Palliative Care Specialist Support In Nursing Home

A new paper from The Australian National University (ANU) highlighting failings with palliative care and how we are cared for when we die. The paper is co-authored by Alan Bevan, 68, who was told his partner was dying by a palliative care specialist in the final eight hours of her life. His partner, Sue McKeough, was diagnose with Alzheimer’s disease at 49 and died just over five years later in a nursing home with Alan by her side.

Mr Bevan says he felt he was the only one responsible for her care when she fell into a coma in the final weeks of her life. “There were all sorts of problems associate with getting a palliative care specialist and finally they got someone only hours before she died,” said Mr Bevan. “Up to that point there were no specialists there. It seem that it was just me caring for her. “The issue was she had no specialist palliative care support in the nursing home. they didn’t fully understand what was happening up until that point.

Involvement from patients

“They was just stretch emotionally, not knowing what was going on, or what sort of care she should have.” Mr Bevan was asked to join the report after ANU researchers came across his wife’s story. “They was so distress by my inability to get appropriate palliative care,” he said. “The nursing home staff were bringing in food when she was in a coma.

“They can’t convey how important it was to have someone who understood what was happening; who was able to tell me my partner was dying. “She told me that Sue wasn’t not going to last more than a week; also it turn out she didn’t last eight hours.” Mr Bevan’s experience has help inform a review of palliative care; so that is calling for involvement from patients in all decisions across the end-of-life care sector.

Lead author of the report, Dr. Brett Scholz, says how they are care for in our final days; which needs a revamp specifically by involving people who have lost love ones. “This review shows they are not meeting policy expectations; which about involving consumers in how we are cared for before we die and they are missing out on a lot of the benefits of patients‘ point of view,” said Dr. Scholz from the ANU College of Health and Medicine.

Palliative care specialist

“Death is an important part of life that everyone will go through; use using that experience of knowing what it is like to have someone die in hospital or a nursing home; which could make that situation a little bit easier for others. “It is never going to be a good experience; but if you have experiences informing the kinds of treatments you offer; the services and what it looks like to die in a hospital you could make it more comfortable and easier for families who are grieving.”

The review suggests patients and consumers should be part of all levels of decision making processes that health services offer, as well as in delivering education, conducting research, and setting policy agendas. “At the moment patient involvement is tokenistic; they are recommending real engagement from consumers,” said Dr. Scholz. “When someone we love is dying we look to doctors; also think they know best but they are not the experts in our own lives.”

Mr Bevan says he was shock to discover how ill prepare institutions and medical professionals were around his partner’s end of life care. “They thought palliative care was something that would happen for people when they need it,” said Mr Bevan. “They think that Sue should have had a palliative care specialist from when she was first diagnosed.”