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Original Article| Volume 56, ISSUE 5, P659-666.e2, November 2018

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Using Routinely Collected Data to Ascertain Concordance With Advance Care Planning Preferences

  • Woan Shin Tan
    Correspondence
    Address correspondence to: Woan Shin Tan, MSocSc, Centre for Population Health Sciences, Nanyang Technological University, Clinical Sciences Building, 11 Mandalay Road, 308232, Singapore.
    Affiliations
    Centre for Population Health Sciences, Lee Kong Chian School of Medicine, Nanyang Technological University, Singapore, Singapore

    NTU Institute for Health Technologies (NTU HealthTech), Interdisciplinary Graduate School, Nanyang Technological University, Singapore, Singapore

    Health Services and Outcomes Research Department, National Healthcare Group, Singapore, Singapore
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  • Ram Bajpai
    Affiliations
    Centre for Population Health Sciences, Lee Kong Chian School of Medicine, Nanyang Technological University, Singapore, Singapore
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  • Chan Kee Low
    Affiliations
    Economics Programme, School of Social Sciences, Nanyang Technological University, Singapore, Singapore
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  • Andy Hau Yan Ho
    Affiliations
    Centre for Population Health Sciences, Lee Kong Chian School of Medicine, Nanyang Technological University, Singapore, Singapore

    Psychology Programme, School of Social Sciences, Nanyang Technological University, Singapore, Singapore

    Palliative Care Centre for Excellence in Research and Education, Singapore, Singapore
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  • Josip Car
    Affiliations
    Centre for Population Health Sciences, Lee Kong Chian School of Medicine, Nanyang Technological University, Singapore, Singapore

    Global eHealth Unit, Department of Primary Care and Public Health, School of Public Health, Imperial College London, United Kingdom
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Open ArchivePublished:August 07, 2018DOI:https://doi.org/10.1016/j.jpainsymman.2018.07.017

      Abstract

      Context

      One of the key outcomes of advance care planning is whether patients had received care that was consistent with their expressed goals and preferences.

      Objectives

      The aims of this study were to illustrate the feasibility of using routinely collected health care data that include hospital procedural codes, diagnosis-related codes, health services utilization, and death registry data and to ascertain the level of concordance between care received and the stated goals.

      Methods

      In this retrospective cohort study, medical treatments were ascertained using a combination of hospital procedural codes and diagnosis-related codes. Places of care were obtained by reviewing the sequence of health services used, and the place of death was obtained from the national death registry. To ascertain concordance, medical treatment, places of care, and place of death were compared against the individual's preferences.

      Results

      The sample includes 1731 decedents (aged 21 years and above) who completed their advance care planning documentation as part of a national program. Ninety-eight percent who wished for comfort measures met their preferences. Sixty-five percent of individuals who wished to be cared for at home received care at home. Nearly 40% of all individuals who opted to die at home achieved their wishes, whereas 76% of those who opted for home or hospital and home or hospice had their preferences fulfilled.

      Conclusion

      Administrative data offer a cost-efficient and powerful method for assessing outcomes for a large population-based national program. However, this approach is still at an early stage of development and needs to be further validated before it can be used at scale.

