Identifying the Deliberate Prevention and Intervention Strategies of Pediatric Palliative Care Teams Supporting Providers during Times of Staff Distress

Abstract

Background:

Pediatric palliative care focuses on caring for children who are seriously ill and their families. These children are often attended to by many other providers who face various challenges as they support these families. Issues involving staff distress are common. Although involving pediatric palliative care teams is recommended, little has been discussed in the literature about the roles and deliberate strategies that pediatric palliative care providers deploy when supporting staff.

Objective:

This case description focuses on staff distress experienced by pediatric providers and aims to make specific recommendations regarding the ways in which pediatric palliative care teams can be helpful in supporting the needs of providers in these challenging care situations.

Design:

Study and analysis of four pediatric palliative care cases from multidisciplinary perspectives.

Conclusions:

In challenging pediatric patient care situations, pediatric palliative care teams may be utilized to support providers when they experience staff distress. Techniques also used with patients, such as active listening and nonjudgmental validation, can be useful. Respecting each person's opinion, establishing goals of care and fostering open communication about the complexities of each child's case can be helpful to prevent burnout and job loss. By promoting understanding and open communication, providers can feel supported in caring for children with serious illnesses and their families.

Introduction

The field of pediatric palliative care has grown tremendously in the last 20 years.^1–3 Initial emphasis in pediatric palliative care was placed on the patient and their family. The goal was to understand the family's perspectives about their child's care and to work with them in the most difficult times of decision making and suffering.⁴ The pediatric palliative care team's mandate was to improve the quality of life of children with life-threatening illness and to ease symptoms at the end of life.

While these continue to be critical aspects of what pediatric palliative care teams do, other areas of emphasis remain important. Staff distress is one such area that is often overlooked by pediatric palliative care teams or attended to without deliberate strategy. Supporting providers who care for these seriously ill children and their families in times of staff distress is a crucial service that pediatric palliative care teams can offer as part of their scope of practice. As a medical community, we are only beginning to understand the impact of these intense care experiences on providers.⁵ These experiences can be challenging, as they commonly involve severe prolonged illness, strong emotions, and the life and death of a child.⁶ Medical providers often have known these children and their families for many years prior to a child's death.⁶ They develop strong relationships and can become very involved with families.⁷ This closeness can be particularly intense for providers at the end of a child's life.^8,9

Staff distress describes the emotional and psychological sensitivity that arises during these complex care experiences. It is defined as the negative experience that occurs when a person feels that they cannot do what they feel is right.¹⁰ Much of what is known currently about staff distress comes from the nursing literature.^11–15 Staff distress can lead to emotional distress, unsafe or poor quality of patient care, burnout, job dissatisfaction and even job loss. Staff distress is not only an issue for nurses but also affects social workers, physicians, pharmacists, health care managers, and others who are involved in the care of seriously ill children.^12,16–18 In one of the largest studies of more than 500 multidisciplinary providers, staff distress was found more commonly in providers delivering direct patient care and in those working in intensive care settings.¹² A handful of preliminary strategies to assess for staff distress and combat its consequences currently exist.^14,19 These involve personal practices of self-care, such as exercise or regular therapy, and the use of trained specialists such as therapists. Although involving palliative care teams has been suggested as one potential way to cope with staff distress, little has been published about the various roles of pediatric palliative care teams in supporting medical providers when staff distress arises.

The following case descriptions offer various patient care situations highlighting different aspects of staff distress. They are presented as a starting point for reflection and conceptual analysis. Subsequent to each case, we specify the role of pediatric palliative care teams in addressing staff distress and offer a multidisciplinary perspective on how to deliberately support providers.

Case Descriptions

Case 1

Feroz was a 10-month-old boy with a rare immunodeficiency born abroad who was admitted to a large pediatric teaching hospital in the United States for a bone marrow transplant (BMT). Feroz's parents did not speak English and they also had a strong faith that played a significant role in guiding their decision making. Several days after Feroz's BMT he experienced progressive encephalopathy. More than nine subspecialty teams, including the pediatric palliative care team, were involved in his care. Over many months, Feroz's disease progressed and he became neurologically devastated with minimal brain activity. Although his family understood his poor prognosis, they believed they could not choose to withdraw life-sustaining treatments and transition to comfort-oriented care based on their religious preferences. For this reason, the family opted for tracheostomy and gastrostomy tube placement with the hope that they would be able to transfer Feroz back home where they would be surrounded by friends and family.

