Non-malignant palliative care: striving for equity
The provision of palliative care for people with life-limiting, non-malignant disease needs to improve, but difficulties around prognostication and a reluctance to discuss of end-of-life issues remain major challenges
The World Health Organization defines palliative care as 'an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.'1
The palliative needs of people dying from cancer in the UK are generally well addressed by a co-ordinated, specialist, patient-centred service. Patients living with long-term, life-limiting conditions, however, also have palliative care needs and, in 1992, a report from an expert advisory group recommended the expansion of palliative care services to all who needed them, whatever their diagnosis.2 These long-term conditions include heart failure, COPD, liver disease, renal failure, dementia and progressive neurological conditions. Focus has rightly been put on the optimal management of these conditions in order to maximise quality and length of life, but it is recognised that, by doing so, the quality of symptom management and consideration of end-of-life care can sometimes be compromised.3
The NHS 'End of Life Care' programme was initiated in 2004. It aimed to reduce inequity of care provision for cancer and non-cancer services and focused particularly on the implementation of various tools designed to facilitate care, such as the Gold Standards Framework (GSF), Preferred Priorities of Care (now called Advance Care Planning) and the Liverpool Care Pathway (LCP)(Box 1). While these tools are valuable for identifying patients and ensuring their needs are met, particular challenges in caring for this group of patients remain. These include difficulty in prognostication and a reluctance of health care professionals (HCPs) to engage in discussions around end-of-life issues.
In 2008, the Department of Health (DH) published a strategy document aimed at improving the quality of care provided for people at the end of their lives. It focused on an 'End of Life Care Pathway' (Box 2) and specified that it applied equally to people with either malignant or non-malignant life-limiting disease.4 This article will explore the problems around the provision of palliative care to people with non-malignant disease and will discuss some of the keys issues that can be addressed to help improve the quality of care.
IDENTIFYING PATIENTS
Before care for this group of patients can be improved, they first need to be identified. A lot of work has been undertaken to develop prognostic indicators in a variety of conditions. The GSF prognostic indicator guide can help identify patients entering their last year of life.5 It is commonly used in general practice to identify patients appropriate for inclusion on the palliative care register. Evaluation of GSF implementation in this setting has indicated that it can lead to improved management of patients with palliative care needs.6
DIAGNOSIS AND PROGNOSIS
Attitudes towards disclosure of diagnosis and prognosis have changed over the years. HCPs used to take a paternalistic approach and considered it 'in the patient's best interest' not to know if they had a terminal illness. However 'truth telling' is now considered integral to all aspects of patient care. Research, predominantly within the field of cancer, has shown that the vast majority of patients (up to 98%) want honest disclosure about their condition.7 However, there is evidence that HCPs remain uncomfortable about having conversations about prognosis and the end of life, even if patients indicate that they want to have them. Reasons for this include lack of time, fear of causing distress, and not knowing what to say in such situations.8,9
Prognostication in non-malignant conditions can be difficult. Disease trajectories are often uncertain and characterised by a gradual decline interspersed with acute exacerbations, any one of which could result in death. In dementia, there is a gradual decline in wellbeing and functional capacity, though the time line for this can be variable. This leads HCPs to feel uncertain about when to initiate conversations about prognosis and, in particular, end-of-life care.
DISCUSSING END OF LIFE CARE AND ADVANCE CARE PLANNING
Advance Care Planning (ACP) has been demonstrated to improve the experience of both patient and carers at the end of life and reduces the likelihood of inappropriate hospital admissions.10-12
At the point of diagnosis, the patient, carer and HCP usually view the end of life as an event that will occur in the future — a view often reinforced by difficulties with prognostication. This can lead to deferral of conversations around plans for the end of life and result in care that focuses purely on management of the condition.13 As a consequence, discussions about the patients' wishes for end-of-life care are often left until late in the course of the disease when the patient may be unable to make decisions or express their wishes.8 This is of particular relevance in situations where loss of capacity can be anticipated, e.g. in dementia, and in some long term neurological conditions.14 Yet there is evidence that, even with this group of patients, these topics are discussed too late in the course of their illness leading to the need for proxy decision-making.15 At this point carers are often reluctant to formulate an ACP without being able to ascertain the patient's wishes.16
The timing of discussion of ACP with a patient will be dependent on many factors. Those identified as suitable to be placed on an end-of-life register (i.e. they are considered to be in the last year of their life) are likely to require discussion about ACP. However, such planning is not a static process. It will require revisiting as the patient's wishes may change as their situation evolves. The NHS 'End of Life Care' website has produced a guide to ACP for health and social care staff in an attempt to promote its appropriate use.17
SYMPTOM MANAGEMENT
The type of symptoms and the symptom burden of patients dying with non-malignant disease are similar to those of patients dying with cancer. It is suggested that up to 16% of patients would benefit from hospice or specialist, domiciliary end-of-life care.18 Projects designed to improve access to specialist palliative care services have demonstrated they are well accepted, reduce hospital admissions and increase the likelihood of the patient dying in their preferred place of care.19
Currently only 12 to 15% of referrals to specialist, palliative care services are for non-malignant conditions.20 (Table 1) The majority of palliative care for these individuals is provided by the generalist care team. It is therefore important that these HCPs have the knowledge and skills to deal with the challenge of managing these patients and are able to recognise when they need to be referred to specialist, disease specific or palliative care services.21
A consultation with providers and users of generalist services identified that education was an important aspect of the provision of care, but barriers to this included lack of ability to engage busy staff, funding constraints, skill mix and turnover of staff.22 There has, however, been an injection of funding into staff training nationwide via the National End of Life Care Programme. This has facilitated the commissioning of a variety of study days and accredited modules aimed at up-skilling the generalist workforce. It is hoped that this will lead to improvements in the patient experience of end-of-life care.
