Category: Preparing for Death

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In my 40s I’ve started decluttering my house in preparation for my death

– Everyone should

Swedish death cleaning, basically throwing out your crap so that others don’t have to do it when you’re gone, is truly comforting, says Sophie Morris

By Sophie Morris

I have a stash of travel guides that take up two shelves in my home. They’re all completely useless, of course – out of date and pre-smartphone. But while clearing out my house before letting the builders in a few years ago, I struggled to get rid of them. The vintage guidebooks to foreign countries and capitals remind me of the places I’ve been and the life I once had. My youth. Does getting rid of them mean accepting I will never live in Spain?

But when I factor in my daughter, and think about how she’d feel if I left her with a stack of pointless books, saying goodbye becomes much easier. I’d far rather she has some online photo albums of my travels to flick through when I’m gone than break her back lugging books to the tip. We’ve started to feed them to the fire together, reading pages as we go and dreaming about future holidays and real-life experiences that I’d love to share with my family instead of clinging onto bulky possessions.

I have begun, inadvertently, döstädning – Swedish death cleaning. I’m in my 40s and I’m not ill, unless you count my fear of clutter as an ailment. Nor am I a Marie Kondo-obsessed minimalist. I’m happy to have stacks of books and toys around the house, and shoes and coats piling up in the hallway.

Think of döstädning as a gentle, considerate Kondo. It’s an approach to organising your life – which the Swedes apparently have always done as they age – to prepare for death. It has been translated and popularised for the rest of us by the author Margareta Magnusson, whose book The Gentle Art of Swedish Death Cleaning was an international hit, spawning a TV show (out on Peacock earlier this year) and Magnusson’s 2023 follow-up, The Swedish Art of Ageing Well.

What is Swedish death cleaning? “Basically throwing out your crap so that others don’t have to do it when you’re gone,” says Amy Poelher, who produces and narrates the TV show. But it leaves people feeling enriched rather than robbed, which I know more than a few KonMari acolytes felt once the seasons changed and they had only three pairs of pants and one coat to see them through the winter.

Magnusson came to death cleaning after losing her own mother and husband. She realised that having to sort through housefuls of clutter and useless possessions makes the grieving process even harder. When done properly, according to Swedish folklore, döstädning means taking a gap year after you retire to declutter and organise your home and belongings. While cleaning, we’re forced to think about the stuff we own and our attachment to it, which brings with it a natural emotional cleansing.

Perhaps more importantly, the aim is to consider whether these items will hold value for those we leave behind. If not, they are simply a burden. Therefore, as you consider and confront mortality – something British people are notoriously squeamish about – you also enhance the time you have left and let your loved ones know they have been thought about too.

“Death cleaning isn’t the story of death and its slow, ungainly inevitability,” writes Magnusson. “But rather the story of life, your life, the good memories and the bad. The good ones you keep. The bad you expunge. A loved one wishes to inherit nice things from you. Not all things.”

As the children of boomers who, it sometimes seems, remain in possession of most items they’ve acquired during their long years, my husband and I are both hyper alert to not hanging onto stuff. If we’re putting something in the loft, we’ve always paused to ask if it’s for future use, or just because we can’t face sorting through it. Shows about hoarding on TV typically present extreme examples, which are often health and fire risks. But when you look at most people’s homes, hoarding seems to be the norm rather than the exception.

When my great-aunt died in 2019, my parents were left to sort through her house. Luckily, they are both retired, but they spent months driving back and forth to her modest two-bedroom house to sift through her and my great-uncle’s lives well-lived. So when my Dad later sent me a box of my own school reports and certificates (every piece of paper from the age of three to 18!), I realised he was saving me and my sisters a job and was grateful.

Over the past two years, I’ve become much more ruthless and begun conscientiously Swedish death cleaning. Prompted by the travel guide saga in 2021, I began to see the incredible volume of unused, unloved and, often, useless stuff a family of three in a modest semi was holding on to. We went through the döstädning process then, when we moved out for renovation works to begin, and we did it again when we moved back in a few months’ later.

