- Email: [email protected]
Advance Directives—The Israeli Experience
Vol. 49 No. 6 June 2015
Journal of Pain and Symptom Management
1097
Original Article
Advance DirectivesdThe Israeli Experience Pesach Shvartzman, MD, Yonatan Reuven, BMedSc, Mordechai Halperin, MD, and Sasson Menahem, MD Department of Family Medicine and Palliative Care Unit (P.S., Y.R., S.M.), Clalit Health Services, Siaal Research Center for Family Medicine and Primary Care, Ben-Gurion University of the Negev, Beer-Sheva; Ministry of Health (M.H.), Jerusalem; and Palliative Clalit Health Services - Southern District Care Unit (P.S., S.M.), Beer-Sheva, Israel
Abstract Context. A major step in end-of-life care was achieved in December 2005 when the Israeli parliament passed the ‘‘Dying Patient Law.’’ The law (x31ex36) allows a competent person, even if he/she is healthy, to leave written instructions known as advance medical directives (AD), in which they explain their wishes in detail with respect to future medical treatment should it be determined that they are an incompetent terminally ill patient, as defined by the provisions of that law. Objectives. The aims were to characterize the group of individuals that completes ADs, characterize the content of recorded ADs, and analyze trends associated with them. Methods. We performed a cross-sectional study of the entire population that signed ADs in Israel from 2007 to September 2010. All computerized AD forms were retrieved from the Ministry of Health’s database. A descriptive analysis of trends, characteristics, and authorized procedures relating to the population of AD signatories was done. Results. There was an increase in the number of ADs signed during the study period (1167 signatories). About 90% of the AD signatories were 65 years of age or older and 95% were healthy at the time they completed the AD. In an end-stage condition, the mean number of procedures declined was 16.6 4.7 of 19. In a non-end-stage condition, the corresponding mean number was 12.7 3.7 of 15. Conclusion. There is a need to increase awareness in the general population of the option to prepare ADs. Family physicians, oncologists, and geriatricians should be more involved in this process. J Pain Symptom Manage 2015;49:1097e1101. Ó 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved. Key Words Advance directives, end-of-life care, suffering, dying patient, Patient Self-Determination Act
Introduction End-of-life care has become a major challenge in modern medicine. Many countries have launched campaigns to improve end-of-life care. The Patient SelfDetermination Act was enacted in the U.S. in 1991 in an effort to provide information on advance directives (ADs) to help patients maintain their autonomy and facilitate the process of independent decision making by individuals before they lose the capacity to make decisions on their own. The law obligated health care institutions to provide patients with information on ADs so that they could complete one and required hospitals to respect the wishes of the terminally ill patient.1 ADs
Address correspondence to: Pesach Shvartzman, MD, Department of Family Medicine and Palliative Care Unit, BenGurion University of the Negev, P.O. Box 653, Beer-Sheva 84105, Israel. E-mail: [email protected] Ó 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
could include a living will, durable power of attorney, do not resuscitate orders, and health care proxy.2,3 The guidelines mandate the health care staff to treat patients according to their expressed will. As a result, ADs could improve the quality of end-of-life care and reduce the emotional distress of the patient, the family, and the caregivers.4 In Israel, a major step in end-of-life care was taken in December 2005 when the Israeli parliament passed the ‘‘Dying Patient Law.’’5 The law (x8) defines a patient as terminally ill if that patient is suffering from an incurable medical problem and has a life expectancy that does not exceed six months even with medical
Accepted for publication: December 20, 2014.
0885-3924/$ - see front matter http://dx.doi.org/10.1016/j.jpainsymman.2014.12.009
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Shvartzman et al.
treatment. A terminally ill patient is defined as an endstage patient if he/she is in a medical condition in which a number of vital systems have failed and life expectancy does not exceed two weeks even with medical treatment. The law provides for practical tools, such as ADs (Appendix, available at jpsmjournal.com), to implement these aims. By signing an AD, the individual specifies the treatment they would be willing to receive in a state of terminal illness. In contrast to other countries, the patient also can specify the procedures they want to have performed even if the medical staff considers them inappropriate. All ADs are approved and stored in a computerized center at the Ministry of Health. Thus, hospitals can contact the center and verify specific ADs. To date, no study has assessed the overall levels of comprehension and implementation of the law or characterized the population that signs ADs. The existence of a central AD database in Israel provides a unique opportunity to characterize the entire population of AD signatories and the content, including procedures authorized in them.
Methods Setting According to the law, the AD form must be filled out under the guidance of a doctor or a nurse, signed by two witnesses, and sent to the Ministry of Health. At the Ministry of Health, the signed AD forms are entered into a computerized database and then stored. The AD is valid for five years, after which it must be renewed.
