Decision Aids For Advance Care Planning: An Overview Of The State Of The Science

Decision Aids For Advance Care Planning: An Overview Of The State Of The Science

Posted on Wednesday, July 30th, 2014 at 1:57 pm by lifemediamatters

Decision aids for advance care planning can promote a staged approach with goals and outcomes that vary according to the patient’s circumstances. Only those with advanced illness or at high risk for catastrophic health events would be advised to seek specific information on their condition and options for life-sustaining treatments and then be encouraged to name a health care proxy and ensure that person is aware of care preferences. Those with less certain future health needs would simply be encouraged to choose and document a decision maker. The information that will best serve the needs of patients depends on a clearly defined target audience, which is often easiest to accomplish for disease-specific tools (The Annals of Internal Medicine).

Facing Alzheimer’s With Family

Posted on Wednesday, July 30th, 2014 at 8:43 am by lifemediamatters

The Genius of Marian intimately explores the devastating effects of Alzheimer’s disease on a close-knit Northeastern family. The documentary, directed by married couple Anna Fitch and Banker White, focuses on Banker’s 61-year-old mother who is struggling with early-onset Alzheimer’s disease.

The film, made of blurry home movies, one-on-one interviews and family photos, opens with a scene from their 2009 Christmas celebration. Pam White offers her family a jar of macadamia nuts, but mistakenly refers to them as “acadania nuts,” foreshadowing a sharp decline in her cognitive abilities.

Pam, a former model and social worker, often smiles and retains a sense of elegance throughout the film’s most difficult moments. In one extended scene, she is unable to remember how to put on her coat and scarf. In another, she struggles to enjoy a fishing trip at the lake, to the annoyance of her husband, Ed, who serves as her primary caregiver. Not one scene is glamorized.


Pam White faces early-onset Alzheimer’s. Still from “The Genius of Marian.”

We learn that in 2008, Pam decided to write a book about her mother, acclaimed painter Marian Williams Steele, who died in 2001 from complications associated with Alzheimer’s. One year into the project, Pam was diagnosed, and was never able to finish it.

“I’ve never made a personal film before. The desire to move home, because we were based in San Francisco, was initially to help my dad out and make sense of things,” Banker told Life Matters Media. “I think it became clear that it could be a very powerful thing to share with other people. The film even helped our family communicate better.”

Anna first became acquainted with Pam through the earliest video recordings. “It made me think about my relationship with my parents,” she said. “I thought this would resonate universally.”

Early in the film, Pam seems to be in denial about her diagnosis. In a tense scene recorded while driving, Banker asks if she remembers her mother’s decline. “She had Alzheimer’s, and I don’t,” she replies. “Didn’t the doctor say that you did have early-onset Alzheimer’s?” Banker asks. “Careful!” Pam says, focusing her attention on the road. She is upset because she can no longer simply take the car and drive to the grocery store.

“There are definitely things that are awkward, but in a documentary you are tasked with managing a relationship between you and your subjects and being honest with the audience,” Banker said. “Alzheimer’s is such an isolating disease, because of the stigma attached with it and the requirements it puts on caregivers.”

According to the Alzheimer’s Association, nearly six million Americans face the irreversible disease, a number expected to increase as the baby boomer generation ages. Nearly one in six women 65 and older will be diagnosed in their lifetimes.

One of the most difficult effects of Alzheimer’s on family and friends is the slowness of the decline, Banker added.

“You are constantly reminded of who this person used to be, while you’re simultaneously losing this person, so there is no space for mourning. You are kind of overwhelmed with the responsibilities of caring and redefining your relationship,” he said. “But there is also a special side, because it does give you time. Some of the most special moments with my parents have happened over the last four years.”

Anna said she believes a lack of hope and response from patients is one of most difficult parts of the disease. “You’re caring for someone who is able to give you less and less as things get more difficult, and that’s just hard,” she added. “There is also no room for hoping it will get better, that there will be a better path ahead.”

In an effort to help patients and families share their experiences, Anna and Banker said they hope to launch an interactive story sharing website in the coming weeks.

