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Back to Module 7: Goals of Care Goals of Care

7-Step Protocol to Negotiate Goals of Care
Identifying Goals to Hope For
Cultural Considerations
Communicating Prognosis
Use of Language
Setting Goals and Priorities for Treatment and Care
Decision-Making Capacity

• Decision-Making Capacity Defined
• When a Patient Lacks Decision-Making Capacity

Decision-Making Capacity

Decision-Making Capacity Defined

• Decision-making capacity implies the ability to understand and make medical decisions for oneself

• Occasionally, patient choices that are unsupportable suggest that he or she is losing decision-making capacity

• Reassess your patient if this seems possible
• Any physician can determine, does not require a psychiatrist or a court ruling

• Patient with decision-making capacity must:

• understand information
• use the information rationally
• appreciate the consequences
• come to a reasonable decision for him/her

• Capacity varies by decision
• Other cognitive abilities do not need to be intact

For more information see Module 3: Whole Patient Assessment and Module 15: Legal Issues

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When a Patient Lacks Decision-Making Capacity

• When patients lack the capacity to express their own values and preferences for medical care, goals must be determined by others

• Proxy decision-maker should be sought to help clarify the patient’s goals and consent to specific care plans

• Appropriate proxy is a person selected in advance for this role by the patient (see Module 1: Advance Care Planning), or a person who has knowledge of the patient’s values and preferences and is willing and able to serve in this capacity

• When the patient has not preselected a proxy decision-maker, this usually falls to the next-of-kin. Legal criteria for proxy selection vary from state to state (see Module 15: Legal Issues)

• Sources of information: taken together this information will allow an assessment of what the patient would have judged (i.e., a substituted judgment)

• written advance directives
• patient’s verbal statements
• patient’s general values and beliefs
• how patient lived his/her life
• best interest determinations

• The physician should guide the proxy/surrogate in understanding his or her role in determining what the patient would have wanted based on available information

• Where information is lacking, it becomes necessary to try to determine what would be in the best interest of the patient

• This is often, but not always, the same conclusion and often errs more toward life prolongation

• Why is this process helpful:

• respects patient
• builds trust that the health care team is acting in the best interest of the patient
• reduces guilt and decision regret

• Practical ways to elicit patient values and preferences in discussions with proxy decision-makers:

• Help me to understand what your husband was like before he got sick. What was most important to him?


• Has he ever said anything about how he would want to be treated if he could no longer make decisions for himself?


• What would he say in this situation?


• Do you have any other family members or friends who have experienced serious illness? Did he or she express how he or she would want to be treated in that situation?


• Based on everything you know about him, what do you think he would have wanted in this situation?

• Many of the approaches that work for an advance care planning discussion also work for establishing immediate goals of care, whether working with the patient or a proxy

• In particular, it can help to go through a worksheet again, using predrafted scenarios, goals, and treatment options, prior to returning to the situation at hand


• Often clarity and perspective return with this exercise for getting a broad perspective and allow a comfortable settling into current goals

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