\documentclass[10pt]{article}

\usepackage{fullpage}
\usepackage{setspace}
\usepackage{parskip}
\usepackage{titlesec}
\usepackage[section]{placeins}
\usepackage{xcolor}
\usepackage{breakcites}
\usepackage{lineno}
\usepackage{hyphenat}





\PassOptionsToPackage{hyphens}{url}
\usepackage[colorlinks = true,
            linkcolor = blue,
            urlcolor  = blue,
            citecolor = blue,
            anchorcolor = blue]{hyperref}
\usepackage{etoolbox}
\makeatletter
\patchcmd\@combinedblfloats{\box\@outputbox}{\unvbox\@outputbox}{}{%
  \errmessage{\noexpand\@combinedblfloats could not be patched}%
}%
\makeatother


\usepackage{natbib}




\renewenvironment{abstract}
  {{\bfseries\noindent{\abstractname}\par\nobreak}\footnotesize}
  {\bigskip}

\titlespacing{\section}{0pt}{*3}{*1}
\titlespacing{\subsection}{0pt}{*2}{*0.5}
\titlespacing{\subsubsection}{0pt}{*1.5}{0pt}


\usepackage{authblk}


\usepackage{graphicx}
\usepackage[space]{grffile}
\usepackage{latexsym}
\usepackage{textcomp}
\usepackage{longtable}
\usepackage{tabulary}
\usepackage{booktabs,array,multirow}
\usepackage{amsfonts,amsmath,amssymb}
\providecommand\citet{\cite}
\providecommand\citep{\cite}
\providecommand\citealt{\cite}
% You can conditionalize code for latexml or normal latex using this.
\newif\iflatexml\latexmlfalse
\providecommand{\tightlist}{\setlength{\itemsep}{0pt}\setlength{\parskip}{0pt}}%

\AtBeginDocument{\DeclareGraphicsExtensions{.pdf,.PDF,.eps,.EPS,.png,.PNG,.tif,.TIF,.jpg,.JPG,.jpeg,.JPEG}}

\usepackage[utf8]{inputenc}
\usepackage[english]{babel}



\usepackage{float}








\begin{document}

\title{A case report on the legal assurance of ACP in collective culture}



\author[1]{Hirotomo Miyatake}%
\author[2]{Akihiko Ozaki}%
\author[3]{Yasuhiro Kotera}%
\author[4]{Ryo Sakamoto}%
\author[5]{Divya Bhandari}%
\author[6]{Yu Uneno}%
\author[1]{Hiroyuki Beniya}%
\affil[1]{Orange Home-Care Clinic}%
\affil[2]{Joban Hospital}%
\affil[3]{University of Derby}%
\affil[4]{Visina Home care}%
\affil[5]{Medical Governance Research Institute}%
\affil[6]{Kyoto University Graduate School of Medicine Faculty of Medicine}%


\vspace{-1em}



  
  \date{May 20, 2024}


\begingroup
\let\center\flushleft
\let\endcenter\endflushleft
\maketitle
\endgroup





\selectlanguage{english}
\begin{abstract}
This case report presents one important aspect of promoting ACP in
Japanese culture, which is different from Western cultures. The report
suggests the possibility that legal support contributes to the promotion
of ACP, while considering differences in cultural contexts.%
\end{abstract}%



\sloppy


\textbf{A case report on the legal assurance of ACP in collective
culture}

Hirotomo Miyatake\textsuperscript{1}, MD; Akihiko
Ozaki\textsuperscript{2}, MD, PhD; Yasuhiro Kotera\textsuperscript{3},
PhD; Ryo Sakamoto\textsuperscript{4}, Divya Bhandari\textsuperscript{5},
Yu Uneno\textsuperscript{6}, MD; Hiroyuki Beniya\textsuperscript{1}, MD.

\textsuperscript{1}Orange Home-Care Clinic, Fukui, Japan

\textsuperscript{2}Department of Breast Surgery, Jyoban Hospital of
Tokiwa Foundation, Iwaki, Japan

\textsuperscript{3}College of Health, Psychology and Social Care,
University of Derby, Derby, United Kingdom

\textsuperscript{4}Visina Home care, Tokyo, Japan

\textsuperscript{5}Medical Governance Research Institute, Tokyo, Japan

\textsuperscript{6}Department of Therapeutic Oncology, Graduate School
of Medicine, Kyoto University, Kyoto, Japan

\textbf{*Corresponding author:}

Hirotomo Miyatake, M.D.

