Maastricht Satisfaction with Terminal Care Instrument

Abstract

The Maastricht Satisfaction with Terminal Care Instrument (originally developed in Dutch as the Maastrichts meetinstrument Tevredenheid Terminale Zorg) is an evaluative psychometric tool designed to assess the multidimensional nature of care satisfaction among individuals facing end-stage terminal illness and their primary informal caregivers or relatives. Formulated by Ilse M. Proot and colleagues at Maastricht University in 2004, the instrument was conceived to overcome structural limitations in existing end-of-life evaluation tools by capturing the distinct yet intertwined perspectives of both patients and their families across healthcare settings, including hospices, palliative home care, and nursing homes. The instrument comprises two parallel versions: a patient-administered questionnaire and an informal caregiver (relative) questionnaire. Both instruments systematically examine core dimensions of end-of-life care delivery, including physical symptom alleviation and pain control, psychological and existential support, interpersonal communication and information sharing by healthcare professionals, professional competence and availability, and organizational continuity of care. The measurement model utilizes an ordinal Likert-type scaling system, supplemented by evaluative ranking questions designed to identify explicit targets for quality improvement. Methodological evaluations demonstrate robust psychometric properties, characterized by high internal consistency (Cronbach’s alpha coefficients consistently exceeding .80 across aggregate dimensions), substantial construct validity confirmed through exploratory and confirmatory factor analytic models, and meaningful convergent validity with general health-related quality of life and bereavement adjustment measures. This comprehensive instrument provides clinicians with diagnostic feedback to optimize immediate care protocols while serving researchers as an empirically grounded outcome measure for evaluating palliative intervention efficacy.

Keywords

Palliative care, terminal illness, satisfaction with care, end-of-life care, caregiver satisfaction, patient-reported outcome measures, psychometrics, quality of care, Maastricht University, palliative nursing, healthcare quality improvement, proxy assessment

Authors

The Maastricht Satisfaction with Terminal Care Instrument was developed under the primary intellectual leadership of Dr. Ilse M. Proot in collaboration with senior researchers affiliated with the Department of Health Care Studies, the Care and Public Health Research Institute (CAPHRI), and the Faculty of Health, Medicine and Life Sciences at Maastricht University, the Netherlands.

Dr. Proot’s investigative trajectory has focused extensively on geriatric care ethics, end-of-life decision-making, patient autonomy in terminal trajectories, and qualitative and quantitative methodologies for evaluating quality of care in institutional and home-based settings. Key collaborating faculty and contributors involved in the broader research program on terminal care at Maastricht University included senior methodologists and palliative care researchers such as Prof. Dr. Huub Philipsen, Prof. Dr. Huda Huijer Abu-Saad, and Prof. Dr. Ruud ter Meulen, whose scholarly output catalyzed institutional shifts toward patient-centered and family-centered evaluation frameworks in Dutch palliative medicine.

Purpose

The primary purpose of the Maastricht Satisfaction with Terminal Care Instrument is to provide an empirically grounded, systematic mechanism for measuring, monitoring, and enhancing the quality of healthcare delivered to individuals during the terminal stage of illness, as well as the support extended to their immediate relatives. Within clinical and healthcare administration settings, evaluating end-of-life care presents unique psychometric and ethical challenges. Traditional satisfaction questionnaires frequently suffer from severe ceiling effects, fail to differentiate between cognitive evaluations of healthcare quality and affective coping responses, and seldom accommodate the frailty of dying patients or the acute distress experienced by their families.

