Tag: Death And Dying

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How dying offers us a chance to live the fullest life

The price of a humanity that actually grows and changes is death.

By Rowan Williams

[P]eople still sometimes discuss the question of how you could tell that you were talking to some form of artificial intelligence rather than an actual human being. One of the more persuasive suggested answers is: “Ask them how they feel about dying.” Acknowledging that our lifespan is limited and coming to terms with this are near the heart of anything we could recognise as what it means to be human.

Once we discovered that Neanderthals buried their dead with some ritual formality, we began to rethink our traditional species snobbery about them and to wonder whether the self-evident superiority of homo sapiens was as self-evident as all that. Thinking about dying, imagining dying and reimagining living in the light of it, this is – just as much as thinking about eating, sex or parenting – inseparable from thinking about our material nature – that to have a point of view at all we have to have a physical point of view, formed by physical history. Even religious systems for which there is a transition after death to another kind of life will take for granted that whatever lies ahead is in some way conditioned by this particular lifespan.

Conversely, what the great psychoanalytic thinker Ernest Becker called “the denial of death” is near the heart of both individual and collective disorders: the fantasy that we can as individuals halt the passage of time and change, and the illusions we cherish that the human race can somehow behave as though it were not in fact embedded in the material world and could secure a place beyond its constraints. Personal neurosis and collective ecological disaster are the manifest effects of this sort of denial. And the more sophisticated we become in handling our environment and creating virtual worlds to inhabit and control, the looser our grip becomes on the inexorable continuity between our own organic existence and the rest of the world we live in.

It’s a slightly tired commonplace that we moderns are as prudish in speaking about death as our ancestors were in speaking about sex. But the analogy is a bit faulty: it’s not simply that we are embarrassed to talk about dying (although we usually are), more that we are increasingly lured away from recognising what it is to live as physical beings. As Kathryn Mannix bluntly declares at the beginning of her book about pallia-tive care, “It’s time to talk about dying”. That is if we’re not to be trapped by a new set of superstitions and mythologies a good deal more destructive than some of the older ones.

Each of these books in its way rubs our noses in physicality. Caitlin Doughty’s lively (and charmingly illustrated) cascade of anecdotes about how various cultures handle death spells out how contemporary Western fastidiousness about dead bodies is by no means universally shared. We are introduced to a variety of startling practices – living with a dead body in the house, stripping flesh from a relative’s corpse, exhuming a body to be photographed arm in arm with it… all these and more are routine in parts of the world. And pervading the book is Doughty’s ferocious critique of the industrialisation of death and burial that is standard in the United States and spreading rapidly elsewhere.

Doughty invites us to look at and contemplate alternatives, including the (very fully described) composting of dead bodies, or open-air cremations. A panicky urge to get bodies out of the way as dirty, contaminated and contaminating things has licensed the development of a system that insists on handing over the entire business of post-mortem ritual to costly and depersonalising processes that are both psychologically and environmentally damaging (cremation requires high levels of energy resource, and releases alarming quantities of greenhouse gases; embalming fluid in buried bodies is toxic to soil). Doughty has pioneered alternatives in the US, and her book should give some impetus to the growing movement for “woodland burial” in the UK and elsewhere. At the very least, it insists that we have choices beyond the conventional; we can think about how we want our dead bodies to be treated as part of a natural physical cycle rather than being transformed into long-term pollutants, as lethal as plastic bags.

Talking about choices and the reclaiming of death from anxious professionals takes us to Kathryn Mannix’s extraordinary and profoundly moving book. Mannix writes out of many years’ experience of end-of-life care and presents a series of simply-told stories of how good palliative medicine offers terminally ill patients the chance of recovering some agency in their dying. Those who are approaching death need to know what is likely to happen, how their pain can be controlled, what they might need to do to mend their relationships and shape their legacy. And, not least, they need to know that they can trust the medical professionals around to treat them with dignity and patience.

Mannix’s stories are told with piercing simplicity: and there is no attempt to homogenise, to iron out difficulties or even failures. A recurrent theme is the sheer lack of knowledge about dying that is common to most of us – especially that majority of us who have not been present at a death. Mannix repeatedly reminds us of what death generally looks like at the end of a degenerative disease, carefully underlining that we should not assume it will be agonising or humiliating: again and again, we see her explaining to patients that they can learn to cope with their fear (she is a qualified cognitive behavioural therapist as well as a medical professional). It is not often that a book commends itself because you sense quite simply that the writer is a good person; this is one such. Any reader will come away, I believe, with the wish that they will be cared for at the end by someone with Mannix’s imaginative sympathy and matter-of-fact generosity of perception.