Study Design Our study was cross-sectional and included the entire population of AD signatories in Israel during the first years of the law implementation from January 2007 until September 2010. All AD computerized forms were retrieved from the AD database at the Ministry of Health, and an anonymous file containing all the AD form data was created. Identifying information such ID numbers, addresses, and phone numbers were deleted from the AD forms and encrypted. The data included sociodemographic variables (age, gender, place of birth) and date of death (if relevant). The study received institutional review board approval from the Meir Medical Center, Kfar Saba, Israel.
Statistical Analyses Data analysis was performed using SPSS, version 19.0 (IBM Corp., Armonk, NY). We performed a descriptive analysis for signatory sociodemographic characteristics, authorized procedures, and trends in
Vol. 49 No. 6 June 2015
the signing of ADs. All data from the ADs, such as age, gender, authorized procedures (name of procedure, authorized/not authorized), consultations with physicians, family members, and setting (clinic, hospital), were included in the analyses. Baseline demographic variables were compared between the population of AD signatories and the total Israeli population aged 65 years and older, as reported in the Israeli Central Bureau of Statistics.6 For continuous variables, mean values, SDs, and t-tests were used, and for categorical variables, the chi-square test was used. P-values below 0.05 were considered statistically significant, with a power of 0.8.
Results Trends in AD Signing Data were collected for 1167 AD signatories between the years 2007 and 2010. Over the course of the years since enactment of the Dying Patient Law, an increase was found in the number of AD signatories. In May 2013, the database included 2662 ADs. Although the increase in ADs between 2007 and 2010 may appear to be large, in reality, the percentage of people in Israel holding ADs is negligible (0.002% e0.03%), overall, and 0.017%e0.3% among individuals aged 65 years and older.
Characteristics of the Population of AD Signatories Table 1 presents the sociodemographic characteristics of the AD signatories. Ninety-nine percent were Jewish and 90% were 65 years of age or older. Among Table 1 Sociodemographic Characteristics of AD Signatories Compared With the General Israeli Population Aged 65 Years and Older AD Population 2007e2010 (n ¼ 1167) Variables Gender Female Age, yrs <50e64 65e74 75e84 85þ Nationality Jewish Arab Other Family status Married Single
%
Total Israeli Population Aged $65 Yrs (n ¼ 763,400)
N
%
N
P-value
68
792
56.6
32,100
<0.0001
9.6 34.1 53.9 27.7 (mis ¼ 12)
201 194 569 292 1055
d 52.3 34.2 13.5
d 399,258 261,083 103,059 763,400
99.5 0.3 0.2 (mis ¼ 250)
912 3 2 917
88.5 8.2 3.2
75,700 62,900 24,800 63,400
<0.0001
60 40 (mis ¼ 69)
661 437 1098
64.9 35
24,922 30,121 55,044
<0.0001
AD ¼ advance directive.
<0.0001
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Advance Directives in Israel
the latter group, 53.9% were 75e84 years old (mean age 78.26 9.5 years, range 30e101). Sixty-eight percent were female, 48% were born in Europe, 41% were Israeli born, 6% were born in Africa or Asia, and 5% were born in America. Sixty percent were married and 40% were single (widowed or divorced), 61% lived in their own home, 39% in sheltered homes, 63.5% in cities, and 26.8% in a kibbutz (rural community settlement), with 9.7% living in other places, for example, Arab village, community settlement. Ninety-five percent were healthy at the time they signed the AD, only 2% already fulfilled the law’s definition of terminally ill patients, and 3% stated that they were not healthy but did not fulfill the definition of terminally ill patients. Because most of the AD signatories were 65 years of age or older, we compared their sociodemographic characteristics with the total Israeli population aged 65 years or older. More females (68% vs. 56.6%, P < 0.0001), more patients 85 years of age or older (27.7% vs. 13.5%, P < 0.0001), more Jewish patients (99.5% vs. 88.5%, P < 0.0001), fewer married patients (60% vs. 64.9%, P < 0.0001), and fewer widows signed ADs (28% vs. 35%, P < 0.0001; Table 1). The differences in sociodemographic characteristics for signatories between 2007 and 2010 were not statistically significant.
AD Counseling and the Setting Where the AD Was Signed Sixty-two percent of the signatories consulted with their children, 47.9% with their spouse, 27.6% with a physician, and 27.3% with a relative or someone else. Only 0.2% consulted a religious figure. Terminally ill patients consulted with their children less and with their physicians more than those who were not terminally ill (27.1% vs. 63.2%, P < 0.001, and 54.5% vs. 27.14%, P < 0.005, respectively). In 51.3% of the cases, the AD was signed in the presence of a physician and in 48.6% in the presence of a nurse. In most cases, the physicians were family physicians (60.2%) or internists (30.9%). In contrast, only 2.2% were oncologists. Only 9.9% of the ADs were signed in hospitals and 16% were signed in other physician settings.
