Tag: End of Life Care

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How would you like to die? It’s time to talk about it…

‘You get to die only once, and you have one chance to get it right’

By Alan Kirk

Discussing your end-of-life plans is about making your death less traumatic for your family and loved ones, and having your own wishes respected, as much as possible.
Discussing your end-of-life plans is about making your death less traumatic for your family and loved ones, and having your own wishes respected, as much as possible.

[H]ow would you like to die? Is this a question you ever ask yourself? More importantly, is it a question you ever answer? And, most importantly, is it an answer you share with your family?

For many it seems, the answer is no. Yet, when asked, it is something many of us would like to do. When the Irish Hospice Foundation (IHF) carried out research, they found 60 per cent of people thought there wasn’t enough discussion about death, yet 66 per cent have never discussed what they want around their end-of-life care with family.

“It’s a clear case of what people want versus what people do,” says Sharon Foley, chief executive of the IHF. “You get to die only once, and you have one chance to get it right. It’s so important to think about what you want for yourself at the end of life, now, while you still have capacity, to ensure the proper care and support for you, and less trauma for your family and loved ones.”

>When the doctor asked to talk to my dad and I, and we followed him into a side room, I knew it wasn’t good. All previous conversations had been in the ward corridor. This room had comfy chairs and a box of tissues. The room itself was the opening conversation about my mum’s death. He sat us down and explained that my mum’s stroke had been catastrophic causing significant brain damage, paralysis, double incontinence and that her chances of survival were not good. I had seen enough of my mum to know also that, if she did survive, her chances of living were not very good either.<

The doctor asked us what we wanted to do, if my mum needed to be resuscitated. Neither of us hesitated or even looked at each other to confer. We both said immediately, “Do not resuscitate.” We were lucky. We knew what my mum would have wanted. She had told us often enough. But I often wonder what would have happened if we had looked at each other first, and one of us defiantly had said yes.

But this is what often happens, as the decision over a parent or spouse’s death is left up to family members who are already in a deep place of distress. We know medical science is improving all the time and people are living longer, an obviously positive development. But it is also a challenge to respond to the care needs of an ageing population. While the medical profession has rightly focused on quantity of life, has society focused enough on the issue of quality of life? And, in particular, end of life?

According to Foley, no. “I liken it to the discussions in the 1980s around breast cancer. Women didn’t discuss it with friends. There were whispers about the ‘Big C’ and, as a result, women didn’t get screened, or get any support. Now screening and support are a part of life. We need the same sea change around our wishes regarding end of life.”

Critical conversation

For obvious reasons, thinking about our, or our parent’s death, is an upsetting notion, but, as Justin Moran of Age Action explains, it is critical to have that conversation while you still can. “We all think and prepare for what we leave behind in terms of our house and our legacy, but what about your own death? Thinking clearly about how you might want to be treated – or not – and ensuring decisions aren’t left to those you are leaving behind is about empowering people to make decisions for themselves while they can.”

The Irish Hospice Foundation encourages people to give guidance to family through a a campaign called Think Ahead and Have Your Say campaign, and this year legislation has come out introducing the opportunity for us all to leave a “living will”.

The Advanced Healthcare Decisions Bill gives people the chance to communicate their final healthcare requests when they might no longer be in a position to do so, and to provide healthcare professionals with important information about the patient’s treatment choices. You can also appoint a designated healthcare representative – a close friend or family member – to make healthcare decisions on your behalf if you no longer have the capacity to make those decisions.

A good death

“There is a lot of debate around what a ‘good death’ is,” says Foley. “This is about making death – something already heartbreaking and distressing for all – as respectful to the wishes of the patient as possible.”

Justin Moran acknowledges these are hard conversations to have with our parents or children. “It’s about ensuring that you retain as much control as you can over that part of your life.You don’t want to leave that responsibility to the people you love, who are already going through a tough time.”<

But is it enough? Back in that hospital room, we agreed to a DNR if my mum stopped breathing. But it was another five and a half years before she took her last breath. In the final months, in consultation with doctors, we took a further step to withdraw active life-prolonging treatment after she suffered a series of hospital-admitted infections which caused distress to everyone, especially her. We knew my mum’s wishes. But even at the end all we could do was withdraw treatment and wait and watch for the several weeks that nature took its course. She was never in pain. But she was distressed. She watched us, watching her die.

