08/7/17

Should I Help My Patients Die?

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I WAS leafing through a patient’s chart last year when a colleague tapped me on the shoulder. “I have a patient who is asking about the End of Life Option Act,” he said in a low voice. “Can we even do that here?”

I practice both critical and palliative care medicine at a public hospital in Oakland. In June 2016, our state became the fourth in the nation to allow medical aid in dying for patients suffering from terminal illness. Oregon was the pioneer 20 years ago. Washington and Vermont followed suit more recently. (Colorado voters passed a similar law in November.) Now, five months after the law took effect here in California, I was facing my first request for assistance to shorten the life of a patient.

That week, I was the attending physician on the palliative care service. Since palliative care medicine focuses on the treatment of all forms of suffering in serious illness, my colleague assumed that I would know what to do with this request. I didn’t.

I could see my own discomfort mirrored in his face. “Can you help us with it?” he asked me. “Of course,” I said. Then I felt my stomach lurch.

California’s law permits physicians to prescribe a lethal cocktail to patients who request it and meet certain criteria: They must be adults expected to die within six months who are able to self-administer the drug and retain the mental capacity to make a decision like this.
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But that is where the law leaves off. The details of patient selection and protocol, even the composition of the lethal compound, are left to the individual doctor or hospital policy. Our hospital, like many others at that time, was still in the early stages of creating a policy and procedure. To me and many of my colleagues in California, it felt as if the law had passed so quickly that we weren’t fully prepared to deal with it.

That aside, the idea of hastening death is uncomfortable for many doctors. In its original version, the Hippocratic oath states, “I will not administer poison to anyone when asked to do so, nor suggest such a course.” The American Medical Association, the nation’s largest association of doctors, has been formally opposed to the practice for 23 years. Its ethical and judicial council has recently begun to study the issue further.

At a dinner shortly after the law went into effect, I polled 10 palliative care colleagues on their impressions of it. There was a chorus of groans. Like me, they were being asked about it with increasing frequency, yet hadn’t found an answer that felt right. It wasn’t necessarily that we disapproved, but we didn’t want to automatically become the go-to people on this very complex issue, either.

This first patient of mine was not a simple case. When I walked into his room, he glared at me. “Are you here to help me with this aid-in-dying thing?” he asked. He was in his early 60s, thin and tired, but in no obvious distress. From my read of his chart, he met all criteria to qualify. Terminal illness, decision-making capacity, ability to self-administer the medications. And he had made the requisite first request for the drugs two weeks earlier, as procedure dictates.

When I asked why he wanted to end his life early, he shrugged. “I’m just sick of living.” I asked about any symptoms that might lie behind his request: unrelenting pain, nausea, shortness of breath. He denied them all. In palliative care, we are taught that suffering can take many forms besides the physical. I probed further and the floodgates opened.

He felt abandoned by his sister. She cared only about his Social Security payments, he said, and had gone AWOL now that the checks were being mailed to her house. Their love-hate relationship spanned decades, and they were now on the outs. His despair had given way to rage.

“Let’s just end this,” he said. “I’m fed up with my lousy life.” He really didn’t care, he added, that his sister opposed his decision.

His request appeared to stem from a deep family wound, not his terminal illness. I felt he wanted to punish his sister, and he had found a way to do it.

At our second meeting, with more trust established, he issued a sob, almost a keening. He felt terrified and powerless, he said. He didn’t want to live this way anymore.

I understood. I could imagine my own distress in his condition — being shuttled like a bag of bones between the nursing home and the hospital. It was his legal right to request this intervention from me. But given how uncomfortable I was feeling, was it my right to say no?

In the end, he gave me an out. He agreed to a trial of antidepressants. “I’ll give you four weeks,” he said. He would follow up with his primary care doctor. I couldn’t help feeling relieved.

The patient died in a nursing home, of natural causes, three months later. And I haven’t had another request since. But the case left me worried. What if he had insisted on going through with it?

I’ll admit it: I want this option available to me and my family. I have seen much suffering around death. In my experience, most of the pain can be managed by expert care teams focusing on symptom management and family support. But not all. My mother is profoundly claustrophobic. I can imagine her terror if she were to develop Lou Gehrig’s disease, which progressively immobilizes patients while their cognitive faculties remain largely intact. For my mother, this would be a fate worse than death.

But still. I didn’t feel comfortable with the idea of helping to shorten the life of a patient because of depression and resentment. In truth, I’m not sure I am comfortable with helping to intentionally hasten anyone’s death for any reason. Does that make me a hypocrite?

I realized it was past time to sort out my thinking and turned to the de facto specialist in our area on this issue for counsel. Dr. Lonny Shavelson, an emergency medicine and primary care physician in Northern California, has been grappling with the subject for many years.

Given his interest in the topic, Dr. Shavelson felt a personal obligation to ensure that this new practice would be carried out responsibly after the law was passed. He founded Bay Area End of Life Options, a consulting group that educates physicians, advocates on patients’ behalf and prescribes the lethal concoction for some patients who meet the criteria for participation.

He has devised a process for his patients that not only adheres to the letter of the law, but goes far beyond it. His patient intake procedures are time-consuming and include a thorough history and physical, extensive home visits, a review of medical records and discussions with the patients’ doctors. He assesses the medical illness, the patient’s mental and emotional state and family dynamics.

