I Asked My Mom if She Was Prepared to Die

— Then I talked to some end-of-life experts. Here’s what I found out.

By By Shaina Feinberg and Julia Rothman

Recently, I had the following conversation with my 82-year-old mother, Mary:

Me: Are you prepared to die?

My mom: Not really. But I am prepared with my paperwork.

You might be wondering why I was asking my mom about her end-of-life preparedness. Well, when my dad, Paul, died suddenly a few years ago, we were completely unprepared.

“Dad and I never talked about what he wanted for his funeral,” my mom said. “He was 74 when he died, and he was in pretty good shape.”

On top of everything she had to do when he died, like planning the funeral, there was also the stress of finances and paperwork. “We had a joint checking account, but it didn’t have a lot of money. Our other bank account had more money, but was only in his name. I had to get that sorted out, which took ages.”

The most helpful advice my mom got when my dad died? “My best friend, Fran, told me, ‘Get a lot of death certificates because you’re going to have to send them to people and sometimes they don’t want a Xerox, they want the real thing.’ I got 15 death certificates from the funeral parlor.”

Preparing to die is complicated. How’s that for an understatement? You have to consider the emotional, spiritual and financial aspects. We talked to three end-of-life experts who unpacked how to make this extensive undertaking slightly more manageable.

According to a survey by Ethos, fewer than half of Americans have discussed their end-of-life plans with loved ones. Yet having these conversations is important, said Sarah Chavez, executive director of the nonprofit the Order of the Good Death, which provides resources to learn about and plan for death.

“These talks can be awkward,” Ms. Chavez said, “but by planning and talking about these things, it’s such a gift for the family that’s left behind.”

While you’re thinking about what to do with your body, you’ll also want to consider what to do with your stuff. “At a baseline, everybody should have a couple documents that are in effect while you’re alive,” said Michael Pevney, an estate planning lawyer with a practice in California. (He also makes videos about estate planning on TikTok.)

No matter what you decide to do with your body or your stuff, you will need someone to carry out your requests.

If you’re unwilling to ask your loved ones about their death preparations, there are other ways to broach the subject. “The easiest way is to open the family photo album and start having conversations about the people in the pictures,” said Joél Simone Maldonado, a funeral director and death educator. “The conversation always turns to what people did or didn’t like about a funeral or grieving process.” Mrs. Maldonado suggests using those conversations as a springboard to ask questions about what people’s end-of-life hopes are. And take notes.

The only upside to being so unprepared for my dad’s death is that now my mom is super prepared. “I have several folders in a cabinet that have all the things you should do when I die,” she said. “I’ve listed you as power of attorney, so you can write a check for the funeral. I’ve paid for my gravesite already. I’ll be next to Dad, under the same gravestone.”

When I asked my mom how she feels looking at the empty side of the gravestone, she said: “There’s my side. I have a place! Oh, and remember,” she added, “I’ve always wanted a mariachi band at my funeral.” Noted.


Complete Article HERE!

Is extending life by weeks worth the toll some cancer drugs take?

— Doctors push for ‘common-sense oncology’

When a treatment buys a few weeks or months but comes with with a lot of side-effects, then the perspectives of people with cancer may differ, says Dr. Christopher Booth.

People may celebrate a 2-week improvement in survival without acknowledging costs

By Amina Zafar, Christine Birak

Tom Somerville’s decision to stop medical treatment for his end-stage cancer was a personal one.

Somerville, 62, was diagnosed with colon cancer in 2021 that later spread to his liver. He had six months of chemotherapy to slow down the cancer, which he said also left him exhausted with nausea.

The Kingston, Ont., resident decided to take a break from treatment to enjoy a trip with his wife to Victoria.

“Things that you cherish change, right?” Somerville said. “I used to love being out in the bush, but now it is just nice to have a sunny day, sit with my family [and] have visitors.”

Somerville said he came to terms with his prognosis and decided to enjoy the rest of the life he has left, extending the chemo break to a full stop. He said he was relieved to not “feel crappy” from the treatment anymore.

A man stands with a woman holding an umbrella while on vacation in B.C.
Tom Somerville, left, and his wife, Katherine Somerville, enjoyed a vacation in Victoria while he paused cancer treatments.

Dr. Christopher Booth, Somerville’s medical oncologist at Kingston General Hospital, supports him in his decision.

