I wanted to help my dying friend. But that meant helping him die

When a friend asked me to accompany him to an organisation that provides assisted suicide, I trusted my feelings would catch up with my desire to help

By Steven Amsterdam

Steven Amsterdam
Steven Amsterdam, the author of The Easy Way Out and a palliative care nurse

I had nearly finished writing a novel about a dying assistant (not an assistant who is terminally ill; a person who hands over the necessary overdose of Nembutal) when I had a fateful conversation with an old friend.

Russ, who had long been sick, asked if I would go with him to Dignitas in Switzerland – a nonprofit organisation that provides assisted suicide – to help him die.

He said, “It’ll be good for your book.”

I’m a palliative care nurse, so I am all for a good, comfortable death. The nursing work is the reason I wrote the book – to imagine how such a character gets through their life and why. But Russ was not asking for creative writing. After three years of co

“Come on,” he said. “You should write about it. Plus, I’ll need a nurse for the endgame.”

I said “yes” because I trusted that my feelings would catch up with my desire to help my friend.

Almost 30 years ago Russ and I were briefly housemates in Brooklyn. He was a grad student in Icelandic mythology, stringing fellowships together and living mostly at the library, or in Reykjavik.

A few years later, when he was diagnosed with multiple sclerosis, he left the ancient world for better health insurance and became an academic editor. He battled on after that – with accessible keyboards, accommodating work hours and, finally, handrails and ramps – until he couldn’t manage anymore. “Retired” at age 40, his world scaled down to a few far-flung friendships and to his studio apartment in Queens.

Last year, a series of seizures – “wrecking balls”, Russ called them – abruptly took away function of just about everything but his left hand. Unable to transfer from bed to wheelchair, much less prepare food, he became reliant on public benefits and a shrinking bank account. To get by, he needed an ever-changing array of aides. Underpaid and undertrained, they thoughtlessly bullied, yakked and dropped him. To preserve a semblance of solitude, he limited their assistance to a few hours a day.

I live in Melbourne, so I was useful for middle-of-the-night calls. “That’s not nothing,” he said. When he was both dreading and needing the next aide, when he couldn’t reach the water on his end table, or when his mind was not being kind to him, we talked. A closer circle of friends or family or a better healthcare system could have helped but they weren’t an option. He was trapped in his bed, alone and crying.

“We always knew I wouldn’t do well when it got like this. I never expected it would be so soon.”

He told me last August he wanted to be dead before Christmas and that I would be the ideal escort. My patients have taught me how to discuss death without the usual terror, which lent me cred. Writing the novel had given me more than a casual understanding of all that would be involved. And after watching Terry Pratchett’s documentary about accompanying someone to Dignitas, I even knew my way around the Ikea-plain apartment where it would happen.

For me, the experience would be nursing education. It would be research for the book. And, as Russ pointed out, the flight to Zurich would be tax-deductible.

The application to Dignitas was his last writing assignment. For weeks, Russ fine-tuned his one-page statement on why he wanted to die. Another friend helped locate and notarise all of the required documents – confirming identity, prognosis and state of mind. She and I would accompany him, so that neither of us would have to fly back alone.

While Russ waited, he revised his will, gave his belongings away and, with heartbreaking care, explained to his 10-year-old niece why he wanted to die.

The letter finally came in December, outlining the final bits of protocol. For me, the letter was a doorway: I knew I would be ready to help him die. For Russ, it was something else: the planning stopped. He seemed to relax into his situation at home. He didn’t embrace it but, when he described an aide’s latest screw-up, I heard less rage and more acceptance of what was happening to his body. He stopped talking about dying as often or as urgently. There were fewer late-night calls. And, when we talked, it was about my edits and not his panics.

Dignitas were asking for too many documents, he said. Or Zurich would be too cold this time of year. Or this: “It’s too big a trip to make if I’m going to chicken out.”

It seemed as if what he had wanted was acknowledgement that he had been dealt a crap hand. With the official affirmation from Dignitas, he could go on playing it.

Then, last June, nearly a year after he first voiced the wish, the plan was on again. He would go in July. “I’m not cheerful about it but I don’t see another way.” The friend who’d helped with so much of the paperwork and another friend – one he’d had little contact with but who lived nearby – would go.

Not me.

“You live too far away,” was all he said, though the distance hadn’t been an issue before.

I imagine there’s a long word in Icelandic to describe the unique whiplash that comes from psyching oneself up to emotionally support a suicide and then suddenly being excluded from the project. Was it really logistics? I checked back over our conversations for some offence. Did I show too much writerly curiosity? Too much nursey pressure? Was he simply protecting me from the moment in the Dignitas apartment that neither of us could picture?

Russ made the trip and died two months ago. When I heard that he was resolved and relaxed in his last hours, I stopped speculating why I wasn’t there. It wasn’t about me.

