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Terminally Ill Cancer Patients' Concordance Between Preferred Life-Sustaining Treatment States in Their Last Six Months of Life and Received Life-Sustaining Treatment States in Their Last Month: An Observational Study
Address correspondence to: Siew Tzuh Tang, DNSc, Chang Gung University, School of Nursing, Department of Nursing, Chang Gung Memorial Hospital at Kaohsiung, and Division of Hematology-Oncology, Chang Gung Memorial Hospital at Linkou, 259 Wen-Hwa 1st Road, Kwei-Shan, Tao-Yuan 333, Taiwan.
The extent to which patients' preferences for end-of-life (EOL) care are honored may be distorted if preferences are measured long before death, a common approach of existing research. We examined the concordance between cancer patients' states of life-sustaining treatments (LSTs) received in their last month and LST preference states assessed longitudinally over their last six months.
Methods
We examined states of preferred and received LSTs (cardiopulmonary resuscitation, intensive care unit care, chest compression, intubation with mechanical ventilation, intravenous nutrition, and nasogastric tube feeding) in 271 cancer patients' last six months by a transition model with hidden Markov modeling (HMM). The extent of concordance was measured by a percentage and a kappa value.
Results
HMM identified four LST preference states: life-sustaining preferring, comfort preferring, uncertain, and nutrition preferring. HMM identified four LST states received in patients' last month: generally received LSTs, LSTs uniformly withheld, selectively received LSTs, and received intravenous nutrition only. LSTs received concurred poorly with patients' preferences estimated right before death (39.5% and kappa value: 0.06 [95% CI: −0.02, 0.13]). Patients in the life-sustaining–preferring, uncertain, and nutrition-preferring states primarily received no LSTs, and patients in three of four states received intravenous nutrition against their preferences. Concordance was strongest for comfort-preferring patients.
Conclusions
Concordance was poor between patients' preferred and received LST states. Interventions are needed to clarify patients' EOL care goals and to facilitate their understanding about LST's ineffectiveness in prolonging life at EOL. Such interventions might increase patients' comfort preference and ensure concordance between their preferred and received EOL care.
Concordance between terminally ill cancer patients' preferred and received care is valued as an essential element of high-quality patient-centered end-of-life (EOL) care.
Escalating healthcare expenditures in cancer decedents’ last year of life: a decade of evidence from a retrospective population-based cohort study in Taiwan.
that prospectively investigated concordance between patients' preferred and received EOL care (including two randomized, advanced care planning clinical trials),
with a substantial minority (11.1%–49.3%) changing their preferences as death approached. These patients' preferences cannot be captured if assessed at baseline only, thus distorting the extent to which patients' EOL care preferences are honored. Furthermore, applications of research findings in busy clinical settings may be complicated and impractical when assessing preferences for multiple LSTs.
Preferences for life-sustaining treatments examined by hidden Markov modeling are mostly stable in terminally ill cancer patients’ last 6 months of life.
thus minimizing the time spent assessing LST preferences and avoiding burdening terminally ill patients with choosing among multiple individual LSTs when they are physically and psychologically frail. Moreover, none of the previous prospective studies
was from Asian countries such as Taiwan where patient autonomy is commonly subordinate to families' power for EOL care under the Confucian doctrine of filial piety.
Therefore, this study was conducted to examine the concordance between terminally ill Taiwanese cancer patients' LST states received in the last month and LST preference states estimated longitudinally during their last six months.
Methods
Design and Sample
Data for this study were from a longitudinal study on the quality of death and dying. The stability of patients' state-specific changes in preferences for cardiopulmonary resuscitation (CPR), intensive care unit (ICU) care, chest compression, intubation with mechanical ventilation, and nutrition support in their last six months has been reported.
Preferences for life-sustaining treatments examined by hidden Markov modeling are mostly stable in terminally ill cancer patients’ last 6 months of life.
