Displaying 1-10 letters out of 12 published
Withdrawal of life sustaining medical devices at the end of life.
I read with interest the letter from McKenna and others describing the evolution of an algorithm to aid decision making in the withdrawal of life-sustaining medical devices (LSMDs) (1). The briefly described scenario involving the development of cancer in a patient with a left ventricular assist device (LVAD) as a bridge to transplantation is familiar to us in cardiovascular medicine, as is the resulting need for decision making in the moment which often becomes the default position.
While the occurrence of this comorbidity could not have been anticipated in this transplant candidate, such events will be increasingly encountered in heart failure patients supported for prolonged periods with LVADs as destination therapy, and given the exponential rise in implant rates, this situation will be commonplace in those surviving with implantable cardioverter defibrillators (ICDs).
While the proposed decision tree provides a useful checklist for LSMD withdrawal, my impression is that at initiation, the protocol appears largely reactive. The flow chart seems to imply that any discussion concerning device withdrawal is broached for the first time at the point of an unanticipated patient request or when the device recipient is subject to what may be a rapidly evolving irrecoverable clinical situation. Any notion of advance care planning is described only in the setting of assessment of capacity relevant to the Mental Capacity Act.
Given the prognostic ambiguity intrinsic to the heart failure disease trajectory, advance care planning might offer significant advantage to these patients and their families encumbered with such uncertainty. While the use of advance directives by those with heart failure is increasing, specific device related decision making remains the exception (2,3). However, preparedness planning for end of life care incorporating palliative care consultations has been shown to be of benefit in those being considered for LVAD therapy (4), and prospective pre-implantation discussion about this issue is mandated in the in the position statement on ICD deactivation from the Heart Rhythm Society in the United states and supported by the European Heart Rhythm Association (5). Such a dialogue would also be necessary as part of the description of the benefits and burdens of device therapy required of an ethically framed valid informed consent process and central to the premise of shared decision making in advanced heart failure (6).
Having been opened prior to device implantation, it would seem appropriate to revisit these end of life care discussions at intervals during follow up, perhaps reducing the complexity of the management of the inevitable crises, and avoiding some of the dilemmas linked to clinical situations such as that described (7). The authors may wish to consider incorporating an element referring to device related advance care planning early in their proposed algorithm.
References 1) McKenna M, Wrightson N, Regnard C, Clark S. Life-sustaining medical devices at the end of life. BMJ Support Palliat Care doi:10.11.1136/bmjspcare-2012-000364. 2) Habal MV, Micevski V, Greenwood S. et al. How aware of advanced care directives are heart failure patients, and are they using them? Canad J Cardiol 2011, 27:376-81. 3) Tajouri TH, Ottenberg AL, Hayes DL, Mueller PS. The use of advance directives among patients with implantable cardioverter defibrillators. Pacing Clin Electrophysiol. 2012 , 35:567-73. 4) Swetz KM, Freeman M, AbouEzzeddine OF. et al. Palliative medicine consultation for preparedness planning in patients receiving left ventricular assist devices as destination therapy. Mayo Clin Proc 2011, 86:493-500. 5) Lampert R, Hayes DL, Annas GJ. et al. HRS Expert Consensus Statement on the Management of Cardiovascular Implantable Electronic Devices (CIEDs) inpatients nearing end of life or requesting withdrawal of therapy. Heart Rhythm. 2010, 7:1008-26. 6) Allen LA, Stevenson LW, Grady KL. et al. Decision making in advanced heart failure: a scientific statement from the American Heart Association. Circulation 2012, 125:1928-52. Kirkpatrick JN, Fedson SE, Verdino R. Ethical dilemmas in device treatment for advanced heart failure. Curr Opin Support Palliat Care. 2007, 1:267-73.
Conflict of Interest:
Choice of oral transmucosal fentanyl for breakthrough cancer pain
I am perplexed why this paper by Jandhyala and Fullarton has concluded that "FBT (fentanyl buccal tablet) may have some efficacy advantages over ODT (sublingual oral transmucosal fentanyl) and OTFC (compressed lozenge oral transmucosal fentanyl)..." in the management of breakthrough cancer pain when a paper published at the same time in another journal (Smith H, A comprehensive review of rapid-onset opioids for breakthrough pain, CNS Drugs 2012;26(6)509-535)concludes that "The findings of this review suggest that the efficacy and safety of the approved rapid-onset opioids are comparable". Some concerns arise. Jandhyala and Fullarton in their introduction quote the Portnoy definition of cancer breakthrough pain as "typically rapid in onset (within a few minutes) and short in duration (around 30 min", go on to show)that FBT produces similar levels of pain relief as ODT within that period but then base their conclusions on pain relief up to 60 minutes after pain initiation. Further, the differences in pain intensity when FBT and ODT are considered after 60 minutes, for example, are 0.75. Under the "Contributors" section, Dr Jandhyala is listed as undertaking the clinical interpretation of the data. In his clinical experience is such a change in pain score clinically meaningful? One last concern. This paper concludes that FBT may have some advantages over the other fentanyl preparations (in contrast to the conclusions of Smith quoted above). As this paper was funded by Cephalon, the manufacturer of FBT and the lead author is the Interim Medical Manager of that company only very definite data should have allowed an endorsement of their product to avoid potential claims of a conflict of interest.
