When we think of hope and relate it to illness or disease, a lot of people would directly associate that with hope of a cure or recovery and of returning to full physical wellness. However, in the palliative context, hope by necessity, needs to take on a very different form.
First though, we need to explore hope on a deeper level. According to dictionary.com, the definition of the word hope is this : the feeling that what is wanted can be had or that events will turn out for the best. And of course, it is wholly subjective – what we want or consider to be the best could be very different to the perspective of someone else.
Hope is one of those fundamentals that is absolutely integral to our human existence, yet it is completely intangible and as just mentioned, totally subjective. Without hope in some form, even minute, there is a sense of worthlessness of existence, that there is no point in continuing.
Hope feels to me to have a deeper meaning for the self than the term wish. Hope feels more soulful, more personal and more intimate. Hope feels quieter in its intent and more peaceful.
And then you hear people speak of false hope. Personally, I reject the concept that false hope exists. The term false hope is solely based in judgement and it is external to the experience of the individual who is living with the hope. I don’t believe in false hope, because the individual with the hope still has hope. They may have some doubts around the hope and their hope may be the tiniest glimmer, yet hope still exists as a truth for that individual in their world. False hope says that the belief and hope that someone has is not worthy of their time and energy. False hope discredits and disallows the individual the sovereign right of the truth of their individual experience. False hope seeks to condemn the individual for having any hope in the first place. False hope is disempowering and I believe it is a term which is disrespectful. There feels to me to be an arrogance about the term that says, “I know better than you and you are wrong.”
Consider then, hope in the palliative context. If we think back to the original scenario of hoping for a cure or recovery, then we face a challenge when that possibility is essentially removed when a diagnosis of terminal or life limiting illness is given. If there is no hope for a cure or recovery, then how can there be hope? What form can hope take?
Hope in this context takes on a different appearance, it evolves to suit the scenario and the individual. Hope may now look something like this :
- Hope to live long enough to be present for a special event eg, wedding, birth, anniversary, birthday etc
- Hope to have symptoms well managed with minimal discomfort
- Hope to tick off some bucket list items
- Hope to see some special people before it’s too late
- Hope to leave a legacy of some sort
- Hope to create a good dying and death experience, as defined by the individual
- Hope to not leave a mess behind for loved ones to resolve
- Hope to resolve any unfinished business
- Hope to enjoy simple pleasures
- Hope to experience our faiths and beliefs about what comes after our physical death from a religious/spiritual perspective
- Hope that an alternative course of treatment will provide some benefit
- Hope to know peace, happiness, joy and laughter in the time remaining
- Hope to organise all legal concerns in a timely manner
And on, and on the list continues.
Hope loses none of its power and can in fact provide the catalyst for achieving something specific. I think in this case of my own Mum. When she received her terminal diagnosis, her first great-grandchild was already on his way and was due in 3 months. Her hope was to see that child born before she died, so she did all that she needed to, to ensure that that happened. She had chemotherapy when she had previously said that she never would. There was a determination in her to hold this babe. And she did. This precious little boy had to do his part in the process by coming 4 weeks prematurely. Mum got to hold him within a few days of his birth and less than 2 weeks later she was gone. I have absolutely no doubt that her hope to see the babe safely delivered into our world was one of the drivers for her experience as she deteriorated so very quickly after she had held him.
Hope is a powerful force in the dying and we need to allow them to define hope in ways that are meaningful for them and their journey. It is not for us who are spectating on the sidelines to decide what does and doesn’t have significance for someone else’s dying and death journey. Hope is personal, hope is intimate and the responsibility for the definition of hope is solely the domain of each individual sovereign being.
Peace & blessings, Sharon