Kawaguchi, Yumiko & Konagaya, Momoe (eds.)
August 10, 2009 "Pocket Guide of Using Ventilators at Home: Life and
Support", Ishiyaku Shuppan, 212p ISBN-10:4263235290,
ISBN-13:9784263235294, \2,730 (with tax) [amazon] /
[kinokuniya] * v03
[Contents]
This is the handbook to provide care using ventilators, written from the viewpoints of patients living with a ventilator and the family who are taking care of them. Using ample pictures and illustrations, the book explains how to take care of the artificial ventilators and the patients who are using them at home, how to assess them, and how to use it safely and comfortably.
(From the Publisher's Website : http://www.ishiyaku.co.jp/search/details.cfm?bookcode=2352
90)
[Table of Contents]
Part1
Basics
Chapter 1 Life With Ventilators (Kawaguchi, Yumiko)
- Variety of
Patients Using Ventilators
- The Present Situation of Home Care
Using Ventilators
- Patients of Incurable Diseases Using
Ventilators
Chapter 2 The Mechanism of Ventilation and
Artificial Ventilators
1. Ventilation in Your Living (Konagaya,
Momoe)
- Mechanism of Ventilation Movement
- The Flow of
Oxygen
- Normalizing the Respiratory Tract
2. Mechanism of
Artificial Ventilators (Omori, Takeshi)
- Artificial Ventilators
Used at Home
- Heater and Humidifier
- Respiration
Circuit
- Other Cautions
- How to Live Using Ventilators
Without Stress
Chapter 3 Noninvasive Respiration
Management (Nakayama, Yuki)
- Respiration Difficulties Caused by
Neuromuscular Disorder like ALS
- Incomplete Ventilation Caused
by the Weakened Respiration Muscles
- Difficulties of Cleaning
Respiratory Tract Because of Weakened Coughing Function
-
Aspiration and Airflow Obstruction Caused by Bulbar
Paralysis
Chapter 4 TMV: Tracheostomy Mechanical
Ventilation (Yamamoto, Makoto)
1.
Basic Management of Caring ALS Patients at Home Using
Ventilators
- Transitional Phase from NIV to TMV
- Starting
TMV
- Transition of TMV to Volume-Limited Ventilator
2.
Complications and Risk Management
- Complications
- Risk
Management
Chapter 5 Preventing Infection in Home Care
(Okada, Shinobu)
- Standard Precautions and Prevention for Each
Possible Infectious Route
- Washing Hands, Using Protective
Tools
- Some Cautions in Daily Life
- Difference between Care
in Hospital and Care at Home
Chapter 6 Suction and
Nutrition Care for Patients Using Ventilator (Konagaya, Momoe)
-
Suction of Sputum
- Nutrition Input through Gastrostomy
Tubes
Part 2 Applications
Chapter 7
The Situation of Home Care Using Ventilators (Kawaguchi, Yumiko)
- Medical Care and
its Ideas
- Basic Care and Points to Check
- Taking Advantage
of Systems
Chapter 8 Roles and Cooperations of Various
Specialists
1. Cooperation When Leaving Hospital (Okada, Naoko)
- How to Establish the Cooperation
- The Achievement of
Cooperation Teams
2. How to Establish and Maintain the Network at
Home (Iwaki, Miho)
- The Establishment and Present Situation of
the Network of Incurable Diseases
- Key to Secure Hospitalization
Facility
- Problems to be Solved
3. The Present Situation of
Local Medical Cooperation (Nakamura, Yoichi)
- Cooperation
Between Hospital and Clinic
- Cooperation Among Clinics
-
Cooperation at the Time of Disaster
- Summary
Chapter 9
Request of Patients and Care Providers
1. Mental Care
(Konagaya, Momoe)
- Feeling of the Patient after the
Diagnosis
- Obstacles against the Mental Care
- When the
Patients Want Care from Family Members Only
2. Daily Life in the
View of Care Provider (Mizumachi, Machiko)
- Supporting to Live
Using Ventilators
Chapter 11
Ethical Problems on Using Ventilators at Home Care (Ito,
Michinari)
1. Guidelines and Laws about Starting, Not-Starting,
and Stopping the Use of Ventilator for So-Called Terminal Phase
Patients
- Guidelines on Terminal Phase Treatment
- Points to
Pay Attention to All Guidelines
- Should "Terminal Phase" Be
Defined?
