This case illustrates the dilemma that occurs when a patient refuses treatment. When a patient refuses recommended interventions, it can cause much distress among the medical team and family. On the surface, the ethical issue appears to be in regard to treatment refusal. However, when we look deeper, it becomes evident that the question is truly about whether the patient has the ability to make this treatment decision, given her worsening dementia, recent hemorrhage, and depression. In this case, an essential component of an ethics consultation would be to assess this patient’s decisionmaking capacity to determine if her refusals are informed. This case has another level of complexity. If the patient does not have decisionmaking capacity, then who would be willing to serve in the role of surrogate decisionmaker? The case raises several ethical questions and thus makes directing a patient’s care and decisionmaking challenging.
Respecting the patient’s wishes, or respecting autonomy, is one of the fundamental principles of bioethics and medicine. It underlines the important moral concepts of informed consent and the right to refuse medical treatment. However, in order to make informed decisions, the patient must have decisionmaking capacity. When a patient disagrees with medical recommendations, it appears to initiate concerns about whether the patient is decisional. A mere disagreement should not be grounds for questioning capacity. In this case, an ethics consultation would be helpful in addressing the conflict around the patient’s refusal of treatment, in guiding medical decisionmaking, and in dealing with the distress that this situation causes for the younger sister as well as the medical team.
Dementia and Decisionmaking
We are told that KS has worsening dementia. A question to consider is how this diagnosis affects this patient’s ability to make decisions regarding her care. Patients with dementia are often assumed to lack decisionmaking capacity. Although patients with dementia may have diminished insight into their cognitive and functional deficits, some demented patients may still be able to make reasoned decisions regarding their care. Orientation questions such as the date, month, year, and location are often used to assess capacity. However, in order to appropriately assess decisionmaking capacity, the questions must be more in-depth and complex. Demented patients who have a greater degree of decisionmaking capacity may be able to make a choice about life-sustaining medical treatment and may also be able to choose to forgo certain treatments. Some patients who are unable to make medical decisions may still be able to make decisions regarding how they want to live their life. Given KS’s cognitive impairments and minimal speech, assessing her for decisional capacity may be difficult, as she would not be able to easily participate in discussions or respond appropriately to questions. The team can use alternative means to communicate with her, such as repeating information or showing pictures, to assist her in understanding her medical condition and to help her express her preferences. The medical team should make every effort to assess if KS truly lacks decisionmaking capacity due to her dementia.
Depression and Decisionmaking
The case describes KS as being depressed. Is she on medication? If not, should she be? To what degree might this interfere with her decisionmaking? If she has not received a psychiatric consultation, she may benefit from one. It is important to note that not all patients who are depressed or have mental health illness lack the ability to make their own medical decisions. KS’s depression may be contributing to her refusal of treatment. A psychiatric consultation may be helpful in assessing if her depressed state could be treated such that she is more agreeable to understanding and receiving required care.
Prognosis from Acute Neurological Insult
We know that the patient has suffered a cerebral hemorrhage, and neurosurgery has provided its opinion that surgical interventions are not indicated at this time. However, a question that needs to be addressed is whether any degree of cognitive impairment this has caused may lessen over time. An indication of the patient’s neurological prognosis could help the team understand if the patient has a likelihood of improved cognition over time. If such improvement can indeed be expected, the team would have a chance of having a more meaningful interaction with the patient.
Bases for Refusal
KS’s refusal of treatment prompts the request for an ethics consultation, but we are not told on what basis she is in fact refusing certain treatments. Is it because she fears pain/discomfort? Has she had an experience in the past that influences her now? Is she laboring under false understanding or information regarding treatment? Could it be based on cultural identification or religious beliefs? In this case, it is unclear if KS understands her poor overall prognosis and the ramifications of her decision to refuse the nasogastric feeding tube. Many patients find nasogastric feeding tubes to be uncomfortable and ultimately pull out their tube, resulting in, ultimately, being put in restraints. In this case, let’s assume that KS has the ability to express her preferences and make simple decisions but that she does not have the ability to make complex decisions regarding her healthcare. Although her refusals may not be informed, her refusals are, nevertheless, important and should be respected and taken into consideration when developing a treatment plan. Even though KS may be compromised, it would not be appropriate to force treatments on her. If the nasogastric tube were placed and KS repeatedly pulled it out, it could cause more harm. Thus, the burden of the treatment would outweigh the benefit.
Values and Beliefs
KS is described as being Burmese. What does this mean? Does it imply ethnicity or something more in terms of values or religious beliefs? If it implies religious beliefs, how would that influence her wishes in her current situation? It is easy to assume that KS and her sister share the same beliefs, but we do not know if that is indeed accurate. Perhaps the sister is voicing her own views and not those of the patient. It would be helpful to explore if the patient’s primary care provider had any extended discussions with the patient about her wishes and preferences or who she would want involved in medical decisionmaking if she were unable to make decisions herself. We know that KS has been living in a residential setting. There may be staff members at her facility with whom she may have shared her values at a time when her cognitive function was better than in the current situation.
Surrogate Decisionmaking
If KS is determined to lack decisionmaking capacity and unable to make reasoned medical decisions, she may still be capable of identifying a surrogate decisionmaker. The capacity assessment presents an opportunity to ask KS if there is a person whom she trusts to make healthcare decisions on her behalf. In this case, although the younger sister is unwilling to step up into this role, if the patient identifies her as a decisionmaker, the sister may be more willing to assume this role.
From a cultural perspective, it seems that the sister wants guidance from the patient. It may also be that she struggles in this role because the patient does not have an advance directive, and she is unclear about the patient’s wishes about a feeding tube. When family members are expected to make medical decisions, there is a distress and burden that comes with having to take on the role and the decisions they are being faced with. It is even more difficult when family members are unclear about what their loved one’s wishes are. The patient’s sister should also be made aware that if she is unable or unwilling to function in the role of the surrogate decisionmaker, the team would make decisions for the patient in conjunction with the ethics committee. Many family members do want to be involved in the decisionmaking process, especially when it comes to crucial medical decisions. What they may need, however, is the support and assistance of a professional healthcare provider who can assure them that they are not alone in this process and will have access to required resources from clinicians who have the patient’s best interest at heart.
Answering the questions raised previously would be key to this ethics consultation. Clear guidance and recommendations from the patient’s medical team and a provider who has an established relationship of trust with the patient can be instrumental in facilitating decisionmaking. It would be helpful to have a family meeting with the patient’s medical team, sister, and the ethicist. The physician should clearly explain the medical condition, treatment options, risks, benefits, and possible outcomes. The ethicist can be helpful in providing support and posing questions to help the sister guide the team in making the best decisions for KS. These questions could involve discussing what was important to the patient, what she enjoyed doing, or what she would consider to be a good quality of life. All of these open-ended questions could assist during this challenging process of shared decisionmaking. If the sister were able to answer some of these questions, care decisions for KS could be made using the standard of substituted judgment. She may be able to tell, for instance, that KS loved exploring new cuisines and would go out to dinner once a week with her sister. Even if she were unclear about KS’s specific wishes about a feeding tube, she could provide the team with some insight into her interests. One of the important roles of an ethicist besides facilitating discussions is to guide surrogate decisionmakers to make treatment decisions regarding what the patient would want based on his or her wishes and values.
In this case, KS appears to have significantly deteriorated over this hospitalization. However, she may still be able to participate, in some way, in the decisions that need to be made. Her declining medical condition, overall poor prognosis, refusals, and preferences should all be taken into consideration by the medical team and her sister, along with every effort to involve her in the process.
