Abstract
Congenital heart disease presents complexities to physicians, parents, and patients. Barriers exist to clear communication and informed consent. This chapter addresses these concerns from the viewpoint of a cardiologists/ethicist involved in direct patient care for 32 years.
Key Words
Congenital Heart Disease, Decision Making, Informed Consent, DNR, Age and cognitive development, Life pathways for informed consent
The thoughts expressed in this chapter are derived from 35 years of working with families, colleagues, and ethics committees and from dedicated study of these issues. The intent is to promote reflection on the process of decision making in the care of patients with congenital heart disease. This includes the context of the parent, their family and friends, and the environment in the neonatal, pediatric, and cardiac intensive care units (which includes the physical setting that is typically alien and imposing to most families and the medical and professional staff, who interject their own experiences, biases, and usually well-intentioned attempts to be helpful).
Ethics
“Ethics is a branch of philosophy which seeks to address issues related to concepts of right and wrong. It is sometimes referred to as moral philosophy and can be divided into different subject areas including, amongst others, meta-ethics (e.g. the role of truth, God, reason and the meanings of various terms used); normative ethics (which focuses on how moral values are determined and what is needed to ensure that they are achieved) and applied ethics (examining controversial issues) (Fieser, 2006).”
Biomedical ethics is a discipline that is taught in most U.S. medical schools and often uses widely accepted principles and guidelines. These four principles are (1) beneficence—the obligation to do good, (2) nonmaleficence—the obligation to avoid harm, (3) autonomy—the principle of self-determination, and (4) justice—“fair distribution of scarce resources (distributive justice), respect for people’s rights (rights based justice) and respect for morally acceptable laws (legal justice) (Gillon, 1994).”
Many concerns with the care of children in intensive care areas revolves around autonomy and surrogacy. Autonomy has developed as a concept embraced by our society. Much of the discourse came from enlightenment philosophers.
According to Kantian ethics, autonomy is based on the human capacity to direct one’s life according to rational principles. He states, “Everything in nature works in accordance with laws. Only a rational being has the capacity to act in accordance with the representation of laws, that is, in accordance with principles, or has a will. Since reason is required for the derivation of actions from laws, the will is nothing other than practical reason.” (In Korsgaard, 2004) Rationality, in Kant’s view, is the means to autonomy. Autonomous people are considered as being ends in themselves in that they have the capacity to determine their own destiny, and as such must be respected. For John Stuart Mill, the concept of respect for autonomy involves the capacity to think, decide and act on the basis of such thought and decision freely and independently. Mill advocated the principle of autonomy (or the principle of liberty as he called it) provided that it did not cause harm to others: “That the only purpose for which power can be rightfully exercised over any member of a civilized community, against his will, is to prevent harm to others. His own good, either physical or moral, is not a sufficient warrant. … Over himself, over his own body and mind, the individual is sovereign” (Mill, 1968, p. 73). The principle of not causing harm to others (known as Mill’s “harm principle”) provides the grounds for the moral right of a patient to refuse medical treatment and for a doctor to refrain from intervening against the patient’s wishes. Nevertheless, Mill believed that it was acceptable to prevent people from harming themselves provided that their action was not fully informed. Nowadays, an autonomous decision might be described as one that is made freely/without undue influence, by a competent person, in full knowledge and understanding of the relevant information necessary to make such a decision. It should also be applicable to the current situation or circumstances.
In children or severely debilitated patients, this rationality is lacking, and so surrogate decision makers are given the task of making medical decisions to define what the best choice is for their critically ill dependents. The obligation of a surrogate is “to promote the patient’s welfare.” If the patient has been able to express preferences in the past and has done so, the surrogate must use the knowledge of these preferences, or at least the known values of the individual, in making the decision. If the patient’s own preferences are unknown or unclear, the proxy must consider the “best interests” of the patient. This requires that the surrogate’s decision promote the welfare of the individual. Welfare is defined as “the relief of suffering, preservation or restoration of function, extent and quality of life that a reasonable person in similar circumstances is likely to choose.”
Challenging Environment of Health Care Decisions
When an infant is born into a family, the family’s most typical and natural response is to love, hold, nourish, and protect that infant. Bonding after birth is a key component of care built into modern hospitals with birthing rooms and family attendance and participation in the birth.
