Category: Caregiving

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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.

Complete Article ↪HERE↩!

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End-Of-Life Workers Are Sharing The Major Things We Get Wrong About Death

Palliative and hospice care physicians, nurses and social workers discuss the biggest misunderstandings they see.

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The one big thing that people have in common is that we all will die, and we likely will experience the death of someone we love, too.

And yet despite this shared future, death can be hard to talk about, because it’s not an experience that anyone can report back from to say how it went. When you or a loved one starts approaching death, the existential stakes can go from theoretical to personal, sometimes feeling emotionally, physically and spiritually fraught.

That’s why it can help to hear the insights of people who see death all the time, because understanding it now can help us better process grief about others and feel more at ease when thinking about our own mortality.

I had conversations with palliative and hospice care physicians, nurses and social workers that comforted me, surprised me and challenged my own assumptions about death. Maybe they will for you, too.

Here are some of the biggest misunderstandings they shared with me about death and what the reality actually is:

The physical process of dying doesn’t look like it does in the movies.

This was a repeated theme among the experts I spoke with. Pop culture may have you thinking that death happens quietly and quickly, with eyes closing and arms crossed, but dying from natural causes often looks different in real life.

“My own dad said to the nurse, ‘I’m about ready to hang it up,’ and then he died minutes later. But that type of death is very uncommon,” said Penny Smith, a hospice quality manager and registered nurse in Washington state.

In her decadeslong career, Smith said she’s only come across a few instances in which people died quickly.

“It’s usually more of a process where they go into that unresponsive state, and there’s all kinds of things going on with their body. Their color’s changing, their breathing is changing and then they finally slip away,” she said.

Smith started posting TikTok videos about working in hospice care during the COVID-19 pandemic shutdown of 2020 and has since amassed around 640,000 followers on the platform. She uses skits and sound effects to educate people on what it’s like to be in the room with someone who is dying, covering topics like deathbed visions to the sounds that dying people make.

Common responses to her TikToks are comments of relief, acceptance and commiseration at seeing someone describe an experience that resembles how their own loved ones died.

“I, as a hospice nurse, have been with so many families where they were really disturbed by what they were seeing, or scared. And I would say: ‘That’s normal. We see that all the time.’ The relief is palpable,’” Smith said.

In one TikTok, Smith explains that when a person’s body is “shutting down,” it’s normal if they do not want water. A top comment on the video reads: “Thank you for this. My mom stopped drinking when we knew she was going to pass and I still felt like I should have tried to have her drink water more.”

Among all the physical processes of dying, Smith said the biggest misunderstanding she sees is when family members worry that their loved ones are dying of starvation because they’ve stopped wanting to eat.

“These are people who are already dying. They don’t need the food,” Smith said. “And when the family starts to try to force them or coerce them into eating just by, ‘Come on, just have a bite just to eat something,’ it just sets up so much stress between the family and the person.”

Similarly, families often worry that the use of morphine and other opiates will hasten the death of loved ones, according to Frances Eichholz-Heller, a senior social worker for the palliative care consult service at NewYork-Presbyterian/Columbia University Irving Medical Center.

“Some people will say to me, ‘Well, we had an uncle who was in the hospital dying, and then as soon as they put the morphine on, he died really quickly,’” Eichholz-Heller said. “I have to explain to them: ‘Well, he probably died really quickly because he was dying. He wasn’t dying because of the morphine, but they put him on the morphine to help.’”

Families can live with a lot of regret over what they should have done.

If you are seeking to support a loved one who is dying, be mindful of how your own fear and discomfort could impact what a dying person shares with you, said Dr. Aditi Sethi, a North Carolina-based hospice physician and end-of-life doula.

According to Sethi, some dying people try to talk about their experience with loved ones but the families dismiss it because of their own discomfort, using language like “You’re not dying, don’t worry about it.”

“So many times, loved ones have the most regret,” Sethi said. “They’re so terrified of losing their loved one that they can’t be fully present to their loved one at the time when they need them the most, really — to hold their hand and to really honor what they’re going through, and have a space to share what they’re experiencing in this epic journey they’re about to embark on.”

But if you had a strained relationship with the person before they were dying, don’t feel like you have to force a connection that is not authentic, either. “Your relationship with the dying person is personal, and if you didn’t have a good relationship, you are not obligated to go and be with that person,” Smith said.

It’s also important to provide space for people to be themselves when they are grieving, said Ladybird Morgan, a California-based registered nurse, palliative care consultant for the company Mettle Health, and co-founder of the Humane Prison Hospice Project nonprofit.

“I really ultimately believe that what happens is what needs to happen. And I see a lot of suffering for families that get left behind when they feel like they should have done something different,” Morgan said. “You grieve the way you’re going to grieve. You let go the way you’re going to let go. I tend to want to be careful about saying, ‘You should do X, Y and Z.’”

Not everyone wants silence or a somber mood when they are dying.

