Reflecting on my first blog where I talked about why I became a hospice nurse, I describe how gratifying it is to care for others at this special and tender part of life—that just being there for patients and their family members means so much to them. In turn, I have learned so many important lessons from them about life—what’s important, what is not, and what brings true contentment.
The word “hospice” has an old fashion negative stigma attached to it. Simply put, hospice = dying, and fast. That may have been true or the standard at one time, so it’s understandable where that fear comes from. In fact, family members often ask hospice professionals not to use the word “hospice” in front of their loved one. They are concerned that the term would cause their loved one to give up hope. In my experience that is the furthest thing from the truth. Today, a hospice plan of care focuses on and strives to ensure the best quality of life for whatever time remains.
To qualify for the Medicare hospice benefit, a patient has a medical diagnosis and disease process that indicates six months or less of life, and will decline medically during the same time period. A hospice plan of care encourages our patients, and their loved ones, to live and to live well, until end of life.
The conversation about hospice typically begins in a doctor’s office. It is the MD, in conjunction with a patient and family, who makes the referral for hospice consult/care.
I am going to share an experience inspired by one of my patients who has been on a hospice plan of care for more than six months. What I am about to share is not exclusive to this one individual, but many who have chosen and planned out how to live with hospice care.
Elle (not her real name) has a cardiac condition, currently well-managed on a regimen of medications. She lives independently and is very social, enjoying cards, words, current events and her family. Elle is not dying in the sense that she has a terminal disease. However, being of sound mind she has decided that should she begin to decline significantly from her cardiac condition, she does not want to be hospitalized, she does not want any medical intervention to extend her life or attempt to bring her ‘back.’ She has said many times, “I’m over ninety, I’m not going to live forever.”
Beloved by her family and those who know her, she is fully supported with her advanced directives. She does not speak of death or dying on a regular basis, but she doesn’t avoid the topic either. If anything she will often joke that she keeps ‘waiting’ (to die) but then another birthday happens, and she laughs.
Elle feels good most of the time. Since I have had the distinguished pleasure to be a part of her care team, has Elle shown some medical decline? Yes. Is this stopping her from living? Not today. At times she feels so good that she will often question whether she should be following a hospice plan of care. We engage in conversation and review her goals of care for herself. As an RN it is part of my job to make sure her goals have not changed. Elle is completely at peace with whatever the future holds. Her personal goals for care work well with the hospice care plan.
Elle manages her daily/weekly medications herself, and is reasonably safe in her environment. Family is a phone call away, and she sees them often and speaks to them on the phone daily. She attends social gatherings in her community and continues to make plans.
Elle is not unique by stating she that is “not afraid to die,” but, she does not make dying her focus. With a hospice team to support her goals, she continues to live, and laugh, and learn and love. When she is tired she pushes through to the next activity, or takes time to rest.
Elle is an amazing woman. She’s strong, she is independent, is vocal and opinionated. She is kind, and loving and generous with her knowledge and experiences. The day she becomes less vocal and less opinionated, will be the day we will start to say our good-byes. Until then she is loved for who she is, and when her time comes, she will be completely encompassed with love, support and comfort.
Watch a video we created that captures the mission of Hebrew SeniorLife Hospice Care.