Tag: Education

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How Hospices Can Improve Health Equity for Rural-Based LGBTQ+ Seniors

By Holly Vossel

Aging LGBTQ+ populations have few options for quality end-of-life care – particularly those in rural areas – and hospices are ramping up efforts to reach them.

Access to hospice can be challenging for many seniors in remote or rural regions. Terminally ill seniors in these locales often experience higher levels of loneliness and isolation at the end-of-life due to a lack of nearby hospices or support from family caregivers.

This isolation can be compounded for LGBTQ+ seniors with terminal and serious illnesses, according to Dr. Jennifer Ritzau, vice president of medical staff services at HopeHealth, a Rhode Island-based hospice, palliative and home care provider. She also serves as medical director of palliative care at the nonprofit organization.

“I think one of the things that feels like the tip of the iceberg for my team is loneliness and hopelessness,” Ritzau told Hospice News during the Palliative Care Executive Webinar Series. “I think increasingly in our world, sadly, many rural people are alone. I think especially LGBTQ+ elders end up alone. There are lots of places where we see that words and actions fail in being loving and supportive in that part of their life.”

LGBTQ+ communities have historically faced discrimination across the care continuum, leading to fear and mistrust that complicate their ability to access hospice and palliative care professionals, Ritzau indicated. These issues can be even more challenging for LGBTQ+ seniors than other social determinants of health such as socio-economic status, she said.

“There are resources for some other [social determinants], but when someone really has nobody that is a harder one to solve sometimes. You and your team can’t be there for them 24/7,” Ritzau said. “It is really hard [for clinicians] to walk out of that house, close the door and know that nobody’s coming back until you do later.”

The dangers of isolation

Roughly 3 million LGBTQ+ adults live in rural areas across the United States, representing nearly 20% of the nation’s overall population of this community, according to a study from the Movement Advancement Project.

Though more hospices are trying to improve access to end-of-life care among underserved communities, more work is needed to ensure LGBTQ+ seniors have quality experiences, according to Dr. Michael Barnett, hospice and palliative physician at Four Seasons. The North Carolina-based organization provides adult and pediatric hospice and palliative care across three counties in western regions of the state.

Hospices stand to improve upon their recognition and understanding of what the LGBTQ+ rural community looks like and what challenges they often have as they age, Barnett indicated.

In addition to having smaller social circles of family and friend caretakers, LGBTQ+ individuals in rural areas can also have fewer hospice providers available in their geographic regions, he said. These isolation issues are layered by the practical challenges of rural living that can create barriers to end-of-life care such as spotty internet and phone connectivity, Barnett stated.

“As seriously ill LGBTQ+ adults get sicker, they’re increasingly isolated from an outside world that gets much smaller as they’re able to do less,” Barnett told Hospice News. “And that’s even harder for rural areas where patients can sometimes have little to no cellphone coverage or internet access. They’re disconnected socially, physically and distanced from medical support structures.”

As seriously ill LGBTQ+ adults get sicker, they’re increasingly isolated from an outside world that gets much smaller as they’re able to do less. And that’s even harder for rural areas where patients can sometimes have little to no cellphone coverage or internet access. They’re disconnected socially, physically and distanced from medical support structures.
– Dr. Michael Barnett, hospice and palliative physician, Four Seasons

Though telehealth can be a window into the worlds of rural-based hospice patients, it can also represent a barrier for LGBTQ+ individuals who may lack connectivity, as well as the trust to confide in health professionals, Barnett added.

“We’ve come to rely on technology for support, but that’s a real issue for LGBTQ+ seniors who are already experiencing technical challenges, let alone trust factors and isolation,” he said. “It’s looking at the real issues of this broader community in a whole different context.”

Gender-affirming hospice care hard to find

Not only are hospices in rural regions often stretched thin in terms of available clinical resources, they can also face regulatory challenges around providing gender-affirming training for staff. Evolving state laws represent a key challenge in striving toward more gender-affirming hospice care.

Some states have recently passed legislation banning the delivery of gender-affirming care including Idaho, Indiana, Mississippi and Tennessee, among others

About 574 bills have been introduced thus far in 2023 across 49 states nationwide that include legislation related to transgender rights, according to the Trans Legislation Tracker. Around 83 of these laws have passed, 366 are actively in consideration and 125 were blocked, the data showed.

Many of the states with some form of these laws in place have large rural regions with several pockets of seniors, including LGBTQ+ communities that may be less than well-known among providers due to fear of discrimination, according to Barnett.

“It’s still fairly common to hear hospices say, ‘I don’t really have many gay or transgender patients in my community,’” Barnett said. “The truth is, you do, and many of these aging LGBTQ+ adults have never had affirming health care providers. They come from generations where gay activity was criminal or treated as a pathologic mental illness. So to suddenly expect them to be open and create that safe space of respect, quality and a good death is a big challenge, especially in rural regions where they’ve often been mistreated by bias in their own communities.”

Despite regulations within their geographic service regions, hospices must recognize the importance of ensuring that staff at all levels are trained and educated in gender-affirming care, along with the leading reasons behind disparities among LGBTQ+ communities, according to Kimberly Acquaviva, social worker and professor at the University of Virginia’s School of Nursing.

