Overview
A forty-eight year old female patient was brought into the emergency department with petechiae/purpura distributed over her skin. Her husband reported that she started to bleed from her nostrils and mouth. She suddenly appeared to have had what seemed to be unexplained bruises on her body and was semi comatose. In a state of panic, her husband brought her to the emergency department. With a heart rate of 180, her blood pressure was 60/24 and she was going into endotoxic shock. She received emergency care that made her stable enough to be transferred to the ICU where she became conscious and able to communicate. The medical team explained the seriousness of her condition and their plans for her treatment but she declined their proposal for further care and complained about inadequate insurance coverage for that hospital. She further professed her faith in God for divine healing. The medical team was then faced with offering this patient treatment regardless of her ability to pay to avoid the imminent danger of her leaving the hospital at that time.
Medical Indications
This forty eight year old female patient, who had no medical history in this hospital was diagnosed with Disseminated Intravascular Coagulation (DIC).
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DIC is a rare, life-threatening condition that prevents normal blood clotting in an individual. A treatment refusal or decline may hasten the disease process resulting in excessive clotting (thrombosis) or bleeding (hemorrhage) throughout the body leading to shock, organ failure or even death. Prognosis varies depending on the underlying disorder and the extent of clotting. Regardless of the cause, the prognosis is often poor, with 10-50% of patients dying. The goal of treatment is to stop bleeding and prevent death. According to WebMD (2007), in DIC, the body’s natural ability to regulate clotting does not function properly.
This causes the platelets to clump and clog small blood vessels throughout the body. This excessive clotting damages organs, destroys blood cells, and depletes the supply of platelets and other clotting factors so that the blood is no longer able to clot normally. This often causes widespread bleeding, both internally and externally, a condition that can be reversed if treatment is carried out promptly. Current indication for treatment include interventions such as transfusion of blood cells and other blood products to replace what has been lost through bleeding. Numerous tests to establish the probable cause of this condition have to be done because it is usually a first symptom of a disease such as cancer or it could be triggered by another major health problem.
Patient Preferences
The patient is informed of the benefits of follow up interventions after emergency care as well as the likelihood of losing functions of major organs and even death without following interventions being implemented. The principle of autonomy comes to play since it is her right to choose where, when and how she gets her health care. Based on the medical report and her personal reasons for deciding to leave the hospital against medical advice, there seems to be no evidence that she is mentally incapable. There is also no justification in disregarding her requests nevertheless, it is doubtful if she actually understands and appreciates the situation. Her preferences were to be signed AMA (against medical advice) so she can find cheaper, alternative care. Her husband, who was present with her, tried to convince her to accept the teams’ proposal but she insisted that she could not afford it. In my opinion, the patient decision was as a result of her ignorance of what choices was available to her.
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Quality of life
The quality of life for this patient is severely compromised because of the symptoms associated with this diagnosis (bleeding, syncope, weakness, shortness of breath, etc).
As stated earlier, DIC could be as a result of an underlying disease such as cancer. If so, chemotherapy and radiation could help alleviate symptoms and give her a vibrant life expectancy. Also, there is the possibility that she would experience tremendous medical progress with treatment if her diagnosis has to do with platelet malfunction. However, we cannot tell, since she turned down any advice by the team to carry out blood tests. Without immediate treatment, she runs the risk of damage to major organs of her body, which could eventually lead to death.
Time is of essence here because the longer she delays intervention, the more likely she has irrevocable damage that might negatively alter her previous quality of life. Ethical issues that would arise with this patient is the emergency care she got, it got her stable enough to where she could refuse treatment. An assumption that we could make about receiving that care is, ‘what if she got into a DIC coma and had to be on a ventilator?’. She would have been unconscious and would probably not be able to debate whether she receives care or not. Contextual features
Without casting aspersions, the reason, obvious to me, for refusal of care is financial. The patient talked about shopping for cheaper healthcare. This is a patient born to American missionaries in Brazil. As an American citizen, she took up the calling of her parents and was also a missonary in Brazil for most of her life. She married a man from England who is unaware of how the American system works. Her reason is justified because she probably had little to no social security and with her sojourn in Brazil, we can say that she has been accultured. Therefore her outlook and way of thinking would affect her decision about healthcare in America.
