Educational Needs for the Nurse Caring for the Dying Pediatric Patient Rebecca Davidson
University of North Carolina at Chapel Hill
April 3, 2020
__________________________ JoAn Stanek DNP, RN, ANP-BC
Pediatric hospice and palliative care are aimed at improving the quality of life for dying children and their families. It is family-centered care that requires the management of end-of-life symptoms, compassionate communication skills with the patient and the family, and self-care of the nurse caring for the child. The need for education is apparent, as most children who could benefit from end-of-life care do not receive it. This may be due to unpredictable health outcomes of children, reluctance of parents to participate, or the refusal of end-of-life care. Despite these barriers, symptom management should be specialized for pediatric patients, with a focus on comfort rather than cure. Communication requires skill by the nurse, with a focus on quality of life, creating lasting memories, recognizing the child’s development level, and supporting bereavement of families. Self-care activities, such as unrelated hobbies and debriefing sessions, are needed to promote resilience in staff and prevent burnout. With baseline knowledge about these aspects of pediatric end-of-life care, the nurse is well-qualified to care for the dying child at the bedside and support the family. The purpose of this paper is to give an overview of pediatric end-of-life care for nurses in hospital settings caring for hospice and palliative care pediatric patients.
Educational Needs for the Nurse Caring for the Dying Pediatric Patient
Pediatric hospice and palliative care are known to improve the quality of life for dying children and their families. Each day, 2,500 adolescents and 1,400 preadolescent children in the United States are within six months of dying from a complex, chronic health condition (Akard, Hendricks-Ferguson, & Gilmer, 2018). However, it is estimated that 90% of pediatric patients who could benefit from end-of-life care do not receive it (Dillon, 2014). Although, most parents with dying children prefer for them to die at home, 82% of the 50,000 infants or children that die annually die in the hospital (Crozier & Hancock, 2012). Therefore, pediatric in-patient nurses must be well equipped to care for pediatric end-of-life patients. This includes education on effective symptom management, communication with dying pediatric patients and their families, and self-care of the nurse.
General hospice and palliative medicine were not recognized by the American Board of Medical Specialties until 2006. Once established, it set to improve the quality of life of patients facing life-threatening illnesses and provide bereavement support for surviving families
parents exhibit denial of their child’s terminal illness and refuse end-of-life treatment altogether (Dillon, 2014).
While developing competencies in pediatric hospice and palliative care, it is important to recognize how different it is from hospice and palliative care in the adult setting. The disease trajectories of children are often longer as a result of their variability. For example, the length of stay for pediatric hospice is approximately 103 days versus 66 days for adults (Johnston,
Rosenberg, & Kamal, 2017). The pediatric population encompasses a wide variety of developmental stages, requiring age-specific management during end-of-life treatment. In addition, the grief that follows losing a child is often significantly more intense than that of losing a spouse or parent. It feels unnatural and against parenting instincts (Johnston et al., 2017).
The need for education on pediatric end-of-life care is prevalent. In-patient pediatric nurses are in position to advocate for their patients and provide hospice and palliative care. Although hospice and palliative care vary in definition, this paper will refer to end-of-life care in general. The purpose of this literature review paper focuses on symptom management of the dying pediatric patient, communication with the patient and family, and self-care of the nurse throughout the course of care, and to state the need for education of pediatric nurses working in hospital settings about end-of-life care for children.
Literature Review Symptom Management
management (Zhukovsky et al., 2015; Hauer & Wolfe, 2014). Most research for end-of-life symptom management is based on adult care and it is important to note the differences between the two populations (Downing, Jassal, Mathews, Brits, & Friedrichsdorf, 2015). Pediatric
patients may not effectively verbalize or localize their symptoms, resulting in the need for a more in-depth assessment by the nurse (Chrastek & van Breemen, 2019). The nurse must take a developmental approach, demonstrate superb listening and communication skills, consider cultural practices, and include the family as the child’s ultimate knowledge base (Chrastek & van Breemen, 2019). Each care plan must be individualized. The most appropriate route of
administration, the compatibilities of medications, the side effects, and the benefits versus the burdens of therapy must also be considered (Chrastek & van Breemen, 2019). Symptoms of the dying patient are physical, emotional, social, and spiritual (Chrastek & van Breemen, 2019). Caring for the physical manifestations, however, is crucial to increasing one’s quality of life. Interventions may be pharmacological, nonpharmacological, or a combination of both.
Pain. Pain is often the first symptom addressed for a child on palliative care. The World Health Organization (WHO) defines pain as a multidimensional phenomenon with sensory, physiological, cognitive, affective, behavioral and spiritual components that is subjective (WHO, 2012). Pain is one of the most distressing symptoms experienced by the child and in turn, the family. Although pain occurs frequently at the end of life, it is often underestimated.
comprehensive assessment would include asking the child and the family how they describe pain at home, how the child acts when they are in pain, how the parents typically respond to the pain, and what historically works best to manage the pain (Downing et al., 2015). When the nurse understands the language and behavior of the family in response to pain, there is a better chance that it will be effectively treated (Downing et al., 2015).
