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. Older people are much less likely to die in a hospice and more often die in acute hospitals undergoing life prolonging medical interventions with significant side effects; many of which are environmental and poorly recognised.   Understanding and identifying frailty is important because it helps us to explain the burdens of conventional acute hospital care so that patients and their families can make more informed choices.  But we still need to do more to provide better care for older people coming to the end of their lives.

5 years ago, I persuaded my Aunt to move to a care home. She was suffering from dementia and was no-longer able to look after herself. 6 months later she seemed happy and settled but she had forgotten who I was and thought she was back living in a hostel for single women circa 1950. I had no power of attorney (I had been trying to persuade my aunt it would be useful but I thought we had more time) so I had to apply to The Court of Protection for a deputyship; it took 6 months to sort out her finances.  She moved to a nursing home 2 years ago, and she is now mute and bedbound but she has not spent a day in hospital.  She has reached her 90^th birthday and is cared for with kindness and compassion. Would I have been surprised if she had died within a year- no, and yet here we are 5 years later with a DNACPR form which has been in place for over 4 years.  3 months ago, all her regular medication was stopped, she has anticipatory medicines written up and everything is in place for her inevitable yet unpredictable deterioration.  Whether she had died 2 years ago, if she dies tomorrow or in another year the plan and goals of treatment remain the same – to maximise her quality of life in the nursing home and ensure her death when it comes is peaceful and pain free.

The aim of the one day conference Living and Dying Well with Frailty: Quality End of Life Care for Older People, which was held on 6 March 2018 in London, was to bring together healthcare professionals working in different settings to look at how we can achieve our goal to enable people to live and die well with frailty. To consider where and how medical care should be delivered to maximise benefit and minimise harm.  To consider how to help older people prepare for dying and ensure their needs are met when that happens – whether within days or after several months of stability when a crisis occurs.  A number of important themes including recognition of the last phase of life, advance or anticipatory care planning and co-ordination of care were addressed by our expert speakers.  Over lunch there was an opportunity to visit the ‘World Café’; each stall demonstrating a different tool to enable better planning and care at the end of life.  Then, in the afternoon there was a chance for more interactive learning and sharing experience in our workshops. At the end of the day National Clinical Director for End of Life Care Professor Bee Wee summed up our learning from the day and encourage us to go back to work with new ideas/collaborations to improve end of life care for older people in our care.

See presentations from Living and Dying Well with Frailty event here.