Prolonging Life – Page 5 – The Amateur's Guide To Death & Dying

March 30, 2015March 30, 2015

Videos On End-Of-Life Choices Ease Tough Conversation

By Ina Jaffe

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. — 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.

Complete Article HERE!

March 29, 2015

Teenagers Face Early Death, on Their Terms

By JAN HOFFMAN

One morning a social worker stopped by her hospital room. They began a conversation that would be inconceivable to most teenagers: If death approached and AshLeigh could no longer speak, what would she want those who surrounded her to know?

The social worker showed AshLeigh a new planning guide designed to help critically ill young patients express their preferences for their final days — and afterward.

If visitors arrived when AshLeigh was asleep, did she want to be woken? If they started crying, should they step outside or talk about their feelings with her?

What about life support? Funeral details? Who should inherit her computer? Or Bandit, her dachshund?

AshLeigh grabbed her blue and hot-pink pens, and began scribbling furiously.

When she died in July, she was at home as she had requested. Per her instructions, she was laid out for the funeral in her favorite jeans, cowgirl boots and the white shirt she had gotten for Christmas. Later, the family dined, as AshLeigh had directed, on steak fajitas and corn on the cob.

“I don’t know what I would have done if I’d had to make these decisions during our extreme grief,” said her mother, Ronda McHale. “But she did it all for me. Even though she got to where she couldn’t speak, AshLeigh had her say.”

A national push to have end-of-life discussions before a patient is too sick to participate has focused largely on older adults. When patients are under 18 and do not have legal decision-making authority, doctors have traditionally asked anguished parents to make advanced-care choices on their behalf.

More recently, providers have begun approaching teenagers and young adults directly, giving them a voice in these difficult decisions, though parents retain legal authority for underage patients.

“Adolescents are competent enough to discuss their end-of-life preferences,” said Pamela S. Hinds, a contributor on pediatrics for “Dying in America,” a 2014 report by the nonprofit Institute of Medicine. “Studies show they prefer to be involved and have not been harmed by any such involvement.”

There are no firm estimates of the number of young patients facing life-threatening diseases at any given time. Cancer, heart disease and congenital deformities together account for an estimated 11 percent of deaths among adolescents, about 1,700 per year. And many thousands live with the uncertainty of grave illness.

“If you are one of the children for whom this matters, or one of their parents, this is a huge opportunity,” Dr. Chris Feudtner, a pediatric palliative care physician and ethicist at the Children’s Hospital of Philadelphia, said of these conversations.

But shifting from hushed talks with parents to conversations that include young patients has met some resistance. Many doctors lack training about how to raise these topics with teenagers. Until recently, most clinical teams believed that adolescents would not understand the implications of end-of-life planning and that they might be psychologically harmed by such talk.

Sometimes when providers do make the attempt, parents or patients may abruptly change the subject, fearful that by joining in, they are signaling that they have abandoned hope.

Yet research shows that avoiding these talks exacerbates the teenage patient’s fear and sense of isolation. In a 2012 survey examining end-of-life attitudes among adolescent patients with H.I.V., 56 percent said that not being able to discuss their preferences was “a fate worse than death.” In a 2013 study, adolescents and parents described such directed family talks as emotionally healing.

Teenage patients can guide, even lead, their medical care, Dr. Feudtner said. But more important, including them in the discussions acknowledges a terrible fact that patient and family members struggle to keep from each other: the likelihood of death.

“Then people can be together, as opposed to alone,” Dr. Feudtner said. The teenage patient feels free to address intimate topics, including “the scariest aspects of the human condition — mortality and pain — but also love, friendship and connection.”

Creating a Legacy

Karly Koch, a college student from Muncie, Ind., has been treated for many serious illnesses, including Stage 4 lymphoma, all related to a rare genetic immune disorder. Her older sister, Kelsey, died of the condition at 22.

Last spring, Karly, then 19, developed congestive heart failure. Her renal arteries were 90 percent blocked. As Karly lay in intensive care at the National Institutes of Health, a psychotherapist who had worked with the family for years approached her mother, Tammy, with the new planning guide.

“Do we talk about dying?” Mrs. Koch recalled wondering. “Maybe Karly hasn’t thought about it — do we put it in her head?”

“We had already buried a child and had to guess what she wanted,” she continued. “So we wanted Karly to have a voice.”

