Terminally ill patients need relationships with carers – health advocate

Radio NZ News 17 January 2017
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“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.”
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.
READ MORE: http://www.radionz.co.nz/news/on-the-inside/322545/terminally-ill-patients-need-relationships-with-carers-health-advocate