When we first met at the general practitioner (GP) surgery back in February 2017, his carer (Ms Y) sat in the corner and began nodding off. She was exhausted, he explained, because she was a ‘nocturnal creature’. They were neighbours who enjoyed walking their dogs together but, when Mr X received the diagnosis of terminal colorectal cancer, Ms Y agreed to become his full-time paid carer, and moved in with him into sheltered accommodation in Derbyshire. He had no surviving relatives apart from an estranged sister, and so planned to leave everything to Ms Y, enough for both their dogs to be looked after, too. It later transpired that, due to some legal complications following his death, this never happened.
His problems began around October 2016, when his abdomen — although not painful at the time — became increasingly distended. After multiple trips to his GP and a trip to the accident and emergency department, he was later diagnosed with constipation, for which he was given increasing doses of laxatives. Finally, he was admitted to the hospital. The National Institute for Heath and Care Excellence (NICE) guidelines were followed (1), and a computerised tomography scan revealed a colorectal tumour. A stent was inserted to alleviate the symptoms. In preparation for the surgical removal of the tumour, a magnetic resonance imaging scan was performed. However, this revealed that the cancer had metastasised to his liver and kidneys. Mr X refused chemotherapy and radiotherapy and opted for end-of-life care.
Besides hypertension and a gout problem, Mr X was fit and enjoyed exercise. Thus, when his symptoms of faecal urgency and incontinence worsened, they were a significant impediment to his day-to-day life. He became increasingly less able to leave the house in fear of accidentally opening his bowls. He enjoyed walking his dogs every day, but the sheltered accommodation closed the entrance to a small park with easy toilet access, which meant he had to rely on his carer to walk his dogs. He did not want to wear a pad; he was willing to sacrifice more freedom for control over his dignity. Later on, we discovered that his abdominal symptoms had worsened; he no longer cooked for himself, and his carer helped him with personal care. He also was started on codeine, oramorph, and Buscopan for pain.
He came across as a stoic man, and he appeared to accept his prognosis. He was never uncertain — it was his destiny and he accepted it. The only time he appeared emotional was when he was recalling his memories of caring for his dying wife, who passed away from ovarian cancer in 1998. As he described the final two weeks of her life, he had tears his eyes and his voice was shaky. It struck me that he was using her final days as a measure of how he would go. ‘She knew she was going on Wednesday, so she told me to get the pastor in the morning, and she died Wednesday just before noon.’ He believed that, when his time came, he also would also know when he was going to die.
He was referred to Macmillan after his prognosis and was given a Macmillan leaflet, but he never contacted them. When asked why he had not called Macmillan, he maintained that he did not want to ‘waste people’s time’ (or that of the NHS) and services were ‘better spent on people in more need than I was’. He added that he would only get in touch when he ‘absolutely needed to’. In his description of his wife’s final days, it was clear that the Macmillan nurses had not been there when they promised, and so it seemed that his experiences at the time had coloured his perspective on Macmillan’s end-of-life care in an unfavourable light.
When evaluating Mr X’s plan, I was struck by how he was referred to Macmillan but then heard nothing more from them. Macmillan could have been helpful in arranging a will or finding ways of improving his independence. Because of this experience, I wanted to investigate areas within palliative care in the community and how current practices may be improved to help bridge the gap between such services and terminal cancer patients.
Supportive, palliative and end of life care
End-of-life care is defined as care delivered to patients in the last four to six weeks of their lives (2), but it can also begin up to one year before the approximate date of death in the form of palliative and supportive care, as the patient is followed through their cancer journey (Fig.1) (3). Palliative care is care designed to improve quality of life and symptom control, through services primarily provided by specialists, such as consultants and nurse specialists (3). In contrast, supportive care is delivered by generalists, such as GPs and district nurses, and focuses on helping patients cope with the diagnosis as well as many social aspects, such as bereavement care (3). Nevertheless, palliative and supportive care overlap, as they both need to consider the patient as a whole. Both aim to improve quality of life in ways that consider patients’ physical, psychological, social, spiritual, and financial needs (3). As such, problems in one can cause problems in the other. Both services have components related to the patients’ families and other carers and not exclusively to professionals (3).
Fig.1. Map of Patient Pathway (3)
Impacts of difficulties in access to palliative and supportive services
Patients with palliative and supportive care needs have complex issues that require careful consideration and coordination between specialist and generalist care providers. The burden of cancer can cause mental and physical difficulties for patients and carers. The gradual decline in physical independence can lead to family members taking on additional roles, such as dressing or washing their loved ones, thereby putting a strain on their relationship (4). Patients with unsupported carers have been shown to suffer a 39% increase in mortality (5), while up to 77% of terminally ill patients suffer from depression (6), despite only a quarter of these receiving any treatment for it (4). The financial burden of primary income loss for carers combined with the costs associated with some cancer and palliative treatments, and changes in lifestyle, can be another major source of anxiety (3,4).
Although there is a system in place to help tackle these issues, it is hampered by organisational and financial problems. Lack of coordination between services leads to missed or delayed referrals. Furthermore, lack of funding affects the provision of such services. A study of GP practices in Scotland found that a quarter of people who died from cancer were not included on their practice’s palliative care register (7). Those correctly identified were included at around seven weeks before their deaths, when it should have been 27 weeks (7). Research into ways of improving palliative care services is chronically underfunded — only 0.16% of government funding for health research is provided for end-of-life care (8). The government identified end-of-life care as a challenge that needed to be addressed by 2020 (9), yet the Department of Health and Social Care
expects trusts to curb their spending (10), forcing ‘cost-shunting’ and inequalities between health and
social care teams (11).
