Can sheer willpower keep patients alive in their dying hours?

By Bob Tedeschi


Marjorie Severance had lived 91 years, five months, and two weeks when, if you believe such things, she decided she could let herself die.

She had completed all of her funeral and memorial service plans. Her finances were set. “Gramma Marj,” as she was known to her many grandchildren and great-grandchildren, spent the last weeks of her life sprucing up her jewelry collection and choosing beneficiaries.

Her granddaughter, Jan Schultz, who was helping with the jewelry, was dragging her feet getting the two last rings fixed.

“I had a feeling that as soon as this was done, she’d be done,” Schultz recalled.

When a great-grandson visited her for supper at her assisted-living facility in Madison, Wis., earlier this month, Gramma Marj ushered him out early. The family laughed about it, but the next day she barely woke.

Schultz called Gramma Marj’s son in Texas and told him to get there fast. Then she told her grandmother that her son was on his way and would arrive the following day. Gramma Marj’s eyes stayed closed; she was alive but largely unresponsive.

The next day, her son arrived. She opened her eyes for him. And then, not long after, in the solitude of her room, Marjorie Severance passed away.

The question of whether Severance somehow prolonged her life will forever remain a mystery. But it is hardly a mystery that stands on its own.

Hospice and palliative care clinicians routinely see cases in which people who are nearing life’s end seem to will themselves to hold on until a certain point, after which time they let go.

And while some people hold on long enough to see a loved one, others seem to do the opposite, clinging to life until they are left alone.

Dr. Toby Campbell, an oncologist and palliative care specialist at the University of Wisconsin, Madison, said patients tend not to have a lot of control at the very end of their lives. But that doesn’t mean they don’t have any.

“People in end-of-life care wouldn’t bat an eye if you asked if they think people can, to a certain degree, control those final moments,” Campbell said. “We’d all say, ‘Well, yeah. Sure.’ But it’s inexplicable.”

If these well-timed deaths are anything but coincidental, medical scientists appear unlikely to be able to provide an explanation anytime soon. A body of scientific literature called “the will to live near death” explores questions at the fringe of this topic, but the research focuses more squarely on how one’s will to live might affect life expectancy.

When it comes to extending one’s life by hours, seemingly through sheer will, Campbell believes the dying “probably have some kind of hormonal stimulus that’s just a driver to keep them going. Then, when whatever event they were waiting for happens, the stimulus goes away, and there must be some kind of relaxing into it that then allows them to die.”

In one memorable experience, Campbell recalled three sisters who had gathered in the hospital room of their elderly mother after she’d suffered a stroke. One sister lived nearby and the others joined from out of town, holding vigil for several days.

The mother was unresponsive, and though her prognosis was grim, she wasn’t actively dying. “They were having really a lovely time bonding together, but then life was kind of moving on and in truth they were ready for mom to die,” Campbell said.

One morning, he told them that their mother might actually want to die — but not with them present. Some people deem the dying process too personal to share, while others don’t want to expose family members to the trauma of watching them go.

The sisters, Campbell said, ” immediately grabbed onto the idea, and right then, they said, ‘Mom, we’re going out for breakfast. We’ll be gone for two or three hours, and then we’re going to come back and see you. So if you need to be alone to do this, now’s a good time.’”

Campbell left the room. The sisters left soon after. Their mother died while they were gone.

“They were sad, of course,” he said. “But they felt like they had done right by her.”

Jan Schultz felt that way too. Her grandmother had worked her way from bank teller to vice president over a 40-year career in finance. She was a proud matriarch, both loving and deeply beloved. Schultz said it would have been out of character for Gramma Marj to die before her son arrived, and it would have been equally out of character for her to burden him or anyone else with the sight of her death.

So in retrospect, it was little surprise that when Gramma Marj’s son arrived, her condition noticeably changed.

“I could almost see a sense of calmness over her when he arrived,” Schultz said.

Gramma Marj opened her eyes for him. She heard him leave. And then, after he was gone, her heart went quiet.

Complete Article HERE!

