Dying Wisely and Well – Page 120 – The Amateur's Guide To Death & Dying

December 16, 2015December 16, 2015

Sherwin Nuland on the Art of Dying and How Our Mortality Confers Meaning Upon Our Lives

“The greatest dignity to be found in death is the dignity of the life that preceded it.”

BY MARIA POPOVA

“To lament that we shall not be alive a hundred years hence, is the same folly as to be sorry we were not alive a hundred years ago,” Montaigne wrote in his timeless meditation on death and the art of living. And yet in the half millennium since his day, we’ve made paltry progress on coming to such nonchalant terms with the reality of death. We are still profoundly unpreparedwhen it strikes our loved ones and paralyzed by the prospect of our own demise. Our discomfort with “the idea of a permanent unconsciousness in which there is neither void nor vacuum — in which there is simply nothing” is what surgeon, bioethicist, essayist, and Yale professor Sherwin Nuland(1930–2014) explores with astonishing wisdom and sensitivity in his soul-stretching 1993 book How We Die: Reflections on Life’s Final Chapter (public library) — a dimensional treatise on death and an effort to “demythologize the process of dying,” fusing philosophical reflections on its most universal aspects with the specialized complexities occasioned by the six most common disease categories implicated in modern death.

But Nuland’s hard-earned professional expertise, his life’s work in medicine and understanding the human condition, is merely the byproduct of his unforgiving personal brush with death — Nuland lost his mother to colon cancer a week after his eleventh birthday, a tragedy that shaped his life. “All that I have become and much that I have not become, I trace directly or indirectly to her death,” he reflects. This book itself was written less than a year after Nuland lost his brother to the same disease that had claimed their mother’s life.

Nuland writes:

Everyone wants to know the details of dying, though few are willing to say so. Whether to anticipate the events of our own final illness or better to comprehend what is happening to a mortally stricken loved one… we are lured by thoughts of life’s ending… To most people, death remains a hidden secret, as eroticized at it is feared. We are irresistibly attracted by the very anxieties we find most terrifying; we are drawn to them by a primitive excitement that arises from flirtation with danger. Moths and flames, mankind and death — there is little difference.

[…]

As with every other looming terror and looming temptation, we seek ways to deny the power of death and the icy hold in which it grips human thought.

Throughout history, he observes, our strategies for ameliorating that icy hold have varied, from mythology to humor to religion, but the past few decades have given us a wholly new phenomenon, one he dubs “modern dying” — a sort of packaged experience that takes place at the hospital, where we try to artificially enact the ancient ideal of ars moriendi, or the art of dying. Reflecting on his extensive work with dying patients, Nuland considers the impossibility of that ideal in a modern context:

The good death has increasingly become a myth. Actually, it has always been for the most part a myth, but never nearly as much as today. The chief ingredient of the myth is the longed-for ideal of “death with dignity.”

[…]

The belief in the probability of death with dignity is our, and society’s, attempt to deal with the reality of what is all too frequently a series of destructive events that involve by their very nature the disintegration of the dying person’s humanity. I have not often seen much dignity in the process by which we die… Only by a frank discussion of the very details of dying can we best deal with those aspects that frighten us the most. It is by knowing the truth and being prepared for it that we rid ourselves of that fear of the terra incognita of death that leads to self-deception and disillusions.

And yet despite lamenting the illusory mythology of dying with dignity, Nuland’s perspective is ultimately an optimistic one, reframing the source of dignity in death rather than denying it altogether, and doing so in wonderfully poetic terms:

The greatest dignity to be found in death is the dignity of the life that preceded it. This is a form of hope that we can all achieve, and it is the most abiding of all. Hope resides in the meaning of what our lives have been.

But our greatest act of hope in dying, Nuland argues, is the dissolution of our illusion of separateness. He writes:

The real event taking place at the end of our life is our death, not the attempts to prevent it. We have somehow been so taken up with the wonders of modern science that our society puts the emphasis in the wrong place. It is the dying that is the important thing — the central player in the drama is the dying man: the dashing leader of that bustling squad of his would-be rescuers is only a spectator, and a groundling at that.

