improving end-of-life care in the care home sector

Pract. Dev. Health Care 7(4) 189–197, 2008Copyright © 2008 John Wiley & Sons, Ltd DOI: 10.1002/pdh

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Innovation in practice

Improving end-of-life care in the care home sector

Gillian Knight—Macmillan Care Pathway Coordinator for Care Homes, South-East Wales Cancer Network, Cardiff, UK

Carol Jordan—Clinical Change Facilitator, Velindre Cancer Centre, Cardiff UK.

Melanie Lewis—Palliative Care Nurse Adviser, South-East Wales Cancer Net-work, Cardiff, UK

ABSTRACT

A project was instigated in October 2005 to improve the end-of-life care of care home (nurs-ing) residents across South-East Wales through coordinating the implementation of the All-Wales Integrated Care Pathway for the last days of life. One of the key areas of responsibility for the project coordinator was to evaluate the current level of palliative care knowledge and skills held by care home staff participating in the project. There are currently 112 care homes (nursing) in South-East Wales and the project has provided some level of education on end-of-life care to nursing staff from 58 (52%) of those care homes. Copyright © 2008 John Wiley & Sons, Ltd.

Introduction

The South-East Wales Cancer Network, with the support of Macmillan Cancer Support, instigated a project to coordinate the implementation of the All-Wales Inte-grated Care Pathway (ICP) for the last days of life into care homes (nursing) across the Network area (the project started on 24 October 2005 and ended on 24 October 2008).

Practice Development in Health CarePract. Dev. Health Care 7(4) 189–197, 2008Published online 23 October 2008 in Wiley InterScience(www.interscience.wiley.com) DOI: 10.1002/pdh.268

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It is widely accepted that palliative care should be part of the care extended to patients who have a chronic progressive disease and for whom a cure is not possible (National Council for Hospice and Specialist Palliative Care Services, 2004), regardless of the care setting (National Institute for Clinical Excellence, 2004).

The National Council for Hospice and Specialist Palliative Care Services (2006) states that fi ve deaths in every six involve people aged 65 years or over, and one in every fi ve of all deaths take place in a care home. This establishes the need for ensuring that care home staff are educated and equipped to care for residents at the end of life. There have been projects in England and North Wales addressing the pal-liative care education needs of care home staff but none previously in South-East Wales.

The project coordinator was recruited to the Cancer Network on a three-year secondment from Velindre Cancer Centre in Cardiff, where she had worked for 10 years as a senior nurse/ward manager, having had extensive experience in both implementing and using the All-Wales ICP for the last days of life.

Background and methods

This article gives an overview of the education needs analysis carried out at the begin-ning of the project, whilst also exploring some of the methods through which the edu-cational needs identifi ed were addressed. It also aims to dispel the myth that care home staff in South-East Wales are a transient workforce and not motivated regarding their education and development.

The education needs analysis was undertaken prior to the implementation of any formal training in the use of the ICP for care in the last days of life in order to gain an insight into the education needs of care home staff. A questionnaire was devised which was intended to review the baseline knowledge of palliative care issues of qualifi ed and unqualifi ed care home staff.

The project coordinator found no available local or national Welsh data on the skills or staff retention numbers for the care home sector, which was another motivation for carrying out the education needs analysis. In England, these data are available through ‘Skills for Health’, which works in consultation with carers, employers and service users, with the aim to modernize adult social care in England by ensuring that qualifi cations and standards are continually adapted to meet the changing needs of people who use care services.

This is done through:

• Developing national standards and a qualifi cation framework for the care home sector

• Collecting skills data and researching issues affecting carers and people who use care services

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• Creating a national workforce development strategy for all sectors

• Building employer-led regional support networks to liaise with health services, local government and education services at a local, regional and national level.

These data help to determine the skills base needed by the workforce now and into the future. It was suggested by members of Care Forum Wales that the work should be extended into Wales. The education needs analysis therefore also asked what formal education and training nursing staff had received or were receiving (if any), as well as what they believed to be their future priorities for education regarding the palliative care of dying patients. The project coordinator was particularly interested in the experience of the nursing staff working within the care home sector.

