Diabetes clinicians are missing out on opportunities to talk to their patients about end-of-life care because they are not aware that palliative care is no longer a synonym for hospice care, Australian researchers say.
In an article published in Current Diabetes Reports, researchers said that currently, diabetes clinicians rarely proactively initiate discussions about palliative care with people with diabetes or refer them to palliative or end-of-life care experts until late in the course of diabetes.
Often this happens “at the end stages of life when people’s decision-making capacity is compromised.”
“The ideal time to discuss palliative and end-of-life care is early in the course of diabetes when people are better able to make informed decisions,” they wrote.
“Clinicians must become proficient at recognising when people with diabetes are ready to discuss these issues. Importantly, discussion should ideally occur when the individual’s blood glucose is stable.”
While general end-of-life care guidelines apply to diabetes, they said there were some diabetes-specific issues that need to be considered, including the usual long trajectory to end-of-life care that enables clinicians and people with diabetes to proactively discuss when to change the focus of care from preventing diabetes complications (tight control) to a palliative approach.
“People with diabetes usually have a relatively long, unpredictable disease trajectory that includes periods of declining health and periods of sudden severe illnesses accompanied by hyperglycaemia or severe hypoglycaemia (unstable diabetes) that often require hospitalisation,” the authors wrote.
“Hospital admissions can lead to invasive, burdensome interventions, often in intensive care units, that may not be beneficial and can compromise safety and quality of life especially in the last week of life.”
However they said this very unpredictable disease trajectory to end of life could lead to missed opportunities to discuss palliative care and unnecessary interventions. A hospital admission could represent an opportunity to revise the care plan and discuss the changing health status with the individual.
“Some diabetes-specific triggers that could indicate when the focus of care could change from usual care to a palliative approach are not included in most current diabetes or palliative and end-of-life guidelines,” they wrote.
“Consequently, such triggers are relatively unknown or not considered. Therefore, it can be difficult for clinicians and older people with diabetes/ families to decide when to initiate conversations about palliative and end-of-life care.”
Lead author, Deakin University researcher Professor Trish Dunning, told the limbic that while palliative care was not a new term, it was definitely evolving as more than just care provided at the final stage of life.
And while she said there was a groundswell of changing attitudes, there was still a long way to go for patients and health professionals to fully understand its importance and the need to start planning soon after diagnosis if possible.
“There are stages in the dying process that aren’t covered in palliative care as much as they should,” she said.
“We know that early palliative care leads to better symptom management and quality of life. We just need to change the mindset of people that by getting early palliative care it must mean they are dying.
“We haven’t sold some of these messages very well and end-of-life care is one of them.”
“That is, palliative care can be integrated with usual diabetes care early in the course of diabetes, including at diagnosis,” they wrote.
“Many clinicians indicate they lack the skills and time to discuss palliative and end-of-life care and to judge when the ‘time is right’. Significantly, people may suffer unnecessarily if care is not reassessed when the disease trajectory changes, especially at the end of life.”
Professor Dunning said by focusing on palliative care as a tool that improves patients’ quality of life when they live with a life-threatening incurable illness by relieving suffering, promoting comfort and managing symptoms, it was far easier to engage with the individual and their carer/family.
“There are times in a person’s life when they want to talk about it,” she said.
“Our focus is on cure, but we can’t cure diabetes at the moment, and it’s important that people understand the likely progression of their disease over time, with a focus on achieving the best quality of life possible.”
The authors said clinicians caring for people with diabetes approaching the end of life were in an ideal position to help their patients make management decisions.
“Each clinical contact represents an opportunity to discuss important issues including palliative and end-of-life care and to monitor whether the person’s preferences change over time,” the authors said.
At present, most of these opportunities are missed because many diabetes clinicians are not aware that palliative care is no longer a synonym for hospice care and are reluctant to discuss death and dying.
“In addition, some clinicians worry about their obligations to comply with legal requirements and codes of practice regarding care and advocacy. Proactive, informed end-of-life care planning can help clinicians meet these challenges.”