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Advance care planning: an illusion of choice?

Over the last decade or so, patients have been encouraged to think ahead, and make clear their wishes and plans for a time when illness may render them unable to makes decisions about their care for themselves. This process we know as Advance Care Planning (ACP). Intuitively, as a hospice physician trained in Palliative Medicine, ACP seems to me like a good thing to do, with those patients who are willing to do it. We can empower patients to make decisions about their future which might result in care that is more in line with their wishes than would have otherwise been the case. We might be able to reduce their anxiety about the future, and avoid putting them through treatments that are likely to be more burdensome than beneficial. Through the process of ACP, we might also be able to better prepare families, partners, and friends for the death of a loved one. There is evidence to show that all of these things may happen.

However, whilst my belief remains that ACP is a worthwhile process for patients, I sometimes wonder if our current healthcare and social care systems can support the options and outcomes patients are hoping for. In our consumerist society, expectations of care are higher than ever, but can they really be met? For example, there was a drive following the End of Life Care Strategy in 2008 to identify a patient’s preferred place of death, in order to reduce the number of expected deaths in hospitals, and facilitate more home deaths for those with incurable illness, which is in line with most people’s wishes. In my experience, with the right support, a home death can be a very meaningful experience for a patient and their family. However, it can also be an isolating and anxious time for those who have no one but the state to support them. The state can very seldom provide nurses or carers for someone who needs care around the clock. The reality is usually intermittent visits from a combination of professionals, potentially resulting in someone being alone for the majority of the time. In short, a home death of the sort that is wished for by patients is less realistic for those who have no readily accessible practical support from family or friends. Patients choosing a home death need to understand these challenges.

Image courtesy of St. Peter’s Hospice, Bristol. Do not reproduce without permission.

The doctor-patient relationship is also changing, where, increasingly, patients perceive themselves to be the customer and the doctor the service provider. What ACP does not do, however, is allow patients to demand future treatments or interventions that the professionals believe to be inappropriate or futile. ACP is also based on an assumption that we can predict the future course of an illness, and whilst in some cases this is true, neither patients nor professionals can ever envisage all the likely scenarios. When a patient’s ACP comes into effect, clinical judgement is needed to see if it applies to the current circumstances. As I write this, I am thinking of a patient I cared for in her eighties, who had cancer and was being nursed in a hospice. She and I had talked about her wishes, which were that she didn’t want to return to the hospital, and wanted her ongoing care to be delivered in the hospice setting. A few weeks after our conversation, she became confused and fell out of bed. She had broken her leg, and her pain was impossible to control with painkillers—she was in agony. With a heavy sense of responsibility, I remembered our conversation, but had to ask myself whether either of us had envisaged this situation she found herself in when she had made her plan. On balance, having got to know her over a number of weeks, I believed that she would not have wanted to avoid hospital at all costs, if it was the only chance of relieving her severe pain. On that basis, I sent her to the surgeons at the local hospital to get her leg fixed. I explained to them that the aim of this was pain control, and that we wanted her back in the hospice as soon as possible. She came back to us two days later, with very little pain, and died peacefully in the hospice a few weeks later. I felt that I had made a good decision in the end, despite my initial reservations.

I’m still a fan of ACP, despite its challenges. For me, the process of ACP involves getting to know my patients more deeply, and increasing my understanding of their beliefs and values. I think that this strengthens the doctor-patient relationship in the moment, so the quality of shared decision-making can improve straight away. In situations where it is difficult to know whether an Advance Care Plan applies to the clinical situation, the knowledge that has been gleaned through ACP discussions can help professionals make a decision that is more likely to be in the best interests of the patient, based on a better understanding of what they were thinking at a time when they had mental capacity to make health care decisions. My view is that engaging in ACP gives us the best chance of making sure future wishes are met, but it is important that those taking part in it understand that anticipatory decision-making is complex, and may not always deliver exactly what has been requested.

Featured image credit: Aerial view of a crossroad in Shah Alam, Malaysia by Firdouss Ross. Public domain via Unsplash.

Recent Comments

  1. Raymond George Davies

    My wife passed away at home this year on May 28th. She was cared for by Hospice which allowed my family and me to concentrate on her communication needs.We were at her side continously while she was awake. It was an experience the enabled her and us to handle the loss with the minimum of suffering. You can accept what you experience if know that there was nothing else could have been done.

  2. Alison

    Feel I am not included in my mums palative care yet my siblings are and makes me very upset

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