Preferences for life-sustaining treatments examined by hidden Markov modeling are mostly stable in terminally ill cancer patients’ last 6 months of life.
Briefly, adult cancer patients were recruited by convenience in 2009–2012 and followed until December 2015. Patients were referred by their oncologist who declared them terminally ill when their disease continued to progress and was unresponsive to curative treatments. Cognitively competent participants were interviewed by trained, experienced oncology nurses approximately once every two weeks during hospitalization or at outpatient clinics, until they declined to participate or died. The study site's institutional review board approved the study (98-0476B). All participants signed a written informed consent.
Preferences for Life-Sustaining Treatments
To assess participants' current preferences for CPR, ICU care, chest compression, intubation with mechanical ventilation, intravenous nutrition, and nasogastric tube feeding when they would someday need each treatment, we used an adapted interview protocol (Table 1),
without informing participants of the likelihood of benefit or risk from each treatment. For each LST, patients were asked whether they 1) wanted, 2) did not want, or 3) were undecided about the treatment. LST preferences were assessed without informing participants of their prognosis (disease curability or estimated survival) because prognostic awareness was under investigation in the original study and published in another article.
Table 1Interview Questions Regarding Preferences for Life-Sustaining Treatments
1.
At the first interview, before participants offered their preferences regarding cardiopulmonary resuscitation (CPR), they were told, “If your heart were to stop beating and your life were in danger, your health care professionals might provide CPR. CPR comprises a combination of electric shocks to the heart, pumping the chest to stimulate the heart, placing a tube through the mouth or nose into the lungs and attaching this tube to a breathing machine to help with breathing, and heart medications given through the veins.” Participants were then asked, “If your life were in danger, would you want to receive CPR?”
2.
For life-sustaining treatments, participants were asked, “If you were dying and
(1)
your heart stopped beating, would you want your chest to be pumped to stimulate the heart to beat?
(2)
If you were unable to breathe on your own, would you want to be intubated and on a breathing machine? In this situation, a tube would be placed through your mouth or nose into your lungs. This tube would be attached to a breathing machine. During that time, you would have to be continuously on the breathing machine and would be unable to talk and might be sedated.
(3)
If you need intensive care, would you like to stay in an intensive care unit (ICU)? An ICU is an isolated care unit that heavily uses health technology to provide intensive care with more nursing staff to closely monitor you. If you receive care in an ICU, you could only have contact with your family at specific visiting times.
(4)
If you cannot eat by yourself, would you be willing to be fed by artificial means, such as feeding through a nasogastric tube or receiving nutritional support by injection?
Data on receipt of the aforesaid six LSTs in patients' last month were retrieved from medical records. For patient participants who had not been hospitalized at the study hospital or did not return there for clinical visits in their last month, LST receipt was obtained from family caregivers during bereavement follow-ups.
Analysis
Baseline characteristics and LST preferences of patients comprising the final sample and those excluded from analysis were compared by chi-square tests. Identification of and changes in distinct LST preference states between consecutive time points were examined by a transition model with hidden Markov modeling (HMM).
In HMM, LST preferences were treated as patterns or sets of treatment preferences (“latent states”) rather than individual treatment preferences. Latent states were estimated by observed response variables (i.e., preferences for the six selected LSTs) to reflect the unobserved (latent) concepts (i.e., LST-preference states). HMM simultaneously examined LST preferences as latent treatment preference states, described dynamic changes in patients' LST preferences in their last six months, and estimated LST transition probabilities.
Data were analyzed using Latent GOLD 5.0 (Belmont, MA).
The first part of HMM modeling assigned patients to a limited number of mutually exclusive LST preference states based on common characteristics that discriminate patients in each state. Choosing the optimal number of states in the model was determined by three factors: 1) examining fit indices with information criteria (ICs), for example, the Akaike information criterion (AIC),
; and 3) clinical meaningfulness of latent-state results. Lower AIC, BIC, and CAIC but higher LL values indicate a better model fit. However, in plots of IC values versus state number, the flattening of IC values between consecutive numbers of states suggests that higher state numbers are not statistically meaningful.
