Ian Shearer’s daughter, Jan, says she was surprised by his request for doctor-assisted death, but she realized that he was dying “a slow, painful” death.
Ian Shearer had had enough of the pain and wanted a quick, peaceful end, his life marred by multiple afflictions.
But the Vancouver man’s family says his last day alive became an excruciating ordeal after the Catholic-run hospital caring for him rebuffed his request for a doctor-assisted death, forcing him to transfer to another hospital.
The combination of the cross-town trip and inadequate pain control left Shearer, 87, in agony through most of his final hours, says daughter Jan Lackie.
“To hear him crying out, screaming … was just horrible,” said Lackie, breaking into tears as she recalled the day in late August. “That’s what keeps me from sleeping at night … I don’t want any other person to go through what he did.”
Shearer’s experience at St. Paul’s Hospital highlights one of the thorniest issues concerning assisted death: the decision of most faith-based — but taxpayer-funded — health-care facilities to play no part in a practice made legal by the Supreme Court of Canada and federal legislation.
Ian Shearer and daughter Jan Lackie.
Lackie said the suffering her father endured shows why it is important that church-governed facilities, including dozens of hospitals, nursing homes and hospices across Canada, be required to allow assisted deaths within their walls.
“We have nine judges who said ‘Yes’ to medical assistance in dying,” she said. “I don’t understand how the Vatican has so much power, even here in Canada.”
But the bill that implemented the Supreme Court’s ruling in June does not oblige any institution to permit the practice.
And Catholic health organizations say their objection to assisted death flows from deeply held beliefs, while noting there are numerous other, less contentious procedures available at some facilities but not others.
“Life is sacred and the dignity of the person is important,” said Michael Shea, president of the Catholic Health Alliance of Canada. “These organizations neither prolong dying nor hasten death, and that’s a pretty fundamental value for them.”
Shaf Hussain, a spokesman for Providence Health Care, which operates St. Paul’s, said he could not comment on Shearer’s case specifically. But under a policy finalized this summer, he said, the Catholic organization arranges to transfer patients as comfortably as possible when they express a desire for assisted death.
Even the medical assessment required under the law and the signing of consent forms must take place outside Providence properties.
“All feedback we take very seriously,” said Hussain. “We’ll be working with our partners in the health care system to ensure the patients’ needs do come first … and to minimize the discomfort and pain.”
Shearer, a retired accountant originally from Calgary, suffered from spinal stenosis – a narrowing of the spine that can put pressure on the spinal cord – heart disease, kidney failure and, toward the end, sepsis, said his daughter.
He spent about three weeks at St. Paul’s, the closest hospital to where he lived in Vancouver, said the Calgary woman. The spinal condition was so debilitating, “just to touch him, he would scream.”
Lackie said she was surprised by his request, but supportive, realizing that her father was dying “a slow, painful” death.
It would be days, however, before Shearer was transferred to Vancouver General, and on the designated date – Aug. 29 – the ambulance arrived more than three hours late, said the daughter.
The man’s dose of the pain drug fentanyl had been reduced to ensure he was lucid enough to consent to the assisted death, but as time wore on the pain grew worse, and there was a shortage of the narcotic on his ward, she said.
Already in agony, Shearer cried out desperately with each bump during the four-kilometre ambulance ride, said Lackie.
He eventually received the series of injections ending his life at Vancouver General, a “beautiful,” peaceful death, she said.
Jan Lackie holds father Ian Shearer’s hand on his last day, when a Catholic hospital’s refusal to consider his request for assisted death forced a painful transfer to another hospital.
Dr. Ellen Wiebe, a B.C. physician who has carried out several assisted deaths, provided the service for Shearer, one of three patients from St. Paul’s she has seen for the same reason.
To get around the hospital’s ban on patients even being assessed there, she said she makes “flower visits:” masquerading as a friend bringing a bouquet.
Assisted-death bans can not only lead to suffering during the transfer itself, but effectively deny patients the right in areas where there is no alternative to the faith-based institution, said Shanaaz Gokool, head of the group Dying with Dignity.
“This is going to be a real issue, and it’s going to be a real issue across the country.”
The facilities are causing vulnerable patients suffering because of a decision that benefits only the institution, argued Juliet Guichon, a bioethicist at the University of Calgary.
[A]fter almost 20 years of living with a pacemaker, Nina Adamowicz decided she no longer wanted the device that was keeping her alive.
It had been implanted in 1996, and for the first decade it ‘improved’ her life and symptoms — she had a form of hereditary heart disease.
