Existential Distress Presenting as Pain

Existential distress and pain is often termed "total pain" or "suffering".

It is a complex clinical symptom where non-physical suffering such as loss of meaning, fear of death, and isolation exacerbates physical pain and distress.

It is different from - but often overlaps with - depression and anxiety, and is commonly found in people with serious, chronic, or terminal illnesses entering into their final stages of life.

Signs and Symptoms:

People experiencing existential distress as pain may exhibit several distinct, and often non-verbal, indicators:

• Pain disproportionate to physical findings: Pain that does not respond to standard medications (e.g. opioids) or is inconsistent with the expected pathology and diagnosis

• Expression of existential distress themes: Complaints regarding a loss of meaning, purpose, or self-worth ("Why me?", "I am a burden," "I have no future")

• Profound isolation/loneliness: Feeling completely alone or abandoned, even when surrounded by loved ones or health care team members

• Fear and anxiety: Intense fear of the dying process, separation from family/whānau and friends, or loss of control and independence

• Withdrawal and hopelessness: Withdrawal from social relationships, lack of interest, or hopelessness

• Anger and guilt: Anger directed at family/whānau, staff, or higher powers, or profound feelings of guilt.

Distinctions in Clinical Care

• Not all spiritual needs are religious: Existential suffering can occur in both religious and non-religious people. Calling the local chaplain may not always be appropriate instead, checking with the person what gives them meaning, hope might be a better first step. Then you might be able to establish what is important for the person to find peace and comfort.

• Distinguish from depression: While they overlap, clinical depression focuses on a loss of pleasure, whereas existential suffering centres on a loss of meaning.

Practice Considerations for Care staff

Addressing existential pain requires shifting to a holistic approach, looking at the person as a whole and creating a therapeutic relationship.

Te Whare Tapa Wha, Māori health model, can help guide care. It considers not just the physical causes of pain, but potential imbalances in a person’s spiritual, emotional and family/social wellbeing that may contribute to pain and distress.

• Recognize "total pain": Understand that physical symptoms are part of a larger picture that includes spiritual, emotional and family /social well-being

• Validate and listen: Avoid trying to use medications to "fix" the pain immediately. Instead, use reflective listening, such as "It sounds like you are looking for meaning in all this," or "It seems like you feel very alone in this pain"

• Direct inquiries: Ask open-ended questions about what is bothering them most, such as "What is the hardest part about this for you?" or "What gives you strength when you feel like this?".

• Use assessment tools: Implement tools like the Distress Thermometer or specialized surveys to measure spiritual and existential suffering

• Provide presence: A calming, non-judgmental presence is often more therapeutic than attempting to provide answers. While maintaining professional boundaries, acknowledge that physical touch (e.g., holding a hand) can be profoundly therapeutic for someone facing intense isolation

• Monitor for suicidal intent: Existential distress can increase the risk of a desire for a hastened death or suicide; assess this risk if the patient expresses extreme hopelessness.

• Interdisciplinary referral: Involve palliative care teams, social workers, or spiritual counsellors.