https://www.sfgate.com/magazine/article/Hastening-the-End-3281002.php
Hastening the End
In the face of painful, debilitating illness, some people turn to end-of-life consultants as they plan for death
Katherine Seligman
Published 4:00 am PDT, Sunday, June 8, 2008
Molly Fischer envelopes the hand Carole van Aelstyn of Compassion and Choices at Fischer's home in Cloverdale, Calif. on May 20, 2008. Fischer, who may hasten her death, meets van Aelstyn regularly to make plans for it. Photo by Mark Costantini / San Francisco Chronicle. less
Molly Fischer envelopes the hand Carole van Aelstyn of Compassion and Choices at Fischer's home in Cloverdale, Calif. on May 20, 2008. Fischer, who may hasten her death, meets van Aelstyn regularly to make ... more
Photo: Mark Costantini, SFC
On the last day of her life, Julie curled up on her couch, surrounded by her three children. They had a light lunch and sipped wine. Julie kept changing positions, trying to find one that didn't hurt. It was a winter afternoon, one she had planned meticulously, without knowing when it might arrive.
"It is such a relief to know that maybe you can get a dignified and joyful landing," she said, speaking into a tape recorder - in a recently added part of the plan.
We were to have met at her Bay Area home in a few days, but she was too exhausted, dehydrated and beaten down by lung cancer to last that long. So, hours away from taking a lethal dose of medication, she tape-recorded her thoughts about her decision to seek help from a little-known end-of-life consultation service offered by Compassion & Choices, an advocacy and education organization with headquarters in Colorado and in Oregon, the only state to legalize physician-assisted dying. Her children decided to talk about their experience to honor what their mother most wanted, that the subject be discussed. But they asked that that their names be withheld to protect their privacy.
Their close friends knew about Julie's choice of assisted or "hastened" death, as advocates call it, but it was hard to gauge anyone else's reaction. While still grieving, Julie's family had to deal with the feeling that the subject was off-limits, or as one son-in-law said, something that was "underground, that's not OK and that someone will do something to you."
In states like California, which prohibit doctor involvement to end life, Compassion & Choices provides a range of information, but no doctor assistance. It gives referrals and advice, including help finding hospice care, counseling for patients and family members, planning advance medical care directives and discussing pain control and end-of-life options. Patients get the support of a trained volunteer - including in one case a retired Harvard-educated doctor who gave up his medical license to work with terminally ill patients. Volunteers follow people, if requested, along the last months of life, including being present at the deathbed. "It's like having a midwife, someone who had been through this and was aware of the emotional and technical aspects," said Julie's son-in-law. Compassion & Choices has been offering the consultation service for about a decade, but just started trying to make it more publicly known, bringing it, as one official at the organization said, "out of the shadows."
"It's our position that this kind of consultation isn't illegal at all," said Barbara Coombs Lee, president of Compassion & Choices, which last year worked with 2,500 people around the country. "Keeping it secret and shameful is part of keeping people powerless. It's extremely empowering to have the knowledge."
Julie, a petite, robust woman who hiked and traveled almost to the end, was never in the shadows about her plans. She'd always told her three children, now grown, that she would choose to die if she had no quality of life. "My mother made it clear to her family from the earliest age I could understand that she did not want to go on living if her quality of life was severely impacted, her sense of dignity was jeopardized, or she had to suffer uncontrollable pain from a terminal illness," her oldest daughter said in an e-mail after Julie's death.
Over the years Julie developed painful rheumatoid arthritis and suffered from degenerative spinal disease, but none of that was life-threatening. Then about two years ago she was diagnosed with advanced lung cancer. What had been philosophical suddenly became personal. She was 74, enjoying her relationships with her children and friends. She wanted to live. After consulting multiple doctors and doing research, she chose to have radiation but forgo chemotherapy.
By early winter, the cancer's metastasis made simple movement agonizing. Julie had begun losing weight rapidly, about 20 pounds in the last six weeks. She had no appetite and couldn't sleep or find relief from the excruciating pain in her back and neck. She tried medications, shots in her neck, a brace, electrical impulse therapy, but those provided little help. Increasing her narcotic medication made her fuzzy-headed and nauseated.
She was on the threshold of having the kind of life she'd always said she couldn't tolerate. What was the point if she was in pain every waking minute or so medicated that she couldn't interact? What is the quality of that life?
These are questions we and our families may all face. Mine did six years ago when my father, 90 and precipitously ill, ended his life by swallowing a bottle of 20-year-old sleeping pills. He was a retired doctor who knew how to do it, but we were alone and unsure and, at the time, felt we had to keep it quiet.
