The value of a little extra time
BMJ 2025; 388 doi: https://doi.org/10.1136/bmj.q2862 (Published 20 February 2025) Cite this as: BMJ 2025;388:q2862
Today my husband wrote me a love letter. Well, if I'm honest, I'm not certain it is a love letter, but I think I can read a couple of “darlings” amongst the scrawly bits I can't quite make out. He has certainly signed his name at the bottom, and when I asked him if the other words were “darling” he grinned that marvellous grin which, over our past 25 years, has always meant everything was just great.
The lines of scribble start at the very topmost edge of the paper, as if they are almost falling off, presumably an effect of the hemianopia we were told to expect if he opted for his third operation for a malignant brain tumour in less than 12 months. Faced with imminent coma and death, and tormented with headache and nausea, some loss of visual field seemed a small price to pay for the chance of a bit more liveable life.
Hope, a most precious commodity
People say how hard it is for me, but all I can think is how hard it is for him. When a grand mal fit came out of the blue one morning last year, the discovery of a right frontal lobe glioma led inexorably to retirement from his much loved work as a GP and altered our lives for ever.
He has changed so much this year, and now I hardly notice the changes. He used to be punctilious about small matters, but I now remind him to put on his seat belt in the car he is no longer allowed to drive. I work the day of the week into our early morning conversation so he doesn’t have the embarrassment of asking. I even find myself getting irritated by his complete disregard for how long it takes him to prepare to go out—when I was the one who used to aggravate him by never being ready on time.
Now, with the postoperative cerebral oedema persisting, hope has nearly failed us all. I shall never forget our caring surgeon’s unfeigned reluctance to be going on holiday and leaving the situation so uncertain. All we can do is wait and see. I’m going to believe it is a love letter, I’m going to believe we have a little more time. I must. A scrap of hope is all we have left.
Was intervention worth it?
The preceding words were written a year ago while my husband was still in hospital. He came home, spent another month with the family, and managed to say “I love you,” before slipping peacefully away, just six days before the anniversary of his first fit a year earlier.
There is much debate today about how far to go with palliative treatment, and sometimes criticism of intervention when there is little hope of recovery. Many may indeed wonder if it was all worthwhile, for so little time. Certainly, it was all very expensive and might not be considered cost effective. Yet intervention bought us a year. A year when for much of the time he felt well, giving us a chance to spend time together, to rediscover one another and to appreciate every day and experience we shared. It was a wonderful gift that I shall always treasure. I don't know whether it would have been worth it for everyone, but it was worth it for us. Thank you, everyone who made it possible.
What you need to know
Sometimes even a little extra life can be important to those living it
Feeling convinced that medical professionals genuinely care makes a big difference
Honest explanations of choices and their consequences give a valuable feeling of having some personal control
Education in practice
How could you best support a patient, and their family, in the final months of life?
What information could you provide to patients and families trying to decide on when, or if, to move into palliative treatment?
Footnotes
Competing interests: none.