Tag: Conscious Living

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A Dress Rehearsal for Death

We had started down the path of honoring our mother’s wish to have a good death until a hospice nurse figured out that she wasn’t really dying.

Monona Yin, right, with her mother, Fay Hoh Yin, and brother, Duncan Yin.

By Monona A. Yin

Three years ago, my family and I had the experience of going through a full “dress rehearsal” for my mother’s demise. At 83, she had become alarmingly weak from stage IV lymphoma and atrial fibrillation, and asked me and my brother to come home to Delaware for her next oncologist visit.

Mom had already undergone chemotherapy and cardioversion, so we knew there were few treatment options left. Still, we were utterly unprepared when the doctor said, “She probably has less than six months,” and recommended that she begin hospice care.

Widowed at just 37 with two small children, Mom has trained herself to face challenges without flinching. She is that rare Chinese elder who isn’t superstitious about mentioning or planning for her own death.

True to form, when we got home from the oncologist’s office, Mom sat us both down at the kitchen table to discuss her end-of-life wishes. She had witnessed two horrible lingering deaths up close — her mother’s and a longtime friend’s. What she feared most was pointless suffering and the loss of control over her own life. She wanted us to understand that, if she had little hope of recovery, she’d rather go quickly than fall apart slowly and painfully.

My brother, at the other extreme, wanted Mom to pursue every medical option, no matter how long the odds. He believed that doctors were fallible, there was always another treatment out there, and life was worth clinging to. And he couldn’t bear the thought of living without her.

Then there was me, torn between them. I had spent hours listening to Mom’s fears and understood them. A decade earlier, my mother-in-law had died with a feeding tube in her side while her oncologist suggested more surgery — after six months of wasting away from metastatic cancer. It would have been infinitely kinder to allow her to die peacefully in her own bed.

We had given my paternal grandmother just such a “good death.” We sat by her bed and told family stories as she slipped into unconsciousness. We turned away from the outside world and drew close to one another. All was quiet and time seemed to stop. Finally, we held her as she took her last breaths, letting her know how much we loved her but also letting her go. I remember that week as a thing of rare beauty. It taught me that dying well can be a balm and a blessing to all involved.

Recognizing the enormous gulf between those two scenarios, I supported Mom’s right to die on her own terms. Like my brother, I desperately wanted more time with my mother. Despite her failing body, Mom’s mind remained sharp. In recent years, our occasional mother-daughter tensions had subsided, leaving a much warmer and less complicated companionship.

After an emotional week of debate, we all agreed to bring Mom to New York for a second — and final — opinion from the world-class doctors at Memorial Sloan Kettering. If they too determined that nothing more could be done, we would accept the inevitable.

At Sloan Kettering, Mom went through the scans without incident but afterward her blood pressure dropped dangerously low and she was admitted as an inpatient.

By the next night, Mom could hardly breathe at all. It was agonizing to watch her gasping for air. She was terrified of suffocating and on the verge of panic. Finally, she pulled me close to say, “Tell them to stop everything.”

I had promised to honor her wishes, so I found a doctor and activated her D.N.R. In a few minutes, my husband, Steve, and our 14-year-old daughter, Maya, arrived and Mom couldn’t hold back her sobs. “I’m so sorry I won’t see you grow up! I’m sorry I won’t see you graduate or get married!”

We had all been coming to terms with Mom’s mortality for months but the shock and pain were still overwhelming.

Then something that seemed miraculous happened. A hospice nurse, Tracy Kahn, arrived and went in to check on Mom. She came back to tell us that she didn’t think Mom was going to die that night, the next night, or maybe for weeks.

Based on years of observing hospice patients, Tracy did not believe Mom was dying of cancer right then.

Instead, without our realizing it, her heart had been severely weakened by the cardioversion, which required high doses of a toxic drug. Almost two liters of fluid had accumulated in the lining of her right lung.

We immediately reversed the D.N.R. but it would be another 10 days before Mom grew strong enough to have the fluid drained. Over the next month, the hospital’s lymphoma, cardiology and pulmonary teams worked together to bring Mom back from the brink. They administered steroids, gave her blood transfusions, stabilized her immune system, optimized her diuretic and treated her infections.

