I have spent the majority of my hospice volunteering experience with a woman in her late 90s with dementia, who I will refer to as Judy. Judy reminds me of my grandmother: They’re both sociable, talkative, strong-willed women who have been changed by dementia. While dementia may seem less harmful than other conditions, in that individuals may not be aware of their dementia or its effects, I do not believe this is the case. With both Judy and my grandmother, you can see their fear when they are not able to communicate with someone, or their pure sadness when they relive a family member’s death that occurred decades ago. Nonetheless, the hardships of being a caregiver for my grandmother have prepared me to make sure Judy feels safe, comforted, and as happy as she can in her situation. These are the same goals that should become the forefront of medicine, especially palliative care.
In Judy’s mind she is completely coherent; however, to others, her words are inaudible word salad. Therefore, eye contact and body language are extremely important. We’ve learned to converse using pictures, especially through her photo album she keeps in her room. I have learned so much about Judy’s family and hobbies without ever having a clear verbal conversation. I often tell her about my day, tell her how she reminds me of my grandmother, and I know she understands. After experiencing the painful fear and confusion dementia patients suffer from, my priority as a volunteer is to make sure Judy feels safe and loved. For instance, I can tell when she is in pain, and at times there’s nothing more I can do than rub her back and hold her hand to ease her pain. On my most recent visit, Judy was crying when I saw her, which I attributed to her daughter visiting early that morning. I made eye contact, smiled and hugged her, and immediately gave her favorite famous movie star folder. We conversed about the stars through facial expressions and some words, and that quickly put her in a good mood.
Over my winter break, I read Atul Gawande’s book, Being Mortal, in which he discussed hospice and assisted living. He mentioned that continuous social interaction, whether with animals, children, or other residents, appeared to improve patients’ health and state of mind more than increased medication could. I wish this practice were used in Judy’s hospice facility. I see her sitting alone in her room, and it breaks my heart. Therefore, I try to take her into spaces where other residents are. Even if the residents do not talk to each other, at least they are not physically isolated.
This experience has allowed me to become immersed in the true intent of the medical field: comforting those who are ill. Comforting does not always translate into increased medication or undergoing more procedures. In fact, end-of-life patients receiving aggressive treatment do not live longer than hospice patients (Khullar, 2017). Comforting means alleviating pain, and often social interaction can be the best medicine. Dr. Puri touches on this point, “By accepting my patients’ circumstances, rather than fixating on their inherent tragedy, I could focus instead on changing what I could…”(Puri, 2019). Especially when it comes to the end of one’s life, achieving the highest quality of life attainable should be the priority, as the majority of patients prefer to avoid hospitalization at this time (Khullar, 2017).
Through this experience, I have a much stronger appreciation of palliative care and regard it as one of the most important fields of medicine. My experiences with Judy and my grandmother have conveyed that despite our different cultures and backgrounds, the best medicine is a kind face and someone to hold their hand. They value compassion, and we need to extend this compassion to end-of-life care and realize that medicine does not always have to exhaust all options. We must be especially compassionate to patients’ wishes concerning their end of life. This is the message I hope to convey to medical schools – that compassionate care does not always have to translate to aggressive care.