Researchers explore how people with Alzheimer’s disease use end-of-life medical services


Because people are now living longer and often healthier lives, the rate of some illnesses that are more likely to develop with age has risen. These illnesses include dementia. In fact, the number of us living with dementia was already 47 million worldwide in 2015. It could reach 131 million by 2050.

Dementia is a general term that includes different types of mental decline. The most common type of dementia is Alzheimer’s disease, which accounts for 60 to 80 percent of all dementia cases.

As Alzheimer’s disease worsens, older adults may become more likely to have trouble performing daily activities, can develop trouble swallowing, and may become less active. This increases the risk for other concerns like infections. These infections, such as pneumonia, can increase the risk for death. As a result, the cause of death for people living with Alzheimer’s disease is often infections or some other cause, rather than the Alzheimer’s disease itself.

A team of researchers from Belgium recently studied how people with Alzheimer’s disease use medical services during their final months. The goal was to learn more about the best ways to help older adults with dementia at the end of their lives. Their study was published in the Journal of the American Geriatrics Society.

The researchers studied information from people with Alzheimer’s disease living in Belgium who died during 2012. They compared two groups of people who were diagnosed with Alzheimer’s disease.

One group had death certificates that listed Alzheimer’s disease as the cause of death. This was the group who died because of Alzheimer’s disease.

The second group included individuals diagnosed with Alzheimer’s disease but with death certificates that listed another cause of death (like infections). This was the group who died with Alzheimer’s disease (but not of Alzheimer’s disease).

The researchers looked at the healthcare resources the two groups used in the last six months of life.

Of the more than 11,000 people in the study, 77 percent had something other than Alzheimer’s disease listed as the cause of death on their death certificate while 22 percent died of Alzheimer’s disease. The average age of these individuals was 85, and most were women.

People who died with Alzheimer’s disease were more likely to have at least one hospital admission and more intensive care unit (ICU) stays. People in both groups had about 12 visits with a doctor during the last six months of their lives.

However, the people who died with Alzheimer’s disease received fewer palliative care services. Palliative care helps keep us comfortable when we are near death or dealing with a serious illness. This included fewer palliative home care services during the last six months of their lives. They also spent fewer days in a nursing home.

People in the study whose cause of death was listed as something other than Alzheimer’s disease were also more likely to have invasive procedures compared to people who died of Alzheimer’s disease. These invasive procedures included being put on breathing machines and being resuscitated (the medical term for reviving someone from unconsciousness or apparent death).

The researchers concluded that older adults whose cause of death was Alzheimer’s disease used fewer healthcare resources than people whose cause of death was listed as something else even though they had been diagnosed with Alzheimer’s disease. The researchers suggested that recognizing late-stage Alzheimer’s disease as an end-of-life condition could influence healthcare providers to use more palliative care resources and fewer invasive procedures.

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Veteran? Terminally Ill? Want Death With Dignity? That Could Get You Evicted.


By JoNel Aleccia

California voters passed a law two years ago that allows terminally ill people to take lethal drugs to end their lives, but controversy is growing over a newer rule that effectively bans that option in the state’s eight veterans’ homes.

Proponents of medical aid-in-dying and residents of the Veterans Home of California-Yountville — the largest in the nation — are protesting a regulation passed last year by the California Department of Veterans Affairs, or CalVet, that requires that anyone living in the facilities must be discharged if they intend to use the law.

That’s a position shared by most — but not all — states where aid-in-dying is allowed. As more U.S. jurisdictions consider whether to legalize the practice, the status of terminally ill veterans living in state-run homes will loom large.

“It would be a terrible hardship, because I have no place to go,” said Bob Sloan, 73, who suffers from congestive heart failure and other serious cardiac problems. He said he intends to seek medical aid-in-dying if doctors certify he has six months or less to live.

“I’m not going to be a vegetable,” said Sloan, a Vietnam War-era veteran who moved into the Yountville center five years ago. “I’m not going to end up living in so much pain it’s unbearable.”

A CalVet official said the agency adopted the rule to avoid violating a federal statute that prohibits using U.S. government resources for physician-assisted death. Otherwise, the agency would jeopardize nearly $68 million in federal funds that helps run the facilities, said June Iljana, CalVet’s deputy secretary of communications.