The Genius of Marian, an official selection of the 2013 Tribeca Film Festival, will be broadcast across the nation Sept. 8 as part of the PBS series POV.

Desmond Tutu’s Support For Aid-In-Dying Legislation Highlights Divide

Posted on Thursday, July 24th, 2014 at 8:36 am by lifemediamatters

Retired Anglican Bishop Desmond Tutu has thrown his support behind Britain’s controversial aid-in-dying bill, highlighting the divide between Anglican leaders who support “Death with Dignity” legislation and others who argue it reduces the sanctity of life.

“I have been fortunate to spend my life working for dignity for the living. Now I wish to apply my mind to the issue of dignity for the dying,” the Nobel peace laureate and anti-apartheid leader wrote in an editorial published in The Guardian. “I revere the sanctity of life — but not at any cost.”

Tutu at the German Evangelical Church Assembly, 2007

Tutu at the German Evangelical Church Assembly, 2007. Courtesy WikiMedia Commons.

Tutu, the 82-year-old archbishop emeritus of Cape Town, South Africa, acknowledged his own mortality in the editorial. “I have come to realize that I do not want my life to be prolonged artificially,” he said. “I think when you need machines to help you breathe, then you have to ask questions about the quality of life being experienced and about the way money is being spent.” He was hospitalized last year for a persistent infection.

Tutu said he is closer to his end than to his beginning, and that death should not be taboo, since humans must “make way for those who are yet to be born.” He wishes to be buried in a modest wooden coffin with rope handles.

He further described former South African President Nelson Mandela’s end of life care as “disgraceful.”

“On Mandela Day we will be thinking of a great man,” he said. “On the same day, the House of Lords will be holding a second hearing on Lord Falconer’s bill on assisted dying. Oregon, Washington, Quebec, Holland, Switzerland have already taken this step.”

Mandela, who was imprisoned 27 years for his anti-apartheid activity, became South Africa’s first black president in 1994. He died in December at 95, after facing a prolonged lung infection that left him incapacitated.

“What was done to Madiba (Mandela) was disgraceful. There was that occasion when Madiba was televised with political leaders, President Jacob Zuma and Cyril Ramaphosa. You could see Madiba was not fully there. He did not speak. He was not connecting. My friend was no longer himself. It was an affront to Madiba’s dignity,” Tutu added.

But not all bishops support aid-in-dying legislation, including the current Archbishop of Canterbury, putting Tutu at odds with church teaching.

Leaders of Britain’s major faiths issued a joint rebuttal to the bill, led by Lord Charles Falconer, calling it a “grave error” which would have a “serious detrimental effect” on society.

The Most Rev. Justin Welby, the Archbishop of Canterbury, Cardinal Vincent Nichols, leader of the Roman Catholic Church in England and Wales, and the Rev. Martyn Atkins, general secretary of the Methodist Church, are among the 23 leaders who issued a direct plea to the British Parliament before the bill’s hearing.

“As leaders of faith communities, we wish to state our joint response to Lord Falconer’s Assisted Dying Bill,” according to the editorial published in The Telegraph. “We do so out of deep human concern that if enacted, this bill would have a serious detrimental effect on the well-being of individuals and on the nature and shape of our society.”

However, George Carey, the former Archbishop of Canterbury, said it would not be “anti-Christian” to change the law on assisted dying, reflecting Tutu’s concerns about aggressive end of life treatments.

“Until recently, I would have fiercely opposed Lord Falconer’s Bill. My background in the Christian Church could hardly allow me to do otherwise,” he wrote in an editorial published in the Daily Mail. “Today we face a terrible paradox. In strictly observing accepted teaching about the sanctity of life, the Church could actually be sanctioning anguish and pain — the very opposite of the Christian message.”

On July 18, after nearly 10 hours of debate in the House of Lords, the bill progressed to committee. In 2006, a similar attempt to legalize assisted dying for terminally ill, mentally competent adults failed to progress this far.

AIDINDYING_BRITAINAccording to the Assisted Dying Bill, a terminally ill adult with a life expectancy of less than six months may request life-ending drugs from his or her doctor. Prospective patients must be informed about palliative medicine and other end of life treatments, and self-administer the drugs. Adults facing Alzheimer’s and dementia, even if terminally ill, would not be eligible.

