Key Messages
- Identifying that a person has palliative care needs is a key component to providing high quality care, but it is not a simple process and assessing clinical symptoms is not always an accurate indicator of prognosis.
- Communication about prognosis has been identified as a major quality indicator in patient and family satisfaction with care at the end of life. [1]
- Predictive tools, such as the Supportive and Palliative Care Indicators Tool (SPICT), are useful for identifying patients appropriate for referral to palliative care services. [2] It has also been validated for use in the older person. [3] Reducing unnecessary medication or ceasing treatments that are non-essential can be challenging.
- Numerous validated tools have been developed to aid prognostication in advanced cancer, and of these the Glasgow Prognostic Score is the easiest to use.
Evidence Summary
Palliative care is no longer considered a separate stage in the health care continuum and there is a broad acceptance that people can access palliative care services or have palliative care needs whilst they are receiving active treatment for their illness. Recognising a person may be entering their last year of life provides a person with the opportunity to plan for their care. Not all patients who are in their last year of life will access or have need of specialist services. The following page will discuss the definitions around palliative care, prognostic tools and referral triggers to specialist services.
Definition
The World Health Organisation defines palliative care as 'an approach that improves the quality of life of patients and their families facing the problems 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.' [4] While a variety of organisations have developed their own definition of palliative care the key components of many are shared - these are a person-centred approach, the inclusion of family and carers in the care provided, the reduction of unwanted symptoms and the goal of optimising quality of life.
Palliative care is often delivered by health care professionals from a variety of disciplines, such as general practice, oncology or cardiology. [5] These services are called generalist palliative care and a significant number of people will access these services in the last year of their life. Specialist palliative care are services offered by health care professionals with advanced training in palliative care. These services can provide direct patient care or consultation support to generalist services in providing care to patients with complex palliative care needs. [6] This is consistent with the definitions provided by Palliative Care Australia, who identify the role of specialist palliative care services as providing clinical services to patients with complex palliative needs and consultancy support to health care professionals caring for people with palliative needs. [7]
For more information about palliative care see - CareSearch - What is palliative care?
For a discussion on the terminal phase of life see - CareSearch - Care of the Dying Person
Epidemiology
The Australian population is ageing as more people are living longer, and the median age of death has increased from 55.2 years in 1907 to 79.2 years in 2017. [8] In 2017 approximately 66 per cent of deaths in Australia were among people aged 75 or over, with the leading causes of death being heart disease, dementia, cerebrovascular disease, lung cancer and COPD. [8] Chronic diseases remain the leading cause of death for people over the age of 45, with accidents and suicides significant for Australians under 45 years and perinatal and congenital conditions the leading cause of death for less than one year of age. [8] The overall trend in Australia has been decreasing death and increasing life expectancy. However, there remains a significant gap between non-indigenous Australians and Aboriginal and Torres Strait Islanders, who have an 8.6 year lower life expectancy. [8] The increase in life expectancy has also risen to an increase in the burden of chronic diseases, as people live longer with conditions such as heart disease or dementia. Dementia, for example, is now the second leading cause of death in people over the age of 75 and is the leading cause of disability in the Australian community. [8,9] The World Health Organisation's projections for leading causes of death into 2060 remain relatively unchanged as chronic diseases and cancer remain in the top five. [10]
In 2017 approximately 51.6 per cent of admitted hospital patients who died received palliative care services with 46.7 per cent of those patients having a cancer diagnosis. [11] A significant portion of palliative care, however, is delivered in the community but data collection around this is limited. [12] The nature of end of life care, or care in the last year of life, is changing as fewer people die from communicable diseases and the management of chronic disease shifts clinical care toward protracted and unpredictable disease trajectories. [13]
Trajectories and Assessment
Identifying that a person is in the last year of life is a key component to providing high quality care toward the end of a person’s life. Several systematic reviews have examined the potential utility of predictive tools at identifying when a person should transition to a palliative care. [14] A recent review examined the predictive quality of the surprise question - 'Would you be surprised if this patient died in the next twelve months?' and found that the question performed poorly, particularly in non-cancer illnesses. [15] Another commonly used tool the Supportive and Palliative Care Indicators Tool (SPICT) has been found to be successful at identifying patients appropriate for referral to palliative care services in acute hospital, community and care home environments. [2] It has also been validated for use in the older person. [3] While this tool and others screen for appropriateness of referral to palliative care they do not express complexity or prognosis. The SPICT tool may be best used to identify that a person has palliative care needs.
Providing a person with an accurate estimate that they have entered the last year of their life is not possible but open and clear communication about estimates of prognosis is important. Communication about prognosis has been identified as a major quality indicator in patient and family satisfaction with palliative care. [16] In palliative care, prognosis relates to chronic progressive disease as opposed to a prediction of recovery. In many instances health care professionals may start their prognostic approach with the expected disease trajectory.
Disease trajectories have been formulated into theoretical models illustrating the potential differences in functional decline. By using longitudinal data researchers have plotted the terminal decline of a particular condition, as function declines death nears. [17] In some conditions such as cancer, there may be a clear transition into the terminal phase of the disease, whereas in other life-limiting illnesses, such as COPD, there may be periods of exacerbation and recovery. [17] The changing nature of health care and improved technologies and treatments requires us to consider the dynamic nature of trajectories.
