How to Initiate the End of Life Conversation with Your Client

Submitted by: Dr. Romayne Gallagher

A recent article on the barriers to end-of-life (EOL) conversations in heart failure1 revealed some ongoing paradoxes about attitudes to EOL conversations. Healthcare professionals want the patients to ask the questions and patients want the providers to take the lead. Both recognize the value of the conversations but providers don’t always have the confidence and patients don’t always want to hear them. Thus there results an “elephant” in the room between the provider and the patient that does not get addressed.

However, there are skills involved in communicating difficult information and they can be learned and mastered2 just as coronary angiography can. If a provider does not recognize communication as a skill to be acquired they may have clumsy encounters that seem to support the common myths that talking about death and dying causes anxiety and distress in patients and families.

Many healthcare providers will be very reluctant to discuss prognosis in heart failure because of the uncertainty of the survival especially in advanced heart failure. But patients who are aware of their prognosis are less likely to choose aggressive medical interventions and are open to palliative care involvement earlier in their illness3. The best way to open prognosis discussion is by negotiating what information the patient wants about their future.

“Some people like to know all the details, others just want the big picture and some prefer not to discuss it at all. What is best for you?” This allows the patient control over the information they receive. Always preface any prognostic information with an affirming statement such as “we will do all we can to help you live as well as you can for as long as you can”.

If the patient wants information you should give it in small chunks such as “Heart failure is an illness that we cannot cure and one day you will die from this illness.” Then you can acknowledge upfront the uncertainty of the prediction: “We are generally not very good at predicting how long people will live with heart failure but I would estimate that you have years/months/days. It may be a few years/ months/days or it could be up to x years/months/days.”

Allow some time for this information to sink in and be aware of the patient/family reaction. Track emotional data as you would clinical data and respond to it4. It can be as simple as “this must be hard for you” or if uncertain of their reaction you can ask “how does this make you feel?”. Before moving on to any other topic check to make sure the patient has understood what you have discussed. “Does this make sense to you?” and if you are concerned that they really have not understood you can say “Tell me what you would tell your spouse or friend about our conversation.”

If the patient does not want information try to elicit why they may be saying this. “Can you help me understand why you don’t wish to discuss this?” If concerns are expressed then be sure to acknowledge them. Always leave the door open to discuss in the future by saying “Perhaps we can revisit this later if that is OK with you? And if you decide you wish more information just let me know.” If you need a decision to be made and you feel that the prognosis is necessary to make that decision you can ask the patient if there is someone else that should receive this information in order for them to help the patient make decisions. However, if there is no urgent need for the patient to know their prognosis it can be left for another visit.

1. Momen nC, Barclay SI. Addressing ‘the elephant on the table': barriers to end of life care conversations in heart failure    – a literature review and narrative synthesis. Curr opin Support Palliat Care. Dec;5(4):312-6.

2. Fallowfield L, Lipkin M, Hall A. Teaching senior oncologists communication skills: results from phase I of a comprehensive longitudinal program in the United Kingdom. J Clin oncol. 1998 May;16(5):1961-8.

 3. Wright AA, Zhang B, Ray A, et al. Associations between end-of-life discussions, patient mental health, medical care        near death, and caregiver bereavement adjustment. JAMA. 2008;300:1665-1673.

 4.  Back A, Arnold R, Tulsky J. Mastering Communication with Seriously Ill  Patients: Balancing Honesty with Empathy  and Hope. Cambridge University Press, new York, new York, 2009






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