Karly’s reaction? “She said it wasn’t like we were telling her something she didn’t already know,” Mrs. Koch said.

The guide used by Karly Koch and AshLeigh McHale is called “Voicing My Choices.” While there are end-of-life workbooks for young children and their parents, as well as planning guides for older adults, this is the first guide created for — and largely by — adolescent and young adult patients.

The intention was to create a way for them “to make choices about what nurtures, protects and affirms their remaining life and how they wish to be remembered,” said Lori Wiener, a social worker and principal investigator on the research that led to the planning guide.

In the two years since its introduction, more than 20,000 copies have been ordered by families and more than 70 medical centers from Aging With Dignity, the nonprofit that publishes it. “Voicing My Choices” has also been translated into Spanish, Italian, French and Slovak.

In straightforward language, the guide offers young patients check boxes for medical decisions like pain management. Another section asks about comfort. Favorite foods? Music? When visitors arrive, one option could be: “Please dress me, comb my hair and do whatever else is needed to help make me look like myself.”

What gives you strength or joy, the guide asks. What do you wish to be forgiven for? And who do you wish to forgive?

“These are the things that are important to know about me,” one list begins. AshLeigh, who would dance and sing down the aisles of Walmart, wrote: “Fun-loving, courageous, smart, pretty wild and crazy.”

Devastating disease can leave anyone feeling powerless, so a means to assert some control can be therapeutic. For adolescents, who are exploring and defining identity, Dr. Feudtner said, “you can express who you are, what you are and what you care about.”

By offering young patients opportunities to write farewell letters, donate their bodies to research and create rituals for remembering them, the planning guide allays one of their greatest fears: that they are too young to leave a meaningful legacy.

And so the ability to do it can galvanize them. Lauren Weller Sidorowicz received a diagnosis of metastatic bone cancer at age 18. Determined and outspoken, she joined a focus group of young patients at the N.I.H. whose opinions led to the creation of the planning guide. Days before she died in 2011 at age 26, Ms. Sidorowicz paged Dr. Wiener, frantic to include a final thought in a farewell letter.

To her grandmother, she wrote, “I hope there is potato salad in Heaven as good as yours.”

There are no standards for when and how to introduce a critically ill teenager to end-of-life planning; there are only intuition and experience. Many pediatric cancers have favorable prognoses, Dr. Feudtner said, and raising the topic prematurely may provoke anxiety and fear.

More often, though, doctors postpone the discussion too long, until the patient is too sick to take part. Dr. Maryland Pao, a psychiatrist at the National Institute of Mental Health who helped design the guide, recalled the despair of a mother whose dying son could no longer speak.

“I have no idea what he wants,” the woman told her. “He’s 17, but we never communicated about this.”

Dr. Wiener believes preparation should be done soon after diagnosis, but when the patient is stable. Exploratory talks, she said, become steppingstones, each readying the patient for the next one.

Still, providers encounter problems. “If the family doesn’t want to do it, you’re stuck,” Dr. Pao said. “There’s a lot of magical thinking — that if you talk about it, you’ll help them die.”

And sometimes teenagers themselves put up obstacles to having frank family discussions. Some young patients, for example, did not want Dr. Pao to tell their parents that they were ready to stop treatment. Rather than say as much to their heartbroken relatives, some will pour out their feelings on social media.

Erin Boyle, 25, had been treated for autoimmune disorders since she was 4. Last August, as she prepared for a stem cell transplant for leukemia, N.I.H. researchers asked whether she felt comfortable looking through “Voicing My Choices.”

Ms. Boyle completed most of the guide. At that time, she recalled, “the decisions felt theoretical rather than imminent.”

But shortly after the transplant, she relapsed.

“It was comforting to get my wishes down on paper and free myself to live without worrying about the details of dying,” she said recently.

She died on Wednesday. Her body is going to the N.I.H. for a research autopsy, as she wished, her mother, Ellen, said.

For doctors, end-of-life discussions with adolescent patients can be wrenching. “You have to be self-aware and reflect on your own experiences with grief and loss,” Dr. Pao said. “It’s hard not to be anxious if you have children. You feel helpless. It makes you face your own mortality.”

On July 25, Karly Koch had an experimental bone marrow transplant. Her family calls that date her “re-birthday.” With 12 medications a day and a surgical mask, she is out and about in Muncie.

