To individually plan end-of-life care, open communication about a person's preferences and attitudes toward the end of life can facilitate dignity and quality of life in patients and relatives. To improve communication, structured guiding tools might be used as door openers. However, most tools focus on care preferences and decisions without assessing the person's underlying attitudes in detail. This study aims to get insights into specific requirements and conditions for communication about the end of life in various end-of-life care settings. Four focus groups were conducted with volunteers and professionals from nursing and psychosocial care (16 females, 2 males) working in hospice and palliative care and long-term care settings in Germany. A semistructured interview guideline on experiences and aspects associated with end-of-life conversations was used. Interviews were audiotaped, transcribed verbatim, and analyzed by a content analytic approach. Having end-of-life discussions primarily depended on a pleasant atmosphere, trusting bonds between conversation partners, and professional attitudes of staff members. Nursing home staff felt obligated to initiate conversations, but some reported insecurities doing so. Starting "early," including relatives, and having continuous discussions seemed beneficial for end-of-life conversations. Implementing conversations into existing care structures and using low-threshold impulses to start conversations were helpful. Individualized approaches should be preferred. Each staff member can be a partner in detailed conversations about end-of-life attitudes, but some felt unprepared doing so. Further skill training concerning end-of-life discussions is needed. Communication might be facilitated by open-format tools using low-threshold impulses when conditions of the care setting are considered.
End-of-life (EOL) care conferences have an important role in promoting EOL care in nursing homes. However, the details of the conferences remain poorly understood. A Japanese prefecture-wide survey was conducted to investigate the factors involved in such conferences that contribute to an increase in the amount of EOL care. One hundred fifty-three nursing homes performed the conferences. The outcome was the amount of EOL care provided in nursing homes after adjusting for the facility beds in 2014. We investigated the factors of staff experience with EOL care, frequency of the conferences, years the conferences were conducted, review conferences after EOL care, and professional participants in the conferences. The multivariate analysis revealed significant associations between EOL care in nursing homes and nurses' experience with EOL care (adjusted ß coefficient 2.9, 95% confidence interval (CI) 0.52 ~ 5.22, p = 0.017), more than 5 years of continuous conferences (adjusted ß coefficient 3.8, 95% CI 0.46 ~ 7.05, p = 0.026), and family participation (adjusted ßcoefficient 4.0, 95% CI 7.5 ~ 0.48, p = 0.026). In conclusion, the continuation of conferences and enrollment of the nurse with experience in EOL care may promote EOL care in nursing homes, while family enrollment in conferences may decrease EOL care in nursing homes. EOL care conferences in nursing homes should be continuously performed by staff, with an experienced nurse undertaking the task of information sharing before discussing EOL care with the patients' families.
Family members are often involved in medical decision-making on behalf of a nursing home resident. Prospect theory provides a framework for understanding how people weigh decisions. In the current study, prospect theory concepts are used to build understanding about how family members weigh medical decisions for an NH resident diagnosed with cancer. This is a secondary analysis of qualitative interview data from 24 family members of nursing home residents. Prospect theory concepts of gain, loss, risk, and reference point were used deductively in qualitative content analysis. Themes were developed by comparing content related to these four concepts, across the transcripts from the 24 participants. Three themes comprise the main findings, including "Don't prolong this," "A good ending is a gain," and "Experience can facilitate seeing the big picture." Prospect theory concepts applied to decisions faced by family members were useful in building an understanding of what participants considered as gains, losses, risks, and reference points. Many participants framed the medical decisions within the larger context of the resident's life and concluded that jeopardizing the chance for a peaceful dying process was too high a risk. Medical interventions were selected or avoided because of the impact on a comfortable dying process; considered a gain. Advance care planning discussions and goals of care discussions can benefit by directly addressing what residents/patients, families, and health practitioners consider outcomes worth pursuing and avoiding.
INTRODUCTION: Standard advance care planning practice is yet to be established in Mainland, China, and little is known about feeding tube preferences among Chinese nursing home residents. The purpose of the study was to examine preferences for feeding tube use and its predictors among frail and cognitively competent nursing home residents in Wuhan, China.
METHOD: A cross-sectional sample of 682 nursing home residents were interviewed face-to-face using a structured questionnaire from 2012 to 2014.