The pacemaker sent regular electrical pulses to keep her heart beating steadily, and she was grateful for ‘being given extra time’, she later recalled.
However, she then had a heart attack and her health declined so that by 2014, her heart was working at just 10 per cent of its capacity.
Last year, Polish-born Ms Adamowicz, 71, who had lived in the UK for more than 30 years, revealed she wanted the pacemaker turned off, even though she knew it would lead to her death.
After almost 20 years of living with a pacemaker, Nina Adamowicz decided she no longer wanted the device that was keeping her alive
It was like being ‘in line for execution and being told “not yet”, she said in an interview for BBC Radio 4.
‘It’s not about “I want to die”, I’m dying,’ she added.
After a series of medical examinations and psychological tests to determine whether she understood what switching off her pacemaker would mean, doctors agreed, and last October Ms Adamowicz went into a local hospice with her family for the pacemaker to be turned off – a procedure that took 20 minutes.
She described her body as feeling heavy and she felt a little nauseated – but she also felt at peace, her family told the BBC.
She slept through the night, returned home in the morning and died that night.
Her case – thought to be the first of its kind in the UK – raises profound ethical issues about when it is right to turn off someone’s pacemaker, or indeed withdraw other medical treatment such as dialysis for kidney failure, if that’s what they want.
In fact the law itself is very clear on this point, according to Miriam Johnson, professor of palliative medicine at Hull York Medical School.
‘A mentally competent adult has the right to refuse medical treatment, whether it is turning off a pacemaker or stopping dialysis, even if that treatment is prolonging their life and withdrawing it will lead to their death,’ she says.
‘By turning off the device, the disease or illness will kill the person, not the doctor.’
However, some doctors feel it’s uncomfortably close to euthanasia — the difference is that euthanasia involves overriding Nature.
Some doctors feel that turning off a pacemaker is uncomfortably close to euthanasia — the difference is that euthanasia involves overriding Nature
‘The difficulty with a case like this is that when a patient is dependent on a pacemaker, there is a direct connection between withdrawing the treatment and them dying within the next few hours,’ adds Professor Johnson, explaining that doctors’ role after all is to protect the vulnerable.
Around 35,000 patients in the UK have a pacemaker fitted each year. The device’s role is to keep the heart beating steadily – it gives it a boost by delivering electrical impulses so that the heart contracts and produces a heartbeat.
The computerised match-box sized device is implanted just under the skin, usually just below the left shoulder and electrical leads are then fed down a vein into the heart.
‘In a significant number of pacemaker cases if you suddenly took the pacemaker away, the heart would stop beating,’ explains Dr Adam Fitzpatrick, a consultant cardiologist and electrophysiologist at Manchester Royal Infirmary and Alexandra Hospital, Cheadle.
He adds: ‘It is very unusual for a patient to ask for their pacemaker to be turned off.’
Even if the patient is dying, a pacemaker does not need to be switched off, says the British Heart Foundation.
‘A pacemaker’s purpose is not to restart the heart and it won’t cause discomfort to someone who’s dying,’ said a spokesperson for the British Heart Foundation
‘Its purpose is not to restart the heart and it won’t cause discomfort to someone who’s dying,’ said a spokesperson.
But the picture is slightly different with other heart devices such as Implantable cardioverter defibrillators (ICDs) which are used to correct an abnormal heart rhythm rather than helping the heart beat steadily.
These devices, implanted in around 9,000 people in the UK every year, kick in when an abnormal heart rhythm occurs which can cause sudden cardiac arrest (where the heart stops beating).
Implanted under the collarbone as a pacemaker is, they work by firing a small electric shock into the heart to kick-start it (some pacemakers have this function too).
This might happen once every few months or not even for years.
However, this can be both painful and traumatic, especially at the end of life, and can lead to a prolonged and distressing death by continuing to give electric shocks.
In one particularly upsetting case reported in a US medical journal, a man suffered 33 shocks as he lay dying in his wife’s arms — the ICD ‘got so hot that it burned through his skin’, his wife later reported.
Implantable cardioverter defibrillators work a bit differently from a pacemaker, as they are used to correct abnormal heart rhythm with an electrical current
‘Dying patients often have multi-organ failure which can cause metabolic and chemical changes that may trigger arrhythmias, faulty heart beats and in turn activate the ICD,’ explains Dr James Beattie, a consultant cardiologist at the Heart of England NHS Foundation Trust, Birmingham.
