Category: Talking about death

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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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As family members dominate caregiving, outside support is hard to find

By Steven Ross Johnson

[N]early 9 out of 10 caregivers for older Americans are unpaid, and those individuals work longer hours and receive less government support than their paid counterparts, according to a new study.

Approximately 900,000 Medicare beneficiaries received support from 2.3 million caregivers in 2011, according to the study published Wednesday in Health Affairs. The study looked at data from Medicare beneficiaries who lived in community settings and died within one year of study enrollment.

That’s just the tip of the iceberg. In 2015, roughly 34 million Americans provided unpaid care to an adults age 50 or older in the last 12 months, according to figures from the National Alliance for Caregiving and AARP.

Unpaid end-of-life caregivers provide nearly double the hours of support per week compared to other caregivers, but they did not receive additional pay from government or private insurance, according to the Health Affairs study.

The study illustrated the heavy economic burden family caregivers can face when they provide end-of-life support and how the healthcare system relies on family members to take on that care, according to Katherine Ornstein, assistant professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York City and lead author of the study.

“We need to do more to make sure that our infrastructure is supporting (family caregiving) so that it can be done well and that the consequences for family members are not negative,” Ornstein said.

Medicare spending in 2011 on patients during their last six months of life accounted for 28% of the total $554 billion the program spent on healthcare that year, according to the Kaiser Family Foundation.

The value of unpaid care provided by friends or family members was valued at roughly $470 billion in 2013, according to the National Alliance for Caregiving and AARP.

Government and healthcare stakeholders can provide family caregivers with information and resources to help set and reschedule physician appointments, work with insurers or make care decisions to ease their burdens, Ornstein said.

Those resources could go a long way with spouse caregivers in particular. More than 42% of Medicare beneficiaries in the study received help from their spouses, according to Ornstein’s analysis. But nearly two-thirds of spouse caregivers reported that they received no support from family or friends.

Still, approximately half of Medicare beneficiaries received support from their daughters and one-third received help from their sons.

By comparison, 14% of study participants received caregiving support that wasn’t for end-of-life care from paid helpers and 20% secured paid help for end-of-life care, the study found.

Family dependence for end-of-life or aging care is only expected to rise as the elderly population will nearly double from 2012 to 2050, increasing to more than 83 million, according to the U.S. Census Bureau.

But family members and loved ones may not be able to meet those increasing care demands. A 2013 report by the AARP Public Policy Institute found that there were an average of about seven potential caregivers for every patient age 80 and older in 2010, but that ratio was expected to decrease to 4 to 1 by 2030 and to 3 to 1 by 2050.

Complete Article HERE!

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Homeless and Dying in America

Facing the End of Life Alone

By Betty R. Ferrell, PhD, RN

As Homeless Persons Near the End of Life

[S]tatistics about the US homeless population are staggering. More than a million people face homelessness each year in the United States, and these individuals often have multiple complex illnesses and comorbid mental health conditions. Orchestrating care for the homeless population poses significant challenges.

Little is known about the end-of-life (EOL) experiences of homeless persons. A major gap in knowledge exists regarding the symptoms experienced by homeless persons at or near the EOL—information that would help clinicians not only manage these symptoms but also assist homeless persons with advance care planning and decision-making around death and dying.

To characterize these symptoms, Tobey and colleagues[1] surveyed homeless persons at a medical respite program who were approaching the EOL. The demographic data derived from this study speak to the distinct palliative care needs of the homeless. Sociodemographic data from this study, showing that 60% had substance use disorders and 85% abused alcohol, will greatly affect the provision of care for this population. All homeless patients interviewed reported experiencing pain, and psychosocial needs were equally significant. Nearly all (95%) of the sample had experienced the death of a loved one, 25% worried daily about their own mortality, and 75% worried that no one would even know that they had died.

Viewpoint

The palliative care needs of various subgroups of people with serious illnesses are well documented in the literature, providing data about the unique physical and psychosocial needs of patients across many diagnoses and clinical settings.[2,3,4] The study by Tobey and colleagues adds to the body of literature by describing the distinct needs of the homeless population. The findings of this study provide insight for clinicians and for health policy administrators to attempt to meet the challenging needs of the homeless.

The study’s design was commendable. Direct interviews with homeless persons helped to understand their unique needs during their last months of life. The use of a medical respite center serving the homeless provided an ideal environment for the study.

Although the study sample size was small, the findings are rich in meaning and have implications far beyond the medical respite unit where the study was conducted. These findings will also apply to the many diverse settings where homeless persons seek care: public hospitals, emergency departments or urgent care centers, Veterans Affairs hospitals, and other settings.[5,6] Continued research and clinical advances in the care of the homeless are obligations of palliative care, a field committed to comfort and respect for all patients.