      Key Words

      Introduction

      One of the main objectives of advance care planning (ACP) is to allow patients to maintain autonomy in relation to current and future health care decisions. In 2011, a national advance care planning program, called “Living Matters,” was launched in Singapore to meet this specific aim. The program aimed to ensure systematic conduct of end-of-life care discussions, supported by a consistent documentation of preferences. One of the first to be introduced in Asia, “Living Matters” was adapted from the Respecting Choices® program in the Gunderson Health System in Wisconsin, U.S. In the U.S., the program was associated with improvements in patient-surrogate congruence
      • Song M.K.
      • Kirchhoff K.T.
      • Douglas J.
      • Ward S.
      • Hammes B.
      A randomized, controlled trial to improve advance care planning among patients undergoing cardiac surgery.
      and also resulted in a 98% compliance with treatment preferences of 540 decedents.
      • Hammes B.J.
      • Rooney B.L.
      Death and end-of-life planning in one midwestern community.
      Given that the goal of ACP is primarily to “ensure that individuals receive medical care that is consistent with their values, goals, and preferences during serious and chronic illness,”
      • Sudore R.L.
      • Lum H.D.
      • You J.J.
      • et al.
      Defining advance care planning for adults: a consensus definition from a multidisciplinary Delphi panel.
      the paucity of evaluation studies examining whether choices were respected represents a significant gap in current ACP evaluation frameworks. In a systematic review of 55 studies examining the efficacy of ACP,
      • Houben C.H.M.
      • Spruit M.A.
      • Groenen M.T.J.
      • Wouters E.F.M.
      • Janssen D.J.A.
      Efficacy of advance care planning: a systematic review and meta-analysis.
      only three studies measured and reported the level of concordance with treatment preferences.
      • Detering K.
      • Hancock A.D.
      • Reade M.C.
      • Silvester W.
      The impact of advance care planning on end-of-life care in elderly patients: a randomised controlled trial.
      • Kirchhoff K.T.
      • Hammes B.J.
      • Kehl K.A.
      • Briggs L.A.
      • Brown R.L.
      Effect of a disease-specific planning intervention on surrogate understanding of patient goals for future medical treatment.
      • Morrison R.S.
      • Chichin E.
      • Carter J.
      • Burack O.
      • Lantz M.
      • Meier D.E.
      The effect of a social work intervention to enhance advance care planning documentation in the nursing home.
      Few studies have examined the level of concordance with preferences for place of care,
      • Biondo P.D.
      • Lee L.D.
      • Davison S.N.
      • Simon J.E.
      How healthcare systems evaluate their advance care planning initiatives: results from a systematic review.
      which is distinct from the place of death.
      • Agar M.
      • Currow D.C.
      • Shelby-James T.M.
      • Plummer J.
      • Sanderson C.
      • Abernethy A.P.
      Preference for place of care and place of death in palliative care: are these different questions?.
      In the aforementioned studies, the occurrence of treatment procedures at the end of life were ascertained through medical records review and supplemented by surveying attending nurses
      • Morrison R.S.
      • Chichin E.
      • Carter J.
      • Burack O.
      • Lantz M.
      • Meier D.E.
      The effect of a social work intervention to enhance advance care planning documentation in the nursing home.
      or surrogate family caregivers or decision makers.
      • Kirchhoff K.T.
      • Hammes B.J.
      • Kehl K.A.
      • Briggs L.A.
      • Brown R.L.
      Effect of a disease-specific planning intervention on surrogate understanding of patient goals for future medical treatment.
      Other studies examined concordance outcomes associated with do-not-resuscitate orders,
      • Phua J.
      • Kee A.C.
      • Tan A.
      • et al.
      End-of-life care in the general wards of a Singaporean hospital: an Asian perspective.
      advance directives, and end-of-care discussions
      • Wright A.A.
      • Mack J.W.
      • Kritek P.A.
      • et al.
      Influence of patients' preferences and treatment site on cancer patients' end-of-life care.
      have relied on similar methods. However, such data collection approaches could be time consuming and might not be scalable to population-based evaluations. The literature suggests that studies with large sample sizes have primarily examined concordance with only the place of death.
      • Hurley S.L.
      • Colling C.
      • Bender L.
      • et al.
      Increasing inpatient hospice use versus patient preferences in the USA: are patients able to die in the setting of their choice?.
      • Fromme E.K.
      • Zive D.
      • Schmidt T.A.
      • Cook J.N.
      • Tolle S.W.
      Association between physician orders for life-sustaining treatment for scope of treatment and in-hospital death in Oregon.
      In a recent publication by Turley et al., the authors advocated for, and demonstrated the utility of, defining end-of-life care events based on medication and procedural codes that were captured routinely as part of electronic medical records documentation.
      • Turley M.
      • Wang S.
      • Meng D.
      • Kanter M.H.
      • Garrido T.
      An information model for automated assessment of concordance between advance care preferences and care delivered near the end of life.
      This approach allowed a systematic assessment of the level of concordance between documented preferences and actualized end-of-life care treatments.
      Since its implementation, the outcomes of “Living Matters” have not been evaluated nationally. Discussions about death and dying are considered taboo with little communication about these preferences between family members. Doctors are also often requested to withhold poor prognosis from patients by their families.
      • Tan J.
      • Chin J.J.
      What doctors say about care of the dying.
      Little research has been conducted in Asian settings regarding the effectiveness of ACP in promoting adherence with individual treatment preferences. To better support the assessment of ACP outcomes at the population level, administrative data collected at the national level were used to compare stated preferences against actualized outcomes.

      Methodology

      Study Design and Population

      The “Living Matters” program involves a coordinated approach to ACP whereby trained nonmedical facilitators, in collaboration with treating physicians, assist patients and their families to reflect on the patient's goals, values, and beliefs and to discuss and document their future choices about health care. Similar to the Respecting Choices® program, the Singaporean program aims to 1) increase awareness about ACP among health care professionals, and the public; 2) recruit and train ACP facilitators to facilitate conversations in health and social care organizations; and 3) establish and strengthen systems to support ACP implementation, including the development of a national ACP IT system.
      • Chung I.
      Advance care planning in an Asian country.
      Different ACP processes and documentation requirements are applicable to adults who are healthy, diagnosed with complex chronic illnesses, or diagnosed with a life-limiting/advanced illness. This study focuses on the last group. We adopted a retrospective cross-sectional design to profile the end-of-life preferences of deceased individuals and to ascertain the extent of concordance between stated preferences and end-of-life care. Individuals who had completed their ACP and died between 2011 and 2015 were included.

      Data Source

      As part of “Living Matters,” a coordinated approach to ACP was adopted, whereby trained facilitators, who may not necessarily be medically trained, support patients and their families to discuss and document their future choices about health care. The preferences were then documented in an ACP form that specifies preferences about cardiopulmonary resuscitation during cardiopulmonary arrest, and preferences about intubation, mechanical ventilation, cardioversion, and transfer to intensive care. The patient was also asked about their preferred place of medical treatment, and care if their medical condition were to deteriorate. Finally, the preferred place of death (nursing home, acute hospital, home, inpatient hospice, no preference) was also documented. The completed form was then uploaded into the national ACP information technology system, and/or the electronic medical records of the individual hospitals.
      We extracted ACP participant profile and preference data from the aforementioned databases. Other data variables were obtained from the Ministry of Health: acute hospital diagnosis, procedural, and service codes were extracted from administrative databases that captured case-mix information from all public-sector hospitals in Singapore; long-term care service usage was extracted from administrative databases that captured information for individuals who received government subsidies for services provided by dialysis centers, day care centers, home care providers, nursing homes, and inpatient hospices; and place of death data were extracted from the national death registry. To safeguard data confidentiality, a project unique identifying number was generated for each National Registration Identify Card number that identifies every Singapore resident, and this was used to link data across data sets.