Most weekends since have involved trips to charity shops, posting items for sale on Facebook Marketplace, eBay, Vinted or local resale WhatsApp groups, or seeking out younger children who might benefit from our daughter’s old clothes and books. Everyone else is at it, too. My – exceedingly lucky – seven-year-old has recently received Jill Murphy’s Worst Witch series, a whole stack of Pamela Butchart books and a complete winter wardrobe, all for free, from our kind neighbours.

One particular sticking point for me has been books. My collection feels a bit like a sourdough starter: alive, always growing, demanding to be fed, prone to surprises and unmanageable. I have made the (extremely conservative) estimate that a minimum of 20 new books enter the house for me each year for work and pleasure. Therefore, I must identify and pass on at least 20. This is not easy, but I plough on, making slow but steady progress. (Don’t worry, I’m not turning them all into fuel. They’re going to keen readers and charity shops.)

Another area of my life where I think about döstädning, and I think this is the most important one, is when I am buying something. If it never gets into my house in the first place, I won’t have to waste time wondering how to get rid of it.

So what have I got from all this death cleaning? I’ve found plenty of comfort in Scandinavian lifestyle trends in recent years: I was a shoo-in for hygge, the Danish concept of building yourself a cosy and comfortable lifestyle, and was born to embrace fika, the Swedish concept of taking time each day to relax and connect over coffee and a cinnamon bun. But death cleaning feels so much more significant and truly comforting, compared to cosiness and cake.

How to Swedish death clean

  • If you are genuinely preparing for death because of illness, or feel old enough, it can be wise to tell loved ones that you are Swedish death cleaning. It’s not meant to be bleak, but an act of kindness created with survivors in mind.
  • Work top to bottom – from your loft down to your everyday living spaces
  • Don’t force people to take items they do not want to save your own guilt. This is a chance for open and honest dialogue about what family members might want now and when you are no longer here.
  • Leave sentimental items, letters and photos till last. Keep your own memory box. This is also your chance to dispose of or hide anything embarrassing!

Complete Article ↪HERE↩!

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Choosing a dignified death

— Stratford woman shares medical assistance in dying journey

Stratford resident and journalist Diane Sims, who is living with end-stage multiple sclerosis, recently received approval for medical assistance in dying (MAiD). She spoke with the Beacon Herald about that process and why she is choosing to end her life.

Approved for medical assistance in dying last year, Stratford’s Diane Sims recently spoke with the Beacon Herald about her journey and her choice to die with dignity.

By Galen Simmons

In making the decision on how and when she will die, Diane Sims is also choosing how she will live the rest of her life.Last year, the Stratford journalist and writer, who was diagnosed with multiple sclerosis in 1975 when she was just 17 and declared palliative two years ago, qualified and was approved for medical assistance in dying (MAiD).

“I never want to end up in a nursing home, especially after what we saw coming out of COVID,” Sims told the Beacon Herald in a recent interview. “My whole experience with nursing homes is they’re just places where you’re waiting for God. It was the lack of independence and privacy, and I worried about care because my care needs are high. I never wanted that.“And I’m a communicator, so when my hands stop working completely and my voice stops working, I don’t feel I have myself left anymore. MAiD is such a dignified way to go,MAiD and there’s no purchase in people giving me lectures about God because the divine and I are at peace with this.”

A nuanced decision

In Canada, qualifying and being approved for medical assistance in dying is a strictly regulated, yet nuanced, process. Dr. Stefanie Green, a MAiD practitioner and founding president of the Canadian Association of MAiD Assessors and Providers, said there are five criteria a patient must meet to qualify as eligible.

The patient must be 18 years of age or older and eligible for government-funded health care in Canada. The patient also needs to make a voluntary, written request free of any kind of coercion. The patient must have the capacity to make that decision, which means they understand what’s wrong with them, as well as their pros and cons of their treatment options. Finally, the patient must understand that an assisted death is irreversible.

Finally, the patient needs to have what Canadian law refers to as a grievous and irremediable condition.

“A grievous and irremediable condition is a term that is defined in the Criminal Code of Canada,” Green said. “It is the only medical practice I’m aware of that’s defined in the Criminal Code … so we know exactly what the law says about it. … It means there are three things that need to be true all at the same time. … The patient needs to have a serious, incurable illness, disease or disability. The patient needs to be in an advanced state of decline and capability. Capability really means function, so they’re no longer functioning the way they were before they had their serious and incurable illness, disease or disability.

