Nurses play a critical role in ensuring people with a terminal illness can achieve the best possible quality of life in the time they have left.
While specialist palliative care is provided by multidisciplinary teams, nurses routinely provide general palliative care in both acute and community settings, and can be influential in helping doctors negotiate patient referrals for specialist care.
However, in the UK each year around 110,000 people don’t receive the care they need - this needs to change.
A new Marie Curie report, Triggers for Palliative Care, identifies the barriers that result in patients missing out.
It concludes there is a general lack of awareness among health and social care professionals, as well as the general public, about what palliative care is, what it can achieve and when it should be provided.
“Most of us think palliative care is only for people who have terminal cancer”
Most of us think palliative care is only for people who have terminal cancer and even then, only when they are close to death. But it is actually about managing symptoms and enhancing quality of life for anyone who has a life-threatening or terminal illness.
Palliative care includes caring for people at the very end of life but can also benefit their quality of life in their final weeks, months or even years. While often perceived as “giving up” on a patient, it can be administered together with treatment aimed at prolonging life.
Marie Curie’s report also highlights that many of the people who are currently missing out on care have a condition other than cancer.
“Many of the people who are currently missing out on care have a condition other than cancer”
Research evidence shows that the majority of people who access palliative care services have a cancer diagnosis.
For example, a review of nine general practices in Scotland found that 75% of people with cancer had been identified as requiring palliative care, compared with just 20% of those with other conditions.
Recently we welcomed new guidance from the Royal College of Nursing to help nurses meet the needs of patients at the end of their lives. The guidance emphasises that a “one size fits all” approach isn’t appropriate and that decisions around palliative care should reflect the needs, as well as the wishes, of the individual patient.
“Decisions around palliative care should reflect the needs, as well as the wishes, of the individual patient”
Marie Curie agrees that we need to focus on the person, their experiences of their illness and their present need. But there is undoubtedly more work to be done.
The RCN’s survey confirmed there is a lack of training in the area among nurses, with 25% of those surveyed not having had specific training, either before they qualified or since they had started work.
To coincide with the launch of the report, Marie Curie has written to NHS medical and nursing directors, urging them to improve access in the hospitals they run and to ensure that all staff know when and how to refer someone to specialist palliative care.
“Identifying when palliative care is appropriate can be complicated”
Identifying when palliative care is appropriate can be complicated for some conditions where disease trajectory and deterioration is less predictable. For example, the symptoms that signal a person with heart failure may be reaching the stage where palliative care is needed may be different to the symptoms one would expect in a person with advanced cancer.
But one thing is clear - we need to be having more and earlier conversations with patients and their families to ensure that when it is needed, care is provided as early as possible and not just in the last few days of life.
“We need to be having more and earlier conversations with patients and their families”
There is understandably a reluctance and lack of confidence among health professionals to talk about palliative care, death and dying. While these conversations are by their very nature difficult, we must ensure that people are given the opportunity to discuss their wants and needs throughout their terminal illness.
Dee Sissons is director of nursing, Marie Curie