Abstract
EXECUTIVE SUMMARY
The National Institute for Clinical Excellence (NICE: 2004, p.20) offer a comprehensive definition of palliative care:
“Palliative care is the active holistic care of people with advanced
progressive illness. Management of pain and other symptoms and
provision of psychological, social and spiritual support is paramount.
The goal of palliative care is achievement of the best quality of life for
patients and their families”
Addressing these issues requires input, support and collaboration from a range of sources including specialist teams dedicated to palliative and end of life care. There has been a growing call for the widening of palliative care and end of life services to provide support for patients with non-malignant conditions, with more recent government policy directing palliative care development to respond to a greater range of conditions (National Council for Palliative Care, NCPC: 2014). Baker, Leak, Ritchie, Lee and Fielding (2012) argue that with the growing population and ageing population, demand on palliative care services will only increase in the future. It is argued that as the population increases the level of chronic and complex illnesses such as cardiorespiratory disease, dementia and cancer, will increase proportionately to this placing further demand for palliative care provision on the health service as it attempts to respond to patient need at end of life (Murray, Kendall, Boyd & Sheikh,2005; Shipman et al., 2008).
The literature states that the role independent hospices play in addressing growing need is essential for the sustainability of quality palliative care, as they are often based at the heart of communities providing a unique opportunity for them to act as a hub for palliative care provisions including outpatient and day care services (Hospice UK, 2013). Day Hospice, sometimes referred to as Day Care, is a service that patients with palliative care or end of life needs can attend for a day, or part of a day, on a regular basis e.g.: weekly. Day hospices provide a range of services including specialist palliative care assessment, input and follow up by other healthcare professionals, various therapeutic activities, respite for carers, routine nursing and medical care, as well as providing social interaction.
The Foyle Hospice and the Integrated Care Partnership identified clinical priorities for End of Life care in Western Trust area. They proposed the pilot of an Enhanced Day Hospice (EDH) offering at the Foyle Hospice to cater for patients with palliative care needs in the northern sector of the WHSCT (Hospice catchment area). The year-long EDH pilot, which concluded in March 2016, involved the appointment of a dedicated medical officer who would provide specialist palliative medical input at the day hospice and a newly appointed staff nurse to support the medical officer in a clinic setting. This current report was commissioned in order to evaluate the EDH pilot, to explore impact in the local context and generate suggestions for service development.
Methodology and Findings
In order to inform this report data was gathered from a range of key stakeholders regarding the pilot and its implementation. Quantitative data, held on the iCare database compiled by the Foyle Hospice, for the period November 2015 to February 2016, was analysed. Further quantitative data was gathered from patients and carers using a range of questionnaires. Across the period 37 patients, aged 25-85 years, attended the EDH. Twenty-eight patients had a cancer diagnosis, with the remaining 9 having a non-malignant life limiting condition. Across this time 37 new patient appointments and 136 review appointments were facilitated at the EDH clinic. Twenty patients who attended the EDH across these months, and who had been seen at the clinic, died (9 died at home; 9 in the hospice inpatient unit; 2 in hospital).
Patient satisfaction scores indicated generally high levels of satisfaction with the EDH provision. Results also indicate reduced use of other health services including GP, A&E, and out of hours provision, among those attending EDH. Among carers, satisfaction associated with various aspects of EDH was generally high. Carers provided information on the value of the EDH for patients indicating the key benefits were associated with socialising, access to medical assistance, therapies/ treatments and mood improvement. They also saw benefits for themselves (carers) in the form of having a break from caring, free time, peace of mind that their loved one was cared for, and access to the staff who had “time to listen”.
Views of key stakeholders regarding the EDH were gathered. The feedback from all stakeholders regarding the EDH was generally positive in nature. There was clarity about the role of the new wellbeing clinic as part of the EDH, and the associated aims and objectives of the new provision. Respondents also acknowledged a change in the profile of the traditional palliative care patient, with an increase in the number of patients attending EDH, with non-malignant conditions.
Clinic staff outline a clear benefit of the EDH provision as it offers patients and their families a safe environment in which they are supported through difficult discussions and informed to assist the difficult decision making process around end of life planning. All staff point to the impact the EDH has had for families as they plan for what lies ahead, with a noted fall in the number of patients who have died in hospital
since the EDH has been in operation.
Carers reported that the EDH goes beyond simply addressing the needs of the patient, extending to the carer also, ensuring the carer is supported in order to maintain their ability to continue to care effectively for the patient. The carers also underlined the EDH offered benefits for them, allowing them to feel supported with the burden of care shared for a time.
When addressing the benefits of the self-care clinic directly, the carers were clear that it was beneficial for them to be part of the conversation between the doctor, nurse and the patient. They also appreciated the fact that they had access to that support if they had any concerns or questions. Carers reported they valued the less formal nature of the day hospice, feeling more at ease and less pressured when discussing difficult topics or making decisions about the care of their loved one. Their experiences of the day hospice differed from those with other healthcare professionals.There have also been reported benefits for the Day Hospice staff, with the integration of the clinic provision, which has been seen as a positive for patients and professionals alike. Staff report that as they all come from a palliative care background they feel that the communication is easier, with clear integration of older and newer provisions.
