“There’s nothing more we can do for you. Go home and get palliative care.” That’s probably not the best way to tell someone that the treatment isn’t working, but that’s how one consultant chose to inform our son, Neil, aged 35, that he wasn’t advocating any more chemotherapy for his sarcoma. Not only was it untrue – treatment could have done a great deal to improve his quality of life, but it also assumed Neil understood the term “palliative”. This led to him refusing to seek help which would have led to much better pain management.
Nobody told us that our son was dying – not explicitly anyway. We didn’t hear the truth behind the euphemisms because we were in denial. But when he was in hospital and a nurse asked him what he wanted, his reply, that Neil wanted to go home, enabled him to die where he wanted, in his own flat, with his family and his prized vinyls and books around him. Our last memory is of a good death. That is immeasurably important to us.
Neil was given the chance to say what he wanted very near the end of his life. When is the right time? Whenever the person is ready to discuss it. I really hope we can encourage a society where such conversations are seen as natural and healthy.
If they have such conversations, doctors will sometimes find that the right thing to do is nothing. My wife Dorothy used to take Tess, a woman with terminal cancer, to day-care. Tess had a wonderful relationship with her consultant, so when he told her the cancer was spreading and offered her surgery, she knew him well enough to see that he thought she might not survive it. He also suggested another option: a change in medication. “It won’t prolong your life,” he told her, “but it might improve the quality of it. It’s your choice.”
She chose the medication and lived to enjoy a two-week visit from her son from New Zealand, going shopping and taking him for meals at her favourite restaurant.
Another acquaintance with terminal cancer was very relieved when I suggested that he had the right to refuse another course of chemotherapy which his consultant recommended. The horrendous side-effects disappeared and he was able to enjoy most of his last few months.
Sometimes treatment will be a good option in the later stages of cancer, sometimes it will not. For me, the issue is about empowerment. It’s about more than persuading professionals to be patient-centred. It’s about professionals giving patients and family/carers the knowledge to make their own decisions and the power to involve themselves in meaningful discussions. It’s accepting that a good death can be a success. Such empowerment leads not only to a better death, but to good memories, which can help the path through bereavement enormously.
Tony Bonser’s son Neil died in 2009. Since then Tony has become a writer and speaker on end of life issues, a trustee of the National Council for Palliative Care and a local champion for the Dying Matters coalition in the UK.