Support Care Cancer DOI 10.1007/s00520-015-2646-4
ORIGINAL ARTICLE
Perceived timeliness of referral to hospice palliative care among bereaved family members in Korea Hyun Jung Jho & Yoon Jung Chang & Hye Young Song & Jin Young Choi & Yeol Kim & Eun Jung Park & Soo Jin Paek & Hee Jae Choi
Received: 19 August 2014 / Accepted: 29 January 2015 # Springer-Verlag Berlin Heidelberg 2015
Abstract Purpose We aimed to explore the perceived timeliness of referral to hospice palliative care unit (HPCU) among bereaved family members in Korea and factors associated therewith. Methods Cross-sectional questionnaire survey was performed for bereaved family members of patients who utilized 40 designated HPCUs across Korea. The questionnaire assessed whether admission to the HPCU was “too late” or “appropriate” and the Good Death Inventory (GDI). Results A total of 383 questionnaires were analyzed. Of participants, 25.8 % replied that admission to HPCU was too late. Patients with hepatobiliary cancer, poor performance status, abnormal consciousness level, and unawareness of terminal status were significantly related with the too late perception. Family members with younger age and being a child of the patient were more frequently noted in the too late group. Ten out of 18 GDI scores were significantly lower in the too late group. Multiple logistic regression analysis revealed patients’ unawareness of terminal status, shorter stay in the HPCU,
H. J. Jho Palliative Care Clinic, Hospital, National Cancer Center, Goyang, Republic of Korea H. J. Jho : Y. J. Chang : Y. Kim : H. J. Choi Family Medicine Clinic, Hospital, National Cancer Center, Goyang, Republic of Korea H. J. Jho : Y. J. Chang (*) : H. Y. Song : J. Y. Choi : Y. Kim : E. J. Park : S. J. Paek Hospice Palliative Care Branch, National Cancer Control Institute, National Cancer Center, 323 Ilsan-ro, Ilsandong-gu, Goyang-si, Gyeonggido 410769, Republic of Korea e-mail: [email protected] H. J. Jho : Y. J. Chang : H. Y. Song : J. Y. Choi : Y. Kim : E. J. Park : S. J. Paek : H. J. Choi Division of Cancer Management Policy, National Cancer Control Institute, National Cancer Center, Goyang, Republic of Korea
younger age of bereaved family, and lower scores for two GDI items (staying in a favored place, living without concerning death or disease) were significantly associated with the too late group. Conclusions To promote timely HPCU utilization and better quality of end of life care, patients need to be informed of the terminal status and their preference should be respected. Keywords Hospice . Palliative care . Referral . Appropriateness
Introduction Hospice palliative care (HPC) aims to improve the quality of life of patients with incurable disease and their family members by providing physical, psychosocial, and spiritual care [1]. Providing palliative care at earlier stages of illness and earlier integration of palliative care have been reported to be beneficial in regard to better quality of life and receiving less aggressive treatment at the end of a patient’s life [2]. Unfortunately, patients are often referred to HPC at a very late stage in their illness. According to previous studies conducted in different countries, the median duration of survival after HPC enrollment ranges from 3 to 8 weeks, and 9 to 17 % of patients die within 1 week after HPC enrollment [3–8]. Barriers to referral to HPC include a number of issues related with patients, their families, physicians, and health care systems [4, 9]. For example, patients and their family members may delay transfer to HPC due to negative thoughts about HPC or wishes to continue anticancer treatment [4, 9]. As well, physicians may delay introducing HPC to patients because of difficulties with prognostication [10, 11], reluctance to deliver a terminal diagnosis [9], and lack of knowledge on HPC [12]. Lastly, complicated admission criteria [9] and lack
Support Care Cancer
of availability of HPC services may also hinder patients from utilizing HPC. In addition to a short stay under HPC, bereaved family members often feel that the timing of referral to HPC is too late. According to surveys conducted among bereaved family members in previous studies, about 11 to 49 % of bereaved families feel their deceased relative was referred to HPC service Btoo late^ [4, 10, 13, 14]. Interestingly, the perception of a Blate referral^ is reportedly not always linked with shorter length of survival while under HPC. Kapo et al. found that the duration of stay under HPC was significantly shorter when family members felt their relative had been referred to HPC too late, rather than Bappropriate^ [13]. Meanwhile, other studies reported that the association between perceived timeliness of referral and duration length of stay under HPC was only marginal [4, 10]. Since 2005, the Korean government has promoted HPC by providing subsidies to designated inpatient HPC units (HPCUs) that meet standards set by the Ministry of Health and Welfare for human resource requirements and necessary facilities. As a result of this initiative, the number of designated HPCUs increased to 54 across South Korea in 2014. Nevertheless, it is estimated that only 12 % of terminal cancer patients utilize these HPC facilities [15]. Moreover, a previous study found that the timing of referral to these HPCUs to be relatively late, with a median duration of survival after enrollment in HPC of only 18 days [16]. However, the perception and related factors for the transition to HPC have not been explored much in Korean context. Since family members of terminal cancer patients play an important role in decision making on end-of-life care [17–19], we aimed to explore the perceived timeliness of referral to a HPCU among bereaved family members and factors associated therewith in Korea.
Methods Study design and participants This study was performed as a part of a national initiative to evaluate the quality of HPC provided by the Korean Ministry of Health and Welfare. We conducted a nationwide cross-sectional survey of bereaved family members of patients who were enrolled and passed away at 40 designated HPCUs across Korea. This survey was performed from June to November 2010. Data on the patients and their families were collected from the Korean Terminal Cancer Information System (KTCPIS), a web-based information gathering system (eVelos System; Velos, Inc., Fremont, CA). Korea’s Ministry of Health and Welfare has required designated HPCUs to register patient and family data in the KTCPIS since 2009 to generate national statistics for use in policy development. The KTCPIS is explained to patients and their family members at the time of
enrollment in a designated HPCU, and personal information is only archived in the KTCPIS for those who give consent. The KTCPIS has been described previously [16]. The inclusion criteria for participation in the survey of the present study were as follows: (a) patients and their families agreed to register their personal information with the KTCPIS, (b) patient died between 2 to 6 months before the survey, (c) the patient was admitted to a designated HPCU for at least 72 h, and (d) the bereaved family member was aged 18 years or older. The exclusion criteria were as follows: (a) the patient was transferred to facilities out of the HPCU, (b) the patient had no family members, or (c) the bereaved family member refused to participate in the survey. Family members who were eligible for the survey were telephoned and instructed on the purpose of the survey. For those who agreed to participate, a questionnaire and consent form were sent by mail along with a return envelope. A gift worth 2000 KRW (about 2 USD) was provided as a reward for their participation. This study was approved by the Institutional Review Board of the National Cancer Center (IRB no. NCCNCS-10-342). Data acquisition and analysis Questionnaire The questionnaire administered to the bereaved family members comprised a question on the timeliness of HPC referral, the Korean version of the Good Death Inventory (GDI), and additional questions. Timeliness of HPC referral was evaluated with the question, BIn your opinion, was the timing of HPCU admission appropriate?^ with possible answers of (1) too early, (2) appropriate, and (3) too late. The GDI was developed by Miyashita et al. [20], and the Korean version of GDI was translated and validated in 2009 [21]. The GDI comprises 18 items that measure comprehensive end-of-life care outcomes in relation to structures and processes of care delivery, physical comfort, relationships, dignity, and psycho-existential domains, using a seven-point Likert scale. A higher score is interpreted as better end-of-life care outcome. The total scores for quality of life were calculated as a sum of the scores for core items 1 to 10. The GDI showed sufficient concurrent validity with the Care Evaluation Scale, overall care satisfaction, and patient’s quality end of life [20, 21]. From the KTCPIS, data on the patients’ sex, age, cancer type, health insurance type, performance status, average pain score, mental status, awareness of terminal condition, date of admission to the HPCU, date of discharge from the HPCU, and route of admission to the HPCU were extracted. Additionally, the sex, age, relationship to the patient, telephone number, and address of the bereaved family member were collected from the KTCPIS. Date of cancer diagnosis was obtained
Support Care Cancer
from the Korea National Cancer Registry Database, and the date of death was retrieved from Korea National Statistics Office.