Significant Suffering Among responses to questions that were included in the form, AD signatories could report paralysis in four limbs, unconsciousness, artificial feeding, and/or dementia. These conditions were defined as significant suffering in addition to the basic definition stated by the law. Signatories reported paralysis in four limbs (87.1%), unconsciousness (86.5%), artificial feeding (83.5%), and dementia (81.9%). Only 4.5% reported
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‘‘unbearable pain’’ and 13% reported respiratory distress as significant suffering.
AD-Authorized Procedures The AD form enables signatories to authorize or refuse 20 procedures in the end-stage patient state and 15 procedures in the non-end-stage patient state. In regard to the end-stage state, 55.5% of the AD signatories refused 19 of the 20 procedures (mean 16.6 4.7). In the non-end-stage patient state, 48% of the AD signatories chose to refrain from a maximum number of 15 procedures (mean 12.7 3.7). Table 2 lists the procedures that signatories refused to undergo. The most prevalent were intubation (93.1%), major surgery (92.5%), cardioversion (91.3%), and mechanical ventilation (91.3%). The most authorized procedures were diagnostic tests (33.6%) and minor surgery (21.5%).
Power of Attorney Power of attorney is a written authorization to represent or act on another’s behalf. Only 25.5% (298) of the 1167 signatories added power of attorney to a relative to the AD. Of these, 96 (35.6%) stipulated that in the event of a conflict between the AD and the power of attorney, the AD would take precedence and be obligatory.
Discussion Since the enactment of the Dying Patient Law, there has been an increase in the number of AD signatories,7 but the overall percentage that signed one, relative to the entire population, is almost negligible. Seven years after the Israeli parliament enacted the Table 2 Procedures for the Terminally Ill Patient as Authorized or Not Authorized, According to the AD (n ¼ 1167) Not Authorized Procedures Life-saving treatment Intubation Cardioversion Mechanical ventilation Cardiopulmonary resuscitation Resuscitation drugs Cardiac massage Invasive treatments Major surgery Chemotherapy Dialysis Antibiotics Minor surgery Supportive therapy Radiation Diagnostic tests AD ¼ advance directive.
Missing
%
N
%
N
93.1 91.3 91.3 91.2 89.3 87.7
1087 1065 1065 1064 1042 1024
4.8 4.7 5.1 5.1 4.8 4.8
56 55 60 60 56 56
92.5 90.3 89.5 75.6 73.5
1080 1054 1044 882 858
5.0 5.4 5.1 4.9 5.5
58 63 60 57 64
86.6 61.5
1011 718
5.1 5.5
59 64
1100
Shvartzman et al.
law (updated to May 2013), only 2662 Israelis have signed an AD. Various studies from the U.S. show contradictory data on the number of people that have signed an AD. Some studies show that only a small percentage of the population has done so,8,9 whereas others10 report that as much as 34% of the population has signed an AD. One study with ‘‘in-between’’ rates reported that less than 20% of the general population has signed an AD.4 A survey of 252 patients in palliative care institutions and health care professionals experienced in palliative care in the U.S., Germany, and Japan showed that the prevalence of a formal written AD was 79% in the U.S., 18% in Germany and 9% in Japan.11 Another survey of 1621 people in The Netherlands showed a prevalence of 7%.12 The present study is a first attempt to characterize Israelis who prepared and signed ADs. Ninety percent of the AD signatories were 65 years or older and 99% were Jewish. The comparison of AD signatories with the general Israeli population showed that a higher percentage of AD signatories were older and were Jewish (99.5% vs. 88.5%, P < 0.0001, respectively). A similar finding was reported by Pollack:10 signatories of the AD were older, with a higher percentage of Caucasians. Sixtyeight percent of the AD signatories were female and 60% were married. Similar results were reported from The Netherlands.12 Only about 2% of the Israeli population lives in a kibbutz, so it is noteworthy that a high percentage of AD signatories were from kibbutzim (community rural settlements). It is reasonable to assume that certain sectors, such as rural populations or populations with close contact with their family doctor, have greater awareness of this option so that a greater percentage of these populations sign ADs compared with hospital medical staff, patients in hospitals, and patients with incurable chronic diseases such as cancer or amyotrophic lateral sclerosis. It might be expected that patients admitted to oncology, cardiology, and geriatrics wards would be more likely to be predisposed to sign ADs. However, the results of this study indicate that most of the physicians who counsel in favor of ADs are family doctors (60.2%) or internists (30.9%). In contrast, only 2.2% of the signatories were counseled by oncologists and none by geriatricians. It would appear that family physicians play an important role in presenting the AD option to patients, whereas other physicians have either a low level of awareness or concerns about raising the issue. The relationship between family physicians, their patients, and their patients’ families provides a unique opportunity for understanding the dynamics, values, conflicts, and cultural preference of patients and families. Thus, family physicians can play an important
