This study has the following limitations aside from
the relatively small sample size and the possibly higher
response rate from nursing homes which were more active
in providing EOL care. First, the preferences of the resident
and the family are those reported by the nursing home staff
who could be justifying the decisions that they had made.
Methodologically, it would have been better if responses
were obtained directly from the deceased resident’s family.
In fact, following our study protocol, the nursing home
staff did send questionnaires to families. But we decided
not to report the results because of the selection bias:
responses were obtained from only one quarter of the residents
who had been discharged due to death. This low rate
was primarily due to the fact that the staff did not send
the questionnaire because they thought the family would
not be able to respond. Parenthetically, we would not have
been able to send the questionnaire directly to the family
because researchers are prohibited from accessing death
certificate data in Japan.
Second, the staff would have less knowledge of the
extent of LST delivered in hospitals in comparison with
that delivered in their own facility. Thus, the proportion
of preferences on LST not being adhered among those who
had died in hospitals should not be given the same weight
as those who had died in nursing homes. Third, no information
is available on how preferences may have changed
after the resident had been admitted to the nursing home.
However, a longitudinal analysis that would cover the time
from the resident’s admission till death would be difficult,
given the fact that the average length of stay is 4 years.
Lastly, the quality of EOL care in nursing homes care has
yet to be evaluated. The appropriateness of the standards
that must be met to become a designated EOL care facility
and bill for the EOL care bonus, the extent to which the
conditions are adhered in practice and their impact on the
quality should be the basis for evaluating the success of the
government’s policy to promote EOL care in nursing homes
in the future.