Earlier this year I was invited by lovely Pamela Holmes, Practice Development Manager at SCIE to facilitate a day's workshop to explore and collect the experiences of families who had cared for their loved ones at home until the end of their lives.
It was a privilege to spend time with some amazing, dedicated and thoughtful carers and a poignant experience for all concerned. Later I returned to the organisation to provide an overview of the day and what we learned.
Here's an excerpt from the final research document, of which the workshop was a small part...
Research suggests that between 50 and 74 per cent of people who are dying
express a preference to die at home, although this proportion may decline as death
becomes more imminent and people want access to more extensive support. However,
around 59 per cent of people die in hospital, 17 per cent in a care home and 18 per cent
in their own home.
Between 50 and 70 per cent of cancer patients express a preference to die at home,
while just under half of people with advanced, non-cancerous conditions prefer a home
death. However, this may change as a patient's condition deteriorates: patients may
choose to transfer to other settings, including hospital, out of concern for their family
carer, or because they feel that hospital is a place of safety, offering increased hope of
survival. Older people are more likely to die in a care home, especially if they have
The single most important factor that enables people to die at home is a caregiver who
is willing and able to provide care at home.
The following personal and local factors are also thought to influence the place of death:
the type of terminal condition (e.g. cancer patients are more likely to die at
home while people with dementia are more likely to die in a care home)
symptoms, and whether they can be addressed in a home setting
locality (59 per cent of all deaths occur in a hospital, although this figure varies
from 46 per cent to 77 per cent between primary care trusts)
socio-economic status (higher socio-economic status increases the prospect of
a home death maybe because people can purchase care, or they live in a more
suitable care environment, with bigger rooms)
type of community (living in a rural (dispersed) community may reduce access
to end of life care services that can facilitate death at home)
age (being of a younger age increases the likelihood of death at home –
possibly with parental carers who can support death at home)
gender (being male increases the likelihood of death at home – possibly
because female spouses are more able to provide care at home)
minority ethnicity (increases the likelihood of a hospital death)
living alone or being unmarried (increases the likelihood of a hospital death)
hospital bed availability (increases the likelihood of a hospital death)
availability of palliative care (increases the likelihood of a home death)
For some people approaching the end of their life, there will be clinical reasons for
admission to hospital, and for some it is their preferred place of care. However, although
there are exceptions, hospitals are generally not well resourced to serve the holistic
needs of patients, cannot offer personalised care, respond to individual choice or
provide familiar and consistent staff, and a hospital ward can be a frightening place to
Reducing the number of hospital admissions and the time spent in hospital in
the last year of life, irrespective of whether or not people die at home, is generally felt to
be worthwhile. In addition, hospitals are expensive places in which to be cared for.
Lack of access to support services in the home
Poor access to care services, and lack of support for carers, may increase the likelihood
of people at the end of their life being admitted to hospital, often as an emergency. The
absence of 24-hour response services and poor access to advice and medication leads
to unplanned admissions.
In addition, information on people is not always captured or
shared effectively between the different agencies involved in providing care. This can
mean that an advance decision not to use cardiopulmonary resuscitation is not known
about or recognised by providers such as an "out-of-hours‟ general practitioner (GP) or
the ambulance service, and may result in an inappropriate admission to hospital.
Most people nearing the end of life will spend some time in hospital during their final
year. Therefore another reason why death in hospital may occur is delayed discharge,
where the person dies before equipment, home support services and transport can be
Services that are needed to support people to die at home
A National Audit Office report concluded that the proportion of people who die in
hospital could be reduced. Services to support palliative care at home must be locally
available. There was evidence of variation in local services, including some areas where
no 24-hour palliative care or advice services were available. Section 5 of the report
identified the type of services that need to be available.
Some research into hospice at home and other support services suggested that
it was not the availability of services, but the timing of referral to these services that was
critical to achieving death at home.
People who are in the last year of life must be
referred early enough to home-based hospice and palliative care services. If referral is
not made until the last fortnight of life, it may not be possible to change the course and
place of death.
There are factors that influence the sustainability of end of life care at
home, which include the carer‟s ability to cope and the provider's capacity to provide the
service for more than a few months. It may be easier to arrange health and social care
support at the right time for a person whose illness has a longer, more stable or
predictable disease course.
