Table 3 Thematic representation of key characteristics of a palliative approach

Recognition of diverse illness trajectories [2, 8–10, 13, 15, 16, 19, 23, 25, 30, 34, 51–57, 59, 61–63, 65, 67–98]

“Neurological diseases present and progress with great clinical variation. In contrast to patients in many other areas in medicine, neurological patients frequently live many years while developing cumulative physical and cognitive disabilities. As a result, patients living with neurological disease cope with decreasing quality of life before reaching the terminal stage of their illness” [2].

“The illness trajectory of patients dying with chronic kidney disease differs from that of patients with cancer. There are also unique end of life issues, such as the withdrawal of dialysis, that are specific to these patients. The existence of different pathways to death has important implications for health care delivery; end of life issues that are important to chronic kidney disease patients may differ from patients dying from other illnesses” [10].

Importance of identifying where people are on their illness trajectory [2, 8–10, 13, 15, 16, 19, 23, 25, 30, 34, 51–57, 59–61, 63, 64, 67–71, 74–79, 81, 82, 84, 85, 87–91, 93, 94, 96–103]

“Communication of prognosis and discussions related to planning for future death are lacking in the routine care of CKD patients…. Answering yes to a simple question “Would you be surprised if this patient died with the next year?” should also prompt the nephrology team to initiate these discussions” [10].

The challenge of prognostication [2, 9, 10, 13, 16, 23, 34, 51–57, 59, 60, 63, 65, 67, 68, 70, 72, 75–78, 84–87, 90, 92, 95, 97, 101, 102, 104–110]

“…determining the trajectory of an individual’s illness is an inaccurate science, thereby making lane changes difficult…While nurses in the study experienced physicians as “waffling” when they were not specific about prognostication, the literature suggests that, because of the unreliability of prognostic judgements, physicians may opt to provide a range of survival estimates. What makes prognostication even more difficult within the context of acute medical units is the range of patients that are cared for and the manner in which their symptoms present” [102].

Adaptation throughout all aspects of the care process, including:

a) individualized assessment of care needs [2, 8–10, 13, 16, 19, 23, 25, 27, 30, 34, 51–57, 59–65, 67–73, 75–81, 83–85, 87–101, 103, 104, 106–108, 110–121]

“If end of life care does not take into account the unique circumstances and needs of people with dementia, it is likely to fail them” [8].

“Medical visits should begin with an assessment of the patient’s agenda and issues, including immediate concerns and threats to quality of life” [92].

b) symptom management [2, 8–10, 13, 16, 19, 23, 25, 27, 34, 51–57, 59, 61–63, 67–70, 72–74, 77–82, 85–88, 90, 91, 93, 94, 96–99, 101, 103, 105, 106, 108, 110, 112–116, 118, 120–126]

“Effective symptom management may require multiple therapeutic components (pharmacological and nonpharmacological) or involvement of multiple disciplines. This approach is a foundation of geriatrics and is based on the demonstrated effectiveness of programs of care that provide assessment and targeted remediation of multiple factors in preventing falls and delirium” [8].

c) communication and care planning (goals of care, advance care planning, anticipatory care planning) [8–10, 13, 16, 19, 23, 25, 27, 30, 34, 51–57, 59–63, 65, 67–105, 107, 109–120, 122, 123, 125, 127]

“Checking the patient’s and family members’ understanding and goals should be an ongoing process during the course of the disease and will facilitate the process of advance care planning” [51].

“Important factors that determine when the patient and family are ready to discuss end of life issues include coping skills, depression and anxiety, cultural issues, use of functional assistive devices, and physiologic status, among others” [13].

Patient, family, and caregivers as partners in care [8–10, 13, 16, 19, 25, 30, 34, 51–57, 59–65, 67–70, 72–82, 84–87, 89–95, 97, 98, 100, 102, 104–108, 111–116, 118–123, 126, 128]

“Symptom self-management support involves helping patients and their families acquire the skills and confidence to manage their illness. Education and support can also help patients and families weather the variable, day-to-day […] nature of common symptoms and their effect on ADLs as well as to prepare for an emergency” [16].

“To minimize hospitalizations, she is willing to participate in the distance-monitoring program offered by the local home health agency. The nurse will monitor daily weights, blood pressure, and pulse, and communicate changes to the NP so the medication regimen can be promptly adjusted. The agency also provides case management. In this way, Mrs. C’s complex needs can be continuously assessed and promptly addressed. The NP also offers a referral to a licensed clinical social worker who can provide support and counseling to her and her family” [54].

“This project aims to develop a model of integrated care involving partnership between older adults, their carers, and health professionals though a system of mentorship and information technology (IT) provision. The intent is to assist older people with chronic respiratory conditions to enjoy enhanced self-efficacy and quality of life by interactions with a community nurse mentor, coupled with the use of a technology-supported system of self-management” [9].

Models/systems of care for a palliative approach:

a) “early” palliative care [23, 52, 57]

“A palliative approach, also referred to as simultaneous care, acknowledges the likelihood of gradual transition, emphasizing quality of life considerations during the active treatment phase. It recognizes that treatment goals will evolve from seeking a cure, to control of disease and complications, maintaining physical functioning and quality of life, and ultimately to symptom control …. Early introduction of the palliative care health professionals as part of the multi-disciplinary treatment team can facilitate the transition from curative to palliative treatment. It is important that the palliative care professionals are seen as an integral part of the treatment team, which will enhance the sense of continuity of care and allay any fears of abandonment” [57].

b) integration into generalist practice [15, 19, 27, 34, 61–64, 78, 83, 85, 88, 89, 92, 94, 99–101, 103, 107, 115, 117–119, 126, 129]

“For nurses, the GSF appeared to provide structure, authority and permission to arrange both formal meetings with general practitioners and informal communication opportunities that facilitated the achievement of professional and patient care objectives… Systems were described to discuss patients within the primary health care team to ensure that people were aware of patients and that they were referred at an ‘appropriate’ time” [103].

c) disease/condition-specific models for care delivery [2, 8–10, 13, 16, 51, 53, 55, 56, 59, 65, 68, 91, 93, 96, 97, 111]

“The study’s primary finding was that there is a need to ‘dementia proof’ end of life care for people with dementia. If end of life care does not take into account the unique circumstances and needs of people with dementia, it is likely to fail them. This requires service providers and care professionals to ensure that the environments in which people live and die – be they at home, in a care home, in NHS continuing care or in a general hospital – do three things: use knowledge of dementia to identify and respond to physical care needs; go beyond task focused care; and prioritise planning and communication with the family” [8].

“Patients with heart failure need comprehensive palliation, regardless of disease stage or need for aggressive therapy. Collaborative, interdisciplinary care provided by the joint teams have benefited patients, families and staff by attending to symptoms, establishing goals of care, and planning for life outside the hospital” [96].

“It seems equally evident that the respiratory community has much to learn from the palliative care community about the breadth of service provision required. We suggest that only by working together and educating each other can we provide the expertise to respond to the above issues and support patients/carers across the respiratory–palliative care spectrum” [53].