Improving the Quality of End-of-Life Care in Pediatric Oncology Patients Through the Early Implementation of Palliative Care

Prognostic Uncertainty

It is often difficult to predict the illness trajectory for a child and that uncertainty is a significant challenge that pediatric oncology providers encounter in their practice. Goals of care are almost always both curative and supportive in nature, that is, a child may be receiving curative therapies, such as chemotherapy and radiation, alongside other medications designed to alleviate disease-based symptoms and side effects, such as opioids and antiemetics. Often, curative treatments are tried until the patient exhibits clinical signs that he or she is at the end of life and clinicians are certain of the child’s imminent demise. If palliative care has not already been implemented, acknowledging the uncertainty of a prognosis may serve as an impetus for providers to incorporate it into the treatment plan, although implementing palliative care at the time that a child is already dying is a missed opportunity. Once a child is at the end of life, hospice care should be implemented and goals of care should be redefined. Mack and Wolfe (2006) found that even in situations when the disease trajectory had a more predictable period of decline before death, the implementation of palliative care still occurred late in the disease course, leading to additional missed opportunities for pain and symptom management.

In situations like this, parents may be in conflict with providers if they maintain a more hopeful outlook on the situation. This can go both ways, though. Physician communication can focus solely on the next treatment and end-of-life discussions may be put off since they are distressing to both provider and parent (Seth, 2010). With early implementation of palliative care, at diagnosis or soon thereafter, a parent may be able to see end-of-life care as part of the spectrum of palliative to end-of-life care and not a huge change.

If a child’s prognosis and end-of-life options are not openly discussed by the provider, then this may cause moral distress for nurses and other providers. While at the bedside, nurses may be asked questions by parents and family members about the likelihood of a child recovering, leading to miscommunication and mistrust at all levels. Moral distress can occur for physicians too. According to Davies et al. (2008), providers who feel obligated to continue aggressive curative therapies due to the parent’s inability to accept the reality of the situation may struggle with their own distress. Earlier collaboration with the palliative care team may help alleviate some provider guilt since the focus and goals of care would be on both comfort and cure from the beginning.

Parental Acknowledgement and Acceptance

When parents are confronted with the reality that their child has cancer and that the child will not survive the cancer diagnosis, they must have the opportunity to grieve the lack of curative treatment options, regardless of whether palliative care has already been implemented. Once the parent has grieved the loss of the future they had envisioned for their child, they may begin to embrace the end-of-life care philosophy and incorporate it into the plan of care in order to redefine goals. Denial, often associated with fear, is a powerful coping mechanism. Parents may intellectually understand what is happening to their child, but may consciously or unconsciously refuse to acknowledge it. Denial may also help parents have enough emotional stamina to support their child. However, this can become a significant barrier to the implementation of end-of-life care if the terminal nature of the disease is neither recognized nor acknowledged (Davies et al., 2008). Parents may have a difficult time seeing other children recover when their own child is not making the same progress. They may need to see actual physical or behavioral changes before they can begin to recognize that their child is dying (Davies et al., 2008). At that point, parents typically begin to feel more helpless. According to some collective norms, it is a shared belief that children have a right to adulthood. A childhood death is a disturbance in the natural order of life and therefore inevitably evokes feelings of vulnerability, powerlessness, and injustice (Sahler et al., 2000).

Unfortunately, due to lack of palliative care implementation, largely because of lack of understanding of what palliative care entails, parents of children dying from cancer report increased suffering at the end of life due to inadequate management of symptoms (Foster et al., 2010). This ultimately becomes a significant emotional burden on the family. In a study of 141 parents of children dying of cancer, over 10% of parents said that they would consider hastening their own child’s death when they believed that their child was in pain to alleviate suffering (Dussel et al., 2010). The quality of the dying experience is overlooked when emphasis remains on hope for a cure rather than comfort and quality of life. Communication barriers may also result in inadequate pain control and symptom management.

When cure is no longer an option, parents have to redefine hope. They often struggle with the decision to forego curative therapy even when it offers no further benefit. It is important to have a thorough discussion of shifting expectations from cure to comfort and redefining goals of care with parents to alleviate any lingering feelings of guilt that they may be experiencing (Kars et al., 2011). They also need to know and be reminded that implementing hospice care does not symbolize failure or giving up hope; it represents a new care emphasis on comfort and quality of life “[to] ensure a good life before a good death” (Neeley, 2009). According to Ann Armstrong-Daily, founding director of the Virginia-based Children’s Hospice International, parents are generally uncomfortable with palliative or hospice care because implementing either care is interpreted as “giving up.” Parents have told Ann that after enrollment in hospice, many regret not enrolling their children sooner. One parent stated, “I wish I’d known about [it] earlier” (Washam, 2010a).

