Accepted Manuscript Trajectories of the Multidimensional Dying Experience for Terminally Ill Cancer Patients Siew Tzuh Tang, DNSc Li Ni Liu, PhD Kuan-Chia Lin, PhD Jui-Hung Chung, MS Chia-Hsun Hsieh, MD Wen-Chi Chou, MD Po-Jung Su, MD PII:
S0885-3924(14)00184-5
DOI:
10.1016/j.jpainsymman.2014.01.011
Reference:
JPS 8637
To appear in:
Journal of Pain and Symptom Management
Received Date: 9 October 2013 Revised Date:
24 December 2013
Accepted Date: 8 January 2014
Please cite this article as: Tang ST, Liu LN, Lin K-C, Chung J-H, Hsieh C-H, Chou W-C, Su P-J, Trajectories of the Multidimensional Dying Experience for Terminally Ill Cancer Patients, Journal of Pain and Symptom Management (2014), doi: 10.1016/j.jpainsymman.2014.01.011. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
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Original Article
13-00565R1
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Trajectories of the Multidimensional Dying Experience for Terminally Ill Cancer Patients
Siew Tzuh Tang, DNSc, Li Ni Liu, PhD, Kuan-Chia Lin, PhD, Jui-Hung Chung, MS, Chia-Hsun
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Hsieh, MD, Wen-Chi Chou, MD, and Po-Jung Su, MD
School of Nursing (S.T.T.), Chang Gung University, School of Nursing, Tao-Yuan; Department of Nursing (L.N.L.), Fu Jen Catholic University, Taipei; Department of Health Care and Management (K.-C.L., J.-H.C.), National Taipei University of Nursing and Health Science,
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Taipei; and Division of Hematology-Oncology (C.-H.H., W.-C.C., P.-J.S.), Department of Internal
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Medicine, Chang Gung Memorial Hospital at Linkou, Taipei, Taiwan, Republic of China
Address correspondence to:
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Siew Tzuh Tang, DNSc School of Nursing
Chang Gung University
259 Wen-Hwa 1st Road, Kwei-Shan Tao-Yuan, Taiwan, 333, Republic of China E-mail: [email protected]
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Abstract Context: Studies exploring the trajectories of physical-psychological-social-spiritual dying
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experiences frequently treat changes in these experiences as consistent across different domains and over time.
Objective: This prospective, longitudinal investigation was designed to characterize trajectories
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of the multidimensional dying experience for cancer patients in their last year of life.
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Methods: Trajectories of physical-psychological-social-spiritual/existential dimensions and overall quality of life (QOL) were identified among 313 cancer patients using mixed-effects models to test for linear, quadratic, or cubic changes. Changes in each variable were evaluated
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for clinical significance using minimal important difference.
Results: When patients transitioned to their end of life, symptom distress, functional dependence, anxiety, and depressive symptoms slightly increased, followed by a stable status for
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approximately 4-6 months, and accelerated dramatically to the first clinically significant changes
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at 3-4 months before death. Perceived social support and posttraumatic growth declined gradually to clinically significant changes at 1.0 and 4.0 months before death, respectively. Perceived sense of burden to others increased steadily in the last year of life, with no clinically significant changes identified. Overall QOL deteriorated gradually in the last year but did not reach a clinically significant change until 2.5 months before death.
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Conclusion: All dimensions deteriorated in the last year of life, but with distinctive physical-psychological-social-spiritual/existential and overall QOL trajectories. Recognizing
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trajectory patterns and tipping points of accelerating deterioration in each dimension can help clinicians anticipate times of increased distress, initiate timely, effective interventions to relieve
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patient suffering, and facilitate high-quality end-of-life care tailored to patients’ needs and
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preferences.
Key Words: trajectory, quality of life, symptom distress, functional dependence, psychological distress, sense of burden to others, post-traumatic growth Running title: Trajectories of the Dying Experience
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Accepted for publication: January 8, 2014.
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Introduction Death due to cancer is inevitable for terminally ill cancer patients. Such patients’ dying
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experience is multidimensional,1 with well-documented changes: progressive functional
decline,2-8 symptom acceleration,4-5,7,9-10 and deteriorating quality of life (QOL).2-4,11-15 As the
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disease progresses and death approaches, patients experience more stressful circumstances such as multiple losses, an uncertain future, and anticipatory grief. However, relatively few studies
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investigated trajectories of psychological distress,5,7,9-10,16 social plight,2,4-5,17 and spiritual/existential suffering18 as death approaches.
The few studies exploring trajectories of physical-psychological-social-spiritual dimensions
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of the dying experience were predominantly based on small samples (N=23-88)3-4,11-12,14-15 with a limited time frame (weeks to months)2,4,11-12,19-20 before death. More importantly, changes in
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dying experiences are commonly recognized as consistent across different domains2,14,19 and
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over time,2,11,13,19 requiring validation because evidence supports a “terminal drop”3 in patient well-being. Therefore, the purpose of this prospective, longitudinal study was to characterize trajectories of the physical-psychological-social- spiritual/existential dimensions of the dying experience for a large sample of terminally ill cancer patients in their last year of life. Methods
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Study Design and Sample For this prospective, longitudinal study, a convenience sample of cancer patients was
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recruited from March 2009 to December 2012 from the general medical inpatient units of a medical center in northwest Taiwan and followed until June 30, 2013. Eligible patients were (1)
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diagnosed with a terminal-stage disease continuing to progress and judged by their oncologists as
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unresponsive to current curative cancer treatment, (2) cognitively competent, (3) able to communicate coherently with data collectors, and (4) >20 years old. Procedures
Patients recognized by their primary physicians as terminally ill were referred to data
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collectors who approached patients, explained the study, and invited them to participate. Patients who agreed to participate were interviewed in person while they were hospitalized and
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approximately every 2 weeks thereafter (when they returned for outpatient visits or were
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re-hospitalized) until they declined to participate or died. Patients who did not return to hospital were interviewed by telephone. The research ethics committee of the study site approved the research protocol. All subjects provided written informed consent. Measures
The physical dimension was represented by physical symptom distress and functional dependence. Physical symptom distress was measured by the 13-item Symptom Distress Scale,21 5
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including common symptoms of terminally ill cancer patients, i.e., pain, dyspnea, nausea/vomiting, anorexia, constipation, and insomnia. Scores range from 13 to 65; higher scores
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indicate greater distress. Functional dependence was measured by the 10-item Enforced Social Dependency Scale (ESDS).22 Total ESDS scores range from 10 to 51; higher scores reflect
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greater dependence on help for personal and social functioning.
Psychological distress included anxiety and depressive symptoms, as measured by the
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Hospital Anxiety and Depression Scale (HADS).23 The HADS contains 14 items: 7 measure anxiety (HADS-A) and 7 measure depression (HADS-D). The HADS assesses no physical symptoms, thus avoiding confounders that may overestimate anxiety or depression severity for
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cancer patients who commonly experience multiple physical symptoms. Both the HADS-A and HADS-D have total scores ranging from 0 to 21; higher scores indicate greater
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anxiety/depression.