Statistical analysis Characteristics of the patient and their family members were summarized using descriptive statistics. When comparing groups according to their answers on the timeliness of referral, the group that responded Btoo early^ was excluded from analysis because of the small number. Characteristics of patient, family members, and GDI scores of the too late group and appropriate group were compared using the chi-squared test for the categorical variables and Student’s t test for the continuous variables. The durations from cancer diagnosis to death, cancer diagnosis to HPCU enrollment and HPCU enrollment to death were compared between two groups of too late and appropriate using Wilcoxon rank sum test as these data were not normally distributed. Factors identified as significantly different between the two groups that responded either appropriate or too late were analyzed with multiple logistic regression in a stepwise fashion, adjusting for sex and age. p values of less than 0.05 were considered statistically significant. Bonferroni correction was applied to adjust the results of multiple comparisons. All statistical analyses were performed using STATA software, version 12.0 (Stata Corp, College Station, TX). Fig. 1 Flow of collecting questionnaires from bereaved family members
Results Figure 1 depicts the flow of the survey and subsequent analyses. A total of 5312 terminal cancer patients were enrolled at 40 designated HPCUs across Korea between at January 1, 2010, and October 5, 2010, among whom personal information was available for 4139 cases. After applying inclusion criteria and exclusion criteria, questionnaires were sent to 1866 bereaved family members and 573 questionnaires were collected (response rate of 30.7 %). Among these, 190 cases were excluded due to lack of cancer diagnosis date, incomplete responses and responses that referral timing was too early. Finally, 383 questionnaires were available for analysis.
General characteristics of participants There was no significant difference in general characteristics between who returned the questionnaires and who did not, except that the age of patient (69.2±12.5 vs. 66.2±13.0, p
ORIGINAL ARTICLE
Perceived timeliness of referral to hospice palliative care among bereaved family members in Korea Hyun Jung Jho & Yoon Jung Chang & Hye Young Song & Jin Young Choi & Yeol Kim & Eun Jung Park & Soo Jin Paek & Hee Jae Choi
Received: 19 August 2014 / Accepted: 29 January 2015 # Springer-Verlag Berlin Heidelberg 2015
Abstract Purpose We aimed to explore the perceived timeliness of referral to hospice palliative care unit (HPCU) among bereaved family members in Korea and factors associated therewith. Methods Cross-sectional questionnaire survey was performed for bereaved family members of patients who utilized 40 designated HPCUs across Korea. The questionnaire assessed whether admission to the HPCU was “too late” or “appropriate” and the Good Death Inventory (GDI). Results A total of 383 questionnaires were analyzed. Of participants, 25.8 % replied that admission to HPCU was too late. Patients with hepatobiliary cancer, poor performance status, abnormal consciousness level, and unawareness of terminal status were significantly related with the too late perception. Family members with younger age and being a child of the patient were more frequently noted in the too late group. Ten out of 18 GDI scores were significantly lower in the too late group. Multiple logistic regression analysis revealed patients’ unawareness of terminal status, shorter stay in the HPCU,
H. J. Jho Palliative Care Clinic, Hospital, National Cancer Center, Goyang, Republic of Korea H. J. Jho : Y. J. Chang : Y. Kim : H. J. Choi Family Medicine Clinic, Hospital, National Cancer Center, Goyang, Republic of Korea H. J. Jho : Y. J. Chang (*) : H. Y. Song : J. Y. Choi : Y. Kim : E. J. Park : S. J. Paek Hospice Palliative Care Branch, National Cancer Control Institute, National Cancer Center, 323 Ilsan-ro, Ilsandong-gu, Goyang-si, Gyeonggido 410769, Republic of Korea e-mail: [email protected] H. J. Jho : Y. J. Chang : H. Y. Song : J. Y. Choi : Y. Kim : E. J. Park : S. J. Paek : H. J. Choi Division of Cancer Management Policy, National Cancer Control Institute, National Cancer Center, Goyang, Republic of Korea
