Experts estimate that about 11,000 people in Scotland could have benefited from palliative care at the end of their lives, but did not receive it.
Charities Marie Curie, Sue Ryder and Hospice UK are calling for an Anticipatory Care Plan which patients complete with their GP, recording their explicit wishes, to be added as a new indicator for reviewing end of life care.
The organisations said that measuring how many people had completed the plan provides evidence that people’s choices were adhered to and there was a greater likelihood of them having a “good death”.
The Scottish Government has recently committed to ensuring that by 2021 everyone who needs palliative care should be provided with it.
Elinor Jayne, policy and public affairs manager for Sue Ryder Scotland, said: “The indicators at the moment don’t tell us much about quality of care or how many people are accessing palliative care.
“We know there are around about 11,000 people who would benefit from palliative care but died without receiving it; we definitely want to see a big improvement in people accessing palliative care.
“For instance, if you have a diagnosis of cancer you are much more likely to enter palliative care services than somebody who doesn’t have cancer but has something that is ultimately going to result in their death. People with neurological conditions like multiple sclerosis one day that will probably kill them, but they may only access palliative care late in their journey.”
The organisations are proposing a main indicator that will ask: “Of those who died in the last year how many had an anticipatory care plan?”
The proposal will provide information regarding the percentage of people in Scotland who died, excluding sudden or unexpected deaths, who had an Anticipatory Care Plan. This measures how many people had conversations with health professionals about death and dying as well as how many people had their preferences recorded.
Richard Meade, head of policy and public affairs at Marie Curie, said: “We would love to see a substantial increase in the number of people getting an Anticipatory Care Plan to make sure they get the chance to discuss with their health and social care professionals what’s important to them in terms of their care and where they want to have their care.
“If they’re terminally ill and coming towards the end of life, things like where they might want to die, what kind of care they might need to enable that to happen and the chance to discuss and have it recorded so all the care professionals that come into contact with the person know about that plan and help make it a reality.”
Health Secretary Shona Robison said: “Our commitment to ensuring access to palliative care for all those who need it by 2021 is supported by £3.5 million over the next four years. We have also committed to doubling palliative and end of life provision in communities, so fewer people are dying in a hospital setting.
“We recognise the need to identify all those who need palliative care.”