RESULTS: A total of 54.5% of participants would accept feeding tube. Participants who reported greater quality of life (odds ratio [OR] = 2.67), having health insurance (OR = 2.09) were more willing to accept feeding tube. Participants with greater impairment in physical health (OR = 0.94) were less willing to accept it.
DISCUSSION: Health care professionals need to routinely assess nursing home residents' feeding tube preferences. It is imperative to consider sociocultural perspectives in understanding Chinese older adults' decision making for end-of-life care.
BACKGROUND: While the importance of hospice care education in nursing homes is recognized, the volume of research on the specific educational needs of caregivers in hospice care in nursing homes is still lacking. This study aimed to assess educational needs in hospice care among the nursing home staff in South Korea, and to examine factors related to their education needs.
METHODS: This is a cross-sectional descriptive study. A total of 324 nursing staff members recruited from 15 nursing homes in South Korea participated in this cross-sectional study. Measurements included demographic information, organizational characteristics, education experiences in hospice care, and educational needs in hospice care based on questionnaires developed by Whittaker and colleagues. Data were analyzed using descriptive statistics, t-test, ANOVA, and multiple regression techniques.
RESULTS: In the present study, 70.6% (n = 218) of respondents reported that they had previous experience with education in hospice care and expressed their continued need for further education. The provision of care in the last days of a patient’s life was the most frequent issue identified by nursing home staff for further education. Factors predicting educational needs in hospice care included provision of hospice care services in nursing homes and the existence of hospice care team meetings in the institution. Multiple regression analysis resulted in 14.3% of explained variance in the educational needs of nursing home staff in hospice care.
CONCLUSIONS: Nursing home staff members showed high levels of need for training in hospice care. Therefore, it is imperative for nursing home administrators to initiate and support well-suited hospice care education for multi-level care workers on an ongoing basis.
OBJECTIVES: To examine family caregivers' experiences with end-of-life care for nursing home residents with dementia and associations with the residents dying peacefully.
DESIGN: A secondary data analysis of family caregiver data collected in the observational Dutch End of Life in Dementia (DEOLD) study between 2007 and 2010.
SETTING AND PARTICIPANTS: Data were collected at 34 Dutch nursing homes (2799 beds) representing the nation. We included 252 reports from bereaved family members of nursing home residents with dementia.
MEASURES: The primary outcome was dying peacefully, assessed by family members using an item from the Quality of Dying in Long-term Care instrument. Unpleasant experiences with end-of-life care were investigated using open-ended questions. Overall satisfaction with end-of-life care was assessed with the End-of-Life Satisfaction With Care (EOLD-SWC) scale, and families' appraisal of decision making was measured with the Decision Satisfaction Inventory. Associations were investigated with multilevel linear regression analyses using generalized estimating equations.
RESULTS: Families' reports of unpleasant experiences translated into 2 themes: neglect and lack of respect. Neglect involved facing inaccessibility, disinterest, or discontinuity of relations, and negligence in tailored care and information. Lack of respect involved perceptions of being purposefully disregarded, an insensitive approach towards resident and family, noncompliance with agreements, and violations of privacy. Unpleasant experiences with end-of-life care were negatively associated with families' perceptions of the resident dying peacefully. Families' assessment of their relative dying peacefully was positively associated with satisfaction with end-of-life care and decision making.
CONCLUSIONS/IMPLICATIONS: Families' reports of unpleasant experiences with end-of-life care may inform practice to improve perceived quality of dying of their loved ones. Humane and compassionate care and attention from physicians and other staff for resident and family may facilitate recollections of a peaceful death.
BACKGROUND: Physician Orders for Life-Sustaining Treatment (POLST) can help ensure continuity of do-not-resuscitate (DNR) decisions and other care preferences after discharge from the hospital.
OBJECTIVE: We aimed to improve POLST completion rates for patients with DNR orders who were being discharged to a nursing home (NH) after an acute hospitalization at our institution.
DESIGN: We implemented an interprofessional quality improvement intervention involving education, communication skills, and nursing and case manager cues regarding POLST use. The intervention was later augmented with performance feedback and financial incentives for resident physicians who completed a POLST at NH transfer.
