Case 1: Disagreement about Treatment Decision-Making
Nurses are committed to holistic caring and to taking seriously how patients experience their health and illness. This commitment may be tested when patients make decisions that nurses believe are regrettable or imprudent, and that in their view may lead to harming, not helping, the patient.
The promotion of patient choice has gained momentum in recent years. Nurses generally consider this to be progress from former days when paternalism ruled and patients had much lesser voice or input into decisions about and affecting the care they received. As the movement for patient rights gained momentum, however, so too did momentum in nursing for professional and moral autonomy. Nurses are now entering the profession with an undergraduate degree. Many are studying in post-diploma courses. Thanks to their education and professional experience, nurses have the knowledge, skill, and judgment to assess patients and propose treatment. Experienced nurses want their expertise to be recognized. There are times when nurses must stop and think, can I accept this decision? Can I provide the requested care? Can I agree to this refusal of treatment? These questions faced the nurses involved in the care of Julia, a patient with a serious swallowing problem, who contrary to her nurses’ advice insisted on continuing on a diet of solid foods. The issue is further complicated in virtue of her partner’s involvement and views about Julia’s capacity to decide and about what should be done.
Julia, aged 40, is a patient on a stroke unit. A massive stroke that she experienced a month ago was a major blow. She is known to be resilient and strong. For 10 years she had been living independently, in her own home, with multiple sclerosis (MS). Since the stroke she needs help with all her daily activities, including eating meals. Her suffering, she says, has gone “off the Richter scale” because she has lost all independence. She remains mentally alert and communicates clearly. An assessment by a speech pathologist concludes that Julia cannot swallow safely. An aphasic (soft food) diet is ordered. When the meal arrives and the nurse brings the food to her mouth, Julia purses her lips and tells her to stop. Julia is furious and says she will not eat the soft foods. The nurse informs her that if she eats solid foods and drinks clear liquids she will have a higher likelihood of aspirating food. One risk is that she would develop aspiration pneumonia (the result of food travelling to her lungs). Another risk is that she may choke and die when consuming regular food and drinks.
Other nurses attempt to persuade Julia to take the soft food and reinforce what she has been informed about the risks. As they probe her reasons she tells them that food, coffee, and the occasional glass of wine are among the few pleasures she has left in life. To her taste, the soft diet and thickened fluids are unpalatable and she scoffs at the suggestion that the diet “is not that bad” and that eventually patients get used to it. Furthermore, she feels that the soft diet reduces her to feeling like a baby and that she loses her dignity being fed “baby food.” Despite the efforts of the nurses to persuade her, she remains steadfast in insisting on her usual diet. Moreover, she makes it clear that if she aspirates she does not want anyone to try to save her life.
Julia’s partner, Mark, says that she has become unbalanced and is now a different person. Consequently, he believes that her wishes should not be respected. The nurses believe that she does have capacity, but to confirm this they ask for an assessment of Julia’s capacity to decide. The capacity assessors find that she does have capacity to make decisions about nutrition and hydration. Mark rejects it, claiming that he knows his partner “better than complete strangers.”
During this controversy, nurses are worried about helping Julia with her meals. They are concerned that if she aspirates when they are helping her with a regular diet, they will be held responsible for her death. They will only feed her soft foods. Julia goes on a hunger strike. Mark insists that she be force-fed through a feeding tube.
The major ethical issue in this Case is the conflict between Julia’s wishes and preferences, on the one hand, and those of the nurses and of her partner Mark, on the other. If the nurses do as Julia wishes and feed her regular foods, she may aspirate and possibly die. However, if her hunger strike persists, she will certainly die. A secondary issue, upon which the above issue depends, concerns whether Julia has the capacity to decide, about which Mark is in disagreement not just with Julia but also with the capacity assessment and with the nurses.
Patients, families, and nurses may have different views and values about what makes life valuable and worth living. Accepting or refusing food and water may have different emotional and ethical significance for different patients. Julia’s nurses and her partner Mark appear to share the same values and wishes. They want to promote her well-being by reducing her risk of aspirating.