There is no end of emotional debate by politicians, the medical world, religious leaders and the terminally ill on whether death should ever be a planned event. As the Baby Boomers age, it is talked about more, although so far, not more easily. The Boomers are a generation whose members are expected to live longer, healthier lives but who inhabit a culture besotted with age-defying strategies. While there is understandable enthusiasm about progress in anti-aging, there is a corresponding lack of desire to discuss planning for the inevitable alternative.
"People don't want to talk about it," said Carole Van Aelstyn, the volunteer coordinator in California for Compassion & Choices, who consulted with Julie through the last two years of her life. A 68-year-old grandmother who has four grown children, Van Aelstyn has come to think of herself as "a midwife to the other side." "It's not sexy. Who will talk about dying?"
She now supervises close to 25 volunteers in California who do just that. Callers to the Oregon organization are evaluated by similar standards set by that state's Death With Dignity Act. To be accepted as clients they must have a doctor's diagnosis of terminal illness, be mentally competent and at least 21 years old. Clients are carefully evaluated to screen out those who are depressed and may be interested in suicide - a particularly high risk for seniors. The elderly, particularly white men 85 and older, have the nation's highest rate of suicide.
"We ask a person to tell us why they've called," said Helen Beum, the group's clinical director. "While we're listening, we're listening for clues to their thoughtfulness, their mental abilities, looking to see if they are telling us the truth. Sometimes people call because they're mentally ill and they make up a story. We can always tell."
Callers who meet the criteria are eligible for end-of-life consultation with volunteer counselors who hold regular conferences to discuss and monitor cases. People deemed by a doctor to be within six months of death can get specific information about what is needed to speed up dying. Even so, many do not choose to end their lives after acquiring the means to do it. They may view having the medication as a kind of insurance against anxiety about pain and lack of control, but then decide on alternatives - palliative and hospice care, anxiety medication, therapy and open discussion of what to expect as their illness worsens.
"Many, many more die a natural death (than choose to end their lives)," said Van Aelstyn, who speaks to 20 to 25 clients a year.
One spring day she took me to visit a client who was almost 71 and had suffered from Parkinson's disease for more than 10 years. Molly Fisher contacted Compassion & Choices last year because she wanted someone she could talk to honestly as her disease progressed. She can still drive and takes medications that she feels help her, but she is finished with the denial stage, she said. Van Aelstyn talks to her every few weeks and visits occasionally.
"When I say my disease is getting worse people tell me I'm doing fine," said Fisher, sitting on a day bed in her Cloverdale home. "Even my doctor does that, and I scold him. I'm feeling more fatigued and fall asleep during the day. And I have a lack of balance."
Van Aelstyn sat next to her, her hand on Fisher's arm. The conversation ranged from Fisher's fall trip to Nepal, which she said was her last, to her health. In a slow, deliberate walk to cover the shuffling gait of Parkinson's, Fisher passed around dried fruit and nuts and offered fresh ice tea. She asked if Van Aelstyn had ever had clients who chose to die by refusing food and water, and she wanted to know what that was like. Van Aelstyn answered her questions, but was a long way from talking about planning for Fisher's death.
"I am not near the end of life ..." Fisher wrote last year after calling Compassion & Choices. "What I would like is to have an ongoing exchange with someone ... who can answer questions and provide information for me as I continue on my journey. And ideally that person and I can meet in person, in advance, and she/he would be available to be with me when I die."
There are no statistics for how many Compassion & Choices clients deliberately end their lives. But in Oregon, where statistics are rigorously compiled, a report on the first nine years of the law showed that about 60 percent of those who legally got lethal medication ended up using it. A total of 292 people died by taking life-ending medications, which can be prescribed after two doctos agree a patient will likely live six months or less and obtained after a 15-day waiting period. The median age was 70, and those who ended their lives were predominantly white. Most had some college education and lived in urban areas.
California legislators rejected a bill to legalize physician-assisted dying and last year shelved another measure. The legislation was opposed by religious groups who believe killing oneself for any reason is wrong, the American Medical Association and advocates for the elderly and disabled who fear it would sanction suicide of the most vulnerable. A different bill was pending before the state Assembly in early May, where it also was expected to face opposition. The measure would require doctors to provide terminally ill patients with the opportunity to get information about legal end-of-life options. Polls have shown that a majority of Californians support giving terminally ill patients the means to end their lives.
Compassion & Choices was formed in 2005 as a merger of two other groups, the Washington-based Compassion in Dying and End-of-Life Choices, which was formerly the Hemlock Society. Leaders and volunteers there distance themselves from the loaded word "suicide." They prefer the more neutral terms "hastened" or "patient-directed dying," which have been officially embraced in Oregon but which opponents think are sanitized euphemisms. Supporters say there is a distinct line between suicide and a deeply considered choice by the terminally ill at the very end of their lives.
