Over the past fifty years or so, science and medicine have been remarkably successful in extending people’s lives. But health professionals, focused on curing illness, or preventing or delaying death, have been far less successful in respecting people’s wishes with regard to the nature of their deaths – where they wish to die and the medical interventions they may or may not wish to receive as they approach death. At a time when patients are increasingly supposed to be participants in decisions about their care, that is doubly troubling, and it is why a seminar held by the charity Compassion in Dying at the end of March this year was so welcome and worthwhile.

The seminar had three objectives: to consider the findings from Compassion in Dying’s systematic review, examining the extent to which treatment wishes set out in preference tools are respected; to examine evidence from the United States where Physician Orders for Life Sustaining Treatment (POLST) are being used successfully alongside advance decisions as immediately actionable medical orders; and to consider what needs to change in the UK to enable advance decisions to be better embedded in healthcare systems.

The findings of the systematic review were salutary. In the UK, the refusal of treatment is one of the few rights we have at the end of life if we have lost mental capacity or the ability to communicate, but it must be exercised before we lose capacity, either by making an advance decision (also known as a “living will” or “advance directive”), or by giving someone we trust lasting power of attorney (LPA). The refusal of medical treatment has statutory force in England and Wales and is binding in common law in Scotland and Northern Ireland.

So far so good, but advance decisions and LPA are not routinely used in the UK and, even when they are, there is no evidence of the extent to which they are respected by health professionals.

Tacitly acknowledging this in July last year, the General Medical Council published new guidelines for doctors in the UK on advance care planning for patients nearing the ends of their lives. They emphasise the importance of listening to patients and recording their wishes to ensure that everyone involved in treating them can understand and follow their directions.

People have just as much right to participate in decisions about their end-of-life care as in any other decisions concerning their healthcare. There can be no doubt that proper recording of their wishes in Advance Decisions and buy-in to that process by healthcare teams helps greatly to ensure that a patient’s wishes are respected. But that appears to be the exception rather than the rule in the UK at present, and that must change.

In the United States, most healthcare institutions are required to provide adult patients with information about advance directives on admission to a healthcare facility, and locally driven initiatives to record and act on patients’ end-of-life wishes have been in place for many years.

One example of good practice is to be found in POLST, used in varying degrees across the US. POLST is designed to convert patient preferences for life-sustaining treatments into immediately actionable medical orders, and to be transportable between care settings. It works in synergy with end-of-life programmes, where details are stored electronically in easily accessible patient records, and its use is widely supported by healthcare professionals, with strong uptake as a model for working.

The Compassion in Dying review found that in another programme – Respecting Choices – in La Crosse, Wisconsin, almost all patient decisions regarding hospital admittance were respected because questions about treatment options were asked in advance and either built into care plans, made easily accessible within patients’ records, or both.

All this contrasts starkly with the way in which end-of-life decisions are taken in the UK where the public are not well informed about their end of life rights, and where there is still confusion amongst health professionals.

The seminar, which included representatives from a wide range of patient organisations, professionals bodies, and ethical, legal and social science academics, felt overall that:

• it was the responsibility of doctors to discuss resources such as advance decisions and LPAs with patients at particular “trigger points” – upon diagnosis of a chronic or terminal illness, for example, or more routinely, when a patient registers with a practice. But the implementation of advance decisions and their equivalents should be the responsibility of all health and social care professionals, especially those who coordinate community care and discharge from hospitals.
• Health professionals need to acknowledge that, rather than being filled out solely by the individual concerned, advance decisions are often completed in consultation with family and loved ones.
• There should be a national register for advance decisions and their equivalents to ensure that they can be accessed easily.
• There are examples of good localised practice within the UK. They need to be properly evaluated and shared nationally. And there is a need for national guidelines going beyond mere suggestions for good practice.
• A new tool is needed, in addition to advance decisions. The American POLST model could well be suitable for adoption in the UK.
• As an organisation, Compassion in Dying must ensure that it provides clear, accurate information for patients, carers, and healthcare professionals about potentially confusing areas of this quite complex subject.

The seminar was focused, forward looking, and constructive. My only concern about events of this sort is that they are too often forgotten once the applause has died down. From the patient’s perspective, this is a hugely important subject – just consider the three out of five people who would like to die at home but actually die in hospital; the gruesome stories of healthcare professionals’ indifference to the health status of frail, elderly patients; and the anxiety most of us must have about losing our dignity as we approach the ends of our lives. Personally, my worst nightmare is about being kept alive with little or no quality of life by healthcare professionals who believe they will have failed when eventually I depart this world, as all of us must.

Peter Lapsley is patient editor of the BMJ.