Sue Black’s memoir is almost as moving, and has something of the same quality of introducing us to a few plain facts about organic life and its limits. She moves skilfully from a crisp discussion of what makes us biologically recognisable as individuals and how the processes of physical growth and decay work to an account of her experience as a forensic anthropologist, dedicated to restoring and making sense of bodies whose lives have ended in trauma or atrocity. The most harrowing chapter (and a lot of the book is not for those with weak stomachs) describes her investigations at the scene of a massacre in Kosovo: it is a model of how to write about the effect of human evil without losing either objectivity or sensitivity.

Perhaps what many readers will remember most vividly is her account of her first experience of working as a student with a cadaver. For all the stereotypes of the pitch-dark and tasteless humour of medical students in this situation, the truth seems to be that a great number of them actually develop a sense of relatedness and indebtedness to the cadavers they learn on and from. Black writes powerfully about the sense of absorbing wonder, as the study of anatomy unfolds, of the way in which it reinforces an awareness of human dignity and solidarity – and of feeling “proud” of her cadaver and of her relation with it.

For what it’s worth, having taken part in several services for relatives of those who have donated their bodies to teaching and research, I can say that the overwhelming feeling on these occasions has been what Black articulates: a moving mutual gratitude and respect. And the book is pervaded by the sense of fascinated awe at both the human organism and the human self that comes to birth for her in the dissecting room.

Richard Holloway writes not as a medical professional but as a former bishop, now standing – not too uneasily – half in and half out of traditional Christian belief, reflecting on his own mortality and the meaning of a life lived within non-negotiable limits. His leisurely but shrewd prose – with an assortment of poetic quotation thrown in – is a good pendant to the closer focus of the other books, and he echoes some of their insights from a very different perspective. Medicine needs to be very wary indeed of obsessive triumphalism (the not uncommon attitude of seeing a patient’s death as a humiliation for the medical professional); the imminence of death should make us think harder about the possibility and priority of mending relations; the fantasy of everlasting physical life is just that – not a hopeful prospect, but the very opposite.

He has some crucial things to say about the politics of the drive towards cryogenic preservation. Even if it were possible (unlikely but at best an open question) it is something that will never be available to any beyond an elite; any recovered or reanimated life would be divorced from the actual conditions that once made this life, my life, worth living; how would a limited physical environment cope with significant numbers of resuscitated dead? The book deserves reading for these thoughts alone, a tough-minded analysis of yet another characteristic dream of the feverish late-capitalist individual, trapped in a self-referential account of what selfhood actually is.

****

Odd as it may sound, these books are heartening and anything but morbid. Mannix’s narratives above all show what remarkable qualities can be kindled in human interaction in the face of death; and they leave you thinking about what kind of human qualities you value, what kinds of people you actually want to be with. The answer these writers encourage is “mortal people”, people who are not afraid or ashamed of their bodies, those bundles of rather unlikely material somehow galvanised into action for a fixed period, and wearing out under the stress of such a rich variety of encounter and exchange with
the environment.

None of these books addresses at any great length the issues of euthanasia and assisted dying, but the problem is flagged: Black says briskly that she hopes for a change in the law (but is disarmingly hesitant when it comes to particular cases), while Mannix, like a large number of palliative care professionals, strikes a cautionary note. She tells the story of a patient who left the Netherlands for the UK because he had become afraid of revealing his symptoms fully after being (with great pastoral sensitivity and kindness) encouraged by a succession of doctors to consider ending his life. “Be careful what you wish for,” is Mannix’s advice; and she is helpfully clear that there are real options about the ending of life that fall well short of physician-assisted suicide.

Like all these authors, she warns against both the alarmist assumption that most of us will die in unmanageable pain and powerlessness and the medical amour propre that cannot discern when what is technically possible becomes morally and personally futile – when, that is, to allow patients to let go. The debate on assisted dying looks set to continue for a while yet; at least what we have here goes well beyond the crude slogans that have shadowed it, and Mannix’s book should lay to rest once and for all the silly notion occasionally heard that palliative care is a way of prolonging lives that should be economically or “mercifully” ended.

The most important contribution these books make is to keep us thinking about what exactly we believe to be central to our human condition. It is not a question to answer in terms simply of biological or neurological facts but one that should nag away at our imagination. How do we want to be? And if these writers are to be trusted, deciding that we want to be mortal is a way of deciding that we want to be in solidarity with one another and with our material world, rather than struggling for some sort of illusory release.

