05/24/17

When my dad was dying, we forgot to ask him how he wanted to live

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Professionals arrived to do the job they were sent to do – take bloods, give drugs, request a hospital bed at home. They didn’t take the time to understand that what Dad wanted most was to be outside, to feel the sun, wind and rain on his face

By Sarah Dew

When it comes to end of life care, we talk about dying. But in my experience, care at the end of life should not be not about death – it should be about life.

My Dad was a man full of wonder for the world. He loved nothing more than being outside, on a mountain bike or with a camera in his hand. He preferred to have a few, meaningful and close friendships than a wide group of acquaintances. He didn’t like lie-ins, or mayonnaise. He had blue eyes, and a particularly aggressive form of colon cancer that killed him within three and a half months of diagnosis, aged 57.

Cancer car-crashed its way into all of our lives, and following in its wake were a merry-band of professionals ostensibly there to care for him. The arrival of new people at our doorstep was relentless. Suddenly, my father, a man who invested deeply in knowing and understanding people, was surrounded by people who didn’t know him at all. This was clear from the first of many district nurse visits to our home. The nurse didn’t know how recently and rudely cancer had come into our lives. “I guess you’ve been fighting this for a good while,” she said. She talked about her grandson’s visit the weekend before. She didn’t know how much Dad wanted to have grandchildren.

Professionals arrived to do the job they were sent to do – take bloods, give drugs, request a hospital bed at home. They didn’t take the time to understand that what Dad wanted most was to be outside, to feel the sun, wind and rain on his face. They told us they’d visit sometime the next day. And so we waited. And Dad lost another precious opportunity to be out in the world he didn’t want to leave.

Suddenly, my strong, capable, energetic family were paralysed in a system that we didn’t understand, and that didn’t understand us. We had to wait for information, to fire fight the latest deterioration, and desperately live out the time we had left once the calls and the visits were done.

After my Dad died, I began to work on a programme to improve end of life care in South London. When it comes to improving end of life care, calls are repeatedly made for more palliative care services, for better access to pain control, for better planning. All of these help – no-one should die in pain, in a place they did not choose, and without the support they need.

But the end of life is not just about dying. It is about living well, right up until the end. And throwing more professionals at “the problem” of dying will not enable us to die well (nor do we have the resources to do so). We must start with what it means to live well – for my Dad, to be outside, with the people he loved to share his life with, reflecting on the wonder of a life well lived and the pain of a life lost too soon.

None of this is expensive to provide. But it requires fundamentally reframing what we understand care at the end of life to be.

Caring for people at the end of life means enabling people to live out their final days as they wish, helping them to reflect on the life that they’ve lived, and supporting them with the emotional and physical challenges that dying forces us to confront. Determining what this care looks like for each individual, and how it is provided, need not be led exclusively by professionals. In fact, it can and should be a partnership with our families, friends and neighbours.

As the power of medicine to extend and protect life advances year on year, we’ve handed responsibility for guarding against death to medical professionals. So too have we asked these professionals to “own” dying – to set the agenda about what end of life care looks and feels like, to lead the planning and choices we make, to initiate conversations, and even to make judgements about the best course of action. This expectation is unfair on those professionals, on those that are dying, and those that love them. Death is not simply a medical phenomenon – it is a social and emotional one, and that balance should be reflected in how we collectively set the agenda for what shape end of life care takes.

An army of professionals cannot meet all the needs of the dying and the bereaved. Professionals must share their knowledge with the loved ones that want to care, and we must all be courageous and upskilled in supporting our friends, families and neighbours, in death as in life. Our society and our health service must recognise the role we can, and must, all play in supporting people that are dying to live well, right until the end.

Complete Article HERE!

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05/23/17

‘Living well is a daily choice, dying well takes planning’

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by Liz Walsh

PHIL is lying in his hospice bed. There are tubes in his nose, delivering oxygen to his lungs.

He is attached to a monitoring machine, a beloved rug covering his now-frail body.

It is hard for him to lift his head from his pillow. Aged in his 60s, he is dying of cancer.

His life is no longer measured in milestones. Or years lived. Or career achievements. His life is now measured in days.

 

But his hospital room – inside the 16-bed Mary Potter Hospice in North Adelaide – is not filled with the gloom of impending death, but rather a celebration of life. Because every day, every hour, Phil is still living.