California is not alone. Three other states where aid-in-dying is legal — Oregon, Colorado and Vermont — all prohibit use of lethal medications in state-run veterans’ homes.

In Montana, where aid-in-dying is allowed under a state Supreme Court ruling, officials didn’t respond to multiple requests about whether veterans would be able to use the law in the residences. However, Dr. Eric Kress, a Missoula physician who prescribes the lethal medication, says he has transferred patients to hospice, to relatives’ homes, even to extended-stay hotels to avoid conflict.

In Washington, D.C., where an aid-in-dying law took effect last summer, the Armed Forces Retirement Home won’t assist patients in any way. Those who wish to use the law would be referred to an ethics committee for individual consideration, spokesman Christopher Kelly said in an email.

Only Washington state has a policy that allows veterans to remain in government-run residences if they intend to ingest lethal medications.. At least one veteran has died in a state-run home using that law, said Heidi Audette, a spokeswoman for the state’s Department of Veterans Affairs.

Paul Sherbo, a spokesman for the U.S. Department of Veterans Affairs, said the choice is up to the states.

“VA does not mandate how states comply with federal law,” Sherbo said in an email. “There are a number of ways individual states can choose to handle such situations and still be in compliance.”

To date, none of the 2,400 residents of California’s veterans homes has formally requested medical aid-in-dying, said Iljana. That includes the more than 900 residents of the Yountville center, located about 60 miles north of San Francisco.

“We would respectfully and compassionately assist them in transferring to a hospice, family home or other location,” Iljana said in an email. “We will readmit them immediately if they change their minds.”

But Kathryn Tucker, executive director of the End of Life Liberty Project, an advocacy group that supports aid-in-dying, said that CalVet is interpreting the federal regulations too broadly and denying terminally ill veterans the right to choose a “peaceful death” through medical assistance.

“Nothing exists in the federal statute’s language that would prohibit a resident from receiving aid-in-dying services at state homes, so long as they are not provided using federal funds or employees,” she said.

Ed Warren, head of the Allied Council, a group representing veterans at the Yountville site, co-signed a letter to CalVet officials protesting the ruling.

“My point of view is that it is inhumane to expect people in the last stages of dying to go through the hullabaloo of leaving their homes,” he said.

In Washington state, a 60-year-old man diagnosed with terminal chronic obstructive pulmonary disease, or COPD, died in June 2015 after ingesting lethal drugs at the Washington Soldiers Home in Orting, where he lived.

“It was all done very much in the open,” said Chris Fruitrich, a volunteer with the group End of Life Washington, which assisted the man.

There has been no indication that the policy jeopardizes the nearly $47 million the agency receives each year in federal funds, said Audette, the state VA spokeswoman.

In California, additional protests have centered on allegations that CalVet suppressed information about the aid-in-dying law.

Critics at the Yountville home contend that CalVet passed the discharge rule quietly, with little public input. Then the agency refused to broadcast a public meeting about medical aid-in-dying on KVET, the center’s state-run, closed-circuit television station.

Iljana said the Aug. 21 meeting, led by Tucker and Dr. Robert Brody, also a supporter of aid-in-dying, violated state rules that prohibit using public resources to promote political causes.

“Free speech is great and criticizing the government is great, but not using the government’s own resources and paid staff to advocate for a change in the law,” Iljana wrote in an email to prohibit the broadcast.

That decision, however, prompted Jac Warren, 81, who has been KVET’s station manager for eight years, to resign last month in protest, citing censorship.

“What is at issue is whether a state may completely suppress the dissemination of concededly truthful information about entirely lawful activity,” Warren wrote in an email to CalVet.

The hour-long meeting, attended by about 50 people, was not propaganda, Tucker said, but “an educational event with information provided by an attorney and a physician who both specialize in their respective fields in end-of-life care.”

Bob Sloan, who works as an engineer at KVET for a $400 monthly stipend, disagreed with the decision not to broadcast the meeting on the system that serves residents of the Yountville home.

Sloan said he knows other residents who would like to be able to use California’s aid-in-dying law if their illnesses progress.

