Before 2008, when the National Cancer Survivorship Initiative (NCSI) was launched, little or no thought had been given to the long-term health and wellbeing of individuals who had completed primary treatment for cancer. While much is known about incidence, survival rates and mortality for cancer, as these data have been routinely compiled using data collected by cancer registries since the 1970s, no figures about numbers of individuals living with cancer (prevalence) were available. Having been involved in the early calls for the NCSI, I found it shocking to think that for all the investment in cancer treatment and research, we knew so little. The NCSI has set about putting this right, though it is a slow process.
We now know the prevalence figures for cancer; further detailed analysis is allowing us to gain a picture of hospital and community service use by cancer survivors and studies are beginning to reveal a picture of the ongoing needs of individuals. It seems that while most people, following a period of recovery, do return to the life they led before cancer treatment, many are worried that cancer may come back. A minority of perhaps 20 or 30%
of individuals will also continue to be concerned about symptoms, consequences of treatment and other difficulties, eg employment after cancer.
The NCSI is developing and testing models of care designed to address these needs, and cancer services and primary care are being encouraged to take these up as part of future routine practice. At the heart of these approaches is the principle that individuals need to be supported to self-manage their condition while knowing how to seek help from professional services should they need it. Risk assessment approaches to identifying
individuals who may develop ongoing needs are being developed and tested and ideally all individuals should have an agreed plan of care following completion of primary treatment.
What has all this got to do with hospice and palliative care services you might ask? Well, there are many people with progressive cancer who are cancer survivors and experience high levels of symptoms and have unmet needs. They can be socially isolated from family and friends because of their disease and have quite deep emotional needs. Yet currently these people are not receiving any sort of palliative or supportive care because they
are ‘too well’ and many, such as women with metastatic breast cancer, may be receiving repeated cycles of chemotherapy or other anticancer treatments. These individuals look well, while being very unwell, and are often carrying on normal lives with jobs, families or other responsibilities. They frequently do not qualify for hospice or palliative care because they are not close to the end of life, though this is difficult to determine. In any case, they
would not necessarily accept palliative care because of its connotations and prefer their relationship with an oncologist to any other health professional or service.
These cancer survivors challenge us to think differently about the role of hospice and palliative care services if they exclude individuals who clearly have many needs that might be met by such services. This leads me to ask a few challenging questions:
- How should hospice services respond to the changing picture of cancer survivorship?
- What role should hospices play in supporting people earlier in the disease trajectory?
- Cancer is becoming a ‘chronic’ illness – how should hospices adjust to this?
- What does it mean to support long-term living with cancer?
- What does ‘healthy’ dying look like in this new era?
- What is tomorrow’s business for hospices?
I do not have any easy answers to these questions, but I do challenge us all to consider how
we might find a way to answering them.
This article was originally published in volume 9, issue 1 of the Hospice Information Bulletin.
You can contact Professor Corner at J.L.Corner@soton.ac.uk
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