Department of Health and Human Services


OFFICE OF


INSPECTOR GENERAL


PATIENT ADVANCE DIRECTIVES:


FACILITY AND PATIENT RESPONSES


AUGUST 1993 OEI 06-91-01131

EXE UTIVE SUMMARY


PUROSE 

To examine the ealy responses of sta and patients in hospitas, nursing facilties, and 

home heath agencies to the requirements of the Omnibus Budget Reconcilation Act of 

1990 advance directive provisions. 

BACKGROUN 

On November 5 , 1990 the Congress enacted advance diective provisions as par of OBRA 

1990, which became effective on December 1 , 1991. The law s intent was to provide 

adult patients an opportnity to express their desires about medica treatment in a varety 

of settings including hospitas, nursing facilties and home heath agencies. An additional 

intent was education of the population on advance diectives such as living wils and 

durable power of attorney for heath care. 

Concerns have been rased about the impact of the advance diective provisions. Some 

concerns involve whether the provisions wil result in grter involvement of individuals 

in heath care decisions. Additional concerns addrssed patient understadig of materials 

as well as their importce. Finaly, concerns were raed that patients could be 

incon-ectly inormed of their rights or make unrsoned decisions due to introducing 

inormation at admission, often a tie of turmoil. 

Ths report is a companon to the report "Patient Advance Dirtives: Ealy 

Implementation Experience. " That report found that whie most Qf the saple facilties 

are complying with the genera legislative requirements, there is a lack of clea and 

consistent documentation in patients' chars. Ths lack of documentation increases the 

possibilty that patient trtment wishes. may not be followed. In addition, the fIrst reort 

found that 21 percent of the patients in hospitas, nursing facilties and home heath 

agencies have advance ditives, and that two-thds of the individuals interviewed from 

these facilties had some understadig of advance diectives. 

FACILITY SPECIFC INORMTION 

Whe no fmdigs or recommendations are presented in this report, a more detaed 

discussion is underten of the varance in the above fmdings by facilty tye: hospita, 

nursing facilty, and home heath agency. Withi each tye of facilty patient 

understadig, documentation, and sta and community education efforts ar examed 

with reference to such items as facilty charcteristics, patient payment tye, and patient 

charcteristics and dignoses. In addition, implementation problems faced by facilties and 

their suggestions for meetig reuirements and enhancing patient understadig 

provided. 
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ABLE OF CONTENTS


PAGE 

EXCUTI SlJY . i


INODUCTION
 . . 1


FACILITY REPORTS . . . . 3


Hospitas . . . . 4


Nursing Facilties . . . . . . . . 9


Home Heath Agencies. . . 


ENNOTE
 . . 17

INTRODUCTION


PURSE 

To examine the ealy responses of sta and patients in hospitas, nursing facilties, and 

home heath agencies to the requirements of the Omnibus Budget Reconcilation Act of 

1990 advance directive provisions. 

BACKGROUN 

On November 5 , 1990 the Congress enacted advance directives provisions as par of 

OBRA-90. These provisions bece effective on December 1 , 1991 . The law s intent 

was to provide adult patients an opportnity to express their desires about medical 

treatment in a varety of treatment settings . An additional intent was education of the 

population on advance diectives such as living wils and durable power of attorney for 

heath care . The legislation reuired Medicaid/Medcare heath cae providers to 

develop written policies and procedures and patient materials addressing directives under 

State law. Materials were to be presented to patients upon admission to care and 

documentation was to be placed in the patient's char statig whether or not he/she had an 

advance ditive. In addition, facilties were to ensure that advance ditives were not 

required to reeive trtment. Finaly, both sta and community education on advance 

ditives were to be provided by the facilty. 

Concerns exist about the impact of the advance ditive provisions. Based on previous 

studies there is concern whether the legislation wil result in greater patient involvement in 

heath care decisions . There is also concern that patients may not understad materials 

and their importce . Finy, there is concern that patients may be incon-ectly 

inormed of rights, or make unrsoned decisions due to providig inormation 

admission, often a tie of turmoij1. In order to addrss these concerns, we conducted a 

study of the ealy implementation of the advance diective provisions to exame 

complice with the legislative reuirments and these concerns. 

Data collection was conducted at 72 radomly selected facilties in 12 counties , in six 

States including urban, suburban and rura, as well as lage and smal facilties. The data 

was obtaed from sta interviews, written materis and a review of additional 

. documentation and patient chars. Additionaly, interviews were conducted with patients 

or family members who were radomly selected from the chars reviewed. 

To provide a context for the inormation presented in this reort, a brief summar of the


fmdigs from the previous report are presented.


