Nursing ethics in the care of people with HIV

Donna Tilley: Community Health, Sydney Local Health District
Elizabeth Crock: Royal District Nursing Service, HIV Program, Melbourne

Introduction and background

Nurses work along the continuum of HIV care, from prevention and testing, engagement in care, sexual and reproductive health, long-term management through to palliative care.  They work in a wide variety of environments and care for people with HIV across the lifespan.  In all settings, ethical issues arise in nursing practice every day, and can often be relatively simple to deal with. In relation to HIV infection, the ethical issues may be extremely complex and difficult to resolve.[1]  It is therefore imperative that nurses ‘have the knowledge, skills, and “right attitude” to be able to respond to the issues in an appropriate, ethically warranted and just manner’.[2]

Ethics is essentially the branch of knowledge that deals with moral principles, or ways of thinking about, understanding and examining ‘how best to live a moral life’.[3] ‘Ethics’ is derived from the Greek ethikos, meaning custom or habit.[4][5] 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.’[6] Despite much progress over the past 35 years, this statement remains true.  HIV as a disease and as a social phenomenon has challenged health professionals to examine their personal and professional ethical values and to uphold the ethical values of their professions in the face of profound stigmatisation of those affected.

Ethical issues such as those relating to privacy and confidentiality, access to new or experimental treatments, and reproductive rights have taken on a heightened emphasis throughout the HIV epidemic, often due to HIV-related stigma.  Moreover, the inextricable link between human rights violations and the spread and impact of HIV on individuals and communities is now well understood.[7]

What is the purpose of nursing ethics?

Ethical frameworks for nursing practice aim to provide guidance on how to identify ethical issues, make ethical decisions and take actions within the context of providing person- and family-centred care, working with communities and colleagues and being accountable for nursing practice.

The Australian Nursing and Midwifery Council’s Code of Ethics for Nurses in Australia identifies ethical standards and values agreed to by the profession, and is a tool for nurses to use to reflect on their own and others’ conduct. The code describes the human rights standards and ethical values nurses are expected to uphold.

Key principles of the Code of Ethics include:

  • recognising the universal human rights of all people
  • safeguarding the dignity and equal worth of everyone
  • valuing and respecting diversity
  • providing quality nursing care for all people
  • facilitating informed decision-making
  • safeguarding cultural safety
  • maintaining confidentiality and privacy.[8]

Ethics is framed by the principles and standards of human rights and ‘the inherent dignity of all members of the human family’, recognised as ‘the foundation of freedom, justice and peace in the world.[9] The Universal Declaration of Human Rights includes civil and political rights, such as the rights to life, liberty, free speech and privacy. It also includes economic, social and cultural rights - the rights to social security, health and education.

Alongside the concept of human rights, nursing ethics appeals to the principles of justice, autonomy, beneficence (doing good) and non-maleficence (avoiding harm) when justifying ethical decision-making.[10]

Stigmatisation and discrimination

The word stigma comes from the Greek word meaning a mark of disgrace or shame.[11] 
Stigmatisation can lead to discrimination resulting in unequal or unjust outcomes.[12]
HIV-related stigma derives from association with the ways transmission occurs, such as sex between men, sharing drug injecting equipment, and sexual transmission per se.[13] [14] HIV-related discrimination has been defined as:

Unfavourable treatment on the basis of known or imputed HIV status; action or inaction that results in people being denied full or partial access to otherwise generally available services or opportunities because of known or imputed HIV status.[15]

Discrimination can be further described as direct and active (intentional and planned) – such as the placing of alerts on an HIV-positive person’s file, or refusing to care for a person with HIV.  Alternatively, discrimination may be indirect and passive – such as the establishment of rules, policies or conditions that in themselves do not appear discriminatory but which result in discrimination against those who are unable to meet the required conditions.[16] For example, generic intake practices where a person is asked their diagnosis over the phone might indirectly discriminate by reducing access for people with HIV who are reluctant to disclose their HIV diagnosis to strangers and who may therefore avoid contacting a service.

Internationally and within Australia, numerous studies have found that people with HIV experience discrimination by nurses in health care, ranging from prejudicial attitudes, lack of eye contact, brusque speech, the use of excessive infection control precautions or inconsistencies around the use of standard precautions, denial of care, modifying care (e.g. not taking blood, not touching patients).[17] Women with HIV who are pregnant or trying to become pregnant have been judged more harshly than others, and have been frequently labelled drug users or sex workers, with assumptions being made about their lives.[18]

The 2013 Australian Futures Survey indicated that 27.6% of respondents had experienced less favourable treatment at a health service as a result of having HIV, the most common forms of discrimination reported being avoidance, confidentiality problems and increased infection control measures.[19] That such concerns are reported currently by people with HIV means that their care and treatment remains an important subject for nursing ethics.

