Showing papers on "End-of-life care published in 2008"

Recommendations for end-of-life care in the intensive care unit: A consensus statement by the American College of Critical Care Medicine

Abstract: Background: These recommendations have been developed to improve the care of intensive care unit (ICU) patients during the dying process. The recommendations build on those published in 2003 and highlight recent developments in the field from a U.S. perspective. They do not use an evidence grading system because most of the recommendations are based on ethical and legal principles that are not derived from empirically based evidence. Principal Findings: Family-centered care, which emphasizes the importance of the social structure within which patients are embedded, has emerged as a comprehensive ideal for managing end-of-life care in the ICU. ICU clinicians should be competent in all aspects of this care, including the practical and ethical aspects of withdrawing different modalities of life-sustaining treatment and the use of sedatives, analgesics, and nonpharmacologic approaches to easing the suffering of the dying process. Several key ethical concepts play a foundational role in guiding end-oflife care, including the distinctions between withholding and withdrawing treatments, between actions of killing and allowing to die, and between consequences that are intended vs. those that are merely foreseen (the doctrine of double effect). Improved communication with the family has been shown to improve patient care and family outcomes. Other knowledge unique to endof-life care includes principles for notifying families of a patient’s death and compassionate approaches to discussing options for organ donation. End-of-life care continues even after the death of the patient, and ICUs should consider developing comprehensive bereavement programs to support both families and the needs of the clinical staff. Finally, a comprehensive agenda for improving end-of-life care in the ICU has been developed to guide research, quality improvement efforts, and educational curricula. Conclusions: End-of-life care is emerging as a comprehensive area of expertise in the ICU and demands the same high level of knowledge and competence as all other areas of ICU practice. (Crit Care Med 2008; 36:953‐963)

Evidence for Improving Palliative Care at the End of Life: A Systematic Review

Abstract: This systematic evidence review supports the American College of Physicians guideline on palliative care at the end of life. Strong to moderate evidence supports use of various treatments for cance...

Barriers to palliative care for children: perceptions of pediatric health care providers.

Abstract: OBJECTIVE. The goal was to explore barriers to palliative care experienced by pediatric health care providers caring for seriously ill children. METHODS. This study explored pediatric provider perceptions of end-of-life care in an academic children9s hospital, with the goal of describing perceived barriers to end-of-life care for children and their families. The report focuses on the responses of nurses (n = 117) and physicians (n = 81). RESULTS. Approximately one half of the respondents reported 4 of 26 barriers listed in the study questionnaire as frequently or almost always occurring, that is, uncertain prognosis (55%), family not ready to acknowledge incurable condition (51%), language barriers (47%), and time constraints (47%). Approximately one third of respondents cited another 8 barriers frequently arising from problems with communication and from insufficient education in pain and palliative care. Fourteen barriers were perceived by >75% of staff members as occasionally or never interfering with pediatric end-of-life care. Comparisons between physicians and nurses and between ICU and non-ICU staff members revealed several significant differences between these groups. CONCLUSIONS. Perceived barriers to pediatric end-of-life care differed from those impeding adult end-of-life care. The most-commonly perceived factors that interfered with optimal pediatric end-of-life care involved uncertainties in prognosis and discrepancies in treatment goals between staff members and family members, followed by barriers to communication. Improved staff education in communication skills and palliative care for children may help overcome some of these obstacles, but pediatric providers must realize that uncertainty may be unavoidable and inherent in the care of seriously ill children. An uncertain prognosis should be a signal to initiate, rather than to delay, palliative care.

