Consider The Conversation 2: Physicians Warn Against Futile Care At End Of Life
Posted on Monday, October 6th, 2014 at 9:17 am by lifemediamatters
Consider the Conversation 2: Stories about Cure, Relief and Comfort warns doctors, patients and families of the physical and emotional harm caused by aggressive, often unnecessary, end of life treatments. The documentary, produced by Michael Bernhagen and Terry Kaldhusdal, offers inspiring stories from seriously ill patients and practical advice from medical experts.
The failure of many doctors to compassionately explain difficult news causes many patients to continue harsh cancer therapies and miss opportunities for earlier hospice or palliative medicine– designed to comfort the terminally ill in the last months of life. Instead, many Americans die in intensive care units or bleed to death from surgery or other complications, often away from family.
“It’s all about how you approach the patient,” said Dr. Diane Meier, director of the Center to Advance Palliative Care. “If doctors can’t bear to tell the truth,” she adds, “patients and families may never get the opportunity to say goodbye to each other.”
In the film, Meier uses the Sept. 11 attacks as an extreme example of what most patients want at the end of life: time to say “I love you.” Several individuals aboard hijacked planes left heartfelt messages for their families on answering machines in their final moments.
Laura Schuman, diagnosed with metastic lung cancer, said doctors gave her the amount of information she believes she could handle, a benefit allowing her to plan for her own death while remaining hopeful.
“I know that I need to be prepared,” said Schuman, a 52-year-old mother. “I’m planning on living,” she tells her family, “but we do need to keep this in mind.” She stores her valuables and family trinkets in clearly marked plastic storage bins, some with a handwritten note on top explaining the significance of the contents.
But not all patients are as fortunate.
Dr. Anthony Galanos, medical director of inpatient palliative care at Duke University Medical Center, said patients without advance health care directives are often pushed by family to continue artificial nutrition or opt for risky procedures.
“Don’t take away the machines,” was one family’s request that their terminally ill father be kept alive by all means possible. “But he wouldn’t have wanted any of this,” the mother replies.Internal family conflicts are also more likely to occur in the absence of effective doctor-patient communication.
Dr. James A. Tulsky, chief of Duke Palliative Care, urges doctors to value “shared decision-making” instead of acting impartially. Shared decision-making occurs when a doctor explains treatment options, facts and statistics to the patient, and then listens for the patient’s concerns and wishes. “Then I can make my recommendation,” Tulsky said. “That is the ideal.”
Bernhagen and Kaldhusdal struggled to raise funding for the film, which at times makes heavy use of stock footage, old photographs and family videos; a few scenes have poor audio.
At its best moments, the regional Emmy-nominated documentary transcends its minimal production, encouraging open discussion of death. Their first film, A Documentary on a Taboo Subject, released in 2011, focused on the spiritual and physical struggles faced by the seriously ill.
“Death is a subject that’s still taboo, but people want to talk about it,” Kaldhusdal told Life Matters Media. “This film is about doctors, but you can’t talk about doctors and not talk about patients. This film is for all of us.”
The director’s cut was screened at the Oconomowoc Wisconsin Arts Center on Oct. 4.
Special Senate Committee Talks Advance Care Planning
Posted on Friday, May 23rd, 2014 at 9:27 am by lifemediamatters
During a roundtable meeting hosted by the U.S. Senate Special Committee on Aging, industry leaders called for an increased role among care providers to help more Americans complete their advance health care directives.
An advance directive may take many forms, such as a living will or power of attorney for health care. They help ensure one’s end of life wishes are carried out in the event a patient is unable to communicate. However, the vast majority of Americans have not planned for the end of life, according to recent findings published in The American Journal of Preventative Medicine.
“For frail elders, advance care planning for care preferences is particularly important and ensures that families, the physician, and other health care team members understand and act in accordance with a person’s wishes when it comes to the type of care that he or she would like to receive,” offered moderator Jennie Chin Hansen, C.E.O. of the American Geriatrics Society. “National and state policies should encourage patients and those who care for them to engage in advance care planning discussions.”
