Category: Healing and Helping Professionals

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Rural Doctor Launches Startup To Ease Pain Of Dying Patients

By April Dembosky

Dr. Michael Fratkin is getting a ride to work today from a friend.

“It’s an old plane. Her name’s ‘Thumper,’ ” says pilot Mark Harris, as he revs the engine of the tiny 1957 Cessna 182.

Fratkin is an internist and specialist in palliative medicine. He’s the guy who comes in when the cancer doctors first deliver a serious diagnosis.

He manages medications to control symptoms like pain, nausea and breathlessness. And he helps people manage their fears about dying, and make choices about what treatments they’re willing — and not willing — to undergo.

In rural Humboldt County, in the far northern reaches of California, Fratkin is essentially the only doctor in a 120-mile stretch who does what he does.

“There’s very little sophisticated understanding of the kinds of skills that really matter for people at the very end,” he says.

It takes 30 minutes to fly from Eureka, Calif., to the Hoopa Valley Indian Reservation. On this trip, Fratkin is going to visit a man named Paul James, who is dying of liver cancer.

“A good number of patients in my practice are cared for in communities that have no access to hospice services,” Fratkin says.

The plane touches down on a narrow landing strip. A loose horse runs next to the plane as we taxi down the runway.

Fratkin is here to make a rare house call. He met Paul and his wife, Cessie Abbott, at the hospital in Eureka. But the two-hour drive is too far for them to make often, so Fratkin comes to them.

It’s a visit that Cessie, in particular, has been waiting for. She and her husband know he’s dying. But it’s hard for them to talk to each other about it.

“Dr. Fratkin has kind of been my angel,” she says. Fratkin gets her husband to open up, she says, and reveal things he might not otherwise, because Paul’s “trying to be strong for us, I think.”

Cessie tells Fratkin that the pain in Paul’s belly has been getting worse.

“He’s moaning in his sleep now,” she says.

“Have you ever taken morphine tablets?” Fratkin asks Paul. Cessie explains that those tablets didn’t work for her husband. “Have you ever taken methadone?” Fratkin asks him. “We’re going to add a medicine that is long-acting.”

Fratkin believes there should be a spiritual component of these discussions, too.

“Yeah, Paul, there’s more to you than this body of yours, isn’t there?” he says, a refrain he repeats with almost all his patients.

“Oh yeah,” Paul says, and then goes quiet for a bit. He’s a member of the Yurok tribe, and talks about how happy he is when he’s in the mountains, hunting with his grandsons.

Cessie says she can hear Paul praying when he’s alone in the bathroom. So Fratkin asks him to light some Indian root and say a prayer now.

“Great spirit, that created this earth …,” Paul begins, his eyes clenched shut.

By the time Fratkin leaves the Hoopa Valley, he’s spent half a day with one patient. This is something the hospital in Eureka just couldn’t afford to have him do.

Fratkin says he was under constant pressure to see patient after patient to meet the hospital’s billing quotas.

“It’s very hard for one doctor to manage the complexity of each individual patient and to crank it out in any way that generates productive revenue,” he says.

Fratkin decided he couldn’t, within the hospital system, easily provide the kind of palliative care he sees as his calling. So he decided to quit — and launch a startup.

“I had to sort out an out-of-the-box solution,” he says.

He calls his new company ResolutionCare. There’s no office, no clinic. Instead he wants to put the money for those resources into hiring a team of people who can travel and make house calls, so that very ill patients don’t have to get to the doctor’s office. When time is stretched, he plans to use video conferencing.

The key challenge is financing his big idea. Government programs like Medicare and Medicaid don’t pay for video sessions when the patient is at home. And they pay poorly for home visits.

So far, Fratkin has been cultivating private donors and is looking for foundation grants. He’s arranged an independent contract to sell his services back to the hospital he recently left. And he’s launched a crowdfunding campaign to back the training he’d like to do for other doctors of palliative medicine who practice in rural areas.

Down the line, Fratkin is even thinking of asking some of his more well-off patients to pay out-of-pocket for his services.