“The third and final thing that needs to be true is that the patient has intolerable and unendurable suffering that cannot be relieved in any way they find acceptable, and that is a subjective criteria that the patient really gets to decide. It’s not for me to decide how much someone is suffering or how much they can endure.”

Once a patient meets those criteria as determined by two independent clinician assessors, there are two paths their MAiD journey can follow, Green said. The first is more straightforward. If doctors determine the patient’s natural death is reasonably foreseeable, meaning the patient is on a trajectory toward death based on their illness, disease or disability, and not that they will die within a specific time period, they are put on track one.

“The procedural safeguards (for track one patients) are some of the things I already mentioned,” Green said. “There needs to be a written request. It needs to be signed and dated. It needs to be witnessed. The patient needs to give consent at the time of their request and also immediately prior to administration of medications.

“A track two patient,” Green added, “is someone whose natural death is not reasonably foreseeable. Typically, they’re people with chronic pain syndromes that are less understood and more complex, or a patient who a clinician is just not comfortable saying their death is reasonably foreseeable. Track two patients have to meet all the track one eligibility requirements and procedural safeguards … and they have five extra procedural safeguards on top of that, (including) there has to be the input of someone with expertise in the condition that’s causing the patient’s suffering … (and) patients need to be made aware of all the reasonable and available means to reduce their suffering. … They need to be offered those means of reducing their suffering and they need to give serious consideration to accepting those means of reducing their suffering.”

A considered decision

Sims said she and her husband spent the year between her prognosis as palliative and her decision to apply for MAiD considering these alternatives and evaluating her quality of life.

While she was still getting some enjoyment out of life, her disease has confined her to an electric wheelchair and severely restricted the food she can eat. In recent years, she’s endured numerous hospitalizations and invasive surgeries, required round-the-clock care, and has suffered chronic pain, declining speech, jerky arms, spastic legs, shaky hands, a compressed lung and a dying colon.

Though she still finds enjoyment when she writes and paints, Sims knows there will soon be a time when that enjoyment will only be a memory.

“I know what’s coming and yet I look around at all this colour and I think, ‘How am I going to leave all this colour and close my eyes for the last time,’” she said. “I’m not there yet because I’m still working. I can’t keyboard very well anymore – my hands are really going – so that worries me. I notice it day by day almost.

“It is scary.”

Not everyone in her life understands or is willing to confront Sims’ decision. In a piece she wrote for Maclean’s magazine at the end of June, ‘How I Plan to Die’, Sims said her husband, Dennis, was initially horrified by the notion his wife was considering ending her life.

“Dennis was absolutely against it. I remember being outside on the terrace last summer telling him that’s what I wanted to do, and I knew his reaction because I’d known what it would be all along. He hated the idea. He felt it was a cop out. He felt it was suicide,” Sims said.

That summer, Sims and Dennis worked their way through a bucket list of day trips close to home before travel became too burdensome and painful for her. After seeing his wife struggle with pain and discomfort on those trips, Dennis finally accepted his wife’s decision.

“All of the sudden in the car he said, ‘I understand.’ I was sort of shocked into silence and had to ask him to repeat what he meant. He said, ‘I understand why you want to do it now,’ so now he understands and is supportive. All my friends have been supportive. I’ve had some family members … tell me that it’s basically suicide and I should wait for God’s timing to take me, and I’ve said, ‘You want me to suffer?’  … It’s not just the communication. It’s when the pain reaches a certain point where I won’t want to carry on with it anymore.”

A conversation with the patient

Ultimately, control over when, where and how she dies remains firmly in Sims’ hands. When she reaches the point where she knows she simply can’t carry on, she will call her MAiD practitioner and they will be ready to carry out the final stage of her journey within 48 hours. Even on the day of her planned death, Sims has the right to back out of the process until that point of no return when the medications are administered.

According to Green, a patient and their practitioner have that conversation about how the medically assisted death will be carried out as soon as it is approved.