Dying with a plan: Do not go unprepared into that good night

DUST IN THE WIND: The Carolina Memorial Sanctuary is an 11-acre conservation burial ground where bodies are buried in biodegradable vessels. Above, a funeral takes place at CMS, which is also a conservation easement and North Carolina's first conservation burial ground.
DUST IN THE WIND: The Carolina Memorial Sanctuary is an 11-acre conservation burial ground where bodies are buried in biodegradable vessels. Above, a funeral takes place at CMS, which is also a conservation easement and North Carolina’s first conservation burial ground.

by Dan Hesse

Spoiler alert: You’re going to die. You already know that, but how much preparation for the inevitable have you made?

Living in Buncombe County, we can expect to live for 79.2 years, according to the local Health & Human Services Department. In a county with a quarter-million people, about 2,315 pass annually, an average based on 11,579 deaths in the five-year period from 2008–12, per a study by the department. The top three causes of death during those five years was cancer (2,563), heart disease (2,513) and chronic lower respiratory disease (784).

Last year was harder on us, though: 3,564 people died in Buncombe, the deputy registrar reports.

About 19 percent of Buncombe’s residents are 65 or older, according to 2015 U.S. census data — or 48,103 elders among a total population of 253,178. Of course, 65 is by no means the beginning of the end, nor does death target only the aged. In the five-year period covered by the above-cited study, we lost 170 people between the ages of 20 and 39, and 1,356 people between the ages of 40 and 64. And in 2015, we lost 176 people between the ages of 15 and 44 and 648 people between the ages of 45 and 64.

Given the ubiquitous and unavoidable nature of death, it seems that it should be an event we’d all plan for. But is it?

No one can confidently say that he will be living tomorrow — Euripides

Societal attitudes, traditions and responses toward death vary, but death is, well, as old as life. Carol Motley, founder of Bury Me Naturally Coffins and Caskets, says the advent of the Civil War and the resulting new practice of embalming was a catalyst for what American society now recognizes as a traditional funeral. “Before the war, you would dig a hole and put a body in it. During the Civil War, embalming tents became common at battlegrounds. You could get shipped home and not stink. And that was appealing,” she notes wryly.

Josh Slocum, executive director of the Funeral Consumers Alliance, agrees that the so-called traditional funeral is a relatively new concept. “We have a really short historical memory, but when you look back into the 19th century, what we now call a traditional funeral — the chemical embalming; the public display at a commercial place of business; mass-manufactured caskets; the Cadillac hearse to the cemetery — it didn’t come along until the last quarter of the 19th century,” he says. “It was a commercially created tradition.”

The FCA is a national nonprofit focused on raising awareness about consumer and legal rights when dealing with the funeral industry. “Most Americans, your own family, just a short period of time ago, was having a funeral where the body was washed at home, laid out at your home, in a coffin built by a local woodworker or by somebody in the backyard,” Slocum says. “That was the conventional burial. Burial in a sheet or wood box is as old as human history.”

Death is just another path, one that we all must take — J. R. R. Tolkien

While many people aren’t intentional about addressing their death, it’s a topic worth exploring, says Caroline Yongue, executive director of the Center for End of Life Transition. The interfaith organization helps people make decisions and provide instructions regarding what happens to their body after death. “North Carolina law says loved ones can act as funeral directors, so it is possible to bypass the funeral industry completely. But you would need to be prepared for death, to be prepared for what it takes to handle it yourself,” Yongue says. And planning ahead is key. “We’ve defaulted to the funeral industry in the last several decades, so people aren’t aware that they have their own legal rights,” she continues, noting that after a loved one dies, it’s difficult to know what to do if end-of-life decisions aren’t made beforehand.

In many cases the deceased hadn’t been intentional about declaring wishes for their funeral and what they want to happen to their body, according to Yongue. Yet, there’s a comfort in not having to make those tough choices immediately after the last breath is declared: “A nurse or social worker walks in the room and asks, ‘Which funeral home do you want me to call?’ And the funeral home is called because that’s the path of least resistance.”

