When the act of writing inspires hope ...

Writing assignments often seem to come my way that in one way or another hit close to home, helping me address stubborn family issues that I have been avoiding -- either because I'd rather not think about them or they might be taboo to a family member deep in crisis.

One such issue is home hospice nursing, a subject I was contracted to write for a nursing journal, specifically ethical issues that may confront home hospice nurses.

Writing the story became almost a purging of fears that I had been experiencing in thinking about how to help my daughter cope with her husband's terminal illness. Her hubby was diagnosed with Stage IV stomach cancer that had spread. Their ability to live with the prognosis and still maintain steadfast hope and a positive outlook is inspiring, as well as perplexing. How can there be hope when all seems hopeless?

Yet, each month that we travel the 300-mile round trip to their home, we bring a meal, a cheerful word, and something that denotes hope of the future. One time it was a tree we planted -- my daughter dubbed it her hubby's "tree of life." Another time, we brought a super-size chopping block that to my chagrin he planned to keep outdoors in the weather for future barbecues. Fresh peaches are among the few things he still can eat. In September, I told him to plan on enjoying the last-of-season fresh peaches I'll be bringing.

My husband and I are both writers and due to our journalistic backgrounds somewhat negative-based, but on each trip we cue to only the positive. As long as our son-in-law can still play a slow round of golf now and then, listen to his music, and get his lumbering dog to fetch a few sticks, he seems happy enough. So, we focus on his golf game, the hound, and whatever else he or my daughter wish to talk about.

Even though the last doctor's report gave him a six-month prognosis, he seemed to get better. He strengthened his resolve and asked to return to stronger chemotherapy treatments. His color and demeanor improved, and he found energy for more frequent games of golf. But the pain is getting worse, and the doctor has more ordered tests to see if his condition has changed.

After interviewing nurses for the home hospice story, I no longer fear the doctor's report nor it's impact on my daughter or her golfer. I know that whatever happens, there is always hope for something, which gives strength and comfort in time of need.

One of the hospice nurses told me that part of nursing's role in providing comfort to incurably ill people includes protecting patients and their family members from inappropriate or unrealistic expectations about the patient’s future -- but that doesn't mean absence of hope. Hospice nurses don’t act as spiritual advisors or social workers, but in providing coaching and guidance to the patient and family they instill optimism for what can be.

When medical aid doesn't have the power to change the final outcome, nurses use their power to encourage the family and patient to establish goals they can accomplish. Isn't that hope? Isn't that a worthwhile aim? Any goal, however small, provides hope and makes each day special.

Another nurse spoke with such power about patients that I savored his words then and now:

"What I love about hospice is that we are dealing with diverse and wonderful populations of patients that we can help in their most difficult times. When given the prognosis, they suck the marrow of life and live fully each day, and we as nurses benefit from being part of their lives."

Those words give me solace that during the journey my daughter faces in helping her husband, she doesn't have to be alone. That when necessary she can avail herself of the guidance and coaching of hospice nurses.

Indeed, a nurse with the Hospice and Palliative Nurses Association offered to speak with my daughter when the time seems right. She also directed me to a study published in the March 2007 issue of the Journal of Pain and Symptom Management, http://www.www.nhpco.org/, that reports hospice care may prolong the lives of some terminally ill patients. (The journal cited an average of 29 more days of life.)

The concept of hospice, whether at home or in a facility, no longer frightens me, perhaps because not all hope is lost. Life still matters. And that's comforting to know.