Category: Philosophy of Dying

Posted on

Other Options to Hasten Your Death

Voluntary Stopping of Eating and Drinking (VSED)

To voluntarily stop eating and drinking means to refuse all food and liquids, including those taken through a feeding tube, with the understanding that doing so will hasten death. This is an option for people with terminal or life-limiting diseases who feel that with VSED their dying will not be prolonged. One of the advantages of this decision is that you may change your mind at any time and resume eating and drinking.

The US Supreme Court has affirmed the right of a competent individual to refuse medical therapies and this includes food and fluids. This choice is also commonly accepted in the medical community.

Before You Start

You must prepare to voluntarily stop eating and drinking. It’s not something that can or should be started the day it is first discussed.

  1. Talk with your physician to let them know of your plans. Talk with your physician about all your medications, and ask if a sedative or pain medication will be available to keep you comfortable.
  2. Complete an Advance Directive stating in writing that voluntarily stopping eating and drinking is your wish. Have your physician sign orders to withhold life-sustaining therapies and all resuscitation efforts.
  3. Talk with friends and family members who might care for you during this process early about your wishes and why you may want to take this course. Their support is crucial. However, beware that for many people families are often opposed to VSED and can pose a barrier.
  4. Finalize your business and financial affairs, make funeral and memorial plans, and gather your family members to share memories and say your good-byes.
  5. If you reside in a care facility, discuss your wishes with the staff and nursing director. You will need the staff to provide support and assistance.
  6. If you are already receiving hospice care, your team can help you prepare. If you are not on hospice, ask your physician for a referral to a local hospice provider. Usually hospice will provide supportive care once you start the process.
  7. If your illness is not one that is likely to cause death within six months, arrange for a psychological evaluation for depression and decision-making capacity by a mental health provider. This will reassure family, physicians, and others that your mental status is sound and this decision well considered.

Process

You can live for a long time without eating, but dehydration (lack of fluids) speeds up the dying process. Dying from dehydration is generally not uncomfortable once the initial feelings of thirst subside. If you stop eating and drinking, death can occur as early as a few days, though for most people, approximately ten days is the norm. In rare instances, the process can take as long as several weeks. It depends on your age, illness, and nutritional status.

At first, you will feel the same as you did before starting VSED. After a few days your energy levels will decrease and you will become less mentally alert and more sleepy. Most people begin to go in and out of consciousness by the third day and later become unarousable. Hunger pangs and thirst may occur the first day, but these sensations are usually tolerable; discomfort can be alleviated with mild sedatives or other techniques such as mouth swabs, lip balm and cool water rinses.

Since dehydration will most likely be the cause of death, it is important not to drink anything once you start. Even sips of water may prolong the dying process.

I wish I could say [my father] died a gentle death. But I’m not so sure. I wish doctor-assisted death had been available to my father. I believe it is what he would have wanted.

—Christopher Stookey, MD

We recommend that all medications be stopped except for those for pain or other discomfort. Stopping medications for heart problems or diabetes, for example, may speed up the process.

Finally, one of the advantages of VSED is that you may change your mind at any time and resume eating and drinking.

People who begin this process often express a sense of peace that they can finally “stop fighting.” Some people describe a sense of euphoria or pleasant lightheadedness. There is an analgesic effect caused by dehydration that may explain this response. With dehydration, people often need less pain medication, urinate less, have less vomiting, and breathe more easily due to decreased congestion.

Resources

  • Read this story, in which Christopher Stookey recounts his father’s death by voluntarily stopping eating and drinking.
  • Browse peer-reviewed, academic-journal articles on the subject.
  • Watch this video, in which Phyllis Shacter describes her husband’s dying after he decided to voluntarily stop eating and drinking:

 


 

Note: With the exception of quotes, information in the following sections has been adopted from End of Life Washington.

Not Starting, or Stopping Treatment

For some terminally ill people, aggressive medical treatment may not be helpful and may prolong the dying process without improving quality of life. Under certain circumstances, treatments can increase suffering, ruin the remaining quality of life, or even shorten life.

Stopping treatment can result in a peaceful death but it may also result in increased discomfort. Consult with your physician and arrange for optimal palliative (comfort) care before stopping treatment.

Stopping treatment can be combined with hospice and palliative care or voluntary stopping eating and drinking to shorten the dying process and reduce suffering.

Palliative Sedation

For dying people experiencing so much pain or unmanageable symptoms that they cannot get relief from medications unless the dose is high enough to make them unconscious, palliative sedation provides enough medication to keep them continuously unconscious and thereby free of pain and symptoms. All nutrition and hydration is stopped, and they usually die within a few days.

People using palliative sedation should be monitored around the clock to be sure the sedation is adequate. While this intensive monitoring can sometimes be provided in the home, it is usually provided in a skilled nursing or inpatient hospice facility.

