Goals of care

A patient's goals of care are based on their values, priorities, and preferences within a given clinical context. These goals are typically determined through shared decision-making and should be established and documented for any patient with an increased likelihood of morbidity and mortality. The care team creates a plan in collaboration with the patient by first evaluating the patient's understanding of their illness and prognosis and then discussing their values and preferences and addressing any concerns. The discussion is thoroughly documented and, if relevant, a standardized form (e.g., MOLST) to communicate care directives to providers and health care facilities is completed.

This article outlines the necessary background and steps for initiating and conducting the discussion, establishing goals of care, and appropriately documenting them. See “Counseling for terminally ill patients” for additional considerations.

Goals of care ^[1]

• The aim of medical care for an individual patient based on the patient's values, priorities, and preferences in a given clinical context
• Typically determined through shared decision-making with the patient and/or their surrogate decision-maker
• May also be informed by advance healthcare directives (see “Hierarchy of medical decision-making.”)
• Used to determine the overall care plan, including the use or avoidance of specific medical interventions

Goals of care are dynamic and may change over time.

Medical futility and potentially inappropriate treatments ^[2]

This is a topic of ongoing debate and subject to varied interpretation. ^[2]

• Futile treatment: There is no universally accepted definition of medical futility. ; ^[3]
  • This term is often used to describe interventions thought to be nonbeneficial.
  • As the interpretation of benefit is subjective, its use is best limited to interventions that definitely cannot accomplish their intended physiological goal.
  • In most other cases, the term “potentially inappropriate treatment” may be more suitable.
• Potentially inappropriate treatment
  • A treatment with some chance of achieving a desired outcome for the patient, but with justifiable ethical reasons to withhold it
  • Disagreements about potentially inappropriate treatments are usually value-based.
  • Treatment decisions should involve shared decision-making, conflict resolution strategies, and expert advice (e.g., ethics consult).

Advance care planning (ACP) ^[4][5]

• The act of clarifying and documenting desired future goals of care, usually through a legal process.
• Typically, the aim is to communicate the patient's wishes to treating teams and loved ones in case they lose decision-making capacity.
• Although ACP is sometimes used interchangeably with goals of care discussions because the processes overlap, there are some differences.
  • ACP is more commonly codified in legal documents that clinicians cannot draft (e.g., advance directives, medical power of attorney).
  • Although clinicians are usually consulted and often initiate ACP discussions, patients can document their ACP alone or via a legal representative (e.g., a notary) without clinician involvement.

Definitions

• Life-sustaining treatment (LST): interventions aimed at prolonging life
• Limitation of LST: the avoidance or discontinuation of an LST when it is no longer thought to help achieve the goals of care ^[6][7]
  • Withdrawing LST: discontinuing an LST (e.g., extubating a mechanically-ventilated patient, discontinuing artificial feeding for a patient in a persistent vegetative state)
  • Withholding LST: avoiding intensifying a current treatment or initiating a new treatment (see “Orders for limiting LST” for examples).
  • May be requested at any time by a patient or their surrogate decision-maker
  • May be initiated by the medical team if an LST is considered a potentially inappropriate treatment
• Comfort-focused care: end-of-life care aimed at prioritizing symptomatic relief and patient comfort over curative or life-sustaining therapies ^[8]
  • Often limits, but does not preclude the use of invasive or life-sustaining treatment
  • See also “Comfort measures only” and “Palliative care.”

With fully informed consent, a patient or their surrogate decision-maker can refuse treatment at any time, even if this results in the patient's death. ^[6][7]

Orders for limiting LST

Orders for limiting LST are generally determined through shared decision-making with the patient and/or surrogate decision-maker.

