[O]n average 435 Australians die each day. Most will know they are at the end of their lives. Hopefully they had time to contemplate and achieve the “good death” we all seek. It’s possible to get a good death in Australia thanks to our excellent healthcare system – in 2015, our death-care was ranked second in the world.
We have an excellent but chaotic system. Knowing where to find help, what questions to ask, and deciding what you want to happen at the end of your life is important. But there are some myths about dying that perhaps unexpectedly harm the dying person and deserve scrutiny.
Myth 1: positive thinking can delay death
The first myth is that positive thinking cures or delays death. It doesn’t. The cultivation of specific emotions does not change the fact that death is a biological process, brought about by an accident, or disease processes that have reached a point of no return.
Fighting the good fight, remaining positive by not talking about end of life, or avoiding palliative care, have not been shown to extend life. Instead, positive thinking may silence those who wish to talk about their death in a realistic way, to express negative emotions, realise their time is limited and plan effectively for a good death or access palliative care early, which has actually been shown to extend life.
For those living closer to the prospect of death, being forced to manage their emotions is not just difficult but also unnecessary, and counterproductive to getting the help we know is important at the end of life.
Myth 2: dying at home means a good death
The second myth is dying at home always means a good death. While Australians prefer to die at home, most die in hospital. Managing a death at home requires substantial resources and coordination. Usually at least one resident carer is needed. This presents a problem. Currently 24% of Australians live alone and that’s predicted to grow to 27% by 2031. We also know many Australian families are geographically dispersed and cannot relocate to provide the intensive assistance required.
The role of the carer may be rewarding but it’s often hard work. We know timing of death is unpredictable, depending on the disease processes. Nurses, doctors and allied health professionals visit, problem solve and teach the carer to perform end-of-life care. They don’t move in, unless they’re hired in a private capacity; a possible but pricey alternative. Finally, specialist equipment is required. While this is usually possible, problems can arise if equipment is hired out for a specific time and the patient doesn’t die within that allotted time.
It’s not a failure to die in a hospital, and may be the best option for many Australians. While it would appear that large public or private hospitals may not be the best places to die, in many areas they provide excellent palliative care services. Appropriate end-of-life planning needs to take this into account.
Myth 3: pushing on with futile treatment can’t hurt
A window of opportunity exists to have a good death. Pushing on with treatment that has no benefit or is “futile” can be distressing for the patient, family and the doctors. Doctors are not obliged to offer futile treatment, but unfortunately patients or family may demand them because they don’t understand the impact.
There are cases where people have been resuscitated against better medical judgement because family members have become angry and insisted. The outcome is usually poor, with admission to the intensive care unit, and life support withdrawn at a later date. In these cases, we have merely intervened in the dying process, making it longer and more unpleasant than it needs to be. The window for a good death has passed. We are prolonging, not curing death and it can be unkind – not just for those sitting at the bedside.
The story of a good death is perhaps not as interesting as a terrible one. Yet there are many “good death” stories in Australia. There are likely to be many more if some of the myths that surround dying are better understood.
People who put off hospice care—in which attempts to cure a disease are usually stopped and replaced with treatments just for pain and suffering—might spend months in and out of hospitals, with their families struggling to take care of them. Hospice is specifically designed to address such issues with drugs and other interventions, which can increase patients’ quality of life toward the end of life.
“At some point, patients and their families and doctors realize that hospice is appropriate, but that happens perhaps later than it should,” says study author Thomas Michael Gill, M.D., a professor of medicine, epidemiology, and investigative medicine, and the Humana Foundation professor of geriatric medicine, at Yale University. “When folks are referred to hospice only in the last days of their life, it’s difficult to have a meaningful benefit.”
For nearly 16 years, Gill and a team of researchers from the School of Medicine at Yale University followed 754 people who were all over 70 years old when the study began. Even though more than 40 percent of the 562 patients who died during the study entered hospice care during the last year of their lives, the median time spent in hospice was less than two weeks.
Many of their most debilitating symptoms—including pain, nausea, depression, and shortness of breath—decreased substantially only after hospice began. That means many patients might have been suffering needlessly for months, says Diane Meier, M.D., the director of the Center to Advance Palliative Care and a professor of geriatrics and palliative medicine at The Mount Sinai Hospital.
