Tag: Conscious Dying

Posted on

Facing the Abyss: Planning for Death

By Kevin Dieter

“The hurrier you go, the behinder you get.”

 
Puzzlingly, the older and more “seasoned” I become, the more this bit of Amish wisdom is true. Especially when it comes to reading. I don’t have time to read. So, I was surprised when I found myself reading a recent publication from the National Quality Forum. However, as serendipity would have it, I am so glad I did. This publication, “Strategies for Change: A Collaborative Journey to Transform Advanced Illness Care“ had me hooked with the introduction. They had the beautiful audacity to suggest that physicians can and do have the ability to engage in conversation about the taboo (their term) subjects of death and mortality. As I read further, I was rewarded with a section devoted to “peaceful death and dying.”

There has been debate about whether we truly live in a death denying culture. I believe that we do. Strongly so. Ernest Becker, in his Pulitzer prize winning book The Denial of Death, makes a compelling case that western societies are THE most death-denying in all of history. I see the results of this everyday. Our mortality, the inevitable finality of this life, is routinely disregarded as an essential contribution to the plan of care. The result is a series of squandered opportunities for healing and even transformation at the end of life. Very sick patients are referred to hospice without a prior discussion of goals of care and resuscitation status. Very sick patients travel from hospital to hospice house, often dying on route. But even more common is a never-ending procession of the dying patients and their loved ones who come to the end of life totally unprepared.

The poet W.H. Auden described death as “the rumble of distant thunder at a picnic.” It’s a brilliant metaphor. In my mind, in that scenario, we have 3 choices. The first choice is to totally ignore the thunder and hope that the storm blows north, but when the storm does hit, we will be totally unprepared and will be in some danger. The second choice is to recognize that the storm is coming, and to feel dread that it will totally ruin the remainder of the picnic, and yet do nothing to prepare for it. The third option is to recognize the threat that the thunder represents, to reorganize priorities and enjoy the good weather while you can, and then be packed and ready to seek shelter when the storm hits. I believe these metaphorical choices are similar to our society’s attitude toward death. Most of us choose the first 2 options in regards to our own mortality.

The medicalization of death and dying, increasingly prevalent following World War II, has placed physicians in a difficult situation. Advancements in medical technology, the rise of consumerism, and the strengthening voice of patient autonomy have encouraged society to give us the responsibility of managing death, but for the most part we are poorly trained and generally not inclined to do so. We have, however, made significant progress in helping patients and their families negotiate the myriad of decisions and break points they encounter as their health fails and they traverse the healthcare system. This progress, through many variations of advance directives, follows the thread of “quality of life.” I picture the patient as Indiana Jones, running through the jungle, dodging spears and traps, tumbling and rolling, and finally seeing the clearing in the trees. With the screen focused squarely on their face, I see the expression go from anticipation and relief to dread as they look down into the 10,000 foot abyss. Advanced Directives and Goals of Care discussions may get them through the jungle, but when it comes time to die, they are horribly unprepared. Very little time, they realize, was spent considering the quality of their death. It is time to die, and they haven’t imagined themselves on this death bed.

Dying patients and their loved ones today enter a space totally unfamiliar. One hundred years ago, most Americans grew up in household where death occurred and dying was more accepted as a part of daily life. Today, many of us live on the surface of life, existing from Tweet to Tweet. Richard Groves calls this “the demon of busyness.” Our attention span has been measured in seconds. Dying, and being with the dying, often requires sitting with uncertainty for long periods of time. We are very uncomfortable being there. It often does not sound, look or smell nice. Dying is the ultimate time of transition for those involved in the loving and caring for the dying. Without experience, and with difficulty accepting uncertainty, many patients and families come to the dying time unaware of what to expect, and worse, how to prepare.

We need to work much harder at preparing our patients for end-of-life. This is not our responsibility alone, however. There seems to be a grassroots movement developing that encourages open discussion about death and dying. Social media is exploding with new and increasingly innovative ways to initiate and encourage this dialogue. The demon of busyness is being met head on by card games, like “GoWish”, and interactive art such as the “Before I Die “ walls. These social instruments allow our society to begin the uneasy discussion about what has been taboo. In medieval times, the practice of “ memento mori,” a constant gentle reminder of their own mortality, served the purpose of improving the quality of their life,  But it also improved the quality of their death. They heard the thunder, they prepared for it, and they enjoyed the picnic.

We can, and should, be part of the discussion. We should initiate it and foster it. Consider hosting a Death Cafe or buy and distribute GoWish card games. Volunteer at a local hospice doing bedside vigils, and write about what you learn. We can become more comfortable in talking about quality of death. We can improve the quality of our patients lives by helping them consider the quality of their dying. It will require that we  prepare ourselves by facing our own mortality.  We can and should be living and breathing versions of memento mori. We should not run and hide. Our death denying culture needs leaders to help our very sick and dying face the abyss. If not us, then who…?