Case 1: Pediatric palliative care role/intervention

This case caused significant distress among intensive care unit (ICU) providers, chaplaincy, and interpreter services. Members of the team had different perspectives about Feroz's care and were distressed by his family's decisions. Nurses expressed the difficulties of caring for a child month after month who some providers perceived to have already died and chaplaincy was consulted multiple times to “correct” the family's understanding of religious expectations at end of life.

The pediatric palliative care team provided support to the providers caring for Feroz, particularly his bedside nurses, who were struggling to care for a child who was unresponsive for many months. Pediatric palliative care team members fostered opportunities to acknowledge the sadness surrounding this case and encouraged team members to openly express their emotions. The pediatric palliative care team attended weekly team and family meetings to discuss varying perspectives about Feroz's care and to debrief about difficult aspects. The pediatric palliative care team was also part of an ethics consult to ensure providers that all of their perspectives were being taken into account. The pediatric palliative care team advocated with nursing administration to ensure rotating schedules for bedside nurses. They also encouraged staff to have time and space for personal physical, emotional and spiritual care as well as adequate space away from all patient care activities when needed.

Case 2

Dinah was a 7-year-old girl with a multiply relapsed metastatic solid tumor that had been initially diagnosed 5 years earlier. Her family voiced that the pediatric palliative care team could be most helpful with care coordination and fostering communication between the primary oncology team, on-service oncology team, and the intensive care unit (ICU) team. They were determined to find any and all treatments available for their daughter.

Dinah's parents were very active in the research community and wanted her to receive an off-study oral experimental chemotherapy drug. There was notable disagreement and discomfort among providers about giving Dinah a medication not approved for this use and that she was too sick to swallow independently.

Case 2: Pediatric palliative care role/intervention

This case caused significant distress among staff for several reasons. Many providers believed that Dinah was experiencing pain as the result of aggressive cancer-directed treatment as well as disease progression. Several staff members believed that Dinah was being stoic to avoid disappointing her family and that she was undergoing too many treatments given the advanced stage of her disease. Staff also reported that throughout the course of Dinah's disease trajectory, she had been withdrawn and they worried about her isolation from her family and peers.

The pediatric palliative care team provided active listening and nonjudgmental validation as well as the opportunity to process and debrief about particularly challenging circumstances related to Dinah's care. The pediatric palliative care team encouraged providers to communicate their frustrations, concerns and sadness about Dinah's medical condition and the limitations of current treatment options. Debriefings included thorough analysis and consideration of the dimensions of distress being experienced by both the team and family. Dinah's family was able to openly discuss and express their grief about Dinah's deterioration and unlikely recovery. Medical providers were able to convey their concerns about suffering and to feel heard in the care of their patient. Medical providers were encouraged to address their personal well-being to help them cope with this challenging circumstance. The pediatric palliative care team also spent extensive time at the bedside talking with Dinah in order to better understand her symptoms. She met with pediatric palliative care psychosocial clinicians and her family received education about comfort oriented medications. She was able to start on scheduled pain medications and began having conversations with her family about her care.

Case 3

Donna was born at full term with multiple chromosomal deletions of unknown significance. She had mild congenital heart disease, a tethered spinal cord, and difficulty feeding. Her family was devastated by these diagnoses and verbalized their sadness that their daughter was unlikely to develop in a typical way.

After discharge from the hospital, Donna thrived at home, gaining weight and making some developmental progress. Her parents were very thoughtful about her medical follow-up and wished only to attend appointments and pursue testing that they believed would optimize her quality of life. This carefully selected care plan was challenging for her providers to understand. At 9 months of age, Donna presented in the emergency department in status epilepticus. In the emergency department, her family “refused” multiple doses of benzodiazepines, not wanting to intervene if this was the natural end of her life.

Her seizures eventually stopped and during her admission, Donna's parents worked closely with the neurology team to limit the use of long-term antiepileptic medications upon discharge. They also requested that they have a physician order for life-sustaining treatment (POLST) form²⁰ in the home in the event that Donna should worsen.

