'This is the way that I want to die'

Patient Phillip Melchior receives treatment from staff nurse Anne Carey at the haematology day centre at Auckland City Hospital. Photo / Dean Purcell

It might seem difficult to talk about the end of your life, but the conversation is important and worth it, says Phillip Melchior. Here he describes his response to learning he probably had less than a year to live.

There's no easy way of hearing that you're going to die.

We all know that death is the inescapable price we pay for having life. But for most of us, the end of our lives is not something we need to contemplate too much. Something, we think, we'll worry about when we get to be 80, or perhaps 85.

So when the physician tells you news so bad you never really even imagined it, it comes as a shock. In my case, the best guess was that I had six to 12 months.

I had been diagnosed with a rare (about five people in a million) and nasty blood disorder which was severely compromising my heart. Around 90 per cent of those afflicted by amyloidosis are dead within two years of having the disease identified.

I remember vividly the progression of thoughts the moment the doctor had left the hospital room. How glad I was that I had been able to retire early; how much I would miss watching my grandsons grow up and being part of their lives; how fortunate and fulfilling my life had been; and perhaps above all, how enriched I had been by family and friends.

I determined that I would try not to feel cheated by dying in my mid-sixties, but would focus on how complete my life had been to date.

And I wanted to make sure that everyone understood how I wanted it to go.

The concept of an "advance care plan" was not new to me. I had discussed the principles with my 89-year-old mother, who was adamant she should not be kept alive just because modern medical technology might be able to manage it. A dear friend had died recently after a long struggle with cancer, and she was passionate about retaining some form of control as she approached death.

I knew that terminology was vital in these matters. That the form of words used in communicating with those morally and legally charged with keeping you alive was vital, but also subtle.

What I didn't know was there is now a system designed to maximise the degree that I - the patient - could remain in control, even if I could no longer communicate with those caring for me.

When advance care planning was explained to me, it struck me as a no-brainer. Why would I not want to do this?

Yes, it means having to think and talk about things most of us would rather not have to confront. But the luxury of thinking "that doesn't apply to me" had been well and truly removed in a five-minute conversation with my physician.

The simple form begins: "If I can no longer tell you myself, I want those who care for me to know ..."

These are the things that are important to me; these are the things which make my life meaningful; these are the things I want the people I love to know and remember if I can no longer tell them myself.

And then there's the mechanics. Do I want medication that doesn't add to my comfort? Do I want my family and friends to be able to be with me? Do I have religious or spiritual needs? Do I want to offer any still useful bits of my body for transplant?

Together, as a family, we went through it. It's not an easy subject to toss backwards and forwards, but no-one raised their voice against my views, and I think they believed they would all feel fundamentally the same way in a similar situation.

So I don't want to be kept alive just for the sake of it. Being kept alive to enjoy a reasonable quality of life, which opens the possibility of further meaningful treatment, is one thing. Being kept breathing just because they can, is something else. In those circumstances I do not want treatment for anything except pain relief if required.

I do want my family and friends to be able to be with me - they are, I am in no doubt, the most important element of my life.

Personally, I have no religious or spiritual needs that can be met in the context of a terminal illness. And yes, in the unlikely event that someone in their mid-sixties has useful bits still to offer - I really want the doctors to help themselves.

You don't have to wait until they come to draw the curtains before you make your advance care plan. I see it in the same light as making a will. None of us know what's around the corner. Yes, it might be a lingering disease with no cure. But it might also be a stroke, a car crash or a falling tree!

I contrast the uneasiness of the proposition with the vastly more unappealing alternative of not doing it. I believe that my wife, the others in my family and all of those I love share my feelings on this.

Writing it down, signing off on it (as it were) seems the right and logical thing to do - a parting gift to myself, but more importantly to those I love and who love me.

• Phillip Melchior is a 64-year-old former journalist and senior business executive who spent much of his career in Asia and the UK. Since returning to New Zealand he has served on the Board of TVNZ, chaired the volunteer search and rescue organisation LandSAR New Zealand, and is on the board of Antarctica New Zealand. He is now 'in remission' from amyloidosis.

Forward planning key to ending days on happier note

When people face death from a terminal illness, they tend to be happier and suffer less stress if they have fully discussed their end-of-life care, a leading doctor says.

Auckland City Hospital neurologist Dr Barry Snow heads a national group of health practitioners devoted to encouraging terminally-ill patients to write an advance care plan after discussions with their family and doctors.

"Advance care plans started out as allowing people a voice when they won't later have a voice," Dr Snow said. "There's good research showing that when you've had this conversation and it has gone well, they feel less stressed, there's less depression, they pick and choose their health care in a way that helps them and their families, and they live longer."

He cited a study of 160 cancer patients expected to live no more than a year.

All were offered full, standard care; half were also engaged in advance care planning with a much more open conversation about end-of-life care.

The advance care plan group "tended to be more selective, more likely not to choose certain treatment options they didn't think would be worthwhile for them".

Sixteen per cent experienced depression, half the rate of the standard-care group, and they lived on average for 11 months, compared with nine months in the other group.

Dr Snow said he saw the same trends in his own patients who engaged in advance care planning. They were more likely to say they would prefer to go on holiday than come into hospital.

Dr Snow's national group, with district health boards and the Health Ministry, is urging everyone - not just the terminally ill - to consider writing an advance care plan, because anyone can suffer a serious accident that suddenly removes their ability to speak for themselves.

A plan can cover preferences such as dying at home, organ donation, and not wanting a religious practitioner present.

It might name who will speak on your behalf, although there is a specific legal process for appointing an enduring power of attorney.

It could also include a legally binding "advance directive" on the circumstances in which you want the goal of medical care to switch from prolonging life, to only providing care that is comforting, such as pain relief.

Looking ahead
This Wednesday in New Zealand's first Conversations That Count Day to raise awareness of Advanced Care Planning. For more information go to www.advancecareplanning.org.nz
For information on enduring power of attorney, see www.ageconcern.org.nz

additional reporting by Martin Johnston