Karly takes classes to become a physical therapy assistant. She is a youth leader at her church, where her boyfriend is also a member. She delights in “normal people” activities.

Her parents keep Karly’s copy of “Voicing My Choices” in their bedroom cabinet. “It isn’t gloomy to go through,” Karly said. “It’s kind of fun to get your feelings out there.”

“Now, looking at it,” she continued, “I think I’d like to add some things.”

Complete Article HERE!

February 16, 2015

NPR host Diane Rehm emerges as key force in the right-to-die debate

By Michael S. Rosenwald

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.”

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.

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.

“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.”

Complete Article HERE!

February 11, 2015

If You Have Dementia, Can You Hasten Death As You Wished?

By Robin Marantz Henig

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!

January 26, 2015

Exit strategy: ‘They want a promise from their doctor, that when they don’t want to live, they can stop living’

by Sharon Kirkey

The last of a three-part series examines living while dying: Exit strategies.

On a warm summer day in 2011, Alain Berard learned he would die from a disease that will eventually take away his ability to move, swallow or breathe on his own, before it kills him.

It took 11 months for doctors to understand what was going wrong inside his body. Once an avid runner, Alain began experiencing cramping and fatigue in his legs. He thought he was over-training.

Then he started having trouble swallowing.

His heart, blood and thyroid gland were checked before a specialist saw the tremors and quivering at the back of his tongue.

A lumbar puncture and brain scans were ordered, to rule out multiple sclerosis and other neurological disorders, and as each test came back negative, Mr. Berard’s panic grew. He remembered the pictures on TV only months earlier of former Montreal Alouettes star Tony Proudfoot, who died of amyotrophic lateral sclerosis, or ALS — Lou Gehrig’s disease, an illness that normally ends in death within two to five years.

“I would have taken any other diagnosis before ALS,” Mr. Berard, now 48, says.

ALS is one of the most devastating diseases known to man, an incurable illness that attacks the nerve cells in the brain. But ALS is also a disease apart, because it allows patients to create what neurologist Dr. Angela Genge calls an “exit strategy” — and we can all learn from them how to better prepare for our own deaths.

“We tend to live our lives as if life is infinite,” says Dr. Genge, Mr. Berard’s doctor and a director of the ALS clinic at the Montreal Neurological Institute and Hospital.

“These patients go from that mindset to, ‘I’m dying, and I’m going to die a death in which I become disabled.’ This disease becomes extremely scary.”

But then two things change: most people recover from the diagnosis, psychologically, Dr. Genge says. “They know what is going to happen to them, and then each signpost along the way is another step, another conversation,” she said. What is it you need to do before you die? How much do you want us to do to keep you alive?

“It is very common that they want a promise from their doctor, that when they don’t want to live, they can stop living. They can die. They want control over what will happen.”

Mr. Berard is now three-and-a-half years into his dreaded diagnosis. He looks incongruous, sitting in his wheelchair. The pieces don’t fit: He is six feet, three inches tall, with broad shoulders and chest. Yet he is speaking frankly about whether he would ever accept a feeding tube in his stomach, or a tracheotomy — a surgical incision in his windpipe so that a ventilator could pump air into his lungs.

His wife, Dominique, a schoolteacher, has been taught the Heimlich maneuver and what to do if Mr. Berard suddenly starts choking. She is petite, but strong. She is preparing for the day she will have to take over complete care of her husband, “because I will be like a child, like a baby,” Mr. Berard says.

He doesn’t know yet how much he would be prepared to endure, or, if his condition worsens after Quebec’s “medical aid in dying” law takes effect, whether he would consider asking his doctor to help end his life

“It’s always a debate. What would I want for myself, and for my family?”

As the Supreme Court of Canada weighs lifting the federal prohibition on assisted suicide, in Quebec, the hypothetical will soon become real.

The Quebec law is expected to go into effect at the end of this year. A special commission established to set the ground rules for assisted death will begin work next month.

Some believe assisted suicide is already occurring in far less desperate ways — with the help of doctors.

In 1994, witnesses testifying at a special Senate committee on euthanasia said physician-hastened deaths are happening clandestinely, and that the law, as it now stands, is not being enforced.

