- Email: [email protected]
Use of a Computer Program for Advance Care Planning with African American Participants
Use of a Computer Program for Advance Care Planning with African American Participants Sarah A. Markham, M.D., Benjamin H. Levi, M.D., Ph.D., Michael J. Green, M.D., Jane R. Schubart, Ph.D.
Grant support:7KLVVWXG\ZDVIXQGHGE\DJUDQWIURPWKH1,+1DWLRQDO ,QVWLWXWHRI1XUVLQJ5HVHDUFK 515 DQG3HQQ6WDWH8QLYHUVLW\ 6RFLDO6FLHQFH5HVHDUFK,QVWLWXWH:RRGZDUG(QGRZPHQWIRU0HGLFDO Science Education, and Tobacco Settlement Fund Award). Financial disclosure:7ZRRIWKHDXWKRUV %+/ 0-* KDYHLQWHOOHFWXDO property and copyright interests for the decision aid used for this study, 0DNLQJ
Author Affiliations: Sarah A. Markham, M.D., Department of Humanities, The Pennsylvania State University, College of Medicine; Benjamin H. Levi, M.D., Ph.D., Department of Humanities, The Pennsylvania State University, College of Medicine; Michael J. Green, M.D., Department of Humanities, The Pennsylvania State University, College of Medicine; Jane R. Schubart, Ph.D., Departments of Surgery and Medicine, The Pennsylvania State University, College of Medicine Correspondence:-DQH56FKXEDUW3K''HSDUWPHQWRI6XUJHU\8QLYHUVLW\'ULYH &+ +HUVKH\3$7HO ²)D[ ²(PDLO MVFKXEDUW# hmc.psu.edu
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INTRODUCTION
P
ublic awareness of the need to plan in advance for endof-life healthcare issues is, increasing, spurred by an aging population and the burdens of overly aggressive medical inerventions.1,2 Originally devised to help individuals refuse undesired life-prolonging medical treatments in the event they could not speak for themselves, more generally, advance directives provide a mechanism for promoting and respecting patients’ self-determination.2–8 But their goals have not been fully realized.2,9–11 Only 20–30% of adults complete such documents,12 and among African Americans, the percentage is even lower.2–3,11 Studies have shown that, despite concerns about being over-treated at the end of life,13 as well as being VLJQL¿FDQWO\ PRUH OLNHO\ WR KDYH HDUOLHU HQFRXQWHUV ZLWK OLIH threatening illnesses,14–17 African Americans are less than half as likely as Whites to know about or have an advance directive.18–22 There are many possible explanations for this disparity, including religious and cultural attitudes regarding death and dying,± ± concerns about being denied needed treatment at the end of life,14–17 and a family-oriented approach to decision-making.14–17 Studies show that the propensity to believe that God decides when a person will die correlates ZLWK$IULFDQ$PHULFDQV¶JUHDWHUGHVLUHIRU DQGUHFHLSWRI life-prolonging treatments. Other research reveals that, despite concern that life-prolonging treatments will not be fully covered by insurance companies, it is more common DPRQJ $IULFDQ $PHULFDQV WR EHOLHYH WKDW UHTXHVWLQJ WUHDWPHQWVZLOOHQKDQFHWKHTXDOLW\RIWKHLUFDUH17 Moreover, historical experiences with racism and discrimination fuels distrust in healthcare initiatives that might result in medical care being denied when it is most needed.14–17 These barriers speak to the need for novel interventions that can be used by African Americans to help them engage in advance care planning. We have previously described a computer-based decision aid for advance care planning that is well-accepted, accurate and effective for individuals with diverse illnesses and health statuses.24–27 What has not been reported is whether this program can be helpful for African Americans who tend to be more hesitant than Whites to engage in advance care planning. This paper provides results from a pilot study exploring the use and
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acceptability of this computer program among a group of African American adults.
METHODS Intervention: Making Your Wishes Known: Planning Your Medical Future (MYWK LV D FRPSXWHUEDVHG GHFLVLRQ DLG that uses audio-visual materials and plain language to unravel complex issues regarding life-or-death medical decisions.28 7KLV SURJUDP HQFRXUDJHV XVHUV WR UHÀHFW RQ YDULRXV FOLQLFDO scenarios and potential outcomes to help them reach informed decisions about treatment preferences. Additionally, it helps XVHUV DUWLFXODWH WKHLU JHQHUDO JRDOV DQG YDOXHV LQFOXGLQJ ZKDW³SRRUTXDOLW\RIOLIH´PHDQVWRWKHP DSSRLQWVXUURJDWH decision makers, and specify whether the surrogate’s judgment or the written advance directive should prevail if the two FRQÀLFW H[FOXGH SDUWLFXODU LQGLYLGXDOV IURP SDUWLFLSDWLQJ LQ WUHDWPHQW GHFLVLRQV DQG SURGXFH D SULQWDEOH DGYDQFH directive that documents an individual’s values and wishes in ERWKEURDGDQGVSHFL¿FWHUPV By taking a supportive and systematic approach to advance care planning, MYWK aims to make complex decisions less intimidating, and help individuals not only appreciate issues they may not have previously considered, but also see value in discussing these matters with others. Procedures: With assistance from the Community Research Outreach program at Penn State Hershey Medical &HQWHU 36+0& FRQWDFWZDVPDGHZLWK¿YHSUHGRPLQDQWO\ African American churches in Central Pennsylvania. Two pastors (both of whom ministered to inner-city, working FODVV FRPPXQLWLHV H[SUHVVHG D ZLOOLQJQHVV WR GLVWULEXWH ÀLHUVWKDWGHVFULEHGWKHUHVHDUFKVWXG\WRWKHLUFRQJUHJDQWV DQGUHTXHVWHGFROOHFWHGFRQWDFWLQIRUPDWLRQIURPLQWHUHVWHG individuals > 30 years of age. Following approval from the 36+0& +XPDQ 6XEMHFWV 3URWHFWLRQ 2I¿FH ÀLHUV ZHUH distributed and an initial phone call was made. Eligible individuals were invited to attend an in-person session at which informed consent was elicited and screening conducted to assure that participants had the ability to read at the 8th grade level (> RQ :5$7 29 were cognitively able to use the program (>RQ0LQL±0HQWDO 6WDWH ([DPLQDWLRQ 30 and did not have moderate/severe GHSUHVVLRQ RQ%HFN'HSUHVVLRQ,QYHQWRU\,, 31 Study SDUWLFLSDQWV WKHQ FRPSOHWHG D GHPRJUDSKLF TXHVWLRQQDLUH DQG SUHLQWHUYHQWLRQ LQVWUXPHQWV $&3 .QRZOHGJH 6HOI'HWHUPLQDWLRQ 32 +RSHIXOQHVV 33–34 hopelessness± Next, all participants were provided with secure laptops and headphones, and used the MYWK computer program in a private area. A research assistant was available to provide technical assistance, but refrained from providing DQ\VXEVWDQWLYHJXLGDQFHUHJDUGLQJ KRZ TXHVWLRQV VKRXOG be answered. Upon completion of the program, postintervention instruments were administered (repeat of JOURNAL OF THE NATIONAL MEDICAL ASSOCIATION
SUHLQWHUYHQWLRQ PHDVXUHV SOXV 'HFLVLRQDO &RQÀLFW 38 6DWLVIDFWLRQ ZLWK 'HFLVLRQ 39 6DWLVIDFWLRQ ZLWK $&3 $FFXUDF\RI$GYDQFH'LUHFWLYH 7LPHDQG(IIRUW DQGWKHQ participants were given both paper and electronic copies RIWKHLUDGYDQFHGLUHFWLYHVDORQJZLWKDJLIWFHUWL¿FDWHWR thank them for their time. Finally, several weeks after the study visit, participants were contacted by phone for a brief, follow-up interview, asking if they had made any changes WRWKHLUDGYDQFHGLUHFWLYH DQGLIVRZK\ RUKDGVKDUHGRU discussed their advance directive with anyone.
