Fast Fact and Concept #038: Discussing Hospice

2nd Edition

Author(s): Charles F. von Gunten, MD PhD FACP

Hospice discussions with seriously ill patients should always take place in the context of the larger goals of care, using a step-wise approach.

1. Establish the setting

Ensure comfort and privacy; sit down next to the patient. Ask if family members or others should be present. Introduce the subject: I’d like to talk with you about our overall goals for your care.

2. What does the patient understand?

Ask an open-ended question to elicit patient understanding about their current health situation. It is important to get the patient talking--if the doctor is doing all the talking, it is unlikely that the rest of the conversation will go well. Consider starting with phrases such as: What do you understand about your current health situation? or What have the doctors told you about your condition?

If the patient does not know/appreciate their current status this is time to review that information. An informed decision about hospice is only possible if the patient has a clear understanding of their illness and prognosis.

3. What does the patient expect?

Next, ask the patient to consider the future. What do you expect in the future? or What goals do you have for the time you have left—what is important to you? This step allows you to listen while the patient describes a real or imagined future. Most patients with advanced disease use this opening to voice their thoughts about dying—typically mentioning comfort, family, and home, as their goals of care. If there is a sharp discontinuity between what you expect and what the patient expects, this is the time to clarify. Listen carefully to the patient’s responses; most patients have thought a lot about dying, they only need permission to talk about what they have been thinking. Setting up the conversation in this way permits the physician to respond with clarifying and confirming comments such as: So what you’re saying is, you want to be as independent as possible and stay out of the hospital. or What you’ve said is, you don’t want to be a burden on your family.

4. Discuss Hospice Care

Use language that the patient will understand, give information in small pieces. Never say, “There’s nothing more we can do”. “Nothing” is euphemistic and easily misinterpreted; to a patient “nothing” means abandonment. Summarize the patient’s goals as part of your introducing a discussion of hospice care; You’ve told me you want to be as independent and comfortable as possible. Hospice care is the best way I know to help you achieve those goals. Listen carefully to the response; patients often have a distorted view of hospice care, others have never heard the term. Ask what the term means to them; patients frequently describe hospice as a place to go to die or what you do when you give up. Probe for previous experiences or how they developed their point of view. Respond by describing hospice as, a program that helps the patient and family achieve the goals you’ve just described; it’s a team of people that help meet the patient’s and family’s physical, psychological, social and spiritual needs. Offer to ask someone from the hospice program to meet with them to give information.

Offer your recommendation, From what you’ve told me, I would recommend that hospice care begin so that I can do the best possible job in meeting the goals we discussed today or I think it would be best if we got the hospice involved or I always ask the hospice to get involved for my patients at this stage of their illness. Reinforce that entering hospice care does not mean that the patient can never return to the office or hospital for care, that the decision is revocable, and that you will continue to be their physician (see future Fast Fact on Hospice Regulations).

5. Respond to emotions

Strong emotions are common when discussing death. Typically the emotional response is brief. The most profound initial response a physician can make may be silence, providing a reassuring touch, and offering facial tissues. (see FastFact #29 Responding to emotions).

6. Establish a plan

Summarize the plan, I’ll ask the hospice to come by to give information, then you and I can discuss it.

Reference

von Gunten CF. Discussing Hospice Care. Journal of Clinical Oncology 2002;20:1419-1424

Fast Facts were edited by David Weissman MD, Palliative Care Center, Medical College of Wisconsin until January 2007.  For comments/questions write to the current editor, Drew Rosielle MD: drosiell@mcw.edu. The complete set of Fast Facts is available at EPERC: www.eperc.mcw.edu.

Copyright/Referencing Information : Users are free to download and distribute Fast Facts for educational purposes only. Citation for referencing: von Gunten CF, Ferris F, and Weissman DE. Fast Fact and Concept #38: Discussing Hospice; 2nd Edition. July 2005. End-of-Life Palliative Education Resource Center www.eperc.mcw.edu.

Disclaimer: Fast Facts provide educational information, this information is not medical advice. Health care providers should exercise their own independent clinical judgment. Some Fast Fact information cites the use of a product in dosage, for an indication, or in a manner other than that recommended in the product labeling. Accordingly, the official prescribing information should be consulted before any such product is used.

Creation Date: 4/2001; 2nd Edition. July 2005.

Purpose: Self-Study Guide

Audience(s)

ACGME Competencies: Interpersonal and Communication Skills, Patient Care

Keyword(s): communication