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.
Palliative medicine for the seriously ill should be covered by all payers and provided by all health organizations, said Dr. Diane Meier, director of the Center to Advance Palliative Care, during a presentation exploring new findings about dying in America.
Meier addressed a widely circulated report from the Institute of Medicine (IOM) calling for new public engagement strategies to foster informed decision-making. According to Dying in America, not only do most Americans lack basic understanding about end of life care choices, but community leaders “have not fully utilized strategies to make that knowledge available, meaningful and relevant across diverse population groups.”
Meier, a member of the IOM, helped develop the institute’s five key reccomendations: more person-centered, family-oriented palliative care; better doctor-patient communication and advance care planning; professional education and development; better policies and payment systems; and more public education and engagement.
The report cited the present as the best time to help normalize conversations about death and dying, partly because millions of aging baby boomers will require such conversations in the near-future. It also pointed to the social trends of health consumers’ willingness to pursue high-quality care, a growing urge to share stories about end of life care experience that resonate across diverse populations and engaged leadership within local communities.
“When the IOM says that something should be done, there is enormous imprimatur, legitimacy and influence on the zeitgeist about what’s acceptable to talk about,” Meier said. The IOM acts under the National Academy of Sciences through its congressional charter as advisor to the federal government. It is nonpartisan and funded by a network of donors, endowments and contracts.
Meier acknowledged the difficult nature of changing federal policies and payment systems involving end of life care, partly because of political polarization surrounding the Affordable Care Act– the health reform law signed by President Obama in 2010 and recently upheld by the Supreme Court.
Thirty percent of likely voters when polled said the law allows government “death panels” to make decisions about patients’ end of life care, a theory discredited by most medical professionals.
“We have a real challenge to improving accurate information and understanding on the part of the public about what palliative care is about and what it’s not,” she added. Palliative medicine is usually provided only to the terminally ill to help treat symptoms and side-effects of disease and aggressive treatments. The goal is not cure.
Meier mentioned a handful of national campaigns helping familiarize Americans with the benefits of comfort care and advance care planning, including a major effort from the American Cancer Society’s Cancer Action Network.
“We are working with disease-specific organizations. When a patient googles lung cancer, two things come up: the Wikipedia page and the American Cancer Society or other disease-specific organization,” Meier offered. “Through our partnership, we have developed a series of ads talking about palliative care that sees the patient beyond cancer treatments.”
Part of the cancer network’s “Quality of Life” campaign includes advertisements in magazines. One depicts a female cancer patient looking upward with the word “chemotherapy” written below. The “che” and “apy” are crossed out in purple, highlighting the word “mother.”
Caitlin Doughty, acclaimed author of Smoke Gets In Your Eyes: and Other Lessons from the Crematory, wants to encourage more open discussion on a taboo subject: death and decay. In 2011, Doughty founded The Order of the Good Death, a group of funeral industry professionals, academics and artists exploring ways to better familiarize America’s “death phobic” society with mortality and its meaning.
Doughty, a trained mortician, spoke with Life Matters Media about her memoir, burial wishes and experiences working in a crematory.
What inspired you to write Smoke Gets In Your Eyes?
I worked in a crematory, and it was so fascinating, the things that I saw and the things that other people didn’t see, because of the way that death works right now in America. It’s a hidden culture and a culture of silence– how we deal with death. My policy is always that we’re better when we know what’s going on, when we know the facts.
What goes on behind the scenes in a crematory?
A lot of crematories now are somewhat industrial environments, because things get centralized. There’s a single point that all the bodies will go to, whether it’s a centralized embalming facility or centralized cremation facility.
It’s completely fascinating. It’s one of the most fascinating places that you can go to, especially in a world where we don’t see a lot of death. It’s new everyday. Each body is different, each case is different, each family is different.
There’s a lot of care for the body where I worked, and I certainly tried to do that. But that doesn’t mean that there’s not a high volume. If you are concerned about it, ask to see the facility, ask for a witness cremation.
Are cremations considered completely natural and ‘green’?
