Investigation report: Variations in the delivery of palliative care services to adults

About Dermot

Dermot was a fit, healthy and youthful 77 year old. He played tennis twice a week and was very active in his local community doing voluntary work with older people with disabilities. Dermot had been married for 52 years, and had three brothers who lived overseas and one sister. When Dermot got the diagnosis of his rare sarcoma he faced the challenge with characteristic courage and pragmatism. He did everything he could to get the best care he needed. He looked forward to months, even years, of healthy life after recovery from surgery in May 2020.

From Dermot’s family

We welcome HSIB’s investigation to support improvements in palliative and end of life care services across the country. The report highlights some of the difficulties faced by Dermot and his family during the palliative care for his sarcoma but is not able to fully reflect all the events and factors that contributed to his and his family’s distress, nor the difficulties in meeting Dermot’s needs and his and his family’s expectations.

Dermot and his wife felt alone on their journey through his palliative care, particularly given his already rapidly deteriorating state of physical health and mental anguish at the point when palliative care services became involved. Exploration of Dermot’s diagnosis of sarcoma, its recurrence, extensive metastases, and staff awareness of the condition were out of scope of HSIB’s investigation. The family are separately exploring how the rare and aggressive nature of the cancer complicated Dermot’s palliative care in current work with Sarcoma UK.

Dermot’s family did not feel there was continuity throughout his care, and this is highlighted in the investigation. Dermot did not have a “good death” despite the best efforts of services working with limited resources. From the family’s experience and insight, this was due to issues relating to expertise and knowledge of how to assess and manage Dermot’s illness in his last weeks of life. It is hoped that the HSIB safety recommendation to build specialist workforce capacity and the action for integrated care boards will support staff to have the required knowledge and skills to look after patients with specialist palliative care needs, like Dermot, with conditions such as advanced metastatic sarcoma.

The family hope that the safety recommendations made by this investigation will play some part in the needed improvements in palliative and end of life care services to help provide effective holistic care in order that others do not have the same experience as Dermot.

Dermot’s family (April 2023)

This report is intended for health and care organisations, policymakers and the public to help improve the experience of care of people and their families towards the end of a person’s life. For readers less familiar with this area, terms are explained throughout.

There is variation in the terms used in palliative and end of life care (PEoLC). For consistency, this report uses PEoLC as an umbrella term which encompasses all types of PEoLC provided by health and care organisations, including those in the third sector (voluntary and charity). This includes specialist palliative care, and care provided by non-specialist staff, such as GPs and community nurses (sometimes termed ‘general’ or ‘core’ palliative care). Where relevant, the report will refer specifically to specialist palliative care (SPC).

This investigation aims to improve the experiences of people accessing palliative and end of life care (PEoLC) services in England. Palliative care aims to improve the quality of life of people with life-threatening or life-limiting illnesses, and their families. It does this by taking a holistic approach, which means it addresses a person’s physical, psychological, social, and spiritual needs.

In England the first national strategy for PEoLC was published in 2008 following recognition that people did not always die in their preferred location or receive high-quality care. Since then, national publications have described what people should be able to expect from PEoLC, but they have also highlighted continued concerns about the delivery of services in England.

To help explore the delivery of PEoLC in England the investigation considered the care and experiences of Dermot and his family. Those experiences are referred to as ‘the reference event.’ Due to the scope of HSIB’s investigation, it focused on the PEoLC components of Dermot’s care, and not the diagnosis and treatment of his sarcoma.

Dermot was 77 years old and lived at home with his wife. He had been diagnosed with a myxofibrosarcoma (cancer of the soft tissues) in his armpit. Following surgery and radiotherapy, which were hoped would cure the cancer, the cancer returned and was found to have spread to other parts of his body. It was no longer possible to cure Dermot’s cancer and so he was referred to specialist palliative care services.

Dermot initially received specialist palliative care at home from a team of specialist nurses. An assessment of his needs identified his main issues as nausea, anxiety, insomnia, and constipation. The assessment also resulted in a referral to a support organisation for Dermot’s wife, but the referral did not progress and so support was not provided.

During the 9 days following his assessment, Dermot’s health deteriorated, and it was not possible to control his symptoms at home. He was admitted for inpatient specialist palliative care at his local community hospital. The aim of the admission was to manage Dermot’s symptoms and then discharge him home. However, his health rapidly deteriorated and he remained at the community hospital until the end of his life. Two days before Dermot died, his consciousness level decreased, and he became more settled and free of pain.

The investigation into Dermot’s PEoLC found that his holistic care needs and those of his family were not always met by the services available to them. Several themes were identified that were considered in a national investigation, including:

• The needs of people and families, and what they are led to expect from PEoLC, cannot always be met by current services.
• The existing ‘landscape’ of PEoLC services in England is confusing, with multiple organisations involved in delivering care which is variable depending on where people live.

The national investigation visited PEoLC organisations across England, and engaged with people with lived experience, national bodies, and experts. The national investigation’s findings echo those of several national publications relating to PEoLC since 2008, which highlight limited progress in improvements to PEoLC in England over recent years.

