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.     

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.     

A model for increasing palliative care in the intensive care unit: enhancing interprofessional consultation rates and communication

Background

Only a minority of patients who die in the medical intensive care unit (MICU) receive palliative care services. At the South Texas Veterans Health Care System Audie L. Murphy Hospital, only 5% of patients who died in the MICU from May to August 2010 received a palliative care consultation.

Measures

We measured the percentage of MICU patients for which there was a palliative care consultation during the intervention period.

Intervention

Starting October 1, 2010 and ending April 30, 2011, the palliative care and MICU teams participated in daily “pre-rounds” to identify patients at risk for poor outcomes, who may benefit from a palliative care consultation.

Outcomes

Palliative care consultation increased significantly from 5% to 59% for patients who died in the MICU during the intervention period. Additionally, palliative care consultation increased from 5% to 21% for all patients admitted to the MICU during the intervention period.

Conclusions/Lessons Learned

Daily pre-rounds between the palliative care and MICU teams increased palliative care services for MICU patients at risk for poor outcomes, who may benefit from a palliative care consultation.     

Implementation of the victoria bowel performance scale

Context

There is a lack of evidence to guide constipation management in patients receiving palliative care. Data collection requires the systematic use of validated assessment tools.

Objectives

The objective of this study was to assess the usefulness of the Victoria Bowel Performance Scale (BPS) as an audit tool.

Methods

Charts were reviewed before and after the implementation of a program to monitor constipation through repeated use of the Victoria Bowel Scale. The program was initiated at three oncology pain and symptom management clinics, four palliative care units, and four residential hospices. An additional “control” palliative care unit introduced new nursing assessment tools without the new scale.

Results

The Victoria BPS was recorded at 86% of 192 postimplementation outpatient clinic visits and was easy to use in this setting. Documentation of bowel performance at comparable visits improved from 44% to 66% (P < 0.001), and the frequency of changes to laxatives increased from 14% to 39% of visits (P < 0.001). The scale was completed on 21%–55% of inpatient days, and variations in the proportion of recordings being rated as satisfactory between −1 and +1 (possible range from −4 to +4) revealed important deficiencies in bowel care, which led to change in management.

Conclusion

The Victoria BPS was found to be an acceptable and a useful bowel function assessment tool, uniquely incorporating the patient’s usual bowel function. Modifications to the scale have been made to improve clarity and allow for the expected drop in bowel activity seen in end-of-life care. Considerable educational effort and appropriate organization of the charts are required for optimal implementation. The proportion of revised BPS scores ranging from −1 to +1 is proposed as an indicator of satisfactory bowel management for clinical, audit, and research purposes.     

Hospice referrals and code status: outcomes of inpatient palliative care consultations among Asian Americans and Pacific Islanders with cancer

Context

Intensive palliative care consultations for plan of care may reduce racial differences in end-of-life care.

Objectives

To compare cancer patients' hospice referrals and code status changes after inpatient palliative care consultations by patient ethnicity and consultation intensity.

Methods

This observational cohort study prospectively recorded data for all adult cancer patients receiving palliative care consultations at the largest teaching hospital in Hawaii from 2005 through 2009. Chi-squared analyses compared hospice referral and code status changes with “Do Not Attempt Resuscitation” by patient characteristics and consultation intensity (more intensive plan of care vs. pain and/or symptom management without plan of care). Multiple logistic regression models analyzed factors associated with hospice referral and code status change.

Results

The 1362 consultations generated 454 (33.3%) hospice referrals and 234 (17.2%) code status changes. Controlling for age, gender, Karnofsky score, and preconsultation hospital days, Asian, Pacific Islander, and “other” ethnicities demonstrated increased likelihood of hospice referral vs. whites (adjusted odds ratios [AORs] 1.46-2.34, P < 0.05). Intensive plan-of-care consultations were strongly associated with hospice referral (AOR 3.08, 95% confidence interval [CI] 2.33-4.07, P < 0.0001). Controlling for consultation intensity reduced the association between ethnicity and hospice referral (AORs 1.35-2.06, P = 0.03, “other” ethnicity; P = nonsignificant, Asian and Pacific Islander). Intensive consultations were strongly associated with code status change (AOR 2.96; 95% CI 2.08-4.22, P < 0.0001). Ethnicity was not significantly associated with code status change.

Conclusion

Consultation intensity was the strongest predictor of hospice referrals and code status changes and reduced the ethnic variations associated with hospice referral.     

