Planning for the Future: Advance Care Planning

Advance care planning (ACP) is when you think about what matters most to you and how that affects your health and personal care. It helps you share your wishes and preferences with the people you trust, including a substitute decision maker (SDM), a person who can make care decisions for you if you’re ever unable to. 

ACP is one part of life planning, which includes financial and legal matters, health and social services, and community supports. Life planning helps you take control of your healthcare and daily life and is an ongoing process that can be updated as your needs and priorities change.

Advance Care Canada has developed a guide that you can follow as you begin your advance care planning, see My Advance Care Planning Mini Guide.

Advance care planning can help you to express your beliefs and wishes and clearly share them with your loved ones and healthcare team. It also provides independence and control over certain parts of your care. This can help you and your loved ones prepare for the future, especially if you are unable to express your wishes to your healthcare team. 

Your SDM is someone you trust to make healthcare decisions for you if you can’t make them yourself. This might be your spouse or partner, a family member, or a close friend. Choose someone you feel comfortable talking to about your wishes — even difficult topics — and who is willing to speak up for you.

Each province has rules about who can be an SDM. If you don’t choose someone, the law will decide who can make decisions for you. If you can understand your options and say what you want, you will always make your own healthcare decisions.

An advance care plan is not the same as a will or power of attorney. You also do not need a lawyer to complete it. However, will or estate planning and a power of attorney document can be important parts of planning for the future. See Financial Planning for more information. 

If you are thinking about donating your body or brain to science, it’s a good idea to research your options and talk about your wishes early. Talk to your neurologist to see if they are aware of brain banks. You can include these wishes in your advance care plan and make sure your loved ones know about them too.

Across Canada, there are a few brain banks, and some universities accept whole-body donations. Each program has its own rules — some require forms to be completed while you are alive, while others may ask your next of kin to complete paperwork after your death. Transportation of the body or tissues to the institution may also need to be arranged. The following universities with medical schools may be contacted for more information: 

• University of Alberta
• University of British Columbia
• University of Calgary
• Dalhousie University
• University of Guelph
• University of Manitoba
• McGill University
• McMaster University
• University of Ottawa
• University of Toronto
• Western University

To get home care services, you need to contact your local home care office. A doctor or other healthcare provider can refer you; a family member can help make the referral, or you can contact them yourself. Most provinces or health authorities have a main phone number you can call to get started.

When you call, someone will ask you questions about your situation to understand what kind of help you need, and you’ll be assigned a care coordinator (sometimes called a case manager). This person is usually a nurse, social worker, or another healthcare professional. They may visit you at home to do a more detailed evaluation and recommend the services that would best support you. 

Your care coordinator will be your main point of contact. If your needs change or you need more support, you can contact them directly. If you are unsure of where to start, connect with an MS Navigator at 1-844-859-6789 or emailing msnavigators@mscanada.ca

There is a range of home care services available. The exact services depend on your location and individual needs. Examples of home‑care services include help with personal care (like bathing or dressing), nursing care in the home, and care coordination to help plan and organize services.

To learn more about what is available in your province or territory, visit the Canadian Home Care Association.

In many provinces, there are programs that let you manage your own home care, sometimes called self-managed care, self-directed care, or direct funding. Through these programs, you can receive government funding to hire and direct your own care staff, which gives you more control over who provides your care, when, and how. 

If you choose this option, you also take on the responsibilities of an employer. This may include organizing payroll, supervising staff, and providing training. In some provinces, you can also use the funding to hire staff through a private home care agency. To learn more or see if this is available to you, contact your care coordinator or your local home care office.

In Canada, there are currently no specific care and housing options dedicated to people living with MS. We are committed to advocating for equitable access to a continuum of comprehensive, appropriate, and high-quality home care and accessible housing.

MS Canada directly supported the development of the Canadian Standards Group (CSA’s) National Standard for Mental Health and Well-Being in Long Term Care (LTC) and Assisted Living (AL) which includes a section on considerations for younger residents.

We’ve also created a resource page for long-term care staff, to help them better understand the needs of residents living with MS.

• Advance care planning: Talking about your values, wishes, and future care decisions.
• Symptom relief: Help with pain, spasticity, fatigue, and bladder issues.
• Rehabilitation: Support to maintain comfort and independence.
• Support for caregivers: Emotional and practical help for those providing care.
• Spiritual and emotional care: Support for coping with the emotional impact of MS.

