Research Realities: end-life-care

In a society where experiences of dying are often a taboo subject, an end-of-life project focuses on allowing people to die at home with good care. Melanie Henwood (pictured) describes the results

  • Abstract

In early 2008 Housing 21 and the Department of Health’s National End-of-Life Care Programme began a six-month service improvement project at three sites, focused on enabling terminally ill extra-care tenants to die at home where that was their wish. The project was evaluated over the same period using qualitative and quantitative approaches.

  • Objectives

The Department of Health End-of-Life Care Strategy was published in July 2008. The strategy acknowledged that the experience of death has changed profoundly with far less familiarity with death and dying than was the case a century ago, and with most deaths (58%) occurring in hospital following a period of chronic illness.

As the Commons health select committee inquiry on palliative care also noted four years ago, despite these trends, when ­questioned the majority of people state that they would prefer to die in their own homes. While some people have excellent end of life care, many do not. Too many people experience unnecessary pain and distress, are not treated with dignity and respect and do not die the “good death” that they would prefer. The national strategy addresses the need for high-quality end-of-life care for everyone, wherever they may be.

It was against this background that the Housing 21 and NHS End of Life care team undertook the service improvement pilot project designed to enhance dignity and choice in end-of-life care in three extra-care housing settings in England. The specific objectives of the project were to:

● Enable terminally ill residents of extra-care housing to die at home if they chose to.

● Put in place processes to ascertain residents’ preferences and to maximise the capacity of extra-care housing providers to support those choices.

● Develop an integrated approach in the community to accessing support for tenants, their families and carers and staff.

● Explore the challenges of providing end-of-life care in extra-care housing settings.

● Improve the skills and knowledge of staff.

● Develop high quality data monitoring tools and ensure good baseline data.

  • Findings

The project undertook in-depth work with the three extra-care sites, surveyed all 35 of the Housing 21 extra-care schemes (using a written questionnaire) and gathered data on recent deaths among tenants. Four key issues were identified across both the fieldwork sites and other data collections. These were:

● Promoting dignity and choice for older people and family carers.

● Support and training for staff.

● Extra care and its links to wider health and specialist resources.

● Commissioning and funding.

The views of extra-care tenants about end-of-life matters were as diverse as among any other population. While some were open in their views about death and clear about their own preferences about what they would like to happen at the end of their life, others were negative or avoided confronting the subject.

Responses to the questionnaire highlighted situations where dementia or other cognitive impairment had profound consequences in reducing or removing the ability of people to communicate their wishes.

It was particularly worrying that staff working in housing and in health often did not understand arrangements introduced by the Mental Capacity Act 2005. As the report notes, the provisions for the new Welfare Lasting Power of Attorney are especially relevant to end-of-life care since they allow for a person to be appointed to make health decisions on someone’s behalf if they should lack the mental capacity to do so for themselves. Tenants of extra-care schemes were often similarly unaware that new arrangements extend Enduring Powers of Attorney beyond financial matters and into the territory of decisions about health interventions.

Information from the survey questionnaire indicated that tenants who were “least likely to have their wishes about end-of-life care either known about or met” were those who had not lived in the schemes for very long, and whom staff therefore knew less well than established residents. People who had lived longest in extra care schemes and whose deaths were expected were more likely to die in their flat, while hospital deaths were more likely to be unexpected and to occur among more recent tenants. While deaths that occurred within an extra-care scheme were believed to have met the preferences of 75% of those people, this was true of only 20% of the deaths of ­tenants that occurred in hospitals.

The wishes of tenants and of their families are not always the same and the project found that “in such cases it seemed relatively common for the family’s wishes to take priority over those of the tenant.” This is a particularly important finding in the light of the personalisation agenda set out in Putting People First and the emphasis on maximising control and self-determination.

Staff in extra-care housing have a potentially important role to play in helping residents to articulate their preferences about death and dying. At the outset of the project staff revealed the same discomfort about such subjects as many other people and would typically avoid such discussion, or worry that they were ill-equipped to support tenants in addressing difficult subjects. However, in the course of the evaluation staff reported becoming more confident in having these discussions, particularly after having attended training sessions.

