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.
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.
Robert Gutenstein of Ridgewood in his bedroom, which he shared with his wife, Ellen, who died nearly a year ago after battling cancer.
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!
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.
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!
Diane Rehm “brings a level of reason and sanity to this discussion that is severely lacking when you look at the opponents of death with dignity,” said Howard Ball, a University of Vermont political scientist. (Matt McClain/The Washington Post)
Diane Rehm and her husband John had a pact: When the time came, they would help each other die.
John’s time came last year. He could not use his hands. He could not feed himself or bathe himself or even use the toilet. Parkinson’s had ravaged his body and exhausted his desire to live.
“I am ready to die,” he told his Maryland doctor. “Will you help me?”
The doctor said no, that assisting suicide is illegal in Maryland. Diane remembers him specifically warning her, because she is so well known as an NPR talk show host, not to help. No medication. No pillow over his head. John had only one option, the doctor said: Stop eating, stop drinking.
So that’s what he did. Ten days later, he died.
For Rehm, the inability of the dying to get legal medical help to end their lives has been a recurring topic on her show. But her husband’s slow death was a devastating episode that helped compel her to enter the contentious right-to-die debate.
“I feel the way that John had to die was just totally inexcusable,” Rehm said in a long interview in her office. “It was not right.”
Diane Rehm and her late husband, John Rehm, wrote a book about their marriage. John died last year after suffering from Parkinson’s disease. (Matt McClain/The Washington Post)
More than 20 years after Jack Kevorkian jolted America with his assisted-suicide machine, Rehm is becoming one of the country’s most prominent figures in the right-to-die debate. And she’s doing so just as proponents are trying to position the issue as the country’s next big social fight, comparing it to abortion and gay marriage. The move puts Rehm in an ethically tricky but influential spot with her 2.6 million devoted and politically active listeners.
Now 78 and pondering how to manage her own death, Rehm is working with Compassion & Choices, an end-of-life organization run by Barbara Coombs Lee, a key figure in Oregon’s passage of an assisted-suicide law and a previous guest on the show. Rehm will appear on the cover of the group’s magazine this month, and she is telling John’s story at a series of small fundraising dinners with wealthy donors financing the right-to-die campaign.
If asked, she said she would testify before Congress.
Rehm’s effort comes less than a year after Brittany Maynard, a 29-year-old woman suffering from terminal brain cancer, moved to Oregon to legally end her life, giving the issue a new spin. That she was young and beautiful helped proponents broaden their argument, making the case that it is a civil right, not just an issue for graying Baby Boomers.
Brittany Maynard was 29 when she died in Oregon last year. She had brain cancer and moved to Oregon because of the state’s death with dignity law. (AP)
The Maynard case prompted a surge of activity among state lawmakers pursuing so-called death-with-dignity laws, including in Maryland, New York, Florida, Kansas, Wisconsin and the District. Progressive politicians and voters say the country is ready for the conversation.
“Kevorkian was before his time,” Rehm said. “He was too early. The country wasn’t ready.”
Public opinion on the issue depends on how it is described, according toGallup, which has found strong support for doctors helping patients end their lives “by some painless means,” but a far slimmer majority in favor “assisting the patient to commit suicide.” Not surprisingly, groups such as Compassion & Choices studiously avoid using the word suicide.
Laws granting the right to die exist in only three states — Oregon, Washington and Vermont. New legislation faces staunch opposition from religious groups and the medical establishment.
In Massachusetts and other states where legislation has failed, proponents faced well organized public campaigns from the Catholic church, whose American bishops call suicide a “grave offense against love of self, one that also breaks the bonds of love and solidarity with family, friends, and God.”
Pushback from the American Medical Association has been equally fierce, with the organization saying that “physician-assisted suicide is fundamentally incompatible with the physician’s role as healer, would be difficult or impossible to control, and would pose serious societal risks.”
Both sides of the debate see Rehm’s entry into the debate as an important development.
“She brings gravitas, she brings her experience and she brings a level of reason and sanity to this discussion that is severely lacking when you look at the opponents of death with dignity,” said Howard Ball, a University of Vermont political scientist and author of “At Liberty to Die: The Battle for Death with Dignity in America.”
Ira Byock, a palliative care physician and vehement opponent of assisted death, has argued against the movement on Rehm’s show. Though he credits her for having him on, he said her story and influence distracts from the conversation the country should be having about improving end-of-life care.
“It sucks all of the oxygen out of the room,” he said.
‘I don’t want comfort’
They met in 1958. John was a lawyer at the State Department. Diane was a secretary.
“Physically, she was a knockout,” John wrote in a book they published about their marriage. But there was more. “It became clear, for example, that Diane had a fierce intellectual curiosity.” She never went to college, but had a copy of “Brothers Karamazov” on her desk.
Diane recalled his crew cut, his physique, his own intellectual curiosity.
“We loved taking long drives into the countryside,” Diane wrote, “and then going out for pizza and wine at Luigi’s, talking about our dreams, our fantasies, our attraction to each other.”
