LOS NUTRIENTES
3. HIDRATOS DE CARBONO 1. Definición y funciones
the right of the other person to information hence that would undermine the person’s autonomy.174
In summary, voluntariness is regarded as an ethical requirement for a person’s decision to be autonomous. It protects the patient’s autonomy to make his/her own free decision.
Persuasion can be ethically accepted, but it should be limited to just assisting the patient to make his/her own decision. On the other hand, the patient’s autonomous decision must be free from coercion and manipulation, as that is ethically unacceptable and would undermine the respect for the patient’s autonomy.
After having discussed the elements of competence and voluntariness and shown their importance to a patient’s autonomous decision, the final requirement is of the greatest importance to this thesis: the requirement that the decision be based on adequate information for the patient to make his/her decision. Some aspects of the need for patients to have sufficient information to exercise choice have been mentioned already, but, in addition to concerns about manipulation of patients by withholding or misrepresenting information, the availability of information can be seen as significant in itself and therefore critical, even where there is no improper motive of the medical practitioner for not providing it. Thus, in the following the element of adequate information will be discussed.
2.8.3. Adequate information
There have been many ethical theories regarding the necessity for provision of appropriate medical information to the patient175 (such as the notion of trust, as will be discussed later on), but I would agree with McLean that the most important among them is the principle of respect for autonomy, which places an ethical duty on the doctor to provide the patient with medical information to assist him/her to make a decision based on his/her own values and priorities.176 It will be clear that enabling a patient to make a sufficiently autonomous decision requires information to be provided regarding his/her health condition and possible treatments for it and the implications of consenting to or refusing them.177
In fact, throughout the history of medicine, consideration of information disclosure has been gradually developed from the Hippocratic tradition that advocated leaving patients in ignorance about medical information and their health conditions. As mentioned earlier, the general thrust of that approach appears to dissuade physicians from being open with their
174 A MacLean Autonomy, Informed Consent and Medical Law a Relational Challenge p. 85-86.
175For example, S Pattinson Medical Law and Ethics p. 134-138.
176 S McLean A Patient’s Right to Know Information Disclosure, the Doctor and the Law (Dartmouth,1989) p. 6-8.
177S McLean Autonomy, Consent and the Law p. 42.
46
patients and may even lead them taking a decision on their patient’s behalf.178 It was argued that there has been a retreat from the dominance of paternalism as an accepted approach in medical practice in more recent times and an increased recognition of the importance of respect for patient autonomy in making decisions about their medical care.179 However, this is not an entirely new approach and I would argue that, in the Western medical ethics heritage, there has been some prominent consideration of the matter of information disclosure; for example, Benjamin Rush,180 a notable medical ethics philosopher writing in the 18th century, held that doctors should share medical information with their patients and deliver that information to the patients in a truthful way.181 John Gregory,182 another notable Scottish figure in medical ethics in the 18th century, also acknowledged the notion of doctors’
duties to educate patients and the public to learn medicine; to be honest with their patients;
to use and apply proper methods to tell their patients about their cases; and to use an appropriate manner to break the news to patients when their health was in a critical situation.183 This approach places emphasis on the patients’ need to be provided with information to make their decisions. It can clearly be argued that an autonomous decision relies on the prior sharing of relevant information, and accordingly in order to respect autonomy, that doctors should be under a duty to provide it. Accordingly, this view rejects the idea of paternalism being exercised by doctors as sole determiners of whether treatment is given and instead places greater priority on respect for patient autonomy.184 To respect patients’ autonomy is to allow them to be in charge of their decision-making (subject to caveats regarding the clinical appropriateness of treatment and resource constraints).185 In fact, it has been argued that in our modern society it becomes difficult to not rely on sufficient information that would be given to us by experts as we cannot properly make a decision without access to specialist knowledge.186 Therefore, it follows that doctors have a similar
178L Furst Between Doctors and Patients the Changing Balance of Power p. 1-18.
179 For example, E Sakellari ‘Patient’s Autonomy and Informed Consent‘(2003) 13 Icus Nurs Web J 1-9 and G Steevenson
‘Informed Consent’ (2006) 16(8) JPP 384-388.