“It’s a conversation with the patient about what’s meaningful to you. What would be a meaningful event for you? Who do you want there? The word that we tend to use … is choreograph. We choreograph their event,” Green said. “Do they want music? Do they want people there? Do they not want any of those things? Do they want a spiritual guide? Do they want prayer? Basically, anything we can accommodate, we will. Any sort of ceremony or ritual that they wish, we can do.”

For Sims, she will be surrounded by her friends when she decides to go.

“And they’ll be there to support (my husband) Dennis. … I plan to have friends and bubbly and music – all the things that I love,” Sims said. “You have to explore your soul and be at peace with yourself first (before considering MAiD). You can’t put too much purchase in what other people say because those that love you and understand what you’re going through should support you. … Don’t be afraid of the process. … You’re in the driver’s seat. Nobody is pushing you as to the time. It’s totally up to you.

“You are making the choice and it’s your last act of independence.”

According to the most recent data published by Statistics Canada, there were 12,689 written requests for MAiD in 2021,  a 31 per cent jump from 2020. These requests resulted in 10,029 medically assisted deaths in Canada in 2021, an increase of 34.7 per cent from the year before. MAiD accounted for 3.3 per cent of all deaths in Canada in 2021, up from 2.4 per cent of all reported deaths in the previous year. In 2021, slightly more than half of those receiving MAiD were men, and the small percentage difference between men and women had not changed significantly since 2020.

Complete Article ↪HERE↩!

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Does Someone Know When They’re About To Die?

By Jennifer Anandanayagam

Death is an uncomfortable topic for most of us but it is also one of the few universal experiences everyone will have. Scientists and doctors have long been investigating what happens to someone as they slowly slip away from this world, and while we don’t have all the answers, there are a few physical and behavioral changes you might be able to observe in someone who’s dying.

The person’s level of activity and movements might decrease significantly, noted the Hospice Foundation of America. They might spend most of their time sleeping. You might also observe that they’ve detached from what’s going on around them — interests, conversations, etc. They may also experience a loss of appetite and mental confusion. Physically speaking, someone who’s dying will experience a slowing down of their breathing and a drop in their blood pressure, per Everyday Health. “The fingers may get cold or turn blue. If you feel the pulse, it will be weak, then they start to develop an irregular type of breathing, and that’s a sign that things are pretty ominous,” added the medical director of the Hebrew Home at Riverdale in New York, Dr. Zachary Palace. A person in the last stages of life may also lose control of their bodily functions like urinating and defecating.

While these are the changes you’ll see in someone who’s close to death, what about them? Do they know they’re dying? According to certified hospice nurse Penny Smith, who goes by the name Hospice Nurse Penny on YouTube, they do, mainly because of what most people say before they die.

Dying people talk of having to ‘go away’

Penny Smith, who’spassionate about end-of-life advocacy and normalization of death, thinks that people who are close to death sometimes tell us that their time on earth has come to an end. “They might say, in no uncertain terms, ‘I’m dying soon,’ but often they tell us in metaphors,” she added.

They might say things like, “‘I need to pack my things,’ ‘I’m getting ready to leave,’ ‘I’m going on a trip,’ ‘I want to go home,’ or even just, ‘I’m tired,'” shared Smith. For the loved ones who are watching the process, it’s a matter of leaning into and listening to what they’re saying. By following their cues, you’ll really have the chance to say goodbye and express your feelings before they no longer understand, explained the hospice nurse.

People on their deathbeds are often concerned with mending relationships, navigating regrets, and spending time with loved ones. In fact, according to Fellow of the American Academy of Hospice and Palliative Medicine, palliative care physician, and author, Dr. Ira Byock, the words, “Please forgive me,” “I forgive you,” “Thank you,” and “I love you,” become even more meaningful when death is near. As a loved one who’s close to someone nearing their end, facilitating these important conversations could be the biggest gift you can give them.

Someone near death may feel peace

According to a 2014 study published in Resuscitation, people close to death sense being separated from their bodies and feel peaceful. The research involved interviewing 140 cardiac arrest survivors with near death experiences from the U.S., U.K., and Austria.

