This article will discuss the end-of-life (EOL) care provision for a patient discharged from an acute trust into the community setting. It will highlight the importance of effective communication between the multidisciplinary team and the associated barriers that can impact patient care. Additionally, the benefits of advance care planning, holistic care and an understanding of how organisational structures can impact care delivery will be explored. Finally, the importance of recognising and addressing socio-cultural issues related to EOL care will be examined.
The beneficial outcomes of clear communication between health professionals in delivering successful palliative care and symptom control were highlighted by Spruyt (2011). This research described effective palliative care as a multi-dynamic professional intervention requiring medical and nursing staff, psychologists and social workers. Spruyt (2011) further reported that good communication, co-ordination and information sharing are paramount for good health outcomes, benefiting patients and their families.
This article aims to demonstrate the importance of a holistic, multidisciplinary approach to palliative care, including the advantages for patients and their families, as highlighted by Tuggey and Lewin (2014). The importance of advance care planning in managing the care of a palliative patient will be explored. Miller et al (2019) stated that, by implementing advance care planning, patients' wishes and preferences are respected. Additionally, this case report will demonstrate the impact of available organisational structures and national guidelines in supporting staff involved in palliative/EOL care. As explained by van Riet Paap et al (2014), organisational structures can hinder effective palliative care; thus, tailored changes in policies and guidelines must be carried out taking local demographics and national guidelines into consideration. The socio-cultural aspects of EOL care are essential factors in palliative care, as highlighted by Githaiga and Swartz (2017), and these will be discussed here as well.
The patient
This article concerns the case of Martin Jones (not his real name), aged 59 years, who had been diagnosed with pancreatic cancer. He had undergone a partial pancreatectomy to remove the tumour and was a hospital inpatient for around 2 weeks. He was referred to the acute hospital by his GP because of severe abdominal pain and jaundice. Following investigations carried out while he was an inpatient, it was confirmed that he had pancreatic cancer and metastases in the liver. While in hospital, his pain was managed with an opioid patch (fentanyl 175 mcg in total) and oral morphine when required. His hospital care was led by the ward medical and nursing professionals, who communicated with the community palliative care team regarding the patient's imminent discharge from hospital. He was discharged home with a poor prognosis and referred for holistic EOL care, which included pain and symptom control. This would be undertaken through shared care between the community palliative nurses, his GP and the district nursing team.
Communication in EOL care
Kourkouta and Papathanasiou (2014) defined communication as an exchange of information, feelings and thoughts between individuals using speech or other means. They highlighted the communication process between healthcare settings as a crucial tool to achieve the best care outcomes. In their qualitative study, Trovo de Araújo and da Silva (2012) described communication as one of the foundations of palliative care. During Mr Jones' hospital stay, it appeared there was a lack of communication at the organisation level, as well as with the patient and family. There was no effective communication with either the district nursing service or community palliative care team until immediately before discharge. Taran (2011) reported that poor communication between healthcare settings is the main reason why good care is not delivered. Slort et al (2011) stated that barriers to effective communication in palliative care are related to delays in diagnosis, time constraints and lack of training in this subject.
Brighton and Bristowe (2016) suggested that EOL discussions should be embedded in palliative care. This task aids comfort and provides security to the patient and their family, consequently enabling an effective therapeutic relationship to be built. Further, Gardiner et al (2012) emphasised the need for good communication between health professionals in all aspects of palliative care to optimise the care delivered. Gott et al (2011) stressed the necessity of good liaison during the transition of care, stating that good communication promotes continuity of care.
Hawley (2017) advocated the need for palliative care to be ‘rebranded’—first among health professionals and then across the healthcare system. She suggested early liaison among health professionals to design a palliative care pathway that is personalised to the individual patient's needs. Hawley (2014; 2015) described the bow-tie model to achieve successful outcomes in EOL and palliative care (https://tinyurl.com/34mbapak), suggesting that, when this Canadian model of care was implemented, a surge in early referrals to disciplines involved in palliative care was noted, thus optimising and improving patients' outcomes. The bow-tie model encompasses the complementary nature of the disease-modifying therapies and palliative care. It incorporates survivorship and rehabilitation into palliative care to tackle the pain and disease trajectory, enhancing palliative care delivery (Pereira and Chasen, 2016). Hawley (2015) suggested that the bow-tie model allows for recognition of an exit strategy to the patient's journey other than death, and thereby may facilitate earlier acceptance of the role for palliative care for people diagnosed with serious illness. Similar models of care are being slowly implemented in some NHS trusts within the UK.
