Advance Care Planning: More than a signature

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Adapted from the in progress Palliative Care International Curriculum. Takes an in-depth look at the longitudinal conversation required to plan for the end of life. Differentiates advance care planning from current care planning and describes the common pitfalls encountered during planning.

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  • Build trust through a process of determining preferences for goals of treatment
    Permits the patient (or the parents if the patient is a child) to under­stand his or her own values, goals, and preferences
    The physician and proxy learn about those preferences and needs; taking action if necessary
    Fosters a spirit of frankness and openness
    Promotes team­work between the patient, the proxy, and the physician
    Attempts to protect the patient’s family from having to make decisions for which they are unprepared.
    Advance care planning is preventive medicine because it avoids future confusion and conflict
    Image credit: http://somebodyshoulda.com/wp-content/uploads/2013/06/Regret.jpg
  • Advance care planning is often assumed to be about completing advance directives but is really about clarifying the patient’s goals and values
    There are multiple, competing interests in the outcomes of ACP:
    Patients want to be sure they are treated they way they want to be treated
    Emergency physician / Intensivists need to make acute decisions
    Surrogates needs to understand patient’s long-term goals
    Advance care planning is a process, not an event
    It is the process of planning for future medical decision-making in the event that the patient is unable to make his or her own decisions
    The process helps patients identify and clarify their personal values and goals about health and medical treatment
    Patients determine whom they would like to make health care decisions on their behalf in the event they cannot make decisions for themselves
    Patients & their prospective proxies need multiple opportunities to discus the goals & values that should guide medical decisions
    During this process patients explore, discuss, articulate, and document their preferences
    They identify key circumstances where they might have strong opinions about what should be decided
    It is designed to ensure that a patient’s wishes will be respected in the event that the patient is unable to participate in decision-making
    The sense of control and peace of mind that this process fosters in the patient and the reduction in anxiety of proxy decision makers are important benefits
    Process of ACP
    A structured approach to conversations includes
    Assessing patient’s readiness to discuss the topic;
    assessing the patient's physical, psychological, and spiritual needs;
    assessing the patient's support system;
    involving prospective proxies as early as the patient allows;
    discussing prognosis;
    assessing patient-specific goals.
    Children with serious illness
    Not a usual topic in primary care pediatrics
    Designed to ensure that the patient’s parents are provided with an understandable discussion of the child’s prognosis, and of the treatment options, should the child’s condition deteriorate to a terminal state
  • This image represents a timeline of iterative discussions over the course of remaining life and seriousness of disease encompassing
    Advance care planning, which discusses…
    What are the goals and preferences for treatment?
    What is important for us to try to accomplish?
    Family-centered deliberative & reiterative discussions
    Current care planning, which discusses…
    What are we going to do (or not do) in trying to accomplish the desired outcomes?
    Following the diagnosis of a potentially life-shortening illness
    There is a period of overlap where ACP is more urgent
    And current care decisions may be made simultaneously.
    The point of loss of capacity or relinquishment of decision-making
    May or may not occur for a given patient;
    Represents the transition to pure current care planning.
  • Where is the patient along the spectrum of health or disease?
    Earlier in the course:
    Goals
    Desired outcomes
    Later in the course:
    What are the options for care?
    Which of the desired outcomes can we achieve and how?
    Team members can best help patients decide which treatments are appropriate
    taking the necessary time to explore all curative and palliative care options
    providing honest and timely prognostic information
    making clear recommendations
    facilitating patient-family discussions
    affirming patient choices.