“I have spoken with physicians who have been involved directly in the process. I know for a fact that it does occur on a regular basis,” Dr. Michael Wyman, a past president of the Ontario Medical Association said.

Dr. Jeff Blackmer, the Canadian Medical Association’s director of ethics, acknowledged there are anecdotal reports doctor-assisted deaths are occurring in Canada.

“But I think it’s important to note that I have never had a doctor tell me, either in person or online or otherwise, that they have participated in this type of activity. Never once,” Dr. Blackmer said.

Last summer at the Canadian Medical Association’s annual general council meeting in Ottawa, some doctors said dying farm animals are treated more humanely than patients, and that there are times when the most compassionate thing to do is to stop a heart beating.

People with ALS fear two things: dying by choking, or dying by suffocation. Dr. Genge tells her patients: These are not untreatable problems you have to suffer through. “We can manage every one of those symptoms so there is no suffering,” she said.

“The disease itself put you in a certain state. But the only way you die from ALS itself is by respiratory failure, and if you remove that piece by going on a ventilator, then you literally continue until other organs, like the heart, fail,” Dr. Genge said. One patient who died last year had been on a ventilator, at home, for 17 years.

Without ventilation, the prognosis is two to five years.

Mr. Berard understands his disease is following an arc. “I’m pretty close to the edge, where it’s going to fall off. But I do my best not to overexert myself.”

He and Dominique have installed a lift on the ceiling above his bed in a specially renovated room. He has chosen where he will be cremated and buried. “I can go and see where I’m going to be.” He is preparing a Power Point presentation for his funeral — photos of himself with his girls, Noemie, 20, and Charlotte, 17, and videos of his impersonations of Quebec politicians.

“I’m in a wheelchair. This I can cope with,” says Mr. Berard. “But there will be a time that it will be too difficult for me and my family to see me in this condition.”

He supports Quebec’s law that could give people like him a more gentle death, should they choose it.

“I consider it as an option, like a feeding tube, or a tracheostomy. It’s like a treatment for the end of life, when the illness is too difficult to cope with,” he says.

“When you say, you know what? I’ve had enough. I don’t want to do this anymore.”
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January 11, 2015January 12, 2015

Perspective on death from a dying man

Rev. Ted Dotts diagnosed with prostate, bone cancer in September

By Sarah Rafique

The Rev. Ted Dotts and his wife, Betty, make the same drive to Santa Fe, New Mexico, they’ve made dozens of times in the past.

The family stops on a country road. Ted stands outside, listening to the wind as he often enjoys during the road trips. He turns around to look at his children and grandchildren, but they’re already in the car driving away. He’s alone.

Ted wakes up.

He rustles around and realizes it was a dream Still, it is the closest the 80-year-old Lubbock resident has ever been to fearing death.

Dotts fears becoming an ugly, grouchy old man when medication can’t alleviate his physical pain. But he doesn’t fear death.

He knows it’s inevitable.

He has known that ever since he was diagnosed with prostate and bone cancer in September — ever since he decided to opt against curative treatment for the crippling disease, refusing to put the burden of his health on taxpayers.

“My life — I’m richly happy, probably happier now than I’ve ever been, and that lasts through the day most of the time,” said Dotts, pastor emeritus of St. John’s United Methodist Church. “Death is a matter of releasing me from anything that’s less than God … and I get ushered into a new life and then I’m trusted to make whatever is to be made.”

Preparing for death

Two yellow folders are taped on a closet near the entryway of the Dottses’ home.

Betty’s folder is simple: An out-of-hospital “Do Not Resuscitate” order in case she dies at their apartment at the Carillon LifeCare Community in Lubbock.

Ted’s orders, written in all caps, are more detailed: No CPR. No hospital. No EMS-ambulance. No ER. No antibiotics. No tracheotomy. No breathing assistance devices.

While the doctor’s orders stop there, it’s followed by 12 phone numbers for Betty to call when her husband inevitably dies.

The couple has talked about death for years — not every day, but enough to understand each other’s end-of-life wishes. But after Ted’s cancer diagnosis, death became more imminent.

“(When I found out,) I had a feeling of the heart just sinking, like the bottom had dropped out,” Betty said. “But I also, in my thinking, knew ‘Alright, this is a time to prepare yourself.’ ”

She is not only preparing herself for the emotions that will surround the death of her husband, but the practicality of it.

