Category: Philosophy of Dying

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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!

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The Professionals Who Want to Help You Plan Your Death

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[W]hen events involve a lot of moving pieces, it’s common to bring in a specialist. We have planners for weddings, parties, corporate retreats, and more — people who help us nail down our goals, explain complicated rules and contracts, and take care of the logistics so we can focus on the parts that matter most. When it comes to the most difficult event of all, though, many of us are on our own. Enter end-of-life specialists, who make it their job to guide dying people and their families through all the details they never wanted to think about.

Michelle Acciavatti, a former neuroscientist and ethics consultant, is the woman behind Ending Well, a Vermont-based business that helps people plan, prepare for, and experience “their own good death.” After working in hospitals and in hospice care, Acciavatti says, she began to notice repeated problems with end-of-life care: patients and family members not feeling listened to, people feeling too afraid or uncomfortable to broach the subject of death, outright denial about what was coming. Through Ending Well, she now offers services to help her clients come to terms with mortality, whether that means caring for a dying loved one, mourning a miscarriage or stillbirth, or planning their own advance care

“My work is to help people face and embrace the fear that keeps them from living well,” she says. “I educate people about their options at the end of life, but, hopefully, I also help them learn about themselves.” To do that, Acciavatti helps people articulate their priorities around death — do they want a home funeral? have any last requests? what do they want their legacy to be? — and then works to convert those desires into a concrete plan.

In part, that means handling all the logistics (for example, she has the legal and practical knowledge to hold a home funeral in any U.S. state), but Acciavatti says that “values-based care planning,” or helping people figure out their quality-of-life goals, is the element that she finds most meaningful.

“A big fear for many people doing advance-care planning is dementia,” Acciavatti explains, “and many people say they wouldn’t want to live if they couldn’t recognize their family members. In my process, we try and unpack that statement. What does ‘recognize’ mean? Remembering their names? Their relationship to you? Or recognizing them as people who love you even if you can’t place them?”

“Since you can’t possibly plan for every possible medical outcome and potential intervention,” she adds, “I find it’s much more useful to do the self-work to understand your values for living well and find where the line is in that way.” For example, a person might initially shy away from the idea of a breathing machine, but change their mind once they begin to consider when in their disease progression they may need one.

Once a person figures all that out, the next step is making their wishes known. Acciavatti urges her clients to have “an ongoing and evolving conversation … with your family, your doctor, with anyone who might be involved or have an opinion about your care, so that they understand why you have made the plans you have made.”

Amy Pickard, whose Los Angeles–based company Good to Go! helps guide groups and individuals through end-of-life paperwork, agrees. “Most people don’t even talk about those things, let alone put their wishes down in writing,” she says. “Imagine how traumatizing that would be if suddenly your loved one needed you to make life/death decisions for them and you never talked about it before.”

Pickard founded Good to Go! after losing her mother, an experience that left her unprepared to navigate what she calls “the death duties.” “I was stunned to learn of all the work involved after someone dies,” she says.
“When you’re grappling with an unbearable reality, which is when your fiercest cheerleader, best friend, and the one who loves you the most on the planet is dead, the last thing you want to do is spend every waking moment encountering nonstop questions about the deceased person’s life and estate.”

But how do you make a long conversation about death seem like a fun way to spend a weekend afternoon? The answer, Pickard decided, was to recontextualize advance planning as a party, complete with upbeat playlists, food, and plenty of humor. “I joke that Good to Go! is like when you give your dog a pill wrapped in cheese,” Pickard says. “The pill is confronting your mortality and G2G! is the cheese.”

“Basically, Amy saved me,” says Erika Thormahlen, a client of Pickard’s. When the two women met in Los Angeles years ago, “it was occurring to me how little I knew about my mom’s wishes for end-of-life stuff … We were a don’t-ask-don’t-tell family in a way, and my mother both always wanted to remain positive and also never wanted to be a burden.” Worried about potential awkwardness when she raised the subject, Thormahlen asked her mother if it would be okay if “my pal Amy came over and we filled out some questions together.”

