British Heart Foundation heart failure palliative care project report: The Glasgow and Clyde experience
British Heart Foundation heart failure palliative care project report: The Glasgow and Clyde experience Final Report October 2010 Author: Yvonne Millerick, BHF heart failure palliative care specialist nurse, NHS GG&C Co-authors: Jackie Wright, BHF heart failure palliative care specialist nurse, NHS GG&C; Alison Freeman, Clinical effectiveness co-ordinator, NHS GG&C
Acknowledgements The authors would like to thank: All health and social care professionals who contributed to this project for their assistance and ongoing support, especially those people working across heart failure, cardiology, medical, care of the elderly, specialist palliative care, generalist palliative care, social, voluntary and primary care settings who took time out of their busy schedules to give expert advice and consideration to particular issues as they emerged. Mr John Carson, Lead Nurse and the NHS, Greater Glasgow & Clyde Heart failure specialist nurse service for their ongoing contribution, participation, general hard work and evaluation throughout the project. The NHS Greater Glasgow & Clyde’s GP Out of Hours Service. Amy Bowen for her editorial input and to the Research and Evaluation Group for the BHF/Marie Curie Cancer Care Caring Together Programme for commissioning and overseeing the evaluation. Mrs Lynda Blue, BHF Healthcare Professional Project Manager for writing the project bid during her role as lead nurse for the heart failure specialist nurse service in NHS Greater Glasgow & Clyde, and to the British Heart Foundation for providing the funding which made this project work possible.
Evaluation of this project This evaluation was funded by the Caring Together Programme. Caring Together is a partnership between Marie Curie Cancer Care, the British Heart Foundation and NHS Greater Glasgow and Clyde. Caring Together aims to develop an improved approach to the management of palliative care for patients in the advanced stages of heart failure and their carers.
Contents Executive summary
1
Chapter 1 Background to the project
3
1.1 Heart failure and prognostic uncertainty
3
1.2 Heart failure services in Glasgow
4
1.3 Rationale for the heart failure palliative care project
4
1.4 Preceding projects
5
1.5 Terminology
5
Chapter 2 Project aims and objectives
6
2.1 Project description
6
2.2 Aims
7
2.3 Objectives
7
2.4 Key questions
8
2.5 Project personnel
8
Chapter 3 Project design and delivery 3.1 Project approach
9 9
3.2 Patient identification
11
3.3 Referral
11
3.4 Assessment
12
3.5 Planning care
12
3.6 Joint visits and collaborative working
12
3.7 Ethical issues
12
Chapter 4 Data collection
14
4.1 Method
14
4.2 Data sources
14
4.3 Development of the heart failure palliative care database
14
4.4 Data analysis methodology
14
Chapter 5 Results - Quantitative
15
5.1 Identification of group 3 patients
15
5.2 Demographics
16
5.3 Symptom burden
16
5.4 Hospital utilisation
18
5.5 Out of hours activity
19
5.6 Heart failure specialist nurse contact
19
5.7 Contacts with other professional services
20
5.8 Deaths
20
Chapter 6 Results – Qualitative
21
6.1 Carers understanding and concerns
21
6.2 Patients’ understanding and concerns
21
6.3 Joint working
21
Chapter 7 Discussion
23
7.1 Main findings
23
7.2 Implications
26
7.3 Future direction
27
Appendices:
28
1 Framework
28
2 Data tables
33
3 Carer analysis
40
4 Patient analysis
42
5 Staff questionnaires
43
6 Joint working
50
7 Advanced communication bid
51
8 Database specification
56
9 References
72
Executive summary Heart failure is an increasingly common, chronic, progressive and debilitating condition with a significant physical, social and psychological symptom burden. Despite advances in the evidence based management of heart failure, mortality rates remain high and heart failure is associated with a mean life expectancy of 3.1 years from diagnosis. Sudden death is a significant feature of the syndrome, but equally, patients with heart failure have high utilisation rates of both secondary care outpatient and in-patient services. Since December 2006, the NHS Greater Glasgow & Clyde Heart failure specialist nurse service (HFSNS) has been involved in a three year British Heart Foundation funded supportive palliative care project. The project aimed to systematically define a set of patients identified by the heart failure specialist nurses from their existing patient caseload who would be appropriate for a supportive palliative care approach. A framework was designed to identify, comprehensively assess and implement realistic goals of care for the patients and their caregivers. A wholetime equivalent post was created to support the project and was staffed jointly by a heart failure specialist nurse and a specialist palliative care nurse. This partnership approach enabled the teams to share skills and support the heart failure specialist nurses (HFSNs) with joint visits and work-based learning opportunities, using the skills and experiences from the two specialties. The following report describes the project, its aims and objectives and provides an analysis of the data gathered. Overall, the project aimed to consider whether a supportive palliative care approach can be encompassed within the existing HFSNs role; whether patients can be identified appropriately in view of such an uncertain trajectory; and the extent to which the supportive/palliative care needs of patients and their care givers is currently being met within the HFSNS.
Key findings from the project The project has highlighted that it is achievable to integrate a supportive palliative care approach effectively into the existing HFSN role. Some HFSNs demonstrated they were able to implement this approach effectively with minimal or no support, whilst others required additional and continued support, which was exclusively available from within the project. The report shows that it does require additional time from the nurses to take a more holistic approach to care and to engage in some of the complex conversations with patients and carers about priorities for care. Without additional time and ongoing support for some HFSNs it remains unclear whether this is sustainable within the constraints of the usual service. The inclusion criterion identified a significant percentage of patients in the last months of life. A number of patients did not meet the inclusion criteria but nonetheless died during the project, many of whom were either still being optimised on evidence-based therapy or died suddenly. Given the uncertain trajectory of heart failure, this was not surprising. More work to develop robust and accurate inclusion criteria and increased HFSN experience in patient identification would be welcome.
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Executive summary
Meeting the supportive palliative care needs of patients is most challenging where the focus of care is placed on the heart failure symptoms and pharmacological regimes, with less attention paid to the holistic needs of patients. It may be that adapting the standard assessment process to include consideration of holistic needs would improve earlier identification of patients and also help increase the skills and confidence of the HFSNs in engaging patients in discussions about their priorities for care. Multi-professional working is a vital component of supporting patients with advancing heart failure, and there are examples within the project of the value of discussions and co-ordinated approaches to patient support that bring the HFSNs and specialist palliative care services together. Education and training to support the HFSNS across care settings is vital and should be sustained, including access to advanced communication skills training. Further assessment of the training needs of the HFSNs, and particularly for the wider community of health and social care professionals who are involved in the care of patients with advancing heart failure, is also required.
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Chapter 1 Background to the project 1.1 Heart failure and prognostic uncertainty Heart failure is a common, chronic, progressive and debilitating condition that leads to extensive physical, psychological, social and spiritual problems.1 The Scottish Intercollegiate Guidelines Network (2007) define chronic heart failure as a “complex clinical syndrome that can result from any structural or functional cardiac or non-cardiac disorder that impairs the ability of the heart to respond to physiological demands for increased cardiac output.”2 Heart failure is not a diagnosis; it is a syndrome that is characterised clinically by breathlessness, effort intolerance, fluid retention, and poor survival.2 The commonest cause of heart failure is myocardial dysfunction; with about two thirds of this related to coronary heart disease (CHD), usually secondary to myocardial infarction.2 Heart failure is the only cardiovascular disease increasing in incidence.2 A combination of improved cardiological treatments and risk factor trends are thought to be responsible for this.1 It is estimated that 66,000 new cases of heart failure are diagnosed each year in the UK and that 912,000 of the population aged 45 years and over have definite/probable heart failure. Life expectancy is increasing and the incidence of heart failure in the 75-84 years age group is 7% and 15% in those aged 85 years and above.3 The lifetime risk of heart failure is one in five for both men and women. The high levels of morbidity associated with heart failure are demonstrated by high utilisations of both secondary care outpatient and in-patient services. NHS Greater Glasgow and Clyde figures for 2008 recorded 1890 hospital discharges with a primary diagnosis of heart failure. These generated a total of 24,230 bed days occupied giving a mean length of hospital stay of 12.8 days. The societal costs of heart failure are also extremely high and are estimated to be equivalent to 1.91% of the total NHS expenditure, with the predominant cost being hospitalisation.4 Despite significant advances in the evidence based management of heart failure, mortality rates remain high.4,5 Heart failure is, in most cases, incurable, and with the notable exception of lung cancer, heart failure is as “malignant” as many common cancers and is associated with a mean life expectancy of 3.1 years from diagnosis.5 The British Heart Foundation (BHF) estimates that 4% of deaths each year in the UK are attributable to heart failure and that 40% of deaths occur within one year of diagnosis with only 25% of men and 36% of women surviving to five years.1-5 Sudden death remains a significant feature; figures quoted in the wider literature range from 25-50% and can occur at any stage during the course of the heart failure disease trajectory. The increasing use of automated implantable defibrillators however, should positively impact on this risk. Heart failure is characterised by an unpredictable decline with only a proportion of patients having a demonstrable deterioration. Many patients experience acute symptomatic exacerbations that respond positively to medical intervention. For others however, periods of decline can be relentless and interspersed with increasing symptoms that are distressing, debilitating and difficult to treat.6 This unpredictable disease trajectory invariably leads to uncertainty and subsequent prognostic paralysis.14,15 Heart failure very seldom comes in isolation and is often associated with co-morbid conditions, cognitive decline, polypharmacy and increasing social need.27 Consequently, living with heart failure and its co-morbidity places a considerable burden on patients and their care givers. It also presents several challenges for healthcare professionals working across different care settings.