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The social dimension was characterized by perceived social support as measured by the MOS Social Support Survey (MOS-SSS).24 The MOS-SSS has 19 items to measure tangible, emotional, affectionate, and informational support, and positive social interaction. Total raw scores for each scale are calculated and transformed into a 0-100 scale. Higher scores indicate more perceived social support. The spiritual/existential dimension was assessed by perceived sense of burden to others25 6
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and posttraumatic growth,26 two important themes related to existential suffering at end-of-life (EOL). Existential suffering is caused by the loss of essential aspects of being human:
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autonomy/independence, sense of connection to others, self-identity, and the meaning of
existence.27-28 Sense of burden to others derives from terminally ill patients’ dependence on
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others to provide assistance. Patients who receive care not only benefit from help, but also feel
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that they are creating physical, emotional, social, and economic hardships on their family without opportunities to restore the balance between receiving and giving help, thereby impairing self-identity.29 However, the threat of mortality, life disruption accompanying the dying process, and a sense of one’s worthlessness due to losses and dependence on others can also be
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counterbalanced by dying patients’ perceived posttraumatic growth. Such growth manifests as more appreciation for life, greater sense of personal strength, perception of new possibilities in
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life, new life priorities, deeper intimate relationships, and spiritual growth to re-find the meaning
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of existence.26 Thus, the losses/sense of burden to others experienced in the dying process may be offset or counterbalanced by posttraumatic growth. Sense of burden to others was measured by the 10-item Self-Perceived Burden scale (SPBS).30 SPBS dimensions include the experience of guilt, indebtedness, and helplessness, along with worries/concerns that caregiving may interfere with the caregiver’s life and health. Each item is rated on a 5-point scale from 1 (none of the time) to 5 (all of the time); higher 7
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scores indicate greater sense of burden. Posttraumatic growth was assessed by the 21-item Posttraumatic Growth Inventory
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(PTGI).31 The PTGI comprises a cluster of changes perceived as positive by individuals
following a traumatic/stressful life experience; changes include greater appreciation of life and
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sense of personal strength, recognition of new possibilities for one’s life, changed sense of
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priorities, more intimate/warmer relationships with others, and spiritual development. Items (changes resulting from one’s terminal disease) are rated on a 6-point Likert scale from 0 (I did not experience this change) to 5 (I experienced this change to a very great degree). Overall QOL was measured by the McGill Quality of Life Questionnaire (MQOL).32 The
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original MQOL has 16 items that emphasize psychological, social, and existential well-being to reflect the essential components of terminally ill patients’ QOL. To avoid overlap with physical
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symptom distress, 3 items on distressing symptoms were omitted. Total scores for this modified
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MQOL range from 0 to 130; higher scores indicate better QOL. Statistical Analysis
Data were first descriptively analyzed to check the distributions of all variables. Baseline characteristics and outcome variables of participants who died, withdrew, and were alive at the end of study follow-ups were compared by chi-square tests and multivariate analysis of variance, thus controlling for Type I errors. To identify which groups differed, we conducted Tukey's HSD 8
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post-hoc test for the studentized range statistic. The time proximity to patient death was determined as the period between death and the day of interview and was measured in months
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rather than days because rougher estimates are commonly used by physicians to communicate with patients about life expectancy.
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Mixed-effects models were used to estimate longitudinal trajectories of the
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multidimensional dying experience.33 These models allow the timing and number of repeated assessments to differ across patients to accommodate missing data resulting from disease progression. To delineate the rate and direction of change for each dimension of the dying process across time, we tested for nonlinear individual trajectories across time (i.e., quadratic and
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cubic curves) in those models. A quadratic trajectory reflects a stable condition coupled with an accelerating increase or decrease, whereas a cubic trajectory represents two changes in either the
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magnitude or direction across time points. The best models were selected based on the lowest
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value of the fit statistics, the Akaike information criterion (AIC)34 and/or Bayesian information criterion (BIC).35
To determine the clinical relevance of our findings, we identified the minimal important difference (MID), defined as the smallest change in a patient-reported outcome (score) that patients perceive as beneficial/harmful.36 However, anchor-based MIDs have never been established for cancer patients for the instruments used in this study. Therefore, the MID for each 9
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outcome variable was based on the following recommended distribution-based criteria: the change represents 10% of the scale breadth,37 one-half of the standard deviation,38 or one
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standard error of measurement,39 whichever is highest. This criterion was chosen to increase the likelihood of definite clinically significant changes (Table 1).
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Results
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Sample Characteristics
Of 433 physician-referred eligible patients, 380 were recruited (87.8% participation). Eligible patients declined to participate primarily because they were too weak (n=25, 47.2%) or uninterested (n=22, 41.5%). Characteristics of patients who did and did not participate were not
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compared because access to information about the latter was restricted. Of 380 patients recruited, 40 (12.8%) withdrew from follow-ups primarily due to deteriorated physical condition, and 27
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(7.1%) were still alive at the end of follow-ups. Therefore, the final sample comprised 313
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patients who died during the study period. Characteristics of these three groups did not differ significantly at baseline, except for HADS-D and MOS-SSS scores. Patients who withdrew had significantly lower HADS-D scores (7.81±5.10) than those who died (11.01±5.79) and significantly higher MOS-SSS scores (79.78±17.80) than those still alive (66.43±13.49). The majority of participants was male (n=179, 57.2%), married (n=241, 77.0%), and had < a junior high-school education (n=178, 56.9%). The most common cancer diagnoses were gastric 10
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(n=60, 19.2%), liver (n=54, 17.3%), pancreatic (n=49, 15.7%), head and neck (n=32, 10.2%), and lung (n=29, 9.3%). On average, participants were 58.4±12.9 years old (range=25-95,
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median=58), followed for 134.9±127.3 days (range=3-653, median=90), and completed 6.6±5.9 follow-up interviews (range=1-30, median=4). Since this study explored the multidimensional
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experience of dying in the last year of life, we omitted 104 assessments collected longer than 1
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year from patient death. The following results are based on 1,945 assessments with a mean interval between interviews of 17.9±7.5 days (range=6-82, median=15). The final follow-up interview took place approximately 1 month before death (mean=31.6±44.1, range=1–308, median=17.5).
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Trajectories of the Multidimensional Dying Experience for Terminally Ill Cancer Patients The results of mixed-effects modeling indicated that the trajectories of physical symptom
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distress, functional dependence, anxiety, and depressive symptoms in terminally ill cancer
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patients’ last year of life are best described as cubic patterns by the lowest AIC and/or BIC value (Figure 1A-1B, Appendix 1). At the beginning of their last year of life, participants’ physical symptom distress, functional dependence, anxiety, and depressive symptoms increased slightly; thereafter, their physical and psychological well-being was stable for approximately 4-6 months (Figure 1A-1B) and accelerated dramatically in the last 3-4 months. Over their final year of life, patients’ SDS, ESDS, HADS-A, and HADS-D scores approximately doubled (1.7- to 2.2-fold 11
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increase, Table 2). Clinically significant changes in physical symptom distress, functional dependence, anxiety, and depressive symptoms, as indicated by MIDs, were identified at 3.0 and
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0.5 months; 3.0, 1.5, and 0.5 months; 2.5 months; and 3.5 and 1.0 months before death, respectively (Table 2).