Motley concurs, saying that even those at the end of their path neglect the inevitable. “I can’t believe how many people are terminally ill, die and then we have to overnight a casket. Most of the time that’s what happens; you’re dealing with everything but the obvious,” she notes. “There’s not a place in our societal life where we address it. You have to make a concerted effort to do it. It’s not part of church, school, anything. And it should be. We should go ahead and fill out our death certificate.” You can get a death certificate in person, online or via mail, from the Buncombe County Register of Deeds.

Juanita Igo, a case manager with the Buncombe County Council on Aging, says she often sees that conversation placed on the back burner because of day-to-day stressors. “We work with people who don’t have enough resources to pay for their rent, their medication. … So sometimes just getting through the day is what they’re working on,” she notes.

Igo recommends using the Five Wishes document provided by the nonprofit Aging With Dignity. The document will help you determine what you want in regard to various aspects of medical and social preferences for the end of your life. “You’re taking people through a conversation that’s more natural to them, about what they want to have happen. Participants do have to get the form notarized, but it gets people thinking about those things and starts the conversation,” she says.

It’s not just the elderly who die, Igo adds. “It might be something that comes up suddenly, so it’s good to start the conversation.”

“Funeral planning has to be a family conversation, the same way we have conversations about where to go to college, how much it will cost and how we will pay for it,” says Slocum. He believes there is a distinctly American fear of death that keeps the subject irrationally inaccessible. “We don’t even like to say the word. If you look at the obituaries, and there’s 10 people in it, I bet you eight of them didn’t even die. They passed away, they went home to Jesus, but, by God, they didn’t die,” says Slocum.

The Rev. Ed Hillman, president of the FCA of Western North Carolina, also sees death as a taboo subject that needs to be brought into the light. “We don’t like to think about our own mortality. I think there’s an innate fear of death in all of us, and we think that somehow by talking about it, it will bring it about — which is not rational,” he says. Hillman points out that it’s everyone’s responsibility to have “the talk,” and that despite its uncomfortable nature, engaging the conversation can save anguish after a death. Unfortunately, “[not having the talk] can put our next of kin in a place where they have to guess what we want and end up spending resources that they might not even have in trying to figure out what a deceased person actually wanted,” he says. “The more detailed the plans, the less the next of kin has to guess about what the deceased person would want.”

Slocum says it also makes financial sense to determine your burial/cremation arrangements ahead of time. He urges people to approach this planning the same way they look for a car: Shop around. “Prices of funeral homes in the same city are wildly different. People don’t expect this. When you shop for a stereo, you’re shopping for a difference of price of about 35 percent; we don’t expect prices on the same model to range from $500 to $2,000. Not true at funeral homes,” he says. “You will find funeral homes, within driving distance of where you’re sitting right now, charging $1,000 for simple cremation and ones charging about $4,000 for that simple cremation.” The FCA of Western North Carolina compiles information about funeral costs in 14 counties. In Buncombe, the cost of cremation ranges from $895 to $4,460; and the cost of burial ranges from $1,495 to $6,940, with varying distances the funeral home will transport the body.

Slocum and Hillman make it clear that the FCA isn’t against the funeral industry. As Hillman notes, “The vast majority of funeral homes are really wonderful services for people, though every once in a while there are things people just do not need.” And Slocum adds that’s why the FCA’s mission is to educate consumers about their rights. “The Federal Trade Commission has the Funeral Rule that gives consumers important rights. You have the right to get quotes over the phone. Every funeral home you visit and talk about funeral arrangements with is required by law to hand you a printed, itemized price list at the beginning of the conversation,” he says. “Funeral homes are allowed to provide packages but they are not allowed to deny you itemized choices, and that’s one of the best ways to control funeral costs.”

Further, “Caskets, no matter what they’re made out of or how well they’re constructed, none of them will ‘protect or preserve your body.’ None of them will keep out air, water and dirt. None of them will keep you from decomposing,” Slocum notes. “There are caskets out there that are marketed as sealed and protective. And people of otherwise good sense can be misled. You’re going to be just as dead in a $10,000 casket as you are in a $2,500 cardboard box.”