“The only other option that people have in this state is committing suicide,” he said. “If I can’t find some way of doing it legally, I’ll do it illegally.”

Complete Article HERE!


Cannabis softens landing for ailing seniors


A tincture brought relief to 92-year-old Raymond Hayley, which also made things a little easier for his son and caretaker, William

Raymond Hayley enjoyed a day trip to Granville Island with his son, Will, in June 2017.

Before passing away suddenly in September 2016, Doreen Hayley made her son swear not to put his father, Raymond, in a care home.

The “normal bachelor life” William Hayley had been living in Vancouver was about to come to a halt: with his mother gone and his 92-year-old father suffering from Parkinson’s disease, he was thrown into the position of caretaker without an instruction manual.

At the time, he had no idea how big a role cannabis would play in easing his father into the final stage of life.

Among Raymond’s favourite places to take in the sights and sounds of Vancouver were the docks of Granville Island. It was there on a summer day in late June that the Straight first met the Hayleys.

Diagnosed with Parkinson’s disease in his 70s, Raymond had spent the better part of 20 years suffering from the degenerative disorder that caused uncontrollable shaking and rigidity. As it progressed, Parkinson’s came with its own brands of dementia and anxiety, and Raymond would experience a symptom called “sundowning” almost daily.

Each afternoon like clockwork, William said, his father’s agitation and confusion became otherworldly.

“He’d get into these states—the closest thing I could relate it to is a possession,” he said. “The look on his face would change, things didn’t make sense to him; he would moan, and sometimes he’d hit himself or a chair.”

With his father waking up hourly, sleep escaped William, too. Their health suffered, and William developed anemia as Raymond’s condition deteriorated.

At his wits’ end and with no option from doctors but powerful antipsychotics, William watched a Facebook video of a man with Parkinson’s disease whose tremors subsided after he took Phoenix Tears, a highly concentrated cannabis extract.

“I thought, ‘Rather than having him come to this terrible crashing end like a plane cartwheeling down a runway, what if we could soften the landing for him?’ ”

William consulted with his father’s physician before visiting local dispensary the Village Bloomery, where he opted for a four-to-one CBD-to-THC tincture, a ratio that would minimize psychoactivity while decreasing anxiety. He said the effects on his father were almost immediate.

“Within 30 minutes, he went from eating cookies to stacking them up and building with them. He was calm, he wasn’t moaning, and he wasn’t shaking,” William remembered.

He also said that when the tension in Raymond’s body stopped, it opened the doorway to sleep—something he hadn’t done for more than 40 minutes at a time in almost five years.

“All of a sudden, six hours became eight, and eight became 10,” William said. With his father able to sleep, William could do the same. Physically, Raymond had some control of his body back, and mentally, the symptoms of his dementia began to subside, according to William. He added that the sundowning stopped and there was light in his eyes again.

“I’ve got it down to a routine where I put it in his dentures,” William said as we circled Granville Island. “He likes it, he wants it, and he knows that it’s working.”

Raymond passed away peacefully in his son’s arms on August 21, 2017. Today, William says that not only did cannabis give him his father back; it gave his father the ability to grieve, something dementia had robbed him of.

“He was married for 69 years—some people don’t live that long,” William said in a follow-up interview. “When he became lucid enough to realize his situation, that his wife had passed away and everything was gone, he was actually able to grieve. At least with cannabis, I could talk to him about it.”

It’s the type of bittersweet story known well by Selena Wong, a Vernon-based cannabis consultant who specializes in end-of-life care.

Calling cannabis her “saving grace”, Wong said that when she realized that cannabis could have value for her grandparents, it was a game changer. But she noted that there are a few things to consider when administering cannabis to an elderly person.

“I’m really mindful that the people I work with have a positive experience with cannabis,” she said. “Seniors are people, and just like you and I want to know what we’re taking, so do they.”

Topical lotions or CBD products are good starting points, she said, because they won’t cause euphoria. A tincture is also a great option for seniors who might have trouble swallowing capsules.

“Because of the conditioning they’ve experienced, it helps them to reframe that relationship with the plant without having a negative experience.”

Looking back, William says that without cannabis, he’s not sure how well he would have coped with his father’s illness, but he’s happy to have kept his promise to his mother.

