Life is not measured by the breaths we take but by the moments that take our breath away.

-Author Unknown

One of the reasons I decided to write this book was because I wanted to share my knowledge and experiences of end-of-life care with nursing students and novice nurses. The majority of what I have learned throughout my career was learned through experience and the clinical setting. If there was a patient with a diagnosis that was unfamiliar, I would read about it. If there was a new procedure that a patient had undergone, I would research it. If there was a symptom that was not responding to a particular medication, I would explore possible reasons. End-of-life care, by its very nature, enabled me to gain a vast amount of knowledge, not only about various disease states and treatments, but about everything one can imagine is related to concerns and needs of those who are dying. There have been many improvements with medical and palliative interventions for cancer, heart disease, COPD and dementia during the past 15 years that have impacted the progression of end of life nursing care. It has grown in response to all the new research and evidence based practice. This research can show us what is effective in nursing interventions. Additionally, studies that asked patients to describe their experiences with healthcare have spurred further improvements in end of life.

This afterword is presented in question and answer format so the reader can use my own self-reflections to begin to contemplate what they have read and what it means to them. Self-reflection is essential in providing end-of-life care because the nurse will witness the full circle of human emotions and: happiness, joy, laughter, wisdom, forgiveness, anger, sorrow, pain, silence, and peace.

“What made you decide to work with dying patients?”

Working with patients who were dying was not something I planned on doing when I was in nursing school or even as a new nurse. I wanted very much to save people’s lives and restore them back to an optimal state of wellness, not to be beside them as they died. Once my own children were born, I decided to work in home care because the schedule was more flexible. I had several encounters with patients who were living with advanced illnesses and saw firsthand what they went through. Some patients were very open about their illnesses and their own mortality. In homecare, the nurse is in the patient’s setting, not vice versa, and many felt more comfortable to talk about their concerns. I liked being able to just talk with patients and make them feel better by just listening to them. I remember visiting a patient who I took care of for several months. This patient wasn’t always the most pleasant, as he had been living with some serious health problems and functional limitations. He was angry and depressed most of the time. He was going to be switching over to hospice care, and I remember him telling me about all the things that hospice was going to help him do before he died. He was the happiest I had ever seen him, and it was because of this thing called “hospice.” I didn’t know that much about hospice at that time but it intrigued me after seeing this patient’s response about it.

As I experienced more and more patients who were afflicted with various illnesses that caused a great deal of pain and suffering, I knew that there was more that I could do to help patients like these. There was an interaction with one particular patient that was the reason I decided to care for patients who were dying. This patient had stage four lung cancer with bone metastasis and I called his physician to request that a pain medication be ordered. The patient had nothing but acetaminophen ordered for pain and his pain was intolerable. I was angry that no one had advocated for this patient before. Why wasn’t he already receiving a pain medication? Why didn’t his doctor order one for him and why didn’t his regular nurse call and get him one sooner? How could anyone let this patient suffer this way? That single event made me decide that my place was to help patients who were nearing the end of life. Soon after that I applied for a job in hospice and palliative home care.

“How can you work with patients who are going to die?”

I cannot recall how often patients, families, and other nurses and clinicians who do not work in hospice ask me this question. How do nurses who work with patients who are dying deal with the difficult things that they encounter? Death is an event that is both dreaded and perceived negatively. People do not like to talk about it, plan for it, or acknowledge its presence, even when it is right there. I suppose that anyone who deals with patients who are dying on a daily basis must at some point become comfortable with their role. After all, if they weren’t, they would not be an effective resource for those who were dying. My response to this question is, “How could I not work with these patients?” I feel honored to have been able to share in the end of life journeys with so many patients and their families. It has been a true blessing in my life to be able to really make a difference in the lives of so many people. The special knowledge and great compassion I have for people who have been afflicted with life limiting illnesses has made it possible for me to do this type of work.

As I mentioned before, I feel the need to be an advocate for these patients throughout their journey because there can be many needs and concerns that go unanswered and unnoticed. It baffles me how today, with all the technological advances that have been made in medicine, the basics often become lost. I used to witness that with hospitalized patients when I worked in acute care. Sometimes there would be a new patient on the unit who would not get a meal tray. Was it ordered? Who checked to see what they had eaten, or if they were eating at all? It can be the same way in end-of-life care. There may be a patient with end stage cancer who does not have any pain when they are admitted to hospice. While that is a blessing, those of us who work in the field realize that patients with advanced illnesses can deteriorate quickly. A good nurse or clinician should anticipate what the patient might need after their assessment. In hospice, it is always a good idea to have interventions readily available for management of common end of life symptoms. This can include pain, dyspnea, nausea, incontinence, respiratory secretions and anxiety. In some hospices, there are “hospice kits” which contain limited doses of medications used to treat some of these symptoms; patients receive a kit after admission to home hospice care. I have had my share of patients who have deteriorated quickly and had nothing in the home to quickly manage that symptom. My role was to help get them relief, and after various calls, persistence, and advocacy, I was able to do that for them. The most rewarding part of my job was being able to assess a patient’s needs and quickly respond to getting those needs met.