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Chapter 1: Background to the project
1.2 Heart failure services in Glasgow The Glasgow heart failure specialist nurse service (HFSNS) is nurse-led and was established following a randomised controlled trial carried out in Glasgow between 1997-1999. The trial showed significant reduction in hospital re-admissions and hospital bed days related to heart failure due to left ventricular systolic dysfunction (LVSD). As a result of the positive outcome of the trial the Health Board in Glasgow funded the nurse-led city wide service, which commenced operation in July 2000 and has been successfully replicated throughout the UK.7 At present, patients in the service are referred either from cardiology outpatient clinics or following a hospital admission with symptoms of heart failure decompensation secondary to LVSD, normally confirmed using the gold standard of echocardiography.2 The aim of the service is to provide a combination of home visits and nurse-led clinic review for the purpose of providing ongoing education, skilful assessment and intensive monitoring following implementation of evidence based pharmacological and non-pharmacological care in accordance with the service and national guidelines.2,8 The service covers eight acute hospital sites across NHS Greater Glasgow & Clyde. This is the largest Health Board in Scotland, serving 1.2 million patients, covering almost a quarter of the entire population. The overall caseload of the HFSNS is approximately 1400 patients and 1.5 whole time equivalent (wte) heart failure specialist nurses are located at each of the acute hospital sites. Existing staffing levels are based on current levels of activity and service demand. This approach to heart failure management is evenly distributed throughout NHS Greater Glasgow and Clyde and has now become the standard model of heart failure care throughout the UK.
1.3 Rationale for the heart failure palliative care project The National Council for Palliative Care (2005) has asserted that patients dying from advanced heart failure remain disadvantaged compared to their peers suffering from cancer, in terms of symptom control management, communication and access to palliative care support networks.9 This view is echoed by the Scottish Partnership for Palliative Care (2008) and is increasingly reflected in a range of UK policy documents.10-13 Such inequitable practice arises from the historical focus of palliative care services being designed for those patients on a cancer trajectory, which is often associated with a quick and predictable functional decline within the last six to 12 months of life.14 By comparison, as described in Section 1.1, heart failure is characterised by an unpredictable decline with only a proportion of patients having a demonstrable deterioration. Several studies also demonstrate high rates of unmet needs in areas of symptom management, communication, decision making, emotional support and co-ordination of supportive/palliative and end of life care. Patients with heart failure have reported a poorer quality of life than those with most other chronic progressive disease.16-19 They also lack knowledge about their condition and poor prognosis which inevitably leads to inappropriate goals of care and results in prolonged hospital re-admissions.18,19 Much of the research addressing the problem of heart failure tends to focus on the disease itself with an emphasis on pharmacological regimes to improve measurable outcomes. As a consequence, the experience of persons living with the disease is often neglected.17-19 The subjective perspective of those who suffer the illness is often dismissed by our pursuit for life prolonging medical invention. There has begun to be a shift in attitude amongst leading cardiologists and palliative care specialists across the UK with respect to the supportive and palliative care needs of patients with heart failure.15 The needs of these patients and their carers for appropriately timed, clinically robust palliative care, sensitive to the prognostic uncertainty of heart failure yet still taking account of the significant symptom burden
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Chapter 1: Background to the project
experienced by many patients, is now acknowledged, at least in principle. Transferring this into everyday clinical practice however, remains challenging, particularly in the absence of additional clinical time, current knowledge gaps and the availability of additional resources. This project was launched in order to address some of the practical issues in identifying patients with heart failure who would benefit from a supportive/palliative care approach, and the aim to develop an approach to the delivery of that care within current service configurations.
1.4 Preceding projects An audit was conducted in 2005 by a local heart failure specialist nurse. The aim of this audit was to identify the number of patients from the heart failure nurse’s existing case load that remained NYHA III or IV and who had ongoing symptoms despite being on optimal tolerated evidence based heart failure therapy. The audit was conducted over a period of six months across five heart failure sites in Glasgow. During the six month audit period 73 patients were identified from a total patient caseload of 766 (10%). It was concluded that these patients could potentially benefit from a supportive palliative care approach.
1.5 Terminology HFSNS
Heart failure specialist nurse service
HFSNs
Heart failure specialist nurses
LVSD
Left ventricular systolic dysfunction
NYHA
New York Heart Association
Group 3 Patients are regarded as group 3 following identification by the HFSNs for inclusion into the project Key clinician A clinician who is well known to the patient, for example the consultant cardiologist, consultant physician and in a minority of occasions the general practitioner (GP). Throughout the project the key clinician was always a doctor.
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Chapter 2 Project aims and objectives 2.1 Project description Since December 2006, the NHS Greater Glasgow & Clyde heart failure specialist nurse service has been involved in a three year BHF funded supportive palliative care project. The project set out to define a set of patients who could in the first instance be identified by the HFSNs from their existing patient caseload. Following identification, discussions would then take place with the key clinician to determine if they agreed that the patient was appropriate for a supportive palliative care approach. Using a consistently applied set of inclusion criterion as described in section 3.3, the participating patients were drawn from the existing HFSNS caseload. A framework (Appendix 1) was specifically designed and developed to support the HFSNs to identify, comprehensively assess and implement realistic goals of care for the patients and their caregivers throughout the project term. Identification: The HFSNs used the table in (Appendix 1a) to categorise their existing patient case load into one of three groups.
l
roup 1 were patients who were successfully optimised on evidenced based heart failure G treatment and following a period of stability were discharged from the HFSNS.
l
roup 2 were patients who were still being optimised on evidenced based heart failure therapy. G Once these patients were optimised and they had a period of stability they would also be discharged from the HFSNS.
l
roup 3 were patients who were considered by the HFSNs to be on optimal heart failure G treatment however despite this they continued to be NYHA III or IV and had distressing and debilitating symptoms that were difficult for the HFSN’s to manage. These patients were looked upon by the HFSNs as being at higher risk of living and dying with their supportive and palliative care needs not being met.