Richard Holloway doesn’t quite say it in these terms, but the problem of a humanity that doesn’t need to die is that it will be a humanity that needs no more births. The price of a humanity that actually grows and changes is death. The price of eternal life on earth is an eternal echo chamber. As someone once said around this time of year: “Unless a grain of wheat falls to the ground and dies, it remains only a single seed.” 

Waiting for the Last Bus: Reflections on Life and Death
Richard Holloway
Canongate, 176pp

All that Remains: a Life in Death
Sue Black
Doubleday, 368pp

From Here to Eternity: Travelling the World to Find the Good Death
Caitlin Doughty
Weidenfeld & Nicolson, 272pp

With the End in Mind: Dying, Death and Wisdom in an Age of Denial
Kathryn Mannix
William Collins, 352pp

Complete Article ↪HERE↩!

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Head for the right exit

Many writers have tried to encourage conversations about dying, often with the aim of helping us achieve a ‘good death’.

Intensive care specialist Charlie Corke.

By Jane Mccredie

[A]t dusk some years ago, I walked past an open doorway in the southern Italian village of Paestum. Just inside, a body lay on a table, candles surrounding it, as locals filed in and out, paying their respects.

It struck me at the time how different this was from the general Australian experience, where the end of life is sanitised, hidden and often medicalised to the point of cruelty.

For centuries, our ancestors would have tended their dying relatives, washed their bodies, stood vigil over them in the homes where they lived and died. Many people around the world still do this, of course, but we in the West are more likely to end our days in aged care or, worse, a hospital intensive care unit. We may be subjected to futile, traumatic interventions right up to the moment we take our last breath.

In recent years a number of writers have sought to encourage franker conversations about dying, often with the stated aim of helping us to achieve a “good death”. Notable local books have come from intensive care physician Ken Hillman, general practitioner Leah Kaminsky and science writer Bianca Nogrady. But the reluctance to talk about death remains.

“It has become taboo to mention dying,” writes British palliative care physician Kathryn Mannix in With the End in Mind:

This has been a gradual transition, and since we have lost familiarity with the process, we are now also losing the vocabulary that describes it. Euphemisms like “passed” or “lost’’ have replaced “died” and “dead”. Illness has become a “battle”, and sick people, treatments and outcomes are described in metaphors of warfare. No matter that a life was well-lived, that an individual was contented with their achievements and satisfied by their lifetime’s tally of rich experiences: at the end of their life they will be described as having “lost their battle”, rather than simply having died.

We must reclaim the language of dying, Mannix argues. Clear, unambiguous conversations about what is ahead offer support to the dying person as well as those who will mourn their death. “Pretence and well-intentioned lies” separate the dying from those they love, wasting the ­limited time they have left. Mannix first discovered the power of straightforward lang­uage as a junior doctor when a superior offered to describe to an anxious patient “what dying will be like”. “If he describes what? I heard myself shriek in my head.”

The senior doctor went on to describe in detail the pattern of dying he had observed over years of practice: increasing tiredness, more time spent sleeping, a gradual drift into unconsciousness, followed by changed respiratory rhythms until the breath finally stopped. “No sudden rush of pain at the end. No feeling of fading away. No panic. Just very peaceful … ” he told the patient.

Back in the tearoom, he told the young Dr Mannix this was probably the most helpful gift they could give their patients. “Few have seen a death,” he explained. “Most imagine dying to be agonised and undignified. We can help them to know that we do not see that, and that they need not fear that their families will see ­something terrible.” Mannix was left amazed that it was possible to be this honest with patients­, revising her “ill-conceived beliefs about what people can bear”, beliefs that could have prevented her from having the courage to tell the truth.

Over the decades since that paradigm-­shifting experience, she helped countless people of all ages and backgrounds through the final stages of their lives. Their stories are threaded through this moving and informative book. “The process of dying is recognisable,” Mannix writes:

There are clear stages, a predictable sequence of events. In the generations of humanity before dying was hijacked into hospitals, the process was common knowledge and had been seen many times by anyone who lived into their thirties or forties. Most communities relied on local wise women to support patient and family during and after a death, much as they did (and still do) during and after a birth. The art of dying has become a forgotten wisdom, but every deathbed is an opportunity to restore that wisdom to those who will live, to benefit from it as they face other deaths in the future, including their own.

In Letting Go: How to Plan for a Good Death, Australian intensive care specialist Charlie Corke offers­ practical tools to help people make and communicate decisions about how they would want to be treated at the end of life.

Corke’s professional experience leads him to paint a very ­different picture of dying from that offered by Mannix. The ­specialties of intensive and palliative care are in some ways polar opposites: intensive care does everything possible to ward off the inevitable, while palliative care accepts death, seeking to ease the patient’s approach to it.

