National Healthcare Decisions Day is April 16
By INDU SPUGNARDI
On April 16 CHA and the Supportive Care Coalition, along with other health care, legal and religious organizations across the country, will recognize National Healthcare Decisions Day as part of a concerted effort to focus the public's attention on the importance of discussing and documenting advance care decisions.
PeaceHealth St. Joseph Medical Center in Bellingham, Washington, prominently displayed photos of staff and community leaders in the run-up to National Healthcare Decision Day 2019. This year, because of the coronavirus outbreak in the Northwest, the entire PeaceHealth system is hosting virtual events to promote advance care planning
The initiative was launched in 2008 by Nathan Kottcamp, a lawyer who serves on hospital ethics committees and witnesses firsthand the confusion and conflict experienced by families when health care decisions need to be made for a loved one who can no longer communicate but did not make their preferences known beforehand. National Healthcare Decisions Day is now part of The Conversation Project, an initiative of the Institute for Healthcare Improvement.
In its 2014 report Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, the National Academy of Sciences defines advance care planning as "the whole process of discussion of end-of-life care, clarification of related values and goals, and embodiment of preferences through written documents and medical orders. This process can start at any time and be revisited periodically, but it becomes more focused as health status changes."
The decisions made in these discussions are documented in advance directives. These are legal documents that provide direction on life-sustaining treatments when an individual is no longer able to communicate (living will) and that specify the individual's chosen decision-maker (health care power of attorney).
Advance care plans can be developed at any time, whether people are sick or well, and can be revised and updated throughout the person's life as health status and living circumstances change, Dr. Joanne Lynn explained in comments for the Centers for Disease Control and Prevention's issue brief, Advance Care Planning: Ensuring Your Wishes Are Known and Honored if You are Unable to Speak for Yourself. Lynn is a geriatrician and hospice physician who heads the Center on Elder Care and Advanced Illness for Altarum, a nonprofit research and consulting organization that works to advance health among vulnerable and publicly insured populations. She wrote that advance care planning is about planning for the "what ifs" that may occur across the entire lifespan.
Disparities in planning
In 2016 The Economist and the Kaiser Family Foundation polled people in America, Brazil, Italy and Japan about their hopes and worries related to their end-of-life care. Over half (56%) of U.S. adults said they've had a serious conversation with a loved one about their own wishes for end-of-life medical care, though the responses varied based on demographic factors including:
- Age: 28% of adults under age 30 reported having had the conversation versus 73% of people age 65 and older.
- Marital status: 69% of married adults versus 43% of unmarried adults had had a conversation focused on their end-of-life treatment preferences.
- Race/Ethnicity: 63% of Whites, 58% of Blacks and 40% of Hispanics said they'd had a conversation with a loved one about their own wishes for end-of-life medical care.
The most common reason given by respondents of all races/ethnicities for not having had the conversation about end-of-life care preferences was the belief it was unnecessary for healthy people to do so. The survey found significant age-related differences in the completion of written advance directives. Overall, only 27% of U.S. adult respondents said they have set out their end-of-life wishes for medical treatment in a written document. That ranged from just 8% of those under age 30 to 51% of those age 65 and over. Among the 72% percent who do not have their wishes written down, 49% said they had not gotten around to it and 27% said they'd never considered doing it.
The survey also found completion rates for advance directives varied by race and socioeconomic status (these differences also persist after controlling for age and other demographics):
- Race/ethnicity: 35% of Whites versus 15% for Blacks and 11% for Hispanics have advance directives.
- Education: 33% of college graduates and 20% of those with a high school degree or less have advance directives.
- Income: 33% of respondents with a household income over $90,000 versus 20% for those with income less than $40,000 have advance directives.
The 2016 study on end-of-life wishes also asked about advance care planning conversations with health care providers. While just 11% responded that they've had such a conversation with a provider, 92% said they would be comfortable having the discussion. Denise Hess, executive director of the Supportive Care Coalition, sees this result as an opportunity for health care organizations. "This puts health care providers in a good position to raise awareness about advance care planning, as part of patient and community health education efforts," she said, adding that these efforts should be tailored to reach groups that are completing advance directives at lower rates.
Many health care organizations use National Healthcare Decisions Day as an added opportunity to promote advance care planning among their employees, patient populations and in their communities. In the run-up to decisions day last year, PeaceHealth St. Joseph Medical Center prominently displayed a collection of photos of physicians, nurses, other staff and community leaders holding copies of their advance directives.
A poster advertises a monthly workshop on advance care planning at St. Luke's Health Education Center, which is near the main campus of St Joseph Medical Center.
Daleash Hall, system director of hospice and palliative care for PeaceHealth, said the system has revised its plans for National Healthcare Decisions Day 2020 because of the coronavirus outbreak, which has hit the Northwest region the health system serves particularly hard. Instead of community classes and information tables, the system will only hold virtual events, such as social media outreaches to guide the public to websites. A campaign on the system's health app incentivizes PeaceHealth caregivers to talk about their goals and values, watch a video on advance care planning and commit to filling out their own advance directive and getting it in their medical record.
PeaceHealth has advance care planning coordinators in all its networks who lead classes on advance planning and it provides clinical training focusing on "communication skills and knowledge about the documents that support patients' goals and wishes," Hall said.
The Institute for Human Caring, a part of Providence St. Joseph Health, will make available to all 120,000 Providence St. Joseph employees a National Healthcare Decisions Day toolkit. It has both printed and digital versions. The toolkit includes an op-ed by Dr. Ira Byock, founder and chief medical officer of the institute; extended and short "EZ" advance directive forms in multiple languages; posters, tent cards and flyers. Digital versions of the toolkit also will have links to videos about advance directives.
Going deep and wide
As health care organizations prepare their outreach efforts, the Supportive Care Coalition's Hess stresses the importance of involving mission leaders, social workers, chaplains and ethics committee members to broaden the reach. Palliative care and hospice staff also have the training and background to help with outreach and staff education activities. Working with parishes and other faith communities can also extend the reach of the organization's efforts into the community.
On The Conversation Project's blog, Ashley Areyan, development and community engagement director at the Institute for Human Caring, discusses her efforts to engage faith leaders in her Los Angeles community. Her work with the Archdiocese of Los Angeles includes offering a two-hour workshop called Care and Prepare at churches. She gives advice to parishioners on how to proactively seek the health care they want. An expert from the archdiocese speaks about the Catholic teachings on end of life.
"After every presentation, workshop, whatever it is, there are always people who come up and say how genuinely grateful they are to have had this conversation," Areyan wrote. "Literally every single time."
Resources for National Healthcare Decisions Day
CHA and the Supportive Care Coalition resources for National Healthcare Decisions Day can be found at www.chausa.org/nhdd. The materials can be used by their members to promote the day on social media and to educate patients, staff members and the broader community on how to prepare an advance directive. The website nhdd.org offers many ideas and suggestions for health care providers, including communications toolkits and collateral materials that can be branded by the organization.
In addition to providing advance care planning resources to individuals and communities at theconversationproject.org, the Institute for Healthcare Improvement offers "Conversation Ready" resources to help health care organizations and clinicians provide end-of-life care that is aligned with patients' stated goals, values and preferences. Resources include "Conversation Ready": A Framework for Improving End-of-Life Care (2nd Ed.) and How to Talk to Your Patients about End-of-Life Care: A Conversation Ready Toolkit for Clinicians.