Many [people] claim that palliative sedation effectively eases the suffering of patients when other means fail to do so. However, it is an unacceptable option for most terminally ill adults whose primary concerns are losing autonomy, quality of life and their dignity.

—Ann Jackson

While palliative sedation is an ethical and legal end-of-life option, it is not necessarily a right. While you can request palliative sedation, it is up to the medical provider to determine if it is appropriate. Some physicians and hospices are reluctant or unwilling to authorize palliative sedation. If having the option of palliative sedation is important to you, discuss it with your hospice or other medical provider well before it becomes necessary.

Complete Article ↪HERE↩!

Posted on

The VSED Exit

A Way to Speed Up Dying, Without Asking Permission

By Paula Span

Del Greenfield had endured repeated bouts of cancer over four decades, yet kept working as a peace activist in Portland, Ore., into her 80s. “She was a powerful force,” said her daughter, Bonnie Reagan.

But in 2007, Ms. Greenfield was struggling. She had been her husband’s caregiver until he died that year at 97, never telling her family she was feeling miserable herself. She’d lost much of her hearing. She required supplemental oxygen.

When she fell and broke an arm, “that was the final straw,” her daughter said. “She was a real doer, and she couldn’t function the way she wanted to. Life wasn’t joyful anymore.”

At 91, Ms. Greenfield told her family she was ready to die. She wanted a prescription for lethal drugs, and because she had active cancer, she might have obtained one under Oregon’s Death with Dignity statute for people with terminal illnesses.

Then her son-in-law, a family physician who had written such prescriptions for other patients, explained the somewhat involved process: oral and written requests, a waiting period, two physicians’ assent.

“I don’t have time for that,” Ms. Greenfield objected. “I’m just going to stop eating and drinking.”

n end-of-life circles, this option is called VSED (usually pronounced VEEsed), for voluntarily stopping eating and drinking. It causes death by dehydration, usually within seven to 14 days. To people with serious illnesses who want to hasten their deaths, a small but determined group, VSED can sound like a reasonable exit strategy.

Unlike aid with dying, now legal in five states, it doesn’t require governmental action or physicians’ authorization. Patients don’t need a terminal diagnosis, and they don’t have to prove mental capacity. They do need resolve.

“It’s for strong-willed, independent people with very supportive families,” said Dr. Timothy Quill, a veteran palliative care physician at the University of Rochester Medical Center.

He was speaking at a conference on VSED, billed as the nation’s first, at Seattle University School of Law this month. It drew about 220 participants — physicians and nurses, lawyers, bioethicists, academics of various stripes, theologians, hospice staff. (Disclosure: I was also a speaker, and received an honorarium and some travel costs.)

What the gathering made clear was that much about VSED remains unclear.

Is it legal?

For a mentally competent patient, able to grasp and communicate decisions, probably so, said Thaddeus Pope, director of the Health Law Institute at Mitchell Hamline School of Law in St. Paul, Minn. His research has found no laws expressly prohibiting competent people from VSED, and the right to refuse medical and health care intervention is well established.

Still, he pointed out, “absence of prohibition is not the same as permission.” Health care professionals can be reluctant to become involved, because “they want a green light, and there isn’t one of those for VSED,” he added.

The question grows much murkier for patients with dementia or mental illness who have specified VSED under certain circumstances through advance directives. Several states, including Wisconsin and New York, forbid health care surrogates to stop food and fluids. (Oregon legislators, on the other hand, are considering drafting a bill to allow surrogates to withhold nutrition.)

The question intrigues bioethicists. Can your current competent self cut off nutrition and hydration for your future demented self? In a handful of court decisions, judges have declined to enforce such directives.

Can VSED be comfortable and provide a peaceful death?

“The start of it is generally quite comfortable,” Dr. Quill said he had found, having cared for such patients. The not-eating part comes fairly easily, health professionals say; the seriously ill often lose their appetites anyway.

Coping with thirst can be much more difficult. Yet even sips of water prolong the dying process.

“You want a medical partner to manage your symptoms,” Dr. Quill said. “It’s harder than you think.”

Keeping patients’ mouths moistened and having aggressive pain medication available make a big difference, health professionals say.

At the conference, the Dutch researcher Dr. Eva Bolt presented results from a survey of family physicians in the Netherlands, describing 99 cases of VSED. Their patients (median age: 83) had serious diseases and depended on others for everyday care; three-quarters had life expectancies of less than a year.

In their final three days, their doctors reported, 14 percent suffered pain, and smaller percentages experienced fatigue, impaired cognition, thirst or delirium.

Still, 80 percent of the physicians said the process had unfolded as the patients wanted; only 2 percent said it hadn’t. The median time from the start of their fasts until death was seven days.

Those results mirror a 2003 study of hospice nurses in Oregon who had cared for VSED patients. Rating their deaths on a scale from 0 to 9 (a very good death), the nurses assigned a median score of 8. Nearly all of the patients died within 15 days.

