Kavod Conversation; End-of-Life Collaborative:
Faith Community Change Package

Introduction

As we aim to increase the number of conversations people are having about end-of-life care wishes and increase the number of people who designate a health care agent, we recognize that there are practices or actions that need to be implemented or changed and improved in congregational settings. The focus of this document is to connect the dots between our shared aims and the things that clergy and lay people in the faith community can plan, do, test, and evaluate to determine if those practices or actions have a positive impact on reaching the shared aims.

Eliciting and respecting a person’s wishes for end-of-life care are important aspects of ensuring quality care for patients and families. However, most people do not discuss these wishes or routinely make plans for end-of-life care.  Moreover, many people do not engage in these conversations with their clergy-or even with loved ones-before a crisis arises.

We believe that if clergy and congregations institute preaching, programs, and pastoral practices that encourage and support values-based conversations about end-of-life wishes, more people will have those crucial conversations, and will make crucial decisions in advance, including designating a health care agent.  People who are well-prepared and have some experience in these conversations will become stronger, compassionate advocates for themselves and their loved ones about the kind of care they want to receive-and don’t want to receive–in the health care system.

This Change Package will support you and your team in thinking systematically about the kinds of changes you can work to implement within your community to improve the likelihood that more people will have conversations, make decisions, designate a health care agent, and commit their plans to writing. Outlining your plans for making changes in this way will facilitate communication among team members and the wider congregation, including staff and board members. Together, you will have greater clarity about what changes to make, how they affect your community, and whether they were helpful in reaching your aims.

Examples of changes are organized in seven categories of activities that are practiced in many congregations. We understand these activities to be grounded in and informed by the Conversation Ready Actions and Principles of Study, Engage, Infuse, Steward, Respect, Exemplify, and Connect that guide our work in this Collaborative. These are elaborated on in the text that follows.

Please keep in mind that no organization is expected to implement all of these changes during the time frame of the Collaborative, nor is your team limited by the examples of change ideas. However, our experience suggests that some changes are more likely to lead to improvement. Implementing and testing those recommended changes will provide us all with more results that will confirm or challenge our experience and assumptions.

As ever, the Kavod Conversation team is ready to answer your questions as you embark on this aspect of using the Model for Improvement in your setting to improve the lives of those you serve.

The Conversation Ready Principles

We as clergy and lay leaders in a faith community:

Take the following actions:

1.     Study our faith’s literature, past practice, and current implementation of approaches to end of life decisions.

2.     Engage with congregants to understand what matters most to them at the end of life.

We proactively encourage our congregants to articulate and share their values-based wishes for end-of-life with their loved ones, health care providers, and clergy. Embracing the reality of mortality and recognizing what may matter most at the end-of-life is a spiritual and developmental process which we support with education grounded in our faith’s precepts and ethics. An individual’s wishes may change over time and with circumstance. Thus, we recognize that preaching, programs, and conversations themselves are not a once-in-a-lifetime or monolithic event, but are repeated and integrated over time.

3.     Infuse this information through all aspects of congregational work, paying particular attention to those who are isolated and vulnerable.

4.     Steward congregant information through the cycle of life, particularly for the most isolated and vulnerable.

While the health care system may ultimately be responsible for recording a patient’s wishes in order to treat the person and her wishes with reverence, we are inquiring into the responsibility of clergy and staff to steward such information beyond the walls of our congregation and into the health care system. How do we understand our covenantal responsibility to the elderly, isolated, gravely ill, and mentally ill? What kinds of processes would need to be established and maintained if we were to take seriously our role in stewarding congregants’ values-based wishes? The Faith Community Team’s investigation into these queries will add significantly to our collective knowledge and understanding about how-or whether-the Steward principle applies in congregational setting.

That expand on the principles:

5.     Respect and be present to hear people’s wishes for care at the end of life.

As spiritual guides and witnesses, we accompany people through illness and dying. We do not abandon people in times of suffering. We accompany people and their families as they advocate for “what matters most” into a health care plan that is consistent with their needs, values, and hopes. We help recognize that a patient’s wishes and beliefs are sacred and deserve to be integrated into care planning. 

6.     Exemplify this work in our own lives so that we fully understand the benefits and challenges

We as people of faith lead by example, and commit to having conversations about our wishes with loved ones. By doing so, we more deeply understand the process, the challenges, and the emotions and fears that can arise.  Our effort fosters our congregation’s openness, willingness, and faithful commitment to increase awareness about having these crucial conversations.

7.      Connect with individuals, their loved ones, and health care providers in a spiritually, culturally and individually respectful manner.

We understand that beliefs and needs around the topics of death and dying are deeply personal and connected to cultural backgrounds, spiritual beliefs and practices, as well as to individual life experiences.  This applies to clergy and lay people, as well as to the health care professionals we rely upon.  We work to understand and articulate our beliefs, and share them in a way that supports others in caring for one another in a respectful manner through and beyond the end of life. 