When Thormahlen’s mother passed away a month after Pickard’s visit, “the dozen notes I made informed both my handling of her memorial and how I try to honor her life,” Thormahlen says. “I feel very privileged to have been there — and Amy made it this wonderful memory I often return to.”

The Good to Go! “departure file,” as Pickard calls it, includes a template for a living will (a document outlining a person’s desires for their end-of-life medical care) and a booklet covering almost everything the living will doesn’t: contact information for doctors and business associates; bills, social-media passwords; plans for children and pets; instructions for what should be done with photos, journals, and other personal belongings; and funeral and body disposition wishes, from where to distribute ashes after a cremation to whether an obituary is desired and what photo ought to be used.

“It’s basically every question that came up after my mom died,” Pickard says. “Since she died unexpectedly, I had to guess. I don’t want anyone else to have to guess.”

Clients of Pickard’s can go through the departure file on their own time or during one of her Good to Go! parties, which she throws monthly in L.A.; she hopes to take the event on the road this summer.

Over in Vermont, Acciavatti of Ending Well also says she hopes to expand her services down the line: “I want to offer everything!” she says.
“Anything someone tells me they need — if it resonates with me I want to do it. Reiki, therapeutic massage, music therapy, aromatherapy … Holding space for people to create their own rituals, tell their own stories.”

“If I’ve done my work well,” she adds, “people are dying in the manner they chose.”

Complete Article HERE!

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The long goodbye: Home burial can bring comfort

BY CATHERINE ASHE

[I] never had any reason to think I’d have to plan my own child’s funeral. And yet, last July, that’s exactly what my husband and I found ourselves doing. Our unborn son, James, had just been diagnosed with trisomy 18, a terrible chromosomal disease, at 32 weeks of gestation. We’d read the grim statistics for this disease, the second-most common trisomy after Down syndrome (trisomy 21), and we knew that his time with us was likely to be short.

This awful news forced us to confront impossible questions: How did we want his brief life to look? How did we want him cared for after death? Instead of buying diapers and looking at cute baby boy clothes at Target, I was looking at cemeteries and trying to decide between cremation and burial. At 32 weeks pregnant in the miserable summer heat, I was writing a eulogy for my unborn child.

Catherine Ashe and her son, James

During this time, I came across a beautiful article written by a grieving mother whose adult daughter had died at home in hospice care after battling cancer. The writer cared for her daughter’s body, held an extended at-home visitation, and then buried her daughter at home. The article moved me to tears, because it captured perfectly how I feel about death.

In a society where death is largely relegated to hospitals, impersonal mortuaries and mass cemeteries, home burial has fallen by the wayside. Yet just a generation or two ago, death was recognized as a natural part of life. The deceased’s remains were handled by the family, and burial was done at home, in a family plot. Visitations often lasted for days. There was time for loved ones to say goodbye in a peaceful, familiar and welcoming environment.

After reading that article, I started researching North Carolina’s funeral and burial laws, and what I found surprised me. Home burial is permitted, as long as the interment is on private land, and just about anyone can transport the body. At no point does a funeral home have to be involved. The only specific regulations involve burial of a body too close to a reservoir or other public water source.

When James was born, he surprised everyone with his strength. He had five wonderful months with us. During his 154 days on earth, he was always with either me or his father. We cared for him through the good times and the bad. He was a fat, contented baby with big blue eyes and crazy brown hair.

On Jan. 2, 2017, he slipped out of this world, cradled in our loving arms. At that point, he was a patient in Mission’s pediatric intensive care unit. After his death, we held him, his grandparents and uncles held him, and his care team said goodbye to him. And then we simply walked out of the hospital, carrying James in our arms. We had cared for him in life; now we would care for him in death.