He does not offer the medications to most of the patients who request them, sometimes because he deems them more than six months away from death or because he is worried that they have been coerced or because he believes that severe depression is interfering with their judgment. Since starting his practice, he has been approached by 398 patients. He has accepted 79 of those into his program and overseen ingestion and death for 48.

Dr. Shavelson’s careful observations have made him something of a bedside pharmacologist. In his experience, both the medications used and their dosages should be tailored to individual patients. While all patients enter a coma within minutes of ingesting the lethal cocktail, some deaths take longer, which can be distressing for the family and everyone else involved. One of his patients, a serious athlete, experienced a protracted death that Dr. Shavelson attributes to the patient’s high cardiac function. After that experience, Dr. Shavelson began to obtain an athletic history on every patient, and to add stronger medications if indicated.

In another patient, a mesh stent had been deployed to keep his intestines from collapsing. This stent prevented absorption in key areas, slowing the effect of the drugs and prolonging his death. Dr. Shavelson now routinely asks about such stents, something that a doctor less experienced in this process might miss.

Dr. Shavelson strives to mitigate all symptoms and suffering before agreeing to assist any patient in dying. He recounted many cases where patients no longer requested the medications once their quality of life improved. He counts these cases among his greatest successes. This demonstrates that his commitment is to the patient, not the principle.

When I asked Dr. Shavelson how he might have proceeded with my patient, he said he would have tried everything to relieve his distress without using the lethal medication. But if in the end the patient still wanted to proceed, he would have obliged, presuming his depression was not so severe as to impair his judgment. “I don’t have to agree with a patient’s reasoning or conclusions,” he said. “Those are hers to make, just as much as turning down chemotherapy or opting not to be intubated would be.”

I recently called colleagues at other hospitals to learn how they were handling this law. Like me, most of them hadn’t yet had much experience with it, but their involvement has mostly been positive. They described the few cases they had handled as “straightforward” — patients had carefully thought through the decision and had full family support. Most patients were enrolled in hospice care and supported throughout the ingestion process by trained personnel, almost always in their homes. My colleagues reported that they were free to opt out of the program if they were uncomfortable prescribing the medications. (Catholic health systems do not participate.)

Dr. Meredith Heller, director of inpatient palliative services at Kaiser Permanente San Francisco, said that while she understood my ambivalence, she herself felt significantly better about it than she had expected to. “Surprisingly, the vast majority of cases here have gone smoothly,” she told me.

A little over a year after the law went into effect, I am heartened by the positive responses I am hearing from my colleagues around the state. I am relieved that most cases seem straightforward. I am grateful that there are dedicated physicians like Dr. Shavelson willing to do this work. And I am reassured by the knowledge that patients in California now have the legal right to exercise this power when they feel there is no other path.

But I am also concerned. As our population continues to grow older and sicker and more people learn that this law exists, we will need a highly trained work force to steward patients through this process.

My patient deserved an evaluation by a physician like Dr. Shavelson, not someone like me, with no training in this area and ambivalence to boot. We need formal protocols, official procedures, outcome measurements, even a certificate of expertise issued by an oversight board. None of these are in place in any participating state, according to Dr. Shavelson. Yet all medical procedures require training. Why should one this weighty be an exception?

What about payment? Providers can bill for an office visit and the cost of the medication. But because there are no specific codes established for this procedure, reimbursement doesn’t come close to covering any effort to do this well. On top of that, many insurers won’t cover it, including federal programs like Medicare and the Veterans Health Administration.

And will this new “right” be available to everyone? Most communities won’t have a Dr. Shavelson, who offers steep discounts to low-income patients. I worry that public hospital patients like mine will not be able to afford this degree of care. These are inequities we must address.

THERE is another question I feel compelled to raise. Is medical aid in dying a reductive response to a highly complex problem? The over-mechanization of dying in America has created a public health crisis. People feel out of control around death. A life-ending concoction at the bedside can lend a sense of autonomy at a tremendously vulnerable time.

Yet medical aid in dying will help only a tiny fraction of the population. In 2016, just under four-tenths of 1 percent of everyone who died in Oregon used this option. Other approaches such as hospice and palliative care, proven to help a broad population of patients with life-limiting illness, are still underused, even stigmatized. The American Society of Clinical Oncology recommends that patients with advanced cancer receive concurrent palliative care beginning early in the course of disease. In my experience, far too few of these patients actually get it.

Unlike medical aid in dying, which will be used by a small proportion of the population, palliative interventions can improve the lives of many. My patient hadn’t been seen by a palliative care physician before he made his request. Although recommended, it isn’t required by law. And yet this input gave him another option.

Medical aid in dying is now the law in my home state, and I am glad for that. But our work is just beginning. We must continue to shape our policies and protocols to account for the nuanced social, legal and ethical questions that will continue to arise. We must identify the clinicians who are best qualified and most willing to do this work and then train them appropriately, not ad hoc. And we must remember that this is just one tool in the toolbox of caring for the dying — a tool of last resort.

Complete Article HERE!