Corke admires the triumphs of modern medicine and the many achievements of his specialty, but he has also seen how easy it is for medical treatment to go too far. Most of us will die in old age, after a long period of declining health, he writes. One crisis or another will lead to us being taken to hospital by ambulance where, in the absence of clear ­instructions from us, medical intervention will escalate:

We will spend our last days connected to machines, cared for by strangers, and separated from our family. We will experience significant suffering, discomfort and indignity, receiving increasingly intense treatment that has a diminishing chance of success. Medical technology will dominate our last days and weeks. Our family will be excluded from the bedside, huddled in the waiting room, while “important” things are done to us. Time for connection and comforting, for any sort of intimacy or the opportunity to say goodbyes, will be missed …

Books on dying: With the End in Mind; Letting Go; Every Note Played

The purpose of this book is to help people avoid that outcome. Corke offers clear advice on questions to ask doctors, on writing and sharing a plan, and on appointing a substitute decision-maker to step in if we are unable to express our own views.

Above all, he stresses the importance of clear, unambiguous communication about what we want to happen at the end of life. If there is any doubt about our wishes, maximum intervention will be the result:

Wishes matter, but it can be difficult to get them heard. Wanting to be saved is easy. “To do whatever is required to save” is what everyone wants to do for you, needs to do, and is expected to do. It’s what our medical system is designed to do. It’s the default; it’s what you get. When we want to set limits, it’s more difficult …

All in all, this is a useful how-to manual for everybody who will at some point face death (which is of course all of us).

In Every Note Played, Lisa Genova chooses a different form to explore the end of life.

Over the decade since publication of her first novel, Still Alice, which was filmed with Julianne Moore in the lead role, Genova has mined her background as a neuroscientist for fictional ­material, producing novels about ­dementia, autism, traumatic brain injury and Huntington’s disease. In her fifth novel, she turns her attention to amyotrophic lateral sclerosis, telling the story of Richard, an acclaimed concert pianist diagnosed with the disease at the height of his career.

ALS is the central, and strongest, character in this book, dwarfing the somewhat one-­dimensional human actors and the overneat redemptions they achieve. The merciless progression of the neuro­degenerative condition is described with elegant, sometimes gruesome, precision as Richard loses the ability to control first his arms, then legs and, ultimately, everything but his eyes

As in the real-life case studies presented by Corke and Mannix, the approach of death pre­sents Richard and those close to him with appalling dilemmas: How much can we ask of others? How far should we go to preserve life? What does quality of life mean?

Richard’s state of mind as his disease progresses is not helped by the hearty refusal of his brothers to accept the inevitability of his fate. “What are you doing to fight it?” one asks when he sees Richard in a wheelchair. “You gotta stay positive. You should go to the gym, lift some weights and strengthen your leg muscles. If this disease starts stealing your muscle mass, you get ahead of it and build more. You beat it.”

Richard manages a slurred response — “Goo-i-de-a” — while privately wondering at his footballer brother’s incomprehension of his condition:

Is living at any cost winning? ALS isn’t a game of football. This disease doesn’t wear a numbered jersey, lose a star player to injury, or suffer a bad season. It is a faceless enemy, an opponent with no Achilles’ heel and an undefeated record … High tide is coming. The height and grandeur of the sand castle doesn’t matter. The sea is eventually going to rush in, sweeping every single grain of sand away.

Richard’s brothers, like all of us, might have benefited from a share in what Mannix refers to as her “peculiar familiarity with death”:

Strangely, this is not a burden or a sadness, but a lightning of perspective and a joyful spark of hope, a consciousness that everything passes, whether good or bad, and the only time we can really experience is this present, evanescent moment.

Complete Article ↪HERE↩!

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‘Death is not a failure’: Medical schools adapt end-of-life lessons

By Lindsay Kalter

[L]ocal medical schools are in the process of a curricula revamp that will train students to focus more on end-of-life care, making Massachusetts the first in the nation to reach a statewide commitment to quality of life.

“Massachusetts is really leading the way on this. It led the way on universal health care, on gay marriage, and it’s leading the way on this, too,” said Dr. Atul Gawande, a surgeon at Brigham and Women’s Hospital and author of the book “Being Mortal.” “I’ve learned the question is not do you fight or do you give up. The question really is, what are we fighting for? What’s the quality of life we can fight for?”

The Massachusetts Coalition for Serious Illness Care has orchestrated the effort among four local institutions: Harvard Medical School, Boston University School of Medicine, Tufts University School of Medicine and University of Massachusetts Medical School.

Gawande, co-founder of the coalition, said Massachusetts has the opportunity to create a national model for medical schools across the country.

