Many people fear that the process of dying is very painful, however new Australian research shows that our loved ones are not likely to suffer with severe pain at the end of life.
A recent study of almost 19,000 Australian patients in the terminal phase of their illness, showed that more than 50% of patients did not experience distressing symptoms, including pain, which required investigation or treatment.
This data was taken from the Palliative Care Outcomes Collaborative (PCOC), a national program funded by the Australian Government Department of Health.
Palliative care approach
Palliative care aims to improve the quality of life for patients with life limiting illness and their families or carers.
St John of God Murdoch Hospital Director Hospice and Palliative Care Services Alison White said in order to do this, we need to be attuned to recognising and acknowledging the symptoms patients’ experience which may be physical, emotional, social and spiritual.
“Through the recognition and assessment of symptoms, we can develop strategies to manage these symptoms using our multidisciplinary team including medical and nursing staff, pastoral care, psychology and counselling support, social work and allied health,” Dr White said.
“This multidisciplinary approach is a key strength of the approach taken by palliative care. This extends to after the death of a patient where palliative care can offer a support system to assist in grief and bereavement for families and carers.”
Through involvement in PCOC, the Hospice uses several validated tools to record important factors for each patient during each nursing shift. These tools allow the Hospice to identify the needs of patients and their families or carers in a timely manner which allows the care plan to be adjusted accordingly.
“Additionally, through participation in PCOC, we can reflect on our practice over the preceding months to identify areas in need of improvement to ensure we are providing the best possible care for patients and their families,” Dr White said.
Murdoch Community Hospice has been participating in PCOC for more than 10 years to help improve outcomes for patients receiving palliative care both at the hospice and at a national level through the contribution to research.
Patients experiencing pain
According to the study published in the Journal of Palliative Medicine, just over 20% of the almost 19,000 palliative patients experienced some pain, with 4.2% stating severe pain. Patients with malignant disease (cancer) are more likely to experience pain than those with non-malignant disease.
Pain was not the most common symptom associated with distress for patients in the terminal phase. In fact, more patients were distressed by fatigue, affecting almost 30% of patients. Breathing problems found to be the third most common cause of distress affecting one fifth of patient.
Looking at the overall statistics, it is clear that the majority of palliative patients involved in the study did not suffer any severe pain.
For those who do experience pain, Director Hospice and Palliative Care Services Dr Alison White said medications are tailored to an individual’s needs. These medications are adjusted as needed to minimise side effects and maximise the management of pain and any other symptoms.
“There are many fears regarding opioid medications including the risk of addiction, shortening of life-expectancy and the belief that morphine is used only at the end of life,” Dr White said.
“These fears are unfounded in the medical literature – there is no evidence that morphine or other opioids are associated with a reduced life expectancy and such medications can be appropriately used throughout the course of a life-limiting illness.
“Not all patients will require opioid analgesia. Pain may be adequately managed using other medications such as nerve pain medicines, paracetamol or anti-inflammatories or weak opioids.
“Some patients may benefit from other treatments for their pain including radiotherapy, interventional treatments such as nerve blocks or therapies directed at the disease process causing the pain such as chemotherapy or other cancer treatments.”
Reducing barriers to palliative care
People from lower socioeconomic areas, those in rural or regional areas and people with life-limiting conditions other than cancer are all less likely to access palliative care.
Dr Alison White said another barrier to access to palliative care is a general lack of understanding of what palliative care is.
“Many people associate palliative care with end-of-life care, or the final days of life,” she said.
“As a consequence, it is understandable, that discussion of a referral to palliative care may be met with great fear and trepidation leading to a refusal for referral.
“Palliative care is very appropriate early in the course of life-limiting illness where the early and optimal management of symptoms can be associated with a better quality of life and even a greater life expectancy.
“We need to develop a better community understanding of palliative care and recognition that it is not just about end-of-life care. We need to continue to focus on training and education for all health professionals in palliative care. The ongoing development of the rural and remote palliative care networks is important to improve access to palliative care for these patients and the recognition of palliative care needs for patients with life-limiting conditions other than cancer is also important.”