NHPCO ChiPPS Pediatric Palliative Care Newsletter

Issue #4; March, 2006

Welcome
by Charles Corr (charlescorr@mindspring.com) and Christy Torkildson
(ctorkildson@georgemark.org)
Welcome to the fourth issue of our ChiPPS electronic newsletter! This newsletter
is a project of the Education Work Group of ChiPPS, the Childrens Project on
Pediatric Palliative/Hospice Services of the National Hospice and Palliative Care
Organization.

Childrens Project on Palliative and Hospice Services: An Update

Susan Huff
hawkhuff@msn.com

Stacy Orloff
stacyorloff@thehospice.org

The Childrens Project on Palliative and Hospice Services (ChiPPS) is the

Pediatric Leadership Council of the National Hospice and Palliative Care
Organization. In 1998, an interdisciplinary group of pediatric hospice and
palliative care professionals met in Dallas Texas. This meeting was the birth of
ChiPPS. The goals of ChiPPS include supporting education, improving quality,
and increasing access to pediatric hospice and palliative care.
The current leadership council is composed of 13 professionals representing
Canada and the United States. Members include:
Cochairpersons: Stacy Orloff and Susan Huff
Chuck Corr
Mary Jo Gilmer
Nancy Hutton
Peter Lund
Stacy Remke
Maria Ruggs

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.

Karen Paradise Baranowski

karen.baranowski@intermountainmail.org
Stress in Pediatric Palliative and Hospice Care: Causes, Effects, and
Coping Strategies
Karens contribution to this issue of the newsletter is a detailed review of
some of the specific causes of stress when caring for children with life-limiting
illnesses, the effects stress has on care providers, and ways to cope with
such stress as individuals, teams, and organizations. Four tables in this
section identify key elements involved in each of these topics. The closing
sentences of this section draw attention to its major lessons: 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.
Kate Eastman
Alan Johnson
programdirector@jasonprogram.org
Johnson.alan@tchden.org
Unique Programs and Projects for Staff Support and Care
In this article, Kate and Alan report the results of their survey of PPC team
members from across the country about staff support and care. Their goal is
to highlight good work that is already being done in this area, as well as to
encourage others to draw upon the ideas offered by their respondents.
Respondents provide comments about: shared concerns, themes, and
approaches to staff support; regular, structured programs; singular and/or
sporadic activities; obstacles; and what is most needed. Perhaps the key
lessons that emerge from this section appear in its closing lines: Support
doesnt happen if no one notices that someone is having a difficult time.
Being attentive to one another is the first step in offering support. Kate and
Alan include contact information for their respondents so that readers of this
newsletter can be in touch with them directly if they wish to do so. Please
send to Kate and Alan information about unique programs and projects that
you are aware of in any area of PPC and well do our best to include that
information in a future newsletter.
Stacy Orloff
stacyorloff@thehospice.org
Humor as Part of Self Care in Pediatric Palliative and Hospice Care
As a contribution to self care, Stacy shares with us in this section some
favorite cartoons that may help to lighten our days when we are involved in
the often-difficult and challenging work of pediatric palliative care.
Sandy Macomber
smacomber@tidewell.org
Educational Opportunities and Resources

This section describes upcoming conferences, some books and articles, a

website, and a new tool called Come to Your Senses. Sandys goal in
compiling this section is to make readers aware of educational opportunities
and resources that might be of value in their work. As we all know, it can be
difficult to obtain information about such opportunities and resources, so we
invite you to submit to Sandy any information of this type that you would like
to share with other readers. Please help us help each othera fine example
of self care and staff support.
If you are not on our mailing list and received this newsletter from a friend or
some other source, please send an email message to CHIPPS2@NHPCO.org
requesting to be added to our mailing list.
We hope you have enjoyed reading this newsletter as much as we enjoyed
putting it together! Thank you for taking time to read this issue of our newsletter
and for any feedback that you can offer us. Providing pediatric palliative and
hospice care to children, adolescents, and their family members has made great
strides in recent years, even though it is certainly not always easy and still faces
many challenges and obstacles. Perhaps we can minimize or at least reduce
some of those challenges and obstacles through caring for ourselves and others
in constructive ways. We wish you all the best in your good work. Look for the
next issue of this newsletter in late summer.