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In participants’ last year, perceived social support and posttraumatic growth declined
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linearly, and perceived sense of burden to others increased steadily (Figure 1C-1D, Appendix 1). Over the same period, patients’ MOS-SSS and PTGI scores decreased 11.11 and 19.55 points, respectively (Table 2), reaching clinical significance at 1 and 4 months before patient death, respectively. No clinically significant changes were found for perceived sense of burden. Finally,
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the most appropriate pattern for the trajectory of overall OQL was quadratic (Figure 1E, Appendix 1). This trajectory was characterized by gradual deterioration in the last year of life.
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(Table 2).
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MQOL scores did not show a clinically significant change until 2.5 months before patient death
Discussion
We identified trajectories of the multidimensional dying experience among Taiwanese terminally ill cancer patients, providing predictions of the direction, rate, and timing of changes for each dimension. All dimensions deteriorated in patients’ last year, but each dimension and overall QOL showed different trajectories. The cubic trajectories for physical and psychological 12
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symptoms showed two turning points. Physical suffering (symptom distress and functional dependence) and psychological distress (anxiety and depressive symptoms) slightly increased
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when patients transited into EOL, followed by a stable status for 4-6 months, similar to a
well-documented functional decline in patients’ last year.6,8 Subsequently, patients’ physical and
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psychological dimensions accelerated dramatically to reach the first clinically significant
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changes at 3-4 months before death. Perceived social support and posttraumatic growth declined, but perceived sense of burden to others increased steadily in patients’ last year. Overall QOL deteriorated gradually in the last year but did not reach a clinically significant change until 2.5 months before death.
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We found that the physical suffering and psychological distress trajectories were best described by cubic patterns. Since previous studies did not analyze trajectories for cubic patterns,
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the reported patterns for deterioration of physical symptom distress,4-5,7,17,20 functional
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dependence,2-8,17,19 and depressive symptoms2,4-5,17 are commonly curvilinear but flat for anxiety.7,9,16,18,40 Notably, the majority of these studies concluded that terminally ill cancer patients’ physical and psychological well-being deteriorates precipitously in the last few months of life—the “terminal drop” phenomenon.3 We identified clinically significant changes by the MID criteria in SDS and ESDS scores (Table 2) at multiple time points (3.0 to 0.5 months before death). Similarly, reported trajectories 13
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of physical symptom distress and functional dependence for cancer patients significantly accelerated 2–34 or 17,18,20 and 2–34,6,19 or 1-22,7-8,17 months before death, respectively. For
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psychological distress, we found the first clinically significant change in depressive symptoms early in patients’ last year (3.5 months before death), whereas anxiety emerged much later (2.5
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months before death) after the forthcoming death became evident. No studies demonstrated a trend in increasing anxiety as death approaches, whereas profound changes in depressive
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symptoms were identified 1,4 2,17 or 32,5 months before death.
As participants’ death approached, they perceived a gradual decline in social support and increased sense of burden to others as their families became exhausted by the substantial
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demands of their dying process. Participants also reported deterioration in personal and interpersonal growth at EOL, contrary to our hypothesis that the dying process would be a path
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for posttraumatic growth. This lack of growth was likely due to cumulative and accelerating
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physical/psychological symptom distress and functional dependence. The majority of relevant EOL studies reported that social-family functioning/well-being remained stable,3-4,13,19 and no longitudinal studies examined perceived posttraumatic growth and sense of burden to others by anchoring them with patient death. However, our results are generally consistent with reports that cancer patients closer to death experience increased existential suffering18 and an accelerating2,17 decline in social support (changing precipitously 1-2 months before death). We 14
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identified clinically significant changes in perceived social support and posttraumatic growth 1 and 4 months before death, respectively, whereas changes in perceived sense of burden to others
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in the last year of life never became clinically significant. Such late or missing clinically
significant changes in patients’ dying experience are congruent with Taiwanese culture that
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highly values filial piety and familism and emphasizes nurturing young, sick, or elderly family
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members.41
Taiwanese terminally ill cancer patients’ overall QOL deteriorated gradually in their dying process. QOL did not clinically significantly decline until 2.5 months before patients’ death, consistent with reports that advanced cancer patients’ QOL deteriorated at a faster rate in the last
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2-33-4 or 1-217,20 months of life. This late change in overall QOL may have been due to patients changing their internal standards, values, and conceptualization of QOL to adjust for their dying
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validation.
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experience, consistent with the response shift theory.42 Nonetheless, this hypothesis warrants
Our results provide a better understanding of trajectories of the multidimensional dying experience among terminally ill cancer patients. Different trajectories of increasing physical and psychological distress, social plight, and spiritual/existential suffering have clinical implications. The cubic trajectories of physical and psychological dimensions identified in this study indicate two important turning points in the dying process. Subtle exacerbations in physical and 15
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psychological distress may serve as a warning sign for patients, families, and healthcare professionals that the patient’s condition is starting to deteriorate and could trigger re-evaluation
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of treatment goals and advance care planning. Such an evaluation may help patients and their families fully utilize the next 4-6 months of stability to optimize QOL. Healthcare professionals
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should be sensitive to subtle declines in patients’ social and existential well-being over the dying
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process to meet their needs. We identified multiple time points for clinically significant increases in physical symptom distress, functional dependence, and depressive symptoms coupled with the precipitous deterioration in QOL in the last few months before death, which may signal to physicians and families that the patient is actively dying. Healthcare providers should direct
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efforts toward adequately relieving physical and psychological symptom distress, facilitating functional independence, improving social relationships/support, and enhancing existential
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well-being to achieve a good death.
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However, we acknowledge important limitations. We used a convenience sample from a medical center, which may have compromised the representativeness of the target population and limited generalizability of the findings. Although our participants and the literature indicated that patients value participation in EOL research and are not stressed or burdened by it,43 a remarkable proportion of patients withdrew from the study. Whether these patients’ dying experience is similar to the findings reported here remains unknown. We averaged group 16
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changes in outcome variables, possibly masking highly variable individual ratings over time.1,44 Such heterogeneity should be characterized to identify vulnerable groups at risk of worse dying
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experiences. Our participants experienced greater psychological distress45-46 and sense of burden to others29 than previously reported, but lower posttraumatic growth.47-48 Whether these
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differences resulted from disease progression, forthcoming death, or cultural differences warrants
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further investigation.
In conclusion, our results indicate that although patients’ physical, psychological, social, and spiritual/existential well-being and overall QOL are expected to deteriorate in the last year of life, such changes and rates of deterioration are neither universally consistent nor steep across all
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dimensions. Distinctive physical, psychological, social, spiritual/existential, and overall QOL trajectories were discernible. Routine careful assessments and recognition of trajectory patterns
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and points of accelerating deterioration in each dimension may help healthcare professionals
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anticipate times of increased physical, psychological, social, and existential distress, intervene to appropriately and promptly relieve patient suffering, and facilitate high-quality EOL care tailored to patients’ needs and preferences.
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Disclosures and Acknowledgments This study was funded by the National Science Council (NSC 98-2314-B-182-052 and
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NSC99-2628-B-182-031-MY2) and the National Health Research Institute (NHRI-EX102-10208PI). No financial or other conflict of interest was involved in this study. None of the funding sources had any role in designing and conducting the study: collecting,
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managing, analyzing, and interpreting the data; or preparing, reviewing, or approving the
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manuscript.