‘If the device goes off when the patient is conscious, the shock is like a blow to the chest, causing discomfort and distress. It may also fire repeatedly.
‘This may result in a distressing death for the patient and distress for the families.’
Yet despite this suffering, 60 per cent of hospice patients do not have their implant deactivated before death, according to U.S. research published in the Annals of Internal Medicine.
Furthermore, a 2011 survey by the National Council for Palliative Care suggested that only 40 per cent of UK hospices have access to the technology to deactivate the device urgently, potentially risking an undignified and painful death in hundreds of patients should they suddenly deteriorate.
Switching off the device involves holding a magnet over it, temporarily closing a magnetic switch incorporated in it.
To turn it off permanently the device has to then be reprogrammed remotely using a ‘wand’ attached to a computer.
Despite the risk of suffering, 60 per cent of hospice patients do not have their implant deactivated before death, according to U.S. research
Medical professionals and families face a number of dilemmas when deciding whether to turn off an ICD.
One is the difficulty in accurately predicting when the patient is reaching the end of their life.
‘Determining this isn’t always clear, especially with a condition such as heart failure when patients may have survived crises over many years,’ explains Professor Johnson.
‘This can be complicated further if the patient is suffering from dementia and unable to make decisions about their care.’
There is also an understandable reluctance by patients and their families to take away anything that can prolong life.
‘Patients and their families frequently think of the device as entirely beneficial,’ says Professor Johnson.
‘There is also often unrealistic expectation about what doctors are able to do to keep people alive.’
Many doctors shy away from these conversations, too. A 2008 report from the National Audit Office found a significant lack of confidence in handling end-of-life care across all medical specialities — with cardiologists topping the league.
‘Given they are trained to save lives, talking about death can be seen as professional defeat,’ says Dr Beattie.
But if patients and doctors don’t have that conversation ‘we’re storing up trouble because decisions then have to be made at times of crisis and without planning’, says Simon Chapman, of the National Council for Palliative Care.
New guidance for patients and medical staff to guide them through the ethical minefield of withdrawing heart devices was published earlier this year in the journal Heart.
Just how difficult making such decision can be was dramatically highlighted in the case of Fred Emery.
When his health suddenly went downhill six years ago, doctors recommended turning off the defibrillator that had been keeping him alive for the past 14 months.
When Fred Emery’s health suddenly went downhill six years ago, doctors recommended turning off the defibrillator that had been keeping him alive for the past 14 months
The 73-year-old former manual worker from Kings Langley, Hertfordshire, had had the matchbox-sized device implanted in his chest following a 26-year battle with heart disease.
During that time he’d had two heart attacks, and had already undergone two triple heart bypass operations as well as having several stents (tiny metal tubes) inserted to prevent his arteries blocking.
However, Fred then developed heart failure and ventricular tachycardia — a potentially fatal heart rhythm
Having a defibrillator not only helped with the heart failure, but also any sudden cardiac arrest triggered by the faulty heart rhythm.
But Fred’s condition deteriorated and doctors suggested that as he was nearing the end of his life, it was time to turn off this life-line — to spare him and his family the ordeal of it repeatedly jolting his heart back to life when his body had reached the natural moment of death.
However, despite doctors’ predictions, Fred pulled through and later had the defibrillator reactivated, and it went on to save his life several times before his death this year. His family was angry that doctors had written him off before his time.
Despite doctors’ predictions, Fred pulled through and later had the defibrillator reactivated, and it went on to save his life several times before his death this year
‘It was awful when they told him to turn it off,’ his wife Shirley, 70, told Good Health. ‘Fred was taken ill at 4pm, and by the next morning the defibrillator was turned off. It was too soon to make that decision — he wasn’t himself and was under pressure to switch it off.
‘After it was reactivated, Fred had six more years. Without the ICD we would have lost him several years ago.
‘He kept it on until a week before his death. By then his heart was working at 15 per cent, he was in a hospice and there was no coming back so we made a decision to turn it off to give him some dignity at the end. He knew what was happening.
“People told me stories about my dad, some made me cry and some made me laugh, I would be heartbroken if I thought that my laughing would indicate that I didn’t care.”
[G]rief is complex.
No one can explain grief to you and no one can tell you how to deal with it. You can speak to counselors, and read approved leaflets on dealing with losing someone and even they cannot tell you how the grief process will work.
So a newspaper certainly has no right to do so.
A well-known newspaper publication recently wrote an article about a young girl who went on a night out. If you’re looking for the news there’s a reason you can’t find it.
