COMMISSIONING GOOD QUALITY END OF LIFE CARE:

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1 COMMISSIONING GOOD QUALITY END OF LIFE CARE: Involving patients and carers Barbara Pointon MBE Former carer, Ambassador for Alzheimer s Society and Dementia UK and member of several dementia advisory committees barbara@pointon.name

2 Four red threads Why it s important to involve patient and carer in the process of commissioning End of Life Care for any individual. Ensuring the carer is treated as a partner in care in all careplanning and decision-making in any setting. Commissioning practical advice and emotional support for the carer. Support for the carer when the caring stops ****************** In dementia, everyone is an individual the patient and how they are coping; the carer and whether they are coping (or not); the social setting. All care and support has to be tailored.

3 1. Two scenarios when involving the dementia patient in the commissioning process (a) the patient is dying from another condition but dementia is also present and (b) the patient is dying from the physical ravages of dementia. **************************** The presence of even mild dementia can complicate the giving of care for their main condition Especially for the elderly, commissioning End of Life Care needs to be dementia-sensitive and staff aware of extra difficulties: Communication Visuo-spatial perceptual problems Not the usual kind of forgetfulness Living in the past

4 2. Involve the carer (or significant other) as a true partner in care This applies to all settings home, hospital, nursing home, hospice. The Triangle of Care carers included. A Guide to Best Practice for dementia care (Carerstrust & RCN 2013) Form a triangle of trust between patient, professional and carer. Carer involvement is enshrined in the Mental Capacity Act and the new Care Act But many carers don t know they have that right. Who should inform them?

5 2. Involve the carer (or significant other) as a true partner in care Patients with advanced dementia lose their speech and understanding of speech, so the carer s role takes on that of advocacy. Planning for quality end of life should begin very early, while the patient still understands. As part of a GP s commissioning, recommend giving a copy of NCPC s Difficult Conversations to all carers early on. Becomes a check-list for Health and Social Care professionals to ensure that the patient s choices are being followed. When does palliative care begin in advanced dementia?

6 3.Commissioning practical and emotional support for the carer For End of Life Care at home there are 4 essentials: The right equipment for the job Access to expert nursing advice and support for advanced dementia care Two people to deliver several aspects of the care (e.g. hoisting): good quality, well dementia-trained paid staff to assist. Ability to offer care beyond the physical Care at home is not for the houseproud!

7 3.Commissioning practical and emotional support for the carer The right equipment and products (commissioned by GP, Community nurses, Occupational Therapist) One size does not fit all need to commission individualised continence products of the right size, absorbency and snug fit. Catheters are not recommended in dementia. Visio-spatial problems when changing the patient on the bed - and the solution of a standing hoist Had to wait 4 months for the hoist. When something is needed, it s needed now!

8 3.Commissioning practical and emotional support for the carer Access to expert, tailored dementia nursing advice at home All doses of medication (for any reason) should be titrated down in line with the severity of the dementia. Identifying pain. Malcolm could no longer screw up his face or point to the site of the pain specialised pain scales required. Swallowing problems. Slow, patient hand-feeding. Cool thickened drinks. PEG feeding is not recommended in dementia equal chance of choking on regurgitation. Huge temperature spikes - not necessarily a sign of infection. Most probably the brain losing control of another autonomic function 16 different professionals were called in; I had to co-ordinate it

9 The Web of Care (Last 7 yrs) Care team 2 live-in carers (alternating weekly) Replacement carer [Some night nursing Health] Emergency carers & Barbara Out-of- Hours Doctors/ Paramedics Dementia Advisory Nurse? Social Worker Consultant geriatrician GP Malcolm & Barbara District Nurses Continence Adviser Speech & Language Adviser Dietician Community Dentist Occupational Therapist Direct Payments Team; Rowan Org. Alzheimer s Soc outreach worker Oxygen service Wheelchair Service Alternating Mattress technician Physiotherapist Equipment Service

10 3.Commissioning for the long-term carer s own needs Regular breaks from caring at one point I was doing 120 hours a week on duty or on call Bringing in a replacement for me the same person each time - worked best. Malcolm became terrified of going anywhere outside home. Regular health checks for carers we re good at neglecting ourselves! Ensuring well-trained domiciliary staff and continuity from Agencies. It adds to a carer s distress if someone proves to be unreliable or not up to the job. The carer and family are well placed to offer care beyond the physical

11 COGNITION, ABSTRACT THINKING, KNOWLEDGE, FINER SKILLS, SOCIAL AWARENESS CONTROL OF BASIC PHYSICAL FUNCTIONS PSYCHE, 5 SENSES AND EMOTIONS ESSENCE/ SPIRIT

12 Carer, family and friends can meet patient s sensory and psychological needs The five senses: Sight not looking at the same bit of wall all day Hearing continue to talk even if no response. Human voice is deep in the psyche. Favourite music. Taste patient feeding by hand= social interaction Smell favourite perfume, aromatherapy Touch the most important of all The need to feel safe and cherished

13 Commissioning good care in the dying phase Malcolm came close to dying several times in the last year primitive instinct to survive? (see Gold Framework graph) Swallowing went. Signs he was weary and wanted to let go Diary entry I hope when the end comes it s not too messy No aggressive interventions Pneumonia set in declined GP s offer of sending to hospitaltoo terrifying and noisy. Kept at home, letting nature take its course. Relatives to be advised of risk of move to hospital? I looked round for emotional support not forthcoming Half dose in syringe driver He died peacefully a week later, physically cradled by family

14 4. When the caring stops Feelings of relief and release got in the way of grieving Delayed bereavement shock Bereavement counsellors reckon that for long-term carers, there s one month delay for each year of caring. 16 years of caring; 16 months after Malcolm s death. Whose radar should we be on? On reflection, commissioning good quality End of Life Care at home depends on having one key person advising and coordinating close partnerships between Health and Social care professionals, the voluntary sector s specialist knowledge and the family carer who delivers the majority of the care. Thank you for listening to me.

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