Bereaved family members' assessments of the quality of end-of-life care: what is important?

Families of patients are well poised to comment on the end-of-life (EOL) care received by those patients and can provide feedback to care providers and decision makers. To better understand family-member evaluations of the quality of in-patient EOL care, this study draws on qualitative interview data (n = 24) to identify core aspects of EOL care that are important for family members. Based on this analysis, a conceptual framework of family members' assessments of their experiences with EOL health care services is developed. Findings suggest the need to distinguish between perceived substantive or tangible features of received care, interpretations of the causes and symbolic meanings of that care, and personal and affective outcomes. Practitioners are encouraged to reflect on how behaviours and communications may be interpreted by families. Attention also needs to be given to the changes in practice and organizational decision making that can facilitate more positive experiences for families and patients.     

Evaluation of the end-of-life nursing education consortium project in the USA

Care of patients at the end of life is contingent on adequate preparation of health care providers. Nursing, as the predominant caring profession in end-of-life (EOL) care, must achieve competence in physical and psychosocial care of patients and families facing terminal illness. Previous research has demonstrated that nursing education has not prepared nurses to provide optimum EOL care. To date, there has not been a unified or organized effort to broadly address the preparation of nurses in EOL care. This article describes one national project, the End-of-Life Nursing Education Consortium (ELNEC), which was developed as a comprehensive effort to improve EOL care by nurses in the United States. The ELNEC project consists of EOL education for various nursing audiences: the undergraduate faculty; continuing education providers; paediatrics; oncology; and the graduate faculty. This organized effort is a major step towards strengthening nursing knowledge in EOL care to improve care of the dying.     

A rapid scoping review of end-of-life conversations with frail older adults in Canada

ObjectiveTo explore what is known about end-of-life (EOL) conversations with frail older adults across all settings including primary care in Canada, and to understand the barriers to, and recommendations for, EOL conversations.Data sourcesComprehensive searches were conducted in CINAHL (EBSCO), Embase (Ovid), MEDLINE (Ovid), AgeLine (EBSCO), Sociological Abstracts (ProQuest), and Applied Social Sciences Index and Abstracts (ProQuest). Searches used text words and subject headings (eg, MeSH, Emtree) related to 3 concepts: frailty, Canada, and EOL conversations.Study selectionTwenty-one English-language articles were selected (ie, 4 reviews, 10 commentaries, 3 quantitative studies, 3 qualitative studies, 1 mixed-methods study) that included information about EOL conversations with frail older adults in the Canadian health care context.SynthesisIn terms of having EOL conversations with frail older adults, this study found that many clinicians do not often and adequately discuss frailty and impending death with their older patients. Moreover, patients and their care partners do not have enough knowledge about frailty and death to make informed EOL decisions, leading to patients choosing more aggressive therapies instead of care focused on symptom management. In terms of barriers to EOL discussions, common barriers included a lack of trust between clinician and patient, inadequate EOL training for clinicians, and ineffective clinician communication with patients and families. Recommendations for improving EOL conversations include regular screening for frailty to prompt conversations about care and the use of an interprofessional approach.ConclusionMore empirical research is needed that uses exploratory methods to shed light on the contextual factors that may act as a barrier to EOL conversations. More research is also needed on the roles and responsibilities of interprofessional teams in screening for frailty and engaging in EOL conversations. Moreover, there is a need to better understand how frail older patients and their families want EOL conversations to unfold and what best facilitates these conversations.     

Communication about palliative care for patients with chronic obstructive pulmonary disease

Chronic obstructive pulmonary disease (COPD) is a leading cause of mortality and disability worldwide. For many patients, maximal therapy for COPD produces only modest relief of disabling symptoms and these symptoms result in a significantly reduced quality of life. Despite the high morbidity and mortality, patients with COPD do not receive adequate palliative care. One reason these patients may receive poor quality palliative care is that patient-physician communication about palliative and EOL care is unlikely to occur. The purpose of this review is to summarize recent research regarding patient-physician communication about palliative care for patients with COPD. Understanding the barriers to this communication may be an important step to improving communication about EOL care and improving patient-centred outcomes. Two areas that may influence the quality of care received by patients with COPD are also highlighted: 1) the role of depression, a common problem in patients with COPD, in physician-patient communication; and 2) the role of advance care planning in this communication. Further research is needed to develop and test interventions that can enhance patient-physician communication about palliative and EOL care for patients with COPD, and we describe our perspective on a research agenda in each area.     

