Palliative Care- A Constant Support System

Palliative Care- A Constant Support System

Patient: Sameer

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India and much of the world is under lockdown at the moment. Today is 20th April, 2020 and since 25th March,2020, businesses, except essential services, have been shut, so too schools and universities. The only citizens up and about, fighting the corona virus and making sure that the lockdown is regulated, and not violated, are the health and sanitation workers and the police. Hospitals are in a flux, doctors and nurses are working overtime to fight this pandemic.

Palliative care is the third arm of medicine, and just as the hospitals and health workers are primarily functioning to fight the corona virus, palliative care for non-Corona patients, must function too. Patients under palliative treatment need regular care, making sure that they are living a symptom-free life; and this is more vital now, because people with pre-existing conditions and low immunity, are more vulnerable to the virus.

PALCARE is a home-based palliative care service. While PALCARE has discontinued home visits due to the lockdown, until further notice by the government, PALCARE’s services continue unabated, everyday. BUT now the visits are through phone calls, texts and video calls. New patients need to be enrolled and provided immediate care. Normally, when a new patient is enrolled a comprehensive first visit is conducted by the team of doctors, nurses and the counsellors. However, given the current circumstances, PALCARE is enrolling a few patients over the phone.

One such new patient enrolled over the phone was Sameer (name changed to maintain anonymity). On the 7th of April 2020, a social worker from Hinduja hospital referred Sameer to PALCARE. Sameer was a 13-year-old boy with Non-Hodgkin’s Lymphoma living with his family in Ulhasnagar, Mumbai, comprising his father, mother, and two elder brothers. The hospital made it clear to the family that there are no curative treatments for Sameer, and that palliative care is the only option at this stage. Upon enrolment, Sameer showed symptoms such as fever, swelling on the neck, vomiting and extreme weight loss due to very less intake of food, he weighed only 28 kilos. The PALCARE doctor studied Sameer’s symptoms through video calls and prescribed medicines which brought down his fever and the swelling within a few days. His vomiting was also brought under control.

Family As is to be expected in situations such as this, Sameer’s family was under a lot of distress. The eldest brother, Sandeep, 22 years old, was the primary decision maker in the family, and also the one who was in contact with the PALCARE team. His father, a heart patient himself, for all fair reasons had been kept away from the prognosis.

On a telephonic session with the PALCARE psychologist, the brother expressed shock at receiving information how advanced Sameer’s condition was and that he did not have much time left. He was incoherent in his speech and was trying to come to terms with the harsh reality of his brother’s situation. He spoke between long gaps of silence and expressed that in his heart he had known his younger brother would not survive, and requested PALCARE not to break the bad news to his parents as yet. PALCARE’s psychologist painstakingly waited through the silences and made sure to take the conversation at a pace the brother was comfortable with.

Palliative care takes a holistic view of the patient’s treatment. It believes that there are several factors that needs to be considered, beyond physiological factors, to make the patient pain free and comfortable and bring peace, not only to the patient alone, but to the entire family around the patient. Cultural differences, belief systems, religious and spiritual inclinations, privacy, emotions of the family, all these factors have to be taken into consideration. Moreover, to get through to the family to do the right thing, bearing all these factors in mind, and to not break the sanctity of these structures, is what palliative care also seeks to achieve.

PALCARE PsychologistAs Sameer’s symptoms were brought under control, and as he got back on a regular liquid diet, a noticeable change was observed in the atmosphere and the mood of the family. While talking again with the brother, the PALCARE psychologist noticed he was happier, there was joy in his voice. He mentioned that his brother was eating again, and was communicating a bit with the family. Sandeep understood his brother’s prognosis, and was slowly coming to terms with it. At that point, the PALCARE psychologist asked if she could speak to the mother, who hesitantly came on the phone. When asked what she understood about her son’s condition, she said that it was a consequence of some kind of black magic or voodoo that someone had performed on Sameer. The psychologist was sensitive to not negate this belief outright, so that she could continue to build rapport with the mother, so essential in delivering productive and quality palliative care.

Taking every member of the family into confidence to achieve the goal of palliative care which is total pain management – including spiritual, psychological, social, emotional pain – is of utmost importance. The family needed constant support; and the PALCARE team never fell short of meeting the challenge of conducting sessions over the phone. Over a few more telephonic conversations, held at rapid intervals, the PALCARE doctor, psychologist and nurse built a bond of trust with the family and were slowly able to break bad news to all members of the family.

Sameer passed away peacefully in the early hours of this morning. His parents and siblings, having come to terms with the terminality of his condition, were able to spend quality time with him in the last 10-12 days of his life and that was the best farewell they could give their beloved Sameer.

*Patients’ names, on this and following pages, have been changed to protect their identity.