The effectiveness of specialist palliative care (SPC) programmes in enhancing the care and quality of life of patients and their families facing the problems associated with life-threatening illness has been extensively reported on.^{1,2,3,4,5,6,7,8,9,10,11,12,13} SPC provides a broad range of specialist services including specialised medical and nursing management and advice on symptom control; the provision of psychological and spiritual support; assistance with advance care planning and end-of-life care, as well as bereavement counselling and support.

The timing of referral to SPC is largely dependent on the primary physician making an estimate of a patient’s survival, as well as on the physician determining a requirement for an intervention. Referral to SPC may therefore at times be perceived as a random and discretionary default option. Studies have shown that the referral rate to SPC for patients with advanced cancer and advanced non-malignant conditions is low.^12,14 Studies have also shown that patients with cancer are referred late in the disease trajectory to SPC.^{11,15,16,17, 18, 19}

Patients with non-malignant conditions are also known to be referred late.²⁰ Despite evidence suggesting that at least one-fifth of patients with non-malignant conditions in receipt of SPC have comparable levels of symptom severity and psychosocial needs as patients with a cancer diagnosis, there is strong evidence of unmet needs for symptom control, along with unmet needs for psychosocial support and end-of-life choices for these patients.^21,22,23 

In circumstances when referrals to SPC are perceived to be ‘late’, unintended consequences can arise, including the disruption of the multidisciplinary and holistic nature of SPC service delivery.^24,25,26,27 

In a US study where almost 15% of decedents were perceived to be referred too late, lower satisfaction with hospice services from bereaved family members was reported, along with a higher rate of unmet needs.²⁷ Late referral to SPC may indicate that referral is made purely to manage death and end-of-life issues, rather than referring patients so that they may avail of the potential benefits that SPC has to offer. Delayed referral to SPC has thus come to be recognised as a potential indicator of poor quality care.²⁸

Patient- and family-related barriers 

Patient- and family-related issues are perceived to be among the greatest barriers to SPC referral.^29,30 A national poll conducted by the American Medical Association found that 35% of respondents were not familiar with the terms ‘hospice’ or ‘palliative care’³¹ and it has also been shown that a significant proportion of patients appear to misunderstand options in end-of-life care.³² 

Patients and families may also have a negative perception of the term palliative care,¹³ or negative image of palliative care units.²⁹ The desire for continued life-prolonging treatments often contributes to insufficient preparation for changes in a patient’s condition, resulting in delays in SPC referral. 

Inadequate advance discussion about preferred choices for end-of-life care may also result in patient and family unwillingness to use hospice services.³⁰ Patients and families often have difficulty in making the transition to hospice care and may wish to continue to be cared for by familiar doctors and nurses in a secure and familiar environment and thus may not want to be referred to SPC or transferred to a palliative care unit.²⁹

Misconception that palliative care shortens life, as well as misconceptions over opioids^33,34 and misconceptions concerning the nature of palliative care (ie. confusion with euthanasia)^32,35 can also result in existing palliative care resources not being used appropriately. 

Healthcare profession-related barriers 

Healthcare professionals are among the major barriers to SPC referral. Traditional physician training focuses on curative measures and on prolonging life; the lack of acceptance by physicians of a patient’s terminal diagnosis and impending death and subsequent delay in termination of anticancer treatments, along with difficulty in accepting the transition from curative care to a more palliative approach, may partly explain the perceived delay by physicians in referring patients to SPC.^30,35,36 

Physician prediction of survival is central to clinical decision-making towards the end of life and is vital in order to provide patients and families with information for goal setting, including priorities and expectations of care.^37,38 Physicians, however, have been shown to overestimate prognoses by up to a factor of five.³⁹ Undue optimism concerning survival prospects may contribute to delayed referrals to SPC and thus negatively impact on patient care towards the end of life. 

Palliative care is often interpreted as the end-stage of a sequential model of care or end-of-life care, with referral often viewed as appropriate only when all disease-modifying treatment is ceased. One of the key barriers therefore to SPC referral is based on this preconception that palliative care can only be provided at the end of life, once all medical and oncological options have been exhausted.⁴⁰ Referral to palliative care is often thus interpreted as ‘giving up’ on anticancer and medical treatments. 

