New plan for last days of life

MY WAY: Jean Whitteker, 91, believes her advance care plan will allow her to ‘‘die with dignity – my way’’.
MY WAY: Jean Whitteker, 91, believes her advance care plan will allow her to ‘‘die with dignity – my way’’.

A controversial national health programme giving patients control over their own death has been criticised as "euthanasia in disguise", but Jean Whitteker, 91, thinks it is a blessing.

Advance care planning (ACP) is a new concept in New Zealand that grants patients the right to plan their death care, including choosing to decline lifesaving treatment in order to die naturally.

For Whitteker, a plan has given her confirmation that she will "die with dignity - my way".

Knowing doctors will be legally bound to respect her wishes and not use unwanted treatments to prolong her life has come as a huge comfort.

She watched her mother slowly die from cancer. Her late husband suffered a debilitating stroke and "lived a lot longer than he wanted to".

"I can't see the point of being kept alive just to die at some time in the short distance. I would just love to not wake up one morning and that would be it," she said.

Whitteker was one of the first Cantabrians to create an ACP after increasing national focus led the Canterbury District Health Board (CDHB) to push extensive resources into raising awareness.

Those involved with rolling out ACP have been tasked with first educating clinicians on how to hold sensitive conversations about the "socially taboo" subject of end-of-life care.

"This is talking about thinking ahead to a time when you are dying or too incompetent to be involved in your own health care. It is not a subject that is easily talked about and we are trying to break some of that taboo now," CDHB clinical director of palliative care Dr Kate Grundy said.

Through ACP, patients talk with health professionals and their families about how they want to die, knowing they will probably lose the capacity to make their own decisions as they near death.

In a tick-the-box application form, patients outline their values and beliefs, choose where they want to be when the time comes, if they want family members around and whether they want feeding or breathing tubes in their final days.

Patients can choose to refuse all medical treatment, which would lead to their death, and this controversial measure has led to an "ignorant belief this is a kind of euthanasia in disguise", Grundy said.

This was a "complete misconception". Patients could not write on their plan that they wanted to die. ACP merely gave patients a voice about their own health care.

"People want to have some guarantee that when the time has come and their quality of life is poor, that they will be allowed the comfort and dignity to die. This is not euthanasia. Everybody is allowed to die a natural death."

In a submission to the National Ethics Advisory Committee in December, the Royal New Zealand College of General Practitioners discussed the potential ethical challenges of ACP.

If a health professional did not personally agree with a patient's choice they were still duty bound to follow it if the individual was competent and made their decision free from undue influence, the submission read.

It highlighted a 2009 court case in Australia in which a 49-year-old quadriplegic successfully argued for the right to have food and water discontinued, knowing it would kill him.

He was not terminally ill and died six weeks later.

If the plan "requires the health professional to act contrary to his or her ethical or religious beliefs, then the health professional should pass the individual's care to another", the college said.

Christchurch GP David Robertson supported ACP, but believed it was more controversial for doctors than patients.

Patients have the right to decide what they want, but "some doctors may struggle to watch a patient slowly die knowing that they could save their life with treatment".

ACP only gained recognition in New Zealand in 2010 after clinicians attended the first international conference in Melbourne.

The first ACP national awareness day, called Conversations that Count, will be held in New Zealand on April 16.

The CDHB created its own ACP form less than a year ago and in the past fortnight it has uploaded five plans into an electronic system, Grundy said. Ten Cantabrians were working through an ACP with their GPs.

"There is nothing more certain than we are all going to die one day, it is just a matter of when and how, but if you have the chance to think about it beforehand it makes it easier when the time comes," Grundy said.

Whitteker had a stroke last year and her quality of life is not what it used to be, but with an ACP in place, she no longer fears death.

The Press