“Do you ever get sad or cry during or after losing a patient you were very fond of?”

This question is really a no brainer. How could I not get sad when someone I have gotten to know and cared for has died? That sadness was usually for me, not for that person. I was sad because they were gone and I would not be able to go to their home and help them any longer. When I thought instead about the person who died and all the things they were living with and going through when they were here, I usually felt glad that they were finally at peace and would not have to live that way anymore. For the most part, nurses and clinicians have a good handle on how to deal with their own emotions in the context of caring for others, because of that invisible barrier that nurses are supposed to keep safely in between themselves and their patients. This barrier is not impermeable, though, and nurses can feel sadness and loss after their patient dies.

I have been very good at keeping my composure in the homes of patients who were suffering or who have just died. I go into an automatic “comfort the family and do your job” mode, and that helps to keep myself in check at that time. Later on, I find myself reflecting on the patient and thinking about what they meant to me and the interactions that I had with them. There have been a few rare occasions that I have felt a strong desire to attend a patient’s funeral. As a hospice nurse, this is not possible to do with every patient. There have been a few patients who for one reason or another I had really bonded with, which caused me to seek closure by attending the funeral. Closure is essential for the clinician working in hospice. Exposure to frequent emotional stresses without some way to cope can negatively affect the clinician, which would greatly impact the subsequent care they provide.

“Do you ever feel that you have lost any nursing skills because you work in hospice?”

This might seem like a silly question but I have encountered the perception that, once a patient enters hospice, there is nothing to be done for them anymore, and that the nurse loses their nursing skills because of this. I can tell you that I have completed more thorough assessments and administered more interventions as a hospice nurse than I ever did working with non-hospice patients. The rapid progression of the patient’s illness warrants accurate and continual assessment and quick response to changes in status. I personally feel as though I really honed in on my nursing skills when working in hospice. As far as communication skills, hospice is where I developed expertise in these as well. So much of the role is dependent on effective nurse-patient-family communication, and that was an area that developed for me while working in hospice.

I also feel as though working in end-of-life care provided me with continual education in the field. Instead of just being specialized in one disease state, I felt very knowledgeable in many types of illnesses and their various treatments. I became well versed in oncology, cardiac, pulmonary, and neuromuscular illnesses. I also learned a lot about the health care system in general and reimbursement mechanisms. In addition, nurses who work in end-of-life care also learn about family dynamics and how that impacts both the patient and the family during that time. No, I do not feel as though hospice has made me lose anything; in fact, it has only enriched and improved my nursing knowledge and skills.

“What are some of the most rewarding things about working with hospice patients?”

Working in hospice has truly been a blessing for me in my life. Hospice nursing has made me be a better person because I have witnessed such courage and persistence in the human spirit. I have seen people live with terrible illnesses that cause a lot of suffering and distress yet they remain pleasant and loving. I have also seen the worst in people and how unmanaged symptoms and complicated grief could tear patients and families apart. These experiences, both good and bad, have helped me to mature and to really see what is important in life. It has helped me to appreciate good health and all that I have in life. It has helped me treat those around me a little better because you never know what the next day holds. It has helped me become more spiritual and open to the various possibilities that exist for us when we leave this physical world. It has helped me prepare myself for the losses I have had to face in my own life and help me be a better daughter, sister, wife, mother, friend, and nurse. So as you can see, I have reaped many personal benefits and rewards from this type of work.

I also find that working with hospice patients in home health care is even more rewarding because you are invited into a total stranger’s home and allowed to be a part of their journey and life for a while. I always feel rewarded to be able to help provide information and teach patients and families about how to manage their illness, to advocate for patients so that they can have what they need to improve their quality of life, and to take part in the little everyday things that mean so much to them during this time in their lives. I remember a patient who could not take an actual shower in her tub for several years due to her health. When I admitted her to home hospice, I evaluated her environment and was able to get her grab bars, a special extended sprayer, and a shower chair so she could get in the shower. I must admit that I got a lot of personal joy out of seeing her so happy to be able to get her hair washed the way she wanted it washed in the shower. It is rewarding to be able to make someone so happy for such little time and work on my part.

Finally, the other most rewarding thing that I feel privileged to be able to do is to provide a family member the peace of mind that their loved one was given excellent nursing care at the end of their lives. Hopefully I have done my job well enough to be able to provide them with quality care that they can reflect on with the last memories they have of their loved one. I feel rewarded to be able to help a patient become comfortable, peaceful and as content as they can be instead of in an environment that is filled with pain, suffering and chaos. Often it is the latter that I find myself walking into when I first meet a patient, and my job is to help transform their environment into a place where they can have a dignified and peaceful death.