The World Health Organization’s guidelines encourage the use of a two-step ladder for pharmacological pain management, excluding weak opioids, codeine, and tramadol (WHO, 2012). Codeine is considered unpredictable in children under twelve and therefore unsafe. Its metabolism differs amongst individuals and ethnicities and carries a lengthy list of negative side effects, including respiratory depression (Downing et al., 2015). Morphine outweighs the
benefits of codeine and tramadol and is therefore the opioid of choice in children with severe pain (WHO, 2012). Despite these findings, tramadol is still widely used, and several other mu-agonist opioids are common in pediatrics, such as fentanyl, oxycodone, hydromorphone, and methadone (Downing et al., 2015).
should be administered around the clock in addition to ‘as needed’ prescriptions used for breakthrough pain (Downing, et al., 2015).
Respiratory distress. Dyspnea and respiratory distress should be anticipated by nurses
when caring for an end-of-life patient. Parents frequently recall dyspnea as the most distressing end-of-life symptom to witness (Chrastek & van Breemen, 2019). Dyspnea is a subjective symptom, but may be displayed by increased work of breathing, panic, or agitation (Chrastek & van Breemen, 2019). This is seen in infants with retraction of the ribs and head bobbing for air. Children often describe dyspnea as feelings of suffocation (Chrastek & van Breemen, 2019). Dyspnea is accompanied by anxiety and panic. The more anxious the patient becomes, the more shortness of breath they experience and vice versa (Chrastek & van Breemen, 2019).
Pharmacological approaches for dyspnea include opioids, such as morphine, hydromorphone, and oxycodone (Albert, 2017). However, the situation surrounding drug administration must be considered for the most effective treatment. For example, temporary breathlessness may be treated best with a quick-acting drug, such as sublingual fentanyl, rather than a slower acting morphine via subcutaneous route (Chrastek & van Breemen, 2019).
Secretions. Excessive secretions may accumulate at the end-of-life and contribute to
they are to manage. Humidification and nebulized saline may help mobilize the drainage (Chrastek & van Breemen, 2019).
Positioning the patient to side-lying also assists with the drainage. Although it is instinctive to raise the head of the bed when a child displays difficulty breathing, this may be dangerous near the end of life. Bodily fluids may third space and invade the alveoli, resulting in pulmonary edema and increased shortness of breath. Therefore, utilizing postural drainage is best for allowing fluids to drain with gravity (Gupta & Gupta, 2018). In addition to positioning, adjust fluid intake and practice good pulmonary hygiene by suctioning the child’s secretions and educating the family on how to suction (Chrastek & van Breemen, 2019).
Anticholinergic medications such as glycopyrrolate may manage heavy secretions by drying them out and thickening the mucus (Albert, 2017). The nurse must then anticipate side effects such as urinary retention and constipation (Chrastek & van Breemen, 2019).
Nausea/vomiting. Nausea and vomiting symptoms are often worse than pain for many
end-of-life patients. Nausea has several potential triggers and is best treated by caring for the underlying cause (Chrastek & van Breemen, 2019). Nausea may be caused by pharmacologic agents, central nervous system changes, vestibular disturbances, or gastrointestinal issues (Chrastek & van Breemen, 2019). Antiemetics may be given proactively ‘around the clock,’ rather than ‘as needed’ (Chapman & Ellershaw, 2020).
not control their intake (Chrastek & van Breemen, 2019). Nutritional requirements are
significantly less in dying children compared to healthy children partially due to the deterioration of hunger and thirst mechanisms in the brain (Chrastek & van Breemen, 2019). Tube feedings should accommodate for this change. Otherwise, abdominal distention and gastrointestinal discomfort may occur, as well as vomiting and fluid buildup in the lungs (Chrastek & van Breemen, 2019). Because food is often used as a primary measure of comfort by parents, this change in status requires education for families. Families may view this lack of appetite as a sign the child’s condition is worsening or they are giving up. Nurses must find methods to decrease stress surrounding food intake and suggest other activities for families to engage in with their children, such as reading or listening to music (Chrastek & van Breemen, 2019).
Fatigue. Fatigue is the most common end-of-life symptom reported by parents, occurring
in 95% of dying children (Bogetz & Root, 2017). It often presents as physical weakness, depression, and inattention, leading to suffering and distress for both parents and children (Bogetz & Root, 2017). The feeling of being tired can be resolved by sleep, but fatigue is characterized by pervasive tiredness that does not respond to increased sleep (Bogetz & Root, 2017).
hospitalizations, and limited sleep during their visits. Sleep disorders such as insomnia, sleep walking, and night terrors are more common in seriously ill children than in healthy children (Bogetz & Root, 2017).