      Preference Statements

      The ACP document contained information about individual preferences related to the administration of cardiopulmonary resuscitation (CPR), medical intervention (full treatment, limited additional interventions, comfort measures), place of care, and place of death. Full treatment includes intubation, mechanical ventilation, and cardioversion, and transfer to intensive care units if indicated. Limited additional interventions include oral or intravenous medications as well as noninvasive ventilation support but excludes endotracheal intubation or long-term life support measures or intensive care unit admissions. Comfort measures include reasonable measures made to offer food and fluids. Medications, oxygen, and other measures may be used as needed for comfort.
      For the preferred place of medical treatment or care, individuals could opt for home, hospice, nursing home, hospital, as well as a trial of treatment in their own home or nursing home or hospice before considering transfer to hospital or hospice. The documentation also allowed individuals to indicate “no preferences” or “others.” To reflect the sequential or conditional options inherent in the preferences for place of care, we mapped out 10 permutations (Supplementary Material 2).
      For place of death in the event of deterioration, the options include home, the hospital, hospice, or nursing home. They could also state two or more alternatives, such as home or hospital, and home or nursing home or hospital. A “no preference” option was also available.

      End-of-Life Care Events

      To identify incidences of tracheostomy, intubation, mechanical ventilation, noninvasive ventilation, electrical cardioversions, and CPR, we used a combination of the International Classification of Diseases, Ninth Revision, Clinical Modification codes, diagnosis-related group codes, and the Australian Classification of Health Interventions, Version 6. First, two researchers with training in health services research created the initial list of codes, based on a combination of a literature review
      • Barnato A.E.
      • Farrell M.H.
      • Chang C.-C.H.
      • Lave J.R.
      • Roberts M.S.
      • Angus D.C.
      Development and validation of hospital “End-of-Life” treatment intensity measures.
      and checking through the relevant code books. Second, three physician-researchers independently reviewed the list of procedural and diagnosis-related codes for final inclusion. The time frames used for collating the information were 14, 30, and 90 days before death. (Refer to Supplementary Material for the codes used.) Although the reliability of the coding has not been explored or ascertained, we expect the diagnosis-related group codes to be reliably coded since this is monitored by the Ministry of Health, as part of the annual review of health care utilization and performance.
      • Haseltine W.A.
      Affordable excellence: the Singapore healthcare story.
      To locate the places where care was received, we identified admissions to inpatient acute care facilities, community hospitals, nursing home, and inpatient hospices. Records of utilization of home care (medical, nursing, palliative care) and day care services were used to determine whether the patient was cared for at home. In addition, if we could identify no formal care service usage, we assumed that the patient was cared for at home. Given that an individual could access and consume different types of services at various sites before death, we first ascertained the sequence of health service usage, based on the date of admission or attendance and date of discharge, whichever is applicable for the service type, in the 14, 30, and 90 days before death.
      To identify the actual place of death, the official classification of “residential home,” “nursing home and clinic,” “public and charitable institutions” (aged care facilities), “licensed sick receiving house” (inpatient hospices), and “others,” were extracted.

      Concordance Mapping

      The four ACP preferences (CPR, full treatment, limited additional intervention, comfort measures) were mapped onto eight end-of-life care procedures or treatments (Fig. 1), which were each coded dichotomously. For each patient, concordance occurred when recorded end-of-life care treatments matched the documented preferences of full treatment, limited additional interventions, and comfort care. For example, if the patient had opted for comfort care but had received tracheostomy and/or mechanical ventilation and intubation and/or noninvasive ventilation or CPR, this would have been identified and coded as a nonconcordant case. For each patient, the date difference between the procedure administration and date of death was also computed, to ascertain concordance at 14, 30, and 90 days before death. Our mapping algorithm is, however, limited because a lack of concordance for individuals who opted for full treatment or limited additional intervention could reflect low clinical need, rather than discordance.
      Figure thumbnail gr1
      Fig. 1Preferences mapped to end-of-life care treatments. CPR = cardiopulmonary resuscitation; ICU = intensive care unit; MV = mechanical ventilation.
      To compute the level of agreement for place of care, where preferences could be for a single site, or be conditional for everyone, we mapped the actual care transitions to the preferred place of care, as indicated by the 10 identified possible permutations. Concordance is achieved when the preceding-succeeding relationships were met. For example, the location(s) of care would be considered concordant with the preference to receive “a trial of treatment in their homes before considering transfer to a hospital,” if the care transition reflected that the patient had received medical, nursing, or palliative care at home, before being admitted to an acute hospital. For the place of death, concordance was determined by comparing the place of death category with the stated preference. For any preferences that included two or more options, we have considered agreement using a summative approach. For instance, there is concordance with the preference “home or hospital” if the patient had either died at home or in an acute hospital. Data on individuals who had stated “unsure,” “no preference,” or “depends on the situation for place of medical treatment or place of death” were not considered in the computation of the level of agreement.
      All data analyses were carried out using Stata Version 12 (StataCorp LP, College Station, TX).
      StataCorp
      Stata Statistical Software: Release 12.

