Table 3.

Included studies.

Citation and Country	Participants and measurement tools used (including need domains assessed within tools)	Design	Relevant/(Total) Sample	Perspective of Reported Needs	Summary of findings relating to needs
Amblàs-Novellas et al., 20 Spain	Patients with a positive NECPAL CCOMS-ICO© tool score, indicating they might benefit from a palliative care approach. Recruited from mixed community settings.	Cross-sectional	377 (782)	Researchers, based on the prevalence of prognostic indicators.	This paper compares those with advanced chronic conditions identified as having palliative care needs across three archetypal end-of-life trajectories: acute (typically cancer), intermittent (typically organ failure) and gradual dwindling (typically dementia or frailty), exploring their physical symptoms. The large number of identified patients with advanced chronic conditions but with no advanced disease criteria reveals that there is a real and not previously well-described cohort of people with advanced frailty and palliative care needs.
Beach et al., 21 United States of America	Community-dwelling participants from the National Health and Aging Trends Study (NHATS) with functional limitation for at least one of the following: (Instrumental/) Activities of Daily Living/Mobility	Case control	2645 (4024)	Older person/a proxy if older person unable to respond	High need, high care older adults report much higher levels of adverse consequences from unmet needs for Activities of Daily Living and mobility assistance compared with low need patients, despite more disability compensatory efforts, including environmental modifications, mobility device use, paid caregiver use, and larger informal helper networks.
Bone et al., 22 United Kingdom	Decedents of those aged ⩾65 with advanced disease receiving palliative care prior to death in South England (from two postal surveys). EQ5D tool covering Physical (pain), Practical, and Psychological (anxiety) domains.	Survey	96 (688)	Official death registrations and data collected from the decedent’s family member	Those with a primary diagnosis of respiratory disease, and with multiple comorbidities were more likely to have frequent end of life emergency department attendances. Family members revealed concerns around care continuity, confidence in care and support provided, responsiveness of staff to changing need, and untimely discharge with poor coordination leading to readmission.
Brandt et al., 23 The Netherlands	Nursing Home (NH) residents with a life expectancy of ⩽6 weeks, or admitted to long term care, recruited from 16 Nursing Homes. The Palliative care Outcome Scale (POS) was used to assess the key domains in the provision of palliative care (all domains). The Global Deterioration Scale was used to assess for dementia.	Cross-sectional	328 (471)	Proxy – Nursing Home Staff	This is the first study that describes the quality of palliative care provided in the last days of the life of nursing home residents who were mainly noncancer patients. The usefulness of the POS tool was evaluated in a NH population including patients with dementia. ‘Non-scores’ for added POS items: ‘not applicable’ and ‘unknown’ were often found in the POS-items patient anxiety, support, life worthwhile, and self-worth. It was also frequently unknown whether the patient’s illness-related personal affairs had been addressed.
Chan and Pang, 24 Hong Kong (China)	Cognitively-able long-term care residents aged >65. The Cumulative Illness Rating Scale (CIRS) was used to assess physical needs. The Quality-of-Life Concerns in the End-of-Life Questionnaire (QOLC-E) tool was used to assess across all five need domains.	Cross-sectional	164 (287)	Older People	Findings from the Quality-of-Life Concerns in the End-of-Life Questionnaire (QOLC-E) yielded three positive (value of life, food-related concerns, and care and support) and negative (physical discomfort, negative emotions, and existential distress) subscales. Regarding QOL concerns, members of the frail group were generally less satisfied with their QOL than their non-frail counterparts. The differences were more apparent in the three negative subscales. Considerable numbers were uncertain about their end-of life care preferences, and they preferred their physician to be their surrogate.
