Category: Extraordinary Measures

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Q+A: How Should You Talk to Your Doctor About End-of-Life Care?

by Lauren Ingeno

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No one wants to talk about death. But when a loved one is faced with old age or a serious illness, there are choices that need to be made. How does the patient feel about life-sustaining measures in the face of terminal illness? Does he or she have strong feelings about mechanical breathing, CPR or chemotherapy? What factors will be most important to the dying person — physical comfort, no pain, treatment costs?

As an emergency medicine doctor, Laura Vearrier, MD, a clinical assistant professor at Drexel University College of Medicine, sees plenty of family members having to make these decisions for sometimes impaired or incapacitated patients. Stress is high. Emotions are involved. What’s worse, there isn’t time for physicians to sit down and properly explain medical procedures or lay out options.

Advanced care planning allows people to maintain authority in their medical decision-making. However, the current legal framework for advance directives make them inadequate as an effective end-of-life planning tool, argues a recent paper from Vearrier, published in the HealthCare Ethics Committee Forum.

Her solution? More mandatory, frank communication between primary care physicians and their patients about the end of life and medical care — long before a patient is unhealthy.

Vearrier weighed in on problems with the current end-of-life care paradigm and how it can be improved.

What is end-of-life planning? Who does it primarily concern?
A lot of people don’t start talking about end-of-life care until they have a chronic disease, but advance care planning is really something that every adult should be thinking about early on, long before a time of illness, when there are a lot of emotions involved. End-of-life care decisions fall on a continuum that ranges from a focus on prolonging life with all available technology, to a focus primarily on comfort. There are decisions people need to make about, for instance, whether having more time alive with family and friends is preferable, even if that means prolonging suffering and giving up independence. Advance directives, commonly known as a living will, allows you to document your end-of-life medical treatment preferences. A healthcare proxy allows you to designate a person you trust as a decision maker on your behalf.

How did you become interested in the issue of end-of-life planning?
In the Emergency Department, I see many patients who are critically ill, and their families haven’t thought about their options ahead of time. When doctors present families with options about their loved one, they often don’t understand what the doctor is talking about, much less what their loved one would want. And with having to deal with the stress of a sick family member, it’s even harder to process new information.

 How common are living wills?
According to the 2008 Advance Directives and Advance Care Planning: Report to Congress, only 18 to 36 percent of the adult population has completed advance directives. And even those with serious medical conditions have completed advanced directives at only a slightly higher rate. A study of cancer patients in 2000 showed that only 9 percent of patients had discussed advanced directives with their oncologists, and only 23 percent of the remaining patients indicated they wished to do so. There are also differences between racial and socioeconomic groups. The report shows that white race and a higher socioeconomic status are related to a greater likelihood of having a living will.

What is the Physician Orders for Life-Sustaining Treatment Paradigm?
POLST was developed as a response to the failed process of advance directives as an end-of-life planning tool, but it is not intended to replace advanced directives. It is a health care planning tool that encourages doctors to speak with patients who are very ill and can be transferred between different health care facilities. A POLST form is completed by a health care professional rather than a patient. The POLST form identifies “Do Not Resuscitate” orders, but it also lists other treatment preferences, like whether a patient would wish to go to a hospital or stay home.

You are critical of the POLST form in your recent paper. Why?
POLST has played an important role in increasing the documentation of end-of-life preferences. However, the problem remains that people do not really understand a lot of their options. The POLST form uses a lot of specialized jargon, and it can be even more confusing than advance directives. Even social workers who discuss the forms with their patients have a poor understanding of some of their options. So when it comes time for a physician to interpret the orders, they might not really be fulfilling the patient’s treatment wishes.

What surprised you the most when researching this topic?
I was surprised about how poorly people understand their options when it comes to having to make decisions about end-of-life care and also how uncommonly people discuss it with their physicians. Physicians may not even be aware that their patients have an advance directive.

What’s the solution?
Increased communication that occurs on a routine, non-emergent basis. I think talking about the end of life and medical care should be a discussion that starts when someone is healthy, with the awareness that it’s something that may, and probably will, change over time. Since treatment preferences may change with age, health status and the current state of medical technology, discussions should occur on a yearly basis with every adult patient in the case that something happens to them. Also, everyone should be discussing their preferences with their families.

