21. Don't talk to the stick
Don't talk to the ninety
year old
Don't talk to the
condition
Talk to the DANCER
Hinweis der Redaktion
Start by establishing credentials. Professional audience. Not a level playing field. But that is what I do, now who I am......
Connected to range of networks. Common factor, my late son Neil. What happened to him affects me, and thus everyone in all the networks – and always will, for good or bad. You are never dealing with just the patient.
Our son Neil – 1973-2009. Diagnosed with a Sarcoma in 2004. Operated on We though it was all over. Asked, “What do you want?” To go to New York. He met a friend, Alison.
Our son, Neil, 1973-2009. Diagnosed with a Sarcoma in 2004. Operated on. We asked, “What do you want?” “To go to New York.” We took him. Met Alison, a friend. They enjoyed themselves. We have good memories. Asked what he wanted and made it happen. Heart of Patient-centred philosophy.
2009. Neil in hospital. Nurse asks same question. To go home (his flat in Preston.) She makes it possible. He died next day – but good death. Where he wanted. Good memories.
Lee – had a PPC. Hated hospitals. When she got pneumonia, taken there on understanding that she would only be stabilised. Paramedics understood. Gave message to ward sister. So it happened. (I drove her to Hospice day-care.)
Tess. My wife took to Day Care. Cancer throughout. V good relationship with consultant.
End – day patient at hospice. Son from NZ + family over. Asked if she wanted a drink. What did she want? Tea? No, beer. “Mother, you’ve never drunk beer in your life.” “I know. Want to try it before I go.” Good memories all round.
Lee. Ex-nurse. Cancer. Day care at hospice. Wanted to go into art room. New carer took chsir away – it’s in the way. Her feelings not considered. She never foirgave the carer.
Brian. Day care. Ex-army. Cancer. Chemo with terrible side-effects. Knew he was dying and coping with it, but not side effects. Consultant wanted more chemo. Brian discussed it with me and refused. Symptoms subsided. Quality of life restored. Died, but had quality to end. Given control. (or perhaps took it!)
Lee again. Knew she was dying. Asked GP what would happen. Wanted reassurance about quality of life. He made incorrect assumptions.
She was livid. Called me to visit so she could tell me.
Neil. Initial diagnosis. 50% chance of surviving for 5 years. We didn't understand. Would he be alive or dead? Non-medical friend said his actual chance was either 0% or 100%. Statistics are valuable to professionals but don't work for individual patients. Empower, don't confuse.
Euphemisms. My GP ( and Neil’s) to me about Neil. I heard, “We haven't found cure yet, but we will.” You know what you’ve said but not what I’ve heard. He was trying to tell me Neil was dying.
DNACPR. Said to us at Neil's bedside. Don't know if discussed with him, or if he heard. Never will now. Still causes us immense pain.
Israeli Hospice doctor on Twitter. Heart of patient-centred philosophy. At EoL patients need highest quality EoL care delivered seamlessly at point of need. Don’t need to know where it came from.
