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EDITORIALS: Scott A Murray, Kirsty Boyd, Aziz Sheikh, Keri Thomas, and Irene J Higginson Developing primary palliative care BMJ 2004; 329: 1056-1057 [Full text]

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Dignity

jenny iliopoulou   (4 November 2004)

Palliative Care in the Community

Suresh Kumar   (5 November 2004)

homoeopathy for palliative care..

dinesh r.s   (8 November 2004)

Palliative Care

Colin I Guthrie   (8 November 2004)

Primary Palliative Care in Developing Countries

Mala Ramanathan   (9 November 2004)

Not for ressuscitation but For Palliative Care

Julia Riley   (9 November 2004)

Future pain for palliative care?

Giovanni Gambassi, Roberto Bernabei   (10 November 2004)

Strangers in the night

David I Jeffrey   (10 November 2004)

Re: Not for ressuscitation but For Palliative Care

Dr John Rumbold   (10 November 2004)

Palliative Care: getting home from hospital

Pamela A Levack, Helen Dryden, Fiona Paterson   (10 November 2004)

Palliative primary care: service and academic challenges

Robert K McKinley, Catherine Exley, Tim Stokes, and David Field   (20 November 2004)

Homoepathy the better palliative

Dr.Rejikumar R   (29 November 2004)

