06/25/17

End-of-life care: when CPR is wrong

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Pursuing treatment a person has declined represents questionable ethical practice

CPR is the appropriate response when someone has a cardiac arrest, but it has no role in the patient who slips away naturally at the end of a long illness.

The modern intensive care unit offers a wide range of life support mechanisms so that even the sickest person with multi-organ failure can be kept alive. Parallel to this, the media, and television in particular, has removed any veil of secrecy that may have existed about emergency and intensive care medicine. But it may also have raised expectations to an unreasonable level, with evidence to show that the public perception of the role of cardiopulmonary resuscitation (CPR) is not a realistic one.

The inappropriate use of CPR in certain end-of-life situations has been highlighted recently in medical literature. CPR is the appropriate response when someone has a cardiac arrest. However it has no role in the patient who slips away naturally at the end of a long illness. Senior clinicians have expressed concern that doctors who are called at the time of death feel they have no authority to withhold CPR, or they fear the legal risks of doing so – even where CPR is clearly pointless. As a result, patients with terminal cancer or end stage dementia are being vigorously resuscitated rather than allowed to die naturally.

However, this newspaper has uncovered another questionable aspect of end-of-life care. Responding to recent column, readers have described how patients who had clearly and formally indicated they did not wish to be resuscitated were in fact given CPR. In most cases, the treatment failed, but relatives are being traumatised – firstly by having their concerns pushed aside and then seeing their loved one’s body bruised and broken as a result of vigorous CPR.

In some cases this is happening despite having properly drawn-up advanced care directives present in the patient’s chart. In addition, many charts have DNACPR (do not attempt CPR) stickers prominently displayed on their front covers.

Whatever about the legality of ignoring a patient’s wishes in this way, pursuing treatment the person has declined represents questionable ethical professional practice. Healthcare regulators must take steps to address this breach of trust as a matter of urgency.

Complete Article HERE!

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06/23/17

I’m Dying Up Here: Books on How to Grieve and How to Die

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I’m never going to die. I’m sorry I can’t say the same for you. My role models for how to do death are Jesus and Wile E. Coyote. Yours are other dead people. However, because I’m never going to die, I’m super comfortable with the entire topic, and the fact that I’m late turning in this column on books about death and dying has nothing to do with avoiding the subject.

So an author who suggests the dead are not howling in the abyss but rather hanging out in what she imagines as a pretty “waiting area” — well, that’s an author who’s easy for me to love. Theresa Caputo’s television show, “Long Island Medium,” has been a mainstay on TLC, and in GOOD GRIEF: Heal Your Soul, Honor Your Loved Ones, and Learn to Live Again (Atria, $25.99), Caputo (with her co-writer, Kristina Grish) wants us to know what she has learned from all those years of channeling the dead: “It’s their greatest hope that you learn to heal and carry on.” The dead — or Spirit, as she calls them — are quite chatty and opinionated. Among the things Spirit wants you to know:

Your relationship with your loved one isn’t over; it has merely changed. (Even if the loved one can’t drive you to the airport, if you ask nicely Spirit might “help you get a cab.”) You can let your feelings rule you for short periods of time, but “you must also take active steps to heal.” (Spirit doesn’t like whiners.) When it’s your time, it’s (usually) your time, or at least in the “destiny window” of time. Caputo has a host of practical, rather adorable ideas for honoring Spirit, which often involve giving gifts to others in Spirit’s name.

After a while it occurred to me that if the departed behaved in the loving way Caputo describes, I would like them more when they were dead than when they were alive. No matter; I am entirely agnostic, and still found this book comforting and quite touching. I felt oddly close to my own dead parents as I read along.

Those whose loss is more recent may prefer a less warm and fuzzy approach — more of a “what can I do to get on with my life right now?” book. Resilience is a hot topic these days, and Lucy Hone has written a book about bereavement reflecting both her own research and her own grief. RESILIENT GRIEVING: Finding Strength and Embracing Life After a Loss That Changes Everything (The Experiment, paper, $15.95) begins with Hone’s own tragedy: In 2014, her 12-year-old daughter was killed in a car accident. Hone shows us how to harness the (thankfully common) power of our own resilience to work our way through a horrible loss.

