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\begin{document}

\title{End-of-life home care during the COVID-19 pandemic}



\author[1]{Ryo Sakamoto}%
\author[2]{Divya Bhandari}%
\author[3]{Akihiko Ozaki}%
\author[4]{Hirotomo Miyatake}%
\author[2]{Makoto Kosaka}%
\author[5]{Makoto Yoshida}%
\author[2]{Tetsuya Tanimoto}%
\author[2]{Masahiro Kami}%
\affil[1]{Visina Home care}%
\affil[2]{Medical Governance Research Institute}%
\affil[3]{Joban Byoin}%
\affil[4]{Orange Home-Care Clinic}%
\affil[5]{Teikyo Daigaku}%


\vspace{-1em}



  
  \date{June 16, 2024}


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\selectlanguage{english}
\begin{abstract}
Patients and their families are discouraged from the restrictions on
hospital visits for coronavirus Infection control. This separation might
further deteriorate the mental health of both vulnerable patients and
their family members. Home care could be a preferable solution to this
problem.%
\end{abstract}%



\sloppy


\textbf{Title:} End-of-life home care during the COVID-19 pandemic

\textbf{Co-authors:}

1. Ryo Sakamoto

Departments:

Institutions: Visina Home Care

City: Tokyo

Country: Japan

Email:\emph{ryo.sakamoto1227@gmail.com}

2. Divya Bhandari

Departments:

Institutions: Medical Governance Research Institute

City: Tokyo

Country: Japan

Email: \emph{rayordeal3@gmail.com}

3. Akihiko Ozaki

Departments: Department of Breast Surgery

Institutions: Jyoban Hospital of Tokiwa Foundation

City: Fukushima

Country: Japan

Email:\emph{ozakiakihiko@gmail.com}

4. Hirotomo Miyatake

Departments:

Institutions: Orange Home-Care Clinic

City: Fukui

Country: Japan

Email:\emph{hmiyatake@orangeclinic.jp}

5. Makoto Kosaka

Departments:

Institutions: Medical Governance Research Institute

City: Tokyo

Country: Japan

Email:\emph{m.kosaka0811@gmail.com}

6. Makoto Yoshida

Departments:

Institutions: Medical Governance Research Institute

City: Tokyo

Country: Japan

Email:\emph{110818makoto@gmail.com}

7. Tetsuya Tanimoto

Departments:

Institutions: Medical Governance Research Institute

City: Tokyo

Country: Japan

Email: \emph{tetanimot@yahoo.co.jp}

8. Masahiro Kami

Departments:

Institutions: Medical Governance Research Institute

City: Tokyo

Country: Japan

Email: \emph{kami-tky@umin.net}

\textbf{Corresponding author:}

Ryo Sakamoto

Postal address: Minatoku, Tokyo, Japan

Email: ryo.sakamoto1227@gmail.com

Tel: +81 9082761399

Fax: 03-6409-6358

DATA AVAILABILITY STATEMENT

Data sharing is not applicable to this article as no datasets

were generated or analyzed during current study.

\textbf{Funding Statement:}

None.

\textbf{Conflict of interest disclosure:}

AO reports personal fees from Medical Network Systems, MNES Inc. TT
reports

personal fees from Medical Network Systems, MNES Inc. and Bionics co.
Itd. Other

authors declare no competing interests.

\textbf{Ethics approval statement:}

Written informed consent was obtained from the patient's child.

\textbf{Patient consent statement:}

The patient is deceased and we obtained a consent form from the
patient's child.

\textbf{Permission to reproduce material from other sources:}

Not applicable.

\textbf{Clinical trial registration:}

Not applicable.

\textbf{Abstract:}

Patients and their families are discouraged from the restrictions on
hospital visits for coronavirus Infection control. This separation might
further deteriorate the mental health of both vulnerable patients and
their family members. Home care could be a preferable solution to this
problem.

\textbf{Clinical message:}

The findings of this case study highlight that in crises situation such
as COVID-19, home care could be considered as a viable option for
terminally ill cancer patients.

\textbf{Introduction}

End-of-life care for cancer patients is imperative as it aims to
optimize the quality of life by alleviating physical, social, spiritual,
and psychological suffering experienced throughout the dying process.
Proper interaction/communication between terminally ill patients and
their family members is particularly crucial because it enables a
patient to adjust to the process with ease and family members to move on
after death with mitigated regret (1). Such provisions have been made
available and are promoted in hospices and palliative care wards.

However, the current coronavirus disease 2019 (COVID-19) pandemic has
affected various aspects of healthcare, and end-of-life care is no
exception. In an attempt to prevent the spread of COVID-19 infection,
patients' families are discouraged from visiting hospitals and nursing
homes. This separation might further deteriorate the mental health of
both vulnerable patients and their family members (2). That being said,
providing effective end-of-life care in medical institutions amid the
pandemic to cancer patients who are highly susceptible to the infection
itself has been a major challenge worldwide.

Alternatively, home care could be a preferable solution to this problem.
Home care is a form of medical care in which patients stay at home with
the help of their families and medical professionals. This form of care
is actively practiced in some countries, including Japan, where
reimbursement for home care is available, including for cancer patients.
In Japan, the first infection of COVID-19 was noted in January 2020, and
a state of emergency was subsequently declared from April 2020 to May
2020. Since then, the infection has not been well controlled yet. Until
now, many medical institutions have implemented restrictions on
hospitalized patients.

In this article, we present a case study of a Japanese patient who spent
the final stages of his illness at home using home care during the
COVID-19 pandemic.