What Explains Racial Differences in the Use of Advance Directives and Attitudes Toward Hospice Care

Abstract: Cultural beliefs and values are thought to account for differences between African Americans and whites in the use of advance directives and beliefs about hospice care, but few data clarify which beliefs and values explain these differences. Two hundred five adults aged 65 and older who received primary care in the Duke University Health System were surveyed. The survey included five scales: Hospice Beliefs and Attitudes, Preferences for Care, Spirituality, Healthcare System Distrust, and Beliefs About Dying and Advance Care Planning. African Americans were less likely than white subjects to have completed an advance directive (35.5% vs 67.4%, P<.001) and had less favorable beliefs about hospice care (Hospice Beliefs and Attitudes Scale score, P<.001). African Americans were more likely to express discomfort discussing death, want aggressive care at the end of life, have spiritual beliefs that conflict with the goals of palliative care, and distrust the healthcare system. In multivariate analyses, none of these factors alone completely explained racial differences in possession of an advance directive or beliefs about hospice care, but when all of these factors were combined, race was no longer a significant predictor of either of the two outcomes. These findings suggest that ethnicity is a marker of common cultural beliefs and values that, in combination, influence decision-making at the end of life. This study has implications for the design of healthcare delivery models and programs that provide culturally sensitive end-of-life care to a growing population of ethnically diverse older adults.

Evidence-Based Interventions to Improve the Palliative Care of Pain, Dyspnea, and Depression at the End of Life: A Clinical Practice Guideline from the American College of Physicians

Abstract: Recommendation 1: In patients with serious illness at the end of life, clinicians should regularly assess patients for pain, dyspnea, and depression. (Grade: strong recommendation, moderate quality of evidence.) Recommendation 2: In patients with serious illness at the end of life, clinicians should use therapies of proven effectiveness to manage pain. For patients with cancer, this includes nonsteroidal antiinflammatory drugs, opioids, and bisphosphonates. (Grade: strong recommendation, moderate quality of evidence.) Recommendation 3: In patients with serious illness at the end of life, clinicians should use therapies of proven effectiveness to manage dyspnea, which include opioids in patients with unrelieved dyspnea and oxygen for short-term relief of hypoxemia. (Grade: strong recommendation, moderate quality of evidence.) Recommendation 4: In patients with serious illness at the end of life, clinicians should use therapies of proven effectiveness to manage depression. For patients with cancer, this includes tricyclic antidepressants, selective serotonin reuptake inhibitors, or psychosocial intervention. (Grade: strong recommendation, moderate quality of evidence.) Recommendation 5: Clinicians should ensure that advance care planning, including completion of advance directives, occurs for all patients with serious illness. (Grade: strong recommendation, low quality of evidence.)

Easing of suffering in children with cancer at the end of life: is care changing?

Abstract: Purpose In the past decade studies have documented substantial suffering among children dying of cancer, prompting national attention on the quality of end-of-life care and the development of a palliative care service in our institutions. We sought to determine whether national and local efforts have led to changes in patterns of care, advanced care planning, and symptom control among children with cancer at the end of life. Methods Retrospective cohort study from a US tertiary level pediatric institution. Parent survey and chart review data from 119 children who died between 1997 and 2004 (follow-up cohort) were compared with 102 children who died between 1990 and 1997 (baseline cohort). Results In the follow-up cohort, hospice discussions occurred more often (76% v 54%; adjusted risk difference [RD], 22%; P < .001) and earlier (adjusted geometric mean 52 days v 28 days before death; P = .002) compared with the baseline cohort. Do-not-resuscitate orders were also documented earlier (18 v 12 days; P = .03...

Do palliative consultations improve patient outcomes

Abstract: OBJECTIVES: To determine whether inpatient palliative consultation services improve outcomes of care. DESIGN: Retrospective telephone surveys conducted with family members of veterans who received inpatient or outpatient care from a Department of Veterans Affairs (VA) medical facility in the last month of life. SETTING: Five VA Medical Centers or their affiliated nursing homes and outpatient clinics. PARTICIPANTS: Veterans had received inpatient or outpatient care from a participating VA in the last month of life. One family member completed each survey. MEASUREMENTS: The telephone survey assessed nine aspects of the care the patient received in his or her last month of life: the patient's well-being and dignity (4 items), adequacy of communication (5 items), respect for treatment preferences (2 items), emotional and spiritual support (3 items), management of symptoms (4 items), access to the inpatient facility of choice (1 item), care around the time of death (6 items), access to home care services (4 items), and access to benefits and services after the patient's death (3 items). RESULTS: Interviews were completed with 524 respondents. In a multivariable linear regression model, after adjusting for the likelihood of receiving a palliative consultation (propensity score), palliative care patients had higher overall scores: 65 (95% confidence interval (CI)=62–66) versus 54 (95% CI=51–56; P<.001) and higher scores for almost all domains. Earlier consultations were independently associated with better overall scores (β=0.003; P=.006), a difference that was attributable primarily to improvements in communication and emotional support. CONCLUSION: Palliative consultations improve outcomes of care, and earlier consultations may confer additional benefit.

