Advance care plans—back to the future?

In the noughties, as an attempt to improve care for the dying across healthcare, there was a wholesale adoption and rollout of a pathway to systematise and quality assure care for the dying—the Liverpool Care Pathway (LCP). However, after press reports of poor end of life care associated with the LCP, and after the results of an independent review in 2013, the pathway was phased out of clinical practice. In our laudable attempts to mitigate the real and present danger of a bad death from covid-19, we risk abusing the principles of advance care planning and sending it the same way. The bones of the LCP have been picked clean and we should have learned that fitting people to processes is misguided. The LCP was not to blame for its misuse. Much as a hammer, the tool in itself is morally neutral, the way that it is used or abused is not.

The foundation of advance care planning—that to anticipate future scenarios in which one may have clear preferences and to make those known in advance—is inherent to good healthcare. A capacitate person knows their own best interests and they are to be respected. The General Medical Council is clear that we are duty bound to understand our patients’ views on treatments and seek consent, not just in the here and now, but where someone is at risk of losing capacity to seek views about the possible benefits, harms, and risks of future interventions and the limits they may wish to set.  

An advance care plan seeks to capture and record this. It is not a single entity, it is a blend of conversation between two people: the subject, who is their own expert and knows their beliefs, values, experiences and goals, and a clinician. It is not a proforma to be completed, nor an independent fait accompli in need of agreement. It is unique. Blanket approaches, or those advance care plans generated without appropriate attention to all these areas risk being impersonal and discriminatory. An adequate advance care plan should reflect conversation about three distinct areas:

  1. Is a treatment wanted? This is about a person’s freedom. Patients are free in law to say no to treatment even when that decision is unwise or eccentric. Our duty is to ensure it is fully informed, freely made, and they have the requisite capacity at the time. For example, someone may not wish antibiotics or clinically assisted nutrition and hydration in the face of a catastrophic stroke, someone else may want the opposite;
  2. Will a treatment work and is it worth it? This is about someone’s entitlements and requires an open, explicit, and honest conversation about the potential efficacy, risks, benefits, and harms of treatments that may be on offer. Remember, treatments are only lawful when they have a realistic prospect of returning someone to a quality of life that they would want. On the one hand, someone may have a very different view of benefits and harms from their doctors and their view should trump any other. On the other, if a treatment will not work, it should not be offered. Here the responsible clinician’s decision trumps, although the patient and family are entitled to an explanation. They are also free to seek a second opinion;
  3. What other wishes are important? This is about the patient as a person. It includes inter alia their preferences about place of care and death, respect of their values and beliefs, the manner of their care and what they see as undignifying. Respecting these is absolute, although fulfilling them will depend upon available resources—one may want to die in a hospice, but at the time a bed may not be available.  

Developing care plans in advance is personal, complex, nuanced, and requires timely and skilful communication, often over several conversations, to be reliable and trustworthy.  

The principles of advance care planning reflect our moral responsibility to respect our patients. The covid-19 pandemic focus on limits in secondary care has led reasonably to a push for advance care plans as a means to promote good decision-making and palliation in the community much as the Liverpool Care Pathway was intended to bring good palliative care onto hospital wards. Sadly, the associated advance care plan rush may mean blanket and not personalised discussion to get an advance care plan done rather than to get it right. Where there are assumptions, advance care planning risks becoming ageist, racist, and discriminatory.

Like the Liverpool Care Pathway, advance care plans in themselves are neutral; the way that conversations are had is what matters. Poor communication may cause more harm than good, and could be worse than nothing. We all have a voice and we owe everyone the right to be heard by people with the requisite skills to hear and record it properly. 

Derek Willis, professor, Chester University, UNESCO Biomedical Ethics department, Edge Hill Uinversity

Rob George, doctor, St Christopher’s Hospice, London

Guy Schofield, Centre for Ethics in Medicine, Bristol Medical School

Amy Proffit, doctor, St Christopher’s Hospice, London

June Jones, senior lecturer, Edge Hill medical school and UNESCO Biomedical Ethics department, Edgehill Uinversity

Competing Interests: None declared