Area	Changes to Test	Examples
Teaching	Sermon and Teach on topics pertaining to End-of-Life	Write and deliver a sermon on why “talking matters” during Conversation Sabbath, November 11-20, 2016, with a call to action to have “The Conversation”
		Choose parshiot (weekly Torah portion) such as the death of Sarah, Jacob blessing his children, death of Moses, to lay the groundwork for congregational discussions.
		Use Yom Kippur, when the largest number of congregants are present and when we say Yizkor (remembrance of relatives who died), to tie the day to end of life practices, and to use time set aside for reflection as a way to encourage end of life conversations
		Identify other preaching themes and supporting texts to ground and guide a sermon on the topics that touch us all. (e.g. aging well and wisely, caregiving, caregivers, ethics, and suffering)
		Preach on the importance of being present for one another in times of need and suffering using excerpts from Job
	Worship Planning	Plan and implement a thematically integrated, intergenerational worship service that addresses the importance of having The Conversation
		Use non-Yom Kippur Yizkor to structure a service with a “Conversation” or “Death and Dying” theme.
		Prepare a list of texts, readings, poems, and songs that could be used in a service during “Conversation Sabbath”, recognizing there are elements of celebration to be incorporated (e.g. celebrate our courage to embrace the reality of our mortality; celebrate the beauty and power of being alive today with time to plan and make our wishes known, etc.)
		Identify members of the congregation who would be prepared to recount or tell a story during a service about the challenge or blessing of having “The Conversation” and the difference it made
		Write and share your own story about an experience of a hard or a good death and what it taught you
Nechama – Comfort	Professional and volunteer training to  develop capacity for discussing EOL among clergy, staff, lay leaders and congregants	Attend a clergy retreat or seminar on EOL care conversations
		Offer a workshop for your pastoral care associates or committee on how to facilitate having “The Conversation” with congregants they visit
		Work with Cantor or Music Director to recruit and train choir members to accompany the sick and dying with chanting or other music (e.g. Threshold Choir)
	Develop or update a library of documents pertaining to EOL care and wishes	Convene clergy, staff, and lay leaders to discuss the role of the congregation in maintaining records about EOL wishes
		Host a group to study and discuss pertinent texts on care of the stranger, who is one’s neighbor, care for the widow and orphan, or other related themes. Ask: how might these sacred texts inform our practices for stewarding individual congregant wishes for care outside the walls of our congregation?
		Convene a group to inquire: How do we understand our covenantal responsibility to the elderly, isolated, gravely ill, and mentally ill? What kinds of processes would need to be established and maintained if we were to take seriously our role in stewarding congregants’ values-based wishes?
		Review or build and maintain a system for recording and retrieving individual wishes and/or documents related to health care agents, funeral/memorial services, burial, and other matters that engage our spiritual connection with one another
Tachnit -Programs – Internal	Offer programs that train and encourage people to reflect on and share “what matters most”	Plan, promote, and implement a Conversation Starter Workshop for a board and committee chairs
		Schedule a Starter Kit Workshop and promote it to members of your congregation after preaching on the topic of EOL wishes
		Teach/Share spiritual and religious considerations in making EOL decisions
		Host a Take Your Agent to Dinner event near Valentine’s Day: bring your designated health care agent/loved one to dinner at your congregation for a focused conversation with others on “What Matters Most”
		Host a small group discussion on Atul Gawande’s best-selling book, “Being Mortal”
		Screen the Frontline program “Being Mortal” for interested adults, followed by a facilitated discussion.
	Offer programs on medical and legal considerations in making EOL decision	Present a program on secular and theological legal issues led by an attorney and a religious leader or scholar.
		Host a panel with an estate attorney, financial planner, and funeral director on making plans for you and your loved ones.
		Invite palliative and hospice care professionals to offer a program on care options and facilities in your community.
		Convene congregants who have engaged with hospice as professionals, volunteers, patients, and/or loved ones to share their perspectives and experiences with one another and pastoral leaders.
Tachnit – Programs External /Network Development	Link to health care providers who serve our community	Set up one-to-one meetings with area Visiting Nurse Association and hospice leaders, perhaps offering to be a resource on your faith tradition’s rituals and requirements for after death care of the body
		Build relationship with community palliative and hospice care providers through one-to-one meetings, perhaps sharing your congregation’s efforts and readiness to have conversations about what matters most.
		Partner with community health care providers to host a “Community Conversation” forum in your setting.
		Partner with local health care system to convene a symposium with faith leaders for a two way training between clergy and clinicians to learn about faith and cultural traditions and medical care at the end of life.
	Promote knowledge and action with interfaith community	Invite interfaith clergy colleagues to a lunch discussion to share texts and teachings that ground values-based decision making on EOL care
		Gather with interfaith clergy to share The Conversation Project’s Starter Kit guide as a way to reflect on our own wishes for EOL care, what matters most, and build capacity for talking with loved ones and congregants
		Convene and interfaith panel to meet with community health care leaders to share what matters most from our various faith traditions
	Promote knowledge and action with religious denomination colleagues and systems	Offer to lead a Starter Kit workshop at your denomination’s annual regional and national gatherings for clergy and lay leaders
		Share your learning and experience at a meeting of your clergy colleagues
		Invite clergy colleagues to gather for breakfast or lunch in a private setting to share personal and professional experiences about “hard” and “good” deaths