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role in providing information on AD to their patients. Family physicians can take into account any specific known conflicts and cultural sensitivities regarding the process of preparing and signing an AD. Involvement of the family physician in the AD signing process should be reinforced, and oncologists and geriatricians should be encouraged to be involved in AD implementation. Although the vast majority of AD signatories consulted with their children, spouses, other relatives, or physicians, only 0.2% consulted with a religious figure. This suggests that, for the most part, the population of AD signatories is secular. Similar findings were reported in a study conducted in two hospitals in Texas where data were collected for three months. Spouses and other family members had a strong influence on the decision to sign ADs, but unlike the present study, the authors also found that about 45% described their spirituality as a significant factor. In that study, a broader range of professionals including health care professionals, lawyers, and social workers were involved in the AD signing process.13 Only 4.5% defined ‘‘unbearable pain’’ and 13% defined respiratory distress as manifestations of significant suffering. In contrast, in a national study of 1587 patients, 25% reported pain as an important concern for their end-of-life care.14
Study Limitations The AD forms are long and complicated and can be difficult to understand and complete correctly, a situation that could result in inaccurate data. The main problem is that the form has two separate lists of procedures for two different situations: terminally ill patients at an early stage vs. end-stage patients. This could create confusion when filling out the AD. A second issue is with patients who stated that ‘‘power of attorney’’ was a priority issue. In many cases, even though this priority was cited, no actual power of attorney was granted. This may have stemmed from a misunderstanding of the form on this issue. We overcame this potential bias by analyzing only the relevant data. As noted earlier, the study population was different in sociodemographic characteristics from the general Israeli population of individuals aged 65 years and older, which could affect the generalizability of our findings.
Conclusions Since the enactment of the Dying Patient Law, the number of AD signatories has increased. However, there is still a great need to increase awareness and knowledge on this issue in the general population and among health care providers, especially among non-Jews and all individuals in the 65- to 75-year age
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Advance Directives in Israel
range. No oncologists, geriatricians, or cardiologists were involved in counseling related to signing ADs. As the most common causes of death are cancer, cardiovascular diseases, and cerebrovascular accidents, these professionals should be more involved in the process. We propose that the AD form be simplified so as to make it more ‘‘user friendly’’ and facilitate appropriate filing. Future studies should examine the actual implementation of the signed AD. It is also important to point out that whereas the signing of ADs is a legal platform to enable patients and families to carry out their preferences for end-of-life care, ADs also are very useful for health care providers. Awareness of the existence of ADs can facilitate advanced planning because the priorities of the patients and families are known ahead of time. The process of AD signing also can expose conflicts within the family, giving the medical team a chance to set appropriate treatment goals while attempting to bring these conflicts under control. Family physicians, who know the patient and family well, could and do play an important role in the AD process.
Disclosures and Acknowledgments The study was supported by the Goldman Fund of the Faculty of Health Sciences, Ben-Gurion University of the Negev, Beer Sheva, Israel. The authors have no commercial associations or sources of support that might pose a conflict of interest.
Supplementary Data Supplementary data related to this article can be found online at doi 10.1016/j.jpainsymman.2014.12. 009.
References 1. Billings JA. Palliative care. BMJ 2000;321:555e558. 2. Scanlon C. Ethical concerns in end-of-life care: when questions about advance directives and the withdrawal of life-sustaining interventions arise, how should decisions be made? Am J Nurs 2003;103:48e55.
