Many patients are ill because of wrong choices they made in their
life (eg smoking, excessive drinking, poor diet etc). How are we going to
ensure that they make the 'right choices' with their individual budgets
particularly if direct cash payments are made? How do we prevent the
exploitation of these individuals? This is not a 'paternalistic 'concern.
The checks and balances needed would be no more different from havin...
Many patients are ill because of wrong choices they made in their
life (eg smoking, excessive drinking, poor diet etc). How are we going to
ensure that they make the 'right choices' with their individual budgets
particularly if direct cash payments are made? How do we prevent the
exploitation of these individuals? This is not a 'paternalistic 'concern.
The checks and balances needed would be no more different from having a
legally binding 'lower speed limit' around schools rather than relying on
individual's common sense.
What about postcode lottery?. Individual service costs in London are
generally higher than in north but ill health is more prevalent in north.
[1] Would the patients from different regions have a different budget for
the same service? What criteria would be adopted for funding each region?
If age is used, people in north would certainly lose out. [2]
Individual budgets are, in principle, a very good idea but the
practicalities of implementation can make it into a white elephant . [3]
Lessons need to be leant from the Dutch experience.[4]
References
1 Hacking JM, Muller S, Buchan IE. Trends in mortality from 1965 to 2008
across the English north-south divide: comparative observational study.
BMJ 2011;342:d508-d508.
2 Bambra CL. Clear winners and losers are created by age only NHS
resource allocation. BMJ 2012;344:e3593-e3593.
3 Duffy SJ. Why Clinicians Should Embrace Individual Budgets. BMJ
Support Palliat Care Published Online First: 31 March 2012.
doi:10.1136/bmjspcare-2011-000118
4 Ginneken E v., Groenewegen PP, McKee M. Personal healthcare
budgets: what can England learn from the Netherlands? BMJ 2012;344:e1383-
e1383.
I am delighted to read Abel et al's conceptual paper regarding a
social model of care, utilising a compassionate communities framework. As
the paper has outlined, Milford Care Centre, Limerick, Ireland commenced a
Compassionate Communities pilot project in 2011. This project aims to
empower communities and reduce fear and stigma associated with death,
dying, loss and care. The project is being led...
I am delighted to read Abel et al's conceptual paper regarding a
social model of care, utilising a compassionate communities framework. As
the paper has outlined, Milford Care Centre, Limerick, Ireland commenced a
Compassionate Communities pilot project in 2011. This project aims to
empower communities and reduce fear and stigma associated with death,
dying, loss and care. The project is being led by a specialist palliative
care provider and does not aim to displace service provision. An element
of the Limerick project being explored for development in 2012-3 is a
community mentor project.
I would like to point out that the mentor project has not yet
commenced, and was not in operation at the time this paper was published.
Furthermore, it is our intention that access to the model, when
established, will most likely be patient and family initiated and not
service led as suggested in this paper by Abel.
I would be most grateful if this clarification could be published to
ensure our project is communicated clearly to readers.
We would like to thank Drs Satchithananda, Hookey and Sister Ingram
for their interest in our editorial. We welcome this opportunity to
respond. We framed our discussion in the setting of left ventricular
systolic dysfunction as this is where the robust evidence base for heart
failure therapy has evolved. The evidence base for effective therapy for
the clinical syndrome of heart failure with preserved systolic functio...
We would like to thank Drs Satchithananda, Hookey and Sister Ingram
for their interest in our editorial. We welcome this opportunity to
respond. We framed our discussion in the setting of left ventricular
systolic dysfunction as this is where the robust evidence base for heart
failure therapy has evolved. The evidence base for effective therapy for
the clinical syndrome of heart failure with preserved systolic function
(HFpSF) is much weaker, with very few randomised controlled clinical
trials (RCTs). However, we accept that the symptomatic burden and
mortality risk for those with HFpSF is comparable, and loop diuretic
therapy for the associated dyspnoea and congestion is no less applicable
to that clinical cohort. Indeed, differentiating between such sub-
populations may be largely irrelevant as many heart failure patients
exhibit demonstrable abnormalities of both systolic and diastolic
function.
While there are differences in the assignment of weighting in terms
of the class of recommendation and hierarchy of evidence on the
conventional use of loop diuretics over the range of acute and chronic
heart failure treatment guidelines, and RCTs may be hard to justify
ethically, we have an experiential
repository of about 40 years of clinical practice
with the use of oral and intravenous furosemide across the clinical
spectrum of heart failure. Accumulation of this experience underpins
clinical judgement and is consistent with the development of so called
'tacit knowledge' which has been proposed as fundamental to evidence base
development 1.
Certainly, individualising patients' dosing regimens with appropriate
clinical monitoring is mandated for this therapy to be effective and safe,
irrespective of the route of furosemide administration as demonstrated in
Diuretic Optimization Strategies Evaluation (DOSE) trial 2. The
successful use of this approach specifically for the prescription of
subcutaneous (SC) furosemide was apparent in the Scarborough study cited
in our editorial in which a wide dosing range was employed 3. This study
also demonstrated the effectiveness of multidisciplinary team working,
widely accepted as beneficial across the entire heart failure disease
trajectory, and no less relevant at the end of life 4. Indeed, the
recently published NICE heart failure quality standards require such an
approach, integrating the complementary clinical skills of both heart
failure and palliative care professionals to support those with moderate
to severe heart failure 5.
The main driver behind our editorial was concern about the largely
empirical adoption of SC furosemide by the palliative care community for
the treatment of patients dying with heart failure as the primary terminal
illness or as a comorbidity without addressing the need for systematic
assessment of effectiveness or clinical risk. This use of SC furosemide
for some of the sickest heart failure patients challenges the accepted
treatment paradigm, but also provides opportunity for formal clinical
evaluation, and we welcome the authors' potential contribution to
development of the evidence base for this form of therapy.
James M Beattie
Department of Cardiology, Heart of England NHS Foundation Trust,
Birmingham, UK; National Clinical Advisor, NHS Improvement.
Miriam J Johnson
Hull York Medical School, University of Hull; St Catherine's Hospice,
Scarborough, UK.
References
1. Thornton T. Tacit knowledge as the unifying factor in evidence
based medicine and clinical judgement. Philos Ethics Humanit Med. 2006
1:2
2. Felker GM, Lee KL, Bull DA. et al, Diuretic strategies in
patients with acute decompensated heart failure. N Engl J Med 2011;
364:797-805
3. Zacharias H, Raw J, Nunn A. et al. Is there a role for
subcutaneous furosemide in the community and hospice management of end-
stage heart failure? Palliat Med 2011,25: 658-63.
4. Ryder M, Beattie JM, O'Hanlon R. et al. Multidisciplinary heart
failure management and end of life care. Curr Opin Support Pall Care
2011, 5: 317-21.
5. NHS National Institute for Health and Clinical Excellence. Heart
failure quality standard, June 2011. Available from
http://www.nice.org.uk/guidance/qualitystandards/chronicheartfailure/home.jsp
We read the editorial concerning the use of subcutaneous furosemide
in heart failure with interest. We feel that there is a substantial
opportunity for misinterpretation of the editorial by readers not as
familiar with the issues raised as the eminent authors themselves.
This particularly relates to:
1 The heart failure syndrome
It is important to emphasize that the editorial relates to the treatment
of congestive symptom...
We read the editorial concerning the use of subcutaneous furosemide
in heart failure with interest. We feel that there is a substantial
opportunity for misinterpretation of the editorial by readers not as
familiar with the issues raised as the eminent authors themselves.
This particularly relates to:
1 The heart failure syndrome
It is important to emphasize that the editorial relates to the treatment
of congestive symptoms in patients suffering with the heart failure
syndrome irrespective of its causal mechanism i.e. left ventricular
systolic dysfunction is only one of many mechanisms inducing this syndrome
i.e.50% of patients hospitalised with heart failure do not have left
ventricular systolic dysfunction[1,2].
2 The use of furosemide in heart failure symptom relief.
It is important to recognise that the lack of evidence suggested for
subcutaneous furosemide is equally applicable to any route of delivery for
furosemide i.e. there are no placebo controlled randomised trials
demonstrating the longer term benefits of furosemide (irrespective of its
administration route) in terms of morbidity and mortality in heart
failure. Indeed there is a discrepancy in the analysis of the evidence for
the Grade 1 recommendation for furosemide (i.e. evidence and or general
agreement that a treatment or procedure is beneficial, useful and
effective) suggested both by American and European guidelines in heart
failure. The European Society of Cardiology guideline [3]suggests the
level of evidence is 'B' (i.e. limited populations evaluated. Data derived
from a single randomised trial or from non-randomised studies) wheras the
American Heart Association [1] evaluates the same evidence as 'C' (i.e.
very limited populations evaluated. Only consensus opinions of experts,
case studies or standards of care).
3 The efficacy and dosing of subcutaneous furosemide
The argument in favour of this practice is clearly documented by the
authors . Difficulties in dosing subcutaneous diuretics should be taken
within the similar uncertainties existing for the administration of any
diuretic irrespective of its route. The most recent (and only randomised
large scale trial of diuretics in decompensated heart failure) suggest no
substantial clinical difference between dose size or frequency of
administration of intravenous diuretics for decompensated heart
failure[4]. There is no reason to suspect that this lack of clear efficacy
of any single intravenous diuretic regime should not equally apply to
subcutaneously administered furosemide.
It is additionally not unusual within the evidence based practice of heart
failure to extrapolate evidence into populations not represented within
that evidence e.g. the majority of ACEI and B blocker trials have
populations entirely unrepresentative of clinically encountered
populations[5].
5 Clinical expertise and patient values
Heart failure is not a diuretic deficiency disease. Therefore the use of
increasing doses of diuretics, their need for titration, measures of
their success and the need for other cardiac and non-cardiac interventions
to reduce symptoms should all occur within the framework of a multi-
disciplinary heart failure programme (irrespective of the route of
administration of the augmented diuretic)[1,3]. Our own practice
specifically with regard to subcutaneous diuretics is to use professionals
skilled in the management of congestive symptoms to regularly titrate the
dose of subcutaneous diuretics until a pre-specified goal or end point is
reached. Weight reduction is only one feature of this assessment. It
should be noted that in a registry of over 100,000 patients hospitalised
with heart failure one third of patients lost < 2.3 Kg and 16% gained
weight over their entire hospitalisation [2].
While we agree with the authors that there is a need for further
evaluation of the use of subcutaneous fursoemide in the management of
advanced heart failure (indeed we are seeking to add to the evidence base
in this area), we feel that it may be unhelpful to isolate only this area
of heart failure management for comment. We hope that contextualising the
editorial's concerns (within the available knowledge of current heart
failure practice) will ensure the continued use of this route of
administration to afford patients' choice and control in the management of
their progressive chronic illness.
References
1 Hunt SA, Abraham WT, Chin MH, Feldman AM, et al. 2009 Focused update
incorporated into the ACC/AHA 2005 Guidelines for the Diagnosis and
Management of Heart Failure in Adults A Report of the American College of
Cardiology Foundation/American Heart Association Task Force on Practice
Guidelines Developed in Collaboration With the International Society for
Heart and Lung Transplantation.. Circulation. 2009;119:1977-2016,
2 Gheorghiade M, Filippatos G. Reassessing treatment of acute heart
failure syndromes: the ADHERE Registry. European Heart Journal Supplements
(2005) 7 (Supplement B), B13-B19
3 Dickstein K, Cohen-Solal A, Filippatos G et al. ESC guidelines for the
diagnosis and treatment of acute and chronic heart failure 2008: the Task
Force for the diagnosis and treatment of acute and chronic heart failure
2008 of the European Society of Cardiology. Developed in collaboration
with the Heart Failure Association of the ESC (HFA) and endorsed by the
European Society of Intensive Care Medicine (ESICM). Eur J Heart Fail.
2008 Oct;10(10):933-89.
4 Fonarow GC Comparative Effectiveness of Diuretic Regimens. N Engl J Med
2011; 364:877-878
5 Mattie J. Lenzen1,*, Eric Boersma1, Wilma J.M. Scholte op Reimer et
al. Under-utilization of evidence-based drug treatment in patients with
heart failure is only partially explained by dissimilarity to patients
enrolled in landmark trials: a report from the Euro Heart Survey on Heart
Failure. European Heart Journal (2005) 26, 2706-2713
The introduction of a novel scheme in Weston-super-Mare described by Abel et al.,[1] which utilises a health care mentor to assist palliative care patients identify supportive networks within their communities and seeks to foster the development of compassionate community networks is to be congratulated. While the scheme is undoubtedly innovative in a palliative care setting a comparable model was initiated in a generalist commun...
The introduction of a novel scheme in Weston-super-Mare described by Abel et al.,[1] which utilises a health care mentor to assist palliative care patients identify supportive networks within their communities and seeks to foster the development of compassionate community networks is to be congratulated. While the scheme is undoubtedly innovative in a palliative care setting a comparable model was initiated in a generalist community health care setting in Scotland almost a decade ago. The WHO Europe Family Health Nursing Pilot in Scotland[2] was supported by the delivery of an educational programme by the University of Stirling from 2001-2005. The pilot was part of a wider European initiative developed from the recommendations of HEALTH 21.[3] Assessment and documentation used by nursing staff in the pilot was based on the Calgary Family Assessment Model [4] and included the use of genograms and ecomaps. There have been several published evaluations of the Family Health Nursing Pilot and a conceptual model of Family Centred Health Care developed.[2,5,6,7] Congruent with compassionate communities the emphasis of this model is to shift the focus from an individual to a community perspective. Whilst it is clear that the authors view the use of health care mentors as only the first step in developing autonomous community networks, they may perhaps draw parallels from the Family Health Nurse Pilot to facilitate development of their current scheme in Weston-super-Mare.
1.Abel J, Bowra J, Walter T, Howarth G. Compassionate community networks: supporting home dying. BMJ Support Palliat Care 2011; 1:129-133.
2. Scottish Executive. The WHO Europe Family Health Nursing Pilot in Scotland Final Report. Edinburgh: Scottish Executive 2006.
3. World Health Organisation (WHO). Europe HEALTH21: Health for all in the 21st Century. Copenhagen: WHO Europe 1998.
4. Wright L, Leahey M. Nurses and Families: a guide to family assessment and Intervention. Third edition. Philadelphia: FA Davis Company 2000.
5. MacDuff C, West BJM. An evaluation of the first year of family health nursing practice in Scotland. International Journal of Nursing Studies 2005; 42:47-59
6. Murray I. Family Health Nurse Project--An Education Program of the World Health Organization : The University of Stirling Experience Journal of Family Nursing 2008;14(4):469-485
7. Parfitt B A, Cornish F, Whyte L, Van Hooren M. Family Centred Health Care: The Contribution of Family Health Nurses. An Evaluation of the Family Health Nurse Role, Phase 2: School of Nursing, Midwifery and Community Health, Glasgow Caledonian University 2006.
Conflict of Interest:
I am employed by the University of Stirling but I was not a member of the institution during the Family Health Nurse Pilot.
