C O L L A B O R A T I V E C A SE
Making Informed Choices: Care for Patients Lacking Decisional Capacity
By Wes Collins, BA, MA
The principle of autonomy, or self-determination, is a fundamental tenet of medical treatment in the United States, and a key consideration
when caring for patients who lack decisional capacity. Patients who are unable to make autonomous choices and lack decision-making
capacity (D-MC) are consequently not empowered to make their own healthcare decisions. Unfortunately, however, not all healthcare
providers assess D-MC formally and consistently.
This article will examine the concept of autonomy in the
healthcare setting, explore the development of a clinical assessment
tool, and present a collaborative approach to managing this patient
population efficiently.
Autonomy
The concept of autonomy carries with it significant ethical and
legal implications, and was proposed as early as 1914 in the case of
Schloendorff v. Society of New York Hospital1. In this case – issued by
the New York Court of Appeals– the plaintiff, Mary Schloendorff, was
admitted to New York Hospital and consented to an abdominal
examination under anesthesia to determine if a diagnosed fibroid
tumor was malignant. However, Schloendorff did not consent for
the removal of the tumor. The physician examined the tumor,
determined it was malignant, and then removed the tumor against
Schloendorff’s wishes. Following the court’s ruling, Justice Benjamin
Cardoza delivered an opinion that has become a classic statement
for a patient’s right to self-determination. Cordoza stated that “every
human being of adult years and sound mind has a right to
determine what shall be done with his own body.” 2
The Schloendorff case has proven to be significant not because
of the court’s decision, (the case focused on the liability of the
hospital for wrongful acts committed by surgeons using its facilities,
and the court neither found a violation of informed consent, nor
addressed the amount of information a patient needs in order to
exercise his or her right of self-determination) but because Justice
Cardoza explored for the first time the principle of autonomy.2
Respecting a patient’s autonomy requires, at minimum, the
acknowledgment of an individual’s right to have their own opinions,
make choices, and take actions based on personal goals and values.
Truly autonomous choices share the following three characteristics:
1) The choices are voluntary
2) The choices are not coerced
3) The choices are based on sound reasoning
With these factors in mind, the issue of decisional capacity and
respect for one’s autonomy are pivotal in developing an appropriate
plan of care for a patient.
Developing a Clinical Assessment Tool
The reality that not all organizations employ formal and
consistent methods when assessing D-MC may be largely
attributed to common misconceptions about D-MC (see Figure A),
M A N A G E M EN T
10 Common Misconceptions of
DEcision-making capacity4
1. D-MC and competency are the same
2. Lack of D-MC can be presumed when patients
go against medical advice
3. There is no need to assess D-MC unless patients
go against medical advice
4. D-MC is an “All or Nothing” phenomenon
5. Cognitive impairment equals lack of D-MC
6. Lack of D-MC is a permanent condition
7. Patients who have not been given relevant and
consistent information about their treatment
lack D-MC
8. All patients with certain psychiatric disorders
lack D-MC
9. Patients who have been involuntarily
committed lack D-MC
10. Only mental health experts can assess D-MC
Figure A
as well as a lack of formal assessment tools or universal formulas
available for determining a patient’s D-MC. In 2004, the Palliative
Care Services Department at Spartanburg Regional Healthcare
System (SRHS) in Spartanburg, SC, identified the need for a clinical
tool to properly assess D-MC, and began to develop a solution.
A Team Effort
The Palliative Care Services Department drove the
development of a clinical assessment tool, but also recognized that
there are a variety of specialists and members of the medical staff
that interact with patients lacking D-MC, and are influential in
caring for this patient population – and thus could contribute
valuable insights into assessing D-MC in different phases of care
and in different care settings. Therefore the first step in the
development process was to solicit these individuals’ thoughts as to
what an effective clinical assessment tool should include, and what
specific criteria should be taken into consideration.
continued on page 4
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Making Informed Choices: Care for Patients Lacking Decisional Capacity (continued from page 3)
The Palliative Care Services Department also recognized that
those outside the medical care team could have critical perspectives
on a tool to assess D-MC. Geriatric patients are a key demographic