Health crises, emergency-room visits, and hospitalizations can become routine toward the end of life, and “that is a very distressing and stressful experience for patients and family members,” says Meier. “Remaining in your own home [something hospice makes possible], a familiar place with familiar people, is safer and offers better quality of life.”
Here’s what you need to know about hospice care, and how to know when it’s time to begin considering it, for yourself or a loved one.
What Is Hospice Care?
Hospice is a type of end-of-life care where the focus shifts from medical interventions aimed at a cure to palliative care, in which comfort and support for patients and their families are the main goals. It generally includes medical and nursing care as well as counseling and social services.
Hospice has been covered by Medicare since 1982 (though it has become more widely used only recently).
To initiate the hospice benefit, two physicians (or other healthcare providers) have to certify that a patient is terminally ill with less than six months to live—something that can be difficult to predict in many cases, say Meier and Gill. Patients can and do leave hospice at any time, because their condition stabilizes, for example, or because they want to pursue curative treatments again. Hospice care can also be extended beyond six months.
“Many people are fearful that if they choose hospice, they won’t be able to return to mainstream medicine should they improve or new treatments become available—that’s not true,” says Meier. “Hospice is not a one-way street.”
And some evidence suggests that hospice patients actually live just as long or even longer than similarly ill patients who are not in hospice.
Yet the persistent misconceptions about hospice, says Gill, may be part of what keep people from seeking it out sooner.
When Is It the Right Time for Hospice?
For people with terminal conditions (which includes not only some cancers but also dementia, terminal heart disease, lung disease, frailty, and more), there should be an ongoing discussion taking place with their doctor about their goals and priorities, says Gill—ideally long before hospice is being broached.
“Often patients will say ‘I’m more interested in the quality rather than the quantity of my remaining life,’” he says, and that can help inform future discussions about end-of-life care.
But if you have not already discussed the possibility of hospice with a doctor, either for yourself or a loved one, there are two key signs that suggest it might be time to broach the topic for someone nearing the end of life, Meier says.
First, if a patient is having increasing difficulty taking care of themselves and struggling with basic tasks such as walking, getting out of a chair, bathing, dressing, and using the toilet, hospice care is designed to help with all of those things.
Second, symptoms such as severe pain, shortness of breath, hopelessness, depression, and profound fatigue are all treatable in hospice, says Meier. In fact, “most of them can be improved or eliminated,” she says.
In the end, “a patient’s trajectory is most important,” says Gill. “In terms of daily functioning, are they heading downhill as opposed to being relatively stable?”
These conversations can be difficult for patients, their families, and their doctors—which is why people often put them off until the last moment, sometimes sacrificing quality time at the end of life for dubious interventions or unnecessary hospitalization.
But the benefits to considering hospice care sooner are clear. A patient with terminal cancer, featured in a 2014 Consumer Reports article, called entering a hospice program—nearly nine months before he died—“one of the best things that’s happened to me in the last I don’t know how many years.”
“It’s challenging to have honest discussions with patients and families about death and the dying process,” says Gill. “But leaving the conversation until the very end makes it more difficult.”
Brought to you by Stop The Horror Stop The Horror is a five-minute short film that confronts viewers with a harrowing retelling of the true events surrounding one man’s traumatic death.
Kass Hall is a law student with a background in art and design; she lives with her husband and their pug called Elvis. She describes herself as a sister, a daughter, an aunty and a friend.
She has been living with cancer for 27 years.
“I’m getting good at defying the odds, but I’ll never be in remission,” Kass says. “I’ll always be under my oncologist and surgeon’s eagle eyes, and I know that each hurdle, big or small, is a hurdle closer to the finish line.”
Impending death is not the kind of thing you adjust to. Despite the number of times she’s come close, Kass, now 39, is frank about being scared. She is under no illusions about what dying is like — she has seen “many, many friends, from children to older people, dying slowly and painfully.”
“I’ve been in the room in the final moments of life, and though we do our best to make people ‘comfortable’, it’s a situation I do not want to find myself in — for my own sake and that of those who love me,” she says.
She hopes that finish line isn’t soon. But in the event that it is, she wants a say in drawing that line.