The young woman’s mother had died by suicide in a story that was covered in depth by the media, aside from that, this young girl is no different to anyone else who loses a parent.
The story detailed what she wore on the night out and tried to highlight that it was ‘just weeks’ after her mother’s death.
The tone of the story seemed to want to illustrate that there is an issue with the fact that she went out with her friends.
This was two months after her mother died.
A young girl went out with her friends two months after her mother passed away and a newspaper highlighted it as a news story.
This brings to light a very real problem in the media and even in the public when it comes to grief.
This is an example of grief shaming. That is, judging someone for the way they deal with losing someone close to them. Judging them for being too happy, or for attending events, or maintaining somewhat of a normal life on the outside.
No one can tell someone how to grieve. Even those who have suffered from grief can’t judge another person for not doing it in the same way.
Just because someone is seen to be enjoying themselves after a death doesn’t mean they are not sad, and even if they are not sad now, that does not mean that they won’t be at another time.
For many people, laughing, smiling and having fun is a coping mechanism. We are told ‘they would want you to be happy’ and ‘they would want you to enjoy yourself’ but are we judged by others for doing that?
During my dad’s wake, family and friends approached me to tell me stories about what a brilliant man he was, some made me cry and some made me laugh, I would be heartbroken if I thought that my laughing would indicate that I didn’t care.
I remember attending a birthday party about six weeks after he died. For me the more time that passed the harder it got, so a party seemed like something I could do to try and feel normal and to forget about it.
I enjoyed myself, I spoke to people I hadn’t seen in ages, and then, someone came up to me and said ‘sorry about your dad, Megan’. There and then I felt guilty for being there. It wasn’t her fault, she was being kind, but I brought it upon myself to feel guilty, which was obviously completely wrong.
However, if I went on the internet the next day and saw the article previously mentioned, I would have felt a million times worse.
I was thirteen, unlike the woman in the story above, I wasn’t old enough to hit the drink or head to a club, but I’m almost certain if it happened now I’d drink a few whiskeys, I don’t see that would mean that I did not miss my dad.
The newspaper headline purposely phrases ‘two months’ as ‘just weeks’ to make it somehow seem worse and more recent. Two months can fly by after death or it can drag on. But that’s not the point.
Even if it was two days, she had every right to do what she wanted to do.
Grief hit me, when my dad died, but only briefly, only the day of the burial, then it all turned into a weird dream and it wouldn’t hit me again for a few weeks. It comes in and out but never fades away completely. Even now, eight years later I have days that are harder than they were those two months after he died.
Should I still be sitting at home?
If we waited for grief to go away before we left the house, we would never step outside the door again.
The loss reminds us of love. That we loved, and that we were loved.
By Nivida Chandra
[G]rief is that which makes you feel like a giant void has been created inside of you. In its most awful form, it’s that feeling of having your most vital organs ripped out, and being commanded to live nonetheless.
Various “manuals” of grief will tell you more about how to feel when you’re grieving, including the famous five steps that you’ll go through, and also how long grief should last.
I lost my grandmother in June and some people have wondered openly how it’s still affecting me, three months later. I’m not offended, but it did surprise me enough to think about it. And so I began thinking about the expiration of grief.
The answer lies in understanding the difference between the end of our grief within, and end of grief as it appears to those around us. When thinking about presenting grief to others, I think of tears and rage. This is limited to the immediate aftermath of the loss.
As time passes, irrespective of whether we heal internally or not, the expectation is that the tears and rage transform into smiles and acceptance, supported by cliches on how life moves on. It’s almost as if, with time, we console others about how “fine” we are in the face of loss, and that they need not dig deep to find that right thing to say which will make us feel better.
I think this is because we all implicitly understand how uncomfortable people can feel in the face of someone else’s loss. This is not a good or bad thing, it just is.
While this discomfort is human and true, what is equally true is that it is compounded by a cultural dictation of quotas. People have quotas of how much of our grief they can and want to and should take. The “can” and “want” are prescribed by our personal relations and unique personalities
As time passes, irrespective of whether we heal internally or not, the expectation is that the tears and rage transform into smiles and acceptance.
But the “should” is culturally granted by an unsaid hierarchy of losses. We learn in society what is a big loss, a small loss, and how to respond to different losses.
For instance, parental death warrants more grief, and therefore more support, than grandparental death. And nothing is worse than your child’s death. Similarly, loss of marriage allows for more grief and subsequent condolences than, say, losing a job.
