February 3, 2006

Community Coalition for the Implementation of Adult Guardianship Legislation

C/O BC Coalition of People with Disabilities

FAX 604-875-9227

Dear Sir/Madam,

BC FamilyNet Society is an independent provincial network of families formed nine years ago to protect and enhance Community Living services for individuals with developmental disabilities and children and youth with special needs.  Our Society supports the intent of the Representation Agreement Act and does not accept the need for further proposed Advance Care Directive Legislation.  This effort by thousands of people over a period of 15 years clearly sets out the importance of this hard fought legislation.

We do, however, recommend, instead of the proposed initiative, that efforts be made to simplify and streamline the method of setting up a Representation Agreement as recommended by Prof. McClean (#26) and that more funding be directed toward increased public education and staffing levels to facilitate and forward the importance of advance care planning in the event of incapacitation.  With such an agreement in place the representative (s) will be able to make decisions according to the individuals wishes.  The old approach to advance directive was often used during a time of great family stress and often not updated as appropriate. 

We urge the government to rethink its position on this important issue.

Sincerely

Anita Dadson, President,

BC FamilyNet

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Community Coalition for the Implementation of Adult Guardianship Legislation

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Urgent Community Alert

February 6th 2006

Dear Community Partner:

The Provincial Government is Proposing Advance Care Directive Legislation

We are extremely concerned about the provincial government’s proposal to implement advance care directive legislation. Advance care directives are stand-alone written instructions that will override Representation Agreements. For example,

What if…you were rushed to the hospital emergency and minutes later when you were afraid and in pain hospital staff ask you to sign a legally binding form—an advance care directive—about the treatment you do and do not want to receive?

What if…you were diagnosed with cancer and your doctor says there is no cure? The nurse gives you an advance care directive to complete which is put in your medical file. A year passes. You respond well to treatment and make a Representation Agreement.

A Representation Agreement is a legal document that names the person or people you trust to make health and personal care decisions for you if you become unable to make your wishes known. Your representative(s) (your proxy) must make decisions according to your instructions as they apply to your current circumstances.

You discuss your wishes with your representative. A while later you become ill and your ability to communicate is impaired. The form you filled out over a year ago says you do not want to be on a machine to help you breathe, but you have complications from pneumonia and need this temporary help. Because you are incapable of stating your wishes the doctor consults your advance directive and does not have to get consent for giving or refusing treatment from the person named in your Representation Agreement.

You or your loved ones could face the kind of harrowing

situation described above if this proposal becomes law.

The proposal will override the safeguards within the Health Care Consent Act and the Representation Agreement Act that seniors and disability communities have supported for over 16 years.

The Community Coalition for the Implementation of Adult Guardianship Legislation needs your support to send a strong message to the provincial government:

We support keeping the Representation Agreement Act as

British Columbia’s ONLY legal tool for advance care planning.

What’s Wrong With the Proposed Legislation?

The advance care directive legislation will not safeguard your wishes.

• An advance directive, as we have said, will override Representation Agreements.
  

• People come into contact with the health system when they are at their most vulnerable. There is great risk that patients will feel pressured to sign Ministry of Health advance care directives because they think it is a necessary procedure to access care not because they fully understand it or because it reflects their wishes.
  

• There is a serious ethical conflict when those responsible for providing care (the Ministry of Health and health authorities) are also promoting advance care directives that may limit care. There must be several arms lengths between the service provider and the making of directives or it may be seen to be a method of rationing health and personal care services.
  

• The proposed legislation gives the authority for quality-of-life decisions to a care provider (doctor, social worker, case manager, facility director, etc.) who may not know much about you and who may move on to another position or location.
  

• The legislation is being proposed despite the many flaws that have been well documented with this approach including:
  

- Instructions, which are written some time before being used, may be out-of-date or not include more recent wishes you want followed.

- Instructions may be based on old medical information and not address newer treatments you may or may not want.

- It is impossible to give instructions for every potential situation you may face in the future.

- Research shows people’s preferences about treatment change as their health condition changes.

Why BC Does Not Need New Legislation

• The advance care directive is an old approach and a step backward from current law and safeguards.
  

• The proposed legislation is out-of-step with the government’s goal to build the best system of support in Canada for seniors and people with disabilities.
  

• Because We Have the Representation Agreement Act
  

- BC already has Canada’s best advance care planning legislation, the Representation Agreement Act. The

Act has been supported and developed by British Columbians because it is ethical, balanced and effective.

Representation Agreements are based on best practice and current research findings.

- A Representation Agreement is the communication between you and your chosen representative. It

ensures advance care planning is an ongoing process,not just information on a piece of paper. If you are

incapable, your representative is equipped to represent your wishes when a health care provider

communicates with them about your diagnosis and treatment options. The representative will consent to

treatment or refuse treatment according to your wishes. It’s about making sure decisions are made based

on these wishes, as well as current medical information as it applies to your current health condition.

Add Your Voice–Say NO to New Advance Care Directive Legislation

Representation Agreements are working very well. British Columbia does not need advance care directive legislation. Representation Agreements offer British Columbians a range of choices about how to express their wishes, including advance care instructions.

We need your help NOW to ensure the Representation Agreement Act is

BC’s ONLY legal tool for advance care planning.

Please complete and fax us the endorsement form now to: 

The Community Coalition for the Implementation of Adult Guardianship Legislation,

C/O BC Coalition of People with Disabilities,

Fax: 604-875-9227

(form is copied below or go to the following link to print the endorsement form on page 4. http://www.bccpd.bc.ca/i/pdf/AdvanceDirectiveAlert.pdf

If you would prefer to email the endorsement form please email us at feedback@bccpd.bc.ca and we will send you the form electronically.

Contacts

Joanne Taylor: 604-408-7414, jtaylor@rarc.ca

Margaret Birrell: 604-875-0188, feedback@bccpd.bc.ca

Cindy Chapman: 604-875-1119, cchapman@bcacl.org

Don Beddows: 604-538-1178, donbeddows@telus.net

Thank you for your support.

NO to New Advance Care Directive Legislation in BC

Endorsement Form

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• I/ We believe that British Columbia does not need new advance care directive legislation.
  

• The Representation Agreement Act is safe, ethical and effective.
  

• We support keeping the Representation Agreement Act as British Columbia’s ONLY legal tool for advance care planning.
  

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Organization / Individual:

Contact Person:

Address:

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Please fax back to:

Community Coalition for the Implementation of Adult Guardianship Legislation

C/O BC Coalition of People with Disabilities

Fax: 604-875-9227

If you would prefer to email the endorsement form please email us at

feedback@bccpd.bc.ca and we will send you the form electronically.