Category: Elders

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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.”

Complete Article ↪HERE↩!

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Solo Aging

— Who Will Take Care of Me When I’m Dying?

By

Who will take care of me when I’m old? is the unsettling question that is on the minds of millions of people who are and will be aging alone — the never-married, separated, widowed, and divorced population. Rarely do solo agers, or anyone else for that matter, take this question any further. And they should.

At its core, clients will look to you, the professional, to engage them in open and honest conversations about one of their deepest fears about aging –- dying alone.

Bring Up the Past

As long as I can remember, people are divided into distinct mindsets about preparing for death. Some understand the immediacy of planning for the day they hope will never come, others conclude that having their legal and financial affairs in order is enough of a plan.

Family caregiving plays a significant role in the willingness to plan for death. The experience of caring for our elders, and helping them walk through death’s door, opens our eyes to a variety of end-of-life experiences.

Asking clients about their negative eldercare experiences may serve as an opportunity for you to open up the dialogue about planning for a good death. Former family caregivers are often determined never to let misfortunes happen to them.

Where You Die Matters

When asked about long-term care planning, many people express the desire to remain in their own home for as long as possible. This concept is referred to as “age-in-place”.

In terms of the quality of this long-term care plan, aging-in-place is a doable solution for solo home dwellers until they find out the hard way that it isn’t. Advertisements enticing residents to install grab bars and motorized stair chairs are not helping matters with their simplistic messaging.

Solo agers may not have the wherewithal to give the age-in-place concept the forethought and planning it requires. For this reason, clients may look to you as a one-stop shop for obtaining trusted referrals. Consider the following resources:

  • Aging Life Care Professional: Care managers assist in creating long-term care plans and finding eldercare services. Website: www.aginglifecare.org.
  • Independent Board-Certified Patient Advocate: Helps with medical transactions, early discharge, medical interpretations, medical billing, insurance, and complaints about care. This professional acts as a liaison between patients and the health-care team. Website: www.npaf.org.
  • Medicare Advisor: Helps understand Medicare and Medicaid, including paying for hospice and palliative care. They also organize medical bills and negotiate coverage for medical services before and after receiving care. Type “Medicare consultant” in the Internet search engine.
  • Veteran’s Benefits Consultant: Offers assistance in qualifying for benefits and helps complete digital forms to submit to the Veteran’s benefits office. Type “veteran’s benefits advisor” in the Internet search engine.

 Early-Onset Alzheimer’s: The Value of Knowing

Dementia is designated “early onset” when it affects people of working age, usually between 30 and 65 years old. If your client is diagnosed with early-onset dementia, there are specific resources to lead them to in order to die a good death:

  • National Council of Certified Dementia Practitioners: nccdp.org
  • Alzheimer’s Association: alz.org
  • The Alzheimer’s Society: alzheimers.org.uk
  • To Whom I May Concern®: http://towhomimayconcern.org
  • Memory Cafes – are gathering places that offer people a place to laugh and relax. Do an Internet keyword search: Memory café, Alzheimer’s café.

No One Dies Alone

No one is born into this world alone, and in the best of circumstances, no one dies alone. With people living longer than ever before, however, outliving family and friends is a modern-day reality.

Solo agers have the opportunity now to establish relationships with professionals who specialize in death and dying. A comprehensive list of specialists is offered in my book, Who Will Take Care of Me When I’m Old?

One resource in particular is worth a special mention — death midwife, also known as death doula and end-of-life guide. These professionals work in concert with doctors, nurses, and other health-care professionals, but do not replace them. They perform specific tasks — sort medical bills, legal paperwork, manage advance directives — as well as provide spiritual and emotional support at the end of life. They can step in early in the process, helping both the healthy and the terminally ill. Services and fees vary widely. To locate resources, type “death midwife” into your Internet search engine or contact the International End of Life Doula Association (www.inelda.org).

In conclusion, the world is in a dramatically different place than it was a decade ago. And yet, I am hopeful that you will meet the challenges that lie ahead. Partnerships with other professionals will help get you there.

Not only does collaborating with other advisors enhance your business credibility, joining forces is what will ultimately make a real difference in the lives of solo agers everywhere.

(Joy Loverde is a best-selling author and popular public speaker, specializing in keynotes and workshops for family members and professionals in the eldercare industry.)