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 lifes 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 selfcare 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
herebeauty, 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 crisisall 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 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.

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 selfefficacy 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 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.

Frequently Asked Questions: How Do We Support Ourselves?

Donna Armstrong
darmstrong@hospicebg.com
Caring for children in with life-threatening and terminal illnesses and their families
is emotional and intense to say the least. How does this work affect the staff?
How do they cope? Many hospice/palliative care staff working with children
report a high sense of satisfaction with this work. They value the relationships
they form with patients and families, as well as the ability to make a difference
during very difficult circumstances. Support from those who have shared the
same experience is also extremely helpful. Team members were surveyed to get
a look inside the emotional experience of the caregiver.

What are some sources of stress unique to those working in pediatric

palliative care?

The most obvious source of stress is the tragic circumstance of death of a

child.
Maintaining healthy boundaries. Lines can get blurred during emotionally
intense situations.
The higher level of needs and intense psychosocial issues related to
complicated grief.
The involvement of multiple providers (pediatric sub specialists, school
personnel, advocacy groups, etc).
Complex family dynamics due to a larger number of family members
(siblings, grandparents, aunts, uncles, etc.) involved in the patients care.

What do you find most meaningful about your work with pediatric palliative
care?

Listening to families discuss coping/love/commitment.

The opportunity to alleviate emotional distress in persons facing such
extremely disheartening circumstances.
Being able to make a difference in another family.
The chance to meet and encourage some incredible families who live
through unbelievable tragedies and struggles.
Knowing you are helping sick children and their families through a difficult
time.
The willingness of most of the families to open up to our team.
Assisting families in making memories.
The relationships with children and families are extraordinarily meaningful.
I grow and learn more about how to live from each experience.

How do you cope with repeated losses?

Prayer and personal reflection.

By focusing on the services provided that would have otherwise made a
sad situation more difficult.
The belief that we have made a difference.
Emotional support from friends/co-workers/team members.
Remembering the treasured memories they (the patients and families)
have left.
Spirituality.

How does your work affect you physically, emotionally, and spiritually?

I love this work. I feel we do make a difference.

Playing with my own grandchildren seems to balance sorrow.

It can be physically tiring, emotionally draining, and spiritually uplifting.
It makes you appreciate each day more.
Overall, it has given me a change in life view. There is a definite
awareness that life is a journey and it is important to make the most of
each day.
Work is draining on occasion. It can drain you physically, emotionally,
and spiritually if you dont take care of yourself.
It does drain me physically. Emotionally, my heart feels raw at times.
However, I am spiritually inspired and encouraged by my experiences at
Hospice.
This work can be overwhelming and exhausting. It is also incredibly
rewarding to share the journey with such special children and families.
It helps you keep your priorities straightdont sweat the small stuff
Some days, Im so exhausted I feel that when the day is over there will be
nothing left of me. But, most days, the rewards I receive are priceless.

Do you think it is appropriate to share your feelings with your patients and
families? To share a part of yourself?

Yes/No. It is a way to relay empathy.

Yes, but only if it will clearly be of encouragement or help to patients and
families.
It is not appropriate if it may be a worry or a burden to the patient or family.
I think it is inevitableyou get very close to them and they value your
opinions. But, it should be limited to your thoughts/feelings related to
patient status and plan of care.
Sharing of your feelings and relating empathy is a way to connect with
patients and families.

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?

No, it is not a burden. I appreciate that I have a better understanding of

such awareness.
Yes, it can be a burden, but it is freeing. I think about death daily; it
weighs heavily on me on some days. Other days it frees me to think
about how I really want to live my life.
It is not a burden. If you were oblivious to all the crises/tragedies, you
would be cold/unfeeling.
This awareness helps me to remember how fortunate I am, and to treat
these kids as the special kids they are.

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.

What does your agency do to support you?

