1st Decembers is commemorated globally as ‘World Aids Day’. Dr Rajni Herman, a palliative care physician and Project Director of Shalom, Delhi (an organization providing holistic care for patients with HIV, Cancer and Non-Communicable Diseases ), writes about the role of Palliative Care in assisting people who are living with and affected by HIV
Neeta (name changed) and her husband are HIV positive patients.
It was during the World Aids Day commemoration event on 1st December, 2021, at Shalom, that Neeta shared her life journey.
Neeta’s and her husband’s world fell apart in 2010, when they were diagnosed to be HIV positive. They were soon started on antiretrovirals from the nearby Government Hospital. Over time, the news about their HIV status percolated within their social community resulting in them having to face immense social stigma. Neeta shared that the discrimination that followed this had made life unbearable for both her husband and her. She perceived life as hopeless and not worth living, and therefore attempted suicide, as a measure to end it all once in for all.
It was at this stage, that an NGO, fortunately, referred Neeta and her husband to Shalom – an HIV/AIDS project located in New Delhi.
The home care team at Shalom began working with the couple instantly. Our social workers from the home-based care team offered Neeta and her husband an open and a non-judgmental ear. This was what the couple desperately needed! The couple was then offered periodic counseling, medical treatment, intermittent home visits by the ‘home care team’, inclusion to a support group, and support in the form of monthly food rations. The synergistic effect of Shalom’s involvement resulted in small yet powerful changes in her life which helped the couple to eventually turnaround their lives. Neeta concluded her sharing by saying “I have hope now and I now know that I CAN LIVE with this illness”.
From a woman who had lost self-confidence, self-worth and confidence in herself and life, we saw Neeta rising from hopelessness to renewed hope. Witnessing this transformative journey in Neeta’s life encouraged us to continue our mission. Today, an empowered Neeta works as a seamstress and supports her husband and her extended family. She even encourages other women during the support group meetings by sharing her journey of living with HIV.
In Neeta’s case, her suffering was multifaceted and conceptualized as ‘total pain’ which includes suffering that is not only physical but also psychological, social, emotional, and spiritual. For several of our patients like Neeta, there exists a high degree of emotional and existential suffering. The grief that descends upon them when learning about the diagnosis is compounded by the extent to how much their lives changes post a diagnosis of HIV/AIDS. The stigma and discrimination are additional burdens they are forced to bear on a daily basis. Offering palliative care helps improve the quality of life of HIV positive patients like Neeta and her husband.
At Shalom, we regularly integrate the principles of Palliative Care into the delivery of care and services throughout their illness trajectories. Our trained multi-disciplinary team helps implement this care effectively at our hospital, in our patients’ homes, and in the community settings. This team is driven towards delivering care that is not limited to only the patient but to the patient’s entire family as well, by developing an ecosystem of support for the patient to live in.
- Palliative Care improves the quality of life for adults, transgenders, elderly, and children, who are living with and affected by HIV by addressing their physical, psychological, social, and spiritual issues
- It supports and improves their ART adherence through identification and treatment of symptoms and by addressing the barriers that prevent adherence
- It manages physical symptoms i.e., pain, and other opportunistic infections
- It provides end of life care and bereavement support
- It offers psychological care, including emotional support for the patient and their care givers
- It helps provide social support which includes identification of financial needs, poverty alleviation, food security, coping with stigma and discrimination and identification and planning for orphans and HIV positive children
- Offers Spiritual support including spiritual assessment and appropriate spiritual care
- Addresses and provides care for emotional and social suffering including depression and anxiety
In our work with HIV infected and affected individuals, children, families and transgenders, we have learnt that Home Based Care is one of the most effective methods of providing palliative care. Home Based Care is an essential comprehensive care that is provided to people living with HIV/AIDS (PLWHA). Through home based care, the health care providers and the trained home based caregivers are able to offer adherence support to PLWHA who are on ART. Addressing various symptoms, managing their pain, offering basic nursing care, providing psychological support by listening to the patient and responding to their fears and anxiety, providing social support, nutritional support, and offering bereavement support for the patient’s loved ones are various mechanisms by which we offer support in our home based care services. These components in totality are essential in supporting people living with HIV and AIDS, and by integrating all these components we strive to instill hope in their lives that “Yes, YOU CAN live with this illness”.
About the Author: Dr. Rajni Herman is a palliative care physician, working as the Project Director of Shalom, Delhi, a Palliative Care Unit of Emmanuel Hospital Association.
Shalom provides holistic care for patients with HIV, terminal cancer and Non-Communicable Diseases. It’s various components include a hospital clinic with inpatient and outpatient facility, home care programs for patients with HIV, Cancer and NCD, an adolescent program, palliative care work among transgenders, support groups and a livelihood program.
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