Substitute Decision Making: Intentions & Limitations and - - PowerPoint PPT Presentation

Substitute Decision Making: Intentions & Limitations and Illinois POLST

Presented by: Birgitta Sujdak Mackiewicz, PhD OSFHC Saint Francis Medical Center & Children’s Hospital of Illinois, University of Illinois College of Medicine, Peoria, and POLST Illinois

Objectives

• Define decisional capacity and informed consent
• Differentiate between giving informed consent and expressing

a preference

• Identify limitations for Surrogate Decision Makers/Guardians

with regard to life sustaining treatment

• Review POLST form

Decisional Capacity and Informed Consent

• Decisional Capacity is the “ability to understand and appreciate

the nature and consequences of a decision” (755 ILCS 40)

A patient may lack capacity if they are unable to:

• 1. Express or communicate a choice or preference
• 2. Appreciate their situation & its consequences
• 3. Understand & process relevant information
• 4. Give reasons or support for his or her decisions
• 5. Demonstrate evidence of risk/benefit reasoning about treatment &

discharge decisions

• 6. Arrive at a clear decision
• 7. Remember a decision or choice which they recently made

Decisional Capacity and Informed Consent

• Informed consent is a process which ordinarily

involves communication between a patient/legal decision maker & physician & includes the following elements:

• The patient’s diagnosis & prognosis if known;
• The purpose & nature of the proposed treatments or

procedures;

• The risks, benefits & consequences of proposed

treatments or procedures;

• The risks & benefits of reasonable alternatives, including

no treatment at all. Bemski, K.M. (2006)

Decisional Capacity and Preferences

• Decisional capacity can wax and wane and is assessed in light of

a particular decision.

• Patients with Guardians may be capable of making some

decisions.

• Those who lack capacity for particular (or all) decisions may still

have strong preferences and values. These should be elicited if they are unknown and the patient included in decisions as possible and appropriate.

• Ethical dilemmas occur where there are values in tension:
• Respect for patient preferences vs. patient’s best interest
• Respect for patient independence/autonomy vs. patient safety

Decisional Capacity and Preferences

• The role of a substitute decision maker is to give informed

consent, to understand the options, benefits/risks, etc.

• Patient preferences may be overridden if there is justification.
• Not overriding patient preferences may actually be

disrespectful and/or harmful to the patient.

• The substitute decision maker IS the person responsible for

making the decision. Otherwise what is their role?

• It may seem easier to override preferences with regard to non-

medical decisions or medical decisions that are not end of life decisions.

• Exquisite care should be taken in making end of life decisions.

Decisional Capacity and Preferences

• A patient who lacks decisional capacity may say they want

CPR or “everything done” when this could be harmful, not aligned with their values, not in their best interest, or simply not beneficial.

• A patient’s previous expression of preferences and values may

no longer reflect the current situation. (If a patient had capacity at one time the same holds true with regard to their earlier decisions and statements.)

Decisional Capacity and Preferences

• Health Care Professionals do have the patient’s best interests

in mind, but they may use clumsy or offensive language suggesting that a patient doesn’t have a good quality of life. Give them the benefit of the doubt, educate, speak up, and be an advocate.

• When presented with a decision ask, “What do you hope to

achieve by that?” Or, “On what are you basing that recommendation?” Or “What are you trying to say when you say you don’t recommend X because the patient won’t have quality of life?”

• Articulate goals and values and ask what treatment course is

most likely to achieve those goals. Recognize that some goals may be unattainable.

Substitute Decision Makers

• Power of Attorney for Health Care may make any decision

the patient could make with no limitations, unless patient has indicated limitations. The POA should use knowledge of patient wishes, values, and goals. When these are unknown POA utilizes substituted judgment or the best interest standard. 755 ILCS 45

• Health Care Surrogate may make health care decisions on

behalf of a patient who lacks decisional capacity (using knowledge, substituted judgment, and best interest). They may not make end of life decisions unless the patient has a qualifying condition. Only then are empowered to consent to withhold or withdraw life-sustaining treatment. 755 ILCS 40/1

Life Sustaining Treatment

• "Life-sustaining treatment" means any medical

treatment, procedure, or intervention that, in the judgment of the attending physician, when applied to a patient with a qualifying condition, would not be effective to remove the qualifying condition or would serve only to prolong the dying process. Those procedures can include, but are not limited to, assisted ventilation, renal dialysis, surgical procedures, blood transfusions, and the administration of drugs, antibiotics, and artificial nutrition and hydration. 755 ILCS 40

What about CPR/DNR?