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Study Finds Gap Between What Rural Residents Want for End-of-Life Care and What They Receive

— Lack of conversations among the family members, and a more difficult access to healthcare are among the reasons responsible for the discrepancy.

By Liz Carey

When it comes to end-of-life wishes, a new study has found that while most people have end-of-life wishes, only a little over a third of them actually get them fulfilled. That is even more true with rural residents, researchers said.

Lula Reese said she didn’t have to ask her mother what she wanted as she neared the end of her life – she just knew.

“She told us she didn’t want to live with any of her children,” Reese said of her mother, Lula Simms. “She didn’t want to be a burden on any of us. We never talked about what she wanted. We just knew.”

Lula Simms lived in rural Bastrop, Texas , population 10,434, all her life and turned 100 in November, 2022. For the last two years of her life, her eight children cared for her in her own home with the help of hospice.

“She was in hospice for two years,” Reese said. “One day, she was different – she had stopped eating and she wasn’t the same. We took her to the hospital, and they told us she was transitioning.”

Simms died in February 2023, just a few days after her children rushed her to the hospital. For Reese, making sure that her mother’s wishes regarding the end of her life was never something that was written down. It was just something the family knew – her mother wanted to stay in her own home as long as he could. With the help of hospice, her family was able to make sure those wishes were met.

A new study from St. David’s Foundation in Texas has found that when it comes to end-of-life care, most Texans want to die at home (76%), and to not be a burden to their family (77%). But only one in three people surveyed said their loved one’s wishes were honored. Of those who are least likely to have their end-of-life wishes followed are rural residents, the study found.

Only 37% of the survey respondents said their loved ones died at home. Close to half of them (47%) said their loved one faced challenges related to their care – from problems with insurance coverage to facing cultural or language barriers.

Andrew Levack, senior program director with St. David’s Foundation, said there are a number of reasons why ensuring a rural loved one’s wishes are met may be difficult. Key among them is that conversations about the end of life just don’t take place.

“I think a big part of it is that those conversations and that planning around how to make (end-of-life wishes) happen don’t necessarily take place,” he said in an interview with the Daily Yonder. “One of the interesting things the study found was how few conversations respondents had with their doctors around plans for end of life. I think people have an idea of what they would like, but it takes some active planning and advocacy to make that happen. In the absence of that, I think people don’t realize what their ideal scenario would be.”

Dr. Kate Tindell, medical director for Austin Palliative Care and Hospice, said most of the hospice referrals her program has come from hospitalizations. That presents a problem for rural residents who are further away from hospitals and more isolated, she said.

“The rural community I think tends to already have limited exposure to health care,” she said in an interview with the Daily Yonder. “I think (the Covid-19 pandemic) really compounded that for them. Rural communities were suffering from the closure of healthcare access. The strain on health care from Covid makes it feel like we’re seeing them have less and less access.”

Lack of access can lead to a less intimate relationship between patient and doctor who could discuss hospice with an elderly patient.

“People have really disjointed health care now,” she said. “We’ve sort of lost that sense that there is a captain of the medical ship who is aware of all the moving parts and is giving the patient that guidance. I think that really causes people to not have the kind of relationship that would allow them to have that kind of conversation (about end-of-life wishes) the way they would if they had seen the same provider every single time for 10 years.”

Sometimes, it falls to non-profit organizations to get information about making end-of-life decisions to older rural residents. Sumai Lokumbe, is one of Bastrop’s OWLs – or Old Wise Leaders. She works with the aging population in her area to make sure they get the care they need. Many people in her community are unaware of what hospice and palliative service is or have a misunderstanding about what end-of-life care entails.

“I explain to people exactly what hospice does and what it is,” she said in an interview with the Daily Yonder. “They come in to make sure you’re not in pain and make you comfortable and take some of the stress off the family members, plain and simple.”

In some instances, cultural differences create challenges to overcome. Many African Americans in her area face cultural beliefs that prevent them from having anyone but family care for loved ones as they age. Other African American community members may distrust a system that has previously not cared for them.

“In the African American community especially, there is a belief that you stay with your family,” she said. “But there’s also a lot of distrust of the system. They don’t have a lot of trust in things put in place for them by people who don’t look like them.”

For Lula Reese, hospice was a way for her family to care for her mother as she transitioned through the end of her life.

“We had heard of hospice, but we used to always think that hospice care meant that she was going to pass away in the next five or six days,” Lula Creek said. “But we learned that wasn’t the case… Hospice and helped us take care of her, like giving her baths and bringing her supplies when she ran out.”

Even without those final wishes in writing, the family was able to keep her in her home as long as possible, she said. Hospice helped them to care for their mother, as well as alleviate financial burdens they know she would have feared placing on them.

“We didn’t talk to her about hospice care, and you know, we didn’t talk to her about what she wanted to do in her last days, ” she said. “We didn’t find out about it until after we had her service. She had already written that her desire was just to live long enough to see her children be grown. Her youngest child is in their fifties, so she had everything she wished for. We never asked her if she wanted to go into a nursing home. We just knew that was not her desire.”

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My three-point turn toward personalizing good death in old age

By Marcel G.M. Olde Rikkert

It was New Year’s Eve, and my wife and I were visiting my father in his long-term care apartment. He had been cautiously wandering around, waiting for a visit, when we arrived, something he’d been doing since my mom had died a year ago. He looked frail. The “surprise question” occurred to me: Would I be surprised if he passed away in the next year?

No. I wouldn’t.

After we’d spent some time together, I asked his wishes for the coming year.

“I don’t know,” he replied. “I’m 101 years old. I was married nearly 70 years and have finished my life. Marcel, I am very much afraid of dying. Will you ensure that I don’t suffer and that dying won’t take too long?”

I promised him I would try.

The second week of January, I received a call that my father had fallen and was in pain. He had no fracture, but he insisted he did not want to get up anymore. I drove the 120 km to his home, thinking about all of the possible scenarios. My first thought was to get him on his feet again, with enough analgesics to overcome his fear of falling. As a geriatricianson, I had always tried to keep my parents active and felt proud that they had enjoyed so many years together this way.

But would such encouragement fit the situation my dad was in now? He’d asked me to make sure dying didn’t take too long. Was it already time to consider death by palliative sedation? I felt uncertain. To qualify, he needed a symptom that could not otherwise be helped, and death had to be expected within two weeks.

When I arrived at his bedside, he repeated, “I don’t want to get up anymore,” and again, he asked me to help alleviate his fear of dying. I had to honour his heartbreaking request for a peaceful death. With a leaden soul, I went to the doctor on call — luckily his own physician — and asked for his assistance in ensuring a peaceful death. We discussed all options, acknowledging my father’s increasing frailty, despair and anxiety, and we agreed to start acute palliative sedation with midazolam, adding morphine according to the Dutch national protocol. I watched as the doctor prepared the equipment, feeling reassured by his calm professional acts.

My father could not understand the plan himself, but after an hour or so he woke for a few seconds and, with a frail smile, said goodbye to my sisters and me. We made a schedule for staying with him and I took the first turn. I sat next to him for two hours, and just after his second dose of morphine, he stopped breathing and passed peacefully away, just as he had wished. Sadness and relief turned to warm gratitude in my heart. Life had given us a sensitive and wise physician who enabled us to overcome what my dad and I had feared most.

***

In December of the same year, my 86-year-old father-in-law asked me to come to Antwerp and talk to him about the options for assisted dying. He had metastatic prostate cancer and had not recovered over six weeks of hospital care. He was bedridden with a toe infection and painful pressure sores. My reflex, again, was to involve geriatricians and try to get him on his feet. However, my father-in-law, an engineer by profession, had decided it was time to turn off his engine after losing hope for sufficient recovery. My wife and I explained to him what medical assistance in dying and palliative sedation could look like, as both are allowed under certain conditions in Belgium.

Without hesitation, he chose medical assistance in dying. He was very satisfied with his life, having experienced war, liberation, marriage, births, retirement and nice family holidays. In line with his story of life, he did not want to deteriorate further and end his life in pain and misery. We kept silent while he wrote his last will, then thanked us for everything and suggested we should now watch the Belgium versus Morocco World Cup soccer match.

