Advance Care Planning and Goals of Care by keara


									Advance Care Planning and
     Goals of Care
   Steven Zweig, MD, MSPH
 Family and Community Medicine
    MU School of Medicine
        The key parts of the chapter

• Purposeful observation
• Purposeful conversation
• Individualized care requires the facility
  service to fit the resident, rather than the
  resident goals and needs fitting the facility

• 24% of Americans will die in nursing
  homes – 28% in Missouri.
• 30% of people admitted to the nursing home
  will die within one year.
    Four step process for Patient-Centered

•   Identifying patient preferences
•   Communication about medical prognosis
•   Defining goals of care
•   Implementing a management plan
    consistent with those goals
              Care of the Dying

• Identifying patient preferences (Advance care
• Communication about medical prognosis
  (purposeful observation)
• Defining goals of care (purposeful
• Implementing a management plan consistent with
  those goals (caring for the dying resident)

• Advance care planning -- The process of identifying the
  resident’s personal preferences and values, which - in
  conjunction with his/her current and anticipated medial
  status and goals - provide the basis for making decisions
  about end-or-life care.
• Palliative -- Medical, nursing and support services are
  aimed at ensuring maximum comfort and dignity during
  the last stages of life. The emphasis is on controlling pain,
  relieving symptoms, preserving support for resident and
• Prognosis --The projected outcome of a disease; the life
                    Definitions (cont.)

• Advance directive -- This          • Durable Power of
  term may refer to any direction,     Attorney for Health
  either oral or written, made in      Care (DPAHC)--A legal
  advance to losing decisional         document in which a competent
  capacity by an individual            person gives another person
  regarding his/her health care        (called an attorney-in-fact) the
  treatment wishes. Written            power to make health care
                                       decisions for him or her if
  advance directives may include
                                       unable to make those decisions.
  living wills, health care            A DPA can include guidelines
  treatment directives, and            for the attorney-in-fact to
  durable powers of attorney for       follow in making decisions on
  heath care.                          behalf of the incompetent
                  Definitions (cont.)

•    Surrogate -- an agent who acts on behalf of a resident
     who lacks decisional capacity to participate in a
     particular decision; an appropriate surrogate may be:
    – Designated by the resident (e.g., in a health care
        treatment directive, living will an/or durable power of
    – The adult who is most involved with the resident and
        most knowledgeable about the resident’s personal
        values and preferences; or designated by a court (e.g.,
        a guardian)
                     Missouri Law

• Missouri’s basic living will legislation was passed in 1986.
  The statutory definition of “death prolonging procedures”
  excluded artificial nutrition and hydration.
• After Cruzan in 1991, this statute was revised permitting a
  durable power of attorney for health care decisions and
  permitted the withholding of artificial nutrition and
  hydration only if the person granted that power to the
           Goals of Advance Care Planning

• Ensure that clinical care is in keeping with the patient’s
  preferences when the patient has become incapable of
  decision making
• Improve the health care decision making process
   – Facilitate a shared decision making process
   – Allow surrogate to speak on behalf of patient
   – Respond with measured flexibility to unforeseen
     clinical situations
   – Provide education regarding the issues that surround
     death and dying
     Goals of Advance Care Planning (cont.)

• Improve patient outcomes
  – Improve the patient’s well-being by reducing the
    frequency of over treatment and under treatment
  – Reduce the patient’s concerns regarding the possible
    burden placed on family and significant other people

     • Teno JM, Nelson HL, Lynn J. Advance care planning:
       priorities for ethical and empirical research [special
       supplement]. Hastings Center Report 1994,24:S32-36.
      Advance Directive - Disadvantages

• Neither physician nor         • May violate value of
  patients likely to bring up     “sanctity of life”
• Terminology re: patient       • Could be used to inappro-
  status and interventions        priately withdraw care
  vague                         • May fail to express
• May not be known or             patient’s current wishes
  available when needed         • May reduce physician
• Difficult to know when to       authority over treatment
  enforce                         decisions
       Advance Directive - Advantages