younger age of bereaved family, and lower scores for two GDI items (staying in a favored place, living without concerning death or disease) were significantly associated with the too late group. Conclusions To promote timely HPCU utilization and better quality of end of life care, patients need to be informed of the terminal status and their preference should be respected. Keywords Hospice . Palliative care . Referral . Appropriateness
Introduction Hospice palliative care (HPC) aims to improve the quality of life of patients with incurable disease and their family members by providing physical, psychosocial, and spiritual care [1]. Providing palliative care at earlier stages of illness and earlier integration of palliative care have been reported to be beneficial in regard to better quality of life and receiving less aggressive treatment at the end of a patient’s life [2]. Unfortunately, patients are often referred to HPC at a very late stage in their illness. According to previous studies conducted in different countries, the median duration of survival after HPC enrollment ranges from 3 to 8 weeks, and 9 to 17 % of patients die within 1 week after HPC enrollment [3–8]. Barriers to referral to HPC include a number of issues related with patients, their families, physicians, and health care systems [4, 9]. For example, patients and their family members may delay transfer to HPC due to negative thoughts about HPC or wishes to continue anticancer treatment [4, 9]. As well, physicians may delay introducing HPC to patients because of difficulties with prognostication [10, 11], reluctance to deliver a terminal diagnosis [9], and lack of knowledge on HPC [12]. Lastly, complicated admission criteria [9] and lack
Support Care Cancer
of availability of HPC services may also hinder patients from utilizing HPC. In addition to a short stay under HPC, bereaved family members often feel that the timing of referral to HPC is too late. According to surveys conducted among bereaved family members in previous studies, about 11 to 49 % of bereaved families feel their deceased relative was referred to HPC service Btoo late^ [4, 10, 13, 14]. Interestingly, the perception of a Blate referral^ is reportedly not always linked with shorter length of survival while under HPC. Kapo et al. found that the duration of stay under HPC was significantly shorter when family members felt their relative had been referred to HPC too late, rather than Bappropriate^ [13]. Meanwhile, other studies reported that the association between perceived timeliness of referral and duration length of stay under HPC was only marginal [4, 10]. Since 2005, the Korean government has promoted HPC by providing subsidies to designated inpatient HPC units (HPCUs) that meet standards set by the Ministry of Health and Welfare for human resource requirements and necessary facilities. As a result of this initiative, the number of designated HPCUs increased to 54 across South Korea in 2014. Nevertheless, it is estimated that only 12 % of terminal cancer patients utilize these HPC facilities [15]. Moreover, a previous study found that the timing of referral to these HPCUs to be relatively late, with a median duration of survival after enrollment in HPC of only 18 days [16]. However, the perception and related factors for the transition to HPC have not been explored much in Korean context. Since family members of terminal cancer patients play an important role in decision making on end-of-life care [17–19], we aimed to explore the perceived timeliness of referral to a HPCU among bereaved family members and factors associated therewith in Korea.