There are many barriers to effective communication in EOL care (Table 1). In the case of Mr Jones, once the district nurses received the referral from the community palliative care team, they quickly responded by assessing the patient's needs, liaising with the rapid response team to provide a package of care until further arrangements could be made for daily carers to support the family, and ensuring the provision of necessary equipment. Additionally, an urgent referral for palliative consultant input to assist with symptom control was initiated. The Queen's Nursing Institute (QNI) highlighted the importance of the district nurse's ability to co-ordinate patient care (Department of Health et al, 2013). District nurses are in a prime position to integrate the required specialties, therefore meeting the patient's needs via a holistic approach. This co-ordination of care is a beneficial outcome of good communication and, in this instance, ensured the delivery of holistic patient-centred care and the implementation of best practice in EOL care and management.
Table 1. Effective communication and associated barriers
| Communication | Barriers | Evidence source |
|---|---|---|
| Communication at organisational level | Lack of understanding of other disciplines/services and their remits | Hawley (2017) reported poor integration within the multidisciplinary team due to misunderstanding of each discipline involved in a patient's care |
| Communication with patients and family |
|
De Lima and Pastrana (2016) highlighted a lack of understanding among patients and their family regarding palliative care. Additionally, a lack of investment in palliative care and time constraints pose a threat to effective care delivery in EOL and palliative care |
| Communication between specialties involved in palliative care | Discrepancy between disciplines and pathway referrals | Hawley (2017) highlighted that the disparity in the referral pathways and disjointed care among health professionals can hinder the efficiency of service delivery |
Holistic approach to palliative care and multidisciplinary integration
Zamanzadeh et al (2015) described holistic care in palliative practice as identifying the person as a whole and the interdependence between the biological, social, psychological and spiritual aspects of care. Additionally, Fitch et al (2015) suggested that providing holistic care will reduce the burden for palliative patients and their families. This approach should be used in the early stages of palliative care. Ferrell et al (2015) suggested that a multidisciplinary approach should underpin palliative care practice, as it improves patient outcomes. This is also supported by McManus et al (2014), who reported that having a multidisciplinary approach to delivering EOL care led to a 48.8% accuracy in estimating prognosis, whereby health professionals can be equipped to address the disease trajectory accordingly. It is clear from the evidence that such a multidisciplinary approach improves the patient experience.
The National Institute for Health and Care Excellence (NICE) (2019) advocated taking a holistic approach to individuals on the palliative pathway, in response to their continuously, and often rapidly, changing needs. This holistic approach should encompass physical, social, cultural, psychological and, if required, environmental aspects to ensure patient-centred care. However, Carter et al (2017) suggested that certain factors hinder the use of a practical holistic approach in EOL care, including poor knowledge of the illness, time constraints and poor co-ordination within the multidisciplinary team.
Despite these barriers and with the aim of delivering effective care for Mr Jones, the district nursing team was able to holistically assess and address his needs, including family support. Shared care with the community palliative team was implemented, which included daily active liaison with the patient's GP. Due to effective communication among the disciplines involved (district nurses, community palliative nurses, GP, palliative consultant and the care agency), the patient's care was optimised. In essence, effective multidisciplinary working ensured that the care delivered was patient centred and used the expertise of all the disciplines involved. Additionally, the district nursing team implemented advance care planning in accordance with NICE guidance (NICE, 2019), which recommends that this enhances palliative care. This demonstrates how a holistic multidisciplinary approach worked effectively in practice in this scenario.