A lot of physicians are hesitant or may feel poorly prepared to have these discussions, which is why they don’t happen until someone is ill or has exhausted all of their treatments. Then lack of time becomes a barrier. To change this, it should be something that’s done on a routine basis at every yearly check-up with a primary care doctor. It’s just like the “in case of an emergency” safety protocols that are communicated on every single airplane flight. It’s repeated every time, so everyone is aware what could happen and what the procedure would be. There needs to be a culture shift, so that patients are educated and empowered about their treatment options, in case they are ever in a position where they are no longer capable of making those decisions.

Complete Article HERE!

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Dying In A Hospital Means More Procedures, Tests And Costs

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When it comes to the end of life, hospital stays are more intensive and more expensive than alternatives.
When it comes to the end of life, hospital stays are more intensive and more expensive than alternatives.

People who die in the hospital undergo more intense tests and procedures than those who die anywhere else.

An analysis by Arcadia Healthcare Solutions also shows that spending on people who die in a hospital is about seven times that on people who die at home.

The work confirms with hard data what most doctors and policymakers already know: Hospital deaths are more expensive and intrusive than deaths at home, in hospice care, or even in nursing homes.

“This intensity of services in the hospital shows a lot of suffering that is not probably in the end going to offer people more quality of life and may not offer them more quantity of life either,” says Dr. Richard Parker, chief medical officer at Arcadia.

Arcadia analyzed all the Medicaid claims data for a private Medicaid insurance company in one Western state and detailed how many billable medical procedures each patient received and where. Patients in hospitals were billed for far more medical interventions in the last days of their lives than people who died in other settings. The company declined to name the state or company.001

The study showed that 42 percent of patients died at home at a cost of about $4,760 for their last month of life, while 40 percent died in a hospital at a cost of $32,379. Dying in a nursing home was the second most expensive locale, inpatient hospice was third and an emergency room was fourth.

“In the end, everyone died. They all died,” Parker tells Shots. “If we look at this retroactively, retrospectively — and we could go back and ask people — I bet most of them would say I’d rather be home with my family.”

Parker says the cost of hospital deaths paid for by Medicare or private insurance are likely even higher because they pay doctors and hospitals more for their services.

Many studies have shown that people, when asked, say they’d prefer to die at home rather than in a hospital. However, those wishes aren’t always realized if a person hasn’t given clear instructions to a doctor or family member.

Parker says hospitals are designed to cure people who are ill rather than to allow people to die peacefully.

“The culture of American medicine today and for the last several decades is to keep treating patients regardless of the quality of life,” he says. “A lot of physicians have been reluctant to admit that the patient’s life is coming to an end.”

The picture is more complicated than the data show, says Dr. Lachlan Forrow, a professor of medicine and medical ethics at Harvard University.

Many patients move from home to hospice to hospitals and back during the last 30 days of life. And some may end up in the hospital because their pain or symptoms weren’t adequately controlled at home.

Still, he says, hospitals are just not good at caring for dying people.

“We do lots of very expensive things in hospitals to people in the last part of life who would rather be home, and we do those in part because in the hospital they get paid for,” he says.

It’s the only way to justify keeping in a hospital the people who need around the clock nursing care but can’t get it at home.

“If we really tried to make sure people at home could have what they needed at home, we could take better care of them, with less medical system-caused suffering, at lower cost, sometimes much lower cost,” he says.

Complete Article HERE!

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In the last months or days, these treatments can make things worse

By Tammy Worth

doctor and cancer

A woman with ovarian cancer who came to see internist Leslie Blackhall was very upset. The woman’s oncologist had told her it was time to discontinue treatment — that it was doing more harm than good. Blackhall knew that the effects of more chemotherapy would be intense and would compromise this patient’s immune system while buying her only a bit more time. So she asked the woman, who was in her 60s, what she would do with more time. The response: Have more chemo, on the chance it might let her live longer.

Medical advances bring the promise of extending life, but some of the treatments used in a person’s last months, weeks or days — such as CPR for failing hearts, dialysis for failing kidneys and feeding tubes for those unable to nourish themselves — often do not provide more time and can worsen quality of life.

