Category: Preparing for Death

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The Various Costs of Dying

— A new report breaks down what it costs to die, giving further reason to make clear final arrangements

By Emma Suttie

As a culture, we don’t like to talk about death. Even though it’s the destination we all share, regardless of our beliefs, most of us prefer not to think about it. Unfortunately, this aversion leaves most of us unprepared for death when it arrives, making things harder for the loved ones left to manage our affairs.

A new report looks at the cost of dying in the United States, from the material costs to the emotional and physical toll it takes on those left behind.

The report was created by Empathy–a company that helps people manage the logistics and emotional hardships associated with death. The company surveyed almost 1,500 people who had experienced the loss of a close family member in the last five years. Their goal was to try to quantify and better understand what they went through.

Here are some interesting findings from the report:

  • 3 million people die in the U.S. every year
  • 68 percent of Americans who are grieving suffer physical symptoms
  • An average of 540 hours of work are spent settling a loved one’s affairs
  • It takes families an average of 12.5 months to resolve all financial matters after the death of a loved one
  • 20 percent of the workforce is grieving a recent loss at any given moment

The Financial Cost

Perhaps the most astonishing figure from the report was that the average direct financial costs related to the death of a loved one can reach $20,000. This includes things like the cost of the funeral and financial and legal matters that must be dealt with when a person dies.

The report found that the average cost of a funeral is $7,848, the cost of financial matters averages $4,384, and legal matters cost an average of $4,967. Using these numbers, it’s easy to see how the cost can easily climb to $20,000 and beyond. And these are only part of the financial costs associated with dying.

Other financial costs the report included in their analysis are those associated with the total funeral costs, like payments to the funeral home ($3,584), the burial plot ($1,841), catering and refreshments ($602), hiring officiants, priests or other clergy ($472), music ($136), and invitations ($111).

How Loss Affects the Mind & Body

There are other, less tangible consequences as well—like grief—which is a highly personal experience that people are grappling with while having to contend with all the tasks associated with the death of someone they love, which only complicates the process further.

The stress and emotional strain associated with a loved one’s death often lead to physical symptoms. The report found that 93 percent of those surveyed suffered from at least one physical or mental symptom after their loss, 83 percent suffered anxiety, with 46 percent suffering for a few months or more. None of this seems surprising, considering that grief can be an overpowering emotion, and after the loss of someone close to us, we have an immediate increase in tasks and responsibilities to manage the affairs of the one we’ve lost.

Other physical and mental symptoms that lasted more than a few months reported in the study were:

  • Memory problems (30 percent)
  • Unusual anger or irritability (30 percent)
  • Weight loss or gain (33 percent)
  • Irregular sleep patterns (38 percent)

And the above numbers increased significantly if the person happened to be the executor of the deceased person’s estate–a job that comes with considerable responsibility and its own unique stresses.

How to Prepare–for Peace of Mind

Although our views about death are highly individual, there are things that we can all do to help prepare for it when the time comes. Preparation can help us relieve some anxiety, think about what we want, as well as think through some of the logistics, which will help others have a clear roadmap of what we desire and how to make it happen.

There are a lot of things to consider when we begin thinking about our own death. And although this can initially seem an anxiety-producing activity, it can actually be very grounding and help give one a sense of peace.

Here are some things to think about, broken into different categories:

If you are diagnosed with an illness and need healthcare, here are some considerations:

  • Do my loved ones fully understand my condition and what to expect?
  • Have I expressed exactly what medical interventions I want and ones I don’t?
  • At what stage do I want to waive further medical interventions or procedures?
  • Do I have a do not resuscitate (DNR) order that would be enacted after certain procedures or surgeries?
  • Have you chosen someone who can make your healthcare decisions when you can no longer make them yourself? Do they know your wishes?
  • If the healthcare system can no longer help with your condition, what would you like to happen? For example, would you like to be at home?

Personal Considerations

  • What are my beliefs about death? Do I need to make peace with any aspect of this process?
  • Are there any family or friends I want to talk to, and share love and gratitude with so they know how I feel about them?
  • Is there anyone I may have had difficulties with and want to make peace with before I die? Perhaps there is someone who may need my forgiveness or a broken relationship I want to repair.
  • Who would you like to leave your personal belongings to? Make notes as to who should have what so you can make sure people get what you want them to have.
  • If you are a single parent with young children, who will care for them after you are gone?
  • If you have pets, who will look after them?
  • Where are all your personal photos/videos? Are they on a computer? If so, does someone else know how to access them?
  • Have you labeled people in your photos? And where do these personal treasures go when you die? Will they go to children or other family? Having personal effects like photos well labeled is important so your family can identify others later on.