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07/7/17

The deaths that changed my life

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A palliative care specialist reveals what she’s learnt

With two decades of experience in helping people approach their final days in the best way possible, Adrienne Betteley shares her most touching and disturbing moments

 
First as a nurse, and then working with Macmillan Cancer Support, I have spent nearly 20 years helping people during the final months of their lives – and making sure that as many as possible have a “good” death is a great privilege.

If my experience of end-of-life care has taught me anything, it’s that there is indeed such a thing as dying “well”. Of course, the way we die varies depending on the cause of death, as well as the individual needs of the person, but there is also a tragic variation in the care and choice that people have as they approach their end.

At Macmillan, we believe the first step in achieving a “good” death is talking about it more – as we set out in our recent report, No Regrets. We looked at the taboo around discussing death, and how planning ahead can help people to die in a place of their choice and to have more control over their treatment.

So, in the spirit of talking more, and being honest, I’m sharing some of my experiences. I hope that it inspires others to do the same.

Dennis’ late wife, with her son (Adrienne’s husband) and grandchildren.

Closure is important

The first time I encountered death was when I was seven years old and living in Australia in the 1970s. My best friend, Stephen, died of leukaemia at the age of 11. He was the son of some close friends of my parents and was like a big brother to me. He was so kind-hearted, and I really looked up to him.

Death wasn’t seen as something children should know about, so I never visited him at hospital or went to his funeral. No one talked about Stephen dying, and I had recurring nightmares about it. I feel that I never had closure, and still think about it now sometimes.

Adrienne Betteley

Don’t let fear stop you

When I was 25, and living in Cheshire, my maternal grandmother Eileen was diagnosed with oesophageal cancer. Her reaction to finding out she was dying was calm; she began talking about her memories and writing them down.

I was pregnant and my granny “held on” until my daughter, Jasmine, was born. I took my daughter to hospital to meet her great-grandmother, a few weeks before she was moved to a hospice.

The experience with Stephen had scarred me, and I didn’t visit her in the hospice. I was too afraid. I thought it would be like a Victorian sanatorium, with people wailing and crying out.

Years later, while I was a student nurse, I realised a hospice can be a place of joy and peace – somewhere to treasure the end of life, rather than focus on death.
I regretted that I had let fear stop me saying goodbye to someone I loved dearly.

Adrienne Betteley couldn’t face visiting her grandmother in a hospice

Trust a professional

My first career was in architectural stained glass, but I also had a part-time job at a nursing home. One of the nurses asked me to help her lay out a woman who had just died. I was very nervous, but it turned out to be an amazing experience.

I had never seen anyone treat another person with such gentleness and respect. As the nurse washed her and did her hair as though she were still alive, I was in awe. She made her look lovely, in her favourite clothes and make-up.

I understood the huge value that this nurse placed on another person’s life. It was this moment that helped me choose my own future in caring for people at the end of their lives.

Focus on pain relief

While waiting for my nursing training to start, I worked in a different nursing home, where I had an awful experience.

I was looking after an elderly woman who was dying of uterine cancer and had become bedbound. One day, the nursing sister on duty told me to get her out of bed to use the commode. I went to do as I was told, but as soon I touched the woman she dug her nails into me and screamed out in pain. I had never witnessed such agony.

Filled with rage, I went straight to the nurse and shouted at her that nobody in this day and age should be allowed to experience such pain. Why were we moving her when it was clear she needed to be catheterised?

She listened to me and sorted out a catheter and a syringe driver for the pain. But it made me determined that no one should have to experience pain like that.

Communication is key

My father-in-law Dennis had been employed on the Crewe railway works, and after years of exposure to asbestos he was diagnosed with terminal lung cancer.

It was the poor communication we encountered that was really upsetting. He was never told his prognosis by a medical professional; in fact a hospital doctor, knowing my nursing background, asked me to tell him instead. I couldn’t believe they would put that kind of pressure on me. But I went ahead and did it; I felt that at least I would do a better job than this doctor.

Adrienne Betteley’s late father-in-law, Dennis

As soon as I’d told my father-in-law, I felt like the grim reaper. The whole experience blurred the boundaries between my professional life and my private relationship with him – it was damaging and I felt a mixture of guilt and anger.

Dennis was encouraged to have palliative chemotherapy, without being warned of the side effects. Any extra time the chemo bought him was overshadowed by painful mouth ulcers, nausea and fatigue. The treatment destroyed any quality of life, and barely extended it: he died within six months.

If he had been given an informed choice about treatment, I’m sure things could have been different.

Say goodbye the right way

A few years ago, my mother died of oesophageal cancer, like her own mum. My dad and I were at her side, and I’d spent the last week in a camp bed next to her, mopping her forehead as we shared memories.

On the night she died, she put her arm around me and said: “Adrienne, I have to thank you for being the most wonderful daughter.” What a privilege to be able to use my knowledge and experience to support my mum and make her death easier.

Adrienne Betteley’s late mother

A Macmillan occupational therapist had transformed mum’s quality of life, making it possible to fulfil her wish of dying at home. As a nurse, I could advocate for her, and demand the right pain relief – but it really brought home how hard it would be for people without my professional background.