Advance care planning
Advance care planning allows people to communicate and document their wishes with regard to how they want to be cared for as their condition deteriorates (Table 2). This includes treatment options and preferred place of care (Marie Curie, 2020). Rietjens et al (2017) stated that advance care planning enables patients to have their preferences planned and recorded in advance. It advocates the involvement of the family, health professionals and patient's wishes during the disease trajectory. Khandelwal et al (2016) highlighted a reduction in intensive care admission for palliative patients when advance care planning was in place. Additionally, Brinkman-Stoppelenburg et al (2014) stated that patients' needs are met in this way, thus alleviating symptoms and reducing the emotional burden on the patient's family. Houben et al (2014) shared these views and added that the concordance between preferences and care delivered improves patient outcomes. However, Seymour et al (2010) reported several barriers to implementing advance care planning, particularly in the community setting. According to their study, community palliative nurses acknowledge the need for advance care planning, but also face barriers such as time constraints, uncertainty regarding which health professionals should initiate the discussion regarding advance care planning, discrepancy in the understanding of advance care planning across the wider team and, lastly, the requirement for consistent documentation across the system.
Table 2. Benefits of advance care planning
| Aim | Benefits | Evidence source |
|---|---|---|
| Patient preferences are recorded | Decreases emotional burden on family members and loved ones | Despite difficult conversations at first, family members reported a sense of relief and comfort in having a designed plan for their loved one during their palliative care experience (Zwakman et al, 2018) |
| Planned care on the prognosis pathway and disease trajectory | Reduction/avoidance of acute episodes and inappropriate hospital admissions | Abdul-Razzak et al (2014) reported that health professionals can intervene according to the patient's wishes by preventing/reducing acute episodes |
| Guidance for health professionals on the end-of-life pathway | Planned care delivered in accordance with patient's wishes | By implementing the advance care plan, patients feel empowered to express their wishes and are assured that this plan will be followed (Michael et al, 2015) |
When Mr Jones was in the hospital, only his preferred placed of death had been discussed (his home), but this information was not recorded. The district nursing team was able to introduce the topic of advance care planning to the patient and his family on their first visit. During subsequent visits, relationships were established between the nurses and the patient and family, enabling this subject to be gently introduced and then more thoroughly discussed. An advance care plan was devised and recorded with the patient's and family's involvement. This consisted of a full discussion of care, symptom control management, the decision to stay at home if symptoms were effectively managed, funeral arrangements and the patient's will. NICE and the Social Care Institute for Excellence (2019) have stressed the importance of sensitivity and treating people individually in advance care planning. This was achieved in this scenario by careful, sensitive discussion in a timely and appropriate fashion by the team.
Organisational structures: locally and nationally
Sigurdardottir et al (2012) highlighted the deficit of attention paid to organisational structures in palliative care by researchers. According to their study, pain, fatigue, quality of death, measurement tools and assessment are the main topics in palliative research. Further, van Riet Paap et al (2014) outlined that handover of care, case management and the introduction of nursing guidelines are examples of problem areas in palliative care at the organisational level.
According to Line (2015), EOL care in the UK was rated as one of the best in the world. This is attributed to the comprehensive policies implemented nationally, the growing addition of palliative care into the system and structured hospice care. However, NICE (2019) recognised obstacles in accessing available palliative care. Issues such as fragmented communication, poor co-ordination of care and lack of patient knowledge of out-of-hours services were deemed organisational barriers to EOL care. Further, Gott et al (2011) reported discrepancies in training structures for palliative care across organisations. As a consequence, health professionals may lack confidence in managing EOL care.
During the care received by Mr Jones while in hospital, there appeared to be a lack of involvement from the community team (district nurses and community palliative team) throughout the discharge process. Despite having a local central access point where referrals are triaged for the community setting, no referral was sent to the community palliative team before the patient was triaged. The community palliative team received the referral directly from the hospital on the discharge date. Locally, there is no integrated discharge plan in place between the primary and secondary care. Local hospital staff do not provide enough updates on palliative care patients. This appears to be an ongoing issue within many areas of the NHS in the UK and requires urgent attention.