Complete Article HERE!

Posted on

How to write about death

By Michael Upchurch

[I]n a beautiful passage, early on in her new book, Haitian-American author Edwidge Danticat explains, “We write about the dead to make sense of our losses, to become less haunted, to turn ghosts into words, to transform an absence into language.”

Danticat’s own masterpieces — her memoir of her father’s and uncle’s deaths, “Brother, I’m Dying”; her novel-in-stories about a Haitian torturer, “The Dew Breaker”; and her early collection of tales, “Krik? Krak!” — have done exactly that. Her prose is often cool and taut on the surface, yet also rife with hidden currents and flashes of warmth. At her best, Danticat taps into such tough subject matter as political exile, mob violence, and refugee desperation with a trickless, spellbinding clarity.

The strongest thread in “The Art of Death: Writing the Final Story” (one in a series of Graywolf Press titles addressing specific aspects of the craft of writing) is her account of her mother’s reaction to being diagnosed with stage 4 ovarian cancer.

“In the car on the way home,” Danticat remembers, “we were both lost in a terrible silence that should have been filled with tears. At a red light, where I stopped for too long, my mother spoke up for the first time since we’d heard the news and warned, ‘Don’t suddenly become a zombie.’ She was telling me not to lose my good sense, to keep my head on my shoulders.”

Her mother brought humor even to the most humiliating hospital situations. To a nurse who had trouble drawing blood from her, she wisecracked, “It’s too bad you’re not like those vampires on TV who just put their teeth on someone’s neck.” When, toward the end, she opted out of repeated rounds of chemotherapy, she couldn’t have been more straightforward about it. “I’m not necessarily dying either today or tomorrow,” she said. “But we all must die someday.”

Danticat’s portrait of her is kind and loving. It also is, inevitably, anguished in its sense of loss. “I was shocked,” she says, “by how quickly many others expected me to bounce back and rejoin the world.”

But “The Art of Death” isn’t simply a memoir. It looks at how other authors have dealt with death in their writing. Danticat’s focus is on Tolstoy, Camus, Chekhov, Gabriel García Márquez, Toni Morrison, Audre Lorde and more than three dozen others. She touches on her own work as well.

It’s an impossible task, and Danticat’s attempts to order her thoughts on suicide, bereavement, and death-row prisoners’ experience can be unwieldy. She’s less assured when analyzing someone else’s text than she is when evoking her own experience. Her extensive commentary on Morrison’s novels, for instance, can’t compete with Danticat’s direct dealings with death.

Danticat is a straight shooter as a writer, so perhaps it’s not a surprise that she gives no nod to the thumb-nosing irreverence toward death you find in Laurence Sterne’s “The Life and Opinions of Tristram Shandy, Gentleman” (or, more recently, Monty Python). Some readers may also feel it odd that she omits such obvious candidates as Virginia Woolf and — ahem — Shakespeare from this discussion.

But a full study of how authors address death in their work would run to multiple volumes, and the format of Graywolf’s “The Art of” series puts firm constraints of length on its authors.

Danticat does make many essayistic observations that serve the book well — conclusions that she, looking inward, came to on her own. She notes the way we sometimes find ourselves “rehearsing” our future bereavements. She questions how one can “prepare to meet death elegantly.”

“We are all bodies,” she writes, “but the dying body starts decaying right before our eyes. And those narratives that tell us what it’s like to live, and die, inside those bodies are helpful to all of us, because no matter how old we are, our bodies never stop being mysterious to ourselves.”

For authors, the elusive nature of death never stops posing a challenge.

“Having been exposed to death does help when writing about it,” Danticat notes, “but how can we write plausibly from the point of view of the dying when we have not died ourselves, and have no one around to ask what it is like to die?”

Far from being morbid, this small book is a bracingly clear-eyed take on its subject.

Complete Article HERE!

Posted on

Why it’s so hard to die in peace

By Robert J. Samuelson

[F]or those of us who had hoped that American attitudes toward death were shifting in ways that would promote a wider reconstruction of the health-care system, there’s discouraging news from Health Affairs, the preeminent journal of health policy. It devotes its latest issue to “end-of-life” care and finds that — at least so far — the power to make health care more compassionate and cost-effective is limited.

That was the vision. Americans would become more realistic about death. Through “living wills,” they’d reject heroic — often futile — treatment to keep them alive. Health spending would be lower (by one estimate, a quarter of Medicare spending occurs in the last year of life). People would die with dignity. They’d be spared needless suffering.