The grief I’m left with has mostly been the completely ordinary and uncanny kind – life goes on without him. We lived apart for so long that my daily routine is untouched. It’s when I think about the conversations we’ll never get to have that I feel the loss. At times though, it gets more complicated. The anger is not at his quick death but at the long disease that led him to a place where he couldn’t see another way. Suicide – for lack of a better word – serves as a reminder that life is not only finite, it’s optional. What do we do about that? I don’t pretend to know.

More recently, a different feeling has washed up, requiring another long word in a strange language to articulate. It would cover every part of this past year with Russ: the wrecking balls, the plan, the new plan, his death and its aftermath. The word would mean three things at once and it would apply to both of us: a door tightly closed, a mercy granted and a bullet dodged.

So here, Russ: I wrote about it.

Complete Article HERE!

Mission creep doesn’t benefit patients at the end of life

The author’s father, John T. Harrington, with one of his great-grandchildren, Libby M. Myers.
The author’s father, John T. Harrington, with one of his great-grandchildren, Libby M. Myers.

By Samuel Harrington

When my father was 88 and the picture of health for his age, he taught me, an experienced physician, an unexpected lesson.

We were discussing treatment options promoted by his primary-care physician and other doctors for an aortic aneurysm — a ballooned segment of blood vessel at risk for dangerous rupture in his abdomen. He turned to me and asked, “Why would I want to fix something that is going to carry me away the way I want to go?”

My father had the generally accurate impression that if his aneurysm ruptured, he could demand pain medicine, decline emergency surgery and be dead from internal bleeding within a few hours or, at most, a day or two.

With his unexpected question, he directly challenged the assumption that a doctor’s advice is always in a patient’s best interest, particularly regarding a medical problem late in life. This proposition had been my general belief, but after more than two decades as an internist and gastroenterologist, he had prompted me to reconsider it.

Furthermore, Dad was making an important distinction, between care at the end of life (in this case, palliative care for pain) and treatment (aneurysm repair). He was also suggesting a natural exit strategy. Not suicide, to which he had a moral objection, and not physician-assisted suicide, which was not a legal option in his home state of Wisconsin.

Despite his generally decent health, we both thought that he was too old for a major surgical repair, so I suggested he undergo an outpatient procedure to insert a stent to prevent the ballooning artery from worsening — that would at least postpone the threat of rupture. My reasoning was that with the stent, he was likely to enjoy the birth of his first great-grandchild and that without it, he would probably never know her.

My father lived five more years and met 12 great-grandchildren. Three of those years were good ones, but two of them were not.

I have asked myself, “Was it worth it?” I know that he asked himself that, too. His mantra for the last two years of his life was “I have lived too long.”

The 2003 book “Tyranny of Treatment” documented the terrible medical procedures used in 18th-century England: draining blood from swollen legs and testicles, radical mastectomy without anesthesia; bleeding arms to “cure” eye problems.

Painful, futile treatment continues to this day, particularly with elderly patients who often are not informed of the difference between palliative care, designed to minimize pain while trying to preserve quality of life at the end, and aggressive treatment more designed to prolong life at any cost, using such methods as surgery or chemotherapy. Often they are not informed about the benefits of letting some conditions run their course.

Here in America, there is a deeply held belief that advances in medicine will eventually conquer or cure the chronic scourges of cancer, dementia, heart disease, lung disease and diabetes. This notion leads many elderly patients to seek aggressive treatment not only to spare their loved ones grief but because they hope (and expect) to be cured, if only they hold on just a little longer.

This is one reason that every year more than 75,000 people older than 85 die in intensive care units seeking care that proves to be futile, according to a 2004 study, and why more than 65 percent of our senior citizens die in institutions when a significant majority say they would prefer to die at home, according to a 2014 report by the Institute of Medicine.

The impulse to treat often prompts us to forget that many elderly patients have multiple medical problems brought on by chronic organ system weaknesses. Focusing aggressive therapy on one serious diagnosis can complicate another to the point of death, disability or prolonged hospitalization. Beyond that, too many doctors succumb to research from drug and device makers that show incrementally positive results for therapies that mean little to someone at the end of a long life.

As an example, a friend recently told me about her 89-year-old mother’s consultation with an oncologist for a Stage 4 cancer of the pancreas. The doctor launched into a description of some new treatment options.

After listening carefully to what the doctor offered, the patient posed the question, “How long can I expect to live if I decline chemotherapy, and how much longer can I expect to live if I undertake therapy?” When the doctor responded that the answer to both questions was three to six months, she cut short the consultation.

According to the science behind the studies, three months of added life expectancy is considered a statistically significant improvement. But for many people at an advanced age, three months of added “life” in hospitals or nursing homes, possibly suffering side effects, may not be an appealing prospect. My friend’s mother looked at the statistics and saw no practical benefit.

