Parents Refuse Treatment for Their Children by Leila Volinsky

JONA’S Healthcare Law, Ethics, and Regulation / Volume 8, Number 1 / B 2006, Lippincott Williams & Wilkins, Inc.

When Parents Refuse Treatment for Their Child Alexander A. Kon, MD, CM, FAAP

ver the past 3 de-

ing decisions for their own care

tions? Who should decide when

cades, there has been

and parents making decisions

a child’s life is no longer worth

a major shift in health-

for the care of their children,

living?

care decision making. In the

problems arise when parents

teams and parents work to-

past, physicians had dictated

make choices that seem, at least

gether to choose the best course

treatment and goals of care.

to the healthcare team, to run

of treatment for a child? How

Now, healthcare providers and

counter to their child’s best

can we recognize when mem-

patients are viewed as team-

interest.

bers of the healthcare team

How

can

healthcare

mates, sharing the burdens of

The purpose of this article is

themselves have unreasonable

decision making.1,2 This shift

to examine why such conflicts

expectations? This essay will

from paternalism to autonomy

arise, and to discuss possible

analyze pertinent ethical consid-

has been well-embraced by

solutions to perceived prob-

erations when such conflicts

most members of the healthcare

lems. In my work as a pediatric

arise. At the end of each section,

community. In the care of chil-

intensivist and a bioethicist, I

there is a brief case presented to

dren, however, rather than a

have been asked to consult on

illustrate some of the relevant

shift from physician paternal-

many cases when a healthcare

ethical considerations. Although

ism to patient autonomy, there

team is frustrated because the

has been a shift from physician

parents of a sick child refuse to

paternalism to parental pater-

give permission for treatment.

nalism (or parentalism). Because

What ought one do when the

there are significant ethical dif-

parents of a critically ill child

ferences between patients mak-

refuse life-prolonging interven-

.. .. .. .. .. .. .. .. .. .. .

Alexander A. Kon, MD, CM, FAAP, is Assistant Professor of Pediatrics and Bioethics, Program in Bioethics and the Department of Pediatrics, University of California, Davis. Corresponding author: Alexander A. Kon, MD, CM, FAAP, University of California, Davis, 2516 Stockton Boulevard, Sacramento, CA 95817 (e-mail: aakon@ucdavis.edu).

JONA’S Healthcare Law, Ethics, and Regulation / Volume 8, Number 1 / January–March 2006

Copyr ight © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

the cases presented heavily focus on the Pediatric Intensive Care Unit (PICU), the principles hold regardless of the child’s age, medical condition, and patient location.

............................................................................

Parental Autonomy There is a longstanding assumption that parents act in the best interest of their children. As such, current standards require that healthcare providers obtain the informed permission of a child’s parent, and the assent of the child when appropriate, prior to medical interventions.3 This model generally serves to protect minors, while allowing families to care for their children in ways consistent with their cultural, religious, and personal beliefs. There is ongoing controversy, however, regarding what standard to use when deciding goals of treatment in pediatric practice. Historically, we have turned to a ‘‘best interest’’ standard, however, it may be difficult to determine what is in a child’s best interest, particularly when making value-laden choices (eg, what makes a life worth living). Despite the problems with the best interest standard, it is this standard that is typically used by courts when asked to adjudicate cases. In rare cases, courts have ruled that it is appropriate to remove the parents from the role of surrogate decision-maker. Under the principle of parens patriae (Latin for ‘‘parent of his country’’ used when the government acts on behalf of a child or mentally ill person4), courts may overrule parental decisions when parents are acting neglectfully or abusively. In keeping with the Child Abuse Prevention and Treatment Act,5 courts have consistently ruled that the interests of the state to safeguard the interests of minors outweighs the rights of the parents to make decisions for their children.6 Further, there is judicial precedent for overruling parental decisions when parental beliefs are inconsistent with socially accepted norms. For example, when a Jehovah’s Witness child presents to an emergency department with life-threatening bleeding, courts routinely rule that healthcare providers can, and indeed should, transfuse blood products even over the objection of the parents. One US Supreme Court case that is frequently cited is Prince v. Massachusetts.7 In this case (which was unrelated to the delivery of healthcare), the Jehovah’s Witness custodians of a 9-year-old girl encouraged the child to sell religious material in public, which was in violation of state labor laws. The custodians argued that such a law violated their freedom of religion. In writing the majority opinion, Justice Rutledge wrote: ‘‘Parents may be free to become martyrs themselves. But it does not follow they are free, in identical circumstances, to make martyrs of their children before they have reached the age of full and legal discretion when they can make that choice for themselves.’’ Gaylin and Macklin, in 1982, found that 3 conditions must be met in order to override parental autonomy: (1) The medical profession must be in

