End-of-life Care Does Not Look the Same for Everyone

Going into this Hospice experience I lacked confidence and felt uncertainty over my ability to provide patients comfort and then deal with their looming death on my own. Every visit I have with my patient – “Rebecca” – has allowed me to realize that my shortcomings were only a reflection of preconceived notions. Going in I was told “Rebecca” had memory loss thus I took all the training we received via this program and prepared for a visit full of sitting and large periods of silence. From the very first visit “Rebecca” loved to ramble about her family, everything she was learning, and would even joke about the rebellious acts she performed as a child. I soon realized that when it came to hospice patients, cognitive decline or lack of mobility did not equate to a lack of personality or desire to live. Despite her decline “Rebecca” is high-spirited, independent, and has a witty sense of humor. My other patient, “Emma”, is not as open and has blurted out offensive words at me. With some patience and careful probing of questions, I can get her to speak to me or smile even if just for a minute or two. The contrasting experiences serve as a reminder that no two patients respond the same but all of them are worthy of the effort to give them the socialization they desire. Providing comfort will not always be the traditional type of coddling we are accustomed to and that simply means I have to be creative about my approach. As a hospice volunteer, I recognize that regardless of the treatment my patients give me they are going through a vulnerable period in their life where they must work even harder to continue having autonomy over their lives. For this reason, I do not take anything they say to me personally and refuse to give my patients anything less than 100% of my attention and effort.
My confidence in my abilities has grown in acknowledging that neither the patient nor I are prepared for our interactions. Hospice care is collaborative thus we must work together and let time naturally dictate the course of interaction. Often, it is the spontaneous conversations or games we play that prove to be the most rewarding. After this experience, I feel even more passionate about entering the medical field. We need more compassionate providers who are willing to move outside their comfort zone, recognize their weaknesses, and become the provider that their patient needs. For me, a large weakness was discussing death. Death was stigmatized during my upbringing resulting in fear and discomfort whenever I had to talk about it. Through the many TED talks, articles, conversations with other hospice volunteers, and those with my patients I have grown to accept death as a natural stage in life. Death will spontaneously come and the best we can do is prepare for it. Volunteering has allowed me to see firsthand how age changes us and that life must be celebrated. Not only was I able to provide some comfort for my patients but they did the same for me in allowing me to be a part of their journey. Medicine and emotions are often seen as needing to be separate but in reality, having a balance between the two is necessary especially when it comes to death. End-of-life care is not something that can simply be taught, it must be done to be learned. I have yet to experience the death of a patient but if that time comes I am confident in the support system I have found in other volunteers.