Académique Documents
Professionnel Documents
Culture Documents
Stacy Orloff
stacyorloff@thehospice.org
Barbara Sourkes
David Steinhorn
Suzanne Toce
And ex officio members: Marcia Lattanzi-Licht and Stephen Connor.
In addition to sponsoring this newsletter ChiPPS has completed several other
projects. If you would like more information regarding ChiPPS please contact
either Susan Huff at hawkhuff@msn.com or Stacy Orloff at
stacyorloff@thehospice.org.
We would like to share one very timely and exciting project ChiPPS is involved
with. NHPCO is a proud partner with ITVS, providing guidance and support,
including information regarding end-of-life care to the Lion in the House Project.
Lion in the House is an independent film, coming to Independent Lens on PBS
channels June 21 and 22, 2006. Lion in the House offers an unprecedented look
at the cancer journeys of five young people and their families over a six-year
period. Award-winning filmmakers Steven Bognar and Julia Reichert bring
audiences face to face with the uncertainty of the entire cancer experience and
its rippling effects on family, community, and professional caregivers. Many
pediatric hospice and palliative care providers are already developing local
activities in their communities to supplement this two-day television event. We
encourage all providers to consider offering outreach events leading up to and
including the broadcast dates. For more information see
www.itvs.org/outreach/lioninthehouse.
Members of this Education Work Group owe a huge debt of gratitude to Stacy
Orloff for her many efforts in guiding our efforts during our first year and for
inaugurating this newsletter in such fine fashion. In addition to continuing as CoChair of the ChiPPS Leadership Advisory Council, we are delighted that Stacy
will continue as a member of the Work Group.
We also want to thank you, the readers of this newsletter, for supporting the
ChiPPS PPC newsletter and hope that you are finding it useful. We are
especially grateful to everyone who has taken the time to offer feedback, support,
and suggestions regarding this newsletter. One of our primary goals is that you,
the reader, will offer ideas and suggestions regarding themes and content of this
newsletterboth current and future. What ideas do you have us to work on?
Send an e-mail to Christy (ctorkildson@georgemark.org) or Chuck
(charlescorr@mindspring.com). We especially want to publicize conferences
and other resources that you are aware of. Please send that information to
Sandy Macomber (smacomber@tidewell.org). In that connection, please note
that many activities related to pediatric palliative and hospice care will be
included in the forthcoming 7th Clinical Team Conference and Scientific
Symposium of the National Hospice and Palliative Care Organization to be
held in San Diego, California on April 26-28, 2006 (see the notice of this
conference in Sandys section on Educational Opportunities and Resources
later in this newsletter).
The overall theme of this issue of the newsletter is self care for all who work in
pediatric palliative care. That includes caring for oneself and caring for others,
caring for individuals and caring for the team.
Here is a brief Table of Contents highlighting each section of this newsletter in
the order in which those sections appear. You will notice that each of these
sections has a contact name and e-mail address attached to it. We provide
these contact names and e-mail addresses in order that you can get in touch with
the sections author(s) to seek ideas or exchange information.
Dale Larson
DLarson@scu.edu
Stress Management in Pediatric Palliative and Hospice Care.
As in previous issues of this newsletter, we have selected a theme around
which to organize the contents of this issue. In this case, our theme is self
carefor oneself and for others, for individuals and for the team. To address
this theme, we are delighted that Dale Larson, Ph.D., of Santa Clara
University agreed to contribute the keynote piece. Dale is well known to
everyone who works in palliative and hospice care, and his book, The
Helpers Journey: Working with People Facing Grief, Loss, and Lifethreatening Illness (Champaign, IL: Research Press, 1993) is an excellent
resource on this subject, one that is well worth reading by all hospice and
palliative care workers. Dales article identifies some of the distinctive
stressors in pediatric palliative and hospice care, and then suggests
strategies for stress management and self-care at both the individual and
team levels.
Donna Armstrong
darmstrong@hospicebg.com
Frequently Asked Questions: How Do We Support Ourselves?
In this section, Donna poses questions that often arise for care providers who
work in pediatric palliative and hospice care, and offers answers taken from a
survey of team members. Here, the questions and answers address: sources
of stress unique to those working in pediatric palliative care; meaningful
aspects of this work; how individuals are affected by their work and how they
cope with repeated losses; whether or not it is appropriate to share ones
feelings with patients and families; whether awareness of the crises and
tragedies that present themselves in this work is or is not a burden; what
agencies do to support team members; and what individuals do to take care
of themselves. Be sure to send any questions that you would like addressed
in future newsletters to Donna.
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 Helpers Pit
Emotional arousal and states of personal distress can lead you to fall into what I
have termed the helpers pit (Larson, 1993a). Staying emotionally balanced and
out of the helpers 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 clients 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.
