A palliative care training programme for GP registrars - a UK perspective

R Charlton

HK Pract 2005;27:23-29

Summary

Undergraduate and postgraduate education and training in the care of the dying and bereaved is inadequate worldwide. This is despite the foundation of the modern hospice movement in the UK in the 1970s and its wider dissemination. It has implications for those doctors working in both primary and secondary care and this paper describes a 3-day course which has been successfully run in the West Midlands, UK, since 1997 for general practitioners in training. A pre-course survey in 2003 revealed that 100% of respondents felt that they needed further training and 51.5% said that they had had no previous training in palliative care.

摘要

儘管現代臨終關懷運動於1970年代在英國出現並得到傳播，但在如何照顧臨終病人和居喪者方面， 世界各地的本科生及研究生的教育和培訓仍很不足。這對工作在基層和二級醫療機構的醫生具有意義。 本文介紹了英國西米德蘭地區自1997年以來對受訓的全科醫生所成功進行的一項為期3天的課程。 2003年進行的一項課前調查顯示，100%的應答者認他們需要進一步的培訓；51.5%的人說此前沒有接受過任何姑息治療方面的培訓。

Introduction

An annual palliative care training programme was initiated in 1997 for GP registrars (trainees) in the West Midlands, England.¹ In 2003 the programme was increased to twice yearly as the number of GP registrars in the West Midlands had risen to 250. The programme has evolved, been revised annually following completion of evaluation forms by the registrars and so refined in relation to both content and teaching methods. This paper seeks to share that experience and how it is possible to improve the knowledge and skills of relatively junior doctors in an important and sometimes unintentionally neglected area of training. There is considerable evidence that training of both undergraduates and postgraduates in palliative care is inadequate world-wide. However, in itself this would comprise an extensive systematic review paper and is not the intention of this paper, but rather to provide a short summary. The inadequacy of knowledge and skills in palliative care is traced from undergraduate training through to postgraduate training. Then the training programme is described followed by the results of a pre-course survey to ascertain the need for the course. First, it will be helpful to the readers to remind them of some of the many definitions of palliative care.

Definitions of palliative care

There have been many attempts at formulating a concise definition of palliative care. One often quoted is the World Health Organisation (WHO) definition (1990): "Palliative care is the care of patients with active, progressive, far-advanced disease and a limited prognosis, and for whom the focus of care is the quality of life".

In April 1991 a joint working party of the Royal College of General Practitioners in London and the Association for Palliative Medicine was established and formulated a working definition for Palliative Medicine² within a booklet, "Palliative Medicine Curriculum". The working party discussions concluded that the definition should be extended to include other aspects of death and bereavement. In particular, palliative medicine is applicable to all forms of illness in their palliative and terminal phases, especially AIDS infection and neurological diseases, not just patients with malignancy. Thus, the following definition complements and extends the WHO definition of palliative care.

"Palliative medicine is the medical care of patients with advanced and progressive disease for whom the focus of care is quality of life and in whom the prognosis is limited, but may be a number of years. It includes consideration of the families' needs before and after the patient's death".

A distinction can also be made between the terms palliative medicine and palliative care. Palliative medicine is referred to as the speciality practised by doctors, whereas palliative care is the care provided by a multidisciplinary team of doctors, nurses, therapists, social workers, clergy and volunteers.³

Undergraduate training in palliative care

Most medical schools have five-year undergraduate curricula where there are both many and increasing fields competing for inclusion on the curricula. Palliative care is therefore one of many possible fields that could be included. However, if it is borne in mind that a topic such as obstetrics may occupy up to 10 weeks on a traditional undergraduate curriculum and palliative care one to two days, then there should be concern for the medical educationalist. Why? In many countries the birth rate approximately equals the death rate and knowledge and skills are required to both safely enable the birth of a human being and their eventual terminal decline and exit from the world with a minimum of suffering and what is sometimes referred to as a "good death".⁴ Both obstetrics and palliative care are recognised as specialist areas and in view of this well-known statistic it would seem appropriate that similar durations in undergraduate curricula are devoted to each field to equip tomorrow's doctors.

Professor David Field in the UK surveyed the undergraduate curricula of the then 27 medical schools in 1983⁵ and 1994⁶ and found the mean number of hours devoted to palliative care teaching to be 6 hours (range 1-13) and 13 hours (range 2-76) respectively. Therefore at best medical schools were providing a maximum of two and a half days teaching relating to dying, death and bereavement. There is no evidence to suggest that the mean number of hours has increased significantly since then and this is despite the modern hospice movement being founded in the UK in the 1970s and attributed to the setting up of St Christopher's Hospice in London by Dame Cecily Saunders. Neither, is it an educational phenomenon that is confined to the UK. A more recent example from 2001 is from Canada where a similar survey was conducted⁷ and it was found that the mean number of hours of undergraduate teaching devoted to palliative care was 10 hours.

