NOTE: The UW Dept. of Bioethics & Humanities is in the process of updating all Ethics in Medicine articles for attentiveness to the issues of equity, diversity, and inclusion. Please check back soon for updates!
Author:
Clarence H. Braddock III, MD, MPH
Project Director, Bioethics Education Project
Faculty, Departments of Medicine and Bioethics and Humanities
Core clerkship material for: Internal Medicine
Topics addressed
- When is it justifiable to discontinue life-sustaining treatments?
- How do I know if the treatment is no longer "of benefit?"
- Do different standards apply to withholding and withdrawing care?
- Do patients have to be terminally ill to refuse treatment?
- What if the patient is not competent?
- What if I'm not sure if the patient is competent?
- Is a psychiatry consult required to determine decision making capacity?
- Does depression or other history of mental illness mean a patient has impaired decision making capacity?
- Is it justifiable to withhold or withdraw food or fluids?
- Is it justifiable to withhold or withdraw care because of costs?
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: Advance Directives and surrogate decision makers.
Advance Directive:This is a document which indicates 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. (See Advance Care Planning.) 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
- Spouse
- Adult children of patient (all in agreement)
- Parents of patient
- Adult siblings of patient (all in agreement)
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.