Ethical principles and parental choice: treatment options for neonates with hypoplastic left heart syndrome. (Pediatric Ethics, Issues, & Commentary).
Nurses caring for these neonates and their families play an important role in explaining and clarifying available treatment options in an effort to achieve a high level of informed consent. Inherent in this role is the ability of the nurse to recognize and, subsequently, utilize ethical principles associated with both informed consent and delivery of care. The purpose of this article is to assist nurses to identify these principles in order to use them in planning care when parents of neonates with HLHS are faced with choosing a treatment option for their child. The discussion will include a brief overview of HLHS and the currently available treatment options, ethical principles associated with informed parental choice (consent) of treatment options, and strategies for using these ethical principles to guide nursing interventions when caring for these children and their families.
HLHS is a developmental cardiac malformation that involves the left ventricle, aorta, and the mitral valve (Lev, 1952; Noonan & Nadas, 1958). It is the fourth most common critical congenital heart defect and occurs in 0.267 per 1,000 live births (Ferencz et al., 1985). Without treatment, 95% of neonates diagnosed with HLHS will die within 1 month, with none surviving beyond 4 months of life (Stuart, Wren, & Staples, 1991). Due to the severity of the defect and the "time-sensitivity" of specific treatment modalities, an option must be chosen and initiated quickly.
The treatment options available for the neonate with HLHS include medical termination of pregnancy (if detected early enough); palliative care, also known as comfort care or compassionate care (Zahka, Spector, & Hanisch, 1993); cardiac transplantation; or three stages of surgical palliation to reconstruct the heart and its supporting vasculature. Medical termination of pregnancy is an option if the diagnosis has been made by fetal ultrasound or echocardiography prior to a gestational age of 6 months. Palliative care, initiated when parents opt not to pursue surgical treatment, results in the baby dying, usually within the first week of life. Cardiac transplantation offers a greater chance of survival if performed in the first month of life, while the first stage of surgical palliation (known as the Norwood procedure) must be performed within the first few days to weeks of life. Table 1 offers resources for each of the options. This article will address the three options the parents face when a live child is born.
Parents generally must choose one of three available treatment options for their child: palliative care (the initiation of pain and symptom management provided with dignity and compassion for the baby and cultural, spiritual, and practical support for the parents [Catlin & Carter, 2002]), cardiac transplantation, or three stages of reconstructive surgery. Each of these choices has advantages and disadvantages that must be considered in the decision-making process. While the options are being considered, the infant may be managed with mechanical ventilation and various medications commonly used to keep the infant alive such as prostaglandin E1. If palliative care is chosen, these treatments will be tapered off and pain and symptom management will be the focus of care. Pearson (1997) described palliative care for the non-viable infant in the hospital setting, recounting the parents' wishes for a supportive team and a pain free death for their infant. Some parents may wish to take their infant home, and this is arranged with support from social services in conjunction with the local hospice team (Catlin & Carter, 2002).
Cardiac transplantation offers the advantage of providing the child with a structurally normal heart. Transplantation has been shown to be most successful when performed in the first month of life (Neglsen-Cannarella & Chang, 1992) with survival rates reported between 82% and 89% (Bailey & Gundry, 1990). Approximately 61% of children are alive at 1 year after transplant and 55% at 5 years (Jenkins et al., 2000). Although the organ recipient gains normal cardiac function if the transplant is successful, the child's physical and social activities may be restricted. Fleisher and colleagues (2002) also found cognitive performance and other developmental benchmarks in children with heart transplants below that of normal children. One of the disadvantages of transplantation is the potential need to transfer the neonate to a transplant center, which often means the family must relocate as well. This move adds to the significant stress and financial constraints already faced by the family. Another disadvantage to transplantation is the life-long need to balance preventing rejection with immunosuppressive therapy against the risk of succumbing to infection. The shortage of donors presents a significant limitation as well. In a recent study comparing 1-year survival rates between patients undergoing transplantation versus the staged surgical reconstruction, 63% of patients in the transplant group died while waiting for a donor heart (Jenkins et al., 2000).
