My future wishes: Advance Care Planning for people with dementia

Beverley Marriott is an Advanced Nurse Practitioner working in the Birmingham community healthcare foundation trust. She is also a King’s College Older Person Fellow. She tweets @bevbighair

The “My future wishes: Advance Care Planning (ACP) for people with dementia in all care settings” document was recently published by NHS England, Dementia Team and End of Life Care Team.

Advance care planning (ACP) is a vital part of personalised care planning. This recently published document acts as a resource to support clinicians and practitioners who provide health and social care for people with dementia. It aims to ensure people living with dementia can develop an ACP through initiating conversations with their supporting clinicians and/or loved ones. It aims to offer a consistent standard of support for patients diagnosed with dementia using ACPs that are developed in partnership with patients and families.

Drug burden in older people approaching end of life

Dr. Denis Curtin is a specialist registrar in Geriatric Medicine in Cork University Hospital, Ireland. His paper Drug consumption and futile medication prescribing in the last year of life: an observational study was recently published the Age and Ageing journal.

The vast majority of older adults are admitted to hospital in their last year of life. For many of these people, hospitalizations are frequent and prolonged.

We reviewed the medical records of 410 older adults who were admitted to our hospital in the year prior to death. The median number of days spent in hospital was 32. While in hospital, patients consumed an average of 24 different medications. One-in-six patients consumed 35 or more individual medications. When discharged home from hospital, patients were prescribed an average of 2 unnecessary or inappropriate medications.

Where and how would you want to spend your last 1000 days?

Premila Fade is a Geriatrician with an interest in medical ethics and end of life care. Here she discusses BGS’s Living and Dying Well with Frailty event which was held on 6 March in London. She tweets @premzf 

If you were an older person living with frailty where and how would you want to spend your last 1000 days?  It is often difficult to accurately predict prognosis for older adults living with frailty and they have different needs at the end of life to younger people.  Traditional models of specialist palliative care do not always meet these needs or those of the carers and family supporting them.

What makes frailty different from other conditions at the end of life is that there can be prolonged periods of relative stability and then a potentially mild illness/insult causes a significant or catastrophic deterioration. This acute deterioration often triggers the conventional response to crisis – 999, ambulance to ED, investigations and the commencement of invasive medical treatment.

Palliative care provisions are not meeting the needs of an ageing population

A commentary published today in Age and Ageing, the scientific journal of the British Geriatrics Society, warns despite the fact that frail older people with multiple illnesses and end stage dementia are the most rapidly growing group in need of palliative care current provisions are not aligned to meet their needs.

The authors of the commentary noted that current projections indicate that between 25% and 47% more people may need palliative care by 2040 in England and Wales. A high proportion of these people will die following a prolonged period of increasing frailty and co-morbidity including cancer, but also other long-term conditions such as heart failure, chronic obstructive pulmonary disease, diabetes or renal failure.

Using population sub-segmentation to promote tailored end of life care in later life

Professor Martin Vernon is National Clinical Director for Older People and Person Centred Integrated Care at NHS England. He tweets @runnermandoc. Dr Dawn Moody is Associate National Clinical Director for Older People and Integrated Person-Centred Care for NHS England. She tweets @Moody_D_K. They will be speaking at the BGS Living and Dying Well with Frailty event today. Follow the conference via #bgsconf

Frailty is an especially problematic long term condition characterised by declining intrinsic capacity to deal with stressor events such as acute illness or physical accidents. When severe it significantly increases personal annual risk of reaching end of life. While occurring alongside human ageing, not everyone develops frailty and it is not solely confined to older people. NHS England estimates 20% of the population aged 90 and over remains fit and are therefore likely to be fortunate in ageing well. Conversely we estimate that up to 25% of people aged 65 to 69 are living with mild frailty in England which compared to their fit peer group places them at twice the annual risk of reaching end of life.  A further 5% of this age group is estimated to be living with moderate or severe frailty.