Health literacy not race predicts end-of-life care preferences.

Abstract: Background: Several studies have reported that African Americans are more likely than whites to prefer aggressive treatments at the end of life. Objective: Since the medical information presented to subjects is frequently complex, we hypothesized that apparent differences in end-of-life preferences and decision making may be due to disparities in health literacy. A video of a patient with advanced dementia may overcome communication barriers associated with low health literacy. Design: Before and after oral survey. Participants: Subjects presenting to their primary care doctors. Methods: Subjects were asked their preferences for end-of-life care after they heard a verbal description of advanced dementia. Subjects then viewed a 2-minute video of a patient with advanced dementia and were asked again about their preferences. For the analysis, preferences were dichotomized into comfort care and aggressive care. Health literacy was measured using the Rapid Estimate of Adult Literacy in Medicine (REALM...

Improving generalist end of life care: national consultation with practitioners, commissioners, academics, and service user groups

Abstract: Objective To identify major concerns of national and local importance in the provision, commissioning, research, and use of generalist end of life care. Design A national consultation and prioritising exercise using a modified form of the nominal group technique. Participants Healthcare practitioners, commissioners, academics, and representatives of user and voluntary groups. Setting Primary and secondary care, specialist palliative care, and academic and voluntary sectors in England and Scotland. Results 74% of those invited (210/285) participated. The stage of life to which “end of life care” referred was not understood in a uniform way. Perceptions ranged from a period of more than a year to the last few days of life. Prominent concerns included difficulties in prognosis and the availability of adequate support for patients with advanced non-malignant disease. Generalists in both primary and secondary care were usually caring for only a few patients approaching the end of life at any one time at a point in time. It was therefore challenging to maintain skills and expertise particularly as educational opportunities were often limited. End of life care took place among many other competing and incentivised activities for general practitioners in the community. More needs to be known about models of end of life care and how these can be integrated in a generalist’s workload. A greater evidence base is needed about the effectiveness and application of current tools such as the gold standards framework and Liverpool care pathway and about models of palliation in patients with diseases other than cancer. Conclusions Definitions of end of life care need clarification and standardisation. A greater evidence base is needed to define models of good practice together with a commitment to provide education and training and adequate resources for service provision. More needs to be known about the context of provision and the influence of competing priorities and incentives.

Integrating Palliative and Critical Care: Evaluation of a Quality-Improvement Intervention

Abstract: Rationale: Palliative care in the intensive care unit (ICU) is an important focus for quality improvement. Objectives: To evaluate the effectiveness of a multi-faceted quality improvement intervention to improve palliative care in the ICU. Methods: We performed a single-hospital, before–after study of a quality-improvement intervention to improve palliative care in the ICU. The intervention consisted of clinician education, local champions, academic detailing, feedback to clinicians, and system support. Consecutive patients who died in the ICU were identified pre- (n = 253) and postintervention (n = 337). Families completed Family Satisfaction in the Intensive Care Unit (FS-ICU) and Quality of Dying and Death (QODD) surveys. Nurses completed the QODD. The QODD and FS-ICU were scored from 0 to 100. We used Mann-Whitney tests to assess family results and hierarchical linear modeling for nurse results. Measurements and Main Results: There were 590 patients who died in the ICU or within 24 hours of transfer; 496 had an identified family member. The response rate for family members was 55% (275 of 496) and for nurses, 89% (523/590). The primary outcome, the family QODD, showed a trend toward improvement (pre, 62.3; post, 67.1), but was not statistically significant (P = 0.09). Family satisfaction increased but not significantly. The nurse QODD showed significant improvement (pre, 63.1; post, 67.1; P < 0.01) and there was a significant reduction in ICU days before death (pre, 7.2; post, 5.8; P < 0.01). Conclusions: We found no significant improvement in family-assessed quality of dying or in family satisfaction with care, we found but significant improvement in nurse-assessed quality of dying and reduction in ICU length of stay with an intervention to integrate palliative care in the ICU. Improving family ratings may require interventions that have more direct contact with family members.

