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.