Human Rights: The right to informed consent

” For many decades the vast majority of the South African population has experienced either a denial or violation of fundamental human rights, including rights to health care services”.- National Patients’ Rights Charter

In this post, I would like to explore the rights of patients within the South African context, with emphasis on the right to informed consent, and with reference to an ethical dilemma I had while on a clinical rotation at Groote Schuur hospital.

For my 3rd clinical block this year, I was rotating between the Neurosurgical ICU and the Neurosurgical ward and I met a patient who was referred for physiotherapy. This said patient had just undergone surgery to remove a malignant tumour. However, only 90% of this tumour had been resected. Three days later, the patient’s level of function was progressing well, only for the patient’s progress to plateau and then decline to the point where his speech began to slur and was unable to move his left arm and leg. The patient was sent for a CT brain, and it was discovered that the patient’s cancer had progressed to stage 3 and that he had experienced a CVA on site of the operation he had just undergone. Although the news or the prognosis was bad, what surprised me was that the medical team had decided to withhold this information from the patient, preferring to send him home and had decided telling him the news a week later upon his return to hospital. My clinical partner and I were put in the difficult position of having to refrain from telling the patient about what was happening to him, all the while treating him and conversing with him like it was just another treatment session, which was bittersweet because we enjoyed our treatment sessions with him but we knew the extent of his condition and we were not able to say anything.

According to the National Patients’ Rights Charter, patients have the right to 1) a healthy and safe environment, 2) access to health care, 3) knowledge of one’s health insurance/medical aid scheme, 4) choice of health services, 5) to be treated by a named health care provider, 6) confidentiality and privacy, 7) informed consent, 8) refusal of treatment, 9) a second opinion, 10) continuity of care, and 11) to have complaints about health services (Department of Health, 2008). Under the heading “informed consent” it states: “Everyone has a right to be given full and accurate information about the nature of one’s illnesses, diagnostic procedures, the proposed treatment and risks associated therewith, and the costs involved” (Department of Health, 2008).

Furthermore, the American Medical Association states that withholding relevant medical information from patients in the belief that disclosure is medically contraindicated creates a conflict between the physician’s obligations to promote patient welfare and to respect patient autonomy, and in some cases has resulted in legal action, e.g. in Canterbury, USA a man was advised by his physician to undergo a laminectomy- surgical excision of the lamina of the vertebral arch, in an effort to alleviate back pain (“Laminectomy”, 2019). The physician, aware that 1 percent of laminectomies resulted in paralysis, did not advise the patient of the risk because he believed this might cause the patient to reject the intervention. Following the surgery, the patient fell from his hospital bed and was paralysed. However, it was unclear whether the surgery or the fall caused the paralysis. That patient then sued his physician, citing that the physician had failed to inform him of the risks of the procedure. The result of the case was in the patient’s favour, with the final ruling stating that a physician must disclose: 1) the condition being treated; 2) the nature and character of the proposed treatment or surgical procedure; 3) the expected results; 4) possible alternative forms of treatment; and 5) serious possible risks, complications, and anticipated benefits involved in the treatment or surgery, as well as the possible alternative forms of treatment, including non-treatment (Murray, 2012).

However, there are exceptions to this ruling. The first applies when both the patient is unconscious or otherwise incapable of consenting, and the benefit of treating the patient outweighs any potential harm of the treatment. Under these circumstances, the physician is not required to obtain informed consent before treating, but must do so as soon as it is medically possible. The second exception applies when disclosing medical information would pose harm to the patient, e.g. when a patient has become so emotionally distressed that he or she would be rendered incapable of making a rational decision, US courts generally do not require a physician’s disclosure. If disclosure is likely to cause psychological harm to the patient, a physician is not obliged to disclose (Murray, 2012).

The above case poses a significant ethical dilemma, but after reading the above information, I can understand why the doctors and the medical team decided against letting the patient know about his CT brain results, as it would have been news that would be difficult to process, and such news risked further deterioration of the patient’s condition. It is also worth noting that if the patient was sent home without being informed and his condition worsened, the patient’s family would be left asking why they had not been informed sooner. So, therefore, according to the National Patient’s Rights Charter, it appears that withholding such information has violated the patient’s human rights.

However, according to the literature, the medical team had legal ethical grounds for withholding such information.

References

Department of Health. (2008). National Patients’ Rights Charter (pp. 1-3). Pretoria: Health Professionals Council of South Africa.

Laminectomy. (2019). The Free Dictionary. Retrieved from https://medical-dictionary.thefreedictionary.com/laminectomy

Murray, B. (2012). Informed Consent: What Must a Physician Disclose to a Patient?. American Medical Association Journal Of EthicsVolume 14(7), 563-566. doi: 10.1001/virtualmentor.2012.14.7.hlaw1-1207.