MEASURE: Whether patients with DNR orders at hospital discharge have a POLST at NH transfer.
RESULTS: The intervention resulted in increased POLST use for patients with DNR orders discharged to NH: baseline 25/65 (38%), intervention 36/71 (51%), and augmented intervention 44/63 (70%) (p < 0.01).
CONCLUSIONS: An interdisciplinary intervention can increase POLST use for patients with DNR orders transitioning to NH. Multiple components, including financial incentives and performance feedback, may be needed to effect statistically significant change.
BACKGROUND: As modern medicine extends the life expectancy of patients with life-limiting illnesses and health system resource pressures intensify, palliative care physicians increasingly need to transfer stable patients from specialist palliative care units to nursing homes. The experience of palliative care physicians in decision-making and communicating with patients and families about the need for this transition is underexplored in the literature.
AIM: This study aimed to explore the experiences of and communication techniques used by palliative care physicians as they consider and discuss nursing home placements for their patients.
DESIGN: A qualitative approach using semi-structured interviews was used. Interviews were transcribed verbatim and analysed using thematic analysis.
SETTING/PARTICIPANTS: Purposive sampling was used to recruit 18 Australian palliative care physicians known for their interest or strength in communication skills across a range of palliative care settings.
RESULTS: Themes emerged from domains of physician experience (abandonment, systemic pressures, prognostic uncertainty, exacerbation of loss, and restoring resilience) and communication strategies (forecasting, checking in, provide context, and acknowledging grief).
CONCLUSION: This study highlights the tension Australian palliative care physicians experience when transferring palliative care patients to nursing home and the complexity involved in decision-making. Physicians identified several communication strategies to engage patients and families to ease the transition.
This study evaluated a practice improvement initiative conducted over a 6 month period in 15 Canadian nursing homes. Goals of the initiative included: (1) use the Plan-Do-Study-Act (PDSA) model to improve advance care planning (ACP) within the sample of nursing homes; (2) investigate whether improved ACP practice resulted in a change in residentsâ€™ hospital use and ACP preferences for home-based care; (3) engage participating facilities in regular data collection to inform the initiative and provide a basis for reflection about ACP practice and; (4) foster a team-based participatory care culture. The initiative entailed two cycles of learning sessions followed by implementation of ACP practice improvement projects in the facilities using a PDSA approach by participating clinicians (e.g., physicians, social workers, nurses). Clinicians reported significantly increased confidence in many dimensions of ACP activities. Rates of hospital use and resident preference for home-based care did not change significantly. The initiative established routine data collection of outcomes to inform practice change, and successfully engaged physicians and non-physician clinicians to work together to improve ACP practices. Results suggest recurrent PDSA cycles that engage a â€˜critical massâ€™ of clinicians may be warranted to reinforce the standardization of ACP in practice.
AIM: The aim of the present study was to find out physicians' perceptions about the transfer of dying nursing home residents to emergency departments.
METHOD: This qualitative study used semi-structured interviews, and data were analyzed using qualitative methods. Participants were medical directors of nursing homes who were informed by e-mail and included when they agreed to take part in our study.
RESULTS: We interviewed 12 medical directors until data saturation. The following themes emerged: (i) related to the resident - difficulties in identifying the end of life, refractory symptoms and lack of knowledge of the resident's wishes; (ii) related to the family - denial of the end of life/fear of death, lack of confidence in the nursing home and conflict among family members; (iii) related to the nursing staff - fear of death, lack of communication, lack of training, lack of staff (especially of nurses during the nightshift) and use of temporary employees; and (iv) related to the physicians - lack of anticipation of the end of life situation, difficulty in accessing some drugs, inadequate working hours in the nursing home, conflicting medical opinions of the GP and medical director, and lack of training on palliative care issues.
CONCLUSIONS: These results suggest many ways of reducing the transfer of dying residents to emergency departments through palliative care training, and communication about advance care planning.
