Advance Care Planning
Robert A. Pealrman, MD, MPH (2013) with Mark Tonelli, MD, MD, Clarence Braddock III, MD, MH, and Kelley Edwards, PhD (1998)
Advance care planning is a process to help patients with decision-making capacity guide future health care decisions in the event that they become unable to participate directly in their care. The process, when accomplished comprehensively, involves four steps: (1) thinking through one's relevant values and preferences, (2) talking about one's values and preferences with one’s spokesperson, close family members and health care providers, (3) documenting them with an advance directive, and (4) reviewing them periodically and updating them as needed. 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 DNAR Orders and End-of-Life Issues, Surrogate Decision-Making.)
How is advance care planning different from advance directives?
Advance care planning is the process as outlined above. Advance directives usually are the written documents designed to allow competent patients the opportunity to guide future health care decisions in the event that they are unable to participate directly in medical decision making. (See discussion below of Advance Directives. For related discussion, see Termination of Life-Sustaining Treatment.)
Verbal directives may be ethically valid, but most patients and health care providers prefer written, official documentation. 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. These goals reflect respect for the principles of patient autonomy (right to self-determination in light of personal interests including goals, preferences, and concerns for one’s family), beneficence (promoting good) and non-maleficence (avoiding harm). In the event of decisional incapacity, they are to:
- Minimize the burden of decision making on the spokesperson and/or family members.
- Reduce the likelihood of conflicts between a patient’s spokesperson, family members and health care providers, and
- Minimize the likelihood of over- or under-treatment,
- Maximize the likelihood that medical care serves the patient’s goals,
As a health care provider who engages her patients in advance care planning, you can expect to better understand your patient’s views about who they want you to communicate with when health care decisions are required and they can no longer participate in decisions, their goals for medical treatment and care under situations in which they cannot participate in decisions, their preferred approach to end-of-life care, and their hopes (e.g., to live longer, to have quality relationships with loved ones), as well as their fears about medical interventions (e.g., permanent loss of cognitive functioning, loss of dignity). During the advance care planning process the provider may want to discuss patient preferences for treatment and care if a patient has an illness with known possible sequelae. For example, someone with mild dementia may be able to state if she would want to receive antibiotics and be hospitalized if she developed pneumonia at a time when she could no longer provide self-care or recognize family members. 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. These discussions also may reveal patients’ treatment preferences that fall outside standard practices in medicine (e.g., herbal remedies, medically futile treatments). When these occur, they provide opportunities to negotiate about culturally sensitive approaches to health care and establish limits to patient autonomy based on professional standards.
You can also expect to have better communication with patient’s family members or loved ones because there should be enhanced shared understanding of patient 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. However, advance care planning may lead to completion of a Physician Order for Life Sustaining Treatment (POLST) form, an order that reflects the patient’s goals and wishes for inpatient and outpatient medical care. (See Advance Directives and Additional Readings below.) At a minimum, patients should become familiar with the concept and rationale for advance care planning. Some patients will want to mull things over, whereas 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 (e.g., attaching additional information, such as worksheets that characterize values and preferences) 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, asking about interest in advance directives and advance care planning has been recommended for newly admitted patients to health care organizations. This is recommended by the Patient Self-Determination Act of 1991 and The Joint Commission, and it has led to including a standard set of questions at hospital admission.
When not systematically incorporated into a routine we often think of initiating advance care planning with patients who are at higher risk for decisional incapacity. If you practice in a setting that does not require routine advance care planning discussions with patients (e.g., on hospital admission, biyearly), you should consider having a conversation about this with patients with the following conditions:
- Chronic progressive and terminal illness
- Severe, recurrent psychiatric illnesses
- Debility/frailty (e.g., those at risk for delirium associated with an acute illness)
- Engaging in risky behavior that is associated with head trauma and coma (e.g., riding a motorcycle without a helmet, riding in cars without seat belts)
- Early dementia
- At risk for strokes (e.g., those with hypertension)
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 under-treatment), 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. You may want to refer the patient to one of several reputable internet based advance care planning sites to stimulate further thought and preliminary steps in advance care planning (see Additional Readings)
Are there some questions or aids that I could use for advance care planning?
When having a discussion about advance care planning, the following questions are recommended:
- Should your current preferences be strictly applied to future situations or serve as a general guide to your spokesperson or family member(s)?