Chochinov et al., 25 Canada	Frail elderly people, defined as: (1) being over 80 years of age; (2) residing in a personal care home (PCH); and (3) requiring assistance with two or more basic activities of daily living; and (4) having a Cognitive Performance Scale (CPS) of 0–3 (i.e. none to mild cognitive decline). Numerous tools were used: Patient Dignity Inventory (PDI; all domains), Multidimensional Scale of Perceived Social Support (MSPSS; Social, Practical), Revised Edmonton Symptom Assessment Scale (ESAS-R; Physical, Psychological), Structured Interview of Symptoms and Concerns (SISC; Physical, Psychological, Spiritual), Herth Hope Index [HHI] (Spiritual), Spiritual Survey (Spiritual), The Katz Index of Daily Basic Living (Physical), and Hospital Anxiety Depression Scale (HADS; Psychological).	Cross-sectional Part of a prospective, multi-site approach	102 (404)	Participants of the study – including a frail elderly group	The frail elderly group reported the highest prevalence of moderate to extreme desire for death, the lowest level of hope, and the most physical dependencies. Relative to other groups, the frail elderly felt less supported by family, friends or a significant other. While the elderly are not typically described as ‘terminally ill’, 42% of them died over the course of the study. Relative to the other groups, they are the most isolated and report the lowest social support from family, friends or a significant other. They reported feeling the least hope, in the absence of significant worry about the future. Along with reporting the highest desire for death, in the absence of suicidal ideation or disproportionate psychological distress, a picture emerges of elderly residents being at relative ease compared to other study populations. They are not particularly worried or frightened of the future; with an endorsement of desire for death perhaps indicative of a readiness to die.
Gomez-Batiste et al., 26 Spain	Patients identified by a doctor or nurse as suffering from at least one advanced chronic condition were recruited from a range of care settings. The NECPAL tool (all domains) was used.	Cross-sectional	785 (1064)	Health professionals	NECPAL+ patients are mainly among the elderly population which is often living at home or in NH. Advanced frailty and dementia are the most common clinical conditions, followed by cancer and organ failure. There are higher proportions of women and non-cancer patients. All the individuals identified would benefit from a palliative care approach.
Goodridge et al., 27 Canada	14 registered nurses and eight healthcare aides who had provided care within the last 72 hours before a long-term care resident’s death and four family members who had visited within the same time frame. These interviews relating to 15 resident deaths.	Qualitative interviews	26 (26)	Interviews with decedents’ family members, registered nurses, and health care assistants	Caring behaviours of staff were central to the dying experience and encompassed a wide range of activities. Professional activities, such as assessment and coordination of care, were not readily evident to either families or health care assistants, except in their absence, but were recognised by Research Nurses to be a critical component of end of life (EOL) care. There was little question about the importance of high-quality physical EOL care to family members, registered nurses, and health care assistants. Ensuring a resident was as physically comfortable as possible was the overriding goal of staff, but deficits in dyspnoea management suggest a role for additional staff education. Emotional support of both the resident and family was cited by all participants as key to quality EOL care.
Kayser-Jones, 28 United States of America	Nursing home residents’ care was observed from when they were identified as being terminally ill until they died. *Findings are drawn from same research undertaken in Kayser-Jones et al. 2003.	Qualitative multi-method (participant observation, in-depth interviews, and event analysis)	189 (189)	Older people, their families, and nursing home staff	Prominent factors that influenced the experience of dying were lack of attention to cultural needs, cognitive status, inadequate staffing, and inappropriate and inadequate communication between health care providers and nursing home residents and their families.
Kayser-Jones et al., 29 United States of America	Nursing home residents’ care was observed from when they were identified as being terminally ill until they died. *Findings are drawn from same research undertaken in Kayser-Jones 2002.	Qualitative multi-method (participant observation, in-depth interviews, and event analysis)	189 (189)	Older people, their families, and nursing home staff	The physical environment was not conducive to end-of-life care. Rooms were crowded, there was little privacy, and the facilities were noisy. Often, residents did not receive basic care, such as bathing, oral hygiene, adequate food and fluids, and repositioning. Environmental factors, physical and organisational, influenced end-of-life care. Privacy and space, necessary for residents to have time with their families and bring closure to their lives, emerged as important themes. Inadequate staffing and lack of supervision were critical factors in the care of the residents. In the weeks and months before death, many residents were hungry and thirsty, and their relatives would not be fed. More than half the residents had pressure ulcers.