Paul D. Malley, president of advocacy group Aging with Dignity, said he urges both haste and caution as more providers help their patients plan in light of the Affordable Care Act.
“We must act with haste, because American families can’t wait. They need help navigating the system and navigating the expression of their wishes,” he said. “Caution, because I think as the best health care systems are working to improve care at end of life, there may be a focus on systems and processes that don’t make room for the individual preferences.”
Although the shift towards electronic medical records may help some physicians and care providers better learn their patients’ wishes, Malley said he believes there is still no replacement for the role of loved ones in end of life decision-making. “It is important to understand our roles, and our respective biases,” he said. Aging with Dignity distributes the popular Five Wishes collection.
Daniel O’Brien, senior vice president of Ethics, Discernment and Church Relations with Ascension Health, offered a Roman Catholic perspective.
O’Brien said he believes comfort and care for the dying should be a primary goal of health care. “Palliative care, in particular, is one specific approach to care for patients with serious illness that we must support and grow, because it focuses on caring for the patient as person, regardless of diagnosis,” he said. “It focuses on identifying and addressing the goals of care that are meaningful to them.”
Ascension, the nation’s largest Catholic health system, has been working with the Florida Conference of Bishops’ Committee for End of Life Care on a POLST (Physicians Orders for Life Sustaining Treatment) form modified to address concerns under Church teachings.
“Bishops in some states have opposed POLST legislation outright, mostly due to specific problematic features of the POLST paradigms in those states,” O’Brien said. “After making recommendations to add a few additional protections to the form, the majority of the committee recommended to the Bishops’ Conference that we allow piloting of our edited POLST in our Catholic hospitals.”
POLST forms are medical orders, and are more detailed than conventional living wills or advance directives. They allow patients to indicate preferences regarding resuscitation, intubation, intravenous antibiotics and feeding tubes. The forms are intended for patients in their last year of life, and they can follow patients across care settings. More than a dozen states have officially endorsed versions of the POLST form.
The Senate Special Committee on Aging was first established in 1961 as a temporary committee, but was granted permanent status in 1977. Although the committee has no legislative authority, it studies issues and investigates reports of health fraud and abuse. Sen. Susan Collins, D-Maine, is a ranking member.
Resuscitation Efforts Death Ritual In Western Medicine
Posted on Wednesday, May 29th, 2013 at 11:19 am by Life Matters Media
Although palliative care and hospice service have improved the death experience for many Americans, demands for non-beneficial resuscitation efforts are still frequent, said neonatologist Kelly Stuart at the Second Annual Conference on Religion and Medicine in Chicago Tuesday.
Medicalizing the death experience promotes dualism, Stuart said, separating both body and soul and death ritual and medicine. She said dualism does not attend to the needs of the whole person.
Dualism is more common in the Protestant traditions, because Protestants are largely without rituals. The rituals have been lost since the Reformation and the growth of organized medicine. Rituals become funeral services, usually without prayers for the dead.
“Race has been a disparity in the marketplace, so being black is a negative indicator for advance directives,” Stuart said. Due to a long history of receiving less care than whites, many blacks opt for more aggressive treatments at the end of life.
Blacks are almost twice as likely than others to choose aggressive end of life treatments and decline do-not-resuscitate orders, according to a recent study by the American Journal of Critical Care.
“Predominately Protestant, there is also comfort in redemptive suffering for the black community,” Stuart said. Thus, many insist everything medically possible be done at the end of life- giving them they care they wanted all along. Resuscitation becomes a sort of death ritual for blacks and other Protestants, almost a Christ-like experience.
The adult children of terminally ill patients often spend months fighting with insurance companies and hospitals for their parents’ medical treatment. Once treatment begins, it can feel like giving up to elect hospice or palliative care.
Only 7.5 percent of hospice patients are black- that is less than half of their population representation in the United States, The Washington Post’s Rob Stein reported in a 2007 article.