When the game ended, saying goodbye was hard. We looked into his eyes, still bright, and shook his hands, still strong. We knew it was the last time. But his calm smile wordlessly assured me it was time to turn off my own geriatrician’s inclination to pursue mobility and functional improvement. Death was made possible within a week, and after ensuring that all requirements were met and speaking to each family member, his oncologist carried out the procedure carefully in the presence of his children.

***

Just two weeks later, our Spanish water dog, Ticho, made me reflect again on what’s needed most at the end of a long life. For 16 years, Ticho had been my much-loved companion and daily running mate. I had begun to dream he might become the world’s oldest water dog. However, his sad eyes now showed me that his life’s end was close, also evidenced by having nearly all possible geriatric syndromes: slow gait, repeated falls, sarcopenia, cataract, dementia, intermittent incontinence and heart failure.

Still, he came with me on short walks until, one day, he became short of breath, started whimpering and did not want me to leave him alone. Patting calmed him a bit, but I realized we needed to help him die peacefully instead of trying to mobilize him again. Though not comparable to the last days of my dad and father-in-law, there were echoes.

Our three adult kids rightly arranged a family meeting, as Ticho was their sweet teddy bear. We agreed to consult a veterinarian and ask for help with a good farewell. Next morning, the vet agreed with assisting dying. She said Ticho was the oldest dog she had seen so far, and she reassured us that it was the best decision we could make. Again, I felt very thankful for this professional and compassionate help. Ticho died peacefully after sleep induction and, together, my son and I buried him in our garden.

***

Strangely, although death in old age is as natural as birth is for babies, pediatricians seem much more involved in deliveries than geriatricians are in dying. These three encounters with death in my life made me feel I had fallen short so far as a doctor, having undervalued assisting dying at old age. How to guide people to a better end of life was largely left out of my training as a geriatrician. Like pediatricians, geriatricians prefer to embrace life. In geriatric practice and research, we tend to reach for the holy grail of recovery by improving functional performance and autonomy to enhance well-being for frail older people, rather than focusing on facilitating their well-being over their last days. In this tradition, I practised hospital-based comprehensive geriatric assessment and integrated care management, as this had proven effective in giving older people a better chance of discharge to their own homes.

In my research, I had steered a straight line toward longevity and improving autonomy, in accordance with the dominant culture in society and medicine. I had excluded older people with short life expectancies from our intervention trials and did not adapt outcomes to this stage of life. Even for our recently updated Dutch handbook on geriatrics, we did not describe death or dying in any detail. I served many older people in their last days and hours, but did so with limited experience, few professional guidelines and little legal leeway.

Now, having been helped so compassionately with the deaths of three beings close to me, I realize how rewarding it can be to switch clinical gears from recovery-directed management to dying well, and to do so just in time. Older people can show and tell us when they arrive at this turning point and are ready for ending life. I hope other physicians will realize, as I have, how important it is to allow death into a conversation, even a care plan, and to be adequately trained to do so. Perhaps we also need our own turning points as physicians to get ready for the delicate responsibility of compassionate and professional assistance in personalizing good death in old age.

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Terminal illness

— Navigating the struggles of acceptance

By Linda Thomas, RN

Reality knocked me for a loop one evening when my father-in-law called from his home in another state and asked for help. This kind of request was very uncharacteristic for him. We responded immediately and drove to his home. After much conversation and many questions from both sides, we eventually came to the hard truth. His cancer had progressed and, to my mind, was most likely terminal. I dug in and started contacting his doctors, trying to sort out his health issues and prognosis. This took most of a day. I came to realize he was seeing nine physicians! He was in a desperate state of denial. The oncologist repeated that he had been very open and clear with my father-in-law about the cancer and its spread.

My father-in-law had been readmitted to the hospital with a very determined but misguided surgeon. My father-in-law thought the surgery proposed by the surgeon would be a cure. It wouldn’t be, and I had the unenviable task of discussing end-of-life matters with the patient, something the surgeon should have been upfront about.

Hospice came to the hospital to discuss the care they could offer him at his home. He elected to enter into hospice, and we took him home. At this point, he was feeling fairly well, and he had a glorious two weeks with friends and family coming for visits from many miles away. Meanwhile, I quickly discovered I was in unfamiliar territory when it came to his care. It was increasingly difficult for me to care for someone I loved and had a close familial bond with. The amounts of medication he was allowed, the hard decisions I had to make… all were uncomfortably entwined with the closeness of being family. He asked for teaching regarding his health and prognosis, and we spent hours discussing end-of-life matters and the decisions to be made. Even though family was in touch, they were in their stages of denial. I became the liaison for the family’s questions, as well.