Health care providers and family members can make assumptions about what a dying person would find comfortable, without considering what that person truly enjoys. Some people may desire silence, but others may welcome raucous celebrations.

Smith recalled worrying about a football game party happening in the room of a dying woman until one of the patient’s adult sons reassured Smith that this was her passion.

″[The son] said: ‘Oh, my gosh, she was the queen of football parties every Sunday [with] everybody in the neighborhood. Yes, she loves this,’” Smith said. “I was new in my hospice career and making assumptions about what I thought a dying person would want. I thought they would want a quiet, dark room, and that’s not necessarily the truth.”

Not enough people plan or talk about how they want to die.

Most Americans say that given the choice, they would prefer to die at home, but about 1 in 5 deaths in the U.S. occur after admission to an intensive care unit. In the book “Extreme Measures: Finding a Better Path to the End of Life,” Dr. Jessica Zitter details what she calls the “end-of-life conveyor belt” — a type of care in which dying ICU patients receive painful treatments to be kept at alive at all costs.

“Unfortunately, by the time someone is on the conveyor belt, it’s often too late to talk to them about what they want. And then everybody is trying to play catch-up. And it’s hard to get it right when the chips are down and there’s so much emotion,” said Zitter, who specializes in palliative medicine and critical care.

“So my recommendation is to talk about these issues early on in life, maybe starting when you become an adult. Start to think about your mortality, and visualize how you would want things to go for you when you get into that stage of life, the end stage. Communicate honestly.”

“The people that I notice that have the least amount of distress are the ones … [who] have lived really fully, and that they can say to themselves, ‘I was here.’”
– Ladybird Morgan, a palliative care consultant at Mettle Health.

Filling out forms for so-called advance care planning goes a long way. But “it’s as important that you, number one, identify a person you trust — or two or three [people] — that can honor your wishes,” Sethi said, “and have the conversations ahead of time, before you’re in the state where you can’t communicate your needs and wishes.”

Some hospice workers recommended Five Wishes, an advance care planning program, as one way to get clarity on how you want things to go.

Morgan recommended playing a card game called GoWish with a friend, a partner or someone else you hope will follow your end-of-life wishes. “[The cards] have different statements on them about possibilities of what you might want or not want,” she said. “And you make stacks of the ones that you like, the ones that you know you don’t care about, and the ones that you’re not sure about.”

Someone playing the game may find it difficult to choose which cards represent their values, which is why Morgan suggests having two people play together, so that it can be a conversation starter.

Keep in mind that there is no one right way to die, and preferences may differ.

“There are people who feel that every moment of life is precious and that they value the length of life over the quality of life,” Eichholz-Heller said. “So they are willing to endure a certain amount of suffering to be able to be kept alive. Then there are other people who value quality of life over length of life. And they would rather focus on comfort, even if it means that they won’t live as long.”

There are still a lot of negative associations with hospice care, even though it can be helpful.

There’s a difference between palliative care and hospice. Palliative care workers help to make patients comfortable at any stage of their life if they’re suffering; hospice is a medical service specifically for people with a short-term life expectancy. While anyone living with a serious illness can seek palliative care, Medicare will help cover hospice care costs for people in the U.S. if their health care provider certifies that they are terminally ill and have six months or less to live.

Some people wrongfully assume that going into hospice automatically shortens the life of a patient. Smith said she has been called a murderer for working in hospice care, adding that the worst myth about hospice workers is that they kill their patients.

“People think that when you go on hospice, it’s a death sentence and that death is imminent,” Smith said. She cited former President Jimmy Carter, who entered hospice care in February and is still alive today, as one prominent example of how that is not always the case.

In fact, research shows that seeking palliative care at an early point can improve quality of life. Published in 2010, one study on advanced lung cancer patients found that offering early palliative care on an outpatient or ambulatory basis led to fewer clinically significant depressive symptoms and a longer median survival.

“When patients are suffering, they use so much of their energy just to fight the suffering that if we can make them comfortable, they sort of stabilize,” Eichholz-Heller said. “And a lot of times, it really helps them to live longer.”

Hospices can differ in their approach to care and the additional services they offer. There are resources that can help you figure out the right questions to ask to select the best hospice for you or a loved one.

We can’t control death.

There can also be a misunderstanding about the medical community’s ability to defeat death — even from health care workers themselves.

“The biggest misunderstanding that I see [among] patients, families and even health professionals around the issue of death is that we think we can control it,” said Dr. Solomon Liao, a UCI Health physician in California who specializes in palliative medicine and geriatric pain management.

“We believe that with all of our machines, technology and medications, we can determine when or even if that happens. Instead of accepting death as a natural endpoint of this life, we get depressed and even angry when it happens. We avoid planning for it or even talking about death, and then are shocked when it happens.”

The reality is that we can’t control death ― and we’ll all experience it at some point. “The people that I notice that have the least amount of distress are the ones — not so much that they’ve controlled every element, but that they have lived really fully, and that they can say to themselves, ‘I was here,’” Morgan said. “And people around them can honor that and acknowledge that like, ‘Yeah, we saw you, we felt you.’ … And that was so important for them, allowed a deep relaxing into what was coming next.”