Knowing I’d done everything possible to fulfil her wishes made the grieving process easier, but I still had frustrations about what could have been better – especially the lack of support available at the very end. It sounds clichéd to say “dying is inevitable” or “death is the only certainty” – of course we all die, everyone knows that. But all too often, it feels like we are hiding from it. The fact that it will affect every one of us should galvanise us into action, so we demand a “good” death that is pain-free and meets our preferences about treatment and location – for ourselves and those we care about.

Complete Article HERE!

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04/28/17

For Some, Pre-Hospice Care Can Be A Good Alternative To Hospitals

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At Gerald Chinchar’s home in San Diego, Calif., Nurse Sheri Juan (right) checks his arm for edema that might be a sign that his congestive heart failure is getting worse.

By Anna Gorman  

Gerald Chinchar, a Navy veteran who loves TV Westerns, isn’t quite at the end of his life, but the end is probably not far away. The 77-year-old’s medications fill a dresser drawer, and congestive heart failure puts him at high risk of emergency room visits and long hospital stays. He fell twice last year, shattering his hip and femur, and now gets around his San Diego home in a wheelchair.

Above all, Chinchar hopes to avoid another long stint in the hospital. He still likes to go watch his grandchildren’s sporting events and play blackjack at the casino.

“If they told me I had six months to live, or [could instead] go to the hospital and last two years, I’d say leave me home,” he said. “That ain’t no trade for me.”

Most aging people would choose to stay home in their last years of life. But for many, it doesn’t work out: They go in and out of hospitals, getting treated for flare-ups of various chronic illnesses. It’s a massive problem that costs the health care system billions of dollars and has galvanized health providers, hospital administrators and policymakers to search for solutions.

Sharp HealthCare, the San Diego health system where Chinchar receives care, has devised a way to fulfill his wishes and reduce costs at the same time. It’s a pre-hospice program called Transitions, designed to give elderly patients the care they want at home and keep them out of the hospital.

Social workers and nurses from Sharp regularly visit patients in their homes to explain what they can expect in their final years, help them make end-of-life plans and teach them how to better manage their diseases. Physicians track their health and scrap unnecessary medications.

All the medicine Chinchar takes for his congestive heart failure and other ailments fills a kitchen drawer. “What we like to do as a palliative care program is streamline your medication list,” the nurse explained during a home visit. “They may be doing more harm than good.”

Unlike hospice care, patients in this program don’t need to have a prognosis of six months or less to live, and they can continue getting treatment that is aimed at curing their illnesses, not just treating symptoms.

Before the Transitions program started, the only option for many patients in a health crisis was to call 911 and be rushed to the emergency room. Now, they can get round-the-clock access to nurses, one phone call away.

“Transitions is for just that point where people are starting to realize they can see the end of the road,” said Dr. Dan Hoefer, a San Diego palliative care and family practice physician, and one of the creators of the program. “We are trying to help them through that process,” he said, “so it’s not filled with chaos.”

The importance of programs like Transitions is likely to grow in coming years as 10,000 baby boomers — many with multiple chronic diseases — turn 65 every day. Transitions was among the first of its kind, but several such programs, formally known as home-based palliative care, have since opened around the country. They are part of a broader push to improve people’s health and reduce spending through better coordination of care and more treatment outside hospital walls.

But a huge barrier stands in the way of pre-hospice programs: There is no clear way to pay for them. Health providers typically get paid for office visits and procedures, and hospitals still get reimbursed for patients in their beds. The services provided by home-based palliative care don’t fit that model.

In recent years, however, pressure has mounted to continue moving away from traditional payment systems. The Affordable Care Act has established new rules and pilot programs that reward the quality of care, rather than the quantity. Those changes are helping to make home-based palliative care a more viable option.

In San Diego, Sharp’s palliative care program has a strong incentive to reduce the cost of caring for its patients, who are all in Medicare managed care. The nonprofit health organization receives a fixed amount of money per member each month, so it can pocket what it doesn’t spend on hospital stays and other costly medical interventions.

‘Something that works’

Palliative care focuses on relieving patients’ stress, pain and other symptoms as their health declines, and it helps them maintain their quality of life. It’s for people with serious illnesses, such as cancer, dementia and heart failure. The idea is for patients to get palliative care and then move into hospice care, but they don’t always make that transition.

The 2014 report “Dying in America,” by the Institute of Medicine, recommended that all people with serious advanced illness have access to palliative care. Many hospitals now have palliative care programs, delivered by teams of social workers, chaplains, doctors and nurses, for patients who aren’t yet ready for hospice. But until recently, few such efforts had opened beyond the confines of hospitals.

Kaiser Permanente set out to address this gap nearly 20 years ago, creating a home-based palliative care program that it tested in California and later in Hawaii and Colorado. Two studies by Kaiser and others found that participants were far more likely to be satisfied with their care and more likely to die at home than those not in the program. (Kaiser Health News is not affiliated with Kaiser Permanente.)

One of the studies, published in 2007, found that 36 percent of people receiving palliative care at home were hospitalized in their final months, compared with 59 percent of those getting standard care. The overall cost of care for those who participated in the program was a third less than for those who didn’t.

“We thought, ‘Wow. We have something that works,'” said Susan Enguidanos, an associate professor of gerontology at the University of Southern California’s Leonard Davis School of Gerontology, who worked on both studies. “Immediately we wanted to go and change the world.”