The slower pace of death from fasting, compared with ingesting barbiturates, gives people time to say goodbye and, for the first few days, to change their minds. Several conference speakers described patients who had fasted and stopped a few times before continuing until death.

That’s hard on families and caregivers, though. And slowness won’t benefit people who are dying with severe shortness of breath or pain. “Two weeks is a lifetime in that situation,” Dr. Quill said.

Other obstacles could restrict VSED. A quiet choice in a private home, it could be derailed in nursing homes and assisted living facilities where administrators fear lawsuits or regulatory sanctions. Physicians might decline to participate; home care aides might quit.

Moreover, major religious groups have yet to declare whether they consider VSED an acceptable act of self-determination or a suicide, anathema in most faiths.

Phyllis Shacter and her husband, Alan Alberts, a computer scientist who received a Alzheimer’s disease diagnosis in 2011, had few doubts, however. VSED allowed him to escape the disease that had slowly killed his mother.

No state allows a person with dementia to use a “death with dignity” law, but with support from his wife, doctor and two caregivers, Mr. Alberts, 76, died peacefully at home in 2013 after a nine-day fast.

“I’m glad my husband fulfilled his desire not to live into the final stages of Alzheimer’s,” Ms. Shacter said.

On the other hand, Judith Schwarz, clinical coordinator of End of Life Choices New York, told of an 81-year-old attempting VSED with inadequate pain medication, crying out to his wife at night, “I’m dying of thirst.”

“And of course, he was, but slowly,” Dr. Schwarz said. “This was a horror show.”

Del Greenfield fared better. “She didn’t use any medicines, just some oxygen,” her daughter said. Ms. Greenfield’s children, grandchildren and great-grandchildren came to see her, and “she was completely peaceful, chatting and joking and telling people she loved them.”

She announced that she had one regret. “We all leaned in,” Bonnie Reagan said. “And she said, ‘I wish I’d seen the Rolling Stones the last time they came to Portland.’”

On the fifth day of fasting, “she just fell asleep,” and died about 36 hours later.

Complete Article ↪HERE↩!

Posted on

VSED is gaining traction as an end-of-life option

by Xavier Symons

[I]n the past two decades there has been a dramatic increase in political lobbying to legalise euthanasia and/or physician assisted suicide (E-PAS). Yet even when E-PAS is legalised, many people who have been campaigning for the right to end their lives often remain unable to do so as they do not meet the strict eligibility criteria outlined in law (such as having a terminal illness, and having less than 6 to 12 months to live).

In light of this, and other factors, the notion of Voluntarily Stopping Eating and Drinking (VSED) has gained increased attention in policy discussions. VSED — whereby patients refuse food and hydration and indicate that when incompetent they do not wish to receive it — has been described by bioethicists as a mode of ending one’s life that is legal, in line with medical ethics and a moral prerogative of any patient.

Now it seems that VSED is gaining traction in a clinical context. A new article published in the Journal of Palliative Medicine outlines how long term care facilities such as nursing homes and skilled nurse facilities can facilitate VSED while still respecting “resident safety” and “moral objections to hastened death”. University of Washington palliative care doctor David A. Gruenewald describes how facilities that he has been involved in have managed patient requests for VSED. He argues that VSED may be, where the patient’s wish to end their life is persistent, in accord with “resident-centred care”. Gruenewald calls on long term care facilities to develop evidence based guidelines and guidelines for best practice for dealing with requests for VSED.

In another article in the latest edition of the Canadian Journal of Bioethics, lawyer Jocelyn Downie explores the legal status of VSED in Nova Scotia, Canada, arguing that it is a legal alternative for patients who are ineligible for MAiD (such as early stage Alzheimer’s patients, stroke victims, patients with mental illness and patients with debilitating pain but not terminal illness) who nevertheless wish to end their lives.

Last month BioEdge reported on the case of a 65 year old transgender person from Denver, Colorado, who ended his life by VSED after being diagnosed with early onset Alzheimer’s disease.

Complete Article ↪HERE↩!

Posted on

Pagans, Death and the Afterlife

by Patti Wigington

[F]or many modern Pagans, there is a somewhat different philosophy on death and dying than what is seen in the non-Pagan community. While our non-Pagans see death as an ending, some Pagans view it as a beginning of the next phase of our existence. Perhaps it is because we view the cycle of birth and life and death and rebirth as something magical and spiritual, a never-ending, ever turning wheel. Rather than being disconnected from death and dying, we tend to acknowledge it as part of a sacred evolution.

In The Pagan Book of Living and Dying, author Starhawk says, “Imagine if we truly understood that decay is the matrix of fertility… we might view our own aging with less fear and distaste, and greet death with sadness, certainly, but without terror.”

