Tag: Conscious Living

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What’s healthy dying?

6 steps on the path for doctors to know

By Timothy M. Smith

Most Americans die in hospitals, but acute care settings are by default focused on saving lives and therefore struggle to deal with death as something other than the unfortunate outcome of having no interventions left to try. An expert in end-of-life care notes that death is an essential part of life for patients and their families and suggests several steps physicians can take to make death a “healthy” experience.

For starters, Chapple said, one should acknowledge that the aim of acute care settings is to rescue patients, to avoid death at all costs.

“If there is an intervention to try, that’s what we’re going to do,” Chapple said, noting that this urge is reinforced by health care payment mechanisms, as well as by family members’ anguish. “So, it’s very difficult to move in a different direction. It’s like a train that you can’t jump off of.”

Trying everything, however, can undermine our cultural and clinical capacity to acknowledge the importance of dying, Chapple said. She suggested taking the following steps to reinforce the concept of dying in a healthy way.

Focus on patient safety and autonomy. “I worry that patients are overmedicated or undermedicated, that we’re not reacting to what’s really happening to the patient,” Chapple said. “Healthy dying is when patients themselves get to choose the agenda and get to take their own time—as long as they’re not suffering at all, or they appear not to be suffering—and we all just take their timetable and let it happen.”

Acknowledge death as a part of life. This begins with making the most of what Chapple called the “critical present” by suggesting that family members take time to reflect on the patient’s life. “It’s sort of antithetical to the way acute care is set up, which is doing all the time, rather than being, rather than existing and noticing the existential significance of where we are right at this moment,” she said.

Reset loved ones’ expectations. In critical care, Chapple often tells families, “This person has never died before, and this is our chance to make it the best dying they can possibly have.” She suggested preparing family members for what might happen logistically, such as transferring the patient to a step-down unit, and noting that the active dying phase can last several days.

Encourage family members to talk to patients. Hearing is thought to be one of the last senses to go in dying patients, so it may help to share memories. “Families may not talk to each other because they think the family knows all the stories,” she said, so members of the care team can help initiate this by asking about significant events in the patient’s life.

Note the importance of religious rituals. Ceremonies, prayers and songs can help make this time meaningful too.

Suggest loved ones say goodbye in their own ways. Let family members know the following, Chapple suggested: “If you want to … say to the person something that you’ve always wanted to say and never had the opportunity or you certainly want them to know before they die, this is the time to do that.”

Complete Article ↪HERE↩!

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When your time is up, I hope you drop like the dead donkey

The sooner we realise we are all going to die the better – it gives us time to get used to the idea

‘It took the death of a neighbour down the road when I was in my 20s to make me realise that one day I myself would die.’

by Padraig O’Morain

The first time I experienced death as real was when I watched a donkey being put down at the crossroads beside the farm I grew up in.

I was probably about seven or eight at the time. The donkey had been around for a few days and nobody knew where she had come from.

Somebody got in touch with somebody and a man came out from Naas to deal with the situation. He must have come to our house first because I remember following him up to the crossroads.

He stopped in front of the donkey and quietly took the humane killer, as it is called, out of a bag. This instrument is like a gun that drives a spike into the brain. He patted the donkey’s head, put the humane killer against her forehead, and killed her.

I’ve always remembered that the donkey was dead when she hit the ground.

I don’t know what happened next. I suppose the man went off, that I inspected the donkey, that the kennels of the Kildare Hunt took her away to feed hounds. That was how we got rid of dead cattle and other large animals.

Spread a tablecloth by the graveside, bring a picnic basket with the cucumber sandwiches, the homemade apple tart, the wine and the lemonade and enjoy

I was no stranger to animals dying, and every year we killed turkeys for the Christmas market. I was able to approach these deaths in a pragmatic manner.

What had really struck me about the donkey was that she died as she fell. I had never realised how quickly life could disappear.

Shortly after the death of the donkey, I found two white candles wrapped up inside a drawer in a sideboard in our gloomy sitting room.

I immediately assumed the candles were for use when either of my parents died.

In all probability, the candles had been put aside for a power cut but, as I say, the room was gloomy. Also, the sideboard has come from a priest’s house in Allenwood where, some years previously, a maidservant was possessed by the Devil. She had had to be exorcised to stop her breaking plates and furniture and terrifying the priest. We called the sideboard “the Devil’s sideboard” and we imagined Satan was inside.

Gloomiest possible conclusion

So it’s understandable I came to the gloomiest possible conclusion.

But that realisation – and I still recall the chill of it – was about the death of other people. It took the death of a neighbour down the road when I was in my 20s to make me realise that one day I myself would die.