“A year is a long time to give up,” he says, “but I’d give $10 million just for another 10 minutes with him.”

Complete Article HERE!


This Was Not the Good Death We Were Promised


When my father was dying of pancreatic cancer last summer, I often curled up with him in the adjustable hospital bed set up in his bedroom. As we watched episodes of “The Great British Baking Show,” I’d think about all the things I couldn’t promise him.

I couldn’t promise that the book he’d been working on would ever be published. I couldn’t promise he would get to see his childhood friends from England one more time. I couldn’t even promise he’d find out who won the baking show that season.

But what I could promise — or I thought I could — was that he would not be in pain at the end of his life.

That’s because after hearing for years about the unnecessary medicalization of most hospital deaths, I had called an in-home hospice agency to usher him “off this mortal coil,” as my literary father still liked to say at 83.

When a doctor said my father had about six months to live, I invited a hospice representative to my parents’ kitchen table. She went over their Medicare-funded services, including weekly check-ins from a nurse and 24/7 emergency oversight by a doctor. Most comfortingly, she told us if a final “crisis” came, such as severe pain or agitation, a registered nurse would stay in his room around the clock to treat him.

For several months, things went well. His primary nurse, who doubled as case worker, was kind and empathetic. A caretaker came three mornings a week to wash him and make breakfast. A physician assistant prescribed drugs for pain and constipation. His pain was not terrible, so a low dose of oxycodone — the only painkiller they gave us — seemed to suffice.

In those last precious weeks at home, we had tender conversations, looked over photographs from his childhood, talked about his grandchildren’s future.

But at the very end, confronted by a sudden deterioration in my father’s condition, hospice did not fulfill its promise to my family — not for lack of good intentions but for lack of staff and foresight.

At 7 p.m. on the night before my father’s last day of life, his abdominal pain spiked. Since his nurse turned off her phone at 5, I called the hospice switchboard. To my surprise, no doctor was available, and it took the receptionist an hour to reach a nurse by phone. She told us we should double his dose of oxycodone, but that made no difference. We needed a house call.

The only on-call nurse was helping another family two hours away. So my sister and I experimented with Ativan and more oxycodone, then fumbled through administering a dose of morphine that my mother found in a cabinet, left over from a past hospital visit. That was lucky, because when the nurse arrived at midnight, she brought no painkillers.

After the nurse left, my father’s pain broke through the morphine. I called the switchboard again, and it took three hours for a new nurse to come. She was surprised he hadn’t been set up with a pump for a more effective painkiller. She agreed that this constituted a crisis and should trigger the promised round-the-clock care. She made a phone call and told us the crisis nurse would arrive by 8 a.m.

The nurse did not come at 8 a.m. Or 9 a.m. When his case worker was back on duty, she told us — apologetically — that the nurse on that shift had come down with strep throat. Her supervisor stopped by, showed us the proper way to deliver morphine (we’d been doing it wrong) and told us a pain pump and a crisis nurse should arrive by noon.

Noon passed, then 1 p.m., 2 p.m. No nurse, no pump.

By this time, my father had slipped into a coma without our noticing; we were thankful his pain was over but heartbroken he wouldn’t hear our goodbyes. Finally, at 4 p.m., the nurse arrived — a kind, energetic woman from Poland. But there was little left to do. My father died an hour later.

At the end of life, things can fall apart quickly, and neither medical specialist nor hospice worker can guarantee a painless exit. But we were told a palliative expert would be at my father’s bedside if he needed it. We were not told this was conditional on staffing levels.

I didn’t realize how common our experience was until a few months after his death, when two reports on home hospice came out — one from Politico and one from Kaiser Health News. According to their investigations, the hospice system, which began idealistically in the 1970s, is stretched thin and falling short of its original mission.

Many of the more than 4,000 Medicare-certified hospice agencies in the United States exist within larger health care or corporate systems, which are often under pressure to keep profit margins up.

Kaiser Health News discovered there had been 3,200 complaints against hospice agencies across the country in the past five years. Few led to any recourse. In a Medicare-sponsored survey, fewer than 80 percent of people reported “getting timely care” from hospice providers, and only 75 percent reported “getting help for symptoms.”

