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

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.     

The development of a palliative care program for managed care patients: a case example

Palliative care is emerging as an important new field. Although programs are developing in hospital environments, little is known about development of programs in outpatient practices or those serving large managed care populations. This article provides a framework for the development of a comprehensive palliative care program in a large multispecialty group practice that serves managed care patients. The article addresses guiding principles, the need for obtaining baseline data, how the clinical consultation service was established, development of outcomes measures, and information on current program status. Five themes emerged as key to successful program development, most importantly the close collaboration between administrative and clinical staff in all aspects of program development.     

Quality of end-of-life care of home-based care with or without palliative services for patients with advanced illnesses

Palliative care has improved quality of end-of-life (EOL) care for patients with cancer, and these benefits may be extended to patients with other serious illnesses. EOL care quality for patients with home-based care is a critical problem for health care providers. We compare EOL quality care between patients with advanced illnesses receiving home-based care with and without palliative services.The medical records of deceased patients who received home-based care at a community teaching hospital in south Taiwan from January to December 2019 were collected retrospectively. We analyzed EOL care quality indicators during the last month of life.A total of 164 patients were included for analysis. Fifty-two (31.7%) received palliative services (HP group), and 112 (68.3%) did not receive palliative services (non-HP group). Regarding the quality indicators of EOL care, we discovered that a lower percentage of the HP group died in a hospital than did that of the non-HP group (34.6% vs 62.5%, P = .001) through univariate analysis. We found that the HP group had lower scores on the aggressiveness of EOL care than did the non-HP group (0.5 ± 0.9 vs 1.0 ± 1.0, P<.001). Furthermore, palliative services were a significant and negative factor of dying in a hospital after adjustment (OR = 0.13, 95%CI = 0.05–0.36, P < .001).For patients with advanced illnesses receiving home-based care, palliative services are associated with lower scores on the aggressiveness of EOL care and a reduced probability of dying in a hospital.     

A randomized clinical trial of adolescents with HIV/AIDS: pediatric advance care planning

The objective of this study is to determine if pediatric advance care planning (pACP) increases adolescent/family congruence in end-of-life (EOL) treatment preferences longitudinally. Adolescents aged 14–21 years with HIV/AIDS and their families were randomized (N?=?105 dyads) to three-60-minute sessions scheduled one week apart: either the pACP intervention (survey administered independently, facilitated conversation with adolescent and family present, completion of legal advance directive document with adolescent and family present) or an active control (developmental history, safety tips, nutrition and exercise education). This longitudinal, single-blinded, multi-site, randomized controlled trial was conducted in six pediatric hospital-based HIV-clinics, located in high HIV mortality cities. The Statement of Treatment Preferences measured adolescent/family congruence in EOL treatment preferences at immediately following the facilitated pACP conversation (Session 2), and at 3-month post-intervention. The mean age of adolescent participants was 18 years (range 14–21 years); 54% were male; and 93% were African-American. One-third had an AIDS diagnosis. Immediately post-intervention the Prevalence Adjusted Bias Adjusted Kappa showed substantial treatment preference agreement for pACP dyads compared to controls (High burden/low chance of survival, PABAK?=?0.688 vs. 0.335; Functional impairment, PABAK?=?0.687 vs. PABAK=?0.34; Mental impairment, PABKA?=?0.717 vs. 0.341). Agreement to limit treatments was greater among intervention dyads than controls (High burden: 14.6% vs. 0%; Functional impairment?=?22.9% vs. 4.4%; and Mental impairment: 12.5% vs. 4.4%). Overall treatment preference agreement among pACP dyads was high immediately post-intervention, but decreased over time. In contrast, treatment agreement among control dyads was low and remained low over time. As goals of care change over time with real experiences, additional pACP conversations are needed.     