Resilience is not a shield against suffering, Hone suggests. It enables us to feel and to move through emotions like pain and guilt so that we can continue to feel alive and experience happiness. Hone does not buy into the idea that you just feel your feelings and take all the time in the world; what if, like Hone herself, you have other kids at home, a demanding job, and an urgent need to function in the real world? Hone offers concrete strategies for regaining your equilibrium even in the greatest pain. Among them: Choosing where to focus your attention (not on hating someone or something, which consumes energy); taking your time with the body of the one you love (there is no mad rush to bury or memorialize beloved); and re-establish routines, particularly if you have children, who may need that structure even more than you do.

Despite her insistence to the contrary, there is a strong whiff of “just-get-on-with-it” matter-of-factness that may be a little beyond some of us. Patrick O’Malley’s GETTING GRIEF RIGHT: Finding Your Story of Love in the Sorrow of Loss (Sounds True, paper, $16.95), co-written by Tim Madigan, is for those of us made of less stern stuff. O’Malley was trained as a counselor, but when he lost his infant son, and he tried to work through the famous Kübler-Ross stages of grieving — denial, anger, bargaining, depression, and finally acceptance — he felt like a failure. Grief was not linear; it was more of an oscillation. O’Malley wanted to talk about his son, to tell others who his son was, even in the few months he was on this earth. He began to see the wisdom of the writer Isak Dinesen, who noted, “All sorrows can be borne if you put them in a story or tell a story about them.”

O’Malley gives us the tools to tell the story of the deceased: favorite memories, when he or she was happiest and saddest, how you learned about the death, and so forth. Different kinds of loss bring different stories, and different kinds of pain. Telling the story of how you loved and how you lost gives shape and meaning to what first seems to be a meaningless, uncontrollable event.

For a compelling argument for why we have to rethink the wisdom of end-of-life “heroics,” there is EXTREME MEASURES: Finding a Better Path to the End of Life (Avery, $27). The author, Jessica Nutik Zitter, is a physician who specializes in both critical care medicine and palliative care, the yin and yang of medicine. Critical care specialists are taught to save lives with all the technology and machinery at their disposal. Palliative care specialists need the opposite skill set: They have to know how to help a dying person let go. Zitter is trained in both.

Of course, it was not always thus. Dr. Zitter describes her first Code Blue as a resident. She rushes into the room to heroically save the patient, and instead she is asked to resuscitate someone who is clearly dead, or should be. “With each compression, there is a sickening click, which I don’t recognize until I hear someone next to me whisper, ‘His whole chest is breaking,’” she writes. “This man is dead.”

The patient stays dead. But in that moment Zitter realizes that there must be a better way to depart this earth. She also discusses how palliative care can respond to many of the most painful symptoms of dying in a way that care geared toward prolonging life cannot. And why, at the end of life, less is often more compassionate. Like Atul Gawande’s “Being Mortal,” Zitter’s book shows how knowing when to do nothing is as vital to being a good doctor as knowing when to do everything.

As compared to the more philosophical “Extreme Measures,” John Abraham’s HOW TO GET THE DEATH YOU WANT: A Practical and Moral Guide (Upper Access, paper, $14.95) is exactly as nuts and bolts as it sounds. Abraham, a thanatologist and Episcopal priest, writes extensively about advance directives and how to ensure your wishes are abided by; and then, he tells us the least painful and messy ways to go. It may not be easy to read about these methods, but they affirm the idea expressed by a popular button worn by Abraham and other members of the Final Exit Network — “Let me die like a dog” — because anyone who has ever had to euthanize a beloved pet knows how painless and peaceful death can be. Those of us who fear loss of control of our lives more than we fear death will find Abraham’s book edifying. I even appreciate the phrase he uses instead of assisted suicide; he prefers “deliberate life completion.”