Reflecting on the commonly documented medical fact that the dying can often survive for weeks beyond their prognosis, sustained merely by the hope to live until a specific moment of significance — a daughter’s wedding, a grandchild’s graduation — Nuland calls to mind Rilke’s famous lines of verse (“Oh Lord, give each of us his own death / The dying, that issues forth out of the life / In which he had love, meaning and despair”) and considers the true source of hope:

For dying patients, the hope of cure will always be shown to be ultimately false, and even the hope of relief too often turns to ashes. When my time comes, I will seek hope in the knowledge that insofar as possible I will not be allowed to suffer or be subjected to needless attempts to maintain life; I will seek it in the certainty that I will not be abandoned to die alone; I am seeking it now, in the way I try to live my life, so that those who value what I am will have profited by my time on earth and be left with comforting recollections of what we have meant to one another… Whatever form it may take, each of us must find hope in his or her own way.

Nuland turns to the heaviest burden in dying, the feeling of regret over “conflicts unresolved, breached relationships not healed, potential unfulfilled, promises not kept, and years that will never be lived.” But even in this despairing proposition, he finds an unlikely and rather beautiful source of hope. Subverting Viktor Frankl’s famous formulation of the oft-repeated idea that we should live each day as if it were our last — “Live as if you were living already for the second time and as if you had acted the first time as wrongly as you are about to act now!” Frankl wrote in his spectacular memoir about the search for meaning — Nuland finds consolation in a heartening mirror-image interpretation:

Perhaps the mere existence of things undone should be a sort of satisfaction in itself, though the idea would appear to be paradoxical. Only one who is long since dead while still seemingly alive does not have many “promises to keep, and miles to go before I sleep,” and that state of inertness is not to be desired. To the wise advice that we live every day as though it will be our last, we do well to add the admonition to live every day as though we will be on this earth forever.

He returns to the hard ideal of ars moriendi, now enveloped in this newfound softness:

Since human beings first began to write, they have recorded their wish for an idealized ending some call the “good death,” as if any of us can ever be sure of it or have any reason to expect it. There are pitfalls of decision-making to be sidestepped and varieties of hope to seek, but beyond that we must forgive ourselves when we cannot achieve some preconceived image of dying right.

But perhaps Nuland’s most salient point has to do with the necessity of death as a force of nature’s forward momentum — an idea partway between evolutionary theory and the Japanese concept of wabi-sabi, with a touch of Alan Watts. He writes:

We die so that the world may continue to live. We have been given the miracle of life because trillions upon trillions of living things have prepared the way for us and then have died — in a sense, for us. We die, in turn, so that others may live. The tragedy of a single individual becomes, in the balance of natural things, the triumph of ongoing life.

In that sense, the dignity of death is indeed the dignity of life, and our only responsibility in dying well is having lived well:

The dignity that we seek in dying must be found in the dignity with which we have lived our lives. Ars moriendi as ars vivendi: The art of dying is the art of living. The honesty and grace of the years of life that are ending is the real measure of how we die. It is not in the last weeks or days that we compose the message that will be remembered, but in all the decades that preceded them. Who has lived in dignity, dies in dignity.

How We Die is a timelessly wonderful read in its entirety. For a necessary counterpart, see Meghan O’Rourke’s beautiful memoir of grief and learning to live with loss.

Complete Article HERE!

December 14, 2015December 14, 2015

Palliative and End of Life Care

By Ellen Fink-Samnick

We all know the cost of care at the end of life (EOL) tends to be needlessly wasteful. And we know that, too often, the wishes of patients are ignored, or worse, unknown. As the healthcare system adopts a patient-centered approach, it is important we ask every dying patient and their family what they want. When we do, we find that most would say they want less care and more quality of life in their final days. This is especially pressing today for three reasons

1. There is heightened emphasis on palliative and EOL care, in part, because of Institute of Medicine’s report last year, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life¹. In it, experts on death and dying made bold recommendations about how hospitals and healthcare professionals should address palliative and EOL care.

2. Officials from the federal Centers for Medicare & Medicaid Services, Baltimore, said, in July, it would pay physicians to conduct EOL counseling and start a pilot project to pay for hospice care and treatment instead of one or the other. At the end of the four-year project, CMS will evaluate whether it’s better to continue the current form of reimbursement or pay for both.

