Tonight's picture was taken on March 7, 2007. This photo always makes me laugh. For many reasons. First it is March! One would hope that given the time of year, Spring weather would be apparent, but of course as is typical in DC, March is very changeable and cold. So that year it snowed! Mattie loved the snow and was out on our deck and collected all that he could find to build snow castles. After the castles were constructed Mattie topped them off with a stone decoration. This was actually the same process he followed with his sand castles at the beach. When I saw the similarities that day it made me laugh!
Quote of the day: Healthy citizens are the greatest asset any country can have. ~ Winston S. Churchill
Our head psychosocial researcher, Lori, sent me an article in the New York Times today entitled, "Teenagers Face Early Death, On Their Terms." The Times interviewed her about teenagers dying and how to assist them with their advanced care needs and wishes. The reason they are interviewing Lori, besides her clinical experience, is because she developed a tool called "Voicing my Choices" that is a booklet designed to help teens and young adults talk with family members about their feelings and wishes on sensitive and hard to discuss matters such as end of life care, funeral arrangements, how they want to be remembered, and if they are incapacitated and unable to speak -- how they want visits to be carried out when loved ones are present. Voicing my Choices is a free tool that can be ordered at: https://www.agingwithdignity.org/voicing-my-choices.php.
If you should look at the NY Times article below you will find that it has a companion video to it that highlights one of the young adults discussed in the article, Karly. Karly is 20 years old and has a genetic disease, the same disease that apparently killed her older sister. The article discusses how Voicing my Choices has helped Karly. But that is NOT why I am attaching this article to the blog. I am attaching the article to the blog because Karly and her family's story deeply touched me today. The video, I thought, was meaningful. Karly has every right to be balled up in a corner, anxious, or hating the world. Yet she is NONE of these things. Actually no one in her family is this way. They seem to tackle the world head on, which has been my experience with many families who have to face adversity. You find inner strengths you never knew you had. From the outside looking in, we are in awe. But from my experience while going through something of this magnitude, you can think of NO OTHER WAY to live your life that will be productive for yourself or your child. So I deeply related to Karly's mother.
Yet when I observe Karly, it does make you appreciate the fact that you are healthy. When I hear children and teens around me wining about nonsense I get very upset. I get upset not only for my loss, but for children and teenagers like Karly. Young people like Karly really do not know what a healthy and normal life looks like and worse they live in fear that they will die and what will this mean for themselves and their families?
As I told Lori today, I think Voicing my Choices is certainly needed for teens and young adults but the component that needs to be added is for the physicians! Physicians are very hesitant to talk about bad news and death and dying with patients and family members. Naturally physicians are healers and therefore their goal is to prolong and save lives. I have to imagine though in the training of our physicians in this Country we are doing them a great disservice because in the process of all their analytical skills we have failed to teach them the art of relating to patients as human beings and therefore confronting the realities of the human condition. Which is death. Medicine is not all powerful. In fact, so much about science is still unknown and if you doubt that, just talk to any oncology patient.
Recently when I was at the Institute of Medicine workshop in Washington, DC, I was asked how I found out about Mattie's terminal condition and that he was dying. Mind you I DIDN'T bring it up in such a public forum. But since I was asked, I tried to convey the response in the most appropriate manner. Peter and I were NEVER told by a physician that Mattie was dying. In fact, we were all actively treating Mattie and doing all sorts of invasive procedures on him until one day, Debbi, Mattie's sedation nurse angel saw me outside in the hospital rose garden. It was there that Debbi told me that Mattie was dying and that I had the choice to decide what his death was going to look like. I was BEYOND stunned that day, I can remember it vividly. I knew Mattie's cancer had metastasized, since scans revealed that, but the doctors never told me that Mattie was dying within days! Of course by the time I put two and two together, Mattie could no longer speak. He needed to be knocked out on pain medications. We never had an opportunity to have a meaningful dialogue with Mattie about his wishes or to say good-bye.
In any case, my candor about the fact that our physicians did not reveal that Mattie was dying clearly upset one doctor in the audience at the workshop. He later spoke up and wanted the audience to know that it is very hard for doctors to lose their patients and to also have to tell families that children are dying. Mainly he was implying that doctors care and get connected to their patients and was hoping that one of the panel professionals would have highlighted this and also discussed the need to support physicians. Understand the workshop was about the qualify of life issues of children and their families who are dealing with childhood cancer. Though I get his perspective, the support and training he needs comes from another conference and outlet in my opinion. But it speaks to the bigger problem which so many of us who care for seriously ill children (or anyone seriously ill for that matter) face, we are dealing with a medical system which can't handle failure. Failure is assessed as the medicine not working. When this occurs you can see the chaos begin to unfold in the professionals around you.
As the article points out discussing dying is a hard topic because confronting the issue for families is painful but it may also signal that hope is lost. "Families don't want to face it (dying)" .....that is the excuse doctors and mental health professionals espouse in many cases about families, but I would suggest that this issue goes two ways. I am not sure professionals are comfortable approaching families about dying either! It isn't ONLY the families who have the issue! I am not sure any of us wanted to face Mattie's death. But I do know that when it came down to the last days when he was actually dying, I wish I knew that was happening before he became unconscious and unable to process what we were saying in a way that was discernible to us.
Teenagers Face Early Death, On Their Terms
http://well.blogs.nytimes.com//2015/03/28/teen-advance-directive-end-of-life-care/
1 comment:
Thank you for posting this. I sent it out to the Haven grief supporters and posted it up on LinkedIn as well. This discussion is critical between doctor and patient as well as parents.
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