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SCIENTIFIC advances mean the number of people living with and dying of chronic diseases (heart disease, stroke, cancer, diabetes and chronic respiratory diseases) has vastly increased.
Cancer, for example, once considered an inevitable death sentence, is now a chronic disease where individuals can live for decades in remission and often for many years with metastatic disease.
Yet, people with chronic diseases experience complex and increasing physical, psychological, social and spiritual consequences of their condition and its treatment. Many need help to minimise their suffering.
Supportive and palliative care is designed to prevent, control, or relieve complications and side effects of disease and illness to improve the patient’s comfort and quality of life.
While palliative care focuses on patients with life-limiting disease, it is now recognised that “early” referral to specialist palliative care is optimal, not only because it means patients are already linked to the service when they are close to death, but because many symptoms and concerns that occur long before death are best addressed by palliative care specialists.
Unfortunately, palliative and supportive care are poorly understood and stigmatised within the general community. The federal Department of Health and Ageing begins its webpage on palliative care with the words: “A person receiving palliative care will have an active, progressive and far-advanced disease, with little or no prospect of cure”. This implies that those not immediately dying should not access this care.
The very words “palliative care” can strike terror into the hearts of many patients who are offered this service, as they assume it heralds approaching death. The referral itself becomes a trauma for both the patient and their family, and for the treating doctor. Patients sometimes also reject referral to psychosocial health professionals, as they do not want to be seen as mentally weak or poor copers.
The end results for those who could gain the most benefit from palliative and supportive care are under-referral, poor uptake and unnecessary suffering.
There is an urgent need to change community perceptions of these services, to allow them to maximise their usefulness throughout the disease trajectory. Palliative care trainees now receive specific training in introducing themselves and the service to minimise patient anxiety and facilitate openness to accept care.
But enabling palliative care to reach its full potential will take more than changing community attitudes and improving the training of palliative care clinicians.
Since US President Richard Nixon launched the “War on cancer” in 1971, cure is the only outcome considered worthy of support. Efforts in both prevention and palliative and supportive care have suffered as a result.
Palliative and supportive care are undervalued and underresourced by funding bodies, particularly research and clinical services. Many patients do not have access to needed services, while the evidence base for much-needed interventions grows slowly in the absence of adequate funds.
While we wait for elusive cures for chronic diseases, we must ensure that we also put funding and effort into reducing unnecessary suffering in those already living with chronic and terminal diseases.
Professor Phyllis Butow is the chair of the national Psycho-Oncology Co-operative Research Group, University of Sydney.
Posted 4 February 2013