Why listening matters: My Aunty’s Cancer Story

For anything health-related, we should always think about what might be going on in the brain. Cancer isn’t just a physical battle; it profoundly impacts psychological and neurological well-being, both directly and indirectly. My Aunty’s story is a reminder of how important it is to look holistically at patients’ experiences and to integrate neuroscience principles and patient feedback into care.

A Story of Conflict

My Aunty Carol was a vibrant, kind, health-conscious but somewhat medication-avoidant woman in her early 70s. She had never had any major illness or surgery in her life. She started experiencing back pain which progressively worsened until one day the pain was so intense she had to be taken to hospital. Her world was turned upside down when she was diagnosed with an aggressive form of Multiple Myeloma (MM). The news was traumatic, it came as a shock and she was (understandably) terrified.

She’d never thought about her own mortality, she didn't want to know the specifics of her MM, hoping to shield herself from additional distress. However, her hesitation to take medications like bisphosphonates led her Myeloma consultant to reveal the grim details, which only deepened her trauma and bred distrust. She felt betrayed and deflated, a sentiment that lingered throughout her treatment.

The Neuroscience of trauma and impact of patient mindset

In situations of stress and trauma, our brains are working overtime to protect us. Our brain circuitry is designed to protect us from trauma. When traumatic events occur in our lives our brains activate specific neural pathways to protect us and these can be re-activated when our brain detects similar sensory signals (like smells, sounds, or sights). One outcome of these protective pathways is the blocking of memory formation so that you do not remember the event (1). If the traumatic event is particularly significant memory suppression may not be possible, it may even cause post-traumatic stress disorder (PTSD). PTSD isn't just for soldiers; it can happen to anyone- a mother giving birth(2) or someone experiencing cancer (cancer-related post-traumatic stress(3)).?

There have been a number of studies exploring the impact of patient mindset on cancer outcomes like health-related quality of life (HRQOL) which suggest more adaptive (flexible) mindsets may experience better quality of life(4). Interventions targeting patient mindset may help to teach patients better coping mechanisms thereby improving quality of life(5) and experiences of cancer care(6).

Challenges in treatment and communication

There were many horrible events she had to endure, like the painful spinal lesions, and the thick plastic back brace that locked her in from her chin to her bottom (making her feel like she was suffocating). The fear of paralysis if she didn’t comply with wearing the brace she hated, a topic she was often reminded of by the spinal specialist. Long waiting times for hospital appointments in chairs unsuitable for those in back braces, only exacerbating her pain and adding to her emotional burden.

One particular grievance was the metallic taste caused by a pre-made saline flushing solution for her PICC (peripherally inserted central catheter) line, not ideal when already feeling sick from cancer therapy. If asked, nurses were more than willing to prepare the solution manually, which avoided the aftertaste. This small adjustment made a significant difference but highlighted a larger issue: the cancer centre was missing valuable feedback from patients. Plus a "tough love" approach to patient compliance could be emotionally distressing for some patients, especially if it’s not balanced with wider emotional/psychological support.

Listening to patients (not just what they say but the broader context)

Accompanying my Aunty to her appointments, I focused on absorbing all the information she received, allowing her to concentrate on her emotional well-being and not worry if she couldn’t remember most of what she was told. The experience reminded me of how important it is for patients to have a network of family and friends who can support them, plus more holistic care (emotional and psychological care) in the clinic.

With the pressures of increasing patient numbers and overstretched cancer resources it is not surprising that some patients aren’t fully heard, especially those patients who appear to be ‘difficult’ or ‘non-compliant’. It is crucial to develop ways to be sensitive to trauma and truly “hear” patients even when they struggle to find the words.

By acknowledging the psychological and emotional trauma that accompanies physical illness, healthcare providers can offer more comprehensive and compassionate care. Incorporating neuroscience principles and actively seeking feedback from patients and anyone attending clinics with them can further enhance patient support, helping them navigate their journey with more resilience and hope.

This blog is dedicated to my amazing Aunty who passed away in November 2020

(1)??? Resilience after trauma: The role of memory suppression | Science

(2)??? Psychiatry.org - Maternal Mental Health: A Brief Look at the Impact of Birth Trauma

(3)??? Cancer-Related Post-Traumatic Stress - NCI

(4)??? Association of illness mindsets with health-related quality of life in cancer survivors - PubMed (nih.gov)

(5)??? Changing cancer mindsets: A randomized controlled feasibility and efficacy trial - PubMed (nih.gov)

(6)??? Empowering cancer patients to shift their mindsets could improve care, researchers argue | ScienceDaily