Death’s midwife helps terminally ill Canadians end their lives

By Robert Cribb

Reaching beneath a desk in her home office, Ruth von Fuchs pulls out a white plastic box containing a collection of tubes, valves and microwave turkey roasting bags.

This is her death kit.

With the blasé patter of an airline attendant explaining the protocols of oxygen mask use, the 71-year-old retired librarian removes a microwave bag and pulls it over her head, her face shrouded beneath clear plastic, her features blurring, her graying bun compressed into a soft helmet.

Slowly, her fingers begin to pinch a seal around her neck using Velcro strips she attached at the open end of the bag.

Her voice muffled and faint, she points to the spot where a tube is to be inserted.

“I would probably use helium,” she declares, deadpan. “A few deep breaths and you fade off.”

Von Fuchs is death’s midwife.

On four occasions, she has held the hands of terminally ill Canadians as they lived out their final wish: to pre-emptively end their lives with someone, anyone, there to provide humanity as they breathe their last breaths.

“No one wants to die alone,” says von Fuchs. “Most people just want someone there to hold their hand.”

She sits with people suffering with incurable diseases or perhaps their family members who wish to be with them if they take their own lives. She will pull out the visual aids, reveal her collection of items and explain how each works.

Down the road, when she decides the time is right, she will pull the kit out from under her desk one last time for her own do-it-yourself death, she says.

Whether von Fuchs is breaching Canadian criminal law prohibiting “assisted suicide” is a question mired in the complexities of legislative language and the mysteries of human desire.

Here’s what is clear: an underground movement of death facilitators has emerged to help Canadians execute their final wish despite threats of arrest and imprisonment.

Clandestine “hastenings” — self-planned deaths generally performed in private homes using drug cocktails or makeshift helium hoods — are a quietly growing phenomenon.

And experts say that growth can only continue as the country’s population ages and political intransigence continues to deny legalization of euthanasia and assisted death.

Interviews with six Canadians planning their own deaths reveal a perspective many of us can’t understand.

It is a state of mind guided by the inevitability of a physical deterioration so brutal and terrifying they have reached a desperate but unshakable conclusion: that surrender into final sleep is preferable to a descent into anguish.

Reaching that point comes after thoughtful — and often agonized — reflection, they say.

Once they are there, Canadian law makes it all the more complicated for them to follow through.

Finding someone to help means subjecting friends, family members or physicians to the possibility of a prison sentence.

Von Fuchs and other right-to-die believers have mapped out a legal grey area rife with life-and-death questions the courts and Parliament have yet to clearly answer.

At its core is this: who has the right to choose when and how we die?

“I think its one of the most profound issues of human rights of our time,” says Jocelyn Downie, a leading Canadian health law expert at Dalhousie University and author of Dying Justice: A Case for Decriminalizing Euthanasia and Assisted Suicide in Canada.

“I think we could be at the very moment of transformation.”

Public debate has re-emerged of late over Canada’s criminal prohibition on assisted death and euthanasia, with some prominent calls for legalization of assisted death in Canada from physicians, lawyers, politicians and ordinary Canadians.

Meanwhile, the federal government and most medical bodies remain vehement in their opposition to legislative change that would open the door to assisted killing.

All of that public debate has ignored this truth: despite criminal laws and social taboos, many Canadians are already choosing to end their lives with assistance from friends, physicians and, increasingly, a network of volunteer death supporters.

No one knows how many are secretly planning and executing their own deaths each year with support from others.

But those who bear witness say clandestine deaths are an increasingly attractive choice for terminally diseased Canadians who can no longer wait for legal authorization to end their lives.

“It’s just right that people have the opportunity to be autonomous and self-determined and less subject to the odious constraints of a state that would say, ‘We’ve spent so much time fighting death that we confer upon you a duty to live,’ ” declares Russel Ogden, a Vancouver criminologist who attends hastenings for Canadians who choose to end their lives.

The act of comforting the afflicted by helping them breathe their last breath is a tightrope walk performed in the shadows.

Generally executed in private homes, the process is legally complex and can be medically dicey.

Those who wish to take matters into their own hands must go about the grim process of illegally importing lethal drugs, in some cases from foreign websites, or piecing together equipment from items purchased at grocery or hardware stores.

Supportive death hasteners tend to operate quietly behind the scenes. All are nervous about attracting the attention of authorities.