In many ways my mum had a “good death”. She died in my arms at home, with my dad and brother holding her hands. We had spent the previous two weeks constantly by her side, talking and touching, loving and laughing, holding her tight and letting her go. But, as her daughter, it was a terrible death.

Once we knew she was dying, once doctors confirmed she had passed the point of any recovery, there was nothing we could do but let her linger and languish as her body slowly shut down. She could easily have died when we had nipped to the loo, or gone to put the kettle on. The stress of that fear haunts me still. The conversation about dying has only just begun. But, for now, if we love the life we live, if we love the family we leave behind, if we want to be in control of our living, then as a society and individually, we need to talk more about dying.

Complete Article HERE!

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‘I regret not talking to my mother about her death, don’t do the same thing’

The Irish Hospice Foundation wants people to talk about death, dying and grief more openly.

By Órla Ryan

WE WERE AFRAID to say the word ‘death’, afraid that if we faced it she would die. We didn’t want to accept that she was going to die. The outcome of that was very difficult. We didn’t give her a chance to talk about dying.

Rebecca Lloyd’s mother, Christine, died 12 years ago. She was diagnosed with Motor Neurone Disease (MND) eight months previously.

MND is a progressive neurological condition that attacks nerves in the brain and spinal cord. This means messages gradually stop reaching a person’s muscles, which leads to weakness and wasting.

Rebecca notes that MND is often referred to as the “1,000 day disease” as most people diagnosed with it die within that number of days.

“She had much, much less time. It was horrible. She was such a huge part of lives,” Rebecca says of her mother, who was in her early 60s when she died.

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Christine

“It turned my life, our lives, upside down … MND is a debilitating disease. Diagnosis to death was less than eight months … It changed our lives dramatically.”

Rebecca told TheJournal.ie she was living in California with her husband and baby son when her mother was diagnosed with MND.

They moved back to Yorkshire in England, where Rebecca is from, and were there for the final few weeks of Christine’s life.

‘Grief is just so hard’ 

While she is grateful she was around to spend time with her mother, Rebecca deeply regrets that she and other family members didn’t talk to her about her death.

“We were afraid to say the word ‘death’, afraid that if we faced it she would die. We didn’t want to accept that she was going to die. The outcome of that was very difficult. We didn’t give her a chance to talk about dying.

Even as an adult grief is just so hard. What I’ve learned since then is that talking about it always makes it easier.

Rebecca praised her father Paul for the “magnificent” care he provided for Christine, enabling her to stay at home until the day before she died.

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Rebecca

Her mother’s death had a profound effect on her – in more ways than one. It led to her giving up her job as an engineer and she now works with the Compassionate Communities Project at the Milford Care Centre in Co Limerick.

“I made it my life’s goal to help people who are dying or bereaved.”

Rebecca says a large part of her job is “talking to people who are fit and healthy to get them to talk about planning for death”.

“We can make lots of decisions when we are calm and fine … We are not as good at making decisions when we’re in hospital and crisis has hit us.”

Death charter 

With this in mind, Rebecca helped devise the Irish Hospice Foundation’s (IHF) Charter on Dying, Death and Bereavement. The survey aims to gather the views of people in Ireland about death and grief before presenting them to the Government in a bid to help guide the national approach to services and supports for dying and bereaved people.

It has received about 600 responses in three weeks, and the goal is to reach at least 1,000. Rebecca says she has been “blown away” by the reaction.

“It’s notoriously difficult to get people to fill in surveys – you’re normally lucky if you get 20 or 30 people, especially dealing with something people don’t want to talk about. People obviously really do want to talk about it.”

Rebecca says people often avoid talking about death and dying because it’s an awkward topic and they might not know what to say.

She says some bereaved people have told her grief starts when the funeral ends.

We’re brilliant at funerals, the Irish are brilliant at funerals. After the month’s mind [mass] the support disappears. Especially for carers, they’re kind of just left.

Rebecca states that bereaved people often become socially isolated and sometimes people avoid bringing up their loss, noting: “We feel crippled with anxiety that we just don’t know what to say.”

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The goal of the charter is to place death and bereavement on the national agenda so people are more comfortable discussing it, and have access to services that will help when they’re in need.

Rebecca notes that Ireland has an ageing population and, according to a previous IHF survey, three quarters of people want to die at home.

