End of life in care homes – by Jo Hockley, for World Hospice and Palliative Care Day 2014

This post is written from Scotland, to celebrate World Hospice and Palliative Care Day 2014. My purpose is to highlight the need for services for frail older people as they face the end of their lives.  I think few of us are aware that the over 80-year age group is currently the only part of the UK population, and indeed that of many countries across the world, that is increasing.  The impact this will mean in the not too distant future for the number of deaths in various societies is unprecedented.

The scale of the care home sector

There are currently 920 care homes for frail older people in Scotland, from a total of 19,000 care homes across the UK.  Compared to the whole of the UK National Health Service, there are three times more beds in care homes. Twenty percent of UK deaths now occur in care homes, compared to 5% in hospices.  No longer are care homes places where older people go for companionship. These days, older people who are admitted to care homes are much frailer with multi-morbidities, when contrasted to 20 years ago; the majority will die within a year of admission.

Aspects of dying

Frailty in older people makes recognising dying more complex.  In this age group, dying can take on one of four dimensions:

·       ‘dwindling’ – slow decline over many months/years;

·       ‘terminal’ – more predicted decline over months/weeks due to the diagnosis of a terminal disease such as cancer;

·       ‘acute’ – decline over day/s often due to the extension of a stroke or a silent pneumonia;

·       ‘sudden’ – dying occurring in minutes/hours, for example due to a heart attack.

This final category is surprisingly high;  as many as 10% of deaths in care homes can be totally unexpected. If such a death happens at night it is seen as a ‘lovely way to go’.  However, if it occurs on the way to breakfast unfortunately it is far from dignified when attempts at re-starting the heart are made if no previous conversation has been had about a person’s preferences and wishes for care at the end of life.

Triggering change

In a lot of care homes in the UK, death is still seen as a failure by some staff because of a previous emphasis on rehabilitation.  However, as a result of various projects, attitudes are changing.  With the sheer numbers involved, the care for frail older people at the end of life could be the trigger to open up the conversation about death and dying right across society.

Alfred Worcester – a professor of medicine in the USA during the early part of the 20th century – studied dying in frail older people (1).  He realised there was ample of warning about dying in this group of people as long as one was more devoted to the person than the disease and wrote about dying as being a progressive not a simultaneous failure of vital organs.  He insisted that dying itself was not painful if a painful disease was not present.  He encouraged his medical students to sit with at least six patients during their final hours in order to understand the process of dying – something that we should also be encouraging in our day and age.

Tuning in

The dying process can be aligned to birth.  In my mind and through my experience there are three stages:  the importance of recognising dying, peripheral shutdown and imminent dying/central shutdown.  It is the first and the third stage that are often poorly recognised.

When a frail older person who is now spending more time asleep than awake during the day, lost the desire for food and where the multi-disciplinary team and family have ruled out further investigations/treatments, then things need to be put in place in order for this person to die with dignity.  Most healthcare professionals and families recognise dying at peripheral shutdown – the mottling of the legs, the heavy laboured breathing, the death rattle – and this can then be the cause for avoidable panic to get everything organised.  It is the final third stage that often goes unnoticed – and if it does go unnoticed then often the person dies alone. In this final stage, the pulse changes to being thin and thready – often the death rattle is not so noticeable as the breathing becomes more shallow. At this point the person is unlikely to have more than an hour or two to live.

One of the differences between people dying in mid-life from cancer and frail older people dying from multi-morbidities is that we need to be much more careful in the medications that we use in the last days.  Older people facing death are naturally dehydrated, their kidneys are old, they may also have varying degrees of dementia – very often less medication is appropriate; and, on occasions no medication at all is necessary as dying is a natural process in a frail older person at the end of their life.

Learning

As we learn what it means to afford a good dignified death in an older person in a care home, we gain lessons about the need to be human – to drop the professional role mask as Professor David Roy (2) suggests:

‘Dying with dignity is…..dying in the presence of people who know how to drop the professional role mask and relate to others simply and richly as a human being.’

Note:

Dr Jo Hockley delivered a very well recieved lecture on this topic at the University of Glasgow, Dumfries Campus, to mark World Hospice and Palliative Care Day 2014. We are in dicussion with Jo about how some of the ideas she explored can be taken forward in our own region,  of Dumfries and Galloway. Jo trained as a nurse at St Bartholomew’s Hospital, London in the early 1970s and has worked in specialist palliative care for over 30 years. During her career she has set up two hospital-based palliative care teams (St Bartholomew’s Hospital, London and Western General Hospital, Edinburgh) and more recently a Care Home Project Team serving over 100 care homes at St Christopher’s Hospice, London. She was awarded an OBE for her work in palliative care nursing and has recently returned to Scotland, to work with colleagues at the University of Edinburgh. Jo has written widely in recent years on palliative care and action research in care homes.

References

(1) Worcester A (1935). The Care of the Aged, the Dying, and the Dead. Springfield, IL: Thomas.

(2) Roy, D (1988) Ethics & Aging. Vancouver: University of British Columbia Press.