Defining ‘transition points’ in the illness course as standardised times to integrate palliative care

Abstract

Despite emerging evidence of the benefits of palliative care, and the apparent match of this form of care with patient preferences in the setting of advanced disease, there remains marked variability and many gaps in access to palliative care. A series of barriers to accessing services include appropriate timing of introduction of palliative care, who requires these services and how they should be delivered.

In this editorial, we raise the concept of evidence-based illness transitions as a solution to some of these barriers. Drawing on literature detailing integration of palliative care, these transitions are described as standardised points reached in an illness course, objectively identified and which herald a time of greater need – for care, for symptom relief. These transition points may be based in health service use milestones. By linking a clinician prompt to a transition point, a ‘flag’ can be raised for the clinician to consider tasks of palliative care or indeed a palliative care referral. In this way, through identification and use of illness transitions, integration of high quality end of life care can become standardised across populations and benchmarks for care can be established.

Keywords:

• Integration of palliative care
• illness transitions
• equity of access

The expanding role of palliative care to be earlier in an illness, and to extend to illnesses beyond cancer is advocated as evidence of its benefit to patients, family carers and health systems accrues.¹ Despite such benefits, palliative care is far from being considered a standard part of care, being accessed late, if at all. In Victoria, Australia, just 59% of patients with cancer access hospital-based palliative care, and this occurs 27 days (median) before death.² For 61% of those who die in hospital, first access to palliative care occurs in this final admission which concludes with their death.² For patients with non-malignant disease, access is both less and later. In a UK cohort of 42,758 decedents, access to palliative care for those with cancer was significantly longer than for those with non-malignant disease (53 vs. 27 days).³ Despite the evidence, barriers to high-quality palliative and end of life care remain significant – When is the right time? Who most benefits, and How should services be delivered? The following discussion considers these questions in turn.

When should palliative care be introduced?

While expressing support for early palliative care, health professionals report uncertainty about when this should occur.⁴ Appropriate time is required for palliative care services to build relationships, undertake conversations and planning, and ensure confidence in community-based care.⁴ More than 3 months have been associated with fewer hospital deaths and lower costs⁵, and data from early palliative care trials similarly suggest the effects of palliative care, relative to control arms, were not of statistical significance until 12–16 weeks after initiation.¹ Zeigler and colleagues have demonstrated that incremental advantages are associated with earlier engagement with palliative care from fewer emergency department presentations for those who received palliative care for more than 4 weeks to increased likelihood of death at home if more than 8 weeks contact.⁶ To achieve optimal patient impacts, expert consensus suggests referral within 3 months of an advanced cancer diagnosis for people with cancers that hold a median survival of 12 months or less.⁷

Who will benefit from palliative care and how are they identified?

It has been suggested that referral to palliative care should be based upon level of patient needs with those with greater need accessing specialist palliative care, while those whose needs can be managed within usual care be managed by generalists providing a palliative approach⁷. This concept of tiered care prioritised according to needs has merit. Yet, evidence currently suggests that clinicians are not regularly assessing needs or undertaking goals of care discussions, even in the setting of overt markers of severe illness, meaning patient access to palliative supports is variable.⁸ Automatic referral based on criteria has been advocated as an alternative.^7,9 We contend automatic criteria would facilitate an approach that is standardised, equitable and reduces individual clinician variation and that the concept of ‘transitions’ in an illness course represents such an approach.

We have defined such transitions that are evidence-based, disease-specific, and anchored in episodes of engagement with health services, with increasing engagement heralding change in illness course.² These are times of key change in the illness. For example, a hospital admission for a patient with prostate cancer with metastatic disease heralds subsequent poor prognosis and higher health service utilisation.² This admission therefore acts as a transition point and may prompt the clinician to consider additional domains to care, including, for example, referral to specialist palliative care. So defined, the illness transition is grounded in care systems and health service data can be used to raise an automated prompt to clinicians. Meanwhile, it is also grounded in population-level evidence, meaning the transition is objective and does not rely upon individual clinician recognition. Once the transition is reached and the prompt raised, the clinician can enact a response appropriate to the individual patient need. Such transition points have been defined for a number of advanced cancers, and can be similarly developed in other advanced illness diagnoses.

The clinical response to a transition?

Having determined which patients should be considered as benefiting from palliative care, and when this consideration should occur, what should be the response? And if engaging specialist palliative care, how can this be done within the available resources? Patients believe several components of care are important at the end of life, including having pain and symptoms controlled, having the opportunity to prepare for death including achieving a sense of completion, being involved in decision making about treatments and preferences, and being cared for holistically, as a ‘whole person.’¹⁰ Therefore the core activities that must take place in response to a person identified as reaching an illness transition must include: screening for symptoms and developing appropriate responses, considering psychological needs, family support, community support and providing information, as well as a willingness to discuss goals for the future according to patient preference. This may be undertaken by usual health providers, or, if those usual health carers seek additional input, by specialist palliative care.

If specialist palliative care is engaged, a model whereby palliative care workers are embedded in usual ambulatory or outpatient care clinics such as cancer, respiratory or renal clinics presents many advantages. It enables early engagement, it is acceptable to patients who view it as usual care, and acceptable to clinicians, it enables mutual learning between craft groups and is able to be resourced more readily than a ‘stand alone’ clinic or an inpatient or community-based palliative care model.¹¹ Furthermore it facilitates access to these inpatient or community palliative care services if and when the patient requires, without overburdening these services at a time that may or may not be most beneficial for the person and the use of limited resources.¹¹ Finally, the embedded model addresses challenges around the acceptability of palliative care for patients who see it as the expanded care team, providing a standardised pathway for high-quality care.¹¹

In conclusion, an approach to the high quality end of life care must be routine, standardised, must reduce variation in care and be resourced and able to service a large and increasing population. The model of palliative care proposed is based upon evidence-based transition points reached within an illness, whereby the clinician is prompted to respond, either by enacting components of the palliative care approach, or by engaging specialist palliative care including through an embedded model within usual systems of care delivery. Such a model facilitates standardised, high-quality care as a matter of routine.

Disclaimer statements

Contributors None.

Funding None.

Conflicts of interest The authors declare that they have no conflict of interest.

Ethics approval None.

ORCID

Jennifer Philip http://orcid.org/0000-0001-8227-0626