Facing the tyranny of treatment is not usually so dramatic. Not every patient has the option to decline surgery for a threatening aneurysm or chemotherapy for late-stage cancer. Most patients have multiple smaller decisions to make in the mission creep of treatment vs. care. These patients and their families need help thinking about the natural progression of aging and visualizing what they want at the end. Then, if they decline treatment and choose palliative care, they can consider an exit strategy.

One patient I spoke with was living a bed-to-chair existence and suffering urinary incontinence from multiple mini-strokes. She resisted the initial insertion of a bladder catheter as one indignity too far. The thought of an invasion of body, followed by regular catheter exchanges, brought a ripple of sadness to her eyes.

She brightened, however, when I explained that refusing to exchange the catheter would ultimately create a painless urinary-tract infection. If she chose, she could then decline antibiotics, and with the help of palliative medications would be able to die comparatively comfortably of a progressive systemic infection. She now had an exit strategy.

If asked by patients, most doctors are willing to discuss quality of life at the expense of quantity of life. In elder care, that conversation should include a discussion about futile treatments vs. making sure the last days on earth are comfortable. As Sherwin Nuland wrote in “How We Die,” “The real event taking place at the end of our life is our death, not the attempts to prevent it.”

Therefore, discussions with our trusted physicians should evolve from how to die later to how to die better, including with an exit strategy.

In my father’s case, he was clear at the end that he wanted to avoid further interventions designed to prolong life. At age 93, after six months in hospice, medicated for comfort, he died quietly at home.

Complete Article HERE!

Saying goodbye: Inside the world’s first children’s hospice

FOR a parent whose child is facing death, the future looks bleak. But at the world’s first children’s hospice, staff ensure that life is celebrated, as our writer reports.

By Rachel Carlyle

'Death happens, but the living goes on'
‘Death happens, but the living goes on’

At the end of the main corridor in Helen House, the world’s first children’s hospice, lies the Little Room. It’s smaller than the other eight bedrooms, simply furnished, and it’s the place parents dread.That’s because it’s where they come when their child has died: the room is kept cold to preserve the body and give the family time to say their goodbyes and give their last hugs. Of course, there are tears here but also laughter and smiles: the room has been decorated as a fairy castle and a spaceship over the years. One time, on a boiling hot day, a grieving family took a break for a water fight on the grass outside.

“We could hear squeals from the parents and siblings of the child who had died,” recalls Clare Periton, chief executive of the hospice in Oxford. “It’s moments like those that capture what we’re about here. Death happens, but the living goes on, there’s still room for fun, and no one judges you.“Parents who come here with their children are scared by the Little Room, but afterwards say it made all the difference to be able to have time with them to say their goodbyes and come to terms with the fact that their child is cold.”

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The normalising of death as part of life is what makes hospices so special

We can’t see the room today because it’s being used, but we visit the Starfish Room, the equivalent in Douglas House, the sister hospice for 16 to 35 year olds next door. The room is at the centre of the seven-bedroom building. There’s a discreet door at the back that leads directly outside via a long corridor.It was designed for coffins to enter and leave by – but no one can ever remember it being used. “The young people tell us they came in through the front door and they will go out of the front,” says Clare. This normalising of death as part of life is what makes hospices so special.On the bed in the Starfish Room is a lovingly hand-stitched quilt featuring a parable that explains the room’s name. A man spends his days rescuing beached starfishes by throwing them back into the sea. “What possible difference are you making?” someone asks. “There are so many stranded starfish.”“It makes a difference to this one,” the man replies, holding up a single starfish.“It’s a philosophy to live by,” says Clare. “You can’t change the world completely but you can make a difference to your bit. This is what we are trying to do here.”

Helen House was the world’s first children’s hospice when it opened in 1982. It was the result of a friendship between a nun, Sister Frances Dominica, and the parents of a terminally ill two year old, Helen Worswick, desperate for respite care. It was built in the grounds of the convent; Douglas House was added in 2004.

'You can’t change the world completely but you can make a difference to your bit'
‘You can’t change the world completely but you can make a difference to your bit’

It should be a subdued place because what could be more upsetting than a child’s death? But there’s a bustling, playful atmosphere. “It’s full of laughter and smiles. Staff aren’t moping about, there’s none of that tilted head earnest sympathy,” laughs Clare, who took over six months ago but has worked at the hospice for 11 years having trained as a nurse.“Children need to play and have fun, no matter what is going on in their lives.”There’s a huge, airy playroom at the heart of the modern building. There’s a teacher on site, a games room, a hot-tub room (where parents can take a well-deserved break), music room, sensory room and two family flats. There are 250 children on the books at any one time: some come here for end-of-life care in the last few weeks, others with life-limiting conditions come for respite care a few times a year to give their parents a break.Staff go to incredible lengths to make children’s last days happy and memorable: one 21 year old with cystic fibrosis was desperate to see the new Paddington film before he died, but the DVD hadn’t yet been released.Someone managed to get hold of a copy, it was couriered up from the company in London and a red carpet duly hired for the full premiere experience. Just yesterday, a six-year-old girl got her dearest wish: a trip round Oxford in a horse and cart.

