Essay on Philosophical Bioethics

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The Facts: Chara’s mother died of bowel cancer at the age of 46. She was found to have Familial Adenomatous Polyposis (FAP), a hereditary condition that involves the development of many pre-cancerous polyps in the bowel. If FAP is not treated, bowel cancer will almost always develop in one or more polyps. Colonoscopy can detect cancerous lesions early, and treatment is effective with different types of colon surgery. The surgical removal of the entire colon (colectomy) is also an option for individuals with a high number of polyps and consequently, a high risk of colorectal cancer. FAP is caused by a gene called APC. A genetic counselor explains there is a 50% chance that Chara has inherited the gene.1 Chara states that she does not wish to have either the genetic test or a colonoscopy. The counselor ensures that Chara has understood the key facts, but Chara does not change her mind about undergoing testing or investigations

Intro

The purpose of this essay is to show why it would be ethically justifiable for the counselor to pressure Chara into reconsidering her decision by successfully showing why not accepting the first decision a patient makes as the last decision they will make on the matter does not impede the autonomy of a patient nor does it promote paternalism but in turn allows the patient to make the most informed decision possible. Through firstly showing the potential limitations of using the patient’s autonomy as a defense in arguing that it would be unethical for the counselor to pressure the patient into reconsidering their decision; I will then highlight the importance of the relationships between patients and clinicians; and illustrate the limitations of the counter-arguments against pressuring the patient based on paternalism.

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Autonomy

Often cited as one of the four key principles, if not the cornerstone of bioethics, in its simplest form, autonomy can be defined as the freedom to control one’s own life.[footnoteRef:1] Equally important in medicine is the right to respect a patient’s autonomy.[footnoteRef:2] Often held as a negative right, it is one which cannot be manipulated,[footnoteRef:3] particularly if the decision is deemed to be maximally autonomous.[footnoteRef:4] [1: John Harris, The Value of Life: An Introduction to Medical Ethics (Routledge 1985)] [2: Manne Sjöstrand and others, 'Paternalism in the Name of Autonomy ' [2013] 38 Journal of Medicine and Philosophy 710–724] [3: Tännsjö, T. Coercive Care: The Ethics of Choice in Health and Medicine. (London Routledge 1999)] [4: Op Cit (Fn 4)]

Hill wrote that to override this for “His own good, either physical or moral, is not a sufficient warrant.”[footnoteRef:6] It is then the instinctive answer is to say that any attempt to pressure Chara would automatically be unethical. This is not only the uncomplicated position but also one that is deeply founded in literature and could be readily accompanied by the additional bioethics principle of Justice for like cases should be treated the same.[footnoteRef:7] Moreover, in a world of finite resources the time spent to pressure one patient into treatment is time spent away from another patient who readily accepts treatment.[footnoteRef:8] Pressuring a patient is therefore not only unethical against the patient in question; but also against the additional patients who will be affected as a result. [5: John Stuart Mill, On Liberty (4th ed, Longmans, Green, Reader & Dyer 1869) at page 22] [6: Helga Kuhse and others, Bioethics: An Anthology (3rd ed, Blackwell Philosophy Anthologies 2015)] [7: Charles A. Foster, Choosing life, choosing death: The tyranny of autonomy in medical ethics and law (Hart Publishing 2009) at page 18.] [8: Ibid]

Where complications start to arise is when one stops to consider if a patient can ever be maximally autonomous; even if they appear to be. Each medical decision; or at least the first response given in each; I argue can never be a maximally autonomous decision; particularly in instances such as this. The very nature of this type of medical decision means that it will likely not be a pleasant decision to make and will ultimately have a major impact on the patient’s life. As a result, each decision that is made will be unquestionably influenced by past lived experiences not simply by the medical information they have been given; regardless of how well they have understood this information: ‘‘Experience also plays a very important role. Imagine, having had a friend who died just because he did or did not receive the same treatment.”[footnoteRef:9] [9: Titia van Steffens et al, 'The medical practice of patient autonomy and cancer treatment refusals: a patients’ and physicians’ perspective' [2004] 58 Social Science & Medicine at page 2334]