In interviews, eight Canadians who have attended hastenings, ranging from an atheist physician to a retired United Church minister, were all careful to say they “support” — not “assist” — people they call “clients.”

The practical distinction may be subtle.

But it holds tremendous legal consequence.

While “assisting” a death is a criminal offence, “supporting” appears to be a sufficiently muddled concept to escape prosecution.

Police have questioned most of the eight, but no charges were pursued.

For those who wish to die, that provides little comfort.

Inside the system’s shadowy cracks, some Canadians attempting suicide fail in ways that leave them in worse condition than they were.

Some refuse medical treatment that would ease excruciating and intractable pain.

Others seek out people like Ruth von Fuchs.

Ask discreetly in right-to-choose circles and you’ll eventually hear about von Fuchs.

Visit her on a quiet west-end Toronto street and you’ll discover an elegant woman, her still-youthful face framed by a dramatic sweep of silvery hair pulled into an updo.

She’ll take you upstairs to a small second-floor office nook where she sits surrounded by overstuffed shelves containing books with titles such as A Good Death, Last Rights and ThePeaceful Pill Handbook.

At various times, two tabby cats and a couple of American Eskimo dogs will sniff at you as she speaks for an hour uninterrupted about the art and politics of self-prescribed death and how Canadian laws designed to protect life have created anguish.

“The knowledge that tomorrow will not be better than today — and likely worse — that is a type of incurable misery,” she says of a belief reinforced while she watched her partner of 21 years suffer through a long and wrenching battle with cancer in 2009.

“He didn’t give up soon enough. He had a failure of realism. I don’t want to go through a period of increasing decrepitude. I don’t want to lose my ability to know when to fold.”

Like those who share her beliefs, von Fuchs displays none of the discomfort many of us have with death.

“You can buy the helium tanks used for blowing up balloons at most Toys R Us stores,” she advises practically. “I’m a fan of using all the available technology.”

Things can go wrong, of course, when you’re relying on discount department store items to execute your final wishes.

“It’s tricky,” she warns. “You have to practise.”

Von Fuchs was recently contacted by an 87-year-old Ontario woman with multiple health issues who wishes to “go while the going is good.”

In a rare twist, the woman was referred to von Fuchs by her doctor.

“That doesn’t happen often,” she says. “But there are doctors who understand and want to provide this service to patients who need it and want it.”

Hasteners typically hold a view of death sanitized of religious or spiritual meaning.

Von Fuchs is a lifelong atheist who rejects the cultural celebration of courage in the face of disease.

She has no children to be impacted by her choice.

“My father died when I was 10 and I think that kept me from thinking that death was distant and out there,” she says. “I was made unable to have that delusion.

“People say you should always be hopeful. That’s foolishness. Just as there are unjustified fears there can be unjustified hope. Neither is good. We let people horrified by hopelessness endure a type of torture.”

The question of assisted death and euthanasia is more charged today than perhaps at any other point in Canadian history.

Public opinion polls show strong support for their legalization.

In a recent groundbreaking decision — now under appeal — a B.C. Supreme Court judge found in favour of Kelowna-area woman named Gloria Taylor, who was seeking the help of a physician to end her life in the face of her ALS (she died earlier this month of natural causes).

And both a Quebec commission and a Royal Society of Canada expert panel recently urged politicians to provide greater protections for Canadians who wish to end their own lives.

Quebec is promising to establish more lenient provincial laws that could give doctors and their patients a degree of latitude that could result in a form of assisted suicide without prosecution.

“We’ve never been so close to a permissive regime,” says Downie. “If Quebec goes through with what it has said it will do, that will be transformative for Quebec, and then I think you’ll see a domino effect across the country. That could be the pivot moment.”

But resistance also remains vigorous.

The medical profession and successive federal governments have firmly rejected calls for change, affirming that assisted death is both unethical and criminal.

When a private member’s bill proposing to legalize assisted suicide was introduced in 2009, it was overwhelmingly defeated by a vote of 228 to 59.

Anti-euthanasia organizations also hold powerful voices in the debate, arguing that legalization of self-engineered deaths will create a slippery slope that could end with vulnerable Canadians being pressured by their families or their physicians to choose assisted death.

“While I can cause my own death, the question is whether there should be a line in the sand for someone else causing my death,” says Alex Schadenberg, executive director of Canada’s Euthanasia Prevention Coalition.

