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VA Greater Los Angeles, Los Angeles, California, USADavid Geffen School of Medicine at UCLA, Los Angeles, California, USARAND Corporation, Santa Monica, California, USA
Increasing interest in end-of-life care has resulted in many tools to measure the quality of care. An important outcome measure of end-of-life care is the family members' or caregivers' experiences of care.
Objectives
To evaluate the instruments currently in use to inform next steps for research and policy in this area.
Methods
We conducted a systematic review of PubMed, PsycINFO, and PsycTESTS® for all English-language articles published after 1990 using instruments to measure adult patient, family, or informal caregiver experiences with end-of-life care. Survey items were abstracted and categorized into content areas identified through an iterative method using three independent reviewers. We also abstracted information from the most frequently used surveys about the identification of proxy respondents for after-death surveys, the timing and method of survey administration, and the health care setting being assessed.
Results
We identified 88 articles containing 51 unique surveys with available content. We characterized 14 content areas variably present across the 51 surveys. Information and care planning, provider care, symptom management, and overall experience were the most frequent areas addressed. There was also considerable variation across the surveys in the identification of proxy respondents, the timing of survey administration, and in the health care settings and services being evaluated.
Conclusion
This review identified several comprehensive surveys aimed at measuring the experiences of end-of-life care, covering a variety of content areas and practical issues for survey administration. Future work should focus on standardizing surveys and administration methods so that experiences of care can be reliably measured and compared across care settings.
The 2010 Affordable Care Act's emphasis on health care quality through payment reform underscores the need to systematize approaches to assess performance and quality of care. This is particularly relevant to evaluating care at the end of life, a time period with considerable variation in health care utilization and quality
Use of hospitals, physician visits, and hospice care during last six months of life among cohorts loyal to highly respected hospitals in the United States.
and when health care systems are challenged to respond effectively to the intense needs of seriously ill persons. Evaluating the end-of-life care experience presents unique challenges, including the frail and impaired condition of most patients that may preclude their participation in the assessment process and compels a reliance on proxy (i.e., family member or informal caregiver) reporting,
In addition, end-of-life care encompasses a wide range of services important to patients and families, from symptom management to spiritual support to bereavement care,
and use of various settings is common, assessment approaches also must capture organizational diversity, be applicable across multiple settings, and pose questions that enable the respondent to differentiate between care received in different settings.
Despite these challenges, surveys of experience of end-of-life care have been developed and used for quality improvement and research purposes. A better understanding of existing evaluation approaches and surveys can help to identify gaps in measurement and inform future policy decisions regarding quality and performance improvement. To identify all available surveys that cover this important component of quality, we undertook a comprehensive literature review of existing publicly available surveys and measures of patient, family, or informal caregiver experience and satisfaction with care at the end of life. Our review characterizes the areas of care that are included in available surveys and describes how proxy respondents are identified, the timing and method of survey administration, and the type of health care setting being assessed.
Methods
Search Strategy
We systematically reviewed the published literature on patients', families', or informal caregivers' experiences with end-of-life care.
Higgins JPT, Green S, eds. Cochrane handbook for systematic reviews of interventions, v. 5.1.0 [updated March 2011]. The Cochrane Collaboration, 2011. Available at: www.cochrane-handbook.org.
We searched PubMed, PsycINFO, and PsycTESTS® for English-language articles published between January 1, 1990 and June 6, 2012. We further limited our search to studies of adults (aged older than 18 years) and used a combination of the following search terms to identify the various ways end-of-life care is conceptualized in the literature: “hospice” OR “palliative care” OR “end of life care” AND questionnaire OR telephone OR phone OR email OR survey OR surveys OR tool OR tools AND experience OR quality of health care OR experiences OR experienced OR satisfaction OR satisfied OR unsatisfied AND patient OR patients OR mother OR father OR mom OR dad OR parent OR parents OR guardian OR guardians OR caregiver OR caregivers OR spouse OR wife OR husband OR partner.
We also searched the gray literature (e.g., New York Academy of Medicine Gray Literature Report, Google, and the National Quality Measures Clearinghouse) using a similar search strategy for surveys or measures of family or informal caregiver experiences of end-of-life care. To identify additional resources, we reference-mined articles identified through the initial search and drew on members of our study team who are experts in the area of end-of-life care quality measurement (K. A. L. and J. M. T.) and an additional expert reviewer.