Booth is also part of a group of cancer doctors in Canada and the U.S. who say medications with marginal benefits are overused for patients in the end stage of the disease. The oncologists have started a campaign through their website, journal articles and podcasts encouraging honest conversations about use of the drugs with cancer patients, their families and experts.

The goal of what they call “common-sense oncology” is to prioritize treatments that meaningfully improve survival and quality of life. They aim to address what they see as problems in the field, such as a lack of critical thinking in oncology training, falling standards for drug approvals and avoidance of end-of-life discussions.

Balancing hope and reality

Booth said while there have been incredible advances in cancer treatments in his 20 years of practice, there’s also an unfortunate reality: cancer can’t always be cured. He strives to convey it in a compassionate and clear way.

“Balancing … providing information but also providing hope, that’s the art of cancer care,” Booth said. “Balancing hope and reality, balancing treatment and quality of life and side-effects, that’s the tough part of this job.”

Booth said he thinks everyone would agree that a treatment that helps a patient live for extra months or years is very helpful. But when a treatment buys weeks with a lot of side-effects, then patient perspectives may differ.

In part that’s because the cancer drugs that can shrink tumours alsocome with side-effects, including fatigue, vomiting and hair loss.

A woman with long hair, seated wearing a black top and black glasses.
Not having treatment for cancer isn’t giving up, says Rachel Koven of Kingston, Ont.

Dr. Bishal Gyawali, a medical oncologist and associate professor at Queen’s University in Kingston, was motivated to press for changes when he noticed increased spending on treatments that don’t make much difference in patients’ lives while at the same time agencies didn’t put resources to what’s already been proven to work.

Gyawali previously treated people with cancer in Nepal, Japan, and the U.S. and saw the same trends there.

When attending oncology conferences, Gyawali said presenters would celebrate a two-week improvement in survival from a new treatment. Then, behind closed doors, other delegates would talk about the risks and costs of the drug.

“People are saying is this really meaningful?”

Gyawali aims to normalize asking such questions.

Quality of life and quantity

Rachel Koven’s husband, Ken Koven, was diagnosed in his late 40s with adenocarcinoma, which starts in gland cells of the esophagus tube. His cancer was found where the esophagus meets the stomach.

The father and avid runner treated having cancer like a battle, his wife said. He had nine months of palliative chemotherapy that’s given to relieve the symptoms of cancer and improve quality of life, but not meant to cure the malignancy.

The cancer spread. He then underwent radiation to the brain in Kingston, Ont. In 2016, about 16 months after the diagnosis, he died at age 49.

“For my husband, his hope was anchored in treatment,” Koven said. “However well-rounded the discussions we had, he would have always chosen treatment, and I can’t begrudge him for that because that is where he believed his strength was.”

Now, Koven feels families should ask more questions of doctors, such as:

  • How much time does this treatment offer?
  • What are the real costs and benefits of the treatment?

Koven said not having treatment is sometimes seen as throwing in the towel, but that can be misleading.

A man stands wearing glasses, a striped shirt, suit jacket and conference lanyard in front of a blue backdrop reading American Society of Clinical Oncology.
Dr. Bishal Gyawali wants people to ask whether a two-week improvement in survival is meaningful.

“Not having treatment isn’t giving up,” Koven said. “Sometimes by having treatment you are giving up. You are giving up time with your family. You are giving up a quality of life necessarily for something you are not trading off any extra days.”

Koven wrote an essay in 2018 on her experience as her husband’s caregiver in the Canadian Medical Association Journal. At the time, she was motivated “to contribute to the best possible life in the face of death.”

Now Koven advocates for the oncology field to “recalibrate” toward an emphasis on what brings the person joy rather than only focusing on treating their cancer. Finding novel treatments that will really benefit patients is also important to her.

Seek meaningful answers

Dr. Elizabeth Eisenhauer ran more than 170 cancer drug trials in Canada, the U.S. and Europe. Now retired, Eisenhauer won the 2021 Canada Gairdner Wightman Award for investigating new cancer drugs and delivery approaches, including for Taxol, an anti-cancer treatment.

“It’s a good thing we are having so much interest in finding novel therapeutics for cancer,” Eisenhauer said. “But my goodness, let’s find the answers that matter to patients, too.”

Eisenhauer recalled how in the 1980s, scientists set an arbitrary number as a standard, worldwide indicator of safe tumour shrinkage for early clinical trial research.