Uncharacteristically for me, I was struck with uncertainty, processing my grief while maintaining my professional duties. I relied heavily on the hospice nurses as they made their daily visits. The type of care I gave him, the large doses of medications that kept him comfortable… all were different when compared to my decades of working to save lives and titrating medications for patients who would, with the care given, most likely live to go home and resume their lives. I found myself relying on the hospice nurse, asking questions like, “Are you sure it’s ok to give him that large a dose of painkillers?” She worked with me, explaining how different this type of nursing was compared to the care given to save the lives of my usual hospitalized post-surgical, cardiac, neuro, psyche, burn, chronic respiratory, and emergency patients.

There were different, more intense emotions involved in caring for this terminally ill, beloved family member. I second-guessed myself in areas where I normally was quite confident. The advice that most helped guide me through the nights of caring for him was given to me by the hospice nurse. She repeated to me several times, “This is different from the nursing you are used to. You medicate this patient for his comfort… whatever it takes. You cannot overdose him. I repeat, you cannot overdose him.” So I learned a new skill. I learned to titrate medication for his comfort, to give him what he needed, without second-guessing myself. I kept him comfortable but functional.

And one night, he collapsed as he left the bathroom. He had no perceptible heartbeat. He had no perceptible breathing. After 15 minutes, he sat up and started talking! It blew my mind. Once he was settled back in bed, I teased him about him having left us to visit his favorite brother and his much-loved mother, both deceased. He suddenly looked at me with complete seriousness and said, “How did you know where I was?” He was thoughtful for the next few hours, then quietly said, “I’m ready. I’m ready to go, and I’m not afraid. I’ve done everything I needed to.” Three days later, he left us. That time there was no resurrection.

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Planning to die at home?

— Here are 5 things to consider first.

Many of us say that if we have to die, we’d like to die comfortably in our home. Luckily, hospice—a Medicare-covered model of gentle, holistic end-of-life care—is ready to help with that goal.

Maybe.

by Laura Kelly

At age 78, my divorced father was diagnosed with Stage 4 colon cancer. He later admitted that he’d skipped getting any colonoscopies. He was a savvy healthcare researcher and, via drug trials, controlled the spread of his cancer for four long years. Then came the day his doctor said, “There are no more treatments left, Larry. Call your kids and sign up for hospice. Today.”

If you’re hazy about what hospice is, as my family was, check out Medicare’s hospice page that details the conditions that qualify you for hospice care and what costs Medicare will cover. You might also check out a 2023 New York Times article that sheds light on how hospice functions today. The industry has traveled far from its grassroots, volunteer origins of 40 years ago.

By the time I was flying from New York to Michigan to “help out,” my busy brother David had made the executive decision to move my father from his cluttered condo to David’s larger family home across town. My brother’s wife, 9-year-old daughter and three large dogs were no doubt a bit flummoxed when David deposited my hospice-unready father into the ground-floor master bedroom. But my father and everyone else were united in wanting the proverbial “good death” in the comfort of a home, even if it wasn’t his.

What happened during that home hospice experience surprised me. After it was over, I compared notes with friends. It seems that what my family went through might not be typical. Still, it could be a portent of what’s to come as the baby boomer bulge meets the realities of understaffed hospice care. Here are five takeaways if you’re ever considering home hospice for a loved one—or yourself.

1. Research hospice options before you need them

As my father and family found out, the very end is much too late to think about hospice—both for taking advantage of hospice’s full psychosocial benefits and for finding out what you’re getting into.

The hospice provider, which had been suggested to my father by his doctor’s office, turned out to be severely overstretched. We had only four short visits from a hospice nurse—a different person each time—during the 11 fraught days of my father’s end-of-life passage. It was also impossible to get the hospice doctor on the phone to answer our ongoing questions. Even so, we could never find the time to research and switch to another organization.

Since events can overtake you at the end of life, spend an hour today learning which hospice providers operate in your area. AARP keeps an excellent updated page with facts about hospice, including questions to ask when you interview organizations. Your future self will thank you.

