Advance Care Planning

Basics

Description

  • Advance care planning (ACP) allows patients to have a voice in the decisions that affect their care after they lose the ability to do so for themselves.
  • There are several methods of addressing goals of care as patients age:
    • Advance directives, including living wills (LWs) and heath care durable powers of attorney (DPOAs)
    • Physician/medical orders for life-sustaining treatment (POLST/MOLST)
    • 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 or when new chronic medical conditions are diagnosed.
  • It can be challenging to interpret patient wishes in the context of individual illness circumstances, negotiate conflicts in decisions, and to help patients 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 DPOAs 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).
      • Done appropriately, these can help patients avoid languishing in poor quality of life states and complicated 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 him or herself.
      • LWs have direct treatment instructions.
      • Challenges of LWs include lack of standardization, potential completion too far in advance of use, and narrow scope.
      • LWs do not expire, but they can be revised.
      • The LW is a documentation of patient preferences and may not prevent life-sustaining treatment in an emergent situation (as a POLST can [see below]).
    • DPOA: a written document designating a surrogate decision maker in the event a patient cannot speak for him or herself
      • A health care proxy (HCP) speaks on behalf of the patient to make decisions aligned as closely as possible to the patient’s 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.
      • If there is a conflict between an LW provision and an HCP decision, different states have varying rules regarding precedence. In some states, the DPOA supersedes the LW; in other states, the most recently executed document is legally binding.
      • 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.
    • POLST/MOLST: a medical directive which directs point of care decision making by emergency medical services (EMS) for patients at the end of life
      • 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-saving 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 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.
  • Nursing home residents and patients with dementia often do not have capacity to complete legal documents related to LW and DPOA.
  • ACP should be completed while patients are able to make decisions about their future care.
  • There are no guidelines for when to initiate discussions about ACP; age 65 years may be an appropriate time for a realistic conversation prior to the onset of dementia or other incapacitating illness. Each conversation must be individualized.

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 rapport.

Treatment

  • Suggested discussion points:
    • 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 charged 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.
    • Any patient with a chronic 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
    • “Elderly 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 to ensure patient preferences have not changed.
      • Refer patients to legal services for AD/DPOA.
      • Complete POLST forms in clinic.
    • 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, and medical factors. It is important to be sensitive to each patient’s individual context.
      • African Americans are less likely than whites to complete AD.
      • Preference for life-sustaining treatment, religious beliefs, and mistrust of the medical community contribute to this difference.
    • 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 (2).
    • Avoid medical jargon (e.g., CPR, mechanical ventilation, parenteral nutrition) when addressing options. Patients may not understand the severity of illness or the implications of advanced life-saving interventions.

Ongoing Care

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

  • Current CPT codes are 99497 for the first 30 minutes of discussion and completion of forms and 99498 for each additional 30 minutes (3).
  • 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.

Follow-up Recommendations

Patient Monitoring
  • There are no specific guidelines for how often a 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.

Patient Education

  • See references for links: The National Hospice and Palliative Care Organization, Aging with Dignity, National Healthcare Decisions Day, and the American Bar Association have resources to help patients.
  • Online platforms such as 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, DPOAs, and POLSTs 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 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 not readily available.
    • POLST forms can help avoid confusion.
  • There is often 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 or should not be honored in certain situations.
    • DNR/DNI in a person with a chronic progressive illness does not necessarily mean DNR/DNI for an acute reversible process.
    • The prognosis for successful resuscitation on a hospital ward is approximately 14%; it is 50-80% for patients undergoing surgery.

Additional Reading

Codes

ICD-10

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

Clinical Pearls

  • ACP is an important and underutilized element of compassionate and comprehensive patient-centered care.
  • The primary barriers to discussing advanced directives from the patient 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 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 the emergency room and inpatient setting when ACP is actively reviewed and wishes documented/conveyed appropriately.

Authors


Christopher Lin-Brande, MD
Heather A. Dalton, 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 September 23, 2019.
  2. Spoelhof GD, Elliott B. Implementing advance directives in office practice. Am Fam Physician. 2012;85(5):461–466.  [PMID:22534224]
  3. Centers for Medicare and Medicaid Services. Frequently asked questions about billing the physician fee schedule for advance care planning services. https://www.cms.gov/Medicare/Medicare-fee-for-service-Payment/PhysicianFee.... Accessed August 1, 2018.


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