<< 6. Treatment Preferences in Critical Medical Situations | 8. Advance Health Care Directive >>
7. Communicating Preferences

7.1. With Your Physician

When discussing your Will to Live document with your physician, it would be appropriate to inform the receptionist when you make your appointment that you want to discuss a Health Care Directive and other materials with your doctor, and will need more than a 10 minute visit to do so.

There is a very good handbook written by the Creating Balance in Chronic Disease Partnership (Canadian Diabetes Association, Multiple Sclerosis Society of Canada Manitoba Division and the Arthritis Society) called A Roadmap For Living Well with Chronic Disease in Manitoba. It is available free of charge from the MS Society at 1-800-268-7582. Many of you may not be living with what is termed a “chronic disease.” However, there are sections in this handbook which are very helpful to anyone who might ever need to communicate something with her/his physician.

Things to remember when visiting your doctor include^[8]:

	Writing down ahead of time what you want to say, including any questions you might have;
	Bringing a pen and paper to jot down notes during your discussion. You could also ask to bring in a tape recorder if writing is a difficulty for you. Just remember to request permission before tape recording anyone;
	Bringing someone with you. This serves several purposes. A friend can help you relax (you are having a very important discussion, after all), can remind you of concerns you may have forgotten, can advocate on your behalf if you need help, and afterwards can help you recall what was said;
	If English is not your first language, bring someone along who can help translate what you and your doctor are saying to each other. If you don’t know anyone who can do this, you could contact the Aboriginal Health and Wellness Centre (204-925-3700) or the Manitoba Interfaith Immigration Council (204-977-1000.) Both are listed as providers of volunteer translators for medical purposes.
	Speak up! Be sure to ask questions if there is anything you don’t understand. Be sure they are answered to your satisfaction before you leave.
	Inform your doctor if there are other healthcare providers who are also involved in your care.

7.2. Communicating Preferences with Your Support Circle

Sometimes it is easier to talk about sensitive issues like possible end-of-life situations with a professional like a doctor than it is to discuss it with your friends and families. Illness and dying are often very uncomfortable topics for people who are close to each other – it can remind people about their own mortality or of losses they’ve experienced in the past.

Here are some suggestions for communicating the contents of your Will to Live document with people you trust:

	Explain that creating a Will to Live isn’t a morbid exercise you’ve done because you want to die. Rather, a Will to Live is about empowerment – you want to be prepared if you should find yourself in a critical medical situation. A Will to Live is a tool that helps you communicate important information!
	Explain that a Will to Live is beneficial to your support circle. It will take the guesswork out of a very stressful situation. None of them will have to make decisions on your behalf without a clear knowledge of what you want to have happen!
	Inform your support circle regarding the location of your Will to Live document, the name of your doctor, and the name of your substitute decision-maker. Promise to keep them “in the loop” if there are any changes.
	Reinforce that preparing for emergencies is a good exercise for everyone to do, and encourage your friends to complete a Will to Live document for themselves

7.3. Choosing a Substitute Decision-Maker

What is a Substitute Decision-Maker?

A substitute decision-maker is someone who makes decisions on your behalf if you are unable to make them for yourself. This person is also known as a “patient proxy.”

Who Can Be a Substitute Decision-Maker?

You can choose to appoint anyone who is willing and able to act on your behalf to be your substitute decision-maker. It is recommended that you do not choose the following as your proxy^[9]:

	Someone who is paid to provide you with personal care, unless this person is your spouse, partner or relative;
	Someone who is mentally incapable; or,
	Someone under 18 years of age[10]

It is important to choose a substitute decision-maker who you trust and who knows you well. Choose someone who is assertive, and who can keep a cool head in emergencies. This may not necessarily be your best friend – not everyone has the capacity to remain both calm and forthright in stressful circumstances. This task may also be very difficult for family members of the person who is ill. Emotions can become heated very easily – in order to avoid strong family discord, it might be wise to choose someone who is close to you and known to your family, but one step removed from the immediate family circle.

What is the Role of a Substitute Decision-maker?

If you are unable to speak for yourself in terms of making medical treatment decisions, your doctor or other healthcare provider must contact your substitute decision-maker to seek their consent before they can give you any treatment. It is important to note that the law in Manitoba states that a doctor need not inform you or your substitute decision-maker if treatment is being withheld from you. You can, however, state in your Will to Live that you want treatment in various medical circumstances, and although there may be no legal obligation to treat you, your wishes will be made known.

One exception to the law concerning the obtaining of consent prior to medical treatment is in the case of an emergency in which doctors have to act very quickly.

Your substitute decision-maker must try to make the same personal care choices that you would make in that situation, and follow any instructions you have given. She/he only acts for you when you are unable to make decisions for yourself.

Your substitute decision-maker should:

	Maintain contact with you, involving you as much as possible in any decision about your care;
	Obtain all relevant information from healthcare providers about your medical care and treatment;
	Follow your known care wishes as much as possible in making any decisions regarding your personal care;
	If decisions are to be made for which you haven’t given previous instructions, your substitute decision-maker must consider your values and beliefs, weigh the probable benefits and risks of any course of action, and make decisions based on what he/she believes to be in your best interest.[11]

A copy of the Health Care Directives Act has been included as an appendix at the end of this workbook.


7.4. A Few Self-Assertion Tips

Standing up for yourself can be difficult. Asking questions, and being persistent in getting answers, especially when dealing with busy professionals, can be very intimidating. Dealing with family members, including those uncomfortable with illness or disability, can be hard work.

All these situations become easier when you feel the support of like-minded individuals who share struggles similar to your own. During the creation of your Will to Live, it might help to work at it with a friend or in a group with others.

Ultimately, however, your sense of assertion has to come from you. The following tips may be helpful:

	Use assertive body language;
	- Maintain direct eye contact
	- Maintain as erect a body posture as possible
	- Maintain a firm tone of voice
	If you need to say “no” to a situation that you believe is not beneficial to you, say “no” unapologetically. Be direct and concise. If you mean “no,” saying the word has more power than something like, “I really don’t know,” or “Well, I don’t think so.”

When advocating for yourself with healthcare professionals, it is important to:

	Educate yourself about your medical condition, symptoms and treatments;
	Get the facts;
	Decide what you want (even if all you want is help in understanding your options);
	Gather your support;
	Express yourself clearly and simply, and assert yourself calmly;
	Be firm and consistent; and,
	Follow up so that you both understand what was discussed!

ASSERTIVENESS RIGHTS
I have the right to:
	Say “NO!”
	Be proud of what I do
	Change a situation
	Say, “I don’t agree.”
	Say, “I don’t understand – tell me again.”
	Be treated with respect
	Express my needs, opinions, thoughts, ideas and feelings
	Have a support system
	Take pride in my body & define attractiveness in my own terms
	Be myself and have a separate identity
	Request help and receive information
	Have privacy
	Say, “I’m not willing to accept that!”
	Grow, learn, change and value my experiences
	Recognize MY needs as important

---

8	Creating Balance in Chronic Disease Partnership. A Roadmap For Living Well with Cronic Disease in Manitoba. 2002.
9	This information is drawn from the Ontario Seniors' Secretariat Advance Care Planning Guide. It can be found at the following website: www.gov.on.ca/mczcr/seniors/english/advancecare.htm
10	This is accordance with the Manitoba Health Care Directives Act. See Appendix 11.4.
11	IBid.

<< 6. Treatment Preferences in Critical Medical Situations | 8. Advance Health Care Directive >>


Making A Will To Live - Contents