Huijer and Van Leeuwen[footnoteRef:10] state that refusals of treatment that are influenced by former experiences cannot be viewed as an autonomous choice. We know that Chara lost her mother to bowel cancer; evidently then, and by the very definition of being maximally autonomous given by Harris[footnoteRef:11], Chara has a defect in her reasoning, and through the additional argument presented by Huijer and Van Leeuwen, Chara’s refusal of treatment cannot be seen to be a maximally autonomous decision. [10: Huijer, M., & Van Leeuwen, E. ‘Personal values and cancer treatment refusal’. [2000] 26 Journal of Medical Ethics 358–362] [11: Op Cit (Fn 1)]

It could rightfully be argued therefore that clinicians have an ethical obligation to attempt to remove the defect where possible, particularly if the defect is in the patient’s reasoning, through providing further relevant information be it medical or otherwise. In order to make such an attempt, clinicians would then surely have to exhort a level of pressure on patients in order for them to reconsider their first decision.

Relationships v. Paternalism

Relationships

In 2013[footnoteRef:12], when a patient was informed that she was facing a 32% survival rate with treatment in her battle against cancer she informed her oncologist that she was going to refuse treatment. In the days that followed each of her Doctors attempted to get her to reconsider and accept the treatment. Upon receiving this further information, the patient then asked her oncologist to study the literature and tell her the survival rate if she refused treatment, was 26%. With this additional knowledge, the patient reiterated her first decision stating: [12: Frenkel Moshe, 'Refusing Treatment' [2013] 18 The Oncologist 634– 636]

“I’ve decided that I’m willing to risk losing the theoretical 6% advantage chemotherapy would give me. Chemo would destroy my quality of life. I am not doing it.”[footnoteRef:13] [13: Ibid at page 634]

In this case upon attempting to pressure the patient into reconsidering; the clinicians tried to remove the defect in her reasoning and crucially learned that her decision was not solely based on experiences but incorporated the medical information surrounding her survival rate.

This example is not the exception to the rule[footnoteRef:14] and undoubtedly shows that the point at which the actions of clinicians are to be deemed either ethical or unethical cannot instinctively be at the point of attempting to pressure the patient to reconsider because, if done correctly, the autonomy of the patient will not be infringed nor will the clinicians be acting paternalistically. Van Kleffens et al put forward this theory when they suggested that physicians are able to disagree with the patient’s decisions and then discuss these decisions while still respecting patient autonomy.[footnoteRef:15] [14: See also, Citrin DL, Bloom DL, Grutsch JF, et al. ‘Beliefs and perceptions of women with newly diagnosed breast cancer who refused conventional treatment in favor of alternative therapies’. The Oncologist [2012] 17 607– 612] [15: Titia van Steffens et al, 'The medical practice of patient autonomy and cancer treatment refusals: a patients’ and physicians’ perspective' [2004] 58 Social Science & Medicine 2325–2336]

As has been shown above, personal feelings and past lived experiences can often take the forefront in a patient’s decision-making process. Whether this is right or wrong is irrelevant; the crucial point is that when this takes place the important medical information that is needed to allow patients to make informed decisions can be lost and subsequently their decision cannot be deemed to be an autonomous one.