2. Know what equipment and services to ask for

Beyond the electric hospital bed, rolling bedside table and plastic commode that the hospice group delivered, my brother’s home was not equipped for a dying person. Side note: At the intake meeting where we met with hospice nurse No. 1 and a social worker, we all agreed that the bed was much too short for my 6’4″ father. He requested a replacement, but one never arrived. We should have kept asking.

We quickly found ourselves making daily runs to a nearby Target for more towels, more large and small pillows for propping up, more pajamas, cooling patches, ice packs, a small table fan that my father could angle, sheets, blankets, sippy cups and dry-mouth swabs, plus an intercom because my father’s voice weakened too much to call for us in another room. My credit card got a workout.

3. Be prepared to hire help

As much as we tried to make my father comfortable, it seemed impossible. He was plagued by restlessness and couldn’t sleep or be convinced to stay in bed. Someone had to be near him around the clock to prevent a fall in his weakened state.

After six sleepless nights, we called the hospice phone line yet again with questions about the situation, and a nurse on the line finally filled us in on “terminal agitation,” a not-uncommon occurrence at end of life for cancer patients, even though no one in our family had heard of it. She told us that this kind of metabolic restlessness was worse than pain because it could not be soothed by painkillers. “Call us again if you need to,” she wrapped up.

By then, we realized that our home hospice team was mostly voices on the phone, not the on-site caretakers we’d expected. A concerned long-distance relative emailed me: “Get yourself some nighttime help so you can sleep.”

I had no idea how to find good health aides at short notice, but it turned out that “good” wasn’t the issue. We just needed someone to sit near my sleepless father, so we caretakers could get some rest. I also needed time to coordinate events outside of hospice, such as lining up a funeral home to call when my father died. In the end, I pretty much handed over my credit card to three different aide services to help us patch together 24/7 coverage until the end.

Will you need expensive additional aides for home hospice? Maybe, so be prepared by getting the names of aide services and interviewing them at the beginning of the hospice process, so they’re just a phone call away if needed.

4. Someone needs to be in charge

Continuity of care was a big problem for us and my father. There was a revolving stream of new hospice personnel and eight different aides, along with a churn of visits from nearby relatives and phone calls from folks farther afield. Meanwhile, every day brought changes and challenges as the end of life approached.

It took me far too long to realize that neither my father nor the home hospice team were running the show; I was. In unfortunate timing, during these hospice days, my brother had been pulled away to manage an ongoing crisis at his company. Still, every night, David remained on call to help me or an aide. He was the only one who could support my tall father as he restlessly moved from bed to nearby chair to commode.

Needless to say, my brother was exhausted. After another of these nights, I emailed my two sisters what came to be known as “the bossy note,” telling them exactly what was needed from them beyond the occasional visits bearing baked goods. It was all-hands-on-deck time.

I suggest that upon hospice enrollment or before, everyone should agree on a point person. This coordinator would have the overview of the home hospice situation, be given the latitude to set the ground rules and make decisions, and be allowed to delegate whatever to whomever, as needed.

5. Hospice at home may mean a nonprofessional will be in charge of medications

One of the hallmarks of hospice is the comfort care provided. On the first day, as I followed the intake hospice nurse on her way out the door with my list of anxious questions, she stopped me by handing over what she called a “comfort box.”

I pried open the white cardboard box and saw a confusing array of vials, syringes and suppositories. I thrust the box back toward her. “This is all for you to use, right?”

“No, they’re for you,” she said. “If your father needs them, you can call us. Put the box in the refrigerator where you can find it fast.” Then she left.

I immediately regretted that I didn’t ask her to go over each and every medication and how to use it, recording her explanation using my cellphone.

Later on, when I hired the aide services to help us through the final days and nights, I found out the aides weren’t allowed by their companies to prepare the needed antianxiety and sedative medications, and they could only give them to the patient when directed by someone in charge, meaning me. If I wasn’t awake to direct them, my father wouldn’t get his comfort meds.

As my shaking hands prepared morphine syringes and crushed Ativan pills in the middle of the night, I thought, “I would never expect or want someone like me to do this for me.”