As well as what Clare calls the “sparkly” experiences, they organise ordinary trips to the pub or to Costa Coffee for very ill or disabled young adults who want a slice of normal life.

'We know more than anyone how your whole life can change in a split second'
‘We know more than anyone how your whole life can change in a split second’

At the moment there are four children in Helen House, plus one in the Little Room, and another three children waiting for end-of-life care, being visited at home by outreach nurses.There are 160 staff, ranging from doctors to cleaners and fundraisers, a teacher, music therapist, aromatherapist, play specialists and an army of volunteers. It costs £5.1 million a year to run both houses; Government funding makes up 12 per cent, but the rest is fundraising: £1 million comes in from 37 charity shops.Fundraising was challenging last year, possibly due in part to the negative publicity surrounding their founder, Sister Frances Dominica, who faced historic sexual-abuse allegations. She was under investigation but the CPS dropped the case. She denies the allegations, but had to resign from her role as a trustee of the hospice last December.All 54 children’s hospices in the UK have a similar struggle for funding: on average they receive only 21 per cent of their costs from local Government and health commissioners; the rest comes from fundraising. Many hoped David Cameron would introduce more central Government support, as his late son Ivan was cared for at Helen House and he has spoken fondly of the care the family received there. But nothing has happened as yet.

Perhaps it’s because as a society we don’t like to talk about children dying – unlike in past generations where child mortality was common.

“My great grandmother had 16 pregnancies,” says Clare. “They were used to child mortality. But now it’s a subject we don’t like to discuss.”

We adults may have lost this matter-of-fact attitude to death, but young children haven’t. “We’ve heard siblings talking in the playroom. One will say, ‘My sister has died,’ and the other will say, ‘Oh, my brother died,’ and they will debate ‘which one is the deadest’ or who died first,” says Clare. Her own daughters, aged eight and 10, recently had a discussion about how you would find a coffin for a tall man. “You could fold him in half,” suggested one.

Staff find that children at the hospice often know they are going to die, even if adults have not told them. Outreach nurse Shirley Jones recalls a boy of five who was nearing the end of life, but his parents were convinced he didn’t know.

One day he said he wanted everyone to go up to his bedroom and give presents to his brother, whose birthday was in a couple of months. They were puzzled but did it. He died later that day. “Whether they have knowledge or whether they are picking up on cues from family – sensing anxiety, we don’t know,” says Shirley.

Children are often accepting of death (rarely do nurses hear gravely ill children ask, “Why me?”), but teens and young adults are often angry, perhaps because they have more comprehension of what they are going to miss.

When it comes to end-of-life, children often know what they want. One seven-year-old boy who knew he was going to die was determined only to allow staff to give him limited help when the time came. He even had his wishes laminated to the equipment next to his bed.

When the time came, they abided by his wishes, even though his parents must have wanted to try anything to prolong his life. “His mum was incredibly gracious. She was so terribly upset but she did not ask us to carry on. I had so much admiration for her,” recalls Clare.

When a child dies, the impact on parents is all-consuming; bereavement teams at the hospice are often in touch with them years afterwards. “When a child dies, parents have lost the future,” says Clare. “We help them find a new normal, because it’s never the same again.”

By rights, her work should be gruelling and sad, but she loves it. “I’ve only had three bad days in 11 years here – and only one of them was to do with a death. Working here makes me treasure time with my own children. It makes me listen to them, hug them and spend as much time as possible with them. We know more than anyone how your whole life can change in a split second.”

Complete Article HERE!

How do people die from cancer? You asked Google – here’s the answer

Every day millions of internet users ask Google life’s most difficult questions, big and small. Our writers answer some of the commonest queries

By

 ‘Contrary to popular fears, patients attest that awareness of dying does not lead to greater sadness, anxiety or depression.’
‘Contrary to popular fears, patients attest that awareness of dying does not lead to greater sadness, anxiety or depression.’

Our consultation is nearly finished when my patient leans forward, and says, “So, doctor, in all this time, no one has explained this. Exactly how will I die?” He is in his 80s, with a head of snowy hair and a face lined with experience. He has declined a second round of chemotherapy and elected to have palliative care. Still, an academic at heart, he is curious about the human body and likes good explanations.

“What have you heard?” I ask. “Oh, the usual scary stories,” he responds lightly; but the anxiety on his face is unmistakable and I feel suddenly protective of him.

“Would you like to discuss this today?” I ask gently, wondering if he might want his wife there.

“As you can see I’m dying to know,” he says, pleased at his own joke.