Introduction of novice oncology nurses to end-of-life care

Dying patients and their families often have unique physical, psychosocial, social, and spiritual needs that require special ized end-of-life (EOL) skills. EOL preparation of nurses has been inconsistent. Novice nurses need guidance to develop the knowledge, clinical skills, and coping strategies to provide high-quality and compassionate EOL care. Inadequate preparation for providing EOL care can lead to anxiety, stress, and burnout. Barriers that prevent adequate preparation and support of novice nurses in EOL care include lack of education, financial constraints, poor staffing, and major life changes. However, opportunities are available to support novice oncology nurses as they develop the skills necessary to provide competent EOL care. Nurse extern programs and individually tailored orientation plans that include EOL care should be developed. Careful selection of mentors and preceptors is an important aspect in planning orientation for novice oncology nurses. The presence of peers experienced in EOL care is crucial. Educational materials, standards of practice, and continuing education on EOL care should be available to novice nurses as well. EOL competencies may provide a blueprint to help with performance evaluations. Adequate preparation of novice oncology nurses for EOL care will improve patient outcomes, increase job satisfaction, and promote longevity in the specialty.     

Quality of death: assessing the importance placed on end-of-life treatment in the intensive-care unit

CONTEXT: The value of good end-of-life (EOL) care could be underestimated if its effects are assessed using the standard metric of quality-adjusted survival, especially if the time horizon is limited to the duration of the EOL care. This issue is particularly problematic in the intensive-care unit (ICU) where death is frequent, care is difficult, and costs are high. OBJECTIVES: The objectives of this study were to test whether people would trade healthy life expectancy for better EOL care, to understand how much life expectancy they would trade relative to domains of good care, and to determine the association of respondent characteristics to time traded. DESIGN AND SUBJECTS: We used a computerized survey instrument describing hypothetical patient experiences in the ICU used to assess attitudes of a general population sample (n = 104) recruited in Pittsburgh, Pennsylvania. MEASURES: We used life expectancy traded (from a baseline of 80 healthy years followed by a 1-month fatal ICU stay) for improving ICU care in 4 domains: pain and discomfort, daily surroundings, treatment decisions, and family support. RESULTS: Three fourths of respondents (n = 78) were prepared to shorten healthy life for better EOL care. Median time traded in individual domains ranged from 7.2 to 7.7 months overall and 9.6 to 11.4 months when restricted to those willing to trade. Median time traded for improvement in all domains was 8.3 months overall and 24.0 months by those willing to trade. In multivariable analyses, respondents who were older, nonwhite, or had children traded significantly less time, whereas those who did not perceive the ICU to be a caring environment traded more time. CONCLUSIONS: Good EOL care is highly valued, both in terms of medical and nonmedical domains, as suggested by previous work and confirmed by our data showing respondents trading quantities of healthy life several times longer than the duration of the EOL period itself. The considerable interperson variation highlights the importance of soliciting individual preferences about EOL care.     

Oncologic Emergencies: Palliative Care in the Emergency Department Setting

BackgroundPalliative care is an essential component of emergency medicine, as many patients with terminal illness will present to the emergency department (ED) for symptomatic management at the end of life (EOL).ObjectiveThis narrative review evaluates palliative care in the ED, with a focus on the literature behind management of EOL symptoms, especially dyspnea and cancer-related pain.DiscussionAs the population ages, increasing numbers of patients present to the ED with severe EOL symptoms. An understanding of the role of palliative care in the ED is crucial to effectively communicating with these patients to determine their goals and provide medical care in line with their wishes. Beneficence, nonmaleficence, and patient autonomy are essential components of palliative care. Patients without medical decision-making capacity may have an advance directive, do not resuscitate or do not intubate order, or Portable Medical Orders for Life-Sustaining Treatment available to assist clinicians. Effective and empathetic communication with patients and families is vital to EOL care discussions. Two of the most common and distressing symptoms at the EOL are dyspnea and pain. The most effective treatment of EOL dyspnea is opioids, with literature showing little efficacy for other therapies. The most effective treatment for cancer-related pain is opioids, with expeditious pain control achievable with a rapid fentanyl titration. It is also important to address nausea, vomiting, and secretions, as these are common at the EOL.ConclusionsEmergency clinicians play a vital role in EOL patient care. Clear, empathetic communication and treatment of EOL symptoms are essential.     

