Lynn Taylor, on hospice nursing

By Caroline Sniffen Smith, MSN, FNP, RN
March 4, 2002

What made you decide to go into hospice nursing?

I started hospice about six years ago. Actually, I started in the field of home health and then cross-trained into hospice nursing. I guess what made me decide to go into hospice nursing was when my mother was a hospice patient. It was a rewarding experience. They helped us through her death, and I realized that being a nurse and being a daughter are two separate things.

The nursing aspect I knew, but being a daughter, I didn't know what to expect and I didn't want to know; at the time, I had some denial.
Then the hospice nurse came in and talked us through it all. She explained each step of the process that my mother was going through and what we could expect, and it wasn't as frightening as we would have thought.

When you better understand the dying process, you are better prepared to go through it. Hospice made my mother more comfortable; it made us more comfortable in dealing with her terminal illness and death. You never really accept it, but you're better prepared when you know what is happening and are more educated through hospice.

I felt like I could help someone else who might be going through the same things I had gone through. As a hospice nurse and as a daughter with this personal experience, I could better understand where my patients were, not only physically but emotionally, in the process of terminal illness.

When hospice asked me to start home visits, at first I was reluctant because I thought it might bring back a lot of memories as to what I dealt with during my mother's time. But I said to myself, this might be a way that I could help somebody the way hospice helped us.

That is really why I decided to go ahead and learn and do hospice. I wanted the families and hospice patients to know that there is somebody who had been there and could relate to what was going on.

Describe what hospice nursing is. What do you believe is the most important aspect of being a hospice nurse?

Hospice nurses do anything and everything it takes to keep our patients and families-in the time that they have-comfortable. Pain management is a priority. There is so much we do, the little things, that we do not even realize we do.

Sometimes, I'll go into a home and there is somebody [a caregiver or family member] there and they haven't had anything to eat. Right now we have someone who is alone, so we go in, we sweep, we mop, we do a lot of different things. Here in the South, food is one of our main sources of comfort. I have patients who know when I come, the days I come; they have food out for us to eat during my visits.

We care for them in every aspect of their lives. There is a pamphlet that we have in our booklet that we give our patients and their families on the signs and symptoms of impending death and what the person is feeling. But, you know, to read about it and to actually go through it, [those] are two different things.

We are there to guide the patients and their loved ones through the stages of death. We are there at the time of their death and we are there afterward. We make visits after death to assist in the grieving process. Our team divides night call, so that a hospice nurse is there with the patient and their family at the time of death.

The most important part of being in hospice is being there for our patients, identifying their needs and the stage they are in-a lot of times just telling them and their family and reassuring them that what they are doing is correct and that they are doing everything they can do. A lot of times, they feel useless or helpless and they are not sure if they are doing what they need to do. To be there and guide them through this is the most important thing that we can do.

Hospice is not only for terminal cancer patients; it is for other terminal illnesses as well; for example, COPD, end-stage renal disease and heart disease. When a patient is at a point with the doctors when they are no longer able to do anything for him/her, they ask that we step in and make the final days comfortable. There is a lot of denial in the process when you speak of hospice. When families are feeling helpless and full of despair, we guide and direct them.

Is there special training for hospice nursing?
There is hospice training and on-the-job training, as well as a certification in hospice nursing.

We are constantly educating ourselves and our team with in-services on pain management, how to deal with death and dying, and the grieving process. This keeps us abreast of the latest, especially in the area of pain management.

A lot of our care with hospice patients deals with pain management and the new combinations of medications, especially when the patient is in the home, which is where I do my hospice visits.

How do you keep from feeling overwhelmed working with dying patients and their families?

We are professionals, yet we're human. I've cried many days and many nights with a lot of families, not only in their homes but when they've called me at night when there is a problem, they start [crying], and I start. Sometimes you can't separate it, and I don't think you ever should. When the compassion goes out of it, that is when I quit. I won't do it anymore. You cannot do this job unless you have compassion for people and to see the struggles that they go through.

One good thing we do have at hospice is that our staff is more [like a] family than employees. When we come into the office, we share what has happened, or we just vent how it feels. It does get overwhelming at times when you give day in and day out.

For example, when you've had a patient for several weeks or months at a time, and on Monday you see that they are fine, and then on Wednesday they start to go downhill. Sometimes, it does get to you, but we have an excellent "I" team leader who is good about letting us vent how we feel.

We work as a team and are able to bounce things off of each other and help support each other. There is also a chaplain who provides spiritual support to our patients and their families and who also provides spiritual support to us. We also have a social worker who provides community resources and instructs us in stress relief exercises.

It does get overwhelming at times, but to be able to help these patients and their families is what I love to do.

What has been the most difficult situation for you with a patient and/or their family?

The most difficult situation was caring for a personal friend of mine's mother. We have been friends for more than 30 years and [it was difficult] to see her as a vibrant person who took care of me, to taking care of her in her last moments.

The only way she would agree to become a hospice patient was if I were her nurse. She had that much faith and trust in me. She felt comfortable and knew that I would do any and everything to care for her.

I treat every patient in this way, but this was more personal and I gave her the personal attention I would have given my mother-she was like my other mother. I did the best I could and knowing that I was able to help her and her family during their most vulnerable moment. Nothing could compare to how I felt.

What is the most rewarding aspect of hospice nursing? What keeps you going?

When you see families several weeks or months after their loved one's death and they say, "Hey, do you remember me? I'm Mrs. So-and-So's daughter; you came out and saw Mama-oh, you did so much for us! We wouldn't have gotten through it if hospice hadn't been there."

You would be surprised at the number of people I have seen who have told me that. They are so grateful. That is what keeps me going. Knowing that I am helping these patients and their families, the way I was helped when my mother was dying.