1
2 hours
Florida Heart CPR*
ADVANCE CARE PLANNING & ADVANCE DIRECTIVE
Objectives: Upon Completion of this course the student will know the following:
· What types of advance directives are currently available?
· Why are advance directives important to medical care?
· Are advance directives legally binding?
· When should I refer to a patient's advance directive?
· What if a patient changes her mind?
· What if the family disagrees with a patient's living will?
· How should I interpret a patient's advance directive?
· What are the limitations of living wills?
· How is advance care planning different from advance directives?
· What are the goals and expected outcomes of advance care planning?
· Who should I approach for advance care planning?
· When and where should I initiate advance care planning?
· How can I raise these issues without scaring patients?
· Are there some questions that I could use for advance care planning?
· How should I advise a patient if she doesn't have anyone to name as a proxy?
· How should I advise a patient if he believes that some family members will disagree with his wishes?
Advance directives are usually 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.
What types of advance directives are currently available?
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 surrogate medical decision maker of the patient's choosing. This surrogate decision maker makes medical care decisions for the patient in the event she is incapacitated.
Why are advance directives important to medical care?
The major argument for the use of instructive directives, such as a living will, is that it allows an individual to participate indirectly in future 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 to help prevent unwanted and ultimately futile invasive medical care at the end-of-life.
When patients become incapacitated someone else will be required to make medical decisions regarding their care. Generally a spouse is the legal surrogate. If no spouse is available, the state law designates the order of surrogate decision makers, usually other family members. By designating 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 DPAHC 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 . 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 .
When should I refer to a patient's advance directive?
It is best to ask a patient early on in his care if he has a living will, or other form of advance directives. 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 wishes with the care providers and his family.
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 is often difficult and may involve a psychiatric evaluation and, at times, a legal determination.
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. More recent forms of instructive directives have attempted to overcome this ambiguity by either addressing specific interventions (e.g. blood transfusions or CPR) that are to be prohibited in all clinical contexts.
What if a patient changes her mind?
As long as a patient remains competent to participate in medical decisions, both documents are revocable. Informed decisions by competent patients always supersede any 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? 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?
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 power 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. If no agreement is reached, the hospital's Ethics Committee 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. More recent forms of instructive directives have attempted to overcome this ambiguity by addressing specific interventions (e.g., blood transfusions or CPR) to be withheld. The DPAHC 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. They should be strongly encouraged to communicate preferences and values to both their medical providers and family/surrogate decision makers.
Another potential limitation of advance directives is possible changes in the patient's preferences over time or circumstance. A 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 that patients communicate with their physicians and family members about their end-of-life wishes.
Case 1
An elderly man with end-stage emphysema presents to the emergency room awake and alert and complaining of shortness of breath. An evaluation reveals that he has pneumonia. His condition deteriorates in the emergency room and he has impending respiratory failure, though he remains awake and alert. A copy of a signed and witnessed living will is in his chart stipulates that he wants no "invasive" medical procedures that would "serve only to prolong my death." No surrogate decision maker is available.
Should mechanical ventilation be instituted?
Advance Directives:
Case 1 Discussion
If the patient has remained awake and alert, his living will is irrelevant to medical decision making. The potential risks and benefits of mechanical ventilation need to be presented to the patient. If he refuses this therapy with an understanding of the consequences, his wishes should be honored. If he opts for mechanical ventilation, it should be instituted when it becomes medically necessary. The presence of a living will or other advance directive does not obviate the responsibility to involve a competent patient in medical decision making.
Advance Directives:
Case 2
The same patient described in Case 1 presents confused and somnolent.
Should mechanical ventilation be instituted?
Advance Directives:
Case 2 Discussion
If the man has deteriorated to the point that he can no longer communicate, his living will may be a helpful guide to decision making. The language of the directive, however, is difficult to interpret in this case. Pneumonia represents a potentially reversible condition from which the patient may recover fully. Mechanical ventilation does not serve only to "prolong death" but offers a significant chance to return to his previous level of functioning. Most patients with even end-stage emphysema can be successfully weaned from mechanical ventilation. The intent of the directive, whether to avoid intubation and ventilation at all costs or simply to withhold such therapies when they are clearly futile, is not evident. In the absence of other information to aid the decision, mechanical ventilation should be instituted, with the plan that it be discontinued if it becomes evident that the patient cannot be weaned.
Advance Care Planning
Advance 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.
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.