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life: the remarkable universality of half a standard deviation. Med Care 2003; 41: 582-92. 39. Wyrwich K. Minimal important difference thresholds and the stand error of measurement: is there a connection? J Biopharm Stat 2004; 14: 97-110. 40. Kolva E, Rosenfeld B, Pessin H, Breitbart W, Brescia R. Anxiety in terminally ill cancer patients. J Pain Symptom Manage 2011; 42: 691-701. 41. Koh EK, Koh CK. Caring for older adults: the parables in Confucian texts. Nurs Sci Q 23
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2008;21:365-368.
research: a theoretical model. Soc Sci Med 1999; 48:1507-15.
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42. Sprangers MA, Schwartz CE. Integrating response shift into health-related quality of life
43. Gysels MH, Evans C, Higginson IJ. Patient, caregiver, health professional and researcher
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views and experiences of participating in research at the end of life: a critical interpretive
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synthesis of the literature. BMC Med Res Methodol 2012; 12:123.
44. Tsai JS, Wu CH, Chiu TY, Hu WY, Chen CY. Symptom patterns of advanced cancer patients in a palliative care unit. Palliat Med 2006; 20: 617-622. 45. Mystakidou K, Tsilika E, Parpa E, Katsouda E, Galanos A, Vlahos L. Assessment of anxiety
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and depression in advanced cancer patients and their relationship with quality of life. Qual Life Res 2005;14:1825-33.
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46. O'Connor M, White K, Kristjanson LJ, Cousins K, Wilkes L. The prevalence of anxiety and
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depression in palliative care patients with cancer in Western Australia and New South Wales. Med J Aust 2010; 193(5 Suppl):S44-47. 47. Moore AM, Gamblin TC, Geller DA, et al. A prospective study of posttraumatic growth as assessed by self-report and family caregiver in the context of advanced cancer. Psycho-Oncol 2011; 20: 479-487.
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48. Mystakidou K, Tsilika E, Parpa E, Galanos A, Vlahos L. Post-traumatic growth in advanced
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cancer patients receiving palliative care. Br J Health Psychol 2008; 13(Pt 4):633-646.
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Table 1 Criteria for Determining the Minimal Importance Difference for Each Dimension of the Dying Experience Sample scorea Instrument
Range of scores SD
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Mean
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Dimension
10% scale 0.5 SD
SEM
breadth
8.8
5.2b
4.4
3.3
25.9
10.0
4.2
5.0
2.8
7.4
4.8
2.2
2.4
1.7
11.6
6.1
2.2
3.0
1.8
0-100
74.4
15.5
10.0
7.7
4.6
10-50
23.6
9.4
4.1
4.7
2.8
0-105
33.0
24.7
10.6
12.3
4.9
0-130
84.7
25.6
13.0
12.8
7.7
13-65
Functional dependence
ESDS
10-51
Anxiety
HADS-A
0-21
Depressive symptoms
HADS-D
0-21
Social support
MOS-SSS
Sense of burden to others
SPBS
Posttraumatic growth
PTGI
Overall quality of life
MQOL
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SDS
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27.4
Symptom distress
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SD=standard deviation; SEM: standard error of measurement; SDS=Symptom Distress Scale; ESDS=Enforced Social Dependence Scale; HADS-A= Hospital Anxiety and Depression Scale-Anxiety; HADS-D= Hospital Anxiety and Depression Scale-Depression; MOS-SSS= MOS
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Social Support Survey; SPBS=Self-perceived Burden to Others Scale; PTGI= Posttraumatic Growth Index; MQOL=McGill Quality of Life
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Scale Sample scores were derived from all data measured in the last year of life.
b
Bold indicates final values of minimal importance difference for each dimension/instrument.
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a
27
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Table 2
Scale
Initial
MID
(12.0M)
Second
33.6 (0.5M)
13-65
5.2
21.5
26.7 (3.0M)
Functional dependence
10-51
5.0
19.0
24.6 (3.0M)
Anxiety
0-21
2.4
4.9
7.5 (2.5M)
Depressive symptoms
0-21
3.0
7.6
10.7 (3.5M)
Social support
0-100
10.0
82.1
10-50
4.7
21.7
Posttraumatic growth
0-105
12.3
46.1
Overall quality of life
0-130
13. 0
95.0
MID=Minimal importance difference
Last (0.0M)
Points
Fold increase
14.2
1.7
38.6
19.8
2.0
9.6
4.7
2.0
17.0
9.4
2.2
71.0
-11.1
0.9
24.9
3.2
1.2
33.1 (4.0M)
26.5
-19.6
0.6
81.8 (2.5M)
72.6
-22.3
0.8
30.0 (1.5M)
35.4 (0.5M)
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14.6 (1.0M)
71.9 (1.0M)
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others
Third
the last year of life
35.7
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Symptom distress
Sense of burden to
a
First a
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Dimension
range
Overall change in
Score for MID (Time before death, months)
Scale score
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Clinically Significant Changes for Trajectories of the Multidimensional Dying Experience
Scores for MID at various times before death were determined by subtracting the score for MID at each time from the previously assessed
score for MID. If the difference was greater than the scale MID, a clinically significant difference occurred. 28
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ACCEPTED MANUSCRIPT Fig. 1A. Trajectories of the multidimensional dying process—physical dimension
Time before death, months
29
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30
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31
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Fig. 1D. Trajectories of the multidimensional dying process—existential dimension
32
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Fig. 1E. Trajectories of the multidimensional dying process—overall quality of life
33
ACCEPTED MANUSCRIPT Appendix 1 Model Selection for T rajectories of the M ultidimensional Dying Process a Model
Trajectory pattern
Parameter estimate
Linear
Quadratic
Intercept
32.1057
34.3017
Linear
-1.1323***
-2.6918***
Cubic
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Symptom distress 35.7149
-4.5299***
0.1463***
Quadratic
0.5819***
-0.0253***
Fit statistics 13098.8
BIC
13106.2
Functional dependence Intercept
33.4965
Linear
-1.7473***
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Quadratic
13067.5
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AIC
Cubic
13061.4
13074.9
13068.9
36.9638
38.7535
-4.4744***
-7.0804***
0.2619***
0.9025*** -0.0375***
AIC
12866.2
12779.3
12758.8
BIC
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Fit statistics
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Cubic
12873.6
12786.7
12766.2
Intercept
14.9369
16.3149
17.0013
Linear
-0.7955***
-1.8137***
-2.7524***
0.09649***
0.3213***
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Depressive symptoms
Quadratic
-0.0131**
Cubic
Fit statistics AIC
10669.8
10649.8
10645.7
BIC
10677.3
10657.2
10653.1
34
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Anxiety Intercept
8.7041
9.0666
9.6026
Linear
-0.3308
-0.5819**
-1.2629***
0.02347
0.1829**
Quadratic
-0.0092*
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Cubic Fit statistics 10384.1
10380.3
BIC
10391.6
10387.8
Intercept
70.9887
70.6647
Linear
0.9259***
Quadratic Cubic Fit statistics
10383.9
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Social support
10376.5
SC
AIC
71.2218
1.2126**
0.2996
-0.0284
0.2051 -0.0138
14095.1
14099.2
14104.7
BIC
14102.6
14106.7
14112.2
24.8982
25.2706
25.5324
-0.2660*
-0.5496
-0.9202
0.0270
0.1173
Intercept
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Linear
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Sense of burden to others
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AIC
Quadratic Cubic
-0.0053
Fit statistics AIC
13139.9
13144.3
13151.7
BIC
13147.3
13151.7
13159.2
Posttraumatic growth
35
Model
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Parameter estimate
Linear
Quadratic
Cubic
26.5397
24.9732
24.0759
Linear
1.6295***
2.8045***
4.0471**
-0.1116
-0.4120
Quadratic
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Intercept
Cubic
0.0175
Fit statistics 16881.9
16883.0
BIC
16889.4
16890.4
Intercept
75.4221
Linear
2.129***
Quadratic Cubic
72.6360
70.4665
4.1608***
7.0774***
-0.1917**
-0.8901** 0.0406
AIC
17230.9
17227.6
17229.6
BIC
17238.4
17235.1
17237.1
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a
16895.7
p
S0885-3924(14)00184-5
DOI:
10.1016/j.jpainsymman.2014.01.011
Reference:
JPS 8637
To appear in:
Journal of Pain and Symptom Management
Received Date: 9 October 2013 Revised Date:
24 December 2013
Accepted Date: 8 January 2014
Please cite this article as: Tang ST, Liu LN, Lin K-C, Chung J-H, Hsieh C-H, Chou W-C, Su P-J, Trajectories of the Multidimensional Dying Experience for Terminally Ill Cancer Patients, Journal of Pain and Symptom Management (2014), doi: 10.1016/j.jpainsymman.2014.01.011. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
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Original Article
13-00565R1
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Trajectories of the Multidimensional Dying Experience for Terminally Ill Cancer Patients
Siew Tzuh Tang, DNSc, Li Ni Liu, PhD, Kuan-Chia Lin, PhD, Jui-Hung Chung, MS, Chia-Hsun
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Hsieh, MD, Wen-Chi Chou, MD, and Po-Jung Su, MD
School of Nursing (S.T.T.), Chang Gung University, School of Nursing, Tao-Yuan; Department of Nursing (L.N.L.), Fu Jen Catholic University, Taipei; Department of Health Care and Management (K.-C.L., J.-H.C.), National Taipei University of Nursing and Health Science,
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Taipei; and Division of Hematology-Oncology (C.-H.H., W.-C.C., P.-J.S.), Department of Internal
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Medicine, Chang Gung Memorial Hospital at Linkou, Taipei, Taiwan, Republic of China
Address correspondence to:
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Siew Tzuh Tang, DNSc School of Nursing
Chang Gung University
259 Wen-Hwa 1st Road, Kwei-Shan Tao-Yuan, Taiwan, 333, Republic of China E-mail: [email protected]
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Abstract Context: Studies exploring the trajectories of physical-psychological-social-spiritual dying
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experiences frequently treat changes in these experiences as consistent across different domains and over time.
Objective: This prospective, longitudinal investigation was designed to characterize trajectories
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of the multidimensional dying experience for cancer patients in their last year of life.
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Methods: Trajectories of physical-psychological-social-spiritual/existential dimensions and overall quality of life (QOL) were identified among 313 cancer patients using mixed-effects models to test for linear, quadratic, or cubic changes. Changes in each variable were evaluated
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for clinical significance using minimal important difference.
Results: When patients transitioned to their end of life, symptom distress, functional dependence, anxiety, and depressive symptoms slightly increased, followed by a stable status for
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approximately 4-6 months, and accelerated dramatically to the first clinically significant changes
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at 3-4 months before death. Perceived social support and posttraumatic growth declined gradually to clinically significant changes at 1.0 and 4.0 months before death, respectively. Perceived sense of burden to others increased steadily in the last year of life, with no clinically significant changes identified. Overall QOL deteriorated gradually in the last year but did not reach a clinically significant change until 2.5 months before death.
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Conclusion: All dimensions deteriorated in the last year of life, but with distinctive physical-psychological-social-spiritual/existential and overall QOL trajectories. Recognizing
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trajectory patterns and tipping points of accelerating deterioration in each dimension can help clinicians anticipate times of increased distress, initiate timely, effective interventions to relieve
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patient suffering, and facilitate high-quality end-of-life care tailored to patients’ needs and
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preferences.
Key Words: trajectory, quality of life, symptom distress, functional dependence, psychological distress, sense of burden to others, post-traumatic growth Running title: Trajectories of the Dying Experience
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Accepted for publication: January 8, 2014.
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Introduction Death due to cancer is inevitable for terminally ill cancer patients. Such patients’ dying
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experience is multidimensional,1 with well-documented changes: progressive functional
decline,2-8 symptom acceleration,4-5,7,9-10 and deteriorating quality of life (QOL).2-4,11-15 As the
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disease progresses and death approaches, patients experience more stressful circumstances such as multiple losses, an uncertain future, and anticipatory grief. However, relatively few studies
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investigated trajectories of psychological distress,5,7,9-10,16 social plight,2,4-5,17 and spiritual/existential suffering18 as death approaches.
The few studies exploring trajectories of physical-psychological-social-spiritual dimensions
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of the dying experience were predominantly based on small samples (N=23-88)3-4,11-12,14-15 with a limited time frame (weeks to months)2,4,11-12,19-20 before death. More importantly, changes in
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dying experiences are commonly recognized as consistent across different domains2,14,19 and
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over time,2,11,13,19 requiring validation because evidence supports a “terminal drop”3 in patient well-being. Therefore, the purpose of this prospective, longitudinal study was to characterize trajectories of the physical-psychological-social- spiritual/existential dimensions of the dying experience for a large sample of terminally ill cancer patients in their last year of life. Methods
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Study Design and Sample For this prospective, longitudinal study, a convenience sample of cancer patients was
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recruited from March 2009 to December 2012 from the general medical inpatient units of a medical center in northwest Taiwan and followed until June 30, 2013. Eligible patients were (1)
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diagnosed with a terminal-stage disease continuing to progress and judged by their oncologists as
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unresponsive to current curative cancer treatment, (2) cognitively competent, (3) able to communicate coherently with data collectors, and (4) >20 years old. Procedures
Patients recognized by their primary physicians as terminally ill were referred to data
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collectors who approached patients, explained the study, and invited them to participate. Patients who agreed to participate were interviewed in person while they were hospitalized and
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approximately every 2 weeks thereafter (when they returned for outpatient visits or were
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re-hospitalized) until they declined to participate or died. Patients who did not return to hospital were interviewed by telephone. The research ethics committee of the study site approved the research protocol. All subjects provided written informed consent. Measures
The physical dimension was represented by physical symptom distress and functional dependence. Physical symptom distress was measured by the 13-item Symptom Distress Scale,21 5
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including common symptoms of terminally ill cancer patients, i.e., pain, dyspnea, nausea/vomiting, anorexia, constipation, and insomnia. Scores range from 13 to 65; higher scores
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indicate greater distress. Functional dependence was measured by the 10-item Enforced Social Dependency Scale (ESDS).22 Total ESDS scores range from 10 to 51; higher scores reflect
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greater dependence on help for personal and social functioning.