This is palliative care: where life and death swirl around each other in a strange and powerful dance.

But while death has always been a part of the human experience, palliative care – specialist care for the dying – is a relatively new concept.

Palliative care began in the United Kingdom as part of the hospice movement in the 1960s and is now widely used outside of traditional hospices, offered also in hospitals, nursing homes and private houses.

As Palliative Care SA explains of its purpose: “Living well is a daily choice, dying well takes planning”.

Before Phil dies, he has one wish: to walk his daughter, Sophie, down the aisle as she weds the love of her life. Sophie’s wedding is months away, Phil doesn’t have that time.

In steps the Mary Potter Foundation, the fundraising charitable arm of the hospice.

It is the job of the foundation’s executive director, Cathy Murphy, and her team to fulfil wishes, make memories, create calm and fill the hospice with life-affirming experiences. Murphy has been in her role for eight years.

Eight years.

Eight years surrounded by death: that scary unknown that eventually comes looking for us all. But working so close to death, for Murphy, is not scary; instead she describes it as a privilege.

“The human spirit is a wonderful thing and dying people can teach you so much about what’s important,” she says. “We have people from all walks of life in here and the person with nothing and the person with so-called-everything become the same person when they’re lying in a hospice bed and their life is being measured in months, weeks or days … it’s a great reminder that today is today.”

According to the World Health Organisation, palliative care improves the quality of life of patients and their families who are facing life-threatening illness. It combines the prevention and relief of pain with the treatment of other physical, psychosocial and spiritual issues.

In the 4th century, hospices were places of rest for travellers, but in the 19th century, a religious order established hospices for the dying in Ireland and London. The modern hospice concept originated and gained momentum in England after the founding of St Christopher’s Hospice in 1967. It was founded by Dame Cicely Saunders, widely regarded as the founder of the modern hospice movement.

Patient and Family Councillor Sigourney Reschke

That movement today sees hospices like Mary Potter, which was established in 1976, concern themselves with the task of giving the dying the best days of their lives.

Murphy explains: “It’s not about changing the outcome, it’s about changing the experience.”

She says many express a desire to die at home, but for various reasons – for example, complex medical needs, or inadequate support at home – it is not always possible. And that’s when a hospice becomes vital.

Mary Potter Hospice concerns itself not only with the physical wellbeing of patients – and its medical staff work hard to ensure a patient’s pain medication is sufficient – but it offers a range of therapies including music and art therapy. It has a team of volunteers who record and write a patient’s biography. Each room has access to the outdoors. It caters for special pet visits.

It sounds lovely, but we don’t talk about it. In fact, Palliative Care SA is concerned that people do not discuss death and consider palliative care soon enough because of a misconception it is something to be fearful of.

“We completely understand people might imagine that by considering palliative care hope is dashed,” the organisation states. “But the reality is palliative care is about ‘living’ and focuses on providing people with emotional and spiritual support, pain relief and comfort care enabling them and their family to be empowered to make the most of time remaining.”

So, the organisation hopes that Palliative Care Week – which starts tomorrow and runs until May 28 – will provoke discussion about what it is to have a good death.

I n a society that values its youth and celebrates those who defy their age, is a good death something we strive for? Sigourney Reschke is the manager of patient and family counselling at Mary Potter. She says that the hospice works in conjunction with the hundreds of dying patients it sees each year, to bring about a good death, which is different for each person.

“(A good death) might be to be surrounded by people who you love in a comfortable, warm, safe environment, where you have the opportunity to say the things you need to say, to say goodbye … but that’s not the same for everybody,” she says.

“What we try to do is make those wishes come true for whatever that person and their family hopes to achieve in their time with us.”

Murphy explains that the foundation aims to raise more than $1.2 million annually so that it can help give people the good death they deserve. They receive no government funding and rely on donors.

Staff at the Mary Potter Hospice: registered nurse Luke Peeters, Patient and Family Councillor Sigourney Reschke and Executive Director of the Mary Potter Foundation Cathy Murphy.

“Our aim, when a patient comes in, is to give them the best day possible,” she says. “What is the best day when you know your time is quite finite? It could be a drive to the beach to have a cup of coffee because that’s something you’ve always done. It could be a date night in the hospice with someone you love.”