for decisional capacity issues, and thus the geriatric psychiatry
department was instrumental in developing the criteria used in the
assessment tool. Due to the legal ramifications surrounding D-MC,
the organization’s legal counsel was asked to review every aspect of
the tool’s development as well to ensure that it would protect the
patient’s right to autonomy and decisional capacity. The behavioral
health department also provided valuable feedback, and the
organization’s director of case management helped mold the tool
by providing insight as to what criteria would be critical to evaluate
a patient’s degree of preparedness for discharge or transition. The
ethics committee at SRHS also provided a thorough review of the
tool, as assessing D-MC carries significant ethical implications.
The Anatomy of the Tool
South Carolina law states that in order to designate a patient as
lacking decisional capacity, two physicians involved in the patient’s
plan of care must indicate that the patient is incapable of making
medical decisions. In accordance with this law, the Palliative Care
Services Department at SRHS developed a clinical assessment tool
consisting of a single page, pre-printed progress note with two
identical columns – one per physician – that is part of the patient’s
medical record (see Figure B).
The form is designed so that the attending physician completes
one side of the progress note, and the second side of the form is
completed by a second physician that is involved in the patient’s
plan of care. Each side of the form has two options accompanied by
check boxes – “This patient DOES possess the decisional capacity
to make healthcare decisions for self,” or “This patient DOES NOT
meet ALL of the criteria for decisional capacity, therefore is not able
to make healthcare decisions for self. Furthermore, it is my opinion
that due to the patient’s medical condition(s), this lack of capacity is
not likely to change in the immediate future.”
If the physicians indicate the latter, they must then select the
criteria not met for decisional capacity, and their orientation to
person, place, or time. These criteria include:
• Understands the nature of his/her illness
• Ability to understand that decisions need to be made
• Ability to communicate a decision
• Ability to understand and use information
logically to reach a decision
• Ability to be realistic in decision making (i.e. to understand
the consequences of a decision)
Space is then allotted for the physicians to provide their
medical rationale for determining that the patient does not possess
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C A SE M A N A G E M EN T
decisional capacity. Once completed, the physician then signs the
form. A completed and signed form from both physicians is
considered documentation verifying that the patient is non-
decisional, and thus empowers a family member or friend to be
identified as a legal surrogate, responsible for the treatment
decisions of the patient.
A Collaborative Approach to Care
At SRHS, the Palliative Care Services Department and the
organization’s case managers not only collaborated in developing
an assessment tool, but continue to use this tool collaboratively on
a daily basis. Case managers are a vital part of palliative care’s
protocol for assessing patients and caring for those who lack D-MC.
SRHS’s case management model consists of both nurses (RNs)
“Every human being of adult
years and sound mind has
a right to determine what shall
be done with his own body.”
and master’s-prepared social workers. Case managers assess any
patient being transitioned to a skilled nursing facility (SNF) who
shows signs of decreased D-MC by utilizing the clinical assessment
tool. Medical directors at area SNFs have requested that patients be
assessed for D-MC prior to their transition to the SNF, due to the
fact that often the SNFs are short-staffed and may only have one
primary physician on staff. Since the law requires two physicians to
designate a patient as lacking D-MC, assessing a patient’s D-MC
prior to his or her transition on to a SNF empowers SNFs who may
be short-staffed to still continue on with the appropriate plan of
care for the patient, and make the necessary medical decisions with
the consent of the patient’s legal surrogate. Empowering the SNF to
comply with these shared decisions also reduces the amount of
hospital readmissions for services and treatments such as
ventilators, because alternate care plans can be provided in the SNF.
Another one of case management’s key responsibilities in the
care process for patients lacking D-MC involves utilization review
(UR), and coordinating UR with the appropriate plan of care for the
patient. UR is generally a standard function of case management in
many organizations; however, one factor that may differentiate the
UR process for patients lacking D-MC from the standard UR
continued on page 6
 w w w . a c m a w e b . o r g