On Jan. 3, we hosted an extended visitation at our house. This was made possible by a CuddleCot — a cooling device that will preserve a small body for quite some time. It’s a noninvasive alternative to embalming. During my research, I’d also learned that embalming a body isn’t necessary: Cooling serves the same purpose.

Thanks to the CuddleCot, we were able to have James at home with us so we could say goodbye. Prior to his birth, I’d read about other parents doing the same thing — and at the time, much as I’m ashamed to say it, I thought it was morbid. Why would you want your child’s body in the house with you?

It wasn’t till James died that I understood: James was still James. Nothing changed when he died. He was still my baby. It seemed only natural to bring him home to the place he’d known his whole life, to give us time to adjust to losing him, to give his sisters (ages 3 and 5) time to see him, say goodbye and understand that he was gone.

His visitation was lovely, as lovely as something so tragic can be. My husband and I were in our own home, so we were comfortable, able to retreat into our bedroom when we needed to, and there was no established time frame limiting visits. We spent two nights with him, saying goodbye, telling him all the things we wanted him to hear.

On Jan. 4 at 4:52 p.m. — the same time of day he was born — we buried James in our backyard with over 100 people in attendance. His presence there, in the yard where his sisters play, brings us comfort on some very dark days: Though his spirit is gone, his earthly remains are nearby. We visit him often, keep fresh flowers on his grave and have wind chimes in the maple that he’s buried beneath.

I hope that by writing this, I can help others realize that home burial is possible for their loved ones — all of them, not just children.

Complete Article HERE!

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California assisted suicide patients are mostly white, well-educated

Amanda Friedland, left, adjusts her friend Betsy Davis’ sash as Davis lies on a bed during her “Right To Die Party” surrounded by friends and family, in Ojai. At the end of the party, the 41-year-old woman diagnosed with ALS took a cocktail of lethal drugs and died, becoming one of the first California residents to take life-ending drugs under a new law that gave such an option to the terminally ill.

By Hattie Xu

[C]alifornia residents choosing legal assisted suicide are disproportionately white and well-educated, new figures show.

Since California’s End of Life Option Act went into effect on June 9, 2016, hundreds of terminally ill patients have weighed the decision to end their own lives.

In 2016, 111 individuals died from ingesting aid-in-dying drugs, according to the California Department of Public Health. Ninety more had been prescribed drugs but ultimately did not take them, while a total of 258 individuals had begun the end-of-life option process.

Over half of the participants had cancer, with the most common type being lung cancer. Participants also suffered from neuromuscular diseases, heart disease and non-cancer lung respiratory disease, among others. At least 84 percent were already enrolled in hospice or palliative care.

Of the 111 individuals, 87 percent were at least 60 years old and 44 percent relied solely on Medicare for health insurance. Participants were also overwhelmingly – 89 percent – white. Additionally, 58 percent had attained an associate degree or higher level of education. Highly educated whites tend to have higher household incomes.

While these proportions are similar to those in Oregon’s 2016 Death with Dignity Act report, they do not reflect the demographics of California’s population. This is a sign of a deeper sociological and anthropological cause, said Lael Duncan, medical director of consulting services for the Coalition of Compassionate Care of California, an advocacy group for quality end-of-life care.

“I suspect it has to do with cultural and community norms and higher acceptance of this practice among that demographic,” Duncan said, though she hopes future research will shed more light on the situation.

To be eligible for participation, patients must have a terminal diagnosis, defined in the bill as an “incurable and irreversible disease that has been medically confirmed and will, within reasonable medical judgment, result in death in six months,” according to the bill. They must be determined to be able to make their own medical decisions and self-administer the aid-in-dying drug.

Patients begin the process by orally requesting an aid-in-dying drug two times at least 15 days apart and submitting a written request to their doctors. After discussing alternative options for care with their attending physician, they must also consult another doctor who can confirm the terminal diagnosis and their medical decision-making capacity.