Without Ted’s help, Betty will be completely alone in running their household, including finances that Ted manages online.

“I don’t like computers, so I’m learning about the computer,” Betty said. “He’s very careful with all our money and how it goes and where it goes to and so forth, so he’s teaching me.”

When a person maps out different scenarios for his death and decides what he’d like to do in each situation, it lifts a burden from any family who may be stressed out about what to do following a terminal diagnosis, said Charley Wasson, executive director and CEO of Hospice of Lubbock.

He said it also takes away second-guessing and allows families to make end-of-life decisions confidently instead of out of fear.

As Betty takes care of her husband during his illness, Ted knows she’s already suffering the grief of losing him.

Ted also experiences grief in not being able to take care of Betty when it’s her time to die.

“I’ll be gone and who will be that close to her? Children, of course, but they have their own lives,” Ted said. “You can hire doctors and nurses, but it won’t be anyone that close to her as she is to me. … That’s a loss that I have and every day I have to see her and know that she’ll have to go through much of this death by herself and won’t have me there to do what she does for me.”

Making the decision

The shots would cost $5,000.

It was too much.

Ted knew the treatment would be covered by Medicare. But, he already had his rules in place, including not using community resources to prolong his life for only a couple of months when he had already exceeded the life expectancy for the average American male.

After the cancer diagnosis, the doctor told him about the recommended treatment, including radiation, surgery and, of course, the shots.

“After you’re 80 years old, some studies show you’ll spend more on the last six months of your life then you spent your first 80 years of your life,” Dotts said. “Some of those expenses are extremely high.”

Created in 1965, Medicare was intended to answer growing reports of impoverished seniors languishing or dying because they lacked health insurance.

According to Centers for Medicare & Medicaid Services, more than 50 million seniors and nearly 3 million Texans are enrolled in the government program. Even though Medicare spending is trending down by nearly $1,200 per beneficiary, overall spending grew 3.4 percent to $585.7 billion in 2013, or 20 percent of the nation’s total health expenditures.

Dotts doesn’t want any part in it.

Instead of spending Medicare funds on prolonging his already fulfilling life, Dotts said he would rather those funds be available for his 18-year-old grandchild or 40-year-old child.

That’s one of the main reasons that outside of pain medication, Dotts isn’t taking anything to treat the cancer.

“I’ve known Ted for years and so he had a very thoughtful, long progression of thought. He’s held this standard that this is how he’s going to die: He’s not going to use community resources and he is going to utilize hospice for years,” Wasson said. “That’s not only a gift to himself but a gift to his family and the people around him. He’s very comfortable in that decision.”

Wasson said he agrees with Ted’s decision to focus on quality of life rather than prolonging it.

“If many people had the opportunity to talk to Ted and his rationale about why he made that decision many years ago, why he’s held true to that decision for many years, I think a lot of people would see wisdom in it,” Wasson said. “But I don’t think a lot of people get to because they don’t have the conversation.”

Ted and Betty moved to the Carillon LifeCare Community seven years ago, knowing they’re at the other spectrum of life.

Although Betty said Americans may be living longer, there’s still a responsibility to take care of future generations.

“It’s just not fair for our children and grandchildren, just because he could spend a lot of money (on cancer treatment) and Medicare would pay for it,” Betty said. “But somebody is paying for that and money is going to be taken from here to give to there and he said, ‘I do not want to take the community resources from others just so I could live a few more months.’ ”

Dealing with the pain

Betty imagines her husband falling to the floor as he’s walking up the stairs to their apartment. Other times she pictures him stumbling and pretending to faint. Betty knows it’s not real; they’re simply imagining for the inevitable.

“There’s so much involved. It’s a major event in life to die and we try to get through it without talking about it, but then all of a sudden you’ll be faced with it,” Ted said. “We get to share that and the rich depth of (imagining death). I thought we were pretty close but we’ve gotten closer than I ever dreamed now that death is next door.”

Although he hasn’t broken any bones yet, Ted’s pain varies on a daily basis. Eventually it was bad enough that he received a shot that doctors assured him was not for longevity, but rather to help alleviate the severe pain.