      Results

      Patient Demographics and Stated Preferences

      The demographics of the 1731 decedents are summarized in Table 1. More than half of the sample was aged 75 years and above. Females account for half of the sample, and individuals of Chinese ethnicity were overrepresented in this sample, compared with the national average (83% vs. 77%).
      Department of Statistics
      Census of Population 2010 Statistical Release 1: Demographic characteristics, education, language and religion.
      In terms of preferences, more than 90% opted for “no CPR during cardiac arrest and is not breathing or has no pulse.” Only 44 of 1731 patients opted for full treatment, with the remaining stating a preference for limited additional interventions or comfort measures. Approximately 46% would prefer to be cared for at home or to have a trial of care at home, before considering care in the hospital, and 24% outrightly preferred to be care for in the hospital. For the preferred place of death, approximately 40% expressed a distinct preference for dying at home, and about 30% expressed a preference for death in an institutional setting (hospital, nursing home, hospice). While only 5% of the sample had no preferences or were unsure about the place of care, 23% indicated they had no preference or were unsure about the place of death.
      Table 1Demographics and Documented Preferences of Patients (N = 1731)
      VariablesNumber (%)
      Age group (yrs)
       <4530 (1.7)
       45–5475 (4.3)
       55–64181 (1.5)
       65–74306 (17.7)
       ≥751139 (65.8)
      Gender
       Male902 (52.1)
      Ethnic group
       Chinese1447 (83.6)
       Malay160 (9.2)
       Indian96 (5.6)
       Others28 (1.6)
      CPR
       Attempt56 (3.2)
       Do not attempt1661 (96.0)
       Unsure14 (0.8)
      Medical treatment
       Full treatment44 (2.5)
       Limited additional intervention1160 (67.0)
       Comfort care514 (29.7)
       Unsure13 (0.8)
      Preferred place of medical treatment
       Home193 (11.1)
       Hospital407 (23.5)
       Hospice122 (7.0)
       Nursing home129 (7.5)
       Trial of treatment at home before transfer to hospital or hospice458 (26.5)
       Trial of treatment before transfer to hospital
      Home142 (8.2)
      Hospice35 (2.0)
      Nursing home159 (9.2)
       Others (no preferences, unsure)86 (5.0)
      Preferred place of death
       Home680 (39.4)
       Hospital214 (12.4)
       Hospice133 (7.7)
       Nursing home120 (6.9)
       Home or hospital46 (2.7)
       Home or hospice12 (0.7)
       Hospital or hospice27 (1.6)
       Hospital or nursing home73 (4.2)
       Hospice or nursing home10 (0.6)
       Other combinations17 (1.0)
       Others (no preferences, unsure)399 (23.0)
      CPR = cardiopulmonary resuscitation.

      Agreement Between Preferences and Actual Outcomes

      Table 2 presents the level of agreement, in terms of medical treatment. The level of concordance for individuals who opted to receive comfort measures was close to 98%. The agreement between preferences for CPR, full treatment, and limited additional treatment and actual treatments was very low, but as clinical need or judgment was not ascertained in this retrospective database study, it might not reflect concordance.
      Table 2Concordance With Medical Treatment, by Time Before Death (N = 1731)
      PreferencesNumberConcordance by Time Before Death (%)
      14 Days30 Days90 Days
      CPR
       Did not prefer1661100.0100.0100.0
      Medical interventions
       Prefer full treatment449.120.531.8
       Prefer limited additional treatment116031.155.979.5
       Prefer comfort measures51499.698.898.1
      CPR = cardiopulmonary resuscitation.
      The level of agreement between the preferred and actual place of treatment and care is reflected in Table 3. Of the 193 (11%) individuals who wished to be cared for at home, 57%–65% received care at home. Among the 458 (26%) patients who wished for a trial at home before admission to the hospital, close to half met their preferences. Approximately 24% (407/1731) of individuals wished to be cared for in the hospital. The percentage of concordance with hospital care ranged from 68% at 14 days before death to 90% at 90 days before death. Among the 244 (14%) patients who opted to only receive care in an inpatient hospice or to have a trial of care in the hospice before transfer to the hospital, approximately one in three patients received preference-concordant care. Close to one in two patients who opted for care in the nursing home or a trial in nursing home before admission to the hospital met their preferences, and the concordance reached 100% if the move occurred toward the time frame of 90 days before death.
      Table 3Place of Care Concordance, by Time Before Death (N = 1731)
      Preferred LocationNumberConcordance by Time Before Death (%)
      14 Days30 Days90 Days
      Home19365%63%57%
      Hospital40768%78%90%
      Hospice12235%35%35%
      Nursing home12958%58%100%
      Trial of treatment at home before transfer to hospital or hospice45856%53%48%
      Trial of treatment before transfer to hospital from
       Home14259%53%49%
       Hospice3537%37%40%
       Nursing home15950%51%100%
      Others (no preference, unsure)86
      From Table 4, we observe that the overall concordance with place of death preferences is 50%. The rate of concordance was lower for individuals who opted for a single location, compared to those who preferred more than one alternative. Nearly 40% (680/1731) of individuals who opted to die at home achieved their wishes, whereas 76% of those who opted for home or hospital and home or hospice had their preferences fulfilled. However, a lower level (45%) of concordance was observed among those who wished to die in the hospice or nursing homes.
      Table 4Place of Death Concordance
      Preferred LocationNumberConcordance
      Single option114748%
       Home68051%
       Hospital21454%
       Hospice13345%
       Nursing home12022%
      Multiple options18557%
       Home or hospital4683%
       Home or hospice1250%
       Hospital or hospice2769%
       Hospital or nursing home7351%
       Hospice or nursing home1045%
      Others416
       Others (relative's home, health care institution, three or more options)17
       No preferences or unsure399
      Total173150%

