Tonight's picture was taken in November of 2006. It is one of my favorite photos that I snapped of Peter and Mattie. They both had their Thanksgiving day colors on and if you knew Mattie then you understood that Peter had his arm wrapped around Mattie to get him to sit still for a photograph. Mattie was the ultimate multi-tasker and sitting still wasn't his forte. Yet despite moving around, he always was very clued in on happenings around him! Nothing got passed Mattie's ears or eye sight!!!
Quote of the day: Freedom is what we do with what is done to us. ~ Jean-Paul Sartre
I was invited to attend a Pediatric Palliative Care conference in Washington, DC today. I think palliative care is a very misunderstood form of care because most people associate it with end of life care. Meaning that the patient is dying. But actually this is NOT the case. Palliative care is specialized medical care for people with serious illness. It focuses on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. In an ideal world, every patient would be assigned a palliative care team that works besides one's doctors and nurses to try provide holistic and coordinated care. Without such a team, families are definitely left to heavily advocate for patient needs, and in many cases to also serve as the case manager of treatment. Why? Because in a hospital setting physicians and teams tend not to effectively communicate with the other. Yet they are all treating the same patient! Which is a major problem in medicine.
I got to hear about 90 minutes of case studies presented by nurses. These are nurses who are trying to innovatively and effectively integrate palliative care into pediatric medical practice. However, I was the only parent advocate in the room. I have to admit every conference I go to that involves childhood cancer, I am left pausing! Pausing because it is very different hearing this content as a parent who lost a child to cancer, versus hearing it as a clinician or researcher. I say this time and time again..... you can work in this field daily, but it is quite different than living it personally and watching your own child affected along with your family. As I heard many of the case/research studies today, I had all sorts of internal commentary mainly because what they think will be helpful, in my perspective is questionnable.
From left to right are:
Cecile, Debbie, Mary, and Ali.
Cecile and Debbie, I met when Mattie was in kindergarten with their children. Mary and Ali, I met through Mattie's preschool. Ali is my friend Margaret's daughter. Margaret was Mattie's first preschool teacher and became a very close friend of mine. Margaret died an untimely death two years ago, as she had a very aggressive battle with ALS. As I say to Ali all the time... she picked up with Mattie Miracle where her mom left off.
1 comment:
Vicki,
Mattie Miracle's candy donaters and sorters are beyond amazing. This yearly event is such a great idea. The number of people from many places astounding!!! The woman in Burke is going to drop off on Friday!
I agree, that even among health care people, the term palliative care in not understood as well as it should be understood. Parents are the best people to list the needs that exist yet I believe because the term has become so connected to end of life care, there are those who won't talk. I also believe from experience that many Physicians, nurses, other medical personnel see palliative care being accomplished by a different group of people than the original Drs. etc. who have been caring for the child and their family. This transfer of care creates much anxiety for the patient and family. What should be seamless in its ability to create a comfortable environment for the child and family is now a source of stress. I hope I am being clear. This is a topic, I feel strongly should be part of total care. However, it is introduced so late, many people are afraid of it. I would like to know more about the topics that were discussed today! Margy
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