How to Discuss Hospice with a Terminally Ill Relative
Introduce hospice early in terminal illness by aligning the patient's and family's stated goals with the specific services hospice provides, using concrete language that connects their fears and needs to hospice solutions. 1
Timing: Start the Conversation Early
Begin discussing hospice and palliative care options early in the course of terminal illness, not waiting until the final weeks or days. 1 Studies show that delaying these conversations until the last month of life—or avoiding them entirely—is a common pitfall that prevents families from accessing beneficial services and increases distress. 1
Recognize that families often need multiple conversations over time as the disease progresses; this is not a one-time discussion. 2
Preparation: Know Your Audience
Determine what the patient and family already understand about the prognosis and whether they recognize that death is approaching. 2 Many families harbor unrealistic expectations about recovery that must be gently addressed before hospice can be meaningfully discussed.
Identify the family's cultural and spiritual context, as some cultures view discussing death as taboo or "airing dirty laundry," while others have strong beliefs about institutional care. 1 Use tools like FICA (Faith and Belief, Importance, Community, Address in Care) to assess spiritual factors that influence decision-making. 1
Assess whether the patient is ready for this discussion by watching for verbal and nonverbal cues. 1 If the patient shows resistance, acknowledge this and offer to revisit the conversation later.
The Conversation Framework: Goals Before Services
First explore the patient's and family's goals, fears, and service needs before introducing hospice as a solution. 1 This goal-centered approach is more effective than leading with "hospice" as a label.
Step 1: Explore Goals and Concerns
Ask open-ended questions about what matters most to the patient: "What are your biggest concerns right now?" "What would a good day look like for you?" 3, 4
Listen more than you talk—active listening provides powerful support and helps you understand their priorities. 5
Identify specific fears such as pain, being a burden, dying in the hospital, or losing control. 1
Step 2: Align Goals with Hospice Services
Use concrete, specific language that directly connects their stated goals to what hospice provides. 1 For example:
"I understand you don't want to spend any more time in the hospital, but you're scared about pain control at home. There's a program called hospice that can help you stay at home and manage your pain and other symptoms." 1
"You mentioned wanting to focus on quality time with your grandchildren. Hospice can provide support so you have more energy for what matters most, rather than spending it on hospital visits." 1
This framing avoids the common pitfall of presenting hospice as "giving up" and instead positions it as actively pursuing the patient's goals. 6
Address Family Members Separately When Needed
Recognize that family members' openness to hospice may differ from the patient's, and address this directly. 1 Some relatives may be more ready than the patient, while others may resist even when the patient is accepting.
With the patient's permission, include key family members in discussions, either in person or by phone if they cannot be present. 1
Validate family members' grief, anxiety, and feelings of loss without judgment, explicitly acknowledging that they are grieving the gradual loss of their relationship with the patient. 2, 5
What to Say and What Not to Say
Effective Communication Strategies:
Be open and honest about the prognosis while remaining empathetic and sensitive to the family's emotional readiness. 3 Align information delivery to their pace of uptake and coping. 3
Use clear, understandable language and avoid medical jargon. 3 Replace terms like "terminal weaning" with "focusing on comfort."
Emphasize what will continue, not just what will stop. 1 Families need reassurance about ongoing symptom management, emotional support, and dignity-preserving care.
Express genuine concern and acknowledge the loss directly, being authentic rather than trying to "cheer up" the family. 5
Critical Pitfalls to Avoid:
Never use "at least" statements that minimize the loss (e.g., "At least they lived a long life"). 5 These focus on your discomfort rather than helping the bereaved.
Avoid instructing people to hide emotions or claiming to know exactly how they feel. 5
Don't compare your personal losses to theirs, as this shifts attention away from the patient and family. 5
Never assume families understand that hospice doesn't mean abandonment—explicitly state that hospice provides intensive support and that you will remain involved. 1
Practical Next Steps
Identify and suggest specific local hospice resources, providing names and contact information. 1
Offer to facilitate an introductory meeting with a hospice team so the family can ask questions without committing. 7
Refer families to the Alzheimer's Association (for dementia patients), support groups, and bereavement services as appropriate. 2
Document the goals of care discussion in the medical record and establish a plan for follow-up. 1
Ongoing Support
Schedule regular follow-up conversations to reassess the situation and provide continued support as the family's needs evolve. 2 Communicate your ongoing availability, as families need to know they can reach you with questions or concerns. 5
Recognize different presentations of grief among family members and refer to psychosocial team members (social workers, counselors, chaplains) when appropriate. 1
After the patient's death, send formal condolences and offer debriefing meetings to review what happened and answer lingering questions. 5, 8