End of Life Care Surveys
In June 2010, the RCGP Scotland End of Life Care Sub-Group felt
that it would be beneficial to undertake surveys of GPs and
patients to discover what patients and doctors to determined
as "good" end of life care and to examine how this could be
achieved. By conducting the surveys, it was felt that the responses
received could be used to inform the direction of the group to
ensure that any work undertaken would be of relevance and benefit,
intead of assuming what people want and need.
To obtain the feedback, two surveys were created - one for
GPs, which was circulated to all RCGP members in Scotland, and the
other for patients, which was circulated through the RCGP Scotland
patient participation group - P3. The surveys comprised of six open
ended questions to obtain their views on end of life care and are
as below:
|
Question |
Patient Survey |
GP
Survey |
| Q1 |
What does "good" end of life care mean
to you as a patient? |
What does "good"
end of life care mean to you as a GP? |
| Q2 |
What resources do you feel would be
needed to make "good" end of life care possible to achieve? |
What resources do you feel would be needed
to make "good" end of life care possible to achieve? |
| Q3 |
What
skills/qualities do you feel a GP requires to deliver "good"
end of life care? |
What skills/qualities do you feel you, as a
GP, require to deliver "good" end of life care? |
| Q4 |
In your opinion, what factors make
"good" end of life care difficult to achieve? |
In your opinion, what factors make "good"
end of life care difficult to achieve? |
| Q5 |
As a patient, what do you think you
would wish from your GP if you required end of life care in the
future? |
What care do you think patients who require
end of life care wish to receive from their GP? |
| Q6 |
What support do you think GPs require
from the rest of the primary care team to deliver "good" end of
life care? |
What support do you receive/require from
your primary care team to deliver "good" end of life care? |
| Q7 |
Have you experienced end of life care
e.g. through a friend or relative? |
Any further comments? |
| Q8 |
Any further comments? |
|
The findings from the survey were very encouraging as the
feedback from both groups was, reassuringly, very similar.
Unsurprisingly to most GPs, the main priorities in end of life care
highlighted were: More time with patients; more nursing time; and
training and support.
Article on findings
Below is an article written by Dr Carey Lunan, who is a member
of the sub-group, which she has written on behalf of the group to
summaries the feedback from the surveys:
What do we mean by Good End of Life Care?
End of Life Care is a fundamental part of general practice and
often one of the most rewarding aspects of a GPs job. It is an area
that has received much medical and political attention in the last
few years.
During this time we have seen new legislative proposals
(Palliative Care (Scotland) Bill[1], End of Life Choices (Scotland)
Bill[2]), a new national palliative care strategy (Living and Dying
Well[3]), developments in advance care planning and the development
of a single DNACPR protocol[4], changes in GP software and funding
streams (electronic palliative care summaries, Palliative Care
DES), RCGP initiatives, and the new GMC Guidance on Treatment and
Care Towards the End of Life[5].
We must view these changes and developments in our current
cultural context, at a time when the average life expectancy of men
and women in the UK continues to rise (along with the concomitant
rise in age-related conditions), and the availability and
effectiveness of life-sustaining treatments continues to advance.
We have the ability and opportunity to live longer, fuller lives,
and as a society we wish to be more involved in decisions that
affect us. The desire of GPs and their patients to preserve
autonomy where possible, and provide meaningful and holistic care
at the end of life is strong. But to facilitate good end of life
care, in the midst of competing clinical needs, we need to call on
our most precious resource – time.
Research
What do we mean by good end of life care? In July 2010, the RCGP
Scotland End of Life Care Sub-Group undertook a survey of its GP
members and the patient partnership group P3, to gain a better
understanding from GPs and patients as to what they believe
constitutes “good” end of life care. What skills are required to
deliver this, and what are the challenges faced in trying to
achieve this?
The results have been very useful in guiding how we proceed as a
devolved working group, to inform legislation and new policy in
Scotland, in a way that best meets the needs of our patients and
their GPs. What has been most encouraging are the consistent themes
that have emerged from both groups; what matters to us as GPs in
providing good end of life, is the same as what matters to patients
who are at the end of their lives, and to their families.
The questions that were asked to both groups were as
follows:
1. What does “good” end of life care mean to you (as a patient /
GP)?
2. What resources do you feel would be needed to make “good” end
of life care possible to achieve?
3. What skills or qualities do you feel are necessary to deliver
“good” end of life care ? (from your GP / as a GP)
4. In your opinion, what factors make “good” end of life care
difficult to achieve?
5. What do you think patients who require end of life care wish
from their GP?
6. What resources and supports do you receive or require from
your primary care team to deliver “good” end of life care?
Findings
The three themes that emerged most consistently across these
questions for both GP and patient groups were, in many ways,
unsurprising. They comprise the ability to attend to the
psychosocial needs of the dying patient with empathy, the need for
clinical competency in palliative care management, and the desire
for patient involvement in decision making and forward planning.
Adequate and protected time to deliver these aspects of good end of
life care was acknowledged as a fundamental factor by both
groups.
Publication and sharing
So how can we, as a College, use the information we have
gathered from this survey to strive towards what is universally
seen as “good” palliative care? The sub-group in Scotland hope to
share the results of this survey as widely as possible, as it
is important that our patients (and our politicians) know that our
priorities are the same. To this end, our group plans to write
articles for the BJGP and the lay press, and share our findings
with the Parliamentary Cross Party Group in Palliative Care.
Additionally, although we cannot unfortunately generate time
itself, we can help to protect what time there is. We wish to
support high levels of clinical competence in this area by working
in collaboration with our local education providers and faculty
boards to ensure that there are adequate postgraduate education and
training opportunities, and by continuing to review the GP training
curriculum in its length and content. We plan to work alongside
Marie Curie Cancer Care and the UK College to design a
resource-based website for palliative care, and design and publish
research into patient experience that will continue to inform
policy in this area. RCGP Scotland continues its support of the
Deep End Project[6], which specifically addressed the needs of the
Top 100 most deprived practices in Scotland, where palliative care
needs may be especially difficult to meet. In addition, the UK
College continues to actively support and campaign on behalf of our
valued district nursing service through its representation on
“Review of Nursing in the Community” and may also support the
formal recognition of continuity of care as a marker of quality
under nGMS.
The themes that have emerged from this piece of work may be
unsurprising, but they do provide an overwhelming sense of
reassurance, that fundamentally what we wish for as clinicians, is
the same as our patients wish from us. After all, one day we will
all be patients, and one day we will all reach the end of our
lives.
Thanks
We would like to thank the 238 GPs and 20 members of P3 who took
the time to respond to this questionnaire, for their thoughtful and
thought-provoking feedback, and also to the Clinical Innovation and
Research Centre RCGP for their initial analysis.
Dr Carey Lunan, GP, SE Scotland Faculty, writing on behalf
of the RCGP (Scotland) End of Life Care Sub-Group.
References
[1] Further details can be accessed at
http://www.scottish.parliament.uk/
[2] Further details can be accessed at
http://www.scottish.parliament.uk/
[3] Full document accessed at
http://www.scotland.gov.uk/Resource/Doc/239823/0066155.pdf
[4] Policy document access at
http://www.scotland.gov.uk/Topics/Health/NHS-Scotland/LivingandDyingWell/ShortLifeGroups/-DNACPR/dnacprdocs/dnacprpolicydocument
[5] Accessed at
http://www.gmc-uk.org/End_of_life.pdf-32486688.pdf
[6] Access reports at
http://www.rcgp.org.uk/college_locations/rcgp_scotland/initiatives/health_inequalities/deep_end_reports.aspx