STATISTICAL ANALYSIS As a pilot study, this investigation was not powered to detect VWDWLVWLFDOO\VLJQL¿FDQWGLIIHUHQFHVDPRQJPHDVXUHGRXWFRPHV but rather was designed to examine whether a computer program might be useful for helping overcome barriers to advance care planning for African Americans. Nevertheless, WR VHH LI DQ\ VWDWLVWLFDOO\ VLJQL¿FDQW WUHQGV HPHUJHG ZH calculated descriptive statistics of all measures, with means and VWDQGDUG HUURUV SURYLGHG IRU FRQWLQXRXV YDULDEOHV IUHTXHQF\ distributions for categorical variables, and t-test results for pre-/post-intervention measures.
RESULTS Demographics Of the 41 people who expressed interest in the study, 18 FRPSOHWHG WKH SURWRFRO IHPDOH PHDQ DJH \HDUV Reasons for non-participation included: 11 could not be reached, GHFOLQHGSDUWLFLSDWLRQGLGQRWPHHWHOLJLELOLW\UHTXLUHPHQWV and 3 no-showed for their study visit. Approximately one-third RISDUWLFLSDQWVUHSRUWHGKDYLQJUHDGRUKHDUG³DORW´ RU³D IDLUDPRXQW´ DERXWDGYDQFHFDUHSODQQLQJRUOLYLQJZLOOV ZKLOH UHSRUWHG KDYLQJ UHDG RU KHDUG ³D OLWWOH´ RU ³DOPRVWQRWKLQJ´ 2QO\SDUWLFLSDQWVDOUHDG\KDGVRPH form of advance directive, and none had formally assigned someone to be their spokesperson. All but one participant reported owning a computer, with an average usage of 20 hours SHUZHHN UDQJH ±KRXUV VHH7DEOH
Outcomes .QRZOHGJHDERXWDGYDQFHFDUHSODQQLQJVLJQL¿FDQWO\LQFUHDVHG following the computer intervention (mean percent correct UHVSRQVHV ĺS ZLWKPRGHVWLQFUHDVHV LQ LQGLYLGXDOV¶ VHQVH RI VHOIGHWHUPLQDWLRQ ĺ S DQGQRGHFUHDVHLQSDUWLFLSDQWV¶OHYHORIKRSH,QDGGLWLRQ SDUWLFLSDQWVUHSRUWHGORZOHYHOVRIGHFLVLRQDOFRQÀLFWUHJDUGLQJ having to make choices about life-or-death medical treatments PHDQ YHU\ORZ YHU\KLJK DQGKLJKVDWLVIDFWLRQ ZLWKWKHGHFLVLRQVWKH\PDGH PHDQ QRWVDWLV¿HG YHU\VDWLV¿HG 3DUWLFLSDQWVVSHQWRQDYHUDJH± PLQXWHV completing the computer program, reported that the study
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Table 1. Participant characteristics
Characteristics
Details
Age
Mean \HDUV
SD \HDUV
Gender
Female
Male
High School or GED
Some college or technical school
College graduate
Graduate or professional school
Protestant or other Christian
Other
No formal religion
Not very strong
Somewhat strong
Moderately strong
Very strong
Never married
Married
Divorced or legally separated
Retired
Employed SDUWWLPH
Employed IXOOWLPH
Not currently employed
Other
Almost nothing
A little
A fair amount
A lot
Highest level of education
Religion
Spiritual strength
Marital status
Employment status
3UHNQRZOHGJHRIDGYDQFH directive Prior advance directive or living will
No
Prior formal assignment of spokesperson
No
No
Mean
SD
KRXUV
KRXUV
Strongly agree
Agree
Neither agree nor disagree
Disagree
Strongly disagree
Strongly agree
Agree
Neither agree nor disagree
Disagree
Strongly disagree
Strongly agree
Agree
Neither agree nor disagree
Disagree
Strongly disagree
Mean
SD
Excellent
Very Good
Good
Fair
Poor
2ZQDFRPSXWHU" Weekly computer use
,IHHOFRPIRUWDEOHXVLQJD computer Using a computer makes me nervous
,IHHOFRQÀGHQWLQP\DELOLW\ to use a computer. 2YHUDOOTXDOLW\RIOLIH SRRU H[FHOOHQW General health status
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Table 2. Summary of before/after results
Instrument Hopefulness Hopelessness 6HOIGHWHUPLQDWLRQ ACP knowledge
Rating Scale
Average before computer program
Average after computer program
Significant Change?
