End-of-Life Care and Goals of Care

Medical School · Year 4 · Subinternship Medicine · includes a quiz and discussion video

End-of-Life Care and Goals of Care

Year 4: Sub-Internship Medicine

Caring for patients at the end of life represents one of the most profound responsibilities in medicine, requiring clinical expertise, communication skills, and emotional intelligence. This seminar provides a comprehensive framework for conducting goals of care conversations, managing symptoms at end of life, and supporting patients and families through the dying process. The emphasis is on developing the skills to provide compassionate, patient-centered care that honors individual values and preferences during the final phase of life.

Learning Objectives

Conduct effective goals of care conversations by eliciting patient values, providing honest information, and making appropriate recommendations
Communicate prognosis honestly and compassionately while maintaining hope and supporting patient coping
Manage common symptoms at end of life including pain, dyspnea, nausea, and delirium using appropriate pharmacologic and non-pharmacologic approaches
Navigate code status discussions by presenting options clearly and making recommendations aligned with patient goals
Recognize signs of imminent death and support the dying process with appropriate interventions and family guidance
Support families through anticipatory grief and bereavement with empathy and appropriate resources

Goals of Care Framework

Goals of care encompass the range of treatment objectives that patients may prioritize. Curative goals aim to eliminate disease entirely and restore the patient to their previous health state. Life prolongation goals aim to extend survival even when cure is not possible. Function preservation goals prioritize maintaining independence and the ability to do meaningful activities. Symptom control goals focus on comfort and quality of life. Preparation goals involve putting affairs in order, achieving closure, and preparing for death. Support goals address the needs of family and loved ones. Most patients hold multiple goals simultaneously, with priorities that may shift over the illness course.

Knowing when to initiate goals of care discussions helps ensure conversations occur at appropriate times. Serious diagnosis of cancer, organ failure, or other life-limiting illness warrants discussion. Significant decline in functional status suggests disease progression. Repeated hospitalizations indicate poor disease control and trajectory. Poor prognosis with limited expected survival makes discussion urgent. Patient or family questions about the future indicate readiness. Code status documentation requirements provide an opportunity for broader discussion.

Identifying who should be present for goals of care discussions ensures appropriate participation. The patient, when possessing decision-making capacity, is the primary participant and decision-maker. The surrogate decision-maker participates when the patient lacks capacity. Family members provide support and serve as witnesses to expressed preferences. The attending physician should lead the discussion with expertise on medical options. The sub-intern may participate to observe and learn. Chaplain or social worker involvement may be appropriate for spiritual or psychosocial needs.

Setting the stage creates an environment conducive to difficult conversations. A private space free from interruptions is essential. Adequate time should be allowed without appearing rushed. Seating should be at eye level and close enough for personal connection. Tissues should be available in anticipation of emotional responses. Cell phones and pagers should be silenced or delegated. The team should be coordinated to present a unified message.

Communication Skills

The SPIKES protocol provides a framework for delivering serious news. Setting involves preparing the environment and mentally preparing oneself. Perception assessment asks what the patient already understands about their situation. Invitation asks how much information the patient wants to receive. Knowledge delivery provides information in clear, understandable language. Emotions are addressed through empathic response. Strategy and summary close the conversation with a plan and next steps. This structured approach ensures that important elements are not overlooked.

Asking permission respects patient autonomy and prepares them for difficult information. Open invitation language includes phrases such as "Would it be okay to talk about what to expect going forward?" Assessing readiness recognizes that some patients want detailed information while others prefer less. Respecting boundaries allows patients to defer discussion when they are not ready. Including family requires asking patients whether they want family present for these discussions.

Delivering bad news requires balancing honesty with compassion. A warning shot prepares the patient, using phrases such as "I'm afraid I have serious news to share." Simple language avoids medical jargon that patients may not understand. Pausing after delivering information allows time for emotional processing. Checking understanding invites questions and confirms comprehension. Expressing empathy acknowledges the difficulty of what the patient is hearing.

Responding to emotion is essential when delivering serious news. Silence should be allowed without rushing to fill it with more information. Tears warrant offering tissues and maintaining a calm, supportive presence. Anger should be acknowledged without becoming defensive or taking it personally. Denial should be explored gently without confrontation. Fear should be met with reassurance about continued presence and support.

Prognosis Communication

Prognostic awareness exists on a spectrum that should be assessed before providing information. Unaware patients do not understand the severity of their illness. Partially aware patients understand their illness is serious but may not recognize it as terminal. Fully aware patients understand they are dying. Accepting patients are at peace with their prognosis. Planning patients are actively making preparations for death. Assessing where patients fall on this spectrum guides how to approach prognosis discussions.