Palliative care for MS can look different over time. 

Early on: This support can start soon after you’re diagnosed. It’s about helping you understand MS, adjust to what’s happening, and find ways to manage daily life. It can also support your emotional and spiritual well-being, along with your family or care partners.

As needs change: Over time, the focus is on helping you feel as well as possible day to day. This can include managing symptoms, supporting your mental health, and connecting you with services like rehabilitation or other specialists if needed.

Later on: If MS becomes more advanced, care focuses on comfort, quality of life, and planning ahead. This can include managing more complex symptoms, talking about your wishes for future and end-of-life care, and making sure you and your loved ones feel supported.

Care teams may include:

• Doctors, nurses, and nurse practitioners
• Social workers and counsellors
• Personal support workers
• Family and caregivers
• Spiritual care providers
• Volunteers and community members

Care can be provided at home, in hospitals, long-term care homes, or hospices. Research shows that palliative care can improve comfort, sleep, and overall quality of life. It may also reduce stress for caregivers.

Accessing palliative care usually starts with a conversation between a person and their primary care providers or their MS healthcare team about their medical needs. They use a palliative approach to care, which means they focus on improving quality of life by managing symptoms, supporting daily life, as well as emotional and practical needs, alongside ongoing treatment. 

If a person's health needs become more complex, their primary care provider or their MS healthcare team can provide a referral to a specialized palliative care team. These specialists have extra training and can provide more support in different settings, including at home, in a hospital, or in a hospice.

Because healthcare is managed by each province and territory, the programs and services available will depend on where a person lives. Local health authorities or home care offices can provide information on what supports are covered, like nurse visits or medical equipment like hospital beds and oxygen. 

Starting these conversations early helps to make sure that the right level of comfort and support is in place where it is needed most.

According to the Government of Canada, to be eligible for MAID you must meet all the following criteria:

• be eligible for health services funded by a province or territory, or the federal government; in some cases, this may include meeting a minimum residency or waiting period
• be at least 18 years old and mentally capable, meaning you can make health care decisions for yourself
• have a grievous and irremediable medical condition (see next section)
• make a voluntary request for medical assistance in dying (you must be able to make the decision on your own with no outside pressure or influence)
• give informed consent to receive medical assistance in dying

Grievous and irremediable medical condition

To be considered as having a grievous and irremediable medical condition, you must meet all the following criteria. You must:

• have a serious illness, disease or disability
• be in an advanced state of decline that cannot be reversed
• experience unbearable physical or mental suffering from your illness, disease, disability or state of decline that cannot be relieved under conditions that you consider acceptable

You don’t need to have a fatal or terminal condition to be eligible for MAID. 

Eligibility is assessed for each person individually, based on their unique situation. This means eligibility isn’t based on your diagnosis alone, it’s about how the disease affects your life, your body, and your well-being, in terms of experiencing unbearable suffering from your MS and/or level of disability. 

It’s important to talk with your healthcare team, and with your loved ones about what this means for you. These conversations can help you understand your options and make decisions that fit what matters most to you, your experience with MS, and your wishes for care. You must be able to provide informed consent to be eligible for MAID. 

Informed consent is when you give permission to receive MAID after you receive all the information you need to make your decision. This includes:

• your medical diagnosis
• available forms of treatment
• available options to relieve suffering, including palliative care

You must be able to give informed consent both:

• at the time of your request
• immediately before receiving medical assistance in dying, unless special circumstances apply

You can withdraw your consent at any time and in any way. You need to know all these options so you can make the choice that is right for you. 

The first step is to speak with your healthcare team. This could be a primary care provider or your MS healthcare team. 

People can also contact the MAID program in their province or territory directly to connect with a MAID navigator or care coordinator who can explain the steps, answer questions, and help guide people through the process. Please click on the province below for more information. 

• Alberta
• British Columbia
• Manitoba
• New Brunswick
• Newfoundland and Labrador
• Nova Scotia
• Northwest Territories
• Nunavut Department of Health (Email: Maid.Info@gov.nu.ca or Phone: 867-975-5700 for general inquiries)
• Ontario
• Prince Edward Island
• Quebec
• Saskatchewan
• Yukon