The variety of causes makes fatigue difficult to treat. Changes in sleep patterns should be monitored by patients or parents using sleep diaries. Seizures, sleep apnea, gastroesophageal reflux or muscle movements may be tracked with sleep studies (Bogetz & Root, 2017). Nurses must advocate for patients if specific treatments, such as diuretics and frequent nighttime suctioning, are worsening the fatigue and decreasing the child’s quality of life (Bogetz & Root, 2017). Decreasing the number of oral medications, utilizing longer-acting drugs, and removing monitoring devices for overnight use help with reducing sleep disturbances (Bogetz & Root, 2017). At the end of life, comfort outweighs the need for medications and frequent vital sign monitoring.
In addition, creating an age-appropriate sleep schedule is encouraged. The child should go to sleep and wake up at consistent times (Bogetz & Root, 2017). The nurse may include the family in deciding appropriate times. Planning activities or procedures for times when the child has the most energy will be the most beneficial for the patient.
Treating the underlying causes of fatigue are essential, although difficult to pinpoint. If pain is causing suffering, it is likely causing fatigue. Therefore, treating the pain should relieve the child’s fatigue. The goal of end-of-life care is to provide comfort, even if that means sacrificing procedures or discontinuing treatments that could prolong life.
Nonpharmacologic interventions. Nonpharmacologic measures are taken in addition to
alternative therapies to ensure evidence-based safety and to avoid adverse reactions. When used effectively, nonpharmacologic modalities can be beneficial at the child’s end of life.
Mind-body interventions may include hypnosis and music therapy (Chrastek & van Breemen, 2019). Clinical hypnosis is considered an altered state of awareness (Friedrichsdorf & Kohen, 2017). Concentration on the distressing symptom at hand may be refocused on thoughts of the imagination (Kohen & Kaiser, 2014). It is best used for pain and nausea and during procedures, such as lumbar punctures or blood draws (Friedrichsdorf & Kohen, 2017). Music therapy is also utilized for comfort measures and distraction from a distressing symptom (Chrastek & van Breemen, 2019).
Herbs, supplements, and nutritional treatments are biologically based alternative interventions. These modalities must be communicated with the health care team, as they commonly cause adverse reactions or toxicity with medications (Chrastek & van Breemen, 2019).
Aromatherapy can help reduce pain and inflammation. It may be in the form of diluted topical application or inhalation of essential oils, producing a calming effect on the central nervous system (Chrastek & van Breemen, 2019). Smell often reminds patients of memories, which if positive, may also relieve stress (Chrastek & van Breemen, 2019). Aromatherapy may be inhaled via infuser or soaking a cotton ball in essential oil and placing it beneath the nostrils (Chrastek & van Breemen, 2019). Examples of aromatherapy include lavender for relaxation, oral peppermint for gas, and oral ginger for nausea (Koulivand, Ghadiri, & Gorji, 2013; Ali et al., 2015).
around the body (Chrastek & van Breemen, 2019; “What is Reiki?”, n.d.). Reiki is based on the idea that unseen “life force energy” flows through our bodies and we become sick or stressed when that energy is low (“What is Reiki?”, n.d.). In energy therapy, this transferring of “life force energy” can promote healing and a sense of peace in the child (Chrastek & van Breemen, 2019).
Communication with the Patient and Family
Communication between the nurse and the dying pediatric patient is a crucial component of care. The proper approach to the pediatric end-of-life patient is centered around the patient and the family unit. Both require attention and a relationship with the nurses involved. Natural attachment to suffering children creates a unique relationship between the nurse and pediatric patient (Curcio, 2017). Communication involves discussions about therapeutic goals, the benefits versus burdens of therapies, and the individualized wishes of the patient and family (AAP, 2013).
(Crozier & Hancock, 2012). In addition, many studies have demonstrated that earlier
interventions likely result in “Do Not Resuscitate” orders, less aggressive care, fewer days spent in intensive care units, improved symptom management, and greater family satisfaction (Duncan, Spengler, & Wolfe, 2007; Lee & Dupree, 2008; Tan, Totapally, Torbati, & Woldsdorf, 2006; Wolfe et al., 2008).
Legacy-making activities have shown to improve quality of life in the hospital and bring patients a sense of peace. This can be facilitated by nursing staff (Akard et al., 2018). Children are often concerned about how they will be remembered, especially when they are mature enough to understand the permanence of death (Foster et al., 2009). They often seek affirmation that they are loved and desire to make lasting memories with their loved ones, so they are not forgotten (Levetown, Liben, & Audet, 2004). Nurses may assist patients with decisions over who will receive their belongings or take care of their pets, help with writing letters to loved ones and drawing pictures, and so on. If feasible, parents may wish to take their child on a special trip and the nurses should encourage these last wishes (Armstrong-Dailey & Zarbock, 2001). Legacy interventions have proven to ease patient and family coping and continue the building of bonds between patient and parent before the time of death (Foster, Dietrich, Friedman, Gordon, & Gilmer, 2012).
interact with health care professionals. Overall, quality of life is enhanced for both the child and the family with animal-assisted interventions (Akard et al., 2018).