Knowing Nina Riggs died shortly after writing THE BRIGHT HOUR: A Memoir of Living and Dying (Simon & Schuster, $25), the story of her experience with metastatic breast cancer, makes this moving and often very funny memoir almost unbearable to read. But that’s because it is not one bromide after the other. It is true, and it might crush you. There is one moment here that says everything about how lonely you can feel when you’ve been told you have a disease. It’s past midnight, and Riggs and her husband are lying in bed: “‘I just can’t wait for things to get back to normal,’ says John from his side of the moon.” Riggs realizes there may not be a “normal” anymore, and reacts with anger, and a growing resolve that we all wish we could achieve: “Thinking that way kind of invalidates my whole life right now. I have to love these days in the same way I love any other.”

I’ll just say this: You can read a multitude of books about how to die, but Riggs, a dying woman, will show you how to live.

Complete Article HERE!

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06/22/17

The truth is that death and life are the same music

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The terrain of dying is so swampy, too. We’re afraid of getting drawn into the quicksand of offence and emotion.

By Hilary Harper

A friend talked to me recently about his wife’s dying. Not her death, though it’s close, but the process of her dying, which has been going on for years and has undergone many changes. They have four children, and it is hard. It’s cancer, and it’s not being kind. It has metastasised into her brain, affecting her memory. She can’t walk more than a few metres. It stills her hands when she wants to draw or play music. But what made his tears well up was not the hard things, but what they were learning as her dying unfolded.

“It’s …” he hesitated. “It’s beautiful.” He seemed surprised, as if he ought to be ashamed of saying something so antithetical to how people imagine dying is. We think it’s dark and ugly; embarrassing, like poverty or bad breath. It’s inescapably physical: you can’t buy your way out of it or network yourself away from it or neutralise it with intellect. It’s not aspirational. It’s the ultimate failure, the inability to hold onto something most of us take for granted every time we inhale.

The terrain of dying is so swampy, too. We’re afraid of getting drawn into the quicksand of offence and emotion. What if we say the wrong thing? What if we accidentally tell the truth about something it might be kinder to lie about, at the end? I lost two babies mid-pregnancy, and after that, something fell away from me, some weight about death. Now I feel like a strange emotional carrion crow, settling my wings next to the grieving or bereaved, comfortable in the miasma of sadness and loss. I’m much better at listening. I was happy to talk to my friend about his wife’s dying, because he wanted to talk about it, and because it is a beautiful story, but also because it calls out to my grief, which has softened but not diminished.

He still works a few days, and he’s organised a roster of friends and neighbours who make sure his wife is OK and has everything she needs within arm’s reach. The kids spend a lot of time at home, experiencing their mother’s long last days. Part of his wonder and gratitude come from the fact that the family is sharing their experience. My friend knows that people who care are there when he can’t be, and that life, in some sense, is going on. Music is being played, and heard.

And the rest of the joy I saw sprang from his sense that his wife was stripping back the unnecessary things from life, the pettinesses and distractions, and becoming more prepared for death. She was remembering old arguments and tensions, wondering why she’d ever thought them worth the effort, and letting them go. “It’s like we’re falling in love all over again,” he said. It’s tempting to think of this as a parable for death being able to renew life, to spark a fresh fire of living even in those close to it. But the truth is that death and life are the same music, played for the same ears, but heard differently depending where you’re sitting. Some only hear the tuning up. My friend and his wife are hearing the whole orchestra, swelling to the climax.

Complete Article HERE!

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06/19/17

This Nursing Professor Is On a Quest to Improve End-of-Life Care, Worldwide

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Nursing professor Cathy Campbell aims to expand palliative care practices in places around the world where it’s existed only informally.

By Christine Phelan Kueter

Each week, as she sits at the bedside of dying patients, University of Virginia nursing professor Cathy Campbell remembers the bad old days of end-of-life care during her early nursing practice in the mid-1980s.

Staff didn’t know how to treat patients, their bodies addled by pain and disease, and treatment had less to do with pain management than with beating back deadly illnesses, she recalled. Even for patients who were moments from passing away, there was great reluctance to offer relief with drugs like morphine and Demerol, so as not “to hasten death.” But death in hospital intensive care units, with wires and tubes snaking from patients’ every orifice, was painfully common.

“There was always this great tension between compassionate care and the cure, the cure, the cure,” said Campbell, recollecting her early years as a nurse in a Florida Veterans Administration hospital, “and at that point palliative care wasn’t very good, and the things we did to patients weren’t very good for them, either.”

