A Guide to Dying

— We Talked to 3 Death Doulas

As Halloween, Day of the Dead, and All Souls and Saints Day have passed, we reflect on death and the afterlife. In fact, it’s all consuming. It’s impossible to not think of our loved ones we have lost or those we may lose when visiting grave sites or setting up an altar with candles.

Whether religion comes into the conversation or not, death is a complex topic to discuss. The dying process is a mystery for most people, and shielding away from “the end” is an uncomfortable reality that many aren’t ready to face. Oftentimes, most people ignore it alltogether.

Avoidance, however, doesn’t always work when it comes to the inevitable — preparing for one’s departure from the world. And sometimes, people just need a little help, guidance, and comfort to ease into this next transition.

That’s why having a death doula assist during the latter stages of life is increasingly becoming a popular business and option for those heading toward the light.

A “doula” is a term commonly employed to describe someone who supports a pregnant woman during childbirth. The name is derived from the Greek word “doulđ,” which means “slave or female servant.” More recently, the definition of a doula has been expanded beyond the introduction to life and includes someone who provides support to those who are nearing the end of their lives.

What does a death doula do?

The tasks performed by death doulas can change depending on the needs of the person they are currently assisting. A death doula may concentrate on performing menial duties so that others who are close to the dying person can concentrate on spending meaningful time with them. They may assist with funeral rites and ceremonies, such as ensuring that the proper cultural or religious customs are observed during the dying process and that the deceased’s body is appropriately handled after death.

Listening to the dying person and others close to them while providing nonjudgmental emotional and spiritual support can be a significant portion of the death doula’s job description.

To learn more about this compassionate role, we asked three death doulas about their difficult but rewarding profession.

Interview questions have been edited for length.

Alysha Suryah, Baltimore

Photo by Elizabeth Kopylova

Q: What kind of training goes into being a death doula?

A: While end-of-life doulas have been around for years, the process for entering this space as a professional is somewhat unregulated. There are a plethora of opportunities to get out in the community to receive training in specialized topics, like rituals and communication, as well as the business side of this role; however, certifications are not required to provide this level of care to clients or even within your community — there are even opportunities to be a volunteer doula at hospice centers or other related organizations.

The only thing needed to be a doula is a willingness to provide compassionate care and a deep commitment to supporting individuals and their families during this potentially life-changing journey. It’s really a role rooted in humanity, and while formal training and certifications can certainly enhance your skills, the essence of being a death doula is the unwavering dedication to being there for others when they need it most.

Q: What are some of the challenges of the job?

A: One of the primary challenges of this role is the emotional toll it can take, even if one is vigilant about protecting their emotional well-being. Death is an intensely personal experience for everyone, and as an end-of-life doula, you have the potential to build deep, meaningful relationships with the individuals you serve. Bearing witness to their grief, pain, and loss, as well as the grief of their families following their passing, can be emotionally taxing at times. Sometimes, the relationships formed with clients are so close that you find yourself sharing in their sense of loss. It necessitates practitioners to have a considerable amount of mental fortitude to provide unwaveringly compassionate care consistently.

In addition to the emotional challenges, end-of-life doulas also encounter practical challenges. Effective communication, including facilitating difficult conversations, is a key aspect of the role. Irregular hours, often involving evenings and weekends, demand flexibility. Additionally, managing multiple clients simultaneously can increase the risk of burnout, emphasizing the need for self-care and support. Balancing the emotional demands and the practical challenges of the role, end-of-life doulas exemplify resilience in their commitment to providing support while navigating the complexities of end-of-life journeys.

Q: Is a death doula brought into hospice, or is it home care?

A: The professional role of a death doula is remarkably diverse, shaped by an individual’s strengths, experiences, interests, and the specific needs of their community. Death doulas can be found in both hospice and home care settings, and their responsibilities closely align.