• Health and care services in England are not always able to provide individualised, equitable and co-ordinated PEoLC to meet the holistic needs of people and their families. They are unable to consistently provide what people have been led to expect from PEoLC.
• Holistic assessments for PEoLC may focus on physical care needs, with more limited attention to identifying, understanding and addressing other care needs, particularly psychological needs.
• The availability of PEoLC across England is variable and inequitable. This is influenced by the location of third-sector organisations, available charitable donations and NHS commissioning, and workforce shortages. There is no stated minimum standard for PEoLC that all people must be able to access.
• There is limited information to help the public and health and care staff to identify, access, and understand the roles of different aspects of PEoLC, with variation in words and definitions.
• PEoLC services are not always able to proactively plan care for people whose condition will deteriorate because of limited inpatient PEoLC and the unpredictability of some diagnoses.
• There is limited, specific guidance to support integrated care boards to identify the PEoLC needs of their populations in line with the expectations of the Health and Care Act 2022, and what could/should be done to address those needs.
• There is limited support available for health and care professionals to have honest conversations with people around death and what to expect, and to plan for the end of life.

1.1.1 Palliative care aims to improve the quality of life of people with life-threatening or life-limiting illnesses, and their families (Marie Curie, 2022; World Health Organization, 2020). A life-limiting illness is one that cannot be cured and that someone is likely to die from, for example, advanced cancer. A person may receive palliative care for many years, and it does not necessarily mean that the end of their life is imminent (Marie Curie, 2022).

1.1.2 End of life care is sometimes seen as a component of palliative care, provided when a person is nearing the end of their life. In the NHS, people are considered to be approaching the end of their life when they are likely to die within the next 12 months (NHS, 2022). The National Institute for Health and Care Excellence (NICE) provides guidance on the care of adults in the last days of their life (National Institute for Health and Care Excellence, 2015) and a quality standard to support high-quality end of life care (National Institute for Health and Care Excellence, 2021).

1.2.1 Palliative care seeks to take a ‘holistic’ approach to care by considering a person as a whole and addressing their physical, psychological, social, and spiritual needs (NHS, 2022). People’s holistic care needs include the following (National Coalition for Hospice and Palliative Care, 2019):

• Physical – symptoms such as pain, breathlessness, nausea and vomiting.
• Psychological – such as anxiety, depression and anticipatory grief.
• Social – support for and communication with family and friends.
• Spiritual – spiritual, religious and existential needs.
• Cultural – such as language, rituals and dietary needs.

1.2.2 A person’s care needs will vary as their life and illness progresses, and particularly as they approach the end of their life. Many of their symptoms can be managed with support from appropriate health and care services (see 1.4).

1.2.3 In England, the Gold Standards Framework (GSF) is often used to identify people nearing the end of their life (Gold Standards Framework International, n.d.). The GSF has three key steps – identifying people who may be in the last year of life and their needs; assessing their current and future needs; and creating a plan to support them to live and die well (Gold Standards Framework, 2011).

1.2.4 The GSF also provides a common language with the use of a ‘prognostic indicator’. This is a set of trigger questions to help staff recognise when a person is nearing the end of their life. People are coded based on their needs such as amber (‘weeks prognosis’) or red (‘days prognosis’) (Gold Standards Framework, 2011).

1.3.1 In 2008 the [former] Department of Health published the first national strategy for end-of-life care in England (Department of Health, 2008). This followed recognition that people did not always die in their preferred location or receive high-quality care.

1.3.2 Following the 2008 strategy there have been several publications by governmental, policy, regulatory and third-sector (including voluntary and charity) bodies describing the ongoing need to address quality concerns in PEoLC (see appendix B), particularly as demand increases. Demand is increasing as the population grows and people live longer, and conditions such as cancer become more common (UK Parliament Post, 2022). PEoLC also has a role supporting people with multiple long-term conditions and/or frailty (Stow et al, 2019).

1.3.3 In 2021, the National Palliative and End of Life Care Partnership published ‘Ambitions for palliative and end of life care: a national framework for local action 2021-2026’. This was a re-publication with the same ambitions as described in its framework for 2015 to 2020. The framework set out six ambitions to address ongoing gaps in PEoLC and describes what people should be able to expect to receive from services (see figure 1).

1.3.4 The Health and Care Act 2022 established new NHS bodies, called integrated care boards (ICBs), to plan and deliver health and care to meet the needs of the population in their geographical footprints. The Act included a function to ‘arrange for the provision of the following to such extent as it considers necessary to meet the reasonable requirements of the people for whom it has responsibility – such other services or facilities for palliative care as the board considers are appropriate as part of the health service …’ (Health and Care Act 2022).

1.4.1 PEoLC provision in England is complex, with many organisations involved in the care of people and families. In general the NHS commissions (funds) fully or in part the following types of PEoLC (NHS England, 2016; 2023):

Core (also referred to as general, universal, or non-specialist targeted): delivered by all staff in health and care, and by non-specialist staff at specific PEoLC organisations. Core includes GPs and community nursing

Specialist: expert palliative care delivered by multidisciplinary teams with specialist knowledge and skills to meet people’s needs where they cannot be met by core services. Staff include consultants in palliative care and oncology, specialist palliative care nurses and allied health professionals (for example occupational therapists). People’s needs may be complex or require specialist consideration.

1.4.2 The above types of PEoLC are delivered to people and their families by the following sectors with the choice of care setting guided by various factors, including a person’s preferences:

• NHS healthcare – services delivered primarily by the NHS to people in hospital or community settings, including in their own homes. Organisations may deliver core and/or specialist PEoLC.
• Social care – services delivered by social care organisations. Organisations may include delivery of core PEoLC.
• Third sector – commonly voluntary or charity organisations that deliver health and/or social care in inpatient and outpatient settings. Some charities refer to themselves as hospices and may deliver core and specialist PEoLC.
• Private sector – not considered in this investigation.
• Other – including informal caring support provided by friends and family.

1.4.3 The funding sources for PEoLC vary depending on the sector providing the care. This investigation focused on PEoLC delivered by the NHS and third-sector (charity) organisations. The following is a simplified summary of the ways in which PEoLC may be funded:

• By the NHS – fully NHS-commissioned PEoLC services include core services provided via NHS general practices, community healthcare organisations, and hospitals, and specialist services via NHS-led community and inpatient units.
• Through charitable donations – charities that deliver both core and specialist PEoLC may do so with sole funding coming from charitable donations.
• A combination of NHS funding and charitable donations – core and specialist organisations that deliver PEoLC may also receive a mix of funding through NHS commissioning and charitable donations. Proportions of each can vary, but in general, for adult services with mixed funding, around 30% is from the NHS.

1.4.4 Hospice care is a ‘style’ of PEoLC which places a ‘high value on dignity, respect and the wishes of the person who is ill’ (NHS, n.d.). Hospice care may provide specialist and/or core PEoLC and is often primarily funded through charitable donations. Hospices are commonly located in areas where individuals have historically set up a charity to meet the PEoLC needs of a local community.

1.4.5 Following referral for care, hospices can often provide a wide range of services to meet the holistic needs of people and their families (Hospice UK, n.d.a). Most hospice care is now delivered in settings including day centres, care homes, and in people’s own homes, rather than in inpatient facilities.

1.4.6 Hospice at home is the provision of hospice-style care in a person’s home. It aims to bring ‘the skills, ethos and practical care associated with the Hospice movement into the home environment’ (National Association for Hospice at Home, n.d.). Hospice at home may operate from a main hospice or through a specific hospice at home organisation. These services are again funded through charitable donations and/or NHS commissioning.

2.1.1 Dermot first found a small, hard, painful lump in his right armpit on 17 February. Following tests he was diagnosed on 26 March with a myxofibrosarcoma (a cancer of the fibrous tissues surrounding muscles). The sarcoma was classed as low-grade, which means slower growing/less likely to spread. Dermot’s consultant surgeon, who he had seen in the independent sector (private healthcare), discussed the diagnosis with a local NHS sarcoma multidisciplinary team and referred Dermot to an NHS hospital which specialised in sarcoma management.

2.1.2 Dermot’s care was taken over by the specialist hospital. The recommended treatment was surgery and postoperative radiotherapy, with an expectation ‘to cure’. A sarcoma clinical nurse specialist (CNS) documented that they had introduced themself and their role to Dermot and his wife and provided contact details for their team and the hospital helpline. The CNS role included the identification of any complications after the planned surgery, such as infection. Dermot’s wife did not recall being introduced to the CNS nor information about their role.

2.1.3 Dermot underwent surgery on 13 May. The cancer was found to be more advanced than in clinic 2 weeks previously (measuring 10 cm). The whole cancer could be removed completely and there was no evidence of spread. A sample of the cancer taken at surgery subsequently showed that it was a grade three (high-grade, which means it was more likely to spread) myxofibrosarcoma. Given the findings, the surgeon considered that radiotherapy would be advisable and so they discussed this with clinical oncology colleagues. Dermot was later seen in a post-operative surgical clinic at the specialist hospital on 28 May.

2.2.1 Dermot was referred for post-operative radiotherapy more local to his home at a dedicated sarcoma service. This service provided care to a large area/population and was staffed by specialist sarcoma oncologists. The plan was for Dermot to receive radiotherapy and have local follow-up to evaluate his progress. Details of the local oncology (cancer specialist) CNS were given to Dermot as a point of contact; Dermot’s wife did not recall this information being given.

2.2.2 Around 3 months after surgery, Dermot called the sarcoma CNS at the specialist hospital to say that he was experiencing nausea following completion of his radiotherapy. He was advised to contact the ‘local team’ (the oncology service where he was receiving radiotherapy) as they had current information on his care and he had been discharged by the specialist hospital. He spoke to the local oncology CNS and it was felt that the nausea was unrelated to the radiotherapy that he had previously received.

2.2.3 Ten days later Dermot had a telephone clinic appointment with the consultant oncologist at his local NHS hospital. They discussed Dermot’s nausea, but as he was feeling fitter and wanting to get back to playing tennis, further investigation was not felt to be needed at that time. A plan was made for him to go to a follow-up appointment (in clinic) in 6 weeks’ time, which coincided with a 3-month follow-up after radiotherapy.

2.3.1 On 13 October, Dermot approached his GP for an appointment because he was experiencing pain on his right-hand side, just above his hip joint. Prior to seeing the GP later that week, Dermot saw an independent physiotherapist who found a possible mass in his abdomen.

2.3.2 Dermot contacted the independent consultant surgeon again and was seen on 14 October. Dermot had a computerised tomography (CT) scan in the independent sector on 15 October.

2.3.3 Dermot had a telephone consultation with the independent consultant surgeon on 16 October. He was told that the CT had shown a recurrence of the cancer in his right armpit, and that the cancer had spread to his lungs and abdominal tissues. Dermot was made aware that this was ‘very bad news’ and the focus would be on ‘controlling the disease rather than cure’.

2.3.4 On 22 October, Dermot had a telephone consultation with the consultant oncologist at his local NHS hospital. Dermot was documented to have been told that his prognosis was such that his life expectancy was measured in months. The consultant oncologist discussed chemotherapy to slow disease progression and stressed that supportive care was important. A plan was made to ask Dermot’s GP to refer him to community specialist palliative care (SPC) services.

2.4.1 Figure 2 provides a visual timeline of events affecting Dermot and his family following his referral to specialist palliative care.

