Guidelines on Foregoing Life-Sustaining Treatment
To clarify guidelines for foregoing life-sustaining treatment at Children's Hospital Colorado
- Life-sustaining medical treatment (LSMT) encompasses all interventions that may prolong the life of patients. Although LSMT includes the dramatic measures of contemporary practice such as organ transplantation, respirators etc., it also includes less technically demanding measures such as antibiotics, chemotherapy, and nutrition and hydration provided by medical means.
- The term “forego” refers to both stopping a treatment already begun as well as not starting a treatment. Although many health care professionals feel reluctant to discontinue LSMT, most philosophical and legal commentators find no important ethical or legal distinction between not instituting a treatment and discontinuing treatment already initiated. Misunderstanding about moral or legal consequences of stopping therapy may keep clinicians from beginning treatments that may help some patients, particularly when great uncertainty prevails. An alternative approach might be to consider initiating interventions that, if they later prove unhelpful, may be stopped.
- Most patients who have the need for LSMT have many physicians, therapists, nurses and other hospital personnel involved in their care. It is imperative for good care to have clear communication with the patient and family throughout the process of decision making when the possibility of foregoing treatment is being considered. The more complicated the situation, the more attention should be paid to collaboration among all those participating in the care. It is recommended that one attending physician be designated as the spokesperson for the health care team and be responsible for discussing treatment options with the patient/family/surrogate decision maker. When the health care team is unable to agree on a treatment strategy the physician team leader should attempt to resolve existing differences through independent consultants, reliance on reference data, or involvement of the Ethics Consult Team. There may be more than one acceptable approach to care to be presented to the patient/family for their consideration and opinion.
Statement of General Principles
- Presumption in Favor of Treatment: Children's Hospital Colorado believes that physicians should provide life-sustaining medical care in conformity with current medical, ethical, and legal norms. Physicians should remember that two broad principles guide the implementation of therapy. First, beneficence suggests that clinicians justify the use of treatments based on the benefits they provide, not simply on the ability to employ them. The related notion of nonmaleficence reminds physicians to consider potential harm to patients. Harm includes obvious physical problems such as pain but may also include psychological, social, and economic consequences. Second, self-determination or autonomy accepts the likelihood that different persons may judge benefits differently. Our social system generally grants patients and families wide discretion in making their own decisions about health care and in continuing, limiting, declining, or discontinuing treatment, whether life-sustaining or otherwise. Medical professionals should seek to override family wishes only when those views clearly conflict with the interests of the child.
- Right to Refuse Treatment: In Colorado, children who are considered emancipated may have the right to refuse unwanted medical interventions. By statute emancipated minors are those who have graduated from high school, are members of the armed forces, are married, or are living apart and are financially independent from their parents. Most courts that have considered the issue also recognize that incompetent patients, including children, need not receive all possible treatments in each case. Parents or surrogate decision makers may exercise the right to refuse medical treatment for non-autonomous children when appropriate.
- Decisions to Forgo Are Particular to Specific Treatment: A decision to limit, decline, discontinue, or otherwise forgo a particular treatment or procedure applies specifically to that treatment or procedure. Such decisions do not imply that any other procedures or treatments are to be foregone, without a specific decision to do so. Comfort measures and pain control are to be preserved as an expression of respect for the patient. To determine the appropriateness of a therapy, ask if it furthers the overall goals of treatment.
- Care Provider Obligations: Individual physicians or hospital personnel who generally decline to participate in the limitation or withdrawal of therapy should communicate their position to the physician spokesperson as soon as that information becomes relevant. No care giver may abandon the patient, and may withdraw from participation in care only when an appropriate substitute has been arranged.
- Availability of Guidelines to Patients and/or Families: Educational material with substantially the same message as these guidelines should be made available, whenever relevant, to patients and/or their families.
- Presumption Against Judicial Review: Families and health care professionals should work together to make decisions for patients who lack decision making capacity. Recourse to the courts should be reserved for the occasions when adjudication is clearly required by law as in some child abuse situations or when concerned parties have disagreements that they cannot resolve.
Informing for Decision Making
- Physicians have the responsibility to provide the patient, parents, or other appropriate decision makers with adequate information about applicable therapeutic and diagnostic options.
- This information should include the risks, discomforts, side effects, and estimated financial and other costs of treatment alternatives, the potential benefits, and the likelihood, if known, of whether the treatment will succeed.
- The physician should also provide advice about which option (s) to choose. That is, physicians should do more than offer a “menu” of choices—they should recommend what they believe is the best option for the patient under the circumstances and give any reasons, based on medical, experimental, or moral factors, for such judgments. Patients/families should be reminded that they may accept or reject the physician’s recommendations.
- When more that one specialist is involved in the patient’s care, a concerted effort should be made to collaborate in the treatment plan and to arrive at a consensus before approaching the patient/family/decision maker with options for treatment. Interventions provided by a specialist should not be offered or discussed until that specialist has been consulted.
- The physician should elicit questions; provide truthful and complete answers to such questions; attempt to ascertain whether or not the decision maker understands the information and advice provided; and attempt to enhance understanding as needed.