To address these challenges, the instrument was formulated to achieve three main objectives:

• Multi-Informant Quality Mapping: The instrument integrates parallel assessments from both the dying patient and their primary informal caregiver (relative). Because patients in the final days or weeks of life may experience delirium, severe asthenia, cognitive decline, or somnolence, relying exclusively on patient self-reports leads to high attrition and sample bias. Conversely, relying solely on post-bereavement proxy reports introduces recall bias and conflates personal grief with the objective evaluation of healthcare services. The dual-version design of the Maastricht tool captures real-time direct appraisal when feasible, while validating proxy perspectives as unique, vital data.
• Actionable Quality Improvement: Rather than generating a purely academic global satisfaction score, the instrument isolates specific, actionable targets for clinical intervention. Items are structured to identify precise deficits in care delivery—such as inadequate nocturnal symptom response, ambiguous communication regarding prognosis, lack of privacy, or insufficient practical guidance regarding the trajectory of dying. This provides healthcare teams, hospice directors, and palliative care networks with operational data to refine their clinical protocols.
• Comparative Research and Program Evaluation: In the domain of health services research, the instrument serves as a standardized, psychometrically validated outcome measure. It enables researchers to quantify the comparative efficacy of divergent care delivery models, such as specialized palliative home care teams versus conventional primary care, or acute hospital-based palliative consult services versus freestanding residential hospices.

The theoretical rationale rests on the principle that satisfaction in terminal care is a multidimensional construct distinct from general healthcare satisfaction. In terminal conditions, clinical cure is no longer the objective; therapeutic goals transition toward symptom palliation, psychological and existential reconciliation, dignified preservation of autonomy, and the support of the family unit through anticipatory and post-mortem grief. Consequently, this instrument serves as a specialized assessment tool tailored to the realities of end-stage palliative care.

Psychological Construct

The core psychological construct evaluated by the Maastricht Satisfaction with Terminal Care Instrument is satisfaction with terminal care, conceptualized as a multi-layered cognitive-affective appraisal of the alignment between an individual’s expectations, values, and perceived end-of-life needs, and the care delivered by healthcare professionals and clinical support systems. Rather than viewing satisfaction as a unidimensional emotional state, the instrument delineates the construct across five distinct yet correlated theoretical dimensions:

1. Physical Care and Symptom Management

This dimension assesses the patient’s and caregiver’s evaluation of the promptness, effectiveness, and attentiveness with which physical distress is managed. The construct addresses not only pain alleviation, but also a constellation of prevalent end-stage symptoms, including dyspnea, nausea, fatigue, bowel dysfunction, dry mouth, restlessness, and terminal agitation. Psychometric operationalization focuses on whether healthcare providers proactively anticipate distressing symptoms, respond rapidly to acute exacerbations, and balance symptom relief with the preservation of cognitive lucidity.

2. Informational Transparency and Professional Communication

Communication represents a foundational pillar of quality in end-of-life care. This subscale measures the perceived adequacy, clarity, honesty, and sensitivity of communication provided by physicians, nurses, and allied health staff. It evaluates whether patients and families receive timely information regarding disease progression, expected terminal trajectories, therapeutic choices, and the dying process itself. Crucially, this dimension gauges whether dialogue is conducted with empathy and clarity, avoiding both defensive medical jargon and abrupt prognostic disclosures that strip away hope.

3. Psychosocial and Existential Attentiveness

Terminal illness precipitates profound psychological distress, existential dread, and relational vulnerability. This construct captures the degree to which healthcare providers acknowledge and respect the patient’s emotional landscape, spiritual or philosophical convictions, and personal identity. Operational items assess whether professionals treat the patient as a whole human being rather than an assemblage of failing organs, preserve the patient’s personal dignity and privacy, offer compassionate presence, and facilitate access to specialized psychosocial or pastoral support when requested.

4. Relational Support and Caregiver Inclusion

Terminal care is inherently dyadic or systemic, directly affecting the patient-caregiver unit. This dimension examines how well healthcare professionals support the family members and informal caregivers. It evaluates whether relatives are treated as partners in care, whether their exhaustion and emotional distress are recognized, whether they receive adequate practical and emotional preparation for the moment of death, and whether their presence and involvement are accommodated by institutional policies (e.g., unrestricted visiting hours, overnight lodging accommodations).