Among nurses and colleagues, decisions about capacity and consent may generate heated debates focused on what patients are able to understand and appreciate. A first step was to decide whether Julia was capable of making this decision. Nurses are sensitive to the possibility that “uncooperative” patients will be labelled irrational or incapable not because of their capacity to reason but because of what they choose. Mark’s position that his partner is not reasoning soundly and is irrational certainly deserves consideration. However, “irrational” is a somewhat vague and plastic term that can be code language to justify overriding a patient’s decision just because the patient does not agree with clinical recommendations. It is necessary to consider the reasons that inform her decision, whether one agrees with the decision or not.
Moreover, nurses no longer consider competency to be global, but instead, decision-specific and time-specific. Patients must be assessed Case by Case to determine whether they have an understanding and appreciation of their situation in relation to specific decisions to be made. In this Case the question was specifically about whether Julia has the capacity to decide about nutrition and hydration. Julia’s main reason for refusing seems to be tied to her views, apparently considered, about what makes life worth living. She knows the moral significance of her decision and that she risks dying sooner rather than later. She knows that aspiration remains a risk even with an aphasia diet, but that the risk is significantly reduced. In sum, she has demonstrated that she understands and appreciates her situation, her options, and the consequences of her decision. In view of the meaning that she attaches to the pleasures in life that she thinks make her life worth living—good meals, coffee, and wine—her decision appears to be authentic and in character. Others may not attach so much significance to these pleasures that they would rather not live than be without them, but it is not “irrational” for Julia to value them to the extent she does, and certainly not an indication that she lacks the capacity to decide. The mental health team, who would have expertise in making such assessments, have confirmed the nurses’ belief that she does have capacity relative to the specific decision. There is no indication that anyone is putting pressure on her to refuse soft foods; to the contrary, the pressure is on her to decide otherwise.
Nurses today are encouraged to practice person- and family-centred care, which considers patients holistically in light of the many dimensions of their lives and, as relational ethics would have it, in the context of their relationships with family and others. This approach to nursing practice is relevant for thinking about the Case of Julia, given the involvement of family and disagreements among the patient, her family member, and nurses. Best practice guidelines published by the RNAO (2015) are a good starting point for analysis along these lines: “Person- and family-centred care,” the RNAO says, “must be based on the development of a true partnership within the therapeutic relationship that recognizes, supports, and values the diversity, distinguishing features, and contributions of all participants (the person, the person’s family, and healthcare providers) and encourages genuine responsive actions and behaviours” (p. 19). One of the challenges in this Case is that one of the “participants,” Mark, is a family member who disagrees with Julia’s decision, and disagrees with the assessment of her capacity. Another challenge is that the nurses also disagree with Julia’s decision.
Capacity to Decide
Let us consider these challenges in turn, beginning with the disagreement between the nurses and Julia. The RNAO document puts a good deal of emphasis on “partnerships” and on “a participatory model of decision making” (p. 31). The relationship between the nurse and the patient is discussed in terms of “sharing decisions on health care,” which “requires a mutual understanding that the person is the expert on themselves and their life situation, and that health-care providers are the experts on evidence-based practices and legislation in health care” (p. 34). This way of putting things has the merit of acknowledging the special skills and knowledge that nurses bring to the relationship by virtue of their education and experience while at the same time acknowledging the patient’s special familiarity with and knowledge of his or her life circumstances. This sounds fine and good, but what happens when the nurse and the patient are in conflict, as they are in this Case? Certainly nurses should make every effort to resolve the conflict through effective communication and provision of relevant information to the patient. In this Case it appears that the nurses have done that. What then?
The idea of “participatory decision-making” and of “shared decisions” can be misleading to the extent it obscures the fundamental moral and legal point, which the document acknowledges and emphasizes, that in the final analysis the decision to accept or refuse treatment in fact is not “shared” but belongs to the patient. “When planning care and services,” the document notes, “healthcare providers should engage with the person in a participatory model of shared decision making, respecting their right to choose the preferred interventions for their health” (p. 31). The crucial point is that, provided the patient has capacity, the patient, and the patient alone, has the right to make the decision, regardless of whether the nurse agrees or not. The role of the nurses is to assist the patient in making the decision that rightfully belongs to the patient. The assistance includes identifying and clarifying options. The nurse shares information with the patient to assist the patient to make a decision; the nurse does not share the decision. Moreover, although the description of patients as “experts on themselves and their life situation” captures something noteworthy about the relationship between the nurse and the patient, the decision in the final analysis belongs to the patient not because he or she is an expert but because he or she is by right entitled to make the decision (and regardless of how “expert” he or she is on his or her life and life situation).