Not all staff shortages are caused by budget constraints. Ineffective workforce planning that does not take into account the length of time it takes to train doctors or nurses, for example, can be a significant problem (12). As such, the organisation and communication between teams suffer, leading to decreased continuity of care.
Improving coordination of care
There is a wealth of evidence to suggest the importance of addressing problems with patient access to palliative services, yet there are not many effective solutions (3). Guidelines from the Gold Standard Framework (GSF) were introduced to replace the heavily criticised Liverpool Care Pathway, and aim to provide a proactive service that anticipates patients’ needs and ensures a plan is put into place (13,14). Advanced care planning (ACP) is part of the GSF and is an opportunity to allow patients to voice their wishes ahead of the periods leading up to their last days of life, including their preferred place to die and the option to refuse intensive treatments at the end-of-life (3,13,14).
The early identification of patients needing ACP intervention is associated with a reduction in hospital admissions in a crisis and more home deaths (15). The GSF shows that when practices in England have a register for palliative patients, around 70% note their preferred place of death (15). However, noting the preferred place of death does not necessarily mean that patients may not change their minds and may wish to die in hospital (16) and, as such, continuing to update and review ACP is necessary, but it can be time consuming (17).
Coordination can be improved by targeted training of staff in communication. GSF training boosted confidence levels of healthcare professionals by 24%-28% across three cohorts (clinical commissioning groups, local authorities, and sustainability and transformation plan footprints) (15). Coordination with charities such as Macmillan Cancer Support can hugely improve patient experience, as it is able to offer specialised services, such as financial and will-related advice (4). However, some charities find that clinicians may view charities as less professional and rigorous than healthcare professionals (18). Until such perceptions are challenged with improved communication and training, the coordination between generalists, specialists, and charities risks causing delays and missed referrals to key services.
To further improve the efficiency of communication between multidisciplinary teams, the GSF suggests measures such as having a named person for each patient, who should be their primary contact early on (14). Flagging up services by providing leaflets alone is not enough; a follow-up model of care is required. NICE recommends reviewing patients physical, psychological, social, spiritual, and financial needs at set points — such as at diagnosis, the beginning of treatment, and as death approaches (3). Charities such as Marie Curie found that the introduction of out-of-hours phone lines and an end-of-life register and the opening of end-of-life coordination centres resulted in a 30% decrease in patients dying in hospital (19,20). After the Electronic Palliative Care Coordination System (EPaCCS) register was created, the results showed that the ability to share data with key healthcare services, including out-of-hours and acute trusts, significantly improved coordination and patient experience and reduced repetition (20).
Improving patient involvement
Although there is ongoing debate regarding the best training methods by which professionals can improve communication, evidence suggests that training in communication skills can enhance patient satisfaction and wellbeing (21–23). The Kings’ Fund found that, when patient engagement was improved, patients were better able to recall information about their condition, were more satisfied and had increased adherence to treatments and preventative screens (21). For this to be effective, information needs to be explained clearly and simply. Although there is an increasing focus on teaching communication skills in medical schools, for example, there still remains a gap that needs to be bridged (22,23). One in three patients do not understand their chronic illness (23). Therefore, information provision should be tailored to patients’ understanding and health literacy levels (24). Modes of communication also need to be considered; for example, postcards and to-do-lists are shown to be more useful to patients than posters (25). Leaflets in GPs’ waiting rooms are useful prompts for discussing end-of-life plans, but they are less useful when patients become housebound (25,26).
GPs need to be able to pick up signs of deterioration, such as sudden requests for home visits, increasing dependency on carers, or not recuperating following an infection (27). For cancer patients in particular, the GSF sets the prognosis as under three months for patients who are spending more than half of their time in bed (13). GP-led interactions tend to be more reactive when it comes to palliative care, mainly to avoid patronising patients or giving them unnecessary care, and opt instead to be prompted by patients (27). Furthermore, professionals are concerned that initiating palliative discussions may upset patients, but 90% of patients in a pilot study appreciated the opportunity to have this conversation (25,27). This is supported by research showing that patients are less likely to initiate interactions until they show a deterioration (28). As such, regular interactions between GPs and patients in accordance with GSF and NICE recommendations can avoid delays in receiving care.
Conclusion
End-of-life care is complex and requires a multi-disciplinary process, which, in turn, requires large-scale coordination of services in a patient-centred way. I have learned that ineffective communication can lead to delays or missed referrals, which can then leave patients to fend for themselves unnecessarily. Successful communication relies on coordination and proactive patient involvement. There are frameworks already in place that take this into account but, in a system that is underfunded in terms of end-of-life research and in-care provision, some patients miss out on key services. Nevertheless, charities can be key in bridging the gap in services, but coordination is fundamental. Ensuring training in effective communication and planning ahead can help achieve improved quality of care for patients and minimise delays.
The NHS is a system of limited resources for an increasing demand for care; as such, funding is always going to be a key issue. However, I think there are concepts that I take away from this for my own personal practice as a future doctor. Good communication is something that we all should strive for, but it is also cost effective in the long run. Mr X’s experience with his wife’s final days highlighted to me how people are shaped by their experiences, and I am humbled that he shared a glimpse of his journey with me.