No
No
YHU\ORZ YHU\KLJK YHU\ORZ YHU\KLJK ORZOHYHO KLJKOHYHO QRFRUUHFWDQVZHUV DOOFRUUHFWDQVZHUV
SURWRFROLQYROYHGOLWWOHWRQREXUGHQ PHDQ QREXUGHQ H[WUHPHEXUGHQ DQGZHUHKLJKO\VDWLV¿HGZLWKWKHDGYDQFH FDUHSODQQLQJSURFHVV PHDQ QRWDWDOOVDWLV¿HG H[WUHPHO\ VDWLV¿HG $GGLWLRQDOO\ SDUWLFLSDQWV UHSRUWHG WKDW the computer program helped them clarify their healthcare ZLVKHV RI SDUWLFLSDQWV SUHSDUHG WKHP WR GLVFXVV WKHLU ZLVKHVZLWKWKHLUSK\VLFLDQ DQGIDPLO\PHPEHUV DQG JHQHUDWHG DQ DGYDQFH GLUHFWLYH WKDW DFFXUDWHO\ UHÀHFWHG WKHLUZLVKHV PHDQ QRWDWDOODFFXUDWH H[WUHPHO\ DFFXUDWH DQGZLWKZKLFKWKH\ZHUHKLJKO\VDWLV¿HG PHDQ QRWDWDOO H[WUHPHO\ VHH7DEOH ,Q IROORZXS SKRQH LQWHUYLHZV ZLWK RI WKH SDUWLFLSDQWV PHDQ ZHHNV SRVWVWXG\ YLVLW PRVW reported having shared their advance directives with IDPLO\PHPEHUV DQGVSRNHVSHUVRQV EXWRQO\ one individual had shared her advance directive with a healthcare provider. No participant reported having changed their spokesperson, and only one individual reported FKDQJLQJ KHU WUHDWPHQW ZLVKHV 6SHFL¿FDOO\ WKLV RQH SDUWLFLSDQWVWDWHGWKDWDIWHUKHUVSRNHVSHUVRQ KHUPRWKHU expressed discomfort with several of her end-of-life wishes, she now wished to have her mother’s judgment supersede the preferences documented in her advance directive in WKHHYHQWRIDFRQÀLFW WKRXJKVKHKDGQRW\HWXSGDWHGKHU DGYDQFHGLUHFWLYHWRUHÀHFWWKHVHFKDQJHV During the phone interview, many participants expressed appreciation for the opportunity to work through the computer program. Representative remarks include that the computer SURJUDP KHOSHG KHU SXW WKLQJV LQWR SHUVSHFWLYH WKDW ZKLOH end-of-life issues were not something one ever wanted to think about, it was comforting to have an advance directive ready in WKHHYHQWWKDWVKHFRXOGQRWPDNHKHURZQPHGLFDOGHFLVLRQV and that it was a relief to know that her family would not have WR¿JKWRYHUZKDWLQWHUYHQWLRQVVKHZRXOGZDQW
DISCUSSION This pilot study provides evidence that an interactive computer program is well accepted and can be an effective tool for advance JOURNAL OF THE NATIONAL MEDICAL ASSOCIATION
FDUHSODQQLQJ $&3 DPRQJ$IULFDQ$PHULFDQV,IRXUUHVXOWV are generalizable, then Making Your Wishes Known: Planning Your Medical Future (MYWK KDVWKHSRWHQWLDOWRRYHUFRPH some important barriers to ACP among African Americans. Participants’ high satisfaction with how MYWK guided them through the process of ACP is particularly promising in light of concerns by some that ACP is a mechanism for racially biased denial of medical care.14, 17 ,W LV DOVR HQFRXUDJLQJ WKDW LQGLYLGXDOV ZKR FRPSOHWHG MYWK VKRZHG VLJQL¿FDQW LQFUHDVHV LQ NQRZOHGJH about ACP—including knowledge about healthcare powers of attorney, advance directive documents, and common end-of-life medical conditions and treatments. Relatedly, participants reported feeling more informed and more empowered regarding potential end-of-life medical decisions, with no concomitant decrease in hope. Consistent with national data,±±WKUHHTXDUWHUVRIWKH African Americans in this study reported knowing “almost nothing” or “a little” about ACP prior to completing MYWK DQG RQO\ WZR SDUWLFLSDQWV KDG SUHYLRXVO\ FUHDWHG DQ DGYDQFH GLUHFWLYH ,W LV NQRZQ WKDW ORZ FRPSOHWLRQ UDWHV DFURVV PXOWLSOH SRSXODWLRQV DUH SDUWO\ due to the challenge of working through the many issues that must be addressed. As such, one of the strengths of MYWK is its ability to deconstruct complex decisions and help individuals systematically consider the pros, cons, and nuances involved in ACP—evidenced in this study by 94% of participants reporting that they felt they had made the EHVWGHFLVLRQVSRVVLEOHDQGZHUHYHU\VDWLV¿HGZLWKWKHP %HFDXVH LW FDQ DOVR EH TXLWH FKDOOHQJLQJ WR WUDQVODWH one’s values and goals into treatment decisions, it is reassuring that participants indicated that both the preliminary and edited versions of the advance directive generated by MYWK ZHUH DFFXUDWH LQ UHÀHFWLQJ WKHLU HQGRIOLIHZLVKHV DQGUHVSHFWLYHO\ QRWDWDOO DFFXUDWH YHU\DFFXUDWH VHH7DEOH 7KLVDVVHVVPHQW may be related to the computer-generated advance GLUHFWLYH DUWLFXODWLQJ QRW RQO\ VSHFL¿F ZLVKHV EXW DOVR
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86(2)$&20387(5352*5$0)25$'9$1&(&$5(3/$11,1* Table 3. Summary of Results
Instrument
Rating Scale
Mean
SD
Other important findings DJUHHGRUVWURQJO\DJUHHGWKDW they were aware of the options they had in each decision.
'HFLVLRQDO&RQÁLFW
YHU\ORZ YHU\KLJK
IHOWWKDWWKH\KDGPDGH LQIRUPHGFKRLFHVDQGZHUHVDWLVÀHG with their decisions. IHOWWKDWWKHLUGHFLVLRQVUHÁHFWHG what was important to them. IHOWWKDWWKHLUGHFLVLRQVZHUH consistent with their personal values
Satisfaction with Decision
YHU\VDWLVÀHG QRWVDWLVÀHG
IHOWWKDWWKH\PDGHWKHEHVW decisions possible ZHUHVDWLVÀHGZLWKWKHLU decisions.
