Palliative care started millennia back in various forms as human beings had a natural instinct to care.
It was initially taken up by religious orders and people from parishes looked after ill, destitute and dying patients.
In last century, with advent of the hospice movement, hospices mushroomed around the developed world.
They had a model of multidisciplinary team which was backed up by multidisciplinary education in those countries.
Doctors and nurses worked with social workers, allied health professionals, psychological services, religious clerics and were backed up by charity trusts and larger society.
With time, various protocols were developed which helped delivery of palliative care. These included preferred place of care, Gold Standards framework etc.
However, with larger society challenges including changing age, cultural demography and high turnover of staff, the specialty struggled to keep up with its task of educating other specialities.
In the meantime, developing world was following progress in these fields and quite often, they were trying to replicate models in west.
This led to multiple challenges which were:
- Specialist Palliative care provision and training circled around more specialism with a capital ‘S’ and less care with small ‘C’.
- Doctors and nurses often started relying on their clinical skills and struggled to develop social, psychological or spiritual skills. Other specialities also looked at palliative care as a resource which looked after all ‘problems around dying’, rather than developing their own skills.
- There was obsession of gathering data around death which usually addressed death in a particular area with its own clinical facilities, social set up, cultural boundaries and legal restrictions.
- Palliative care always took pride in pushing boundaries and developing models around patients, but in recent years have struggled to keep up.
- This meant that developed world has not been able to develop a model for developing world. This led for those countries to adapt to trial and error their models.
After more than half a century, we have learnt the lesson that death and dying are very much evolving processes and are society and cultural related. We need to make some progress to achieve:
- There must be strategy to develop acceptance and also comfort about idea of death and dying among professionals. That will help have honest and open discussion and ultimately lead to good care. It will help avoid all professionals to get away from idea of asking about only pain and vomiting etc. and drive them to ask how patients really feel and make them listen to what patients are NOT saying.
- Professionals need to understand that power of psychological suffering driving symptoms to be worse and learn strategies to deal with it.
- Professionals have a lot to learn from our senior patients. Death is an alien idea for practitioners as many of them have not lost any close loved one, but these patients have lost their parents, siblings, partners etc., and have few things to share with us in terms of resilience.
- We need to empower families to seek help by talking about mental distress more. Patients die but families don’t and they have to love with that experience for some time. All professionals must develop some skills to support those families and carers.
- Professionals around the world need to appreciate that death in a culture is not the same as other cultures. Even within a family that will be different. We need to learn the language about ‘What does it mean for you?’ and ‘What makes you think like this?’
Bad deaths are usually outcome of patients’ not having full trust in system. A good multidisciplinary team helps address that but a professional with empathy, patience and courage can address that much quicker.
Dr Qamar Abbas is Medical Director & Consultant in Palliative Medicine at St Clare Hospice at Harlow, Essex. He is also a Senior Clinical Tutor at University of Cambridge and Associate Lecturer at Anglia Ruskin University, Chelmsford
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