It might be argued that medical school curricula appear to be slow to change. Although there is no doubt that teaching in palliative care has increased over the last three decades, the emphasis that medical schools give to this important subject is minimal.⁸ In the UK this is despite the London General Medical Council (GMC) publication relating to medical education, Tomorrow's Doctors, where it is stated that medical schools should enable future doctors to achieve an understanding of the special needs of terminal care.⁹ This lack of emphasis is supported by a study of prospectuses and web sites of medical schools in the UK, Ireland, Australia and New Zealand in the year 2000.¹⁰ Of the 29 undergraduate prospectuses and websites of the UK and Ireland no mention of palliative care teaching was made in 17% of the prospectuses and 48% of the web sites. Similarly in the 14 medical schools of Australia and New Zealand, no mention was made in 30% of the prospectuses and 64% of the websites. This is surprising given the worldwide increase of hospices and university departments of palliative medicine.

Postgraduate training in palliative care

Charlton and Smith surveyed 1637 newly qualified doctors in 1997/8 on their perceived skills in palliative medicine on graduation. A Likert scale (from 0 to 5) was used to rate their perceived ability and skills in four clinical scenarios and their anxiety in caring for the dying. Mean confidence rating in breaking bad news was 2.9, ability to empathise was 3.2, discussing prognosis was 3.3 and providing symptom control was 2.8. Mean anxiety rating in caring for a dying patient was 2.9. Many of the respondents felt that their medical training had not prepared them adequately, particularly in the practical aspects for caring for dying patients, but acknowledged that it is a difficult subject to teach.¹¹ This is not just an issue in the UK. A recent study by Clark of 57 internal medicine house staff in Maryland, USA, found a dearth in knowledge and preparedness for delivering palliative care. They reported 1-5 hours of formal palliative care teaching on average, with an associated 1-5 hours of pain management education. In addition, a third of them felt themselves "not at all" or "only slightly" at ease in caring for a dying patient.¹² The situation in the developing world is not much better. A survey by Mohanti of 49 nine medical residents in India found over half considered their training in palliative care to be inadequate, and when questioned only 15% of the non-oncology residents knew how to use the WHO analgesic ladder for cancer pain relief.¹³

GPs are doctors who have completed their postgraduate training. Grande et al surveyed 150 GPs within the Cambridgeshire Health Authority, UK, about their perceived abilities in symptom control. The findings reported in 1997 stated that most felt comfortable in pain control, but nearly half of the GPs found difficulty in treating loss of appetite, lack of bowel control and other symptoms.¹⁴ In Canada, where continuing medical education is required to maintain accreditation, family physicians (the equivalent to GPs) feel inadequately trained in pain and symptom management aspects of palliative care.¹⁵ This finding was supported in 1997, by Hall et al when evaluating a palliative care educational programme, who found a dearth of knowledge among Ontario family physicians' knowledge in caring for the terminally ill in the community.¹⁶ A further study in Canada was by Barnab who surveyed 78 Manitoba GPs in rural Canada finding 41% had never received any palliative care teaching. Of those that had previously had such teaching, 23% had received it didactically, 15.4% had been to a palliative care conference, 14.1% had attended a seminar and 9% had received training as part of their junior post-qualification training. While feeling comfortable in pain and symptom control, these Manitoba physicians identified a need for education in bereavement and psychosocial issues concerning children and death.¹⁷

An attempt was then made to replicate these postgraduate findings for GP registrars in the West Midlands who are in their "trainee" year as a GP after a minimum of three years postgraduate training as a junior hospital doctor. Assuming that their undergraduate training was inadequate as demonstrated by the literature cited previously, the author was keen to ascertain in his work locality the perceptions of knowledge and skills in palliative care of these registrars. This was through a pre-course survey of these doctors who were likely to be qualified from several different medical schools including medical schools overseas. All these doctors were offered the opportunity of attending a palliative care course which is now described. The results of the pre-course survey are then provided to illustrate the educational need for the course.

Aim and objectives of the course

Attendance

The programme is comprised of three study days. The mean number of attendees for study days one and two is 90 registrars and therefore 180 registrars over the two days. There is therefore a mean attendance of 72% of the 250 potential registrars. Registrars are encouraged to attend all three days, but the course is not compulsory. The course is funded by the Postgraduate Medical Education Deanery and there is no charge to registrars for attendance. The benefits of the course are heavily promoted which include a leaflet and brief talk on their regional introductory day, together with publicity on the Deanery and University websites. Registrars are also made aware of the course by individual postal invitations. The funding meets the costs of the venue which is a local hospital postgraduate medical education centre and payment for the multidisciplinary teaching team. The third study day at a local hospice is also voluntary and numbers attending this day are few as registrars find it difficult to gain a further day of study leave from their 12 months GP training towards palliative care. Some hospices charge the Postgraduate Medical Education Deanery for registrars who attend the day.