Sharing prognosis requires honesty balanced with sensitivity. Asking first what the patient has been told and understands establishes baseline awareness. Offering to discuss prognosis respects patient autonomy about receiving information. Framing acknowledges uncertainty while being honest, using phrases such as "I'm hoping for the best, but I'm worried that..." Being honest avoids providing false hope that may interfere with planning. Giving ranges such as "days to weeks" or "weeks to months" acknowledges prognostic uncertainty while providing useful guidance.

Managing uncertainty is inherent in prognostic discussions. Acknowledging uncertainty honestly uses language such as "We cannot predict exactly how long." Preparing for various outcomes suggests "hoping for the best while preparing for what may come." Reassuring about continued presence commits to ongoing care regardless of outcome. Revisiting as things become clearer sets expectation for ongoing conversation.

Maintaining hope remains important even in terminal illness. Reframing hope toward achievable goals shifts from cure to comfort, peace, and quality time. Short-term achievable goals provide concrete objectives. Meaning-focused hope emphasizes quality of remaining time. Presence hope focuses on time with loved ones. Legacy hope emphasizes the mark the patient will leave.

Code Status Discussions

Terminology should be clarified for patients and families. Full code means all resuscitation measures will be attempted including CPR and defibrillation. DNR or DNAR means no CPR or defibrillation will be performed if the heart stops. DNR/DNI adds that intubation and mechanical ventilation will not be performed. Comfort measures only indicates that the focus is entirely on symptom control without life-prolonging interventions. POLST or MOLST forms translate preferences into actionable medical orders that transfer across care settings.

Discussing CPR requires honest presentation of outcomes. Context should frame the discussion around what would happen if the heart were to stop. Outcomes should be presented realistically, with survival rates varying significantly by patient population and condition. The burden of CPR including chest compressions, rib fractures, and potential intubation should be explained. Alternatives should describe what care would be provided instead of CPR. When appropriate, a recommendation should be made based on the medical situation and patient goals.

CPR outcomes vary dramatically by clinical context. In-hospital cardiac arrest has approximately 25 percent survival to discharge in general populations. Patients with metastatic cancer have 5 to 10 percent survival. Elderly patients with multiple comorbidities have 5 to 10 percent survival. Nursing home residents have less than 5 percent survival. Among survivors, the proportion with intact neurologic function is lower still. These statistics inform realistic discussions.

Making recommendations is appropriate and often helpful. Value-based recommendations connect to expressed patient preferences, such as "Given what you've told me about wanting to avoid prolonged hospitalization..." Medical reality-based recommendations acknowledge the clinical situation, such as "Given how sick you are, CPR would be unlikely to be successful." Clear recommendation statements express professional opinion, such as "I recommend we focus on keeping you comfortable." Reassurance that DNR does not mean abandonment emphasizes that care continues with a different focus.

Symptom Management at End of Life

Pain management is a priority in end-of-life care. Assessment should ask about location, severity, and quality of pain. Opioids including morphine and hydromorphone are the mainstay of treatment. Scheduled dosing provides around-the-clock control rather than reactive treatment. Breakthrough dosing addresses acute pain episodes between scheduled doses. Adjuvant medications including NSAIDs, steroids, and gabapentin address specific pain mechanisms. Routes should be adjusted to IV or subcutaneous when patients cannot swallow.

Dyspnea management addresses one of the most distressing symptoms at end of life. Opioids at low doses effectively relieve the sensation of breathlessness. Oxygen is provided if the patient is hypoxic, though it may not relieve dyspnea in non-hypoxic patients. A fan providing airflow across the face can significantly reduce dyspnea sensation. Positioning upright and supported optimizes respiratory mechanics. Anxiolytics may help when anxiety accompanies dyspnea.

Nausea and vomiting require treatment tailored to the underlying cause. Ondansetron is effective for general nausea. Prochlorperazine provides broad antiemetic coverage. Haloperidol is particularly effective for opioid-induced nausea. Metoclopramide addresses gastroparesis and delayed gastric emptying. Dexamethasone helps with nausea from increased intracranial pressure or bowel obstruction.

Delirium and agitation are common in dying patients. Environmental management includes maintaining a quiet, calm environment with family presence. Haloperidol at low scheduled doses is first-line pharmacologic treatment. Benzodiazepines may be added if haloperidol alone is ineffective, particularly for agitation with anxiety. Treating reversible causes such as constipation, urinary retention, or medication effects may improve symptoms. Family education helps them understand that delirium is part of the dying process and does not necessarily indicate suffering.

The Dying Process

Signs of imminent death help families understand what to expect. Decreased intake manifests as not eating or drinking, which is normal and should not be forced. Increased sleep and difficulty arousing reflect declining energy and consciousness. Mottling of the skin shows purplish discoloration particularly on the extremities. Breathing changes include Cheyne-Stokes pattern with periods of apnea alternating with hyperpnea, and agonal breathing near death. Decreased urine output reflects shutdown of organ function. Cooling of extremities indicates peripheral circulatory shutdown.

Death rattle, the gurgling sound from secretions in the throat, is distressing to families but likely not to patients. Explanation should reassure families that this is normal and does not indicate drowning or choking. Reassurance that the patient is likely not distressed by the sound, as it occurs when consciousness is decreased, is helpful. Positioning the patient on their side may reduce the sound. Medications including glycopyrrolate and scopolamine dry secretions. Suctioning is usually not helpful and may stimulate more secretion production.

Family presence during dying should be encouraged and supported. Encouraging presence acknowledges that being with the dying person is meaningful even when they cannot respond. Normalizing leaving gives permission for family to step away briefly without guilt. Explaining that hearing may persist encourages talking to the patient as hearing may be the last sense to go. Touch through holding hands or gentle contact provides comfort. Permission to let go acknowledges that some patients seem to wait for family permission to die.

Pronouncement of death follows recognition that death has occurred. Confirmation includes absence of pulse, absent respirations, and fixed pupils. The time of death is documented. A pronouncement note is completed in the medical record. The attending physician and family are notified. Time with the body should be offered to family members who wish it. Death certificate completion follows institutional procedures.

Palliative Care Consultation

Knowing when to consult palliative care optimizes care for patients with serious illness. High symptom burden with uncontrolled pain, dyspnea, or other distressing symptoms benefits from palliative care expertise. Goals clarification when prognosis is uncertain or goals are unclear helps align treatment with patient values. Complex decisions weighing aggressive treatment against comfort benefit from facilitated discussion. Family conflict with disagreement among decision-makers may require skilled mediation. Psychosocial distress including anxiety, depression, or existential suffering benefits from comprehensive support. Transition to hospice involves coordination and family preparation.

The distinction between palliative care and hospice is important for appropriate referral. Palliative care is appropriate at any stage of serious illness, while hospice requires a prognosis of less than six months. Palliative care can be provided alongside curative treatment, while hospice typically involves forgoing curative measures. Palliative care can be provided in any setting, while hospice is usually provided at home or in a hospice facility. Palliative care is covered by regular insurance, while hospice is covered by the Medicare hospice benefit with specific requirements. Both focus on quality of life, with hospice specifically addressing end-of-life care.

Hospice eligibility requires meeting specific criteria. Prognosis of less than six months is the Medicare requirement, determined by physician judgment. Goals must be comfort-focused rather than curative. The patient typically forgoes curative treatment for the terminal diagnosis, though this varies by hospice program. Physician certification documents the prognosis and eligibility. Recertification at regular intervals confirms continued eligibility.

Hospice services provide comprehensive support. Nursing includes regular home visits for symptom management and patient assessment. Physician oversight comes from the hospice medical director. Aide services provide personal care assistance. Social work addresses psychosocial support and practical needs. Chaplain services provide spiritual care. Bereavement services support family members after the patient's death. Equipment including hospital bed, oxygen, and supplies is provided. Medications related to the terminal diagnosis are covered.

Family Support

Family meetings bring stakeholders together for shared understanding and planning. The purpose is to align the patient, family, and medical team around a common understanding and plan. Participants include key decision-makers, ideally including the patient when possible. Structure follows a pattern of providing medical update, listening to family perspective, and developing a shared plan. Questions should be answered honestly with acknowledgment of uncertainty. Documentation of the meeting in the medical record ensures continuity and communication.

Surrogate decision-making standards guide decisions when patients cannot speak for themselves. Substituted judgment asks what the patient would want based on known values and expressed preferences. Best interest standard applies when patient wishes are unknown, seeking what would benefit the patient most. Advance directives provide written guidance from the patient. Durable power of attorney for healthcare designates a specific proxy decision-maker. Default surrogate hierarchy is defined by state law when no designated proxy exists.

Family conflict requires skilled management. Identifying the source of disagreement helps target interventions. Exploring individual perspectives allows each family member to feel heard. Finding common ground identifies shared values and goals. Allowing time for processing recognizes that families may need time to reach consensus. Seeking support from ethics consultation, chaplaincy, or social work may help resolve persistent conflict.

Self-care guidance for families recognizes the toll of caregiving. Rest should be encouraged with permission to take breaks without guilt. Eating regularly should be reminded as caregivers often neglect themselves. Accepting help from others provides practical and emotional support. Preparing practical matters in advance reduces stress during and after death. Beginning grief is normal, as anticipatory grief often starts before death.