• Cardiopulmonary Resuscitation (CPR) is not considered

life sustaining treatment as it is provided when a patient is in full arrest. A patient who is in full arrest has died.

• CPR seeks to restore life, not sustain it.
• Thus, a Surrogate, including a guardian, may consent to

a DNR order regardless of whether there is a qualifying condition.

• However, OSG requires that there be a qualifying

condition present for a DNR when the guardian is a state guardian.

• DNR =/= Do Not Treat. It only applies when the patient’s

heart and breathing have stopped.

Qualifying Condition

"Qualifying condition" means the existence of one or more of the following conditions in a patient certified in writing in the patient's medical record by the attending physician and by at least one other qualified physician: (1) "Terminal condition" means an illness or injury for which there is no reasonable prospect of cure or recovery, death is imminent, and the application of life- sustaining treatment would only prolong the dying

• process. 755 ILCS 40

Qualifying Condition

(2) "Permanent unconsciousness" means a condition that, to a high degree of medical certainty, (i) will last permanently, without improvement, (ii) in which thought, sensation, purposeful action, social interaction, and awareness of self and environment are absent, and (iii) for which initiating or continuing life-sustaining treatment, in light of the patient's medical condition, provides only minimal medical

• benefit. 755 ILCS 40

Qualifying Condition

(3) "Incurable or irreversible condition" means an illness or injury (i) for which there is no reasonable prospect of cure or recovery, (ii) that ultimately will cause the patient's death even if life-sustaining treatment is initiated or continued, (iii) that imposes severe pain or otherwise imposes an inhumane burden on the patient, and (iv) for which initiating or continuing life-sustaining treatment, in light of the patient's medical condition, provides only minimal medical benefit. 755 ILCS 40

Qualifying Condition

• The determination that a patient has a qualifying

condition creates no presumption regarding the application or non-application of life-sustaining

• treatment. It is only after a determination by the

attending physician that the patient has a qualifying condition that the surrogate decision maker may consider whether or not to forgo life-sustaining

• treatment. In making this decision, the surrogate

shall weigh the burdens on the patient of initiating or continuing life-sustaining treatment against the benefits of that treatment. 755 ILCS 40 (emphasis added)

POLST: Practitioner Orders for Life Sustaining Treatment

• POLST is VOLUNTARY. It cannot be required for admission or

treatment.

• A tool for patients, POAs, and Health Care Surrogates that

documents the results of a discussion with a medical provider about goals of care.

• A medical order that documents wishes for treatment at this

point in time; provides guidance to emergency medical personnel; usually completed in a medical setting

• Is designed for those who with advanced illness or very frail –

at any age. “Would you be surprised if the patient died within the next year?”

• May also be used when DNR order is desired in tandem with

life sustaining treatment.

POLST Form

3 Primary Medical Order Sections

• A. CPR for Full Arrest
• Yes, Attempt CPR
• No, Do Not Attempt CPR (DNR)
• B. Orders for Pre-Arrest Emergency
• Full Treatment
• Selective Treatment
• Comfort Focused
• C. Medically Administered Nutrition
• Acceptable
• Trial Period
• None

POLST

• POLST is not intended for persons with chronic, stable

disability, who should not be mistaken for being at the end of life.

• Exceptions: may be considered for patients for whom CPR

could cause disproportionate harm or on whom CPR would not work.

• Can be signed by the patient’s decision maker if the patient

lacks decision-making capacity.

• POLST may be revised or revoked at any time. Should be

reviewed regularly.

POLST and Surrogate Decision Makers

• Other than DNR a Surrogate decision maker may

NOT consent to other treatment limitations if the patient does not have a qualifying condition.

• Thus a patient who has a surrogate decision maker

could not have a POLST with DNR - Selective Treatment or DNR – Comfort-Focused Treatment chosen without documentation of a Qualifying Condition.

Must CPR or life sustaining treatment always be provided if requested?