As a well-spent day brings happy sleep, so life well-lived brings happy death — Leonardo da Vinci

But if a cardboard box is OK with you, there are ways to have a natural burial here in Western North Carolina. Yongue also runs the Carolina Memorial Sanctuary, an 11-acre plot of land that is the state’s first conservation burial ground. CMS has a conservation easement, and its burial techniques incorporate the chemical-free, unembalmed body, inside a biodegradable vessel, into the landscaping. “We all have a body, and it’s got to get recycled somehow. If we are conscientious about it, we can do it in a green way that has the least amount of impact on the planet,” she says. “Because we’ve got a lot of bodies on the planet.”

Yongue also doesn’t have anything bad to say about the funeral home industry. “Somebody’s got to deal with the bodies, but it’s incredibly expensive. And because people aren’t prepared, oftentimes they spend a lot more money than they would have if they had prepared for death,” she says. However, she knows unorthodox methods don’t always resonate. “Home funerals are not for everybody. Our hope is people become more informed about what their options are.”

Ultimately, Yongue believes, it’s about conveying postlife wishes, regardless of what those might be. Otherwise, she says, “It’s like going on a vacation, but you don’t plan for it. It would be like going to Europe, and the day of your trip arrives, you don’t have your passport, your luggage isn’t packed.”

Plus, a direct approach to death can have a positive effect on the living, Yongue posits. “If we walk around with death on our shoulder, we would be kinder, more compassionate, because everybody we see is going to die.”

Complete Article HERE!

The uplifting truth about end-of-life care

By Brandpoint

Preparing for end-of-life

When a loved one is critically ill, hearing that it’s time for hospice care can be devastating news. On top of the emotional upheaval of coping with a terminal illness, you may be unsure what hospice care really is — and believe it’s just an indication your loved one will likely pass away.

Yet the time your loved one spends in hospice care doesn’t have to be sad — for anyone. In fact, says Toni Norman, the senior director of hospice operations for Brookdale Senior Living, hospice can be a deeply rewarding time of great comfort for patients and their families.

“Hospice care is not about waiting for someone to die, and that’s unfortunately a very common misconception,” Norman says. “The goal of hospice is to provide to a patient, who has a life-limiting illness, the physical comfort and medical care they need to stay in their home for as long as possible, while at the same time supporting their caregivers. The hospice team helps families by educating, supporting and identifying any needs they have, ranging from chaplain support to finding mortuaries and veteran benefits.”

The decision to begin hospice care is a communal one, with the patient, caregivers, loved ones and medical professionals contributing to the dialogue. “A terminal diagnosis from a doctor usually begins the process of seeking hospice care,” Norman says. “Also, as a family member’s health begins to decline due to illness, conversations about end-of-life care are proactive and compassionate.”

Brookdale Senior Living’s hospice care providers often encounter common misconceptions about hospice care. Norman offers the truth behind some mistaken beliefs:

* Hospice is for the last few weeks of life. The hospice Medicare benefit is for the last six months, if the disease follows its normal course. “Most people who enter hospice have done so because they’ve received a diagnosis of a life-limiting illness,” Norman says. “But people who enter hospice often live longer, and with a better quality of life, than terminally ill people who do not go into hospice. Many are even able to come off hospice service if their condition improves.”

* Hospice means giving up. Hospice is actually a commitment to a high level of care for a loved one. “It means making them as comfortable and safe as possible so they may enjoy time with their loved ones for as long as possible,” Norman says.

* Patients are heavily medicated. Patients receive medication under strict physician guidelines, and caregivers closely monitor comfort care protocols so each patient’s pain and symptoms are uniquely managed.

* Hospice patients can no longer see their doctors. Patients can continue to see any of their previous doctors. Rather than taking anything away, hospice adds a layer of medical support.

* Hospice care ends when a patient dies. Because hospice cares for the patient’s caregivers and loved ones as well as the patient, hospice team members continue their support for 13 months after the patient passes away. The hospice team provides grief support for the families and will continue to work with them to address any lingering questions, and to help identify their needs.

“The hospice team is comprised of the assigned physician and nurses to provide the direct medical care to the patient, while a chaplain, social worker and bereavement counselor provide additional support and education to families and caregivers,” Norman says.

Hospice ideally occurs in a patient’s home, whether that’s a personal residence or assisted living community. It is a Medicare-reimbursed benefit, and most private insurance providers do also cover some hospice costs.