SPARTANBURG
Regional Healthcare System
0SRMC 0SHRC 0BJW

PROGRESS NOTE ADDRESSING DECISIONAL CAPACITY

Based upon my observation and involvement with this patient, it is my medical opinion that

Account Number:
(Name of Patient)

Check ONE of the following statements

This patient DOES possess the decisional capacity to make This patient DOES possess the decisional capacity to make
healthcare decisions for self. healthcare decisions for self.

This patient DOES NOT meet ALL of the criteria for decisional
capacity, therefore is not able to make healthcare decisions
for self. Furthermore, it is my opinion that due to the patient’s
medical condition(s), this lack of capacity is not likely to change
in the immediate future.
This patient DOES NOT meet ALL of the criteria for decisional
capacity, therefore is not able to make healthcare decisions
for self. Furthermore, it is my opinion that due to the patient’s
medical condition(s), this lack of capacity is not likely to change
in the immediate future.

Criteria not met: Criteria not met:

Oriented to person place time Oriented to person place time
Understands the nature of his/her illness Understands the nature of his/her illness
Ability to understand that decisions need to be made Ability to understand that decisions need to be made
Ability to communicate a decision Ability to communicate a decision
Ability to understand and use information logically to Ability to understand and use information logically to
reach a decision reach a decision
Ability to be realistic in decision making (i.e. to Ability to be realistic in decision making (i.e. to
understand the consequences of a decision) understand the consequences of a decision)

Progress Note Progress Note

(Attending Physician) (Date) (Second Physician involved in Care) (Date)

NOTE: A Psychiatric consult is NOT required. This form requires the signature of TWO PHYSICIANS! A Progress or Consult Note
should be written regarding both the patient’s medical condition and mental capacity.
The completed form will be forwarded at discharge to the extended care facility.

Patient Label

1691 (11-04)

Figure B

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Making Informed Choices: Care for Patients Lacking Decisional Capacity (continued from page 4)
process is the frequency and amount of communication involved.
Due to the fact that the patient is not able to make medical
decisions and provide input during the process, the organization’s
case managers, Palliative Care Services Department, the patient,
and the patient’s family, must work together to communicate in
order to ensure that the plan of care is in line with the patient’s
wishes or values.
SRHS’s case managers are also responsible for securing any
necessary outside resources, such as ancillary service providers and
SNFs, as mentioned above. Patients following a more medically
complex plan of care often require case management and palliative
care to work closely together when making arrangements with
outside providers. The collaboration between case managers and
palliative care helps determine the best plan of care for the patient,
and ensures proper utilization of resources.
Challenges Encountered
As with any process or initiative, there are a number of
challenges encountered when developing a plan of care for patients
who lack decisional capacity, perhaps the greatest of which is
communication. Communication between all parties involved in
the patient’s care is central to developing and properly executing an
effective care plan.
The absence of an advanced
directive indicating a proxy
or a specific legal surrogate
often establishes a shared
power, which requires a
consensus among the family.
The American Academy of Neurology (AAN) states that
“life-sustaining treatment decisions in patients who have lost their
decision-making capacity must first and foremost respect the
autonomy of the patient and/or the immediate family.”3 This
concept proves to be particularly challenging in terms of
communication when working with patients who lack both the
ability to communicate their wishes, and formal documents – such
as legal advanced directives – which clearly dictate their wishes and
values. In such cases, medical decisions must be made based on the
interpretation of the immediate family. Such cases are especially
challenging when large families are involved, as there are varying
C A SE M A N A G E M EN T
interpretations and ideas as to what course of action is best for their
loved one.
Patients’ families are also often unaware of the legal
implications surrounding the care of their loved one. This proves to
be a major challenge in determining consent for treatment plans, as
a patient’s son or daughter might believe that as the eldest child,
they are entitled to be the legal surrogate. This is not always the
case, and laws and statutes dictating the priorities of who is
appointed legal spokesperson or surrogate vary by state. In fact, the
absence of an advanced directive indicating a proxy or a specific
legal surrogate often establishes a shared power, which requires a
consensus among the family.
Conclusion
When developing a plan of care for patients lacking D-MC,
consideration must be given to all those that will be involved in the
patient’s treatment. Every member of the care team – from the case
managers responsible for the patient’s utilization, to his or her
attending physician – must provide input and feedback as the
patient’s plan is crafted in order for treatment to be truly effective
and as seamless as possible.
Careful consideration must also be given to the legal, ethical,
and moral implications involved with patients without D-MC. Legal
counsel, risk management, ethics programs, psychiatric programs,
and physician leaders are all valuable and necessary resources to
consult when developing a plan of care for patients lacking D-MC.
SRHS’s collaborative care model for patients lacking D-MC not
only provides quality patient-centered care for the patient, but also
supports the patient’s autonomy and right to self-determination.
Furthermore, by developing a tool that adequately assesses D-MC,
the staff at SRHS has ensured that due process is followed in
designating patients as not possessing D-MC, while acting in the
patient’s best interest – clinically, morally, and ethically.
Wes Collins BA, MA, has been the Advance Care Planning and
Clinical Ethics Coordinator at Spartanburg Regional Healthcare
System since 2003. He earned his MA from Oral Roberts University
in Tulsa, Oklahoma. Wes has 30 years of experience in the areas
of advance care planning, pastoral care and clinical chaplaincy,
counseling, and clinical ethics.
References
1
Schloendorff v. Society of New York Hospital, 211 N.Y. 125,
105 N.E. 92, (1914).
2
A History and Theory of Informed Consent, Ruth R. Faden & Tom L.
Beauchamp, P.123-124.
3
American Academy of Neurology, Position Statement, 1988.
4
“Ten Myths About Decision Making Capacity,” Journal of American Medical
Directors Association, July/August 2004.