Download How to Implement the “Let Me Decide”

OUTCOMES IN PRACTICE
How to Implement the “Let Me Decide” Advance
Health and Personal Care Directive Program
D.W. Molloy, MRCP, FRCP(C), Rosalie Russo, Angela Stiller, and M.J. O’Donnell
A
dvance directives extend patient autonomy and
allow individuals to maintain control of their own
health care after they can no longer speak for themselves. Despite these benefits, advance directives are being
underutilized in most health care sectors [1–3]. Results from
studies evaluating advance directive interventions have
been variable [4–10]. The highest levels of advance directive
completion have been associated with systematic implementation [11–13].
In 1988, we developed the Let Me Decide (LMD) advance
directive program [14]. The LMD directive has instructional
and proxy components [15] and includes a chart on which
patients indicate their health care choices (Figure). We have
evaluated the systematic implementation of the program in
nursing homes [12,16] and in the community [13,17]. The
first study [12] was a randomized controlled trial that examined the effect of program implementation in nursing homes
on patient and family satisfaction. Six nursing homes were
pair-matched on key characteristics, and 1 home per pair
was randomized to the intervention. Among the intervention homes, 49% of competent residents and 78% of families
of incompetent residents completed directives. There was no
difference in satisfaction between intervention and control
homes. The intervention homes reported fewer hospitalizations per resident and less resource use while the proportion
of deaths in the intervention and control homes were similar.
The second study [13] evaluated the feasibility and effectiveness of implementing the program among communitydwelling veterans. Eighty-two (71%) of 116 veterans expressed interest in receiving information about the program
and 67 (82%) of these were educated. Forty-two (63%) of
the 67 educated veterans completed directives. Veterans
who were educated about directives reported that the education process was beneficial and should be offered to other
veterans. We have found consistent support from residents,
families, and health care workers for the LMD program
[12,14,16,17].
In this article, we describe our systematic approach to
the implemention of the LMD program in long-term care
facilities.
Vol. 7, No. 9
Laying the Groundwork
Identify Barriers
A number of barriers to directive implementation have been
identified. Patients can have misconceptions and fears about
directives [3,18,19] and report that physicians fail to initiate
discussions or promote them [20]. Health care workers cite
lack of knowledge, education, and experience with using
advance directives [11,14,21,22] and lack of time for discussion of directives with patients and their families [23]. Others
feel that directives are vague or too complicated [24]. We
have developed a tool that measures barriers to implementing advance directives in different care sectors. Our questionnaire lists 30 potential barriers (eg, time contraints, patients unable to understand directive concepts, conflicting
attitudes or opinions among patients, families, and other
health care workers) and asks respondents to indicate which
barriers they encounter and to rate those they encounter on
a scale from least important to most important. By identifying barriers, institutions can adapt their educational programs and customize them to meet the specific needs of
patients and staff.
Identify Staff Educational Needs
When advance directives are introduced in long-term care
settings, the majority of residents choose palliative care for
irreversible conditions. Most die in the long-term care institution rather than in a hospital, increasing the palliative care
burden on these institutions. We employ a questionnaire that
assesses for health care workers’ educational needs in areas
such as stress management, management of pain, and management of the psychological impact of death on patients
and families. Like the barriers questionnaire, this instrument
D.W. Molloy, MRCP, FRCP(C), Professor of Medicine, Division of
Geriatric Medicine, McMaster University, Director, Geriatric Research
Group, Henderson Hospital, Hamilton, Ontario, Canada; Rosalie Russo,
Senior Research Coordinator, Geriatric Research Group, McMaster
University; Angela Stiller, Research Coordinator, Geriatric Research
Group, McMaster University; and M.J. O’Donnell, Clinical Fellow,
Geriatric Research Group, McMaster University.
JCOM September 2000 41
LET ME DECIDE
If my condition is Reversible/Acceptable
Life-threatening
illness
Cardiac
arrest
Palliative
Limited
Surgical
Intensive
No CPR
CPR
Date
Signature
If my condition is Irreversible/Intolerable
Feeding
Life-threatening
illness
Cardiac
arrest
Basic
supplemental
Intravenous
Tube
Palliative
Limited
Surgical
Intensive
No CPR
CPR
Power of Attorney Signature(s)
Feeding
Basic
supplemental
Intravenous
Tube
Physician Signature
Date of next review should be once a year, after an illness, or if any change in health
Date
Signature
Power of Attorney Signature(s)
Physician Signature
Date
Signature
Power of Attorney Signature(s)
Physician Signature
Figure. Personal health care chart from Let Me Decide directive. (Reprinted with permission from Molloy DW. Let me decide. Troy,
ON: Newgrange Press; 1999.)
is helpful for developing and adapting educational programs for health care workers.