While the memories still smart, Campbell’s relieved when she considers the expanse of modern palliative care, and the growing understanding that “there is such a thing as a good death.”

But drugs and technologies aside, palliative care remains rooted in compassionate presence. That might mean that light chit-chat, passing ice to the bedridden, or quietly holding a griever’s hand. It also might mean answering loved ones’ frank and probing questions – What does death look like? How do you know if he’s in pain? Does she know we’re here at all? – or recommending medication adjustments for pain, based upon observed distress.

Many times, though, Campbell’s just there, palms up, offering herself as a witness and a comfort.

“This is what I want to do, where I want to be,” said Campbell, a nurse for 31 years and a palliative care scholar for 25. “The day of death is one day, but there are a lot of other days to provide support in between.”

But if palliative care has more recently expanded into America’s consciousness, beyond our borders its practice is spotty at best, and absent at worse. That absence is felt most acutely in the world’s poorest, most rural regions where chronic illness and death from diseases like HIV and AIDs, malaria and tuberculosis are common.

In many areas, palliative care is anemic due to too few providers. In South Africa, for instance, the patient-nurse ratio is 417-to-1, a reality that pushes many tasks onto community health workers who provide the majority of rural patients’ care. Among those workers – local individuals, some trained, who do home visits and provide a conduit to nurses in charge of vast geographic territories and literally thousands of patients – palliative care knowledge is even less common.

Most community health workers have basic training in bathing and turning bed-ridden patients; perhaps know how to take vital signs, like blood pressure and pulse; and may, too, know something about vectors of disease transmission for some of the region’s most deadly diseases, including tuberculosis and HIV. But palliative care, Campbell said, is “learned on the fly,” even as it’s an increasingly robust part of their job.

Those gaps in knowledge are due to the fact that palliative care concepts haven’t become fully integrated into overseas’ nursing curricula. It all adds up to a perfect storm, Campbell said, even in this era when the World Health Organization has declared access to palliative care “a human right.”

Given these twin realities, Campbell said, a movement to buttress community health workers’ education, skills and reach is afoot, and Campbell is in the thick of the march. She just received a two-year Fulbright Scholarship to augment the bare-bones understanding of palliative care as it exists in two rural provinces of South Africa and Thailand, and how best to broaden it with the support of community health workers.

Campbell’s years of work as a faculty mentor and researcher at UVA’s Center for Global Health have provided invaluable insight into the many issues and tremendous potential of community health workers in rural communities. This summer, Campbell will mentor a team, in collaboration with colleagues at the University of Venda, of Center for Global Health University Scholars for a fourth year of longitudinal research on community health worker engagement in community care.

With the Fulbright, Campbell and her UVA research assistants will conduct focus groups with 60 rural community health workers across Thailand and South Africa to discuss the cases they see and document how they handle them, in order to determine what types of educational and training programs make the most sense. Their ultimate aim is to expand palliative care practices in places where it’s existed only informally.

Campbell has already observed community health workers’ appetite for training in palliative care in particular – “they’re eager for it,” she reports – and in many cases, the most experienced and seasoned workerss are likely to receive training and education and then return to their peers to train them.

Community health workers, Campbell said, are the linchpin to expanding developing nations’ palliative care reach into the rural communities that need it.

“We can train CHWs to do more, because they’re really the ones doing the work,” Campbell said. “They’re a community treasure.”

Complete Article HERE!

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06/17/17

The things dying people care about reveal a lot about how to live

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In the end, only one thing matters.

By Corinne Purtill

Ask people to imagine what they’d say if they knew they were dying and most would have words of sadness, fear, and regret. But new psychological research bolsters what chaplains, hospice workers, and others who spend a lot of time in the company of those approaching the end of life have long known: the process of dying is a complicated one, with room for moments of profundity and light alongside fear and darkness.

In a series of experiments documented in the journal Psychological Science, researchers compared the blog posts of terminally ill people and the last words of death row inmates to the words of healthy people asked to imagine themselves writing near their death.

The people actually approaching death used more positive terms and fewer negative ones to describe their emotions than those imagining the experience. In the blog posts—all from real people who eventually died from their disease—emotions grew more positive as death approached.

