Category: Talking about death

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Dying and Other Stuff

— A Practical Perspective on Good Deaths

Death is considered taboo in the Western world and many other cultures. With the world’s population aging rapidly, we cannot afford to turn a blind eye toward the process of dying. We owe it to ourselves and our loved ones to advocate for the tools, knowledge and spaces necessary to prepare for a good death.

By Ranjani Iyer Mohanty

At the age of 87, my father passed away from cancer in Calgary, Canada. He had multiple myeloma, an illness that made his bones very fragile. He was bedridden for the last nine months of his life. Instead of hospice, he wanted to spend his remaining time at home for several reasons. We could be with him 24/7; he could be in familiar surroundings, eat his favorite foods and watch his favorite shows; and we could retain control over his care and manage it according to his wishes.

My mother, sister and I supported his decision. My 80-year-old mother managed the home and cooking. I scheduled appointments and managed his day-to-day care. Since this was during the COVID pandemic, my sister could work from home and would pop up between meetings to feed him. My sister and I would alternate doing night duty. It was the best of times; it was the worst of times. It brought us all closer; it was frightening and exhausting.

In the final days, I felt myself woefully unprepared to guide a loved one through this inevitable journey in a gentle and reassuring manner. I wondered why our society and culture do not offer us more support. Death needs to be made into a less traumatic and more normalized process.

We are woefully underprepared…

Globally, the population is aging; the number of people over 80 is expected to increase dramatically from 137 million in 2017 to 909 million by 2100. In Canada, more than 20% of the population is over the age of 65. In the US, that number is approaching 18%.

Some 61 million people the world over died in 2023. That number is expected to reach 120 million annually by the end of this century. The upcoming decades will see the steepest rise in the number of annual deaths in possibly all of our human history. Death should be an important public health topic — both globally and nationally.&

For the experience of birth, there is an abundance of support and enthusiasm. There are informational books like the classics What to Expect When You’re Expecting and Pregnancy, Childbirth, and the Newborn and Ina May’s Guide to Childbirth. More are published each year. Prenatal classes are found in numerous hospitals and community centers. Some stores cater specifically to new parents, offering necessary as well as cute items. There are celebrations like baby showers. Grandmothers and mothers and aunts and sisters and friends share their excitement, wisdom and help. There are hospitals and obstetricians. And there are doulas and midwives.

For the experience of death, we are sad, frightened and alone. There’s not enough support, even though experiencing death — either others’ or even our own — is as much a part of our existence as birth. In fact, one could argue that death is the more universal experience. Yes, we’re all born, but we don’t even remember it later. In contrast, many of us are even conscious and coherent in our final days before death. Apparently, just before he died, Oscar Wilde had the wherewithal to say, “Either that wallpaper goes or I do.” While not all of us give birth, we all die. We need to be better prepared for death.

…but we don’t have to be

We don’t do too badly in terms of books on the subject of death. While there’s not yet a What to Expect When You’re Dying, there are several excellent books on the practical aspects of death: Atul Gawande’s Being Mortal; Sherwin Nuland’s How We Die; Margaret Rice’s A Good Death; Katy Butler’s The Art of Dying Well; and Sallie Tisdale’s Advice for Future Corpses. Such books can help to introduce, inform and normalize the concept. They can help us see death not just as something to avoid, but as something to prepare for.

There are no classes on how to die well, but there could be. Just like how we have prenatal classes, we could offer pre-death — or to be parallelly Latin, “premortem” — classes, for anyone experiencing death. Premortem classes would be taken when we know death is impending, or even beforehand to motivate us to make the most of our remaining time. To make them accessible, these classes could be offered in hospitals and community centers just like prenatal classes.

True, death means the loss of a person instead of a gain. But isn’t that even more of a reason to have a celebration before dying, to appreciate what is precious while we still have it? There is rarely a pre-death celebration, particularly in the West. End-of-life celebrations can bring the dying and their loved ones together to reminisce, reaffirm and say goodbye. In some communities in South India, the 60th and the 80th birthdays have long been celebrated with special fanfare. There is a puja (prayer) for the guest of honor, followed by a feast and party attended by a large number of family and friends. The Western world is now thinking of “living funerals” — or the happier term, “celebrations of life.” Perhaps we should embrace them wholeheartedly.

Preparation for death could also involve a bit of a shopping-and-social experience. There are already “Death Cafés” where people meet in a café to talk about death. There is potential to expand this to a full-time, accessible space with books on philosophy, faith, how to have a good death and how to guide loved ones through the process. There could be support group meetings for the dying as well as their companions. Conversation groups on a variety of death-related topics and lectures from experts could offer those premortem classes. Given the growing demand foreseen over the course of this century, this has the scope to develop into a purposeful space for preparing for death.

Professional care shouldn’t end at the hospital

While bookstores and cafes can offer space to talk about death, there is still a demand for experts to coach us through the process. There are palliative care doctors, but only in cases of incurable diseases and not for cases of regular deaths. Hospices are few in number and are only open to those with a terminal illness and a prognosis of less than six months. As a society, we need to consider and plan spaces where people — especially those who are alone — can die in comfort and with easy access to professional expert care.

Over the past 20-some years in the US, the percentage of deaths at hospitals has decreased from 48% to 35.1%. The percentage of deaths at home has increased from 22.7% to 31.4%. In a 2013 survey in Canada, 75% said they would prefer to die at home. Governments too prefer to have us pass away at home, as it lessens the burden on nations’ hospitals and healthcare systems. Passing away at home may be what most of us want — in a familiar place, surrounded by our memories and family. How nice it would be if we could also have a death expert on hand. Just as we have a midwife to assist us in the birthing process, we could have a midwife to help us in the dying process. Surprisingly, such people exist.