The impact of an educational intervention on nursing staff ratings of quality of older people care: a prospective, controlled intervention study

Background

Low competence levels among nursing staff have been associated with lower quality of older people care. However, interventions to improve staff competence have not always been evaluated for their impact on the quality of older people care. An educational intervention in the form of a workplace “toolbox” was shown to have positive effects on nursing staff competence and work satisfaction, but had no effects on care recipients’ or their family members’ ratings of quality of care. It was therefore of interest to investigate whether the intervention had any effect on nursing staff ratings of quality of care.

Objectives

The aim of the study was to evaluate the possible effects of an educational “toolbox” intervention on nursing staff ratings of quality of care.

Design

A prospective, non-randomized, controlled intervention.

Participants and settings

Nursing staff in two municipal older people care organizations in Sweden.

Methods

Practical instruments and educational materials for improving staff competence and work practices were collated in a workplace “toolbox” and introduced in the intervention organization in February of 2003. Nursing staff ratings of quality of care were measured pre- and post-intervention by questionnaire and compared to nurses’ quality ratings in a reference organization, where no toolbox was introduced.

Results

Nursing staff ratings of quality of care improved significantly over time in the intervention organization. No improvements were found in the reference organization.

Conclusions

Compared to a reference municipality, nursing staff ratings of quality of care improved in the organization where the toolbox was introduced. Competence development measures may have a positive impact on nursing staff's ratings of quality, but not on the quality ratings of care recipients and their family members. Further research is needed to understand the differences in these stakeholders’ perceptions.     

Factors related to the acceptance of home care and nursing homes among older Egyptians: A cross-sectional study

Background

Socio-demographic changes may deprive older Egyptians from receiving care by family members and raise the question of how they react if they become dependent on help.

Objective

The objective of this study was to determine factors related to the acceptance of home care and nursing homes among older Egyptians.

Design

A two group comparative design based on self-reports.

Participants

The sample was composed of 344 older persons receiving home care or staying in a nursing home and 267 non-care recipients.

Setting

The study was conducted in Greater Cairo.

Methods

Factors related to the acceptance of home care and nursing homes were determined separately for each group by logistic regression.

Results

Lesser feelings of shame while receiving care from non-family members were related to an increased acceptance of both kinds of care. For non-care recipients disagreement to the traditional idea of family care had a similar effect. For care recipients the experience made with a particular kind of care was strongly related to its acceptance.

Discussion

Home care is a new phenomenon in Cairo and in contrast to nursing homes it was unknown to most study participants. For this reason any conclusion about which kind of service is preferred by older Egyptians would be a premature one.

Conclusion

Feelings of shame while receiving care from a non-family member are more important than functional limitations when older Egyptians are considering the options of home care and nursing homes.     

Australia's health care reform agenda: Implications for the nurses’ role in chronic heart failure management

Introduction

The importance of the nursing role in chronic heart failure (CHF) management is increasingly recognised. With the recent release of the National Health and Hospitals Reform Commission (NHHRC) report in Australia, a review of nursing roles in CHF management is timely and appropriate.

Aim

This paper aims to discuss the implications of the NHHRC report and nursing roles in the context of CHF management in Australia.

Method

The electronic databases, Thomson Rheuters Web of Knowledge, Scopus and the Cumulative Index to Nursing and Allied Health Literature (CINAHL), were searched using keywords including; “heart failure”, “management”, “Australia” and “nursing”. In addition policy documents were reviewed including statements and reports from key professional organisations and Government Departments to identify issues impacting on nursing roles in CHF management.

Results

There is a growing need for the prevention and control of chronic conditions, such as CHF. This involves an increasing emphasis on specialist cardiovascular nurses in community based settings, both in outreach and inreach health service models. This review has highlighted the need to base nursing roles on evidence based principles and identify the importance of the nursing role in coordinating and managing CHF care in both independent and collaborative practice settings.

Conclusion

The importance of the nursing role in early chronic disease symptom recognition and implementing strategies to prevent further deterioration of individuals is crucial to improving health outcomes. Consideration should be given to ensure that evidence based principles are adopted in models of nursing care.     

