One of the advances of modern medical technology has been the creation of therapies to sustain life. These therapies, such as artificial nutrition and hydration, mechanical ventilation, dialysis, and cardiopulmonary resuscitation, allow patients to be supported through episodes of reversible illness while the cause of their illness is treated. The use of life-sustaining therapies in patients with curable illness is rarely questioned, but it is not always clear how such therapies should be used in patients with progressive, late stage, incurable disease. In patients with incurable illness, the potential benefits of life-sustaining therapy are not always great enough to justify the burdens the treatment imposes. This may be because the patient feels that his or her current quality of life is low, the expected quality of life after treatment is too low, or the burden of treatment is too great. In these cases, treatments should be withheld or withdrawn. Because withholding or withdrawing life-sustaining therapies is at times the right decision for the patient, it is important that providers understand the ethical and legal consensus involved in making these decisions and can discuss withholding or withdrawing therapies with patients and their families in an accurate and sensitive manner. Moreover, clinicians must be skilled in the palliation of symptoms that may arise when these therapies are withheld or withdrawn.
Epidemiology of Withholding and Withdrawing Life-Sustaining Therapy
Both adult and pediatric patients often die in technologically intensive situations, and it is common for life-sustaining therapies to be withdrawn or withheld before death. One in five adults in the United States receives care in intensive care units (ICUs) before death, and 80% of deaths in ICUs in North America are preceded by limitation of therapy. In U.S. nursing homes, cardiopulmonary resuscitation (CPR) is withheld in more than 60% of all adult patients, a rate that has been steadily increasing; withholding of CPR is more common among whites, women, and patients with dementia. The mortality rate of children admitted to ICU varies from 18% to 43%. More than half of children who die in ICUs in the United States die after life-sustaining therapy is withdrawn or withheld. There is considerable regional variation in withholding and withdrawing of life-sustaining therapies. In the United States, fewer ICU deaths are preceded by forgoing life-sustaining therapy in New York and Missouri than in the Middle Atlantic and Midwest regions.
Forgoing life-sustaining treatment is not an all-or-nothing phenomenon. CPR is commonly withheld while other therapies are provided. One study of adult patients receiving prolonged mechanical ventilation reported that 35% had orders to withhold CPR. In a study of children who died in the ICU, 40% had a life-sustaining treatment withdrawn before death, but another 20% to 25% had a do not resuscitate (DNR) order before death. Although DNR orders are common in nursing homes, fewer than 5% of patients have orders to forgo hospitalization and about 10% have orders to restrict artificial feeding. A study of adults indicates that when multiple therapies are withdrawn in the ICU, they are withdrawn in a specific order: blood products first, followed by hemodialysis, vasopressors, mechanical ventilation, and finally antibiotics, nutrition, and hydration.
In the ICU setting, discussions about limiting therapy are usually initiated by physicians, and decisions to withhold or withdraw therapy are almost always made by a surrogate or substitute decision maker (SDM) because the patient is too ill to participate. SDMs agree with recommendations to withhold or withdraw therapy most of the time, although in some cases multiple meetings are held before a decision to withdraw therapy is made. Withdrawal is usually initiated within hours after the decision is made, and most patients die within a few hours, although a few survive to hospital discharge. Despite an SDMs agreement with physician recommendations, conflict frequently occurs between families and medical staff. Families may feel they are not given enough information about the patient’s condition, or they may disagree with the manner in which providers discuss withholding or withdrawing therapies.
Ethical Consensus Regarding Withholding and Withdrawing Therapies
An ethical consensus regarding withholding and withdrawing of medical treatments emerged as the use of life-sustaining therapies became more common in the latter half of the 20th century. The current consensus was crystallized in the 1983 report on forgoing life-sustaining treatment that was issued by the President’s Commission, a group mandated by United States Congress to study ethical problems in medicine and research. The Commission examined who should decide whether to withhold or withdraw life-sustaining therapies and the criteria by which the decisions should be made. The Commission found that, ethically, the withholding or withdrawal of life-sustaining therapies is no different than the withholding or withdrawal of other medical therapies. Thus, the withholding or withdrawal of life-sustaining therapies does not require a unique decision-making process. Further, the same criteria should be used regardless of whether a treatment was withdrawn or not started in the first place. Similar support for the ethics and legality of withdrawing and withholding these treatments exists in Canada.