Changing the culture around end-of-life care in the trauma intensive care unit

Abstract: Background: Ten percent to 20% of trauma patients admitted to the intensive care unit (ICU) will die from their injuries. Providing appropriate end-of-life care in this setting is difficult and often late in the patients' course. Patients are young, prognosis uncertain, and conflict common around goals of care. We hypothesized that early, structured communication in the trauma ICU would improve end-of-life care practice. Methods: Prospective, observational, prepost study on consecutive trauma patients admitted to the ICU before and after a structured palliative care intervention was integrated into standard ICU care. The program included part I, early (at admission) family bereavement support, assessment of prognosis, and patient preferences, and part II (within 72 hours) interdisciplinary family meeting. Data on goals of care discussions, do-not-resuscitate (DNR) orders and withdrawal of life support (W/D) were collected from physician rounds, family meetings, and medical records. Results: Eighty-three percent of patients received part I and 69% part II intervention. Discussion of goals of care by physicians on rounds increased from 4% to 36% of patient-days. During intervention, rates of mortality (14%), DNR (43%), and W/D (24%) were unchanged, but DNR orders and W/D were instituted earlier in hospital course. ICU length of stay was decreased in patients who died. Conclusions: Structured communication between physician and families resulted in earlier consensus around goals of care for dying trauma patients. Integration of early palliative care alongside aggressive trauma care can be accomplished without change in mortality and has the ability to change the culture of care in the trauma ICU.

A systematic review of satisfaction with care at the end of life.

Abstract: The objective of this study was to systematically review the literature to better understand the conceptualization of satisfaction with end-of-life care and the effectiveness of palliative care interventions on this outcome. Data sources included Medline and the Database of Reviews of Effects. The review included relevant qualitative studies and intervention studies using satisfaction as an outcome from 1990 to 2005. Reviewing 24,423 citations yielded 21 relevant qualitative studies, four systematic reviews, and eight additional intervention studies. The qualitative literature described the domains of accessibility and coordination; competence, including symptom management; communication and education; emotional support and personalization of care; and support of patients' decision-making. For collaboration and consultation interventions, eight of 13 studies showed a significant effect on satisfaction. A meta-analysis found that palliative care and hospice teams improved satisfaction, although most studies did not include satisfaction as an outcome. For other types of interventions, only two of six showed a significant effect. For heart failure coordination of care, only seven of 32 studies addressed this as an outcome; two of the three that compared satisfaction between groups showed a significant difference. Evaluations used many different measures, only one of which was designed for the end of life. In conclusion, researchers have conceptualized satisfaction in palliative care, and different types of palliative care interventions can improve satisfaction, but it is often not included as an outcome. More focus on these satisfaction elements might improve the effectiveness of end-of-life interventions and their evaluation.

End of Life Care Strategy

Abstract: Promoting high quality care for all adults at the end of life 'How people die remains in the memory of those who live on' Promoting high quality care for all adults at the end of life 'How people die remains in the memory of those who live on' Document Gateway reference 9840 title End of Life Care Strategy – promoting high quality care for all adults at the end of life Description The End of Life Care Strategy aims to improve the provision of care for all adults at the end of life, and their families and carers. The text of this document may be reproduced without formal permission or charge for personal or in-house use.

The quality of dying and death.

