Preferences and priorities for ongoing and end-of-life care: A qualitative study of older people with dementia resident in care homes

Background

The older person with dementia has a limited life expectancy and the dying trajectory can be protracted and unpredictable. For good end-of-life care, early communication, exploration of residents’ wishes, and identification of someone who can represent them, are important. In care homes the timing of these discussions, and who is involved is variable. Person-centred approaches to dementia care assume that people with dementia can actively participate in decisions about their lives. Less well understood is how this can inform end-of-life care decision making and complement information provided in advance care plans completed prior to, or at the point of admission to a care home.

Objectives

To explore how older people with dementia discuss their priorities and preferences for end-of-life care.

Methods

An exploratory, qualitative study that used guided conversations with 18 people with dementia, living in six care homes. Participants were asked about their life in the care home, their health, thoughts for the future, and wishes surrounding end of life. Data were analysed thematically.

Results

People with dementia's accounts of life in the care home, what they valued, and the impact of having dementia on how they participated in decision making, provided key insights into care preferences. Three linked themes that had relevance for thinking and talking about end of life were identified: “dementia and decision making”, “everyday relationships” and “place and purpose”. Older people with dementia's accounts of everyday experiences of care, key relationships with family and care home staff members and whether they accepted the care home as their home demonstrated what was important for them now and for the future.

Conclusion

For older people living with a diagnosis of dementia, the experience of living and dying in a care home is inextricably linked. End-of-life care planning and decision making by health care professionals, care home staff and family could be enriched by exploring and documenting the preoccupations, key relationships and wishes about everyday care of people with dementia.     

Cultural differences with end-of-life care in the critical care unit.

Critical care nurses are providing healthcare for an increasingly multicultural population. This ever-increasing diversity in cultures and subcultures presents a challenge to nurses who want to provide culturally competent care. It is common for patients and families to face difficult decisions about end-of-life care in critical care units, and minority cultures do not always believe in the Westerner's core values of patient autonomy and self-determination. Knowledge of these cultural differences is fundamental if critical care nurses wish to provide appropriate and culturally competent information regarding end-of-life decisions.     

Family satisfaction with end-of-life care for cancer patients in a cluster randomized trial

The main aim of this study was to examine similarities and differences in satisfaction with care between 112 family members who were close to patients who had participated in an intervention with a comprehensive palliative care program and the 68 family members in a conventional care program (controls). The FAMCARE Scale measured satisfaction with care at one month after the time of death. The majority of respondents reported high satisfaction with care. The respondents related to the patients in the intervention group reported significantly higher satisfaction with care than the respondents related to the patients in the control group. This difference remained unchanged after controlling for a range of other relevant factors: relationship to the deceased, sex and age of the respondent, sex and age of the patient, time since inclusion in the study, and place of death.     

The involvement of intensive care nurses in end-of-life decisions: a nationwide survey

Objective To investigate the prevalence and predictors of intensive care nurses active involvement in end-of-life (EOL) decisions.Design and setting A survey of intensive care nurses from 36 intensive care units (ICUs) in New Zealand.Measurements and results A total of 611 ICU nurses from 35 ICUs responded to this survey. The response rate was estimated to be between 43% and 81%. Seventy-eight percent of respondents reported active involvement in EOL decisions, especially the senior nurses (level IV vs. I nurses, OR 7.9; nurse educators vs. level I nurses, OR 4.3). Asian (OR 0.2) and Pacific Islander nurses (OR 0.2) were less often involved than European nurses. Sixty-eight percent of respondents preferred more involvement in EOL decisions, and this preference was associated with the perception that EOL decisions are often made too late (OR 2.2). Sixty-five percent believed their active involvement in EOL decisions would improve nursing job satisfaction.Conclusions Most ICU nurses in New Zealand reported that they are often involved in EOL decisions, especially senior and European nurses.     

Family satisfaction with family conferences about end-of-life care in the intensive care unit: increased proportion of family speech is associated with increased satisfaction

OBJECTIVE: Family members of critically ill patients report dissatisfaction with family-clinician communication about withdrawing life support, yet limited data exist to guide clinicians in this communication. The hypothesis of this analysis was that increased proportion of family speech during ICU family conferences would be associated with increased family satisfaction. DESIGN: Cross-sectional study. SETTING: We identified family conferences in intensive care units of four Seattle hospitals during which discussions about withdrawing life support were likely to occur. PARTICIPANTS: Participants were 214 family members from 51 different families. There were 36 different physicians leading the conferences, as some physicians led more than one conference. INTERVENTIONS: Fifty-one conferences were audiotaped. MEASUREMENTS: We measured the duration of time that families and clinicians spoke during the conference. All participants were given a survey assessing satisfaction with communication. RESULTS: The mean conference time was 32.0 mins with an sd of 14.8 mins and a range from 7 to 74 mins. On average, family members spoke 29% and clinicians spoke 71% of the time. Increased proportion of family speech was significantly associated with increased family satisfaction with physician communication. Increased proportion of family speech was also associated with decreased family ratings of conflict with the physician. There was no association between the duration of the conference and family satisfaction. CONCLUSIONS: This study suggests that allowing family members more opportunity to speak during conferences may improve family satisfaction. Future studies should assess the effect of interventions to increase listening by critical care clinicians on the quality of communication and the family experience.     