“Our answer is, ‘Absolutely.’ You can’t always be assured you’re safe when someone else has influence over your death.”

Schadenberg, who has an autistic son, was drawn to the anti-euthanasia movement in the late 1990s, inspired in large part by raging public debate over the death of Tracy Latimer at the hands of her father, Robert.

“What made me particularly concerned was the vulnerability of persons with disabilities and the growing public tolerance for euthanasia and how it might impact people with disabilities.”

Latimer was released from prison in 2010, a decade after the Supreme Court upheld his conviction for assisting in the death of his severely disabled 12-year-old daughter.

It remains an object lesson of the kind of high-stakes legal fate that Canada’s right-to-assisted-death supporters are trying to delicately negotiate.

But more than ever before, advocates across the debate seem to agree we have reached a defining moment on the question of assisted suicide.

And the emergence of a death-hastening movement is perhaps the most conspicuous sign of the underground rebellion.

“The culture is definitely changing on this,” says University of Toronto bioethicist Kerry Bowman. “If people want this service and people are willing to provide it, and it’s done in an objective way, it’s coming from the people. There’s no way that any of this could be part of direct health-care system. It would be too much of a conflict from an ethical point of view.”

Vancouver-based Ogden has been researching assisted death as a criminologist since 1991 and began pushing for legal reform with the birth of his Farewell Foundation last year.

Behind the political advocacy, he’s also quietly performed the far more ethically thorny work of supporting those who can’t wait for the legal and political debate to play out.

He has attended the deaths of five Canadians and an American who decided that suicide was preferable to a life lived with incurable disease.

Each was a relative stranger to him — no childhood bonds or family ties. He generally gets to know them over a series of conversations spanning up to a year prior to their death.

He accompanied them to a place of their choosing, in one case a Swiss medical clinic called Dignitas that specializes in legal assisted suicides.

In each case, he watched as they swallowed a cocktail of drugs or inhaled helium they had independently acquired to complete the deed, he says.

In the moment, he was a quiet presence, a witness, observing as their final breaths gradually faded into silence.

When it was over, he typically picked up the phone and called the authorities to report the death.

“They’d like their deaths to be documented for what they are to law enforcement and the coroner,” he says. “We’re prepared to do that.”

After studying assisted suicide for two decades, he believes what he is doing is both legal and desperately needed in Canada.

Nobody, including police, seems to be able to prove otherwise.

“There’s no obligations for citizens to live lives that they believe aren’t worth living. We’re not bypassing any law. We’re trying to act within it.”

Does counselling someone in the methods of committing suicide qualify as assistance? What about providing the equipment or medications?

Ogden will do neither, he says.

But how, say critics, can death hasteners like Ogden ensure medically safe procedures or assess the mental capacity of those vowing to end their own lives as lay people without medical or psychological training?

According the Farewell Foundation’s procedures, those seeking assistance meet with a support team to ensure they are capable of making the decision.

“If a member’s capacity is in doubt, greater scrutiny and additional consultation is necessary,” the policy reads. “The support team must take care to ensure that a decision for self-chosen death is informed and voluntary.”

The methods chosen for those deaths must be “humane and non-violent” in order to “prevent impulsive acts.”

Ogden says not everyone who seeks supports receives it.

“I’ve looked at situations where people were planning their death and told them, ‘If this is the way you’re planning to end your life, I wouldn’t be willing to attend.’ What we are advocating is people taking advantage of humane, non-disfiguring methods and that they do their own research on how to carry out the various steps. It’s about personal responsibility.”

If the foundation agrees to attend at a death, at least two members will be present at the appointed time and place, and its policies require reporting to the coroner.

Ogden concedes that his members are not trained professionals.

“We don’t see a need for training because the person doesn’t need to know how life is ended because they aren’t going to be involved. The core requirement is to sit on your hands. It would be a violation of the law to intervene. If someone is struggling to end their life and you step in and finish the job, that’s murder.”

No matter how controversial it may be, a death wish appears to be worth the risk for many Canadians.

Five members of the Farewell Foundation have taken their own lives since August, says Ogden. While each consulted with him on their plans, they ended up committing suicide without his assistance.

Toronto-based Dying With Dignity, a registered charity that supports Canadians on right-to-die issues, receives more than 200 calls a year, many from people seeking information about how to end their own life.