At the same time, it’s OK not to be ready.

Morgan said many conversations around death and dying have focused on making sure someone is ready and not as much on cases in which a person loves life until the last minute and is not ready to go.

“It’s OK to miss life,” she said. She recalled talking to a client about how he knew everyone else was going to be all right after he died, and how that was heartbreaking for him.

In our conversations, hospice and palliative care providers suggested that it’s helpful to keep an open mind about death — leaving space for it to be “both and,” as Morgan told me.

Death can be devastatingly sad, but it doesn’t only have to be a somber occasion, as Smith’s TikTok skits show. Dying may be painful due to a terminal illness, but it’s not inherently so, Sethi said.

“It can be positive and hard,” Morgan said. “It can be, ‘It was exactly what needed to happen, and they had a beautiful death’ and ‘Wow, was that hard to see them go because I would’ve loved to have had them around for 10 more years.’”

Complete Article ↪HERE↩!

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What to Expect When You’re Expecting an Older Parent to Move In

— To start, you will probably be unprepared, no matter how much time you have to get everything in order

Conversations about money shouldn’t come first, but it shouldn’t come last either, and as difficult as it can be, opening up about who’s paying for what (or not) does in fact get easier with time.

By M.P. Dunleavey

When my brother suggested that my father move in with him last year, it seemed like a no-brainer.

Dad was almost 91 then, and couldn’t really live alone any more. My husband and I (and our grouchy teenage son) lived near Dad, but we were feeling the strain of grocery runs and doctor appointments — and worrying about our son’s iffy high school grades.

If Dad moved in with my brother and sister-in-law, he’d have support and care; we’d be able to focus on getting our son from high school to college; and my brother would get a little extra income. A win-win-win!

So why didn’t things go as planned?

Hello, Blind Spots

Turns out that despite our best intentions (and you know what they say about good intentions), we were woefully unprepared — like many other well-meaning, middle-aged “kids” who take in a parent.

“Typically there’s no planning when an elderly parent moves in,” says Jennifer FitzPatrick, MSW, author of “Cruising Through Caregiving: Reducing the Stress of Caring for Your Loved One.”

“Despite our best intentions (and you know what they say about good intentions), we were woefully unprepared — like many other well-meaning, middle-aged ‘kids’ who take in a senior parent.”

That surprised me. If you’re in the middle of a health or financial crisis, as many families are when they take in an older parent, of course there’s no time to stop and think. But we had a few months to lay the groundwork for this transition — the timing, the cost, the logistics.

While those practical issues are important, many families experience a kind of caregiver shock because they underestimate the impact of the move on their personal time and space, their relationship with the parent/grandparent, and even the emotional dynamics within the immediate family itself. “A lot of people worry about the big things,” FitzPatrick says. “Like, what if Mom falls in the middle of the night? But it’s really the little things that build up.”

Given that multigenerational households in the U.S. are increasing, you’d think our collective ability to foresee some of these problems would also be expanding. But although over 50% of those living with adult relatives other than a partner or spouse say it’s convenient / rewarding all or most of the time, 23% say it’s stressful all or most of the time, and 40% say it is stressful some of the time, according to a 2021 survey by the Pew Research Center.

Surprise #1: Meet Your New Roomie

Why, exactly, is it so hard to adjust to the realities of shared living quarters with your aging mom or dad? Because . . . after decades of not living with your parent(s), FitzPatrick says, suddenly you’re roommates, with all the intimacies and frustrations that come with that arrangement. Like: Where do you put the used pull-up diapers? Is there a senior Diaper Genie? Should you just use a regular Diaper Genie?

Sorry to get right to the nitty-gritty, but these are the things that come up.

So, while rearranging the furniture and getting your parent to their physical therapy appointments is essential, also brace yourself for a string of minor irritations in the day-to-day that can really fry your nerves.

Surprise #2: Past Is Still Present

Making the roommate vibe worse is that your new roomie is actually your parent, and you’re not starting with a clean slate; you’re carrying some baggage. Whatever your traditional patterns are with your mom or dad, they don’t go away just because now they’re depending on you. As FitzPatrick put it: “The dynamics are so wonky.”

“Once your elderly loved one roommate moves in, everything gets magnified.”

Wonky is as good a word as any to describe how convoluted it feels like to deal with an aging parent who no longer calls the shots — yet they may think they do, or they may try to, or you may let them — or you may find yourself in a constant state of irritation and guilt because — wtf!

You know?

So while it’s tough to anticipate what the likely tension points might be, it’s not impossible. You just have to be honest with yourself — because once your elderly loved one roommate moves in, everything gets magnified. Being aware that these complicated feelings are naturally going to arise, in one way or another, can help you to spot them and — maybe — find more rational (or compassionate) ways to ease the situation.

Getting therapy is also a thought.