A death midwife or doula is simply defined as a person who assists in the dying process. There are already death midwife associations in several countries (e.g., Canada, US, UK), such as the International End-of-Life Doula Association (INELDA). Death midwives can perform a variety of services. Many provide information and logistical assistance, such as death planning and funeral planning.

I envision a broader and more intimate role. I see a death midwife as similar to a birth midwife, someone who is very hands-on and who has a link with a doctor. A comforting, compassionate and yet objective presence who has helped many die well. It would involve assisting with physical as well as emotional end-of-life care. Just as the birth midwife helps both the mother and the child, I see the death midwife as helping both the dying and their companions. Death midwives can give guidance in accordance with the wishes of the family and, most importantly, in accordance with the wishes of the dying. They can hold our hand till the gate.

We owe it to ourselves

Given the unprecedented numbers that will be dying in the coming decades, it would be wise for societies at large to treat death as a public health issue. And given that none of us is likely to escape death, it behooves us individually to advocate for support systems – such as informative literature, preparatory classes, conversation groups, dedicated products and spaces, and accessible death experts and midwives. A good death may well be possible if we prepare to evolve in such a manner. We owe it to our parents, ourselves and to our children.

Complete Article ↪HERE↩!

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Why Some People Wait To Die Until They’re Alone

By Jennifer Anandanayagam

Dying alone usually has a negative connotation attached to it. This is probably why movies portray it as sad and heartbreaking. On the flip side, dying while being surrounded by friends and family is often thought of as a good death. The person was loved and made to feel secure as they passed on. They didn’t have to endure the pain of dying alone.

But what happens in the final moments of death is a subject that’s largely still being discovered. No one really knows for sure definite answers to the big questions like “Does your consciousness continue after you stop breathing?” or “Will you have a better death if you have loved ones surrounding your bed?”

Social researcher and death studies scholar Glenys Caswell from Nottingham University noted that, for some people, dying alone is something that they choose of their own accord (via The Conversation). One of Caswell’s studies, which was published in the journal Mortality in 2017, involved interviewing 11 elderly persons who lived by themselves and seven hospice nurses about their thoughts surrounding dying alone. While there was some belief among the hospice nurses that dying alone is not something they’d endorse, Caswell found that for the older people, “dying alone was not seen as something that is automatically bad, and for some of the older people it was to be preferred.” They preferred it to having their freedom curtailed or being confined to a care home.

They Might Die Alone To Spare Their Loved Ones Pain

Lizzy Miles — a Columbus, Ohio-based hospice social worker and author of “Somewhere In Between: The Hokey Pokey, Chocolate Cake and The Shared Death Experience” — is of the opinion that some people can choose when they die. She wrote in the hospice and palliative medicine blog Pallimed that people who choose to wait and die alone might be doing so out of concern for their loved ones.

“We have those patients who die in the middle of the night. We hear stories about the loved one who just stepped out for five minutes and the patient died. We may have even witnessed a quick death ourselves. I believe this happens by the patient’s choice,” wrote Miles. She added that this happens mostly in instances when the dying person is a parent. “I believe it is a protective factor,” she explained.

Henry Fersko-Weiss, a licensed clinical social worker and executive director of the International End-of-Life Doula Association, feels slightly differently about the topic. While he doesn’t discount the fact that some people might die alone, he shared in a YouTube video that people like feeling connected and safe before they pass away. Fersko-Weiss said that “because of the way we think about death, [we] feel that we’ll be a burden to loved ones” if we let them see us die. Sparing loved ones the pain of it all might be at the heart of the decision but this is something friends and family should have an open conversation about, he added.

Having An Open Dialogue With Your Loved One Can Help

No matter how painful those final moments might be, it can be a good idea to equip yourself with the right tools to have open conversations that foster understanding on both sides, say the experts. You might want to lean into what dying people want you to know about how they’d ideally want to go, and also assess your own emotions, cultural biases, and ideas around it. If you’re unable to broach the topic yourselves, enlist the help of hospice care workers or even a therapist.

It is possible that the person who is dying is concerned that the loved ones whom they are leaving behind will carry with them for the rest of their lives the burden of seeing them pass, shared Fersko-Weiss in the video. You could reassure them by saying something like, “Of course, we want to be there. It doesn’t matter how it looks or how it sounds or how emotionally difficult it may be to be present. It is part of our love for you that we would want to be there,” said the death doula.

How you choose to be present when someone you love is dying is a decision both the dying and those being left behind can arrive at together, per the experts. And, in the instance when your loved one chooses to wait and die alone, “openness created through discussion might also help to remove some of the guilt that family members feel when they miss the moment of their relative’s death,” added Caswell (via The Conversation).

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“The hardest part is seeing them deteriorate having got to know them”

— A Q&A on supporting people at end of life in care homes

With more and more people expected to die in care homes over the coming years, it’s more important than ever the professionals working there get the practical and emotional support they need to provide excellent end of life care.

By Dr Julie Watson

When we think about what it means to die at home, it can be easy to jump to one idea of what this looks like. That is, a rented or owned flat, house or other dwelling. But for a growing number of people, ‘home’ at the end of life means the communal setting of a care home.

Right now, 20.5 % of all deaths and 34.6% of deaths of people over 85   happen in care homes. The number of people over 85 is set to increase by 90% by 2048, meaning this figure is only going to rise. The median length of stay in a care home is now 15 months, which means deep relationships form between staff and those in their care.

Good palliative care focuses on quality of life, and also accepts dying as a natural process. It’s vital people working in care homes get the support they need – both practical and emotional – in order to be able to give people in their care the best end of life experience possible.

I spoke to Senior Carer, Loren Hunt, who’s worked in a care home for several years, about what this looks like for her.

