Managing a patient’s choice to opt out of treatment: three case studies

Elizabeth Foote
HIV Community Specialist Nurse/Team Leader, Royal Liverpool and Broadgreen University Hospital Trust

Ultimately, as healthcare professionals, our aim is to promote a healthy lifestyle, to deliver high-quality care and to enable people to live long and healthy lives. So how do we approach and manage those patients who choose to opt out of treatment and also the consequences of this decision?
The Liverpool Community HIV team have vast experience in the field of HIV. Many HIV specialist nurses originally had a palliative role. Our job was to facilitate a pain free and dignified death. When new anti-retroviral therapy (ART) became available, many patients were being initiated onto difficult and toxic regimens where side effects were severe; however, the desire to live meant that patients put up with this overwhelming distress.
The world of HIV has changed dramatically and HIV is no longer classed as palliative but as a long-term condition (LTC). Although diagnosis can be traumatic and brings with it many emotions, we can now offer people hope. If people are diagnosed early and ART is initiated their prognosis is extremely good and, potentially, they can live as long as someone without HIV. So how do we manage someone who chooses not to take their medication, who chooses to potentially let themselves die?
Witnessing many people die from HIV-related illnesses in the past has been a significant challenge for us as HIV specialist nurses. As a team we have worked as Macmillan nurses and district nurses for years and have looked after palliative patients; those for whom medication was no longer an option; for whom all we could offer was effective symptomatic relief and emotional support as well as to their families. Our aim was to enable our patients to have a dignified and pain free death and to have a patient in front of you who chooses to opt out of ART brings with it ethical and emotional challenges. Read more…