It's only in hindsight I can see that Pete, my husband, wasn't going to survive. Whether it was alternative treatments or getting him to the right doctor or hospital, I was 'running on empty' frantically trying to find ways of helping him stay alive.
Pete was also in debilitating pain so my other focus had been to try to help alleviate the intensity of it by being in constant contact with doctors who specialized in pain management.
What was missing in those last few months was any kind of acceptance that Pete wasn't going to make it. He was stoic in his attitude and refused to discuss any thoughts of anything but a successful outcome. And the doctor's gave him every reason to believe that was going to happen.
Yet I was a neurotically bouncing around like a bumper car hitting anything that looked like an 'alternative cure' or a 'breakthrough treatment'. In that few, frenetic months we missed the opportunity to come together, join hands and find peace in the love we had for each other. Instead it was one big stress ball!
I understand that any doctor telling his or her patient that no treatment was going to prolong their life must be an extraordinarily difficult thing to do. I'm not sure I could do it. But looking back I think that would have been best for Pete and us as a family.
As it was we didn't have an opportunity to say goodbye. We weren't able to work through the sorrow and come to a quiet acceptance. There were many things left and unsaid and so many regrets for not being able to make Pete's last few weeks more gentle. There was no grace in his death.
Right up until the last 12 hours, the doctors were setting out the next treatment plan. Pete died on the Sunday night and the next treatment plan was due to kick off on the Monday morning. I was truly grateful for the doctors making an all out effort to save him until the very last hour but at the same time it may have been better all round if we'd foreseen that Pete wasn't going to make it.
No one can predict a death - that's God's work. But perhaps the NHS could implement a policy change to empower the consultant to inform the family of the chances of survival or when the next round of treatment is not going to help the patient.
If that's deemed too harsh, perhaps the family could take a decision as to whether or not they want to know the bottom line (much in the same way that there's a policy to ascertain whether or not the patient wants to be resuscitated.) That would at least single out people who definitely do want to be told whilst also cutting down on precious resource.
To continue with an unforgiving treatment plan when the chances of increasing survival time or quality of life are slim could be seen as cruel rather than kind. As NHS trusts have to cut back on budgets, this maybe a good time to act.
Of course it's clear how designating a patient as terminally ill is easy in hindsight compared to making a judgment on the prognosis ahead of time. But it also seems that medicine is becoming so refined and medical equipment so endowed that for any doctor predicting death it's becoming increasingly difficult.
In fact, it could be argued that these advances in medicine are a victim of their own success. With doctor's prescribing ever more radical treatments in the hope of saving someone's life that would have - some years ago - been diagnosed as terminally ill, there has also been a distinct increase in NHS spending which has to include the capacity to deliver these treatments.
It transpires, last week, that nine life-changing medical treatments (including children with cystic fibrosis) have been put on hold to fund a controversial HIV treatment. Instead, can't the NHS look at other ways to increase resource by eliminating extra treatments that are, in all honesty, not going to make any difference?
Of course, I'm talking from my own point of view and Pete's not here to put forward his perspective and, after all, he was the patient. Still, I wish we'd had time, even one day, to be together with our children to be still and appreciate the togetherness knowing that this opportunity would not come again, share beautiful gratitude for each other and laugh and love for the last time.
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