by Katy Butler
Our current system is structured for the convenience of the richest and most powerful one percent of the players in medicine—hospitals, insurance companies, specialists, academic medical centers, and commercial companies that sell drugs and medical devices for profit. It does a better job of benefiting them than it does at serving the patients who supposedly lie at the heart of medicine’s mission. It is time we, the silent majority who serve, or will serve, in the nation’s informal Caregiver Army, found our voices on every level, starting with the individual doctor’s office.
THE ART OF THE IMPERFECT
I hope this book will help you to navigate this bewildering situation wisely. I hope it will give you the tools to reverse incipient health problems while you still can; to get well-coordinated medical care when you can’t reverse them; and to recruit someone to protect you from aggressive treatment when you become fragile. I hope it encourages you to never be intimidated by a doctor, to remain the expert on your own life, and to keep your voice. Above all, I hope this book will help you shape your life, and your death, in ways that reflect what matters most to you. I hope that no matter where you die, someone brave will help you make room for the sacred.
But please remember that we create a new Art of Dying not to make things perfect. We work with the inadequate materials at hand to fashion something bearable, shared, and in its own way beautiful because it is sanctified by love.
People like the physician-writer Atul Gawande are making amazing strides in improving the culture of medicine from the top down, coaching doctors to hold more honest conversations with people confronting the unfixable. But training doctors to tell patients what they need to know is only one piece of the puzzle. It’s up to the rest of us, working from the bottom up, to create the political pressure to transform private and public insurance so that they financially reward such changes, and give us the practical and medical support we need near the end of life.
So find your voice. Your best conversations about aging, dying, and medicine will probably not take place in a doctor’s office. They’ll take place around your kitchen table, with you speaking your own kitchen table language to the people you love, and who love you. And then I urge you to take your voice out into the wider world, and keep telling your stories.
Acknowledgments
This book started out as a slim volume of aphorisms and self-help tips. I quickly learned that if it were to find its true shape, I would need to include the stories, experience, and wisdom of people who knew more than I did. The following people, and others whom I have not named, taught me that dying well is rarely done alone. It takes a village, and so has writing this book. My gratitude is boundless.
Many people shared personal stories about aging, illness, and good and difficult deaths. I was moved, enlightened, and changed by Jackie Adams, Kelcy Allwein, Jennifer Moore Ballentine, Amy Berman, the late Merijane Block, Diana C., the late Mary Jane Denzer, Bronni Galin, Judy MacDonald Johnston, Laura Lamar, Robert Levering, Anne Masterson, RN, Sharry Mullin, Cathryn Ramin, Karen Randall, Ed R., Liz Salmi, Jane Sidwell, Amy Sousa, Doug von Koss, Leslie Walker, and the late Mary Wolfe. Thank you for helping me understand more, and fear less. I also thank people whom I cannot name. You know who you are.
Members of the Facebook group Slow Medicine responded to random questions when only a family caregiver, medical advocate, physical therapist, speech therapist, occupational therapist, hospice nurse, or palliative care doctor could help me. Thank you to all of you, and especially those who vetted individual chapters, including Katie Armatruda; Alisha Benner, MD; Lisa Berry Blackstock; Toby Brandtman, MD; Patti Bartholomew Heaps, RN; Christine Khandelwal, OD; Amy Lustig, SLT; Mary Anne Miller, RN; Mary-Jean Paulitz, PT; Lori Perrine, RN; Ellen Schweigert; and Jerry Soucy, RN. Any errors that remain are my own.
Gratitude is due to all hospice workers, activists, doctors, insurers, nurses, and researchers passionate about improving the American experience of the end of life. Those who deepened my understanding include Megory Anderson, D.Th., Robert Arnold, MD, Anthony Back, MD, Amy Berman and our colleagues at Carelab, Atul Gawande, MD, Valery Hazanov, PhD, Shoshana Helman, MD, Daniel Hoefer, MD, Redwing Keyssar, RN, Joanne Lynn, MD, Diana Meier, MD, the late Dennis McCullough, MD, BJ Miller, MD, Susan Mitchell, MD, Siddhartha Mukherjee, MD, Sunita Puri, MD, Debra Rodgers, RN, Phyllis Shacter, Victoria Sweet, MD, Joan Teno, MD, Jessica Nutik Zitter, MD, Dawn Gross, MD, Thomas J. Smith, MD, Judy Thomas, JD at the Coalition for Compassionate Care of California, Eric Widera, MD, and Bart Windrum. Thank you.
The poet Jane Hirshfield, in a spontaneous act of friendship, read and commented on the entire manuscript at a late stage. My thanks to Jane, and to my delightful and skilled writing partners Anne Cushman and Katherine Ellison, who read drafts of many chapters. My gratitude extends beyond them to Jonathan Butler, Zoe Carter, Jonathan Dann, Susan Ito, Eva Shoshany, and to members of my former writing group: Molly Giles, Laura Hilgers, Jonathan Krim, and Stefanie Marlis.