“We want the Irish people to say what they want to see happen. The thing is we don’t know what they want.

“Are they afraid of pain? Are they afraid of what will happen to their family? Are they afraid of talking about death?”

‘Very lonely decisions’ 

IHF chief executive officer Sharon Foley said: “We are asking people to remember and reflect on their own experiences of dying, death and bereavement and re-imagine what it might take to facilitate a good death.

For all of us there will come a time when we will need care through illness and it’s important we understand how people look at death and dying to ensure correct supports are in place.

Campaign supporter Jillian van Turnhout, a former Senator, recently spoke about helping her father have his say at the end of his life.

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“Talk about end of life when you are healthy so you really know what your loved ones want.

“My father Michael wished to remain in Clonskeagh community nursing home instead of going to hospital when he was told he had 24 hours to live. Clonskeagh was his home at that point and it was where our family ensured he remained until he passed away a year after the decision.

Very lonely decisions have to be made at end of life and it’s important we feel no guilt in making these choices because we know it’s the wishes of our loved ones. My family and I made sure dad’s wishes were held to the end and that’s what keeps us strong now.

The IHF is currently holding death cafés, where people get together and talk about death and grief over a cup of tea and a bite to eat, in various locations around Ireland. The next one is due to take place on Monday at Dublin City Council Civic Offices on Wood Quay from 11am – 1pm.

“We need to be more honest, attend death café conversations and complete the Irish Hospice Foundation’s survey so we can make a path for the people we love and know what matters to the people of Ireland. Talk in advance and check in with each other, even if it’s only one dinner conversation,” van Turnhout advised.

Complete Article HERE!

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Aid in dying doesn’t increase death, it reduces suffering

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Colorado’s Proposition 106 would allow terminally ill patients to take life-ending, doctor-prescribed sleeping medication.
Colorado’s Proposition 106 would allow terminally ill patients to take life-ending, doctor-prescribed sleeping medication.

Re: “No on Proposition 106: Aid-in-dying measure lacks proper safeguards,” Oct. 11 endorsement.

I practiced family medicine in a small town in Oregon for 35 years, retiring in 2012. I cared for many terminally ill patients, and when Oregon’s Death With Dignity law passed some of my dying patients, albeit rarely, would ask me if I could help them achieve a death that they could control. My experience caring for thousands of patients over the years had taught me that death is not the enemy; suffering is the enemy. Their dignity and suffering were not defined by me, their doctor. I listened to my patients.

Colorado’s Proposition 106 is similar to Oregon’s law (in effect almost 20 years).

The concerns published in the Denver Post editorial have been examined and re-examined and have not occurred in Oregon, and will not occur in Colorado.

In Oregon there is no evidence of abuse of the law, no evidence of a slippery slope and no evidence of the “irreversible door” the Post editorial posits. More people do not die in Oregon, but fewer people suffer.

Aid in dying is patient-driven and patient-centered. “Professionalism” means putting the patient first. Medical aid in dying is not suicide, as your editorial inappropriately described it. Someone who commits suicide has, by definition, a mental illness and is “disconnected.” As a doctor, our job is to refer those patients to an appropriate mental health care provider, as we would for any patient with similar symptoms.

A person in the process of dying wants to live but will not. She or he is “connected”; to family, hospice and the medical system which includes doctors, nurses, family therapists, music therapists and others.

Medical aid in dying is a voluntary process. No one who does not agree with it needs to participate, and in fact it has enhanced end-of-life care, palliative care, and hospice care in Oregon, something that all Coloradans should support. I am proud that I live and practiced in Oregon, and that I was able to help my dying patients achieve a compassionate and desired end to their own stories. Proposition 106 should be approved by Colorado citizens.

David R. Grube, M.D., is national medical director for Compassion and Choices in Oregon.

Complete Article HERE!

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Aging animals get hospice care at Denver Zoo

by

Dolly, a 7,000-pound, 51 year-old, female Asian elephant smashed a 450-pound pumpkin at today’s 11:30 a.m. Toyota Elephant Passage demonstration. Today’s pachyderm pumpkin pulverization kicked off the first day of Denver Zoo’s two-weekend Boo At The Zoo celebration. The pumpkin was donated by giant pumpkin hobbyist Brian Deevy. It was filled with two of her favorite treats, romaine lettuce and “monkey chow,” which are biscuits for herbivores made of grasses, vitamins and grains, similar in look and texture to dog biscuits.
Denver Zoo’s beloved elephant Dolly

When you visit the zoo, you visit the animals and take pictures with them, but you never really think about what happens to them later in their lives.

