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. Related issues include Advance care planning and termination of life sustaining treatment. Refer to the following notes for more information.
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 becomes 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.
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 and provides advance care planning
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.
Do not resuscitate orders (DNR)
On the medicine wards, you will come across patients who have a "Do-Not-Resuscitate" order on their chart. You will also be in situations where you are asked to discuss with a patient whether they want to or should have resuscitation following a cardiac arrest or life-threatening arrhythmia. Like many other medical decisions, deciding whether or not to resuscitate a patient who suffers a cardiopulmonary arrest involves a careful consideration of the potential likelihood for clinical benefit with the patient's preferences for the intervention and its likely outcome. Decisions to forego cardiac resuscitation are often difficult because of real or perceived differences in these two considerations
When should CPR be administered?
Cardiopulmonary resuscitation (CPR) is a set of specific medical procedures designed to establish circulation and breathing in a patient who's suffered an arrest of both. CPR is a supportive therapy, designed to maintain perfusion to vital organs while attempts are made to restore spontaneous breathing and cardiac rhythm.
If your patient stops breathing or their heart stops beating in the hospital, the standard of care is to perform CPR in the absence of a valid physician's order to withhold it. Similarly, paramedics responding to an arrest in the field are required to administer CPR. Since 1994 in Washington state, patients may wear a bracelet that allows a responding paramedic to honor a physician's order to withhold CPR.
When can CPR be withheld?
Virtually all hospitals have policies which describe circumstances under which CPR can be withheld. Two general situations arise which justify withholding CPR:
when CPR is judged to be of no medical benefit (also known as "medical futility"; see below), and
when the patient with intact decision making capacity (or when lacking such capacity, someone designated to make decisions for them) clearly indicates that he / she does not want CPR, should the need arise.
When is CPR "futile"?
CPR is futile when it offers the patient no clinical benefit. When CPR offers no benefit, you as a physician are ethically justified in withholding resuscitation. Clearly it is important to define what it means to "be of benefit." The distinction between merely providing measurable effects (e.g. normalizing the serum potassium) and providing benefits is helpful in this deliberation.
When is CPR not of benefit?
One approach to defining benefit examines the probability of an intervention leading to a desirable outcome. CPR has been prospectively evaluated in a wide variety of clinical situations. Knowledge of the probability of success with CPR could be used to determine its futility. For instance, CPR has been shown to be have a 0% probability of success in the following clinical circumstances:
In other clinical situations, survival from CPR is extremely limited:
Hypotension (2% survival)
Renal failure (3%)
Homebound lifestyle (4%)
Age greater than 70 (4% survival to discharge from hospital)
How should the patient's quality of life be considered?
CPR might also seem to lack benefit when the patient's quality of life is so poor that no meaningful survival is expected even if CPR were successful at restoring circulatory stability. Judging "quality of life" tempts prejudicial statements about patients with chronic illness or disability. There is substantial evidence that patients with such chronic conditions often rate their quality of life much higher than would healthy people. Nevertheless, there is probably consensus that patients in a permanent unconscious state possess a quality of life that few would accept. Therefore, CPR is usually considered "futile" for patients in a persistent vegetative state.
If CPR is deemed "futile," should a DNR order be written?
If CPR is judged to be medically futile, this means that you as the physician are under no obligation to provide it. Nevertheless, the patient and/or their family should still have a role in the decision about a Do-Not-Resuscitate (DNR) order. This involvement stems from respect for all people to take part in important life decisions, commonly referred to as respect for autonomy or respect for person.
In many cases, the patient/family, upon being given a caring but frank understanding of the clinical situation, will agree with the DNR order. In such cases a DNR order can be written. Each hospital has specific procedures for writing a valid DNR order. In all cases, the order must be written or cosigned by the Attending Physician.
What if CPR is not futile, but the patient wants a DNR order?
As mentioned above, a decision to withhold CPR may also arise from a patient's expressed wish that CPR not be performed on her. If the patient understands her condition and possesses intact decision making capacity, her request should be honored. This position stems from respect for autonomy, and is supported by law in many states that recognize a competent patient's right to refuse treatment.
What if the family disagrees with the DNR order?
Ethicists and physicians are divided over how to proceed if the family disagrees If there is disagreement, every reasonable effort should be made to communicate with the patient or family. In many cases, this will lead to resolution of the conflict. In difficult cases, an ethics consultation can prove helpful. Nevertheless, CPR should generally be provided to such patients, even if judged futile.
Advance Directives and Surrogacy
What if the patient is unable to say what his/her wishes are?
In some cases, the decision about CPR occurs at a time when the patient is unable to participate in decision making, and hence cannot voice a preference. There are two general approaches to this dilemma: Advance directives and surrogate decision makers.
