At a recent CTOS conference one of the elder statesmen of medical oncology, Dr Bob Benjamin (MD Anderson), came out with a very perceptive comment. Summarising a number of presentations, he suggested that European oncologists treated patients with advanced disease with palliative intent.
“My intent is always curative,” he said, “its just that I am not very successful.”
His use of the word ‘success’ highlights an issue. Is success only about cure? I believe it is important to see success in treating a patient, and cure, as distinct and separate.
An underlying agenda is our reluctance to discuss death and dying. I have lived with advanced cancer for 15 years. The measures taken to control each recurrence have been radical and have been undertaken with curative intent. That has not stopped my mind working hard on the issue of dying, and how I would handle a diagnosis of irrevocably terminal disease. That’s a lot of quite hard thinking. You could argue that my long survival means that I am not representative of the ‘average’ patient. I would merely say that you get what you can from each patient’s experience and I hope that my view has the potential to open up new awareness of what clinical ‘success’ might mean.
I believe the position is simple. Every cancer patient wishes to live a long life but they also want to have a high quality of life, free of pain and other symptoms, and also free from any life-style limiting side-effects of treatment.
As far as the patient is concerned treatment for cancer is not just about the outcome, it’s about the journey. Looking at cancer treatment pathways it is clear that the key to the best outcome is two-fold:
- Early and accurate diagnosis
- Followed by primary interventions delivered by specialists
If we then look at outcomes we find that about 50% of patients survive 5 years. The majority of these are cured, if we define cure as the fact that they eventually die of something else.
Most cancer treatment is about extending life. Even for those who will in time be cured it starts with follow-up but for about half of us it evolves into a battle to deliver a cure. Treatment is given with curative intent and patients maintain that belief even when the truth is that it is palliative and the longer it goes on the more obvious that is. Looked at this way oncology faces a challenge. It can be accused of over-medicalising dying, with patients seemingly willing but usually ignorant collaborators.
We have to move on. Palliative care has been rapidly developing and we have to find ways to integrate that knowledge clinically and implement it with patients who are on a pathway to end-of-life, even if that term will only apply years in the future.
But the social and scientific world in which we are working is broken. The patient community is encouraged to believe it has a right to the latest treatment, somehow, and of course the pharmaceutical industry is not going to discourage that.
Current research practice focuses on Clinical Trials whose barely concealed objective is to create demand for drugs at the end of life. They deliver marginal benefit to patients, often with substantial side-effects and at a high cost. In the confusing but important politics of pricing interventions like the Cancer Drugs Fund actually encourage higher pricing from pharmaceutical companies. The CDF was due to disappear when value-based pricing was introduced in 2014. But that dream has vaporised. What a shambles.
What we need to do is to pivot this debate on the patient. The debate must be about each individual, decisions for the individual made by the individual. In cancer the tipping point is the one where the oncologist knows that the disease is unlikely to be beaten. This is the point by which a proper program of supportive and palliative care must already be in place. Patients have a right to a rounded understanding of quality of life so they can take a personalised approach to the treatments which will be offered and make decisions which are right for them.
Four years ago a study in lung cancer was published by Dr Jennifer Temel. A group of patients was randomised to receive either early palliative care with standard oncology care, or standard oncology care alone. The outcome was that not only did the patients receiving the palliative programme have a higher quality of life but they used fewer drugs and lived longer too. Currently the study is being replicated. It is of course not surprising to discover that no pharma company has tried to replicate this study and compare the value of its new drugs with a properly constructed palliative care programme but that is what we need.
Our ambition should be to reach the point where each patient can make considered decisions of their own about treatment, supported by good information, and expert advice which does not, for whatever reasons, seek to talk-up the latest high-technology route in such a way that it is automatically preferred. I would expect many oncologists to say that this is what they try to do already and to be fair, many try hard and they do their best. A few are changing their hospital’s structures and systems, but it is a few. However I believe that a lack of independent clinical specialists focussed on the whole picture of patient benefit, is work against this happening effectively.
We do not study ‘living with cancer’ anywhere near enough and we need to. Our doctors need tools that look at ‘staying alive’ in a rounded manner. Such tools would be based on behavioural, social, and psychological markers identified through observation, questioning and self-reporting.
A philosophical friend of mine uses a simple equation: Objective + Subjective = Oneness
For him it is a description of a spiritual search. In cancer the objective view is disease-centred while the subjective is patient-centred. We should not, however, lose sight of the spiritual context. The emptiness of a biological diagnosis without a holistic assessment of the patient is something which Dr Nathan Cherny illustrates in a recent paper in JNCI (I leave you with the reference).
Small studies are appearing which support this ‘oneness’ approach. An article published earlier this year in CA: A Cancer Journal for Clinicians looked at the palliative care experience at MD Anderson. It concluded that the earlier palliative care was introduced to patients the more they benefited. There was benefit for the hospital too: fewer emergency visits, fewer hospital admissions and fewer deaths in hospital. With patients preferring to die at home or in hospice, an ambition which the NHS is not good at meeting, there must be a lesson here. At the recent NCRI Conference we were also given examples from Italy and Finland where they are making this concept work. Its not rocket science.
A key component in this approach is communication with the patient’s close family, whether that communication is direct with the cancer doctor, a specialist nurse, or some other intermediary. At the moment family communication often only happens through the patient themselves. There is good anecdotal evidence that well-informed patients can make inappropriate decisions about treatment when pressured by a less well-informed family. The truth is that we do not do communication well. It is unfair to look at it as a clinical problem best resolved by training oncologists or nurses better than we currently do. We need intermediaries acting to support the principles of ‘oneness’.
An outstanding contributor to the growing library of material has been the Harvard Professor of Surgery Atul Gawande, this year’s BBC Radio 4 Reith Lecturer. The lectures are available as podcasts. His book ‘Being Mortal’ was also recently published and is a powerful voice for change. What he describes will probably sound similar in principle to the ‘personalised medicine’ approach driven out of biology, genetic knowledge and chemical innovation. As far as patients are concerned individualised care would be a more meaningful use of the term ‘personalised medicine’ than better chemistry. Gawande proposes systematIc approaches, supported by simple ideas like checklists. People have priorities other than longevity for the end of life, he says, yet they are rarely asked about them and the actions needed can be so simple.
N Engl J Med 2010; 363:733-742 Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer. Jennifer S. Temel, M.D., Joseph A. Greer, Ph.D., Alona Muzikansky, M.A., Emily R. Gallagher, R.N., Sonal Admane, M.B., B.S., M.P.H., Vicki A. Jackson, M.D., M.P.H., Constance M. Dahlin, A.P.N., Craig D. Blinderman, M.D., Juliet Jacobsen, M.D., William F. Pirl, M.D., M.P.H., J. Andrew Billings, M.D., and Thomas J. Lynch, M.D.
JNCI DOI:10.1093/jnci/dju321 Words Matter: Distinguishing “Personalized Medicine” and “Biologically Personalized Therapeutics”. Nathan I. Cherny, Elisabeth G. E. de Vries, Linda Emanuel, Lesley Fallowfield, Prudence A. Francis, Alberto Gabizon, Martine J. Piccart, David Sidransky, Lior Soussan-Gutman, Chariklia Tziraki
CA: A Cancer Journal for Clinicians, 64: 223–224. 2014. Early outpatient referral to palliative care services improves end-of-life care. Barton, M. K.
This is an abbreviated and slightly updated version of a talk given at the National Cancer Research Institute Conference in November 2014.