Having interdisciplinary teams that are trained in gender-affirming health care delivery practices is a crucial part of breaking down barriers among underserved LGBTQ+ seniors, Acquaviva said. This type of training is a large responsibility for leaders to instill in their code of ethics and training policies to avoid discriminatory practices, she stated.

“They absolutely have to bring attention to human rights violations,” Acquaviva said during a recent American Academy of Hospice and Palliative Medicine webinar. “Nurses have a right to speak out. Social workers also have an obligation to engage in advocacy [and] should engage in political and social action that seeks to ensure all people have equal access to resources, services and opportunities they require to meet their basic human needs. Chaplains [and] spiritual care professionals are accountable to the public faith community, employers and professionals [and] must promote justice in relationship with others in their institutions and in society.”

How to improve

Hospices seeking to address this issue need to provide employee training that has “hard empathy pieces” woven throughout, according to Barnett.

Important training elements include teaching staff about the intersectionality of community structures and social determinants that add to layers of stress, discrimination and health inequities around sexuality, gender and class, he said. This allows staff to see how these factors “stack on top of one another” in the dying process for LGBTQ+ seniors, Barnett stated.

Hospices can also instill clear nondiscrimination policies and ensure staff understand how these apply to their roles, he said. Having a staff that includes representatives of the LGBTQ+ community can also improve reach among this group through trust building and understanding, Barnett stated.

“It’s about being thoughtful of how we train on these practical and discriminatory issues. It’s also being thoughtful about hiring LGBTQ+ staff,” Barnett told Hospice News. “Seeing someone in their care team that represent themselves in some way allows them to have the language and comfort level. These things will go a long way in responding and speaking to the suffering at the end of life.”

Hospices that invest in gender-affirming care delivery improvement stand to gain in terms of improved quality, reach and utilization of their services among LGBTQ+ seniors, according to Ben Marcantonio, COO and interim CEO for the National Hospice and Palliative Care Organization (NHPCO).

Focusing on these and other underserved populations can be part of how hospices shape their strategic growth plans, Marcantio said. Hospices that actively focus on quality measures aimed at reducing health inequities have demonstrated improved outcomes among these communities, he indicated.

“The key areas of focus right now in progressing those measures towards improved goals of serving underserved communities that hospices are doing is reflected in both their strategic plan and direction, the implementation and the execution of those,” Marcantio told Hospice News. “That’s where a lot of this work gets done where there’s evidence that organizations are committed to and carrying out those should be noted. It’s having measurable outcomes demonstrating that there is an increased impact in the community in the percentage of, for example, Latino, African American or LGBTQ+ community members now being served in relation to their presence in the population of that given region or or community.”

Complete Article ↪HERE↩!

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End of life nurse shares what people see when they die

@hospicenursejulie

By Ella Scott

A hospice nurse in America has revealed her experience working in palliative care as well as detailing something many experience in their final months alive.

Los Angeles-based carer, Julie McFadden, took to TikTok last year to explain a common sign of death – ‘Visioning’.

According to End of Life Doula, visioning is when dying people believe they are talking to their deceased loved ones. They can also think that they have come to get them, or that they are in the room with them.

@hospicenursejulie What dead relatives before you die. It’s called visioning, and it’s a normal part of death and dying. #hospicenursejulie #hospice #learnontiktok #visioning #educational ♬ original sound – 💕 Hospice nurse Julie 💕

In a clip posted to social media in October 2022, Julie said: “Here is my most comforting fact about death and dying. The craziest things we see on hospice is that most people will start seeing dead relatives, dead loved ones, dead friends, dead pets before they die.”

Continuing on, the 40-year-old said that her patients don’t just start seeing their loved ones days before they die – it can happen up to a month before their death.

“We have no idea why this happens,” Julie elaborated. “We are not claiming that they really are seeing these people. We have no idea.

“But all I can tell you as a healthcare professional, who has worked in this line of work for a very long time, it happens all the time.”

Julie McFadden regularly shares insights into hospice life with her social media followers. Credit: Instagram/@hospicenursejulie
Julie McFadden regularly shares insights into hospice life with her social media followers. Credit: Instagram/@hospicenursejulie

Julie said that visioning happens so frequently that hospice workers regularly work to ‘educate the family and the patient’ on the topic before it commences. This is so that they are not ‘incredibly alarmed when it starts happening’.

She added: “And usually it’s a good indicator that the person is getting close to death, usually a month or a few weeks before they die. This brings me comfort, I hope it brings you comfort.”

Since posting the video last year, Julie’s sentiments have wracked up over 48,000 likes and 570,000 views.

The one-minute clip has also garnered over 1200 comments, with many finding solace in the carer’s admission.

One platform user wrote: “The last morning my mom was coherent she said she could already see my grandma, who died 42 (sic) years ago. In our culture we believe our dead loved ones come to lead you. We know her mom was there ready to welcome her to the other side.”

A second said: “Yep! My mother in law was telling her sister that their mother was packing a suitcase for her trip and picked out a dress for her to wear.”

“Yep I had a patient tell me his dog was on the end of the bed told me full description and name, told his wife made her smile,” said a third.

A medium headed to the comments section and wrote: “Spirit will tell us in a session they are the ones to grab our family at their time of death so they are not alone during the transition.”

Another social media user said: “My mother would often tell me that she just had a talk with my dad or one of her sisters. Started about a month before she passed and they looked good.”

Complete Article ↪HERE↩!

