Chapter 127. Law, Ethics, and Caring Near the End of Life

According to the Institute of Medicine report When Children Die: Improving Palliative and End of Life Care for Children and their Families,1in 1999 approximately 55,000 children from birth through age 19 died in the United States. Some of these children and adolescents died as the result of an accident and had been completely healthy until death. Some infants and children died of diseases, but their deaths were unexpected because recovery had been considered a probability. Others died as the inevitable conclusion of their illness; recovery was considered at least unlikely and, in many cases, impossible. In all these situations, however, the death (or near-death, when the child eventually recovers) of a child is a horrendous event for the family members left behind. It is a life-altering tragedy, one whose stages family members will never forget, nor will they forget who said what to them before, during, and after the death. A careless remark by a health professional may be taken as dismissive of parental anguish and thus remembered in anger for a lifetime.

Although there seems to be agreement that students and residents are taught the medical techniques and procedures to care for dying children, there is far less agreement that they are equipped to talk to parents and patients about bad news, or to understand the psychosocial ramifications of a child’s critical illness or death for the family when they enter practice. Residents are also thought in many cases to be inadequately trained to to talk to and help the patient understand what is happening.2,3 This chapter will, it is hoped, add to such understanding.

End-of-life care focuses on preparing for an anticipated death, such as discussing “Do Not Resuscitate” orders and writing them, managing the medical aspects of the death, and relieving immediate symptoms. Palliative care seeks to prevent or relieve distress, both physical and psychic, for patients and families, and to enhance the quality of life in the face of an ultimately terminal condition. According to the American Academy of Pediatrics’ Committee on Bioethics, palliative treatments “focus on the relief of symptoms (eg, pain) and conditions (eg, loneliness) that cause distress and detract from the child’s enjoyment of life. It also seeks to ensure that bereaved families are able to remain functional and intact.”4

According to Friedman et al:

The American Academy of Pediatrics has also established a definition of palliative care, with special attention paid to pediatric patients. Pediatric palliative care seeks to enhance the quality of life in the face of an ultimately terminal condition. The treatments focus on the relief of symptoms and conditions that cause distress and distract from the child’s enjoyment of life. Such care includes the control of pain and other symptoms and addresses the psychological, social, or spiritual needs of children living with life-threatening or terminal conditions. The goal of palliative care is achievement of the best quality of life for patients and their families, consistent with their values and regardless of the location of the patient.5

Unlike the treatment of adult patients, for which insurance payments will not be made for palliative care if curative therapies are still being administered, in many situations children receive curative therapies (such as chemotherapies) at the same time that palliative care is made available.

In an area as emotionally charged as this one, conflicts arise that require understanding of the legal principles as well as the ethical norms that are involved.

On occasion, parents and physicians cannot agree on the basic definition of a child’s illness. The physician believes that continued intensive interventions are not only unlikely to save a dying child’s life, but are themselves causing discomfort, but the parents insist that every measure available be implemented to try and save their child. At the other extreme, physicians believe that intensive therapy will save a child’s life or produce substantial remission, but the parents, for religious or other reasons, refuse.

The concept of futility may mean very different things to a parent and to a physician. To the physician it may mean that further treatment will not improve the outcome of the fatal illness and that maintaining the status quo only delays death. To the parent of the desperately ill child, the fact that the child is not dead means that the treatment is not futile. It can be difficult, sometimes, for health care providers who deal with desperately ill children every day to appreciate a family’s view that no matter what their child’s condition, even if that child is in a coma, they still have a living child they can hold, talk to, and see. While they would, of course, prefer that their child be healthy again, being comatose is better than being dead, buried, or cremated, and no longer within parental reach. There is virtually no therapy these parents would find futile.

Some states have attempted to resolve these issues by enacting statutes permitting physicians whose diagnosis of “medical futility” has been reviewed by a hospital’s ethics committee or other physicians to inform the family that it is their responsibility to find an alternative placement for the patient. If the family does not, then on a given day (usually 10 days to a few weeks) life support will be turned off. The unfortunate publicity some physicians and hospitals have received in cases involving withdrawal of life support from indigent patients (particularly when the patient is a small child) has led to some ethicists urging reassessment of the situation.6,7

Many other factors may also lead parents to refuse to consent to a “Do Not Resuscitate” order or to withdrawal of life-sustaining support. In each case, taking the time and trouble to find out what the parents think, correcting misapprehensions and building trust in the process, may lead to final agreement. For example, some parents might think the hospital and physician are acting out of a sense of superiority: “They don’t want to take care of my child because we are poor” or “A minority child is just too much trouble for them to want to bother with.” These feelings may be grounded on historical fact, for example the medical experiments conducted at Tuskeegee. Dealing with these parental fears openly and honestly may resolve the dispute and lead to the building of a solid, trusting relationship for both pediatrician and parents.

