Japanese people's preference for place of end-of-life care and death: a population-based nationwide survey

Context

Japanese people's preferred place of end-of-life care may be affected by their experiences, perceptions, and knowledge related to the end of life.

Objectives

The aims of this study were to clarify the Japanese population's preferences for the place of end-of-life care and death and to identify the determinants of each choice of preferred place of end-of-life care within their experiences, perceptions, and knowledge.

Methods

A total of 2000 Japanese people aged 40–79 years participated in a cross-sectional nationwide survey.

Results

Fifty-five percent (n = 1042) responded. Regarding place of end-of-life care, approximately 44% of the general population preferred home, 15% preferred hospital, 19% preferred palliative care unit, 10% preferred public nursing home, 2% preferred private nursing home, and the remaining 11% was unsure. Multinomial logistic regression analysis revealed that the following factors affect people’s preferences regarding place of care: 1) experiences, such as “visiting hospital regularly” and “experiencing home death of relatives,” 2) perceptions, such as “giving due thought to their own death on a daily basis” and “perceiving lower home palliative care costs to be appropriate after comparing hospital admission fees,” and 3) knowledge of “home care nursing” and “24-hour home palliative system by physicians and nurses using insurance.” These factors correlated with preference for hospital, palliative care unit, or public nursing home, when compared with the preference of home.

Conclusion

The present findings may help to develop an effective end-of-life care system in Japan, in line with people’s various preferred locations for such care.     

Best interests at end of life: A review of decisions made by the Consent and Capacity Board of Ontario

Purpose

When patients are unable to communicate their own wishes, surrogates are commonly used to aid in decision making. Although each jurisdiction has its own rules or legislation governing how surrogates are to make health care decisions, many rely on the notion of “best interests” when no prior expressed wishes are known.

Methods

We purposively sampled written decisions of the Ontario Consent and Capacity Board that focused on the best interests of patients at the end of life. Interpretive content analysis was performed independently by 2 reviewers, and themes that were identified by consensus as describing best interests were construed, as well as the characteristics of an end-of-life dispute that may be most appropriately handled by an application to the Consent and Capacity Board.

Results

We found that many substitute decision makers rely on an appeal to religion or God in their interpretation of best interests, whereas physicians focused narrowly on the clinical condition of the patient in their interpretations.

Conclusions

Several lessons are drawn for the benefit of health care teams engaged in end-of-life conflicts with substitute decision makers over the best interests of patients.     

Factors associated with dementia care practices among community health nurses: Results of a postal survey

Background

The incremental prevalence of dementia is making dementia management a worldwide issue. The role of community health nurses must grow along with the increasing aging population and the resulting increase in dementia cases.

Objectives

Explore the factors related to dementia care practices among the different types of community health nurses in Taiwan.

Design

Cross-sectional study.

Setting

Primary care centers or institutions in New Taipei City.

Participants

Community health nurses who work in health care centers (district nurses), long-term care centers (care managers), or home care institutions (home health care nurses).

Methods

Self-completion questionnaires sent by mail.

Results

A total of 195 participants returned the questionnaires (response rate 81.9%). Although 65.8% of participants had experience in case finding, just 34.6% of them reported using validated cognitive testing tools. Only 15% of participants provided case management following dementia case findings. The regression models showed that the different types of community health nurses, number of years working as a nurse, and their level of confidence was significantly related to their dementia care practice. District nurses identified significantly less suspected dementia cases and provided less nursing care to caregivers of dementia patients than care managers and home health care nurses. Among community health nurses, the care managers most often used formal cognitive instruments. District nurses provided the least amount of supportive resources information, had the most negative attitude and the lowest level of confidence toward dementia care than care managers and home health care nurses.

Conclusions

This study presented the profiles of dementia care practice in Taiwan. It showed the considerable variation in knowledge, attitude, confidence and dementia care practices among the different community health nurses. The professional roles regarding dementia care in Taiwan remain blurred. Future training must focus on promoting the level of confidence of community health nurses to identify and manage people with dementia and raise awareness about demented person's and their caregiver's need. The priority of the policy on dementia care in the community must be raised to high, and the professional responsibilities and roles of the different types of community health nurses for the ever increasing dementia population in Taiwan must be redefined and optimized.     

Factors associated with quality of life of people with dementia in long-term care facilities: A systematic review

Background

Quality of life has become an important outcome measure in dementia research. Currently there is no convincing evidence about which factors are associated with quality of life of people with dementia living in long-term care facilities.

Objective

This study aims to investigate which factors are associated with quality of life, including factors associated with change over time, of people with dementia living in long-term care facilities.

Design

A systematic literature review was performed.

Data sources

Cochrane, Pubmed, CINAHL, Web of Science, and PsycINFO were searched.

Review methods

Three researchers independently assessed studies for eligibility. The inclusion criteria were: (1) the primary focus was on factors related to quality of life; (2) the study was performed in long-term care facilities; (3) the study regarded quality of life as multidimensional construct. Methodological quality of studies included in the review was assessed with a quality criteria checklist.

Results

Ten cross-sectional and three longitudinal articles were included in the review. In cross-sectional studies, depressive symptoms were negatively related to self-rated quality of life of people with dementia. The association between depressive symptoms and proxy-rated quality of life was less clear. Behavioural disturbances, especially agitation, appeared to be negatively related to proxy-rated quality of life. There appeared to be a negative relation between quality of life, activities of daily living and cognition, although this could not be confirmed in all studies. In longitudinal studies, depressive symptoms were negatively related and cognition was positively related to self-rated quality of life, whereas dependency and depressive symptoms were negatively related to proxy-rated quality of life.

Conclusions

There are only few high quality studies that investigate associations of (change in) quality of life of people with dementia living in long-term care facilities. Our results suggest that depressive symptoms and agitation are related to lower quality of life. Perspective of quality of life measurement, i.e. self- or proxy rating, may influence its associations. Longitudinal studies are needed to determine which factors are related to change in quality of life over time. This information is essential for the development of interventions that aim to improve quality of life.     

The challenges of achieving person-centred care in acute hospitals: A qualitative study of people with dementia and their families

Background

Person-centred care has been identified as the ideal approach to caring for people with dementia. Developed in relation to long stay settings, there are challenges to its implementation in acute settings. However, international policy indicates that acute care for people with dementia should be informed by the principles of person-centred care and interventions should be designed to sustain their personhood.

Objectives

Using Kitwood's five dimensions of personhood as an a priori framework, the aim of this paper was to explore the way in which current approaches to care in acute settings had the potential to enhance personhood in older adults with dementia.

Design

Data collected to explore the current experiences of people with dementia, family carers and co-patients (patients sharing the ward with people with mental health problems) during hospitalisation for acute illness were analysed using a dementia framework that described core elements of person centred care for people with dementia.

Settings

Recruitment was from two major hospitals within the East Midlands region of the UK, focusing on patients who were admitted to general medical, health care for older people, and orthopaedic wards.

Participants

Participants were people aged over 70 on the identified acute wards, identified through a screeing process as having possible mental health problems. 34 patients and their relatives were recruited: this analysis focused on the 29 patients with cognitive impairment.

Method

The study involved 72 h of ward-based non-participant observations of care complemented by 30 formal interviews after discharge concerning the experiences of the 29 patients with cognitive impairment. Analysis used the five domains of Kitwood's model of personhood as an a priori framework: identity, inclusion, attachment, comfort and occupation.

Results

While there were examples of good practice, health care professionals in acute settings were not grasping all opportunities to sustain personhood for people with dementia.

Conclusions

There is a need for the concept of person-centred care to be valued at the level of both the individual and the organisation/team for people with dementia to have appropriate care in acute settings.     

Best interests at end of life: an updated review of decisions made by the Consent and Capacity Board of Ontario

Purpose

To increase our understanding of the notion of “best interests” in end of life disagreements through an updated review of decisions made by the Consent and Capacity Board of Ontario. There was a significant increase (235%) in decisions from this tribunal between 2009 and 2011. “Best interests” test is used when no prior expressed wishes are known to the surrogate decision-makers.

Methods

Purposively sampled written decisions of the Consent and Capacity Board of Ontario between 2003 and 2011 that focused on the “best interests” of patients at the end of life. Interpretive content analysis was performed independently by 3 reviewers, and themes were identified by consensus.

Results

We found substitute decision makers (SDMs) rely on an appeal to their own values or religion in their interpretation of best interests; physicians rely on clinical conditions; board emphasizes alignment with Health Care Consent Act. In the more recent cases, we found that SDMs report that patients value suffering; that SDMs have unrealistic hope for recovery and can communicate and get direction from the incapable patient; that SDMs need education on their role and responsibility as SDM; and that SDMs need time to provide consent, and that most proposed treatment plans that were sources of conflict included “palliative care.”

Interpretation

Several lessons are drawn for the benefit of health care teams engaged in disagreements at end of life with SDMs over the best interests of patients.     

Life is lived forwards and understood backwards – Experiences of being affected by acute coronary syndrome: A narrative analysis

Background

Patients affected by acute coronary syndrome (ACS) report several symptoms subsequent to their discharge from hospital. These symptoms prolong their sick leave and complicate their return to the normal activities of everyday life. To improve health outcomes and establish quicker recovery for these patients, there is a need to better understand patients’ perceptions of their illness.

Objective

To explore patients’ experiences of ACS during their hospital stay.

Design

A qualitative interpretative interview study was conducted among patients during their hospitalization for ACS.

Setting

The study was performed in two designated coronary care units at a hospital in Sweden.

Participants

Twelve participants (five women and seven men; age range, 45–72 years), hospitalized with a diagnosis of ACS, were included in this study.

Methods

Patient narratives were recorded and transcribed. The records were later analyzed using a phenomenological hermeneutic approach.

Results

Patient experiences of ACS were formulated into one main theme: “awareness that life is lived forwards and understood backwards”. Two minor themes predominated in this main theme. The first was a sense of “struggling to manage the acute overwhelming phase”, which included four sub-themes: onset of life-threatening symptoms; fear and anxiety; being taken by surprise; and experiencing life as a hazardous adventure. The second theme was “striving to obtain a sense of inner security”, which also included four sub-themes: searching for and processing the cause and its explanation; maintaining a personal explanation; dealing with concern and uncertainty; and having a readiness to negotiate with life-pattern activities.

Conclusions

Hospitalized patients affected by ACS consider the cause of the onset and prepare to optimize their future health. These patients construct personal models to explain their disease, which may persist throughout continuum of care. One way to improve health outcomes for patients with ACS is to establish a shared knowledge about the illness and formulate personal care plans that cover the hospital stay as well as possibly extending into primary care after discharge, based on the patients’ point of view.     

The Standard of Care and conflicts at the End of Life in critical care: Lessons from medical-legal crossroads and the role of a quasi-judicial tribunal in decision-making

Purpose

The goals of this qualitative study were to review the last 7 years of end of life legal decisions within the critical care field to explore how medical benefit is defined and by whom and the role of the standard of care (SoC) in conflict resolution.

Methods

A public online, non-profit database of the Federation of Law Societies of Canada was searched for relevant Consent and Capacity Board decisions from 2003 to 2012. In total, 1486 cases were collected, and purposive sampling identified a total of 29 decisions regarding use of life-sustaining treatments at end of life. Using modified grounded theory, decisions were read and analyzed from a central SoC concept to understand definitions of benefit, rationales for case adjudication, and repercussions of legal recourse in conflict resolution.

Results

Medical benefit was clearly defined, and its role in determining SoC, transparent. Perceptions of variability in SoC were enhanced by physicians in intractable conflicts seeking legal validation by framing SoC issues as “best interest” determinations. The results reveal some key problems in recourse to the Consent and Capacity Board for clinicians, patients and substitute decision makers in such conflict situations.

Conclusions

This study can help improve decision-making by debunking myth of variability in determinations of medical benefit and the standards of care at end of life and reveal the pitfalls of legal recourse in resolving intractable conflicts.     

Rapid response teams,do not resuscitate orders,and potential opportunities to improve end-of-life care: a multicentre retrospective study

Purpose

Rapid response teams (RRTs) were created to stabilize acutely ill patients on the ward, but recent studies suggest that RRTs may improve end-of-life care (EOLC). To learn more about the role of the RRT in EOLC at our institutions, we conducted a retrospective review.

Methods

Retrospective review of 300 RRT consultations at 3 academic hospitals in Toronto, Canada.

