It’s not an easy subject, but end-of-life planning is a necessary one to to consider.
To get started, it’s a good idea for every adult over 18 to create an advance directive—a set of legal documents that typically has two components: a health care power of attorney, in which you appoint someone called a health care proxy to make decisions for you if you’re unable to, and a living will, in which you lay out your end-of-life treatment preferences.
You might specify, for example, that you consent to antibiotics and pain medications but not CPR, which can cause internal injuries. You can also state that you prefer to die at home. In fact, according to the New England Journal of Medicine, people with advance directives are more likely to avoid dying in a hospital.
Assembling the documents is easy. You fill out paperwork available online through your state’s Department of Aging, and these documents become legally valid after you sign them in front of witnesses. The number of witnesses required varies by state, but you don’t need a lawyer, according to the National Hospice and Palliative Care Organization. After signing the paperwork, give copies to your health care proxy and your doctor. You can change your plan at any time.
Despite the ease of creating the documents, most Americans haven’t done it. In the most thorough study on the topic to date, University of Pennsylvania researchers examined data on more than 795,000 people from 150 studies and found that advance directives were only slightly more prevalent among people with chronic illnesses (38.2%) than healthy adults (32.7%).
“We need to address common barriers to filling out these important documents, particularly among chronically ill patients,” says study co-author Katherine Courtright, MD, an instructor of medicine at Penn. These obstacles include a reluctance to talk to family members about end-of-life preferences—one Yale study found that 40% of people ages 55 and older said they hadn’t broached the topic with relatives—and concerns about the potential time and expense involved.
“Dying in America today can be a protracted, painful, and traumatic experience,” says Sara Moorman, PhD, an associate professor of sociology at Boston College. “And that’s unfortunate, because we possess the know-how to make most deaths comfortable and even meaningful.”
Here are two resources to get you started:
The Conversation Project
Studies have shown that many people don’t talk to family members about what medical interventions they would or wouldn’t want at the end of life. The Conversation Project, however, can help you do just that. The site provides starter kits for family discussions and for appointing a health care proxy.
Prepare for Your Care Prepareforyourcare.org provides advance directive forms and takes you through filling them out and sharing them with family and medical providers.
[I] live, breathe and eat being a veterinarian. I see a pet on a leash, and I check its gait. I see a grey whiskered dog and think of senior issues. I overhear a conversation about a pet’s illness, and I want to add my two cents.
Work is hard. Work is fun, and every day brings challenges. However, I had no idea when I signed up for this job, the sheer number of euthanasias and sadness I would face.
All pets die, and we know this when we adopt them into our lives. We are angels of death to so many, and this is a very, very important part of our lives.
The veterinary profession is unique when it comes to being comfortable with death. Like many aspiring veterinarians, I thought euthanasia would be the hardest part of my job, but it isn’t – not by a long shot.
MDs don’t get it. In the human world, euthanasia is a grave sin even when someone is suffering from a terminal illness.
“Futile care” occurs when a physician cracks the chest of an elderly patient in multi-organ failure who has just arrested, or the oncologist details a complicated journey for a deadly metastatic cancer.
The older you get, the more likely you are to die in a hospital. According to the Centers of Disease Control, 73 percent of people over the age of 65 die as inpatients.
It sounds like a horrible way to go. I hope that statistic changes as more states enact the Death with Dignity Act, and I add more years.
Almost every day I counsel clients as to “When is the right time to let go?” I have changed my criteria for euthanasia over the years and now answer that question with “Consider 6 things that your pet loves to do. If they are no longer able to do at least half of them, then it is time to let go.” This helps, but it is still far from simple.
Every situation and every family is different. I think relief from suffering is a moral obligation, and that it is better to end life too soon than too late. Euthanasia is truly a gift of love.
Never was this more apparent than last week. You might recognize this family because I’ve already written about Buddy.
I shared Buddy, a magnificent Golden Retriever, with Dr. Sybil Davis (a certified rehabilitation specialist).
When I first referred him to her 4 years ago, he could barely walk from a myriad of problems. In 6 months, he was walking and feeling great again.
His family simply refused to give up on him. He’s been a “frequent flyer” patient for both of us over the years.