Surprise #3: Mind the (Expectation) Gap

When a senior parent moves in, one of the things you do to age-proof the house is to remove tripping hazards: slidey throw rugs, say, or your kid’s skateboard that lives in the foyer.

In the same way, you have to find a way to identify and articulate hazardous intra-family expectations so they don’t knock you sideways.

One of the biggest expectation gaps in families, FitzPatrick says, is around downtime. I thought she was going to flag money as a hotbed of miscommunication and crossed expectations. Because it is. But downtime can be even worse in a family caregiving situation because expectations can get muddled on so many levels.

Complete Article ↪HERE↩!

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What Happens to Patients After Taking End of Life Drug

Julie McFadden, a hospice nurse in California. McFadden has spoken publicly about end of life care as she tries to educate people about how death with dignity takes place.

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Many people might not like talking about end-of-life care or death until they’re faced with it themselves, but this hospice nurse wants to remove the taboo from the topic and educate people instead.

As an intensive care unit (ICU) nurse for over a decade, Julie McFadden, 40, focused on keeping patients alive, but when she made the switch to hospice care eight years ago, her attention turned towards making people feel comfortable as they neared the end.

McFadden, from California, regularly talks about the realities of hospice care, and what happens when a patient opts for medical aid while dying, on social media. She told Newsweek: “My main point is to make everyone a little less afraid of death. I want to change the way we look at death and dying.”

Medical aid in dying (also referred to as death with dignity, physician-assisted death, and aid in dying) is the prescribing of life-ending medication to terminally ill adults with less than six months to live, who are mentally and physically capable of ingesting the medication independently.

At present, only 10 states and the District of Columbia permit this process, but there is growing support elsewhere. A survey of over 1,000 people in 2023 by Susquehanna Polling and Research concluded that 79 percent of people with a disability agree that medical aid in dying should be legal for terminally ill adults who wish to die peacefully.

States where it’s permitted include Colorado, California, Washington, Hawaii, Maine, Montana, Oregon, and Vermont. Legislation is also being considered in Massachusetts, New York and Pennsylvania.

How the End of Life Drug Is Administered

As a hospice nurse in California, where a bill was passed to permit death with dignity in 2015, and became effective from June 2016, McFadden has assisted many patients who wanted to die on their terms.

She believes that there is real beauty in someone being able to have full autonomy over their death and choosing when they go, but she knows it’s a polarizing issue.

“People have to remember that not everyone has the same beliefs and I think it’s a beautiful thing that someone gets to have control over,” McFadden told Newsweek. “It’s powerful to witness someone be so alert, say goodbye to their loved ones, have their loved ones watch them take this drink and then die, but still be willing to be there to support them.

“I think most people in the U.S. have no idea that this law even exists, and even when I give very descriptive explanations of what the law is, what it means, what the criteria is, there’s still people who think I’m just overdosing patients with morphine.”

In order to acquire the medication, an individual’s request must be approved by two doctors, they have to undergo a psychological evaluation to ensure they aren’t suicidal, and doctors have to confirm that the person is capable of making their own decisions. Patients with certain conditions do not qualify, including those with dementia.

If approved, the person must take the medication themselves, and they can have family, friends, and hospice staff present if they wish.

Since June 2016, in California 3,766 death with dignity prescriptions have been written, and 2,422 deaths registered. To protect the confidentiality of any individual who makes this decision, death certificates usually note an underlying illness as the cause of death.

McFadden continued: “There are a few drugs mixed in, it’s taken all at once and the initial drugs kick in very quickly, within three to seven minutes. This person who ingested this drug will fall asleep or basically go unconscious. I say fall asleep just so people can picture what it looks like, but they’re unconscious.

“Then, the body is digesting and taking in the rest of the drugs that are also in that mixture, which will eventually stop the heart. It’s a general sedative and then they take two different cardiac drugs to stop the heart.

“They have a change in skin color and changes to their breathing, in what we call the actively dying phase, which is the last phase of life.”

Hospice nurse Julie McFadden
Julie McFadden pictured, a hospice nurse in California. McFadden spent several years as an ICU nurse before going into hospice care in 2015.

People Have A Lot of Misconceptions

Regardless of whether you’re in a state that permits physician-assisted death or not, dying isn’t regularly talked about in a positive way.

One of the reasons why McFadden wants to have a more open conversation about it is to remove any prior misconceptions that people might have and educate them on what really happens.

“I have not seen anyone show signs of pain, but people are always concerned about that,” she said. “In general, if you’ve done this for a long time, if you’ve been in the healthcare system and work as a nurse or by someone’s bedside, you know what a body in pain looks like, it’s very obvious.

“A person who is unconscious and can’t verbally say they’re in pain will show you with their body language. Most people that have taken this medication who I have witnessed did not show those signs. I witness it day in, day out, but it’s pretty miraculous to see how our bodies, without even trying, know how to die. They’re built to do it.

“People get really angry and think I’m trying to hurt people. I always want to educate people around this topic, because the main thing people don’t want is for their loved ones to suffer at the end of life.”