No. The only really natural way to care for a body is just to put it straight into the ground. Dig a whole with a shovel and put the body right on in with a shroud. But cremation does use a lot of natural gas and releases mercury into the environment. The mercury comes from dental fillings.
Are ‘green’ burials becoming more common?
They absolutely are. I think it’s both environmental and a sense of “why am I cutting myself off from the earth? Why am I putting myself in a casket and then in a steel vault?” It’s also a cost issue.
How do you wish to be buried?
I would like to be naturally buried. Eventually, I would love to be left out for animals, but that’s not legal right now. I already have my cemetery picked out in Marin in California. Straight in the ground, please.
Why do you wish to be eaten by wild animals?
I think that metaphorically, it works very well for me. The idea of going back into the life cycle in a very basic way. Have it be fair play. I eat animals now, and I think that they should get to eat me, because I am an animal, too.
Why do you believe end of life discussions are taboo?
At a certain point in the early 20th century, both dying, the process of dying, and death itself, the dead body, got taken out of the home and given to professionals. Since that time, the cultural inheritance that we have is “don’t talk about death. It’s for the professionals, not for you.
Are you surprised by the positive reactions to your book?
The book has done pretty well, which shows that there is a market for it. People want to know about their death, they want to know the facts and be more comfortable with it.
As Catholics worldwide mark October as a month to “Respect Life,” one Paulist priest told congregations at Chicago’s Old St. Mary’s Church that November could be an appropriate time to “Respect Death.”
Fr. Robert Cary addressed end of life care during homilies at all weekend masses at the South Loop Church; he also hosted a follow-up discussion in the parish hall that will be repeated later this week.
“If we are brought into life by love and sustained in life by love, then we should leave this life in love and care,” Cary said. Though he served Old. St Mary’s from 2007 through 2010, he is visiting Chicago from his current Austin, Texas parish to address questions of human life, medicine and advance care planning. Cary completed graduate work at Loyola University-Chicago in bioethics and health policy.
Our tradition affirms what we so often already know in our minds and feel in our hearts. If a proposed treatment will have little benefit, it is okay to stop.
His sermon on the topic, seldom directly discussed in the Church, began with remembrances of voice messages left by those killed in the September 11th attacks. “There was hardly anyone calling to express anger or hatred or resentment,” Cary said. “Those messages remain a powerful reminder that in the darkest moments, even facing death, the human urge is to love.”
That urge, he said, is a reflection of the commandment expressed in the day’s Gospel reading: the call of Christ to “love your neighbor as yourself.” Such love should be expressed to family members throughout their lives and serious illnesses, and Cary asked parishioners to consider how best to do so when situations are dire.
“Our tradition affirms what we so often already know in our minds and feel in our hearts,” he said. “If a proposed treatment will have little benefit, it is okay to stop.”
However, stopping treatment does not equate to a cessation of care. Cary suggested core tasks for both the dying person and for family members.
Core tasks of family
- Providing physical comfort and presence
- Allowing the dying person to go on with simple pleasures
- Fostering hope and faith
- Facing own fears and feelings of helplessness
Core tasks of dying person
- Asking questions about the meaning of life
- Reconciling with family and with God
- Accepting physical limitations
- Respecting death in faith
“We, too, need guidance in respecting death,” Cary said; such guidance was the purpose of a following presentation about the interaction of the Catholic faith and medical realities.
Cary’s discussion aligned bioethical principles of autonomy, non-maleficence, beneficence and justice with what he labeled “Catholic values” that must be considered when making any end of life care decision: the respect of life, the preservation of life, the diverse and changing essence of human life, and human life’s social nature.
He called on participants to differentiate ordinary and extraordinary medical care, acknowledging that the labeling of specific treatments is difficult and technical. Instead, Catholics could check instincts, recognizing that what care is required is care that is morally ordinary. Such care “gives reasonable benefit to a person without excessive burdens,” Cary explained.
