7: Treatment regimes and options: perspective
It is important to be aware that within this group we have something of an automatically self-selecting group of survivors. We do not, alas, have the majority of diagnosed brain tumour owners with us. For many, treatments do not work.
It is also important that we recognise that for everyone in every health situation, where health improves, there is a sure dependence of well being on belief in the efficacy of the treatment. On the one hand we have people here with comparable survival circumstances but on different treatment regimes; on the other it seems entirely undesirable either to question an individual's faith in treatment or appropriate to assert to another that a particular line of treatment is fundamental ... except in the narrow range of treatments which have been subjected to clinical trials.
It is, again, important to recognise that it is the right of every patient to say no to treatments. Doctors seem to have slipped into referring to patients who decide against treatments as 'nihilist'. However, acquaintance with the commonly and formally accepted meaning of nihilism...
Nihilism (from the Latin nihil, nothing) is a philosophical position that argues that existence is without objective meaning, purpose, or intrinsic value. Nihilists generally assert that objective morality does not exist, and that no action is logically preferable to any other in regard to the moral value of one action over another. [Wikipedia]
...makes clear that it is in fact entirely inappropriate or a very narrow moral judgment to assert that a person wishing to adopt a lesser path of treatment is nihilist. On the contrary such a decision may well reflect a high individual sense of morality and of the intrinsic value of life, days, and rights to make decisions as an individual, deciding for peacefulness and quality rather than tech interventions.
So it becomes important for family, friends, carers, health professionals all to be alert to and respect the thoughts of the person with the diagnosis. This becomes difficult where cognitive capacities are reduced and because of that it is important to consider making decisions on values and courses of action while a person is able to make clear and cogent decisions and communicate them clearly. Clear thinking and clear communication are at risk. It also makes it a very difficult situation for parents or others needing to make decisions for and or with children. One of our members has commented on this situation as follows: Include here an exhortation for patients and carers to talk through potential scenarios while the patient is cognitively aware and able to communicate so that the carer is not left in a quandary as to what the patient might want, if it comes to a point where the patient is no longer aware, or able to communicate, their wishes? This is where I ended up – I don’t know whether knowing that would have necessarily helped, but it’s too late now. Also include a cross reference to the material on powers of attorney and guardianship (click to go to that page).
There is also the problem that when anyone has any family member with a cancer diagnosis, antennae become more sensitive to news of cancer treatments and friends rush in where nurses might not, to tell you do this or do that. A whole pattern of thoughtful reserve, respect for the individual, and sensible ways of conveying information becomes important... and will no doubt flow from how well or otherwise we do these things without the impetus of a brain tumour diagnosis.