A recent Australian study examined functional decline of more than 55,000 patients in the last four months of life who had been referred to a palliative care service. [18] While not a systematic review this study does use a large sample of Australian patients. By using the Australian-modified Karnofsky Performance Status (AKPS) score to measure function, two main trajectories were determined for five main conditions. [18] Trajectory one, cancer, solid organ failure and cardiovascular disease and trajectory two, dementias and neurological disorders. Trajectory one showed a significant increase in the need for acute medical care and a rapid functional decline when the AKPS score reached 40, while trajectory two showed a prolonged, flatter trajectory, with prolonged low AKPS scores. [18] Importantly, prolonged periods of functional decline prior to rapid decline indicate a need for referral to allied health to optimise a patient’s function which includes working with patients and carers who provide physical assistance to patients. This would suggest that using the AKPS as a prognostic tool may benefit clinicians, patients, and families in preparing for service needs in the last year of life.
Planning services is a motivating factor for providing patients and families with prognostic information. Numerous tools have been developed and tested to assist in the process of prognostication in palliative care. Research is being undertaken in this area to develop validated tools to measure complexity in palliative care and to assist clinicians in identifying patients who require end of life care. [19] Many of these tools have been developed for use in cancer care but some have recently been developed for use in non-cancer life-limiting illnesses. A recent systematic review examined some common tools used in advanced cancer. [20] The authors compared the Palliative Performance Scale, the Palliative Prognostic Score, the Palliative Prognostic Index and the Glasgow Prognostic Score, which have all been externally validated. They found that despite the validation of each of tool they all vary in their clinical utility and were able to recommend the Glasgow Prognostic Score as it is a simpler tool but as reliable as the others in prognostication. [20] These findings support the recommendations made by other authors that prognostication is a process of clinical judgement. [8]
Efforts to improve care in the last year of life have resulted in the development of guidelines to support point of care decision making. [21] The Amber Care Bundle, originally developed in the UK, and now adapted by a number of Health Departments in Australia, seeks to help clinicians identify people who may be in the final months of life.
Satisfaction with care at the end of life by patients and their families has been identified in the literature as accessibility, co-ordination, and competence of health care services, quality of communication and relationships with health care providers, personalisation of care, and support for decision-making. [22,23] Participating in decision-making between clinicians and patients and their families is possible when all have an awareness of the patient’s approaching death. Supporting patients’ and families’ acceptance of the inevitability of death is acknowledged as a central part of care at the end of life. [23,24] Communicating with patients and their families is comprehensively covered in the following sections in CareSearch.
Information for GPs: Planning Care
Referral to Palliative Care
Understanding when to refer a patient to palliative care services can be dependent on a number of factors. The SPICT tool assists clinicians in identifying that a person has palliative care needs. Referral to specialist services is not always necessary and many people will not be referred to specialist services in their last year of life. Referral is often based on patient need and symptom severity or complexity rather than the presence of a particular life-limiting illness. [25] In many cases referral to specialist care is done in the later stages of a life-limiting illness. [25,26] A recent systematic review examined the evidence to support referral to specialist palliative care services in adults with advanced cancer earlier in the disease trajectory. [26] The review found that early referral may have beneficial effects on a person’s quality of life. [26]
Discontinuing Medications and Other Treatments
Patients with life limiting illnesses are often prescribed numerous medications to manage their illness and reduce the burden of symptoms. One study identified the average patient accessing palliative care services was prescribed an average of eleven separate medications per day. [27] In Australia 36 per cent people over the age of 65 are prescribed five medications or more per day. [28] In many cases, people who are recognised as being in the last year of their life continue being prescribed preventative medications, and as the trajectory of their illness reaches the final phase, a process of ‘deprescribing’ may be beneficial. [29,30] Deprescribing is the process of withdrawing 'inappropriate medication, supervised by a health care professional with the goal of managing polypharmacy and improving outcomes' [31] (p. 1262) The process of reviewing non-essential medication and deprescribing should be undertaken throughout the palliative process not just as the end of life nears. One study examining the use of preventative medications in patients with advance lung disease found that in the last twelve months of a patient’s life they continued to be prescribed medications that no longer had significant benefit to the patient. [30] This finding is supported by a systematic review of 15 studies which concluded that people with life limiting illness continue to receive preventative medications. [32] The authors acknowledge the process of deprescribing is complex. Tools have been developed to assist clinicians in deprescribing in older patients, particularly frail older adults. [33] A review examined some of these tools and identified 15 that could potentially be used to guide clinicians in reducing unnecessary medications. The researchers found only four of the studies had been tested in a clinical setting, but the quality of evidence was low. [33]
The cessation of non-essential or inappropriate medications is not the same as withdrawal of treatment or the decision not to initiate curative treatments. [29] See Care of the dying person for a discussion on withdrawing care.
Practice Implications
- Disease trajectories are useful when considering overall service planning. [17]
- Predictive tools, such as the Supportive and Palliative Care Indicators Tool (SPICT), have been found to be successful at identifying patients who have palliative care needs. [2]
- Communication about prognosis is seen by patients and their family as a high priority.
- There are validated tools available to aid prognostication
- Referral to palliative care may benefit patients.
- Ceasing non-essential medications and other treatment can be useful as a person nears the end of their life. [29]