Whether in the emergency room, in labor and delivery, in the oncology ward or in surgery, each death takes a toll on both families and healthcare providers alike. 

In the throes of chaotic, unpredictable circumstances, healthcare professionals are faced with complicated decision-making, such as whether to allow a family to hold or touch a child who died suddenly before a police investigation determines cause of death. Given their importance, doctors and nurses and other healthcare professionals need top-quality training and support.

Five Guiding Principles

These five guiding principles can help health professionals support families during this difficult time:

1. Communicate clearly. Nothing is more disorienting than saying goodbye to a child. Parents struggle to make sense of what happened. Using clear words to describe a disease or cause of death may help the family understand what led to their child’s death and what was (or was not) within their control. Clear communication also offers an opportunity to demonstrate the respect professionals have for them as parents.

2. Understand hallmark memories. Every interaction medical staff has with a family can become a hallmark memory that defines how they remember their last moments with their child – loving or painful. Choosing words and actions wisely will support long-term family coping.

3. Listen patiently and quietly. Understanding cultural differences and respecting an individual’s experience can be difficult at times. Listening and acknowledging the tremendous pain and difficult decisions families face will help you determine what parents and families need.

4. Allow parents to parent. Healthcare professionals experience painful human events daily, but for many families a child’s death may be their first or only significant medical crisis. Families should be allowed to govern care, even if they make decisions with which providers might not agree. Allowing parents to parent during a time of emotional distress is important. Painful memories, especially those that include a loss of agency, can produce a secondary emotional injury and limit parents’ ability to find a “new normal” after their child’s passing. Providers can have individual biases; if there is a conflict with parents over care, an ethics consult may be helpful.

5. Generate legacy and memories. It is important to allow families to be families, and providers can play an important role in memory-making. Help families create keepsakes such as photos or videos. Providers might also suggest that families not wash all the child’s clothes at one time, as they reach the end of their lives, to help them hang onto and cherish all that they can.

Finally, healthcare providers can be at risk of developing post-traumatic stress. Being a caregiver and providing support can pose significant health risks to you.  Healthcare providers should seek many forms of support and self-care to cope with the continual exposure to stress, death and trauma. Taking care of yourself is fundamental to serving yourself and your community.

Prolonged Illness or Disease

For those families whose children experience a prolonged medical event, simple suggestions on how others have coped or connecting these families to fellow parents, as Akron Children’s Hospital does through its Parent Advisory Program, may be helpful. Families facing a protracted event may also seek to establish a nonprofit to solicit donations to support medical bills or institutional stays. Facilitating engagement with groups such Make-A-Wish Foundation or the Ronald McDonald House may help.

Parents may experience an evolution in their role as guardian as their child’s condition deteriorates and they recognize death is a conceivable outcome. Many parents understand when medical interventions no longer offer relief or when their own hope has run out. Giving permission to allow their child to die is the most wrenching parental decision. Helping parents prepare to parent during this time can be helpful in their long-term coping.


Other Resources

American Academy of Pediatrics

Supporting the Family After the Death of a Child – Clinical Report
After a Loved One Dies — How Children Grieve and Parents and Other Can Support Them
Bereavement Fact Sheet

National Institute of Nursing Research

Palliative Care: Conversations Matter

Self-care and stress management

It is never easy to lose a patient, and another case is often right behind the last one. Taking time for yourself and your team to deal with a death and its implications is important to long-term health. Finding consistent and frequent ways for your team to cope with stress and secondary trauma will establish good long-term coping, deepen team cohesion, and improve overall care in your practice.

Self-care resources

Compassion Fatigue: The Toll of Being a Care Provider – Association of American Medical Colleges
Basics of Trauma-Informed Care – Healthcare Toolbox
You Know You Should Take Care of Yourself; Learn How to Make It Work – American Academy of Pediatrics
Secondary-traumatic Stress – Reflections On Nursing Leadership
Compassion Fatigue: Nurses Need To Take Care of Themselves As Well As Others – RN Central

Actions and words spoken before, during and after a death impacts a family’s ability to cope in the short- and long-term.


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