agreement about the appropriate treatment; (2) The expected outcome of treatment is a relatively normal life with reasonably good quality; and (3) The child would die without treatment.8 Case example: When Amita* was 22 weeks pregnant, she and her husband learned that their son would be born with an abnormal heart. The fetal ultrasounds showed that the right ventricle, one of the major pumping chambers of the heart, had failed to develop. The couple did not want a ‘‘weak’’ son, and decided that they would not agree to surgery after birth. Once born, the couple, particularly the father, stated that such a child was not worth saving as he would never become a ‘‘real man.’’ With surgery, the child would likely live a long life. Although he would need 2 or 3 surgical procedures during his first 5 years, the remainder of his life might be quite normal. Without surgery, the child would have chronic low-oxygen levels. He would likely live 4 to 8 years, have poor growth, and be quite debilitated. Without surgery, he would surely die before adolescence, and he would likely suffer greatly for months to years during the dying process. The case was brought to the hospital ethics committee, and committee members held a large meeting to include all involved parties. After much discussion, the committee agreed with the cardiologists that nonsurgery was clearly not in the infant’s best interest. The committee recommended further discussions and consideration of medical foster care or adoption if the parents felt that they could not care for their son through surgery. Upon further discussion with the family, the parents agreed to the operation.

............................................................................

Why Parents Refuse Treatment In my experience, the most frequent reason for parental refusal of treatment stems from a lack of understanding. When individuals have inadequate information, the key to consensus is always education. Unfortunately, when I have consulted on cases and given this advice, most healthcare providers think I mean that they should educate the parents. In fact, this is not the case. First, caregivers must educate themselves. Generally, when parents refuse care, they have a reason for doing so based on their own past experiences. Through active listening, healthcare team members can learn why parents refuse interventions that we believe are in a child’s best interest. At times, we may be able to alleviate parental fears, and parents may feel comfortable with the recommended approach after such discussions. There are times, however, when parental concerns cannot be assuaged, and we must find other approaches to provide optimal care while respecting

.......................................................................... *All names have been changed to protect confidentiality.

JONA’S Healthcare Law, Ethics, and Regulation / Volume 8, Number 1 / January–March 2006

parental preferences and concerns. We must always remember that parents are critical members of their child’s care team, and as such, we must be flexible and innovative enough to develop treatment plans that are acceptable to everyone involved. Clearly, some parents refuse care for other reasons, and resolution cannot occur merely through improved communication. When parents object to medical intervention based on religious, cultural, or personal beliefs, there may be no common ground on which the team and the parents can agree. Further, if parents forbid care based on their own best interests rather than on the interests of the child (eg, a parent who has sexually abused a child may forbid a rape-kit examination), mere dialogue may not lead to a resolution that the healthcare team believes is reasonable. When this occurs, practitioners may require outside assistance. Case example: Peter was a 16-year-old who sustained a fracture of his femur in an automobile accident. Peter was in considerable pain, and the team wished to start a morphine patient-controlled-analgesic infusion (PCA). Peter’s father adamantly refused the use of opiate analgesics. The team was highly upset because the child was clearly suffering tremendous pain. What the team failed to understand was that this father had recently lost his own mother to cancer, and the initiation of morphine therapy, in his mind, heralded the end of her life. Without addressing this key concern, it was impossible to convince the father that morphine therapy was in his son’s best interest. Indeed, once this information was obtained, the team was able to alleviate the father’s fears and he gave permission for the analgesics. In the end, both the father and the son were well served by the healthcare team.

