How Can You Do That Work?

When I spent my professional life as a full-time emergency room nurse, my friends could not get enough of my stories. They loved to hear about the foolish and absurd. Some even liked the gory tales, as long as they had a good outcome. When I switched to hospice nursing in 1991, the requests for stories ceased instantly.

Hospice staff members are often asked why we do the work we do. As an answer to this question, here are the stories of a few of the people who have taught me, and continue to teach me, why I love what I do.

A Level of Trust

I stood at my car looking back at the house. The sensation is familiar, like sitting in meeting for worship mo-ments before we close. It is the feeling of coming to the end of a complete, gathered meeting. The difference is that this spiritual exercise will close when the spirit of the young woman inside the house "shakes hands" with God as her life ends. The rest of the house will respond in several ways to this closure. There will be pain and sadness. There will also be relief.

She was in her early 40s. The breast cancer had spread to a dreadful extent. Her current pain was due to the disease in her spine. She was incredibly thin and a kerchief covered the sparse hair on her head, but she still managed to look like a mother when she tried to comfort her teenage children. The rest of the family was assembled around the house: her partner (the stepfather), her sister, and her best friend. Others stopped in from time to time. Except for her sister and best friend, few could bear to spend much time in the room. Her pain was overwhelming; she was severely uncomfortable but stoic, trying to downplay her misery. For the rest of them her pain was physically present; like sharp stones that prevented them from sitting on any chair in the room.

To control her pain, her primary nurse had started her on a subcutaneous pump that delivers a continuous dose of opioid pain medication under the skin. Her aggressive disease had continued to spread and was destroying her spine. About three or four hours ago her pain had broken through the medication dose she was on. The family had delayed calling the triage nurse as "it wasn’t so bad" at first. By the time I received the call and traveled the 45 minutes to the home, it was about noon, and her pain was intolerable.

Over the course of the afternoon there were multiple problems: with the pump (the concentration was wrong, making it difficult to easily increase the dose); with her doctor (four calls over 45 minutes to find him—half an hour to talk him into the doses she needed); with the pharmacy (had the wrong size pump cassette and sent the wrong concentration the first time); and with the delivery van (got lost with the right cassettes—twice). In the meantime, I increased her dose as far as I could, making her more comfortable but by no means pain-free. I watched her pump sites and had to change them every hour or so due to the volume of drug infusing. In between phone calls and site changes I tried to sit with different family members so I could answer questions and respond to their distress. Her sister and best friend helped me pair her son and daughter with relatives and friends who could provide more support than simply projecting expectations of stoic behavior. She herself had no desire to talk to anyone, but conveyed a certain gratitude for the gentleness of the hands caring for her.

Finally, after about four hours, I had the pump cassettes and medication she needed. I set them up and waited to make sure the medication was effective. When she was pain-free she finally fell asleep. More at ease themselves, the family was able to learn how to make the allowable changes to the pump and use the extra breakthrough doses. We also talked about what to expect in her final hours, and I invited them to call for help as soon as they needed it.

As I left the house the Sun was starting to set. The emotional clatter when I arrived had been replaced by a deep waiting for closure. In seven hours another nurse would come to attend to the end of her physical life and provide support for her family.

I had never met these people before. I had walked into the center of their home and stayed for six hours. Because I was able to offer the care, support and information they needed they opened their hearts to me and let me share the spiritual evolution of that long afternoon. One reason we do this work is that those who are dying, and their families, will usually let hospice staff and volunteers into their homes and lives with a level of trust rarely seen in other situations.

A Learning Experience

The first hospice I worked for grouped their nurses into teams of three and then added aides, chaplains, and social workers. We nurses had our desks together, consulted on and covered each other’s cases, and provided each other with support when the work challenged us the most. My first team was Kate, Kyuong, and myself. Kate was raised Catholic and had an incredible work ethic and a true understanding of how family and community interacted in many of the neighborhoods of Philadelphia. I was the Quaker activist, determined to bring the best possible resources and clinical skills to my patients and their families. Then there was Kyoung.

Kyoung was several generations older than Kate and me. She was a grandmother who had emigrated from Korea 35 years before. She had worked for many years as a labor and delivery nurse and childbirth educator. About five years before I arrived she had decided to start working in hospice and convinced our hospice manager to hire her. She refused to be specific about her reasons for such a significant change, stating, "It was time." She brought a uniquely Asian perspective to the way the three of us approached our work and families.