When an infant is born with serious congenital heart disease or other birth defects, the process of nurturing and the ability to nurture are interrupted. The health care system moves in and adopts the role of surrogate family and begins a process of control to which the family must often accede. The physicians begin to bombard the family with information regarding the nature of the disease. The nurses, respiratory therapists, and other bedside caregivers control breathing, fluid, and skin care. Daily and continuing care of the infant is removed from the parents, causing a gradual withdrawal because they may feel inadequate or unable to bond with their baby.
Further adding to this confusion is the constant changing of bedside caregivers, who may rotate as often every 8 to 12 hours. It is often unclear to the family who is their infant’s primary physician or care provider/decision maker. Different physicians arriving at different times may say things that seem contradictory to the family. Different rounding times of specialty services interfere with clear communication to the family, who may not have timed their visits to this seemingly erratic and unpredictable schedule. The communication about the disease is further complicated when the mother is a teenager. (Approximately 1 in 10 births in the United States are to mothers less than 18 years of age.)
Age and Cognitive Development
In considering how to counsel a teenage mother who has just given birth to a baby with hypoplastic left heart syndrome (HLHS), it might be helpful for the physician to consider some of the following information about adolescent development.
In late adolescence the prefrontal cortex is still developing. Brain imaging studies demonstrate that this process of development continues into the mid-20s. This is significant because the prefrontal cortex is the part of the brain that works with the limbic system to regulate emotions. When an individual’s emotions are regulated, he or she is more capable of thinking clearly with concomitant awareness and understanding of his or her own perspectives, as well as consideration of the likely perspectives of others. Wise decision making occurs when the individual is not in the grip of intense fear—characterized by sympathetic system overload (reflected as a flight/fight response and manifested as anger, anxiety, or overly intense emotions) at one end of the spectrum or by a parasympathetic response in which the person shuts down or freezes and is unable to think or act, at the other end of the spectrum. This has been described in the literature as an internalized “window of tolerance” that each of us possesses. When life events or stressors overwhelm us and take us to the edges or outside of our window of tolerance, we become emotionally and cognitively underresourced and less capable of managing the cognitive and emotional demands of our lives. Because the prefrontal cortex and limbic system may not be fully available, due to normative developmental issues, this is a concern for the adolescent who is called upon to make critical decisions. The part of the brain most involved in self-regulation is simply not fully formed.
This limitation in emotional regulation and ability to engage in wise decision making is even more pronounced in adolescents and young adults who have grown up in stressful, dysfunctional, abusive, or neglectful households. Growing up in a single-parent household and/or in poverty are just two adverse childhood events that have the potential to impact the adolescent and young adult’s capacity to focus, access working memory, and use cognitive flexibility—all skills important for executive functioning and decision making.
Underdevelopment of the prefrontal cortex is also linked to deficiency in temporal integration, and this is another important factor for the medical team to appreciate when counseling young patients. Temporal integration provides the ability to separate past, present, and future events into a contextual framework that is distinguishable and then link them in a way that allows for reflection on the past, awareness of the present moment, and the capacity to imagine a future that may or may not be like the past or present moment. When a person lacks temporal integration, past, present, and future become merged into a perpetual present experience, and there may be a loss of imagining a future different from the present moment. A young mother might focus only on the emotions of the present situation and be unable to imagine what life would be like raising a child with a chronic disability. Consequently, she would be unable to discern how the meaningful events of her past may not be similar as she moves forward through choice into various future options. Additionally, she may also be in the grip of emotions from previous difficult and overwhelming situations in a way that collapses the present experience into the past experience. The consequence of this may be that she is unable to sort out her present experience as separate from previously emotionally painful experiences, thereby clouding her judgment. Robert Kegan described this by writing that “the future is not the present that hasn’t happened yet.” The future can change in multiple dimensions related to numerous factors (some internal and some external) that influence experience and context. A person with lack of mature temporal integration might let his or her past intrude on the present moment (e.g., by thinking “I’ve always made things work in the past,” or “things never worked in the past”), impairing the person’s ability to project that things might be different in the future. The ability to engage in wise decision making requires the ability to abstract and to integrate events over time. Lack of full development of the temporal cortex impedes this process.