Orange Home-Care Clinic, Fukui City, Fukui 910-0018, Japan

Phone: +81-776-21-3333, Fax: +81-776-21-3353

E-mail: hmiyatake@orangeclinic.jp

\textbf{Abstract}

This case report presents one important aspect of promoting ACP in
Japanese culture, which is different from Western cultures. The report
suggests the possibility that legal support contributes to the promotion
of ACP, while considering differences in cultural contexts.

\textbf{Key Clinical Message}

Legal support for ACP may be important to promote the practice of ACP in
Japan. Legal support does not necessarily mean that ACP will always
yield positive outcomes, however it can support preserving the
foundation of ACP, respecting the individual's wish in
relationship-conscious decision-making culture.

Key words: home care, ACP, culture, legal assurance

Word Count: 2161 words

\textbf{Introduction}

With the surge in a number of the aging population globally, the
importance of prevention and appropriate management of chronic diseases
is increasing. As a result, choices of treatments are becoming more
complex and difficult for patients to understand. Moreover, supporting
patients in making various decisions, including treatments choices, is
challenging particularly, during their end-of-life decision as it
involves various ethical issues.

In recent years, Advance Care Planning (ACP) has become a popular choice
as it enables patients and their families to make a timely decision
about future treatment options. In the 1960s, there was a wave of
criticism of medical paternalism in the United States and movements to
clarify living wills and to make Advance Directive (AD). Accordingly, in
1991, the Patient Self-Determination Act was enacted in the United
States, requiring hospitals to provide information about AD and to
inform patients that they had the right to receive or refuse treatment.
Although AD was considered suitable for implementing patient intentions,
change in the patient's decision over time caused problems in executing
such fluctuating and unclear AD records. Therefore, the ACP that
emphasizes reaching conclusions rather than merely recording them, was
advocated. Recent studies have shown that ACP improves the quality of
end-of-life care and satisfaction of patients and families, reduces
stress, anxiety, depression in bereaved families\textsuperscript{1}, and
decreases the frequency of hospitalizations\textsuperscript{2},
highlighting its efficiency and effectiveness in supporting patients
decision.

In Japan, studies on the decision-making process for medical treatment
and care in the end-of-life had been conducted since 1987, and the
incident of a ventilator removal for euthanasia in the Imizu municipal
hospital in 2006 led to rapid progress on the decision-making for
medical treatment and care in the end-of-life in recent years.
``Guideline for the Decision-Making Process for Terminal Care'' was
formulated in 2007, and it was revised as ``Guideline for the
Decision-Making Process for Medical treatment in the end-of-life'' in
2018. In this revision, the importance of ACP approach was further
emphasized as ``individual's wishes can change in accordance with
changes in physical and psychological conditions, policy of medical
treatment and care, and his/her desire to live, etc., which need to be
discussed on a daily basis.'' \textsuperscript{3} Furthermore, the
Ministry of Health, Labor and Welfare (MHLW) commissioned the ''Project
for Improving the Medical System in the End-of-life, and Education for
Implementing End-of-Life Discussion'' (E-FIELD), which is an educational
project for medical professionals to promote ACP, has been conducted
nationwide to further promote and implement ACP in the medical
field\textsuperscript{3}. However, ACP was originally developed in the
United States and Europe with proper legal support. Implementing ACP in
Japan without such legal backing can create multiple issues that need to
be explored. We are presenting a case study that demonstrates that the
lack of strict legal guidance can cause a problem for the medical team
to follow the patient's desire at the end-of-life care.

