Tonight's picture was taken in December of 2004. Mattie was two years old and as you can see his side kick, Patches the calico cat, was with him. Seeing this photo makes me chuckle because both Mattie and Patches were fascinated with the big Christmas packing boxes under the stair case. They both wanted to pull out the boxes and inspect inside. Mattie knew there were presents inside these boxes and his curiosity was getting the best of him. Patches on the other hand just loved boxes. They were her play toy. We miss this great duo in our home.
Quote of the day: If you do not tell the truth about yourself you cannot tell it about other people. ~ Virginia Woolf
Peter and I have been working over the course of the last month with a group of social workers on a publication about the Standards. These are not just any social workers, as they are leaders in their field and were integral in writing the 2015 Psychosocial Standards of Care. In reality, if Peter and I had insightful individuals like them during Mattie's care journey, I may have felt slightly different about the psychosocial care we did receive.
Having the opportunity to work with researchers and clinicians in this intense manner is actually refreshing because I can share thoughts and memories with them and they aren't going to run the other way. Instead, they seem to tell me that my insights help them think about things in a different light. My one issue that I flagged in the publication revolves around combining palliative care with end of life care.
So what is palliative care? Well I bet if you surveyed friends and family members, the number one thing they would associate palliative care with is dying. Yet this is the biggest health care myth. Palliative care is a multidisciplinary approach to specialized medical and nursing care for people with life-limiting illnesses. It focuses on providing relief from symptoms, pain, and physical and mental stress. The goal is to improve quality of life for both the child and the family. Although it is an important part of end-of-life care, it is not limited to that stage. It is appropriate at any age and at any stage in a serious illness and can be provided as the main goal of care or along with curative treatment.
I believe as we write this article we have a responsibility to break the myth. To enlighten those who read this article that palliative care is a service that should be provided to all children with cancer and their families starting at the time of diagnosis. After all, such a team approach can help manage pain better, stress, and enhance quality of life. If palliative care was provided right from the beginning as it is intended to be, then I believe the myth that this care is offered only at the end stages would dissipate. Right now most physicians get visibly anxious bringing up the words palliative care to their families because of the fear that they are implying the child is going to die. Therefore if palliative care becomes a standard of care from day one, this whole awkwardness would disappear and on top of that, it would provide more effective supportive care to the child and the family.
When I saw palliative care and end of life care discussed together in the article, I expressed my honest feelings about this, as I would prefer seeing end of life discussed with bereavement care. Children can receive palliative care while pursuing a 'cure.' Yet the type of palliative care services and support given to a child who is dying is going to be quite different from the child who is in treatment. Therefore from my perspective anything that relates to death should be discussed together. I am simplifying the issue for the blog, but I think I am making my point.
Another issue that arose through my dialogue today was memory items. It is quite standard that when a child is dying, the supportive care staff work with the child and the family to try to create legacy items or remembrances. I have major issues with this notion of legacy items. In fact, I remember after Mattie died, Peter and I were asked to speak at a conference about our loss. Before we spoke there was a presentation made by two social workers about the importance of creating legacy items for children and their families. They gave examples of the various items they helped children create, items that their parents can now turn to, to reflect upon and to help guide them as to how their children want to be remembered. All I know is after this presentation, Peter and I were both internally upset, angry, and ready to leave. When Mattie was dying we did not create legacy items with him. He was only 7 years old and the whole notion of talking to him about death, a concept that is hard enough for an adult to comprehend much less a child, wasn't happening. However, because we did not have these tangible items, this conference presentation made us feel guilty.... as if we did something wrong. That we weren't honoring Mattie's life the right way, since we certainly did not have any guide from him has to how he wanted to be remembered. It took me a long time to pull myself out of that guilt and tail spin, and I must admit that content from that session still whirls around in my mind today.
But here's the thing which I mentioned today. Legacy items are more meaningful when they are created when the child is alive and fighting. After all it is that courage, bravery, and spirit parents wish to remember. NOT a hand or footprint taken right after the child died. I have several hand and footprints that were created right in front of us the day Mattie died. To this day, I refuse to look at any of those prints. Those prints remind me of Mattie's harrowing 5 hour death! I don't want to remember him that way. So though these are intended to be legacy items, I don't use them in that way at all. Instead, Mattie's legacy items were all the items he created in the clinic or in his hospital room during his 14 month journey. Those items are important to me, but I can't tell you how many years it took for me to come to this understanding.
So what I am getting at is professionals need to rethink this whole notion of legacy items. Absolutely items are needed and cherished by parents, but why must these items be collected toward the end of life? Why not reframe the whole notion of legacy items to be items and mementos the child created throughout their journey. If the social workers who spoke at the conference's legacy session had chosen their words more carefully or thought outside the box, Peter and I would not have left feeling even worse than when we entered the room. Which is why I think it is important for research articles pertaining to the Standards be written taking into account the parent's voice! Thankfully we work with researchers and clinicians who take what we say to heart. I can't change everyone, but I know they are listening.
1 comment:
Vicki, I have so many thoughts whirling in my head right now after reading this very insightful blog.
Not sure, if any of these thoughts will come out in an orderly fashion but I will try. I am glad to know you & Peter know & work with a Team of Social Workers who seem to hear you. Since 1993, I have met one SW that I felt truly comprehended Pediatric Cancer, the need for truth & sensitivity. Now, of course, this is a raging generalization but it is my perspective and what was available to families with whom, I worked.
I do believe the benefits of Palliative Care should be part of the entire conversation with parents because there is an enormous misunderstanding of the support it could offer. Instead Palliative care/hospice are explained as one thing and they are very different at diagnosis. Very few, if any children & their families want to meet a new team of caregivers, if their child us dying. There is no familiarity, no memories between the caregiver, the child & family upon which to continue a relationship even if it has changed. This relationship is so important.
I feel strongly about legacy items but not items done when it is or could be the last of anything a child did. We did many legacy items in the Play Room. We did not call them this but as time proceeded for some families that is what they became. Only they were accomplished on a fun day in the out patient clinic. It did not lessen any parents grief, nor were they possibly wanting to look at it right after their child died. But I know from experience, that families mention the activity, how their child participated and when it was done. If legacy is a term to be used, then we need to be careful to create them during the fight, when so much courage is seen each day and parents can hear the laughter of their child doing the activity.
Each year at Thanksgiving, we drew a huge turkey that was put up on the wall. The turkey was featherless. However, the children's hands were painted like feathers, then cut, signed and hung on the turkey. Even the older patients participated, partly for the joy of having messy hands. Nevertheless, that was a fun day and after Thanksgiving, you can bet every parent took this handsprint home. We did many such items like this throughout the year. We made sand bottles. One child loved this activity because he was fighting brain cancer and some activities were harder. Avoiding frustration was key. He made bottle after bottle. A few years after, he died, his Mom contacted me to say those jars sat on her window sill. Everyday she could feel the pull of those jars and his joy in an activity, he could do for himself at least for awhile.
I am glad you & Peter have a good team with whom to work. People whose bring professional experience to the table but what youn& Peter bring us far more important for thevStandards to truly make their difference.
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