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.
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.
Increased 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.
Dr. Ellen Fox, former director of the National Center for Ethics in Health Care with the U.S. Department of Veterans Affairs (VA) health care system, has made public an advance care planning guide specially designed for veterans. The guide, Planning for Future Health Care Decisions, has been delayed for years by officials within the VA, Fox said.
Fox first announced its release in an article posted on bioethics.net, where she noted that five years have passed since the media firestorm surrounding “death panels”- a term coined by former Alaska governor Sarah Palin describing an Affordable Care Act provision that would have authorized Medicare payments for advance care planning discussions. “The long-term fallout from ‘death panels’ has been profound, and has extended far beyond issues of Medicare reimbursement,” she wrote.
Fox spoke with Life Matters Media about the importance of advance care planning and answered questions via email. Planning for Future, also known as Planning My Way, is now available as a downloadable PDF document.
How did you become interested in medical ethics and advance care planning?
At Harvard Medical School, I learned that patients have a right to accept or decline treatments- including life-sustaining treatments- and that physicians are obligated to respect patients’ decisions. However, as I soon discovered, it is rarely that simple. The unfortunate reality is, many patients never have an opportunity communicate their care preferences before they become critically ill or unable to speak for themselves.
Physicians often put off advance care planning discussions until a crisis occurs, or until the patient is close to death and can no longer make decisions. This is hard on everyone, and too often results in decisions that are not what the patient would have wanted.
I knew there had to be a better way. At Yale, I developed an ethics training program for residents that focused on communication skills. Then, I completed a post-graduate Ethics Fellowship program at the University of Chicago. Later, I became the Director of End-of-life Care at the American Medical Association and developed a curriculum called EPEC (Education in Palliative and End-of-life Care) to educate providers about end of life care. In 1999, I accepted the job as chief of health care ethics at the VA.
What was your vision for advance care planning at the VA?
My vision was that every patient who wants to discuss and document their health care preferences in advance will be able to do so. When I started, VA had no laws or regulations about advance care planning. The rest of the country at least had the Patient Self-Determination Act, which required providers to ask patients about advance directives. Every state had advance directive laws– but these laws did not apply to VA. So one thing we did was to publish a regulation that essentially mirrored the requirements outside of VA.
But we did not stop there. We established a policy requiring primary care providers to ask patients about advance care planning at regular intervals. We established a standardized advance directive form that enables patients to communicate their preference in ways that most state forms do not. We put in place a system that streamlines the process of entering advance directives into patients’ electronic records. We rolled out a training program for VA staff who provide patients with information and assistance on advance directives. But a key piece of the strategy was missing– an educational resource to help patients and families with advance care planning. That resource was Planning My Way.
You recently wrote an article for bioethics.net in which you made Planning My Way available to the public for the first time. What was your goal?
My goal is simple – to get Planning My Way into the hands of the people it was designed to help.
Planning My Way was developed to help people plan for future health decisions. A lot of time, energy, thought and taxpayer dollars went into developing Planning My Way to ensure that it was done well. The result is a high-quality resource that I believe will improve people’s lives. The public paid for the development of Planning My Way, and they have a right to it. It is wrong to produce this resource with taxpayer dollars and withhold it from the public.
I was not in the room when decisions were made about the release of Planning My Way. But it was my understanding all along that it was never a matter of “if” but “when.” The intent was to time the release so as to minimize the risk of rekindling the “death panels” debate. But that time never came.
Has it been frustrating having to counter the “death panel” controversy?
Yes, to say the least! That controversy made advance care planning a political issue.
It played on people’s fears of death and dying by suggesting that the purpose of advance care planning is to encourage people to forgo life-sustaining treatments. In fact, the opposite is true. The whole point of advance can planning is to help patients think about and communicate their own personal health care preferences, regardless of what those preferences may be. The point is to respect how each individual wants to be cared for including what treatments they want to receive.
How long has it been since Planning My Way was completed?
Planning My Way has been ready for release for a long time– years. The PDF version was completed first, followed by the online version. I can’t give you exact dates, but in the spring of 2013, I presented Planning My Way at a public meeting. I showed the group both the PDF version, which had been produced as a bound workbook, and an interactive online version, which was live on the Internet. Both versions were completed long before I made that presentation.
You posted a PDF version on Google Drive. What about the interactive online version? Has that been released?