This visit was different, and when I stepped into the examination room, I knew he was in trouble. He could barely stand and his breathing was labored.
Although Buddy lived in a family of three, he was really the son’s dog. They grew up together, and Alec brought Buddy in for visits. I always thought of Norman Rockwell’s paintings of boys and children whenever I saw them!
After diagnostics and quiet conversation, it was clearly time to let go, but we would not be rushed in making this decision. End of life should be kind – to the owner, as well as the animal.
I tried to walk the emotional landscape that accompanies the decision to euthanize. Do we refer, try hospice care, sleep on this decision for a day or two and reconsider? Could we give Buddy more days of good living? And, if we euthanize, what do we do afterward?
The whole family was present with Buddy, and the parents deferred the decision to Alec. He knew. I could see it in his eyes, but it was too hard to verbalize.
In his heart, he knew that Buddy had finally worn out. What a wonderful young man to put his dog first, and I know his parents were proud of him.
Buddy didn’t know what was happening. All he knew was a sense of tranquility from sedation, a quiet comfortable room and his family surrounding him. He died with grace and dignity, quickly with no pain. It was a gift from his best friend.
I am sometimes overwhelmed by these last moments, but I am also thankful that I can be a part of them. Without great love, there cannot be grief.
Thank you, Alec, for making the right decision, and thank you, Buddy, for the memories.
[O]n a sunny Sunday afternoon marked by perfect September weather, a gathering of nine women and one man wasn’t focused on talk about nature, recreation, hobbies or other aspects of enjoying life.
This group instead met for two hours in a downtown Greensburg office building to discuss the dying process and how to make it better.
The attendees at a free community training session about serving as end-of-life “doulas” heard Promise Hospice President Elizabeth Aungier, who hosted the session, talk about the goal of “a better death” for both terminally ill patients and their families. The former nursing home administrator has run her Greensburg hospice since 2010, but in navigating her own father’s death in 2015 she needed to lean on a friend for help.
She realized an additional layer supplementing a hospice team would be useful for families during a daunting, emotional process that is new to many of them.
“After my dad passed away I figured, if I needed extra support and I’m supposed to be an end-of-life expert, what about the individual that doesn’t have that knowledge? How can we help fill the gap between what the medical profession provides and maybe what a family needs?”
Ms. Aungier became intrigued by what she heard of end-of-life doulas and went through training herself last year in New York City from Doulagivers Inc. There she learned communications and technical skills related to helping people with their dying wishes and the closure they sought in relationships with others, as well as more procedural issues such as advance directive preparations and the type of funeral or memorial services they wanted.
Doulas are taught to sit, talk with and — especially — listen to terminally ill people in a non-judgmental way. If it goes right, they learn about their lives, build a rapport and help them face whatever fears they may have about the future. They can do so without the baggage of family members or the requirements of hospice staff who may be on a busy schedule to provide personal care and pain relief before moving on to the next client.
“The doula may spend extensive time helping an individual do a life review or legacy project or tangible account of history we can give to people they leave behind,” Ms. Aungier added, while emphasizing they are to leave medical issues to professionals such as a hospice nurse.
The end-of-life doula concept is new in southwestern Pennsylvania, she said, with New York and California among the still relatively rare places in the country where organizations like Doulagivers provide detailed training for a fee. Doulas are more commonly associated with births; while employed in only a small minority of those, they are nonetheless accepted as providing non-medical emotional and educational support for new mothers.
In either case — for births or deaths — doulas generally lack government certification or regulation and are paid by private resources rather than Medicare, Medicaid or other insurance.
Ms. Aungier sought to supplement her hospice business by starting PromiseCare Doulas in June, advertising $50 hourly services to support dying individuals through their final stages, but it has been slow to find clients. Ms. Aungier is undeterred, believing it’s an important and helpful concept. She has had most of her hospice staff trained in it to help them in their regular duties as aides, nurses and social workers.
“We’ve learned how to be more one-on-one now with patients in the dying process, understanding better how to walk them through that,” said Ginny Cabala-Carper, 28, a hospice aide for five years who was among staff in the spring going through weekend-long doula training sessions Ms. Aungier arranged for them.
“This will help us in our personal life, too,” Ms. Cabala-Carper said. “We’re all going to have loved ones die someday, and this helps me see what my parents and grandparents will need.”