Mom transferred to a rehabilitation center for another month, then came to live with me in Brooklyn. With our newfound sense of “now or never,” Mom and I fulfilled one of her longtime dreams. We edited and self-published her memoirs, which she’d been writing for years, and she’s enjoyed positive reviews from friends and strangers alike.

Today, Mom still wrestles with neuropathy, shortness of breath, and sometimes crushing fatigue — but she is very much alive. Even more amazing, she has been living on her own for the past two years.

We’ve had time to reflect upon our decisions, how we influenced one another, and what we’d do differently. My central insight is that it took all three of us to steer clear of the twin shoals of dying too soon and dying too late. We made better decisions because we listened to one another and weighed all the conflicting information. In hindsight, my mother acknowledges that she wanted to “pull the plug” too soon because she became overwhelmed by fear.

No one thinks clearly in the grip of panic. That’s why it’s so important to start talking long before the end. Not merely about what constitutes a good death but, more important, what makes even a diminished life worth living. As Atul Gawande writes in “Being Mortal,” “Our ultimate goal, after all, is not a good death but a good life to the very end.”

The end-of-life conversation is equally important to both sides — the dying person and the survivors. One of my mother’s greatest comforts is knowing that her children understand her wishes and will honor them. We proved that during the dress rehearsal.

Only recently have Mom and I realized how much it cost me to be her health care proxy, rather than a grieving daughter who wanted to do anything to save her mother. I’m still going to be torn between those two roles “the next time” but simply being aware of that inner conflict helps mitigate it. And Mom’s future decisions will be informed by all the joy she would have missed had she died that night in late 2015.

Complete Article ↪HERE↩!

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‘Remember you will die’ – and 11 other tips for a better death

Hundreds of thousands of people have already discussed the last great taboo at one of Michael Hebb’s ‘death dinners’. Here he offers some advice for the rest of us

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Two things preoccupy the US writer Michael Hebb – food and death – and he has managed to combine them in his new book, Let’s Talk About Death Over Dinner. It is the product of an idea he had five years ago when he set up an organisation called Death Over Dinner, whose goal was to bring disparate (and sometimes desperate) people together over an informal meal to talk about what is so often a taboo subject. Since then there have been more than 200,000 “death dinners” all over the world. The new book charts the gentle revolution Hebb initiated, as well as offering prompts for readers who want to organise their own death dinners and guidance on coming to terms with the loss of family and friends, and with our own mortality. No one, after all, is going to get out of this alive.

“The way we die in western society is broken,” says Hebb. Now 42, he was 13 when his father died, leaving a gap that he felt his mother and immediate family were unable to properly address. “I had a hunch that open conversation about our end-of-life wishes could be the most impactful thing we could do to heal that system and to heal the way we die. We are death-illiterate, and when we don’t discuss death we are not empowered to make decisions.” In a long phone conversation from his home in Seattle, he spells out his philosophy for dealing with dying. You may not be able to conquer death, but you can at least exercise some control over how it happens.

1. Remember you will die

Hebb says we have “ingrained cognitive bias” not to talk about death because we don’t really believe in our own mortality. “We believe we are an exception to basic rules,” he says. “If we haven’t experienced something, it’s hard to know it or to discuss it.” But there are no exceptions, and sooner or later you will have to confront it.

2. Talk now, not later

“Death is a reality for all of us,” Hebb says. “How prepared do we want to be? How comfortable? How much grace do we want to have in the face of it?” He argues that it is better to talk about death when you are well than when you or your parents or other members of your family are terminally ill. “Thinking and talking about death can identify how you want to live,” he says. “If we haven’t made ourselves comfortable with this conversation, we end up being oppressed by it.”