Staged surgical palliation offers benefits but with important limitations as well. More pediatric cardiac centers perform the Norwood procedure versus cardiac transplantation. Moreover, advances in surgical technique have improved survival rates for these children; however, surgical palliation presents several limitations. The first surgical stage, the Norwood procedure, may not be successful, and the hospitalization may be very prolonged while feeding and other medical issues are resolved. Recent data indicates that the majority of deaths occur in hospitalized children after Stage I of reconstruction, but survival increased significantly over the 15-year study period (Mahle, Spray, Wernovsky, Gaynor, & Clark, 2000). In addition, surgical complications may occur at any stage. Ultimately, after all three surgical procedures, the child will be left with single ventricle physiology and, as a result, limitations in physical activity. Studies also indicate that many of these children later exhibit significant neurocognitive and neurodevelopmental impairment (Mahle, Clancy, et al., 2000).
In summary, parents with a neonate with HLHS are faced with treatment choices that offer no "cure" for this serious heart defect. The consequences of each of these options must be weighed by the family in order for them to make the best decision for their individual situation. Unfortunately, often the health care team, so earnest in their desire to help save the child, does not always know or discuss with families the realities of these treatment options as well as the problematic future developmental sequelae The urgency of making a treatment decision may not allow for extended time to discuss these future realities, yet parents must be made aware of them in order to truly make an informed decision.
Ethical Principles Used to Guide Care
According to Flew (1999), the term ethics "suggests a set of standards by which a particular group or community decides to regulate its behavior" (p. 112). Rushton (2001) provides a more specific definition for ethics: "The study of the process for determining the best course of action in the face of conflicting choices" (p. 108). Given that nurses are an integral component of the health care system and participate in continuous interaction with the patient and family, ethics has emerged as a framework for guiding nursing care delivery. Since there are many ethical considerations to be taken into account when choosing a treatment option for the neonate with HLHS, nurses are able to make a valuable contribution to the knowledge base that is necessary for parents to make such a decision.
Although they have the authority and obligation to make a decision that is best for their child, parents with children in critical care units report experiencing numbness as they struggle to decide what is right for the child and what is right for the family (Anderson & Hall, 1995). Health care professionals must bear in mind that such decisions must be value-centered and determined on an individual basis, taking into account an individual's personal, cultural, and religious values (Pierce, 1997). Nurses should remain cognizant of the benefits and burdens of a particular treatment option, along with the knowledge that decision making is more difficult when the outcome is less certain (Rushton, 2001).
The informed consent process has evolved over the years from a stance where health care professionals assumed they knew what was in the best interest of the patient and did not involve patients or families in health care decisions to a stance where it now demands that patients and families be given the needed information and then be allowed to make their own decisions. These decisions should be made voluntarily and free from coercion (Savage, 1997). Although the treating physician has the responsibility to provide a recommendation for care and obtain informed consent, the nurse plays a vital role in assuring that the parents are informed (Ariff & Groh, 1996). The specific role of the nurse in the process of informed consent according to Davis (1989) includes: (a) monitoring and coordinating the informed consent process, (b) being the patient's advocate/liaison to the child's physician, (c) explaining alternative treatments with provision of information regarding these alternatives, and (d) being a negotiator between patients and their families and physicians when there are differences of opinion.
Three ethical principles are involved in the process of parental choice and informed consent in the neonate with HLHS: autonomy, beneficence, and veracity. In order for the nurse to facilitate an informed treatment decision for the neonate's parents, these principles should be incorporated into the overall plan of care. In assisting the parents in this process, the nurse needs to realize that caring for others requires consideration of one's own values and contributions (Mayeroff, 1971), and that interactions with parents can provide data regarding the parental perceptions of their abilities and desires to cope with problematic situations (Bandman & Bandman, 2002).
Autonomy. Autonomy, the right of self-determination, implies that individuals have the right to information on the three available treatment options for their child. On the basis of this information or input, parents, subsequently, have the right to refuse treatment or to consent for one of the two surgical procedures. Beauchamp and Childress (2001b) state that the respect for autonomy is a professional obligation for the health care professional and is a right, not a duty, of patients and their families. In essence, autonomy means making a deliberate choice regarding a specific option.
If the neonate's parents are to act autonomously, the nurse's role should be to assure informedness by: (a) helping parents to understand the uncertainties of the disease and treatments in order to make a decision that is truly in the best interests of the child; (b) allowing parents the time and effort necessary to make a treatment decision, unless the child is in imminent danger of dying; (c) arranging for the availability of other health care team members, such as social services, clergy, and other ancillary services, for ongoing discussions; and (d) remembering that to accept or reject the recommended treatment options is the parent's moral decision and is not the responsibility of the health care profession (Ariff & Groh, 1996).