Wanda Morris, Dying With Dignity’s executive director, says the experience of bearing witness to a death hastening last year has only reinforced her convictions.

“Just to witness the gratitude this person had . . . I really get that there is some suffering that only death can end,” she said.

Morris was drawn to this work in the aftermath of her father-in-law’s chilling death.

In the end, the dementia that stole his cognitive abilities also made him violent.

One day, he struck out at his daughter, who was taking care of him, hitting her across the face, she says.

Then came the nursing home and the restraints.

“My husband said, ‘You can’t ever let something like that happen to me,’ ” she recalls, wiping her eyes. “I love my husband dearly, so I decided I had to get informed and see what our choices are.”

Those choices remain limited in the mainstream health-care system, which views the work of amateur death hasteners with suspicion.

When Morris recently approached the Ontario College of Nurses seeking help in finding nurses interested in helping clients end their lives, the response was definitive.

“The (College of Nurses of Ontario) has stated that euthanasia and assisted suicide is illegal, and there is no role for nurses in facilitating these activities,” the college responded in a letter of response to Morris.

Linda Marie Pacheco, a palliative care nurse in Toronto, wanted to apply for the job.

But she was told by her college that doing so would risk her licence, even if she wasn’t hired as a registered nurse.

“They’re saying no matter what job I do, if it’s in the field of health care, I have to uphold he rules of the college,” she says. “That surprised me.”

After two decades of caring for patients with intractable disease, she was drawn to the notion of educating people about their options, providing alternatives, ensuring they don’t make botched attempts at suicide that could leave them even worse off.

“I can’t stand by and let people suffer,” she says. “I see these people as angels of mercy to help alleviate suffering. I’ve been at the bedside of many people in anguish and it’s horrible. I got excited about being able to give these people the education they need and respect their rights as a human being.”

Ogden’s work as a death facilitator has led to police questioning on seven occasions, he says. He was subpoenaed three times to court (in 1994, 2003 and 2004).

Following another death he witnessed in 2007, Vancouver police officers “swarmed the area” and took him into custody, he says.

But they closed the file without laying charges.

“There’s no offence in attending a suicide,” says Ogden. “While it may be repugnant and ghoulish, it’s not against the law.”

He has also paid a high professional price for his work.

As an academic studying suicide and end-of-life issues in part by observing them, Ogden ran into problems with Kwantlen Polytechnic University in B.C., where he was a professor.

In 2006, the school withdrew approval for a research proposal he submitted, citing legal implications.

Today, he remains listed on the school’s website as a faculty member on leave and he is included in a B.C. public salary disclosure list as having earned just over $85,000 last year.

But he says he hasn’t been scheduled by the university to teach any courses since 2008.

A Kwantlen spokesperson said the professor is conducting “independent research.”

“I miss teaching,” says Ogden, “and not doing it is challenging to the identity of a university instructor.”

Ruth Von Fuchs is eating porridge with milk and brown sugar as she faces out toward her backyard, summer morning light bathing her in a luminous glow.

She’s imagining the future.

“If I do live long enough to see the law changed, I will have a death day party,” she finally says, still staring out the window as if picturing her guests standing amid the greenery below.

Her brother and her sister-in-law would come, she says. She’d ask the contractor working on her home renovations.

She’d also invite her nephew to come with his video camera and use the occasion to create an instructional video for others planning a home death.

She would want company. People to hold her hand.

But they won’t come if Canadian laws remain unchanged, she predicts.

“When it’s surrounded in a kind of criminality, people just want to run away.”

There’s a long pause, her eyes still fixed on the backyard.

“Life is not fair. This is not a beautiful world. Sufferers should have a choice.”

Complete Article HERE!

Death is part of our human experience

There are times when it is better to “let nature take its course”.

By SALLY FOSTER-FULTON

The debate around assisted dying is undoubtedly a difficult and sensitive one. However, Nelson Jones’s recent blog, conflating as it did two very different issues, served only to muddy the waters.

In the piece, Jones sought to argue that because, in certain situations, a clinical decision is made by medical personnel not to attempt resuscitation of the patient, this is essentially equivalent to the medical profession making the decision to end the life of a vulnerable person. It would be more honest, Jones argued, to allow the choice of when their life should end to be made by the patient.