“End-of-life care isn’t just about taking pain medications to relieve symptoms until death,” Norman says. “It helps people gain emotional strength and carry on with daily life, while improving the quality of life. The goal is to help patients and their families make every remaining moment as comfortable and enriching as possible.”

Complete Article HERE!

How doctors are failing us in death

Never mind assisted-dying, our health care system needs to change the way it deals with the natural end of life


Mohamed Dhanani, left, with his father-in-law Ijaz Ahmad at a wedding last year. "The eight different doctors who treated my father-in-law all had different ideas about what (his wishes not to be life support) meant, and how involved the family should be in making treatment decisions," writes Mohamed Dhanani. "This inconsistency — the waiting, the arguing, the feeling of powerlessness — was our family’s worst experience with a health care system of which we are so often proud."
Mohamed Dhanani, left, with his father-in-law Ijaz Ahmad at a wedding last year. “The eight different doctors who treated my father-in-law all had different ideas about what (his wishes not to be life support) meant, and how involved the family should be in making treatment decisions,” writes Mohamed Dhanani. “This inconsistency — the waiting, the arguing, the feeling of powerlessness — was our family’s worst experience with a health care system of which we are so often proud.”

I’ve spent much of my career in the health care field, but it took a very personal experience to drive home just how poorly prepared health care providers are to help us through the one certain life-experience that awaits us all: death.

It happened in a hospital in southern Ontario. My father-in-law, Ijaz Ahmad, who lived with insulin-dependent diabetes for 35 years, went into the hospital for a partial foot amputation due to a bone infection.

Prior to surgery, a routine diagnostic test was performed requiring dye to be inserted into his bloodstream. After the surgery, the dye put him into kidney failure while it was being metabolized. Within a day of the surgery all of his organs started to fail and he was put on life support for what we were told would be two to three days so his organs could rest and strengthen — after which, we were told, “the doctors would bring him back.”

He spent the next 18 days on life support. And what became clear over that long 18-day ordeal is that what had clearly become the end of his life would have been unnecessarily prolonged depending on which of the eight doctors we interacted with was treating him that day.

Like so many families who have had the difficult but essential conversation with an aging parent around their end-of-life wishes, we had spoken with him about his wishes. He was clear he did not want to be on life support.

The eight doctors who treated my father-in-law all had different ideas about what those wishes meant, and how involved the family should be in making treatment decisions. This inconsistency — the waiting, the arguing, the feeling of powerlessness — was our family’s worst experience with a health care system of which we are so often proud.

Some of the doctors acknowledged his wishes but said life support was an essential part of the treatment plan; it was just a temporary measure to aid in his recovery. Others made very little effort to consult with us, and another outright refused! Another doctor assured us he would “bounce back,” though nurses told us this was increasingly unlikely and that the doctor was prone to sugar-coating discussions with families.

Because of this inconsistency, different members of my family were hearing different things — and that made it even more difficult for us to make a decision we all felt comfortable with. Finally, I pulled aside the latest doctor treating my father-in-law and asked him for an absolutely frank and direct discussion. Only then were we able to make an informed decision that respected my father-in-law’s wishes and provided as much comfort as possible to our family.

On my father-in-law’s 18th day on life support, and on what was to be the final day of his life, a new doctor was treating him. This doctor had trained and practiced in the U.K., and had only recently started to work in Ontario. His European training and experience gave him a different perspective on end-of-life care, and one for which we were grateful.

In Europe, the societal conversation on end-of-life care is more advanced than in Canada — they have grappled publicly with these essential issues of decision-making in health care for many years, and physicians have therefore become more comfortable discussing end-of-life decisions with their patients and families.

Not only is this an essential conversation we need to normalize as families and as a society, it is something our health care system must take on as an essential part of its work. All doctors must be trained to discuss end-of-life care in a direct and compassionate way with patients and their families. This will only become more important as people live longer, and as their health issues become more complex as they reach the end of their lives.

Over the last few years, Canadians have engaged in an impassioned debate on assisted death, a debate that culminated in landmark — and controversial — legislation in Parliament. But assisted death is just a small part of the issue.