Beneficence. Beneficence, the active doing of goodness or kindness, requires that the nurse act in ways to promote the patient's (and family's) welfare (Burkhardt & Nathaniel, 1998; Mappes & DeGrazia, 2002). This includes providing information regarding the specific beneficial aspects of a particular treatment modality as well as a risk (harm)/benefit ratio (Beauchamp & Childress, 2001a).
In order for the nurse to act in a beneficent manner, he or she must present the information regarding the treatment options and their associated risks and benefits, while remaining cognizant of his or her obligation to respect the parent's decision. This can be especially difficult if the nurse should disagree with the treatment option chosen by the parents. The nurse, in a strictly advisory capacity, must show respect to the patient and family for their right to make informed health care decisions and should continue an ongoing needs assessment of the family. In order to make a decision that is truly in the child's best interests, Ariff and Groh (1996) encourage nurses to help parents to realize that the course of the disease may be uncertain. Savage (1997) brings up several key points to be used by nurses when interacting with parents: (a) communicate clearly with both the parents and other members of the health care team, (b) inform parents of the decisions that must be made and in what specific time frame, (c) communicate any changes in the child's condition that may potentially effect the treatment plans, (d) initiate referrals to appropriate resources that the family may need, and (e) remain cognizant of the fact that the parents are the ones who must live with their decision every day of their lives from this time forward (Savage, 1997).
Veracity. Veracity, or truth telling, in the health care environment refers to the transfer of information in a comprehensive, accurate, and objective manner, as well as the fostering of the patients' and families' understanding of the information (Beauchamp & Childress, 2001b). Veracity, which is closely tied to autonomy, is based on respect Owed to others, fidelity and promise keeping, and trust (Beauchamp & Childress, 2001b). The cornerstone of the nurse-patient relationship is trust, especially in keeping with the philosophy of family-centered care.
Veracity in nursing care can be a double-edged sword in that being a patient advocate is not without risk and is directly influenced by the culture and norms of the nurse's individual practice environment (Rushton, 2001). Predicting outcomes with any certainty is extremely difficult in children and even more so in newborns. Once the neonate has been admitted to the intensive care unit, some health care professionals believe that there is an obligation to use the available technology just because it is available (i.e., the technological imperative). Care must be taken to avoid exerting excessive influence for a particular treatment option on the parents. One report suggests that surgeons would perform surgery to save the child's life regardless of the potential suffering or long-term complications of a chronic condition on the child and family (Bagwell & Goodwin, 1992).
In today's health care environment, technological advancements have allowed the diagnosis of HLHS to be made prenatally in a number of cases (Brackley et al., 2000). In such cases, parents are able to consider all four treatment options, and if pregnancy continuation is opted, they have a longer period of time to evaluate the remaining three options. A difficulty arises when the diagnosis is made during the newborn period, and parents are required to make a nearly instantaneous decision without really having enough time to consider the risk/benefit ratio of each of the available treatment modalities. Additionally, little time is available for parents to grieve for the loss of a "normal" child. There is no time for coping with their emotions, and according to Swanson (1995), feelings of hope, anticipation, and excitement surrounding the baby's birth are replaced by feelings of guilt, fear, anxiety, and uncertainty.
When attempting to make a timely treatment decision regarding their child, parents may become overwhelmed, angry, guilty, and ambivalent, in addition to suffering from acute moral conflicts. Because the recommendations given to them may be conflicting and the time in which a decision must be made is short and pressured, parents often turn to the nurse for support, advice, and assistance. According to Bandman and Bandman (2002), all of the factors relevant to the neonate's capacities and potential as well as those of the families' ability to cope with the problematic and often painful situation of having a child with special needs require careful consideration in making a final decision regarding a treatment option.
Informed consent requires that decision makers have the capacity to understand the information being presented regarding the treatment options and to give their consent voluntarily, without duress or fraud (Hogue, 1988). The parents may not initially comprehend many of the facts presented until the shock of having a child with a congenital heart defect has subsided. Due to the complexity of this defect and the timing of the diagnosis, health care professionals must remain aware of the power inequity that exists between parents and providers and that sometimes what is perceived as a lack of knowledge may actually be a discrepancy in values between health care team members and parents (Savage, 1997). Because the neonate is incapable of participating in the decision-making process, the nurse must advocate for the child by adequately and succinctly explaining all facets of each of the available treatment options to the parents. Nurses unfamiliar with the various procedures and outcomes for hypoplastic heart are used to seek out more knowledgeable colleagues and review the literature. Nurses must realize that the burden of choice lies with those who have accepted responsibility for making the decision and that as health care professionals, nurses will not see the lived experience of that choice. It is doubtful that nurses will ever know what it means to the family to have their lives changed so dramatically by choosing one option over another (Pierce, 1997).
