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.

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. 

Dying with dementia – we need to measure more than the place of death

Katherine Sleeman is an NIHR Clinician Scientist and Honorary Consultant in Palliative Medicine at the Cicely Saunders Institute, King’s College London. In this blog she discusses her paper Predictors of emergency department attendance by people with dementia in their last year of life: Retrospective cohort study using linked clinical and administrative data. She tweets @kesleeman

Over the past decade there has been a strong policy focus in the UK and elsewhere on dying out of hospital as a marker of good quality of end of life care. We have previously shown that, for people with dementia, hospital deaths have fallen over this time period, possibly as a result of these policies.

However, it is increasingly recognised that the place of death is an imperfect proxy for the quality of end of life care, providing little more than a snap shot of where a person was in their last moments.

Kindness: The essential skill in supporting a dignified death

Sue Newsome supported her Father during the last year of his life. In this blog she shares her thoughts and feelings from a carer’s perspective.  

My Dad had suffered for a year after his stroke, his gradual deterioration was devastating for him. As his physical and cognitive ability deteriorated he became more frustrated at his dwindling independence. Dad told me he wanted to die many times in different ways throughout the last year of his life. He told me he just wanted “to lay down and die” and that he felt like he was ‘drowning’, as an illustration of his depression. Numerous times he told me he wanted to be with my Mum, who had died 15 years ago. Ironically, whilst I loved and cared for Dad and never wanted to lose him, at times I wanted him to get his wish and die.

We need to talk about caring: dealing with difficult conversations

Anna Davies is Policy and Research Manager at Independent Age.

As a charity supporting older people, we know that conversations about ageing and future care needs are often put off until times of crisis. In some ways this should come as no surprise – thinking about mortality and threats to independence stir up complex emotions for everyone. But we also know the impact of these missed conversations: in particular families struggling to make decisions around care or housing without being sure of their relatives’ wishes. And with more and more older people likely to be relying on family support in the future – one estimate suggests a 63% increase in the number of older disabled people receiving informal care by 2035 – this is not an issue that is going away.

If it’s everyone’s business, lets make a plan

Pamela Levack is Medical Director of the charity PATCH – Palliation And The Caring Hospital contactus@patchscotland.com

David Oliver’s recent blog in the BMJ End of Life Care in hospital is everyone’s business, reports on the findings of the recent Royal College of Physicians Audit into End of Life Care. The two main findings, a need to increase the number of specialist palliative care doctors and specialist palliative care nurses in hospital and to ensure that newly qualified doctors have more knowledge and confidence dealing with end of life situations, match the aims of our recently established charity PATCH Palliation And The Caring Hospital