Funeral/Memorial/Celebration of Life Planning

  • What would you like to happen to your body after you die? Do you want to be embalmed? Buried? Cremated? Or do you want a green, or natural burial?
  • Do you have a preference for what casket you would like or how you would like to be buried? If you would like to be buried, where will it be?
  • Would you like a burial plot, headstone or grave marker? If cremated, where would you like your ashes scattered, or who would you like to keep them?
  • Do you want a ceremony of some kind? If so, what kind of ceremony would you like, and how would you like people to celebrate you?
  • Would you like flowers, and if so, what type? Or would you like people to donate to a charity you believe in instead?
  • Would you like someone to deliver a eulogy or have several people speak about your life? If so, speak to them ahead of time.
  • Should you pre-pay for funeral/burial/cremation services ahead of time? It can often be less expensive when done in advance.

Legal Considerations

  • Consider writing a will to make your wishes known and have them carried out legally.
  • Do you want someone to be your power of attorney?
  • Make a list of your assets so you can decide who you would like to have them.
  • Organize and store important documents and passwords so they can be easily found and accessed.
  • Talk to your loved ones about your wishes.

If you need a little inspiration, BJ Miller, a practicing hospice and palliative care physician, gives a moving TED talk about what really matters at the end of life.

Here are some resources to help guide you through the process and keep you organized as you go:

Final Thoughts

Although this all might seem a bit daunting initially, you can do what is comfortable and take your time. Choose which tasks are important to you, and work your way through them at your own pace.

Although some people are blessed to know that they are coming to the end of their lives and can prepare, many of us will not know in advance.

Thankfully, we can choose to do any of the things above at any time. Perhaps more important than anything is the way contemplating death can remind us of how precious life is and how important it is to cherish every moment and let the people in our lives know what they really mean to us.

Complete Article ↪HERE↩!

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How hospice helps patients and families navigate end-of-life care

— Former president Jimmy Carter’s wish to enter hospice care has raised awareness about how families cope with the dying process

By and

The decision by former president Jimmy Carter to stop medical intervention and spend his remaining time at home with his family has brought new attention to hospice care.

Hospice care is a form of medical care given at the end of life, when medical interventions to prolong life are stopped, and the focus shifts to supportive care and helping both patients and their family members cope with the dying process.

By entering hospice, Carter has taken on “one of the most serious decisions anybody can make in their life,” said William Dombi, president of the National Association for Home Care & Hospice. “I think it’s a good thing that people are gaining awareness of hospice through this. Every generation needs to learn about what hospice is, how valuable it is and that it’s an option — a great option — that is available to them.”

We answered common questions about hospice and end-of-life care.

What happens when you go into hospice?

Hospice describes a specific type of supportive care for people near the end of life. A defining principle of hospice care is that it does not include medical interventions focused on curative treatments or prolonging life. Patients may decide to enter hospice care because they have run out of realistic treatment options, or they may decide that want to focus on quality of life and no longer want invasive medical treatments.<

“You need to get good medical care for the stage of illness you’re in,” said Leslie Blackhall, a physician and section head of palliative care at University of Virginia Medical Center. Hospice care doesn’t shorten life, “it’s just a more appropriate form of care,” she said.

Some people who need extensive care may spend their final days in a nursing home or assisted-living facility. But many people “entering hospice” simply go home to be with their families. A patient’s hospice care plan may include a team of nurses and home caregivers, therapists, social workers and religious advisers, Dombi said. The plan likely will include medical equipment, such as a home hospital bed, as well as medications to ease pain, anxiety and ensure comfort.

Most insurance plans cover the costs of hospice care. For those who don’t have insurance, many hospices will provide free care and, state Medicaid systems also may assist with the cost, said Phil Santa-Emma, medical director of hospice and palliative care services at Mount Carmel Health System.

How long do people live in hospice care?

Hospice is set up for patients who are expected to have less than six months to live. But there’s no way to accurately predict how long the dying process may take.

“A significant number of people live less than 15 days and a significant number more than a year,” Dombi said.

Even among very sick patients in intensive care units, doctors’ predictions of the timing of death are only accurate around 20 percent of the time.

“So many people are under the misconception that hospice means I’m dying right now,” Santa-Emma said. “We have to reframe that. Hospice is going to help me live the very best I can, and even though I have the terminal illness, I know I’m mortal, and I know I’m going to pass away. But between now and then, how do I live the best that I can?”