Non-medical palliative care and education to improve end-of-life care at geriatric health services facilities: A nationwide questionnaire survey of chief nurses

Background:   Geriatric health services facilities (GHSF) are expected to assume a growing role in caring for the dying elderly. However, research in this area has so far been scant. The purpose of the present study is to reveal the status of non-medical palliative care and staff education aiming at improving and enhancing end-of-life care at GHSF.
Methods:   The subjects were 2876 chief nurses of GHSF. Data was collected through a mailed questionnaire in 2003. The questionnaire covered the following: (i) staff perception of end-of-life care policies; (ii) staff education; and (iii) available non-medical care. To evaluate the factors correlated with end-of-life care policies at GHSF, we divided the facilities into two groups.
Results:   We analyzed the answers collected from 313 facilities with a progressive policy toward end-of-life care (PP group) and 818 with a regressive policy toward it (RP group). It was found that staff training was conducted more frequently among PP facilities. Generally, nurses in the PP facilities were more confident that they could provide comprehensive on-site end-of-life care and grieving support, but did not feel so sure about their ability to provide better end-of-life environments for dying residents and family by organizing outside support from voluntary and/or governmental organizations and religious organization for healing and to pursue appropriately a written follow-up communication with the bereaved family.
Conclusions:   Our results suggest that providing GHSF staff with education about end-of-life issues or setting up collaboration with the outside is an important factor to enhance overall end-of-life care at these facilities.     

Continuity of care and other determinants of patient satisfaction with primary care

OBJECTIVE: The patient-clinician relationship is a central feature of primary care, and recent developments in the delivery of health care have tended to limit continuity of care. The objective of this study was to evaluate the extent to which continuity of care and other factors are related to patient satisfaction. DESIGN: Cross-sectional, mailed questionnaire study. SETTING: Primary care clinics at 7 Veterans Affairs medical centers. PATIENTS/PARTICIPANTS: Patients (N=21,689) participating in the Ambulatory Care Quality Improvement Project who returned the baseline Seattle Outpatient Satisfaction Questionnaire (SOSQ). MEASUREMENTS AND MAIN RESULTS: We evaluated the association between self-reported continuity and satisfaction, after adjusting for characteristics of patients, clinics, and providers. The humanistic scale of the SOSQ measures patient satisfaction with communication skills and humanistic qualities of providers, whereas the organizational scale measures satisfaction with delivery of health care services. The mean adjusted humanistic score for patients who reported always seeing the same provider was 17.3 (95% confidence interval [CI], 15.5 to 19.1) points higher than for those who rarely saw the same provider. Similarly, the mean adjusted organizational score was 16.3 (95% CI, 14.5 to 18.1) points higher for patients who always saw the same provider compared to rarely. Demographic factors, socioeconomic status, health status, clinic site, and patient utilization of services were all associated with both the adjusted humanistic and organizational scores of the SOSQ. CONCLUSIONS: Self-reported continuity of care is strongly associated with higher patient satisfaction. This suggests that improving continuity of care may improve patient satisfaction with providers as well as with their health care organization.     

Primary care for patients infected with human immunodeficiency virus: a randomized controlled trial

OBJECTIVE: To measure the impact of a teaching intervention and to compare process and outcomes of care for HIV-infected patients randomly assigned to a general medicine clinic (GMC) or an infectious disease clinic (IDC) for primary care. DESIGN: Prospective, randomized, controlled trial. SETTING: University hospital in Durham, NC. PATIENTS: Two hundred fourteen consecutive HIV-infected patients presenting for primary care. INTERVENTION: Physicians at the GMC received HIV-related training and evidence-based practice guidelines. MEASUREMENTS: Utilization of services, health-related quality of life, preventive and screening measures, and antiretroviral use for one year. RESULTS: At baseline GMC patients were more likely to be African American (85% vs 71%; P =.03) and had lower baseline CD4+ cell counts than IDC patients (262 +/- 269 vs 329 +/- 275; P =.05). A similar and high proportion of patients in both groups received appropriate preventive care services including Pneumocystis carinii pneumonia (PCP) prophylaxis, pneumococcal vaccination, and antiretroviral therapy. Screening for TB was more frequent in GMC (89% vs 68%; P =.001). In the year following randomization, GMC patients made more visits to the emergency department than IDC patients (1.6 +/- 3.0 vs 0.7 +/- 1.5; P =.05). Hospital use was higher for GMC patients with average length of stay 7.8 +/- 6.3 days compared to 5.7 +/- 3.8 days for IDC patients (P =.01). In analyses, which adjust for potential baseline imbalances, these differences remained. CONCLUSIONS: Targeted education in GMC achieved similar provision of primary care for GMC patients, yet use of health care services was higher for this group. The delivery of adequate primary care is necessary but not sufficient to produce changes in health care utilization.     