Satisfaction with ACP
QRWVDWLVÀHG YHU\VDWLVÀHG
IHOWWKDW0<:.LQFUHDVHGWKHLU knowledge
D Overall satisfaction with 0<:.SURJUDP
QRWDWDOOVDWLVÀHG H[WUHPHO\VDWLVÀHG
IHOWWKDW0<:.KHOSHGWKHP clarify their healthcare wishes and feel greater control
E Accuracy of completed advance directive in UHÁHFWLQJZLVKHVIRU HQGRIOLIHFDUH
QRWDWDOOVDWLVÀHG H[WUHPHO\VDWLVÀHG
IHOWWKDW0<:.SUHSDUHGWKHP to discuss their wishes with their doctor.
F Amount of information SURYLGHGE\0<:.
WRROLWWOH DERXWULJKW WRRPXFK
QRWDWDOODFFXUDWH YHU\DFFXUDWH
Accuracy of ACP 3UHHGLWLQJ 3RVWHGLWLQJ
general treatment goals and conditions that participants LGHQWL¿HGDVGHWUDFWLQJIURPWKHLU³TXDOLW\RIOLIH´,IVR it also would help explain why participants reported very ORZ OHYHOV RI FRQÀLFW ZLWK WKH GLI¿FXOW GHFLVLRQV WKH\ were asked to make throughout the program. 7DNHQ WRJHWKHU WKHVH ¿QGLQJV PLJKW DOVR KHOS H[SODLQ why all participants in this study reported feeling prepared to discuss their wishes with family and close friends, and DOPRVWDOODFWXDOO\KDGGRQHVR,IJHQHUDOL]DEOHWKLVFRXOG EH DQ LPSRUWDQW ¿QGLQJ 7KLV LV EHFDXVH ZH NQRZ WKDW LQGLYLGXDOV DQG $IULFDQ $PHULFDQV LQ SDUWLFXODU DUH reluctant to explicitly discuss such issues with family and friends, despite relying on them to serve as surrogate decision PDNHUV 2–4,40–42, VXUURJDWHVWHQGWRXVHWKHLURZQFULWHULD SULRULWLHVWRPDNHGHFLVLRQVDQGFRQVHTXHQWO\SUHGLFWSDWLHQW SUHIHUHQFHVRQO\VOLJKWO\EHWWHUWKDQFKDQFH ±DQG LQ the absence of a broader understanding of a person’s values/ JRDOV IDPLO\ DQG IULHQGV ¿QG VXUURJDWH GHFLVLRQPDNLQJ
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IHOWWKDW0<:.SUHSDUHGWKHP to discuss their wishes with their family.
both challenging and stressful.4,46–48 Thus if MYWK can prepare and motivate African Americans to engage family and friends in substantive discussions, it could prove a very useful tool for ACP. ,QWHUHVWLQJO\GHVSLWHVLPLODUIHHOLQJVRISUHSDUHGQHVVWR discuss their wishes with their healthcare providers, only one LQGLYLGXDOUHSRUWHGKDYLQJKDGVXFKDFRQYHUVDWLRQ,QOLJKW of the fact that follow-up information was limited to a single brief telephone interview about 3 months after participants FRPSOHWHG WKHLU DGYDQFH GLUHFWLYHV LW LV GLI¿FXOW WR GUDZ FRQFOXVLRQV DERXW WKLV ¿QGLQJ $PRQJ WKH PDQ\ SRVVLEOH explanations, participants may have simply lacked the opportunity to interact with a health care provider during WKLVWLPHSHULRG7KDWVDLGWKH¿QGLQJWKDWLQGLYLGXDOVIHOW PRUHDEOHWRLQÀXHQFHPHGLFDOGHFLVLRQVDIWHUXVLQJMYWK DQGZHUHPRUHNQRZOHGJHDEOH VXJJHVWVWKDWMYWK may enable users to take more ownership and responsibility IRUWKHLURZQKHDOWKFDUHGHFLVLRQV,IVRGLVFXVVLRQVDERXW JOURNAL OF THE NATIONAL MEDICAL ASSOCIATION
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ACP between African Americans and their doctors might be expected to increase over an extended period of time, and perhaps, so too, respecting of individuals’ wishes for medical treatment.
Limitations As with all pilot studies, this study has multiple limitations. First, due to the small number of participants, female predominance, church-based recruitment, single inner-city location, and high levels of education and FRPIRUW ZLWK FRPSXWHUV WKH ¿QGLQJV PD\ QRW EH EURDGO\ generalizable. Second, the absence of a control group limits the ability to gauge the relative effectiveness of the decision aid. Third, because of the recruitment method, volunteers to this project may have been more highly motivated than those who chose not to participate. Fourth, this study did not detail participants’ religious/spiritual beliefs or their views about physicians and/or the healthcare system. Nevertheless, as a pilot study the primary aim was to determine the feasibility of using an interactive, computerbased intervention to overcome barriers to effective ACP among African Americans—notably, reluctance to engage in structured ACP or explicitly communicate one’s wishes to others—and this was accomplished.
CONCLUSION $GYDQFH FDUH SODQQLQJ $&3 LV DQ LPSRUWDQW SURFHVV LQ healthcare that is often overlooked and under-utilized, especially among African Americans. Prior efforts have been unsuccessful at promoting effective ACP among African Americans, who demonstrate low completion rates for advance directives and a reluctance to discuss end-of-life treatment wishes with others. This study provides preliminary evidence that an interactive computer program, such as Making Your Wishes Known: Planning Your Medical Future (MYWK PD\ be able to overcome several important barriers to effective ACP, and thereby help African Americans make informed decisions about future healthcare, accurately articulate these wishes in a personalized advance directive, and communicate these wishes with family members and other loved ones. 7R GHWHUPLQH WKH SURJUDP¶V DFWXDO HI¿FDF\ IRU RYHUFRPLQJ barriers to ACP among African Americans, future research would need to compare MYWK with standard approaches to ACP using a randomized control design with a larger and more representative cohort.
