Hawaii ranks 49th in the nation for use of home health care services during the last six months of someone’s life. Videos from ACP Decisions show patients what their options are at the end of life.
Lena Katakura’s father is 81. He was recently diagnosed with esophageal cancer and doctors don’t expect him to survive the illness. Katakura says a nurse at their Honolulu hospital gave them a form to fill out to indicate what kind of treatment he’d want at the end of life.
“And we’re looking through that and going, ‘Oh my, now how’re we going to do this?’ ” says Katakura. Then the nurse offered to show them a short video and Katakura and her father said “Great!”
While, the majority of Americans say they’d rather die at home, in many cases, that’s not what happens. Among people 65 years of age or more, 63 percent die in hospitals or nursing homes, federal statistics suggest, frequently receiving treatment that’s painful, invasive and ultimately ineffective. And Hawaii is one of the states where people are most likely to die in the hospital.
The video that Katakura and her father watched pulled no punches. It begins: “You’re being shown this video because you have an illness that cannot be cured.” Then, in an undramatic fashion, it shows what’s involved in CPR, explains what it’s like to be on a ventilator, and shows patients in an intensive care unit hooked up to multiple tubes. “You can see what’s really going to be done to you,” says Katakura.
And you can decide not to have it done. The video explains that you can choose life-prolonging care, limited medical care or comfort care.
The simple, short videos are being shown in medical offices, clinics and hospitals all over Hawaii now. And they’re being shown in many of the languages that Hawaiians speak: Tagalog, Samoan and Japanese, among others. Lena Katakura and her father watched the video both in English and in Japanese.
“Some patients have said, ‘Wow, nobody’s ever asked me what’s important to me before,’ ” says Dr. Rae Seitz. She’s a medical director with the non-profit Hawaii Medical Service Association (HMSA) — the state’s largest health insurer. She says there are a number of obstacles that keep patients from getting the treatment they want.
Some health care providers may talk about it, she says, some may not; and each doctor, clinic, hospital and nursing home may have different standards. But also “it takes a lot of time, and currently nobody has a good payment system for that,” says Seitz.
Out of 50 states, Hawaii ranks 49th in the use of home health care services toward the end of life. Seitz wanted to change that and she’d heard about these videos produced by Dr. Angelo Volandes of Harvard Medical School. She thought maybe they could help. So she brought Volandes to Hawaii to give a little show-and-tell for some health care providers.
“I frankly was astounded,” Seitz says, “at how excited people became when they saw these videos.”
Volandes thinks they were excited and — maybe — a little bit relieved.
“Physicians and medical students aren’t often trained to have these conversations,” says Volandes. “I, too, had difficulty having this conversation and sometimes words aren’t enough.”
Volandes is the author of a book called The Conversation. It tells the stories of some of the patients he encountered early in his career and their end of life experiences. He describes aggressive interventions performed on patients with advanced cases of cancer or dementia. In the book, they suffer one complication after another. There is never a happy ending.
But the videos are not designed to persuade patients to opt for less aggressive care, Volandes says. “I tell people the right choice is the one that you make — as long as you are fully informed of what the risks and benefits are.”
Still, studies show that the vast majority of people who see these videos usually choose comfort care — the least aggressive treatment. That’s compared to patients who just have a chat with a doctor.
Every health care provider in Hawaii currently has access to the videos, courtesy of the Hawaii Medical Service Association. The impact on patients will be studied for three years. But one thing that won’t be examined is how patients’ choices affect cost, Seitz says.
“When a person dies in hospice care at home,” she says, “it’s not as costly as dying in the ICU. But it’s also more likely to be peaceful and dignified. So people can accuse insurance companies [of pushing down costs] all they want to, but what I would look at is: Are people getting the kind of care that they want?”
Katakura’s father is. He’s at home with her, and receiving hospice services. After seeing the videos, she says, he chose comfort care only.
If she were him, she’d want that too, Katakura says. “So I was satisfied with his decision.”
Now, she says, she needs to make a decision for the kind of care she wants for herself at the end of life — while it’s still, she hopes, a long way off.
Watch A Sample Video
This excerpt from an ACP Decisions video was posted by NPR member station KPCC. You can view the full catalog on ACP Decision’s website, but they note that the videos are not meant for individual use; they’re designed to be part of a conversation between providers and patients.
One morning a social worker stopped by her hospital room. They began a conversation that would be inconceivable to most teenagers: If death approached and AshLeigh could no longer speak, what would she want those who surrounded her to know?
The social worker showed AshLeigh a new planning guide designed to help critically ill young patients express their preferences for their final days — and afterward.
If visitors arrived when AshLeigh was asleep, did she want to be woken? If they started crying, should they step outside or talk about their feelings with her?
What about life support? Funeral details? Who should inherit her computer? Or Bandit, her dachshund?
AshLeigh grabbed her blue and hot-pink pens, and began scribbling furiously.
When she died in July, she was at home as she had requested. Per her instructions, she was laid out for the funeral in her favorite jeans, cowgirl boots and the white shirt she had gotten for Christmas. Later, the family dined, as AshLeigh had directed, on steak fajitas and corn on the cob.
“I don’t know what I would have done if I’d had to make these decisions during our extreme grief,” said her mother, Ronda McHale. “But she did it all for me. Even though she got to where she couldn’t speak, AshLeigh had her say.”
A national push to have end-of-life discussions before a patient is too sick to participate has focused largely on older adults. When patients are under 18 and do not have legal decision-making authority, doctors have traditionally asked anguished parents to make advanced-care choices on their behalf.
More recently, providers have begun approaching teenagers and young adults directly, giving them a voice in these difficult decisions, though parents retain legal authority for underage patients.
“Adolescents are competent enough to discuss their end-of-life preferences,” said Pamela S. Hinds, a contributor on pediatrics for “Dying in America,” a 2014 report by the nonprofit Institute of Medicine. “Studies show they prefer to be involved and have not been harmed by any such involvement.”
There are no firm estimates of the number of young patients facing life-threatening diseases at any given time. Cancer, heart disease and congenital deformities together account for an estimated 11 percent of deaths among adolescents, about 1,700 per year. And many thousands live with the uncertainty of grave illness.
“If you are one of the children for whom this matters, or one of their parents, this is a huge opportunity,” Dr. Chris Feudtner, a pediatric palliative care physician and ethicist at the Children’s Hospital of Philadelphia, said of these conversations.
But shifting from hushed talks with parents to conversations that include young patients has met some resistance. Many doctors lack training about how to raise these topics with teenagers. Until recently, most clinical teams believed that adolescents would not understand the implications of end-of-life planning and that they might be psychologically harmed by such talk.
Sometimes when providers do make the attempt, parents or patients may abruptly change the subject, fearful that by joining in, they are signaling that they have abandoned hope.
Yet research shows that avoiding these talks exacerbates the teenage patient’s fear and sense of isolation. In a 2012 survey examining end-of-life attitudes among adolescent patients with H.I.V., 56 percent said that not being able to discuss their preferences was “a fate worse than death.” In a 2013 study, adolescents and parents described such directed family talks as emotionally healing.