There is hope for the future: national survey results reveal that geriatric medicine fellows are well-educated in end-of-life care

OBJECTIVES: To assess the status of geriatric medicine (GM) fellows' training experiences in end-of-life care via self-report. DESIGN: Anonymous surveys completed by mail, Web access, and telephone. SETTING: U.S. accredited GM fellowship training programs. PARTICIPANTS: Two hundred ninety-six surveys were sent to graduating GM fellows in 1- and 2-year programs across the Unites States. MEASUREMENTS: Measurements assessed self-reported attitudes, quantity and quality of end-of-life care education, preparation to provide care, and perceived value of caring for dying patients. RESULTS: Response rate was 74%. Ninety-five percent or more of respondents held positive views about physicians' responsibility and ability to help dying patients. Seventy percent of fellows had completed a rotation focused on end-of-life care. Fellows who had done such rotations rated their end-of-life care education as highly as their overall geriatrics training. Fellows frequently received teaching in many end-of-life care topics, with lower rates of teaching how to say goodbye and responding to requests for assisted suicide. Overall, fellows felt well prepared to care for dying patients. Four factors independently predicted such preparedness: having had a palliative or end-of-life care rotation, being female, having been taught how to say goodbye to patients, and perceiving that it is important to attending physicians that fellows learn to care for dying patients. CONCLUSION: GM fellows feel their end-of-life care education is excellent and feel prepared to take care of dying patients. It is critical that geriatricians in training have access to and take advantage of palliative and end-of-life care rotations.     

Our dementia challenge: arise palliative care

While many of the maladies of the 20th century are steadily coming under control, the march of neurodegenerative disorders continues largely unchecked. Dementias are an exemplar of such disorders; their incidence and prevalence continue to rise, in large part due to a steadily ageing population worldwide. They represent a group of chronic, progressive and, ultimately, fatal neurodegenerative diseases. Dementia has remained therapeutically recalcitrant. It is not a single disease, and because of that, we cannot expect a single panacea. While primary prevention rightly gains prominence, those with established disease currently require a shift in focus from curative intent towards improved quality of life. Enter palliative care. The sheer number and complexity of needs of patients with dementia, from the physical to the psychosocial and spiritual, necessitates the engagement of a wide range of medical disciplines, nursing and allied health professionals. One of those disciplines, as highlighted in the recent Australian Royal Commission into Aged Care Quality and Safety, is palliative care. This paper shall expand upon that role in the overall context of care for those with dementia.     

Rapid death after admission to palliative care

Background: Palliative care units provide non‐curative treatment and support to patients with terminal illness. Brief end‐of‐life admissions are disruptive for patients and their families, and increase staff stress. Extremely rapid deaths (survival <24 h from admission) are particularly challenging for all involved. From 1 January 2010 to 23 August 2011, 256 patients died on the Palliative Care Unit (Caritas Christi) at St Vincent's Hospital Melbourne. Forty‐two died within 24 h (16%), while 214 survived beyond 24 h (84%). Aims: A retrospective chart audit was conducted, aiming to identify factors characterising those patients who died within 24 h. Methods: Groups were compared for age, gender, country of birth, preferred language, ward of origin, primary pathology, time trends, whether an emergency code was called, Palliative Care Outcomes Collaboration (PCOC) phase, modified Karnofsky score and commencement of a syringe driver for medication. Results: Results showed that admission from neurosurgery (P= 0.0001), a vascular or infective pathology (P= 0.0001), PCOC phase ≥3 (P= 0.0001), modified Karnofsky score ≤20% (P= 0.0001), and commencement of a syringe driver prior to or at admission (P= 0.0001) were all significantly associated with death within 24 h of admission. On binary logistic regression, the only independent predictor of patients likely to die in <24 h from admission was PCOC phase ≥3 (P= 0.002). Conclusions: This study is designed to help clinicians identify patients likely to deteriorate rapidly. Alternative options could include earlier transfer to the palliative care unit or palliation on their home ward with palliative care consultation.     