As an ICU nurse formerly, McFadden explained to Newsweek that she was trained to keep patients alive, and they “didn’t have conversations about death early enough.” Despite patients being near death, they were kept alive through machinery for weeks or months, before ultimately dying on the ward.

Many of the country’s biggest medical associations are conflicted by death with dignity, with some choosing to endorse it, and others speaking against it. The American Public Health Association, and the American Medical Student Association are among the bodies to endorse it, but it has been publicly opposed by the American Medical Association and the American College of Physicians.

Julie McFadden spoke about end of life
Hospice nurse Julie McFadden, 40, from California, has been discussing death with dignity. Death with dignity is permitted in California, so McFadden has shared her experiences of helping patients go through that process.

Talking Openly About Death

In 2021, McFadden set up her TikTok account (@hospicenursejulie) to speak openly with her followers about death and answer any questions people might have. Many of her videos have gone viral with millions of views, and while she does get a lot of positive feedback, there is also plenty of negativity.

There are people who wholly disagree with her advocacy for death with dignity as they claim she is playing God, or that she’s promoting suicide. But by having an open conversation, the 40-year-old hopes to make people less fearful of dying.

Speaking to Newsweek, she said: “Most of my audience is general public, that’s why I don’t talk like I’m speaking to other nurses or physicians. I talk like I’m speaking to my families who I talk to in everyday life. I think death just isn’t talked about, or it’s not explained well.

“I’m seeing so many times that people who are willing to have difficult conversations about their own death, who are willing to say they’re afraid to die, those patients who were willing to ask me those things and talk to me about death, had a much more peaceful death.”

Complete Article ↪HERE↩!

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Care of the Body After Death

By Glen R. Horst MDiv, DMin, BA

Family members or close friends may choose to be involved in washing and dressing the body after death has occurred. Caring for a body is not easy and can stir up strong emotions. See Moments After a Death. Many people turn to health care providers and funeral directors for help. They find comfort and assurance in entrusting the body to those who provide professional services. The deceased may have left instructions for their after-death care to be handled by the health care team and chosen funeral home. Other people practice religions or belong to communities that view care of the body as a family responsibility. Their faith community, elders or neighbours provide guidance and support for hands-on care of the body. For some, this is a way of honouring the person – a final act of kindness to him or her.

This article outlines the steps involved in the care of the body after death.

In advance of the death

Talk to the health care team in advance about family or friend involvement in after-death care. You may also want to talk to the health care team about the supplies and assistance that will be required.
Washing, dressing and positioning the body

Washing and dressing the body is an act of intimacy and sign of respect. Those who were most involved in the person’s physical care may feel the most comfortable in doing this. Continued respect for the person’s modesty is essential.

Regardless of whether the person died at home or in hospital, hospice or nursing home, washing and positioning the body is best done where death occurs before stiffening of the body (rigor mortis) sets in. Rigor mortis happens within two to seven hours after death. Regardless of the location of care, you may need four to six people to help in gently moving and turning the body.

At home, you can wash the body in a regular bed. However, a hospital bed or narrow table will make the task easier. Since the body may release fluids or waste after death, place absorbent pads or towels under it. It is important to take precautions to protect yourself from contact with the person’s blood and body fluids. While you are moving, repositioning and washing the body, wear disposable gloves and wash your hands thoroughly after care.

Washing the person’s body after death is much like giving the person a bath during his or her illness.

1. Wash the person’s face, gently closing the eyes before beginning, using the soft pad of your fingertip. If you close them and hold them closed for a few minutes following death, they may stay closed on their own. If they do not, close again and place a soft smooth cloth over them. Then place a small soft weight to keep the eyes in position. To make a weight, fill a small plastic bag with dry uncooked rice, lentils, small beans or seeds.

After you have washed the face, close the mouth before the body starts to stiffen. If the mouth will not stay shut, place a rolled-up towel or washcloth under the chin. If this does not provide enough support to keep the mouth closed, use a light-weight, smooth fabric scarf. Place the middle of the scarf at the top of the head, wrapping each end around the side of the face, under the chin and up to the top of the head where it can be gently tied. These supports will become unnecessary in a few hours and can be removed.

2. Wash the hair unless it has been washed recently. For a man, you might shave his face if that would be his normal practice. You can find step-by-step instructions in the video Personal Hygiene – Caring for hair.

3. Clean the teeth and mouth. Do not remove dentures because you may have difficulty replacing them as the body stiffens.

4. Clean the body using a facecloth with water and a small amount of soap. Begin with the arms and legs and then move to the front and back of the trunk. You may need someone to help you roll the person to each side to wash the back. If you wish, you can add fragrant oil or flower petals to your rinse water. Dry the part of the body you are working on before moving to another. Some families or cultures may also choose to apply a special lotion, oil or fragrance to the person’s skin.