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Getting What You Want At The End Of Life

— Lessons From A Dying Man

By Peter Ubel

Dr. Randy Curtis was diagnosed with Lou-Gehrig’s disease in 2021 and died last February. Curtis was a renowned critical care physician at the University of Washington in Seattle (UDub!), a scholar so productive that new articles continue to come to press after his death, including a recent study in JAMA that might show a way for most of us to die the way we want to.

Many people die in ways, and even in locations, that go against their preferences. They don’t want to be put on ventilators and, yet, spend their last days in intensive care units tethered to breathing machines. They don’t want cardiopulmonary resuscitation, and, yet, receive full-on “codes” when their hearts stop.

Much of this unwanted care could be avoided if patients (aka: “people”) discussed their treatment preferences with their clinicians. But sadly, physicians frequently fail to hold such goals-of-care discussions with their patients, and even when they do engage in these discussions, a second problem often arises: they don’t know how to communicate with patients about their treatment preferences.

Even before the recent JAMA article, Curtis and colleagues had done important work to overcome these two problems. They developed a Jumpstart Guide, with simple language designed to promote conversations that are more effective. Instead of an awkward start to the conversation (“We should talk about what to do if your heart stops”), the guide would suggest a gentler icebreaker (“I want to know what is important to you so that we provide the best care to fit your goals. Is that okay?”). They even showed in a randomized trial that, when patients and clinicians use the guide, there is a significant increase in goal-of-care conversations.

This is all fine and dandy (to quote most of our grandmothers), but an effective intervention will not do any good unless people use it. Randomized controlled trials are typically designed to show whether a given intervention works when incorporated into clinical care. They are not usually designed to figure out whether clinicians and patients will actually use the intervention.

That is where Curtis’s new study comes in. He and his colleagues programmed the electronic health record to identify patients with serious illness, to prepopulate the computer with the communication guide and to email that guide to the patient’s physician. In other words, they made the intervention automatic. They didn’t wait for physicians to take the initiative: “This patient is really sick; I should recheck their potassium, order that new antibiotic and, oh, yeah, initiate a goal-of-care conversation.” Instead, they alerted physicians to the importance of holding a goals-of-care conversation, for this particular patient, while simultaneously pointing physicians toward the guide, thereby empowering them with a sense that they can effectively carry on this often difficult conversation.

This simple intervention worked. In the absence of the intervention, clinicians documented goals-of-care conversations in 30% of seriously ill patients. That number rose 34.5% among patients whose clinicians got the guide inserted into the EHR. A 4% increase might not seem like much. But think about it this way: in response to a simple, non-intrusive EHR intervention, 1 out of 25 clinicians document these important conversations in seriously ill patients who would otherwise have not done so.

Seriously ill patients deserve medical care that aligns with their goals. In the last months of his life, Dr. Randy Curtis took an important step toward making such alignment automatic.

Complete Article ↪HERE↩!

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Death is inevitable

— Why don’t we talk about it more?

Alua Arthur

Death is hard to talk about. But death doula Alua Arthur says if we want to live presently and die peacefully, we have to radically reshape our relationship with death.

 

About Alua Arthur

As a death doula, Alua Arthur help individuals and families to navigate the emotional, legal and spiritual issues that arise around death. Arthur worked as an attorney prior to entering the field of “death work.” Her organization, Going with Grace, educates fellow death doulas in nonmedical end-of-life care. Her forthcoming book, Briefly Perfectly Human, reframes how we think about dying.

Arthur was recently featured in the National Geographic television series Limitless, in which she helped actor Chris Hemsworth map out his own future death. She has been featured in the Los Angeles Times, Vogue, InStyle and more. She is a former director of the National End-of-Life Doula Alliance.

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My Husband Is Dying

— Advice from the Cancer Wars

Lou and Leida’s wedding day, 1982

The emotional and physical toll on both of us during our last year together

By Leida Snow

Everybody has a sell-by date, but some folks know theirs in advance. About a year ago, my husband and I had a meeting with a doctor who was new to us. Nice looking man with an open face. He saw our expectant looks and stopped mid-sentence. Looking at Lou he said, “Has no one mentioned that you have stage 4 cancer?”

No one had. We knew there was an issue. Lou has one kidney from birth, and at his yearly checkup, the kidney specialist said to talk to a cancer doctor. But he didn’t seem overly anxious.

I was grateful that finally someone was speaking truth. The hardest to hear was that Lou had, probably, about a year to live. It was as though someone had taken a very sharp knife and plunged it into my stomach.

The oncologist explained that Lou had cancer cells in his liver, but they were not those expected to be there. They were squamish cells, usually associated with other locations. That meant they had spread (metastasized) from somewhere else. But they didn’t know where they had come from.

A Rare Form of Cancer

Lou has cancer with unknown primary (CUP). It affects 2% to 5% of diagnosed cancers. The doctor’s next words tore at my gut: Because the primary source is unknown, there are no data-based, targeted treatments. In other words, for those with CUP, treatment is a guessing game.

I was grateful that finally someone was speaking truth. The hardest to hear was that Lou had, probably, about a year to live.

We had gotten the news at NYU Langone, a top-flight institution where we see our specialists. The overwhelming advice was to go to Memorial Sloan Kettering (MSK) in New York, the Gold Standard, we were told.