Socio-cultural aspects of EOL care
Steinberg (2011) stated that, owing to the heterogeneity of societies in many countries today, it is necessary to discuss the differences in palliative care approaches from both the perspectives of health professionals and patients. The cumulative experiences of both parties can interfere with how palliative care is dealt with and perceived. Cain et al (2018) emphasised the need for the health professional to consider the patient's social and cultural background when delivering palliative care. This will enable professionals to provide tailored care for patients at the end of life, with an awareness that people with different cultural backgrounds approach pain, suffering, death and spiritual matters in different ways. Cherny et al (2015) warned of the problems that health professionals face in delivering palliative care, particularly during symptom control management. By disregarding a patient's socio-cultural aspects, health professionals are at risk of stereotyping patients. Ohnsorge et al (2014) explained the importance of taking a patient's socio-cultural factors into account when delivering palliative care, especially when initiating conversations regarding the preferred place of care/death. According to Koffman (2014), it is only in recent years that the importance of the socio-cultural aspects of EOL care have been promoted in the UK and US. This approach aims to not only improve the holistic and tailored approach to palliative care but also improve patient outcomes. Organisations can promote this aspect of palliative care by investing in education for health professionals, within both the acute and primary care sectors.
During the care provided by the district nurses for Mr Jones, no socio-cultural difficulties became apparent. This was established through careful ongoing clinical assessment and the development of a strong relationship with the patient and his family. The implementation of advance care planning and the ability of the district nurses to listen and understand the patient's and his relatives' wishes contributed to a good relationship and effective rapport between the parties.
Mr Jones died 3 months after returning home, well supported by his family, district nurses, palliative care team and carers.
Recommendations
After reviewing the literature and the experience of providing care for Mr Jones, the authors have the following recommendations:
- Communication between the local hospital and the district nursing service requires urgent attention. Both settings would benefit from a flow chart to aid discharge planning. A specific and structured process during discharge planning when patients are at the EOL stage, with active involvement from the district nursing team, may be beneficial
- There is a need to increase awareness of community teams among the hospital staff
- Advance care planning conversations should be initiated during the hospital stay. Staff would benefit from further education on this crucial aspect of palliative care
- Training and education in palliative care may increase staff confidence, thus improving care outcomes. However, this training needs to be appropriate to the setting in which the care is delivered (hospital or community)
- Combined education for acute care and community care staff to start a dialogue about EOL care, with the aim of enhancing understanding of each other's role and unique challenges, would be of benefit. This may enable better communication between the sectors.
Conclusion
As more palliative patients choose to be cared for and die at home, the district nursing service plays an essential role in fulfilling this preference. Among the obstacles faced by the district nursing service when attempting to provide a smooth transition of care from the primary to secondary setting is missed or inadequate communication. This article has emphasised the advantages of proactive communication and multidisciplinary care while delivering palliative care in the community. Although there was a lack of communication with the patient about EOL care while he was in hospital and a lack of communication with the community team, the district nursing team was able to create a safe network of care for the patient and his family during his last days. Through a holistic approach, the district nurses were able to meet the needs of the patient and his family.
The article has highlighted the lack of integration locally between primary and secondary care. While carrying out the transition of care from the hospital to the community, there was a lack of communication between the teams involved. Therefore, it has been identified that, locally as well as nationally, a transformation in discharge planning is required. There is an increasing drive to provide care in the community setting, and a robust and efficient discharge system is essential if this is to be achieved. Despite increased use of the local central access point in recent times, this service would benefit from the active input of district nurses during discharge planning. Furthermore, training in palliative care and education on available services would equip staff to deliver good care and assist in signposting to the appropriate disciplines. Lastly, following the national guidelines, which advise implementing advance care planning when delivering palliative care (NICE, 2019), this case report has highlighted the advantages of such planning to alleviate the emotional burden that families can experience. This was achieved by clarifying, understanding and fulfilling the patient's wishes. Hence, there is a need to disseminate this tool across the NHS to increase staff awareness.
Skilled and effectively managed EOL care has come to the forefront of clinical practice during the COVID-19 pandemic. The recommendations in this article should be urgently addressed to ensure safe and dignified care at the end of a patient's life.
KEY POINTS
- Fragmented communication hinders the achievement of optimum palliative/end-of-life care
- Advance care planning enables professionals to provide holistic care for palliative patients and their family, while reducing the emotional burden experienced by family members
- There is a need for ongoing palliative care training for both community and hospital staff, and discharge planning from hospital to community settings needs improvement
CPD reflective questions
- How could communication between hospital and community be improved?
- How can advance care planning be disseminated and embedded in end-of-life care?
- What types of training would improve staff proficiency in end-of-life care?
- How can hospital discharge planning in end-of-life care be improved?