Dying with Grace
Preparing for the End of Life
By Jennifer Margulis
On a sunny day last March over a hundred mostly gray-haired people file into an auditorium at Asante’s Smullin Health Education Center in Medford. A large screen behind the stage projects the afternoon’s agenda: HAVING THE CONVERSATION. On stage are two empty armchairs, violet with pale blue dots, a white rug, and a hospital gurney. On the gurney lies a manikin, its hairless head resting incongruously against a flowered pillow. For some reason I find this detail heartbreaking.
We are gathering in this dimly lit high-ceilinged lecture hall to talk about death, a subject most Americans under sixty would rather avoid and most Americans over sixty aren’t sure how to broach with their loved ones. I hunker down in my seat, trying to make myself smaller. I am attending this event as a journalist but I am already flooded with grief. In November 2011 my mother had a massive brain hemorrhage. At 73, she was healthy and fit, sitting at the computer in her third floor home office writing a letter of recommendation for a former graduate student. A friend saw her biking earlier that day. Perhaps to the post office, where she had mailed a package to me: a hand-embroidered shirt from Mexico, where she had just been lecturing about microbiology. That afternoon, seemingly out of nowhere, a vessel in her brain exploded. She cried out and fell heavily to the floor. By the time the EMTs arrived, my mother could not speak, the right side of her body becoming paralyzed from the bleeding going on inside her brain.
John Forsyth, M.D., is a retired cardiologist who wants to help families plan for and cope with these kinds of catastrophic events. Dr. Forsyth, who introduces the program, is the co-founder and chair of COHO, a non-profit project in southern Oregon that helps facilitate conversations about dying. COHO stands for “Choosing Options, Honoring Options.” This organization believes that communication about the end of life is one of the keys to having a dignified death based on personal preferences.
“We are more than our flesh and bones,” explains Susan Hearn, Executive Director of Southern Oregon Friends of Hospice who also works with COHO. She tells me that most people at the end of life die four ways: from sudden death, from cancer, from chronic disease, and/or from frailty and dementia. Much has advanced in modern medicine, she notes, but as the satiric paper “The Onion” has pointed out, the world death rate among humans remains constant at 100 percent. Susan invites me to attend some of COHO’s community events, which are usually free (a donation is suggested), to better understand the organization’s mission. “The more you talk, the more opportunity you have for meaning and growth, and figuring out what’s important about your life,” Susan says.
With and Without the Conversation
In order to illustrate just how imperative it is to talk about death before a loved one dies, COHO presents two skits. In the first, an older woman (played by Shirley Patton) walks onto the stage. “I thought there’d be time for everything,” she says wistfully. Then her tone grows playful. “That’s me in the bed. I look pretty good, don’t I? I never looked my age.” Her daughter comes onstage next, wringing her hands and badmouthing her brother. The distraught son—late because he stopped at the bar on his way—can’t bear to let go. He wants to continue as many life-sustaining interventions as possible and he belligerently tells his sister their mom is too young to die. At the same time we hear the dying mother’s thoughts in a voice-over. Though she cannot speak to her children she hears everything they say, shrieking with frustration as they bicker and ignore her. The antagonism between brother and sister makes my skin prickle. No mother wants to die thinking her children will never see or talk to each other again, the dying woman wails to the audience.
The second skit is the same scene with the same characters that begins the same way. But there is a crucial difference: Though Shirley still lies dying on the hospital gurney and though there is still some tension between her children, the three have already had a conversation (“the conversation”) about their mom’s end of life. “We need to give our mom a death she can be proud of,” the daughter (played by Eve Smyth) muses to herself, “that’s the only thing we can do for her.” “I know what you want,” she continues, talking directly to the manikin, “but it still won’t be easy.” This time Shirley, the dying woman, is the most important person in the room. Her son (played by Peter Quince) and daughter cope with their grief differently, and the son is still full of bluster and misery, but they have already talked to their mother about her wishes and know what they need to do to honor them. Instead of anger, feelings of love, sorrow, and forgiveness permeate the imaginary hospital room.
