When I initially joined this program, I was not entirely sure what to expect. I understood that hospice programs were to medically assist people as they face the end of their life. However, I quickly realized through my volunteering that hospice, and dying in of itself, is much more than overcoming medical challenges. It is about helping someone to have a “good” death through physical and emotional nourishment.
Upon hearing that someone is dying, one may initially think of the medical treatments they may need to ease pain as their death approaches. Through this program, I discovered that physical well-being only encompasses a portion of hospice care and dying. To provide someone a good death, the patient’s emotional needs must be met. This includes establishing what is most important to the patient, which can involve what activities and hobbies they want to maintain, which loved ones they want around them, planning how to manage their finances and personal belongings once they are gone, and what to do when they are facing a medical emergency.
Knowing how to give someone a good death is not always obvious, especially when the patient may not be lucid enough to provide those explicit wants and desires. The patient I have been seeing during my volunteer shifts is living with Alzheimer’s Disease. This neurodegenerative disease can take someone’s ability to perceive reality as a healthy person would. My patient is often confused during my visits regarding why she is residing in a medical facility since she is seldom aware of her condition. This can make it difficult to understand what her wishes and needs are, as she sometimes cannot articulate them herself. To serve my patient to the best of my abilities, I needed to actively listen. I noticed that my patient would often repeat stories that were emotionally important to her, such as how she met her husband, what her marriage was like, and how lovely her children are. To help bring her a sense of calm and peace in a situation where she does not have much control, I would ask her to tell me stories that I know make her relieve happy memories. After many months of seeing my patient, I know these stories like the back of my hand, but seeing the smile that telling these stories bring my patient, I would be happy to listen to them many times over again.
Being involved in hospice care as a volunteer has sparked my interest in specializing in hospice and palliative care as a phsycian. Death is a taboo subject that is vigorously avoided in western culture; however, we all face death, and the more we talk about dying, we improve our odds of providing a good death for ourselves and for our loved ones. Even though I need to re-introduce myself to my patient nearly every visit, she sometimes grabs my hand and tells me “I’m so happy you came back”, and I know the positive difference I am making in her journey through dying.