Establish Policies
Institutions should have policies in place that state when and
how to introduce directives to residents, ensuring that a standardized approach is maintained. Guidelines and procedures for charting, contacting individuals about directives,
contacting substitute decision makers, and choosing different treatment protocols depending on the choices expressed
in the directive should be outlined. Procedures should clearly state how to follow directives, what each level of care
means, and how to interpret personal statements. A study in
a community setting [25] found that nursing staff had positive attitudes toward patient autonomy and advance directives, but had difficulty finding time to discuss directives
with patients and their families, let alone educate them and
assist in their completion. Since time constraints is one of the
most common reported barriers to directive implementation, administrators need to examine issues of workload
when developing new policies for advance directives.
Appoint and Train Facilitator
Implementing the advance directive program requires a
well-trained and skilled health care facilitator. In the past,
42 JCOM September 2000
nurses have been trained for this role in a variety of settings;
however, staff in other health care–related fields could also
be trained (eg, social worker, program coordinator). Ideally,
the facilitator should be on staff at the institution and be
familiar with other staff, residents and families, residents’
council, and the administrative structure of the institution.
As the facilitator’s skill and knowledge are paramount to
the successful completion of the directive program, facilitators attend specialized training workshops. A 2-day “train
the trainer” workshop for facilitators provides an explicit
standardized approach to educating hospital, nursing home,
community health service staff, residents, and families. Facilitators learn how to measure competency, complete directives, and negotiate and deal with family conflict. How to
effectively disseminate information about the program in
their institution (eg, mailings, open information sessions) is
also discussed. Training workshops provide background
material on advance directives research, ethical issues, current legislation, and policy development.
Educate Health Care Workers
Facilitators provide standardized education for health care
staff in the long-term care facility, the receiving hospitals, and
community health care services (eg, nursing staff, medical
staff, emergency staff, social workers, palliative care teams,
Vol. 7, No. 9
OUTCOMES IN PRACTICE
in-service educators, dietitians, occupational/physiotherapists,
health records, admitting, community health care representatives, staff on clinical teaching units). During 1-hour presentations, the facilitator describes the 5 sections of the directive, explains how to interpret treatment choices, and
discusses the impact of the directive on staff. Additional education is provided to hospital emergency department staff
and in-house physicians at the long-term care facilities.
Regular refresher sessions maintain awareness among previously trained staff and are mandatory for the orientation of
new staff. Background material, including videos and books
about the directive program, are made available to staff
through library resources. In long-term care facilities, educational sessions are provided for the residents’ council, which
helps cultivate a supportive environment for directive implementation.
Implementing the Directive
Once the facility establishes policies and educates the staff,
directive implementation can begin. Several steps are
involved.
Step 1: Screen for Cognitive Impairment and Other Deficits
As the first step in implementing the directive, facilitators
screen individuals for cognitive impairment or other deficits using the Standardized Mini-Mental State Exam
[26,27], a short screening measure of cognitive function.
Patients who score 20 or greater are 95% likely to be able to
fully understand or appreciate the consequences of the
choices offered as part of the advance directive [28]. Five
percent of people who score less than 20 may be competent
to complete a directive. A cut-off of 15 is used to ensure
100% of people competent to complete a directive are given
the opportunity to be educated and complete a directive
[12]. Residents who score 15 or above receive education
about directives (Step 2, below). In the cases where people
score less than 15, the family is approached to determine
their interest in completing an “expression of wishes for
future care for their incapable family member.” This document is the same one completed by competent residents but
serves only to provide a standardized format for documenting the treatment they believe patients would want in
particular situations.
Mini-mental state exam scores can be affected by depression, which can alter the ability to comprehend, make appropriate decisions, and appreciate consequences. Residents
with depression are more likely to refuse life-sustaining
medical treatment [29,30]. If depression is suspected, patients are screened with the Geriatric Depression Scale [31].
If the scale score suggests depression, the facilitator notifies
the responsible physician and terminates the educational
process until further notice.
Vol. 7, No. 9
Table 1. Excerpt from Introduction to Let Me Decide Directive
In this directive I am stating my wishes for my health and personal
care should the time ever come when I am not able to communicate
because of illness or injury. This directive should never be used if I
am able to decide for myself. It must never be substituted for my
judgment if I can make these decisions.
If the time comes when I am unable to make these decisions, I would
like this directive to be followed and respected. Please do everything
necessary to keep me comfortable and free of pain. Even though I
may have indicated that I do not want certain treatment, I recognize
that these may be necessary to keep me comfortable. I understand
that my choices may be overridden if the treatment is necessary to
maintain comfort.
I have thought about and discussed my decision with my family doctor. In an emergency, please contact my power(s) of attorney/substitute decision maker(s) or my family doctor listed below. If these people are not available, then please do as I have requested in this
directive.
Reprinted with permission from Molloy DW. Let me decide. Troy, ON:
Newgrange Press; 1999.
Step 2: Educate
Facilitators inform residents individually that a new
advance directive program is being implemented in the facility and that the residents have an opportunity to be educated about directives and to complete one. Residents are invited to review an informational booklet and to view three
20-minute educational videos prior to educational sessions.
In educating residents, facilitators use individualized communication strategies to ensure that each patient’s needs are
met, taking the necessary time to provide explanation and
hold discussion. Language is kept simple, and no more than
1 idea is communicated at a time. Facilitators consider factors such as educational level, emotional state (grief, depression, or anxiety), and physical condition (blindness, deafness) of the patient so that they employ the most appropriate
style and format of education for the sessions. Sessions are
held in the early morning or afternoon in quiet, private areas
in the facility or the patient’s own room. Educational material is available in several languages.
Overview of directive. As part of educating residents and
their designated substitutes, facilitators provide an overview
of the 5 sections of the LMD directive. The Introduction section (Table 1) states the reason why the directive is being
completed. Signing the directive revokes any previous documents, establishes this document as the latest expression of
wishes, and names the substitutes (power of attorney, proxy,
mandatory). The facilitator makes sure that the person understands what is stated in this section, and the importance
of the substitute decision makers’ role is discussed. Substitutes need to understand the person’s goals, values, and
JCOM September 2000 43
LET ME DECIDE
Table 2. Definitions of Terms Used in Let Me Decide Directive
The directive will only be published in this article and never excerpted, copied, sold, reproduced or
used again outside of the article in this edition of the journal. The article may not be sold with the
directive in it either.
Reprinted with permission from Molloy DW. Let me decide. Troy, ON: Newgrange Press; 1999.
choices, and need to be able to make these known to others,
if and when the need arises.
Next, facilitators explain the terms used in the personal
health care chart, on which the residents indicate the type of
care they would want if their condition was “reversible/
acceptable” and the type of care they would want if their
condition was “irreversible/intolerable.” For both conditions, residents are asked to choose the type of care they
would want in case of life-threatening illness (palliative, limited, surgical, or intensive) or in case of cardiac arrest (CPR
or no CPR) and type of feeding they would want (basic, supplemental, intravenous, or tube). The definitions of these
terms are listed in the Definition section of the directive
(Table 2). Facilitators explain these terms using many practical examples. For example, facilitators explain that surgery
might still be given if palliative care is requested: “If your hip
was broken and you had severe pain, surgery might be the
only way to relieve your pain.”
44 JCOM September 2000
Residents are reminded that they will be able to change
their choices and update their directives as often as they like;
this usually occurs about once a year or if there is a change in
their health. Facilitators show the place provided on the
directive for the updated information and explain the
process. The facilitator also explains the Signatures section,
which in addition to the signatures contains the names,
addresses, and telephone numbers of the family doctor, substitutes, and witnesses.
Development of personal statement. The LMD directive contains an area for the resident to describe in his/her own
words what for them constitutes an unacceptable level of
function. The facilitator starts by reading the introductory
phrase, “I consider an irreversible/intolerable condition to
be any condition…” and explains that the resident can
describe, in their own words, the level of disability they
would consider unacceptable or intolerable. The personal
Vol. 7, No. 9
OUTCOMES IN PRACTICE
statement usually describes an irreversible condition in
terms of function (eg, “loss of ability to communicate or perform activities of daily living such as dressing, washing, recognizing family and friends”).
