Role of Palliative Medicine Physicians in Management of HIV/AIDS: The way forward

Role of Palliative Medicine Physicians in Management of HIV/AIDS: The way forward

– Dr Bhawesh Pangaria, New Delhi

HIV/AIDS is one of the most devastating pandemics in human history, affecting millions of people around the world and imposing a heavy burden on individuals, families, communities, and countries. The first case of HIV was diagnosed in June 1981 in Los Angeles, USA. In India, the first case was detected in 1986 in Chennai. Since then, as per the HIV Estimation Report 2020, national adult HIV prevalence was estimated to be 0.22% which is on a constant decline from a high of 0.54% in 2000. Currently, India has the third highest burden of HIV in the world with an estimated 23.19lakhs in 2020.

With the coming of new treatments and antiretroviral therapy (ART) drugs, HIV/AIDS has transformed from a rapidly progressing fatal illness affecting young adults to a complex, chronic disease with variable courses affecting the aging population. As life expectancy is increasing, there is a need for comprehensive physical, psychosocial, and spiritual symptom management. This brings the need for the integration of palliative medicine into the care plan for HIV/AIDS.                               

HIV/AIDS comes with a high physical symptom burden. These range from presenting symptoms of disease, side effects from antiretroviral therapy, various pain syndromes in HIV, virological failure associated with antiretroviral therapy, emergence of comorbidities, late presentation of HIV, opportunistic infections, and various AIDS-defining malignancies.

Palliative medicine physicians can help address these symptoms and complications by providing a comprehensive approach that includes symptom management, nutritional support, management of comorbidities, and prevention and treatment of opportunistic infections. Palliative medicine physicians have an enhanced role in situations like AIDS-defining malignancies and conditions.

Patients with HIV/AIDS also have a significant psychosocial and emotional burden. Isolation, rejection, and separation from society are very commonly seen in these patients. There is stigma and discrimination not only from the community but also from family and healthcare workers. This leads to emotional turmoil in the patient with fear, guilt, anxiety, depression, and hopelessness. Palliative Medicine physicians should lend support to the patient and family to overcome such issues. This may need an interdisciplinary team including doctors, social workers, psychotherapists, and counsellors who are trained to provide counselling and address mental health issues.

Palliative care also improves the quality of life of HIV/AIDS patients by enhancing communication and decision-making skills. Patients with HIV/AIDS face stigma from the society which most often prevents them from sharing their problems easily. This leads to difficulty during discussions related to goals of care. Palliative care will help such patients express their preferences and values, regarding treatment plans, goals of care, advanced directives, end-of-life decisions, and bereavement plans. Palliative care services also helps patients with financial aid and legal advice.

Palliative care can empower the patient and healthcare system for better home-based care. Palliative medicine physicians in collaboration with ART centres can effectively provide home-based care and support to families, and social support groups. Home-based care covers physical, emotional, spiritual, and social aspects, including self-care, and care provided by family members, peer counsellors, and outreach workers. This also helps in better management of end-of-life care issues like preparing for death, care and comfort measures during end-of-life care situations.

One of the aspects that is overlooked in the management of HIV/AIDS patients is the caregiver burden. With such stigma and changing family dynamics, caregivers are subjected to physical and emotional stress, the burden of providing care, the risk of getting the infection, and financial support. It can be identified by surfacing emotional symptoms like crying, worry or anxiety, irritability, anger, feeling exhausted, and/or lack of interest in their activities. Palliative medicine physicians can follow many approaches like encouraging the caregiver to take help and talk to friends and relatives, and train family members to provide better physical, psychosocial, and spiritual care to the patient.

We recently treated a 37-year-old unmarried male who was admitted at our hospital with lower respiratory tract infection and complaints of shortness of breath with oxygen requirement. The patient was cachexic with a history of weight loss of >15kgs in the last 3 months. On evaluation, the patient was found to be positive for HIV/AIDS. The patient underwent pretesting and post-testing counselling. The Breaking of bad news was done and the patient then began having existential crises. Repeated counselling sessions with the patient and family members were conducted thereafter. After managing the patient’s lower respiratory tract infection and physical symptoms, he was put on the Antiretroviral therapy. His Goals of care were also discussed and a family support system was established.

People with HIV/AIDS have multiple issues ranging from physical symptoms and syndromes to psychosocial, and spiritual aspects. Patients have to consult different organizations and systems to meet these needs. Many of these issues remain unresolved due to such complex systems. It is therefore the need of the hour to integrate all these activities and resources to ensure the delivery of efficient and coherent services. Palliative Medicine can be that one point of access where patients can get connected health and psychosocial care services rather than having to cross many fragmented bridges to reach services and providers. This integration will not only provide better adherence to antiretroviral therapies and treatment but also lead to an improved quality of life for not just patients but also caregivers and families.