Not yet, in the sense that if you search for Planning My Way, you will not find it on any VA web site. That’s because VA has still not released any version of Planning My Way to the public. But I have now released the online version myself by posting the link to a hidden web site– a site that VA did not want the public to know about. As of this morning, the hidden site was still not linked to any public web pages, which prevents Internet search engines from finding it. The address of that hidden site is www.ethics.va.gov/pmw_web.
Do you expect that VA will release Planning My Way to the public any time soon?
I certainly hope so. I am hoping that my decision to go public will motivate VA to officially release this resource and make it widely available both inside and outside of VA. My sources inside VA tell me that I have gotten their attention, and that serious discussions are now under way.
I will breathe a sigh of relief when VA finally releases Planning My Way, and I’m hoping that will happen very soon. But I am done waiting for VA to act. My plan is to continue sharing the document unofficially, through various channels, including through direct contact with VA providers, veterans service organizations, advance care planning advocates and other communities that are deeply committed to patients and their right to receive the type of care they want and need.
How is it different from other advance care planning products?
There are a number of different resources out there to help people with advance care planning. Each has its strengths and weaknesses.
One thing that makes Planning My Way different is how we went to great lengths to ensure that its content was unbiased and helpful to everyone, regardless of their background or viewpoint. We consulted extensively with experts in health communications and many other fields, as well as representatives of veterans organizations, faith groups and disability rights communities. I think it’s safe to say that there is no other advance care planning resource that has been as extensively vetted as Planning My Way.
Can any individual benefit from Planning My Way? Or is it designed primarily for veterans?
It was designed for everyone– veterans and non-veterans alike. So anyone can benefit from Planning My Way. At the same time it was designed with Veterans in mind. So some of the images and case examples will have special meaning for Veterans and their families.
The young woman who moved to Oregon to take advantage of the state’s controversial physician-assisted suicide law ingested a lethal dose of doctor-prescribed barbiturates Sunday, sparking national debate on so-called “death with dignity” legislation.
Brittany Maynard, 29, was diagnosed with an aggressive glioblastoma brain tumor in January and was later given six months to live. Maynard and her husband, Dan Diaz, moved from California because that state does not allow terminally ill adults to end their lives with doctor-prescribed drugs.
“She died as she intended– peacefully in her bedroom, in the arms of her loved ones,” Sean Crowley, a spokesman for advocacy group Compassion & Choices, told The Associated Press. Maynard suffered increasingly frequent and longer seizures, severe head and neck pain, and other stroke-like symptoms, he said.
Working with Compassion & Choices, Maynard used her story to raise awareness about physician-assisted suicide and inspire other terminally ill Americans to end their lives on such terms.
“I don’t wake up every day and look at it, I know it’s in a safe spot,” Maynard said in a Compassion & Choices-produced video about her life-ending drugs. That video has been viewed more than 10 million times on YouTube. “I will pass peacefully with some music I like in the background.”
Gwen Fitzgerald, director of communications with Compassion & Choices, told Life Matters Media she believes younger people can identify with Maynard and learn from her decision.
“The attention has been incredible, very heartwarming that people have listened to what she had to say. People are trying to have a more open mind about her decision,” Fitzgerald said. “We tend to think about people who are dying as older. Obviously, a 29-year-old is a bit more a-typical, thank goodness, but her message is resonating with a broad range of audiences.”
Physician-assisted suicide is legal in four other states: Washington, Vermont, Montana and New Mexico. More than 750 people in Oregon have used the law to die.
Both the Oregon Death with Dignity Act (1994) and the Washington statute (2008) set safeguards to protect patients against coercion from physicians or from family members. Each patient must be of sound mind when requesting the prescription and be informed of palliative and hospice care options. Two doctors must confirm a diagnosis of terminal illness with no more than six months of life-expectancy.
Maynard’s decision and influence upset some religious and disability rights groups.
“We are saddened by the fact that this young woman gave up hope, and now our concern is for other people with terminal illnesses who may contemplate following her example,” Janet Morana, executive director of Priests for Life, said in a statement to the AP. “Brittany’s death was not a victory for a political cause. It was a tragedy, hastened by despair and aided by the culture of death invading our country.”
Dr. Ira Byock, a palliative care physician, said he believed Maynard was being “exploited” by Compassion & Choices and that palliative medicine could have aided in alleviating her suffering.
