Patient advocacy

Typical advocacy activities are the following: safeguarding patients from errors, incompetence and misconduct; patient rights, matters of privacy, confidentiality or informed consent, patient representation, awareness-building, support and education of patients, survivors and their carers.^[1]


Patient advocates give a voice to patients, survivors and their carers on healthcare-related (public) fora, informing the public, the political and regulatory world, health care providers (hospitals, insurers, pharmaceutical companies etc.), organizations of health care professionals, the educational world, and the medical and pharmaceutical research communities.


Nurses can perform a de facto role of patient advocacy, though this role may be limited due their position in an organization.^[1] Patients can advocate for themselves through self-advocacy and the ability for this self-advocacy can be learnt or improved through training.^[2]

History[edit]

Patient advocacy, as a hospital-based practice, grew out of this patient rights movement: patient advocates (often called patient representatives) were needed to protect and enhance the rights of patients at a time when hospital stays were long and acute conditions—heart disease, stroke and cancer—contributed to the boom in hospital growth. Health care reformers at the time critiqued this growth by quoting Roemer's law: a built hospital bed is a bed likely to be filled.^[3] And more radical health analysts coined the term health empires^[4] to refer to the increasing power of these large teaching institutions that linked hospital care with medical education, putting one in the service of the other, arguably losing the patient-centered focus in the process. It was not surprising, then, that patient advocacy, like patient care, focused on the hospital stay, while health advocacy took a more critical perspective of a health care system in which power was concentrated on the top in large medical teaching centers and a dominance of the medical profession.^[5][6]


Patient advocacy in the United States emerged in the 1950s in the context of cancer research and treatment.^[7] In those early days of cancer treatment, patients and their families raised ethical concerns around the tests, treatment practices, and clinical research being conducted. For instance, they expressed concern to the National Institute of Health (NIH) about the cruelty of the repeated collection of blood samples (for blood marrow examination) and raised questions about whether this was more harmful than beneficial to the patient.^[7] Sidney Farber, a Harvard physician and cancer researcher, coined the term total care, to describe the treatment of children with leukemia.^[8] Under total care, a physician "treated the family as a whole, factoring in its psychosocial and economic needs", rather than focusing purely on physical health concerns.^[8] Previous researchers had dealt with concerns raised by families, because physicians emphasized patient physical health rather than the inclusion of bedside manners with the families. The practice of patient advocacy emerged to support and represent patients in this medico-legal and ethical discussion.


The 1970s were also an important time in the US for patient advocacy as the Patient Rights movement grew. As a major advocacy organization during the time, the National Welfare Rights Organization's (NWRO) materials for a patient's bill of rights influenced many additional organizations and writings, including hospital accreditation standards for the Joint Commission in 1970 and the American Hospital Association's Patient Bill of Rights in 1972.^[9][10] The utilization of advocates by individual patients gained momentum in the early 2000s in the US, and Australia 10 years later, and the profession is now perceived as a mainstream option to optimize outcomes in both hospital- and community-based healthcare.

The American Nurses Association (ANA) includes advocacy in its definition of nursing:


Advocacy in nursing finds its theoretical basis in nursing ethics. For instance, the ANA's Code of Ethics for Nurses includes language relating to patient advocacy:^[21]


Several factors can lead a patient to use nurses for advocacy, including impairments in their ability to express wishes such as die to speech impairments or limited consciousness, lack of independence due to illiteracy, sociocultural weakness, or separation from friends or family caused by hospitalization. Nurses are more able to advocate if they are independent, professionally committed, and have self-confidence as well as having legal and professional knowledge, as well as knowing a patient's wishes. The act of patient advocacy improved nurses' sense of professional well-being and self-concept, job motivation and job satisfaction, and enhances the public image of nurses; however, advocating for a patient could have social and professional consequences.^[1]: 146


Conflict of interests between a nurse's perceived professional responsibilities and their responsibilities to the patient can be a barrier to advocacy.^[22]: 174 Additionally, a nurse is concerned about all of the patients they care for rather any individual patient.^[23]: 190 Gadow and Curtis argue that the role of patient advocacy in nursing is to facilitate a patient's informed consent through decision-making, but in mental health nursing there is a conflict between the patient's right to autonomy and nurses' legal and professional duty to protect the patient and the community from harm, since patients may experience delusions or confusion which affect their decision-making. In such instances, the nurse may engage in persuasion and negotiation in order to prevent the risk that they perceive.^[23]: 192