Patient Self-determination

Advance Directives

A living will, a durable power of attorney for health care, and other written or oral sources that express a patient’s health care preferences, goals, and values. 


Autonomy (Patient) 

Latin root meaning is ‘self-rule’ or ‘self-law’.  Autonomy is often used interchangeably with self-determination and is associated with emancipated to differentiate a sub-set of minors from the default that parents are minors’ surrogate decision-makers.  To be autonomous is to be sufficiently free to reach one’s own conclusions about what ought to be done.  An autonomous person is sufficiently free from controlling interferences and from limitations (e.g., access to information) to exercise responsible decision-making and to be responsible for outcomes.  Patients with decisional capacity have the right to participate in decisions about the life-sustaining treatments they receive, especially by clearly conveying to the care team their goals of care and their values. They have the right to be informed of their diagnosis and their prognosis, to be involved in their care planning and treatment, and to request or refuse treatment.  They have the right to refuse or to discontinue any treatment even if doing so will cause injury or hasten death.  However, as per CMS Standard 482.13(b)(2), pp. 66-67, “this right must not be construed as a mechanism to demand the provision of treatment or services deemed medically unnecessary or inappropriate”.  They do not have the right to expect/demand any treatment. 


Autonomy (Physician) 

The treating physician is under no ethical or legal obligation to offer, implement, or continue medically inappropriate (i.e., futile or non-beneficial) treatment, including life-sustaining treatments and CPR.  Every intervention is a trial of treatment.  Patients should not be encumbered with treatments that cannot be reasonably expected to achieve meaningful goals of care (such as return to pre-injury/illness status, discharge from the hospital to home, discharge to non-acute care).  Should a patient’s life-sustaining management become futile in this sense, the treating or consulting physician — following a previously established ‘Protocol for Futile (Non-beneficial) Care Determination’ — may enter appropriate orders restricting or withdrawing life-sustaining treatments.  At all times, pain relief and comfort measures should be provided.   


The obligation not to reveal information that another has disclosed.  Confidentiality focuses on who controls access to or disseminates shared information.  Confidentiality is a healthcare professional’s promise not to reveal information from/about a patient without consent.  Ethical challenges occur when there is compelling reason to expect that protecting patient confidentiality will result in harm to or infringements on the rights of other persons. 

Decisional Capacity

A patient’s ability (1) to receive information regarding the risks, benefits, and alternatives of a specific treatment, (2) to understand and process this information, (3) to deliberate, and (4) to make, communicate, and explain choices.  Decisional capacity is determined by a physician, whereas competency is a legal determination rendered by a judge.  An individual’s decisional capacity can fluctuate and can depend on the complexity of the decision being made. 

Emancipated Minor

An individual under the age of eighteen years who is married, who is the parent or guardian of a minor child, or who has been declared emancipated by a court. 


 Informed Consent

Consent has to do with a voluntary act by which one person agrees to allow someone else to do something to/for them.  Consent should be in writing and should include an explanation of the reasons, risks, and benefits for the procedure/s being performed.  When no procedure is performed until the patient (a) has been determined to have the capacity to give or refuse consent; (b) has been informed of the nature of the procedure, risks, alternatives, and the prognosis if the procedure is not done;  and (c) has given  free and willing consent to having the procedure done.  Informed consent allows healthcare professionals to conduct tests, procedures, and/or experimentation on patients with their understanding and agreement. 


Shared Decision-making 

The treating physician makes sure the patient (or surrogate) has the appropriate information and support required to assist in making medically reasonable decisions and recommendations (including but not limited to life-sustaining treatments).  The patient (or surrogate) thoughtfully considers and conveys to the treating physician the goals that are hoped to be achieved from the patient’s medical care.  These goals may need to be periodically re-evaluated as the patient’s medical condition and prognosis change. 



Spirituality has to do with the basis upon which patients’ lives have integrity and balance.  Being religious is a subset of (but not equivalent to) being spiritual.  Patients reveal their spiritual identity when they share their core ideas and life values and when they explain how they sustain these core ideas and values.  Attending to patients’ spiritual well-being has to do with minimizing the spiritual disturbance they are experiencing due to being in a hospital and/or due to injury/illness in order to maximize their ability to make decisions about their care.  It is crucial that patients have (or recover) sufficient balance and focus to communicate well (which requires listening carefully, thinking courageously, and speaking clearly) as they participate in decision-making about their care.  Patients who are spiritually distressed complicate the decision-making process and the management of their care.  They may have lost confidence, motivation, hope.  They may appear despondent or panicky.  They may deny the reality of their situation.  Some spiritually distressed patients are despairing, immobilized, depressed, apathetic, fatalistic.  Their spiritual distress may surpass in urgency their injury or disease.   


Substituted Judgement

A decision based on what a surrogate has reason to think under the present circumstances would have been the patient’s choice, based on knowledge of the patient’s preferences, goals, and values. 


A person with decisional capacity who makes decisions on behalf of a patient who does not have decisional capacity.  If a patient lacks decisional capacity, an appropriate surrogate (usually but not necessarily a close family member) should assist in the decision-making (1) ideally/preferably by representing the patient’s known values and goals or (2) if such are not known, then by promoting the patient’s best interests.