Providing morally ordinary care requires an acknowledgment of the finite nature of humanity, he said, and Catholics should know that it is okay to let a loved one go. “Allowing someone to die is not the same as intending death.”
Fr. Bob Cary will repeat his presentation, “Care at the End of Life,” on Tuesday, Oct. 28th at 9:15 a.m.
Fr. Bob Cary suggests the following resources for Catholics considering end of life care:
- Ethical and Religious Directives for Health Care Services
- Medical Care at the End of Life: A Catholic Perspective
- The End of Life Advisor: Personal, Legal and Medical Considerations for a Peaceful, Dignified Death
- Remember to Live: Embracing the Second Half of Life
- Passages in Caregiving: Turning Chaos into Confidence
Media Landscape Opens Opportunity For Earlier, Better End Of Life Care: ASCO’s Inaugural Palliative Care Symposium
The prevalence of end of life decisions in current media and literature provides an opening for physicians to prompt conversations about the subject with patients, said Dr. Anthony Back, a Seattle Cancer Care Alliance medical oncologist, in remarks to the Palliative Care Oncology Symposium in Boston. Before beginning such difficult dialogue, however, he offered frameworks to facilitate end of life conversations both early and later on in a patient’s disease trajectory.
The Symposium was the first such hosted by the American Society of Clinical Oncology to promote discussion and integration of palliative care- a medical specialty designed to address physical, emotional and psychological symptoms of disease. The meeting drew an international audience of medical, radiation and surgical oncologists along with nurses, social workers and physician assistants.
We have to role model the developmental pathway to wanting to do this, to learning to do this, to becoming a ninja.
“This is a window of opportunity to get in the public dialogue in a really public way,” Back said during a session addressing the skills required for optimum end of life care. Back pointed to The New York Times’ widely-circulated coverage of Joseph Andrey and his daughter’s struggle to honor his wish to die at home. Back also outlined social efforts underway nationwide as a result of a project that began in his home of Seattle, Death over Dinner, along the success of physician Atul Gawande’s new book, Being Mortal. Back helped launch Vital Talk, a nonprofit aiming to help foster better doctor-patient communication.
“This reflects the work done over the last 20 years that set the stage for this discussion,” Back said. “Being Mortal wouldn’t be on The New York Times’ best-seller list if not for the work you are doing.”
He emphasized, however, that work remains to help physicians charged with navigating patients through the complex medical decisions they may face as they approach the end of their lives. “The task for physicians is the question of ‘how do we get to telling patients that we will give them an extra layer of support to talking about the really tough stuff?’” Back said.
Communication, he warned, is a learned expertise that must include frank, explicit discussion about what may happen when curative treatment options are no longer available. “We have to role model the developmental pathway to wanting to do this, to learning to do this, to becoming a ninja,” Back said to laughter and applause.
Physicians miss opportunities to educate patients about what may be ahead in one of three ways, he said: 1) in thinking “bad stuff won’t be quite so bad” if you don’t talk about it, 2) by delaying discussion about “bad stuff until you absolutely have to,” or 3) in thinking that “cutting to the chase” will save time and decrease patient distress.
Those approaches are faulty, Back warned, and asked the audience to consider how they may move such conversations “upstream” in ways that will not “completely freak everyone out.”
For end of life dialogues occurring early on in a patient’s illness- the optimal time for such conversation- Back offered the framework P.A.U.S.E:
P.A.U.S.E. for early end of life dialogue
- Pause: As “time” is often cited by physicians as a barrier to facilitating what can be a lengthy and complex discussion, they should stop to consider that this conversation may be more important than one about further treatment options.
- Ask permission: Physicians should ask for permission to have this conversation and explain its importance. “Could we take a moment?” or “This will help me guide you,” are two conversation-starters that prove empowering to the patient.
- Suggest a surrogate: Patients who do wish to engage in advance care planning are often thwarted by confusion about proxy selection. Physicians should ask simply, “Who is the person who knows you the best?”
- Expect emotion: The many emotions that accompany such conversations often add to the time required to facilitate dialogue, further necessitating the need for physicians to “pause.” Doctors must empathize and realize the topic is a tough one for everyone in the room.