Sunday’s session was the first of a series of free, two-hour educational presentations Ms. Aungier said she intends to provide for anyone from the community. They could be for those interested in being hospice volunteers, whether for her operation or others. They could also be for people simply interested in increasing knowledge to help relatives, friends and neighbors.
And others could treat it as the first step to someday hanging a shingle to offer service themselves as an end-of-life doula, though Ms. Aungier cautioned that they shouldn’t expect an immediate flood of calls.
“People don’t really seem to get it yet,” she said, having heard more commonly from people interested in getting help with bereavement after a death.
Arleen Hawk of Greensburg, a retired hospice social worker who was among the group Sunday, said it sounded to her like doulas could do more for families than the more limited aspects of what she did in her role while working.
“They can take it to the next step and help families feel they’re not missing anything,” she said.
Nisha Bowman, an intensive care unit social worker at UPMC Presbyterian with a pronounced interest in death and dying issues, attended to learn more about the doula concept as someone who may focus her career on end-of-life issues in the future.
“It just make sense,” said Ms. Bowman, 34, of Perry South. “If we have it for births, why not have it for deaths? … To know that there’s people who are trying to help people do death better is very heartening, because there’s still a lot of stigma to it.”
[I]n the narrow room the old man lay close to death.
Two days before, he had ceased to speak, lapsed into unconsciousness, and the final vigil had begun. The ravages of cancer had eaten into the flesh leaving only a skeletal husk. The heart beat on and the lungs drew breath but it was impossible to tell if he remained aware.
In the bare whitewashed room, no bigger than a prison cell, 10 watchers – the mná caointe – the wailing women, were calling out, keening, sharing the last moments of the life, and the death, of this man. My father. Sonny.
“Holy Mary, mother of God, pray for us now, and at the hour of our death.”
In the tight, enclosed space, the sound of this chorus of voices boomed off the walls, the ceiling, louder and louder, reverberating, verse after verse, on and on, cradling Sonny into death.
This death so open, so different from the denial of the Anglo-Saxon world would, too, be Sonny’s last parental lesson.
How to die.
If you have never been to an Irish wake, or only seen the movie version, you probably think a wake is just another Irish piss up, a few pints around the corpse and an open coffin. But you would be wrong.
In the Anglo-Saxon world, death is a whisper. Instinctively we feel we should dim the lights, lower our voices and draw the screens. We want to give the dead, dying and the grieving room. We say we do so because we don’t want to intrude. And that is true but not for these reasons.
We don’t want to intrude because we don’t want to look at the mirror of our own death. We have lost our way with death.
On the Irish island where my family have lived in the same village for the last 200 years, and in much of the rest of Ireland, death still speaks with a louder voice. Along with the weather reports of incoming Atlantic storms, the local Mayo country and western radio station runs a thrice daily deaths announcement enumerating the deaths and the funeral arrangements of the 10 or so daily freshly departed. There is even a phone line, 95c a minute, just so you can check up on those corpses you might have missed.
There should be nothing strange about this. In the absence of war and catastrophe, humans across the planet die at an annual rate of 1%; 200,000 dead people a day, 73m dead people a year. An even spread. It’s happening all around you even as you read this article; the block opposite, the neighbouring street and your local hospital.
If the local radio in London or New York did the same as that Mayo station, the announcer would have to read out the names of 230 dead strangers, three times a day, just to keep up.
Of course, if you live in a city such as London, where 85,000 people die each year, you would never know of these things. Such a very public naming of the dead, an annunciation of our universal mortality, would be an act of revelation in the Anglo-Saxon world. And likely deemed an outrage against “public decency” – which would almost certainly lead to advertising boycotts and protests.
More shocking still then would be the discovery of another country where the dying, like Sonny, the living, the bereaved and the dead still openly share the world and remain bound together in the Irish wake.
And death, in its very ordinariness, is no stranger.
My father, Sonny Toolis, was too a very ordinary man. He was never rich or powerful or important. He never held public office and his name never appeared in the newspapers. The world never paid him much attention and Sonny also knew the world never would. He was born poor in a village on an island, devoid of electricity, mains water and tarred roads, in much the same way the poor have been born in such places for most of human history.
