�gMulti-Culturalism�h with ALS

Yumiko Kawaguchi
aji-sun@nifty.com

2006/01

The International Alliance of ALS/MND Associations was established in 1992.  The Alliance holds the Alliance Annual Conference every year where the members of ALS/MND Associations gather from all over the world and attend.  In fact, last year in Dublin, Ireland, the Annual Conference was held for four days from 4th to 7th of December.

The objectives of each member of ALS/MND Associations assigned by the Alliance during this conference were as follows:

* To develop support

* To provide care services

* To undertake influencing and advocacy

* To raise funds for research and care programmers

The Alliance has developed its programme of work such that it is now able to provide to its members in respect of these activities.

However, a number of places in the world where there is still no ALS or MND Association or where ,if an Association exists, it is unable ,through lack of financial or other resources, to establish itself in a sufficient way to make a meaningful impact on the lives of people with ALS/MND in its area.

1.  Activity Report

On the first day of the Annual Meeting in Dublin, the Partnership Programme was held.  In 2000, during the 8th Alliance Annual Conference in Aarhus (Denmark), the first Partnership Programme was launched.  In this program the members of the Alliance were divided into 5 groups according to their regions and practice some activities exploiting their unique characteristics of the respective regional cultures.  Each group discussed and reported different areas of the study and activities in connection to ALS.  The summary of activity report from each group is as follows.

1-1,Northern Europe Group:

The Northern Europe Group is the most active group promoting and practicing the most organized activities. 

The Scottish MND Association and the MND Association (of England Wales and Northern Ireland) are currently exploring the possibility of establishing an e-campaign which could be used to lobby the UK government: if successful this could be rolled out to the rest of the Northern Europe Group.

The Nordic Conference were organized by Jens Harhoff who is an ALS paerson, for those from Iceland,�@Denmark,�@Finland and Norway: the meeting took place between September 18 and 22. There are plans to produce some conclusion and a report on the conference with the possibility of these being published on website. The purpose of this first meeting was:

 * to insure the best possible treatment for all ALS persons in the Nordic countries

 * to inform and insure the knowledge of the Alliance �gPartnership Programme�h and extend the cooperation in the countries of the Nordic region.

 * to hold social events , to create personal friendship across borders, with the purpose to increase the knowledge of treatments available in the different countries

 * to assist that all countries in the east sea region will join the Alliance, and to extend the Nordic cooperation to other countries in the region

 * To work for increased research and treatment in the Nordic countries.

Through the Nordic Conference Jens successfully achieved the empowerment of Norwegian patients.  For instance, Norwegian patients fought against the city and for the first time won 24-hour care security for ALS patients.  Consequently, his wife now works as a caregiver for him only 8 hours a day but concurrently earning an income from helping her husband.  From this achievement, He has fortunately returned home from the care facility and now spends a happier life with his family.  Not only in Norway but also in Iceland ALS patients are playing an active role in extending the knowledge of domiciliary care to improve the quality of life of patients.

1-2,Southern Europe/Africa Group:

The Southern Europe/Africa Group released an activity report of Kathy Mitchell who was given a grant by the Alliance last year. 

Kathy , a professor of Nursing Care at the Algonquin College in Ottawa (Canada).was the guest of Yugoslav MND Association and the Institute for Neurology in Belgrade, from June 13 to June 24: She gave lectures on the ALS/MND, enteral (internal?) feeding, and palliative care. During Kathy�fs visit to Serbia, all lectures were very interesting for the medical care professionals and a lot of them attended the sessions.�@Lathy had a meeting with the Deputy Minister of Hearth of the Republic of Serbia to discuss the possibilities of financial help for Neurological Clinic and especially for ALS/MND patients.  She had also a meeting with the Canadian Ambassador�fs wife in the Canadian Embassy in Belgrade,�@to talk about the possibility of getting a financial support for Yugoslav MND Association.

Italian ALS Association (AISLA) is planning to organize next year a Meeting of the Southern Europe/Africa Group in Italy: it will be the third Group Meeting (after those of Novara in 2001 and Toledo in 2002).