But Enguidanos knew that Kaiser Permanente was unlike most health organizations. It was responsible for both insuring and treating its patients, so it had a clear financial motivation to improve care and control costs. Enguidanos said she talked to medical providers around the nation about this type of palliative care, but the concept didn’t take off at the time. Providers kept asking the same question: How do you pay for it without charging patients or insurers?

“I liken it to paddling out too soon for the wave,” she said. “We were out there too soon. … But we didn’t have the right environment, the right incentive.”

A bold idea, rooted in experience

Hoefer is a former hospice and home health medical director and has spent years treating elderly patients. He learned an important lesson when seeing patients in his office: Despite the medical care they received, “they were far more likely to be admitted to the hospital than make it back to see me.”

Doctors, nurses and social workers meet bimonthly to discuss patient cases for the Sharp HealthCare Transitions program in San Diego.

Doctors, nurses and social workers meet bimonthly to discuss patient cases for the Sharp HealthCare Transitions program in San Diego.

When his patients were hospitalized, many would decline quickly. Even if their immediate symptoms were treated successfully, they would sometimes leave the hospital less able to take care of themselves. They would get infections or suffer from delirium. Some would fall.

Hoefer’s colleague, Suzi Johnson, a nurse and administrator in Sharp’s hospice program, saw the opposite side of the equation. Patients admitted into hospice care would make surprising turnarounds once they stopped going to the hospital and started getting medical and social support at home, instead. Some lived longer than doctors had expected.

In 2005, the pair hatched a bold idea: What if they could design a home-based program for patients before they were eligible for hospice? Thus, Transitions was born. They modeled their new program in part on the Kaiser experiment, then set out to persuade doctors, medical directors and financial officers to try it. But they met resistance from physicians and hospital administrators who were used to getting paid for seeing patients.

“We were doing something that was really revolutionary, that really went against the culture of health care at the time,” Johnson said. “We were inspired by the broken system and the opportunity we saw to fix something.”

Despite the concerns, Sharp’s foundation board gave the pair a $180,000 grant to test out Transitions. And in 2007, they started with heart failure patients and later expanded the program to those with advanced cancer, dementia, chronic obstructive pulmonary disease and other progressive illnesses. They started to win over some doctors who appreciated having additional eyes on their patients, but they still encountered “some skepticism about whether it was really going to do any good for our patients,” said Dr. Jeremy Hogan, a neurologist with Sharp. “It wasn’t really clear to the group … what the purpose of providing a service like this was.”

Nevertheless, Hogan referred some of his dementia patients to the program and quickly realized that the extra support for them and their families meant fewer panicked calls and emergency room trips.

Hoefer said doctors started realizing home-based care made sense for these patients — many of whom were too frail to get to a doctor’s office regularly. “At this point in the patient’s life, we should be bringing health care to the patient, not the other way around,” he said.

Across the country, more doctors, hospitals and insurers are starting to see the value of home-based palliative care, said Kathleen Kerr, a health care consultant who researches palliative care.

“It is picking up steam,” she said. “You know you are going to take better care of this population, and you are absolutely going to have lower health care costs.”

Nurse Sheri Juan and social worker Mike Velasco, take health care to the Chinchars.

Providers are motivated in part by a growing body of research. Two studies of Transitions in 2013 and 2016 reaffirmed that such programs save money. The second study, led by outside evaluators, showed it saved more than $4,200 per month on cancer patients and nearly $3,500 on those with heart failure.

The biggest differences occurred in the final two months of life, said one of the researchers, Brian Cassel, who is palliative care research director at the Virginia Commonwealth University School of Medicine in Richmond.

A home visit tailored to each family

Nurse Sheri Juan and social worker Mike Velasco, who both work for Sharp, walked up a wooden ramp to the Chinchars’ front door one recent January morning. Juan rolled a small suitcase behind her containing a blood pressure cuff, a stethoscope, books, a laptop computer and a printer.

Gerald Chinchar’s wife, Mary Jo (right), told the visiting nurse she especially appreciates getting the advice about what her husband should eat and drink. He doesn’t always listen to his wife, Mary Jo said. “It’s better to come from somebody else.”

Late last year, Gerald Chinchar’s doctor recommended he enroll in Transitions, explaining that his health was in a “tenuous position.” Chinchar has nine grandchildren and four great-grandchildren. He has had breathing problems much of his life, suffering from asthma and chronic obstructive pulmonary disease — ailments he partly attributes to the four decades he spent painting and sandblasting fuel tanks for work. Chinchar also recently learned he had heart failure.

“I never knew I had any heart trouble,” he said. “That was the only good thing I had going for me.”

Gerald Chinchar’s wife, Mary Jo (right), told the visiting nurse she especially appreciates getting the advice about what her husband should eat and drink. He doesn’t always listen to his wife, Mary Jo said. “It’s better to come from somebody else.”

Now he’s trying to figure out how to keep it from getting worse: How much should he drink? What is he supposed to eat?

That’s where Juan comes in. Her job is to make sure the Chinchars understand Gerald’s disease so he doesn’t have a flare-up that could send him to the emergency room. She sat beside the couple in their living room and asked a series of questions: Any pain today? How is your breathing?

