Friday, November 16, 2012Tonight's picture was taken in November of 2004. Mattie was two and a half years old. As you can see Mattie was playing with one of his favorite things at the time.... Trains and particularly Thomas the Tank Engine trains. Got to love that cute smile!
Quote of the day: The great tragedy of the futility issue is the way most have written about it insist upon analyzing it as a division of power: the power of patient autonomy versus the power of medical knowledge and judgment. This approach fundamentally misses the real source of power in medicine. The power is in the RELATIONSHIP, the coming together of the afflicted and the healer, blending needs and goals with knowledge and skill to come to as good an outcome as may be possible. There can be no true healing without this relationship. The futility versus autonomy dichotomy pits caregiver against patient. Healing and caring is not a game where one side plays a trump card against the other to win. To resort to futility is to admit that the healing relationship has died or is at least severely impaired. ~ Hook, 1995
I had the opportunity to visit the HSC Pediatric Center (which used to be called the Hospital for Sick Children). Frankly I never knew this hospital even existed in the District of Columbia. So not only did I get to attend a half day training on palliative care, but I also was introduced to the resources within this care facility. HSC is in a way a transitional care facility for children who have been released from an intensive care unit, but who are not ready to go home yet. The hospital is staffed by physicians from Children's National Medical Center, however, the rest of the staff (nurses and therapists) are full time HSC employees. A certain percentage of the children being treated at HSC are wards of the state and many of the children have parents who rarely visit them for a host of reasons. So in essence the ethical challenges these care providers have are quite different from the challenges we provided the staff at Georgetown. In our case of course, we were forever present and demanded to be part of the care team. As Mattie's parents we ultimately determined the direction of Mattie's treatment. However the complexity of deciding treatment for a child, in which his/her guardian isn't present, is daunting from my perspective. I will leave it at that. For more information about HSC, visit: http://www.hscpediatriccenter.org/
At the half day seminar, I had the opportunity to hear from the following professionals:
Christy Torkildson, RN, Children's Project on Palliative & Hospice Services &
Carol Taylor, PhD, RN, Associate Professor, Georgetown University School of Nursing
Christy gave us a good overview of pediatric palliative care, breaking the myth that palliative care is synonymous with end of life care. Palliative care provides a teamed approach to help manage fear, nausea, and pain, in order to enhance the quality of a patient's life. The field is truly an infant, since it did not become a recognized part of medical care until 6 years ago. Along the way, I learned some interesting facts, such as 10% of medical and nursing textbooks used in the US cover the topic of death. Basically it is a VERY small to non-existent topic, and worse when hematology and oncology medical residents were assessed on their knowledge and training associated with end of life issues, only 20% of them felt prepared! Another shocking statistic, especially since childhood cancer is the number one disease killer in the United States.
The second speaker, Carol, presented some of the ethical dilemmas that healthcare providers face when caring for a terminally ill child. This conversation was absolutely fascinating to me. Carol is a gifted speaker, who has a way of capturing your attention. Everything she was saying resonated with me, so much so that I felt physically uneasy. What she was talking about wasn't only theoretical or clinical, for me it was REAL. Because unlike others in the room, I did have to make ethically challenging decisions each day regarding Mattie's care and particularly how he died. Carol discussed models of care with us and the notion that years ago medical doctors followed a paternalistic philosophy, meaning that the doctor knew all, and wasn't to be questioned. Thankfully that philosophy is out of vogue today, or at least it isn't popular. Mattie's first oncologist followed this old world view, which is most likely why we eventually asked to be reassigned to Kristen. Kristen followed a more collaborative model, naturally we considered her the medical expert, but she welcomed and sought out our input. Which was important, because in the end no one knew Mattie better than us!
Carol introduced us to Hook's quote tonight. I loved it as soon as I heard it because effective medical care can only be achieved when a RELATIONSHIP is established. Such a relationship builds trust, and trust is ultimately needed when allowing someone to medically treat your child. After Carol's presentation, she opened up the floor to questions. I raised my hand and gave the audience a parent perspective and reflection on what Carol presented. I do not claim that end of life decisions are easy by any stretch of the imagination. They are torture to make and to witness! But when you trust your health care providers and feel that you are part of a team deciding your child's best care interests, then making tough and life altering health care decisions is more doable.
Peter and I were the last presenters at the seminar. We spoke for over an hour and shared our perspective and candid stories about the impact of childhood cancer on Mattie and us. There are great lessons to be learned through stories and I believe we really brought issues alive for the group today. After our presentation was over, people spoke to me for another 90 minutes. I was approached by a medical doctor, a social work, nurses, and hospice workers.
As I told the group today, all of whom were passionate about palliative care, is that they were meeting our palliative care needs by giving us the opportunity to talk, share Mattie memories, and our stories. Palliative care does incorporate people like Peter and I under their umbrella, because we are parents who lost a child to cancer. The sad part, which they all understood, is that follow up care with bereaved families is basically non-existent, and we certainly know we can't talk about Mattie issues and our grief process in our daily existence. So having such outlets is crucial.
One of the audience members asked Peter and I if we sought counseling after Mattie's death. We both explained that we hadn't and why. It is ironic, given that I am a licensed mental health professional, but it is true, given our circumstances there are some things even counseling can't solve or address. I then explained to the audience that Mattie's social worker once asked me.... "Vicki, if you go for counseling, who are you going for? Yourself, or because others deem that you should?" This was a very powerful question, and the audience got it right away. Death and grief are NOT understood or appreciated in our society. Our society wants quick fixes, and unfortunately with the death of a child there are NO quick fixes, no happy pills, no HAPPY reality. Peter and I are on a constant quest to deal, cope, and manage the loss of Mattie.
I am worn out this week, but am taking a break tonight to go see my favorite ballet, Romeo and Juliet. Such diversions are needed after talking intensely this week about cancer and Mattie's battle and death.
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