When he gets back to Eureka, after the visit with Paul James, Fratkin hops in his blue Prius and drives 30 minutes north to see Mary Maloney. She’s dying of esophageal cancer. She tried radiation and chemo for a while, but both made her feel awful. Fratkin was the one who told her it was OK to stop treatment.

“I mean, I love life,” Maloney says from the recliner in her home in Blue Lake. “I don’t want to let it go. But I don’t know if I’m willing enough to put myself through all the things I’d have to put myself through.”

Fratkin says he’s treated more than a thousand patients and, like other entrepreneurs with big ideas, thinks his startup could change the world. He knows he’s up against tough odds though — most startups don’t succeed.
Complete Article HERE!

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‘Warehouses for dying people’: Are we prolonging life or prolonging death?

By Peter Whoriskey

The doctor floated through the intensive care unit, white lab coat flapping, moving from room to room, scanning one chart and then another, often frowning.criticalcare_4c1

Unlike TV dramas, where the victims of car crashes and gun shots populate the ICU, this one at Sentara Norfolk General, as in others in the United States, is more often filled with the wreckage of chronic disease and old age.

Of 10 patients Paul Marik saw that morning, five had end-stage kidney disease, three had chronic respiratory ailments, some had advanced dementia. Some were breathing by virtue of machines; others had feeding tubes; a couple were in wrist restraints to prevent them from pulling off the equipment.

For a man at a highly rated hospital surrounded by the technology of medical miracles, Marik sounded a note of striking skepticism: Patients too often suffer in vain attempts to prolong life, he said, because of the mandate to “do everything.” The urge to deploy every last aggressive medical technique, in other words, was hurting people.

“I think if someone from Mars came and saw some of these people, they would say, what have they done to deserve this punishment?” said Marik, gesturing to the surrounding rooms. “People might say we are prolonging life, but we end up prolonging death.”

aggressive end-of-life care3Critics of U.S. health care have long marshaled evidence against the overuse of aggressive end-of-life care, but the idea that many Americans are dying badly — subjected to desperate treatments in ways that are not only expensive but painful and medically futile — has gained currency of late.

This fall, a photogenic 29-year-old with brain cancer made the cover of People magazine with the decision to end her life on her own terms. About the same time, Medicare proposed that doctors be paid for discussing with patients their options for treatment — or not — at the end of life. And on the best-sellers lists is “Being Mortal,” a surgeon’s critique of the way the United States handles decline and death.

In it, author Atul Gawande warns, among other things, that “spending one’s final days in an ICU because of terminal illness is for most people a kind of failure.”

Marik’s long-standing argument, which is notable in part for coming from an ICU doctor, is this: The nation has double or triple as many ICU beds per capita as other Western nations, it spends inordinate amounts of money in the last months of life, and worst of all, this kind of care isn’t what patients want.

His doubts about end-of-life care appear to be widely shared among his ICU colleagues.

A 2013 survey conducted in one academic medical center, for example, found that critical care clinicians believed that 11 percent of their patients received care that was futile; another 9 percent received care that was probably futile, it said.

Marik blames, in part, people’s unwillingness to face up to the inevitable.aggressive end-of-life care2

“Americans not only don’t want to die, they are unwilling to accept the reality of death,” said Marik, who is also a professor at Eastern Virginia Medical School and chief of critical medicine at the school. “Unfortunately, old people get diseases and die.”

It pays to provide treatment

The remedy lies, in part, with hospices, which are hired to take care of patients after they opt out of aggressive end-of-life care.

Amid rapid growth, that industry has been marked by infrequent government inspections and, in places, lapses in quality. But when the service has been properly provided, families sometimes describe it as a godsend, and experts say hospices serve a critical role in the U.S. health system.

A number of factors, economic and personal, keep many patients from enrolling in hospice care, however.

For starters, it pays to keep dying patients undergoing more treatment, according to experts.

“Financial incentives built into the programs that most often serve people with advanced serious illnesses — Medicare and Medicaid — encourage providers to render more services and more intensive services than are necessary or beneficial,” according to Dying in America, a massive report issued in September by the Institute of Medicine.

But strains at a more personal level also keep patients in treatment.