The pre-course practical exercise

There is important pre-coursework which constitutes the "Practical exercise" and this is where a palliative care patient is followed up in the community under the supervision of the registrar's GP trainer. A patient is identified by the trainer and is seen on a regular basis by the registrar, which may be daily depending on the nature and the stage at which the patient is on in their cancer or non-cancer journey. For readers of this paper the author appreciates the situation is different in Hong Kong in relation to palliative care in the patient's home, but there is no reason why this exercise cannot be conducted in a clinic or hospital setting to meet the same educational objectives.

This form of self-directed learning provides the registrar with experience that they can share with other registrars during protected learning time. This learning experience is not an assessment, but is an opportunity to maintain an educational diary or portfolio and one which registrars may refer to at a later date. Anecdotally, talking to the registrars during small group work it is evident that both the patient, their relatives and the registrar benefit from this exercise and it increases the registrar's confidence in palliative care situations.

The "hidden curriculum" in palliative care

Registrars have already had at least three years experience working as a junior doctor and therefore without realising it, experience in palliative care which has not been formalised. This is part of a "hidden curriculum" which we are keen that registrars reflect on and its underlying philosophy of continuing care and good clinical practice which is a part of all medical specialties. Doyle, a hospice specialist in Edinburgh, Scotland, wrote,¹⁸ "Unlike other specialties palliative medicine is not concerned with the facts and skills needed by a few practitioners, but those needed by every doctor, where the generalist or specialist, reminding us that palliative care is the right of every patient and its provision the responsibility of every doctor". The practical exercise therefore has a very wide remit as it enables doctors to recognise, reflect and consolidate knowledge and skills that they may already partially have, which are essential in all areas of medicine including general practice. This exercise therefore provides them with an opportunity to increase their confidence and also gain greater awareness of their learning needs in palliative care prior to the three study days.

Content of the study days

Of the three study days, two are held in a local hospital postgraduate medical education centre and the third day is held at a hospice local to the registrar's GP practice. The following are the topics covered during the first two study days:

Study day 3: this day is spent at a local hospice and experiential and focuses on the interface between primary care and specialist palliative medicine services.

The multidisciplinary teaching team

The course is multidisciplinary and comprises teachers including an expert patient, GPs with a specialist interest in palliative care, palliative medicine specialists, nurse practitioners in palliative care, a Macmillan specialist palliative care nurse, a research pharmacist and simulated patients. The teaching team meet twice a year to study the evaluation from the feedback forms completed by the registrars and this is an opportunity to further refine the content of the course and the teaching methods employed. It is also a time to develop the teaching faculty and future direction of the programme. In addition to the teaching methods of self-directed learning employed with the practical exercise, didactic sessions are used but these are kept to a minimum. Problem based learning is encouraged through the use of small group work and there is communication skills training using role-play exercises, simulated patients and video work.

Course handbook

There is an extensive course handbook of 57 pages and each registrar is given a hard copy. This is also available on-line.¹⁹ The handbook is intended to be a source of reference and is updated on an annual basis. The handbook provides an introduction to palliative care and the philosophy of palliative care in the 21st century. The handbook also contains details of the teaching programme, timetable and the practical exercise in addition to the aim and objectives of the course. In relation to the third study day at a local hospice, the registrars are given a list of participating hospices throughout the West Midlands and points of contact. Some registrars have asked how they may gain further experience and teaching in palliative care, and details are provided in the handbook regarding a postgraduate award (PGA) and a masters degree at the University of Warwick run in palliative care. Details are supplied for any registrars who may be considering a career in palliative medicine and points of contact to discuss this further. A difficult issue of how to write a prescription for a controlled drug such as an opiate is provided and the requirements under English law. Other drug information is provided and areas where further information may be obtained including a West Midlands palliative care formulary.²⁰ Finally, there is a reading list and important reference articles and papers in palliative care are provided. Where possible these have been hyperlinked so that if the handbook is used online, papers may be seen with ease. This includes the ABC series in palliative care which was published in the British Medical Journal. Reference is also given to the course textbook²¹ and other useful books and specialist journals in palliative care.