Another contextual feature is that of religion and faith, the patient said that her faith in God would heal her but failed to see that this might be why she was at the hospital at that time. It is difficult to attribute her decision solely to faith or finance alone but one thing that stands out is the fact her husband tried to convince her otherwise. Still, she kept saying this was what she wanted. Her husband seemed helpless as he tried to communicate with the team however the patient kept saying that this was about her not him. My patient’s lack of insurance, her job as a missionary and her inability to pay acts as a bias that would prejudice the providers’ evaluation of her quality of life. Analysis
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The goal of medicine involves promoting health, curing disease, optimizing quality of life, preventing untimely death, improving function (maleficence), educating and counseling, avoiding harm (non-maleficence) and assisting in a peaceful death. The ethical dilemma is deciding to let her go based on her wishes (autonomy) versus doing what seems to be the overall right thing (paternalism), which is giving her treatment (beneficence), thus preventing harm (non-maleficence).
The maleficent nature of medicine propels the team to convince the patient of what they think would restore her health. In a bid to ‘do good(maleficence), she got emergency care that made her stable enough to communicate and state her wishes. Apart from maleficence and non-maleficence there are multiple ethical issues embedded in this case; the medical team is faced with honoring this patient’s autonomy and letting her go when they know she could be dead in a few hours without treatment.
Nevertheless the patient is exercising her autonomy at her own detriment because she and her husband got adequate disclosure communicated clearly by the healthcare team about the reasons for treatment and the benefits & burdens related to her decision. The team’s scope of disclosure covered her current medical state, the possible interventions to improve prognosis and their recommendation based on clinical judgement. In addition, they are faced with medically determining her decisional capacity because of the possibility that her mental state might be affected by the pathology and her inability to afford care. If proven to be incompetent, then interventions are carried out regardless of what she wants. Hence, the medical team will deliberately override this patient’s autonomy because of their perceived notion of beneficence (paternalism).
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As medical practitioners, the team weighs the consequence (utilitarianism) of letting her go. To them, the action that would produce the best overall result is to go ahead and give her treatment. The ethical theory of deontology gives the team, the moral duty and obligation to do good and prevent harm. Compassion and sympathy (Ethics of care) also play a big role here, consider a patient who had committed her life to helping others, yet in her time of need could not get reciprocity. These emotions should play a major role in how the team decides to proceed. The nurse involved with this patient has an obligation to get to know this patient so that she can effectively advocate for her. Inasmuch as I know she has the right to refuse treatment, I strongly believe that her refusal is based on the insubstantiality of information and her lack of knowledge of what is accessible to her.
Recommendation
I recommend that the patient’s autonomy be empowered not overpowered by giving her information on what is available to her. An advocate (her nurse, case manager or social worker) should be assigned to her. In addition, the Chaplain should be invited to offer spiritual counseling. Asking the right questions, getting to understand her fears and giving her hope. Many hospitals and clinics have patient navigators that can help determine financial aid for patients who cannot afford care or who do not have Medicaid/insurance.
The team should encourage the patient that at this point money is of no consequence, her life and health come first in other words everything will be done to get her aid. I also recommend that the team critically asseses the decision-making capacity of the patient since it determines whether a patient’s health care decisions will be sought and accepted. Furthermore the patient should also be educated on and encouraged to put in place advanced directives to promote her autonomy and avoid a situation where there is no one to decide in case she is incapacitated.
Justification
In my opinion, Individuals respond favorably to people, things, beliefs and circumstances that hold significance, value and passion for them. Pesut’s (2009) article, confirms that incorporating spirituality into care where appropriate, has the potential to maximize health care quality. For this to be effective, the healthcare team has to look at the patient holistically, they have to put into consideration her profession of faith and how getting the chaplain involved will convince her that the medical team does not just want her money rather they value her worth. Subsequently, paternalism as a recommendation seems to be arbitrary and counteracts the autonomy of the patient, yet Whitney and McCullough (2007) in their article Physicians Silent Decisions: Because Patient Autonomy Does not Always Come First, give support to selective paternalism. They argue that Patients’ values and preferences play varying roles in medical decisions (Whitney et al. 2004).