Drugs used to aid in dying have changed throughout the years as more states have authorized the procedure, Duncan said. Common prescriptions are for mixes of various drugs, such as narcotics, benzodiazepines and cardiac medications, that can be taken orally. The exact combination and dosages of these drugs are adjusted to the patient, as individual tolerances and metabolisms vary. This multi-drug regimen costs several hundred dollars depending on the drugs used. Medicare does not cover these costs, so many patients must pay out-of-pocket for the procedure.

After ingesting the drugs, patients enter a deep comatose state in roughly 15 minutes and die about 30 minutes to a few hours later, Duncan said.

Physicians are not mandated to participate in aid-in-dying, and facilities can also opt out of the practice. But a list of participating doctors does not currently exist, according to the Coalition of Compassionate Care of California’s website. Only a small proportion of all physicians in California are willing to prescribe aid-in-dying drugs, complicating patient access to the procedure, Duncan said.

“The first year, it’s been a bumpy road,” Duncan said. “Access has been incredibly challenging even for patients who are being cared for in organizations and institutions where they are participating.”

Complete Article HERE!

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The deaths that changed my life

A palliative care specialist reveals what she’s learnt

[W]ith two decades of experience in helping people approach their final days in the best way possible, Adrienne Betteley shares her most touching and disturbing moments

 
First as a nurse, and then working with Macmillan Cancer Support, I have spent nearly 20 years helping people during the final months of their lives – and making sure that as many as possible have a “good” death is a great privilege.

If my experience of end-of-life care has taught me anything, it’s that there is indeed such a thing as dying “well”. Of course, the way we die varies depending on the cause of death, as well as the individual needs of the person, but there is also a tragic variation in the care and choice that people have as they approach their end.

At Macmillan, we believe the first step in achieving a “good” death is talking about it more – as we set out in our recent report, No Regrets. We looked at the taboo around discussing death, and how planning ahead can help people to die in a place of their choice and to have more control over their treatment.

So, in the spirit of talking more, and being honest, I’m sharing some of my experiences. I hope that it inspires others to do the same.

Dennis’ late wife, with her son (Adrienne’s husband) and grandchildren.

Closure is important

The first time I encountered death was when I was seven years old and living in Australia in the 1970s. My best friend, Stephen, died of leukaemia at the age of 11. He was the son of some close friends of my parents and was like a big brother to me. He was so kind-hearted, and I really looked up to him.

Death wasn’t seen as something children should know about, so I never visited him at hospital or went to his funeral. No one talked about Stephen dying, and I had recurring nightmares about it. I feel that I never had closure, and still think about it now sometimes.

Adrienne Betteley

Don’t let fear stop you

When I was 25, and living in Cheshire, my maternal grandmother Eileen was diagnosed with oesophageal cancer. Her reaction to finding out she was dying was calm; she began talking about her memories and writing them down.

I was pregnant and my granny “held on” until my daughter, Jasmine, was born. I took my daughter to hospital to meet her great-grandmother, a few weeks before she was moved to a hospice.

The experience with Stephen had scarred me, and I didn’t visit her in the hospice. I was too afraid. I thought it would be like a Victorian sanatorium, with people wailing and crying out.

Years later, while I was a student nurse, I realised a hospice can be a place of joy and peace – somewhere to treasure the end of life, rather than focus on death.
I regretted that I had let fear stop me saying goodbye to someone I loved dearly.

Adrienne Betteley couldn’t face visiting her grandmother in a hospice

Trust a professional

My first career was in architectural stained glass, but I also had a part-time job at a nursing home. One of the nurses asked me to help her lay out a woman who had just died. I was very nervous, but it turned out to be an amazing experience.

I had never seen anyone treat another person with such gentleness and respect. As the nurse washed her and did her hair as though she were still alive, I was in awe. She made her look lovely, in her favourite clothes and make-up.

I understood the huge value that this nurse placed on another person’s life. It was this moment that helped me choose my own future in caring for people at the end of their lives.

