Advance care plans can help reduce stress and tension in families

This article was contributed by Jan Wallace, an Anglican priest living in Auckland.

A few years ago, I was invited to join the locality health forum for our hospital board area and became particularly interested in palliative care, also known as end-of-life care.

Through the local palliative care group, I heard about advance care planning (ACP), which is the process of thinking about, talking about and planning for future health care and end-of-life care.

I joined a community training programme and presented information to clubs and groups encouraging people to engage in ACP conversations. I wondered how many would go on to have conversations with their families, medical practitioners or complete their plan.
I was amazed how reluctant people were to talk about their end-of-life wishes. As an Anglican priest, I found many families had little knowledge of what their parents or loved ones would want when they were nearing the end of their lives. They were also unable to express their own wishes.

It also became obvious to me that parishioners and people I had ministered to had not told their families what they would like to happen. This was quite surprising to me, although I guess it is natural that people don’t wish to stress their nearest and dearest unnecessarily.

Helping people to complete their ACP is simply about listening to what the person wants to share and helping them to record it. It is a real privilege to be allowed to share these special times with people as they approach the end of their earthly life. Having those who love and care for them know their wishes provides them with peace and comfort.

Your ACP is your document to update as your condition or life changes. It can be shared with your GP and, in many areas, loaded into a patient management system, such as Manage My Health.

Tensions can arise when members of the family have different views on what their loved one would wish for when the end of their life is approaching and I have been called in to facilitate discussions when family members don’t agree.

This can be interesting, especially if people come from different cultures, faiths or generations. I have had a couple of discussions where a person wanted the cultural tradition for their parent. However, their parent has listened to their New Zealand-born adult grandchildren and, as a result, wanted to follow more western traditions.

ACPs are not just for the elderly or terminally ill. A mother of late teen-aged children called me in when her ex-husband was hit by a drunk driver when he was standing beside his vehicle.

Medical staff advised that the dad’s life support needed to be switched off. He was a fit and healthy man, there was potential to donate his organs and his ex-wife had to make a decision about this with their children. Naturally, the mother found this extremely distressing and asked me to support her children.

At that time, I was not aware of ACPs. The situation would have been more easily dealt with and considerably less stressful for them if a plan had been in place.

I don’t believe it is right for young adults to be put in this position when we have the opportunity to make our own decisions and have them recorded. Often people will say ‘I have written it in my will’. That is too late, as the will is not usually read until after the funeral, so decisions and end-of-life care will already have been made.

The Health Quality & Safety Commission is leading a five-year strategy to promote advance care planning throughout New Zealand in partnership with district health boards. For further information, go to www.myacp.org.nz.

You are also welcome to email me on janandbobwallace@xtra.co.nz.