"Assisting a suicide is still a felony," said Coombs Lee. "We call it aid in dying. We don't break the law."
As a memorial to Julie, her youngest daughter set pictures of her on the mantel of her home. There were shots of her as a tow-headed toddler, as a young wife and mother with her small children and of trips to Colorado and the Pinnacles. In one of the last pictures from a hike at the Pinnacles, she is wearing a neck brace, but is raising a hand victoriously in the air.
Her expression hints at some of the pain she must have been feeling. But she was the type to fight through the pain, just as she struggled to create an independent life. Born in Europe, Julie moved to the East Coast as a young mother, and then to the Bay Area. She and her husband divorced when she was in her 40s, and Julie, who had been a stay-at-home mom, went back to school and earned a master's degree in social work. She found a job in a rural mental health center.
After 13 years at a job she loved, Julie retired because of increasing pain from rheumatoid arthritis. She moved to be closer to her family and volunteered with the Red Cross and as a hospice worker. The arthritis deformed her fingers and feet and made her neck so stiff she had to receive injections to relieve the pain. Then a few years ago, a chest X-ray revealed the lung cancer. She appeared to have masses in both lungs, said her youngest daughter. Julie considered her options and, given the seriousness of the diagnosis, decided that she wanted only palliative care and radiation targeted to the tumors, which allowed her to breathe more easily.
One of the first things she did after her diagnosis was to call Compassion & Choices. She met the criteria for becoming a client and was referred to two Northern California volunteers, one of them Van Aelstyn.
"Julie wanted me to know her diagnosis," said Van Aelstyn, as she sat in a San Francisco cafe when we first met. "She brought her records and power of attorney for health care. She wanted to know what our methods were to hasten death."
Julie decided on hospice care, but she also asked her doctor for a prescription sleeping medication. She saved up three months worth as part of an option to end her life, if it became unbearable.
When Julie felt well enough, she'd visit with family, friends or take walks. She continued to care so much about global warming, health care and other issues that she insisted on voting in an election the week before she died even though she had to mark her ballot lying down in the back seat of a car. She also bought copies of "Plan B 3.0: Mobilizing to Save Civilization," a book about climate change, for her children and inscribed them as a parting gift. She wanted them to look after the world she was leaving.
And she thought deeply about the end-of-life decision before her. Despite her conviction about her choice, it was not easy for her. She confided her uncertainty to her diary.
"Will I readily know when I have had enough or will there be a seesaw of emotions as my decline reaches the point of inability to do much of anything?" she wrote while she was still healthy enough to travel. "Even as I phrase these questions to myself, I am acutely aware of how difficult it is to prepare for your own death."
She was worried someone would intervene to stop her or that it wouldn't work. Her children also worried that something would go wrong. "She'd talked about the Oregon law," said her youngest daughter, but felt "tremendous sadness and anticipatory grief."
"Because of her clarity, we decided to support her. She described it as a journey and she said it was important that we do it together. We tried to support the idea that it was about having the option. We didn't want her to feel she had to use it."
A month after her mother died, she and her husband sat at the dining room table recalling how they grappled with Julie's decision. Both dabbed tears from their eyes as they talked about trying to wrestle with one of life's most profound decisions.
"I wasn't ready for her to go," said her daughter. "I don't think I'd ever be ready. I said to her on the last day, 'I've never felt more torn in my life. I don't want you to go on suffering, but I also don't want you to go.' "
"Julie was so vibrant," said Van Aelstyn, who saw and spoke with her intermittently over two years, but came to cherish their contact. When there is a "hastening," she's always deeply affected, said Van Aelstyn. "I feel like it's a gift that I'm able to participate," she said. And afterward, she needs time to reflect and recover.
Van Aelstyn, who grew up in Sacramento and trained as a nurse, worked with Alzheimer's patients and ran a resource center for mentally impaired adults until 1987, when two of her closest friends perished in a plane crash.
"My husband turned to me and said, 'We need to do something.' "
They joined the Peace Corps and served two years in Granada, where Van Aestyln worked with Alzheimers patients and the mentally ill. When she returned home, she did home health care and hospice work while studying for a degree in English as a second language. She also found herself a caretaker to elderly parents and other relatives. Her father and brother died, and she began to think about what hospice care could and could not accomplish.
But it was her son, Nico Van Aelstyn, who led her to the assisted dying movement. A lawyer for a San Francisco law firm when the Oregon law was under Supreme Court review, he wrote a pro bono brief in support of it and passed his mother's name along to the organization's leaders. The high court upheld the law in January 2006.
