Barriers and challenges for non-cancer patients

Although there are ongoing challenges in delivering high-quality end-of-life care to all patients across the board (Addicott and Ashton, Reference Addicott and Ashton2010), previous literature suggests that these may be more pronounced for patients with a non-cancer diagnosis (Field and Addington-Hall, Reference Field and Addington-Hall1999; Addington-Hall and Higginson, Reference Addington-Hall and Higginson2001; Addicott and Ross, Reference Addicott and Ross2010). In the three sites presented here, service provision was not adequate or appropriate for supporting non-cancer patients nearing the end of life, but had instead largely been designed around the care needs of people with cancer. Analysis of the data sought to identify what particular barriers exist for non-cancer patients in accessing end-of-life care support. The analysis revealed some common, broad issues that impact upon access. These broad themes are interrelated, and provide learning opportunities for those involved in the planning and delivery of end-of-life care. The findings have been grouped into five sub-sections and each of these will be discussed in more detail below:

1. 1. Disease trajectory and patient identification

2. 2. Care planning and prognostication

3. 3. Referrals between provider services

4. 4. Funding structures and processes

5. 5. Workforce and training issues.

Disease trajectory and patient identification

Data collected across the three case study sites suggested that it is more difficult for clinicians to identify the stage at which non-cancer patients enter the end-of-life phase, or when they might benefit from more palliative support. Many service providers commented that they felt the more limited number of referrals for non-cancer patients to end-of-life care services was predominantly due to the unpredictable nature of the disease trajectories for non-malignant diseases, such as chronic heart or respiratory failure. Such unpredictability can render it difficult for clinicians to make an accurate prognosis of when an individual is approaching the end of life.

The unpredictable nature of non-cancer disease trajectories, and the associated difficulty of identifying when an individual is nearing the end of life, were partially responsible for less frequent referrals to support and care services for non-cancer patients, as the referrer felt less able or confident in determining the point at which such a referral was appropriate. Related to this, referrers reported concerns about the cost and resource implications of referring non-cancer patients to end-of-life services – particularly for those who could be receiving such care for a long period of time.

If professionals feel unable to make (and communicate) a confident prognosis about when a patient is nearing the end of life, they may refrain from making onward referrals to end-of-life care services, for fear of the resource and cost implications that may consequently arise. Clinicians were wary of repercussions from the local funding body (at the time of data collection, the Primary Care Trust) if inappropriate or costly referrals were seen to have been made.

Although a significant proportion of interviewees did attribute limitations in non-cancer referrals to the unpredictable nature of non-malignant disease trajectories, some interviewees – particularly disease specialists from non-cancer areas – commented that they do feel it is possible to determine with some certainty, the point at which a non-malignant patient enters the end-of-life phase.

With the example of heart failure, a clinical nurse specialist commented that health care professionals can look for evidence of specific and individualised clinical symptoms and triggers over time, which can assist in recognising when a patient has entered a more end-of-life phase.

However, while acknowledging this range of clinical triggers, it was also suggested that these triggers would not necessarily be so easily identifiable to a generalist health professional, who may have had less of a history of interaction with a particular patient. Previous research has highlighted the value (and indeed, common practice) of involving both specialist and generalist clinicians at the end of life (Addicott and Ross, Reference Addicott and Ross2010; Goodwin et al., Reference Goodwin, Dixon, Poole and Raleigh2011). Consequently, the development of support and guidance in this area may be beneficial. Such support should consider the availability of existing tools to support end-of-life care providers in this area, and identify gaps in the availability of existing knowledge.

Care planning and prognostication

Although the above discussion indicated that they feel clinicians are actually able to successfully identify the point when non-malignant patients are nearing the end of life, they also reported that clinicians then frequently fail to discuss that prognosis and subsequent preferences and care planning with a patient.

Another interviewee described how this particularly impacts within the hospital setting.