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 everyones 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 teambuilding 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 outas 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
caringto take that extra empathy and to put it to workwithout 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.
What do you find most meaningful about your work with pediatric palliative
care?
How does your work affect you physically, emotionally, and spiritually?
Do you think it is appropriate to share your feelings with your patients and
families? To share a part of yourself?
With our work in palliative care, we realize each day is a gift, is this
awareness a burden? Would it be easier to be oblivious to all the crises
and tragedies?
It is definitely not a burden, but a gift. Having the attitude that each day is
a gift helps me deal with the loss of my patients because I consider the
moment in time they are in my life as a gift as well.
No it is not a burden. It provides a greater insight and world view. Would
it be easier? Yes, but a shallow existence may be easier but much less
fulfilling.
Never is the knowledge of the blessings of a brand new day a burden. We
need to realize that others do have crises and tragedies in order to keep
ourselves in line and appreciate our own blessings.
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 childs 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 persons 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.
Long-term relationships
funding issues)
Professional Variables
Lack of communication and/or support from
Lack of experience and preparation
administration
Moral and ethical dilemmas
Role conflict
Adverse effects of treatments
View death as failure
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 childs 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 patients 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
Derogatory or inappropriate
Changes in sleep
Hopelessness
jokes
Illness
Helplessness
Lack of clarity about
Fatigue
Loss of interest, meaning, and
professional role
purpose
Substance abuse
Burnout
Increased isolation
Relationships
Feel imposed upon
Memory disturbances
Conflicts at home and
Sense of professional
work
Impaired judgment and
loneliness
Severing long-term
reasoning
Social distancing
relationships
Short attention span
Contempt
Suicidal ideation
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 selfcare and learn various coping strategies to prevent or overcome the effects of
Physical Health
Eating well
Exercise and recreation
Restful and relaxing
activities (massage therapy,
napping, warm baths)
Biofeedback
Acupuncture
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
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 individuals 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 workrelated 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.
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 others 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-
Alan Johnson
Johnson.alan@tchden.org
Five areas of interest on staff support and care came to the surface as a result of
the responses we received from across the country. Where we deem it important
for our readers to be in touch with those who have given the ideas, we have put
the persons name following the program/idea. Where there is no name, we
summarize the content of what we received to indicate that many people are also
offering similar ways of offering staff support and care. We hope that the
summaries will confirm the good work that is being done as well as encourage
others to take up the challenges implicit in the ideas offered. The names of those
who responded and ways to be in touch with them follow this article.
1. What are the shared concerns, themes, and approaches? Staff is offered
counseling for individual as well as group settings by chaplains who also make
rounds, respond to referrals, and focus on staff as wall as patients and families.
The Employee Support Program is a resource for staff providing personal, private
counseling. There is an interdisciplinary committee that plans events to improve
employee morale. Mediation is offered in the chapel on a weekly basis and
bereavement rituals are shared at staff meetings.
Debriefings regularly occur with a designated leader, such as a Critical Incident
Stress Management Team or a regularly scheduled debriefing with an outside
consultant. During weekly psychosocial rounds losses are announced, along
with a summary of how the family and staff members are coping. Educational
sessions are provided to deal with various modes of stress management.
There are programs that are monthly, quarterly, or annually to remember the
children who have died. These are Memorial Services that staff plan and in
which they participate. Such services include appropriate readings, music,
stories, and photos in a supportive setting for the staff and the families of the
deceased child.
There are educational opportunities for staff in self care and off campus retreats.
There are hand massages weekly or free massages given regularly. Someone
needs to recognize the need for support and care in self and others. Getting help
doesnt happen if no one notices that someone is having a difficult time.
2. What are specifically unique, regular, and structured programs?
Come to Your Senses is a weekly staff rejuvenation program that
focuses on the five senses and adds a sixth one: Nonsense. It offers a
pause in the workplace to renew the staffs energies and is a resource
notebook with 6 CDs for the night as well as the day shifts. It can be led
by anyone. This resource is listed in the Educational Opportunities
section of this newsletter. Allison and Heather
The SEED program of the hospital is a way to recognize and support our
coworkers. It is highly visible and used throughout the hospital. There are
rewards that come from the recognition by coworkers. Allison
Good Grief is a monthly program focusing on an issue of grief affecting
the staff. It is a free lunch for one hour sponsored by the Bereavement
Council of the hospital. Allison
************************************************************************
These are the people from whom we excerpted portions of their responses
to the survey as they wrote it.
Allison Sickel. The Children's Hospital, Denver. Sickle.allison@tchden.org
Bridget Darden. The Children's Hospital, Denver. Darden.bridget@tchden.org
Donna Armstrong. Daniels Care, Hospice of the Bluegrass, Lexington, KY.
darmstrong@hospicebg.org
Heather Soistmann. The Children's Hospital, Denver.
