Last Friday I had the opportunity to meet a palliative care patient in the community. She was a soft-spoken elderly woman suffering from metastatic colon cancer. Her story was heartbreaking and made me think more deeply about how I will live my life to its fullest. The most disappointing surprise of that experience was that the visit ran as I expected it to.
Prior to the visit, I thought that my assumptions that the visit would be disheartening and unsatisfying, and that after the visit I'd be proven wrong. Unfortunately, the experience I shared with my classmates furthered my original thoughts. I am not sure if it was just a bad day for her or not, but I really looked forward to having my preconceptions disproved. Unfortunately, the experience was sad, demotivating and made it very difficult for me to see myself working with patients like this on a daily basis. Having said this, I do think that overall it was a worthy experience and I will not let it be my last.
The questions that it raised in my mind were personal ones. My grandfather has been bedridden for a year and a half, and he had a stroke that week that sent him to hospital. Since I was unable to see him due to school, I spent most of my time comparing his situation to the one of this patient’s, and wondering how the palliation process is different from one person to the next. I felt extremely sorry for the woman, who cried on the first question we asked her. It was sad to hear a life story filled with tragedy. She was upset that her sister was unwilling to accept the fact that her mother was dying, and was crushed at the thought of not being able to see her grandchildren grow. This was very emotional for me, and made it difficult for me to ask questions, as I didn’t want to bring up such obviously sensitive topics with her.
Coming in I was already sad and mentally preparing myself for the similarities I would be drawing between the patient and my grandfather, and following the visit I felt worse. One large misconception that I had going into the visit was that all palliative care patients look unwell and are unable to perform many ADLs/IADLs. This woman greeted us at the door, had an immaculate apartment that she cared for herself, gathered groceries with her car and cooked her own meals, with the forethought to freeze extra food for the days she was on chemotherapy and would be too weak to cook. I was amazed by this, and I suppose in some way it did dispel some of my original thoughts that the visit would be depressing -- listening to how active she was was inspiring. The medical system had enhanced her dignity by affording her the opportunity to spend minimal time at hospitals and regain most of her independence. She had a nurse visit once a day to deliver injections, and visited the hospital only for assessments and chemotherapy, which is relatively infrequently.
I believe that society tend to try to ignore the concept of death and dying, since it makes many people feel uncomfortable. Our patient discussed how it was difficult to talk with many people about her situation, and this in turn made it difficult for her to feel comfortable with the concept of death. If we lived in a society that was more willing to openly discuss and consider end-of-life, this would likely make her feel more dignified and worthy.
Although I began this reflection with mainly negative thoughts, after further consideration I do think that it was an invaluable experience that wasn’t nearly as negative as expected. I will leave my original thoughts at the beginning of this reflection for comparison. What I took away from this experience is that discussion of death, dying and end of life care is extremely difficult and uncomfortable for many, but this doesn't change the fact that it must be dealt with and is an important part of life. If we can learn to be more accepting as a society, to take the time to listen and feel what others are feeling, maybe we can help change someone’s negative outlook on how the rest of their life will turn out. In the future I hope that I become more willing myself to discuss these difficult subjects, and to make a positive impact on individuals who are struggling with death or disease in the way they approach the idea. By being mindful about how different people approach the subject of death, and not imparting my views, I hope to be able to listen to the needs of the patient and adjust my values and behaviors to coincide with theirs such that I can care for them in the best way possible. I hope that in the future I will be able to take into account the individual behind the disease, their life stories and their personal experiences into formulating a healthcare strategy that will best suit their needs and give the highest quality of life possible. By dispelling common assumptions and preconceptions about what palliative care means, I hope to be able to make a positive change in my colleagues, patients and family members’ feelings toward palliative care and palliative care patients so as to eliminate discrimination due to ignorance.
- Robin R. (Queen's University)