• Promotes physician-          • Reduces potential for
  patient-family                 family strife over
  communication                  treatment decisions
• Extends patient self-        • Increases physician
  determination                  confidence in decisions
• Affords legal security for   • Lowers costs by with-
  physicians                     holding unwanted
• Relieves patients anxiety      treatments
  about unwanted treatments
    Health Care Surrogate - Advantages

• Can serve as extension of   • This person may be most
  patient’s autonomy            knowledgeable about
• Can respond to changes        patient’s wishes
  and ambiguities better      • Reduces number of
  than living will              interested parties to whom
• Formalizes common sense       physician must respond
  approach to patient care
  Health Care Surrogate - Disadvantages

• May not have discussed    • May not represent a
  with patient                durable choice
• May not accurately        • May have ulterior motives
  anticipate or represent     or be subject to influence
  patient’s wishes            of others
• May create an over-       • May demand medical
  whelming psychological      treatment with no hope of
  burden                      benefit
When should end-of-life discussions be initiated?

Urgent Indications             Routine Indications
• Imminent death               • Discussing prognosis
• Talk about wanting to die    • Discussing treatment with
• Inquiries about hospice or     a low probability of
  palliative care                success
• Recently hospitalized for    • Discussing hopes and
  severe progressive illness     fears
• Severe suffering and poor    • Physician would not be
  prognosis                      surprised if patient died in
                                 6-12 months
 Regulatory Compliance for Advance Directives
• Federal requirement
   – “Inform and provide written information… concerning
     the right to accept or refuse medical or surgical treat-
     ment and …formulate an advance directive.” (F 156)
• Surveyor guide (42 CFR 489.102)
   – Provide written information about rights under state law
   – Document whether or not has advance directive (AD)
   – Don’t discriminate based on whether has one or not
   – Ensure compliance with AD under state law
   – Provide staff education re policies on AD
   – Provide for community education
 Regulatory Compliance for Advance Directives

• Facility is not required to provide care that
  conflicts with an advance directive or implement
  an AD the provider cannot implement as a matter
  of conscience and state law allows such objection
• Resident or guardian shall be informed annually of
  facility policies re emergency and life sustaining
  care and right to treatment decisions – which if
  AD present should be reviewed annually with
  resident or proxy      (19CSR 30-88.010 (9))
       Goals of Care in the Nursing Home

• Four treatment goals are identified in the Resident
  Assessment Instrument User’s Manual Version 2.0
   –   Rehabilitation
   –   Maintenance
   –   Prevention
   –   Palliative Care
• Care should be consistent with resident’s goals; if
  condition changes, goals must be again reviewed
  and changed to address the needs of the resident
  Ongoing Assessment and Care Plan Revision

• Assessment during the early end-of-life period
  (ex. Resident chooses to not go to the dining
• Assessment throughout all stages (ex.
  Identification and treatment of pain and
• Assessment in the imminent death stage (ex. Keep
  comfortable without pushing nutrition and
                 Goals of Care

• Defining quality of life
  – As you look into your future life, what do you
  – Have you thought about what you would like
    the last phase of your life to be like?
  – What is most important for you during that
             Goals of Care (cont.)

• Residents without Decision Making Ability
  – MBC Document
     • “Surrogates recognized by providers/facilities and
       not appointed by resident’s advance directive or
       court order should share in the decision making
       process with the physician, family, and
       representatives of the facility”
  – Ethics consultation
             Goals of Care (cont.)

• Shaping care and settings goals
  – The interdisciplinary team can make better
    decisions with the following information:
     • The clinical condition and prognosis
     • The personal beliefs and social views (resident or
       surrogate derived)
 What to include in most end-of-life discussions?