Alan Carpenter found his way to Compassion & Choices because of his belief that medicine was not doing a good enough job for patients. Carpenter, a volunteer for about a decade who works with two to three clients a year, appears as self-contained as Van Aelstyn is animated. Tall and lanky at 77, he is intensely practical. Within 15 minutes of our meeting, he offered to show me his advance directive - the legal document that states his medical wishes should he no longer be able to communicate them. He and his wife, Betsy, who teach a class on advance medical planning at Stanford's medical school, were childhood sweethearts who married others and found each other later in life. They decided to, as Carpenter says, take their combined 19 children and grandchildren "off the hook" and not only make their own dying wishes explicit but also get rid of their house and most of their excess possessions while they could still do it. Then they moved to the Sequoias, a retirement community in Portola Valley that offers independent living, assisted living and skilled nursing care.
This downsizing took place well after Carpenter had stopped practicing medicine. He said it became clear to him after years of running a family practice in Los Altos that he could not serve his patients well if he couldn't spend time getting to know their values and concerns.
"The consequence was that as I insisted on practicing my brand of medicine, I was made aware that insurers and Medicare would not pay me for my time," he said.
He closed his office and briefly worked as medical director of a nursing home before retiring at what he considered a premature 64. He quickly realized, he said, that he missed his patients and they missed him. "I saw how it was with the old folks in the nursing home and what caring for them required," he said. "Nurses did a good job and doctors didn't. When I went through the deaths of my two parents and parents-in-law in the mid-'90s, it was clear to me that their deaths were very poorly orchestrated from a medical perspective."
All of this led him to following and supporting the passage of Oregon's law and the idea of end-of-life counseling with Compassion & Choices. To become a counselor who could give advice instead of medical care, he gave up his medical license.
"What I counsel people on is what physicians can't realistically accomplish, what they are not allowed to do," he said. He talks about pain and anxiety control, what treatments can accomplish, what can be done for symptoms at the end of life.
"The clients who come to me often are very eager to get the stash, the recipe for their own deliverance," he said. "I can't provide those things. I can tell them what some physicians have been known to provide, what some agencies in other countries might provide, what other professionals might be able to provide. I am merely answering questions. I am not providing a thing."
The day before Julie died, her children and Van Aelstyn offered suggestions to make her more comfortable. They talked about taking her to the hospital, but she didn't want that. She'd made her decision. She knew how she wanted to die. She wanted a light lunch, followed by time to reminisce with her family. Van Aelstyn was to be there, to support the family, but also to be a witness that Julie carried out her actions on her own.
When she arrived, Julie was on the couch looking with her children at the photo albums she'd made from her world travels. Having accepted a request to be interviewed, she made an audio record of her answers to questions, relayed by Van Aelstyn, about Compassion & Choices. Then she resumed going through her memories, one decade at a time.
"It went on for a long time," said Van Aelstyn. "Sometimes they'd look at the (photo) albums. There were tears and laughter."
When Julie got to the new millennium, she said, "It's time." "I said, 'Do you really want to do this?' " said Van Aelstyn.
"She said yes."
Julie went into her bedroom, leaving her children in the living room, and lay down on her bed. She drank a mixture of orange juice and sleeping medication herself. It was thick and she drank it in one big gulp. "It tastes terrible," she said.
She invited her family in and they all knelt by the bed. Van Aelstyn had advised them what to expect: There might be some breathing that sounded as if Julie was suffering after she fell asleep, but she wouldn't be. In the end, that didn't happen. Her children sang her a lullaby she used to sing to them and she joined in for the first few lines and then fell asleep. They hugged her and told her they loved her. About a half hour later her heart stopped.
"It was very dignified and very peaceful and very sad," said her oldest daughter. She said her mother modeled an attitude that she hopes to follow "when it is my time to die."
"I never questioned her belief, always supported it and adopted it right away because her belief made so much sense to me," she said.
Julie's family continues to grieve because that does not end with an assisted death any more than it does with any other way of dying. No amount of planning prepares us for losing a parent. Julie had her own parting thoughts.
"My purpose and hopes are that people will really understand we do all die, and that dying at an old age is not the same as being very sick when you're 30 or 40 with cancer, and yes, fight if you can," she said on her last day. "But we are a growing-older generation. And if there's anything I hope to get across to people it's let's talk about it. You have to think of it as the ending, just like birth was your beginning. There was no Julie before my birth, and there'll be no Julie after my death, except whoever has known me and appreciates me, or thinks of me in this way or that way or the other way. And who can carry that on. There's no need to be, you know, famous, or top of the line, or top dog, in order to have a meaningful life in which you can look back and say, wow, that was quite a life."