Living with advanced cancer whilst navigating the health system

A blog post written by Jade Newton, an author from our Latest Australian Research series

There is limited research on the Australian experience of navigating advanced cancer care. As we make advances in the treatment of cancer, we need to to ensure people with advanced cancer can experience good quality of life in conjunction with longer survival. Understanding patient experiences navigating the health system provides a foundation for identifying how to improve the way existing resources meet patient needs.

In early 2020, we interviewed 23 adults to learn more about their experiences living with advanced cancer. Three major themes emerged in these interviews:

1. Living with a life-limiting diagnosis and uncertainty

All participants were aware of their incurable cancer diagnosis, and many were receiving palliative treatment. They used a variety of methods to cope with the uncertainty of their prognosis, including reframing, milestones, and maintaining autonomy by finding areas of their life they could control. In addition to personal coping strategies, their family, friends and health professionals had a significant impact on living with uncertainty. One participant greatly appreciated their sister’s emotional support and credited  this support with being able to cope well with their prognosis.

“You know sometimes you feel like a burden on family and friends, It’s nice to have someone who sort of shakes you out of that ... it's sort of helped me stay positive and strong.” (P010)

2. Living with symptom burden and side effects

All participants reported experiencing a range of symptoms they attributed to their treatment or diagnosis. Interestingly, not all reported using or being referred to palliative care. Several were instead “frightened” by the prospect of engaging with palliative care health professionals, stating that “palliative care was only something I’d ever heard of at the end of people’s lives.” (P021). 

3. Living within the health system

Participant experiences navigating the health system greatly varied. We identified two common factors that influenced whether they viewed their experience positively: The patient-clinician relationship, and care coordination. 

3.1 The patient-clinician relationship

Some participants reported great relationships with their clinicians, who were actively considering the psychosocial ramifications of their diagnosis and had referred them to a clinical psychologist:

“I didn’t think about [it] at the time, but I realised that [my oncologist] knew that at some stage there wasn’t going to be a good scan and [they] knew I wasn’t going to cope …[They’ve] got great foresight.” (P021)

Others reported having strained relationships with their clinicians, which placed great stress on them:

“I did not find much joy talking to the doctors. To me, to get better somebody has to show you [they] are caring about you … if you don’t have any caring attitude from the doctor, you think [they] are not interested in me because [they] think I am going to die in six months’ time.”(P025).

3.2 Care coordination

Some participants needed to attend multiple hospitals or hospital departments for their care; and reported difficulty being their own advocate when juggling their treatment and symptom burden.

“I had to fight to get pain relief. And even then it was between the [GP] and the urologist, it was like I was the meat between the sandwich. She does it, he does it, she does it… It was an awful position to be in.” (P020).

Practical actions  can improve the experience of people living with advanced cancer. This can include  supporting initiatives to improve patient-clinician communication, and reviewing the staffing of roles that assist in the coordination of cancer care (e.g. social workers, care coordinators and patient navigators). Action is necessary to ensure that we not only treatpeople with advanced cancer to enable them to  live longer,  but that we also support  them to live well.

Reference: Newton, J.C., O’Connor, M., Saunders, C. et al. “Who can I ring? Where can I go?” Living with advanced cancer whilst navigating the health system: a qualitative study. Support Care Cancer 30, 6817–6826 (2022). https://doi.org/10.1007/s00520-022-07107-1
 

Jade Newton 
PhD Candidate 
Curtin University