3. It’s not true that you die alone

Before talking to Hebb, I was doubtful that the living could relate meaningfully to the dying. My father died last year and, in the five months that were left to him after he was diagnosed with terminal cancer, I found it hard to find the right words to address what was happening to him or to know how to use what limited time we had together. Everyone, I surmised, had to face death alone, to make their own peace, but Hebb disagrees. “Dying is a realm with no experts, but my sense is that you can reduce the suffering of those who are dying by being as present as possible to them. A lot of people already start dying when they’re diagnosed, but you can live while dying. There is much to be gained from being present until the final chapter. It has the potential for deep connection. I’m not going to gleefully state that dying is a happy time, but I do know that people grieve longer when they don’t know how to honour the person who has died.”

4. Where there’s a will there’s a way

“Statistics show we are very unprepared for death,” says Hebb. “Most people don’t have their end-of-life documents in order.” Sixty per cent of adults in the UK have not made a will; in the US, that figure is 57%. For Hebb, this isn’t just foolish at a practical level; it suggests an unwillingness to talk about death at all. “The documents are important, but more important are the nuanced conversations. If somebody is going to be your health proxy or advocate for you when you are unwell, you want them to have more than just a signed legal document. You want that person to have an entire forest of information about how you feel about end of life.” He says that if you give someone power of attorney to conduct your affairs in the event of you becoming incapacitated, you need to make sure that person really understands you. Spell out exactly what you want in terms of end-of-life care, perhaps through an advance care directive or a living will; do not assume your proxies will make the right calls.

5. Decide what sort of funeral you want

Specifying what you want in terms of your funeral and disposal of your body can be important to the dying. But it may be even more important to the grieving family. “If it makes somebody’s last years more peaceful knowing that their wishes will be fulfilled, then fantastic, but communication is really a gift to the people you leave behind. It’s an important element of the moving through and getting on with their lives.” Making it clear that you do not want a gun carriage pulled by six white horses, or choosing a cardboard coffin rather than a fancy mahogany one with brass handles, can also save a fortune and keep relatives out of the clutches of funeral directors who may be tempted to oversell. How much is spent on a funeral is not a measure of the love felt for the departed.

6. Think about your legacy

Fretting about your legacy seems to me a pointless act of ego, but Hebb disagrees. “Many people do work in this world that they want to extend beyond their death. Some of that can be seen as ego, but some of it is humanitarian in nature, and I think it’s OK to want to have a continuing impact. If that’s what gives your life meaning, I’d say embrace it.” Above all, though, he says, don’t make your legacy suffering and confusion. “You will have a legacy. Everybody has a legacy. So often in families when these things aren’t discussed, there is infighting. For me, it’s not enough to say child A, B and C gets X, Y and Z; if they can have some understanding around your decisions, it’s less likely to haunt them.”

7. Be ready to talk to children about death …

You should involve children in your conversations about death, with one proviso – that you go at the pace they set. “My older daughter is interested in the topic,” Hebb says, “but my younger daughter has zero interest and I feel bad for her that her father is the death guy, so I don’t force it on her. But if a child is interested in, curious about, scared of or ruminating on death, it is of great benefit to meet them in their curiosity or concern or fear. It’s also a great way to know your child better.”

8. … And be there for bereaved parents

“We are often afraid to bring up death in the presence of parents who have lost children,” says Hebb. “It’s an unimaginable amount of grief for lots of us. But if we want to stay connected to those people, it’s imperative we engage with them because it is certainly in their thoughts and dreams all the time.” He says many people also lose friends when they lose children because those friends are too frightened to discuss the subject and the relationship breaks down.

9. God makes little difference

You would think belief in an afterlife would make the pain of dying less, but Hebb is sceptical. “Faith plays a role, but it isn’t as central as you would think. Grief will exist regardless of whether or not people have faith. If that’s an excuse not to have the conversation, you’re not doing yourself any favours.”