People keep these in mind when deciding how to console and for how long. Beyond that, they wonder, they question sanity, therapists are sought and so on. And I get that. I do. As people we like to be happy, and if something or someone is not being able to achieve that or is dampening our own, we try to correct that.
I get it. But personal grief doesn’t follow these cultural norms. It just goes on and on, till time repairs it or memory obscures it. It’s indefinite. For those viewing someone else’s grief, it passes and people heal, but from the inside, it just changes from open declaration to silent acceptance. It doesn’t end, it just morphs into something more comfortable for others to witness.
How can grief end? When we’re grieving an irreparable loss, we’re faced with finality. Ironic as this may sound, finality doesn’t end. Loss is always final, endless.
I realised today that this endlessness, this feeling of never again, makes me entirely helpless. I’m powerless. This feeling flows from me to the one who’s trying to console me, creating in them the same powerlessness.
Just as we’re powerless against our loss, they’re powerless against our grief. The consolers resort to jokes, to helpful cliches (this too shall pass) and they’re not wrong, neither are they cruel. They’re just insufficient and they will remain so.
So I keep it within (and then find myself writing about it, so not doing a very good job of keeping it within). I grieve in my dreams. I grieve in my memories. But it’s not always so dramatic. I grieve while driving too. Or while writing.
It just manifests in all these private spaces, that’s all. I think a part of us doesn’t want the grief to go away. Because that might delegtimise, within our own heart, how very important that loss was.
The loss reminds us of love. That we loved, and that we were loved.
So I know that when you’re grieving, like me, you too would like to know when the persistent vacuuming of your insides will end. But we’re grieving finality, and we’re grieving the loss of love.
And I think that it doesn’t really end. We’ll always grieve, but maybe we’ll grieve a little less each day, till the grief itself becomes a painless memory, which we can hold on to forever.
Marjorie Severance had lived 91 years, five months, and two weeks when, if you believe such things, she decided she could let herself die.
She had completed all of her funeral and memorial service plans. Her finances were set. “Gramma Marj,” as she was known to her many grandchildren and great-grandchildren, spent the last weeks of her life sprucing up her jewelry collection and choosing beneficiaries.
Her granddaughter, Jan Schultz, who was helping with the jewelry, was dragging her feet getting the two last rings fixed.
“I had a feeling that as soon as this was done, she’d be done,” Schultz recalled.
When a great-grandson visited her for supper at her assisted-living facility in Madison, Wis., earlier this month, Gramma Marj ushered him out early. The family laughed about it, but the next day she barely woke.
Schultz called Gramma Marj’s son in Texas and told him to get there fast. Then she told her grandmother that her son was on his way and would arrive the following day. Gramma Marj’s eyes stayed closed; she was alive but largely unresponsive.
The next day, her son arrived. She opened her eyes for him. And then, not long after, in the solitude of her room, Marjorie Severance passed away.
The question of whether Severance somehow prolonged her life will forever remain a mystery. But it is hardly a mystery that stands on its own.
Hospice and palliative care clinicians routinely see cases in which people who are nearing life’s end seem to will themselves to hold on until a certain point, after which time they let go.
And while some people hold on long enough to see a loved one, others seem to do the opposite, clinging to life until they are left alone.
Dr. Toby Campbell, an oncologist and palliative care specialist at the University of Wisconsin, Madison, said patients tend not to have a lot of control at the very end of their lives. But that doesn’t mean they don’t have any.
“People in end-of-life care wouldn’t bat an eye if you asked if they think people can, to a certain degree, control those final moments,” Campbell said. “We’d all say, ‘Well, yeah. Sure.’ But it’s inexplicable.”
If these well-timed deaths are anything but coincidental, medical scientists appear unlikely to be able to provide an explanation anytime soon. A body of scientific literature called “the will to live near death” explores questions at the fringe of this topic, but the research focuses more squarely on how one’s will to live might affect life expectancy.
When it comes to extending one’s life by hours, seemingly through sheer will, Campbell believes the dying “probably have some kind of hormonal stimulus that’s just a driver to keep them going. Then, when whatever event they were waiting for happens, the stimulus goes away, and there must be some kind of relaxing into it that then allows them to die.”
In one memorable experience, Campbell recalled three sisters who had gathered in the hospital room of their elderly mother after she’d suffered a stroke. One sister lived nearby and the others joined from out of town, holding vigil for several days.
The mother was unresponsive, and though her prognosis was grim, she wasn’t actively dying. “They were having really a lovely time bonding together, but then life was kind of moving on and in truth they were ready for mom to die,” Campbell said.