Most Of The Sample Facilites Are Complying With The Genera Legislave 

Requirements. Generay, the facilties have successfully implemented the adminstrtive 

aspts of the advance ditive reuirments with hospita showing the highest level of 

overa compliance and home heath agencies the lowest. The legislative reuirement most 
freuently unmet was the facilty responsibilty to provide community education with 32 percent of the facilties faig to have plaed or provided such education on the topic. 

The Lack Of Clear And Consistent Documentaton In Patents' Charts Increases The 

Possiilit Their Treatent Wishes May Not Be Followed. Whe adminstrtive 

requirements have generay been met, only 26 percent of the sample facilties had clea 

documentation of whether the patient did or did not have an advance directive in 100 

percent of the chars reviewed. In addition , many facilties did not use consistent methods 

of documenting in the chars , makg it dicult to locate inormation on directives. 

Using weighted data projected to the genera population reviewed, 19. 5 percent of the 

chars lacked documentation or contaed ambiguous statements regardig advance

directives. Finaly, of the individuals with directives only 60 percent had a copy in their 

char. 

Twenty-one Percent Of The Patents In Hospitals, Nursng Facilites And Home Healh Agencies Have Advance Directives. 
 Examination of the weighted sample data indicates 

the population included in this inspection had a slightly higher rate of advance directive 

use than populations reported in the literature. In addition, nursing facilty and female patients were more liely to have a ditive. 

Two-thirds Of The Individuas Intervewed Had Some Undersandig Of Advance Directves. Understadig of advance diectives among the individuals in the saple was 

faily high with 67 percent of the 348 patients or famy members interviewed indicatig 

they understood advance ditives. Being inormed of the right to have a directive


appeaed to have had some impact on patients, with 21 percent of the individuas


interviewed statig they would consider gettg a ditive afer heag about them and


four percent of the individuals actualy executig a dirtive afer reciving trtment.


FACILIT SPECIFC INORMTION 

Ths report provides an indepth dicussion of data collected for a companon reort, Patient Advance Dirves: Ealy Implementation Experience. " Discussions are 

presented by the tys of facilties included in the inti inspection, hospitas, nursing facilties and home heath agencies. The intent of the inormation is to provide a point of 

comparson and examples of methods used by some facilties to meet reuirments of the 

. advance directive provisions, which may be used as guidace for others. 

We conducted our review accordig to the Quality StOJrds for Inspections issued by the President' s Council on Integrity and Effciency. 
FACILITY REPORTS

HOSPITALS 

Sample Characteriics:


24 Hospitas


591 Chars


120 interviews of patient/interested other


Patient Undersndig 

Patient Understaning Varied by Hospital Characteristics, Payment Type and 

Documentation Style. 

Patient understading of advance directives vared by type and size of hospita. A greater 

percentage of for-profit hospita patients demonstrated an understading of advance 

directives than those receiving care from non-profIt or public hospitas. Patient 

Hospita Patient understadig is somewhat higher in larger hospitas. 

Sample Understading For example, whie 68-70 percent of patients in large 

20 For-Profit 75% hospitas demonstrted understadig about ditives 

95 Non-Profit 62% only 62 % of patients in hospitas with 100 or fewer 

Public 60% bes understood. There was litte diference in patient

understading of advance dives between facilties 

that discussed inormation with the patient, provided written inormation to the patient or 

referr the patient to another person if they wished to discuss ditives. 

There were some dierences in understadig based on patient payment source. Medcae 

patients were most liely (75 %) to undersd advance ditives, followed closely by 

private insurace patients (72 %). The lowest understadig of dives was found 

among Medcad (18%) and HMO (43%) patients. 

The form of provider documentation of advance diectives also had some effect on patient

understadig. Greater understadig was found among patients whose facilties 

documented the advance diectives on a stadad form (65%) versus a note (55%). 

Likewise, patients whose personal signature wason the form had higher understadig. 

Of those who signed the form themselves 73 percnt understood the term advance 

ditive. Sixty-fIve percent of individuas whose form was signed by an individua from 

the facilty and only 52 percent of those who did not sign a form demonstrted an 

understadig of ditives.