It could be like Phil: walking his daughter down the aisle. In Phil’s case, the hospice and foundation were able to organise a wedding – from the photographer to the flowers to the champagne to the guest list – in four days.

The commitment ceremony was held in the multi-faith chapel and the medical team worked with the father so that he was strong enough to get out of bed and walk his daughter down a makeshift aisle.

Phil isn’t alone. Patient after patient experiences their best day for as long as they can in the hospice environment.

Murphy talks about an 18-year-old girl who spent her final days at the hospice who wanted to go shopping and so the foundation organised for a local dress shop to bring in racks of clothes for her to try on; then there was the younger couple who wanted to celebrate Valentine’s Day in the way they did each year and so the foundation organised the specific pate, crackers, bubbles and flowers that were their Valentine’s Day tradition.

There was the man who was allowed one last visit to his favourite pub for a final round of beer with his friends. The man who had not seen his family for years, who was reunited in his final days.

Reschke says people are often surprised what they find when they visit Mary Potter.

“People don’t expect to come here where it’s light and there’s a lot of laughter and a huge amount of life and people smile,” she says.

“We laugh a lot, we love a lot. It’s sad, but we have a lot of fun, too.”

Across Australia there are 190 palliative medicine specialists, and in South Australia the Mary Potter Hospice is a key public and private provider of palliative care services, that – given the ageing population – will only increase in demand.

But, as a society, we’re not keen on talking about death. Reschke says: “Death is still a taboo subject and one that is hard to talk about and be open about because it’s scary and we don’t know what happens, we don’t know what that looks like or feels like, it’s a topic that is still hard to talk about.”

So, the role of palliative care is to demystify death, to take away the fear of facing it. “We are a resilient race in terms of being able to face what is happening,” Murphy says. “Not everybody can reach acceptance, but the aim here is to help people find peace.”

Palliative care is a very specific branch of medicine that many in the medical profession argue is becoming more important, especially as society debates the merits of voluntary euthanasia. And that’s a fair point: if palliative care works, why do we need a debate about euthanasia?

Former director of palliative care at the Royal Adelaide Hospital, Dr Mary Brooksbank, has written extensively on this very conundrum and muses: “I’ve watched many people die peaceful deaths which could easily have been traumatic and painful, including my father. I can understand why people want to alleviate suffering at the end of life and why they think voluntary euthanasia might be a compassionate way of achieving that. But with good palliative care, no one dying an expected death needs to die in extreme, agonising pain.

“I believe it is inappropriate to be having a debate in our society about euthanasia until every single health professional knows how to relieve pain and address suffering properly.”

Brooksbank argues that while Australia has a specialist stream of very competent palliative care professionals, the workforce can’t meet the needs of the entire population.

“A lot of work is being done to upskill doctors and nurses, and increasingly they are delivering top-quality care.

“The reality is though, particularly with our ageing population, that the whole palliative care sector is desperately under-resourced.”

Dr Charlotte Griffiths has dual training in both medical oncology and palliative care and works between the oncology ward at Calvary Hospital and the Mary Potter Hospice.

“As challenging as it is, it is work that I find rewarding and I feel I am making a difference to people,” she says.

“I’m able to manage people through what can be the most vulnerable and difficult time of their life and trying to make that a little bit easier along with supporting their family.

Dr Charlotte Griffiths at the Mary Potter Hospice

“Every single patient you treat leaves some kind of lasting impression and it teaches you how fragile life is, how important it is to make the best of every day.”

Just like Dr Griffiths, Luke Peeters works between the oncology unit at Calvary and the Mary Potter Hospice.

Aged just 25, the palliative care nurse has a greater appreciation for death than most of his generation’s youth. He sees death almost daily, and it has had a positive effect on him.

“It has taught me that life can be taken away from you in a matter of months,” he says. “A lot of patients tell me: ‘Experience your life, give it a go, because you don’t know unless you try’.

“One patient I remember was young, she was 43, and I told her that I had always wanted to learn another language and she said: ‘Well, hurry up and do it’. So, I’ve started French.”

Following other patient advice, last year, Peeters travelled to Europe – his first overseas trip – and this year, he started playing the piano again after 10 years away from the instrument.