Encouraging professional development through conferences and

educational materials.
Processing/debriefing with team and supervisor after a patients death.
Encouragement from supervisor to engage in self-care including taking
time off.
Consultation about difficult cases
Staff retreat

What other things do you do to take care of yourself?

Maintaining healthy boundaries.

Exercising.
Spending time with family/friends.
Engaging in personal hobbies (scrapbooking, reading, gardening, painting,
etc.)
Maintaining a healthy lifestyle (getting enough rest, avoiding caffeine,
drugs, alcohol, and eating properly).
Spirituality/religion.

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 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.

Table 1: Causes of Work Stress

Personal Variables
Interpersonal Variables
Personality characteristics (perfectionism)
Physicians failure to understand hospice
Over involvement with patients
Conflicts with colleagues
Identification with patients
Poor communication among staff
Self-esteem
Lack of supportive, collaborative workplace
relationships
Sense of mastery
Low team morale
Purpose in life
Disagreement about goals of care
Unrealistic expectations
Patients family dynamics
Feelings of inadequacy
Patient psychological issues
History of psychiatric illness
Poor relationship with patient/family
Emotional demands
Patient and family stressors (degree to which
Increased awareness of own losses,
patient/family accept illness and impending death, rate
vulnerabilities, and fear of own death
of patients deterioration)
Cumulative losses

Difficulty controlling patients pain/symptoms

Health Care System Variables
Difficulty predicting when death will occur
Paperwork
Not being present when the patient dies
Increased workload
Caring for a famous, extremely angry, or depressed
Understaffing
patient
Too many patients dying at one time

Secondary traumatic stress (knowledge of anothers

Decreased resources
suffering or trauma and trying to alleviate it)
Organization stresses (scheduling conflicts,

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

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
Psychological symptoms
Effects on Work
Changes in appetite
Frustration
Questions ability to provide
good care
Gastrointestinal
Feeling depleted and irritable
Avoiding patients and
disturbances
Anger
families
Somatic complaints
Depression

Disinterest in and concern

Headaches
Guilt
for patients
Exhaustion
Nervousness

Believe patients complaints

Clammy hands
Low self-esteem and selfto be manipulative
Increased motor activity
doubt

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

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 individuals 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 patients and familys needs by themselves (Childrens 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 overinvolvement, maintaining open communication with colleagues, and informing
peers of particular needs as they arise. Refer to table 3 for a summary of selfcare and coping strategies.

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

Table 3: Self-Care & Coping Strategies

Mental Health
Work Coping Strategies
Setting priorities
Professional boundaries
Saying no
Know why you chose a career
caring for terminally ill children
Letting go of conflict

Dont view death as a failure.

Keeping an open mind to
Reflect on rewards of work and
new ideas
moments where you made the
In-services and continuing
greatest difference
education
Speak with administrators for
Interests such as music or
appropriate resources, staffing, and
hobbies
workloads
Intuitional Health
Taking time off
Religious/spiritual practices
Working part-time
Consider personal beliefs
Reduce stressors
Meditation
Join professional organizations
Mind-body-spirit
Explore professional and personal
connections
goals
Relaxation
Journalexpress feelings about
Ethics committees
caring for patients
Create a sacred place where

Patient memory books

you can retreat to collect

Support from colleagues

yourself
Seek professional counseling
Create a small shrine
Define your role
Promote inner harmony
Avoid distancing from
Self awareness
patients/families

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.

Table 4: Agency Support

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

Informal, outside of work activities

EAP
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 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-

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.
Childrens 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), 914.
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 Website:
http://www.icccpo.org/articles/psychosocial/guidelines_burnout.html
Sumner, L.H. (2001). Staff support in pediatric hospice care. In A. ArmstrongDailey & S. Zarbock (Eds.), Hospice care for children (pp. 190-212). New York:
NY: Oxford.