Kyoung taught the entire team the concept of "complete" death. She said that a hospice death was complete when all of the aspects of the person and family were as good as they could be for that family at the time of death. If we had been able to assist the family to reach the best physical, emotional, social, and spiritual status that they were capable of at this time in their lives, then we had completely met our goals. We were not looking for "perfect" experiences, but rather, what was right for a particular patient and family.

There is always your first hospice patient. Orientation means following and assisting experienced nurses and covering other nurses’ patients for a short duration with supervision. When you come off orientation you are assigned people to whom you provide primary hospice care. Your first patient is the first person you admit to the hospice under your own care.

Bernice was my first. She was an older woman who had lived alone and now had a granddaughter staying with her to care for her. Bernice’s long-struggling kidneys had now failed altogether. She considered the doctor’s pleas to start dialysis immediately. Then she decided that the van trips (three times a week), vascular access (surgical or implanted catheters), and four-hour-long treatments were not what she desired for the life she wanted at this age. To the surprise and mild distress of her doctors she refused dialysis and called for hospice. I would be her nurse.

It was a great case for a new hospice nurse. The renal failure would likely end her life in 5 to 14 days. There would almost certainly be some symptoms to manage. The uremic salts were likely to produce significantly unpleasant itching. Nausea and changing mental status would also be factors. Bernice was a wise woman, happy to take advantage of the support offered by various team members. Besides my visits, Bernice and her family responded well to the visits of hospice aides, chaplain, social worker, and volunteer. About 11 days later, her mild symptoms well controlled, Bernice fell asleep for the last time. She died quietly the next day, and on that day I started my diary of the people who were my first year in hospice. Bernice had set her limits on what was a "complete" life for her. We had spent our visits talking more about her life and experience than about illness and death.

Another reason we do this work is that the people we are privileged to work with and care for teach us so much.

Who Is Meant to Do This

I spent the next few years developing an aids specialty for our hospice. Then I moved on to work for different hospices: on start-up team, as supervisor, as department head, and eventually as a clinical manger. Somewhere along the line I learned how to tell when a new staff member was meant to do hospice work long-term.

After about six months of full-time hospice work, most of us have a startling experience. As we are driving through the area we work we suddenly stop and realize that we can look down any number of streets and see houses where people have died in our care. The experience can be overwhelming. However, it is what we feel, after we remember all these people, that matters. The staff member who feels grief and loss when they remember the people and their homes and families needs to find another area of work. Instead, most hospice staff remember the people and the qualities that made up those families and the things we were able to do to improve the process for all involved. There is a sense of satisfaction, not grief. That is why we do this work.

The Challenge

A few years ago I was consulting for a hospice where I had previously been clinical manager. I was mostly dealing with regulatory issues, but also consulting on difficult cases. It was then that I met "The Judge." He was a senior judge in a state appellate court. He had been diagnosed with head and neck cancer many years before. He had brought all the resources of his dominating personality, social and political connections, and financial standing to bear in fighting a particularly aggressive cancer. He had many times lived beyond the expectations of his doctors. Numerous rounds of aggressive and then experimental chemotherapy, massively disfiguring; and then reconstructive surgery: every treatment that could be hunted down was used to fight his enemy, his cancer. During all of this he continued to run his court, hearing cases no matter what his condition or appearance. Now, after eight years, he had lost the war. At least his doctors and family had come to terms with this fact. I was never certain he had accepted this, and by the time I met him, significant communication was impossible.

I could have written a manual of hospice care based on the last eight weeks of the judge’s life. The disease that he fought so hard fought back. He bled, he seized, he had respiratory problems; he had a horrible, odorous tumor coming out of his body; he had pain; and rarely, he had fear. Still, he would not die. He would stop breathing, then start again. One by one we quickly controlled his symptoms, then the next ones, and the next. I got to know his family very well, and they got to know me. We all realized that the judge was going to go out fighting. The family and entire hospice team eventually learned to accept what was happening as consistent with the way he had lived his life. We kept addressing new symptoms, supporting each other, and even occasionally found humor in odd places. When it was finally over, the family handed me his medical records; they hoped I would write about him.

We do this work because sometimes we are profoundly challenged, and then are able to respond to the best of our abilities. Many of us share the understanding that God stands with us as we stand with the people we care for and their families.

TylaAnn Burger

TylaAnn Burger, a member of Green Street Meeting in Philadelphia, Pa., has been a nurse for 25 years, 12 of them in hospice—from staff nurse to clinical manager. She is co-convener of Friends Hospice Project.