Discussion: following identification of a group 3 patient, the HFSN would then initiate a discussion with the patient’s key clinician. The key clinician was either the consultant cardiologist, consultant physician and on very rare occasions the patient’s general practitioner. The aim of this discussion was to give the key clinician the opportunity to comprehensively assess the patient and to determine what the future goals of care should be. For some patients additional cardiological treatment to optimise the patients evidence based heart failure treatment was indicated and therefore measures to implement this treatment were commenced. For others it was decided that they were already receiving optimal cardiological treatment and it was therefore agreed that these patients could potentially benefit from a supportive palliative care approach (Appendix 1b). Assessment: Assessment of patient and carer needs took many different forms and included multiprofessional working with key people from all care settings. In one HFSNS site the assessment was conducted in the format of a weekly multi-disciplinary team meeting. A collaborative clinic style approach was undertaken at a second site and for other sites it was a one to one discussion approach between the HFSN and wider professionals working across the primary and secondary care interface. Examples of professionals who were frequently involved in the patient and carer assessments included district nurses, palliative care specialists, general practitioners, occupational therapy, benefits and social work advisors. This list was not exhaustive and changed in response to the patient and the care giver’s requirements. Heart failure palliative care
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Chapter 2: Project aims and objectives
To support key areas of assessment, a checklist (Appendix 1c) was created to support the HFSNs and the key clinician to co-ordinate the assessment discussion and decisions regarding future goals of care. Documentation: From this discussion and assessment a management plan highlighting the patient and carer’s goals of care in relation to treatment status, advanced care planning and priorities of care was created by the HFSN (Appendix 1d). This management plan was agreed and signed by the key clinician and then verified by all key professionals who were involved in the discussion, assessment and ongoing delivery of care. A copy of this management plan was given to the patient’s GP who then registered the patient on the Gold Standard Framework and sent a copy of the management plan to the Out of Hours Emergency Care Service. An additional copy was also kept in a safe place in the patient and their caregiver’s home. Fast track summary: In recognition that hospital admission for this group of patients could not always be avoided particularly in the absence of robust community diuretic protocols, a fast track summary (Appendix 1e) documenting the goals of care was created in collaboration with key professionals. This summary involved an alert being registered against the patients name on the hospital electronic system. Consequently when the patient presented to Accident and Emergency the alert would be highlighted and the hospital staff would be encouraged to read the fast track summary which would either appear on the electronic hospital system or would indicate the location within the Accident and Emergency (A&E) department where the document was stored. The fast track summary improved the opportunity to reduce the patient’s waiting time in A&E, offered the possibility of the patient being discharged back home following review and appropriate treatment. In circumstances where admission could not be avoided, it was hoped that the fast track summary would hasten the patient’s transfer to the ward area, inappropriate investigations could be avoided and that the overall hospital length of stay would be reduced. This approach to heart failure management is not commonly encompassed within the existing heart failure management programmes across the UK. Similarly key aspects of assessment, discussion and documentation specific to priorities of care are not regularly encompassed within the HFSNs role in NHS Greater Glasgow and Clyde.
2.2 Aims Using a defined cohort of patients the main aim of this three year project was: To identify patients with advancing heart failure disease earlier in their disease trajectory and to develop a professional inclusive approach to the delivery of supportive palliative care within the existing HFSN’s role.
2.3 Objectives l
T o increase awareness amongst healthcare professionals, improve access and equity of supportive, palliative and end of life care for persons living with heart failure.
l
T o decide if the inclusion criterion as described in section 3.2 is sensitive enough to identify appropriate patients.
l
T o encourage the integration of the palliative care philosophy into everyday heart failure clinical practice; recognising realistic goals of care at each stage of the disease.
l
T o support collaborative working amongst professionals by sharing knowledge, skills and expertise across different care settings.
l
T o collect data relating to the patient, their caregivers and the professional journey to underpin evidence that could be used to inform future clinical practice and further research. Heart failure palliative care
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Chapter 2: Project aims and objectives
2.4 Key questions Key questions to be answered throughout the project: l
Can a supportive palliative care approach be encompassed within the existing HFSNs role?
l
Can patients be identified appropriately in view of such an uncertain trajectory?
l
re the supportive/palliative care needs of patients and their care givers currently being met within A the HFSNS?
2.5 Project personnel One whole time equivalent nursing post was created for a period of three years to lead the project, and initially consisted of two part time positions; one heart failure clinical nurse specialist (0.5wte) and one palliative care clinical nurse specialist (0.5 wte). However, due to changing employment circumstances, the palliative care hours became vacant for a period of six months until a replacement palliative care specialist nurse joined the project (0.3wte) for the remainder of the project term. Despite this, the project aims and objectives remained unchanged. A clinical effectiveness co-ordinator was also involved with the project and supported the database design and extraction and analysis of captured data. The HFSNs were actively involved in patient recruitment and inputting data onto the specific database fields as per project criterion.
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Chapter 3 Project design and delivery 3.1 Project approach The project was funded by the British Heart Foundation for a period of three years and began in December 2006. The original project bid was to undertake the heart failure palliative care project across five heart failure sites in Glasgow. During 2007 however, Glasgow and Clyde merged following a service redesign and it was agreed that the project should encompass the three additional heart failure sites located in Clyde to ensure service equity. Key project milestones Key milestones
Jan 07 Apr 07 Jul 07 Oct 07 Jan 08 Apr 08 Jul 08 Oct 08 Jan 09 Apr 09 Jul 09 Oct 09 Jan 10 – – – – – – – – – – – – – Mar 07 Jun 07 Sep 07 Dec 07 Mar 08 Mar 08 Sep 08 Dec 08 Mar 09 Mar 09 Sep 09 Dec 09 Mar 10
Network Scoping execise Design/develop project specific data base Design/develop framework to support HFSNs Implementation of database at each site Support/ guidance to HFSNs with database and framework Patient recruitment Development/ implementation of 2 pilot projects
1 Aug
31 July
May
Oct
Data extraction/ analysis Writing up projects findings
Year 1 Jan 2007-Dec 2007 Networking across NHS Greater Glasgow and Clyde to raise the project’s profile and to ensure professional engagement across all care settings. This involved presenting at a variety of meetings, educational forums and conferences. Scoping exercise to explore existing frameworks that were being utilised elsewhere in the heart failure management programmes across the UK was conducted. From this we were able to establish that there was very limited information available and developing a framework to support the HFSNs in Glasgow would not be duplication of work carried out elsewhere.
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Chapter 3: Project design and delivery
Database: Designed and developed the heart failure palliative care project specific database in partnership with the clinical effectiveness co-ordinator for NHS Greater Glasgow & Clyde who has a designated remit for cardiology liaison within the acute sector. Framework: Designed and developed a framework to support the HFSNs with patient identification. This framework included patient inclusion criteria, comprehensive assessment triggers, anticipatory management plan template and a fast track summary template for patients requiring hospital admission (Appendices 1a-e).
Year 2 Jan 2008 – Dec 2008 Networking continued and invitations to present at various education forums and conferences increased. Database: The development of the database and framework was completed, and therefore implementation, guidance and support were conducted at each of the eight HFSNS sites. Due to staffing difficulties at one of the smaller sites, it was agreed that this site would be exempt from the data collection process. Recruitment: The formal 12 month patient recruitment into the project commenced August 2008
Year 3 Jan 2009 – Dec 2009 HFSN support: Provision of ongoing support to each of the HFSNs continued following patient identification. This support took many forms and included joint patient home visits, collaborative discussions with key clinicians to determine goals of care. Meticulous data collection was supported and entered throughout the 12 month project term and entered into the appropriate database fields. Development of pilot sites: In keeping with collaborative working, a six week programme was developed and implemented in Clyde in May 2009. This programme was collaboratively delivered and involved a variety of different health and social care professionals. This provided support to the patient and their caregiver and also supported the HFSN with ongoing communication and goals of care. Following the success of this pilot a second project was developed and implemented at a busier HFSNS site, and involved collaborative working with a cardiologist who had a special interest in heart failure and palliative care. This pilot was jointly delivered in partnership with the palliative care clinical nurse specialist and patients were referred for comprehensive assessment and co-ordination of care following project identification by the HFSNs. Both these programmes are still operational to date. Patient recruitment into the project stopped on 31 July. Data: Extraction and analysis of data was undertaken by the heart failure palliative care project nurse and the clinical effectiveness co-ordinator. This began Sept 2009 and was completed by Dec 2009.
Jan 2010 – Mar 2010 Analysis and reporting of main findings was conducted and formally written in a report format.
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Chapter 3: Project design and delivery
3.2 Patient identification All patients identified throughout the project were known to the HFSNS, had a confirmed diagnosis of heart failure secondary to left ventricular systolic dysfunction (LVSD) and were referred to the service following a hospital admission. Patients were initially identified for inclusion into the project by the HFSNs using the following inclusion criterion: l
NYHA Classification III/IV
l
egarded by the HFSNs to be on optimal/target doses of evidence based heart failure therapy as per R the local heart failure medical therapy guidelines
l
Had progressive symptoms that were distressing and/or debilitating
l
equired increased monitoring by the HFSNS eg home visits/clinic contact and/or a hospital R admission
l
equired frequent medication changes in response to difficult/resistant symptoms and/or change in R their condition.
Evidence based heart failure medication Patients identified by the HFSNs were regarded as being on optimal tolerated doses of heart failure evidenced based therapy which included one or all of the following: l
Ace inhibitor
54%
l
Angiotensin receptor blocker
16%
l
Combined Ace-I / ARB
l
Betablocker
68%
l
Aldosterone antagonist
40%
l
Loop diuretic
95%
l
Thiazide diuretic
33%
l
Hydralazine
l
Nitrates
3%
3% 16%
A combination of the above therapy was constantly tailored in response to individual patient needs and changing condition. NB: This data represents whether the medication groups had ever been started, not necessarily whether or not they had been continued.
3.3 Referral Patients were recruited to the project following initial identification by the HFSNs as group 3 and then following subsequent discussion and consent from the key clinician as having met the full inclusion criterion for the project.
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Chapter 3: Project design and delivery
3.4 Assessment As described previously in section 2, patients identified as meeting the criteria for group 3 were regarded as having advancing heart failure. The ensuing comprehensive assessment of these patients was undertaken by the key clinician and HFSN at each site to determine if additional cardiological treatment was required to improve clinical outcomes. If further cardiological treatment or device insertion was clinically indicated, this was pursued and a review date to assess the patient’s clinical response to the additional intervention was agreed. If no further therapeutic interventions were thought to be indicated, the comprehensive assessment encompassed discussions around care priorities such as symptom management considerations, cardiopulmonary resuscitation status, device deactivation and exploration of the patients anticipated preferred place of care options. Hospital admission for many patients with advancing heart failure cannot be avoided. Therefore it would be misleading to suggest to patients and their carers that home directed care could be implemented and sustained in all circumstances, particularly when the duration and specific characteristics of the disease trajectory is so uncertain.
3.5 Planning care From the assessment, key professionals were identified to support the planning and delivery of care. Discussions regarding planning care took many different forms across the HFSNS and ranged from a weekly multi-disciplinary team approach, a collaborative supportive palliative care clinic and one to one professional discussions involving a full variety of health and social care professionals. The HFSNs were encouraged to participate with joint visiting both in the acute hospital and community environment involving the district nurses, palliative care specialist nurses and professionals working with the hospice outreach.
3.6 Joint visits and collaborative working The purpose of the joint visits was to provide professional support for both the heart failure and palliative care specialist nurses and also to ensure that significant conversations around priorities of care for the patient and their caregiver were carried out in a supportive environment. These discussions were viewed as part of a process of planning care and never considered a one-off event. They required skilful facilitation in response to patient and caregivers questions, as well as the expertise and experience of both heart failure and palliative care professionals. It was hoped that by engaging in a person-centred approach, a key principle of palliative care, that it would encourage a shift away from a disease-centred approach. Furthermore, it is hoped that multi-disciplinary working would encourage an informal transfer of knowledge and skills and would increase confidence amongst the professionals working with the patient and their caregivers.
3.7 Ethical issues The project proposal was approved by leading service providers across NHS Greater Glasgow & Clyde by whom the project nurse was employed. The project was regarded more as service evaluation, and for this reason was not classified as research. There was no reference made to intervention groups as the current provision of care management within the HFSNS is designed around the plethora of evidenced based heart failure guidance (Greater Glasgow & Clyde Medical Therapy Guidelines and SIGN). The project outcomes will be aligned to the key project questions and the recently launched supportive palliative care
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Chapter 3: Project design and delivery
standard highlighted in the NHS Coronary Heart Disease Quality Improvement Scotland 2010. Additional consent was given by the lead consultant cardiologist and lead nurse for the HFSNS who signed off the original project bid application. As the project nurse is currently working within the HFSNS across NHS Greater Glasgow & Clyde, access to the patient sample was approved. Confidentiality was regarded as a critical ethical issue and disclosure of information was stored on an NHS password protected computer database which was secured in one of the HFSNS locked offices. The HFSNs at each of the eight sites across NHS Greater Glasgow & Clyde used strict inclusion criteria to identify appropriate patients. Patient consent was not required for the project as all patients had previously given their consent upon referral to the HFSNS and existing standards of care delivery remained unchanged. The project was conducted with the highest level of integrity throughout the three year project term.
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Chapter 4 Data collection 4.1 Method Data collection and data entry were undertaken by HFSNS staff who were provided with a period of induction and ongoing support by the project nurse. Unfortunately duplication was required onto both the existing heart failure database (ATHENA) and the project database and it is important to acknowledge that it was difficult for the HFSNs to do this within the time constraints of their workload. We are grateful that staff were so supportive in facilitating such additional data collection where possible.
4.2 Data sources Interim analysis highlighted that there were gaps in the level of information available across some of the participating sites. To both augment and validate the data collected within the ATHENA and project databases, we accessed additional information from a variety of sources: l
PMS Systems: All three independent patient management systems in use across the acute sector of NHS GG&C which included biochemistry, haematology and admissions modules
l
GP Out of Hours system: Access was available to access the system used across NHS GG&C to monitor patient contact outside the regular working pattern of the HFSNS
l
SMR01 Data: Scottish Morbidity Record for Inpatient Admissions. This was requested from the Department of Information Services at Health Board in order to review and validate admission cause and length of stay.
4.3 Development of the heart failure palliative care database In response to the limited data profile on the existing heart failure database currently used across all heart failure sites in NHS GG&C, an additional project specific palliative care database was designed by the project nurse and clinical effectiveness co-ordinator for the duration of the project. It included the main clinical sections already recorded on ATHENA and was enhanced with the facility to also record: l
Patient and carer concerns
l
An extensive symptom assessment form
l
Professional services log
l
Bereavement summary
The database specification is available as Appendix 8.
4.4 Data analysis methodology Data was uplifted from each participating site by the clinical effectiveness co-ordinator. It was centrally merged, then analysed independently of both the HFSNS and the project nurses using statistical software (SPSS v16.0). The raw data collected is shown through a series of tables (Appendix 2). Heart failure palliative care
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Chapter 5 Results - Quantitative 5.1 Identification of group 3 patients l
The data collection period for the project was for 12 months from 1 August 2008 to 31 July 2009.
l
Total number of HFSNS caseload during this period (Service caseload SC) = 1400.
l
Total number of patient deaths during this time period from within the HFSNS (SD) = 278 (20% of SC).
l
Total number of patients identified by the project (Patients identified PI) =126 (9% of SC).
l
Of the 126 patients identified by the project (PI), number of deaths (PD) = 57 (45% of PI and 20% of SD).
l
Following a review of all the HFSNS deaths (over the same period), a further 54 deceased patients were found to have met the project inclusion criteria but were missed by the HFSNs (Potential miss PM). Had these patients been identified, the total number of potential patients identified by the project (PPI) would have been (PPI) =(PM) + (PI) or 180 patients.*
l
Of the 180 potential patients identified by the project (PPI), a total of 111 died (PPID) = (PD) + (PM). This is 62% of (PPI).†
l
There were a remaining 167 patients who died who could not have been identified by the project because they died suddenly, were still titrating at the time of death or died from other causes, including malignancy or stroke.
* As these patients were not identified by the project, they are not included in any of the project data analysis. Additionally, there may also have been some further patients who would have met the criteria but who did not die during the time period. †
We know that this percentage is an estimate of the real percentage – given some may have died outside of the time period and some who may have met criteria (but who were not picked up) have not been picked up on review because they did not die during the period.
Deaths out with project scope
No of patients
45 40
Sudden
35
Other Titrating
30
Potential miss
25 20 15 10 5 0 H1
H2
H3
H4
H5
H6
H7
Hospital site
Heart failure palliative care
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Chapter 5 Results - Quantitative
It is difficult to determine the number of still-active patients who would potentially have met the group 3 criteria without reviewing each patient record individually, and for this reason, it is important to highlight that the number of group 3 patients could be significantly higher.
5.2 Demographics 5.2.1 Sex Many more men (74%) than women had their care defined within the supportive and palliative care project. This varies from observed recruitment to the HFSNS where the split has been consistent at around 60% male and 40% female (Appendix 2, Table 1).
5.2.2 Age The age range is 18 years to 100 years with a median of 75 years which is similar to the annual age range reported by the HFSNS (Appendix 2, Table 2).
5.2.3 Deprivation Within the project, 40% of patients lived within areas of high deprivation in contrast to the expected levels of around 58% seen in the HFSNS annual reports. However, it should be noted that these observations are historical and are prior to the inclusion of Clyde sites (Appendix 2, Table 3). This would support that overall deprivation within these Community Health & Care Partnerships is lower than those in Greater Glasgow as highlighted by data from the Scottish Neighbourhood Statistics Office (www.sns.gov.uk). Previous HFSNS reports have traditionally used the Carstairs Index (“Deprivation and Health in Scotland” Carstairs V, Morris R; Health Bull (Edinb.1990 Jul; 48 (4):162-75) to analyse patient demography and it was also used for the purpose of this report in order to establish a robust comparison, rather than use data from the most recently published Scottish Index of Multiple Deprivation (2009).
5.2.4 Ethnicity This has not been previously recorded within the ATHENA database so there is no baseline data available to measure against, but within the project only 3% were of non-White origin, all of whom were of Asian descent (Appendix 2, Table 4).
5.2.5 Social status Of the 126 patients identified, only 33 (26%) lived alone (Appendix 2, Table 5). Of the patients who did not live alone, 74% of them relied on their spouse to provide their care. The remainder were supported by children, siblings or other (Appendix 2, Table 6).
5.3 Symptom burden Shortness of breath, symptom and pain control have been highlighted as patients main concerns at end of life 18,21 with the fear of death often being associated with the onset of these symptoms.5,18,21 The Edmonton symptom assessment tool20 was used to create consistency with symptom recognition and scoring of patients within the project. However, it must be recognised that the use of any tool is dependent on the knowledge and skill of the healthcare professional, and it can be extremely subjective
Heart failure palliative care
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Chapter 5 Results - Quantitative
from the patient’s perspective. Furthermore, throughout the project, although this was recommended as a desirable measure of the patient’s symptom burden, only 82 patients (65%) had their symptoms recorded. From those patients who did have an Edmonton Assessment carried out, dyspnoea, fatigue, weakness, insomnia, cough, anorexia, PND and generalised pain excluding cardiac pain were the main symptoms reported. Other symptoms routinely reported are highlighted in Appendix 2, Table 11. Sadly, these findings highlight the significant symptom burden often tolerated by this patient group as reflected in the wider literature.1,5,18 Such findings may support the use of a recognised tool to promote improved symptom assessment and management in everyday clinical practice. 26 Baseline aetiology of heart failure was largely ischaemic (75%) and the majority had severe LV impairment (38%), 66% were NHYA III and all had a range of co-morbidity, the most prevalent of which was renal impairment (48%) (Appendix 2, Tables 7-10).
5.3.1 NYHA classification The measurement of NYHA classification was recorded at each consultation for all patients. This classification selected for the purpose of the project was the one which has been the most consistent over time. As expected, 66% of patients were recorded as being NYHA III. Of the four patients whose NYHA class was unrecorded on the Athena dataset, information regarding their classification was captured from the HFSN assessment documentation that was communicated to the GP in the form of a letter following either a home visit or clinic consultation. From this it was possible to establish that these patients were also either NYHA class III or IV (Appendix 2, Table 9).
5.3.2 Co-morbidity As heart failure seldom comes in isolation, many of the project patients had one or more co-morbid diseases such as angina, asthma, chronic obstructive pulmonary disease, diabetes and renal impairment which was noted to be the most common (48%) amongst this group (Appendix 2, Table 10).
Admission episodes/Bed days for deceased patients Total bed days
700
Total admission episodes
50
500
40
400 30 300 20
200
10
100 0
Total admission episodes
Total bed days
600
60
0 H1
H2
H3
H4
H5
H6
H7
Hospital site
Heart failure palliative care
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Chapter 5 Results - Quantitative
5.4 Hospital utilisation Hospital admissions were reviewed on two levels; patients who were still alive at the end of the data collection period and those who died during this period. For the 57 deceased patients, a full review of all hospitalisations in the year prior to their death was completed. Length of stay data for patients who were still alive was collected upto and including 31 July 2009. However, as some of them were still inpatients at this date, it was not possible to capture the accurate number of hospital bed days that each patient incurred beyond this date. For this reason, such data should be regarded as being taken from a snapshot in time and the number of bed days incurred could be greater for those reasons cited above.
5.4.1 Hospital admission rates Sixty-nine live patients generated 129 admissions ranging from one to eight (median=2). Fifty-seven deceased patients generated 231 admissions ranging from one to 10 (median=3) (Appendix 2, Tables 12, 13).
5.4.2 Cause of admission During the period of data collection, IT systems across each of the eight participating sites were in transition and three independent applications were operational at the time of analysis. In the absence of comparative information, the use of SMR01 data was identified as a means of validating admission cause. The parameters interrogated ensured that heart failure was identified as being a necessary requirement within the first four diagnostic categories and these events were then mapped to patients identified within the project database. Enhanced grouping of ICD-10 classification codes identified the following: l
Cardiac cause 68% (including MI, chest pain, angina, AF and HF)
l
Respiratory cause 12% (including COPD, pleural disease and pneumonia)
l
Renal failure cause 4%
l
Malignant-related cause 2% (including both primary and metastatic disease)
l
All other causes 14%
Despite being indicative of underlying heart failure, conditions such as oedema and dyspnoea were grouped to “Other” as there was no way of identifying whether or not these specific episodes were directly related to the patients’ pre-existing condition.
5.4.3 Hospital length of stay Sixty-nine live patients experienced a total of 1788 days in hospital ranging from one to 255 days (median=23). Fifty-seven deceased patients generated a total of 2870 days in hospital, ranging from one to 266 days (median=43) (Appendix 2, Tables 12, 13).
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Chapter 5 Results - Quantitative
5.5 Out of hours activity In an attempt to measure the levels of contact that these patients meeting group 3 criteria generated outside of the HFSNS, access to the ADASTRA database held by NHS Greater Glasgow & Clyde’s GP Out of Hours Service (OOH) enabled review of all deceased patients in order to give as complete a picture as possible on the contact levels with OOH for the year prior to death. Thirty-eight of the 57 deceased patients identified within the project (67%) had at least one contact with OOH ranging from one to 10 (median=2) and 81 of these contacts (89%) took place out with the regular hours of the HFSNS. (Appendix 2, Table 14) l
The majority of OOH contacts resulted in a home visit (51%)
l
A total of 29 admissions were made following OOH contact (32% of all outcomes)
l
Six patients had their deaths confirmed by OOH staff at a home visit (11%)
There were a vast range of diagnoses recorded but the main categories were: l
Respiratory 32%
l
Chest pain 15%
l
Medication issues 9%
Furthermore, of the additional 54 potential group 3 patients, 31 of them (57%) generated a total of 69 contacts with the OOH service. As these cases were unconfirmed within the project, review of their OOH activity was not carried out in any more detail.
5.6 Heart failure specialist nurse contact The main HFSNS contacts such as home visits and nurse-led clinic appointments are well-documented within ATHENA. However many of the “softer” contacts such as telephone calls to other healthcare professionals etc. are not routinely recorded and are therefore much less accurate. (Appendix 2, Tables 15a, 15b) l
A total of 885 home visits were made to 85 patients during the period of data collection, ranging from one to 30 (median=7).
l
A total of 337 nurse-led clinic appointments were carried out for 57 patients, ranging from one to 30 (median=3).
l
A total of 211 contacts with palliative care involvement were made for 38 patients, ranging from one to 21 (median=5).
Heart failure palliative care
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Chapter 5 Results - Quantitative
5.7 Contacts with other professional services The majority of heart failure patients will require increased support from a range of other healthcare professionals as their condition continues to deteriorate. Findings from the project show that such multidisciplinary activity is not well recorded at present. From the limited data available, we were able to identify that the three most common areas of additional input came from: l
District nurses 25%
l
Social work 24%
l
Occupational therapists 17%
It is a concern to acknowledge that only a quarter of the patients identified by the project were likely to have received additional support to enhance living with a disease that is already characterised by severe symptom burden and reduced functional decline.