Doctors are reluctant to disappoint a patient with the grim truth, and knowingly or not, keep false hopes alive. Families meanwhile sometimes overestimate the power of modern medicine.

aggressive end-of-life careTake, for example, the use of CPR, the technique that can restart a heart, but which, particularly in the elderly, can result in broken ribs, and even if successful in reviving a patient, may lead to a much-diminished quality of life.

“Have you ever seen it done on television?” Marik asks, rolling down a corridor with a class of students behind him. “They all wake up right away. But in real life, only about 5 to 10 percent of people — if they’re over 70 — leave the hospital alive.”

Indeed, a 1996 New England Journal of Medicine an analysis of popular shows like “ER,” showed that two-thirds treated by CPR survived until discharge.

“When CPR became widespread in the ’60s, it wasn’t considered ethical to perform it on people who are unlikely to recover,” Marik said. “Now it’s done all the time, regardless of the consequences.”

‘A warehouse for the dying’

Marik has been making his argument in published papers at least as far back as 2006, and his criticism echoes others in the field. An ICU doctor in Gawande’s book, for example, complains that she is running “a warehouse for the dying.”

“We’re kind of powerless to change the system — this is what society expects of us and what we are legally required to do,” Marik said. “But many clinicians are frustrated.”

Nurses, who interact with patients more, may be just as adamant about the issue. They see patients grimacing as they clean wounds around tubes into the lungs or stomach; they see confused patients trying to remove breathing equipment; they treat the bed sores of patients immobilized for long periods.

“There are cases where you honestly feel like you are just causing more harm or pain to the patient and you wonder if their family really understands what’s going on,” said Karen Richendollar, a nurse at the intensive care unit at Sentara Leigh Hospital here.

Surveys of intensive care nurses at 14 ICUs in Virginia, published in 2007 in the journal Critical Care Medicine, found that the leading cause of moral distress arises from the pressure to continue aggressive treatment in cases where the nurses do not think such treatment is warranted.

“The distress comes when there is no hope that whatever we are going to do will provide any different outcome,” said Becky Devlin, the supervisor in the ICU here. “The patient is going to die anyway, and we are just prolonging things. That’s where the distress comes in.”

For example, Devlin and Richendollar said, a woman then in their care was more than 90 years old, with blood pressure and severe kidney problems as well as severe dementia. She was being fed through a tube and had a urinary catheter.

Most imposingly, the woman was breathing via a ventilator, and to prevent her from removing the tube that had been inserted into her mouth and down her throat, restraints tied her hands to the sides of the bed.

“No one can be comfortable with all of that,” Devlin said. “Some of the family members are against further treatment, but there are others that make the decisions and they want to keep going.”

End-of-life planning key

One key way to avoid unwanted treatment, according to experts, is to solicit a person’s preferences for end-of-life care before a crisis arrives.

Toward that end, Sentara, which was ranked this year atop the “Best Hospitals in Virginia” by U.S. News & World Report, joined a coalition of hospitals and agencies on aging that in November launched a program to promote end-of-life planning in the Norfolk and Virginia Beach area. It has set up a Web site, asyouwishvirginia.org.End-of-life planning

The program hopes to inspire people to write down their wishes and appoint a health-care advocate to speak for them if they can no longer do so. Organizers will blanket the region’s religious group and elderly care organizations to encourage people to make end-of-life plans.

“Unfortunately when these situations [in the ICU] come up, families will say, ‘Doc, what should I do?’ But that’s not something that doctors can really answer,” said David Murray, director of the group, known as the Advance Care Planning Coalition of Eastern Virginia. “We need to hear from the patients or their representatives — earlier than we do now.”

Take, for example, one of Marik’s patients, a 72-year-old woman who’d come into the emergency room last month after her family found her confused.

Living at home, she’d long been beset by multiple health woes, mainly congestive heart failure and respiratory problems and bipolar disorder. Given her fragility, it would have been natural to have elicited her end-of-life wishes.

No one did, however, and at the hospital last month the hospital staff and the family spent several anguishing days discussing how best to proceed with her care.