The Church of England operates similar to a confederation, with autonomous provinces around the world sharing a common tradition. Churches officially recognized as part of the Anglican Communion include the Episcopal Church of the United States, the Anglican Church of the Southern Cone of America and the Anglican Church of Southern Africa. It is the third largest Christian tradition.

The Very Rev. Matthew L. Buterbaugh of St. Matthew’s Episcopal Church in Kenosha, Wis., told Life Matters Media churches in the Anglican Communion have a history of intense debate over social issues.

“It is interesting the former Archbishop of Canterbury supports it and the current one does not, and the one in the middle, Rowan Williams, has said nothing. I would be surprised if Britain did not go forward with the bill, given my understanding of English politics,” Buterbaugh said. The Archbishop of Canterbury is considered the first bishop among equals, and local provinces may disregard his opinions.

“The last time aid-in-dying was debated in the Episcopal Church was in the early 90s. We have an official policy saying we oppose it, but one of the overarching themes of Anglicanism, is that you will have lots of wiggle room,” he added. “I’ve been around a lot of people who’ve died, and in my own opinion, keeping people unnaturally alive for so long prolongs human suffering. In some cases, aid in dying could be a humane option.”

Cartoonist Roz Chast Takes On Eldercare

Posted on Wednesday, July 23rd, 2014 at 8:49 am by lifemediamatters

This piece was first published in Reuters Health. President Randi Belisomo is a contributor.

Cartoonist Roz Chast, famous for her deceptively simple drawings in The New Yorker magazine, is now touching a chord with the “sandwich generation” with her wryly sensitive graphic memoir about caring for her aging parents.

Readers of her new book, “Can’t We Talk About Something More Pleasant?” see their own experiences reflected in Chast’s sketches of her struggles caring for George and Elizabeth, her stubborn, quirky, “codependent” Jewish parents in Brooklyn.


Roz Chast

Blunt but witty, her words and images have sparked thousands of letters from caregivers nationwide. “They all say nobody talks about it,” Chast told Reuters Health.

Topping The New York Times graphic books best seller list for nine weeks, her story may help lift the silence among those with aging and ill parents.

“I get nervous checking my webmail, because I can’t respond to all these people,” Chast said. “Whether they are Midwestern Lutherans or Jewish girls from Brooklyn, details are different, but the story is the same.”

Chast didn’t know how to broach the painful issues of eldercare with George and Elizabeth, who lived independently into their 90s. “I didn’t want to bring up these issues, but there comes a time you have to,” she said.

The drawings show how Chast hired an elder lawyer, someone better able to tactfully address medical options. Elizabeth, a self-described “Jewish Christian Scientist,” informs the attorney that hospitals are where “you go to die” and that doctors “have a God complex.” Her preferences, however, are clear, and emphasized in capital letters. Elizabeth does not wish to become “A PULSATING PIECE OF PROTOPLASM!”

Hospitals cannot be avoided. George breaks a hip, and Elizabeth’s diverticulitis worsens. George’s fracture leads to a rapid decline. “He wanted to pack it in,” Chast said. “My mother was furious, because she wanted him to fight.” His physician recommends hospice.

“Hospice is a very strange thing,” Chast said. “You can sugarcoat it anyway you want, but basically it means we are not going to do more because there is nothing more to be done.” Elizabeth remains in denial, insisting soup will do the trick.

Elizabeth survives George by two years, a financial drain Chast describes candidly. “If she lived another year, I would have had to take a second mortgage or go into our savings for our kids’ college,” Chast said. “I was really starting to fray.”

The seven thousand dollar monthly facility fee prompts a bedside conversation, recommended by a hospice aide, in which she tells Elizabeth “you are running out of money.” Elizabeth dies days later.

“It was shocking that I said that, but the hospice people knew I was starting to freak out,” Chast said.

Its wit, realism and willingness to shatter taboos make this memoir a must-read for those facing similar circumstances, many health providers say. It is one of several graphic books released in recent years addressing serious illness and death in what is called a “golden age of comics” in healthcare by Penn State University humanities and medicine professor Michael Green.