It’s an important shift, he said, from the fix-it mentality that many doctors are taught to possess. He said the extent of his end-of-life training amounted to an hour of discussion in the first two years of medical school.

“You go in focusing on wanting to be a hero and fix things,” Gawande said. “Teaching people in med school what it means to be an effective clinician for giving people cutting-edge care for quality of life — as opposed to quantity of life — is a neglected skill.”

The medical schools are taking inventory of what skills they’re already teaching and will add various training methods including role play patient actors. UMass Medical School’s simulation lab is already starting to be used for skills that extend beyond sewing and suturing, said Dr. Jennifer Reidy, the school’s chief of palliative care.

Medical students will be required to have conversations with people about breaking difficult news, prognosis and end-of-life planning.

“We’re using it to teach complex communication procedures,” Reidy said. “We want to ensure our newest clinicians are well-situated to practice these skills.”

The changes will be implemented in full by the beginning of next academic year, Reidy said.

Tiffany Chen, a third-year medical student at UMass, said the topic of death is still taboo even in the medical field.

“It’s really hard to talk about death, and it’s hard to conceptualize,” Chen said. “But death is not a failure and there’s always something you can do for a patient. If we can infiltrate the medical field with that mindset, we could do a lot of good.”

Complete Article ↪HERE↩!

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Dying with Dignity: A look at the life of a hospice nurse

BY ZACK WAJSGRAS

The final months of a person’s life are a confusing time for both the person and his or her family. Not only do final preparations have to be made, but the emotional stress of impending loss leaves many overwhelmed as grief makes tough decisions increasingly onerous.

Often, families seek professional help in the form of assisted living centers to alleviate the burden as their loved ones age. But once a patient receives a diagnosis that he most likely has less than six months to live, a new option becomes available: Hospice care.

Lee Read, a case manager with Hospice of the Piedmont, manages more than two dozen hospice patients at the Greenbrier and Hollymead locations of RoseWood Village Assisted Living centers, most of whom have dementia. Her organization, a community-based non-profit headquartered next to Sentara Martha Jefferson Hospital, focuses on end-of-life care for patients living all across Central Virginia. Read’s ultimate responsibility, and the company’s vision statement, is to make sure “nobody dies alone or in pain.”

Lee Read speaks on the phone at the RoseWood Village assisted living home on Greenbrier Drive near the nurses work station. Read’s job involves constant calls with doctors, family members of patients, insurers and other Hospice of the Piedmont staff.

In doing that, she manages the medications, equipment orders, triage care, dietary requirements and everything else her patients need to remain comfortable. She also serves as a liaison for the insurance companies, doctors and family members involved with her ever-changing caseload. While most healthcare professionals develop relationships with their clientele, hospice workers watch almost all of their patients die, making the emotional impact an additional challenge.

“I think over time you develop a thick skin,” Read said. “Otherwise, you could take on so much [emotion] that you become almost debilitated or think that you really can solve all those [health] problems, and [you] can’t.”

Dora Goldberg, 90, poses for a portrait at the RoseWood Village assisted living home on Greenbrier Drive after a game of bingo. Goldberg is one of Lee Read’s patients and suffers from dementia, like many of Read’s patients.

Read has a minimum number of required visits for each patient that is based on Medicare requirements, usually ranging from two to four times a week, during which she tracks each patient’s condition and determines what he or she needs. After six months, a patient can recertify if her condition is still declining and their diagnosis is the same, or she can “graduate” if her condition improves. She also works with a team that includes a social worker, a chaplain, certified nursing assistants and supervisors who specialize in different parts of the care process.Once a week, the team meets at the company headquarters to discuss the status of each patient and figure out what needs to be accomplished in the week ahead. Each meeting also includes a moment of silence, after which a ceremonial marble is dropped in a vase for each patient who has died since the last meeting. While it is marbles this time, each year a new symbolic object is chosen.

For Read, hospice was not her first career path. After graduating from William and Mary with a pre-med degree, she pursued a master’s in divinity from Columbia Theological Seminary in Georgia. She then went on to become a chaplain at the University of Virginia and Westminster-Canterbury of the Blue Ridge retirement home in Charlottesville.

But two events changed her perspective and led her back to health care. Her father received hospice care at the end of his life, and her 4-year-old son was diagnosed with cancer within a short span of time. Her son survived the disease, but the experience inspired her to go to nursing school. She also completed the majority of the requirements for a degree in social work, giving her formal education in nearly every function her team at Hospice of the Piedmont performs.

Lee Read holds a patients arm in the common room of the RoseWood Village assisted living home at Hollymead Town Center.

