BENGALURU: Sometime in the late 1990s, the famous psycho-oncologist Buckman said that there was one missing chapter in Harrison’s Textbook of Internal Medicine. The missing chapter was, “What do you do when all the treatment advised in all the other chapters fail?” – Palliative Care is that missing chapter.
Palliative care is the active total care of the person with life-limiting illness. It includes active management of physical symptoms and at the same time emotional, social and spiritual problems are addressed.
The focus of interventions is not the patient alone but also the family. It is both patient-centric and family-centric intervention.
A home based approach to management of people with terminal illness helps to understand the situation better and provide guidance and support to patient and also their family.
Kumar (name changed) is a person with Carcinoma of Pharynx (Cancer of throat) and also HIV positive on treatment. He had undergone tracheostomy (opening in throat to facilitate breathing). He was bedridden, full of pain and very poor general condition. The home visit by our team helped to identify two important hurdles in the patient care, one is severe pain of the patient and second neglect by
the family.
The neglect by family was because of lack of knowledge and fear in the family member’s mind about the condition of the patient. The physical pain was effectively managed by oral morphine tablets and family members were advised about the condition and also trained at home itself regarding management of the patient. As a result of efforts at the palliative care unit run by Swami Vivekananda Youth Movement (SVYM) the patient had effective symptom relief and his quality of life improved in such a way that he now resumed his occupation and could support the family as a normal person.
The focus is to enable the family members to take care
of patient. Apart from this, emotional support through counseling of patients and caregivers, social support by helping them avail social entitlements, vocational rehabilitation, and motivate and create volunteers.
The care and support does not end with the death of the patient but continues as bereavement care till the family can emotionally and socially manage themselves independently.
Home based care helps to provide a peaceful and comfortable death to the patient. If someone gives us a choice between dying in a hospital ICU isolated and connected to all medical instruments and dying peacefully at home in front of loved ones, everyone one of us will chose the latter. This choice is effectively brought out in home based care.
The family centric approach of management can be achieved only by home based care. The family will be well informed, motivated to take care and also prepared to accept the situation on hand. This provides a great relief for the family members who are in the inevitable situation of looking after their near and dear ones who are suffering. The person who is giving the required care will be under severe stress and emotionally confused. The physical and emotional burden of care giver is sometimes unbearable.