Van Kleffens et al support the argument of Huijer and Van Leeuwen[footnoteRef:16] above by stating that the patient can only effectively use the medical information they have received after the physicians have given it in a way that fits with patients’ perspectives of life.[footnoteRef:17] If this is true, then without doubt the only way to establish this perspective is through further dialogue with the patient. Understandably this could and can be done before the patient has made their decision on the treatment; but if it cannot, and the patient decides instantaneously that they will refuse treatment; how can efforts to pressure the patient to reconsider ever be viewed as unethical? [16: Op Cit (Fn 10)] [17: Op Cit (Fn 15) at page 2332]

Paternalism

Viewed in the most binary terms, everything that has been mentioned above should be viewed as strong paternalism. Clinicians are attempting to override the decisions made by Patients with full capacity by inflicting pressure. After all, how can clinicians ever know better than the patients themselves what the patients truly want?[footnoteRef:18] Certainly, they can know what is in their best interests, medically speaking, but as has been shown above that may have little relevance to what they want. The question that must be asked then is: When pressuring a patient, do the traditional definitions of Paternalism apply? [18: Manne Sjöstrand and others, 'Paternalism in the Name of Autonomy ' [2013] 38 Journal of Medicine and Philosophy 710–724]

Usually, weak paternalism refers to instances where a patient has limited to no capacity to make autonomous decisions and subsequently Joel Feinberg argues that it is severely misleading to view weak paternalism as paternalism at all.[footnoteRef:19] Additionally, as has been shown above simply because a person appears to have full capacity when they are making decisions does not necessarily mean they have. As such, it could be argued that in the majority of circumstances, strong paternalism is in fact weak. Subsequently, arguments of paternalism cannot apply when facing circumstances of clinicians exhorting pressure on patients to reconsider their decision if it has been influenced by experiences and therefore is not an autonomous decision. [19: Joel Feinberg, Harm to Self (Oxford: Oxford University Press, 1986), p. 14]

In Chara’s case, we can rightly state that from what has been shown above, simply because she appears to have capacity does not implicitly apply that she does; as her decision has been undoubtedly influenced by the death of her mother, her choices cannot be deemed to be autonomous; therefore the ethical argument against pressuring Chara based on paternalism cannot apply.

Levels of Pressure

Understandably, the level and types of pressure that is exhorted on patients have a direct effect on whether the actions of the clinician can still be deemed to be ethical. If the pressure is aggressive or persistent despite continuously receiving the same answer, or upon discovering that the decision is not based on experiences but on religious, cultural, or philosophical convictions; then this should be deemed to be unethical.[footnoteRef:20] Additionally, there is undeniably a point where the actions of clinicians cross from being pressured to being true coercion, and subsequently for pressure to ever be ethical, there should be a limit on the number of attempts that can be made. The point however on which this occurs is extremely difficult to establish and varies with each situation and consequently, it would be irresponsible to set a numerical limit; particularly if patients refuse to receive information. [20: Bernard Dickens, ‘Patients’ refusal of recommended treatment’ [2015] 128 International Journal of Gynaecology and Obstetrics 280–281]

Glick states that when considering coercion in medical decisions, it is important to understand that for a decision to be autonomous then it must not only be free of coercion by a physician but also by the overall circumstances;[footnoteRef:21] and as has been shown above in most cases it appears the overall circumstances often coerce the patient even before the clinician has the chance to coerce. Similar to that paternalism, if the overall circumstances have coerced the patient can clinicians ever be deemed to be acting unethically if they are attempting to reverse the coercion of the overall circumstances? If you fundamentally believe that the ethical purpose of giving further information is not in an attempt to induce their consent but is done so in an attempt to remove the defect in their reasoning and thus strengthen their ability to make autonomous decisions;[footnoteRef:22] then pressuring a patient to receive further information and reconsider their decision cannot be viewed to be an act of true coercion in the traditional sense. [21: Shimon M Glick, The morality of coercion, [2000] 26 Journal of Medical Ethics 393–395] [22: Op Cit (Fn 20)]

There is general consensus that a patient has the right to refuse information and treatment.[footnoteRef:23] However there is also consensus that a patient is unable to make an autonomous decision if they have not received the relevant medical information. If then it is the case that all instances when a clinician pressures a patient to reconsider their decision are deemed to be ethical and not coercion or paternalism; then in theory the clinician could be as aggressive and unrelenting as they wish in their pursuit to pressure the patient. In reality, however, the situation is much more complex, and the moment a clinician begins to act aggressively the situation changes and ultimately the minute details surrounding theoretical ponderings should be removed in favor of whether the patient is harmed through the actions of the clinician. It is clearly something that warrants much more thought from bioethicists and that is why I argue that the first attempt to pressure a patient cannot be seen to be unethical. [23: Op Cit (Fn 18)]