- On Medical Futility and Medical Waste
- Is Removal
of Ventilator Active Euthanasia or Death with Dignity?
2.
Problems of Starting, Not-Starting, and Stopping the Use of
Ventilator for ALS Patients
- The Meaning of Not-Starting
Ventilator Use
- How the Home Care Using Ventilators Should
Be
References
- Contact Information of
Prefectures With Incurable Disease Specialists
- Other
Associations for Incurable Disease Medical Treatment Facilities, and
the Network of Incurable Diseases
Columns
- A
Patient Talking to Oneself
- Don't Rely on Machine Beeps. Let's
Use Our Five Senses!
- ALS Patients and Their Jobs
- "A
Small Thing"
- Pet Issue in the Viewpoint of Visiting
Nurses
- On Kind Care, Suction
- A Problem of Male Care
Provider
- Care for ALS Patients
- Questions from Care
Providers "We Can Not Understand What the Family Wants?" / Questions
from Health Nurses
- Advantage and Disadvantage of Putting On a
Ventilator
- Diary of Pon-chan
- Eggs
- Men Care
(Written with Cooperation of Ishigaki, Shinichiro; Utagawa Shigenari
and Michiko; Shiota, Shoko; Chiba, Yoshimi; Nakamura, Kikuko, and Hashimoto, Misao)
[Citations]
[Preface]
Kawaguchi and
Konagaya, the editors of this book, became involved in home care with
ventilators in Tokyo at the latter half of 1990s. Kawaguchi, who was
taking care of her ALS patient mother, was introduced to Konagaya,
who was teaching at a college and organizing care volunteers among
nursing students. After meeting as a family member taking care of a
patient and a supporter, we, together with local supporters, began
training programs for nursing students and housewives to become care
providers. Luckily, our work has been growing as we gather forces
with care providers in communities, and a decade has passed since we
first met.
Meanwhile, the system has established so that
patients can rent an artificial ventilator or receive visiting nurse
service and afford them with medical insurance, then home care with
ventilators has become more available. The Long-Term Care Insurance
System was introduced in 2000, suction by non-family members were
approved in 2002, long-hour care was secured with the support fee
system in 2003. Thanks to the beginning of TTPV (Tracheostomy
Positive Pressure Ventilation) with public care system, the long-term
care of more than ten years at home became available in Japan. This
situation is different from the care support in Western countries,
where NPPV (Noninvasive Positive-Pressure Ventilation) is considered
as home care with ventilators, or so to say, the limitation of
autonomy.
This book is unique because it is written by
variety of people in the field actually working, from the patients to
the specialist of home care with ventilators.
The Part 1
"Basics" was written by authors who have first-hand experience in
medical treatment, especially in transition process from NPPV to TPPV
for ALS patients. It is important because many patients give up when
NPPV become ineffective because TPPV has not spread at home care,
although the treatment of progressing from NPPV, to bronchotomy and
TPPV is technically available.
In the Part 2 "Applications",
philosophy of home care using ventilators is discussed by authors who
have been involved in community treatment for long time, or academic
scholars of Sociology and Ethics. The book may be small in size, but
its contents are vast and deep.
The book does not cover much
about legal system related to medical care. Still, the readers can
see how the medical professionals and concerned parties have overcome
the flaw in legal system in order to realize the patients' desire to
live in their home to their last day.
The book also contains many
pictures and columns of patients and care providers, which shows the
bare situation of home care using ventilators. We edit this book for
medical professionals and visiting nurses, care providers,
volunteers, and family members to understand the situation and
meaning of supporting life of patients who live using an artificial
ventilator at home. Of course, we hope this book can advise patients
as a basic guide of technology and knowledge, and encourage them to
live using artificial ventilators as a part of their body.
Lastly, the editors and authors of the book greatly
appreciate the editorial staff in Ishiyaku Shuppan.
Summer of 2009
Kawaguchi, Yumiko
Konagaya, Momoe
*The
flaw in legal system can be caused because of the lack of
consideration when the law was made or change of situation after the
law was installed.