\textbf{Case presentation}

A man in his late 80s living in Tokyo with his wife and two daughters
experienced sudden abdominal pain in July 2020 and went to seek help in
a nearby tertiary hospital. That same day, he had to undergo an
emergency laparotomy and appendicectomy after being diagnosed with
generalized peritonitis associated with perforation of appendiceal
cancer. Once the diagnostic tests were conducted, the patient was
confirmed to have Stage IV appendiceal cancer. Postoperative
contrast-enhanced CT scan showed no abnormal findings such as local
recurrence, lymphadenopathy, or distant metastasis associated with
cancer, but histopathological tests showed scattered lymphatic invasion
in the sub-serous layer.

Family members were informed about the severity of the disease
highlighting the need for palliative care. However, due to restrictions
imposed by the hospital amid COVID-19, the family members were not
allowed to visit frequently with the patients. Accordingly, they started
seeking updates on the patient's condition through phone calls with the
medical staff. However, as family members were unable to understand all
situations/information clearly, there were few instances of
misunderstanding and even conflict between medical staffs and family
members. For example, there was an incident where the family members
thought that the intravenous drip was administered through the
peripheral intravenous catheter, but later they found it was
administered through the peripherally inserted central venous catheter.
This kind of incident was troublesome for family members, and they were
particularly concerned when medical staff asked them not to call too
often and told that medical staff would contact them directly if
anything happens to the patients.

Considering the patient's desire to spend his final period at home with
his family and the restrictions on hospital visits due to pandemic, the
patient and his family chose to receive home care in November 2020.
After his discharge, home-care nurses visited twice a day and the home
doctor visited once every two weeks. This allowed the family to spend
enough time with the patient, which was not possible in the hospital due
to the restriction. Two daughters assisted his wife as family
caregivers, and professional caregivers provided physical care through
public nursing care insurance scheme. On weekends, his grandchildren and
great-grandchildren also visited him, and the whole family was able to
spend quality time with the terminally ill patient. Moreover,
communication between the medical staff and the family was also enhanced
as nurses used to communicate on a daily basis, and the doctor in charge
used to make house calls as needed. Finally, in April 2021, the patient
passed away peacefully after experiencing \emph{acute respiratory
distress syndrome (ARDS)} caused by heart failure.

\textbf{Discussion}

This case illustrates that home care can be a viable option in
end-of-life care for cancer patients, particularly during crises such as
the recent COVID-19 pandemic. Globally, a standard set of end-of-life
care is a hospice or palliative care ward which aimed to provide
holistic care to patients. While focusing on personalized care of
patients, hospice also seeks to ameliorate the tolls and hardship faced
by the family caregivers while taking care of their patients (3). In
contrast, this case demonstrated that home care would allow terminally
ill patients to stay where they feel most comfortable so that they could
cherish their lifetime memories and spend quality time with their loved
ones.

We believe that there are several other reasons to choose for home care
for end-of-life care during a COVID-19 pandemic. First, this would
alleviate communication problems between health care professionals and
family members. Restriction imposed due to COVID-19 has been reported to
reduce the quality of communication between hospitalized patients and
their family members, resulting in severe distress that may affect the
quality of death and bereavement (4, 5). Second, home care would
potentially ease the burden relating to COVID-19 care among medical
professionals in hospitals. End-of-life patients are considered a
vulnerable population and infection with SARS-CoV2 can result in the
development of serious illness. In addition to the risk of nosocomial
infection, work overload of these staff and logistic shortage are also
an issue. Given these reasons, home care could be considered as a viable
option at least for a while until the pandemic subsides.

However, home care also has its drawbacks. Health workers are not easily
available and it is more difficult to address patient's health problems
in a timely manner compared to hospitalization. Further, there might be
a risk of COVID-19 infection due to frequent visits from health workers,
families, and relatives. In any case, patients must be informed about
the advantages and disadvantages of both hospice and home care so that
they can make their own choices autonomously.

\textbf{Conclusion}

The findings of this case study highlight that in crises situation such
as COVID-19, home care could be considered as a viable option for
terminally ill cancer patients.

\textbf{Author Contributions:}

All authors conceptualized and designed the study. Sakamoto R, Bhandari
D, Ozaki A and Tanimoto T wrote the manuscript, and all authors
contributed to making critical revisions for improving the intellectual
content of the manuscript.

Acknowledgments:

None.

\textbf{References:}

1. Boyle DK, Miller PA, Forbes-Thompson SA. Communication and
end-of-life care in the intensive care unit: patient, family, and
clinician outcomes. Crit Care Nurs Q. 2005;28(4):302-16.

2. Rosenstein DL. Depression and end-of-life care for patients with
cancer. Dialogues Clin Neurosci. 2011;13(1):101-8.

3. Kris AE, Cherlin EJ, Prigerson H, Carlson MD, Johnson-Hurzeler R,
Kasl SV, et al. Length of hospice enrollment and subsequent depression
in family caregivers: 13-month follow-up study. Am J Geriatr Psychiatry.
2006;14(3):264-9.

4. Feder S, Smith D, Griffin H, Shreve ST, Kinder D, Kutney-Lee A, et
al. ''Why Couldn't I Go in To See Him?'' Bereaved Families' Perceptions
of End-of-Life Communication During COVID-19. J Am Geriatr Soc.
2021;69(3):587-92.

5. Otani H, Yoshida S, Morita T, Aoyama M, Kizawa Y, Shima Y, et al.
Meaningful Communication Before Death, but Not Present at the Time of
Death Itself, Is Associated With Better Outcomes on Measures of
Depression and Complicated Grief Among Bereaved Family Members of Cancer
Patients. J Pain Symptom Manage. 2017;54(3):273-9.

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