Neuroanatomist and author of the book, “My Stroke of Insight,” Dr. Jill Bolte Taylor, who experienced a sense of bliss when she had a stroke, per Forbes, thinks her euphoric sensations when close to death may have had to do with what part of your brain dies first. The left brain is often credited with all that’s logical, mathematical, and factual in our thinking, while the right brain is where creativity, imagination, and feelings thrive (via Healthline). Dr. Taylor thinks that when we’re close to death, it’s the right side of our brain that endures.

“When we’re on our deathbed, the left brain begins to dissipate. We shift out of all the accumulation and the external world because it’s no longer valuable. What is valuable is who we are as human beings and what we did with our lives to help others,” she told Forbes. Perhaps this is another explanation as to why someone who is about to die is concerned with mending relationships. Even if we don’t have all the answers about what people see and hear before they die, we do know that they want to spend their last moments in peace and love. Maybe this will help us do the best we can to make the experience of their passing meaningful for them.

Complete Article ↪HERE↩!

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It’s Never Too Soon to Start End-of-Life Conversations

— Patients can make their preferences known away from the pressures of acute illness

By Fred Pelzman, MD

There are the things that matter, and then there are the things that really matter.

As I’ve often written, through the course of a primary care office visit, and over the course of a long-term relationship between a patient and their primary care doctor, there are so many things we need to attend to.

So many acute issues, so many chronic medical problems, so many unmet health needs, so many social determinants of health that our patients struggle with, the massive issues of mental health, and the healthcare inequities and disparities that exist across the spectrum of our society.

I’ve written before about how much time it would take to take care of everything — to go through all the patient’s issues, all the vaccines and other healthcare maintenance items, all the screenings mandated by insurance companies, and all the questionnaires that bombard our patients (and us) from before their visit even starts through the time they leave the practice.

But of course, there are often things that get left unsaid, unattended to, or put off for another day.

Apart from the moment a decision is finally required, we oftentimes put off end-of-life discussions and other issues surrounding these complicated topics.

Things like signing a healthcare proxyopens in a new tab or window, having a discussion with their family about what they would want done at their end-of-lifeopens in a new tab or window, whether they want to donateopens in a new tab or window their organs, whether they want an autopsy when they pass.

Each of these topics could take a day, a week, a month, a year, a lifetime.

Patients’ ideas about each of these things change over time, change with their circumstances, change in the moment.

What we think we want when we’re young and healthy and seemingly immortal sometimes changes in the heat of a critical moment, a catastrophic illness, a tipping point, a time to decide.

How many times have each of us had a patient who got to this point and both doctors and the patient’s family wished we’d had more time to talk to them to understand what their loved one really wanted.

As part of my initial visit with patients, I tell them I’m there to be an advocate for their health, to help them navigate through our incredibly challenging healthcare system, and to try and be there for them as much as I can.

Our practice used to hand out paper copies of the New York State healthcare proxy and living wills forms.

But somewhere along the line — perhaps due to the cost of printing all those paper forms — the hospital decided we wouldn’t be doing that anymore.

Now when I meet a new patient, I send them a link to those forms in the electronic after-visit summary once we’ve wrapped up for the day, and they can print them out at home. I am hopeful the forms will help them make these decisions in a calm manner, away from the pressures of an acute illness, talking it all over with those that matter most in their lives.

Whenever time allows, I tell my patients — from the youngest to the oldest, the incredibly healthy to the terribly sick — that I have these conversations with everybody, that everyone should make their family and other loved ones know what they would want done in these difficult situations.

I know there is a lot of debate about how much this can change, how the decision to do nothing and pass peacefully can be interrupted by a critical illness when maybe, just maybe, if we only do just a little more, just a few more days, then things might turn around.

But for all of us this is a good place to start: to find out what a patient’s wishes are, to help make things easier for them, for the team of healthcare providers taking care of them, and for everyone who’s close to them who will ultimately be so deeply affected by what happens next.

Perhaps someday we’ll be a mature enough society where, instead of having to convince someone to be an organ donor, the default would be to donate any of our viable organs for the benefit of others (like it is for much of the rest of the world).

Perhaps someday we can use the idea of an autopsy to help advance medical knowledge, to help understand the process of living and dying, to help the next person in line who might benefit from what we learn.

And maybe even someday the issues of a dignified death, of maximizing the use of hospice and palliative care, of helping our loved ones get the peace they desire, will no longer raise such societal ire and create so much resistance.

