Don’t chase dreams, chase reality
This generation, this society, this era, our ethical compass is hard to see clearly because we live in this culture, but I suspect we are in the age of choice. We weigh choice (autonomy) a wee bit higher than the other principles of medical ethics. We innately accept this trump card without really seeing it.
Needless-to-say it wasn’t always so, in the past non-maleficence held a higher waiting (such as in the Hippocratic oath), or I believe beneficence had a higher weighting in the 60s, 70s, 80s with multiple new treatments coming through, although over time there was a greater and greater emphasis on ‘respect for autonomy’. I find it very insightful autonomy is prefixed with ‘respect for’, which often lays absent and forgotten.
This movement overall has been a good thing, informed consent for an operation and involving the patient in decision making has been shown to increase compliance and outcomes. (1) However there has also been issues with this shift, to cite examples; the vaccination of children, in which uptake has dropped to levels in which herd immunity is being effected and the resurgence of forgotten diseases occurs (2,3), or the level to which informed consent should extend without the patient becoming a qualified surgeon (4). It has likely been a factor (one of many) in the growth of unreasonable expectations, increasing demands (5) and the break down in doctor-patient relationships.
From a cultural perspective, choice means choice, freedom from constraint, as long as one’s behaviour does not hurt others it is ok. It is the liberalisation of society.
It however tends not to recognise the extent to which most actions, even the most apparently private ones, have an impact on others, and the more apparently private an activity is, the more liberal individual autonomy insists that it not be regulated.
By-the-way, there is problems with weight unproportionally placed upon any of the ethical principles. For example; who defines beneficence? Can we not be paralysed into inaction because of non-maleficence? Shouldn’t it be justice that NICE gives everyone proton beam radiotherapy?
There are other models of ethics, such as narrative bioethics, but none seem to capture the soul of medicine today as most understand it, which has grown out of a rich history from the Greeks through various centuries of religious influences and more recently to the declaration of Helsinki and Nuremberg code and Beauchamp/Childress’s textbook, Principles of biomedical ethics.
We are in the age of autonomy. In medicine as a whole paternalism is frowned upon and we have often lost all incentive for soft paternalism.
Why is this important?
It is important not as a vague theoretical topic, but as a real applied principle in medicine as a whole but acutely in palliative care.
Putting aside assisted suicide/dying/euthanasia. We potentially restrict and make paternalistic decisions constantly in palliative care as the patient changes and deteriorates.
This is going against the grain, making paternalistic decisions when the patient is unable to. We often weigh beneficence (e.g. medication changes) and non-maleficence (e.g. not for hospital admission) above clear direct consent for whatever we are doing. Sure, they have consented to come into hospice / our involvement, but they do not (and no-one does) have the intricate understanding of what the future holds and challenges awaited, thus what may be done in all instances.
We of course try to be in-keeping with what we understand is the patient’s wishes or prior wishes. We take into account their character, preferences, advanced statements etc. We speak to family, NOK and colleagues. If there is a POA (medical), their view is considered the patients view.
This is a huge responsibility, in this age of autonomy, we often weigh other principles above the accepted norm, namely because we cannot know. Although seldom said, we truly ‘respect for’ autonomy.
I guess noticing this dichotomy in societal expectation of absolute autonomy and our role practicably managing it, is something to both understand for communication purposes, but also semi-predict that they will come into conflict at times.
I would suggest Charlie Gard was the high-profile end of this conflict. I suspect (as alot do) this scenario and similar is going to become increasingly more frequent as this dichotomy becomes more and more pronounced.
My question, without an answer, is how do we approach and manage this?
This is just a wee observation, and to any ethicist out there this thought process is probably unpalatably simplistic, and I would appreciate any corrections / additions / comments etc. These views are my own and do not represent WMCARES
- Jin, J., Sklar, G. E., Min Sen Oh, V., & Chuen Li, S. (2008). Factors affecting therapeutic compliance: A review from the patient’s perspective. Therapeutics and Clinical Risk Management, 4(1), 269–286.
- Phadke VK, Bednarczyk RA, Salmon DA, et al. Association between vaccine refusal and vaccine-preventable diseases in the United States: a review of measles and pertussis. JAMA 2016 Mar 15;315(11):1149-58 http://www.cidrap.umn.edu/news-perspective/2016/03/study-relates-vaccine-refusal-rise-measles-pertussis
- Porteous GH, Hanson NA, Sueda LA, Hoaglan CD, Dahl AB, Ohlson BB, Schmidt BE, Wang CC, Fagley RE. Resurgence of Vaccine-Preventable Diseases in the United States: Anesthetic and Critical Care Implications. Anesth Analg. 2016 May;122(5):1450-73. doi: 10.1213/ANE.0000000000001196. Review. PubMed PMID: 27088999.
- Consent: Patients and Doctors making decisions together (2008) http://www.gmcuk.org/GMC_Consent_0513_Revised.pdf_52115235.pdf
- The Kings Fund Think Tank 2016 https://www.kingsfund.org.uk/press/press-releases/demand-nhs-services-soars-record-levels
- Just really interesting – http://www.bbc.co.uk/programmes/b091wf88