Impact of HIV-related stigma and discrimination

Stigmatisation and discrimination are barriers to people accessing HIV testing and treatment and are associated with poor mental and physical health outcomes.[20] Fear of discrimination due to negative experiences in the past can also inhibit people with HIV from accessing needed services. Often stigma is internalised, which is where a person feels shame about themselves (based on the stigma), expects or fears discrimination to occur, and may avoid services.

Health consequences of HIV-related stigma include increased rates of depression, diminished self-esteem, mental health problems and poor physical health. Ultimately, stigmatisation and discrimination affect people’s access to health care.[21] As such, stigmatisation itself is a breach of ethics: it leads to unjust discrimination in reducing people’s access to services which is a basic human right. 

Strategies for nurses to address discrimination

Quality nursing care aims to provide appropriate non-discriminatory care and seeks to eliminate prejudicial attitudes.  Strategies nurses can use to help change attitudes and promote ethical care of people with HIV include:

  • Role modelling, demonstrating kindness,[22] recognised now as a core value in the Australian Code of Ethics for nurses.[23]
  • Educating other health-care workers and the general community about HIV
  • Providing education about the appropriate use of standard precautions; educational interventions around HIV-related fear and myths and misunderstandings about transmission risks
  • Leading discussions about ethical issues and providing an open forum for questions and clarification of concerns
  • Moral consciousness-raising among colleagues about the effects of stigma and discrimination[24]
  • Using HIV-positive speakers in health-care worker education,[25] [26] identified as one of the most successful ways of changing attitudes.

Disclosure of HIV status within health care and the ‘right to know’

It is well established that there is no legal right for a health professional to know a person’s medical diagnosis, and that the best way to protect staff in health-care settings is through the application of Standard Precautions.[27]  People with HIV are not obliged to disclose their HIV status to health professionals.[28] On the other hand, it is beneficial for treating professionals to have the full clinical picture in order to provide optimal treatment and avoid, for example, drug interactions or missed diagnoses of HIV-related conditions.[29] [30]

Disclosure without consent can only be justified ethically and legally in certain circumstances: if there is an imminent risk to another person’s health or safety or if it is directly needed for the treatment or care of that person, in accordance with local laws.[31]

Best practice involves creating a supportive environment in health services, where people can feel safe and confident in disclosing their HIV status.   For further information on this topic including clarification of legal aspects in the Australian setting on a state-by-state basis, see Cameron,[32] and Knack.[33]

Confidentiality

The principle of confidentiality is closely related to the concept of privacy and is both a legal and an ethical requirement.[34] While laws about confidentiality and ethical obligations apply to people with all health conditions, HIV confidentiality has acquired a greater significance, highlighting pre-existing deficiencies within the health-care system. 

Ethical management of information involves respecting privacy and confidentiality without compromising health or safety. Considerations for nursing practice include implementing strategies to avoid inadvertent breaches of confidentiality – such as:

  • systematic procedures requiring staff check who is present with the patient when discussing discharge medications to ensure HIV status is not accidentally disclosed
  • ascertaining to whom the patient has or has not disclosed his or her HIV status and documenting this information
  • using numbers instead of names in waiting rooms
  • informing patients about the limitations to confidentiality, such as by advising them of the legally mandated requirement for the nurse to inform child protection authorities where sexual contact with a minor is disclosed.[35]

Informed consent

Informed consent is a central ethical and legal principle in the provision of health care, including nursing care; it is applicable to all health interventions with certain well-defined exceptions (such as life-threatening situations).[36] The requirement for consent to be informed is justified on the ethical grounds of avoiding harm, unfairness and exploitation, as well as of protecting a person’s autonomy or self-determination.[37] 

The requirements of informed consent include: disclosure (of all the relevant information), comprehension (the person must understand the information being given and the implications of consent), competence (the person must be capable of making the decision), and consent must be freely given (voluntary).[38]  Informed refusal can also be the outcome of the process.
For example, it is a legal requirement before undertaking HIV testing that a person has provided informed consent (with rare exceptions such as where a legal order is made for compulsory testing or in emergency situations).[39] This means that the person agrees to testing on the basis of understanding the procedure, the reasons for testing and is capable of evaluating the personal implications of testing.[40]  In cases where routine HIV testing is recommended (such as in pregnant women), informed consent should still be obtained. Breaches of the requirement to obtain informed consent can have serious consequences, including harm to patients and legal repercussions for the health worker.[41]

Ethical nursing care ensures each person is responded to as a unique individual and assisted to participate in informed decisions about his or her care (including refusing treatment or care) without being disadvantaged due to appearance, language, culture, religion, age, sexuality, economic status, disability or health status.  This approach ensures respect for the client’s autonomy and upholds his or her right to informed consent.

Quality of life, advance care planning and end-of-life decision-making

The meaning of ‘quality of life’ is personal and unique to each individual. HIV-related stigma and discrimination has been shown in international studies to affect quality of life negatively.[42] [43]  These findings highlight the critical importance of addressing stigma within health-care settings, where people have the right to feel and to be safe.