In general, society expects parents to sacrifice everything for the child, yet parents are left on their own to find resources for their chronically ill child. Additionally, mothers are expected to provide care for the child 24 hours a day but, in many cases, must also maintain full time employment in order to have health insurance to provide for the child's medical care. Bandman and Bandman (2002) recommend that the nurse share knowledge regarding the child's estimated future care needs as well as provide any useful information gleaned from other parents facing similar demands. It is also important for parents to know that children with complex congenital anomalies can still bring happiness to their families and, despite their physical impairments or neurological deficits, still contribute to the family (Harms & Giordano, 1990).
In summary, having a child with HLHS poses extremely difficult choices for parents. Treatment decisions must be made in a timely manner and are not without ethical implications. Nurses can facilitate these decisions using ethical principles to guide nursing care. Although this article focuses on autonomy, beneficence, and veracity, the principles of equality and justice (the fair distribution of society's resources) cannot be overlooked. In the United States, these surgical procedures are presently offered to children. This is not the case in every state and certainly not in many other countries. The provision of information regarding all treatment options in understandable language will help to promote informed decision making for patients and their families.
Table 1. Additional Resources For information on medical termination of pregnancy of a fetus with hypoplastic left heart, these Web sites can be accessed: * PacNoRGG is a federally-funded group of genetic services providers, consumers, public health professionals, and educators working together to improve genetic services for fatallies. The Web site philosophy is to provide genetics information specific to the Northwest and links to national sites. The site (http://mchneighborhood.ichp.edu/pacnorgg/) connects genetic service providers, public health professionals, consumers of genetic services, and the public with local, regional, and national genetic resources and information. * The National Abortion Federation (NAF) (http://www.prochoice.org/) is the professional association of abortion providers in the United States and Canada. NAF members include 400 nonprofit and private clinics, women's health centers, Planned Parenthood facilities, and private physicians, as well as nationally and internationally recognized researchers, clinicians, and educators at major universities and teaching hospitals who together care for more than half of the women in the United States who choose abortion each year. For families choosing palliative care for their infant with hypoplastic left heart, resources include: * Video: You Are Not Alone is a videotape about parents who chose palliative care for their infants with hypoplastic hearts and other potentially fatal conditions. The film was produced by the Colorado Trust, the Colorado for Collective for Medical Decisions, and Nickel's Worth Productions. Created in a joint effort by Dr. Peter Hulac, neonatologist; Deborah Davis, PhD, author of "Loving and Letting Go;" and Father Bill Pounds, hospital chaplain; the film can be used as an educational tool for parents in the NICU. The film can be ordered from Nickeltv@aol.com. * The Neonatal End of Life Palliative Care Protocol has recently been published and can be found in the April 2002 issue of Journal of Perinatology, 22(3), pages 184-195 or June 2002 issue of Neonatal Network, Journal of Neonatal Nursing, 21(4), 37-49. For information on HLHS end approaches to treatment, the following Web sites can be accessed: * Pediatrix Medical Group-Parents Guide--Pediatrix is a medical group that is dedicated to providing quality care to patients and improving care and subsequent outcomes through education, research, and information sharing (http://www.pediatrix.com/parents). * American Heart Association Publication on the Child with Congenital Heart Disease--The mission of the American Heart Association is to reduce disability and death from cardiovascular disease and stroke (http://www.americanheart.org) * HLHS Information Page--The HLHS Information Page was designed by parents of a child with HLHS. Its goal is to help other parents who receive a prenatal diagnosis of HLHS (http://www.hlhsinfo.homestead.com/index.html). Support Groups for parents with Internet access: * Left Heart Matters--a support group for families with children with HLHS (http://www.lhm.org.uk/) For families choosing staged reconstructive surgery beginning with the Norwood procedure for their neonate with HLHS, these Web sites can be accessed: * The University of Michigan Congenital Heart Center strives to provide the best possible care for infants, children, and adults with all forms of congenital and acquired heart disease. This integrated