Those of you who follow my blog or have read my memoir Chasing Ghosts know that I’m near the end of my life. I’ve already nominated my next of kin and drawn up an Advanced Directive which instructs my care team – whether that’s the hospital, GP practice of palliative care team – on how I wish to die, where I wish to die and what I want around me when I die. My oncologist, my GP and my next of kin all have a copy. I’m surprised not more people have such a document as it’s simple to produce and it really has set my mind at rest.
Last month (March 2017) I saw that a group of organisations, including cancer charities, medical organisations etc, had developed a process for medics to have a dialogue with their patients: ReSPECT, or Recommended Summary Plan for Emergency Care and Treatment. This process is a conversation you can have with your clinician about how you wish to be treated in a future emergency when you’re unable to express your views. It allows you to indicate the extent to which you want to prioritise prolonging your life or to prioritise being comfortable and pain-free.
It hinges on a two-page form, filled in by your clinician, after you’ve had that detailed conversation. The clinician records the specific interventions that you may or may not want, or be clinically appropriate, including being admitted to hospital or whether or not you want to receive life support.
It goes beyond the Do/Do Not Resuscitate form that many people have, and as such I welcome it. I particularly welcome the fact that it’s based on a conversation – but will it be truly patient-orientated? Clinicians still tend to convey the impression they know what’s best for you and are not famous for having death-related conversations. They are, after all, focused on prolonging life. When I mentioned that I’d been sorting stuff out at home, my doctor said ‘Why do you want to do that?’ I know they’re being positive on my behalf but I hope time won’t run out before I’m able to have that conversation.
The ReSPECT process is being piloted in some areas and is now being evaluated. However, health and care communities in other areas can be offered the materials if they join an Implementation Network.
My own Advanced Directive is pretty explicit and is a good place to start that dialogue. Furthermore, my form includes, not only the usual medical wishes, but also how I wish to be treated in the place where I’m dying – the food I want to eat and the music I want to listen to. If you would like to see a copy contact me below and I’ll email you mine which you can use as a template. Alternatively Compassion in Dying also has a pack which can help you draw up your own Advanced Directive.