Given the restricted time frame, we expected MSK to build on NYU’s findings. But they had to re-do tests, to validate the results. Over the following months, I swallowed my anger and frustration, as the days filled with tests, biopsies, CT scans, MRIs, x-rays and hours spent waiting. The immunotherapy and chemotherapy had zero effect on killing any disease. I hugged Lou close as he comforted me when I couldn’t control the tears.

Lou suffered all the side effects — extreme fatigue, drug induced lung infection, steroids to deal with that, removal of huge amounts of fluid from his lungs, and, best/worst of all, the loss of over 30 pounds. Lou has never been fat. Now he is emaciated. I try not to show him how scared I am.

Not long ago, I heard a crash in the bedroom to find my 6’2″ formerly strong darling dazed on the floor.

There was the offer of one clinical trial. A hope glimmer. But it had mind-blowing side effects and wasn’t aimed at cancer with unknown primary. Lou decided to pass. I steeled myself to be strong for him.

So now we’ve enrolled in what’s called Home Hospice. It’s basically a space where there is no treatment, but you still hope for a magic bullet. Where I watch my husband become less every day.

Not long ago, I heard a crash in the bedroom to find my 6’2″ formerly strong darling dazed on the floor. Lou said he’d bent over to get his shoes and then started to fall without being able to control what was happening. The wall behind him was blood smeared. He had hit his head.

Feelings of Helplessness

Panic. Heart racing. Cloths to press on his head. An ice pack. The hospice said to do what I was doing. Asked if Lou wanted to go to the hospital. No. Didn’t know if I could get him up. But I did. The cut wasn’t deep, but I thought the bleeding would never stop. On his physician’s advice, Lou is no longer taking Eliquis, a blood thinner.

Last year I wrote an article for Next Avenue that flagged that falls can be the beginning of the end. Now it is shattering, personal knowledge.

I’ve cancelled almost everything. Since hospice, there’s minimal interaction with MSK and the long waits. We had to scrub our last session at MSK’s Center for Integrative Medicine. The acupuncture helped Lou to relax, but he was too exhausted to attempt to go.

A Lonely Road

It didn’t feel right to phone and cancel. I went to the appointment and spoke to the doctor. He counseled me to take care of myself. He asked me to keep in touch. His caring for Lou, and for us as a couple, is something I will always remember.

Lou doesn’t want to spend whatever is left of his life in a hospital, and I want to respect his wishes. My insides churn with helplessness.

A couple smiling together in Paris. Next Avenue
The couple on a trip to Paris, one of their favorite places.

My own NYU internist has scheduled a monthly video visit to check up on me, especially since I’ve lost more than 15 pounds unintentionally. And the local rabbi calls this agnostic at least once a week. Some friends have disappeared, but there are those who keep in touch. And, yes, I do have someone I can talk to. But it is a lonely road.

Over a year later, my 87-year-old husband has outlived his prognosis and is a shadow of what he was. But he is here. And I want him here.

Some people get inspired after a diagnosis. They reach for a goal or get everything in order. Lou is frustrated and bored, but he is too worn out to do much of anything. I want things however he wants them.

Mostly, he wants to sleep or read the newspaper or hug me. That’s what I cling to. That he’ll be there to cradle me in his arms me as long as possible. Sometimes we go to the sofa and lie with my head in his lap. Lou believes his job is to take care of me, and some of his distress is that he can’t anymore.

Sleep? Not so much. Exhausted. Deeply. What to do? Besides cry. Besides wish I could do more for this man who’s been my life for over 41 years. Because I can’t imagine my world without him. He’s my rock and my biggest fan, the one whose faith in me is stronger than my own. His all-embracing love is where I am home. Whatever I want to do, wherever I want to go, I want to share those experiences with Lou.

That’s the hardest part of Now. Because I’m with him in this no-man’s land, where we can only cling to each other and wait for the inevitable.

Of course, we would have tried anything, gone anywhere when we first heard Lou’s diagnosis and the medical predictions of our future. But if I’d known then what I know now, I would have encouraged Lou to make a different decision.

Regretting Endless Tests and Treatments

There are cancers that can be targeted. Cancer with unknown primary is not one of those. I hope anyone reading my words never faces what’s in front of us. But if you find yourself in this nightmare, here’s what I would say: Don’t spend whatever time you have going to doctors, submitting to endless tests and treatments, waiting in anonymous rooms filled with distracted, unhappy people. Sitting on uncomfortable chairs, being so vulnerable. Dealing with all-business staff that has all the time in the world, while your time is limited. And waiting. Waiting. Waiting.

If I had known then, what would I have done? I would have gone back to Paris with my husband, or we could have gone to the Broadway shows we missed.

If I had known then, what would I have done? I would have gone back to Paris with my husband, or we could have gone to the Broadway shows we missed. We would have reminded ourselves how lucky we were to be able to walk home from the theater. We could have taken in New York’s magisterial skyline from celebratory dining spots.

Now Lou is beyond tired. His legs give way and he falls, can’t get up. Sometimes I’m not strong enough, and we have to call for help. His MSK doctor says he’s fallen too many times and is not safe at home. Emotional overload. The doctor wants me to move him to an in-patient hospice. Lou knows not being home is a possibility. He is disconsolate.

