"Pocket Guide of Using Ventilators at Home: Life and Support"

Kawaguchi, Yumiko & Konagaya, Momoe (eds.) August 10, 2009 Ishiyaku Shuppan, 212p
Japanese Version

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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


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 10
Decision of Ventilator? (Tateiwa, Shin'ya)

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

- Contact Information of Prefectures With Incurable Disease Specialists
- Other Associations for Incurable Disease Medical Treatment Facilities, and the Network of Incurable Diseases

- 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)



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.

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