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A BI-WEEKLY PUBLICATION FROM THE CEDARS-SINAI CHIEF OF STAFF June 6, 2014 | Archived Issues

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Shattering the Taboo Against Discussing Death

Panelists at the conference pointed out that the failure to do advance care planning and have conversations about end-of-life care before a health crisis leads to costly medical treatments that may involve greater burdens than benefits for patients.

Southern California Healthcare Providers Come Together at Cedars-Sinai to Launch Joint Effort to Improve End-of-Life Care

If there is such a thing as a "good death," it's more likely to happen in the Los Angeles region in the near future, now that nearly a dozen major healthcare providers have joined forces to promote more compassionate end-of-life care.

This was the consensus among healthcare and religious leaders who spoke during a conference at Cedars-Sinai on May 22. The event at Harvey Morse Auditorium, titled "Better Planning, Better Care: Promoting Dignity, Reducing Suffering at End of Life," was the first to be sponsored by a recently formed coalition called the Los Angeles Advance Care Planning Group.

Jonas Green, MD, MPH, associate medical director of Clinical Effectiveness for the Cedars-Sinai Medical Network, said conference participants are working toward a day "when no Angeleno dies with family, loved ones and healthcare providers uncertain as to that person's preferences regarding goals of care."

It's the first such effort in a large metropolitan area.

The main order of business was to issue a joint set of recommendations on how to ensure that the care patients receive as they approach the end of life reflects their values and goals, and avoids treatments that can do more harm than good. But this gathering of about 135 people also provided a forum for frank dialogue about the challenge of bringing about change in a culture in which the subject of death remains largely taboo.

As several panelists pointed out, the failure to do advance care planning and have conversations about end-of-life care before a health crisis leads to costly medical treatments — about a quarter of Medicare expenditures go toward care in the last year of life — that may involve greater burdens than benefits for patients.

The coalition of healthcare providers has set out to change this with guidelines that aim to make advance care planning a standard part of medical care.

"We aim to shatter the taboo surrounding discussions of death, and thereby make today the first step toward a day when no Angeleno dies with family, loved ones and healthcare providers uncertain as to that person's preferences regarding goals of care," said Jonas Green, MD, MPH, associate medical director of Clinical Effectiveness for the Cedars-Sinai Medical Network.

Conference participants heard a powerful message from the patient and family perspective from keynote speaker Katy Butler. The journalist and author of the 2013 memoir "Knocking on Heaven's Door: The Path to a Better Way of Death," told them the taboo surrounding end-of-life discussions has "created an epidemic of unnecessary suffering on the way to death."

Guidelines for End-of-Life Care

The end-of-life care guidelines developed by the Los Angeles Advance Care Planning Group reflect consensus among nearly a dozen private and public healthcare institutions that collectively care for more than 5 million Southern Californians, about half the population of Los Angeles County. The guidelines call for doctors and medical systems to:

  • Encourage all patients to engage in advance care planning, and make this approach standard so providers can deliver appropriate care that reflects each patient's values and preferences
  • Facilitate timely access to palliative care and other support services such as hospice care for patients with chronic and progressive illnesses
  • Advise patients about the potential benefits and drawbacks of medical treatments, and whether such care can deprive individuals of a peaceful death
  • Engage in "shared decision-making" with patients to reach conclusions about what constitutes optimal care in particular situations

Butler shared the story of how her father "lived into a time where he had no reason to live." A pacemaker kept his heart going for years after the effects of a stroke and dementia deprived him of the ability to have a meaningful quality of life.

"We don't like to say there comes a point for many people when living stops being a blessing and becomes a curse, and this can be compounded by medical treatments designed to maximize longevity that actually destroy the remaining quality of life," she said. "The medical profession has not succeeded in making sure we are managing our technologies for the service of deep human values."

Butler called it a "harsh kindness" for healthcare providers to initiate conversations about end-of-life care with patients before they face a health crisis that could make it impossible for them to speak for themselves.

"People in Los Angeles can experience a good death as a result of you being here today, as a result of you having the moral courage to start these conversations early," she said.

Glenn D. Braunstein, MD, vice president of Clinical Innovation at Cedars-Sinai and one of the leaders of the Los Angeles Advance Care Planning Group, called the conference a "historic moment" for healthcare in the Los Angeles region.

"We all came together to announce and support a common set of recommendations to help physicians reduce suffering and promote dignity for dying patients. Los Angeles is the first large urban city in the U.S. to do this," he said. "There was a tremendous amount of positive energy at the conference, and we anticipate that this collaborative effort will have a significant impact on the quality of end-of-life care in this region."

The Los Angeles Advance Care Planning Group includes the following institutions: Cedars-Sinai, HealthCare Partners Medical Group and Affiliated Physicians, Huntington Hospital in Pasadena, Kaiser Permanente Southern California, Keck Medical Center of USC, LAC+USC Medical Center, MemorialCare Health System, Olive View-UCLA Medical Center, Providence Little Company of Mary Medical Center Torrance, Providence TrinityCare Hospice and the UCLA Health System. The group issued a joint statement defining optimal end-of-life care (see PDF link below).

In her keynote speech, author Katy Butler said the taboo surrounding end-of-life discussions has "created an epidemic of unnecessary suffering on the way to death."

Jason Weiner, senior rabbi and manager of the Cedars-Sinai Spiritual Care Department, moderated a panel discussion that featured faith leaders from across the religious spectrum, including Buddhism, Catholicism, Christianity, Islam and Judaism. They talked about how they are encouraging their congregations to do advance care planning and have conversations about their wishes, and also shared their views on what it means to have a "good death."

"A good death has everything to do with how we live. I don't know how you get to a good death without living a good life," said the Rev. Care Crawford of Bel Air Presbyterian Church. Others linked a "good death" to having a sense of peace, having healthcare providers and caregivers you trust, being free of pain and knowing you are not alone.

Braunstein noted that plans for the coming year include collaborations among the healthcare providers in the coalition and religious organizations, to help them help their congregants do advance care planning.

There also will be collaboration among the healthcare organizations, which will come together for a second conference next year to report on what they have accomplished. The 2015 conference will be hosted by UCLA, and Neil Wenger, MD, MPH, director of the UCLA Healthcare Ethics Center, ended this year's event with a call to action.

"This group is extraordinary, and our job is extraordinary," he said. "What I take away from these panel discussions is that we can generate a different community standard. Our job over the next year is to go out and build on this beginning."

Advance Care Planning Group Statement (PDF)