In hospice settings, death doulas collaborate closely with hospice teams to provide comprehensive support to patients and their families. Their mission typically involves offering emotional support and guidance, contributing to legacy projects, and assisting individuals throughout the end-of-life journey. Their role seamlessly integrates within the hospice care framework. Conversely, some death doulas choose to operate within the context of home care. In this capacity, they provide support to individuals who have decided to receive end-of-life care in the comfort of their homes. Within this environment, death doulas can have a higher degree of flexibility compared to the structured relationships found in hospice settings. Their services encompass companionship, emotional and/or practical support, as well as guidance and education on end-of-life decisions. They also continue to provide support to clients’ families, guiding them through the dying process in a familiar environment.

Catherine Durkin Robinson, Chicago

Photo courtesy of Catherine Durkin Robinson

Q: What led you to become a death doula?

A: I’ve been doing death doula work for a long time. Raised Irish Catholic, I was at my first “Last Rites” when I was five, and thought everyone was raised to believe that death is a natural part of life. I was much older when I realized that most of my friends were shielded from death and quite frightened by it. So I’d been their “death buddy” for years. I was also a longtime volunteer for two hospice organizations. It was around the time of the pandemic when I realized my 30-year career as a political organizer was coming to an end. I wanted to continue advocating for people outside the political system (it’s gotten quite toxic out there.) Someone said that I was already doing this work, so I went back to school (University of Vermont) and opened up my practice.

Q: What are some of the biggest challenges in your line of work?

A: I think one of my biggest challenges is helping people to see death in a different light. We can be awed by its mystery rather than frightened by it. Another challenge is helping people understand that plant medicine, or psychedelics, can reduce anxiety and fear around end-of-life. People are afraid of that idea, too. So, I’m pioneering in this space and need to remember that and be patient as I go.

Q: I’m interested in your experience in the polyamorous space. Can you discuss this?

A: Yes, there are lots of challenges about the end of life for different families. This is especially true for non-traditional families, like polyamorous or anyone on the LGBTQ+ spectrum. As someone with training and lived experience in this realm, I’m happy to advocate for families and help healthcare providers to better support them when needed.

Laura Lyster-Mensh, Washington D.C.

Photo by Isabella Carr

Q: How long have you been assisting others as a death doula?

A: I have always been interested in the processes of birth and death. At my stage of life, there is more death, and I wanted to explore how to be a better caregiver, supporter, and mourner.

I started my training in late 2021 and have been volunteering with dying people and doing death awareness work since early 2022.

Q: How has becoming a death doula changed your perspective on death and dying?

A: I’m less afraid of dying. I am able now to separate dying from death, and that is quite helpful.

Q: Can you tell me about the death positivity programming at the Congressional Cemetery, where you are a death doula?

A: Congressional Cemetery is taking a bold and active stance on this programming. Despite a very busy calendar with so many activities going on, they make space for these special events and gatherings. It’s innovative, and the community of death-positive participants is growing and supporting one another. It’s an honor to be facilitating these programs.

People stop me, often, when I’m walking around the cemetery and say, “Aren’t you the death doula?” These are the start of some of the most interesting and enriching conversations I’ve ever had. It is amazing how much people want to talk but don’t know where to start.

Professional Care Management. End-of-Life Doulas.

Complete Article ↪HERE↩!

November 9, 2023November 8, 2023

As a death doula and professor who teaches about dying, I see a need for more conversations about death

Students in a death and dying class have the opportunity to become a ‘death ambassador,’ in recognition of their new level of awareness that could help foster healthy conversations about death and dying.

By Susan Srigley

A growing number of folks may have heard of the death-positive movement, death cafés or death-friendly communities — each of which are animated by the understanding that welcoming our own mortality could improve the quality of our lives.

There is truth to these claims. Both as a person who has taught courses on death, dying, and spirituality for more than 20 years, and as a death doula, thinking about dying and working closely with the dying has fostered in me a deep appreciation for what it means to live well and meaningfully.

However, my university students have often told a different story. Both informally in class discussions, and also in a public presentation about why death education matters, for the online Lifting The Lid International Festival of Death and Dying, many have expressed how their learning with me signals their first times talking about death.

When I hear this, I am aware of how our society needs to do a better job at nurturing more conversations about death, and building communities that support people navigating questions surrounding death and dying.