• No escalation of treatment (NEOT): an order to continue ongoing treatment but avoid new or intensified treatment ^[9]
• Code status: orders designating which resuscitation efforts should be made in the event of cardiac and/or respiratory arrest ^[10][11][12]
  • Full code: Make all efforts to resuscitate.
  • Do not intubate (DNI): Withhold endotracheal intubation.
  • Do not resuscitate (DNR): Withhold CPR or advanced cardiac life support in the case of cardiac arrest.
  • DNR and DNI (DNR/DNI): Withhold both CPR and endotracheal intubation.
• Comfort measures only: commonly used as an order set or a level of care designation ^[8][13][14]
  • Typically meant to allow for a natural dying process while ensuring maximum comfort ^[15]
  • Should not be used as a standalone order, as it is poorly defined and interpretation varies ^[8]
  • Instead, include orders for specific comfort-promoting measures and indicate interventions to avoid.
  • See also “Comfort-focused care” and “Management of imminently dying patients.”
• Do not hospitalize. ^[16][17]
  • For patients in long-term care facilities or at home
  • Aims to reduce risk of iatrogenic harm and improve comfort near the end of life
• Perioperative advance directives ^[18]
  • Procedure-specific directives specify which procedures (e.g., intubation, chest compressions, defibrillation) are to be allowed or avoided perioperatively.
  • Goal-directed directives specify the patient's perioperative goals of care and allow appropriate resuscitation procedures to be determined by the physician.
  • Typically used in patients with a DNR and/or DNI order who require general anesthesia for a surgical procedure
  • Apply only for a defined perioperative period, after which the original code status order goes back into effect

Ethical and medicolegal issues ^[19]

• Decisions to withhold or withdraw LST are challenging and can pose ethical dilemmas, especially when goals of care discussions or advanced care planning have not yet occurred.
• Laws governing withdrawal of LST vary by region and clinical circumstances, e.g., brain death or persistent vegetative state.
• Disagreements can arise due to:
  • Medical advances that affect survival and recovery
  • Challenges with accurate prognostication
  • Varied interpretations of medical futility and potentially inappropriate treatment
  • Differences in cultural and religious beliefs
• Consult a medical ethicist early if there is uncertainty or potential for disagreement.
• Whenever possible, discuss and document in advance the circumstances in which a patient or surrogate decision-maker wishes to withdraw LST.
• See also “Ethical issues concerning brain death.”

• Goals of care discussions may occur at any time.
• The following situations should prompt a more urgent discussion: ^[11][20][21]
  • High likelihood of death within a year (e.g., advanced cancer or late-stage chronic disease)
  • Older patients who are seen in the emergency department and/or admitted to the hospital for serious illness
  • Anticipated need for critical care
  • Acute clinical deterioration
  • Conditions requiring investigations and/or treatments that are high risk, painful, invasive, and/or have a low likelihood of success

Goals of care should ideally be addressed as part of advanced care planning during health and/or early in the disease course, and repeatedly reevaluated as the clinical situation changes.

Code status should be confirmed with the patient, their advance directives, and/or their surrogate decision-maker at each hospital admission. ^[11]

Perform the following steps as the urgency of the situation allows: ^[11][20][21]

• Review the patient's medical record and consult health care team members to determine:
  • Past medical history and course of current illness
  • Patient's current functional status and quality of life
  • Treatment options and prognosis
  • Prior documented or verbalized care preferences and/or advance directives
• Determine who should participate in the goals of care discussion (see “Hierarchy of medical decision-making”).
  • Assess the patient's decision-making capacity.
  • Determine if a surrogate decision-maker has been appointed.
  • Consider involving palliative care, chaplain services, social work, and/or psychological services.
• Ensure a comfortable and private environment for the discussion, and try to avoid interruptions.

Familiarize yourself with cultural and religious views that may influence the patient's goals and preferences.

Using communication strategies

Examples of communication strategies that can be used to guide the conversation include:

• Ask-tell-ask
• SPIKES protocol
• REMAP framework ^[22]
  • Reframe: Clarify the medical situation.
  • Expect emotion: Anticipate and validate the patient's emotional response.
  • Map out goals: Ask open-ended questions about what matters most to the patient.
  • Align with goals: Explicitly reflect your understanding of the patient’s values and goals.
  • Propose a plan: Create a care plan that aligns with these goals.
• Also see “Breaking bad news” and “Management of challenges in goals of care discussions.”

Employ understandable language tailored to the cultural background, education level, and emotional state of the patient and their loved ones. ^[23]

Establishing a common understanding ^[11][20][21]

• Verify preferred roles in decision-making.
• Review prior discussions of medical conditions and health care preferences.
• Assess understanding of current illness and prognosis and willingness to receive more information.
• Explain current treatment measures and prognosis.
• Ask about expectations, worries, fears, and hopes.

Establishing values and goals ^[11][20][21]

• Explore the patient's values, priorities (e.g., acceptable health states), goals, and preferences.
• Review treatment and intervention options.
• Make recommendations based on the patient's expressed preferences and goals.
• Address code status when appropriate.
• Summarize and confirm understanding and agreement with the treatment plan.