As the Pagan population ages – and certainly, we are doing so – it’s becoming more and more likely that at some point each of us will have to bid farewell to a fellow Pagan, Heathen, Druid, or other member of our community. When that happens, what is the appropriate response? What can be done to honor the person’s beliefs and send them on their way in a way that they themselves would have valued, while still managing to maintain sensitivity in dealing with their non-Pagan family members and friends?

Views of the Afterlife

Is death the end, or just another beginning?

Many Pagans believe that there is some sort of afterlife, although that tends to take varying forms, depending on the individual belief system. Some followers of NeoWiccan paths accept the afterlife as the Summerland, which Wiccan author Scott Cunningham described as a place where the soul goes on to live forever. In Wicca: A Guide for the Solitary Practitioner, he says, “This realm is neither in heaven nor the underworld. It simply is — a non-physical reality much less dense than ours. Some Wiccan traditions describe it as a land of eternal summer, with grassy fields and sweet flowing rivers, perhaps the Earth before the advent of humans. Others see it vaguely as a realm without forms, where energy swirls coexist with the greatest energies – the Goddess and God in their celestial identities.”

Members of non-Wiccan groups, particularly those who follow a more Reconstructionist slant, may see the afterlife as Valhalla or Fólkvangr, for those who adhere to a Norse belief system, or Tir na nOg, for individuals who participate in a Celtic path. Hellenic Pagans may see the afterlife as Hades.

For those Pagans who don’t have a defined name or description of the afterlife, there is still typically a notion that the spirit and the soul live on somewhere, even if we don’t know where it is or what to call it.

Tawsha is a Pagan in Indiana who follows an eclectic path. She says, “I don’t know what happens to us when we die, but I like the idea of the Summerland. It seems peaceful, a place where our souls can regenerate before they reincarnate into a new body. But my husband is a Druid, and his beliefs are different and focus more on the Celtic view of the afterlife, which seems a little more ethereal to me. I think it’s really all just different interpretations of the same place.”

Deities of Death and the Afterlife

Anubis guided the souls of the dead through the underworld.

Cultures have, since the beginning of time, honored deities associated with the process of dying, the act itself, and the journey of the spirit or soul into the afterlife. Although many of them are celebrated during the harvest season, around Samhain, when the earth itself is slowly dying, it is not uncommon to see them called upon as someone is approaching their last days, or has recently crossed over.

If you follow an Egyptian, or Kemetic, path, you may choose to honor Anubis, the jackal headed god of death. Anubis’ job is to determine whether the deceased is worthy of entering the underworld, by taking the individual’s measure. To help ease their passing, you may choose to sing or chant to Anubis about the dying or dead person’s accomplishments.

For Pagans who follow an Asatru or Heathen belief system, prayers and chants to Odin or to the goddesses Hel and Freya might be appropriate. Half of the warriors who die in battle go to spend the afterlife with Freya in her hall, Folkvangr, and the others go to Valhalla with Odin. Hel takes charge of those who have died from old age or sickness, and accompanies them to her hall, Éljúðnir.

A Maryland Heathen who asked to be identified as Wolfen says when his brother died, “We had this huge ceremony with a big bonfire, lots of drinking and toasts, and song. My brother had already been cremated, but we added his ashes to the fire, and we sang a song honoring him and his accomplishments, and introducing him to Odin and Valhalla, and then we continued it by calling upon our ancestors, going back about eight generations. It was what he wanted, and probably the closest thing to a Viking funeral that you can get in suburban America.”

Other deities you may wish to call upon as someone is dying, or has crossed over, include the Greek Demeter, Hecate, and Hades, or the Chinese Meng Po. Be sure to read more about: Deities of Death and the Afterlife.

Funerary Rites

In many countries in the modern world, the practice of burying the dead is common. However, it’s a relatively new concept by some standards, and in some places, it’s almost a novelty. In fact, many of today’s contemporary funeral practices might be considered a bit strange by our ancestors.

In other societies, it is not uncommon to see the dead interred in trees, placed on giant funeral pyres, closed up in a ceremonial tomb, or even left out for the elements to consume.

One trend that is increasing in popularity in the Western world is that of “green burial,” in which the body is not embalmed, and is simply buried in the soil with no coffin, or with a biodegradable container. While not all areas permit this, it is something worth looking into for someone who truly wishes to be returned to earth as part of the cycle of life and death.

Memorial and Ritual

How will you be remembered when you’ve crossed over?

Many people – Pagans and otherwise – believe that one of the best ways to keep someone’s memory alive is to do something in their honor, something that keeps them alive in your heart long after theirs has stopped beating. There are a number of things you can do to honor the dead.

Rituals: Hold a memorial ritual in the individual’s honor. This can be as simple as lighting a candle in his or her name, or as complex as inviting the entire community together to hold a vigil and offer blessings for the person’s spirit as they cross over into the afterlife.

Causes: Did the deceased person have a favorite cause or charity that they worked hard to support? A great way to memorialize them is to do something for that cause that meant so much to them. Your friend who adopted all of those shelter kittens would probably love it if you made a donation to the shelter in her name. How about the gentleman who gave so much time to cleaning up local parks? What about planting a tree in his honor?