10. Accept that caring for the dying is hard

People who are dying fret about being a burden on their friends and family, while carers feel they have to be perfect and never show frustration or exhaustion. Hebb says both should be honest about any resentment they feel. “Care-givers should feel they have permission to have all these conflicting emotions,” he says. “If the person thinks they are the only one who feels this way, that’s much more traumatic than realising that it’s OK to resent the person you’re taking care of. ”

11. Death is not a medical act

Like others who have written about death, notably Atul Gawande in his book Being Mortal, Hebb emphasises that death is a human and community event, not a medical event. “Medicine is what keeps you alive and that’s what doctors are focused on,” Hebb says. “We have to reclaim the death part. Don’t leave it in the hands of tacticians.” He praises a project at the Cleveland Clinic called “The Pause” where the medical team gather round the bedside of a person who has just died to have a moment of silence and then share their recollections of the patient. It is not merely a medical failure to be recorded and a body to be disposed of; it is a life and a person to be honoured.

12. There are no rules for grieving

Finally, Hebb says, it is impossible to systematise grief. “Every case, every person, every situation is different. We should give ourselves permission to grieve in precisely the way we need to.” If you beat yourself up for the way you are grieving, you will only lengthen and deepen your grief.

Complete Article ↪HERE↩!

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Talking about death with those who are ill is sometimes the kindest thing we can do

If it is true that death and taxes are the only two certainties in life, it is astonishing how much we readily discuss the latter, but often shy away from the former

There are also many patients who simply want to know what will happen to them as their final days approach

By Jonathan Romain

It is the ultimate question that many of us will have to face one day: do we want to be told that we are dying, or would we prefer to be kept in ignorance?

If it is true that death and taxes are the only two certainties in life, it is astonishing how much we readily discuss the latter, but often shy away from the former.

Perhaps even more surprising is that those professionally qualified to deal with death are equally tongue-tied. This has just been revealed in a Royal College of Physicians’s report, which says that doctors are reluctant to talk about death with patients.

This is a dereliction of duty. As a congregational minister who regularly has to visit those who are seriously ill, it is very clear that some patients would benefit from knowing they are nearing the end of their life

It might be that they wish to sort out their affairs – like Derek, who had never written a will but was prompted to do so by the thought of his demise; or Sandra, who had written one, but it was over 30 years old and needed radical changes.

Alternatively, thoughts of imminent departure can lead to important conversations, whether telling loved ones how much they mean to the person, or, as with Beatrice, contacting the sister with whom she had not spoken for 12 years, and effecting a reconciliation.

There are also many patients who simply want to know what will happen to them as their final days approach. They may be fearful, but it is often not so much of death itself, but of dying and the process that they will experience. Talking about it, and the pain relief on offer, can be very reassuring. It can also allow them time to contact organisations such as Compassion in Dying, which provides support for both them and their families.

Of course, doctors also need to know when not to discuss death, for there are patients who prefer not to be informed. If they wish to take the attitude that “ignorance is bliss” and clearly mean it, then why disturb that bliss?

One of my own relatives had a phobia about death. Whilst a long period of therapy might have uncovered his reasons and allayed his fears, telling him he was going to die a few days before the event, was not appropriate.

How do you know if a person really does or does not want to know the truth about their condition? It can be hard, as long-held views can change when confronted with the reality of death. Asking the patient directly but obliquely is one option, such as: “Is there anything you’d like to discuss or talk about?”, and letting them give a signal either way.

The new report begs the question of why many doctors have been so unwilling to tackle the issue until now. It could be lack of training – which should be rectified as a matter of urgency. It might be their own personal anxieties about death, which should also be addressed before qualifying.

Perhaps it is a worry that, if they do open up the subject with patients, then, unlike mentioning a prescription, it is a conversation that could take half an hour – time they do not have, yet which should be considered an important part of patient care.

There may also be the feeling that death is a failure on their part, seeing their job as to keep patients alive, and a reluctance to admit they cannot help any further. Although admirable, this is misguided, for death can be a natural outcome of a life long lived, or the inevitable consequence of the way it was lived.

It is good that doctors do not want to let patients down, but they may be inadvertently doing so by not talking about death.

Complete Article ↪HERE↩!

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Death doula says opioid epidemic means more end-of-life services needed in the Downtown Eastside

Amanda Page Brown completed her training to become an end-of-life doula last November and now is trying to secure funding to work full time as a death doula in the area of Vancouver hit hardest by Canada’s overdose crisis

The stretch of East Hastings Street that runs through Vancouver’s Downtown Eastside sees emergency authorities respond to thousands of overdose calls every year.

by Travis Lupick

Last fall, Amanda Page Brown visited a friend in the hospital.

