Grief-Sensitive Communication: Patients and Their Supporters

Anticipatory Grief and Ambiguous Loss

Sometimes grief begins before a loss has occurred. This is known as anticipatory grief. From the moment a potential loss becomes visible, it is natural for individuals and families to begin grieving. Awareness that a loss may be coming does not mean a person feels prepared when it happen and grieving in advance does not make grief after a loss easier. 

I knew without a doubt that Dan was dying. But even when he did die…it’s just so shocking that someone that I had lived half my life with was gone.

Darin Jensen / Bereaved Spouse

This kind of grief often overlaps with ambiguous loss, which occurs when a loss is unclear, incomplete, or unresolved. This can include situations in which someone is physically present but psychologically changed, such as with dementia, brain injury, addiction, or mental illness, or when the future of a relationship, role, or identity feels uncertain. 

Grieving without a clear loss event can heighten distress and make the experience harder to name or explain. These experiences may arise in many contexts, including serious diagnosis, progressive illness, aging, addiction, or an upcoming military deployment. 

Examples of Anticipatory Grief and Ambiguous Loss

Neurological and Cognitive Conditions

  • Dementia (e.g., Alzheimer’s disease)
    The person may be physically present but psychologically absent in meaningful ways. 
  • Traumatic Brain Injury (TBI)
    Significant changes in cognition, behavior, or independence can create a sense of loss for both the individual and their support people. 
  • Stroke with Cognitive or Personality Changes
    When strokes result in aphasia, executive dysfunction, or mood changes, family members may grieve the loss of familiar communication, roles, or relational dynamics.

Mental Health and Substance Use

  • Mental Illness (e.g., Schizophrenia, Bipolar Disorder, Severe Depression)
    During periods of crisis or instability, loved ones may experience repeated losses of connection, predictability, or shared reality. 
  • Substance Use Disorder (SUD)
    Care partners and close connections often experience a rollercoaster of presence and absence. 
  • Eating Disorders
    Supporters may experience ongoing loss when a person's identity, personality, or physical appearance changes drastically due to illness.

Medical and Developmental Conditions

  • Prolonged Disorders of Consciousness (e.g., coma, vegetative state)
    The person’s body remains present while awareness may be severely or permanently impaired, often without a clear or predictable outcome.
  • Progressive Neuromuscular Conditions (e.g., ALS, MS)
    Changes in physical function over time may bring grief related to anticipated losses in independence, roles, and identity..
  • Prematurity and Complex Neonatal Conditions
    Parents may grieve the loss of a typical pregnancy or early bonding experience while facing uncertainty about their child’s health and development.
  • Developmental Disabilities (e.g., autism, intellectual disability)
    Some caregivers may grieve altered expectations or imagined futures, particularly following diagnosis.

Relational and Situational Losses

  • Parental Estrangement or Loss of Custody
    Parents may grieve the loss of a living child they no longer have access to due to court decisions or family conflict.
  • Medical Care Transitions (e.g., moving to long-term care, hospice)
    Patients and families may grieve the loss of independence or identity during care transitions, even while the person remains alive.
  • Incarceration or Detainment
    Families often face social stigma and emotional pain related to separation, loss of shared routines, and uncertainty about the future.

Permission to Grieve

Because grief is often associated with death, patients and families may not recognize that what they are experiencing is grief when a loss is ongoing, uncertain, or non-death related. Validation and permission to grieve can be especially meaningful, especially when offered by a healthcare professional. 

Naming grief helps normalize emotional responses, provide context for the experience, and support patients and their care networks in connecting with appropriate resources and support.

Practical Application: Grief-Sensitive Language for Anticipatory Grief and Ambiguous Loss

When losses are ongoing or unclear, naming the grief can be deeply validating.

Scenario: A family member of a patient with dementia expresses confusion about their emotions as they witness ongoing changes in memory, personality, and connection.

Grief-sensitive language you might use: "Grief isn't limited to death. It makes sense to grieve what is changing, even though your person is still alive."

Scenario: A patient struggles with sadness and anxiety as their cancer treatment continues but the future feels increasingly uncertain.

Grief-sensitive language you might use: “This isn’t the future you were imagining. It’s understandable to grieve both what you’re facing now and the loss of what you had hoped for.”

Scenario: A parent expresses sadness about their child’s premature birth and concern about what this may mean for their child’s care and development.

Grief-sensitive language you might use: “It’s possible to feel grateful for your child and still feel sadness or frustration that their birth didn't happen the way you had envisioned. Holding grief and hope at the same time is very common in situations like this.”

The Same Principles Apply

Anticipatory grief and ambiguous loss are real, valid forms of grief and can be just as painful as grief after death. They often involve uncertainty, prolonged adjustment, and emotional fatigue, and they benefit from the same grief-sensitive approaches as other losses. By naming these experiences, validating emotions, and avoiding pressure to “stay positive” or “move on,” healthcare professionals can help patients and families feel seen, supported, and less alone as they navigate ongoing loss.