If you are a cancer patient, or care for someone with the illness, this is something you might have thought about. “How do people die from cancer?” is one of the most common questions asked of Google. Yet, it’s surprisingly rare for patients to ask it of their oncologist. As someone who has lost many patients and taken part in numerous conversations about death and dying, I will do my best to explain this, but first a little context might help.

Some people are clearly afraid of what might be revealed if they ask the question. Others want to know but are dissuaded by their loved ones. “When you mention dying, you stop fighting,” one woman admonished her husband. The case of a young patient is seared in my mind. Days before her death, she pleaded with me to tell the truth because she was slowly becoming confused and her religious family had kept her in the dark. “I’m afraid you’re dying,” I began, as I held her hand. But just then, her husband marched in and having heard the exchange, was furious that I’d extinguish her hope at a critical time. As she apologised with her eyes, he shouted at me and sent me out of the room, then forcibly took her home.

It’s no wonder that there is reluctance on the part of patients and doctors to discuss prognosis but there is evidence that truthful, sensitive communication and where needed, a discussion about mortality, enables patients to take charge of their healthcare decisions, plan their affairs and steer away from unnecessarily aggressive therapies. Contrary to popular fears, patients attest that awareness of dying does not lead to greater sadness, anxiety or depression. It also does not hasten death. There is evidence that in the aftermath of death, bereaved family members report less anxiety and depression if they were included in conversations about dying. By and large, honesty does seem the best policy.

Studies worryingly show that a majority of patients are unaware of a terminal prognosis, either because they have not been told or because they have misunderstood the information. Somewhat disappointingly, oncologists who communicate honestly about a poor prognosis may be less well liked by their patient. But when we gloss over prognosis, it’s understandably even more difficult to tread close to the issue of just how one might die.

Thanks to advances in medicine, many cancer patients don’t die and the figures keep improving. Two thirds of patients diagnosed with cancer in the rich world today will survive five years and those who reach the five-year mark will improve their odds for the next five, and so on. But cancer is really many different diseases that behave in very different ways. Some cancers, such as colon cancer, when detected early, are curable. Early breast cancer is highly curable but can recur decades later. Metastatic prostate cancer, kidney cancer and melanoma, which until recently had dismal treatment options, are now being tackled with increasingly promising therapies that are yielding unprecedented survival times.

But the sobering truth is that advanced cancer is incurable and although modern treatments can control symptoms and prolong survival, they cannot prolong life indefinitely. This is why I think it’s important for anyone who wants to know, how cancer patients actually die.

Cancer cells release a plethora of chemicals that inhibit appetite and affect the digestion and absorption of food’
Cancer cells release a plethora of chemicals that inhibit appetite and affect the digestion and absorption of food’

“Failure to thrive” is a broad term for a number of developments in end-stage cancer that basically lead to someone slowing down in a stepwise deterioration until death. Cancer is caused by an uninhibited growth of previously normal cells that expertly evade the body’s usual defences to spread, or metastasise, to other parts. When cancer affects a vital organ, its function is impaired and the impairment can result in death. The liver and kidneys eliminate toxins and maintain normal physiology – they’re normally organs of great reserve so when they fail, death is imminent.

Cancer cells release a plethora of chemicals that inhibit appetite and affect the digestion and absorption of food, leading to progressive weight loss and hence, profound weakness. Dehydration is not uncommon, due to distaste for fluids or an inability to swallow. The lack of nutrition, hydration and activity causes rapid loss of muscle mass and weakness. Metastases to the lung are common and can cause distressing shortness of breath – it’s important to understand that the lungs (or other organs) don’t stop working altogether, but performing under great stress exhausts them. It’s like constantly pushing uphill against a heavy weight.

Cancer patients can also die from uncontrolled infection that overwhelms the body’s usual resources. Having cancer impairs immunity and recent chemotherapy compounds the problem by suppressing the bone marrow. The bone marrow can be considered the factory where blood cells are produced – its function may be impaired by chemotherapy or infiltration by cancer cells.Death can occur due to a severe infection. Pre-existing liver impairment or kidney failure due to dehydration can make antibiotic choice difficult, too.

You may notice that patients with cancer involving their brain look particularly unwell. Most cancers in the brain come from elsewhere, such as the breast, lung and kidney. Brain metastases exert their influence in a few ways – by causing seizures, paralysis, bleeding or behavioural disturbance. Patients affected by brain metastases can become fatigued and uninterested and rapidly grow frail. Swelling in the brain can lead to progressive loss of consciousness and death.

In some cancers, such as that of the prostate, breast and lung, bone metastases or biochemical changes can give rise to dangerously high levels of calcium, which causes reduced consciousness and renal failure, leading to death.

Uncontrolled bleeding, cardiac arrest or respiratory failure due to a large blood clot happen – but contrary to popular belief, sudden and catastrophic death in cancer is rare. And of course, even patients with advanced cancer can succumb to a heart attack or stroke, common non-cancer causes of mortality in the general community.