Superficially, the vision seems to be triumphing, according to the 17 studies in Health Affairs. By one study, a third of American adults — and nearly half those 65 and older — have some sort of living will. From 1999 to 2015, the share of Americans who died in hospitals dropped from more than half to 37 percent. Over the same period, the number dying at home or in a hospice rose from less than a quarter to 38 percent. Moreover, at 8.5 percent of health costs, spending in the last year of life is lower in the United States than in some other countries.

But on inspection, the gains seem less impressive. The share of people with living wills has remained stuck for six years. According to another study in Health Affairs, the increase in hospice care is not substituting for expensive hospital care but adding to it. Said the study by Melissa Aldridge of Mount Sinai hospital in New York and Elizabeth Bradley of Vassar College:

“What has emerged [is] a relatively new pattern of hospice use. . . . Hospice enrollment [has become] an ‘add-on’ in health care after the extensive use of other health care services and within days of death.”

Patients receive expensive care until nearly the end, when they’re switched to hospice care. This obviously limits the potential for reducing costs and for relieving patients’ suffering. In addition, spending for the last year of life, though significant, is still a small share of total spending, refuting the argument that the high cost of dying explains why U.S. health care is so costly.

“We found that U.S. health spending [during the last year of life] was less than one-tenth of total U.S. health care spending [8.5 percent] and thus cannot be the primary cause of why U.S. health care is so much more expensive than care in other countries,” concluded another study in Health Affairs headed by Eric French of University College London.

(The fact that the effect on Medicare is much larger reflects simple arithmetic: Because Medicare represents only about a fifth of total U.S. health spending, the spending in the last year is being compared with a smaller base.)

None of this means that end-of-life care can be ignored. Indeed, the problems will almost certainly worsen, because much care-giving is by families and friends. Already, 29 percent of the adult population — two-thirds of them women — consider themselves caregivers.

As the population ages, the burdens will grow. In 2010, the ratio of potential caregivers (people 45 to 64) to those aged 80 and older was 7-to-1; by 2030, it’s projected to be 4-to-1. Alzheimer’s cases are increasing. Spending pressures on Medicare and Medicaid will intensify.

Just whether the persistence of high-cost care reflects good medicine, a deep human craving to cling to life, or both is unclear. But the rhetoric about “end-of-life” care has changed more than the reality. To the question — Can we die in peace and with dignity? — the answer is “not yet.”

Complete Article HERE!

Posted on

Want Control Over Your Death? Consider A ‘Do Not Hospitalize’ Order

Eighty percent of terminally ill patients say they don’t want end-of-life care to be intensive.

By Ann Brenoff

Eighty percent of terminally ill patients say they want to avoid hospitalization and intensive care at the end of their lives. But such hospital stays nevertheless occur fairly frequently ― even though they don’t seem to make much difference. Studies have shown that people who received less intense care in the last six months of life did not have a higher mortality rate than people who received more intense care.

So it’s worth asking why elderly and terminally ill patients are put through stressful hospitalizations, procedures and medical tests that only wind up blemishing their final days.

One reason: Hospitals can do it, and Medicare will pay for it.

A report from the Dartmouth Institute for Health Policy and Clinical Practice notes that “the intensity of care in the last six months of life is an indicator of the propensity to use life-saving technology.” The institute found that if you live in an area that has a big teaching hospital with the latest medical equipment, chances are you’ll spend more of your final days admitted to it. In 2014, patients in Boise, Idaho, spent 3.9 days of the last six months of their lives hospitalized, compared to 13.7 days for New York City patients.

Some patient advocates and chronically ill patients want to reduce end-of-life hospitalizations through the use of advance care planning directives. The most common of these is the “do not resuscitate” order, which instructs the hospital and doctors that if your heart stops beating or you stop breathing, you do not wish to have CPR. Absent such a directive, hospital staff will try to help any patient whose heart or breathing has stopped.

Far less common ― but potentially much further-reaching ― are “do not hospitalize” directives, which stipulate that you don’t want your caregivers to take you to the hospital for care. A recent study found that these orders are indeed effective at preventing unwanted hospitalizations.

A small research study of nursing home residents in New York state found that overall, 6 percent of residents had DNH orders. Of those people, just 3 percent spent time in a hospital during their last 90 days of life, compared to 6.8 percent of people in the study who did not have a DNH order. In other words, the people who did not have an order were more than twice as likely to be hospitalized.

On a practical level, having a directive that says you don’t want to be admitted to a hospital ― except under certain conditions, specified by you ― basically means a nursing home or family caregiver will do what they can to treat you and let nature take its course. Hospice care is available through Medicare as well.

Family caregivers sometimes mistakenly think “do not hospitalize” means “do not treat.” But that’s not the case. A DNH order can stipulate that under specific circumstances, like if you are bleeding or in extreme pain, you do, in fact, want to be treated at a hospital.