Racial differences in attitudes toward hospice care

Two-hundred and fifty three adults in the Atlanta area completed a telephone survey regarding prospective personal use of hospice services. Race was found to be the only personal attribute relevant to a predisposition to use hospice care. Whites were more likely than blacks to have attitudes conducive to the choice of hospice care. Although there is evidence in the literature that black Americans are less likely to use hospice care than are white Americans, there are not yet detailed explanations of personal differences in attitudes toward using hospice care. This article suggests themes for future research on possible racial differences in attitudes toward use of hospice care.     

Racial differences in medical care expenditures.

Out of pocket medical expenditures made by families for physician services, dental visits, medications, hospitalizations and insurance premiums are examined in a southern rural community using household survey interview data. White families paid an average out of pocket amount for total medical services of $709 as compared with $383 for black families over a 12-month period, 1974-75. Correlates of expenditure differences between blacks and whites are explored with respect to family characteristics (race, education of household head, family income, family size and family composition), illness levels (number of family members with perceived fair or poor health status and number of family members reporting chronic conditions), and use of services (number of doctor visits and type of usual source of care). We find that whites consistently report greater expenditures than blacks, regardless of the variables controlled for. We consider that expenditure differences are in part due to a mix of three factors: variations in the cost of doctor visits to whites and blacks; a lower level of use of services by blacks; and the differential availability and use of third party payors.     

Racial differences in drug metabolizing ability: a study with antipyrine in the Sudan

The kinetic disposition of antipyrine following oral administration of 1,200 mg has been investigated in 11 normal Sudanese subjects living in Sudan, 9 Sudanese subjects living in England for at least 2 yr, and 19 normal English subjects living in England. Sudanese subjects living in Sudan had significantly lower mean antipyrine clearance and higher volume of distribution than the English group (-28% and +30%, respectively). There was no significant difference for antipyrine clearance between English and Sudanese subjects living in England, but the volume of distribution of antipyrine was higher (16%) in the Sudanese subjects. The mean half-lives of the three groups differed significantly. We conclude that differences in disposition of antipyrine between native English and Sudanese populations was predominantly due to environmental factors.     

A pan-European survey of research in end-of-life cancer care

Background  

To date, there is no coordinated strategy for end-of-life (EOL) cancer care research in Europe. The PRISMA (Reflecting the Positive Diversities of European Priorities for Research and Measurement in End-of-life Care) project is aiming to develop a programme integrating research and measurement in EOL care. This survey aimed to map and describe present EOL cancer care research in Europe and to identify priorities and barriers.     

Results of a survey of client satisfaction with outpatient physiotherapy care

Abstract

The purpose of this study was to use a questionnaire based on the discrepancy model to assess the factors contributing to satisfaction and dissatisfaction with private outpatient physiotherapy services in Sydney; to test the applicability of the “consumer model” to physiotherapy practice, and to identify the criteria used to assess quality. The following information was collected: client demographics and history; expectations, and perceptions of 12 dimensions relating to the service received; satisfaction with previous care providers; reasons for seeking therapy; causes of previous dissatisfaction; the criteria used to assess quality; and a global assessment of satisfaction. The response rate was 69.3%. Overall satisfaction was best correlated with the therapist's willingness to discuss positive and negative aspects of treatment (r = 0.71). The findings indicate that dissatisfied clients change health care providers, as predicted by the consumer model. This calls into question the value of surveys administered to clients during therapy, as the continuation of treatment implies a degree of satisfaction. The highest expectations were recorded in the six dimensions related to the client-therapist interaction. The measurement of expectations in the domains assessed added little value as expectations were universally high. Criteria related to outcomes and the client-therapist interaction were the most frequently reported contributors to previous dissatisfaction.     

Rheumatology: a study of patient satisfaction with follow-up monitoring care

Background. This paper reports the findings of a quantitative study to determine the satisfaction of rheumatology patients receiving follow‐up monitoring care within primary and secondary locations. Aims and objectives. The aim of the study was to compare and contrast the satisfaction of patients with rheumatoid arthritis following two different routes of care. The objective was to explore the dimensions of care identified in an earlier qualitative study. Design. A convenience sample of 80 participants was used; 40 from each care location. Methods. Data were collected using the Leeds Satisfaction Questionnaire, which explores the dimensions of satisfaction previously identified as being important to this group of patients. Results. The secondary care group showed significantly higher levels of satisfaction in respect of general satisfaction, provision of information and continuity of care and a significant difference in relation to empathy, technical ability and attitude to the patient. Conclusions. While patients from both locations were satisfied with the care they received, those receiving specialist nursing care in the secondary location were more satisfied. Relevance to clinical practice. Increased emphasis on care in the community and the evolution of nurse specialist roles indicate the need for further qualitative work to inform the future planning of care provision for rheumatology patients in this area.     