‘Palliative care’ as a barrier to referral 

There appears to be persistent biases associated with the term ‘palliative care’ that prevent early referral;^41,42,43 it is often perceived to decrease hope and to cause considerable distress among patients and families.⁴¹ In a US study the change from ‘palliative care’ to ‘supportive care’ resulted in more inpatient referrals, along with earlier outpatient referrals.⁴³ Median survival time (from the time of diagnosis) was also shown to be longer by a month and a half following the name change.⁴³ 

A number of specific barriers to SPC referral for non-malignant conditions have been recognised, with the unpredictable disease trajectory reported as the most important barrier.¹ The lack of defined referral criteria for non-cancer patients, the perceived lack of expertise in non-malignant conditions by SPC providers and limited resources have also been considered to be important barriers to referral.⁴⁴ 

Enablers to referral to SPC

Factors that enable and facilitate referral to SPC have also been identified including educating consumers about hospices and the services provided and empowering them to request information on hospice care from their primary physician.^9,36,45 Other enablers have been identified relating to healthcare professionals, including physicians’ practice styles, with one study showing that physicians were more likely to refer to palliative care and have a better understanding of palliative care if their training and continuing medical education included end-of-life care issues.³⁶ 

Benefits of early SPC referral

Recently, a number of studies have been conducted in order to more accurately define the benefits of palliative care referral earlier in the disease trajectory.^46,47,48,49 A study of ambulatory patients with newly diagnosed metastatic non-small cell lung cancer examining the effect of early referral to SPC on patient-reported outcomes and quality of end-of-life care reported that patients assigned to early palliative care had significantly higher quality of life scores than those assigned to standard care.⁴⁷ A survival advantage was also reported.⁴⁷ In a further recent cluster randomised-controlled trial of 461 patients with metastatic cancer, early palliative care intervention was shown to improve patient quality of life, symptom control and satisfaction with care compared to patients receiving routine cancer care.⁴⁹ Evidence from these studies also suggests that early palliative care intervention minimises aggressive measures towards the end-of-life and minimises caregiver distress.^48,50 

Recent studies suggest that early referral to SPC can improve all measurable outcomes for patients by as much as, or more than, new and expensive treatments.^46,47,48,49

Current practice

An integrated care model with palliative care services implemented in the early stages of patients’ disease trajectory, alongside medical oncology input and optimum medical management of chronic illness, is currently promoted.⁴³ Attempts have been made to move away from the traditional ‘curative approach initially followed by a palliative care approach’ to what has been termed a ‘mixed management model’, whereby the administration of disease-modifying treatments runs concurrently with the implementation of palliative care services.^10,51 Disease-modifying therapies should be incorporated together with palliative care concepts of symptom control, advanced care planning and family support from the time of diagnosis of incurability until death, in a parallel, ongoing fashion.⁵²

In recent years, a number of professional organisations, including the WHO, ASCO and ESMO have published guidelines recommending the incorporation of SPC early into standard oncology care.^53,54,55 International health policy has also acknowledged that SPC services should be available to patients with a diagnosis other then cancer.^{20,56,57,58,59,60} Several countries have thus incorporated disease-specific guidelines highlighting the role of specialist palliative care in the care of patients with non-malignant conditions and encouraging the integration of these services.^{20,56,57,58,59,60} 

Future direction

Not all patients with advanced cancer or advanced illness will require SPC input, but it is important for those who do that their needs are identified and they are offered the most appropriate form of care at the most appropriate time point. As long as palliative care is viewed as terminal care or as end-of-life care, proposals to shift palliative care service delivery to a more timely point is likely to be met with resistance from healthcare professionals, along with patients and families.

Increased education and knowledge of SPC and hospice care among healthcare providers, patients, families and caregivers is greatly needed. Further education is warranted in particular on the role of palliative care services and on the proposed advantages to the early integration of these services. 

Further training of healthcare professionals on how to introduce palliative care to patients and caregivers, along with training on the identification of appropriate times to patient referral is also needed. A collaborative approach and the development of positive links and closer relationships between palliative care teams, hospital specialties and community services could also facilitate timelier referral and more appropriate access to palliative care.⁵⁹

In order to restore the balance between a physician’s obligation to prolong life and the obligation to relieve patient suffering, a peaceful death needs to be acknowledged as a legitimate goal of medicine and as an integral part of a physician’s responsibilities.³⁵ Medical school curricula need to develop approaches aimed at improving acceptance and awareness of palliative care, along with incorporating programmes aimed at improving physician-patient communication.³⁵

Improving patient quality of life remains a high-priority, patient-centred goal. Palliative care should continue to be promoted as a service that not only offers improvements in symptom control and quality of life in patients with advanced illness, but also as a service that should be integrated early, including while patients continue to receive anticancer treatment. Patients with advanced illness should be referred to SPC not when actively dying but when there is a need for a palliative intervention. Whether the intervention is needed one day or one month before a patients’ death should be irrelevant. 

Referral should be based on the complexity of the need or problem, which can vary for individuals throughout the illness, and should be based on whether current healthcare professionals can accommodate these needs, rather than on functional decline or simply disease progression.⁶¹ In such a context, palliative care services would be utilised intermittently, as the needs of the patient dictate.⁶¹ With enhanced integration, ultimately the quality of life of patients with advanced illness will be greatly improved. 

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