Chapter 3 – Medical and Palliative Care Ethics
3.5. Palliative Care Ethics
3.5.4. The Autonomy of the Patient – Shared Value, Different Practices
Aside from sharing the same basic respect and appreciation for the values of non-maleficence and beneficence for the patient – one other particular value of the shared value foundation between medical ethics and palliative care ethics has been emphasized very strongly in practice: the respect for the autonomy of the patient. Similar to medical ethics, palliative care ethics takes the
consent/choice of the patient as the most crucial and decicive controlling influence over the care trajectory. Even more so than medical ethics, in which context the consent of the patient is primarily concerned with the choice of treatment options, the patients consent to the care approach in
palliative care scenarios has more severe, far reaching consequences – since it involves intrinsic and extrinsic goals that rely on a much more intense and holistic, active involvement of the patient. Thus treatment of, and expectations towards, the patient as a stakeholder in the medical scenario at large changes drastically within palliative care ethics, while still being in alignment with the foundational values explicated in the Georgetown mantra.
In the palliative care scenario the patient and the care team of specialists is engaged in a mutual, equal-authority relationship141, and thus the pursuit of the extrinsic goals, by the phronesis-equipped professional that has a privileged access to the patient. This, to some extent extreme, focus on the patient and the revision of doctor-patient relationship makes the task on the professionals side much more challenging than “only” to consider employment of therapeutic measures within the medical ethics of the established setting. Aside from the postulated increase in beneficial effects for the patient as a whole person the intimacy of the situation also entails, that unwanted incursions of the expert into the emotional, psychological and social domains of the patient holds the potential for even greater damaging effects for the quality of life of the patient.
137 Again, this is one of the main goals and accomplishments of St. Christopher's as an institution. 138 Hyperbolic terms for clarity, a well-meant RAA if you will.
139 Randall & Downie (1995) pg. 17 140 ibid. pg. 23
141 Of course always contingent upon the precondition of having a conscious, sound-minded patient at hand as well as good information available and distributed between the stakeholders.
Informed consent, or dissent for that matter, regarding psychological or emotional problems however tends to not enjoy the same respect, and commands not the same authority as physical intervention consent and usually means the application of a more detailed informed consent process in which the patient is often on the defensive, and more paternalistic attitudes are still prevalent in the professionals and their actions142. The “well-meaning presupposition”143 of helping the patient - especially in palliative care in which the professionals often carry a strong sense to help at all costs, has to be closely scrutinized when the professional gets involved in the pursuit of extrinsic goals. As well-meaning the initial conception of Saunders was for the hospice as an equal, mediating place between patients, doctors, nurses, relatives and visiting students; the whole person care presumes the patients active and willing inclusion, “[whole person care]....implies a willingness to assist the patient to overcome psychological, social and spiritual barriers to well-being, by using our
relationship with them as fellow members of a community”144.
The patients relatives though possess also a privileged relationship and access to the patient, ideally they come with a long history of healthy emotional attachment and a loving, supportive disposition. Though more often than not the inclusion of relatives within an already economically constricted care trajectory brings in just more problems, especially when it comes to dying, questions of inheritance, emotional distress, unvoiced regrets etc.. The role of the professional is to keep his or her distance to these secondary and tertiary conflicts, and mediate on the patients behalf, if no consent is given, relatives are not to be involved at all, making the care trajectory much easier. It stands also to argue that despite schooling and complexity induced fragmentation of disciplines we should question whether it is a good idea to medicalize a basic, inherent human experience – Death145 when it comes to the patients relatives, or if the engagement should be a reduced, hands off approach leaving the autonomy of the relatives in conjunction with the patient intact and not
interfere with human grief and coping mechanisms.
Between medical ethics and palliative care ethics we find a shift in the two primary stakeholder conceptions - the doctor and the patient – caused by the inclusion and pursuit of extrinsic goals, in addition to the already present intrinsic goals, within palliative care. The medical professional is exposed to higher, more personal demands in dealing with the patient; motivated by whole person care he or she has to be a capable caregiver schooled in techne and a capable person posessing phronesis. All the while facing the patient not from a standpoint of authority but on equal terms in a team setting. The patient has increased rights as an autonomous person, which entails that the active shaping of the palliative care trajectory falls within the patients responsibility. Instead of passively choosing between treatment options as in medical ethics, the patients being is called into action, participating in shaping his or her end of life with even more self-responsibility in a distress situation – requiring more strength and attention from the patient than before.
142 See psychologists struggle: P. S. Appelbaum & T. Grisso: “The MacArthur Treatment Competence Study I: Mental Illness and Competence to Consent to Treatment” in M Bull Kovera: “Law and Human Behavior” Vol. 19 No. 2
Washington D. C., American Psychological Association (1995) pg. 105ff, as well as: W.T. Carpenter et. al.:
“Decisional Capacity for Informed Consent in Schizophrenia Research” in J. T. Coyle(ed.): “Archives of General Psychiatry” Vol. 57 No. 6 Chicago, American Medical Association (2000) pg. 533ff, also: C. W. van Staden, C. Krüger: “Incapacity to give informed consent owing to mental disorder” in F. Godlee (ed.): “Journal of Medical Ethics” Vol. 29 No. 1 London, BMJ (2003) pg. 41ff
143 Randall & Downie pg. 20 144 ibid.
145 If the changing DSM standards are any indication, defining normal from abnormal psychiatric states appears to be a fucking mess. see for example: S. Vanheule: "Diagnosis and DSM: A Critical Review" Basingstoke, Palgrave Macmillan (2014)
Summarily, in medical ethics the patient has the autonomy of choice, whereas in palliative care ethics the patient has the autonomy of a whole person to deal with. Adding care ethics to the mix we find that aside from the implementations of the shared values we should also investigate the
presuppositions and the paradigms of the ethics, as to how are the actions motivated in a
fundamental fashion and if there is need to explicate these hidden values. Despite the difference in stakeholder conception and implementation of action directives, the basic moral values at stake between medical and palliative care ethics are shared. The emphasis does shift, but when it comes to the moral values these two ethical conceptions are not that far apart as it might seem due to the drive of palliative care ethics to establish its take as a serious contender, and other separating effects on the level of professional fields. To put it into one sentence; medical and palliative care ethics are two different ethical conceptions rooted in the same moral values, and are not mutually exclusive in a fundamental fashion as say deontology is to hedonism.