Her labored breathing — her inability to draw in oxygen — was the central problem for the doctors. As she struggled for air, the carbon dioxide levels in her blood rose to dangerous levels. She grew anxious as a result, and this only worsened her breathing.

She was moved to the ICU.

The staff placed an oxygen mask called a biPAP around her head, fitting it snugly around her mouth and nose. The device forces oxygen from a hose into the nose and mouth, but it is often uncomfortable.

As a result, the patient was at risk of removing it. So in addition to being sedated, her hands were restrained — tied by cloth belts to the sides of her bed.

She could be heard that Monday calling out, at times, unintelligibly.

“Take me, Jesus,” she shouted at one point.

She wasn’t the only one bothered by the arrangement.

“The nurses and I were really uncomfortable — this poor little old lady,” Marik said. “She was an elderly demented lady with chronic end-stage lung disease. . . . We were subjecting her to a lot of pain and indignity with very little potential for gain. We shouldn’t be forced into that kind of situation, but we often are.”

By Wednesday, the hospital’s palliative medicine team met with family members, and in the coming days, the patient’s sister and daughter decided to forgo aggressive treatment and opt for measures meant primarily to keep her comfortable.

The uncomfortable mask and the wrist restraints came off. Her vitamins and cholesterol drugs were stopped. She was given medicine for her anxiety, which family members said had been a long-running source of trouble for the patient.

The patient was also prescribed morphine, a drug sometimes avoided until the end of life, but one that relieves pain and calms breathing. Nurses were instructed to give her morphine when her breaths exceeded 20 per minute.

Placed under hospice care, she was sent to a nursing home the next Monday.

There, the patient seemed to rally, regaining the ability to interact with family members. The color returned to her face. She even said she was enjoying music they brought in.

A few days later, after the family had the chance to call in distant relatives, she died.

Marissa C. Galicia-Castillo, a doctor in the hospital’s palliative medicine department, said it is common for patients to die in the ICU hooked up to machines.

“Fortunately . . . [this patient] was able to get out of the hospital into a more home-like environment, enjoy some familiar comforts, visiting and talking with loved ones before the natural end of her life,” she said.

But it wasn’t without the torment before the family decided that the aggressive measures may be introducing more pain than relief. Sometimes frail elderly patients languish weeks or months before family members opt for the comfort measures. Sometimes they die hooked up to multiple machines. In this sense, this patient constituted a success.

“We all knew she was dying, and that was the tragedy,” Marik said. “We knew we were just prolonging her death.”

Complete Article HERE!

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Institute of Medicine urges reforms to improve care for dying people

By Lisa M. Krieger

An influential national institute has prescribed a powerful cure for America’s approach to dying, saying that today’s health care system is ill-equipped to provide the comfort and care so cherished in our final days.

The long-awaited report released Wednesday by the Institute of Medicine recommends that regular end-of-life conversations become part of patients’ primary care, starting at age 18 and that doctors should be paid for time spent on these discussions — a controversial initiative eliminated from President Barack Obama’s health care law.

A medical bill, family photographs and belongings of Lisa Krieger’s late father Kenneth Harris Krieger.(Dai Sugano/Staff)
A medical bill, family photographs and belongings of Lisa Krieger’s late father Kenneth Harris Krieger.
The report reflects the growing concern over the dizzying array of high-tech interventions to emerge in recent years that prolong futile suffering, often at great emotional, physical and financial cost. Those interventions were the subject of this newspaper’s yearlong series “Cost of Dying.” To correct the current, misguided course, Medicare should boost coverage for home health services, not just high-tech hospital care, the report urges. And more doctors must be trained and licensed in end-of-life care, through changes in universities, state medical boards and accrediting agencies, it adds.

“Even though death is very much part of the cycle of life, thinking and talking about one’s own death usually remains in the background,” said Dr. Philip Pizzo, former dean of Stanford University’s School of Medicine and a co-chairman of the report.

“It is our hope,” said Pizzo, “that this report will lead to improvements in end-of-life care and the experience of dying for all.”