General Practitioner Awareness of Preferred Place of Death and Correlates of Dying in a Preferred Place: A Nationwide Mortality Follow-Back Study in The Netherlands

To improve the quality of end-of-life care, general practitioner (GP) awareness of where their patients prefer to die is important. To examine GP awareness of patients' preferred place of death (POD), associated patient- and care-related characteristics, and the congruence between preferred and actual POD in The Netherlands, a mortality follow-back study was conducted between January 2005 and December 2006. Standardized registration forms were used to collect data on all nonsudden deaths (n = 637) by means of the Dutch Sentinel Network, a nationally representative network of general practices. Forty-six percent of patients had GPs who were not aware of their preferred POD. Of those whose GPs were aware, 88% had preferred to die in a private or care home, 10% in a hospice or palliative care unit, and 2% in a hospital. GPs were informed by the patients themselves in 84% of cases. Having financial status “above average,” a life-prolongation or palliative care goal, and using specialist palliative care services were associated with higher GP-awareness odds. Four-fifth of patients with known preferred POD died there. There is a potential for improving GP awareness of patients' preferred POD. Such awareness is enhanced when palliation is an active part of end-of-life care. The hospital is the POD least preferred by dying patients.     

Causes of Hospital Admissions in Domus: A Randomized Controlled Trial of Specialized Palliative Cancer Care at Home

Context

Avoidable hospital admissions are important negative indicators of quality of end-of-life care. Specialized palliative care (SPC) may support patients remaining at home.

A shared care model pilot for palliative home care in a rural area: impact on symptoms, distress, and place of death

Context

Shared care models integrating family physician services with interdisciplinary palliative care specialist teams are critical to improve access to quality palliative home care and address multiple domains of end-of-life issues and needs.

Objectives

To examine the impact of a shared care pilot program on the primary outcomes of symptom severity and emotional distress (patient and family separately) over time and, secondarily, the concordance between patient preferences and place of death.

Methods

An inception cohort of patients (n = 95) with advanced, progressive disease, expected to die within six months, were recruited from three rural family physician group practices (21 physicians) and followed prospectively until death or pilot end. Serial measurement of symptoms, emotional distress (patient and family), and preferences for place of death was performed, with analysis of changes in distress outcomes assessed using t-tests and general linear models.

Results

Symptoms trended toward improvement, with a significant reduction in anxiety from baseline to 14 days noted. Symptom and emotional distress were maintained below high severity (7-10), and a high rate of home death compared with population norms was observed.

Conclusion

Future controlled studies are needed to examine outcomes for shared care models with comparison groups. Shared care models build on family physician capacity and as such are promising in the development of palliative home care programs to improve access to quality palliative home care and foster health system integration.     

Predictors of home death of home palliative cancer care patients: a cross-sectional nationwide survey

Objectives

To identify factors influencing the place of death among home palliative cancer care patients, focusing on the role of nurses in terms of pre- and post-discharge from hospital to home care settings.

Design, settings and participants

A cross-sectional nationwide questionnaire survey was conducted at 1000 randomly selected homecare agencies in Japan. The questionnaires were completed by primary community nurses of home palliative patients just after their discharge. A total of 568 responses were analyzed (effective response rate, 69%).

Results

Multivariate logistic regression analysis revealed the following independent factors of place of death among those patients: desire for home death at referral by both patient and family caregiver; caregiver relationship to patient as daughter or daughter-in-law; totally bedridden functional status of patient; patient not suffering from depression and/or anxiety at referral; patients and caregivers duly informed about the dying process/death in detail, as well as instructed by community nurses about pain management and how to treat/prevent bedsores in home care settings.

Conclusions

This study demonstrated the importance of both the hospital and community nurses’ role in increasing the patients’ chance of dying at home. Hospital nurses should support early transfer to home palliative care according to their assessment of the desire of patient/family caregiver for home death, the patients’ clinical status, and caregivers’ ability to provide patient care at home. Community nurses should inform patients/family caregiver in detail about the dying process/death just after discharge, relieve patient pain, treat/prevent bedsores, and instruct family caregivers on their symptom control.     

The Impact of Supporting Family Caregivers Before Bereavement on Outcomes After Bereavement: Adequacy of End-of-Life Support and Achievement of Preferred Place of Death

Context

The investigation of the situation of bereaved family caregivers following caregiving during the end-of-life phase of illness has not received enough attention.

Palliative care needs and symptom patterns of hospitalized elders referred for consultation

Context

To provide effective palliative care (PC) to the geriatric population, an understanding of the reasons for consultation, main diagnoses related to referral, and symptom severity in chronic disease states is essential.

Objectives

We compared the baseline characteristics, referral patterns, and symptom severity among older and younger patients referred for inpatient PC consultation.

Methods

We conducted a retrospective review of 2382 inpatient PC consultations. We excluded “reconsultations” and patients under the age of 18. Patient characteristics (reason for consultation and diagnosis) and symptom severity were compared across three age groups: Younger, <65 years of age; Older, 65–84 years of age; and Oldest, 85 years of age and older. Multivariable logistic regression adjusted for the effects of gender, ethnicity, and diagnostic subset was performed.