Kendall et al., 30 United Kingdom	All the patients within the 8 synthesised studies included in this paper were living in community settings and were considered to be at risk of dying within the next 12 months by the clinicians who helped enrol them into the studies. The ‘global clinical measure’ tool for frailty (Rockwood et al., 2005; Physical) was used.	Qualitative synthesis (two studies using serial in-depth interviews)	13 [from Lloyd study]; 25 [from Worth study] (440)	Older people, family care-giver, health professionals	Frail, older people, and their family caregivers and service providers all struggled to recall exactly when their health began to deteriorate. Patients focused on staying as well as possible and maintaining autonomy in the face of increasing dependence. They expressed frustration at their declining capacities. Frailty often becomes a way of life, and a new normal and little support is accessed from specialist palliative care services.
Kozlov et al., 31 United States of America	Adults aged ⩾60 years living in community settings receiving services at 1 of 5 senior centres located in Brooklyn and Staten Island, New York. Medical comorbidity data were collected using a 22-item medical condition checklist 32 (Physical). A tool for community-based palliative care screening was also used 33 (Physical, Social, Practical, Psychological).	Cross-sectional	63 (237)	Older people	The rate of unmet palliative care needs in community-based older adults who attend senior centre events was high and living arrangement and education level were both correlates of unmet palliative care needs. Having less education, higher rates of medical comorbidities and living alone were associated with screening positive for unmet palliative care needs.
Kramer, 34 United States of America	Elders with advanced chronic disease, eligible for nursing home level care, Medicaid recipients, and considered likely to die within 6 months were selected. Family and care team members for the elder were also participants. Survey reports of the needs addressed by social workers for 120 deceased elders were collected. Five focus groups with interdisciplinary team members were conducted. In-depth interviews with 14 elders and 10 of their family caregivers were also conducted. Author constructed end of life survey items were included, presented in the paper.	Mixed methods (convergent design)	144 (144)	Older people, their family, team members and social workers.	Social workers engaged in efforts to address elder and family caregiver psychological and emotional responses at the end of life and had a high degree of involvement in grief and bereavement, spiritual issues, and funeral planning. Social workers frequently addressed specific psychological issues, grief and bereavement, funeral planning, and spiritual issues with the elders they served.
Kricke et al., 35 United States of America	Community-dwelling in the last month of life participants from the National Health and Aging Trends Study (NHATS) who had a proxy who was not an employee of the setting where the individual died. Participants had complete chronic condition data reported before death and received care in the last month of life with a proxy rating the overall quality of that care for the end of life.	Cross-sectional	477 (477)	Proxies of older people with multiple chronic conditions	End of life care domains of coordination, symptom management, shared decision making, respect, and spiritual and emotional support. were assessed for older adults living with multiple chronic conditions (MCC). A little over half of decedents’ proxies rated overall end of life care quality as ‘excellent’, suggesting a need to improve care for dying older adults with MCC. All domains listed, except symptom management, mattered when rating overall end-of-life care quality for older adults with MCC Findings suggest that dying older adults with MCC may prioritise psychosocial over physiological needs.
Lambotte et al., 36 Belgium	Community-dwelling older adults aged ⩾60 years in need of assistance who both did and did not receive and received no care or support. The Comprehensive Frailty Assessment Instrument (CFAI; Physical, Psychological, Social, Practical).	Cross-sectional	12,481 (12,481)	Older people	Significant differences were found when comparing the different combinations of care use to frailty levels in community-dwelling older adults in need of assistance. Older adults who were more likely to receive care from family (both nuclear and extended) in combination with care from all types of formal care providers had higher proportions of psychological frailty and the highest proportions of physical frailty. Older adults in need of assistance who were more likely to receive care only from all types of formal care providers had higher proportions of physical frailty and were even most psychologically frail. Older adults in need of assistance who were more likely to receive informal care from nuclear family only were more socially frail than expected, while those receiving little or no care from different types of informal caregivers had higher proportions of social frailty.
