I am often asked how to go on caring for a loved one when there is no further hope for cure. There seems to be the interpretation that to give up further treatment means to abandon all hope. When all treatment options have been exhausted and a cure does not appear possible, loved ones report feeling guilty and angry that they are giving up hope. I believe that when a cure is not possible, we can continue to care and hope. But we reframe hope, and focus on those things that are realistic and meaningful to hope for.
You do not have to abandon hope. We hope for the future, whether that future is the next minute, day, or year. We are taught, trained, and reinforced to look forward and beyond this moment, and yet, as I trust you have discovered, it is this moment that turns out to be the most precious. We hope for each moment to be meaningful.
In the absence of cure, we can hope for compassion, care, comfort and intimacy. We can provide those ways of being with our loved one. We can advocate that the healthcare team responds in those ways and make sure that our loved one experiences those elements of hope at the end of life.
None of us need to “resign” our energy, hope, and courage because our life is limited. We all live under the reality that life will end; we are all vulnerable; we all live with limitations. And yet we do not crumble under the reality; instead, we use this universal and inevitable reality to motivate us to wake up, be fully present, and love despite our vulnerability.
Embracing hospice, and what it can offer, does not mean we let go of hope. Hospice is a way of living that focuses on changing the experience of living with a terminal illness. Hospice care emphasizes meaningful days, weeks, and months, in order to ensure comfort, dignity and choices according to one’s values. Letting go of the hope for a cure does not mean that we have nothing to hope for. We hope for love, comfort, intimacy, and to make a difference.
The end of curative treatment does not mean the end of care. When a person chooses hospice care they are choosing palliative care, for both themselves and their loved ones. Palliative, or comfort, care means that an interdisciplinary team concentrates on affirming life and the person’s values so that they can participate fully on those things that bring the most meaning. Bringing in a team of professionals includes physicians, nurses, social workers, and pastoral counselors to provide a continuous cycle of care…this is the opposite of giving up hope!
As loved ones, caregivers, and patients we do not have to stop fighting. But instead of fighting against something (illness), perhaps fighting for something might make a significant difference in how our loved one and we experience this most important time together. Fighting for love might mean that we redefine hope at the end of life. The doctors may not be able to offer further treatment but we still have choices; having choices means you have power and hope. Despair comes from the resignation that you do not have any choice at all. Count your choices: for attitude, presence, peace, thoughts, actions, and love.
Our resolve to hope for instead of fighting against may be just the change in perspective that provides the comfort, peace, and presence that will matter. As painful and challenging as this time is for both patient and loved ones, sharing an abiding presence of love can transform this time into the richest and most intimate time in a relationship.