Faith, stewardship and advanced care planning

BOULDER, Colorado — The Rev. Cindy Ray, executive director of the Presbyterian Association of Homes and Services for the Aging, was in her wheelhouse Friday offering a workshop on the intersections of faith, stewardship and advanced care planning during the Presbyterian Older Adult Ministries Network annual conference.

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She opened with a slide of her parents, Jerry and Gerry, who were married for 70 years. Her dad suffered a massive stroke four years ago and was placed on a respirator, even though it was his wish not to be kept alive by artificial means and to die in the company of his family. Her mother had to decide when to take him off the respirator. “I was so glad to have that advance directive,” Ray said. “We told our mom, ‘you are honoring his wishes.’”

Some months later, Gerry had a heart episode, and as medics were carting her away, she raised a fist and told them, “I have a DNR! Tell them I have a DNR!”

“It was a declared thing she could rest on,” Ray said.

Ray said that any conversation on advanced care planning should be multigenerational. “I encourage families to bring their grandkids into it, especially if they are grown,” she said. “It also allows them to grapple with the fact that the lead generation won’t be with them forever.”

The biggest question to be answered is, who will speak for you if you can’t speak for yourself? Not only is it a planning process for making decisions about future medical care, it’s “a matter of faith,” Ray said, since “God is the sovereign author of our life” and life is “a sacred gift, but our bodies are vulnerable.”

“Death is a reality, but it is not the final word,” Ray said. “Our hope is in the resurrection and the promise of eternal life.”

Ray was careful to point out that some of the information she shared during the workshop varies from state to state.

Someone who agrees to implement health care instructions on your behalf if you are unable must be able to answer “yes” to a few questions, Ray said, including:

• Are you willing to take on this role and responsibility?
• Do you understand my wishes for future health care?
• Can you make the decision I would want to make, even if you disagree? “This is often the most difficult one to answer,” Ray said.
• Can you make important health care decisions under stressful situations?
• Do you feel you can strongly advocate in the face of family members and others who may challenge my wishes?

Ray also discussed what a power of attorney and an advanced health care directive do. The latter includes medical treatment you want and don’t want, how you want your agent to make decisions, how you want your pain to be managed, where you want to receive care, your preferences regarding mental health care treatment, instructions if you are pregnant, your desire to donate organs and tissues, and plans for your funeral arrangements. Many pastors have heard all kinds of requests in that last category, including “don’t clean me up too much,” “make sure every pew has tissues,” “I want the service to include plenty of jokes” and, Ray’s favorite, “I want my service to be elegant.”

Ray noted that 9 in 10 people say talking with loved ones about end of life care is important, but Pew Research reports that fewer than 3 in 10 people have done so. “Those have been some of the most blessed moments in my ministry,” Ray said.

She also had ideas about how to open what is for some a difficult conversation:

• Choose a comfortable and private setting to avoid interruptions or time constraints.
• Initiate the discussion by saying something like, “I know this isn’t easy to talk about, but if I get sick or have an accident and can’t make decisions for myself, I’d like to share what would be important to me so you could be my decision-maker.”
• Share your thought process. Explain that you have been thinking about the future and want to be prepared. Frame the conversation in a way to help the family and ensure wishes are respected.
• Focus on your faith, stewardship and values. Talk about what you appreciate about life and how your values and beliefs are guiding your preferences for medical care.
• Explain the why. Let your family know that talking about this now can help them make decisions later and avoid conflict and guilt.
• Explain the default. Clarify that without a directive, health care providers’ default is to “do everything,” Ray said, which may not align with your wishes.
• Be prepared for discomfort. Acknowledge that these conversations can be uncomfortable for everyone, but sharing your feelings can help launch the discussion.
• Take your time. It’s not necessary to cover every detail in one meeting. Ray’s advice was to start with “a brief chat, and let it evolve into a series of ongoing conversations.”

Or, flipping the script, you can ask about your loved one’s plans: “Have you thought about how you would like to be cared for if you had a devastating injury or illness or if you couldn’t speak for yourself?”

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Ask the loved one to reflect on their faith, stewardship and values. Ask them what they appreciate about life and how their values and beliefs might shape their preferences for medical care.

Continue the conversation on their terms. Assure them you’re asking because you care and want to see that their wishes are honored. Remember: this is about them, not you.

Document everything, Ray recommends. Share the completed form with the health care agent, family members, health care provider, pastor and lawyer. Keep the originals in a safe, accessible place.

Or, as Ray’s mother said: “When you need to do a hard thing and you find yourself avoiding it, do it anyway, but not for you — do it for the good of another. Be motivated by love, respect and honor for others. Do it because they matter and what we choose to do matters to them.”

Closing her presentation with wisdom from Psalm 90:12, Ray said, “we all ought to be counting our days and acting in wisdom as best we can.”

“Lean on the resources of faith, family, and the health care system,” she said, “and have open and frequent conversations.”