What does a good death look like when you're really old and ready to go?

Hawaii recently joined the growing number of states and countries where doctor-assisted dying is legal. In these jurisdictions, help to die is rarely extended to those who don't have a terminal illness. Yet, increasingly, very old people, without a terminal illness, who feel that they have lived too long, are arguing that they also have a right to such assistance.

27 may 2018--Media coverage of David Goodall, the 104-year-old Australian scientist who travelled to Switzerland for assisted dying, demonstrates the level of public interest in ethical dilemmas at the extremities of life. Goodall wanted to die because he no longer enjoyed life. Shortly before his death, he told reporters that he spends most of his day just sitting. "What's the use of that?" he asked.
Research shows that life can be a constant struggle for the very old, with social connections hard to sustain and health increasingly fragile. Studies looking specifically at the motivation for assisted dying among the very old show that many feel a deep sense of loneliness, tiredness, an inability to express their individuality by taking part in activities that are important to them, and a hatred of dependency.
Of the jurisdictions where assisted dying is legal, some make suffering the determinant (Canada, for example). Others require a prognosis of six months (California, for example). Mainly, though, the focus is on people who have a terminal illness because it is seen as less of an ethical problem to hasten the death of someone who is already dying than someone who is simply tired of life.

Why give precedence to physical suffering?

Assisted dying for people with psychological or existential reasons for wanting to end their life is unlikely to be supported by doctors because it is not objectively verifiable and also potentially remediable. In the Netherlands, despite the legal power to offer assistance where there is no life-limiting illness, doctors are seldom convinced of the unbearable nature of non-physical suffering, and so will rarely administer a lethal dose in such cases.
Although doctors may look to a physical diagnosis to give them confidence in their decision to hasten a patient's death, physical symptoms are often not mentioned by the people they are assisting. Instead, the most common reason given by those who have received help to die is loss of autonomy. Other common reasons are to avoid burdening others and not being able to enjoy one's life – the exact same reason given by Goodall. This suggests that requests from people with terminal illness, and from those who are just very old and ready to go, are not as different as both the law – and doctors' interpretation of the law – claim them to be.

Sympathetic coverage

It seems that the general public does not draw a clear distinction either. Most of the media coverage of Goodall's journey to Switzerland was sympathetic, to the dismay of opponents of assisted dying.
Media reports about ageing celebrities endorsing assisted dying in cases of both terminal illness and very old age, blur the distinction still further.
One of the reasons for this categorical confusion is that, at root, this debate is about what a good death looks like, and this doesn't rely on prognosis; it relies on personality. And, it's worth remembering, the personalities of the very old are as diverse as those of the very young.
Discussion of assisted suicide often focuses on concerns that some older people may be exposed to coercion by carers or family members. But older people also play another role in this debate. They make up the rank and file activists of the global right-to-die movement. In this conflict of rights, protectionist impulses conflict with these older activists' demands to die on their own terms and at a time of their own choosing.
In light of the unprecedented ageing of the world's population and increasing longevity, it is important to think about what a good death looks like in deep old age. In an era when more jurisdictions are passing laws to permit doctor-assisted dying, the choreographed death of a 104-year-old, who died listening to Ode to Joy after enjoying a last fish supper, starts to look like a socially approved good death.

This article was originally published on The Conversation. Read the original article.

Provided by The Conversation

What can we do about death? Reinventing the American medical system

03 jun 2011-- In a feature article in The New Republic, Daniel Callahan and Sherwin Nuland propose a radical reinvention of the American medical system requiring new ways of thinking about living, aging, and dying. They argue that a sustainable -- and more humane -- medical system in the U.S. will have to reprioritize to emphasize public health and prevention for the young, and care not cure for the elderly.

An interesting twist on their argument, which would aim to bring everyone's life expectancy up to an average age of 80 years but give highest priority for medical treatment to those under 80, is that Callahan and Nuland are themselves 80 years old. Daniel Callahan, Ph.D., is cofounder and president emeritus of The Hastings Center and author most recently of Taming the Beloved Beast: How Medical Technology Costs Are Destroying Our Health Care System. Sherwin Nuland, M.D., is a retired Clinical Professor of Surgery at the Yale School of Medicine and author of How We Die and the Art of Aging. He is also a Hastings Center Fellow and Board member.

"The real problem is that we have medicine excessively driven by progress, which aims to rid us of death and disease and treats them as the targets of unlimited medical warfare," said Callahan and Nuland. "That warfare, however, has come to look like the trench warfare of World War I: great human and economic cost for little progress. Neither infectious disease nor the chronic diseases of an aging society will soon be cured. Cancer, heart disease, stroke, and Alzheimer's disease are our fate for the foreseeable future. Medicine and the public must adapt it to that reality, one that has mainly brought us lives that end poorly and expensively in old age."

