The Life Matters Media Newswire aims to serve as a comprehensive portal of all news related to end of life decision making and care. We aggregate stories from other media outlets in one place- here, where you can access them easily. We also strive to produce original content covering stories we feel are receiving scant attention.

Chicago Cultural Center Hosts “Death With Dignity” Event

COMPASSION&CHOICESHundreds gathered at the Chicago Cultural Center to learn about and debate so-called “Death with Dignity” legislation on Saturday. The event, sponsored by nonprofit advocacy group Compassion & Choices, included a panel discussion and screening of How to Die in Oregon, a 2011 documentary exploring the state’s physician-assisted suicide law.

“This is not about a political stance, it’s too personal,” said Compassion & Choices President Barbara Coombs Lee during the panel discussion. “Seventy-four percent of people in the United States believe that folks should have the choice of aid-in-dying. This cuts across all population areas and demographics.”

Proponents of “Death with Dignity” legislation argue that such laws increase patient autonomy at the end of life, because the seriously ill can avoid suffering and die on their own terms. In Oregon, the first state to legalize physician-assisted suicide, terminally ill adults in their last months of life may self-administer a prescribed lethal dose of barbiturates.

Brittany Maynard has changed everything. She has single-handedly transformed our whole movement from from one organization working actively in the field to a broad movement where all kinds of people are introducing bills and filing lawsuits and becoming active,” Lee added. “We will see bills advancing in many, many states. Her brazen visibility helped to increase momentum.”

Maynard, a 29-year-old newlywed, moved to Oregon from California to take advantage of the state’s “Death with Dignity” law and ingested a lethal dose of doctor-prescribed barbiturates in November. After being diagnosed with an aggressive brain tumor in January, she chose to become a national spokesperson for Compassion & Choices. News of her death made headlines across the world and sparked social media debate regarding hastening death.

“Now that I’ve had the prescription filled and it’s in my possession, I have experienced a tremendous sense of relief. And if I decide to change my mind about taking the medication, I will not take it,” Maynard wrote in an op-ed published by CNN shortly before her death. “Now, I’m able to move forward in my remaining days or weeks I have on this beautiful Earth, to seek joy and love and to spend time traveling to outdoor wonders of nature with those I love. And I know that I have a safety net.”


News of Brittany Maynard’s death made headlines across the globe

Lee said many patients who fill their prescriptions for life-ending drugs never take them, because they only want the option of ending life. About 800 individuals have used the Oregon law to die since it was enacted in 1997.

But some disability rights groups, medical providers and religious organizations, including the Roman Catholic Church, maintain that physician-assisted suicide is unnecessary and endangers the most vulnerable patients.

No physician, bioethicist or critic of physician-assisted suicide was represented on the panel, moderated by Alison Cuddy, program director of the Chicago Humanities Festival.

The American Medical Association, the nation’s largest physician organization, strongly opposes physician-assisted suicide. The AMA maintains the policy is incompatible with physicians’ role as healer.

“It is understandable, though tragic, that some patients in extreme duress – such as those suffering from a terminal, painful, debilitating illness – may come to decide that death is preferable to life,” according to an AMA statement sent to Life Matters Media. “However, allowing physicians to participate in assisted suicide would cause more harm than good. Physician-assisted suicide is fundamentally incompatible with the physician’s role as healer, would be difficult or impossible to control, and would pose serious societal risks.”

According to a 2013 poll conducted by the New England Journal of Medicine, 67 percent of more than 1,700 of its U.S. readers were against physician-assisted suicide.

Members of Not Dead Yet, a national disability rights group that opposes all forms of aid-in-dying legislation, turned out to voice opposition to “Death with Dignity” and the documentary, which centers on a terminally ill cancer patient who ingested a lethal dose of doctor-prescribed drugs.

“We want to make sure the disability angle is included, because all too often, people with disabilities voices are not heard or are stigmatized. We are here to ensure the audience understands that not everybody with a terminal illness wants the right to death,” said Scott Nance, a member of the nonprofit.

Physician-assisted suicide is legal in four other U.S. states: Washington, Vermont, Montana and New Mexico.