Case 2: Commentary
Let us turn then to Mark’s participation in the decision-making. Here too one needs to be careful about how one interprets keys terms in the RNAO guidelines document, and in particular the expression “patient- and family-centred.” Can there really be two “centres” of care? What if the two centres are not in alignment? If there are indeed two “centres,” the patient and the patient’s family are not equal “participants” in decision-making. Indeed, in the Case of competent patients, family are only participants at all if that is what the patient wishes. In Julia’s Case, her family member, Mark, disagrees with her decision, as do the nurses. However, he needs to understand that the decision is not his to make. To be sure, Mark does not accept the capacity finding. Definitely his views about this should be taken into consideration, especially since in virtue of his relationship with Julia over an extended period of time he would be in a position to notice whether her decision and reasoning were inconsistent with her past behavior. On the other hand, however, one could argue that because he strongly disagrees with Julia’s choice and wants her to be force-fed, his informal assessment of her as “irrational” and lacking capacity is biased in favour of getting the outcome he wants. Regardless, a key point to recognize is that although capacity or competence are words that are used in everyday discourse, in the health care context “capacity” has a specific clinical and legal meaning. How or by what standards capacity is to be assessed is prescribed in law. Mark’s casual assessment, however well informed by past knowledge or however biased, is not on par with the professional and expert assessment of the mental health team. The decision of whether Julia has capacity does not belong to him but rather belongs to the mental health team.
Moreover, even in the Case of patients who lack capacity, when family members are entrusted with decision-making it is still the patient—his or her wishes and/or best interests—that is at the centre. If Julia were found to lack capacity, Mark would become the substitute decision-maker. This is an unenviable and onerous responsibility. His first duty would be to respect Julia’s wishes and values as expressed when capable. If she had not done so, he would be bound to decide based on her best interests.
Deciding what someone’s best interests are is not black and white. It is unclear whether Julia’s best interests would be improved by force-feeding her. There could still be risks, albeit lesser, if she were force-fed by a feeding tube. Moreover, if treatment were initiated and she tried to remove the tube, chemical or physical restraints could be necessary to stop her from doing so. Leaving aside the humiliation, new risks would be associated with the use of restraints, such as pressure ulcers. To be sure, she would not be starving, and in this respect her condition would improve. However, best interest is about more than sustenance and physical well-being. Would the expected benefits of having a feeding tube outweigh these risks of harm to Julia?
In Julia’s Case, however, the fact is that she has been found to have the capacity to decide. If the nurses feed her regular food as she wishes, there is a good chance she will aspirate. The nurses would not be responsible for this outcome because they would be respecting her informed and freely made decision. Nonetheless, the situation would be distressing for them, and they could experience moral distress for the part they played in providing a form of care with which they strongly disagreed. The situation is bound to be stressful for all concerned: for Julia, for Mark, and for the nurses.
1.Dining and food are associated with family, cultural, and religious values and can have symbolic meaning beyond mere sustenance. Julia appears to believe that her life would not be worth living without coffee, wine, and good food. Her partner believes that her decision to choose a high-risk diet over a much safer soft diet is irrational and proves that she lacks the capacity to decide. Do you agree with him that the decision by itself is sufficient evidence that she lacks capacity to make treatment decisions?
2.Nurses are taught that family-focused care is important. They are also taught that patients have the right to make their own decisions and not be coerced by family, friends, or caregivers. Discuss the ethical tension or conflict between these two things.
3.Can both the patient and the family be at the “centre” of nursing care? How would you apportion or distinguish the respective rights and responsibilities of patients, their families, and nurses in “shared decision-making.”
4.Discuss the experience of stress or distress that can arise when nurses participate in a plan of care freely chosen by a patient but to which they are strongly opposed. How should nurses and employers manage such stress or distress?
5.Suppose that Julia goes on a hunger strike. After a week, she says she wants to die and asks for medical aid in dying. She is assessed and does not qualify. Julia decides to go home to continue not eating or drinking. Should she be permitted to go home?