The Brochure on Dying
I had the conversation with my parent.
I look back at those decisions and although we did the best at the time, I could see how stress impaired our judgment and ability to questions the doctors on prognosis.
My mother was diagnosed with Stage IV pancreatic cancer in February 2008 and passed away in December 2008. My father suffered for 10 years with complications of open heart surgery and multiple comorbid conditions and passed away five weeks later in January 2009. During the last year of her life, my mother did not want to talk about the cancer or end of life care with us. I’m not sure if my father was in shock or denial or just wanted to go along with my mother’s wishes, but he did not wish to talk about end of life care either. I respect that she wanted to live every day to the fullest but we never really had this compassionate conversation to the extent of understanding their deepest wishes. During one hospitalization, we asked for a palliative care consult but the children were not involved. My father could not or would not share. Close to the end, my sister and I initiated the conversation again but it was difficult to do. My sister is a nurse and I am a respiratory therapist, and as gentle and kind and compassionate as we tried to be, we could still see in their eyes, their body language and the deep curling into their chairs how deeply painful it was on them. Finally my mother simply asked for a brochure on dying and said she would think about it and let us know. My sister and I searched the web for anything of use. With little other than nursing articles on the dying process, we finally wrote “The Brochure” that included physiologic and spiritual components – almost like a letter prayer. I’m not sure she ever read The Brochure, but we at least felt like we gave her what she wanted. She died a peaceful, well pain managed death under the kind, watchful care of a wonderful hospice nurse, Rose. My father’s end was a little more tramautic with an ICU stay, BIPAP, and aggressive therapy to get him discharged so he would not die in the hospital. I look back at those decisions and although we did the best at the time, I could see how stress impaired our judgment and ability to questions the doctors on prognosis. I chronicle this in my book but I encourage everyone to use these wonderful tools in the Starter Kit provided by the Conversation Project. We do great things with healthcare. We can also provide pain and suffering as a byproduct. I had a small conversation. I wish I had more but we did the best we could at the time and went with where they were at. Best wishes and words of encouragement to you on your Conversation.