“They warned him the pain is going to get worse for two weeks and then it will drop, and so on a scale of 1 to 10 he got at least to a 7 and maybe higher,” Betty said. “You can’t sleep when you have that kind of pain, but then it did drop after two weeks and it’s gone down. … Many people live with pain and it’s learning to manage the pain. It’s not that he doesn’t feel it, but it’s where it doesn’t dominate him.”

Despite the pain Ted endures, Betty said she wasn’t surprised by her husband’s decision to receive palliative care rather than curative treatment.

“His personality is one in which he thinks things through and reasons things through, tries to see both sides and to see the larger picture. He does not just jump into something, knee-jerk,” Betty said. “Most mornings he will be studying for several hours and he studies not just the Bible or theology, but psychology or history and certainly death.”

Lasting legacy

By helping residents with paperwork for food stamps, the Dottses still connect with the community around them despite living in a retirement home. They know their pain will end soon and that it doesn’t compare to the suffering others endure daily.

Ted hosts local radio show “Faith Matters” but has contributed to the community in the past as a longtime clergyman and his work as former senior vice president of ethics and faith for the Covenant Health System.

The Dottses also started the first Parents, Families and Friends of Lesbians and Gays in Lubbock in 1993.

“We started the PFLAG and that was overshadowed with fear and anxiety of persecution or vandalism or maliciousness. I don’t think that’s near as possible now, plus you have gay marriage that has passed in several states so I think it’s a movement that’s thriving and flourishing and helping people care for each other,” Ted said. “I go to sleep at night, and Betty does too, very grateful that we got involved. … People who have same-sex love and they’re persecuted over it, it can make them mean and bitter but for the most part.”

And through panel discussions at churches around Lubbock, Dotts has also shared his end-of-life decision with the community, once again bringing to the forefront a topic that may be difficult for some people to face.

Wasson said he hopes Ted’s openness inspires residents to talk about end-of-life decisions and discuss at what point it becomes about quality of life, rather than treatment to add a few months or years of battling an illness.

“In America we are a death-averse society. We don’t like to talk about death, which is why Ted’s talk the other night was so special, because he was very honest and open about death and his journey,” Wasson said. “I think this is quintessential Ted. He is great at bringing people together and talking about the tough in life and doing it with a great amount of grace and eloquence.”

Accepting death

Ted doesn’t know if he has two months left to live, or two years. But, the couple’s faith puts them at ease.

“I don’t think God even notices whether we’re dead or alive,” Betty said. “It doesn’t matter that much; we are still loved by God whether we’re here or there, and what there is, we don’t know, we haven’t been there. But, it’s our faith and that trust (that) we’re going to be cared for and loved and it’s going to be alright. It’s going to be good so I don’t have to get all uptight (about dying).”

They do have their moments of grief, but the couple mostly laughs and teases one other.

They realize this time next year, Ted may be dead, but the talks about his death have brought them closer.

“It’s like being able to see into each other’s heart and to be right with them,” said Betty, who will turn 79 in a few weeks. “He kept saying he wanted to live longer so he could take care of me when I died, but he’s dying first.”
Complete Article HERE!

December 15, 2014

‘Warehouses for dying people’: Are we prolonging life or prolonging death?

By Peter Whoriskey

The doctor floated through the intensive care unit, white lab coat flapping, moving from room to room, scanning one chart and then another, often frowning.

Unlike TV dramas, where the victims of car crashes and gun shots populate the ICU, this one at Sentara Norfolk General, as in others in the United States, is more often filled with the wreckage of chronic disease and old age.

Of 10 patients Paul Marik saw that morning, five had end-stage kidney disease, three had chronic respiratory ailments, some had advanced dementia. Some were breathing by virtue of machines; others had feeding tubes; a couple were in wrist restraints to prevent them from pulling off the equipment.

For a man at a highly rated hospital surrounded by the technology of medical miracles, Marik sounded a note of striking skepticism: Patients too often suffer in vain attempts to prolong life, he said, because of the mandate to “do everything.” The urge to deploy every last aggressive medical technique, in other words, was hurting people.

“I think if someone from Mars came and saw some of these people, they would say, what have they done to deserve this punishment?” said Marik, gesturing to the surrounding rooms. “People might say we are prolonging life, but we end up prolonging death.”

Critics of U.S. health care have long marshaled evidence against the overuse of aggressive end-of-life care, but the idea that many Americans are dying badly — subjected to desperate treatments in ways that are not only expensive but painful and medically futile — has gained currency of late.