• No.
• A physician cannot be compelled to provide CPR if it

is medically contraindicated:

• won’t restore sustainable cardiopulmonary function
• or the risk of harm would exceed the potential benefit

OR

• If the treatment will cause disproportionate harm
• NOT based on the patient’s quality of life

References & For more info…

• Bemski, K.M. (2006) Informed consent-part I. In S.

Killion & K. Dempski (Eds.), Quick look nursing: Legal and ethical issues (p. 42-43). Sudbury, MA: Jones & Bartlett.

• Appelbaum, P., Assessment of Patients’

Competence to Consent to Treatment, N Engl J Med (2007) 357; 18: 1834-1840.

• See the next slides from POLST Illinois
• Go to: http://www.polstil.org

Thanks to Julie Goldstein, MD Chair, POLST Illinois Committee, Illinois Hospice and Palliative Care Organization Advance Care Planning, Ethics and Palliative Care Educator, Advocate Health Care

Illinois POLST

Practitioner Orders for Life-Sustaining Treatment

• Note that these slides are developed as

clinical guidance for the POLST paradigm and should NOT be construed as medical nor legal advice.

• For answers to legal questions, check with

your own organizational or personal legal counsel.

Disclaimer

Advance Care Planning Over Time

FIRST PHASE: Complete a POA. Think about wishes if faced with severe trauma and/or neurological injury. NEXT PHASE: Consider if, or how, goals

• f care would change if

interventions resulted in bad outcomes or severe complications. LAST PHASE: End-of-Life planning - establish a specific plan of care using POLST to guide emergency medical treatments based on goals.

POLST and Advance Care Planning

POLST

• Medical order that documents

wishes for treatment at this point in time; provides guidance to emergency medical personnel; usually completed in a medical setting

• Is designed for those who with

advanced illness or very frail – at any age.

• Can be signed by the patient’s

decision maker if the patient lacks decision-making capacity.

Advance Care Planning

• Everyone18 years and older

is encouraged to have

• Legal document completed in

advance of health issues that allows a person to:

• make general statements

about his/her healthcare wishes in the future, and

• appoints a healthcare

decision maker to speak on someone’s behalf.

• The POLST Paradigm is the ideal approach to end-of-life
• planning. It promotes quality care through informed end-of-

life conversations and shared decision-making

• The POLST form is used to document the conversation. It

should not be used as a check-box, or a replacement for an informed conversation between patients, families and providers.

The POLST Paradigm is a Process – Not a Form

Is intended for persons of any age for whom death within the next year would not be unexpected (the “Surprise Question”)

• This includes patients with advanced

illness or frail elderly POLST is not intended for persons with chronic, stable disability, who should not be mistaken for being at the end of life. Exceptions? The POLST Paradigm:

The POLST Document

3 Primary Medical Order Sections

• A. CPR for Full Arrest
• Yes, Attempt CPR
• No, Do Not Attempt CPR (DNR)
• B. Orders for Pre-Arrest Emergency
• Full Treatment
• Selective Treatment
• Comfort Focused
• C. Medically Administered Nutrition
• Acceptable
• Trial Period
• None

The IDPH Uniform POLST Document

Section “A”: Cardio-Pulmonary Resuscitation

• There are multiple kinds of emergencies. This section only addresses a

full arrest event (no pulse and not breathing), and answers “Do we do CPR or not?”

• NOTE! Patients can use this form to say YES to CPR, as well as to

refuse CPR.

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Code Status – only when pulse AND breathing have stopped

Section “B”: Medical Interventions

30

• Three categories defining the intensity of treatment when the patient has requested DNR

for full arrest, but is still breathing or has a pulse.

• Full – all indicated treatments are acceptable
• Selective – no aggressive treatments such as mechanical ventilation, but willing to be

in hospital for reversible issues

• Comfort-Focused – patient prefers symptom management and no transfer if possible

Use this line selectively for emergency instructions so as not to confuse first responders;

If choosing “Attempt CPR” in Section A, Full Treatment is required in Section B.

Why?

If patient is in pre-arrest and measures are withheld in Section B, and then patient progresses to cardiac arrest, where those same withheld measures are now employed, delay in treatment will compromise patient.

Section “B”: Medical Interventions

Yes to CPR in Section A requires Full Treatment in Section B

Conversely, Selection of “Full Treatment” in Section B does NOT require “Attempt CPR” in Section A.