This is how Kass has come to be an advocate for voluntary assisted dying legislation — her experience leaves her pretty uniquely placed to clap back at people opposed to it. With new assisted dying legislation proposed in Victoria at the moment, now is a particularly pressing time to persuade people of the bill’s importance.
“I have always liked the idea that, when I reach ‘my line’, I could choose to end my own pain. Watching someone you love die is one of the worst experiences a human can endure, and I imagine being the person dying is even worse.”
It’s an experience explored in the recently released film, Stop The Horror. A graphic five-minute short directed by Justin Kurzel, the film tells the true story of a man who dies over a period of three weeks, exploring what he and his family are forced to deal with.
Getting Diagnosed
Kass’s first diagnosis was in 1990, when she was twelve. The kind of cancer she has is incredibly rare, and was hard to pin down for a long time — as she wryly puts it, “what they thought it was then is not what they think it is now”.
That first diagnosis led to surgery and chemotherapy. On five separate occasions, her parents were called to the hospital to say goodbye. And yet, against all odds, Kass survived, though not without complications. “At that time I lost part of my stomach and duodenum [the first section of the small intestine],” she says. “The chemo left me infertile and with a heart condition, though thankfully my heart has remained strong.”
These complications have been multiplying steadily ever since. In 2000, Kass lost a kidney. In 2008, her thyroid. In 2011, the cancer returned to her stomach and liver. It was only in 2012 that her doctors discovered she had a genetic defect that was causing the tumours to return.
That was the moment, Kass says, when realisation hit. “This disease was — barring the unforeseen — what would kill me”.
Here’s the cruel thing about this genetic defect: in addition to all but guaranteeing the cancer’s return, it makes Kass ineligible for an organ transplant. And while so far it’s been possible to combat the resurgence of tumours with surgery, she’s keenly aware that things can’t continue this way forever.
“There’s going to come a time where surgery is no longer an option, and that’s when I start the slow process of dying.”
“The idea of dying anytime soon is not one I am comfortable with,” she says, “but who is, though?” She’s coming up on her 40th birthday in January, a milestone her oncologist has been telling her for years would be a “great outcome”.
Why Voluntary Assisted Dying Legislation Matters
Assisted dying has always been controversial, often for reasons Kass is keen to see us move past. Concerns about younger people — not children, but adults in their late teens and early twenties — having access to the option of assisted dying are, to Kass’s mind, utterly dismissive of terminally ill young people’s experience.
“There is no difference in older people and younger people making this decision,” she says. “If anything, for younger people the decision is harder because we think about what we may miss out on — weddings, children, travel.”
Kass says arguments that say young people with terminal illness don’t have the necessary perspective or clarity to decide to end their lives “seek to debase a person’s autonomy and thought process.”
“It’s designed to second guess a person. No one has the right to do that. Anyone who said that to me would probably not like the response they get from me.”
As for those who argue that choosing to die is a selfish act, Kass says her response “probably isn’t fit to print”.
“What I can say is that what other people think is not my problem. They are not living my life, they’re not walking in my shoes. Everyone has an opinion, but my life deals in facts. What others think about my choices, especially if they’ve never experienced my situation, is of zero consequence to me”.
Some of the most legitimate and important critiques of voluntary assisted dying legislation, though, come from people who have experienced Kass’s situation, or situations like it. These campaigns are run by people with terminal illness or life-threatening disabilities who are concerned that assisted dying legislation will needlessly kill many people through a subtle combination of pressures. Things like, for example, the feeling of being a burden on close family or medical services.
These are arguments Kass is willing to engage on — she says she’s aware of and understands the campaign in question, but thinks the legislation proposed by the Victorian Government includes adequate safeguards, including a multi-step process she hopes will catch any instance of family or external pressure.
“To my mind,” she says, “that is why patient autonomy is the key. At the end of the day, what family members think and what their needs are is not what this is about — it is and should always be about the primary patient. If the primary patient has not requested and been through the voluntary assisted dying process, then it shouldn’t be available.”
“And any family member that puts any pressure on a person who is dealing with illness or disability should find the map to hell and go there. There are so many people in the disability community and those with long term illness who have so much to contribute and who are outstanding members of society. Having an illness or disability doesn’t diminish us as people.”
Reaching The Finish Line
In Kass’s case, she knows her husband will support her decision if she reaches her line. She hopes that won’t be soon — she wants to grow old with her husband, see her nieces and nephews grow up, have a full legal career. For the time being, she’s optimistic.
