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 patient’s 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 don’t 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 straight—“don’t sweat the small stuff”
• Some days, I’m 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 inevitable—you 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 patient’s 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.