Teenage patients can guide, even lead, their medical care, Dr. Feudtner said. But more important, including them in the discussions acknowledges a terrible fact that patient and family members struggle to keep from each other: the likelihood of death.
“Then people can be together, as opposed to alone,” Dr. Feudtner said. The teenage patient feels free to address intimate topics, including “the scariest aspects of the human condition — mortality and pain — but also love, friendship and connection.”
Creating a Legacy
Karly Koch, a college student from Muncie, Ind., has been treated for many serious illnesses, including Stage 4 lymphoma, all related to a rare genetic immune disorder. Her older sister, Kelsey, died of the condition at 22.
Last spring, Karly, then 19, developed congestive heart failure. Her renal arteries were 90 percent blocked. As Karly lay in intensive care at the National Institutes of Health, a psychotherapist who had worked with the family for years approached her mother, Tammy, with the new planning guide.
“Do we talk about dying?” Mrs. Koch recalled wondering. “Maybe Karly hasn’t thought about it — do we put it in her head?”
“We had already buried a child and had to guess what she wanted,” she continued. “So we wanted Karly to have a voice.”
Karly’s reaction? “She said it wasn’t like we were telling her something she didn’t already know,” Mrs. Koch said.
The guide used by Karly Koch and AshLeigh McHale is called “Voicing My Choices.” While there are end-of-life workbooks for young children and their parents, as well as planning guides for older adults, this is the first guide created for — and largely by — adolescent and young adult patients.
The intention was to create a way for them “to make choices about what nurtures, protects and affirms their remaining life and how they wish to be remembered,” said Lori Wiener, a social worker and principal investigator on the research that led to the planning guide.
In the two years since its introduction, more than 20,000 copies have been ordered by families and more than 70 medical centers from Aging With Dignity, the nonprofit that publishes it. “Voicing My Choices” has also been translated into Spanish, Italian, French and Slovak.
In straightforward language, the guide offers young patients check boxes for medical decisions like pain management. Another section asks about comfort. Favorite foods? Music? When visitors arrive, one option could be: “Please dress me, comb my hair and do whatever else is needed to help make me look like myself.”
What gives you strength or joy, the guide asks. What do you wish to be forgiven for? And who do you wish to forgive?
“These are the things that are important to know about me,” one list begins. AshLeigh, who would dance and sing down the aisles of Walmart, wrote: “Fun-loving, courageous, smart, pretty wild and crazy.”
Devastating disease can leave anyone feeling powerless, so a means to assert some control can be therapeutic. For adolescents, who are exploring and defining identity, Dr. Feudtner said, “you can express who you are, what you are and what you care about.”
By offering young patients opportunities to write farewell letters, donate their bodies to research and create rituals for remembering them, the planning guide allays one of their greatest fears: that they are too young to leave a meaningful legacy.
And so the ability to do it can galvanize them. Lauren Weller Sidorowicz received a diagnosis of metastatic bone cancer at age 18. Determined and outspoken, she joined a focus group of young patients at the N.I.H. whose opinions led to the creation of the planning guide. Days before she died in 2011 at age 26, Ms. Sidorowicz paged Dr. Wiener, frantic to include a final thought in a farewell letter.
To her grandmother, she wrote, “I hope there is potato salad in Heaven as good as yours.”
There are no standards for when and how to introduce a critically ill teenager to end-of-life planning; there are only intuition and experience. Many pediatric cancers have favorable prognoses, Dr. Feudtner said, and raising the topic prematurely may provoke anxiety and fear.
More often, though, doctors postpone the discussion too long, until the patient is too sick to take part. Dr. Maryland Pao, a psychiatrist at the National Institute of Mental Health who helped design the guide, recalled the despair of a mother whose dying son could no longer speak.
“I have no idea what he wants,” the woman told her. “He’s 17, but we never communicated about this.”
Dr. Wiener believes preparation should be done soon after diagnosis, but when the patient is stable. Exploratory talks, she said, become steppingstones, each readying the patient for the next one.
Still, providers encounter problems. “If the family doesn’t want to do it, you’re stuck,” Dr. Pao said. “There’s a lot of magical thinking — that if you talk about it, you’ll help them die.”
And sometimes teenagers themselves put up obstacles to having frank family discussions. Some young patients, for example, did not want Dr. Pao to tell their parents that they were ready to stop treatment. Rather than say as much to their heartbroken relatives, some will pour out their feelings on social media.
Erin Boyle, 25, had been treated for autoimmune disorders since she was 4. Last August, as she prepared for a stem cell transplant for leukemia, N.I.H. researchers asked whether she felt comfortable looking through “Voicing My Choices.”
Ms. Boyle completed most of the guide. At that time, she recalled, “the decisions felt theoretical rather than imminent.”
But shortly after the transplant, she relapsed.
“It was comforting to get my wishes down on paper and free myself to live without worrying about the details of dying,” she said recently.
She died on Wednesday. Her body is going to the N.I.H. for a research autopsy, as she wished, her mother, Ellen, said.
For doctors, end-of-life discussions with adolescent patients can be wrenching. “You have to be self-aware and reflect on your own experiences with grief and loss,” Dr. Pao said. “It’s hard not to be anxious if you have children. You feel helpless. It makes you face your own mortality.”
On July 25, Karly Koch had an experimental bone marrow transplant. Her family calls that date her “re-birthday.” With 12 medications a day and a surgical mask, she is out and about in Muncie.
Karly takes classes to become a physical therapy assistant. She is a youth leader at her church, where her boyfriend is also a member. She delights in “normal people” activities.
Her parents keep Karly’s copy of “Voicing My Choices” in their bedroom cabinet. “It isn’t gloomy to go through,” Karly said. “It’s kind of fun to get your feelings out there.”
“Now, looking at it,” she continued, “I think I’d like to add some things.”
I recently attended a lecture given by an eminent art historian about how the emotions of animals and humans have been depicted in artworks over the centuries. At one point in his talk he showed a photo of Sir Edwin Landseer’s 1837 painting, “The Old Shepherd’s Chief Mourner.” The central figure in this painting is a dog who rests his head on the simple wooden coffin containing the body of his human companion, obviously the “old shepherd” in the painting’s title. This scholar’s comment was that this was one of the most perfect representations of grief in a dog. He went on to say, “The fact that this dog refuses to leave this man’s side, even after his death, highlights the close relationship that the dog and the man have had and it also demonstrates the depth of the grief that the dog is feeling.”
I have always been very fond of this painting and moved by the obvious emotional bond and loyalty that the dog clearly seems to feel for his master. There is no doubt that a dog in this situation would be feeling sorrow, perhaps depression, and a deep sense of loss. However behavioral scientists often debate the question as to whether dogs actually feel grief when a loved one dies. Those that doubt it suggest that grief requires some concept of the nature and implications of death. This is beyond the mental ability of human children before the age of four or five years, and since evidence suggests that mentally and emotionally dogs are equivalent to humans aged two to three years of age (click here or here to read more about this topic) this would imply that dogs do not yet have the capacity to understand that concept as well.