Anger in palliative care: a clinical approach

Anger in patients and families is a common problem in the care of persons with advanced disease. Whereas it is widely accepted that anger may be a justifiable reaction to significant illness and loss, it frequently creates difficulties for the doctors involved in care. In particular, there is often a personal impact on the doctor at whom anger is directed. This paper examines results of qualitative research with palliative care workers in the context of the broader published literature and the authors' clinical experiences. The ability to interact effectively with angry patients is a skill that is often learned with experience and is extremely useful in both transforming the patients' reaction into a more creative emotion and in developing a therapeutic relationship. Despite conscientious efforts, however, a few patients continue to be angry. A practical approach to anger, useful for the clinician directly involved in care, is outlined along with some strategies to adopt in the face of persistent anger.     

Improving patient satisfaction with the transfer of care

OBJECTIVE: To determine whether educational sessions with medical residents, with or without letters to their patients, improve patient satisfaction with transfer of their care from a departing to a new resident in an internal medicine clinic. DESIGN: Observational study in Year 1 to establish a historical control, with a randomized intervention in Year 2. SETTING: An internal medicine clinic in a teaching hospital. PATIENTS/PARTICIPANTS: Patients of departing residents completed questionnaires in the waiting room at their first visit with a new resident, with mail-administered questionnaires for patients not presenting to the clinic within 3 months after transfer of their care. In Year 1, 376 patients completed questionnaires without intervention. The following spring, we conducted interactive seminars with 12 senior residents to improve their transfer of care skills (first intervention). Half of their patients were then randomized to receive a letter from the new doctor informing them of the change (second intervention). We assessed the efficacy of the interventions by administering questionnaires to 437 patients in the months following the interventions. MEASUREMENTS AND MAIN RESULTS: Multivariate analysis of Year 1 results identified doctors personally informing patients prior to leaving as the single strongest predictor of patient satisfaction (partial R2=.41). In Year 2, our first intervention increased the percentage of patients informed by their doctors from 71% in 1991 to 79% in 1992 (P <.001). Mean satisfaction dramatically improved, with the fraction of fully satisfied patients increasing from 47% at baseline, to 61% with the first intervention alone, and 72% with both interventions (P <.0001). CONCLUSIONS: Simple methods such as resident education and direct mailings to patients significantly ease the difficult process of transferring patients from one physician to another. This has implications not only for residency programs, but for managed care networks competing to attract and retain patients.     

The status of medical education in end-of-life care

OBJECTIVE: To assess the status of medical education in end-of-life care and identify opportunities for improvement. DESIGN: Telephone survey. SETTING: U.S. academic medical centers. PARTICIPANTS: National probability sample of 1,455 students, 296 residents, and 287 faculty (response rates 62%, 56%, and 41%, respectively) affiliated with a random sample of 62 accredited U.S. medical schools. MEASUREMENTS AND MAIN RESULTS: Measurements assessed attitudes, quantity and quality of education, preparation to provide or teach care, and perceived value of care for dying patients. Ninety percent or more of respondents held positive views about physicians' responsibility and ability to help dying patients. However, fewer than 18% of students and residents received formal end-of-life care education, 39% of students reported being unprepared to address patients' fears, and nearly half felt unprepared to manage their feelings about patients' deaths or help bereaved families. More than 40% of residents felt unprepared to teach end-of-life care. More than 40% of respondents reported that dying patients were not considered good teaching cases, and that meeting psychosocial needs of dying patients was not considered a core competency. Forty-nine percent of students had told patients about the existence of a life-threatening illness, but only half received feedback from residents or attendings; nearly all residents had talked with patients about wishes for end-of-life care, and 33% received no feedback. CONCLUSIONS: Students and residents in the United States feel unprepared to provide, and faculty and residents unprepared to teach, many key components of good care for the dying. Current educational practices and institutional culture in U.S. medical schools do not support adequate end-of-life care, and attention to both curricular and cultural change are needed to improve end-of-life care education.     

