Reflections on Hospice as a Lived Experience

Death, with its shrouded mystery, is often anticipated to be an inherently profound experience. The call for hospice volunteers came with words like “demanding,” “emotionally complex,” and framed the experience as one where I would “help the patient navigate the process of dying.” These characterizations are not necessarily untrue of my volunteer experience. Yet more than anything else, the experience of sitting each week with patients like ‘Peter‘, ‘Marie‘, ‘Joanne‘, and a host of others has reframed my understanding of the so-called dying process. While the physical, mental, and emotional changes that are a precursor to one’s eventual passing are indeed a process, it seems more accurate and productive to consider these changes as a process of living, rather than one of dying.

To me, the common phrase “death is a part of life” has always seemed to refer overwhelmingly to death’s ultimate inevitability. Yet, interpreted with an alternate twist, the phrase can be understood as pointing out the following: that the process of dying is in reality only one further — though final — set of experiences constituting one’s experience of living. In the senior living community where I volunteered, patients frequently spend their days gathered in a common living room, where they sit quietly, chat with each other, listen to music, receive visitors, do exercises, or play games to pass the time. As volunteers, we entered this community and participated together in these events and conversations. Typically, conversations were light in tone: us sharing stories from our respective lives or, in cases where patients had dementia, more amorphous exchange of sound and presence. Patients expressed day-to-day joys, including gratitude for friends or happy anticipation of dishes on the menu for lunch. The concerns patients shared were not necessarily weighty ones; sometimes, it was a case of a patient not liking the music we were playing, or being bored of a particular conversation.

I do not intend to diminish the significance of internal reflection that patients may have been undergoing in grappling with the nearness of their own death. However, I think it accurate to say that these existential considerations do not necessarily fill the dominant part of time and attention for most of the patients I worked with. The experience of dying may be profound, but it is not necessarily so, much as other experiences in one’s life may or may not be felt as profound in the moment. The everyday concerns and logistical challenges of living do not automatically abate to give way for focused and profound reflection, nor do these challenges cease to be inconsequential. Practical and immediate concerns exist: What’s for dinner? Am I tired? When will my visitor arrive? How do I operate the brake on my new wheelchair?

At times, patients did entrust to me more serious concerns: deeply-felt worries about caring for their families, uncertainties about their own physical health and prospects for care and physical rehabilitation. Yet even in these concerns, I saw more connection with the process of living than with some distinct experience of “death.” These are concerns which do not have clear or easy solutions, and in this regard, they are similar to the concerns we face throughout the entirety of our adult life. Even when the content of a patient’s concern is particular to their situation as a senior, the nature and emotional experience of their concerns is not inherently distinct.

From both fundamental and practical perspectives, I think it is beneficial to conceptualize the dying process as a part of life, rather than as a mystical process divorced from life. Doing so can reduce the resistance and sense of helplessness often engendered by death as an topic of discussion, and can situate caregivers in a frame-of-mind better prepared to handle the logistics and emotional weight of end-of-life care. In my hospice volunteer experience, I have found it is the same qualities that sustain our interpersonal relationships throughout life that remain invaluable in supporting those at the end-of-life: patience, compassion, attentiveness, and the recognition and validation of a listening-ear.