      Discussion

      We presented administrative data, collected at the national level, to evaluate whether care received by an individual was in agreement with their goals and preferences. One of the strengths of our approach is its declarative nature, where the mapping of preferences to actual care and the determination of concordance are explicitly defined, rendering the process repeatable. Concordance with the goals of care has been recognized as a key ACP outcome measure by an international consensus study
      • Rietjens J.A.C.
      • Sudore R.L.
      • Connolly M.
      • et al.
      Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care.
      ; but the usual methods for ascertaining concordance through medical records review could be costly. When family members or health care professionals were surveyed after bereavement, recall bias might reduce the accuracy and reliability of the outcomes. These methods also do not support outcomes monitoring at the system level. With stronger reliance on electronic medical records, eventually, algorithms can be designed and implemented to determine individual-level concordance.
      We found the level of agreement, in terms of preferences for CPR and comfort measures, to be very high among the deceased population who completed their ACP. The treatment concordance for participants who have opted for full or limited additional treatments was relatively lower. Another study found that the rates of intubation and defibrillation/electrical cardioversion among a sample of 683 inpatient decedents were 10.1% in the last 24 hours of life,
      • Phua J.
      • Kee A.C.
      • Tan A.
      • et al.
      End-of-life care in the general wards of a Singaporean hospital: an Asian perspective.
      which is comparable to the 9.1% who received full treatment (intubation, mechanical ventilation, and cardioversion) in the 14 days before death in our study.
      In terms of the level of agreement with place of care, there were differences depending on the time frame of analysis. Invariably, we introduced more episodes of institutional care as the time frame of analysis moved further away from the time of death. This reduces the concordance with home as one of the preferred place of care, while at the same instance, concordance increases for institutional care. There is no consensus in the literature on the time frame to consider for the computation of concordance with this set of preferences. To the best of our knowledge, no published studies have examined concordance with the preferred place of care.
      Using the location of death recorded in the death certificates, we found that approximately 50% of the sample died at their preferred place of death. The percentage of individuals with a home preference dying at home (51%) is double that of the national share of deaths at home (25%).
      • Immigration and Checkpoints Authority Singapore
      Report on registration of births and deaths 2014.
      Our results on concordance fell within the range of 33% to 67%, reported by studies conducted in Australia,
      • Agar M.
      • Currow D.C.
      • Shelby-James T.M.
      • Plummer J.
      • Sanderson C.
      • Abernethy A.P.
      Preference for place of care and place of death in palliative care: are these different questions?.
      Italy,
      • Beccaro M.
      • Costantini M.
      • Giorgi Rossi P.
      • Miccinesi G.
      • Grimaldi M.
      • Bruzzi P.
      Actual and preferred place of death of cancer patients. Results from the Italian survey of the dying of cancer (ISDOC).
      and the U.S.
      • Fischer S.
      • Min S.-J.
      • Cervantes L.
      • Kutner J.
      Where do you want to spend your last days of life? Low concordance between preferred and actual site of death among hospitalized adults.
      • Bakitas M.
      • Ahles T.A.
      • Skalla K.
      • et al.
      Proxy perspectives regarding end-of-life care for persons with cancer.
      • Tang S.T.
      • McCorkle R.
      Determinants of congruence between the preferred and actual place of death for terminally ill cancer patients.
      Factors influencing concordance with place of death preferences could be multifactorial and often nonmodifiable.
      • Costa V.
      • Earle C.C.
      • Esplen M.J.
      • et al.
      The determinants of home and nursing home death: a systematic review and meta-analysis.
      The concordance rate in our study was lower for individuals who preferred to die in the hospice or nursing homes. This contrasts with the findings by Agar et al., who found 77% and 64% of concordance for palliative care patients who preferred to die in a hospice or aged care facility, respectively. The availability of home care and alternative care facilities within each country or geographical region could have influenced the level of concordance. In Singapore, the projected expansion of home palliative care places, from 5000 in 2014 to 6000 in 2020, could support individuals and families to fulfill the wishes to die at home.

      Speech by Mr Gan Kim Yong, Minister for Health, at Singapore Palliative Care Conference at Singapore Polytechnic Convention Centre, 28 June 2014 [press release]. Singapore 2014.

      Similar efforts to expand the capacity of nursing homes and hospices will likely increase the concordance with the wishes of patients who prefer these facilities as their place of death.

      Speech by Mr Gan Kim Yong, Minister for Health, at Singapore Palliative Care Conference at Singapore Polytechnic Convention Centre, 28 June 2014 [press release]. Singapore 2014.