  • Convey the health care team’s
    commitment to follow the patient’s wishes
    desire to protect the patient from unwanted treatment or un­der-treatment
    Desire to prevent the stress of unexpected decision-making
    desire to help plan for any caretaking needs of the patient’s family or significant others
    Patients believe that it is the physician’s responsibility to start advance care planning and will wait
    US national guidelines recommend beginning this conversation when the prognosis is one year or less (NCCN-Onc-Palliative)
    Most easily accomplished during stable health
    Note that it is essential to revisit these plans periodically as part of normal care and indicate roughly when you would advise doing so for this patient
    Often even patients who have no prior advance care planning documents have had prior discussions on the topic
    Clinical staff are often reluctant due to concerns that
    Some may be concerned that the subject of advance care planning will frighten the patient or send the ‘wrong message’
    Others may be uncertain about the most effective approach to use
    Patients welcome the opportunity to discuss their concerns with their physician
    Those who routinely engage in the process find it helpful and not too time-consuming
    This question should only be when and how to raise the topic
    When introducing the topic, start by inquiring how familiar the patient is with advance care plan­ning, even if you have touched on the topic at the first meeting
    If appropriate, introduce other members of the health care team who will be involved in the process
    As patients frequently wish to minimize the decision-making burden for family, suggest that the patient involve family members, friends, and even members of the community to explore how to best manage potential burdens
    Encourage the adult patient to identify a possible proxy decision maker who might act on his or her behalf, to be involved in subsequent conversations
    The best proxy decision maker is not always a family member or signifi­cant other
    Sometimes the decisions are too difficult for people close to the patient, who may be overly influenced by their attachment or by burdens of care
    The proxy should be someone whom the patient trusts and who would be willing and able to represent the patient’s wishes
    For pediatric patients, the discussion should take place with the parents with much the same timing as for adult patients
    Parents have a particularly difficult time adjusting to their child’s cancer and its consequences, so allow as much time and counseling support as possible
    Discussions should occur, at a minimum, at the time of relapse of dis­ease, or at the time of significant complications, before the child is in a state of crisis
    Image credit: http://www.familysitescatalog.com/news/gallery/families-versus-family-physicians/families_versus_family-_physicians.jpg
  • Role of the proxy
    A joint meeting between the patient, physi­cian, and proxy can be invaluable to ensure common understanding
    Involve the proxy in the discussions and planning so that he or she can have a thorough and explicit understanding of the patient’s wishes
    the patient should specify the role he or she would like the proxy to assume if the patient is incapacitated, they may want the proxy
    To make all of the decisions with his or her prior knowledge of the patient
    To implement only the patient’s preordained plans
    To seek guidance from additional family members or certain friends
    To ignore interference from certain individuals
    To defer to the physician
    Et cetera
    Ethics
    Proxies may
    try to imple­ment specific, explicit treatment choices, or
    they may try to decide according to the patient’s best interests, or
    they may decide by taking into consideration the interests of all parties that the patient cares about in a form of substituted judgment
    Most commonly, the proxy uses a blend of standards — what he/she knows about the patient’s wishes and his/her own best judgment based on the situation
    Image credit: http://3.bp.blogspot.com/_g6b7lckX2zE/TRwuFXSK8vI/AAAAAAAABZo/hu-kRjqNvB8/s1600/Medical+Decision+Making.jpg
  • Patient and proxy education
    Empowerment and preparedness of the patient and proxy
    Acknowledge that decisions that may need to be made in the future will be emotionally stressful
    Reframe this conversation as one that reinforces the ability of the proxy to be faithful to the wishes of the patient
    Provide insight into the types of clinical scenarios that might arise and the types of decisions most commonly faced
    Because recovery cannot always be predicted, help patients to consider situations involving uncertainty, incom­plete recovery, or even death
    It may be helpful at this point to educate both about what good end-of-life care can look like
    Image credit: http://misguidedchildren.com/wp-content/uploads/2013/10/branded%252Beducate%252B102.jpg
  • Elicit the patient’s values and goals
    It is never to early to develop an understanding of the patient’s values and goals related to health and illness
    There are a number of ways to facilitate this part of the discussion
    Ask about past experiences
    Describe possible scenarios
    Give multiples chances to consider and refine the patient’s ideas regarding where thresholds exist for withdrawal or withholding of life-prolonging interventions
    Ask the patient if he or she wants to write down in a letter to the physician about how such things should be handled
    Help the patient to articulate his/her own general principles, values, and goals for care in given situations
    If a pa­tient already has a life-threatening condition, the conversation may be more focused on specific scenarios and treatment issues
    For example, a patient with end-stage cardiomy­opathy really needs to consider the issues of cardiopulmonary resuscitation (CPR), Internal Cardiac Defibrillators and the role of intensive care units
    The patient with end-stage renal disease must consider dialy­sis
    The patient with advanced AIDS needs to consider dementia and respiratory failure
    For pediatric patients, involve them to the level they are comfortable with and work with the parents/guardian
    Image credit: http://blog.ewomennetwork.com/wp-content/uploads/2013/10/Values_01.jpg
  • There are multiple, web-based tutorials and products available to assist with the conversation
    They inform that conversation but
    The health care team will still be instrumental in
    Clarifying the questions
    Tailoring the answers
    Eliciting subtleties and
    Making the outcome actionable when appropriate.