Jewelry: A popular trend during the Victorian era was to wear jewelry in the deceased’s honor. This might include a brooch holding their ashes, or a bracelet woven from their hair. While this may sound a bit morbid to some folks, bereavement jewelry is making quite a comeback. There are a number of jewelers who offer memorial jewelry, which is typically a small pendant with a hole in the back. Ashes are poured into the pendant, the hole is sealed with a screw, and then the friends and family of the dead can keep them nearby any time they like.

Be sure to read the following articles on death, dying and the afterlife:

  • Caring for Our Dead: Every society, throughout history, has found some way to attend to the proper care of their dead. Let’s look at some of the different methods in which various cultures have said farewell to their loved ones.
  • Ray Buckland on Death and Dying: Wiccan author Ray Buckland recently did a presentation on a Pagan view of death and dying. He has graciously allowed us permission to share that presentation here on the Pagan/Wiccan website.
  • What Happens to Your Magical Items After You Die? Since so many members of the Pagan community work as solitaries, and may never come into contact with other Pagans during their lifetime, one issue that comes up as our population ages is that of what to do with magical tools and other items after death.
  • A Pagan Blessing for the Dead: This simple memorial ceremony can be performed for a deceased loved one. It invokes the powers of the earth, air, fire and water to send the departed off to their next destination.
  • Prayer for the Dying: This prayer is one which may be said by or on behalf of a dying person, and addresses the need we have to feel at home in the last moments of life.
  • Prayer to Hel: In Norse mythology, Hel features as a goddess of the underworld. She was sent by Odin to Helheim/Niflheim to preside over the spirits of the dead, except for those who were killed in battle and went to Valhalla. It was her job to determine the fate of the souls who entered her realm.
  • Prayer to Anubis: This prayer honors the Egyptian god of the underworld, Anubis. He is honored as the god who takes our measure when we cross from this life into the next.
  • Prayer to the Gods of Death: At Samhain, the earth is growing cold and dark. It is a time of death, of endings and beginnings. This prayer honors some of the deities associated with death and the underworld.

Complete Article ↪HERE↩!

Posted on

Do We Have A Right To A ‘Good Death’?

By

[S]hould doctors do everything they can to preserve life, or should some medical techniques, such as cardio-pulmonary resuscitation (CPR), be a matter of patient choice? Doctor Sarah Simons wades into the debate and argues that ‘do not resuscitate’ decisions are all about patients’ human rights.

Of all our human rights, the right to life is the one most often held up as the flagship, fundamental right: after all, without life, how can one learn, love, communicate, play or have a family?

The right to life is closely linked to the right to health. Under the International Covenant on Economic, Social and Cultural Rights, which the UK has signed and ratified, states are required to “recognise the right of everyone to the enjoyment of the highest attainable standard of physical and mental health”.

Protecting patients’ rights to life and health involves providing necessary life-saving treatment (known as resuscitation) if their life is threatened by serious illness or injury. It also involves enabling patients to live as well as possible for as long as possible: for example, by treating preventable diseases and encouraging people to adopt a healthy lifestyle. However, although many aspects of medicine and health are unpredictable, death is the one certainty for all of us.

Is There a Right to a Good Death?

In recent years, there has been much debate surrounding how healthcare practitioners should approach end-of-life issues with patients. A ‘good, natural death’ is increasingly recognised as a part of someone’s human right to life.

When healthcare professionals acknowledge that someone is approaching the final stages of their life, and no longer responding to life-saving treatment, treatment is not withdrawn, but instead, the goal is changed to treatment focussed on preserving the patient’s quality of life and managing their symptoms in accordance with their wishes. It’s important to draw a distinction between this and the ethical debate on euthanasia, which is altogether different from end-of-life care and natural death.

A ‘good, natural death’ is increasingly recognised as a part of someone’s human right to life.

Sarah Simons

This change of focus often includes completing a ‘Do Not Resuscitate’ (DNR) order, instructing healthcare teams not to carry out cardiopulmonary resuscitation (CPR) when the patients’ heart and lungs cease to work. This decision is usually made on the grounds of pre-existing medical conditions and poor physiological reserve and frailty, which mean that CPR will not be successful. A DNR should always take into account the patient’s informed opinion on the matter, or at least their next of kin’s.

A DNR decision only refers to CPR. The patient can still receive treatment for related issues, such as antibiotics for an infection, and all other life-preserving or life-saving treatments can be given until the patient’s heart and lungs stop working. A DNR decision never means that life-saving treatment is not given – the purpose of a DNR is to allow the patient to pass away naturally and peacefully, with dignity and without traumatic medical intervention.

What Exactly is CPR?

Understanding the reality of CPR is vital to understanding why it is a human rights issue. CPR is used when someone has a cardiac arrest, which means they have suddenly stopped breathing and their heart has stopped beating.