After that, measuring whether a tumour grew by 20 per cent on a CT scan, the definition of progression, became an endpoint, or goal, for pharmaceutical companies running randomized trials, Eisenhauer said. Randomized trials are meant to guide whether a drug should be used as a standard of care by physicians.

“You have an answer sooner [using tumour shrinkage], but is it an answer that is meaningful?” she said.

Eisenhauer would like to see cancer clinical trials include more criteria.

“I think common-sense oncology from my perspective as a trialist needs to come from the perspective of trying to be sure that the trials that we design at least can capture the information that will be of importance to those discussions with the patient sitting in front of you.”

Eisenhauer said there aren’t a huge number of game changers in oncology every year, but many are available in Canada. She said costs to patients in terms of side-effects and time coming to the clinic also need to be considered.

A patient receives chemotherapy treatment for breast cancer in France.
Randomized trials are meant to guide whether a physician should use a chemotherapy agent as a standard of care.

Despite that, other Canadian researchers looking last year at use of treatments like chemotherapy or major surgery among more than 151,000 people who died found that a treatment was commonly given — in 41 per cent of cases — in the last 30 days of life but was potentially inappropriate.

So far, Gyawali said the common-sense oncology movement is gaining momentum worldwide and he’s received positive feedback from regulators, physicians, patients and payers.

Tom and Katherine Somerville now take time every day to enjoy moments together, like walking down to the pond near their farmhouse, going for a drive on a sunny day or listening to old tunes.

For them, quality of life includes loving glances.

“You appreciate that moment and you want to take it all in and those are the simple things that really are not so simple,” Katherine said. “They’re the important things.”

How to Make End-of-Life Planning Less Stressful

— One tip: Do it over chocolate cake.

By Jancee Dunn

I recently hosted a strange family gathering: an end-of-life lunch.

It was my sister Dinah’s idea. She had been saying for months that it was time to discuss my parents’ final wishes while they were both still able to weigh in.

But I kept putting off the conversation. Who wants to think about it, whether it’s your own or the death of someone you care about?

Research shows that fewer than one third of U.S. residents have advanced-care directives, or detailed medical instructions in the event they can’t communicate their own wishes. Without such instructions, loved ones are left to use guesswork, which can be confusing and chaotic.

So I pushed past my reluctance and invited the family over to talk about everything from their positions on resuscitation and funeral plans to who will take their cats. I even tried to make things festive by ordering pizza and baking a chocolate cake.

I learned things about my family that I never knew: My mom and dad don’t want a memorial service. (“We don’t like big gatherings, whether we’re alive or dead,” my mom explained.) My sister Heather, meanwhile, wants hers to be held at Starbucks. (A Starbucks rep said that while this was “definitely a unique inquiry that we don’t get across our desks often,” they declined to comment further.)

Our lunch was occasionally weird — my dad once read that your “cremains” can be pressed into a working vinyl record, and he briefly floated the idea — but the gathering wasn’t as sad or awkward as I imagined it would be. Instead, it was a relief to chat openly about my folks’ end-of-life wishes instead of repeatedly stashing them away.

If you’ve been putting off these discussions, here’s how to get started.

Schedule a conversation.

First, ask your relatives if they’d be open to a family meeting — in person or on Zoom — and then set a date.

If you need a conversational starter, Mirnova Ceide, an associate professor of geriatric psychiatry and geriatrics at Albert Einstein College of Medicine, suggested bringing up a news story about dementia. “You can say, ‘This got me thinking about how important it is for us to talk about these issues now,’” she said.

If you are the older relative, consider initiating the family meeting yourself, Alua Arthur, an end-of-life doula and the author of the upcoming book “Briefly Perfectly Human,” suggested.

It might feel uncomfortable to broach the subject, she explained, but you can think of getting your affairs in order as a posthumous gift to your family.

You are sparing them a scenario “where they are in the midst of tremendous grief, and then they’re also trying to figure out what to do with all your stuff and where to find your passwords and everything else,” Arthur said.

Prepare a checklist.

Create a document that the whole family can access, and assemble a checklist of topics and prompts to go over, Dr. Ceide said. A good source for questions, she said, is the end-of-life guidelines from the National Institute on Aging.

The two vital things to discuss in the initial meeting, Dr. Ceide said, are who will serve as a health care proxy, acting as your stand-in for health care decisions, and what directives should be in your living will.

“We cannot exert control over the timing and nature of our death,” Diane Meier, a professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai, added. “You cannot anticipate exactly what the circumstances will be. So the most important thing to do is to identify someone you trust to speak for you if you are unable to speak for yourself when decisions need to be made.”