What happens if you live longer than expected?

Sometimes people in hospice care exceed doctor’s predictions for how long they might live. When this happens, the hospice provider will require the patient to be assessed every few months to decide whether the patient remains terminally ill, said Santa-Emma. If patients are stable and the disease is no longer showing signs of progression, “then you graduate from hospice,” he said.

Patients who continue to meet the criteria for hospice are allowed to continue the supportive care.

Margaret Drickamer, the associate medical director of inpatient hospice care at UNC School of Medicine, said it can be upsetting for family members and patients who have prepared for death, only to be told the patient has hit a plateau and is being discharged from hospice care.

“I have the unhappy job of saying this person isn’t dying fast enough,” Drickamer said. “It’s very hard on the families.”

What are the four levels of care for hospice?

Routine care, which is the predominant form of hospice care, is provided in the home — or wherever the patient lives. Several times a week, hospice nurses visit to assess the patient and provide medical services, and an aide visits to help the patients with personal needs such as bathing. Social workers and a chaplain or other spiritual adviser visit as needed.

General in-patient care is for patients whose symptoms are rapidly changing and can no longer be managed at home. These patients are admitted into a facility such a hospital or hospice facility to receive around-the-clock care.

Respite care is to give caregivers a break. The patient is admitted to a hospital or skilled nursing facility for a short period of time so family members and friends can take time for self-care.

Continuous care is for patients who are actively dying and need eight hours or more of continuous care from nurses and aides. Hospice sends a medical professional to the home to provide that care.

What’s the difference between hospice and palliative care?

Hospice care and palliative have a lot in common, but they are also very different.

Palliative care primarily focuses on managing pain and symptoms to ensure a chronically ill patient has a good quality of life. Some patients in palliative care may still be pursuing treatments to cure serious illness or slow decline.

A cancer patient, for instance, may still be receiving chemotherapy or radiation treatments to slow the progression of the disease, but also be given palliative care, such as medications to focus on pain and symptom relief, special equipment to make life at home easier and mental health support.

“When they refer to palliative care, we are primarily on symptom management,” said Jennifer A. Winegarden, a senior associate consultant for hospice and palliative care at Mayo Clinic Health System. “The focus is to truly palliate. That’s the definition – to relieve suffering.”

Someone can be on palliative care for years before they’re transferred to a form of hospice care.

Hospice is the final stage of palliative care in which the person has decided not to seek curative treatment, but is still given a wide range of supportive care for both patients and families.<

When should someone seek hospice care?

The answer depends primarily on the patient’s wishes, but can be influenced by their age, quality of life, prospects for future treatments, input from family members and the advice of doctors. Someone in their 40s with a young family, for instance, may be willing to continue invasive medical treatments longer than someone twice that age.

Drickamer said the answer boils down to this: How do I want to spend the time I have left?

Doctors may suggest hospice care for patients who are frequently returning to the hospital, sleeping more than 12 hours a day, eating less or losing weight or speaking only a few words a day, Winegarden said.

“The biggest issue is that people associate hospice with giving up, and I disagree,” Winegarden said. She said some of her patients have told her they haven’t “lived this well for years.” Hospice care is about bringing patients the greatest support and comfort with “the time they have left,” she said.

It takes courage for anyone to shift gears and focus on pain management and care instead of preventing or treating a chronic condition, Drickamer said. That’s why President Carter’s example is so important, she added.

“He’s gotten to a stage where he wants comfort and dignity,” she said. “He’s demonstrating to people how to do that.”

Complete Article ↪HERE↩!

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What it means to enter hospice care as Jimmy Carter elects to stop medical treatment

— The Carter Center said he wants to spend his remaining time at home with family.

Former U.S. President Jimmy Carter reacts as his wife Rosalynn Carter speaks during a reception to celebrate their 75th wedding anniversary in Plains, Georgia, July 10, 2021.

By Mary Kekatos

Over the weekend, former President Jimmy Carter entered home hospice care, the Carter Center announced.

The center said in a statement that the oldest living president, who is 98 years old, had elected “to spend his remaining time at home with his family and receive hospice care instead of additional medical intervention” after several hospital stays.

“He has the full support of his family and his medical team. The Carter family asks for privacy during this time and is grateful for the concern shown by his many admirers,” the statement read.

Experts explained to ABC News what it means to enter hospice care and what it may entail:

What is hospice care?