The article notes that the Affordable Care Act might ease the financial burden of this system, but not eliminate it. It reports, for example, that the cost of Alzheimer's disease is projected to rise from $91 billion in 2005 to $189 billion in 2015, and to $1 trillion in 2025 – twice the cost of Medicare expenditures for all diseases now.

"We need to change our priorities for the elderly. Death is not the only bad thing that can happen to an elderly person," the authors write. "An old age marked by disability, economic insecurity, and social isolation are also great evils." They endorse a culture of care, not cure, for the elderly, with a stronger Social Security program and a Medicare program weighted toward primary care that supports preventative measures and independent living.

Callahan and Nuland point the way to a more sustainable path that reprioritizes the entire system. Among their recommendations:

• improve medicine at the level of public health and primary care, while reducing its use for expensive high-tech end-of-life care;
  
• shift resources for the elderly to greater economic and social security and away from more medical care;
  
• subsidize the education of physicians, particularly those who go into primary care, and decrease medical subspecialization;
  
• train physicians better to tell the truth to patients about the way excessively aggressive medicine can increase the likelihood of a poor death;
  
• shift the emphasis in chronic disease to care rather than cure;
  
• conduct a top-down, bottom-up, long-range study of the entire American system of health care, including the training of physicians, with a view toward reconstituting it along systematic lines that take science, humanistic concerns, economics, and social issues into account.

Provided by The Hastings Center

More Canadians choosing to die at home

NEW YORK ,06 june 2009-- The number of Canadians who are opting to live out their last days at home instead of the hospital has increased over the past 15 years, according to a new study.

In 1994, about 78 percent of the nation's deaths occurred in a hospital, but by 2004 that figure had fallen to 61 percent, the study found.

The reasons for the decline are not known, but it happened in the absence of any direct shifts in government policy, researchers report in the journal Social Science & Medicine.

"My guess is that a lot of it has to do with the fact that death is no longer unexpected," lead researcher Donna M. Wilson, of the University of Alberta in Edmonton, Canada, said in a news release from the university.

"A lot of people are dying at an advanced age and you begin to accept the fact that it's going to happen and it (can be) a dignified event," Wilson said. "If you take the person to the hospital ... care is by strangers rather than family members."

The study found that while deaths in nursing homes increased -- from 3 percent of the total in 1994, to 10 percent in 2004 -- many more occurred in "non-institutional" settings, including people's own homes. In 2004, 30 percent of deaths happened in a non-institutional setting, up from less than 20 percent in 1994.

According to Wilson, the trend is a positive one not only because it may mean more people are choosing to die in the place where they are most comfortable, but also because it could free up more hospital beds for people who need life-saving treatments.

It also means that the Canadian health care system should do more to support people who opt to die at home, the researcher said.

Compared with countries such as the UK and U.S., Wilson's team notes, Canada has few hospice clinics and fewer home-care services aimed at making people comfortable in their last days.

"We need to start putting more money into home care and develop some hospices, have some courses for families and maybe build a few more nursing home beds," Wilson said.

She pointed out that as the Baby Boom generation ages, the number of Canadians dying each year could double over the next 10 to 20 years.

SOURCE: Social Science & Medicine, May 2009.

Dying At Home: A Trend That Could Make Hospitals More Efficient

25 may 2009--Hospitals across Canada are seeking ways to free up beds. University of Alberta researcher Donna Wilson has a suggestion: people should be encouraged to die at home rather than in hospital.

She looked at statistics dating back to 1950 and has found that there's been a dramatic change in the location of death of Canadians. Up until 1994, about 80 per cent of people dying each year were passing on in hospital. Now that number is down to 61 per cent, and Wilson is hoping the trend continues.

She'd like to see only 40 per cent of people passing on in hospital because, with an aging baby boom population, this could reduce wait lists and free up hospital beds for those who need life-saving treatment or surgery. In most cases, she says, it's also a much more dignified death for a family member.

Wilson says in the next 20 years the number of people dying could double and if death rates in hospital stay at 80 per cent. those numbers mean a potential tie-up of every single bed in Canada for three days of the year, because each person takes up a bed for an average of 10 days.

The professor in the Faculty of Nursing wants to see governments put more money into developing hospices, nursing homes and training for home care.

Source:
Quinn Phillips
University of Alberta

Dying at home: A trend that could make hospitals more efficient

20 may 2009--Hospitals across Canada are seeking ways to free up beds. University of Alberta researcher Donna Wilson has a suggestion: people should be encouraged to die at home rather than in hospital.

She looked at statistics dating back to 1950 and has found that there's been a dramatic change in the location of death of Canadians. Up until 1994, about 80 per cent of people dying each year were passing on in hospital. Now that number is down to 61 per cent, and Wilson is hoping the trend continues.

She'd like to see only 40 per cent of people passing on in hospital because, with an aging baby boom population, this could reduce wait lists and free up hospital beds for those who need life-saving treatment or surgery. In most cases, she says, it's also a much more dignified death for a family member.