In this new program, 150,000 dying patients on Medicare will be allowed to choose hospice care to manage pain and suffering, get EOL counseling and medical treatments – including hospitalization – to help them battle illnesses, according to The New York Times². Research shows that patients, who get palliative care and traditional medical care, have better quality of life and less intense medical care, resulting in lower costs, the newspaper reported.

It’s likely that CMS officials know that providing appropriate care for dying Medicare patients could control some of the steep EOL costs when the healthcare system does what it normally does: provide heroic measures to keep patients alive whether they want or need that.

In a study published in Health Affairs³, researchers at the Brookdale Department of Geriatrics and Palliative Medicine at Mount Sinai, New York, showed considerable savings when patients with terminal illness are enrolled early in palliative and EOL care programs.

If 1,000 Medicare beneficiaries are enrolled in hospice within 15 to 30 days before death, CMS could save more than $6.4 million and those patients would be spared 4,100 hospital days. If 1,000 dying Medicare patients enrolled in hospice within 53 to 105 days before death, the savings would be more than $2.5 million, adds the study.

3. Brittany Maynard put the importance of end of life care into the news last year. The 29-year-old newly married teacher and resident of California became interested in assisted suicide after her diagnosis with terminal brain cancer in 2013. Under California law, this option wasn’t available. So, she and her husband rented a home in Oregon, which allows assisted suicide. A year later, at least 13 states are pursuing what is called “death with dignity” legislation. Oregon, only Montana, New Mexico, Vermont, and Washington State currently have such laws.

Given these significant developments, it may be more important than ever for healthcare professionals to ask what patients want in terms of palliative and EOL care. When we fail to ask, we are, by definition, no longer providing patient-centered care. Instead, we’re doing what the healthcare system has always done: provide lots of care whether it meets patient needs or not and wasting precious resources in the process.

Fixing this problem shouldn’t be that difficult. We simply need to make sure we’re delivering patient-centered care. To do that, we need to ensure the patient and family are fully engaged in care delivery. But, as we have seen in the past, members of the care team may not be prepared to talk about death and dying. After all, most went to school to learn to care for the living and keep them alive.

Has the care team talked with the patient about what he or she wants? If there was such a conversation, was the family included? Did the care team discuss what the patient wants without the patient being present?

The patient-engagement step is easy to overlook. Healthcare providers, not trained to talk about death and dying, don’t know how to do it; or believe it’s someone else’s job. So, the first step is to ensure that someone lets the hospital or health system know what the patient wants. In many facilities, this falls to the case manager or social worker who ensures the patient gets what he or she needs from the health system.

James McGregor, MD, an expert in palliative and end of life care and senior medical director for Sutter Health, Sacramento, Calif., says, “Addressing the full spectrum of psychosocial, emotional, physical and spiritual needs helps to raise patient and family satisfaction and prolong life. Patients and family members often have questions about palliative and EOL care and need someone to answer them.”

Those who work in palliative and EOL know the value of engaging patients and their families to guide them through these difficult times, explaining an illness and planning. And, they are likely to create a more sustainable healthcare system.

Complete Article HERE!

December 7, 2015December 7, 2015

Holidays a time to talk plainly about end-of-life care wishes

By Mary Thelen

Let’s talk turkey. And, no, I don’t mean gobbling like that festive holiday bird. I mean use the holidays, when family members are gathered, to go beyond the “How ’bout them Packers?” discussion. Use that precious time to speak honestly and openly about your end-of-life wishes. For example:

– Would I want a feeding tube?

– Would I want to be put on a breathing machine?

– Would I want CPR if my heart or breathing stops?

– What would be important to me if my days were numbered?

“Depressing,” some people groan. “I’ll make those big decisions when the time comes.” It’s human to want to put off thoughts of death and dying. Unfortunately, a health care crisis can happen at any time, at any age. When the unthinkable strikes – a debilitating illness, a devastating accident – families who haven’t had these discussions often are left agonizing over “what would my loved one want?”

So, turn down the volume on the game, and tell your family you want to “talk turkey,” a phrase to describe serious conversation. Give yourself and your loved ones the gift of preparation:

– Talk about your wishes with those close to you.