This fall, a photogenic 29-year-old with brain cancer made the cover of People magazine with the decision to end her life on her own terms. About the same time, Medicare proposed that doctors be paid for discussing with patients their options for treatment — or not — at the end of life. And on the best-sellers lists is “Being Mortal,” a surgeon’s critique of the way the United States handles decline and death.

In it, author Atul Gawande warns, among other things, that “spending one’s final days in an ICU because of terminal illness is for most people a kind of failure.”

Marik’s long-standing argument, which is notable in part for coming from an ICU doctor, is this: The nation has double or triple as many ICU beds per capita as other Western nations, it spends inordinate amounts of money in the last months of life, and worst of all, this kind of care isn’t what patients want.

His doubts about end-of-life care appear to be widely shared among his ICU colleagues.

A 2013 survey conducted in one academic medical center, for example, found that critical care clinicians believed that 11 percent of their patients received care that was futile; another 9 percent received care that was probably futile, it said.

Marik blames, in part, people’s unwillingness to face up to the inevitable.

“Americans not only don’t want to die, they are unwilling to accept the reality of death,” said Marik, who is also a professor at Eastern Virginia Medical School and chief of critical medicine at the school. “Unfortunately, old people get diseases and die.”

It pays to provide treatment

The remedy lies, in part, with hospices, which are hired to take care of patients after they opt out of aggressive end-of-life care.

Amid rapid growth, that industry has been marked by infrequent government inspections and, in places, lapses in quality. But when the service has been properly provided, families sometimes describe it as a godsend, and experts say hospices serve a critical role in the U.S. health system.

A number of factors, economic and personal, keep many patients from enrolling in hospice care, however.

For starters, it pays to keep dying patients undergoing more treatment, according to experts.

“Financial incentives built into the programs that most often serve people with advanced serious illnesses — Medicare and Medicaid — encourage providers to render more services and more intensive services than are necessary or beneficial,” according to Dying in America, a massive report issued in September by the Institute of Medicine.

But strains at a more personal level also keep patients in treatment.

Doctors are reluctant to disappoint a patient with the grim truth, and knowingly or not, keep false hopes alive. Families meanwhile sometimes overestimate the power of modern medicine.

Take, for example, the use of CPR, the technique that can restart a heart, but which, particularly in the elderly, can result in broken ribs, and even if successful in reviving a patient, may lead to a much-diminished quality of life.

“Have you ever seen it done on television?” Marik asks, rolling down a corridor with a class of students behind him. “They all wake up right away. But in real life, only about 5 to 10 percent of people — if they’re over 70 — leave the hospital alive.”

Indeed, a 1996 New England Journal of Medicine an analysis of popular shows like “ER,” showed that two-thirds treated by CPR survived until discharge.

“When CPR became widespread in the ’60s, it wasn’t considered ethical to perform it on people who are unlikely to recover,” Marik said. “Now it’s done all the time, regardless of the consequences.”

‘A warehouse for the dying’

Marik has been making his argument in published papers at least as far back as 2006, and his criticism echoes others in the field. An ICU doctor in Gawande’s book, for example, complains that she is running “a warehouse for the dying.”

“We’re kind of powerless to change the system — this is what society expects of us and what we are legally required to do,” Marik said. “But many clinicians are frustrated.”

Nurses, who interact with patients more, may be just as adamant about the issue. They see patients grimacing as they clean wounds around tubes into the lungs or stomach; they see confused patients trying to remove breathing equipment; they treat the bed sores of patients immobilized for long periods.

“There are cases where you honestly feel like you are just causing more harm or pain to the patient and you wonder if their family really understands what’s going on,” said Karen Richendollar, a nurse at the intensive care unit at Sentara Leigh Hospital here.

Surveys of intensive care nurses at 14 ICUs in Virginia, published in 2007 in the journal Critical Care Medicine, found that the leading cause of moral distress arises from the pressure to continue aggressive treatment in cases where the nurses do not think such treatment is warranted.

“The distress comes when there is no hope that whatever we are going to do will provide any different outcome,” said Becky Devlin, the supervisor in the ICU here. “The patient is going to die anyway, and we are just prolonging things. That’s where the distress comes in.”

