Conversations about Serious Illness

"What if something happens?"

"What if this happens?"

"This is happening."


It is necessary to talk with your patient about their illness, their goals and wishes, and planning for the future. This is an important part of the care you provide for your patients.

It is best to start talking about this when patients are doing okay. When their illness is serious but stable, it is a good time to talk about what is ahead, and to do some planning for the future. Patients who think through what is important to them and what their wishes are often feel less anxious, more at peace, and more in control of their situation.

  • Discussions within context of illness
  • Understanding prognosis, goals, fears, values, "trade-offs", what is important (Serious Illness Conversation Guide)

Video: How to Talk to Patients with a Serious Illness

It is encouraged that health care providers start the conversation early in the patient's disease trajectory, on an iterative basis, to ensure that care is in accordance with the wishes of the patient as their disease progresses.

About this video

Practicing surgeon Atul Gawande emphasizes the importance of asking patients questions about their hopes and fears, rather than pressing them to make hard decisions. In this presentation, Gawande discusses the four important parts of talking with terminally ill patients about their end-of-life care:

  1. Does the patient know about their prognosis?
  2. What are their hopes and fears about what is to come?
  3. What are their goals? What would they like to do as time runs short?
  4. What are the trade-offs they are willing to make? How much suffering are they willing to go through for the sake of the possibility of added time?

This excerpt was taken from a program titled "How to Live When You Have to Die," featuring Atul Gawande. It was recorded in collaboration with the New Yorker Festival, on October 2, 2010.

Serious Illness Conversation Guide

The Serious Illness Conversation Guide helps facilitate appropriate conversations between clinicians and seriously ill patients and their families. Drawn from best practices in palliative care, the intervention provides guidance for clinicians to initiate these difficult conversations in the right way, at the right time. Patients then have the opportunity to make informed choices that reflect their values, reduce suffering, enhance family well-being, and improve quality of life.1

 

Set up

  • Thinking in advance
  • Is this okay?
  • Combined approach
  • Benefit for patient/family
  • No decisions today

 

Guide

Understanding What is your understanding now of where you are with your illness?
Information Preferences How much information about what is likely to be ahead with your illness would you like from me? For example: Some patients like to know about time, others like to know what to expect, others like to know both.
Prognosis* Share the prognosis, tailored to the patient's information preferences.
Goals If your health situation worsens, what are your most important goals?
Fears / Worries What are your biggest fears and worries about the future with your health?
Function What abilities are so critical to your life that you can't imagine living without them?
Trade-offs If you become sicker, how much are you willing to go through for the possibility of gaining more time?
Family How much does your family know about your priorities and wishes? Suggest bringing family and/or a health care agent to the next visit to discuss together.

* Remember to assess what the patient knows/does not know about their prognosis, to get a better sense of what the patient understands about their illness. Their understanding will provide you with direction on how to carry out the conversation about serious illness.

 

Summarize and confirm

Close the conversation with:

  • Questions
  • Review
  • Summary
  • Documentation

 

Act

  • Affirm commitment
  • Make recommendations to patient
  • Document conversation
  • Provide patient with Family Communication Guide

1. © 2015, Ariadne Labs: A Joint Center for Health Systems Innovation (www.ariadnelabs.org) and Dana-Farber Cancer Institute. Licensed under the Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License, http://creativecommons.org/licenses/by-nc-sa/4.0/ Revised 5/22/15

Initiating Goals of Care Discussions

The following scenario is explored using the Serious Illness Conversation Guide.

Click on each tab to learn more about the types of questions you may ask during your Goals of Care discussion with the patient.

Inoperable Pancreatic Cancer

Darren Enz is a man in his mid-thirties with a wife and son. They live in the community of Barrington Passage. Darren fishes in season, but doesn’t have his own boat. Winter work is hard to come by, but he has had some good jobs in that regard, construction and the like. Darren and Sue built on a piece of land close to where he grew up, and where his mother still lives. With his father gone, he feels a big responsibility to her too.

Darren has always been strong and healthy. He knows his way around the woods and water in the county. “Long as there’s no fog, I can navigate anything.”

Due to symptoms of fatigue, weight loss, etc., Darren has gone to see his family doctor and has had some investigations done. Darren receives his results and finds out that he is diagnosed with pancreatic cancer.

Darren has seen a surgeon and been told that his cancer is inoperable. Chemotherapy and radiation options have been exhausted. No further treatment is available to Darren at this time.

Understanding and Information Preferences

Questions:

  1. What is your understanding now of where you are with your illness?
  2. How do you see your health at the moment?
  3. Where do you see things going with your illness?
  4. Are there things that particularly worry you?
  5. How much information about what is likely to be ahead with your illness would you like from me?

Sharing the Prognosis

Patient-centered approach:

  • Tailor the information given to the patient's needs and wishes
  • Acknowledge uncertainty
  • Use ranges, not specifics (e.g., time)
  • Ask - Tell - Ask
  • Acknowledge and respond to emotions

Exploring Goals, Fears, and Worries

Question:

  1. If your health situation worsens, what are your most important goals?

Other ways to ask the question…

  1. Please tell me what gives your life purpose or meaning.
  2. What makes you happy in your life right now?
  3. What are your biggest fears and worries about the future with your health?

Exploring Function

Question:

  1. What abilities are so critical to your life that you can’t imagine living without them?

Other questions you might ask…

  1. What things must you be able to do to have quality of life?
  2. If you couldn't do these things, how would you feel?

Exploring Trade-offs

Question:

  1. If you become sicker, how much are you willing to go through for the possibility of gaining more time?

Other questions you might ask…

  1. Are there religious, spiritual, or cultural beliefs that are important to you? How do your beliefs influence your health care wishes?
  2. Who or what helps you get through difficult times in your life?

Sharing with Family Members

Question:

  1. How much does your family know about your priorities and wishes?
    • Patients vary in how involved they want their family members to be and how much they want their own values, as opposed to those of their family members, to determine their care. By exploring these issues with the patient, you can help them develop a plan for engaging their family members in these critical discussions.

Other ways to ask the question…

  1. If your family has strong wishes about your care that are different from yours, how would you like us to decide on your care?
  2. I know these issues are very difficult to talk about because you care so deeply for your family, but involving them in decisions helps them prepare and cope.
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Why Conversations about Serious Illness are Important

Talking about the future won’t change your patient's ongoing care

Talking about the future won’t change the plans you have made so far about the patient's treatment, unless, of course, they want to. Always strive to provide the best possible care for your patient.

Suggest that the patient bring other people to their next appointment

Ask your patient to bring the person who is their substitute decision maker/delegate or other family members to their next visit so they can be a part of the conversation. They can also bring their nurse practitioner, social worker, or chaplain.

Understand that the patient's wishes may change over time

This is the beginning of an ongoing conversation. Your patient may have other questions or concerns in the future. Continue to be there for your patient as needed, supporting them and answering their questions so that they can make informed decisions.

© 2015, Ariadne Labs: A Joint Center for Health Systems Innovation (www.ariadnelabs.org) and Dana-Farber Cancer Institute. Licensed under the Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License, https://creativecommons.org/licenses/by-nc-sa/4.0/ Revised 10/30/15

Resources for Goals of Care

For Patients

For Health Care Providers