Conclusion
The feedback on the EDH was overwhelmingly positive. It may be important to note that the EDH offers a model of care that appears to effectively increase patient confidence, promote improved quality of life, respond to carer needs and deliver benefits for associated health professionals.
There has been a fall in the number of patients who have died in hospital, with two out of twenty patient deaths occurring in a hospital setting. Advance and anticipatory care planning discussions in the clinic have allowed patients to share their wishes for care and empowered them to make decisions that should allow a more positive experience for the patient and family. There is evidence that attendance at the EDH has reduced patient demand on other health services such as out of hours GP and A&E.
The benefits for the patients and carers are clearly highlighted, with high levels of satisfaction expressed by both groupings. The access to medical assessment on site, the expertise of the staff, the social aspect of care, access to therapies/ treatments and the connected provision of care were among the important benefits heralded by patients. The EDH patients and their carers do not see the self-care clinic as a separate service, rather a natural addition to existing provision.
Good working relationships have been developed between the day hospice nursing team and self-care and wellbeing clinic staff, with both appearing to view themselves as part of a cohesive model of care for patients with palliative needs. The clinic has been embraced by the day hospice and accordingly the alignment of these two services has indeed created an enhanced provision for patients and families. Relationships are beginning to build with other allied professionals and community supports, with awareness increasing slowly as they interact with the enhanced day hospice. Referrals to the clinic appear to be increasing, with various external sources such as GPs, home care and the hospital directing patients to the provision, alongside those attending for assessment from the day hospice.
Challenges do exist in relation to the provision, the most striking of which is the uncertainty that exists around the continuation of the provision beyond the pilot phase. It is apparent that the loss of this service would have implications for patients and also possibly for the day hospice. However, beyond this, the lack of clarity on sustained provision may have also impacted on the full potential of the clinic being realised as there has been a lack of promotion and a feeling that expectations of patients should not be raised about a provision that may vanish as the resourcing for it dries up. The changing profile of patients accessing the enhanced day hospice is also a potential challenge, with an increasing number of patients having chronic, degenerative conditions that will place more demands on the team as they deteriorate.
The suggestions for service development, listed within the report, are driven by the
feedback from all key stakeholders and drawn together in a way that reflects the best associated outcomes for all.
The National Institute for Clinical Excellence (NICE: 2004, p.20) offer a comprehensive definition of palliative care:
“Palliative care is the active holistic care of people with advanced
progressive illness. Management of pain and other symptoms and
provision of psychological, social and spiritual support is paramount.
The goal of palliative care is achievement of the best quality of life for
patients and their families”
Addressing these issues requires input, support and collaboration from a range of sources including specialist teams dedicated to palliative and end of life care. There has been a growing call for the widening of palliative care and end of life services to provide support for patients with non-malignant conditions, with more recent government policy directing palliative care development to respond to a greater range of conditions (National Council for Palliative Care, NCPC: 2014). Baker, Leak, Ritchie, Lee and Fielding (2012) argue that with the growing population and ageing population, demand on palliative care services will only increase in the future. It is argued that as the population increases the level of chronic and complex illnesses such as cardiorespiratory disease, dementia and cancer, will increase proportionately to this placing further demand for palliative care provision on the health service as it attempts to respond to patient need at end of life (Murray, Kendall, Boyd & Sheikh,2005; Shipman et al., 2008).
The literature states that the role independent hospices play in addressing growing need is essential for the sustainability of quality palliative care, as they are often based at the heart of communities providing a unique opportunity for them to act as a hub for palliative care provisions including outpatient and day care services (Hospice UK, 2013). Day Hospice, sometimes referred to as Day Care, is a service that patients with palliative care or end of life needs can attend for a day, or part of a day, on a regular basis e.g.: weekly. Day hospices provide a range of services including specialist palliative care assessment, input and follow up by other healthcare professionals, various therapeutic activities, respite for carers, routine nursing and medical care, as well as providing social interaction.
The Foyle Hospice and the Integrated Care Partnership identified clinical priorities for End of Life care in Western Trust area. They proposed the pilot of an Enhanced Day Hospice (EDH) offering at the Foyle Hospice to cater for patients with palliative care needs in the northern sector of the WHSCT (Hospice catchment area). The year-long EDH pilot, which concluded in March 2016, involved the appointment of a dedicated medical officer who would provide specialist palliative medical input at the day hospice and a newly appointed staff nurse to support the medical officer in a clinic setting. This current report was commissioned in order to evaluate the EDH pilot, to explore impact in the local context and generate suggestions for service development.