No. I am not going to rush into anything. Moving furniture to make room for a hospital bed, even though Lou says he won’t use it. Never-ending efforts to schedule health aides. Medicare comes through with 15 – 20 hours a week. We now need 24/7. Trying not to think too far ahead.

Welcome to the third ring of hell. You may have read that because of COVID many health care workers died/changed careers/moved away. At the same time, more and more people need qualified help. Hours are spent trying to figure out what’s possible.

Recently my darling said, “What a terrible burden I’ve put on you.” I thought my heart would crack. “I don’t feel it as a burden,” I said, startled by my truth. What is breaking my heart is the fear that I won’t be able to help him, that I won’t know what the right thing is. Fortunately, the hospice physician and woman covering for him are knowledgable and compassionate.

So far, there is no pain. One blessing among the horrors. But he is suffering, and we are looking at a future of unknown — though not long — length.

Struggles of a Caregiver

As I’m writing this, Lou is visibly deteriorating. He can no longer turn himself easily in bed or rise to a sitting position without help. He can barely stand for a moment with assistance while he is moved from the bed to the wheelchair.

What is breaking my heart is the fear that I won’t be able to help him, that I won’t know what the right thing is.

I can’t imagine how people navigate this without a caring partner, but anyone taking on the caretaker role should know in advance: there is mighty little guidance. It’s learn-on-the-job. Case workers and nurses may or may not be thoughtful and compassionate, but you have to think of the questions to ask because too often no one volunteers information.

Are you willing to stay in because you don’t trust that the aide will keep your loved one safe? Or because the aide didn’t show up? Are you prepared to spend hours of your time trying to find coverage even though the agency assured you they would always be able to come through? Can you handle the blowback when you cancel what isn’t working? Can you deal with the additional cost? Are you prepared for the never-ending laundry? Can you function with catch-as-catch-can sleep, only a few hours each night?

My husband is dying. But he’s not gone yet. A few nights ago, he agreed to the hospital bed. He understood that if I don’t get some sleep, I won’t be able to be there for him. He hates the bed. Misses me at night. I miss him too.

Lou eats little, sleeps at odd hours, is restless at night. The aide has to wake me. Lou’s speech is now slurred. It’s hard to understand him. He is angry. He forgets. He wants the hospital bed and the strange people in the apartment gone. He wants me with him all the time. I am terrified.

Addendum: The Death of My Husband

In the daytime, he dozes, wakes, starts to read the newspaper, dozes, wakes, tries again to read. My plan was to write how I would put my arms around him, wanting him to know how much I love him. I was going to share how he would reach out to put his arms around me, wanting me to know how much he loves me.

On September 17th, Lou slept most of the day and night. He mumbled about wanting to go home. I held his hand, said he was home and I was with him. I used to call him my giant, and I told him that I would still choose him out of all the giants in the world. I said I would always be with him and he would be with me. He smiled, squeezed my hand and moved his lips to kiss me.

The next day, he woke and surprised me, wanting to brush his teeth, shave, shower. The aide helped him into the wheelchair and into the bathroom. Afterwards, I warmed some chicken soup. He reached for it and gulped down almost half a cup. Then he lay back to rest. Suddenly he was gasping for breath. And then he was gone.

I am numb. The aide gently repeats that Lou is not breathing. A convulsion of tears. I thought there were none left. Touching him. Taking his hand. Stroking his forehead. Kissing him. What do I do now? I am lost.

Call the hospice. They will send a nurse to sign the time of death. Call the funeral home. They will come. Then what? Vast emptiness. The rabbi calls and says I have to embrace life. Says that’s what Lou would want. Rationally I know he is right. Somehow, I will find a way. I just can’t imagine how.

This year, for our anniversary, June 27th, we had to cancel reservations at a restaurant with spectacular Manhattan views. Lou said it made no sense to go when he couldn’t eat much. He was devastated to disappoint me.

I said: “We’ll always have Paris.”

Complete Article ↪HERE↩!

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Assisted dying

— ‘I do not want to end my days as a lost soul in a nursing home’

Jule and Wayne Briese copy

One couple’s story of four years from dementia diagnosis to assisted death

By Sheila Wayman

On the morning that Wayne Briese had chosen for his medically assisted death, he was out shovelling snow in front of his house at 6am, to make sure the doctor would be able to get her car in.

It was January 6th, 2022, almost four years after he had been diagnosed with Alzheimer’s disease at the age of 73. As soon as he received that news, Wayne made it clear to his wife, Jule Briese, that when he no longer had the quality of life that was acceptable to him, he wanted to avail of Medical Assistance in Dying (Maid), which was first legislated for in their home country of Canada in 2016.

“I do not want to end my days as a lost soul in a nursing home,” he told her.

At the outset, there was some doubt in their minds about whether Maid was available to somebody with dementia. Once it was clarified it could be possible, Wayne described it as “the light at the end of the tunnel”.

“I was very supportive because I know Wayne would have honoured what I wanted,” explains Jule (78), in a Dublin city hotel on a sunny September morning. She is holidaying here when we meet, her first trip to Ireland. Aware that this country is looking at the possibility of making provision for medically assisted dying, she is keen to share her experience.

The Oireachtas Committee on Assisted Dying is due to resume its public hearings today after the summer break. At the first of the committee’s five hearings so far, on June 13th last, its chairman, Independent TD Michael Healy-Rae, outlined: “The committee may recommend that changes are made to existing policy and legislation around assisted dying, but it could also recommend that no changes be made.”