Focus on pain relief

While waiting for my nursing training to start, I worked in a different nursing home, where I had an awful experience.

I was looking after an elderly woman who was dying of uterine cancer and had become bedbound. One day, the nursing sister on duty told me to get her out of bed to use the commode. I went to do as I was told, but as soon I touched the woman she dug her nails into me and screamed out in pain. I had never witnessed such agony.

Filled with rage, I went straight to the nurse and shouted at her that nobody in this day and age should be allowed to experience such pain. Why were we moving her when it was clear she needed to be catheterised?

She listened to me and sorted out a catheter and a syringe driver for the pain. But it made me determined that no one should have to experience pain like that.

Communication is key

My father-in-law Dennis had been employed on the Crewe railway works, and after years of exposure to asbestos he was diagnosed with terminal lung cancer.

It was the poor communication we encountered that was really upsetting. He was never told his prognosis by a medical professional; in fact a hospital doctor, knowing my nursing background, asked me to tell him instead. I couldn’t believe they would put that kind of pressure on me. But I went ahead and did it; I felt that at least I would do a better job than this doctor.

Adrienne Betteley’s late father-in-law, Dennis

As soon as I’d told my father-in-law, I felt like the grim reaper. The whole experience blurred the boundaries between my professional life and my private relationship with him – it was damaging and I felt a mixture of guilt and anger.

Dennis was encouraged to have palliative chemotherapy, without being warned of the side effects. Any extra time the chemo bought him was overshadowed by painful mouth ulcers, nausea and fatigue. The treatment destroyed any quality of life, and barely extended it: he died within six months.

If he had been given an informed choice about treatment, I’m sure things could have been different.

Say goodbye the right way

A few years ago, my mother died of oesophageal cancer, like her own mum. My dad and I were at her side, and I’d spent the last week in a camp bed next to her, mopping her forehead as we shared memories.

On the night she died, she put her arm around me and said: “Adrienne, I have to thank you for being the most wonderful daughter.” What a privilege to be able to use my knowledge and experience to support my mum and make her death easier.

Adrienne Betteley’s late mother

A Macmillan occupational therapist had transformed mum’s quality of life, making it possible to fulfil her wish of dying at home. As a nurse, I could advocate for her, and demand the right pain relief – but it really brought home how hard it would be for people without my professional background.

Knowing I’d done everything possible to fulfil her wishes made the grieving process easier, but I still had frustrations about what could have been better – especially the lack of support available at the very end. It sounds clichéd to say “dying is inevitable” or “death is the only certainty” – of course we all die, everyone knows that. But all too often, it feels like we are hiding from it. The fact that it will affect every one of us should galvanise us into action, so we demand a “good” death that is pain-free and meets our preferences about treatment and location – for ourselves and those we care about.

Complete Article HERE!

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Navigating the end of the road

Death doulas offer education, support to those seeking alternative options while dying or grieving

A screenshot of a video documenting a home funeral shows family members visiting their deceased loved on in a home setting. The video was produced by Lee Emmert and the University of Oregon’s School of Journalism and Communications Department.

By Courtney Vaughn

[W]hen both of her parents died six weeks apart, Nancy Ward had to confront death in a profound way.

She was lucky, sort of. Her parents had prearranged for their care after their deaths, but Ward recalls being uneasy with the post-mortem process when her father died of congestive heart failure.

“Up until this point, I had never seen a dead body because I was about as death-phobic as they come,” Ward says. “A man came into the room, he looked about 14, and unrolled a black plastic body bag on the gurney. I’m going, ‘Oh my God. This man was just living and breathing and now you’re gonna put him in a black plastic bag and do what?’ Put him out on the curb for waste management to pick up?”

Ward succinctly recalls the emotional sterility of the situation.

Nancy Ward

“This doesn’t feel right, this doesn’t feel good, it doesn’t feel loving, or respectful,” she thought to herself. “He doesn’t know my father. I know my father.”