Article Selection
We included articles that 1) measured areas of patient, family member, or informal caregiver satisfaction and experience with end-of-life care and 2) included survey questions or instruments regarding patient/caregiver satisfaction or experience with end-of-life care. We excluded studies of pediatric populations and health care provider satisfaction with end-of-life care. Two reviewers, S. C. A. and A. M. W., a health services researcher and a palliative care clinician, respectively, with systematic review methodology experience first conducted independent dual review of identified references by title and abstract. Articles selected for full-text review were divided and independently screened by three reviewers (S. C. A., A. M. W., and R. A. P.). All articles included after full-text screening were divided and abstracted by study, survey, and survey question into a data abstraction file.
Data Analysis
First, we abstracted survey items from all 51 surveys in all of the selected articles to provide a general overview of the content areas covered by each survey. The research team first developed an initial list of potential content areas based on 1) our combined expertise in end-of-life care and 2) the National Consensus Project for Quality Palliative Care
Three reviewers (S. C. A., A. M. W., and J. P. L.) independently coded a sample of survey questions and met to review differences in coding and reach consensus on a revised coding scheme. The same reviewers repeated this process with a second sample of survey questions to develop a final coding scheme. The remaining survey questions were then divided between the reviewers and coded according to this scheme, with regular group meetings to review the process and achieve agreement. One reviewer (J. P. L.) conducted a final quality check by reviewing each of the survey items within each content area for consistency. Items that were misclassified were reconciled and reclassified into the most appropriate content area based on the final coding scheme.
Second, for feasibility, we used a subset of surveys that were published in two or more selected articles and abstracted more detailed information about: 1) who the respondents of the surveys were and how they were identified, 2) where the care was provided (e.g., inpatient hospice, intensive care unit [ICU], or in-home), 3) when the survey was administered (e.g., before patients' death or 2–4 weeks after death), and 4) how the survey was administered (e.g., telephone or face-to-face interview). These data were abstracted by two reviewers (A. M. W. and J. P. L.).
Results
Literature Flow
The Medline search identified 2097 articles and the PscyINFO/PsycTESTS search identified 892 articles (Fig. 1). After comparing results and removing duplicates, we identified 2094 unique articles, which we further narrowed to 215 relevant articles after title screening. Abstract screening reduced the number to 96 articles and a detailed article review found 84 articles that met inclusion criteria. We obtained additional surveys, measures, and reports from a search of the gray literature and other methods described previously. We reviewed these other sources, resulting in five additional articles, nine new surveys not identified in the literature review, and two toolkits that combined surveys and related resources identified elsewhere in our search. We excluded the toolkits from further study to avoid duplication. Of the 88 articles (Appendix lists the complete citations for the included articles; available from jpsmjournal.com) identified through the published and gray literature searches, and the nine surveys identified through the gray literature search, we identified 51 unique surveys containing 1256 unique survey questions that were available for abstraction of the survey content. Of these 51 surveys, a subset of 12 surveys (identified as used in more than two selected articles) were selected to abstract additional information on survey methods and administration.
The qualitative categorization of survey content resulted in 14 areas described in Table 1: bereavement support, caregiver support, environment, financial needs, information and care planning, overall experience, symptom management, personal care, provider care, psychosocial care, quality of death, responsiveness and timing, spiritual/religious/existential care, and other (relating to demographic questions or questions not directly related to the experience of care).
