Summary
Wednesday 7 May is Advance Care Planning Day, which highlights the importance of individual care planning for future health and social care. Dr Simone Ali, a consultant in palliative medicine at Martlets, demystifies this crucial process.
“Advance Care Planning (ACP) ensures patients’ wishes around their care are respected, so they can live and die in accordance with what matters most to them. We need to understand their goals, needs and values so that we can provide the best care possible. The process is an opportunity to record your preferences for future care and treatment, in case you become unable to communicate your wishes in future. 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.
Watch our short video about Advanced Care Planning
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.
Planning ahead
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.
Sharing information
Good communication and dissemination of ACP information is crucial. So, with the patient’s permission, the ACP is shared directly with other relevant healthcare providers and significant others. Then everyone who needs to know is aware that this is what the patient would want. (A planning process called ReSPECT, which stands for Recommended Summary Plan for Emergency Care and Treatment is also available in some areas of the UK to record recommendations for emergency treatment, but it involves all the same principles as ACP).
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, as the patient’s wishes may change over time.
Finally, it’s worth knowing that there are three important 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.”
At Martlets, patients and their families are invited to speak directly to their care team about ACP. If you’re considering making an advance care plan for yourself or assisting a loved one to do so, you can also visit Hospice UK for details of how to begin the process and what is involved.
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Originally published 11/05/2023 republished 01/05/2025