Patients who understad advance diectives are more liely to either have or consider obtag an advance ditive. For example, 34 percent of those who understad aldy 

have a diective and another 48 percent would consider obtag one. Only eight percent would not consider an advance diective and fIve percent did not know. In contrst 

among those lackig understading of ditives only seven percent have a. diective and 

only 18 percent would consider one, whie 37 percent would not consider one and 23 

percent did not know. Among patients who understad ditives, understadig is higher for living wils (63%) than for durale power ofattomey for heath ca (41 %). . 
Hospital Documentation by Patient Characteriics 

Documentation an Existence of Directives Varied by Patient Age 

The presence of an advance directive was better documented in the medcal chars of older 

patients. Similarly, the older the patient, the more liely they were to have an advance 

Age 18- 31-45 46-60 61- -;75 directive. However, the 

Chart Documented 67. 81.0% 87. 87.5 % 86. younger age groups were more 

Have Directive 11.2% 20. 20. 34. liely to have a copy of the 

Directive in Char 81.8% 61.5% 76. 76. 55. directive in their char. 

Existence and Documentation of Advance Directives Varied by Patient Payment Type. 

Medicare patients had the highest percent of well documented chars, with the exception of a very smal number of self-payS patients. Medicare patients also had more advance 

directives than any other payment 

group. In contrst, Medicaid Medi- Medi- Private 

patients had the poorest cad cae HMO Inurace Other 

documentation and fewer advance Documented 74% 87. 84% 82.4% 80. 

diectives compared with other Have 30. 23. 21.3 % 19. 

pay grups. However, HMO Directive 

and Medcad patients had the Directive 75% 53. 87. 51.7% 53% Prent 

highest percent of diectives


present in the char. 

Some Patients 'fth Life Threatening Diagnoses Lacked Documentation. 

Missing documentation and documentation statig "unkown" were noted in 13 percent of 

patient chars with dignoses that could be considered lie threatenig. These diagnoses

included cacer, pneumoni, sepsis and thrombosis. In addition, 41 patients lackig documentation had a diagnosis of pregncy. These patients reresented 39 percent of al 

pregnancies reviewed. 

Hospital Education Effort 

The Great Majority of Hospitals ha Provided Staff an Communty Educaton 

Al but one hospita had provided education to the sta on the topic of advance diectives. 

The hospita having the largest percentages of chas with documentation provided sta 

education at regular sta meetigs, as oppsed to new employee orientation or regular sta inservice trg. However, the most prevalent meas of educatig the staf was 

through regular inservice trg. 
Eighty-three percent of the hospitas had provided, or planed, some form of community 

education. The most common method was having a member of the hospita staf provide ta or parcipate in a discussion on the topic in settings such as senior citiens centers 

schools, churches and a varety of other locations. Fort percent of the facilties 

providing education had either maied or distrbuted materials to the public on advance 

diectives. Some of the hospitas provided materials at community heath fais or blood 

drives. Finaly, 45 percent of facilties providing education had done so through press 

aricles, either in local newspapers or hospita publications. 

Hospitals Reponed Similar Approaches for Informing Patients 

Ninety-fIve percent of the hospitas provided written materials on the topic of advance 

directives to al adult patients. Generay, materials were provided by admissions 

personnel. In addition, 58 percent discussed the inormation with patients and 54 percent 

referred patients to another person if they expressed interest in the topic. Seventy-nie 

percent of the facilties stated they accommodated special nees of patients, with the 

largest number saying they made inormation avaiable in other laguages, if neeed. 

Twenty-fIve percent of the hospitas provided inormation through closed circuit 

television, or video tape. Finaly, eight percent of the hospitas stated they had 

inormation avaiable in large tye. 

Hospital Problems and Suggesions 

Many Hospitals Reponed Implementation Problems an Chllenges 

A varety of individuals responsible for implementig the advance diective provisions 

were interviewed in each hospita, including selected specia sta and legal counsel in 

some facilties. Seventy-fIve percent of hospitas stated they had experienced either some

kid of diculty in implementig the Act or they had concerns about the impact of some 

of its requirments. The most common problem mentioned was the tie involved. 

Hospitas stated it was difcult to address advance diecve inormation durig admission 

as it adds to the length of the process. Further, if the inormation was not provided or 

obtaed durig admission, additional tie was required for follow-up, frequently

requirg dit ca personnel involvement in the process. Ths could create diculties 

. due to constrts on diect ca sta tie. In addition, addig advance diectives to the 

admission process reuired additional tie to explai the inormation. One hospita stated 

they admitted approxiately 100 patients a day. Thus, the added tie requir to provide

the inormation bee a serious issue in terms of additional resource reuirements. 

Finaly, one hospita stated that implementig the requirments of the Act had reuired a gret dea of tie to develop materials, and change procedures and admission forms. 

The second most fruently cited diculty was patient confsion and apprehension regardig the inormation. Some hospitas stated the laguage was dicult to understad 

or the terms used for ditives were not consistent. Others stated patients often thought 
the hospita was tring to tell them they were going to die, or that having a directive was 

an admission the individual was going to die. One hospita stated some patients were concerned that the facilty was trying to obta their money if they should die, since the patient was confusing a directive with a legal wil. 