These criteria (i.e., generally lower IC and higher LL values, with more weight on flattening IC values between consecutive numbers of states) were used to determine the optimal number of states. The second part of HMM estimated state-transition probabilities.
Transition probability represented the likelihood that a patient would prefer a specific set of LSTs at time t, given his/her preference for a specific LST set at time t − 1.
States of LSTs received in patients' last month were identified using the same procedures as described previously, except those for estimating state-transition probabilities. Concordance was evaluated by cross-tabulating LST preference states estimated just before death (based on each state's initial and transition probabilities) and LST states received in the last month. Concordance is expressed both as a percentage (received/preferred LSTs) and by a kappa coefficient for chance-corrected agreement.
Concordance (kappa value) was determined as poor (≤0.20), fair (0.21–0.40), moderate (0.41–0.60), substantial (0.61–0.80), or almost perfect (0.81–1.00).
Of 433 eligible terminally ill cancer patients, 380 were enrolled (participation rate = 87.8%) (Supplemental Figure 1). Among the 380 patients enrolled, 317 died by the end of follow-ups and information of LST preferences was available for 303 patients. The final sample included 271 patients with complete information on preferred and received LSTs. These patients' baseline characteristics and LST preferences did not differ significantly from those excluded from analysis except for a few diagnoses (data not shown; available from the corresponding author).
The majority of participants were male (55.0%) (Table 2), with a mean (SD) age of 57.9 (12.7) years, and married (82.6%). The most common cancer sites were pancreas (17.3%), stomach (16.2%), liver (13.7%), lung (11.8%), and head and neck (9.2%). At enrollment, participants had been diagnosed on average 17.2 (SD = 32.3) months ago. After enrollment, participants survived 170.2 days (SD = 214.3; median = 89.0; range = 3–1506) and were assessed on average 5.3 times (SD = 3.5; median = 5.0, range = 1–18; 73.8% had more than two assessments) in their last six months. The following results are based on 1372 assessments, separated by 18.7 days on average (SD = 7.7; median = 16.0; range = 10–67). The last assessment was on average 25.3 days (SD = 25.8; median = 17.0; range = 1–166) before death. For details on initial and final preferences for each LST and LSTs received in the last month, see Table 2.
Table 2Participants' Demographic and Clinical Characteristics, Preferred Life-Sustaining Treatments, and Received Life-Sustaining Treatments (N = 271)
Characteristic
n
%
Characteristic
n
%
Gender
Educational level
Male
149
55.0
≤Elementary school
106
39.7
Female
122
45.0
Junior high school
51
19.1
Age (yrs)
Senior high school
81
30.3
Mean ± SD
57.92 ± 12.68
>Senior high school
29
10.9
Marital status
Cancer site
Single
12
4.4
Pancreas
47
17.3
Married
223
82.6
Stomach
44
16.2
Divorced/separated
18
6.7
Liver
37
13.7
Widowed
17
6.3
Lung
32
11.8
With chronic disease
Head and neck
25
9.2
Yes
168
62.0
Esophagus
21
7.8
No
103
38.0
Colon-rectum
17
6.3
Metastasis
Breast
12
4.4
Yes
207
76.7
Other
36
13.3
No
63
23.3
Postdiagnosis survival (months)
Mean ± SD
17.16 ± 32.26
Characteristic
n
%
Characteristic
n
%
Initial preferences for life-sustaining treatments
CPR
ICU care
Yes
28
10.3
Yes
40
14.8
No
167
61.6
No
150
55.6
Unsure
76
28.1
Unsure
80
29.6
Chest compression
Intubation
Yes
33
12.2
Yes
24
8.9
No
169
62.4
No
180
66.4
Unsure
69
25.5
Unsure
67
24.7
Tube feeding
Intravenous nutrition
Yes
66
24.4
Yes
126
46.5
No
130
48.0
No
87
32.1
Unsure
75
27.7
Unsure
58
21.4
Final preferences for life-sustaining treatments
CPR
ICU care
Yes
25
9.3
Yes
36
13.4
No
180
66.7
No
162
60.2
Unsure
65
24.1
Unsure
71
26.4
Chest compression
Intubation
Yes
26
9.6
Yes
21
7.8
No
184
68.1
No
190
70.4
Unsure
60
22.2
Unsure
59
21.9
Tube feeding
Intravenous nutrition
Yes
73
27.0
Yes
135
50.0
No
133
49.3
No
88
32.6
Unsure
64
23.7
Unsure
47
17.4
Life-sustaining treatments received in the last month of life (N = 271)
CPR
11
4.1
ICU care
19
7.0
Chest compression
9
3.3
Intubation
20
7.4
Tube feeding
80
29.5
Intravenous nutrition
90
33.2
Hospice care (N = 270)
182
67.4
Place of death
Hospital
145
53.5
Home
126
46.5
CPR = cardiopulmonary resuscitation; ICU = intensive care unit.