180 For further information about Benjamin Rush see, C Burns ‘Setting the Stage: Moral Philosophy, Benjamin Rush and Medical Ethics in the United States before 1846’ in R Bake (eds.) The American Medical Ethics Revolution: How the AMA's Code of Ethics Has Transformed Physicians’ Relationships to Patients, Professionals, and Scarcity.(JHUP 1999) p.3-16. 181 R Faden and T Beauchamp A History and Theory of Informed Consent p. 66-65
182 For further information about John Gregory see, M Stratling ‘John Gregory (1724-1773) and his Lectures on the Duties and Qualifications of a Physician Establishing Modern Medical Ethics on the Base of the Moral Philosophy and the Theory of Science of the Empiric British Enlightenment’ (1997) 9(3) Med Secoli J 455-475.
183 J Gregory Lectures on the Duties and Qualifications of a Physician (M. Carey & Son 1817) p. 33-37.
184 S McLean Autonomy, Consent and the Law p. 42.
185 E Sakellari ‘Patient’s Autonomy and Informed Consent‘ p. 2.
186 A MacLean Autonomy, Informed Consent and Medical Law a Relational Challenge p. 43.
47
duty, so a failure to do so with intention or not would lead to ‘a false reliance that undermines the individual’s autonomy’.187
Hence, information is essential to patients’ decisions, but the question here is what kind of information should be provided to them? There is a continuing debate over the amount and type of information that should be given to patients and there is no clear answer, as it would not be easy to satisfy everyone about what should be disclosed. McLean, for example, has proposed that:
‘While it could be argued that only full and complete disclosure would allow for an autonomous decision to be made, in practice this would likely prove impossible and, some would argue, may even be counter-productive. It is increasingly recognised that demanding full disclosure of every piece of information within the healthcare professional’s knowledge would be unreasonable and even potentially unhelpful’.188
Waller also shares this concern, with which I agree, that to give an enormous amount of information to the patient which he cannot understand and absorb would not empower the patient to be in charge of his decision.189
Although information is fundamental to the patient’s autonomous decision there may be information that is not helpful or necessary for the patient to know, such as all the details of a medical procedure.190 This is because knowing the exact details of how a procedure will be performed is important for the person who will conduct it, but it is not necessarily needed for the person to whom it will be applied in order to agree to it.191 MacLean has given the following example to stress the point ‘it is completely unnecessary for patients to know that a purse-string suture is employed to close the defect left when an appendix is excised.’192 Indeed, such information may tend to confuse or mislead the patient and might negatively affect the patient’s decision, because the patient may pay more attention to the details of the procedure and less attention to the information that he really should consider in making his decision. Another type of information which may not be helpful to disclose to the patient ‘is details of the scientific evidence in support of the procedure.’193 The patient might need to know that there is research that has indicated that procedure A is better and more effective
187 ibid.
188S McLean Autonomy, Consent and the Law p. 44.
189 N Waller ‘The Psychological Structure of Patient Autonomy’ p. 262.
190 N Manson and O O’Neil Rethinking Informed Consent in Bioethics (1sted CUP 2007) p. 16.
191 A MacLean Autonomy, Informed Consent and Medical Law a Relational Challenge p. 135.
192 Ibid.
193Ibid.
48
than procedure B; on the other hand, the patient does not necessarily need to know or understand how the research demonstrated that.194
Another argument suggests that there would be difficulty if ‘full knowledge’195 was a prerequisite for considering the decision as autonomous, as it has been said that requiring full knowledge before a person could be deemed to be making an autonomous decision is
‘just a means of limiting action: sometimes an underhand means. No one has perfect knowledge, and a demand for it permits those with power to close in when a person is trying to make an unusual decision.’196
Hence, it seems that from an ethical point of view a standard of full disclosure of information concerning proposed options for the care of a patient might at first sight be an ideal position, since it would ensure that all information available was given to the patient. However, it seems to not be an achievable or even necessarily a desirable standard for the reasons given.
So, the question is; is there an approach under which it is easier to satisfy an individual patient’s relevant information needs than to require complete and full disclosure of all available information?
There have been different suggestions to find an alternative ethical standard for disclosing information, which may better satisfy the patient’s need for information, and in the following I will consider some standards that have been proposed.