Psychological distress included anxiety and depressive symptoms, as measured by the
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Hospital Anxiety and Depression Scale (HADS).23 The HADS contains 14 items: 7 measure anxiety (HADS-A) and 7 measure depression (HADS-D). The HADS assesses no physical symptoms, thus avoiding confounders that may overestimate anxiety or depression severity for
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cancer patients who commonly experience multiple physical symptoms. Both the HADS-A and HADS-D have total scores ranging from 0 to 21; higher scores indicate greater
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anxiety/depression.
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The social dimension was characterized by perceived social support as measured by the MOS Social Support Survey (MOS-SSS).24 The MOS-SSS has 19 items to measure tangible, emotional, affectionate, and informational support, and positive social interaction. Total raw scores for each scale are calculated and transformed into a 0-100 scale. Higher scores indicate more perceived social support. The spiritual/existential dimension was assessed by perceived sense of burden to others25 6
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and posttraumatic growth,26 two important themes related to existential suffering at end-of-life (EOL). Existential suffering is caused by the loss of essential aspects of being human:
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autonomy/independence, sense of connection to others, self-identity, and the meaning of
existence.27-28 Sense of burden to others derives from terminally ill patients’ dependence on
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others to provide assistance. Patients who receive care not only benefit from help, but also feel
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that they are creating physical, emotional, social, and economic hardships on their family without opportunities to restore the balance between receiving and giving help, thereby impairing self-identity.29 However, the threat of mortality, life disruption accompanying the dying process, and a sense of one’s worthlessness due to losses and dependence on others can also be
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counterbalanced by dying patients’ perceived posttraumatic growth. Such growth manifests as more appreciation for life, greater sense of personal strength, perception of new possibilities in
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life, new life priorities, deeper intimate relationships, and spiritual growth to re-find the meaning
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of existence.26 Thus, the losses/sense of burden to others experienced in the dying process may be offset or counterbalanced by posttraumatic growth. Sense of burden to others was measured by the 10-item Self-Perceived Burden scale (SPBS).30 SPBS dimensions include the experience of guilt, indebtedness, and helplessness, along with worries/concerns that caregiving may interfere with the caregiver’s life and health. Each item is rated on a 5-point scale from 1 (none of the time) to 5 (all of the time); higher 7
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scores indicate greater sense of burden. Posttraumatic growth was assessed by the 21-item Posttraumatic Growth Inventory
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(PTGI).31 The PTGI comprises a cluster of changes perceived as positive by individuals
following a traumatic/stressful life experience; changes include greater appreciation of life and
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sense of personal strength, recognition of new possibilities for one’s life, changed sense of
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priorities, more intimate/warmer relationships with others, and spiritual development. Items (changes resulting from one’s terminal disease) are rated on a 6-point Likert scale from 0 (I did not experience this change) to 5 (I experienced this change to a very great degree). Overall QOL was measured by the McGill Quality of Life Questionnaire (MQOL).32 The
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original MQOL has 16 items that emphasize psychological, social, and existential well-being to reflect the essential components of terminally ill patients’ QOL. To avoid overlap with physical
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symptom distress, 3 items on distressing symptoms were omitted. Total scores for this modified
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MQOL range from 0 to 130; higher scores indicate better QOL. Statistical Analysis
Data were first descriptively analyzed to check the distributions of all variables. Baseline characteristics and outcome variables of participants who died, withdrew, and were alive at the end of study follow-ups were compared by chi-square tests and multivariate analysis of variance, thus controlling for Type I errors. To identify which groups differed, we conducted Tukey's HSD 8
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post-hoc test for the studentized range statistic. The time proximity to patient death was determined as the period between death and the day of interview and was measured in months
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rather than days because rougher estimates are commonly used by physicians to communicate with patients about life expectancy.
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Mixed-effects models were used to estimate longitudinal trajectories of the
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multidimensional dying experience.33 These models allow the timing and number of repeated assessments to differ across patients to accommodate missing data resulting from disease progression. To delineate the rate and direction of change for each dimension of the dying process across time, we tested for nonlinear individual trajectories across time (i.e., quadratic and
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cubic curves) in those models. A quadratic trajectory reflects a stable condition coupled with an accelerating increase or decrease, whereas a cubic trajectory represents two changes in either the
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magnitude or direction across time points. The best models were selected based on the lowest
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value of the fit statistics, the Akaike information criterion (AIC)34 and/or Bayesian information criterion (BIC).35
To determine the clinical relevance of our findings, we identified the minimal important difference (MID), defined as the smallest change in a patient-reported outcome (score) that patients perceive as beneficial/harmful.36 However, anchor-based MIDs have never been established for cancer patients for the instruments used in this study. Therefore, the MID for each 9
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outcome variable was based on the following recommended distribution-based criteria: the change represents 10% of the scale breadth,37 one-half of the standard deviation,38 or one
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standard error of measurement,39 whichever is highest. This criterion was chosen to increase the likelihood of definite clinically significant changes (Table 1).
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Results
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Sample Characteristics
Of 433 physician-referred eligible patients, 380 were recruited (87.8% participation). Eligible patients declined to participate primarily because they were too weak (n=25, 47.2%) or uninterested (n=22, 41.5%). Characteristics of patients who did and did not participate were not
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compared because access to information about the latter was restricted. Of 380 patients recruited, 40 (12.8%) withdrew from follow-ups primarily due to deteriorated physical condition, and 27
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(7.1%) were still alive at the end of follow-ups. Therefore, the final sample comprised 313
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patients who died during the study period. Characteristics of these three groups did not differ significantly at baseline, except for HADS-D and MOS-SSS scores. Patients who withdrew had significantly lower HADS-D scores (7.81±5.10) than those who died (11.01±5.79) and significantly higher MOS-SSS scores (79.78±17.80) than those still alive (66.43±13.49). The majority of participants was male (n=179, 57.2%), married (n=241, 77.0%), and had < a junior high-school education (n=178, 56.9%). The most common cancer diagnoses were gastric 10
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(n=60, 19.2%), liver (n=54, 17.3%), pancreatic (n=49, 15.7%), head and neck (n=32, 10.2%), and lung (n=29, 9.3%). On average, participants were 58.4±12.9 years old (range=25-95,
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median=58), followed for 134.9±127.3 days (range=3-653, median=90), and completed 6.6±5.9 follow-up interviews (range=1-30, median=4). Since this study explored the multidimensional
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experience of dying in the last year of life, we omitted 104 assessments collected longer than 1
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year from patient death. The following results are based on 1,945 assessments with a mean interval between interviews of 17.9±7.5 days (range=6-82, median=15). The final follow-up interview took place approximately 1 month before death (mean=31.6±44.1, range=1–308, median=17.5).