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Medicare Declines To Reimburse Physicians For End Of Life Discussions In 2015

Courtesy WikiMedia Commons

Courtesy WikiMedia Commons

The Centers for Medicare & Medicaid Services has tabled plans to reimburse medical practitioners for end of life conversations with seriously ill and elderly patients, despite broad support within the medical community. CMS is accepting public comment on the decision through December 31.

The 2015 Medicare Physicians Fee Schedule, an 1,100 page document, incorporates billing codes that serve as a guide to how Medicare will reimburse various services. Two billing codes for advance care planning services submitted by the American Medical Association were acknowledged but not approved for payments.

For example, billing code 99497 would have reimbursed practitioners for 30-minute advance care planning sessions with patients and families, during which advance health care directives would be explained, and even completed. The 2015 code does not authorize payment for the discussion. CMS declined to comment.

Similar proposals were removed from the Affordable Care Act in 2010 after political opponents associated advance care planning sessions with “death panels,” a widely discredited accusation.

Advance care planning codes

Advance care planning codes

The decision to delay reimbursement was met with disappointment from end of life care advocates and some medical organizations. The American Academy of Hospice and Palliative Medicine is circulating a petition and urging practitioners to voice support for end of life conversation reimbursement.

“It seems like a short-sighted omission on the part of CMS,” said Dr. Porter Storey, executive vice president of the AAHPM. “It seems to me that there are a lot of important discussions that need to take place as people get sicker to help them get the care they want. I have every intention of submitting a comment personally.”

The AMA delayed commenting on the matter, as future coverage remains under consideration by CMS.

Thaddeus Pope, director of the Hamline University Health Law Institute, said the CMS delay could be due to implementation issues or politics.

“They are seeking comments and are planning to roll it out – presumably now in 2016,” he said. “After decades of inadequate reimbursement, we can wait one more year. Fortunately, many private insurers are already reimbursing well for advance care planning.”

The hope among supporters is that doctors will encourage more seriously ill patients to complete advance health care directives and identify “goals of care” if they are reimbursed for their time. As millions of baby boomers age, interest in advance care planning has grown. However, according to the Institute of Medicine’s newly released Dying in America, most Americans lack basic understanding about end of life care choices.

“We know a lot of things about how physicians behave, and they respond to incentives,” said Dr. Ziad Obermeyer, an emergency medicine physician at Brigham & Women’s Hospital in Massachusetts. “Currently, physicians are discouraged against having these discussions, because they have to take time from things that are reimbursed, and these conversations are also really difficult to have.”


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Hospice Leads To Better Care, Lower Costs At End Of Life: JAMA

Clinicians in ICU. Courtesy WikiMedia Commons.

Clinicians in ICU. Courtesy WikiMedia Commons.

Terminally ill patients enrolled in hospice care have lower rates of hospitalization, intensive care unit admission and invasive procedures at the end of life, according to an extensive new study published in the Journal of the American Medical Association. Hospice patients also incur significantly lower medical costs than non-hospice patients.

Researchers, led by Dr. Ziad Obermeyer, an emergency medicine physician at Brigham & Women’s Hospital, studied hospice and non-hospice patients using a nationally representative sampling of Medicare fee-for-service beneficiaries who died in 2011. Some 18,000 patients with poor-prognosis cancers (brain, pancreatic, metastatic malignancies) enrolled in hospice care before death were matched to an equal number of similar patients who died without hospice support. Median hospice stay was 11 days.

The average costs of care for patients in their last year of life in the non-hospice group was $71,517, compared to $62,819 for those enrolled in hospice; savings totaled close to $9,000. The study also revealed a huge disparity: 74 percent of patients in the non-hospice group died in a hospital or nursing home, compared to just 14 percent of hospice patients. Recent studies indicate the vast majority of Americans wish to die at home, but rarely do.

Dr. Ziad Obermeyer

Dr. Ziad Obermeyer, lead researcher

“While enrolled in hospice, beneficiaries were hospitalized less, received less intensive care, underwent fewer procedures and were less likely to die in hospitals and skilled nursing facilities,” researchers write. “Over similar periods before death, most non-hospice beneficiaries were admitted to hospitals and ICUs for acute conditions not directly related to their poor-prognosis cancer. Such care is unlikely to fit with the preferences of most patients.”

