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Stress Management in Pediatric Palliative and Hospice Care

Stress Management in Pediatric Palliative and Hospice Care

Dale G. Larson, Ph.D., Santa Clara University
DLarson@scu.edu
We are shaped and fashioned by what we love.  Goethe

Most veteran end-of-life professionals pay special tribute to their committed and courageous colleagues working in the emerging specialty area of pediatric palliative and hospice care. They recognize that caring for seriously-ill children and their families, work that is both greatly needed and richly rewarding, is also terrifically challenging. The challenges include not just the everyday stressors of modern end-of-life care, like time pressure, late referrals, physical demands, team and organizational issues, and complex ethical dilemmas, but also repeated exposure to one of life’s greatest tragedies, the death of a child. This brief essay will highlight some of the distinctive stressors in pediatric palliative and hospice care and then suggest strategies for stress management and self-care at the individual and team levels.

Emotional Demands, Personal Losses, and Vulnerability

Care of parents and family members
Pediatric palliative care providers are lifelines for parents. Staff have intense personal involvement with parents and family members. When a child dies, these relationships continue, and staff serve as important resources for the bereaved. Family members typically expect these continuing involvements by pediatric staff and like them to attend bereavement services for their child and to remain available for contact after the loss (Macdonald et al., 2005).  Although staff usually welcome the opportunities for continuing contact and find them personally rewarding, these occasions represent an additional emotional demand.

A related emotional demand is that of repeatedly empathizing with parents and family members. This empathic relating is key to effective care, but it brings risks. Emotionally connecting with traumatized parents can sometimes lead to a kind of vicarious traumatization, which adds a dimension to the stress equation that is different from the exhaustion, demoralization, and diminished caring that characterize burnout (Larson, 2000).  In a helping relationship, these reactions can lead either to avoidance, distancing, and detachment or to tendencies to become overinvolved. Whether traumatizing or not, helping in this context is not going to be free of all distress. Helping  a parent to talk about death with his or her child  (Hilden & Tobin, 2003) is going to move you, maybe shake you. Being an expert companion and caring presence for a parent as he or she cries out in anguish is going to affect you profoundly. However, there is more than distress here—beauty, courage, healing, and growth are also often present in these powerful encounters. The adaptive challenges that you face in these helping encounters can make you more resilient and alive, but vulnerability and a kind of personal grief work are inescapable companions to this growth.

Care of the dying child
Caring for seriously-ill and dying children is extremely demanding, professionally and personally. Enhancing quality of life, responding to feelings and needs, and being a haven of safety and security in a time of chronic crisis—all require tremendous clinical skill and emotional involvement. As the illness progresses, particularly in a terminal hospitalization, each step toward greater intimacy, each discovery of a new quality in the child, of a way the relationship enriches both provider and child, becomes more poignant with the awareness of the impending death, and each must ultimately be assimilated as losses the provider must endure. Emotional involvement can be even greater if the palliative care team members are the same pediatric staff who cared for the child for many months or years, living through treatments, remissions, and recurrences with the child and the family. This history, and the attachments that come with it, can lead to strong staff grief reactions to pediatric deaths.

Strategies for Stress Management and Self-Care

Here are just a few recommendations for stress management and self-care at the individual and team level. Since stress results when demands exceed resources, each of the following recommendations is designed either to reduce demands or to strengthen resources and coping strategies.

Take charge
Perhaps the most important principle of stress management is to take charge. Change your environment or change yourself, and do not fall into the trap of believing there is nothing you can do about the stress in your work. Ask “What can I do to change this stressful situation?”  Allow some creative options to emerge, and then actively pursue one or more of these alternative behaviors. You can take charge by discussing a situation with a team member, concentrating on something good that could come out of it, or by looking for some small way you can control some of the stressful aspects of your work.

Practice the art of the possible
Unrealistic self-expectations can be a major source of stress. The best antidote is to practice the art of the possible and work consistently toward the goals that matter to you. In other words, develop realistic self-expectations without losing hold of the vision that inspires and guides you.

Stay out of the Helper’s Pit
Emotional arousal and states of personal distress can lead you to fall into what I  have termed the “helper’s pit” (Larson, 1993a). Staying emotionally balanced and out of the helper’s pit requires a special empathic stance toward the distress we encounter. Carl Rogers once made a distinction in his definition of empathy that is useful here. He described empathy as sensing the client’s private world as if it were your own but without ever losing the as if quality. We want to be close enough to have contact, but not so close that we lose our balance and identify our whole selves with what we encounter. To steady yourself and maintain this balanced emotional involvement, it is important to draw on the various coping resources (personal strengths, social support, clinical and stress management skills) that support you in your helping efforts.

Practice self-care
Giving to others must be balanced with giving to yourself. Discuss cases with colleagues, travel, attend workshops, take all your vacation time (!), develop your spiritual life, and do other things to find balance between giving to others and giving to yourself. When demands and resources are in balance, helping is a natural expression of the healthy human heart, and our caring connections with others in turn sustain our own health.