Four facilties mentioned that obtaning a copy of the directive from the individuals who 

aleady had one was a problem. Often the patients did not know where their directive was located or they were not aware that they should brig a copy to the hospita. Four 

facilties also mentioned that it was difcult to document whether a patient had a directive and provide the required inormation if the patient was admitted through an alternative 

process , such as from a clic, the emergency room or afer hours. Two facilties further stated it was difcult to follow-up and reach these individuals at a later time durig their hospita stay. 

The expense involved in implementing the Act was cited as a problem by three facilties. 

Added expenses were incurred due to the nee for more sta, the development of additional materials, the changing of forms and the nee to provide community education. Thee facilties also mentioned problems with the education requirements. Hospitas stated educatig their large stas and the community was dicult, due to the resources and tie required, but was importt so patients would enter the hospita with a better 

understadig of ditives.


Hospitals Offered Suggestions to Improve Implementation of The Advance Directive


Provisions


Emphasis on pre-amval awareness: Hospita providers were asked if they had any 

suggestions regardig methods of improving patient understadig on the topic of diectives and methods of providig the requir inormation to patients. The respnses focused on the nee for grter patient awareness and understadig before they amve at the hospita for ca. It was felt this would aleviate patient confsion and apprehension

when discussing the topic and determing if the patient had a diective. It would also alow the admission process to flow more smoothly and quickly. 

Community education: The most commonly mentioned suggestion for enhancing


awareness revolved around contiued community education efforts by the hospitas


. coupled with efforts of outside agencies, the meda and the governent. Ten facilties 

suggested governent involvement in patient education. It was suggested that the Heath Car Financing Adminstrtion make inormation avaible to Medcare clients when they intiy sign up for services. It was suggested that inormation should also be made avaiable to Medcaid reipients, perhaps though the Heath Deparent. Another 

suggestion was a mass maig on advance diectives by the Surgeon Genera, as has been done on other topics, and that public service anouncements on the topic be provided. 

addition, facilties suggested the IR could include inormation on the topic with their 

forms, insurace agencies could parcipate in education on the topic and that the America Association For Reti Persons. could ' provide. public education. ' Finaly, walet 
cards similar to Medi-alert cards or bracelets to indicate if an individual has an advance 

diective were suggested. 

Physician education and involvement: Nine facilties mentioned the nee to educate 

physicians and to increase their involvement in discussing advance directives with patients. It was stated that physicians may not have a fIrm understadig of advance directives 

thus contiuing education and education of medical students on advance directives should 

be provided. In addition, it was felt that patients had difculty comprehending detas 

about advance directives in the hospita setting and physicians should intiate discussions 

on the topic in the less stressful setting of their offce before the nee for hospitaation 

arose. 

Uniformity: Finaly, seven hospitas expressed the nee to make the inormation provided

on advance directives and forms more uniorm and more easily understood. It was 

suggested that simple brochures written at the sixth grde level, with ilustrations, be utilized and that the inormation presented from facilty to facilty be consistent. 

Furthermore, it was suggested that the terms utied to address advance dirtives be 

uniorm, as the terminology often vared by state and someties by facilty. A suggestion was made that materials be maied to individuals who were to be admitted to the hospita 

prior to their admission so they could familare themselves with the topic. Finaly, 

facilties stated that knowledgeable individuals must be avaiable at facilties to expla the 

inormation they provide to patients. It was suggested that individuals explaig this 

inormation could either be patient advocates, or nursing sta. 
%) . 

NUSING FACILITIS 

Sample Characteritics 

24 Nursing Facilties 

424 Chars 

113 Interviews of patients/interested others 

Patient Undersnding 

Patient understading of advance directives vared by tye and size of nursing facilty as 

well as by method of providing inormation. A greater percentage of for-profIt nursing facilty patients demonstrted an understadig of advance directives than patients 

receiving care from non-profIt or public facilties. Patient understading was also 

understadig. Patients in facilties that discussed inormation on advance diectives 

Patient somewhat higher in smaler facilties. For example, 86 

Sample Understading percent of individuals in nursing facilties with 100 or 

For-Profit 79. fewer beds, and 72 percent of individuals in facilties of 

Non-Profit 68. 101 to 150 bes demonstrted an understadig of 

Public 40. advance ditives. Only 44 percent of individuals 

associated with facilties over 150 beds demonstrted 

demonstrted a grter understadig than those only provided with written materials or 

refen-ed to another person for discussion. 