Table 1Content Areas of Surveys and Their Definitions
Content Area
Definition
Bereavement support
Related to support and services provided to family after death of patient
Caregiver support
Related to support and services available or provided to caregiver
Environment
Related to room, noise, comfort of facility
Financial needs
Related to patient's financial needs, health care costs, and funeral planning
Information and care planning
Related to advance care planning, communication, and decision-making between patient, family & providers, discussing goals/preferences for care, information related to informal care for patient at home
Overall experience
General assessments of care received; overall experience
Personal care
Related to the quality of personal care provided in facility or home (bathing, eating, and so on)
Provider care
Related to quality of and satisfaction with care given by specified provider (doctor, nurse, social worker, staff, and so on)
Psychosocial care
Related to emotional well-being, social support, social needs, and whole-person needs of patient
Quality of death
Related to experience of care received immediately before dying for patient/family (e.g., “During the final hours of your family member's life …”)
Responsiveness and timing
Related to responsiveness to needs of patient/caregiver, including availability of hospice staff and timing of hospice referral
Spiritual, religious, and existential care
Related to religious aspects of care and/or patients' spiritual/existential needs and well-being
Symptom management
Related to experience and management of symptoms such as pain and shortness of breath
Other
Demographic information about patient or type of facility (unrelated to satisfaction or experience with care)
Table 2 shows information about the unique items and content areas of each survey. None of the 51 identified surveys included all 14 content areas. Three surveys addressed 12 content areas (Family Evaluation of Hospice Care [FEHC], After-death Bereaved Family Member Interview [ADBFI], and Satisfaction scale for Family members receiving Inpatient Palliative Care [Sat-Fam-IPC]), two surveys addressed 11 areas (Family Assessment of Treatment at End of Life [FATE] & FATE-Short Form [FATE-S] and Canadian Health Care Evaluation Project), and four surveys addressed nine content areas (Quality of Dying and Death, Family Satisfaction with Care Questionnaire, Good Death Inventory, and Steele 2002 Patient satisfaction survey). Half (n=25) of the surveys were limited to five or fewer content areas, indicating their narrow scope.
Fig. 2 displays contents areas and their distributions among the 51 surveys. Information and care planning were the most frequent content area, present in 45 (88%) of the 51 surveys. Provider care (n=35; 68.6%), symptom management (n=30; 58.8%), overall experience (n=28; 55%), and spiritual/religious/existential concerns (n=26; 51%) were present in more than half of the surveys. Several areas were less frequent (i.e., covered in 16 or fewer surveys) among the identified surveys: other, personal care, bereavement care, quality of death, financial needs, and environment.
Fig. 2Frequency of each content area among 50 surveys.
We identified 12 of the 51 surveys that were used in two or more articles and abstracted more detailed information from the articles about the methods and administration of these surveys (Table 3).
Table 3Detailed Abstraction From Survey Subset (12 Surveys and 51 Articles)
Survey
Citation
Who: Respondent
When: Timing of Survey Administered
Where: Health/Care Context/Setting
How: Mode of Survey Administration
After Death Bereaved Family Member Interview (n=9)
Arcand et al, 2009
Close relatives
10 weeks–3 months after death
Nursing home
Telephone interview
Baker et al, 2000
Surrogates: person responsible for making decisions in the even the patient unable
4–10 Weeks after death
Hospitals
Telephone interview
Bakitas et al, 2008
Contact person identified in patient's medical record
3–6 Months after death
Cancer centers
Telephone interview
Cohen et al, 2012
Caregivers defined as the person most involved in the resident's care during the last month of life and who also visited at least once during this time
Not reported
Long-term care setting
Telephone interview
Gelfman et al, 2008
Family members
3 Months–200 days after death
Medical Center
Telephone interview
Hallenbeck et al, 2007
Family member listed with contact telephone number in patient records
At least 3 months after death
Veterans Affairs (VA) inpatient hospice
Telephone interview
Shega et al, 2008
Primary caregivers
2–6 Months after death
Geriatrics clinics (enrolled and not enrolled in hospice)
Telephone interview
Teno et al, 2001
Family member
3–6 Months after death
Nursing homes, an outpatient hospice service, and an academic medical center
Telephone interview
End-of-Life Care in Acute Care Hospitals (n=2)
Heyland et al, 2009
Patients and caregivers
Not reported
Inpatient, outpatient, home care programs at medical center
In-person interview
Heyland et al, 2005
One family member who made at least one visit to the patient
3–6 Weeks after death
University-affiliated intensive care units (ICUs)
In-person interview
EOLD- Satisfaction with Care & Comfort Assessment in Dying (n=3)
Cohen et al, 2012
Caregivers most involved in care during the last month of life and visited at least once
Not reported
Long-term care settings
Paper (mailed)
Kiely et al, 2006
Residents or health care proxies (if resident died before follow-up)
Baseline and quarterly for up to 18 months before death; proxies 2 and 7 months after death
Nursing homes
In-person interview
van der Steen et al, 2009
Family caregiver most involved in the last months of life
2 Months after death
Nursing homes
Paper (mailed, at site)
Family Satisfaction with Advanced Cancer Care (n=10)
Aoun et al, 2010
Patient carer
Not reported
Inpatient and home-based palliative services
Paper (at site)
Carter et al, 2011
Caregivers
Not reported
Oncology outpatient clinic
Computer
Follwell et al, 2009
Oncology patients
Not reported
Hospital
In-person interview
Kristjanson et al, 1997
Family members
36 Hours after admission to palliative care unit; 2 weeks after admission to home care program
Inpatient medical units, palliative care units, and home care programs
In-person interview
Lo et al, 2009a
Patients and primary caregivers
Not reported
Hospital
Paper (at site)
Lo et al, 2009b
Oncology patients
Baseline, 1 week, and 1 month after Oncology Palliative Care Clinic consultation
Hospital
Paper (at site)
Meyers and Gray, 2001
Primary caregivers
Not reported
Hospice organizations
Telephone interview
Ringdal et al, 2003a
Family members who were close to patients
1 Month after death
Palliative medicine unit in hospital
Paper (mailed)
Ringdal et al, 2003b
Family members
1 Month after death
Hospital
Paper (mailed)
Family Assessment of Treatment of End-of-Life survey (n=4 or 5??)
Alici et al, 2010
Family members (next of kin, primary contact in EMR, Power of Attorney for Health Care)
6–10 Weeks after death
VA facility where patient received care in the last month of life—inpatient or outpatient
Telephone interview
Casarett et al, 2010
One family member per patient
Approximately 6 weeks after death
VA acute and long-term care
Telephone interview
Finlay et al, 2008
Next of kin
Approximately 6 weeks after death
VA medical centers
Telephone interview
Lu et al, 2010
Family members
Approximately 10 weeks after death
VA medical centers
In-person interview
Smith et al, 2011
Family members in the medical record at VA or another family member identified by original informant
Approximately 6 weeks after death
VA medical centers
Telephone interview; Mailed paper
Family Evaluation of Hospice Care (n=8)
Connor et al, 2005
Bereaved family members
1–3 Months after death
Hospice
Paper (mailed)
Mitchell et al, 2007
Bereaved family members
1–3 Months after death
Hospice
Paper (mailed)
Rhodes et al, 2008
Family members
Not reported
Hospice
Paper (mailed)
Rhodes et al, 2007
Family member
1–3 Months after death
Hospice
Paper (mailed)
Schockett et al, 2005
Family members identified by hospice
3–6 Months after death
Hospice
Mailed paper; telephone interview
Teno et al, 2004
Informant listed on the death certificate (usually a close family member) or another person identified by informant
Not reported
Last place of care at which the patient spent more than 48 hours
Telephone interview
Teno et al, 2007
Family members identified by the hospices
1–3 Months after death
Hospice
Paper (mailed)
York et al, 2009
Family members or caregivers
Not reported
Hospice-affiliated facilities, homes, hospitals, and LTC facilities
Paper (mailed)
Family Satisfaction in the ICU (n=3)
Curtis et al, 2008
Family members
4–6 Weeks after death
University-affiliated ICU
In-person interview; paper (Mailed)
Gries et al, 2008
Family members
1–2 Months after death
Medical centers
Paper (mailed)
Lewis-Newby et al, 2011
Family members
4–6 Weeks after death
Medical center/trauma center
Paper (mailed)
Quality of Dying and Death (n=6)
Hales et al, 2012
Bereaved family members
8–10 Months after death
