This pandemic has raised an opportunity for doctors and their patients to start the worst-case conversation to ensure patients are empowered to make good decisions for themselves, writes Dr Julia Ambler, palliative care specialist, Risk Prevention Faculty, Medical Protection.
We all know the importance of forward planning. However, the immense challenges of a global pandemic help to highlight the need for planning ahead. In a time of uncertainty, knowing your patient’s thoughts and wishes is very comforting.
What conversation needs to take place?
While the efforts of healthcare professionals are focused on containing COVID-19, every one of us should be considering the possibility that we could become seriously ill with the virus, very quickly. While we know that most people recover or are not seriously affected, we cannot predict the future. In the worst-case scenario, who would you want to make decisions on your behalf and what would those decisions look like?
This is even more important for patients with advanced illness, who if given the choice, may choose to stay home with good symptom control rather than be admitted and isolated in hospital where they may face aggressive procedures and die a lonely death.
"Advance care planning is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. The goal of advance care planning is to help ensure that people receive medical care that is consistent with their values, goals and preferences during serious and chronic illness." (1)
What are the barriers?
Few physicians are trained to talk to patients about advance care planning and many don’t recognise the need to have the conversation until it is too late. We just don’t know how and fear we might depress the patient or take hope away. Often families put inadvertent pressure on their loved one to remain positive – precluding any discussion about wishes and fears. And the truth is, in many parts of the world, there is little financial incentive for physicians to have these long and tricky conversations compared to active intervention.
The good news
The evidence shows that most patients welcome their doctor raising advance care planning. (2,3) Advance care planning helps health care workers provide care that aligns with the patient’s wishes (4) and improves patient and family satisfaction. Stress and anxiety are also considerably reduced. (5) Advance care planning also has economic benefit to the healthcare system. (6)
How to have the conversation
- Make it part of the routine
Just as we ask about smoking, we could ask every patient, “Have you ever thought about what you would want for yourself if diagnosed with a serious illness? Do you know who you would want to make decisions on your behalf if you couldn’t make them for yourself?”
If it were routine, it would make it less awkward for the physician and possibly more acceptable to the patient – this is something we ask all our patients. And of course, practice makes perfect!
- Explain the purpose
Explain that advance care planning is not about death or dying but rather about control, autonomy and ensuring the right person is making decisions when the patient cannot decide for themselves. Palliative care is not about prolonging life or hastening death but rather about ensuring the care is in line with the patient’s wishes, the prevention of suffering and improving quality of life.
- Focus on the patient and process, not the outcome
While advance care planning is urgent in the face of a pandemic, it is still a dynamic process that will be ongoing. Decisions can be made, changed and updated as the situation or conditions change. Understanding this can also relieve stress for the patient and family; they are invited to be part of a conversation in which their thoughts and opinions matter.
- Use empathy and listen more than you speak
The whole process is easier when your patient trusts you and this is when they believe that you care. They will believe that you care when they feel truly heard, that is you have understood their emotion and the content of what has been said. Ask the patient what they are most worried about. What keeps them awake at night? “Many people in your position are worrying about what COVID-19 will mean for them. Have you had any thoughts?”
An empathic statement could be, “From what you have told me, I understand that you are afraid of being alone and would choose to have palliative care at home if you became ill with COVID-19.”
- Have prepared and practised phrases
Clarity of thought is elusive when we are anxious. Having prepared and practised phrases can prevent the physician from getting stuck and not knowing what to say.
Be honest and share your concerns with the patient and family.
“Mrs X, I am really worried about your chest and what that could mean for you if you were to become ill with COVID-19. Do you have any thoughts?”
“My real fear with your underlying illness, is that if you were ventilated because of COVID-19, we might not be able to ever get you off the machines. Could we talk about it?”
This pandemic has raised an opportunity for doctors and their patients to start the conversation to ensure patients are empowered to make good decisions for themselves. Evidence shows that patients appreciate the conversation and the benefits include less futile interventions, increased family and patient satisfaction with reduced anxiety for all involved. Although health care workers are afraid to have these conversations there are numerous resources available online and there has never been a better time to learn.
- Sudore RL, Lum HD, You JJ, Hanson LC, Meier DE, Pantilat SZ, Matlock DD, Rietjens JAC, Korfage IJ, Ritchie CS, Kutner JS, Teno JM, Thomas J, McMahan RD, Heyland DK, Defining Advance Care Planning for Adults: A Consensus Definition From a Multidisciplinary Delphi Panel, Journal of Pain and Symptom Management. 2017 May;53(5):821-832
- Davison SN. End-of-life care preferences and needs: Perceptions of patients with chronic kidney disease. Clin J Am Soc Nephrol. 2010;5:195–204.
- Tierney WM, Dexter PR, Gramelspacher GP, et al. The effect of discussions about advance directives on patients' satisfaction with primary care. J Gen Intern Med. 2001;16:32–40.
- Brinkman-Stoppelenburg A, Rietjens JA, van der Heide A. The effects of advance care planning on end-of-life care: a systematic review. Palliat Med 2014; 28: 1000–1025.
- Detering, KM, Hancock, AD, Reade, MC, Silvester, W 2010, ‘The impact of advance care planning on end of life care in elderly patients: randomised controlled trial’, British Medical Journal, 340: c1345
- Bond WF, Kim M, Franciskovich CM, et al. Advance Care Planning in an Accountable Care Organization Is Associated with Increased Advanced Directive Documentation and Decreased Costs. J Palliat Med. 2018;21(4):489–502. doi:10.1089/jpm.2017.0566