Dignity 4 November 2004
jenny iliopoulou, consultant plastic surgeon Athens -KAT gen,.hospital Send response to journal: Re: Dignity	I am plastic surgeon specialized in burn injury and many times I faced the moral and ethical aspect and the expectations of dying people.We are not God so we could not stop a life.The Hypocrates;s rules in medicine said that we are near the patient to help him in all the phases of his illnes but what we can do related with how to help him to passed away?In Greece euthanasia is prohibited and if the relatives claims about your treatment you will go to jail(malpractice).As a human you are agree to help him but the Justice will drive you behind the bars. Competing interests: None declared
Palliative Care in the Community 5 November 2004
Suresh Kumar, Director Institute of Palliative Medicine, Calicut 673008, Kerala, India Send response to journal: Re: Palliative Care in the Community	The editorial on Developing primary palliative care by Scott A Murray et al has relevance to palliative care services in the developing world also. We have noticed that in most of the developing world with a large percentage of people in need of palliative care living below or just above poverty line, transporting the patient to the palliative care unit very often costs the family more than a fortnight's earnings. Lack of provision of a regular home care service in such situations actually amounts to denying care to a large precentage of the needy. The palliative care situation in the 'resource poor regions' of this world is characterised also by patient priorities in 'non medical' areas like psycho social (including financial) support.Over the years, we have learned that home care programs with active participation from the community, supported by trained professionals are probably the best option for providing something close to total care. Competing interests: None declared
homoeopathy for palliative care.. 8 November 2004
dinesh r.s, postgraduate student in homoeopathy trivandrum(695014) Send response to journal: Re: homoeopathy for palliative care..	This was one thing which i used to worry about when seeing people with diseases like cancer at their terminal stage.Nobody likes to be treated with all the invasive lines and tubes connected to his body in addition to the sufferings of the disease given another choice.Such patients have to be in an environment in which they are most comfortable with. There are instances when homoepathic medicines have offered such patients great palliation in terms of pain & general relief with much less financial burden.But it goes without saying that such cases have to be documented properly and adequate research has to be done before such claims.Palliative clinics for cancer using homoeopathic medicines have been set up in Kerala by the Government. drdineshrs@yahoo.com Competing interests: holistic medicine,homoeopathy.
Palliative Care 8 November 2004
Colin I Guthrie, General Practitioner 1448 Dumbarton Road, Glasgow G149DW Send response to journal: Re: Palliative Care	To suggest that General Practitioners be in the front line to provide Palliative Care is simply to totally misunderstand the changed role of General Practice in Primary Care. From the first day of 2005 most General Practitioners in the UK will have given up their out of hours commitment and the Health Boards must have made alternative on call arrangements. It is entirely correct that Genaeral Practice is responsible for 25% of the week's on call with the other 75% is being covered by the new Out Of Hours organisations. A more telling statistic is that between 6pm on a Friday and 8am on a Monday there are 62 hours of OOH cover. A lot can happen in 62 hours. In the light of these facts it is simply ludicrous to then state that 'General Practitioners are in a position to provide effective and accessible palliative care.' The patient's General Practitioner can be involved in setting up a care plan and can pass that information on to the OOH service but it is no longer possible for the vast majority of General Practitioners to be involved personally, or as a Practice, in the OOH provision of that care. As someone who has been very involved in the provision of OOH care for a number of years I have seen how complex some palliative care can become. There are times when front rooms resemble ITU units with the amount of equipment and pharmacology that the patient needs in order to be kept comfortable in their own home. Even with the best training, and on call advice, there are times when one really has to question the sense of bringing the hospice into the house. If more patients are to be given the right to die with dignity at home then there will have to be an increase in resources. More palliative care nurses and physicians will be required on an on call basis in order to provide the continuity of care and expert advice that these patients deserve. I would also like to see the specialist palliative care nurses being given more autonomy with an increase in their prescribing powers so as to avoid the current nonsense where OOH doctors must drive to a patient's house just to sign forms such as the authorisation for an increase in syringe driver rates. Competing interests: None declared
Primary Palliative Care in Developing Countries 9 November 2004
Mala Ramanathan, Associate Professor AMCHSS, SCTIMST 695011 Send response to journal: Re: Primary Palliative Care in Developing Countries	The need for involvement of primary care physicians and nurses in providing palliative care for terminally ill patients is well recognised. This is particularly so in resource poor settings in countries like India where no alternative sources are available in many rural settings. Even when resources are available, both the patients and care givers may prefer home based care so as to keep the patients within the extended family circle, especially when they are terminally ill. This actually helps both the patient and the care givers. It is possible that the primary health care providers need particular training/assitance to deal with complexities cancer or any other terminally ill person care, but a good mechanism for communication - through telephones/cellular phones between the primary care physicians/nurses and the expertise available at the tertiary level can help to mitigate this problem. With the technological revolution in communication happening in India, this should be feasible even with limited resources. Competing interests: None declared
Not for ressuscitation but For Palliative Care 9 November 2004
Julia Riley, consultant Palliative Medicine Royal Marsden Hospital Fulham Rd London SW3 6JJ Send response to journal: Re: Not for ressuscitation but For Palliative Care	Developing primary palliative care Editor – I applaud the article by Murray et al proposing that people with terminal conditions should be able to die at home with dignity. Perhaps they fall short of initiating a practical, pragmatic, less idealistic, cost neutral solution. Once a patient has been identified as palliative by their criterion “Would I be surprised if my patient were to die in the next 12 months?” a simple procedure should compulsorily take place. A Palliative Care Management form should be completed by the patient’s general practitioner. This form should included details of the diagnosis, prognosis and management plans. This form should be emailed/faxed to the out of hour’s provider – the “unscheduled care services” to which this article refers. Additionally, any scheduled drugs that may be required to keep the patient at home, should be prescribed and delivered to the patient’s home. If these two simple procedures became part of a National plan, many (not all) of the problems that arise in the community would be overcome. The Gold Standards framework and development of education and research programs are commendable. The authors point out that these require adequate time and resources. And I would add the willingness of the health care professionals to participate. In a health system where resources are limited, surely improving efficiency and using existing resources is where this program should begin. In hospital medicine completion of a “Do Not Resuscitate” (DNR) form is mandatory. Completion of the equivalent Palliative Care Management (PCM) in the community form should be compulsory too. It is only by compulsorily initiating a procedure where accountability and responsibility can be identified, that terminally ill patients will be able to access appropriate palliative care. Competing interests: None declared
Future pain for palliative care? 10 November 2004
Giovanni Gambassi, Associate Professor Università Cattolica Sacro Cuore, 00168 Rome, ITALY, Roberto Bernabei Send response to journal: Re: Future pain for palliative care?	The editorial by Murray and others highlights the gap that separates the current understanding and public opinion’s support about palliative care from a realistic approach as to how develop services that can meet the expectations of people who have palliative care needs in a timely and efficient way. In a time when medicine is metabolizing a shift away from its traditional paradigm,(1) the scientific community is filling-in the knowledge gap,(2) in a time when global organizations are spreading the concept and providing a contextual framework,(3) and the public at large is speaking out to feel empowered, in this times we do not seem to be able to get it done. If a more factual involvement of primary care professionals in the provision of end of life care for most patients is intuitively an approach with good prospects for succeeding, there is still a long road ahead. It should be realized that there are substantial variations across countries and within countries, that there is probably not a single model that fits all. Likewise, an approach that is both culturally- and ethnic/racial sensitive is becoming an societal imperative.(4) As far as Italy is concerned, to state that “..primary care professionals have the potential and ability to provide end of life care for most patients..” is simply untrue, nor do we have specifically-trained palliative care specialists to eventually get advice from. In a country where traditionally strong familiar bounds were taken as a surrogate for an ever lasting choice to die at home, there is an increasing demand for palliative care within hospices. Accordingly, the Ministry of Health has outlined a plan to increase the number of hospices from the current 80 to over 250 by the year 2008.(5) At the same time, however, the costs for analgesic medications such oxycodone, tramadol and the combination between codeine/paracetamol will be entirely covered beginning next month. The word is getting across, the lexicon is being refined, palliative care is making its way. Yet, the success of it will continue to reside in country- or regional-specific approaches provided adequate legislation, training and resources. (1) Morrison RS, Meier DE. Palliative care. New Engl J Med 2004 ;350 :2582-90 (2) Pantilat SZ, Steimle AE. Palliative care for patients with heart failure. JAMA 2004;291:2476-82 (3) World Health Organization. Palliative care: the solid facts. Copenhagen: WHO, 2004. (4) Crawley LM, Marshall PA, Lo B, Koenig BA. Strategies for culturally- effective end-of-life care. Ann Intern Med 2002;136:673-9 (5) www.ministerosalute.it accessed November 9, 2004 Competing interests: None declared
Strangers in the night 10 November 2004
David I Jeffrey, Consultant palliativemedicine Western General Hospital, Crewe Rd, Edinburgh EH4 2XU Send response to journal: Re: Strangers in the night	Murray SA et al describe some of the challenges faced by those wishing to provide palliative care in the community. (1) Patients dying at home want a doctor or nurse that they know and trust not merely “a reassuring professional presence” (2). Providing such personalised continuity of care is not possible within present arrangements for primary care at nights and weekends . A sad consequence is that relatives have to negotiate a series of hoops to achieve a home visit from a general practitioner or nurse or , in desperation ,bring palliative patients to hospital where they may wait for the attention they need. Care of the dying is one marker of a civilised society; we need to develop ways in which dying patients and their families can “fast track” the present system and receive appropriate care in the setting of their choice. The Gold Standards Framework is a step in the right direction we need the determination to implement its ideals. Competing interests: None declared
Re: Not for ressuscitation but For Palliative Care 10 November 2004
Dr John Rumbold, n/a West Midlands Send response to journal: Re: Re: Not for ressuscitation but For Palliative Care	The last time I was on crash teams, there were many patients initially given CPR which from the notes were obviously not candidates for resuscitation. Because of the need to discuss this sensitive topic with patients the decision was not made formally and documented but made on the hoof after several minutes of CPR. I wonder how many colleagues have had the same experience? After the adverse publicity of DNAR orders it is a very tricky subject to broach with all the implications to the patient and relatives that you are "giving up" on them. Competing interests: None declared
Palliative Care: getting home from hospital 10 November 2004
Pamela A Levack, Consultant in Palliative Medicine Hospital Palliative Care Team, Ninewells Hospital, Dundee DD1 9SY, Helen Dryden, Fiona Paterson Send response to journal: Re: Palliative Care: getting home from hospital	Murray et al,1 highlights the need to make community palliative care available to more patients, including those with end-stage non-malignant disease. From a hospital viewpoint, arranging adequate community services for frail, debilitated patients, many of whom live alone, may be difficult. We report the reality of achieving community care for patients discharged from a cancer centre. Data from 2000 consecutive patients referred to a hospital palliative care team [HPCT], was prospectively collected over a five-year period. Outcome was categorised as: discharge home [patient's or carer's]; transfer to another hospital or nursing home; transfer to a specialist palliative care unit; died in the acute hospital [Ninewells] or referral back to the original medical or surgical team. Performance status, using the Palliative Performance Scale [PPS©]2 was determined by the HPCT at referral [Figure 1]. 96% of patients had cancer and 4% non-malignant, end-stage disease. The typical patient referred was in their late 60's [median 69] and able to do little for themselves [median PPS 50%]. 