Hospital/cancer center
In-person interview; telephone interview
Johnson et al, 2006
Next of kin
12–14 Weeks after death
Hospital
Paper (mailed)
Lewis-Newby et al, 2011
Family member
4–6 Weeks after death
Medical center/trauma center
Paper (mailed)
Mularski et al, 2004
Family members
4 Months after death
Medical center ICU; VA ICU
In-person interview
Mularski et al, 2005
Family members
4–12 Months after death
Medical center ICU; VA ICU
In-person interview
Norris et al, 2007
Family member
Not reported
Geographic locations
In-person interview
Quality of End-of-Life Care and Satisfaction with Treatment (n=3)
Astrow et al, 2007
Patients
Not reported
Cancer center
In-person interview
Sulmasy et al, 2002a
Patients with do-not-resuscitate (DNR) order; family members
2–7 Days after DNR order
Hospitals
In-person interview
Sulmasy et al, 2002b
Patients
Not reported
Hospitals
In-person interview
Regional Study of Care for the Dying (RSCD) (n=3)
Fakhoury et al, 1996
Informal caregivers (defined as relatives or close friends/neighbors)
10 Months after death
Health districts
In-person interview; telephone interview
Fakhoury et al, 1997a
Bereaved carers, relatives, and friends who knew the most about the last year of life
Not reported (cited another paper reporting on RSCD methodology)
Health districts
In-person interview; telephone interview
Fakhoury et al, 1997b
Informal caregivers/family members who knew about the last year of life
10 Months after death
Health districts
In-person interview; telephone interview
Sat-Fam-IPC (n=2)
Morita et al, 2002a
Primary caregivers
Not reported
Inpatient palliative care unit
Paper (mailed)
Morita et al, 2002b
Family members
Within 1 year after death
Inpatient palliative care unit
Paper (mailed)
Views of Informal Carers Evaluation of Services (n=4)
Addington-Hall et al, 2009
Bereaved relative who registered the death
3–9 Months after death
Hospital; inpatient hospice
Paper (mailed)
Beccaro et al, 2010
Caregivers
100–372 Days after death
Not reported
In-person interview
Costantini et al, 2005
Nonprofessional caregiver (defined as child, spouse, family, and friend)
100–372 Days after death
Not reported
In-person interview
Morasso et al, 2008
Nonprofessional caregivers
100–372 Days after death
Not reported
In-person interview
EMR = electronic medical records; LTC = long-term care.
Most articles (n=26; 46%) reported that the surveys were administered to “family members” or “close relatives.” The next frequent designation was “caregiver” (n=17; 30%), followed by designations specified as “health care proxy,” “decision-making surrogate,” “Power of Attorney,” or “medical contact” (n=10; 17%). Specific descriptions about how the family member or caregiver was identified by the researchers (or health care entity administering the survey) were rare. The few articles in which a more detailed explanation was provided reported that family member respondents were identified by 1) contacting the person who signed the death certificate, 2) determining the “next of kin” or “health care proxy” from the patients' medical records, and 3) determining which family member “knew the most about the patient at the end of life.” The remaining four (7%) articles administered the survey to patients before death.
Timing of Survey Administration
There was considerable variation in timing of survey administration across articles and among the same surveys, indicating that there is little consensus about when each survey should be administered. Surveys were administered to patients before death (i.e., 2–7 days after do-not-resuscitate order) in four (7%) articles and 37 (65%) articles administered surveys after death. However, the timing of survey administration was not described in 16 articles (43%). Among the articles reporting about after-death surveys, the shortest time frame was three to six weeks and the longest time frame was up to 372 days after death; most (n=21; 56%) of these articles administered surveys approximately within one to six months after death.
Method of Survey Administration
We examined the specific method of survey administration reported by the articles, which included in-person paper survey or interview (n=23; 40%), mailed paper survey (n=20; 35%), telephone interview (n=19; 33%), and one (2%) article reported using computers for survey administration. Among these, eight (14%) articles reported using a mixed mode design (i.e., a combination of the above survey modes, such as in-person and telephone interviews). Two (3.5%) articles did not report the survey administration method.