Q: First things first, could you describe a typical day?

We help the residents to get up, get dressed and start their day, have breakfast and then see what activities they’d like to do. Throughout the day, we help them with things like going to the toilet and if they need assistance with eating and drinking. We check their general well-being, make sure they’re comfortable and safe.

In the evening, we help them get into their pyjamas, washed and ready for bed. It’s personal care, but also a lot of general life support and making sure they’re happy and comfortable.

As a Senior Carer, I’m responsible for delegating tasks to the team as well as caring for people directly.

Q: What’s the best thing about working in a care home?

My favourite part of my job is just getting to know the residents and building that friendship and connection with them. I enjoy helping people to get the most out of life… Having a dance and being silly, making them happy. Trying to get them to participate in things. I think there’s a perception that if you go into a care home, you just sit in a chair all day and that’s that. But it’s not like that really.

Some of the people we care for have had such interesting lives. We’ve got so many residents who have done a lot of travelling and lived abroad and have wonderful stories. So it’s really nice just having chats about that with them as well.

Q: What’s the most challenging part?

We’re taught to not get too connected to the people in our care so that we don’t get upset when they do pass away. But when you do see people deteriorating and then getting to that point in life where they’re reaching the end, I think that’s the hardest part.

It can take months and months, or it can be really, really quick. But as soon as you realise it’s coming, it’s sad. And of course, when they do ultimately pass away, it is upsetting because as much as you’re advised not to get too emotionally attached, you can’t help it really.

I feel like you wouldn’t be doing your job as well as you could if you didn’t get connected to the people you care for.

Q: What are the challenges of caring for someone who’s approaching the end of their life?

If you’ve known someone for a while, it can be hard to adjust to their new needs because you get so used to them being able and not needing as much support. You have a routine together, so when it suddenly changes you have to adapt and think: ‘Ok, how can I now best support this resident now?’

And it is a lot of learning to do, and there may not be much time. It would definitely be helpful for more training on that side of things. It’s the area where I personally feel the least knowledgeable. Because it’s so different from person to person, and there is no set of rules which say: ‘OK, when this happens, you do this’, because everyone is different.

Q: Could you give an example?

One area which is often spoken about is eating and drinking at the end of life. There’s this perception that as soon as someone’s palliative, they don’t need to eat proper food anymore. That fluids should be thickened, or food should just be things like ice cream and yoghurt.

But that’s not necessarily true for everyone. For some people it might be, but others might manage to eat and drink fine until the very last stages. Or they might just want a taste of their favourite food. There’s nothing to say that if they want a taste of salmon or a roast potato, they can’t have that. They might not have a lot, but it means they’re still able to have that pleasure.

I think carers are often scared, thinking ‘what if I give them this piece of potato and they choke?’ so it feels safest to default to the ‘safest’ option. To have some help with confidence so that, for example, if someone does ask for a bite to eat, you can use your judgement and understand how to make it as safe as possible.

Q: Do you experience the very end of someone’s life very often?

Yes, people will quite often die in the care home so that’s something I’ve experienced quite a lot. There have been a few instances where people have suddenly become really unwell and been taken to hospital and died there.

It’s not as nice when you don’t really know what happened. You don’t know if their death was nice or not because they weren’t at home. And from what we hear, I don’t think it’s usually as peaceful as it is when they die in the care home, in their home.

Q: What does giving someone a good death mean to you?

I think what really separates the really nice death experiences that I’ve had from the not so nice ones is just being able to have that personal element to it. When you’re able to do all you can to make sure they’re happy and comfortable in their last moments.

An expected death makes it a lot easier to make sure it’s a nice one. But even when it’s unexpected, I think it’s about the resident having everything they need in place, such as their medications – so they remain peaceful and not too distressed.

It’s also having people they know around them. It makes a huge difference when staff who’ve known the residents for years can be with them as they die, and can put like their favourite music on or sit and just have a chat about things if they’re still able to talk. We’re quite lucky that we have quite a low staff turnover. A lot of our staff have been there for 10 years or more.

A not so nice death would be obviously if they didn’t have all their medication in place to support them, because I think the worst thing is when a resident gets really distressed and there’s nothing you can do about it. But also, if they’ve never met the person who’s with them, and if they didn’t know their likes and preferences. If they weren’t able to sit and have a chat with them and support them in their weakest moments.

Thinking about that person as a human being who needs connection, just as we are all human and seek and build those relationships. It’s very special to be there when someone’s dying, but when you feel uncertain, unsure or like something’s not right for them, it can be very hard.

Complete Article ↪HERE↩!

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Reclaiming the D-Word

— In planning for end of life, we first need to be able to talk about it.

We all know we’re going to die, but it’s one of the few human experiences we don’t like talking about. How can we change that?

By

Death—it’s a reality of life that on a certain level we know will come for us all, but one that in our modern world we have managed to push to the peripheries. The average lifespan for a Canadian in 2020 was a hair shy of 82 years – over 84 years for women and around 80 for men. This means we are living on average a quarter century longer than we did a hundred years ago, a fact we tend to forget about when we think about the institutions established in this country in generations past.

This coupled with the fact that multigenerational households are increasingly rare in this country means that for a great many Canadians, death is a remote concept that only rears its head upon the passing of parents, which increasingly takes place in the latter half of people’s lives. More than ever before, it has become easy to simply not talk about death and, when we’re forced to, do so in hushed tones and with euphemisms like ‘pass away’.

The upshot of this is that of Canadians under the age of 35, less than a quarter have a will and less than ten percent have drawn up powers of attorney. This is a precarious position to be in. Despite life expectancies being longer than ever, people still die all the time and at every age. Without these important legal documents in place, family members’ grief can easily be exacerbated by legal hurdles and interpersonal conflict.