- In the event that you are dying, where do you want to receive your health care?
- 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?
- Are there any life-sustaining treatments that you know you would want to receive regardless of the circumstances, or would not want to receive under any circumstances? If so, what are they and why do you feel this way about them?
- For other situations in which you would not be able to communicate your preferences, such as [to be provided by the clinician], what do you think should be the goals for your care? For example, should the goal of care be to prolong your life, improve or maintain your function and/or quality of life, provide comfort care, or something else?
- For each of the circumstances that you just identified, what do you think should be the goals for your care?Â For example, should the goal of care be to prolong your life, improve or maintain your function and/or quality of life, provide comfort care, or something else?
- Are there any circumstances that you've heard about through the news or TV where you've said to yourself, "I hope that never happens to me” or “I would never want to live like that?" If so, what are they and why do you feel this way about them?
- Who should speak on your behalf if you become so sick you can't speak for yourself?
An alternative approach after introducing the topic of advance care planning is to suggest that the patient review an existing advance care planning educational resource and utilize issues presented in its content to guide discussion and/or worksheets when available to append to an advance directive. (See Additional Readings)
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 more detailed values and preferences to provide a better understanding of her wishes. Copies of completed documents should be provided to every health care clinic/facility where the patient receives care
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 chosen as a spokesperson and what kind of approach to health 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.
What types of advance directives are currently available?
Advance directives were officially inaugurated in 1977 with passage of the Natural Death Act in California. The law allowed patients to direct their physicians to withhold or withdraw life-sustaining treatment when they were terminally ill and death was imminent. In 1992, Washington State passed a similar Natural Death Act. Originally, it only applied to persons who were terminally ill and for whom death was imminent. However, it was later amended to include persons in permanent unconscious conditions and expanded to apply explicitly to discontinuation of artificial hydration and nutrition.
A 1991 federal law, the Patient Self-Determination Act, requires that patients are informed about their right to participate in health care decisions, including their right to have an advance directive. Advance directives fall into two broad categories: instructive and proxy. Instructive directives allow for preferences regarding the provision of particular therapies or classes of therapies. Living wills are the most common examples of instructive directives, but other types of instructive directives, such as no transfusion and no CPR directives are also employed. The proxy directive, generally a Durable Power of Attorney for Health Care (DPAHC), allows for the designation of a spokesperson or surrogate medical decision maker of the patient's choosing. This surrogate decision maker (often referred to as a health care agent) makes health care decisions for the patient in the event she is incapacitated.
Although not actually an advance directive, many states have adopted the use of life-sustaining treatment order forms to facilitate communication about end-of-life wishes with regard to the use of treatments. Most prominent and a model for many states is the POLST, physicians orders for life-sustaining treatment. These orders stay with the patient and are designed to direct care both in the home and outpatient settings, and are used sometimes to facilitate transfers within the hospital.
Although advance directives are usually focused on end-of-life decision making, there is another type of directive for patients with recurrent severe mental health problems. This is the mental health directive or psychiatric advance directive. In this type of directive the patient informs health care providers about their preferences for future mental health care if s/he were to become decisionally incapacitated.
Why are advance directives important to medical care?
The major ethical argument for the use of instructive directives, such as a living will, appeals to the ethical principle of autonomy. The principle of autonomy requires physicians to respect the wishes of competent adult patients. Even after a patient loses the capacity to be autonomous, we can continue to respect autonomy by abiding by the patient’s prior expressed wishes. In this way, patients can continue to participate (indirectly) in their medical care decisions even if they become decisionally incapacitated, i.e., unable to make informed decisions. Instructive directives may extend individual autonomy and help ensure that future care is consistent with previous desires. The living will was created initially to help prevent unwanted, invasive medical care at the end of life. However, the living will also attempts to ensure that patients receive the treatment they want, which may be invasive, end-of-life care. Most importantly, the living will tries to promote patient-centered care.