Interviewees suggested reasons why clinicians may refrain from initiating these sorts of conversations with their patients. One medical professional commented that clinicians may simply ‘shy away from those sorts of conversations because they are difficult conversations to have’. Several interviewees referred to previously mentioned suggestions that many patients with non-malignant conditions may be in a end-of-life ‘phase’ for a prolonged period of time, which can consequently make it difficult to judge the appropriate point to initiate a conversation about prognosis and care planning. The quote above also indicates that acute care specialists may be reluctant to acknowledge ‘defeat’ and shift focus towards more end-of-life care. These interviewees described the difficulty of striking a balance between enabling an honest and open discussion while not wanting to eliminate a patient's hope. The balance between honesty and clinical optimism is complicated. However, such complications should not prohibit the supportive care planning to meet individual patient needs, as they change over time.

Related to this point, many interviewees considered that end-of-life care services cater for patients who are very near to the end of life (that is, the ‘terminal’ phase of their illness), rather than supporting a broader group of patients at the end of life, who may not be at that stage of their illness, but who still require supportive care.

It would appear that discussions with patients regarding their prognosis and preferred place of care are held quite near to the end of life, and consequently supportive services then tend to receive referrals for terminal care (that at the very end of life). Alternatively, palliative rehabilitation (working with patients to manage their symptoms and maintain or improve their functionality) or intermittent supportive care may be more appropriate for patients with long-term conditions, who go through peaks and troughs.

There would be benefits in providing end-of-life support to patients who are at an earlier stage in their disease trajectory. This is particularly the case for non-cancer patients, who are at risk of sudden death, and who require intervention and support intermittently in conjunction with the dips in their condition. In order for services to reach patients earlier in their end-of-life journey, there needs to be more timely identification of patients and subsequent communication regarding patient preferences. Responsive care planning of this manner may also assist to prevent unnecessary and costly hospitalisations.

Many clinicians spoke of their concerns regarding discussing prognosis and care preferences with patients. In the first instance, there was some anxiety about who should be having such discussions with patients. Many interviewees felt that it should be the role of the consulting doctor and specialists.

Further, some clinicians found it easier to have such discussions around patient preferences with the family and carers, rather than the patient directly.

Many staff reported feeling anxious about when to have discussions with patients regarding prognosis and care preferences. As mentioned previously, there are particular concerns regarding maintaining a balance between having timely, realistic conversations with patients and giving patients some hope regarding their situation. This anxiety may then contribute to the tendency for discussions and referrals to occur quite near the end of a patient's life.

Second, some staff expressed anxiety about having discussions with patients regarding their preferences, as they were unsure whether there would be the support services available to meet these preferences. Ability to meet preferences may depend on what the preference is, the patient's place of residence and the patient's diagnosis. Particularly, patients who expressed a preference to be cared for in a hospice may be less able to achieve their wish because of the limited availability of inpatient hospice care in some regions – particularly for long or responsive periods of care. Similarly, it may be more difficult to support patients in the community who live alone because of the extent of their care needs. Such challenges in meeting patient care needs are not an issue specific to end-of-life care, but an ongoing difficulty in delivering care to a population within limited resources.

As such, care packages also need to be able to be flexible and responsive to preferences (and when preferences may change). Flexible and bespoke care packages for individual patients, to meet their potentially fluctuating care needs, would have the potential to more evenly and fairly distribute resources. Although there are known difficulties in accessing appropriate care, there are also occasions where existing care packages are not reviewed or reduced in light of stability or improvement in a patient's condition.

Referrals between provider services

Several interviewees discussed the organisation of specialist teams, particularly how these teams manage patient care, and reflected upon how this may impact upon the referral of patients with non-cancer diagnoses to end-of-life care services. Across the three case study sites, heart failure and respiratory patients were typically managed by specialist teams in the community (led by a nurse specialist), who essentially case managed the patients. As specialist community teams often perform this ‘key worker’ function, they can also act as a gatekeeper to other services, particularly additional and specific support for end-of-life care. Several interviewees speculated that some disease specialists fail to either refer patients onto, or alert them to the existence of alternative end-of-life care services.

Further to this, some ward staff appeared to be quite protective of patients, and operated to their own preference that patients should remain in their care in the acute setting. In many instances, the reasoning was that patients were ‘too sick’ to be discharged to the community, whereas in other cases staff reported that they avoid having discussions with patients regarding their prognosis and preferences for other reasons.

However, one interviewee suggested that this is not simply a case of disease specialists or institutions being deliberately ‘protective’ over their patients. Rather, some disease specialists may fail to refer onto end-of-life care teams or professionals because they are not familiar with the services.