Case 3: Pediatric palliative care role/intervention

Many of the members of Donna's medical team, including those in pediatric palliative care, had difficulty understanding the limitations that Donna's parents wished to have for her care given how well she was doing. Staff in cardiology, neurology, ICU, and gastroenterology all expressed their distress in feeling that there was a “disconnect” between the challenges that Donna faced medically and the limits in medications and other treatments that her parents selected.

In Donna's case, the pediatric palliative care team played a significant role in helping the family to articulate their goals for their child and then in communicating these goals to the medical team with the intention of fostering alliance between the family and providers. The pediatric palliative care team created a safe and nonjudgmental environment for providers to ask questions about the parent's goals of care for Donna. The family had a strong sense of the importance of Donna's higher cognitive processing and interaction with the world. They felt that her neurologic function was an important indicator of quality of life and worried that her cognitive function was likely to be very limited. Once this was explained to medical providers, Donna's care could be reframed in relation to her family's goal of optimizing the preservation her cognitive function at the risk of disease progression and a shorter life.

Case 4

Alexa was an 11-month-old girl born with complex congenital heart disease. After Alexa had undergone multiple cardiac surgeries, she developed a severe life-threatening condition. Alexa's parents decided to pursue further treatment far away from their home with a group of specialists. In the cardiac intensive care unit (CICU), Alexa's total care was addressed. She remained too sick to leave the CICU, but well enough to be socially interactive and to be gaining developmental milestones. After over a year in the hospital, her parents were struggling to maintain their lives away from home and were often unable to be present at the bedside for months at a time. The pediatric palliative care team was consulted given Alexa's tenuous health, concerns about her quality of life, and to evaluate her family's goals of care. After months of conversation, it was decided that Alexa should return home to continue to receive medical care but no longer be considered for invasive treatments, such as transplantation.

Case 4: Pediatric palliative care role/intervention

The pediatric palliative care team played a significant role in supporting the staff members who cared for Alexa. In Alexa's case, many staff members developed a strong bond with her after interacting with her regularly for over a year. Medical staff, including physical therapists, feeding specialists and child life volunteers readily spoke of how frustrated they felt about Alexa's “abandonment” in the hospital. The pediatric palliative care team provided regular support to Alexa's providers, including supportive listening and normalization around difficult circumstances such as feelings of sadness about Alexa's lack of family presence. The pediatric palliative care team listened to staff concerns and created a nonjudgmental environment for staff to express their frustrations. The pediatric palliative care team helped facilitate Alexa's transfer back home and maintained open lines of communication with the family during the transfer process. They also worked to clarify the hospice and palliative care resources that would be available for Alexa and her family back home. Finally, the pediatric palliative care team encouraged staff to debrief about Alexa's case following her transfer and eventual death.

Discussion

Why is staff distress problematic?

Research has shown that left unaddressed, staff distress can lead to a variety of negative outcomes. Staff distress is likely to result in job dissatisfaction, emotional distress, poor quality patient care, burnout, depression, and even job loss.^12,16–18 When providers experience distress and do not have an opportunity to process their concerns they experience greater stress and discomfort, which not only impacts patient care but can also negatively impact staff members' personal wellbeing. Despite these negative consequences, there often is a lack of support in place for providers who are experiencing these issues. It is imperative that deliberate strategies be developed and incorporated into the standard support for providers caring for children with life-threatening illness.

Why is staff distress in pediatric care particularly difficult?

The severe illness and death of a child is out of the “natural order” of things. Bearing witness to the isolation or suffering of children is distressing for families and providers alike. When this strain is compounded by role confusion, despondency or conflict the impact can be more significant. Furthermore, pediatric cases involving children with life-threatening illness are often complex from a family systems perspective. Having a child who is sick can result in job loss as well as financial and social hardships for families—such as a significant emotional implications for siblings.²¹ These issues may further complicate care and decision making.

Prior patient experiences are also likely to impact staff perceptions and opinions about a family's medical decisions. These prior experiences can include witnessing or participating in the care of a child who suffered or who had a “bad death.” Feeling that this negative experience has not been factored into present cases can lead to frustration and distress for providers who desire to learn from past difficulties to improve the care of future patients. Continually working with children who are seriously ill may also impact staff on a deeper and more personal level, leading to moral distress. For example, if a medical staff member is caring for a patient who is the same age or has similar interests as their own child, this may prompt a more emotionally charged response and reaction to care decisions or patient experiences.