To get an idea as to what may be going on in a dog’s head when a loved one dies we can look at what goes on in the mind of a child in the two to five year age range. These children do not understand that death is irreversible. It is common for a young child to be told something like “Aunt Ida has died and won’t be coming back,” only to have the child ask a few hours later “When will we get to see Aunt Ida again?” Children do not comprehend that the life functions of their loved one have been terminated and this is reflected in their questions as they try to understand the situation. They ask things like: “Do you think we should put a sandwich or an apple in Grandma’s coffin in case she gets hungry?” “What if Daddy can’t breathe under all that earth?” “Will Uncle Steve be hurt if they burn him?” “Won’t Cousin Ellie be lonely in the ground by herself?” In the absence of an understanding of death there can be pain and sorrow and depression, but the behavioral scientists suggest that this is different from the more adult feelings of grief.
In my own home, I saw the heartache and sorrow that the loss of a loved one could bring to a dog when my cherished Flat-coated Retriever, Odin, died. My Nova Scotia Duck Tolling Retriever, Dancer, had lived with Odin every day since Dancer was eight weeks of age. They would play together for hours and simply seemed to enjoy each other’s company. With Odin now gone, Dancer systematically looked at each of the four locations where his friend would go to lie down. After doing this several times he wandered to center of the room, looking around forlornly, and whimpering. His anguish only gradually wound down and it was several weeks before he stopped checking all of the places that Odin should have been whenever he came home from a walk. Much like one might expect from a child who did not have the concept of the permanence of death Dancer never gave up on the idea that Odin might reappear. Up through the last year of his long life Dancer would still rush toward any long-haired black dog that he saw, with his tail batting and hopeful barks as if he expected that perhaps his friend had returned.
This is what I think about when I see things like the photograph of Jon Tumilson’s funeral. After the Navy SEAL was killed in Afghanistan in 2011, more than 1000 friends, family, and and community members attended the funeral in Rockford, Iowa. The mourners included his “soul mate” Hawkeye, a black Labrador retriever. With a heavy sigh Hawkeye lay down in front Tumilson’s flag-draped casket. There, the loyal dog stayed for the entire service. Was he grieving? No doubt he was feeling depressed, sad, and lonely, but also he might well have been waiting, hoping, that his master would return. Perhaps he might get out of the coffin and return to a life with the now lonely dog. This might well be the motivation behind the dogs who have waited for many years at the graves or other familiar sites associated with lost loved ones. Yes there is sorrow, but perhaps something more positive than grief. Becaise dogs do not have a the knowledge that death is forever, at least there is the option to hope – a hope that their loved one might come back again.
Hawkeye lays near the casket of Jon Tumilson
Dogs, in their ignorance of the true meaning of death, when driven by their unhappiness and motivated by their hope, may sometimes engage in desperate or irrational acts to deal with their sorrow because of separation separation from someone dear to them. Consider the case of Mickey and Percy. As in the case of Dancer and Odin we are again dealing with a dog who has lost a housemate and a friend. Mickey was a Labrador Retriever owned by William Harrison and Percy was a Chihuahua that was given to Harrison’s daughter, Christine, when Mickey was already a young adult. Despite their size and age differences, the two dogs were good friends and playmates until one evening in 1983 when Percy ran out into the street and was hit by a car. While Christine stood by, weeping, her father placed the dead dog in a crumpled sack and buried him in a shallow grave in the garden.
The depression that fell on the family seemed to affect, not only the humans, but also Mickey, who sat despondently staring at the grave while everyone else went to bed. A couple of hours later William was awakened by frantic whining and scuffling outside the house. When he investigated the noise, he saw to his horror that the sack in which he had buried Percy was now laying empty beside the opened grave. Next to it, he saw Mickey, who was in a state of great agitation, standing over Percy’s body, frantically licking his friend’s face, nuzzling and poking at the limp form in what looked like a canine attempt to give the dead dog artificial respiration.
Tears filled the man’s eyes as he watched this futile expression of hope and love. He sadly walked over to move Mickey away when he saw what looked like a spasm or twitch. Then, Percy weakly lifted his head and whimpered. It would be nice to believe that it was some deep sense in Mickey that had recognized there was a faint spark of life in the little dog, however it is more likely that it was his lack of understanding of death that was behind his actions. Rather than being swamped by grief over the permanence of dying, Mickey was left with nothing but hope for the return of his well-loved little housemate. Hope seems to have motivated him to make one last try to save his tiny friend — and this time it worked! Complete Article HERE!
LOS ANGELES–Last June, terminal brain- cancer patient Brittany Maynard, age 29, ended her life after moving from California to Portland, Ore., to take advantage of that state’s “death with dignity” law allowing for physician-assisted suicide in restricted cases.
Given six months to live, Maynard announced her wish to end her life in a YouTube video that placed her in the national spotlight. In Oregon, after terminally ill patients have their assisted suicide request approved by two physicians, they can choose to take a fatal prescription provided by a doctor.
Unlike Maynard, most people face the end of their lives in old age. Although very few people at any age wish for doctor-assisted suicide, everyone hopes t0 die with dignity in the 21st century, when modern science promised to extend average live expectance to 100 years–but can also prolong death artificially.
“James,” who asked not to be identified, recently spoke to a group of reporters at the at the Cedars Sinai Medical Center’s Supportive-Care Medicine Program in West Los Angeles. The program provides palliative and hospice care to very sick or terminally ill patients.
The program helped James to spend his time with his wife, a terminal cancer patient, and prepare for her death, especially during her last 10 days. He recalled, “My wife used to say often that she wanted to pass away peacefully. Now I am satisfied that she did so, having spent the remaining time with her loving ones like family, friends and relatives.”
When his wife’s breast cancer spread to her brain, she chose to enter the hospital’s hospice program, rather than begin painful and difficult chemotherapy, which offered little help in her case.
Shedding a tear, James said, “All my wife got was just medication to reduce her pain, and she had a peaceful period before death.”
Koreans Choosing Hospice Increasing
Koreans who choose the hospice services are increasing gradually. John Kim, who was given three-to-six months to live due to stomach cancer, also chose hospice services instead of chemotherapy. Hospice staff visited his apartment every other day to control his pain and nutritional status.
Kim said, “At first, to live even a little bit longer, I considered medical treatment, but then I realized that I do not want to waste my time getting chemotherapy that would not make me live longer.” Instead of being weakened by the chemotherapy, he said, “I would like to finish what I have to do before death, being with my children and friends.”
Kim’s oldest daughter, 44-year-old “Karen,” (not her real name) said, “ I didn’t agree with my father’s decision, but now I get comfort when I see his relaxed face.”
Karl Steinberg, MD, Chief Medical Officer, Shea Family Health in San Diego, explained, “People tend to regard hospice as a place you visit before you die, but actually, you can get the hospice care either at home or a hospital.”
Steinberg continued, “While in hospitals, doctors put a priority on getting rid of cancer and then pain; hospice staffs do the opposite. Experts prescribe differently according to the person and his symptom to abbreviate the pain. They help patients keep their dignity until the last moment before facing death.”