We are grateful for the opportunity to respond to Chu and Percy's
interesting comments on our paper. We accept that older and younger age
may be associated with more medical problems in mothers and this could
explain some of the higher mortality in bereaved parents versus non-
bereaved parents, however the increased mortality findings were
demonstrated for fathers as well as mothers. Although the age of the
mother may ex...
We are grateful for the opportunity to respond to Chu and Percy's
interesting comments on our paper. We accept that older and younger age
may be associated with more medical problems in mothers and this could
explain some of the higher mortality in bereaved parents versus non-
bereaved parents, however the increased mortality findings were
demonstrated for fathers as well as mothers. Although the age of the
mother may explain some of the variation, there must be additional factors
which explain some of the excess mortality. Regarding the consolidation of
stillbirth and infant death records, we found that there was no difference
in mortality rates between those who experienced stillbirth and those who
experienced infant death. We therefore felt it was appropriate to combine
the data from these groups. In addition, the association between age of
child at time of death and impact on the parent is far from certain, as
reported by in previous studies such as Anderson (2005), Engelkemeyer
& Marwit (2008) and Hazzard, Weston and Gutterres (1992). We have
additional manuscripts under review which will further support the view
that grief following the loss of a child is unrelated to the age of the
child at the time of their death. Finally, Chu and Percy suggest that an
alternative sampling method would yield more data. The limitation of the
Scottish sample is due to the protocols followed by the Scottish
Longitudinal Study and as such, the authors were restricted to the data
made available by this service. Sampling higher than 5.3% of the Scottish
population is not currently possible, unfortunately.
We thank Chu and Percy for their comments on this research and for their
insight into possible alternative explanations for the excess mortality in
bereaved parents.
References
Anderson, M., Marwit, S. J., Vandenberg, B., & Chibnall, J. (2005).
Psychological and religious coping strategies of mothers bereaved by the
sudden death of a child. Death Studies, 29(9), 811-826.
Engelkemeyer, S., & Marwit, S. J. (2008). Posttraumatic growth in
bereaved parents. Journal of Traumatic Stress, 21(3), 344-346.
Hazzard, A., Weston, J., & Gutterres, C. (1992). After A Childs Death
- Factors Related to Parental Bereavement. [6-50 months]. Journal of
Developmental and Behavioral Pediatrics, 13(1), 24-30.
We read with interest the article by Harper et al in the last edition
of this journal (2011;1:306-309). By establishing a correlation between
infant mortality and the increased mortality risk of the parents, the
article speaks, albeit indirectly, to the possible links between emotional
and physical states - a topic of important and growing interest. However,
two points present themselves about the authors' analysis - the f...
We read with interest the article by Harper et al in the last edition
of this journal (2011;1:306-309). By establishing a correlation between
infant mortality and the increased mortality risk of the parents, the
article speaks, albeit indirectly, to the possible links between emotional
and physical states - a topic of important and growing interest. However,
two points present themselves about the authors' analysis - the first is
statistical, the second conceptual.
Harper et al are direct about possible confounding factors for which
they were unable to control but which may nullify any causal link implied
by the statistical correlation they identify (p308). However, given their
use of census data, there is one possible confounding factor that they
might have controlled for - age of parent at the time of birth.
Harper et al imply that the small difference in mean age between the
comparison and control group means age should not raise concern. However,
if parent and infant mortality are more likely among both older and
younger parents, the difference in mean age might be minimal or invisible,
even though the casual implications of the chi-squared correlation would
be weakened. Previous research suggests that such a two-sided confounding
factor may exist for age. Young births, such as teenage pregnancies, have
been linked to worse outcomes for both mother and child (see, for example,
citations in Wellings and Kaye, 1999). Births to older parents are
similarly more likely to face complications and older parents would
naturally be closer to average life expectancies.
The results presented by the authors point towards this possibility.
The 'bereaved' group manifests a wider range of ages than the 'control'
group. The effect is most significant in the English data - the smallest
difference in standard deviations exists for the 1981-1991 cohort, which
is between 8.4 and 5.7. Since the English data manifest a higher relative
risk, it is worth exploring whether age may be such a confounding factor.
