Heart to Heart Talks - The Living Planner

Today’s blog comes to you early in the new year with a topic that fascinates me – Communication. Particularly, communication about planning health care directives.

The topic of communication can be defined in many ways. Merriam Webster defines communication as:

the act or process of using words, sounds, signs, or behaviors to express or exchange information or to express your ideas, thoughts, feelings, etc., to someone else
a message that is given to someone : a letter, telephone call, etc.

Sounds simple enough, doesn’t it? On the surface, it is simple. We exchange information to express ideas, thoughts, feelings to someone or we deliver a message to another.

When beginning research on the topic of speaking with loved ones about planning health care directives and sharing wishes about how they envision the quality of their lives, it was sobering to learn how infrequently communication occurred between loved ones about these topics. It was inspiring to learn of sources who actively provide resources to encourage communication. It may be helpful to know about resources available today in the US to check out before you have those “Heart to Heart Talks”.

1) The Coda Alliance in the San Francisco Bay Area is a non-profit organization.

CODA Alliance and global partner organizations are making inroads regarding end-of-life conversations – now recognized as a necessity. CODA Alliance develops tools to help families introduce these conversations in a more comfortable way; one that also encourages people to have conversations before loved ones become ill. In fact, understanding the dire need for end-of-life conversations, major medical centers have begun to provide classes to help their teams hold the conversations with patients. And, many family and senior centers now offer classes to help families deal with the issues. At the same time services, including Fiduciaries and estate planners, are integrating Coda’s Go Wish cards into end-of-life discussions.

CODA Alliance, backed by research, is committed to working with families and partners to help:

community members learn about end-of-life care options
provide positive, easy ways to encourage and help families and professionals hold more comfortable discussions at any stage of life. For example, CODA created Go Wish cards that have been and are still being translated into various languages. The playing cards offer an educational, entertaining method to help families determine what’s important to them in preparing for end-of-life wishes and actions
bring organizations together to help overcome barriers to end-of-life care and preparation.

“If we can overcome the stigma of talking about end-of-life, we can ensure that families are prepared to follow their loved one’s wishes before they can’t tell us what they want,” said Julie Groves, CODA Alliance Board member. She also mentioned that CODA is in the process of expanding their website to provide more resources and languages for professionals, families and those dealing with end-of-life issues. Learn more at: The Coda Alliance.

2) Ellen Goodman’s quest to open up the doors of communication with the non-profit organization she founded called The Conversation Project.

This is their Purpose: “The Conversation Project is dedicated to helping people talk about their wishes for end-of-life care. Too many people are dying in a way they wouldn’t choose, and too many of their loved ones are left feeling bereaved, guilty, and uncertain. 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. We believe that the place for this to begin is at the kitchen table—not in the intensive care unit—with the people we love, before it’s too late. Together we can make these difficult conversations easier. We can make sure that our own wishes and those of our loved ones are expressed and respected.” Learn more about The Conversation Project @ The Conversation Project

3) Shifting culture from not talking to talking is quite an undertaking it appears.

Upon watching a TedXStanford talk between Tom Brokaw and his daughter Jennifer (An ER physician), it was sobering to hear her statistics. “Less than 30% of all Americans have prepared an Advanced Directive. She referenced a study done a few years back revealing that 50% of terminally ill patients have any kind of Advanced Directive. Of that 50%, 12% had prepared their Advanced Directives with a physician. 60-75% of physicians who care for terminally ill patients have no idea if patients have an Advanced Directive or know what the contents of one may be.” Jennifer asked her dad what his wishes were and probed to understand how he defined “terms” he used. The link to this TedXStanford talk is here Tom & Jennifer Brokaw

How do we begin to have heart to heart talks with our loved ones about their end of life plans, the legacy they wish to leave, their definitions of “quality of life”? Have you considered what you want? Could communication begin with a question, “If you weren’t able to speak for yourself, what is important for me to know that matters to you?”

Jennifer Brokaw reflected that we could begin having these conversations when we come of age, as she survived a near fatal accident in her late 20’s. Tom Brokaw used a term, “fixed certainty” in the TedXStanford Talk – referencing the end of life. There are possibilities we may encounter illness or an accident and it is a “fixed certainty” we will experience end of life. If the unexpected happened in your life, would you be ready? Would others know what to say on your behalf?

Jennifer Brokaw mentioned that as a physician she observes that families who have Advanced Directives are in much better shape emotionally, financially and otherwise. From personal experience, knowing the wishes of my loved ones gives me great comfort. It was a gift beyond anything I could have imagined, knowing specific wishes allowed a clear understanding of how to speak for them. Consider giving the gift of peace of mind for yourself, your loved ones and your health care providers before you “need” to, it is quite a gift.

Thanks for being a part of this community, Lynn

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