Helping Families Have the Most Difficult Conversation

Over the weekend I listened to a moving interview on NPR by Linda Wertheimer of former Boston Globe columnist Ellen Goodman concerning a project that Ms. Goodman helped to establish to encourage adult children and their parents to talk openly about the most difficult and challenging of life’s transitions at the end of life. It is called “The Conversation Project.” Its home page says that

“It’s time to transform our culture so we shift from not talking about dying to talking about it. It’s time to share the way we want to live at the end of our lives. And it’s time to communicate about the kind of care we want and don’t want for ourselves.”  [See: http://theconversationproject.org/about/]

Most people, Ellen Goodman says, have not had that conversation and therefore are unprepared for the inevitable, though most elderly parents have clear ideas about what they want at the end of their lives. They don’t share their wishes with their children, however, because they fear burdening and worrying them, and adult children don’t raise the matter with their parents because they fear upsetting them.

Goodman notes that as unsettling an experience as a parent’s death is, surveys indicate that when conversations about it take place there results less depression, less sorrow, less guilt, and less regret felt by everyone. The conversation can be among the richest and most intimate that we ever have together.

When there is no conversation, however, children often feel lonely and uncertain about what to do when their parents die because they do not know what their parents would have wanted. If adult children, in trepidation, fear and/or denial, avoid the inevitable and suppress conversation when their parents want to talk, their parents feel cut off and likely never will have the opportunity to make known what they really want to their children.

The Conversation Project has conducted surveys showing a substantial gap between what people want and what they have shared with those closest to them:

• 90% know it is important to have these conversations, but only 30% are having them;

• 60% say that it is “extremely important” that families not be burdened by tough decisions, but 56% have not communicated their end-of-life wishes;

• 70% say they prefer to die at home, but 70% actually die in a hospital, nursing home or long-term care facility;

• 82% believe it is important to put their wishes in writing, but only 23% have done so.

The Conversation Project’s “Starter-Kit” offers a workbook of questions that needs to be clarified and shared, and acknowledges how difficult it is for many people to know how to begin the conversation. The Project organizers suggest starting by completing this sentence: “What matters to me at the end of life is…..” 

They offer other questions for parents to ask themselves and then share with their children for discussion: 

• What is most important to me?

• What can I not imagine living without?

• What are my greatest worries at the end of my life?

• Who do I trust to talk to about my desires and wishes?

• What milestones do I want to meet before I die? 

• What do I want to know about my health?

• What do I want my loved ones to know about my health?

• How aggressive should the treatment be in the last stages of my life?

• Who do I want involved in my end-of-life care?

• What do I want my loved ones, doctors/nurses and clergy to understand about my wishes?

• Do I wish to be alone or surrounded by my loved ones when I die?

• What do I want my loved ones to do when I die?

• What affairs do I need to get in order now?

• Do I have a will/trust set up and an Advanced Directive (AD), Health Care Proxy (HCP) and Living Will in place?

The Conversation Project is a gentle, thoughtful and loving prod to help open the hearts, minds and souls of parents and children to each other as the end of life approaches.

See Wertheimer’s and Goodman’s NPR conversation here:  http://www.npr.org/2013/12/28/257822206/helping-families-have-the-most-difficult-conversation

To assist Jews in thinking about Judaism’s traditions concerning terminal illness, death, funerals, burial, and mourning, I have written a 45-page life-cycle guide called “Preparing for Jewish Burial and Mourning”  in an easy-to-use format that addresses most of the questions Jews concerning end-of-life matters, as well as a practical step-by-step guide to prepare for it.

See: http://www.tioh.org/images/Worship/ClergyStudy/preparing%20for%20jewish%20burial%20and%20mourning.pdf or http://hillsidememorial.org/images/Jewish-Lifecycle-Guide.pdf.

Don’t put off thinking about these matters, putting your wishes in writing, and discussing them forthrightly with the people you love the most. The time is now.