The primary factor driving the decision-making process should be patient self-determination, or autonomy. When patients lack the capacity to make decisions, a surrogate should be used with the goal of preserving the patient’s autonomy by replicating the decisions the patient would have made. When the patient’s wishes are not clear, a surrogate who knows the patient and his or her values and interests should make decisions. Surrogates should base their decision making either on what the patient had said they would want (best interest) or on what, given their knowledge of the patient, they feel the patient would have wanted (best interest). Patients or their surrogates and clinicians should engage in the process of shared decision making to promote patient autonomy. What constitutes quality of life is defined from the patient’s perspective, and the physician’s role is to recommend treatment consistent with the patient’s goals and to explain the benefits and burdens of therapy. The patient or surrogate has the authority to accept or reject the treatment plan. Patients and surrogates do not have the right to specify which therapies they receive, and physicians are not obligated to offer treatment they believe would be ineffective or inconsistent with professional treatment standards.
The President’s Commission also examined four moral distinctions that traditionally had been used to determine whether life-sustaining therapies should be forgone:
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Whether death occurs as a result of an action on the part of the clinician as opposed to an omission
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Whether a treatment is withheld as opposed to withdrawn
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Whether a consequence of a treatment is intended or unintended
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Whether treatment is ordinary (usual care) as opposed to extraordinary (heroic measures)
The Commission found that these four distinctions oversimplify both the clinical reality and the physician’s moral responsibility and therefore are not ultimately useful in guiding decision making.
Decisions about life-sustaining therapies in children are unique in several ways. First, because children are not yet felt to have decision-making capacity, surrogates usually make all decisions about their medical care. (In certain situations, children can make decisions themselves, such as when they are emancipated minors. The definition of emancipated minors varies among jurisdictions but generally includes factors such as whether the child is self-supporting, married, pregnant, or a parent; in the military; or declared by a court to be emancipated.) Second, because many children have not yet had developed values and preferences, it may not be possible to base decisions on what they would have wanted. Therefore, the child’s best interest is often used as a standard. This is challenging because different family members and providers may disagree about what is in the child’s best interest.
When a surrogate gives consent for treatments for a child, the concept of assent can be used to incorporate older children’s perspective into decision making. Assent involves similar elements to informed consent, including information giving, assessment of understanding, and assessment of agreement to commence on a plan of care, with modifications for the developmental stage of the child; however, it lacks the formal elements of consent. Though children may not be able to weigh all the risks and benefits of a therapy, and thus fulfill the requirements of informed consent, they can talk about their opinions and feelings about their medical treatment and its impact on their life. The child’s perspective is taken into consideration in decision making.
Legal Consensus Regarding Withholding and Withdrawing Therapies
Legal Consensus in the United States
In the United States, a legal consensus has developed over the past 30 years regarding withholding and withdrawing medical therapies (see ). This consensus can be described as follows:
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Patients have a right to refuse any medical treatment, even if the refusal results in their death.
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There is no legal distinction between withholding and withdrawing therapies.
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Decisions to withhold or withdraw medical interventions are usually made in the clinical setting, and courts rarely need to be involved.
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When patients die after they request that life-sustaining therapies be withheld or withdrawn, their death is considered neither homicide nor suicide, and their providers are not held liable.
The right of patients to refuse life-sustaining therapy has been repeatedly and consistently upheld. The sources of the right to refuse medical treatment lie in the common law doctrine of battery and in the constitutional right to liberty. Battery is defined as the unwanted invasion of one’s bodily integrity, and this includes undesired medical therapy. The law of battery provides legal recourse for persons whose bodily integrity has been violated against their will. A person found guilty of battery is subject to punishment by fines or imprisonment and, in the case of health care providers, by suspension or revocation of licensure. The U.S. Supreme Court and other courts have suggested a constitutional basis for the right to be free from unwanted interference with bodily integrity, based on the protection of liberty contained in the 14th Amendment.