My advice: When you’re doing those early interviews with prospective home hospice providers, ask who will actually dispense the medications. Maybe you’ll find out the home hospice nurses will be there to do it. But in our case, they weren’t.

My father died on Oct. 25, 2015, after his 11 days of home hospice care.

Was it the good death my dad had hoped for? I’ve never shared this with my siblings, but I don’t entirely think it was. My father had always prided himself on being the problem solver, not the problem maker. While we tried to hide our distress, he couldn’t help but notice how unprepared his kids were to supervise this 24/7 medical undertaking.

One late night, as I lay awake on the king bed beside my restless father in his little hospital bed, he told me he was sorry about “all the trouble I’m causing,” as he put it.

“I didn’t imagine it would go like this,” he said quietly. “No help. No sleep. Not knowing what’s coming next. Thank you for everything you’re doing.”

I reached over and touched his hand. “Dad, I am so grateful to be here helping you through this after all you’ve done for us. Please don’t apologize. You’re no trouble at all.”

Later, I heard friends’ stories of their supported and peaceful experiences in dedicated hospice facilities. There, they could quietly share smiles and good memories, listen to music, even be served meals. A facility can perhaps more easily arrange quality-of-life options for the patient, such as expert bathing and therapeutic massages with oils. Most important, a facility would presumably be staffed with professionals who could administer the proper palliative medication. A place that’s designed and intended for end-of-life care clearly has some advantages.

If, however, you’re with the majority who would prefer using hospice in a familiar home setting, look into what’s entailed well ahead of time. Ensure that family or friends are willing and able to coordinate all the activities and decisions. Have a credit card ready for all the purchases and extra help you may need. And don’t make hopeful assumptions, as I did. Be proactive and ask the necessary questions, so you or your loved one gets the quality end-of-life care all of us deserve.

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To ease my depression, I volunteered to help dying people

— As a hospice volunteer, I expected tears and anger. What I didn’t expect was the laughter and joy.

by Keri Wiginton

My 90-something friend is relieved as I help him collect coats. He’s taking a trip somewhere his family can’t follow, he says, but he doesn’t want them to get cold after he leaves. I keep packing even though his story doesn’t make sense, at least not to me.

Gray clouds catch his eye, and he switches gears to the weather. I ask him what else he sees out the window. He dives in and out of his past, joking and smiling along the way. He was quite the ladies’ man, he says with a wink.

Twice a week for more than a year, I’ve given my time to the dying. Most people I visit have Alzheimer’s disease or another form of dementia. As a hospice volunteer, I expected tears and anger. What I didn’t expect was the laughter and joy.

How did I get here?

It was my therapist’s idea.

A few years ago, my 14-year-old cat suddenly got sick and died. Something in me broke when I felt her stop breathing. Still reeling from the loss, I found out my stepfather had a fast-growing brain tumor. He died five months later.

I learned how different the day feels when you know it might be your loved one’s last, and every second felt saturated with significance.

I savored every dad joke, every spoonful of ice cream, every mundane movie night. And when I watched him unwrap Christmas presents for the last time, I felt hyperaware of how much I’d miss his tendency to tear up no matter how small the gift.

My low mood persisted long after his funeral but not because of my sadness. The experience shifted my perspective on life. Unlike prior depressive episodes, regular exercise, mindfulness meditation, antidepressants and avoiding alcohol weren’t enough to bring me back this time.

So, my doctor set me up with a goal-oriented behavioral counselor.

I told the therapist about my stepdad and that I felt a profound pull to help others process grief or make meaning before their death.

We agreed that volunteering in a hospice might be a good fit, but I felt too overwhelmed to get started. He said to take one small step each week.

I looked at the nonprofit’s website and noted the volunteer requirements. A few weeks later, I applied. It took me three months to go from thinking the whole thing seemed impossible to attending my hospice-care training session. I wouldn’t get my first volunteer assignment for four more months.

That first day, my heart raced as I nervously sat in my car outside the memory care center. I’d never done anything like this before, but I’m glad I willed myself to walk in.

After that, I relaxed into my new role visiting people who are dying.

I give caregivers a chance to nap or run errands. While they’re out, I get to socialize with their loved ones as we listen to big band music from the ’40s, play Scrabble or go outside to feel the warmth of the sunshine while we chat.