The Somang (Hope) Society
Koreans in Los Angeles are changing perceptions of hospice care partly because of the “well-dying” campaign of the Somang (Hope) Society, which was founded in 2007. The nonprofit’s president, Boonja Yoo, started the “well-being” movement to inform older adults how to live well, and the campaign evolved into the “well-aging,” to help people better prepare for life after retirement. Eventually, the group also launched the “well-dying” campaign inform older people how to prepare for death.
“Personally,” Yoo revealed, “as my husband and brothers passed away, I realized the more you prepared for death, the more beautifully you can finish your life.”
Yoo, who been awarded the South Korean government’s National Magnolia Medal for her international efforts in drilling water wells in remote areas and early childhood education, decided to develop the well-dying campaign based on her 20-year career as a nurse. She saw many patients at the end of their lives, as well as their family members, while she worked at a hospital, caring for burn patients, and at a nursing home.
She explained that the well-dying program is assisting Korean seniors to develop living wills, in which people can make legacy statements about their life lessons and values; their funeral preferences; possible organ donation; and advance health care directives, instructing other about their treatment near death, in case a coma, dementia or other problem prevents them from stating their wishes.
Advance-care planning is not only for patients, but also for their family. The number of living-will testaments and advance directives written so far is about 9,300. Also, 750 people have volunteered to be organ donors when they die. And 28 who died actually had their organs save the lives of others.
Unfortunately, Yoo said, Koreans are deterred from planning by their “taboo culture of death.” For example, she went on, “There are many people who die too painfully at the hospital because they didn’t really know much about the hospice service that can helps die without pain.”
Yoo explained, “People should not prepare for death by themselves, but plan with their family, as well.” Even though death is never an easy subject, she said, “I still expect that more Korean people could finish their life beautifully, as if they prepared for trip. Complete Article HERE!
Henry Fersko-Weiss working as an end-of-life doula for Gloria Luers, 92, of Cliffside Park. Fersko-Weiss helped start a doula program at The Valley Hospital and is beginning another at Holy Name Medical Center.
At 92 and with cancer spreading through her body, Gloria Luers knew she didn’t have much time. She began contemplating her final days, saying she wanted to be surrounded by family and to listen to stories and her favorite music.
But in those last days, she would also have strangers join the round-the-clock vigil at her bedside, people she had never met but who would nevertheless walk into her room knowing that she liked Italian tenors and the lumbering sounds of her great-grandchildren at play.
These strangers, all volunteers, would be there to comfort and console Luers and her family as death neared, making sure her final wishes would be followed and that her dying days paid homage to her living ones.
While hospice workers would manage her physical pain and guide her care, the volunteers, known as end-of-life doulas, would be there so family members could sleep and take a break, supporting everyone through what would be a long, exhausting experience. Their mission would be to help Gloria Luers and her family remain focused on her life instead of her illness and, in the process, gain some peace.
When the family decided to accept the offer by the hospice program to provide the doulas, her daughter, Denise Rich, said she was comforted to know that she wouldn’t be alone if her mother’s death came at a time when her husband was away at work and other family members couldn’t get there quickly enough.
“A big fear of mine is that I’ll be by myself and I won’t know what to do or what she needs,” said Rich, a Cliffside Park resident. “Now I know that there is someone out there who I can call when the time comes.”
The word “doula,” evolved from its ancient Greek meaning of “woman who serves,” has most often been used to refer to someone who coaches a mother-to-be through childbirth, providing emotional support through what can be a scary experience. Henry Fersko-Weiss, a longtime social worker, said it’s a concept that can be applied at the end of life.
Five years ago, he helped start an end-of-life doula program, a free service, at the hospice run by The Valley Hospital in Ridgewood, where the doulas are trained to recognize the signs of approaching death and schooled in easing the stress of a dying person and their families. He is now launching a second program, this one based at Holy Name Medical Center in Teaneck. Paid hospice staff supervise the two programs, but volunteers provide all the bedside support.
Fersko-Weiss, who also founded the International End of Life Doula Association, said he hopes doulas will one day become part of the standard of care at hospices, assisted-living residences and nursing homes around the world.
“We help people be born into the world, why wouldn’t we also want to help as they transition out of this world?” said Janie Rakow of Wyckoff, a doula with Valley.
Rakow and other doulas were there in the final days of Ellen Gutenstein’s life last April. Her husband and daughter often look back on what it meant for them to have seven strangers come in to help when she began to drift away.
By then, the 77-year-old Gutenstein’s physical world had shrunk to the bedroom she and her husband had shared for decades in their Ridgewood home, her hospital bed wedged next to the couple’s wood-framed, king-size bed. The room was crowded with medical equipment, and the tops of dressers and bureaus were filled with medicine bottles and the other detritus of terminal illness. But it was brightened by pictures of the grandkids and beloved collectibles.
As much as possible, for as long as possible, members of Gutenstein’s family wanted her to remain a part of their lives. But even with her husband sleeping in the bed next to hers, her daughter staying over most nights, and her two sons and grandchildren making regular trips in from out of town, it was hard for one of them to be awake and at her bedside every minute of her last days.
In the blur of that emotional time, Robert Gutenstein has forgotten the names of the doulas who spent three or fours hours each keeping watch while sitting in the chair next to his wife’s bed, including the one who was there at the end. But the family hasn’t forgotten the works they performed.
There was the one who lifted their spirits with her beautiful singing voice. There were the others who read aloud to Ellen from the “legacy book” the doulas had encouraged the family to assemble, an album of photos from vacations and major life events as well as letters and written reflections from her children, grandkids and friends.
“What stands out most to me about the doulas is that they were all so loving with someone they had just met,” said the Gutensteins’ daughter, Lisa Silvershein. “Somehow, they all seemed very familiar, like they just understood and were helping us to be prepared for what was coming.”
Kristen Tsarnas, a volunteer doula, said death is a subject in which society has not advanced for the better.
In the frontier days, when hospitals were few and far between, a family brought a loved one home to die and the community came to bear witness to the leave-taking. “This kind of tending to someone at the end of life is really an old thing that kind of disappeared from our modern society,” said Tsarnas, who lives in Allendale.
In describing her role as a doula, she often uses the word “witness.” “It’s sort of a way for the family to feel the significance of the moment — that this is an important enough event that some stranger came to my house to be there for the end of my mother’s life,” she said.
Her view is shaped by the sudden death of her stepfather when she was 18. He was hospitalized, but not expected to die. So she didn’t return home from college and her mother didn’t stay the night at the hospital. More than two decades later, both are burdened by his being alone when he died.
“No one should be alone in a hospital in a cold room when they die,” Tsarnas said.
Fersko-Weiss sees the companionship and comfort the doulas offer as “the missing piece of the hospice mission.”
Hospice programs provide dying patients and their families with a host of services — nurses, social workers, grief counselors, medicine and medical equipment — intended to ease pain and suffering. But hospices can’t offer round-the-clock staff and while their social workers and grief counselors attempt to prepare families for the final days, he said, many still find themselves overwhelmed by the changes that can unfold quickly at the end of life.