“As I was leaving, I saw their roommate laying in bed, skin and bones, and very little life in him,” she told the Straight. In a telephone interview, Brown explained that she recognized the man through her job as a support worker in Vancouver’s Downtown Eastside.

“He was completely alone and no one knew he was there, dying,” she continued. “I asked him if it would be okay if I visited again. He said yes.”

Brown sat with the man once more before he passed away a few days later. “I realized I was the only person who knew,” she said. “I was it.”

The experience affected Brown deeply. “He taught me much over those three final days,” she said. “He taught me the path I’m meant to walk.”

Brown learned that she wanted to help people in the Downtown Eastside make the transition from life to death. Especially those residents who might not have anyone else to be with them during that time. She began researching how she might be able to do that, and found a certificate course at Douglas College.

“End-of-Life Doulas are advocates for their clients and complement the work of the medical community and hospice-palliative care workers and volunteers,” the program’s website reads. “End-of-Life Doulas assist clients in creating and carrying out their health-care treatment decisions, as well as providing support to clients and their family and friends.”

Brown completed her training to become an end-of-life doula (also known as a death doula) last November. Now she’s trying to secure funding to work full time as a death doula in Vancouver’s Downtown Eastside.

Brown said that her plan is to collect support via her Facebook page and an accompanying fundraiser, but hopefully not for more than one year. Then, with a little experience under her belt (plus the previous seven years she’s spent employed in the Downtown Eastside), she’s hoping she can secure a staff position or reliable and sustainable funding from one or several of the many government agencies, private organizations, and nonprofits that operate in the neighbourhood.

“As a doula, you can walk in as a trusted friend. That’s what is needed here,” Brown said. “I want to be able to offer things like bedside vigils. If somebody is going to be taken off of life…and if that person doesn’t want to die alone, then somebody should be sitting with them.”

There are typical scenarios where it’s easy to understand why a death doula might be needed. For example, an elderly Downtown Eastside hotel tenant with an alcohol problem who doesn’t have any family. But Brown described other situations where it might be less obvious how someone could benefit from the presence of a death doula.

“I’ve asked drug users who have had quite a few overdoses, ‘Has anybody ever asked you if you are trying to kill yourself?'” she recounted. Brown said that with folks in that type of situation, she could befriend them and, once a bond is established, offer to help them draft an advance-care plan.

“Hey, I hear that your overdosing a lot,” Brown explained she could say to them. “Does anybody know your wishes in case something does happen to you?…Because we can do this on a legal piece of paper. Why don’t we do this?”

Brown added that these types of conversations can have unintended benefits.

“That might actually open up another conversation about maybe treatment or detox,” she said. “Maybe, maybe not. But it might be another way to open another very important conversation down here.”

There were 367 illicit-drug overdose deaths in Vancouver last year, up from 235 in 2016 and 138 the year before that. For every fatal overdose that occurs in the city, there are many more that are reversed.

Coco Culbertson is a senior programs manager with PHS Community Services Society (PHS), a nonprofit that manages more than a dozen supportive-housing buildings in Vancouver. She also happens to have the same end-of-life doula certificate that Brown has.

Amanda Page Brown is employed as a support worker and wants to become a full-time death doula in Vancouver’s Downtown Eastside.

“There are volunteer networks that provide this service for free, but maybe not necessarily for the population that we support,” Culbertson told the Straight. “There are so many people in the Downtown Eastside who are living with a chronic illness and comorbidity and who become palliative or require some level of hospice. And there are very limited resources for those folks.

“Having someone who has the expertise and the empathy—professionalized empathy—to sit with them as they live out the last few days, weeks, or months of their life, would be an incredibly meaningful thing,” she said.

Culbertson noted that PHS staff often spend time with tenants who have been transferred to a hospital and are nearing the end of their life. But everyone is spread thin, especially since the dangerous synthetic-opioid fentanyl arrived and overdoses skyrocketed, she added.