5.8 Deaths During the data collection period a total of 278 deaths occurred within the HFSNS from a total active caseload of 1400 patients (20%), 57 of whom were identified within the project (45% of the observed cohort) (Appendix 2, Table 16). As previously stated, the project nurse and the clinical effectiveness co-ordinator reviewed all deaths that occurred during the project period and using group 3 criteria found a further potential 54 patients who could have been included in the project numbers. If we add these patient deaths to the 57 deaths that were identified within the project, this gives a total of 111 group 3 deaths, or 40% of the total service deaths. Additionally, if we add the 54 patients to the total of 126 group 3 patients that were included in the project this gives us 180-111 deaths = 62% of the group 3 patients died during the project term. The remaining 167 deaths in the HFSNS were patients who were excluded from the project for the following reasons: l
Patients still being optimised with evidence-based HF therapy (42%)
l
Sudden death (19%)
l
Death occurred for other reasons not associated with HF (14%)
5.8.1 Preferred place of death For those who died during the period of data collection, 11 (19%) had no preferred place of death recorded (Appendix 2, Table 17). Anecdotally, this figure is comparable with other specialities and for this reason has been highlighted as a priority by National Education for Scotland and The Living & Dying Well Action Plan (2009).
5.8.2 Actual place of death For those patients who did have a preferred place of death recorded, 18 of them (39%) passed away in the place of their choice (Appendix 2, Table 18).
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20
Chapter 6 Results – Qualitative 6.1 Carers understanding and concerns Although there is a dearth of supporting documentation around carers’ concerns, the following information was captured during patient and carer consultations. These consultations took place in a variety of clinic and home care settings and were carried out in a timely and sensitive manner. The key themes highlighted are further supported throughout the wider literature.21,23 l
Carer understanding of prognosis and disease progression varied from having a poor understanding to fully aware of condition and decline.
l
Carer concerns centred on their ability to cope day to day and being able to do the right thing for their loved one. Others felt unhappy about their loved one knowing the full extent of their deteriorating condition.
l
Challenging issues included their ability to cope and sustainability of coping mechanisms particularly within complex domestic circumstances, such as drugs and alcohol (Appendix 3).
6.2 Patients’ understanding and concerns The following key themes have been captured in relation to patients’ understanding of their illness and changing condition. Patient understanding of prognosis and disease progression varied from poor understanding (11%) to being fully aware of the potential decline associated with their heart failure condition (21%) (Appendix 4). Patients concerns in relation to their condition changing centred on reduced function and mobility, loss of independence, relationships and appetite. Increased symptom burden included dyspnoea, fatigue, weakness and oedema. Other concerns included loss of confidence, increasing dependence on others for support, worry about the effect their dependency would have on their caregivers and becoming housebound or requiring hospital admission. Challenging issues ranged from; being the main carer for their spouse, managing stairs, reduced function, ability to cope with everyday activities, acceptance of failing condition and associated symptom burden particularly increasing dyspnoea, insomnia and oedema. Equally challenging was accepting additional support and the loss of spontaneity such as going on holiday etc (Appendix 4). These themes are endorsed in the wider literature.18,21
6.3 Joint working One of the key elements of this project has been the opportunity for the HFSNS to work jointly with the project palliative care clinical nurse specialist and also wider collaborative working with other health, social and palliative care services across different care settings within NHS GG&C. Using a variety of evaluation methods such as staff questionnaires, reflective narratives and professional accounts (Appendix 5), the following recurring themes have emerged as potential key areas that require additional and ongoing support:
Heart failure palliative care
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Chapter 6 Results – Qualitative
l
Advanced communication
l
Different ethos of care
l
Time and competing priorities
l
Education and training gaps
l
Informal transfer of knowledge and skills
The palliative care clinical nurse specialist has been seconded (0.3wte) for the last 12 months of the project term, and although uptake of joint patient visits was initially slow, this resource has now proved invaluable for supporting the HFSNS and for the informal transfer of knowledge and skills between two specialities (Appendix 6).
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Chapter 7 Discussion
7.1 Main findings 1. Can a supportive palliative care approach to care be encompassed within the existing HFSNs role? Although some HFSNs across NHS GG&C demonstrated that it is achievable to integrate a supportive and palliative care approach effectively into the existing HFSN role, others have found this to be more difficult. The supplementary information that was required for the database focused more on the person’s experience of living with the disease and less on the actual disease itself, resulting in longer patient and carer consultations. This naturally caused some concerns amongst the HFSN team particularly in relation to the additional time required for the patient and a carer consultation, that very often on average was one to 1.5 hours as identified in a time log (Appendix 5). This is compared to existing heart failure patient clinic consultations of 15 minutes and approximately 20 to 30 minutes for a regular home visit consultation. The ensuing communication with wider health and social care professionals is also initially very time-consuming (Appendix 5). In addition, as highlighted in the staff questionnaire and the learning needs assessment focus group carried out by the NHS GG&C lead nurse for non-malignant disease and the palliative care nurse consultant (Appendix 5), specific training and educational needs were identified by the HFSNS. One of the key elements of this project has been the opportunity for the HFSNS to work jointly with the project palliative care clinical nurse specialist and also wider collaborative working with other health, social and palliative care services across different care settings within NHS GG&C. If the HFSNS is to encompass a supportive palliative care approach into the existing role, greater collaborative working with key professionals across all care settings needs to be encouraged. Although this may initially be time consuming and impact on the HFSNs time, it should in the longer term, increase both confidence and efficiency of the HFSNs interactions with patients as they improve their skills and experience.
2. Can patients be identified earlier despite an uncertain and unpredictable disease trajectory? Prior to this project, patients were often only identified as nearing the end of life when they were in the last few days or hours of life. The project has demonstrated that using the specific inclusion criterion, it is possible to identify a significant percentage of patients who are months, rather than days away from death. What it also highlights however, is that a significant number of patients who did not meet the inclusion criteria died outside the project without their supportive and palliative care needs being met. Furthermore, although a small number of patients did not require hospitalisation in the 12 months prior to their death, a significant number of patients did. It is crucial, therefore, that hospital admission/ readmission is considered, along with an increased need for home visits as a prognostic indicator particularly if the patients are being managed by a HFSN. More work to develop more robust and accurate inclusion criteria and improved HFSN skills in patient identification would be welcome.
Heart failure palliative care
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Chapter 7 Discussion
3. Are the supportive palliative care needs of patients and their care givers being met within the existing HFSNS? The project clearly highlights that unfortunately many patients within the HFSNS continue to live and die with their supportive and palliative care needs being unmet. Accurate identification of patients who are approaching the end of life remains challenging, and further work on biometric and clinician-assessed prognostic indicators that would help the HFSNs accurately identify the appropriate patients would be welcome. The holistic approach that encompasses physical, social, spiritual and psychological aspects of care is largely absent from the current HFSNs assessment. For reasons already cited above, more emphasis is placed on the heart failure symptoms and pharmacological regimes. It may be, that adapting the assessment process to include a more holistic assessment would improve earlier identification of patients and also help increase the skills and confidence of the HFSNs in engaging patients in discussions about their priorities for care. Providing a more holistic approach to care will inevitably take more time and this poses particular challenges for an already heavily-committed service. The HFSNs currently work within relatively short consultation times (15-20 mins) and it is difficult to engage in the often lengthy and complex discussions about care toward the end of life without an increase in visit length. It may be, though, that by incorporating some of the principles of a supportive palliative care approach into the standard assessment, the additional time requirement will be distributed more evenly over the patient’s time in the HFSNS and avoid the significant peaks in time commitment that were required during this project.
Project achievements Data collection: The data collection process that has taken place over the seven HFSNS sites has, in general, been successful and it is hoped that key areas highlighted will be used to underpin enhanced clinical practice and the undertaking of future research proposals. Joint working: One of the key elements of this project has been the opportunity for the HFSNS to work jointly with the project palliative care clinical nurse specialist and also wider collaborative working with other health, social and palliative care services across different care settings within NHS GG&C. This informal transfer of knowledge and skills has increased awareness of the extensive needs of people living with heart failure and has proved invaluable to a number of different service providers and in particular the HFSNS. Further evaluation on the key aspects of joint working will follow in a separate report. The framework to support the HFSNS to identify high risk patients meeting the criteria of group 3 is now being used routinely as a trigger to have more formal discussions with the key clinician. The outcomes of these discussions are used to inform the future goals of care in relation to either further cardiological treatment or continuation of a supportive/palliative ethos of care that realistically incorporates the priorities of care for the people living with advancing disease. 19 Anticipatory care planning (ACP) is a key element of the Living and Dying Well Action Plan (2008).The ACP process involves ongoing discussion between the patient and their care providers and focuses on their future care preferences. This sounds ideal in theory, however from the experience of the project this has been very difficult to facilitate in clinical practice without additional allocation of time/resources. To date, 17 ACPs have been implemented across NHS GG&C with varying degrees of success. Evaluation of the ACPs and their effectiveness is not within the remit of this project, however the following observations have been noted. Hospital admission could not always be avoided; but knowledge that the patient had advancing disease and did not wish to be hospitalised meant that this was only ever considered as a last Heart failure palliative care
24
Chapter 7 Discussion
resort. There is potential to reduce the number of hospital bed days with the support of an ACP and this area in itself merits more robust exploration. Enhanced communication across different care settings and in particular with GPs and the OOH service was achieved. And finally, there was a general sense of relief/ peace from families who felt informed and knew what to reasonably expect from their loved one but more importantly the health and social care professionals caring for them. Supportive palliative care clinic: In response to many of the difficulties cited throughout this report, it was agreed that a six month supportive palliative care clinic pilot would be established at one of the HFSN sites. The purpose of this clinic was to review the high risk patients meeting group 3 criteria identified by the HFSN. Following a comprehensive assessment by the cardiologist and HFPCSN the patient and their caregiver’s needs and preferences for care are then facilitated by the HFSN in collaboration with other multi-professionals. This pilot was two-fold primarily to provide improved care for persons living with advancing disease and secondly to provide an opportunity for the HFSNs to use as an educational resource to increase their knowledge and communication skills by observing and participating in a different ethos of care. Multi-professional working: A second pilot is operating at one of the other HFSNS sites and includes a weekly multi-professional team meeting, led by the lead cardiologist and palliative care consultant. The HFSNs identify high risk patients meeting group 3 criteria who are to be discussed at this meeting and their preferences of care are identified and facilitated accordingly. The HFSN remains the key worker throughout. Patients and their caregivers who have agreed that the emphasis of care should be more palliative, are given the opportunity to attend a six week programme offered by the local hospice. This programme includes; discussions around changing condition, symptom management, social, psychological and spiritual care needs, and a representative from all of these specialities attends at least one session. Additional follow-up is tailored to suit individual patient and caregivers needs and may include alternative therapies to improve both patient and caregivers quality of life. This multi-professional working encourages an informal transfer of knowledge and skills. Education and training has been highlighted as a key area for development throughout this project and in particular the need for further training in communication. Following a successful bid application (Appendix 6), £10,000 was awarded to the NHS GG&C Cardiology Directorate to enable 30 healthcare professionals to attend a two day advanced communication course and a further 10 healthcare professionals to attend a dignity and respect training day. Evaluation following attendance at these days will inform future training events. An educational module has been specifically developed at Glasgow Caledonian University by the project nurse in partnership with cardiology and palliative care professionals from across NHS GG&C to support all professionals with the management of persons living with advancing heart failure disease. The module is available at both degree and Masters level study and is delivered twice per year. In collaboration with all the hospices across NHS GG&C it has been agreed that the HFSNS will be invited to attend and participate in the regular study events that are currently offered to the palliative care professionals. It is hoped that this will sustain knowledge acquisition and long term collaborative working. The project nurse has devoted much resource to networking, learning and education across Glasgow, Scotland and the UK. Although this has taken many forms it has mainly centred on the delivery of presentations and discussion forums totalling approximately 145 over the three year project term.
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Chapter 7 Discussion
7.2 Implications Key recommendations for practice The NHS Quality Improvement Scotland Clinical Standards for Heart Disease was launched April 2010. Standard Statement 18 Patients with heart disease who remain symptomatic despite optimal treatment have access to supportive and palliative care according to their needs. The essential criteria highlights that patients should be identified, assessed and an individual management plan covering all aspects of care, including advanced planning around device deactivation, should be created, documented and communicated to all relevant services including the OOH. This plan is to be reviewed quarterly. For this standard to be met within the HFSNS, the following key recommendations need to be considered and implemented at each of the HFSNS sites. Recommendation 1: Holistic assessment using evidence based assessment tools that encompass social, physical, spiritual and psychological aspects of care should routinely be employed and documented for each patient within the HFSNS. The project highlighted that it is conceivable to identify patients who could benefit from a heart failure palliative care approach using the inclusion criteria. It equally demonstrated that patients who did not meet the inclusion criteria, and died whilst still being optimised, could also have benefited from this approach to care. Recommendation 2: Proactive identification of group 3 patients who meet the project criteria within the defined heart failure caseload should continue and the inclusion of significant conversations to identify priorities of care should become integral to the HFSN role. Recommendation 3: The HFSN should be the key worker/co-ordinator for high risk patients meeting group 3 criteria particularly as there will be a greater need for multi-professional working and coordination of care as the people living with heart failure condition and circumstances change. Recommendation 4: Information gathering should include disease specific details and supplementary information around the holistic assessment, significant conversation, priorities of care and person specific information in relation to patient and carer concerns. These additional fields are already being considered for inclusion in the developing heart failure database. This change will support the required documentation and communication that is essential for the creation of anticipatory care planning. Recommendation 5: Continued multi-professional working across all care settings should be supported and facilitated wherever possible for all patients within the HFSNS. Recommendation 6: Although patients meeting group 3 criteria may be considered at higher risk of dying with unmet needs, consideration must also be given to all heart failure patients who are potentially at risk of dying whilst still being optimised on evidence based heart failure therapy, or who may die suddenly. For this reason, all heart failure patients and their care givers deserve a patient centred approach to care that encompasses assessment of their needs and is responsive to condition change and/or social circumstances as they develop. Recommendation 7: An ongoing system of education and training to support the HFSNS and palliative care professionals across care settings needs to continue to ensure that the enhanced knowledge, acquisition of skills and collaborative working that is already taking place is regularly encompassed within the HFSNs role. Further robust research addressing training needs of the HFSNs and the wider health and social care professionals is required. Heart failure palliative care
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Chapter 7 Discussion
Recommendation 8: Systems that encourage comprehensive assessment and open and honest discussions are required to be implemented. Particularly, within the acute care settings to ensure that inappropriate goals of care and subsequent prolonged hospital admissions as highlighted in this project are avoided for this patient group.
7.3 Future direction This project aimed to determine whether patients with heart failure requiring supportive and palliative care could be identified and their needs met within the current HFSNS resources. A systematic approach was developed and implemented to identify patients and meet their care needs. The HFSNs introduced the lessons and processes from palliative care into their practice. Although extending palliative care to non-malignant conditions features significantly on the political health and social care agenda, the evidence as to how we deliver this change in clinical practice is still in its early stages. However, there has been a very positive shift in attitude across all care settings over the last 12 months. It is for this reason that optimism and enthusiasm prevail. The findings within this report support this change and although the philosophy of cure still pervades within heart failure generally. It is apparent that advances are being made, albeit slowly, to understand and appreciate that a different ethos of care which recognises the person’s experience of living with advancing disease, is as important as the measurable clinical outcomes themselves. Time will always be our enemy and additional finance and resources is not always the answer. If we can fully embrace the concept of holistic assessment and multi-professional working, then we can begin to focus on a person centred approach to care instead of the disease specific approach currently utilised. This project provides the foundations for further quantitative and qualitative research in this area. The small sample size recruited is likely to be an underestimate of the actual number of patients who could potentially fulfil the inclusion criteria. This number, however, will not become evident until healthcare professionals who are currently working in heart failure develop the confidence, skills and knowledge to implement an ethos of care that encompasses the wider impact that heart failure has on the people living with the condition. Further research on prognostic indicators is also required.
Heart failure palliative care
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Appendix 1 Framework Appendix 1a HFSNS Caseload Patient Classification Tool
Group 1
Group 2
Group 3
Optimised
Symptomatic during optimisation process
Optimised
Asymptomatic
Progressively symptomatic Symptom palliation
Discharged
Comprehensive assessment Optimal/target doses of heart failure therapy
Asymptomatic
Symptomatic
All patients meeting the high risk group 3 criteria were identified by the HFSNS using the following: l
Regarded by the heart failure specialist nurse service (HFSNS) to be on optimal/target doses of evidence based heart failure therapy as per the local heart failure medical therapy guidelines and remained NYHA III/IV.
l
Had progressive symptoms that - were distressing and/or debilitating.
l
Required increased monitoring by the HFSNS e.g. home visits/clinic contact and/or a hospital admission.
l
Required frequent medication changes in response to difficult/resistant symptoms and/or change in their condition.
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Appendix 1 Framework
Appendix 1b Group 3 Patient Patient is on optimal/target dose of heart failure therapy Yes NYHA III/IV Symptomatic Increased monitoring/hospital admission Requiring regular medication adjustment in response to debilitating/distressing symptoms Yes Comprehensive assessment, discussion and documentation Yes Clarity on treatment and future goals of care Yes
Continue with a supportive palliative care approach encompassing end of life care planning.
Continue with a supportive palliative care approach encompassing additional investigations and treatment to optimise cardiological management.
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Appendix 1 Framework
Appendix 1c Comprehensive assessment discussion triggers Stage 1 Patient Treatment Status Assessment
Yes (4) No (4)
Date
Yes (4) No (4)
Date
Yes (4) No (4)
Date
Patient Optimised NYHA Class III/IV Unstable for > 3 months ECG: QRS Prolongation (> 120ms? > 150ms) Hb Further Investigation/Intervention Indicated Prognosis Poor Palliative Care and Comfort Measures Only Stage 2 Advanced Planning Patient Treatment Status Clarified/Documented Effective CPR: Is it likely to be successful DNAR Status Clarified/Documented Device Insitu Type of Device: ICD/CRT/CRT-D Device Deactivation Planned Device Deactivated Reason for device not being deactivated Stage 3 Priorities of Care Preferred Place of Care Symptom Management Considerations Medication Review Social Care Review (Care/Benefits DS 1500 etc) Carer Review Patient and Carer Aware of DNAR Status Gold Standards Framework Register Fast Track Summary for (A&E) Dept/OOhrs Liverpool Care Pathway (as appropriately indicated) This comprehensive discussion trigger document can be used to support professionals to generate anticipatory care plans.
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Appendix 1 Framework
Appendix 1d Anticipatory management plan template Recent clinical summary Since October 2008, Mr Bloggs has had three separate admissions to hospital with symptoms of deteriorating heart failure. Sadly since these admissions his general condition is relatively poor and he continues to have refractory symptoms of dyspnoea and peripheral oedema affecting both legs to mid calf level. In response to this progressive deterioration, the following care priorities have been identified and agreed by all key clinicians involved in Mr Bloggs management. Cardiological Assessment - it has been agreed that Mr Bloggs is on optimal cardiac therapy and there are no indications for further therapeutic interventions to improve outcomes. Resuscitation Status - following discussion it has been agreed cardio-pulmonary resuscitation would not be effective and for this reason should not be initiated. Following careful and sensitive discussion Mr and Mrs Bloggs are fully aware of this decision. Priorities of Care - Preferred place of care Mr Bloggs has expressed a wish that every effo rt should be made to manage and support his care at home however in the event that his condition becomes too difficult to manage at home he has stated that he would prefer a short hospital admission. Hospice directed care has been explored and declined on this occasion. Symptom Considerations: In the event of Mr Bloggs developing symptoms of dyspnoea please consider the following treatment strategies
Accident Emergency Fast Track If Mr Bloggs requires admission to the hospital a fast track alert has been placed in accident emergency to avoid unnecessary waiting time and inappropriate investigations. This fast track process should ensure rapid assessment, appropriate treatment and transfer to a suitable area within the hospital. The aim of this should always be to ensure a short hospital stay.
Emergency Contact Telephone Numbers: District Nursing Team Hospice HFSNS Out of Hours Emergency Care Service… The above anticipatory management plan has been agreed with all key clinicians listed below: Dr xxxxx Dr xxxxx Sr xxxxx
(Consultant Cardiologist) (General Practitioner) (Heart Failure Specialist Nurse)
A copy of this anticipatory management plan has been given to all of the above including Mr Bloggs, Out Of Hours Emergency Care Services and the District Nursing Service.
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Appendix 1 Framework
Appendix 1e Fast Track Summary Report For Out Of Hours - End of Life Heart Failure Should this patient present to (A & E) with end stage heart failure symptoms please assess and manage appropriately and ensure that home discharge is always considered in the first instance to avoid inappropriate hospital admission. Decision Status: Palliative Care and Comfort Measures Only Decision Rationale: End stage heart failure with poor prognosis Date of Decision: Professionals Responsible for Decision: Professional Details Contact Details: GP or HFLN or Out of Hrs (name & contact number) Consultant Cardiologist Care of Elderly Consultant District Nursing Team Palliative Care Team Primary Treatment Plan Contact HF CNS - If office hours available via mobile Patient not for invasive or investigative measures End of life discussion has taken place with patient and family Full social support is in place for this patient If there are clinical signs of fluid retention administer: Consider IV frusemide Consider immediate release morphine 4 hourly Increase dose depending on response and side effects If unable to take drugs orally, use SC route or IV route as indicated Oxygen therapy if indicated If there are no obvious signs of fluid retention but patient is dyspnoeic and anxious consider: Opiate and diuretic as above Lorazepam 0.5 mg sublingually can help in acute situation Diazepam 2 mg orally and titrate depending on response
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Appendix 2 Tables Table 1 Sex
H1 n=35
H2 n=13
H3 n=25
H4 n=10
H5 n=16
H6 n=17
H7 n=10
Total n=126
Female
5
3
8
4
4
8
1
33 (26%)
Male
30
10
17
6
12
9
9
93 (74%)
Age
H1 n=35
H2 n=13
H3 n=25
H4 n=10
H5 n=16
H6 n=17
H7 n=10
Total n=126
50 - 59
3
0
0
0
3
0
1
7 (6%)
60 - 69
9
1
5
2
1
3
1
22 (17%)
70 - 79
18
4
13
6
9
6
5
61 (48%)
80 - 89
4
7
6
0
3
6
3
29 (23%)
90 and over 1
0
0
1
0
2
0
4 (3%)
0
1
1
1
0
0
0
3 (2%)
DepCat
H1 n=35
H2 n=13
H3 n=25
H4 n=10
H5 n=16
H6 n=17
H7 n=10
Total n=126
High
24
3
5
5
5
5
3
50 (40%)
Low
0
1
3
1
7
4
5
21 (17%)
Medium
11
9
17
4
4
8
2
55 (43%)
Ethnicity
H1 n=35
H2 n=13
H3 n=25
H4 n=10
H5 n=16
H6 n=17
H7 n=10
Total n=126
White
34
13
25
9
16
15
10
122 (97%)
Asian
1
-
-
1
-
2
-
4 (3%)
Lives alone
H1 n=35
H2 n=13
H3 n=25
H4 n=10
H5 n=16
H6 n=17
H7 n=10
Total n=126
No
30
8
19
6
11
13
6
93 (74%)
Yes
5
5
6
4
5
4
4
33 (26%)
Table 2
Under 50 Table 3
Table 4
Table 5
Heart failure palliative care
33
Appendix 2 Tables
Table 6 Main carer
H1 n=35
H2 n=13
H3 n=25
H4 n=10
H5 n=16
H6 n=17
H7 n=10
Total n=126
Child
2
4
4
4
1
5
0
20 (16%)
Friend
0
2
0
1
0
0
2
5 (4%)
Not recorded
10
0
5
0
3
2
0
20 (16%)
Other
0
0
2
1
1
2
3
9 (7%)
Sibling
0
0
0
1
1
0
0
2 (2%)
Spouse
23
6
14
3
10
8
5
69 (55%)
Stepfather
0
1
0
0
0
0
0
1 (
