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.
Tumors had disfigured AshLeigh McHale’s features and spread to her organs. A year ago, AshLeigh, 17, flew from her home in Catoosa, Okla., to the National Institutes of Health in Bethesda, Md., with a thread-thin hope of slowing her melanoma.
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.”
AshLeigh McHale, center, gave her family detailed instructions about her final wishes, including those concerning her funeral.
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.”
Karly Koch, 20, worshiping in Muncie, Ind. She has a rare genetic immune disorder, and has written about her end-of-life plans.
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.
Karly Koch with her mother, Tammy.
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.”
Karly Koch with her family in Indiana.
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.”
Ms. Koch on her way to have blood drawn.
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.”
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.
Drew Bardana
“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.
Many of them will go to great lengths — even subterfuge — to avoid it.
Sure, nobody likes to deliver bad news. But shouldn’t physicians have mastered that?
In a recent study of doctors whose patients were dying, only 11 percent said they personally spoke with their patients about the possibility of death.
My husband, Mark, who died at 58, had an inoperable brain tumor. Yet at no time did any doctor look him in the eye and tell him he was going to die. They did tell him, at least initially, he could probably live another five years.
Eventually, doctors spouted euphemisms that even I, a former medical reporter, couldn’t decipher. Or they hinted, saying, “Treatment isn’t going our way,” without ruling out the possibility it might go “our way.” Finally, toward the end, doctors said, “Soon consider hospice.”
Doctors say it can be hard to predict the timing of death. Or that they don’t want to squash hope in a patient and family. Or that they don’t have time for the kind of conversation that must occur when they forecast death.
When a doctor actually told me my husband was dying, I asked her to tell Mark, thinking he might have questions I would be unable to answer. She scuttled off to his hospital bedside and returned so quickly I knew no conversation had taken place. He was sleeping, she said.
Instead, I told Mark.
I learned my husband was “failing to thrive” when I was asked to attend a meeting in a conference room at the University of California, Los Angeles’ intensive care unit with five doctors. I had briefly met one doctor. I didn’t know the others. The topic of the meeting, I was informed, was the treatment plan for Mark.
Weeks earlier, Mark had been diagnosed with the tumor, which could be treated with radiation and chemotherapy. Back then, the talk was about winning more time for Mark.
At the conference room meeting, no one actually used the word “dying.” They said they could no longer help him. One doctor advised hospice. I felt like the air had been knocked out of my lungs. No one had hinted previously that my husband’s situation was so dire. Instead, we had been told about people who managed to live years with a brain tumor.
I had seen Mark’s UCLA oncologist just two days earlier. He had been optimistic, offering several treatment suggestions, cheerily informing me he was heading off on vacation and would see us on his return.
I called our family doctor.
“Your oncologist has not leveled with you,” she said.
Those are words no one should have to hear.
I understand it’s not easy to tell someone he’s dying. When I told my husband, he said:
“That was not the deal.”
He was not ready to die. Before his diagnosis, my husband had regular physicals showing he was healthy. He ran his own public relations business and delighted in his four children.
What happened, we wondered. Why didn’t we know Mark was dying until white-coated strangers sitting in a conference room told me? Was it our obstinate desire to cling to every shred of hope in spite of evidence to the contrary?
I don’t think so.
In recent decades, technology has advanced so significantly that the art of diagnosis has changed. Doctors no longer count on in-depth conversations with patients eliciting intimate details about symptoms. Instead, they consult a battery of test results and scans.
And electronic medical records have meant that doctors are often typing their notes as they talk with patients. “The technology has become incredibly complicated,” said one oncologist. “Intangible things get lost, like talking to patients.”
The crunch between technology and communication is most apparent at the end of life. It is reflected, in part, by how we train doctors. In four years of medical school, the average amount of instruction on death and dying is 17 hours.
In 2013, only three of 49 accredited schools of public health offered a course on end-of-life care. Students do not learn more about dying, one report says, because death is a medical failure.
In effect, we have created a medical system that treats death as a separate event having nothing to do with life.
In my husband’s case, we resigned ourselves to death. Unlike our doctors, we talked and talked about it. On my daughter’s first day of fifth grade, my husband entered hospice.
I began reading to Mark about death, mostly essays and poetry. We speculated about dying, what it would be like.
Initially, we thought hospice staff could give guidance. But when my husband rolled his eyes at one social worker, I realized we would tackle this as we had much else in our marriage: winging it and together.
In my husband’s final weeks of life, he wanted a hamburger and fries every day. He spoke less and less. Yet he was still the wordsmith. When I bumbled at pronouncing the word “schadenfreude” (glee at another’s misfortune), he raised one eyebrow and corrected me.
