End-of-Life Choice, Death with Dignity, Palliative Care and Counseling

Archive for September, 2011

Missoulian Wins U.S. Award for Work to Protect Aid in Dying

HELENA, MT – Compassion & Choices, the nation’s oldest and largest nonprofit
organization working to improve care and expand choice at the end of life, today
announced it will award Missoula resident Dustin Hankinson its 2011 Hugh Gallagher
Award. Hankinson, a 35-year-old  living with muscular dystrophy, has worked for the
rights of persons with disabilities for a decade. During the past two years, Hankinson
helped lead the fight to preserve the right of all Montanans, to aid in dying. “I am a
Montanan living with a disability,” Hankinson said, “Like most Americans, including those
living with disabilities, I support the right of terminally ill Montanans to make their own
end-of-life decisions. For decades, people with disabilities have fought for the right to
autonomy in life decisions. I am proud to stand in the line that Hugh Gallagher started.”

The Hugh Gallagher Award is given annually to an activist who, within the past year, has
been the most effective in communicating – especially to those of diverse age, race,
religion, ethnicity, sexual orientation or physical abilities – the importance of better care
and expanded choice at the end of life.

Dustin will accept the award at a ceremony in Washington, D.C., on October 4, 2011.
The award commemorates the significant contributions of Hugh Gallagher, a national
leader in protecting the rights of people living with disability, and those with a terminal
illness. Gallagher wrote to highlight injustice, to promote understanding among diverse
communities including individuals living with disabilities, and to further the cause of
dignity and choice.

“Dustin Hankinson has demonstrated courageous passion and innovative leadership on
behalf of better choice and information for those facing the end of life,” said Barbara
Coombs Lee, president of Compassion & Choices, in announcing the award. “He is a
champion for individuals living with disabilities and for choice that respects the beliefs
and values of all individuals.”

Hankinson’s willingness to speak openly from the perspective of a person living with a
disability was paramount in successfully protecting choice at life’s end. In 2011, two bills
introduced in the state Senate threatened to curb the right to aid in dying, established by
the Montana Supreme Court in the Baxter decision. Hankinson blogged, wrote letters to
the editor, contacted every member of the legislature and submitted testimony to the
Senate Judiciary Committee. A bipartisan majority of the Senate Judiciary Committee
rejected each bill and the legislature adjourned without weakening Montanans’ access to
aid in dying.

“These are my end-of-life choices that you are considering,” Hankinson wrote. “Concern
about my vulnerability should not be used to deprive others of their end-of-life rights.”

To schedule an interview with Dustin Hankinson, please call Jessica Grennan,
406.360.6043; [email protected]


Preparing for life’s final stage

By Warren Wolfe
Star Tribune

Soon after he joined the staff at Gundersen Lutheran Hospital in La Crosse, ethicist Bud Hammes concluded that too many patients were dying the wrong way.

“Instead of spending their final days and weeks in relative comfort, surrounded by family and friends, they were exhausted, in pain or sometimes in a drugged stupor,” said Hammes, who holds the unusual title of director of medical humanities.

“It was care nobody wanted,” he added, “and nobody knew how to stop it — not patients, not families and not the doctors.”

As a result, Hammes launched an experiment called Respecting Choices that has transformed medical care at the end of life in this Wisconsin border city of 51,000.

Today, 96 percent of the hospital’s patients — 10 times the national average — have thought about, and written down, specific instructions for end-of-life care.

Now two decades old, the La Crosse program has become an international model for end-of-life medical planning and is about to debut on a much larger stage — the Twin Cities.

“We’ve had living wills and advanced directives in various forms over the years,” said Sue Schettle, CEO of the Twin Cities Medical Society, the professional association for local doctors, which is coordinating the Minnesota campaign. “We’ve made progress in the past, but this feels very different — more like a community conversation.”

Working with the Citizens League, Twin Cities Public Television and several Minnesota insurers, the doctors’ group will roll out a two-year campaign of broadcasts, community meetings and other events in an effort to change the way people in the Twin Cities think about and plan for medical care in their final months.