Advance medical directives have been publicly encouraged for a long time, yet only 38 percent of Americans have them, according to a recent study. Perhaps it’s because death and dying are topics that make us uncomfortable. Or perhaps it’s just that directives don’t always work.

Doctors are not legally bound to follow your advance directive. The law gives them and others legal immunity if they follow your wishes ― but they are not obligated to do so. ƒIn fact, doctors can refuse to comply with your wishes if they have an objection of conscience or consider your wishes medically inappropriate. If that’s the case, they have an obligation to transfer you to another health care provider who will comply, according to the American Bar Association. But this is hardly a guarantee that your directive will ultimately be carried out.

A bigger problem may come from the ambulance crew. Advance medical directives are pretty ineffective once someone dials 911. The job of a first responder is to attempt to resuscitate the patient and transport them to a hospital. If you don’t want that to happen, why call?

Overall, DNH orders aren’t being widely used. In 2007, a Harvard Medical School researcher examined a national database of more than 91,000 nursing home residents with late-stage dementia, and found that just 7.1 percent had DNH directives.

But not everyone thinks that’s a bad thing. Dr. Rebecca Sudore, a geriatrician and medical professor at the University of California, San Francisco, said that while “DNH may be good for decreased costs, it is not always the best thing for the patient.”

“Although DNH may be appropriate for some patients, I am concerned about what widespread DNH orders may mean on a population level,” Sudore told HuffPost in an email. “It may be appropriate for some, and not appropriate for many other people. I think that other outcomes such as controlled symptoms, relief of suffering, quality of life, satisfaction, caregiver stress etc. are as important, if not more important, than hospitalization.”

She noted that the “the goal should be to honor patients’ wishes and to provide care that alleviates suffering

“For some people, staying out of the hospital may accomplish their goals if they have access to good quality symptom control and care,” she said. “For other people who are suffering from symptoms that cannot be controlled at home or in a nursing home, then being in the hospital may be the best way to honor their wishes and prevent suffering.” And those wishes should be optional, she said, and subject to change.

Complete Article HERE!

Posted on

Caring for my beautiful husband as he died and through the days that followed

After Morgan’s second surgery he couldn’t remember Fiona’s name, but when asked who she was he answered “the love of my life”.

Who is the best person to care for someone who has died? Sometimes, a person who loved them when they were living. Dr Fiona Reid shares her experience caring for her husband Morgan throughout his illness and in the days after his death.

My husband Morgan was a kind, active and talented man. I felt tremendously lucky when I met him and continued to do so throughout our years together.

Morgan was remarkably fit, working as a stuntman internationally. He trained every day and could perform feats of acrobatics and skill. So it came as a shock when he called me at work one day to tell me he was having difficulty spelling. My heart fluttered and my stomach turned over. I felt an intense sense of dread but tried to convince myself that I was overreacting.

I told him to stay at home and that I would be there shortly. I drove home and held Morgan in my arms. We both knew something was very wrong. Despite this, I was totally unprepared for what happened next; for the utter horror of watching his scan and seeing the large tumour in his brain. My legs wobbled. I wasn’t supposed to be in the CT room because today I was a patient’s wife and not a doctor, but no-one thought to stop me. I still think that was one of the worst moments – the moment the world ended.

“Are there any gremlins in my brain?” he asked. “Yes darling, there is a gremlin”.

Like most people, we had a lot of hope. Morgan was young, he was strong, I was a doctor. Surely the 14-month prognosis was not for him.

He endured two operations on his brain, chemotherapy, radiation therapy, three experimental treatments and more chemotherapy before finally in January 2016 we decided to stop most treatments and concentrate on what little time we had left.

By this time my gorgeous husband was struggling. He had lost half his vision, he couldn’t use the right side of his body, his face was swollen from steroids and he was very tired. It never occurred to me that I wouldn’t look after him. I began to prepare for caring for him at home.

I was lucky to have some knowledge of what caring for someone who is dying might entail, but whatever I knew as a doctor was a fraction of the real experience. I prepared though. I read blogs written by other women who had cared for their husbands through brain cancer. I researched the timeline, what might happen, how his death might be, what symptoms may occur. I tried to predict.

I learned that we continue to hope, even when things are deteriorating. So even if we only get a “good hour” we hope for another later or tomorrow. We learn to reduce our expectations, such that a smile or a squeeze of the hand seems like a victory and the promise of recovery. Therefore in order to prepare, you must force yourself to remember what happened yesterday and last week. When there are more bad days or bad hours than good ones, you know it’s time to make arrangements.

The hardest thing was doing this whilst still trying to keep up Morgan’s spirits (not that he needed much help; he was extremely positive right until the end). I tried to be open with him, but he looked a little hurt when I had the hospital bed delivered. I felt I had let him down a little, but he was struggling to sit up and I was finding it difficult to lift him.