must be vigilant and examine their own sentiments and beliefs when conflicts arise with parents. When healthcare providers and parents have divergent expectations of the outcome of treatment, it is doubtful that they will agree on appropriate interventions. In such circumstances, an ethics consultation can be crucial to a positive outcome in providing a neutral arbitrator who can assist in finding common ground. By exploring both parental and team expectations regarding realistic outcomes, consultants can help both parties agree on realistic goals of care. Healthcare team members need to remain open to examining the emotional content of their own positions and consider revising their hopes and perspectives. Case example: Jill was a 7-year-old girl undergoing chemotherapy whose cancer was in remission. She was admitted to the PICU with severe sinusitis and respiratory failure requiring endotracheal intubation and mechanical ventilation. Cultures revealed mucormycosis, and despite maximal therapy, the mold spread throughout her sinuses and onto her face. The healthcare team researched experimental therapies, and recommended a facial transplant in the hopes that this might provide some small chance of recovery. When this recommendation was presented to the parents, they declined. Some members of the team were quite distraught and wished to obtain a court order to perform this radical surgical intervention. With the help of the ethics consultants, these healthcare providers came to realize that they had become so tunnel visioned that they had lost sight of the burdens of their interventions. In the end, the healthcare team agreed that facial transplantation was not appropriate.

............................................................................ ............................................................................

When Healthcare Providers Have Unreasonable Expectations Healthcare providers often feel heavily invested in the children for whom they care. Many view death as failure and are so focused on cure that they may lose sight of the quality of a patient’s life. In fact, care providers’ attention may be so concentrated on effecting a cure that they fail to realize when life-prolonging measures become futile or over burdensome. When parents and healthcare providers disagree about appropriate levels of care, healthcare professionals generally assume that the healthcare team is right and the parents are wrong. Frequently, however, this is not the case. Frequently, a child’s family comes to accept the inevitability of death before the physicians and nurses. It may be difficult for healthcare providers to realize that sometimes it is they, not the parents, who must reassess their perspectives. As such, team members

What Makes a Life Worth Living? People place differing value on life itself, and this is often a source of conflict. For many families, being alive at all costs is the ultimate goal for their children. For other families, if a child who survives an illness will have a quality of life below a level that the family feels is minimally acceptable, life-prolonging measures may be viewed as inappropriate and overly burdensome. When one asks what makes a life worth living, the answer depends on personal, social, religious, and other factors that are not universal. Deciding when the outcome of care will be a fate worse than death is a particularly personal matter. There is no right or wrong answer. When parents are acting in what they view as the best interest of the child, they are acting in accordance with accepted standards. When healthcare providers feel that parents are making decisions based on neglect or abuse of the child, it is

JONA’S Healthcare Law, Ethics, and Regulation / Volume 8, Number 1 / January–March 2006

appropriate to seek a guardian ad litem (ie, a courtappointed impartial third party who can provide an independent assessment of the best interests of the child). Such occurrences are rare. There may be times, however, when parents are physically and emotionally exhausted from the requirements of caring for an ill child. Parent may be unable or unwilling to continue providing continuous care for their child at home. When this is the case, the healthcare team may seek alternatives to assist families including respite care, medical foster care, or skilled nursing facilities. Seeking judicial review is appropriate when providers believe that parents are acting out of neglect or abuse, not when they simply disagree with the parents’ decisions and value judgments. Case example: Melissa was 2 years old when she was in a car accident. She was stabilized and admitted to the PICU. Her workup revealed that she had suffered severe spinal cord damage at C-2 that was not reversible. As such, Melissa would always be quadriplegic, and she would require a tracheostomy and a ventilator to breathe. The parents were given the choice of continuing life-prolonging care or providing comfort measures only. The parents considered this choice, and decided that living with quadriplegia and ventilator dependency was not a life that, in their view, was worth living. Many members of the healthcare team were uneasy with this decision because Melissa’s brain was uninjured. Several team members stated that if it were their child, they would opt for life-prolonging care. All agreed, however, that the parents had made their choice based on their assessment of their child’s best interest, and so their decision was respected.