“Compassion & Choices actually sold to the public the legalization of physician-assisted suicide because of unremitting pain. But we can control pain,” he said on PBS Newshour. “What’s happening now is that over 85 percent of people who use Oregon’s law and end their life do so because of existential or emotional suffering, feeling of being a burden to their families, feeling the loss of the ability to enjoy life, feeling the loss of meaning.”
Byock, author of The Best Care Possible, said Maynard could have received “excellent whole person care and be assured of dying gently in her bed surrounded by her family.” Palliative medicine is provided to the terminally and seriously ill to help treat symptoms and side-effects of disease. The goal of palliative care is not cure.
But Craig Klugman, chair of DePaul University’s Department of Health Sciences and a bioethicist, told LMM many terminally ill patients wish to have control over their final days and die only when they feel ready.
“As the Oregon experience has shown, for many patients, assisted suicide is about having a feeling of control– since a large percent of individuals who receive a prescription for their death do not take it,” he said. “The decision is a very personal one that needs to take into account not just the patient but also their family. That this was, controversially, the right decision for Mrs. Maynard does not mean it is the right decision for anyone else.”
Klugman said the assumption of many medical professionals that palliative care and other comfort treatments negate the need for “death with dignity” laws is based in belief that suicide is immoral.
“Sudden, unplanned suicide by healthy people is tragic and leaves survivors with questions and often guilt that they could have or should have done more. But that is not the case here,” he added. “For Mrs. Maynard, even though palliative care could help with her acute symptoms, it could not assist with her existential ones— watching her lose control over her body and mind, the loss of what she felt was her dignity as others had to take on more and more of her daily activities of living, and living with the knowledge that for her, this diminishment was not a life she wanted to experience.”
Peg Sandeen, executive director of the Death with Dignity National Center in Oregon, told LMM the national attention on Maynard’s decision reflects increasing support among Americans for “death with dignity” legislation.
“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 talk to average Americans, between 60 to 70 percent of people say ‘yes,’ ‘death with dignity’ should be legal. 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.”
The health fraud trial date involving Lisle, Illinois-based Passages Hospice has been set for July 6, 2015, an official with the Department of Justice told Life Matters Media.
Seth Gillman, 45, a partial owner who founded the company in 2005, was first charged in January with health care fraud and conspiracy to defraud the government. According to prosecutors, Passages knowingly over-billed the government by millions of dollars for unnecessary hospice care for seniors.
In May, fraud charges were brought against Gwen Hilsabeck, who served as a co-administrator; Carmen Velez, who served as director of clinical services and director of nurses for the Chicago region; and Angela Armenta, who served as director of certified nursing assistants for the Chicago region.
The four defendants, all released on bond, appeared before U.S. Judge Thomas M. Durkin in June and pleaded not guilty. Passages, a corporation, has also pleaded not guilty.
According to prosecutors, Gillman, Hilsabeck, Velez and Armenta participated in an elaborate scheme “to cause Passages Hospice LLC to submit false claims to Medicare and Medicaid for medically unnecessary hospice care, namely, hospice care for patients who were not terminally ill and hospice care that did not qualify for general inpatient care.”
Between August 2008 and January 2012, Medicare paid the for-profit hospice company more than $90 million for hospice services, including more than $20 million for general inpatient services. From 2006 to late 2011, Passages submitted claims for about 4,700 patients to Medicare and Medicaid.
Gillman, Hilsabeck, and Passages allegedly paid bonuses to nursing directors and certified nursing assistant directors employed at the company in order to increase the number of patients receiving general inpatient care. In 2012, Medicare’s daily reimbursement for general inpatient care was $671.84; the daily payment for routine care was much lower, $151.23.
One former employee told LMM she quit after realizing that something felt wrong.
“I left the company a few months before the indictment, after I couldn’t ignore my gut,” she said, asking not to be named as she continues to work in a similar industry. “I was in the dark about the fraud, but I knew deep down I couldn’t be a part of that company anymore. I was appalled to find out how many people were involved in the deceit. I was lucky enough to leave on my own for another job, but my coworkers and friends weren’t. They’re still fighting for pay, vacation time and 401K contributions owed to them.”
In February, Passages closed in light of the allegations. The hospice operated in four states, yet the majority of services were provided to Illinois seniors. Earlier that month, employees told LMM that they vowed to continue operating for patients’ sake.