5. Dress or cover the body according to personal wishes or cultural practices. A shirt or a dress can be cut up the middle of the back from the bottom to just below but not through the neckline or collar. Place the arms into the sleeves first and then slipping the neck opening over the head, tucking the sides under the body on each side.

6. Position the arms alongside his or her body and be sure the legs are straight. If the person is in a hospital bed with the head raised, lower the head of the bed to the flat position.

The Canadian Integrative Network for Death Education and Alternatives (CINDEA) has a video series on post-death care at home that includes videos on “Washing the Head, Face, and Mouth”, “Washing the Body”, “Dressing the Body”.

Next steps

If a funeral home is assisting with the funeral, cremation or burial, call to arrange for transport of the body to their facility. If the death has occurred in a hospital, hospice or long-term care facility, the staff will arrange for the body to be picked up by the funeral home of your choice. In hospital, once the family agrees, the body is moved to the morgue and kept there until transported to the funeral home.

If your family is planning a home funeral or burial, cover the body in light clothing so it will stay as cool as possible. A fan, air conditioning, dry ice or an open window in the room where you place the body will help to preserve it.

See also: Planning a Home Funeral

For more information about providing care when death is near or after a death, see Module 8 and Module 9 of the Caregiver Series.

For additional resources and tools to support you in your caregiving role visit CaregiversCAN.

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How to take care of trans patients in hospice

By Dallas Ducar and Cathy Campbell

In the United States, more than 1.6 million people identify as transgender. Of these, more than one-fifth are over the age of 65, the vast majority of whom transitioned in the latter part of their lives. Transgender Americans are both living and dying among us: precisely why we health care providers must improve our approaches to ensuring dignified and respectful care for transgender elders, especially at the end of life.

What trans people hope for in their final moments of life — whether that is months, days, or hours — is no different than what anyone else wishes for. Trans people don’t want to be in pain. Trans people want their decisions to be honored. Trans people want a comfortable environment, to be treated with respect and dignity, and to be in the company of the loved ones they choose. We all want to live our last days authentically.

However, trans patients’ end-of-life journey poses unique challenges, many of which are rooted in their fear of being judged, intentionally or unintentionally humiliated, and excluded from critical care services, including pain relief — things that doctors, nurses, and chaplains sometimes unwittingly contribute to. And while mistreatment of transgender elders in hospice care — whether at home or elsewhere — can take many forms, it almost always stems from a lack of understanding or knowledge about transgender identity and needs, understanding what topics are within- and off-limits, and, in the worst cases, outright bias and discrimination.

We are both nurses. One of us, Dallas, has seen the impact of poor gender-affirming care firsthand and has co-founded a startup nonprofit, Transhealth, to provide, teach, research, and advocate for good gender-affirming care. The other, Cathy, has more than 30 years of experience working in hospice. We both understand that gender-affirming care is simply good health care, and too many are deprived of it, especially when unable to advocate for themselves.

When health care providers mistake patients’ gender or call them by their assigned rather than chosen name, it can be deeply distressing and disrespectful. Choosing a new name is one of the first, most profound public declarations a trans person goes through when first transitioning. Likewise, intentionally keeping one’s birth name amid a gender transition can be a sacred declaration, too. As such, it’s critical that clinicians get patients’ names right from the first meeting and use pronouns that match their patients’ chosen gender identities. Starting with their first interactions, health care workers should introduce their own name and pronouns, leveling the power imbalance, and then ask the individual for their name and pronouns. This is the first step in establishing trust.

Because trans patients’ unique health needs are often misunderstood, accommodations can be lacking, especially within the more specialized hospice setting. What does personalized care look like? It’s when clinicians take the time to affirm and support patients’ daily care rituals that match their gender identities. So a bedridden trans man who hasn’t had “top surgery” might need help binding his chest. A trans woman may need assistance shaving or doing her hair or makeup. Providers should also be supportive of patients’ continued use of hormone therapy, even if it interacts with other medications or diagnoses. One’s social embodiment remains vital even if at the end of life.

Because trans patients sometimes arrive for care in hospice facilities in a stage of advanced need, clinicians caring for trans communities must be extra vigilant as they manage symptoms and offer support and respect. Encountering health care workers who are reticent to care can compound feelings of isolation, discrimination, exclusion, and lack of acceptance. Trans patients might also be held at a distance by fellow hospice patients and their family members. Given that, clinicians must go above and beyond with their trans patients, regularly checking in in all the usual ways (How’s your pain? What do you need? How are you feeling?) as well as ways more specific to their gender identity (Do you have what you need to support your gender identity and gender expression? How is your circle of support being included in your care? Is anything/anyone keeping you from feeling comfortable and like you belong?).

Education is a critical component of delivering gender-affirming hospice care, too. Whether health care systems require it or not, care providers at all levels must take trans-inclusive care courses and training, like the courses offered by GLMA and the Fenway Institute, to fully understand the issues trans patients face. Such learning reinforces behaviors and builds knowledge about what respectful, nonjudgmental, and supportive care looks, sounds, and feels like.