EfCCNa survey: European intensive care nurses' attitudes and beliefs towards end-of-life care

Background: Available literature suggests that critical care nurses have varied experiences in relation to end‐of‐life (EOL) care. Few studies have examined the involvement of European intensive care nurses’ involvement in EOL care decisions and the extent to which their nursing practice is based on shared beliefs, experiences and attitudes. Aim: To investigate experiences and attitudes of European intensive care nurses regarding EOL care. Methods: Using a survey method, delegates (n = 419) attending an international critical care nursing conference were invited to complete a self‐administered questionnaire about their involvement with EOL care practices. The questionnaire composed of 45 items and was available in three European languages. Results: A total of 164 questionnaires were completed, yielding a response rate of 39%. The majority of respondents (91·8%) indicated direct involvement in EOL patient care, while 73·4% reported active involvement in decision‐making process. 78·6% of respondents expressed commitment to family involvement in EOL decisions, however only 59·3% of the participants said that this was routinely undertaken (p < 0·0005, Z = ?4·778). In decisions to withdraw or withhold therapy, 65% would decrease the flow of inspired oxygen, 98·8% provide continuous pain relief and 91·3% endorse open visiting. The majority (78%) disagreed that dying patients should be transferred to a single room. A division of views was observed in relation to 44% agreeing that patients should be kept deeply sedated and equal numbers contesting the continuation of nutritional support (41·6% versus 42·3%). Conclusions: The involvement of European intensive care nurses in EOL care discussions and decisions is reasonably consistent with many engaged in initiating dialogue with coworkers. In general, views and experiences of EOL care were similar, with the exception of the provision of nutrition and use of sedation. Relevance to practice: Use of formal guidelines and education may increase nurses’ involvement and confidence with EOL decisions.     

北京市优质护理服务患者满意度调查分析

目的调查“优质护理服务示范工程”活动实施后出院患者对护理工作的满意度现状。方法采用患者对护理工作的满意度问卷对北京市11所“优质护理服务示范工程”重点联系医院的606名出院患者进行电话回访。结果患者对护理工作的总体满意度得分为（9．23±1．11）分,得分最高的方面为帮助的及时性（9．43±1．15）分,得分最低的方面为生活护理（8．99±1．97）分。结论“优质护理服务示范工程”活动实施以来,患者对护理工作总体满意度较高,但仍存在不足之处,可进一步完善并推广。     

Knowledge and beliefs about end-of-life care and the effects of specialized palliative care: a population-based survey in Japan

To clarify the knowledge and beliefs of the Japanese general population related to legal options, pain medications, communication with physicians, and hydration/nutrition in end-of-life care, and to explore the associations between end-of-life care they had experienced and these beliefs, a questionnaire survey was conducted on two target populations: 5000 general population subjects and 866 bereaved family members of cancer patents who died in 12 palliative care units in Japan. The respondents were requested to report the legal knowledge about end-of-life options, pain-related beliefs, communication-related beliefs, and hydration/nutrition-related beliefs, and their experiences with end-of-life care. A total of 3061 responses were analyzed (effective response rate, 54%). The respondents were classified into six groups: no bereavement experience (n = 949), those who had lost family members within the past 10 years from noncancer diseases at institutions (n = 673), those who lost family members from noncancer disease at home (n = 264), those who lost family members from cancer at institutions other than palliative care units (n = 525), those who lost family members from cancer at home (n = 86), and those who lost family members from cancer at palliative care units (n = 548). Across groups, 32-45% and 50-63% of the respondents stated that treatment withdrawal and double effect act were legal, respectively. Between 34% and 44% believed that cancer pain is not sufficiently relieved, 27-38% believed that opioids shorten life, and 24-33% believed that opioids cause addiction. Communication-related beliefs potentially resulting in barriers to satisfactory end-of-life discussion were identified in 31-40% ("physicians are generally poor at communicating bad news") and in 14-25% ("physicians are not comfortable discussing death"). The bereaved family members of the patients who died in palliative care units were significantly more likely than the other groups to believe that cancer pain is sufficiently relieved, and significantly less likely to believe that opioids shorten life, that opioids cause addiction, that physicians are generally poor at communicating bad news, and that physicians are uncomfortable discussing death. Between 33% and 50% of the respondents, including families from palliative care units, believed "artificial hydration should be continued as the minimum standard until death," while 15-31% agreed that "artificial hydration relieves patient symptoms." A significant proportion of the Japanese general population has beliefs about legal options, pain medications, and communication with physicians that potentially result in barriers to quality end-of-life care. As their experiences in specialized palliative care significantly influenced their belief, systematic efforts to spread quality palliative care activity are of value to lessen these barriers and achieve quality end-of-life care.