Comic Courtesy Roz Chast

“It does a fantastic job exploring ambivalences, challenges and mixed feelings one has around these issues,” Green told Reuters Health. Graphic stories such as Sarah Leavitt’s “Tangles” and Brian Fies’ “Mom’s Cancer,” he said, provide nuanced perspectives on the multi-dimensional topic of end of life care.

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Medicare Revises Hospice Drug Policy, Local Providers Relieved

Posted on Tuesday, July 22nd, 2014 at 7:39 am by lifemediamatters

Under nationwide pressure from hospices experiencing financial and administrative strain due to a newly implemented policy, the Centers for Medicare and Medicaid Services is revising its own guidance that was intended to help avoid duplicate payments for prescription drugs. This change of course comes two months after the CMS rule’s effective date, months in which providers say the policy jeopardized patient access to end of life care.

SyringeIn May, CMS began to require a prior authorization process for hospices and Medicare Part D providers in order to determine responsibility of drug coverage. Hospices were charged with covering medications not related to the hospice, or terminal, diagnosis. Previously, hospices paid only for drugs needed for symptom management, and Part D policies covered medications for hospice patients’ unrelated conditions.

“Based on discussions with stakeholders, we are adjusting our rules so that beneficiaries enrolled in hospice will continue to have access to their medications while balancing recommendations by the Inspector General meant to safeguard the Medicare program,” said Raymond Thorn of the CMS Office of Communications.

The Office of the Inspector General had recommended the policy’s implementation to minimize mistakes in which Part D plans covered hospice drugs. However, the more than 40 healthcare organizations and hundreds of hospice providers that have lobbied against the rule in recent weeks maintain it unduly burdened beneficiaries, requiring dying patients to navigate payer disputes.

“CMS listened when they convened all the various stakeholders, and heard a unified message focused on protecting beneficiaries from an onerous and insensitive prior authorization process,” said Jonathan Keyserling, Senior Vice President of the National Hospice and Palliative Care Organization. “The announcement of significant modifications in the previous guidance will greatly relieve the stress that patients and families, as well as providers, were experiencing under the prior flawed process.”

Under the revised policy, CMS expects Part D sponsors to use hospice prior authorization only on four drug catagories typically covered under the hospice benefit. They include analgesics, anti-nauseants, laxatives and anti-anxiety medications.

“Barriers to access should be minimized,” Thorn said, as the number of these claims are expected to be minimal.

Providers say the original guidance lengthened admission processes; they maintain it often deterred patients from hospice support if medications taken for decades, psychiatric drugs for example, would not be covered upon enrollment.

“We had changed our admission documentation, and we were starting to have those conversations with new admissions,” said Greg Zrazik, Chief Financial Officer of Angels Grace Hospice in Chicago’s southwest suburbs. “We have been looking at the drugs, trying to determine what we felt we would pay for, what would be paid for by Part D and aggressively looking at things they could consider stoping or could pay for themselves.”

Angels Grace has experienced a 30 percent uptick in drug costs since the rule took effect. Serving 45 patients a day, the hospice experienced a “huge burden” that threatened its financial future; average daily Medicare hospice reimbursement is $160.

“This puts things back to if hospices are doing the right thing, we would certainly recommend a patient come off of drugs that aren’t appropriate,” Zrazik said. “But we don’t have to be aggressive, or make patients make difficult decisions.”

Hospices may realize instant efficiency as a result of this revision, providers say.

“We don’t have to be focused so much on the rigamarole of all the paperwork, and instead we can think more about what the patient and family needs and spend time with them,” said Martha Twaddle, medical director of Journeycare, a hospice serving 500 patients daily across northern Illinois.

Time and personnel are the most important resources a hospice has, said Twaddle, and the extra work the guidance required was threatening the long-term sustainability of quality bedside care.

The tone of the CMS guidance and the agency’s willingness to reverse course are encouraging to end of life care providers.

“If we are going to do good care for Americans, we have to be working together, changing models of delivery and be willing to change ourselves,” Twaddle said. “This is a fabulous sign.”