Her interest in helping people resulted in a career defined by “moving to different spots around the bed” of her patients, training her to fulfill both their spiritual and healthcare needs.

For Jeannie Holden, whose mother, Dora, is one of Read’s patients, hospice care came in a time of need.

“I can look back at the emotional part of that [decision] and how difficult it was. My mother was in the hospital, and she had sepsis, and we really didn’t think she was going to pull through,” Holden said. “Up until that point, I didn’t know that I really had any options.”

But after discovering Hospice of the Piedmont, that process became much easier.

“From the get-go, the care, the resources, the on call, the always being there from the social worker to their chaplain, [they] let me know they were there for me as well as my mother,” Holden said. “I always think that there’s more that I can do and I always have to be available, and they’ve helped me to realize that I am doing enough.”

For those who might be in a similar position, Holden said, it’s important to know the reality of hospice.

Lee Read (right) speaks on the phone at the foot of Juanita Burke’s, 97, bed at the RoseWood Village assisted living home at Hollymead Town Center. Burke, who had little strength left, died several days later.

“It’s not synonymous with death being imminent, [but] that it is certainly an end-of-life process,” Holden said. “Hospice can help you maneuver through and help you on the path to accepting that a loved one is at their end of life, [and] they help to make that quality of end of life good, to the best that they can.”

Even after dealing with death personally, professionally, theologically and medically, though, Read is still puzzled by life’s biggest questions.

“I certainly don’t have all the answers, and I’m not even that comfortable when I’m around people that have all the answers, whether it’s a religion or even a company. I like the questions and I like looking for the answers together,” she said. “It’s not my death; it’s not my journey. I am privileged to walk on the ground of the sacred journey of whoever is dying, but it’s their death.”

The families she works with often ask many of those same questions, to which she usually says, “I don’t know, but we’ll be here.”

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Hospice is different from palliative care but both are considered ‘comfort care’

Comfort care at the end of life means managing symptoms, such as pain, anxiety and shortness of breath, says Janet Burda, advance practice nurse at Palos Community Hospital.

By Donna Vickroy

[D]espite confusion over what exactly constitutes “comfort care,” former first lady Barbara Bush’s decision to opt for it is opening doors onto some very important conversations, according to local end-of-life care experts.

Before she died Tuesday, the 92-year-old Bush had been struggling with congestive heart failure and chronic obstructive pulmonary disease, reports said.

When news broke last Sunday that she was opting for “comfort care” during her final hours, a flurry of questions followed.

Is comfort care not medical care? Is it a form of hospice? A form of palliative care?

Janet Burda, advanced practice nurse with Palos Community Hospital’s Home Health program in Palos Heights, said comfort care is a general term for keeping a patient comfortable at the end of life.

“Doing that means providing medical care to help with symptom management,” said Burda, who works with both hospice and palliative care.

Relieving anxiety, pain and shortness of breath are examples of comfort care, she said.

The other part of comfort care, she said, “is helping relieve anxiety for the caregiver.”

Often caregivers don’t know what to expect at the end of a loved one’s life, Burda said, and they often don’t know how to recognize symptoms of discomfort in a patient who is not able to talk or otherwise communicate. “We can help them with that.”

Palliative or hospice?

Palliative and hospice care both address the physical, emotional, medical, spiritual and psychosocial needs at a vulnerable time in a patient’s life, she said. They differ, Burda said, in terms of when and where they are applied.

Palliative care can begin at diagnosis, while hospice care is relegated to the last six months of life, Burda said.

Rachael Telleen, director of community outreach programs for JourneyCare, a hospice and palliative care organization that hosts presentations across the region including the south suburbs, said, “Palliative and hospice are both considered comfort care.”

Comfort care, she said, “is a term people are using now because it’s easier for doctors to initiate it.”

The word hospice can really scare people, she said. “So, instead, if we can approach the situation using the word ‘comfort,’ people are more accepting and more open to it.”

Telleen said while both palliative and hospice aim to manage pain and symptoms, palliative care is a support that may be provided while a person is still receiving aggressive treatments.

Hospice, on the other hand, is for patients who are no longer receiving aggressive treatments, she said.

“A patient in hospice receives a lot more services,” Telleen said.

Burda said palliative care allows the patient the option of going back and forth to the hospital. It consists of a team in the inpatient world and a team in the community setting, she said. They work alongside an attending physician.

“A person who has cancer and is receiving chemo or radiation can be under palliative care for symptoms such as pain, anxiety, shortness of breath, nausea, vomiting or diarrhea,” she said.