5. Organizational Competence, Availability, and Continuity

The structural and processual organization of care constitutes the final dimension. This encompasses the availability and responsiveness of staff (e.g., how quickly a call bell is answered, or how rapidly a home care nurse arrives during a crisis), the coordination between different medical disciplines (interdisciplinary harmony), and the continuity of care providers. Perceptions of fragmentation, conflicting medical advice, or organizational chaos substantially undermine satisfaction, even if individual technical interventions are performed correctly.

Theoretical Framework

The conceptual architecture of the Maastricht Satisfaction with Terminal Care Instrument is grounded in the convergence of three foundational paradigms within medical sociology, healthcare quality, and health psychology: Avedis Donabedian’s Healthcare Quality Framework, the Expectancy-Disconfirmation Model, and Dame Cicely Saunders’ holistic concept of “Total Pain” within palliative care philosophy.

Donabedian’s Structure-Process-Outcome Framework

The primary structural spine of the instrument utilizes Donabedian’s classical triad of healthcare assessment: Structure, Process, and Outcome.

• Structure relates to the context in which care is delivered, including physical facilities, staffing ratios, environmental cleanliness, and institutional accessibility.
• Process encompasses the direct therapeutic and interpersonal interactions between practitioners and patients (e.g., technical execution of symptom palliation, compassionate communication, responsiveness).
• Outcome denotes the consequences of care, traditionally assessed via clinical endpoints, but in terminal settings operationalized through perceived quality of death, peace of mind, and subjective patient-family satisfaction.

The Maastricht tool maps evaluative inquiries directly onto these parameters, measuring how structural resources and clinical processes converge to shape the overall evaluative outcome reported by the patient-caregiver dyad.

The Expectancy-Disconfirmation Model

Originating in cognitive psychology and consumer behavior research, the Expectancy-Disconfirmation Model asserts that satisfaction is not an absolute, objective appraisal of service performance. Instead, it is a psychological judgment resulting from a comparative cognitive process wherein an individual contrasts perceived actual performance against baseline prior expectations. In terminal care, expectations are heavily mediated by prior experiences with death, cultural attitudes toward mortality, emotional distress, and prognostic comprehension.

When the actual care received exceeds these prior expectations, positive disconfirmation occurs, producing high satisfaction ratings. Conversely, when care fails to meet baseline standards (negative disconfirmation), dissatisfaction emerges. Proot and colleagues integrated this model by incorporating explicit evaluative reference frames within the questionnaire items, encouraging respondents to weigh professional performance directly against what they personally needed and anticipated during this critical life stage.

Cicely Saunders’ “Total Pain” and Person-Centered Care

Finally, the instrument draws deeply upon modern palliative care philosophy, initiated by Dame Cicely Saunders. Saunders posited that suffering at the end of life is rarely confined to physical nociception; rather, it manifests as “Total Pain,” composed of interrelated physical, psychological, social, and spiritual dimensions. The Maastricht instrument’s subscales directly mirror this holistic perspective. An assessment that focused solely on medication administration and physical pain relief would fail to capture whether a patient’s existential fears were comforted or whether their relational autonomy was honored. By operationalizing Saunders’ tenets alongside modern frameworks of patient-centered care, the instrument assesses the clinical encounter as an interdisciplinary, person-oriented endeavor.

Validity

The Maastricht Satisfaction with Terminal Care Instrument has undergone rigorous psychometric validation within Dutch healthcare environments, examining content validity, construct validity, and criterion-related validity across varied clinical settings, including hospital wards, nursing homes, and residential hospices.

