Friday, November 4, 2011Tonight's picture was taken in November of 2002. As you can clearly see, Mattie was looking directly at me and NOT the camera. I was so careful with Mattie when he was in the tub, I always had one hand on him at all times. The ironic part in all of this is I tried to protect him at every stage of his development, but despite my best efforts, some things were beyond my control.
Quote of the day: The deep pain that is felt at the death of every friendly soul arises from the feeling that there is in every individual something which is inexpressible, peculiar to him alone, and is, therefore, absolutely and irretrievably lost. ~ Arthur Schopenhauer
I attended The District of Columbia Pediatric Palliative Care Collaboration conference today. Literally I sat in one place for NINE hours and concentrated. So I am very tired tonight. I haven't attended a professional conference for many years now. The last one I attended was in July of 2008, a week before I took Mattie to the pediatrician and found out he had Osteosarcoma. For the longest time I associated attending conferences with getting cancer, since the time of Mattie's diagnosis will always remain vividly inside my head.
In the summer of 2011, I attended a reception sponsored by another cancer organization. While at the reception, I met a woman named Deborah. We had a lovely conversation and exchanged business cards. About a month ago, she emailed me and invited us to participate in her conference panel, to share our perspectives and insights with medical professionals on coping with the care of a terminally ill child.
The conference is a two day event and hosted by The District of Columbia Pediatric Palliative Care Collaboration. The Collaboration is a cooperative venture of two health care organizations in Washington, D.C. that seeks to provide comprehensive care to children and families facing life-threatening and life-limiting illnesses. The partners in this project have pooled resources to provide a full range of services to the community, including:
• Inpatient palliative care consultation
• Psychosocial support, counseling, and bereavement services
• Education and research in pediatric palliative care.
Not only did Deborah invite me to participate on the panel, but she invited me to attend the conference. So today, despite my apprehension associated with the content, I decided to go. I have heard a lot about the Collaboration and as a mental health professional I do need continuing education units to keep my license current. So this was actually a beneficial activity for me on multiple fronts.
As soon as I walked into the conference, I saw many familiar faces. Dr. Shad (the attending physician on call during the week Mattie died and a Mattie Miracle Board Member), Mattie's nurses, chaplain, social worker, and case manager were all in attendance. So it was like a mini reunion. One of the individuals who greeted us this morning got up on stage and asked the audience to raise their hands to indicate whether they had grandchildren. His next comment was...... "don't you just wish you could by-pass having children and go straight to grandchildren." With that the audience laughed, I on the other hand found that comment insulting. It clearly showed me that this person thought he was talking to a room of practitioners, not even taking into account that at least two of us in the room were parents who had lost a child. It took me a while to shelf that comment and not to let that influence my perspective on the rest of the event.
• Psychosocial support, counseling, and bereavement services
• Education and research in pediatric palliative care.
Not only did Deborah invite me to participate on the panel, but she invited me to attend the conference. So today, despite my apprehension associated with the content, I decided to go. I have heard a lot about the Collaboration and as a mental health professional I do need continuing education units to keep my license current. So this was actually a beneficial activity for me on multiple fronts.
As soon as I walked into the conference, I saw many familiar faces. Dr. Shad (the attending physician on call during the week Mattie died and a Mattie Miracle Board Member), Mattie's nurses, chaplain, social worker, and case manager were all in attendance. So it was like a mini reunion. One of the individuals who greeted us this morning got up on stage and asked the audience to raise their hands to indicate whether they had grandchildren. His next comment was...... "don't you just wish you could by-pass having children and go straight to grandchildren." With that the audience laughed, I on the other hand found that comment insulting. It clearly showed me that this person thought he was talking to a room of practitioners, not even taking into account that at least two of us in the room were parents who had lost a child. It took me a while to shelf that comment and not to let that influence my perspective on the rest of the event.
One of the speakers today was Dr. Shad. The lighting in the room made it challenging to take a decent picture. But she and her colleague gave a talk on.... The child with cancer: Oncologic and pediatric palliative care approach. Unlike what so many of think, palliative care is not synonymous with end of life care. Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. I had the opportunity to hear from several physicians today who specialize in palliative care, and they talked about the challenges they have convincing their colleagues of the benefits of this care. The main barrier to performing palliative care lies in the physician. Because most physicians are likely to say that they already do palliative care and therefore do not need training. After all, they assess and treat pain, provide support, and help with decision making. However, effective palliative care involves an integrated team approach of professionals (physician, chaplain, social worker, psychologist, psychiatrist, childlife, etc) and the family. It was an eye opening experience to see the turf wars and in-fighting within the medical profession.
Another presentation that caught my attention was on hope. Hope was defined as a wish or desire accompanied by the confident expectation of its fulfillment. This physician explained the importance of asking families, who are facing a terminal diagnosis, what their hope is for their child. He gave several examples. Naturally the most likely response patients' parents give is they want their child to get better and be cured. However, this physician doesn't stop there. He responds by saying, "yes I wish that too. But what else do you hope for?" What he is looking for is tangible things, such as "I want to be able to take my child home for a party," or "I do not want to see my child in pain." These are manageable hopes and expectations and things a medical team can actually grant. He went on to say that typically when the care team comes to a meeting and has to deliver bad news (such as a terminal condition), the tone in the room is somber. But when he uses this..... what do you hope for strategy, the tone in the room changes, and people feel more positive about what they can do and control. I listened to all of this, and though this makes perfect theoretical sense, my gut feeling was WHO IS HE DOING THIS FOR? The patient, the family, OR HIMSELF? I can state without a doubt that if Kristen came into a room and asked me..... Vicki what do you hope for with Mattie? I would have started screaming! It is a comment that I wouldn't have found helpful, but patronizing. A part of me feels that by asking a parent, what do you hope for, this allows the care team to feel a sense of hope and a sense of accomplishing something when literally there is nothing medically left to do.
Peter and I present tomorrow at the conference at 2pm, so think positive thoughts for us. It is challenging being in a room of clinicians, particularly when the topic isn't theoretical for me like it is for them, for me it is very real and has impacted my life.
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