Advance Directive: This has been discussed above but in summary it is a document which indicates with some specificity the kinds of decisions the patient would like made should he be unable to participate. In some cases, the document may spell out specific decisions (e.g. Living Will), while in others it will designate a specific person to make health care decisions for them (i.e. Durable Power of Attorney for Health Care). There is some controversy over how literally living wills should be interpreted. In some cases, the document may have been drafted in the distant past, and the patient's views may have changed. Similarly, some patients do change their minds about end-of-life decisions when they actually face them. In general, preferences expressed in a living will are most compelling when they reflect long held, consistently stable views of the patient. This can often be determined by conversations with family members, close friends, or health care providers with long term relationships with the patient.
Surrogate decision maker: In the absence of a written document, people close to the patient and familiar with his wishes may be very helpful. The law recognizes a hierarchy of family relationships in determining which family member should be the official "spokesperson," though generally all close family members and significant others should be involved in the discussion and reach some consensus. The hierarchy is as follows:
Legal guardian with health care decision-making authority
Individual given durable power of attorney for health care decisions
Adult children of patient (all in agreement)
Parents of patient
Adult siblings of patient (all in agreement)
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
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.
Termination of Life-Sustaining Treatment
On the medicine wards, you will have patients who are receiving treatments or interventions that keep them alive, and you will face the decision to discontinue these treatments. Examples include dialysis for acute or chronic renal failure and mechanical ventilation for respiratory failure. In some circumstances, these treatments are no longer of benefit, while in others the patient or family no longer want them.
When is it justifiable to discontinue life-sustaining treatments?
If the patient has the ability to make decisions, fully understands the consequences of their decision, and states they no longer want a treatment, it is justifiable to withdraw the treatment.
Treatment withdrawal is also justifiable if the treatment no longer offers benefit to the patient.
How do I know if the treatment is no longer "of benefit?"
In some cases, the treatment may be "futile"; that is, it may no longer fulfill any of the goals of medicine. In general, these goals are to cure if possible, or to palliate symptoms, prevent disease or disease complications, or improve functional status. For example, patients with severe head trauma judged to have no chance for recovery of brain function can no longer benefit from being maintained on a mechanical ventilator. All that continuation would achieve in such a case is maintenance of biologic function. In such a case, it would be justifiable to withdraw mechanical ventilation.
Do different standards apply to withholding and withdrawing care?
Many clinicians feel that it is easier to not start (withhold) a treatment, such as mechanical ventilation, than to stop (withdraw) it. While there is a natural tendency to believe this, there is no ethical distinction between withholding and withdrawing treatment. In numerous legal cases, courts have found that it is equally justifiable to withdraw as to withhold life-sustaining treatments. Also, most bioethicists, including the President's Commission, are of the same opinion.
Does the patients have to be terminally ill to refuse treatment?
Though in most cases of withholding or withdrawing treatment the patient has a serious illness with limited life expectancy, the patient does not have to be "terminally ill" in order for treatment withdrawal or withholding to be justifiable.
Most states, including Washington State, have laws that guarantee the right to refuse treatment to terminally ill patients, usually defined as those having less than 6 months to live. These laws do not forbid other patients from exercising the same right. Many court cases have affirmed the right of competent patient to refuse medical treatments.
What if the patient is not competent?
In some cases, the patient is clearly unable to voice a wish to have treatment withheld or withdrawn. As with DNR orders, there are two general approaches to this dilemma: advanced directives and surrogate decision makers discussed above
What if I'm not sure if the patient is competent?
Sometimes the patient is awake, alert, and conversant, but their decisions seem questionable or irrational. First, it is important to distinguish an irrational decision from simple disagreement. If you feel strongly that a certain course of action is "what's best" for the patient, it can seem irrational for them to disagree. In these situations, it is critical to talk with the patient and find out why they disagree.
Patients are presumed to be "competent" to make a treatment decisions. Often it's better to say they have "decision making capacity" to avoid confusion with legal determinations of competence. In the courts, someone's competence is evaluated in a formal, standardized way. These court decisions do not necessarily imply anything about capacity for making treatment decisions. For example, an elderly grandfather may be found incompetent to manage a large estate, but may still have intact capacity to make treatment decisions.
In general, the capacity to make treatment decisions, including to withhold or withdraw treatment, is considered intact if the patient:
understands the clinical information presented
appreciates his/her situation, including consequences with treatment refusal
is able to display reason in deliberating about their choices
is able to clearly communicate their choice.
If the patient does not meet these criteria, then their decision to refuse treatment should be questioned, and handled in much the same way as discussed for the clearly incompetent patient. When in doubt, an ethics consultation may prove helpful.
Is a psychiatry consult required to determine decision making capacity?