Hospice care is a type of end-of-life care meant to maximize the comfort and quality of life of a terminal patient.

“Typically, hospice care requires a referral from a physician who agreed that hospice care is appropriate for the patient and so we certified that the patient’s life expectancy is six months or less, based on our best knowledge and data we have if the disease runs its expected course,” said Dr. Jay Bhatt, an internist and geriatrician in Chicago and an ABC News contributor.

Bhatt said a patient suffering from several conditions can enter hospice including cancer, dementia, kidney failure, recurrent infection and more.

“Entering hospice means your caregivers are focused on managing your symptoms…and it’s oriented around alleviating suffering, during that projected time of life,” he said.

Several needs are addressed when a patient is in hospice care including physical, psychological, social, and spiritual, according to the National Association of Home Care and Hospice.

Hospice care may be misconstrued as a process used to accelerate the worsening of someone’s condition so that they may pass, but that is not the case, Bhatt said.

“This is not intended to speed up the dying process or reduce their time that they may have,” he said. “It really is focused on addressing physical health, managing their symptoms that create suffering, [and] their emotional and spiritual health.”

What is included in hospice care?

Hospice care can include a broad set of services including physician care; nursing care; a home health aide; social work services; physical, occupational, and speech therapy; and bereavement services for the patient’s family, according to the NAHCH.

These services can help manage medication for pain or other conditions, supply emotional support for mental health needs and therapy for mobility that help alleviate suffering, Bhatt said.

“Hospice care at home relies primarily on the family or personally paid caregivers to provide that day-to-day care,” he said. “But you can have a nurse or physician on call 24 hours a day to help with medications for pain or trouble breathing [or] other symptoms.”

If symptoms become too difficult to manage, a person can receive inpatient hospice care at a facility.

While hospice care may be covered by employer-provided insurance or private insurance, it began being covered by Medicare in 1983.

According to the NAHCH, more than 1.6 million Medicare beneficiaries received hospice services in 2019 with Medicare expense totaling about $20.9 billion.

Qualifying for hospice care

Experts told ABC News that it’s a complex process filled with hours of discussion before a patient can receive hospice care.

PHOTO: FILE - Former U.S. President Jimmy Carter smiles during a book signing event in Midtown Manhattan, March 26, 2018 in New York City.
Former U.S. President Jimmy Carter smiles during a book signing event in Midtown Manhattan, March 26, 2018 in New York City.

A hospice physician and a regular physician, if the patient has one, have to certify that a patient is terminally ill. The patient has to accept the care as opposed to care to cure their illness, and the patient has to sign a statement choosing hospice care.

“Clearly, the recognition is that Jimmy Carter lived an incredible life; we should all be so lucky to live a life that is so full, rich and rewarding,” said Dr. John Brownstein, an epidemiologist and chief innovation officer at Boston Children’s Hospital, and an ABC News contributor. “At the end of the day, it’s about patient-centered decisions and their wishes and in this particular case, I’m sure there’s been a lot of consultation with medical teams, and family.”

He continued, “These things are are complicated, you know, long conversations that require many layers of discussion within that, you know, reaching out very quick decisions that are, they’re done without, you know, without the guidance of the whole care team and family.”

How is it different from palliative care?

While hospice care and palliative care are often used interchangeably, they’re not the same, experts said.

Both are about offering compassionate comfort care, but patients in palliative care might have their symptoms treated as well as receiving treatment with the intent of curing their illness.

Additionally, while hospice care requires physicians to sign off, palliative care can begin whenever the physician and patient decide and at any stage or illness — and the illness is not required to be terminal.

“Hospice care is really focused highly on the comfort of that patient,” Brownstein said. “So, comfort care without any sort of intention for cure, whereas palliative care is broader ’cause it’s comfort care, but it could have some component of curative intent.”

Complete Article ↪HERE↩!

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What Happens When You Die?

— Hospice Workers Share Conversations With Patients as They Near the End of Their Life

By Lyssa Goldberg

Talking about mortality can definitely be a frightening subject. But for some people, like those who work in hospice, discussing what happens when you die may feel like a more natural conversation to have. 

So, what does it feel like to be days from death? And what happens to you when you die? While some of these questions may never be answered, we spoke to several hospice care professionals across the U.S. to find out what they’ve learned from their patients in their final days as they prepared to make a transition from life to death. 

“Very few people are afraid of death. They’re afraid of dying, the process leading to death,” says Travis Overbeck, National Director of Patient Experience for Seasons Hospice.

