During Dying Matters Week, 8–14 May, communities across the country are encouraged to talk honestly and openly about death, dying, and grief. In this blog, Dr Simone Ali, medical director at Martlets, demystifies the important process of Advance Care Planning.
“Advance Care Planning (ACP) ensures patients’ wishes around their care are respected, so they are able to live and die in accordance with their goals, needs and values.
The process is an opportunity to record your preferences for future care and treatment, in case you become unable to communicate your wishes at a future point in time. This might include what you, as a patient, want to happen in terms of clinical interventions, where you want to be should you become more unwell, or perhaps any specific rituals or cultural practices you would like to take place. It is a voluntary process that happens between a patient and whoever is looking after them in a professional capacity.
Starting the conversation
I find it helpful to ask my patients what it is that is important to them at that time in their lives. I ask them to share their goals and priorities for care with me, if they feel able to do so. It may be that it’s the patient’s priority to complete some practical things or get their affairs in order, maybe visit places they haven’t been before. Others may want to focus on spending the time they have left at home with their loved ones. I may ask what that means in terms of the treatments a patient is willing to accept as some of these may require some time in hospital or at the hospice.
One patient’s goal was to live long enough to attend her daughter’s wedding some weeks later in the summer. That was hugely useful to know because then I could guide her treatment accordingly. For example, if she were to encounter something possibly life-threatening in that time such as an infection, she would have wanted us to be very proactive in treating that irrespective of some of the possible harsh side-effects of treatment, because her goal was to be there for her daughter. For someone else, enduring further invasive treatment and side effects may not be what they want as they enter the last phase of their life.
It’s trying to understand from a patient’s point of view, whether it’s about quantity of life or quality of life, and then pitching the conversation, sensitively, around that.
We know that ACP ensures that patients’ wishes are respected. They are more able to be cared for and, ultimately, to die in the place of their choosing, and inappropriate tests and treatments that might be invasive, and/or that carry more burden and risk than benefit, can be avoided.
Without good ACP, the chances of a patient having the experiences they want towards end-of-life become markedly reduced, and the likelihood of unwanted and clinically inappropriate treatments becomes more likely.
It’s important in end-of-life care that patients don’t get taken off to hospital if that isn’t wanted. We know that planning in advance means the patient’s quality of life, and their quality of death, is much better. This of course has an impact on their family and on the bereavement process thereafter.
A planning process to help with one aspect of ACP has been in use locally, based on some national work that has been rolled out over the last few years. It’s called ReSPECT which stands for Recommended Summary Plan for Emergency Care and Treatment. It’s a process for discussing and recording recommendations for emergency treatment, but it involves all the same principles as ACP – good communication and dissemination of that information (with the patient’s permission) to other relevant healthcare providers and significant others, so that everyone who needs to know is aware that this is what the patient would want.
An evolving discussion
Advance Care Planning is an evolving discussion, based on open and sensitive communication, ensuring that the preferences of the patient are heard in the context of discussions around end-of-life care. It can be revisited at appropriate junctures, as the patient’s wishes may change over time.
Finally, it’s worth knowing that there are three key outcomes from ACP:
- Advance Statement – a verbal or written statement summarising the patient’s preferences and wishes regarding what they would or wouldn’t want in terms of their future care.
- Lasting Power of Attorney (for Health and Personal Welfare) – the appointment of someone else who can make decisions on your behalf if you become unable to do so yourself in the future.
- Advance Decision to Refuse Treatment (ADRT) – this used to be called a Living Will or an Advanced Directive.
Discussing these practicalities in relation to end-of-life care might feel uncomfortable initially, but making a plan can provide peace of mind and free you up to spend precious time doing what really matters to you.”
Read our other blogs for Dying Matters Week: