How do I advise the family of an adult or elderly patient with a serious or life-altering condition?

How to Advise the Family of an Adult or Elderly Patient with a Serious or Life-Altering Condition

Initiate structured family conversations early in the course of serious illness using an organized framework, express empathy explicitly, and ensure families understand the patient's prognosis and goals of care through repeated assessment and confirmation. 1

Timing and Initiation of Family Discussions

• Begin end-of-life conversations within the first month of diagnosis of terminal illness or within 72 hours of ICU admission for critically ill patients. 1
• Readdress these discussions periodically based on clinical events, disease progression, or when the patient's condition changes. 1
• For patients with years-to-months life expectancy, discuss intent, goals, range of choices, benefits and risks of therapy, and potential effects on quality of life. 1
• For patients with months-to-weeks life expectancy, reassess understanding of goals of therapy and prognosis, then redirect goals and expectations to those that are achievable. 1

Structured Communication Framework

Use an organized approach such as the VALUE mnemonic during family conferences: 1

• Value family statements - Listen actively to what family members say
• Acknowledge family emotions - Make explicit empathic statements
• Listen - Use reflective listening and hold silences
• Understand the patient as a person - Ask about the patient's values and preferences
• Elicit family questions - Invite and address their concerns

This structured approach significantly reduces symptoms of PTSD, depression, and anxiety among family members at 90 days. 1

Essential Communication Techniques

Express empathy explicitly and frequently throughout conversations: 1, 2

• Make statements acknowledging the difficulty: "What you're going through is difficult" or "This is an incredibly hard situation." 1, 3
• Provide assurances of nonabandonment: "I will keep helping you, no matter what happens" or "We will not abandon your loved one." 1
• Assure comfort: "We will make sure your loved one is comfortable and not suffering." 1
• More empathic statements are significantly associated with higher family satisfaction with communication. 2

Use reflective listening to demonstrate understanding: 3

• Summarize what family members said using their own words: "Tell me if I have this right..." or "What I heard is that..." 3
• Hold silences until family members are ready to continue speaking. 3
• Begin with open-ended questions: "Tell me what's been going on" or "What's been the hardest for you?" 3

Assessing and Confirming Understanding

Explicitly confirm the family's understanding of the patient's condition—do not assume they understand just because you discussed it: 1, 4

• Ask families what they understand about the medical situation before providing new information. 1
• For patients with incurable disease, specifically confirm understanding of incurability. 1
• Check understanding frequently using "teach back" methods: ask family members to explain back what they heard. 1, 3
• Patients and families who do not understand prognosis may desire aggressive treatments that are futile and toxic. 1

Exploring Patient Values and Family Goals

Assess patient wishes, values, and preferences through conversations with family members: 1

• Ask: "What did your loved one say about situations like this?" or "What was most important to them?" 1
• Explore how culture, religion, or spiritual belief systems affect end-of-life decision making. 1
• Document the surrogate decision maker and encourage completion of advance directives early in the course of disease. 1
• Inquire about family members unable to attend and consider offering teleconference for people important to the patient. 5

Frame treatment decisions in the context of the patient's goals: 1

• Ask families to define their goals in light of the medical situation: "What is most important to you now?" or "What are your priorities?" 1
• Align patient goals, values, and care preferences with treatments and services offered. 1
• For patients with limited life expectancy, redirect hopes to achievable goals rather than cure. 1, 4

Discussing Prognosis and Treatment Options

Provide prognostic information in small amounts using plain language, and check understanding frequently: 1

• Ask permission before sharing difficult news or significant changes in treatment plan. 1
• Describe benefits and burdens of treatment options, including frequency of clinic visits, hospital stays, and adverse effects. 1
• Discuss all treatment options including clinical trials, palliative care, and hospice. 1
• For patients with months-to-weeks life expectancy, emphasize that the focus shifts from prolonging life to maintaining quality of life. 1

Preserve hope while being honest: 1

• Focus on what can be done rather than what cannot. 1
• Use "I wish" statements to acknowledge hope without raising false expectations: "I wish I had better options." 3
• Acknowledge uncertainty when appropriate. 1
• Explain that any initial improvement may be transitory and is a trigger for continued observation, not necessarily an indication of improved prognosis. 1

Practical Logistics of Family Meetings

Ensure appropriate participants and environment: 1

• When possible, ensure patients, their designated surrogates, desired medical professionals, and key family members are present. 1
• Designate a single point of contact and limit the number of staff members to avoid confusion. 3
• Sit at eye level when possible to demonstrate you are not rushed and have time for them. 3
• Include social workers, palliative care specialists, and chaplains in interdisciplinary meetings to improve family satisfaction. 1

Document and follow up: 1, 5

• Document end-of-life conversations in the medical record immediately, including discussions about treatment options and preferences. 1, 5
• Summarize the conversation and establish a plan for the future. 1
• Provide regular information updates to the family about the patient's condition, degree of suffering, and anticipated changes. 1

Supporting Family Members

Provide comprehensive support beyond medical information: 1

• Allow and encourage family members to be with the patient—an opportunity to say goodbye is critically important. 1
• Offer family education programs to reduce anxiety, depression, post-traumatic stress, and generalized stress. 1
• Provide leaflets with information about the ICU setting to reduce family anxiety and stress. 1
• Refer families to psychosocial team members (social workers, counselors, psychologists, psychiatrists, clergy) when appropriate. 1
• Offer spiritual support from a chaplain to meet expressed desires for spiritual care. 1

Address emotional responses and grief: 1

• Recognize and respond empathically to grief and loss among patients and families. 1
• Listen to family concerns, attend to grief and physical/psychological burdens, and be aware of any perceived feelings of guilt. 1
• Provide supportive care including attention to how family members can help (being with, talking to, touching the patient, providing mouth care). 1

Common Pitfalls to Avoid

• Never assume families understand prognosis just because you discussed it—explicitly confirm their understanding. 1, 4
• Do not decouple the conversation about withdrawal of life-sustaining treatment from acceptance of futility before approaching families about organ donation. 1
• Avoid providing information when family members are highly emotional, as they may not process it well—address emotions first. 3
• Do not tell families how they "ought to feel" or minimize their concerns. 3
• Avoid medical jargon—use simple, easy-to-understand language. 1, 6
• Do not make comparisons with your own experiences, as this shifts focus away from their concerns. 3

After the Patient's Death

Offer bereavement support and follow-up: 1

• Provide a written bereavement brochure to reduce family anxiety, depression, and post-traumatic stress. 1
• Offer families the opportunity to meet with care providers after death to express grief and discuss any outstanding concerns about care delivered in the last days of life. 1