Hidden Markov Modeling of Preferred and Received LST States and Transitions Between LST Preference States in Participants' Last Six Months
Evaluation of model fit indexes (Supplemental Table 1), the AIC, BIC, and CAIC plots (Supplemental Figure 2), and clinical meaningfulness supports selection of a four-state solution for LST preferences as optimal and parsimonious. These four states' emission probabilities and sizes (state probabilities) are given in Table 3. The states were labeled life-sustaining preferring, comfort preferring, uncertain, and nutrition preferring (principally by intravenous nutrition support). When LST preferences were initially assessed, the most prevalent state was comfort preferring (40.9%) (Table 3), followed by uncertain (26.6%) and nutrition preferring (22.6%) states. About one-tenth of participants preferred all LSTs (9.9%).
Table 3Emission Probabilities and Initial Sizes of the Four Life-Sustaining Treatment-Preference States (N = 303)
Preferences for Life-Sustaining Treatments
State
Life-Sustaining Preferring
Comfort Preferring
Uncertain
Nutrition Preferring
Initial Size (%)
9.9
40.9
26.6
22.6
Want treatment
Cardiopulmonary resuscitation
0.944
0.000
0.010
0.011
Intensive care unit care
0.978
0.002
0.011
0.137
Chest compression
0.935
0.003
0.013
0.034
Intubation
0.860
0.000
0.000
0.009
Nasogastric tube feeding
0.963
0.016
0.084
0.425
Intravenous nutrition support
1.000
0.274
0.269
0.766
Don't want treatment
Cardiopulmonary resuscitation
0.056
0.998
0.055
0.852
Intensive care unit care
0.007
0.998
0.000
0.685
Chest compression
0.058
0.998
0.028
0.938
Intubation
0.133
1.000
0.068
0.976
Nasogastric tube feeding
0.030
0.983
0.037
0.318
Intravenous nutrition support
0.000
0.720
0.002
0.099
Undecided
Cardiopulmonary resuscitation
0.000
0.002
0.935
0.138
Intensive care unit care
0.015
0.000
0.989
0.179
Chest compression
0.007
0.000
0.959
0.029
Intubation
0.008
0.000
0.932
0.016
Nasogastric tube feeding
0.007
0.001
0.880
0.257
Intravenous nutrition support
0.000
0.006
0.729
0.136
Emission probability represents the observed probability that each patient would want, not want, or be undecided about each LST in each identified state. Bold-italicized values indicate that participants in the life-sustaining preference, comfort preference, and uncertain states had uniformly high probabilities of wanting, rejecting, and being undecided about, respectively, each treatment. Bold values indicate the emission probabilities for participants in each state wanting, rejecting, and being undecided about each treatment.
