End of Life Decision Making

February 28, 2011 at 9:44 pm 5 comments

End-of-life decision-making is an increasing pervasive topic that has personal, political, legal, and, of course, medical implications. George Lundberg, MD said that “every American deserves the right to choose to have a death with dignity and as pain-free as medical science and practice can provide. To achieve that, patients and physicians must discuss the options for managing an upcoming death.” Atul Gawande, MD wrote in Letting Go: What should medicine do when it can’t save your life?, “But rarely is there nothing more that doctors can do. They can give toxic drugs of unknown efficacy, operate to try to remove part of the tumor, put in a feeding tube if a person can’t eat: there’s always something. We want these choices. We don’t want anyone—certainly not bureaucrats or the marketplace—to limit them. But that doesn’t mean we are eager to make the choices ourselves. Instead, most often, we make no choice at all. We fall back on the default, and the default is: Do Something. Is there any way out of this?” Gawande told about La Crosse, Wisconsin, where, by 1996, 85% of residents who died had written advanced directives.

La Crosse is the exception. Rational, informed decision-making is difficult; most people don’t know much about advance directives and don’t have good resources to learn about the many facets of end-of-life decision-making. Enter Mardi Coleman, a Master of Science candidate in Health Communication at Tufts University School of Medicine. With a background in geriatric mental health and an interest in how healthcare can meet the Institute of Medicine’s aims for a system that is efficient, equitable, effective, timely, patient-centered, and safe, she designed a end-of-life decision-making website in Online Consumer Health. The overarching goal of the website, as described in her final paper, is “to provide information that allows users to make informed end of life legal, medical treatment, and service decisions,” specifically to:

Help users clarify their understanding of their beliefs and values regarding end of life, treatments, and services, including that beliefs and values are situational and change over time.

Provide the types of information users need or want regarding advance directives, life-sustaining treatments, and services that extend or support the end of life in order to make informed decisions.

Engage first-time users and invite reuse because the website is attractive, well laid-out, and easy to use, and contains information that is relevant across many stages of decision-making.

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Entry filed under: health, online health communities, Uncategorized. Tags: , , .

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5 Comments Add your own

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  • 2. Bill Simmons  |  August 28, 2013 at 2:52 am

    I agree with David and Andre. But it is hard to write an advance directive that is simple and easy to understand. End-of-life decisions are not simple, especially when trying to anticipate issues ahead of time. And I find the advance directive forms on line and in books miss what I consider to be the key element: What quality of life do you want at the end? When one can answer that Q, then he or she, with family, can work backwards from there and write a sensible directive. Finally, let’s not forget, the conversations with family are more important than the advance directive. That’s hard for a lawyer to say, but I’m saying it. Bill Simmons, San Diego

    Reply
  • 3. Lisa Gualtieri  |  March 3, 2011 at 1:34 am

    Mardi and I appreciate the comments, David and Andre. In response to your comments and others by email, Mardi did an extensive competitive analysis as part of her paper. The sites she looked at in depth were:
    Engage with Grace (http://www.engagewithgrace.org/)
    Massachusetts Medical Orders for Life-Sustaining Treatment (http://www.molst-ma.org/)
    Aging with Dignity (http://www.agingwithdignity.org/index.php)
    Caring Connections (http://www.caringinfo.org/Home.htm)

    Reply
  • 4. Andre Blackman  |  March 2, 2011 at 4:21 am

    I think David hits the nail on the head when he mentions “easy to understand” guidelines. Many times this information isn’t built into the patient experience, let alone well known information in general.

    It goes back to issue with patients not asking their doctors questions about their health and AHRQ’s campaign to rectify. I hope that the project gets great coverage and gathers steam to make some long term changes.

    Reply
  • 5. David Harlow  |  March 2, 2011 at 12:07 am

    Looks like Ms. Coleman has identified a niche that needs filling – providing easy-to-understand guidelines to making and documenting advance directives for end of life decisionmaking. The design/readability/usability elements are key, of course, and that’s what many of us tend to forget, assuming that content alone will be sufficient.

    An even bigger challenge, to my mind, is drawing in the public. When a person needs an advance directive, it is usually too late to obtain one. Therefore, a website (or part of a website) that is set up to reach out to people when they are not thinking about health care is of vital importance.

    It seems that Ms. Coleman has thought about that, and just by way of example, that’s the thinking behind the Engage with Grace blog rally (which I’ve participated in since its inception, and I understand Ms. Coleman has considered in her research) and the related One Slide Project, which I’ve been less good about using and promoting, but which is a good model: Initiate the conversation about advance directives whenever you have a chance to do so, at Thanksgiving Dinner or at the end of a presentation at a business meeting or conference. It doesn’t have to be connected to anyone’s illness or hospitalization.

    We really need improvements in two arenas: more conversations about end-of-life decisionmaking, and better-designed materials to communicate the issues and frame the choices in a manner that is accessible to as many people as possible.

    It’s nice to know that creative minds are taking a look at how to make these improvements in a sustainable manner.

    Reply

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Lisa Gualtieri, PhD, ScM

Lisa GualtieriLisa Gualtieri is Assistant Professor at Tufts University School of Medicine in the Department of Public Health and Community Medicine. She is Director of the Certificate Program in Digital Health Communication. Lisa teaches Online Consumer Health, Social Media and Health, Mobile Health Design (online), and Digital Strategies for Health Communication (1 week summer institute). Contact Lisa: lisa.gualtieri@tufts.edu

@lisagualtieri


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