Unique Programs and Projects for Staff Support and Care

Compiled by:
Kate Eastman
programdirector@jasonprogram.org

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

 There are scheduled and organized devotionals, blessings, and worship

services for staff and have prayer at nursing stations. Karen
There is a Remembrance Week sponsored by the Hospital Wide
Bereavement Committee and is dedicated to caring for ourselves while
remembering those who have touched our hearts. Kristen
The Art of Being a Healing Presence is a workshop of the fundamentals
of human interaction. It affirms the power of human interaction and how
another persons experience impacts us. It encourages staff to become
more aware of their internal responses, strengths, and limitations.
Kristen
Personal Death Awareness Training encourages participants to explore
their own loss histories and perceptions of death. Kristen
Self-care tools through the hospitals benefits program, such as: back-up
child care, focused health support and education, a wellness library,
financial counseling, a contract with Errand Solutions, discounted tickets
for entertainment/food, onsite bachelors/masters level classes, and
Spanish language classes. Kristen
The Butterfly Program is pediatric palliative care that lets the family know
someone is there for them as their child enters into the end of life. It offers
24-hour availability with medical director, nursing, social work, and a
chaplain both in the hospital and at home. Trish
ACT or Attending Caring Team initiatives are based on Jean Watsons
theory of Human Caring, and have incorporated Lundins FISH
philosophy. Bridget
Soul Food was started in the Cynthiana office of Hospice of the
Bluegrass, created by the team of chaplains. The purpose of this 5-10
minute activity is to encourage staff members and provide an outlet for
some of the stresses felt by working with a specialized, pediatric
population. Some examples of Soul Food provided are: poems, stories,
karaoke performances, pictures, newspaper articles, comics, guided
relaxation exercises, and announcements. The items are usually
humorous, although many are serious, encouraging, and reflective. Soul
Food is shared on a weekly basis among the staff members, at the
beginning of a staff meeting. It is widely participated in by all disciplines,
and received well by all staff. Donna
3. What are singular and/or sporadic activities? There are organizations
that have a Sunshine Committee, a group that supports staff through flowers,

cards, etc., when there is a birthday or a crisis or a personal concern that is

affecting the staff person.
A chaplain is encouraged to walk with the staff to take the deceased patient to
the morgue and occasionally a chaplain has performed a ritual of cleansing or
renewing or simply has prayed with the staff before another patient is admitted
into the room where a death has occurred.
It is imperative to have available someone who can cover for a coworker when
another coworker needs some time to reflect, renew, or rejuvenate after the
death of a patient. It would be helpful to make a more concerted effort to give
some well-earned time off and/or a retreat may give time for staff to spend time
together and focus on a topic of interest.
4. What are the obstacles? We need more staff, more time, more financial
support, more space to meet, and management support to provide support.
Even recognizing our own needs, it still is difficult to make it priority to give and
receive structured support. There is also resistance to being seen as needing
support. Yet the lack of funds prevents us from bringing in speakers and
changing ingrained behavior that says, Ill be just fine.
Time outs, mental health days, in-services, and retreats can offset the
expectations of being an Iron Maiden. It would also be great to get the doctors
on board in this approach of staff support and care!!
5. And what is most needed? It is helpful to hear from others as the above
information indicates. Get in touch with each other to pursue ideas and
questions, share programs and resources. Along with the programs and
sporadic activities we learned that generous listeningallowing us to vent
without being judged and to be recognized for our own needs is significant, as
well as having support systems that are available. An open and safe atmosphere
for sharing frustrations and grief leads to support when the context is nonthreatening.
Volunteers have also been good at offering staff support just by caring and
kindnesses. The gift of just being present is still a hallmark of support. It is
crucial for someone to effectively be the champion for the money, time, and
space for staff support. Along with this comes the specific needs of having
inpatient coverage during staff support (although if there is just a 30 minute
check in twice during each shift one staff will cover their coworker who attends
one session and then that staff will cover their coworker for the second session.)
And integrating cultural differences into this support may be an issue
for a future newsletter.
Support doesnt happen if no one notices that someone is having a difficult time.
Being attentive to one another is the first step in offering support.