– Seek guidance, if desired, from your religious leader.

– Fill out an advance directive to make your wishes known.

WHAT IS AN ADVANCE DIRECTIVE?

An advance directive is a legal form that tells your doctors what kind care you want if you are too ill to express yourself. One type of advance directive, Power of Attorney for Health Care, is preferred because it makes your care wishes known and also designates a person to make decisions for you if you are unable to speak for yourself.

WHERE DO I FIND A POWER OF ATTORNEY FOR HEALTH CARE FORM?

Power of Attorney Health Care is a free form, and you don’t need an attorney to fill it out. It’s readily available at your local library or online.

HOW DO I FILL OUT THE FORM?

If you don’t know where to get started, don’t worry. There are plenty of resources to help you. If you find the language intimidating, don’t be afraid to ask for help from:

– Your local hospital. Spiritual care, palliative care, social services and hospice workers all can help you.

– Your county’s Aging and Disability Resource Center.

WHEN DOES AN ADVANCE DIRECTIVE GET USED?

These forms relate to end-of-life wishes. Personal care preferences are put in motion when doctors believe a patient will not recover and the person isn’t able to express his wishes at the time.

A Power of Attorney for Health Care form gives a designated decision maker the right to make decisions. Without the form, even a spouse may need to attain legal guardianship to make health care decisions for a loved one. Going through the legal system adds time and money to an already stressful situation.

IT CREEPS ME OUT, BUT …

Tell your family: “I know this is hard to discuss.” Emphasize why it’s important: “I want to make it easier on you during a medical crisis.”

Better yet, depending on their ages, have your kids and grandkids complete an advance directive too. Anyone 18 and older needs an advance directive.

So, pass the gravy and the Power of Attorney for Health Care form.

Don’t forget the turkey. Talking about what’s important at the end of life is one of the most meaningful gifts we can give each other.

Complete Article HERE!

December 4, 2015

What working in a nursing home taught me about life, death, and America’s cultural values

by Valery Hazanov

The first thing I noticed when I began working in a nursing home was the smell. It’s everywhere. A mix of detergent and hospital smell and, well, people in nursing homes wear diapers. It’s one of those smells that takes over everything — if you’re not used to it, it’s hard to think about anything else.

Being in the nursing home is tough. People weep and smell and drool. Sometimes you can go on the floor and hear a woman in her 90s scream, “I want Mommy.”

But it’s also ordinary — just people living together: gossiping, daydreaming, reading, watching TV, scratching their back when it itches.

People at the nursing home like to watch TV. It’s always on. How strange, then, that there are no old people on TV.

For the past eight months I have been working as a psychotherapist with dying patients in nursing homes in New York City. It’s an unusual job for a psychotherapist — and the first one I took after graduating with a PhD in clinical psychology. My colleagues were surprised. “Why not a hospital? Or an outpatient clinic? Do the patients even have a psychiatric diagnosis?”

The short answer is that I wanted to see what death looks and feels like — to learn from it. I hope that I can also help someone feel a little less lonely, a little more (is there a measure to it?) reconciled.

I haven’t gotten used to the smell yet. But I have been thinking a lot about the nursing home and the people who live and die there, and wanted to share what I learned.

1) At the end, only the important things remain

“This is all I have left,” a patient recently told me, pointing to a photograph of himself and his wife.

It made me notice the things people bring to the nursing home. The rooms are usually small, so what people bring is important to them. If they have a family, there will be photos of them (most popular are the photos of grandchildren). There might also be a few cherished books, a get-well-soon card, a painting by a grandchild or a nephew, some clothes, maybe flowers. And that’s about it. The world shrinks in the nursing home, and only a few things remain: things that feel important — like they’re worth fighting for, while we still can.

2) Having a routine is key to happiness

‘m a little lazy. My ideal vacation is doing nothing, maybe on a deserted beach somewhere. I look in terror upon very scheduled, very planned people. Yet I have been noticing that doing nothing rarely fills me with joy, while doing something sometimes does. Hence, the conflict: Should I push myself to do things, or should I go with the flow and do things only when I feel like doing them? Being in a nursing home changed my perspective somewhat: I noticed that all the patients who do well follow a routine. Their routines are different but always involve some structure and internal discipline.

