A Conversation with Ellen Goodman about the Conversation Project




There’s a big gap between what Americans say they should discuss and what actually happens when it comes to one’s wishes about care at the end of life. A new national survey released by The Conversation Project reveals that while more than 9 in 10 Americans think it’s important to talk about their own and their loved ones’ wishes for end-of-life care, less than 3 in 10 have actually held these sorts of discussions.

“We have arrived at something of a sea change. Americans now overwhelmingly agree that it’s important to talk with our loved ones about how we want to live at the end of our days. Yet, we still find it hard to begin those conversations,” stated Ellen Goodman, Founder of The Conversation Project. “We need to close the gap so that people will die in the way they would choose.”

The Conversation Project was launched one year ago in collaboration with the Institute for Healthcare Improvement (IHI) to enable more people to sit down at the kitchen table with family members and friends, and talk about what will matter most at the end of their lives. Through a public engagement campaign, a web site, story sharing and other tools, the project encourages people to have these discussions long before there’s serious illness or a health crisis.

Many have taken its message to heart, with more than 62,000 downloads of The Conversation Project’s Starter Kit to date. The new survey shows there are still plenty of barriers as shown in the survey highlights below:

 1. It’s always too early, until it’s too late.

a. There are a host of reasons why Americans haven’t discussed their own wishes. Top reasons from the survey include: It’s not something they need to worry about at this point in life (29%),
they aren’t sick yet (23%), the subject makes them feel uncomfortable (21%), or they don’t want to upset their loved ones (19%).
b. Similarly, among those who haven’t talked about their loved ones’ desires for their final days, top reasons for avoiding the conversation are “it never seems like the right time to discuss it” (25%) and “it isn’t something they need to worry about at this stage in their life”(21%).

2. Everybody is waiting for someone else to start.

a. One-fifth of Americans who haven’t broached the subject are waiting for their loved ones to bring the topic up first.
b. Yet anxiety over initiating the conversation is unnecessary, as nearly half (48%) of Americans say that if a loved one asked them about their wishes for end-of-life care, they’d welcome it and be relieved to discuss it. Another 41% admit that while it would be a difficult discussion to have, they’d be willing to do it.

3. When we do talk, the experience is improved.

a. More than half of those who have lost someone without ever discussing end-of-life wishes admit that some aspect of the experience could have been improved if they’d had a conversation.
b. Those who did have such a conversation had what could be considered a more positive experience in their loved ones’ final days – 63% say they felt better knowing they were honoring the wishes of their loved ones, while 39% know their loved one was able to die just the way they wanted.

 

Note: The Conversation Project started in 2010 when a group of colleagues and concerned media, clergy, and medical professionals gathered to share stories of “good deaths” and “bad deaths” within their own circle of loved ones. Over several months, a vision emerged for a grassroots public campaign spanning both traditional and new media that would change our culture. The goal: to make it easier to initiate conversations about dying, and to encourage people to talk now and as often as necessary so that their wishes are known when the time comes.

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  • Sandra Escalante

    This is an important project. Every person has the right to be treated like she or he wants to be treated. Establish the personal key points according with their wishes is the best they can do.

    • http://geriatrics.stanford.edu VJ Periyakoil

      Sandra:
      The biggest challenge is the timing of these conversations in a couple of different ways:
      1. the patient is ready to talk but the family members are not ready yet.
      2. the doctors have very limited time and are not able to have these conversations in a non-crisis setting.
      Thus it invariably becomes a crisis conversation when emotions run high, and the patient is often too sick to have a “voice” in the conversation.
      VJ Periyakoil, MD

      • https://www.facebook.com/Paliativos?ref=hl Sandra Escalante

        I’m agree with you, in this cases happens that:

        1. The patient has a very Healthy Spiritual Dimension and is ready to talk, but the family members have an important Grief about their loved one and are not ready for talk. This is complicated, this family needs to be treated their grief with Palliative Care and when they get over their grief, they will be able to talk with their loved one. I consider in this case when some one of the family its ready to talk, must create the time to start the conversation.

        2. Maybe the doctors have a very limited time to talk, but it’s not the case for the Palliative Care Staff that has the time to create the space of these important conversations.

        3. When family is not ready to talk, is important that some one of the Palliative Care Team carry out the conversation until the family gets ready to talk.

        Sandra Escalante

      • Dr. Rasin-Waters

        Psychologists are needed on every palliative team – people and conversation experts.

        • https://www.facebook.com/Paliativos?ref=hl Sandra Escalante

          I like your comment. I’m Psychologist.

  • Charlie Antoni

    Great interview many
    salient points e.g. both providers and consumers need information share equally
    as participants in health care decsions. The concept of a facility or
    practioner being “conversation ready” is a phrase and concept I will
    utilize in my own practice and advocacy; along with the concepts of
    “expressed and respected”.

    • https://www.facebook.com/Paliativos?ref=hl Sandra Escalante

      Hi Charlie,
      Expressed and respected concepts are person centred ones, I utilize both with my patients, in return they invite me to visit them more often. They feel very happy.

  • http://geriatrics.stanford.edu VJ Periyakoil

    Thanks Charlie. I am becoming more and more convinced that between expressed and respected, the “respected” part is a bigger issue. I recently taught a huge group of community based older adults about advance care planning.

    I was very surprised to find that almost the entire group believed that documented advance directives are automatically honored all the time. However studies show that the end-of-life care patients receive depends not on
    patients’ care preferences, their advance directives (AD) but rather on the
    local system variables like institutional capacity and doctors’ practice style. There is much work to be done at a system level to make helath institution provide preference-sensitive care.