One morning, he told them that their mother might actually want to die — but not with them present. Some people deem the dying process too personal to share, while others don’t want to expose family members to the trauma of watching them go.
The sisters, Campbell said, ” immediately grabbed onto the idea, and right then, they said, ‘Mom, we’re going out for breakfast. We’ll be gone for two or three hours, and then we’re going to come back and see you. So if you need to be alone to do this, now’s a good time.’”
Campbell left the room. The sisters left soon after. Their mother died while they were gone.
“They were sad, of course,” he said. “But they felt like they had done right by her.”
Jan Schultz felt that way too. Her grandmother had worked her way from bank teller to vice president over a 40-year career in finance. She was a proud matriarch, both loving and deeply beloved. Schultz said it would have been out of character for Gramma Marj to die before her son arrived, and it would have been equally out of character for her to burden him or anyone else with the sight of her death.
So in retrospect, it was little surprise that when Gramma Marj’s son arrived, her condition noticeably changed.
“I could almost see a sense of calmness over her when he arrived,” Schultz said.
Gramma Marj opened her eyes for him. She heard him leave. And then, after he was gone, her heart went quiet.
DUST IN THE WIND: The Carolina Memorial Sanctuary is an 11-acre conservation burial ground where bodies are buried in biodegradable vessels. Above, a funeral takes place at CMS, which is also a conservation easement and North Carolina’s first conservation burial ground.
Spoiler alert: You’re going to die. You already know that, but how much preparation for the inevitable have you made?
Living in Buncombe County, we can expect to live for 79.2 years, according to the local Health & Human Services Department. In a county with a quarter-million people, about 2,315 pass annually, an average based on 11,579 deaths in the five-year period from 2008–12, per a study by the department. The top three causes of death during those five years was cancer (2,563), heart disease (2,513) and chronic lower respiratory disease (784).
Last year was harder on us, though: 3,564 people died in Buncombe, the deputy registrar reports.
About 19 percent of Buncombe’s residents are 65 or older, according to 2015 U.S. census data — or 48,103 elders among a total population of 253,178. Of course, 65 is by no means the beginning of the end, nor does death target only the aged. In the five-year period covered by the above-cited study, we lost 170 people between the ages of 20 and 39, and 1,356 people between the ages of 40 and 64. And in 2015, we lost 176 people between the ages of 15 and 44 and 648 people between the ages of 45 and 64.
Given the ubiquitous and unavoidable nature of death, it seems that it should be an event we’d all plan for. But is it?
No one can confidently say that he will be living tomorrow — Euripides
Societal attitudes, traditions and responses toward death vary, but death is, well, as old as life. Carol Motley, founder of Bury Me Naturally Coffins and Caskets, says the advent of the Civil War and the resulting new practice of embalming was a catalyst for what American society now recognizes as a traditional funeral. “Before the war, you would dig a hole and put a body in it. During the Civil War, embalming tents became common at battlegrounds. You could get shipped home and not stink. And that was appealing,” she notes wryly.
Josh Slocum, executive director of the Funeral Consumers Alliance, agrees that the so-called traditional funeral is a relatively new concept. “We have a really short historical memory, but when you look back into the 19th century, what we now call a traditional funeral — the chemical embalming; the public display at a commercial place of business; mass-manufactured caskets; the Cadillac hearse to the cemetery — it didn’t come along until the last quarter of the 19th century,” he says. “It was a commercially created tradition.”
The FCA is a national nonprofit focused on raising awareness about consumer and legal rights when dealing with the funeral industry. “Most Americans, your own family, just a short period of time ago, was having a funeral where the body was washed at home, laid out at your home, in a coffin built by a local woodworker or by somebody in the backyard,” Slocum says. “That was the conventional burial. Burial in a sheet or wood box is as old as human history.”
Death is just another path, one that we all must take — J. R. R. Tolkien
While many people aren’t intentional about addressing their death, it’s a topic worth exploring, says Caroline Yongue, executive director of the Center for End of Life Transition. The interfaith organization helps people make decisions and provide instructions regarding what happens to their body after death. “North Carolina law says loved ones can act as funeral directors, so it is possible to bypass the funeral industry completely. But you would need to be prepared for death, to be prepared for what it takes to handle it yourself,” Yongue says. And planning ahead is key. “We’ve defaulted to the funeral industry in the last several decades, so people aren’t aware that they have their own legal rights,” she continues, noting that after a loved one dies, it’s difficult to know what to do if end-of-life decisions aren’t made beforehand.