35% [703] were bed bound all or most of the time, and 38% [755] lived alone. 31% [619] were discharged home, 28% [568] died in the acute hospital; and 28% were transferred to another place of care [458 to a hospice, 110 to a district or community hospital or nursing home]. 12% [245] were discharged to the referring team as their general condition or symptoms improved. Patients discharged home had a much better performance status than those who did not [Figure 2]. The probability of getting home with a performance status of 60 or more, was better than 1 in 2 [55%; 343/619], but as performance status fell to 40 or less, the probability fell to less than 1 in 10 [9.5%; 67/703]. The physical needs alone, of many patients with advanced disease are considerable. As Murray1 states, current community palliative care services are not sufficiently resourced to offer a serious alternative to acute hospital care for the majority. Murray SA, Boyd K, Sheikh A, Thomas K, Higginson IJ, Developing primary primary palliative care. BMJ. 2004; 329: 1056-7. Anderson F, Downing GM, Hill J, Casorso L and Lerch N. Palliative Performance Scale [PPS]: A new tool. J Palliat Care 1996;12[1]:5-11 Figure 1. Palliative Performance Scale© [PPSv2] PPS level ambulation Activity Evidence disease Self-care intake Conscious level 100% Full Normal. No evidence disease full normal full 90% Full Normal. Some evidence disease full normal full 80% Full Normal with effort Some evidence disease full normal/reduced full 70% Reduced Unable to do normal job Significant disease full normal/reduced full 60% Reduced Unable to do housework. Significant disease occasional assistance normal/reduced full or confusion 50% Mainly sit/lie Unable to do any work. Extensive disease considerable assistance normal/reduced full or confusion 40% Mainly bed Unable to do most activity. Extensive disease mainly assistance normal/reduced full or drowsy +/- confusion 30% bed bound Unable to so any activity. Extensive disease total care normal/reduced full or drowsy +/- confusion 20% bed bound Unable to do any activity, Extensive disease total care minimal/sips full or drowsy +/- confusion 10% Bed bound Unable to do any activity Extensive disease total care mouth care only drowsy or coma +/- confusion 0 death © copyright 2001 Victoria Hospice Society Figure 2. Outcome after referral to Specialist Palliative Care Team in relation to patient performance status [PPS] outcome Competing interests: None declared
Palliative primary care: service and academic challenges 20 November 2004
Robert K McKinley, Clinical Senior Lecturer in General Practice Department of Health Sciences, University of Leicester. LE5 4PW, Catherine Exley, Tim Stokes, and David Field Send response to journal: Re: Palliative primary care: service and academic challenges	We have recently completed a project which compared the end of life primary care of people with cancer and people with chronic cardio respiratory disease, the results of which illuminate aspects of Murray et al’s editorial.(1) Our study was conducted in two general practices (one inner city and one rural/market town) in the UK which had made a commitment to improving their care of people with cancer.(2-4) While the practices had little difficulty identifying people in need of palliative care for cancer, they had great difficulty in doing so for people with chronic cardio respiratory disease. Murray et al suggest that asking oneself if a patient’s death in the following 12 months would be unexpected as a potential way of identifying people with non-malignant disease who would benefit from an early palliative care approach.(1) Whilst superficially attractive, consideration of the obverse question (‘Would I be surprised if this person with chronic cardio-respiratory disease was still alive in 12 months time?’) may be more instructive. Although we found that many fewer people who died with chronic cardio respiratory disease than people with cancer were in receipt of palliative care from the practices, the range of duration of the palliative care phase was much greater for people with cardio respiratory disease (up to 401 days).(3) While early palliative care may facilitate the relief of ‘existential distress’(1) it may also cause distress. Some people with cardio-respiratory disease and their lay-carers told us that when GPs tried to convey information regarding their likely prognosis this was equated with the distressing message that ‘nothing more could/can be done’ for the underlying disease with which they had previously been able to live.(2,4) An unexpected finding from the project was the impact of the redesign of cancer services. One practice reflected that it now seldom saw people with cancer because the cancer hospital took over the care of people with cancer thus displacing primary care from its traditional and desired role in end of life care. Provision of palliative care in primary care is thus threatened by the redesign not only of out of hours primary care but also secondary care.(2) While we agree that whilst a palliative care approach has its attractions, it is not clear that identifying an end of life phase is possible or appropriate for people with chronic cardio respiratory disease. Nor is it known whether identification of such a phase increases or decreases distress. Such uncertainty at the core of the provision of palliative care for non-malignant disease urgently requires research, research which can only be answered from primary care and is a question which would form the bedrock of a palliative primary care academic base. References 1. Murray SA, Boyd K, Sheikh A, Thomas K, Higginson IJ. Developing primary palliative care. BMJ 2004;329:1056-7. 2. Exley, C., Field, D., McKinley, R. K., and Stokes, T. An evaluation of primary care based palliative care for cancer and non- malignant disease in two cancer accredited practices in Leicestershire. 2003. Leicester, Department of Epidemiology and Public Health, University of Leicester. 3. McKinley, R. K., Stokes, T., Exley, C., and Field, D. Care of people dying with malignant and cardio-respiratory disease in general practice. Br. J Gen. Pract. 2004. In Press 4. Exley, C., Field, D., Jones, L., and Stokes, T. Palliative Care in the Community for Cancer and End-stage Cardio-respiratory disease: The views of patients, lay-carers and health care professionals. Palliat Med. 2004. In Press Competing interests: None declared
Homoepathy the better palliative 29 November 2004
Dr.Rejikumar R, Homoeopathic Physician Homoeopathy Home Speciality Healthcare & Research Clinic, Murukkumpuzha,695008 Send response to journal: Re: Homoepathy the better palliative	When the question of providing palliative care, arises we are often clouded by the thought that our only consideration is to cut short the pain magnitude. But if we think from the patient's side much could be done if we start lending a sympathetic ear to understand his whole anxieties,worries rather than his physical agonies. Surely then with the help of homoeopathic remedies it will be possible to give him support to the extent of his well being even if the prognosis says "he will survive only for hardly one month with the best possible therapy.." Competing interests: Homoeopathy