“A palliative care team can help manage those symptoms but the patient wouldn’t qualify for hospice because they are not necessarily terminal,” she said. “We’re kind of that stepping stone before hospice.”

While palliative care can go on for an extended period of time, hospice is for patients who are expected to live six months or less, Burda said.

To qualify for hospice, a patient must have a qualifying terminal illness and meet certain criteria, Burda said.

“Old age is not a qualification necessarily,” she said.

All of these options are typically covered by insurance and Medicare, Burda said. Hospice is a Medicare benefit and the components — medications, equipment, physician fees — are typically lumped together.

To some people, Burda said, palliative care sounds better, even if it would be more beneficial for them to be in hospice because of its around-the-clock access to a nurse and symptom care.

“But sometimes that scares people. They don’t want to lose that option to go back to the hospital,” she said. “They are not ready to accept that it is the end.”

Sometimes, she said, she walks people through different scenarios to help them picture what the journey will look like.

“At the beginning the patient could be doing fine. That’s the best time to get hospice involved because they get to know the patient and the caregiver and help them on this journey,” she said.

All end-of-life care should begin with conversation, Burda said.

People should take steps to educate themselves and family members about preferences and options, she said. More information on the Palos program can be found here.

“Talk to your family. Have that critical conversation about what you want the end of your life to look like. That affords you the control,” she said.

“There are people who say they don’t know and don’t care. That’s fine too but then designate someone to make those decisions for you when the time comes that choices need to be made,” she said.

Advanced directives

Telleen said Bush’s death came on the heels of National Healthcare Decisions Day, which was April 16.

She said the former First Lady’s passing has sparked conversation about end-of-life planning.

“We want people to know what they want before they’re in a crisis,” she said. “Making decisions in a crisis is the most challenging time for people to think clearly.”

Telleen said she encourages everyone older than age 18 to think about advanced care planning and to develop an advanced directive.

“That is being prepared in case something happens and you can’t speak for yourself. And that can happen when you’re 20 or 30. It doesn’t just happen to people who have an illness that is progressing. It could happen because of a car accident. It could happen at any point in an unexpected manner,” she said.

“Ask yourself, ‘If I couldn’t speak for myself who do I identify to speak on my behalf and does that person understand what your wishes would be?’” Telleen said.

Telleen said JourneyCare (https://journeycare.org/) provides a free document called Five Wishes available to residents in 10 counties in northeast Illinois to help them make advanced care decisions. For more information, go to journeycare.org/advance-care-planning.

Complete Article ↪HERE↩!

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Death doula turns grief into guidance

Last fall Catherine Hayes’ sister died in a helicopter accident; on April 26 she launches The Departure Lounge

After her sister’s untimely death, Lynn Valley resident Catherine Hayes has started a grief group called The Departure Lounge, set inside a large lodge cabin along the side of Hunter Creek.

By Maria Spitale-Leisk

[T]hese facts Catherine Hayes will always remember. It was the day her sister, her rock, was gone.

“She could always rally me in ways that nobody else understood,” says Hayes. “I had her for 43 years, you know, protecting me. Forty-three years – some people never have that, right?”

On Oct. 1 the early fall sun was warming Hayes’ face while she was singing her sister Karen Coulter’s praises to a mutual friend.

Coulter had already earned her engineering ticket to fix helicopters, but she wanted to go further.

“She had always wanted to fly,” says Hayes.

Coulter found her wings and got on with the air ambulance service in Alberta.

She soon found her way back to B.C. and took a job in Campbell River last summer. Coulter was in her element and loving life, according to her sister.

Nothing could prepare Hayes for the call that evening.

Friends were over for dinner and an unfamiliar number was illuminating her phone. Coulter’s helicopter had crashed in a remote forested area on the island, Hayes heard.

She tried to remain calm under the shocking circumstances, while hurrying to catch the next ferry to the island to be by her sister’s side.

In her mind Hayes thought: “I’m just going to go there and clean her up a bit and she’d be OK.”

On the ferry ride over Hayes had her life turned upside down.

“It is like being completely sucker punched just for no reason,” describes Hayes.

Her partner, Shawn, had only left her side momentarily to grab a coffee. Hayes’ cousin delivered the news over the phone while she was alone surrounded by strangers.

“He just said: ‘She died.’”

Her phone dropped and Hayes started screaming. The worst was yet to come.

When she got to Victoria, her sister wasn’t there, which sent Hayes on a wild goose chase.

“We couldn’t find her for a long time,” she recalls.

At first Hayes was told Coulter would be in Victoria. She wasn’t there. Maybe Comox?

Eventually, Hayes learned her sister’s body was still in the helicopter amongst the dense bush in pitch-black darkness.