One afternoon, he ate only a bite of his burger, then asked me whether it was possible to have hamburger juice. I began breaking his pills into smaller pieces.
The next morning, I found my husband smiling at the ceiling and asked what he was smiling at. “Death,” he said. I found it oddly comforting.
Mark died three days later.
Zamichow is a Los Angeles journalist and former Los Angeles Times staff writer who wrote this for the newspaper. Complete Article HERE!
If you make a choice to hasten your own death, it’s actually pretty simple: don’t eat or drink for a week. But if you have Alzheimer’s disease, acting on even that straightforward choice can become ethically and legally fraught.
But choosing an end game is all but impossible if you’re headed toward dementia and you wait too long. Say you issue instructions, while still competent, to stop eating and drinking when you reach the point beyond which you wouldn’t want to live. Once you reach that point — when you can’t recognize your children, say, or when you need diapers, or can’t feed yourself, or whatever your own personal definition of intolerable might be — it might already be too late; you are no longer on your own.
If you’re to stop eating and drinking, you can do so only if other people step in, either by actively withholding food from you or by reminding you that while you might feel hungry or thirsty, you had once resolved that you wouldn’t want to keep living like this anymore.
And once other people are involved, it can get tricky. Caregivers might think of spoon-feeding as just basic personal care, and they might resist if they’re asked to stop doing it — especially if the patient indicates hunger somehow, like by opening her mouth when she’s fed.
Conflicts between caregivers and the patient’s previously stated wishes can end up in court, as with the case of Margaret Bentley, which goes before the Court of Appeals in British Columbia on Wednesday.
Bentley, a former registered nurse, decided years ago that she wanted to stop eating if she ever became completely disabled. But she has now sunk so far into dementia that she needs other people to help her carry out her own wishes. And while her family wants her to be allowed to die, the administrators of her nursing home do not.
Back in 1991, Bentley wrote and signed a living will that said that if she were to suffer “extreme mental or physical disability” with no expectation of recovery, she wanted no heroic measures or resuscitation, nor did she want to be fed “nourishment or liquids,” even if that meant she would die.
Eight years later, at the age of 68, Bentley was diagnosed with Alzheimer’s disease. She lived at home with her husband John, as well as a live-in caregiver, until 2004, when she needed to be institutionalized.
For a while, according to her daughter, Katherine Hammond, the family hoped she would just die peacefully in her sleep. But as the years dragged on and Bentley got progressively more demented, her husband and daughter finally decided to put her living will into action.
By this time it was 2011, and Bentley was living at a second nursing home, Maplewood House, in Abbottsford, about an hour east of Vancouver. Aides had to do everything for her, including diapering, moving, lifting and feeding her. So the decision to stop giving her food and water involved the aides as well as the Fraser Health Authority, which administers Maplewood House.
Someone — Hammond is not sure exactly who — resisted the idea of denying Bentley the pureed food and gelatin-thickened liquids that were her standard diet, especially because she seemed to want to eat, opening her mouth whenever they brought a spoon to her lips.
That’s just a reflex, insisted Hammond, who made a short video showing that Bentley opened her mouth even when the spoon was empty. “There she goes again,” the daughter says on the video.
In early 2013, a Superior Court judge ruled that it was more than a reflex, it was an expression of Bentley’s desire to be fed; he granted the nursing home permission to continue to spoon-feed her. Bentley’s family appealed, resulting in Wednesday’s court hearing.
Death brought about by the cessation of eating and drinking might sound scary in prospect, but it’s said to be relatively painless if done correctly. Most of the discomfort associated with it, according to a pamphlet issued by the advocacy group Compassion & Choices, comes from trying to do it in increments. Even a tiny amount of food or water “triggers cramps as the body craves more fuel,” the group writes. “Eliminating all food and fluid actually prevents this from happening.”
They recommend lip balm and oral spray if the mouth gets dry, rather than sips of water that can introduce just enough fluid into the system to make the process harder. And they counsel patience. It takes about six days, on average, for someone who stops eating and drinking to slip into a coma, and anywhere from one to three weeks to die.
Scholars have been tangling for years with the moral quandary of how to treat people like Margaret Bentley, who indicate, while cognitively intact, that they want to kill themselves when they reach the final stages of dementia. (NPR earlier covered the story of Sandy Bem, a woman with Alzheimer’s who took matters into her own hands before that final stage.)
In a recent issue of the Hastings Center Report, a prominent journal of bioethics, experts were asked to consider the story of the fictitious Mrs. F., a 75-year-old with advanced Alzheimer’s living at home with her husband and a rotating cast of caregivers. Early in the disease process, Mrs. F. had been “adamant” about not wanting to end up profoundly demented and dependent. She told her husband that when she could no longer recognize him or their two children, she wanted to stop all food and fluid until she died.
