Introduction   “When a person faces a fatal disease that is likely incurable, he or she faces specific decisions not only about medical treatment but also about broader, existential issues concerning the best way in which to spend his or her remaining time.” (Hammes 1998)

Clinician-patient discussions about end-of-life treatment are often framed as a choice between “medical treatment vs. treatment withdrawal.”  When framed in this manner, treatment withdrawal is a negative choice that often implies giving up, abandonment, not giving the doctor a chance to do his or her job, and not caring; this option would seem to be no option at all.

Bernard Hammes PhD suggests that clinicians reframe the clinician-patient dialogue about end-of-life treatment by starting a conversation with the patient focused on the question “How can we help you live well?”  The goal of the living well interview is to elicit the patient’s perspective regarding how they want to spend their remaining time.  Treatment decisions are then discussed within this broader context of patient goals and hopes.  Consequently, medical treatments become tools for achieving patient goals.

The Living Well Discussion

• When:  Begin soon after the diagnosis of a life-limiting condition.
• Who:  Clinician (e.g. physician or advanced practice provider), members of the IDT (social worker, chaplain, nurse, psychologist, etc.) the patient, and family and/or other support persons.
• How:  Begin by expressing a need and interest to understand the patient’s views.  The clinician’s initial goal is to develop a broad understanding of the patient’s hopes and goals, not to develop a specific medical plan.  Utilize chaplains, social workers, psychologists and other members of the IDT in this discussion, as these professionals can draw upon their well-developed skills in empathy, compassion, and communication to attain a broader perspective of the patient’s views, as well as foster clinician skill development in interviewing within the living-well framework.  Specific treatment decisions are then made only after the patient and IDT have developed an understanding of the patient’s broader goals.
• What to say:  Given what we now know about your medical condition…
  • How can we help you live well? What makes you happy?
  • Maintaining or fulfilling what activities or experiences are most important for you to feel your life has quality, or for you to live well?
  • What fears or worries do you have about your illness or medical care?
  • If you had to choose, would you want us to focus on helping you live longer even if that made you feel worse or on feeling well even if that meant you may not live as long?
  • What needs or services would you like to discuss?
  • What do you hope for your family?
  • Are there any special events or activities that you are looking forward to?
  • What sustains you when you face serious challenges in your life?
  • Do you have religious or spiritual beliefs that are important to you?
  • In what way do you feel you could make this time especially meaningful to you?
  • Most medical care is about making small sacrifices in the interest of improving your health for tomorrow.  But considering your underlying illnesses, I am hoping you can guide me in helping you make today a better day for you.

References

1.Hammes BJ, Bottner W, et al.  Expanding frames…opening choices: reconsidering conversations about medical care when cure is     not possible.   Illness Crisis Loss. 1998; 6(4):3252-56.

2. Hammes BJ, Rooney BL.  Death and end-of-life planning in one midwestern community. Arch Int Med.  1998; 158:383-390.

3. Guwande A.  Being Mortal: Medicine and What Matters in the End.  New York : Metropolitan Books, Henry Holt and Company, 2014.

Fast Facts and Concepts are edited by Drew A Rosielle MD, Palliative Care Center, Medical College of Wisconsin. For more information write to: drosiell@mcw.edu.  More information, as well as the complete set of Fast Facts, are available at EPERC: www.eperc.mcw.edu.

Version History:  This Fast Fact was originally edited by David E Weissman MD. 2nd Edition published July 2006; 3rd Edition May 2015. Current version re-copy-edited April 2009; then again in August 2016 with reference #3 added and communication language updated.