Just like us, animals get older and have to be taken care of. There are several animals at the Denver Zoo that you don’t get to see when you visit because they are under special hospice care until they pass away.

The Denver Zoo has more than 4,200 animals. The majority of them live their entire lives there.

Each animal gets a monthly health screening. But as animals get older, the way zookeepers care for them changes.

“We’re really monitoring a lot of different things about their behavior, about their attitude, how well are they eating, what’s their activity level,” zoo spokesman Brian Aucone said.

Some animals are easy. Take Verde, a South American Quetzal bird. for example. The zoo retired her about 10 years ago when they thought she was getting too old. She has been living in one of the zoo staff offices ever since.

“She started having some health problems, losing her eyesight, but she is still a very healthy bird,” her keeper said.

Verde is now 31 years old and is thought to be the oldest Quetzal alive. Their average lifespan is about 20 to 25 years.

“She’s grandma,” her keeper joked. “We give her a very calm, relaxed life.”

Not every animal ages as gracefully as Verde though.

Rizzo, an 11-year-old pygmy marmoset, is about as old as her species can get.

“She’s super feisty. She’s a little old lady, but she has a lot of spunk,” associate veterinarian Betsy Stringer said.

Rizzo was showing signs of respiratory failure so she was admitted to the Denver Zoo animal hospital for treatment. She has spent many of her senior years in the hospital, hoping to fight Mother Nature with medicine.

There comes a time in every animal’s life, though, where medicine just isn’t an option.

“We love these animals from birth until death,” Stringer said. “And we care for them until their final days.”

That’s where Denver Zoo’s beloved elephant Dolly spent the end of her life. She was a patient in the zoo’s hospice care for weeks leading up to her death in September.

“I have to keep reminding myself that as I get older, they get older,” Dolly’s zookeeper Barb Junkermeier said in August. “I always want to keep them little and young, but OK, reality check. She’s getting older.”

Dolly died at the age of 52, which is about five years older than an elephant’s life expectancy. Dolly was the 10th-oldest elephant in North America.

Junkermeier worked with Dolly every day for almost 20 years. She said she could tell right away when Dolly needed end-of-life care. Dolly stopped eating normally and stopped socializing.

In hospice, the zookeepers give patients a lot more attention than the other animals. They get a lot more health screenings, medicine, supplements and treats. Zoo staff just does whatever they can to keep hospice animals as comfortable as possible.

“You just sit there and bawl for a couple days,” Junkermeier explained.

Zookeepers said taking care of a dying animal is the hardest part of the job. But they want visitors to know that they do it with passion, they do it with love, and they do it until the end.

“We are doing everything in our power to give them the best care. We never take anything lightly when it’s time to make that decision. It’s the hardest thing a zookeeper could ever do,” Junkermeier said.

As hard as it is, life is a circle. Right as one ends, another begins.

“When Whimsy was born we were all very excited to have this new gorilla in our group and she’s super fun to watch grow up,” Stringer said.

Whimsy is an 8-month-old gorilla. She is just one of several babies growing up at the zoo. One day they will have babies of their own, keeping the circle of life going forever.

According to Denver Zoo, about 30 percent of their animal population is considered geriatric.

Here are some of the oldest animals at Denver Zoo and the average life expectancy:

  • Natasha the snow leopard, 15 years, 4 months (14.3 years)
  • Rudy the eastern black rhinoceros, 23 years (18.3 years)
  • Groucho the Asian elephant, 45 years, 7 months (unknown)
  • Otto the North American river otter, 18 years, 3 months (11.9 years)
  • Hank the red-capped mangabey, 22 years, 10 months (17.8 years)
  • Tega the maned wolf, 13 years, 7 months (12.3 years)
  • Maude the harbor seal, 41 years, 2 months (24.1 years)
  • Robin the harbor seal, 37years, 6 months (24.1 years)
  • Dikembe the giraffe, 22 years, 7 months (13.5 years)
  • Kipele the giraffe, 23 years (19.5 years)
  • Cliff the Rocky Mountain big horn sheep, 14 years, 3 months (6.5 years)
  • Ridge the Dall’s sheep, 15 years, 2 months (unknown)

Complete Article HERE!