This realisation comes to everybody sooner or later and I think sooner is better than later. It gives you time to get used to the idea. It becomes like a shadow, sometimes behind you and sometimes in front of you but you get used to it. I suspect if it comes too late in life it can hit hard, shattering your protective illusion that death happens to the rest of humanity but not to you.

I was led to these thoughts by Laura Kennedy’s recent article in The Irish Times in which she advised that the inevitability of death should motivate us to get on (within reason) with what we want to do.

I agree with her and I would add two points. First, it’s okay to be afraid of dying because to be unafraid of dying is not natural.

Second, if you want to get more out of life, remember that you don’t have to go skydiving, mountain-climbing or jet-skiing unless you want to. For some, going to the movies once a week would make a really big difference to their quality of life. For others, to make a difference, they might have to sail around the world. One type of person is not better than another type of person.

So spread a tablecloth by the graveside, bring a picnic basket with the cucumber sandwiches, the homemade apple tart, the wine and the lemonade and enjoy. And when the time comes I wish you as quick a step out of this world as the donkey had.

Complete Article ↪HERE↩!

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Hospice Physician B.J. Miller: ‘Life is Not a Fight Against Death’

As executive director of San Francisco’s Zen Hospice Project, BJ Miller has helped pioneer the field of palliative care.

By Jim Parker

Hospice and palliative care physician Bruce (B.J.) Miller has made it his mission to help people “live well in the face of death.”

A hospice and palliative care physician at the University of California Helen Diller Family Comprehensive Cancer Center and former executive director of the Zen Hospice Project, Miller speaks nationally about end-of-life care, including the benefits of hospice and palliative care, and was featured in the Netflix documentary short film, End Game.

His new book, A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death, co-authored with journalist Shoshana Berger, is designed to educate the public about the options and obstacles that patients and families encounter at the end of life.

Miller’s has experienced palliative medicine both as a clinician and as a patient. An accident during his college years resulted in the amputation of one arm below the elbow and both legs below the knees.

“Part of the reason that I wound up becoming a doctor is that I came close to death in my own life, earlier than expected and in a dramatic enough way that I had little choice but to sit up and take notice,” Miller wrote in the book.

Miller spoke with Hospice News about perceptions of death in our society and its influence on patients’ choices, including hospice election, how patients should be cared for at the end of life, as well as the policy, practical and financial considerations that can impact that care.

“Hospice is a business too, and is affected by the same mundane staffing issues as any other: Illness, vacations, car trouble. The difference here is that a long wait for a bad latte will never be comparable to a late nursing visit when you are in desperate need for help,” Miller and Berger wrote in the book. “The hospice system is a part of our stressed health care system and that means it is stressed too. Burnout and turnover are significant problems across the industry; meanwhile, training programs struggle to impart the sort of knowledge and grizzled experience that good patient care requires.”

Regarding your book, A Beginner’s Guide to the End, what factors led you to decide that a resource like this was needed?

Being a clinician working in the hospice and palliative care space, I see patient after patient and family after family languish and suffer due to lack of information. This is certainly true anywhere in health care, but especially in our field because our explicit mission is to ease suffering. And this has proven very tricky. Most people don’t know what palliative care is. Many people know what hospice is, but they have so many misunderstandings of it.

I felt there was a need to get a general book out there to cover the waterfront, the hope being that essentially that we could raise the floor. We are not going to blow off the ceiling, but at least we can raise the floor and level the playing field so most everybody has some access to sound, up-to-date information. That was the impulse.

At several points in the book it’s mentioned that there is a kind of taboo around the topic of death. How do you think that influences people’s choices at the end of life, including electing hospice?

Our language gives us away. We have this old-fashioned notion that life is a fight against death, as though death were a foreign invader instead of a natural thing that is completely entwined with life.

We talk about death as a failure. In medicine we say, “He failed treatment.” That they “lost the battle,” and so forth. So we find all these exotic ways to keep the subject at a distance, and in daily life it has become easier and easier to become distracted from this. And it means that so many people wait way too long to elect hospice. And if they do enter hospice at all, it’s often in the final days where there is not much time to do all that we can to bring life to a close and provide some comfort.

Even beyond the election of hospice I think if we built awareness of our mortality into our daily lives, my guess is that we’d be much kinder to ourselves and to each other and much more appreciative of the life we have while we have it.

How do you see the hospice and palliative landscape changing? How you think the space could be different five years from now?

My hope would be that medical training in general absorbs the principles of hospice and palliative medicine and drives this kind of care earlier into the picture. Just about any clinician of any stripe should have some kind of basic facility with these concepts — eventually 100% of their patients are going to die.

My hope is that our workforce grows to meet the rising demand, and that payment gets worked out so people are incentivized to pursue careers in this important field. From a policy standpoint, hopefully there will be some legislation passed promoting training for hospice and palliative care.