I called Edo Banach, the president of the National Hospice and Palliative Care Organization, to get the trade group’s response. He expressed sympathy for my father’s suffering but was adamant that good hospice experiences “far outweigh” the negative ones.

Granted, more than a million Medicare patients go into hospice care every year, so the complaints are in the minority. Mr. Banach told me he’s worried that drawing attention to what he called the “salacious” stories of failed hospice care means more families will turn to less holistic, less humane end-of-life care. That could be true. But then, should there be more transparency early on? Should the hospice reps explain that in most cases, someone will rush to your loved one’s side in a crisis, but sometimes the agency just doesn’t get the timing and the logistics right?

As the number of for-profit hospice providers grows, does that model provide too great an incentive to understaff nighttime and weekend shifts? The solution may have to come from consumer advocacy and better regulation from Medicare itself.

A new government-sponsored website called Hospice Compare will soon include ratings of different agencies, which will ideally inspire some to raise their game. When I looked up the agency we had used, its customer satisfaction rate for handling pain — based on the company’s self-assessment — was 56 percent.

I considered making a complaint in the days after my dad’s death, but frankly we were just too sad. Even now, I believe hospice is a better option than a sterile hospital death under the impersonal watch of shift nurses we’d only just met. But I wonder whether that hospital oversight might have eased my father’s pain earlier on that last day.

Ultimately, even without pain relief, he was probably more comfortable in his own home, tended by his children, doing our best.

But then I think: He deserved to have both.

Complete Article HERE!


‘It’s all about making this better’


In the season of giving, hospice grants patients’ end-of-life wishes

From left, Deborah Holmes, Leslie White and Lisa Price work with patients of all ages at Seasons Hospice. Their job is to provide comfort and love to a person in his or her last days, weeks and even months.


Deborah Holmes adjusted her glasses, eyes watering as she glanced up at the ceiling of Seasons Hospice’s family room.

“I’m glad I didn’t wear mascara again today, though none of us [nurses] do much because we cry so often,” she said, smiling as her voice cracked. “I’ve almost given up wearing glasses they fog up so much too.”

Steadying her voice, Holmes laughed — a mixture of sadness, humor and joy.

Though the holiday season is often thought of as an especially important time for giving and making wishes come true, for Holmes and her fellow employees at Seasons Hospice, every day is an important time to grant wishes to their patients, the overwhelming majority of who are dying.

Unlike hospitals, which mainly focus on curative measures for patients — even those who are terminally ill — hospices are intended to provide comfort and love to a person in his or her last days, weeks and even months.

Hospice workers give the gift of dignified end-of-life care daily, holiday season or not, Holmes said, which she added is the most rewarding part of her job.

“Seeing those patients be free of those acute symptoms — to not be writhing in pain, to have that hospice success, to see them share laughs and hugs and things with their grandchildren and their own children — that’s the best,” she said.

“At night when I lay down — and it’s me and God, that’s who I deal with — knowing that that family member made it for their son to come home from the military, for that nephew to come in from out-of-state, for that patient to have their cat on their lap or for them to eat lunch without their oxygen because that’s what they want to do and they don’t care how low their stats drop, it’s those things, just making sure they have what they need, that’s my measure of success.”

The success varies from patient to patient, though, who range in age anywhere from 18 to 98.

“We do get very young patients; usually 18 years old and up, though we do get a lot of 30s, a lot of early 40s and 50s [and] a lot of 60s,” Holmes said. “Usually, cancer is the culprit, unfortunately, and those are especially hard because the [patients] generally have young families and their parents are still with us a lot of times. To have that parent experience the loss of their child at such an early age is absolutely devastating.”

As she continues, Holmes’ smile fades, sadness beginning to cloud her coffee-colored eyes.

“I’ll be honest,” she said. “In my 25 years of nursing, fortunately and unfortunately I’ve been involved in quite a number of situations where you do kind of go numb after a while. When I meet these family members, too, they don’t know what hospice is and I think it’s because there’s not a lot of talk in the community about hospice.

She added: “We’re not here to take anybody’s lives; we’re here to enhance the time that is left, so I do comedy with them. I may crack a little joke and I kind of develop a little joke with each and every family member or patient and that’s what I keep thinking about. It just brings a smile to my face because you know that was a connection that you made with those people.”