\textbf{Case}

A patient aged 97-year-old man living with his eldest daughter and her
family used to regularly visit a general hospital for hypertension and
chronic kidney disease. In January 2016, he developed urinary
incontinence, frequent urination, and constipation, which he had never
experienced before, and visited the emergency department of the general
hospital. He was treated with sennoside tablet 12mg for constipation,
however, his symptoms did not ease until three days after administrating
medicine. So, at the request of his elder daughter, the attending
physician visited the patient and prescribed two tablets of magnesium
oxide 330mg in morning and evening to control defecation. While patients
experienced relief from constipation and urinary incontinence, his
urinary frequency was even prolonged. As blood test showed a high
prostate specific antigen (PSA) level of 139.0 ng/mL, the patient and
his eldest daughter were informed about the possibility of prostate
cancer. Considering the patient's age, he and his eldest daughter denied
to undergo a thorough examination and choose to monitor the patient's
condition with regular blood tests. In addition, the patient began using
home care nursing facilities to follow up with his families and to
prevent his Activities of Daily Living (ADL) from deteriorating.

With the help of his eldest daughter, he started keeping records of his
urination frequency and defecation status and managed to take care of
his health. He used to express gratitude to his eldest daughter who was
his primary caregiver. However, sometimes he expressed a rather entitled
attitude, commenting ``it is expected for children to take care of their
parents''. Furthermore, he denied using day-care or short stay services,
despite multiple recommendations from his daughter, doctors, and support
specialists. His ADL began to decline prominently, and the frequency of
urinary incontinence was increased. As the daughter was forced to deal
with the patient's urination, she was tried over time and had difficulty
accepting changes in her father's condition caused by senility. In
January 2019, we received an emergency call explaining that the patient
suddenly experienced strong back pain and was unconscious. When the
doctor visited the patient's residence, he regained his conscious back.
The patient and family members were explained about the possibility of a
sudden change in his condition, but the patient assured the doctor that
there was no need for him to go to the hospital. Although the family
wanted to fulfill the patient's desire, they were worried about
continuing the medical treatment at home and were particularly concerned
about managing such emergencies.

His daughter felt strongly that she needed to care for him, which made
it difficult for her to balance household chores and caregiving. So,
with approval from the patient, they started using day-care and
short-stay services from February 2019. There were some instances where
the daughter also had difficulty accepting the fact that her father was
aging with cognitive and physical decline, so she ended up reprimanding
him for his behavior. Furthermore, she was worried as he refused to get
admission to the hospital even in the emergency. To come up with the
best possible solution, the home care team, which consisted of medical
staff and care managers, discussed with the patient and his family about
his future medical treatment plan. However, as the patient was adamant
about his desire to continue home treatment, it was difficult to come up
with a final solution that could address the desire of patient and at
the same time reduce the burden of care on his family.

In June 2020, we received an emergency call with the complaint of a
fever of 37.8 and increase of sputum production after sobbing at
breakfast. At the time of the visit, his physical examination were
temperature 38.2, blood pressure 162/93 mmHg, pulse 90 /min, a
saturation of percutaneous oxygen 89\% at room air, respiration rate 26
/min and also the presence of lung murmur. So, aspiration pneumonia was
suspected. If physicians had to follow the patient's wishes at that
stage, medical staff would have considered introducing home oxygen and
daily antibiotic infusion by home care nurses to treat him at home.
However, considering the family's mental state and their inability to
care for a patient at home, physicians made a comprehensive judgment to
take the patient to the hospital for emergency care. After that, he was
transferred to a recovery hospital for rehabilitation. About a month
later, the family informed that he had been admitted to a nursing home
affiliated with the hospital and there was no further need for a home
visit.

\textbf{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.\textsuperscript{4} Advance Directive, developed based on the
results of discussions, have legal force.\textsuperscript{5} In Europe,
legislation on patient self-determination has led to active discussions
and increases satisfaction with care.\textsuperscript{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.\textsuperscript{7}However, 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.\textsuperscript{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.\textsuperscript{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.\textsuperscript{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,\textsuperscript{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,\textsuperscript{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
patient\textsuperscript{15} 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.

\textbf{Acknowledgements}

The authors express their sincere gratitude to all the staff members
involved in this case.

\textbf{Conflict of interest statement}

Dr. Ozaki received a personal fee from MNES INC. outside of the
submitted work.

\textbf{Funding~statement}

This study did not receive any funding.

\textbf{Ethical approval}

This research meets the ethical guidelines and adheres to Japan's local
legal requirements. An ethical review is not required for this type of
article.

