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Stress in Pediatric Palliative and Hospice Care: Causes, Effects, and Coping Strategies

Karen Paradise Baranowski karen.baranowski@intermountainmail.org

Caring for dying children and their families can be challenging and stressful.  It is difficult to acknowledge that a child is dying and will not live a normal lifespan.  Clinicians share many of the same stresses that the child’s family members experience.  The strain, disruption, pressure, and depletion associated with such stress require significant personal and professional efforts to adapt and achieve balance (Davies & Eng, 1993)

We all experience stress in our lives, especially when working with dying children and their families.  This section will focus on some of the specific causes of stress when caring for children with life-limiting illnesses, the effects stress has, and ways to cope with the stress as individuals, teams, and organizations. 

Causes of Stress

Stress is any demand that exceeds a person’s ability to cope with or control it.  Stress is experienced from both our personal and professional lives.  In pediatric palliative care both the work environment and the nature of caring for dying children cause stress.  Barnes (2001) found that team conflict and communication problems among staff were more stressful than actually caring for the dying.  When stress is associated with caring for the child, it may be caused by an inability to relieve distressing symptoms or a lack of time to grieve after the death of a child (Barnes, 2001).  Table 1 summarizes some of the common causes of work stress.

 

Table 1:  Causes of Work Stress

 

Personal Variables

  • Personality characteristics (perfectionism)
  • Over involvement with patients
  • Identification with patients
  • Self-esteem
  • Sense of mastery
  • Purpose in life
  • Unrealistic expectations
  • Feelings of inadequacy
  • History of psychiatric illness
  • Emotional demands
  • Increased awareness of own losses, vulnerabilities, and fear of own death
  • Cumulative losses

Interpersonal Variables

  • Physicians’ failure to understand hospice
  • Conflicts with colleagues
  • Poor communication among staff
  • Lack of supportive, collaborative workplace relationships
  • Low team morale
  • Disagreement about goals of care
  • Patients’ family dynamics
  • Patient psychological issues
  • Poor relationship with patient/family
  • Patient and family stressors (degree to which patient/family accept illness and impending death, rate of patient’s deterioration)
  • Difficulty controlling patient’s pain/symptoms
  • Difficulty predicting when death will occur
  • Not being present when the patient dies
  • Caring for a famous, extremely angry, or depressed patient
  • Secondary traumatic stress (knowledge of another’s suffering or trauma and trying to alleviate it)
  • Long-term relationships
 

Health Care System Variables

  • Paperwork
  • Increased workload
  • Understaffing
  • Too many patients dying at one time
  • Decreased resources
  • Organization stresses (scheduling conflicts, funding issues)
  • Lack of communication and/or support from administration
  • Role conflict
  • View death as failure
 

Professional Variables

  • Lack of experience and preparation
  • Moral and ethical dilemmas
  • Adverse effects of treatments
  • Treatment errors
  • Professional liability
 
 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Along with the frequent causes of stress in working with dying patients there are also some distinctive causes of stress when working with dying children.  One stress unique to pediatric palliative care is the long-term relationship that often develops.  Pediatric clinicians are often involved from the time of diagnosis through phases of hope and despair, relapse, deterioration, death, and possibly beyond (Davies & Eng, 1993).  It is very difficult to watch a child’s condition deteriorate over time, especially when a close relationship has developed.  Professional boundaries and relationships are often challenged when working with dying children.  If the relationship becomes personal the clinician may feel more like a friend, will likely experience greater grief, and may have a hard time knowing when the relationship should end.  A professional relationship is one that is time-limited, goal-oriented, and patient centered with professional knowledge and skills employed in the patient’s behalf (Davies & Eng, 1993).  In some cases, involvement with families may go on for years after the death of a child.  The effect may be that clinicians become uncertain of their role and when to withdraw from relationships, resulting in stress in the caregiver (Barnes, 2001).

Another area of stress common in pediatric palliative care is the clinicians’ inexperience and lack of preparedness in caring for dying children and their families.  Until recently it has been challenging to prepare clinicians because of the lack of research and education available on pediatric end-of-life care.