Relationship between nurses and families. The relationships between nurses and
families are central to pediatric end-of-life care. Many families stress the importance of
transparency and easy access to nurses, as well as emotional support for their needs in addition to their child’s needs (Meyer, Ritholz, Burns, & Truog, 2006). This concept of open
communication is comforting to the family and gives them a greater sense of purpose while caring for their child in the hospital setting. If parents and siblings feel involved, the child’s quality of life is improved (Crozier & Hancock, 2012). In addition, it is important for
information communicated to the family to be consistent and realistic. Health care professionals should share their anticipations and believed timeline of the illness (AAP, 2013). Therapeutic communication may require repetition of information and facilitation of decision-making. Allowing the families to feel comfortable asking questions creates a better sense of rapport between them and the nurse (Crozier & Hancock, 2012; AAP, 2013). Respect is also cultivated by considering the values and preferences of the child and the family when designing a plan of care. This may incorporate cultural and spiritual practices, personal illness experience, and the developmental stage of the patient (AAP, 2013).
Therapeutic communication. Akard et al. (2018) outlined the SPIKES 6-step protocol
as a strategy for connecting with patients and families undergoing palliative care. Following this tactic is useful to health care professionals learning how to navigate these difficult conversations. The protocol’s steps involve:
(I) S-SET up the conversation;
(III) I-Obtain patient’s INVITATION;
(IV) K-Give KNOWLEDGE and information to the patient; (V) E-Address patient’s EMOTIONS with empathetic response; (VI) S-STRATEGIZE and SUMMARIZE.
Beale et al. (2005) summarized the “6 Es” that one should keep in mind throughout a conversation, such as one that may involve the SPIKE-6 step protocol. The 6 Es include:
(I) Establish an agreement with the family members and healthcare providers about open communication;
(II) Engage with the child at an opportune time, such as a new diagnosis, behavioral changes, or a change in prognosis;
(III) Explore what the child already knows and what she/he wants to know about the condition;
(IV) Explain medical information according to developmental age and cognitive abilities; (V) Empathize with the child’s reactions, allowing free expression of concerns;
(VI) Encourage a child through your presence, but not reassurance that “everything will be fine.”
Although dated, the 6 Es are important to address when caring for an end-of-life pediatric patient and navigating communication barriers. For example, pediatric prognoses are more uncertain than adults, health care professionals fear that conversations about end-of-life will cause further distress and weaken hope in families, and the overall discomfort of difficult conversations (Gysels, Richardson, & Higginson, 2004; Visser, Deliens, & Houttekier, 2014; Weaver et al., 2015). The families themselves may also present barriers to end-of-life
communication insinuates they have given up on their child. Others may be in denial of their child’s condition and refuse to consider hospice or palliative care (Rosenberg, Wolfe, Wiener, Lyon, & Feudtner, 2016; Zimmerman et al., 2016). Despite these obstacles, the nurse must emphasize the benefits of early conversations. Research shows that children and families who have early discussions about end-of-life are given more time to process the prognosis and show greater resilience throughout the end of their lives than children and families who do not have these discussions (Wiener, Weaver, Bell, & Sansom-Daly, 2015).
Silence. Silence is a therapeutic communication tool that is often overlooked in nursing.
However, in hospice and palliative care, silence allows a time for patients and families to fully express their wishes (Crozier & Hancock, 2012). Many nurses doubt their use of language and communication skills when having these difficult conversations, but the use of silence allows the nurse to listen effectively to the patients and families (Crozier & Hancock, 2012). Therapeutic presence also provides a calming environment for those who are suffering (Crozier & Hancock, 2012).
death and may display this by demonstrating severe separation anxiety (Brown & Sourkes, 2006).
Recognizing spiritual suffering can be done by an assessment of individual factors, family factors, and environmental factors (Foster et al., 2012). Individual factors include a child’s developmental level, physical experience of discomfort, and emotional symptoms of palliative care (Foster et al., 2012). Family factors involve the parents’ and siblings’ coping with the child’s illness, the communication amongst the family, and any religious or cultural aspects of the family (Foster et al., 2012). Lastly, environmental factors are based on the living situation or place of care, whether that’s in the home, the hospital or a hospice, as well as the social support of the child. Social support may include family, peers, the health care team, and outside community members (Foster et al., 2012).
Effective communication requires an understanding of developmental ability when working with younger children versus older children (Morgan, 2009). The article by Foster et al. (2012) utilizes the following table to outline the varying developmental understandings of death (Corr, 1995; Himelstein, 2006; Hinds, Oakes, Hicks, & Anghelescu, 2005; Hurwitz, Duncan, & Wolfe, 2004).
Death Concept Examples of Death Understanding
1-3 Death often seen as
continuous with life. Death and life are like wake and sleep.
Does not understand
irreversibility or permanence
“When will he (deceased person) wake up?”
4-5 Death is seen as temporary and reversible; may also see death as a punishment, or struggle with guilt because he or she is dying.