Of course, no one truly knows what comes next, but some patients have a very clear idea of what they believe should happen once they die, says Overbeck. Hospice workers like himself get to explore their patients’ belief systems and ask them what they’d like their death to look like.

For instance, in the Buddhist tradition, there’s an expectation of silence at the time of death, according to Overbeck, and there should not be any wailing or grieving at the individual’s bedside so they can make their way peacefully into the next life.

“I’ve seen so many patients at the time of death. Most often, there’s this sense of peace and calm, and it’s really beautiful,” Overbeck says. “That’s why I do what I do. It’s all about bringing that peace and comfort to our patients at end of life.”

Here are some of the most common themes that have emerged from end-of-life conversations with hospice workers.

“Would you mind praying for me?”

Overbeck, a chaplain who sees patients of all faiths and backgrounds but practices Christianity himself, remembers his final conversations with a Jewish patient in her last days of life. She said, “I know you’re Christian, and I know I’m Jewish, but would you mind praying for me?”

“What would you like me to pray for?” Overbeck replied.

“I pray that when I die, it will be peaceful, and I will be comforted,” was the patient’s request.

After some conversation, they prayed together and the two hit it off. When Overbeck returned to the hospital the next day, the patient’s friend found him in the hallway. She told Overbeck that the patient had become unresponsive—but before she stopped speaking, the patient asked her friend to have Overbeck pray for her again if he returned.

Overbeck entered the patient’s room and, knowing that hearing is typically the last sense to go, he reintroduced himself and said, “I’m going to go ahead and pray for you.” He prayed again for peace and a comfortable transition. And at the end of his prayers, suddenly the patient began to talk.

“I’m going on a journey to a place I’ve never been before,” she started, “and everybody is sparkling, and everybody is smiling at me.” The patient died about 45 minutes later.

“I don’t care what belief system you are or aren’t. At the end of the day, that’s real. That was her experience,” Overbeck says.

Bringing life closure

Much of Overbeck’s work is dedicated to tying up loose ends and bringing his patients’ life to closure, whether that’s reuniting family members that have become estranged or ensuring the patient’s legacy is preserved. “There’s a process in dying,” Overbeck says. “It’s the opportunities to say, ‘I love you,’ opportunities to say, ‘I forgive you,’ opportunities to ask for forgiveness, opportunities to say, ‘Goodbye.’”

Overbeck recalls another conversation with a patient who was the CEO of a very large, well-known company. “Travis, I had it all,” the CEO told Overbeck. “I had the vacation homes. I was able to send my kids to the finest schools. We traveled the world. But at some point, I lost my focus. I began to value my job and my money more than anything else.”

Along the way, it cost him not only his marriage but his relationship with his kids. In fact, the patient had a grandchild he’d never even meet. Overbeck asked the patient for permission to reach out to his family. A few phone calls later, they were flying into town to visit the hospital.

Overbeck helped facilitate conversations between the patient and his family members, and while he acknowledges it wasn’t easy, he was ultimately able to bring them a feeling of closure. Most importantly, the patient was able to meet his grandchild for the first time. The patient died later that day.

“The biggest realization that I’ve had is that we all have a finite amount of time—it’s about how you’re going to live with that time,” Overbeck says.

Cultivating gratitude

Carolyn Gartner, licensed clinical social worker with Visiting Nurse Service of New York Hospice and Palliative Care, began practicing meditation and studying Buddhism around the same time she started pursuing social work.

Working in hospice care, she’s found her patients hold a perspective of gratitude and acceptance that parallels what she’s been taught through her meditation practice. “I feel my older patients really understand the idea of letting go, and not letting small things bother you,” Gartner says. “We get so caught up in the day-to-day, and I see my older patients are a good role model for how those things pass.”

Gartner works with a diverse array of patients throughout Brooklyn, from celebrities to patients in public housing. Recently, she and a chaplain from VNSNY Hospice went to visit a Jamaican patient who loves Bob Marley music.

The patient’s daughter told them that her mother had experienced a severe explosion of pain the day before, so Gartner prepared to handle the situation sensitively, thinking perhaps the patient wouldn’t want to listen to music that day.

When they walked in the door, however, the patient was wearing a big smile on her face and said: “Okay, ladies, when are you starting the Bob Marley?’”

“I do think that this work, almost every day, reinforces to me: We are energy. We are light. There is a spirit,” Gartner says.

