Unbearable suffering can be avoided with good, safe laws

Her experience in palliative care has convinced Dr Libby Smales that people need the option to end their life in the face of unbearable suffering while dying. Photo / Duncan Brown

After many years working in palliative care, Dr Libby Smales has seen the suffering that can be associated with dying and remains passionate about the value of good palliative care.

Dr Smales played a key role in opening Cranford Hospice in 1982 and was its medical director for 20 years. Her contribution to the hospice movement was recognised in 2004 when she was awarded the CNZM.

The establishment of hospice palliative care services had made a significant difference to the management of dying people and their families, and pain was no longer the thing people feared most, rather it was helplessness, hopelessness and suffering, she said.

"For most of us, most of the time, good hospice palliative care is enough, we do not need to suffer.

"However research data tells us that even such excellent care can't fix all suffering for all of us."

For the small number that experienced unbearable suffering while dying, having the choice to end their lives peacefully surrounded by those they love was something most New Zealanders wanted, she said.

"Most of us would like to die peacefully at home in our own beds with our families - most of us do not."

From her personal experience, she had seen people suffering enormously, to the point they had made the choice to hasten their death on their own terms.

"I have a friend who ended her life by stopping eating and drinking – she was 83 and still had a crisp brain but had advanced peripheral arterial disease that caused intolerable pain, an inability to walk more than a few steps, an inability to drive or live independently, with the likelihood she would lose her legs.

"None of the pain relief she tried made a difference in doses she could tolerate – surgery was not an option – so she chose to end her life by stopping eating and drinking.

"This required huge determination on her part and it was very hard for her to endure and hard to watch."

Another person she knew had Motor Neurone disease.

"While she was dying and could still talk she told me that dying was not the worst part - it was knowing that tomorrow she may not be able to talk and at the end she would not be able to move at all, not even able to blink or swallow - she asked for and received terminal sedation."

For some people having that option was very important, she said.

"We could not always keep someone comfortable and awake, managing the last few hours or days with them peacefully asleep was an option patients and families really appreciated."

Such options were not always available, however, whether it be due to a lack of palliative doctors and nurses, or that they were living in an area that did not have hospice facilities close by.

Dr Smales rejected the argument that vulnerable people could be coerced into making a decision they did not really want.

"This is not something you do straight away - this is something you consider and discuss when you know the reality of your situation and what's likely to be ahead of you.

"I can't believe it is beyond us to draft good, safe legislation to allow such choice - so many other jurisdictions have already done so."

She added that ending your life rationally was quite different from suicide when the balance of the mind is disturbed.

Currently 10 per cent of coroners' suicides were thought to be rational dying people taking their own lives to avoid unbearable suffering, and such deaths had to happen alone to avoid implicating anyone else, and while one was still able, ending some lives prematurely.

"If three quarters of us want a law change so we have that choice I think we should listen to that - it's a choice, no-one is forced into this option.

"I think New Zealanders want better and we deserve better, and there are international models that show us how we can create good laws that are safe laws."