Beyond day-to-day care are social and economic considerations and how they’re affected by a patient’s gender identity. Care providers can ask gentle, open-ended questions to assess whether additional support or resources might be needed: Do you struggle paying for rent, food, utilities, or your medications? Are there any issues with violence at home? These basic questions apply to all individuals, but transgender people are at greater risk for food insecurity, housing insecurity, and safety concerns, so it’s even more important to address them as part of a plan of care.

Conversely, curious questions unrelated to trans patients’ palliative care and well-being are wholly inappropriate. Off-limits are questions like: What was your name before you transitioned? Have you had surgery? What do your family and friends say? Are you a man or a woman? It’s vital that clinicians be aware of the harm these questions can cause.

There are administrative considerations, too. Hospice and palliative care providers often discuss the benefit of advanced directives, which are legal documents that outline the passage of care decision-making responsibilities when the patient is unable. Because transgender patients are sometimes estranged from biological family, these conversations and documents have particular relevance, and health care workers should pursue patients’ wishes while they have the ability to choose who will decide for them at life’s end if not their relatives. Even if a complete legal document isn’t finalized, partial directives are better than no directives at all.

Finally, it’s critical that clinicians not assume that every trans patient’s life has been marked by suffering. Many, many trans men and women have had beautiful, affirmed, supported lives. Clinicians must not assume that all transgender patients are similar. Trans folks must be cared for as individuals first.

Trans elders are part of our communities, both in life and in death. Supporting the overall well-being of trans patients means acknowledging their humanity and affirming their identities as humans first. We, as health care providers and clinicians, must ensure our transgender elders live and die with their dignity intact and their authenticity respected. The quality of our care should reflect our shared humanity, undiminished by our differences.

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A friend at the end

— Volunteers ensure dying patients don’t face death alone

In 2005, Trinity Health started No One Dies Alone, a program where volunteers visit patients who are nearing death, standing by their bedside as they approach death. Volunteers accompany patients by holding their hands, read to them, play music or talk about life, and death, with the patients. The program was on hiatus during the COVID pandemic, but rebooted this past September.

Trinity Health’s palliative care program ‘No One Dies Alone’ sends volunteers to be with patients in final hours, give families respite

By Daniel Meloy

Dying is a personal — and often difficult — thing to discuss.

From choosing hospice care and drafting wills to an entire continuum of end-of-life care, there are many views about what’s best.

But there’s one thing most people can agree on: no one wants to die alone.

And thanks to a group of volunteers through Trinity Health, no one has to.

In 2005, a team of people at the Catholic health care system started No One Dies Alone, a palliative care program that assigns volunteers to be present with patients who are nearing death, standing by their bedside when family and friends can’t be present.

“No One Dies Alone is a comfort companion program for those patients who don’t have family or whose family can’t be present at the bedside 24/7,” said Barbara Stephen, bereavement specialist in the volunteer department at Trinity Health Oakland and Trinity Health Livonia. “Whether family and friends are out of state, or can’t get in right away, or are in need of respite care, we provide volunteers who can be there if needed. We’re a friend who looks for any kind of distress and keeps them company.”

Lisa Marie Blanek, a No One Dies Alone volunteer, reads a book bedside of a patient. The No One Dies Alone program has volunteer read to terminally-ill patients, play music or just hold hands with people as they near death. The program ensures no patient at Trinity Health’s Livonia and Pontiac hospitals dies without anyone else in the room.
Lisa Marie Blanek, a No One Dies Alone volunteer, reads a book bedside of a patient. The No One Dies Alone program has volunteer read to terminally-ill patients, play music or just hold hands with people as they near death. The program ensures no patient at Trinity Health’s Livonia and Pontiac hospitals dies without anyone else in the room.

The program started after Trinity Health’s Palliative Care Program did a study on end-of-life care around the country, noting 50% of patients die in a hospital, and of those, about 10-12% die alone, without family and friends at their side.

Through No One Dies Alone, volunteers keep patients company in their final days, doing everything from reading to patients, holding their hand, or calling a nurse if a patient is in discomfort.

“We are there to be at the bedside,” Stephen told Detroit Catholic. “We do a lot of hand-holding. We don’t do nursing care, but what we do is a lot of talking, prayers if they want, and just being that second set of eyes. If we see some distressing signs, like pain or a need for medical care, we call the nurse. We get a wet washcloth if they are running a fever, or Chapstick when their lips are chapped. We’re there to be that friend by the bedside, keeping an eye on them, letting them know they are not alone.”

No One Dies Alone took a hiatus during the COVID-19 pandemic, when volunteers weren’t permitted in hospitals.

The program rebooted last September, operating out of Trinity Health’s Oakland (Pontiac) and Livonia locations, with 38 volunteers at Oakland and 29 in Livonia.

No One Dies Alone volunteers typically operate on three-hour shifts and receive a brief report about the patient, including a person’s family situation, interests and condition. Volunteers often build a rapport with the patient’s family, stepping in to allow family members to get a bite to eat or a change of clothes at home.