Abstract: During the past decade, research has examined definitions and conceptualizations of quality of dying and death in different populations. At the same time, there has been a call to clarify the distinctions between quality of dying and death and other end-of-life constructs. The purposes of this article are to (1) review research that examined definitions and conceptualizations of the quality of dying and death, (2) clarify the quality of dying and death construct and its distinction from quality of life and quality of care at the end of life, and (3) outline challenges that remain for health care professionals, researchers, and policy makers. Review of the literature revealed that the quality of dying and death construct is multidimensional, with 7 broad domains: physical experience, psychological experience, social experience, spiritual or existential experience, the nature of health care, life closure and death preparation, and the circumstances of death. The quality of dying and death is subjectively determined with numerous factors that influence its judgment, including culture, type and stage of disease, and social and professional role in the dying experience. Quality of dying and death is broader in scope than either quality of life at the end of life or quality of care at the end of life, although there is overlap among these constructs.

The effect of the Liverpool Care Pathway for the dying: a multi-centre study

Abstract: We studied the effect of the Liverpool Care Pathway (LCP) on the documentation of care, symptom burden and communication in three health care settings. Between November 2003 and February 2005 (baseline period), the care was provided as usual. Between February 2005 and February 2006 (intervention period), the LCP was used for all patients for whom the dying phase had started. After death of the patient, a nurse and a relative filled in a questionnaire. In the baseline period, 219 nurses and 130 relatives filled in a questionnaire for 220 deceased patients. In the intervention period, 253 nurses and 139 relatives filled in a questionnaire for 255 deceased patients. The LCP was used for 197 of them. In the intervention period, the documentation of care was significantly more comprehensive compared with the baseline period, whereas the average total symptom burden was significantly lower in the intervention period. LCP use contributes to the quality of documentation and symptom control.

Availability and Use of Palliative Care and End-of-Life Services for Pediatric Oncology Patients

Abstract: Purpose Palliative care prevents or relieves the symptoms caused by life-threatening medical conditions. Previous surveys have shown both underuse and lack of availability of these services for children with cancer throughout North America. We sought to investigate the current practices and resources surrounding palliative and end-of-life care among participating institutions of the Children's Oncology Group (COG). Methods A survey regarding practices and resources was developed by the COG palliative care subcommittee and was sent to all 232 institutions to complete for the calendar year 2005. Results The survey was completed by 81% of the institutions. Per institution, there were a mean of 64.6 newly diagnosed patients and 17.7 patients experiencing relapse. A palliative care team was available in 58% of institutions, a pain service in 90%, a hospice in 60%, a psychosocial support team in 80%, and a bereavement program in 59%. Complementary and alternative medicine was available in 39% of institutions an...

A qualitative study of oncologists' approaches to end-of-life care.

Abstract: Purpose: To understand how oncologists provide care at the end of life, the emotions they experience in the provision of this care, and how caring for dying patients may impact job satisfa...

Unrecognized contributions of families in the intensive care unit

Abstract: To describe the contributions to care that family members perform while their loved one is at high risk of dying in the intensive care unit. Exploratory, descriptive analysis. Two intensive care units at a tertiary medical center in the western United States. Through purposive sampling, 25 family members of 24 ICU patients at high risk of dying participated in the study. None. A qualitative, descriptive technique was used for data analysis. Three independent raters coded transcripts of audiotaped interviews with family members about their experiences in the ICU. Recurring themes were categorized into roles that family members take on while their loved one is in the ICU. These work roles consisted of active presence, patient protector, facilitator, historian, coach, and voluntary caregiver. Family members are important to patient care in the ICU. They perform multiple roles that are often not valued or go unrecognized by ICU health care providers. More support and appreciation of family members' contributions to care may provide families opportunities for intimacy and promote a sense of belonging in the highly technical environment of an ICU.

Peace, Equanimity, and Acceptance in the Cancer Experience (PEACE): validation of a scale to assess acceptance and struggle with terminal illness.