O’Neill has agreed that full information disclosure is a problematic matter, and has asserted that this is not defendable or achievable.197 She has suggested that:
‘At best we may hope that consent given by patients in the maturity of their faculties, although not based on full information, will be based on reasonably honest and not radically or materially incomplete accounts of intended treatment, and that patients understand these accounts and their more central implications and consequences to a reasonable degree.’198
O’Neill then associated her suggestion of information disclosure to the idea of a patient-doctor participation and trust relationship as forming the basis for providing information.199 However, I would suggest this has difficulties, as it may be seen as implementing and
194 Ibid.
195 J Coggon ‘Varied and Principled Understandings of Autonomy in English Law: Justifiable Inconsistency or Blinkered Moralism?’ (2007) 15 Health Care Anal 235–255 p. 245.
196 Ibid.
197 O O'Neill Autonomy and Trust in Bioethics p. 44.
198Ibid.
199 Ibid.
49
supporting the paternalistic doctor relationship, which, as I argued above, would undermine respect for patient autonomy. This option, to rely on the notion of trust is a difficult standard to be adopted by law also since would also raise practical difficulties as to how the law could enforce it. I will revisit O’Neill’s argument and consider it further later in this Chapter when examining the concept of trust in more detail.
Another alternative to full disclosure has been suggested that, rather than setting out particular rules about disclosing certain amounts or types of information, proposes that the emphasis should be on what would help the individual patient make a sufficiently informed, and hence autonomous, decision:
‘...meeting a person’s individual needs for information and choice based on a deeper understanding of their autonomy means that rules and procedures of communication become less important than adoption of attitudes of respect, curiosity and concern to find out about the patient’s needs, capacities and preferences.’200
Therefore, the disclosure of information required is the information and knowledge that is likely to be relevant to a particular patient’s conditions and in relation to their own choices and decisions.201 This would involve a more active role for doctors in determining the information needs of patients rather than viewing themselves merely as passive providers of medical knowledge. Patients must be given relevant information about their health conditions and be actively encouraged to seek information, accepting the responsibility to
‘participate in the informed consent process’202 by conversing with the physicians, sharing information and asking questions in order to comprehend any unclear information.
What this approach also suggests is that to just provide patients with information with no understanding by them would arguably make their decision not a sufficiently autonomous one, as McLean has described such a decision as ‘impaired’.203 Waller has also argued that
‘[i]nformation is an important element of autonomous control; but unless the patient has confidence and competence to understand, it provokes stress rather than providing comfort.’204 Therefore, for a decision to be regarded as an autonomous, it should be grounded on understandable and clear information.205 For patients to be said to have understood information that relates to their health condition, it has been said that they should at least
200 C Delany ‘Respecting Patient Autonomy and Obtaining their Informed Consent: Ethical Theory – Massing in Action’ p.
201-202.
201S McLean and J Mason Legal and Ethical Aspects of Healthcare (1sted GMM 2003) p. 47.
202C Gauthier ‘The Virtue of Moral Responsibility in Healthcare Decision-Making’ p. 276.
203S McLean Autonomy, Consent and the Law p. 46.
204 N Waller ‘The Psychological Structure of Patient Autonomy’ p. 262.
205 R Faden and T Beauchamp A History and Theory of Informed Consent p. 248-249.
50
understand what health professionals would think necessary as a requirement to agree to or refuse the proposed medical treatment.206 However, more than that, it has been suggested that the information that is provided to the patient should be based on his/her views and values as well as conveying information on the consequences of the treatment, in order to help patient understanding.207
Beauchamp and Childress have recommended that information should be provided in simple language and using simple explanations that the patients can understand.208 This approach has a support in medical practice, and it has been said that a doctor should use clear statements to explain the risks involved in the medical treatment or procedure by using percentages or written information with clear examples in order to present the risks in an understandable way.209 Patients’ understanding can be enhanced, as above-mentioned, through involvement and communication between doctors and their patients, so that patients are actively engaged in discussion about treatment options rather than passive recipients of information.210
Nonetheless, it would be ethically ideal to place a duty on a doctor to ensure that the patient has understood the information given, but that is not possible in practice. It has been observed that there is an ‘epistemological aspect’ to ensuring that a patient has understood the information, which has been provided to him/her.211 The issue is that, if a patient has given consent and signed a consent form, that may be taken to indicate that the patient has in fact understood the information with no more assessment being made of his/her understanding.212 In other words, mere transmission of information and agreement does not necessarily mean that the patient has understood. In fact, it may be impossible to ensure that a patient has understood even given the best and clearest explanations.