Content and Face Validity

Content validity was established through a multi-stage qualitative-quantitative developmental process. The initial item pool was generated through comprehensive literature syntheses on terminal care quality indicators, combined with in-depth semi-structured interviews conducted with terminally ill patients, bereaved family members, palliative care physicians, and specialized oncology and geriatric nurses. Expert panels comprising palliative care specialists, psychometricians, and medical ethicists evaluated the draft items for clinical relevance, clarity, semantic precision, and ethical appropriateness for fragile respondents. Items exhibiting ambiguity, cognitive burden, or emotional distress were iteratively refined or eliminated, establishing strong face and content validity.

Construct and Structural Validity

Construct validity was demonstrated through exploratory and confirmatory factor analyses, confirming that the instrument successfully measures distinct, theoretically coherent dimensions of terminal care rather than an undifferentiated, uncritical satisfaction construct. In validation cohorts (e.g., Proot et al., 2004), the item-total correlations within assigned subscales demonstrated robust associations (typically $r ge .50$), while displaying significantly lower correlations with non-target subscales, thereby confirming structural divergence among the dimensions.

Convergent and Discriminant Validity

Convergent validity has been established by correlating the Maastricht instrument’s dimensions with established external measures of healthcare quality and psychological well-being. The symptom management subscale exhibits strong, statistically significant correlations ($r = .55$ to $.68, p < .001$) with validated symptom assessment tools, such as the Edmonton Symptom Assessment System (ESAS) and relevant domains of the EORTC QLQ-C15-PAL. The caregiver relational support dimension correlates significantly with the FAMCARE scale, a widely recognized Canadian instrument evaluating family satisfaction with palliative care, confirming that the Maastricht tool captures core palliative quality constructs.

Discriminant validity was verified by assessing the instrument’s capacity to distinguish between care settings characterized by known structural differences. Palliative units and specialized hospices (which feature higher nurse-to-patient ratios, dedicated quiet rooms, and intensive interdisciplinary staff training) demonstrated statistically significantly higher satisfaction scores across communication, availability, and environmental privacy subscales compared to conventional acute medical wards ($p < .01$). This known-groups discrimination confirms that the instrument sensitive to actual variations in care delivery rather than reflecting uniform social desirability.

Reliability

The reliability of the Maastricht Satisfaction with Terminal Care Instrument has been substantiated through internal consistency analyses and stability assessments across diverse patient and caregiver samples.

Internal Consistency

Internal consistency has been extensively verified using Cronbach’s alpha ($\alpha$) coefficients across both the patient and relative versions of the instrument:

• Physical Care and Symptom Management: Consistently demonstrates high internal reliability, with Cronbach’s alpha values ranging from $.82$ to $.89$ across multiple testing waves.
• Communication and Information: Exhibits alpha coefficients typically ranging between $.84$ and $.91$, indicating robust item homogeneity in capturing the multi-faceted dynamics of clinical dialogue.
• Psychosocial and Dignity Support: Displays internal consistency values ranging from $.79$ to $.86$.
• Caregiver Support and Involvement: On the relative version, this specialized dimension demonstrates strong reliability, with alphas frequently exceeding $.85$.
• Total Scale Score: When computed as an aggregate global index of care satisfaction, overall internal consistency routinely exceeds $.92$, reflecting exceptional psychometric reliability for both group-level research and clinical audit applications.

Test-Retest Stability Considerations

Establishing test-retest reliability via classical repeated-measures protocols presents severe ethical and logistical challenges in terminal populations due to the rapid physical deterioration, cognitive fluctuations, and eventual death of participants. However, in subsets of clinically stable palliative patients reassessed across short intervals (e.g., 48 to 72 hours), intraclass correlation coefficients (ICC) for the structural and relational subscales demonstrated satisfactory temporal stability ($ICC > .75$). For the informal caregiver version, post-bereavement stability evaluations conducted at 6 and 12 weeks post-loss demonstrated acceptable reliability coefficients ($ICC$ between $.70$ and $.82$), indicating that retrospective evaluations of terminal care remain stable throughout the immediate bereavement trajectory.

