More emphasis needs to be placed on patient priorities and preferred outcomes when it comes to evaluating what represents value across palliative care services, according to a leading health economist and palliative care expert.

Health economist with the Palliative Care Clinical Studies Collaborative, Dr Nikki McCaffrey told ehospice when it comes to end-of-life care, our health system relies too heavily on clinicians and policy makers providing measures of quality, rather than patients.

“The problem is that if we don’t measure what is valued by patients, then healthcare service provision can fail to adequately address complex issues and only focus on areas that are to do with professional standards,” she said, adding that those complex issues are particularly relevant to end-of-life decisions and palliative care.

Dr McCaffrey was responding to an opinion piece, published recently in the Journal of the American Medical Association (JAMA) which said patients should be asked what they value, so the US health system can deliver on those priorities.

The JAMA article followed a decision in the US to tie most Medicare fee-for-service payments to value by 2018, in order to improve health system performance.

“Serious, life-altering, and ultimately life-ending chronic conditions, often in old age, pose a particular challenge for the health care system because traditional professional standards may not effectively address what an individual most wants,” the authors wrote.

“Individuals confronting grave illnesses, severe pain or impairment, and mortality must manage their hopes and fears and consider critical factors such as being comfortable, controlling finances, having food and shelter, being connected with others, honoring their family and social role, and being right with their spiritual commitments.

“Patients and physicians are often confused by this unfamiliar situation.”

The article said careful discussion and engagement can help patients and their families identify deeply held values and personal perspectives, which lead to patient goals being identified. However, the current approach to measuring quality in health care delivery undervalues these goals and fails to integrate them.

“Although professional standards are important, they can fail to capture what matters most to each individual.”

Dr McCaffrey gave the example of patients placing high value on being able to finalise their affairs at the end of life; a fact demonstrated by Australian research she conducted which was published in PLOS ONE.

However, a focus on measuring clinical management of physical symptoms, in determining value-for-money, means these non-clinical outcomes – like being able to arrange funerals, write wills and advance care directives, and hand tasks to family members – are often overlooked.

She said policy makers needed to look to the Standards for Providing Quality Palliative Care for all Australians, published by Palliative Care Australia (currently under review) when comparing value-for-money of palliative care service delivery models.

“The first three of 13 standards talk explicitly about emphasising individualised and family-centred approaches to care. It gets down to the last three or four standards before talking about staff and service issues.

“We definitely need those standards to link more closely with outcome measures in value-for-money assessments in the palliative care setting.”

The Australian Commission on Safety and Quality in Health Care released a consensus statement in May describing the essential elements for providing safe and high-quality end of life care in Australian hospitals.

The statement, endorsed by all Australian Health Ministers, sets the principles and elements that shape the delivery of safe and high quality care. When the document was launched, Palliative Care Australia CEO Liz Callaghan said: “It is important that clinicians work closely with patients, families and carers to understand a patient’s wishes. This ensures making informed decisions about a person’s end-of-life wishes is easier on all involved in a very sad time.”

Last week Federal Health Minister, Sussan Ley, said residential aged care “needs to be the next area of reform” and there would be a rethink of what quality meant in this setting.

“Quality is really defined by the individual’s experience and expectations,” she said in a speech at the National Press Club in Canberra.

“I want Australia’s aged care system to have an approach to quality that understands and anticipates what’s important to the individual and then strives to exceed that.”