    Encourage patients to use the Prepare for your Care tool prior to their visit with the team.
  • Step 3: Document patient preferences
    It is rarely appropriate to make clinical decisions based upon documentation alone
    The medical documentation or statutory documents may prompt conversations between the patient, their proxy and the team
    Formalize the directives
    The team documents the decisions and reviews with patient & proxy
    Check for, and help to correct, any incon­sistencies and misunderstandings
    Make sure that the directives provide the type of information needed to guide the proxy and the health care team
    After a final review is complete, ask the patient to confirm his or her wishes by signing the directives
    Assure the patient that the document can be changed as his or her wishes change
    Enter directives into the medical record
    Document them in the patient’s medical record
    Recommend statutory documents
    For added protection, patients should be encouraged to complete one or more statutory documents (e.g., living will or durable power of attorney for health care) that comply with state statutes
    Distribute the directives
    It is important to have these records wherever the patient may receive care
    Give the patient and their proxy the original document as well as several dated copies
    Place them into a central repository (such as a hospital or a regional or national center)
    Provide copies to the patient, proxy decision maker, family members, and all health care provid­ers as appropriate
    If appropriate, change the plan of care
    Practical sugges­tions may be helpful
    Consider posting telephone numbers by the home telephone to call in an emergency (eg, the hospice nurse on call), or substitute emergency numbers
    Image credit: http://www.theintegrationengineer.com/wp-content/uploads/2009/04/stack_of_documents.jpg
  • Begins when the patient has an illness that requires medical decision-making
    Encourage the patient & proxy to expect medical provider to clearly explain the meaning of the various clinical scenarios under discussion
    Explain the benefits and burdens of various treatment options
    Explain that any intervention started can later be stopped if it is not meeting overall treatment goals
    Image credit: http://thorntoncenter.net/wp-content/uploads/2012/02/time1.jpg
  • When patients become incapacitated, the application of prior wishes to real circumstances can be challenging
    The following guidelines may be helpful to ensure that a patient’s advance directives are followed as closely as possible
    Most advance directives go into effect when the patient is no longer able to direct his or her own medical care
    However, most patients choose to involve their proxy earlier in the course
    Remember that any physician can determine a patient’s capacity for medical decision-making
    Other members of the team must be vigilant for changes in the patient’s status and alert the physician if they think the patient’s capacity may be compromised
    Never assume an advance directive’s content without actually reading the document
    Do not take for granted that patients who have living wills want treatment withheld
    Advance directives should be interpreted in view of the clinical facts of the case
    No matter how thorough they are, advance directives cannot anticipate all possible circumstances
    The team along with the proxy may need to extrapolate from scenarios described in the advance directive to the current situation, and make an edu­cated guess as to what the patient would want
    Certain patterns of decisions have high predictability
    a declination of less invasive interventions has been shown to predict declinations of more invasive interventions
    Acceptance of more invasive interventions predicts acceptance of less invasive interventions
    If a patient has indicated that he or she would like interven­tion in a poor-prognosis scenario, there is a high probability that the patient would also accept intervention in a better-prognosis situation
    Likewise, if the patient has indicated he or she would decline intervention in a better-prognosis scenario, there is a high prob­ability he or she would also decline if the prognosis were poor,,,
    If there are disagreements within the team or between the team and the proxy, assistance should be sought from an ethics consult­ant or committee
    Image credit: http://upload.wikimedia.org/wikipedia/commons/d/df/Refusal_of_treatment_form.jpg
  • Step 4: Review and update the directive
    It is important to revisit the subject of advance care planning on a periodic basis