Wilson says in the next 20 years the number of people dying could double and if death rates in hospital stay at 80 per cent. those numbers mean a potential tie-up of every single bed in Canada for three days of the year, because each person takes up a bed for an average of 10 days.

The professor in the Faculty of Nursing wants to see governments put more money into developing hospices, nursing homes and training for home care.

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Wilson is available to talk further about her study today and all through next week. Please contact me directly to set up an interview. I can also provide you a copy of the study.

Many think God's intervention can revive the dying

By LINDSEY TANNER
CHICAGO, 19 aug 2008 – When it comes to saving lives, God trumps doctors for many Americans. An eye-opening survey reveals widespread belief that divine intervention can revive dying patients. And, researchers said, doctors "need to be prepared to deal with families who are waiting for a miracle."
More than half of randomly surveyed adults — 57 percent — said God's intervention could save a family member even if physicians declared treatment would be futile. And nearly three-quarters said patients have a right to demand such treatment.
When asked to imagine their own relatives being gravely ill or injured, nearly 20 percent of doctors and other medical workers said God could reverse a hopeless outcome.
"Sensitivity to this belief will promote development of a trusting relationship" with patients and their families, according to researchers. That trust, they said, is needed to help doctors explain objective, overwhelming scientific evidence showing that continued treatment would be worthless.
Pat Loder, a Milford, Mich., woman whose two young children were killed in a 1991 car crash, said she clung to a belief that God would intervene when things looked hopeless.
"When you're a parent and you're standing over the body of your child who you think is dying ... you have to have that" belief, Loder said.
While doctors should be prepared to deal with those beliefs, they also shouldn't "sugarcoat" the truth about a patient's condition, Loder said.
Being honest in a sensitive way helps family members make excruciating decisions about whether to let dying patients linger, or allow doctors to turn off life-prolonging equipment so that organs can be donated, Loder said.
Loder was driving when a speeding motorcycle slammed into the family's car. Both children were rushed unconscious to hospitals, and Loder says she believes doctors did everything they could. They were not able to revive her 5-year-old son; soon after her 8-year-old daughter was declared brain dead.
She said her beliefs about divine intervention have changed.
"I have become more of a realist," she said. "I know that none of us are immune from anything."
Loder was not involved in the survey, which appears in Monday's Archives of Surgery.
It involved 1,000 U.S. adults randomly selected to answer questions by telephone about their views on end-of-life medical care. They were surveyed in 2005, along with 774 doctors, nurses and other medical workers who responded to mailed questions.
Survey questions mostly dealt with untimely deaths from trauma such as accidents and violence. These deaths are often particularly tough on relatives because they are more unexpected than deaths from lingering illnesses such as cancer, and the patients tend to be younger.
Dr. Lenworth Jacobs, a University of Connecticut surgery professor and trauma chief at Hartford Hospital, was the lead author.
He said trauma treatment advances have allowed patients who previously would have died at the scene to survive longer. That shift means hospital trauma specialists "are much more heavily engaged in the death process," he said.
Jacobs said he frequently meets people who think God will save their dying loved one and who want medical procedures to continue.
"You can't say, 'That's nonsense.' You have to respect that" and try to show them X-rays, CAT scans and other medical evidence indicating death is imminent, he said.
Relatives need to know that "it's not that you don't want a miracle to happen, it's just that is not going to happen today with this patient," he said.
Families occasionally persist and hospitals have gone to court seeking to stop medical treatment doctors believe is futile, but such cases are quite rare.
Dr. Michael Sise, trauma medical director at Scripps Mercy Hospital in San Diego, called the study "a great contribution" to one of the most intense issues doctors face.
Sise, a Catholic doctor working in a Catholic hospital, said miracles don't happen when medical evidence shows death is near.
"That's just not a realistic situation," he said.
Sise recalled a teenager severely injured in a gang beating who died soon afterward at his hospital.
The mother "absolutely did not want to withdraw" medical equipment despite the severity of her child's brain injuries, which ensured she would never wake up, Sise said. "The mom was playing religious tapes in the room, and obviously was very focused on looking for a miracle."
Claudia McCormick, a nurse and trauma program director at Duke University Hospital, said she also has never seen that kind of miracle. But her niece's recovery after being hit by a boat while inner-tubing earlier this year came close.
The boat backed into her and its propeller "caught her in the side of the head. She had no pulse when they pulled her out of the water," McCormick said.
Doctors at the hospital where she was airlifted said "it really doesn't look good." And while it never reached the point where withdrawing lifesaving equipment was discussed, McCormick recalled one of her doctors saying later: '"God has plans for this child. I never thought she'd be here.'"
Like many hospitals, Duke uses a team approach to help relatives deal with dying trauma victims, enlisting social workers, grief counselors and chaplains to work with doctors and nurses.
If the family still says, "We just can't shut that machine off, then, you know what, we can't shut that machine off," McCormick said.
"Sometimes," she said, "you might have a family that's having a hard time and it might take another day, and that's OK."