“You can get so focused on: ‘I need to get a degree, I need to get money, I need to buy a house, I need to buy a car’ and you don’t stop to think: ‘What do I actually want from life?’

“Working with people at the end stage of their life and the advice they have given me, I have taken that on board.”

But for all the life that pulsates inside the Mary Potter Hospice, there is no denying that death is there, too.

And the people who work there regularly shed tears with patients’ families and friends and, later, by themselves in the staff coffee room. Peeters says: “I was always told as a nurse, don’t get too attached to your patients because then you can’t do your job properly, but as an oncology and hospice nurse, you look after these patients, generally, for an extended period of time. You know their daughter’s name and how she’s going at university and you get to know all their friends as well. It’s like you’re a part of their community.

“It is hard when they pass.”

Including Phil.

It was a Thursday when Phil watched his daughter, Sophie, wed her husband-to-be in a love-filled commitment ceremony hosted by the Mary Potter Hospice in its on-site multi-faith chapel.

He died three days later.

And while, yes, tears flowed, so too did immense feelings of joy and love. At the end, in his hospice room, kindness and laughter prevailed.

And precious memories were created in the final days of a man’s life. A lovely, fitting death.

Complete Article HERE!

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05/20/17

Pathologist Carla Valentine Will Teach You How to Die Fearlessly

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“The people who think about mortality tend to have the highest happiness rate.”

By Sarah Sloat

Ambitious technocrats may predict a deathless future, but as the world stands now, we’re all going to die. This leaves us humans with the same two options we’ve had since we emerged from the evolutionary mire: Fear the final shuffling of our mortal coils, or embrace the inevitability that we’ll all be one with the dirt.

Fortunately, there are people out there who can help ease your mind about the whole “one day you’ll be dead” thing. One of those people is Carla Valentine, whose job as an anatomical pathologist, technical curator at Barts Pathology Museum, and author of The Chick and the Dead, has more than prepared her to come face to face with the inevitable end. In her book, which will be released in the United States in June, she weaves together corpse science and her intimate involvement with the “death industry” with the vital lesson about dying she’s learned over the years: Everyone wants to learn more about death whether they admit it to themselves or not, and accepting that education is the best preparation for their final days.

Valentine, whose book will be released in the United States in June, recently spoke to Inverse about the CSI effect, the future of “soul midwives,” and urban legends that just won’t go to the grave.

Carla Valentine.

>Why was now the right time to write this book?
There are two reasons, really. There is definitely more of a desire at the moment for people to speak about death and learn more about it. That’s been on an upward trajectory. That just happened to coincide with when I left my career as a full-time pathology technician and I began to work at the museum, which gave me more free time to actually start to write.

What do you think has driven that increased interest in talking about death and learning about it?
When I first studied forensic science, which was 15 years ago, there were barely any courses. Those courses began to increase with what we call the “CSI effect”. That’s an actual academic term now for the interest in death and autopsies that has emerged from the increase in books and TV shows on the topic.

I think another issue is just the cost of funerals, like many things, is rising. People want to be a bit more informed and demystify the process around death so that they can plan properly and just dispel a lot of the myths before the time comes. There have always been a lot of myths around autopsies and how we conduct them. I think people just want to know the truth and it’s a good time for it.

What do you think people gain when from learning about what happens to their body after they die?
Personally, I think that when people face this idea of their mortality, the reality of it, and the reality of what may happen to their family members, for example, they tend to live a better life. They tend to understand how quickly it can be taken away. They can appreciate their own mortality and their own health. That was always what I felt and that’s been backed up by psychological studies, as well, which I reference in the book. The people who think about mortality tend to have the highest happiness rate. I think it’s because it demystifies it. People say that you’re afraid of the unknown. Sometimes it’s better to face the reality of it. Then it’s not so scary anymore.

Fracture of a mandible at the Pathology Museum.

Do you get consistently the same sort of questions from people when they learn about your job?
I get consistently the same sort of questions and I get consistently told the same myths. Those absolutely drive me insane. I took as much opportunity as I could to answer all of the questions that I always get asked in the book. A lot of these myths have been doing the rounds since I was a child. For example, I was at the hairdresser’s yesterday, and the girl in the chair next to me overheard that we were talking about my job, and she said, “It’s true, isn’t it, that the fingernails grow and the hair grows after death?” I was like, “No it’s not like that.” I’ve heard the same things for 20 years.

