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The importance of social support in decision making regarding terminal care:
What ALS patients in Japan can teach us.

Hotta Yoshitaro, Abe Akira, ○Matoba Kazuko and Arima Hitoshi*
※ Poster presentation at 11th Congress of the EAPC, 2009 May 9 VIENNA, AUSTRIA.

last update: 20160120

◆ Background / Aim

It is often regarded self-evident that patients of certain progressive and incurable diseases have very low QOL. This assumption is not innocuous. Amyotrophic Lateral Sclerosis (ALS) is a progressive disease that causes impairment of respiratory function. It is incurable by today’s medicine. If the patient does not decide to use a ventilator, death should occur within 3 to 5 years after symptoms begin. It is often understood that the QOL of ALS patients are made very low by these depressed physical and biological functions. Such understanding also leads many ALS patients to choose to refuse the use of ventilator and die when in fact they could live longer if they make a different decision.

In our opinion, however, part of what makes ALS patients’ QOL low is certain social factors: it is not entirely determined by these physical and biological factors. In many cases, family of an ALS patient suffers from excessive burden because the patient needs 24 hours of care. Or when the patient has no family members who can provide care, the patient needs to stay in a hospital for his entire life. These circumstantial factors must play a role when many ALS patients are unwilling to live longer. On the other hand, these social or circumstantial factors can possibly be removed or altered. As we shall show below, in fact, a large part of these circumstantial problems can be resolved by the effort to provide efficient system of social and technical supports.

In Japan, the number of patients who decide to live longer by the use of a ventilator has been increasing by such efforts in recent years. The change owes much to the invention of a special on-screen alphabet board and censor device that together enable ALS patients to communicate with other people. The percentile of the ALS patients who choose to use ventilator is now as large as 30%, which is very large compared to Western countries. Some ALS patients in Japan have lived more than 20 years with the use of the long term mechanical ventilation (LTMV). These patients’ lives and words in fact show that they look positively at the decisions they have made. We shall provide a counterexample to the above mentioned assumption by describing those advanced efforts in Japan and introducing the words of ALS patients.

◆ Cases in Japan

#1, Mr. Kotani’s Case

Mr. Kotani does not live with his family. He is at a most advanced stage of the disease and his body almost entirely lost the ability to move. At this moment, he does not need a ventilator, but because he had tracheostomy, he has lost his verbal communication ability. 
Mr. Kotani needs to be attended by caretaker for 900 hours every month (more than 24 hours a day). He goes out for walk with a caretaker everyday. He makes his day’s plan, including how he eats, where and when to go out.

#2, Mr. Wanaka’s Case

Mr. Wanaka is president of Japan ALS association, Kinki District. He mastered how to use computer after he became disabled. Now he has his own homepage, where he writes as follows:

I wish that... if you are told that you have an ALS and you have a life of 3 to 5 years, you won’t give up your life. I hope you extend your life with life-sustaining treatments. Even if you are on the ventilator, there will be a lot more joyful days than painful ones.  So please survive difficult circumstances, and believe that you can smile someday as long as you.

For communication, he uses the “cheek censor” to choose letters from alphabet board on the screen. He also sends emails to those other ALS patients who developed the disease recently and gives advice to them. In January 2009, he attended an academic conference through web-chat. In February 2009 he also attended the International Symposium, "Research on Home Care of Patients with ALS in East Asia" (held in February 21, 2009 at Ritsumeikan University, Kyoto Japan). http://www.arsvi.com/a/20090221e.htm

◆ ALS patients’ QOL

The lives of these ALS patients who engage in many activities despite their severe disabilities demonstrate that their subjective QOL is largely dependent on what social support is available for them. With sufficient support, many ALS patients will not choose death. In fact, many ALS patients who have decided to use a ventilator, although most of them had had negative images about using it, later came to look at their decision positively.

◆ Conclusions

1. In many societies, ALS patients are given only two choices: namely, they need to choose either to give excessive burden to their families or to stay in a hospital for the rest of their lives.

2. ALS patients can live a normal life at home if they have access to social and medical supports which make up for the loss of their physical functions, and which takes burdens away from their families.