On a recent day at Gundersen, Aggie Tippery, 82, changed her care preferences while working through a Respecting Choices document with a counselor.

“You know, I’m kind of used to being in charge of myself,” said Tippery, who lives in Hokah, Minn., across the Mississippi River from La Crosse. “I don’t want to give up control just because my body starts giving out — especially then.”

Conversations like that happen every day at Gundersen and its 40 clinics in Wisconsin, Iowa and Minnesota.

But they also come up in area coffee shops, law offices, churches, beauty parlors and family gatherings.

“Really, this is as much about how we’ll live at the end of life as about the kind of care we want when we’re dying,” said La Crosse attorney Maureen Kinney, who incorporates that discussion into her practice.

“We don’t always talk about death around here,” she said, “but it’s become more or less a normal conversation.”

Fine-tuning care choices

Respecting Choices works with patients in three stages: General medical decisions while they are still healthy, perhaps at middle age; updated specific choices as they develop chronic diseases; and finally a Provider Order for Life Sustaining Treatment (POLST), a formal document signed by their doctor, when it’s clear that death could come in the next year or so.

As patients develop more complex conditions, their end-of-life care options often become more complex. Doctors, nurses and trained counselors then help patients explore the impact of various treatments — chemotherapy, CPR, antibiotics, heart surgery, dialysis or other weapons against disease.

At its heart, Hammes said, Respecting Choices “is a process, a series of conversations over years” with family, health professionals and maybe a trained counselor.

While it is not designed to reduce health care spending or steer patients away from aggressive treatment, experts say that having better-informed consumers could have the effect of reducing unwanted or unnecessary care. At Gundersen, for example, the cost of caring for a patient during the last six months of life is one-third below the national average — $12,500 vs. $18,200.

“This is not a ‘death panel’ kind of thing,” Hammes said, referring to fears that such conversations are designed to hasten death of expensive patients.

“You may want less invasive care at the end of life. Many people do,” he said. “But some want to get everything that might help — for religious, or family or other reasons. And that’s fine.”

Still, Hammes figures that while the program costs the hospital several million dollars a year in staff time, it also saves the hospital some — he’s not sure how much — by reducing costs of unwanted care.

‘This feels very different’

Already, 16 Twin Cities area hospitals and clinics have begun pilot programs to use the tool, called Honoring Choices Minnesota. With some room for local variation, the new program follows Gundersen’s protocols. That includes making sure that the patient’s Honoring Choices documents are entered in their electronic health records so that they can be consulted instantaneously — which can be critical in emergency situations.

Rival health providers and insurers in the Twin Cities also are collaborating to introduce the program throughout the community — and to ensure that patients’ plans are followed by doctors, hospitals, nursing homes, ambulance crews and other health professionals.

Like the La Crosse program, Honoring Choices goes beyond simply filling out a form. It focuses on choosing an advocate to speak for the patient if necessary, and fine-tuning end-of-life decisions as the patient’s health changes.

Allina Hospitals and Clinics, with more than 800,000 patients, was the first to start an Honoring Choices pilot program, in 2008. Now it has been implemented system-wide.

One result: About 38 percent of Allina hospital patients older than 65 have an end-of-life document on record, more than double the figure in 2007.

“Families and patients say they’re highly satisfied with the experience, even though some said they first thought talking about death would be too sad,” said Sandra Schellinger, a nurse practitioner who helped implement the program at Allina.

“The topic can seem daunting,” she added. “But the results typically bring great satisfaction — and ultimately better care at the end of life.”

On Monday evening, Philip Friest, 82, spent two hours with an Allina counselor and his two children at his Burnsville apartment creating a new advanced care directive to replace the one he did years ago in his attorney’s office.

“I feel better,” said the retired accounting professor from the University of Minnesota-Duluth. “We talked about things we’ve never talked about before — medical decisions, but really quality of life decisions. I trust my kids to do the right thing, but now they know what I think the right thing is.”

