People with cancer face many challenges in their healthcare that go beyond their initial diagnosis.
This may include trying to understand their illness, confusion about treatments, not knowing what their rights are, and feeling like they are being treated like an objective ‘cancer case’ rather than a person. In many instances, patients may feel frightened, unsupported and alone, and not know who to turn to for help.
These experiences can be exacerbated in cases of very rare cancers, or cancers the patient has never heard of before.
While clinical cancer treatments are being improved all the time, research shows that delivering ‘patient-centred cancer care’ can also lead to improved outcomes and better quality of life for patients.
For example, oncologist and researcher Dr. Ethan Basch from the UNC School of Medicine in North Carolina, says the simple exercise of giving patients questionnaires to fill out between doctor visits about how they are feeling not only helps reduce symptoms and hospitalisations, but it can also help patients to live longer.
Let's look at what patient-centred care is and why it’s so important for people with cancer.
What is patient-centred cancer care?
Patient-centred cancer care puts the patient at the heart of their cancer healthcare. It is also sometimes called ‘person-centred cancer care’.
The Cancer Institute NSW refers to it as the delivery of “quality cancer care that is driven by patient needs”.
The Victorian Government's Better Health Channel says patient-centred care in general (not just cancer) is more than just about how a patient is treated by their healthcare professional. It’s also about how healthcare services “put healthcare users, not healthcare organisations, at the centre of care”.
What information goes into patient-centred cancer care?
One of the best ways to create patient-centred care is by surveying patients about their cancer journey and treatments. This may include asking patients questions about how supported they felt, any emotions and symptoms they experienced, their inclusion in care decision-making, and the quality of communications with healthcare professionals.
The NSW Cancer Institute uses the following methods:
- PREMS or Patient-Reported Experience Measures. This data is used to track aspects of care including involvement and communication, to understand how patients felt about their care, to inform of new support initiatives, and to support cancer care services.
- PROMS, or Patient-Reported Outcome Measures. This measures how patients’ overall wellbeing was affected by their cancer and the treatments they received.
However, patient surveys are just the first step. The feedback needs to be used to make real-life improvements in care. Data from surveys for example can be used to feed into research & development, determining what matters to patients and whether a treatment pathway provides good value.
What does patient-centred cancer care look like?
A patient experiencing patient-centred cancer care will be treated with respect and dignity, given the opportunity to be involved in their own healthcare decisions, provided with tailored care, and generally helped to get better long term.
Patient-centred care needs to not only avoid putting the healthcare organisation at the centre of patient healthcare plans, but also the illness itself. In other words, it is the person that needs the treatment and care for their cancer and not the other way around.
To provide patient-centred care, the NSW Cancer Institute says it’s crucial for health professionals to engage with patients and their caregivers (since they know what they need), and to make information available to patients in a timely way. It’s important that the cancer healthcare system is flexible, in that it is always learning, reflecting and adapting.
Dr. Basch says doctors also need to make it easier for patients to communicate with them, as it is not always easy for patients to do so.
Translating patient-centred care to real-life cases
Despite all the good intentions, however, cancer patients can sometimes find there is a disparity between the idea of patient-centred care and the reality of their experience.
While acknowledging they might have been given excellent clinical treatments, patients sometimes report about how they were spoken about in the abstract – almost as if they were not there. They felt referred to in terms of their cancer, rather than in terms of their life and status as an individual person.
It certainly sounds like there is plenty of room for improvement when it comes to the delivery of patient-centred cancer care. But hopefully, as these practices become more integrated into cancer care, we should see better outcomes and quality of life for many cancer patients in Australia.