CPR specifically refers to the chest compressions, electric shocks and artificial breathing technique used to stimulate and replicate the beating of the heart to pump blood around the body and the breaths taken to inflate the lungs with oxygen. This is effective when a sudden cardiac arrest occurs and someone’s organs stop unexpectedly, but the underlying mechanism of a cardiac arrest is very different from when the heart stops beating as part of the body’s natural decline at the end of life. 

CPR is traumatic, undignified and usually unsuccessful in patients of all ages.

Sarah Simons

Sadly, despite Hollywood’s optimistic depictions of resuscitation, the reality is that CPR is often traumatic, undignified and usually unsuccessful in patients of all ages. CPR will not reverse years of gradually shrinking muscle mass, rejuvenate brains worn down by the steady decline of dementia, remove cancerous tumours or clear obstructed lungs weathered by years of COPD, which are often the underlying causes when someone’s heart and lungs have stopped.

 

CPR will cause bruising, vomiting, bleeding and broken ribs. CPR will render someone’s dying moments traumatic and undignified, and it will leave their friends and families with lasting memories of a failed, brutal resuscitation rather than a mental image of their loved one peacefully slipping away pain-free and asleep.

What Do Experts Have to Say About This?

Guidance published by the General Medical Council (GMC) in 2016 emphasised the importance of recognising patients’ human rights in relation to decisions about CPR and end-of-life care. The guidance recognised that “provisions particularly relevant to decisions about attempting CPR include the right to life (Article 2) [and] the right to be free from inhuman or degrading treatment (Article 3)”.

Article 3 of the Human Rights Convention specifically refers to the right to protection from inhuman or degrading treatment, and understanding the brutal, traumatic reality of CPR is a crucial consideration when thinking about DNR decisions. The GMC goes on to reference “the right to respect for privacy and family life (Article 8), the right to freedom of expression, which includes the right to hold opinions and to receive information (Article 10) and the right to be free from discrimination in respect of these rights (Article 14).”

The GMC guidance also highlights that the Human Rights Act, (which incorporates the Human Rights Convention into UK law), “aims to promote human dignity and transparent decision-making”, which should also be key concerns for doctors making decisions across all aspects of medicine.

Making the Right Choice For The Patient

Having open, frank discussions about CPR, and end-of-life decisions in general, enables healthcare professionals and patients to make informed decisions together. Doing so empowers patients to ask questions and insist that their rights are respected. It gives patients time to talk to their loved ones about what’s important to them, including any religious considerations, before their health deteriorates to a point where these conversations may not be possible. 

Having open, frank discussions about CPR … enables healthcare professionals and patients to make informed decisions together.

Sarah Simons

Avoiding these conversations, while perhaps understandable given that no-one likes to think of their loved ones dying, means that important questions may not get asked and the patient’s wishes may go unheard. Making decisions on CPR and other practical matters is important, but so is acknowledging that someone wants to spend their last days eating mint chocolate chip ice cream at home listening to a specific Eva Cassidy album whilst surrounded by their pets and children.

As the NHS turns 70 later this year, and continues to navigate the challenges of an ageing population, conversations about end-of-life care are more important than ever before. Grief and bereavement are difficult, emotionally charged topics of conversation, but death is a normal human process. Taking the opportunity to talk about what we want at the end of our lives empowers us to make informed decisions and ultimately help all of us to die well one day.

Complete Article ↪HERE↩!

Posted on

‘Living While Dying,’ Cathy Zheutlin’s film explores end of life

By

Filmmaker Cathy Zheutlin, right, with her mother, Jonnie Zheutlin. Cathy Zheutlin was inspired to make the film ‘Living While Dying,’ when her mother’s partner was diagnosed with terminal cancer.

“It wasn’t loss that triggered this, it was curiosity,” says filmmaker Cathy Zheutlin of her new documentary, “Living While Dying,” a short film whose subtitle reads: “A story of life. A story of death. Finding joy in the journey.” Zheutlin, who stumbled upon the good fortune of having two parents alive in their 90s, became fascinated with the idea of mortality, an inevitability we all face, despite it being hidden from view — and polite conversation, for that matter. Her exploration of the topic extends an invitation to viewers, one that hinges on conversation as the most necessary component surrounding mortality and the end-of-life choices that arise as a result. After having made its debut in Ashland and Portland, Oregon, where the filmmaker and her mother reside, Zheutlin’s film is making the rounds in the northeast; it will be screened Wednesday, June 6, at 7:30 p.m. at Kimball Farms Life Care in Lenox.