The institute also has a list of ways to create advance directives for little or no cost. (And Medicare covers advance care planning as part of your yearly wellness visit.)

Once you decide on your health care proxy and draft a living will, you can make it official by completing a durable power of attorney for health care, a legal document that names your health care proxy. Then distribute copies to your doctor, loved ones and, if you have one, a lawyer. (A lawyer is helpful but not required, according to the institute.)

Get reflective.

Our family had a long talk about how my parents wanted to spend their remaining years. Arthur, the doula, suggested asking: What is still undone in your life? “Because that helps you figure out where you want to place your time and energy,” she said.

We went over the things our parents still wanted to do, and how we could make them happen. My parents said they hoped to travel locally a bit more. My dad wants to attend his 65th high school reunion in Michigan (“at my age, they do it every five years”). Dinah, my sister, said she would accompany him.

Another helpful resource is the Stanford Letter Project, a free website that offers tools and templates for writing a “last letter,” a personal message of gratitude, forgiveness or regret to share with the people you love.

Consider regular check-ins.

End-of-life care is likely too big a topic to resolve in one meeting, Dr. Ceide said. She encourages families to have a regular conference call to check in.

Doing this can help you get on the same page so you’re all aware of, and planning for, issues like getting a ramp for your parents’ house, Dr. Ceide explained. You’re able to address “little things as they come so that when the bigger issues happen, you already have an infrastructure and a comfort with communicating together about these things.”

After our meeting, my father asked me to pack up a piece of chocolate cake to take home. “After all this death talk, I should probably seize the day,” he said.

Complete Article HERE!

Death doulas

— Helping people at the end of their life

By

You may have heard of a birth doula – someone who provides non-medical support and advocacy throughout pregnancy, birth and after the baby has been born. More recently, so-called death doulas – people who assist at the other end of the lifespan – have been growing in popularity.

The role of death doulas is still relatively new, so the terminology and definitions of what they are based on what they do are in flux. They are sometimes referred to as an end-of-life doula, soul midwife, death coach, dying guide, death midwife and palliative care doula. The actual term used is often down to the preference of the practitioner and how they define their work, as well as cultural norms within the country they work in.

Death doulas are known to work in Brazil, Canada, the Czech Republic, Germany, Ireland, Italy, Japan, New Zealand, Russia, the UK and the US. They tend to provide support to people with life-limiting or terminal illnesses, focusing on improving both the quality of life and the quality of death someone experiences. This can include helping with funeral plans, talking about the processes involved around death, or helping someone with their care appointments.

Sometimes, the doula’s contribution is simply about being next to the person and providing company.

The work of a death doula can extend beyond the dying person. They can provide emotional and social support to family, friends and even neighbours – typically the informal carers and social network surrounding the dying person.

Doulas help those close to the dying person with the impending loss (so-called anticipatory grief). Some also carry out errands and chores to enable them to spend time with the dying person. They may also continue to visit those people after the death to support them as they grieve. Crucially, death doulas can enhance the links between professionals and the social support around a person by helping with communications and advocacy work.

Filling the gap

With healthcare systems and informal carers typically stretched beyond capacity, death doulas can provide a means to fill the gap and provide personalised attention. Someone can access doula support either privately or, depending on the doula, through voluntary means.

My colleagues and I recently examined how end-of-life doulas can be provided by the NHS. It noted that the flexibility of the services doulas can provide was not only helpful for the dying person but also for the wider healthcare system. It helped people who may otherwise not receive support due to service gaps, strict referral criteria, or lack of social support.

Beyond supporting individuals, some death doulas see community engagement as core to their role. They are keen to share information about the dying process and grief with others. They may host workshops or death cafes. Across this work, their contributions are to normalise talking about death, dying and loss in society.

Anyone can become a death doula, and it is not currently a regulated profession. There is a wide range of doula training available internationally, including online, provided either by individual doulas or by organisations such as Living Well Dying Well.

People at a death cafe
Death cafes give people the space to talk about the ultimate taboo.

Personal experience

In addition to their doula training, doulas bring their own professional and personal experience to the role. International research on death doulas has noted that many who have become death doulas have a background in professional healthcare, social care or education, and may already have some experience with death.