3. Though their QOL also improves in this way, in many societies people call ALS patients who need ventilator “terminally” ill, without providing a better choice (i.e., providing the social and medical supports that we discussed above), and assume that it is time for them to die once they need a ventilator.
Is this really acceptable? If not, it is our task to create efficient social support system.  

※ Bibliography information will be found in our website:

◆ References

[On ALS]

* In Japanese:

ANDO Michihito, HOTTA Yoshitaro, KAWAGUCHI Yumiko, (2008) Feb. 17, "On Disability and QOL - Welfare Assessment of ALS Patients on a Respirator," International Symposium for Identity and Alterity in Multiculturalism and Social Justice -"Conflicts," "Identity," "Alterity,""Solutions?".

ANDO Michihito, HOTTA Yoshitaro, KAWAGUCHI Yumiko, TATEIWA Shin'ya (2007) "Reexamining the capabilities of ALS patients"
 Conference of the HDCA(the Human Development and Capability Association ): "Ideas Changing History"September 17-20, 2007 in NY,

Kawaguchi Y, and Misao Hashimoto, "In-Home ALS Patients' Narratives with regards Decision-Making about Ventilator: The Roles of Medical Professions who Support Patients' Power to Live," presented at Annual Conference of Japan Intractable Illness Nursing Society, Sapporo, 2006 * See: http://homepage2.nifty.com/ajikun/memo/200608nanbyokango.htm

Tateiwa S, (2004) "ALS: Immovable Body and Breathing Machine," Igaku Shoin.

* In English:

Bromberg MB, Forshew DA (2002):Comparison of instruments addressing quality of life in patients with ALS and their caregivers. Neurology.58:320-322

Chio A, Gauthier A, Montuschi A, Calvo A, Di Vito N, Ghiglione P, Mutani R (2004):A cross sectional study on determinants of quality of life in ALS. J. Neurol. Neurosurg. Psychiatry.75:1597-1601

Foley G, O'Mahony P, Hardiman O (2007):Perceptions of quality of life in people with ALS: effects of coping and health care. Amyotroph. Lateral. Scler.8:164-169

Gauthier A, Vignola A, Calvo A, Cavallo E, Moglia C, Sellitti L, Mutani R, Chio A (2007):A longitudinal study on quality of life and depression in ALS patient-caregiver couples. Neurology.68:923-926

Gelinas DF, O’Connor P, Miller RG.(1998) “Quality of life for ventilator-dependent ALS patients and their caregivers.” J Neurol Sci (suppl. 1):S134-S136.

Green C, Kiebert G, Murphy C, Mitchell JD, O'Brien M, Burrell A, Leigh PN (2003):Patients' health-related quality-of-life and health state values for motor neurone disease/amyotrophic lateral sclerosis. Qual. Life. Res.12:565-574

Kaub-Wittemer D, Steinbuchel N, Wasner M, Laier-Groeneveld G, Borasio GD (2003):Quality of life and psychosocial issues in ventilated patients with amyotrophic lateral sclerosis and their caregivers. J. Pain. Symptom. Manage.26:890-896

Lo Coco G, Lo Coco D, Cicero V, Oliveri A, Lo Verso G, Piccoli F, La Bella V (2005):Individual and health-related quality of life assessment in amyotrophic lateral sclerosis patients and their caregivers. J. Neurol. Sci.238:11-17

Trail M, Nelson ND, Van JN, Appel SH, Lai EC (2003):A study comparing patients with amyotrophic lateral sclerosis and their caregivers on measures of quality of life, depression, and their attitudes toward treatment options. J. Neurol. Sci.209:79-85

[On the case of Leslie Burke]

Burke, R (on the application of) v The General Medical Council Rev 1 [2004] EWHC 1879 (Admin)

Burke, R (on the application of) v General Medical Council & Ors [2005] EWCA Civ 1003.