Yet saying no to more treatment is tremendously hard to do, whether that decision is made by patients or by relatives for patients who are too infirm to express themselves.

“People don’t have a good way to think about end of life,” said Blackhall, an associate professor of internal medicine at the University of Virginia Health System in Charlottesville. “If we tell people, ‘Chemo isn’t going to help you,’ they still want it. We [all] want a peaceful, comfortable, dignified death . . . but not yet,” she said.

So what has research found about commonly used end-of-life interventions? Which ones can be useful and which are not, and when should they be administered?

Resuscitation

CPR is just one of the treatments offered in hospitals and other medical settings with the purpose of keeping people alive so an underlying health condition can be treated. For instance, a young and healthy person who has a major allergic reaction to a drug can be given CPR to bring them back and treat the reaction.

But CPR is frequently used even when there is no intervention that can prolong life. For a person with metastatic cancer or late-stage dementia whose heart stops beating, the odds are quite low that resuscitation will be lifesaving, said Blackhall, who began studying this issue in the late 1980s.

Numerous studies have borne this out, one of the most recent being a2009 analysis in the New England Journal of Medicine that looked at more than 400,000 people older than 65 who received in-hospital CPR. Researchers found that only 18 percent survived long enough to be discharged. The survival rate dropped at higher ages, with only 12 percent of those 90 and older recovering enough to leave the hospital.

“It is less likely to work when the cause of heart stopping is something you can’t fix to begin with,” such as terminal cancer, Blackhall said. “They are dying, and if they survive that 15 minutes, [the process of CPR] often breaks their ribs. They will end up in the ICU with a catheter, a tube down their throat and another one to feed them.”

Dialysis

When dialysis, which removes waste from the blood, was introduced in the 1940s, its purpose was to keep young people with acute renal failure alive until their kidneys began to properly function again.

Today, an estimated 650,000 people have end-stage renal disease, more than 70 percent of whom are on dialysis. The typical patient on dialysis is 65 years old, and the fastest-growing group is individuals who are older than 75. The treatment is used in approximately 90 percent of elderly people with end-stage renal disease, according to 2013 research in the journal Aging Health. Acute failure, particularly in young people, can be reversed, allowing them to live long, healthy lives. Dialysis, however, doesn’t cure end-stage renal disease.

Sharon Kaufman, author of “Ordinary Medicine: Extraordinary Treatments, Longer Lives, and Where to Draw the Line,” said this is another area where the default treatment may not be the best option for older patients.

“People aren’t ‘choosing’ dialysis — they are being directed toward what is available, and what is available is more,” said Kaufman, who chairs the department of anthropology, history and social medicine at the University of California at San Francisco. “Patients are not getting better; they are just hoping not to get worse.”

In many cases, dialysis does not lengthen the lives of older, frail patients. And even when it does, that extra time can be problematic. Researchers from the Johns Hopkins University School of Medicine found that frail, elderly dialysis patients had a 40 percent mortality rate after three years compared with a 16 percent rate for healthier patients receiving the treatment. This is, in part, due to the toll dialysis can take on the body.

A New England Journal of Medicine article from 2009 looked at more than 3,500 patients with end-stage renal disease starting dialysis in U.S. nursing homes. Researchers found that 39 percent retained kidney function three months after initiating treatment; but at 12 months, only 13 percent maintained it and more than half had died. The study authors concluded that dialysis in this patient population is associated with a “substantial and sustained decline in functional status.”

Patients do have a choice about undertaking dialysis, but Kaufman contends that the medical system makes it extremely hard to say no.

People are directed toward dialysis because of health care’s love of technology, its fee-for-service system and the specter of litigation hanging over hospitals that do not use all their resources to extend life, Kaufman said. Also, terminally ill patients often have a strong will to live, and they feel as though they are “choosing death” if they opt out.

Kaufman recounted the case of a physician friend with end-stage renal disease who opted out of dialysis, concluding that the hours attached to a machine and the treatment’s side effects — including fatigue, low blood pressure, blood poisoning and muscle pain — were not worth it. “Because he was a physician, he knew,” Kaufman said. “Doctors don’t want for themselves what they do for their patients, and that’s what patients need to know.”