The committee was set up after a Private Members’ Bill, Dying with Dignity Bill 2020, which seeks to allow for somebody with a terminal illness to request a medically assisted death, had passed the second stage in the Oireachtas.

In 2013, Marie Fleming, who was living with advanced multiple sclerosis, lost a landmark Supreme Court challenge for the right to an assisted death without putting anyone who helped her at risk of prosecution. She had claimed the ban on assisted suicide was discriminatory in that an able-bodied person may take their own life lawfully, but she could not be lawfully helped to do the same.

Wayne was always open and ready to talk. He never hid it. He wanted to be treated as Wayne, not as Wayne who had Alzheimer’s
— Jule Briese

Jule and Wayne had been married for almost 52 years at the time of his death and had been “each other’s best friends” since meeting as teachers in Ontario. For the last four years of their marriage, they comforted each other in the carrying of their individual burdens: he sensing the disease was erasing the blackboard of his life, and she the witness to its unstoppable advance. The fact that Wayne never lost his insight into what was happening “was both a blessing and a curse”, she says. He could empathise that it was hard for her too.

Jule Briese: Aware that this country is looking at the possibility of making provision for medically assisted dying, she is keen to share her experience.

Jule’s way of working through anticipatory grief of the loss of her husband was to write. A memoir booklet, entitled In the Hot Chocolate and Decadent Cake Society (2018), captured some of her early thoughts and those first telltale signs of confusion. In October 2017, as Wayne looked for his pyjamas in the wrong cupboard instead of going to the shelf where they were always stored, “fear scrapes its finger along hollows, unsettling my insides”, she wrote. She knew they were reaching the stage where “no longer content to be ignored, this elephant trumpets for more attention”.

When the anticipated diagnosis of Alzheimer’s was confirmed three months later, at the Brain Health Centre in Vancouver, it was “still surreal”, she tells me. They initially wondered, as it was a research centre, could they be involved with some research. But there wasn’t anything for Alzheimer’s and they felt “cast-off and adrift”.

How they navigated the next four years, from diagnosis to his date with death, is a story of personal choice, stresses Jule. But she believes there’s healing power in telling stories because it gives permission to other people to share theirs, with every listener, or reader, taking out of it what is for them and passing it on. She also wants to honour Wayne’s courage and “to give voice to what he was passionate about, and that was the right of the individual to an end-of-life choice”.

The couple, she says, did not choose to avail of Alzheimer’s medications for what is an incurable and progressive condition. “Diet, exercise and making your life meaningful… that is what was important to us.”

What was also at the back of their minds was that some of the drugs mask the progression.

“You get to a point where they don’t work any more – you were here, and there you are now,” she says, demonstrating a gulf that they had no wish to cover in a sudden leap. It is not that they were anti-medication, and Wayne did take a pill for anxiety from the second year onwards, but rather, it was a matter of weighing up the benefits and side effects.

Wayne lodged documents with a lawyer straight after his diagnosis, outlining his desire for Maid and his definition of quality of life. Jule knew it would be her job to look out for the red flags that would signal stages of decline. Meanwhile, they got on with life, in which the outdoors had always played a large part. “We hiked, we camped. We weren’t overly social people; we had a small circle of friends.”

With Wayne’s permission, Jule recorded the two of them talking about issues. She devised questionnaires relevant to how he was coping with daily life, and they could use his responses to give a fuller answer to the “How are you?” opening gambit at medical check-ups. Extracts from these recordings, along with selected email exchanges with his doctor and notes from Jule’s journaling, were published earlier this year in a book, Shared Conversations – Glimpses into Alzheimer’s.

The book Shared Conversations – Glimpses into Alzheimer’s was published earlier this year.

“Wayne was always open and ready to talk,” she says. “He never hid it. He wanted to be treated as Wayne, not as Wayne who had Alzheimer’s.”

In the main, friends were really supportive, but “there are those who don’t know how to cope, and they leave”.

Once the couple had established that assisted dying was a possibility for somebody with dementia, they contacted Dr Tanja Daws, who Jule had heard spoken warmly of as the doctor at the centre of somebody else’s experience of Maid. At the first meeting with the couple, Dr Daws told them it was going to be a long journey, “we are going to be together for a while”.

“And we were,” says Jule. They met her every three months after that, over nearly four years. A second, independent doctor must be involved in the assessment for Maid, so Daws referred Wayne to a geriatric psychiatrist, Dr Pawel Juralowicz, for parallel appointments. Both of them would have the chance to get to know Wayne in the lead-up to him making a formal Maid application.

A big concern for Wayne was that a time might come when he would no longer be deemed capable of giving consent, and then his choice of a medically assisted death could no longer be enabled. But a Canadian legislative amendment, Bill C-7, in March 2021, removed that worry. It allowed, in certain circumstances, for assisted dying to go ahead for an eligible patient who had agreed in advance a waiver of final consent with their doctor.

“Sometimes it’s called Audrey’s Bill,” says Jule in reference to a high-profile campaigner, Audrey Parker, who had stage-four breast cancer and had been assessed and approved for assisted dying. She had hoped to see out one more Christmas, but, afraid that pain medication would remove her ability to give final consent, she went early, choosing November 1st, 2019, for her death.