In many cases the deceased hadn’t been intentional about declaring wishes for their funeral and what they want to happen to their body, according to Yongue. Yet, there’s a comfort in not having to make those tough choices immediately after the last breath is declared: “A nurse or social worker walks in the room and asks, ‘Which funeral home do you want me to call?’ And the funeral home is called because that’s the path of least resistance.”
Motley concurs, saying that even those at the end of their path neglect the inevitable. “I can’t believe how many people are terminally ill, die and then we have to overnight a casket. Most of the time that’s what happens; you’re dealing with everything but the obvious,” she notes. “There’s not a place in our societal life where we address it. You have to make a concerted effort to do it. It’s not part of church, school, anything. And it should be. We should go ahead and fill out our death certificate.” You can get a death certificate in person, online or via mail, from the Buncombe County Register of Deeds.
Juanita Igo, a case manager with the Buncombe County Council on Aging, says she often sees that conversation placed on the back burner because of day-to-day stressors. “We work with people who don’t have enough resources to pay for their rent, their medication. … So sometimes just getting through the day is what they’re working on,” she notes.
Igo recommends using the Five Wishes document provided by the nonprofit Aging With Dignity. The document will help you determine what you want in regard to various aspects of medical and social preferences for the end of your life. “You’re taking people through a conversation that’s more natural to them, about what they want to have happen. Participants do have to get the form notarized, but it gets people thinking about those things and starts the conversation,” she says.
It’s not just the elderly who die, Igo adds. “It might be something that comes up suddenly, so it’s good to start the conversation.”
“Funeral planning has to be a family conversation, the same way we have conversations about where to go to college, how much it will cost and how we will pay for it,” says Slocum. He believes there is a distinctly American fear of death that keeps the subject irrationally inaccessible. “We don’t even like to say the word. If you look at the obituaries, and there’s 10 people in it, I bet you eight of them didn’t even die. They passed away, they went home to Jesus, but, by God, they didn’t die,” says Slocum.
The Rev. Ed Hillman, president of the FCA of Western North Carolina, also sees death as a taboo subject that needs to be brought into the light. “We don’t like to think about our own mortality. I think there’s an innate fear of death in all of us, and we think that somehow by talking about it, it will bring it about — which is not rational,” he says. Hillman points out that it’s everyone’s responsibility to have “the talk,” and that despite its uncomfortable nature, engaging the conversation can save anguish after a death. Unfortunately, “[not having the talk] can put our next of kin in a place where they have to guess what we want and end up spending resources that they might not even have in trying to figure out what a deceased person actually wanted,” he says. “The more detailed the plans, the less the next of kin has to guess about what the deceased person would want.”
Slocum says it also makes financial sense to determine your burial/cremation arrangements ahead of time. He urges people to approach this planning the same way they look for a car: Shop around. “Prices of funeral homes in the same city are wildly different. People don’t expect this. When you shop for a stereo, you’re shopping for a difference of price of about 35 percent; we don’t expect prices on the same model to range from $500 to $2,000. Not true at funeral homes,” he says. “You will find funeral homes, within driving distance of where you’re sitting right now, charging $1,000 for simple cremation and ones charging about $4,000 for that simple cremation.” The FCA of Western North Carolina compiles information about funeral costs in 14 counties. In Buncombe, the cost of cremation ranges from $895 to $4,460; and the cost of burial ranges from $1,495 to $6,940, with varying distances the funeral home will transport the body.
Slocum and Hillman make it clear that the FCA isn’t against the funeral industry. As Hillman notes, “The vast majority of funeral homes are really wonderful services for people, though every once in a while there are things people just do not need.” And Slocum adds that’s why the FCA’s mission is to educate consumers about their rights. “The Federal Trade Commission has the Funeral Rule that gives consumers important rights. You have the right to get quotes over the phone. Every funeral home you visit and talk about funeral arrangements with is required by law to hand you a printed, itemized price list at the beginning of the conversation,” he says. “Funeral homes are allowed to provide packages but they are not allowed to deny you itemized choices, and that’s one of the best ways to control funeral costs.”
Further, “Caskets, no matter what they’re made out of or how well they’re constructed, none of them will ‘protect or preserve your body.’ None of them will keep out air, water and dirt. None of them will keep you from decomposing,” Slocum notes. “There are caskets out there that are marketed as sealed and protective. And people of otherwise good sense can be misled. You’re going to be just as dead in a $10,000 casket as you are in a $2,500 cardboard box.”