Joseph Gallo, a professor at the Johns Hopkins Bloomberg School of Public Health, surveyed aging physicians about their thoughts on end-of-life treatments. When asked if they would want dialysis (given the scenario that they had a brain injury rather than a terminal illness), nearly 85 percent said they would turn down the treatment.

Feeding tubes

As dementia advances, people tend to be less interested in food. They become more likely to fight someone trying to feed them, choke when swallowing food or keep it balled up in their cheek instead of swallowing.

Feeding tubes are often used to bypass these issues. The idea is that the tubes provide nourishment to prolong life while avoiding aspiration pneumonia (where food goes into the lungs rather than the stomach) and decreasing the risk of pressure ulcers, a breakdown of the skin from something rubbing against it.

Nearly a third of the people in U.S. nursing homes with cognitive impairment at some point are given feeding tubes, according to a 2010 article in JAMA. But a recent study in the Archives of Internal Medicine found that feeding tubes didn’t reduce the chances of pressure ulcers among nursing home residents, and doctors say aspiration pneumonia still occurs when stomach contents back up into the esophagus and then into the lungs.

“It turns out that, at the point in time when people develop problems with chewing and swallowing and eating, their dementia is quite advanced and they don’t have a lot of time left anyway,” said Muriel Gillick, director of the program in aging at the Harvard Pilgrim Health Care Institute.But, she said, “it is hard to say to a family, ‘Your mom has trouble swallowing, so we are just not going to give her anything to eat anymore.’ Families want it because feeding someone we love is our way of nurturing and showing we care.”

Feeding tubes, like dialysis and CPR, are often provided in many health-care settings because patients and families aren’t offered alternatives that seem acceptable as the end approaches.

“What matters most is a person is comfortable . . . and I think generally we have ways to achieve this that don’t involve sticking tubes in people,” Gillick said. Ice chips can be offered to assuage thirst, and reading to people, holding their hands, keeping them warm and dry are all sustaining activities that improve quality of life. These things shouldn’t be thought of as “trivial or fluff,” she said.

“All of us are going to die,” Blackhall said. “The question should be how do we want to live — what do we actually want to do with that time? Let’s make sure that whatever time you have, you can do those things.”

Complete Article HERE!

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FBI: Owner Of Hospice Told Nurses To Overdose Patients To Speed Death

Frisco Hospice

The owner of a Dallas-area hospice ordered nurses to increase drug dosages for patients to speed their deaths and maximize profits, according to an FBI affidavit.

A copy of the affidavit for a search warrant obtained by KXAS-TV in Dallas-Fort Worth (http://bit.ly/1VTzfeh) alleges Brad Harris ordered higher dosages for at least four patients at Novus Health Services in Frisco. It’s unclear whether any deaths resulted from overdoses of drugs like morphine.

Harris has not been charged. The FBI on Wednesday declined to say whether an investigation is ongoing.

The warrant refers to an FBI raid on the hospice in September. It alleges Harris sent text messages to workers such as, “You need to make this patient go bye-bye.” On another occasion, Harris told administrators during a lunch meeting that he wanted to “find patients who would die within 24 hours.”

In at least one instance, an employee refused to follow orders to increase a dosage, the warrant said.

The document explains that federal reimbursements can diminish the longer a patient receives care. A provider eventually can be forced to return federal payments.

A woman who answered the phone Wednesday at Novus declined to comment. Attempts to reach Harris for comment on Wednesday were unsuccessful. A working number for him could not be found; listings for a Brad Harris in the Dallas and Houston areas had either been disconnected or turned out not to be his. The Associated Press also sent a request for comment to two email addresses believed to be his.

Harris, 34, is an accountant who founded Novus in 2012, according to KXAS, citing state records.

Novus’ website says the company offers hospice and home health care services.

The FBI investigation of Novus, which included interviewing several employees, began in 2014 and initially focused on allegations that the company sought federal reimbursements for patients recruited by Novus who didn’t qualify for services, according to KXAS.

Complete Article HERE!