‘When I set my date for Maid I don’t want anyone to try to change my mind’. That stayed with me. It’s about Wayne
— Jule Briese

By early 2021, an escalation of Wayne’s dementia was unsettling both him and Jule. By July, he was struggling to know how the people around him fitted into his life. In a conversation recorded on July 22nd, 2021, Jule said to him: “We’ve talked about red flags and you said something like: ‘When I get to the point of not knowing who my wife is and when I get to really being in a confused state, then it’s time to think about Maid.’ Would you say that you are actually beginning to experience those things that you did not want to have to happen to you?”

“I think that is a correct observation by you,” he replies. “Is it all right to say that?”

They agreed that episodes of confusion were becoming more prolonged and that they were nearing “10 minutes to midnight”. This is a term Dr Daws used for the time at which Wayne would need to apply for a Maid assessment, to verify that he met the criteria and was fit to sign a waiver for it to go ahead without his last-minute consent, if incapable at that point.

Everybody has their own definition of quality of life, says Jule. “You had to deteriorate to a certain point, where your quality of life as you defined it was in jeopardy, and it was at that point you could set your date for Maid.”

Choosing to be formally assessed is one thing, but how do you know when to set the date? It was a question Wayne asked both of his assessors in December 2021. Jule recalls how Dr Juralowicz suggested to him that the consciousness knows when the time is right, while Dr Daws replied: “Wayne, if life is a stage, how do you want to take your final bow?”

“Within a week, Wayne said, ‘I want to have Maid after Christmas’ – that was on December 18th. I said ‘before new year’s?’ and he said ‘No, no, after new year’s.”

He set the date for January 6th, 2022, at 10am.

“Two months before he set the date, he’s in the shower and he called me, ‘Come quick’. There was his smiling face, ‘When I set my date for Maid I don’t want anyone to try to change my mind’. That stayed with me. It’s about Wayne, it’s not about me, and I think that’s really important.”

With the date set, the challenge was how would they spend the finite days left? They had envisaged they would enjoy a quiet getaway together on the west coast before Wayne said his goodbyes to relatives and friends. But, as it turned out, he had already reached a stage where he didn’t want to leave their home at Qualicum Beach on Vancouver Island.

Jule Briese: ‘He passed with love and we opened the windows so his soul could go. Yeah, it was beautiful, it was peaceful, it was the way he wanted to go.’

So they stayed put, and Wayne made phone calls to people important in his life. The couple invited close friends over to dinner and a special friend played a clarinet concert for him.

On a lighter note, Jule recalls how a niece, Kashmir, who had spent time with them while attending university nearby, had bought a gingerbread train kit as a fun gift for Wayne that Christmas before she knew he had set a date for Maid. “She said to me, I don’t think somebody that is dying is going to want to do this. I said ‘I think you’re right and we will give it to grandchildren of a friend’.”

However, when there was a power cut one afternoon, they decided to take it out and assemble it between the three of them.

He did not want me to be the worn-out caregiver. He said to me: ‘My life is finished, my quality of life is gone, you need to live your life’
— Jule Briese

Kashmir was disgusted to discover the kit did not include icing. “She said, ‘Who on earth would do this for kids and not have icing?’ I said I have honey. It was a mess, but it was like we were all kids. It was such a priceless memory.”

Although describing themselves as “more spiritual than religious”, the couple invited a local Anglican priest to be with them on the day Wayne had chosen to die. He came at 9am and, in the course of conversation around their pellet stove, Wayne spoke of how he had been blessed in life and had no regrets.

“Then he turned around to me and said beautiful things and to Kashmir.” When Dr Daws and a nurse arrived, the couple moved into the room that overlooked the garden though double glass sliding doors and the priest gave each of them an individual blessing for their diverging paths.

In a last-minute flash of Wayne’s characteristic humour, he looked at the nurse and said: “Where have you been for the last 40 years? Finally, somebody that can put in an IV.” Then he told them: “I’m ready.”

“I held his hands and Kashmir held his feet,” says Jule. “It’s like he was on his journey and preparing to leave, we had said our goodbyes. I was there to witness his leaving.” Opera singers performing some of his favourite John Denver songs, from the album Great Voices, were playing in the background.

“He passed with love and we opened the windows so his soul could go. Yeah, it was beautiful, it was peaceful, it was the way he wanted to go.” When it was over, Jule asked to spend some time alone with him and played a song she had written for him called My Best Friend.

As medically assisted dying goes, she feels she and Wayne had the “gold star” experience. Training she had done in her 50s for conflict resolution, mediation and negotiation had equipped her to communicate with Wayne throughout the lead-up.

“If I had not taken those [courses], we would never had had those conversations. It taught me to be curious.” Out of their discussions, she has created a one-act play, Ten Minutes to Midnight. She believes it will be an educational tool, showing how to communicate with somebody with dementia, as well as giving insight to doctors.

With a number of countries, including Ireland, currently looking at legislating for assisted dying, Jule hopes that what she has to share might help in some way towards them doing it better. “You look and learn from what other countries have done.”

Jule is grateful for what Wayne’s choice meant for her. “He did not want me to be the worn-out caregiver. He said to me: ‘My life is finished, my quality of life is gone, you need to live your life’. There’s the compassion. He gave me the gift of his life,” she says, as her composure throughout the interview falters for the first time. “Therefore I have to use that.”