Thus, in conclusion I would agree with the suggestion that what can be aimed at instead is to ensure that doctors make the effort to ensure so far as possible that patients have understood by communicating with their patients and engaging in a clear discussion and explanation. The aim is to leave the patient free to make a decision that reflects his/her values
206T Beauchamp and J Childress Principles of Biomedical Ethics p. 131-134.
207 J Kennedy ‘“Doc, Tell me What I Need to Know”—a Doctor’s Perspective’ (2003) 317 BMJ 862-863 p. 862.
208 T Beauchamp and J Childress Principles of Biomedical Ethics p. 131-134
209 S Graham and J Brookey ‘Do Patients Understand?’ (2008) 12(3) the Permanente Journal 67-69 p. 68.
210 R Kukla ‘How Do Patients Know?’ (2007) 37(5) The Hastings Center Report 27-35 p. 28-28.
211J Hutton and R Ashcroft ‘Some Popular Versions of Uninformed Consent’ (2000) 8 Health Care Analysis 41–52 p. 45.
212 Ibid.
51
and interests in the light of the adequate information that has been provided,213 as that can be applied and achieved by the law, as I will discuss in Chapter three.
Therefore, this thesis is not in favour of adopting the stance that to satisfy the ethical principle of respect for autonomy it is necessary for there to be full information disclosure, in the sense of disclosing all possible information about a patient’s condition and options for treatment, for the reasons that have been stated. Instead, it is concluded that sufficient information is necessary for competent adult patients to be self-determining and to respect their autonomy. The kind of information that might reasonably be expected to be included would cover diagnosis, prognosis, proposed treatments and their risks and benefits as well as the available alternative options for treatment. This information should be presented in a way that so far as possible enables the fullest understanding of the patient. Thus, I would suggest that a doctor will be under an ethical duty to supply the patient with sufficient information which is clear, can be understood and reflects the patient’s values, needs and desires. It can be said that giving such information to the patient shows respect for his autonomy, choices and wishes.214
The standard of information disclosure that should be set should follow from this and Chapter three will consider to what extent this standard has been met by UK law, in order to examine how has English law considered it in its development for consent law and the standard of information disclosure in the light of Western medical ethics. Specifically, the recognition of the principle of respect for patient autonomy.
While this is the approach that will be advocated in this thesis, a further important issue remains to be considered: whether the doctor may decide to withhold information and not discuss some issues concerning the patient’s condition or treatment. If the notion of respect for patients’ autonomy assumes that patients must be fully informed215 it can be argued that withholding information that is relevant to patients’ decision-making would appear to be contrary to the idea of respect for patient autonomy.216
However, as discussed previously, there is a distinction between providing all information available and providing information that is relevant and useful to patient choice. Based on
213S McLean Autonomy, Consent and the Law p. 50-51.
214 E Pellegrino and D Thomasma For the Patient’s Good: The Restoration of Beneficence in Healthcare p. 23-25.
215 For example, C Williamson ‘Withholding Policies from Patients Restricts their Autonomy’ (2005) 331 BMJ 1078-1080, D Sokol ‘Truth-Telling in the Doctor–Patient Relationship: A Case Analysis’ (2006) 1(3) Clinical Ethics 1-5 and M Oshana
`How Much Should we Value Autonomy' (2003) 20(2) Social Philosophy and Policy Foundation 99- 107.
216 S McLean and J Mason Legal and Ethical Aspects of Healthcare p. 47.
52
MacLean’s earlier arguments, it seems the information that the patient needs in order to allow a proper exercise of autonomy is what would enable him to consider the risks and effects of the available options (including not receiving treatment at all) rather than details of procedures that would have no importance to the decision whether to give consent. A
MacLean’s earlier arguments, it seems the information that the patient needs in order to allow a proper exercise of autonomy is what would enable him to consider the risks and effects of the available options (including not receiving treatment at all) rather than details of procedures that would have no importance to the decision whether to give consent. A