Six weeks later, her mother died.

“I knew what was coming and didn’t like it, but I had nothing to replace it with,” Ward says.

Afterward, she became a death midwife, or “death doula” as some call it, availing herself to others so they didn’t have to go through the same process she did with her parents.

Ward is now used to confronting death. In fact, she and others have made a living out of it.

A few years ago, Ward and other colleagues in the death directives industry teamed up to form the End of Life Care Collaborative. Members help educate and guide people in their quest for home funerals and other self-directed death practices.

The group focuses on serving those who are dealing with the death of a loved one, or preparing for their own death.

Services range from home funeral preparation and arrangements, to help with navigating the traditional funeral process, to emotional and practical support for those delving into the end of their own lives, and a gamut of other services to serve those confronting death.

The ultimate goal, members say, is to help people achieve greater meaning, or a more comfortable process around dealing with death and accepting loss. To get there, clients must be willing to shake off some of the cultural stigma of death.

“As a society, we aren’t comfortable with dealing with death because it reminds us of our own mortality,” Ward says. “We think everybody should know what their options are and right now, they don’t. We’re trying to reach the people who want it done differently but don’t know what different looks like.”

Ward and the collaborative team help educate people on what their options are for preserving a loved one at home after they’ve died, or bringing the body of a loved one home if they choose.

Ward says most members of the collaborative try to operate on a sliding-scale fee system, to make sure no one is turned away because of finances.

“We all have different areas we like to focus on and that’s what makes the collaborative so important,” she says. “We can do everything from the totally esoteric to the toally practical.”

That means being a listener and helpful guide, or doing a load of laundry or providing a meal for a grieving household.

She points to a recent client she worked with- a woman dying of cancer- who wanted to be prepared when her final moments came, but more importantly, wanted to rely less on her family for her physical and emotional needs.

“She said, ‘my family is having a really hard time with this …I don’t want to burden them with my own questions and expressions, this is what I need you for,'” Ward recalls.

“Their psychological and emotional needs are unmet,” Ward says of many terminally ill patients. “My involvement is just simply working with the person on a psychological, spiritual, emotional level.”

Members of the collaborative are not isolated in their quest to provide resources and support for death directives, but their services aren’t widely available, or even widely culturally accepted.

Asher Wallis

“I have seen a good deal of anxiety arise from family members who are trying, in the midst of disorienting grief, to figure out what their loved ones, who had not planned logistically or financially for the events that would follow their death, would have wanted,'” Asher Wallis, an End of Life Care Collaborative member and grief counselor, explains.

He attributes some of the sources of that unnecessary stress to “culturally sanctioned misinformation about the physiological and psychological nature of dying such that both the family caregivers and the dying person think they are doing it wrong.”

Deborah Threadgill, a collaborative member who is also a certified funeral director, says the End of Life Care Collaborative focuses on making “everything family-directed,” meaning they never suggest or push services on clients. Rather, they try to educate them on their full range of options surrounding death and dying.

“We take something that is very, very traumatic in our society and taboo and make it something natural and beautiful,” she says.

Complete Article HERE!

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Poet ponders life on the brink of death

Nina Riggs pens rhapsodic memoir about living with terminal cancer

By Anjali Enjeti

That a writer with only months to live could carve out the time and energy to chronicle her experience of terminal cancer is an impressive feat. That a writer could accomplish this with such exuberant prose as Nina Riggs does in her debut memoir, “The Bright Hour: A Memoir of Living and Dying,” is revelatory. The book, birthed after Riggs’ 2016 essay, “A Couch is More Than a Couch,” which appeared in the New York Times column, Modern Love, captures vivid, dynamic moments, searing truths, bitter ironies and every delicate emotion in between.

