Recent newspaper reports suggest that some NHS hospital patients are dying needlessly and, worse, relatives are being left unaware of the causes. Here is a example that may save the life of your loved one. Tragically, the information came too late for one family. Barry Ward tells the story.
We thought Christine had beaten death but it was not to be. We should have known that this wouldn’t happen, even in one of the world’s great hospitals, even though my wife of 43 years had already won the battle against a brain tumour, navigating the long, agonising process with flying colours, according to the medics at Addenbrooke’s Hospital, Cambridge.
Her valiant fight belied her age which is why the second process, a bone marrow transplant, was offered as a form of insurance against a recurrence. But second time lucky didn’t apply in this instance. She died in the intensive care unit from a massive internal haemorrhage caused by a rare infection. In truth, we discovered later, the odds were stacked against her from the start.
When the brain tumour was identified in May 2014, Christine was 69 years old but could have passed for someone a decade younger, still vivacious and young at heart, still a source of joy to me and the many vulnerable elderly to whom she was an angel in disguise.
I was the senior by 14 years and we had tacitly assumed that I would go first. But on 18 January 2015 she bled to death as the family watched, distraught, disbelieving. It was an ironic cruelty that the lady who had spent most of her adult life helping others was beyond help when she needed it most. Fate can be a cruel foe.
Two long sessions of chemotherapy had eradicated the tumour and five months later the first battle had been won. Relieved, we brought a happy Christine home to Oakham in Rutland, to recuperate and gather strength for the next campaign, still three months away. Now I wish she had declined the offer. We could have lived with the consequences. It would have been worth the risk.
How this tragedy happened and why should serve as a warning to those who find a loved one in a similar situation.
Chemotherapy is the preferred treatment for such a brain tumour, a lymphoma of the central nervous system (CNS). The down-side: the chemo destroys not only cancer cells and the white blood cells which fight infection, but also the body’s ability to produce stem cells, the seeds from which new blood cells are germinated.
In short, the transplant process to rejuvenate the supply of blood cells involves extracting and freezing the bone marrow, which is found in the blood and is the body’s main defence against infection. Then follows further chemotherapy to ensure the body is totally free of cancer cells. After recuperation, the now-sterilised bone marrow is returned into the bloodstream to re-generate the stem cells.
It was made to sound a simple process that had become commonplace at Addenbrooke’s. But our not knowing about the down-side proved a desperate oversight.
In a bone marrow transplant the balance of risk, the number of patients lost in the process or the immediate consequences of treatment, is five per cent. There’s more: the overall survival rate among such patients is 70 per cent after five years. In other words, even where the transplant is adjudged successful some three out of ten patients will die within five years.
On a positive note, seven of every ten patients will survive longer than five years, although some may relapse later. Doubtless each of them will be grateful for the rest of their lives, whatever the duration. They had won the bet, although they probably would not regard it as such.
Despite the myriad complications, Christine’s bone marrow transplant was completed just before Christmas 2014 and at first all appeared well. Then things started to go wrong and she was admitted to the Intensive Care Unit on Christmas Day. From then until mid-January she was sedated and virtually unconscious, at death’s door.
The major problem was attributed to a severe infection of the gut known as candida fungal. This was a contributing factor to a massive internal haemorrhage which, exacerbated by low immunity caused by the chemotherapy, would prove fatal.
Some months later, in an interview with the consultant in charge of her case, I referred to the remarkable improvement Christine experienced after we had been warned on 12 January that she had only 24 hours to live, that nothing further could be done for her, that the bleeding would prove terminal because, being a seepage and not a leak, it couldn’t be stopped.
But the following day she showed signs of recovery, as she did the next day, and for several days more. Miraculously, Christine appeared to have beaten death.
I discovered later that her recovery was attributed to a coagulant drug which halted the bleeding to the extent that when I saw Christine on 17 January she appeared in a better state than for many months; she was conscious, vibrant even, smiling and optimistic. A nurse spoke of “perhaps moving Christine into an armchair tomorrow, to have a little gentle physiotherapy….” She had been immobile for weeks; I was elated at the suggestion, at the transformation.
And yet eight hours later she bled to death as the family watched, devastated. It raised the most obvious question: could not this drug have been used again?
The consultant identified the drug as a super-clotting factor known as VIIa but said that its effect wears off rapidly, that it may stop the bleeding but not the underlying cause of it. Worse, he said, it could prolong the dying process by its temporary stoppage of the bleeding but its inability to reverse the underlying problems affecting other organs.
“The issue here was not that the VIIa had worn off but that there was a new bleed. This could not have been predicted, but when it did happen it was another indicator that the underlying problems (both in the gut and in other organs) were very far advanced and were proving refractory to treatment.”
Plainly, then, this was a battle that Christine was never going to win. As I suspected, the odds had been stacked against her from the start. I was lucky to have had that one last day with her, to see her at something approaching her normal self, before the dreadful affliction took its final toll.
Here’s the important factor: I then raised the subject of relatives being present when the bone marrow transplant and its down-side factors were considered.
In Christine’s case, I gathered, it had been discussed at one of the key outpatient appointments with the consultant. I was present nearby, having taken her there as I did for her many hospital appointments, but it was one of those times when Christine insisted upon seeing the consultant alone. That was her style: a highly independent lady, she would not have wanted me to hear details which might have caused concern. The consultant wrote:
“Perhaps it would be helpful as a positive message for other families if you could also emphasise how useful it can be for others to attend these consultations, although of course the decision as to whether this is appropriate must always rest with the patient.”
It had been Christine’s right, of course, as that final phrase states, but in this case it had a catastrophic effect. It also endorsed my suspicion that Christine had either feared the worst or had a premonition.
In family discussions, the five year factor and its 70 per cent survival rate had been raised, but I was unaware of the five per cent failure rate in the transplant procedure. I certainly would have been more influenced by what I considered a startling statistic regarding mortality and would have tried to dissuade Christine from accepting the transplant on the grounds that the tumour only may have returned after four or five years and it only may have proved terminal after further treatment. Indeed, the consultant had said that such a relapse would affect only 50 per cent of patients who chose not to accept the transplant.
So at the worst Christine could have enjoyed another four or five years of life and would have been prepared in the knowledge of a potential relapse. As it transpired, she lived for only a few more agonised months and met an awful end. She was also desperately unlucky: the candidal infection that contributed to her demise was quite uncommon. As the consultant wrote me in response to one of several later questions:
“A severe disseminated candidal infection, as here, is not common. We rarely see it: I can think of only two patients who have had such an infection in the last two years.”
The moral of this story: pause, contemplate, discuss, reach agreement: don’t let your loved one make the decisions alone. Insist upon attending meetings with the consultant in charge. Ask questions; they’ll be welcomed. Establish the odds of success and failure, of life or death.
You’ll have only one chance. Life is too precious. Don’t risk it.