Denying death

The easiest way to exile death from our conversations is to label it “morbid,” ensuring we never need speak of it.

My first lecture in every death class begins with a discussion of the pervasiveness of death denial in dominant modern western culture.

I ask my students: “How do people react when you tell them you’re taking a course on death?” Invariably they have heard things like:

“That’s so morbid!”

“How depressing/dark/strange/weird!”

“Why would you want to study that!?”

My courses are designed to introduce students to the study of death through history, culture, religion and spirituality, ritual, literature, ethics and social justice

We explore social and cultural barriers affecting how services are structured and the implications for end-of-life care. For example, racism and inequities in health care and other institutions contributes to dangerous disparities in treatment and life outcomes, influencing Black, Indigenous and racialized communities’ collective trauma surrounding dying and death.

Students read and learn about how humans have understood and interpreted death, as well as some of the pressing social issues that we face in contemporary death care and practices.

Inspired by the work of Dr. Naheed Dosani, palliative care physician and health justice activist, I now include a class on palliative care for people experiencing homelessness and dying in the streets.

Anishinaabe death doula Chrystal Toop, a Member of Pikwàkanagàn First Nation, also visits my class to speak about compounded trauma of death and collective grief experienced by Indigenous Peoples, and why she created her own Indigenous death doula training to reclaim cultural teachings.

I also bring what I have learned as an end-of-life companion from hours sitting with and listening to people who are facing their own death or the death of those they love.

The gentle skills learned there are discernment, attention and compassion. As students reflect on what they will take with them from the course, they perceive the value in this kind of experience I bring to the classroom as much as in an article on palliative care and its history.

Negative consequences of denying death

My courses on dying and death have always drawn students from other humanities programs like English, fine arts and history. But over the years, more students from the professional programs, such as nursing, criminal justice and social work are enrolling.

While students’ professional programs — for example, in nursing or social work — seek to address various topics surrounding aging, trauma, death or end-of-life care in varying ways, students also need opportunities to think about their own mortality and, to cultivate some self-awareness in order to be present for others experiencing death and dying.

Some of my nursing students raise questions like: How do they talk to the loved ones of patients who are dying? What should they say?

These questions are hard enough when death is expected. They are exceptionally difficult when it isn’t, when the death is of a young person, a child or a baby.

New level of awareness

Students also express their disappointment and confusion because what they face in the aftermath of death and loss is often isolation and solitude.

While research about how to support children and young people navigating death amplifies the need for open and sensitive discussion, some students, especially white, middle-class students, speak of experiences of having been shielded from death by those who thought shielding them was the best way to protect them from fear and anxiety.

Simply providing the safe space to begin to have these conversations goes a very long way towards assuaging their fear and grief.

In part this is because supporting the passage of life to death, and supporting grief, is (or should be) a collective experience.

Community death care is everyone’s business, and while awareness of our own mortality is an important part of that, awareness and activism around racism, violence and injustice in end-of-life care is essential.

Death ambassadors

Figures like Dosani are making social media outreach part of their teaching and care practices. In recognition of the importance of creating death supportive communities, I also started an Instagram account, @death.ambassadors, to chronicle my death teaching.

At the end of each death course, I offer students the opportunity to be a “death ambassador,” in recognition of their new level of death awareness that could help to foster healthy conversations about death and dying in our culture.

Some of my students have also created their own death-awareness social media accounts, and found themselves supported by a death-positive community of educators, end-of-life companions, funeral directors and death doulas.

It is a universal truth that one day we are all going to die and that means we all have a serious stake in death education.

When it’s your turn, or the turn of someone you love, don’t we all need people who have considered how to support us in navigating dying and death? Let’s do the work to make that a reality for everyone.

Complete Article ↪HERE↩!

November 7, 2023November 6, 2023

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↩!

November 5, 2023November 4, 2023

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↩!

November 4, 2023November 3, 2023

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↩!

November 1, 2023October 31, 2023

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↩!

October 31, 2023October 30, 2023

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↩!