Developing primary palliative care...People with terminal conditions should be
able to die at home with dignity
Although 65% of people
with cancer want to die at home, only about 30%
are successful in doing so. A government committed to choice for
patients must improve this figure.
Developing palliative care services
in primary care is essential for realizing the
expectations of dying people. Such services could also offer
important opportunities for extending supportive
humane care at an earlier stage, and to people not only
with cancer but with chronic obstructive pulmonary
disease, motor neurone disease, and cardiac failure, for
example, who also often have palliative care needs.
Primary care
professionals have the potential and ability to provide end of
life care for most patients, given adequate training,
resources, and, when needed, specialist advice.4 5
They share common values with palliative care
specialists—holistic, patient centred care, delivered in the context
of families and friends.6
However, until recently, apart
from Macmillan general practitioners and nurse
facilitators, few comprehensive workforce initiatives
have been undertaken in primary care that focus on end of
life care.
Many cancer patients and
their health care providers experience existential distress long
before they die.7 Recognizing and alleviating such
suffering is important, but it often goes unrecognized or is
overlooked by services focusing on the terminal
phase of illnesses.
Primary care teams may know
patients over long periods of time. They can readily
identify patients from cancer and chronic disease
registers who might benefit from an early palliative care
approach.
Such patients could be identified by
clinicians asking one simple question of themselves: “Would I
be surprised if my patient were to die in the next 12
months?”
By identifying such patients proactively we
could deliver, simultaneously, active treatment and
patient centered supportive care, through a team with whom
many patients have a valued long term
relationship.
Palliative care services
need to be extended to patients with
non-malignant conditions who have comparable concerns to
and in some cases even greater unmet needs than cancer
patients.
Progress by palliative medicine specialists is
hampered by issues such as uncertainty about the
most effective models of care, lack of non-cancer expertise,
and concerns about pressure on specialist
services. General practitioners and community nurses can lead the way
in providing a palliative care approach for patients
with terminal organ failure illness.
The first step in such an
approach is for the goals of care to be discussed and
agreed. Management plans are adjusted accordingly.
Effective control of symptoms and maintaining quality of
life are prioritized.
In the light of these
important opportunities it is regrettable that the new
general medical services contract has not prioritized
palliative care. By day, other developments to achieve
the quality indicators are taking precedence.
By night and
at weekends, the new unscheduled care services
(which are responsible for providing care for 75% of
the hours in the week) are even less well configured
than previous out of hours provision to facilitate
dying at home. Such services specialize in dealing
with acute emergencies and, as such, often struggle to
meet the medical, nursing, and social care needs of
dying people and their families.
These changes will
greatly affect care for dying people and may increase the
number of hospital admissions.
However, one important
initiative is gaining momentum within primary
care. The Gold Standards Framework is a resource
for organizing proactive palliative care in the
community and is supported by funding from the Cancer
Services Collaborative, Macmillan Cancer Relief,
and the National Lottery.
The framework provides a
detailed guide to providing holistic, patient centred
care and thereby facilitates effective care in the
community.
Other recently initiated mechanisms for developing
primary palliative care include the training of
general practitioners with a special interest in palliative
care and the new end of life initiative in England to improve
palliative care provision by generalists and to
share examples of good practice.
To support such
developments it is essential that primary palliative care
is supported by an adequate academic base.
This is
admittedly a challenging arena in which to undertake
research, but progress has been made in recent years in
developing conceptual models and research
architectures for studying end of life issues.
Now we need to
build on this work to ensure that the understanding
and insights gleaned can be translated into effective
interventions.
Every person with a
progressive illness has a right to palliative care.
Patients desire a reassuring professional presence in
the face of death. General practitioners and
community nurses are trusted by patients and are in a
position to provide effective, equitable, and accessible palliative
care. This will happen only if they have adequate time and resources and
work in a system that encourages such care. Patients who receive
holistic support in the community may be less likely to require
expensive admission to hospital and often futile treatments at the end
of their lives. |
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