Consultation, and surprise

Aggie Tippery was certain she knew what choices she would want for end-of-life care. It was an exercise she’d been through before — first with her husband, who died two years ago, then filling out her own advance directive.

But with her health growing more fragile, it was time to enter the second phase of planning for the care she may want at the end of life.

With her son, Jim, beside her, Tippery sat down one afternoon in a Gundersen conference room with counselor Rita Erlandson.

The result surprised her.

She was clear on most of her choices: No CPR. No dialysis. A nursing home if necessary. And at first, she was ready to have doctors use machines to keep her going even if she no longer could communicate with people.

“Wait! Is that what they call brain dead?” she asked. “Oh, no. I guess I hadn’t worked that one out yet. If my brain is already checking out, let my body check out, too.”

Doctors, too, have noticed changes.

“We’re trained to fight to the death over a patient’s disease, and sometimes that’s not what the patient wants,” said Dr. Ben Waldro, who was just coming off the night shift at Gundersen’s emergency center.

“When the ambulance comes screaming up here after your heart attack or stroke or accident, I absolutely want to know your instructions for me. Nine times out of 10, I can punch that up on the computer immediately,” he said. “That makes me a better doc.”

The Rev. Mark Jolivette has seen a change in the way many of his parishioners at Our Savior’s Lutheran Church in La Crosse are prepared for dying.

“Talking about death and dying is not easy for most people, but it’s important,” he said. “Talking and planning can help dispel the demons we sometimes create. We don’t hide from death quite as much anymore.”

Celebrating Alzheimer’s Action Day (9.21.11)

Alzheimer’s and dementia represent an international public health crisis. Current estimates suggest that 36 million people worldwide are living with dementia; this number is expected to double by 2030 and more than triple by 2050. The total worldwide costs of dementia are estimated at $604 billion.

This Alzheimer’s Action Day, health care systems all over the world are facing the daunting challenge of meeting the needs of individuals with Alzheimer’s. In almost every country, the proportion of people over the age of 60 is growing faster than any other age group as a result of both longer life expectancies and declining birth rates. This will only make the Alzheimer’s challenge even greater.

In the United States alone, an estimated 5.4 million Americans are living with this devastating, heartbreaking disease that slowly steals a person’s memories, independence, control and eventually life. Alzheimer’s is not normal aging, although advancing age is the greatest risk factor. Among those 65 and older, one in eight has the disease and nearly half of individuals age 85 and older do. Alzheimer’s and dementia doesn’t just affect individuals; they also affect the nearly 15 million family members and friends who provide care for loved ones with this disabling condition. Alzheimer’s is the sixth leading cause of death in the U.S. and the only one of the top 10 without a way to prevent, cure or even slow its progression.

But there is hope.

The National Alzheimer’s Project Act was passed unanimously by Congress and signed into law by President Barack Obama on January 4, 2011. It requires the federal government to create a national strategic plan to address the rapidly escalating Alzheimer’s crisis, coordinate Alzheimer’s disease efforts across the federal government and annually assess if the nation is meeting the challenges of the disease for families, communities and the nation’s health care system.  Enactment of the National Alzheimer’s Project Act was a significant victory for the Alzheimer’s cause.To date, the federal government’s commitment to fighting Alzheimer’s has not reflected the expanding human, social and economic burden of the disease. Even where the federal government has acted, the efforts have been spread across multiple federal agencies with no one responsible for coordinating these efforts. This has often led to fragmentation of responsibility, duplication of effort and conflicting roles. But, with the development of a focused, strategic plan, we now have the opportunity to create the same success that has been demonstrated in the fights against other diseases such as HIV/AIDS, heart disease, prostate cancer, breast cancer and stroke. Because of a strong governmental commitment to fight these diseases, deaths from HIV/AIDS, heart disease and some cancers have decreased throughout the last decade, while the number of deaths from Alzheimer’s increased 66 percent between 2000 and 2008.