The 21-member committee, which included experts in law and medicine, devoted two years to studying federal policy, financing and hospital practices. Recommendations of the institute, a private, nonprofit arm of the National Academy of Sciences in Washington, D.C., often make their way into U.S. laws and federal agency policies.

The “Dying in America” report recommends that federal and state governments and private insurers create financial incentives for patients and clinicians to discuss end-of-life matters, document patient preferences, and provide appropriate services and care.

The report authors also suggest having initial conversations about end-of-life values, guided by a physician, at milestones of life, such as getting a driver’s license, turning 18, leaving home or marrying. Additional planning should occur for those in high-risk occupations, at the onset of chronic illness and when applying for Medicare.

“There is unnecessary and gratuitous suffering all over the place,” said Dr. BJ Miller, executive director at San Francisco’s Zen Hospice, who was not involved in the report. “But when the Institute of Medicine says something, people listen — at all levels,” said Miller, an assistant clinical professor of medicine at UCSF.

A Stanford end-of-life care expert said the report is ” relevant to persons who are seriously ill, their parents, children, extended families — which essentially means every American.”

“The timing of the report is exquisite, especially as the population of multiethnic older Americans is now exploding into a ‘silver-brown tsunami,’ ” said Dr. VJ Periyakoil, director of Palliative Care Education & Training at Stanford’s School of Medicine.

The 507-page report mirrors findings of this newspaper’s Cost of Dying series — posted at www.mercurynews.com/cost-of-dying. The series concluded with a story that prescribed ways to make end-of-life care more affordable and humane and led to community meetings throughout the Bay Area.

Data show that patients subjected to ineffective and burdensome high-tech treatments do not necessarily live a quality life longer — but instead suffer a prolonged dying. Such care is expensive and physically and emotionally hard on patients and their families.

But political controversy — and a human tendency to avoid thoughts of one’s own death — have derailed discussion of a profoundly important subject.

A 2009 provision of the Affordable Care Act to pay doctors for end-of-life counseling was labeled a “death panel” and never found its way into the law. A second attempt to authorize payment also was shelved.

The fee-for-service structure of the health care system is also to blame, the report concludes. “Perverse financial incentives” reward expensive high-tech and hospital procedures, rather than conversations, home health care and pain management.

The report was funded by a $1.5 million gift from an anonymous donor — who has also offered to fund a yearlong public education campaign.

“Most of us understand that we will die,” Miller said. “But we don’t know how to talk about it or what to do about it.”

ACTIONS

The Institute of Medicine makes five recommendations to lessen suffering at the end of life.

1. Cover comprehensive care for people with advanced serious illness nearing the end of life. 2. Develop concrete standards for doctors and patients to discuss and plan end of life care.
3. Set training, certification and license requirements to strengthen the knowledge and skills of all doctors who care for ill people nearing the end of life.
4. Integrate the financing of medical and social services to support quality care consistent with the values, goals and informed preferences of such people.
5. Widely provide fact-based information to encourage planning for the end of life and making informed choices.

Complete Article HERE!

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How to help ensure you die on your own terms

By LISA ZAMOSKY

Earlier this year, Gary Spivack and his sister Betsy Goodkin lost their mother to cancer. Between her first diagnosis and her death in April, her children say, their mother was determined to overcome her illness.

Gary Spivack and his sister Betsy Goodkin

“She was a very stubborn and proud person who fought this and had a lot of support from immediate family and a lot of friends,” says Spivack, 49, a music industry executive who lives in Pacific Palisades.

“She was going to live out her final minutes as healthy and fighting it as much as she could,” adds Goodkin, 51, who describes herself as a “full-time mom” in the Cheviot Hills neighborhood of Los Angeles.

But even as their mother fought to stay alive and healthy, her children say, she made her end-of-life wishes known: If death was imminent, she wanted no heroic measures taken to save her life. And she insisted on dying at home.

They said their mother passed away April 13 in just the manner she had hoped: She was in her own bedroom with the lights low and the mood peaceful. She held hands with loved ones as she passed.

Dr. Neil Wenger, director of the UCLA Health Ethics Center, said most patients would prefer to die that way, but few actually do. That’s because they fail to put their final request in writing, he says.