I do think we in the field also really have to take quality seriously. We used to be able to just absorb the idea — it was just a fact that hospice in particular provided superior quality care as a medical model — and that’s still largely true. But we have to be careful, it’s not just about getting more people into the field; we have to keep our eyes on quality.

Do you think that current payment models for hospice, in particular the Medicare Hospice Benefit, are copacetic with the mission of providing multidisciplinary person-centered care in accordance with patients’ goals and wishes for end of life?

I think in general the hospice benefit does a very good job. I think its sticking points are the requirement that patients have six months or less to live and the idea of all the things that you can’t do while you are on hospice.

Those things made sense in 1982, but they don’t make much sense anymore. For example there are a ton of treatments that might be considered life extending that are actually palliative in nature. I see a lot of patients who are fully aware of all these trade offs and forestall their hospice election because they want access to certain treatments that could maybe help them live longer but also could make them feel better.

So those two sticking points are ripe to be revisited. Otherwise I think the hospice benefit is very sound, but I wonder how much longer the hospice benefit will look like the hospice benefit of today.

How do you feel about a possible Medicare Advantage carve-in for hospice?

I am not a policy expert, and there may be some counter arguments. but I wonder what the unintended consequences of that would be.

Right now Medicare sets the guidelines, and therefore there is a centralized power and policy hub. In sending the hospice benefit to private companies, will Medicare Advantage plans be allowed to dictate their own hospice benefit? If so, I have to imagine quality would go down due to cost-cutting measures which ultimately would also be quality-cutting measures.

You have spoken about how the health care system has diseases rather than people at its center. Do you think that is starting to change and how can the health care community accelerate that change?

I believe it’s starting to change in that the phrase “patient-centered care” is pretty well known and recognized, and I don’t hear anyone arguing against patient-centered care. So I think there’s an opening dialogue around it.

But I also watch some of my medical colleagues roll their eyes at it, and for good reason: Our population, health, and disease and treatments are so complex that it’s practically impossible for patients to make an informed decision, because we haven’t done a very good job of educating them. So it’s unrealistic to say that we can do whatever the patient wants.

What it is realistic is a shared decision-making model in which your clinician is your advocate and together you are working on a plan that’s realistic for the options in front of you, and together you make decisions. I think that’s the golden chalice we are trying to find.

A good example is that if you were to follow patient satisfaction surveys — if those were the gold standard of a patient-centered system — data show that patients prefer doctors who prescribe more medications because that feels like their doctor cares, but more medications is not always the best clinical choice.

That’s a case in point where it’s much more complicated than the satisfaction of the patient or the family, so I think the refinement here is to elevate the patient’s voice in the decision-making process and do the listening on our side as clinicians and encourage patients to speak up for what’s important to them, and together move forward. That is how things should work.

One of the most pervasive barriers to bringing patients into palliative care and hospice is awareness. Most people simply don’t know what these things are. What can hospice and palliative care providers do to move the needle on that issue?

No one seems to understand the difference between hospice and palliative care, and I wonder what policy could come along to help smooth out these false divides. I keep waiting for someone to organize a kind of mass public service announcement, explaining to the public what the solutions are and explaining the field.

As a clinician I am explaining the distinctions to people all the time, and I struggle to do it in a succinct manner; so I think that you need some real communications expertise. It’s a very tricky and complicated communications challenge to distinguish between these concepts in a way that is understandable and relatable, especially when for a lot of people it’s inborn to want to look away.

I would love to see some sort of mass public communication effort. That would go very far even among the health care community. Many of my doctor and nurse colleagues themselves couldn’t tell you the difference between hospice and palliative care. That is very common, so we have a massive communications problem that will take a multimillion dollar effort to get past.

You have spoken about the need to bring intention and creativity into dying. Where does hospice fit into that?

Dying is way bigger than a medical event. Hospice begins with a conversation about what is important to the patient and what is not important to them, and just the nature of that conversation helps people to live with intention.

You help and encourage them to think through what is important, what can they live with, what can they live with, coming to terms with the finitude of their time, and then you can work from there and to some level design your days. Hospice facilitates those conversations all the time.

I think the creative spark is a way of life, a way of thinking in which daily life is a creative act, including at the end of life. We are all improvising all the time, bobbing and weaving, checking our plans versus the reality on the ground. Creativity often flows from reaction to limitations, and this is our limitation: We don’t have endless time.

Complete Article ↪HERE↩!

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Emptiness and Filling Out Forms:

A Practical Approach to Death

Dying with compassion means having a plan in place for those left behind. A practitioner recounts how she navigated the process with her dharma friends.