Results

The typical consultation was for an elderly patient with chronic illness. More than 90% had a “full resuscitation” order at the time of consultation. One third were admitted to the intensive care unit within 48 hours of the RRT consultation, and 24.7% ultimately died. Twenty-seven (9.3%) had a patient/family conference on the ward within 48h of the RRT consultation, 24 (8.3%) of whom changed their resuscitation order as a result. Among those who changed their resuscitation order, fewer than 20% were referred to the palliative care or spiritual care service, or prescribed comfort medications as needed (pro re nata), within 48h of the RRT consultation; 2 patients died without receiving any common EOLC orders, and 15 (63%) died before discharge.

Conclusions

RRT consultation is an important milestone for many patients approaching EOL. RRTs frequently participate in EOL discussions and decision-making, but they may miss opportunities to facilitate EOLC.     

Assessing the quality of interdisciplinary rounds in the intensive care unit

Purpose

Interdisciplinary rounds (IDRs) in the intensive care unit (ICU) are increasingly recommended to support quality improvement, but uncertainty exists about assessing the quality of IDRs. We developed, tested, and applied an instrument to assess the quality of IDRs in ICUs.

Materials and Methods

Delphi rounds were done to analyze videotaped patient presentations and elaborated together with previous literature search. The IDR Assessment Scale was developed, statistically tested, and applied to 98 videotaped patient presentations during 22 IDRs in 3 ICUs for adults in 2 hospitals in Groningen, The Netherlands.

Results

The IDR Assessment Scale had 19 quality indicators, subdivided in 2 domains: “patient plan of care” and “process.” Indicators were “essential” or “supportive.” The interrater reliability of 9 videotaped patient presentations among at least 3 raters was satisfactory (κ = 0.85). The overall item score correlations between 3 raters were excellent (r = 0.80-0.94). Internal consistency in 98 videotaped patient presentations was acceptable (α = .78). Application to IDRs demonstrated that indicators could be unambiguously rated.

Conclusions

The quality of IDRs in the ICU can be reliably assessed for patient plan of care and process with the IDR Assessment Scale.     

Continuous end-tidal carbon dioxide monitoring in pediatric intensive care units

Purpose

End-tidal carbon dioxide (ETCO₂) monitoring has a variety of clinical applications in critically ill pediatric patients. This study was designed to explore the current availability and utilization patterns for continuous ETCO₂ monitoring in pediatric intensive care units.

Methods

A Web-based survey was distributed to directors of all accredited pediatric critical care fellowship programs in the United States.

Results

Sixty-six percent of directors completed this survey. One hundred percent of directors had access to ETCO₂ monitoring for intubated patients and 57% for nonintubated patients. Eighty-three percent of respondents used ETCO₂ monitoring “always” or “often” for endotracheal tube confirmation. Fifty percent of respondents used ETCO₂ monitoring “always” or “often” for cardiopulmonary resuscitation, 38% for moderate sedation, and 5% for acid-base disturbances. All respondents who used ETCO₂ monitoring felt that it was easy to use. The most common reason for not using ETCO₂ monitoring was lack of availability (75%).

Conclusions

End-tidal carbon dioxide monitoring is widely available and used for intubated patients. However, it could be applied more frequently in other clinical situations in pediatric intensive care units.     

The lived experience of parents of children admitted to the pediatric intensive care unit in Lebanon

Background

Family caregivers have a significant responsibility in the care of their child in the Pediatric Intensive Care Unit (PICU). Parents staying with their child in the PICU have particular needs that should be acknowledged and responded to by clinicians. Several studies have been conducted in the USA and Europe to try to understand the experience of family caregivers of children admitted to the Pediatric Intensive Care Unit. There are no such studies in Lebanon or the Middle East where the culture and support systems differ from other countries.

Objective

To understand the lived experience of Lebanese parents of children admitted to the PICU in a tertiary hospital in Beirut.

Design

Phenomenological study.

Methods

The study followed purposeful sampling in which 10 parents (mother or father) of children admitted to PICU were interviewed. Data were analyzed following the hermeneutical process as described by Diekelmann and Ironside (1998).

Results

A constitutive pattern “Journey into the unknown” which constitutes an overarching theme and four major themes with subthemes emerged from the data. These were: We are human beings with dignity “; “looking for a healthier environment”; Dependence on God and “The need to be in the loop” reveal the parents’ journey into the unknown.

