“Helen” is an elderly woman who lives in one of the nicer nursing homes in my area. She had an extremely difficult life growing up, which caused her to deal with addiction and its after-effects for many years. While she has remained a staunch Catholic, the “big book” of Alcoholics Anonymous holds a place in her heart as well. Helen is quite crippled and is in bed most of the time. While this leaves her rather isolated, whenever she is up she becomes quite anxious and often asks to be put back in bed. She is in almost constant pain from arthritis, which aggravates her anxiety, which in turn aggravates her pain. However, she is remarkably pleasant to visit. She treasures her Catholic faith, watching Mass every day and often talking about her faith with me.
On a recent visit, as I was leaving, she called out “thank you so much for coming, dying is very lonely.” This statement struck my heart, as it’s the most direct someone has ever been about their own dying experience.
Helen has talked openly about dying for quite some time. She has asked me, as well as most of our other staff, what it means to have a “happy death.” We’ve talked about heaven. We’ve talked about religion and why bad things happen. However the most poignant times have been when she’s shared the joys and comforts she finds in her faith, as well as the questions and concerns that have troubled her for so long. These times have been the rare chance for her to connect with someone who is not there to do something to her or only pay a cursory visit.
I find that residents do at times start to bare their souls to those that care for them. In today’s work climate in healthcare though, that is a rare commodity. Most facilities are chronically understaffed, and those that aren’t are staffed in many cases by new hires and agency staff who are there only temporarily. Even in the best circumstances with the most caring employees, an individual staff member may positively and individually interact with a person for a few hours in total over the course of a day. This is based on general observation, but past data lends some support to this idea. In a 2011 study of time nurses spent with patients in a teaching hospital in Australia, it was found that nurses spent only about 37% of their time with patients. The majority of their time was spent communicating with other professionals, providing indirect care, and managing medications. A similar 2018 study found only 33% of a nurse’s time during the day was spent even physically in the patient’s room. A more recent report by PHI found that nursing assistants such as CNA’s and HHA’s spent about 2 hours per day in one-on-one direct care per patient, a figure which far surpassed the amount of time spent by RN’s and LPN’s.
While this sounds like a lot, consider that this is not two hours all in one shot. This will include dressing, bathing, toileting, cleaning, and meals. While interaction and conversation often happen during these times, it almost always occurs when something else is being done. I often see that staff may be having conversations with other people during care and not actually the patient, as if they weren’t even there. I recently visited another patient of mine who shared that she no longer bothers to learn the names of staff because they change so often. She used to know everyone, but as turnover increased it seemed to her that the same person was rarely there more than a few weeks. “Anyway,” she said, “they’re only in here for a few minutes anyway. It hardly makes sense to get to know them.”
One of the best and most unexpected benefits of hospice is that we can actually spend quality time with our people. At my hospice, we are encouraged to spend at least a half hour of quality one-on-one attention to our patients when we visit them. We can do this because, unlike in a hospital or nursing home, we are not expected to be caring for an entire wing of people at a time. Our aides for example may have eight or nine people to see in a day, and even this is considered a lot. I usually average about five visits a day. While some visits may be only fifteen minutes (some actually don’t want much company) others may be over an hour. In our visits we are able to do what facility staff often don’t have time to do: take residents outside, play games or do art projects, or simply engage in life review.
These interactions have positive social and psychological effects as well as spiritual ones. Feelings of loneliness and abandonment can lead to feelings of being abandoned by God, feelings of guilt or shame, or other pains that hurt at the very core of our being. The mere presence of another is helpful and beneficial to those struggling with loneliness and dying. It doesn’t require sainthood or a counseling degree to sit with someone through these struggles either. I used to be worried about what I would say to or do with those I saw on hospice. I would plan and worry, only to find that whatever I planned wasn’t needed, and whatever I worried about never happened. I grew to love my job, primarily because of the people I have met. They have in many cases given me much more than I could ever give back.