Mrs. F.’s cognitive function “was beginning to wax and wane,” according to the description in the journal, when she finally decided it was time to stop eating. But occasionally she would forget her resolve — she was, after all, suffering from a disease characterized by profound memory loss — and would ask for food. When she did, her family reminded her of her previous decision.
But they were torn, as were the aides caring for her. Which Mrs. F. should they listen to: the one from before, who above all else did not want to become a mindless patient in a nursing home? Or the one from right now, who was hungry?
That’s the problem, really; part of what happens in a dementing illness is that the essential nature of the individual shifts.
“Mrs. F.’s husband was, to all appearances, acting out of goodwill in an attempt to honor his wife’s previously expressed wishes,” noted Timothy W. Kirk, an assistant professor of philosophy at the City University of New York, in his commentary on the case. “Doing so in a manner that conflicted with her current wishes, however, was a distortion of respecting her autonomy.” Kirk’s bottom line: If this Mrs. F., the one with the new, simpler identity, asks for food, she should get it.
As hard as it is to resolve moral quandaries like these, one thing is clear: they’ll be raised again and again, as the population ages and cases of late-life dementia soar. Complete Article HERE!
In a new book, “The Conversation”, physician Angelo E. Volandes argues that the the U.S. healthcare system is failing patients in their final acts: Americans are botching death.
The problem is that hospitals and doctors are pre-programmed to “do everything” for dying patients – that is, attempt every last measure to prolong life, even if its probably futile, painful and unwanted.
To a certain kind of Washington policy wonk, the trouble with “doing everything” is that it causes soaring medical costs and billion-dollar financial woes.
But those are not the concerns of Volandes, a Harvard researcher who practices as a hospitalist. Instead, he sees the extreme end-of-life measures as a tragedy for patients – a tragedy that could be prevented if only doctors asked patients what they want. The patients are the ones who must bid farewell to life being poked and prodded and filled with tubes by strangers in the hospital.
The tone of the book, which is told through a series of patient vignettes, is polite. In a recent conversation, Volandes sounds considerably angrier about the failings of the system.
Peter Whoriskey: To get patients like her to realize what “doing everything” means, you started taking patients on tours of the intensive care unit to see what dying in the hospital looks like – the tubes and so on. When that became impractical – it was against hospital rules – you even made a video.
Angelo E. Volandes: I want patients to understand what “doing everything” means. I’ve since heard from other doctors who’ve done the same thing. People just don’t know what it’s like in there. As doctors, we sometimes say to one another, “Would anyone want this? We are torturing these patients.” But patients don’t know.
I wrote the book because… I want people to be outraged. I want people to understand what’s happening behind those hospital doors. This is not a patient-centered healthcare system.
Whoriskey: You talk in the book about being, early in your career, one of those doctors who couldn’t squarely talk to patients about death, and in the case of one brain tumor patient, being unable to say directly that she had terminal cancer and was dying.
Volandes: We weren’t trained to talk to patients. I was actually sweating. I’ll never forget her look. She was a highly educated professor and she had this blank stare. It will stay with me the rest of my life.
Whoriskey: One of the patients you talk about, as a warning, is an old coal miner who despite being very near death was saddled with “eight plastic intrusions”: a tube into his lungs, two intravenous lines, an arterial line, a stomach tube, a tube in his heart to drain fluid, one for his bladder and one for his rectum. How often do patients die like that – is it really that common when they are about to die anyway?
Volandes: He’s not unusual. If we haven’t had a conversation with a patient about what they want, it’s automatically a full court press. All of those intrusions are commonly used. None of them is extraordinary.
Whoriskey: What is most common measure applied to patients who are near death that ought to be reconsidered?
Volandes: Feeding tubes. That is probably the number one kind of avoidable care. We know from many studies on patients with advanced dementia, feeding tubes are not helpful. Yet what do we see in nursing homes? Patients tethered to feeding tubes. The alternative is hand-feeding.
Whoriskey: The solution you propose is simple: Have a conversation. Ask patients what they want. Is it really just the lack of conversation that has most of us dying in hospitals and nursing homes when we really prefer to die at home?
Volandes: That’s what I see as a practitioner. I know that when we do slow down to talk to patients, people tend to choose the care that is right for them. Most of the time today we’re not even stopping to have the conversation.
Yes, the default is to do everything because that’s what we as doctors are trained to do and that’s what hospitals are there for, and there are financial incentives behind that. But if we slow down and talk to patients, it can work.