As the world’s leading voluntary health organization in Alzheimer’s care, support and research, the Alzheimer’s Association is dedicated to supporting the development and implementation of a National Alzheimer’s Plan with outcome-driven objectives and accountability. The Association is also committed to ensuring that a broad and diverse array of perspectives are included and considered in the plan’s development. This is why, throughout August and September, the Association hosted public input sessions throughout the country.

Building on the Association’s commitment to provide platforms of engagement for those directly affected by Alzheimer’s, the public was invited to attend these events and share their views on what an effective National Alzheimer’s Plan should include. The input gathered from these sessions as well as comments submitted to www.alz.org/napa will be collected and developed into a report that will be presented to Administration officials, representatives from the Department of Health and Human Services and the Advisory Council on Alzheimer’s, Research, Care and Service. On this Alzheimer’s Action Day, the Association honors those thousands of Americans who came to these input sessions and made their voices heard.

We know time is of the essence. With an aging baby boomer population at increased risk for developing this disease with each passing year, the time to address this public health crisis is today. On this Alzheimer’s Action Day, during World Alzheimer’s Month, we celebrate the landmark opportunity that the National Alzheimer’s Project presents – a real, concrete opportunity to change the trajectory of this disease – once and for all.

To learn more about the National Alzheimer’s Project Act, visit www.alz.org/napa. For more information on the Alzheimer’s Association visit http://www.alz.org/, “like” us on Facebook page or follow us on Twitter.

The end of Alzheimer’s starts with you.

Brass City Hospitals To Merge

WATERBURY — Waterbury Hospital officials announced August 23 a letter of intent to merge with crosstown counterpart St. Mary’s Hospital, a deal that if approved by regulators, would create one of Connecticut’s largest hospitals.

The combined joint venture would also include Texasbased LHP Hospital Group, which agreed earlier this year to buy a stake in St. Mary’s Hospital.

As part of the proposed agreement, members of the new joint venture said they would invest $400 million to construct a new state-of-the-art medical center that will replace both Waterbury Hospital and St. Mary’s.

LHP would own 80 percent of the combined joint venture, with Greater Waterbury Health Network, parent of Waterbury Hospital, and St. Mary’s each owning a ten-percent stake. Governance in the for-profit entity will be shared among all three parties.

The combined revenue of both hospitals will be more than $520 million, making it one of the larger hospitals in the state.

Officials said the combined joint venture will commit to operate its health care facilities in accordance with the “community benefit standards” applicable to not-for-profit health care systems, and will also operate in accordance with the Ethical and Religious Directives for Catholic health care services.

Meanwhile, the affiliation will allow Waterbury Hospital to retire its existing debt, provide security for its pensioners, leverage economies of scale for access to capital and purchasing power, and share clinical best practices, hospital officials said.

“The combined joint venture between LHP/St. Mary’s and Waterbury Hospital is the realization of a shared vision to create a combined health care-delivery system to serve the greater Waterbury community,” said Robert Mazaika, chair of the St. Mary’s Joint Venture Task Force. “The Waterbury Hospital and St. Mary’s have collaborated on a number of successful ventures over the years — including the Harold Leever Regional Cancer Center and the Heart Center of Greater Waterbury — that have greatly benefited the community. Now we have the opportunity to transform the delivery of local health care as a combined system.”

“This is a momentous day for Waterbury Hospital and the community we serve,” said Carl Contadini, chairman of the Waterbury Hospital Board of Trustees. “After thoroughly analyzing the health-care needs of the greater Waterbury region, we concluded that coming together with LHP and St. Mary’s to build a modern, state-of-the-art replacement facility would bring the best in health care to patients for generations to come. We will not only create new construction jobs and help the local economy but we will position the greater Waterbury community to become the regional leader for health-care services in southern New England.”

The next steps in the transaction will be to complete customary due diligence, negotiate and finalize a definitive agreements, and obtain the necessary approvals from various regulatory bodies.