Riggs’ great-great-great grandfather, Ralph Waldo Emerson, inspired the book’s title. “That is morning; to crease for a bright hour to be a prisoner of this, sickly body and to become as large as the World.” Riggs, who published a book of poetry in 2009 entitled “Lucky, Lucky,” was a great admirer of her literary ancestor. One particular phrase, “the universe is fluid and volatile,” in her favorite essay of his, “Circles,” helps her to wrap her mind around the parameters of her own mortality. “It allows for the idea that there are things that cannot be contained,” she writes.

Among her most referenced authors in “The Bright Hour,” though, is the 16th century French philosopher Michel de Montaigne, whose five out of six daughters, brother and best friend died prematurely. Montaigne ponders the weight of this kind of grief, and in him, Riggs finds a kind of kinship.

“I love about Montaigne that, despite roving bands of thieves and constant political upheaval, he reportedly never kept his castle guarded. He left all his doors unlocked. He acknowledged the terror that could come. But by considering it and allowing it in, he resolved to live with its presence.”

Riggs’ love of words was fervent, unbridled. She was a scrupulous linguist. The tones and the distinct sounds of syllables aroused in her a deep reflection.

“But the more I think about it, the more I’m struck by what a beautiful word it is – hospice,” she writes. “It is hushed, especially at the end. But it’s comfortable and competent sounding, too. A French word with Latin roots – very close to hospital but with so much more serenity due to those S sounds. (You see, I am growing increasingly fond of the letter S.)”

Her brief, melodic chapters, many only a page long, straddle the genres of prose and poetry, much like Emerson’s do.

Last year, Paul Kalanithi published “When Breath Becomes Air,” a memoir about living with terminal lung cancer. Kalanithi died at age 37, and like Riggs, lived for only approximately two years after his terminal diagnosis. Kalanithi’s book has been widely praised; Riggs herself deemed it “gorgeous.” “The Bright Hour” equals “Breath” in clarity, nuance and artistry. Like Kalanithi, Riggs makes acute examinations of the gradations of autonomy and agency while in treatment, and the ways in which relationships grow and reshape themselves in the face of a finite timeline.

Nina Riggs

“The Bright Hour” is also a precise study of how chronic and terminal illness affects members of the family. Early in the book, at a time when Riggs’ own cancer appears to be a relatively self-contained disease and her prognosis is good (“one small spot,” Riggs repeats like a comforting mantra), Riggs’ mother Jan is in treatment for terminal multiple myeloma. Riggs spends her time in between chemo infusions taking care of Jan. When Jan refuses further treatment, sorrow washes over Riggs. “See: She is dying,” she writes. “It is weird to write that – like I’m saying something bad about her behind her back. But it’s true. And no one knows it better than her. Eight years of cancer… My mom: my map, my Sistine Chapel, my ‘Lonely Planet,’ my beautiful ruin, my volcano.”

And it’s Riggs’ mother who, in many respects, models for her daughter the kind of perspective that Riggs later adapts when she learns that her own cancer is metastatic and incurable. “‘Dying isn’t the end of the world,’ my mother liked to joke after she was diagnosed as terminal…There are so many things that are worse than death: old grudges, a lack of self-awareness, severe constipation, no sense of humor, the grimace on your husband’s face as he empties your surgical drain into the measuring cup.”

Riggs was a wife and mother of two young sons, and as her illness progresses, she contemplates, keenly, the beauty and ferocity of the love she has for them. “When you fall in love with your kids, you fall in love forever. And that love forms the exact shape in the world of the cab of a beat-up pickup on the side of the dark highway – filled with safety and Stevie Wonder and okay-ness.” With her dear friend who is also parenting young children while living with terminal cancer, she exchanges hilarious texts about how they might monitor their children from the grave, as if “dying makes us more powerful parents than the living version of ourselves.”

Ultimately, this is Riggs’ magic. She has produced a work about dying that evokes whimsy and joy, one that sublimely affirms that the inevitability of death carries with it its own kind of light and grace. “We are breathless but we love the days,” she writes. “They are promises.”

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