Methods Study design and participants This study was performed as a part of a national initiative to evaluate the quality of HPC provided by the Korean Ministry of Health and Welfare. We conducted a nationwide cross-sectional survey of bereaved family members of patients who were enrolled and passed away at 40 designated HPCUs across Korea. This survey was performed from June to November 2010. Data on the patients and their families were collected from the Korean Terminal Cancer Information System (KTCPIS), a web-based information gathering system (eVelos System; Velos, Inc., Fremont, CA). Korea’s Ministry of Health and Welfare has required designated HPCUs to register patient and family data in the KTCPIS since 2009 to generate national statistics for use in policy development. The KTCPIS is explained to patients and their family members at the time of
enrollment in a designated HPCU, and personal information is only archived in the KTCPIS for those who give consent. The KTCPIS has been described previously [16]. The inclusion criteria for participation in the survey of the present study were as follows: (a) patients and their families agreed to register their personal information with the KTCPIS, (b) patient died between 2 to 6 months before the survey, (c) the patient was admitted to a designated HPCU for at least 72 h, and (d) the bereaved family member was aged 18 years or older. The exclusion criteria were as follows: (a) the patient was transferred to facilities out of the HPCU, (b) the patient had no family members, or (c) the bereaved family member refused to participate in the survey. Family members who were eligible for the survey were telephoned and instructed on the purpose of the survey. For those who agreed to participate, a questionnaire and consent form were sent by mail along with a return envelope. A gift worth 2000 KRW (about 2 USD) was provided as a reward for their participation. This study was approved by the Institutional Review Board of the National Cancer Center (IRB no. NCCNCS-10-342). Data acquisition and analysis Questionnaire The questionnaire administered to the bereaved family members comprised a question on the timeliness of HPC referral, the Korean version of the Good Death Inventory (GDI), and additional questions. Timeliness of HPC referral was evaluated with the question, BIn your opinion, was the timing of HPCU admission appropriate?^ with possible answers of (1) too early, (2) appropriate, and (3) too late. The GDI was developed by Miyashita et al. [20], and the Korean version of GDI was translated and validated in 2009 [21]. The GDI comprises 18 items that measure comprehensive end-of-life care outcomes in relation to structures and processes of care delivery, physical comfort, relationships, dignity, and psycho-existential domains, using a seven-point Likert scale. A higher score is interpreted as better end-of-life care outcome. The total scores for quality of life were calculated as a sum of the scores for core items 1 to 10. The GDI showed sufficient concurrent validity with the Care Evaluation Scale, overall care satisfaction, and patient’s quality end of life [20, 21]. From the KTCPIS, data on the patients’ sex, age, cancer type, health insurance type, performance status, average pain score, mental status, awareness of terminal condition, date of admission to the HPCU, date of discharge from the HPCU, and route of admission to the HPCU were extracted. Additionally, the sex, age, relationship to the patient, telephone number, and address of the bereaved family member were collected from the KTCPIS. Date of cancer diagnosis was obtained
Support Care Cancer
from the Korea National Cancer Registry Database, and the date of death was retrieved from Korea National Statistics Office.
Statistical analysis Characteristics of the patient and their family members were summarized using descriptive statistics. When comparing groups according to their answers on the timeliness of referral, the group that responded Btoo early^ was excluded from analysis because of the small number. Characteristics of patient, family members, and GDI scores of the too late group and appropriate group were compared using the chi-squared test for the categorical variables and Student’s t test for the continuous variables. The durations from cancer diagnosis to death, cancer diagnosis to HPCU enrollment and HPCU enrollment to death were compared between two groups of too late and appropriate using Wilcoxon rank sum test as these data were not normally distributed. Factors identified as significantly different between the two groups that responded either appropriate or too late were analyzed with multiple logistic regression in a stepwise fashion, adjusting for sex and age. p values of less than 0.05 were considered statistically significant. Bonferroni correction was applied to adjust the results of multiple comparisons. All statistical analyses were performed using STATA software, version 12.0 (Stata Corp, College Station, TX). Fig. 1 Flow of collecting questionnaires from bereaved family members
Results Figure 1 depicts the flow of the survey and subsequent analyses. A total of 5312 terminal cancer patients were enrolled at 40 designated HPCUs across Korea between at January 1, 2010, and October 5, 2010, among whom personal information was available for 4139 cases. After applying inclusion criteria and exclusion criteria, questionnaires were sent to 1866 bereaved family members and 573 questionnaires were collected (response rate of 30.7 %). Among these, 190 cases were excluded due to lack of cancer diagnosis date, incomplete responses and responses that referral timing was too early. Finally, 383 questionnaires were available for analysis.
General characteristics of participants There was no significant difference in general characteristics between who returned the questionnaires and who did not, except that the age of patient (69.2±12.5 vs. 66.2±13.0, p