Sonny never got the chance to get much of an education and worked most of his life as a foreman on building sites earning the money to pay for the university education of his seven children.
Sonny was good with his hands though. Useful to have around if things went wrong with the electric, the drains, or you needed the furniture moved. He had his limitations; he did not like strange peppery foods, he wasn’t very comfortable wearing suits, and he was terrible at giving speeches at weddings.
He did have a great singing voice, played the bagpipes and the accordion, and taught his children to sing by what he called the air – by listening along. In the 1960s, he bought a 35mm German camera, took pictures, and ran the prints off in his own darkroom. He even shot film on Super 8. But it was never more than a hobby. Like a lot of us, Sonny had some talents he would never fully realise in life.
But Sonny really did have one advantage over most of us. He knew how to die. And he knew how to do that because his island mothers and fathers, and all the generations before, had shared their deaths in the Irish wake and showed him how to die too.
His dying, his wake, his willing sharing of his own death, would too be his last parental lesson to his children and his community. A gift.
The wake is among the oldest rites of humanity first cited in the great Homeric war poem the Iliad and commonly practised across Europe until the last 200 years. The final verses of the Iliad, the display of the Trojan prince Hector’s corpse, the wailing women, the feasting and the funeral games, are devoted to his wake. And such rituals would be easily recognisable to any wake-goer on the island today.
For our ancestors, a wake, with its weight of obligations between the living and the bodies of the dead, and the dead and living, was a pathway to restore natural order to the world, heal our mortal wound, and communally overcome the death of any one individual. An act, in our current, thin psychological jargon, of closure.
Through urbanisation, industrialisation and the medicalisation of death, the wake died away in most of the western world and death itself came to be silenced by what might be called the Western Death Machine. But out in the west, among the Celts, this ancient form of death sharing lives on.
When he was 70, my father was diagnosed with pancreatic cancer – still among the most fatal cancers among western men. Sonny never flinched. He did not want to die but when he knew he had no choice, he never wasted the time he had left. He wasn’t angry or embittered but something wiser – he accepted his death. He got on with his dying the same way as he had got on living, day by day, pressing forward, husbanding his energy.
Sonny’s time had come but neither he nor his community denied his impending death. Unlike the shunning of the Anglo-Saxon world, his house filled with visitors who came to see him because he was dying.
Dying is an exhausting, self-centring act. Sonny, always a powerful physically imposing man, rapidly shed powers like a snake shedding skin. His world shrank to two rooms and Sonny knew he would never see the end of that fateful summer.
Sonny’s fatherhood was ending and my own beginning. Our last words together on his deathbed were very ordinary, bland. “I’ll let you go, son,” he said as I left to return to the city. When I returned, he had lapsed into a coma and could no longer speak.
But our parting was fitting. There was no more mystery to share. No revelation to be uncovered. Our identities as father and son had already been written out in the deeds of our life together; Sonny changing my nappy, not losing his temper in my teenage contrariness, encouraging me in my education and the summers we shared on building sites when I worked alongside him while still a student. And in all the countless ways he showed me in his craft how to be a man and father myself.
Sonny died just before dawn on the longest day of the year at home in the village of ancestors. No one called for help, or the “authorities”. He was already home with us. His body was washed and prepared for his coffin by his daughter and sister-in-law. He was laid out in his own front sitting room in an open coffin as his grandchildren, three, five and nine, played at the coffin’s feet.
His community, his relatives, some strangers even, came in great numbers to pray at his side, feast, talk, gossip about sheep prices or the stock market, and openly mark his death in countless handshakes and “Sorry for your trouble” utterances.
We waked together through the night with Sonny’s corpse to guard the passage out for his departing soul and man the Gate of Chaos against Hades’ invading horde lest the supernatural world sought to invade the living world. Just as the Trojans too before us had watched over Hector’s corpse. A perpetual quorum; dying in each other’s lives and living on in each other’s deaths at every wake ever since.
It was blessing of a kind, an act of grace. We give ourselves, our mortal presence, in such death sharings, or we give nothing at all; all the rest of our powers, wealth, position, status, are useless.
