Monday, September 14, 2020

Monday, September 14, 2020

Tonight's picture was taken in September of 2007. It was Mattie's first day of kindergarten. I am not sure who was more nervous! It was a toss up. Mattie wanted to go back to his preschool, and the transition to an elementary school, was challenging. Yet Mattie got up early (which wasn't a problem for him), got into his school uniform, and complied with my request for a photo! I honestly thought I would have MANY years of first day school photos. I would never have guessed that this would be my first and only. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 6,545,948
• number of people who died from the virus: 194,367

It is not unusual for me to receive email questions from the childhood cancer advocacy community and from families themselves. The questions always revolve around psychosocial concerns, treatment, and research. Today's question was about children with cancer who are dying. Specifically how and when should parents tell their children they are dying. It is an excellent question and believe it or not, even in 2020, there are mixed thoughts about this topic. Mixed in the sense that there are parents who feel this information should be kept from the child and then the opposite, parents who feel children should be told. 

Parents maybe all over the map on this question, but the psychosocial community no longer is! The trending thought is children should be told, in a developmentally appropriate manner. Frankly whether I read the research or not, I know first hand from Mattie (my 7 year old), that children are perceptive and they know OUTRIGHT that something is very wrong and they are sick enough to die. They may not understand the concept of death, like you or me, but they get the concept of a separation and the anxiety that can cause. In fact, Mattie told Peter and I that he was dying! I am not sure we processed that feeling, as our goal was always to fight for Mattie and keep him alive. So the notion of him dying, wasn't something we could face, even when our 7 year old asked us! 

I provided the person who emailed me with these four resources:

1. The Gift of Gerbert’s Feather’s – to help parents open these conversations. (audio version now free): https://www.maginationpressfamily.org/stress-anxiety-in-kids/the-gift-of-gerberts-feathers/?utm_campaign=apa_publishing&utm_medium=direct_social_media&utm_source=books&utm_content=magination_mpfamily_storytime_09102020&utm_term=twitter
2. When your child is sick by Joanna Breyer (particularly chapter 22): https://www.penguinrandomhouse.com/books/318757/when-your-child-is-sick-by-joanna-breyer-phd/
3. The Private Worlds of Dying Children by Myra Bluebond-Langer (landmark work from the 1970s) https://www.amazon.com/Private-Worlds-Dying-Children/dp/0691028206
4. Dying Child’s Awareness of Death by John Spinetta 

Numbers 3 and 4 above, are actually landmark studies in the field addressing this very question! It was previously thought that children did not experience "death anxiety" given their facial expressions and mannerisms. However, this was proven to be short sighted and incorrect, as it was found that children as young as 6 years had a very real awareness of the seriousness of their illness. 

It was a very interesting question posed to me today and I was happy I could provide resources. As I strongly believe children, regardless of their age, are aware of what is happening to them and within them! Which is why top notch treatment teams LISTEN to their children patients and the parents who know them so well. 

The Dying Child's Awareness of Death: A review by John Spinetta

Two benchmark studies discussed within his article:

ONE

Waechter (1968, 1971) used a set of eight pictures, requesting stories about them from each of the 64 children in the study. She used four matched groups from the controversial 6-10 age range (fatally ill children, children with nonfatal chronic illnesses, children with brief illnesses, and normal, non-hospitalized children). Among the fatally ill children in her study, Waechter found a higher number of overtly expressed death themes and concerns than of mutilation or separation concerns and, compared with the other groups, a greater degree of concern with threat to and intrusion into their bodies and interference with normal body functioning. Waechter's findings pointed to the very strong possibility that children aged 6-10 with a fatal prognosis not only are aware that they are dying, but can express that awareness by actual use of words relating to death.

TWO

In the study (Spinetta et al., 1973), 25 children aged 6-10 with a diagnosis of leukemia were matched in age, sex, race, grade in school, seriousness of condition, and amount of medical intervention with 25 children with chronic (but nonfatal) illnesses, such as diabetes, asthma, congenital heart disease, and renal problems. The children were asked to tell stories about each of four pictures of hospital scenes and about each of four figurines (nurse, doctor, mother, and father) placed in a three dimensional replica of a hospital room. Each child was also given a brief anxiety questionnaire sorting out hospital anxiety from home anxiety, based on the Children's State-Trait Anxiety Inventory. The results offered strong support for the hypothesis that fatally ill children show significantly greater awareness of their hospital experience than chronically ill children. The leukemic children related significantly more stories that showed preoccupation with threat to and intrusion into their bodies and interference with their body functioning than did the chronically ill children, both in the stories relating to the pictures and the stories told about the placed figurines. The children with fatal illness also expressed more hospital-related and non-hospital-related anxiety than did the chronically ill children. If, as the parents of the 25 leukemic children maintained, their child did not know that his illness was fatal and if the chronically ill children generally received the same number and duration of hospital-related treatments, there should have been little or no difference between the scores of the fatally ill children and the scores of the chronically ill. Yet there was a significant difference in the level of anxiety that was present from the very first admission to the hospital. It seems that despite efforts to keep the child with a fatal illness from becoming aware of the prognosis, he somehow picks up a sense that his illness is very serious and very threatening. The study established the fact that the fatally ill child is aware that his is no ordinary illness.