In patients who are unable to consider their own medical situation and voice their wishes, autonomy is preserved for them through the use of advance directives and surrogate decision makers (see also Chapter 20 ). While competent, patients may voice their wishes through oral or written directives (also called living wills). These directives are helpful in that they document the patient’s wishes. However, they may not address all clinical situations, because it is difficult to anticipate all possible scenarios when writing the directive. Further, it is often difficult to apply them in clinical situations. For instance, the phrase “if there is no hope of recovery…,” without a description of what level of recovery would be acceptable to a patient, does not elucidate a patient’s desires sufficiently. Thus, even when an advance directive is present, a surrogate is still used.
Most legal cases regarding withholding and withdrawing therapies involve incompetent or incapable patients. Competence is a legal term that defines the decision-making capacity of an individual who is able to comprehend the treatment in question and its risks, benefits, and consequences, as well as the alternatives. Every adult is legally presumed to be competent unless proved otherwise. In medical terminology, the term capacity is often used. Though incapable patients have the same right to forgo life-sustaining therapy as competent patients, controversies have arisen related to who should make decisions for incapable patients and what type and level of proof of the patient’s wishes is required.
Who Should Make Decisions about Life-Sustaining Therapies for Incapable Patients?
A patient may appoint a surrogate (durable power of attorney) before becoming incapable. If an incapable patient has not designated a surrogate, the choice is guided by either state law or by the clinician’s judgment regarding who best knew the patient. Some states have legally specified a hierarchy of surrogates. For married couples, spouse is generally the first decision maker, followed by eldest adult child, parents, siblings, and then other relatives and people who know the patient. When no one is identified who knows the patient, a court-appointed guardian or physicians may make decisions. This order of designation does not always accomplish the goal of surrogate decision making, which is to represent the patient’s perspective by involving the person who knew him or her best in decision making. When families disagree on surrogacy, disputes can arise about who should make decisions for the patient, as the Terri Schiavo case illustrated.
The Evidence Surrogates Should Use to Guide their Decision Making
Two standards are used to establish the patient’s wishes: subjective judgment and substituted judgment . The subjective judgment standard requires the patient to have stated verbally or in writing what he or she would want done in the specific situation in question. The substituted judgment standard does not require that the patient’s actual wishes be established, but rather that the designated surrogate be familiar enough with the patient’s values and beliefs to infer what he or she would have decided. A third standard is the best interest standard, in which the surrogate and/or physician make decisions about withholding or withdrawing therapies guided by what they feel to be the patient’s best interest. States are allowed to set the type and level of proof of an incapable patient’s wishes that life-sustaining therapy be withheld or withdrawn. The subjective standard is preferred by states because it is believed to reflect the patient’s wishes most closely. Because a patient’s actual wishes are often not known, however, most states allow a substituted judgment standard. In some states, if the evidence of the patient’s values and beliefs is insufficient to permit the use of a substituted judgment standard, a best-interest standard may be used. If the type and level of proof designated by the state are not met, life-sustaining therapies cannot be withdrawn. The Cruzan case emphasizes these points (see ).
Nancy Cruzan , a woman from Missouri in her 30s, entered a persistent vegetative state after a car accident in 1983. Four years later, her parents and husband requested that her feeding tube be withdrawn. After opposition from the director of the hospital, the probate judge, and the Missouri Supreme Court (all of which denied their request for removal of the feeding tube), her case was eventually brought before the U.S. Supreme Court, which upheld her right to refuse unwanted medical treatment but also ruled that states have a right to protect the interests of incapable persons. States are thus permitted, although not required, to specify the type and level of evidence required to document an incapable person’s wishes.