We found some dierences in patient understadig based on payment type. HM:O (80%) 

and self-pay (78%) patients were most liely to have an understadig of advance 

diectives. The group with the lowest understadig of ditives was Medcad (63 %) followed by Medcar patients (64%). 

The form of provider documentation of advance dives also had some effect on patient understadig. Patients whose facilty documented advance diective inormation on 

stadadied form (77%) versus a note (69%), had a grter understadig of advance 

ditives. Of the individuals with documentation on a form, 88 percent of those whose form was signed by a responsible par understood the term advance dirtive. Seventy­ nie percent of individuals who signed their own form and 67 percent of those who did 

not sign a form demonstrted an understadig of ditives. 

Whe patients who understad advance directives are more liely to either have or 

consider obtag a directive, the diference with those who lacked understadig was not 

great. For example, 43 percent of those who understad aleady have a ditive and 

another 16 percent would consider obtag one. Only seven percent would not consider a ditive, two percent did not know and six percent did not wish to answer. Among 

those lackig understadig of advance diectives, 34 percent had a ditive and 

percent would consider one, whie 15 percent would not consider one, 16 percent were unsure and nie percent did not wish to answer. Among patients who understad advance dirtives, there was litte dierence in, understadig of living wil (89 versus durable 

power of attorney for heath cae (86%). 
Nursing Facilty Documentation by Patient Characteriics 

Documentation and Exstence of Directives Varied by Patient Age 

The presence of an advance diective was better documented in the medical chars 

Age 60 or -: 61- 76- :: 90 younger patients. However the older 

Chars Documented 82. 65. 68. 69. patients were more liely to have an 

Have Directive 26.4% 39. 42. 1 % 42. advance diective as well as have a copy 

Directive in Char 77. 72. 78. 88. of the directive in the char. 

Documentation, Existence and Presence of Directives Varied by Patient Payment Type. 

The presence of documentation, having a directive and having a copy of the directive in 

the char vared among payment types. Patients with "other" forms of payment had the 

highest percentage of well-


documented chars, with HMO Medi- Medi- HMO Private Self- Other 

having the poorest. However cad cae Insurace pay 

self-pay and HMO patients Documented 75. 72. 25. 71.7% 78. 96. 

were most liely to have Have 25. 37. 43. 33. 53. 36.


diective, whie "other Diretive


Medcaid and self-pay patients Directive 83. 78. 71.4% 69. 81.3% 100%
 Present 

were most liely to have a copy 

of the ditive in. the char. 

Some Patents with Life Threatening Diagnoses Laked Documentaton. 

Missing documentation, documentation stating unable to comprehend, and documentation 

located in fmancia records were noted in 32 percent of the patient chars with diagnoses 

that could be considere lie threatenig. 'These patients had diagnoses such as cancer 

congestive hea faiure, chronic obstrctive pulmonar disease, cerebra vascular disease 

pneumonia, sepsis and thrombosis. Sixteen of the patients lackig documentation in the 

char had documentation in fmancial records located in admistrtive offces. Finaly, 12 

of the patients without documentation had a diagnosis of alheimer s disease or dementi. 

Nursing Facilty Education Effort


The Great Majority of Nursing Facilties Had Provided Staff an Communty Educaton. 

Al but one nursing facilty had provided education to the sta on the topic of advance 

directives. The facilties with the largest percentages of chars documented had provided sta education at regula inservice trg as opposed to new employee orientation or 

sta meetigs. Regula inservice trg was also the most prevalent meas of providig education on the topic. 
Seventy-one percent of the nursing facilties had provided, or planed, community 

education. The most common method of community education was providig ta at the 

nursing facilties for the residents and family members. Tal were provided by 

physicians, lawyers, and socia workers. Some ta were provided by facilty staf at 

community senior citizen centers and a seminar was provided by one facilty lawyer. 

Forty-seven percent of the facilties providing community education had either maied 

distributed materials to the public on advance diectives and 18 percent had placed arcles 

in the local press or newsletters. 

Informtion was Provided and Discussed with the Great Majority of Patients 

Ninety-two percent of the nursing facilties provided written materials to al adults on the 

topic of advance directives and 96 percent discussed the topic with the patient or family 

members. Generaly, materials were provided by admissions or social service personnel. 

If individuals expressed interest in the topic they were referred to another person for 

further discussion in 37 percent of the facilties. Seventy-one percent of the facilties 

stated they accounted for special nees of the patient with the largest number statig they 

made inormation avaiable in other laguages if neeed. Twenty-nie percent of the 

facilties stated they had inormation avaiable in large tye and eight percent made 

inormation avaiable in an audio visual format. 