What else do people get wrong about death?
People also think the deceased sit upright because of their gases, which is not true at all. Some deceased people are possibly in a state of rigor mortis, where they’ve passed away in a chair and so that means for a while they’ll still be in a bent-over position. They’ll look slightly like they’re sitting up when they’re on the slab. But they don’t sit up because of the gases. There are the odd groans or burps or farts. That is true.

The most annoying urban legend is the one where someone tells me, “A friend of mine knows someone who got a rash and when she went to the doctors she found out that it can only be caught from a corpse.” Basically insinuating that the guy that she’d had sex with or whatever has had sex with a corpse. That always drives me insane because there’s nothing on a deceased individual that isn’t on a live individual. We have the flora and fauna. There is no such thing as a parasite or a fungus that you can get from the dead.

It just goes to show how fascinated people are by those subjects. I’m doing my MA on the relationship between the sexualized gaze and anatomical displays. When I blog about sex and death and people go, “Really?” I think, look, you’re all interested in sex and death, just look at this one urban legend that’s nearly outlived me. Clearly, people are far more interested in sex and death than they’d like to let on.

A broken cervical spine.

What is it about that intersection that people keep on coming back to?
They’ve had similar periods in time where they’ve been sort of considered taboos. But the simple fact is sex is what begins our lives and death is what ends it. They’re two sides of the same coin. They’ve always been connected to each other psychoanalytically because everything you do, according to Freud, you do with either the death drive, the morbido, or a life drive, which is libido.

Inside Barts Pathology Museum.

Are there any new modern trends you’ve noticed, when it comes to what people want immediately before and after they die?
There are definitely newer trends towards much more environmentally friendly funerals. A lot of people are moving away from the traditional funeral, and opting for a green burial. That means that they wouldn’t be embalmed. Embalming was never as big over in the United Kingdom as it is in the U.S. anyway, but it’s still definitely dwindling. Natural burials where people are placed into wicker, cardboard coffins, or linen and buried into an actual burial ground. There’s definitely an increase in people who want that, while we never really would hear of that request a few years ago.

And then there’s death doulas and end of life doulas. They’re just like midwives, but for death. I met one the other night and he actually called himself a “soul midwife.” Death doulas are usually brought in when the person is in hospice. It can also be as soon as a person discovers that they’re terminally ill. In the same way that a midwife is there for the mother as she’s becoming dilated and then she delivers the baby, the doula helps the person through the process of death. It’s a similar process, I suppose, just the other way around.

Complete Article HERE!

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05/19/17

Do-Not-Hospitalize Orders Reduce Resident Transfers, Says New Study

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By Patrick Connole

A fresh look at how Do-Not-Hospitalize (DNH) orders affect the movement of skilled nursing care residents shows those residents with such directives experienced significantly fewer transfers to hospitals or emergency departments (EDs). Report authors said long term and post-acute care providers may see the information as evidence that considering DNH orders in end-of-life care plans could benefit residents and the nursing center in which they live.

“Residents with DNH orders had significantly fewer transfers. This suggests that residents’ end-of-life care decisions were respected and honored,” the authors said. “Efforts should be made to encourage nursing home residents to complete DNH orders to promote integration of the resident’s values and goals in guiding care provision toward the end of life.”

Results of the new study are in the May issue of The Journal of Post-Acute and Long-Term Care Medicine (JAMDA) in an article titled, “Are Hospital/ED Transfers Less Likely Among Nursing Home Residents with Do-Not-Hospitalize Orders?” JAMDA is the official journal of AMDA – The Society for Post-Acute and Long-Term Care Medicine.

The design of the study saw researchers examine Minimum Data Set 2.0 information from more than 43,000 New York state skilled nursing care residents. Of that number, 61 percent of residents had do-not-resuscitate orders, 12 percent had feeding restrictions, and 6 percent had DNH orders.

“Residents with DNH orders had significantly fewer hospital stays (3.0 percent vs 6.8 percent) and ED visits (2.8 percent vs 3.6 percent) in their last 90 days than those without DNH orders,” the report said. “Dementia residents with DNH orders had significantly fewer hospital stays (2.7 percent vs 6.3 percent) but not ED visits (2.8 percent vs 3.5 percent) than those without DNH orders.”