Planning for end of life, however, requires braving the subject of death, something that feels unnatural to many of us. Sometimes it takes an unexpected, sudden death in the family or in one’s inner circle to bring the subject to the forefront.

A (Sort of) Cautionary Tale

Tania Jacobs’ story is a prime example of how the unimaginable can occur in an instant and a lesson in the importance of communication within families. A Calgary-based registered psychologist and mother of two children, aged ten and twelve, Tania lost her husband Trevor when she was 37. A sudden illness – invasive Group A Streptococcal disease – took him from initially calling in sick from work on a Friday to dying on a dialysis machine in hospital two days later.

So unusual were the circumstances of her husband’s death that, even within a young widows’ group she joined after her loss, she felt like something of an outsider.

“Within the group, about a third of the women had lost a partner to cancer, another third to suicide and other mental health-related deaths, and a further third to heart attacks, car accidents, and other relatively common occurrences,” she notes.

“And then there was me in this very narrow band of those who lost someone to freak illness. My experience represented a tiny minority within this group.”

Had her family dynamic been different, Tania could have ended up a cautionary tale. While she and her husband had had brief conversations about not wanting to be hooked up to a machine at end of life, there was no will or enduring power of attorney in place, and her husband’s finances were not particularly well organized. For example, he had an RRSP that was set up in his childhood with his sister as beneficiary, something he had not changed in adulthood.

“I was very lucky that there was no fighting among family members,” she asserts.

“I’ve heard plenty of stories where this is not the case. In my situation, my husband’s parents and siblings were completely on board with me being the sole beneficiary. In the case of my sister-in-law, when I contacted her about the RRSP, she immediately transferred the beneficiary status over to me. That said, it would have been smoother and easier had we had all those documents in place.”

She also benefited from the fact that her stepfather had been the personal representative of the will for both of his parents and was able to guide her through the estate process. A referral from a lawyer friend of hers to an estate specialist also meant she was able to navigate this process smoothly despite being, in her own words, a “grieving zombie who was barely able to function” and not having a will in place.

In the aftermath of her husband’s death, Tania got all her personal affairs in order, including a will, personal directive, and enduring power of attorney. Furthermore, she notes that many of the people in her inner circle did the same thing shortly thereafter.

“I know a lot of our friends took us as a cautionary tale and went and got this stuff sorted out,” says Tania.

“Many of our friends were like, wow, we don’t have a will! We don’t have any of that stuff in place either. As for my mom, who is a really organized human being who certainly had those documents in place, [she] took this as a sign that she needed to update everything. It’s like there was a ripple effect involving people in my life, where everyone took this as a sign to take some sort of action.”

She also intends to broach the subject with her own children.

“Now that my kids are moving towards adolescence, I see us having conversations about this stuff. They’ve already been through a lot in terms of grief counselling and whatnot, so they’re very familiar with death. Of course, I don’t want to scare them or get them worked up about the possibility of their mother dying, but it’s coming to be that time. Even explaining to them what this conversation was about, saying that I would be talking about daddy’s death and the preparation people need to do around that, was perhaps the beginning of that conversation.”

A Death-Adjacent Life

For Tania Jacobs, death was a remote concept until it struck her family out of the blue. For fellow Calgarian Marie Carlson, however, it’s been a reality of life for a long time and one with which she has become ever more comfortable. Marie is a retired former health policy specialist with Alberta Health Services with a background in medical sociology. She is now an energetic volunteer at Calgary’s Dulcina Hospice, the largest hospice facility in Canada west of Montreal, where she interacts daily with residents in the final months of life.

Marie’s introduction to death came early with the loss of her brother at age 31 to colon cancer when she was only 15. Her brother’s death led her to pursue a partial degree in theological studies in addition to her sociology degree and to dive into the subject of death and dying. Her interest in the subject stayed with her over the course of her career and influenced her decision to become a hospice volunteer following her retirement.

“I’ve always wanted to do this work,” says Marie of her volunteer role.

“Back when my brother died there wasn’t palliative care like we know today, and I’ve always wanted to help people live as well as possible at the end of their lives.”

In her volunteer work, Marie finds herself up close and personal with death daily. She notes that in her work, as well as in life, she does not shy away from the d-word that so many people replace with euphemisms like ‘pass away’. In the hospice setting, the word ‘death’ is standard parlance.

Given her longstanding acquaintance and interest in end of life, it’s hardly surprising that Marie takes her own end-of-life planning very seriously.

“I’d say I’m pretty prepared for death,” she explains.

“I’m very aware of my own mortality and I continue to get ready for end of life. I’ve done all my paperwork—my will, my personal directive, and my enduring power of attorney, and I encourage others to do the same. I’m also doing my ‘death cleaning’ right now. I’m of Swedish descent, and the Swedes have a tradition that they call ‘death cleaning’, where you clean out all your junk before you die. It’s a way of getting things in order so that there’s less work to pass on to your family when the time comes. I don’t want to wait until I’m too old, so I’m doing it now.”

Her relationship with death has also impacted her relationships with family and friends and the emotional presence she brings to her interactions.

“I’ve experienced a lot of deaths over the years,” she notes.

“My brother died. My parents are dead. My niece is dead. I’ve had a cat and a dog die. Some of my friends have died. I have a sister who is 87 and her health is starting to fail. We don’t get to this stage in our life and not experience death. Knowing what a difference companionship can make to a dying person and their family has affected how I engage with others. I think about my brother, who was only 32. His death really impressed upon me how important it is to just be there, to just be open and be present. It makes me mindful to spend quality time with the people I care about.”

