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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05/19/17

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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05/18/17

New nationwide study indicates patients are often prescribed potentially futile drugs in their final days

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Nearly half of older adults in Sweden take 10 or more medications in their last months of life, according to a new study reported in The American Journal of Medicine

Older adults often receive drugs of questionable benefit during their last months of life, according to the first study conducted on the burden of end-of-life medications across an entire population. The authors advocate for clinical guidelines to support physicians when they face the decision to continue or discontinue medications near the end of life. Their findings are published in The American Journal of Medicine.

The simultaneous use of multiple medications has become commonplace among older adults. In high-income countries, it has previously been estimated that 25% to 40% of people aged 65 years or older are prescribed at least five medications. This practice is known as “polypharmacy,” and can lead to drug-drug interactions and serious adverse effects.

In the context of end-of-life care, polypharmacy also raises important ethical questions about the potential futility of treatments close to death.

“People with life-limiting illness often receive medications whose benefit is unlikely to be achieved within their remaining lifespan,” writes lead author Lucas Morin, of the Aging Research Center at Karolinska Institutet in Stockholm, Sweden. “However, previous studies have been conducted in selected samples of individuals. Future research and clinical guidelines need to be informed by findings that are generalizable beyond a specific illness or care setting.”

The authors identified over half a million adults over 65 years of age who died in Sweden between 2007 and 2013, and reconstructed their drug prescription history for each of the last 12 months of life through the Swedish Prescribed Drug Register. The characteristics of study participants at time of death were assessed through record linkage with the National Patient Register, the Social Services Register, and the Swedish Education Register. Of note, over-the-counter drugs were not taken into account in this investigation.

The study resulted in two main findings:

First, the burden of medications increases as death approaches. The proportion of older adults exposed to at least ten different prescription drugs rose from 30% to 47% over the course of the last year before death. Older adults who died from cancer had the largest increase in the number of drugs. Individuals living in institutions were found to receive a greater number of medications than those living in the community, but the number of drugs increased more slowly for those living in an institution.

Second, the researchers found that polypharmacy near the end of life is fueled not only by drugs prescribed for the purpose of symptom management (e.g. analgesics), but also by the frequent continuation of long-term preventive treatments and disease-targeted drugs. For instance, during their last month of life, a large proportion of older adults used platelet antiaggregants (45%), beta-blockers (41%), ACE inhibitors (21%), vasodilators (17%), statins (16%), calcium channel blockers (15%), or potassium-sparing agents (12%).

“The clinical benefit of drugs aiming at preventing cardiovascular diseases during the final month of life is at the very least questionable. Physicians should consider discontinuing drugs that may be effective and otherwise appropriate, but whose potential harms outweigh the benefits that patients can reasonably expect before death occurs.” However, the authors noted that “the process of de-prescribing requires timely dialogue between the patient, family, and physician, and close monitoring of symptoms. It is also essential that patients and their relatives receive clear information about their options in terms of palliative care in order to counter the feeling of abandonment that they may experience when treatments are withdrawn.”

The authors call for the development of clinical guidelines to support physicians in their effort to reduce potentially futile drug treatments near the end of life.

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.

Complete Article HERE!

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05/13/17

Doctors need to be more honest with families facing critical care choices

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by Jazz Shaw

This is something of a sensitive topic and though we’ve tackled similar ones before, these stories always give me pause. At issue is a frankly heart wrenching story in the Washington Post from last week by Doctor Yvette Youssef. When she was younger, just entering medical school herself, her mother fell terribly ill, prompting a painful discussion among the family. What followed was a brutal journey through the medical system where it became clear that her mother was dying, but the medical team at the hospital never came out and told the family that until her life was just about ended.

Sometimes it feels like the great unspoken secret between doctors and nurses. The words that we dare not utter to patients and families. Perhaps it is our hope that we’re wrong. Perhaps we dread providing unwanted news. Perhaps we don’t want to face reality or extinguish our patients’ hope.

As a daughter, I felt that sense of sadness and dread, waiting to hear the news that would not be told. It was September 1989, and I was only 20 years old and just beginning my first year of medical school. It was less than a week from my first exam when my mother developed intractable nausea and vomiting. After several days of suffering at home, she decided it was time to go to the hospital.

I distinctly remember her sitting at the dining room table and saying goodbye to each of her seven children, starting with the youngest daughter, who had just started kindergarten, and finishing with me, the eldest, who had just started medical school.

Dr. Youssef was initially in denial, even growing angry with her mother and insisting that with a bit of treatment she would be on the mend and back home again. Her doctors actually encouraged that thinking for quite some time, but when it became obvious to everyone that her mother had known the truth from the beginning she was left with many questions which haunted her for years. What if they had been more honest? Would they have put her mother through all those additional, painful procedures just to wring out a few more weeks of life, all of which was spent essentially in hospice conditions?

This story reminded me of some of the previous research I’d done on the subject. One of the most important essays I’ve ever found on the topic dates back to 2011 and was written by Dr. Ken Murray. It’s called “How Doctors Die” and I’ve referenced it here in the past. His story begins with the tale of an orthopedist who he only refers to as “Charlie” who was diagnosed with pancreatic cancer. The story of how Charlie’s life ended was far, far different from what happened to Dr. Youssef’s mother.

Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. He had a surgeon explore the area, and the diagnosis was pancreatic cancer. This surgeon was one of the best in the country. He had even invented a new procedure for this exact cancer that could triple a patient’s five-year-survival odds–from 5 percent to 15 percent–albeit with a poor quality of life. Charlie was uninterested. He went home the next day, closed his practice, and never set foot in a hospital again. He focused on spending time with family and feeling as good as possible. Several months later, he died at home. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him.

As Murray points out, Charlie’s story isn’t unusual at all… at least among doctors. He knew he was dying and his colleagues who were caring for him knew it too. He could have undergone all of the chemo and radiation and all the rest and possibly squeezed out a few more months, but instead he had his colleague load him up with painkillers and went home to get as much out of his remaining days as he could.

But for most of us who are not inside the profession, that’s not an option which is discussed unless you demand it. Doctors immediately turn to the long, painful and frequently bankrupting procedures described above, allowing the family to think that just maybe their loved one will pull through in the end, even if the medical team knows that it would literally take a miracle.

And if a miracle is coming, shouldn’t they allow God to handle the heavy lifting in His own time?

This doesn’t sound like the sort of thing that could be easily addressed through government regulation even if you wanted to go that route. Perhaps, as Dr. Youssef suggests, the doctors are afraid of being sued. Or maybe they really don’t like giving bad news. But no matter the reason, it’s more of a cruelty than a kindness to the families to not at least tell them the truth and prepare them for all possible scenarios. I’m guessing that the best method to fix this is through pressure coming from the consumer end of the equation. Patients need to be more direct with their doctors, demand blunt answers no matter how painful they may be and similarly call for an honest range of options. Sometimes being at home with powerful painkillers is better than living in a hospital ward getting radiation for weeks on end if it’s not going to do more than allow you to cling on for a few more days. If that’s what you want to do, then so be it. But you should at least have all of the information at hand to make that choice.

Complete Article HERE!

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