Palliative care can incite fear, even at the mere proposition. Healthful individuals may tremble at the implications of a fatal disease, and certain medical practitioners can feel a sense of unease when discussing it with their patients. The concern is that it may be perceived as the medical professional resigning to the inevitability of death.
However, one group that is explicitly open to palliative care, and in fact, requires it as part of their treatment journey, are patients diagnosed with metastatic breast cancer.
Studies reveal that 83% of such patients are receptive to an early referral to palliative care during their treatment process. However, only a fraction of them – 20%, to be precise – actually receive one. The research was instituted by Cancer Trials Ireland and was led by Siobhán Gaynor and co-chief investigator and medical oncologist, Prof Seamus O’Reilly.
Gaynor, a scientist previously involved in cancer research, was diagnosed with breast cancer in May 2019. Later in 2020, after considerable treatment, she was informed that she had metastatic breast cancer – a condition currently labelled as incurable, although therapeutic developments are prolonging life expectancy.
Her research, distinctively designed by patients with advanced-stage breast cancer, explicitly for those having the same condition, marks the first patient-initiated study, executed with the rigour typically attributed to a clinical trial. The study encompasses the entirety of Ireland and was showcased at the American Society for Clinical Oncology conference in Chicago in May. The results underscore the critical need to value the insight of patients.
Even with the escalating knowledge about palliative care, several erroneous beliefs and misunderstandings persist. Due to insufficient palliative care resources, usually, the first encounter people have with such care is when their near and dear ones approach the end of life. Consequently, it is no wonder that many conclude its introduction indicates that all other forms of treatment have been exhausted.
Palliative care extends far beyond simply end-of-life preparation. It prioritises enhancing the living quality of patients and their families, focusing on holistically treating the individual as opposed to just their ailment. This form of care is known for its exceptional control of symptoms and pain, as well as its capability in addressing the existential distress that often accompanies a severe health diagnosis. The effectiveness of palliative care is amplified through the interdisciplinary teamwork involving chaplains, medical professionals, art therapists and social workers. Often, it offers precious time for patients and their families to grapple with the life-altering prognosis.
Substantial evidence supports the financial justification for investment in palliative care, as demonstrated by The Palliative Care Services Three-Year Framework (2017-2019). Oncology, particularly in Ireland, is treacherously complicated and demanding, making it challenging to deliver comprehensive care. Consequently, patients can feel unsupported and confused, as highlighted by Gaynor in an Irish patient-centred research video.
The Health Service Executive’s (HSE) official stance is that early palliative care leads to improved symptom management and complication prevention. Certain cancer groups have even seen prolonged life expectancy with early palliative care. Despite its evident benefits and the potential financial savings highlighted by Dr Peter May of Trinity College Dublin and King’s College London, early palliative care referral remains elusive. The medical field continues to operate in somewhat isolated silos.
However, promising recent changes have been instigated. In 2022, the American Society for Clinical Oncology launched programmes to merge medical oncology, haematology, and hospice and palliative medicine into one fellowship scheme.
Dr Fionnuala Crowley, a medical professional originating from Cork in Ireland, was honoured with the privilege of one of just four fellowships awarded in the first year, an opportunity she is currently availing at Icahn School of Medicine at Mount Sinai/Tisch Cancer Institute, New York, an exhilarating prospect indeed.
There’s a widely held belief that seeing an increase in Irish medics with dual specialization would be significantly beneficial. Even for those who won’t engage with multiple areas of specialism, encouraging increased interdisciplinary research could prove instrumental in dismantling counterproductive separations.
Understandably, palliative care extends beyond those living with advanced stages of cancer. There’s a desperate need for wider interdisciplinary collaboration, for instance, between specialists in geriatric and palliative care because guidance on symptom control and dealing with queries on life’s purpose are equally as pertinent.
The community that could profit from such an initiative is extensive, including sufferers of severe heart conditions, chronic obstructive pulmonary illness, dementia, Parkinson’s disease, and an array of other health complications.
The crux of the matter lies in what we consider important. This research has provided a platform for the voiceless patients. Therefore, it’s the responsibility of policymakers, healthcare personnel, and financial controllers to position early palliative care as a standard and focal practice within our healthcare system.