Many pediatric patients still die in the hospital setting where the focus is on diagnosing, curing, and prolonging life.  Life-saving efforts are usually common when the patient is a child.  When working with the dying these skills are irrelevant and can lead to potential for conflict in goals, values, interests, and frames of references (Davies & Eng, 1993).

Prognostication of life expectancy in children is difficult.  There are very few prognostication tools or guidelines available in pediatrics.  Many parents are told their child will die within a few days and the child ends up living several years.  The challenges of prognostication increase stress among clinicians especially when a death is expected and does not occur or when the death is sudden and unexpected.  

Along with the stress experienced because of the nature of the work in caring for dying children, personal characteristics also influence the way in which clinicians are able to cope.  Some of the characteristics include clinicians’ attitudes toward death and terminal care, duration of nursing experience, ability to set personal limits, avoidance of over-involvement, letting needs be known, engaging in staff socials, keeping communication lines open, and attendance at funerals.  If the causes of stress are not managed effectively, physical and emotional manifestations of the stress may appear.

Effects of Stress

If clinicians fail to recognize and manage the causes of stress, it may lead to compassion fatigue, burnout, and even compromise the care provided.  Burnout and compassion fatigue are familiar in healthcare, as the stresses of the environment have overwhelmed healthcare workers’ abilities to cope.

In stressful times, those who provide pediatric palliative care may feel they are losing their own sense of self to the clients they serve.  Compassion fatigue is an emotional accumulation of dealing with the needs of others on a regular basis.  Compassion fatigue occurs when the clinician feels a state of tension and preoccupation with the client by re-experiencing their traumatic event, avoiding reminders of the event, and continual persistent discussion about the event.  In pediatric palliative care this “event” is often the death or dying experience of a child. 

The SIOP (2000) defines burnout as mental and physical exhaustion, indifference, sense of failure as a professional, and sense of failure as a person.  Those whose work revolves around the problems and challenges facing others are especially vulnerable to burnout; health care professionals head the list of those who are susceptible (SIOP, 2000). 

Burnout is seen as a multi-step process progressing slowly over time.  Initially, the individual may feel emotionally empty and physically exhausted.  The individual may feel overwhelmed and manifest symptoms of depression, poor concentration, insomnia, and changes in appetite.  The next step is a stage of indifference.  The individual becomes cynical, uncaring, unmotivated, and unable to communicate effectively.  The third step is a sense of failure as a professional, followed by a sense of failure as a person.  The last stage is often termed as ‘dead inside’ where the individual lacks affect and does his/her work without involvement, commitment, or enthusiasm (Barnes, 2001; SIOP 2000).

Accumulated stress occurs from both our personal lives and our work.  Clinicians must learn how to recognize sources of stress and should try to recognize in themselves and their colleagues the symptoms of stress, compassion fatigue, and burnout as soon as they arise.  Table 2 summarizes many of the common effects stress has on individuals.

 

Table 2:  Effects and Symptoms of Stress

Physical Symptoms

  • Changes in appetite
  • Gastrointestinal disturbances
  • Somatic complaints
  • Headaches
  • Exhaustion
  • Clammy hands
  • Increased motor activity
  • Changes in sleep
  • Illness
  • Fatigue
  • Substance abuse

Psychological symptoms

  • Frustration
  • Feeling depleted and irritable
  • Anger
  • Depression
  • Guilt
  • Nervousness
  • Low self-esteem and self-doubt
  • Hopelessness
  • Helplessness
  • Loss of interest, meaning, and purpose
  • Increased isolation
  • Memory disturbances
  • Impaired judgment and reasoning
  • Short attention span
  • Contempt
  • Suicidal ideation

Effects on Work

  • Questions ability to provide good care
  • Avoiding patients and families
  • Disinterest in and concern for patients
  • Believe patient’s complaints to be manipulative
  • Derogatory or inappropriate jokes
  • Lack of clarity about professional role
  • Burnout
  • Feel imposed upon
  • Sense of professional loneliness
  • Social distancing

Relationships

  • Conflicts at home and work
  • Severing long-term relationships

Stress may also affect interdisciplinary teams as a whole.  Teams that are under stress may experience increased staff turnover, increased missed workdays, decreased productivity, and patient dissatisfaction with care. 