The bed came just in time. A few days later he was unconscious and although he woke up, he never spoke or left his bed again until after his death three weeks later.

You need equipment if you are to care for someone at home. I needed a bed, a wheelchair, a commode, a bath board and later continence aids, pads, eucalyptus oil, face-washers, medications, liquid thickeners and bed shampoo caps. Most things were rented. I bought consumables from disability companies and the palliative care nurses provided some.

Mostly I needed strength, love and support from family and friends – they believed I could do it and the thought of giving him up to someone else’s care frightened me more than caring for him myself.

I decided early that as much as I loved Morgan he didn’t belong to me, and he deserved to be surrounded by love as often as possible. So I declared an open house. I told everyone that they were welcome to visit at any time and without notice, but I also warned them that I would not be providing food or drink and that if the house was full or it was a bad time they may be asked politely to leave.

I also asked for two hours each day to be alone with Morgan. I put on nice music, burned a candle, bathed him, cuddled him and had some quiet time with him. This was precious time for me. Usually, he would smile at me, then fall asleep as I washed him. I put eucalyptus oil in hot water to freshen the air and massaged lavender oil into his temples to soothe him.

It was during this three weeks that I began to think about “after”. His death had now become a real inevitability; he had stopped talking, eating and swallowing, and he slept more often than not. It felt awfully disloyal to start planning his funeral before his death but I was desperate to do something that honoured him and I knew that every funeral I had been to so far would fall short of his expectations. I had little to go on. He did not want to talk about it. He did not want to be cremated, he wanted to be buried somewhere “with trees” – not a manicured cemetery, and without religion.

I knew I wanted to care for him until the last minute – I never wanted to let him go – but I had no idea what was possible. My experience of death so far had been as a doctor working in a hospital and try as we might it is a cold environment, people are rushed through the death of a loved one and bodies are moved quickly to morgues.

I stumbled on home death care. I was looking at local funeral directors and I felt empty – they all seemed so cold, so scripted, the coffin so pointless. I had no idea what to do. By chance, I found a wicker coffin on an Australian site and I thought it looked beautiful, natural, easily degradable and strangely, comfortable. I looked for the local retailer and found Natural Grace holistic funeral directors. It was as if Natural Grace was made for us.

I watched an interview with managing director Libby Moloney and instantly felt that she was special. Libby specialised in home death care and I knew I wanted to keep Morgan’s body at home. She knew a natural burial site which was 10 minutes away from where we were married. It seemed perfect.

I called Libby, speaking softly and feeling awful guilt as I sat in the same room as my sleeping and alive husband. She was incredibly compassionate. She seemed to understand my hesitation and confusion. She was supportive and never pushed.

I crawled into bed with Morgan on the night of Easter Sunday. I knew this was it. I put my arms around him and a few hours later he took a final breath. It broke my heart.

Libby told me that when he died I should feel free to spend some time with him before calling her. I cuddled him and cried. I called his family and they came we spent a few hours together until 4 am, toasting him with single malt whisky and sobbing together. I called Libby and the palliative care nurses in the morning but asked everyone to leave me alone with him until noon. I wanted to wash and dress him and I wanted to do this alone.

Libby came to the house. It was the first time we had met and she was wonderful. The first thing she said was how beautiful Morgan was and then she asked if she could touch him. I was so grateful for that.

She showed me how to set up the cooling blanket then she talked me through what to expect and watch for. She was honest and very frank which I appreciated. We talked about fluids and smell and flies and all those horrible things that could potentially occur but didn’t. Then she suggested I take some locks of his hair.

She offered to do all these things for or with me but was sensitive to the fact I wanted to do it myself. I knew I had made the right decision; had an undertaker come to take Morgan away from me at that moment I think I would have screamed. The pain of his loss was unbearable and I needed a little more time.

I decided that the first day would be for family only, the following for friends and family. I made and received various calls. I warned everyone “Morgan is still here, he looks peaceful”. I told them not to come for my sake but that if they wanted to come and say goodbye they would be most welcome.

I had warned his family that I intended to keep him at home. They were very supportive but understandably surprised. They all visited and sat with us, and I think they appreciated it. On the second day, his brother decided it was time for him to say goodbye. “I won’t be back tomorrow,” he said.

Friends were varied in their response. I found that women wanted to come, but men were less sure. Most people seemed glad for the opportunity to say goodbye. Some wanted a few minutes alone with him (this was hard for me but I did it). Some tried to ignore his presence and just talked to me. I continued to sleep on the sofa beside him.

On the third day, I realised I had to let him go. I had sat by his side for a month. I hadn’t stepped outside or seen the sun, I had barely eaten and barely slept. I needed to visit the cemetery, pick out a burial site and organise the funeral. I needed to leave the house but I couldn’t leave his side.