Nurses can be instrumental in promoting the rights of clients by encouraging and supporting them to plan in advance for their future care needs and treatment wishes, especially around end-of-life care and quality of life.  An advance care plan can be made to prepare and record clients’ decisions about health care that they may want if they are no longer able to communicate their wishes; it is a clear statement that can guide health professionals.[44] Documents required can include an Advance Care Directive and Statement of Choices, and an enduring power of attorney (medical treatment) if the person wishes to appoint a substitute decision-maker, and a Refusal of Treatment Certificate (if there are specific treatments or care that a person wishes not to have).

While the lifespan of people with HIV now approaches that of people who are HIV negative, challenging end-of-life issues still arise that require careful ethical deliberation and professional judgment by nurses in the course of their work. Nurses may be caring for patients who are questioning whether and when to stop antiretroviral therapy, who are facing ‘not for resuscitation’ decisions, or who may request assisted suicide.  Some of these issues have both legal and ethical ramifications, for example, assisted suicide is illegal in Australia.  A strong grounding in ethics and ethical decision-making can assist nurses to navigate such issues with clients.

Emerging issues and their ethical implications - Pre Exposure Prophylaxis

In coming years, nurses will become increasingly involved in biomedical HIV prevention including the provision of pre-exposure prophylaxis (PrEP).  PrEP is the use of antiretroviral drugs taken by HIV-negative people to prevent HIV infection (http://endinghiv.org.au/nsw/stay-safe/prep/ see Section Biomedical HIV Prevention  for more details).  PrEP is highly effective; however, as with any clinical innovation its ethical implications need to be considered.

PrEP has provoked considerable controversy among bioethicists globally. Ethical debates around PrEP may concern justice – for example, Jay and Gostin (2012) argue that PrEP is very costly compared with alternatives, so questions of distributive justice are raised.[45] The high cost and regular monitoring required could exclude people on low incomes, unstable housing, drug dependence or mental health problems, exacerbating health inequalities[46] unless PrEP is properly subsidised to ensure equity of access.  There is widespread agreement among bioethicists that, in allocation of resources, any allocation scheme should be equitable[47] and yet, as Macklin points out, less than half of people with HIV in developing countries are receiving antiretroviral agents[48][49] let alone PrEP for those without HIV infection. Verguet at al. assert that PrEP is a high-cost intervention which will have maximum effect only in high-prevalence countries.[50]

A second ethical principle of relevance to PrEP is beneficence – there is a need to balance benefits and harms.  There is a strong ethical claim supporting the use of PrEP to prevent HIV infection.  However, this must be balanced with potential threats or harms.  In the case of PrEP, ethical questions may be raised about the appropriateness of prescribing antiretroviral medication to healthy people. There may be concerns about long-term safety, side-effects and the development of resistance.[51]

While not exhaustive, this discussion serves to emphasise the importance for nurses of exploring the ethical implications of new technologies, and participating in ethical inquiry and debate in an informed way, as nurses worldwide are instrumental in the rolling out of treatments such as PrEP, in policy development around access, and in PrEP research. PrEP programs will only be optimally designed, implemented and evaluated with the inclusion of nurses’ informed ethical perspectives, alongside those of other health professionals, people with HIV themselves and those most at risk.

Conclusion

Ethics has always been a core component of HIV nursing and it can be argued that nurses working in HIV have been at the forefront of ethical practice since the start of the epidemic.[52] [53]Nurses must be educationally prepared and capable of contributing to and making sound moral decisions based on evidence and careful ethical thinking and there is a continuing need for strong advocacy and ethical leadership in the field of HIV nursing.  Several key ethical issues in HIV nursing have been discussed here, including stigma and discrimination, HIV disclosure, informed consent, confidentiality and quality of life.  The concepts raised are applicable to all ethical issues encountered within this challenging nursing specialty.

Within the collaborative, client-centred framework of the HIV health-care sector, the nursing profession can contribute to the best possible outcomes for people with HIV, through protecting and promoting their human rights, through individual and collective advocacy, and through adhering to its firm foundation in professional nursing ethics.

HIV and ethics - Case example

A 32-year-old man was diagnosed with HIV infection 3 months ago, after presenting to a sexual health clinic for a routine screen. He attends the nursing clinic for HIV monitoring. You update his heath history and note he is taking antiretroviral medication. You also take a sexual health history to determine if you need to offer a sexual health screen at the current visit. In the sexual history he tells you he has one regular female partner and also casual male partners. When you ask about whether he has disclosed his HIV status to his partners, he informs you he does disclose his status to all partners and that he is using condoms with all partners. His female partner is HIV negative; however, she is not aware he is having sexual contact with men. He wants to disclose his sexuality to his female partner but is concerned about the effect it will have on his life and future.

  • What effect would an HIV disclosure without consent have on the client’s social supports?
  • How will you maintain confidentiality about the client’s sexual history if he and his partner are both attending the clinic at the same time?
  • How might your moral beliefs influence the care you provide?
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