There can be little doubt that medical technology is now such that we can artificially prolong the lives of people through interventions which are at times inappropriate. However, in our death-denying culture, there are times when we need to remember that death is a part of our human experience, and that not every death is the result of a medical failure. There are times when the better decision is to let go, to step back and “let nature take its course”. This is the purpose of the “do not attempt resuscitation” (DNAR) decision: that further medical intervention would be futile and of no benefit to the patient.

However, the withholding or withdrawing of medical treatment differs fundamentally from the deliberate ending of life. The Church of Scotland is active in many projects offering care, comfort and support to the vulnerable in many practical ways. We therefore find the prospect of legislation allowing assisted dying to be deeply concerning, as it has the potential to undermine focus on the care and comfort of all as they move through the last stages of life- especially those who are placed in a vulnerable position as a result of age, incapacity or other circumstance.

While personal autonomy is indeed an important issue, it is a dangerous fallacy to believe that a person can act independently of all others, with their actions having no consequences for anybody else. Interpersonal relationships are vital: life is lived and death experienced as part of community. Assisted suicide cannot be a personal choice because it will inevitably effect everyone, and how tragic if those most vulnerable in our communities begin to feel that their lives are somehow less worth our resources. What a tragically bleak view of human life- and how far removed from the call of the church to show love and concern, compassion and support for all around us.

Death, as a natural process, cannot be avoided: despite the inevitable sadness involved in saying farewell to a loved one, emphasis should be placed on ensuring that all participants in the process experience as fulfilled and comfortable a final journey as possible.

We would emphasise the need for all aspects of care to be improved; there is concern, however, that assisted dying legalisation will undermine, rather than enhance, other aspects of end of life care and the manner in which society values every human being. Clearly it would be a step too far if vulnerable patients felt pressured to opt for assisted dying because of a lack of resources to give them an acceptable quality of life in their last months.

In common with many people of faith, the Church of Scotland would affirm that the worth and dignity of every human life needs to be emphasised and celebrated. Indeed, the Gospel of Jesus Christ which the Church of Scotland seeks to live out emphasises the value and worth of all human life, no matter the circumstances. Any legislation to bring about the deliberate ending of a human life would be a sea-change in how we perceive one another. Society places a prohibition on the killing of others (because we understand the profound commonality of life): this is a line which we must not cross.

Complete Article HERE!

A push to encourage end-of-life discussions

By Kay Lazar

Rabbi Howard Kummer spent years guiding others through wrenching life-and-death decisions. As a chaplain at Newton-Wellesley Hospital, he ministered to patients tethered to life support machines, and would later tell his wife he never wanted to be kept alive that way.

But he did not get around to discussing his feelings with their three grown children, even after he was diagnosed with a brain tumor.

Then he had a catastrophic brain hemorrhage that left him near death, and his children were unprepared. They hesitated when a physician suggested stopping aggressive treatment.

“I knew what he wanted,” said his wife, Nancy. “I had had this discussion many times with him, but the kids hadn’t and they weren’t ready to let go.”

With death and dying, most Americans engage in a conspiracy of silence, surveys show, failing to discuss their final wishes until it is too late. A new Massachusetts-based coalition aims to change that.

Called The Conversation Project, the national campaign encourages open and honest discussions among families and friends about how they want to live life at the end, so that their wishes will be followed.

There have been other smaller-scale efforts to spark discussions among families and with doctors, but The Conversation Project has big financial backing from foundations and big names, including Dr. Don Berwick, former head of the Medicare program, and former Boston Globe columnist Ellen Goodman, a winner of the Pulitzer Prize.

The effort also has a partnership with ABC News.

A “starter kit” on the project’s website helps jumpstart end-of-life conversations. It asks visitors to answer this question: “What matters to me at the end of my life is _____.”

It suggests gentle ways for people of all ages to prompt a conversation with family or friends, by saying, for instance, “I need your help with something.” And it describes issues for people to think and talk about, from the level of medical interventions they might want, to a primer about legal documents that stipulate a person’s wishes.

The project was cofounded by Goodman, who spent a career communicating other people’s stories but neglected to have a detailed conversation with her mother about her preferences.

“I knew my mother’s attitudes in the most general sense,” she said. “But I never thought to ask my mother, for instance, where on the continuum are you, about being afraid of not getting enough care and getting too much care.”

Goodman said that because they had not had those discussions before her mother was incapacitated from dementia, she was torn while making complex decisions for her medical care.

