Molly has kidney cancer. Here she shares her thoughts on why we need to separate hope from health
My name is Molly. I was diagnosed with renal cell carcinoma 20 years ago and had a nephrectomy. By 2013 I had three more tumours and decided not to pursue treatment.
Some friends were talking about being told by doctors that there was no further intervention or treatment that could be offered. I was struck by the strength of the words they used — feeling “abandoned” and cast away with “no hope”.
As a patient attending a hospice I can imagine that for some doctors whose primary work is about saving life and curing (or at the very least minimising) illnesses, such direct conversations are less familiar territory and a real challenge.
Despite some cultural shifts in relation to death and dying there remains pressure from patients and their families to cure, treat and deny mortality.”
I do, however, believe that the cultural climate is shifting, and maybe some patients would actually prefer more directness than they receive.
So, how can doctors tell the truth (rather than everyone carrying on with fruitless and life-consuming interventions), yet still leave patients feeling OK about their onward (if time limited) journeys?
Why this matters to me
I want to move briefly to my personal story.
Several years ago I took a hard look at the treatments (not curative) which were on offer to me:
an operation which I might not survive
possible dialysis to stay alive
I decided to jump off the medical treadmill.
This meant that although I was shocked to be where I was, to some extent I still felt in control.
In writing this piece, I’ve had the chance to re-visit some notes I took down at the time I made this decision:
“My intuitive gut feeling hasn’t changed over these last few weeks.
I need to be careful that the medical opinion doesn’t unsettle me — I want to remain positive, I feel there is a big push to ‘do battle’ and not wave the white flag too soon.
My fear is that having done battle / waged the war / spent time with injuries, as with the young men of war, good time is lost and in some cases there is no further life to enjoy. It is a huge choice to make.”
Following my decision and being referred to a brilliant hospice wellbeing service, the task of focusing on hopes and living well today was relatively easy.
This whole process was assisted greatly by a highly skilled and sensitive palliative care consultant and his part in helping me refine the detail of my forward planning:
Advance Decision to Refuse Treatment
A detailed Advance Care Plan and Preferred Priorities of Care
and, most recently, the ReSPECT form
How can professionals and medics help?
For me, the most powerful idea is that this is a crucial time of my life to be myself or maybe more of myself than I have ever been.
I have witnessed this being a time when people decide to change and live this part of life differently – better in their view perhaps – having reflected on what has gone before.
This is a time when we can still contribute to loved ones, to others, or to society — there is still time to live. Some of us feel that these days and times are very precious and that there is still much to enjoy even though time is limited.
Another of my notes from the time:
“Life isn’t all about cure / treatment / hope in health improvement. Create a space where honest discussions can happen. Thinking about mortality doesn’t make death happen. The hospital can often save your life but the hospice can help you to learn how to live.
Separate out hope from health. We can have hope in many different ways including hope for comfort at the end, being supported to do it your way, knowing those you love will have support too.”
For me personally, there is hope to tidy up loose ends, to prepare myself and those I love, to end my days in a planned way according to my expressed wishes.
It stands for Benefits, Risks, Alternatives to treatment and what happens if we do Nothing?
I recommend both patients and those working with them bear the last part nothing in mind. It might feel initially like nothing to refuse or not be offered any further investigations, interventions or treatments; but in due course that nothing can convert to living in a reasonably hopeful way.
Also, nothing can still include good support and palliative care to help one live the remainder of ones days in a meaningful way — which is actually all any of us have.
If Molly’s story resonates with you, or you want to talk about anything we are here to talk. Call us on 0800 999 2434, email us, or tweet us.