\textbf{Consent of publication}

Written, informed consent was obtained from the patient's family for
publication of this case report and any accompanying images.

\textbf{Author contributions}

HM, and AO: wrote the initial draft of the manuscript.~HM, AO, YK, RS,
DB, YU and HB: assisted in the preparation of the manuscript. HM is the
lead author and responsible for submission. All authors critically
reviewed and revised the manuscript. HM and HB had full access to the
data, and controlled the decision to publish, and accept full
responsibility for the work.

Reference

1. Jeong S, Barrett T, Ohr SO, et al. Study protocol to investigate the
efficacy of normalisation of Advance Care Planning (ACP) for people with
chronic diseases in acute and community settings: a quasi-experimental
design. \emph{BMC Health Serv Res.} 2019;19(1):286.

2. Brinkman-Stoppelenburg A, Rietjens JA, van der Heide A. The effects
of advance care planning on end-of-life care: a systematic
review.\emph{Palliat Med.} 2014;28(8):1000-1025.

3. Cheng S-Y, Lin C-P, Chan HY-l, et al. Advance care planning in Asian
culture. \emph{Japanese Journal of Clinical
Oncology.}2020;50(9):976-989.

4. Bernacki RE, Block SD. Communication about serious illness care
goals: a review and synthesis of best practices. \emph{JAMA Intern
Med.}2014;174(12):1994-2003.

5. Vearrier L. Failure of the Current Advance Care Planning Paradigm:
Advocating for a Communications-Based Approach. \emph{HEC
Forum.}2016;28(4):339-354.

6. Ten Koppel M, Pasman HRW, van der Steen JT, et al. Consensus on
treatment for residents in long-term care facilities: perspectives from
relatives and care staff in the PACE cross-sectional study in 6 European
countries. \emph{BMC Palliat Care.} 2019;18(1):73.

7. Patel T, Christy K, Grierson L, et al. Clinician responses to legal
requests for hastened death: a systematic review and meta-synthesis of
qualitative research. \emph{BMJ Support Palliat Care.} 2021;11(1):59-67.

8. Kanoh A, Kizawa Y, Tsuneto S, Yokoya S. End-of-Life Care and
Discussions in Japanese Geriatric Health Service Facilities: A
Nationwide Survey of Managing Directors' Viewpoints. \emph{Am J Hosp
Palliat Care.} 2018;35(1):83-91.

9. Abadir PM, Finucane TE, McNabney MK. When doctors and daughters
disagree: twenty-two days and two blinks of an eye. \emph{J Am Geriatr
Soc.} 2011;59(12):2337-2340.

10. Ratner E, Norlander L, McSteen K. Death at home following a targeted
advance-care planning process at home: the kitchen table
discussion.\emph{J Am Geriatr Soc.} 2001;49(6):778-781.

11. Tsuda S, Nakamura M, Miyachi J, et al. Decisional Conflict in Home
Medical Care in a Family-Oriented Society: Family Members' Perspectives
on Surrogate Decision Making from a Multicenter Cohort Study. \emph{J
Palliat Med.} 2019;22(7):814-822.

12. Vig EK, Starks H, Taylor JS, Hopley EK, Fryer-Edwards K. Surviving
surrogate decision-making: what helps and hampers the experience of
making medical decisions for others. \emph{J Gen Intern
Med.}2007;22(9):1274-1279.

13. Braun UK, Beyth RJ, Ford ME, McCullough LB. Voices of African
American, Caucasian, and Hispanic surrogates on the burdens of
end-of-life decision making. \emph{J Gen Intern Med.}2008;23(3):267-274.

14. Tay DL, Ellington L, Towsley GL, Supiano K, Berg CA. Evaluation of a
Collaborative Advance Care Planning Intervention among Older Adult Home
Health Patients and Their Caregivers. \emph{J Palliat
Med.}2020;23(9):1214-1222.

15. Hooper S, Sabatino CP, Sudore RL. Improving Medical-Legal Advance
Care Planning. \emph{J Pain Symptom Manage.} 2020;60(2):487-494.

\selectlanguage{english}
\FloatBarrier
\end{document}