Goodman’s mother died six years ago.

The project’s website suggests people have an ongoing conversation, not one that happens in one sitting. Writing a letter can be one way to start the conversation.

“DON’T PANIC — IT’S OK,” is how Karen Boudreau, a family physician, started a hand-written letter to her family when she became involved with The Conversation Project during its formation.

At the time, she was a senior vice president at the Institute for Healthcare Improvement, a Cambridge organization that is collaborating on the project.

Boudreau’s letter advises her family members to not worry or feel guilty if they have to make decisions for her care that they had not previously thought to discuss.

“If you’re faced with a snap decision, don’t panic — choose comfort, choose home, choose less intervention, choose to be together, at my side, holding my hand, singing, laughing, loving, celebrating and carrying on,” wrote Boudreau, now chief medical officer at Boston Medical Center’s HealthNet Plan, and, at age 51, in good health. “I will keep loving you and watching you and being proud of you.”

The Kummer children, including one now a rabbi herself, ultimately chose less intervention, too, after their 67-year-old father’s brain hemorrhage.

They signed a form to not have him resuscitated if his heart failed.

“In a very short time, we put together a nice little ceremony,” said Nancy Kummer, now 81 and living in Dedham. “One of them talked to him, one sang songs to him, one read some psalms to him, each in his or her own way, and then we said our goodbyes.”

Yet 13 years after her husband’s death, Kummer admitted that she has not had an in-depth conversation with her children — now ages 52, 51, and 47 — about her end-of-life wishes.

Nancy Kummer, a former social worker, used to counsel people with terminal illnesses and now lives in a retirement community where, she said, she is “surrounded by increasing fragility and illness and vulnerability so it’s in my face all the time.”

Still, she is having a hard time starting that conversation.

“There is a human tendency,” she said, “to postpone uncomfortable or unpleasant tasks.”

Getting Americans to put their end-of-life wishes in writing has not fared much better.

More than three-quarters of those surveyed said it is important to express their written preferences, yet fewer than 1 in 4 have done that, according to a recent survey by the California HealthCare Foundation.

But momentum may be building. Since its launch in October 2008, there has been steadily growing traffic on the website Engage with Grace, an online campaign aimed at prompting end-of-life discussions, said cofounder Alexandra Drane, who runs a Danvers software company focused on health care.

Her firm particularly seems to be hearing from a lot of baby boomers who have had bad experiences with decision-making in their parents’ deaths because they failed to have meaningful conversations beforehand, and now want to help others avoid that mistake.

“We are coming across more friends, and kindred spirits,” Drane said, “who have decided this will be their mission.”

Complete Article HERE!

Take Control Of Life, Death

By Dr. Aroop Mangalik

If you want to be comfortable, happy and be with your family and friends when you are facing a serious illness or are likely to die in the near future, you need to take control.

In recent decades, there has been what some have called “medicalization of death.” There have been many advances in medicine and a lot of people are living healthier, longer lives.

But ultimately, we all have to die.

Medicalization of death has occurred, to a significant degree, because we – society, patients and doctors – have not taken into account the fact that there are limits to life and that medical interventions can only do so much.

Understanding this reality is a major step that must be taken to get the best outcome for the patient.

How does one understand this? How do we take control of the situation?

The knowledge you need to get will necessarily come from your medical provider. The best decisions are made by having the facts – available treatment options and the likely outcomes.

Ask your provider about the nature of the illness and what is expected without any treatment.

The next steps will be to get a clear picture of what treatments are available. You should be able to get some idea of how likely it is that the treatments will improve the outcome for you.

This includes information on previous success and failures with available options. At least try to find out if the treatment is “very likely,” “likely,” or “not likely” to help.

Equally, important, you need to know what will be the side-effects of treatment. Will the treatments be harsh or mild, will they last for a short time or will they be persistent.

The cost in dollars is also something that must be considered. In this day of uncertainty we cannot ignore that factor. Many families face bankruptcy because of “long shot” medical treatments.

Once you have the information, you need to decide. It should be your decision based on the best information and input you can get.

If you feel that the treatments available to you are not going to help you achieve your goals, you can refuse those treatments. No one can force you to have a treatment you do not want.

If you choose the path of not taking the treatment, the focus changes from controlling the disease to making your life as comfortable as possible.

