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Palliative and End of Life Care: Tackling Variations, Eradicating Inequalities
- 2. But this is who I amβ¦..
- 4. β¦.and what do YOU want, Neil?
- 5. What do you want β as a patient and as a carer? To be treated as a person
- 6. GET ME HOME!
- 8. I donβt want to operate in view of your blood pressure and heart, but I will if you want.
- 9. I can change your medication so that you will feel better and more comfortable. Itβs your choice.
- 11. To be listened to βIβll take the wheel chair
- 14. YOUβRE NOT GOING TO DIE. YOUβLL LIVE TO BE 100!
- 15. I JUST WANT TO BE COMFORTABLE, PAIN FREE AND WELL ENOUGH TO SEE MY FRIENDS
- 16. YOU HAVE A 50% CHANCE.
- 18. To be involved in decisions about me
- 20. βWE AIM TO DELIVER PERSON- CENTRED GOAL- ORIENTATED CAREβ
- 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
Editor's Notes
- 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 β and always will, for good or bad. You are never dealing with just the patient.
- Our son Neil β 1973-2009. Diagnosed with a Sarcoma in 2004. Operated on We though it was all over. Asked, βWhat do you want?β 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, βWhat do you want?β βTo go to New York.β 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 β but good death. Where he wanted. Good memories.
- Lee β 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 β day patient at hospice. Son from NZ + family over. Asked if she wanted a drink. What did she want? Tea? No, beer. βMother, youβve never drunk beer in your life.β βI know. Want to try it before I go.β Good memories all round.
- Lee. Ex-nurse. Cancer. Day care at hospice. Wanted to go into art room. New carer took chsir away β itβs 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 Neilβs) to me about Neil. I heard, βWe haven't found cure yet, but we will.β You know what youβve said but not what Iβve 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. Donβt need to know where it came from.
- Final message.