Juan checked his blood pressure and examined his feet and legs for signs of more swelling. She looked through his medications and told him which ones the doctor wanted him to stop taking.

“What we like to do as a palliative care program is streamline your medication list,” she told him. “They may be doing more harm than good.”

His wife, Mary Jo Chinchar, said she appreciates the visits, especially the advice about what Gerald should eat and drink. Her husband doesn’t always listen to her, she said. “It’s better to come from somebody else.”

Growing acceptance of palliative care

Chinchar (left) is now 77. He told nurse Sheri Juan he never expected to live into old age. In his family, he said, “you’re an old-timer if you make 60.”

Outpatient palliative care programs are cropping up in various forms. Some new ones are run by insurers, others by health systems or hospice organizations. Others are for-profit, including Aspire Health, which was started by former senator Bill Frist in 2013.

Sutter Health operates a project called Advanced Illness Management to help patients manage symptoms and medications and plan for the future. The University of Southern California and Blue Shield of California recently received a $5 million grant to provide and study outpatient care. “The climate has changed for palliative care,” said Enguidanos, the lead investigator on the USC-Blue Shield project.

Ritchie said she expects even more home-based programs in the years to come. “My expectation is that much of what is being done in the hospital won’t need to be done in the hospital anymore and it can be done in people’s homes,” she said.

Challenges remain, however. Some doctors are unfamiliar with the approach, and patients may be reluctant, especially those who haven’t clearly been told they have a terminal diagnosis. Now, some palliative care providers and researchers worry about the impact of President Donald Trump’s plans to repeal the Affordable Care Act and revamp Medicare — efforts that seem to be back in play.

Gerald Chinchar, who grew up in Connecticut, said he never expected to live into old age. In his family, Chinchar said, “you’re an old-timer if you make 60.”

Chinchar said he gave up drinking and is trying to eat less of his favorite foods — steak sandwiches and fish and chips. He just turned 77, a milestone he credits partly to the pre-hospice program.

“If I make 80, I figured I did pretty good,” he said. “And if I make 80, I’ll shoot for 85.”

Complete Article HERE!

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04/13/17

Medical advancements have changed the way we die and view the process of death

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The process of dying is a more complicated issue today because of advancements in life-sustaining technologies

“Due to innovations in medical technology, our perception of death has changed as we are more able to alter the natural path of the human life.”

By Yasmine Mian

How we die is a profoundly personal journey.

As college students, we don’t consider the topic of death frequently, let alone the process of dying. However, it is a universal theme that does not discriminate against anyone, no matter their age.

Throughout history, the process of dying is represented differently across cultures and religions. While some religions, like Buddhism and Hinduism believe it marks the beginning of rebirth or reincarnation after death, others, like Christianity, believe it marks the beginning of a journey to Heaven.

Regardless of the beliefs, to fully understand the process of dying and its aftermath, we must examine how the dying process has changed over time.

Throughout our history—particularly recently with medical advancements—the human race has looked far and wide to answer a complex question: What is a natural death? With so many life-sustaining technologies to potentially keep us alive indefinitely, many don’t know what a natural death entails anymore.

Universities like ASU offer courses exploring the cultural and religious aspects of death and dying. 

While the biological process of dying is universal, the behaviors associated with expressing grief are very much culturally bound. Courses like these offered at universities allow students to learn how cultures have developed ways to cope with the process of dying.

Sally Johnson, a professor of psychology at Glendale Community College, believes that all students should study the cross cultural aspects of death.

“By learning about the way different cultures and religions treat the dying process, we can gain more insight into how they deal with the heartache and pain that comes along with death and how it manifests itself in the funeral/death process,” she said. 

However, it is important to remember that the process of dying has drastically changed over the past several decades with the development of modern resuscitative technologies. It seems as if a “natural death” has no place in our society anymore.

The idea of a natural death is merely a reflection of the social and scientific context of the time that death took place in.

When we picture a natural death, we envision an individual lying in bed surrounded by loved ones, taking their last breaths in a place of comfort and homeliness, a sight of peace and tranquility often dreamed of in literature.

However, with the help of modern medicine and innovative technology, our perceptions of natural death have now changed.

Thanks to modern medicine, diseases like polio, scarlet fever and others have been rendered preventable, treatable, or far less common now. This has led to a dramatic extension of life.

However, these new technologies have also been used to prolong the life expectancy of individuals with terminal illnesses, such a cancer.

While the idea of prolonging life might sound like a good thing, it often forces patients, their loved ones and their doctors to make difficult, painful decisions.

In some cases, when patients have no hope of surviving, we use technology and drugs to simply keep them alive in a biological sense. 

Families and doctors may feel as though they need to exhaust every available treatment or medication to prolong the dying process, however, that can be a naive and selfish outlook. 

But what we don’t understand is that there is a difference between being alive and living. Medicine can’t cure everything, but we often act as though death is optional.

The dying process is usually centered around the elderly, who are approaching there last few months of life due to natural causes. When younger individuals do die, it’s usually the cause of an accident or life-threatening disease.

However, individuals of all ages, especially students should be aware of the cultural significance of death, especially as we begin to cope with the loss of loved ones or go into professions where death is common. 