REFERENCES 6LQJHU 3$ 0DUWLQ '. .HOQHU 0 4XDOLW\ HQGRIOLIH FDUH patients’ perspectives. JAMA. ² +LFNPDQ6(+DPPHV%-0RVV$+7ROOH6:+RSHIRUWKHIXWXUH achieving the original intent of advance directives. Hastings Cent Rep. 6SHF1R 6²
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Grant support:7KLVVWXG\ZDVIXQGHGE\DJUDQWIURPWKH1,+1DWLRQDO ,QVWLWXWHRI1XUVLQJ5HVHDUFK 515 DQG3HQQ6WDWH8QLYHUVLW\ 6RFLDO6FLHQFH5HVHDUFK,QVWLWXWH:RRGZDUG(QGRZPHQWIRU0HGLFDO Science Education, and Tobacco Settlement Fund Award). Financial disclosure:7ZRRIWKHDXWKRUV %+/ 0-* KDYHLQWHOOHFWXDO property and copyright interests for the decision aid used for this study, 0DNLQJ
Author Affiliations: Sarah A. Markham, M.D., Department of Humanities, The Pennsylvania State University, College of Medicine; Benjamin H. Levi, M.D., Ph.D., Department of Humanities, The Pennsylvania State University, College of Medicine; Michael J. Green, M.D., Department of Humanities, The Pennsylvania State University, College of Medicine; Jane R. Schubart, Ph.D., Departments of Surgery and Medicine, The Pennsylvania State University, College of Medicine Correspondence:-DQH56FKXEDUW3K''HSDUWPHQWRI6XUJHU\8QLYHUVLW\'ULYH &+ +HUVKH\3$7HO ²)D[ ²(PDLO MVFKXEDUW# hmc.psu.edu
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INTRODUCTION
P
ublic awareness of the need to plan in advance for endof-life healthcare issues is, increasing, spurred by an aging population and the burdens of overly aggressive medical inerventions.1,2 Originally devised to help individuals refuse undesired life-prolonging medical treatments in the event they could not speak for themselves, more generally, advance directives provide a mechanism for promoting and respecting patients’ self-determination.2–8 But their goals have not been fully realized.2,9–11 Only 20–30% of adults complete such documents,12 and among African Americans, the percentage is even lower.2–3,11 Studies have shown that, despite concerns about being over-treated at the end of life,13 as well as being VLJQL¿FDQWO\ PRUH OLNHO\ WR KDYH HDUOLHU HQFRXQWHUV ZLWK OLIH threatening illnesses,14–17 African Americans are less than half as likely as Whites to know about or have an advance directive.18–22 There are many possible explanations for this disparity, including religious and cultural attitudes regarding death and dying,± ± concerns about being denied needed treatment at the end of life,14–17 and a family-oriented approach to decision-making.14–17 Studies show that the propensity to believe that God decides when a person will die correlates ZLWK$IULFDQ$PHULFDQV¶JUHDWHUGHVLUHIRU DQGUHFHLSWRI life-prolonging treatments. Other research reveals that, despite concern that life-prolonging treatments will not be fully covered by insurance companies, it is more common DPRQJ $IULFDQ $PHULFDQV WR EHOLHYH WKDW UHTXHVWLQJ WUHDWPHQWVZLOOHQKDQFHWKHTXDOLW\RIWKHLUFDUH17 Moreover, historical experiences with racism and discrimination fuels distrust in healthcare initiatives that might result in medical care being denied when it is most needed.14–17 These barriers speak to the need for novel interventions that can be used by African Americans to help them engage in advance care planning. We have previously described a computer-based decision aid for advance care planning that is well-accepted, accurate and effective for individuals with diverse illnesses and health statuses.24–27 What has not been reported is whether this program can be helpful for African Americans who tend to be more hesitant than Whites to engage in advance care planning. This paper provides results from a pilot study exploring the use and
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acceptability of this computer program among a group of African American adults.
METHODS Intervention: Making Your Wishes Known: Planning Your Medical Future (MYWK LV D FRPSXWHUEDVHG GHFLVLRQ DLG that uses audio-visual materials and plain language to unravel complex issues regarding life-or-death medical decisions.28 7KLV SURJUDP HQFRXUDJHV XVHUV WR UHÀHFW RQ YDULRXV FOLQLFDO scenarios and potential outcomes to help them reach informed decisions about treatment preferences. Additionally, it helps XVHUV DUWLFXODWH WKHLU JHQHUDO JRDOV DQG YDOXHV LQFOXGLQJ ZKDW³SRRUTXDOLW\RIOLIH´PHDQVWRWKHP DSSRLQWVXUURJDWH decision makers, and specify whether the surrogate’s judgment or the written advance directive should prevail if the two FRQÀLFW H[FOXGH SDUWLFXODU LQGLYLGXDOV IURP SDUWLFLSDWLQJ LQ WUHDWPHQW GHFLVLRQV DQG SURGXFH D SULQWDEOH DGYDQFH directive that documents an individual’s values and wishes in ERWKEURDGDQGVSHFL¿FWHUPV By taking a supportive and systematic approach to advance care planning, MYWK aims to make complex decisions less intimidating, and help individuals not only appreciate issues they may not have previously considered, but also see value in discussing these matters with others. Procedures: With assistance from the Community Research Outreach program at Penn State Hershey Medical &HQWHU 36+0& FRQWDFWZDVPDGHZLWK¿YHSUHGRPLQDQWO\ African American churches in Central Pennsylvania. Two pastors (both of whom ministered to inner-city, working FODVV FRPPXQLWLHV H[SUHVVHG D ZLOOLQJQHVV WR GLVWULEXWH ÀLHUVWKDWGHVFULEHGWKHUHVHDUFKVWXG\WRWKHLUFRQJUHJDQWV DQGUHTXHVWHGFROOHFWHGFRQWDFWLQIRUPDWLRQIURPLQWHUHVWHG individuals > 30 years of age. Following approval from the 36+0& +XPDQ 6XEMHFWV 3URWHFWLRQ 2I¿FH ÀLHUV ZHUH distributed and an initial phone call was made. Eligible individuals were invited to attend an in-person session at which informed consent was elicited and screening conducted to assure that participants had the ability to read at the 8th grade level (> RQ :5$7 29 were cognitively able to use the program (>RQ0LQL±0HQWDO 6WDWH ([DPLQDWLRQ 30 and did not have moderate/severe GHSUHVVLRQ RQ%HFN'HSUHVVLRQ,QYHQWRU\,, 31 Study SDUWLFLSDQWV WKHQ FRPSOHWHG D GHPRJUDSKLF TXHVWLRQQDLUH DQG SUHLQWHUYHQWLRQ LQVWUXPHQWV $&3 .QRZOHGJH 6HOI'HWHUPLQDWLRQ 32 +RSHIXOQHVV 33–34 hopelessness± Next, all participants were provided with secure laptops and headphones, and used the MYWK computer program in a private area. A research assistant was available to provide technical assistance, but refrained from providing DQ\VXEVWDQWLYHJXLGDQFHUHJDUGLQJ KRZ TXHVWLRQV VKRXOG be answered. Upon completion of the program, postintervention instruments were administered (repeat of JOURNAL OF THE NATIONAL MEDICAL ASSOCIATION
SUHLQWHUYHQWLRQ PHDVXUHV SOXV 'HFLVLRQDO &RQÀLFW 38 6DWLVIDFWLRQ ZLWK 'HFLVLRQ 39 6DWLVIDFWLRQ ZLWK $&3 $FFXUDF\RI$GYDQFH'LUHFWLYH 7LPHDQG(IIRUW DQGWKHQ participants were given both paper and electronic copies RIWKHLUDGYDQFHGLUHFWLYHVDORQJZLWKDJLIWFHUWL¿FDWHWR thank them for their time. Finally, several weeks after the study visit, participants were contacted by phone for a brief, follow-up interview, asking if they had made any changes WRWKHLUDGYDQFHGLUHFWLYH DQGLIVRZK\ RUKDGVKDUHGRU discussed their advance directive with anyone.