Nursing Facilty Problems and Suggesions 

Man Nursing Facilties Reported Implementaton Problems an Challenges. 

A varety of individuals responsible for implementig the advance ditive provisions 

were interviewed in each nursing facilty, includig admintrtors, admissions diectors 

and socia service personnel. Seventy-nie percent of facilties stated they had 

experienced some kid of diculty in implementig the provisions. The difculty cited 

by the majority of the facilties (14) was the condition of the patient. Some facilties sad 

patients were frequently overwhelmed, trumatied or frghtened upon admssion due to 

their iless. Four facilties stated that, for these individua, admissions was a dicult 

time to discuss advance directives. Furter, some famy members prefen-ed to discuss 

the inormation with the patient themselves. Other facilties stated many patients were too 

. debiltated or were not competent to understad inormation provided to them. In such 

cases this creted problems, since familes were often out-of-State or univolved which 

made obtag inonnation on advance diectives either impossible or lengty. If 

individual did have a directive it was often dicult to obta a copy from the famy member. Additionaly, some fames did not want to hea the discussion about advance 

diectives due to the diculty of acceptig the patient' s condition or feeligs of guilt. 

The second diculty mentioned by fIve nursing facilties perted to understading of the 

terms used. Some facilties rerted concerns regardig whether the patients actualy 

understoo the tenns and the implications of medcal decisions that would result from 
their decisions. Other facilties were concerned about the vagueness of the terms, the diferences in state and federa law and the legal implications of the terms. 

Nursing Facilities Offered Suggestions to Improve Implementaton of The Advance 

Directive Provisions


Pre-arrval awareness: Nursing facilty providers were asked if they had any suggestions regarding methods of improving patient understadig and providing required inormation on advance directives to patients. As in the hospitas, the responses focused on the need for greater patient awareness and understading before they arve at the nursing facilty for care. It was felt that prior know ledge could aleviate some of the diffIculties 

experienced by facilties in obtag inormation on patient directives and alow the 

admission process to flow more smoothly. 

Community education: The most commonly mentioned suggestion for enhancing 

awareness revolved around community education efforts and ensurig consideration and 

execution of diectives if they are desir, before enterig a nursing facilty. Six facilties 

stated community education should be offered through a varety of avenues. Some 

suggestions for providing public education were public service anouncements, magazine arcles, and ta shows. Further suggestions included education by organtions such as 

the America Association of Reti Persons, senior citien centers, high schools and insurace companes. Four facilties suggested the governent parcipate in educational 

efforts by makg inormation avaiable when a person enrolls in any public assistace 

progr, applies for Social Security, Medcare, or obtas a drvers license. Additionaly, maigs from Social Security and avaiabilty of governent brochures were suggested. Finaly, two facilties suggested that a system of documentig advance diectives on 

drvers licenses, social security and Medca cas could be developed. It was felt that 

such documentation would educate peple to ca copies if they had a diective. 

Uniformity: A second group of suggestions perted to both the materials themselves and 

methods of providig inormation at the facilty. . Four facilties cited the nee for 

uniormity in terms as well as forms used for diectives. In addition, it was felt that the forms and inormation should be very simple to enhance understadig and reuce the 

feelig of being overwhelmed by the inormation. Two facilties suggested heath cae 

facilties in the community could coordiate their efforts in the provision of materi to 

encourage uniormity of inormation and understadig. 

Enhanced understading: A fmal suggestion involved increased patient understadig of 

directives in the facilty. Providing follow-up severa days afer admission along with the 

avaiabilty of individuals having experience with dirtives to answer questions were mentioned. In addition greater physician involvement. and providig the inormation at the 

most appropriate tie were suggested. It was felt these suggestions would promote 

understanding of the inormation provided durig the stressful admission process and 

encourage more than just paper complice. 
HOME HEALTH AGENCIES 

Sample Characteristics: 

24 Agencies


538 Chars 

115 interviews of patient/interested other 

Patient Undersanding 

Patient Understanding Varied by Home Health Agency Characteristics, Payment Type and Documentation Style. 

Patient understading of advance directives vared by tye and size of home heath agency (l). A greater percent of private home heath patients demonstrted an understading of advance directives than those receiving care from other types of agencies, though the 

understading of advance ditives based on whether inormation was discussed with the 

HHA Patient dierences were not great. Patient understadig was 

Sample Understading highest in smaler agencies (77 %) followed by the larger 

For-Profit 70% agencies (65 %). Only 45 percent of patients in mid-size 

Non-Profit 65% agencies, with average case loads between 75 and 150 

15 Public 60% patients a month, understood. As in hospitas, there was litte dierence in home heath patient 

patient, provided in written format or if the patient was referred to another person for 

discussion. 

