For many, ethics is the stuff of moral philosophy rather than everyday fare. Applied to health, it plays a supporting role in films or television drama when heroic surgeons appeal to ethics in order to resolve dreadful human dilemmas. From time to time, headlines deplore an absence of ethics in the behaviour of practitioners who stand accused of flouting professional guidelines and thus harming patients. Many citizens might shrug and dismiss ethics as a worthy concern for other people in other places. Yet, as Daniel Callahan (2008) observes, we are all ethical beings: …whatever one perceives ethics to be, it is impossible to escape dealing with it. We have to ask how best to direct our personal lives, how best to live with other people, and how best to organize and manage our society (p ix).
In truth, ethics must guide thinking about all aspects of life and well-being. Its recent offspring, bioethics, emerged to help guide decision-making on a range of increasingly complex matters, from genetic screening to end-of-life care, at the heart of life itself. It follows that debates about what policies best promote good health, or the costs and benefits of highly technical medical treatments, or managing fair access to health services, or optimal care at the end of a person’s life are of importance to all, not least to people with disabilities.
Reflecting on the UN Convention on the Rights of People with Disabilities (UN 2007) brings home this truth. Consider the right to health, for example, as people’s health depends in part on the ethical standards applied by those charged with providing health care. The Convention states that States Parties shall:
Require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care; …
(UN 2007, Article 25 d).
Ethics can and should inform everyday decisions in the lives of people with intellectual disabilities. Two examples are making choices about how to manage a home, and whether to take part in a research study. A third area of growing importance relates to the complex health care decisions that older persons will encounter near the end of their lives.
New services such as assistive technology and telecare are exciting innovations, as well as appealing solutions when the demand for formal services outstrips available resources (Perry, Beyer and Holm 2009). While potential benefits of new technologies are apparent, these authors note that ethical issues merit analysis within the framework proposed by Beauchamp and Childress (2001), grounded in four principles: Respect for autonomy, beneficence, non-maleficence (that is, avoiding harm), and justice. For example, before installing a new tracking system to offer greater independence to a young man living in the community with support, there are questions to consider about whether the new system might heighten any stigma for the young man using it, or diminish his chances of social contact with neighbours or carers (Perry, Beyer et al). The prospect of harm does not necessarily mean that a new venture should be rejected, but, rather, that care is taken to hold fast to what is already desirable and satisfying in the person’s life.
Taking part in research
These days, people with intellectual disabilities are more likely to be active participants in shaping and carrying out research about their life experiences and health. The challenge is to balance two important domains: self-determination and the protection of vulnerable participants (NDA 2005). Researchers who aim to build knowledge about the health of people with intellectual disabilities—who typically experience marked disparities in health status and access to health care—must strive to ensure that individuals may exercise their right to take part in research. Informed consent is a core principle that developed after the Second World War in the wake of atrocities carried out with people with disabilities or institutionalised persons in the name of science. Traditionally, gaining informed consent from prospective participants with intellectual disabilities has focused on their perceived deficiencies or vulnerability. But, arguably, competence to give consent might be seen in another, relational way, in the context of the setting where consent is sought, and how that setting might be …. modified to produce a consent process that best reflects and protects the hopes, values, concerns, and welfare of adults with developmental disabilities (Fisher 2003:29).
Recalling that some people with severe intellectual disabilities, notably those living in institutions, are considered vulnerable to exploitation in research, Iacono (2003) reviewed progress in the State of Victoria, Australia in developing research guidelines for informed consent and proxy decision-making procedures. Legislation, government bodies as well as researchers had a role in balancing principles of protection of vulnerable groups with rights to self-determination.
The onus is on researchers to make clear at the outset what, if any, positive outcomes for participants might ensue, and to determine whether benefits outweigh any risk of harm. From the participant’s viewpoint, taking part in research may be its own reward. Regardless of the topic being explored, being a research participant is one way to have a voice and to be treated as a person with autonomy who has a story to tell about an important question. As Griffin and Ballandin (2004) concluded, ethical issues permeate all phases of research, no matter what methods are applied. If that is the case, researchers need not down tools and foreswear all research in case all would.be participants are too vulnerable, but, rather work so as to reach a benign outcome with people who have intellectual disabilities
A good life
People with intellectual disabilities are living longer—many at home, and with older parents or other family caregivers. And as they age, these men and women too will face complex and sensitive issues related to the health and end-of-life of their family members and other loved ones, as well as their own changing health care needs (Botsford and King 2005). For instance, as patterns of morbidity and mortality change, more people with intellectual disabilities may develop cancer or other life.limiting illness. Tuffrey-Wijne, Hogg and Curfs (2007) reviewed papers, book chapters, training and information materials, unpublished materials and policy guidelines around the need of people with intellectual disabilities for palliative care. Case reports were the most prevalent method of exploring pertinent issues such as pain and symptom assessment, ethical issues, service planning and training needs. While there was a steady increase in published materials during the decade surveyed, data around the palliative care needs of people with intellectual disabilities remain scarce.
People may ponder everyday decisions about how they wish to live in private, and choose according to personal preferences. Yet their choices create ripples in the lives of family members and close friends and carers. Worldwide, most people with intellectual disabilities live with their families. Often taken for granted, family caregivers have needs that ought not to be ignored on ethical as well as practical grounds. As Carol Levine argues from a bioethical stance:
… family caregivers’ willingness to help does not remove all responsibility from policymakers, nor from health professionals, community organizations, and society in general. Family caregivers are not resources to be used until exhausted; they are true partners in care. Their mental and physical health and well-being are legitimate causes for concern for bioethicists, public health officials, and medical professionals (2008: 65).
Ethics resonates in the public lives of people with intellectual disabilities as autonomous citizens, neighbours, co-workers, research participants and family members. A challenge for all, especially those leading policy change and providing supports, is to make space and time for thinking through the ethical as well as the personal, logistical or fiscal implications of programme decisions.