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This Man’s Letter To The Hospital That Cared For His Wife Is Going Viral

He wants to thank the staff for their compassion.

By Claire Hannum

laura-levis

Last month, Laura Levis died at just 34 years old after suffering a devastating asthma attack. Her husband, Boston-based writer Peter DeMarco, has been sharing tributes to Levis on Facebook since her passing. One such tribute was a thank-you note to the staff of CHA Cambridge Hospital in Boston, where Levis spent the final days of her life. The New York Times republished the letter, and it has since gone viral, touching the hearts of thousands of readers.

The letter opens with DeMarco noting that he still remembers the name of nearly every medical professional who cared for his wife in the hospital. “As I begin to tell my friends and family about the seven days you treated my wife, Laura Levis, in what turned out to be the last days of her young life, they stop me at about the 15th name that I recall,” he wrote. “The list includes the doctors, nurses, respiratory specialists, social workers, even cleaning staff members who cared for her. ‘How do you remember any of their names?’ they ask. ‘How could I not,’ I respond. Every single one of you treated Laura with such professionalism, and kindness, and dignity as she lay unconscious.”

DeMarco continued to describe the extraordinary compassion the staff exhibited towards him, his wife, and his family in what was possibly the hardest week of his life. He explained how the doctors and nurses made Levis’ father, a doctor himself, feel involved in the decisions surrounding her care. He expressed gratitude for the staff’s willingness to break hospital rules so that the couple’s cat could pay one last visit to Levis in her room. DeMarco also admired the staff’s thoughtfulness in keeping him company when he needed it most. DeMarco went on to expressparticular gratitude over a night when Levis’ family and friends stopped by to say their goodbyes:

“One special evening, you gave me full control to usher into the I.C.U. more than 50 people in Laura’s life, from friends to co-workers to college alums to family members. It was an outpouring of love that included guitar playing and opera singing and dancing and new revelations to me about just how deeply my wife touched people. It was the last great night of our marriage together, for both of us, and it wouldn’t have happened without your support.

In an especially powerful verse, DeMarco thanked two nurses for providing him with a special final hour alone with his wife. “There is another moment—actually, a single hour—that I will never forget,” he began, before explaining that on the final day of Levis’ life, DeMarco was hoping for some time alone with her. He asked Levis’ nurses, Donna and Jen, if they could help him set up a hospital recliner next to her bed. Instead, the two nurses shifted Laura further to one side of the bed so DeMarco could lay beside her, and gave the two an hour alone together.

“I nestled my body against hers,” DeMarco wrote. “She looked so beautiful, and I told her so, stroking her hair and face. Pulling her gown down slightly, I kissed her breasts, and laid my head on her chest, feeling it rise and fall with each breath, her heartbeat in my ear. It was our last tender moment as a husband and a wife, and it was more natural and pure and comforting than anything I’ve ever felt.” What a beautiful act of kindness by two incredible nurses. The entire essay, which can be read at The New York Times, is full of heartfelt compassion. Our thoughts are with DeMarco and with Levis’ family as they grieve her passing.

Complete Article HERE!

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Caring for the caregiver

By Mary K. Spengler

[C]aring for a loved one, whether a family member, friend or neighbor, is becoming increasingly common as the baby boomer generation continues to age.

According to AARP and the National Alliance for Caregiving, 40 million Americans provide care for an adult friend or family member who is ill. While the typical family caregiver is a 49-year-old woman, there is an increasing number of men serving in this role. In addition, about one-quarter of all caregivers are now between the ages of 18 and 34.caring-for-caregivers

The responsibilities of family members or friends that find themselves in this situation do not end with caregiving; many also hold full-time jobs. Caregiver obligations can place demands on their schedule and emotions, causing significant stress both in and outside of the workplace. For this reason, those in this position must be sure to take care of themselves in order to protect their own health and well-being in all aspects of their life. It is imperative that caregivers understand that taking care of themselves is just as important as caring for a loved one.

While there are myriad rewards for providing care for another person, there are also potential risks to the caregiver’s health. Signs of caregiver stress may build up slowly and might not be immediately noticeable. Coworkers, friends or loved ones may detect mood changes, impatience with colleagues and clients and a lack of joy in workplace and social activities. Anxiety, irritability and exhaustion also are common signs.

