Barriers to accessing palliative care: A review of the literature

Abstract

The aim was to review factors affecting patients' access to palliative care. First, the benefits of palliative care for comprehensive care of patients and their families are identified. Despite these benefits, universal standards for access are lacking and referral typically occurs later than is recommended, limiting access to best practice care. Factors relating to access are reviewed in detail. They are grouped conceptually, combining those related to organisational factors, patient and family-related issues, which include characteristics of patients, preferences for curative care, and willingness to discuss and participate in palliative care, and factors attributed to physicians and health professionals, such as communication styles, sense of efficacy, perceptions of patient readiness, and knowledge of palliative care. Despite the accumulated evidence, the existing studies share methodological weaknesses, which are (1) Yet referrals to PC can still be untimely, poorly managed, or delayed. An earlier review of the literature has identified the problems and issues associated with accessing PC.(2) The aim of this paper is to review the literature published in the decade since, addressing factors associated with access to PC services and to suggest aspects of access to PC requiring further investigation. Referral to palliative careMany studies have demonstrated that earlier access to palliative care may have positive benefits, addressing issues such as anticipatory grief and loss throughout the trajectory, facilitating improved symptom management, improved mood, and overall quality of life. (3,4) Despite the demonstrated benefits, PC use is often less than optimal and opportunities are frequently missed. Table 1.Insert Table 1 about here Factors affecting access to palliative care servicesIn order to conceptualise the many interrelated factors that have been identified as affecting access to PC services, a theoretical model was devised (Figure 1). Patients are considered as part of a family system, including carers and other family members. Health care teams are spearheaded by treating physicians and are part of health organisations.Communication factors between patients and families and health care teams create the foundation on which relationships are formed. There is a broader context: the wider health care system and social and cultural factors are important influences on access to PC services.

Caregivers' perceptions of illness severity and end of life service utilization in advanced heart failure

“…6 Our results indicate that the majority of caregiver participants did not comprehend the severity of the patient’s heart failure or recognize heart failure as a terminal disease. Clinicians need to be more forthcoming when describing heart failure severity and the terminal nature of the disease.…”

“…Late or missed referrals to palliative care and end-of-life services are commonly reported in the literature across terminal illnesses 6 ; however, HF caregivers have been found to be significantly less likely to seek services despite unmet needs 8 . Delayed referrals prohibit caregivers from accessing the full range of services offered with palliative care and hospice, and also increase the likelihood of dying in the hospital.…”

“…25 Caregiver needs are secondary to patient symptom management and quality of life maintenance. 6 In order to establish a family-centered approach to palliative and end-of-life services, caregiver needs will have to become a priority. 26 Future studies should investigate how caregiver perceptions of HF severity and terminality can be linked to the acquisition and utilization of supportive and end-of-life services and the subsequent well-being of the caregiver during the bereavement period.…”

“…Since 2005, clinical guidelines have suggested palliative care, advance care planning, and end-of-life services for this population; 2 however, these services are not frequently offered or when offered, refused by the patients and caregivers. 5,6 Many caregivers of patients with HF have reported the caregiving experience to be much worse than they expected, yet, HF caregivers remain reluctant to seek support, and often choose to forego palliative care and end-of-life services despite unmet physical needs. 7 Although the basis for this apparent contradiction is unknown, there are several barriers to end-of-life conversations in HF that have been suggested in the literature including: patient/caregiver issues, healthcare provider difficulties in beginning the conversation, disease-specific unpredictability and organizational issues.…”

Analysis of common barriers to rural patients utilizing hospice and palliative care services

“…This can delay or even defer access to care services if these providers must defer HC referral to a physician. At this time, only physicians can certify that a patient has a terminal illness with less than 6 months to live and admit the patient into HC; they act as the gatekeeper to these services (Artnak et al., ; Campbell et al., ; Love & Liversage, ; Lynch, ). PC is billed under Medicare Part B (medical insurance) benefits and does not have the same physician certification restriction; PC services can be billed by providers similar to traditional medical care services.…”