I know this is a lot, I know that each of these topics comes with an enormous amount of charged societal and emotional baggage, and there are strong opinions on all sides.

For now, I’ll keep telling my patients to think about it, to think about how they’d feel, how they want their family to feel, how much better it will be if everyone is on the same page.

Far too often we’ve seen families torn apart by these decisions during the last days of a patient’s life. And none of us want to see that happen.

Complete Article ↪HERE↩!

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Can Reimagined Hospice Combine Medical Care With Support In Dying?

By Howard Gleckman

After a half-century as a Medicare benefit, hospice care still has had only limited success in improving the quality of patients’ lives as they approach their deaths. While more people are enrolling in hospice (about 1.7 million in 2020), they often do so only days before dying. Thus, they fail to benefit from the best of what hospice has to offer.

As a result, there is increasing interest in new end-of-life care models. One would provide concurrent care that would combine some ongoing treatment for a patent’s underlying disease with end-of-life support. The idea: Encourage more—and quicker—hospice enrollment among those who often reject the benefit because they are “not ready to give up.”

Today, half of hospice patients are enrolled for 18 days or less and one-quarter receive the benefit for fewer than five days.

Medicare pays hospice providers a fixed amount for their obligation to offer full patient care to their enrollees. For example, this year it pays a daily rate of $211 for the first 60 days of routine care and $167-a-day after that.

Benefit Constraints

The hospice benefit comes with two significant constraints. The first: While Medicare pays for all hospice care, including treatment to manage pain and other symptoms, it does not pay for treatment, such as chemotherapy, aimed at curing the patient’s underlying disease.

The second requires a physician to certify that a patient is likely to die within six months of admission to hospice care. Both made sense in the 1980s. Those cancer patients typically enrolled in hospice after they exhausted all treatment aimed at curing their disease. And it was relatively easy for doctors to predict their life expectancy.

These two limitations may have controlled Medicare costs but they discouraged people from enrolling in hospice. Imagine having to sign a form acknowledging you are likely to die in six months or less.

An Alternative

But that may be changing. In one demonstration program, called the Medicare Care Choices Model, participants were more likely to enroll in hospice, receive better quality end-of-life care, and save Medicare money by stopping costly, but ultimately futile, treatment.

However, the program was limited to people with certain diseases, and many operators eventually dropped out.

A recent article in JAMA (paywall) by Natalie C. Ernecoff and Rebecca Anhang Price of the RAND Corporation describes how the new model could work for someone on dialysis to manage kidney failure.

Today, once a patient enrolls in traditional hospice, Medicare stops paying for dialysis. As a result, few kidney failure patients enroll. In a concurrent care model, Medicare would continue to pay for dialysis. But patients might begin to reduce the frequency and eventually stop as they receive more social and spiritual supports.

In some ways, these models look like palliative care that combines comfort care with standard treatment for serious illness. But it would be different in at least one crucial way: Because hospice could not be expected to pay for high-cost treatments, Medicare would have to fund a patient’s care through two payment streams. One for traditional medical care, the other for hospice’s social supports and its very different form of health care.

Challenges

The problem: How to combine a hospice’s nurse-social worker-chaplain model with often-complex medical treatment in the US’s fragmented, poorly coordinated health care system.

At the same time, finding ways to sufficiently pay for this complex care while preventing abuse by unscrupulous providers will be difficult. While many patients fail to benefit from hospice because they enroll too late, some hospice operators have gamed the system by enrolling patients who are not terminally ill. In effect, they collect Medicare’s daily payment without providing any care.

Finally, while large hospices may have the capacity to manage a complex alternative payment model with medical partners, small non-profits will struggle. Currently, of 5,000 hospices, about three-quarters are for-profits.

The World Has Changed

No doubt, something has to change. Until now, Medicare has been paying for hospice based on a model that was designed in the 1980s. Back in the day, the benefit was developed to provide end-of-life care for people with terminal cancer, who typically faced a month or two of serious functional decline before dying.

Major advancements in medical technology, changes in the health conditions of older adults, and a fundamental restructuring of the business of health care have created a very different end-of-life environment from a half century ago. In 2019, for example, about 20 percent of hospice patients had a principal diagnosis of dementia, compared with just 7.5 percent with cancer.

