Dr Margie Venter, a palliative care specialist and oncologist, raised some interesting points about serious illness conversations, particularly the idea that advanced care planning discussions need to be done with everyone. This includes initiating the conversation at diagnosis and not just in the last stages of terminal disease, with the aim to assess goals and values more than just treatment options.
Many barriers exist to having these discussions. From the cancer patient side, there may be denial (a “don’t ask, don’t tell” attitude), they may be uninformed about the prognosis and not realise the need to make decisions, or they may be protecting their family (don’t want the family to be upset). From the clinician’s perspective, knowledge, skills, and attitude all play a part, as well as prognostic uncertainty and expectations of medical interventions.
Timing is also crucial – often the conversation is prompted by a crisis and would have been much easier if it had been explored earlier. The system also presents challenges: time, accountability and feedback (whose responsibility is it in the team?), and resources (often the people who are good at this sort of communication are not available).
An adaptation of the Serious Illness Conversation Guide
Oncologist, Dr Venter, outlined her adaptation of the conversation format as suggested in the Serious Illness Conversation Guide (available online), stressing the importance of setting it up, e.g. “I like to talk to all my patients about …” and asking the patient’s permission.
- Then one assesses their understanding of their illness and their preferences (What have doctors told you? What information would be helpful to you about what lies ahead?).
- Depending on their preferences, the prognosis is shared as a range, combining the best case and worst-case scenarios. Dr Venter feels that patients want their doctors’ best educated guess about how much time they have left. It is also helpful to address uncertainty by informing patients about what might happen suddenly.
- Then Dr Venter suggests, “Shut up.” Allow silence and expect emotions to arise. Encourage patients to name their emotions.
- Explore goals and fears: What are your most important goals if your health worsens? What are your biggest fears or worries? The point is not to try to fix everything but to address fears about pain, shortness of breath, etc.
- Explore sources of strength. Talk about family and faith.
- Explore function: How important is the ability to be mobile?
- Explore their appetite for intervention: If you become sicker, how much are you willing to go through to gain more time?
- Assess family involvement: How much does the family already know about your illness? Suggest bringing family members to the next consultation.
- In closing the conversation, summarise briefly what has emerged, make recommendations about the next step in treatment, and affirm your commitment: “I will do whatever I can to help.”
Dr Venter referred oncologists and practitioners interested in end-of-life care to the websites vitaltalk.org and thecarenet.ca.
Presentation at the 5th ICON Conference, held at Century City Conference Centre, Cape Town on 18 August 2018.