Lee et al., 37 South Korea	Community-dwelling aged ⩾40 people received continuous home care nursing throughout the stable and final death stages and diagnosed with a non-cancerous disease.	Survey	115 (115)	Home healthcare nurse specialists	The care needs of ‘coordination among family or relatives’ and ‘support for fundamental need’ were more important in the stable stage prior to death than in the near-death stage. ‘Loss, grief care’ was more important in the near-death stage than in the stable stage. The care need ‘physical symptoms management’ was the most difficult to meet in both stages. A lower Palliative Performance Scale score was associated with a higher level of care need, particularly in the ‘management of physical symptoms’ and ‘psychological support’ realms in the stable stage and in the ‘coordination among family or relatives’ realm in both stages.
Marcucci et al., 38 Brazil	Adults (18 years or older) living in a community setting, achieving four or more points on the Palliative Care Screening Tool (PCST), being registered in the Estratégia Saúde da Família (ESF) programme, and being willing to complete the Research Consent Form and assessment protocol. The Palliative Care Outcome Scale (POS) was used to assess the key domains in the provision of palliative care (all domains). The Edmonton Symptom Assessment Scale (ESAS; Physical, Psychological) and Karnofsky Performance Scale (KPS; Physical) tools were also used.	Cross- sectional	69 (238)	Community teams were asked to report all patients with a potential need for palliative care, and patients were assessed with structured questionnaires.	Dementia and Cerebrovascular disease were the most frequent conditions of patients identified as needing palliative care. Consequently, most patients had low functional status. Most patients did not have home visits from any health care team member in the month prior to the interview. Assessment of non-physical symptoms like well-being, depression, and anxiety was also limited due to cognitive impairment and the subsequent difficulties in conducting evaluation with the chosen tools. Moreover, no included patients received psychological therapy, and very few had access to multi-professional support.
Mason et al., 39 United Kingdom	People with ⩾2 advanced illnesses in a larger multicentre study on care coordination experiences who are considered to be in the last year of life.	Qualitative interviews	37 (56)	Patients and family	Patient experiences of multimorbidity near the end of life were mostly of progressive physical decline with increasingly frequent episodes of acute deterioration, multiple changing medications, progressive loss of autonomy, poor or inconsistent communication, and inadequate continuity of care from numerous but disconnected services. Consequently, the physical and emotional burden of managing care usually fell on the patient or a family carer. Lacking a coherent framework to articulate their experiences and problems, patients and carers tended to interpret their deteriorating health and its consequences as a case of ‘getting old’ rather than being progressively more unwell. As a result, they sometimes failed to seek the right help and support or did not receive it from care systems not configured to respond to their needs. For these people dying from multiple advanced conditions, the daily burdens were great, and crises were common yet there was little evidence of proactive and coordinated services delivered as part of a person-centred palliative care approach.
McVey et al., 40 Australia	Residential care home residents aged >18 years classified as needing ‘high-level’ care according to the Residential Classification Scale.	Qualitative interviews	93 (93)	Care home residents and care home staff	The overarching theme from care home resident data was transitioning towards the end of life. Transitioning towards the end of life was seen as a natural progression in life. Embedded within this theme are subthemes: (i) Why am I here?; (ii) Adjusting to life in a mixed-level facility; and (iii) Uncertainty about the future.