Without advanced planning, he says, most people die in hospital intensive care units, “in not the most dignified circumstances, in a way most say they don’t want to die.”

Why the gap between what people say they want at the end of their lives and what actually happens? There are many reasons.

A recent study published in the American Journal of Preventive Medicine found that lack of awareness is the most common reason people cite for not having written instructions prepared in advance.

“People go into a mode of thinking — and are encouraged to — that ‘if I just apply enough technology I will survive it,'” says Barbara Coombs Lee, president of Denver group Compassion & Choices. They even continue “in that mode of thinking when it’s perfectly obvious they are actively dying.”

Doctors also avoid such talks. Some physicians incorrectly believe patients don’t want to discuss death. Others pass the buck, believing it’s some other doctor’s responsibility to have the discussion.

These talks take time and can be emotional. “Doctors are human and they bring to the table a lot of their own emotions about death and dying, and these can be very difficult conversations to have,” said Dr. Glenn Braunstein, vice president of clinical innovation at Cedars-Sinai Medical Center.

A report out last week by the Institute of Medicine stated that medical and nursing education fails to orient healthcare providers toward less aggressive forms of end-of-life care, and many providers simply lack the communication skills needed to have these conversations.

Also, the report noted, providers are still largely paid to deliver more services, rather than fewer — even when treatment is futile.

Experts offer recommendations for putting end-of-life plans in place and what needs to be considered.

Open up the lines of communication. Frequent conversations about end-of-life goals between doctors and patients are essential if unwanted treatment is to be avoided, experts say.

“When people fail to plan for the worst, often they find themselves in a struggle to avoid an imminent and inevitable death that ends up causing an enormous amount of suffering for them and for their family members,” Coombs Lee says.

“Anyone with a life-threatening disease should know their options and the efficacy rate of any treatment they are offered,” she says.

Insist on shared decision-making. End-of-life conversations should be part of shared decision-making between a patient and his or her doctor, Braunstein says.

“You take into account the patient’s preferences, their spirituality and a variety of things. At the same time the physician should be giving honest information about what the prognosis is, what we can do and what we can’t do,” he says.

Talk about comfort care: Conversations should include discussions about your various treatment options, including palliative care, which emphasizes a patient’s physical and emotional comfort. Braunstein said palliative care should start well before a patient is terminally ill.

Also important is to talk about hospice care — treatment when you are no longer attempting to prolong your life but rather focusing on staying comfortable and managing pain in your final days.

“We think of hospice care delivered in the home as the gold standard,” Coombs Lee says.

Research suggests that people who receive palliative and hospice care may live longer than ill patients who don’t.

Select an agent. It’s a good idea to name someone such as a family member or close friend to serve as your healthcare agent.

This should be the person you most trust to represent your best interests and who will make sure your wishes are respected and carried out. Your agent can’t be your doctor or other healthcare providers treating you.

Establish an advance care directive. These directives for your last days are legal documents. They allow patients to state their treatment wishes and appoint someone to make medical decisions on their behalf.

They should spell out what you want to have happen and what you don’t. They must be signed by two witnesses — not your doctor or the person you name as your healthcare agent. Alternatively, you can have the document notarized.

A copy should be given to your healthcare agent, other family members or friends, and to your doctor. Ask that it be included as part of your medical record.

Get your doctor’s orders in writing. A Physician Orders for Life-Sustaining Treatment is a frequently used document to be signed by both the physician and the patient.

It generally is filled out when a person’s anticipated life span is six months or less and is put in a prominent place where caregivers and paramedics can see it. “The document is pink so it stands out, and we tell people to put it on their refrigerator or where they’re sitting downstairs,” Braunstein says.

Goodkin of Cheviot Hills says she learned a lot from her mother’s passing in April, namely about how to die on your own terms.

“Everybody wants to die with dignity, bottom line,” she says. “Whatever that means to somebody, you just have to honor that.”

Complete Article HERE!

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Study finds unwanted care near death

West Palm Beach, Fla. — Americans suffer needless discomfort and undergo unwanted and costly care as they die, in part because of a medical system ruled by “perverse incentives” for aggressive care and not enough conversation about what people want, according to a report released Wednesday.

palliativecareAlthough people repeatedly stress a desire to die at home, free from pain, the opposite often happens, the Institute of Medicine found in its “Dying in America” report. Most people do not document their wishes on end-of-life care and even those who do face a medical system poorly suited to give them the death they want, the authors found.

The result is breathing and feeding tubes, powerful drugs and other treatment that often fails to extend life and can make the final days more unpleasant. The report blamed a fee-for-service medical system in which “perverse incentives” exist for doctors and hospitals to choose the most aggressive care, inadequate training for those caring for the dying, and physicians who default to lifesaving treatment because they worry about liability.

Recommendations of the institute, a private nonprofit arm of the National Academy of Sciences, often make their way into U.S. laws and federal agency policies.

“It’s not an intentional thing. It’s a systemic problem,” said David Walker, the former U.S. comptroller general, who co-chaired the committee of 21 experts that issued the 500-page report.Palliative-Care

Advance directives including living wills have been unpopular and ineffective, the report says. It urges repeated conversations about patients’ wishes beginning far earlier than many would think — perhaps as teenagers — and continuing the talks throughout life.

“The fee-for-service model, the lack of coordination between medical and social services, the challenges that individuals face in finding a provider who’s willing and knowledgeable to speak with them about death and dying all conspire against them coming up with the right individual plan,” said Philip Pizzo, a doctor who was co-chair with Walker.

Pizzo wrote: “Even though death is very much part of the cycle of life, thinking and talking about one’s own death usually remains in the background. It is our hope that this report will lead to improvements in end-of-life care and the experience of dying for all.”

Palliative care praised

The report praised programs in palliative care, which focuses on treating pain, minimizing side effects, coordinating care among doctors and ensuring that concerns of patients and their families are addressed. This type of care has expanded rapidly in the past several decades and is now found in a majority of U.S. hospitals, but the report says many physicians have no training in it.

Palliative-Care2“This report is relevant to persons who are seriously ill, their parents, children, extended families which essentially means every American,” said VJ Periyakoil, director of Palliative Care Education and Training at Stanford University’s School of Medicine, who was not involved in the report.

In many ways, the report is a repudiation of the controversy created by the term “death panel” in response to President Barack Obama’s health care law. The claim centered on the government saving money by deciding who would live and who would die. The controversial proposal never found its way into the law, the 2010 Affordable Care Act.

In fact, the report says the very type of end-of-life care Americans say they want would shrink medical bills and reduce the governmental burden.

“They will have a higher quality of life, and it’s very likely to be less expensive,” said Rep. Earl Blumenauer (D-Ore.), a frequent voice on end-of-life issues who reviewed the report. “But the main key here is that we should be giving people what they want.”

Blumenauer has sponsored a bill to allow Medicare to pay doctors for having end-of-life conversations with patients. That is the very idea that set off the “death panel” fury, which generated the most widespread and high-profile conversations on end-of-life care in the United States since the case of Terri Schiavo, a brain-damaged Florida woman who became the center of a protracted court fight over having her feeding tube removed.

Complete Article HERE!

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It Never Entered My Mind

“Though we may be sick, even sick to death, we don’t stop being human. And our desire for the intimate connections we have with those we love remain intact until we die.”

 

 

This is how the conversation started. She said, “It’s hard to talk about this, but I need to tell you what happened.” I said, “OK! Yes, talking things through is often helpful.”

Rebecca is 68 years old. Her husband of 46 years, Jim, age 72, is in a Midwest hospice. He will die very soon. Rebecca tells me, that she and her husband were blessed with good health throughout their long lives. In fact, the only time either of them was in a hospital was for the births of there three daughters. However, six months ago Jim began to complain of a persistent stomachache. His interest in food evaporated. He began to lose weight and he felt tired and run down most of the time. At first he chalked it up to stomach flu, but the symptoms just wouldn’t let up.

hospice025Fast forward five months, past the initial visit with his family doctor, and the blizzard of tests, and the arrangement to see out-of-state oncologist, and an avalanche of more tests, to Jim and Rebecca’s day of reckoning. “Jim, I’m afraid your cancer is inoperable.” His oncologist tells them. “We could try an intensive campaign of chemotherapy and radiation to slow the growth of your tumors, but that’s about all that is humanly possible.”