A psychiatry consult is not required, but can be helpful in some cases. Psychiatrists are trained in interviewing people about very personal, sensitive issues, and thus can be helpful when patients are facing difficult choices with fears or concerns that are difficult to talk about. Similarly, if decision making capacity is clouded by mental illness, a psychiatrist's skill at diagnosis and potential treatment of such disorders can be helpful.
Does depression or other history of mental illness mean a patient has impaired decision making capacity?
Patients with active mental illness including depression should have their decision making capacity evaluated carefully. They should not be presumed to be unable to make treatment decision. In several studies, patients voiced similar preferences for life-sustaining treatments when depressed as they did after treatment of their depression.
Depression and other mental disorders should prompt careful evaluation, which may often be helped by psychiatry consultation.
Is it justifiable to withhold or withdraw food or fluids?
This question underscores the importance of clarifying the goals of medical treatment. Any medical intervention can be withheld or withdrawn, including nutrition and IV fluids. At all times, patients must be given basic humane, compassionate care. They should be given a comfortable bed, human contact, warmth, and be kept as free from pain and suffering as possible. While some believe that food and fluids are part of the bare minimum of humane treatment, both are still considered medical treatments. Several court cases have established that it is justifiable to withhold or withdraw food and fluids.
Is it justifiable to withhold or withdraw care because of costs?
It is rarely justifiable to discontinue life-sustaining treatment for cost reasons alone. While we should always try to avoid costly treatments that offer little or no benefit, our obligation to the patient outweighs our obligation to save money for health care institutions. There are rare situations in which costs expended on one terminally ill patient could be clearly better used on another, more viable patient. For instance, a terminally ill patient with metastatic cancer and septic shock is in the last ICU bed. Another patient, young and previously healthy, now with a self-limited but life-threatening illness, is in the emergency room. In such cases, it may be justifiable to withdraw ICU treatment from the terminally ill patient in favor of the more viable one. Even so, such decisions must be carefully considered, and made with the full knowledge of patients and their surrogate decision makers.
Summary of Methodology
In a collaborative effort, 3 clinical ethicists (a philosopher - Jonsen, a physician - Siegler, and a lawyer - Winslade) have developed a method with which to work through difficult cases. The process can be thought of as the "ethics workup," similar to the "History and Physical" skills that all medical students come to use when learning how to "workup" a patient's primary complaints. While this method has deep philosophical roots, what clinicians who use this method like about it is the ease with which it fits into how they normally think about tough medical cases.
Jonsen, Siegler and Winslade have identified four "topics" that are basic and intrinsic to every clinical encounter. Focusing our discussion around these four topics gives us a way to organize the facts of the particular case at hand.:
Medical Indications - all clinical encounters include a review of diagnosis and treatment options
Patient Preferences - all clinical encounters occur because a patient presents before the physician with a complaint. The patient's values are integral to the encounter.
Quality of Life - the objective of all clinical encounters is to improve, or at least address, quality of life for the patient
Contextual Features - all clinical encounters occur in a wider context beyond physician and patient, to include family, the law, hospital policy, insurance companies, and so forth.
These four topics are present in every case. In the interest of consistency, the order of the review of topics remains the same (again, much like the review of systems in a complete H&P), yet no topic bears more weight than the others. Each will be evaluated from the perspective of the facts of the case at hand.
Once the details of a case have been outlined according to the four topics there are a series of questions that the clinician should ask:
What is at issue?
Where is the conflict?
What is this a case of? Does it sound like other cases you may have encountered? (e.g., Is it a case of "refusal of potentially life-sustaining treatment by a competent patient"?)
What do we know about other cases like this one? Is there clear precedent? If so, we call this a paradigm case. A paradigm case is one in which the facts of the case are very clear cut and there has been much professional and/or public agreement about the resolution of the case.
How is the present case similar to the paradigm case? How is it different? Is it similar (or different) in ethically significant ways?
The resolution in any particular case will depend on the facts of that case.
After analyzing a difficult case in this way, clinicians are usually able to think clearly about what is at issue and to identify the best course of action available to them. If a best course of action remains elusive, a formal ethics consultation can be helpful.
The following diagram can be used to conceptualize some of the issues discussed above.
Consider each medical condition and its proposed treatment. Ask the following questions:
Does it fulfill any of the goals of medicine?
With what likelihood?
If not, is the proposed treatment futile?
Address the following:
What does the patient want?
Does the patient have the capacity to decide? If not, who will decide for the patient?
Do the patient's wishes reflect a process that is
Quality of Life:
Describe the Patient's quality of life in the patient's terms.
What is the patient's subjective acceptance of likely quality of life?
What are the views of the care providers about the quality of life?
Is quality of life "less than minimal?" (i.e., qualitative futility)
Social, legal, economic,and institutional circumstances in the case that can:
influence the decision
be influenced by the decision
e.g., inability to pay for treatment; inadequate social support