Elizabeth Crock: Bolton Clarke HIV Program, Melbourne  

Acknowledgements: 

Donna Tilley: Western Sydney Local Health District, Sydney (first edition) 

This chapter introduces ethical principles and decision-making in practice and highlights key ethical issues that can arise in the care of people living with HIV.  

• Introduction and background 
  • What is the purpose of nursing and midwifery ethics? 
• Stigmatisation and discrimination in healthcare 
  • Impact of HIV-related stigma and discrimination 
  • Strategies for nurses to address discrimination. 
• Disclosure of HIV status in health care and the perceived ‘right to know’. 
• Confidentiality 
• Informed consent 
• Quality of life, advance care planning and end-of-life decision-making  
• Emerging issues and their ethical implications – Pre-exposure prophylaxis  
• HIV and ethics – case example 

Introduction and background  

Nurses and midwives work along the continuum of HIV care, from prevention and testing, engagement in care, sexual and reproductive health, and long-term management to palliative care.  They work in a wide range of environments, caring for people with HIV across the lifespan.  Regardless of the setting, ethical issues arise in clinical practice every day, and can often be relatively simple to deal with (1).  In HIV nursing and midwifery practice, ethical issues may be extremely complex and difficult to resolve (1).  It is therefore imperative that both professions ‘have the knowledge, skills, and ‘right attitude’ to be able to respond to the issues in an appropriate, ethically warranted and just manner’ (1, p. 147).  

Ethics is the branch of knowledge that deals with moral principles, or ways of thinking about, understanding, and examining ‘how best to live a moral life’ (1). The word ‘ethics’ is derived from the Greek ethikos, meaning custom or habit (2, 3). The equivalent Latin term is ‘mores’ (custom or habit) from which the term ‘moral’ derives, despite popular usage being somewhat confusing; that is, some people interpret the word ‘morality’ as relating to personal or private values (3). In this section, the terms ‘ethics and ‘morality’ are used interchangeably, there being no philosophically significant difference between the two (3). 

In 1991, ethicist Fredrick Reamer observed that the HIV epidemic has tested ‘the moral mettle of [health] professionals in a way perhaps that no prior public health crisis has’ (4). Despite much progress since then, this statement remains true.  HIV as a disease and as a social phenomenon has challenged health professionals to examine their ethical/moral values and to uphold those of their professions in the face of profound stigmatisation of those affected (4).  

Ethical issues such as those relating to privacy and confidentiality, access to new or experimental treatments, reproductive rights, and the rights of Lesbian Gay Bisexual Transgender Intersex and Queer (LGBTIQ) people have taken on a heightened emphasis throughout the HIV epidemic.  Moreover, the inextricable link between human rights violations and the spread and impact of HIV on individuals and communities is now well understood (5).