“Someone who is able to provide more support for people who don’t have a family…that would be an incredibly important thing,” Culbertson said. ” I think it is just as important to offer dignity and humanity in death as it is in life.”

Complete Article ↪HERE↩!

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‘I’m a friend at the end – why I became a death doula’

Hilary Pepiette is an end-of-life doula

When a loved one dies, it is often medical staff, a hospice and an undertaker who deal with the final moments.

But families can now bring them back into the home, engaging an end-of-life doula to take care of the last wishes and arrangements for their loved ones.

Hilary Pepiette, a solicitor, is one of Scotland’s first end-of-life doulas.

She thinks there is a great need for her role as a “friend at the end”.

Hilary told BBC Radio Scotland’s Kaye Adams programme: “An end of life doula is someone who supports and walks alongside a dying person, the family and people close to that person, through the dying process, through the death and sometimes after that.

“The doula is your consistent flexible presence to fill in the gaps and give support emotionally, spiritually and practically in whatever way it is needed for each individual person and your family.”

Hilary believes we have handed over control to the professionals.

She said: “I have seen family members who have died and I think there is a feeling for me that I would love to do more and make sure that people can have the best possible death they can have, and to celebrate life.

“It is about making sure people live their life to the absolute fullest potential as long as they possibly can, and celebrate that, and then help them have the death that they want to have, give them come control over that.

“My mum died at home and while we did the best we could and it was a good death.”

Death is a taboo

But she added: “I wish I knew then what I do now about what was going on for her at that time.

“It’s only in the past 100 years or so that people have stopped caring for their dying family members at home and it all became about hospitals and the medical profession.

“Death has become a taboo and something that people have stopped talking about. But the more we are open about it the better. Being with someone and having those final conversations is so rewarding.”

Hilary thinks people can talk about their end of life wishes more easily with someone who is not family

As a solicitor in Edinburgh, Hilary processed wills and personal business. She decided to take her end-of-life services one step further.

She said: “It felt natural. I have been a private client solicitor for more than 20 years, and through that I have worked with a lot of people planning wills, powers of attorney and advanced medical directives to help them think about and plan for the end of their life.

“It seemed like a natural progression to me to take that one step further and think about what happens after the legal documents have been put in place.”

Hilary’s firm BTO, is the first to offer an end-of-life doula as part of its services.

What does an end-of-life doula do?

A doula will talk and listen to the patient’s wishes and hopes for the way they will die

According to Hilary: “I do things from washing dishes or making their dinner or cutting someone’s nails or feeding them at the end of their life. Also providing the personal care that might be provided in a hospice.

“Also talking. There is a big role for conversation here where it can be really hard within a family to have the difficult conversations about what you want the very end of your life to be like, where do you want to be when you die, who do you want to be there. Do you want music playing?

“It is establishing what the biggest hopes and fears are. What are you most afraid of? Is it pain or losing control of autonomy, of making decisions. Having those conversations is a big part a doula can play.

“Some people are never comfortable talking about it. But most people who are given that opportunity and a safe place to do that are happy to do that and have those conversations.”

Someone who agrees with Hilary is Prof Dame Sue Black, forensic anthropologist and vice chancellor for engagement at Lancaster University, wants death to be celebrated more.

She told Kaye Adams: “It is an inevitability, it is going to happen. What we can’t control is how it happens.

“In the past that would have often been done by family. I think we have become scared of death, we don’t want to admit it exists.”

Prof Black was awarded a Damehood in 2016

Prof Black thinks people have been conditioned to believe in a certain way of doing things.

She said: “People tend to accept there are rules we have to abide by but generally there aren’t. It’s important those left behind feel they have the autonomy to respect the person they have lost in a way that helps them with their grief.

“We think a funeral has to be very specific in that it has to have hymns and speaking, and it doesn’t. We need to have a confidence that those who are left behind have control over the celebration of the person who has been lost.”

She also thinks people should not be afraid of the last moments and to make the most of them.

She said: “I think we forget sometimes when patients are advancing towards the end of life that we think they are not listening and don’t communicate.