2.5.1 On 11 November Dermot’s wife and wider family called the SPC CNS team. They described that he was continuing to experience nausea, had deteriorated physically, was losing weight and was unable to eat. Dermot’s wife also asked for support for herself and made enquiries about Dermot being admitted to an inpatient bed. The CNS team explained that they were trying to manage Dermot’s symptoms at home and provide time for medications to work. The family asked to speak to the medical team for a review of Dermot’s care and a telephone call was planned for later the same week.

2.5.2 On 12 November Dermot’s wife rang the SPC CNS team asking for urgent help because of Dermot’s worsening physical and psychological symptoms. There were no hospice beds available at that time in the region, and the family wanted to avoid Dermot being admitted via an emergency department to hospital. A CNS called Dermot’s wife back and she was told that a bed would be available the next day at the local community hospital, which had six SPC inpatient beds managed by a hospice team. In the meantime, the plan was to provide support to Dermot and his wife at home via a local ‘care at home team’ (part of the community healthcare organisation).

2.6.1 On 13 November Dermot was admitted into an SPC bed at his local community hospital for symptom review, medication management and emotional support. Care was jointly provided by the community healthcare organisation (on site) and a hospice (located elsewhere). Initially Dermot’s family were unable to visit him in the community hospital due to COVID-19 restrictions.

2.6.2 On 13 November Dermot was first seen by a consultant in palliative care who noted his main problems as anxiety and nausea. A falls prevention care plan was completed, and no concerns were noted. During the assessment a ‘do not attempt cardiopulmonary resuscitation’ recommendation was discussed, but that other care would still be considered. The plan was for Dermot to be discharged home if his condition stabilised.

2.6.3 On 13 to 14 November overnight Dermot was found to have fallen twice and had likely hit his head. He was unsettled and confused. A healthcare assistant was allocated to sit by his side-room door to prevent further falls.

2.6.4 Between 14 and 16 November Dermot was reviewed each day by medical and nursing staff from the community healthcare organisation and the hospice. Dermot’s symptoms of anxiety, nausea and insomnia continued. He suffered from low blood pressure on standing, and shortness of breath on exertion, so received a blood transfusion. It became apparent that Dermot’s health was rapidly deteriorating and that he may need to stay at the hospital for end-of-life care.

2.6.5 On 16 November Dermot’s family raised concerns with the hospital that he was anxious and that his care needs were not being met. Dermot was then referred for counselling and was to be seen by a chaplain. It was also documented that Dermot’s wife had been offered counselling and that she would consider it.

2.6.6 On 17 November Dermot’s family telephoned the hospital to enquire about his wellbeing and to ask to speak to a consultant. The family also asked for Dermot to be transferred to a hospice; they were advised that Dermot was already ‘in a hospice-funded bed’. The family were concerned that Dermot had not settled physically or psychologically.

2.6.7 On 18 November Dermot’s wife and sister were able to visit him for the first time. Up until this point visiting restrictions due to COVID-19 had prevented the family from visiting. Following advice from a national cancer charity and a face-to-face meeting with the clinical team, the family were able to visit Dermot. It was also planned to offer Dermot counselling following family concerns that his anxiety had not been addressed. Dermot ‘agreed that this may be beneficial’.

2.6.8 On 19 November a consultant in palliative care documented that Dermot appeared to be approaching the end of his life. On 20 November Dermot was again seen by the same consultant in palliative care. Dermot’s main issues were constipation, anaemia, and insomnia (because of a fear of closing his eyes and dying alone). The family wanted Dermot to have someone with him continuously and so they arranged for a doula (a person trained to support people at the end of their life, including providing emotional and spiritual support) to be with Dermot during the daytime, while they stayed with him overnight.

2.6.9 On 21 and 22 November Dermot’s condition continued to deteriorate, and he received further medication which helped relieve his symptoms. On 22 November Dermot was no longer responsive but appeared settled and pain free. Dermot died on 23 November with his wife and sister by his side.

3.1.1 The investigation was told by Dermot’s family that PEoLC services did not meet his and their holistic care needs. The family felt that Dermot’s physical and psychological care needs were not fully met; the rapidity of his deterioration was not appreciated; and his wife’s needs were not met. The following sections will explore these concerns.

3.1.2 Following Dermot’s diagnosis of the recurrence of the sarcoma he was referred to specialist palliative care (SPC) services. SPC was provided by Hospice 1 (see figure 3), as it held the contract to deliver SPC in the area in which Dermot lived. Prior to Hospice 1’s involvement in the area a local acute hospital trust had, for many years, provided a service to meet some of the PEoLC needs, but there had been no contracted hospice services.

3.2.3 The ICB told the investigation of a shortage of inpatient SPC beds in the area in which Dermot lived. This was the result of the historical situation and lack of a charitable hospice in the area, as described in 3.1.28. As a result, there was a planned hospice in development, but challenges raising charitable funds had limited its progress. Parts of the ICB area were described as “deprived” which may have affected charitable donations.

3.2.4 The hospices described in figures 3 and 4 were funded in different ways. Hospice 1, for example, was mostly charity funded and Hospice 2 was entirely NHS-commissioned/funded. The hospices described how the sources of their funding influenced what they delivered. The investigation was told by charitable hospice leads that where the NHS was more involved in the design of services, there was potentially less flexibility in what the hospices were able to deliver. Where the NHS was less involved, hospices reported being able to be more innovative and provide a wider range of holistic services.

3.2.5 When Dermot was admitted for SPC his family described that they had wanted him to be in a hospice bed such as those provided by the three hospices described above. Their reasons for this are explored in 3.3.7. However, they struggled to find information about what inpatient services were available and how to access them. This led them to seek help from a local cancer charity for advocacy with the [former] CCG. It took several hours to determine which inpatient beds Dermot could access, the length of waiting lists and what support was provided.