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“Hospitals are not a good place to die”

End-of-life doula Anna Lyons on why we need to rethink our attitudes to death

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holding hands

I’ve been with the dying many times, both in a personal capacity and as a health care professional. As an end-of-life doula my work is centred around supporting people and their families at end of life. My experiences have led me to agree wholeheartedly with the BMA in its recent report: hospitals are not the best place to die.

An overwhelming majority of us want to die at home, yet statistics show the reality is that 54% of us will die in hospital. But in my opinion, hospices are for the dying. Home is for the dying. Hospitals are not. The raison d’etre of end of life care is to help people experience a ‘good death’. We will remember how someone we love dies forever. The impact of a bad death is far-reaching. Candy Chang, creator of the ‘Before I Die‘ wall, a global art project that invites people to reflect on their lives and share their personal aspirations on a public wall, describes the fallout as creating ‘circles of mayhem’ for generations.

What is a good death?

Every person will have a different idea about what would constitute a good death for themselves or their family. Much of the debate over end-of-life care comes down to two questions:

  1. Is a good death one where the medical team did everything to save a life?
  2. Is this still true if there is little chance or no of a happy outcome?

Culturally, we have always seen a good death as one we have ‘fought’ against. It may be time to consider otherwise. Many treatments are aggressive and futile, robbing the last remaining quality of life a patient has.

Perhaps a good death is the accepted one. One where the dying person is in control, can be at home, can have their pain and symptoms managed. End of life care must be entirely individualised and person-centred, only then can we begin to offer the excellent end of life care that everyone deserves.

when-hospitals-go-wrong

The refusal of a medical team to end active treatment to the detriment of the patient was exemplified in the death of a very close friend of mine. They threw everything they had at giving him longer than his twenty-something years. They didn’t give up ‘actively’ treating him until the end. He died clinging to the belief that he was going to live. That last precious year of his life was a tragic mess of chemotherapy, life-prolonging operations and colourless hospital wards. The treatment had destroyed the very essence of who he was, long before his heart played out its final beats.

I believe if we discussed end of life issues regularly, we wouldn’t find them so tricky to broach. Issues about death and dying should be taught in schools as part of the PSHE syllabus from primary and onwards. During Year 13 tutor time when we teach young adults to fill in job application forms, we should also be filling in advance directives with them.

Issues with control at the end

In a study by the Economist Intelligence Unit, the UK was crowned the best in the world for provision of end-of-life care. The author of the report, however, said that there is room for improvement, especially in symptom control and communication. Could this improvement be guided not by government policy or hospital administration, but by changing the way we look at death?

The recent BMA report concluded that some doctors continue to treat the dying when active treatment is no longer of any benefit. One reason it suggested was because of pressure from the patient and their loved ones. This is understandable – it is often too difficult to let go of the ones we love. The report also stated it is because if doctors acknowledge there’s nothing more that can be done, that they’re admitting defeat.

chemotherapy

I knew a woman worked with the dying so when she was dying, although she knew there was nothing that could be done, she didn’t want to die. She wasn’t ready: she had a life to lead, a world to see and children to watch grow and guide. She was looked after by the same medical team she had worked alongside for many years. They couldn’t let her die either. If they let her die, they would have failed one of their own. They had to try, even though they knew it was futile. They couldn’t give up, even though they knew the treatment she would most likely shorten her life, not extend it. Her original prognosis with palliative care had given her up to a year. She died two weeks into aggressive treatment, four weeks after her initial diagnosis.

We should not see the death of a dying patient as a failure. Death is not the loss of a battle. Death is a natural part of life. If we could see it that way, we might be able to approach it differently. Our goal should be helping someone live as good a life as possible right up until the very end. No one will ever experience a “good death” if our focus is active treatment at all costs.

senior woman

The report set out that treatment at end-of-life should be ‘appropriate and proportionate’. Dying with care, deference and dignity, and on our own terms is the very least we should be able to offer. A lady I worked with lived an incredibly full life: alone and happy. She went dancing and played snooker. She cooked everything from scratch everyday. Her breathlessness became untenable and she finally went to the doctor. She had cancer, which was slow to progress even though she chose a palliative care pathway. She accepted her life-limiting prognosis with the wisdom of one who knew herself well and contemplated mortality more often than many. She died in a hospice, surrounded by her family. Hers was a peaceful death. Peaceful and on her own terms.

