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Tuesday, November 1, 2016

Engaging The Communities We Serve

by Tacy Silverberg-Urian

A cultural transformation of our perspectives on dying and end of life (EOL) care is slowly beginning to take shape. There has been a significant rise in the number of mortality- and EOL-related newspaper articles, books, and documentaries. There has also been a grassroots public campaign called the Conversation Project, which is focused on initiating conversations on dying. The federal government, particularly the centers of Medicare and Medicaid, have proposed various EOL initiatives. In 2014 the IOM (Institute on Medicine) laid out a comprehensive position paper entitled “Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life, Key Findings and Recommendations,” which examines where we are as a culture. Within the paper, the authors present a considerable body of evidence, including comprehensive recommendations for improving EOL care and outreach to underserved minority communities. IOM recommendations include incorporating effective and culturally competent messaging and outreach via various media channels, using linguistically appropriate materials and other effective strategies.

As healthcare professionals, our organizations and non-profits need to test various approaches and forums to better engage our communities in dialogues about death and dying. These conversations must educate participants about the importance of completing advance directives. There is no “one size fits all” approach as people in each community are diverse in their ethnicity, socioeconomic class, age, religion, immigration status, etc. Opportunities exist for different types of outreach when teaching about serious and life limiting illnesses. This week on #hpm chat, we will be discussing various community outreach activities and our participants’ experiences in putting these forums together.

What Family and Caregivers Worry About

One such community outreach activity is to hold a screening of the PBS Frontline documentary “Being Mortal” while engaging a panel of healthcare practitioners in discussion with attendees about questions they have about topics discussed in the documentary. In the documentary, Dr. Atul Gawande, skillfully discusses his experience with life limiting illness: failing health, decision making, healthcare policies and practices, and key conversations needed during difficult times. Atul Gawande, MD, MPH, is an American surgeon, author, and public-health researcher. He is a professor at both the Department of Health Policy and Management at the Harvard School of Public Health and the Department of Surgery at Harvard Medical School. In his book Being Mortal: Medicine and What Matters in the End (2014), he expresses the belief that if physicians took the time to understand their patients when giving the news of a life-limiting illness, care in our country would radically change. He recommends that a practitioner ask the following five questions to gain an understanding of what patients want at life’s end:

  1. What is your understanding of where you are and of your illness?
  2. What are your fears or worries for the future?
  3. What are your goals and priorities?
  4. What outcomes are unacceptable to you? What are you willing to sacrifice, and what are you not?
  5. What does a good day look like?

With the screening of the Being Mortal documentary, attendees talk openly about their concerns about the care their family member needs, and who will provide it, the pain of watching their loved one’s health deteriorate, and their goal to alleviate suffering. There’s a sense of a shared understanding and concern in the room, and many people share their stories, experience and perspectives while other attendees learn from their experiences. The sharing of stories provides others with information they may not have known.

Death Conversations and Food

 Another successful activity is to host a dinner with "death" as the topic of discussion. This, of course, is a more intimate forum, usually between friends, family members, and some acquaintances, where people can share their thoughts and feelings about death with others. It may be a place to begin to discuss advance directives, or provide information about the steps involved selecting a surrogate. Often hosted by healthcare organizations, and individuals in their homes, an invitation to discuss death at a sumptuous dinner might be the place where people start to make a plan. Thankfully, the Death over Dinner website provides some great resources to anyone planning an event. It gives step by step guidance to those who need to:

  • set the intention for the death over dinner discussion,
  • identify topics to be discussed,
  • provide reading / video or audio resources for the topic being discussed
  • and invite guests to dinner.

With these resources in hand, it makes for an interesting and meaningful interaction between all the guests.

When it comes to healthy conversations about death and dying, some Americans seem interested and have initiated creative ways to begin having these important conversations. Many Death Cafe's have been sprouting up across the country to fill an important void. These cafes are places where people gather to drink tea or coffee, eat cake, discuss death, and express their wishes about what would define a good death. Participants may want to attend an event that discusses specific topics, peruse the blog postings on the website or join a discussion and add their voice.

And More Conversations

Another sign that our country is more ready to talk about dying is the launch of the Conversation Project. The Conversation Project began in 2010 when Ellen Goodman and a group of colleagues, concerned media, clergy, and medical professionals congregated to share stories of good deaths and bad deaths within their own circles of friends. A vision emerged for a grassroots public campaign covering both traditional and new media, and this campaign has been attempting to change our culture. Its goal is to make it easier to initiate conversations about dying and to assist people to talk now and as often as necessary so that their wishes are known when the time comes. This vision became a reality when the campaign began its collaboration with the Institute for Healthcare Improvement (IHI) in September 2011. IHI is a nonprofit organization that helps lead the improvement of health and health-care systems throughout the world.

While we may often talk about our wishes, we often never take the next step to completing the required documentation. We've heard the horror stories about family arguments about what a person would have wanted to do in the event of a life altering health emergency. Yet, they are faced with decisions that might have been much easier, had their thoughts and wished been committed to paper, signed, sealed and delivered to everyone who needs to know. National Healthcare Decisions day, is one of those times where people are encouraged to make their decisions known, and fill out the forms. Like Death over Dinner, the NHDD website provides resources and guidance to people hosting an event to help to lead the discussion. Aging with Dignity provides the Five Wishes form that can be easily used to write the advance directive and can be completed anytime, but most definitely at an event on National Healthcare Decisions Day.

Join us this week with cohost Tacy Silverberg-Urian to discuss community outreach in hospice and palliative care.

Tacy has worked for almost forty years in health care as a direct-care provider, clinical manager, hospice administrator, nurse leader and strategist. Author of The Last Mile of the Way, Multiculturalism and Diversity--a book about the importance of cultural competency at the end of life. Passionate CHPN, community liaison and baby-boomer who wants to "right" death.

What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 11/2/2016 - 9p ET/ 6p PT
Host: Tacy Silverberg-Urian @tacyrn_tacy

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