care planning is a process aimed at extending the rights of competent
adults to guide their medical care through periods of decisional
incapacity. The process, when accomplished comprehensively, involves
three steps: (1) thinking through one's values and preferences,
(2) talking about one's values and preferences with others, and
(3) documenting them. What follows is a discussion of commonly asked
questions related to the process of advance care planning. (For
related discussion, see also the topic pages on Advance
Directives, DNR Orders and End
of Life Issues.)
How is advance care planning different from advance directives?
Advance care planning is the process. Advance
directives usually are the written documents that provide information
about the patient's wishes and/or her designated spokesperson. Verbal
directives may be ethically valid, but most patients and health
care providers prefer written documentation in the form of official
forms. If official forms are not used, health care providers should
document the result of their advance care planning conversations
in a medical record progress note.
What are the goals and expected outcomes of advance care planning?
The goals of advance care planning are four-fold. In the event of decisional incapacity, they are to:
- maximize the likelihood that medical care serves the patients goals,
- minimize the likelihood of over- or undertreatment,
- reduce the likelihood of conflicts between family members (and close friends) and health care providers, and
- minimize the burden of decision making on family members or close friends.
As a health care provider who engages her patient in advance care planning, you can expect to better understand your patient's views about the goals of medicine, his preferred approach to end of life care, what makes life worth living, as well as his fears about medical interventions and loss of dignity. In addition, you can expect to have a discussion that clarifies misunderstandings. For example, patients often think that cardiopulmonary resuscitation is successful 80% of the time, that mechanical ventilation is a fancy word for nasal prongs, and that coma patients still have the ability to enjoy life.
You can also expect to have better communication with the patient's family members or loved ones because there should be enhanced shared understanding of the patient's values and wishes. Thus, you can expect to have fewer conflicts with family members about the approach to end of life care.
Advance directives will not be the outcome of most advance care planning. At a minimum patients should become familiar with the concept and rationale for advance care planning. Some patients will want to mull things over, others will want to discuss the topic with their close friends or family and health care providers. Fewer will be ready to sign documents and even fewer will be interested in personalizing their advance directives so that they are clear and contain pertinent information with clinical relevance.
Who should I approach for advance care planning?
Unlike health promotional activities that are targeted to select
populations based on cost-effectiveness research, advance directives
and advance care planning have been recommended for everyone. This
is a limitation to the policy as recommended by the Patient Self-Determination
Act of 1991 and the Joint Accreditation of Health Care Organizations,
as it has led to including a standard set of questions at hospital
admission without much information or understanding.
We usually think of doing advance care planning with patients who are at higher risk for decisional incapacity. You should consider having a conversation about this with patients with the following conditions:
- at risk for strokes (e.g., those with hypertension)
- experiencing early dementia
- engaging in risky behavior that is associated with head
trauma and coma (e.g., motorcyclists, riding in cars without seat belts)
- experiencing severe, recurrent psychiatric illnesses
- terminal illness
When and where should I initiate advance care planning?
It is unknown when or where advance care planning should ideally occur. It is generally thought that this should occur initially in the outpatient setting, and then be reviewed upon admission to and discharge from inpatient settings. It is also recommended that whenever there is a significant change in a patient's social or health status, the patient's views about advance care planning should be reviewed.
How can I raise these issues without scaring patients?
You can raise advance care planning as one of many health promotion activities. These discussions are aimed at avoiding harms (over- and undertreatment), and promoting benefits (treatments tailored to the patient's goals). You should reassure the patient that raising this issue does not mean that there is something unspoken to worry about. You also may tell the patient that this topic is difficult for many patients and that you will understand if she does not want to come to any conclusions during this discussion.
Are there some questions that I could use for advance care planning?
When having a discussion about advance care planning, the following questions are recommended:
- Who should speak on your behalf if you become so sick you can't speak for yourself?
- Are there any circumstances that you've heard about through the news or TV where you've said to yourself, "I would never want to live like that?" If so, what are they and why do you feel this way about them?
- Are there any life-sustaining treatments that you would not want to receive under any circumstances? If so, what are they and why do you feel this way about them?
- Some people have more concerns about the way they will die or dying than death itself. Do you have any fears or concerns about this?
- In the event that you are dying, where do you want to receive medical care?
- Should your current preferences be strictly applied to future situations or serve as a general guide to your family (or loved ones)?
How should I advise a patient if she doesn't have anyone to name as a proxy?
You should inform the patient that the best course of action under these circumstances is to write down her wishes and give a copy to her health care providers. She should fill out a legal form, such as a living will, with as much detail as possible, and then include a personalized statement to provide a better understanding of her wishes.
How should I advise a patient if he believes that some family members will disagree with his wishes?
The patient should be informed that the best way to prevent disagreements is to communicate with everyone ahead of time to let them know who has been picked as a spokesperson and what kind of approach to medical care he wants.
As a trainee, should I do advance care planning with my patients?
In the ideal doctor-patient situation the primary care physician should initiate discussion when the patient is not acutely ill. However, this often is not the case and therefore these discussions frequently occur in the hospital setting. Regardless of the setting, good medical practice includes having these discussions. Thus, medical students and residents should engage the patients they are caring for in these discussions. If the patient has been recently diagnosed with a terminal or life changing condition, has severe depression, demonstrates paranoid ideation, or is suicidal, you should ask the responsible attending physician whether this is an appropriate time to raise these issues. Otherwise, you should initiate the discussions and request faculty support (such as role modeling or mentoring) if needed. You should review the framing of the discussion and the patient's views with the attending physician responsible for the patient's overall care.