Nursing Awareness

Nurses are advocates for their patients and globally, they may serve as advocates for services from which their patients would benefit. It is important for nurses to have an understanding of the scope of palliative care and how it differs from hospice care. As a member of a multidisciplinary treatment team, a nurse has a unique lens; he or she is trained in providing holistic care to a patient, so advocating for supportive care services is something that the nurse often considers. A nurse who has a foundational understanding of what palliative care is and what it can offer a patient is able to be a stronger advocate for the patient.

In 2010, a nursing research study was conducted in which 12 oncology nurses’ attitudes and perceptions toward palliative care were examined (Mahon & McAuley, 2010). Nurses were interviewed and asked the questions, “What is palliative care?” “Who should receive palliative care?” and “Who makes decisions about palliative care?” The nurses’ perceptions of palliative care primarily focused on symptom management and most were unable to distinguish between palliative care and hospice care. While a few participants felt that palliative care should be universally offered to anyone with a cancer diagnosis, the majority felt that palliative care was offered based on criteria, including illness specifics, degree of suffering, and end-of-life care. Of the sample of 12 nurses in the study, a handful of them did not see a role for themselves in decision making or advocacy regarding palliative care due to perceived limiting inclusion criteria.

When researched through the lens of palliative care, oncology nurses identified 5 primary nursing roles: caring, teaching, mobilizing, coordinating, and advocating while providing end-of-life care to their patients, with communication connecting all 5 of these functions (Pavlish & Ceronsky, 2009). A nurse is a caretaker who also exemplifies the characteristics of a teacher, a care coordinator, and a patient advocate, and must have the ability to identify and mobilize resources. In addition to the 5 primary nursing roles, Pavlish and Ceronsky (2009) also identified 7 professional attributes that were described in all 5 roles: clinical expertise, presence, family orientation, honesty, perceptive attentiveness, collaboration, and deliberateness. In order for a patient who is a candidate for palliative care to benefit from all the services it has to offer, the nurse must exhibit the aforementioned professional attributes and be intentional about his or her communication with the patient, family, and treatment team. A nurse may be the optimal member of the care team to assess the family’s understanding of the information and to provide clarification because the education that a nurse receives emphasizes relational caring (Davies et al., 2008).

Perception of Availability

Nurses are at the patient’s bedside more consistently than providers; therefore, this gives nurses a unique opportunity to advocate earlier and more strongly for palliative care services. In a 2013 study that gauged clinicians’ perceptions of the adequacy and availability of palliative care services for pediatric oncology patients, both nurses and advanced practice nurses identified unmet needs, whereas physician providers did not. Physicians were only recommending palliative care, not hospice care, when cure was no longer an option for the patients; bedside nurses and advanced practice nurses identified this as an area of opportunity to proactively involve palliative care earlier (Dahlberg et al., 2013).

Lack of Research

There is a growing body of research in this area, but more is needed. We do not know enough about how best to implement palliative care in the pediatric oncology population. Palliative care and hospice patients across the age continuum are considered vulnerable populations; therefore, there is debate over the appropriateness of recruiting participants for research studies (Wohleber, McKitrick, & Davis, 2012). Hinds et al. (2005) enrolled 20 pediatric and adolescent patients dying of cancer in a research study in which participation in 1 of 3 end-of-life care options was explored, including aggressive symptom management, a Phase I study, or a Do-Not-Resuscitate status. Of the 20 patients, only 8 made decisions about aggressive symptom management, labeled terminal care, and elected among palliative chemotherapy and radiation, oral pain management, and alternative therapies. Since children and adolescents are legally unable to advocate for themselves, their ability to participate in research is limited by age to assent or consent. Although perceptions of research studies are slowly changing and parents are becoming more willing to participate in studies in this area, there are some who may still be reluctant to do so when the research focuses on their dying child.

Supporting and Empowering the Parent

In order to support the parent of a child with cancer, it is important that the parent have an early understanding of what services are available to their child outside of the mainstream curative therapies, including chemotherapy, radiation, and surgery. Palliative care may be an afterthought by the treatment team at a time when the child is not doing well. When a parent hears that the palliative care team wants to consult on his or her child, there may be a sense of impending doom that the child is dying because of the misconceptions that exist about palliative care versus hospice/end-of-life care. Introduction to the full range of services that palliative care has to offer at a time when the child is doing well allows for information to be better absorbed and could help parents advocate for their children in more engaged ways.