You may have heard of the so-called “double effect” of giving strong medications such as morphine for cancer pain, fearing that the escalation of the drug levels hastens death. But experts say that opioids are vital to relieving suffering and that they typically don’t shorten an already limited life.

It’s important to appreciate that death can happen in a few ways, so I wanted to touch on the important topic of what healthcare professionals can do to ease the process of dying.

In places where good palliative care is embedded, its value cannot be overestimated. Palliative care teams provide expert assistance with the management of physical symptoms and psychological distress. They can address thorny questions, counsel anxious family members, and help patients record a legacy, in written or digital form. They normalise grief and help bring perspective at a challenging time.

People who are new to palliative care are commonly apprehensive that they will miss out on effective cancer management but there is very good evidence that palliative care improves psychological wellbeing, quality of life, and in some cases, life expectancy. Palliative care is a relative newcomer to medicine, so you may find yourself living in an area where a formal service doesn’t exist, but there may be local doctors and allied health workers trained in aspects of providing it, so do be sure to ask around.

Finally, a word about how to ask your oncologist about prognosis and in turn, how you will die. What you should know is that in many places, training in this delicate area of communication is woefully inadequate and your doctor may feel uncomfortable discussing the subject. But this should not prevent any doctor from trying – or at least referring you to someone who can help.

Accurate prognostication is difficult, but you should expect an estimation in terms of weeks, months, or years. When it comes to asking the most difficult questions, don’t expect the oncologist to read between the lines. It’s your life and your death: you are entitled to an honest opinion, ongoing conversation and compassionate care which, by the way, can come from any number of people including nurses, social workers, family doctors, chaplains and, of course, those who are close to you.

Over 2,000 years ago, the Greek philosopher Epicurus observed that the art of living well and the art of dying well were one. More recently, Oliver Sacks reminded us of this tenet as he was dying from metastatic melanoma. If die we must, it’s worth reminding ourselves of the part we can play in ensuring a death that is peaceful.

Complete Article HERE!

Q+A: How Should You Talk to Your Doctor About End-of-Life Care?

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No one wants to talk about death. But when a loved one is faced with old age or a serious illness, there are choices that need to be made. How does the patient feel about life-sustaining measures in the face of terminal illness? Does he or she have strong feelings about mechanical breathing, CPR or chemotherapy? What factors will be most important to the dying person — physical comfort, no pain, treatment costs?

As an emergency medicine doctor, Laura Vearrier, MD, a clinical assistant professor at Drexel University College of Medicine, sees plenty of family members having to make these decisions for sometimes impaired or incapacitated patients. Stress is high. Emotions are involved. What’s worse, there isn’t time for physicians to sit down and properly explain medical procedures or lay out options.

Advanced care planning allows people to maintain authority in their medical decision-making. However, the current legal framework for advance directives make them inadequate as an effective end-of-life planning tool, argues a recent paper from Vearrier, published in the HealthCare Ethics Committee Forum.

Her solution? More mandatory, frank communication between primary care physicians and their patients about the end of life and medical care — long before a patient is unhealthy.

Vearrier weighed in on problems with the current end-of-life care paradigm and how it can be improved.

What is end-of-life planning? Who does it primarily concern?
A lot of people don’t start talking about end-of-life care until they have a chronic disease, but advance care planning is really something that every adult should be thinking about early on, long before a time of illness, when there are a lot of emotions involved. End-of-life care decisions fall on a continuum that ranges from a focus on prolonging life with all available technology, to a focus primarily on comfort. There are decisions people need to make about, for instance, whether having more time alive with family and friends is preferable, even if that means prolonging suffering and giving up independence. Advance directives, commonly known as a living will, allows you to document your end-of-life medical treatment preferences. A healthcare proxy allows you to designate a person you trust as a decision maker on your behalf.

How did you become interested in the issue of end-of-life planning?
In the Emergency Department, I see many patients who are critically ill, and their families haven’t thought about their options ahead of time. When doctors present families with options about their loved one, they often don’t understand what the doctor is talking about, much less what their loved one would want. And with having to deal with the stress of a sick family member, it’s even harder to process new information.

 How common are living wills?
According to the 2008 Advance Directives and Advance Care Planning: Report to Congress, only 18 to 36 percent of the adult population has completed advance directives. And even those with serious medical conditions have completed advanced directives at only a slightly higher rate. A study of cancer patients in 2000 showed that only 9 percent of patients had discussed advanced directives with their oncologists, and only 23 percent of the remaining patients indicated they wished to do so. There are also differences between racial and socioeconomic groups. The report shows that white race and a higher socioeconomic status are related to a greater likelihood of having a living will.