      Policy and Research Implications

      There is a substantial research gap pertaining to the measurement and assessment of whether preferences are met. We would recommend future work in this area to improve our understanding of the importance of and the meaning placed by health care professionals, patients, and their family members on achieving concordance for each category of preferences. For instance, do they place equal weightage on achieving concordance with medical treatments and place of medical treatment or place of death.
      With the anticipated expansion of the ACP program from the coverage of 10,000

      Speech by Mr Gan Kim Yong, Minister for Health, at the opening of the Asia Pacific Hospice Conference, 27 July 2017 [press release]. Singapore, 27 July 2017.2017.

      to 25,000 Singaporeans from 2017 to 2020,

      Speech by Minister of State for Health, Mr Chee Hong Tat, at the MOH Committee of Supply Debate 2017 [press release]. Singapore: Ministry of Health 2017.

      there needs to be a cost-efficient and reliable method for ascertaining the effects of policy in respecting the wishes of the participants. In this study, we have illustrated that administrative data can support the assessment of population-level concordance with preferences stated in an ACP. This approach can be generalized to other health care systems, using similar coding mechanisms. With the advent of electronic medical records, text-mining techniques could be applied to enable a systematic monitoring of outcomes at the population level. However, this must be accompanied with further validation to ascertain the degree of potential misclassification, and overcoding and undercoding for life-sustaining treatments in the routine coding of data. Additional data including service codes for intravenous medications, antibiotics, and artificially administered nutrition should be included for future studies. In addition, further research is required to support the development of reliable and valid measurement tools, especially in terms of agreement with the preferred place of care.
      • Sudore R.L.
      • Heyland D.K.
      • Lum H.D.
      • et al.
      Outcomes that define successful advance care planning: a Delphi panel consensus.
      In this study, there was a slight overrepresentation of individuals belonging to the Chinese ethnic group compared to its national representation (84% vs. 73%). The difference in ACP adoption rates across ethnic groups should be examined in future studies.

      Study Limitations

      Potential limitations of this study include the use of administrative data to determine the incidence of life-sustaining treatments. The current method, although useful for determining the extent of concordance for comfort treatment, can be limited in determining concordance for individuals who opted for full and limited additional treatments because the use of aggressive treatment needs to be clinically indicated. We were also unable to conduct a systematic assessment of clinical relevancy in this study.
      • Detering K.
      • Hancock A.D.
      • Reade M.C.
      • Silvester W.
      The impact of advance care planning on end-of-life care in elderly patients: a randomised controlled trial.
      • Kirchhoff K.T.
      • Hammes B.J.
      • Kehl K.A.
      • Briggs L.A.
      • Brown R.L.
      Effect of a disease-specific planning intervention on surrogate understanding of patient goals for future medical treatment.
      This approach is still at an early stage of development and needs to be further validated.
      • Luta X.
      • Maessen M.
      • Egger M.
      • Stuck A.E.
      • Goodman D.
      • Clough-Gorr K.M.
      Measuring intensity of end of life care: a systematic review.
      Because we have relied on documented preferences, we were unable to account for shifts in patient preferences that were not documented. Future research could compare the accuracy of relying on administrative database versus other methods of data collection, such as health care professional reports, bereaved family member surveys, and medical records review.

      Conclusions

      Routinely collected data on health care service utilization and place of death can support the assessment of concordance between end-of-life care preferences and actual treatments. Administrative data offer a cost-efficient and powerful method for assessing the outcomes for a large population-based sample, compared to traditional methods, such as medical records review and key informant interviews. Therefore, further research is required to validate this method to move toward a data-driven approach for ACP outcomes monitoring and assessments.

      Disclosures and Acknowledgments

      The authors would like to thank Dr. Raymond Ng, Consultant, Department of Palliative Medicine, Tan Tock Seng Hospital for contributing data that were used in the analysis. The authors would also like to acknowledge Mr. Geronimo Jimenez, NTU; Dr. Sng Ming Keat, NTU, and other colleagues from the Agency for Integrated Care and the Ministry of Health for providing project support.
      Woan Shin Tan was funded by the Singapore National Medical Research Council Research and the Singapore National Healthcare Group.
      This study was funded by Agency for Integrated Care Singapore, which receives public funding from the Ministry of Health of the Singaporean Government. The funder has played no role in the study design and collection, analysis, or interpretation of data.
      The authors declare no conflict of interest with respect to the research, authorship, and/or publication of this article.

      Appendix

      Supplementary Material 1Procedural and Diagnosis-Related Codes to Identify Life-Sustaining Treatments
      ICD-9-CMDescriptionACHIDescriptionDRGDescription
      Cardiopulmonary resuscitation
      99.60Cardiopulmonary resuscitation9205200Cardiopulmonary resuscitation
      99.63Closed chest cardiac massage9205300Closed chest cardiac massage
      9204200Nonmechanical methods of resuscitation
      Mechanical ventilation and intubation
      96.04Insertion of endotracheal tube1388200Management of continuous ventilatory support, ≤24 hoursA06 CVentilation >95 hours W/O catastrophic CC
      96.05Other intubation of respiratory tract1388201Management of continuous ventilatory support, more than 24 hours and less than 96 hoursB42 ANervous system diagnosis W ventilator support W catastrophic CC
      96.7Other continuous invasive mechanical ventilation1388202Management of continuous ventilatory support, 96 hours or moreB42 BNervous system diagnosis W ventilator support W/O catastrophic CC
      96.70Continuous invasive mechanical ventilation of unspecified durationE40 ARespiratory system diagnosis W ventilator support W catastrophic CC
      96.71Continuous invasive mechanical ventilation for less than 96 consecutive hoursE40 BRespiratory system diagnosis W ventilator support W/O catastrophic CC
      96.72Continuous invasive mechanical ventilation for 96 consecutive hours or moreF40 ACirculatory system diagnosis W ventilator support W catastrophic CC
      F40 BCirculatory system diagnosis W ventilator support W/O catastrophic CC
      T40ZInfectious and parasitic diseases W ventilator support
      W01ZVentilation or cranial procedures for multiple significant trauma
      X40ZInjuries, poisoning, and toxic effects of drugs W ventilator support
      Y01ZVentilation for burns and severe full-thickness burns
      Tracheostomy
      31.1Temporary tracheostomyA06 ATracheostomy W ventilation >95 hours W catastrophic CC
      31.21Mediastinal tracheostomyA06 BTrach W Vent >95 hours W/O Cat CC or Trach/Vent >95 hours W Cat CC
      31.29Other permanent tracheostomyA06DTracheostomy W/O catastrophic CC
      Noninvasive ventilation
      93.90Noninvasive mechanical ventilationE41ZRespiratory system diagnosis W noninvasive ventilation
      F43ZCirculatory system diagnosis W noninvasive ventilation
      ICD-9-CM = International Classification of Diseases, Ninth Revision, Clinical Modification; ACHI = Australian Classification of Health Interventions codes; DRG = diagnosis-related group.