3.2.6 PEoLC and [former] CCG staff told the investigation that they were “not surprised” that the family struggled to find information because it was unclear and not always available. Staff described a lack of clarity about the PEoLC services available in the area, which made it difficult for staff and the public to know what they could access. This was exemplified by some staff telling Dermot’s family that Hospice 3 was an option when it was not because Dermot did not live in its catchment area, and other staff not being aware of the capabilities of the SPC facilities in the local community hospital.

3.2.7 The investigation found that for patients, families, and health and care staff there was limited clarity around available PEoLC services, the care they provided, and how they could be accessed. The areas in and around where Dermot lived were described by PEoLC staff as a “postcode lottery” for the availability of SPC services because of the way they were organised, as described in 3.1.25. The investigation heard that where multiple ICBs were responsible for commissioning PEoLC, navigation of services could be challenging.

Summary

3.2.8 When Dermot needed inpatient SPC there was not a bed immediately available. In comparison with the Ambitions Framework (see 1.3.3) the investigation found that, due to where Dermot lived, access to some care was limited. The investigation also found that PEoLC in the area was confusing for the family and for staff, with limited clarity on what organisations and services were available and where.

3.3.1 The investigation found a recurrent theme relating to a mismatch between the PEoLC Dermot’s family felt he required, and what was available and delivered by local services. They described that this added to their feelings of isolation, and the perceived lack of support.

Dermot’s prognosis

3.3.2 Dermot’s family were not sure what to expect following his diagnosis of the recurrence of the sarcoma. They described how they had been given limited information about the progression of sarcoma, risks of recurrence, and associated symptoms. The investigation was advised by the specialist hospital that it is impossible to predict which patients will develop rapid metastases and which will not. Therefore most surgeons will focus on the fact that many patients will receive curative treatment. The specialist hospital also shared a calculator with the investigation which supports prediction of the risk of metastasis; for a patient of Dermot’s age this suggested that 26% of patients at 5 years will have developed metastases, and 30% at 10 years.

3.3.3 Dermot’s health deteriorated quicker than his family (and potentially staff, see 3.1.9) expected. The family were under the impression that he had months to live rather than weeks. They did not recollect being told that he had ‘weeks to live’ after he had been graded as ‘amber’ on the Gold Standards Framework (see 1.2.3). The family felt that a poor relationship with their GP (see 3.1.7) and the short time between diagnosis and deterioration reduced opportunities for honest conversations about Dermot’s prognosis.

3.3.4 The investigation reviewed correspondence sent to Dermot describing his poor and uncertain prognosis, and the potential symptoms that may arise from the sarcoma. Dermot’s family reported that they were not always aware of the contents of correspondence. The family highlighted the difficulty of taking in such information, particularly at a time when they were trying to come to terms with the diagnosis. The consultant oncologist also told the investigation about the challenges of sharing distressing information, such as timing, the volume of information, knowing whether people have understood the information, and whether it is shared by the patient with wider family members.

3.3.5 Sarcoma UK told the investigation that the sharing of information about sarcoma with patients and families was a recurrent issue in the complaints they received. The charity told the investigation that information was challenging to share because of:

• the variability of the types of sarcoma
• the different parts of the body it can affect
• the complexity of symptoms
• the variations in prognoses.

Sarcoma UK described how some people’s health deteriorates rapidly after diagnosis, while others remain well for a long time. However, once a person’s condition starts to deteriorate it is often rapid and unpredictable.

3.3.6 The investigation explored the family’s understanding of Dermot’s prognosis and identified several factors that meant they thought he had a longer life expectancy. The family recalled being told that Dermot’s surgery was expected to be curative, and that radiotherapy was “belt and braces”.

3.3.7 They also did not recall being told about the potential for recurrence or the prognosis of a high-grade sarcoma. The family felt they had been misled by care planning that suggested a longer life expectancy (for example, Dermot had been encouraged to go on holiday in his caravan), and by the plans to ‘discharge’ Dermot from SPC when his symptoms were under control.

3.3.8 The investigation did not further investigate the effects of optimism on the PEoLC experiences of people and their families. There is evidence that healthcare staff may overestimate prognoses and this can limit people accessing PEoLC (for example, Enzinger et al, 2015).

Dermot’s inpatient specialist palliative care

3.3.9 Following Dermot’s admission to the community hospital his family explored opportunities for him to be transferred to Hospice 1’s original inpatient unit or another hospice. This was because of Dermot’s continuing symptoms that had not been alleviated. Ultimately transfer was not possible because of the catchment areas of the various hospices, waiting lists, and Dermot’s deterioration. Hospice 1’s original inpatient unit was in a different county and was not part of the commissioned service for the area where Dermot lived.

3.3.10 Exploring the SPC available in the community hospital and at Hospice 1’s original inpatient unit highlighted differences in terminology and expectations around the roles of hospices and other SPC organisations. Hospice 1 told the investigation that it was commissioned to deliver SPC at the community hospital, and both SPC and end of life care in its original inpatient unit, but that it called itself a hospice. The investigation found public and staff confusion around the similarities and differences between hospice care and SPC. Some PEoLC staff described hospice care and SPC as the same care, while others described them as different.

3.3.11 A subject matter advisor told the investigation that hospice models had changed since they were established. The traditional hospice model was one of a non-hospital environment where people from the local community could be admitted for care at the end of their lives. However, as health needs and preferences have changed, the hospice model has changed with many now delivering SPC in line with the NHS’s definition (see 1.4.1). The title ‘hospice’ is often used to maintain the link with the original charities that set up units.