Stuart urged reform, because aggressive treatments can lead to more painful deaths. “The American death experience lacks positive ritual, and non-beneficial resuscitation has substituted for death ritual,” she said. The medical community participates in the distortion. She urged families to remove the conversation about the subject from hospitals, and instead speak of it within the context of a family’s faith.
Stuart said she finds it helpful to speak with chaplains about suggestions for non-beneficial resuscitation. “One woman told me I wanted her son to die because he was black, it really offended me. It took me a long time to get over, but you have to come with open hands and build trust,” Stuart said.
POLST Form Presented At Northwestern Memorial
Posted on Thursday, May 2nd, 2013 at 3:12 pm by Life Matters Media
“The Illinois POLST form is a step in the right direction,” said Mary F. Mulcahy, a co-founder of Life Matters Media and practicing oncologist at Northwestern University, while lecturing physicians about the form Thursday at Northwestern Memorial Hospital.
In March, the Illinois POLST form was released to the public, an effort headed by the POLST Paradigm and the Chicago End-of-Life Care Coalition. This update to the Illinois DNR advance directive aims to improve the quality of life for patients at end of life.
POLSTs, Physicians Orders for Life Sustaining Treatment, are more detailed than conventional living wills and advance directives. These forms give patients the freedom to indicate preferences regarding resuscitation, intubation, intravenous antibiotics and feeding tubes. Such forms are intended for patients in their last year of life, and they can follow patients across state care settings and direct doctors to provide or withhold lifesaving treatments.
The form should be adjusted over time to fit each patient’s prognosis. “This is not a one-time thing, as patients progress the form can change,” Mulcahy said. “There should be shared decision-making between physicians and patients.” To be valid, the form must be signed by the attending physician.
In the U.S., the average patient visits the hospital more than 30 times and meets nine different physicians during the last six months of life. These patients could benefit from having their medical wishes written down and on hand; the convenience helps cut through the chaos and confusion prevalent in care settings.
POLST was developed in Oregon in the 1990s, and now 14 states have POLST programs. Twenty-eight states are considering the use of such forms.
“Hopefully this form will change the culture and get people talking and preparing for the end of life,” Mulcahy said.
Palliative care expert Andrew Thurston, M.D., agreed. “I think this is great. My hope for the POLST form is that it will clarify patients’ wishes for their end of life care, and that it helps doctors more effectively communicate with their patients,” said Thurston. “We need more open discussion, and with easier language, this form helps.”
Death Denying Culture Unfortunate Result Of Medical Innovation
Posted on Wednesday, April 17th, 2013 at 9:51 am by Life Matters Media
Advances in medical therapies and technological innovation have led to a “death denying” culture pervading American health care, said Dr. Susie White, an emergency medicine physician at Provena St. Joseph Hospital, during a bioethics symposium at the University of Illinois-Chicago on National Health Care Decisions Day.
National Health Care Decisions Day aims to inspire and educate the public and medical providers about the importance of advance care planning.
“Many older patients find themselves in a position they never thought they would find themselves in,” White said. “We have gained 30 years in our life expectancy.” Prior to antibiotics and modern therapies, most people died quickly- from infections, malnutrition or fevers.
Now, only 10 percent of Americans die sudden, unexpected deaths, and the sick and dying receive care in hospitals.
These shifts have fueled a “death denying” culture, one in which many wish to suppress or avoid any sign of aging or illness, White said. Families may grow angry at doctors- or even the patient- when treatments fail.
White maintains that palliative care can help patients and their families, and that the relatively recent medical specialty has the potential to reverse this culture of denial. “What we want to do is form a team of doctors, nurses, chaplains, anyone who might be helpful in an individual’s case and help anyone who has a life- limiting disease,” she said. “We want everyone in the family on the same page and smooth transitions.”
Most patients should not begin palliative care during the process of active dying, but rather, much earlier- even at the onset of illness, White said. “Palliative care is not hospice, but is an extra layer of support, that can go along with aggressive treatments,” she said.
The Integritas Institute for Ethics, a program of the John Paul II Newman Center, arranged the symposium, which explored the ethical challenges that arise at the end of life.
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