You may have heard of this before and you may already have an Advance Care Plan (ACP). Or you may never have heard the term before. In any case, it’s something we all need to be aware of and think about.
Advanced Care Planning (ACP) is about planning for your LIFE and in particular, what happens if you have a sudden serious injury or illness and you become unable to make or communicate decisions on your own.
ACP is a joint responsibility of patients, relatives and healthcare professionals to produce together. It can be revisited or amended at any time and will only be referred to if you become unable to communicate for yourself. We know that patients and family members who have produced an Advance Care Plan feel comforted, reassured and empowered: patients know their wishes will be followed; family members know what their loved ones want and professionals know that they are acting in the best interest of their patients. Yet in spite of this, ACP is not yet a normal part of kidney patient care.
Coronavirus has very sadly highlighted this important gap and tragically meant that many people have died without an ACP or their loved ones knowing what their end of life wishes were.
Patient Advocate and Kidney Wales employee Brett Dowds (currently on furlough leave) shares his personal experience, as a kidney patient, of creating his Advance Care Plan:
“A lot of people shut down when they hear about Advanced Care Plans (ACPs), as they don’t like to think about them. However I have found having an ACP to be a good way to keep control of my health and not leave my family with the responsibility of having to make serious choices on my behalf, if I was ever unable to do so myself.In North Wales we have a simple booklet which breaks the process down into five sections. The first is about the ACP itself, sections two and three are about you and your health, the fourth is about whether you can make decisions for yourself and the fifth section is about what happens after your death. While this seems like a hard pill to swallow, I personally found it very practical as it speaks about the importance of having a will, setting up funeral arrangements and nominating a person you can trust to have access to documents like your mortgage, passport, driving license etc. The important thing to remember is that anything you put in here can be changed at any time as it is your plan – I find it very empowering to have full control over every aspect of my life.Your ACP also does not need to be completed all in one go, you can take your time with it. Your kidney care team will have specialists in advance care planning and will be able to assist you”.
Read more about Advanced Care Planning in Issue 5 of the COVID 19 newsletter for kidney patients