Italy takes a strong leadership in this group possibly because the chairman of AISLA, a former ophthalmologist Mario Melazzini himself is an ALS patient whose disease seemingly has not made much progress since last year.  Having both functions as a patient-support group and a study group AISLA is capable of participating in activities directly connected to the decision-making processes for policies.

1-3,America Group

The America Group did not make announcements on their system and financial policies. 

In America, after the onset of ALS symptoms both medical fee and nursing fee are generally covered by a personal insurance and pension. On the contrary, for those who are eligible for Medicare or Social Welfare, they receive the most handsome benefit security.  In either case, there still does not exist any evidence of long-term use of a mechanical ventilation or home care with the patient�fs family being the center of nursing the patient.  Nurses at some clinics specialized in incurable diseases accumulate the experience and knowledge of the ALS-specific care through training.  Nevertheless, most of those clinics are also run by contributions from private organizations.

ALS Nursing For the America Workshop was organized from August 4 to August 6.in Chicago, Illinois USA). ALS nurses and clinic coordinators from North, Central and South America were invited .The workshop offered training for new nurses/coordinators and review for the experienced. Also, the opportunity was available for discussion about how to proceed with the future of ALS nursing. Funding has been obtained by The Les Turner Foundation and other sources.

1-4,AustraliAsia Group

The AustraliAsia Group was divided into Australia Group and Asia Group to make announcements. 

In the Australia Group, Australia and New Zealand have very close relations with each other.  The report was made mainly on the bilateral exchange on Global Day.  Global Day was designed for the Alliance to publicize ALS globally on the same day. 

On Global Day , June 21, MNDAV and MNDNSW (members of the MND Associations of Australia , MNDAA)held a one-day National Conference on Care and Management of ALS/MND Association of New Zealand . As part of the conference activities, on June 20, Regional Advisors met to discuss case coordination and case management issues, and New Zealand was represented at the meeting.

On July 22, Rod Harris visited MNDA New Zealand and met with the Chairman, Edith McCarthy and Cease Leader; on July 23, Rod Harris spoke at the MNDA New Zealand Annual General Meeting and 20th birthday celebration about the Alliance.

There are ongoing contacts between MNDAA and MNDA News Zealand, and some discussion with a patient from Indonesia who is interested in the starting an MND Association.

In the Asia Group, there have been some international interchanges between patients on an individual basis; yet, a meeting has not been organized at a patient association level.  However, the Taiwan MNDA organized a visit to Japan(Okinawa) from May 7 to May 10:There were totally 29 patients and 43 caregivers Taiwan MNDA is making good cooperation and communication with Japan MNDA both in exchanging the ALS/MND and care experience by each other.

During the Alliance Annual Conference, Joyce from Taiwan and I had an opportunity to discuss about our future bilateral exchange between Taiwan and Japan. We came to the conclusion that since the next Alliance Annual Conference will take place in Yokohama in Nov, 2006, for the time being it will be nice to have some sort of interchange between the two countries at a patient association level at the next Conference. 

The above was the summary of the interchange of the respective countries�f patient association but now I would like to continue on the use of Advance Directive proposed by JALSA and the position of the Alliance in this matter.

2. Study on the use of Advance Directive for ALS patients in JAPAN

In Japan, There are approximately 7,000 patients with ALS; 25% of those patients are in hospital and about 70% are at-home care. Of the total number of ALS patients about 30% use an artificial respirator inserted through a tracheotomy .As a part of ALS patient support, Japanese government provides financial support for the medical expenses and long-term care facilities. In addition, as for those ALS patients at home care, domiciliary visit and nursing as well as some health insurances with home care services are available.

2-1,Gap between ideal and reality

However, the current availability of ALS patient support is inadequate and its system is far from the desired system where patients can make decisions liberally to receive effective and optimal care.

(However, the current availability of ALS patient support is inadequate and its system is far form the desired system where patients can make decisions liberally to receive effective and optimal care.)?