- The understanding of options by patients, parents, or other decision makers will often increase over time. Therefore, decision making should be treated as a process, rather than as an event. This implies, in part, that patients and/or their surrogates may change their minds as they develop an appreciation of the ethical situation and its meaning for their lives.
Withholding of Information From Patients, Parents, or Other Decision Makers
- There is a strong presumption that all information needed to make an appropriate decision about health care (including a decision to forego LSMT) should be provided to the patient, parents, or surrogates. Experience and study suggest that most decision makers want to hear the reality of their situation.
- Open and honest communication reduces tension in the physician-patient relationship. Information may not be withheld on the grounds that it might cause the patient or surrogate to decline a recommended treatment or to choose a treatment that the physician does not wish to provide. Nor may information be withheld because its disclosure might upset the patient, parents, or other decision maker.
- Physicians may withhold information only when a competent patient clearly indicates that he or she does not wish to have the information provided, or if the information would pose an immediate and/or serious threat to the patient’s or surrogate’s health or life. A physician who withholds information assumes the burden of supporting the decision not to make customary disclosures.
Collaborative Decision Making
- When the attending physician believes the treatment no longer confers a benefit and should be foregone, a collaborative approach which includes the patient, parents or other surrogate should be pursued to foster trust and open communication at a difficult time. Children often sense the severity of their condition, and they should be involved appropriately in decisions that affect their continued survival.
Resolution of Disputes
- Patients or surrogates may not compel a physician to provide any treatment that, in the professional judgment of that physician, is unlikely to benefit the patient. If the patient or surrogate makes a decision that the physician cannot accept in good conscience, the physician should arrange transfer of the patient’s care to another physician or hospital willing to accept the decision. If this cannot be accomplished, continued careful consideration of the ethical, legal and administrative implications of the case should take place. Appeal to a judicial review is indicated only if all other efforts fail to resolve the dispute.
- Professionals who care for children should strongly encourage their patients to discuss LSMT with their families and with other close friends and advisers well in advance of the need for decisions. However, when requested to do so, medical professionals should respect the privacy and confidentiality of patients legally entitled to make their own decisions (emancipated minors), including decisions about LSMT. Physicians should honor the desire of patients and parents to prevent disclosure of medically related information to members of the extended family in all but the most unusual circumstances.
- The attending physician, any member of the health care team, patient, parent, or surrogate may seek an ethics consultation at any time. Motives for consultation might include family-staff conflict, conflict between family members, or unclear moral status of any decision. The goals of such consultation might include correcting misunderstandings, helping in the acquisition of understanding, allowing ventilation of emotions, or otherwise helping in resolution of disputes. The availability of ethics consultation must be made known to all patients and families being cared for at Children's Hospital Colorado.
Decision Making for Patients Who Lack Decision Making Capacity
- As defined above some minors may be considered emancipated by Colorado law. If a question arises regarding the legal status of a minor patient, consultation should be requested from the legal affairs office.
- In the case of conscious and alert emancipated minors, the ethical and legal presumption of capacity should govern. Conditions which may call a patient’s capacity into question include delirium, dementia, depression, mental retardation, psychosis, intoxication, stupor or coma. Refusal of specific treatment that most patients would agree to does not alone mean the patient lacks decision making capacity, but such refusals may serve as a basis for inquiring into the patient’s decision making capacity. Impaired decision making capacity may be transient as the patient’s condition changes and this capacity should be reassessed accordingly.
- A surrogate must make health care decisions for patients who lack decision making capacity. In most cases the surrogate will be the parent or legal guardian. When inferences can be made about a previously competent patient’s wishes, these should guide decision making. When patients have never achieved decision making capacity, including infants and young children, the best interests standard is used. This standard does not easily apply to patients in whom a permanently unconscious state has been reliably diagnosed. It is difficult to claim that their continued life benefits them, although we cannot say with certainty that they suffer any burden. Physicians and families should consider whether continued treatment conforms with respect for the dignity of human life and accords with the interests of others, such as family members and other loved ones.
Documentation of Decisions and Entry of Orders
- Progress Notes: At the time an order limiting LSMT is written, the attending physician must write a companion entry in the progress notes including the following information: diagnosis, prognosis, patient’s or other decision maker’s wishes, the content of discussion with involved parties, any disagreements or unresolved issues, and the recommendations of the treating team and consultants.
- Orders: When it has been determined that a particular LSMT is to be foregone, the attending physician or a designee with order writing privileges must write an order in the patient’s medical record. The attending physician has the responsibility to elicit and consider the views of other members of the professional staff regarding treatment limitations before entering the order limiting LSMT. He or she should discuss the meaning of the order limiting treatment with the staff and ensure that all involved understand such orders and their implications.
- Acceptable Orders: Each situation is unique, requiring detailed orders appropriate to the specific case. It is best to avoid abbreviations such as DNAR or generalizations such as “no heroics." Reminders to provide comfort measures such as nursing care, analgesia and pain control are recommended. Refer to Children's Hospital Colorado policy on Do Not Resuscitate Orders for more specific information on this topic.
Adapted from the American Academy of Pediatrics Policy Statement “Guidelines on Forgoing Life-Sustaining Medical Treatment, Pediatrics, Vol. 93, #3, March 1994, P 532-536