But even on good days, the line is there, and Kass says that when she hits it, she has “no hesitations” about what she’ll do.
“I have no interest in suffering unnecessarily,” she says. “It will be my decision.”
“I respect that this won’t be for everyone. I just feel that a choice for those of us who do seek to end our own suffering should be given to us. We all have our own paths in life, and should have as much choice made available to us as possible.”
Researchers say elderly people are in hospice care for an average of only 12 days. Why aren’t they admitted sooner?
by Gigen Mammoser
[H]ospice centers provide valuable end-of-life care for the elderly.
So, why aren’t more people using these centers?
The Medicare hospice benefit (MHB) was established in 1982 in order to give recipients access to high-quality care near the end of their lives.
But, new research in the Journal of the American Geriatrics Society states that those who utilize the service often do so too late.
The study included 562 individuals, all aged 70 and older with an average age of nearly 87 years.
Of these older adults, only 43 percent of them were admitted to hospice during their last year of life.
While hospice is available to individuals with six months or less to live, researchers found that for half of the study participants their duration of hospice care was less than 13 days.
The authors say underutilization of hospice care can create a burden for healthcare workers, and result in patient suffering.
Why don’t people utilize hospice?
The reason why hospice care isn’t used more frequently is complex.
According to statistics from 2000, only 23 percent of Medicare beneficiaries who died were in hospice care at the time.
The MHB was initially offered for those with end-stage cancer. However, more and people have begun seeking hospice care for noncancer-related ailments.
The problem is that other issues, such as frailty and dementia, may be harder to discern when determining an individual’s eligibility for hospice care.
“It is well documented that the prognostication [predictability] for those patients with a noncancer diagnosis is more difficult and is a complicating factor for physicians and others who refer patients to hospice care,” said John Mastrojohn, executive vice president and chief operating officer of the National Hospice and Palliative Care Organization (NHPCO).
Lead study author, Dr. Thomas Gill, a professor of medicine at Yale University, agreed.
“Cancer tends to have the most predictable course,” he told Healthline, “meaning it is generally easier to predict when someone with cancer is in the last six months of life than someone with another terminal condition.”
“The challenge is even greater for older persons since many die from a combination of different conditions and/or debility, none of which may meet criteria for hospice,” Gill added.
That gets even more problematic when you look further at the results of Gill’s research:
The most common conditions leading to death were frailty and organ failure, not cancer. However, hospice acceptance rates for frailty were the lowest, and for cancer the highest.
Waiting too long
Not only is care jeopardized by condition, but by duration of stay as well.
The median of 12.5 days spent in hospice indicates that even when individuals do utilize the MHB, it is at the last possible moment.
“A large proportion were admitted shortly before they died, which makes it difficult for hospice to optimize its benefits,” said Gill.
Hospice care offers a unique opportunity to individuals who are near death in that it is not intended to cure them.
It is strictly palliative, meaning it is meant to provide comfort and quality of life.
Benefits of hospice care, Mastrojohn told Healthline, include expert pain management, spiritual support, as well as social and physical activities, tailored to the individual.
Hospice also provides service to families through bereavement support to help them deal with the loss of a loved one.
“Hospice is a benefit delivered by clinicians who are expert in the care of those with serious, advanced illness,” said Mastrojohn. “It is my hope individuals would be more open to receiving hospice services so they can maximize the many benefits they need and deserve.”
Changing how hospice is viewed
While this new research helps to highlight the underutilization of hospice care, it does not provide crystal clear answers why.
However, the authors hope that their work will lead to better strategies for addressing those who need hospice care, and getting them enrolled sooner in a program, rather than waiting until the last moment.
But hospice care also represents a difficult dilemma for families, which may help explain why duration of stay is so low.
For some, putting a loved one in hospice care can sometimes be seen as a sign of defeat.
“Some patients and/or families might interpret hospice as ‘giving up,’ but this is clearly not the case,” said Gill.
[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.”
We’ve lost our way with death, says Kevin Toolis – but the Irish wake, where the living, the bereaved and the dead remain bound together, shows us the way things could be done
Kevin Toolis … ‘My father’s 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.’
[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.
Kevin’s father, Sonny Toolis.
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.
