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.
Nothing is more disorienting than saying goodbye to a loved one. Families may 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 loved one’s death and what was (or was not) within their control. Clear communication also offers an opportunity to demonstrate the respect professionals have for families.
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 loved one – loving or painful. Choosing words and actions wisely will support short- and long-term family coping.
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 families need.
Allow families to make decisions
Healthcare professionals experience painful human events daily, but for many families their loved one’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 families to make decisions during a time of emotional distress is important and give them some sense of control. Painful memories, especially those that include a loss of agency, can produce a secondary emotional injury and limit a family’s ability to find to cope well in the aftermath. Providers may have individual biases; if there is a conflict over care, an ethics consult may be helpful.
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 loved one’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 loved one experiences a prolonged medical event, simple suggestions on how others have coped or connecting these families to fellow families, 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.