After adjusting for statistical variables, researchers said the results show that for residents without DNH orders, the odds of being transferred to a hospital was significantly higher than those with DNH orders.

One of the report’s authors, Taeko Nakashima, PhD, visiting assistant professor, State University of New York (SUNY) at Albany and adjunct assistant professor at Rutgers University, stresses that preparing DNH orders requires collaborative efforts and thorough discussion among the residents, health care proxy, and the attending physician about the goals of the resident and the resident’s prognosis and treatment options.

“Ethical end-of-life care in nursing homes must respect the resident’s autonomy and advance directive,” she says.

Complete Article HERE!

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05/17/17

Plan for your death; be wise like Wally was

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Linda Norlander is one of six reader columnists for The News Tribune.

We sat at the kitchen table with coffee and the forms. My father-in-law, Wally, had summoned me to help him fill out one of those “living will things.” We talked about what was important to him, now that he was in his 80s.

He was clear. “I’ve had a good life. I’ve never buried a child or a grandchild. When it’s time for me to go, I don’t want one of those young doctors trying to save me.” His main wish for health care at the end of his life was to be pain-free.

However, Wally’s gift to his family was not just the paper we filled out that day. His larger gift was the conversation he had many times with the family about his wishes.

When the time came that he was unable to speak for himself, and the doctors wanted to place a feeding tube to prolong his life, we were all on the same page. As my mother-in-law said, “Wally wouldn’t want that.”

With the support of hospice, he was able to say good-bye to his children and grandchildren and dispense a few words of wisdom. I remember that he advised our son with a chuckle, “You go to college. That’s good. But someday you need to get a job.” He died peacefully with all of us at the bedside.

When I meet people and tell them that I’ve worked in hospice and end-of-life care for many years, they often open up with their own stories. Unfortunately, too many of them do not end with, “I was able to carry out Mom’s wishes.” Instead, they are descriptions of having to make harrowing decisions for a loved one in the moment of crisis. I think about the son whose mother had a major stroke and was in a coma. He was told by the neurosurgeon that they would have to do surgery or she would die. What child wants to say, “No, let Mom die.”

They did the surgery and she died six weeks later, among the tubes and medical apparatus of an intensive care unit. To this day, he second-guesses whether he made the right decision. “Her last weeks of life were horrific.” When I’d asked him if he had ever talked with her about what she might want, he’d shrugged and said, “It never came up.”

We live in an era of incredible medical advances. We can replace kidneys, hearts, knees and hips. We have pacemakers, effective heart medications and all sorts of treatments for failing systems. What we usually don’t have are honest conversations about the treatments and what they might mean for the quality of life. To the son whose mother died in the intensive care unit, no one said, “If your mother survives she will likely be bedridden and comatose for the rest of her life.”

I am a proponent of doing four things regarding end-of-life care. First, sit down at the kitchen table with your family and have an honest conversation about what quality would mean for you if you weren’t able to speak for yourself. Second, name your health care power of attorney — the person who would speak for you — and give them your blessing that you will trust their decisions. Third, fill out an advance directive (the living will.) And fourth, do this now rather than waiting for a health care crisis.

I know, from years of working in the medical system, that in the moment when difficult decisions have to be made, very few doctors will seek out the health care directive document and say, “This is what your loved one wanted.” More likely, they will look at the family members and ask, “What do you want to do?”

In fact, when it came time to make decisions for Wally, we couldn’t find the health care directive. But the family knew what he wanted and we provided a united front regarding his wishes. Two weeks after he died, we finally found the form — in my mother-in-law’s underwear drawer. By then, though, Wally had already given us his gift.

Complete Article HERE!

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05/14/17

We’re Bad at Death. Can We Talk?

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A dialysis center in Paterson, N.J. Illnesses like renal failure often prove terminal, yet their uncertain progression can make it hard for patients and their families to start the conversation about palliative care and hospice.

By

Her last conversation should not have been with me.

I’d just arrived for the night shift in the I.C.U. when her breathing quickened. I didn’t know much about the patient, and the little I did know wasn’t good: She had cancer. Her lungs were filled with fluid. As her breathing deteriorated and her oxygen levels plunged, I searched the chart for her wishes in an emergency. Nothing.