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Trajectories of the Multidimensional Dying Experience for Terminally Ill Cancer Patients The results of mixed-effects modeling indicated that the trajectories of physical symptom
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distress, functional dependence, anxiety, and depressive symptoms in terminally ill cancer
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patients’ last year of life are best described as cubic patterns by the lowest AIC and/or BIC value (Figure 1A-1B, Appendix 1). At the beginning of their last year of life, participants’ physical symptom distress, functional dependence, anxiety, and depressive symptoms increased slightly; thereafter, their physical and psychological well-being was stable for approximately 4-6 months (Figure 1A-1B) and accelerated dramatically in the last 3-4 months. Over their final year of life, patients’ SDS, ESDS, HADS-A, and HADS-D scores approximately doubled (1.7- to 2.2-fold 11
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increase, Table 2). Clinically significant changes in physical symptom distress, functional dependence, anxiety, and depressive symptoms, as indicated by MIDs, were identified at 3.0 and
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0.5 months; 3.0, 1.5, and 0.5 months; 2.5 months; and 3.5 and 1.0 months before death, respectively (Table 2).
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In participants’ last year, perceived social support and posttraumatic growth declined
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linearly, and perceived sense of burden to others increased steadily (Figure 1C-1D, Appendix 1). Over the same period, patients’ MOS-SSS and PTGI scores decreased 11.11 and 19.55 points, respectively (Table 2), reaching clinical significance at 1 and 4 months before patient death, respectively. No clinically significant changes were found for perceived sense of burden. Finally,
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the most appropriate pattern for the trajectory of overall OQL was quadratic (Figure 1E, Appendix 1). This trajectory was characterized by gradual deterioration in the last year of life.
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(Table 2).
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MQOL scores did not show a clinically significant change until 2.5 months before patient death
Discussion
We identified trajectories of the multidimensional dying experience among Taiwanese terminally ill cancer patients, providing predictions of the direction, rate, and timing of changes for each dimension. All dimensions deteriorated in patients’ last year, but each dimension and overall QOL showed different trajectories. The cubic trajectories for physical and psychological 12
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symptoms showed two turning points. Physical suffering (symptom distress and functional dependence) and psychological distress (anxiety and depressive symptoms) slightly increased
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when patients transited into EOL, followed by a stable status for 4-6 months, similar to a
well-documented functional decline in patients’ last year.6,8 Subsequently, patients’ physical and
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psychological dimensions accelerated dramatically to reach the first clinically significant
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changes at 3-4 months before death. Perceived social support and posttraumatic growth declined, but perceived sense of burden to others increased steadily in patients’ last year. Overall QOL deteriorated gradually in the last year but did not reach a clinically significant change until 2.5 months before death.
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We found that the physical suffering and psychological distress trajectories were best described by cubic patterns. Since previous studies did not analyze trajectories for cubic patterns,
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the reported patterns for deterioration of physical symptom distress,4-5,7,17,20 functional
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dependence,2-8,17,19 and depressive symptoms2,4-5,17 are commonly curvilinear but flat for anxiety.7,9,16,18,40 Notably, the majority of these studies concluded that terminally ill cancer patients’ physical and psychological well-being deteriorates precipitously in the last few months of life—the “terminal drop” phenomenon.3 We identified clinically significant changes by the MID criteria in SDS and ESDS scores (Table 2) at multiple time points (3.0 to 0.5 months before death). Similarly, reported trajectories 13
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of physical symptom distress and functional dependence for cancer patients significantly accelerated 2–34 or 17,18,20 and 2–34,6,19 or 1-22,7-8,17 months before death, respectively. For
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psychological distress, we found the first clinically significant change in depressive symptoms early in patients’ last year (3.5 months before death), whereas anxiety emerged much later (2.5
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months before death) after the forthcoming death became evident. No studies demonstrated a trend in increasing anxiety as death approaches, whereas profound changes in depressive
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symptoms were identified 1,4 2,17 or 32,5 months before death.
As participants’ death approached, they perceived a gradual decline in social support and increased sense of burden to others as their families became exhausted by the substantial
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demands of their dying process. Participants also reported deterioration in personal and interpersonal growth at EOL, contrary to our hypothesis that the dying process would be a path
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for posttraumatic growth. This lack of growth was likely due to cumulative and accelerating
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physical/psychological symptom distress and functional dependence. The majority of relevant EOL studies reported that social-family functioning/well-being remained stable,3-4,13,19 and no longitudinal studies examined perceived posttraumatic growth and sense of burden to others by anchoring them with patient death. However, our results are generally consistent with reports that cancer patients closer to death experience increased existential suffering18 and an accelerating2,17 decline in social support (changing precipitously 1-2 months before death). We 14
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identified clinically significant changes in perceived social support and posttraumatic growth 1 and 4 months before death, respectively, whereas changes in perceived sense of burden to others
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in the last year of life never became clinically significant. Such late or missing clinically
significant changes in patients’ dying experience are congruent with Taiwanese culture that
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highly values filial piety and familism and emphasizes nurturing young, sick, or elderly family
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members.41
Taiwanese terminally ill cancer patients’ overall QOL deteriorated gradually in their dying process. QOL did not clinically significantly decline until 2.5 months before patients’ death, consistent with reports that advanced cancer patients’ QOL deteriorated at a faster rate in the last
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2-33-4 or 1-217,20 months of life. This late change in overall QOL may have been due to patients changing their internal standards, values, and conceptualization of QOL to adjust for their dying
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validation.
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experience, consistent with the response shift theory.42 Nonetheless, this hypothesis warrants
Our results provide a better understanding of trajectories of the multidimensional dying experience among terminally ill cancer patients. Different trajectories of increasing physical and psychological distress, social plight, and spiritual/existential suffering have clinical implications. The cubic trajectories of physical and psychological dimensions identified in this study indicate two important turning points in the dying process. Subtle exacerbations in physical and 15
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psychological distress may serve as a warning sign for patients, families, and healthcare professionals that the patient’s condition is starting to deteriorate and could trigger re-evaluation
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of treatment goals and advance care planning. Such an evaluation may help patients and their families fully utilize the next 4-6 months of stability to optimize QOL. Healthcare professionals
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should be sensitive to subtle declines in patients’ social and existential well-being over the dying
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process to meet their needs. We identified multiple time points for clinically significant increases in physical symptom distress, functional dependence, and depressive symptoms coupled with the precipitous deterioration in QOL in the last few months before death, which may signal to physicians and families that the patient is actively dying. Healthcare providers should direct
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efforts toward adequately relieving physical and psychological symptom distress, facilitating functional independence, improving social relationships/support, and enhancing existential
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well-being to achieve a good death.
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However, we acknowledge important limitations. We used a convenience sample from a medical center, which may have compromised the representativeness of the target population and limited generalizability of the findings. Although our participants and the literature indicated that patients value participation in EOL research and are not stressed or burdened by it,43 a remarkable proportion of patients withdrew from the study. Whether these patients’ dying experience is similar to the findings reported here remains unknown. We averaged group 16
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changes in outcome variables, possibly masking highly variable individual ratings over time.1,44 Such heterogeneity should be characterized to identify vulnerable groups at risk of worse dying
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experiences. Our participants experienced greater psychological distress45-46 and sense of burden to others29 than previously reported, but lower posttraumatic growth.47-48 Whether these
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differences resulted from disease progression, forthcoming death, or cultural differences warrants
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further investigation.