“In my years in hospice, I saw a lot of cases where people are kind of unprepared for the final day,” he said. “I think people don’t take it all in until it’s happening, and by then they are emotionally and physically exhausted.”
The doulas are trained in calming and soothing techniques, such as meditation, aromatherapy and therapeutic touch. Most don’t come from medical or counseling backgrounds, and they are not expected to take on the direct caregiving tasks that hospice staff and home aides perform. Their job descriptions are more amorphous — some see it as akin to social work, nursing or ministering. Others say the mission is simply to be present and ready to serve.
“A lot of our doulas are very spiritual, holistic kind of people who just have a calling to do this,” said Bonnie Schneider, who manages Valley’s doula service, which is offered as a no-cost service to patients in the hospice program.
At a recent training session for the 19 volunteers learning to be doulas for the Holy Name program, Fersko-Weiss stressed the importance of a lead doula paying early visits to a dying person to help create a “vigil plan” that spells out what that individual wants — candles burning, their hands held, poems read and the like. Such plans are shared with all doulas assigned to the case. The doulas need to be sensitive, Fersko-Weiss told the trainees, to the fact some families may have conflicts still playing out, so they should try to encourage family members to express their feelings of loss and to both seek and offer forgiveness.
Since Valley began its program in the fall of 2009, the doulas have participated in more than four dozen vigils, many in private homes, but some in nursing homes or in-patient hospice centers. The typical vigil lasts 24 to 48 hours, Schneider said, and the longest went eight days. Valley’s 40 doulas have worked with many other terminally ill patients and families, helping them to think about how they want the final days to play out.
The doulas are called in at the onset of what’s called the active dying stage, when they exhibit symptoms such as slowed breathing, a drop in blood pressure and a third day of refusing to eat.
For Bob Eid, a doula from Mahwah, being at a death is a profoundly moving experience.
“I think death is a very sacred moment,” he said. “I’m not uncomfortable around it.”
Before Coleen Shea made it her official calling to sit with the dying, family circumstances put her at the bedsides of three of her own.
The first was six years ago, when her 92-year-old grandmother died and the scene at the bedside was like something out of a Hallmark special, children and grandchildren lined up three deep around her bed.
“Everybody was able to lay a hand on her and to tell her what she had meant to them,” Shea said. “Her whole bedside was surrounded. It was exactly how anyone would want it to be. I left there thinking it was an immeasurable privilege to have been there.”
Shea also spent time with two uncles in their final days. Those deaths were less peaceful, but no less moving. She recalls when one uncle suffered a painful seizure a few days before his death. She comforted him by telling him that he had fought bravely and that it was all right to let go.
“I sort of felt like I had made a difference,” she said.
The Glen Rock mother of two compares her doula position to that of a nurse who must move from room to room, tending to different tasks and needs in each.
She doesn’t expect a family to get to know her. Instead when she walks into a new home, she scans her surroundings for the things that most need doing — someone in need of a break or a comforting word, or a patient with arthritic hands who might enjoy a massage.
“I’m just as afraid of dying as anybody else,” she added. “But for whatever reason, I don’t shy away from being there.”
Rakow, who volunteers for both the doula and hospice programs at Valley, said she is routinely asked whether being present at so many deaths makes her sad.
“It’s actually the opposite. We feel humbled to be there and uplifted by the expressions of love we witness,” she said. “There are times when family members have had tough times with each other throughout their lives, and you’ll see how that just strips away at the end, and how they come together. It’s incredibly moving.”
Nearly a year after his wife’s death, Robert Gutenstein still regularly pages through her legacy book. The last picture, taken just a few days before her death, is of Ellen celebrating Easter dinner with her family and friends.
“The doulas were just wonderful to her,” he said. “They engaged her in life so that she wasn’t a body sitting in a corner isolated from things.”
The family came to rely on the ever-present doulas in Ellen’s final days. “At that point, you don’t want to leave her alone,” said Silvershein, Ellen’s daughter. “Because the doulas were there, we were able to sleep. It was just kind of nice to put somebody else in charge.”
Silvershein was headed to bed a little after 11:40 on Friday, April 25, when she stopped into her parents’ room to say good night. She and the doula noticed a change in her mother’s breathing pattern and woke her father, who had been asleep for a few hours in the bed next to his wife’s.
“I’m half-asleep,” Robert Gutenstein recalled. “I put my hand on her hand, she gives me a squeeze, and that was it. She stopped breathing.”
Rakow, who had served as the lead doula on Ellen’s case, arrived at the home with bagels for breakfast the next morning. Several doulas attended the funeral. A month later, Rakow and Silvershein together talked about the shared experience.
Silvershein credits the doulas with helping her find her way in those emotional days. Because a person’s hearing can be the last sense to go, the doulas encouraged her to keep reassuring her mother, even after she drifted out of consciousness.
“They told me, ‘Tell her you love her, tell her that Dad is going to be OK, and that we’re all going to be OK,’Ÿ” Silvershein said. “I don’t know that I would have thought to say all of those things without the doulas being there. I feel like they just guided us through the whole experience.”
A month ago, on a visit with Gloria Luers to plan what she and her family might need from the doulas, Fersko-Weiss asked about the sights and sounds that bring her comfort. In addition to music, she talked of the frequent visits of her young great-grandchildren, who call her “GGMa.”
Her memory still firm and clear, she regaled him with anecdotes from a girlhood living without a mother, her husband’s war years and the years she spent tending to children and grandchildren. “I am good at telling stories, and I have some good ones to tell,” Luers said. Fersko-Weiss pledged to write them down and help her family assemble a legacy book for her loved ones.
Luers began to decline a week ago, no longer able to speak and unable to get out of bed, and was moved to the Villa Marie Claire hospice in Saddle River. Her daughter stayed over most nights and her son and grandchildren visited often.
On Wednesday, five doulas began taking shifts, playing songs sung in Italian by Andrea Bocelli and sitting with family members as they shared stories and talked about the Fort Lee home where Luers raised her family.
“It was a lot of reminiscing and talking about the things that stood out about her in life,” Fersko-Weiss said.
About 9 a.m. Friday, as Gloria’s breathing became shallow, Fersko-Weiss woke her daughter, who was sleeping in another room after being up much of the night with her mother.
Gloria Luers died about 15 minutes later, with both of her children, a grandson and Fersko-Weiss — not a stranger anymore — at her bedside. Complete Article HERE!
SEATTLE — Turning a death bed into a garden bed is the idea behind the Urban Death Project, a non-profit group looking to provide a human composting facility.
The facility would be a repository intended for city dwellers to turn their departed into compost suitable for use in a garden or orchard.
“I love the idea of growing a tree out of someone I love that I’ve lost,” said Urban Death Project founder Katrina Spade.
She came up with the concept in 2011 and was awarded a $80,000 grant in 2014 from Echoing Green, a New York based environmentally conscience philanthropy.
“Cemeteries don’t hold any meaning anymore,” said Spade.