For example, Devlin and Richendollar said, a woman then in their care was more than 90 years old, with blood pressure and severe kidney problems as well as severe dementia. She was being fed through a tube and had a urinary catheter.

Most imposingly, the woman was breathing via a ventilator, and to prevent her from removing the tube that had been inserted into her mouth and down her throat, restraints tied her hands to the sides of the bed.

“No one can be comfortable with all of that,” Devlin said. “Some of the family members are against further treatment, but there are others that make the decisions and they want to keep going.”

End-of-life planning key

One key way to avoid unwanted treatment, according to experts, is to solicit a person’s preferences for end-of-life care before a crisis arrives.

Toward that end, Sentara, which was ranked this year atop the “Best Hospitals in Virginia” by U.S. News & World Report, joined a coalition of hospitals and agencies on aging that in November launched a program to promote end-of-life planning in the Norfolk and Virginia Beach area. It has set up a Web site, asyouwishvirginia.org.

The program hopes to inspire people to write down their wishes and appoint a health-care advocate to speak for them if they can no longer do so. Organizers will blanket the region’s religious group and elderly care organizations to encourage people to make end-of-life plans.

“Unfortunately when these situations [in the ICU] come up, families will say, ‘Doc, what should I do?’ But that’s not something that doctors can really answer,” said David Murray, director of the group, known as the Advance Care Planning Coalition of Eastern Virginia. “We need to hear from the patients or their representatives — earlier than we do now.”

Take, for example, one of Marik’s patients, a 72-year-old woman who’d come into the emergency room last month after her family found her confused.

Living at home, she’d long been beset by multiple health woes, mainly congestive heart failure and respiratory problems and bipolar disorder. Given her fragility, it would have been natural to have elicited her end-of-life wishes.

No one did, however, and at the hospital last month the hospital staff and the family spent several anguishing days discussing how best to proceed with her care.

Her labored breathing — her inability to draw in oxygen — was the central problem for the doctors. As she struggled for air, the carbon dioxide levels in her blood rose to dangerous levels. She grew anxious as a result, and this only worsened her breathing.

She was moved to the ICU.

The staff placed an oxygen mask called a biPAP around her head, fitting it snugly around her mouth and nose. The device forces oxygen from a hose into the nose and mouth, but it is often uncomfortable.

As a result, the patient was at risk of removing it. So in addition to being sedated, her hands were restrained — tied by cloth belts to the sides of her bed.

She could be heard that Monday calling out, at times, unintelligibly.

“Take me, Jesus,” she shouted at one point.

She wasn’t the only one bothered by the arrangement.

“The nurses and I were really uncomfortable — this poor little old lady,” Marik said. “She was an elderly demented lady with chronic end-stage lung disease. . . . We were subjecting her to a lot of pain and indignity with very little potential for gain. We shouldn’t be forced into that kind of situation, but we often are.”

By Wednesday, the hospital’s palliative medicine team met with family members, and in the coming days, the patient’s sister and daughter decided to forgo aggressive treatment and opt for measures meant primarily to keep her comfortable.

The uncomfortable mask and the wrist restraints came off. Her vitamins and cholesterol drugs were stopped. She was given medicine for her anxiety, which family members said had been a long-running source of trouble for the patient.

The patient was also prescribed morphine, a drug sometimes avoided until the end of life, but one that relieves pain and calms breathing. Nurses were instructed to give her morphine when her breaths exceeded 20 per minute.

Placed under hospice care, she was sent to a nursing home the next Monday.

There, the patient seemed to rally, regaining the ability to interact with family members. The color returned to her face. She even said she was enjoying music they brought in.

A few days later, after the family had the chance to call in distant relatives, she died.

Marissa C. Galicia-Castillo, a doctor in the hospital’s palliative medicine department, said it is common for patients to die in the ICU hooked up to machines.

“Fortunately . . . [this patient] was able to get out of the hospital into a more home-like environment, enjoy some familiar comforts, visiting and talking with loved ones before the natural end of her life,” she said.

But it wasn’t without the torment before the family decided that the aggressive measures may be introducing more pain than relief. Sometimes frail elderly patients languish weeks or months before family members opt for the comfort measures. Sometimes they die hooked up to multiple machines. In this sense, this patient constituted a success.

“We all knew she was dying, and that was the tragedy,” Marik said. “We knew we were just prolonging her death.”

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