............................................................................

Steps the Healthcare Team Can Take First, as noted above, communication is the key. The vast majority of disagreements over appropriate care can be resolved merely through discussions. However, it should be noted that this is not always a simple feat. Parents may fear doctors, nurses, social workers, and hospitals, making it difficult for members of the healthcare team to have open dialogues with parents. Further, if an ‘‘us versus them’’ dynamic has developed, such adversarial conditions may require tremendous effort to overcome. Frequently, when the healthcare team and the parents are at an impasse, others with expertise in communication or family counseling can be invaluable. Asking a social worker, psychologist, marriage and family counselor, or chaplain for assistance can provide a more neutral environment where team members and family members can openly discuss issues. In the healthcare setting, the team has a significant home court advantage, and many parents feel impotent and angry

when control over their child is taken from them. Providing an atmosphere where parents and healthcare professionals can converse on a more equal level may allow parents to feel more comfortable. This allows the team members to better understand the parents’ concerns, and increases the potential for a mutually agreeable resolution. When communication itself fails, there are other avenues to pursue. Nearly 80% of the ethics consultations I am asked to perform revolve around inadequate communication. Members of hospital ethics committees generally have expertise in assisting in conversations and are able to provide a less threatening environment for parents. Frequently, parents welcome such a consultation, as it allows them to discuss their child’s care with, in their opinion, a more impartial person. At times, however, all attempts at educating the healthcare team, supporting the family, and communicating with the parents leave treatment issues unresolved. When this occurs, the next step is generally to contact the hospital’s risk management department. Such a step is wise because it often heralds the involvement of judicial review. When parents and care providers simply are unable to agree on appropriate medical interventions, the only recourse is a court. Judges are ‘‘on call’’ for such circumstances, and generally one is available at all times to rule on cases. Although it should be noted that such measures are indeed a last resort, there are times when judicial review is necessary. When there is an immediate threat to life, practitioners may provide care without judicial review. This is a highly unusual circumstance, however, and courts have clearly stated that such measures should not be taken lightly. The concept of ‘‘immediate threat to life’’ is vague, however, a good rule of thumb is that if one can take the time to obtain judicial review prior to providing care over parental objections, one certainly should. Providing immediate care without court approval is necessary at times and has been supported by court decisions, however, such measures do open both the practitioner and the facility to possible legal action.

............................................................................

Implications for the Nurse Manager Nurse managers can play a key role in assisting hospital staff when conflicts arise. Because staff members may become frustrated, or even frankly angry, when they believe parents are not acting in the best interests of the child, the manager can assist in creating a more nonjudgmental and calm atmosphere. The nurse manager can help staff members articulate their feelings regarding what is in the best interest of the child and family. The manager can help foster an environment where the professional nurses feel listened to and where their opinions are respected as active members of the

JONA’S Healthcare Law, Ethics, and Regulation / Volume 8, Number 1 / January–March 2006

healthcare team. The manager can further promote an atmosphere where families feel free to assert themselves without feeling they are being judged and where bedside nurses are encouraged to support the patient and family regardless of their decisions. When tensions are running high, the manager may remind the staff of Virginia Henderson’s 1939 definition of nursing: ‘‘Nursing is primarily helping people (sick or well) in the performance of those activities contributing to health, or its recovery (or to a peaceful death) that they would perform unaided if they had the necessary strength, will, or knowledge.’’9 Perhaps the single most effective assistance a manager can provide is access to resources. When conflicts arise, staff members may be unaware that there are other support systems at their disposal (eg, hospital ethics committees, clinical nurse leaders, psychologists, social workers), and the manager can often facilitate the early inclusion of such individuals. Further, when cultural diversity contributes to misunderstandings, the manager may solicit the assistance of a culture broker as a way to resolve differences.10 Further, the manager may have a clearer understanding of the role of risk management, may guide the team in consultation with this service, and may act as the liaison between the team and the risk management office. Also, if judicial review is required, often the manager and the social worker will work together to obtain such review. If nurse managers are uncertain how to arrange such review, the facility’s risk managers can serve as guides. Nurse managers should take a proactive approach to such problems. In settings where such instances are not uncommon (eg, neonatal and pediatric intensive care units, emergency departments, oncology wards), staff should receive training in recognizing, handling, and minimizing such conflict between providers and families. Continuing education programs should be offered with a focus on avoiding conflicts and resolving disputes, and managers may turn to ethics committee members, social workers, psychologists, or chaplains to assist in staff education. Educational efforts may also include bedside mentoring by more experienced team members when conflicts arise. Further, after a large conflict is resolved, staff may benefit from a meeting with a crisis team to help cope with their stress and to help team members learn from their experiences.