The coroner wouldn’t arrive until daylight. It’s a scene that hauntingly plays over again in Hayes’ head.

Those first few days were the hardest. Hayes was presented with impossible questions that she couldn’t possibly prepare for.

Did she want the clothes her sister was wearing when she died?

“How do you respond to that?” says Hayes.

She would have recurring flashbacks of trying to reach her sister, but just going around in circles.

There was no beginning and end to her days – time blurred together into one vivid nightmare.

Hayes tried a host of remedies to turn her brain off at night – prescription and non-prescription – to no avail.

In the long days and months after the accident, along with overwhelming grief, Hayes had this nagging fear.

“Who’s going to go next? Is it going to be me? Is it going to be my son?”

The pain and anxiety became unbearable. Hayes compares it to being caught in an avalanche – you don’t know which way is up.

“And every time you do get a breath – you’re slammed again,” she says.

There is no textbook answer for how to handle grief. Hayes had someone say to her, you can’t be sad forever. But Hayes couldn’t see it any other way.

A framed collage of Coulter’s life leans up against a wall in Hayes’ kitchen. She curated the collage with some pictures discovered while cleaning out Coulter’s purse.

There’s a faded photo booth strip of the sisters goofing around in their teenage years.

“She probably even permed my hair and made me do it,” says Hayes, summoning a smile.

Hayes had no idea her sister had held on to the memento all these years in her wallet.

It’s these precious gifts from beyond the grave that buckle Hayes’ knees, often in the most unlikely places and without warning.

With the facts around her sister’s death seared into her brain, Hayes forgot how to take care of herself.

She says she felt like she was walking on her hands and eating with her feet. Nothing felt normal.

It was while hiking in Lynn Headwaters with a good friend that Hayes saw a faint light at the end of the tunnel.

The friend dropped the term “death doula” and Hayes was intrigued. She went home and immediately googled it.

“It was so clear to me that this is what I’m supposed to be doing,” says Hayes.

Except the timing for Hayes becoming a certified death doula was a little off, she admits.

You’re not supposed to take the program when you’re in the throes of grief, but Hayes pushed through to the other side.

She was a student learning about grief when she had already aced the painful exam.

Hayes took a three-month, end-of-life doula program overseen by the Conscious Dying Institute out of Colorado.

The serene setting for the course was an old brick building on the west side of Vancouver, with floor-to-ceiling windows and plenty of natural light.

Just like a birth doula, a death doula maps out the journey according to a personalized plan.

The doula helps a person with anything that might “flare up” during those last months, from tying up loose ends, to mending fences with a loved one, to pain management, to after-death arrangements.

Hayes said some people will take two weeks to answer the questions “because it really causes you to dig deep.”

This end-of-life direction goes deeper than a will or a medical representation agreement.

Families often hire a death doula a few months out from the main event.

A plan is made, called Your Best Three Months.

The doula helps their client check off items on their death wish list, covering off five elements of life from the spiritual to the physical.

Hayes took the test herself, as part of her training. One of the questions she faced was: While you’re still physically able, what do you want to do?

Hayes learned she wants to climb the Eiffel Tower. Step 1 – how is she getting there? She would have to budget her finances, take time off work, book a flight and find a place to stay.

Hayes took her travel planning one step at a time – just like her grief journey.

Half a year after her sister’s sudden death, Hayes is starting to put one foot in front of the other again.

She’s now a certified end-of-life doula and has started a grief group, called The Departure Lounge. The first meeting is April 26, set in a large log cabin with a fireplace nestled alongside Hunter Creek in Lynn Valley.

The guest speaker that evening will be her stepsister, Rev. Colleen Tanaka, who helped pull Hayes out of the grief fog.

There will be guided meditation. For people who want to share, they can talk briefly about their experience with grief. Afterwards, attendees can mingle together over coffee and tea.

It’s almost like matchmaking for the bereaved. After being introduced, Hayes is hoping some people will group up in the community on their own.

Hayes said her unfortunate experience makes her relatable to others who are grieving.

She’s already had an overwhelming response – more than 100 emails from people wanting to share their personal story of grief, including a dad who lost both sons in drunk driving accident.

“It’s like all of sudden I got this street cred,” she says.

Now that she’s getting stronger, Hayes wants to help as many people as she can. “We learn all kinds of things in school but there is nothing that teaches us about death and grief,” she says.

Hayes cites a Gord Downie quote: “Let’s turn our faces toward the sun and get whatever warmth there is.”

This November for her 45th birthday, Hayes will board a plane to Paris and soar towards the sky.

Complete Article ↪HERE↩!