To be truly human is to bear the burden of our own mortality and to strive, in grace, to help others carry theirs; sometimes lightly, sometimes courageously. In communally accepting death into our lives through the Irish wake we are all able to relearn the first and oldest lessons of humanity. How to be brave in irreversible sorrow. How to reach out to the dying, the dead and the bereaved. How to go on living no matter how great the rupture or loss. How to face your own.
And how, like Sonny, to teach your children to face their death too.
News headlines can feel like a catalogue of death and destruction, but are we really grappling with the reality of human mortality? The answer is no, according to a new festival.
By Eloise Fuss and Lisa Skerrett
The Festival of Death and Dying wants us to stop focusing on our jobs, mortgages, children and relationships for a minute to consider life’s biggest unknown: death.
“We all live in a way as if we’re going to live forever,” said Festival of Death and Dying director Dr Peter Banki.
“To produce a cultural shift we need to do more than just talk about death and dying, I think we need to actively learn more about it, and even experience it in a certain way.”
The festival takes place in Melbourne this weekend after a successful debut in Sydney last year, with plans to also expand to Adelaide and Berlin.
Using art installations and immersive workshops, it hopes to provoke contemplation about how societies mark death and come to terms with the inevitable loss of friends and family.
“[Death] is probably the most difficult thing that any of us will ever have to do, and it’s probably the most important thing one can do for someone else — witnessing someone dying, accompanying them, and taking responsibility for their legacy and their memory,” Dr Banki said.
“You can’t experience death as such, so you need art — it helps us bear witness to it, even if it doesn’t save us from it.”
Mainstream Australia distanced from death
Before modern medical breakthroughs like vaccines and penicillin, it was more common to die at home, meaning most people had firsthand experience of human death.
Traditional funeral rites were also largely a family affair — a far cry from today’s funeral industry, which Dr Banki thinks has “commodified” the personal experience and expression of grief.
“We don’t see death, it’s hidden from us,” he said.
“You have a funeral and you might have a get together afterwards but that’s about it, there’s nothing within the culture that’s there or any type of ritual or ceremonial way to mourn our dead.”
One project helping people create ritual around death is a fashion designer making garments for the grave.
Pia Interlandi combines skills in fashion and funeral celebrancy, working with individuals and families to create bio-degradable clothing to be buried in.
“It neither denies nor flirts with death, but presents it in a way that invites observers to view it as natural, undeniable, inevitable and at times, beautiful,” said Ms Interlandi.
Rituals and mourning
There is another older way of thinking about death close to home too: the complex mourning rituals of Australia’s Indigenous cultures.
Artist Maree Clarke builds an understanding of grief from an Indigenous cultural perspective, by guiding people through the experience of wearing Kopi mourning caps, or widow’s caps.
“In different areas some women would cut off their hair, weave a net of emu sinews, place it on their head and then plaster their head with gypsum, a very heavy river clay.
“They represented the weight of your grief, so the heavier it was, the bigger connection to the person that had passed.”
Dr Banki said mainstream Australia, which had “completely missed out on these ways of mourning”, had a lot to learn from Aboriginal cultures about dealing with death — and that getting “hands-on” helped in the process.
“There are other people in Australia also working to promote people to learn and have conversations about death and dying, but it’s always within the realm of speech and lectures and talks,” he said.
“We think deep learning happens when people feel something, when people experience something, and for that you have to get them to try on a garment or have to get them to try on a hat, or go into a coffin.”
[I]n Japan, where funerals often require elaborate preparation and involve religious rites, honoring the deceased comes at a very steep price. It costs about 550,000 yen (~$5,030) just to hire the services of a Buddhist monk, whose duties include chanting sutras. But now families have a more economical option to stand in place of these religious men: a robe-donning robot named Pepper who’s been trained to recite prayers and scripture while tapping a little drum. It can even livestream ceremonies to loved ones unable to attend a funeral in person.
Plastics manufacturer Nissei Eco introduced Pepper last month at Tokyo’s annual Life Ending Industry Expo — Japan’s largest trade show for everything funeral-related — and intends to offer its services at a cost of 50,000 yen (~$460), according to Japan Times. It’s an incredibly niche and unusual position for the four-foot-tall bot, which was originally designed by SoftBank Robotics as the first humanoid robot to live with humans, and the first capable of perceiving and responding to our emotions. Other Peppers have found homes in hospitals, where they work as receptionists, and in banks, where they greet and assist patrons. As Hyperallergic’s Allison Meier experienced first-hand, this little android is quite capable of displaying empathy.
