What I would really like is for the whole family to be here on that last day of my life, so I can be with all of you, together. We will laugh, we will enjoy each other’s company, we will be with each other in happiness, and then I will go into my bedroom and into my own bed and I will pass away. And that will be a very happy moment for me if it can happen that way.”
Review by Susan Gillotti, PCV Board Member
by Lewis Mitchel Cohen, MD
London: Rowman & Littlefield, 2019
Lewis Cohen’s book, A Dignified Ending, is a comprehensive history of the movement towards medical aid in dying since the time of Socrates. It presents the pros and cons, the pioneers in promoting it, and the growing number of citizens who want it as their ultimate civil right.
Dr. Cohen is a professor of psychiatry, a palliative medicine practitioner, and a researcher who has been studying end-of-life issues for forty years. He decided to write this book because he wanted to understand the issue fully. Advances in medical treatment are often having the unintended consequence of allowing us to live longer at the expense of living well. What is the proper response to this?
There are many who believe that legislatures and religious institutions should be the arbiters of what is ethical. While Dr. Cohen is respectful of those who oppose medical aid in dying, he does not think they should prevail. No one has to choose this ending; he asks only that we be allowed to choose it if we want to.
A Dignified Ending weaves together scientific research, personal stories (including the ethical dilemma experienced by Sigmund Freud), and up-to-date information on the status of assisted dying today, both nationally and globally. It is at the same time a reference book that can be read by physicians, legislators, and religious leaders for a fully informed discussion of the use of medication that allows us to end our lives peacefully at the time of our choosing.
Cohen believes that legalized medical aid in dying may be coming to all of America soon. “America was founded on the concept of self-determination,” he writes. “We like to think for ourselves.” As our population lives longer, and children no longer live close to their parents, and the cost of long term residential care continues to be unaffordable for many, there will come a tipping point. We will ask whether prolonging life for the sake of prolonging life is still a worthy goal.
Cohen recognizes the difference between physical suffering and existential suffering. He concludes: “Medical aid in dying should be linked to irremediable suffering and not solely to the imminence of death. It should be available to those individuals who have had a consistent and unwavering desire for it. People should have the right to insist on controlling the end of their lives when life as they know it – when the identity that they have proudly forged – has already ceased to exist.” His book is a worthy contribution to the discussion and a keeper for the bookshelf.
Review by Susan Gillotti, PCV Board Member
by Katy Butler (Author),
Scribner (February 19, 2019)
Award-winning journalist Katy Butler, an authority on end-of-life issues, has written a book that all of us need. The Art of Dying Well is a practical, easy to read guide to making the best of our later years, even when we have a chronic medical condition. It is sensibly organized according to how far along the spectrum of frailty we are, with suggestions of the steps we need to take. The stages she defines are Resilience, Slowing Down, Adaptation, Awareness of Mortality, House of Cards, Preparing for a Good Death, and Active Dying.
Each chapter in the book has a defining checklist. When we are Resilient, we may find that “aches, pains and health problems are annoying but not limiting” and we may wonder why they make the numbers on credit cards “so small and fuzzy.” During the second stage, Slowing Down, we may be taking at least three medications regularly and find that blowing out the candles on our last birthday cake was a little harder. Awareness of Mortality enters when doctors won’t discuss our prognosis; they will use terms like “chronic, progressive, serious, advanced, late stage or end stage,” when what they mean is “incurable, worsening, worse yet, and approaching end of life.”
House of Cards is a wake-up call; the zest for life is melting away, we can’t walk half a mile unaided, and we’ve lost ten percent of our body weight in the past year. It’s followed by Preparing for a Good Death, which we should be doing when doctors say they wouldn’t be surprised if we died within a year, or cancer has returned after two or more rounds of treatment and we decide not to undergo more. Active Dying, the last stage, is what it sounds like; we stop eating, need to be helped to the bathroom, and may nap for hours, speak little, and keep our eyes closed.
