Advocating with Medical Staff

While most physicians and nurses know about Elisabeth Kubler-Ross’ five stages of grief in bereavement, they are most likely not familiar with chronic sorrow. At one time, unresolved grief was labeled as pathologic, or abnormal. Today, years of research shows that chronic sorrow is a normal response to an ongoing living loss.

Nurses are trained to view patients and their families in a holistic way. As a result, they may be more approachable than physicians when it comes to opening the door for meaningful dialogue about chronic sorrow and its effect on caregivers.

Remember that just a trip to the physician’s office can be a powerful trigger for a resurgence of your pain and sorrow. So, it is wise to have some strategies in place ahead of time. Here are some suggestions for dealing with appointments with medical professionals:

  • Open a dialogue with one or more nurses to encourage a team concept instead of a strained relationship.
  • Write down your concerns and questions ahead of time. Remember to use “pleasant persistence” during any discussion. Making demands will backfire causing physicians and nurses to tune you out. Pleasant persistence can help you avoid going home frustrated and feeling alone in your quest to get everything you believe your child needs.
  • Ask for some positive feedback. Let the nurse and/or doctor know that it is important for you to hear something positive about your child. Constant negative information can worsen the frequency and intensity of your grief. Celebrating even the smallest improvement can give you the hope you need to keep going, to keep being a caregiver. You may have to explain that you are not in denial, but are looking for something to hold onto. “Gloom and doom” is not helpful.
  • Bring someone with you who has positive energy. The last thing you need is another person who is negative or confrontational. Ask a friend, someone from church, or a family member who can be a supportive caregiver to you, not just your child.
  • Say a special prayer before you go into the doctor’s office. This could be a verse you know from childhood, or something you have found that assures you of God’s love and hope for your child and your family.
  • Ask for recommendations for resources or websites that may be helpful.
  • Ask if there is a local children’s hospital that has a resource room or library you can use to gather information.
  • Plan to do something fun after the doctor appointments. For example, go for ice cream or visit the public library or bookstore. Make sure it is fun for everyone, not just your child.