While extra-care housing provides access to support for tenants, this is not equivalent to the level or intensity of support that might be available in a care home. Assumptions and misunderstandings about what a scheme can or cannot deliver can have negative consequences for sick and dying tenants. The study reported, for example, that in one scheme district nurses did not realise that staff were providing additional overnight support on a voluntary basis to support the night cover staff because a tenant was dying. Once they became aware of this, in a similar situation they would arrange for the Marie Curie overnight sitting service “as they would for other patients living in their own homes.”

Sometimes inappropriate assumptions about what extra-care staff are able to do around complex caring tasks can create stress for staff who may not feel adequately equipped, and it can also be problematic if it means staff are acting outside Commission for Social Care Inspection regulations. Lack of knowledge and understanding of the role of extra-care housing could lead hospital staff to make inappropriate judgements about whether a person could return to a housing scheme or should enter a nursing home. The evaluation found that poor partnership working between the acute and community health sectors meant that such judgements could be made without involvement of scheme managers, or discussion with the older person about their wishes.

  • Analysis

People are moving into extra-care housing with higher levels of need (including dementia) and at more advanced years. At the same time, the emphasis on increasing personalisation in health and social care – with greater support for people to exercise choice and control – and the personalised focus of the End-of-Life Strategy are resulting in a significant challenge for extra-care schemes to make these principles a reality.

The study identifies particular challenges where the housing and extra-care elements of a scheme are managed or provided by different organisations. Both the housing and the extra-care agencies need to be fully engaged in understanding the implications of personalising the support they offer. Good quality support and end-of-life care requires people to work together across professional and organisational boundaries. As the report points out, achieving what a tenant wants at the end of their life requires prior knowledge and understanding of those aspirations, as well as of what the extra-care scheme is able to support and provide.

Many of the recommendations offered by the report are simple and straightforward and include: focusing on ensuring clarity about different roles and responsibilities taking opportunities to raise awareness about the importance of death and dying reviewing policies and procedures to incorporate end of life care issues and supporting skills development and training for extra care housing staff.

Even in the course of this brief and small scale project it was evident that change could be achieved. During the evaluation it became more normal for staff to talk and think about end-of-life care. Staff also became more expert in identifying signs that someone was approaching the end of their life and to know how to respond. The developing engagement of staff also meant that there was more interaction with health and care staff and discussion about how extra-care schemes could support end-of-life care.

As Jeremy Porteus, Department of Health national programme lead, observes in the foreword to the report: “It is hard to think of a more personalised issue than how we die,” and as the End-of-Life Care Strategy makes clear, helping people to have a good death is an aspiration that all health and care services should support. This has enormous implications for hospitals, care homes and hospices, but the role of the community and of extra-care housing within that will be increasingly important in supporting people to die at home with dignity.

Melanie Henwood is an independent health and social care consultant


Practice implications

Providing dignity and choice

● Extra-care tenants and their families need to be given opportunities to discuss their preferences about end-of-life issues and to record these in ways that will ensure their wishes are respected.

● End-of-life care for people with dementia or other cognitive impairment must also be addressed so that choices of people with dementia can be communicated and recognised.

Training for staff

● End-of-life issues need to be addressed in induction training (a “home for life” includes the end-of-life) – additional training should be provided and the report recommends using local case study examples of tenants’ experiences. Specific training for staff and managers needs to include new arrangements under the Mental Capacity Act 2005.

Links to resources

● Extra-care staff need to be fully engaged in relevant local forums and groups on end-of-life and related matters. Health, housing and social care colleagues need opportunities to share experiences and understand their respective contributions to support.

● Colleagues need to understand the capacity of extra-care housing and what it can contribute to support at the end of life. Health colleagues will need to supervise care staff in undertaking certain tasks if they are to stay within regulatory requirements.

Commissioning and funding

● Responding to the changing care and support needs of people at the end of their life requires flexibility and capacity to increase support immediately if a tenant’s situation deteriorates.

● The report identifies the importance of matching the housing and care components if these are provided by different organisations. When extra care schemes are commissioned to support people remaining independent, this needs to include arrangements for palliative and end-of-life care from the outset.


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