Conclusion

This qualitative study adds to the knowledge that would help health care workers understand the experience of Lebanese parents with a child in PICU and to highlight the significance of this experience to them. The findings could be used to inform the development of a PICU parental satisfaction instrument for the sample group.     

Resident outcomes of person-centered care in long-term care: A narrative review of interventional research

Background

Person-centered care has been widely promoted in long-term care settings. It is commonly referred to as a core concept that guides the care philosophy change in long-term care settings from a traditional medical model to a more humanistic approach to care. Current person-centered practice in long-term care settings is guided by multiple person-centered care models. However, evidence regarding the effects of person-centered practice guided by multiple models on residents’ outcomes has not been well established or synthesized.

Objectives

To outline and compare the principal models and to synthesize current evidence of the effects of multiple person-centered care models on resident outcomes.

Method

Systematic searches were conducted using CINAHL, MEDLINE, PsychoINFO, Evidence Based Medicine Reviews, Cochrane Review databases, and ProQuest Dissertations and Theses using the following keywords (UK and US spellings) individually and in multiple combinations: person-centered care, resident-centered care, client-centered care, individualized care, patient-centered care, culture change, Eden Alternative, Wellspring, Green House, Pioneer Network, dementia, nursing home, assisted living and long-term care. The searches were limited to articles written in English and published from January 1990 to April 2013. Then a manual search of the reference lists of selected relevant articles was conducted.

Results

Twenty-four studies from three countries were reviewed and compared in terms of person-centered interventions, measurement, and resident outcomes. 15 culture change studies for residents who were cognitively intact or with minor cognitive impairment and 9 studies for residents with dementia were reviewed. Across the studies, culture change models had some beneficial effects on residents’ psychological wellbeing. Person-centered dementia care had significant effects on decreasing behavioral symptoms and psychotropic medication use in dementia residents in long-term care.

Conclusion

An agreed upon definition of person-centered care is essential for researchers and clinicians to guide person-centered care development and implementation. Rigorous study design and objective and subjective measurement use are needed for future studies, especially those guided by culture change models. The effectiveness of person-centered care on residents’ bio-psycho-social outcomes like sleep, stress, and physical wellbeing need to be addressed and systematically examined with subjective and objective measures in future studies.     

Documentation of code status and discussion of goals of care in gravely ill hospitalized patients

Background

Timely discussions about goals of care in critically ill patients have been shown to be important.

Methods

We conducted a retrospective chart review over 2 years (2003-2004) of patients admitted to our medical service who were classified as “expected to die.” Charts were evaluated for do-not-resuscitate (DNR) documentation and discussions of goals of care. Detailed chart reviews for demographic information, cause of death, site of death, length of stay, and duration of resuscitation attempt were performed.

Results

Of 497 charts identified, 434 (87.3%) had a DNR on file at the time of death. After exclusion of patients who died in less than 24 hours, 18 no-DNR charts remained. Seven noted a decision to continue aggressive care and 11 had no code status discussion documented. Younger patients and patients with cardiovascular disease were less likely to have a DNR. Resuscitation times were longer in the no-discussion group. All patients who died without a DNR died in the intensive care unit. Seventy-six percent of discussions were done by medicine housestaff.

Conclusions

Although the overall rate of DNR documentation was high, several trends emerged. Medicine housestaff in the intensive care unit would be a logical group to target for an educational intervention to address these discrepancies.     

Initiating palliative care in the emergency department

Background

In 2006, nearly a quarter of a million patients either arrived dead or died in the Emergency Department (ED). The role of palliative care (PC) in the ED is not well defined, and education of medical students and residents in the area is sparse.

Objectives

We use an illustrative case to discuss important concepts in PC for the emergency physician (EP). The reader should be able to define hospice and PC, recognize its importance in the practice of Emergency Medicine, and understand the benefits PC has for the patient, the patient’s family and caregivers, and the health care system as a whole.

Discussion

PC excels at treating pain and addressing end-of-life issues. Families and caregivers of patients benefit from PC in terms of improved personal quality of life after the patient’s death. PC is more cost-effective than traditional medical care.

Conclusion

Research on PC in the ED is sparse but it is a growing need, and the EP will need to become proficient in the delivery of PC in the ED.     

Managing intensive care units: Make LOVE,not war!