In a rapidly changing literary landscape, I am honored to call Amanda Urban my literary agent, and Scribner my publisher. Thank you to Kara Watson for her delicate editing, and to Abigail Novak, Dani Spencer, Nan Graham, Susan Moldow, Brian Belfiglio, and Roz Lippel, for helping this book find its readers and its home. Thank you for believing in me.
For research and other forms of invaluable professional help, I thank Constance Hale, Leslie Jackson, Joy Johannessen, Leslie Keenan, Mary Ladd, Elizabeth Savage, Rebecca Sheranian, and Rebecca Snyder. Special thanks are due to Leah Rosenbaum and to Joanna Czerny, my lecture agent, for keeping me out of the weeds and helping me to spread the word.
I was blessed with the gift of uninterrupted writing time, in beautiful surroundings, at Mesa Refuge in Point Reyes, California, and at the Corporation of Yaddo in Saratoga Springs, New York. Thank you to the philanthropists and visionaries who support artists and writers. You make much beauty possible.
Finally, I am grateful daily for my husband, Brian Donohue, who listened to every chapter read aloud and keeps teaching me how to find the joy in any situation.
More from the Author
Knocking on Heaven's…
About the Author
© CAMILLE ROGINE
KATY BUTLER is the author of the critically acclaimed Knocking on Heaven’s Door, a New York Times Notable Book, shortlisted for the Dayton Literary Peace Prize, and winner of a Books for a Better Life Award. Her articles have appeared in the New York Times Magazine, the Wall Street Journal, The Best American Science Writing, Scientific American, and The Best American Essays. A finalist for a National Magazine Award, she lives in Northern California.
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Glossary
Many professions speak a secret language, intimidating to outsiders. Medicine is no exception. It is riddled with professional jargon, acronyms, euphemisms, overly officious terms for simple concepts, slang, and secret argot. Since the subculture of medicine can be mysterious, I hope this glossary of its terms of art will be a guide, much like a phrase book for a foreign country. The aim is to empower you to understand what your doctors are trying to tell you, and encourage you to speak up about what matters most to you.
ADLs (Activities of Daily Living): A checklist of the five basic tasks required to car
ry on an independent daily life: feeding ourselves, bathing, dressing, grooming, and going to the toilet. They are important because assessing ADLs is a quick way to set therapeutic goals for improved functioning, and to qualify for various Medicare and Medicaid benefits. IADLs (instrumental activities of daily living) are the more sophisticated life tasks necessary to function well in complex modern society, such as paying bills, cleaning house, shopping, cooking, driving, taking medications on time, and using the phone. People having trouble with IADLs can often cope at home with sporadic assistance, while those having trouble with ADLs usually need help daily or even hourly.
Advance directive, or AD: Also called a living will, this legal document records the treatments you want and don’t want when you are unable to communicate, close to dying, or unlikely to be restored to a life that you consider enjoyable and meaningful. If you fear being hooked up to a ventilator when you are dying, or being kept “alive” after a catastrophic brain injury, sign an advance directive.
Advanced illness: Doctor’s lingo for the later stages of serious, slow-moving, incurable, and ultimately fatal conditions, such as cancer, emphysema, and heart failure. This phrase has no set medical definition and no timetable, but it generally means that you can no longer function without help, and no turnaround is in sight. Ask your doctor precisely what she means if she uses this phrase; in some cases, she may mean you are “hospice ready.”
Anticholinergics: Insidious, widely used medications, ranging from Benadryl to many prescription sleeping pills, that block the action of the chemical acetylcholine in the brain and nervous system. Short-term use is linked to cognitive confusion; longer-term use is linked to a significantly higher risk of dementia. For more information, consult the “Beers List,” frequently updated by the American Geriatrics Society.
Assisted suicide or physician-assisted suicide: Terms used by opponents of the practice of prescribing life-ending medications to terminally ill people who request them. Because the word “suicide” has criminal and pathological connotations, proponents prefer the terms “aid-in-dying,” “right to die,” “death with dignity,” “physician-assisted death,” and “end-of-life options.”
Attending: An attending physician is the top dog among the doctors you are likely to see in a hospital. He or she trains and supervises less-experienced interns and residents. The rule of thumb is the longer the coat, the higher the doctor’s status and power. Interns are the newbies in the short white jackets; residents are halfway through their training; and attendings generally wear the longest coats. If you want a change in your hospital care (such as no taking vital signs at night) ask the attending to write a physician’s order.
Bioethics committee: A group appointed by a hospital to resolve conflicts among doctors, families, and patients about treatment (and nontreatment) by applying the basic principles of medical ethics. The four guiding principles are: patient autonomy, fairness, non-harming, and benefiting the patient. (Usually summarized as autonomy, justice, non-maleficence, and beneficence.) If you feel you are getting medical treatment you don’t want, or not getting care you do want, you can ask for a “bioethics consult.” A palliative care consultation, however, is usually a better first step, because palliative care doctors are often more interpersonally skilled, and negotiate practical solutions.
Capacity: Medical-legal term for having the marbles to make your own decisions. If your doctors decide you don’t have “capacity,” decision-making will fall to your designated medical advocate—also known as your surrogate, health care agent or proxy—and if you have none, to the doctors themselves.