3.3.12 Hospices told the investigation that they are often not able to meet the public expectations that have been created of the care they deliver. This mismatch was reported to be due to limited public awareness of how the hospice model has evolved. In Dermot’s case the bed he was in at the community hospital was described by different staff as an ‘SPC bed’ and ‘hospice-funded bed’.

3.3.13 Hospice 1 told the investigation that they were commissioned to deliver six SPC beds at the community hospital where Dermot was admitted. The care it delivered in the community hospital was described as similar to the care in Hospice 1’s original inpatient unit. Consultants from Hospice 1 visited the SPC beds and provided support via a 24/7 advice line. The nursing staff caring for Dermot were described by Hospice 1 as ‘generalists’ who cared for all the patients in the community hospital with additional professional development in PEoLC. At Hospice 1’s original inpatient site they had dedicated or enhanced ‘specialist’ palliative care nurses, on-site medical staff, and wider input from a multidisciplinary team.

3.3.14 Dermot’s family also wanted him to be transferred to an inpatient hospice so he could receive regular medical input and specialist care out of hours. The family were particularly concerned that Dermot had not received an assessment from SPC consultants while he was at home; the investigation found that the SPC CNS team had discussed his care with SPC consultants on two occasions, but this was not apparent to his family. At the time of Dermot’s admission to the community hospital, SPC consultant staff cover was not available 7 days a week; this has changed since. Dermot was seen by a medical or nurse consultant specialising in SPC on 7 of 9 days and the family recall seeing three different medical consultants.

Summary

3.3.15 The investigation found that Dermot’s deterioration was rapid and in contrast with what the family thought they were told by, or had inferred from, healthcare staff. The gaps between needs, expectations (as described in the Ambitions Framework (see 1.3.3)) and reality are explored in the next section of this report, with consideration of how the expectations around PEoLC have been created and why they may not always be met.

4.1.1 National policy, strategy and the National Palliative and End of Life Care (2021) ‘Ambitions for palliative and end of life care: a national framework for local action 2021-2026’ (the ‘Ambitions Framework’) (see 1.3.3) describe what people should be able to expect from PEoLC in England (see appendix B). National experts and policy bodies told the investigation that the Ambitions Framework is the primary document setting out what a person should receive. These ambitions have been used in support of ‘Statutory guidance for integrated care boards [ICBs]’ (NHS England, 2022b) to help ICBs meet the requirements of the Health and Care Act 2022.

4.1.2 The investigation was further told of historical influences on people’s expectations of PEoLC, and that marketing from local and national charities create expectations of services that they may not be able to meet. National and local charities, and PEoLC staff, described that people often expect traditional hospice care to be available in their area, often because it had been previously accessed by other family members. However, modern PEoLC is different to the traditional model. For example, subject matter advisors told the investigation of perceptions that when a person is dying the best place to be is in a hospice, and that this care will be readily available. The reality is that PEoLC can be provided anywhere and it is not possible to admit everyone who is dying to a hospice; palliative care services have very limited capacity due to ‘long-term underfunding’. Inpatient PEoLC (whether in acute or community hospitals, or hospices) therefore focuses on those with the most complex needs that cannot be met elsewhere.

4.1.3 During the investigation’s visits to regions and their PEoLC services (summarised in figure 5), and meetings with people with lived experience (see figure 6), an understanding of PEoLC in different parts of the country was developed. Organisations delivering PEoLC and their staff described the difficulties meeting the national Ambitions Framework (see 1.3.3) and the challenges involved in delivering services that meet the needs of their populations. People with lived experience described care that did not meet individual needs and wishes; care that could not be accessed due to the location in which someone lived; confusing PEoLC; and poor co-ordination leading to duplication of work by organisations.

4.1.4 The investigation did not challenge the national Ambitions Framework for PEoLC, which describe and aim for high-quality and accessible services. Rather the investigation sought to understand the gap between the Ambitions Framework for PEoLC and current service delivery, and how the delivery and understanding of PEoLC services may be improved across England.

4.1.5 The national investigation did not focus on PEoLC for a specific diagnosis. Rather it aimed to inform learning for the care of patients and families who receive any palliative diagnosis. However, the reference event highlighted the challenges associated with care of people with specific, rare and aggressive cancers, such as sarcoma, and the need to co-ordinate their care.

4.1.6 Staff working in PEoLC told the investigation that, in general, the principles of palliative care management of people with sarcoma are the same as for other cancers. However, Sarcoma UK highlighted that there are nuances about the progression of sarcoma and the intractable nature of some symptoms that may not be known to some staff because it is rare. It was described that people with sarcoma may remain well for a period of time, then suddenly and quickly deteriorate.

4.1.7 The investigation has not investigated the specifics of PEoLC for people with sarcoma. However, the findings of this investigation and particularly Dermot’s case suggest potential benefit in ensuring early, specialist support and collaboration between different services to help address a person’s symptoms rapidly. There is evidence to suggest that ‘specialised palliative care intervention leads to significant symptom relief in patients with advanced [soft-tissue sarcoma]’ (Brandes et al, 2021). The investigation was also told by an Honorary Professor of Palliative Medicine that there are potential benefits in oncology and palliative care services working in a more integrated way. For example, close working relationships and a unified clinical record ‘meant that continuity of care was far easier to maintain’.