How can pediatric palliative care teams help to address staff distress?

Pediatric palliative care teams are often involved in cases in which providers are experiencing staff distress and can help facilitate patient care in many ways. Table 1 summarizes causes of staff distress from the presented cases as well as prevention and intervention strategies that can be provided by pediatric palliative care teams.

Table 1.

Causes of Staff Distress with Prevention and Intervention Strategies

Causes of staff distress	• Language/cultural/religious barriers • Differences in opinion among staff regarding treatment plans • Expectation for chaplaincy to broker cultural differences • Complexities of transferring very ill child • Family with strong opinions and outside knowledge/resources • Differences in perception of suffering between staff and family • Family narrative of defying odds • Family mistrust of medical team/medical team mistrust of family • Differences in perception of quality of life between staff and family • Parental rights/challenging implications of family-centered care • Physical distance between patient and family • Uncertain disease implications/prognosis • Limited treatment options • Staff emotional involvement
Prevention strategies	• Provide burnout education for staff • Implement proactive ethics education for staff • Provide bereavement education for family and staff • Provide anticipatory guidance for families and staff • Implement regular staff support groups • Suggest regular debriefings for staff involved in challenging cases • Schedule regular patient memorials for staff • Recommend regular team/family meetings for challenging cases • Provide palliative care education for all staff members
Intervention strategies	• Provide supportive listening for family and medical team • Help family to formulate and articulate goals of care • Ask for interpreter consult to aid in cultural brokering • Provide nonjudgmental validation for family and medical team • Advocate for regular team/family meetings • Provide support and advocacy for bedside caregivers • Advocate for family goals in team/family meetings • Brainstorm with family and staff on how to involve siblings/friends • Provide unbiased perspective when medical and family are at odds • Provide innovative symptom management strategies • Provide care coordination • Provide concrete medical guidance to families • Facilitate transfer for second opinions when needed • Facilitate debriefings for staff following death/transfer/discharge

As a consult service, the palliative care team can often bring a “fresh set of eyes and ears” and a new perspective to help bridge communication issues between provider teams and families. This can help to identify areas of alliance between families and providers in order to optimize care. Often when tension develops between providers and families, pediatric palliative care teams can serve as a sounding board for each party, ensuring all members feel heard. This is especially true for families who may need to process their feelings and perspectives aloud at a time when other providers with the longstanding relationship feel as though they are experiencing a misunderstanding with the family. Pediatric palliative care teams can be helpful in assessing families goals of care and in assisting families to use these goals to help in more immediate decision making. Pediatric palliative care teams are also able to provide additional symptom management strategies for patients in alignment with family's goals. Aiding with difficult symptoms can often be a source of relief for patients, families and providers. As a consult service familiar with patients with diverse disease processes and symptoms, pediatric palliative care teams can bring a unique perspective to end-of-life care.

Multidisciplinary pediatric palliative care teams are also able to offer an added layer of support to providers by using similar skills and techniques used with families. These skills include active and reflective listening, normalization of feelings and exploring available resources for coping and support. More specifically, social workers are traditionally part of pediatric palliative care teams and have the knowledge and skills to provide psychosocial support to staff as well as families.

Additionally, regular group discussions and debriefings about challenging situations can be helpful for all providers. Pediatric palliative care teams who often maintain a culture in which it is acceptable and encouraged to acknowledge the sadness surrounding illness and death can facilitate these support groups. These groups may be offered to providers as a way to bring various groups of individuals together to discuss helpful coping strategies. Similar to the way that pediatric palliative care teams encourage families to establish goals of care in a noncrisis time, processing the various dimensions of staff distress on a regular basis can be helpful in preparing staff for more acute patient care scenarios.^19,22,23 Pediatric palliative care teams can also partner with hospital administrators to develop more formal and routine system structures to address staff distress and to focus on its prevention.

Conclusion

Pediatric providers are at high risk for experiencing staff distress when working with children with serious illness. Pediatric palliative care teams may offer support for providers when they experience staff distress. Techniques such as active listening, reframing and nonjudgmental validation can be useful. Openness about the complexities of each child's care can be help to enhance mutual respect and honest communication. Supporting providers in times of distress is critical to providing optimal patient care and preventing provider burnout and job loss. By being deliberate and thoughtful about the role of pediatric palliative care in times of staff distress, providers can be supported in caring for seriously ill children and their families.