LST preferences were highly stable over patients' last six months as evident by remaining in their original LST preference state (the diagonal in Table 4, 92.8%–97.7%) rather than changing to other preference states. Therefore, the prevalence (state probability) fluctuated within a narrow range over the last six months (Fig. 1). As time passed and death approached, the proportion of patients in the comfort- and nutrition-preferring states increased, whereas the proportion of those in the uncertain state tended to decrease (the only state to do so) from about 27% to 21%. Over time, the nutrition-preferring state became the second-most prevalent LST preference state, only surpassed by the comfort-preferring state.
Table 4Transition Probabilities of Life-Sustaining Treatment States From Time [t − 1] to Time [t] (N = 303)
Time [t]
Time t [t − 1]
State
Life-Sustaining Preferring
Comfort Preferring
Uncertain
Nutrition Preferring
Life-sustaining preferring
0.949
0.000
0.009
0.010
Comfort preferring
0.000
0.977
0.022
0.023
Uncertain
0.028
0.011
0.928
0.029
Nutrition preferring
0.023
0.012
0.042
0.938
Bold indicates the highest transition probability between different times.
Fig. 1Probability (size) for each LST preference state estimated at different times after enrollment in patients' last six months; life-sustaining treatment (LST) preferences: State 1: LST preference; State 2: comfort preference; State 3: uncertain; State 4: nutrition preference.
HMM identified four states of LSTs received by cancer patients in their last month (Supplemental Table 2 and Supplemental Figure 2). These four states were identified as generally received LSTs (State 1), LSTs uniformly withheld (State 2), selectively received LSTs (State 3), and received intravenous nutrition only (State 4) (Table 5). Patients in State 1 predominantly received aggressive LSTs, for example, CPR, chest compression, and intubation with mechanical ventilation support (probabilities: 75.6%–97.4%), and had an approximately equal chance of receiving or not receiving nutrition support by intravenous and nasogastric tube feeding. By contrast, State 3 patients selectively received ICU care, intubation with mechanical ventilation support, and nasogastric tube feeding, whereas other LSTs were withheld. The most prevalent received LST state was receiving intravenous nutrition only (State 4, size: 50.5%), followed by LSTs uniformly withheld (State 2, size: 41.7%). Less than 5% of participants received mostly or selected aggressive LSTs before they died.
Table 5Probabilities and Sizes of the Four Received Life-Sustaining Treatment States (N = 274)
Life-Sustaining Treatments Received
State
Generally Received LSTs
LSTs Uniformly Withheld
Selectively Received LSTs
Received Only IV Nutrition
Size (%)
3.4
41.7
4.4
50.5
Treatment received
Cardiopulmonary resuscitation
0.974
0.002
0.001
0.012
Intensive care unit care
0.325
0.004
0.932
0.031
Chest compression
0.970
0.000
0.001
0.000
Intubation
0.756
0.022
0.862
0.000
Nasogastric tube feeding
0.439
0.282
0.780
0.255
Intravenous nutrition support
0.441
0.032
0.295
0.576
Treatment not received
Cardiopulmonary resuscitation
0.027
0.998
0.999
0.988
Intensive care unit care
0.675
0.996
0.068
0.969
Chest compression
0.031
1.000
0.999
1.000
Intubation
0.244
0.978
0.138
1.000
Nasogastric tube feeding
0.561
0.718
0.220
0.745
Intravenous nutrition support
0.559
0.968
0.705
0.424
LST = life-sustaining treatment.
Probability represents the observed probability that each patient did or did not receive each life-sustaining treatment in each identified state. Bold indicates the probabilities for participants in each state receiving or not receiving each treatment.