By Rena Graham

As a Tibetan Buddhist practitioner, I am constantly reminded that we never know when death might approach, but for years, I’d avoided dealing with one of the most practical aspects of death—the paperwork. I was not alone: Roughly half of all adults in North America do not have a living will. Then recently, I suffered a near-fatal illness that left me viscerally aware of how unprepared for death I was, and I made a pledge with two of my friends to get ready to leave our bodies behind for both ourselves and the people who survive us.

Bridging the end of December 2017 and the beginning of January 2018, I spent a month in a Vancouver, British Columbia hospital with a bacterial lung infection that had also invaded my pleural cavity—the first time I’d come down with a severe illness. After ten days in an intensive-care unit, I was moved to a recovery ward where I suffered a relapse. I spent my 62nd birthday, Christmas, and New Years with strangers in the hospital.

One night in the ICU, while I was partly delirious and falling in and out of sleep, I had a vision of a deceased friend reaching out to me. From what felt like disengaged consciousness, I looked down at my body on the hospital bed and realized I wasn’t ready to die. I hadn’t studied my lama’s [teacher’s] bardo teachings to navigate the intermediate state between death and rebirth, and did not want to take that journey without a road map. It didn’t matter whether this was a drug-fueled hallucination or an actual near-death experience. The important thing is that I rejected death, not out of fear, but through a recognition of the dreamlike nature of reality. After this experience, I felt that my attachment to this life and the things in it had diminished. I no longer wanted to ignore what came next. I wanted to be prepared. 

When I told my friends Liv and Rosie about this vision, we agreed to study the bardo teachings together once I’d had a couple of months of recuperation. By March, however, our plans shifted. Rosie had heard about a man (I’ll call him Ben) who had died on Lasqueti Island, an off-the-grid enclave in Canada’s Southern Gulf Islands that a local cookbook once described as “somewhere between Dogpatch and Shangri-La.” He had left his closest friends without any instructions. They had no idea if he had a family or where they might be.

“And he left an old dog behind!” Rosie said, “Can you imagine?”

“Not the bodhisattva way to die,” I replied, referring to the Buddhist ideal of compassion. I  also imagined what mess I might have left, had I not made it. 

Promising they would never leave others in such a quandary, Ben’s closest friends created a document called the Good to Go Kit, which detailed information required for end-of-life paperwork. (It is now sold at the Lasqueti Saturday market to raise funds for their medical center.)

“I’ve been wanting to make a will for 20 years,” said Liv, who would soon turn 70, “but research throws me into information overload, which adds to the emotional overwhelm I feel just thinking about it.”

“What if we did this together instead of studying the bardo?” suggested Rosie, who was in her early 50s.

Writing a will, figuring out advanced healthcare directives, and noting our final wishes didn’t have the mystical lure of bardo teachings, but we set that aside for a year while we took on this more practical area of inquiry. 

To use our time wisely, we set several parameters in place. We decided to meet one weekend a month to allow time for research and reflection between meetings, and we chose to keep our group small for ease of scheduling and to allow us to delve deeper into each topic.

 “I’d like this to be structured,” said Liv, “so it doesn’t devolve into a social event.”  

Rosie and I agreed but we knew better than to believe there didn’t need to be some socializing. She offered her place for the first meeting and said she’d cook. 

“We’ll get our chit-chat out of the way over dinner,” she said. “Since we can all be a little intimidated by this process, we have to make it fun.”

Later in March at Rosie’s garden suite, we sat down to dinner and Liv passed out copies of “A Contemplation of Food and Nourishment,” which begins with the appropriate words: “All life forms eat and are eaten, give up their lives to nourish others.” The prayer was written by Lama Mark Webber, Liv and Rosie’s teacher in the Drikung Kagyu school. (I also study with Lama Mark, although my main teacher, Khenpo Sonam Tobgyal, is in the Nyingma lineage.)  Turning our meetings into sacred practice seemed the obvious container to keep us on topic.

After dinner, Rosie rang a bell, we said a refuge prayer and recited the traditional four immeasurables prayer to generate equanimity, love, compassion, and joy toward all sentient beings.  

We traded our prayers for notebooks and reviewed our Good to Go Kit. Rosie smiled at the expected question of pets—including the name of the person who would be caring for the pet, the veterinarian and whether money had been set aside for their expenses. The form also asked whether we had hidden items or buried treasure.

Liv laughed and said, “People still bury strongboxes in their backyards?”

My answer was more prosaic: “Storage lockers.”

Rosie, Liv, and I are all single and childless. We are all self-employed and independent and have chosen Canada as our adopted homeland, meaning we have no family here. So we considered what roles friends might play and focused on those who were closer geographically than sentimentally. 

Pulling them in to act on our behalf seemed like such a “big ask” as Rosie said, but it was time to get real about our needs. The three of us shared our feelings about involving friends outside the dharma versus those within. 