As my family’s experience illustrates, end-of-life care and the difficult discussions surrounding that care are too inconsistent — inconsistent between institutions and inconsistent between doctors within a single hospital. It is something we can and must fix.

Surrounded by family and friends my father-in-law peacefully passed away within minutes of removing the breathing tube. He was 66 years old. May his soul rest in eternal peace.

Complete Article HERE!

Do You Want to Be Awake For Your Death?

By Chris Bodenner



Jennie Dear has an evocative piece for us examining the scant evidence that scientists have so far about the mysterious threshold between life and death—what the body goes through and how a person subjectively feels it, both in terms of pain and hallucinations:

“A lot of cardiac-arrest survivors describe that during their unconscious period, they have this amazing experience in their brain,” [neuroscientist Jimo Borjigin] says. “They see lights and then they describe the experience as ‘realer than real.’” She realized the sudden release of neurochemicals might help to explain this feeling. … Most of the patients interviewed [for a study at a hospice center], 88 percent, had at least one dream or vision.

One reader says of Dear’s ostensibly morbid piece (“What It Feels Like to Die”): “The article is comforting in a way I did not anticipate.” Another reader agrees:

I kissed my dad goodbye on the forehead right before he died. He smiled briefly. So, this article was some comfort in maybe explaining that smile of his.

This next reader also lost her father:

I remember when my dad was dying, and my mom forbade any of us from telling him that he was dying. I thought that that was terribly selfish on her part, and I told my husband that if I were dying I would want to know.

When my mom passed away, she was “treated” to the experience of my sisters bitterly arguing as to who was the favorite. (I knew I wasn’t and just held her hand.) My husband got my sisters to stop. Finally, the doctors came in and actually said she had permission to die … Mom was like that; you had to have permission in her mind for everything.

My dear husband is gone now, and I just hope that when I go, I’ll be thinking of him.

That reader’s line—“if I were dying I would want to know”—prompted a question in my mind I’ve long answered in the affirmative: “Do you want to be awake for your death and know it’s coming?” The conventional wisdom says most people prefer to die in their sleep, but, as long as there’s no intense pain involved, sleeping seems like a disappointing way to experience one of the most profound parts of life—it’s ending. And whenever I think of that question, I’m reminded of these lyrics from Björk’s “Hyperballad”:

I imagine what my body would sound like
Slamming against those rocks

And when it lands
Will my eyes be closed or open?

Would you rather be sleep or awake? How exactly would you prefer to die? What’s the ideal situation? Email if you’d like to share.

Back to a few more stories from readers regarding the death of a loved one. This memory is particularly poignant:

Twelve months ago, my 33-year-old daughter Phoebe began to die from metastatic melanoma. Over the next 10 weeks at a hospital in Melbourne, she went through each of the experiences outlined in Jennie Dear’s article. During this time, Phoebe asked her nurse how would she know when she was about to actually die. Donna told her that something would happen and she would know—both vague and oddly specific, but Phoebe was satisfied.

A week before her death, having gotten her pain under control, Phoebe was at home to say goodbye to her animals, clean out her cupboards, and give away her possessions. She was standing in the yard throwing a ball for the dog when she suddenly sat down, as I watched from the kitchen. I’m sure she realized as she collapsed to the bench that her time had come. I doubt that there could be a lonelier moment in a person’s life.

She didn’t speak again. Her hearing and hand gestures reduced over a few days to squeezing, then nothing but breathing quietly. Her brother-in-law, who was with her at the end, said she simply stopped breathing.

Each person’s death is different, so I found Dear’s article comforting in a way I did not anticipate.


One more reader for now:

My father was put into hospice, and all his meds were stopped. He “recovered” and lived another six months. After they “kicked him out” of hospice, he and I spent a lot of quality time together. When the end came, he was ready even though he could no longer speak. The hospice nurse came and looked at all the meds and found that while we still had the liquid morphine, we no longer had the Ativan, so we ordered a stat delivery from the pharmacist.