Factors determining client satisfaction with hospital-based perinatal care in Sri Lanka

OBJECTIVES: To describe mothers' satisfaction with perinatal care received during hospitalization for delivery, and to identify sociodemographic and health-care-related factors associated with satisfaction. METHOD: A cross-sectional study of 446 mother-newborn pairs from five hospitals in Puttalam district, Sri Lanka, was carried out by stratified randomization. Client satisfaction was measured using a 16-item survey instrument with high internal consistency (Cronbach's alpha=0.81), through exit interview. RESULTS: The proportion of mothers who were fully satisfied varied from 10.8% to 31.4% for interpersonal aspects, and from 10.1% to 28.9% for technical aspects of care. The satisfaction rates were lower with physical environment (6.1-10.1%) and higher with outcome of care (41.0-48.0%). Multivariate analyses indicated that mothers were more satisfied with the services available from lower level hospitals. Multiparae were more satisfied than primiparae. Determinants of satisfaction included providing immediate mother-newborn contact, information after examination and counselling on family planning. Higher satisfaction with the physical environment was associated with being Moor or Tamil as opposed to Sinhalese and with lower family income. CONCLUSIONS: The factors associated with client satisfaction identified in this study may be helpful in improving quality of care. Hospital staff should ensure that these are addressed and develop interpersonal relationships, especially with the first-time mothers and in higher level hospitals. Maternity units of lower level institutions should be upgraded with essential facilities.     

The intersection between geriatrics and palliative care: a call for a new research agenda

Palliative care is interdisciplinary treatment focused on the relief of suffering and achieving the best possible quality of life for patients and their caregivers. It differs for geriatric patients from what is usually appropriate in a younger population because of the nature and duration of chronic illness during old age. In spite of the fact that death occurs far more commonly in older people than in any age group, the evidence base for palliative care in older adults is sparse. Over the coming years, the research foci in the field of geriatrics and palliative care that must be addressed include establishing the prevalence of symptoms in patients with chronic disease; evaluating the association between treatment of symptoms and outcomes; increasing the evidence base for treatment of symptoms; understanding psychological well-being, spiritual well-being, and quality of life of patients and elucidating and alleviating sources of caregiver burden; reevaluating service delivery; adapting research methodologies specifically for geriatric palliative care; and increasing the number of geriatricians trained as investigators in palliative care research. This article discusses specific methods to improve the current situation within each of these seven areas.     

Effect of a biopsychosocial approach on patient satisfaction and patterns of care

BACKGROUND: There is a growing tendency to include in medical curricula teaching programs that promote a biopsychosocial (BPS) approach to patient care. However, we know of no attempts to assess their effect on patterns of care and health care expenditures. OBJECTIVE: To determine whether 1) a teaching intervention aiming to promote a BPS approach to care affects the duration of the doctor-patient encounter, health expenditures, and patient satisfaction with care, and 2) the teaching method employed affects these outcomes. METHODS: We compared two teaching methods. The first one (didactic) consisted of reading assignments, lectures, and group discussions. The second (interactive) consisted of reading assignments, small group discussions, Balint groups, and role-playing exercises. We videotaped patient encounters 1 month before and 6 months after the teaching interventions, and recorded the duration of the videotaped encounters and whether the doctor had prescribed medications, ordered tests, and referred the patient to consultants. Patient satisfaction was measured by a structured questionnaire. RESULTS: Both teaching interventions were followed by a reduction in medications prescribed and by improved patient satisfaction. Compared to the didactic group, the interactive group prescribed even fewer medications, ordered fewer laboratory examinations, and elicited higher scores of patient satisfaction. The average duration of the encounters after the didactic and interactive teaching interventions was longer than that before by 36 and 42 seconds, respectively. CONCLUSIONS: A BPS teaching intervention may reduce health care expenditures and enhance patients’ satisfaction, without changing markedly the duration of the encounter. An interactive method of instruction was more effective in achieving these objectives than a didactic one. Supported in part by the Chief Scientist’s Office of the Israeli Ministry of Health. This study was submitted in partial fulfillment of the requirements for the degree of PhD in medical education at Ben-Gurion University of the Negev, under the supervision of Dr. Shimon M. Glick and Dr. C.Z. Margolis, Ben-Gurion University of the Negev and Dr. Michael Katz, Haifa University.