Hospice care is designed to help comfort the seriously ill near the end of life, and it has become increasingly popular in recent years – reaching nearly $14 billion in payments during 2011. The Medicare hospice benefit, established in 1982 to help patients pay for care, is usually provided only to those with a life expectancy of six months or less.

The findings also highlight the importance of frank, honest discussion between doctors and patients about goals of care. The Centers for Medicare and Medicaid Services is debating the risks and benefits of reimbursing physicians for end of life discussions, proposals removed from President Obama’s Affordable Care Act.

Dr. Joan Teno, associate director of the Center for Gerontology and Health Care Research at Brown University Medical School, says that the cost savings associated with hospice care are much less important than the health benefits it provides seriously ill patients.

“A key policy concern is if hospice saves money, should health care policy promote increased hospice access? Perhaps an even larger policy issue involves the role of costs and not quality in driving U.S. health policy in care of the seriously ill and those at the close of life,” she writes in an accompanying editorial. “The general expectation is that persons who choose to enroll in hospice should not die in an acute care hospital, and their hospital expenditures should be less than if they were not enrolled in hospice.”

A recent study led by Teno suggests some newer for-profit hospice programs have accepted patients too early and discharged others when the costs of caring for them rose. Nearly 20 percent of U.S. hospice patients are discharged before death, and not-for-profit and government-run hospices have lower rates of discharge than newer for-profit programs, according to the findings published in the Journal of Palliative Medicine.

“Dying patients are a vulnerable population and often are impoverished, frail, older, and cognitively impaired,” she adds. “As both private insurers and Medicare change the financial incentives in health care from doing ‘more’ to ‘less,’ there is an increased need for transparency and accountability.”

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American Medical Association Opposes “Death With Dignity,” Despite Calls For Legalization

Despite calls for legalization from a growing number of proponents and others who came to support physician-assisted suicide in the wake of the high-profile death of Brittany Maynard, the American Medical Association remains firmly opposed to such policy.

Maynard, 29, moved to Oregon to take advantage of the state’s physician-assisted suicide law and ingested a lethal dose of doctor-prescribed barbiturates in November. She had been diagnosed with an aggressive brain tumor in January. Oregon is one of five U.S. states where physician-assisted suicide is legal; legislatures in Washington, Vermont, Montana and New Mexico have also passed measures to enact what supporters call “Death with Dignity” legislation.

The Chicago-based AMA is the nation’s largest organization of physicians and represents nearly 200,000 doctors, medical students and residents. Its policy remains unmoved amid a national debate regarding the risks and benefits of physician-assisted suicide.


Brittany Maynard’s decision made headlines across the globe

“It is understandable, though tragic, that some patients in extreme duress – such as those suffering from a terminal, painful, debilitating illness – may come to decide that death is preferable to life,” according to an AMA statement sent to Life Matters Media. “However, allowing physicians to participate in assisted suicide would cause more harm than good. Physician-assisted suicide is fundamentally incompatible with the physician’s role as healer, would be difficult or impossible to control, and would pose serious societal risks.”

Advocates say that physician-assisted suicide is compatible with modern medical ethics and should be more accessible. Peg Sandeen, executive director of the Death with Dignity National Center in Oregon, told LMM that the attention focused on Maynard’s decision reflects increasing support among Americans for “Death with Dignity” laws.

“I am saddened by the tragedy of this young woman’s death, but I am thankful the state of Oregon offered her options at the end of her life,” she said. “When you have a compelling story, when you show a young family with a member dying, suddenly an issue that has broad support becomes something that everyone is engaged in.”

According to a 2013 study published in the New England Journal of Medicine, Washington physicians are becoming more comfortable with the state’s law.

“Our ‘Death with Dignity’ program has been well accepted by patients, families, and staff. We attribute this to the professionalism of our advocates, the great care taken by our prescribing and consulting clinicians when interacting with patients and families, the low profile of the ‘Death with Dignity’ program overall, and the willingness of the Seattle Cancer Care Alliance leadership to allow considerable debate before the program was developed,” researchers led by Dr. Elizabeth Loggers write. “A few clinicians who were initially strongly opposed to the ‘Death with Dignity’ program subsequently expressed their willingness to participate as consulting or prescribing clinicians, which further supports acceptance of the program.”