She see the tons of metal, wood and cement that are buried each year — as well as the hundreds of gallons of embalming fluid — as wasteful and unnecessary. She doesn’t oppose an person’s right to choose a traditional burial, but she wants to provide a more environmentally friendly option.
“As long as it’s a safe and sanitary and effective way of bringing a body into another state, I think there should be many options,” said Spade.
She’s proposing to build a three story building where family and friends would bring in their deceased loved ones wearing only a biodegradable shroud.
“You’d lay your loved one into woodchips and sawdust — that would be the moment you say goodbye,” Spade said. “Then a month and a half later, take some soil away and have another ceremony of your own, maybe grow a tree with your loved one’s soil.”
She says with proper care, it takes about six weeks for a body to full decompose, bones and all, into a course granular soil.
“The bodies are not touching each other in any way at the beginning, but once they become composite material, there will be mixing and finishing and that’s when that material is no longer one person,” Spade said. “You’ll be getting your grandmother, but you’ll also be getting your grandmother’s neighbor.”
Spade knows her project faces many legal and zoning hurdles. Washington’s current state law requires the bodies of humans to be buried, cremated or donated to science. If bodies are transferred out of state, then the laws of the next state go into effect. Many states are legalizing water cremations, a process known as alkaline hydrolysis.
Spade thinks it’s time to flesh out new forms of burial, especially since many urban centers no longer allow new cemeteries to be built.
Lynne T. McGuire, president of McGuire Funeral Service Inc in D.C., said keeping up with important documents is critical to prepare for death.
Brandi Alexander was relieved when she got the news that her father’s cancer was in remission in 2003. Neither she nor her five siblings subsequently took the time to talk with their father about his final wishes in the event he became ill or died.
But in November 2010, Alexander flew home from Denver to New Orleans for Thanksgiving and learned that her father’s cancer had returned. Less than two months later, Ferdinand Alexander was dead.
“”When my father came out of remission, he declined very quickly and none of us knew what he wanted,” Alexander said. “I had never had a conversation with him. I had all of this knowledge about end of life things but I had never talked to my own father who had a terminal disease. He was remarried and his new wife was making all of the decisions.”
Alexander’s comments came at the conclusion of a forum entitled “The Journey Home: An African American Conversation,” in which senior citizen advocates, morticians, pastors, financial planners and even an emergency room physician came together at SunTrust Bank to talk about death, dying and end-of life choices.
“My father had six kids and we didn’t agree with his wife, who had the power of attorney. And instead of honoring his life we were battling about his death,” said Alexander, regional campaign & outreach manager for Compassion & Choices, an end-of-life advocacy group that used to be known as the Hemlock Society.
While talking about death and dying is almost taboo in the African American community, Daniel Wilson, national director of Compassion & Choices said, “We have to look at the whole spectrum of what end-of-life looks like, from the point of diagnosis to what you need to look for when you are choosing a physician to should I go to hospice.”
John M. Thompson, director of the D.C. Office on Aging, said, “In the District of Columbia we have 104,000 seniors and coming to an event like this is so important not only for the seniors but for their caregivers and the young to understand how to properly plan for the future.”
“Who’s going to be responsible for executing that will, if mom and dad dies?” Thompson said. “This is a chance to have a peaceful ending for mom and dad as they move on with life and live in harmony together.
Dr. Melissa Clarke, a local emergency physician, said, “I have been in too many situations where people have come in and based upon their age should have an advance health-care directive and it should be clear what should be done for them, but it’s not.”
Lynne T. McGuire, president of McGuire Funeral Service Inc. in the District, said that she wishes that she could have the opportunity to talk with families before someone dies. “It is bigger than just funeral planning. The whole end of life spectrum: How do I want to be cared for ? Folks are starting to talk about it, but we really do need documentation.”
For example, McGuire said the funeral home buried a woman who was 102 and learned too late that her husband who died 60 years ago, was buried at Arlington National Cemetery and there was space for her. “There was a grave reserved for her but it is too late.”
Tiffany Tippins, CEO of Impactful Wealth Solutions, said, “I think the biggest thing I see in planning for death is the lack of planning: Making decisions, letting someone know when you can’t speak for yourself and when you can act for yourself, what do you want to happen.”
The Rev. Thomas L. Bowen, assistant pastor of the Shiloh Baptist Church in the District, said in the same way couples are offered premarital counseling, pastors need to offer counseling before people leave this earth. “A lot of times we as pastors are the first responders. When death comes, people say, ‘Lord, what am I going to do,’ then they call the preacher and say, ‘what am I going to do.’”
The Rev. Thomas Bowen, assistant pastor at Shiloh Baptist Church in DC, Bowen said ministers are often first responders when someone dies.
The concept of a “good death” might seem like an oxymoron—how could anything about dying be good?—but you only need to watch someone die badly to recognize that dying well is not only a valid goal but also a surprisingly hard one to achieve.
Advances in medical technology have made it possible to treat conditions that even a decade ago would have been considered hopeless. While this is a wonderful thing, the seemingly miraculous power of technology has also encouraged the attitude that it should always be used. As a result, far too often patients or their families indulge the nearly irresistible urge to “Do something!” when faced with an insoluble life-threatening medical problem, even when that something is far more likely to prolongthe dying process than halt it. In this way patients themselves have become complicit in reducing their likelihood of experiencing a good death.
It’s easy to understand why. It’s hard not to try something when there’s something to try, especially when facing one’s imminent demise. But resisting the temptation to pursue futile interventions can be done—as a patient of mine named Michael recently showed me.
When Michael first came to see me in my clinic in April of 2010, however, I had no inkling that he’d show me anything. His tall, athletic frame struck me as more than merely a symbol of his good health—it struck me as evidence against the diagnosis about which he’d come seeking a second opinion, a diagnosis of a disease he desperately wanted me to tell him he didn’t have: amyotrophic lateral sclerosis, or ALS. Yes, he had fasciculations (uncontrollable jerky movements) of his tongue and dysarthria (difficult-to-understand speech). But ALS patients with end-stage symptoms like these weren’t usually able to stride across my exam room and shake my hand with anything close to the kind of power I felt in Michael’s grip.
Only five months later, however, he developed neck weakness and some clumsiness in his left hand. When he next developed weakness in the muscles of his diaphragm, we all became convinced that ALS was indeed what he had. (There is no definitive test for ALS; the diagnosis can only be made from the appearance of its symptoms.) At first, he was angry, a natural response given that the median survival of ALS patients from the time of diagnosis is only three to five years. But soon that anger seemed to fade into acceptance.
At that point he elected to have a feeding tube placed, as his ability to swallow had diminished. Soon after that it became clear that his ability to breathe was also deteriorating. Given that his limb strength remained nearly normal—and with it his ability to function—he elected to have a tracheostomy (a permanent hole surgically placed in his throat) so that he could be on a ventilator at home during the night while he slept. During the day, he was able to breathe without assistance and continued to enjoy what he considered to be a fairly good quality of life. He remained able to drive, and even put on 20 pounds.
