"We Have a Duty to be Kind and to Comfort, Whatever Form it Takes"

I was touched by the thoughtful comment left by Dr. Money-Kyrle below on a recent blog post of Professor Edzard Ernst with the title: The Use of CAM in palliative Care is Highly Problematic. Note: I have reproduced it in its entirety in an easier to read format.

You can read the original post and comment section by clicking HERE

Dr Julian Money-Kyrle on Thursday 23 August 2018 at 02:22

"I have limited experience of other terminal diseases, but when someone receives a cancer diagnosis, one of the most distressing things is the uncertainty of what will happen and when, and another is the feeling of being out of control. The patient has lost control of their body, of all the plans for their life, of how they can cope for themselves, and indeed how they can organise any sort of normal life around out-patient appointments, biopsies, operations, staging scans, treatment sessions, radiotherapy, chemotherapy… Then there are the symptoms from the cancer itself: pain, loss of appetite, changes in appearance and body image, fatigue, and symtoms from their treatment: post-operative pain, pain from multiple venepunctures, nausea, vomiting, mouth ulcers, diarrhoea, rashes, fatigue…

In the UK at least, although the NHS does provide good cancer treatment, oncology departments are under a lot of pressure simply to see the patients and ensure that their treatment is delivered correctly and safely, and that doesn’t leave as much time as everybody would wish to give the patient the time and individual attention that they really need, or to help them to understand what is going on and to enable them to feel in control of their lives again.

The palliative care services do a very good job here, advising on symptom control but many other things, too, such as how to claim benefits and indeed practical advice on how to manage their lives given the constraints of their disease and treatment. One thing that they are much better placed to do is to provide attention and to help the patient feel better about themselves.

This can include massage of all kinds, reflexology, aromatherapy, music therapy, art therapy. I think there are few who would disagree that these can be pleasant and relaxing.

Perhaps you could call this a placebo effect, but when we are dealing with distressed people approaching the end of their lives, harnessing the placebo effect to make them feel better is very valuable. The effect is stronger if it is something that they may have a prior belief in (for whatever reason), and that might include something like acupuncture, where we know that the ritual and the needles and the arcane and complicated system behind it ensure that the placebo effect is very strong indeed.

These are not people who are likely to have an evidence-based epiphany at the end of their lives. They are ordinary people who have probably never had any education and training in scientific thinking or evaluating evidence. They will believe what their friends tell, them or other people that they identify with (such as other patients), not what they are told by experts. Do you really think it is kind, or indeed ethical, to try to educate them in the workings of evidence-based medicine at this point in their lives? Do you even think that it is possible?

If we deny them this comfort, the services in the NHS don’t have anything to put in their place. At least if we work with a few known SCAM practitioners with close relationships to the palliative care (or oncology) services, then we will know that they won’t be told to stop their proper treatment, to go onto mad diets, or to sell the house to pay for dendritic cell therapy in Germany or blue scorpion venom in Cuba.

Indeed, if we take evidence-based practice to its logical conclusion, are we suggesting that our patients should abandon their religious faith, shun priests, immams and rabbis, avoid attending Church or whatever their preferred place of worship might be?

And while evidence-based medicine is something that we all aspire to, in practice we often simply don’t have the evidence to answer the question of how best to treat the patient in front of us, who would have been excluded from the trials by virtue of age, sex, co-morbidity or whatever, or indeed where the relevant trials have never been done. A real-world doctor has to make decisions all the time based on how he can extrapolate from the evidence to the current situation, using his own experience, consulting with colleagues and in discussion with a multi-disciplinary team, and within the constraints of funding, staffing and time.

It is interesting to see that the patients always prefer the doctor who is kind, who listens and who gives them time, who explains and who does his best to be honest. Arguably none of this matters if he gets the diagnosis wrong, or does not prescribe the right treatment. But of my surgical colleagues, the ones whose technical skills I rate most highly are not the ones I would let loose on my family.

I am certainly not advocating the many nonsensical cancer treatments that lie in wait for the unwary patient, which are often fraudulent and at the very least very misguided. I am not suggesting that we should turn back the clock on medical knowledge, believe the delusional systems of theosophic medicine, acupuncture etc. or abandon atomic theory. But when we reach the limits of what we are able to do for terminally ill patients with evidence-based medical care, we still have a duty to be kind and to comfort, whatever form that takes."

Dr Julian Money-Kyrle is a Consultant Radiation Oncologist specializing in uro-oncology. You can visit his web page HERE >