We must recognize the limits of our human knowledge and technology and accept the fact that eventually, all of us will die. As morbid as it sounds, it is a natural process of life and should not be pegged as a taboo topic. 


 

Complete Article HERE!

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04/12/17

Sharing One’s End of Life Choices – via a Mobile Device

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Patients can now use their smartphones to share their wishes for end of life care — whether or not they want to be intubated or have CPR, for example — with ambulance crews, loved ones, emergency-room doctors and hospitals.

No more fumbling for a piece of paper, signed by the doctor, to show health-care providers when a terminally ill loved one is rushed to the hospital. Patients in New Jersey can have their wishes become part of their electronic medical record and shared on mobile devices.

The online version of the “Practitioner Orders for Life-Sustaining Treatment” was launched Friday, almost five years after New Jersey authorized the use of a paper form for frail and severely ill patients. The online version will be part of a registry maintained by the New Jersey Hospital Association, with strict safeguards for patient privacy.

“We’re moving beyond having a green paper hanging on the refrigerator,” said Health Commissioner Cathleen D. Bennett, speaking of the paper version of the POLST forms. When patients articulate their preferences, it helps them to live on their own terms at the end of life, she said.

They can also express their goals for care, ranging from a full attack on their disease to palliative or comfort care. The form is signed by both the patient and the doctor or advanced-practice nurse, and is considered a medical order. Emergency personnel can follow it whenever the patient can’t speak for himself.

Joseph Carr, NJ Hospital Association Chief Information Officer, demonstrates how the emPOLST can be accessed electronically and how it can help inform care.

“Through this tool, more health-care providers will have immediate access to critical information they need to treat the patient according to the patient’s health-care preference,” Bennett said. “Patients with smart phones also will be able to share their electronic POLST form with a new physician, specialist or emergency-room doctor.”

In New Jersey, about 11,000 patients a year created POLST forms at each of the hospitals that participated in a study of it, said Joseph A. Carr, chief information officer for the New Jersey Hospital Association, who demonstrated the electronic version.

At a ceremony at the Villa Marie Claire Hospice in Saddle River, Bennett and Betsy Ryan, president of the association, signed an agreement for the association to become the online repository for the POLST forms. The villa, a former convent, is an inpatient hospice for 20 patients that is part of Holy Name Medical Center.

Talking about the end-of-life is one of the most important conversations a family can have, said Michael Maron, president of the medical center. The hospice’s decade of work has taught him that patients feel comforted and empowered when they are able to communicate their choices clearly and effectively, and they are understood by caregivers and loved ones.

The POLST form is available from the Department of Health or the New Jersey Hospital Association. For more information, also see National POLST Paradigm.

Complete Article HERE!

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03/25/17

Nursing my dying mother made me determined that everyone should have a ‘good’ death

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By Adrienne Betteley

When my mum Joan died of oesophageal cancer in 2014, she was in the place she wanted to spend her last days – the spare bedroom at home – with me and my dad, Cliff, by her side.

I’d spent the last week in a camp bed next to Mum, wiping her lips and mopping her forehead as we shared memories.

On the night she died, she put her arm around me and said “Adrienne, I have to thank you for being the most wonderful daughter.” Afterwards, our district nurse made my dad a whisky and me a cup of tea as we said our final goodbyes.

Not without serious difficulty

Mum had a ‘good death’, but not without serious difficulties at times. I can’t help thinking it was my background as a district nurse that allowed her to die at home with her family. My experience meant I was listened to, and I pushed for her to get what she needed, such as acupuncture at the local hospice to relieve her crippling pain from arthritis. I knew what to expect and what conversations to have. We had early discussions about how she wanted to die (at home, not in hospital) and where (not next to Dad in their bed), which we call Advance Care Planning in the medical profession. At Macmillan, we believe that more needs to be done to ensure people are planning for their deaths, so their wishes – such as where they die – can be met.

Sadly, a death like my mum’s is denied to so many in this country. And I believe it would have been impossible for her too, had she not happened to have a nurse for a daughter. I had to fight to get her the care she desperately needed. Services are depleted, especially out of hours. You can’t choose when advanced cancer will cause you pain, but getting pain-relief at night or on weekends can be impossible. In her final days, there was no availability for a night sitter. Thankfully, I could be by her bedside, but had I not been, I’m convinced she would have died in hospital against her wishes.

Findings published in the British Medical Journal last week help explain why some people aren’t getting enough support when they are dying. Care for dying people varies hugely across different regions, both in how much money services are allocated and what care they offer. Figures suggested that, in most parts of the country, there are no specialist pain control teams, and, where they are in place, most operate only in normal working hours with no cover overnight. Until you’ve had a loved one in pain, with no way of providing them relief, it’s hard to appreciate the urgency of this situation.

Having a choice

Pain relief is the very least we should expect at the end of our lives. But it’s also important that, where possible, patients can die in a place of their choosing. We know that most people with advanced cancer would prefer to die at home, but not many of them actually do. Without round-the-clock community nursing, it’s hard to see how this will improve.