It’s the connections, too, that hospice employees make with one another that lighten the nurses’ daily burdens, as well as family, friends and pets.

In Bulldog country, the University of Georgia’s recent SEC championship and the team’s January trip to Pasadena, Calif., where they’ll challenge No. 2 seed Oklahoma in the Rose Bowl Game, also helps, Holmes said.

Lisa Price, one of the facility’s social workers, smiled, half-whispering ‘Go Dawgs’ as Holmes paused, mid-sentence.

“That’s the thing about it,” Price interjected. “We’re a big team and none of us could do our job without the others and the families, too. We have a good social and psych support here, and we’re a team.”

That team is part of what keeps Holmes coming back to work every morning, good days and bad. Her patients, too, make the job worth it.

And, at the end of the day, Holmes said she also knows she can turn on her radio, cued to a Pandora comedy station, and just laugh.

“I have a really good sense of humor; I love to laugh and I love to crack jokes,” she said. “I think it’s real important to keep a good sense of humor because even patients who are terminal, they still like to laugh and joke and kid, and we really enjoy that part, too. It’s not all crying; it can be, some situations that’s just where you’re at, but it’s all about making this better.”

Complete Article HERE!


Palliative Care: To Live ‘The Best That You Can’


Wendy Van de Bogart of Canton had a variety of palliative care when she was treated for cancer, but it wasn’t called that, and if it had been she would have been worried. Many people confuse palliative care with end-of-life hospice care.


When Wendy Van de Bogart was diagnosed with stage 3, HER-2 positive breast cancer, she asked her oncologist whether her treatment plan was to get rid of the cancer or just make her comfortable.

“We’re not treating this palliatively,” she remembers him saying. “It’s just to kill the cancer. We’re giving you everything to fight it with everything we’ve got.”

But while she received chemotherapy, a mastectomy, radiation and preventative medications, she also received palliative care. She just didn’t realize it because nobody used the term.

“It’s probably a good thing, because I would have thought I was on my way out the door,” says the Canton mother of three.

Some of the palliative or supportive care was provided through her cancer treatment providers, the Center for Cancer Care at Charlotte Hungerford Hospital in Torrington and at Yale New Haven Health’s Smilow Cancer Hospital, and some she found on her own, with mixed results.

Following her surgery, her clinical team connected her with a physical therapist to help her get her range of motion back and help with some swelling (lymphodema). She sought out a dietician friend, herself a cancer survivor, for nutritional advice. She saw a therapist to help her deal with the stress, a naturopathic physician for vitamins and a hypnotist someone recommended.

Van de Bogart’s experience is fairly typical. The medical community, cancer patients and their families routinely equate palliative care with hospice care. They’re not synonymous. While both are designed to provide support and symptom management to people with a serious illness, hospice is intended for people whose physicians have determined they have six months or less to live and who are no longer actively fighting the disease.

“They view us as the death squad,” says Dr. Henry Schneiderman, palliative care physician with St. Francis Hospital and Medical Center in Hartford. “The conflation of hospice and palliative care is 103 percent of the general population and 100 percent with health care.”

Palliative Care Vs. Hospice

All of hospice is palliative care, but not all palliative care is hospice, says Colleen Mulkerin, director, palliative care, social work and spiritual care at Hartford Hospital. Palliative care, and the medical sub-specialty, palliative medicine, is specialized medical care for people living with any serious illness, including cancer, heart disease, stroke, Alzheimer’s, Parkinson’s, kidney disease and diabetes, according to the Center to Advance Palliative Care. It focuses on providing relief from the symptoms and stress of living with a serious illness with the goal of improving both the patient’s and family’s quality of life.

“The exciting thing about palliative care — you don’t have to accept anything or give anything up,” Mulkerin says.

Palliative care recognizes that there’s a person and a family invested in the treatment of the illness, she says. While the oncology team’s focus is on battling the cancer, the palliative care team is providing the support that the person and caregivers need from the time patients receive their diagnosis, through treatment and follow up care.