You might think that all of these chapters are depressing to read, but that is not the case. Butler is positive throughout, helping us see that our experiences are normal and need not be something to fear. The end-of-life stages are part of a natural process of losing energy. We are born with energy and may have lots of energy well into our later years. But then it begins very imperceptibly to slip away, for each and every one of us. That is when this book becomes invaluable. It contains straightforward information on how to talk to our medical providers and how to be in charge. There is a 16-page glossary of medical terms that, for this reviewer, was especially helpful. I did not know about “frequent flyers” – crude hospital slang for a frail older person who repeatedly comes to the emergency room – or “cowboys” – doctors who will take inappropriate risks – or “moral distress” – the emotional and spiritual pain of medical staff, forced by hospital protocols or by patients’ families, to do things to patients that cause suffering and violate the clinician’s moral values.
Butler is non-judgmental about medical aid in dying (MAID). She reminds us that it isn’t new, that throughout history, “some medical professionals have quietly hastened death when they believed that their moral obligation to relieve suffering overrode a blanket duty to prolong life.” She cites Louis Pasteur, the father of the germ theory of disease, who a hundred years ago helped five farmers in France who’d been bitten by a rabid wolf die by lethal injection. She writes of the growing number of states in America where it is now legal, and of how “planned, voluntarily timed deaths… can be as calm, poignant, and sacred as any other.”
Butler’s The Art of Dying Well has been praised by Barbara Ehrenreich, author of Natural Causes, Ira Byock, author of Dying Well, and Lucy Kalanithi, widow of Paul Kalanithi, author of When Breath Becomes Air. It has been praised by a member of my family who, when I gave it to her, stayed up all night reading it. When I want to know what I should be doing next, I will check my behavioral symptoms against Butler’s lists. She will be an ally as I try to figure out how to have an honest conversation with a younger doctor, whether to call 911, and how to make my death a sacred rite of passage instead of a medical event.
Review by Susan Gillotti, PCV Board Member
by Barbara Coombs Lee (Author), Haider Warraich M.D. (Foreword) Littleton, CO: Compassion & Choices (December 14, 2018)
Barbara Coombs Lee has spent her life on the front lines as a nurse, lawyer and health policy reformer. She has seen death in every setting: on the streets of Harlem, during nightshifts in nursing homes, in intensive care and coronary care and while riding with EMTs. She also has a law degree, earned after twenty years as a nurse. As former CEO of Compassion & Choices, the national organization working to expand our options at the end of life, she has written a strong and powerful book telling us what we can do to make sure we die the way we want to.
Her message is clear: to die the way we hope to die, we have to take actions now. We cannot leave it to chance.
Physicians, Lee writes, often don’t want to tell us everything. They have been taught to maintain lives. Technological advances in medicine encourage them to do this. Unless we tell them what we do not want, we may die in the grip of heroic efforts to keep us alive. She quotes Gallup and Harris surveys that show that 69 to 74 percent of people now believe that the terminally ill should have agency over how their lives will end, and “just because we can prolong life” doesn’t mean we should.
To that end, Lee’s book provides an arsenal of helpful information. She defines advance directives and includes a chapter devoted exclusively to dementia. She discusses assisted living facility (ALF) riders that will assure our freedom of choice if that is our final home. She discusses sectarian healthcare directives and hospital visitation rights for unmarried couples. She devotes an entire chapter to “Overtreatment and Diminishing Returns” guiding the reader in identifying the important questions to ask a doctor. “What exactly is the success rate of this treatment?” and “How do you define success?” are two important ones. She invites us to think about what matters most to us in life. Do we love to read more than anything else? If the answer is yes, we need to know if a proposed treatment is going to give us blurred vision. Would we want it?
There are a growing number of states in America where medical aid in dying (MAID) is legal. Passing this legislation in all of America will take work. Lee offers examples of opposition to these laws and ways to tackle them. She takes on without flinching the hold some religions have on us by insisting on prolonging life at all costs. “Why,” she asks, “in a pluralistic nation, should some people be entitled to live their religious beliefs and others be required to live and die according to beliefs they do not share?” She makes an impassioned plea for us to become activists for our own agency at the end of life. Many doctors do not really understand what it is that the patient wants or think that they know best. It is up to us, she says, to develop our muscle when it comes to talking with our doctors, and making them feel comfortable with the questions we ask.
My copy of Finish Strong is on the bookshelf next to Atul Gawande’s Being Mortal. Buy it not only for yourself, but for your children and grandchildren (and your parents and grandparents). The desire to die gently, without distress for our loved ones, should be something we can talk about easily with friends, family, and physicians.
Review by Susan Gillotti, PCV Board Member