What makes palliative care needs “complex”? A multisite sequential explanatory mixed methods study of patients referred for specialist palliative care

Abstract

Background Specialist palliative care (SPC) providers tend to use the term ‘complex’ to refer to the needs of patients who require SPC. However, little is known about complex needs on first referral to a SPC service. We examined which needs are present and sought the perspectives of healthcare professionals on the complexity of need on referral to a hospice service. Methods Multi-site sequential explanatory mixed method study consisting of a case-note review and focus groups with healthcare professionals in four UK hospices. Results Documentation relating to 239 new patient referrals to hospice was reviewed; and focus groups involving 22 healthcare professionals conducted. Most patients had two or more needs documented on referral (96%); and needs were recorded across two or more domains for 62%. Physical needs were recorded for 91% of patients; psychological needs were recorded for 59%. Spiritual needs were rarely documented. Referral forms were considered limited for capturing complex needs. Referrals were perceived to be influenced by the experience and confidence of the referrer and the local resource available to meet palliative care needs directly. Conclusions Complexity was hard to detail or to objectively define on referral documentation alone. It appeared to be a term used to describe patients whom primary or secondary care providers felt needed SPC knowledge or support to meet their needs. Hospices need to provide greater clarity regarding who should be referred, when and for what purpose. Education and training in palliative care for primary care nurses and doctors and hospital clinicians could reduce the need for referral and help ensure that hospices are available to those most in need of SPC input.

The impact of poverty and deprivation at the end of life: a critical review

“… 35 There is certainly evidence that, at end-of-life, current and lifetime experiences of social inequities can compound suffering. 35 , 36 As Finucane and colleagues 37 argue, social needs relate to factors such as social isolation, caring responsibilities, housing concerns, or family/carer support needs, discussed further towards the end of this article.…”

Timely short-term specialized palliative care service intervention for older people with frailty and their family carers in primary care: Development and modelling of the frailty+ intervention using theory of change

“… 8 , 9 Although there is no standard definition of complex needs in palliative care, it is recognized that they can affect different domains, that is, physical, psychological, social or spiritual/existential. 10 Despite the fact that the need for timely integration of services has been recognized, research shows that these services are often initiated only shortly before death (e.g. the median number of days ranged from 15 in Belgium to 30 in Italy in a four-country comparison).…”

The Multiple Mediating Effects of Perceived Social Support and Spiritual Well-being on the Relationship Between Spiritual Needs and Quality of Life Among Patients With Advanced Cancer

“…Spiritual needs are common in cancer patients [13] and have been demonstrated to be correlated with cancer patients' QoL [14,15]. Unmet spiritual needs increase the physical and psychological symptoms of patients and reduce the effect of treatment and rehabilitation, leading to adverse prognoses such as depressive symptoms [15].…”

“…Unmet spiritual needs increase the physical and psychological symptoms of patients and reduce the effect of treatment and rehabilitation, leading to adverse prognoses such as depressive symptoms [15]. In addition, failure to meet spiritual needs is associated with impaired physical, emotional, psychological, social, and spiritual well-being in cancer patients [14]. A literature review suggested that the spiritual needs of cancer patients increase as a disease progresses [16] and that most patients report less spiritual care provided by health care providers than desired or even an unavailability of spiritual care [14,15,17].…”

“…In addition, failure to meet spiritual needs is associated with impaired physical, emotional, psychological, social, and spiritual well-being in cancer patients [14]. A literature review suggested that the spiritual needs of cancer patients increase as a disease progresses [16] and that most patients report less spiritual care provided by health care providers than desired or even an unavailability of spiritual care [14,15,17]. Therefore, providing spiritual care to meet spiritual needs in this population is crucial.…”