Complete Article HERE!

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People are choosing to die in their beds over a hospital

By David K. Li

[M]ore New Yorkers are choosing to spend the last moments of their life in the comfort of their own home — rather than a hospital bed.

The percentage of terminally ill Big Apple residents who pass away at home has been on the increase for the past eight years.

“It’s become understood it’s more comfortable to die at home,” said Arthur Caplan, director of medical ethics at NYU Langone Medical Center.

“It’s become acceptable to think and plan about dying at home.”

Back in 2007, just 18.9 percent of deceased New Yorkers passed away at in their own home, according to figures compiled by the city’s Department of Health & Mental Hygiene.

That figure has been climbing every year — reaching 23.4 percent in 2015, according to the most recent data available.

“I do think it’s a trend,” said Dr. Susan Cohen, section chief of palliative care at the NYU School of Medicine. “If we’re having the conversations that will offer [home death] as an option, they will take it.”

City hospitals still remains the most preferred the place to pass. But hospital deaths have been sliding down for years — from 51.4 percent in 2011 to 46.4 percent in 2015.

While city data doesn’t specify what ailment ultimately leads to home death, palliative care researchers and medical ethicists said that dying patients are choosing comfort over more medical treatment.

In addition, data on deaths at licensed hospices in the city has risen to 5 percent from just 1.8 percent in 2011.

It’s not clear to medical professional what might have changed patients minds about where they choose to live out their last days.

Cohen – who is also director of the Palliative Care Program at Bellevue Hospital – cited the American Board of Medical Specialties’ move in 2006 to formally recognize palliative care as an official specialty.

That recognition could have eased the concerns of patients and their families about the process.

Caplan traced roots of this die-at-home trend back to the 1980s and early 1990s when AIDS ravaged America’s gay community.

“HIV led to people re-think how to care for the dying. For a gay man (in that era) being in hospital was not a comfortable place to be,” Caplan said. “There was a stigma [in a hospital] but [at home] you could be surrounded by your loved ones and friends.”

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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On dealing with grief

Methods for coping with the noise

By Douglas Redd

[W]hen you are grieving, it may seem instinctual to build a wall around yourself. Or you might want to bottle your emotions and disguise what you really feel. It is important, however, to realize that there are other ways to heal that keep you and your relationships healthy. The American Psychological Association recommends several methods for dealing with loss including acceptance, self-care, and support system building.

Loss, failure, or separation can cause pain that may never go away and, in my experience, this pain comes in waves. At times, I would convince myself that I was OK, but something small, like a song or smell, would consume the peace of mind I thought I had. At times, the grief may not seem all that bad while at other times the anger, sadness, or denial may swallow you whole.

It is human to feel this pain, and it is human to let yourself express the heartache that comes with loss.

It is crucial to remember that it’s OK to hurt. The first step to moving on is allowing yourself to be sad. Denial will only prolong the pain you’re feeling. During the initial stages of grief, surround yourself with others. Do not allow the pain to make you forget about the people that you still have. Your friends and family understand what you are going through, and shutting them out will only further your misery.

While you may not want to open up about what you are experiencing inside, realize that talking about what you are feeling will make it better. Talking is believed to reduce stress, and during times of grief, it could be useful to help create a support network. Loved ones want to support you during times of grief, so let yourself lean into that support rather than resisting it. You have people to talk to, so use them to ease your pain. Talking will let you realize that you cannot and should not depend solely on yourself, and it could allow others to find different ways to help you heal.

Grief won’t only affect you mentally, but it will also seep into your daily life and could begin to affect your lifestyle, routine, and health habits. To cope with loss, it is important to maintain your health and wellness.

To make this easier, it may be useful to understand the five stages of grief.

The five stages of grief are denial and isolation, anger, bargaining, depression, and acceptance. Those who are grieving experience these stages differently; they might experience all of these stages in this order, skip some of them, or they may appear in a completely different order. While everyone may find that some coping mechanisms are better than others, there are a few health-related tips to make the process easier.

Firstly, make sure that you are able to get an ample amount of sleep. The process of grieving may tire the body, and a lack of sleep could cause you to feel worse.

To properly nourish your body, do not forget to maintain healthy eating habits. This also applies to the use of substances to alleviate the pain. While alcohol and other drugs may seem like they numb the pain, they ultimately will only bring more trouble.

Taking care of yourself is an essential part of living well, especially in times of struggle. When grief has the potential to not only affect your mental health, but your physical health too, you need to take additional measures to ensure your well-being. These measures also include returning to things that made you happy before.

Do not forget about the little things in life that you previously enjoyed. I am not telling you to distract yourself from the pain that accompanies grief, but to indulge in the activities that made life worthwhile to begin with. It is not over yet — enjoy what there is left to love.

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!