By Suzanne Wait
Last week, I had the opportunity to speak on a panel on palliative care at the Economist Intelligence Unit (EIU)’s War on Cancer event on 21 November 2017. The session was moderated by Dr Vivek Muthu, Chair of EIU Healthcare and All.Can member. I was honoured to share the panel with Dr Ricardo Baptista Leite, a physician, researcher and MP from Portugal.
I am not an expert on palliative care. But from all the work we have done with patients on All.Can and other projects at The Health Policy Partnership, what has struck me time and time again is that a patient’s ability to cope with the physical, psychological and emotional effects of their illness is often not considered in their treatment. The discussion last week on palliative care reconfirmed this – powerfully.
What is palliative care?
There are an incredible number of misconceptions around the term palliative care. For many people – patients, but also physicians – it is the care that is offered when all ‘real’ (i.e. curative) treatment options have been exhausted. In reality, the definition of palliative care is treatment and care that is focused on improving the quality of life of patients suffering from a serious illness. The American Cancer Society and others have advocated that palliative care be fully integrated into cancer care and offered to ensure patients receive relief from the effects of their treatment from the onset of their care, not just at the end. A series of randomised controlled trials dating back to 2010 showed that the early introduction of palliative care for advanced lung cancer patients not only improved their quality of life, it reduced their need for intensive care and improved their survival by 3 months1 2 – which is considerable given that up to 80% of lung cancer patients do not survive more than one year.
Studies have shown that patients are far more likely to seek palliative care services if their oncologist recommends it and makes the referral to palliative care services. So, why isn’t palliative care more readily offered at the early stages of a patient’s treatment? One of the main challenges appears to be stigma. Palliative care is too often associated with failure, death and lack of hope. Doctors are hesitant to raise it, and patients don’t want to hear it. This can have devastating consequences. A study across several European countries found that in 1 out of 3 cases, patients with advanced cancer did not receive pain control appropriate for their level of pain3 – a shocking and sobering statistic. Huge numbers of patients spending their days in needless pain, all because of an aversion to broach a subject.
Quality cancer care
In a position paper by the European CanCer Organisation (ECCO) on access to innovation (to which I contributed), one of the main areas of innovation that was shown to be inadequately adopted in many cancer centres was a systematic psychosocial assessment for every cancer patient. In preparing for the War on Cancer session, I was looking at the International Psycho-Oncology Society (IPOS) publications, and was struck by a standard for quality cancer care, which they first issued in 2010. The standard has three simple components:4
- Psychosocial cancer care should be recognised as a universal human right
- Quality cancer care must integrate the psychosocial domain into routine care
- Distress should be measured as the sixth vital sign after temperature, blood pressure, pulse, respiratory rate and pain.
Despite this, the issue that patients raise time and time again is that they feel abandoned after their ‘active’ phase of treatment and care – left without support to improve or maintain their quality of life, deal with longer-term effects of their treatment, or cope with all the psychological aspects of living with cancer. Clearly, there is something wrong. There is an urgent need for greater follow-up care for patients after the ‘active’ phase of treatment. Palliative care can play a key role here, taken as it was intended – care focused on improving patients’ quality of life.
A shifting approach to palliative care
One of the questions asked during the EIU session was whether palliative care needed rebranding. Indeed, palliative care has been named ‘supportive care’ in many health systems to reduce the toxicity of its association. But this is not just a name change – what is needed is a philosophical shift to embrace palliative care as an integral and essential component of quality cancer care. This reframing could create huge benefits for patients. Less stress, less pain, more support, increased quality of life and, as studies have shown, potentially longer survival.
Another issue palliative care faces is that, with the excitement created by advances like immunotherapy, genetics, and artificial intelligence, there is a risk that we forget to focus on addressing the basic tenets of cancer care – including palliative and end-of-life care. The entire discourse around ‘fighting’ cancer, as if an epic battle or quest, that frames death as a tragic failure, is problematic. A relentless focus on survivorship may leave little room for the emotional, psychological, and often practical realities of life with (or after) cancer, which are so important for patients and their families. These may be less ‘sexy’ as areas to fight for or look for the need for change, but they require our constant attention if we really are going to improve the quality of life and outcomes of cancer patients.
Survivorship is, of course, the outcome we all want, and innovation in cancer care is enormously exciting and worth striving for. However, introducing palliative care early and appropriately in the cancer pathway should be seen as an important innovation in its own right. And most importantly, we should never lose focus on the need to do everything possible to improve and protect patients’ quality of life, whatever the prognosis.
Suzanne Wait is the managing director of the Health Policy Partnership, which is the secretariat for All.Can International.
1. Scibetta C, Kerr K, McGuire J, et al. The costs of waiting: implication of the timing of palliative care consultation among a cohort of decedents at a comprehensive cancer centre. J Palliat Med 2016; 19(1): 69-75.
2. Smith S, Brick A, O’Hara S, et al. Evidence on the cost and cost-effectiveness of palliative care: a literature review. Palliative Medicine 2014; 28(2): 130-50. 4.
3. Cancer world. 2017. Pain! The Denial needs to end. Available from: http://cancerworld.net/cover-story/pain-the-denial-needs-to-end/
4. https://ipos-society.org/about-ipos/ipos-standard-of-quality-cancer-care/