medical, surgical, nursing, and administrative program performs approximately 800 heart operations per year (http://www-umchc.pdc.med.umich.edu/ parents/d-hypoplastic.html) * New York Online Access to Health (NOAH) was established by a group of New York City libraries to provide health care information that is easily accessible and understandable to the layperson (http://www.noahhealth.org/english/illness/ genetic_diseases/chd.html). * The Cardiac Center at the Children's Hospital of Philadelphia is a comprehensive and multidisciplinary center designed to provide services for all forms of heart disease, today and tomorrow. The team consists of physicians from pediatric cardiolology, cardiothoracic surgery, and anethesia/critical care as well as a dedicated division of cardiothoracic nurses. Over 900 cardiac operations are performed annually (http://heart.chop.edu/hrtdisors.html) * Forthcoming Text: Hypoplastic Left Heart Syndrome, edited by H.A. Hennein and E.L. Bove, Futura Publishing. For families choosing cardiac transplantation for their neonate with hypoplastic left heart, these web sites can be accessed: * Pediatric heart transplantation--How to choose a doctor and hospital for your treatment. This guide was developed by the Cleveland Clinic in order to asssit parents in making an informed decision regarding heart transplantation (http://www.clevelandclinic.org/) * The Cardiac Center at the Children's Hospital of Philadelphia is a comprehensive and multidisciplinary center designed to provide services for all forms of heart disease, today and tomorrow. The team consists of physicians from pediatric cardiolology, cardiothoracic surgery, and anethesia/critical care as well as a dedicated division of cardiothoracic nurses. Over 900 cardiac operations are performed annually. (http://heart.chop.edu/hrtdisors.html) * Loma Linda International Heart Institute of Loma Linda University Medical Center is a world leader in infant heart transplantation (http://www.llu.edu/ihi/iheart.html) * Stanford University School of Medicine is a world leader in pediatric heart transplantaion with ongoing research studies on the effects of transplantation on growth and development, longterm effects of immunosuppressive agents, and new methods for noninvasive monitoring of rejection. (http://www.med.stanford. edu/school/pediatrics/cardiology.html) Nursing Organizations whose members have expertise in hypoplastic left heart syndrome and its associated treatment modalities include: * American Heart Association (AHA) Council on Cardiovascular Nursing (CVN) (http://www.americanheart.org). The primary mission of the Council on Cardiovascular Nursing is to support the AHA mission to reduce disability and death from cardiovascular diseases and stroke. In addition, the Council identifies and articulates the areas in which nurses can lead in accomplishing the AHA's mission. As AHA volunteers, CVN Council members participate in writing groups and review committees, disseminate new scientific information through programs at scientific conferences, scientific statements and journal articles, advocate for cardiovascular health, make scientific discoveries and generate resources. * Society of Pediatric Cardiovascular Nurses, The Society of Pediatric Cardiovascular Nurses is an organization dedicated to the advancement of the understanding and science of nursing care for individuals and families with congenital heart disease. The members of this organization represent the leading pediatric cardiovascular centers in the United States, Canada and abroad. Distinguished members have key roles in pediatric nursing experience, research, publications and leadership. For information, please contact Cardiovascular Nurse Practitioners at (305) 663-8401.
Acknowledgments: The author gratefully acknowledges the review of this manuscript by the following individuals: Margaret T. Beard, PhD, RN; Tommie Nelms, PhD, RN; Debra Hanisch, MSN, RN, CPNP; and Paul C. Gillette, MD.
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This article discusses a sensitive issue that is complex and provocative, and will undoubtedly stimulate a variety of opinions. What do you think? Post your comments about this topic on the Pediatric Nursing Web site and read what others have to say as well. Visit our homepage at www.pediatricnursing.net and click on "Discussion." The opinions and assertions contained herein are the private views of the contributors and do not necessarily reflect the views of Pediatric Nursing Journal or the publisher.
Pediatric Ethics, Issues, & Commentary focuses on exploring the interface between ethics and issues in clinical practice. If you have suggested topics or cases for consideration in the column, please contact Anita J. Catlin, DNSc, FNP; P.O. Box 226, Pope Valley, CA 94567; (707) 965-2530.
Vicki L. Zeigler, MSN, RN, is a Doctoral Student, College of Nursing, and Graduate Research Assistant, Center for Nonlinear Science, Texas Woman's University, Denton, TX.
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