“There is some research that suggests the last sense to go may well be hearing so that’s the time we need to tell them how much we love them, how much we care, what a difference they’ve made.

“One of the last things we can do is communicate.”

Complete Article ↪HERE↩!

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Author’s new book looks at dying at home

‘It’s my passion to demystify hospice’ — Karen J. Clayton

 

by

With more Americans living longer and aging in place, more also want to die at home.

Few, however, actually do.

Karen Clayton of Oak Harbor believes more terminally-ill individuals and their caregivers might choose home end-of-life care if they knew more about the physical and emotional support provided by hospice services.

“It’s my passion to demystify hospice so patients and families will use this truly extraordinary care,” she said. “I believe most people think hospice is a really good thing—for someone else. They do not realize they can have six months of quality end-of-life care wherever they live.”

Clayton’s just-released book, Demystifying Hospice: Inside the Stories of Patients and Caregivers, is based on years of experience working as a social worker in public and private hospitals, a hospice, and with the American Cancer Society. She plans to discuss her book and the topic of hospice care at a series of presentations and workshops around Whidbey Island this fall.

Clayton describes herself as a hospice social worker, sociologist, author and a story catcher.

Studies have shown that approximately 80% of Americans would prefer to die at home, if possible. Despite this, 60% of Americans die in acute care hospitals, 20% in nursing homes and only 20% at home.

According to the National Hospice Foundation, many people at the end-of-life are being referred to hospice care too late or not at all.

Many Americans don’t realize hospice care is a benefit of Medicare, Medicaid, VA benefits, and many other insurance plans, Clayton said. Additionally, hospice organizations can help those with no insurance.

“Hospice offers at least six months of care for terminally ill patients and their caregivers,” she added. “So, it’s stunning that, in 2015, half of the U. S. hospice patients had this truly extraordinary care for 17.4 days or less and one-third for seven days or less.”

Home hospice services consist of a team of professionals who regularly visit patients at home and are available 24 hours a day. Nurses, social workers, chaplains and nurse aides comprise the main team and some services also provide massage therapists, even instrumentalists, such as harpists, to play soothing music.

Hospice services also supplies medication and delivers equipment, such as hospital beds, wheelchairs and personal hygiene items.

Clayton’s book doesn’t focus on medical problems but rather the emotional and practical help given by socials workers to patients, caregivers and families.

“The caregiver receives training and support from the team, and it is difficult,” Clayton said. “It helps to have someone to talk with about the types of feelings involved; fear, grief, anger, curiosity about how to help in the best way.”

She also provides caregiving tips and suggests ways to connect with people in their final days.

“It’s good when families spend time with photo albums, old family films, games, movies, playing checkers or chess, remembering the good times in their lives, the things they have contributed through their job or service,” Clayton said. “Quality of life can be maintained when patients are offered activities, food, family interactions within the limits they have.”

Clayton’s book describes the hope, healing and support that home hospice care offers.

Each story addresses some aspect of helping families through the caregiving and grieving process and it offers comfort and understanding to readers who may be going through similar experiences.

“These stories will lift your spirits and touch your heart,” Clayton said. “It’s a joyful thing to learn how to provide good physical and emotional care for the person you love.”

Karen Clayton will discuss hospice care and her book at the following free events open to the public:

Three Journeys: Writing, Caregiving, Publishing; 3 p.m., Thursday, Oct. 18, Friends of the Library, Oak Harbor Library

“Demystifying Hospice” workshop: 1:30 p.m. Monday, Oct. 22, Coupeville Library

“Demystifying Hospice” workshop: 2 p.m. Wednesday, Dec. 5, , Freeland Library

“Demystifying Hospice” workshop: 10 a.m., Saturday, Dec. 8, Langley Library

• More information  HERE!

Complete Article ↪HERE↩!

Demystifying Hospice: Inside the Stories of Patients and Caregivers
Rowman & Littlefield, 2018 Hardcover, 2020 Paperback

Whidbey author, social worker and sociologist, Karen Clayton’s book is listed as one of the “20 Best Hospice Care Books” by Book Authority which creates lists of the most recommended books on business, technology and science. The book is  in 719 libraries, several outside the US, according to WorldCat operated by OCLC (Online Community Library Center). Locally you can find it in the Anacortes, Burlington, Mt. Vernon libraries and the Sno-Isle Library System. Several independent bookstores in the NW carry the book and it’s available online.

