Even the thought of palliative care can cause fear. The healthy may shudder at the connotations of a terminal illness, while some doctors are uncomfortable with raising it with patients. They fear the patient will see it as their doctor giving up hope.
But you know who is not afraid of palliative care, and who actively wants it to be part of their treatment? Patients with metastatic breast cancer.
Research shows 83 per cent of them are amenable to a palliative care referral early on in the course of their disease but only 20 per cent receive one. The research was conducted by Siobhán Gaynor and co-chief investigator and medical oncologist, Prof Seamus O’Reilly, under the auspices of Cancer Trials Ireland.
Gaynor’s interest is personal. A scientist who worked in cancer research, she was diagnosed with breast cancer in May 2019. After undergoing extensive treatment, the mother of three was diagnosed with metastatic breast cancer in October 2020. It is not currently considered curable, although therapeutic advances are extending lifespans.
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Uniquely, the research was designed by patients with advanced breast cancer for others with the same condition. This is the first patient-led research conducted with the rigour normally associated with a clinical trial. It covers the whole island of Ireland.
The findings were presented in May in Chicago at the American Society for Clinical Oncology conference. The results demonstrate how imperative it is to hear patients’ voices.
Despite continuing growth in knowledge of palliative care, there are still many misconceptions and misunderstandings about it.
Due to the lack of palliative care resources, the first interaction most people will have with it is when their loved one is reaching the end of life. As a result, it is not surprising that some people believe that it only comes into play when all other treatment options have failed.
Palliative care is so much more than end-of-life. It emphasises improving the quality of life for both patients and their families by focusing on the whole person rather than only their disease.
For example, palliative care teams excel in symptom control and pain management, and also, managing the existential crisis that often results from being told that you have a life-limiting illness. The strength of palliative care comes from working as an interdisciplinary team, which may contain chaplains, expressive art therapists and social workers, along with medical experts.
Time can be given to patients and their families to come to terms with what is often a shattering diagnosis.
The economic case for investment in palliative care is well established, evidence-based and firmly grounded
— The Palliative Care Services Three-Year Framework (2017-2019)
The diagnosis and treatment of cancer have never been more complex and demanding, particularly in Ireland, where oncologists have very heavy caseloads. It is tough to provide all-encompassing care in those circumstances.
As a result, patients can feel adrift. As Gaynor says in the video introducing the Irish patient-centred research, she knows what it is like “to feel like the health system maybe focuses more on the problems it can fix, versus the ones it can’t”.
It is the HSE’s official policy that providing palliative care at an early stage can lead to better management of symptoms and avoid complications.
In addition, early palliative care has been shown to prolong life in certain cancer groups.
But it is still not happening.
It even makes financial sense to refer early. The Palliative Care Services Three-Year Framework (2017-2019) found that “the economic case for investment in palliative care is well established, evidence-based and firmly grounded ... This leads to cost savings within acute hospitals, as well as a reduction in inappropriate hospital admissions, a more appropriate care pathway, and an improved experience for patients and their families.”
More recent research by Dr Peter May, a research scientist at Trinity College Dublin, and King’s College, London also found that there are considerable savings from earlier referrals to palliative care.
But medicine still tends to exist somewhat in silos.
Aware of this, in 2022 the American Society for Clinical Oncology instituted programmes to combine medical oncology, haematology, and hospice and palliative medicine into a single fellowship.
Dr Fionnuala Crowley, an Irish doctor from Cork, was granted one of only four fellowships in the first year and is pursuing it at Icahn School of Medicine at Mount Sinai/Tisch Cancer institute, New York. It is an exciting opportunity.
It would be wonderful to see more Irish doctors who are dual-trained. But even for those who will never pursue a joint speciality, moreresearch between disciplines would help break down unhelpful divisions.
Of course, palliative care is not just for people with advanced cancer. Many more interdisciplinary connections are needed between, for example, geriatricians and palliative specialists, because symptom management and existential questions of meaning are just as applicable there.
The list of those who could benefit is long – people with serious cardiovascular conditions, chronic obstructive pulmonary disease, dementia, Parkinson’s disease, and many others.
It is all about what we prioritise. This research has given a voice to patients. It is now up to policymakers, medical professionals and those who hold the purse strings, to make early palliative care normal and central in our health system.