• Goals of treatment
  – Relative emphasis on life prolongation
  – Relative emphasis on quality of life
• Specifics - range of interventions
  – Advance directives: living will, health care proxy
  – Do not attempt resuscitation (DNR) orders
  – Other therapies: mechanical ventilation, tube feeding,
    antibiotics, dialysis, hospitalization
  – Palliative care: pain and other symptoms, relief of
    psychosocial/spiritual suffering, unfinished business
Representative questions to ask: Scripts on
            describing Goals

• Given the severity of your illness, what is
  most important for you to achieve?
• How do you think about balancing quality
  of life with length of life in terms of your
• What are your most important hopes?
• What are your biggest fears?
   Representative questions to ask: Advance

• If you are unable to speak for yourself, who
  would be best able to represent your views
  and values? (health care surrogate)
• Have you given any thought to what kind of
  treatment you would want (and not want) if
  you become unable to speak for yourself in
  the future? (advance directive)
    Representative questions to ask: DNR

• If you were to die suddenly, that is, you stopped breathing
  or your heart stopped, we could try to revive you by using
  cardiopulmonary resuscitation (CPR). Are you familiar
  with CPR? Have you given thought as to whether you
  would want it?
• Given the severity of your illness, CPR would likely be
  ineffective. I would recommend that you choose not to
  have it, but that we continue all potentially effective
  treatments. What do you think?
Representative questions to ask: Palliative Care -

• Have you ever heard of palliative care (hospice)?
  What has been your experience with it?
• Tell me about your pain. Can you rate it on a 10-
  point scale?
• What is your breathing like when you feel at your
  best? How about when you are having trouble?
• Intensive Pathway. Life prolongation is the prime goal,
  with maintenance of physical and cognitive function
  second and maximization of comfort third. This translates
  into all medically indicated procedures, including
  cardiopulmonary resuscitation, intubation, and ICU care.
• Comprehensive Pathway. Prime goal is maintenance of
  physical and cognitive function, with prolongation of life
  second and maximization of comfort third. Attempted
  CPR would be excluded, as would ICU care, because both
  of these interventions have a low probability of success
  and, when they do not result in death, commonly result in
  functional decline.
• Basic Pathway. Prime goal is maintenance of physical and
  cognitive function, with maximization of comfort second
  and life prolongation third. Nursing home-based care for
  all medical conditions and substitution of medical
  treatment for surgical treatment whenever possible.
• Palliative Pathway. Prime goal is comfort, with
  maintenance of physical and cognitive function second and
  life prolongation third. Nursing home-based care
  exclusively, keeping diagnostic tests to a minimum.
• Comfort Only. Only goal is comfort. Treatment is
  exclusively to relieve symptoms, e.g., pneumonia would be
  treated with oxygen, acetaminophen, and morphine, not
   – From the Hebrew Rehabilitation Center for Aged, Boston MA
              MDS and Goal Setting

• Section J5c “end stage disease, 6 months to live.”
   – Assessor should observe resident and consult staff,
     especially attending physician, whose certification of
     prognosis should be documented
• Section A10 – Advance directives
• Multiple MDS items reflect change of condition
   – Change in cognition, communication, mood, ADL
     function, urinary continence, care needs, pain, weight,
     pressure ulcers, hospital, ER, or special procedures
• Clinical change should merit significant change
Federal regs on “highest practicable well-being”

• Fundamental regulatory goal is:
   – “…for the resident to receive the necessary care and
     services to attain or maintain the highest practicable
     physical, mental, and psychosocial well-being in
     accordance with the comprehensive assessment and
     plan of care.”
• This does not mean that regardless of the
  resident’s condition, the facility must continue to
  provide rehabilitation or restorative goals, but that
  there is a comprehensive assessment and plan.

• Increased dependency near end of life cannot
  result in isolation – a predictor of abuse and
  neglect. Rather, dependency may result in
  increased amount of staff time to care for the
• The ongoing assessment, care plan development,
  care plan implementation, and revision are the
  elements that direct the decision of avoidable vs.
  unavoidable outcomes (e.g. weight loss, pressure
 Therefore, the key is assessment, planning, and

• Purposeful observations and conversations should
  be documented in the resident’s record
• All members of the team should collaborate to
  translate the resident’s wants into care goals and
• Symptoms should be assessed, interventions
  initiated, and evaluation should be documented –
  all need to be informed about changes in care
• There is always something that can be done.

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