W e have left the holidays behind and look to the New Year with all kinds of hope: hope that we will keep to our resolutions, hope that our loved ones will stay safe and healthy, hope for a winning …
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We have left the holidays behind and look to the New Year with all kinds of hope: hope that we will keep to our resolutions, hope that our loved ones will stay safe and healthy, hope for a winning team, or hope for tomorrow.
Our hopes tend to change over time, depending on our circumstances and life challenges, and they can influence how we cope with those challenges. Especially when dealing with a serious or progressive illness, hope can influence our well-being and how we think, feel and act in response to a potential threat.
What is hope?
The concept of hope is complex and multidimensional. As a noun, the Oxford Dictionary defines it as “a belief that something you want will happen,” and as a verb, “to want something to happen and think that it is possible.” This implies a desire for something to occur at a point in the future that is possible but not certain.
Similarly, The American Psychological Association defines hope as “the expectation that one will have positive experiences or that a potentially threatening or negative situation will not materialize or will ultimately result in a favorable state of affairs.” It is an emotion we intentionally choose or refuse to let go and indicates a degree of optimism about the future. It has also been described as a dynamic process adapting as circumstances change. Having hope provides an effective coping strategy for getting through demanding situations and has been linked to overall survival and the will to live.
On the other hand, hopelessness has been correlated with depression, despair, apathy, and fear. To quote Maya Angelou: “Hope and fear cannot occupy the same space. Invite one to stay.”
What affects hope?
Hope is influenced by many factors. A person’s religious beliefs can have a strong influence on their sense of hope and faith in the future. There could be cultural factors or maybe a deeply rooted belief that miracles can always happen. Basic personality traits, changing expectations, age, gender, and state of health can all play a role in framing a person’s hope. Have there been previous experiences when hopes came true or when hopes were never realized?
The role of hope in healthcare
Following the diagnosis of a life-threatening medical condition, hope for a cure is likely the first instinctive response and can motivate a person to rise above the current situation and look ahead. During the course of treatment, various amounts of medical information need to be shared and discussed. Healthcare providers often tread carefully regarding when, how, and what to disclose in an effort to support hope in their patients. Truth-telling may come with the risk of diminishing hope if the news is not good. Understandably, an individual’s level of hope may swing like a pendulum depending on the day, the latest labwork or any symptoms they may be experiencing.
“It is truly a remarkable human capacity to be able to hold a hoped-for outcome in view when surrounded by tragedy and suffering.” (Patricia Bruininks in The Unique Psychology of Hope)
The actor Micheal J. Fox, who was diagnosed at age 29 with Parkinson’s disease, describes hope as “informed optimism,” indicating the balancing act that can occur between hope and reality. Unrealistic hope can lead to potentially overly aggressive medical care, unnecessary suffering, missed opportunities and added disappointment. Even when there does not appear to be any curative options available, the message should never be that there is “no hope.” With support and compassion, an individual can consider reframing what still brings meaning to their life and change their hope from cure to comfort or from time in the hospital to time with family.
Is there something on a bucket list that could be accomplished? With honest discussions, they may decide to forego medical care in the hope for short-term improvement in quality of life. Hope can exist in this “in between world of waiting.” (Denis O’Hara in Hope in Counseling and Psychotherapy)
Dr. David Oliver was a university professor who produced 28 YouTube videos titled “Depriving Death of Its Strangeness” that followed his journey with Stage IV cancer. His initial hopes were to continue to learn, teach, and enjoy his family. When his treatments were no longer effective, he was asked what hope still looked like for him and he replied “hope to me is: H=being home, O=surrounded by Others, P=Pain free, and E=Excited about living to the end.” His focus became more about his relationships and less about his progressive illness. (In September I wrote a review of the book his wife published following his death: “Legacies From the Living Room.”)
The feathers of hope
If hope is linked with coping, well-being and even the willingness to live, how can it be reinforced and reimagined during a serious illness? The answer to “what still brings joy and meaning?” can help us know where to put our efforts. Spending time with those who lift our spirits can be beneficial, while restricting time with those who do not. Hope can be nurtured and enhanced through the senses by being in nature, listening to music that touches the spirit, or by appreciating or creating art. Books and readings that offer distraction, motivation, and/or insight could infuse hope.
The anonymous quote, “gratitude turns what we have into enough,” indicates that practicing gratitude has a role to play. This does not negate our disappointments or suffering but suggests making a conscious effort to see the glass half full. Gratitude can be cultivated in the smallest of moments: a cup of tea, a warm hug, a belly laugh, sunshine, a smile, or a call from a friend. Even during an illness, we can work on staying open to the beauty and acts of kindness around us or we may need to be the friend who pours that cup of tea and pulls up a chair.
Florence Nightingale, while nursing soldiers in the mid-19th century, was the first to emphasize the importance of the environment around her patients with attention to the basics: cleanliness, the right amount of light, the noise level and comfort measures. She observed that pain and over stimulation were having a negative effect on her patients and their level of hope. She also described “chattering hopes and advices” as exhausting to the spirit and recommended approaching all interactions with authenticity and compassion. These commonsense principles to promote hope and healing continue to be endorsed in nursing schools.
Sharing our stories, listening to each other, and bearing witness is key. This meets a basic human need to be heard and validated. It reinforces a sense of personhood and dignity, which is especially important when feeling vulnerable. “The difference between hope and despair is a different way of telling stories from the same facts.”(Alain de Botton)
Listening to, telling and retelling our stories helps to clarify what still brings hope, joy and meaning, even as circumstances change. Through this honest communication, we also demonstrate that no matter what, we will be there for each other.
Bonnie Evans, RN, MS, GNP-BC, GC-C, lives in Bristol and is a geriatric nurse practitioner, End of Life Doula, and certified grief counselor. She can be reached at bonnie@bonnieevansdoula.com.