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3. Neumann JL. Ethical issues confronting oncology nurses. Nurs Clin North Am 2001;36:827e841. 4. Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ 2010; 340:c1345. 5. Jewish medical ethics. 2011. Available at: http://98.131. 138.124/db/jme.asp. Accessed May 10, 2014. 6. Israeli Central Bureau of Statistics. Selected data for the International Senior Citizen’s Day. 2007. [press release]. Available at: http://www.cbs.gov.il/reader/newhodaot/ hodaa_template.html?hodaa¼200711188. Accessed January 13, 2013. 7. A controlled trial to improve care for seriously ill hospitalized patients: the study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA 1995;274:1591e1598. 8. Goodman MD, Tarnoff M, Slotman GJ. Effect of advance directives on the management of elderly critically ill patients. Crit Care Med 1998;26:701e704. 9. Wallace SK, Martin CG, Shaw AD, Price KJ. Influence of an advance directive on the initiation of life support technology in critically ill cancer patients. Crit Care Med 2001;29: 2294e2298. 10. Pollack KM, Morhaim D, Williams MA. The public’s perspectives on advance directives: implications for state legislative and regulatory policy. Health Policy 2010;96: 57e63. 11. Voltz R, Akabayashi A, Reese C, Ohi G, Sass H. End-of-life decisions and advance directives in palliative care: a cross-cultural survey of patients and healthcare professionals. J Pain Symptom Manage 1998;16: 153e162. 12. van Wijmen MP, Rurup ML, Pasman HR, Kaspers PJ, Onwuteaka-Philipsen BD. Advance directives in the Netherlands: an empirical contribution to the exploration of a cross-cultural perspective on advance directives. Bioethics 2010;24:118e126. 13. Duke G, Thompson S, Hastie M. Factors influencing completion of advanced directives in hospitalized patients. Int J Palliat Nurs 2007;13:39e43. 14. Teno JM, Gruneir A, Schwartz Z, Nanda A, Wetle T. Association between advance directives and quality of end-oflife care: a national study. J Am Geriatr Soc 2007;55: 189e194.
Journal of Pain and Symptom Management
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Original Article
Advance DirectivesdThe Israeli Experience Pesach Shvartzman, MD, Yonatan Reuven, BMedSc, Mordechai Halperin, MD, and Sasson Menahem, MD Department of Family Medicine and Palliative Care Unit (P.S., Y.R., S.M.), Clalit Health Services, Siaal Research Center for Family Medicine and Primary Care, Ben-Gurion University of the Negev, Beer-Sheva; Ministry of Health (M.H.), Jerusalem; and Palliative Clalit Health Services - Southern District Care Unit (P.S., S.M.), Beer-Sheva, Israel
Abstract Context. A major step in end-of-life care was achieved in December 2005 when the Israeli parliament passed the ‘‘Dying Patient Law.’’ The law (x31ex36) allows a competent person, even if he/she is healthy, to leave written instructions known as advance medical directives (AD), in which they explain their wishes in detail with respect to future medical treatment should it be determined that they are an incompetent terminally ill patient, as defined by the provisions of that law. Objectives. The aims were to characterize the group of individuals that completes ADs, characterize the content of recorded ADs, and analyze trends associated with them. Methods. We performed a cross-sectional study of the entire population that signed ADs in Israel from 2007 to September 2010. All computerized AD forms were retrieved from the Ministry of Health’s database. A descriptive analysis of trends, characteristics, and authorized procedures relating to the population of AD signatories was done. Results. There was an increase in the number of ADs signed during the study period (1167 signatories). About 90% of the AD signatories were 65 years of age or older and 95% were healthy at the time they completed the AD. In an end-stage condition, the mean number of procedures declined was 16.6 4.7 of 19. In a non-end-stage condition, the corresponding mean number was 12.7 3.7 of 15. Conclusion. There is a need to increase awareness in the general population of the option to prepare ADs. Family physicians, oncologists, and geriatricians should be more involved in this process. J Pain Symptom Manage 2015;49:1097e1101. Ó 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved. Key Words Advance directives, end-of-life care, suffering, dying patient, Patient Self-Determination Act
Introduction End-of-life care has become a major challenge in modern medicine. Many countries have launched campaigns to improve end-of-life care. The Patient SelfDetermination Act was enacted in the U.S. in 1991 in an effort to provide information on advance directives (ADs) to help patients maintain their autonomy and facilitate the process of independent decision making by individuals before they lose the capacity to make decisions on their own. The law obligated health care institutions to provide patients with information on ADs so that they could complete one and required hospitals to respect the wishes of the terminally ill patient.1 ADs
Address correspondence to: Pesach Shvartzman, MD, Department of Family Medicine and Palliative Care Unit, BenGurion University of the Negev, P.O. Box 653, Beer-Sheva 84105, Israel. E-mail: [email protected] Ó 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
could include a living will, durable power of attorney, do not resuscitate orders, and health care proxy.2,3 The guidelines mandate the health care staff to treat patients according to their expressed will. As a result, ADs could improve the quality of end-of-life care and reduce the emotional distress of the patient, the family, and the caregivers.4 In Israel, a major step in end-of-life care was taken in December 2005 when the Israeli parliament passed the ‘‘Dying Patient Law.’’5 The law (x8) defines a patient as terminally ill if that patient is suffering from an incurable medical problem and has a life expectancy that does not exceed six months even with medical
Accepted for publication: December 20, 2014.