What is the Physician Orders for Life-Sustaining Treatment Paradigm?
POLST was developed as a response to the failed process of advance directives as an end-of-life planning tool, but it is not intended to replace advanced directives. It is a health care planning tool that encourages doctors to speak with patients who are very ill and can be transferred between different health care facilities. A POLST form is completed by a health care professional rather than a patient. The POLST form identifies “Do Not Resuscitate” orders, but it also lists other treatment preferences, like whether a patient would wish to go to a hospital or stay home.

You are critical of the POLST form in your recent paper. Why?
POLST has played an important role in increasing the documentation of end-of-life preferences. However, the problem remains that people do not really understand a lot of their options. The POLST form uses a lot of specialized jargon, and it can be even more confusing than advance directives. Even social workers who discuss the forms with their patients have a poor understanding of some of their options. So when it comes time for a physician to interpret the orders, they might not really be fulfilling the patient’s treatment wishes.

What surprised you the most when researching this topic?
I was surprised about how poorly people understand their options when it comes to having to make decisions about end-of-life care and also how uncommonly people discuss it with their physicians. Physicians may not even be aware that their patients have an advance directive.

What’s the solution?
Increased communication that occurs on a routine, non-emergent basis. I think talking about the end of life and medical care should be a discussion that starts when someone is healthy, with the awareness that it’s something that may, and probably will, change over time. Since treatment preferences may change with age, health status and the current state of medical technology, discussions should occur on a yearly basis with every adult patient in the case that something happens to them. Also, everyone should be discussing their preferences with their families.

A lot of physicians are hesitant or may feel poorly prepared to have these discussions, which is why they don’t happen until someone is ill or has exhausted all of their treatments. Then lack of time becomes a barrier. To change this, it should be something that’s done on a routine basis at every yearly check-up with a primary care doctor. It’s just like the “in case of an emergency” safety protocols that are communicated on every single airplane flight. It’s repeated every time, so everyone is aware what could happen and what the procedure would be. There needs to be a culture shift, so that patients are educated and empowered about their treatment options, in case they are ever in a position where they are no longer capable of making those decisions.

Complete Article HERE!

Opening the Window

This doula helps clients make the most of death

by

Death doula Shelby Kirillin chats with client Kim McGaughey.
Death doula Shelby Kirillin chats with client Kim McGaughey.

The Angel of Death is surprisingly upbeat.

“I know death is sad, but what’s wrong with dying?” Shelby Kirillin says, green eyes alight. “It’s OK. We’re all going to do it.”

Kirillin is a death doula — someone who guides the dying, and their families, through the end of life.

“You have written so many amazing chapters,” she tells her clients. “Write your last chapter. Put an exclamation point at the end! Make it end in a crescendo. So many people, I feel like, choose death because it’s just better than the hell that they’re living.”

In 18 years as an ICU nurse specializing in neuroscience, Kirillin witnessed too many bad deaths. She heard frantic families ask for every procedure possible in order to prolong life, instead of easing their loved one’s passing. She saw doctors who advocated continuing medical intervention, even when it was obvious that nothing more could be done.

Then in 2012, Kirillin, along with four Virginia Commonwealth University Medical Center colleagues, helped care for a fellow nurse who was dying of cancer. Their assistance allowed their friend to die at home, peacefully. And Kirillin found her new calling.

Kirillin began an apprenticeship with a death midwife in Canada and is completing her certification by the International End of Life Doula Association. Last year, she began practicing in Richmond. Insurance doesn’t cover her services; her fees are based on the time and level of support a client requires.

She’s not a hospice nurse, who manages patients’ medications and physical needs. She doesn’t give medical advice, nor is she a grief counselor. Rather, she is an “end-of-life transition coach,” as one client dubbed her, who guides people through the emotional and spiritual experience of death.

“You have written so many amazing chapters,” she tells her clients. “Write your last chapter. Put an exclamation point at the end! Make it end in a crescendo. So many people, I feel like, choose death because it’s just better than the hell that they’re living.”

“I can’t take away the fact that you have to kneel in a mountain of sorrow,” she says, paraphrasing end-of-life guru BJ Miller. “That can’t be avoided. But what I can do — I’m very much like a birthing doula — I hold the space.”

Family members may be mute in their grief, or mired in doubt, or consumed by guilt. Kirillin helps them to act, to labor along with their loved one. “It’s a beautiful day,” she may say. “Let’s open these windows.” Or, “You want to lay next to your mom? Here, let me move her. Lay next to your mom. Hold her. It’s okay.”

Mary Bolling “Mary Bo” Gassman found out she had cancer just seven weeks before she died. Her husband, Ken Gassman, couldn’t accept it. “I’m an alpha male, OK? And I’ve always been the family patriarch,” Gassman says. He made an executive decision: “We’re going to beat this cancer.”

As a result, Gassman and his oldest daughter, Elizabeth Gassman Chéron, didn’t agree on how best to manage Mary Bo’s symptoms. Chéron wanted to relieve her mother’s suffering; to her father, administering morphine meant bowing to the fact that his beloved wife was dying.