Giving morphine to a dying person can feel a lot like murder, and listening to the death rattle is more distressing than listening to a crying infant, but I think that the death experience is far worse for the person attending the death than for the one who is dying.

The Ativan was given to my father late in this process, but that was the drug which provided him with joy and relief. Shortly after he received the drug, I believe I witnessed him greeting his mother who had died 40 years ago.

My father then developed what is called a Cheyne-Stokes respiration; he would breath rapidly for a few minutes and then stop breathing. He resumed breathing like clockwork at 65 seconds from his previous breath. This lasted for hours. His last breath sounded much like a laugh, and I thought it was his way of saying good-bye.

I thought the event would be gruesome, but it was a special bonding experience which has helped me to reduce my fear of dying.

Complete Article HERE!

Take control over the end of your life: what you need to know about advance care directives

By Nola Ries

Take control over the end of your life: what you need to know about advance care directives.
Take control over the end of your life: what you need to know about advance care directives.

Many agree on the factors contributing to a good death. People want to be treated with dignity, have relief from pain and, as much as possible, to control what happens to them.

Advance care planning is one way to exercise control. The process involves discussing and expressing preferences about the kind of care you would or would not want in a situation where you lack the mental capacity to make decisions.

As part of this process, you can write an advance care directive – a document that can be legally binding. It states your views and instructions about health care and other personal matters.

You can also appoint someone you trust to be you health care decision-maker. Despite its usefulness, only a small number of Australians (around 14%) currently have an advance care directive.

Why have a directive?

Studies show at least one-third of patients receive non-beneficial treatments at the end of their life, including tube-feeding and surgical procedures when there is little hope of the patient getting better. This is despite many older Australians saying they do not want medical interventions to keep them alive when their quality of life is poor.

With a good advance care directive in place, people are more likely to have their wishes for care respected. People with a directive are also more likely to experience fewer unwanted medical interventions, less likely to be moved from their home or community care to a hospital, and less likely to die in a hospital.

A directive means you can tell people your health care wishes so your choices can be legally respected.

If a patient who doesn’t have a directive is seriously ill and unable to communicate, doctors will consult with family or others close to the patient about their care. Family members and caregivers often experience stress and guilt when making decisions for a loved one at the end of their life. These decisions are made easier if they are guided by the values and preferences expressed in an advance care directive.

Are directives legally binding?

In Australia, the legal context for advance care planning is complicated as every state and territory has its own laws, but they have common principles. For instance, each law respects the right of an adult who has mental capacity to plan in advance for their health care.

There are two kinds of directives: statutory and common law. A statutory directive means the person completes a document that meets specific government requirements – such as this one in South Australia or this one in Queensland. This week, the Victorian government introduced a bill to parliament to make advanced care directives legally enforceable.

New South Wales and Tasmania don’t have statutes that create forms for advance care directives, but people can make common law directives. This means they can state their health care wishes in their own way and they can be legally respected.

In 2009, the NSW Supreme Court ruled that a hospital had to follow the medical instructions a man had recorded in worksheets. The man was hospitalised with serious illness, lost consciousness and went into kidney failure. The court said the hospital had to respect the written instructions that refused blood transfusions and dialysis.

States that have statutory advance directives may also allow a person to make a common law directive. So it is not always necessary to use a government form. People interested in making an advance directive or appointing a health-care decision-maker should look up the rules in their state or territory; there are some good websites with accurate information.

What’s in a directive?

People often think of an advance care directive as a document that refuses consent to specific treatments. For example, you can specify you don’t want CPR or tube-feeding if you have a life-threatening medical problem with little chance of recovery.

This is true. But directives can also be used to document your values, say what quality of life means to you and specify if you have spiritual or lifestyle beliefs you want respected. For instance, you can write down things that would help create a home-like environment if you have to be cared for in a facility, such as music you would like to listen to or treasured items you would like in your room.

A person might complete an official statutory form to appoint someone as their health-care decision-maker, then attach a statement of values.

A statement of values, wishes and preferences can be helpful for appointed decision-makers and for care providers. Websites such as My Values can help you consider issues about medical care and dying you may not have thought about before.

What else do I need to know?

You are encouraged to review your advance care directive, and other legal documents, to make sure they are up-to-date and reflect your current wishes and instructions.