      Supplementary Material 2: Place of Medical Treatment Concordance Mapping

      • 1.
        Coding Preferences for Place of Medical Treatment/Care
      The preferences for a single place of medical treatment were first coded from A to E, whereas conditional preferences were indicated by the same letters of the alphabets in accordance to the sequence.
      Tabled 1
      Preferences for Place of CareCode
      HomeA
      HospiceB
      Nursing homeC
      HospitalD
      Trial of treatment in own home before considering transfer to hospitalAD
      Trial of treatment in own home before considering transfer to hospital or hospiceAD, AB
      Trial of treatment in hospice before considering transfer to hospitalBD
      Trial of treatment in nursing home before considering transfer to hospitalCD
      UnsureE
      No preferenceE
      OthersE
      • 2.
        Coding Transitions in Places of Medical Treatment/Care
      Transitions in places of care were established by looking through the service records obtained from the MOH case-mix and subvention database, and intermediate- and long-term care information system. For each of the services used, the date of admission or discharge was compared with the date of death of the individual to ascertain whether the patient had used the service within 14, 30, and 90 days. A sequence of services used within each of these time frames was constructed. The table below illustrates the sequence generated for an individual with a unique identifying number “1234.”
      Tabled 1
      PUINService DescriptionCodeDate of AdmissionDate of DischargeDate of Death14-Day Transition
      1234Home medicalA01/06/201631/01/201731/01/2017A
      1234Home palliative careA01/09/201631/01/201731/01/2017AA
      1234HospitalD15/01/201731/01/201731/01/2017AAD
      • 3.
        Coding of the Match Between Preferences and Transitions in Care
      In the example above, if the individual “1234” had opted for a “trial of care at home before transfer to hospital” (coded as “AD”) as his/her preferred place of care, the level of concordance would have been coded as 1 since the individual indeed transited between care at home and the hospital in the last 14 days before death (coded as “AAD”). However, if the individual “1234” had opted for hospital (coded as “B”) as the preferred place of care, the level of concordance would have been coded as 0 for nonconcordance.
      • 4.
        Deriving Aggregate Level of Concordance
      To obtain the final level of concordance number of individuals for preferred place of medical treatment/care, the number of individuals who received care at their preferred locations was divided by the number of individuals for each category of place of medical treatment/care.