Peace at Life’s End. Anywhere. Son of Evicted Elderly Couple, Patients’ Rights Group Launch Campaign to Protect End-of-Life Rights Nationwide Campaign Will Publicize Legal End-of-Life Options

DENVER, CO – Compassion & Choices, the nation’s oldest and largest nonprofit organization working to improve care and expand choice at the end of life, today launched a national campaign to publicize legal options for peaceful dying. “Peace at Life’s End. Anywhere” aims to inform the public, the media and healthcare providers—especially assisted-living facilities—of end-of-life choices available in every state. The campaign was prompted by the eviction of an elderly New Mexico couple from their assisted-living facility for exercising their right to stop eating and drinking. Their son, Neil Rudolph, of Alamosa, Colorado, will co-chair the campaign. He begins a national speaking tour on Thursday in Pueblo and Colorado Springs to highlight people’s legal options for achieving peace at life’s end, wherever they live.

“No one must suffer needlessly at life’s end,” said Compassion & Choices President Barbara Coombs Lee. “Most Americans want to die peacefully, at home, without unbearable pain and suffering. Yet all across our nation every day, every week, Americans needlessly suffer bad deaths. Options for peaceful dying exist in every state. Most Americans don’t know they have the right to exercise these options. Unfortunately, some may try to obstruct the exercise of those rights, so advance planning is important. Today, we are launching a national education campaign to inform Americans of choices for a peaceful death, wherever they live.

”In 2003, the New England Journal of Medicine published the results of a survey of hospice nurses. Reports from nurses who had cared for patients who deliberately hastened their imminent death by voluntarily stopping eating and drinking (VSED) indicate such patients usually die a “good” death within two weeks after forgoing food and fluids.

“When the quality of my mom and dad’s lives started to deteriorate due to their extremely advanced age,” Neil Rudolph told a Denver news conference,“they decided they wanted to control their deaths and die peacefully at home. They discussed their views with my sister and me, and with their attorney. We called Compassion & Choices and spoke to a counselor. My parents decided to voluntarily stop eating and drinking.

“They met resistance from their assisted-living facility and had to move to a new home,” said Neil. “The Village at Alameda failed to respect my parents’ autonomy, imposing tremendous stress upon them when they should have been supported, not thwarted. The Village is not unlike thousands of assisted-living facilities in the country.

“Nearly one million Americans live in these facilities, yet most don’t know how their end-of-life rights could be infringed upon as my parents’ were. Their eviction shocked me. I think it’s inhuman for mentally competent adults to be overruled at the end of their lives by an assisted-living facility administrator, or by anyone else. My parents had every right to stop eating and drinking. The mistreatment of my parents should not be repeated. That’s why I’m working with Compassion & Choices to increase awareness of legal end-of-life options, especially VSED, and to make it respected and honored across the country. I hope my parents’ experience can be the platform that improves end-of-life choice for others.”

Applicants to assisted-living facilities should review the facility’s offered contract carefully and negotiate clarity on any points regarding end-of-life decisions they may consider. Compassion & Choices’ Web site hosts a printable contract rider for those entering assisted-living facilities to help ensure their end-of-life choices are respected.

Even in states without an explicit legal framework, no one must suffer needlessly at life’s end. Compassion & Choices’ EOLC Program team stands ready to help all terminally ill and mentally competent patients—as well as those who just want to plan ahead—understand their options at life’s end, how to access comfort care and facilitate a peaceful death.To learn more, please contact Compassion & Choices’ End-of-Life Consultation Program at 1.800.247.7421.

Compassion & Choices also announced they will offer advocacy and legal assistance to help any individual encountering obstacles in their rational, well-considered plan to stop eating and drinking to achieve a peaceful death. Further, they will defend any healthcare provider facing sanction due to their medical and palliative support for a patient making a rational, well-considered decision to stop eating and drinking to achieve a peaceful death.

For more information please visit www.CompassionAndChoices.org/VSED.