Does not fully comprehend the concept of irreversibility or permanence; believes in magical thinking or that you can wish someone dead
“Once you are dead are you always dead; but how long do you stay dead?”
“I am sorry that I am not getting better.”
6-9 Understands death is
permanent. Begins to realize people he or she knows will die and that dying means living functions will stop. A dying child may continue to experience guilt and shame from dying.
Understands irreversibility and begins to understand finality or nonfunctionality; heart stops, you do not breathe, etc
“Will dying hurt?”
“Is dying scary?”
“I know that your heart stops beating, and you stop breathing but what do you do when you are dead?”
“I am sorry that I am not getting better.”
10-13 Understands death is permanent and that living functions cease. Begins to understand death is universal.
Understands irreversibility and nonfunctionality and begins to understand universality
“I’m afraid if I die, my mom will break down. I’m worried that if I die, I will miss my family or forget them or something.”
14-18 Thinking becomes more abstract. One can objectively examine death. An adult understanding of death develops. However, death may be viewed as an enemy that can be fought against. Therefore, dying may be viewed as a failure.
Understands irreversibility, nonfunctionality, universality, and causality
“Everyone dies, it is part of life.”
“Death can happen from an accident, or an illness, or from a shooting, or something like that.”
“It is no one’s fault that I am dying, but I am going to do everything I can to fight against it.”
“I can’t believe I’m dying. This is so unfair! This stupid cancer has made me look awful.”
Spiritual suffering must be managed using a holistic approach. This includes physical, psychological, and social care (Levetown et al., 2011; Feudtner, Haney, & Dimmers, 2003; Wilson, Mazhar, Rojas-Cooley, De Rosa, & Van Cleve, 2011). For example, a child
cause the child to feel closer to death. Therefore, treating the physical symptoms first may ease the fears of death that come with spiritual suffering (Foster et al., 2012).
Spiritual health interventions by the nurse involve direct therapeutic communication. This includes listening and empathizing for the child and their individual struggles with death (Foster et al., 2012). Open-ended questions by the nurse allow the child to explore their own feelings about their illness and reflect on the life they have lived (Foster et al., 2012). The nurse may facilitate the child’s own self-care activities which can include art therapy, music therapy, and storytelling, all of which prove to reduce spiritual suffering in pediatric patients (Puchalski et al., 2009; Foster et al., 2009; Foster et al., 2012).
Care of the family after death. The loss of a child is a traumatic experience for parents. The nurses involved in their child’s care should be prepared to assist with bereavement once the child has passed (October, Dryden-Palmer, Copnell, & Meert, 2018). Immediately after death, the nurse should provide adequate time for the family to stay with the body and minimize noise and disruptions outside of the patient room (October et al., 2018). If possible, education about postmortem care should be provided to families prior to the death (October et al., 2018). Creating keepsakes for the parents is often helpful for their grieving process. This may include a
handprint, a lock of hair, or a recording of the child’s heartbeat (October et al., 2018). Keepsakes have proven to ease the family’s transition from hospital to home and provide a physical
remembrance of the child’s final moments with family (October et al., 2018). If the parents are comfortable, the nurse may dress the child, remove medical devices, and provide skin care to make the child look more humanized (October et al., 2018).
conversations and information difficult to process (October et al., 2018). It is important to ensure parents that their questions can still be answered later and to provide them with bereavement resources before their departure. This may include contact information for the unit itself (October et al., 2018). Many parents appreciate informal bereavement support from hospital staff, such as sympathy cards, letters, e-mails, and attendance at funeral services (Macdonald et al., 2005). Nurses should emphasize the benefits of formal bereavement programs for families, either programs held in the hospital or outside resources. Effective bereavement programs recognize the death of their child, the process of grief, how to decrease isolation during the grieving period, and how to reach out for assistance (October et al., 2018). Commonly used bereavement
programs include online support groups, disease-specific support networks, bereaved sibling’s grief camps, and religious-based grief support (October et al., 2018). Community support may include local chaplains, hospices, funeral directors, social workers, and palliative care teams, and nurses may encourage meetings with these resources as well (October et al., 2018).
Self-Care of the Nurse
nurses may turn to feelings of helplessness, guilt, anger, sadness, and anxiety, quickly resulting in burnout and high turnover rates (Morgan, 2009).
There are many coping strategies that can be utilized by pediatric nurses caring for end-of-life patients. Many hospice nurses recommend finding an outlet outside of work (McConnell & Porter, 2017). Common activities include exercise, reading, practicing mindfulness, and exploring one’s own religious faith (McConnell & Porter, 2017). Peer support, however, is repeatedly expressed in the literature as an important tool for coping. Open discussions with colleagues are more effective than confiding in friends and family outside of the hospital (McConnell & Porter, 2017). Many nurses admit that bringing work-related stress into
conversations with friends and family is rarely helpful because it’s difficult to feel understood and confidentiality can easily be broken. In addition, if the support the nurse is seeking is at work, returning to work is viewed more positively (McConnell & Porter, 2017).
times with friends or family, or engaging in informal discussions with colleagues. Inner self-care encompassed meditation, mindfulness, and spiritual practice (Mills et al., 2017).