When I was in the ICU, my friend Diane visited on several occasions and later told me she remained calm until she reached her car, where she cried uncontrollably. In marked contrast, my dharma friend Emma calmly asked what I needed and didn’t make much of a fuss. My Buddhist friends tend to view death as a natural transition from one incarnation to the next, while other friends may see it in more dire terms: as a finality or even failure. For end-of-life situations, asking non-Buddhist friends for limited practical support seemed kinder for all involved. 

We started to familiarize ourselves with the responsibilities of someone granted power of attorney for legal and financial proxy and enduring power of attorney for healthcare. Months later, we agreed our network of “dharma sisters” would be the perfect fit. While we hope to maintain our ability to make decisions for ourselves, should we require long-term care, we felt the baton could be passed between a dozen or so trustworthy women. We have since spoken casually about this with a number of these women and have made plans to organize a get-together and discuss our plans in greater detail, offering reciprocal support for what the Buddhist author Sallie Tisdale calls “the immeasurable wonder and disaster of change.” 

We concluded our five hours together by dedicating the merit and reciting prayers of dedication and aspiration. Long-life prayers for our lamas were offered, a bell rung, and heads bowed. Without the need for further conversation, we made our way into the chilly spring evening, silently reflecting on our new endeavor.

The next meeting and those following included menus and discussions that varied widely. Our research grew monthly with documents from government agencies, legal and trust firms, and funeral homes. None of which felt specific to Buddhist practitioners, until Rosie told us about Life in Relation to Death: Second Edition by the late Tibetan teacher Chagdud Tulku Rinpoche. This small book is out of print, but I purchased a Kindle copy. In the introduction, Chagdud Tulku, a respected Vajrayana teacher and skilled physician, reminds us that “[t]here are many methods, extraordinary and ordinary, to prepare for the transformation of death.” A book of Buddhist “pith instruction,” it includes in its second edition appendices that above all I found most valuable. These include suggested forms for “Durable Power of Attorney for Health Care,” “Advance Directive for Health Care (Living Will),” “Miscellaneous Statements for Witnesses, Notary and Physician,” and “Letter of Instructions.” It even includes a wonderful note for adding your ashes to tza-tsas, small sacred images stamped out of clay. We loved that idea, though we couldn’t imagine asking friends to go to that extent to honor our passing. 

We decided to use a community-based notary public to draw up our wills, but with further research, Liv realized she could also hire them to act as her executor, rather than use her bank. She found someone experienced and enjoyed the more personable experience. In contrast, Rosie and I’ve decided to pay friends now that we’ve found ways to simplify that process for them. 

Memorial Societies are common in North America and help consumers obtain reasonably priced funeral arrangements. Pre-paying services at a recommended funeral home allows us to leave funds with them for executor expenses, should our assets be frozen in probate. End-of-life insurance “add-ons” we like include travel protection—should we die away from home—and a final document service to close accounts and handle time-consuming administrative tasks. 

In her book Advice for Future Corpses (and Those Who Love Them): A Practical Perspective on Death and Dying, Sallie Tisdale says, “Your body is the last object for which you can be responsible, and this wish may be the most personal one you ever make.” Traditionally in Tibetan Buddhism, the edict is to leave the body undisturbed for three days after death so your consciousness has time to disengage. Tisdale states that American law generally allows you to leave a body in place for at least 24 hours and that while a hospital might want to give you less time, you might be able to negotiate for more. 

We then turned to the thorny topic of organ donation, with Rosie and Liv both deciding against. Knowing someone would soon be taking a scalpel to your cadaver would not enhance the peaceful mind they hope to die with, while my view was just the opposite. Besides gaining merit through donation, that same scalpel image provides great motivation to leave the body quickly.

While reading Tisdale’s chapter titled “Bodies,” I began entertaining thoughts of a green burial, but after months of discussion, I ended up where we all started: with expedient cremations. Rosie wanted her ashes buried and a fragrant rose bush planted on top. Liv and I were more comfortable in the water and decided our ashes would best be left there, but not scattered to ride on the wind. We selected biodegradable urns imprinted with tiny footprints. Made of sand and vegetable gel, they dissolve in water within three days, leaving gentle waves to lap our remnants out to sea. 

By getting past the practical and emotional aspects surrounding death, Liv has found herself in a space of awe. 

“There’s a wow factor to dying that I can now embrace,” she said. 

Rosie no longer worries about who will care for her in later years. Without that insecurity, she’s left with a yearning to be as present for the dying process as possible. And I have found that my understanding of life’s importance as we reach toward enlightenment has been heightened. 