At end-of-life, people like to reflect on their life story, Gartner says. Patients will take out old photos and share stories of joy and pain all in one session. Having studied screenwriting as an undergrad at New York University, Gartner uses these same storytelling techniques with her patients to learn and listen to their stories.

“My observation is that people will often die the way they live, so it’s really interesting to see how people process what they’ve gone through,” she says.

While the patients may seem ready to accept what comes next, Gartner says it’s the families who often need help coming to terms with it. VNSNY Hospice assists with the pre-bereavement process for family caregivers so they can see beyond the grief and enjoy the time they have left with the patient.

“Patients almost always know what’s going on in their body. It’s the family who doesn’t,” she says.

Seeing lost loved ones

Over the years, Kalah Walker, patient care administrator for VITAS Healthcare, has seen numerous hospice cases where the patients will call out to their loved ones who’ve passed, as if they’re seeing someone that everyone else cannot.

Often, they look out into the distance, and the hospice worker knows it’s the name of a family member who’s no longer with us. Generally, this happens within the last days of their life, Walker notes.

“You know what they’re seeing when they’re looking off into the distance…,” she said. “Once they do that, they’re able to let go.”

Sometimes, the patients will ask their hospice worker if they can see the family member too. Walker says it’s important to be there in the moment with them, agree, and allow the moment to happen as the patient is experiencing it. “There’s a nurse who gets to be there to bring life into this world, and we get to stand there and hold a patient’s hands or their family’s hands as a life leaves this world,” she says.

Walker says the real work with end-of-life care comes after the patient passes, however. “Hospice isn’t just about death and dying. It’s about learning about what’s really important in life and keeping those memories alive,” Walker said.

VITAS’ staff supports families who’ve experienced loss with programs like gifting them memory bears as reminders of their loved ones or butterfly release ceremonies. At the butterfly release ceremony, families will open a package and release butterflies into the sky, giving them a chance to reflect and experience a feeling of release themselves. “I’ve seen the butterflies sit there in the moment. You notice they kind of hover around, and it’s almost as if that butterfly is the loved one,” Walker says.

Sources

  • Travis Overbeck, National Director of Patient Experience for Seasons Hospice
  • Carolyn Gartner, licensed clinical social worker with Visiting Nurse Service of New York Hospice and Palliative Care
  • Kalah Walker, patient care administrator for VITAS Healthcare

Complete Article ↪HERE↩!

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My husband wanted assisted dying, but was denied.

— It’s only right people should have the option

Paul and Alain on their wedding day.

By Patrick Kelleher

In September 2019, Alain du Chemin was diagnosed with a brain tumour.

At the time, he was living with his partner of eight years, Paul Gazzard. The pair had met on Grindr in 2011 – Paul was such a novice to the app that he couldn’t get his profile picture the right way up, and Alain sent him a cheeky message saying he had neck ache from trying to look at his upside-down face.

“For some bizarre reason I thought it was hilarious, and we just got chatting, met up, and then the rest is history. Very quickly I moved in with him,” Paul recalls.

Their life together was a happy one, but after months of suffering with headaches and disorientation, Alain was told he had a tumour, and that it was terminal.

Paul (L) and Alain (R). They are sitting outdoors on a bench and both men are laughing.
Paul (L) and Alain (R).

He was a pragmatic person, Paul says, and immediately started researching his options.

“As he was reading more and more about what the end game might be, he discovered a lot of things – that people with brain tumours, towards the end, may not have all their faculties, can’t speak properly, can’t do a lot for themselves, become really confused, and so on. And he decided at that point that wasn’t really something he wanted to go through.

“That’s when he started looking into the whole assisted dying process and what it entails.”

Assisted dying describes the act of a terminally ill person being prescribed drugs, at their request, that end their life. A UK parliamentary briefing uses the term to cover instances where the patient self-administers the drugs, and where healthcare professionals administer them on request.

By that time, Alain was living back in Jersey, where he was from originally. The problem was that assisted dying was illegal there, as is the case in most European countries.

One of the few places where assisted dying is possible is Switzerland. Many people from across the world flock to the country so they can die on their own terms.

Paul and Alain on a plane on their wedding day. Both men are wearing tuxedos and the plane has been decorated.
Paul and Alain on a plane on their wedding day.

It took a while for Paul to realise just how serious Alain was about dying in Switzerland.

“He started saying, ‘I want it to be a celebration, I’d like to have certain close friends go with me, we’ll have a great party before I go off’. It was quite a lot to take in.

