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  saple facilties 
Qf the 
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 
ar 
understadig, documentation, and sta and community education efforts  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.  . . . . ..  ...   ...   ....    ....    .....     .....     .....     .....     ....    ....    .....     ......      ......      ......      ......      ......      ......      ......      ......      .......       .......       .......       .......       .......       .......       .......       .......       .......       .......       .......       .......       .......       .......       ......      ......      ......      ......      ....    ...   ..  
. . . ..  ..  . . . . . . . . . 
ABLE OF CONTENTS

PAGE 
SlJY 
EXCUTI  . 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 
bece 
OBRA-90. These provisions  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 
ditive. 
advance  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. 
ditive 
Concerns exist about the impact of the advance  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 
. Finy, 
and their importce  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  these concerns. 
reuirments and 
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. 
, a brief summar of the

To provide a context for the inormation presented in this reort
fmdigs from 
the previous report are presented.

Most Of The Sample Facilites Are Complying With The Genera Legislave 
Generay, the facilties have successfully implemented the adminstrtive 
Requirements. 
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  Whe adminstrtive 
May Not Be Followed. 
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 
Examination of the weighted sample data indicates 
Agencies Have Advance Directives. 

the population included in this inspection had a slightly higher rate of advance directive 
use than populations reported in the literature.  , nursing facilty and female
In addition
patients were more  ditive. 
liely to have a 
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 
ditives. 
they understood advance  Being inormed of the right to have a directive

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

gettg a ditive afer heag 
interviewed statig they would consider  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 
understadig is somewhat higher in larger hospitas. 
Hospita  Patient 
Sample  Understading  For example, whie 68-70 percent of patients in large 
For-Profit  75%  hospitas demonstrted understadig about ditives 
20 
only 62 % of patients in hospitas with 100 or fewer 
95 Non-Profit  62% 
bes understood. There was litte diference in patient
Public  60%  dives 
understading of advance  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 
dives 
private insurace patients (72 %). The lowest understadig of 
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  the term advance 
percnt understood 
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  aldy 
an advance ditive. For example, 34 percent of those who understad 
obtag 
have a diective and another 48 percent would consider  one. Only eight percent 
would not consider an advance diective and fIve percent did not know. In contrst 
ditives 
among those lackig understading of  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
ca 
for living wils (63%) than for durale power ofattomey for heath  (41 %). .  Hospital Documentation by Patient Characteriics 
an 
Documentation  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 
younger age groups were more 
Chart Documented  67.  81.0%  87.  87.5 %  86. 
Have Directive  11.2%  20.  20.  34.  liely to have a copy of the 
directive in their char. 
Directive in Char  81.8%  61.5%  76.  76.  55. 
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 
HMO  Other 
patients had the poorest  cad  cae  Inurace 
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 
Prent  75%  53.  87.  51.7%  53%
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 
ha 
The Great Majority of Hospitals  Provided Staff an Communty Educaton 
Al but one hospita had provided education to the sta on the topic of advance diectives. 
sta 
The hospita having the latrgerst pegrcenta.ges  of chas with documentation provided 
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  Eighty-three percent of the hospitas had provided, or planed, some form of community 
edtuaca tion. The most common method was having a member of the hospita staf provide
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 
an 
Many Hospitals Reponed Implementation Problems  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  Ths could create diculties 
personncela i nsvtoalv etmieent.  in the process. 
. due to constrts on diect  In addition, addig advance diectives to the 
admission process reuired additional tie to explai the inormation. One hospita stated 
they admitted appbroexieat ely 100 patients a day. Thus, the added tie requir to provide
the inormation  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 nceae .fo r grter patient awareness and understadig  before they amve at
the hospita for  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 
maig 
suggestion was a mass 
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
Reti 
America 
Association For  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  size of nursing facilty as 
tye and 
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 
somewhat higher in 
Patient  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 
understadig. Patients in facilties that discussed inormation on advance diectives 
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%). 
dives 
The form of provider documentation of advance  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 
obtag 
another 16 percent would consider 
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 
patients were more 
Chars Documented  82.  65.  68.  69.  liely to have an 
Have Directive  26.4%  39.  42. 1 %  42.  advance diective as well as have a copy 
of the directive in the char. 
Directive in Char  77.  72.  78.  88. 
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- Private  Self-
HMO  Other 
having the poorest. However  cad  cae  Insurace  pay 
self-pay and HMO patients  Documented  75.  72.  25.  71.7%  78.  96. 
Have 
were most liely to have  25.  37.  43.  33.  53.  36.

Diretive

diective, whie "other 
Medcaid and self-pay patients  Directive  83.  78.  71.4%  69.  81.3%  100%

Present 
were most liely to have a copy 
ditive 
of the  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 latrrgegst p ercentages of chars documented had provided
sta 
education at regula inservicet  rg  as opposed to new employee orientation or 
sta meetigs. Regula inservice  was also the most prevalent meas of providig 
education on the topic.  Seventy-one percent of the nursing facilties had provided, or planed, communtiaty  
education. The most common method of community education was providig  at the 
Tal 
nursing facilties for the residents and family metmab ers.  were provided by 
physicians, lawyers, and socia workers. Some  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  eight percent made 
tye and 
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 
nie 
and socia service personnel. Seventy- 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 
obtag 
made  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  before they arve at the nursing facilty
awareness and understading 
for care. It was felt that prior know ledge could aleviate some of the diffIculties 
obtag 
experienced by facilties in  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
ta  , magazine
arcles, and  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 
ca 
such documentation would educate peple to  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 
dierences were not 
HHA  Patient  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 
agencies, with average case loads between 75 and 150 
Non-Profit  65% 
15 Public  60%  patients a month, understood. As in hospitas, there
was litte dierence in 
home heath patient 
ditives 
understading of advance  based on whether inormation was discussed with the 
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
obtag 
six percent would consider  one. A large number, 25 percent would not consider
an advance directives and fIve percent did not know. 
In contrast, among those lackig 
ditives 
understading of advance  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 
diective in their char. 
Directive in Chart  12.  17. 1 % 
an 
Existence  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 
23.  25. 
had the highest percentage of documented  Directive 
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

thtenig. 
considere lie 
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 
HWhaled O nPlyr Hoavlf iodf eThd H Somtea Hfef aElth dAguenccaiest oHand. P rovided Community Education, All
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  trag 
sta 
provided education alost equaly at regular  inservice  and new employee 
orientations, as opposed to sta meetigs. However, the most prevatlerngt m.e as 
providing education on the topic was through regular staf inservice 
Community education had been provided, or planed, by 50 percent of the home heath 
maig 
agencies. The most common method of community education was  or distributig 
inormation to members of the community. Additionaly, 36 percent of the agencies 
trag 
providing inservice  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  , with the lagest number saying they made 
of patients
inormation avaiable in other languages, if neeed. Seventeen percent of the agencies 
provided inormation in large  four percent had a video tape avaiable. 
tye and 
HH 
Problems and Suggesions 
an 
Man Home Health Agencies Reported Implementation Problems  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 
iless. 
due to their  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  obta a 
was dicult to  copy ,  since they were frequently not kept at home. 
Furthermore, two facilties mentioned the diculty in honorig a diective if 911 is 
dive 
caed, as paredcs ignore the  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
pertg 
to coordinatig efforts to reduce replication of paperwork  to advance diectives. 
Five facilties suggested hospitas and home heath agencies could shar patient records
ditive 
and forward advance  materials if one service followed the other.  , it
ca  In addition
was suggested that patients who were readmitted to 
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.