Gathering my thoughts and hospice computer, I climbed the outdoor steps to the second-floor apartment. The gloom in the small room was palpable as I entered. Crowded together on the couch sat a group of relatives and sitting close by in a worn recliner was the patient, a man in his late 60’s, jaundiced skin betraying his terminal diagnosis of advanced pancreatic cancer. On the arm of his chair, arm circled protectively around the top sat what appeared to be a daughter.
After the introductions and greetings, we began to talk about what hospice is and does and how our services might be of help during this time. The patient waved his hand weakly to indicate his desire to speak, “This is it, isn’t it? I don’t have any more hope.”
It seemed almost as if everyone took a collective breath, held it and turned to me, waiting for some word that would help them through this impossibly difficult moment.
What would you say at this point?
As professional nurses, we are present to help people wherever they are on their journey. From pediatrics to geriatrics and everywhere in between, we work to help people recover, rehabilitate, or compensate. Sometimes, we find ourselves in situations such as the one describe above which fits the traditional definition of “hopeless,” and yet, we are there to help inspire some degree of hope, however small.
What is Hope?
The stuff of life...
As long as we have some hope, we can keep pushing forward.
A thought process...
Researcher Brene Brown says, “I was shocked to discover that hope is not an emotion; it's a way of thinking or a cognitive process. Emotions play a supporting role, but hope is really a thought process…” (http://www.bhevolution.org/public/cultivating_hope.page)
A tool to face the day...
Sometimes we hear ourselves or our colleagues referring to a reluctance to encourage “false hope,” or the possibility of inspiring unrealistic expectations in our patients. Given the definition above, maybe false hope is not such a concern since hope might be more about giving those in our care the tools they need to face the day, so they can manage to wring out a bit of joy even in the midst of terrible trials.
Hope fills the balloon of life...
We talk about hope all the time: I hope it doesn’t rain; I hope I don’t spill spaghetti on my white blouse; I hope he passes his test; I hope he gets better; I hope I will be forgiven. It is the same word, but holds vastly different meanings! Hope is hard to pin down—it fills the balloon of life and floats, held by a string of desire, tightly wound around our fist of determination and strong will. We won’t let go, for as long as there is hope, there is life.
So what is our role as nurses in inspiring hope?
While it is impossible to foresee the future, with our knowledge base, we can help our patients set goals they have the ability to meet. We can help them set goals for today, e.g. “Let’s focus on getting bathed and dressed and sit in the bedside chair for 20 minutes. Does that sound good to you?” Meeting goals, even small ones, helps us to feel a sense of achievement and success which gives us hope for reaching other, more long-term goals.
When life feels out of control, our patients may need help in focusing their goals and hopes on a more short term accomplishment. After a major stroke, or some other serious health set back, people have a hard time with looking too far ahead. We can help them reframe their thinking and thus give them true hope. By listening carefully and asking questions, we can help guide them to their own goals, zeroing in on what matters most.
When we get down to the nuts and bolts of life, time on earth is always rather limited. But when our patients and their families face a hospice nurse at the door, the limitations seem rather glaring and hope appears to take its bright light over into a corner where it is hard to reach. By helping our patients reframe their thinking to goals that are achievable in this new setting, we can help them have hope. For example, finding out what really matters to them in terms of pain management, family time, and closure can help leave them with a measure of hope.
What to say?
As I faced the family, I breathed in too, silently praying for inspiration and desperately asking for wisdom. “This is pretty hard, isn’t it? What is the hardest part for you?” I asked. He went on to talk about his fears of being a burden and of having pain that would be out of control. Once I understood his greatest concerns, I was able to help him and the family make plans for caring for him and was also able to describe some of our pain control plans. As we spoke, I could feel the gentle presence of hope re-enter the room. While the hope of eradicating his pancreatic cancer through treatment appeared to no longer be an option, there were other parts of his story that opened themselves up to hope and plans.
Make each day as good as it can be...
As I gathered my things two hours later, I touched the patient’s hand and spoke to him and his family, “None of us knows what tomorrow holds. But we will do our very best to care for you and to help make each day as good a day as it can be.”