Stress can contribute to lost wages and ill health effects on the caregiver without the proper tools and exercises. Some simple steps can be taken to prevent or minimize the effects of stress. Seeking help is paramount. Very few people can handle the financial, physical, emotional and logistical burdens alone. Take turns with a family member. Pay attention to your own limitations and know when to ask others for assistance.

According to the Family Caregiving Alliance, it is not unusual for caregivers to develop mild or more serious depression as a result of the constant demands they face in providing care. Be sure to know what the signs of depression are — which include notable increase or decrease in appetite, fatigue, change in sleep patterns, and a loss of interest in people and/or activities that once brought you pleasure, among others — and ask for help through individual counseling or a community-based support group.

In order to avoid any misunderstandings with their loved one’s medical team, caregivers must take the time to communicate with them. Ask questions of the doctors, nurses and social workers and understand when and where the professionals must step in.

Personal time is absolutely essential for those managing a full-time job and caring for a loved one. They should be encouraged by those around them to explore options for using personal time for both caregiving and self-care. They may need reassurance that taking time off, even for half a day or just a few hours, will not adversely impact the company or their job.

Perhaps most importantly, caregivers should not forgo enjoyable activities. Spend time with friends. Gardening, reading, painting, exercise and meditation can help to alleviate the stresses of caregiving. It is imperative that they spend enough time on themselves while caring for a loved one.

Being a caregiver can be very rewarding, but it is also a balancing act. Caregivers must be aware of their own health and well-being as much as they are about that of their loved ones.

Complete Article HERE!

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Her life ‘at an end,’ ill Blaine woman turns to death midwife for help with last days

By Kie Relyea

Death midwife Ashley Benem, right, sits with Pam Munro at Munro’s home on Friday, July 8, 2016, in Blaine. Munro, who had Alzheimer’s, was in the process of voluntarily stopping eating and drinking with the guidance of Benem. Munro died July 17.
Death midwife Ashley Benem, right, sits with Pam Munro at Munro’s home on Friday, July 8, 2016, in Blaine. Munro, who had Alzheimer’s, was in the process of voluntarily stopping eating and drinking with the guidance of Benem. Munro died July 17.

[W]hen Pam Munro was ready, she gathered her family and friends at her bedside. There, with a tiara perched on her head, she held court in her home for an hour or two in the evenings while she still could. Together, they joked and laughed as she waited for the death she had planned.

The 62-year-old Blaine woman died July 17.

Twelve days earlier, she had stopped eating and drinking – choosing to accelerate her death instead of lingering into the later stages of her rapidly progressing Alzheimer’s.

Her father had dementia with Lewy bodies, her grandmother Alzheimer’s. She saw them deteriorate slowly until they were institutionalized. She didn’t want to end her days locked away in a care facility, a vegetable, not knowing her family and friends.

“My life really is at the end. After that, it’s not living. And there is no cure,” Pam said in an interview on her third day without food and drink, when she could still talk. “I want to die with dignity. I want to enjoy everything I can.”

Steve Munro, her husband of 15 years, looked on as she talked. Sitting near her was Bellingham resident Ashley Benem, a death midwife who helped the Munros navigate the end of Pam’s life. Benem is the founder of the nonprofit A Sacred Passing: Death Midwifery Services.

Pam already had decided to voluntarily stop eating and drinking, which is legal and also known as VSED, when the Munros met with Benem for the first time in January.

“It was pretty daunting. We didn’t know what to do, how to go about it. We needed advice,” Steve, 66, said Sept. 26. “It gave me comfort. Part of it was they knew what to do. I didn’t know what to do.”

Benem is among a growing number – exactly how many isn’t known because there is no regulatory agency – of people who help the dying and their loved ones in their walk with death. As a birth midwife ushers new life into the world, a death midwife helps ease people into death.

“They are the bookends of life. We start with an in breath and we end with an out breath,” said Henry Fersko-Weiss, author of “Caring for the Dying: the Doula Approach to a Meaningful Death,” which will be published in 2017.

Practitioners in the emerging field are known by a number of names, including death doulas, home funeral guides, transition coaches and end of life guides.

They offer a variety of services. Some are volunteers. Others, like Benem, are professionals and charge a fee.

What they share is a desire to comfort, to bring death back home into the family fold, and to once again make death a normal part of life instead of sequestering it away in hospitals and funeral homes.