A critical discourse analysis of provision of end-of-life care in key UK critical care documents

This article highlights certain practical and professional difficulties in providing end-of-life (EOL) care for patients in critical care units and explores discourses arising from guidelines for critical care services. BACKGROUND: A significant number of patients die in critical care after decisions to withdraw or withhold treatment. Guidelines for provision of critical care suggest, wherever possible, moving patients out of critical care at the EOL. This may not necessarily be conducive to a 'good death' for patients or their loved ones. There is a moral responsibility for both nurses and doctors to ensure that decision-making around EOL issues is sensitively implemented, that decisions about care includes families, patients when able, nurses and doctors, and that good EOL care is provided. METHODS: A critical discourse analysis (CDA) of four key UK critical care documents published since 1996. FINDINGS AND RECOMMENDATIONS: The key documents give little clear guidance about how to provide EOL care in critical care. Discourses include the power dynamic in critical care between professions, families and patients, and how this impacts on provision of EOL care. Difficulties encountered include dilemmas at discharge and paternalism in decision-making. The technological environment can act as a barrier to good EOL care, and critical care nurses are at risk of assuming the dominant medical model of care. Nurses, however, are in a prime position to ensure that decision-making is an inclusive process, patient needs are paramount, the practical aspects of withdrawal lead to a smooth transition in goals of care and that comfort measures are implemented.     

End-of-life competencies and the NCLEX-RN examination.

With the aging of the population, health care workers must be prepared to deal with clients and families facing end-of-life (EOL) issues. Nurses, as one of the primary providers of care and the largest professional group to provide care, can make a significant impact on EOL care. This article uses 15 nursing competencies that have been identified as important in providing high-quality care to clients and the families of clients at the end of life and delineates where these competencies are addressed in the 1998 NCLEX-RN Test Plan. Available resources that provide information on EOL content are mentioned as well as how to become involved in the NCLEX item development process.     

Conflicts of interest in the context of end of life care for potential organ donors in Australia

End-of-life (EOL) care has become an integral part of intensive care medicine and includes the exploration of possibilities for deceased organ and tissue donation. Donation physicians are specialist doctors with expertise in EOL processes encompassing organ and tissue donation, who contribute significantly to improvements in organ and tissue donation services in many countries around the world. Donation physicians are usually also intensive care physicians, and thus they may be faced with the dual obligation of caring for dying patients and their families in the intensive care unit (ICU), whilst at the same time ensuring organ and tissue donation is considered according to best practice. This dual obligation poses specific ethical challenges that need to be carefully understood by clinicians, institutions and health care networks. These obligations are complementary and provide a unique skillset to care for dying patients and their families in the ICU.In this paper we review current controversies around EOL care in the ICU, including the use of palliative analgesia and sedation specifically with regards to withdrawal of cardiorespiratory support, the usefulness of the so-called doctrine of double effect to guide ethical decision-making, and the management of potential or perceived conflicts of interest in the context of dual professional roles.     

Resource use and costs of end-of-Life/palliative care: Ontario adult cancer patients dying during 2002 and 2003

The objective of this study is to estimate the direct medical cost of end-of-life and palliative (EOL/PAL) care for cancer patients during the last six months of their lives--or, during the period from diagnosis to death, if briefer--in 2002 and 2003, in Ontario, Canada. A linkage of cancer registry and administrative data is used to determine the costs of health care resources used during the EOL/PAL care period. Costs are analyzed by cancer diagnosis, location of death, and type of service. The total Ontario Ministry of Health-funded cost of EOL/PAL care for cancer patients is estimated to be about CAD$544 million per year, with an average per patient cost of about $25,000 in 2002-2003. Our results suggest that acute care consumes 75 percent of EOL/PAL funding and that only a small proportion of health care services used by EOL/PAL care cancer patients is likely to be formal palliative care.     