Bereavement debriefing sessions are one of the most common interventions for social self-care amongst palliative care nurses. A regular, structured, and dedicated clinical reflection not only provides support and learning opportunities, but also shows a unit the organization’s commitment to nurses’ well-being (Taylor & Aldridge, 2017). Bereavement debriefing sessions most commonly occur within the week after unexpected deaths and deaths of long-term patients (Taylor & Aldridge, 2017). They aim to support health care professionals in managing grief and providing emotional support using a structured format (Taylor & Aldridge, 2017). An effective debriefing session should focus on the emotions of the nurse and the relationship the nurse had with the deceased patient (Taylor & Aldridge, 2017). Open-ended questions are best in initiating these heavy conversations (Taylor & Aldridge, 2017). Nurses may first reflect on the patient circumstances, addressing what it was like to care for the patient, what parts of care were
distressing, and what was satisfying about caring for the patient. These opening questions should initiate a conversation about the full picture, including the positive aspects of the care (Taylor & Aldridge, 2017).
Next, it is important to address the grief. Physical, emotional, behavioral, or spiritual responses to death should be normalized by the facilitator to encourage honest responses (Taylor & Aldridge, 2017). Nurses may be asked about what they’ve experienced since the death.
the patient and family. Once this height of emotions is reached, it’s important to address self-care (Taylor & Aldridge, 2017).
Coping strategies should be reviewed, as well as restating the support nurses may receive at work from colleagues and supervisors who are familiar with the case. Questions should be geared towards implementing this experience into future care. Nurses may be asked how this patient will inspire them in caring for future patients and what they’ve learned (Taylor & Aldridge, 2017). To close, it is essential to acknowledge the work of the nurses involved in the care of the patient. Letting the nurses know that their work was valued by the patient, family, and the hospital will provide them with confidence in their abilities going forward (Keene, Hall, & Rushton, 2010). Despite the positive outcomes of bereavement debriefing sessions, many nurses find these opportunities to be limited. It is the organizations responsibility to collaborate with nurses and counselors to offer this structured support (Taylor & Aldridge, 2017).
Self-care involves reflecting on the positives of these experiences as well. A qualitive review by Beaune, Muskat, and Anthony (2017) suggests that many pediatric nurses who care for dying children experience the phenomenon of personal growth. Personal growth is defined as positive psychological change following adversity (Beaune et al., 2017). This may span into enhanced interpersonal relationships with coworkers. Close relationships with fellow nurses often act as a buffer to the negative outcomes. There is a sense of comradery between those who fight for a similar cause, which in this case, is fighting for the highest quality of life left for the dying child (Beaune et al., 2017). Many nurses also report rewarding feelings of benevolence. They feel reassured that their hard work contributed value to a patient and especially their family (Beaune et al., 2017). Pride in ones work often counterbalances the emotional exhaustion
(Beaune et al., 2017). In addition, these experiences bring together interdisciplinary teams on the units. Nurses, physicians, social workers, and many other employees on the floor, feel an
increased sense of unity after caring for these patients and families (Beaune et al., 2017).
The need for education of pediatric nurses in hospital settings to understand the various aspects of end-of-life care is prevalent in today’s health care. Despite parents’ wishes for their children under palliative care to die in the home, too many die in the hospital, leaving health care professionals unprepared for these traumatic events. Education for pediatric nurses should include effective symptom management, therapeutic communication, and self-care of the nurse. Symptom management must be addressed proactively, with a focus on common end-of-life symptoms such as pain, dyspnea, excessive secretions, nausea and vomiting, and fatigue. Nurses must be familiar with common pharmacologic treatments and the most appropriate routes of administration. Nonpharmacologic interventions should be considered as well. Communication between families and nurses must be initiated early in the disease trajectory and with
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Author Title Year Published Findings
Hendricks-Ferguson, V.L., & Gilmer, M.J.
Pediatric palliative care nursing
2018 The need for
pediatric end-of-life care.
Primary resource for communication between with the patient and family of a dying child.
Albert, R.H. End-of-life care: managing common symptoms
approaches to dyspnea and heavy secretions.
Ali, B., Al-Wabel, A., Shams, S., Ahamad, A., Kahn, S.A., & Anwar, F.
Essential oils used in aromatherapy: a systemic review.
2015 The use of
peppermint and ginger in aromatherapy. American Academy of Pediatrics Pediatric palliative care and hospice care commitments,
guidelines, and recommendations
between nurses and families.
The consideration of developmental level while communicating with the dying child. Armstrong-Dailey, A.
& Zarbock, S. Hospice Care for Children 2001 Legacy-making trips for families. Beale, E.A., Baile,
W.F., & Aaron, J. Silence is not golden:communicating with children dying from cancer.
2005 The 6 Es of
communication with the dying child. Beaune, L., Muskat,
B., & Anthony, S.