* In Japanese:

HOTTA Y, ARIMA Hitoshi, ABE Akira, and MATOBA Kazuko 2009 "Lessons of Lesley Burke Case in the UK: Second-Thoughts on the Principles of Biomedical Ethics," Ars Vivendi, Vol.1, Seikatsu-shoin, 2009. pp.131-64. (in Japanese)

MATOBA Kazuko & HOTTA Yoshitaro, June 23, 2007 "What Are Meant by Withholding of Life-support Treatment/Guidance on Halt of it: Cases in Britain"
The 12th Annual Convention of Japan Society for Palliative Medicine, Okayama Convention Center

* In English:

Biggs, Hazel, 2007 "'Taking account of the views of the patient', but only if the clinician (and the court) agrees - R (Burke) v General Medical Council" Child and Family Law Quarterly, Vol 19, No 2; 2007: 225-238.

Booth, Malcolm, 2006, "Ethical issues in resuscitation and intensive care medicine," Anaesthesia and Intensive Care Medicine 2006; 8: 36-39.

Chairs of all clinical ethics committees (CEC), 2005, "Burke v GMC Summary of CEC responses to High Court Judgement: Request for comments and views on the Judgment in Burke v the General Medical Council" UK Clinical Ethics Network.

Coggon, John 2006 "Could the Right to Die with Dignity Represent a New Right to Die in English Law?" Medical Law Review, 14; Summer 2006: 219-237.

Cordrey, Thomas, 2005, “Case Note on R (Burke) v General Medical Council” http://www.lawcf.org/CMS/uploads/611/documents/Case%20Note%20on%20Leslie%20Burke%20%20%2029th%20July%202005.pdf

Foster, C., 2005, “Burke: A tale of unhappy endings,” Journal of Personal Injury Law, : December. p. 293: JPIL Issue 4/05.

Gurnham, David 2006 "Commentary: "Losing the Wood the Trees: Burke and the Court of Appeal" R (on the Application of Oliver Leslie Burke) v. The General Medical Council" Medical Law Review, 14; Summer 2006: 253-263

Hale, Catherine, 2006, "Recent thinking about end of life issues," Best Practice & Research Clinical Anaesthesiology 20-4: 605-617

Levy, Sharon 2005 "GMC Guidance on Withdrawing and Withholding Life Prolonging Treatment――The Law Intervenes" Clinical Risk, 11-4; Jul 2005: 165-168

Mason, J. K. and Laurie, G. T. 2005. “Personal Autonomy and the Right to Treatment: A Note on R (on the application of Burke) v General Medical Council,” Edinburgh Law Review, 9: 123-132. [pdf: 10] (https://www.era.lib.ed.ac.uk/bitstream/1842/2444/1/burke-autonomy.pdf)

Millar, Alison 2005 "Human Rights considerations for the Clinical Negligence Practitioner" Clinical Risk, 11-4; Nov 2005: 243-248.

Pence, G., 2004, Classic Cases in Medical Ethics, Fourth Edition, McGraw Hill.

Rowland, B., 2006, “Communicating Past the Conflict: solving the medical futility controversy with process-based approaches,” U. Miami Int’l & Comp. L. Rev. 14.

Speker, Barry 2006 "Recent UK controversies in end-of-life care," Current Anaesthesia & Critical Care 17; 2006: 277-282

Stewart, Angus 2007 ""Best Interests": Towards a more Patient-Friendly Law?" Edinburgh Law Review, Vol 11; 2007: 62-80

Thiagarajan M, Savulescu J, Skene L. 2007 "Deciding about life-support: a perspective on the ethical and legal framework in the United Kingdom and Australia." Jounal of Law and Medicine, 14(4); 2007 May: 583-96

Woodcock, Tom, Wheeler, Robert, 2005 "Glass v United Kingdom and Burke v General Medical Council. Judicial interpretations of European Convention Rights for patients in the United Kingdom facing decisions about life-sustaining treatment limitations" Journal Intensive Care Medicine, Vol 31, No 6; June, 2005

Yuill, Kevin 2005 "Leslie Burke: life, death and law Laws preventing doctors from withdrawing patients' food and drink are no way to reassert a culture of life" Spiked-Health, 20; May (http://www.spiked-online.com/index.php?/site/article/1040/)

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