Parents tend to place a higher value on relational care than clinicians; they value the expertise of the specialists and seek out emotional support from the treatment team (Heinze & Nolan, 2012). Parents appreciate empathy and genuineness on the part of health care professionals, including social workers, chaplains, child life specialists, and psychologists. A family-centered approach to palliative or end-of-life care (depending on the need) requires both the input of the parents and the health care team in order to truly meet the definition (Hawley, 2010). Having open conversations about unexpected changes in the child’s condition may help parents feel empowered to ask questions and have more of a voice in the decision making and goal planning.

Nursing and Provider Communication

Health care providers have educational needs regarding palliative and end-of-life care education. A recent study demonstrated that 75% of physician providers do not have education focusing on this aspect of care and 50% of nurses said that they feel unprepared and unqualified to manage end-of-life symptoms (Neeley, 2009). Davies et al. (2008) noted the importance of aligning the health care team’s treatment plan and goals with those of the parent and child. The physician is ultimately responsible for presenting all treatment options and helping the nurse shape goals of care.

Professional education regarding palliative care and end-of-life care requires a focus on the development of effective communication skills, as well as the allotment of adequate time to allow for discussions of this nature (Davies et al., 2008). A hands-on approach in learning how to care for end-of-life patients is beneficial; therefore, practicing sensitive conversations through role play is important (O’Shea & Bennett Kanarek, 2013). Although training programs designed to help guide the provision of evidence-based care and proper symptom management are in existence, they have not been standardized and consistently made available in the clinical practice setting (Heinze & Nolan, 2012). The implementation of such education and training does not need to be a significant health care cost, but does require a commitment by those individuals who are interested in understanding communication around terminal illness and death as part of the life cycle. Institutions would benefit from having a diversity of outlets to accommodate individual styles of learning, as well as a form of competency testing for these oncology nurses and end-of-life care providers.

Although dated, Sahler et al. (2000) identified 6 curricular elements that define pediatric end-of-life care that should be taught to aspiring nurses and clinicians in order to foster competence in providing patient-centered care. The elements include developing partnerships with families and supporting them in their caregiving roles, using cognitively and developmentally appropriate communication styles with families, sharing information with patients to help them feel included, serving the needs of the patient through the ethical principle of self-determination, managing pain and other symptoms, and addressing personal needs and challenges. These elements help provide a framework for communicating with an the child at the end of life and the family unit.

More recently, Morgans and Schapira (2015) identified 3 communication strategy ideals that oncologists should use when interacting with families, including recognizing process tasks when it comes to discussing prognosis, deciding on strategies when empowering families and presenting them with information about certain treatments, and employing sharpened communication skills, including assessing the child’s and parent’s understanding, to establish a therapeutic relationship. Morgans and Schapira believe that a physician should be as intentional about using these communication strategies as when he or she is writing chemotherapy orders. Pediatric oncology nurses may also benefit from these strategies. By being strategic about when information is given to a family and assessing understanding, nurses may be able to be more intentional with which communication styles they use.

Nurses are encouraged to adapt their communication styles to meet the needs of their learners. Visual aids and drawings may further help a child understand what is happening to him or her. Gradually introducing medical terminology rather than introducing it all at once is helpful for adolescents and young adults, as well as parents. It is appropriate for a nurse to ask a parent or older child about their preferred learning methods as well.

It is necessary for all health care providers, especially those who interact with the family unit, to learn to exhibit mindfulness and self-awareness. “Whether intentional or not [communication], occurs all the time between nurses and patients in every aspect of care” (Dahlin, 2010, p. 111). According to Bell (2012), providers’ spoken or unspoken communication can encourage or inhibit further conversations with patients and families. Allowing for silence in a conversation demonstrates compassion on the part of the clinician and gives families permission to express their grief. Repeated conversations are important because not all information is retained at the time of the first discussion. Nurses need to be able to learn the skill of listening with the intention of learning rather than reacting. “Listening is [the] most important gift palliative care specialists can provide to patients and their families” (O’Shea & Bennett Kanarek, 2013, p. 40). Patients and parents need to know that they are in a safe environment that is conducive to an uninterrupted exchange of thoughts and feelings.

Nurses and clinicians both need to have an awareness of how to effectively communicate with the family of a dying child. Refraining from making seemingly comforting statements, such as “I know how you feel” and replacing those with open-ended sensitive questions, such as, “Help me to understand . . . ” or “Tell me a little bit more about . . . ” can help identify the family’s needs and desires as well (Mullen, Reynolds, & Larson, 2015).

Self-reflection groups, professional counseling, and roundtable discussions are forums that nurses may find beneficial in helping them confront their own thoughts and feelings and develop relational skills sets. Without proper education, skills set, and support that nurses in this unique role require, the optimal patient care may not be delivered.