Meanwhile, Marie continues to be positively impacted by her interactions with hospice residents and the palpable joy many of them exude at end of life.

“I’d say my biggest surprise working in a hospice setting has been the amount of laughter and joy you encounter. I know that probably sounds weird. There’s a lot of black humour that I hadn’t expected. Sometimes people say, ‘Gee, that must be a really depressing place to work. How could you go in there?’ But the amount of laughter that we have with our residents, families, hospice staff and other volunteers is unbelievable. Obviously, not every day is like that, but it’s like a little epiphany how beautiful this experience can be.”

“With hospice care, it’s essential to have a strong volunteer program with skilled and compassionate coordination, such as we have at Dulcina,” she further adds. “It’s the entire package of programs and volunteer support that enables us to do this valuable work.”

Talking About Death

Death—it’s a topic of conversation that never killed anyone, but one that many cultures avoid as though it did. Fortunately, a death positivity movement has begun to take shape in recent years, a movement that promises to take the stigma out of the subject and create a climate more conducive to end-of-life planning.

One of the most visible drivers of death positivity has been the growing worldwide phenomenon of Death Cafes. Founded by Jon Underwood and Sue Barsky Reid in the UK in 2011, the Death Cafe movement has since gone global, with gatherings now having been held in more than 80 countries. Death Cafes are get-togethers typically held in libraries, places of worship, and other public venues as well as actual cafes. They provide a safe space to talk about death and dying, which, in Underwood’s view, “helps people make the most of their (finite) lives.”

Death Cafes can also serve as a venue for talking about the importance of end-of-life planning. In Alberta, Covenant Health’s Palliative Institute has been promoting Death Cafe as such a venue, providing resources for current and aspiring Death Cafe facilitators while also producing publications related to advance care planning and end-of-life-related legal documentation for distribution at these events. One publication is My Wishes Alberta, a workbook that serves as a gentle introduction to end-of-life planning, encouraging readers to reflect on their most salient values and identify their wishes for if and when they succumb to a serious illness.

In the cases of Tania and Marie, it took an untimely death in the family to trigger inner reflection and outer conversations about death. This in turn leads to legal documents being put in place to ensure their own end of life will be as pain-free for family members as possible. The death positivity movement seeks to destigmatize the subject of death and create a culture wherein people don’t have to experience the unimaginable to ready themselves for the inevitable.

Complete Article ↪HERE↩!

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The Life-or-Death Answers We Owe Our Loved Ones

— How our life ends isn’t always up to us, but that question too often must be answered by loved ones and health care workers who don’t know what we would want.

 

By Joel Theisen, RN

His name was Bob. He was 82. The way he decided to die should speak volumes about the way the rest of us can choose to live.

For many years, Bob had suffered from a serious chronic heart condition. With Bob’s health woes mounting — and his quality of life suffering — a team of surgeons and nurses prepared in a hospital to do exactly what our medical system is programmed to view as the next step: open-heart surgery.

So Bob decided to take the biggest chance of all. He said, Stop. Let’s pause for a moment. Let’s talk about what we’re about to do here and, especially, about who wants to do it and why.

He met with his daughter and son, and together the family decided that a major operation on an 82-year-old man with a chronic cardiac problem just didn’t make sense for his own values or life. He didn’t want his last breath to be in a hospital surrounded by strangers. He canceled the surgery, returned home, received palliative and hospice care and died in peace in his own bed surrounded by loved ones.

Engaging empathy and humanity

Our health care system is set up to engineer medical miracles. We have the doctors with the skills, the hospitals with the equipment and the biomedical engineers with the technology. Too often, what we lack, though, is the crucial pause to engage our empathy and humanity.

As a critical care nurse and CEO of a complete senior health company, I have seen too many seniors traumatize themselves — and their loved ones — by delaying any talk about death. That’s why I found inspiration in Bob, his family and their difficult personal choice.

How do we want our life to end? It’s not always up to us, but too often that question must be answered with a hunch or a guess by our loved ones and our health care workers.

Fewer than half of all Americans over 50 years old have recorded their medical preferences for the end of life, according to a poll by AARP and the University of Michigan. Why? Of the people without any medical directive document, 62% said they had not gotten around to it, 15% did not know how, 13% said they do not like talking about death, 13% did not think it was necessary, 9% said no one asked them to, and 7% were deterred by cost.

The financial consequences of death go unplanned, too. More than half of Americans don’t have a will, Gallup found, and the avoidance even extends to those with the most to lose: One in five Americans with investable assets of $1 million or more have no will, according to the Wall Street Journal, citing a Charles Schwab survey.

Avoiding the gut-wrenching choices

Nobody enjoys talking about death, but ducking the subject just saddles everyone else with gut-wrenching choices. Is it really fair to make your spouse or kids wring their hands over the decision to put you on a feeding tube, or a ventilator, or dialysis? After a certain age, or after certain prior health conditions, should you be resuscitated after a major stroke, heart attack or seizure? What if dementia strips away your ability — or your spouse’s ability — to make key life-or-death decisions?

In a medical emergency, the reality is that health care professionals will begin life support immediately unless there is a clear directive saying you don’t want it.

That will be the preferred decision for many Americans with personal or religious reasons to always extend life. A Kaiser Family Foundation/The Economist poll shows, however, that only 19% of Americans believe the top priority for end-of-life care is preventing death and extending life as long as possible. A far greater majority, or 71%, says it’s more important to help people die without pain, discomfort or stress.

When asked to list the leading preferences for their own deaths, the top priority, listed by 87% of respondents, was to make sure their family was not burdened financially by their care. The least important priority was to live as long as possible.

For people who want a good death more than a prolonged death, the U.S. has excellent palliative care and hospice care. Death can come with more compassion than pain, in your home instead of a hospital, surrounded by loved ones who know your hopes instead of medical professionals who can only guess.

