I am Robin Kanarek, the President of the Foundation. I also happen to be a registered nurse. This is my first time blogging, so bear with me.
The goal of the KFF blog will be to share my thoughts and ideas on the direction of our foundation and, more importantly, the direction of palliative and supportive care. David, our beloved son, did not have this available to him when he died in 2000. There was very little psychological support available to him, or to us as a family. Research has demonstrated health care providers are extremely uncomfortable and not trained on how to discuss a patient's sense of mortality or fears of dying. This was the dilemma in which we were faced when David relapsed with leukemia in 1999 and required a stem cell transplant to save his life. In order for the transplant to take place, they had to destroy his immune system through body irradiation and infuse someone else's stem cells to generate a new immune system within his body. That donor was his 10 year old sister. After the transplantation, he was placed in strict isolation for 4 weeks. No one could go into his room without strict hand washing technique, gowning, gloving and wearing a hair net. He was very much isolated from the world. After about a week in strict isolation, David starting becoming irritable and angry at us and was very out of character for him. The health care providers said this was normal behavior for someone in isolation, but my husband and I sensed something else was really bothering him. We had a gut feeling that something was wrong and on a much deeper level. Being a nurse, I was well aware of the work of Dr. Elisabeth Kubler-Ross, the renowned psychiatrist and expert on death, dying and stages of grief, as well as, her work with dying children. Dying children do not usually share their fears of death with their parents to spare them from additional pain. David needed to have this discussion with a professional and no one wanted to have this discussion with him. Research has since documented that this is more common than one thinks--doctors and nurses have shared in research studies that they are not trained on how to have these difficult discussions and will shun away from having them. That was the case in our situation. No one volunteered to talk to David about what we surmised was his fear of dying. After much pleading, one of David's favorite doctors finally agreed to speak to him. Three hours later, the doctor emerged from David's room exhausted. It was a productive discussion. The doctor never divulged what was discussed but he did tell us David asked some tough philosophical questions. Surprisingly, afterwards, David appeared relaxed and even happy. I interpreted this as though the 'weight of the world was lifted from his shoulders'. This is why we started the Kanarek Family Foundation. We hope to educate all health care professionals on the importance of palliative care and how to provide emotional support to those patients with a life limiting disease. We also hope to promote the need for health providers to be trained in how to have these difficult conversations (aka 'advanced communication skills').
On this blog, I will share articles, quotes and and ask for your input on what you would like to see posted on this site. If you have questions, I will answer them to the best of my ability as a parent who lost a child to cancer, not as a health care professional. If you have a personal experience you would like to share, you are encouraged to please be a part of this blog.
This is another journey for me to heal, so let's see how it goes.