The medical team will work with you to control your symptoms. They will help you with pain control, nausea, vomiting, shortness of breath or difficulties in performing day-to-day activities. They will work with you to get the best out of life for whatever time you are alive.

There are many types of experts who are trained to help you. They have overlapping roles and expertise and they work together.

They are referred to as Palliative Care Specialists, Hospice Teams or Symptom Management experts. They all have the goals of making your life better and focus on you.

They also help you and your family so that you die comfortably and with dignity with your family and friends around you.

In certain circumstances, despite their efforts, living may feel like a burden. There are other options that can be utilized.

This is the option of you willfully ending your life at the time you choose. This option has been given a number of names. Physician-assisted death (and) assisted suicide being two common ones.

The option is currently available in Oregon and Washington State. In New Mexico, we are waiting for the courts to decide if such an action would be legal.

In summary, when faced with a serious illness, you should take control of your life and decide what is best for you.

Complete Article HERE!

A DNR Tattoo? Really? Great Teaching Image for Geriatrics or Palliative Care

by: Alex Smith

Perhaps you have said, or heard someone declare, “I want DNR tattooed across my chest!”

Well, someone actually had it done. See this image in JGIM of the tattoo and the unusual story behind it. In this case, the DNR tattoo was the result of a lost bet in a drinking game – bad idea jeans – the patient actually wanted to be full code!

In an accompanying editorial, Bernie Lo and I describe the problem with actually tattooing DNR across your chest. As we say, the idea is intuitively appealing, but flawed as policy.

This could be used a teaching image about respecting individuals’ rights to avoid resuscitation. The idea is to provoke a thoughtful discussion. Questions for trainees could include:

  • What is behind the idea of the DNR tattoo? Why would someone say that, or do it?
  • Imagine you are seeing a new patient who arrests in front of you. Preparing to do CPR you see a DNR tattoo on the chest. How do you respond? Why? Should DNR tattoos be respected?
  • What can we do to protect the interests of people who really do not want to be resuscitated?
  • Should we as a society put greater ironclad protections in place for people to irrevocably fix their code status at DNR? What are the risks? What if someone codes from anaphylaxis? Chokes on some food in front of you?
  • What do you think about allowing leeway or flexibility in decision making? In all cases? Giving the surrogate leeway? The clinician? Do the advance directive forms or POLSTs you use allow for leeway? Should they?
  • What do you think about Ulysses contracts? (Then Ulysses said, “Eurylochus, come quickly! Tie me to the mast, for I shall hear the Sirens song and live!”). Caringadvocates offers such documents (run by frequent GeriPal commenter Stan Turman). Example: do not give me food or water when I have advanced dementia, no matter what I say or do.

Feel free to share your teaching experiences in the comments. I think the geriatrics and palliative care communities really appreciated the discussion about how to use this video from a previous post as a teaching tool.

Complete Article HERE!

Advance Directives are the beginning of care, not the end

Jerome Groopman, MD, FACP, and Pamela Hartzband, MD, FACP

One of the most difficult decisions that patients, families and physicians face involves end-of-life care. The advance directive or “living will” has become an accepted framework for patients to delineate their own preferences about what treatment they would or would not want when faced with a life-threatening disorder. But it was not always this way.

In the past, physicians and families often shielded those with potentially fatal illnesses from candid conversations about dying. The doctor or a family member would make decisions to sustain or stop treatment, typically without consulting the patient. This has changed over the past three decades following a landmark report entitled “Deciding to Forgo Life-Sustaining Treatment” issued by a presidential commission in 1983.

Advance directives have become increasingly used to guide patients and family members. The underlying assumption is that a great deal of the stress and complexities of making decisions about therapy will be solved if the patient specifies his or her preferences in advance. But considerable research has highlighted that choices about treatment frequently change, and advance directives often fail to accurately forecast what a patient will want when actually experiencing a severe illness.

Consider the case of a 64-year-old woman diagnosed with cholangiocarcinoma. The cancer could not be fully resected. When she was informed of the extent of the tumor and the poor prognosis, she told her family that she was ready to die. “I’ve had a great life,” she affirmed. But her family prevailed upon her to undergo chemotherapy, and for eight years, the tumor was quiescent.

This woman had planned every detail of her funeral and had an advance directive that specified that should the cancer grow and her condition deteriorate, she did not want “heroic measures.” Her daughter recounted that her mother had said that “She was ready to die when her time came and that she wanted to die at home with dignity.”

