The inner journey: Distress and survival in people living with a life limiting illness

An article written by Felicity Bates and Geena Bennett

Exploring the journey

Palliative care is about more than managing symptoms — it’s about supporting people through one of life’s most difficult transitions. Yet in rural Australia, those living with a life‑limiting illness often face inequities in access to psychosocial support. Our preliminary study set out to explore the inner journey of distress in these communities, using the Death and Dying Distress Scale (DADDS) to track how fears and anxieties evolve over time. [1]

We followed individuals in three rural hospitals, measuring distress at multiple points and examining whether changes in distress were linked to how long a person could live with a life-limiting illness. [1]

What we learned from people living with serious illness

Distress levels were not constant — they followed a U‑shaped trajectory:

• Early stage of care: Distress peaked, with fears of suffering and pain most prominent.
• Mid and late stages: Distress declined, suggesting that ongoing care and support helped people adapt.
• Final 30 days before death: Distress rose sharply again, particularly around fears of suffering and pain.

Across all stages, fear of suffering and pain was consistently the greatest concern, while fear of sudden death was the least. People who felt more distressed tended to live for a shorter time. For every small increase in distress, survival time was about 7% shorter. But this doesn’t prove that distress caused the shorter survival - it only shows they were related.

The human significance

Our findings highlight the emotional weight carried by people living with a life‑limiting illness throughout their palliative journey. Distress is not just about fear of symptoms - but also reflects anticipation of the perception of these experiences, along with deeper concerns about identity, relationships, and meaning.

• Early in care, distress often peaks, this may be attributed to individuals being confronted with the reality that there are no further curative treatment options. Many describe feelings of hopelessness, a loss of control, and the painful awareness that they may be becoming a burden on loved ones. This stage is marked by uncertainty and the struggle to adjust to a new reality, where the focus shifts from fighting disease to managing decline.
• Near death, distress rises again, this may be attributed to people experiencing the physical decline more acutely. Loss of functionality means they often need extensive support with daily activities, which can be emotionally difficult for those who value independence. They feel themselves weakening, and alongside this physical decline comes death anxiety - worries about what dying will feel like, how others will cope after they are gone, and whether their suffering will be managed with dignity.

These experiences underscore that distress is not simply a clinical measure but a reflection of the profound human challenges faced at the end of life. Addressing these fears - of hopelessness, burden, decline, and death itself - is essential to providing care that is truly compassionate and person‑centred.

Moving forward together

Our study reinforces that palliative care must embrace the whole person - body, mind, and spirit. Future research should explore interventions that target distress at its peak stages, such as:

• Early support: Advance care planning, counselling, and guidance to reduce uncertainty.
• End‑of‑life support: Symptom management, existential counselling, and compassionate communication to ease fears of suffering.

Investing in rural psychosocial care - through telehealth, community programs, and clinician training - could help close the equity gap and ensure people receive the holistic care they deserve.

Ultimately, our research shows that the inner journey of distress is as important as the physical journey of illness. Recognising and responding to this emotional dimension is vital to delivering truly holistic palliative care.

Authors

Felicity Bates

Senior Pharmacist

Bellinger River District Hospital, Mid North Coast Local Health District

Geena Bennett

Student of Bachelor Medical Science/Doctor of Medicine

School of Medicine and Public Health, University of Newcastle