Dealing well with life's only certainty

By Gaby Wills, January 17, 2014
Showing support: Jewish Care wants to make a difference to those with dementia at the end of their lives

Showing support: Jewish Care wants to make a difference to those with dementia at the end of their lives

Life is full of uncertainties: the only certainty we all face is death. While we may not like to talk about it, most of us, when probed, will admit to having thoughts about our own death. Some of us have strong ideas about how we would like to spend our last years, months, weeks or even minutes, but for many of us, discussing these ideas with family and friends is a step too far. We generally do not like to talk about death.

Our primary focus at Jewish Care is to develop services that enable people to age well and live meaningful lives. But we are also realistic. We know that life doesn't go on for ever. Our focus on personalised care needs to continue to the last moments of a person's life. That is why we don't want to shy away from talking about end of life.

As Jews we are reminded of the importance of the preservation of life. When we talk about end of life care, we are not in any way looking to negate the importance of preserving life, but are addressing the often sensitive issue of how people want to be cared for as their health deteriorates and they are approaching the end.

The government's dementia strategy and end of life strategy both recognise and advocate more choice and control for people in making decisions about their future care. With increasing numbers being diagnosed with dementia at an early stage, there is more opportunity to develop advanced care plans with people when they still have the capacity to make decisions about their life and death.

Over 80 per cent of people living in Jewish Care's homes have dementia. Research undertaken in 2011 indicated that people who die with dementia often receive poorer quality care than those who are cognitively intact.

Our programme helped families and staff alike in providing the best kind of end of life care

It has been widely reported that people with dementia, who are taken to hospital as they near the end of their life, frequently experience uncomfortable interventions, which fail to improve survival. They may die in a strange place with professionals who do not understand their needs for pain relief or comfort.

In 2008 over 40 per cent of people who died while residing in a Jewish Care home died in hospital, and although this number was somewhat lower in our nursing home (33 per cent) and compared favourably against the national average of 58 per cent, it showed us that we could improve the provision of our end of life care.

When we looked at these figures in 2008 we were also aware that the experiences of people dying while in Jewish Care homes was varied. We had always had positive feedback from bereaved families about their experience of the care and the support they received before and after the person died.

However, we also knew that some people experienced last-minute changes in care and unplanned hospitalisations, marring their experiences and resulting in increased stress, with, at times, lasting impact. Such occurrences also affected our staff, with high stress levels and few mechanisms for support in place. Our experiences did reflect those of others in the care home sector, but this didn't mean we were prepared to let this continue.

It is for all these reasons that in 2009 we embarked on a three year practice-based study, funded by the King's Fund in collaboration with Dr Jackie Morris, a consultant physician, and Professor Gill Livingston of University College London (UCL), to improve the quality of end of life care for people with advanced dementia in care homes.

With Dr Morris, we developed a programme of training that would seek to improve the end of life experience of residents with advanced dementia and their relatives, and reduce the stress for staff working in the home. It was also important for us, as a Jewish social care provider, to understand the impact (if any) of differences in cultural and religious attitudes towards end of life care, death and dying between the staff, many of whom are not Jewish, and the recipients of care, all of whom are Jewish.

The impact of this training programme was measured by Professor Livingston's research team from UCL. This study, while very small, was, and still is, the first practice-based study that considers end of life interventions for people living with dementia in care homes.

The study took place in Jewish Care's Lady Sarah Cohen House, a 120-bed home providing personal and nursing care to people with and without dementia.

A comprehensive training programme for the 130-strong staff team was developed. The programme explored topics related to dementia end of life care from medical and holistic interventions to communication and reflection. Presentations were also delivered to consultants at Barnet and to the local GP practice providing ongoing care to residents at Lady Sarah Cohen House. This included addressing culturally specific issues such as care of Holocaust survivors living with dementia.

We wanted to ensure our focus on enabling meaningful lives was also reflected in people's end of life. For most people, this is primarily about enabling the dying person to remain in their home. The programme provided staff with the skills to ensure that the dying person remains as comfortable and as pain-free as can be expected.

We invited all staff and family carers to take part in this independent evaluation. We asked family members about the quality of life before death, we looked at resident's end of life care plans and evaluated how many of these were met. We talked to staff about the impact of the training, how it had affected their ability and confidence in delivering end of life care. We looked at the impact that talking about death had on people's care plans.

Before the intervention, staff and families often resorted to sending relatives to hospital as their health deteriorated, without necessarily considering if this was the best course of action.

We examined the results using care notes and interviews with relatives of the 30 people with dementia who were residents in the home for more than one month and died in the year before the intervention, and their 29 counterparts who had died in the year after the intervention programme.

The study shows real differences for residents, staff and relatives, an improvement in the quality of end of life care and an overall increase in family satisfaction. The most significant change was in the number of residents whose end of life care wishes were documented and known (increased from 14 per cent to 73 per cent). More importantly, all advanced wishes were adhered to after the training compared to 70 per cent before. We also found that after the training programme, the number of days people spent in hospital in the three months prior to their death fell from four days to one and a quarter, and the number of people dying in the home rather than in hospital rose from 47 per cent to 76 per cent.

The results showed that relatives felt more supported and were consulted more about decisions. They thought that advance planning was necessary and that the quality of the end of life of their relative had improved.

Where staff were concerned, the study showed that they had greater understanding of end of life care, advanced wishes and management of distress and pain of people with dementia. They found it easier to discuss death and dying with relatives and felt more confident and comfortable with end of life planning and communication.

We were reassured that the research indicated that there was no conflict between our often non-Jewish staff's beliefs and Jewish traditions and culture when it comes to death. Many staff members talked about how they found the Jewish way of mourning comforting and supportive and how it helped them with their own personal grieving process.

The findings of this practice-based study were recently published in an academic journal. As this study is the first of its kind, it is important we share these findings to ensure that we can work together to improve the end of life care for people with advanced dementia.

Through talking about death with residents and family members we can support people to make positive choices about their end of life. These choices can be realised by providing staff with the skills and confidence to implement these wishes. This unique piece of work has taught us how much can be achieved and the real difference we can make when it comes to dealing with life's only certainty.

Gaby Wills is assistant director of Jewish Care's Care Services

Last updated: 6:29pm, January 17 2014