Hospice is much more than I thought
by Aaron Casp, UNC School of Medicine class of 2015
My initial preconceptions of people under hospice care were that they would be totally bedbound, and their entire life would be encompassed by their disease. I had assumed that they would be depressed and basically nonfunctional. Because of this, I initially cringed at the idea of visiting these patients because I was not sure how the idea of terminal illness and death would look when it was personified in an actual patient. However, I am very glad that I had this opportunity to not only dispel my previous notions, but also to demystify the hospice care process and force me to become more comfortable with facing a terminal patient.
Before the Hospice & Palliative Care Charlotte Region care team meeting at the start of the day, I had assumed that the hospice employees were comprised of nurses and nursing assistants only. The depth and breadth of expertise within the hospice team went far beyond that; each patient had a CNA, a nurse, a social worker, volunteer coordinator, as well as an attending physician. All of these people had input and were able to make care change suggestions to improve not only the patients’ medical comfort, but also various aspects of their lives. Each team member plays an intimate role in providing care and services for the patient, coordinating services, and assuming many of the complex tasks to navigate through the difficult end-of-life transition. But I never knew how difficult that transition might be for the actual hospice staff as well.
All of the team members had been working for hospice for several years, and were very used to the process. I assumed that they would be somewhat numb to the deaths, and approach it from a very detached, clinical standpoint. However, it became abundantly clear that the staff members were extremely close to their patients, and knew detailed information about their lives and families. The patients were almost treated as part of the hospice team’s family. As a result, updates for a patient’s decline or notifications that someone was near death were met with more emotion than I had expected. The hospice staff updated each other and laughed during the interdisciplinary meeting, and it began to feel equally therapeutic and work-related. Sharing stories and discussing cases at these meetings in an informal manner seem to lighten the burden for many of them, which I think is absolutely necessary when dealing with such an emotionally heavy topic. This commiseration and camaraderie all happened before we began seeing patients for the day, but was extremely thorough and surprisingly helpful for logistical purposes. It ensured that all the moving parts of the hospice care team were on the same page and had the same overall approach to an individual patient.
When we began actually seeing patients, it was surprising to me how many of them were going about their lives. They seemed to have moved beyond simply ruminating about their disease, and were now operating with quality of life as the primary outcome. I initially thought they would be anxious or depressed. While there might have been some component of that, many of them were actually at peace with their terminal prognosis and living relatively comfortably with their illness. Of course a few patients, especially those in the inpatient unit, were seriously ill, but their family members were calm and extremely grateful for the care they were receiving. Even during the most difficult time imaginable for these families, they were prepared and glad to know that their loved one was receiving comforting treatment. They were very appreciative of the support they were receiving and glad that they could concentrate on spending the last moments with their loved ones. The patients I met were all very comfortable with the fact that they were expected to die within a week or so, making the goals of care very clear and aligned between the doctor and patient.
Overall, my hospice experience made me realize that these services extend far beyond just the medical aspects of dying. The team members work hard to ensure that the patients have everything they need in order to have a good death. This, in turn, allows the patients to move beyond just dealing with their terminal disease, but to spend their final time with loved ones in relative comfort. These services are important for patients and families, and accomplish much more than I had ever thought previously.Explore posts in the same categories: awareness, education, end of life, hospice, Levine & Dickson Hospice House comment below, or link to this permanent URL from your own site.