Footnotes

Acknowledgments

We would like to thank the exceptional pediatric staff at Boston Children's Hospital who work tirelessly to care for children with serious illness and their families and who were also willing to share their experiences with us. We also thank Nicholas Purol, LICSW, MSW, clinical social worker at Dana Farber Cancer Institute and Boston Children's Hospital; Jaime Goldberg, MSW, LCSW, ACHP-SW, social work specialist with Supportive Care Medicine at Cedars-Sinai Medical Center; and Debra Lotstein, MD, MPH, Director of the Comfort and Palliative Care Program at Children's Hospital Los Angeles, Department of Anesthesiology Critical Care Medicine, Associate Professor of Anesthesia and Pediatrics, Keck School of Medicine, University of Southern California for review of this manuscript.

Author Disclosure Statement

No competing financial interests exist.

References

American Academy of Pediatrics Committee on Bioethics and Committee on Hospital Care: Palliative care for children. Pediatrics, 2000; 106:351–357.

Wolfe

, Hinds

, Sourkes

: Textbook of Interdisciplinary Pediatric Palliative Care. Philadelphia, PA: Saunders Elsevier Health Sciences; 2011.

Himelstein

, Hilden

, Boldt

, Weissman

: Pediatric palliative care. N Engl J Med, 2004; 350:1752–1762.

Hinds

, Schum

, Baker

, Wolfe

: Key factors affecting dying children and their families. J Palliat Med, 2005; 8(Suppl 1):s70–78.

Hanna

: Moral Distress: The state of the science. Res Theory Nurs Pract, 2004; 18:73–93.

Feudtner

, Kang

, Hexem

, et al.: Pediatric palliative care patients: A prospective multicenter cohort study. Pediatrics, 2011; 127:1094–1101.

Houlihan

: A review of “Challenging situations when administering palliative chemotherapy—A nursing perspective. Oncol Nurs Forum, 2015; 42:319–320.

Truog

, Meyer

, Burns

: Toward interventions to improve end-of-life care in the pediatric intensive care unit. Crit Care Med, 2006; 34(Suppl):S373–S379.

Kain

: Moral distress and providing care to dying babies in neonatal nursing. Int J Palliat Nurs, 2007; 13:243–248.

10.

Jameton

: Nursing Practice: The Ethical Issues. Englewood Cliffs, NJ: Prentice Hall Inc., 1984.

11.

McCarthy

, Deady

: Moral distress reconsidered. Nurs Ethics, 2008; 15:254–262.

12.

Whitehead

, Herbertson

, Hamric

, et al.: Moral distress among healthcare professionals: Report of an institution-wide survey. J Nurs Scholarsh, 2014; 47:117–125.

13.

Klein

: Moral distress in pediatric palliative care: A case study. J Pain Symptom Manage, 2009; 38:157–160.

14.

Cohen

, Erickson

: Ethical dilemmas and moral distress in oncology nursing practice. Clin J Oncol Nurs, 2006; 10:775–782.

15.

Ferrell

: Understanding the moral distress of nurses witnessing medically futile care. Oncol Nurs Forum, 2006; 13:922–930.

16.

Wagner

: Moral distress as a contributor to nurse burnout. Am J Nurs, 2015; 115:11.

17.

Meltzer

, Huckabay

: Critical care nurses' perceptions of futile care and its effect on burnout. Am J Crit Care, 2004; 13:202–208.

18.

Pauly

, Varcoe

, Storch

: Framing the issues: Moral distress in health care. HEC Forum, 2012; 24:1–11.

19.

Weissman

: Moral distress in palliative care. J Palliat Med, 2009; 12:865–866.

20.

National POLST Paradigm. www.polst.org (Last accessed December 20, 2015).

21.

Bona

, Dussel

, Orellana

, et al.: Economic impact of advanced pediatric cancer on families. J Pain Symptom Manage, 2013; 47:594–603.

22.

Rushton

, Kaszniak

, Halifax

: A framework for understanding moral distress among palliative care clinicians. J Palliat Med, 2013; 16:1074–1079.

23.

Rushton

, Kaszniak

, Halifax

: Addressing moral distress: Application of a framework to palliative care practice. J Palliat Med, 2013; 16:1080–1088.