This is Medicine Journal -
The terminal phase
Abstract
Care in the terminal phase is an important part of medical practice. Ensuring a dignified death for patients with appropriate support for carers is a core activity of all healthcare professionals. Once a patient has entered the dying phase it is important that pain and symptom control is managed appropriately. All medication that needs to be continued should be converted to the subcutaneous route. As required medication should be prescribed for the key symptoms that occur in dying patients, i.e. pain, agitation, respiratory tract secretions, dyspnoea, and nausea and vomiting. Futile treatments should also be discontinued at this time and consideration should be given to the discontinuation of antibiotics and blood tests. Normally a decision for a ‘Do Not Resuscitate’ order is made at this time. Appropriate communication both with the patient and their family is key, both to ensure that the psychological and spiritual needs of the patient are met and that the family is aware that the patient is dying. Decision-making and practice for care of the dying can be supported by use of the Liverpool Care Pathway for the Dying Patient.
This paper is co-authored by Dr. Alison Coackley.
This is Mail Online -
This story concerns an elderly gentleman, just one more statistic in this awful toll of statistics that is the LKP (Licence to Kill People).
This gentleman has a name. He is Mr. Jack Jones.
You may read more here -
Dr. Alison Coackley, the palliative
medicine consultant who played a key role in drawing up the Liverpool Care
Pathway, was the consulting physician who informed the Jones family that their
father's cancer had returned.
And this hospice where Mr. Jones' life was taken also played a key role in the development of Ellershaw's LCP!
The hospice and the doctors who
treated Mr Jones continue to deny liability, but Mrs Jones accepted an £18,000
out-of-court settlement after being told she would otherwise lose her legal aid.
That's what a human life is worth to Dr. Coackley. Eighteen grand. There you have it. And they have teams of lawyers fighting their corner in the NHS LA! All paid for out of public money. Heads they win, tails we lose.
Disgusting people!
Mr. Jones' daughter left a comment on thylacosmilus.blogspot.
This is as follows –That's what a human life is worth to Dr. Coackley. Eighteen grand. There you have it. And they have teams of lawyers fighting their corner in the NHS LA! All paid for out of public money. Heads they win, tails we lose.
Disgusting people!
sandra said...
If I may interject hereThe Mr Jones concerned was my father.
It was indeed a case of misdiagnosis that lead to him being put on the pathway and consequently euthanazed.
But the salient point is, we knew it was a chest infection and begged the doctors concerned to put him on a drip and antibiotics.
They refused, because, 'nothing can help him now'.
we asked every day for a week, untill he died.
The doctor who refused us and made the mis diagnosis was Dr alison coackley.
She helped devise the liverpool pathway Her paper, The terminal phase.written with john ellershaw is the seminal work on entering the pathway
a small quote.......
Barriers to diagnosing ‘dying’
• Hope that the patient gets better
• No definitive diagnosis
• Pursuit of unrealistic/futile interventions
• Disagreement about the patient’s condition between members of the multi-professional team
• Failure to recognize key symptoms and signs
• Lack of knowledge about prescribing
• Poor ability to communicate with family/patient
• C oncern about withdrawing/withholding treatment
• Fears about shortening life
• C oncerns about resuscitation
• C ultural and spiritual barriers
• M edico-legal issues
she rail roaded my father onto her precious pathway. Ignoring all her own recommendations and the loud protestations of myself and my mother.
My concern is, If Alison Coackley isn't capable of diagnosing an obvious chest infection. Is she really capable of designing and implementing a nationwide program for diagnosing dying ?
Dr. Ellershaw co-authored the book 'Care of the Dying'.
The pre-version 12 first edition was published in 2003. Ellershaw was promoting his gold standard of Gold Standards version 11
This was trialled in the NHS until post 2009.
Hence, the National Care of the Dying audit was based on a clinical trial.
As we now know, staff were either not trained or not trained adequately in the operational protocols of the Pathway.
This is a Death Pathway - a Stairway to Heaven! - and it was trialled by insufficiently trained staff. Can that be legal?
(Hey! "Stairway to Heaven"! Are they offering prizes for suggestions? Mr. Lamb...? Can I be the first to propose this for the re-branding...? Not quite so final as "End of Days".)
The withdrawn LCP Version 11 did not say that consent had to be obtained. That may explain why they never obtained it from May! They're probably still operating Version 11 without even knowing it...
Under Version 11, the patient wasn't asked if they could speak English until everything had been switched off and the syringe drivers had been set up.
The LCP is a course of treatment - and non-treatment. Of course it is.
They insist the LCP is a protocol and not a treatment, however.
They have to, otherwise it would breach the
The first edition chapter 8 (now rewritten) is available at Oxford Scholarship Online -
Implementing the Liverpool Care Pathway for the Dying Patient (LCP) in hospital, hospice, community, and nursing home
Most patients die in an acute hospital setting. The Office of Population Census and Surveys 2000 (1) revealed that of all deaths 67% occur in hospital, 29% in the community, and 4% in a hospice. Since these statistics are unlikely to radically alter in the near future, it is essential to focus on ways in which care of the dying in the acute sector can be improved. The development of Hospital Specialist Palliative Care Teams (HSPCT) and improved medical and nursing undergraduate training have recently improved the care of the dying (2). However, despite the rapid growth and integration of HSPCTs over the last decade, it is unrealistic to expect them to care for all dying patients within their organization. For example, The Royal Liverpool University Hospitals Trust has approximately 2000 deaths per year. The HSPCT is currently involved in the care of 15% of patients dying in the Trust. It is therefore the HSPCTs responsibility to provide education and evidence/research-based guidelines of best practice for the generic multidisciplinary team, to empower them to care for the 85% of dying patients whom the HSPCT are not directly involved with.
A confidential questionnaire was distributed to all auxiliary, qualified nursing and medical staff to ascertain their knowledge base and give them an opportunity to express how effective they felt they were in caring for dying patients and what they felt could be improved. There was a 70% response rate. The results highlighted the need for education concerning symptom control in the dying patient. However, some ward staff felt what they needed most of all was access to more Macmillan nurses rather than access to relevant education and guidelines of best practice.
Specific information to support the patient's family/other was also identified and developed, comprising:
Initially, two key nurses from each ward area were invited to attend a study day, followed by regular meetings. The key nursesʼ responsibility was to disseminate their knowledge to their colleagues. This strategy was unsuccessful because the information did not filter through to the ward area and the care pathways were only being used when the key nurses were on duty.
As a result a new strategy was implemented. It seemed that it would be more effective to allow all nurses access to a short ward-based teaching session. The reformed education programme included the nomination of two key nurses from each ward to assist with LCP implementation, repeated compulsory 30 minute planned teaching sessions for all nursing staff within a four to six week period. Training sessions were included within the induction programmes of newly appointed and overseas nurses.
The education of junior medical staff was challenging due to inherent difficulties and time constraints. It was decided to give them an opportunity to learn about the LCP in a variety of ways. For example, one-to-one ward-based teaching and teaching during their pre- and post-registration tutorials. Senior medical staff gained information during presentations at multidisciplinary and clinical governance meetings and Grand Round presentations.
It is important to note that a commitment to ongoing education is crucial after the LCP has been implemented to sustain the project. We also identified other related educational requirements as a consequence of our increased profile in the ward areas.
Permission was sought from the relevant managers and consultants to launch the LCP with a view to obtaining blanket approval and consensus. There was a strong element of interest and support with few objections raised.
Once the pilot study began, regular meetings were held with the multidisciplinary working party and ward staff. As a result the LCP was refined into its present format.
The milestones include working with the nominated key nurses, making daily ward visits to answer queries, and develop ward staff's knowledge and confidence. Feedback of variance analysis and audit to key nurse/ward team is also a key part of the education package. It is useful to monitor the number of deaths occurring on the ward, to enable staff to see how many patients had been put on the LCP, and if a patient had not been put on the pathway to establish why not.