Cultural Considerations

Cultural variation affects end-of-life care preferences in multiple domains. Truth-telling practices vary, with some cultures preferring to protect patients from distressing information. Decision-making may be individual or family-based depending on cultural norms. Emotion expression ranges from stoic to highly expressive across cultures. Body care after death involves specific rituals and timing in many traditions. Autopsy may be prohibited or strongly discouraged in some cultures.

Religious considerations shape end-of-life care. Catholic patients may request last rites and the sacrament of the anointing of the sick. Jewish patients may want a shomer (guardian) to stay with the body and prompt burial. Muslim patients may wish to face Mecca and have the body washed according to religious tradition. Buddhist patients often prefer a peaceful, quiet environment for dying. Hindu patients may have specific rituals and typically prefer cremation.

Communication across cultures requires cultural humility. Asking about decision-making preferences, such as "How does your family make important decisions?" elicits cultural norms. Listening to understand the family's perspective opens communication. Using interpreters when language barriers exist ensures accurate communication. Involving chaplains for spiritual needs provides appropriate support. Maintaining flexibility allows adaptation of approach to family preferences.

Avoiding assumptions prevents stereotyping and honors individuality. Each family is different regardless of cultural background. Direct inquiry about preferences is more accurate than assumptions based on culture. Respect for practices that differ from the clinician's own values is essential. Curiosity without judgment creates space for families to share their needs.

Professional Considerations

Emotional impact of caring for dying patients is normal and expected. Sadness and grief for patients is a natural response to loss. Relief when suffering ends is appropriate and does not indicate lack of caring. Inadequacy and questioning whether more could have been done is common. Avoidance of emotional engagement, while tempting, may interfere with compassionate care. Connection through meaningful relationships with patients is one of the rewards of this work.

Coping strategies support sustainable practice. Debriefing with colleagues provides emotional support and shared processing. Reflection through journaling or quiet time allows individual processing. Work-life balance with appropriate boundaries protects personal relationships and energy. Seeking support when struggling, whether from peers, mentors, or professional resources, is a sign of strength. Finding meaning in the work connects daily tasks to larger purpose.

Boundaries protect both clinicians and patients. Professional relationships remain appropriate without becoming overly personal. Emotional boundaries involve engaging genuinely while managing one's own grief. Time boundaries ensure sustainable practice without burnout. Physical boundaries include appropriate self-care including sleep, nutrition, and exercise. Saying no when overwhelmed protects quality of care for all patients.

Learning from death improves future care. Morbidity and mortality review asks whether death was expected and care appropriate. Reflection on what went well reinforces effective practices. Identification of what could be better generates improvement opportunities. Education through sharing lessons with team members spreads learning. Personal growth emerges from the privilege of accompanying patients through their final days.

Summary

Goals of care conversations should explore patient values through open-ended questions before making medical recommendations. Communication using the SPIKES protocol ensures systematic delivery of serious news with empathic response to emotion. Prognosis should be communicated honestly while maintaining hope through reframing toward achievable goals. Code status discussions should occur in the context of broader goals conversations, with realistic presentation of CPR outcomes and recommendations aligned with patient values.

Symptom management at end of life prioritizes comfort through opioids for pain and dyspnea, antiemetics for nausea, and environmental and pharmacologic management of delirium. The dying process includes predictable signs of imminent death that families should understand, including decreased intake, mottling, and breathing changes. Hospice provides comprehensive services for patients with prognosis less than six months who choose comfort-focused care.

Family support includes facilitated family meetings, guidance for surrogate decision-making, and management of family conflict. Cultural and religious considerations should be explored through direct inquiry rather than assumptions. Professional self-care through debriefing, reflection, and boundaries supports sustainable practice. Through compassionate communication and skilled symptom management, clinicians can help patients and families navigate the end of life with dignity and comfort.

Key Terms

Goals of care: Patient preferences for treatment intensity and objectives, based on individual values regarding quality and quantity of life.

Palliative care: A medical specialty focused on improving quality of life for patients with serious illness through symptom management, communication, and support.

Hospice: A model of care for patients with prognosis less than six months who choose comfort-focused care, covered by the Medicare hospice benefit.

DNR/DNAR: Do Not Resuscitate order indicating that CPR should not be attempted if the patient's heart stops.

POLST: Physician Orders for Life-Sustaining Treatment, a standardized form that translates patient preferences into actionable medical orders.

Surrogate: A person authorized to make medical decisions for a patient who lacks decision-making capacity.

Substituted judgment: The standard for surrogate decision-making based on what the patient would have wanted.

Death rattle: The gurgling sound caused by secretions in the throat of a dying patient, typically occurring when consciousness is decreased.

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