Concordance Between Preferred and Received LST States at EOL
The concordance between patients' estimated preferred and received LST states was 39.5% (Table 6, bolded values). For patients in the uncertain state, preferred and received LST states were evaluated as concordant when they received some LSTs in the last month because they neither accepted nor rejected all LSTs estimated in the last assessment. LST preferences were least honored for patients in the life-sustaining–preferring state (0%; 0 of 24), followed by the uncertain state (6.9%; four of 58), nutrition-preferring state (38.4%; 28 of 73), and comfort-preferring state (64.7%; 75 of 116). Indeed, among patients estimated to be in the life-sustaining-preferring, uncertain, or nutrition-preferring states right before death, approximately one-half to two-thirds received no LSTs in their last month (14, 36, and 40 of 24, 58, and 73 patients, respectively, Table 6). Receiving intravenous nutrition only was the second-most likely LST state received for patients across all LST preference states. Concordance between preferred and received LST states was poor as shown by kappa = 0.06 (95% CI: −0.02, 0.13).
Table 6Concordance Between States of Preferred and Received Life-Sustaining Treatments (N = 271)
Life-sustaining treatments received: State 1: generally received LSTs; State 2: LSTs uniformly withheld; State 3: selectively received LSTs (i.e., received ICU care, intubation with mechanical ventilation, and nasogastric tube feeding with other treatments withheld); State 4: received intravenous nutrition support only.
Preferred and received LST states were evaluated as concordant when some LSTs were received in the last month of life based on patients' failure to accept or reject all LSTs examined.
14
58
Nutrition preferring
2
40
3
28
73
Total
9
165
11
86
271
LST = life-sustaining treatment.
Bold indicates the number of patients whose preferred and received LST states were concordant.
a Life-sustaining treatments received: State 1: generally received LSTs; State 2: LSTs uniformly withheld; State 3: selectively received LSTs (i.e., received ICU care, intubation with mechanical ventilation, and nasogastric tube feeding with other treatments withheld); State 4: received intravenous nutrition support only.
b Preferred and received LST states were evaluated as concordant when some LSTs were received in the last month of life based on patients' failure to accept or reject all LSTs examined.
Terminally ill Taiwanese cancer patients' preferred and received LST states did not agree beyond chance (only 39.5%), with poor concordance (kappa value: 0.06 [95% CI: −0.02, 0.13]). Discordance between preferred and received LST states was most likely when no LST was provided to patients who uniformly preferred/were unsure about LSTs or preferred nutrition support but rejected other LSTs in their last month. The second major discordance between preferred and received LST states came from participants in the life-sustaining-preferring, comfort-preferring, and uncertain states receiving intravenous nutrition at EOL.
Our findings concur with reports that concordance was infrequent between terminally or seriously ill patients' preferences for EOL care and EOL care received, whether measured by individual LSTs
of decedents with congestive heart failure/end-stage renal disease and elderly decedents, respectively. EOL care goals were successfully attained for 54.2% of elderly patients,
Our observed concordance between preferred and received LST states is at the lowest end of evidence, likely stemming from cultural differences in respecting patient autonomy.
By contrast, in a Confucian doctrine–influenced society such as Taiwan, where family power is strongly exercised in medical care decision making, including EOL care,
A family-oriented Confucian approach to advance directives in EOL decision making for incompetent elderly patients.
in: Fun R.P. Family-Oriented Informed Consent: East Asian and American Perspectives. Springer International Publishing,
Basel, Switzerland2015: 257-270
Taiwanese families have the authority to make medical decisions on behalf of terminally ill relatives even when they are physically capable or consciously competent.
Congruence of knowledge, experiences and preferences for disclosure of diagnosis and prognosis between terminally-ill cancer patients and their family caregivers in Taiwan.
Congruence of knowledge, experiences and preferences for disclosure of diagnosis and prognosis between terminally-ill cancer patients and their family caregivers in Taiwan.
A decade of changes in family caregivers' preferences for life-sustaining treatments for terminally ill cancer patients at end of life in the context of a family-oriented society.
and projecting their own preferences to shape patients' EOL care (by overtreating or undertreating, as discussed in the following sections).
Our findings of discordance between preferred and received LST states concur with reports that such discrepancies often tend toward patients receiving less aggressive care than they prefer.