“The Emperor’s New Clothes”

Professor Martin Green OBE has had an extensive career in NGO development, both in the UK and internationally, and is Chief Executive of Care England, the largest representative body for independent social care services in the UK. He will be speaking at Living and Dying Well with Frailty event on 6 March. Follow the conference on the day via #bgsconf

We have now got a Department of Health and Social Care, what a difference that is going to make (I said sarcastically). With increasing regularity, the Government seems to think that messing about with the headed paper is a route to change. How much evidence do they need that changing titles and rejigging the logos is not going to deliver the transformational change that is required in order to deliver the route map to integrated services. If we had spent one tenth of the money we have spent on new titles, new structures and new logos on culture change, we would be in a far better position than we find ourselves today and the integrated services that citizens are crying out for might be a more attainable goal.

Spring Speakers Series: Are rules of thumb the answer?

Nathan Davies is a Senior Research Fellow at University College London focusing on care for people with dementia towards the end of life and supporting family carers. In this post he talks about his upcoming talk at the BGS Spring Meeting in Nottingham on his work developing rules of thumb for providing care towards the end of life for someone with dementia.

Can rules of thumb help manage uncertainty and the challenges facing practitioners caring for someone with dementia at the end of life?

We know that caring for someone towards the end of life can be a rewarding and intimate experience with that individual and those close to them. However, unfortunately for practitioners it can also be emotionally tough and challenging. This is particularly the case when caring for someone with dementia towards the end of life.

Is this your first time?

Dawne Garrett is Professional Lead for Older People and Dementia at the Royal College of Nursing (RCN) Eleanor Sherwen is Professional Lead for Palliative and End of Life Care, and also works at the RCN. They will be delivering a workshop at Living and Dying Well with Frailty Meeting on 6 March in London. Please note this meeting has now sold out and there will be no on site registration. To join the waiting list please email registrations@bgs.org.uk

Approaching end of life care discussions with the patient for the first time…

Dawne and I have been asked to deliver a 60 minute workshop on this key and sometimes challenging area of practice. The importance of choice and the delivery of holistic person centred care is repeatedly highlighted in the literature, both from researchers and policy makers.  Yet how can we even begin to deliver person centred care when there is at times a reluctance to open up and initiate these essential conversations? Let alone when communicating with someone who has limited sight, poor hearing and cognitive impairment. The evidence says that professionals can feel more comfortable approaching conversations in relation to sex, rather than having conversions with patients and those that are important to them focused on death and dying. 

Blue Ribbon Patient: Do Not Transfer

Rick Strang RN is Emergency Care Improvement Lead at Isle of Wight NHS Trust in England. When not involved in all types of emergency care Rick is usually finding innovative ways to avoid household chores.

Most of us across acute care have been involved in late night bed pressures that call for that dreaded decision to need to move some patients around between wards. Typically we see the only beds available to be surgical ones whilst the demand is for acute medical beds. Moving acute medical patients directly to these outlying beds from the emergency department (ED) may present too much of a risk. Lower acuity patients from acute wards are therefore often sought out to be transferred into these surgical beds thus making way for the more acute ED demand. End of Life (EoL) patients seem particularly at risk of being moved, which can be very distressing for families, friends, the patient and the care teams.

Book Review: Please tell me…

Liz Charalambous is a nurse and PhD student. She tweets @lizcharalambou and is a regular guest blogger for the BGS. Here she reviews ‘Please tell me…’ by Julia Jones and Claudia Myatt.

Without a doubt, one of the most important documents in older person care is the Alzheimer’s Society This is me support tool. It enables carers to access information with which to provide holistic care and is underpinned by a social model of care rather than a medical model, so important in today’s world of fast paced, pressurised, and increasingly politicised healthcare services. It places the person in the centre of care, ensuring their likes, dislikes, and preferences are recorded for the whole team to access.

Indeed, a favourite teaching strategy when introducing new students to dementia care is to provide them with two copies of ‘this is me’ and ask them to take them home for their partners or significant others to complete in the manner of ‘Mr and Mrs’ style 1970s TV programme. I have heard many stories of students returning the next day reporting back to the group that their other half had failed hopelessly in filling in the form, prompting them to realise the precariousness of ensuring person centred care in such instances.