Those who have trained to be a death doula can be eligible to join a community of practice. Within the UK, End of Life Doula UK is a membership organisation for doulas, setting standards for doula practice and representing doulas. Similar organisations exist globally, including the International End of Life Doula Association.

Death doulas are not a replacement for specialist palliative care and cannot prescribe drugs. Their role is to support people in having a good death.

The growing demand for death doulas is one example of how society is questioning what a good death can be and how to make it happen. Other examples include discussions about assisted dying and improving death literacy. Rather than consider death a societal taboo, there is a growing recognition that people want to value the end of life and reshape how it is experienced.

Death doulas can play a pivotal role in supporting a dying person and those around them. Their support can be emotional and practical, often bridging the gaps in existing support or helping to signpost to relevant services. Not everyone may want a doula, but those who do may see it as someone who can guide them through a significant life process.

Complete Article HERE!

“I’m not afraid of dying…

But I’m not ready to give in yet”

Lisa Brassington spoke with us in October as she was receiving support from Marie Curie Hospice, Bradford. Here she talks about how the kindness of Marie Curie staff made all the difference to her wellbeing.

By Lisa Brassington

I was diagnosed with a brain tumour in 2011. I’ve had years of radiotherapy and chemotherapy, but I’m on the very last chemo now. After that, there are no more treatment options. The tumour has started to spread to my temporal lobe, so it’s affecting different areas of my body and I’m paralysed down one side. I now need a lot of support.

I used to go to the gym three times a week and I loved food and cooking. I love reading and history. I fostered and rescued Bassett hounds. I had a Bassett hound called Ralph who I walked daily, but I had to give him up. A fantastic rescue charity found him a beautiful home and they keep me updated on his progress. I’ll never be able to have another dog. That breaks my heart.

Before coming to Marie Curie Hospice, Bradford, I’d been stuck in my bedroom at home for over eight months. My husband and I had been looking for care that whole time and couldn’t find anywhere that could support my needs. I felt so unsafe and frightened. Eventually, we found the hospice, and now I feel so safe, cared for, and even loved.

Nothing better than a hug

The Marie Curie Hospice in Bradford is fantastic and it had such an impact on my outlook. It’s not just the unbelievable care they give, it’s their kindness as well. I’ve never experienced kindness like it here, and I’ll never forget that. The staff are always smiling, and I get hugs and lots of care and attention. There’s nothing more important to me than a hug.

Before I arrived, I hadn’t eaten for a long time, so I had no energy, but the food here is delicious and the nurses encourage me to eat. Now everybody is saying I’ve got colour in my cheeks – it’s amazing.

The nurses offered to take my bed outside

There’s a lovely bath here that I can use, and I have a beautiful view of the garden outside of my room, I can watch the squirrels and birds feeding on the bird table. The nurses even offered to take my hospice bed outside if I wanted them to. Because of my condition, I wake up and I don’t know what day it is. I’ve been FaceTiming friends and family thinking it was the evening, but it’s actually been the morning. The nurses write down on a board what day it is and who is supporting me, which is so simple but so helpful for me.

When I first arrived, I told the staff that I love dark, West Indian rum. They told me I can have some here, and so I have my little rum nightcap, which is lovely. Nothing is off limits.
— Lisa

The healthcare assistants and nurses always find time to come and charge my electrical devices, which keep me in touch with family and friends. They’re constantly busy helping people, I can hear their buzzers going off all the time calling them into different rooms, but they still find time to come and charge my things for me and spend some time with me.

A sense of achievement

The hospice has got a fantastic physiotherapist team who have helped me to use the gym. I’ve even taken four steps, which is amazing. It’s not just the sense of achievement for me, it’s the feedback the team gives. I constantly get praised and encouraged. I never realised how important encouragement was until I came here. They have given me some exercises, and I do what I can to try to get my body working.

We’re all dying… I’m one of them

I’ve had a fantastic life, I’ve done everything I’ve wanted to do, I’ve been everywhere I wanted to go. I’m now doing my bucket list. I’ve jumped out of aeroplanes, I’ve gone down to the Spinnaker Tower, I just love doing something different. I’d love to go on a zip-wire, in fact I had a joke with the team here about the hoist in my room!

It was frightening when I first heard the word “hospice” because I just thought of dying people. There’s nothing wrong with dying people, we’re all dying, but it scared me to realise that I’m actually one of them. Now, I’m not afraid of dying. In fact, sometimes, I think it’s going to be a release. But, I’ve always been a fighter and I’m not ready to give in yet.