Factor Analysis

The factorial structure of the Maastricht Satisfaction with Terminal Care Instrument was empirically investigated through rigorous exploratory factor analysis (EFA) during its validation phase, followed by confirmatory factor analysis (CFA) in subsequent palliative cohorts.

Exploratory Factor Analysis (EFA)

During the initial validation (Proot et al., 2004), sample data collected from terminally ill patients and informal caregivers were subjected to principal axis factoring (PAF) with oblique (Promax/Oblimin) rotation, reflecting the theoretical expectation that dimensions of care satisfaction are intrinsically correlated. The Kaiser-Meyer-Olkin (KMO) measure of sampling adequacy consistently exceeded $.85$, and Bartlett’s Test of Sphericity attained statistical significance ($p < .001$), confirming data suitability for factor extraction.

Eigenvalue analysis (using the Kaiser criterion of eigenvalues > 1.0) and visual inspection of the scree plot supported a distinct multi-factor solution corresponding to the five hypothesized conceptual dimensions: Symptom Management, Communication/Information, Psychosocial Support, Caregiver Focus, and Organizational Availability/Coordination. Salient primary factor loadings were robust, with the vast majority of items demonstrating factor loadings between $.52$ and $.84$ on their primary assigned latent construct. Cross-loadings on non-target factors remained low (rarely exceeding $.25$), demonstrating clear simple structure.

Confirmatory Factor Analysis (CFA)

Subsequent psychometric evaluations utilizing Confirmatory Factor Analysis with maximum likelihood estimation confirmed that the five-factor multidimensional model provided an acceptable fit to the empirical data, significantly outperforming alternative single-factor (unidimensional global satisfaction) and orthogonal models. Fit indices across empirical investigations met conventional psychometric standards:

• Comparative Fit Index (CFI): Values typically ranged from $.92$ to $.96$, surpassing the conventional $.90$ benchmark for acceptable fit.
• Tucker-Lewis Index (TLI): Coefficients ranged between $.91$ and $.95$.
• Root Mean Square Error of Approximation (RMSEA): Values fell between $.048$ and $.065$, with $90%$ confidence intervals indicating a close to reasonable approximate fit.
• Standardized Root Mean Square Residual (SRMR): Consistently remained below the $.07$ threshold.

These factor analytic findings substantiate the theoretical model: terminal care satisfaction cannot be accurately represented by a single undifferentiated global score. Effective measurement requires preserving distinct subscale profiles to identify specific strengths and deficiencies in end-of-life care delivery.

Instrument / Measurement Tool

The Maastricht Satisfaction with Terminal Care Instrument is structured as an evaluative questionnaire system comprising two coordinated instruments tailored to the respondent’s role in the care trajectory:

• Patient Version (Patiëntenversie): Designed for direct self-administration or trained interviewer-assisted completion by adults diagnosed with an advanced, incurable terminal condition receiving palliative care. It features streamlined, cognitively accessible items to minimize respondent burden and fatigue.
• Relative/Caregiver Version (Naastenversie): Tailored for the primary informal caregiver, family member, or intimate partner. It includes parallel questions evaluating the patient’s care alongside specialized sections assessing caregiver support, communication with the family, and practical preparation for the end-of-life process.
• Target Population: Adult patients (aged 18 and older) receiving palliative or terminal care across residential hospices, palliative home care, nursing homes, or hospital wards, and their designated primary informal caregivers.
• Administration Modality: Paper-and-pencil self-report questionnaire, digital survey format, or structured interview administered by a neutral, trained interviewer (recommended for frail patients with motor or visual limitations).
• Estimated Completion Time: Approximately 10 to 15 minutes for the Patient Version; 15 to 25 minutes for the Relative Version.
• Item Formats and Scaling:
  • Core Evaluative Items: Measured on a 4-point or 5-point ordinal Likert-type scale ranging from 1 (“Very dissatisfied” / “Completely disagree”) to 4 or 5 (“Very satisfied” / “Completely agree”), with an explicit “Not applicable” / “No opinion” option to prevent forced non-representative answers.
  • Quality Improvement Probes: Complementary semi-structured items allow respondents to indicate whether specific aspects of care required improvement (e.g., dichotomous “Satisfactory as is” vs. “Needs improvement” flags, followed by open-ended text fields for qualitative elaboration).
  • Global Appraisal: Visual analogue or numeric rating scales (0 to 10) evaluating overall quality of care received across the entire terminal trajectory.
• Scoring and Aggregation Procedures:
  • Subscale scores are calculated by computing the mean or sum of the items belonging to each validated dimension, typically standardized to a 0–100 scale to facilitate intuitive clinical interpretation and inter-domain comparison.
  • Higher numerical scores reflect greater perceived quality and satisfaction with end-of-life care delivery.
  • Missing data protocols typically recommend that subscale scores only be calculated if at least $70%$ of the dimension’s items have been answered by the respondent.