Abstract: BACKGROUND. The role of emotional acceptance of a terminal illness in end-of-life (EOL) care is not known. The authors developed a measure of peaceful acceptance at the EOL, and evaluated the role of peaceful acceptance in EOL decision-making and care. METHODS. The authors developed the Peace, Equanimity, and Acceptance in the Cancer Experience (PEACE) questionnaire to measure the extent to which patients with advanced cancer have a sense of peaceful acceptance of their terminal illness. The scale was administered to 160 patients with advanced cancer along with measures of other attributes that hypothetically are related to acceptance, including cognitive acceptance of terminal illness. EOL outcomes in 56 patients who died during the study also were examined. RESULTS. The 12-item PEACE questionnaire had 2 subscales: a 7-item Struggle With Illness subscale (Cronbach α = .81) and a 5-item Peaceful Acceptance subscale (α = .78). Both subscales were associated with patients' self-reported peacefulness (correlation coefficient [r] = 0.66 for acceptance [P <.0001]; r = −0.37 for struggle [P < .0001]). Struggle With Illness scores were associated with cognitive terminal illness acknowledgment (mean scores, 14.9 vs 12.4 for patients who were not aware that their illness was terminal; P = .001) and with some aspects of advance care planning (living will or healthcare proxy: mean scores, 13.9 vs 11.5; P = .02). In addition, among patients who had died, the use of a feeding tube at the EOL was associated inversely with Peaceful Acceptance (P = .015). CONCLUSIONS. The current study indicated that the PEACE questionnaire is a valid and reliable measure of peaceful acceptance and struggle with illness. Scores were associated with some choices for EOL care among patients with advanced cancer. Cancer 2008. © 2008 American Cancer Society.

An exploratory study of spiritual care at the end of life.

Abstract: PURPOSE Although spiritual care is a core element of palliative care, it remains unclear how this care is perceived and delivered at the end of life. We explored how clinicians and other health care workers understand and view spiritual care provided to dying patients and their family members. METHODS Our study was based on qualitative research using key informant interviews and editing analysis with 12 clinicians and other health care workers nominated as spiritual caregivers by dying patients and their family members. RESULTS Being present was a predominant theme, marked by physical proximity and intentionality, or the deliberate ideation and purposeful action of providing care that went beyond medical treatment. Opening eyes was the process by which caregivers became aware of their patient’s life course and the individualized experience of their patient’s current illness. Participants also described another course of action, which we termed cocreating, that was a mutual and fluid activity between patients, family members, and caregivers. Cocreating began with an affirmation of the patient’s life experience and led to the generation of a wholistic care plan that focused on maintaining the patient’s humanity and dignity. Time was both a facilitator and inhibitor of effective spiritual care. CONCLUSIONS Clinicians and other health care workers consider spiritual care at the end of life as a series of highly fluid interpersonal processes in the context of mutually recognized human values and experiences, rather than a set of prescribed and proscribed roles.

Using the Medical Record to Evaluate the Quality of End-of-Life Care in the Intensive Care Unit

Abstract: Rationale:We investigated whether proposed “quality markers” within the medical record are associated with family assessment of the quality of dying and death in the intensive care unit (ICU).Objective:To identify chart-based markers that could be used as measures for improving the quality of end-of

Duration of Withdrawal of Life Support in the Intensive Care Unit and Association with Family Satisfaction