The other big change: Hospice was designed as part of traditional fee-for-service Medicare. But now, more than half of Medicare beneficiaries are enrolled in Medicare Advantage managed care plans that also receive a fixed monthly payment for each member they enroll.

Some observers worry about unintended consequences of a concurrent care model. For example, Brown University’s Joan Teno worries (see here) that a poorly designed concurrent care model could encourage some providers to stop treating patients who could benefit from curative care.

She’s right. The design will be critical. But today, the Medicare payment system is discouraging people who are dying from enrolling in hospice. That needs to change.

Complete Article ↪HERE↩!

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Do end-of-life conversations make you nervous?

by Chris Brinneman, MSW, LCSW

If your family is like mine, you enjoy coming together to talk about living your best lives, planning vacations and making sure you are incorporating the activities and people you love into your calendar. But my family, perhaps unlike your family, also appreciates opportunities to discuss plans and preferences pertaining to potential health issues and scenarios, what we want our final days to look like, death and dying. We recognize that particularly given my profession, this might make us the exception to the norm. But it doesn’t have to be.

If you’ve seen the new Barbie movie, you can appreciate that I often feel like most people are the supporting characters in that film–dancing and having a great time–and I’m the one asking, “Do you guys ever think about dying?” It can certainly cause the record to scratch and the music to stop.

I’m incredibly grateful for my family’s willingness to engage in crucial conversations. After years serving and observing as a hospice and palliative care social worker, I boldly support not waiting until it’s too late to start talking about advance care planning (ACP) and end-of-life planning. I recommend inviting the people who matter most to us to have these discussions so that we know how to advocate for them in the event of a medical crisis and they know how to do so for us. Is it as light and lovely as vacation planning? Probably not. But it is one of the greatest gifts we can give to the people we care about.

Making ACP approachable

We live in a society where people predominantly avoid the subjects of aging and death. This can make it very challenging to broach the subject of end-of-life preferences. But I tell people to start by simply opening the door, metaphorically and physically, and inviting people in to chat. This could be on your own or with the help of an ACP advocate. The important thing is just to start, because these conversations evolve over time and are best when revisited as circumstances and expectations change.

My mom used to tease, with some underpinnings of truth, that her end-of-life plan was for us to “put her on an iceberg with a polar bear.” She grew up in a home where talking about death and dying was not the norm, as their faith did not accept the reality of death. As she got older, and three of her five adult children worked in healthcare, Mom became more willing to engage in ACP discussions sans the polar bear. A big motivator for this shift was that we, as a family, began to normalize talking about sickness, dying and death. We invited her to have conversations, and over time, she was able to clearly identify the person she wanted to make healthcare decisions for her if she could not make her own and state what her treatment preferences were for future care.

Setting the stage and starting the dialogue

You, too, should begin the conversation about advance care planning with your family and friends. If that makes you anxious or triggers you to feel overwhelmed, I want to offer some suggestions for broaching the subject from a different place.

Here are some ways you can start a crucial conversation in a format that feels good for you and your family:

  • Tee up the discussion in a neutral way. You don’t have to say, “Let’s have a difficult conversation and talk about your death.” These discussions should never be framed in a negative way. Rather, try beginning a dialogue with loved ones from the truth that completing ACP early allows you (and them) to think about and reflect on what is important when health changes, even though that may be years away.
  • Set the stage or take advantage of the situation. There are times when talking about death and dying fits seamlessly into a conversation or event. For example, if you learn of a sudden medical crisis with an acquaintance or friend, use the news to spark a discussion about what you would want in a similar situation. Similarly, there are settings and scenarios that support this type of intimate conversation. When walking and talking with a loved one, for instance, you can use the dedicated private time together to communicate about your wishes.
  • Dose these conversations out over time. You don’t have to tackle the entirety of your end-of-life wishes in one sitting or conversation. Talk a bit. If you start to feel overwhelmed or like you’ve made progress, leave it. Talk again when you’re ready.  
  • Emphasize key messages. ACP is good for all adults, regardless of age or health. We have a say in our care. Treatments only work if they work for us, each individually. We can change our minds. But it’s always imperative that you make the things that are most important to you known, so that the people who will be making decisions for you can be your voice. 
  • Lighten the emotional weight of the subject matter. If you struggle with the topic of end-of-life, as many do, there are games available to help guide the dialogue with a brighter approach. The Death Deck, Hello and Morbid Curiosity are great options. There are websites that offer resources like The Conversation Project Starter Kit.