To help residents formulate their personal statement, the
facilitators asks, “Consider what treatment you would want
if you were in good health with an acceptable quality of life
and suddenly you became ill with a life-threatening illness,
such as pneumonia or a bleeding ulcer, that could be completely cured without any lasting disability. What treatment
would you want in this situation?” They then ask, “Consider
what treatment choices you would make if you suffered a
severe brain injury and were in an irreversible coma, in a
persistent vegetative state, unconscious, unable to communicate or swallow, with no hope of recovery. Would you
want different treatment options than if you were healthy
and had a good quality of life?”
People are asked to complete phrases such as “As long as
I can… , I would accept this level of function and quality of
life. But when I can’t do… , then I would consider this an
unacceptable quality of life.” Facilitators ask, “From what
point on would you want to be kept comfortable and not
want technology to prolong your life?”
Facilitators emphasize that different people have different values and goals in life and are prepared to accept different disabilities. They use the following example:
Consider Beethoven and Picasso. Beethoven went
deaf, a tragic loss for a great composer. Hearing may
have been the most important sense for him. If he had
gone blind, it would have been less disabling. On the
other hand, if Picasso had gone blind, it would have
been devastating.
The facilitator repeats back what the resident has said, offering
examples of the consequences of their choices to make sure
their choices are consistent with their wishes and to ensure
that they understand and appreciate these consequences.
Facilitators document the content and outcomes of educational sessions in the medical charts. Concerns about peoples’ capacity to complete directives, specific strategies used
to explore and validate these concerns, names of the substitute decision makers, responses to educational sessions, conflicts, and follow-up plans such as referral to social workers,
clergy, or doctors are documented.
Step 3: Assess Capacity to Complete Directive
After residents are educated, facilitators use the Screening
Instrument to Assess Capacity to Complete an Advance
Directive (SIACAD) to assess capacity to complete the LMD
directive [28]. The SIACAD is a 24-item questionnaire that
assesses understanding of the purpose of the directive, meaning of terms used in the directive, and consequences of choices
Vol. 7, No. 9
Table 3. Questions Used to Assess Competency to Complete
an Advance Directive
Does this advance directive deal with people’s property?
Does this advance directive deal with people’s health?
Do proxies make decisions for people who are clear headed and able
to communicate?
Do proxies make decisions for people when they are in a coma?
Is it important that proxies understand the person’s health care wishes?
Do people usually recover completely from an irreversible illness?
Is Alzheimer’s disease usually considered a reversible illness?
Do people usually recover completely from a reversible illness?
Is pneumonia usually considered a reversible illness?
Can people make different treatment choices for reversible and irreversible conditions?
Do all four levels of care (for life-threatening illness) provide the same
kind of treatment?
Does palliative care usually include having surgery and being hooked
up to a breathing machine?
Do people who choose palliative care usually get transferred to the
intensive care unit?
Does limited care include palliative care?
Does intensive care mean that everything possible will be done to
treat a person?
Does intensive care mean comfort measures only?
Does basic feeding mean that people will be fed by tubes?
Does supplemental feeding include high energy supplements or extra
vitamins?
Does supplemental feeding usually include nasogastric tube?
Is cardiopulmonary resuscitation (CPR) used to restore someone’s
breathing or heartbeat?
Does “No CPR” mean that a person will be resuscitated if their heart
stops?
If people choose “No CPR,” will their heart and breathing eventually
stop?
Can people make a personal statement (in their directive) describing
what they consider an irreversible condition to be?
Do people who say “No blood transfusion” in their directive receive a
blood transfusion?
Reprinted with permission from Molloy DW, Silberfeld M, Darzins P,
Guyatt GH, Singer PA, Rush B, et al. Measuring capacity to complete
an advance directive. J Am Geriatr Soc 1996;44:660–4.
that can be made in the directive (Table 3). If the score indicates
the patient is incapable, next of kin are approached to help
develop a care plan. If the score indicates borderline capacity,
conditions that could influence cognition (eg, hearing loss,
delirium) are examined and treated. The facilitator reeducates,
particularly focusing on the areas where the patient answered
incorrectly, and then reassesses capacity. If patients are still
deemed incapable after reeducation and readministration of
the SIACAD, facilitators approach the next of kin to help develop a care plan consistent with the incapable person’s prior
JCOM September 2000 45
LET ME DECIDE
expressed wishes and values. If their wishes and values are
unknown, decisions are made that are consistent with their
best interests.