Health care professionals who counsel patients need to have a well-developed sense of self-awareness and self-concept with a capacity to see and know one’s own mind and to have empathic awareness of what might be happening in the minds of others. Dan Siegel coined the term mindsight to refer to a process in which the individual is able to have insight into his or her own mind and apply this same insight into empathically seeing the differing perspectives in the minds of others and finally have the capacity to link his or her own mind with the minds of others in a way that is harmonious. An individual who has developed this capacity for mindsight has awareness of his or her own sensations, images, feelings, and thoughts, as well as the understanding that others are also having their own personal experiences of sensations, images, feelings, and thoughts that may be very different and for them, very valid. Additionally, people with mindsight are able to link their personal, differentiated processes coherently and harmoniously with another’s differentiated process. This means that these individuals have greater awareness and access to their subjective experience and to the subjective experience of others—understanding that both experiences are subjective and uniquely personal. They are also able to attune and regulate their emotional process and from a place of emotional regulation, help to regulate the emotions of others. As the individual self-regulates and relates with curiosity to another person’s experience, he or she is also more able to think rationally and objectively. Considering the biologic limitations that young patients bring to this process and the impairment that other patients may bring related to external stressors in their lives, the health care provider needs to develop an educated sense of mindsight and not simply imagine that the patient or family members have experiences or abilities similar to the provider’s own.
Whereas Siegel discusses empathy and understanding the mind of another as aspects of mindsight, Kegan, drawing on the research of Piaget, describes abstraction, or the ability to rotate objects, as a necessary developmental milestone for empathy. In other words, in order to understand that another person’s subjective experience may be very different from one’s own experience, there must be a capacity to rotate objects to see the same issue from multiple perspectives or positions. Because empathy requires an understanding of the perspectives of others or their subjective experience, empathy is not possible until a person has developed the cognitive ability of abstraction. Individuals who have not reached this level of development lack the capacity to perceive another’s perspective as being different from one’s own. There is a tendency to take things personally and to attribute one’s own meanings to another person. Interestingly, according to Kegan, many people well into adulthood have never developed the capacity for abstract thought.
This information about late adolescent development may be helpful for health care professionals when they encounter what might appear to be a limited capacity for understanding the perspectives and complexity that are a part of the decision making required of an adolescent mother with an infant who has a complex congenital heart defect. It may also be helpful for the health care professional because we are all in varying stages of our own emotional and psychologic development. Developmental maturity as described earlier is not age based and for our patients and for the medical team may be advanced or delayed and therefore be a factor in effective decision making. For health care professionals it is helpful to continue to develop mindsight, which simply stated is “unflinching self-awareness with empathic openness to the experiences of others.”
When the family and caregivers of patients with congenital heart disease are confronted with the complex physiologic concepts associated with decision making for medical and surgical care, understanding the anatomy and physiology is difficult. Many times the heart disease does not lend itself to an easy description found on the Internet. The bedside nurses, resident physicians, and intensive care physicians are often unsure about the details of the surgeries and long-term outcomes or do not discuss these issues due to the pressing need for interventions or practitioner time constraints.
In this context, who is making informed decisions for this infant? Is the mother informed enough or emotionally developed enough to competently give consent? Does the family act as a team to assist with this decision? Should the family acquiesce to the superior knowledge of the neonatologist, critical care physician, surgeon, or cardiologist? What factors go into these decisions?
Paternalism Versus Autonomy
Parents can usually understand and make surrogate decisions in the simplest cardiac cases, such as patent ductus arteriosus ligation, or in device closures of secundum atrial septal defects. In more complex congenital heart diseases the full extent and ramifications of the disease and consequences of treatment are much harder to grasp, and the parents are often left to trust that the treating medical team is recommending the best decisions for their infant. Although the informed consent documents that the parents sign attest to understanding the risks and benefits of the proposed treatment, the parents often need to turn to other hospital employees or family for support after the cardiologist or surgeon has left the bedside. The document in most instances does not ensure understanding of the particular procedure or all risks and benefits but instead demonstrates trust in the cardiologists and surgeons.
The fiduciary duty of the physician obtaining consent is not to make the best choice but rather to provide a duty of care, good faith, and competence in guiding the parents/guardians. To accomplish this, most congenital heart centers have multidisciplinary presurgical conferences to discuss treatment/surgical plans. In these sessions the primary cardiologist (or surgeon) acts as a surrogate in representing the agreed-upon best interest of the infant from the perspective of the medical team. They then return to the bedside to explain these plans to the family and gain assent and consent.
Providing Informed Consent for a Patient With Complex Congenital Heart Disease
In American society the medical community has decided it is best for the patient or the patient’s surrogate to know what medical treatment is being performed before that treatment begins. This process entails a “discussion” culminating in a signature on every consent form indicating that the family member has an understanding of the risks and benefits of the planned procedure. Ideally, the decision maker signing the document would have a full understanding of the care to which he or she is agreeing.
