Advance Care Planning

Basics

Description

  • Advance care planning (ACP) allows patients to have a voice in the decisions that affect their care if they lose the ability to do so for themselves.
  • There are several methods of addressing goals of care:
    • 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
    • Facilitated conversations with family and significant others
  • 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 (1): written instructions to guide decision-making in the event a patient is unable to provide informed consent
      • LWs and DPOA/MPOAs usually only take effect if the patient has been determined to lack capacity to decide care for himself or herself; otherwise, patient preference takes precedence (even if contradictory to an 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]).
    • DPOA: a written document designating a surrogate 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.
      • If multiple HCPs are named, disagreements about who speaks for the patient must be resolved before a decision can be made.
      • Different states have varying rules regarding precedence if there is a conflict between an LW provision and an HCP decision. In some states, the DPOA supersedes the LW; in other states, the most recently executed document is legally binding. When there is a 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 for patients with serious life-threatening illness
      • Designed to minimize confusion in emergent situations, these are adjunctive documents to LWs and DPOAs 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 an 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.
      • Patients with POLST documents have fewer unwanted interventions.
  • 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 DPOA.

Pediatric Considerations

  • Pediatric ACP (pACP) is less common.
  • 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 pACP are unfounded.
    • pACP may unburden parents from difficult decisions and is associated with increased positive emotions, understanding of the patient’s illness, and provider’s rapport.

Treatment

  • Suggested discussion points:
    • For all adult patients:
      • Discuss basic medical decision-making.
      • Assess willingness to engage in ACP. Do not force patients if they are not ready to have this potentially emotionally challenging conversation.
      • Ask patients to identify who they would like to make decisions for them if they were unable to do so.
      • Encourage patients to inform trusted family or friends about new diagnoses or changes in health.
      • Discuss what values are most important to patients.
      • Document decisions concisely and clearly.
    • For any patient with a chronic, serious, or terminal illness:
      • Discuss the natural course of disease progression, including time course and end-of-life expectations.
      • For example:
        • Chronic obstructive lung disease: exacerbations, decreased ability to perform activities of daily living, supplemental oxygen, mechanical ventilation
        • Diabetes: macrovascular and microvascular complications (heart attack, stroke, dementia, dialysis, amputations)
        • Malignancy: possibility of chronic pain, inability to swallow/poor appetite necessitating alternative feeding options, ascites and therapeutic procedures, treatment side effects
    • For older patients:
      • Consider routine discussions of ACP around age 65 years. It is crucial to speak with patients while they still have decision-making capacity. Discussions should be repeated regularly, especially if clinical course deteriorates, to ensure patient preferences have not changed.
      • Provide online resources for completing LWs.
      • Refer patients to legal or notary services for advance directive/DPOA, as applicable.
      • Complete POLST/MOLST forms in clinic, if applicable in your state.
    • For any change in clinical status (including frequent ER visits or hospitalizations):
      • Changes in functional status should prompt a discussion about prognosis and future wishes. Hospitalizations are important milestones to discuss recovery or decline.
      • Consider palliative care services.
      • Consider support services to prevent caregiver burnout.
  • At the end of life, if it is the patient’s desire, it is important to engage hospice services in a timely manner.
    • ACP discussions are often complicated by social, familial, cultural, spiritual, and medical factors. It is important to be sensitive to each patient’s individual context.
    • Do not force the conversation if a patient is resistant or unprepared to discuss ACP.
      • Motivational interviewing can be used to gauge interest and readiness to discuss ACP.
      • Addressing implications for friends and family who may be burdened with decision-making may help promote ACP conversations.
    • The first time ACP is brought up often serves as an introduction to the topic and an opportunity for the patient to consider options. Subsequent visits can address specific scenarios and choices.
    • Avoid medical jargon (i.e., CPR, mechanical ventilation, parenteral nutrition, etc.) when addressing options. Patients may not understand the severity or implications of advanced life-saving interventions. It may be more effective to describe how a particular intervention may affect the patient and what the resulting quality of life may look like.

Ongoing Care

Reimbursement: The Centers for Medicare & Medicaid Services reimburses physicians for ACP discussions.

  • Current CPT codes are 99497 for the first 16 to 45 minutes of discussion and completion of forms and 99498 as an add-on for a total of 46 to 75 minutes (2).
  • There are no limits to the number of times ACP can be reported in a given period of time.
  • An advance directive does not have to be completed in order to bill for services.
  • No specific diagnosis is required for the ACP codes (3).

Follow-up Recommendations

Patient Monitoring

  • There are no specific guidelines for how often an LW or DPOA discussion should be revisited after completion.
  • When there is a new diagnosis or a significant change in clinical status, have the patient consider how it would affect his or her ACP decision-making.
  • Have patients display POLST/MOLST forms prominently for ease of visibility to EMS, such as on their refrigerator.