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What does it mean to offer compassionate care for people facing the end of life?

— NPR’s A Martinez talks to Ben Marcantonio of the National Hospice and Palliative Care Organization, about in hospice care, how the focus is not about preparing for death, but for living a full life.

A MARTÍNEZ, HOST:

What does it mean to offer compassionate care for people facing the end of life? And how can someone face the final moments in peace, comfort and grace? Well, many people have asked questions just like that since former President Jimmy Carter opted for hospice care more than six months ago. Ben Marcantonio is interim CEO at the National Hospice and Palliative Care Organization.

BEN MARCANTONIO: His son recently in an interview shared glimpses into the way in which President Carter and First Lady Rosalynn Carter have been sharing moments together, opportunities to be with and pray with family and friends, to enjoy his favorite ice cream, peanut butter, and that he’s been able to live and not be returning to hospital visits or to be going to all kinds of medical appointments outside of his home to seek cure, but rather to really focus on his quality of life and how he wants to spend that time until his death.

MARTÍNEZ: In an American culture that often shuns even the thought of death and dying, Marcantonio says hospice is also about living.

MARCANTONIO: Choosing hospice is not necessarily an end to life or giving up on hope. It’s just redefining hope and helping navigate a stage of life that is unfamiliar to us because we’ve never walked that course.

MARTÍNEZ: Providers say that’s about bringing respect and dignity to final moments. For example, Keisha Mason – she’s the executive director of Heart’n Soul Hospice in Nashville. It’s a Black-owned hospice dedicated to caring for people in underserved communities.

KEISHA MASON: We have a patient on service right now who has dreads almost to his knees, probably about the longest dreadlocks I’ve seen. So, like, once a month I go over, I wash his hair, and I retwist his hair. And his mother almost cries every time that I go do that for him. And she’s like, why do you do this? My kids have dreads, and I know what that is. It takes some work to get it done, but it’s what I need to do for him to give him back his quality of life.

MARTÍNEZ: It’s also about bringing what Mason says is her authentic self to extraordinarily challenging work.

MASON: Most of us who are in the hospice will tell you that we didn’t choose to go into hospice care. Hospice plucked us out from where we were and said, no, this is where you need to be.

MARTÍNEZ: Michelle Green is from Lufkin, Texas. That is where her mother, Barbara Carroll (ph), is in hospice care.

MICHELLE GREEN: This experience is honestly just full of blessings and heartache. I live in the same town as my mother. She is 89. And it is such an emotional and physical drainage to just watch a loved one declining. So for us, being able to turn to that caring professional – it’s such a relief just to know that we’re not alone.

MARTÍNEZ: That first day – what was that first day like?

GREEN: It was very emotional. You know, it’s tears of joy. It’s tears of sadness. We just had to trust and know that it was the right thing to do.

MARTÍNEZ: The hospice they turned to is Hospice in the Pines, where Demetress Harrell is the CEO.

DEMETRESS HARRELL: I think one of the biggest concerns that I hear from most families is how long will they have on hospice? And so giving them the comfort in knowing that in no way, form or fashion will this decision hamper or hasten their life expectancy gives them great comfort in knowing that the compassionate care will be to do everything we can to enhance the quality of life.

MARTÍNEZ: How often do you sense or hear guilt from a family?

HARRELL: So the guilt comes from did I do it soon enough, or did I do it too soon? I have cards even in front of me now that indicate it was the best decision we could have made to ensure that mother or father or sister or brother or even child received comfort and that the presence of you all being there, making decisions that I could not and handling the heavy lifting made a significant difference. And you all are angels in our lives, and you will be forever. And so I hear most of the time I wish we would have done it sooner.

MARTÍNEZ: Demetress, when we hear that someone enters hospice, it tends to be followed by a sense of sadness. Like, that’s it. OK. This is the end of their life. And you made it a point to say that this isn’t just necessarily about someone’s end of life, but it’s about their life and living.

HARRELL: When we get a terminal diagnosis, it is hard for us to wrap our hands around it. When we come on hospice, we realize that it’s considered a good death because the person is not laying there suffering. And so you can only imagine what life would look like and death would look like without hospice holding your hand.

MARTÍNEZ: Michelle, what’s your mother Barbara’s experience been like? When you’ve talked to her, what has she said about it?

GREEN: You know, it’s just finally giving them the help and letting them realize they don’t have to do it alone. Mom looks forward. Whether it is her nurse that is coming or a CNA that’s coming, she looks forward to those visits and is honestly developing a friendship with the individuals.

MARTÍNEZ: So, Michelle, what would you say to people listening that are thinking about this decision, either family or the person that might be going into hospice care? What would you say to them about this whole experience?

GREEN: I would encourage them to take that plunge, to take the guilt out of their decision and realize that they are doing what is best for their loved one. They are providing them with professional and caring care. And like Demetress said, let the daughters be a daughter. Let the sons be a son. Let the family enjoy being with their parent or whoever needs care and turn that professional care over to people who are trained in caring and let you be the loving family or friend to just support them.

MARTÍNEZ: Michelle Green is in Lufkin, Texas. Her mother, Barbara, is in hospice care. And Demetress Harrell – she’s CEO of Hospice in the Pines in Lufkin. Michelle and Demetress, thank you very much.

GREEN: Thank you so much.

HARRELL: Thank you so much. It’s been an honor.

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