The Canadian Researchers at the End of Life Network (CARENET) is a group of health care professionals from across the country that collaborate with each other to understand and improve palliative and end-of-life care.

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JUST ASK:

A Conversation Guide for Goals of Care Discussions

www.advancecareplanning.ca

This Guide provides a framework including 'scripts' to assist you with engaging patients and/or their substitute decision makers (in the case of an incapacitated patient) in goals of care (GOC) conversations  that lead to medical orders for the use or non-use of life-sustaining treatments.

This communication process is different from Advance Care Planning (ACP), which is a communication process wherein people plan for a time when they cannot make decisions for themselves. ACP includes reflection on and determination of a person's values and wishes or preferences for care at the end of life. These expressions are generally made outside of the clinical context and are not to be misconstrued as medical decisions. A medical decision requires consideration as to whether the wishes and preferences are clinically indicated.

Goals of care conversations consist of putting prior ACP conversations about wishes into the current clinical context, resulting in medical orders for the use or non-use of life-sustaining treatments. Many patients in the health care system have not engaged in ACP activities. However, you will still need to engage them in making medical treatment decisions when they are seriously ill. We caution you against rigidly reading these scripts or using this tool as a checklist. It is intended to mark the path that you must cover with the patient and support the conversation. The conversation must still be natural and engaging and does not necessarily need to follow the same order as the ideas presented below.

Not all patients will require the same conversation. It depends on their risk of death. The figure below indicates that you are trying to categorize whether the patient is at low-risk of mortality (in which case a detailed GOC is not warranted), intermediate or uncertain risk (detailed conversation warranted) or imminently dying (conversation is focused on preferences or needs related to dying rather than medical treatment focused).

 

The information below is intended to help you engage patients and substitute decision makers in goals of care conversations. We'd appreciate any feedback you might have to improve this guide. Please use the comments sections below to provide your feedback.

Click a header to hide/show its contents:

Pre-Conversation Considerations

  • Before you begin this conversation with the patient, you may want to check with them to see if they want family or other people to be a part of these discussions.
  • If applicable, consult with other members of the health care team involved in the patient's care, to get a consensus of capacity of the patient to provide informed consent; the patient's prognosis, planned treatments, and other related issues.
  • Clarify if the patient has appointed a substitute decision maker and encourage that person/those persons to attend especially if there are concerns about capacity.
  • Review the hospital chart and talk to staff to see if there is an advance care plan or if wishes are previously documented or verbalized.

For patients in Category #2 and some patients in Category #3, consider the following pathway:

  • Explain the need to address their goals of care and assess prior conversations/documentation about their health care wishes.

    "We try our best to keep patients in good health, but understand that there eventually comes a time when patients will start to get sicker despite our best efforts. Have you talked to anyone about your wishes for health care when you get really sick or are at the end of your life? And/or "Have you put anything in writing about your wishes?"

    • If yes, probe about the content of discussions and/or documents.
    • If no, suggest that planning ahead can help patients be assured that their wishes will be honoured and reduce stress for their loved ones if they are asked to help make decisions on the patient's behalf at a time of serious illness. Involve other disciplines such as social work, spiritual care, and nursing to support the family through the communication process. Ensure that you are aware of and follow consent and substitute decision-making laws in your province/ territory. These can be found at www.advancecareplanning.ca - click on "Resources in your Province/Territory" under Quick Links.

TIPS

  • A good way to normalize a difficult topic is to speak in the third person framing the issues as universal or general, not specific to the patient.

    Don't say: "If you get sicker, you are going to need to decide what you want." Say: "When people with serious illnesses get worse, they face decisions about their care. It is a lot less stressful on the patient and their family if conversations about their wishes happen before they get really sick."

  • Depending on the clinical condition and whether you have the luxury of time, you may choose to seek permission to have the conversation now since it's a big conversation and the patient may not be in a good space for it. Furthermore, asking for permission is a good relationship building strategy and something that can help put clinician and patient on more equal footing.

    Say, Is it OK if we talk now about what we might do if you were to get really sick? Or sicker?

    If they say no, explore reasons behind their reticence to engage in this important conversation and try and resolve concerns or barriers. In the end, if the patient is not ready to have the conversation, make a concrete follow-up plan to revisit the issue in the future.

    Say, Can I ask the social worker (or family member) to speak to you about this and I will come back in a few days to discuss it with you again?

 

Illness Understanding

  • Assess the patient's understanding of their illness. Check for an understanding of their diagnosis and prognosis.

    • "Tell me about your illness and how things have been going for you in the past few months?"

      OR

    • "What do you understand about your illness?"
  • Assess the patient/family's interest in knowing more about prognosis.