Conflict of Interest:
Opinions of patients with cancer on the relative importance of place of death in the context of a 'good death'
Re: Opinions of the patients with cancer on the relative importance of place of death in the context of 'good death'. By: Melaine Waghorn, Holly Young and Andrew Davies: BMJ Support Palliative Care 2011:1 310-314
I am grateful for the opportunity to respond to Waghorn et al, 2011 study on opinion of patient with cancer on the relative importance of place of death. Having looked at the four highlighted domains associated with a 'good death' stated as: ? Being treated as an individual, with dignity and respect ? Being without pain and other symptoms ? Being in familiar environment ? Being in the company of close family and/or friends If the patient fit into the above domains, I think the place of death is not very important as per the result of this study. I would also add to the above domains that, no matter the place a patient may prefer to die what is important is that every individual want to have a peaceful death, settling/making restitution, forgiving and being forgiven for any wrongs with family members/friends, and making right standing with God. Fukui, Kawagoe & Masako (2003) stated that most patients prefer home death or hospice, despite these facts, most cancer patients in the United Kingdom die in hospital bed. Most people currently die in hospital despite the vast majority saying they would prefer to die at home in familiar surroundings, close to family and friends (Lansley, 2010). From the above citations,it means that their wishes are not very important. Taking one site (setting) for the study does not give a result that could be generalized. This is because most patients in some part of the world diagnosed with advanced cancer do not see any need of going to the hospital for treatment. They/family members feel that death is eminent as such spending money in hospital bed is a waste. Evidence shows that patients make fewer visits to their Doctors after psychological interventions (Chiles et al, 2006). The setting should have included homes, nursing homes and palliative/hospice centers.
The study may not be well applied to most part of the world due to either non-availability of nursing homes or poverty to really have options to where they would prefer to die. To the patient what is important is getting quality care in the last days of life. Reference Chile J. A. et al 2006. The impact of psychological interventions on medical cost offset: a meta-analytic review clinical psychology: Science and Practice, 6:2,204-220 Fukui S, Kawagoe H, and Masako S. 2003. Determinants of the place of death among terminally ill cancer patients under home hospice care in Japan. Palliative Med. 17: 445-53 Lansley, A. 2010. Patients to have choice of where to die. Health Service Journal. From: http://www.hsjjobs.com/?wTmc_id=HSJ
Akon E. Ndiok: Department of Nursing Science, University of Calabar, Calabar. Nigeria.
Conflict of Interest:
End of Life discussion in Heart Failure
This study generated discussion in our hospice about the importance of breaking bad news well and also the importance of these discussions in non cancer related disease. It was interesting the study showed 'people with heart failure had engaged in much less discussion about their condition, and most did not recall a specific conversation with their doctor about their prognosis'. I recently reviewed the literature on chronic heart failure and a recurrent theme is that patients with chronic heart failure have frequent thoughts about death both during acute exacerbations and also in more chronic stable phases of their illness. As clinician's we need to be aware of the predictors of end stage heart failure and preferably embark on end of life conversations with our patient's before this time. One study (Setoguchi S et al. Hospitalizations in patients with heart failure. J Am Coll Cardiol. 2009;54(18):1703) found approximately one third of patients die within a year of an admission for heart failure and mortality figures are similar to that of bowel and ovarian cancer so it is crucial to discuss advance care planning and prognosis which can help alleviate patient fears, address concerns and overall aim for better palliative care in the patients preferred setting.
Conflict of Interest:
Have no fear, morphine is here!
I welcome this small but useful study highlighting the fear and reluctance of patients and practitioners in using morphine in the setting of chronic heart failure. Over 50% of chronic heart failure patients suffer from pain and caution is needed with nearly all analgesics- NSAIDS and COX2 are contraindicated, neuropathics agents can trigger arrhythmias, steroids exacerbate salt and water retention, soluble drugs such as co- codamol can contain a high salt content,and transdermal analgesics may be limited with significant oedema , so not only is morphine useful for managing dyspnoea in chronic heart failure but it may be a useful medication to provide analgesia when options are limited. Clinicians need not fear morphine use as it can have excellent results for symptom control when used appropriately in this group of patients.
Conflict of Interest:
Individual budgets: Avoiding exploitation and postcode lottery
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.  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. 
Individual budgets are, in principle, a very good idea but the practicalities of implementation can make it into a white elephant .  Lessons need to be leant from the Dutch experience.
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.
Conflict of Interest:
Clarification regarding Milford Care Centre's Compassionate Communities Project
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.
Dr Kathleen McLoughlin
Conflict of Interest:
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.
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
(accessed 4 Apr 2012).
Conflict of Interest:
o Response to: 1 Subcutaneous furosemide in advanced heart failure: has clinical practice run ahead of the evidence base? James M Beattie, Miriam J Johnson BMJ Support Palliat Care 2012;2:5-6
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 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  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. 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 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 .
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
Conflict of Interest:
'Compassionate community networks: supporting home dying ': useful parallels from previous practiceThe introduction of a novel scheme in Weston-super-Mare described by Abel et al., 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 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. Assessment and documentation used by nursing staff in the pilot was based on the Calgary Family Assessment Model  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.
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