The large proportion of participants preferring or being undecided about all/some LSTs (59.1%; Table 3) may have resulted from lack of accurate prognostic awareness,
Associations between accurate prognostic understanding and EOLcare preferences and its correlates among Taiwanese terminally ill cancer patients surveyed in 2011-2012.
However, no patients in the life-sustaining-preferring state received their preferred treatments, and one-half to two-thirds of patients in the life-sustaining-preferring, uncertain, and nutrition-preferring states received no LST before death. These observations, that is, our participants received less aggressive care than they were willing to undergo, probably reflect Taiwan's success in diffusing hospice philosophy to limit futile LSTs. The number of Taiwanese hospice programs increased substantially over the past decade.
Health Promotion Administration. 2015 Health Promotion Administration Annual Report. pp. 109. Health Promotion Administration, Ministry of Health and Welfare, R.O.C. Taipei, Taiwan. Accessed on July 28, 2017.
Clinicians became more familiar with hospice philosophy and better appreciated the futility of providing LSTs to reverse the natural course of the dying process. Taiwanese clinicians usually endorse the family's power in decision making, communicating the costs and benefits of LSTs to them, and obtaining their consent to limit LSTs, not only when a patient's death is imminent, and he/she cannot make EOL care decisions, but also when patients prefer or are uncertain about receiving LSTs. Besides, the government-run National Health Insurance, the only payer of health care services in Taiwan, advocates avoiding futile LSTs to counteract increasingly aggressive EOL care in Taiwan.
Therefore, terminally ill cancer patients' preferences for aggressive LSTs may not be honored to benefit both patients and society at large.
Preferences of patients in the comfort-preferring state were most likely to be violated by receiving intravenous nutrition before they died. This treatment was also the LST most likely to be provided to participants in the life-sustaining-preferring and uncertain states right before death. Given the Confucian doctrine of filial duty
Taiwanese families feel obliged to provide food and nutrition to keep a parent (patient) “alive,” not only to stave off their loved one's physical deterioration but also to provide humanistic EOL care by not abandoning terminally ill patients to die miserably. In Taiwanese culture, a person who dies hungry is believed to become a “starving soul” or “hungry ghost/spirit” in hell. Therefore, even when patients clearly and uniformly rejected LSTs and families recognized that LSTs could cause unbearable suffering for patients in the life-sustaining-preferring and uncertain states, Taiwanese families might elect to forgo LSTs to avoid needlessly protracting the dying process but still insist on providing intravenous nutrition till the patient's death.
A decade of changes in family caregivers' preferences for life-sustaining treatments for terminally ill cancer patients at end of life in the context of a family-oriented society.
The strengths of our study include evaluating the concordance between preferred and received LST states by longitudinally assessing LST preferences over each patient's last six months and using advanced statistics to explore a parsimonious number of preferred and received LST states rather than examining multiple individual LSTs. Health care professionals can efficiently differentiate among patients with different LST preferences by using a maximum of two sequential questions (Supplemental Table 3) to routinely assess their LST preferences, thus facilitating earlier, timelier, and individualized discussions about LST preferences at EOL.
However, our sample's representation of the target population and the generalizability of our findings may have been compromised by convenience sampling from a single medical center. Generalization of our findings may also have been limited by a remarkable proportion of patients withdrawing or being excluded from analysis. Our findings from Taiwan need to be replicated for terminally ill cancer patients in other countries where cultural, societal, and health care characteristics may substantially differ. Our investigation into preferred and received LST states was limited to the six LSTs assessed, and our participants were not given an in-depth risk-benefit analysis for each LST. Furthermore, “undecided” was treated as a valid response with the “wanted” and “not wanted” responses. Indecision indicates patients' ambivalence about LSTs in decision making and categorizing the large proportion of “undecided” responses as “wanting” the treatment inflates the preference rate.