Complete Article HERE!

A cancer patient had decided how to die.

— Here’s what I learned from her.

For those with a terminal diagnosis, it’s getting easier to control death, but the process remains complex

By

I first learned about “medical aid in dying” last spring when my sister, Julie, who suffered from advanced ovarian cancer, chose to end her life — in accordance with New Jersey law — after all realistic treatments had been exhausted and the pain medicines prescribed could no longer alleviate her suffering. At that time I didn’t know anyone else who had taken this step. While Julie’s hospice social worker provided answers to our questions, there was much I didn’t know about medical aid in dying at the time she died at age 61, much that I wish I’d understood better.

After Julie’s death, Lynda Shannon Bluestein, 76, became one of my teachers. The married mother of two also suffered from late-stage ovarian — and fallopian — cancer.

In a series of conversations last fall Bluestein told me she had wanted to plan for medical aid in dying when her condition worsened, but medical aid in dying, or MAID, is not legal in her home state of Connecticut. However, it was legal in nearby Vermont, but barred to nonresidents. Last year Bluestein sued the state to eliminate the residency requirement, which put her on front pages throughout New England.

Last March, when her chemotherapy regimen become too much to bear, she stopped treatment and began hospice care. By May she’d won her court case and the right to utilize Vermont’s medical aid in dying procedures

Like others who want to use life-ending medications, Bluestein had to follow a carefully prescribed process, which begins with a terminal diagnosis. Following Vermont’s MAID law, known as Act 39, Bluestein made two verbal requests to her attending doctor, at least 15 days apart, then made a written request signed by two witnesses who were 18 or older.

As she told me, “My two witnesses had no interest in my estate and no influence on my life [and] they weren’t related to me in any way.” (This ended up later sparking a journalism controversy when it turned out one of the witnesses was a columnist from the Boston Globe, who had been writing about Bluestein.) As a final step, a second physician reconfirmed that she met all the qualifying criteria.

By October, when we first spoke, Bluestein had met all the requirements. And so Diana Barnard, a Vermont family medicine doctor who is board certified in hospice and palliative care, called in the prescription for the mix of sedatives and barbiturates to the one pharmacy in the state that dispenses them. They would be held there until Bluestein needed them and would cost her $700 out of pocket, since Medicare, her insurance provider, does not provide coverage.

I spoke with Barnard about what happens during the procedure. “It’s harder to hasten a death than you might imagine,” she said. Five powerful medications are currently used, including diazepam, digoxin, morphine sulfate, amitriptyline, and phenobarbital. Death usually comes within 90 to 120 minutes but can take longer, she explained.

Bluestein completely understood what would happen after she swallowed the lethal mix of medicines. When we last spoke by phone, she told me she worried that if she waited too long, she’d be unable to ingest the drugs or would throw them up. When it became clear over the year end holidays that her health was deteriorating rapidly, she chose her date.

On Jan. 3, she and husband, Paul, drove to a private hospice facility that provides “a safe and caring space” for patients to end their lives.

Barnard explained that when a patient is ready to take the meds, they, a relative or friend would mix the drugs with water or apple juice. It’s crucial to imbibe the entire potion within two minutes for the greatest efficacy, said Barnard. Within a couple of minutes, patients lose consciousness, she said, and “appear to be unaware and not experiencing external stimuli,” with just the heart and lungs still working. Then comes the waiting for the end.

The 2022 Oregon Death With Dignity annual summary reported rare complications such as difficulty swallowing and regurgitation, but Barnard said there are precautions that can prevent most of them. (Oregon is one of 10 states plus the District of Columbia that now allow MAID.)

For instance, Barnard makes sure her patients can swallow effectively and can drink the whole mixture at once (some people practice with a placebo or view a video enactment of how to take these drugs at bedside).

On the morning of Jan. 4, now in Vermont, Bluestein and her husband Paul got up early, he said, and after the rest of the family arrived, he gave her the premedication (which makes the patient calm and drowsy, though not too drowsy to take the next step). After 30 minutes, the hospice owner came in to mix up the life-ending cocktail. He asked her if she was ready, and according to Paul she replied, “I’m so happy I don’t have to suffer anymore.” She drank it all — quickly.

Bluestein was unconscious within five minutes, her husband said. “She looked like she had fallen asleep peacefully. … A lot of the pain that was in her face went away, and I was grateful.” She was pronounced dead by a hospice nurse after just 25 minutes.