Objective

Describe a program set up in a French intensive care unit (ICU) aimed at improving communication inside the team and communication information given to patients and their relatives; explain how those actions can improve communication inside the ICU and ultimately why it could improve patient's outcome.

Design and Methods

Position paper.

Intervention

Progressive implementation of multifaceted quality improvement program.

Results

The program Leadership, Ownership, Values, and Evaluation (LOVE) was developed over 10 years. It was usually well accepted by the members of the team, patients, and relatives, in particular the 24-hour visiting program that was prospectively evaluated. Information and decisions were shared with the patients or more often with the relatives, who became for some of them really “part of the team.” Additional actions such as participation to some of the simplest cares by the families are under investigation. A prospective evaluation of such programs, although difficult to perform, remains probably necessary.

Conclusion

Quality of life within the ICU is based on many factors including a strong and positive leadership, an absolute respect of individuals, and a rigorous evaluation of quality of care, which could influence heavily the quality of life in the ICU for patients, relatives, and health care professionals and facilitate team work. Whether this could really influence outcome remains to be demonstrated.     

Health care aides use of time in a residential long-term care unit: A time and motion study

Background

Organizational resources such as caregiver time use with older adults in residential long-term care facilities (nursing homes) have not been extensively studied, while levels of nurse staffing and staffing-mix are the focus of many publications on all types of healthcare organizations. Evidence shows that front-line caregivers’ sufficient working time with residents is associated with performance, excellence, comprehensive care, quality of outcomes (e.g., reductions in pressure ulcers, urinary tract infections, and falls), quality of life, cost savings, and may be affiliated with transformation of organizational culture.

Objectives

To explore organizational resources in a long-term care unit within a multilevel residential facility, to measure healthcare aides’ use of time with residents, and to describe working environment and unit culture.

Methods

An observational pilot study was conducted in a Canadian urban 52-bed long-term care unit within a faith-based residential multilevel care facility. A convenience sample of seven healthcare aides consented to participate. To collect the data, we used an observational sheet (to monitor caregiver time use on certain activities such as personal care, assisting with eating, socializing, helping residents to be involved in therapeutic activities, paperwork, networking, personal time, and others), semi-structured interview (to assess caregiver perceptions of their working environment), and field notes (to illustrate the unit culture). Three hundred and eighty seven hours of observation were completed.

Results

The findings indicate that healthcare aides spent most of their working time (on an eight-hour day-shift) in “personal care” (52%) and in “other” activities (23%). One-to-three minute activities consumed about 35% of the time spent in personal care and 20% of time spent in assisting with eating. Overall, caregivers’ time spent socializing was less than 1%, about 6% in networking, and less than 4% in paperwork.

Conclusions

Re-organizing healthcare aides’ routine practices may minimize the short one-to-three minute intervals spent on direct care activities, which can be interpreted as interruptions to continuity of care or waste of time. Fewer interruptions may allow healthcare aides to use their time with residents more effectively.     

The use of palliative care services associated with better dying circumstances. Results from an epidemiological population-based study in the brussels metropolitan region

Context

There is some consensus that a “good death” is one which occurs at home, in the presence of loved ones, and is free of distress. Involvement of palliative care services is assumed to improve these circumstances.

Objectives

This population-based study describes characteristics of the end of life of patients dying in Brussels and examines their associations with the involvement of palliative care services.

Methods

In 2007, an anonymous large-scale mortality follow-back survey was conducted in Brussels by mailing questionnaires regarding end-of-life care and characteristics to the attending physicians of a representative sample of 1961 deaths.

Results

Response rate was 41% (n = 701). Of all deaths, 59% were nonsudden. Of these, 12% took place at home. For 27%, the attending physician was informed about the patient’s preferred place of death. When the preference to die at home was known, 66% died at home. At the moment of death, in 47% of nonsudden deaths, loved ones were present. In a quarter of deaths, palliative care services were involved. Involvement with palliative care services was more likely for cancer patients than noncancer patients and was associated with the attending physicians more often being informed about the preferred place of death, with patients more often dying at home, with loved ones more often being present, and with a better feeling of well-being on the last day.

Conclusion

Overall, circumstances at the very end of life are suboptimal in Brussels. This study provides a case for stronger involvement of palliative care as a focal point for policies to improve end-of-life circumstances in a metropolitan area such as Brussels.