“Previously I had no view on assisted dying at all. I mean, thinking about it, why would you unless you or someone you loved were in that situation?

“You could tell he was absolutely adamant this was what he wanted to do… I think what I struggled most with was timing, really. When do you know now is the right time to go?”

‘Laws must change to a more humane model’

In order to undergo assisted dying, you must be considered competent to make that decision at the time of death. That presents specific challenges for people with terminal illnesses like brain tumours – for Alain, it meant he would have to die when he was still relatively healthy.

“He was fully supported by me, close friends, his family – we knew the sort of person he was and if he had something in his head, it was going to happen.”

While Alain explored his options, he and Paul worked on making the most of their time together. On Valentine’s Day 2021, they got married with around 20 guests in attendance.

Paul and Alain on their wedding day. they are pictured signing the marriage register in a registry office.
Paul and Alain on their wedding day.

Shortly afterwards, Alain’s condition started to deteriorate rapidly.

“At that time, I think he was feeling things were changing quite a bit, and the planning really had to be kicked up a bit,” says Paul.

“We have a friend who’s a pilot and he was able to get a private plane to take us to Switzerland, which was pretty much one of the only ways during that time [at the height of the COVID-19 pandemic] that we were going to be able to get there.”

The cost of hiring a private plane was going to be tens of thousands of pounds – and it caused “an enormous amount of stress”.

In the face of all those pressures, they ran out of time. Alain reached the point where he would no longer be considered competent enough to choose to undergo assisted dying.

On 1 May, 2021, Alain passed away in a hospice after a period of rapid deterioration.

Alain never had the chance to go through assisted dying – but Paul says he might have if the law was more humane.

Paul and Alain on their wedding day. They are both wearing suits and are standing on a red carpet outside a private jet.
Paul and Alain on their wedding day.

That’s why Paul is now a campaigner for better assisted dying laws. He’s working with Dignity in Dying, a campaign group that believes everybody should have the right to a good death.

YouGov polling shows there’s broad support in the UK for a change in the law. Three out of four people believe terminally ill adults should be allowed to choose when their lives draw to a close.

“It’s about choice,” Paul says.

“I think it’s only right people should have the option available to them.”

Complete Article ↪HERE↩!

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How do you want to die?

— Society doesn’t often talk about dying, but an end-of-life doula in Durango says we should


Christine Pollock, an end-of-life doula, says the quality of one’s dying experience is largely dependent on his or her preparation going into it.

By Reuben Schafir

Years before she received any training to prepare for working with those nearing the end of life, Christine Pollock gathered a small community of supporters as a friend of hers prepared to die.

“As time progressed and she got closer and closer to death, she embodied more and more light,” Pollock said. “Even though she was in so much pain and suffering, she became like this beacon of light.”

It was July 2013. As Pollock’s friend took her final breath, a powerful breeze cut the still heat of the day and poured through the window.

“The veils are very thin between being on this side and being on that side,” Pollock said. “I think our hearts can hold a lot more than we allow them to, especially when it comes to compassion.”

Pollock is an end-of-life doula in Durango. She describes her work as that of a front-line caregiver who provides comfort care and views herself as a conduit – she helps facilitate the dying experience that those passing wish to have.

Just as doulas transition people into the world, end of life doulas transition people out of it.

The work of an end-of-life doula is not medical, at least in Pollock’s case. She does not administer medication or take the place of hospice or palliative care.

In his 1971 elegy for the aged, “Hello in There,” the legendary folk artist John Prine wrote of the solitary old folks to whom he delivered mail during his days as a letter carrier. It’s refrain concludes, “old people just grow lonesome, waiting for someone to say, ‘hello in there, hello.’”

It is this experience that end-of-life doulas hope to prevent.

“The whole thing is about changing a cultural paradigm around how we view death, taking it from a fear-based perspective, a scary experience, into a sacred and beautiful transition,” Pollock said.

As long as people have been living, they have been dying. The experience, in many cases, used to be as much an exercise in mourning as it was a celebration of life. As communities grew, it became easier for people to slip through the expanding gaps in the social web, Pollock says. And as the bonds of community have weakened, the fear of death has increased.

“Everybody rallied around a birth, everybody rallied around a death and honored their life, honored their gifts,” she said.

She views her work as that of a stopgap. It takes the place of a community – or facilitates the creation of one – to celebrate a life as it comes to an end. Doulas see death as a transition of a threshold; the quality of that transition, Pollock said, hinges on ones preparation.