Care: This term means very different things to medical staff and to lay people and creates much confusion. In the medical world, “care” means any form of treatment, including intrusive and uncomfortable life support technologies. It doesn’t necessarily mean hands-on nursing, emotional support, and other forms of what lay people call “caring.” When a doctor speaks of “withdrawing care,” he or she usually means releasing a dying person from advanced medical technologies, not the end of concern, comfort, and compassion for the patient.
Charge nurse: The nurse “in charge” of the shift on your hospital ward. The decision maker. If you want a change in your nursing care, don’t just complain, ask for the charge nurse.
Chemo brain: Mental fog, often permanent, following chemotherapy. One of many causes of dementia.
Chronic: Incurable but often manageable. People with well-managed chronic illnesses sometimes survive for decades.
Chronic obstructive pulmonary disease (COPD): A serious lung disease, such as emphysema, in which lungs become less efficient at delivering oxygen to your bloodstream. COPD is incurable; you will qualify for hospice when it is advanced or end stage.
Circling the drain: Doctor-to-doctor slang for “approaching the end of life,” used for frail patients suffering repeated health crises. Any crisis may be the last. More scientific-sounding terms include advanced frailty, multiple co-morbidities, and failure to thrive.
Clinical effectiveness: A measure of direct benefit to a patient’s well-being. It is important to ask about “clinical effectiveness,” because many treatments that show “surrogate effectiveness” or “statistical significance” improve scores on diagnostic tests but don’t translate into real benefits for real patients.
Coding: Hospital slang for imminently dying, also called crashing. The term comes from announcing a Code Blue over a hospital public address system, to request a resuscitation team. A slow code, light blue code, or Hollywood code means going through the motions of a Code Blue to satisfy relatives or hospital protocols, but doing so slowly and gently because there is no hope of saving the patient. Other codes are not standardized from hospital to hospital, but Code Red usually indicates a fire.
Comfort care: Phrase used in hospitals and nursing homes for stopping any treatment that causes pain, and focusing instead on relieving all forms of suffering. It has no precise medical definition but the term is widely recognized. If you think it’s time to stop curative measures and allow a natural death, ask for a physician’s order for “comfort care” or “comfort measures only.”
Complementary and alternative medicine: All non-Western and non-traditional approaches to sickness and health are lumped together under this heading, including acupuncture, nutrition, reiki, guided imagery, massage, ayurveda, herbs, and harmonizing mind and body through prayer or meditation. An umbrella term for healing modalities developed outside the western scientific paradigm.
Congestive heart failure (CHF): The heart no longer pumps efficiently, due to leaky valves, stiff and clogged vessels, or other damage. A chronic, incurable, worsening condition. Symptoms include breathlessness, fatigue, weakness, and swollen ankles. Sometimes a pacemaker, a heart valve replacement, or another surgery can help if the patient is still resilient. Often symptoms are best managed with medications and lifestyle changes such as exercising, reducing salt, managing stress, and losing weight. In its early stages, a heart management nurse can help you maintain the best possible quality of life. CHF usually worsens until it becomes advanced or end stage, making it a hospice-qualifying diagnosis. Hospice nurses can help you manage shortness of breath, heart pain, and other symptoms, using morphine and other drugs.
Cowboy: A medical risk taker. This disparaging in-house term is used to describe doctors who take inappropriate risks, such as performing open-heart surgery on someone too weak to recover. If you get news you don’t like from one doctor, you can probably find a “cowboy” willing to blue-sky you.
CPR: An attempt at reviving a person after stoppage of the heart or breathing, using stimulating drugs, forceful pushes on the chest, and shocking of the heart with an external defibrillator. When performed on the frail elderly or the terminally ill, CPR can break ribs and be brutal and ineffective. Short-term survival rates range from 8 to 20 percent, and survival without brain damage is rare. To avoid CPR, get a physician to sign a POLST and/or a do-not-resuscitate (DNR)
or allow natural death (AND) order.
Crash cart: Rolling hospital cart containing drugs and devices for cardiopulmonary resuscitation (CPR), including a hand-operated airbag mask to support breathing, and an external defibrillator to attempt to shock the heart back into a normal rhythm.
Cyanosis: Being blue. Blue lips, skin, and fingernail beds are common signs of the approach of death.
Defibrillator: An external defibrillator shocks the heart through the chest wall in an attempt to normalize its rhythm. An implanted defibrillator, or ICD, sometimes called “an emergency room in your chest,” does the same thing internally. When it fires, people say it feels like “being kicked in the chest by a horse.” If you agree to a defibrillator, it is important to create an “exit plan” for a deactivation order when it no longer serves your purposes, as it can cause unnecessary suffering and repeated painful shocks on the deathbed. According to joint ethical statements issued by all the major cardiology associations, deactivation is neither assisted suicide nor euthanasia.
Dementia: Practical medical shorthand for a decrease in mental function severe enough to require help managing daily life. Because it has multiple causes, dementia is a label, not a precise diagnosis.