Abstract: Rationale: Most deaths in the intensive care unit (ICU) involve withholding or withdrawing multiple life-sustaining therapies, but little is known about how to proceed practically and how this process affects family satisfaction. Objectives: Toexaminethedurationoflife-support withdrawalandits association with overall family satisfaction with care in the ICU. Methods: We studied family members of 584 patients who died in an ICU at1 of14hospitals after withdrawaloflife supportand for whom complete medical chart and family questionnaires were available. Measurements and Main Results: Data concerning six life-sustaining interventionsadministeredduringthelast5daysoflifewerecollected. Families were asked to rate their satisfaction with care using the Family SatisfactionintheICUquestionnaire.Fornearlyhalfofthepatients(271/ 584), withdrawal of all life-sustaining interventions took more than 1 day. Patients with a prolonged (.1 d) life-support withdrawal were younger, stayed longer in the ICU, had more life-sustaining interventions,hadlessoftenadiagnosisofcancer,andhadmoredecisionmakers involved. Among patients with longer ICU stays, a longer duration in life-support withdrawal was associated with an increase in family satisfaction with care (P 5 0.037). Extubation before death was associated with higher family satisfaction with care (P 50.009). Conclusions: Withdrawal of life support is a complex process that depends on patient and family characteristics. Stuttering withdrawal is a frequent phenomenon that seems to be associated with family

Using the experiences of bereaved caregivers to inform patient- and caregiver-centered advance care planning.

Abstract: Background Traditional approaches to advance care planning (ACP) have many limitations; new approaches are being developed with the goal of improving end-of-life care.

A population-based study of age inequalities in access to palliative care among cancer patients

Abstract: Background:Inequalities in access to palliative care programs (PCP) by age have been shown to exist in Canada and elsewhere. Few studies have been able to provide greater insight by simultaneously adjusting for multiple demographic, health service, and socio-cultural indicators.Objective:To re-exami

How does the environment impact on the quality of life of advanced cancer patients? A qualitative study with implications for ward design.

Abstract: It is well recognized that the ward environment has an effect on patients’ quality of life and may, therefore, impact on the quality of end of life care. The body of evidence that informs ward design policy recommends single-bedded rooms on grounds of reduced infection risk, noise and versatility. Considering the majority of anticipated patient deaths occurring in hospitals, the quality of life aspects of ward design should also be considered. The aim of this study is to explore the views of patients with advanced cancer on the effect the ward environment has on their overall well-being. Semistructured interviews exploring the experiences of 12 inpatients at a regional cancer centre were recorded and transcribed verbatim. Transcripts were analysed for emerging themes until theoretical saturation. Four major themes emerged: staff behaviours, the immediate environment, single vs. multi-bedded rooms and contact with the outside environment. The attitude, competence and helpfulness of the staff creates the atmosphere of the ward regardless of layout, furnishings, equipment and decor. The majority of the patients in this study expressed a strong preference for a multi-bedded room when they were well enough to interact and a single cubicle when they were very ill or dying, which opposes the current advice for building new hospitals with all single rooms. Although the current policy recommends the use of single-bedded rooms, this study suggests the need for a mix of multi-bedded wards and single rooms with respect to the impact of the environment on patient quality of life.

Pediatric residents' clinical and educational experiences with end-of-life care

Abstract: OBJECTIVE. The objective of this study was to document the frequency of pediatric resident experiences with end-of-life care for children and the educational context for these experiences, as well as to determine whether residents deem their preparatory training adequate. METHODS. An Internet-based survey was distributed to all categorical pediatric residents at the Johns Hopkins Children9s Center. Survey items asked residents to (1) quantify their experiences with specific responsibilities associated with the death of a pediatric patient, (2) identify their educational experiences, and (3) respond to Likert scale statements of, “I feel adequately trained to… .” The responsibilities were discussion of withdrawal/limitation of life-sustaining therapy, symptom management, declaration of death, discussion of autopsy, completion of a death certificate, seeking self-support, and follow-up with families. RESULTS. Forty (50%) of 80 residents completed the survey. Residents had been present for a mean (± SD) of 4.7 (± 3.0) patient deaths. More than 50% of residents had participated in discussions of withdrawal/limitation of life-sustaining therapy, symptom management, completing a death certificate, and seeking personal support; however, CONCLUSION. Pediatric residents have limited experience with pediatric end-of-life care and highly varied educational experiences and do not feel adequately trained to fulfill the responsibilities associated with providing end-of-life care for children. Overall, this perception does not improve with increased level of training. This study identifies several target areas for curricular intervention that may ultimately improve the end-of-life experience for our pediatric patients and their families and the young physicians who care for them.