STATISTICAL ANALYSIS As a pilot study, this investigation was not powered to detect VWDWLVWLFDOO\VLJQL¿FDQWGLIIHUHQFHVDPRQJPHDVXUHGRXWFRPHV but rather was designed to examine whether a computer program might be useful for helping overcome barriers to advance care planning for African Americans. Nevertheless, WR VHH LI DQ\ VWDWLVWLFDOO\ VLJQL¿FDQW WUHQGV HPHUJHG ZH calculated descriptive statistics of all measures, with means and VWDQGDUG HUURUV SURYLGHG IRU FRQWLQXRXV YDULDEOHV IUHTXHQF\ distributions for categorical variables, and t-test results for pre-/post-intervention measures.
RESULTS Demographics Of the 41 people who expressed interest in the study, 18 FRPSOHWHG WKH SURWRFRO IHPDOH PHDQ DJH \HDUV Reasons for non-participation included: 11 could not be reached, GHFOLQHGSDUWLFLSDWLRQGLGQRWPHHWHOLJLELOLW\UHTXLUHPHQWV and 3 no-showed for their study visit. Approximately one-third RISDUWLFLSDQWVUHSRUWHGKDYLQJUHDGRUKHDUG³DORW´ RU³D IDLUDPRXQW´ DERXWDGYDQFHFDUHSODQQLQJRUOLYLQJZLOOV ZKLOH UHSRUWHG KDYLQJ UHDG RU KHDUG ³D OLWWOH´ RU ³DOPRVWQRWKLQJ´ 2QO\SDUWLFLSDQWVDOUHDG\KDGVRPH form of advance directive, and none had formally assigned someone to be their spokesperson. All but one participant reported owning a computer, with an average usage of 20 hours SHUZHHN UDQJH ±KRXUV VHH7DEOH
Outcomes .QRZOHGJHDERXWDGYDQFHFDUHSODQQLQJVLJQL¿FDQWO\LQFUHDVHG following the computer intervention (mean percent correct UHVSRQVHV ĺS ZLWKPRGHVWLQFUHDVHV LQ LQGLYLGXDOV¶ VHQVH RI VHOIGHWHUPLQDWLRQ ĺ S DQGQRGHFUHDVHLQSDUWLFLSDQWV¶OHYHORIKRSH,QDGGLWLRQ SDUWLFLSDQWVUHSRUWHGORZOHYHOVRIGHFLVLRQDOFRQÀLFWUHJDUGLQJ having to make choices about life-or-death medical treatments PHDQ YHU\ORZ YHU\KLJK DQGKLJKVDWLVIDFWLRQ ZLWKWKHGHFLVLRQVWKH\PDGH PHDQ QRWVDWLV¿HG YHU\VDWLV¿HG 3DUWLFLSDQWVVSHQWRQDYHUDJH± PLQXWHV completing the computer program, reported that the study
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Table 1. Participant characteristics
Characteristics
Details
Age
Mean \HDUV
SD \HDUV
Gender
Female
Male
High School or GED
Some college or technical school
College graduate
Graduate or professional school
Protestant or other Christian
Other
No formal religion
Not very strong
Somewhat strong
Moderately strong
Very strong
Never married
Married
Divorced or legally separated
Retired
Employed SDUWWLPH
Employed IXOOWLPH
Not currently employed
Other
Almost nothing
A little
A fair amount
A lot
Highest level of education
Religion
Spiritual strength
Marital status
Employment status
3UHNQRZOHGJHRIDGYDQFH directive Prior advance directive or living will
No
Prior formal assignment of spokesperson
No
No
Mean
SD
KRXUV
KRXUV
Strongly agree
Agree
Neither agree nor disagree
Disagree
Strongly disagree
Strongly agree
Agree
Neither agree nor disagree
Disagree
Strongly disagree
Strongly agree
Agree
Neither agree nor disagree
Disagree
Strongly disagree
Mean
SD
Excellent
Very Good
Good
Fair
Poor
2ZQDFRPSXWHU" Weekly computer use
,IHHOFRPIRUWDEOHXVLQJD computer Using a computer makes me nervous
,IHHOFRQÀGHQWLQP\DELOLW\ to use a computer. 2YHUDOOTXDOLW\RIOLIH SRRU H[FHOOHQW General health status
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Table 2. Summary of before/after results
Instrument Hopefulness Hopelessness 6HOIGHWHUPLQDWLRQ ACP knowledge
Rating Scale
Average before computer program
Average after computer program
Significant Change?
