A short book and quick read that uses brief vignettes to illustrate some key principles of providing hospice care. The principle audience is chaplains, but I feel it provides good, useful information for all professions, and probably even for lay people who may be looking for ways to support family or friends who are going through an end of life experience.
- Snippets of science-based knowledge regarding the patient experience and abilities at end of life and through the progression of dementia and how physical changes can impact a person’s ability to perceive and process information and to communicate. Using that knowledge, we can look for ways to help people find peace and contentment at end of life. The focus can shift from what they can no longer really do as they decline physically and cognitively, but to what they can still do.
- Offers examples of practical tools and techniques to connect with patients and their families
- Reinforced over and over – we cannot presume to know what the patient and family need. We are not the experts on knowing what their end of life experience should look like. We must be respectful to the ethic of autonomy and dignity that we are called to honor. For some people, it’s physical closeness and prayer. For some, it’s popcorn and games of dominoes. For some, it’s watching TV shows that may include violence and explicit sexual content.
- Reminder that there may be family history and dynamics that we don’t know about, so do not make assumptions based on the information available to us. We cannot make judgements, determine who is right or wrong, make excuses, or take sides in conflicts. We can only use the information to “be more aware of how the grief process and medical care are being impacted by those patterns”.
- Reminder that we are not there to “fix”, only to provide support at end of life. Must develop the ability to just “be with ourselves”, not filling up the silence with noise and distractions, so that we can just “be” with our patients, and to “sit with compassionate equanimity” in the midst of another’s spiritual, emotional, or physical pain.
- Hospice workers must set boundaries and engage in self-care, and bring a healthy and full self to their work, not look to take self-fulfillment from the patients and families that they are there to help.
Quote: “Chaplain, if one more kind, loving, well-intentioned, good-hearted person tells me my momma is in a better place, I’m gonna slap the shit out of them!”… I took her hands and said, “On behalf of all the kind, loving, well-intentioned, good-hearted but misguided people who say stupid things, I am so sorry. And when you slap the shit out of them, tell them you have the chaplain’s permission to do so.”