Discussion
The present case shows the difficulty that health care providers experience in serving as advocates for their patients in the absence of robust legal backing.
In the United States, the Patient Self-Determination Act was enacted in 1991. Early discussions about ACP have shown to enhance care that is consistent with the patient’s goal, leading to positive family outcome.4 Advance Directive, developed based on the results of discussions, have legal force.5 In Europe, legislation on patient self-determination has led to active discussions and increases satisfaction with care.6 Euthanasia legislation in the Netherlands guarantees patients’ rights, considering the importance of the discussion. It also recognizes the right of the physician to refuse to be involved when patients request euthanasia. In Canada, MAiD(Medical Assistance in Dying) has been legislated, which has led to more discussion about self-determination.7However, self-determination is only recommended in the medical guidelines and there is no legal framework in Japan. In order to implement ACP, clear communication is essential, especially in home care. Regular patient visits provide more opportunities and time to talk to patients and their families, making it easier to advance ACP. In such a situation, having a legal ground for ACP may facilitate the discussion of respecting patients’ rights, particularly in the context of Japan.
Many Japanese follow a cultural virtue of practicing “relationship-conscious self-decisions” because they prioritize family harmony and the result of which they want to align their personal decision with the will of the family or group to which they belong. Therefore, even if the patient’s intentions differ from those of the family, the patient may try to harmonize by suppressing his or her own opinions. Also, as the patient becomes weaker and unable to share his/her opinion, family are more likely to make such decisions. In fact, most decision-makings in the dying stage are made between the physician and the family, and family-centered decision-making is widely practiced.8 In such cultural background, even if medical staff attempt to protect the patient’s decision, it may cause conflicts between the patient and the family. In such conflicting situations, medical staff tend to proceed according to the wishes of the family to avoid trouble with the family members. This is one of the factors that can make it difficult to proceed with ACP in the Japanese contexts. In our case study, although the patient’s desire was understood and was shared among the family and the medical staff, his cognitive function and ADL gradually declined and the family member opted for care according to their wish. The medical staff was also left with no choice but to follow the procedure according to the desire of family members. In general, it has been reported that the participation of caregivers in ACP promotes family acceptance regarding changing patient’s condition and respect for patient’s wishes, thereby facilitating end-of-life care at home.910 In Japan, it has been also reported that discussion of care goals between the doctor and the family can reduce conflicts in decision making.11 However, in the present case, although the caregivers discussed the issue, they were not able to participate in ACP, and it was difficult to make policy decisions in accordance with the patient’s wishes. Given the cultural background of Japan, where it is difficult to follow/implement a patient’s wishes, it is important to have a legal basis for the discussion so as not to deviate from the patient’s wishes. On the other hand, there are some points that do not fit into the Japanese culture regarding the establishment of a legal basis for ACP. While some patients rely heavily on the opinions of their families, some patients leave all decisions to family members, even if they are competent to make their own decision. As a result, the patient may end up not understanding what is happening to them. In addition, there are cases where the patient and the family are unable to harmonize, resulting in a breakdown of the relationship and difficulty in decision making. However, it has been reported that decision-making conflicts are reduced when the surrogate decision-maker is aware of the patient’s preferences,1213 and when the family fully understands the patient’s wishes, the stress of decision-making can be reduced by achieving harmony. In such a cultural background, if the ACP has a legal basis and patients are half-heartedly encouraged to make decisions on his or her own, it will be difficult to agree with the whole process, which may result in high stress. In some cases, leaving decision-making to the family rather than the patient may increase the patient’s satisfaction, and over-emphasizing the patient’s self-determination can result in a loss of direction. Therefore, careful judgment and evaluation should be done before proceeding with any decision.
It has been suggested that cooperation of ACP between patients and their families may improve decision-making conflicts,14 and it would be meaningful for patients and their families to actively promote ACP in-home care. However, it would be difficult to implement effective ACP because patients’ rights can easily become ambiguous in collective cultures such as Japan. Although legal guarantees such as the Dutch Euthanasia Act and Maid of Canada may not always work. However, a legal rationale that guarantees the rights of both patients and providers in ACP and respects the goals and values of the patient15 may contribute to promoting discussion of respect for the wishes of the patient in a collective culture that tends to favor the wishes of the family. Moreover, if this is deemed difficult due to various political barriers, it may be necessary to consider how to promote patient-based ACP while being aware of the lack of such barriers.