It’s not just hard for families to have these kinds of end-of-life conversations, it is hard for doctors too. “In medical school and in five years of post training, we never received any education about end-of-life conversations,” explains Dr. Forsyth. “We were meant to feel guilt if we could not produce a cure.” He tells the audience he believes medical school training is changing and that medical students today are more encouraged to have discussions about end-of-life issues with their patients and their patients’ families. Others aren’t quite so optimistic. “Recently a hospital in the U.S. launched a ‘Cheat death!’ tag line,” Peg Sandeen, Executive Director of Death with Dignity National Center, writes me in an email. “Physicians regularly and aggressively treat disease, but rarely discuss the dying process.” Others point out that today’s medical students are still taught to be more dispassionate than compassionate. “In general American medical schools have not done a good job of training physicians to have these conversations,” admits Davis Wilkins, M.D., medical director of Ashland Community Hospital’s Home Health, Hospice, and Palliative Care. Some doctors fear that emotion or personal relationships will cloud their judgment. They are also cautioned to keep clear doctor-patient boundaries and they may feel uncomfortable sitting at a dying patient’s bedside holding her hand. But Dr. Wilkins, who graduated from medical school in 2002, also believes medical training is improving. “Now there is a much bigger awareness that we are not good at having end-of-life conversations, and that doctors are uncomfortable,” Dr. Wilkins says. “Some medical schools have started to increase their information and training.”
Neither of 60-year-old Peter Quince’s parents had the deaths he would have hoped for them, the actor and playwright from Ashland who wrote the two skits, tells the audience during a discussion afterwards. His father, who was battling cancer, made no plans for dying and eschewed any conversations about death. When he died suddenly of a heart attack at age 71 his family was totally unprepared. Peter’s mother was on life support in New York, intubated, drugged, and uncomfortable, for two months at the end of her life. Witnessing a death like his mother’s is not an experience Quince would wish on any child.
Welcome to Oregon— A Great Place to Die
When you think of dying, you probably do not imagine yourself hooked up to heart monitors and breathing machines. Many of us have unanswered questions (Where do we go? What happens next? Will we be remembered?). But for the most part, no one wants to linger in a vegetative state at the end of life. Yet while most Americans will put a beloved pet to sleep at the end of its life, physician-assisted death remains a hotly debated topic among lawmakers and the general public. In 1997 Oregon legislators passed the Death with Dignity Act that allows terminally ill mentally competent adults who have fewer than six months to live to obtain medication from their doctors to hasten the time of their own death. This medication must be taken orally by the patient. Following Oregon’s example, similar laws were passed in Washington and Vermont. According to Death with Dignity National Center, a non-profit that educates people about the laws, one third of the people in Oregon who fill the prescription don’t actually take the medication—for them having the option to terminate their own life is a safety net, a way to keep some peace of mind.
“Oregon isn’t just a good place to die, it’s a great place to die,” explains Peg Sandeen. “We have some of the highest rates of hospice usage in the country. Similarly, we have one of the highest rates of people being able to die at home—where they want to die—rather than in a hospital setting. Our pain control policies are some of the best in the nation. The additional option of Death with Dignity provides dying Oregonians with more choices than most people in the U.S. have.” Dr. Wilkins, who says nearly every medical professional in Southern Oregon supports COHO’s mission, agrees: “People worried [the Death with Dignity Act] was going to get rid of good conversations about end of life,” she tells me. “But now we have a much more open dialogue about end-of-life issues in Oregon, in part because of that law. That’s a nice side effect—to have a society much more comfortable talking about these things.”
Preparing for Death
When I was 25 years old my mother came to visit me in my ground floor Victorian apartment in Jamaica Plain, outside Boston. I had a dance party that night. She sat on my stained couch chatting with my friends, and commented rather wistfully on how much energy I had. The next morning my mom, 56 years old, drove home to Western Massachusetts. I did not notice anything was wrong until I obsessively replayed the day’s events in my mind, but I called her that afternoon to make sure she had arrived safely, something I would not normally do. “I’m on the floor,” my mother mumbled, “in a pool of sweat.” “You need to go to the doctor,” I urged. “Right now.” She laughed exhaustedly. “Oh no, I’m not going to the doctor until I figure out what’s wrong...”
My mother was the kind of person who was always on the move, even sitting down. Never once during my entire childhood had I seen her sleeping. I got a speeding ticket racing to her bedside. By then she lay still in a hospital bed in the ICU, surrounded by strangers, hooked up to machines. Several blood transfusions saved her life. She had been hemorrhaging internally and lost half the blood in her body. The doctors never figured out the cause.
During the time I took off work to organize her affairs, my mother and I started having a conversation we would revisit over the years. She appointed me her health care proxy (called a “Healthcare Representative” in Oregon) to make health decisions for her if she were not able, and her power of attorney, so that I could legally pay her bills and transact other business for her. She told me, time and again, that she did not want to be on life support, ever, for any reason. She explained she was not afraid of death but she was terrified of the “indignities of dying.” She wrote a living will with instructions that she did not want to be resuscitated. She was adamant that she wanted to function at 100 percent for as long as she could. If she could not, she did not want her life artificially prolonged. “If I’m ever paralyzed, promise you’ll shoot me,” my mother said. “Don’t let them do that to me,” she said during one of the last conversations we ever had, after describing visiting a brilliant colleague who was paralyzed and in a nursing home, unable to lift a spoon, recognize his daughter’s face, or hug a friend.