The majority of patients (82. 6%) were Medicare recipients, with 68 percent demonstrtig understadig of advance diecves. Of the remaig payment tyes, only Medcaid and private insurace had at least ten individuals interviewed. Of these groups, 60 percent of Medcaid patients and 47 percent of private insurace patients demonstrted an understadig of diectives. 

The form of provider documentation of advance diectives also had some effect on patient 

understading. Greter understadig was found among patients whose agencies 

documented advance diectives in a note (79%) versus a stadad form (56%). However the largest number of individuals interviewed had a form in their char. Of those with a 

stadad form, 73 percent of those with no signature demonstrted understadig . compared to 62 percent of those signed by the patient. The lowest level of understading among patients with a form were those with a sta signature (44 %). 

Patients who understad advance ditives are more liely to have an advance ditive. 

For example, 32 percent of those who undersd aldy have a ditive, however, only six percent would consider obtag one. A large number, 25 percent would not consider an advance directives and fIve percent did not know. In contrast, among those lackig understading of advance ditives only 10 percent have a ditive and only 16 percent 

would consider a ditive, whie 29 percent would not consider a ditive and 18 percent did not know. Among patients who understad advance ditives, understadig 
higher for living wils (86 %) than for durable power of attorney for heath care (78 %),

although both are high. 

BRA Documentation by Patient Characteritics 

Documentation and Existence of Directives Varied by Patient Age 

The presence of an advance directive was better documented in the medical chars of older 

patients. Similarly, the older the patient, the more liely they were to have an advance 

Age 18-45 46- 61- 76- )-90 directive. However, the 

Chars Documented 66. 78.5% 77. 74. 66. younger age groups were more 

Have Directive 5.5% 19. 21.0% 26. 22. liely to have a copy of the 

Directive in Chart 12. 17. 1 % diective in their char. 

Existence an Documentation of Advance Directives Varied by Patient Payment Type. 

Once agai only Medica, Medcad and 

private insurace payment types had a Medi- Medi- Prvate 

suffcient number of patients to compare caid cae Inrace 

dierences in documentation. Of these three Documented 65. 75. 80. 87% 

payment tyes, private insurace patients Have 

had the highest percentage of documented Directive 23. 25. 

chars, patients with a diective and patients Directive 

Prsent 25.0%* 12. 

with a diective present.


* represents only one cae 

Some Patents With Life Threatening Diagnoses Lacked Documentation. 

Missing documentation and documentation statig "unable to determine" or "unable to
 comprehend" were noted in 26 percent of patient chars with dignoses that could be
 considere lie thtenig. The dignoses of these patients included cacer, chronic hea faiure, chronic obstrctive pulmonar disease, cerebra vascula accident, and pneumonia. 

In addition to these patients, three patients lackig documentation had a diagnosis of 

. pregnancy. 

HH Education Effort 

Whle Only Half of Th Home Health Agencies Had Provided Community Education, All Had Provided Staff Educaton. 

Al home heath agencies had provided education to the sta on the topic of advance ditives. The agencies having the lagest percentages of chars with documentation 
provided education alost equaly at regular sta inservice trag and new employee 

orientations, as opposed to sta meetigs. However, the most prevalent meas 

providing education on the topic was through regular staf inservice trg. 

Community education had been provided, or planed, by 50 percent of the home heath 

agencies. The most common method of community education was maig or distributig 

inormation to members of the community. Additionaly, 36 percent of the agencies 

providing inservice trag had a sta member discuss advance directives and 27 percent 

had placed arcles either in local newspapers or agency publications. 

Home Health Agencies Reponed Similar Approaches for Informing Patients 

All of the home heath agencies provided written materials on the topic of advance 

directives to al adult patients. Generay, materials were provided by the nurse or 

therapist makg the ftrst evaluative visit. In addition, 96 percent discussed the 

inormation with patients and 54 percent refen-ed patients to another person if they 

expressed interest in the topic. Seventy-fIve percent of the facilties stated they 

accommodated special nees of patients , with the lagest number saying they made 

inormation avaiable in other languages, if neeed. Seventeen percent of the agencies 

provided inormation in large tye and four percent had a video tape avaiable. 

HH Problems and Suggesions 

Man Home Health Agencies Reported Implementation Problems an Challenges. 