For end of life discussions taking place later in a patient’s disease course, Back offered the framework R.E.M.A.P:
R.E.M.A.P. for late end of life dialogue
- Reframe: Physicians are obligated to communicate that the “status quo” is no longer working. However, they often face tough follow ups: “There’s another chemotherapy after this one, right?” “I only want to talk about positive things,” or “I want to be aggressive.”
- Expect emotion: In response to these follow ups, there is even greater urgency to empathize with patients from the start
- Map: The conversation should turn to what a patient finds most important and to his or her goals. Physicians should explore patients’ interests, ask to see photographs and inquire about special family occasions or milestones.
- Align: Physicians should ask about a patient’s values and the beliefs guiding any particular goal.
- Plan: The final step for physicians taking part in late end of life dialogues is to match any particular treatment to a patient’s stated values.
Back acknowledged that the execution of a “P.A.U.S.E.” or “R.E.M.A.P.” conversation is often met with resistance. “Patients often say ‘it doesn’t feel like time to give up,”” Back said. “Assure them that ‘I’m not giving up on you.’”
Music helps calm and comfort seriously ill patients and grieving families facing the end of life, said thanatologist Tony Pederson at the Music-Thanatology Association’s International Conference.
Pederson, a trained harpist and vocalist with nearly two decades of music-thanatology experience, performed for nurses, physicians and end of life care advocates Friday at Midwest CareCenter in Glenview, Ill.
“Music thanatologists address pain and symptom management issues as people approach the end of life. We use music as a clinical tool to connect to things like breath, pulse, pain and tension,” Pederson told Life Matters Media. “It’s not about playing pretty music, it’s about connecting to the body.”
Music thanatologists are usually invited to perform for patients receiving hospice care or palliative medicine- care designed to comfort, not cure disease. The harp is typically the primary instrument played.
“It’s me, the music, the harp and the patient,” Pederson added. “I’ve also seen how beneficial this is to the family. People tend to be disconnected from the dying process, and because music provides the patient relief, it also helps the family calm down. Some are able to finally rest.”
Traditional thanatologists often avoid religious motifs or hymns in favor of moment-to-moment, almost improvised, melodies that mirror a patient’s emotions or environment.
“We’re not playing particular songs, it’s really changing moment-by-moment. But we are acutely conscious that we are caring for the whole person, spirituality included,” he offered.
Kieran Schnabel, a music thanatologist and palliative care specialist from Portland, Ore., often performs pop music for seriously ill children.
“There are so many benefits for patients: emotional, physical, spiritual, benefits to the family,” Schnabel told LMM. “Children near the end of life are different from adults. Many are still up and running around, so I end up playing interactive music for them.”
Popular songs include “Let It Go,” the Oscar-winning anthem from Disney’s animated musical Frozen, and “Shake It Off” by pop singer Taylor Swift.
“Pop and harp music does the same thing: changes the environment and helps people cope with what’s happening,” he added. “More people are recognizing the power of music and it’s ability to provide care.”
End of life expert Dr. Martha Twaddle, senior vice president for Medical Excellence and Innovation at Illinois-based Journeycare, said she believes music thanatology will become more common as the baby boomer population ages and more terminally ill patients opt for comfort care.
“Music helps patients, but it also affects hospital staff in a positive way,” Twaddle said. “It changes our agitation as we walk from agitated bedsides to the next room.”
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- Reuters Health: LMM Reports
- Voices in Bioethics: LMM Commentary
- Palliative Medical Teams Encouraged By Institute Of Medicine’s “Dying In America” Report
- Burial and Death: Author Caitlin Doughty, Smoke Gets In Your Eyes
- One Chicago Catholic Parish Receives End Of Life Education
- Media Landscape Opens Opportunity For Earlier, Better End Of Life Care: ASCO’s Inaugural Palliative Care Symposium
- Advance Care Planning Among Seniors Of A Diverse City
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Daniel Gaitan serves as a content producer...More