This time, seventeen years after my mother’s initial death scare, the hand that was not paralyzed was tied to the bed to keep her from yanking out the breathing tube. “It feels like a garden hose shoved down your throat,” a nurse, who had been on a respirator after a car crash, sympathized. When I saw my mother hooked up to the machines and monitors, literally tied to the bed, I felt I had failed her. “I’m here now, Mom,” I cried, taking her limp hand in mine and putting my other hand over her heart. “It’s okay.” The next day our family met with the doctors. The brain bleed would have killed a younger person instantly, they told us. She might survive months of rehabilitation but it was unlikely she would ever walk or speak again. Massachusetts has no Death with Dignity law. Even if they did, the catastrophic brain hemorrhage that left my mother unable to speak or move also made it impossible for her to end her own life. But hospital personnel honored my request to remove her from life support and bring her home.
We will be okay without you, I lied to my mother during her last days of life. Her doctor, who had become a friend over twenty years of looking after her health, came to sit by her side. Hospice volunteers gave her sponge baths, the nurses prescribing anti-anxiety and pain medication. We played her favorite composer, Schubert, softly in her room. My brother’s girlfriend taught my daughters to massage her legs with lavender oil. I crawled into bed with her at night—something I was never allowed to do as a child—because I could not bear for her to be alone. I love you, I told her. I’ll never be ready but I can let you go.
“The last days of life are important,” says Glennie Feinsmith, a psychotherapist in Southern Oregon. Glennie’s mother was 73 when she died from lung cancer that had already metastasized by the time the doctors found it. Feinsmith stayed by her mother’s side while she was dying, doing her best to honor her wishes. “You have to have the courage and strength to say what you need to say. The effect of talking is profound,” Glennie tells me. “It opens a doorway to a new level of love. A lifetime of abuse can be healed in those moments.”
“Most of us would want what we call a peaceful death,” agrees Maryhelen Zabas, program manager of the Sacred Art of Living and Dying, a spiritual center in Bend. “Our culture is a culture that denies death. As a consequence we are not ready to face everything that comes with the dying process. Accepting the fact that one day we will die allows us to do the spiritual work we need to do to prepare for that moment.”
Death By The Numbers
World Death Rate: 100%
Cost for most expensive 5% of US patients
with chronic disease and organ failure: $600 billion/year
Americans Who Want to Die at Home: 80–90%
Americans Who Do Die at Home Nationwide: 30%
Americans Who Die at Home in Oregon: 50%
U.S. Healthcare budget spent on end-of-life care: 10–12%
COHO Choosing Options Honoring Options (http://www.cohoroguevalley.com;
email@example.com; 541-292-6466; 670 Superior Court, Ste. 208, Medford,
Oregon) facilitates both public and small private group conversations about the end of life, maintains a DVD lending library and advance care planning resources, and helps people discuss and document their wishes while educating about palliative and hospice care for when a loved one is dying.
Death with Dignity National Center (http://www.deathwithdignity.org/aboutus; 503-228-4415; 520 SW 6th Avenue, Suite 1220, Portland; firstname.lastname@example.org), a non-profit dedicated to promoting and
defending Death with Dignity laws as a way to improve national conversations about end-of-life care.
The Sacred Art of Living and Dying (https://www.sacredartofliving.org/; email@example.com; 541-383-4179) is a center for spiritual studies in Bend, Oregon that helps people with end-of-life spiritual care and bereavement.
Southern Oregon Friends of Hospice (http://www.sofriendsofhospice.org/; 541-488-7805) financially supports and helps educate people about Southern Oregon end-of-life programs.
Compassion and Choices (www,compassionandchoices.org/what-we-do/on-the-ground/.) Compassion and Choices. CC is a nonprofit organization, established in 1997, which supports the rights of terminally ill individuals to a caring gentle death according to their own values and beliefs.
Jennifer Margulis, Ph.D. is an Ashland-based writer and a senior fellow at the Schuster Institute for Investigative Journalism. She explores beginning-of-life issues in her new book, The Business of Baby: What Doctors Don’t Tell You, What Corporations Try to Sell You, and How to Put Your Pregnancy, Childbirth, and Baby Before Their Bottom Line (Scribner 2013).
As a hospice nurse and photographer, Mary Landberg has had the honor to witness and capture the unwavering expression of love that endures between people living with terminal illness. Her book The Spirit of Enduring Love, due to be published early next year, is a moving collection of 115 portraits of hospice patients with family and friends embracing love and life. This book also offers glimpses into hospice care and the truth of what the process of death and dying looks like. Included are stories from grand conversations with the dying, their advice for living and the wisdom their illnesses have gifted them. Details at www.hospiceportraits.com