Pre-course survey

A pre-course survey in 2003 was given to the 250 registrars who were eligible to attend the palliative care training programme described in the West Midlands and to ascertain the need for the course. (The West Midlands is roughly the "centre" of England and is an area with several major cities including England's second largest city, Birmingham. It is mainly an urban population extending to over 5 million people and there is considerable industrialisation.) The majority of registrars did not know what the course would constitute and so what to expect. As detailed below most registrars perceive palliative care to be about symptom control. There were 136 responses and so a response rate of 54% which was much greater than anticipated. Generally speaking questionnaire surveys tend to yield extremely poor response rates amongst both the public and healthcare professionals as they have become saturated with this research tool. The following results from the respondents were obtained from the survey:

• 100% felt that a palliative care teaching programme was needed
• 51.5% indicated no previous teaching in palliative care
• 58% had qualified since 1995 and 75% since 1990
• 7% said that they would not be interested in attending the programme

Of the 37 (27.2%) of respondents who reported that they had received palliative care training:

• 21.6% had received palliative care teaching at medical school
• 35.2% had received palliative care teaching through structured postgraduates training
• 43.2% had received their training as a postgraduate in an informal and unstructured way.

Respondents were also asked where they felt their learning needs were in palliative care and it was interesting that only 2% said communication skills. The present course which has been described devotes approximately half of the programme time to communication skills within palliative care and the remaining time to symptom control. At the end of the course many of the registrars acknowledge that symptom control is a knowledge-based topic and is much easier to learn than trying to answer the difficult communication based questions of the dying person who may ask, "What will it be like?" or "Why me?" Similar questions may be encountered with the bereaved relatives who may also display considerable emotion, anger or denial. In answer to the question as to what the registrars perceived their training needs might be, the analysis suggests a degree of uncertainty which is probably related to their lack of experience in palliative care as 43% stated that their needs were "general", 20% in symptom control and 2% in communication. The results demonstrated the need for this course.

Course evaluation guiding the content

The course evaluation is extremely positive and consistently so and this, in conjunction with the evidence provided so far in this paper has been the reason that the course continues and develops. When the course started in 1997 the emphasis of its content was on symptom control. Since then the results of the annual evaluation have guided the course which repeatedly demonstrated the need for improved communication skills in this area which now constitutes almost 50% of the course. Perhaps in a small way this makes up for an area that is largely absent from undergraduate medical curricula, but forms a large part of the experience of junior doctors. Many of the registrars on the course are from overseas and the results suggest that their learning needs are very similar according to the analysis of the survey and so this is not an issue confined to UK graduates. This programme attempts to provide education within a domain of practice which does not have clearly defined limits, objectives and the nature of which is extremely challenging bearing in mind the earlier definitions of palliative care. In clinical practice there is a shifting paradigm from medicalisation undertaken by "experts" to total care or what might be described as "supportive care". By necessity this will involve other members of the healthcare team to meet nursing, emotional, social, psychological and spiritual needs as well as the physical in incurable cancer and non-cancer diseases. To further meet these needs and the course aim, there is a course handbook, in addition to the practical exercise which have been described.

The future, course development and research

In summary, it was a great privilege to present this paper in Hong Kong¹ and to provide this written account in this Journal. Following my visit to Hong Kong and listening to other papers being presented at the conference I was made aware of the considerable amount of work in relation to medical education in palliative care that remains to be undertaken in the UK and perhaps also in Hong Kong. Although it is unusual for patients to die in their own homes in Hong Kong only a third of patients in the UK die in their own homes and the majority die in hospital despite research demonstrating that if given the choice two thirds of patients would prefer to die in their own homes.²² General practitioners as generalists need further confidence and resources in addition to both knowledge and skills to facilitate this to happen in patients' homes and for appropriate review of death certification paperwork to potentially enable this to happen in Hong Kong. Professor Deeken from Japan at the conference emphasised the importance of death education to the general public, not as a morbid reminder of their mortality, but an indicator of the preciousness of life and maintenance of quality of life²³ and so reiterating the words of Dame Cecily Saunders in relation to dying patients and our role to enable patients to "live until they die".²⁴ Finally, as teachers in palliative care it is our aspiration that this course can be extended to all junior doctors and not just those training in general practice. Palliative care cannot be adequately taught in three days, but this programme is a start and an opportunity for junior doctors to both recognise and formalise its importance in postgraduate training and have a source of reference and further reading. Furthermore, following the course and reflection on it may make doctors more aware of their learning needs in this field and so increase their sensitivity to dying patients.

Acknowledgements

The GP Unit of the Postgraduate Medical Education Deanery of the West Midlands, UK, for funding this course and Andrew Currie, medical undergraduate, Warwick Medical School, UK, for assistance with data input and analysis. Colleagues of the Hong Kong College of Family Physicians for their invitation to present this paper at the 11th Hong Kong International Cancer Congress, The Faculty of Medicine Building, The University of Hong Kong and their hospitality.

Key messages

1. Palliative care includes patients with life-threatening non-cancer disease as well as cancer, and continues with bereavement care after a patient has died.
2. A literature review provides evidence that training in palliative care is inadequate worldwide.
3. The majority of postgraduates presently receive palliative care training opportunistically and in an unstructured informal way as part of a "hidden curriculum".
4. It is possible to run 3-day courses for post-graduates to improve confidence, knowledge and skills in palliative care.