One aspect of the report that I feel most strongly about is that doctors should be receiving training and CPD on communication and how best to have difficult conversations. One junior doctor who was interviewed for the report said: “I found it very difficult to talk to patients about dying, prior to working in a hospice, because…as a junior doctor we’re not taught very much…”

A shift in thinking

We all have to take responsibility for communication and the decisions we make. It’s terribly difficult when we’re unwell and vulnerable to hear these truths. If we’ve never considered end-of-life until our own life’s end it’s no wonder we find it so hard. If we discussed these issues regularly we wouldn’t find them so hard. We need to break down the ingrained cultural barriers that prevent us from talking about death and dying

Let’s all take on that responsibility. Let’s talk about it: openly and without fear. It’s too much to have that conversation for the first time when we are facing death. It’s much easier to talk about it while we’re living a healthy life.
We need to ask ourselves what is a good death for us.

Why do we value quantity over quality of time? Why do we cling so dearly to the notion that a life well lived is the longest? Sometimes doing nothing is the most courageous path. Sometimes accepting there’s nothing left that can be done is the bravest choice. Some may describe such a decision as “giving up”. Pursuing treatment until the very end, on the other hand, is lauded as “being a fighter”.

doctor and patient

Do these words,”battle” and “fight”, compound medical teams’ feelings of failure when an unavoidable and imminent death is in front of them? Changing our language may help us to change the way we think. Illness and death are a part of life. Loss is not a failure: not ours, and not our doctors’. Perhaps redesigning our expectations and language at end of life could begin with Paul Kalanithi’s beautiful words:“The physician’s duty is not to stave off death or return patients to their old lives, but to take into our arms a patient and family whose lives have disintegrated and work until they can stand back up and face, and make sense of, their own existence.” If they did, I believe death and dying could be a richer and better experience for everyone involved.

Complete Article HERE!

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In Palliative Care, Comfort Is the Top Priority

By Paula Span

Palliative Care

Last year, when an oncologist advised that Betty Chin might benefit frompalliative care, her son Kevin balked.

Mrs. Chin, a retired nurse’s aide who lives in Manhattan’s Chinatown, was undergoing treatment for a recurrence of colorectal cancer. Her family understood that radiation and chemotherapy wouldn’t cure her, but they hoped doctors could keep the cancer at bay, perhaps shrinking her tumor enough to allow surgery or simply buying her more time.

Mrs. Chin, 84, was in pain, fatigued and depressed. The radiation had led to diarrhea, and she needed a urinary catheter; her chemotherapy drugs caused nausea, vomiting and appetite loss.

Palliative care, which focuses on relieving the discomfort and distress of serious illness, might have helped. But Mr. Chin, 50, his mother’s primary caregiver, initially resisted the suggestion.

“The word ‘palliative,’ I thought of it as synonymous with hospice,” he said, echoing a common misperception. “I didn’t want to face that possibility. I didn’t think it was time yet.”

In the ensuing months, however, two more physicians recommended palliative care, so the Chins agreed to see the team at Mount Sinai Hospital.

They have become converts. “It was quite a relief,” Mr. Chin said. “Our doctor listened to everything: the pain, the catheter, the vomiting, the tiredness. You can’t bring up issues like this with an oncologist.”

Multiple prescriptions have made his mother more comfortable. A social worker helps the family grapple with home care schedules and insurance. Mr. Chin, who frequently translates for his Cantonese-speaking mother, can call nurses with questions at any hour.

Challenges remain — Mrs. Chin still isn’t eating much — but her son now wishes the family had agreed to palliative care earlier.

Perhaps it’s not surprising that many families know little about palliative care; it only became an approved medical specialty in 2007. It has grown rapidly in hospitals: More than 70 percent now offer palliative care services, including 90 percent of those with more than 300 beds.

But most ailing patients aren’t in hospitals, and don’t want to be. Outpatient services like Mount Sinai’s have been slower to take hold. A few hundred exist around the country, estimates Dr. Diane Meier, who directs the Center to Advance Palliative Care, which advocates better access to these services.