The AMA recommends hospice care for those seriously ill and nearing the end of life – care designed to comfort, not cure or hasten death – and multidisciplinary interventions such as pastoral support and family counseling. “Patients near the end of life must continue to receive emotional support, comfort care, adequate pain control, respect for patient autonomy, and good communication,” the statement read.

Dr. Daniel Sulmasy, associate director of the University of Chicago’s MacLean Center for Clinical Medical Ethics, echoed the AMA’s concerns during a recent Intelligence Squared debate in New York that was broadcast nationally on public radio.

“We strongly support the right of patients to refuse treatments and believe physicians have a duty to treat pain and other symptoms even to the point of hastening death,” Sulmasy said. “But empowering physicians to assist patients with suicide is quite another matter. Striking at the heart not just of medical ethics, but of ethics itself, because the very idea of interpersonal ethics depends upon our mutual recognition of each other’s equal independent worth, the value that we have simply because we are fellow human beings.”

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POLST Pioneer Susan Tolle: How Care Preferences May Become “For Tonight”

Dr. Susan Tolle. Cpu

Dr. Susan Tolle via

For many seriously ill and aged Americans, advance health care directives alone will not be enough to ensure their end of life care preferences are honored in case of  emergency or incapacity, said Oregon Health and Science University medicine professor Dr. Susan Tolle during a lecture Wednesday at the University of Chicago MacLean Center for Clinical Medical Ethics.

Tolle, the director of the OHSU Center for Ethics in Health Care, began developing and disseminating the Physicians Orders For Life-Sustaining Treatment (POLST) program in 1991. POLST is a medical order that allows the terminally ill to make clear what medical treatments they desire and wish to avoid; they may indicate preferences regarding resuscitation, intubation, intravenous antibiotics and feeding tubes. They may also indicate the location where they prefer to receive care.

POLST, first adopted in Oregon, is far more detailed than conventional living wills or advance directives. The form must be signed by a medical practitioner to be valid.

Tolle’s hope is that patients in their last year of life will carry a copy with them to guide emergency medical services to provide or withhold specific treatments. Ideally, a POLST form will be completed only after meaningful conversation among the patient, doctor and family.

“There has been general agreement for at least 20 years that people have a right to make decisions about the treatments they want at the end of life,” Tolle said, emphasizing that traditional advance directives are still valuable in lifting emotional burdens from family members deciding among end of life treatments for loved ones.

“It is emotionally less demanding for family members who stand by what they’ve been told to do,” Tolle added. “Advance directives also allow you to appoint a surrogate. They do some really important things.”

However, Tolle argued that advance care plans are more “philosophical and for the future.” As seriously ill individuals approach death, she said those plans should become “for tonight” in the form of a medical order.

MACLEANIncreased rates of advance directive completion have had little effect on the location of death; while only 10 percent of elderly Americans say they wish to die in a hospital, more than 40 percent do.

Tolle led a recent study of death records from 58,000 people who died of natural causes in 2010 and 2011 and determined some 30 percent had copies of their POLST form in a state-wide registry. Researchers compared the location of death on death records to POLST patient preferences, Reuters Health reports.

POLST includes three order sets that could impact the location of medical care. More than two-thirds of patients with POLST forms had chosen the first option: “prefers no transfer to hospital for life-sustaining treatments . . . transfer if comfort needs cannot be met in current location.”

In 2013, Illinois modified the Department of Public Health Uniform DNR Advance Directive to closer resemble the National POLST Paradigm standard. More than a dozen other U.S. states have similar programs.

Dr. Susan Tolle will receive the 2014 MacLean Center Prize in Clinical Ethics, an award of $50,000, during the Dorothy MacLean Fellows Conference on ethics in medicine. The conference will be held at the University of Chicago Law School on Friday and Saturday, Nov. 14th and 15th. The MacLean Center Prize is the largest award in the field of clinical medical ethics.

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