My days as a district nurse taught me that getting things right for people at the end of their life takes time. Decisions made about treatment affect how that person will spend their last months, weeks, hours, in this world. But time is something our overstretched workforce doesn’t have. Last month came another heart-breaking revelation – that over two thirds of nurses ‘don’t have time’ to care for dying patients. Is this really what we’ve come to? Something has to change.

Painless death must be priority

I know what a good death looks like, and that it is achievable. But to give everyone a chance to die without pain, and in the place they want to, care for dying people needs to be a priority across the country. As the NHS and local councils set out their plans to transform healthcare, it’s vitally important that they take into account how they will care for people at the end of their lives. At Macmillan, we’ll be monitoring these plans closely to make sure they do.

Those last few weeks with my mum were exhausting, but they were special and irreplaceable. Helping her in her final days with the people she loved, in the house she knew, was the most meaningful thing I’ve ever done. Caring how people die isn’t just about death, but about the value we place on life.

Complete Article HERE!

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03/9/17

How to Die Well

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By Jessica Nutik Zitter

I first met Stephanie in the Intensive Care Unit. She was an urgent admission — in shock, her blood pressure was almost unmeasurable. Over the previous month, the rate of cancerous fluid building up around her lungs had increased. She had used the permanent drainage tube in her chest wall more frequently to manage her shortness of breath. But in the process, she had made her blood pressure dangerously low. She was unconscious and mumbling incoherently. Her kidneys and liver weren’t getting enough blood and were effectively dying. We worked quickly. And we were lucky enough to be able to rehydrate her before her organs became permanently damaged. Slowly, she woke up again. We had saved her.

Stephanie was a 60-year-old wife, mother and grandmother. She loved life. Wine tastings, gardening, spending time with her family — this didn’t stop when she was diagnosed. When she had learned that the cancer had spread to the other lung and brain, she took a deep breath and went back into the ring to fight. She signed up for more chemotherapy. If she worked hard, she thought, she could beat it.

I wanted to celebrate with Stephanie and her family — she was no longer in critical condition — but I couldn’t. Our “fix” wasn’t going to change the fact that her cancer would continue to worsen. And fast. More chemotherapy would not save this woman. I had to tell her the truth.

When I walked into the room, Stephanie’s daughter Becky was giving her a massage. I thought of a manager preparing his boxer to return to the ring. “We’re ready to get back in there and fight,” Becky told me. “Bring on the chemotherapy.” Stephanie looked tired, but nodded. I took a deep breath and sat on the side of the bed.

I explained that it was only a matter of time before Stephanie’s organs failed again. The next time, she probably wouldn’t be so lucky. The corners of Stephanie’s mouth pointed down, like two arrows, and I wasn’t sure if she was getting ready to cry or yell. “Please leave,” Becky said.

I had done the right thing, but nonetheless I felt ashamed. I wasn’t the doctor they had been hoping for. I wasn’t their hero.

We all know we will die. But somehow none of us believes it. This is a serious obstacle to dying well.

To start to find a way to experience a better end, we need to reflect on our own deaths and begin the process of accepting our mortality. This may happen through meditation, writing or conversations. Of course we should have hope if illness strikes us, but hope for perpetual life is blind. As we age or grow ill, the goal may switch from hope for longer life to hope for more attainable goals like healing relationships, living pain-free and enjoying a glass of Cabernet.

Simultaneously, we must prepare for this final stage of life. We must consider our preferences and values and shared them with our loved ones. Stephanie cared about being at home, with her family. What is most important to you? What would be most important to your loved ones? One day you might be called on to represent them. This conversation should happen repeatedly over the years, through the various stages of life and changes in health.

We must all — doctor, nurse, patient and family — also remember that these decisions require the collaboration of a whole team. The doctor is indeed the expert on the disease, but the patient is the expert on the patient. If you feel that you are not being included in decision-making for yourself or a loved one, or you don’t feel the team is communicating well, request a palliative care consultation, which brings communication expertise into the picture.

Two days later, I went upstairs to check on Stephanie and her family. I was no longer responsible for the case. Still, I worried that I had upset them, and I wanted to check in. I was dreading it.

But when I reached the room, there was Stephanie sitting in a wheelchair, smiling. She was going home that day. The family had had some time to absorb the news, and then they had changed the course of care. They had met with a hospice service. No more hospitals. No more chemotherapy.

Stephanie enjoyed the last two months of life with the support of hospice, her family and several bottles of good wine. Her funeral, which I attended, was replete with wonderful stories and not an ounce of regret. She died in my arms, Becky said, and it was as loving and peaceful a death as you could imagine.

Stephanie’s last couple of months might have looked very different. Like many of my patients, she could have died attached to machines. She could have been isolated from her family instead of in a cozy bed in the middle of the living room. And rather than the taste of wine and crackers, she could have had breathing and feeding tubes filling her mouth.

I’ve seen so many patients, so many lives, so many deaths. Far too few have the opportunity to live the life they would choose all the way through to the end. I believe deaths like Stephanie’s should be the rule, rather than the exception. And that is going to take some work from all of us — in the form of reflection, preparation and collaboration.

When it comes to death and dying, the answer is found in honest communication and human connection rather than technology and protocols. We’ve achieved amazing things in modern medicine. Our tools can serve to bring the dying back to life. But too often they take life away from the dying.

Complete Article HERE!

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