Valuing palliative care nursing and extending the reach

Summary Background Serious life-threatening and life-limiting illnesses place an enormous burden on society and health systems. Understanding how this burden will evolve in the future is essential to inform policies that alleviate suffering and prevent health system weakening. We aimed to project the global burden of serious health-related suffering requiring palliative care until 2060 by world regions, age groups, and health conditions. Methods We projected the future burden of serious health-related suffering as defined by the Lancet Commission on Palliative Care and Pain Relief, by combining WHO mortality projections (2016–60) with estimates of physical and psychological symptom prevalence in 20 conditions most often associated with symptoms requiring palliative care. Projections were described in terms of absolute numbers and proportional change compared with the 2016 baseline data. Results were stratified by World Bank income regions and WHO geographical regions. Findings By 2060, an estimated 48 million people (47% of all deaths globally) will die with serious health-related suffering, which represents an 87% increase from 26 million people in 2016. 83% of these deaths will occur in low-income and middle-income countries. Serious health-related suffering will increase in all regions, with the largest proportional rise in low-income countries (155% increase between 2016 and 2060). Globally, serious health-related suffering will increase most rapidly among people aged 70 years or older (183% increase between 2016 and 2060). In absolute terms, it will be driven by rises in cancer deaths (16 million people, 109% increase between 2016 and 2060). The condition with the highest proportional increase in serious-related suffering will be dementia (6 million people, 264% increase between 2016 and 2060). Interpretation The burden of serious health-related suffering will almost double by 2060, with the fastest increases occurring in low-income countries, among older people, and people with dementia. Immediate global action to integrate palliative care into health systems is an ethical and economic imperative. Funding Research Challenge Fund, Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King's College London.

This paper reports a study of the perceptions of patients and nurses of palliative care and, in particular, the concept of the expert palliative nurse. Palliative care is a growing specialty and is practised globally. There is, however, limited information on patients' views about palliative care. While the idea of expertise in nursing is not new, few studies have explored the concept of the expert nurse in palliative care. Some evidence exists on palliative nurses' perceptions of their care, that it is supportive and involves maintaining therapeutic relationships with patients. Facing a terminal illness has been identified as a stressful and fearful experience that affects all aspects of life. It has also been revealed that dying patients may have unmet care needs, mainly in the areas of pain and symptom control, emotional support, and spending time alone. A phenomenological study was carried out, using in-depth interviews and thematic content analysis. A convenience sample of 22 Registered Nurses and 22 dying patients was interviewed in 1996-1997. Dying patients had a desire to maintain independence and remain in control. Palliative care nurses experienced both effective and ineffective interpersonal communication, the building of therapeutic relationships with dying patients and attempting to control patients' pain and distressing symptoms. Patients and nurses agreed that the two most important characteristics of an expert palliative nurse were interpersonal skills and qualities such as kindness, warmth, compassion and genuineness. Although the study was conducted in the United Kingdom, the findings have relevance for palliative care practice globally in terms of dependence, issues of patient choice, nurses being interpersonally skilled and building therapeutic relationships with patients.

Early palliative care improves quality of life during life-prolonging treatment for patients with cancer, but the role of nurses in facilitating the early involvement of palliative care is unclear. To conceptualize the psychosocial processes involved in the introduction and provision of palliative care by oncology nurses. A constructivist qualitative grounded theory study was conducted. A total of 20 nurses (6 staff nurses, 10 nurse practitioners, and 4 advanced practice nurses) completed semi-structured interviews. Participants were from multiple ambulatory care oncology clinics (i.e. breast, pancreatic, hematology) in a comprehensive cancer center. The core category, brokering palliative care, represented the overarching concept of the study that linked other subcategories. The other subcategories were as follows: opening the door—creating the possibility of discussing early palliative care at a time when patients show signs of being receptive to this discussion; building trust—establishing relationships with patients as a starting point for open discussions about palliative care; tackling misconceptions—addressing patients’ assumptions about palliative care as signifying death; and advocating with oncologists—seeding the process of referral by bringing patients’ concerns forward. Oncology nurses play a central role in “brokering” the introduction of early palliative care; this process is supported by their relational proximity to patients and their location “in between” the patient and the oncologist. Training all nurses in palliative care and empowering them to have proactive discussions in a collaborative practice context would allow greater access to early palliative care.