The courage to hope...
What does hope mean to you? Take a moment to pause and let it sink in.
What does hope mean to you?
Take a moment to pause and let it sink in. It’s one of those words that carries both weight and lightness. It’s defined differently for so many and evokes a quality of presence when experienced. We carry hopes and dreams in our hearts and minds, many of which are unspoken. We use it in passing when connecting with others and sending them on their way as in “I hope you have a great day”.
People hope for different things … winning the lottery, a happier relationship, deeper spiritual connection, winning a gold medal, getting that big promotion, overcoming a disease, realizing a dream … not dying.
Hope is an ephemeral experience, a state shifter that allows us to pause and imagine a preferred future.
Hope was the one thing that got me through my darkest hours after my sister Tracy’s death.
Hope is a complex process that occurs in the context of time. It is influenced by our past experiences, values, relationships, and culture. Hope is something we turn to when we grapple with uncertainty, wrestling with what is and wishing for something different. Hope is often a temporary solution that eases our present pain. Think of hope as a soothing balm or a numbing cream, allowing us to press pause by generating a new possibility of something better.
Researchers Jevne & Nekolaichuk (1999) speak about hope as possibility, not probability. I appreciate their invitation as it invites us to explore what might be, while allowing what is to unfold. Hope invites us to pause and review our past experiences so that we can build a bridge towards a more aspirational horizon.
For me, hope has kept Tracy alive.
Even now, 23 years after her death, Tracy’s Hope has served to continue our bond. Despite her death, I still feel her presence as she continues to impact my life and those she loved. Tracy’s Hope created the space for me to channel my deep grief in a more positive and life-giving manner. It allowed me to process my pain while focusing on something positive that continued her legacy and brought meaning to my life. Tracy’s Hope was a beacon of possibility that gave me the time and space to mourn.
Without promising eternal life, health care providers have a dual obligation of being truth tellers and keepers of faith. To offer one without the other does a disservice and negatively impacts someone’s experience while approaching end-of-life. When we worry about giving false hope, people may experience resentment or despair and hopelessness. On the other hand, some care providers want patients to be optimistic at all costs so attempt to soften the bad news. By substituting false hope for realistic hope, they are projecting a better-than-expected outcome which denies the patient and their families their right to choose. A patient centric and humanistic approach is to share openly, compassionately, and skilfully, always remembering that the patient has the right to know.
For those supporting someone with a life-limiting illness, I’ve provided a few mindful tips to keep at the fore – remember clear is kind:
o Be self aware: Be aware of your own assumptions about dying, pain, end-of-life.
o Remember that our words shape our worlds: Be mindful of the language you use when speaking with patients and their families.
o Honour the patient: They know themselves better than you can know them. They are still living, while they are dying and deserve to be treated as whole human beings.
o Be honest: Share information openly and support alternative solutions or approaches that the patient and their families might appreciate. Use questions to determine how much to say and be mindful of the patient’s energy when speaking with them.
o Listen generously: Take the time to get to know your patient … their fears and hopes.
o Practice self-care: Taking care of your own needs is an ethical imperative.
o Be a beacon of realistic hope: Take your cues from the patient and remember you’re your way of being will be an important part of this patient’s end-of-life experience. What an honour to serve in such a meaningful way.
Twenty-three years after Tracy’s death, I am able to bear witness to my grief in a more holistic and integrated manner. The secret elixir of ‘hope' allowed me to fill the space between what was (the deep sorrow from the death of my sister) and what will be (a more enlightened quality of presence). I see hope as a muscle that I’ve built over time. My hope muscles are ever present and have created a resilience in me that helped me launch Grief Unleashed. Hope lives within my body and allows me to be more present to myself and others. Hope is now the invisible oxygen that has given me a renewed sense of purpose. My hope is that some of what I share brings you comfort.