It’s not a perfect study—people with unspeakable regrets or fears may be less inclined to publicly chronicle their final days than those who do not. But there are a few reasons why death may be more terrifying as a distant abstract than an immediate reality.

People tend to overlook or discount the psyche’s ability to adapt to new circumstances when imagining the future, according to research from the Harvard University psychologist Daniel Gilbert. Because we don’t properly account for our own resilience when envisioning future calamities, we tend to think that we’ll feel sadder, for longer, than we actually do.

Even amid the trauma of a terminal diagnosis and the discomforts of the dying process, the mind can adapt to find pleasure in the comforts available. And when we believe we have less time to live, whether due to age, illness, or external threat, we subconsciously adjust our priorities to favor those things closest to home. Research has found that old people, young people with serious diagnoses, and people living in uncertain political climates vastly prefer time with old friends and family over new contacts and experiences. The depth of these connections bring meaning to the final days of life in a way that can be hard for healthy people in an externally-focused, future-oriented mindset to comprehend.

It’s inaccurate to portray the close of life as a universally positive or peaceful experience. “We die the way we have lived,” says Barbara Karnes, a hospice nurse who has written extensively on the dying process. “I think it is human nature to look for love, connection, and meaning. We don’t necessarily have to be dying to do that. Dying gives us the opportunity, the gift of time, to reach out, but many do not take that opportunity.”

Death focuses us on what we care about most. But we don’t have to wait until the end is imminent to live as if each day matters.

“If there is any great difference between the people who know they are dying and the rest of us, it’s this: They know they’re running out of time,” Kerry Egan, a Harvard Divinity School-trained hospital chaplain, writes in her book On Living. “They have more motivation to do the things they want to do, and to become the person they want to become…. There’s nothing stopping you from acting with the same urgency the dying feel.”

Complete Article HERE!

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06/13/17

What will your last words be?

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Legacy therapy helps dying patients tell their stories

Storytelling can help terminally ill patients find closure. Linda Johnson and Brandi Snider share stories at Hinds Hospice in Fresno​.

Maureen Cleveland inhaled deeply as she recalled the scent of the fresh tomatoes that her father brought home each summer from the cannery where he worked. The thin 60-year-old woman, who’s battling late-stage breast cancer, talked for an hour in her Carmichael home, smiling almost constantly as she described picnic days with her family of seven and other scenes from her Bay Area childhood.

Visiting hospice chaplain Connie Johnstone listened intently from the foot of the bed, egging Cleveland on with questions and scribbling down the occasional quote.

Johnstone, who works for Kaiser Permanente in Sacramento, has studied the art of conversing with the dying. She calls it life review; others in her field call it legacy therapy or dignity therapy. The point is coaxing out a patient’s most intimate memories and threading them into one last story, often to be recorded for family and friends. For aging baby boomers and others struggling with terminal illnesses, the therapy offers a new way to ease the pain of facing death.

“It’s a real important thing to have a witness to one’s life toward the end,” Johnstone said in her slow, Southwestern drawl. “It’s to have it confirmed to us. If we say it, and we get to look at it again, it gives it substance, space, importance.”

Dignity therapy has gained traction in recent years as hospitals, hospice organizations and palliative care centers look for drug-free ways to pacify patients. It involves multiple 30- to 60-minute question-and-answer sessions, usually conducted by a psychologist, social worker or trained chaplain.

Dr. Nathan Fairman, a UC Davis palliative care psychiatrist who has written about interventions for the dying, said life review stands out from other types of talk therapy because it produces a concrete document that helps the patient reflect and find closure.

“The therapist draws out the parts of their story that have to do with meaning and purpose and relationships so that they can leave the legacy they want,” he said. “You’re looking for the themes that will focus the patient’s attention on the sources of meaning in their life.”

Surrounded by books and photographs in her house, Cleveland spends her remaining days reading, taking in sun from the backyard, watching her young nieces play and telling stories to whoever will listen, she said.

“I’m pretty social, so anyone who walks in here gets stuck talking to me,” Cleveland said during a recent visit. “You need to share what you know, or it’ll disappear.”

