Living with a terminal illness

Jenny Carruthers is living with terminal bone cancer. 10 years ago, her partner died of the same condition. Jenny was there to help him through the end of his life and, despite the brilliant care he received, does not want to have to suffer the same pain he did. She told her story to James Tytko...

Jenny - My cancer was diagnosed as terminal three years ago and I've had a chequered journey. I've been a medical professional, and I've cared for my partner through his terminal illness, so I have seen different sides of the debate. I think it is very different when you look from a personal perspective. The debate as an abstract, when it's about ethics, is a really wide one, a really important one. But your perspective changes when it becomes personal. And for me, watching my partner, we had amazing palliative care help, but there were things they couldn't do and it was enormously difficult for myself. I had young children at the time. Hearing him in agony and being unable to help... they couldn't really mitigate his pain. His cancer spread to his bones, which is the same spread that I've got, so I kind of understand where I'm heading and the potential for me to endure the kind of pain that he had. We're on different treatments and my current treatment is amazing, but I am vaguely aware of how difficult it might get, as are my children. And the options for me are limited: either I endure what he did or I leave my children and go abroad and find a little bit of peace earlier, or think about other options. None of them are very palatable.

James - You speak, Jenny, on experiences that are unimaginably difficult. This built on experiences, you mentioned, your time as a medical professional yourself, providing this sort of end of life care for other patients? What are your memories of treating those people?

Jenny - Yes, I worked in an acute gastro ward as a carer, so it was very much hands-on patient care. Some of those patients were at the end of life, they had very serious gastro problems, and it was very difficult for families coming in. You've got six patients in a bay, so there wasn't a lot of privacy. You can make them as comfortable as you can, you can't always give them the privacy of a side room. Understanding that there are other patients that can hear them, that potentially are in a similar position, knowing that that's somewhere their illness might take them as well, is difficult for everyone. Obviously, I'm not a doctor, I don't administer medicine, or I didn't, but asking people to do things, asking people, is there anything else that we can provide and knowing that, really, within our system, there isn't anything else that you can do to alleviate that pain. It's very wearing, very emotionally tiring for everyone who provides care. Our system has limitations and if we could change the law, if it was possible, it would give people more dignity. Not to be able to make the choice personally, to do that for myself or for my partner to do that for himself, it feels unbalanced and it feels like we have to give people another choice.

James - You spoke of some of the shortcomings when it came to some of the care that you were able to provide, or the NHS was able to provide, in contrast to the very high praise you had for the palliative care received by your partner. Is your point here that, obviously we'd love to be able to give the best palliative care to everyone, but regardless of that, there are still some instances where the most sympathetic option is to enable some sort of assisted dying?

Jenny - Yes, that is my belief. At the moment, our system doesn't have every answer and sometimes chronic pain isn't able to be controlled. It just seems that there are kinder ways that we could apply the law and that, whilst our current palliative care tries really hard to cope with all situations, it can't. If the situation were changed, we could be more humane and people could find more dignity at the end.