Exercise deserves special emphasis. Because stress is unavoidable, we need to make some of our stress-management interventions at a more downstream point in the stress cycle. Once the stress hormones have been released into your body, the best thing you can do is to get them out of your system, and exercise is probably the best way to do this.

Develop a strong support system
Self‑doubt and other uncomfortable feelings are unavoidable in end-of-life care. When these difficult experiences are not shared with empathetic others and normalized, they corrode from within as what I call “helper secrets” (Larson, 1993b).  A staff support group or regular peer mutual support meetings with a trusted colleague can be an excellent resource for coping with these internal stressors.

Acknowledge losses
Perhaps the most important guidelines for coping with the grief that is part of your work are to acknowledge its presence, accept it as part of the work you do, construct a personal philosophy of life that can make sense of the losses you encounter, and find supportive others, particularly colleagues, with whom to safely share your experiences. Because helper grief is not often discussed and is even to some degree stigmatized in the professional helping world, normalization of these grief reactions and acceptance from self and peers are essential. Organizational and team support are also needed to create opportunities for acknowledging losses in these ways. This support can take the form of providing bereavement sessions for staff following pediatric deaths or offering the flexibility needed for staff to attend funerals and have additional contacts with families.

Strategies for Team Stress Management and Self-Care

The interdisciplinary team is at the heart of pediatric palliative and hospice care because it takes a team to address the emotional, physical, social, and spiritual dimensions of care for children and their families. Physicians, nurses, social workers, chaplains, child life specialists, dietitians, music and other therapists, and other professionals all combine their expertise to meet the needs of patients and family members. Although stress-free teams do not exist, high team self-efficacy and collective self-esteem are powerful deterrents to stress and promote continued success and well-being. Team members are enabled to fulfill their personal missions as helpers while they pursue the team’s shared goals.

What can you do to make your team healthier and more productive? Some of the keys to creating a productive and healthy team are as follows.

Encourage shared leadership
Just as no single person can achieve the basic task or mission of the team, no single person can make the decisions and lead the team in every situation. Instead, team members must assume shared leadership responsibilities, and these include both task functions, like problem solving and building work agendas, and process functions like making sure everyone’s contributions are considered.

Recognize good work
Praise, awards, and recognition dispensed within the team are among the best buffers against stress. All team members need occasional affirmation of the good things they do and of their importance to the team effort.

Build caring relationships 
Share your best helping self with other team members. Openness, trust, respect, and authenticity should not be reserved for patients and family members, but should also be offered to colleagues. Empathy among team members and an atmosphere of goodwill lead to fewer stressful interactions and sustained personal growth of team members.

Empower one another
The interdisciplinary team is like a team of climbers working together interdependently to get to the top of the mountain. In the end, you are able to achieve something you could not do alone. It is important to overcome interdisciplinary myopia and to work to understand what other team members bring to the caregiving table. You can also teach team members from other disciplines skills and share knowledge with them, examples of what I call a kind of transdisciplinary team functioning that reduces interdisciplinary myopia and feelings of "This is my turf."

Study the team’s process
To be effective, the team needs to study itself. Take time to discuss how the team can work together more effectively to work through any problems that may exist.Be proactive and take time for the team to renew itself through regular team-building experiences like retreats, brainstorming sessions, happy hours, and social occasions.

Conclusion

The emerging specialty of pediatric palliative and hospice care, perhaps because of the profound rewards and daunting challenges it offers, particularly attracts highly motivated, committed, and empathic professionals. This is a great gift to the children and families you care for, but also a point of vulnerability for you. Research shows, in fact, that the most idealistic, altruistic, and committed helpers are among the first to burn out—as is a bright flame by virtue of its intensity. The trick is to find a way to allow this bright flame of caring to inspire great acts of caring—to take that extra empathy and to put it to work—without burning out. This is the challenge of caring. If you can establish a balance between the demands you face and the resources you have to meet them, between giving to others and giving to yourself, you can achieve both personal growth and professional success as you continue your important work to improve the quality of life for children with life-limiting conditions and their families.

References

Hilden, J., & Tobin, D. R. (2003). Shelter from the storm. Cambridge, MA: Perseus.

Larson, D. G. (1993a). The helper’s journey:  Working with people facing grief, loss, and life-threatening illness. Champaign, IL: Research Press.

Larson, D. G. (1993b). Self-concealment: Implications for stress and empathy in oncology care. Journal of Psychosocial Oncology, 11, 1-16.

Larson, D. G. (2000). Anticipatory mourning:  Challenges for professional and volunteer caregivers. In T. A. Rando (Ed.), Clinical dimensions of anticipatory mourning: Theory and practice in working with the dying, their loved ones, and their caregivers (pp. 379-395). Champaign, IL: Research Press.

Macdonald, M. E., Liben, S., Carnevale, F. A., Rennick, J. E., Wolf, S. L., Meloche, D., et al. (2005). Parental perspectives on hospital staff members’ acts of kindness and commemoration after a child’s death. Pediatrics 116(4), 884-890.