No
No
YHU\ORZ YHU\KLJK YHU\ORZ YHU\KLJK ORZOHYHO KLJKOHYHO QRFRUUHFWDQVZHUV DOOFRUUHFWDQVZHUV
SURWRFROLQYROYHGOLWWOHWRQREXUGHQ PHDQ QREXUGHQ H[WUHPHEXUGHQ DQGZHUHKLJKO\VDWLV¿HGZLWKWKHDGYDQFH FDUHSODQQLQJSURFHVV PHDQ QRWDWDOOVDWLV¿HG H[WUHPHO\ VDWLV¿HG $GGLWLRQDOO\ SDUWLFLSDQWV UHSRUWHG WKDW the computer program helped them clarify their healthcare ZLVKHV RI SDUWLFLSDQWV SUHSDUHG WKHP WR GLVFXVV WKHLU ZLVKHVZLWKWKHLUSK\VLFLDQ DQGIDPLO\PHPEHUV DQG JHQHUDWHG DQ DGYDQFH GLUHFWLYH WKDW DFFXUDWHO\ UHÀHFWHG WKHLUZLVKHV PHDQ QRWDWDOODFFXUDWH H[WUHPHO\ DFFXUDWH DQGZLWKZKLFKWKH\ZHUHKLJKO\VDWLV¿HG PHDQ QRWDWDOO H[WUHPHO\ VHH7DEOH ,Q IROORZXS SKRQH LQWHUYLHZV ZLWK RI WKH SDUWLFLSDQWV PHDQ ZHHNV SRVWVWXG\ YLVLW PRVW reported having shared their advance directives with IDPLO\PHPEHUV DQGVSRNHVSHUVRQV EXWRQO\ one individual had shared her advance directive with a healthcare provider. No participant reported having changed their spokesperson, and only one individual reported FKDQJLQJ KHU WUHDWPHQW ZLVKHV 6SHFL¿FDOO\ WKLV RQH SDUWLFLSDQWVWDWHGWKDWDIWHUKHUVSRNHVSHUVRQ KHUPRWKHU expressed discomfort with several of her end-of-life wishes, she now wished to have her mother’s judgment supersede the preferences documented in her advance directive in WKHHYHQWRIDFRQÀLFW WKRXJKVKHKDGQRW\HWXSGDWHGKHU DGYDQFHGLUHFWLYHWRUHÀHFWWKHVHFKDQJHV During the phone interview, many participants expressed appreciation for the opportunity to work through the computer program. Representative remarks include that the computer SURJUDP KHOSHG KHU SXW WKLQJV LQWR SHUVSHFWLYH WKDW ZKLOH end-of-life issues were not something one ever wanted to think about, it was comforting to have an advance directive ready in WKHHYHQWWKDWVKHFRXOGQRWPDNHKHURZQPHGLFDOGHFLVLRQV and that it was a relief to know that her family would not have WR¿JKWRYHUZKDWLQWHUYHQWLRQVVKHZRXOGZDQW
DISCUSSION This pilot study provides evidence that an interactive computer program is well accepted and can be an effective tool for advance JOURNAL OF THE NATIONAL MEDICAL ASSOCIATION
FDUHSODQQLQJ $&3 DPRQJ$IULFDQ$PHULFDQV,IRXUUHVXOWV are generalizable, then Making Your Wishes Known: Planning Your Medical Future (MYWK KDVWKHSRWHQWLDOWRRYHUFRPH some important barriers to ACP among African Americans. Participants’ high satisfaction with how MYWK guided them through the process of ACP is particularly promising in light of concerns by some that ACP is a mechanism for racially biased denial of medical care.14, 17 ,W LV DOVR HQFRXUDJLQJ WKDW LQGLYLGXDOV ZKR FRPSOHWHG MYWK VKRZHG VLJQL¿FDQW LQFUHDVHV LQ NQRZOHGJH about ACP—including knowledge about healthcare powers of attorney, advance directive documents, and common end-of-life medical conditions and treatments. Relatedly, participants reported feeling more informed and more empowered regarding potential end-of-life medical decisions, with no concomitant decrease in hope. Consistent with national data,±±WKUHHTXDUWHUVRIWKH African Americans in this study reported knowing “almost nothing” or “a little” about ACP prior to completing MYWK DQG RQO\ WZR SDUWLFLSDQWV KDG SUHYLRXVO\ FUHDWHG DQ DGYDQFH GLUHFWLYH ,W LV NQRZQ WKDW ORZ FRPSOHWLRQ UDWHV DFURVV PXOWLSOH SRSXODWLRQV DUH SDUWO\ due to the challenge of working through the many issues that must be addressed. As such, one of the strengths of MYWK is its ability to deconstruct complex decisions and help individuals systematically consider the pros, cons, and nuances involved in ACP—evidenced in this study by 94% of participants reporting that they felt they had made the EHVWGHFLVLRQVSRVVLEOHDQGZHUHYHU\VDWLV¿HGZLWKWKHP %HFDXVH LW FDQ DOVR EH TXLWH FKDOOHQJLQJ WR WUDQVODWH one’s values and goals into treatment decisions, it is reassuring that participants indicated that both the preliminary and edited versions of the advance directive generated by MYWK ZHUH DFFXUDWH LQ UHÀHFWLQJ WKHLU HQGRIOLIHZLVKHV DQGUHVSHFWLYHO\ QRWDWDOO DFFXUDWH YHU\DFFXUDWH VHH7DEOH 7KLVDVVHVVPHQW may be related to the computer-generated advance GLUHFWLYH DUWLFXODWLQJ QRW RQO\ VSHFL¿F ZLVKHV EXW DOVR
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86(2)$&20387(5352*5$0)25$'9$1&(&$5(3/$11,1* Table 3. Summary of Results
Instrument
Rating Scale
Mean
SD
Other important findings DJUHHGRUVWURQJO\DJUHHGWKDW they were aware of the options they had in each decision.
'HFLVLRQDO&RQÁLFW
YHU\ORZ YHU\KLJK
IHOWWKDWWKH\KDGPDGH LQIRUPHGFKRLFHVDQGZHUHVDWLVÀHG with their decisions. IHOWWKDWWKHLUGHFLVLRQVUHÁHFWHG what was important to them. IHOWWKDWWKHLUGHFLVLRQVZHUH consistent with their personal values
Satisfaction with Decision
YHU\VDWLVÀHG QRWVDWLVÀHG
IHOWWKDWWKH\PDGHWKHEHVW decisions possible ZHUHVDWLVÀHGZLWKWKHLU decisions.