“We often get asked to assist patients and families with clarifying their goals. That can include advance care planning and symptom management,” says Dr. Laura Morrison, an attending physician at Smilow Cancer Hospital who is Yale New Haven Hospital’s director of palliative medicine education. “It’s really not at all about dying. It’s really about living the best that you can.”

While palliative care doctors may prescribe medications to help with pain, nausea and depression, the other forms of palliative care include therapeutic massage, cognitive behavioral therapy, acupuncture, reiki, pet, art or music therapy, help with finding financial support and guidance on writing advance directives, which spell out the patient’s wishes for end-of-life medical interventions. Some cancer centers offer massage and mental health support to the patients’ caregivers, since lessening their stress helps everyone.

Studies Reveal Benefits

Multiple studies show that patients who receive palliative care live longer with a better quality of life. A study reported in the New England Journal of Medicine in 2010 concluded that people with metastatic lung cancer who received early palliative care had less depression, improved quality of life and survived 2.7 months longer than those who did not receive palliative care.

According to an Institute of Medicine study published in 2014 in the Journal of Palliative Medicine, palliative care results in “a better patient experience with improved communication and less distress; better quality of care with less aggressive end-of-life care and more use of home and hospice care when appropriate; equal or even better survival; and significant cost savings,” of an average of $2,700 per person.

“When symptoms are better controlled, when patients are coping better emotionally and when people are able to make sure their treatment aligns with their goals, we know from the literature that people do better and so do their family members,” Morrison says.

Why The Misconception?

Palliative care remains misunderstood, advocates say, because it’s a fairly new specialty, and the holistic approach to patient care has been foreign to Western medicine’s more recent focus on medical specialties.

“So often, in Western medicine, we’re asked to give all control up to our medical team,” says Dr. Kathleen Mueller, medical director at the Center for Integrative Medicine at St. Francis Hospital and Medical Center in Hartford. “I think what we’ve lost is what we can do ourselves. What we can do is work on food, movement, relationships and stress reduction. If you can make yourself more whole going into chemo, you’re going to come out better on the other end.”

While cancer treatment facilities’ palliative care services differ somewhat in how they’re staffed and the support that’s offered, most patients are referred to palliative care by their doctors or nurses. Patients are told they can ask for support, but most don’t ask.

“I think it’s really hard to mobilize the resources if you’re not referred. You’d have to have a really skilled patient or family member,” Mueller says. “I do as many lectures as I possibly can to physicians and nurses to let them know this is available, and still I will have someone say, ‘Why didn’t I know you were here 10 years ago?'”

Even in the medical field, palliative and hospice care are linked, so many oncologists incorrectly view palliative care as end-of-life care, says Morrison. Some providers are moving toward calling it “supportive care,” she says.

MD Anderson Cancer Center in Texas conducted a study that found clinicians referred patients to palliative care sooner and were less distressed about it when it was called “supportive” rather than “palliative” care.

Most subspecialists who treat serious illnesses, Schneiderman says, operate in warrior-mode doing battle against disease; some see a referral to palliative care as a defeat.

As a result, “palliative care is brought in too late. Hospice is brought in too late,” he said. “It’s always too soon until it’s too late.”

UConn Health provides palliative care, but calls it “support care” on the “Patient Resource Center” pages of its website.

“I did some research and found cancer centers, [including MD Anderson,] were moving more towards ‘supportive care,'” says Sarah Loschiavo, a nurse practitioner who serves as the gatekeeper to supportive services offered to cancer patients. “We decided that [patients] would feel more comfortable with ‘supportive care.'”

Financial Burdens

Living with the uncertainty of breast cancer is challenging for patients and their loved ones, and the added financial burden of copayments and missed work magnifies the stress.

Van de Bogart was receiving chemotherapy in the winter, which is always a challenging time for her family financially because her husband’s business is slowest during the winter months.

One day, when she was receiving an infusion, the social worker stopped by and sat with each patient, asking if there were any issues she could help with. Although Van de Bogart had rated financial concerns as only 1 out of a possible 10 on a questionnaire about sources of stress, the social worker asked her about it. She admitted that the cancer added further strain to the family’s budget.

“She ended up getting some grants from some local cancer funds,” Van de Bogart says. The social worker filled out the application forms for her, and got the family some grocery store gift cards.