In some situations, however, negotiation is futile. If a child is likely to die as the result of child abuse, the abusing parent(s) will never consent to any action that will result in the child’s demise such as termination of life support or nonresuscitation. However badly beaten a child in a coma may have been, the parent cannot be prosecuted for murder as long as the child is alive. If the child is brain dead, no parental permission is required to declare the child dead, sign the death certificate, and disconnect life support. If the child is not brain dead, this may be one of the few situations in end-of-life care for children where a court order allowing removal of life support is required. If life support is removed in the absence of such an order, then when the parent is tried for murder he will argue that he didn’t kill the child, the physician did.

At the other end of the spectrum, physicians believe that an ill child can be saved from death or serious disability but the parents refuse. They object to a blood transfusion because they are Jehovah’s Witnesses or they object to chemotherapy on the grounds that it is poison.8 This situation involves a variety of factors, but the most important is the predicted outcome. If a child has been hit by a car, requires a blood transfusion, and has every expectation of a full recovery, but the parents continue to refuse, a court order is necessary to take care of the child. On the other hand, consider the child who has a terminal illness and maximum medical care will prolong his or her life for a limited time, but the parents want to take the child home and let him or her be at peace. If the physicians go to court, they will probably get an order to treat the child, but the harm done to the family unit may be far greater than the limited success.

In almost all situations, a judge confronted with a physician asking for a court order to keep a child alive will issue that order. She must defer to the physician’s medical knowledge and assessment and she knows that if she says no, a child will die, perhaps unnecessarily. Thus the real ethical issue for the physicians caring for these patients is to ask themselves, their colleagues, and their ethics committees whether requesting a court order in the first place is in the child’s best interests or does it unnecessarily create a contentious milieu.

If a child is in a hospital after an accident and needs blood for surgery, but her parents refuse to consent, a court order is easily obtained. Almost always she is transfused, surgery is successful, and she goes home fully recovered. Although there may be underlying psychosocial issues within the family and between the family and the religious community, the child has recovered and is well. On the other hand, if a child with a malignancy needs chemotherapy, the parents refuse, and a court order is obtained, the parents may take the child to the airport to leave the state or the country instead of to the hospital for the treatment. If physicians envision long-term therapies to which parents object, they must also envision asking a court to place the child in foster care to be sure the medical care is given. Does the situation justify this rupture of the family when a sick child is separated from his parents and the parents are separated from their child? If that question arises in the context of inevitable death postponed for a period by medical intervention, is it fair or decent to deprive the patient and family of their time together? These questions, more than the legal issues, should determine the decision to be made about asking a court to intervene.

If the parents disagree about the appropriate course of treatment and the issues cannot be resolved by discussion so one of them requests a court order, courts invariably side with the parent who wants more (rather than less) treatment.

Parents, of course, make treatment decisions for their children, including their adolescent children, but no one expects a small child to be asked for his or her opinion on medical care. If a 4 year old emphatically objects to medical treatment, he is comforted and reassured and treatment proceeds. As children become adolescents, however, their right to consent to and to refuse treatment increases and most courts now recognize the adolescent’s right to refuse treatment in a non-life-threatening illness.9,10 Fewer allow a minor to refuse life-saving treatment, although some do. In no state is a minor able to sign a durable power of attorney or a living will.

All states allow minors to consent to treatment for sexually transmitted diseases (STDs), alcohol, and drug problems without parental knowledge. There was ample evidence that if parental involvement was required, teenagers would forgo treatment. About half the states have consent statutes stating that at a specified age (14–16) a minor can consent to any medical care without parental involvement, although after Roe v. Wade many state legislatures exempted abortions from their minor consent statutes. In almost all of the states without consent statutes, courts have recognized the “mature minor” doctrine—if a minor understands the offered treatment or procedure as well as an adult can and, in particular, understands the risks and potential benefits, his or her consent to treatment is valid. Most cases involving the mature minor rule have involved outpatient treatments, because parents’ insurance (and therefore their involvement) is required for almost all hospitalizations.