The emergence of personal growth amongst healthcare professionals who care for dying children
2017 A qualitative review
of nurses who
experienced personal growth while caring for a dying child. Bogetz, J.F., & Root,
Fatigue in children with serious illness
2017 End-of-life fatigue.
Brown, M.R. & Sourkes, B.
Psychotherapy in pediatric palliative care
2006 Separation anxiety in
Ellershaw, J. and days of life antiemetics at end-of-life.
Chrastek, J. & van Breemen, C.
Symptom management in pediatric palliative care
2019 Primary source of
Corr, C.A. Children’s
understanding of death: striving to understand death
understandings of death.
Crozier, F. & Hancock, L.E.
Pediatric palliative care: beyond the end of life
2012 Primary source of
communication with the patient and family.
Curcio, D.L. The lived experience of nurses caring for dying pediatric patients
2017 The unique
relationship between the nurse and a dying pediatric patient. Dillon, P.J. Pediatric hospice care 2014 The need for
pediatric end-of-life care.
Downing, J., Jassal, S.S., Mathews, L., Brits, M. &
Pediatric pain management in palliative care
2015 End-of-life pain.
Duncan, J., Splengler, E., & Wolfe, J.
Providing pediatric palliative care: PACT in action
2007 The benefits of early
interventions in end-of-life care.
Feudtner, C., Haney,
J., & Dimmers, M.A. Spiritual care needs of hospitalized children and their families: a national survey of pastoral care providers’ perceptions
2003 Spiritual suffering at
Foster, T.L., Bell, C.J., & Gilmer, M.J.
Symptom management of spiritual suffering in pediatric palliative care
2012 Spiritual care for the
Foster, T.L., Dietrich, M.S., Friedman, D.L., Gordon, J.E., & Gilmer, M.J.
National survey of children’s hospitals on legacy-making activities
M.J., Davies, B., Barrera, M., Fairclough, D., Vannatta, K., & Gerhardt, C.A.
and siblings’ reports of legacies created by children with cancer
activities for the dying child.
Friedrichsdorf, S., & Kohen, D.
Integration of hypnosis into pediatric palliative care
2017 Clinical hypnosis as a
mind-body intervention. Goddard, A.T., &
The role and impact of animals with pediatric patients
2015 Animal therapy to
improve quality of life.
Gok, G., Cox, N., Bajwa, J.,
Christoudoulou, D., Moody, A., Howett, D.
Ultrasound-guided injection of
botulinum toxin A into the
submandibular gland in children and young adults with
2013 Side effects of
excessive secretions in pediatric patients.
Gupta, L. & Gupta, H.
Physiotherapy for respiratory conditions
2018 Postural draining for
excessive secretions. Gysels, M.,
Richardson, A., & Higginson, I.J.
Communication training for health professionals who care for patients with cancer: a systematic review of
barriers in pediatric end-of-life care.
Hain, R., Devins, M., Hastings, R., & Noyes, J.
Paediatric palliative care: development and piolet study of a “directory” of life-limiting conditions
2013 Grief for a dying
Hauer, J. & Wolfe, J. Supportive and palliative care of children with metabolic and neurological diseases
2014 The effect of poor
Himelstein, B.P. Palliative care for infants, children, adolescents, and their families
understandings of death.
Hinds, P.S., Oakes, L.L., Hicks, J., & Anghelescu, D.L.
End-of-life care for children and adolescents
Houskamp, B.M., Fisher, L.A., & Stuber, M.L. Spirituality in children and adolescents: research findings and implications for clinicians and researchers 2004 Nonverbal communication with dying pediatric patients. Hurwitz, C.A., Duncan, J., & Wolfe, J.
Caring for the child with cancer at the close of life
understandings of death.
Johnston, E.E., Rosenberg, A.R., & Kamal, A.H.
Pediatric-specific end-of-life care quality measures: an unmet need of a vulnerable population.
2017 Length of stay for
pediatric hospice. Grief for a dying child.
Kang, T., Hoehn, S., Licht, D.J., Mayer, O.H., Santucci, G., Carroll, J.M., Long, C.M., Lemisch, J., Rourke, M.T., & Feudtner, C.
Pediatric palliative, end-of-life, and bereavement care
2005 Involving older
children and adolescents in decision-making.
Keene, E., Hutton, N., Hall, B., & Rushton, C.
Bereavement debriefing sessions: an intervention to support health care professionals in managing their grief after the death of a patient
2010 Confidence in the
nurse caring for the dying pediatric patient.
Kohen, D., & Kaiser,
P. Clinical hypnosis with children and adolescents – what? why? how? origins, applications and efficiency.
2014 Clinical hypnosis as a
Koulivand, P.H., Ghadiri, M.K., & Gorji, A.
Lavender and the
nervous system 2013 The use of lavender in aromatherapy. Lee, K.J. & Dupree,
Staff experiences with end-of-life care in the pediatric intensive care unit
2008 The benefits of early
interventions in end-of-life care.