Health Care Setting of Survey Administration
As reported in the articles, inpatient hospitals, ICUs, and trauma centers were the most frequent health care services and settings evaluated (n=21; 37%). Articles that specifically mentioned hospice and palliative care services including inpatient and outpatient home-based care settings were the next most frequent (n=16; 28%). Other settings included Veterans Affairs medical centers (n=8; 14%); nursing homes and long-term care facilities (n=6; 11%); cancer centers (n=4; 7%); and geographic areas, health districts, or “last place of care” (n=5; 9%). Six (11%) articles assessed more than one type of setting and three (5%) articles did not report the health care setting. Several surveys are care service and/or setting-specific, including the FEHC, which is designed to evaluate hospice care within a variety of settings from inpatient to home-based hospice care. Furthermore, Family Satisfaction in the ICU, End of Life Care in Acute Care Hospitals, Sat-Fam-IPC were developed to assess specific types of end-of-life care settings (ICU, acute care, and inpatient palliative care, respectively).
Discussion
The increasing interest in quality measurement of end-of-life care has resulted in the use of many survey instruments to measure satisfaction with and experiences of care, an important component of quality for this field.
The unique contexts of end-of-life care raise several important challenges to the development of a quality assessment tool focused on the family, informal caregiver, and patient experiences of care. This systematic review of articles and surveys evaluated instruments currently in use, within the context of these challenges, to inform next steps in research and policy.
We found variation in content areas of all available surveys, suggesting that some surveys in use are more comprehensive than others. There is heterogeneity in the content covered in each of the surveys, but we did find certain content areas to be consistent across surveys, perhaps suggesting greater prioritization of these areas within the field. Some examples of content areas captured in most surveys include: “information and care planning,” “provider care,” “overall experience,” “symptom management,” and “psychosocial care.” This finding is expected since previous research on the aspects of end-of-life care deemed most important to patients, families, and providers appraised these content areas as very important.
However, other aspects that also were considered important, such as financial needs, environmental aspects of the care setting, and caregiver and bereavement support were rarely assessed in the available surveys. These areas of end-of-life care are highly salient to family members and caregivers of the patients.
Future work should investigate the suitability of including these topics in surveys to encourage their use for quality improvement and accountability of health care organizations.
We also uncovered variation in practice regarding how family or informal caregiver respondents are identified, the timing and method of survey administration, and the type of health care setting being assessed. The process for identification of proxy respondents was not described clearly by many studies, whereas others indicated that the respondent included the patients' surrogate or “next of kin” as reported in medical records. There is no uniform way of identifying the family or caregiver respondent for these surveys. Given difficulty in establishing valid survey responses from bereaved family members or informal caregivers,
the strategic identification of proxy respondents, and their impact on valid and reliable quality measurement is an area worthy of future research.
The reported timing of administration of after-death studies varied substantially from three weeks to one year after death. This variation was likely influenced, in part, by the variation in care settings, the purpose of research for each of the studies, and the availability of after-death data (e.g., the Regional Study of the Dying used samples of death certificates from 20 health districts in the United Kingdom
). Some research has shown that timing of after-death surveys may influence the reliability of caregivers' perceptions of their loved ones' pain severity and other physical symptoms at four and nine months.
Regardless of when surveys are administered, efforts should be made to standardize timing of after-death surveys used for quality to improve comparability of assessments.
Our review found that the family is a critical target for assessing end-of-life care experience and the reliance on proxy respondents for after-death surveys is likely because of the advanced stage of illness (e.g., dementia) or intensive treatment (e.g., feeding tube or respirator) that prohibits pre-death, patient-administered surveys. This raises the question of how best to evaluate the patient's care and assess informed and patient-centered decision making around goals of care and end-of-life interventions. Our review suggests that future research should investigate strategies to identify the optimal survey respondent and timing for after-death surveys with the goal of balancing the collection of accurate information without burdening bereaved family members.
After-death family and informal caregiver experience surveys also have been administered using in-person, telephone, and mailed interviews, with much variation across the different surveys. Understanding how survey administration affects reports of family or informal caregiver experience will be important if such surveys are to be used broadly to measure quality. Furthermore, the diversity of health care delivery systems for end-of-life care (e.g., residential and nursing home facilities, hospitals, ICUs, and home-based or outpatient hospices) presents challenges to the comparability of a uniform assessment across care services and settings. Studies should investigate whether experience of care can be adequately compared across care settings and consider the use of different survey versions tailored to capture the specific needs or aspects of different care settings. This is particularly important for emerging models of care, such as Accountable Care Organizations, which present both risks and opportunities to provide care that is simultaneously high quality and cost-efficient.