Permissions & Fee and Test Year

The Maastricht Satisfaction with Terminal Care Instrument was developed and published in 2004 under the auspices of Maastricht University and the Care and Public Health Research Institute (CAPHRI) in the Netherlands.

Copyright and Usage Policy: The conceptual framework, structural scales, and original Dutch instrument items are protected by institutional copyright held by the developers and Maastricht University. However, the instrument was created to support public healthcare quality improvement and academic palliative medicine research. It is generally made accessible to non-commercial researchers, healthcare institutions, hospices, and non-profit clinical audit teams upon request, provided appropriate scholarly attribution is maintained.

Access and Licensing Inquiries: Healthcare organizations, clinical quality audit committees, or investigative teams seeking to obtain the complete, official Dutch questionnaires, validated translation guidelines, or scoring manuals should contact the primary author, Dr. Ilse M. Proot, or the institutional administration of the Department of Health Services Research at Maastricht University.

References

Below is a curated selection of foundational scholarly literature, psychometric validation studies, and conceptual works related to the Maastricht Satisfaction with Terminal Care Instrument and end-of-life care quality assessment:

• Proot, I. M. (2004). Maastrichts meetinstrument Tevredenheid Terminale Zorg [Maastricht Assessment of Satisfaction with Terminal Care]. Maastricht University, Care and Public Health Research Institute (CAPHRI), Department of Health Care Studies.
• Proot, I. M., Abu-Saad, H. H., Crebolder, H. F. J. M., Goldsteen, M., Luker, K. A., & Widdershoven, G. A. M. (2003). Vulnerability of family caregivers in terminal palliative care at home; balancing between burden and capacity. Scandinavian Journal of Caring Sciences, 17(2), 113–121. https://doi.org/10.1046/j.1471-6712.2003.00220.x
• Donabedian, A. (1988). The quality of care: How can it be assessed? JAMA, 260(12), 1743–1748. https://doi.org/10.1001/jama.1988.03410120089033
• Kristjanson, L. J. (1993). Validity and reliability testing of the FAMCARE Scale: Measuring family satisfaction with advanced cancer care. Social Science & Medicine, 36(5), 693–701. https://doi.org/10.1016/0277-9536(93)90066-b
• Saunders, C. (1988). The evolution of the hospices. Free Associations, 1(13), 7–16.
• Heyland, D. K., Tranmer, J. E., & Kingston General Hospital ICU Research Working Group. (2001). Measuring family satisfaction with care in the intensive care unit: The Canadian researchers’ perspective. Critical Care Medicine, 29(7), 1423–1429. https://doi.org/10.1097/00003246-200107000-00021
• Vissers, K. C., van den Beuken-van Everdingen, M. H., & Jansen, L. (2013). Palliative care in the Netherlands: Current status and future challenges. Annals of Palliative Medicine, 2(3), 116–123. https://doi.org/10.3978/j.issn.2224-5820.2013.06.01

Items of the Scale