HOSPITAL ADMISSIONS
Statistics about the place of death of patients with non-malignant disease suggests some increase in deaths at home since the publication of the End of Life Care Strategy in 2008. Currently 16.8% of deaths from causes other than cancer occur at home.23 This is progress, but still represents a minority of deaths despite the majority of people expressing a desire to die at home. Cancer services continue to achieve a better rate of preferred place of death than do services for non-malignant disease.24
One of the barriers to achieving the preferred place of death in this group of patients is the fluctuating disease trajectory of many long-term conditions. The clinical distinction between an acute exacerbation and the end of life can be very difficult to make and many patients are consequently admitted to hospital in their last few days of life, despite an expressed wish to die at home.25 In such circumstances patients with heart failure may be initially admitted for a trial of intravenous diuretics, patients with dementia for intravenous antibiotics (for pneumonia or urinary tract infection) and people with COPD for intravenous antibiotics and/or non-invasive ventilation. The purpose of these admissions is to improve signs and symptoms with the intent that they be discharged home if the therapy is either successful or futile. However, all too often, these individuals remain in hospital until their death.
This pattern of admission at the end of life can be influenced by the provision of a co-ordinated end-of-life home care service.26 A recent study has demonstrated that the use of ACP, GSF and LCP in primary care did not effect the number of deaths but reduced the proportion of deaths taking place in a hospital setting.10
Management of acute exacerbations in the community will reduce both the admission rate and the risk of dying in hospital. The British Heart Foundation (BHF) is running a pilot project, delivering intravenous diuretics in the home to patients suffering from end-stage heart failure, which is aimed at addressing this need.27 Many health services around England are developing palliative care co-ordination centres to bring together the services that will allow patients to remain in their homes at the end-of-life. Such centres are proving to be both efficient and cost effective.28
LIVERPOOL CARE PATHWAY
The LCP was developed by the palliative care movement to try and improve the quality of death of patients with cancer. It was designed to ensure regular and appropriate review of the person's management as they reach the end of their life, and to enhance communication between HCPs. Its use had been extended into many general care settings. The key to its effective use, however, was the appropriate education and training of HCPs who use it, along with good communication and involvement between the HCPs, the patients and their relatives. Unfortunately there have been sufficient examples where these essential elements were lacking to lead to a Government-commissioned, independent review of the pathway, led by Baroness Julia Neuberger. Her report, published last month (July) recommends that the pathway should be phased out, and replaced with individual end of life care plans.
In any event, the use of the LCP in non-malignant disease would present the same challenges as other aspects of palliative care due to the problems associated with prognostication and the uncertain course of many conditions.29
SUPPORT FOR INFORMAL CARERS
Carers are known to experience a variety of stresses, including fatigue, depression and anxiety, which can lead to a reduction in their health and quality of life and an increased risk of mortality.
Carers need information and psychosocial support but how this can be effectively achieved is yet to be determined.30 Services such as respite care and carer support groups are available and it may be that the informal support given to carers from the HCP looking after their relative makes a valuable contribution to their wellbeing. Sometimes referral to other agencies, such as counselling services, is appropriate but it is recognised that carers often neglect their own health needs in the midst of caring for someone else. It is only when their relative has died that their own needs come to the fore.
CONCLUSION
People dying from non-malignant disease in the UK have poorer care provision than those dying from cancer. The key challenges to addressing this inequity are the difficulty in identifying the end-of-life phase, reluctance of HCPs to discuss issues around prognosis or refer to specialist palliative care services, and the lack of identification of and planning for the patient's end-of-life wishes early on in the course of their disease.
Raising awareness of the needs of this patient group, and education and training of staff can lead to improvement in the delivery of care. The use of prognostic indicators can assist in identifying patients coming to the end of their life, and the use of electronic registers can help ensure timely consideration of their care needs. Good communication skills will ensure the patient and their family are aware of the implications of their diagnosis, have an opportunity to discuss their wishes, and formulate an ACP.
Initiatives that coordinate care within the community can reduce the need for hospital admissions and increase the likelihood of people dying at home.
Increased collaboration with specialist, disease specific and palliative care services and timely coordination of services will help to ensure that the patients' needs are met. All of these will result in a reduction of futile acute admissions and an increase in the number of patients who can die supported, in their place of choice
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