"What brought you to work with hospice?" As we buckled our seat belts, I looked over at Brenda, our new nurse in orientation with the question.She described a prior life in customer service, then a change of direction leading to nursing school. While a student, she did a rotation at our hospice house and was "hooked." She said "I felt like I had a calling to do this." She continued her career, working to gain the needed experience before applying and being hired.
I reflected back on my own "calling" and remembered the time when my sister-in-law was admitted to the hospice house for end of life care related to her long term fight with ovarian cancer. She received excellent and attentive care-well regulated pain management, creative wound care and responsive social worker support. Both at home and in the hospice house, she was treated with compassion and dignity at the end of her life. I was impressed with the skill and knowledge I saw.
My eyes were opened to the fact that hospice was a lot more than I previously understood. As a Parish Nurse for many years, I had often informed families about hospice as one option at the end of life. But I did so without full knowledge of what the experience of hospice meant. During that difficult time with my own family member, I made a mental note to come back and to find a way to join this team so that I could help offer to others what they offered to me. A year later, when my personal and professional life allowed it, I did come back to answer the call and become a hospice nurse.
As Brenda and I rode along on that fall day, the leaves swirled in the biting wind. I reached over to adjust the heat and asked Brenda if she had any questions for me. She shyly admitted that even though she felt a sense of calling, she did have many questions about just what is a hospice nurse? What do they really do?
I tried to give her an overview. Hospice nurses are surprisingly versatile. Some work in the more acute care setting of hospice houses, some work as liaisons between hospice and home or inpatient end of life care, and some as visiting nurses, going to wherever the patient calls home-the nursing home, assisted living, apartments, grand houses and humble trailers.
Everywhere hospice nurses go they carry a message of hope, seemingly an illogical proposition given the terminal diagnosis our patients have: life expectancy of six months or less . But the hope we bring is simply this-a pledge to the patient and family that while none of us knows how long we have to live, we will do whatever we can to help make every day as good a day as it can be. We commit ourselves to helping the patient and their family cope.
We do our upmost to keep pain well controlled. We are creative in looking for ways to help and we employ all the resources of our team: the nurse, aide, social worker, administration, chaplain, physician, volunteers and others. After the death, we stand by ready to offer help with bereavement and closure.
A hospice nurse's day can include many technically challenging duties. We work with pain pumps, a variety of drainage tubes and ports, some feeding tubes, respiratory assistive devices and the list goes on. Although these are important tasks, the bulk of our days centers on assessments, judgement calls, prioritizing, helping family caregivers and interfacing with the physician responsible for the care.
Brenda listened carefully and nodded as I explained some of what is involved in hospice care. Her next question surprised me: "So how do people know when it's time to call hospice. Who initiates the referral and how does that work?" I explained that we must have a physician referral in order to see a patient. Physicians can recommend hospice when they feel that the patient has six months or less to live. Families or the patient themselves can initiate the discussion, but hospice requires a physician order before an evaluation visit can proceed.
I further explained that Medicare lays out clear guidelines about who qualifies for hospice. For instance, it is not enough to have Alzheimer's Disease. The person must have several markers of decline including things like recurrent infections, difficulty swallowing, decreased mobility and loss of ability to communicate effectively. All other chronic conditions-end stage heart, liver or kidney disease, Parkinson's, etc., have similar required benchmarks.
Cancer qualifies as a hospice diagnosis when curative treatment is no longer an option and the patient is prepared to pursue comfort measures only. It is that pivotal change from preserving life to treasuring life.
As we neared the patient's house, we talked about what we should expect regarding the care of a patient we were about to see. We talked about how we contact the physician, the equipment companies and what kinds of information we needed to go over with the patient and her family. I pulled up the gravel driveway and put the car in park, beginning to gather my supplies before going in. Brenda looked over at me and said she had one more question. "What keeps you going in the face of so much death?"
I paused in my rummaging through my supply bag to give the question my full attention. I answered honestly that in my life the well of faith keeps me from going dry and helps me stay centered on the hope in life-all of it. Staying replenished requires commitment to a balanced lifestyle, one that focuses on fun and fitness as well as on spiritual teachings and fellowship with others. While the deaths are sad and some of them more difficult than others, as hospice nurses we bring structured help to the time surrounding death. We offer technical assistance, spiritual support and the gift of presence at a very critical time. The rewards are immense in that we are often accepted as temporary family members, admitted with a season pass into our patients' hearts and lives.
As we began walking up the driveway toward the patient's house I glanced over again at my new coworker and smiled. Brenda would touch many lives.
By Joy Eastridge BSN, RN, CHPN