I am working with a 94-year-old woman. She wakes up at 6:30 am every day, makes her bed, goes for a stroll with a walker, eats breakfast, exercises in the “rehabilitation room,” reads, eats lunch, naps, goes for another walk, drinks tea with a friend, eats dinner, and goes to bed. She has a well-defined routine. She pushes herself to do things, some of which are very difficult for her, without asking herself why it is important to do them. And, I think, this is what keeps her alive — her movement, her pushing, is her life.

Observing her, I have been coming to the conclusion that it might be true for all of us. And I often think about her when I am debating whether to go for a run or not, whether to write for a couple more hours or not, whether to finally get up from the couch and clean my apartment or not — she would do it, I know, so maybe I should, too.

3) Old people have the same range of emotions as everyone else

“You are so handsome. Are you married?” is something I hear only in extended-family gatherings and in nursing homes. People flirt with me there all the time. This has nothing to do with their age or health — but rather with whether they are shy. When we see someone who is in his 90s and is all bent and wrinkled and sits in a wheelchair, we might think he doesn’t feel anything except physical pain — especially not any sexual urges. That’s not true.

As long as people live, they feel everything. They feel lust and regret and sadness and joy. And denying that, because of our own discomfort, is one of the worst things we can do to old people.

Patients in nursing home gossip (“Did you know that this nurse is married to the social worker?”), flirt, make jokes, cry, feel helpless, complain of boredom. “What does someone in her 80s talk about?” a colleague asked me. “About the same things,” I replied, “only with more urgency.”

Some people don’t get that, and talk to old people as if they were children. “How are we today, Mr. Goldstein?” I heard someone ask in a high-pitched voice of a former history professor in his 80s, and then without waiting for a response added, “Did we poopie this morning?” Yes, we did poopie this morning. But we also remembered a funny story from last night and thought about death and about our grandchildren and about whether we could sleep with you because your neck looks nice.

4) Old people are invisible in American culture

People at the nursing home like to watch TV. It’s always on. How strange, then, that there are no old people on TV.

Here’s a picture I see every day: It’s the middle of the day and there is a cooking show or a talk show on, and the host is in her 50s, let’s say, but obviously looks much younger, and her guest is in his 30s or 50s and also looks younger, and they talk in this hyper-enthusiastic voice about how “great!” their dish or their new movie is, or how “sad!” the story they just heard was. Watching them is a room full of pensive people in their 80s and 90s who are not quite sure what all the fuss is about. They don’t see themselves there. They don’t belong there.

I live in Brooklyn, and I rarely see old people around. I rarely see them in Manhattan, either. When I entered the nursing home for the first time I remember thinking that it feels like a prison or a psychiatric institution: full of people who are outside of society, rarely seen on the street. In other cultures, old people are esteemed and valued, and you see them around. In this manic, death-denying culture we live in, there seems to be little place for a melancholic outlook from someone that doesn’t look “young!” and “great!” but might know something about life that we don’t.

There isn’t one Big Truth about life that the patients in the nursing home told me that I can report back; it’s a certain perspective, a combination of all the small things. Things like this, which a patient in her 80s told me while we were looking outside: “Valery, one day you will be my age, God willing, and you will sit here, where I sit now, and you will look out of the window, as I do now. And you want to do that without regret and envy; you want to just look out at the world outside and be okay with not being a part of it anymore.”

5) The only distraction from pain is spiritual

Some people in the nursing home talk about their physical pain all the time; others don’t. They talk about other things instead, and it’s rarely a sign of whether they are in pain or not.

Here’s my theory: If for most of your life you are concerned with the mundane (which, think about it, always involves personal comfort) then when you get old and feel a lot of pain, that’s going to be the only thing you’re going to think about. It’s like a muscle — you developed the mundane muscle and not the other one.

The saddest people I see in the nursing home are childless

And you can’t start developing the spiritual muscle when you’re old. If you didn’t reallycare about anything outside of yourself (like books, or sports, or your brother, or what is a moral life), you’re not going to start when you’re old and in terrible pain. Your terrible pain will be the only thing on your mind.

