Conversations about Serious Illness

"What if something happens?"

"What if this happens?"

"This is happening."

Advance Care Planning is a process of reflection and communication. It is a time for patients to reflect on their values and wishes, and to let their loved ones know what kind of health and personal care they would want in the future if they were unable to speak for themselves.1

  • Think, Learn, Choose, Talk, Record (5 steps)
  • Personal Directive
  • Choosing a Substitute Decision Maker/Delegate

1. Adapted from Advance Care Planning in Canada (http://www.advancecareplanning.ca/what-is-advance-care-planning/). Accessed January 31, 2017.

5 Steps of Advance Care Planning for Patients

 

Think

What are the patient's values, wishes, beliefs, and understanding about their care and specific medical procedures?

 

Learn

Encourage the patient to learn about different medical procedures and what they can and cannot do.

 

Decide

Ask the patient who their substitute decision maker/delegate should be. This person should be willing and able to speak for the patient if the patient cannot speak for him or herself.

 

Talk

Encourage the patient to discuss their wishes with their substitute decision maker/delegate, their loved ones, and their physician.

 

Record

Suggest that it is a good idea for the patient to write down or make a recording of their wishes.

Five Steps of Advance Care Planning adapted from Advanced Care Planning in Canada (http://www.advancecareplanning.ca/what-is-advance-care-planning/). Accessed January 31, 2017.

Choosing a Substitute Decision Maker/Delegate

Confirm the patient's choice of substitute decision maker (SDM) or delegate. Make sure the SDM/delegate is on the same page with respect to the patient’s wishes and the medical orders. If the patient has not yet chosen a SDM/delegate, ask:

  • “If you are unable to speak for yourself about medical decisions, who do you want to speak for you?”

Explore if they have discussed their wishes with their family, SDM/delegate, and health care providers.

  • “Have you talked to {call the SDM/delegate by name or “your family”} about your wishes and these goals?”

The process of selecting a SDM/delegate is governed by Nova Scotia's Personal Directives Act. An overview of the process is included in the Speak Up Nova Scotia Workbook, and more information can be found at: https://novascotia.ca/just/pda/

Adapted from Just Ask: A Conversation Guide for Goals of Care Discussions (http://www.advancecareplanning.ca/wp-content/uploads/2015/09/acp_just_ask_booklet-rev-july20_final-web2.pdf). Accessed February 2, 2017.

Personal Directive and the Health Care Provider

Health care providers must:

  • before seeking a health care decision from a substitute decision maker (SDM) or other delegate for a person who lacks capacity, ask if there is a personal directive for the person, request a copy, and include it in the patient's health record
  • follow a SDM/delegate’s instructions
  • follow clear instructions in a personal directive
  • If there is no personal directive, follow the instructions of the SDM/delegate

Adapted from Personal Directives in Nova Scotia - Information for Health Care Providers (https://novascotia.ca/just/pda/_docs/PDA_Web_Info_Health%20Care%20providers.pdf). Accessed February 2, 2017.

Video: Unsuccessful Conversation

About this video:

In this video Dr. Justin Sanders models a bad conversation using the Serious Illness Conversation Guide. He talks more than half the time, seems to fear silence and fill empty space in the conversation, gives premature reassurance, provides facts in response to strong emotion, and focuses on medical procedures. A redeeming aspect of this conversation is that Dr. Sanders does follow/read the questions on the guide. This is recommended for clinicians new to having these structured conversations.

Note: This conversation is a role-play exercise, and an actor plays the patient.

This video was developed by Ariadne Labs.

Video: Successful Conversation

About this video:

In this video, Dr. Jo Paladino demonstrates having a serious illness conversation with a COPD patient. This video was developed to:

  • Demonstrate a level of clinician skill that feels achievable to non-palliative care specialists
  • Provide an example conversation with a patient facing a chronic condition
  • Be a shorter demonstration (12 minutes vs. 20 minutes)

Note: This conversation is a role-play exercise using a standardized patient.

This video was developed by Ariadne Labs.

Key Points to Remember when Starting the Conversation

  • Be sure to ask permission before initiating the conversation.
  • Use the combined approach: hope for the best, but prepare for the worst.
  • Emphasize that the goal of the conversation is to determine how best to benefit the patient and their family.
  • Assure the patient that no decisions need to be made today.

Resources for Advance Care Planning

For Patients

For Health Care Providers