In conclusion, our results indicate that although patients’ physical, psychological, social, and spiritual/existential well-being and overall QOL are expected to deteriorate in the last year of life, such changes and rates of deterioration are neither universally consistent nor steep across all
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dimensions. Distinctive physical, psychological, social, spiritual/existential, and overall QOL trajectories were discernible. Routine careful assessments and recognition of trajectory patterns
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and points of accelerating deterioration in each dimension may help healthcare professionals
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anticipate times of increased physical, psychological, social, and existential distress, intervene to appropriately and promptly relieve patient suffering, and facilitate high-quality EOL care tailored to patients’ needs and preferences.
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Disclosures and Acknowledgments This study was funded by the National Science Council (NSC 98-2314-B-182-052 and
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NSC99-2628-B-182-031-MY2) and the National Health Research Institute (NHRI-EX102-10208PI). No financial or other conflict of interest was involved in this study. None of the funding sources had any role in designing and conducting the study: collecting,
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managing, analyzing, and interpreting the data; or preparing, reviewing, or approving the
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manuscript.
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42. Sprangers MA, Schwartz CE. Integrating response shift into health-related quality of life
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Table 1 Criteria for Determining the Minimal Importance Difference for Each Dimension of the Dying Experience Sample scorea Instrument
Range of scores SD
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Mean
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Dimension
10% scale 0.5 SD
SEM
breadth
8.8
5.2b
4.4
3.3
25.9
10.0
4.2
5.0
2.8
7.4
4.8
2.2
2.4
1.7
11.6
6.1
2.2
3.0
1.8
0-100
74.4
15.5
10.0
7.7
4.6
10-50
23.6
9.4
4.1
4.7
2.8
0-105
33.0
24.7
10.6
12.3
4.9
0-130
84.7
25.6
13.0
12.8
7.7
13-65
Functional dependence
ESDS
10-51
Anxiety
HADS-A
0-21
Depressive symptoms
HADS-D
0-21
Social support
MOS-SSS
Sense of burden to others
SPBS
Posttraumatic growth
PTGI
Overall quality of life
MQOL
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SDS
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27.4
Symptom distress
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SD=standard deviation; SEM: standard error of measurement; SDS=Symptom Distress Scale; ESDS=Enforced Social Dependence Scale; HADS-A= Hospital Anxiety and Depression Scale-Anxiety; HADS-D= Hospital Anxiety and Depression Scale-Depression; MOS-SSS= MOS
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Social Support Survey; SPBS=Self-perceived Burden to Others Scale; PTGI= Posttraumatic Growth Index; MQOL=McGill Quality of Life
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Scale Sample scores were derived from all data measured in the last year of life.
b
Bold indicates final values of minimal importance difference for each dimension/instrument.
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a
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Table 2
Scale
Initial
MID
(12.0M)
Second
33.6 (0.5M)
13-65
5.2
21.5
26.7 (3.0M)
Functional dependence
10-51
5.0
19.0
24.6 (3.0M)
Anxiety
0-21
2.4
4.9
7.5 (2.5M)
Depressive symptoms
0-21
3.0
7.6
10.7 (3.5M)
Social support
0-100
10.0
82.1
10-50
4.7
21.7
Posttraumatic growth
0-105
12.3
46.1
Overall quality of life
0-130
13. 0
95.0
MID=Minimal importance difference
Last (0.0M)
Points
Fold increase
14.2
1.7
38.6
19.8
2.0
9.6
4.7
2.0
17.0
9.4
2.2
71.0
-11.1
0.9
24.9
3.2
1.2
33.1 (4.0M)
26.5
-19.6
0.6
81.8 (2.5M)
72.6
-22.3
0.8
30.0 (1.5M)
35.4 (0.5M)
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14.6 (1.0M)
71.9 (1.0M)
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others
Third
the last year of life
35.7
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Symptom distress
Sense of burden to
a
First a
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Dimension
range
Overall change in
Score for MID (Time before death, months)
Scale score
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Clinically Significant Changes for Trajectories of the Multidimensional Dying Experience
Scores for MID at various times before death were determined by subtracting the score for MID at each time from the previously assessed
score for MID. If the difference was greater than the scale MID, a clinically significant difference occurred. 28
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ACCEPTED MANUSCRIPT Fig. 1A. Trajectories of the multidimensional dying process—physical dimension
Time before death, months
29
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30
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31
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Fig. 1D. Trajectories of the multidimensional dying process—existential dimension
32
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Fig. 1E. Trajectories of the multidimensional dying process—overall quality of life
33
ACCEPTED MANUSCRIPT Appendix 1 Model Selection for T rajectories of the M ultidimensional Dying Process a Model
Trajectory pattern
Parameter estimate
Linear
Quadratic
Intercept
32.1057
34.3017
Linear
-1.1323***
-2.6918***
Cubic
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Symptom distress 35.7149
-4.5299***
0.1463***
Quadratic
0.5819***
-0.0253***
Fit statistics 13098.8
BIC
13106.2
Functional dependence Intercept
33.4965
Linear
-1.7473***
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Quadratic
13067.5
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AIC
Cubic
13061.4
13074.9
13068.9
36.9638
38.7535
-4.4744***
-7.0804***
0.2619***
0.9025*** -0.0375***
AIC
12866.2
12779.3
12758.8
BIC
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Fit statistics
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Cubic
12873.6
12786.7
12766.2
Intercept
14.9369
16.3149
17.0013
Linear
-0.7955***
-1.8137***
-2.7524***
0.09649***
0.3213***
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Depressive symptoms
Quadratic
-0.0131**
Cubic
Fit statistics AIC
10669.8
10649.8
10645.7
BIC
10677.3
10657.2
10653.1
34
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Anxiety Intercept
8.7041
9.0666
9.6026
Linear
-0.3308
-0.5819**
-1.2629***
0.02347
0.1829**
Quadratic
-0.0092*
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Cubic Fit statistics 10384.1
10380.3
BIC
10391.6
10387.8
Intercept
70.9887
70.6647
Linear
0.9259***
Quadratic Cubic Fit statistics
10383.9
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Social support
10376.5
SC
AIC
71.2218
1.2126**
0.2996
-0.0284
0.2051 -0.0138
14095.1
14099.2
14104.7
BIC
14102.6
14106.7
14112.2
24.8982
25.2706
25.5324
-0.2660*
-0.5496
-0.9202
0.0270
0.1173
Intercept
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Linear
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Sense of burden to others
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AIC
Quadratic Cubic
-0.0053
Fit statistics AIC
13139.9
13144.3
13151.7
BIC
13147.3
13151.7
13159.2
Posttraumatic growth
35
Model
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Parameter estimate
Linear
Quadratic
Cubic
26.5397
24.9732
24.0759
Linear
1.6295***
2.8045***
4.0471**
-0.1116
-0.4120
Quadratic
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Intercept
Cubic
0.0175
Fit statistics 16881.9
16883.0
BIC
16889.4
16890.4
Intercept
75.4221
Linear
2.129***
Quadratic Cubic
72.6360
70.4665
4.1608***
7.0774***
-0.1917**
-0.8901** 0.0406
AIC
17230.9
17227.6
17229.6
BIC
17238.4
17235.1
17237.1
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a
16895.7
p