“My purpose is to help folk–patients, family members, and medical personnel–understand the services provided by hospice and the value of seeking hospice care when the decision is made to do no more treatment for cure. About 50% of Medicare patients do use hospice; however, about 40% wait until the last 2-3 weeks when they could have this unique comfort care for 6 months!”
                                                                      –Karen Clayton, social worker and sociologist

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The cost of not talking about death to dying patients

By Colleen Chierici

Will you know when it is your time to die? It is a question that has permeated my mind since July 14, 2017. This was the day my mother died. It was a sad day, but it pales in comparison to the months preceding it. A breast cancer that had returned aggressively, a hasty port placement to receive chemotherapy that was too late  and an ICU admission that began many futile interventions that never saved her life, but prolonged my mother’s suffering.

As a registered nurse, I watched a scene unfold that I swore to myself I would never let happen to anyone I loved. Yet, there I was listening to an oncologist discuss a 30 percent chance she would respond to chemo (which did not mean she would be cured) and choosing this inappropriate treatment for my critically-ill mother. I was party to these decisions when my mother couldn’t make them and when she made some recovery in her mental status, she also chose to continue treatments.

Were these decisions well founded? They were missing a key piece of information, that even with my training, I failed to see. My mother was dying. She was dying and none of my mother’s care providers were able to say those words.

Would my family have chosen a different path for my mother, if there had been a more explicit conversation? Resoundingly, yes. If my mother’s health-care providers would have had a deliberate discussion about her impending death my family would never have chosen chemotherapy and instead chose to initiate hospice care.

As a nurse, I have a duty to advocate for patients. Advocating can take many forms, but most often, it is helping patients navigate the complexities of the health-care system as well as explaining the meaning of test results, procedures, and diagnoses. Often, answering the question “What does this mean for me?” In my own practice, I have helped many patients understand the life changes needed to manage, diabetes, heart failure, and coronary artery disease.

But, like the nurses who provided care for my mother, I struggle having explicit conversations about dying with my patients. This does not appear to be an isolated phenomenon. In a 2018 study, researchers in Australia surveyed acute care and critical care nurses to assess their understanding and utilization of end-of-life discussions and care planning. They found that nurses’ own knowledge and rates of participation are low when it comes to end-of-life care.

On the other side of this, is a patient who may not be making a well-informed decision, because they don’t understand their disease is life-limiting or that they are dying. When the focus is shifted from “fighting to live” to “death is imminent,” other care decisions can be made by these patients. They can choose hospice care. Patients who have a prognosis of 6 months or less are eligible.

In hospice, care is shifted from procedures, tests and medications that can cause discomfort or pain for the patient, to comfort measures that improve the quality of one’s last days. Medicare, who pays for this benefit, found that only 12-25 percent of beneficiaries’ days during the last year of life are being spent in hospice. Are we having these conversations with our patients too late? I have coordinated and provided care for patients who only hours before their death have been enrolled in hospice, even though their diagnosis had been terminal and had been known by the patient’s providers for months.

To be sure, there are nurses who are adept at having these difficult discussions about death with patients and their families. But it is not a skill that comes easy to the majority of the profession. Fortunately, there are resources available to help nurses facilitate these conversations in an effective way.

The End-of-Life Nursing Education Consortium (ELNEC) project, for example, is a national education initiative that seeks to educate nurses on better end-of-life care. Their curriculum includes coursework on how to lead effective communication during end-of-life care.  

Perhaps, we need to re-evaluate how we train our nurses to have conversations about death and dying. Have those who are experts at these discussions share their wisdom and teach nurses how to have these conversations in an empathetic and impactful way so that patients can receive the comfort and dignity of hospice care in a timely manner. If we can make these changes in our communication with patients and their families, perhaps, one day we will all know when it is our time to die.

Complete Article ↪HERE↩!