A few weeks after Bluestein’s death, I asked Paul Bluestein about the pain she had endured. He replied in a text: “There are some things in life no one should have to see and one of them is watching someone you love in pain.” It was “intolerable” and “undescribable.”

During my last phone call with Bluestein, she made a point to say that making her plan “was extraordinarily difficult. You really have to want to do this a lot, have a fair amount of money, a lot of flexibility, and be very well connected to accomplish this.”

I understood exactly what she meant, as the same had been true for my sister, who, while suffering, had to arrange this last medical procedure.

For critics who fear that MAID could make it too easy for someone to take their own life, or to pressure someone else to take theirs, I offer Bluestein’s words, along with my sister’s experience.

It’s not an easy process, and requires deliberation and intent, and the sign-off from others. But it offers an end to much pain and suffering, and that is a gift to those like my sister and Lynda Bluestein.

Complete Article HERE!

Demand for death doulas has soared.

— Here’s how they help patients go with grace.

By Stacey Colino

What does it mean to have the “best possible death?” A growing number of end-of-life doulas are helping patients and families figure that out.

When Jerry Creehan was diagnosed with Amyotrophic Lateral Sclerosis (ALS) in January 2017 at age 64, he and his wife Sue knew they were facing a rough road ahead. For more than a year, Jerry had struggled with his balance and had been falling, unable to get up. ALS (formerly known as Lou Gehrig’s disease) is a progressive neurological disorder affecting nerve cells in the brain and spinal cord that regulate voluntary muscle movement, breathing, and other bodily functions; it eventually leads to paralysis and death.

In 2020, his condition began declining and he became reliant on eye gaze technology to move his wheelchair, and on a non-invasive ventilator to breathe. While attending a support group at the ALS Clinic at Virginia Commonwealth University, Sue heard Shelby Kirillin, an end-of-life doula, speak. Kirillin, a former nurse specializing in neurotrauma, spent two decades working in intensive care units, where she saw “how ill-prepared people are for the end of life. People don’t know how to talk to people with a terminal diagnosis. I thought we could do better.” That’s what inspired her to become an end-of-life doula in 2015.

“We knew we were in the final stages of ALS, and even though Jerry wasn’t afraid of dying, we needed someone to help us talk about it,” recalls Sue, a wound-care nurse consultant in Richmond, Virginia. “He wanted it to be the best possible death it could be, pain-free, and not filled with anguish.”

Many people are familiar with labor doulas, postpartum doulas, and maybe even abortion doulas, who provide support for people dealing with challenges related to ending a pregnancy. By contrast, end-of-life doulas work with those on the verge of dying, and their families. Also called death doulas, these professionals used to be rare but that changed during the COVID-19 pandemic. Since the virus began wreaking havoc, organizations that support and train death doulas in the U.S. have grown. In 2019, the National End-of-Life Doula Alliance (NEDA) had 260 members in the U.S.; membership grew to 1,545 doulas as of January 2024. Research has found that end-of-life doulas are most active in Australia, Canada, the United Kingdom, and the United States.

“During the pandemic, people were facing their own mortality more than at any other time because there was a lot of dying and grief happening,” says Ashley Johnson, president of NEDA, which is based in Orlando.
Offering various forms of support

Generally end-of-life doulas provide non-medical, compassionate support and guidance to dying people and their families. This includes comfort and companionship, as well as social, emotional, spiritual, and practical support (such as household help or running errands), depending on the provider’s strengths and the patient’s needs. Some end-of-life doulas help with estate planning, end-of-life care planning, or legacy planning. Others focus on helping people create an ambiance they want for their last days, facilitate difficult conversations between clients and their loved ones, or help with grief counseling with survivors.

“People don’t want to talk about death—they’re so afraid of it,” says Elizabeth “Like” Lokon, a social gerontologist who recently retired from the Scripps Gerontology Center at Miami University in Ohio and is now training to become a death doula. “As a social gerontologist, I want to bring it out from hiding and help people accept it. In some cultures, the denial of death, the separation between the dying and the living, is not as severe as in some western countries,” adds Lokon, who grew up in Indonesia.

“We labor into life, and we labor out of life,” says Kirillin. “All of us are born with life and death walking next to us.”
Changing the approach to death

Since it was formed in 2015, the International End-of-Life Doula Association (INELDA) has trained more than 5,600 doulas around the world, but the practice and training of death doulas varies considerably. There isn’t a universally agreed upon description of this type of care or federal regulations in the U.S. for becoming an end-of-life doula or oversight of their work. A study in the journal Health & Social Care in the Community concluded that the lack of a business model for death doulas creates inconsistencies in the services death doulas offer and what patients and their families can expect.

