Tonight's picture was taken in March of 2008. Four months before Mattie was diagnosed with cancer. Doesn't he look fine? It would have never crossed my mind how drastically our life was going to change! It was not unusual to find us on Roosevelt Island every weekend. Case in point with this photo! Mattie thrived in fresh air, and I grew accustomed to spending time outside regardless of the weather!
Quote of the day: Today's coronavirus update from Johns Hopkins.
- Number of people diagnosed with the virus: 28,321,796
- Number of people who died from the virus: 504,738
I came across this article today entitled, "Communication During Crisis: 5 Principles for Professionals." The crisis in this particular case, which is why it probably caught my attention, was end of life communications. I have to say that most hospitals do not handle this entire subject matter well.
Accordingly to the hospital Mattie was treated at, it is the physician who is required to initiate the talk to the patient/family about end of life issues. In our case that never happened. It was two of Mattie's nurses who had the courage to share the reality with me! Why is that? I frankly think there are many reasons for the hesitation. One is that physicians are healers, they aren't well versed in death and dying, much less helping patients and families navigate such a crisis. Two, in our case, I think all of Mattie's healthcare team were invested in his care and in supporting us. Therefore, I truly believe many of them were stunned that Mattie's cancer metastasized six weeks off of chemotherapy and they couldn't face end of life issues for Mattie any more than we could. Lastly, medical systems are programmed to do something! But with end of life issues the tasks and activities look slightly different. Medications are no longer given for curative purposes but for comfort and preserving dignity. A mind set change and one the healthcare system is just not set up (or even to have access to those trained in such care) to handle.
With that in mind, we have to start somewhere and the easiest way to show support during a crisis is with communication. The article mentioned how good communication about end of life issues can help family members with grief. Whereas, poor communication can do the exact opposite, potentially causing higher levels of depression, anxiety, and post traumatic stress in family members. How our doctors and health care providers talk to us during these life and death moments do have long term effects.
I certainly remember on the day that Mattie died, we asked one of the doctors what he had learned from Mattie? He was a big researcher, and given that Mattie's cancer case was so rare, we were hoping that Mattie's experience enlightened him as a scientist. To this day, I still remember what he said! In front of me, Peter, my parents and many other healthcare providers surrounding Mattie's dead body, he said he....learned nothing! NOTHING! How is that possible!???? I certainly learned a lot, even about the science and the horrific treatments which were ineffective for Mattie! So why didn't he? Well that may require a LONGER response, that goes beyond the scope of this particular blog posting. Simply stated it comes down to communication and compassion. They have to go together. His answer was indicative of his character and narcissistic personality, because even in Mattie's death, he couldn't look beyond himself and have the insight to realize that Mattie's family needed words of understanding, hope, and most importantly we needed to know that his cancer journey mattered and made a difference.
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