We read with interest a recent Opinion piece by Derek Willis et al, who offer their perspectives on advance care planning. We too recognise that the coronavirus pandemic has highlighted the need for people to consider the treatments they might wish to receive or refuse in the future. However, we urge caution against any suggestion that the success of advance care planning depends on the medical profession’s management of it.
As Rachel Cooke asked in the Guardian recently, when it comes to us facing up to death, “could this be the time for change?” She interviewed Kathryn Mannix, a palliative care specialist, who acknowledges that “the public focus on dying is one of the good things to have come out of this awfulness.” Death and dying is everyone’s business now. Never in recent memory have so many people been discussing how, where, and when they might die.
However, it is clear to us through the increasing number of conversations we are having with people that the pandemic has activated latent public appetite for planning ahead. This has not been borne out of fear of secondary care resources being stretched and nor is it the result of top-down diktat from government officials or doctors themselves; it is an appetite many people have realised they have after being confronted with the possibility of their own deaths. A rush to plan ahead is not something to be feared and instead illustrates that people want to exercise their right to make decisions and that there are practical steps that can be taken to achieve a good death.
Willis et al. remind us of the furore that surrounded the Liverpool Care Pathway (LCP), but are the parallels between this and advance care planning really so strong? The LCP was an attempt to capture expertise from within palliative medicine and disseminate it into wider clinical practice. But advance care planning, conversely, should be led by the patient’s wishes and priorities. This is a process that belongs to each of us as individuals as much as to any healthcare professional that may support the process. While doctors should be involved in conversations and decisions—and they play a crucial role in creating opportunities for these conversations to be had—advance care planning is not and should never be only doctor-led.
Undoubtedly people need honest information from their clinicians about their options and the possible outcomes of treatment decisions, but to suggest that advance care planning might fail without the expert eye of doctors overseeing the process implies that people cannot be trusted to make their own decisions. Underestimating people, even unconsciously, runs the risk of creating an overbearing doctor-patient relationship, something that everyone working in this area is united in wishing to avoid.
Primary and secondary care professionals will likely experience many opportunities to bring up the subject of advance care planning with their patients over the course of their treatment and care. We must ensure that healthcare professionals who encounter such touchpoints feel informed and confident to start these conversations, rather than deterred because they fear the discussion might be too difficult and complex. There is a real danger that advance care planning conversations are “outsourced” to the next healthcare professional along the line, and consequently do not end up happening until serious decisions need to be made quickly in stressful situations, which can be traumatic for all involved.
Willis et al. state that “Where there are assumptions, advance care planning risks becoming ageist, racist, and discriminatory.” If anyone finds themselves making assumptions about a person’s treatment and care then advance care planning hasn’t happened. Advance care planning is about enabling individuals—it should be the antithesis of those forms of discrimination.
There have been circumstances where blanket decisions were made about who should and should not receive certain treatments during the pandemic, rather than making decisions on an individual basis with people. Importantly, these decisions have been communicated in insensitive ways, sometimes illegally. This has all rightly prompted anger, confusion and legal action. This is not advance care planning, it is medical decisions imposed on others based on assumptions, which is in fact the opposite of advance care planning.
In amidst this confusion we propose a new future for advance care planning. A future in which the medical profession does not need to stand guard to the process but is encouraging, informative and supportive, and the desire of people to understand their options and make decisions about what’s best for them is celebrated.
This is a watershed moment and all of us who have been championing advance care planning need to act with humility, generosity and optimism. We should remember that while we have come a long way, the number of people documenting their wishes or appointing someone to make decisions on their behalf has stayed stubbornly low for many years (4% and 7% respectively). We now have an opportunity to reframe advance care planning as routine, everyday, and normal. It is the answer to the questions so many people are suddenly asking.
Our aim should be a society where only 4% of people haven’t thought about and documented their wishes for future care. To achieve this we need to create a culture which champions the immense value of advance care planning and facilitates as many opportunities as possible for it to be instigated.
Liz O’Riordan, Retired Consultant Breast Surgeon with breast cancer
Anushka Aubeelack, Clinical Fellow in Obstetric Anaesthesia and Intensive Care. Clinical Ambassador, Compassion In Dying
Usha Grieve, Compassion in Dying
Lloyd Riley, Compassion in Dying
Competing interests: None declared