I explained to her how rapidly her condition had worsened and asked if she’d discussed intubation and mechanical ventilation. She shook her head; she didn’t think it would get so bad so fast. Together we called her husband, who had just left for the evening, but there was no answer.

“If we do it, when will I…” she paused. “When will I wake up?”

I hesitated. It was as likely as not that she wouldn’t. I explained that we never leave patients intubated longer than necessary, but when people were as sick as she was it was impossible to know when — or even if — they would be extubated.

“O.K.,” she said. “Do it.”

There are, no doubt, differing opinions on what constitutes a good death. But this, inarguably, was not one.

For years the medical profession has largely fumbled the question of what we should do when there’s nothing more we can do. A new wave of research sheds light on what patients want at the end of life, and who is — or isn’t — getting it.

Despite growing recognition that more care isn’t necessarily better care, particularly at the end of life, many Americans still receive an enormous dose of medicine in their final days. On average, patients make 29 visits to the doctor’s office in their last six months.

In their last month alone, half of Medicare patients go to an emergency department, one-third are admitted to an I.C.U., and one-fifth will have surgery — even though 80 percent of patients say they hope to avoid hospitalization and intensive care at the end of life.

Medicare spending for patients in the last year of life is six times what it is for other patients, and accounts for a quarter of the total Medicare budget — a proportion that has remained essentially unchanged for the past three decades.

It’s not clear all that care improves how long or how well people live. Patients receiving aggressive medical care at the end of life don’t seem to live any longer, and some work suggests a less aggressive approach buys more time. Despite a popular misconception, doctors don’t die much differently: Physicians use hospice care and die in hospitals at rates similar to everyone else.

Two interventions have consistently been shown to help patients live their final days in accordance with their wishes: earlier conversations about their goals and greater use of palliative care services, which emphasize symptom control and greater psychological and spiritual well-being — and which recognize that longer survival is only part of what patients want.

Patients who engage in advance care planning are less likely to die in the hospital or to receive futile intensive care. Family members have fewer concerns and experience less emotional trauma if they have the opportunity to talk about their loved one’s wishes. And earlier access to palliative care has consistently been linked to fewer symptoms, less distress, better quality of life — and sometimes longer lives.

We’ve made significant progress in recent years: The availability of palliative care services has increased 150 percent over the past decade, and compared with patients in other developed countries, older Americans with cancer are now the least likely to die in a hospital (22 percent versus up to 51 percent). But not everyone has benefited from the palliative care movement: Large disparities remain by geography, race and type of illness.

Ninety percent of hospitals with more than 300 beds now have a palliative care program, but only 56 percent of smaller hospitals do. Patients treated at for-profit and public safety net hospitals (known for taking in those who have no insurance) are much less likely than those in nonprofit hospitals to have access to palliative care.

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05/12/17

Med schools to teach how to discuss patients’ goals for care — and for life

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How patients answer questions about overall life goals can inform treatment decisions, especially near the end of life.

By Felice J. Freyer

The four medical schools in Massachusetts have jointly agreed to teach students and residents how to talk with patients about what they want from life, so future doctors will know how far to go in keeping gravely ill patients alive.

How patients answer questions about their overall life goals can inform treatment decisions, especially as people near the end of life.

“We’ve trained all doctors to ask people, ‘Do you smoke?’” said Dr. Harris A. Berman, dean of the Tufts University School of Medicine, who met with colleagues last week from the medical schools at Tufts, Harvard, Boston University, and the University of Massachusetts. “We’ve trained people to ask about sexual preference. That used to be a difficult discussion to have.”

Now, Berman said, doctors need to learn how to ask even more deeply personal questions, such as: What most matters to you? What do you need to make life worth living? In what circumstances would you rather not be alive?

The medical schools’ plans to change their curriculums stem from the work of the Massachusetts Coalition for Serious Illness Care, a year-old consortium working to ensure that every resident receives the medical care they want — no more, no less. Dr. Atul Ga-wande, the surgeon and author who helped found the coalition, approached Berman about coordinating an effort among the medical schools.