Year of birth might also be included in the analysis, to control for the
possibility that both infant and parent mortality risks may be shifting
over time.
The second concern is a conceptual one. If a ceteris paribus causal
link exists between the death of one's children and an increased mortality
risk for parents, it seems likely that this is linked to the trauma caused
by the loss of a loved one. But emotional bonds are not all equal - on
average, they might be expected to become stronger over time. From this
perspective, the average relative risk of parent mortality after a
miscarriage should be lower than death in childbirth, which would be lower
in turn than death in early infancy and the death of a young child.
The Dutch study (Li et al, 2003) referenced by Harper et al bears out
this principle - the relative risk of parent mortality in their study is
higher for a child dying aged between 1 and 11 months than a child dying
at less than one month. The analysis by Harper et al can be extended to
explore this hypothesis. Parents suffering stillbirths and infant
mortalities are currently combined into a single category - by splitting
the two groups, differences might be observed. The accidental inclusion of
parents whose child dies aged older than one in the 'non-bereaved' group
would bias effects downward, but differences may still be observable.
For the Scottish data, ethical non-identification reasons and small
sample sizes prevented such subgroup analysis (p307). However, the small
sample size resulted by design - the choice of 20 birthdays or 5.3% of the
population. Had the authors chosen a larger set of birthdays, it may have
been ethically possible to analyse the two subgroups in greater detail. No
such restriction applied to the English data.
The authors are to be congratulated on their research and we agree
with them that further statistical and case study work is required. We
hope that the suggestions are amenable to straightforward exploration on
similar datasets to those used by the authors.
Dr Wing Chu, ST1 Doctor in Palliative Care; Christian Percy,
Statistical Consultant
References
Wellings, K. and Kane, R. (1999), 'Trends in teenage pregnancy in England
and Wales: how can we explain them', J R Soc Med 1999;92:277-282
Many patients are ill because of wrong choices they made in their life (eg smoking, excessive drinking, poor diet etc). How are we going to ensure that they make the 'right choices' with their individual budgets particularly if direct cash payments are made? How do we prevent the exploitation of these individuals? This is not a 'paternalistic 'concern. The checks and balances needed would be no more different from havin...
Dear Editor,
I am delighted to read Abel et al's conceptual paper regarding a social model of care, utilising a compassionate communities framework. As the paper has outlined, Milford Care Centre, Limerick, Ireland commenced a Compassionate Communities pilot project in 2011. This project aims to empower communities and reduce fear and stigma associated with death, dying, loss and care. The project is being led...
We would like to thank Drs Satchithananda, Hookey and Sister Ingram for their interest in our editorial. We welcome this opportunity to respond. We framed our discussion in the setting of left ventricular systolic dysfunction as this is where the robust evidence base for heart failure therapy has evolved. The evidence base for effective therapy for the clinical syndrome of heart failure with preserved systolic functio...
We read the editorial concerning the use of subcutaneous furosemide in heart failure with interest. We feel that there is a substantial opportunity for misinterpretation of the editorial by readers not as familiar with the issues raised as the eminent authors themselves. This particularly relates to: 1 The heart failure syndrome It is important to emphasize that the editorial relates to the treatment of congestive symptom...
We are grateful for the opportunity to respond to Chu and Percy's interesting comments on our paper. We accept that older and younger age may be associated with more medical problems in mothers and this could explain some of the higher mortality in bereaved parents versus non- bereaved parents, however the increased mortality findings were demonstrated for fathers as well as mothers. Although the age of the mother may ex...
We read with interest the article by Harper et al in the last edition of this journal (2011;1:306-309). By establishing a correlation between infant mortality and the increased mortality risk of the parents, the article speaks, albeit indirectly, to the possible links between emotional and physical states - a topic of important and growing interest. However, two points present themselves about the authors' analysis - the f...
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