But if you have developed the spiritual muscle — not me, not my immediate comfort — you’ll be fine; it will work. I have a couple of patients in their 90s who really care about baseball — they worried whether the Mets were going to make the playoffs this year, so they rarely talked about anything else; or a patient who is concerned about the future of the Jewish diaspora and talks about it most of our sessions; or a patient who was worried that not going to a Thanksgiving dinner because of her anxieties about her “inappropriately old” appearance was actually a selfish act that was not fair to her sister. Concerns like these make physical pain more bearable, maybe because they make it less important.

6) If you don’t have kids, getting old is tough

The decision to have kids is personal, and consists of so many factors: financial, medical, moral, and so on. There are no rights or wrongs here, obviously. But when we are really old and drooling and wearing a diaper, and it’s physically unpleasant to look at our wounds or to smell us, the only people who might be there consistently, when we need them, are going to be either paid to do so (which is okay but not ideal) or our children. A dedicated nephew might come from time to time. An old friend will visit.

But chances are that our siblings will be very old by then, and our parents will be dead, which leaves only children to be there when we need it. Think about it when you are considering whether to have children. The saddest people I see in the nursing home are childless.

7) Think about how you want to die

José Arcadio Buendía in One Hundred Years of Solitude dies under a tree in his own backyard. That’s a pretty great death.

People die in different ways in the nursing home. Some with regrets; others in peace. Some cling to the last drops of life; others give way. Some planned their deaths and prepared for them — making their deaths meaningful, not random. A woman in her 90s recently told me, “Trees die standing tall.” This is how she wants to go: standing, not crawling.

I think of death as a tour guide to my life — “Look here; pay attention to this!” the guide tells me. Maybe not the most cheerful one, slightly overweight and irritated, but certainly one who knows a lot and can point to the important things while avoiding the popular, touristy stuff. He can tell me that if I want to die under a tree in my backyard, for example, it might make sense to live in a house with a backyard and a tree. To you, he will say that if you don’t want any extra procedures done to you at the end, it might make sense to talk about it with the people who will eventually make this decision. That if you want to die while hang-gliding over an ocean, then, who knows, maybe that’s also possible.

I think of death as a tour guide to my life — “Look here; pay attention to this!”

My father, who has spent the past 30 years working in an ICU as a cardiologist and has seen many deaths, once told me that if he had to choose, he would choose dying well over living well — the misery of a terrible, regretful death feels worse to him than a misery of a terrible life, but a peaceful death feels like the ultimate reward. I think I am beginning to see his point.

I am 33. Sometimes it feels like a lot — close to the end; sometimes, it doesn’t. Depends on the day, I guess. And like all of us, including the people in the nursing home, I am figuring things out, trying to do my best with the time I have. To not waste it.

Recently, I had a session with a woman in her 90s who has not been feeling well.

“It’s going in a very clear direction,” she told me. “Toward the end.”

“It’s true for all of us,” I replied.

“No, sweetheart. There is a big difference: You have much more time.”

Complete Article HERE!

December 1, 2015December 1, 2015

How to get what we need at the end of life

By Diane E. Meier

MY PATIENT – I’ll call her Mrs. Stein — had been crystal clear for the 12 years I took care of her. “I never want to end up in a nursing home — make sure you help me stay in my own home. I want to die in my own bed!”

A few years later, she had a stroke and her only option was a nursing home. She didn’t have enough money to pay out of pocket for 24-hour personal care at home, and neither Medicare nor Medicaid would cover it. Angry and depressed, she left for a neighborhood nursing home, where she lived another five years. I knew her wishes, but our society provided no means of honoring them.

In order to know what our patients prize most, we need to ask them, and then we must be able to act on what we learn. This requires three key elements.

First, we have to help clinicians and their patients get off the 10-minute office visit treadmill, by compensating providers for conducting meaningful conversations with patients about their priorities and treatment options. Recent government effort to provide payments to clinicians for having conversations about what matters most to our patients if they can no longer decide or care for themselves (referred to as advance care planning) is an important step in wrestling our health care system back to one that places patient needs and priorities first.

Second, these are not easy conversations to have. Clinicians are not born knowing how to have them, and just like our patients, we avoid discussions about uncomfortable topics. Meanwhile, talking about future medical priorities is not taught in medical schools. Until this kind of training is routine and universal, it does not matter whether or how much we pay for these conversations; clinicians will continue to avoid them. The good news is that a bill in Congress, the Palliative Care and Hospice Education and Training Act, addresses these issues.