Results

Most patients referred for inpatient PC consultation were older than the age of 65. Oldest patients were consulted on earlier and more often for “end-of-life care.” Oldest adults were less likely to report pain, anxiety, and nausea (adjusted odds ratios [AOR] of 0.25, 0.39, and 0.19, respectively) and more likely to report anorexia than Younger adults (AOR = 1.66). There was no clear difference between age groups in reporting of dyspnea and depression.

Conclusion

Older adults in need of PC appear to have symptom burdens and consultation referral patterns that are different from those of younger patients. Further research is needed to determine whether these symptom patterns are caused by psychosocial factors, whether these reflect true differences among age groups, and whether symptom measurement instruments should be tailored to patient age.     

A Prospective Cohort Study of Factors Associated With Place of Death Among Patients With Late-Stage Cancer in Southern Africa

Context

Identifying factors that affect terminally ill patients' preferences for and actual place of death may assist patients to die wherever they wish.

Temporal Trends Between 2010 and 2015 in Intensity of Care at End-of-Life for Patients With Chronic Illness: Influence of Age Under vs. Over 65 Years

Context

Recent analyses of Medicare data show decreases over time in intensity of end-of-life care. Few studies exist regarding trends in intensity of end-of-life care for those under 65 years of age.

Is integrated nursing home care cheaper than traditional care? A cost comparison

Background

It is generally assumed that integrated care has a cost-saving potential in comparison with traditional care. However, there is little evidence on this potential with respect to integrated nursing home care.

Aims and objectives

• • 

  To portray the costs of traditional and integrated nursing home care.

• • 

  To explore the cost-saving potential of integrated care.

Design/methods/settings/participants

Between 1999 and 2003, formal and informal caregivers of different nursing homes in the Netherlands recorded activities performed for residents with somatic or psycho-social problems. In total, 23,380 lists were analysed to determine the average costs of formal and informal care per activity, per type of resident and per nursing home care type. For formal care activities, the total personnel costs per minute (in Euro) were calculated. For informal care costs, two shadow prices were used.

Results

Compared to traditional care, integrated care had lower informal direct care costs per resident and per activity and lower average costs per direct activity (for a set of activities performed by formal caregivers). The total average costs per resident per day and the costs of formal direct care per resident, however, were higher as were the costs of delivering a set of indirect activities to residents with somatic problems.

Conclusions

The general assumption that integrated care has a cost-saving potential (per resident or per individual activity) was only partially supported by our research. Our study also raised issues which should be investigated in future research on integrated nursing home care.     

Impact of availability of an inpatient hospice unit on the parent hospital's quality of palliative care for Taiwanese cancer decedents, 2001-2006

Context

Hospice care has increasingly been shown to affect quality of palliative care at both the individual and institutional levels. However, an institutional effect has only been addressed in single comprehensive cancer centers/selected community hospitals.

Objectives

To investigate the impact of an inpatient hospice unit on the parent hospital’s quality of palliative care.

Methods

This was a retrospective cohort study using administrative data from the entire population of 204,850 Taiwanese pediatric and adult cancer patients who died in 2001–2006. Outcome variables were adjusted by multivariate logistic regression for five groups of confounding variables: 1) patient demographics and disease characteristics, 2) primary hospital characteristics, 3) primary physician specialty, 4) health care resources at the hospital and regional levels, and 5) historical trend.

Results

Taiwanese cancer patients who received primary care in a hospital with an inpatient hospice unit (whether or not they received hospice care) were significantly less likely to be intubated (adjusted odds ratio [AOR]: 0.71; 95% confidence interval [CI]: 0.58, 0.86) and use mechanical ventilation support (AOR: 0.70; 95% CI: 0.56, 0.87) in their last month of life. They also were more likely to use hospice care before death (AOR: 3.51; 95% CI: 1.57, 7.86). Furthermore, if they used hospice care, they tended to be referred earlier than cancer patients being cared for in a hospital without an inpatient hospice unit.

Conclusion

Integrating both acute care and palliative care approaches to caring for terminally ill cancer patients in the same hospital may influence the quality of palliative care throughout the hospital as evidenced by our findings that these patients have lower likelihood of being intubated with mechanical ventilation support in the last month of life, greater propensity to receive hospice care in the last year of life, and a trend toward earlier referral to hospice care. The generalizability of these results may be limited to patients who died of a noncancer cause and by the two groups not being exactly matched for patients’ characteristics.