The inspiration for Zheutlin’s film came when her mother’s partner, Clair, learned he had terminal cancer. “We had a dying man in the living room,” she recalls in the film’s trailer. “I am a filmmaker so I asked Clair if I could film him; he said ‘yes,’” continues Zheutlin. This impetus, coupled with what she calls a desire to push the envelope of consciousness, led Zheutlin and her husband, Edis Jurcys, a brilliant photographer, to embark on the telling of these stories. Their exploration took them to Australia where they met a death walker, and to Bali where they saw a mass cremation. When the pair learned that dear friend Don was dying back at home, Zheutlin took “a deep dive into reflecting on death and grappling with the meaning of life.” The result is “Living While Dying.”

“This is territory that we cannot avoid,” said Zheutlin, whose work stemmed from a simple observation on her part: “So many people have so much to say [and yet] the conversation is mostly not happening.” The documentary project, a full five years in the making, catapulted her back into the world of professional filmmaking after a 32-year hiatus. She decided to pick up her camera and film four friends with terminal illnesses who chose to live out their days in hospice care at home. What ensues is a bold discussion of the inevitable, and one filmmaker’s attempt to remove the pall from a subject that, if considered from a different perspective, is but the final developmental stage in life — one to be revered and celebrated in much the same way as all those that precede it.

Jonnie Zheutlin’s partner, Clair Killen, near the end of his life.

“You can’t destroy energy, that became really clear to me,” recalls Jonnie Zheutlin of her own experience walking through end of life with her partner of 12 years, Clair. “I don’t actually fear dying,” is the elder Zheutlin’s stance on the subject. Jonnie took an OLLI class in Oregon called “Talking About Dying as If It Could Happen to You,” which she found to be both fascinating and on target — not to mention independent of her daughter’s project. This, coupled with Clair’s death, urged her on to further explore the subject. She recounts the first time Clair showed up, shortly after he died; she was looking out the window and, from the trees, this tape kept coming out. At first Jonnie thinks it’s a kite; she wonders what’s going on and then she has a realization: “The way it moved, it moved the way Clair danced — it was so clear, but I was frantic, I wanted someone to validate it,” she explains. From these experiences, a conversation between the mother-daughter pair has ensued.

“The advantage of having conversations when we are healthy is that, when we are in crisis, it’s not the time to begin thinking about all the various choices. And there are a zillion choices,” says Zheutlin. It’s the pre-thinking to support us along the way that Zheutlin hopes will inspire others to embark on a dialogue that, for many, is not welcome. In the documentary, Jonnie and her daughter model a conversation (Zheutlin is the film’s narrator) while Jonnie sits in a coffin. Zheutlin was conscious of her choice to model the conversation with her mother — who is very comfortable talking about her own EOL choices — in the presence of an image that was not terribly stereotypical. She felt the iconic images of individuals contemplating death while meandering through a cemetery to be too cliché. “That step of taking something scary and foreign and only associated with grief” proved liberating in her portrayal. She goes on to clarify: “I don’t think we should ever disassociate grief and death — it’s just that it’s not the only part [to be emphasized] because it’s natural. We somehow need to integrate it,” Zheutlin explains.

The film arises out of a grassroots movement — with titles running the gamut — that revolves around reclaiming death in much the same way baby boomers reclaimed birth. “They said, ‘let’s have our babies at home, [as] birth is not a medical event.’” Well, death isn’t necessarily a medical event, either. “Death is a natural thing that happens at the end of every single life. It’s 100 percent going to happen,” Zheutlin reminds her audience. But we don’t get to see the images of nonmedicalized death; this is where Zheutlin comes in. “Living While Dying” offers viewers a glimpse of what death looks like when one goes the nonmedical route and chooses hospice at home. “My experience is not prescriptive or comprehensive; everybody’s experience is going to be unique and important and worthy of being uplifted,” Zheutlin said. “I’m not promoting an ideology, I’m promoting a conversation,” she says of her intensely personal approach. One thing is certain: Death is somehow less scary after viewing this film. “It’s not articulated, but it’s felt,” Zheutlin explains. As for Jonnie Zheutlin’s last word on the topic? “I used to have cement in my mouth,” she says, borrowing a term she once heard a child use in her days as a therapist. “I am learning to verbalize; it’s taken me almost 90 years to learn to use my voice,” she jokes, adding “Thank God I’ve lived long enough to do that!”

Zheutlin’s film has been hailed as a brave and honest immersion in a difficult topic. In her director’s statement, she cuts straight to the chase: “Death is a teacher. Many of us are scared of death. We feel unprepared both for our own deaths and the deaths of people (and animals!) we love. Our associations with death are morbid, dark, cold, depressing, and laden with grief and pain. So we do not talk much about death. In modern times, we have medicalized the end of life, and disconnected it from nature. In trying to prolong life by any means necessary, we only succeed in keeping death shrouded in darkness. By keeping our distance from death, cloaking it, hiding our eyes from it, we actually lose touch with a sacred phase of life. Because, as we all know, death is a part of life — for all of us.”