A varety of individual responsible for implementig the advance ditive provisions 

were interviewed in each home heath agency, including diector/admstrtors, qualty 

assurace personnel, and nurses. Seventy-nie percent of facilties stated they had 

experienced some kid of diculty in implementig the Act. The diculty cited most 

frequently by agencies (8) was the condition of the patient. Some agencies stated that 

freuently, patients had poor cogntion at admission or were overwhelmed by the proess 

due to their iless. Six agencies stated that many patients have been "bombarded" with 

inormation on directives before enterig home cae, ar tied of heag the inormation 

and are wonderig why they are being given this inormation. Additionaly, severa 

. agencies cited the lack of patient knowledge on the subject, the confsion in the terms 

used for the tyes of ditives and the inabilty to answer the patients ' legal questions as 

being problematic. 

The second group of diculties was more genera in nature. Four facilties cited the 

extr tie and additional burden placed on the individuals performing the aleady long 

intial evaluation procedure. Four agencies also mentioned that if an individual had a

ditive it was dicult to obta a copy , since they were frequently not kept at home. 

Furthermore, two facilties mentioned the diculty in honorig a diective if 911 is 

caed, as paredcs ignore the dive even if it is communicated to them. Finaly, 
two facilties cited the cost involved in implementing the reuirements, parcularly in developing forms and educational materials. 

Home Health Agencies Offered Suggestions to Improve Implementation of The Advance Directives Requirements 

Community education: Home Heath providers were asked if they had any suggestions regarding methods of improving patient understadig on the topic of directives and methods of providing the required information to patients. The responses focused on the 

nee to reach patients more effectively with inormation on the topic before medical care 

is required. Nine agencies stated that more public education should be provided by the 

meda and a varety of groups. National advocacy groups, community groups such as the Kiwans, churches, funera homes and public schools were cited as possible groups to 

provide education. Thee agencies cited the nee for doctors to be more involved in the 

education of their patients on advance directives. Additionaly, four agencies stated that 

the government should be more involved in the public education efforts, providing brochures for utiltion by smal home heath groups, and workig with national home 

heath groups to communicate inormation on directives. Furthermore, it was felt that Medcare and Socia Security should engage in providig inormation to recipients. Six

agencies also suggested that materials and terminology should be both simplied and made more uniorm to promote greater understading by patients and reuce confsion on the 

topic. 

Sharg inormation: A second suggestion provided by the home heath agencies perted to coordinatig efforts to reduce replication of paperwork pertg to advance diectives. 

Five facilties suggested hospitas and home heath agencies could shar patient records and forward advance ditive materials if one service followed the other. In addition, it was suggested that patients who were readmitted to ca severa ties thrughout the yea could have documents on fIle so that materials and services would not have to be 

replicated. Ths would not only make the evaluating nurse/therapists job more 

manageable, but would also reduce the number of ties an individual would have to be 

presented with the materis. It was felt this would reduce the antagonism some patients 

feel about the repetition of advance ditive inormation. 
, 

, , , 

ENDNOTES


1. The Patient Self-Determination Act was enacted as section 4206 and 4751 of the 

Omnibus Reconcilation Act of 1990, P. L. 101-508. It was originaly introduced as 

1766 by Senators Danorth and Moynian, and H.R. 5067 by Congressman Sander Levin. 

2. Levin, Sander, D. MI, Remarks in the House of Representatives on H. R. 5067; 

Patient Self-Determination, Thursday, Jun 28, 1990, CR page E-2190. 

3. McCloskey, Elibeth Leibold The Spirt of the PSDA" Practicing the PSDA 

Hasting Center , Sept-Oct 1991 , pg S 14. 

4. Kamer, R. , et al Efect of New York States Do Not Resuscitate Legislation On In 

Hospita Cardiopulmonar Resuscitation Prctice American Journl of Medicine, 1990, 

vol 88 , pgs. 108-111. 

5. Tarowski, K. , et al Readabilty of Pedtrc Biomedica Reseach Inormed 

Consent Forms Pediatrcs 1990, vol 85 , pgs. 58-62. 

6. Berman H, Rose L. Chosing the Right Health Care Pla Mount Vernon N.Y. 1 

Consumers Union, 1990, 3. 

7. La Puma, John , et al Advance Directives on Admission, Clical Implications and 

Analysis of the Patient Self-Determination Act of 1990" lAM July 1991 , Vol 266 

no. , pgs. 402-405. 

8. Self-pay patients had the highest percent of hospita chars with documentation present 

indicatig whether or not the person had a ditive. However, the number of self-pay 

patients included in the hospita saple was only 12, reresentig only two percent of the saple. In addition, none of the self-pay patients had an advance ditive. For these 

reasons self-pay results were omitted from the table.