Many of the folks I spend time with have memory challenges, so conversations may take twists and turns. I’ve learned to explore with them whatever path they’re on, and we often have fun doing it.

I find immense value and grounding in offering companion care to someone who’s nearing the end of life. I look forward to it every week.

Health professionals in the United Kingdom routinely recommend so-called social prescribing, linking people up with something that matters to them, whether it’s working in a garden, at a museum, or in my case, hospice and memory care.

“People are sometimes scared to develop a relationship with someone who has dementia,” said Rebeca Pereira, a psychology master’s student at the University of Saskatchewan who studies relationship-building in long-term care settings. “But we found that volunteers see that the person is much more than the disease.”

Pereira’s research mirrors my experience. Plus, when I make someone’s day a little brighter, I feel warmth in my chest similar to what wells up during a meditation session called loving kindness, a mindfulness practice where I imagine sending joy out into the world.

My compassion leaves a lasting impression even if my identity doesn’t.

Stephen G. Post, a bioethicist at Stony Brook University and an expert in compassionate care and the relationship between giving and happiness, explained why.

“People with dementia can be very emotionally sensitive and they can pick up on that presence,” said Post, who explores this topic in his book “Dignity for Deeply Forgetful People: How Caregivers Can Meet the Challenges of Alzheimer’s Disease.” “Just because someone’s linear rationality is compromised that doesn’t mean their consciousness is.”

I feel a sense of loss when people die, but our time together matters more because I know it’s short term. I also have found myself to be more present and less anxious, both when I’m volunteering and when I’m not.

I sleep easier at night and am less distracted at work. I have more energy to exercise and stronger shock absorbers for life stressors, including handling little problems such as someone cutting me off in traffic or big challenges like a family member’s Alzheimer’s diagnosis.

A cascade of chemicals such as dopamine, oxytocin, and other endorphins are probably responsible for the “helper’s high” that follows an act of kindness, said Post. These hormones are part of the mesolimbic pathway that responds to food or social rewards, he said, which helps humans cooperate and survive.

In other words, “you’re wired to feel better through doing this,” said Post.

At the same time, pathways that fuel depression symptoms may turn off, “including feelings of bitterness, hostility, rumination and other destructive emotional states,” Post said.

I feel more confident in other areas of my life because I feel successful at volunteering.

“This sense of competence may boost your self-esteem so that when stressful things happen, you feel better able to cope with them,” said Ann-Marie Creaven, an associate professor of psychology at the University of Limerick in Ireland.

We also have a fundamental need to belong to a group or to feel “that we’re important in someone’s life,” said Creaven. And this social connectedness piece may hold the key to how volunteering eases depression for people like me.

My social anxiety skyrocketed after the pandemic. But volunteering offered a structured, time-limited way for me to get out of the house. The more I did it, the more comfortable I felt in my role and around other people.

Because I found hospice work so meaningful, I began volunteering every other week during the school year to help grieving children explore the death of a parent through therapeutic play.

There, I bonded with a group of volunteers. We checked in with each other before and after each session, away from the kids.

Dana Basch, a licensed counselor and community grief specialist with Agrace Grief Support Center in Madison, Wis., where I volunteer, told me there is something “sacred” about coming together for a common purpose as personal as grief.

“There’s value in being able to help somebody else who’s going through something that you went through,” said Basch. “That absolutely helps volunteers heal.”

I also found that helping kids use play to work through their feelings around death can be joyful and, well, fun.

“There’s this idea that grieving kids are sitting around a circle crying,” said Jessie Shiveler, Agrace’s community grief manager. “People don’t understand that there’s laughter here, there’s smiles, there’s a connection.”

I developed a greater sense of peace and purpose after several months of face-to-face volunteering for two to four hours a week, which lines up with the suggestion of two hours a week from Post.

A caveat is that acting altruistically probably won’t trigger the same reward pathways for someone who feels forced into it. And it’s possible to overdo it.

“If any volunteering or care behavior gets to be too much, it can become a stressor in itself,” said Creaven.

According to Post, volunteering for health is kind of like exercise. It doesn’t work for everyone, but most people who do it find a benefit.

“I don’t think there are any guarantees on happiness advice,” Post said. “But I think that you’re better in the long run if you’re reasonably generous and kind.”

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