Johnstone chooses her questions wisely, often revisiting themes from previous sessions. She remembers little details about her patients’ lives — where they were born, how many children they have, their mothers’ names and occupations. The small talk helps her segue into more difficult topics, such as estranged family members or traumatic experiences.

While it’s usually too late for righting wrongs or seizing missed opportunities, speaking to a stranger can help patients accept the past and feel a sense of calm near the end, Johnstone said.

“Everybody carries some kind of regrets,” she said. “You can’t put the genie back in the bottle. Once you’ve brought something out, it can’t keep recycling in the same way.”

Many patients feel isolated toward the end of life, and are reluctant to lean on loved ones for help, Fairman said. Between 15 and 20 percent of terminally ill patients are diagnosed with major depression, according to the American Psychological Association.

In a clinical trial of 100 terminally ill patients who received dignity therapy, 68 said they felt an increased sense of purpose after the treatment and 47 said it increased their will to live. Eighty-one patients said the intervention was helpful to their families.

“They feel if they share too much with loved ones it will burden them, so they withhold sharing things,” Fairman said. “In a situation like that, it can be really helpful to have someone who is trained in really good listening skills, who can tolerate the suffering people experience when they get close to the end of life.”

Cleveland, who does not have children, hasn’t worked out exactly how she wants to be remembered yet, but with Johnstone’s help she’s piecing it together. During a recent session she brought up a story she hadn’t told in years — one that took place at a school lunch table, some time in the late 1960s.

“There was this family in the neighborhood and they were poor, and they had nothing to eat but ketchup soup,” she said. “I couldn’t believe it. So I shared some of my lunch with them. It was how we were raised. If someone needed something, that was it. You didn’t say no.”

Many years later, Cleveland became a representative for a produce packing company, regularly visiting Central Valley orchards to take inventory and question the farmers about workers’ living conditions.

“They were living in the worst slums you’ve ever seen,” Cleveland said. “I always got in trouble for asking about that, but I kept asking anyway.”

Johnstone kept scribbling. Cleveland explained how her career was interrupted by a Hodgkin’s lymphoma diagnosis in her 20s, and how she spent years as a caregiver for a sick sister, mother and aunt.

During the next session, the pair will paint a cover for Cleveland’s written story. The title word, they’ve decided, is Survivor.”

“I’m seeing a connection here,” Johnstone said. “I think this is a source of a lot of your resilience.”

Technology has helped spread storytelling as a form of healing. StoryCorps, a nonprofit podcast network, launched its legacy initiative in 2010 to focus on people with serious illnesses. They visit hospitals and clinics throughout the U.S. to train providers on how to capture end-of-life conversations on cell phones. In California, the legacy project partners with Hinds Hospice in Fresno and the Zen Hospice Project at the University of California, San Francisco.

Perri Chinalai, director of community training for StoryCorps, said she believes storytelling helps build a bridge between patients and physicians that can ultimately improve care.

“This is an opportunity for people to talk about themselves outside of their diagnosis,” she said. “It allows for a more holistic understanding of who people are. … It could create a culture of storytelling that enhances the services.”

At Hinds Hospice, storytelling sessions are offered to all visitors, said community outreach liaison Jill McCarthy. Staff can conduct the interview sessions and use the StoryCorps app to archive stories in the Library of Congress’s American Folk Life Center.

Over the years, McCarthy and her staff have heard incredible stories, she said. She remembers an elderly pilot who described one of his first flights over Alaska, as well as an indigenous California man who wanted to record himself speaking in his native Mono language. But mostly, she works with families who just want to get to know a loved one better.

“If the person dies before they get to share their story, those stories go with them,” McCarthy said. “It’s a chance for families to talk about things they’ve never talked about before, to express what they mean to one another. They don’t have to be these grandiose things. It’s the little things that for generations have been handed down.”

Complete Article HERE!

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06/12/17

Dying at home: What I learned from my husband’s death

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Dr. Donald Low, centre, confers in the lab at the Ministry of Health and Long-Term Care about the results of the Legionella outbreak at Seven Oaks Home for the Aged in 2005.

By

The night my husband died, I slept beside his corpse in our bed. All night. This wasn’t exactly by choice: the funeral home did not retrieve bodies after 8 p.m., and there was no other bed available for me to sleep in, as all our children were home to help care for their father.