2-2,Improving QOL

JALSA is committed to developing better medical environment for ALS patients and improving the quality of life of patients and their family.

2-3,ALS Treatment Guideline

The Japan Society of Neuroscience submitted a new ALS Treatment Guideline in 2002; nonetheless, many physicians still fail to provide sufficient support and explanation of the disease and treatment to patient with ALS.

In response to the presentation given by JALSA, the chairman of the Alliance made the following propositions.

But what of the rest of the world?  What is our experience in working with people diagnosed with ALS/MND?  Are there laws that support a person�fs right to refuse treatment, or have treatment withdrawn?  Should the Alliance have a policy about patient�fs rights in respect to being fully informed about treatments and interventions, and their impact on quality of life?  Would such a policy be of assistance to reinforce a country�fs beliefs and practices where the patient�fs rights are supported and enforced, and would it assist in countries where patient�fs rights are not supported?  Can we, the Alliance, move forward the care and support of people living with ALS/MND by considering what we feel the rights of patients should be in relation to their care and treatment?

Rod Harris said it is a person�fs right to refuse treatment, or have treatment withdrawn. But the question is, is that the only alternative?

We, JALSA, as a patient association of a country where the Advanced Directive is not protected by the law, raised the question to know the effectiveness of the Advanced Directive.  This question was raised in view of a different aspect from Ron who believes it is a patient�fs right to terminate his life.  In other words, when there is no guarantee of the right to choose the treatment freely, why should the patients be able to order in advance the right to refuse treatment or the freedom of death.

As such, there is no protection of the right to the alternatives for living in many countries.  Many patients can live for a long time after the insertion of a ventilator but they are afraid that they will become a burden to their family and society.  However, love for the family, friends and closely related people is common to all lands.  Patients may not be afraid of death, but it must be terribly painful to leave those loved ones and die early for patients considering the grief of the bereaved families and friends.    There were many patients and their families in the conference room.  All felt the same.  Even if the QOL decreases, patients�f families all wish that their beloved ones to live long, yet they do not have confidence whether they can handle all the care patients�f need. Also, although patients can make their own decisions, they can not sustain life without families�f consent.

3,Conclusion

The law does not go beyond the border between countries.  The border, therefore, divides patients into those who can and who cannot receive the treatment.  Additionally, even for the care for incurable diseases there are significant differences over the border between countries.  Because the way of care is greatly influenced by each country�fs culture, family tradition and so on.  For incurable diseases, �gcaring�h is rather more important than �gcuring�h.  That is why the country�fs cultural background cannot be disregarded with the care by patient�fs family.  Japanese for example believes that a family shares the common destiny, therefore, the family consent is required for the patient�fs decision making. 

In spite of all the complications, the Alliance is seeking for the Standards of Care, love of mankind and patient�fs rights that can overcome the differences of laws and cultural customs. 

This is an interesting paper. I am far from being a specialist of this issue but here are two comments. First, one way of approaching the cultural difficulty would be to chose a strategy a bit like the following. It is probably possible to get the agreement of all the different countries associations on the ultimate goals of the association (in fact you already have that) then cultural issues are taken into account in the different ways to achieve this same goals. Which means that though the abstract goals would remain the same the specific objectives could vary from country to country. What makes this problem even more difficult is that there are not only cultural differences to take into account but also legal one and that the two domains interact. For the law of each country does not only reflect local culture but also reacts to it. For example in a country were family care is considered as part of the culture, as what is normally expected, then the government may sometimes avoid making any provision for that because it considers that it is not its duty or responsibility. The other comment is slightly contrary to what was just said it is that in �gethical committees�h in hospital or as legal advisers, members from different groups, cultural communities, religions and professions, often disagree concerning principles. However, in spite of those disagreements they usually agree on what to do in specific cases. The reasons why this comment is nearly contradictory with my first one, is because that first comment suggested that it may be easier to agree on more abstract goals while this second one suggests that in spite of disagreement on abstract goals it is often possible to agree on specific objectives.

Best,

Paul Dumouchel