New York based Dr Diane E. Meier delivered her lecture on ‘Can (or should) palliative care meet the challenge of care for persons with long-term chronic illness versus remaining in our end-of-life corner?’ to the audience at Cicely Saunders Institute in London, as well as to the locations around the world tuning in via video link, last week.
“We (those committed to palliative care) are not the audience,” Dr Meier said.
“Our audience is people who don’t know about palliative care, don’t particularly care about it, and hope never to meet it. Unless we turn outwards to understand those audiences and what is important to them, we will not see any behaviour change.”
The director of the Centre to Advance Palliative Care, director of the Lilian and Benjamin Hertzberg Palliative Care Institute, Professor of geriatrics and internal medicine and Catherine Gaisman Professor of medical ethics at Mount Sinai School of Medicine in New York said there needs to be a fundamental shift in the palliative care message.
Dr Meier said that the palliative care sector has created a self-imposed barrier to reaching the target audience and suggested that ‘care of the dying’ should be changed to ‘improving quality of life for those living with serious illness’, separating palliative from end of life care.
In his introduction to the lecture, chairman of the Cicely Saunders International board of trustees John McGrath spoke of a similar concept when describing the Buildcare programme run by the institute.
“The goal is to Improve care for patients and families with progressive illness …through the best research and discovery,” Mr McGrath said.
Dr Meier said that during the time since palliative care started in the western world, the world has dramatically changed but the healthcare system has not redesigned itself to the new needs.
“The palliative care movement has made huge progress in shifting the healthcare system to asking what is important to people,” she said.
She said the first and most important thing is to acknowledge what is important to the patient and show people that the family is critical, quoting the phrase: ‘Don’t ask what is the matter with me, ask what matters to me’.
Dr Meier showed that studies have seen that independence ranked highest in a list of priorities for people toward the end of life, whereas ‘staying alive’ was the lowest priority.
Asking what is important to the patient and the patient’s family should be the main goal and first step, and palliative care professionals need to acknowledge that carers/caregivers take on the majority of the ‘burden’. There is a need to recognise that families take the brunt of care and that palliative care is just an “added layer of support”. She said families need help if “we are going to honour people’s goals (and reduce cost)”.
Dr Meier spoke of the need to make the public aware that palliative care treats the person, not just the disease, and produced evidence that definitions of palliative care that resonated with the public included:
- specialised medical care for people with serious illness and their families
- focused on improving quality of life as defined by patients and families
- provided by an interdisciplinary team
- any age, age diagnosis, any stage, at the same time as curative and life lengthening treatments.
Life expectancy is increasing and dementia, frailty and comorbidities are considered to be the biggest ‘killer’ of people into the future.
“Preventative measures allow us to live longer – the expectation of a long life has been normalised,” according to Dr Meier. “There is a high concentration of spending on older adults and the rise in healthcare spending is squeezing out spending on other social goods.”
She said people are asking: ‘Why are we spending so much on people in the last year of their life?’. And it is a system that is set up to force people to end up in an acute care setting (eg emergency room at hospital) because there is usually no alternative for them, despite it being the most high cost and low value form of intervention possible, according to Dr Meier. She said there is too much use of critical care resources on people who are dying, when palliative care services should be available to them.
Palliative care has been proven to improve quality of life, reduce major depression, and even increase survival. Dr Meier said the key to improving access to palliative care is to train the generalists and redesign the system. She praised the work being done in the UK, particularly the GPs 1% programme but warned against the use of the term ‘dying’.
“We have got to train generalists. If there is any universal need in healthcare, it’s that,” Dr Meier said. “We need the skill sets of geriatricians … and of palliative care, and they need to be brought together and aligned.”
Principal and president of King’s College London, Professor Sir Rick Trainor, said the lecture by Dr Meier was “a wonderfully systematic exposition of a really important argument”.
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