According to the FBI, federal agents have interviewed patients, family members and more than 30 former and current Passages employees. Several reported the allegedly fraudulent billing and marketing practices to Medicare and law enforcement.
Hospice is generally care provided in a patient’s home, but it can also be provided in a center, hospital, nursing home or other long-term care facility for people facing illness near the end of life. The number of hospice patients served has risen more than 25 percent during the last five years from 1.25 million in 2008, according to figures published by the National Hospice and Palliative Care Organization.
Passages did not operate an inpatient facility, instead deploying nurses to visit hospice patients in nursing homes and private residences. The next status hearing is set for Dec. 8.
We think there are a lot of well-intentioned people here. Most of them have the best of intentions, but they refuse to stop and think about the implications of the policies they are pursuing.
Hundreds of patients, ethicists and medical providers attended the World Federation Conference in downtown Chicago to voice support for physician-assisted suicide, also known as “death with dignity.” The conference, made up of 49 right-to-die organizations from around the world, also drew numerous protestors from religious and disability rights groups.
Hosted by the non-profit Final Exit Network, the event aimed to encourage grassroots organization to support “death with dignity” laws and change attitudes.
“We believe that legislation does not go far enough. We believe that it is the right of every competent adult, suffering from severe, intractable illnesses which have deprived them of quality of life, to choose to hasten their death,” said Janis Landis, vice president of Final Exit Network, in a statement to Life Matters Media.
They would dictate to me how much pain and suffering I have to endure at the end of my life. They want to limit my right to choose.
Proponents of “death with dignity” legislation say such laws increase patient freedom 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 may self-administer a prescribed lethal dose of barbiturates.
But some disability advocates, medical providers and religious organizations argue physician- assisted suicide is unnecessary and endangers the most vulnerable patients. The American Medical Association, the nation’s largest organization of doctors and medical students, does not support it.
Adam Vallard, a member of Not Dead Yet – a national disability rights group opposing all forms of aid in dying legislation – said he worries doctors could pressure disabled patients to end their lives early.
“There is this movement of right-to-die advocates who are not making distinctions between allowing someone to die with dignity and steering someone to assisted suicide. We see this as a larger trend in our society to devalue lives that are costly,” Vallard said. “We think there are a lot of well-intentioned people here. Most of them have the best of intentions, but they refuse to stop and think about the implications of the policies they are pursuing.”
Other protestors held signs, wore skeleton masks and chanted. Some conference attendees said they were told to avoid them. Many reported being instructed to avoid conversation out of fear of inciting violence.
Ken Leonard, a board member of the Hemlock Society of Illinois, called the protestors “religious extremists” and misinformed.
“Most of them are there because they believe it is God telling them to do so,” Leonard said. “They would dictate to me how much pain and suffering I have to endure at the end of my life. They want to limit my right to choose.”
Kathryn Tucker, executive director of the Disability Rights Legal Center and former legal counsel to Compassion & Choices, one of the nation’s leading advocacy groups for the legalization of physician-assisted suicide, said she works to ensure disabled Americans receive the care they want at the end of life.
“Dying these days has become a long, arduous journey,” Tucker said in her presentation. “Choices will expand, aid in dying will become increasingly available, we will see more clinical practice guidelines and more evidence that the process is becoming normalized.”
Physician-assisted suicide is legal in five states: Oregon, Washington, Vermont, Montana and Hawaii.
- Advance Care Planning
- Hospice and Palliative Care
- Life Choices
- Politics and Law
- Society and Culture
- Treatments and Illness
- Health Care
- Reuters Health: LMM Reports
- Voices in Bioethics: LMM Commentary
- Chicago Initiative Helps Improve Palliative Care, Increase Providers
- Debunking Palliative Care Myths
- Islam And Medicine: Differing Views On Brain Death
- Intelligence Squared Debate: Legalize Assisted Suicide?
- POLST Pioneer Susan Tolle: How Care Preferences May Become “For Tonight”
- May 2014
- January 2014
- December 2013
- November 2013
- October 2013
- September 2013
- June 2013
- May 2013
- April 2013
- March 2013
- February 2013
- January 2013
- December 2012
- November 2012
- October 2012
- September 2012
- August 2012
Subscribe via Email
Enter your email address to subscribe to this blog and receive notifications of new posts by email.
Daniel Gaitan serves as a content producer...More