Nissei Eco started tinkering with Pepper a year ago. A company spokesperson told Japan Times that its repurposed bot is part of a larger effort to innovate the funeral industry, as customers increasingly seek alternatives to traditional rituals. The robo-monk may also serve as a substitute to human priests when they aren’t available. As Nissei’s executive advisor Michio Inamura explains in the video below, priests are increasingly seeking part-time work outside their temple duties as donations from families affiliated with temples are in decline.
“So we thought that Pepper could fill that role of worship,” he concludes. Buddhist monk Tetsugi Matsuo, however, questions whether the smiling machine can offer guidance that is spiritual at heart, rather than simply replicate the physical demands of these age-old duties. Pepper the Buddhist monk’s computerized voice, for instance, may not carry the emotion that some people may seek. And some will perhaps see the machine as an undignified presence at a service steeped in tradition. Pepper, however, has yet to administer its first official funeral, so we’ll have to wait and see if it manages to fill such esteemed roles while maintaining a room’s expected decorum.
Everyone should have the right to high-quality palliative care when they have a terminal illness, regardless of their condition, where they live, or their personal circumstances. It’s commonly assumed that everyone with a terminal illness gets the care they need, however one in four people who need palliative care in Northern Ireland are not currently accessing it.
by Craig Harrison
Raising awareness of the issues
The problem can be particularly acute within the LGBT community, and last year, research commissioned by Marie Curie found that concerns around discrimination, stigma and invisibility can often cause LGBT people to access services late or not at all.
To explore these crucial issues, Marie Curie Northern Ireland held a policy seminar to raise awareness of the barriers faced by our LGBT community in accessing end of life care and what can be done to address them.
Held in Stormont, the home of the Northern Ireland Assembly, the event brought together a wide range of stakeholder groups, departmental officials, MLAs and health and social care representatives.
Championing compassion and understanding
Guests heard from Joan McEwan, Head of Policy and Public Affairs at Marie Curie Northern Ireland, as well as John O’Doherty, Director of local LGBT organisation the Rainbow Project . John discussed the needs of older LGBT people in health and social care, and said:
“Accessing care as an older person is something many of us do not consider we will need until it is upon us – particularly end of life care. This is a difficult time for everyone, but for many LGBT people, fears of homophobia and invisibility exacerbate an already distressing and difficult time.
“Ensuring services are accessible, safe and considerate of the specific needs of LGBT people means understanding their experiences, particularly the impact of homophobia, transphobia and marginalisation throughout their life.
“Marie Curie’s work in end of life care for LGBT people is imperative to ensuring that everyone living with terminal illness in our society can access care and support that is underpinned by compassion and understanding.”
“The assumption that we were not a couple”
Guests also heard from Dr Richard O’Leary, a retired university lecturer who was a full-time carer for his late partner Mervyn. Richard said:
“When we came to access end of life care as a same sex couple we were fearful of what we might encounter from service providers.
“My civil partner Mervyn was admitted to hospital many times and the assumption that we were not a couple was made at least once during every hospital stay. In the public ward in hospitals I was wary of showing affection to Mervyn because it was unclear whether the hospitals had a protocol to protect us if anyone objected to us being affectionate.
“In hospitals and hospices much of the emotional care of the dying is offloaded to the chaplaincy service. This can be problematic – with one chaplain telling me that they were ‘struggling with the issue’ of same sex relationships.
“Mervyn and I enjoyed 25 years of a committed, loving relationship until he died on 2 August 2013. After Mervyn’s death, there were people in my family and in my faith community who explicitly withheld from me the expression of condolence.
“Service providers should be aware of the disenfranchised grief and reduced social support that may be experienced by LGBT persons during bereavement. I’d like to thank Marie Curie for their pioneering research and leadership in the area of end of life care for LGBT people.”
Making good practice more widespread
The presentations made clear that there are pockets of good practice in end of life care provision for the LGBT community. Service providers and HSC professionals must now work together to take these examples and make them universal – to ensure LGBT people receive high-quality, person-centred care that acknowledges and supports them during terminal illness.