The problem with doing this for complex congenital heart disease can be best understood with an example: An infant is born with heterotaxy, asplenia, dextrocardia, abnormal pulmonary venous return, unbalanced atrioventricular canal deformity, ventricular inversion, double-outlet right ventricle, and malposition of the great vessels with a right aortic arch. For untrained parents, noncardiac bedside nurses, or even a medical student, an expectation that they can comprehend the anatomy, physiology, and gravity of the problem is unrealistic in the short term. The signed decision of the family more likely reflects whether or not they trust the team who is caring for their baby. If they trust the team, the family may sign the informed consent despite incomplete understanding of the full implications of risks and benefits. If they do not trust the team, then everyone is in for a difficult time.
In an ideal world, full informed consent consists of a long conversation and full understanding of the physiology and anatomy and surgical treatments and short- and long-term risk and benefits associated with these. The medical team should strive for giving full informed consent as the right thing to do, but being able to accomplish this in a thorough manner is difficult.
Barriers to fully informed consent are potentially numerous and can include age of the parents, understanding of pathophysiology, language, level of cognitive development, emotional and psychologic health, intelligence and education, stress from just having given birth, and situational depression from finding out their infant has heart disease and/or other significant diseases/syndromes. Parents and grandparents may be influenced in their trust of the physicians and nurses based on their previous experiences or based on what they have read in the literature or on the Internet. The choices and understanding of young parents are different than those of a 45-year-old mother of a patient with Down syndrome. Instability within the family and social issues such as family dysfunction, sleep deprivation, and poverty with lack of financial or transportation resources may present additional challenges.
Other factors may be affecting family decision making. Occasionally the parents have other children or other family members in a different city who require care, and so arrangements need to be made. Bringing the entire family to the hospital may impose logistic difficulties or constitute a great expense. The usual care of multiple children in a family setting is a full-time job. A suddenly imposed absence from a paying job may mean losing health care benefits and the ability to care for one’s family, so an important family figure may be torn between his or her need to show up at work and the desire to be present for these critical family events. Expenses related to staying in the hospital with an ill family member can cost a minimum of $30 to $50 a day with housing assistance such as Ronald McDonald House (personal experience). If the family does not want to eat only fast food and wants to stay at an average hotel for privacy and showering, the cost can easily triple that amount. The length of stay for many infants with critical heart disease is often greater than 2 weeks (creating a living expense cost of $420 to $2300 over and above the normal life expenses for a family). Although there are sometimes ways to provide help and support for families, this added stress (and financial concerns can be an enormous stressor for families who are barely making ends meet) should be appreciated by the health care providers.
Defining the Decision Maker
In legal and practical terms the mother has all the rights as a surrogate for the infant in decision making, even if she is less than 18 years of age. Of course, both parents have equal rights if they are both on the birth certificate and if those rights have not otherwise been reduced by a court. Surrogacy means that the designated guardian (parent) would make a decision considering “the best interest of the patient.” This requires that the surrogate’s decision promote the welfare of the individual. Welfare is defined as “those choices about relief of suffering, preservation or restoration of function, extent and quality of life sustained that reasonable persons in similar circumstances would be likely to choose.”
This life and death responsibility can be a huge burden to a young mother or father. In the case of congenital heart disease the physician does his or her best to explain the complex heart problem and tells the mother and available family members what plan is recommended. Because of the complexity of the diagnosis, the multiple steps and time required to achieve surgical palliations or corrections, the myriad complications to multiple organ systems that can occur, and the expected lifelong disability that accompanies many heart defects, there is often an enormous (virtually unattainable) challenge to the medical team to outline a cogent message that informs the consent for procedures and does not leave families in some confusion. Support staff (e.g., nurses, chaplains, social workers) who listen in on these informed consent conversations commonly describe that after the family has completed the process of signing needed documents after extensive conversations and the physicians have left, the family members frequently turn to the remaining caregivers and then ask for an explanation of their infant’s problems and for clarification of the medical/surgical plan. The primary cardiologists and intensive care physicians need to be attentive to this problem and strive for the best care standard of communication. A liaison such as a cardiac nurse—often a highly trained nurse practitioner—who is available daily can help clarify the message or redirect the physicians back to the bedside to help invite further explanation.
It is also important that the care team understand the family’s context. Where did this family come from? What are their resources? How many children or other family members are dependents in the family? What is a prolonged absence of the mother, father, or grandparent who is now required to be far from home mean to supporting the other family members left at home? What spiritual resources or experiences affect their decision-making ability? How much of this information that is acquired should go into counseling the family about the procedures and outcomes expected in their baby?