      References

        • Song M.K.
        • Kirchhoff K.T.
        • Douglas J.
        • Ward S.
        • Hammes B.
        A randomized, controlled trial to improve advance care planning among patients undergoing cardiac surgery.
        Med Care. 2005; 43: 1049-1053
        • Hammes B.J.
        • Rooney B.L.
        Death and end-of-life planning in one midwestern community.
        Arch Intern Med. 1998; 158: 383-390
        • Sudore R.L.
        • Lum H.D.
        • You J.J.
        • et al.
        Defining advance care planning for adults: a consensus definition from a multidisciplinary Delphi panel.
        J Pain Symptom Manage. 2017; 53: 821-832.e1
        • Houben C.H.M.
        • Spruit M.A.
        • Groenen M.T.J.
        • Wouters E.F.M.
        • Janssen D.J.A.
        Efficacy of advance care planning: a systematic review and meta-analysis.
        J Am Med Directors Assoc. 2014; 15: 477-489
        • Detering K.
        • Hancock A.D.
        • Reade M.C.
        • Silvester W.
        The impact of advance care planning on end-of-life care in elderly patients: a randomised controlled trial.
        BMJ. 2010; 340
        • Kirchhoff K.T.
        • Hammes B.J.
        • Kehl K.A.
        • Briggs L.A.
        • Brown R.L.
        Effect of a disease-specific planning intervention on surrogate understanding of patient goals for future medical treatment.
        J Am Geriatr Soc. 2010; 58: 1233-1240
        • Morrison R.S.
        • Chichin E.
        • Carter J.
        • Burack O.
        • Lantz M.
        • Meier D.E.
        The effect of a social work intervention to enhance advance care planning documentation in the nursing home.
        J Am Geriatr Soc. 2005; 53: 290-294
        • Biondo P.D.
        • Lee L.D.
        • Davison S.N.
        • Simon J.E.
        How healthcare systems evaluate their advance care planning initiatives: results from a systematic review.
        Palliat Med. 2016; 30: 720-729
        • Agar M.
        • Currow D.C.
        • Shelby-James T.M.
        • Plummer J.
        • Sanderson C.
        • Abernethy A.P.
        Preference for place of care and place of death in palliative care: are these different questions?.
        Palliat Med. 2008; 22: 787-795
        • Phua J.
        • Kee A.C.
        • Tan A.
        • et al.
        End-of-life care in the general wards of a Singaporean hospital: an Asian perspective.
        J Palliat Med. 2011; 14: 1296-1301
        • Wright A.A.
        • Mack J.W.
        • Kritek P.A.
        • et al.
        Influence of patients' preferences and treatment site on cancer patients' end-of-life care.
        Cancer. 2010; 116: 4656-4663
        • Hurley S.L.
        • Colling C.
        • Bender L.
        • et al.
        Increasing inpatient hospice use versus patient preferences in the USA: are patients able to die in the setting of their choice?.
        BMJ Support Palliat Care. 2017; 7: 46-52
        • Fromme E.K.
        • Zive D.
        • Schmidt T.A.
        • Cook J.N.
        • Tolle S.W.
        Association between physician orders for life-sustaining treatment for scope of treatment and in-hospital death in Oregon.
        J Am Geriatr Soc. 2014; 62: 1246-1251
        • Turley M.
        • Wang S.
        • Meng D.
        • Kanter M.H.
        • Garrido T.
        An information model for automated assessment of concordance between advance care preferences and care delivered near the end of life.
        J Am Med Inform Assoc : JAMIA. 2016; 23: e118-e124
        • Tan J.
        • Chin J.J.
        What doctors say about care of the dying.
        Lien Foundation, 2011
        • Chung I.
        Advance care planning in an Asian country.
        in: Thomas K. Lobo B. Detering K. Advance care planning in end of life care. Oxford University Press, U.K.2017
        • Barnato A.E.
        • Farrell M.H.
        • Chang C.-C.H.
        • Lave J.R.
        • Roberts M.S.
        • Angus D.C.
        Development and validation of hospital “End-of-Life” treatment intensity measures.
        Med Care. 2009; 47: 1098-1105
        • Haseltine W.A.
        Affordable excellence: the Singapore healthcare story.
        Brookings Institution Press, 2013 (Available from) (Accessed November 30, 2017)
        • StataCorp
        Stata Statistical Software: Release 12.
        StataCorp LP, College Station, TX2011
        • Department of Statistics
        Census of Population 2010 Statistical Release 1: Demographic characteristics, education, language and religion.
        Industry MoTa, Republic of Singapore2010
        • Rietjens J.A.C.
        • Sudore R.L.
        • Connolly M.
        • et al.
        Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care.
        Lancet Oncol. 2017; 18: e543-e551
        • Immigration and Checkpoints Authority Singapore
        Report on registration of births and deaths 2014.
        deaths Roba, Singapore2015
        • Beccaro M.
        • Costantini M.
        • Giorgi Rossi P.
        • Miccinesi G.
        • Grimaldi M.
        • Bruzzi P.
        Actual and preferred place of death of cancer patients. Results from the Italian survey of the dying of cancer (ISDOC).
        J Epidemiol Community Health. 2006; 60: 412-416
        • Fischer S.
        • Min S.-J.
        • Cervantes L.
        • Kutner J.
        Where do you want to spend your last days of life? Low concordance between preferred and actual site of death among hospitalized adults.
        J Hosp Med. 2013; 8: 178-183
        • Bakitas M.
        • Ahles T.A.
        • Skalla K.
        • et al.
        Proxy perspectives regarding end-of-life care for persons with cancer.
        Cancer. 2008; 112: 1854-1861
        • Tang S.T.
        • McCorkle R.
        Determinants of congruence between the preferred and actual place of death for terminally ill cancer patients.
        J Palliat Care. 2003; 19: 230-237
        • Costa V.
        • Earle C.C.
        • Esplen M.J.
        • et al.
        The determinants of home and nursing home death: a systematic review and meta-analysis.
        BMC Palliat Care. 2016; 15: 8
      1. Speech by Mr Gan Kim Yong, Minister for Health, at Singapore Palliative Care Conference at Singapore Polytechnic Convention Centre, 28 June 2014 [press release]. Singapore 2014.

      2. Speech by Mr Gan Kim Yong, Minister for Health, at the opening of the Asia Pacific Hospice Conference, 27 July 2017 [press release]. Singapore, 27 July 2017.2017.

      3. Speech by Minister of State for Health, Mr Chee Hong Tat, at the MOH Committee of Supply Debate 2017 [press release]. Singapore: Ministry of Health 2017.

        • Sudore R.L.
        • Heyland D.K.
        • Lum H.D.
        • et al.
        Outcomes that define successful advance care planning: a Delphi panel consensus.
        J Pain Symptom Manage. 2017;
        • Department of Statistics
        Population trends 2016.
        2016 (Available from) (Accessed November 30, 2017)
        • Luta X.
        • Maessen M.
        • Egger M.
        • Stuck A.E.
        • Goodman D.
        • Clough-Gorr K.M.
        Measuring intensity of end of life care: a systematic review.
        PLoS one. 2015; 10: e0123764