Coping Strategies and Self-Care

Once clinicians recognize their reactions to stress they must utilize good self-care and learn various coping strategies to prevent or overcome the effects of stress.  Sherman defines self-care as “the self-initiated behavior that people choose to incorporate to promote good health and general well-being” (2004, p.52).  Clinicians must take care of themselves and identify coping mechanisms that are effective.  Along with the individual’s responsibility to take care of himself or herself there is also responsibility among employers to provide staff support. 

One of the first coping skills individuals must develop is the ability to come to terms with their own thoughts and feelings about children dying.  Staff must develop comfort in working with dying children and be able to move toward, rather than away, from them as they are dying.   Also crucial to pediatric palliative care is the establishment of professional boundaries with both the child and family.  This is crucial to be able to maintain therapeutic relationships.   Clinicians should be reminded that they are part of a team, and are not responsible to meet all of the patient’s and family’s needs by themselves (Children’s Project on Palliative/Hospice Services, [ChiPPS], 2004).

Clinicians must be able to balance their professional and private lives.  Dedicating efforts to family and interests outside of work will help maintain a healthy balance.  Barnes (2001) warns that staff should be aware of tendencies towards overwork and must learn to set their own personal limits, avoiding over-involvement, maintaining open communication with colleagues, and informing peers of particular needs as they arise.  Refer to table 3 for a summary of self-care and coping strategies.

 

Table 3:  Self-Care & Coping Strategies

 

Physical Health

  • Eating well
  • Exercise and recreation
  • Restful and relaxing activities (massage therapy, napping, warm baths)
  • Biofeedback
  • Acupuncture

Mental Health

  • Setting priorities
  • Saying no
  • Letting go of conflict
  • Keeping an open mind to new ideas
  • In-services and continuing education
  • Interests such as music or hobbies

Work Coping Strategies

  • Professional boundaries
  • Know why you chose a career caring for terminally ill children
  • Don’t view death as a failure.
  • Reflect on rewards of work and moments where you made the greatest difference
  • Speak with administrators for appropriate resources, staffing, and workloads
  • Taking time off
  • Working part-time
  • Reduce stressors
  • Join professional organizations
  • Explore professional and personal goals
  • Journal—express feelings about caring for patients
  • Patient memory books
  • Support from colleagues
  • Seek professional counseling
  • Define your role
  • Avoid distancing from patients/families
 

Emotional Health

  • Meditation
  • Reflection
  • Listening to quiet music
  • Letting go of resentment
  • Interacting with optimistic people
  • Enjoying fantasy and play
  • Keeping a daily journal
  • Speaking with colleagues or friends
  • Sense of humor
  • Self-confidence—competence and control
  • Social support
 

Intuitional Health

  • Religious/spiritual practices
  • Consider personal beliefs
  • Meditation
  • Mind-body-spirit connections
  • Relaxation
  • Ethics committees
  • Create a sacred place where you can retreat to collect yourself
  • Create a small “shrine”
  • Promote inner harmony
  • Self awareness
 

Individuals who have developed a wide range of coping skills through diverse life experiences will be better able to cope with the stresses of pediatric palliative care.  There are also several personality characteristics that appear to affect clinicians’ ability to cope with these stresses.  Some of these personal qualities include: a) high tolerance for ambiguity, flexibility, and an appreciation for individual differences; b) good external support networks and a realistic awareness of personal limits; c) a sense of humor; d) an open communication style and a tendency to value self-awareness as assets; e) empathy; and f) a willingness to continually learn (Davies & Eng, 1993). 

If burnout occurs or professional assistance is needed, psychotherapeutic intervention programs may help.  These programs focus on reducing the symptoms of stress, facilitating reintegration into work, preventing a relapse of work-related problems, and restoring the individual’s overall sense of efficacy and worth (SIOP, 2000).  Psychotherapeutic interventions may include relaxation training, stress management, cognitive therapy, and step-wise reintegration planning (SIOP, 2000).

