By Dr Kerry Allen (Lecturer, HSMC)
Statistics about older people and cancer make compelling reading. In 2015 around 360,000 people were diagnosed with cancer in the UK and 36% of these people were 75 or over. In the next 20 years this proportion is set to rise to almost half – 46% of all cancers will be diagnosed in people aged 75 and over.
HSMC’s research report ‘Advancing care, advancing years: improving cancer treatment and care for an ageing population’ was launched by Cancer Research UK last week. The study set out to understand how this rise in cancer for the oldest people in UK society is significant for cancer services. We explored how treatment decisions and experiences of care should be improved. The research underpins CRUK’s approach to treating and caring for older people and informs a policy briefing, launched alongside the report.
On the face of it, taking ‘older people’ or ‘people aged 75 and over’ as a research focus seems objective enough. But do these individuals really share enough distinct features to warrant being grouped into a category and targeted as a research focus? Perhaps our first challenge was to acknowledge the diversity within that group: physical, cognitive and social. A second challenge was to recognise that characteristics associated with old age are a moving target, as our oldest generations retain strength and health in ways their predecessors didn’t. These challenges, looking beyond the number of years, are shared by all involved in cancer services and are extremely significant for understanding cancer treatment possibilities.
What we could identify was a group of people with multiple health conditions, cognitive issues and complex social care needs. Not everyone over 75 displayed these characteristics and neither were those under 75 always free from co-morbidities, frailty or everyday care needs. The significance of age, as relevant to cancer services, is less about number of years and more a dynamic category, defined by specific issues and not easily captured within quantitative parameters. Above all, this group are worthy of research focus because they are the most likely to suffer negative impacts of pressures faced by NHS and social care. Pressures on time, workforce, transport and social support during rehabilitation.
Older people who had experience of cancer services collaborated with the research team, co-designing and adding their perspectives on findings as the study developed. They told us that effective patient/doctor communication was at the centre of a good care experience, confirming what we know about the value of shared decision-making. They spoke about a spectrum of decision making. At one end, grounded in the most negative experiences was ‘decision making as consent’, where health professionals sought consent from patients for a suggested treatment. At the most positive end was ‘decision making as consensus’ a lengthier process with more scope to learn about treatments and discuss potential outcomes before making their own informed decision.
In a survey for other older people with cancer, designed by this advisory group, 61% of older people with cancer reported involvement in treatment decisions. The availability of specialist nurses was a common feature of positive responses. A significant proportion though (35%) described not having the time or support to make an informed choice or to understand the consequences of treatment for their own lives. One of the most common reasons given for treatment choices was ‘trust in the doctors’. This could be interpreted in many ways, but suggests that these older patients may have felt strongly guided without fully recognising their ability to input when exploring treatment options and making decisions.
For a growing number of older people, cognitive impairment limits capacity to understand and choose treatment. This often calls for a protracted decision-making period where decisions needed to be ‘shared’ with wider family or support services, who may not always be in agreement with each other. Finding the time to work with this complexity did not always fit easily into closely monitored cancer service time frames and in the worst case scenarios ended with treatment decisions being reversed.
Whilst the quality of communication in consultations directly affected how older people felt about their care, the research also looked behind those consultations at the processes and information that had led to clinical treatment recommendations. These processes also have a direct impact on the quality of care, but are less visible to patients. The study found:
- Treatment decision-making does not always take all relevant factors into account. Detailed assessments of frailty and personal circumstances are not regularly undertaken. Feeding this information into multidisciplinary team meetings can clarify what treatments older patients can tolerate medically and accommodate socially.
- Information relevant to treatment could flow better between primary and secondary care teams. Opportunities to transfer information from primary care about patients’ preferences, circumstances, medical conditions, medications and frailty are missed. Good design of referral forms or digital solutions are promising interventions. This information may be especially important where patients are not aware of or able to articulate relevant information.
- Specialist nurses and geriatrician input are valued by other health professionals and older people. Cancer specialist nurses help people to understand their diagnosis, choices and treatment plans. They can also provide a valued bridging role between primary and secondary care teams.
- We must ensure treatment innovation reaches older people. Members of multi-disciplinary cancer teams felt that a lack of clinical evidence about the efficacy of treatment in older people was a barrier to treatment. Recommending treatments without clear evidence from clinical trials to demonstrate clinical effectiveness and positive impact on quality of life is understandably viewed as a risk.
Overall the study confirmed that cancer care should adapt to accommodate the complexity of cancer cases in our ageing population. Cancer services that serve older people best may be those that prioritise improvements by: generating better data about treatment outcomes in older people with multiple conditions; considering additional information (especially around frailty) in clinical treatment recommendations; and providing the space and skills to share complicated decisions with patients and their families.
The full report is available from the Cancer Research UK website.