Norman’s children all believe they know what he would want when he is dying.

I picked up many, many gems of wisdom from North Sydney’s ‘Conversations about Death and Dying’ on Saturday, (May 25, 2019.) It never ceases to amaze me that no matter how much you think you know about a subject there is always so much more to learn.

One of the handy discussions that came out of the day was Kelly Arthur’s talk about advance care planning. Kelly is a palliative care consultant at Hammondcare. She is currently working on The Advance Project, funded by the Australian Department of Health and designed to give support to Australia’s primary care doctors (general practitioners, ‘GPs’) to help patients wanting to initiate a conversation about their advance care plans with their family.

I am inspired to sketch the following by Kelly’s talk.

Let me introduce Norman for ‘normal’ (not!) and Angel for ‘Angelic’. This is the scenario at Norman’s hospital bed in his last days. It’s a bit of a fantasy really or at the very least, unlike the experience of most people:

1. He has a wonderfully devoted multi-generational family who all love Norman and want to spend time with him, so much so, that he has a constant stream of visitors.
2. He has a devoted spouse, Angel, of 66 years who is ‘on the same page as Norman’ so can articulate what Norman would want as he dies.
3. Norman and Angel have four children who all get on with their parents and each other. They all feel equally loved by, attached to and devoted to Norman.
4. They all live close by, which facilitates their constant popping in.
5. They all visit regularly.
6. Their visits are all emotionally uplifting for Norman.
7. When they have conflict with each other they don’t bring this into his room. Instead they negotiate this quietly and respectfully, with kind words and without imposing this conflict on Norman. (They never yell or get grumpy with each other anyway, but that’s an aside.)
8. All agree on what Norman would want when he dies because they have all been part of many, evolving conversations with Norman on this very subject.
9. Norman has selected one of his children to be his ‘enduring guardian’ (this is NSW parlance for his ‘substitute decision maker’) and all respect his choice.
10. All the family know the contents of Norman’s advance care directive, which he has signed and which is recognised and accepted by the hospital he is now in.
11. All Norman’s family are confident about his enduring guardian’s interpretation of Norman’s advance care directive.

Do you know any family that hits all those buttons? Really?

Here is the much more typical reality. You only need to tick ONE of the following boxes, or have one similar scenario in your life, to have to do more thinking, organising and forward planning to achieve a good death.

1. Many of Norman’s extended family don’t realise he’s in hospital. They would like to visit but it’s a work day.  Those who were particularly fond of him in earlier days are sending him a quiet prayer instead. But he’s having lots more lonely moments than he’d like to admit.
2. Norman’s second wife, Angel, feels she is long-suffering. Norman had two children with his first wife of 10 years, Delores, and two children with Angel. Angel has been married to Norman for 30 years. She can still be surprised by the things he comes out with, which is a source of great renewal in their marriage but can sometimes lead to unpleasant surprises.
3. The two children of the first marriage, a boy and a girl, struggled with their step-mother. They still feel residual resentment over her place in the family. The two children of the second marriage, a boy and a girl, have never really understood each other.
4. Norman and Angel live in an inner suburb of Sydney. One son lives in New York, one daughter lives in Queensland, one son lives in Nowra and one daughter lives three suburbs away from Norman and Angel.
5. Only one child visits regularly. All have observed that the further away from Norman you live, the more fondly he speaks of you.
6. About one in five visits to Norman from his family are genuinely emotionally uplifting for him. About one in 20 visits leaves him feeling truly wretched. He does not know which combination of his family visits will deliver which experience.
7. When the family have conflict with each other it can be explosive. Other times it is just undermining. Two of the children sometimes fight in front of other people.
8. No-one has talked to Norman recently about what he would like when he dies. When one of the children tried to raise the subject with him 10 years ago he was very affronted. Then when he tried to raise it five years ago with another, she felt he was being very manipulative.
9. Norman hasn’t selected an enduring guardian. He has selected a power of attorney and he thinks this is the same thing.  
10. Norman hasn’t written an advance care plan because it’s too confronting.
11. Every single one of Norman’s children believes that they know what he would want when he is dying but they have never talked with each other about it.

To find out more about The Advance Project, go to: https://www.theadvanceproject.com.au

To see why Kelly Arthur believes advance care planning is so important, go to: https://palliativecare.org.au/kelly-arthurs-is-dying-to-talk

Listen to her talk about demystifying palliative care in episode 24 of Wisecare.

To purchase your copy of A Good Death; a compassionate and practical guide to prepare for the end of life, go to: https://good-grief.com.au/a-good-death-book-margaret-rice/