Encouraging End of Life Discussions to Improve Care, Enhance Patient Decision Making and Reduce Suffering

by Deirdre Mylod, Executive Director, Institute for Innovation | Mar 04, 2015

My mother died this past 4th of July—a fitting date for a woman who had taught American History and could recite Longfellow’s "Paul Revere’s Ride" from memory. It was sad, and hard, and I miss her.

In one respect, however, I consider myself to be lucky: I know with certainty that she had what she wanted at the end. We had been talking about her end of life choices for 15 years. I knew what she valued. I knew what trade-offs she was willing to make.  We’d long agreed that when the time came, her job would be to call the shots and my job would be to make sure that her requests were heard. While the conversations were hard, they also bestowed an inconceivable comfort and assurance when I needed it the most. There is great peace in knowing I did what I’d promised and in never having to wonder if we did the right thing. I know we did, because she decided what the right thing was for herself.

This month our Founding Executive Council (FEC) members met and discussed the barriers and challenges of ensuring that clinicians and caregivers support end of life discussions with patients. It was a rich and varied conversation. Some of the usual barriers emerged in terms of the discomfort that clinicians have with talking about death in general, the uncertainty of when in the course of a patient’s trajectory to raise the topic, as well as the concern over how to prepare a patient for the conversation itself and how to offer the right time and space for the discussion.

Not surprisingly, findings from national patient experience data underscore the benefits of having end of life conversations for patients, their families and even the hospital organization. Patients who report being given information about their end of life options evaluate their hospital experience more favorably. And family members who have experienced hospice care for a loved one almost never report that hospice care was begun ‘too early.’ With benefits that are so apparent, why aren't end of life discussions more common? What can we do to encourage and support them?

The FEC members discussed a number of initiatives within their own organizations to promote good end of life discussions and documentation. A few key themes and approaches emerged, including:

  • Learn by doing. Several FEC members described training programs in place to help staff know when and how to broach the topic. Interestingly, one organization encourages their clinicians and caregivers to address their own end of life planning as part of their training. By going through the process and formalizing their choice of alternate decision-makers and value trade-offs, they become more comfortable with the process and have authentic personal experience to share.
  • Start the conversation early. Another theme that emerged was the move to make end of life discussions a more routine part of care that is addressed earlier in the patient’s trajectory. By standardizing questions, discussion and documentation for patients– not just those in decline–some of the emotional intensity is removed so that clinicians become more comfortable with the topic and there is more time for patients to thoughtfully consider their wishes.
  • Use words that convey a personal connection. We also discussed the importance of language and the choice of words that are used. For example, asking a patient “What do you hope for?” allows a clinician to elicit information about goals and values but importantly conveys an emotional concern for the patient and an interest in sharing in their hopes.
Don’t all of us need someone to understand our hopes? At the end of life, this may be the most important medicine of all. Let’s keep the conversation going. Please email Institute: End of Life Best Practices and let us know what your organization is doing to promote end of life discussions and decision-making.