As a well-spent day brings happy sleep, so life well-lived brings happy death — Leonardo da Vinci
But if a cardboard box is OK with you, there are ways to have a natural burial here in Western North Carolina. Yongue also runs the Carolina Memorial Sanctuary, an 11-acre plot of land that is the state’s first conservation burial ground. CMS has a conservation easement, and its burial techniques incorporate the chemical-free, unembalmed body, inside a biodegradable vessel, into the landscaping. “We all have a body, and it’s got to get recycled somehow. If we are conscientious about it, we can do it in a green way that has the least amount of impact on the planet,” she says. “Because we’ve got a lot of bodies on the planet.”
Yongue also doesn’t have anything bad to say about the funeral home industry. “Somebody’s got to deal with the bodies, but it’s incredibly expensive. And because people aren’t prepared, oftentimes they spend a lot more money than they would have if they had prepared for death,” she says. However, she knows unorthodox methods don’t always resonate. “Home funerals are not for everybody. Our hope is people become more informed about what their options are.”
Ultimately, Yongue believes, it’s about conveying postlife wishes, regardless of what those might be. Otherwise, she says, “It’s like going on a vacation, but you don’t plan for it. It would be like going to Europe, and the day of your trip arrives, you don’t have your passport, your luggage isn’t packed.”
Plus, a direct approach to death can have a positive effect on the living, Yongue posits. “If we walk around with death on our shoulder, we would be kinder, more compassionate, because everybody we see is going to die.”
When a loved one is critically ill, hearing that it’s time for hospice care can be devastating news. On top of the emotional upheaval of coping with a terminal illness, you may be unsure what hospice care really is — and believe it’s just an indication your loved one will likely pass away.
Yet the time your loved one spends in hospice care doesn’t have to be sad — for anyone. In fact, says Toni Norman, the senior director of hospice operations for Brookdale Senior Living, hospice can be a deeply rewarding time of great comfort for patients and their families.
“Hospice care is not about waiting for someone to die, and that’s unfortunately a very common misconception,” Norman says. “The goal of hospice is to provide to a patient, who has a life-limiting illness, the physical comfort and medical care they need to stay in their home for as long as possible, while at the same time supporting their caregivers. The hospice team helps families by educating, supporting and identifying any needs they have, ranging from chaplain support to finding mortuaries and veteran benefits.”
The decision to begin hospice care is a communal one, with the patient, caregivers, loved ones and medical professionals contributing to the dialogue. “A terminal diagnosis from a doctor usually begins the process of seeking hospice care,” Norman says. “Also, as a family member’s health begins to decline due to illness, conversations about end-of-life care are proactive and compassionate.”
Brookdale Senior Living’s hospice care providers often encounter common misconceptions about hospice care. Norman offers the truth behind some mistaken beliefs:
* Hospice is for the last few weeks of life. The hospice Medicare benefit is for the last six months, if the disease follows its normal course.“Most people who enter hospice have done so because they’ve received a diagnosis of a life-limiting illness,” Norman says. “But people who enter hospice often live longer, and with a better quality of life, than terminally ill people who do not go into hospice. Many are even able to come off hospice service if their condition improves.”
* Hospice means giving up. Hospice is actually a commitment to a high level of care for a loved one. “It means making them as comfortable and safe as possible so they may enjoy time with their loved ones for as long as possible,” Norman says.
* Patients are heavily medicated. Patients receive medication under strict physician guidelines, and caregivers closely monitor comfort care protocols so each patient’s pain and symptoms are uniquely managed.
* Hospice patients can no longer see their doctors. Patients can continue to see any of their previous doctors. Rather than taking anything away, hospice adds a layer of medical support.
* Hospice care ends when a patient dies. Because hospice cares for the patient’s caregivers and loved ones as well as the patient, hospice team members continue their support for 13 months after the patient passes away. The hospice team provides grief support for the families and will continue to work with them to address any lingering questions, and to help identify their needs.
“The hospice team is comprised of the assigned physician and nurses to provide the direct medical care to the patient, while a chaplain, social worker and bereavement counselor provide additional support and education to families and caregivers,” Norman says.
Hospice ideally occurs in a patient’s home, whether that’s a personal residence or assisted living community. It is a Medicare-reimbursed benefit, and most private insurance providers do also cover some hospice costs.
“End-of-life care isn’t just about taking pain medications to relieve symptoms until death,” Norman says. “It helps people gain emotional strength and carry on with daily life, while improving the quality of life. The goal is to help patients and their families make every remaining moment as comfortable and enriching as possible.”
