Share Your Story
Hearing about others' experiences can be helpful when dealing with death and bereavement. Do you have a personal experience that you'd feel comfortable sharing with the campaign? If so, let us know...
My husband was only 58. He was admitted to hospital with shortness of breath and blood in his urine. On Monday, he had a scan. We were given the results on Tuesday evening, and it was about as bad as it could get - a tumour that originated in one of his kidneys had spread to most of the organs in his chest and abdomen; it was even inside his heart.
On Wednesday he was sent home with no follow-up and no support system in place. His prognosis was never discussed and he was unaware that he was dying. The ward told him doctors would hold a multidisciplinary meeting and would then contact us by phone to discuss future planning, but they never did. After a few days of hearing nothing, I felt I had no alternative but to telephone someone whom I know personally and who works in the oncology department to beg for help.
The result of this was that my husband was given an appointment at a specialist clinic in a bigger hospital 20 miles away. The consultant he saw told him his case was 'beyond extreme'. He admitted him for investigations; and investigations, painful and undignified, are what he spent his last days on this earth enduring. He died four days later - 16 days after receiving his diagnosis - alone and far from home. Until he worked it out for himself on that last afternoon, he never understood that he was going to die.
I, on the other hand, understood from the moment we were given the diagnosis in the first hospital that my husband was terminally ill. It was the trained professionals who seemed not to understand. But I could not talk to my husband about what was going to happen, because no doctor had told him, and it is not the place of a wife to tell her husband something like this. He seemed to think that he was going to be pretty ill for a while but that, ultimately, he would survive. The stress was enormous.
All I wanted was for someone to give us the true picture, and discuss palliative care. If my husband had to die at the relatively early age of 58, I at least wanted him to be at home, with me, surrounded by the people and things he held dear, and able to say whatever he wanted to say before he died. But the hospital failed to recognise he was dying. They seem to be completely misled by the fact that right up until the last day he was mobile, pain-free and cognitively unimpaired. Unfortunately, none of that meant that he wasn't dying.
I'm not going to say that my husband's death was the worst possible death; there are many that are worse. But it was much worse than it needed to have been. If only his case had been handled properly after the diagnosis was made, he could have died peacefully at home after making the best use he could of the time he had left. There is so much we could have said to each other that we never said, but could have said if things had been different. We will never say them now. They will remain unresolved forever. I don't think I will ever come to terms with that.
The Dying Matters Coalition is led by the National Council for Palliative Care,
the umbrella charity for end of life care in England, Wales and Northern Ireland.
Freephone 08000 21 44 66