Our small sangha still meets monthly and is now studying bardo teachings in our ongoing attempt to create compassionate dying from compassionate living. As we have continued with our arrangements, we’ve reflected on what we gained from our meetings. We feel blessed for the profound level of intimacy and trust we now share. We have a deeper regard for other friendships and feel enveloped by an enhanced sense of community. And we all feel more cared for.

As Chagdud Tulku Rinpoche wrote in Life in Relation to Death: “Putting worldly affairs in order can be an important spiritual process. Writing a will enables us to look at our attachments and transform them into generosity.”

Complete Article ↪HERE↩!

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Struggling to die in peace:

A family fights to turn off a pacemaker

In 2010, the American Heart Association, American College of Cardiology, the American Geriatrics Society and other prominent groups issued a statement indicating that the deactivation of a pacemaker, an implantable device used to speed up slow heart beats, is ethically permissible.

By Jennifer Friedlin

For the past month, my mother and I have been advocating for the deactivation of my father’s pacemaker. Yet despite my parents having taken every measure to ensure that they would control the ends of their lives, two months since a severe stroke destroyed whatever quality of life my father, who was already suffering from advanced dementia, had left, his heart continues to beat against my family’s wishes.

In 2010, the American Heart Association, American College of Cardiology, the American Geriatrics Society and other prominent groups issued a statement indicating that the deactivation of a pacemaker, an implantable device used to speed up slow heart beats, is ethically permissible. Reaffirmed last year, the statement says, “Legally, carrying out a request to withdraw life-sustaining treatment is neither physician-assisted suicide nor euthanasia.”

Nevertheless, the team of medical professionals at Parker Jewish Institute for Health Care and Rehabilitation has given us the runaround. Most recently, my mother and I met with my father’s team of medical professionals to discuss moving my father into hospice as well as deactivating the pacemaker so that my father could live out his days naturally. During the course of the meeting, my mother, who is my father’s proxy, made clear that this would be my father’s wish.

According to the law, the request is my mother’s prerogative. In 1990, in Cruzan vs. Director, Missouri Department of Health, the Supreme Court ruled that a competent patient could refuse life-sustaining treatments, including nutrition and hydration. This case gave rise to advance directives so that a proxy could carry out the patient’s will. In a later case, the Court affirmed the right of competent patients to refuse therapy.

The medical team agreed to hospice, but has so far refused to carry out the request to deactivate the pacemaker. We have had several long conversations with the medical team, and, while they seem to agree with our desire to give my father a dignified end, they offer confusing explanations as to why they will not carry out my dad’s wishes.

At one point, a staff member told me that because a pacemaker does not prolong life, we should leave it. But my father’s pacemaker is working 53% of the time to correct his condition, known as bradycardia, which can result in heart failure. I fail to see how this device is not prolonging my father’s life or, at the very least, interrupting the possibility for his natural demise.

We are certainly not the first family to confront the medical community’s refusal to deactivate a pacemaker. Katy Butler, author of “The Art of Dying Well,” has written extensively about her efforts to give her father the death he wanted by deactivating his pacemaker. Butler also uncovered other horrors, such as cardiologists recommending pacemakers for elderly people with advanced dementia.

Much of the motivation, Butler noted, seemed to stem from the financial rewards of treating people, even the terminally ill. Simply put there’s no money in death. And yet in its current design, at $450 a day for room and board alone, institutions like the Parker Institute rake in millions annually from people whose lives are being maintained artificially. The medical system could quite literally bankrupt healthy family members to keep a dying one alive.

Although estimates vary, each year approximately 400,000 people — half over age 75 — get implantable cardiac devices, including pacemakers. Primary care doctors, cardiologists, and elder care attorneys should inform people about how these devices can affect their end of life and encourage them to include their wishes in advance directives.

Yet, even if they do, they may hit the same wall of refusal my family has faced. It seems that despite the legal rulings and the ethicists’ writings, doctors are committed to keeping pacemakers ticking.

It’s unfair to the terminally ill and their families that this view prevails. The refusal to deactivate means the sick family member is denied a dignified death, while the need for constant advocacy leaves family members feeling like they are making an unseemly demand.

As the debate about healthcare builds in the run up to the 2020 presidential election, I hope that the candidates will discuss reforms to improve end of life care. There should be dignity in death for the terminally ill and no healthy person should be forced into bankruptcy to keep a loved one alive against his or her will. There are certain people we should spare no expense to keep alive, in our family’s opinion my father is not one of them.

Complete Article ↪HERE↩!

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Scared of death?

An end-of-life coach might be the answer

By

You may be familiar with birth doulas. These coaches, or “birth companions” assist pregnant women through the delivery of their child and postpartum recovery. They’re not OBGYNs, but they are highly trained in how to offer emotional and physical support and guidance to a mother.