Now when I looked at Morgan I could see he wasn’t there anymore; whatever he had been had left. I called Libby. She came, I helped, and everything was done with the tenderest care. I had arranged a wedding photo, an autumn leaf and a teddy on his chest in his hands and she asked about them so she could recreate it perfectly in the sanctuary at Natural Grace. It was terribly hard but I was glad I felt able to trust Libby to look after him.

I went to the cemetery to pick a site with Morgan’s sister. We didn’t speak about it but we both picked exactly the same spot, under a beautiful Candlebark tree. We went back to Natural Grace and I checked on Morgan. He was there in the sanctuary, looking just as undisturbed and peaceful, the items arranged just so. Then we discussed the funeral and Libby was open to everything we wanted or suggested. I asked if we could bring him to the funeral ourselves in his 1974 Bedford van (the Beast); “A wonderful idea!” she giggled. She recommended a celebrant. We wanted mulled wine served – “No problem”. I wanted guests to be able to tie messages and flowers into the casket – “Easy”. We would like Morgan’s father to play his pipes – “Lovely”.

On 1st April 2016, we buried my beautiful husband. We met at Natural Grace and I spent the morning sitting with him, holding his hand. I had picked flowers to place in the coffin with him. His family and I placed him gently into his wicker basket coffin. We arranged flowers around him. We placed him in his van. We said goodbye.

We held the service at the cemetery with 300 mourners. Libby looked after me, making sure someone gave me food and drink, and guiding me through the funeral, sometimes physically. She did not rush me, even though the service went much longer than anyone anticipated. Afterwards, at the wake, there must have been 100 people who told me how beautiful it was, and how “Morgan” it was. No-one had been to a similar funeral and they were amazed.

The decision to care for my husband at home before, during and after his death was simple for me but would have been all the harder, perhaps impossible, without the kind, attentive, professional support of Libby, and the loving acceptance of my and Morgan’s family. They allowed me to make these decisions and held my hand throughout this most devastating time. For this, I am eternally grateful to them.

Complete Article HERE!

Posted on

Till the last good day: 3 pillars of palliative care

Every dying pet deserves a plan. Consider these inspiring case studies and tips that illustrate the power you have in veterinary medicine to help pets live longer—with a better quality of life—for days, week or months on their path to a peaceful death.

By Robin Downing, DVM

[S]oft, gray muzzles. Opaque eyes, still filled with the warmth that sparks memories of their spritely puppyhood (or kittenhood). Your sweet senior patients still have the hearts of the joyful youths who once bounded into the exam room with wet, sloppy kisses and bright eyes. But as their bodies have changed, their needs have too.

It’s true that pets are living longer—into their teens and even 20s—and better than ever, thanks to the efforts of our veterinary healthcare teams. And the evolving preventive-care practices that help them live longer mean these pets may face serious illnesses at the end of their lives: end-stage chronic kidney disease, chronic congestive heart failure and cancer—currently the leading cause of nonaccidental pet death.

Instead of the sudden hit-by-car deaths, we now see slow, steady declines into the end of life. This monumental change in pet life expectancy demands a change in how we manage aging patients. We must prepare for the patient’s end of life long before it arrives, thinking through how we will address the special needs of these special patients.

Fortunately, the recently crafted 2016 End-of-Life Care Guidelines from AAHA and the International Association for Animal Hospice and Palliative Care provide a roadmap for teams to follow.

Pillar No. 1: You’re caring for pets and people

End-of-life care constitutes a critical stage in a pet’s life, and the compassion and decision-making that happens is at least as important as the accumulated lifetime of care before. Our collaborative relationship with clients takes on a new dimension and urgency in the face of the pet’s changing medical needs as well as the pet owners’ anticipatory grief (read about that here) and other powerful emotions.

Pet palliative and end-of-life care focuses on alleviating patient discomfort and controlling clinical signs while addressing the client’s emotional, social and spiritual needs. When we care for these patients, our fundamental concerns are pain management, hygiene, nutrition, mobility and safety in the home. The next tier of care focuses on the pet’s mental state and engagement with human family members as well as interactions with other household pets. Finally, the veterinary team needs to help clients appreciate the pet’s will to live and to participate in its own care—for example, its willingness to take pain-relieving medications or to be handled for wound care.

Pillar No. 2: You’re helping craft end-of-life care plans

The success of a palliative-care plan hinges on the same principles as any other care plan. The difference: the palliative-care patient meets one or more of these criteria:

  • The pet has been diagnosed with a life-limiting disease
  • The client has declined curative treatment
  • Curative treatment has failed
  • The pet’s quality of life is harmed by clinical signs of chronic degenerative disease
  • The pet is experiencing progressive illness with complications.