It is also vital to share your directive with your health-care providers, appointed decision-maker (if you have one), family members and other loved ones who may be called on to help make decisions. Doctors cannot follow a directive if they don’t know it exists.

There is no mandatory central registry in Australia to make sure doctors have access to directives when needed. But people with an electronic health record – known as My Health Record – can include their advance care directive information there.

Advance care planning is typically promoted in health-care settings. But some people are more likely to talk to a lawyer than a doctor about their health wishes. This often happens when a person seeks legal help on other aspects of future planning, such as writing a will or appointing a financial decision maker.

I have argued that legal and health professions can work together more effectively to help their clients plan for their future health care. Doing so promotes their clients’ interests and autonomy. It makes sure people’s values and wishes are known, even beyond a time when they can no longer speak for themselves.

Complete Article HERE!

A touching and humorous look at death in ‘Last Rights’


From left, Sharon Ohrenstein, Ana Maria Larson and Ann Gundersheimer in “Last Rights,” a documentary play about death and dying with dignity at Florida Studio Theatre.

At some point, most of us give at least a little thought to the concept of death, whether our own or a loved one’s. Though we may not want to think about the end of life, it is inevitable, hopefully later rather than sooner.

With a mix of famous quotes, quick sound bites and a few touching stories, the new play “Last Rights” encourages audiences to think and talk about death a lot more. In fact, the point of this original Florida Studio Theatre documentary theater production is to stimulate conversation as part of its ongoing “For the Ages” project exploring issues surrounding aging.

As one character says, we know a lot about the birthing process, but few of us actually know what happens at death. There’s a lot to learn, and you get some lessons in “Last Rights.”

Assembled and directed by Jason Cannon from more than 100 interviews with area residents, including caregivers, hospice workers, journalists and loved ones of those who died, the production is presented in Bowne’s Lab as a reading of sorts. The six cast members stand with scripts in hand ((and)) when it’s their turn ((they)) ((delete-to)) share a story or offer one-line thoughts.

“People breathe much longer than they’re alive,” one man notes, while another says, “If we understood death better, we’d be less afraid.”

From left, Michael Kinsey, Mark Konrad and Bob Mowry share stories from area residents in the Florida Studio Theatre production of “Last Rights.”

Considering the subject, the play is surprisingly humorous, as it touches on everything from the many euphemisms for death to famous last words, fear of death, dying with a sense of dignity during treatment for an illness, what we expect after death, grieving, and how survivors learn to move on in their lives.

Three widows complain about how their friends avoid them because they don’t have the words to express their sympathy and other feelings.

Get over it, and call.

The actors generally play recurring characters, like Bob Mowry’s compassionate, well-informed and experienced hospice worker who shares some personal stories and important legal information about patients’ rights to refuse care. Ann Gundersheimer is grounded and moving as a gerentologist ((sp?)) providing insights into aging and death. Mark Konrad plays a man who has one year left to live and wants to make the most of it. (Did the year end before the show ((?)) ((B))ecause the character disappears after a while) Sharon Ohrenstein plays an enthusiastic home health aide and Ana Maria Larson is extremely moving as she talks about taking care of her grandfather((,))who wasn’t ready to give up on life.

Michael Kinsey has the strongest through line as a gay man who shares memories of his late first husband and how they mesh into the life he has with his second. But he worries about what happens in the afterlife. Husband No. 1 told him, “I’ll see you on the other side.” ((W))hat happens when he shows up with husband No. 2 ((?))

The play is divided into five sections over two acts that run longer than needed without more compelling story arcs, like the stories Kinsey shares. There is no real narrative, just groupings of ideas and thoughts built around specific topics. There’s a nicely staged moment at the end of the “Any Last Words” section that ((would have provided ((Delete-provides)) a nice finale to the first act, but there’s still another section to go.

The cast, however, keeps us interested, and the play raises a lot of issues that are certainly of concern to the older FST audience and should be of interest and thought for those decades younger. “Last Rights” does have the ability, in an easily digestible way, to make you consider the possibilities of how you want to go.

Complete Article HERE!