She began this work in an official capacity after a six-month training at the Conscious Dying Institute in Boulder, which she attended in 2019. The extensive training asked participants to read in depth on the topic, come to terms with their own grief and practice creating plans for the final three months of someone’s life.

Pollock leads meditation and wellness retreats as a day job, as her practice as an end-of-life doula is not a full-time occupation. The line between client and companion appears blurred in the cases when she counsels those nearing death for no compensation.

In the last year, she said she had three paying clients, between eight and 10 whom she worked with free of charge, and an additional smattering of telephone consults.

The work of an end-of-life doula is different according to the needs of each client and the person doing the work. Pollock works from a toolbox filled with guided meditations, music, massage therapy, Reiki and an assortment of literature and mantras.

A lack of discussion around death as a society inhibits planning; Pollock’s primary mission is to encourage those approaching death to develop some sort of plan. She works with clients to create “vision maps” that could include anything from exercise in forgiveness to visiting the ocean.

“We fill the care gap,” she says.

The soft-spoken caregiver is mindful of individual religious or spiritual beliefs and seems adept at fitting her own work into the existing understanding of life and death that a client and family maintain. Whatever one’s conception of an afterlife may be, Pollock works to ease the transition into it.

Although working with an endless stream of dying clients could foist an undue weight on an end-of-life doula, she says the work enriches the meaning in her own life.

“It’s truly a calling,” she says. “It’s a life purpose and everything that I have done up until this point in my life has led me to this precipice of the final work that I will do with my life.”

Pollock hopes that eventually, her line of work will be rendered unnecessary by a change in the cultural conception of death.

“We’re headed back to honoring death as a vibrant part of life, to take the fear out of it,” she said.

Complete Article ↪HERE↩!

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Preparing for the natural end of our lives

— Most of us don’t want to talk about death. But we need to be prepared for the inevitable.

By

Our culture soft-soaps the inevitability of death.

Yet, at some unknown time, we’ll all come to the natural end of our lives. This is certain. But our culture doesn’t help prepare us for this reality. In today’s world, adults can talk about almost any subject — other than death. It’s not a topic that comes up in day-to-day conversation, in coffee shops with friends, or at social gatherings. It’s a taboo subject.

We don’t discuss death with our kids. We’re fearful they’ll be scared. Children are often excluded from funerals and memorial services. Indeed, we’ve transformed “funerals” into “celebrations of life.” I never understood that. To me, a celebration of life is a birthday, not the day life ends. Death is the enemy to be conquered or ignored, until we can’t.

Over my long career as a psychologist, I’ve had the privilege to work with many adults who were terminally ill, supporting them as they came to the end of their lives. They taught me a great deal about living and about dying. There’s a long line of adults who hope to die in their sleep. But that’s not always the case. None of us really know how we will experience our ending or what we feel or think, particularly if we have some time when we are actually dying.

Several years ago, my wife and I were flying back from Europe. Somewhere over the Atlantic Ocean, our jet lost altitude so quickly that all of the overhead cabins opened, and the flight attendants were knocked to the ground. Passengers started screaming. The plane shook violently, and it was several minutes before the pilot came on the loudspeaker. All of us thought this was the end. To my surprise, a great calm came over me. I reached over to hold my wife’s hand, thinking we should be connected if we were coming to the end of our lives. I hope that when my end does come, I will feel the same way.

So how can we be better prepared for the natural end of life?

Consider your beliefs about death. Many religious adults feel confident that death will precede an afterlife. None of us know for sure what will happen when we die. It’s helpful to reflect on your beliefs, fears and thoughts about death. It’s also helpful to consider how our thoughts about death impact our lives.

If you were to come to end of your life tomorrow, how would you feel about how you’re living your life today? Many of my patients, when diagnosed with a life-threatening disease, make radical changes in how they live. It’s not necessary to be diagnosed with a dread disease to consider how you’re living and whether it’s aligned with what’s important to you.

Reflect on how you cope with loss of control. Many of us older folks are more comfortable with the reality of death but dying is a different matter. There’s a loss of control, loss of agency, and loss of independence, and that can be very frightening for some adults, especially if loved ones came to end of their lives with a disease that is protracted — like cancer or heart disease.

For older adults, it’s important to designate a health care proxy to make health care decisions should you become incapacitated. It’s essential for elders to consider how they want to handle end-of-life decisions and to communicate those wishes to their families. Also, be sure to discuss this with your primary care provider at your annual comprehensive visit.

Complete Article ↪HERE↩!