Our review has some limitations. Although we used three different databases of published literature and supplemented our primary search with reference-mining and expert guidance, as with any systematic literature review, our search strategy may have missed some relevant articles. Our review may omit relevant surveys not published in the peer-reviewed literature and does not include newer surveys developed and described after our literature search. The heterogeneity found among articles and surveys was too great to conduct a meta-analysis. There was limited information provided in the published studies about how assessment surveys are used in practice by health care institutions versus by researchers. Understanding how health care institutions administer and use these surveys for quality improvement and reimbursement practices is important for further development of comprehensive surveys; future research is needed to address these issues.
A crucial aspect for quality measurement of care provided to patients with advanced illness is understanding and improving the patient and family experience of care provided at the end of life. This comprehensive review of the literature identified several surveys aimed at measuring the patient's, bereaved family member's, or informal caregiver's experience and satisfaction with end-of-life care. We identified variation in areas covered as well as practical issues such as method and timing of administration of surveys. Further research should focus on standardizing surveys and administration methods so that experiences of care can be measured reliably and be fairly compared across institutions and care settings.
Disclosures and Acknowledgments
The literature review on which this publication is based was performed under Contract HHSM-500–2012-00126G, entitled, “Hospice Experience of Care Survey,” funded by the Centers for Medicare and Medicaid Services, Department of Health and Human Services. The content of this publication neither necessarily reflect the views or policies of the Department of Health and Human Services nor does the mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government. The authors assume full responsibility for the accuracy and completeness of the ideas presented. Dr. Lendon was supported by the Veterans Affairs (VA) Office of Academic Affiliations through the VA Health Services Research and Development Advanced Fellowship Program. Dr. Walling was supported by National Institutes of Health (NIH)/National Center for Advancing Translational Science UCLA CTSI grant no. UL1TR000124 and the NIH loan repayment program. Dr. Ahluwalia was supported by a Career Development Award from the National Palliative Care Research Center. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.
The authors declare no conflicts of interest.
Appendix. Citations of the 88 Articles Included From the Systematic Review
Tabled
1
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Citation
1
Adams CE, Bader J, Horn KV. Timing of hospice referral: assessing satisfaction while the patient receives hospice services. Home Health Care Manag Pract 2009;21:109–116.
2
Addington-Hall J, McCarthy M. Dying from cancer: results of a national population-based investigation. Palliat Med 1995;9:295–305.
3
Addington-Hall JM, O'Callaghan AC. A comparison of the quality of care provided to cancer patients in the UK in the last three months of life in in-patient hospices compared with hospitals, from the perspective of bereaved relatives: results from a survey using the VOICES questionnaire. Palliat Med 2009;3:190–197.
4
Aoun S, Bird S, Kristjanson LJ, Currow D. Reliability testing of the FAMCARE-2 scale: measuring family carer satisfaction with palliative care. Palliat Med 2010;24:674–681.
5
Arcand M, Monette J, Monette M, et al. Educating nursing home staff about the progression of dementia and the comfort care option: impact on family satisfaction with end-of-life care. J Am Med Dir Assoc 2009;10:50–55.
6
Archer KC, Boyle DP. Toward a measure of caregiver satisfaction with hospice social services. Hosp J 1999;14:1–15.
7
Astrow AB, Wexler A, Texeira K, He MK, Sulmasy DP. Is failure to meet spiritual needs associated with cancer patients' perceptions of quality of care and their satisfaction with care? J Clin Oncol 2007;25:5753–5757.
8
Baker R, Wu AW, Teno JM, et al. Family satisfaction with end-of-life care in seriously ill hospitalized adults. J Am Geriatr Soc 2000;48(5 Suppl):S61–S69.
9
Bakitas M, Ahles TA, Skalla K, et al. Proxy perspectives regarding end-of-life care for persons with cancer. Cancer 2008;112:1854–1861.
10
Beccaro M, Caraceni A, Costantini M. 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. J Pain Symptom Manage 2010;39:1003–1015.
11
Billings JA, Kolton E. Family satisfaction and bereavement care following death in the hospital. J Palliat Med 1999;2:33–49.
12
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