Step 4: Complete the Directive
Once the patient is deemed competent, choices are reviewed
and documented on the directive and the directive is signed
by the patient, substitute decision makers, and physician.
Managing the Directive
A systematic approach to managing directives ensures consistency and quick retrieval of medical information from residents’ charts. Original directives are kept in the medical
charts and marked “Original copy—do not remove from
chart.” Charts containing a directive are flagged with a
brightly colored sticker on the outside of the chart. Treatment
wishes for reversible and irreversible conditions for lifethreatening illness, feeding options, and cardiopulmonary
resuscitation are recorded in the doctor’s progress notes. All
directives are marked with the message “To attending physician: please transcribe this directive on the doctor’s orders.”
Notes on the doctor’s orders can also refer to the the directive
(eg, “See advance directive—please follow patient’s choices
expressed there”).
Additional copies of directives are kept at the front of
the chart and sent with transfer forms when residents are
moved to hospitals, clinics, or other institutions. When a
patient is transferred to hospital, the transfer records should
indicate that the patient has been transferred and that a
copy of the directive has been forwarded with them. If an
individual chooses not to complete a directive, a description
of the discussions, reasons for refusal, and follow-up is also
documented.
Directive Review
Facilitators review directives with residents annually or after
serious medical events, changes in health status, or any time
changes in directives are requested by the resident. Changes
(or “no changes”) are recorded on the original directive. If
major changes are requested, such as significant additions or
deletions to personal statements or changes to the personal
health care chart, it might be simpler to fill out new directives and obtain all required signatures using the original
protocol. Whenever changes are made to directives, physicians review them, substitute decision makers re-sign them,
and copies of the signed documents are provided to all parties. Old copies are discarded from medical charts.
When competent people with a completed directive become incompetent or experience a deterioration in their level
of function that meets their own definition of an “irreversible”
condition with an intolerable quality of life, this is noted on the
directive and medical chart. The updated directive states that
46 JCOM September 2000
this person is now incompetent, in an irreversible condition
with an unacceptable quality of life, based on their own personal statements. This change is reviewed by substitutes. The
wishes of the person while competent are honored and cannot
be overridden by substitute decision makers.
Some facilities have computerized systems for storing
patient information and would likely be adaptable to include directive review dates. Routine lists can provide upto-date information for scheduling these appointments. For
those facilities where manual tracking is more appropriate,
the day book or calendar system works best.
Program Evaluation
The advance directive program is evaluated using tools that
measure residents’ and families’ satisfaction with health care
received and their involvement in the decision making
process [32]. Reassessment of barriers to advance directive
use and learning needs for palliative care [33] over time help
to refine educational programs, modify specific strategies for
improving the implementation of the program, and introduce new options for customizing advance directives and
policies.
Cost of Program
For our program, the facilitator requires a commitment of
100% of a standard work shift for 6 to 8 months for nursing
homes with 160 to 250 residents. After initial implementation, facilitators usually work one-quarter time to maintain
the program—half a day in smaller homes (less than 200 residents) and a full day in larger homes (200 or more residents). The amount of time required to maintain the program will vary slightly depending on the admission rate.
The approximate estimated cost to provide education and
complete the directive is $113 CAD per resident. More residents are deciding to stay in the nursing home at the end of
life instead of transferring to a hospital. Extra funding will be
necessary to support their wishes and provide quality care to
residents who request palliation in nursing homes.
Conclusion
Successful implementation of directive programs requires the
integration of policies, education, directive completion and
capacity assessment strategies. A systematic approach by
trained and skilled facilitators is essential to successfully implement programs. Comprehensive directives and reliable programs ensure that competent people in long-term, acute care
facilities and in the community have their freedom protected
and maintain the ability to exercise their rights.
Authors’ address: Geriatric Research Group, Henderson Hospital, 711 Concession St., Hamilton, ON L8V1CM, Canada,
[email protected].
Vol. 7, No. 9
OUTCOMES IN PRACTICE
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Copyright 2000 by Turner White Communications Inc., Wayne, PA. All rights reserved.
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JCOM September 2000 47