When I saw him again in August of 2011, however, his speech had deteriorated further, and he reported having trouble with activities that required fine motor movements, such as writing. When I saw him six months after that, he reported that the muscles of his forearms had shrunk, and I noticed that his grip strength had significantly decreased. He’d begun by then to use the ventilator occasionally during the day.
After September of 2012 he became too weak to be transported to my office, so his partner Al and I began corresponding by text messages and phone calls, managing each subsequent complication (tracheostomy pain, leg spasms, anxiety) together as best we could. Then in November of 2014 Al called to tell me that Michael had become “dead weight” and could no longer move by himself at all. He was now on the ventilator 24 hours a day and requiring more care than Al could provide even with the help of his family. He asked me about placing Michael in a nursing home. I told Al I thought this was a good idea, but that Michael would need to be admitted to the hospital and stay a required three nights before Medicare would pay to have him transferred to a facility able to care for him.
Michael, Al, and I had talked about end-of-life care during Michael’s second clinic visit. As we all recognized Michael was now nearing the end of his life, it was time to return to those discussions, so I went to visit Michael in the intensive care unit the day after he was admitted. I was shocked by what I saw. He was cadaverously thin, his face frozen in an expression of horror, his mouth hanging open in what looked like a scream. But he wasn’t in pain, he told me by spelling out one letter at a time on a piece of cardboard. He simply could no longer create a facial expression other than with his eyes.
Al had told me the night before that Michael wanted to continue living as long as he felt he was “able create value for others.” I asked Michael if that was true. He said it was. But when I asked him if he felt he was still able to do that, he shook his head no (he could still do this well enough to make his meaning plain). Then, painstakingly, he spelled out, “I’m ready for the next step in my journey.” When I asked him if that meant he was ready to die, he nodded yes. I asked him if Al knew he felt that way. He shook his head. When I asked him if he wanted me to tell Al, he nodded again.
After a small pause, I asked him if he was afraid to die. He shook his head. Then I asked him if he was afraid he would suffer. He shook his head again. I nodded and reminded him of the promise I’d made him the first day we all realized he did, in fact, have ALS. “I won’t let you suffer,” I’d said. “No matter what.”
I told him that there were two ways we could allow him to die. We could stop his tube feedings. Without water, I told him, he would die within seven to 10 days. Or we could disconnect his ventilator, which would likely cause his death within a matter of hours. In either case, I emphasized, we would keep him comfortable the entire time.
He said then that he wanted me to disconnect the ventilator. I asked him who he wanted to have present. He wrote that he didn’t want his family there. He wanted Al and me there and a few of his friends. We decided that he would spend the next day saying goodbye to people and that the day after that we would follow his wishes.
So I scheduled him to die on Friday at 10 a.m.
It seemed more than a little bizarre to arrange someone’s death the way I’d arrange a clinic appointment. I found myself wondering just how a person became capable of deciding to die when he wanted so badly to live. Documentaries like Dignitas andHow to Die in Oregon have shown us people with terminal illnesses in physical pain so severe that their desire to live is simply and mercifully snuffed out. And though I could readily believe that profound disability like Michael’s had the same ability to remove the fear of death, I couldn’t actually imagine it. My own love of life is too strong, my fear of death too overpowering, to be able to envision calmly scheduling my own death within a matter of days after deciding life was no longer worth living.
The unfortunate truth, however, is the likelihood that I, or anyone else, will one day have to make a decision like Michael’s has never been greater. Medicine’s greatest victory has paradoxically made it far more likely that we’ll also suffer at the hands of its greatest failure: As we’ve gotten better at preventing the most common cause of death in America—heart disease—we’ve increased our exposure to the risk of death from other diseases that kill far less quickly and that arguably end up causing far more suffering. The older we get, the more likely we are to become ill with cancer, dementia, stroke, and other diseases that preferentially afflict the elderly.
True, we’ve also become better at treating these diseases. And even when we can’t cure them, we can help people live longer with them. But is this necessarily a good thing? Certainly, longer life in general is. But what quality of life are the elderly now able to anticipate? The truth is that we’re far more likely to face a fate like Michael’s—meaning extreme disability near the end of our lives—than we’ve ever been at any time in human history.
I have little doubt that what mattered most to Michael near his end is what will matter most to us all near ours: not just that we remain as free from suffering as possible, but also, and perhaps more importantly, that we maintain our autonomy—the ability to continue to make choices that determine what happens to us.
Autonomy isn’t just about freedom. It’s also about being in control. Or, more accurately, the feeling of being in control. It’s the feeling, not the fact, that has the power to make us feel better—that has the power to make us feel as if an unbearably awful situation isn’t quite as awful as it seems. Feeling in control of even one small aspect of an awful situation, in fact, is often the antidote to the suffering such situations create. It’s well-documented that patients given barbiturate prescriptions to end their lives often don’t use them, but are much relieved at being given the power to choose.
Which is why I told Michael that though I couldn’t prevent him from dying, I could give him the power to choose how and when his death would occur. (Though physician-assisted suicide remains illegal in most states, withdrawal of care is permitted in terminal cases if death will occur as a result of the underlying disease process and not as a result of direct physician intervention.) And in the thanks he expressed—painstakingly, over 20 minutes on his cardboard tablet—about being given back that control, I found the reason my interactions with dying patients have been among the most gratifying of my career. For when a patient’s death becomes impossible to prevent, I’ve never believed that there’s nothing I can do. On the contrary, I find I’m needed to offer what are arguably the three most important things a doctor can: a willingness to discuss the subject of mortality, guidance regarding end-of-life care, and a promise to do everything I can to limit suffering and preserve patient autonomy.
So at 10 a.m. that Friday, I showed up in the intensive care unit to guide Michael, Al, and their close friends through the process of allowing Michael to make the choice to die. I explained that we would turn off the monitors that showed the progress of his vital signs, start an intravenous drip of morphine, and, finally, when he was comfortable, disconnect the ventilator. And after we did these things—as his fellowSGI-USA Nichiren Buddhist friends chanted their mantra Nam-myoho-renge-kyo in the background and his eyelids started to droop under the influence of the morphine—I bent down and whispered to Michael that I understood how much he cared about the value he’d created with his life, and that I would do my best to make certain that his death would create value too. I would tell his story to others, I whispered to him, the story of a man who faced a devastating illness with humor, grace, and dignity, a man who became, it seemed to me, even kinder as he grew sicker, and who wrested control away from his disease at least partially by courageously deciding himself when and how he would “take the next step in his journey.” He’d achieved victory, I told him, in the only way any of us can: by refusing to be defeated in his heart by a disease he couldn’t defeat.
Last week, an Oregon cancer doctor named Kenneth Stevens told a legislative committee in Olympia about a former patient named Jeanette Hall. As he recalled it, Hall had been told she had inoperable cancer and resolved to make use of Oregon’s Death With Dignity Act. “This was very much a settled decision,” Stevens told the state Senate’s Law and Justice Committee.
“I informed her, however, that her cancer was treatable and that her prospects were good,” he continued. As a result, she underwent treatment. The cancer disappeared. “Today, 15 years later, she’s thrilled to be alive,” Stevens said.