Minors (including children as young as age 5 or 6 in some situations) have the right to refuse to participate in research, but if there is prospect of direct benefit to the child and no alternative therapy is likely to be as effective, a parent may override the child’s refusal and enroll the child in the study.

Until the past decade, courts held that minors might be able to refuse some medical care, but they could not refuse life-saving treatment, in other words, that a minor had no “right to die.”11 More recently, however, courts have held in a few states that if the minor clearly understands the consequences of refusing treatment, he or she may do so even if that consequence is death.12 This is, however, still a minority position among state courts.

Whether or not an adolescent patient who is dying has the right to refuse existing treatment or to refuse to accept new treatments as a matter of law, her physicians have an ethical duty to take her feelings seriously and make treatment plans with them in mind. Where the dispute about continuing life-sustaining (but not curative) care is between the patient and his or her parents, the physician’s duty is to advocate for the patient if the patient’s decision is one arrived at with real understanding of the situation and its consequences.13-16

If, instead of accepting some treatment options and rejecting others, the patient (with or without parental approval and assistance) wants to have nothing more to do with the conventional health care system and intends to turn to herbal medicine or some other alternative, it is probable that the physicians could get a court order to treat him or her. For example, a 5 year old can be put in foster care to keep her parents from absconding with her. But if the patient is an adolescent, the only sure method of guaranteeing the availability of the patient after the court order is granted is to have him or her arrested and kept in custody—either in the hospital under guard or in a jail. Giving a 16 year old with a terminal illness chemotherapy and then sending her back to a jail cell is probably not an acceptable solution.

Some children who are terminally ill are able to go to school. Under the federal Individuals with Disabilities Education Act of 1997 (http://www.ed.gov/policy/speced/leg/idea/idea.pdf), if the child will benefit, the public school must admit him or her. Such children are also entitled to “related services designed to meet their unique needs” from the public school. If they, their parents, and their physicians have agreed that cardiopulmonary resuscitation is inappropriate for them as they may be dying, their parents may ask that if they become ill at school, no one attempt resuscitation. The American Academy of Pediatrics has a policy statement on this point. It urges its members who have patients in this situation to become involved in the school process along with the child’s parents and deal with the school personnel—teachers, the principal, and the school nursing staff, the board of education, and the board’s lawyers—to make sure they understand the particular medical problem, and the reasons why the “Do Not Resuscitate” order was written. In particular, it should be made quite explicit to all of those involved from the school exactly what actions should be taken if the child becomes ill.17

Most of the literature on this topic assumes that if a child collapses at school, he or she is then taken to the school nurse’s office. That assumption overlooks the fact that in rural school districts there may be no school nurses at all or, in some smaller districts, one or two nurses who have several schools in their charge. There may not be any health professional in the school at the time of the child’s collapse, and so medically untrained teachers may have to make these choices. As a result of those and other concerns about liability, how other children would feel if a child were allowed to die in front of them in the classroom, teachers’ unwillingness to let a child die, the teachers’ view that as nonmedically trained persons their decision-making responsibility should be limited to calling 911, and many other reasons, many school districts have indicated that they will not honor student “Do Not Resuscitate” orders.18

There is another legal issue that may confound a family’s and physician’s plan for a child to die peacefully at home. If it should become necessary to call 911 and ask emergency medical technicians to take the child to the hospital for the last stages of the dying process, in many states it is illegal for EMTs to fail to institute resuscitation procedures.19-21 Even if the state statutes provide for recognition of “Do Not Resuscitate” orders for adult patients who are outside the hospital environment, there may be an explicit statement that this does not apply to a minor patient. For example, the South Carolina statutory Emergency Services Non-Resuscitation Order Act states “No person under the age of eighteen years may request or receive a ‘do not resuscitate order for emergency medical services’ as provided for in this article.”22 In these situations, the family should be told in advance to call their hospice worker or someone other than emergency services and that if they do call 911, the result will be resuscitation whether it is wanted or not. Where it is allowed, however, advance discussion with emergency personnel and presentation of the physician’s order may result in an agreement not to resuscitate the child if they are called to the home.