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

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by Xavier Symons

In 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!

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Grief before death

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– understanding anticipatory grief

Carers often feel grief even though the person they’re caring for is still alive. This could happen if the person being cared for has a life-limiting condition (a condition that has no reasonable hope of a cure), or their personality has been affected by their illness.

Although not everyone experiences this ‘anticipatory grief’, people who do can feel the same emotions and sense of mourning as if the person had actually died.

You may have a wide range of emotions, such as loss, dread, guilt and anxiety. Everyone reacts differently, and it’s good to accept that your coping method is unique.

The grief you might experience may not initially be for the person you care for, but for the life you currently lead. Becoming a carer can change your life dramatically, and you may feel like you’ve lost some of your freedom or social life.

The extra responsibility, and not being able to do anything without planning, can be stressful. You might feel guilty about feeling this way, but it’s a natural reaction to such a big change in your life.

Grieving before a person dies doesn’t necessarily mean that you won’t grieve when they pass away. Everyone reacts differently to these circumstances. While some people feel prepared for the death and have closure, others may start the grieving process all over again.

If you experience pre-death grief, it’s vital for you to talk to someone.

Dealing with conditions that affect a person’s personality and memory can be very traumatic, particularly if you’re caring for a relative or close friend.

Many carers find that they grieve for the loss of the person they once were. You might grieve for the memories that you have together, which the cared-for person will forget. You may grieve for the changes to their personality or for any future plans that they may no longer be able to carry out. You may feel conflicting emotions as the person you look after loses their mental functions or stops recognising you.

Terminal conditions

Finding out that someone you care for has a terminal disease can leave you feeling powerless and devastated.

If you experience pre-death grief, it’s just as vital for you to talk to someone and feel supported as it is when someone has already died. You might find that it helps to talk to friends and family, or the person you care for. A long illness means both of you have time to slowly prepare for the death, to say what you want to say or to share memories. One idea is to write about what the person has meant to you and then read it aloud to them.

You might also consider talking to a counsellor. It can help to discuss your feelings with someone who is objective and doesn’t have emotional ties to the situation. This can help, particularly if the person you care for is in denial about their condition. The counsellor can talk to you about your feelings, suggest ways that you can help the person being cared for, and discuss the difficult post-death decisions that you may need to make, such as organ donation.

Bottling up your emotions can leave you feeling overwhelmed and, in some cases, affect your health. So it’s important to find someone to support you.

Complete Article HERE!

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5 Steps for Dealing with Anticipatory Grief

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It might be the hardest part of caregiving: Watching your loved one slip away step by terrible step, knowing you can’t stop the decline and grieving the loss of the person you once knew, long before they’re actually gone. Psychologists call this process anticipatory grief, and it’s very common among caregivers and family members of those suffering from Alzheimer’s disease, cancer, and other terminal illnesses.

Coping with Your Grief

“As a disease progresses, there is so much frustration and sadness associated with watching the person you once knew go away,” says Vince Corso, M.Div, LCSW, CT. “It can be overwhelming.”

Corso provided care to his mother, who suffered from Alzheimer’s. He found one of the painful milestones of the disease as the point at which she no longer recognized him. “My mom didn’t recognize us, and she confused us with other people. As a son and a caregiver, that was really hard. I had to leave the room.” But after a period of time, he says, he became acclimated to his new reality and began to accept it. He found that sharing the sense of loss with family members can be very helpful. “It’s so crucial that family members talk about the loss.”

Here are some other ways caregivers can work through their feelings of anticipatory grief:

Allow feelings of grief to help you prepare

Take time to examine unresolved issues between you and your loved one. Imagine life without him or her. “Say what needs to be said,” Corso advises. And if your family member is still well enough, settle legal and financial matters and discuss end-of-life wishes.
Educate yourself about what to expect

Learn about your family member’s condition—know the symptoms, the side effects from any treatments, and the prognosis. It may help you to feel in control if you understand what is coming down the pike.

Talk to somebody

Find a support group of people who are experiencing the same thing, whether it is online, in person, or over the phone. “Someone in a similar situation can provide a lot of insight,” says Corso. “And it’s okay to be honest about your feelings. You’re not being disrespectful to your family member if you express your frustration.”

Enlist help and continue to live your life

Reach out to family and friends or hire someone to help with the care of your loved one. Don’t put your life on hold. Meet with friends and try to have fun when you can. “In the long run, it will help the patient and yourself,” says Corso. “You’ll have more energy to care for your loved one and to do what you need to do.”

Create moments your family member can enjoy

Even though your family member is no longer the person she once was, she can still enjoy pleasurable activities with you. Take mom outside for some fresh air, play music for her, do simple puzzles if she is able. In the end, these moments might be what you cherish most.

Helping Your Loved One Adjust

When illness or injury robs your loved one of the ability to remember things about themselves, it can be scary and profoundly difficult. How do you help them cope with the changes in memory and identity?