************************************************************************
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

Humor as Part of Self Care in Pediatric Palliative and Hospice

Care
Stacy Orloff
stacyorloff@thehospice.org
It seems appropriate to include a section on humor when discussing self care. I
often ask myself when was the last time I laughed out loud at work? and all too
frequently the answer is too long ago and not long enough. I try to keep up with
the newspaper comics and my favorite cartoonists through their many books. I
have a cartoon file I keep handy and I do try to use some cartoons with power
point presentations and memos I might send. Sometimes I just pull the file out
and read them to myself (its almost as good as reading my chocolate cookbook
recipes when I need a chocolate fix but not quite!).
So, in honor of self care I am sharing a few of my favorite cartoons with you. I
must say it was very hard to choose which ones to include. Im thinking it might
be nice to include some of our favorite cartoons in subsequent newsletters.
What do you think? E-mail me and feel free to share your cartoons. Looking
forward to hearing from you. Hope these bring a smile to your face and some
laughter from your belly.

Educational Opportunities and Resources

Sandy Macomber
smacomber@tidewell.org

28th Annual Conference of the Association for Death Education and

Counseling (ADEC)
Grief and Loss: Wisdom and Insight, March 29 April 2 , 2006
Tampa Marriott Waterside Hotel & Marina, Tampa, Florida, USA
The ADEC Annual Conference presents a unique opportunity for interaction
between individuals concerned with psychosocial, clinical, and educational
aspects of death and loss. The Conference also provides a forum for the
exchange of information in death education, care of the dying, and bereavement
counseling and support.
Choose the ADEC Annual Conference in order to:

Learn about cutting-edge research and clinical work in the thanatology

field. Create a curriculum tailored to your individual needs and disciplinary
program. Participate in informal and formal networking opportunities.
Make the most of continuing education credits, the bookstore, and the
exhibition.

Contact ADEC at www.adec.org

Register online now using our Secure Online Registration form or download a
Registration Form (29kb PDF).
2006 End-of-Life Conference, April 18-19, 2006 in St. Cloud, MN
The annual conference is quickly approaching! Find the conference brochure,
physicians' brochure, and exhibitor and sponsor information (pdf format) on
the End-of-Life Conference Web page. Online registration is also available.
Contact: Frances Conklin, tel. 651-659-0423; fran@hospicemn.org
16th Annual Provincial Conference on Palliative and End-of-Life Care
Sponsored by: Humber/Ontario Palliative Care Association
April 23-25, 2006, Marriott Eaton Centre Hotel, Toronto, Ontario
Contact information: 416-674-2472; e-mail: corp@humber.ca; event web site:
www.palliativecare.humber.ca
For further information about this program, please contact:
Teresa Sottile, Conference Manager, Phone: 416-675-6622, Ext. 4559; Fax: 416675-0135; Email: teresa.sottile@humber.ca
National Hospice and Palliative Care Organization
7th Clinical Team Conference and Scientific Symposium
April 26-28, 2006, Town and Country Resort, San Diego, California

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.

We developed "Come to Your Senses" as we sought a way to bring staff back to

themselves and to their center in the midst of their work, and to help them make
sense of things. Concentrating on our senses of taste, hearing, touch, smell, and
sight brings us to the here and the now and focuses on tangible ways that we
can get back in touch with our selves in the cacophony of our daily work. We
added nonsense since we can also play, work, and live in situations that do not
make sense and yet we can still hang in there and be renewed rather than being
drained. It may be one way to make some sense out of nonsense.
All of our senses, even nonsense, can be avenues for rejuvenation!
Come to Your Senses: A program for rejuvenation and renewal
Order form
I would like to order ____ Notebook(s) of the program "Come to Your Senses"
Suggested donation: $55 for one Notebook, which includes 6 CDs and
guidelines.
$4.75 Postage (in the US)
Total $____ Enclosed
Please make checks payable to:
The Childrens Hospital Foundation
1245 E. Colfax Ave., Suite 400
Denver, CO 80218
Name: ____________________________________
Organization: ______________________________
Address: __________________________________
City: ______________________________________
State: ______________ Zip Code: ____________
Country: __________________________________
Phone: ____________________________________
E-mail: ____________________________________
For more information
Alan Johnson, Staff Chaplain, MDiv
The Childrens Hospital
303-864-5350; johnson.alan@tchden.org
Kelly West, BSN, RN
The Childrens Hospital
303-861-6511; kewest@tchden.org