0885-3924/$ - see front matter http://dx.doi.org/10.1016/j.jpainsymman.2014.12.009
1098
Shvartzman et al.
treatment. A terminally ill patient is defined as an endstage patient if he/she is in a medical condition in which a number of vital systems have failed and life expectancy does not exceed two weeks even with medical treatment. The law provides for practical tools, such as ADs (Appendix, available at jpsmjournal.com), to implement these aims. By signing an AD, the individual specifies the treatment they would be willing to receive in a state of terminal illness. In contrast to other countries, the patient also can specify the procedures they want to have performed even if the medical staff considers them inappropriate. All ADs are approved and stored in a computerized center at the Ministry of Health. Thus, hospitals can contact the center and verify specific ADs. To date, no study has assessed the overall levels of comprehension and implementation of the law or characterized the population that signs ADs. The existence of a central AD database in Israel provides a unique opportunity to characterize the entire population of AD signatories and the content, including procedures authorized in them.
Methods Setting According to the law, the AD form must be filled out under the guidance of a doctor or a nurse, signed by two witnesses, and sent to the Ministry of Health. At the Ministry of Health, the signed AD forms are entered into a computerized database and then stored. The AD is valid for five years, after which it must be renewed.
Study Design Our study was cross-sectional and included the entire population of AD signatories in Israel during the first years of the law implementation from January 2007 until September 2010. All AD computerized forms were retrieved from the AD database at the Ministry of Health, and an anonymous file containing all the AD form data was created. Identifying information such ID numbers, addresses, and phone numbers were deleted from the AD forms and encrypted. The data included sociodemographic variables (age, gender, place of birth) and date of death (if relevant). The study received institutional review board approval from the Meir Medical Center, Kfar Saba, Israel.
Statistical Analyses Data analysis was performed using SPSS, version 19.0 (IBM Corp., Armonk, NY). We performed a descriptive analysis for signatory sociodemographic characteristics, authorized procedures, and trends in
Vol. 49 No. 6 June 2015
the signing of ADs. All data from the ADs, such as age, gender, authorized procedures (name of procedure, authorized/not authorized), consultations with physicians, family members, and setting (clinic, hospital), were included in the analyses. Baseline demographic variables were compared between the population of AD signatories and the total Israeli population aged 65 years and older, as reported in the Israeli Central Bureau of Statistics.6 For continuous variables, mean values, SDs, and t-tests were used, and for categorical variables, the chi-square test was used. P-values below 0.05 were considered statistically significant, with a power of 0.8.
Results Trends in AD Signing Data were collected for 1167 AD signatories between the years 2007 and 2010. Over the course of the years since enactment of the Dying Patient Law, an increase was found in the number of AD signatories. In May 2013, the database included 2662 ADs. Although the increase in ADs between 2007 and 2010 may appear to be large, in reality, the percentage of people in Israel holding ADs is negligible (0.002% e0.03%), overall, and 0.017%e0.3% among individuals aged 65 years and older.
Characteristics of the Population of AD Signatories Table 1 presents the sociodemographic characteristics of the AD signatories. Ninety-nine percent were Jewish and 90% were 65 years of age or older. Among Table 1 Sociodemographic Characteristics of AD Signatories Compared With the General Israeli Population Aged 65 Years and Older AD Population 2007e2010 (n ¼ 1167) Variables Gender Female Age, yrs <50e64 65e74 75e84 85þ Nationality Jewish Arab Other Family status Married Single
%
Total Israeli Population Aged $65 Yrs (n ¼ 763,400)
N
%
N
P-value
68
792
56.6
32,100
<0.0001
9.6 34.1 53.9 27.7 (mis ¼ 12)
201 194 569 292 1055
d 52.3 34.2 13.5
d 399,258 261,083 103,059 763,400
99.5 0.3 0.2 (mis ¼ 250)
912 3 2 917
88.5 8.2 3.2
75,700 62,900 24,800 63,400
<0.0001
60 40 (mis ¼ 69)
661 437 1098
64.9 35
24,922 30,121 55,044
<0.0001
AD ¼ advance directive.
<0.0001
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Advance Directives in Israel
the latter group, 53.9% were 75e84 years old (mean age 78.26 9.5 years, range 30e101). Sixty-eight percent were female, 48% were born in Europe, 41% were Israeli born, 6% were born in Africa or Asia, and 5% were born in America. Sixty percent were married and 40% were single (widowed or divorced), 61% lived in their own home, 39% in sheltered homes, 63.5% in cities, and 26.8% in a kibbutz (rural community settlement), with 9.7% living in other places, for example, Arab village, community settlement. Ninety-five percent were healthy at the time they signed the AD, only 2% already fulfilled the law’s definition of terminally ill patients, and 3% stated that they were not healthy but did not fulfill the definition of terminally ill patients. Because most of the AD signatories were 65 years of age or older, we compared their sociodemographic characteristics with the total Israeli population aged 65 years or older. More females (68% vs. 56.6%, P < 0.0001), more patients 85 years of age or older (27.7% vs. 13.5%, P < 0.0001), more Jewish patients (99.5% vs. 88.5%, P < 0.0001), fewer married patients (60% vs. 64.9%, P < 0.0001), and fewer widows signed ADs (28% vs. 35%, P < 0.0001; Table 1). The differences in sociodemographic characteristics for signatories between 2007 and 2010 were not statistically significant.