Meanwhile, on Tuesday, the coalition will mark its first anniversary with the release of a survey of 346 adults who live in Massachusetts, conducted this year. Nearly all residents surveyed said it’s important to talk about their wishes for medical care if seriously ill or near the end of life, but 35 percent had not had that conversation with anyone.

When end-of-life conversations with a health care provider did take place, they were initiated by the patient two-thirds of the time. But three-quarters of those surveyed who said they had spoken with a health care provider about their wishes found that the talk was not difficult.

“People think having the conversation is scary,” said Maureen Bisognano, the coalition’s cochairwoman and senior fellow at the Institute for Healthcare Improvement. “What we’re finding is, when people actually do it, there’s a sense of relief, a sense of peace that you have expressed your wishes to someone.”

Doctors should have this conversation with patients, Berman said, when asking about their medical and family history, before they become ill. And the conversation needs to continue throughout life as circumstances and attitudes change.

Berman said that the schools’ academic deans will collaborate on the best way to incorporate this philosophy throughout medical school and residency training. It can’t be taught in a single class, he said. He expects the curriculum changes to be adopted within a year.

In collaborating on a curriculum change, the medical schools will be building on a successful effort in 2015 to add instruction about prescription painkillers and opioid addiction.

The Massachusetts Coalition for Serious Illness Care started last year, when Blue Cross Blue Shield of Massachusetts brought together leaders in end-of-life care and dozens of organizations concerned with health care and aging. It is funded with $200,000 a year from Blue Cross and the Rx Foundation, which works to improve the quality of hospital care.

With 58 members a year ago, the group has now grown to more than 70. Each organization commits to promoting the coalition’s goals: that all adults have designated a health care decision-maker and have spoken with that person about their wishes; that all clinicians are trained to discuss advance care planning and serious illness care; and that systems are in place to make sure patients’ wishes are documented and honored.

Many of the coalition members had already been working on those issues for years. But they say the coalition bolsters those efforts. “Having to talk about it, being held accountable to a group of our peers — that makes you want to achieve things and achieve them faster. . . . It’s also really a way to hold people’s feet to the fire,” said Anna Gosline, senior director of health policy and strategic initiatives at Blue Cross, which offers workshops in advance care planning for its employees.

Dr. Diane E. Meier, director of the Center to Advance Palliative Care in New York, has been watching the Massachusetts coalition and praised it as “the kind of social movement we need.” Meier, who received a MacArthur “genius” fellowship for promoting palliative care — medical care focused on relieving the stress and symptoms of serious illness — said the coalition is on the right track in focusing on what is valuable in life rather than planning for death.

“The public knows we can’t plan for end of life,” she said. “You can’t know what’s going to happen. Asking us to make decisions about an unknown future is irrational.”

Elaine Seidenberg learned how complicated such decisions can be when she moved into Orchard Cove, a housing community in Canton that offers elders an array of social and medical services.

Seidenberg thought she had everything in order. She had a folder for each of her two children with all the legal forms laying out her end-of-life wishes. But a woman from an Orchard Cove wellness program threw her for a loop when she asked, “What are your goals?”

Seidenberg realized that she had not provided enough information for her children. “Usually when you’re doing end-of-life planning . . . it revolves around things that you don’t want done to you,” she said. “I never really thought about what made my life worth living, what I would be willing to tolerate, and what I wouldn’t.”

After a lot of thought, she realized she most values “giving back to the community, being able to communicate freely and effectively with other people.”

Last year, for the coalition’s launch, Blue Cross commissioned a survey of 1,851 Massachusetts adults. It found that more than half had not named a representative to make health care decisions if they were incapacitated, often because they weren’t sick and didn’t think it was necessary.

This year, surveyors reached out to 860 people from the original survey, and 346 completed a follow-up. The survey was conducted in February and March by the research firm SSRS and the University of Massachusetts Medical School.

Among those who reported a loved one’s death in the past two years, only half rated the care received at end of life as excellent or very good, and a little more than half said their loved’s wishes were followed and honored.

Gawande said those responses represent a “very poor” showing for end-of-life care. When asked about other types of care, such as surgery or cancer care, nearly all patients rate their care as excellent or good, he said.

“This an ambitious agenda,” Gawande said of the coalition’s work. “It’s going to take years to move the needle.”

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