Soistmann.heather@tchden.org
Karen Black. Our Children's House at Baylor, Dallas, TX.
KarenBl@BaylorHealth.edu
Kristen James. Children's Memorial Hospital, Chicago.
krjames@childrensmemorial.org
Trish Montano. The Children's Hospital, Denver. Montano.trish@tchden.org
These are persons who responded to our survey; their responses were
interwoven in the text of this newsletter on staff support and care.
Cynthia Trapenese. ctrapanese@bellsouth.net
Bev Hatter. Mary Bridge Children's Hospital and Health Center, Tacoma, WA.
Bev.hatter@multicare.org
Brent Peery. Memorial Hermann Children's Hospital, Dallas, TX.
Brent.peery@memorialhermann.org
Diane Thrush. Methodist Children's Hospital, San Antonio, TX.
Diane.thrush@mhshealth.com
Doreen Duley. Doreen.duley@chsys.org
Evelyn Keever. EKEEVER@chkd.org
www.nhpco.org/ctc2006
The 7th Clinical Team Conference (CTC) is specifically designed for the
hospice/palliative interdisciplinary team, the heart of quality end-of-life care. This
unique educational opportunity offers an intensive educational curriculum created
to equip, educate, and excite.
Journey of the Heart Conference
A Women's Retreat designed for moms who have experienced the loss of a
child. A weekend filled with love, hope, peace, comfort and encouragement.
The image of spring is one of refreshment and renewal and that's what you'll find
at the "Journey of the Heart" Women's Conference located in beautiful Palm
Springs, California.
May 19-21, 2006, The Doral Desert Princess, Vista Chino at Landau, Palm
Springs, CA; http://www.doralpalmsprings.com/gallery.htm
... Scholarships Available.
7th International Symposium on Pediatric Pain
June 25-29, 2006, Vancouver, BC, Canada
The 7th International Symposium on Pediatric Pain is hosted by the Canadian
Pain in Child Health Society for the Special Interest Group on Pain in Childhood
of the International Association for the Study of Pain.
For more information contact Patrick McGrath through the following web site:
www.ispp2006.com
Books/ Articles
The Helper's Journey: Working with People Facing Grief, Loss, and LifeThreatening Illness
by Dr. Dale G. Larson
Champaign, Illinois: Research Press, 1993. Paperback, 6 9, 292 pages. ISBN
0-87822-344-4
This groundbreaking work, written for both professionals and volunteers,
combines an inspiring view of helpers and helping with a focus on meeting the
personal, interpersonal, and team challenges of caring for people facing grief,
loss, and life-threatening illness. It teaches specific skills and strategies for stress
management, effective helping communication, interdisciplinary teamwork, and
increased personal and professional growth. Sensitively exploring the inner world
of helping, this award-winning book includes numerous case examples and
verbatim disclosures that powerfully convey the joys and sorrows of the helper's
journey.
I'm Here To Help: A Guide for Caregivers, Hospice Workers, and Volunteers
by M. Catherine Ray
Revised and expanded edition; New York: Bantam Doubleday Dell Pub (Trade
Paperback, 112 pages. Publication date: April 1, 1997. ISBN: 0553377973
Vachon, M. (1987). Team stress in palliative/hospice care. The Hospice Journal,
3, 75-103.
Vachon, M. (1997). Recent research into staff stress in palliative care.
European Journal of Palliative Care, 4, 99-103.
These two articles by one of the best known researchers who has studied stress
in adult hospice and palliative care for many years may offer useful insights for
those working in the pediatric field.
Websites:
Managing Stress For Hospice Professionals
Hospice workers can help each other by volunteering to take cases that may be
unduly stressful for co-workers with family crises. Doing Something Nice For
Yourself. We are often too generous.
www.americanhospice.org/articles/hospicestress.htm
New Tools:
Come to Your Senses
This is a program for rejuvenation and renewal for hospital staff. The intent is to
provide engaging, imaginative, creative, and participatory ways for staff to have a
regular, sustained time to restore themselves during their shift. These six
sessions were designed by Alan Johnson, MDiv, Staff Chaplain, and Kelly West,
RN, BSN, staff of The Children's Hospital, Denver, Colorado.
The six CDs in this program and the printed material in notebook form offer the
structure of six 15-25 minute sessions. Each CD contains a narrative and
explanation of the exercises; each notebook provides an outline of each session,
a list of materials that are needed, and instructions for the group facilitator. The
set is self-contained, meaning that anyone could be the convener of the
sessions. Each session focuses on one of the five senses, with the addition of
the sixth one, nonsense.