The AARC Statement of Ethics and Professional Conduct states, “Respiratory therapists must respect and protect the legal and personal rights of patients they treat, including the right to informed consent and refusal of treatment.1” They must provide the patient (or family) with a clear understanding of treatment options and possible outcomes. They also have an obligation to inform the attending physician if there is any doubt that the patient does not fully understand and has not fully consented to the proposed treatment or diagnostic procedure.
Many of you no doubt have been involved in situations where the “plug is pulled”—always a hard decision that is made more difficult when the patient has left no specific instructions on what to do when treatment is futile.2 This leaves spouses, adult children, and siblings in the situation of having to make the decision, sometimes without really knowing what the dying person would want.
An advance directive sets forth the patient’s wishes and guides the family and physicians into making the right decisions. The advance directive comprises two documents: a living will that describes the kind of life-sustaining and other treatment patients want if they are unable to communicate; and a health care power of attorney, which designates someone to make medical decisions in such cases. Without an advance directive or surrogate decision maker, hospital staff and clinicians may make the decisions without taking into account what family members might think are the patient’s wishes.
It sounds as if advance directives are good for everyone. Unfortunately, even with advance directives, some people are not well served. Advance directives have many legal requirements and can have unintended consequences that might prevent patients from making or communicating their end-of-life care preferences.3 Among them:
- Most advance directives are written above a 12th-grade level and are not available in many patients’ native languages. About 40% of the US population reads at or below an 8th-grade level, and may not understand the advance directive.
- Many states do not allow primary physicians, caseworkers, and people working for the patient’s clinician or long-term care facility to serve as health care agents. Homeless, institutionalized, socially isolated, disabled, or migratory patients may have no one else to turn to.
- Execution requirements, such as notarized signatures and witnesses, affect patients from culturally and socially diverse backgrounds or those with limited literacy.
- Not all states recognize an advance directive executed in another state. This could be a serious problem for migrant and transient homeless patients and people who have the means to travel.
- Standardized advance directives do not take into account religious, cultural, or social preferences.
So, although advance directives are powerful tools, legal restrictions may have made them less useful in some cases. Simple improvements can be made to ensure that all patients are equally served. A good place to start, according to Castillo et al,3 would be to improve the readability of advance directives, eliminate surrogate restrictions, accept oral and out-of-state directives, and include documentation of religious, cultural, and social beliefs. Changes such as these can give RTs the confidence that their patients understand their rights and make the best choices for end-of-life care.
- The AARC Statement of Ethics and Professional Conduct. Available at: www.aarc.org/resources/position_statements/ethics_detailed.html. Accessed January 20, 2011.
- Salmasey DP, Snyder L. Substituted interests and best judgements [extract]. Available at: jama-ama-assn.org/content/304/17/1945. Acccessed January 20, 2011.
- Castillo LS, William BA, Hooper SM, et al. Lost in translation: the unintended consequences of advance directive law on clinical care. Ann Intern Med. 2011;154:121-128.