These are pets with special needs, and their care plans will reflect elements not typically included in the care plans we create for other patients. An integrated approach to end-of-life care addresses the pet’s needs and the client’s needs, including financial realities. (Check out “Needs care, no $$” for more on talking through financial limitations.) This requires open communication to foster collaboration between your team and your clients. Any end-of-life care plan will fail miserably if the client is unable (or unwilling) to execute it. All care plans must also consider the pet’s willingness to participate in its own care. We can’t create a care plan that the pet resents enough that it damages the precious family-pet relationship.

The needs of pets reaching the end of their lives change over time, so keep an open mind about how a care plan will evolve. Only by scheduling regular patient reassessments and revising the care plan can we continue to provide the care pets need and deserve.

Pillar No. 3: You’re checking in on patients—even at home

In today’s world of high tech and social media, clients are comfortable operating in the virtual world. It’s now a practical option to remotely monitor dogs and cats approaching the end of their lives. While many canine patients enjoy car rides, as they age and become infirm, travel may become challenging for them. Entering and exiting the vehicle may become difficult enough that very large dogs may become impossible to transport. Small dogs who are losing their sight or hearing may feel disoriented if removed from their home environment. And cats are notorious for resenting car transport, unless they are conditioned to it early in their lives.

Rather than adding more fear, anxiety and stress to the lives of pets and pet owners, it makes sense to create strategies for remote monitoring.

One strategy is for a trusted veterinary team member to make regularly scheduled house calls to evaluate the pet in its natural environment. This person can be a veterinarian (if needed) or a well-trained and experienced veterinary nurse. These reassessments should include a hands-on pain assessment as well as a meaningful dialogue with the client about how the pet’s doing. A veterinary nurse could take advantage of video streaming to interact in real time with the appropriate individual back at the practice to modify feeding, pain medication dosing and other aspects of the care plan.

And remember, using video in real time can connect clients and pets directly to the practice. The pet owner can ask questions and answer important questions from the veterinarian. These FaceTime or Skype calls or Google Hangouts are an opportunity to review medications and feeding. Best of all, a veterinarian can see firsthand the pet’s environment and movement through regular activities.

Your veterinary team is poised to offer comfort and care as the days fade and pets reach the sunset of their lives. So make a plan to offer these pets and their parents comfort and support until their last good day—and beyond. To learn more about how your team can offer support through the hospice and euthanasia process, see the dvm360 Leadership challenge: Pet pain and death.

Complete Article HERE!

Posted on

A personal look at assisted dying

Well-known Salmon Arm resident uses new legislation to end life

Sally Scales, who ended her life under the new Medical Assistance in Dying (MAiD) law, holds a photo of herself as a nurse in earlier years.

By

“Hello. This is Sally Scales. S-c-a-l-e-s. I’m in Salmon Arm and I am preparing to die tomorrow,” said the message on the voice mail.

[T]he message was left overnight Monday, July 3 at the Salmon Arm Observer office.

Sally was one of the more than 400 British Columbians to use the Medical Assistance in Dying (MAiD) service since it became legal in Canada in June of 2016.

In her voice message, Sally said she was being blocked from using MAiD by her landlord because some tenants at Arbor Lodge seniors’ residence did not want it to happen there.

Her son Peter Scales telephoned the newspaper July 4 to explain his mother had been moved to Bastion Place care facility where the assisted dying would go ahead.

She died at 11:30 that morning, as scheduled.

Peter says his mother had been in favour of medical assistance in dying since 1993 when Canadian Sue Rodriguez, who was suffering from ALS – amyotrophic lateral sclerosis, or Lou Gehrig’s disease, took her legal battle for assisted suicide to the Supreme Court of Canada. Although she lost her case in a 5-4 decision, she took her own life in 1994 with the help of an anonymous physician.

Peter says his mom remembered when Rodriguez asked, ‘Whose body is this?’ “She said it’s my own body and I hope the law can change in time for me.”

He recalls that later Sally read an article by an oncologist who said he hoped to die at 75. As former owner of the Lakeshore News, Sally then wrote a column stating she’d like to die at 85. Peter says people around town, including some from her church, told her quietly of similar wishes.

“She knew she wasn’t alone in wanting to die at her own time and of her own choosing.”

Sally underwent open heart surgery 11 years ago, receiving a new valve and a quadruple bypass. At that time, “she said again and again that she was never going through that again.”

Peter said Sally watched both her brothers die and her mother die of heart attacks.

“She knew how the story was going to end.”

The new valve Sally got worked well for about 10 years, but then it wore out “through no fault of the medical profession.”

Although she was offered another valve, she refused.

“She was done. She was 79. She didn’t make it to her 85th.”

