Misconceptions about Hospice
Hospice. Just that one, simple word can cause people to ‘head for the hills.’ This one word can drive fear into people’s hearts that they can’t even talk about it. Fear that paralyzes well-informed decision making ability, validates misinformation in their own mind, and can inhibit comprehensive end-of-life care.
Often times before the heart-to-heart conversation can take place, one has to overcome the misconceptions of hospice. Misconceptions based sometimes on cultural differences, or previous bad experiences with healthcare. Hospice is not about giving up. It doesn’t mean the Grim Reaper will come. It doesn’t mean vultures are circling. It doesn’t mean the patient will be euthanized. Sadly, and all too often, some people believe just this. Having the heart-to-heart hospice conversation takes patience, and being willing to show your own ‘underbelly’—being vulnerable to the raw conversation about someone who’s in the twilight of their life.
I once heard an oncologist say, “Hospice is life-giving.” How true! It’s about choices in end-of-life care, a shift in focus from treating the disease to treating the patient and loved ones as a whole, and comfort—physical, emotional, and spiritual. I like to describe what hospice does like this—wrapping our arms around the patient and loved ones, and walking them through this phase in life.
The audience for a hospice conversation varies the approach, too. When sitting down to discuss hospice, I approach a child and the child’s family very different than I do someone who’s elderly, for example.
Tips for having the heart-to-heart hospice conversation can be broken down into three main categories:
- Be fully present
- Recognize the patient’s understanding of their illness, and what’s important to them
- Leave your own prejudices about death and dying behind
Being fully present means to meet a patient and family where they’re at. Listen, ask questions—open-ended questions, and lots of them. Give the patient the opportunity to express how they feel, what they want, and what they don’t want. Recognize what stage they’re in—Denial, Anger, Bargaining, Depression, Acceptance. (These stages were identified by Elisabeth Kubler Ross, in On Death and Dying)
Recognizing a patient’s understanding of their illness requires again, listening and asking questions (noticing a pattern, here?). Does the patient understand their diagnosis, their choices and options about care? Very often, patients don’t come right out and ask about hospice, but rather they tell you in an indirect way that they want to talk about it. Examples of this include, “I don’t want to go to the hospital anymore,” or, “I just can’t take anymore chemo.”
Leaving our own prejudices behind is vital to having a hospice conversation. Hospice is about the patient—not us. Hospice is about advocating for what the patient and family need, not about what we think, or what we want. Listen to how the patient feels—listen to their stories, their legacy, their contributions. Facilitate patients sharing their story—the rewards are enormous for patients and families! Often times I am so deeply moved to just have the privilege of being a part of this conversation. Hearing what brings a child joy or hearing them ‘introduce’ me to their favorite stuffed animal, or hearing an elderly patient’s World War II story—these moments are keepers. The innocence of these conversations is simply, beautiful.