4.2.1 The Ambitions Framework (see 1.3.3) describes that people should be able to expect fair access to care that is co-ordinated and individualised. Individualised care means considering all of a person’s needs, including their psychological needs (National Institute for Health and Care Excellence, 2015). The investigation found that individualised care was not always being provided. This was due to confusion about the roles and responsibilities of organisations, variation in the availability of services, and difficulties identifying the needs of populations.

Unclear roles and responsibilities

4.2.2 The investigation found variation in the way common PEoLC terms were defined. This variation was described by national bodies and experts, organisations, staff, and the public. They reported that this variation meant some services were different to what people expected. This was exemplified in the reference event in relation to the perceived differences between a hospice and specialist palliative care (SPC) organisation.

4.2.3 National experts told the investigation that terms and definitions in PEoLC were “troublesome” and had become “medicalised.” This has led to PEoLC being seen as a specialty, rather than recognising it as everyone’s responsibility. When this investigation began, NHS England referred to core and specialist palliative care (NHS England, 2016), while organisations and staff used various terms. In January 2023 publications by NHS England started to refer to specialist, targeted, and universal palliative care (NHS England, 2023).

4.2.4 The definitions of SPC (NHS England, 2016) and hospice care (Hospice UK, n.d.a) were found to be sometimes used interchangeably. However, some PEoLC staff described how the two types of care were distinct and different. Some SPC organisations call themselves hospices, and there are hospices that do not see themselves as delivering SPC. The investigation was further told by staff and people with lived experience that it was unclear whether SPC and hospice services are the same or different.

4.2.5 The similarities and differences between SPC and hospice care is a long-standing and international debate (Hui et al, 2013). A hospice at home service told the investigation that it is the level of expertise that determines the type of care, not the location. The investigation found a need for greater clarity for the public and health and care staff on which services PEoLC services deliver. This finding has contributed to the actions for ICBs described later in this section.

Visibility of available services in an area

4.2.6 The investigation found that available PEoLC services were not visible to the public and health and care staff. This made it difficult to find out what services a person could access and what those services could deliver. This is reflected in the reference event, when Dermot’s family sought help from an advocacy group to help navigate the system.

4.2.7 Factors that contributed to the limited visibility of services included the variation in definitions discussed in 4.2.2 and the fact that ICBs were not always aware of what was available in their geographical footprints. One ICB visited by the investigation was attempting to map PEoLC services in its footprint, but described problems identifying services and the areas they covered. Hospice UK and national experts further told the investigation that charitable and voluntary sector involvement in PEoLC means that there may be multiple third-sector services in an area, but it may not be clear who they are.

4.2.8 National charities and a subject matter advisor described the importance of ICBs understanding the roles, responsibilities, boundaries, capability and capacity of PEoLC services in their geographical footprints. This understanding is necessary to support commissioning and co-ordination of services to meet the expectations of the Health and Care Act 2022.

4.2.9 The investigation also found that where services were known about, in some areas there had been limited engagement between ICBs and the third sector. This was particularly where there was minimal NHS commissioning of, and therefore involvement in, the design and monitoring of these services. The investigation was told by some third-sector leaders that limited engagement was due to some ICBs not knowing the services in their footprints or not inviting them into discussions, or because some third-sector services did not want to engage. Leaders perceived that more scrutiny from NHS commissioners of hospices and PEoLC services meant more of a focus on ‘numbers’ rather than ‘experiences’.

4.2.10 The investigation found that available PEoLC services were not always visible to those who needed them or needed to know about them to co-ordinate care. Visibility included awareness of information about the types of care offered by different organisations, their catchment areas, and their capacity, particularly those in the third sector. The investigation also found that information needs to be presented in meaningful ways for different communities.

4.2.11 As described in the previous section, visibility of PEoLC services affected the ability to plan and co-ordinate care across a geographical footprint. Co-ordination was also found to be affected by the number of organisations involved in a person’s care and poor interoperability of digital systems containing patient records. In the reference event Dermot’s family did not know who was co-ordinating his care as this was not apparent to them. The investigation was told of similar experiences by people with lived experience; not knowing who to contact out of hours if support was needed was a particular concern. The investigation observed that some areas did not have a single helpline number to call for PEoLC. This is in the context of evidence suggesting that community PEoLC is best delivered via a single point of access and 24/7 signposting (RM Partners, 2018).

4.2.12 National experts told the investigation that when multiple organisations are involved in a person’s care it can be difficult to know who has overall responsibility and who to go to when urgent help is needed. The investigation heard varying views from organisations and staff about whether a person’s GP was responsible for co-ordinating a person’s care or whether that responsibility passed to an SPC team once the person had been referred. SPC organisations were supportive of people contacting them for help while under their care but did not necessarily see themselves as having overall responsibility for a person’s care.

4.2.13 PEoLC staff told the investigation that assumptions were often made about who was co-ordinating a person’s care and this led to missed or duplicated referrals and care. Unclear responsibilities for the co-ordination of patient care has been identified as a theme in other HSIB investigations (Healthcare Safety Investigation Branch, 2021). The formation of ICBs creates an opportunity to develop improved co-ordination of PEoLC services across a geographical footprint; this has also been identified by The King’s Fund (2023).

4.3.1 The Ambitions Framework (see 1.3.3) describes that communities should be prepared to help at times of ‘crisis and loss’. This includes supporting people to have open discussions around ‘living and dying well’. Across the regions visited, the investigation found public beliefs that health and social care will provide for people at their times of need with access to care such as admission to a hospice (see 4.1.2).