AD Counseling and the Setting Where the AD Was Signed Sixty-two percent of the signatories consulted with their children, 47.9% with their spouse, 27.6% with a physician, and 27.3% with a relative or someone else. Only 0.2% consulted a religious figure. Terminally ill patients consulted with their children less and with their physicians more than those who were not terminally ill (27.1% vs. 63.2%, P < 0.001, and 54.5% vs. 27.14%, P < 0.005, respectively). In 51.3% of the cases, the AD was signed in the presence of a physician and in 48.6% in the presence of a nurse. In most cases, the physicians were family physicians (60.2%) or internists (30.9%). In contrast, only 2.2% were oncologists. Only 9.9% of the ADs were signed in hospitals and 16% were signed in other physician settings.
Significant Suffering Among responses to questions that were included in the form, AD signatories could report paralysis in four limbs, unconsciousness, artificial feeding, and/or dementia. These conditions were defined as significant suffering in addition to the basic definition stated by the law. Signatories reported paralysis in four limbs (87.1%), unconsciousness (86.5%), artificial feeding (83.5%), and dementia (81.9%). Only 4.5% reported
1099
‘‘unbearable pain’’ and 13% reported respiratory distress as significant suffering.
AD-Authorized Procedures The AD form enables signatories to authorize or refuse 20 procedures in the end-stage patient state and 15 procedures in the non-end-stage patient state. In regard to the end-stage state, 55.5% of the AD signatories refused 19 of the 20 procedures (mean 16.6 4.7). In the non-end-stage patient state, 48% of the AD signatories chose to refrain from a maximum number of 15 procedures (mean 12.7 3.7). Table 2 lists the procedures that signatories refused to undergo. The most prevalent were intubation (93.1%), major surgery (92.5%), cardioversion (91.3%), and mechanical ventilation (91.3%). The most authorized procedures were diagnostic tests (33.6%) and minor surgery (21.5%).
Power of Attorney Power of attorney is a written authorization to represent or act on another’s behalf. Only 25.5% (298) of the 1167 signatories added power of attorney to a relative to the AD. Of these, 96 (35.6%) stipulated that in the event of a conflict between the AD and the power of attorney, the AD would take precedence and be obligatory.
Discussion Since the enactment of the Dying Patient Law, there has been an increase in the number of AD signatories,7 but the overall percentage that signed one, relative to the entire population, is almost negligible. Seven years after the Israeli parliament enacted the Table 2 Procedures for the Terminally Ill Patient as Authorized or Not Authorized, According to the AD (n ¼ 1167) Not Authorized Procedures Life-saving treatment Intubation Cardioversion Mechanical ventilation Cardiopulmonary resuscitation Resuscitation drugs Cardiac massage Invasive treatments Major surgery Chemotherapy Dialysis Antibiotics Minor surgery Supportive therapy Radiation Diagnostic tests AD ¼ advance directive.
Missing
%
N
%
N
93.1 91.3 91.3 91.2 89.3 87.7
1087 1065 1065 1064 1042 1024
4.8 4.7 5.1 5.1 4.8 4.8
56 55 60 60 56 56
92.5 90.3 89.5 75.6 73.5
1080 1054 1044 882 858
5.0 5.4 5.1 4.9 5.5
58 63 60 57 64
86.6 61.5
1011 718
5.1 5.5
59 64
1100
Shvartzman et al.