Dying well at home: research evidence
Dying well at home: research evidence
Influence of health condition or disease on dying at home
Much of the literature has concentrated on services supporting people with cancer to die
at home, and some of the services available also focus on such care. Cancer care
charities have been proactive in designing and funding support services. By contrast,
people suffering from chronic obstructive pulmonary disease (COPD) get far less
Dying of COPD is associated with high symptom burden, emotional impact, loss of
social functioning, breathlessness and poor understanding of and access to information.
Compared with cancer patients, end-stage COPD patients have less access to
specialist support. It can be difficult to predict the end stage, so care planning may be
neglected until there is an acute crisis, which is likely to end in hospital admission.
People with terminal disease other than cancer lose out, even though „ongoing contact
with health-care professionals minimizes anxiety and severity of dyspnoea
[breathlessness] in the final stages of life‟.
Parkinson's disease is associated with a progressive decline in motor abilities and
cognitive and sensory functions (which may include dementia), and these effects are
associated with emotional and mental ill-health and social isolation. Parkinson's
disease is not considered a terminal illness and so the need for palliative care can be
overlooked, but it is incurable and progressive.
Speech difficulties mean that any
care professionals involved have to devote time to communication. In Northern Ireland,
hospice social workers confirmed that it was more difficult to get services for people with
Parkinson's disease – in contrast, they were automatically available to people dying of
An interview study of patients and carers of people with Parkinson‟s disease found
that people did die at home often, without specific palliative support, whether or not they
had chosen to die at home. All the 15 former carers interviewed had been caring for
more than seven years and were surprised at the sudden speed of death:
"I knew he
was deteriorating, but I didn't expect him to die too soon.‟ Typically, carers had been
isolated and were exhausted. Few knew about hospices or domicilliary palliative care
services, assuming hospices were only for patients with cancer.
Specialists were regarded as invaluable but difficult to access because of long waiting
lists. In addition, the quality of the interaction was sometimes poor and brief, with little
information or signposting to other sources of support. "The neurologist saw him every
six months and agreed the tablets: they didn't have a lot of time‟. There was poor
communication between primary and specialist services.
All the carers agreed that there
needed to be an integrated care package.
Stroke is the third greatest cause of death in the United Kingdom (UK), and people who
have had a stroke may have high support needs. One study surveyed 53 carers of
people who had had a stroke, had been ill for over a month and had lived at home during the last three months of life.
It found that the majority of care (personal care,
household tasks, taking medication and night-time care) was provided by carers, 43 per
cent of whom had to give up work or make major life changes to provide care. The 2007
Stroke Working Party found that despite progress in the development of specialist
stroke services in hospitals, one of the most common complaints was lack of support at
Three-fifths of informants said that the deceased had had problems in
communicating and almost 60 per cent reported that the deceased person had needed
help with at least seven out of 10 activities of daily living. Less than 10 per cent of the
deceased stroke patients had seen a GP weekly; and very few had had contact with
community nursing services or access to palliative care. Sixty-two per cent of the
deceased stroke patients were aged 80 or older, while 81 per cent of the carers were
aged 50 or older, and a quarter of carers were aged 70 or older.
Practice Example 10 outlines a process known as the Amber Care Bundle which
supports people at the end of life following a stroke.
End of life care for people with dementia is also neglected, despite the increasing
number of people dying with dementia. It can be traumatic for a person with dementia to
be transferred to an unfamiliar hospital setting.
Unlike cancer, there are few specialist services for palliative care at home for people
with dementia. One study evaluated a dementia community support service that
had been started six years previously in response to carer demand. The evaluation was
not strong in terms of evidence, and involved a very small sample of 14 carers, although
it did highlight the difficulties faced by people trying to care for people with dementia at
home, many of whom had additional health problems. Eight of the people cared for by
the 14 carers died at home, and six in hospital after brief admissions. Issues raised
included the following:
Dying well at home: research evidence
There was poor access to equipment such as hospital beds and hoists,
continence pads and sheets, commodes, wheelchairs, pressure-relieving
cushions, Zimmer frames, shower/bath aids and toilet raisers. One said that
they were not told that they could apply for free continence pads through the
National Health Service (NHS).
Carers experienced difficulty in managing distress and symptoms.
There was a strong feeling that hospital admission was to be avoided if possible.
Several carers cited the distress the person with dementia suffered when in hospital.
"A person with dementia in a normal hospital ward: they just don't
go together. One time he was in the hospital they kept calling me
again and again to go up there, as they could not cope with him ...
The first time he was so disruptive they called security, poor bloke
was terrified. He was only frightened and trying to get out." (Carer)
A research-based literature review on community services for people dying with
dementia at home or in care homes highlighted particular issues for care in the