Teaching palliative care for HIV in Portugal – sharing African and European perspectives

The programme – the Lisbon series on Palliative Care: Inaugural Focus on Non-Cancer Patients, was arranged by Professor Manuel Luís Capelas of the Institute of Health Sciences at the Catholic University of Portugal and Professor José Luís Pereira of the Department of Palliative Care, Bruyère Continuing Care and Department of Medicine at the University of Ottawa.

The programme recognised the development of palliative care beyond cancer care, and my section: Palliative care for HIV traced the development of palliative care in South Africa in response to the AIDS epidemic to the important role it now plays in care, treatment adherence and support for people living with HIV (PLHIV).

AIDS denialism and palliative care 

South African hospices responded to the difficult situation in the country in the 1990’s to develop a strong effort to assist people living with HIV in a time of AIDS denialism.

This denialism tragically delayed access to antiretroviral medication for PLHIV in South Africa, resulting in a high mortality rate from HIV and a huge number of orphaned children.

The principles of palliative care learned through cancer care are applicable to care of people living with HIV.

Peter Selwyn, a world renowned HIV clinician, describes that initially in the early days of the HIV epidemic: “AIDS care was palliative care.”[1]

He notes that the advent of antiretroviral treatment changed the focus of care resulting in “a loss of perspective on chronic disease and the issues relevant to progressive, incurable illness and end of life care.”

Selwyn identifies the importance of including both palliative care and antiretroviral treatment into the comprehensive care of PLHIV.

Research conducted in London by Richard Harding[2] and in Kenya by Vicky Sims [3] identifies the palliative care needs of PLHIV who are also on highly active antiretroviral treatment.

Both at diagnosis when physical symptoms and emotional distress are problematic and in management of HIV as a chronic illness, palliative care needs are significant.

Training on palliative care for HIV 

In the course of the two-day training in palliative care for HIV, key palliative care principles were revisited. Five case studies were developed for the class which was divided into groups each ‘managing’ one of the case studies.

The first case study session focused on communication skills, on breaking bad news and building hope for the people in the cases who were being told their diagnosis of HIV.

In each group one person took the clinicians role and one person the patient role for the exercise. The class then reflected on the feelings experienced by the ‘patient’ and observers in the group and the effect of breaking the news on the ‘clinician’.

The importance of discovering ‘patient’ resources was highlighted and as well as developing an effective care plan that would be the foundation of building hope and a new view of the future for the ‘patient’ and their family.

Palliative care as a compassionate response to suffering 

Palliative care is a compassionate response to suffering. In the context of HIV, palliative care improves treatment adherence to HAART, provides clinical care including the management of opportunistic infections and effective symptom control.

Palliative care practitioners respond to patients’ and families’ needs such as emotional needs, spiritual needs, financial needs, assisting with food security, and identifying and assisting with care for vulnerable children.

The respectful care provided to PLHIV helps to combat stigma and discrimination and enhances the dignity of the person. These interventions improve patient outcomes and quality of life.

When necessary, palliative care practitioners provide end of life care, continuing emotional and spiritual care and focus on patient comfort through symptom management.

Pain management and spiritual care 

The training on palliative care in HIV described these interventions and symptom assessment and management considering the challenges of neuropathic pain in HIV.

The case studies were then developed further with the group describing the problems faced by each ‘patient’ and the individual care plan to address these problems.

The class discussed the role of the clinician in spiritual care using Puchalski’s FICA tool to identify whether the person has a faith of belief, how important is this faith in the context of the illness, is there a faith community to support the person and how do they want the clinician to assist them with regard to spiritual care.

It was agreed that the clinician does not need to share the patient’s faith but can still assist them through acknowledging the importance of spiritual care and referring to an appropriate counsellor.

Stigma towards PLHIV and their clinicians 

A worrying problem facing HIV clinicians in Lisbon is the ongoing stigma both towards PLHIV and also towards infectious diseases specialists working with them.

Stigma has been a persistent problem in HIV care but with improved education and information about the illness and recognition of access to healthcare as a human right and the importance of respect and care for patients, stigma can be addressed effectively.

A useful initiative is that of building compassionate communities that seek to understand each person’s experience (whether patient, family member or clinician) and to tell their stories.

I would like to congratulate Luis & José on the initiative to educate clinicians from different disciplines on provision of palliative care.

This will improve the quality of care provided to people needing palliative care and their families and broaden the knowledge and skills of healthcare professionals across the disciplines.

References