Sound nice? Plenty of moms-to-be think so, and the doula movement has been growing steadily over the past couple of years. Now people on the other side of the life spectrum can contact doulas as well to quell fears about dying and ease their transition.

In order to decide if an end-of-life doula is right for you, it’s first important to understand what exactly they are, and what they’re not.

First off: The preferred term is, in fact, end-of-life doula, rather than “death doula.” Death doula admittedly has an intriguingly spooky, cultish air about it, but it tends to perpetuate negative misinformation about the role, like the idea that these doulas assist in administering lethal injections. And in order to bring awareness to any movement or group, it helps to consistently use the same terms.

To find out more, Considerable spoke with Deanna Cochran, founder of Quality of Life Care and one of the founding directors of the National End-of-Life Doula Alliance. 

“I’ve been doing this since 2005, before there was a death-positive movement at all,” Cochran said. “What was going on was a scattering around the world … I found them when I began blogging in 2006 as a private end-of-life doula.

“I thought I was going to cause a scene doing what I was doing … I wanted everyone to know that you can have this medicine, these treatments, this therapy long before you’re sent to hospice. Nobody wants to admit they’re dying, but then people have miserable experiences dying because they’re not getting palliative care.”

So what exactly is an end-of-life doula, and how are they different from, say, a hospice nurse or in-home caregiver?

Cochran described an end-of-life doula as “a person who accompanies another through dying and death — holistic, nonmedical, practical support.”

Doulas don’t exist separately from hospice care. In many cases, end-of-life doulas work in conjunction with hospices to provide an overarching holistic experience.

“End-of-life doulas accompany hospice,” Cochran explained. “Hospice is fantastic, but the problem is they don’t have the kind of time that might be needed. Nurses can’t stay with a patient for hours and hours — sometimes the hospice would like more support for the patient but the hospice doesn’t always have the volunteers available.”

“[Think of a doula] kind of like a firefighter; the doulas understand that you never know when vigils or a high-need situation is going to happen, and they’re willing to go out there in the crisis situations. Hospice volunteers are not expected to tend to crises; they’ve planned their volunteer schedule. The doula team is that kind of team within hospice.

“We’re like mediators or advocates; we’re not advocating for the family against the system — we’re advocating for the family and the system.”

In many ways, doulas act as a bridge between the other care services end-of-life patients will receive. 

“Information gets lost between nursing home, hospital, and rehab. Medications get lost along the way, people aren’t getting informed, so a doula can make sure everyone’s informed all along the way,” Cochran said. “At death the [hospice care] team is gone; bereavement is a new team. But a doula is entered into the system before death, during, and after, during bereavement. They offer an extra layer of support not just for the family, but for the hospice team. Extra expertise, extra training, and they know their place alongside hospice. It’s not a different agenda.”

Doulas are trained to assist both the dying patient and their loved ones through all stages of death, something that most hospitals and hospices don’t supply. They have to be incredibly empathetic and ready to jump in with an appropriate care response in all manner of situations.

“[Doulas] have to be OK being a witness and not a savior; a companion, not a leader. They have to come in with curiosity, not a plan. They have to be very self-aware,” Cochran told Considerable.

Death and the dying process is a sensitive, tricky subject, and some misconceptions about end-of-life doulas have arisen as a result. Doulas are often referred to as spiritual, and their approach to help and healing has spiritual elements. “Spiritual is a term that especially means vastly different things to different people, and some patients may feel concerned by that definition.

“Doulas are not trying to replace the [hospice] chaplins by providing spiritual care. Just by being present, that’s spiritually supportive,” Cochran explained.

And, especially importantly: “We are not euthanizers! There was an ugly article insinuating that death doulas ‘do the final thing’ … Absolutely not. That has nothing to do with us. We would never be responsible for the final medication in any assisted death. That’s not our role.”

Cochran also mentioned that doulas are especially important these days because the way we die has changed. 

“We’re living with chronic illnesses for a long time. Modern marvels are promising to keep us alive; we’ve never died like this before, of course people are scared.”

By becoming aware of the dying process sooner, and as medical science keeps terminally ill patients alive for longer than these diseases used to allow, patients have more time to contemplate death and face the reality of what the end of their life will entail.

“In advanced illness, everyone in the care system is focusing on life, even in the face of dying,” Cochran said. “Let’s start having gentle, realistic conversations that this train isn’t going backwards. Let’s focus on excellent symptom management and care for the whole family to support you as best as possible and not traumatize you through a system that’s trying to turn you around when you’re not going to.”

To find out more about end-of-life doulas, and where to find one in your area, check out NEDA’s website.

Complete Article ↪HERE↩!