I’ll leave you with this. Last year, I dropped my car off at the dealership to have some work done. The driver of the shuttle who took me to work asked what I did for a living, and I explained my work in advance care planning. By the time we concluded our short commute together, he had my card, and I had his promise that he would speak with his wife and call to schedule an appointment. He did. And you can, too.

Invite the people you love to have the dialogue–as many times as it takes. Be open to the gifts and relief these conversations can bring. Use the resources you need to ease any apprehension. And appreciate the opportunity to make your wishes known, because, unlike in Barbie’s world, we all think about death. We just need to normalize talking about it.

Complete Article ↪HERE↩!

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The Intersections Between Hospice and Palliative Care

By Holly Vossel

Hospice care and palliative care services have similar, but diverging, threads across the care continuum.

An area of increasing overlap centers around patient consultations discussing symptom management and goals of care.

Supportive care for patients and families is a common thread in both hospice and palliative care, with providers touching different points along a patients’ disease trajectory, according to Brynn Bowman, CEO of the Center to Advance Palliative Care (CAPC). The organization recently held a conference with the Coalition to Transform Advanced Care (C-TAC).

Palliative care and hospice share some common goals with hospice. Both aim to manage pain and symptoms for patients in critical health stages, she said. Ensuring that patients receive the right form of care at the right time is crucial Bowman indicated.

“Many leaders in the hospice and palliative care fields want the same thing for patients in that philosophical approach to care,” Bowman told Hospice News during the C-TAC-CAPC Leadership Summit in Washington, D.C. “The question is, how do we appropriately make sure that as soon as a person needs supportive palliative services, that they have the right access at the right time and the transition to hospice as it continues to evolve is appropriate.”

Hospices have increasingly built out palliative care as an additional business line, a trend that continues to accelerate.

More than half (56%) of hospice care professionals indicated that their organizations planned to launch palliative care programs during 2023 in this year’s Hospice News Industry Outlook Survey, prepared in collaboration with Homecare Homebase. This is up from last year’s results in which 52% of respondents reported the same. Survey respondents included nearly 330 hospice and palliative care industry professionals, including owners, executive leaders and managers, among others

Hospices seeking to reach patients further upstream could benefit from integrating a palliative consultative model into their works, according to Allison Silvers, chief health care transformation officer at CAPC.

“Hospice is a model with a definition of what gets delivered, how often and by whom,” Silvers told Hospice News at the summit. “One opportunity that could be better utilized is a consultative model, but it is a divergence for a consult. Hospice is a symptoms management model, but there’s also a delineating line there, particularly in the requirement to give up curative treatment. And that doesn’t fit a lot of patients and families’ beliefs. There’s opportunities to get rid of the ‘giving up’ component in palliative care where patients can be much better served.”

A headwind hospices often face in their growing palliative lines is a lack of awareness around the nature of these services among the general public and health professionals alike. Common issues are that medical and nursing students do not receive enough exposure to palliative care throughout their training, while patients, families and clinicians often conflate these services with hospice.

More research and education are needed to help fill these knowledge gaps and improve understanding of both hospice and palliative care and how they differ, said Dr. Andy Esch, palliative care specialist and CAPC’s senior education advisor.

Better understanding could foster improved care coordination between hospice and palliative care, helping providers to address unmet patient needs, he stated.

“Through education, awareness and research, we need to make it automatic for anybody interfacing with a patient to recognize suffering or an unmet need and figure out where to refer them and think about giving them palliative care,” Esch said at the summit. “The job is always making sure patients get the right services they need, and when someone is eligible for hospice, there’s a benefit in that program. And if they don’t qualify, they still deserve to have their symptoms managed, their care coordinated and their spiritual and psychological needs met. We need to make people more aware, and we need research to support the outcomes before it becomes more automatic.”

Complete Article ↪HERE↩!