Respecting patient autonomy does not mean that health professionals only respect the choices of persons who are deemed autonomous. It requires that they respect whatever level of autonomy the person is capable of. Where the dying person is incompetent or impaired or suffers from some psychological, emotional, physiological or social disability, the principle of autonomy obliges health professionals and organizations to create the conditions that foster capacity. They do this through, for example, the early provision of treatment or care plans and ensuring that available options are meaningful to the patients involved and consulting with family members and friends about what the person would have wished in the circumstances.
Autonomy can be expressed in terms of rights e.g. to information, explanation and privacy and to choose or refuse burdensome or life-prolonging treatments. Such rights assure patients that they will not be forced to adopt values that are not their own; that they, not health professionals, are given the final say in determining their own best interests. However, autonomy is not an absolute right: the right to autonomy is limited by the legitimate autonomy and welfare claims of others. Health professionals may constrain autonomous choices by deciding to limit treatment options where they might pose a harm or disadvantage to others or where a patient is insisting on a treatment which is deemed futile.
Means for facilitating autonomy include providing appropriate information and explanation in ways that are meaningful to patients. While health professionals may recommend one treatment or plan of care over another; the idea is that patients are able to understand what these recommendations mean and so, can assent to or dissent from them: their decisions are not made out of obedience or acquiescence to doctors’ or nurses’ orders or requests. This also requires proactively attempting to understand the patient’s informational needs and anticipating obstacles (linguistic, cultural, social etc.) which may thwart the patient’s understanding or ability to communicate. Respect for autonomy also involves having honest conversations that address unrealistic expectations which patients and (where appropriate) families may have about medical treatment and care, as well as respectful discussions about both medical and non-medical questions and worries. The dialogue between patients and professionals and between members of healthcare teams requires collaborative effort where questions are encouraged and all members of the team genuinely desire and welcome patient participation in decision-making.
Barriers to patient autonomy include discomfort around, and unwillingness to discuss, end-of-life issues; lack of privacy and breaches of patient confidentiality; lack of documented treatment or care plans; imbalances of power between patients, health professionals and families; ageism (ignoring older or younger patients’ autonomy); lack of appropriate emotional, psychological and spiritual support; pressure on staff time and shortage of beds; and reluctance on the part of doctors or patients’ families to refer patients for palliative care.
The needs and wishes of the dying person and not just their family must be taken into account. The patient’s right to choose is becoming more of an issue as people are becoming more informed and assertive and also as end-of-life care is being addressed by legislative frameworks.
For more information about Patient Autonomy, please contact Hospice Friendly Hospitals on +353 1 673 0068.