Most people think of dying at home when they think of hospice. Then again, most people don't want to think of hospice at all.
Although I work for hospice, I work mostly in a hospital. On the hospice inpatient unit our job is to find solutions to complex pain and symptom issues unmanageable at home. Well, that is the medical side of it.
As chaplain, my job is to be with people and their loved ones in a way that reminds them of what they value and hold dear. Yes, I have the better job. No, I'm not one bit biased; I just hate suction tubes, suppositories, and the math involved in pharmacology.
It is not uncommon for us to have patients for only a day before they die. It is not uncommon for us to have a complete turnover in our unit within a week. Hospital staff think, "Well, duh. That's our life every day."
The difference is that hospitals have the goal of prolonging life. Our goal is to relieve suffering, provide compassionate connection, and prepare for death. The difference in our goals changes the style of care.
An example of the difference: when I worked on regular units in hospitals and patients died, there were often many staff in the room because some sort of emergency code had been called. Everyone is talking, rarely is anyone talking to the patient. Family is asked to step outside. People have side conversations about their shift, the president, a sale at Kohl's; nervous conversations based in the fear of failure.
Vigorous attempts are made to save a life, an anonymous life. When the patient dies, comforting of the staff takes place in private because an environment in which success equals life has difficulty balancing the reality of grief and loss. (Don't get me wrong- if I should choke while we are eating tapas, get me to the hospital quickly. I'm just saying the perspective is not warm and fuzzy.)
In hospice when a patient dies we move slowly and deliberately. Prayers are said if appropriate, soothing words if not. There are no alarms or bells, few tubes or machines. If family is present, they are surrounding the patient and only a couple of staff are in the room at the same time. We all know the dying person's name.
Unless we are singing or praying, we the staff are very quiet. Afterwards we may give each other hugs, or thank one another for the care we gave that patient. In the best cases, we have come to know the family, so we better understand what this particular loss means to them. We talk about the patient again after death to assess the bereavement risk for the family, and if we were there, to share our opinions on whether it was a "good death" (when the patient dies in a way that was in line with their hopes). This latter part is important to us because we want every patient to die well, but know that this is not something we can truly control. The assurance that the best end occurred is a great comfort to hospice workers.
Which brings me to the Mayor. The Mayor was a member of the Greatest Generation. He was on our unit for a couple of weeks getting symptom management. He sat up and received visitors like a priest receives confessors. He smiled when staff came in. He read books and magazines. He was sound of mind, strong of character, and a gentleman in every way.
We planned to send him home with his medications stabilized to be with his family for his final weeks or months.
I went home from my shift on a Friday after saying good night to the Mayor. It's a habit you get into with certain patients. When they are fully aware of their surroundings you give them the respect that you would give them if you were a guest in their home. Before you leave "their place" you say goodbye. At least I do.
When I would check out with the Mayor, he'd look over his reading glasses, put out his hand for a shake, and bid me a happy evening. He also always thanked me for coming to see him, even though he had visitors every day. What a guy.
I came back Monday morning and went to say hello but the Mayor had gone home. It was a great way to start the week. The Mayor had become well enough to go home and live in the comfort of familiar surroundings. Or so I thought for about thirty minutes. And so did several of my co-workers. We were all smiles.
In team report we covered the deaths of the weekend. The Mayor had not gone to his home in Richmond but to his eternal home. We were shocked and distraught. How could this happen?
Now you are probably thinking, "You work in hospice every single day and you get distraught when a patient dies? One patient?" Well, yeah. It's called a breakdown in compartmentalization and here is how it works.
We can all agree - working in hospice is not easy. There have been 12 patient death weeks at our unit. And I mean work week not 7 day week. There are a limited number of ways to deal with that and remain engaged and open to the next 250 patients, much less 250 more families. In general, we do it through routine.
Our patients mostly die according to a couple of patterns. We learn the patterns and we say goodbye to them incrementally according to the pattern. We can handle it as long as it stays within the emotional safety of the rhythm we know which is usually one of gradual decline in communication and interest in the outside world. Just as a baby becomes increasingly interested in the world beyond what she can reach as she grows, the dying person becomes less engaged the closer she comes to death.
Until they don't. Like the Mayor.
On the last day of the Mayor's life he ate three small snacks, read a magazine, hosted family and guests in his room, and took a nap. As he was getting ready for bed he began to feel ill. He was sitting on the side of his bed waiting for the nurse to assist him to the bathroom. She entered and he shared that he didn't feel well. They talked. She checked on his vitals and she realized that the Mayor would not be following the pattern. She told him. He talked to her. She held his hand and laid him on his bed. She talked quietly to him and he to her until he died. It all lasted ten minutes.
The Mayor didn't die as we or he had hoped or planned. He was in a hospital not home. He was without his family. He had not finished his plans.
But he died with someone caring for him. Someone holding his hand. Someone who knew his name. Someone who mourned him when he was gone. Staff all hugged each other quite a bit that day we found out how the Mayor had died. Then we went into other people's rooms and remembered to give a little extra eye contact, hold their hands, and say goodbye when we left for the day. The dying may never end with hospice but neither does the learning.