Levetown, M., Liben, S., Audet, M.
Palliative Care for Infants, Children, and
Adolescents: A Practical Handbook
dying child. Levetown, M., Liben,
S., Audet, M
Palliative Care for Infants, Children, and Adolescents: A Practical Handbook (2nd edition)
communication with dying pediatric patients.
Spiritual suffering at end-of-life.
Maben, J., Peccei, R., Adams, M., Robert, G., Richardson, A., Murrells, T. Morrow, E.
relationship between patients’ experiences of care and the influence of staff motivation, affect and wellbeing
2012 Nursing support.
Macdonald, M.E., Liben, S., Carnevale, F.A., Rennick, J.E., Wolf, S.L., Meloche, D., & Cohen, S.R.
Parental perspectives on hospital staff members’ acts of kindness and
commemoration after a child’s death
2005 Care of the family
McConnell, T. &
Porter, S. The experience of providing end of life care at a children’s hospice: a qualitative study.
2017 Self-care of the nurse.
Meyer, E.C., Ritholz, M.D., Burns, J.P., & Truog, R.D.
Improving the quality of end-of-life care in the pediatric intensive care unit: parents’ priorities and recommendations
2006 The relationship
between nurses and families of dying children.
Mills, J., Wand, T., &
Fraser, J.A. Self-care in palliativecare nursing and medical
professionals: a cross-sectional survey
2017 Primary resource for
self-care of the nurse.
Morgan, D. Caring for dying children: assessing the needs of the pediatric palliative nurse
understandings of death.
October, T., Dryden-Palmer, K., Copnell, B., & Meert, K.
Caring for parents after the death of a child
2018 Care of the family
after death. Puchalski, C., Ferrell,
B., Virani, R, Otis-Green, S., Baird, P., Bull, J., Chochinov, H., Handzo, G., Nelson-Becker, H., Prince-Paul, M., Pugliese, K., & Sulmasy, D.
Improving the quality of spiritual care as a dimension of palliative care: the report of the
2009 Spiritual health
interventions for the dying child.
Rosenberg, A.R., Wolfe, J., Wiener, L., Lyon, M., &
Ethics, emotions, and the skills of talking about progressing disease with terminally ill
adolescents: a review
2016 Barriers in pediatric
Srouji, R., Ratnapalan, S. & Schneeweiss, S.
Pain in children: assessment and nonpharmacological management
2010 Misconceptions of
pain in children.
Tan, G.H., Totapally, B.R., Torbati, D., & Wolfsdorf, J.
End-of-life decisions and palliative care in a children’s hospital
2006 The benefits of early
interventions in end-of-life care.
Taylor, J. & Aldridge, J.
Exploring the rewards and challenges of paediatric palliative care work – a qualitative study of multi-disciplinary children’s hospice care team
2017 Self-care of the nurse.
Urbanski, B.L. & Lazenby, M.
Distress among hospitalized pediatric cancer patients modified by pet-therapy intervention to improve quality of life
2012 Animal therapy to
improve quality of life.
Visser, M., Deliens, L., & Houttekier, D.
Physician-related barriers to
communication and patient- and family-centered
making towards the end of life in intensive care: a systematic review Weaver, M.S.,
Heinze, K.E., Kelly, K.P., Wiener, L., Casey, R.L., Bell, C.J., Wolfe, J., Garee, A.M., Watson, A., & Hinds, P.S.
Palliative care as a standard of care in pediatric oncology
barriers in pediatric end-of-life care.
Wiener, L., Weaver, M.S., Bell, C.J, Sansom-Daly, U.M.
Threading the cloak: palliative care education for care providers of adolescents and young adults with cancer
2015 The benefits of early
interventions in end-of-life care.
Wilson, K., Mazhar, W., Rojas-Cooley, T. De Rosa, V., & Van Cleve, L.
A glimpse into the lives of 3 children
2011 Spiritual suffering at
Wolfe, J., Hammel, J.F., Edwards, K.E., Duncan, J., Comeau, M., Breyer, J., Aldridge, S.A., Grier, H.E., Berde, C., Dussel, V., & Weeks, J.C.
Easing of suffering in children with cancer at the end of life: is care changing?
2008 The benefits of early
interventions in end-of-life care.
World Health Organization
WHO guidelines on the pharmacological treatment of
persisting pain in children with medical illnesses
2012 The definition of
End-of-life pain management.
Pain medication route of administration. Zimmerman, C.,
Krzyzanowska, M., Leighl, N., Rydall, A., Rodin, G., Tannock, I., & Hannon, B.
Perceptions of palliative care among patients with
advanced cancer and their caregivers
2016 Barriers in pediatric
Zhukovsky, D., Rozmus, C., Robert,
Symptom profiles in children with
2015 The effect of poor
R., Bruera, E., Wells, R.J., Cohen, M., Chisholm, G. & Allo, J.
advanced cancer: patient, family caregiver and oncologist rating