But third, it is not enough to know what patients want. We must also be able to act on those wishes by covering the care and support people need in order to remain as independent as possible in their own homes. While the Care Choices Act represents some progress, as it allows people to get hospice care at home focused on comfort and quality of life at the same time as continued disease treatment, it does not cover the personal care and support. But there is hope here, too — the Affordable Care Act creates new incentives for our health systems to help us avoid unnecessary, risky, and costly hospitalization, incentives that will drive greater willingness on the part of both public and private insurers to meet people’s needs in their own homes. That’s a lot cheaper than having people end up in hospitals and nursing homes. It is also what most of us — including Mrs. Stein — would want.

Dr. Diane E. Meier is a palliative medicine physician and director of the Center To Advance Palliative Care at the Icahn School of Medicine at Mount Sinai in New York City.

Complete Article HERE!

November 30, 2015November 30, 2015

Families urged to discuss end-of-life plans in A Good Death film

BY LINDA FORT

A Pangbourne GP has made a film about the experiences of a family dealing with the death of a loved-one to help others in the same situation

A tearful new film shows how one Berkshire daughter was able to ensure her mother could die at home and with minimum pain.

The film is called A Good Death and features a daughter Judy speaking of the death of her mother Molly who lived for many years in Pangbourne and died in June in her own home.

Health service commissioners in Berkshire West are now asking families to ask their loved ones about their wishes and not to be afraid to discuss end-of-life plans with their doctor.

Pangbourne GP and Thames Valley Strategic Clinical Network End of Life lead Dr Barbara Barrie said: “Our job isn’t just about health and survival.

“This new film is a great example of what can be achieved through good end-of-life care.”

What is your view on end-of-life plans? Tell us in the comments section below.

Factors most important to people at the end of their life often include having pain and other symptoms managed effectively, being surrounded by loved ones and being treated with dignity.

Dying in a preferred place is important too. In a recent survey only three per cent of respondents said that they wanted to die in hospital yet, nationally, 52 per cent of deaths among those between 75 and 84 take place in hospital.

Dr Barrie said: “The proportion of people dying at home or in care homes continues to increase, but there’s more to be done.

“Early conversations with patients and their carers is vital.”

Local health commissioners are working to ensure patients’ wishes are respected.

Electronic palliative care record

Alongside encouraging early discussions, doctors in the area are using an ‘electronic palliative care record’.

This means that vital information about carer’s details, patient’s wishes on resuscitation and preferred location for death is available to every professional caring for someone at the end of their life.

The new film, available on YouTube, tells the story of Molly and the care team that surrounded her towards the end of her life.

Dr Barrie said: “Molly got to die at home, her dignity preserved and with no unnecessary medical interventions. All families in Berkshire should expect the same level and quality of care shown in this film.”

Complete Article HERE!

November 29, 2015November 29, 2015

Circle of Friends buys a residence for those at the end of life

“People close to dying often speak in metaphor and say they are going ‘home.’ Home is no longer a place, but a passage. Death then, becomes the vehicle in which we make safe passage.” These lines come from a dissertation entitled “Dreaming Out Loud: Initiating Plans for a Community-based Home for the Dying,” written by oncology social worker Elise Lark, who has been working to make this dream a reality in the Mid-Hudson Valley.

Lark is the founder of Circle of Friends for the Dying (CFD), a non-profit group that has purchased a Kingston house they plan to convert into a residence available to people needing compassionate care at the end of life. Instead of spending their final weeks or days in the isolating atmosphere of a hospital, the dying will be able to make their transition in the comfort of a home, attended by family, friends, and volunteer caregivers.

“In order to have a good death,” said CFD board member Gai Galitzine, “you need to be living while you’re dying.”

A century ago, observed Lark, who works at the Oncology Support Program at HealthAlliance in Kingston, death was part of everyday life. “People died in community. It was a social, not a medical event. In the 1950s, people started to die more often in the hospital, which is considered the best setting — a sterile environment, safe, convenient to doctors. But we believe people should die in a non-institutional setting, with a sense of everyday life, where they can enjoy the rituals of having meals together, sitting with a group of people, participating in life.”