Results

Response rate

In all, 870 questionnaires were sent to 29 care homes in 10 Local Health Boards (LHBs) over a six-month period between March and August 2006. A total of 376 were returned (43% response rate) within the time frame (others were received some months following the deadline and have not been included in the fi nal analysis). Fifty-six were excluded owing to being returned incomplete; therefore, the total valid number returned was 320 (37%). Fifteen out of 29 care homes returned questionnaires.

Demographic data

The age of the respondents ranged from 16–65, with over 50% aged between 31 and 50. Hours worked varied from four per week up to 60 per week. Many staff worked over their contracted hours on a ‘needs’ basis (i.e. bank or overtime shifts). Thirty-six per cent of staff were qualifi ed nurses, 64% were unqualifi ed. Visits to the care homes by the project coordinator revealed that no homes used agency nursing staff on a regular basis at that time.

The length of time worked at the care home varied, with the majority of staff (51%) having worked within the care home sector for more than fi ve years. This rein-forced to the coordinator the volume of experience within the care home sector in South-East Wales and the fact that when staff change jobs they tend to remain within the care home sector.

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Length of Time in Current Care Home

0-6 months8%

7-18 months23%

19-36 months21%

3-5 years13%

5 + years35%

Length of Time in Care Homes Overall

0-6 months, 3%

7-18 months, 15%

19-36 months, 18%

3-5 years, 13%

5 + years, 51%

Figure 1.

Current education

Overall, 40% of respondents were undertaking some form of education or training at the time of the review (23/116 [20%] qualifi ed, 106/204 [52%] unqualifi ed). This fi ts in well with the Government target outlined in the National Minimum Standards for Care Homes (2002), which states that at least 50% of care staff achieve a level 2 National Vocational Qualifi cation in care.

Other education being undertaken included:

• Management courses

• Post-Graduate Certifi cate in Education



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• MSc Psychology

• Learning disabilities courses

• Counselling certifi cates

• Information Technology/European Computer Driving License

• Diploma in Nursing

• Conversion course from 2nd level to 1st level nursing registration

• Degree courses

• Access to Nursing course

• Others.

Responses to question relating to palliative care understanding

The questionnaire asked staff to rate their familiarity with different aspects of palliative care and symptom control using a Likert scale. A four-point scale was used; this was a forced choice method, since the middle option of ‘neither agree nor disagree’ was not available. The questionnaire used scores from 1 to 4, with 1 being equivalent to ‘not familiar’, 2, ‘fairly familiar’, 3 ‘familiar’ and 4 ‘very familiar.’

The palliative care issues focused on:

• Pain assessment and management

• Assessment and management of other symptoms– dyspnoea– nausea and vomiting– constipation– respiratory tract secretions– agitation and confusion

• Communication with patients and residents who are dying

• Communication with the families of patients and residents who are dying

• Use of syringe drivers

• Death and dying

• Bereavement

• Breaking bad news.

These issues were chosen to refl ect the foundations in palliative care as outlined in the literature and in the Macmillan ‘Foundations in Palliative Care’ (2004) facilitated learning programme designed specifi cally for care homes (one pack of which is free of charge to all care homes).

General palliative care is an approach which improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identifi cation and

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impeccable assessment and treatment of pain and other problems – physical, psychologi-cal and spiritual.

Overall, responses showed that 21% of staff felt they were ‘unfamiliar’ with palliative care issues and 26% stated that they felt ‘very familiar’. The remaining 53% felt ‘familiar’ or ‘fairly familiar’. Signifi cant fi ndings from the review included the fact that almost half of the staff surveyed felt that they were not familiar with the use of syringe drivers, but only 7% of the total stated that they would see this as a priority for education.

A baseline audit of deceased patient records was carried out in August 2006 in the same 29 care homes that were included in the education needs analysis, and the fi ndings highlighted that symptom control of dying residents in care homes across South-East Wales was poor (Knight and Jordan, 2007).

Priorities were seen as:

• Communication and breaking bad news (37.5%)

• Pain assessment and management (19%)

• ‘Other symptoms’ (15%).

Some staff prioritised other issues, which were not mentioned in the questionnaire:

• How to recognize the dying phase

• Awareness of support available (e.g. specialist nurses)

• Practical training on last offi ces.

From visits undertaken and the responses from the questionnaires, it was apparent that the analysis of staff perceptions of training needs did not correlate with the researchers’ fi ndings from the audit of deceased patient records – for example, the fact that. only 7% of staff identifi ed syringe driver training as a priority.

A continuous subcutaneous infusion using a syringe driver can be an effective method of drug administration that is particularly suited to controlling symptoms at the end of life, when other routes are inappropriate. The coordinator found from the audit of deceased resident records that approximately 60% of residents had had a symp-tom documented, of whom most had not had the appropriate medications to alleviate the symptom prescribed (Knight and Jordan, 2007). The coordinator concluded that there therefore was a clear need for education on the use of syringe drivers to be addressed with the care home nurses.

The coordinator also concluded that there may be some areas of ‘unconscious incompetence’ (Campinha-Bacote, 1998) (Figure 1). Through working with the care home nurses, the author found that they were isolated from many of the practice de-velopments occurring within primary care and that there clearly was a divide between the hospital and the care home setting. This gap can be narrowed through ongoing collaboration between all care sectors with the patient/resident’s best interests at the centre of all practices.



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In psychology, the four stages of competence relate to the psychological states involved in the process of progressing from incompetence to competence in a skill:

1. Unconscious incompetence The individual neither understands or knows how to do something, nor recognizes

the defi cit or has a desire to address it.2. Conscious incompetence Although the individual does not understand or know how to do something, he or

she does recognize the defi cit, without yet addressing it.3. Conscious competence The individual understands or knows how to do something. However, demonstrating

the skill or knowledge requires a great deal of consciousness or concentration.4. Unconscious competence The individual has had so much practice with a skill that it becomes ‘second nature’

and can be performed easily (often without concentrating too deeply). He or she can also teach it to others.

Figure 2. The four stages of competence.

From the numbers of staff undertaking some form of education or training programme, it is clear that there is a willingness to learn. In addition, the response rate from staff shows that there is a defi nite interest in improving the care given to patients/residents who are dying. The recommendations following the educational needs analysis included a need for formal and informal palliative care education programmes, incorporating the ICP with delivery at local level. Education was instigated, with the collaboration of the care home matrons, LHBs and the palliative care clinical nurse specialists, including:

• A standardized ICP education pack was developed (through forming an educa-tion subgroup)

• Formal and informal teaching sessions and afternoons were carried out, focus-ing on the ICP in the individual care homes

• ‘Train the Trainer’ syringe driver training was set up, funded and implemented over a two-year period

• Matron forums were set up, coordinated and established

• Informal training and support sessions, including post-death debriefi ng sessions, were delivered

• Study days, covering various issues around improving end-of-life care (as priori-tized in the education needs analysis) were run, free of charge, for the care home nursing staff.

The project coordinator, through working within the Cancer Network, in partnership with Macmillan Cancer Support, facilitated and funded the study days. The days were

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delivered in collaboration with the local specialist palliative care teams from across South-East Wales. The aim of all the education provided throughout the project was to empower care home nurses to improve end-of-life care within the care home sector. This empowerment was particularly evident with the ‘Train the Trainer’ syringe driver training; key people were trained and equipped with the knowledge and skills to train and assess their own care home nurses in the setting up and use of the Graseby syringe driver within the care home setting. This course was also accredited by the Royal Col-lege of Nursing, with six study hours awarded. Three of these courses were run, with 45 places, over a 12-month period, and since the course many residents’ symptoms at the end of life have been successfully managed by the care home staff using Graseby syringe drivers. A number of the homes have also purchased their own syringe drivers since attending the training.

Attendance at the educational sessions/study days/matrons’ forums/courses was noticeably better when the coordinator put a fi nancial clause on attendance (once places were confi rmed on a course, non-attendance would incur a cost ranging from £20–£100, depending on the cost of putting on the course).

The coordinator set up a learning contract with the link senior nurse in indi-vidual care homes (usually the matron) which outlined expectations around times, numbers of nurses, participation, venue and various other ground rules prior to providing education. The coordinator felt a real commitment from the care homes, and participation from the nurses at the various educational sessions was excellent, with evaluations reiterating the benefi ts achieved through exploring issues around end-of-life care, with a focus on individual experiences within the care homes.

In September 2007, the project coordinator repeated the audit of deceased pa-tient records to ascertain whether the education had altered how end-of-life care was delivered in the same 29 care homes. The re audit demonstrated an improvement in the recording of end-of-life care. The All-Wales ICP use had increased from 3% to 31% in one year (Knight & Jordan 2007).

The project is now coming to an end, but addressing the end-of-life educational needs of the care home nurses is ongoing. The project has undoubtedly instigated and coordinated a range of approaches through which end-of-life care for care home resi-dents can be improved. The ongoing palliative care educational needs of the care home nurses will be addressed through continued collaboration between the care home staff and the specialist palliative care teams and through bridging any communication gaps between all care sectors to ensure that nurses in the care home sector are aware and included in education and training as appropriate.

The ongoing monitoring and performance management of the use of the All-Wales ICP within the care home sector could be achieved through the Welsh Collab-orative Care Pathway Project (WCCPP) on an all-Wales basis, supporting an annual audit of the ICP and recording usage of the ICP in the different care settings. The WCCPP will maintain and circulate an annual update of the ICP. The individual care homes can either register directly with the WCCPP or participate through their pallia-tive care clinical nurse specialist teams.



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Conclusion

Identifying and starting to address the palliative care educational needs of the care home nurses in South-East Wales has been reassuring. It has been a privilege working with such an enthusiastic and dedicated group of nurses and it is evident that they are eager to improve the care experience for their residents and their residents’ signifi cant others.

The requests for places on study days and the coordinators’ experiences from working with the care homes for nearly three years clearly demonstrate the enthusiasm and willingness to improve the end-of-life care for residents in care homes across south-east Wales. Care home nurses acknowledge that end-of-life care is a huge part of their everyday working. This supports the authors’ belief that care homes are the hos-pices of the future in the traditional sense and that the need for ongoing palliative care education within the care home sector must be addressed locally.

Acknowledgements

The authors would like to thank the community specialist palliative care teams from across the south-east Wales Cancer Network area, in both the statutory (Abertawe Bro Morgannwg University NHS Trust, Cardiff and Vale NHS Trust, Cwm Taf NHS Trust, Gwent Healthcare NHS Trust and Velindre NHS Trust) and voluntary sectors (George Thomas Hospice Care, Hospice of the Valleys, Macmillan Cancer Support, Marie Curie Cancer Care and St David’s Foundation Hospice Care), and the project steering group for their support and input into the project, without which the project would not have been possible and through whom the ongoing support and palliative care educational needs of the care home nurses are being addressed.

ReferencesCampinha-Bacote J (2002). The process of cultural competence in the delivery of healthcare services: A

model of care. The Journal of Transcultural Nursing 13(3): 181–4.Macmillan Cancer Support (with the support of the NHS and Open University) (2004). Foundations in

Palliative Care: A Programme of Facilitated Learning for Care Home Staff. Professional resource available from; www.professionalresources.org.uk/macmillan

National Council for Hospice and Specialist Palliative Care Services (2004). Palliative care in care homes for older people. Dr Katherine Froggatt (2004).

National Council for Hospice and Specialist Palliative Care Services (2006). Ethnicity, older people and Palliative care. A joint publication from the policy research institute on aging and ethnicity and the National Council for Palliative care.

National Institute for Clinical Excellence (2004). Guidance on Cancer services. Improving Supportive and Palliative Care for People with Cancer. London: National Institute for Clinical Excellence.

Knight G, Jordan C (2007). All-Wales Integrated Care Pathway project for care homes: Completing the audit cycle. Journal of Integrated Care Pathways 11: 112–9.

Address correspondence to Gillian Knight, Macmillan Care Pathway Coordinator for Care Homes, South-East Wales Cancer Network, Third Floor, 14 Cathedral Road, Cardiff, CE11 9LJ, UK. Tel: +44 (0)2920 196166. E-mail: [email protected]

improving end-of-life care in the care home sector

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