Our interdisciplinary mixed-methods exploratory study was aimed at gaining empirical data on the medical and nursing demands of residents who are in a late stage of Parkinson Disease (PD) and are cared for in residential homes in Salzburg (Austria). In earlier studies it has been concluded that symptom burden of late stage PD patients is similar to or even higher compared with oncological patients. However, although all nine residents who took part in our study had severe limitations in performing their daily activities and experienced enormous restrictions in their mobility, they were quite content with their present living situations and did not show significant symptom burden. From the ethnographic family interviews that we conducted the following features emerged: a strong closeness in the family, an improved quality of life when the patients lived in the nursing home and fears about the future. Therefore, we concluded that living in a nursing home that provides for the needs of these patients is the best option for PD patients in the final stages of their disease as well as for their relatives.
OBJECTIVES: With an increased dependency on nursing homes to provide care to the ageing population, it is likely that ethical issues will also increase. This study aimed to identify the type of ethical issues and level of associated distress experienced by nurses providing palliative care in nursing homes in the UK and Canada, and pilot the Ethical issues in Palliative Care for Nursing Homes (EPiCNH) instrument in Canada.
METHODS: A cross-sectional survey design was used. One hundred and twenty-three nurses located in 21 nursing homes across the UK and Canada completed the EPiCNH instrument.
RESULTS: Frequent ethical issues include upholding resident autonomy, managing family distress, lack of staff communication and lack of time in both countries. Higher levels of distress resulted from poor communication, insufficient training, lack of time and family disagreements. Nurses in Canada experienced a greater frequency of ethical issues (p=0.022); however, there was no statistical difference in reported distress levels (p=0.53). The survey was positively rated for ease of completion, relevance and comprehensiveness.
CONCLUSIONS: Nurses' reported comparable experiences of providing palliative care in UK and Canadian nursing homes. These findings have implications on the practice of care in nursing homes, including how care is organised as well as capacity of staff to care for residents at the end of life. Training staff to take account of patient and family values during decision-making may address many ethical issues, in line with global policy recommendations. The EPiCNH instrument has demonstrated international relevance and applicability.
Aim: To describe (i) the timing of initiation of advance care planning (ACP) after nursing home admission; (ii) the association of dementia and physical health with ACP initiation; and (iii) if and how analgesic use and use of lipid modifying agents is related to ACP, in a cohort of newly admitted residents.
Methods: A prospective, observational cohort study of nursing home residents was carried out. Data were collected 3 months, 15 months (year 1) and 27 months (year 2) after admission, using a structured questionnaire and validated measuring tools.
Results: ACP was never initiated during the 2-year stay for 38% of the residents, for 22% ACP was initiated at admission, for 21% during year 1 and for 19% during year 2 (n = 323). ACP initiation was strongly associated with dementia, but not with physical health. Residents without dementia were more likely to have ACP initiation at admission or not at all, whereas ACP initiation was postponed for residents with dementia. Between admission and year 2, analgesic use increased (from 34% to 42%), and the use of lipid-modifying agents decreased (from 28% to 21%). Analgesic use increased more in residents with ACP initiation during year 1 and year 2. The use of lipid-modifying agents was not associated with ACP.
Conclusions: The timing of ACP initiation differed significantly for residents with and without dementia, which highlights the importance of an early onset of ACP before residents lose their decision-making capacity. ACP conversations might create opportunities to discuss adequate pain and other symptom treatment, and deprescribing at the end of life.
BACKGROUND: The "Surprise Question" (SQ) is often used to identify patients who may benefit from a palliative care approach. The time frame of the typical question (a 12-month prognosis) may be unsuitable for identifying residents in nursing homes since it may not be able to differentiate between those who have a more imminent risk of death within a cohort of patients with high care needs.
OBJECTIVE: To examine the accuracy and acceptability of 3 versions of the SQ with shortened prognostication time frames (3 months, 6 months, and "the next season") in the nursing home setting.
DESIGN: A prospective mixed-methods study.
SETTING/PARTICIPANTS: Forty-seven health-care professionals completed the SQ for 313 residents from a nursing home in Ontario, Canada. A chart audit was performed to evaluate the accuracy of their responses. Focus groups and interviews were conducted to examine the participants' perspectives on the utility of the SQ.
RESULTS: Of the 301 residents who were included in the analysis, 74 (24.6%) deaths were observed during our follow-up period. The probability of making an accurate prediction was highest when the seasonal SQ was used (66.7%), followed by the 6-month (58.9%) and 3-month (57.1%) versions. Despite its high accuracy, qualitative results suggest the staff felt the seasonal SQ was ambiguous and expressed discomfort with its use.