3 thoughts on “Human Rights: The right to informed consent

  1. Good evening Tim.
    I really enjoyed reading your post and found this experience very interesting to read. I definitely agree that this is a ethical dilemma that puts you in an uncomfortable position.
    I really liked the way you explained the reason why the doctors would want to have not told the patient, but that you also included what the consequences may have been if something detrimental had happened at home. My suggestion would be to include your opinion on what you think would have been the best approach or do you agree with what the doctors did? For example, do you think the doctors should have told the family and discussed it with them on how they feel about telling the patient-however this is then possibly also an ethical dilemma as the patient should be the centre of decision making… not the family.
    With regards to your spelling and grammar, I found minimal mistakes. I would just changed some of your words to make it better academic writing eg. “fast forward 3 days” in my opinion the “fast forward” is more conversational… so i would suggest simplifying it to just “3 days later…etc”
    You had one in-text reference and one quote…Perhaps find another source to support your writing with regards to informed consent and knowing the nature of their illness. Also remember to add them to the reference list at the end, not just as an in-text reference.
    I hope these ideas assist you in completing this assignment.
    Regards,
    Halinka.

  2. Hi Tim

    Thank you for sharing your piece and your experience. I found your experience and topic of choice quite interesting and could see how in certain government health facilities you could find yourself in such situations, as described. First of all, I think it is an important topic that you wrote about, and something we as students should know very well – which are patient rights. We often find ourselves in situations were these rights are violated, and in order for us to identify this, we need to know the rights in the first place. Your writing was very logical and easy to follow, which made it a pleasurable read.

    Content: Like previously mentioned, I enjoyed your topic of choice and the content regarding it. I think it was great that you added the patients right charter and elaborated on ” informed consent”, as that gave me, as a reader, a bit more of an understanding and background, which made the ethical dilemma you found yourself in very clear. You explained the whole situation and incident very well. I think perhaps referencing articles or blog posts (external resources) about similar events could possibly add to your content in a positive way. Perhaps you could also view this problem in a South African context and reference how often these situations occur in government settings.

    Argument: What I missed from your argument, was how you felt knowing you were violating the patient’s right and withholding information regarding his health from him and what actions you took regarding this. You could perhaps also add what you could have done in this situation – possible solutions which you can use if you were ever in a similar situation again. You also mentioned that if something had happened to him at home, the family would possibly be left asking questions about why they were not informed. I believe such a situation could possibly have much greater consequences such as law suits – I think it would strengthen your argument of the important of patients’ rights if you perhaps looked into the consequences of such violations and what the impact of these consequences could have been on you as a student.

    References: You had one in-text reference in your writing piece, but I think your piece would greatly benefit from some more references to external sources. Also remember to add them in-text as well as in a reference list at the end of your writing.

    Grammar and Spelling:
    There were some minor grammar and spelling error in your writing. I highlighted these for you with annotations (you will be able to view them in the sidebar) to make it easier for you to find and address.

    Overall I think your piece has a lot of potential and with a few elaborations and adjustments, it will make for an even better writing piece.
    I hope you found these comments helpful, please let me know if anything was unclear.

    Good luck and all the best
    Janine

  3. Hi Timothy,

    Thank you for allowing me to read your piece on the rights of patients within the South African context. I enjoyed reading your piece and gaining more insight to what this topic means to you. Your writing piece reflects on the topic’s discus in the class. Therefore, I would rate your content as good. I liked how you explained the ethical dilemma you were faced with. It is a very difficult to withhold information from a patient but knowing that if you share the information with the patient the patient stands a chance to deteriorate. Your writing piece made me think of my own clinical practice and what I would have done in this situation. Perhaps you can add more content to your piece by referring to why patients’ rights get violated in South Africa.

    I liked the argument you made in your fourth paragraph where you are mentioning the patients’ rights and how the rights were violated. Perhaps you could make your argument stronger by adding how this will affect the patient in his near future. In your concluding paragraph you mentioned a true ethical dilemma you were faced with. Maybe you could add some reference to why the doctors thought by withholding information from a patient would prevent the patient from deteriorating. Furthermore, you can also add what consequences the doctors face if the patient realizes that they withhold information from him. I remember reading you mentioned that the patients’ condition can worsen without him knowing why. Maybe you can add to what effect his condition can worse and how knowing his diagnosis earlier could have prevented this from occurring.

    Adding references to the writing piece made your argument stronger. You in-text referring is correct according to APA-style. Remember to add your reference list at the bottom of your writing piece. To make your writing piece stronger try to get references from both sides of the argument.

    Few grammar errors that I have noticed:
    Third paragraph:
    Second sentence: This
    Fifth sentence: “CVA on site of the the operation he had just undergone” – Only one the
    Sixth sentence: “decided to withhold” – Change to decide to withhold

    Fourth paragraph
    Last sentence: Add coma after therewith “risks associated therewith,”

    Last paragraph
    Second sentence: Add coma after process “that would be difficult to process, and”

    Overall, your writing piece touches on a real ethical dilemma that you were faced with and hopefully would never have to face again. The paragraphs are well constructed and easy to read. I hoped my comments is going to be of good use.

    Good luck with your final
    Megan

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