Laws on Withholding and Withdrawing Therapies in Other Countries
The comparative legal literature about withholding and withdrawing of therapies is limited. Mendelson and Jost studied Australia, Canada, France, Germany, Japan, the Netherlands, Poland, and the United Kingdom and found that, in all these countries, competent patients have the right to refuse any medical therapy, even if doing so may result in their death. However, the laws differ in the legality of withholding and withdrawing therapies from incapable patients. A subjective or substitute judgment standard is employed in some countries, whereas others use a best-interest standard. In some countries, the patient’s physician may act as the surrogate and may withhold or withdraw therapies on the basis of his or her evaluation of what is in the patient’s best interest. Some courts have also found that life-support measures need not be continued for incapable patients. A seminal case involving Anthony Bland, a young man in a persistent vegetative state who was sustained with a feeding tube, was decided in the United Kingdom in 1993. The House of Lords ruled that incapable patients should be treated according to their best interests when their wishes are not known. Life-support measures, including artificial nutrition and hydration, are not in the best interest of a patient who cannot be returned to his previous state; thus, such treatments can be stopped.
Discussing Withholding and Withdrawing Therapies with Patients and Families
Many of the key points involved in discussing withholding and withdrawing therapies are common to general communication (see Chapter 3 ). A six-step protocol for discussing withholding and withdrawing of therapies, adapted from recommendations for communicating serious information, is presented in the following subsections and in Table 22-1 . Depending on the patient’s or surrogate’s understanding and acceptance of the current situation and the clarity of overall goals of care, the following steps may be covered in one conversation or may require several discussions.
| 1. Establish the Setting | |
| Review relevant information. | Patient’s prognosis Outcome of therapy in question in this patient |
| Make sure the right people are there. | Patient’s or surrogate’s loved ones Staff |
| Find a comfortable, quiet location. | Places for everyone to sit Seclusion from others Ability of everyone to see and hear each other |
| Introduce everyone at the beginning. | “Could we start by introducing everyone?” “How are you related to Ms. Jones?” |
| Introduce the topic for discussion. | “I was hoping we could talk about the next steps in your care.” |
| 2. Review the Patient’s Situation | |
| Elicit the patient’s or surrogate’s understanding. | “Can you tell me your understanding of what is going on with your medical situation?” “What have the other doctors told you about your dad’s medical situation?” |
| Educate as needed. | “That’s right, the cancer has spread. What that means is that although there are treatments to control the symptoms, we can’t cure the cancer.” |
| 3. Review Overall Goals of Care | |
| Elicit goals from the patient or surrogate. | “Did you talk with Dr. Smith about what the goal of your treatments should be?” |
| Summarize to confirm. | “So it sounds like the most important thing is to make sure your father is comfortable.” |
| 4. Relate Your Recommendation for Withholding or Withdrawing Treatment | |
| Introduce the specific treatment to be discussed. | “Today I wanted to talk about what we should do if your breathing gets worse, including whether we should use a breathing machine.” |
| Ask about previous experience with the intervention in question. | “Has anyone ever asked you about being on a breathing machine?” |
| Describe the intervention in question and its benefits and burdens for this patient. | “Based on what we’ve talked about—the fact that this cancer isn’t curable—the chance of being able to come off the breathing machine would be very low.” |
| State your recommendation. | “I recommend that if your breathing gets worse we don’t put you on a breathing machine.” |
| Describe how you feel your plans are consistent with the patient’s overall goals. | “The reason I think we shouldn’t is that you said you wouldn’t want your life to be prolonged if there wasn’t a good chance of recovering to where you are now.” |
| Describe what treatments will be provided. | “We will use medicines to improve your breathing and comfort.” |
| 5. Respond to Patient or Surrogate Reaction | |
| Acknowledge emotions. | “It’s hard getting to this point, isn’t it?” |
| Is the recommendation consistent with patient’s values and goals? | “How does that plan sound to you?” |
| Answer questions. | “I’ll be around if you think of things you want to ask me later, but are there questions can I answer now?” |
| 6. Summarize and Establish Follow-Up | |
| Summarize. | “Good. So we’ll keep the antibiotics going and give you medicines if the breathing gets worse, but we won’t put you on a breathing machine.” |
| Explain the next steps in treatment. | “We’ll plan on keeping you here in the hospital for the next few days and see how things go.” |
| Arrange for the next meeting. | “I’ll see you tomorrow on rounds. Please have your nurse page me if you need anything before then.” |
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