Look for ways to add new activities to your loved one’s life, or think about how you might incorporate elements of a favorite pastime. If your mother was an avid golfer, she may have no interest in taking up knitting if her doctor tells her to stay off the links. Ask her what she misses about golf, though, and you may realize that she misses the camaraderie more than the activity itself. Would she be able to meet her foursome for lunch after they’ve finished their round?

Remember too that this is a type of loss. Feelings associated with the grieving process, including denial, anger, and depression, are normal. Talking to a social worker, therapist, clergyperson, or even a sympathetic friend may help you or your loved one manage the emotions and come to terms with the loss. If there’s a support group in your area, hearing how others have coped with the changes you’re experiencing can provide insight and concrete steps, and learning that you aren’t alone in your feelings can be reassuring.

Complete Article HERE!

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Do We Have A Right To A ‘Good Death’?

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Should 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!

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

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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!

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What Is Normal Grieving, and What Are the Stages of Grief?

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Grief is a natural response to losing someone or something that’s important to you. You may feel a variety of emotions, like sadness or loneliness. And you might experience it for a number of different reasons. Maybe a loved one died, a relationship ended, or you lost your job. Other life changes, like chronic illness or a move to a new home, can also lead to grief.

Everyone grieves differently. But if you understand your emotions, take care of yourself, and seek support, you can heal.

What Are the Stages of Grief?

Your feelings may happen in phases as you come to terms with your loss. You can’t control the process, but it’s helpful to know the reasons behind your feelings. Doctors have identified five common stages of grief:

  • Denial: When you first learn of a loss, it’s normal to think, “This isn’t happening.” You may feel shocked or numb. This is a temporary way to deal with the rush of overwhelming emotion. It’s a defense mechanism.
  • Anger: As reality sets in, you’re faced with the pain of your loss. You may feel frustrated and helpless. These feelings later turn into anger. You might direct it toward other people, a higher power, or life in general. To be angry with a loved one who died and left you alone is natural, too.
  • Bargaining: During this stage, you dwell on what you could’ve done to prevent the loss. Common thoughts are “If only…” and “What if…” You may also try to strike a deal with a higher power.
  • Depression: Sadness sets in as you begin to understand the loss and its effect on your life. Signs of depression include crying, sleep issues, and a decreased appetite. You may feel overwhelmed, regretful, and lonely.
  • Acceptance: In this final stage of grief, you accept the reality of your loss. It can’t be changed. Although you still feel sad, you’re able to start moving forward with your life.

Every person goes through these phases in his or her own way. You may go back and forth between them, or skip one or more stages altogether. Reminders of your loss, like the anniversary of a death or a familiar song, can trigger the return of grief.

How Long Is Too Long to Mourn?

There’s no “normal” amount of time to grieve. Your grieving process depends on a number of things, like your personality, age, beliefs, and support network. The type of loss is also a factor. For example, chances are you’ll grieve longer and harder over the sudden death of a loved one than, say, the end of a romantic relationship.

With time, the sadness eases. You’ll be able to feel happiness and joy along with grief. You’ll be able to return to your daily life.

Do I Need Professional Help?

In some cases, grief doesn’t get better. You may not be able to accept the loss. Doctors call this “complicated grief.” Talk to your doctor if you have any of the following:

  • Trouble keeping up your normal routine, like going to work and cleaning the house
  • Feelings of depression
  • Thoughts that life isn’t worth living, or of harming yourself
  • Any inability to stop blaming yourself

A therapist can help you explore your emotions. She can also teach you coping skills and help you manage your grief. If you’re depressed, a doctor may be able to prescribe medicines to help you feel better.

When you’re in deep, emotional pain, it can be tempting to try to numb your feelings with drugs, alcohol, food, or even work. But be careful. These are temporary escapes that won’t make you heal faster or feel better in the long run. In fact, they can lead to addiction, depression, anxiety, or even an emotional breakdown.

Instead, try these things to help you come to terms with your loss and begin to heal:

  • Give yourself time. Accept your feelings and know that grieving is a process.
  • Talk to others. Spend time with friends and family. Don’t isolate yourself.
  • Take care of yourself. Exercise regularly, eat well, and get enough sleep to stay healthy and energized.
  • Return to your hobbies. Get back to the activities that bring you joy.
  • Join a support group. Speak with others who are also grieving. It can help you feel more connected.

Complete Article HERE!

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A Burial Practice That Nourishes The Planet

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Here’s a question we all have to answer sooner or later: What do you want to happen to your body when you die? Funeral director Caitlin Doughty explores new ways to prepare us for inevitable mortality. In this thoughtful talk, learn more about ideas for burial (like “recomposting” and “conservation burial”) that return our bodies back to the earth in an eco-friendly, humble and self-aware way.

 

 

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