law (updated to May 2013), only 2662 Israelis have signed an AD. Various studies from the U.S. show contradictory data on the number of people that have signed an AD. Some studies show that only a small percentage of the population has done so,8,9 whereas others10 report that as much as 34% of the population has signed an AD. One study with ‘‘in-between’’ rates reported that less than 20% of the general population has signed an AD.4 A survey of 252 patients in palliative care institutions and health care professionals experienced in palliative care in the U.S., Germany, and Japan showed that the prevalence of a formal written AD was 79% in the U.S., 18% in Germany and 9% in Japan.11 Another survey of 1621 people in The Netherlands showed a prevalence of 7%.12 The present study is a first attempt to characterize Israelis who prepared and signed ADs. Ninety percent of the AD signatories were 65 years or older and 99% were Jewish. The comparison of AD signatories with the general Israeli population showed that a higher percentage of AD signatories were older and were Jewish (99.5% vs. 88.5%, P < 0.0001, respectively). A similar finding was reported by Pollack:10 signatories of the AD were older, with a higher percentage of Caucasians. Sixtyeight percent of the AD signatories were female and 60% were married. Similar results were reported from The Netherlands.12 Only about 2% of the Israeli population lives in a kibbutz, so it is noteworthy that a high percentage of AD signatories were from kibbutzim (community rural settlements). It is reasonable to assume that certain sectors, such as rural populations or populations with close contact with their family doctor, have greater awareness of this option so that a greater percentage of these populations sign ADs compared with hospital medical staff, patients in hospitals, and patients with incurable chronic diseases such as cancer or amyotrophic lateral sclerosis. It might be expected that patients admitted to oncology, cardiology, and geriatrics wards would be more likely to be predisposed to sign ADs. However, the results of this study indicate that most of the physicians who counsel in favor of ADs are family doctors (60.2%) or internists (30.9%). In contrast, only 2.2% of the signatories were counseled by oncologists and none by geriatricians. It would appear that family physicians play an important role in presenting the AD option to patients, whereas other physicians have either a low level of awareness or concerns about raising the issue. The relationship between family physicians, their patients, and their patients’ families provides a unique opportunity for understanding the dynamics, values, conflicts, and cultural preference of patients and families. Thus, family physicians can play an important
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role in providing information on AD to their patients. Family physicians can take into account any specific known conflicts and cultural sensitivities regarding the process of preparing and signing an AD. Involvement of the family physician in the AD signing process should be reinforced, and oncologists and geriatricians should be encouraged to be involved in AD implementation. Although the vast majority of AD signatories consulted with their children, spouses, other relatives, or physicians, only 0.2% consulted with a religious figure. This suggests that, for the most part, the population of AD signatories is secular. Similar findings were reported in a study conducted in two hospitals in Texas where data were collected for three months. Spouses and other family members had a strong influence on the decision to sign ADs, but unlike the present study, the authors also found that about 45% described their spirituality as a significant factor. In that study, a broader range of professionals including health care professionals, lawyers, and social workers were involved in the AD signing process.13 Only 4.5% defined ‘‘unbearable pain’’ and 13% defined respiratory distress as manifestations of significant suffering. In contrast, in a national study of 1587 patients, 25% reported pain as an important concern for their end-of-life care.14
Study Limitations The AD forms are long and complicated and can be difficult to understand and complete correctly, a situation that could result in inaccurate data. The main problem is that the form has two separate lists of procedures for two different situations: terminally ill patients at an early stage vs. end-stage patients. This could create confusion when filling out the AD. A second issue is with patients who stated that ‘‘power of attorney’’ was a priority issue. In many cases, even though this priority was cited, no actual power of attorney was granted. This may have stemmed from a misunderstanding of the form on this issue. We overcame this potential bias by analyzing only the relevant data. As noted earlier, the study population was different in sociodemographic characteristics from the general Israeli population of individuals aged 65 years and older, which could affect the generalizability of our findings.
Conclusions Since the enactment of the Dying Patient Law, the number of AD signatories has increased. However, there is still a great need to increase awareness and knowledge on this issue in the general population and among health care providers, especially among non-Jews and all individuals in the 65- to 75-year age
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Advance Directives in Israel
range. No oncologists, geriatricians, or cardiologists were involved in counseling related to signing ADs. As the most common causes of death are cancer, cardiovascular diseases, and cerebrovascular accidents, these professionals should be more involved in the process. We propose that the AD form be simplified so as to make it more ‘‘user friendly’’ and facilitate appropriate filing. Future studies should examine the actual implementation of the signed AD. It is also important to point out that whereas the signing of ADs is a legal platform to enable patients and families to carry out their preferences for end-of-life care, ADs also are very useful for health care providers. Awareness of the existence of ADs can facilitate advanced planning because the priorities of the patients and families are known ahead of time. The process of AD signing also can expose conflicts within the family, giving the medical team a chance to set appropriate treatment goals while attempting to bring these conflicts under control. Family physicians, who know the patient and family well, could and do play an important role in the AD process.
Disclosures and Acknowledgments The study was supported by the Goldman Fund of the Faculty of Health Sciences, Ben-Gurion University of the Negev, Beer Sheva, Israel. The authors have no commercial associations or sources of support that might pose a conflict of interest.
Supplementary Data Supplementary data related to this article can be found online at doi 10.1016/j.jpainsymman.2014.12. 009.
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