    Major life events for the patient are good cues to remember to do this
    Illness;
    Marriage;
    the birth of a child;
    the death of a loved one;
    Estate planning
    These life events may affect a person’s attitude toward her health care and/or end-of-life care
    Image credit: http://community.ally.com/straight-talk/wp-content/uploads/2012/11/gettingmarriedlaterinlife-300x200.jpg
  • Advance planning goes beyond the documentation
    Planning other issues that face patients at the end of their lives is critical
    Doing this allows patients approaching the last hours of their lives to have a last chance to finish their business, create final memories, give final gifts, and say their good-byes
    Patients and their families need to know when to begin making these arrangements and having these discussions
    Each member of the care team is responsible for helping them with these decisions
    Often patients and families are ready for these discussions before the professionals
    Image credit: http://media.sacbee.com/static/weblogs/photos/images/aug09/jm_hospice_sm/jm_hospice11.jpg
  • Choice of caregivers is appropriate for early speculation and later reevaluation
    The choice of caregivers for each patient is crucial
    Early in an illness there is still time to discuss and plan for the best configuration
    Patients may or may not want family members to care for them
    Family members may or may not be able to assume responsibilities for caring
    All caregivers need to have the opportunity to change their role if
    they feel the stress is too much;
    or they are not getting enough chance to finish their personal business with the patient.
    Image credit: http://1.bp.blogspot.com/-P2SGI8Qea4Y/UAcIsbQW6BI/AAAAAAAAACU/im2V-NLCQkU/s1600/caregiving.jpg
  • Choice of setting
    Will need to be continuously assessed in the context of events as they unfold
    The choice of the care setting for the last hours of a person’s life should be
    as acceptable as possible to all involved
    Safe
    Each setting will carry benefits and burdens
    Whatever the choice, the setting should permit family members to remain with the patient as much as they want, and provide them with opportunities for privacy and intimacy
    Many patients want to die at home and many families will want to facilitate that choice
    Care and death in the home may not always be the best choice
    may expose family members to undue burden or compromise their careers, their personal eco­nomic resources, or their health
    the number of able caregivers and personal resources may be limited
    family members may fear ghosts and not be able to live on in their home afterward
    Image credit: http://media.cmgdigital.com/shared/lt/lt_cache/thumbnail/960/img/photos/2012/03/31/1b/a7/101911_met_hospice_1278738a.JPG
  • It is important to understand the perspective and wishes of all who are present: the patient, the family, and the caregivers
    Personal expectations, agendas, fears, phobias, and acceptable setting(s) for care need to be clear
    Personal, cultural, and religious values, beliefs, and practices need to be anticipated and respected
    Identification and acknowledgment that some family members have a need to give care and others don’t will help to allow each to participate as closely as makes him/her comfortable
    Image credit: http://4.bp.blogspot.com/-nn6gVW2_OIA/TeiqyJM9tNI/AAAAAAAACM4/WC9QTkJUrwY/s1600/Candle%2BLight%2B027.jpg
  • Advance practical planning
    Many patients will choose to
    get their financial and legal affairs in order;
    give gifts and plan for bequests;
    Consider organ donation or autopsy;
    Plan for burial/cremation and their funeral/memorial services;
    Arrange guardianship of their children.
    Some patients will even want to give family members permission to build new lives after they die
    Image credit: http://www.fulkersonelderlaw.com/wp-content/uploads/2013/08/Long-Term-Care-Estate-Planning.jpg
  • Anticipating and avoiding the common pitfalls is essential to a successful advance care planning process
    Failure to plan
    Too often, situations occur and decisions are made without the benefit of advance care planning
    Be proactive
    Involve both patient and proxy early and often
    Unclear patient preferences
    Be sure to clarify patient preferences if they do not seem clear to you or to the proxy
    Vague statements can be dangerously misleading
    E.g. “I never want to be kept alive on a machine”
    What does “machine” mean…
    Mechanical ventilation?
    Hemodialysis?
    Would their wishes would change if their condition were readily reversible?...
    …or if their prognosis were unclear?