Nicholson et al., 41 United Kingdom	Patients aged 82–92 years receiving care from a home care service for older people with palliative care needs, living with progressive illness and/or frailty, thought to be in the last year of their life. Participants were included where data was recorded for complete episodes of care between January 2016 and August 2017. The Integrated Palliative Care Outcome Scale (IPOS; all domains), Palliative Care Phase of Illness (POI), and Australia-modified Karnofsky Performance Status (AKPS; Physical) tools were used.	Cross-sectional	815 (2069)	Routinely collected patient data	Standard care patients more frequently reported pain, nausea, vomiting, constipation, anxiety, and family concern and Bromley Care Coordination patients more frequently reported mobility concerns. Older people with multimorbidity, approaching the end of life, have considerable palliative care needs. The expectations were for differences that are more widespread across the two groups since the IPOS tool was developed around the main palliative care concerns of people (including older people) with advanced single diseases.
Österlind et al., 42 Sweden	A Nursing Home resident for a maximum period of 6 months before the first interview and fully aware of their orientation in relation to time, space and self, that is without cognitive impairment.	Qualitative interviews	6 (6)	Older people	The narratives revealed that life in a nursing home involved living with a feeling of loneliness in an unfamiliar place. Despite differences in background and health status, the older people described daily life in a nursing home in a similar fashion. They missed their former independence and described how possibilities to affect their everyday lives in the new environment were limited. Daily life was characterised as waiting for death, and as subordinating oneself to the values and norms of the staff while at the same time striving to keep their courage up. They experienced few opportunities to discuss their thoughts on life and death, including preparations for passing away. The study shows that conversation and socialising in everyday life can have an identity-promoting function and promote the feeling of meaningfulness.
Parker et al., 43 Australia	Nursing home residents who clinicians would not be surprised if they died within a few months and who had at least one of the following: 1. Multiple admissions to an acute care hospital over the past 6 months, where treatment goals have been palliative not curative; 2. Documented continued trajectory of decline in functional status; 3. Documented recent impaired nutritional status related to progression of the primary disease or other medical condition; 4. An unanticipated medical crisis that required end-of-life care to be discussed. The WARP Karnofsky Performance Score (WKPS; Physical) and Barthel Index (BI; Physical) tools were used.	Qualitative multi-method design (Prospective case notes; resident and staff interviews)	61 (61)	Care home residents and directors of care	Residents who were suffering from multiple conditions were highly dependent for activities of daily living. Their symptoms, in order of prevalence, were constipation, pain, dysphagia, weakness, dyspnoea, and depression. Symptoms such as weakness, anxiety, and restlessness appeared to be the most distressing and the most difficult to relieve. Other symptoms rated as moderate or severe were constipation, dyspnoea, depression, and pain. Residents with moderate/severe symptoms would have been helped by a referral to a respiratory physician (dyspnoea) or to a palliative care service. Most residents’ care was consistent with a palliative approach, with only three residents in the study referred to a specialist palliative care service. However, for some residents, pain and symptom management were not always adequate, and referral to a specialist palliative care service would have been appropriate.
Reinke et al., 44 United States of America	Cross-sectional telephone surveys and structured interviews to randomly selected patients at high risk of hospitalisation or death within the subsequent year across four geographical regions of the U.S. enrolled in primary care clinics in the Veterans Affairs Health Care System. The Care Assessment Needs Score (Physical), Veterans Rand 12-item Health Survey (VR12; Physical, Psychological), and Memorial Symptom Assessment Scale (MSAS; Physical and Psychological) tools were used.	Cross-sectional telephone survey	503 (503)	Older people	Patients with multimorbidity (on average five diagnoses) reported high symptom burden, poor physical function, and low quality of life. Among the 503 patients, 26% reported their most bothersome symptom was not assessed by their primary care clinician at their last clinic appointment, and 30% reported this symptom was not being treated. Patients reporting physical symptoms as their most bothersome symptom were more likely to perceive their clinician as addressing their symptoms compared with patients reporting psychological symptoms.