It’s for the Jeanette Halls of the world, or rather of Washington state, that Stevens said he was supporting Senate Bill 5919, which would require doctors treating patients who want to avail themselves of our state’s Death With Dignity Act to inform them about possible cures and treatments. The bill, backed by critics of the original act, subsequently passed out of committee.
The bill seemed to come out of the blue, though the issue had recently garnered national attention. In November, 29-year-old Brittany Maynard ended her own life after being diagnosed with terminal brain cancer. She had actually moved to Oregon to take advantage of the country’s first death-with-dignity law and publicized her decision online—an episode that brought physician-assisted death back into the spotlight.
Maynard inspired a “massive national campaign” for death-with-dignity laws across the country, according to the website of Compassion & Choices, the national organization that supports such laws. The group says an “unprecedented 27 states,” including New York and California, are now considering legislative action. Currently only a handful of states allow physician-assisted death, including Washington, where the practice became law in 2009 after a hard-fought initiative campaign.
Yet despite that controversial campaign and the national attention, Washington’s law has quietly gone forward. The number of people using it has steadily gone up, and now surpasses those utilizing Oregon’s law. In 2013, the latest year for which information is available, 173 Washingtonians were prescribed lethal medication and 119 died after taking it, compared to 122 people who received such medication that year in Oregon and 71 who ingested it.
As in Oregon, though, such deaths in Washington represent a tiny fraction of overall mortality. And, in this state at least, there has been no hue and cry over any particular cases. But could it really be, as the bill facing our legislature now implies, that dying patients are not being told about treatments available to them?
In fact, the story of Jeanette Hall’s near-death—now circulating not only in Washington but in various states as ammunition against death-with-dignity bills—does not suggest as much. Speaking by phone from the tiny town of King City, southwest of Portland, Hall says she was told about treatment from the start. “Jeanette, the only way to beat this is through chemotherapy and radiation,” she says she was told by the doctor who first informed her that she had anal cancer that had spread to her lymph nodes.
Though only 55, she didn’t want to go through with the treatment. She explains that she kept thinking about her aunt, a onetime feisty lawyer for the federal government who underwent grueling cancer treatment and died anyway. “She was slumped over, bald. She couldn’t even talk,” Hall says, describing the last time she saw her aunt. Hall didn’t want to turn into that person.
Still, when Hall’s doctor referred her to Stevens, a cancer radiologist, she agreed. “He didn’t give up,” she says of Stevens. It’s not so much that he provided her with new information about treatment as he persuaded her, forcefully, to go through with it. “Don’t you want to see your son get married?” he asked her. “That one sentence hit home,” she recalls.
Though the treatment proved arduous, causing her to lose her hair and making eating difficult for years afterward, she says she remains grateful to Stevens for convincing her to live.
Can you legislate that kind of approach? Should you? What kinds of conversations are going on—or aren’t—around death-with-dignity laws? These are the real questions that Hall’s story raises.
Helene Starks says that Hall’s experience illustrates how complicated conversations around death and dying can be. A professor of bioethics who works for a University of Washington center devoted to palliative care, she talks about the “movies” people play in their heads related to the way they’ve seen others deal with serious illnesses in the past. These movies may date back decades—Hall’s aunt died in the ’70s—and have little bearing on what patients may go through today. “The world of cancer and treatment is changing all the time,” Starks says.
She knows something about this from personal experience. After being diagnosed with breast cancer, she says she was surprised to learn that chemotherapy would not necessarily make her throw up all the time—or, as proved to be the case, at all.
But, she says, we won’t know what people are afraid of if we don’t ask. That conversation is different than a rote “checklist” that goes through the various treatment options. It may start with questions like “Tell me about yourself? What’s important to you? Are there things in the world you feel really strongly that you want to accomplish?”
Doctors will invariably bring the conversation around to treatment, but Starks says there’s a world of difference between dryly laying out the options and saying something like “Look, lady, you should try this, really. I’m going to walk with you every step of the way. I’m not going to abandon you.” She is skeptical as to whether you can legislate this type of conversation, seeing training as a more obvious approach.
Regardless, she says, there are these open questions: “How much do we want to push people, and what do we do when we get an answer we don’t like?” She mentions a friend of hers who has leukemia. Deemed eligible for a bone-marrow transplant, she turned it down—a decision Starks says her friend’s doctor initially couldn’t understand. Her friend decided that the ongoing complications would be too onerous, and she preferred living hard as long as she could and then dying. In this case, Starks says, the doctor did ask why, and came to accept her friend’s decision.
One local institution that has a great deal of experience with conversations about mortality is the Seattle Cancer Care Alliance, which incorporates doctors from the Fred Hutchison Cancer Research Center, UW Medicine, and Seattle Children’s. Anthony Back, an Alliance oncologist who writes about the communication between patients and doctors, says a lot of people ask about the Death With Dignity Act.
“The most important thing about the conversation,” he says, is to ask “why are they thinking about it, why now?” He adds that “a lot of it is helping people think about their values.” What do they want their last days to be like? Are there things they want to wrap up?
If patients are really serious about utilizing the Death With Dignity Act, he and other doctors will refer patients to social workers at the Alliance who help patients understand their next steps. He says that many, however, just want to know there’s a way out if they need it. Even so, he says that discussion can become a doorway into broader—and in his mind more crucial—conversations about mortality.
Most people, he says, are trying to figure out how to have as natural and dignified a death as possible. In medicine right now, he says, “We don’t have a good way to have that conversation.” So many people end up in the emergency room or intensive-care unit, suffering through a lot of invasive treatment in their dying days.
Clearly some people feel strongly about taking control of their death through medication, and these people may indeed lack information—but not necessarily about possible treatment. Unlike at the Seattle Cancer Care Alliance, a number of medical facilities around the state—particularly the growing number affiliated with the Catholic Church—do not help patients utilize the Death With Dignity Act.
The law requires a patient to have two doctors fill out forms for the state Department of Health certifying that the patient is terminally ill. “It’s difficult to find providers in certain parts of Washington,” says Robb Miller, executive director of Compassion & Choices of Washington, citing southwest Washington, Bellingham, and Spokane.
He also points to something that happened at Catholic-affiliated Providence Hospice & Home Care of Snohomish County early last year. According to a complaint subsequently filed by a hospice nurse with the health department, a patient with brain cancer “made repeated requests for alternatives to end his life.” Neither his physician nor “numerous hospice clinicians” would provide any information or referrals, according to the complaint, which added that Providence nurses and social workers believed that if they discussed the Death With Dignity Act, they would be fired.
So the patient took matters into his own hands. He got into his bathtub and shot himself.
Providence spokesperson Mary Beth Walker calls the death “tragic,” but, as of press time, says she has little information about the details of the event. She says Providence “absolutely respects that patients have a right to ask” about the Death with Dignity Act. But the organization’s policy, forwarded to Seattle Weekly, says that it will not “participate in any way in assisted suicide.” And that’s likely to stand. The DOH, finding no wrongdoing, concluded that facilities are not required to provide information about the Act.