World Palliative Care day: Living and dying in pain
Fondly called 'amma', she is 65-years old and terminally ill with breast cancer. Photograph: (WION)
A classroom session on palliative care for doctors and nurses was just about to begin. The theme was 'patient-centered care'. Before the session even started, Katherine Pettus, a visiting lawyer from the USA with a commitment to palliative care, asked in wonder, ‘Why that title? What else could any care be, if not centered on the patient?’
As medical and nursing professionals in palliative care, we have taken it as pretty much the routine to discuss patient and family-centered care as an entity distinct from disease-focused care. When confronted by Katherine’s question, my colleagues and I found it difficult to give a nice crisp answer to her. On reflection, we understood her bewilderment.
What we tried to convey at length to Katherine were: yes, care should always be patient and family centered and yes, it is not logical to have it any other way. But, very unfortunately, a deviation from that obvious focus is what has happened to medical science and practice, especially in the last half a century. Gradually, with our improving ability to identify diseases precisely, down almost to the last cell, the emphasis on technology increased, almost obliterating the patient to insignificance.
Also, specialisation and super-specialisation grew. Medical science being so vast, doctors could not possibly learn in-depth about the whole human body. Super-specialisation in medical science was, therefore, inevitable for precise localisation and accurate targeting of disease processes. Slowly, but surely, in a quarter of a century, medical students and young doctors learned to look at images and test reports more than at the person.
Consequently, the doctors have stopped touching the person. Why should they, when the MRI scan showed the details? The iconic stethoscope gradually became less and less relevant and crawled out of doctor’s necks to the nurses’.
Doctors went on imaging the organs and studying the chemistry of the blood even when the person was so obviously dying from an incurable disease. The dying process lost all the dignity it could have when one departs surrounded by the loving family; instead, death became ugly in an air-conditioned nightmare of ventilators, alarms and isolation.
The trouble is, a human being refuses to be broken down into components like a machine. Leave alone the fact that we do not understand enough about the components, there is the troublesome problem that there is this little-understood thing called mind. We know so little about it and to our constant annoyance, we doctors find that it has too much effect on the body. We try to ignore it and try to get away by saying, ‘it is all in your mind’. But the problem persists.
In the 1960s, a British nurse-turned social worker-turned doctor by name Cicely Saunders found that medical science was already concentrating too much on diagnosis and cure. She started looking at people who seemed to be most neglected - the dying. Her work eventually brought in the concept of palliative care. It acknowledges that there is more to a human being approaching a hospital than just diseases.
The fact that doctors wanted to deal only with curable diseases, and not with suffering dying human beings was repugnable to Cicely Saunders. She brought in the concept of total pain – that suffering in the presence of disease is a conglomeration of physical symptoms (like pain or breathlessness) and emotional, social and spiritual factors. Perhaps, if Cicely Saunders lived in a poorer country, she would have brought in financial suffering also. We manage to club it under social suffering, even though financial ruin is often is a predominant source of suffering for the person and family.
The World Health Organization (WHO) has taken into consideration these multiple nuances of a terminal disease affecting a person and the person's family. According to the current definition provided by WHO, palliative care is seen as an approach ‘…that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.’
Along with the patient, palliative care also came to focus on families of people with diseases – the haggard looking, exhausted, voiceless humans who crowd hospital corridors and try to hover around the patient in face of armed guards trying to keep them out. Cecily Saunders recognized their suffering and was brave enough to proclaim that care should reach them also.
Today, palliative care is a growing field globally. Most developed countries have ensured access to it as a matter of right. Developing countries are adopting it, though in a much slower process. At least, when they don’t, it is attracting global attention. The Economist Intelligence Unit, in their report of 2015, shamed India as it came among 15 worst countries to die in among 80 studied.
The same report however, singled out Kerala as a beacon where palliative care is available to a large number of people. A movement that started in early 1990s in Calicut in Kerala, where community volunteers joined medical professionals to ease suffering of people with life-limiting diseases. The movement took Kerala by storm. In 1998, Government of Kerala created a policy ensuring its presence in the healthcare scene. As of December 2015, 167 institutions in Kerala have palliative care satisfying one minimum criterion, namely, access to oral morphine for pain relief. Essentially, this policy set out to achieve what the world at large declared in a resolution of the World Health Assembly (the decision-making body of the World Health Organization) in 2014 – that all member countries of the UN should integrate palliative care into their health care systems.
Such integration of palliative care in health care mandates some pre-requisites - apart from the recognition and a declared policy by the medical system that it must acknowledge and treat suffering as an entity and not just the disease process. It must study and practice assessment and management of pain and other symptoms. Like Katherine, many non-medical readers among you may not find it easy to believe me when I say that the medical student in India does not learn to assess and treat pain. Or other symptoms. Yet that is the truth.
Medical students learn precise diagnosis and cure – both the theory and practice. As a medical student a long time back, almost unconsciously from my medical teachers, I learnt the art of ignoring pain and suffering and of walking away from the scene of suffering in incurable diseases. Half a century later, the medical student still does. Without any doubt, the situation has to change.
Saturday, the 8th of October 2016 is World Palliative Care day. The theme for the year is ‘Living and Dying in Pain – it Does Not Have to Happen’. Indeed. Palliative care is low-cost. It is not a question of affordability. In fact, a low-middle income country cannot afford NOT to have palliative care.
There is a lot of touch in palliative care; and holding hands. But there is also science. That combination is what I would like to have when my time comes – care with compassion and competence in equal measure.