Baroness Campbell: Believe me, I absolutely love my life

by Olga Craig, The Telegraph, 12 July 2009
Baroness CampbellA 2009 article when Baroness Jane Campbell was a leading figure in the defeat of an assisted suicide bill in the United Kingdom’s House of Lords. (She was also a leading figure in the 2015 campaign that defeated another assisted suicide bill in the House of Commons.)

Baroness Campbell was born with spinal muscular atrophy, and has repeatedly overcome prejudice, discrimination and the assumptions of others about what is ‘good’ for her.

Lady Campbell was lapsing in and out of consciousness. ”I was panicking, I couldn’t breathe, I couldn’t even swallow,” she recalls. ”I was gasping for air while all around me was a blur of doctors. I knew I was in hospital and I knew I needed help fast. I had been through this so often before. But this time it was different. I was struggling to breathe and stay conscious but, even so, I knew things weren’t going the way they should: the doctors weren’t acting quickly enough, they were leaving it too late. I knew the procedures. Didn’t they? And I was scared, very, very scared, terrified that I was going to die.” 

Seriously ill with double pneumonia, Lady Campbell’s husband Roger had known she needed medical attention quickly. There wasn’t time to take her to St Thomas’ hospital in London, where she was usually treated: instead he drove her to a nearer accident and emergency unit. Once inside Lady Campbell had struggled to stay calm. She knew, she told herself, exactly what to expect. Or thought she did. 

At least once during each of her 50 years, she has been rushed to hospital at the brink of death with acute respiratory problems. Born with spinal muscular atrophy, a degenerative disease that means she is confined to a wheelchair and immobile without help, serious chest infections, she knew all too well, could be fatal. But here, in a strange hospital, the doctors were not familiar with her condition – and already they were deciding that hers would be a case of ”do not resuscitate”. 

Check any medical book, she says crisply as she sits in the afternoon sun in the secluded garden of her Surbiton home. ”It will tell you that, with my condition, being unable to breath and swallow is pretty much endgame. I know those doctors were trying to be kind, wanting to do what they thought was best for me, to ease my suffering by ending my life. But it wasn’t what I wanted. And in my heart I knew that, because these doctors didn’t know me, they would make assumptions. Assumptions that were utterly wrong.” 

Which is exactly what they did do. As the baroness’s breathing grew increasingly shallow, doctors gently told her husband: ”We don’t think we are going to be able to pull her through. We don’t want to put her on a ventilator because the possibility of weaning her off it will be very difficult. And she wouldn’t want to live on a ventilator, would she?”

Baroness Campbell considers herself very, very lucky. Her husband was able to tell the medical staff what his wife could not: that she already spent every night on a ventilator. And yes, she did want to be resuscitated. Her condition may be degenerative. But she was a fighter, and she wanted to live. To the hospital’s shame, he was forced to show doctors photographs of Lady Campbell receiving an honorary doctorate in law from Bristol university to ”prove” the quality of her life. 

”What frightens me about that night is that I knew these doctors were doing what they thought was best,” she says. ”Doing what they thought I would have wanted. But if Roger hadn’t been there, there would have been no one to tell them my wishes.

Click here to read the full article.

Click here to read a 2 May 2016 Telegraph article revealing that an audit of 9,000 dying patients in England found that 20 percent had a “do not resuscitate” instruction placed on their files without them or their families being told.

Prof Sam Ahmedzai, chairman of the audit and author of recent guidelines on care of the dying, said: “When a decision has been taken [not to resuscitate], it is unforgivable not to have a conversation with the patient – if they are conscious and able – or with the family.”