Good death proves too hard to get

Up to 85 per cent of terminally ill New Zealanders do not get support when they need it to have the sort of "good death in their own bed" that Sir Howard Morrison had.

Instead, too many families watch their loved ones suffer in distress, Health and Disability Commissioner Ron Paterson told a seminar on the Liverpool Care Pathway for Dying Patients in Palmerston North yesterday.

He said the hundreds of complaints his office received each year represented only a fraction of the problem.

"Most people don't go to the trouble, and when you are grieving, a lot of people don't want to put the energy into a complaint."

But some of the cases he had investigated showed examples of poor nursing, of treating patients with a lack of dignity, forcing religious views, and fragmented care. Those shortcomings breached patients' legal rights.

He said palliative care reached only about 15 per cent of those who needed it in Auckland.

Mr Paterson has endorsed the Liverpool care pathway, based nationally at Arohanui Hospice in Palmerston North, as a valuable tool for ensuring that dying people get the holistic care they are entitled to.

It is now used in 135 facilities and community services around New Zealand.

Some British doctors have expressed concern that when all the pathway's boxes were ticked, patients could die prematurely as a result of changes in their care.

Mr Paterson said the pathway was not a "tick box list", and would not work well without proper education and support.

It prompted carers to step back and reflect on the patient's condition, to diagnose whether death was likely in the next day or two, determine the patient's needs and plan how to meet them.

Patients could be taken off the pathway at any time if they showed unexpected signs of improvement up to 10 per cent do.

Mr Paterson said the law, codes of rights and care plans could not guarantee compassion, something he had resisted calls to have included in law.

"It is ultimately a gift from the heart."

When care of the terminally ill goes wrong:

"Tragically unhappy, unnecessarily distressing, and frightening". That was a family's summary of a patient's last 11 weeks of life, despite careful plans. Increasingly ill with multiple myeloma, the patient was admitted to hospital. He was discharged to a private hospital where he developed bed sores, was told to "take Jesus into his heart" and didn't get appropriate help to use the commode.

A man with advanced bladder cancer became increasingly ill in the lead-up to Christmas. A GP allegedly told the family, "if you think you have got it hard now, it's only going to get worse from now on". It did. He ended up spending Christmas and New Year in a private hospital, which he specifically did not want.

A patient knowledgeable about end-of-life care, in a medical ward of a hospital, suggested alternative medication from the one prescribed. Staff treated the suggestion with "scorn and disdain".

(From complaints to the Health and Disability Commission).

- © Fairfax NZ News