Further, several interviewees commented that patients with non-malignant conditions tend to be managed in an ‘acute’ manner. Patients with long-term conditions are often admitted to hospital so that their symptoms can be managed during a period of acute exacerbation. Once their symptoms have stabilised, they will then be discharged back into the community where they are predominantly managed under the care of a specialist team. Within this process, however, the specialists often failed to engage with end-of-life care services.

Conversely, some specialist providers commented that end-of-life care services are actually designed to only accommodate those patients who are at the very end of life. This means that patients with non-malignant conditions may not be referred into (or accepted by) appropriate services at an early enough stage to fully benefit.

Funding structures and processes

The majority of interviewees emphasised that limitations in access to dedicated and responsive end-of-life care funding potentially acts as a barrier to the organisation of care provision, particularly for non-malignant patients. Historically, access to such expedited funding requires a health care professional to make a judgement that a patient is very close (e.g. six weeks) to the end of life, or has complex health care needs that require concentrated support. This system of funding allocation is less flexible to allow for support to be accessed in accordance with the peaks and troughs of some long-term conditions, or the gradual decline of other conditions or the frail elderly (who may not be considered ‘complex’).

The process for allocating funding is not particularly well tailored to the unpredictable disease trajectories of many non-malignant diseases. The organisation of care tends to require clinicians to make assessments for patients based on fairly rigid, time-bound prognoses. As asserted previously, making these judgements may be more difficult for non-cancer patients.

As a result, many interviewees reflected on current inequalities in the system. The criteria by which expedited end-of-life care funding is allocated can be very narrow, and non-cancer patients may suffer as a result.

In response to this problem, several interviewees commented upon the need to adapt the system by which funding is allocated – to re-assess the eligibility criteria so that the process can be more flexible and responsive to the nature of non-cancer patients’ disease trajectories. Clinicians called for a system that would enable them to access funding on a time-limited basis, when a patient is experiencing an acute exacerbation, but then to be able to reduce or withdraw funding as and when a patient reaches a point of relative stability.

However, it was suggested that this approach would need to be accompanied by support and communication skills training for health and social care professionals. Some interviewees discussed that it would be very difficult for clinicians to tell patients that care packages may be reduced or withdrawn.

In this scenario, it is possible that some clinicians would avoid the assessment process altogether – particularly to avoid raising patient expectations regarding ongoing support. This could result in some patients failing to be identified as having end-of-life care needs, and therefore failing to access appropriate services.

Workforce and training issues

The findings presented thus far demonstrate that many of the barriers that currently exist in the provision of end-of-life care services for non-cancer patients are underpinned by the need for more advanced training and education. First, it may be appropriate to adopt an approach to challenge the interventionist culture reported to prevail among clinicians, particularly medics. It is necessary to foster greater dialogue around the concepts of death and dying, so that clinicians are less inclined to perceive death as a medical failing, but rather something to discuss with patients and plan for.

This in turn should encourage clinicians to adopt a more open and honest approach, and to feel more comfortable about initiating conversations regarding diagnosis and care planning with their patients.

The findings have repeatedly emphasised the need to promote greater integration between generalist, disease specialist and end-of-life care teams. However, these efforts will need to be supported and underpinned by education and training, to ensure that all groups can become familiar with the support provided by other services. For instance, end-of-life care professionals need access to training and education in end-of-life care for non-malignant diseases, particularly as many professionals working in end-of-life care tend to have a background in cancer care.

Consequently, there may be limits and concerns around the levels of care that some palliative care professionals are able to provide for patients with other conditions, such as end-stage heart failure for example.

There is also a need to ensure that disease specialists and generalists are given access to skills and resources, which will enable them to identify when an individual requires a more focused end-of-life care approach. A set of guidelines that specify clinical triggers may be useful for generalists to identify the signs to indicate that non-malignant patients are nearing the end of life. In addition to this, there is a need to consider the education of health care professionals more widely, so that end-of-life care becomes an integral part of mainstream health care, as opposed to a specialist, separate service.

This section has highlighted some of the challenges that exist throughout the health care system, that potentially limit the ability of patients with a non-cancer diagnosis to access end-of-life care support. The following section will consider the implications of these findings and some possible actions to allow for increasing access.