Dr. Meier said she expects that number to climb as the Affordable Care Act and Medicare continue to shift health care payments away from the fee-for-service model.

Because most people with serious illnesses are older, seniors and caregivers should understand that palliative care offers more care as needed, not less. Unlike hospice, patients can use it at any point in an illness — many will “graduate” as they recover — without forgoing curative treatment.

Like hospice, however, palliative care focuses on quality of life, providing emotional and spiritual support for patients and families, along with drugs and other remedies to ease symptoms. Its practitioners help patients explore the complex medical decisions they often face, then document their preferences.

It pays off for patients and families. In 2010, a randomized trial of 151 patients with metastatic lung cancer at Massachusetts General Hospital found that those who received early palliative care scored significantly higher on quality of life measures than those receiving standard care, and were less likely to suffer from depression.

They were also less likely to get aggressive end-of-life treatment like chemotherapy in their final weeks. Yet they survived several months longer.

Other studies have found similar benefits. Compared with control groups, palliative care patients get greater relief from the breathlessness associated with lung diseases; they’re less likely to spend time in intensive care units; they report greater satisfaction with care and higher spiritual well-being.

And they do better if they seek palliative care early. A new study conducted at the cancer center at the University of California, San Francisco, found that of 922 patients who had died, most in their 60s and 70s, those who had received palliative care for 90 days or more were less likely to have late-life hospitalizations and to visit intensive care units or emergency rooms than those who sought care later.

The reduced hospital use also saved thousands of dollars per patient, a bonus other studies have documented.

“If people aren’t in excruciating pain at 3 a.m., they don’t call 911 and go to the emergency room,” Dr. Meier pointed out.

Yet palliative care remains underused. Even at the well-established U.C.S.F. cancer center, which began offering the service in 2005, only a third of patients in the study had received a palliative care referral.

“We hear this all the time: ‘They’re not ready for palliative care,’ as if it’s a stage people have to accept, as opposed to something that should be a routine part of care,” said Dr. Eric Widera, who practices the specialty at the university.

In fact, the cancer center at U.C.S.F. adopted a euphemistic name for its palliative team: “the symptom management service.”

“We deliberately called it that because of how much ignorance or confusion or even bias there was against the term ‘palliative care,’” said Dr. Michael Rabow, director of the service and senior author of the new study.

Although 40 percent of their palliative care patients can expect to be cured, “there clearly still are both patients and oncologists who have an inappropriate association in their minds,” he said. “They still associate palliative care with giving up.”

To the contrary, palliative care can help patients live fully, regardless of their prognoses. Consider Herman Storey, a 71-year-old San Franciscan, an Air Force veteran, a retired retail buyer and manager, a patient who feels quite well despite a diagnosis of inoperable liver cancer.

His oncologist at the San Francisco V.A. Medical Center — the Department of Veterans Affairs has been a leader in this specialty — referred him to the palliative care service last fall when Mr. Storey said he didn’t intend to pursue chemotherapy.

“They wanted me to reconsider,” Mr. Storey said, “but I don’t want to get sick and tired of being sick and tired.” Chemotherapy for a previous bout of cancer had helped him survive for three years; it had also made him very ill.

Dr. Barbara Drye, medical director of outpatient palliative care at the cancer center, walked Mr. Storey through his options. The suggested chemo might extend his life by several months, she explained. It would also take a toll.

“It can cause not only nausea and diarrhea, but it affects your taste,” she said. “Food tastes like cardboard. Fatigue can markedly decrease the amount of activity someone can do.”

This time, Mr. Storey decided against treatment. A skilled cook, proud of the duck confit dinner he served guests at Christmas, he wants to continue to enjoy cooking and dining out with friends.

Besides, he has plans: In May, he expects to visit Paris for the 11th time, to mark his 72nd birthday.

Dr. Drye, who helped Mr. Storey complete his advance directives, will arrange for home or inpatient hospice care when he needs it. Until then, she sees him monthly.

She has gently suggested that he take his trip a bit earlier; he has declined. “I feel great,” he told me.

So this is also life with palliative care: Mr. Storey and a companion have rented an apartment near the Place des Vosges. A Parisian friend will throw a dinner party for him, as usual. And he’ll eat at that little Alsatian restaurant where they always remember him.