Why?

• Section B options are for Medical Emergencies aside from

cardiac arrest.

• A person may wish to be intubated in case of Respiratory

Distress, but would not want that treatment in the context of Cardiac Arrest (success rates may be very different in those different contexts!).

Section “B”: Medical Interventions

Selection of Full Treatment in Section B does NOT require CPR in Section A

• Regardless of the option selected in section B,

comfort care is always provided

• To clarify: if a patient is choking, suction,

manual treatment of airway, Heimlich maneuver would be implemented: Choking is NOT COMFORTABLE!!

Section “B”: Comfort Care

Section “A” choices influence medical interventions in Section “B”

Yes! Do CPR Comfort-Focused Treatment

Selective Treatment

DNR: No CPR

Full Treatment

• r
• r

Full Treatment

Section A Section B

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Section “C”: Medically Administered Nutrition

• Medically Administered Nutrition can include temporary tubes

(nasogastric or TPN), or permanent placement feeding tubes (such as PEG or J-tubes).

• A trial period may be appropriate before permanent

placement, especially when the benefits of tube feeding are unknown, or when the patient is undergoing other types of treatment where nutritional support may be helpful.

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Section “D”: Documentation of Discussion

• The form can be signed by:
• The patient
• The agent with a POAHC (when the patient does not have decisional

capacity)

• The designated Healthcare Surrogate
• when the patient does not have decisional capacity and has no

POAHC or applicable Advance Directive

• a parent of a minor child is a surrogate
• a guardian is also a surrogate

• According to IDPH, “one individual, 18 years of

age or older, must witness the signature of the patient or his/her legal representative’s consent... A witness may include a family member, friend or health care worker.”

• The witness CANNOT be the practitioner who

signs the order.

Section “D”:

Documentation of Discussion

When the form is completed by a person

• ther than the patient, it should be reviewed

with the patient if the patient regains decisional capacity to ensure that the patient agrees to the provisions.

Section “D”:

Documentation of Discussion

• Before turning to a POAHC or Surrogate, physician to assess and

document Decisional Capacity.

• The patient may be able to make some decisions even if s/he can’t

make all decisions. – Patients who are minors should be offered the opportunity to participate in decision-making up to their level of understanding – Studies consistently show that decisions made by others are more aggressive and not as accurate as what the patient would choose for him/herself.

Decisional Capacity

It’s not all or nothing

Quick Refresher on Decision-Maker Priority

Start at the top and move down the list

1. Patient

• Do not move on until patient has been evaluated by the attending

physician who documents the patient lacks decisional capacity and is not expected to regain capacity in time to make this decision 2. Power of Attorney for Healthcare

• Patient has completed and signed this Advance Directive

3. Surrogate (when you can’t speak to patient and no POA)

• Court-Appointed Guardian
• Spouse/ Civil partner
• Adult children
• Parents
• Adult siblings
• Grandparents/Grandchildren
• Close Friend
• Guardian of Estate

Section “E”: Signature of Practitioner

41

• The form can be signed by the (a) attending physician,

(b) a licensed resident who has completed at least one year

• f training, (c) a physician assistant, or (d) an advanced

practice nurse.

• If more than one person shares primary responsibility for

the treatment and care of the patient, any of those persons may sign the order.

• Patient name
• Resuscitation orders (Section “A”)
• 3 Signatures

– Consent by patient or legally recognized representative – Witness – Practitioner

• Date
• All other information is optional
• Pink paper is recommended to enhance visibility, but

color does not affect validity of form

• Photocopies and faxes ARE acceptable.

Requirements for a Valid Form

Reverse Side: Guidelines and Instructions

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Completion of the form is always voluntary.

• Substitute decision-maker is responsible to honor the

patient’s wishes.

• Extreme care should be exercised if the POAHC or

Surrogate wishes to reverse the direction of care previously established by the patient

– For example, the patient requested Comfort-Focused or Selective Treatment, but the POAHC or Surrogate wants Full Treatment – Changes to a form should be based on evidence of the patient’s wishes

• “Convince me.”

What happens if Substitute Decision-Maker does NOT want staff to follow POLST Orders?

For additional information contact: info@POLSTil.org 1-855-765-7845 Polstil.org (Illinois) Polst.org (National)

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