Conclusion

Contemporary views in medical ethics often hold the principle of respect for patient autonomy above the principle of furthering patient well‐being.[footnoteRef:24] Through what has been shown above however, when decisions based on experiences have been made, there is perhaps a new kind of paternalism that exists; a kinder, gentler variant;[footnoteRef:25] and could be seen more appropriately as ‘compassionate interference’ rather than paternalism at all.[footnoteRef:26] [24: Shlomo Cohen, “The Nocebo Effect of Informed Consent,” [2014] 28 Bioethics 147–154.] [25: Benjamin W Corn ‘Medical paternalism: who knows best?’ [2012] 38 (2) The Lancet Oncology 123-124 ] [26: Marian Verkerk, ‘A Care Perspective on Autonomy and Coercion’ [1999] 13 (3/4) Bioethics 358 - 369]

This essay has argued that these types of decisions cannot be viewed as autonomous. As such the first decision a patient makes on the matter should not be the last in any medical decision. Thus if done so correctly, pressuring a patient into reconsidering their decision will not infringe on the autonomy of the patient; be an act of paternalism, or; be coercion; but is arguably the ethical thing to do if it is an attempt to ensure the decision being made is an autonomous one. Therefore, the point that actions are deemed to be unethical cannot be at the first attempt to pressure a patient.

Bibliography

Journals:

  1. Shlomo Cohen, “The Nocebo Effect of Informed Consent,” [2014] 28 Bioethics 147–154.
  2. Benjamin W Corn ‘Medical paternalism: who knows best?’ [2012] 38 (2) The Lancet Oncology 123-124
  3. Citrin DL, Bloom DL, Grutsch JF et al. ‘Beliefs and perceptions of women with newly diagnosed breast cancer who refused conventional treatment in favor of alternative therapies. [2014] 17 The Oncologist 607– 612
  4. Bernard Dickens, ‘Patients’ refusal of recommended treatment’ [2015] 128 International Journal of Gynaecology and Obstetrics 280–281
  5. Frenkel Moshe, 'Refusing Treatment' [2013] 18 The Oncologist 634– 636
  6. Shimon M Glick, The morality of coercion, [2000] 26 Journal of Medical Ethics 393–395
  7. Huijer, M., & Van Leeuwen, E. ‘Personal values and cancer treatment refusal’. [2000] 26 Journal of Medical Ethics 358–362
  8. Manne Sjöstrand and others, 'Paternalism in the Name of Autonomy ' [2013] 38 Journal of Medicine and Philosophy 710–724
  9. Marian Verkerk, ‘A Care Perspective on Autonomy and Coercion’ [1999] 13 (3/4) Bioethics 358 – 369
  10. Titia van Steffens et al, 'The medical practice of patient autonomy and cancer treatment refusals: a patients’ and physicians’ perspective' [2004] 58 Social Science & Medicine

Books:

  1. Helga Kuhse and others, Bioethics: An Anthology (3rd ed, Blackwell Philosophy Anthologies 2015)
  2. Charles A. Foster, Choosing life, choosing death: The tyranny of autonomy in medical ethics and law (Hart Publishing 2009)
  3. Joel Feinberg, Harm to Self (Oxford: Oxford University Press, 1986)
  4. John Harris, The Value of Life: An Introduction to Medical Ethics (Routledge 1985)
  5. John Stuart Mill, On Liberty (4th ed, Longmans, Green, Reader & Dyer 1869)
  6. Tännsjö, T. Coercive Care: The Ethics of Choice in Health and Medicine. (London Routledge 1999)
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