Susan Abentrod practices tucking a patient in at the Trinity Health Oakland Hospital in Pontiac. No One Dies Alone volunteers are there to fill in the gaps for family and friends who can’t be with patients nearing death 24/7 and for doctors and nurses who are managing multiple patients at a time.
Susan Abentrod practices tucking a patient in at the Trinity Health Oakland Hospital in Pontiac. No One Dies Alone volunteers are there to fill in the gaps for family and friends who can’t be with patients nearing death 24/7 and for doctors and nurses who are managing multiple patients at a time.

“The volunteer who is coming in to (watch over) the person who is dying often is not able to talk to the patient, but they do talk with family, who are grateful they are there,” said Kelly Herron, visit coordinator for No One Dies Alone. “They appreciate that someone is stepping into the space for their family, knowing their loved one is being watched over.”

Volunteers are not meant to act as medical personnel or hospice workers. Their work is more a ministry of presence, Herron said.

“As a volunteer, our role is limited because we are there to hold a space,” Herron said. “It’s about showing up and being a companion, being willing to talk about the things they want to talk about. It’s about being a friend and putting them first, not being afraid to listen to them talk about what they are feeling as they near the end.”

Sometimes, volunteers can even fulfill special requests, such as having terminal patients see their pets one last time.

“A lot of patients have pets at home, and when we ask them if they have a wish, often they regret they’ll never see their dog or cat again, so we bring the pets in — as long as they are updated on their shots — so they can be with their owner,” Stephen said.

Sometimes, volunteers are a shoulder for family members struggling with the loss of their loved ones, Stephen added.

“We had a young mom who was dying, and she had a 7-year-old daughter, and the dad didn’t know how to tell the daughter,” Stephen said. “(The mother and daughter) shared a birthday, and we knew the mom wasn’t going to make it to the next birthday. We asked what they usually do for their birthday, and the dad said they always have a tea party. So we got the mom out of her hospital gown, had some nice pajamas for her, and got the daughter dressed up. My husband went to Costco to get balloons, and we had a tea party. We took pictures, not only for the daughter to remember, but for the mom to hang onto that memory. It’s not easy losing your mother at 7, but it was a lovely time.”

Barbara Stephen, bereavement specialist in the volunteer department at Trinity Health Oakland and Trinity Health Livonia, leads the No One Dies Alone program. She leads a team of volunteers who read to patients nearing death, get them an extra blanket if they need on, play their favorite music on the stereo and are just their for patients who are nearing death. The program is one of presence and accompaniment, Stephen said, just being there for those nearing the end of life.
Barbara Stephen, bereavement specialist in the volunteer department at Trinity Health Oakland and Trinity Health Livonia, leads the No One Dies Alone program. She leads a team of volunteers who read to patients nearing death, get them an extra blanket if they need on, play their favorite music on the stereo and are just their for patients who are nearing death. The program is one of presence and accompaniment, Stephen said, just being there for those nearing the end of life.

Most visits are more low-key, but the idea is the same: being with people in their hour of need.

Herron recalls her own experience of being with her own mother when she died, adding it was a comfort to both of them to know she wasn’t alone. It was Herron’s time as a No One Dies Alone volunteer that prepared her for her mother’s death, she said.

“When my mom died, I was sitting there with her,” Herron said. “Everyone thought she probably would die soon. It was the middle of the night, everyone went to sleep, and I remember holding my mom’s hand, saying, ‘I’m going to go to sleep. You go to sleep too, and I’ll talk to you in the morning. But I’m right here.’ I was just pulling my hand back to demonstrate that I was falling asleep, but I didn’t close my eyes. I just looked at her, and she opened her eyes and look at me before she died.

“To me, that’s why we do this,” Herron added. “If at any point, someone is going to open their eyes or squeeze their hand, it’s so comforting that someone is there — that they are not forgotten, that they are not alone, and that it matters to someone as you are making that transition.”

Barbara Stephen, bereavement specialist in the volunteer department at Trinity Health Oakland and Trinity Health Livonia, poses for a photo with No One Dies Alone volunteers, Chuck Pokriefka, Lisa Marie Blanek, Susan Abentrod and Joe Fugitt.
Barbara Stephen, bereavement specialist in the volunteer department at Trinity Health Oakland and Trinity Health Livonia, poses for a photo with No One Dies Alone volunteers, Chuck Pokriefka, Lisa Marie Blanek, Susan Abentrod and Joe Fugitt.

While No One Dies Alone is a comfort to the dying and their families, it’s also an added benefit to hospital medical care staff, who appreciate having an extra set of eyes and ears in the room.

“Our nurses are so compassionate, and they just want to be there. They don’t want anybody to be alone when it is the end of someone’s life, but they have a patient load,” Stephen said. “So when they see us, they are so excited. When our volunteers come in, the nurses ask if they can get us a cup of coffee, or if we need anything. They take really good care of us, because they appreciate there is always someone there with their patients.”

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