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Indeed my patient’s refusal to accept care was not because she wanted to die but because her values of faith and her preference to spend within her means trumped getting the immediate intervention. Suffice to say that culture can be considered in this case because it influences values and preferences. My patient’s background was Brazilian, this is a country where there is little trust for the healthcare system. Hospitals and clinics are more interested in how much money they can make. So, Individuals that reside there, do not have routine checkup, they often wait till they are about to die before they go to a physician. And in this time they are constantly visiting places of worship in belief that they would be miraculously healed. As a result, my patient probably had many symptoms over a period of time but did not go to the hospital, incidentally when she was brought in, it was a matter of life and death. With the team’s knowledge of her diagnosis and its prognosis, my patient’s preference became largely irrelevant. Yet, the physicians wanted to respect her autonomy and her sense of dignity by maintaining her part in the decision-making.
As medical practitioners we uphold the goals of shared decision-making and of empowering patients to make important choices. However, these objectives provide important insights, not universal answers. In medicine, as elsewhere, individual choice, however highly we value it, must compete with individual welfare and with constraints of time and money hence the decisive factor will depend on the particular situation at hand. (Whitney and McCullough 2007 p. 37).
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Next, they explained that decision-making, whether silent or spoken by the physician must be understood in terms of the clinical encounter. In fact the overriding of her autonomy was for her own good. My rationale for encouraging advanced directives especially if she is deemed competent at the moment is, in the event that she can no longer make a decision in the future, something and someone will be in place to help. It will help to guide future clinical decisions and promote confidence in the decision of the surrogate she chooses.
According to Lynch, Mathes and Sawicki (2008), patients are in the best position to make choices for themselves, or at least a position that is superior to that held by any other party. Therefore, patient directives must be enforced, though not through the mechanism of strict liability. (p. 158).
Therefore, a decision written and signed by the patient legally would prevail, in the event that she becomes incapacitated and cannot decide she would already have that in place. Medical practitioners are encouraged to inform all patients’ about the importance of advance directives because it removes the burden of dealing with what the patients would have wanted. In summary, the discussion and justification of proceeding with medical intervention yet disregarding the patient’s decision, proves that autonomy can be respectfully countered. This is congruent in continuing with medicine’s obligation to ‘do no harm’, ‘do good’ and serve in the best interest of the patient.
Evaluation
The desired outcome was that this patient receives the care and intervention that she needed in time to prevent gross damage to her body thus altering her quality of life. With the input of the chaplain, her husband, the advocate and careful communication with this patient, the patient admits that she wanted the best care. She accepts the offer for financial assistance and receives the appropriate intervention. The nurse and medical personnel express satisfaction in saving her life (maleficent), Her husband is elated and he also signs an advanced directive for himself. It seemed difficult to convince the patient at first but once the suggestion for financial aid and the Chaplain was received, the patient complied with all other recommendations.
References
Lynch, H. F., Mathes, M., Sawicki, N.N., (2008).
Compliance With Advance Directives: Wrongful Living And Tort Law Incentives. The Journal Of Legal Medicine, 29:133–178. Retrieved from http://www.ncbi.nlm.nih.gov.proxy.medlib.iupui.edu/pubmed/18569439 Pesut, B. (2009).
Incorporating patients’ spirituality into care using Gadow’s ethical framework. Nurs Ethics. 2009 Jul;16(4):418-28.Retrieved from http://nej.sagepub.com.proxy.medlib.iupui.edu/content/16/4/418.long WebMD, (2007).
Retrieved November 26, 2012, from
http://www.webmd.com/a-to-z-guides/disseminated-intravascular-coagulation-dic-topic-overview Whitney, S. N., McCullough, B. L. (2007).
Physicians’ Silent Decisions: Because Patient Autonomy Does Not Always Come First. The American Journal of Bioethics, 7(7): 33–38, 2007. Retrieved from http://mcr.sagepub.com.proxy.medlib.iupui.edu/content/early/2012/10/31/1077558712461952.long