Complete Article HERE!

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Candidates avoid the aid in dying debate, but it’s time to start talking about it

Since physiological support like respirators and defibrillators made it possible to prolong life, prolonging death has fueled a more subtle conversation

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With an aging population and state-by-state legislation creeping along, aid in dying is not a discussion national politicians should avoid.
With an aging population and state-by-state legislation creeping along, aid in dying is not a discussion national politicians should avoid.

Several factors have made politicians, particularly at the national level, reluctant to wade into the aid-in-dying conversation. Catholic leaders and their evangelical “pro-life” allies have eviscerated any politician willing to discuss aid in dying, shutting down dialogue and branding advocates as “pro-death”. By claiming to represent American religions, these vocal opponents have bifurcated the issue along political lines, all but silencing those who are religious but disagree.

Yet a conversation is taking place, with or without the presidential candidates. Since the 1970s, when physiological support, like respirators and defibrillators, made it possible to prolong life, prolonging death has fueled a more subtle conversation about what medical decisions patients and their families can make. Aid in dying is now approved by 68% of Americans, a number that rose by a striking 10 points in the course of a year, according to a Gallup poll conducted in May 2015. It’s now legal in five states with at least a dozen more considering bills or legislation.

Still, the issue was absent from the presidential race until a terminal cancer patient finally asked a question last week. Jim Kinhan, an 81-year-old with a face as rosy as his sweater, asked Hillary Clinton at a New Hampshire town hall meeting on 3 February about her position on the legalization of aid in dying.

“I wonder what leadership you could offer within an executive role that might help advance the respectful conversation that is needed around this personal choice that people may make, as we age and deal with health issues or be the caregivers of those people, to help enhance and – their end of life with dignity.” His voice was raspy, his question respectful. The Washington Post reported that Clinton “looked a bit nervous”. After a slight pause and some careful word selection, Clinton failed to take a position.

Republican candidates have also been silent about aid in dying, but it’s difficult to imagine anyone in the current conservative field will step away from the Republican party platform as they vie for traditionally Republican social conservatives. The campaign of Jeb Bush and his role in the Terri Schiavo case have even worked against the cause, helping to refresh patient concerns regarding autonomy in a way that defies party lines and past reticence.

But, unlike the fight to end abortion, which has (wrongly) focused on women’s sexual decisions and succeeded in shaming female medical choices, aid in dying is an issue that addresses male choice. That gender difference – and the fact that Republican voters skew older than Democrats – could catch up with the party and its candidates in the future. Republicans would do well to pay attention.

New Hampshire, where Kinhan lives, is home to one of the oldest populations in the country, and legislators there have tried twice in the past to establish study committees. Both times governor Maggie Hassan has vetoed the proposals. This year, as Hassan prepares to leave office, a Concord senator has tried again, introducing SB 426. It’s spurring the kind of dialogue in the state that Kinhan was hoping Clinton’s national campaign could get behind.

In the past, the very terms used to describe aid in dying have proven controversial. For more than a decade, polls showed that approval ratings depended on how questions about aid in dying were asked. If the term “assisted suicide” was used when polling, those willing to claim support for the laws were fewer. But that has begun to change; voters, exposed to repeated state-level conversations about aid in dying, and who now see that the laws have succeeded in the “laboratory of the states”, have come to understand that “assisted suicide” is not “suicide”. It is not something our culture should be united in preventing.

In an op-ed for the Concord Monitor at the end of January, Kinhan addressed the contrast between aid in dying and suicide. “The transparency and shared process of end-of-life choice is in strong contrast to the behavior known as suicide,” he wrote, emphasizing the difference between choosing not to suffer from a terminal disease and choosing to end one’s life out of despair.

“This choice is not dark and secretive,” Kinhan continued. “Personally, it rings loudly and joyfully of my readiness for what lies ahead and for thankfulness for what life has gifted me.”

Compassion & Choices, the nation’s largest aid in dying organization, has announced a call for questions for candidates. They will host an event on 17 February that gives voice to seniors who have concerns about end-of-life care. Hopefully candidates will realize what Kinhan and the movement to legalize aid in dying have shown: it’s time for a national conversation.

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