“That was really helpful,” she says. “I didn’t seek her out.”

Complete Article HERE!


When a ‘good death’ was often painful: euthanasia through the ages



Today, a primary goal of both movements aimed at care of the dying – palliative care and euthanasia – is to eliminate suffering. These are underpinned by the idea that a good death is a painless death. But it wasn’t always so.

The term “euthanasia” is derived from the Greek for good death, but it only began to be used in a modern and familiar way in the late 19th century. For centuries in Western societies, “euthanasia” referred to a pious death blessed by God.

The means of achieving a good death was set out in the enormously popular ars moriendi (art of dying) guides that offered prayers, attitudes and actions intended to guide the dying towards salvation. This wasn’t necessarily a painless process. Far and away the most reproduced image of good dying was Christ’s crucifixion.

The pain that could accompany dying was seen as punishment for sin and ultimately redemptive: a chance to transcend the world and flesh through imitation of Christ’s suffering. It was also a test of the compassion and charity of friends, relatives and even strangers.

The Christian injunction to minister to suffering meant visiting and caring for the dying were seen as communal duties. Children as well as adults were expected to offer physical and moral support to those who were gravely ill.

Doctors did not typically attend the deathbed. They did not have an obvious role in the central spiritual business of dying, but nor were they particularly associated with the mitigation of suffering.

Indeed, in the pre-anaesthetic era, doctors were more likely to be associated with the infliction of pain. Surgery, of course, was excruciating, but other now infamous “heroic” remedies (such as blistering, excessive bleeding and the application of caustic chemicals to the skin) were based on the belief that pain had healing properties and involved doctors deliberately inducing it.

In the 19th century, pain began to be seen as a discrete and aberrant physiological phenomenon. Both dying and suffering were increasingly medicalised. Doctors gradually took over from the clergy and family as carers of the dying.

At the same time, the word “euthanasia” took on a new meaning. It began to refer to this new medical duty to assist the terminally ill – but not to hasten death.

In the wake of the mid-century revolution in anaesthetics and aided by innovations such as the hypodermic syringe, doctors began to “treat” the dying with painkillers as well as prayers.

In 1870, Samuel Williams, a Birmingham businessman and amateur philosopher, proposed a more definitive form of this new medical treatment for the terminally ill. In an essay called Euthanasia, published by the local Speculative Club, he wrote:

That in all cases of hopeless and painful illness, it should be the recognised duty of the medical attendant, whenever so desired by the patient, to administer chloroform or such other anaesthetic as may by-and-by supersede chloroform – so as to destroy the consciousness at once, and put the sufferer to a quick and painless death.

Williams sparked a debate that has waxed and waned but never gone away. But how had this come to look like a good way to die?

Changing meanings of pain

In 1901 psychologist and philosopher William James wrote of the “strange moral transformation” that had taken place regarding attitudes to pain:

It is not expected of a man that he should either endure it or inflict much of it, and to listen to the recital of cases of it makes our flesh creep morally as well as physically. The way in which our ancestors looked upon pain as an eternal ingredient of the world’s order, and both caused and suffered it as a matter-of-course proportion of their day’s work, fills us with amazement.

Historian Stephanie Snow observes that as anaesthetics and other methods of pain relief became available in the 19th century, people began to see pain – the experience but also the sight of it – as more damaging and demoralising.

A new generation of comfortably off Victorians who considered anaesthesia commonplace could no longer stomach physical suffering. Now pain was something that could not just be eliminated but struck as cruel, unusual and degrading: “an alien force which undermined man’s very humanity”.

Dying and suffering became things from which people, particularly children, should be shielded.

A modern paradox

Medical methods aimed at eliminating the pain of the dying process developed as the fear of death – a fear that for centuries dwelt on the post-mortem horrors of hell – began to centre on the horror that could precede it.

Paradoxically, this fear arose and gained momentum as most people in Western cultures became increasingly insulated from such suffering. As mortality declined, more people died in hospital under the care of specialists, and doctors’ ability to control pain advanced in ways previously unimaginable.

This very modern anxiety can be historically tracked from Williams’s 1870 proposal to the assisted dying bill soon to be debated in the Victorian parliament.

Our ancestors would be amazed.

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