What you can do

Try putting yourself in the shoes of your family, friends and doctors. What should they know about your last wishes if you are too incapacitated to tell them?

The best solution is to write a legally enforceable will that has clear medical directions and responsibilities. Many states allow you to download online advanced care directives. Work with a lawyer and consult your primary care providers for guidance.

You owe the key people around you an indisputable written record or personal video interview spelling out what should and should not be done at the end of your life.

Bob was brave enough to be clear about his final wishes with his family. We should be brave enough to follow his example.

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My husband said he’d found a cure for his terminal illness.

— A year later he was gone

Julie and Nigel in their early years together

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‘Life-limiting’. ‘No cure’.

These were the words the doctor used to explain that my husband, Nigel, had three to five years to live, and I felt numb.

Moments like this are not at all what you imagine.

There’s no darkening sky, no rumble of thunder. Your heart doesn’t miss a beat and the world doesn’t hold its breath. Everything remains the same.

And yet, for us, nothing would ever be the same again.

The first sign that something was wrong with Nigel came in the summer of 2006 when I noticed the gradual deterioration and slurring of his speech.

‘My tongue feels like it doesn’t belong to me,’ he said, nonchalantly, to me one morning. ‘One minute it’s twisting all over the place, the next it’s as heavy as a brick.’

He carried on about his business – washing his clubs before heading out to play a round of golf with his brother – as if this admission was the most normal thing in the world. But the words stuck with me. I was concerned.

To put my mind at ease, we spoke to our GP who, at our request, then referred us to a speech therapist.

She immediately recognised Nigel’s speech problems as dysarthria, a condition where you have difficulty speaking because the muscles you use for speech are weak – but she didn’t know the cause.

A quick Google search will tell you that dysarthria can be caused by conditions that damage your brain or nerves and, to be safe, she advised us to see a neurologist to find out. We did and were told to prepare for a barrage of tests.

Nigel endured blood tests, MRI scans and an electromyography (EMG) test that detects neuromuscular abnormalities, all so that we could eliminate other diseases and find out exactly what was going on.

‘It’s like a liner on the horizon,’ advised the doctor. ‘Not until it gets closer can we be sure what it is.’

A man clings on to scaffolding on the side of a building
Nigel worked for years as a scaffolder

Eventually, diseases such as multiple sclerosis, Parkinson’s, Huntington’s and more were eliminated, leaving us with just one: Motor Neurone Disease (MND).

MND is a distressing, debilitating disease that ultimately robs its victims of the ability to move, speak, eat and breathe.

The night he was diagnosed, as we researched MND on the internet, Nigel found a documentary about a man with MND who had gone to Dignitas – a Zurich-based nonprofit that provides physician-assisted suicide to members with terminal, severe physical or mental illnesses.

‘Poor man,’ I said, but Nigel thought differently. ‘Not a bad way to go,’ he said.

At the time, I thought it was a throwaway comment. Besides, we had treatment and life to get on with, so we never mentioned Dignitas again.

In the years that followed, this degenerative disease slowly and savagely destroyed Nigel’s body.

First his speech was affected, then slowly his legs followed. He went from using a cane to a walker, then eventually a wheelchair. The strength in his neck also went and he needed a neck brace to sit up straight.

Around six years in, he lost strength in his arms. My strong, physically active husband – who, as a scaffolder, once thought nothing of carrying two, 13 inch boards on a single shoulder – could now barely lift his toothbrush towards him.

Our lives were totally transformed by his diagnosis.

We went from being very busy and sociable people to being dominated by procedure in caring.

I cared for Nigel alone for as long as I could, aided by our daughter Ellie, who gave up her job to help us both, but we gradually needed more support.

Towards the end, Nigel had limited movement in his hands and arms and could do nothing for himself. Our home became a private hospital ward and we had a team of carers covering 24 hours a day.

Yet throughout, not once did Nigel bemoan his fate. Nigel, the man, remained inside that ravaged body: gregarious, funny and always joking.

Julie Casson with her late husband Nigel both in black and smiling at the camera
Julie with husband Nigel

In 2009, he took part in a medical trial that was searching for a cure for MND. While we were in the hospital he saw a filing cabinet labelled ‘deceased.’ He laughed and said, ‘There’ll be a slot in there for me soon.’

Sadly, ‘soon’ came a lot quicker than any of us would have liked.

Nigel’s MND had always followed a pattern of plateaus and pits. Sometimes the plateaus went on for months and we would get used to managing his disability. But then he would have a period where his disabilities would get much worse, and he would be much weaker as a result.

And, in August 2016, he suffered a particularly bad episode.

He felt that the disease was starting to attack his spirit and sense of self; that he was disappearing.

Adamant that it would not rob him of his humour and personality, he decided to take control.

‘I’ve found the “cure”,’ he announced the following  September. I held my breath as he explained. ‘I’m going to Dignitas. I want to die while I am happy and can still smile.’

I wanted to protest but Nigel knew his death would be slow. That when his astute, tortured mind became entombed in a silenced, paralysed body, he would be both alive, and dead.

A black and white image of a man and a woman dressed in finery and posing for the camera
Nigel and Julie in happier times

‘I could be buried alive for years, unable to drag a scream from my throat,’ he said. And I knew I couldn’t deny him this final wish.

From that moment on the mission was underway. Nigel opened communication with Dignitas, we told immediate family, close friends and his doctors the news.

Plans were carried out in secret. Applying to die at Dignitas is a bureaucratic minefield and there are several prerequisites – including the need for unassailable judgement and sufficient physical mobility to administer the lethal drug yourself. This is not to mention the mountain of medical reports we had to send off.