A guide for the dying

Benem came to midwifery after years of medical experience as an EMT and paramedic. After the birth of her son, she became a licensed massage therapist and birth doula before becoming interested in serving as a death midwife.

Benem and her team at A Sacred Passing offer a number of services, all non-medical, that are tailored to individual needs.

They provide support and help people plan for the end of life. They work with funeral homes, hospice and others to augment existing care and services, they create vigils, they sit with the dying, they help with the practical, such as documents needed for end of life care, and they address spiritual needs.

“We go where the patient goes,” Benem said.“There’s not a single nurse or LPN (licensed practical nurse) that doesn’t want to sit at the bedside of someone that’s dying. They simply can’t because of staffing.”

She said death midwives can be advocates who help the dying and their loved ones navigate the big picture, who help them consider quality of life through the entire dying process.

“Our current models of care, though excellent at handling specific aspects of the end of life journey, leave people with huge gaps to try to navigate for themselves,” Benem said. “For example, you have an excellent physician to handle your medical care, but no one to handle the social, spiritual or economic questions or concerns.”

Such services are a convergence of two trends: People who want to die on their own terms, and the aging of baby boomers, a population juggernaut of about 75.4 million, who are driving the conversation much as they pushed for – and succeeded in getting – more personal, less institutionalized childbirth in their younger days.

We’ve lost touch with the deeper sense of what this journey is about and how to go through it.

Henry Fersko-Weiss, author of “Caring for the Dying: the Doula Approach to a Meaningful Death”

No one is tracking the number of people turning to such services but anecdotal information indicates an increase, including from people who are going to training offered by Benem.

“The sheer number of people calling, emailing with questions is on a steady rise,” Benem said. “Our classes are typically full four months in advance.”

Fersko-Weiss also reported seeing more people showing up for training and classes offered through the International End of Life Doula Association, which the former hospice social worker co-founded in 2014 to establish a standard of training and to certify death doulas.

Benem, who said she traveled and took a multitude of classes, gleaning what she needed to become a death midwife, also supported creating standards for licensing, and said she wants Washington state to certify death doulas and death midwives.

New name, old ways

The desire to bring death home is a desire to return to the old ways, those in the field said.

“We’ve lost touch with the deeper sense of what this journey is about and how to go through it,” Fersko-Weiss said.

Before the Civil War, family and friends prepared their dead for burial, according to “A Family Undertaking,” a 2004 documentary about the home-funeral movement in America.

Benem said her grandmother served as a midwife, a function common in many agricultural and rural communities in North America.

“They provided all the prenatal, birth and postpartum care for women in the town, village or community. They would fetch the doctor from the local city if there was a major situation, but most was done at home with the midwives,” she said.

“These are the same women who came to sit with the dying and tend to the very ill or injured. They were the ones who washed the bodies and prepped the body and home for receiving the wake and vigil keepers,” Benem added. “This is what she did. The training was all on the job. No formal schooling. She delivered babies and the dead. The work has not changed. Just the titles. It’s a new name for an old practice.”

“I’m at peace”

Back in the Munro household in Blaine, Benem sat near a tired Pam as she talked about her struggle with Alzheimer’s.

She would brush her teeth, forget that she had and wonder why her toothbrush was wet. She left groceries in the trunk of her car for days. She put muffins into the oven, forgot about them, and couldn’t figure out why the house was full of smoke.

Her balance was worsening rapidly. She kept falling. Benem, who had been monitoring Pam, set up a 24-hour schedule so she wasn’t left unattended and to provide some relief to Steve, who was struggling to care for her.

In the final days of her life, Pam talked about the lotion and oils her family would rub on her body after she died – giving them one last chance to touch her and be with her. She showed an ocean-themed shroud she would be wrapped in, one created for her by April Lynn, a death doula who works with Benem.

“I’m at peace. The closer it gets to my journey date, the more excited I am. I’m going my way,” Pam said.

She talked about the rocks gathered at seaside and placed downstairs in her home. She wanted loved ones to write a message or a prayer on a rock and then “huck” it – she was specific about the word – into a bay. The ritual would act as a continuation of her love for beaches and beachcombing, which included having her ashes spread at sea in the San Juan Islands.

“And when you huck it, please be sure to also huck any pain or sorrow you might be ready to release as well,” Pam said in a note. “I will be there with you. I will help you. I will always love you.”

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