Terminally ill patients need relationships with carers - health advocate

Outspoken - A leading patient advocate is calling for more continuity of the carers who help those with a terminal illness.

Aucklander Lynda Williams, a longtime staunch advocate for health consumers, was diagnosed with pancreatic cancer in October last year.

But she remains the spokesperson for the Auckland Women's Health Council and has put out its regular newsletter while receiving chemotherapy and organising her affairs, including helping family members prepare for when she is no longer there.

She is well known in health circles as an advocate on women's issues, and for her evidence-based, forthright approach.

She said being "bolshie" has served her well as a patient.

"If I don't get to see the same person I make a bit of a fuss. Given that it's pancreatic cancer and I don't have time to muck about I'm not at all backward in sticking up for myself and saying 'this is what I need'.

"You need a relationship, a safe, trusting environment and a relationship with someone who knows you in order to start discussing end-of-life care.

"And I know from many of the focus groups and the meetings I've attended on cancer services that a lot of people don't get the kind of care and support."

End-of-life and palliative care were under the spotlight last year as Parliament's health committee considered a petition seeking legislation to facilitate voluntary euthanasia under certain circumstances.

Ms Williams said end-of-life care was an area where New Zealand needed to do better.

"I think it's absolutely vital that people facing the end of their life have access to that kind of care.

"We've got a long way to go and there's not a lot of informed consent going on in some of these services either."

This mirrors the views of former health and disability commissioner Ron Paterson, who said informed consent was often more honoured in the breach.

"We've got all the forms but whether it happens in practice...," he said.

'Unfortunate experiment' and childbirth inspires advocacy

Ms Williams said her own experiences in accessing contraception and in childbirth generally made her passionate and resolute.

"It made me determined to try and find out how these decisions were being made and who was making them, because there was a lot of stuff you were told you could and couldn't do, which didn't turn out to be right.

"There was nothing written down but they made it sound like there was some kind of tablets in stone written about the way you were supposed to behave as a mother."

She was also involved in landmark events surrounding the so-called "unfortunate experiment" involving delayed cervical cancer treatment at National Women's Hospital in the 1980s.

Afterwards, and following the Cartwright Inquiry, she became the first patient advocate at National Women's Hospital in Auckland.

Sandra Coney, who wrote the 'Unfortunate Experiment' article with Phillida Bunkle for Metro magazine, said women's worries about childbirth escalated during the women's movement in the 1970s.

She agreed with Ms Williams that childbirth was depersonalising for many women.

"Husbands couldn't come in at a birth, if the child was sick in hospital the parents very often couldn't visit the child, the children weren't allowed in to see the new baby, and in those days the mother might be kept in for quite a long time."

Asked about the maternity system now, Ms Williams said she believed it was one of the best systems in the world.

"We have choices and we have good competent care. Yes things can go wrong during childbirth like any other procedure that takes place in a hospital setting but our statistics are really good when you look at other countries."

However, she said women "have lost faith ... in their ability to give birth and lost control over the process".

They both said of particular concern was the "medicalisation" of childbirth, seen, for example, in the steadily rising rate of caesarean births and frequent tests during pregnancy.

Outspoken is a series in which RNZ's experienced correspondents host debates on some of the top issues of the year - and the year ahead. Check back for new episodes this week here.