Caring for children and their families effectively can only be accomplished if both the individual and the organization take full responsibility for dealing with work-related stress (Barnes, 2001).  Agencies should provide some formal means of support such as: individual counseling through employee assistance programs, staff support groups, and critical incident debriefings.  Inpatient units should be designed to have a home-like atmosphere.  Agencies should also make efforts to support clinicians and improve processes to decrease stress.  Table 4 lists several ways agencies can support their staff.

 

Table 4:  Agency Support

  • Debriefings and discussions of patients
  • Staff support groups
  • Remembrance services
  • Foster collaboration with physicians
  • Outreach programs and in-services to hospitals, physicians, and the community
  • Involve staff in forms development
  • Provide emotional support
  • Reassignment to different duties
  • Recognize the need for time off
  • EAP
  • Improve manager-employee relations
  • Open communication
  • Encourage development of coping skills
  • Assess staff needs and strategies for reducing stress
  • Survey clinicians’ knowledge deficits and provide learning opportunities
  • Classes in yoga, meditation, dance, sports
  • Recreational and social events to strengthen morale
  • Informal, outside of work activities
  • Good orientation for new staff
  • 1 on 1 supervision and monthly meetings

Clinicians must be prepared both emotionally and intellectually to care for dying children and their families.  The more prepared clinicians are, the less fear and stress they will experience.  Extensive orientation and on-going education for staff must be provided by organizations that care for children with life-limiting illnesses.

The best coping strategies for teams are to have high morale and good teamwork.  High morale is achieved with individual job satisfaction, job involvement, and peer support.  Teamwork is improved when there is a sense of belonging to an effective team.  In a study on a pediatric ward caring for children with life-limiting conditions, Barnes (2001) found that staff with lower levels of stress valued talking with colleagues.  Strong teams have good communication skills, creative thinking, provide social support for each other, and engage in skilled team building efforts.  Teams that have trust in each other’s abilities, strengths, and skills have more realistic limits of involvement of individual team members and flexibility in roles (Sumner, 2001).  Having good teamwork and high morale enables staff to support each other and deal with work stress.

Conclusion

Individuals who work in pediatric palliative and hospice care face many unique stresses and challenges in their work.  It requires a commitment from themselves and their agencies to foster a continual sense of renewal in their capacity to care for these children (Sumner, 2001).  Clinicians can best cope with the stresses of providing end-of-life care by: (1) learning what causes them stress; (2) learning how to recognize the effects of stress; and (3) developing coping skills and self-care techniques to conquer the stresses they encounter.  The responsibility of coping with work stress lies both on the individual and on the organization that provides care to dying children.

References

Barnes, K. (2001, May). Staff stress in the children’s hospice: Causes, effects and coping strategies. International Journal of Palliative Nursing, 7(5), 248-255. Children’s Project on Palliative/Hospice Services (ChiPPS). (2004). Caring for kids: How to develop a home-based support program. Alexandria, VA: National Hospice and Palliative Care Organization

Davies, B., & Eng, B. (1993, January-February). Factors influencing nursing care of children who are terminally ill: A selective review. Pediatric Nursing, 19(1), 9-14.

Sherman, D. (2004, May). Nurses’ stress & burnout. American Journal of Nursing, 104(5), 48-56.

SIOP (International Society of Pediatric Oncology) Working Committee on Psychosocial Issues in Pediatric Oncology.  (2000). Guidelines for the Recognition, Prevention, and Remediation of Burnout in Health Care Professionals Participating in the Care of Children With Cancer. Retrieved January 31, 2006, from The International Confederation of Childhood Cancer Parent Organisations Web site: http://www.icccpo.org/articles/psychosocial/guidelines_burnout.html

Sumner, L.H. (2001). Staff support in pediatric hospice care. In A. Armstrong-Dailey & S. Zarbock (Eds.), Hospice care for children (pp. 190-212). New York: NY: Oxford.