CONCLUSION: The SQ with shortened prognostication periods may be useful in nursing homes and provides a mechanism to facilitate discussions on palliative care. However, a better understanding of palliative care and increasing staff's comfort with prognostication is essential to a palliative care approach.
Introduction: Constipation is one of the most frequent clinical and nursing problems both in palliative care patients and in nursing home residents.
Aim: To assess the occurrence of constipation and its risk factors in adult inpatient palliative care units versus nursing homes.
Material and methods: An epidemiological study was performed in an inpatient hospice and a nursing home.
Results: Fifty-one hospice patients and 49 nursing home residents were included in the study. Cancer was the main clinical condition in 90% of the palliative care patients (PCPs), and dementia or other psychotic disorders were predominant in the nursing home residents (NHRs). More PCPs had constipation than did NHRs (80% vs. 59%; p = 0.02), although none of the single constipation symptoms differed statistically between these two groups. The insufficient food intake was twice as severe in the hospice patients (p = 0.0001). 68.6% of PCPs took strong opioids, while none of the NHRs did. Three times more NHRs spent at least 50% of daytime in bed than did PCPs (73.5% vs. 23.5%; p < 0.0001).
Conclusions: Constipation is very frequent in both palliative care patients and nursing home residents, but PCPs are more prone to it. The NHR and PCR groups should not be treated uniformly as the end-of-life population, referring to prevention and treatment of constipation, therapy needs, and the means enrolled for optimal symptom control.
BACKGROUND: Seventy percent of people with advanced dementia live and die in care homes. Multisensory approaches, such as Namaste Care, have been developed to improve the quality of life and dying for people with advanced dementia but little is known about effectiveness or optimum delivery. The aim of this review was to develop an explanatory account of how the Namaste Care intervention might work, on what outcomes, and in what circumstances.
METHODS: This is a realist review involving scoping of the literature and stakeholder interviews to develop theoretical explanations of how interventions might work, systematic searches of the evidence to test and develop the theories, and their validation with a purposive sample of stakeholders. Twenty stakeholders - user/patient representatives, dementia care providers, care home staff, researchers -took part in interviews and/or workshops.
RESULTS: We included 85 papers. Eight focused on Namaste Care and the remainder on other types of sensory interventions such as music therapy or massage. We identified three context-mechanism-outcome configurations which together provide an explanatory account of what needs to be in place for Namaste Care to work for people living with advanced dementia. This includes: providing structured access to social and physical stimulation, equipping care home staff to cope effectively with complex behaviours and variable responses, and providing a framework for person-centred care. A key overarching theme concerned the importance of activities that enabled the development of moments of connection for people with advanced dementia.
CONCLUSIONS: This realist review provides a coherent account of how Namaste Care, and other multisensory interventions might work. It provides practitioners and researchers with a framework to judge the feasibility and likely success of Namaste Care in long term settings. Key for staff and residents is that the intervention triggers feelings of familiarity, reassurance, engagement and connection.
STUDY REGISTRATION: This study is registered as PROSPERO CRD42016047512.
CONTEXT: In most resource-rich countries, a large and growing proportion of older adults with complex needs will die while in a Residential Aged Care (RAC) facility.
OBJECTIVES: This study describes the impact of facility size (small/large), ownership model (profit/non-profit) and provider (independent/chain) on resident comfort and symptom management as reported by RAC staff.
METHODS: This retrospective 'after-death' study collected data decedent resident data from a subsample of 51 hospital-level residential aged care facilities in New Zealand. Symptom Management and Comfort Assessment in Dying at End of life with Dementia (SM-EOLD and CAD-EOLD) scales were administered post-mortem to Residential Aged Care staff most closely associated with 217 deceased residents. Data collection occurred from January 2016 to February 2017.
