Before the meeting
- Confirm the medical facts. Coordinate with other providers so you are all delivering the same message about prognosis.
- Set the stage. Choose a comfortable place with ample time for discussion. Ideally all decision-makers are present.
With the patient (and family)
- “What is your understanding of your condition?”
Find out what the patient thinks about the severity of their condition and the likely outcome.
- “Tell me a bit about your goals. What’s important to you to do?”
These can be treatment goals, but assessing life goals (to complete a project, go to a family event, spend more time in the garden…) will give you a strong reference point in this shared decision-making discussion. If the goals are unrealistic, this might be a time to reframe expectations: “I wish I could say *** is likely, but I’m not sure that’s realistic. What you might consider is ***.”
- “Tell me about your days at home. What are the challenges?”
For instance, are they having trouble with ADLs, such as getting dressed or bathing? Which symptoms are especially bothersome? How are things emotionally? Socially, in the family?
- “What if you could have help with these things?”
Hospice can provide
- home visits by a nurse to manage pain and other difficult symptoms
- a home health aide to give baths
- a social worker to talk to about feelings or community support programs
- a volunteer to give periodic respite to a family caregiver
- telephone support 24/7
- access to a nondenominational chaplain to discuss spiritual concerns or distress
- “What have you heard about hospice?”
At this point, the patient or family member may glaze over, as they often do once they hear the word “hospice.” But at least they have heard the benefits first. Respond to their emotions and address any misconceptions they may have.
- Make hospice referral when they are ready.