After eight years of good health, the patient developed multiple hepatic metastases and liver abscesses. She required percutaneous drainage and hospitalization for intravenous antibiotics, and the metastatic lesions progressed. She became severely fatigued, spending the entirety of her day in bed. An avid reader all her life, she could hardly read more than a few pages before drifting off to sleep. Her condition continued to deteriorate.

Yet when asked, the patient insisted, “I want to keep trying. I want to fight.” The patient’s daughter told us that the family was “shocked and confused” by these sentiments. They all expected that she would reiterate her earlier wishes and forgo further treatment. Instead, the patient became determined to try other therapies. This was not due to medication or confusion; she was lucid when expressing her desire to undergo as much treatment as necessary to keep her alive.

This change in preferences around end-of-life care is not unusual. A study led by Terri Fried, MD, of Yale University, an expert in end-of-life decision making, illustrated how preferences can change. One hundred eighty-nine patients were studied over a two-year period; these patients had diagnoses typically seen at the end of life, including congestive heart failure, cancer and chronic obstructive lung disease. Although many of the patients had been hospitalized in the previous year, including some in the intensive care unit, most rated their current quality of life as good.

The study involved repeated patient interviews about their wishes to undergo specific medical interventions, such as intubation and a ventilator, and their choices about undergoing treatment that would prevent death but might, or might not, leave them bedridden or with significant cognitive limitations.

The researchers found that nearly half of the patients were inconsistent in their wishes about such treatments. Although more people whose health deteriorated over the two-year study period showed such shifts in preferences, even those whose health was stable changed their minds. Having an advance directive had no effect on whether a patient maintained or shifted his or her initial preferences about therapies.

This is one of several studies that led researchers like Dr. Fried and her colleague, Rebecca Sudore, MD, of the University of California, San Francisco to conclude that advance directives “frequently do not … improve clinician and surrogate knowledge of patient preferences.”

Muriel Gillick, MD, a geriatrician at Harvard Medical School and a researcher in end-of-life care, similarly wrote that, “Despite the prodigious effort devoted to designing, legislating, and studying of advance directives, the consensus of medical ethicists, researchers in health care services, and palliative care physicians is that the directives have been a resounding failure.”

Why do patients often deviate from their advance directives? They do so because they cannot accurately imagine what they will want and how much they can endure in a condition they have not experienced.

Our patient with cholangiocarcinoma originally set out her wishes in her advance directive, believing that life would not be worth living if she were bedridden. When she became ill, her family, being healthy, viewed her quality of life as so poor that it did not seem worth pursuing continued treatments. But the patient found that she could still take great pleasure in even minor aspects of living, enjoying the love and attention of her family.

Cognitive scientists use the term “focalism” to refer to a narrow focus on what will change in one’s life while ignoring how much will stay the same and still can be enjoyed. Another insight from cognitive psychology that is relevant to the changes in preferences for many patients is “buffering.” People generally fail to recognize the degree to which their capacity to cope will buffer them from emotional suffering. The often unconscious processes of denial, rationalization, humor, intellectualization and compartmentalization are all coping mechanisms that patients employ to make their lives endurable, indeed, even fulfilling, when ill.

Another limitation of an advance directive is that it cannot encompass every possible clinical scenario that may arise. For example, a patient is newly diagnosed with an incurable lung cancer with a life expectancy of two years or more. The patient states in his advance directive that he does not wish to be placed on a ventilator. Soon after initiation of treatment, the patient develops pneumonia, and intubation with ventilation for a few days is needed for support as the antibiotic therapy takes effect. Should this patient forgo being placed on a ventilator?

Over the past two decades, there have been attempts to refine the advance directive by having the patient specify at the time of hospital admission the types of treatments that are acceptable: full CPR or not, intravenous fluids, comfort measures like oxygen and pain medications. Physicians then write orders in the patient chart about each of these interventions.

While this refinement may be helpful, researchers in end-of-life care emphasize that there are no shortcuts around emotionally charged and time-consuming conversations that involve patients, families and physicians.

Even with detailed initial instructions, patients may change their minds. Repeated communication can help bring clarity to these difficult decisions. We believe an advance directive is an important beginning, but not the end, of understanding a patient’s wishes when confronting severe illness.

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