RESULTS: Results indicated that residents of large, non-profit facilities experienced greater comfort at the end of life (CAD-EOLD) as indicated by a higher mean score of 37.21 (SD = 4.85, 95%CI 34.4, 40.0 compared with residents of small for-profit facilities who recorded a lower mean score 31.56 (SD = 6.20 95% CI 29.6, 33.4). There was also evidence of better symptom management for residents of chain facilities, with a higher mean score for Symptom management score (SM-EOLD total score) recorded for residents of chain facilities (mean = 28.07, SD = 7.64, CI 26.47), 29.66) was higher in comparison to the mean score for independent facilities (mean = 23.93, SD = 8.72, 95% CI 21.65, 26.20).
CONCLUSION: Findings suggest that there are differences in the quality of end-of-life care given in Residential Aged Care based on size, ownership model, and chain affiliation.
BACKGROUND: There is international and national interest in the availability and provision of quality end-of-life care. In the UK this includes the promotion of advance care planning (ACP).
AIMS: To support care home staff to apply national policy on ACP in practice.
METHODS: A proactive document, the PErsonalised Advisory CarE (PEACE) plan, was created. An audit was undertaken of its implementation in practice in one care home.
FINDINGS: All of the residents with a PEACE plan who died (n=8) did so in their preferred place of care; only 50% of residents (3 out of 6) without a PEACE plan died in their preferred place of care. No family members declined the opportunity to have a PEACE plan conversation.
CONCLUSION: Future care planning, rather than ACP, is required in nursing care homes. Research investigating the outcomes and cost-effectiveness of undertaking these conversations is required to further guide national recommendations.
BACKGROUND: Early integration of palliative care from the emergency department (ED) is an underutilized care modality with potential benefits, but few studies have identified who is appropriate for such care.
OBJECTIVE: Our hypothesis is that patients aged 65 years or older who present to the ED as level I Emergency Severity Index from a long-term care (LTC) facility have high resource utilization and mortality and may benefit from early palliative care involvement.
METHODS: We performed a retrospective chart review of patients aged 65 years or older who arrived in the ED of an academic suburban southeastern level I trauma center from an LTC facility and triaged as level I priority. The ED course, hospital course, and final outcomes were analyzed.
RESULTS: Of the 198 patients studied, 54% were deceased 30 days after discharge, with only 29.8% alive at 12 months. Admitted patients had a median hospital length of stay of 5 days and 73% required intensive care. Formal palliative care intervention was provided in 40.4%, occuring a median of 4 days into hospitalization and leading to 85% downgrading their advanced directive wishes, and discharge occuring a median of 1 day later. Few formal palliative care interventions occurred in the ED (9.1%).
CONCLUSIONS: Elderly patients from LTC facilities presenting with severe acute illness have high mortality and seldom receive early palliative care. Introduction of palliative care has the ability to change the course of treatment in this vulnerable population and should be considered early in the hospitalization and, where available, be initiated in the ED.
CONTEXT: The Nursing Home (NH) culture change (CC) movement, which emphasizes person-centered care, is particularly relevant to meeting the unique needs of residents near the end-of-life (EOL).
OBJECTIVES: We aimed to evaluate the NH-reported adoption of person-centered EOL-CC practices and identify NH characteristics associated with greater adoption.
METHODS: We used NH and state policy data for 1,358 NHs completing a nationally representative 2016/17 NH Culture Change Survey. An 18-point EOL-CC score was created by summarizing responses from six survey items related to practices for residents who were dying/had died. NHs were divided into quartiles reflecting their EOL-CC score, and multivariable ordered logistic regression was used to identify NH characteristics associated with having higher (quartile) scores.
RESULTS: The mean EOL-CC score was 13.7 (standard deviation=3.0). Correlates of higher scores differed from those previously found for non-EOL-CC practices. Higher NH leadership scores and non-profit status were consistently associated with higher EOL-CC scores. For example, a three-point leadership score increase was associated with higher odds of a NH performing in the top EOL-CC quartile (OR=2.0, 95% CI:1.82, 2.30), while for-profit status was associated with lower odds (OR=.0.7, 95% CI:0.49,0.90). The availability of palliative care (PC) consults was associated with a greater likelihood of EOL-CC scores above the median (OR=1.5, 95%CI: 1.10,1.93), but not in the top or bottom quartiles.
CONCLUSION: NH-reported adoption of EOL-CC practices varies, and the presence of PC consults in NHs explains only some of this variation. Findings support the importance of evaluating EOL-CC practices separately from other culture change practices.