4.3.2 The investigation found limited community-focused efforts to involve the public in conversations around PEoLC. One region visited had developed a ‘social contract’ between the [former] clinical commissioning group and the public. This aimed to clarify what PEoLC organisations and services were available, what the public could do to help support health and social care, and what they could expect from services. The investigation was also told of the role the contract had in supporting people to talk about death.

Supporting discussions about death and dying

4.3.3 The investigation was told by PEoLC staff that talking about death is seen by some of the public as “taboo” and there is limited support to talk about it honestly (Hospice UK, n.d.b). Seeing death as a taboo subject was described by Lofland (2019) to be because of the way dying has changed. More people now die from long-term rather than sudden problems and there is greater involvement of healthcare at death. These changes have resulted in families and communities losing ‘familiarity and confidence in supporting death’ (Sallnow et al, 2022).

4.3.4 The investigation was told by hospice leaders that advances in medicine and the development of specialist services for PEoLC had led to care becoming increasingly ‘medicalised’. This means that death may be seen as an illness rather than an outcome. Medicalisation was described by some hospices to have contributed to the public seeing death as something that can be “fixed”.

4.3.5 PEoLC staff called for the need to “normalise death and dying”. To do this requires increased community-based support for people. The investigation became aware of the ‘compassionate community’ concept which is orientated around building supportive, community environments to help with health promotion and support (Dumont et al, 2022). This concept may increase discussion in communities around death and dying, and lead to the development of greater mutual aid.

4.3.6 The investigation also met with the charities Compassion in Dying and Age UK to explore how discussions around dying and a person’s wishes can be supported. Compassion in Dying referred the investigation to various sources of evidence that suggest that death may not always be a taboo subject for people, but rather people are not given opportunities by healthcare professionals early following a diagnosis to discuss death and their plans (Care Quality Commission, 2021; YouGov, 2019). It further told the investigation about how it had reframed conversations around death and dying as “important” rather than “difficult”. Age UK has also developed a resource to support people of all age groups to open up conversations about death and dying (Age UK, 2020); it describes coping with death as an ‘intergenerational challenge’.

4.4.1 The Ambitions Framework (see 1.3.3) describes that people should expect to receive care from staff who are competent and ‘prepared to care’ (that is, they have empathy, skills and expertise). The investigation found no national competency-based training package for the development of specialist non-medical staff in SPC. Hospice 1 in the reference event told the investigation that it had developed its own bespoke course.

4.4.2 The investigation was told by national bodies that the lack of a training package limited recruitment into SPC, particularly from the allied health professions (for example, physiotherapists and paramedics). The investigation heard from PEoLC organisations that demand for their services was often greater than the capacity of their workforces.

4.4.3 NHS England told the investigation that there is a Palliative Care Career Development Programme currently under consideration. The programme will aim to initially develop foundational and fundamental knowledge for staff, and then to implement a career pathway and capabilities framework for the PEoLC workforce. The investigation was told that this will help to address the identified gaps around a competency-based approach to developing SPC practitioners. It was agreed by NHS England that it would be beneficial to ensure the development of the career pathway progresses and that it is accessible to all relevant healthcare professionals, not solely nursing, and that training includes insights from people with lived experience.

Decision to investigate

The national issues relating to access to, and the quality of, palliative and end of life care (PEoLC) were assessed against HSIB’s investigation criteria, as follows:

Outcome impact – what was, or is, the impact of the safety issue on people and services across the healthcare system?

Dying is inevitable and should be dignified; the holistic needs of people who are dying and their families should be met. Intelligence received by HSIB has shown that PEoLC is not always of high quality, with variation in services across England. Care may fall below the expectations and needs of people and their families, resulting in physical and psychological harm.

Systemic risk – how widespread and how common a safety issue is this across the healthcare system?

National publications since 2004 have suggested that there are limitations in the delivery of PEoLC in England. These limitations may be more noticeable in areas where funding for services is limited or where care is being delivered across wide geographical areas. The need for PEoLC is increasing as the population grows and people live longer.

Learning potential – what is the potential for an HSIB investigation to lead to positive changes and improvements to patient safety across the healthcare system?

National publications have described the limitations of PEoLC for several years. This investigation adds to learning to support improvements in PEoLC in England through the lens of a systems-based investigation.

Evidence gathering and verification of findings

Evidence gathering

The investigation:

• visited Dermot’s wife, and met his sister and brother-in-law via video call
• received submissions in writing from the family describing their experiences
• interviewed staff from health and care services involved in Dermot’s care and visited the community hospital where Dermot was cared for
• visited several hospices in and outside of the area where Dermot lived
• gathered further evidence from Dermot’s clinical records; relevant local and national policy and guidance; and academic literature.

For the national investigation, the investigation:

• examined PEoLC in five regions of England which included areas with large geographical footprints, in both rural and urban areas
• visited, either in person or virtually, hospices, community hospitals, primary care organisations and clinical commissioning groups/integrated care boards
• gathered further evidence from national publications and academic literature
• gathered the experiences of people with lived experience of family members who had required PEoLC
• engaged with national stakeholders and experts as shown below.

Analysis of the evidence

The following methods/frameworks were used:

• Systems Engineering Initiative for Patient Safety (Holden et al, 2013)
• AcciMap (Svedung and Rasmussen, 2002).

Stakeholder engagement and consultation

The investigation engaged with stakeholders and subject matter advisors to gather evidence during the course of the investigation. This also enabled checking for factual accuracy and overall sense-checking. The stakeholders contributed to the development of the safety recommendations based on the evidence gathered.

CQC: Care Quality Commission

NICE: National Institute for Health and Care Excellence

PHSO: Parliamentary and Health Service Ombudsman