Her heart was operating at a maximum 20 per cent efficiency, so she was short of breath, ‘puffing’ and anxious a lot, Peter says.

“It would scare her as maybe this was the time she was going to die.”

As is required under the MAiD process, Sally filled out the application. She was assessed by a Salmon Arm doctor on June 23, says Peter. Then on June 28, a Revelstoke doctor assessed her in her room at Arbor Lodge. Later they agreed on a date of 11 a.m. July 4 to carry out MAiD in her room.

Peter says Sally was anxious about the paperwork.

“There was less than she probably imagined, but it’s certainly paperwork that needs to be done correctly. I think the whole MAiD community, the MAiD providers, are being appropriately extra careful. They don’t want to be seen as killing people, but rather ending suffering.”

Did Sally ever have second thoughts?

“No, that wasn’t her style. She didn’t have second thoughts about anything,” he smiles.

Peter says her family was supportive of her decision.

The only glitch was being informed on July 3 that she wouldn’t be permitted to die at Arbor Lodge, he says.

“She was so happy she could die in her home – which was Arbor – surrounded by her things.”

Peter sees the lodge’s decision as hurtful.

“It seemed like when we wanted to deal with just our mom and our grief, we had this needless logistical detail that seemed really cruel.”

A note to Sally from operations manager Christina Lutz stated, in part: “Respectfully, I do have to take into consideration the general feeling this sets about the house and the opinions of the other residents who live under this roof. Therefore, we will not allow this event to happen here and respectfully request that you find an alternate site.”

Peter says his family scrambled on a long weekend to change locations and Bastion Place was very helpful in accommodating them.

Lutz reiterated in a telephone interview that some residents didn’t like the plan.

“Sally was saying what was happening and the other people who lived here were not comfortable with it.”

Lutz said the lodge was happy to have Sally as a resident for nearly a year.

“She brought spice and laughter and good feelings to our home and we wish the family well.”

Sally’s three children – Peter, Richard and Linda, and three of her five grandchildren were present during her final hours.

He says a nurse and physician attended, the nurse inserting an intravenous (IV) line.

“She arrived and made sure that Sally was comfy and well-positioned on the bed. She stayed with Sally until the doctor was ready,” Peter says.

Peter and his niece then watched the doctor prepare the syringes, labelling them to have them in the right order.

When it was time to administer the drugs, Peter and his niece left the doctor and Sally alone in the room.

“My mom was an old nurse; she said only professionals…, the rest of you be somewhere else.”

He said Sally’s family was allowed to go in after 12 minutes.

Peter describes MAiD as compassionate and efficient.

“I am so glad it was available. I think we were all glad… We had watched mom suffer for far too long.”

He said Sally thanked all the staff, but also asked them their life stories.

“She was true to form, right to the last minute.”

Peter is a historian by occupation and one of his greatest personal interests is religion and beliefs.

“I think it’s a measure of a compassionate society,” he says of assisted dying. “It’s a tough moral quandary for each person and for society. Is it more compassionate to extend life or to end suffering? In Sally’s case she saw it as ending suffering, not ending life.”

Peter says he’s grateful his family could prepare for Sally’s death and spend time with her, knowing what was coming. On the practical side, he says it allows families to put papers in order, to learn important details such as where the will is located.

Interior Health provides statistics for B.C.

From the start of MAiD in June 2016 to May 31 this year, the BC Coroner’s Service has recorded 66 MAiD deaths in Interior Health and 435 in B.C. IH states it cannot provide numbers of individual communities because of small numbers and privacy concerns.

IH also states there is no designated location where MAiD can occur. To date in IH, it’s been provided in individual homes, in hospitals, in residential care facilities and in hospice locations.

“There may be times, given this is still a relatively new service in IH and in B.C., where there are challenges in accommodating MAiD in a specific location…,” wrote an IH spokesperson in an email. “In those cases, we would work with patients and families to find the best possible alternate location.”

Trailblazing was not new to Sally Scales. Peter recounts a favourite memory of his mom’s nursing career.

When she came to Salmon Arm from St. Paul’s Hospital in Vancouver, he says, she discovered that all the nurses were wearing skirts and starched caps, rather than the more practical pants the St. Paul’s nurses were wearing.

Peter says the administrator shouted at her. He referred to the nurses as “his girls” and said he liked them in the uniforms.

“That gave my mom her first crusade in Salmon Arm,” Peter says. “She hated being called a girl, especially by a hospital administrator. I think she might have taken it from a doctor.”

In speaking publicly about medically assisted dying, Peter hopes his mother’s story will help reduce the stigma about death and MAiD.

“They’re separate but interwoven. A lot of people have trouble talking, not necessarily about MAiD, but about death. It’s part of life and it’s inevitable.”

Complete Article HERE!