Kirillin became the ambassador, mediating between father and daughter. She encouraged Gassman to stay focused on the goal: not curing the incurable, but giving his wife a reason to wake up the next day, and the day after that. When Chéron admitted, “I just don’t know what to do,” Kirillin told her to trust herself. “You’re doing great,” she said.

On a cool October afternoon, Kirillin said it was time to open the windows. The breeze carried in the sweet scent of wildflowers, Gassman remembers. “A minute or two later, it was gone.” It was 4:32 p.m., and Mary Bo had passed away. “I think Shelby knew how she was going to ride out of there,” he says.

While Kirillin serves the family and friends of those soon to depart, she is chiefly concerned with the desires of the dying. Long before the curtain closes, she says, everyone should clearly state what living means to him or her. Kirillin’s own advance medical directive says, “If I can’t go to a baseball game, follow it, enjoy it and, the next day, remember it, I don’t want to survive.” It’s funny. But it’s true.

When dying becomes a possibility, she speaks with her clients about how they envision their last days. Most people say they want to die at home, for instance, but a hospital may offer more comfort for a patient who’s short of breath.

Burials, cremations, dissolving: the new ways to die well

BY STEPHANIE BOLAND

new ways to die well

Life after death is changing – thanks to scientific innovation. The best time to plan is now.

What happens to us after we die? It is one of the most profound spiritual questions, but also a practical puzzle. After all, whatever you believe happens to the soul after death – if you believe in a soul at all – there is irrefutably a body for someone to deal with. While there are many emotions that can make it hard to think about what you want to happen to your body, it need not be traumatic.

At least, that is what the researchers at the Corpse Project want to remind people. Set up last autumn and funded by the Wellcome Trust, this UK research programme has just published its first findings on what we might do with our bodies after we die.

I meet Sophie Churchill, the project’s founder, at a café in Queen Mary University of London. The goal, she tells me, is to help find ways to “lay our bodies to rest, so that they help the living and the Earth”. It’s not a case of being dispassionate but rather a quest to balance the social and cultural aspects of death with the scientific.

Sometimes, aspects of death that people initially baulk at can become more acceptable through conversation. One relatively new process, sold as a greener alternative to cremation, involves dissolving the body in heated alkaline water. “I was with 15-year-old urban teenagers, and you could see them scowling at the thought of being dissolved. But the more we talked about it and considered how odd it would once have seemed to go into machines and be cremated, [the more] they started to reconsider.”

Churchill points out that cremation, too, is a relatively recent phenomenon. The first official cremation in the UK took place in 1885, and it was only in the 1960s that the Catholic Church, for instance, accepted the practice and lifted its ban. Now, over 70 per cent of people who die in Britain are cremated.

Churchill is discovering that people can be open-minded, even if their beliefs are initially strongly held – though she admits that it may “still be a generation or two before new forms are accepted”.

“People will say, ‘Mourners always need a place to return to, to memorialise.’ But there are lots of people who do scatter ashes.” So, part of rethinking death might involve reassessing what we are comfortable with. I wonder if our general reluctance to talk about death makes it less likely that we will encounter different perspectives on how to deal with bodies.

Churchill’s studies with teenagers seem to support this. When asked to think about their own deaths, many of them were quick to engage with the idea, she says – “Being sent out to sea and burned in a boat, Viking-style, seemed to be very popular!” – and it was often their teachers who were more squeamish.

The Corpse Project is just one of a growing number of organisations committed to tackling the discomfort around death and dying. The Order of the Good Death was founded in 2011 by the mortician Caitlin Doughty and aims to “make death part of your life”.

The group of academics, funeral industry professionals and artists encourages people to educate themselves about dying, and even to become “death positive” by learning to accept and engage with their mortality. Its website covers everything from sky burials, in which corpses are left to be eaten by the birds, to how it feels to bury a relative if you’re a funeral director.

So what are the best options for someone wanting an environmentally friendly death? Until new methods such as dissolving become easily available, small tweaks can make a big difference. Doing cremation well, for instance, is important: the Corpse Project’s work partly involves investigating what sort of schedule allows crematoriums to operate at maximum efficiency.

If you want to be buried, it might even be a case of choosing a sustainable wood for your coffin. The Corpse Project is also investigating optimum burial depths and whether burials could be done strategically to enrich the soil where this is needed.

“But science never changes opinion by itself,” Churchill says. Luckily, every death is different, and can be a chance to invent meaningful rituals that incorporate innovative methods. The important thing, she stresses, is to think about it early, as one would with a will or life insurance.

“One day, this hand . . .” – she lays her hand on its back, limply – “. . . will do this. Twelve hours later, it’ll be a bit pale and clammy. And that will be it. The day will go on, with people going on having coffees, and so on.” She looks around her at the students milling in the sunshine. “To me, the last big challenge is to do that well.”

Complete Article HERE!