On the other hand, excluding “undecided” responses would prevent understanding the needs of patients in the uncertain state and the EOL care they received, limiting opportunities to improve their EOL care quality. However, the appropriateness of our approach to determining preferred-received LST state concordance for terminally ill cancer patients who are uncertain about their LST preferences warrants further validation. Furthermore, we could not capture any changes in LST preferences between the last assessment and the patient's death to evaluate the concordance between preferred and received LST states. We also recognize the limitation inherent in not exploring terminally ill cancer patients' concerns about their LST preferences and barriers to not prominently shifting toward preferring less aggressive LSTs or reducing uncertainty in LST preferences even when death approached. Qualitative research is suggested to understand these issues in depth. Finally, we did not explore factors predisposing patients to have their LST preference state honored, including family caregivers' attitudes and preferences toward LSTs for their relative, warranting further investigation.
Conclusion and Clinical Implications
In conclusion, LSTs received by terminally ill Taiwanese cancer patients in their last month concurred poorly with their preferences, resulting in receiving less aggressive care than they preferred and receiving intravenous nutrition than they did not prefer. Honoring patients' unrealistic expectations
of using LSTs to combat forthcoming death may cause more harm than benefits. Patients in the life-sustaining-preferring or uncertain states may need interventions to facilitate understanding of prognosis, clarify their EOL care goals, and realize the ineffectiveness of LSTs in prolonging life at EOL. Exploring and understanding the physical and psychological burden of receiving intravenous nutrition against terminally ill cancer patients' preferences is highly desirable to facilitate patient-family discussions about EOL care and to deliver personalized EOL care.
With appropriate interventions tailored to the unique needs of terminally ill cancer patients at each mismatched preferred and received LST state identified in this study, value-based EOL care may be provided to achieve a good death consistent with patients' wishes
while avoiding potentially futile aggressive EOL care.
Disclosures and Acknowledgments
This study was funded by National Health Research Institutes (NHRI-EX107-10704PI) and Ministry of Science and Technology (MOST 104-2314-B-182-027-MY3) and Chang Gung Memorial Hospital (BMRP888).
All authors declare no financial or other conflict of interest.
No funding sources had any role in designing and conducting the study; collecting, managing, analyzing, and interpreting the data; or preparing, reviewing, or approving the article.
The corresponding author has full access to all study data, analyzed the data with Dr. Fur-Hsing Wen, and takes responsibility for the integrity of the data and accuracy of the data analysis.
Supplemental Figure 2(A) Plots of AIC, BIC, and CAIC values for life-sustaining treatment preferences, information criterion value. (B) Plots of AIC, BIC, and CAIC values for life-sustaining treatments received, information criterion value. AIC = Akaike information criterion; BIC = Bayesian information criterion; CAIC = consistent AIC.
Escalating healthcare expenditures in cancer decedents’ last year of life: a decade of evidence from a retrospective population-based cohort study in Taiwan.
Preferences for life-sustaining treatments examined by hidden Markov modeling are mostly stable in terminally ill cancer patients’ last 6 months of life.
A family-oriented Confucian approach to advance directives in EOL decision making for incompetent elderly patients.
in: Fun R.P. Family-Oriented Informed Consent: East Asian and American Perspectives. Springer International Publishing,
Basel, Switzerland2015: 257-270
Congruence of knowledge, experiences and preferences for disclosure of diagnosis and prognosis between terminally-ill cancer patients and their family caregivers in Taiwan.
A decade of changes in family caregivers' preferences for life-sustaining treatments for terminally ill cancer patients at end of life in the context of a family-oriented society.
Associations between accurate prognostic understanding and EOLcare preferences and its correlates among Taiwanese terminally ill cancer patients surveyed in 2011-2012.
Health Promotion Administration. 2015 Health Promotion Administration Annual Report. pp. 109. Health Promotion Administration, Ministry of Health and Welfare, R.O.C. Taipei, Taiwan. Accessed on July 28, 2017.
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