Tonight's picture was taken on April 4, 2009. Mattie celebrated his last birthday with us at the hospital. Despite being in the hospital, Mattie had a fun filled day and a party in which several of his friends attended. I remember that day so well, because Mattie was very excited to decorate the child life playroom for his party. There were signs, balloons, and party hats and streamers.
Quote of the day: The reality is that you will grieve forever. You will not ‘get over’ the loss of a loved one; you will learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again but you will never be the same. Nor should you be the same nor would you want to. ~ Elisabeth Kübler-Ross
I continue to be perplexed by medical doctors and their unwillingness to understand how psychosocial issues and concerns come into play when discussing one's physical health. Yesterday, my friend in cancer, who also lost her only child to the disease, text messaged me that she was headed to the emergency room with her husband. Her husband was in terrible pain, and fortunately she got him there just in time because he was having a massive heart attack. It is overwhelming, stressful, and scary when a loved one is sick, but then compound to this the experiences bereaved parents carry with them in every interaction. This impacts how we interact with medical staff and hospitals moving forward. In any case, in typical medical fashion, terms were thrown out left and right (as if we non-medical types understand this lexicon) and of course the infamous... do not resuscitate (DNR) papers were presented. Well if you are not frightened to begin with being in pain and uncertain as to your prognosis, then a DNR will really shake some reality into the picture.
What I am suggesting is that terminology and a DNR can still be presented but in a more effective manner, that enables the patient and family to know they are part of the process. NOT just an obstacle in the process that prevents treatment from occurring right away until papers are signed. What truly upset me in this story (putting aside the complete lack of affect and disregard for this family psychosocially), is that my friend explained to the ER doctor that she and her husband lost their only child to cancer and they feel the stress associated with such a profound loss plays a role in this. Don't you know the doctor dismissed this notion and did not want to hear more.
As soon as my friend told me this, I naturally went to my two favorite psychosocial articles and sent them to her. Both of these articles mention that.... Chronic grief has been associated with many psychological (e.g., depression and anxiety) and somatic symptoms (e.g., loss of appetite, sleep disturbances, fatigue), including increased mortality risk (Alam et al., 2012; Li et al, 2003). She plans on sharing these articles with the doctors! Isn't it amazing that while having to help your husband through a heart attack, you also have to educate the medical community?! Which is why in my perspective the whole curriculum for medical education needs to be re-evaluated because they are clearly missing the other part of the equation that impacts health care..... the psychological, social, and emotional aspects of being human.
As I say often, bereaved parents are walking case studies. So many of us deal with chronic and long term health issues. Issues that were not apparent in our lives prior to our child dying. So in essence the cancer battle maybe over, but the psychosocial effects CONTINUE indefinitely. Here are some excerpts from the two articles in question that directly pertain to what I was sharing with my friend.......................................
Alam et al., 2012 in the journal, Death Studies
The death of a child can be a devastating experience for parents. This
event symbolizes the reversal of the natural order of life and erases the
dreams and hopes that parents have for their child. Parental bereavement has been found to elicit more intense grief reactions than
that of one’s spouse or parent (Sanders, 1979). Parents may continue to grieve
long after the death of their child
(Kreichbergs, Valdimarsdottir, Onelov, Henter, & Steineck, 2004; Wing,
Clance, Burge-Callaway, & Armistead, 2001). Such chronic grief has been
associated with many clinical psychological (i.e., depression, anxiety) and somatic symptoms (i.e., loss of appetite, sleep
disturbances, fatigue), including increased mortality risk (Li, Precht,
Mortensen, & Olsen, 2003; Wing et al., 2001; Znoj & Keller, 2002).
Li et al., 2003 in the journal, Lancet
Stressful life events can affect the sympathetic nervous system, the
hypothalamic-pituitary-adrenal axis, the neuroendocrine systems, and the immune
systems, which could result in various diseases. Psychological stress could
also raise the risk of unnatural death. It might, furthermore, lead to
more adverse lifestyle behaviors, which could in turn affect mortality.
Our data indicate that the death of a child is associated with an
overall increased mortality in mothers, and a slightly increased early
mortality from unnatural causes in fathers. Psychological stress after the
death of a child could affect health outcomes in several ways. The most intense
reactions are often seen shortly after the bereavement, with a short term peak
of mortality from unnatural causes. In the long term, various pathophysiological changes related to stress could
increase susceptibility to infectious diseases, affect the risk and prognosis
of cancer, and lead to diseases of the cardiovascular systems. Stress also
affects lifestyle—eg, by increasing smoking and alcohol intake, altering
dietary patterns, and reducing physical activity—which could increase the risk
of mortality from both natural and unnatural causes. Individual
differences in the ability to cope with stress are substantial, and
mothers generally have more health problems than fathers after the death of a child, as indicated by our findings and those of other studies. Our results showed that, overall, the death of a child aged younger than 18
years increased maternal mortality from all causes, but especially unnatural
ones.
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