Methodology and Findings
In order to inform this report data was gathered from a range of key stakeholders regarding the pilot and its implementation. Quantitative data, held on the iCare database compiled by the Foyle Hospice, for the period November 2015 to February 2016, was analysed. Further quantitative data was gathered from patients and carers using a range of questionnaires. Across the period 37 patients, aged 25-85 years, attended the EDH. Twenty-eight patients had a cancer diagnosis, with the remaining 9 having a non-malignant life limiting condition. Across this time 37 new patient appointments and 136 review appointments were facilitated at the EDH clinic. Twenty patients who attended the EDH across these months, and who had been seen at the clinic, died (9 died at home; 9 in the hospice inpatient unit; 2 in hospital).
Patient satisfaction scores indicated generally high levels of satisfaction with the EDH provision. Results also indicate reduced use of other health services including GP, A&E, and out of hours provision, among those attending EDH. Among carers, satisfaction associated with various aspects of EDH was generally high. Carers provided information on the value of the EDH for patients indicating the key benefits were associated with socialising, access to medical assistance, therapies/ treatments and mood improvement. They also saw benefits for themselves (carers) in the form of having a break from caring, free time, peace of mind that their loved one was cared for, and access to the staff who had “time to listen”.
Views of key stakeholders regarding the EDH were gathered. The feedback from all stakeholders regarding the EDH was generally positive in nature. There was clarity about the role of the new wellbeing clinic as part of the EDH, and the associated aims and objectives of the new provision. Respondents also acknowledged a change in the profile of the traditional palliative care patient, with an increase in the number of patients attending EDH, with non-malignant conditions.
Clinic staff outline a clear benefit of the EDH provision as it offers patients and their families a safe environment in which they are supported through difficult discussions and informed to assist the difficult decision making process around end of life planning. All staff point to the impact the EDH has had for families as they plan for what lies ahead, with a noted fall in the number of patients who have died in hospital
since the EDH has been in operation.
Carers reported that the EDH goes beyond simply addressing the needs of the patient, extending to the carer also, ensuring the carer is supported in order to maintain their ability to continue to care effectively for the patient. The carers also underlined the EDH offered benefits for them, allowing them to feel supported with the burden of care shared for a time.
When addressing the benefits of the self-care clinic directly, the carers were clear that it was beneficial for them to be part of the conversation between the doctor, nurse and the patient. They also appreciated the fact that they had access to that support if they had any concerns or questions. Carers reported they valued the less formal nature of the day hospice, feeling more at ease and less pressured when discussing difficult topics or making decisions about the care of their loved one. Their experiences of the day hospice differed from those with other healthcare professionals.There have also been reported benefits for the Day Hospice staff, with the integration of the clinic provision, which has been seen as a positive for patients and professionals alike. Staff report that as they all come from a palliative care background they feel that the communication is easier, with clear integration of older and newer provisions.
Conclusion
The feedback on the EDH was overwhelmingly positive. It may be important to note that the EDH offers a model of care that appears to effectively increase patient confidence, promote improved quality of life, respond to carer needs and deliver benefits for associated health professionals.
There has been a fall in the number of patients who have died in hospital, with two out of twenty patient deaths occurring in a hospital setting. Advance and anticipatory care planning discussions in the clinic have allowed patients to share their wishes for care and empowered them to make decisions that should allow a more positive experience for the patient and family. There is evidence that attendance at the EDH has reduced patient demand on other health services such as out of hours GP and A&E.
The benefits for the patients and carers are clearly highlighted, with high levels of satisfaction expressed by both groupings. The access to medical assessment on site, the expertise of the staff, the social aspect of care, access to therapies/ treatments and the connected provision of care were among the important benefits heralded by patients. The EDH patients and their carers do not see the self-care clinic as a separate service, rather a natural addition to existing provision.
Good working relationships have been developed between the day hospice nursing team and self-care and wellbeing clinic staff, with both appearing to view themselves as part of a cohesive model of care for patients with palliative needs. The clinic has been embraced by the day hospice and accordingly the alignment of these two services has indeed created an enhanced provision for patients and families. Relationships are beginning to build with other allied professionals and community supports, with awareness increasing slowly as they interact with the enhanced day hospice. Referrals to the clinic appear to be increasing, with various external sources such as GPs, home care and the hospital directing patients to the provision, alongside those attending for assessment from the day hospice.
Challenges do exist in relation to the provision, the most striking of which is the uncertainty that exists around the continuation of the provision beyond the pilot phase. It is apparent that the loss of this service would have implications for patients and also possibly for the day hospice. However, beyond this, the lack of clarity on sustained provision may have also impacted on the full potential of the clinic being realised as there has been a lack of promotion and a feeling that expectations of patients should not be raised about a provision that may vanish as the resourcing for it dries up. The changing profile of patients accessing the enhanced day hospice is also a potential challenge, with an increasing number of patients having chronic, degenerative conditions that will place more demands on the team as they deteriorate.
The suggestions for service development, listed within the report, are driven by the
feedback from all key stakeholders and drawn together in a way that reflects the best associated outcomes for all.
| Original language | English |
|---|---|
| Commissioning body | Integrated Care Partnerships (Health & Social Care) |
| Publication status | Published - 2016 |