Patient Education

  • See references for links: The National Hospice and Palliative Care Organization, National Institute on Aging, Aging with Dignity, National Healthcare Decisions Day, and the American Bar Association have resources to help patients.
  • Online platforms such as Prepare for your Care and MyDirectives allow patients to specify their wishes electronically.
  • DeathWise is a nonprofit organization with worksheets patients can use for the health, financial, care of body, and service components of ACP.

Complications

  • Often LWs, DPOA/MPOAs, and POLST/MOLSTs are completed, but physicians do not have access to them. Electronic health records are a convenient place to store documents, but they may be difficult to retrieve.
    • Any ACP form should be a part of the medical record with open access (if possible) to facilitate appropriate decision-making.
    • Medical bracelets or other devices are often used to notify EMS of patient directives.
  • Emergency rooms are vulnerable to uncertainty about what interventions patients want if they cannot communicate for themselves and guiding documents are often not readily available.
    • POLST forms can help avoid confusion.
  • There is often a misunderstanding on the part of both doctors and patients regarding do-not-resuscitate (DNR) and do-not-intubate (DNI) orders.
    • DNR/DNI orders can be reversed and should be readdressed as the patient’s clinical status changes.
    • DNR/DNI in a person with a chronic progressive illness does not necessarily mean DNR/DNI for an acute reversible process.

Additional Reading

Codes

ICD-10

  • Z51.5 Encounter for palliative care
  • Z66 Do not resuscitate
  • Z71.89 Other specified counseling

ICD-10

  • V49.86 Do not resuscitate status
  • V66.7 Encounter for palliative care
  • V68.89 Encounters for other specified administrative purpose

SNOMED

  • 103735009 Palliative care
  • 143021000119109 Do not resuscitate status with supporting documentation
  • 3011000175104 Active limitation of emergency treatment
  • 3021000175108 Active heathcare surrogate
  • 3031000175106 Advance healthcare directive requested
  • 3041000175100 Active five wishes
  • 3051000175103 Advance directive information unavailable
  • 3061000175101 Advance directive infomation pending evaluation
  • 306237005 Referral to palliative care service
  • 310301000 Advanced directive status
  • 310302007 Advance directive discussed with patient
  • 310303002 Advance directive discussed with relative
  • 310305009 Active advance directive (copy within chart)
  • 425392003 Active advance directive
  • 425393008 Active Durable Power of Attorney for Healthcare
  • 425394002 Active healthcare will
  • 425395001 Active living will
  • 425396000 Active advance directive with verification by family
  • 425397009 Active advance directive with verification by healthcare professional
  • 449441000124105 Durable power of attorney for healthcare
  • 449891000124104 No advance directive
  • 4901000124101 Palliative care education
  • 697978002 Provider orders for life-sustaining treatment
  • 713058002 End of life care planning
  • 713281006 Consultation for palliative care
  • 713580008 Review of advance care plan
  • 713581007 Review of advance care plan offered
  • 713602009 Discussion about end of life care planning
  • 713603004 Advance care planning
  • 713604005 Education about advance care planning
  • 713662007 Discussion about advance care planning
  • 713665009 Discussion about advance care planning with family member
  • 714361002 Discussion about advance care planning with caregiver
  • 714748000 Has advance care plan
  • 715016002 Advance care planning request by patient
  • 718637005 End of life care planning offered
  • 87691000119105 Comfort care only status

Clinical Pearls

  • ACP is an important and underused element of compassionate and comprehensive patient-centered care.
  • The primary barriers to discussing advanced directives from the patient’s perspective include lack of knowledge, fear of burdening family, and a desire for physicians to initiate the discussion.
  • The primary barriers to discussing advanced directives from the physician’s perspective include discomfort with the topic, lack of emotional support, lack of reimbursement, and lack of time to fully address the topic.
  • Fewer unwanted interventions occur in emergency room and inpatient settings when ACP is actively reviewed and patient’s wishes are documented and conveyed appropriately.

Authors

Heather Ann Dalton, MD, FAAFP
Christopher Lin-Brande, MD

Bibliography

  1. American Association of Retired Persons. Advance directive forms by state. http://www.aarp.org/home-family/caregiving/free-printable-advance-directiv.... Accessed October 31, 2022.
  2. Centers for Medicare and Medicaid Services. Medicare Learning Network: advance care planning. https://www.cms.gov/outreach-and-education/medicare-learning-network-mln/m.... Accessed October 31, 2022.
  3. Bosisio F, Barazzetti G. Advanced care planning: promoting autonomy in caring for people with dementia. Am J Bioeth. 2020;20(8):93–95. [PMID:32757918]

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