Advance Care Planning

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DESCRIPTION

  • Advance care planning (ACP) (1) is a process that allows patients to have a voice in current and future decisions about their care based on their individual values, wishes, and preferences. There is a recent shift from “planning” to “preparation” emphasizing the fluid and ongoing nature of these conversations.
  • There are several methods of addressing a patient’s priorities in their care:
    • Facilitated conversations with family and significant others
    • Advance directives, including living wills (LWs) and heath care durable powers of attorney (DPOA), also known as a medical power of attorney (MPOA)
    • Physician/medical orders for life-sustaining treatment (POLST/MOLST) and directives to physicians
  • ACP is an important aspect of patient-centered care as the population ages and individuals lose decision-making capacity, when new chronic medical conditions are diagnosed, or in the setting of severe acute illnesses like COVID-19.
  • ACP helps to interpret patient wishes in the context of individual illness circumstances, negotiate conflicts in decisions, and allow patients to determine what is in their best interest based on personal values.
  • Definitions
    • Advance directives (2): written instructions to guide decision-making in the event a patient is unable to provide informed consent
      • LWs and MPOAs usually only take effect if the patient has been determined to lack capacity to decide care for him or herself; otherwise, patient preference takes precedence (even if contradictory to a LW).
      • If done appropriately, these help patients avoid languishing in poor quality of life states or receiving unwanted care which can be associated with complex ethical dilemmas.
    • LW: a patient’s explicit written instructions of his or her wishes regarding medical care
      • Each state has specific legal requirements. Certain states do not recognize LWs but have other “medical directive” forms. LWs and medical directives can take effect immediately (e.g., when a patient is diagnosed with a terminal illness) or when a patient can no longer make decisions for himself or herself.
      • LWs have direct treatment instructions.
      • Challenges of LWs include lack of standardization, narrow scope, and limited updating on changes in disease trajectory.
      • LWs do not expire and they can be revised.
      • The LW is NOT a medical directive; so, it cannot prevent life-sustaining treatment in an emergent situation (as a POLST/MOLST can [see next]).
    • MPOA: a written document designating a surrogate medical decision maker in the event a patient cannot speak for himself or herself.
      • A health care proxy (HCP)/MPOA speaks on behalf of the patient to make decisions aligned as closely as possible to the patient’s health care wishes. Ideally, this is someone the patient knows and trusts. It is also helpful if this individual has had discussions with the patient about his or her values and desires.
      • Different states have varying rules regarding precedence if there is a conflict between an LW provision and an HCP decision. When there is conflict, engage with palliative care, ethics, and legal.
      • If a patient has had goals of care discussions with friends or family but does not have a legally named HCP, those discussions can still help inform the decision-making process and elicit patient values.
    • POLST/MOLST: a medical directive which, unlike an LW, directs point of care decision-making by EMS/first responders
      • Designed to minimize confusion in emergent situations, these are adjunctive documents to LWs and MPOAs that provide clear instruction regarding resuscitation, intubation, and other life-sustaining treatments.
      • They are portable and follow a patient across different care settings. Given their simplicity, a POLST/MOLST is more likely to be followed than a LW, which can be difficult to locate.
      • Although EMS/first responders may be concerned about the legal implications of withholding life-sustaining treatment, POLST forms provide legal protection if patient wishes are followed.
  • There are no authoritative guidelines for when to initiate discussions about ACP; age 65 years may be an appropriate time. Additionally, patient values and wishes should be discussed following a new diagnosis of a serious illness or a significant change in disease trajectory. Each conversation must be individualized.
  • ACP should be completed while patients are able to make decisions about their future care. Every effort should be made to initiate discussions and complete required forms prior to incapacitating health changes.
  • Nursing home residents and patients with dementia often do not have capacity to complete legal documents related to LW and MPOA.

Pediatric Considerations
For children with serious acute or terminal illness, it is a difficult (but important) part of treatment.

  • Provider fears about increasing parental distress when discussing ACP are unfounded.
  • ACP may unburden parents from difficult decisions and is associated with increased positive emotions, understanding of the patient’s illness, and provider’s rapport.

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