    • "Are you the kind of person who likes to know a lot of information, particularly about the impact of your illness on your quality of life or how long you have to live or how your disease will progress?"

      OR

    • "Some people like to know a lot of information about their illness, what their quality of life will be like in the future, and how long they have to live. Other people prefer not to be told a lot of information, and ask us to speak to their family members about these things. I'm OK with either approach, but I would like to know which one you prefer."

      If they want information, check who they may want present for this conversation and proceed to additional questions found in "Approach to Disclosing Prognosis". If no, go to next question.

 

Initiating the Conversation

In developing this guide, we assume you are dealing with a competent patient. If the patient is incapable, the same approach can be used with the substitute decision maker instead of the patient

For patients in Category #1, conduct a cursory scan of issues that might affect goals of care. For example, after assessing severity of current illness and pre-illness function and quality of life, you may say something like "There is no medical reason why we would not offer you the full extent and types of treatment at our disposal. However, given your own values, should we be aware of limits that you would provide on the types or extent of care that you would like to receive?"

For patients in Category #3, the focus is on assessing illness understanding, communicating prognosis, and assessing patient/family supportive needs. A good opening line is "What have the previous doctors told you about what has been going on?"

Depending on the response to the above question, parts of the following pathway will be needed to move to plans for end-of-life care.

 

Elicit Values and Preferences

  • Probe about values and preferences. If they have done ACP well, they may be clear on their values and able to articulate preferences. If not, they may need some assistance and time with this task. Check if the patient needs more information about the various medical options at the end of life (e.g. What it means to be resuscitated or go to the ICU):

    • "There are lots of different ways we can treat patients. Knowing more about you will help us make sure you are getting the treatments that are RIGHT for you. What is important to you when considering health care decisions?" and/or

    • "What are your hopes or personal goals as your illness progresses?"

      OR

    • "We want to make treatment decisions that honor what's important to you. What sort of quality of life would you find acceptable, and what would you find unacceptable?"

      OR

    • "What is important to you as you think about the future?"

TIPS

  • Use hesitant, hypothetical language to broach this issue sensitively if the patient doesn't seem to want to address it directly.

    Say: "Suppose (say slowly).... your condition were to worsen, what concerns would you have OR what medical treatments would you want or not want?"

  • Following the clarification of their values and preferences, using a shared-decision making approach, determine the overall goals of care:
    • "Given what you've told me and what I know about your illness it sounds like [insert what you've heard here, e.g. trying to "prolong life" or "focusing on comfort" or
      a mixture of..." is important to you now. Have I understood your goals of care correctly?"
  • Once there is agreement on the overall goals of care, you need to reduce this general statement about goals to specific orders for medical treatments to be used or not used in the context of serious illness. You do this by proposing what treatments may work or should not be considered and seeking affirmation from the patient that this is acceptable.

    • "Based on what you said, it seems like {propose treatments that you do or do not recommend} would be in your best interest. How do you feel about that?"

      OR

    • "Based on what you've said, it seems like cardiac resuscitation or using breathing machines to prolong your life are not going to benefit you in your situation. We will still do all possible to keep you comfortable and treat reversible illness but in the event your heart and lungs stop, these life-sustaining treatments will not be used."

      OR

    • "Given what you have told me about yourself and what I know of your medical condition, I do not think that resuscitative measures are right for you."

    Consult your local institution policies and procedures on how exactly to document this conversation and the resulting medical orders.

    Note: Trying to prolong life does not equate to offering CPR. When CPR is very unlikely to meet the patient's goals, discuss the other interventions that may be helpful, e.g., hospitalization, antibiotics, chemotherapy.

TIPS

  • Some patients or families may not cope with the stress of medical decision-making during serious illness. If in the response to your open-ended questions you perceive maladaptive coping, consider being more directive and use declarative sentences to explain prognosis and appropriate treatments, such as: "The cancer has spread despite our best treatments and I would like to involve health care providers (e.g. home care nurses, palliative care team members) that can help to provide the support you need and to talk through any decisions that need to be made."
  • While most patients (and families) prefer a shared-decision making model, some will prefer to make the decision themselves (autonomous or active decision-makers). You can still make it easier on them by legitimizing the difficult decision by saying something like: "I respect that you want to make the decisions yourself. My role is to ensure you are aware of the risks and benefits of various treatments. My hope is to continue to share this information with you. From my experience and clinical training, most people in your situation would benefit from {say what you think is the best treatment option}, but think about it and we can talk again." Be careful not to use "what do you want us to do" because that places decisional responsibility on the patients (or family). This may worsen their stress and anxiety if they want to play a passive or shared decision making role.
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