From the physician and caregivers’ viewpoint, their information and experience may give them a different view of the infant’s peril and outcome. (I [JB] have personally attended several national congenital heart disease conferences during which the audience of surgeons and pediatric cardiologists were polled regarding offering comfort care to a natural death versus having their hypothetical children undergo the multiple surgeries for HLHS. At least half of these professionals favored offering comfort care in this hypothetical situation.) This raises the ethical questions about what constitutes a reasonable quality of life and what constitutes futile treatment. (It also raises the question of how the moral biases of caregivers affect the counsel and actions in treatment of their patients.) None of the long-term outcomes includes a normal physiologic adult from HLHS palliation or, for that matter, for any of the patients with single ventricles. This invites a discussion of what level of survival and functionality constitutes a good outcome. With so many variables, should we allow/encourage acceptance of the natural death option? The resources required for lifetime care are enormous, and the psychologic toll on the family raising a child with chronic and sometimes debilitating disease can be significant. This discussion is offered only to remind the care providers of the difficulty of these decisions and of their long-term implications. There is no “right” answer. Therefore we simply recommend awareness that there are issues around the treatment decisions that extend far beyond our ability to “fix” the anatomic abnormality.
This question often comes up with patients who have trisomy 18 and the usual associated congenital heart disease of a large ventricular septal defect. Some of these patients live to be older than 10 years of age. Most patients die by 1 year of age. The cause of death is usually apnea or seizures. No child with trisomy 18 has an expectation of living an adult life. Given this information, how much palliation should be given to a patient with this burden of disease? If the family member wants the child to have heart surgery, should it be offered? If the family member desires a tracheostomy and ventilation for supportive care of the child, should be offered? This series of questions and concerns are almost universal when an infant is born with this disease. In contrast to the response to choices for HLHS patients, the physicians I have worked with at several institutions encourage minimal treatment and allowing natural death. In my (JB) experience, the bedside care becomes unequal as the treating nurses and physicians try to determine if the infant is in a comfort-care mode or a mode of surviving and going home. In this situation I find it best practice to partner with the family in discussing what treatment goals and outcomes are expected and not prejudge the imminent death of the patient. All patients deserve normative basic care if it does not increase pain and suffering. The concepts of pain and suffering must be discussed with the family of a patient with a terminal illness! The treating physician needs to be brave enough to walk this difficult path with the family. The family’s acceptance of quality of life and suffering are often different than that of the care team.
Multidisciplinary Cardiac Conference in Management and Decision Making in Cardiac Care
Throughout the United States multidisciplinary cardiac conferences occur to discuss surgical management and offer case presentation and management discussion for challenging patients. The concept is that more knowledge and experience applied to patients with difficult anatomy and physiology often yields the best treatment plans for these patients. Typically the patient has a history, physical, and information from echocardiography, electrocardiography, catheterization, and other imaging modalities displayed. The question is asked regarding the management, and discussion ensues. Several times a month a challenging patient case comes up who has multiple congenital anomalies in addition to the heart disease. The context of the burden of the other diseases often raises the question of whether treatment should be offered. This discussion then centers on the medical and surgical goal of treatment in these patients. Is the goal to avoid suffering in the patients? Is the goal to give them a normal life and expect them to become productive adults? Is the goal to allow them to be functional in their home, where they can remain in a state of dependency and be loved and cared for? For many practitioners the goal seems to be “let’s give this a try and see if we can make it better.” As success in cardiac surgery has allowed examination of collateral damage to other organ systems and development of statistics, the behavioral, psychologic, and neurologic sequelae of our actions are becoming apparent and are causing reflection. The community of caregivers for congenital heart disease needs to constantly analyze and be aware of the evolving data regarding life expectancy, neurologic outcomes, and social outcomes for our patients and to present these data to families to inform them of what we know and do not know as we ask them to journey with us in deciphering the natural history of treated congenital heart disease.
It may be fair to have an initial discussion about offering natural death in some cases. The ones who are best informed, the cardiologist and surgeons, should bear the brunt of decision making in some of these cases. In reality we are already deciding treatments for them because the cardiology team often begins care with central lines, prostaglandins, and vasoactive drips to stabilize the baby or keep the baby alive. In some cases in which a prenatal diagnosis has been made, these actions may have been discussed with the family well in advance. However, this is not always the case. As the months of care accumulate, the infant may have had multiple procedures, and the family is often looking to the team of providers to get their infant home. Many infants survive and go home, but others dwindle and succumb to a complication or reach a point where further palliation is not feasible. The burden of end-of-life/do-not-resuscitate (DNR) decisions is higher and more difficult for the family and the treatment team, and neither side is anxious to own the decision.