    Discussion focused too narrowly
    While portable documents such as living will or provider orders for life sustaining treatment are important
    Facilitating the conversation is more important.
    Avoid isolated attempts to gain a do-not-resuscitate (DNR)
    they often create chaotic emotions and thoughts in patients who have to imagine immi­nent death to make the decision
    A DNR discussion is usually an indication that other palliative goals and measures should be considered
    Making assumptions
    27% of those eventually requiring CPR were judged stable by an admitting physician (Mizra et al., 2005)
    Patient’s desires are not static over time and do not necessarily conform to their disease state, functional status or prognosis
    The majority of patient’s who have an advance directive have not discussed it with a healthcare professional
    The forms are misleading and often written well above a fifth-grade level
    The patient/proxy may never have envisioned real-world scenarios
    Image credit: http://christianfaithatwork.com/wp-content/uploads/2011/09/pitfalls.jpg
  • This image represents a timeline of iterative discussions over the course of remaining life and seriousness of disease encompassing
    Advance care planning, which discusses…
    What are the goals and preferences for treatment?
    What is important for us to try to accomplish?
    Family-centered deliberative & reiterative discussions
    Current care planning, which discusses…
    What are we going to do (or not do) in trying to accomplish the desired outcomes?
    Following the diagnosis of a potentially life-shortening illness
    There is a period of overlap where ACP is more urgent
    And current care decisions may be made simultaneously.
    The point of loss of capacity or relinquishment of decision-making
    May or may not occur for a given patient;
    Represents the transition to pure current care planning.
  • Advance Care Planning: More than a signature

    1. 1. Concept Advance care planning is a process of structured discussion and documentation woven into the regular process of care that is reviewed and updated on a regular basis.
    2. 2. Advance Care Planning Diagnosis Current Care Planning Death Capacity Loss
    3. 3. • PATIENTS BELIEVE IT’S THE DOCTORS JOB • INVOLVE PROXY EARLY
    4. 4. • ACKNOWLEDGE EMOTIONAL STRESS • HELP TO REFRAME CONVERSATION
    5. 5. • ASK ABOUT PAST EXPERIENCES • DESCRIBE POSSIBLE SITUATIONS • WRITE A LETTER
    6. 6. • THECONVERSATIONPROJECT.ORG • FIVE WISHES (ADULTS) (AGINGWITHDIGNITY.ORG) • GO WISH CARDS (GOWISH.ORG) • MAKING CHOICES (GUNDLUTH.ORG/ADVANCECARE) • PREPAREFORYOURCARE.ORG • VOICING MY CHOICES (ADOLESCENTS) (AGINGWITHDIGNITY.ORG)
    7. 7. • ENTER INTO THE MEDICAL RECORD • RECOMMEND STATUTORY DOCUMENTS • ENSURE PORTABILITY
    8. 8. • DETERMINE APPLICABILITY • CONSULT WITH THE PROXY • READ & INTERPRET THE ADVANCE DIRECTIVE
    9. 9. • FOLLOW UP PERIODICALLY • NOTE MAJOR LIFE EVENTS • DISCUSS, DOCUMENT CHANGES
    10. 10. • ADVANCE PLANNING • PERSONAL CHOICES • CAREGIVERS • SETTING • LOSS, GRIEF, COPING STRATEGIES
    11. 11. • BE FAMILY FIRST • EVERYONE COMFORTABLE IN THE ROLE • SEEK PERMISSION • CHANGE ROLES IF STRESSED
    12. 12. • BURDENS & BENEFITS • PERMIT FAMILY PRESENCE • MINIMIZE FAMILY BURDEN • BACK-UP SETTING
    13. 13. • FINANCIAL & LEGAL • FINAL GIFTS • AUTOPSY • BURIAL / CREMATION • FUNERAL SERVICES • GUARDIANSHIP
    14. 14. • FAILURE TO PLAN • PROXY ABSENT FOR DISCUSSIONS • UNCLEAR PATIENT PREFERENCES • FOCUS TOO NARROW • MAKING ASSUMPTIONS
    15. 15. Advance Care Planning Diagnosis Current Care Planning Death Capacity Loss

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