For example, INELDA offers a 40-hour training that focuses on the foundations of doula work and support for the dying. By contrast, NEDA is a membership organization that offers micro-credentials after doulas show their knowledge and proficiency in the skills involved. Other training programs offer four-week in-person courses, 12-week online courses, six-week programs, and other formats.

There’s also no standardized fee structure for end-of-life doulas: It typically ranges from $20 to $100 per hour, depending on the location and range of services that are offered, Johnson says. And some death doulas offer a sliding scale of fees or do it voluntarily, on a pro bono basis. Their services are not covered by insurance.

Regardless of how they’re trained or paid, many death doulas find the practice meaningful and fulfilling.

“People find it profoundly moving—some people use the word honor or sacred,” says Douglas Simpson, a trained end-of-life doula and executive director of INELDA. “End-of-life doulas help people take control of what their death looks like … It’s very fulfilling and not as depressing as people think.”
During the pandemic, Julia Whitty, a writer in Sonoma County, California, who had done volunteer hospice work earlier in her life, trained to become an end-of-life doula because her mother and a friend were on the verge of dying. She wanted to be better prepared personally, and she wanted to help other people with a terminal diagnosis in her social sphere.

“It’s a two-way relationship because you’re learning something from someone who’s coming to their end,” says Whitty, “and hopefully you’re helping them manifest what they want in their last days—physically, emotionally, socially, and spiritually.”

Among the things end-of-life doulas don’t do: administer medicine, monitor vital signs, make or recommend medical decisions for the client, impose their values or judgments on clients, or act as therapists.

“We meet people where they are—we come in holistically and help them navigate the final stages of life,” Johnson says. “It’s helping people face their own mortality with dignity. We’re promoting death positivity, decreasing the stigma.”
Creating a peaceful ending

Eleven months before he passed away, Jerry Creehan was put into hospice care and his wife Sue contacted Kirillin who worked with them once or twice each month for an hour at a time then more often as his condition deteriorated.

At first, Kirillin helped them talk about what death looks like and how Jerry could “own” his death. Sometimes she’d spend time just with Jerry, other times just Sue, and sometimes with both of them. As Jerry got weaker, Kirillin helped him come up with rituals to do with loved ones; she talked to Jerry about what he wanted his legacy to be and helped him write letters to loved ones. With Kirillin’s guidance, they created a detailed plan for his funeral and he designated personal belongings to be given to people he loved on his last night. Kirillin suggested they send an e-mail to friends and family members asking them to share memories and photos of time spent with Jerry.

“We got a wonderful response and put together a legacy journal,” recalls Sue who has three adult children and six grandchildren with Jerry. “I would read it to him, and it was very consoling to him to know that he had an impact on people’s lives.”

On his last evening, May 2, 2022, his breathing had become very difficult. There were 19 people in the bedroom, and someone opened a prized bottle of pinot noir to be used for communion with everyone present. Jerry was a certified wine educator, a foodie, an avid golfer, traveler, and a devout Christian, according to his wife of 46 years.

“He turned to me and said, Sweetie, I think it’s time,” she recalls. They kissed and hugged each other—family members helped put his arms around her—and Jerry said to Sue, “I love you. I always have and I always will. I’ll see you soon.” Then he winked at her and closed his eyes, she recalls. His ventilator was turned off and he passed away.

Afterwards, Kirillin and the hospice nurse stayed with him, bathed him, dressed him, and prepared his body for the funeral home.

“We did everything the way he wanted it to be done—that was a big gift to my family,” says Sue.

The Creehans’ experience isn’t unusual. In a study published last year in Palliative Care and Social Practice, researchers interviewed 10 bereaved family members about their experiences with a death doula and found that it was overwhelmingly positive. The most valuable benefit families gained was an increase in death literacy, including the ability to talk openly about death, which helped them feel empowered to care for their loved ones at the end of life. There was also a positive ripple effect as families spread the word about the benefits of using a death doula.

“People don’t want to wait for death to come and get them—they want to play the hand they were given the best they can,” Kirillin says. “We’re all going to die. I can’t change that. But I can help someone end the last chapter of their life the way they think they should. And I will sit next to them as they own it.”

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