Center for Biomedical Ethics

ADVANCE DIRECTIVES (AD) MODULE FOR INTERNAL MEDICINE CLERKSHIP

The goals of this session are to:


1) Understand the ethical basis and practical value of Advance Directives (ADs).
2) Appreciate the different kinds of ADs and the important differences between them.
3) Understand the ethical and legal implications.
4) Improve your skills for discussing ADs with your patients.

It is important that you download the pdf.files listed below re: the Rhode Island Living Wills and Health Care Proxies. It is important that you read them prior to our session.

http://www.lifespan.org/services/ethics/DPAHC/dpahc.pdf
http://www.lifespan.org/services/ethics/LvgWill/livingwill.pdf

Advance directives (ADs) 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 (US) federal law, the Patient Self-Determination Act, requires that patients in most health care institutions are informed about their right to participate in health care decisions, including their right to have an advance directive (AD. This also applies to Nursing Homes. ADs 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. Many Durable Power of Attorney for Health Care forms also allow for general or specific directives that may help guide future medical care.  Both of these types of document can be “advisory” or may have statutory force (i.e. have legal standing. All states have a statutory form.  State specific forms can be found at

http://www.partnershipforcaring.org/Advance/documents_set.html

There is nothing that might be contained in a Living Will that could not be included in the more flexible DPAHC.

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 lack the decision-making capacity, i.e., they become 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. We must be aware, however, of the appropriate (mis)use of the term, “futile.”

When patients become incapacitated someone else will be required to make medical decisions regarding their care. The decision-maker may or may not have legal (or ethical!) standing to make such decisions.  In many jurisdictions, the spouse is given this legal authority by statute. If no spouse is available, many states have laws that designate a hierarchy of potential 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. Active designation of a legal surrogate independent of the legal “default” surrogate may be 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. The proxy cannot be the patient’s physician or other member of the patient’s health care team by statute in most if not all states.

Are advance directives legally binding?


Advance directives are recognized in one form or another by legislative action in all 50 states. As long as the directive is constructed and written according to the legal requirements, 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. The Advance Directives should be considered legally binding even for patients with whom the treating physician was not the one to solicit the Advance Directive. That said, it is reasonable to question the nature and scope of the conversation that led to the creation of the initial document.

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 also by raising the issue the patient has an opportunity to clarify his wishes with the care providers and his family.

Advance directives take effect only in situations where a patient is unable to participate directly in medical decision-making. Determining whether or not a patient has decisional incapacity is often difficult. On occasion, it may involve a psychiatric evaluation. More often than not, however, the primary care physician or other attending (if in a hospital setting) is quite capable of making that 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 caregivers must interpret directives. 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 certain or all clinical contexts, or not including any such specific limitations.

What if a patient changes her mind?


As long as a patient remains competent to participate in medical decisions, AD documents are revocable. Informed decisions by competent patients always supersede any written directive. This is as true in the outpatient setting as it is for the inpatient. Typically a patient would submit a written request to have an AD withdrawn from a medical record or changed in some other way, though even a verbal retraction by a patient with decision-making capacity should be considered valid.

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? Because this kind of disagreement arises not infrequently, it is helpful to ask patients, as they complete their own AD documents, what should happen in the case of such conflict and to discuss their wishes regarding their future care with their families and designated surrogate?

These are complex and sensitive situations and a careful dialogue can often bring to the surface many other fears and concerns. Proxies should base their recommendations regarding care on their understanding of what the patient’s wishes would be in the given clinical situation.  Family who merely do not like what the patient has requested may have limited ethical force to direct medical care. Alternatively, if the disagreement is based on new knowledge, substituted judgment, or recognition that the medical team has misinterpreted the living will, the family’s argument may be much more forceful. If no agreement can be reached, a consultation with the hospital's Ethics Committee might be very useful.

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. While the AD document can be used to indicate “requests” for particular treatments, they are typically used to indicate one’s refusal of particular treatments. 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 useful and 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.

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, the burdens of these treatments have come to outweigh the benefits.



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 truly “futile”; that is, it may have no chance of fulfilling any of the goals sought by the patient. In other cases, “futility” may be defined in relation to the goals of medicine.  As previously mentioned, one must extreme caution if/when the medical team is defining the “goals of medicine” as the patient may not assess the same goals in the same order of priority.  In general, the goals of medicine are to cure if possible, or to palliate symptoms, prevent disease or disease complications, or improve functional status. On occasion, however, there will be a patient for whom merely being “alive” is a crucial goal in and of itself.

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, in the currently prevailing schools of thought 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 patient 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: Advance Directives and surrogate decision makers. As has been described above, ADs are documents that indicate with some specificity the kinds of decisions the patient would like made should he/she 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 their wishes may be very helpful. Some states have laws that recognize a hierarchy of family relationships in determining which family member should be the official "spokesperson," though typically all close family members and significant others are involved in the discussion in order to reach some consensus. The hierarchy in many jurisdictions is as follows:

  • Legal guardian with health care decision-making authority
  • Individual given durable power of attorney for health care decisions
  • Spouse
  • Adult children of patient (all in agreement)
  • Parents of patient
  • Adult siblings of patient (all in agreement)

How should surrogate decision-makers make decisions?

Generally, surrogates should use the patient’s expressed wishes as their first guide.  These may be formal written Advance Directives as discussed above, or specific or general verbal statements about quality of life or burdens of specific treatments.  If no advance directives are available, the proxy should use the principle of substituted judgment by considering what the patient would want in the given situation.  This may require further discussion with others who knew the patient prior to the current period of incapacity.  Occasionally, there is simply no information available about this patient’s wishes and a ‘reasonable person” or “best interest” standard is applied.

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 (criteria reviewed in our “informed consent” module), including the withholding or withdrawal of 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.

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 patient’s 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, many consider these medical treatments like any number of other technology-driven “treatments.”

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. In this scenario, however, one is faced more with the “ethics of triage” and must be extremely careful to avoid assessing the quality and value of one person’s life over another. Such decisions must be carefully considered, and made with the full knowledge of and participation by patients and their surrogate decision makers.


Compiled in part with contributions from the University of Toronto, Joint Centre for Biomedical Ethics.