Six weeks later, the letter granting Nigel the ‘provisional green light’ arrived. He was elated. He had his ‘cure’ and his dying day was determined.

On our last Christmas Day together, in December 2016, when all the family were gathered, he was in charge of music – he had an extensive playlist on his iPad – and he played the first two words of George Michael’s Last Christmas.

He stopped the music. Then played the two words, ‘Last Christmas…’ again. Then stopped it, and played them again. He thought it was incredibly funny.

That was Nigel.

A man in a wheelchair sitting beside a huge statue of an elderly gentleman sitting on a bench
Nigel gradually lost the use of his legs

The only way to transport a severely disabled man from Scarborough to Zurich was by road. And after a lot of searching, we managed to hire a fully adapted motorhome which we christened ‘Mabel’.

My son-in-law then drove me, Nigel and our three children, Craig, Ellie and Becky, for 24 hours non-stop, and we arrived at Dignitas on the morning of April 25, 2017.

I’m not sure what I expected – a hospital, perhaps? – but it all looked very ordinary.

From the outside it seemed nothing more than a small, blue cladded house in the middle of an industrial estate, with a Lidl supermarket on the corner. And inside, the rooms were basic, with nothing more than a sofa, an electronic, adjustable bed, dining table and chairs and kitchen on offer. But then, I suppose, no one ever stays for too long.

Ahead of the procedure, Nigel had two meetings with a doctor affiliated with Dignitas who would determine whether his wish for accompanied suicide was granted. They needed to officially determine that there had been no coercion, that he was of sound mind and really understood what would happen if they proceeded.

Nigel knew of course, and was determined as ever. So his wish was granted.

We had two escorts who were both very nice, calming and welcoming, and carefully explained what would happen next.

A family sits on garden furniture on a sunny day enjoying refreshments
Nigel and Julie had a loving, close-knit family

‘Are you sure you want to do this, Nigel?’ said one of them. ‘Definitely,’ he replied.

Nigel signed the papers and then my three children and I said our final, agonising, tearful goodbyes.

Craig went first. He collapsed into Nigel’s embrace before saying, ‘You’ll always be my hero, Dad.’

Ellie followed close behind with tears pooling in her eyes. She kissed him on the cheek and said: ‘I’ll miss you, Dad. You were always there for me, and in my head and my heart, you always will be.’

Becky was up last and after smothering her tears by burying her face in his neck she rested her palm against his cheek and said: ‘You can stop pedalling now.’

She was rewarded with the sunniest of smiles and an extra hug. ‘Thank you, Becky. I will. But you can’t.’

Finally it was my turn. Nigel held out his hand for me and I couldn’t help but peer into those fathomless pools. I knew in that moment I would never again see or feel, for as long as I lived, such overwhelming and unconditional love.

‘It’s been a joy to be your husband, Julie. You’ve made me very happy,’ Nigel said.

‘You’ve made me happy too. I’ll miss you, darling.’ I brushed my lips with his and dropped a kiss on each eyelid. ‘I love you, Nig.’

A family selfie including an older man in a wheelchair
Nigel and his family

With one final sigh he turned to us and said, ‘I’m ready’.

After that, my children and I could do nothing but stare as the contraption pushed the barbiturate into Nigel’s body. Once the syringe had emptied, we rushed to enfold him in our arms.

We embraced him as he slipped into unconsciousness. I cradled him as his body slumped. We clung to him as the sporadic rasp of his breathing faded to a muted hush and the soft whisper of his breath was no more.

The only man I will ever love was dead.

Having to tear ourselves away from his body, to leave him there with strangers, was utterly devastating. But part of the paperwork Nigel signed gives Dignitas the power of attorney and enables them to organise the cremation, acquire a death certificate and inform all appropriate authorities.

That meant Nigel would be cremated without a single mourner.  Nobody would place a hand upon his coffin and bow their head in sorrow. Nobody would shed a tear for his loss and there would be no kind words to mark the life of this brave, funny, exceptional man.

Even if we’d wanted to do something, Dignitas advises against repatriation of the body as, apart from it being very complicated, it would likely trigger a police investigation into his death.

Instead, we paid Dignitas to arrange for his ashes to be flown to Heathrow where a funeral director would collect the urn and bring it home. His ashes arrived home about three weeks later.

Nigel has been gone seven years now, but it still doesn’t feel real. We are a close, supportive family and help each other through, and it does help knowing that this is exactly what Nigel wanted. That he could die smiling and with dignity gives us comfort.

But Nigel should have been able to die at home. The UK law on assisted dying must change.

No dying person should have to endure the journey he did – especially when you consider that Nigel had to do it while he still could and therefore definitely died sooner than he needed to. We could have had another six months, even a year.

And no family should have to face the torture of walking away from their loved one’s body. For us, that will alway be the hardest part.

Giving a terminally ill person control and choice over how they die transforms the remainder of their lives and enhances the quality and pleasure of their remaining days immeasurably.

I cannot believe that it is beyond the wit of any British Parliament to devise a law that not only protects vulnerable people, but protects dying people and gives them control, choice and dignity in their dying.

It would have been the least Nig deserved.

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Understanding Hospice

— The emotional difficulties of hospice care have made it underutilized and, to some, taboo — medical professionals are trying to change that

By

Carla Thompson has worked in hospice care for more than two decades, and she knows first-hand just how difficult it can be to make end-of-life decisions.

“You can’t always see the future,” says Thompson, a registered nurse and administrative director for Bon Secours Home Health & Hospice. “When you’re given a diagnosis, you have all these treatment options in front of you. You have to make decisions to keep trying to cure the disease or choose to live with it, focusing on comfort and spending time with family.”

