Palliative care should not be a last resort

Palliative care exists to reduce suffering and improve patients’ quality of life. So why is it often unconsidered until other options have been exhausted?

Palliative care is care focused on improving quality of life for patients with a serious illness, regardless of the stage of that illness.

Last month, I had the opportunity to speak on a panel on palliative care at the Economist’s War on Cancer event in London. The discussion powerfully reconfirmed something that has struck me time and again in the work we’ve done with patients on All.Can and other HPP projects: that a patient’s ability to cope with the physical, psychological and emotional effects of their illness is often not considered in their treatment.

What is palliative care?

Many people consider palliative care to be the care offered when ‘real’ – i.e. curative – treatment options have been exhausted. But what it really means is care focused on improving quality of life for patients with a serious illness, regardless of the stage of that illness.

The American Cancer Society is among the organisations advocating that palliative care be fully integrated into cancer care, to ensure patients receive relief from the effects of their treatment throughout the care journey, not just at the end. Studies have shown that the early introduction of palliative care for cancer patients can not only improve patients’ quality of life, but may also reduce their need for intensive care and prolong survival, while being cost-effective for healthcare systems.

There is evidence that patients are far more likely to seek palliative care services if their oncologist recommends it and makes a referral. So why isn’t palliative care more readily offered during the early stages of treatment?

Palliative care is too often associated with failure, death and lack of hope. Doctors are hesitant to raise the subject, and patients don’t want to hear about it. This can have devastating consequences. A study across several European countries found that in a third of cases, patients with advanced cancer did not receive pain control appropriate for their level of pain. It is shocking to think of patients enduring avoidable pain, simply because of an aversion to broaching a subject.

Doctors are hesitant to raise the subject of palliative care, and patients don’t want to hear about it. This can have devastating consequences.

Psychosocial elements of care

Earlier this year, I contributed to a position paper by the European CanCer Organisation (ECCO) on access to innovation. One of the areas of innovation we found to be inadequately adopted in many cancer centres was a systematic psychosocial assessment for every cancer patient.

Patients consistently report that they feel abandoned after their ‘active’ phase of treatment and care. They are left without support to improve or maintain their quality of life, deal with long-term effects of treatment, or cope with the psychological aspects of living with cancer. Clearly, there is something wrong. There is an urgent need for greater follow-up care after ‘active’ treatment. Palliative care can play a key role here, as it focuses on improving patients’ quality of life.

Rethinking palliative care

During the War on Cancer session, we considered whether palliative care needs rebranding. Many health systems now call it ‘supportive care’, to reduce negative associations. But this is not just about a name change. We need 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.

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 is problematic; the idea of an epic battle or quest inevitably frames death as a tragic failure. 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. This is an area in need of attention if we are really going to improve outcomes for cancer patients.

Survivorship is, of course, the outcome we all want. Innovation in cancer care is enormously exciting and, obviously, worth striving for. But the early and appropriate introduction of palliative care in the cancer pathway should be seen as an important innovation in its own right. We must never lose sight of the need to do everything possible to improve and protect patients’ quality of life, whatever the prognosis.

An extended version of this blog post was originally published on the All.Can website.

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The opinions expressed in this blog are those of the individual authors and do not represent the views of The Health Policy Partnership.