The doctor’s verdict hit them both like a semi. They left for home the next day. They wisely decided to forego the chemo and radiation and opted for as much quality of life that divine providence would afford them, which, by all accounts, would no more than a month or two.

“It all happened so fast. There was precious little time for Jim to even say goodbye to our daughters and their families, all of who live out of state.” Rebecca is recounting Jim ’s last few days at home. “Our house is not set up for the kind of care Jim was going to need, so we looked to hospice.” Tears pool in Rebecca’s eyes. “I feel like I’m on a run-away train heading, at top speed, for a derailment. I’m terrified and helpless.”

“Jim and I have always been close. I don’t think we spent more than a few nights apart in 46 years of marriage. And we’ve always been very affectionate with one another, even in public. Our friends used to kid us about behaving like newlyweds. They would joke and say, “Hey, get a room!” I think they were all secretly jealous.”

Rebecca is now spending all her waking hours with Jim at the local hospice, which is basically nothing more than a glorified hospital ward. But she tries to make the best of it. She brings linens and towels from home and family pictures and fresh-cut flowers fill Jim’s room. They hold hands and reminisce when Jim isn’t zonked out on morphine. And when he is out of it, Rebecca still holds his hand while she prays.

“Last week Jim had a real bad spell.” Rebecca continues. “He was uncomfortable and agitated. I didn’t know what to do, so I did the only thing I could think of. It’s exactly what I would have done if we were home. I kicked off my shoes, took off my sweater, and climbed into bed with Jim. He was lying on his side, so I slid one of my arms under his neck and I draped my other arm over his abdomen. I nuzzled his neck. I could actually smell him, like I remember him smelling before the hospital odors dominated. In a matter of minutes my embrace calmed us both. It was such a beautiful moment, I’ll never forget it.”

Unfortunately, the reason Rebecca won’t forget that final embrace is not because of the tenderness and intimacy she was sharing with her dying husband, but because shortly after she lay down with Jim in his bed, one of the hospice nurses barged into the room.hospitalbed

“The nurse, hands on her hips like some schoolmarm, face aglow with disapproval, glared at me.” “What do you think you are doing? We can’t have this sort of thing in here. I’ll have to ask you to leave that bed immediately.”

“Well you would have thought we were caught in an indecency. I stammered for words to explain, but no words came out only a groan. I was so ashamed. I must have been beet-red with embarrassment. It took me a few moments to untangle myself from Jim and find my footing on the floor. Luckily Jim slept through the whole thing. Bless him.”

Tears are now streaming down Rebecca’s face. “It never entered my mind that cuddling with my dying husband, soothing and comforting him, might be interpreted as something inappropriate. When the nurse finally left the room, I hung my head and wept.”

This is a cautionary tale; though we may be sick, even sick to death, we don’t stop being human. And our desire for the intimate connections we have with those we love remain intact until we die.

So many of us are thoughtless about the intimacy needs of those around us. Is this a sign of our culturally induced unease with sex? Probably. But when our thoughtlessness impacts on the lives of those who, for whatever reason, are incapacitated, that disregard can be devastating. Regardless if our neglect is careless or intentional the injury is the same.

Those of us who care for and attend sick, elder and dying people need to be particularly vigilant to our prejudices and discomfort around sex, sexuality, and intimacy. Jim’s thoughtless nurse compounded Rebecca’s grief and anguish with guilt and shame. This professional woman should have known better. She violated her patient’s privacy and then shamed her patient’s wife for an innocent act of loving care. And for what?

I believe we ought afford all people, especially those who are incapacitated, a modicum of privacy. I believe that personal privacy should be part of every patient’s bill of rights. Curiously enough, the privacy of our medical records takes precedence over our own personal privacy. What a strange world we live in. And I also believe that when we violate the privacy rights of another it’s a form of abuse and harassment.