Emergency Nurses’ Department Design Recommendations for Improved End-of-Life Care

IntroductionAlthough death is common in emergency departments, there is limited research regarding ED design as an obstacle to end-of-life care. This study identifies emergency nurses’ recommendations regarding ways designs have negative or positive impact on care for dying patients and their families.MethodsA 25-item questionnaire was sent to a national random sample of 500 emergency nurses. Inclusion criteria were nurses who could read English, worked in emergency departments, and had cared for at least 1 patient at the end of life (EOL). Responses were individually reviewed and coded.ResultsMajor obstacles included (1) issues related to limited space, (2) poor department layout and design, and (3) lack of privacy. Despite emergency departments being a challenging place to provide EOL care, positive ED design characteristics had impact on EOL care.DiscussionEmergency nurses understand the need for family presence during resuscitation, for secure body stowage areas, and for more resuscitation rooms so that families have time to grieve before being removed because of the immediate needs of a second trauma patient. Nurses can evaluate existing facilities to identify areas in which potential change and remodeling could improve care, increase patient privacy, or further utilize space.Understanding ED design’s impact on EOL care is crucial. Modifications to ED layout and design may be challenging; however, improvements to space, layout, and privacy need to be considered when planning new emergency departments or remodeling existing departments. Further research is required to determine the impact of ED design on EOL care.     

End-of-Life Care in Italian Hospitals: Quality of and Satisfaction With Care From the Caregivers' Point of View—Results from the Italian Survey of the Dying of Cancer

ContextA number of studies have highlighted the poor quality of end-of-life (EOL) care provided in hospital settings, leading to a reduction in the quality of EOL care and increase in patient and caregiver dissatisfaction levels.ObjectivesThe aims of this study were the evaluation of the prevalence of major symptoms, treatment, outcomes, information, and care provided to dying cancer patients in Italian hospitals; and an analysis of clinical and socio-demographic factors associated with caregiver satisfaction with the health care provided.MethodsThis is a mortality follow-back survey of 2,000 cancer deaths representative of the country. Caregivers were interviewed about patients' experiences by using a tailored version of the View of Informal Carers—Evaluation of Services questionnaire.ResultsValid interviews were obtained for 84% (n = 364) of the cancer patients who died in hospital. Most Italian cancer patients dying in hospital suffered from a number of untreated or poorly treated symptoms, and only a few reported an acceptable control over physical suffering. Moreover, only two-thirds of patients and one-third of caregivers received basic information on therapies and care. About one-third of the caregivers expressed dissatisfaction with the health care received. The probability of being satisfied was more likely for caregivers of patients living in the north of Italy; caregivers of patients who had not experienced or were only slightly distressed by fatigue; and caregivers who were generally satisfied with hospital facilities and when the health care professionals had provided appropriate information to both patients and caregivers.ConclusionThis study revealed poor quality of EOL care in Italian hospitals, with almost one-third of the caregivers expressing their clear dissatisfaction. A national policy is, therefore, urgently called for to improve the quality of EOL care in Italian hospitals.     

Strengthening nursing education to improve end-of-life care

The survey results provide future direction for nursing education. Results indicate an awareness in the nursing profession of the need for improved EOL care and identification of resources to achieve that goal. Many activities have been initiated within the nursing community, and the results of this project hopefully will stimulate additional activities. The imperative for improved EOL care will escalate in the future as our elderly population grows and a burdened health care system confronts the costs of chronic and terminal illness. Palliative care, which has traditionally been limited to hospice programs, must extend to other settings and be incorporated into the trajectory of care. The IOM report and other palliative care literature asserts that improved care for the dying will necessitate change at many levels. Patients and the general public must be educated to expect a higher standard of care at the EOL. Health care system changes are needed to improve access to care and to eliminate barriers such as regulatory constraints on prescribing opioids. However, central to all health care reform is the need for educated professionals to direct this change. As professionals dedicated to patient comfort and quality of life--even at the EOL, nurses should begin the revolution in EOL care by attending to the education of nurses.     