The hospice movement has made strides in this direction, often bringing patients home from the hospital and providing support and education that allow the family to ease the dying over the divide. But a home death is not always possible. Often the patient needs round-the-clock care, which family members may not be able to provide if they live out-of-state, have to work, or are raising children. Some patients live alone. If home care isn’t an option, the only alternative in Ulster and Dutchess Counties is a nursing home.

The Home for the Dying in Kingston will be run by volunteers who will provide skilled care and companionship for people nearing death. If family members are available, they can spend time with their dying relative in a warm, relaxed atmosphere — at no charge.

Hospice agencies in some areas have established residences or hospital-based hospice units for the dying, but a study done in the Mid-Hudson Valley concluded that a structure dedicated to hospice was not feasible in our area. When Lark was working on her doctorate at Antioch University, she studied options for community-based care. She visited the closest hospice residence to her Kingston job, an eight-bed unit in Newburgh, but found it didn’t fit her vision for a modest, homely setting. Then she discovered the Home for the Dying model, which started with a Home in Rochester in 1984, organized by lay Carmelites. There are now 25 of these Homes in New York State. It turns out that a facility with more than two beds is considered an institution, subject to rules and regulations. The Home in Kingston will stick to two beds, so they’ll be free to provide the most appropriate care.

Community-based end-of-life care is a boon to volunteers as well as to the dying and their families. “I had deaths in my family where I wasn’t able to be there, and it stayed with me,” said Galitzine. “I had a good experience with my mother where I was able to get to her in time even though she’d had a stroke. The reassurance she felt when I was there was one of the most beautiful things. I could see it in her eyes, although she couldn’t speak. I love the idea of being able to help other people in that situation.”

“Death is not an emergency,” Lark pointed out. “It happens every day. It’s as normal as birth. Some people won’t like this idea, but I see death as a sacred rite of passage. To be present to that is an amazing experience, a gift.”

One study shows that 80 to 90 percent of Americans say they prefer to die at home — but only 25 percent actually get to do it. Hospice is offered when patients are told they have six months left to live, but most people only take advantage of hospice services for the last few days of life, when life support measures are abandoned, and palliative care takes over, doing everything possible to relieve pain and make the patient comfortable. Hospice shifts the focus from preserving life at all costs to enhancing quality of life. But the reluctance of doctors and family members to address the prospect of death is an impediment to getting end-of-life care in a timely manner.

“Medical culture operates on a culture of hope,” said Lark. “You can’t hold hope in one hand and the fact that people are nearing the end of life in the other hand. Doctors are not trained to have end-of-life discussions. People get on hospice late, so they don’t get to reap the benefits of hospice, which provides support to the caregiver. Unless we can have these conversations with our loved ones, we’ll keep prolonging the dying process.”

CFD has joined the international Death Café movement, organizing monthly informal gatherings in which people sit in small groups to talk about the subject most of us tend to avoid — how our lives will end. Death Cafés in the Woodstock area are run by psychotherapist Laurie Schwartz and social worker Barbara Sarah, founder of the Oncology Support Program at HealthAlliance. For people who are fearing death, grieving for relatives, or wondering about the mystery of end-of-life passage, the conversations provide a forum for sharing often unspoken thoughts and worries. The underlying purpose, said Galitzine, “is to create a culture where death is part of everyday life, to bring the act of dying back into people’s lives, so they won’t fear it and will talk about it.”

The Home for the Dying in Kingston will be available to people with three months or less to live. In addition to two bedrooms for patients, equipped with hospital beds for comfort, there will be a wing with quarters for family members who wish to stay overnight. Meals can be prepared in a full eat-in kitchen. A wraparound deck and garden will be accessible by wheelchair from the client bedrooms, which will have sliding doors to the outside.

Presently CFD volunteers are cleaning and refurbishing the house to rent it out for a year while the organization raises money for renovations. A capital campaign will begin in the spring, with plans to have the home in operation in 2017.

“There will be no white uniforms,” said Lark. “No one is confined to their room. They can use the whole house as if it were their own house. A good place to die is also a good place to live.”

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