Director-producer Zheutlin has been principal cinematographer on award-winning PBS documentaries including “The Life and Times of Rosie the Riveter,” “The Other Philadelphia Story” and the 1982 Academy Award nominee “See What I Say.” Her 1986 documentary “Just One Step: The Great Peace March” led to a co-production with Soviet TV about the first Soviet-American peace walk. In short, she has spent her career making films that explore consciousness and encourage progressive change. Her documentary “Living While Dying” was an official selection for the THIRD ACTion Film Festival, which celebrates aging and older adults while helping to create an age-positive culture shift. For more information, visit www.livingwhiledying.org.

Complete Article ↪HERE↩!

Posted on

‘My dad gave us a gift’

Daughter opens up on father’s medically assisted death

Jen Wiles, far left, and Shanaaz Gokool, CEO of Dying with Dignity Canada, second from the right, pose with other speakers ahead of an end-of-life speech on Saturday, June 2, 2018.

By Zach Laing

[A]s with thousands of other Canadians, Robert Wayne Nelson had the chance to die on his own terms.

Nelson’s earlier diagnosis of Parkinson’s disease was enough to handle in the years leading up to his spring 2016 diagnosis of progressive supranuclear palsy — a disease his daughter, Jen Wiles, described as Parkinson’s “evil big brother.”

Doctors didn’t know what to do. The severe brain disorder holds no effective treatments.

However, as a biologist throughout his life, the then-71-year-old had always followed legislation surrounding medical assistance in dying.

“My dad was the first medically assisted death in our community,” said Nelson’s only daughter, Wiles, of her father who died on Feb. 15, 2017, in Camrose.

“He really understood that there was a place for this — not that he ever thought he would use it.”

In February 2015, the Supreme Court of Canada ruled in Carter v. Canada that parts of the Criminal Code prohibiting doctor-assisted death would need to change to satisfy the Canadian Charter of Rights and Freedoms.

The ruling opened the door for medical assistance in dying and on June 17, 2016, federal legislation allowed people to die on their own terms, under certain circumstances.

In October 2017, Health Canada released numbers showing there were 2,149 medically assisted deaths in Canada between Dec. 10, 2015, and June 30, 2017.

As of April 30, 2018, Alberta Health Services reported 364 Albertans had received medical assistance in dying — of those, cancer, multiple sclerosis, ALS and advanced lung disease are the most-cited health conditions.

Those who wish to end their life on their own terms must have a grievous and incurable condition. Then, they have to make their initial request before two required assessments, followed by a 10-day waiting period — one that can be waived.

Wiles said their fight for her father to undergo doctor-assisted death was a challenging one.

“We didn’t have community support because of our faith-based community, which was really challenging,” said Wiles.

Robert Wayne Nelson pictured in an undated photo, died with medical assistance on Feb. 15, 2017.

“It was really hard to find assessors in central Alberta.”

It took nearly a year for Nelson to get his wish of assisted death, but it was something that left his family at peace.

“Despite the fact that we went through this really challenging couple of months … for us, it was really good,” said Wiles.

“The outcome for our family was positive — it was what he wanted. After his death we felt good, which is a strange thing to say. We did everything with him. We went to the funeral home, we picked up a column burial together, we did all this stuff with him.

“Through all those months, we came to a place that was really kind of beautiful and we have felt good since. We were able to really grieve ahead of time. He was relieved, we were relieved. We got up the next morning and we felt good.”

Knowing he was able to go out on his own terms only help the family he left behind.

“He did not want to go into palliative care, he did not want to see the end of his disease process,” she said.

The day after Nelson died, Wiles’ mother went to her coffee group sharing the story of the day before.

There, a woman who lost her husband nine years prior to a terrible battle with cancer wept openly as she wasn’t able to be over the trauma of his death.

“My dad gave us a gift — we didn’t have to watch that suffering,” said Wiles.

“He already couldn’t write, couldn’t read, he couldn’t be on the computer, couldn’t talk on the phone. All the beautiful things he did with his life, he couldn’t do anymore.”

Shanaaz Gokool, CEO of not-for-profit Dying with Dignity, explained ahead of a Saturday speaking event marking two years since the practice became legal how the process can be different for everybody.

“The more precarious your health is, the greater chance you have of losing capacity and therefore you can lose the right altogether. Medical assistance in dying is a life-affirming treatment,” she said, noting in communities that are less prepared, it’s more difficult to find support.

“Assisted dying for those left behind can be the gift of no regret.”

For those in small communities like the one Nelson lived in, the process for medically assisted death can be a frustrating one.

However, those living in major centres like Toronto can go through the process start to finish in one day.

Gokool said the next step for the country is looking at opening up the legislation to make medically assisted deaths easier and more accessible.

“The problem is that the legislation uses deliberately vague language and it excludes many hundreds and possibly thousands more. We have different interpretations from one end of the country to the other in terms of the eligibility criteria,” she said.

“Then we have different access issues people are having — hurdles and obstacles in their way.”

Complete Article ↪HERE↩!