Approaches to Goals of Care Conversations: A Guide for Healthcare Providers
Goals of care conversations ensure a person living with chronic kidney disease or their substitute decision maker understands the serious nature of their illness, while helping healthcare providers to understand the patient’s values and goals they have for their care. The discussion is focused on the current clinical context, and ensures the individual is better supported throughout their care journey.
Adapted from Just Ask: A Conversation Guide for Goals of Care Discussions (Speak Up, 2017), this resource includes conversation starters to help healthcare providers engage individuals in goals of care conversations.
Step 1: Start the Conversation
Goals of care (GOC) conversations should happen in a private and comfortable space and therefore may need to be scheduled well in advance. It is important to confirm the patient’s preference when it comes to including family or friends in the conversation. If the patient is capable, explore whether they have confirmed a substitute decision maker (SDM). If the patient is not comfortable with their automatic SDM, discuss preparing a power of attorney for personal care.
If the patient is incapable, the conversation must take place with their SDM, as the SDM holds responsibility for interpreting the patient’s previously expressed wishes, values and beliefs.
Begin the conversation by establishing rapport with the patient, and if applicable, SDM.
- Shake hands and introduce yourself and other healthcare providers present for the discussion.
- Convey empathy and encourage responses by using eye contact, touch and silence when appropriate, and sitting at the individual’s level.
- Ask permission to begin the conversation:
If it is okay with you, I am hoping we can talk about where things are with your illness and where they might be going.
Put the individual at ease with simple, open-ended questions about their family, living situation and adaptation to dialysis (if applicable). Allow the individual to express fear and frustration and acknowledge their emotional distress. Ask specifically about the patient’s symptoms including: appetite, energy, itch, pain, weight, sleep.
Step 2: Confirm Illness Understanding
If the patient is interested in knowing more about their current healthcare condition, confirm their understanding of the serious nature of the illness by asking:
How much do you know about your kidney disease and what it means for your health and quality of life?
Assess the patient’s interest in knowing more about their prognosis:
What, if any, information about what lies ahead would you like me to share?
Depending on the risk of mortality (high, medium or low), not all individuals will require the same conversation.
- Speak in the third person and provide estimates of life expectancy using comments that are not specific to the patient.
- Normalize the uncertainty of prognosis rather than providing precise predictions of life expectancy.
We cannot fully predict what is ahead and there is a good amount of uncertainty, but based on your health status and the best available information, I would say about…. It could be longer or shorter, though.
Step 3: Elicit Values and Define Goals
Ask the patient about their past experiences, hopes, values and priorities. Discuss their perception of quality of life and what they consider important moving forward:
What are your hopes or personal goals as the illness progresses?
Consider reviewing goals related to:
- family and friends, relationships and intimacy
- degree of dependence on others
- place of residence (such as retirement home, long-term care)
- travelling, hobbies, interests, work and educational aims
Provide treatment options, with the aim of determining which options are likely to meet these goals of care:
Based on what you said, it seems like [propose treatments that you recommend] would be in your best interest. How do you feel about that?
Views on code status may naturally arise during goals of care conversations. If appropriate, discuss the patient’s views on resuscitation and aggressive treatment (such as cardiac compressions, intubation, prolonged ventilation).
Note that any treatment decisions made (including withholding or withdrawing treatment) during this conversation require the patient’s (or SDM’s) consent.
Step 4: Allow for Questions
Provide the individual with the opportunity to ask questions and resolve outstanding concerns:
What are some of the questions you have about your goals of care?
If the conversation is not going well at any time, try the following approach to help get it back on track:
- Explain your motives
- Clarify your understanding of the patient’s values
- Reassess the individual’s information needs
- Consult other multidisciplinary healthcare providers
Step 5: Document the Conversation
Close the conversation and summarize what you have heard. It is important to emphasize and repeat what the individual has told you, so they know they have been heard.
Document details, including:
- the name of the SDM
- illness understanding
- other key issues raised during the conversation
Use these goals of care to inform the development of a treatment plan.
- Record the patient’s views on medications, tests, resuscitation, intensive care and preferred location of death.
- If the patient makes any treatment decisions relevant to their current condition (that is, provides consent), incorporate these decisions into their treatment plan.
- Give the individual a copy of the treatment plan.
Affirm your commitment to the patient:
We are in this together.
The team is here to support you and your family.
Step 6: Revisit the Conversation
Revisit this discussion regularly, especially if the patient’s health status changes. Update the goals of care and treatment plan accordingly.
Sources
Mandel EI, Bernacki, RE, Block SD. Serious illness conversations in ESRD. Clin J Am Soc Nephrol. 2017;12:854-63.
Speak Up Ontario. Just ask: a conversation guide for goals of care discussions. Canadian Researchers at the End of Life Network. [undated; cited [2017 September].