Sloane et al., 45 United States of America	Decedents of nursing home residents who had died in the past month, where the resident had spent 15 of the last 30 days of life in a study facility and died no more than 3 days after leaving the facility. The Physician-Family Caregiver Communication (FPPCC; Social, Practical) tool was used.	Cross-sectional	581 (581)	Staff and family (proxy) members of decedents	No differences were noted between decedents with and without dementia in terms of pain, psychosocial status, family involvement in care, advance care planning, use of most life-prolonging interventions, and hospice use. Dying residents with dementia, in comparison with nondemented, tended to die less often in a hospital, have less shortness of breath, receive more physical restraints and sedative medication, and use emergency services less frequently on the last day of life. Persons with dementia dying in residential care/assisted living (RC/AL) tended to have more skin ulcers and poorer hygiene care than non-demented persons in RC/AL.
Strohbuecker et al., 46 Germany	Nursing Home residents who suffered from a chronic illness and were able to communicate in a consistent and meaningful way.	Qualitative interviews	9 (9)	Nursing home residents	Six (not mutually exclusive) categories of residents’ needs were identified, encompassing social, emotional, spiritual, and physical aspects of wellbeing. Illness-related issues were not in the foreground; rather, the major concerns were around self-determination of everyday life and social life. Aspects of death and dying were rarely brought up by the participants themselves, but when they were asked explicitly, they were willing to talk about them. Most had a fearless attitude to dying. The residents in this study expressed their needs within their own frame of reference, not using the terminology of medicine, nursing, or palliative care.
van den Brink et al., 47 The Netherlands	Nursing home residents who needed both physical and psychiatric care, as shown in the medical history, and whose psychiatric or behavioural problems had been present for ⩾2 years without prospect of substantial recovery. The Camberwell Assessment of Need for the Elderly (CANE; Physical, Practical, Psychological, Social) tool was used.	Mixed methods (convergent design) Survey; patient interviews; staff interviews with clinical notes)	141 (141)	Resident self-report questionnaires and interviews; nursing staff perspectives on residents’ needs through interviews and clinical data review	Discrepancies between residents and nursing staff about perceived unmet needs was most common in the areas of accommodation, company, and daytime activities. Both the residents and the nursing staff reported ‘household activities’, ‘money’, and ‘medication’ as the most frequently met needs. Residents rated the most frequently unmet needs on the domains of ‘accommodation’, ‘company’, and ‘psychological distress’; the nursing staff rated these ‘company’, ‘physical health’, and ‘behaviour’.
Vandenberg et al., 48 United States of America	Representatives for deceased military veteran nursing home residents who had died in the preceding year. Representatives were identified by the veterans’ home staff as an individual most attentive to the resident.	Mixed methods (convergent design) Survey; quality improvement (QI); and team activities.	45 (45)	Family or representative of the deceased	The specific areas that were improved per the survey results (which also correlated with staff perceptions) were the following: overall quality of care, spiritual care, distribution of workload, and patients’ preparedness for death. The prevalence of symptoms was reduced by 22% (pain), 25% (dyspnoea), and 30% (uncomfortable symptoms of dying). A marked improvement in involvement of clergy in spiritual care was also noted. The survey process also identified areas that did not improve or worsened, such as management of depression, agitation, anxiety, loneliness, family education, and discussions.
Vohra et al., 49 Canada	A family member of a deceased resident of a long-term care facility who had died within the preceding 12 months, had been a resident of the facility for at least a month, and where the death had been expected. Participants were those who were identified by the facility as the family member who possessed power of attorney for personal care, and/or who were viewed by facility staff as most involved in the care of the resident. The Family Perception of Care Scale (FPCS; Physical, Practical) was used.	Survey	104 (213)	A family member of the decedent	Family comments fell into two themes: (1) appreciation for the care and( 2) concerns with care. The appreciation for care theme included the following subthemes: psychosocial support, family care, and spiritual care. The concerns with care theme included the subthemes: physical care, staffing levels, staff knowledge, physician availability, communication, and physical environment.