When a patient becomes incapacitated someone else will be required to make health care decisions. In most states, the patient’s spouse is the legal surrogate. Domestic partnership laws in some states empower non-spouse, registered domestic partners to act as surrogate decision makers. If no spouse is available, state law usually designates the order of surrogate decision makers, usually other family members. In Washington State the order of hierarchy is codified in RCW7.70.065. By designating a health care agent through a DPAHC, the patient's choice of a surrogate decision maker supersedes that of the state. A legal surrogate is particularly valuable for persons in non-traditional relationships or without close family. The health care agent need not be a relative of the patient, though this person should have close knowledge of the patient's wishes and views.
Are advance directives legally binding?
Advance directives are recognized in one form or another by legislative action in all 50 states (in Washington, see RCW 70.122). If the directive is constructed according to the outlines provided by pertinent state legislation, they can be considered legally binding. In questionable cases the medical center's attorney or ethics advisory committee can provide guidance on how to proceed (see also the topics Law and Ethics and Ethics Committees).
When should I refer to a patient's advance directive?
It is best to ask a patient early in his care if he has a living will or other form of advance directive. Not only does this information get included in the patient's chart, but by raising the issue, the patient has an opportunity to clarify his/her wishes with the care providers and loved ones.
However, advance directives take effect only in situations where a patient is unable to participate directly in medical decision making. Appeals to living wills and surrogate decision makers are ethically and legally inappropriate when individuals remain competent to guide their own care. The assessment of decisional incapacity may be difficult at times, is thought to be a responsibility of most physicians, but sometimes may require a psychiatric evaluation.
Some directives are written to apply only in particular clinical situations, such as when the patient has a "terminal" condition or an "incurable" illness. These ambiguous terms mean that directives must be interpreted by caregivers. Some more recent types of instructive directives have attempted to overcome this ambiguity by addressing specific interventions (e.g. blood transfusions or CPR) that are to be prohibited in specified clinical contexts.
What if a patient changes her mind?
As long as a patient remains able to participate in medical decisions, both documents are revocable. Informed decisions by patients with decision-making capacity always supersede a written directive.
What if the family disagrees with a patient's living will?
If there is a disagreement about either the interpretation or the authority of a patient's living will, the medical team should meet with the family and clarify what is at issue. The team should explore the family's rationale for disagreeing with the living will. Do they have a different idea of what should be done (e.g., based on other communication from the patient)? Do they have a different impression of what would be in the patient's best interests, given her values and commitments? Or does the family disagree with the physician's interpretation of the living will? Is there a conflict of interest that may be fueling disagreement between the patient and family members?
These are complex and sensitive situations and a careful dialogue can usually surface many other fears and concerns. However, if the family merely does not like what the patient has requested, they do not have much ethical authority to sway the team. If the disagreement is based on new knowledge, substituted judgment, or recognition that the medical team has misinterpreted the living will, the family has much more say in the situation and most hospitals would defer to the family in these situations. If no agreement is reached, the hospital's Ethics Committee or Ethics Consultation Service should be consulted.
How should I interpret a patient's advance directive?
Living wills generally are written in ambiguous terms and demand interpretation by providers. Terms like "extraordinary means" and "unnaturally prolonging my life" need to be placed in context of the present patient's values in order to be meaningfully understood. The health care agent or a close family member often can help the care team reach an understanding about what the patient would have wanted. Of course, physician-patient dialogue is the best guide for developing a personalized advance directive.
What are the limitations of living wills?
Living wills cannot cover all conceivable end-of-life decisions. There is too much variability in clinical decision making to make an all-encompassing living will possible. Persons who have written or are considering writing advance directives should be made aware of the fact that these documents are insufficient to ensure that all decisions regarding care at the end of life will be made in accordance with their written wishes. Moreover, the language that is often employed in advance directives is frequently imprecise. What seems clear to the author may seem cloudy to others when reviewed in a clinical situation. A partial remedy to this limitation is to strongly encourage patients to communicate preferences and values to both their medical providers and family/surrogate decision makers, and to encourage them to identify a health care agent (through a durable power of attorney for health care) where appropriate.
Another potential limitation of advance directives is possible changes in the patient's preferences over time or circumstance. People often accommodate to disabilities and an old living will may become inconsistent with the patient's revised views about quality of life or other outcomes. This is yet another reason to recommend ongoing communication between patients and their physicians and family members.
Core Clerkship Material:
Robert A. Pearlman, MD, MPH
Adjunct Professor, Department of Medical History and Ethics, and Department of Health Services
University of Washington and the VA Puget Sound Health Care System