Thompson’s daughter Jessica died last year in hospice services at the age of 31. She fought fiercely for years, but when her breast cancer came back despite aggressive treatment, the family knew it was time to enlist hospice care.

“Jess wasn’t laying in the bed waiting to die,” Thompson says. “She was able to stay home for three months, get the support she needed, and spend time with her four children. She was given medications to help her be comfortable and functional for as long as she possibly could. She was at peace.”

Her hospice team managed her pain and symptoms, brought in a hospital bed and other equipment and provided frequent medical care, services that Thompson says are a blessing for patients as well as their caregivers.

Bon Secours is one of about two dozen hospice providers in Central Virginia. On any given day, hundreds of Richmond-area nurses, chaplains, social workers, home health aides, volunteers and physicians are paying home visits to terminally ill patients, providing them with critical and compassionate support.

Destigmatizing Hospice

While the concept of hospice care dates to medieval times, the first hospice practice in the United States was founded just 50 years ago by a nurse, two doctors and a chaplain who believed patients should pass in their own comfortable environment. Since then, it’s expanded to many providers in all states with two major directions: palliative care and hospice care. In most cases, patients in palliative care are still seeking active treatment, while patients in hospice have a terminal diagnosis and have forgone or exhausted treatment options.

Zach Holt, CEO of Crater Community Hospice in Petersburg, says after 15 years in the business he’s still surprised how many people have misconceptions about hospice. His company is part of a statewide coalition of hospice services working to raise awareness of its benefits. According to a recent report by American Health Rankings, Virginia is 30th in the nation for hospice use, with less than half of Virginians who are eligible for hospice choosing services.

“There’s a big stigma,” Holt says. “People think it’s designed for your last days of life when, in reality, it’s designed for your last six months of life. Studies have shown people across all disease states typically live longer on hospice than they do not on hospice. Our specialized teams are equipped to give patients a higher level of comfort.”

Trish Evans, a registered nurse and director of VCU Health Hospice, admits that hospice is a scary word and fear is a contributing factor for low utilization. “People don’t want to think about death and dying,” she says. “But it’s not about giving up, it’s about your quality of life. It’s a choice on how you want to spend your time with a terminal diagnosis if those are the cards that have been dealt to you.”

Holt encourages Virginians who qualify for hospice to sign up earlier, before they are actively dying, to receive the full benefit. According to the National Hospice and Palliative Care Organization, the median stay for patients in hospice care is 18 days, while Medicare approves stays that are 10 times longer.

Another misconception that leads people to avoid hospice is the possible high cost; in most cases, it’s financially reasonable. According to Debt.org, more than 90 percent of hospice care is covered by Medicare, and patients may be covered through private insurance and charity care.

On the personal end, Evans points out that some believe hospice patients are permanently bedridden at home. “Life can go on,” she says. “There are hair appointments and vacations and family events. We want to give patients the support they need and the comfort they need to continue to do those things before the end stage of their disease.”

Pediatric Hospice Care

When the unimaginable happens and a child is given a life-limiting diagnosis, Noah’s Children provides palliative and hospice services at no cost to families. While run by Bon Secours Richmond, Noah’s Children partners with all health systems in Central Virginia to help families navigate the most harrowing times.

In addition to nurses, physicians, social workers and chaplains, Noah’s Children employs a music therapist, an art therapist and bereavement counselors who visit the patient’s home. They also offer programming for parents and siblings. Nurses are available to attend doctor’s visits, helping parents manage complex treatment plans from multiple sub-specialists.

“We want to debunk the myth that we’re focused on death,” says Dr. Kelly Lastrapes, Noah’s Children medical director. “We’re focused on the best life children can live for as long as they can.”

Planning Ahead

Holt recommends that everyone of all ages have an advanced directive, a legal document that indicates an individual’s health care wishes. “As a society, we don’t like to talk about death, but you have to get uncomfortable and have those conversations,” he says. “I see close-knit families get ripped apart when they haven’t discussed end-of-life care. One sister thinks one way, one sister thinks another, but Mom never told them what she wanted.”

Holt advises families to discuss financials and set realistic expectations. “You hear parents all the time joke about not putting them in a nursing home, so discuss the alternatives,” he says.

As a society, we don’t like to talk about death, but you have to get uncomfortable and have those conversations.
—Zach Holt, CEO of Crater Community Hospice

Some states with high hospice use, like Oregon and Maine, have also passed legislation allowing patients with terminal diseases to self-administer life-ending medication. The Death with Dignity National Center reports that legislation not only eases suffering but brings important conversations about death and dying out of the shadows and into the spotlight. The Virginia Senate passed a “Death with Dignity” bill in February, but members of the House of Delegates chose to table the bill until 2025.

Richmond-area hospice experts recommend that any time a family member has been diagnosed with a terminal illness, they should work with their medical team to prepare a treatment plan as well as an end-of-life plan.

Lastrapes adds that it’s helpful to keep a 10,000-foot view of the patient’s care, understand the trajectory of the prognosis, and set goals early on. While life is filled with unknowns, surrounding yourself with the right people can help ease the pain.

“When you’re born, you have a room full of people to support that baby,” Evans says. “It should be very similar when your life is over. It’s the one thing we’re all going to experience. You should have the ability to surround yourself with your family and your pets and those people who can support you and keep you comfortable.”

Choosing a Hospice Provider

  • Start your hospice conversation with your health care team and ask about preferred partners.
  • Medicare patients can enter their ZIP code at medicare.gov to find certified providers in the Richmond area.
  • Talk to friends, family and neighbors about their experiences with hospice.
  • Once you narrow down several hospice providers, interview them about specific services, additional resources, areas of specialty, organizational culture, religious affiliation and other differentiating factors that are important to you or your family.

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