Quality of care for residents dying in Ontario long-term care facilities: findings from a survey of directors of care

The purpose of this study was to collect information on the practice of end-of-life (EOL) care in long-term care (LTC) facilities in the Province of Ontario, Canada. A cross-sectional survey of directors of care in all licensed LTC facilities in the province was conducted between September 2003 and April 2004. Directors of care from 426 (76% response rate) facilities completed the postal survey questionnaire. The survey results identified communication problems between service providers and families, inadequate staffing levels to provide quality care to dying residents, and the need for training to improve staff skills in providing EOL care. Directors of care endorsed the use of a number of strategies that would improve the care of dying residents. Logistic regression analysis identified the eight most important items predictive of facility staff having the ability to provide quality EOL care. The findings contribute to the current discussion on policies for meeting the care needs of residents in LTC facilities until life's end.     

Physicians' interactions with health care teams and systems in the care of dying patients: perspectives of dying patients,family members,and health care professionals

This study investigated the specific physician skills required to interact with health care systems in order to provide high quality care at the end of life. We used focus groups of patients with terminal diseases, family members, nurses and social workers from hospice or acute care settings, and physicians. We performed content analysis based on grounded theory. Groups were interviewed. Two domains were found related to physician interactions with health care systems: 1) access and continuity, and 2) team communication and coordination. Components of these domains most frequently mentioned included taking as much time as needed with the patient, accessibility, and respect shown in working with health team members. This study highlights the need for both physicians and health care systems to improve accessibility for patients and families and increase coordination of efforts between health care team members when working with dying patients and their families.     

Responding to SUPPORT: an academic medical center examines its end-of-life care practices. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments

The purpose of this exploratory study was to examine the end-of-life (EOL) care rendered to patients and families within a large midwestern academic medical center during a recent one-year period. An investigator-developed audit tool was used to review the final hospitalization records of 100 patients. Data were collected regarding demographic variables, final hospitalization, medical diagnoses and histories, and documented end-of-life care. Major findings included a majority of deaths occurring within medical services on critical care units, a frequent short length of stay, a majority of Do Not Resuscitate or Withdrawal of Support orders being written 1-3 days prior to death, an unstable health status prior to admission, and presence of at least one significant chronic illness in the past medical history. Findings are being used to address EOL care related issues within the institution.     

End of life care pathways in the Emergency Department and their effects on patient and health service outcomes: An integrative review

IntroductionEnd of life (EOL) care in the Emergency Department (ED) requires focused, person-centred care to meet the needs of this vulnerable cohort of patients.MethodsAn integrative review of the literature using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guideline was conducted. Studies were included if they were primary research relating to patients in the ED at the EOL, and/or evaluated EOL care pathways in the ED. Databases OVID Emcare, OVID Medline, and Scopus were searched from 1966-September 2021; followed by screening and appraisal. Articles were compared and data grouped into categories.ResultsEleven research articles were included generating three categories for EOL care in ED. 1) tools/criteria to identify patients who may require EOL care in ED; 2) processes for providing EOL care, and 3) implementation methods/frameworks to support the uptake of EOL care processes.ConclusionThere were some commonalities in the criteria used to identify patients who may be at their EOL and the interventions implemented thereafter. There was no standardised process for screening for or treating EOL care needs in the ED. Further research is required to determine the impact that EOL care pathways have on patient and health service outcomes to inform strategies for future policy development.     

Family centred neonatal palliative care in children's hospices: A qualitative study of parents' experiences

Since 1982, children's hospices in the UK have provided services where families can care for their children at the end of life (EOL) in a less medicalised environment. More recently, the services of many children's hospices have extended to newborn babies and their families. This paper explores the experiences of three families (five parents) who availed of children's hospices services when their babies required a palliative approach to care. Early diagnosis of a life-limiting condition in pregnancy allowed advanced care planning and enabled parental participation in decision-making before birth. A homely environment, as well as constant support and a sensitive approach from expert staff encouraged parental involvement in all aspects of their baby's care whilst in hospice. Extended time with their baby after death enabled parents to feel connected with their infant. The holistic and family-centred approach to care from children's hospices is highly valued by parents of newborn babies.