............................................................................

Summary The key to resolving conflicts over care is communication. It is imperative, however, that healthcare providers enter any such conversations with an open mind and a willingness to listen first and talk later. Listening to parents is essential in order to understand their concerns and build trust. Team members should also be cognizant that at times it is they, not the parents, who are making uninformed or irrational choices. The vast majority of such conflicts can be resolved through open

discussions, which may be facilitated by non–team members (eg, an ethics consultant or psychologist). When all attempts at communication fail to achieve consensus, practitioners must seek judicial review. Courts have ruled that when there is a clear and imminent threat to life, and a delay in treatment is likely to lead to the death of a child, it may be appropriate for healthcare professionals to overrule parents without judicial review (eg, in the case of a blood transfusion for a Jehovah’s Witness child with life-threatening bleeding after a motor vehicle accident). When irreconcilable differences of opinion arise and there is time to obtain judicial review, however, practitioners should turn to the courts for guidance and authority. In the end, however, the court should be viewed as a last resort. It has been my experience that once a court becomes involved, all parties are dissatisfied in the end.

............................................................................

Acknowledgments The author thanks Dr Anita Catlin, DNSc, and Mr Joseph Dunn, RN, MSN/MPA, CCRN, for their insights and assistance. This work was supported by a grant from the Greenwall Foundation Faculty Scholars Program in Bioethics. REFERENCES 1. Carlet J, Thijs LG, Antonelli M, et al. Challenges in endof-life care in the ICU. Statement of the 5th International Consensus Conference in Critical Care: Brussels, Belgium, April 2003. Intensive Care Med. May 2004;30(5):770-784. 2. Thompson BT, Cox PN, Antonelli M, et al. Challenges in end-of-life care in the ICU: statement of the 5th International Consensus Conference in Critical Care: Brussels, Belgium, April 2003: executive summary. Crit Care Med. August 2004;32(8):1781-1784. 3. Committee on Bioethics, American Academy of Pediatrics. Informed consent, parental permission, and assent in pediatric practice. Pediatrics. February 1995;95(2):314-317. 4. The ’Lectric Law Library’s Lexicon. Available at: http:// www.lectlaw.com/def2/p004.htm. Accessed May 13, 2005. 5. United States Code of Federal Regulations. Title 42—The Public Health and Welfare, Chapter 67—Child Abuse Prevention and Treatment and Adoption Reform. Last amended 2003. Available at: http://www4.law.cornell.edu/uscode/html/ uscode42/usc_sup_01_42_10_67.html. Accessed May 13, 2005. 6. Holder AR. Parents, courts, and refusal of treatment. J Pediatr. October 1983;103(4):515 -521. 7. United States Supreme Court. Prince v. Commonwealth of Massachusetts. 321. Vol. 158; 1944. Available at: http://caselaw. lp.findlaw.com/cgi-bin/getcase.pl?court=us&vol=321&invol=158. Accessed May 13, 2005. 8. Gaylin W, Macklin R, eds. Who Speaks for the Child? The Problems of Proxy Consent (The Hastings Center Series in Ethics). New York, NY: Springer; 1982. 9. Harmer B, Henderson V. Textbook of the Principles and Practice of Nursing. New York, NY: Macmillan; 1939 10. Jezewski MA. Acting as a culture broker for culturally diverse staff. Aspen’s Advis Nurse Exec. Jul 1993;8(10):6-8.

JONA’S Healthcare Law, Ethics, and Regulation / Volume 8, Number 1 / January–March 2006