Spiritual history may be important to understanding how the family views these events. In some cases the family may see this outcome as punishment for indiscretions (use of drugs, illicit sex, or many other types of behavior). Some may see the birth of the abnormal baby as a gift from God because it presents a new challenge with lessons for the entire family. In matters of deciding for withdrawal of care or do-not-resuscitate status the parents or family members may not see this decision as being within their rights as human beings. If they believe “only God can take a life,” this often leads to requesting that everything be done. Even those on the medical team are uncomfortable with deciding to stop care and allowing death.
Very often the family also begins to exhibit forms of magical thinking. This often manifests as a prayer request that healing would occur instantaneously or that the medical diagnosis was wrong. This type of thinking is part of the grieving process and can be an impediment to making medical/surgical decisions. The hospital chaplains can be invaluable in helping to sort these issues out. They frequently spend long hours with the grieving family and come to understand the family’s view of the situation in ways that few other members of the health care team can fully assess. Often they are members of the ethics committee with some additional helpful training.
The nurses at the bedside have their own challenges. They may be performing shift work that may or may not be in their primary area of expertise. They may have been working long hours or have been on the same job for years and are starting to experience burnout and fatigue. It is possible that they may be additionally stressed by not having adequate education about their patient’s complex congenital heart.
Additional stress is added to the bedside nurse when his or her patients are hospitalized for prolonged periods of time. As the patient languishes in the ICU, the medical goals may become less clear. A sense of futility may occur when original medical goals cannot be achieved.
This problem is further amplified if the patient’s status has been declared do not resuscitate. Understanding of the short- and long-term medical goals becomes clouded. The nurse often wonders if certain treatments or medications are still indicated. The care team can be discouraged by a prolonged gradual downhill course that seems to have no conclusion except death. They may feel extra stress by wondering why the treating physicians and parents have not surrendered to the inevitable conclusion of this struggle. Communication with the family may become more strained as the ability to speak of progress is challenged. Prolonged exposure to dying patients in the ICU can also lead to burnout or posttraumatic stress disorder.
After a do-not-resuscitate order is on the chart, there is a change in perception of the patient. Before the patient was someone who needed everything done to preserve life, now the patient is perceived as someone who is dying. Often the bedside nurses and members of the team wonder what constitutes extraordinary care. “Should we order this laboratory test? Should we start this new intravenous infusion? Should we add this vasopressor?” The usually friendly team begins to withdraw from the family. The decision for death often makes most of the team members uncomfortable, and they are at risk for perceiving themselves as “failures.”
The decision for withdrawal of care has greater clarity than the order for do not resuscitate. Medical goals shift to avoidance of suffering with subsequent doses of narcotics and benzodiazepines that ease the patient’s process of dying. If the care team feels that further care is futile, then that needs to be expressed to the family and permission given for them to withdraw support. Futility is described as something that has less than a 1% chance of success by many publications from ethicists. The patient is described as terminal if he or she is not expected to live 6 more months with the present diagnosis. The order for do not resuscitate refers only to actions not taken when the patient has a cardiopulmonary arrest. The team must understand that the order does not lead to cessation of care and is different than withdrawal of care. Withdrawal of care means that the decision to allow natural death has occurred, and life-supporting/life-sustaining treatments are now being stopped. It is very important to remember the dignity of the dying patient no matter what the age or condition and to respect the deep emotions of the parents and family during this occurrence. When possible, sustaining treatment should be allowed until the family has supporting family members and friends nearby.
When a disagreement occurs within the medical team about the treatment desired (this usually involves withdrawal-of-care decisions), then an ethics consultation is warranted. The ethics consultation clarifies the issues by defining the medical goals and their achievability, the decision makers, the legality of decisions being made, and the contextual issues that influence these decisions. It often allows patients who are chronically ill to have an outside voice step back and speak to the situation. In the state of Texas the decision of the ethics committee is binding if it involves withdrawal of care. If the family disagrees with the ethics committee’s decision, they have 10 days to find another facility who will care for their family member. Much has been written concerning the pros and cons of this approach to decision making. Ideally the ethics committee should have a diverse membership and include nonmedical representatives.
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