Satisfaction with ACP
QRWVDWLVÀHG YHU\VDWLVÀHG
IHOWWKDW0<:.LQFUHDVHGWKHLU knowledge
D Overall satisfaction with 0<:.SURJUDP
QRWDWDOOVDWLVÀHG H[WUHPHO\VDWLVÀHG
IHOWWKDW0<:.KHOSHGWKHP clarify their healthcare wishes and feel greater control
E Accuracy of completed advance directive in UHÁHFWLQJZLVKHVIRU HQGRIOLIHFDUH
QRWDWDOOVDWLVÀHG H[WUHPHO\VDWLVÀHG
IHOWWKDW0<:.SUHSDUHGWKHP to discuss their wishes with their doctor.
F Amount of information SURYLGHGE\0<:.
WRROLWWOH DERXWULJKW WRRPXFK
QRWDWDOODFFXUDWH YHU\DFFXUDWH
Accuracy of ACP 3UHHGLWLQJ 3RVWHGLWLQJ
general treatment goals and conditions that participants LGHQWL¿HGDVGHWUDFWLQJIURPWKHLU³TXDOLW\RIOLIH´,IVR it also would help explain why participants reported very ORZ OHYHOV RI FRQÀLFW ZLWK WKH GLI¿FXOW GHFLVLRQV WKH\ were asked to make throughout the program. 7DNHQ WRJHWKHU WKHVH ¿QGLQJV PLJKW DOVR KHOS H[SODLQ why all participants in this study reported feeling prepared to discuss their wishes with family and close friends, and DOPRVWDOODFWXDOO\KDGGRQHVR,IJHQHUDOL]DEOHWKLVFRXOG EH DQ LPSRUWDQW ¿QGLQJ 7KLV LV EHFDXVH ZH NQRZ WKDW LQGLYLGXDOV DQG $IULFDQ $PHULFDQV LQ SDUWLFXODU DUH reluctant to explicitly discuss such issues with family and friends, despite relying on them to serve as surrogate decision PDNHUV 2–4,40–42, VXUURJDWHVWHQGWRXVHWKHLURZQFULWHULD SULRULWLHVWRPDNHGHFLVLRQVDQGFRQVHTXHQWO\SUHGLFWSDWLHQW SUHIHUHQFHVRQO\VOLJKWO\EHWWHUWKDQFKDQFH ±DQG LQ the absence of a broader understanding of a person’s values/ JRDOV IDPLO\ DQG IULHQGV ¿QG VXUURJDWH GHFLVLRQPDNLQJ
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both challenging and stressful.4,46–48 Thus if MYWK can prepare and motivate African Americans to engage family and friends in substantive discussions, it could prove a very useful tool for ACP. ,QWHUHVWLQJO\GHVSLWHVLPLODUIHHOLQJVRISUHSDUHGQHVVWR discuss their wishes with their healthcare providers, only one LQGLYLGXDOUHSRUWHGKDYLQJKDGVXFKDFRQYHUVDWLRQ,QOLJKW of the fact that follow-up information was limited to a single brief telephone interview about 3 months after participants FRPSOHWHG WKHLU DGYDQFH GLUHFWLYHV LW LV GLI¿FXOW WR GUDZ FRQFOXVLRQV DERXW WKLV ¿QGLQJ $PRQJ WKH PDQ\ SRVVLEOH explanations, participants may have simply lacked the opportunity to interact with a health care provider during WKLVWLPHSHULRG7KDWVDLGWKH¿QGLQJWKDWLQGLYLGXDOVIHOW PRUHDEOHWRLQÀXHQFHPHGLFDOGHFLVLRQVDIWHUXVLQJMYWK DQGZHUHPRUHNQRZOHGJHDEOH VXJJHVWVWKDWMYWK may enable users to take more ownership and responsibility IRUWKHLURZQKHDOWKFDUHGHFLVLRQV,IVRGLVFXVVLRQVDERXW JOURNAL OF THE NATIONAL MEDICAL ASSOCIATION
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ACP between African Americans and their doctors might be expected to increase over an extended period of time, and perhaps, so too, respecting of individuals’ wishes for medical treatment.
Limitations As with all pilot studies, this study has multiple limitations. First, due to the small number of participants, female predominance, church-based recruitment, single inner-city location, and high levels of education and FRPIRUW ZLWK FRPSXWHUV WKH ¿QGLQJV PD\ QRW EH EURDGO\ generalizable. Second, the absence of a control group limits the ability to gauge the relative effectiveness of the decision aid. Third, because of the recruitment method, volunteers to this project may have been more highly motivated than those who chose not to participate. Fourth, this study did not detail participants’ religious/spiritual beliefs or their views about physicians and/or the healthcare system. Nevertheless, as a pilot study the primary aim was to determine the feasibility of using an interactive, computerbased intervention to overcome barriers to effective ACP among African Americans—notably, reluctance to engage in structured ACP or explicitly communicate one’s wishes to others—and this was accomplished.
CONCLUSION $GYDQFH FDUH SODQQLQJ $&3 LV DQ LPSRUWDQW SURFHVV LQ healthcare that is often overlooked and under-utilized, especially among African Americans. Prior efforts have been unsuccessful at promoting effective ACP among African Americans, who demonstrate low completion rates for advance directives and a reluctance to discuss end-of-life treatment wishes with others. This study provides preliminary evidence that an interactive computer program, such as Making Your Wishes Known: Planning Your Medical Future (MYWK PD\ be able to overcome several important barriers to effective ACP, and thereby help African Americans make informed decisions about future healthcare, accurately articulate these wishes in a personalized advance directive, and communicate these wishes with family members and other loved ones. 7R GHWHUPLQH WKH SURJUDP¶V DFWXDO HI¿FDF\ IRU RYHUFRPLQJ barriers to ACP among African Americans, future research would need to compare MYWK with standard approaches to ACP using a randomized control design with a larger and more representative cohort.
REFERENCES 6LQJHU 3$ 0DUWLQ '. .HOQHU 0 4XDOLW\ HQGRIOLIH FDUH patients’ perspectives. JAMA. ² +LFNPDQ6(+DPPHV%-0RVV$+7ROOH6:+RSHIRUWKHIXWXUH achieving the original intent of advance directives. Hastings Cent Rep. 6SHF1R 6²
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