Avoid rushing patients to make concrete decisions if they are not ready. Allow time to process and cope with difficult circumstances and bad news. ^[23]

Supporting decisions to limit life-sustaining treatment ^[11][20][21]

• Involve palliative care services if necessary.
• Consider referral for hospice care in patients with limited life expectancy and with limitation of LST orders.
• Provide additional information and assistance as appropriate (e.g., referral for chaplain services, psychosocial counseling).
• See also “Counseling for terminally ill patients” and “Spiritual care and counseling.”

General principles ^[11][24][25]

• Evidence-based recommendations for goals of care discussions in the emergency department (ED) are limited.
• Challenges may include:
  • Lack of familiarity with the patient and loved ones
  • Limited time for discussion
  • Heightened emotions
  • Inability to assess patient preferences (e.g., unresponsive patient)
  • Rapidly changing clinical condition
• When indicated, begin goals of care discussions in the ED, even though they may be limited in scope and detail.
• Document and communicate these clearly, especially during handover, to minimize repeating topics that are difficult for patients and their loved ones.
• Reassure patients and families that incomplete discussions can be continued with subsequent treating clinicians.

Crisis communication ^[11][24]

• Clinical context
  • Patients with an immediately life-threatening condition
  • Requires urgent, brief discussion of relevant goals of care and treatment plan (e.g., code status)
• Management
  • Initiate clinically appropriate resuscitation measures immediately if all the following apply:
    • The patient is at imminent risk of death or decompensation
    • No advance directives exist
    • Surrogate decision-maker cannot be reached in a timely manner
  • Otherwise, use advance directives, known care preferences, and/or surrogate decision-maker as available to guide immediate treatment.

Serious illness communication ^[11][24]

• Clinical context
  • Patients with serious illness who present with subacute or gradual decline
  • Allows for more thorough discussions and planning
• Management
  • When appropriate, initiate goals of care conversation following the steps listed in “Preparation” and “Technique/steps."
  • Encourage patients and their loved ones to continue discussing their care preferences with inpatient or outpatient providers.
  • Consider palliative care consultation to facilitate ongoing goals of care discussion.

• Document the following in the medical record: ^[24]
  • Names of individuals who participated in the discussion
  • The medical rationale behind the goals of care discussion
  • Brief summary of discussion points, stated preferences, and agreed goals of care
  • Updated code status, care orders, and advance directives
• Complete a standardized form to communicate end-of-life care directives to providers and health care facilities. ^[11]
  • Common forms in the US are based on the Medical Orders for Life-Sustaining Treatment (MOLST) model.
  • Typically addresses medical treatment, hospitalization, feeding and fluid administration, and code status
  • Can be signed by either the patient or a surrogate decision-maker
• Advance directives may include a living will, health care power of attorney, and/or health care proxy form. ^[11]

Advance care planning documentation should be kept up to date with the patient's clinical status and/or goals of care.

Common patient barriers to effective goals of care discussions ^[4]

Consider the following factors if beginning, continuing, or completing goals of care discussions are challenging.

• Hesitancy to engage in discussion
  • Fear of confronting the life-threatening nature of the condition
  • Concern that goals of care discussions will affect the course of the disease
  • Ambivalence regarding the benefits of discussion compared with disruption and distress caused by confronting mortality
• Reluctance to document goals of care
  • Concern about existing documents being prioritized over current wishes in the hierarchy of medical decision-making
  • Fear of lacking opportunities to modify documents if wishes have changed before incapacitation occurs
• Barriers to open communication
  • Fear of being judged or causing distress to loved ones
  • Fear of conflict with loved ones or treating clinicians
  • Concerns about privacy and autonomy

Benefits of high-quality goals of care discussions ^[4]

Consider exploring the following patient-reported benefits of timely, open, and effective goals of care discussions to help balance fears, concerns, and other barriers:

• Increased sense of autonomy, empowerment, and control
• Support in self-reflection and organizing thoughts
• Increased feelings of being heard and respected
• Reduced anxiety about end-of-life care, especially if incapacitation is anticipated
• Ability to make difficult decisions while decision-making capacity is intact
• Reducing emotional burden for loved ones
• Increased ability to cope with the disease course