After six months implementation, data analysis should be presented back to the ward team so that the information cycle is complete and staff begin to develop a sense of ownership of the LCP project. It is beneficial to provide staff with a forum in which they can discuss specific anecdotal data and evaluate experience. To undertake a post-implementation review may also be helpful at this stage, to compare results with the initial base review.
Over this period of time it is likely that the wards will develop autonomy using the LCP. Less input is required from the HSPCT. However, it is imperative to formalize a plan with the key nurse/multidisciplinary team to sustain the project.
The team co-ordinating the project may then focus on another area in which to implement the LCP. It is our experience that it would not be possible to launch the LCP across the all wards of the hospital at the same time, as it is likely that there would not be the manpower available to support implementation sufficiently.
Analysis based on data collected from the pilot ward demonstrated favourable outcomes which, when compared to those achieved in the hospice setting were similar. Significant improvements were evident when the outcomes were compared to the initial base review. This data suggests that the LCP had improved the care of the dying patient in the hospital setting.
The benefits to the ward teams are that the LCP appears to encourage successful teamwork, communication, and care planning. There is less time spent on paperwork, (p. 126 ) freeing more time to deliver patient care. The LCP provides a framework that enables staff to deal with situations they may have found difficult previously, developing a sense of empowerment, safe in the knowledge that they are delivering high quality evidence-based care. This is enormously valuable not only when caring for a particular patient but in strengthening a sense of purpose, morale, and satisfaction in staff.
Feedback of data informs staff of good practice. This is very important in the acute health care setting when staff often feel undervalued. The number of complaints related to death and dying within the hospital has fallen since implementation of the LCP.
In addition to being a powerful education tool, the LCP has contributed to the development of the palliative care Network Nurse Programme (NNP), which aims to promote an improved and integrated service. It promotes a forum for continual, shared learning to improve care for patients who need a palliative care approach (6).
The impact upon the HSPCT is demonstrated by the reduction in the number of referrals to the team. The referrals are now more complex in nature and utilize more appropriately the expertise of the specialist team. In addition, data analysis identifies research and development questions that will have a direct impact upon patient care, together with demonstrable outcomes of care.
Initially, a series of open meetings were held for all staff to plan the time-scale for implementation of the LCP in the hospice. At a later stage structured meetings were held. Information packs and one-to-one group teaching sessions were made available to all staff.
A considerable amount of time was invested in establishing clear channels of communication. The importance of establishing this structure and the energy required to ensure the success of the project cannot be underestimated. The link nurse role remains of crucial importance in the Centre today. It has expanded to encompass the implementation of other pathways, for example, a Discharge pathway. It also now involves presenting at meetings and conferences and supporting pathway implementation across other Marie Curie centres.
Previously, it was an arduous task for the team caring for a patient to trawl through the records to ensure that they read all sections of the notes, i.e. nursing, allied health professions, social work, doctors, etc. There was a danger that if all the notes were not read, then an important element might be missed. The staff were encouraged to become involved in the design and structure of the documentation and became aware of the value of variance reporting. This led to a greater acceptance of the pathway. Today the hospice team would find it unacceptable not to utilize the LCP. The benefits have far outweighed the initial concerns.
The publication of the National cancer plan (5) and its implications for palliative care have increased the demand for expert consultancy as more and more organizations recognize the value care pathways as a means of measuring outcomes. Cancer Networks have now been established across the country and this national strategic (p. 129 ) approach to palliative care services has already resulted in the establishment of major education programmes on the LCP. For example, a district nurse education programme has been set up by the Merseyside and North Cheshire Cancer Network. The aim of this is to ensure that all staff gain a sound understanding of the purpose and value of the LCP and its role in improving care for dying patients.
In conclusion the LCP is an excellent research-based teaching tool for professionals and students who are not experienced in palliative care. Its structured approach allows for the holistic individual needs of each dying patient and ensures that all aspects of their care are addressed whether the needs of the patient are physical, psychosocial, emotional, or spiritual. It is an excellent tool that fits well into the clinical governance agenda (11, 12). It facilitates and fosters a culture of continual constructive challenge to clinical practice. How can we improve? What is working well? What is not? And what do we do about it? These questions are often asked and yet are not always fully addressed in a structured way. The pathway provides a clear way forward to do this.
The LCP is an excellent tool to benchmark Care of the Dying practices with other hospices and other settings. It encourages collaborative working practices with professionals and a sharing of practice developments that are research based.
In reality however, this is not always be possible. This leads to feelings of frustration and inadequacy on the part of the health care professional, anguish to the patient, and guilt on the part of the carer.
All too often everything appears to be in place to care for a dying patient at home, but because of an escalation of symptoms, lack of knowledge and understanding on the part of the health care professional, or lack of communication between health care professional and carer, patients would be transferred in their final days or even hours of life to a hospice or hospital, leading to feelings of frustration and inadequacy.
The aim of implementing the Liverpool Care Pathway for the Dying Patient (LCP) in the Community was to provide a structure that could be used across the Community Trust to address these problems, as from discussions it became apparent that there was no measurable, equitable service being provided. The LCP provides a framework for care, which can be adapted to the individual patientsʼ and carersʼ needs and wishes. By setting out the intended practice in the form of a document, the opportunity arises to provide measurable care that is clearly outcome based, but with the flexibility for adaptation.
A base review undertaken prior to using the pathway highlighted that interventions were being undertaken which were unnecessary and there were areas of educational deficit that needed to be addressed by a programme of education.
The initial assessment of the patient prior to inclusion on the LCP follows the same criteria used within both the hospice and hospital settings. Because of the different setting, i.e. the patientsʼ home, some of the goals on the other pathways were not applicable necessitating minor adaptation.
It was hoped that by implementing the LCP in the community, problems could be anticipated, and suitable solutions prepared preemptively, and the nursing staff would have a measure of satisfaction at the standard of care being achieved.
The first problem we encountered was to set up a working party to examine the feasibility of initiating such a concept into the community. Only a handful of (p. 131 ) like-minded people felt they could set aside enough time to work on the project. A core team of four people examined the concept in more depth, familiarized themselves with the documentation, and set out an action plan to take forward what would undoubtedly be a huge project.
It was decided that the implementation would take place slowly, to lessen the possibility of failure of the project. Nevertheless there was an unexpected degree of cynicism when discussions first took place. There was a feeling among many of the nursing staff that this would prove to be yet another ‘paper exercise’, with extra work for them with no positive outcomes. It was necessary to have three separate discussion sessions, with all staff concerned, when the original document was redrafted for community use.
Among many of the interesting discussions that took place was one around the title of the document itself. Some staff felt uncomfortable that the word ‘dying’ was included in the script, bringing into question whether the staff themselves had issues with the fact of death, and they found this difficult to cope with, not the title of the document itself.
In spite of the staff in the localities all being briefed on the project, and knowing what we were undertaking there was an air of suspicion. Why did we want the notes? What were we looking for? Were we checking up on the nurses?
We also examined the corresponding notes in the GP surgery but found that in the majority of cases, not only could we not decipher the writing, but also there was very little supporting evidence that we could use for review.
The results of the base review were illuminating. Whilst we knew the nurses had provided a very high standard of care for the dying person, there was little evidence to support the care given in the notes. According to the ethicist John Tingle, ‘in a court of law if the evidence is not written; it is deemed that it has not been done’. Regular systematic review of symptoms appeared to be sporadic. The results are detailed in Figure 8.1.
(p. 132 ) Feeding back the results of the base review required huge amounts of diplomacy to allay the anxiety of the staff at this point. We were clear to reinforce that the evidence from this base review was not unusual, and whilst we were confident that the care had been undertaken, we were seeking written evidence to support the facts.
It had previously been agreed that the documentation used in the hospital setting should be replicated for community use. The only changes made were to parts of the pathway, which clearly were pertinent to acute sector only, e.g. resuscitation status, collection of belongings after death, collection of certificates from general office, etc. These parts were deleted and appropriate interventions pertinent to the community inserted.
It was decided that the document and implementation of the LCP should be piloted in two very different general practice settings. One practice consisted of five GPs, already proactive in palliative care, with a good supportive primary health care team. Patient mix was varied as the practice had two surgeries, one in a socially deprived area with high rates of unemployment, and the other in a new estate with low rates of unemployment and generally inhabited by professionals and affluent families. The other pilot site was a single-handed GP practice in an inner city area. Staffing levels in the PHCT were often poor, due to sickness and unavailability of staff. The patient population was a mix of elderly patients, and a large ethnic minority population.
Staff in the practice were given additional training and education on the project, and extra support was given to the PHCT. Collaborative visits with nurses to dying patients on the LCP were given by the project team, in order to ensure problems were not arising due to misinterpretation. After a few initial hiccoughs this worked well.
Initially it was envisaged the pilot would run for three months in each practice. However, numbers of patients fitting the criteria to be entered on the LCP were slow to recruit, the project was therefore extended for another three months in order to give a more meaningful evaluation. After six months, 16 patients, all dying of cancer, had been placed on the pathway. Mean time on the pathway was three days, with a range of three hours to ten days. The numbers of episodes of pain and agitation were analysed and the results demonstrated:
Problems highlighted were the delay in obtaining vital equipment, and the lack of ability to obtain necessary medications out of hours. This latter point only arose on one occasion and was in fact due to the proactive prescribing of medication not taking place.
Analysis of the data from the pathways was undertaken by the audit department of the Trust, and was presented back to the pilot practice. A comparison with the pre-pathway data from the pilot practices showed that the implementation of the LCP made a measurable difference to the documented care of patients dying at home.
(p. 133 ) Post-implementation audit showed that the level of documented evidence had risen dramatically.
This programme was delivered by the Macmillan Community Clinical Nurse specialist team on an ongoing basis. It was delivered as a two-day course with workshops, case studies, and self-directed study as an integral part of the day.
Additional support was given to nurses when they initially cared for a patient who fitted the criteria for pathway inclusion.
Refresher sessions had to be held for some staff that attended the initial training, but then had no patients who fitted the criteria for some time and had forgotten (p. 134 ) something of the process. Pathway updates were included on the education programme provided by the Macmillan CNS team in order to keep the LCP high profile.
This same process was undertaken for two further cohorts of interested practices. The remaining practices that had not put themselves forward to undertake the project were also contacted. Trying to implement the LCP in these practices was problematic. Eventually the project was implemented across the entire Trust, although with antagonism in some areas.
The results are as shown in Figure 8.2. These show a considerable improvement from the initial base review results shown in Figure 8.1.
Unfortunately in early 1998 she developed symptoms of superior vena cava obstruction. This necessitated the use of high dose corticosteroids followed by further radiotherapy. Sadly her condition relapsed within two months when it was decided that no (p. 135 ) further active treatment was possible and she was kept comfortable at home with active symptom control.
On two occasions she had to be taken to hospital at the weekend as an emergency admission, when perhaps with forward planning this could have been avoided. Referral to the Macmillan Clinical Nurse Specialist took place after the second admission and a joint visit was undertaken with the district nursing care manager to the patient's home. Assessment of the needs of Mrs A and her family took place. Following the guidelines set out in the LCP it was decided that a supply of the most commonly used drugs should be made available in Mrs As home. The GPs written permission to give them was sought, should the nursing staff deem it to be necessary. A supply of diamorphine, hyoscine hydrobromide, and midazolam was obtained, together with a syringe driver for subcutaneous administration of the drugs.
These supplies remained untouched in the patient's home for 15 days. The family and Mrs A all expressed a feeling of reassurance from knowing that they were there, and that Mrs A could hopefully achieve her wish to die at home without another admission to hospital.
On the afternoon of the 16th day Mrs As condition deteriorated. She complained of feeling extremely dyspnoeic, and had developed marked oedema in her face and upper thorax. Following telephone discussion with her GP, the district nurse set up the syringe driver containing a small quantity of diamorphine and hyoscine. The GP visited later and found Mrs A to be settling comfortably, with no obvious distress. She roused slightly during the evening and complained that she was getting some chest pain, but said she could cope with that but was frightened because she realized that she was dying. The night district nursing team were contacted, and called to give a subcutaneous injection of midazalom and diamorphine.
Mrs A spent a comfortable night, and roused again soon after dawn. She was not in pain and was calm. She asked her family to open the curtains so she could see the sun coming up. Having expressed delight at the fact that it was going to be a sunny day she closed her eyes and died peacefully with her family around her.
It is my belief that without this forward planning afforded by the LCP, and by preempting problems, Mrs A and her family could not have achieved their longed for wishes.
Ongoing analysis of the variances shows that the level of documented evidence of care has increased dramatically. Proactive prescribing of medication is now the norm. There is strong evidence of good communication between families and the staff caring for them. Patients and carers wishes are taken into account. Unnecessary interventions have ceased. Equity of care can be demonstrated. Staff have written (p. 136 ) evidence to highlight problems. Evidence from the variances has been used to change procedures and practice for availability and delivery of vital equipment. Difficult case scenarios have been resolved by collaborative working. Crisis admission to hospital in the dying phase is reduced and in many cases totally eliminated, as both medical and nursing staff have increased confidence in looking after dying patients.
Feedback was given to staff at locality meetings and a six monthly written review was planned to incorporate all the variances that had been highlighted in that same period.
Initially the implementation of the LCP was for patients dying of cancer, but its use has now been extended to encompass the care of all patients dying at home. The reality of its impact was highlighted in a letter received from the widow of a patient who had renal failure. She stated:-
(p. 137 ) A direct link was established between the nursing home, the research assistant, and the consultant so that the data from our LCP could be analysed and fed back to the unit. The implementation of the LCP was quite straightforward. The unit was small and therefore the bureaucracy very limited. The document was simply implemented.
It was clear from these findings it was going to be important to work with GPs and with the local pharmacy to overcome these problems. With great difficulty, meetings with all the local GP practices were arranged to discuss the LCP and the analysed data. Many of the GPs expressed concerns regarding the prescription of medication on a sliding scale and in advance of use. It was agreed that a trial using the next three appropriate patients should be undertaken before reviewing the situation.
The local supply pharmacist was also contacted and the difficulties were explained. It was agreed the drugs required by the protocol within the LCP would be stocked and also an emergency contact system would be arranged. The trial with three patients was very successful and it was possible to positively review the practices developed with the GPs involved.
(p. 138 ) The profile of the nursing home increased dramatically over a two year period and we were receiving referrals for some very complex cases. The LCP had enabled us to care effectively for complex symptoms and we were able to prove this fact. Staff within the home find the document invaluable. It is easy to use, less time-consuming than the Kardex system, and enables staff to effectively treat the patients in their care. Many staff commented that they found the document useful in teaching other professionals and carers. The LCP became part of the induction training for all new staff. After a period of approximately three years, the local GP practices started to send the GP registrars to the home to be educated in how to use the LCP. We have also taught Pharmacy students.
Nursing students had been regular attendees at the home prior to the implementation of the LCP. Following its implementation we were able to offer more effective teaching and the comments received on evaluation documents were extremely positive with regard to the learning experience. In summary the implementation of the LCP in the nursing home environment requires:
It is not easy to implement any change. Often it is a long and hard struggle, but one which is well worth the effort involved. The benefits by far outweigh the difficulties and the most important outcome is that quality of care can be proven and deficits identified and acted on.
Outcomes of implementing the LCP:
Knowing that you do a good job and being able to prove it are two different things. The LCP facilitates the achievement of both aims. Staff were empowered by the use of the LCP. The care given was research based and provided legal protection, in that the practices undertaken were considered and proved to be best practice. Patient care was regularly evaluated and symptoms where possible proactively treated.
It should be remembered that the LCP is not written in stone and can be amended to suit specific site requirements. The protocols in the nursing home setting are different from those in all other localities and the LCP was altered to encompass these differences. Assessment and after death formalities were altered to facilitate the needs of the unit and the protocols set down by the registering authority. Undoubtedly the nursing home's profile has improved as a result of the LCP. Prior to the LCP, nursing (p. 139 )home staff often felt like second class professionals working in an environment that had been criticized for many years. The implementation of the LCP has increased staff confidence, self-esteem, and credibility with other professionals.
In conclusion the LCP proved that a small nursing home could provide effective care to those who are dying and to their families. The difficulties of caring for the dying in the nursing home environment are complex and should not be underestimated by other professionals. It is an environment that is nurse led. There are no on-site facilities if a patient deteriorates and nursing staff have to be competent and active in forward planning the care of their patients. They need to have a broad knowledge and to be skilled in the assessment of a patient and in the risk assessment of potential emergency situations and to be fully aware of the procedures to be undertaken. In this environment nurses are the prime professionals responsible for the safe delivery of care. It is often the case that the nursing staff is more knowledgeable than the medical staff with regard to the palliative care needs of the patients and the medications required. This is a result of nurses giving care on a daily basis. Medical staff do not do this. Nurses in the nursing home need to be assertive and it is important to support their practices. Supporting documentation was made available for nurses to utilize if there were any differences in opinion as to the best protocol for care.
If patients are unable to die at home for whatever reason the nursing home environment can provide care in a home style surrounding. This should not be undervalued. Nursing homes can provide a unique environment for patients and their relatives at a time of grief and stress and the importance of this should not be underestimated. In turn nursing homes must provide ‘best practice’ care based on current research. Managers and owners of homes must encourage learning and development not only for qualified nurses but for all staff. Care assistants are major contributors to care in this environment and their contribution should not be undervalued. Nursing homes can provide care equal to that of any other establishment of care. NOW WE CAN PROVE IT!
DOI:10.1093/acprof:oso/9780198509332.003.0008
Abstract and Keywords
This chapter discusses the implementation of the Liverpool Care Pathway for the Dying Patient (LCP) in hospitals, hospices, communities, and nursing homes. It looks at the reasons why the LCP should be implemented in these places and what factors are involved during its implementation. The chapter also identifies the specific challenges in implementing the LCP and the benefits of each setting.
In the Hospital—Alison Foster
Why implement the Lcp in the hospital setting?
The process of developing the LCP involved the time and resources of an energetic and committed team of people. Our vision in developing the LCP across the continuum of health care settings was to identify the needs of dying patients and their families, in the hospital, hospice, nursing home, and community. Initially the LCP was developed to translate the hospice model of best practice into the acute hospital setting. It was hoped that this would transform and improve the quality of care of the dying patient and their family.Most patients die in an acute hospital setting. The Office of Population Census and Surveys 2000 (1) revealed that of all deaths 67% occur in hospital, 29% in the community, and 4% in a hospice. Since these statistics are unlikely to radically alter in the near future, it is essential to focus on ways in which care of the dying in the acute sector can be improved. The development of Hospital Specialist Palliative Care Teams (HSPCT) and improved medical and nursing undergraduate training have recently improved the care of the dying (2). However, despite the rapid growth and integration of HSPCTs over the last decade, it is unrealistic to expect them to care for all dying patients within their organization. For example, The Royal Liverpool University Hospitals Trust has approximately 2000 deaths per year. The HSPCT is currently involved in the care of 15% of patients dying in the Trust. It is therefore the HSPCTs responsibility to provide education and evidence/research-based guidelines of best practice for the generic multidisciplinary team, to empower them to care for the 85% of dying patients whom the HSPCT are not directly involved with.
(p. 122 ) What does implementation of the Lcp in the hospital involve?
A multidisciplinary working party was formed to consider how best to adopt the culture of care pathways into the specific palliative care needs of patients dying in the acute hospital setting. Members of the working party included: Macmillan Palliative Care Nurse Specialists, a Consultant in Palliative Medicine, a Care Pathways Manager, members of the ward teams, representatives from the pastoral care team and general office, and a pharmacist. Also there was further consultation with hospice, community, and nursing home palliative care specialists. It is important to emphasize the value of seeking executive endorsement and support from within your organization at the early stage of implementation. The working party also discussed and identified the key stages necessary for successful implementation and developed a strategy to meet these needs. The strategy comprised six areas (these have been further developed into the Ten step education strategy described in Chapter 7) which are discussed in more detail below:- ◆ Base review.
- ◆ Supporting documentation.
- ◆ Education programme.
- ◆ Pilot study.
- ◆ Implementation and ongoing support.
- ◆ Audit and feedback.
Base review
A review of previous and current practice was undertaken to provide a baseline of the current level of knowledge and practice within the trust to enable a comparison to be made post-implementation. The base review involved the retrospective study of a random selection of 20 sets of patientsʼ case notes focusing on the patientsʼ last 48 hours of life. A proforma based on the goals and outcomes specified in the LCP, was developed to record the data collected. The difficulty with the base review was that since documentation was so fragmented, it was challenging to establish what care the patients had actually received during the last days of life. Findings demonstrated areas for concern such as poor and inappropriate symptom control. For example, diamorphine was routinely given for agitation and distress rather than a benzodiazepine. There was also no evidence of anticipatory prescribing and there were examples of inappropriate interventions. For example, intravenous hydration was continued until death in the majority of patients. Poor communication with the primary health care team and little documentation of spiritual and religious support were also noted. However, it is important to mention that the base review also highlighted good practice.A confidential questionnaire was distributed to all auxiliary, qualified nursing and medical staff to ascertain their knowledge base and give them an opportunity to express how effective they felt they were in caring for dying patients and what they felt could be improved. There was a 70% response rate. The results highlighted the need for education concerning symptom control in the dying patient. However, some ward staff felt what they needed most of all was access to more Macmillan nurses rather than access to relevant education and guidelines of best practice.
(p. 123 ) Supporting documentation
A number of supporting documents were identified/developed and made available to all ward areas in the form of a resource folder. The documents underpinned the goals identified in the LCP and ranged from local policies and guidelines to national publications.Specific information to support the patient's family/other was also identified and developed, comprising:
- ◆ Hospital facilities and accommodation leaflet.
- ◆ Bereavement leaflet.
- ◆ What to do after a death—DSS (3).
- ◆ Hospital general office booklet.
Education programme
It was evident from the outset that ward staff would require encouragement, help, and support to ensure effective use of the LCP. However, this alone was not sufficient. The culture and attitude of a workforce suffering from poor morale, continual pressure, and lack of time also needed to be addressed (4) to truly empower the generic worker and bridge the theory/practice gap.Initially, two key nurses from each ward area were invited to attend a study day, followed by regular meetings. The key nursesʼ responsibility was to disseminate their knowledge to their colleagues. This strategy was unsuccessful because the information did not filter through to the ward area and the care pathways were only being used when the key nurses were on duty.
As a result a new strategy was implemented. It seemed that it would be more effective to allow all nurses access to a short ward-based teaching session. The reformed education programme included the nomination of two key nurses from each ward to assist with LCP implementation, repeated compulsory 30 minute planned teaching sessions for all nursing staff within a four to six week period. Training sessions were included within the induction programmes of newly appointed and overseas nurses.
The education of junior medical staff was challenging due to inherent difficulties and time constraints. It was decided to give them an opportunity to learn about the LCP in a variety of ways. For example, one-to-one ward-based teaching and teaching during their pre- and post-registration tutorials. Senior medical staff gained information during presentations at multidisciplinary and clinical governance meetings and Grand Round presentations.
It is important to note that a commitment to ongoing education is crucial after the LCP has been implemented to sustain the project. We also identified other related educational requirements as a consequence of our increased profile in the ward areas.
Pilot study
A pilot study was conducted on three medical and wards and three surgical wards. We chose wards that had a high mortality rate, where we felt that the LCP would have greatest impact, and where the HSPCT already had a high profile. The pilot allowed (p. 124 )maximum support to be given to wards using the LCP and also thorough evaluation of its implementation.Permission was sought from the relevant managers and consultants to launch the LCP with a view to obtaining blanket approval and consensus. There was a strong element of interest and support with few objections raised.
Once the pilot study began, regular meetings were held with the multidisciplinary working party and ward staff. As a result the LCP was refined into its present format.
Implementation and ongoing support
Once the educational programme and pilot study were completed, the LCP was ready to be launched. A strategy comprising specified milestones over a 12 month period was developed to provide a supportive structure and framework for ward staff to facilitate smooth implementation of the LCP. This is outlined in the education chapter.The milestones include working with the nominated key nurses, making daily ward visits to answer queries, and develop ward staff's knowledge and confidence. Feedback of variance analysis and audit to key nurse/ward team is also a key part of the education package. It is useful to monitor the number of deaths occurring on the ward, to enable staff to see how many patients had been put on the LCP, and if a patient had not been put on the pathway to establish why not.
After six months implementation, data analysis should be presented back to the ward team so that the information cycle is complete and staff begin to develop a sense of ownership of the LCP project. It is beneficial to provide staff with a forum in which they can discuss specific anecdotal data and evaluate experience. To undertake a post-implementation review may also be helpful at this stage, to compare results with the initial base review.
Over this period of time it is likely that the wards will develop autonomy using the LCP. Less input is required from the HSPCT. However, it is imperative to formalize a plan with the key nurse/multidisciplinary team to sustain the project.
The team co-ordinating the project may then focus on another area in which to implement the LCP. It is our experience that it would not be possible to launch the LCP across the all wards of the hospital at the same time, as it is likely that there would not be the manpower available to support implementation sufficiently.
Audit and feedback
Audit and variance analysis are vital aspects of the LCP cycle. Pre-implementation, the identification of the audit process and manpower cannot be stressed highly enough. This was one of our biggest challenges. However, we are now fortunate to have designated audit time from within the Trust. Another important practical note is to ensure that systems are in place to trace and obtain the LCPs from the medical notes once they are completed. Not being able to find the LCPs makes audit impossible.Analysis based on data collected from the pilot ward demonstrated favourable outcomes which, when compared to those achieved in the hospice setting were similar. Significant improvements were evident when the outcomes were compared to the initial base review. This data suggests that the LCP had improved the care of the dying patient in the hospital setting.
(p. 125 ) What are the specific challenges of implementing the Lcp in the hospital?
We encountered many challenges along the way, the majority of which were anticipated but needed careful, sensitive consideration to overcome them.- 1. From the perspective of the ward team, the most difficult dilemma for the nurses and clinicians was to know when to use the LCP and diagnose dying. This is particularly difficult when patients have been acutely ill or in a post-operative state, or indeed, for some patients with a non-malignant disease where the disease trajectory may be unpredictable. The ward team should be reassured that the LCP is not one way and if a patient's condition improves the LCP can be discontinued.
- 2. Occasionally negative attitudes were encountered. For example, the LCP was perceived as ‘cookbook medicine that discouraged appropriate clinical judgement from being applied in individual patient's care’. Opinions such as these usually stem from a lack of understanding and experience, highlighting a need for education.
- 3. Some nursing staff found it difficult to accept that the LCP replaced all other forms of documentation, such as the nursing Kardex, and some were under the misapprehension that they had to complete both.
- 4. Occasionally staff working within highly specialized areas of health care questioned what the LCP could teach them about improving the care they give to their patients. This is understandable but it is relevant to demonstrate the other benefits of using LCPs, for example the ability to demonstrate quality of care, and meeting clinical governance requirements.
- 5. The HSPCT had unrealistic expectations of how many deaths we would encompass within the LCP. We have since learned that there can be valid reasons why the LCP is not used, for example in the case of a sudden death, a cardiac arrest, or difficulty in diagnosing dying, or perhaps simply a member of staff being unfamiliar with the tool.
- 6. The biggest challenge was that we did not realize how costly this project was going to be, in terms of time, manpower, and sustenance. However, after five years working with the project, we are reaping the benefits. More importantly, the patients and their families who die within our Trust are reaping the benefits, together with the staff who care for them.
What are the benefits for the hospital setting?
The benefits of implementing the LCP are numerous, far exceeding our expectations. At ward level, implementation of the LCP improved documentation and communication within the multidisciplinary team, promoting teamwork. It also enhanced communication between health care professionals and patients. By generating outcomes of care, the LCP demonstrated quality of care and provided a mechanism for audit leading to the identification of future research and development questions. It is also a useful tool to demonstrate to purchasers and users of the service the standards achieved regarding care of the dying in line with the NHS cancer plan (5).The benefits to the ward teams are that the LCP appears to encourage successful teamwork, communication, and care planning. There is less time spent on paperwork, (p. 126 ) freeing more time to deliver patient care. The LCP provides a framework that enables staff to deal with situations they may have found difficult previously, developing a sense of empowerment, safe in the knowledge that they are delivering high quality evidence-based care. This is enormously valuable not only when caring for a particular patient but in strengthening a sense of purpose, morale, and satisfaction in staff.
Feedback of data informs staff of good practice. This is very important in the acute health care setting when staff often feel undervalued. The number of complaints related to death and dying within the hospital has fallen since implementation of the LCP.
In addition to being a powerful education tool, the LCP has contributed to the development of the palliative care Network Nurse Programme (NNP), which aims to promote an improved and integrated service. It promotes a forum for continual, shared learning to improve care for patients who need a palliative care approach (6).
The impact upon the HSPCT is demonstrated by the reduction in the number of referrals to the team. The referrals are now more complex in nature and utilize more appropriately the expertise of the specialist team. In addition, data analysis identifies research and development questions that will have a direct impact upon patient care, together with demonstrable outcomes of care.
What does the future hold?
The implementation programme has been extended Trust-wide incorporating non-cancer patients. In particular, a model for care of dying stroke patients and patients who discontinue renal dialysis have been developed and successfully implemented. A care pathway for intensive care unit patients is currently under development.In the hospice/specialist palliative care unit—Elaine Rosser
Why implement the Lcp in the hospice setting?
Why do we need the LCP in the hospice setting when the care given is already excellent? The quality of the service is well recognized and care is delivered by a team of palliative care specialists. The value of the LCP lies in its ability to demonstrate measurable outcomes which provide evidence that we are delivering this high standard of care. The LCP is an excellent tool that identifies variances from normal practice. This provides us with a means to audit the reasons for the variance and change practice as required.What does implementation of the Lcp in the hospice setting involve?
The implementation of the LCP involves a clear understanding of the issues around change management (7). It is important that key people are assigned to the project. (p. 127 ) They need be given the time and resources to move the project forward. One of their primary roles is to work with the team in a variety of ways to provide the support necessary for successful implementation of the LCP.Education
It is of crucial importance that an ongoing education programme is put in place for all professionals involved in the project. When the LCP was being developed at the Marie Curie Centre Liverpool some of the staff were initially resistant to the LCP. They already had specialist knowledge and skills in palliative care and were documenting the care that they were giving, and could not see why they needed to use a pathway. However, following a series of meetings with staff it became evident that in some areas care was not always documented clearly and this could lead to confusion or lack of clarity. This can result in time being wasted in establishing a treatment plan for the patient. Discussion about the purpose, layout, and content of the LCP evoked lively debate. These discussions enabled us to focus on the roles of each professional and how these roles can sometimes overlap. This helped us to achieve a greater awareness of how we function as a team and highlighted the importance of team working and clear communication channels.Pathway link nurse role
The Marie Curie Centre Liverpool seconded an experienced palliative care E grade staff nurse two days a week to focus on the project of implementing the LCP in the hospice setting. This role was crucial to the success of the project. This was because:- 1. The postholder had a ‘grass roots’ understanding and ‘strategic’ knowledge of the value of the LCP to patient care.
- 2. The postholder had the clinical and managerial credibility to be able to challenge false views and champion concerns from staff that needed to be addressed.
- 3. The postholder had the time and resources to carry out the role successfully.
Initially, a series of open meetings were held for all staff to plan the time-scale for implementation of the LCP in the hospice. At a later stage structured meetings were held. Information packs and one-to-one group teaching sessions were made available to all staff.
A considerable amount of time was invested in establishing clear channels of communication. The importance of establishing this structure and the energy required to ensure the success of the project cannot be underestimated. The link nurse role remains of crucial importance in the Centre today. It has expanded to encompass the implementation of other pathways, for example, a Discharge pathway. It also now involves presenting at meetings and conferences and supporting pathway implementation across other Marie Curie centres.
Variance feedback
Whenever changes are introduced into an organization, feedback is necessary to demonstrate to staff how that change has benefited practice. Change can be exciting, but it is hard work and can be exhausting. Motivation needs to be continually (p. 128 )stimulated. Regular feedback encourages this. The pathway link nurse held regular feedback sessions. They were received positively by all staff. The variance analysis was a useful means of auditing the care being given. It also provided evidence to support the need for change when this was challenged and assisted in the implementation of change when it was necessary.Documentation
Initially fears and worries were expressed, particularly by nursing staff that the pathway format did not allow for the individuality of the patient or clinical decision making. However, when patient notes were reviewed, it was evident that much of the documentation relating to their care was repetitive, was not relevant or measurable, and was often disjointed.Previously, it was an arduous task for the team caring for a patient to trawl through the records to ensure that they read all sections of the notes, i.e. nursing, allied health professions, social work, doctors, etc. There was a danger that if all the notes were not read, then an important element might be missed. The staff were encouraged to become involved in the design and structure of the documentation and became aware of the value of variance reporting. This led to a greater acceptance of the pathway. Today the hospice team would find it unacceptable not to utilize the LCP. The benefits have far outweighed the initial concerns.
What are the specific challenges of implementing the Lcp in the hospice setting?
Managing change
The management of change is an ongoing process. It is important to plan and implement change carefully so that it is effective and efficient with positive outcomes (8).Understanding of the Lcp
Professionals in palliative care invest a considerable amount of time working outside the hospice providing education and support to other organizations. It is necessary to make it clear that patients who meet the criteria to go on an ICP may well come off the pathway if their condition improves.Sharing of the Lcp in other hospice/health care settings
It is important that the hospice takes a lead in supporting other areas for development of the LCP in their setting. The challenge to the hospice is to be able to provide the time and resources required for dissemination of the LCP outside of the hospice. The demands on the specialist team to provide their expertise are great.The publication of the National cancer plan (5) and its implications for palliative care have increased the demand for expert consultancy as more and more organizations recognize the value care pathways as a means of measuring outcomes. Cancer Networks have now been established across the country and this national strategic (p. 129 ) approach to palliative care services has already resulted in the establishment of major education programmes on the LCP. For example, a district nurse education programme has been set up by the Merseyside and North Cheshire Cancer Network. The aim of this is to ensure that all staff gain a sound understanding of the purpose and value of the LCP and its role in improving care for dying patients.
What are the benefits for the hospice setting?
The LCP provides a formalized, structured tool which informs health care professionals when they are providing care of a high standard, but also highlights where there is room for improvement.Example (a)
In the Marie Curie Centre Liverpool (MCCL) an audit was undertaken of the variances recorded on mouth care. This seemed to indicate that patients were not receiving mouth care at all. Following discussion with the nursing staff it became apparent that the patients were in fact receiving mouth care but that the wording and structure of this section of the pathway was ambiguous. The wording was subsequently modified and the ambiguity removed.Example (b)
The LCP was expanded to include a section on Care After Death. This ensured that the patient's GP practice is always contacted to inform them of the patient's death. Prior to this there was no formalized documentation of this information and occasionally GPs were not informed of a patient's death. This was not acceptable.Commissioning
The hospice works in partnership with the National Health Service which provides financial support for the services it gives (9, 10). It is important that the hospice is able to demonstrate how these services improve the quality of care for their patients (10). The LCP is an effective way to demonstrate these outcomes. The pathway analysis results provide useful evidence when requesting financial support due to increased dependency of patients. Prior to the LCP it was very difficult to provide evidence to back up such a request. The hospice knew it provided excellent care but had no way to demonstrate this.In conclusion the LCP is an excellent research-based teaching tool for professionals and students who are not experienced in palliative care. Its structured approach allows for the holistic individual needs of each dying patient and ensures that all aspects of their care are addressed whether the needs of the patient are physical, psychosocial, emotional, or spiritual. It is an excellent tool that fits well into the clinical governance agenda (11, 12). It facilitates and fosters a culture of continual constructive challenge to clinical practice. How can we improve? What is working well? What is not? And what do we do about it? These questions are often asked and yet are not always fully addressed in a structured way. The pathway provides a clear way forward to do this.
The LCP is an excellent tool to benchmark Care of the Dying practices with other hospices and other settings. It encourages collaborative working practices with professionals and a sharing of practice developments that are research based.
(p. 130 ) In the community—Margaret Kendall
Why implement the Lcp in the community?
There is nothing more satisfying to a community nurse than to provide best standard of care in someone's own home. Supplement this with enabling a dying patient to die at home in accordance with their wishes and Utopia is reached.In reality however, this is not always be possible. This leads to feelings of frustration and inadequacy on the part of the health care professional, anguish to the patient, and guilt on the part of the carer.
All too often everything appears to be in place to care for a dying patient at home, but because of an escalation of symptoms, lack of knowledge and understanding on the part of the health care professional, or lack of communication between health care professional and carer, patients would be transferred in their final days or even hours of life to a hospice or hospital, leading to feelings of frustration and inadequacy.
The aim of implementing the Liverpool Care Pathway for the Dying Patient (LCP) in the Community was to provide a structure that could be used across the Community Trust to address these problems, as from discussions it became apparent that there was no measurable, equitable service being provided. The LCP provides a framework for care, which can be adapted to the individual patientsʼ and carersʼ needs and wishes. By setting out the intended practice in the form of a document, the opportunity arises to provide measurable care that is clearly outcome based, but with the flexibility for adaptation.
A base review undertaken prior to using the pathway highlighted that interventions were being undertaken which were unnecessary and there were areas of educational deficit that needed to be addressed by a programme of education.
The initial assessment of the patient prior to inclusion on the LCP follows the same criteria used within both the hospice and hospital settings. Because of the different setting, i.e. the patientsʼ home, some of the goals on the other pathways were not applicable necessitating minor adaptation.
It was hoped that by implementing the LCP in the community, problems could be anticipated, and suitable solutions prepared preemptively, and the nursing staff would have a measure of satisfaction at the standard of care being achieved.
What does implementation of the Lcp into the community involve?
The former North Mersey Community Trust is an area with diverse social, economic, ethnic, and cultural strata. Some areas have very high unemployment, social deprivation, and drug problems. Other areas are extremely affluent with highly educated inhabitants. The only thing they appeared to have in common was that a cohort among their inhabitants would die of cancer.The first problem we encountered was to set up a working party to examine the feasibility of initiating such a concept into the community. Only a handful of (p. 131 ) like-minded people felt they could set aside enough time to work on the project. A core team of four people examined the concept in more depth, familiarized themselves with the documentation, and set out an action plan to take forward what would undoubtedly be a huge project.
It was decided that the implementation would take place slowly, to lessen the possibility of failure of the project. Nevertheless there was an unexpected degree of cynicism when discussions first took place. There was a feeling among many of the nursing staff that this would prove to be yet another ‘paper exercise’, with extra work for them with no positive outcomes. It was necessary to have three separate discussion sessions, with all staff concerned, when the original document was redrafted for community use.
Among many of the interesting discussions that took place was one around the title of the document itself. Some staff felt uncomfortable that the word ‘dying’ was included in the script, bringing into question whether the staff themselves had issues with the fact of death, and they found this difficult to cope with, not the title of the document itself.
Base review
Before any new way of working could be implemented a base review to obtain a picture of the current situation was undertaken. Six sets of case sheets of patients who had recently died at home from cancer, were requested from each locality in North Mersey. This gave 36 sets of notes to review.In spite of the staff in the localities all being briefed on the project, and knowing what we were undertaking there was an air of suspicion. Why did we want the notes? What were we looking for? Were we checking up on the nurses?
We also examined the corresponding notes in the GP surgery but found that in the majority of cases, not only could we not decipher the writing, but also there was very little supporting evidence that we could use for review.
Figure 8.1 Results of the base review.
(p. 132 ) Feeding back the results of the base review required huge amounts of diplomacy to allay the anxiety of the staff at this point. We were clear to reinforce that the evidence from this base review was not unusual, and whilst we were confident that the care had been undertaken, we were seeking written evidence to support the facts.
Pilot project
The next part of the process was to compile all the evidence from the base review into a presentation, with an outline of the project to prepare staff for pilot project.It had previously been agreed that the documentation used in the hospital setting should be replicated for community use. The only changes made were to parts of the pathway, which clearly were pertinent to acute sector only, e.g. resuscitation status, collection of belongings after death, collection of certificates from general office, etc. These parts were deleted and appropriate interventions pertinent to the community inserted.
It was decided that the document and implementation of the LCP should be piloted in two very different general practice settings. One practice consisted of five GPs, already proactive in palliative care, with a good supportive primary health care team. Patient mix was varied as the practice had two surgeries, one in a socially deprived area with high rates of unemployment, and the other in a new estate with low rates of unemployment and generally inhabited by professionals and affluent families. The other pilot site was a single-handed GP practice in an inner city area. Staffing levels in the PHCT were often poor, due to sickness and unavailability of staff. The patient population was a mix of elderly patients, and a large ethnic minority population.
Staff in the practice were given additional training and education on the project, and extra support was given to the PHCT. Collaborative visits with nurses to dying patients on the LCP were given by the project team, in order to ensure problems were not arising due to misinterpretation. After a few initial hiccoughs this worked well.
Initially it was envisaged the pilot would run for three months in each practice. However, numbers of patients fitting the criteria to be entered on the LCP were slow to recruit, the project was therefore extended for another three months in order to give a more meaningful evaluation. After six months, 16 patients, all dying of cancer, had been placed on the pathway. Mean time on the pathway was three days, with a range of three hours to ten days. The numbers of episodes of pain and agitation were analysed and the results demonstrated:
- (a) The documentation was more comprehensive.
- (b) The nurses achieved a high level of satisfaction at the care they were able to give.
- (c) No patients were transferred from their chosen place of death.
Problems highlighted were the delay in obtaining vital equipment, and the lack of ability to obtain necessary medications out of hours. This latter point only arose on one occasion and was in fact due to the proactive prescribing of medication not taking place.
Analysis of the data from the pathways was undertaken by the audit department of the Trust, and was presented back to the pilot practice. A comparison with the pre-pathway data from the pilot practices showed that the implementation of the LCP made a measurable difference to the documented care of patients dying at home.
(p. 133 ) Post-implementation audit showed that the level of documented evidence had risen dramatically.
Wider implementation
Following this successful pilot study it was agreed that the project should be implemented on a Trust-wide basis. Because of the number of GP practices within the Trust, approximately 130 at the time of the implementation, a process had to be devised to roll the programme out. Letters were sent to each practice, outlining the project, and containing the results of the pilot study. Practices were asked to self-nominate to take the project forward in the first wave. Forty practices nominated themselves, and by chance the spread across the area was good. The Community Macmillan Clinical Nurse Specialists working in each area agreed to be key people to assist their own practices, in conjunction with the district nurses.Education programme
A rolling programme of education was provided for all members of the PHCT involved in the second wave. Staff were familiarized with the documentation. The educational programme also involved the following:Education programme
Pain control.
Management of nausea and vomiting.
Management of constipation.
Communication skills.
Dealing with collusion.
Dealing with loss and bereavement.
Psychological issues around caring for dying patients.
How nurses deal with loss and grief.
Management of syringe drivers.
Breaking bad news.
Handling difficult questions.
Ethical issues in palliative care.
This programme was delivered by the Macmillan Community Clinical Nurse specialist team on an ongoing basis. It was delivered as a two-day course with workshops, case studies, and self-directed study as an integral part of the day.
Additional support was given to nurses when they initially cared for a patient who fitted the criteria for pathway inclusion.
Refresher sessions had to be held for some staff that attended the initial training, but then had no patients who fitted the criteria for some time and had forgotten (p. 134 ) something of the process. Pathway updates were included on the education programme provided by the Macmillan CNS team in order to keep the LCP high profile.
This same process was undertaken for two further cohorts of interested practices. The remaining practices that had not put themselves forward to undertake the project were also contacted. Trying to implement the LCP in these practices was problematic. Eventually the project was implemented across the entire Trust, although with antagonism in some areas.
What are the specific challenges of implementing the Lcp into the community?
The initial problem was one of suspicion when undertaking the base review as previously recounted. Other problems varied from outright hostility of some staff that the way they were delivering care should be examined, to feelings that this was a paper exercise and would not make a difference. Sadly some of the antagonism remains to date and a very small number of nurses refuse to fill in the documentation. The LCP project is still in place three years later, with a real difference being made to care of patients dying at home with close communication being undertaken with the carers.What are the benefits for the community setting?
Variances from the pathway were analysed in batches of 10 by the Trust audit department and the data collated. After a six month period of wide implementation 86 patients had been cared for using the LCP.The results are as shown in Figure 8.2. These show a considerable improvement from the initial base review results shown in Figure 8.1.
Case history
Mrs A was a 56-year-old lady who had been diagnosed in 1997 as having a Pancoast tumour of her right lung. Her initial treatment of radiotherapy had proven to be successful in that she was relatively symptom free for a period of nine months with only minimal medication.
Figure 8.2 Results after wide implementation.
On two occasions she had to be taken to hospital at the weekend as an emergency admission, when perhaps with forward planning this could have been avoided. Referral to the Macmillan Clinical Nurse Specialist took place after the second admission and a joint visit was undertaken with the district nursing care manager to the patient's home. Assessment of the needs of Mrs A and her family took place. Following the guidelines set out in the LCP it was decided that a supply of the most commonly used drugs should be made available in Mrs As home. The GPs written permission to give them was sought, should the nursing staff deem it to be necessary. A supply of diamorphine, hyoscine hydrobromide, and midazolam was obtained, together with a syringe driver for subcutaneous administration of the drugs.
These supplies remained untouched in the patient's home for 15 days. The family and Mrs A all expressed a feeling of reassurance from knowing that they were there, and that Mrs A could hopefully achieve her wish to die at home without another admission to hospital.
On the afternoon of the 16th day Mrs As condition deteriorated. She complained of feeling extremely dyspnoeic, and had developed marked oedema in her face and upper thorax. Following telephone discussion with her GP, the district nurse set up the syringe driver containing a small quantity of diamorphine and hyoscine. The GP visited later and found Mrs A to be settling comfortably, with no obvious distress. She roused slightly during the evening and complained that she was getting some chest pain, but said she could cope with that but was frightened because she realized that she was dying. The night district nursing team were contacted, and called to give a subcutaneous injection of midazalom and diamorphine.
Mrs A spent a comfortable night, and roused again soon after dawn. She was not in pain and was calm. She asked her family to open the curtains so she could see the sun coming up. Having expressed delight at the fact that it was going to be a sunny day she closed her eyes and died peacefully with her family around her.
It is my belief that without this forward planning afforded by the LCP, and by preempting problems, Mrs A and her family could not have achieved their longed for wishes.
Conclusions
In conclusion although very time-consuming initially and fraught with administrative difficulties the project was a very worthy one. With hindsight a larger full-time project team would have been useful as the majority of the work was done by myself and a pathway co-ordinator, who was also working on other projects. Without the support of my CNS colleagues I would have been unable to undertake this work. One of the most time-consuming parts of the project was the education both pre- and during implementation. This has been quantified as around 72 hours for cross Trust implementation. This element alone should not be underestimated in time or intensity.Ongoing analysis of the variances shows that the level of documented evidence of care has increased dramatically. Proactive prescribing of medication is now the norm. There is strong evidence of good communication between families and the staff caring for them. Patients and carers wishes are taken into account. Unnecessary interventions have ceased. Equity of care can be demonstrated. Staff have written (p. 136 ) evidence to highlight problems. Evidence from the variances has been used to change procedures and practice for availability and delivery of vital equipment. Difficult case scenarios have been resolved by collaborative working. Crisis admission to hospital in the dying phase is reduced and in many cases totally eliminated, as both medical and nursing staff have increased confidence in looking after dying patients.
Feedback was given to staff at locality meetings and a six monthly written review was planned to incorporate all the variances that had been highlighted in that same period.
Initially the implementation of the LCP was for patients dying of cancer, but its use has now been extended to encompass the care of all patients dying at home. The reality of its impact was highlighted in a letter received from the widow of a patient who had renal failure. She stated:-
“Because my husband had been ill for so long I always knew what dialysis and blood tests were due on which day. When he came home to die I felt that there was no longer a plan. When the nurse came and talked to us about the pathway I knew this was what we were missing. While we didn't know how long ………. would live, at least we knew that everything was being taken into account. This made so much difference to the two of us.”
This says it all!
In the nursing home setting—kim Barrow
Why implement the Lcp in the nursing home setting?
Many nursing homes provide an excellent standard of care to patients, particularly those who are dying. In the past it has not been possible to prove this fact. As a nursing home matron, I often felt that the care given in the nursing home environment was considered by many to be inferior to that given in other settings. The Liverpool Integrated Care Pathway (LCP) provides proof of the high standard of care being given.What does implementation of the Lcp in the nursing home setting involve?
Before implementing the LCP, it was necessary to carry out a base review using data from the records of past patients. The base review confirmed that the care being given was of a high standard and that the patients had died peacefully. However, this was not being adequately documented. With the full support of the palliative care consultant and local Macmillan nurse the LCP was introduced by the following means:- (a) Education of staff relating to the document itself.
- (b) Explanation to staff as to the benefits of the document and the impact it would have to patient care documentation.
- (c) Discussion with GPs involved in the care of our palliative patients.
(p. 137 ) A direct link was established between the nursing home, the research assistant, and the consultant so that the data from our LCP could be analysed and fed back to the unit. The implementation of the LCP was quite straightforward. The unit was small and therefore the bureaucracy very limited. The document was simply implemented.
What are the specific challenges of implementing the Lcp in the nursing home setting?
One difficulty we did encounter was with the introduction of the LCP to the GPs in the community. Many GPs have little contact with dying patients on a daily basis and may only care for one or two patients a year. They are often unfamiliar with protocols for symptom control. This is compounded by the use of the out of hours service. Doctors providing this service are often seeing the patient for the first time and are reluctant to prescribe the use of a syringe driver and the drugs required for effective symptom control. The first cohort of the LCP to be analysed demonstrated from the variance analysis that:- (a) GP refused to prescribe medication in line with protocol.
- (b) Out of hours service refused to prescribe medication.
- (c) Medication not available out of hours at local pharmacies.
It was clear from these findings it was going to be important to work with GPs and with the local pharmacy to overcome these problems. With great difficulty, meetings with all the local GP practices were arranged to discuss the LCP and the analysed data. Many of the GPs expressed concerns regarding the prescription of medication on a sliding scale and in advance of use. It was agreed that a trial using the next three appropriate patients should be undertaken before reviewing the situation.
The local supply pharmacist was also contacted and the difficulties were explained. It was agreed the drugs required by the protocol within the LCP would be stocked and also an emergency contact system would be arranged. The trial with three patients was very successful and it was possible to positively review the practices developed with the GPs involved.
What are the benefits for the nursing home setting?
Forward planning is of the utmost importance in the nursing home setting. In this environment there is not the luxury of an on-site doctor or stock medications. It is therefore necessary for the staff to be proactive. This is something that the LCP encourages. It is vital that medication is prescribed as soon as it is assessed as necessary so that it can be obtained quickly and be on-site ready for use. It is important to establish a relationship of trust with the prescribing GP. To build such a relationship takes time and it was policy in the nursing home that no syringe driver should be commenced without consultation with myself as the specialist practitioner. Nursing staff felt more comfortable with this and the GPs felt that this gave them more confidence in prescribing proactively. The GPs also liaised with the out of hours service if the patient was expected to die, so that the doctor on duty would be aware of the treatment protocol. This proved to be very successful.(p. 138 ) The profile of the nursing home increased dramatically over a two year period and we were receiving referrals for some very complex cases. The LCP had enabled us to care effectively for complex symptoms and we were able to prove this fact. Staff within the home find the document invaluable. It is easy to use, less time-consuming than the Kardex system, and enables staff to effectively treat the patients in their care. Many staff commented that they found the document useful in teaching other professionals and carers. The LCP became part of the induction training for all new staff. After a period of approximately three years, the local GP practices started to send the GP registrars to the home to be educated in how to use the LCP. We have also taught Pharmacy students.
Nursing students had been regular attendees at the home prior to the implementation of the LCP. Following its implementation we were able to offer more effective teaching and the comments received on evaluation documents were extremely positive with regard to the learning experience. In summary the implementation of the LCP in the nursing home environment requires:
- ◆ Determination.
- ◆ Belief.
- ◆ Patience.
- ◆ Team building.
- ◆ Proactive planning.
- ◆ Collaboration.
It is not easy to implement any change. Often it is a long and hard struggle, but one which is well worth the effort involved. The benefits by far outweigh the difficulties and the most important outcome is that quality of care can be proven and deficits identified and acted on.
Outcomes of implementing the LCP:
- ◆ Proof of best practice.
- ◆ Holistic documentation.
- ◆ Multi-professional recognition.
- ◆ Trained staff recruitment and retention.
- ◆ Improved staff morale.
Knowing that you do a good job and being able to prove it are two different things. The LCP facilitates the achievement of both aims. Staff were empowered by the use of the LCP. The care given was research based and provided legal protection, in that the practices undertaken were considered and proved to be best practice. Patient care was regularly evaluated and symptoms where possible proactively treated.
It should be remembered that the LCP is not written in stone and can be amended to suit specific site requirements. The protocols in the nursing home setting are different from those in all other localities and the LCP was altered to encompass these differences. Assessment and after death formalities were altered to facilitate the needs of the unit and the protocols set down by the registering authority. Undoubtedly the nursing home's profile has improved as a result of the LCP. Prior to the LCP, nursing (p. 139 )home staff often felt like second class professionals working in an environment that had been criticized for many years. The implementation of the LCP has increased staff confidence, self-esteem, and credibility with other professionals.
In conclusion the LCP proved that a small nursing home could provide effective care to those who are dying and to their families. The difficulties of caring for the dying in the nursing home environment are complex and should not be underestimated by other professionals. It is an environment that is nurse led. There are no on-site facilities if a patient deteriorates and nursing staff have to be competent and active in forward planning the care of their patients. They need to have a broad knowledge and to be skilled in the assessment of a patient and in the risk assessment of potential emergency situations and to be fully aware of the procedures to be undertaken. In this environment nurses are the prime professionals responsible for the safe delivery of care. It is often the case that the nursing staff is more knowledgeable than the medical staff with regard to the palliative care needs of the patients and the medications required. This is a result of nurses giving care on a daily basis. Medical staff do not do this. Nurses in the nursing home need to be assertive and it is important to support their practices. Supporting documentation was made available for nurses to utilize if there were any differences in opinion as to the best protocol for care.
If patients are unable to die at home for whatever reason the nursing home environment can provide care in a home style surrounding. This should not be undervalued. Nursing homes can provide a unique environment for patients and their relatives at a time of grief and stress and the importance of this should not be underestimated. In turn nursing homes must provide ‘best practice’ care based on current research. Managers and owners of homes must encourage learning and development not only for qualified nurses but for all staff. Care assistants are major contributors to care in this environment and their contribution should not be undervalued. Nursing homes can provide care equal to that of any other establishment of care. NOW WE CAN PROVE IT!
References
Bibliography references:
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