World Hospice and Palliative Care Day: Together for Palliative Care

World Hospice and Palliative Care Day is observed to raise awareness about compassionate care for those facing life-limiting illnesses. It highlights the right of every person to live and die with dignity, comfort, and support. This day honours patients, families, and caregivers, and promotes access to palliative care for all. Together, we spread the message: “Compassionate Communities: Together for Palliative Care.”

Mr. Yaseen (name changed) is a 45year old man who lives in a semi urban area. Two years ago, he had a fall from the construction site following which he became paraplegic. Post-surgery he has not regained power in his limbs. Doctors have told him that it is no more reversible. He was also told that “nothing can be done. He has been bedridden since then, has repeated attacks of fever and several bed sores. The wounds have foul smelling discharge and are gradually increasing in size. He cannot lie supine comfortably. He is in severe distress and has nowhere to go for his further medical care. What do you feel regarding the remark that ‘nothing can be done’. He is distressed due to his physical disability, pain and repeated febrile illness and is greatly distraught with the medical expenses incurred during these episodes. Now, he feels isolated and a burden to everyone; he shuns company and refuses to meet even his old friends. He is also distressed by the foul smell from his ulcers. He is angry, and feels that God has been unjust to him especially when he interacts with others. He finds their sympathizing attitude most distressing. He is desperate to start earning, contribute to family expenses and get back to his role. He is worried, unable to sleep and often considers suicide as a solution from this misery. Then he worries about what might happen to his family after he is no more.

All over the world, even in places where there are many healthcare professionals, plenty of drugs and the most modern equipments, there are patients who cannot be totally cured. Aren’t these patients also the responsibility of the health care systems? Where can they go with their problems? What can we offer in terms of care for them?

World Health Organisation defines health as well-being at physical, emotional, social and spiritual dimensions.

Palliative Care may be a new term for many of you, but it is a global movement to emphasize and assure ‘quality of life’ and the ‘care component’ within the healthcare sector. Presently most of our health services are disease centred; specifically designed for acute episodic care.

The huge need for the ongoing care for those who have long term diseases, progressive diseases or incurable diseases are unmet within the current healthcare delivery system

The word “Palliate” is derived from the Latin word ‘pallium’ meaning cloak i.e., an all-encompassing care which “cloaks” or protects the patients from the harshness of the distressful symptoms of the disease, especially when cure is not possible. It is person-focused and seeks to address the issues which are of most concern to the patient at that stage. Palliative care is not really a new speciality. Care of the sick has been a constant concern of human society throughout history. We have ancient traditions in India, for special care and attention for those who are very old, ailing or dying.

The modern hospice movement is attributed to Dame Cicely Saunders who founded the first modern hospice - St Christopher’s Hospice in London in 1967. Dame Cicely was triple-qualified professional, having practised as a nurse, social worker and doctor. This background influenced and impacted the way she approached her patient’s concerns. This led to the development of modern palliative care with its holistic dimensions.

The palliative approach comes early in the course of an illness, not just as end-of-life care. There is an emphasis on impeccable assessment, early identification of problems and implementation of appropriate treatments.

The care runs in conjunction with disease modifying treatments such as chemotherapy and radiotherapy. Palliative care can be provided in any setting – in hospital, out- patient or as home based care. There is an emphasis on a team approach to care.

What is different about palliative care?

Usually, healthcare professionals tend to focus mainly on physical problems – organs and their diseases. Palliative care recognizes that people are much more than organs put together; their minds, spirits and emotions are all part of who they are. It also recognizes the families and communities to which they belong. So the problems facing a sick person and their family are not just physical in nature; there may be psychological, social and spiritual concern which are just as important. Sometimes problems in one area may worsen others e.g. pain is often worse when people are anxious or depressed. It is only when we address all these areas that we are helping the whole person. It is this holistic approach that distinguishes Palliative care from the conventional medical care. The aim of palliative care is not to lengthen – nor shorten – life but to improve quality of life so that the time remaining, be it days, or months, or years, can be as comfortable, peaceful and fruitful as possible.

Like Mukhtar (name changed) many patients with life-limiting illnesses have so many problems that doctors can feel overwhelmed and powerless to help. Important is to begin by focusing on what we can do to care, rather than be discouraged by what we cannot cure. A professional who understands the “care” concept would not say, “there is nothing more I can do” instead would seek to find things to do for the patient, so as to relieve suffering and improve the quality of life.

Syed Arif Hussain, Consultant Anaesthesia and Pain Specialist, Govt JLNM Hospital Rainawari, Nodal Officer National Palliative Care Prog.