I tell this story whenever I discuss the realities of dying at home. Even as a physician assistant, I did not appreciate the challenges — or the immense rewards — of caring for my husband at home until his death.

According to a 2014 Harris/Decima survey, of those Canadians who express a preference for where they want to die, 75 per cent say they want to die at home, surrounded by loved ones. Interestingly, another Canadian study found that those loved ones aren’t quite as keen on the experience: half of the patients who said they wanted to die at home had family members who hoped the death would take place in an institution, like a palliative care unit. No matter: The majority (about 65 per cent) die in a hospital, which isn’t anybody’s first choice.

The palliative care and hospice community often use this data to advocate for more government funding of community supports, such as personal support workers, to help people die at home. And they’re right that home care and palliative care access is too uneven across Canada and in urgent need of more funding.

But what we don’t understand is how many of these hospitalizations at the end of life could be diverted with more nursing, more personal support workers, more respite for family caregivers. I believe that without better education around what’s involved in dying at home, extra resources won’t be enough.

Dying is messy. It shouldn’t have to be painful anymore, though in some cases, only deep sedation can relieve the worst pain. But pain aside, there is no getting around the progressive weakness, the loss of appetite, the fluctuating level of consciousness, the need for diapers or a catheter, and eventually, the shallow, laboured breathing. None of this has to be distressing for the patient, who can, if needed, be heavily drugged or even sedated. But it can be extremely distressing for family members to witness, and it can go on for days and, in some cases, weeks.

When I worked as a physician assistant in the emergency department, I saw many patients brought in by ambulance in those last stages of their disease. When I spoke to the family members, it was often clear they were overwhelmed by very predictable symptoms. But no one had laid it all out for them before. They weren’t looking for miracles — they accepted that death was inevitable — but they felt unprepared and untrained for the burden of watching their loved one struggle to breathe, to communicate, to just let go. Sometimes a spouse confessed that as the husband or wife’s death neared, they worried they’d always associate the home with the death. And so, they dialed 911.

How can we better support those family caregivers so that they don’t end up in the emergency department? Prepare them. Acknowledge the messiness of death. And obviously, provide palliative care resources.

In our house, I had a frank discussion with all the kids and even our cleaning lady: no matter how bad Don looked, no one was ever to call 911. I knew that if he was taken to hospital, he’d never come home again, and he’d die there. Our palliative care team had a binder that stayed on the kitchen counter, with Don’s Do Not Resuscitate order at the front. We had a nurse we could call if his symptoms weren’t being managed well. Don had opted for terminal sedation at the end: an induced coma, without food or fluids. The palliative care physician visited every few days to make sure the drugs were working, and to give us his best guess as to how much longer Don could go on like that.

I often see frail, elderly spouses who try to provide this care for their dying loved ones at home, and it wasn’t difficult to understand why they struggled. There’s no question that we were luckier than most families: I was relatively young, and we had the resources for me to stay at home and care for Don from the night they diagnosed his brain tumour until his death seven months later. Our children were incredibly strong and present, and we took turns doing even the most personal and intimate tasks for him.

Don had desperately wanted an assisted death, an option unavailable to him at the time. But if he had to die “naturally,” he told us, he’d prefer not to have strangers assisting him. In the end — only after Don was sedated, and with no small amount of guilt, we accepted help from those “strangers” to bathe him and turn him so he wouldn’t get bed sores.

There was so little comfort we could take in the fact of Don’s too-early terminal illness. But knowing that we helped him fulfil at least one of his wishes for his death — that he die at home — was comforting to us. And I thoroughly recommend it to other families if they can manage.

After Don died in my arms, all the kids came up to our bedroom and we surrounded him, breaking out his favourite scotch and sharing stories and memories. The palliative care doctor on call came to pronounce him dead and then I called the funeral home. And learned he’d be spending one more night beside me.

I’ll admit, it was weird. But as I pulled up the covers, I found they were mostly over on his side of the bed, and I smiled and looked over at his sweet face one last time. “Really Don? Hogging the covers, even in death?” And I slept soundly all night.

Complete Article HERE!

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