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‘Dying is so medicalised. It makes people fearful’

The founder of Soul Midwives on how greater compassion and care can lead to people having a more gentle, tranquil death

Felicity Warner: ‘We need to take the care of dying people back into the community.’

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Felicity Warner wants everyone to die well. She is the woman behind Soul Midwives: non-medical companions who provide one-to-one holistic and spiritual care to people who are dying. The term “midwife” is no accident. It refers to the similarities between drawing our first breath and our last. Just as there are certain stages for a woman in labour prior to giving birth, so are there certain end-of-life stages before someone eventually dies, says Warner. It’s the same idea as end-of-life doulas. “A soul midwife will recognise those stages and will work with them like a midwife would at birth.”

Soul midwives support a dying person to set out their wishes for the final days in a death plan. They listen, keep vigil, allow people to talk openly about their impending death and fears, and provide therapeutic support to help alleviate anxiety and pain. This can be through breathing techniques, massage, sound and music therapy and essential oils. As the “soul” in the title suggests, the role also offers a spiritual dimension linked to healing and detachment. But it’s not just about helping people to die without fear, loneliness or anxiety. It’s also about making people realise they are valued, says Warner. “I’m very keen on that because a lot of people we work with don’t have anyone in their lives. Making them feel that they are special is a very big part of our role and to honour them as the people that they have been, because you can be made to feel very anonymous when you’re dying, whether old or young”.

The daughter of the former Conservative MP David Mudd, Warner cites the “harrowing deaths” of her grandmother – with whom she had lived after her parents divorced when she was six, who died of lung cancer when Warner was 14 – and her stepfather two years later that forced “an enormous amount” of processing and reflection early on and led her to become a health journalist.

In the 1990s, Warner found herself writing a number of features about women dying of breast cancer. Interviewees revealed their loneliness and isolation and the sense of being locked in a room with an elephant in it. “The biggest thing was the feeling that they couldn’t talk to anybody honestly about the fact they knew they were going to die, because everybody kept saying ‘we’ll get you through this; you won’t die’.”

They talked and Warner listened. “I think there was a healing in that they could just talk frankly about how they really felt to somebody who wasn’t judgmental in any way.” But Warner saw her journalistic boundaries begin to slide as she stepped in to fill unmet needs, such as giving a massage after one of the women confided that “nobody touches me any more” because of her cancer. When the last of six women she had interviewed died, her decision to help dying people full-time was realised.

She began volunteering in her local hospice, where she noticed “big gaps” in care delivery: the “one-size-fits-all” approach, for example, that saw everyone “wrapped up with crocheted blankets” and “given plastic cups to suck out of”, regardless of their age or their personal needs.

“I sat there thinking it would be so useful if someone could join up the dots in what I was seeing with people who were dying. If there could be some kind of middle ground between the clinical care given and the sort of tender loving care that goes such a long way when you’re really feeling ill, because that seemed to be very lacking or offered very willy-nilly and not always to everybody.”

Warner began road-testing what would become her “gentle dying” approach – the basis of soul midwifery. “It was realising how little things can make such a difference to people at the end of life. Even just sitting and holding their hand is massive to someone who has got no one else sitting with them, and having time to do that is a big thing.”

Warner outlined her philosophy in a book in 2003, then began delivering training in Dorset, where she lives. So far, more than 1,000 individuals have paid to attend her courses, including Macmillan and Marie Curie nurses, doctors, chaplains, social workers and psychotherapists working in the NHS, as well as people from South Africa, Canada, the US and Australia. Around 40% of trainees have gone on to practice.

Warner runs a referral service from the Soul Midwives website. Many practitioners offer sliding scale charges, opt for a donation or charge nothing at all. “Nobody would ever be turned away if they could not pay,” says Warner. “It is not about the money. Nobody would be excluded on financial grounds.”

Soul midwives can now be found in care homes, hospices, hospitals and within the home throughout the UK. They liaise with GPs and district nurses if someone wants to die at home. Warner admits that it’s taken time to build trust with other care professionals, but adds, “this trust has grown as the value of our work is being understood and seen.”

For her, soul midwifery is a movement that can fill the gap once met through closer community networks and she views dying as a process rather than an event – something that she feels has been lost over the generations. Recently Warner has introduced the idea of soul midwife “residencies” so that end-of-life discussions leave the confines of hospitals and hospices. “We need to bring the care of dying people back into the community. It’s been so medicalised and taken out of most people’s normal environment, and that makes it very fearful [for people].”

She cites a recent example of a soul midwife pitching up at a library for a morning so that people could come and discuss various aspects of dying. She now hopes to persuade a coffee shop chain to host residencies.

What is clear is that ensuring a tranquil, gentle death for others is also good for Warner’s own soul. She says: “I feel it’s my reason for being here.”

Complete Article ↪HERE↩!