Adding Life To Days

Mr. Bilal (Name Changed), a 42-year-old man residing in a semi-urban area, faced a life-altering event two years ago when he became paraplegic due to a fall from a construction site. Despite undergoing surgery, he did not regain power in his limbs, and doctors conveyed that his condition was irreversible. Since then, he has been bedridden, experiencing frequent fever attacks and developing painful bed sores with foul-smelling discharge. His distress is exacerbated by the belief that “nothing can be done.”

Challenges Faced by Mr. Bilal:

1.
Physical Distress and Disability: Mr. Bilal experiences severe physical distress due to his paraplegia and the inability to lie supine comfortably.
2.
Psychological Impact: He grapples with emotional distress, feeling isolated, and considering himself a burden to others.
3.
Financial Strain: Medical expenses during episodes of illness add to his distress, contributing to worries about financial burdens.
4.
Social Isolation: The foul smell from his wounds further isolates him, leading him to avoid social interactions, even with old friends.
5.
Anger and Spiritual Distress: He feels unjustly treated by God, leading to anger and spiritual distress when interacting with sympathizing individuals.
6.
Desire for Contribution: Despite his condition, he is desperate to contribute to family expenses and resume a meaningful role.
7.
Suicidal Thoughts: He battles with thoughts of suicide as a potential solution to end his misery, further intensifying his emotional turmoil.
The case raises questions about the responsibility of healthcare systems for patients who cannot be entirely cured. There is a need for care beyond disease-centric models, especially for those with long-term, progressive, or incurable illnesses.

Understanding Palliative Care:

Palliative care, focusing on physical, emotional, social, and spiritual well-being, addresses the gaps in ongoing care for such patients. The term “palliate” stems from “pallium,” meaning a comprehensive care that shields patients from distressful symptoms when a cure is not possible.
Historical Context: Ancient traditions in India reflect a concern for special care for the elderly, ailing, or dying. The modern hospice movement, credited to Dame Cicely Saunders, began with the establishment of St Christopher’s Hospice in London in 1967. Palliative care, influenced by Dame Cicely’s multidisciplinary background, evolved into a holistic approach to patient concerns.

What is Palliative Care /National Programme for Palliative care(NPPC)

Key points in the NPPC approach
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provides relief from pain and other distressing symptoms;
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affirms life and regards dying as a normal process;
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intends neither to hasten nor to postpone death;
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integrates the psychological and spiritual aspects of patient care;
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offers a support system to help patients live as actively as possible until death;
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offers a support system to help the family cope during the patient’s illness and in their own bereavement;
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The palliative approach comes early in the course of an illness, not just as end-of-life care.
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There is an emphasis on impeccable assessment, early identification of problems and implementation of appropriate treatments.
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The care runs in conjunction with disease modifying treatments such as chemotherapy and radiotherapy
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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 conventional medical care. The aim of palliative care is not to lengthen – or 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 beginning is by focusing on what we can do to care, rather than being 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.

Dr Syed Arif Hussain is a Consultant Anesthesia and Pain Specialist, Incharge Pain and Palliative Care, Govt JLNM Hospital, Rainawari