They wed and had two children, but marriage wasn’t as easy as falling in love. John was a loner, a workaholic. Diane was more outgoing, centered on family. They disagreed about so many things, nearly breaking up.
One thing they agreed on: Death.
“We had both promised each other we would help each other when the time came,” Diane said, “if there was some incurable or inoperable disease.”
The end of John’s battle with Parkinson’s last June was that moment. They had a meeting with his doctor. Their daughter, Jennifer Rehm, a physician in the Boston area, listened on the phone. She said, “Dad, they can make you comfortable.” Her father replied: “I don’t want comfort.”
The doctor made it clear he couldn’t help, but offered the self-starvation option, which the Supreme Court has ruled legal. John, living in an assisted-living community, didn’t immediately make the decision. The next day, Diane went to visit.
“I have not had anything to eat or drink,” he told her. “I have decided to go through with this.”
“Are you really sure?” Diane asked.
“Absolutely,” she said he told her. “I don’t want this.”
Diane stayed by his bedside. A couple days later, he went to sleep, aided by medication to alleviate pain. She read to him, held his hand, and she prayed.
“I prayed and prayed and prayed to God, asking that John not be suffering in any way as his life was ebbing,” she said.
Like his wife, John was Episcopalian, a church that has passed a resolution against assisted suicide and active euthanasia. She didn’t think God minded very much.
“I believe,” she said, “there is total acceptance in heaven for John’s decision to leave behind this earthly life.”
As John edged closer to death and the end of their 54-year marriage, a priest friend came to visit. Diane got a glass of red wine for a service of Holy Communion next to her husband’s bed. She put a drop of red wine on his lips. The priest performed last rites.
She spent the night with him, and in the morning she went home for a quick shower. Then she received a call — come fast, he’s slipping away. She missed his death by 20 minutes. She is still angry about that. If he could have planned his death, she and his family would have been there.
“That’s all I keep thinking about,” she said. “Why can’t we make this more peaceful and humane?”
John donated his body to George Washington Medical School. At his memorial service, some 400 people packed St. Patrick’s Episcopal Church — journalists, academics, policy makers and religious figures, including Marianne Budde, bishop of the Washington Episcopal Diocese.
Diane returned to work not long after. She told her producers she wanted to do another show on assisted dying.
It wasn’t until the last few minutes that Rehm told listeners what her husband had done: “John took the extraordinarily courageous route of saying, ‘I will no longer drink. I will no longer eat.’ And he died in 10 days.”
Richard from Florida called in. “You have my deepest sympathies and empathies with the loss of your husband,” he said. And then: “I’ve got to get to the state that gives me the choice.”
Rehm said she knows that as a journalist, she must be careful.
Diane Rehm, right, during “The Diane Rehm Show” at WAMU-FM in Washington.. (Matt McClain/The Washington Post)
“As strongly as I feel, I don’t want to use the program to proselytize my feelings,” she said. “But I do want to have more and more discussion about it because I feel it’s so important.”
Sandra Pinkard, Rehm’s producer, said she appeals to listeners, in part, because she is so open about herself. She and John discussed their marriage on the air. She detailed his struggles with Parkinson’s.
Rehm came back to the assisted death topic in late October after Brittany Maynard announced plans to end her life.
Byock joined her on the show, knowing, he said, that “on this issue, she is clearly an advocate.” Though she didn’t mention her husband, he said he had to be “very assertive” to counter the focus on Maynard’s undeniably dramatic case.
Still, he said he would go back on the program “in a heartbeat” because it’s becoming a forum for the debate.
“It’s people like her listeners that I want to talk to,” he said. “I am sincerely grateful for giving me access to her listeners.”
Her last moments
They still talk, Diane and John.
“I miss you so much,” she’ll say out loud, alone in her apartment. When President Obama awarded her the National Humanities Medal last year, she told John, “It just breaks my heart you weren’t there.”
She could hear his voice: “Don’t worry, I’m there.”
Wherever he is, Rehm has plans to join him. But she doesn’t intend to die the way he did. Shortly after John’s funeral, Rehm made an appointment with her doctor to talk about her death.
“You have to promise,” Rehm told the doctor, “that you’ll help me.”
The doctor, Rehm said, was “receptive” to the request. “I think over a period of time he or she would provide me, if I were really sick, with the necessary means,” she said.
Rehm can’t fathom being in the “position where someone has to take care of me. God forbid I should have a stroke, I want to be left at home so I can manage to end my own life somehow. That’s how strongly I believe.”
Like John, she is donating her body to GW medical school. Once students finish learning from her remains, her family will take her ashes to the family’s farm in Pennsylvania, spreading them near the same hickory tree that shades John’s ashes.
Rehm can vividly see her last moments. She is in her bed, at her home, unafraid.
“My family, my dearest friends would be with me holding my hand,” she said. “I would have them all around me. And I would go to sleep.”
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!
