Advice Center

Illness, especially terminal illness, brings a loss of control. You’re no longer able to make the decisions you once made, and without proper direction, your wishes may not be respected.

Advance directives are a way of ensuring your wishes are communicated and followed through by your medical team. Dying is especially delicate. You may know what you want from your final moments, or how we want your loved ones to say goodbye. Advance directives help you make these decisions while you’re still able, giving you the end-of-life treatment you feel most reflects you.

What are advance directives?

Advance directives are a way of ensuring your wishes and personal values are respected when it comes to healthcare decisions, if you are no longer able to make those decisions for yourself.

This process is designed to give you control over important decisions, even when you are no longer in control of your physical and mental health. For this reason, you can only give advance directives when you’re competent enough to do so. “Competent” meaning while you are still capable of making decisions for yourself.

Advance directives can say who makes the decisions, what decisions they can make, and how those decisions should be made. Here are several examples to help illustrate advance directives:

• A man with a persistent heart condition signs a document stating to not resuscitate him in the event he suffers a heart attack in his home.
• Similar to a power of attorney, a man signs a document stating that his wife is able to make all healthcare decisions for him should he no longer be competent.
• A woman signs a document declaring she does not want life-extending care, such as artificial feeding or breathing if she falls into a persistent vegetative state.

When should I make an advance directive?

In short, make an advance directive while you’re well.

You don’t need to be ill to make an advance directive. They are especially important in the event of an unforeseen circumstance, like a sudden health event or accident.

It is important to have an advance directive in place even if you’re healthy. But,if your health is failing quickly, or you receive a diagnosis with a foreseeable outcome, it’s best to make an advance directive right away.

What are some common advance directives?

The following are some of the most common advance directives:

• Life-sustaining treatment and end of life care (Canada)
  In Canada, you can outline advance directives for the following:
  
  
  • Palliative care
  • Do-not-resuscitate (DNR) orders
  • Refusal or withdrawal of treatment
  • Refusal of food and drink
  • Palliative sedation to ensure comfort
  
  It’s important to outline your wishes for the above in advance directives and inform your healthcare proxy or power of attorney. It’s also important that your healthcare team be given a copy of these records.
  
  

• POLST (Physician Orders for Life-Sustaining Treatment) (USA)
  A POLST form has a set of specific medical orders that a seriously ill person can fill in and ask their health care provider to sign. This form encompasses your wishes in case of emergency, such as whether to go to hospital or be put on a breathing machine. It must be signed by your doctor and ensures that emergency personnel, who otherwise wouldn’t be required to follow advance directive or follow the wishes you outline in your POLST form.
  
  

• Organ donation
  You can choose whether you want your organs to be donated in your advance directives. In the US and Canada, you simply need to register your intent to donate your organs with Medicare in your province. Then, they can issue you a new Medicare care with that information included.
  
  

• Do-not-resuscitate (DNR) orders
  A do-not-resuscitate or DNR order means that if you stop breathing or your heart stops, doctors or paramedics will not try to revive you. If you are in the hospital, you can ask your doctor to add this order to your record. Be sure to check if your healthcare institution requires an updated form each time you are admitted.
  
  If you are outside of the hospital, you can get a wallet card, bracelet, or other DNR documents to keep on you. These are meant for emergency medical personnel who answer 911 calls.
  
  It’s important to note that policies around at-home or non-hospital DNR orders vary widely by place. In the United States, there is a more formal structure in place. In Canada, there is no formal DNR database and rules vary by province.

How do I let my doctors know of my advance directive plans?

If you have any type of advance directive, ensure the documents are kept in your medical records for your health care team. You should also ensure people who are close to you have these documents or know where your copies are kept.

It’s especially important to give these advance directives to your healthcare proxy or power of attorney.

Is my doctor required to follow my plans?

Though advance directives are legal documents, there are rare cases where a health care provider may reject them. That’s why it’s important to discuss them with your health care team while you are competent enough to do so and able to clearly communicate your wishes.

Cases where advance directives may not be followed include:

• When there is a conflict of conscience with the healthcare provider
• When the decision violates hospital or clinic policy
• When your wishes violate acceptable healthcare standards

Advance directives in Canada

In Canada, there are laws upholding the requirements of advance directives, indicating hospitals and doctors need to respect your wishes on specific healthcare outcomes, such as those outlined in the section above.

Laws around advance directives vary by province in Canada. Some provinces are further along in their end-of-life care policies than others. It’s best to consult legal advice in the province where you live in order to ensure your advance directives are valid.

As well, naming conventions vary by province, like “personal directive” in Nova Scotia; “mandate” in Quebec; and “health care directive” in Manitoba.

Medical Assistance in Dying (MAiD) is a recognized type of end-of-life care in Canada. In 2016, Canada passed federal legislation that allows eligible adults to request medical assistance in dying. MAiD cannot be legally covered under an advance directive, because only you can opt for medically-assisted death. No one can make that request on your behalf, regardless of the wishes you outlined.

Advance directives in the United States

There are many advance directive formats in the United States. Some follow forms outlined in state laws, others are created by lawyers or even the patients themselves. The validity of these documents are determined by state laws and individual court systems. But, every single state and the District of Columbia have laws about advance directives. As you prepare, take time to understand the specific requirements of writing legally sound advance directives in your state.

In 1996, Aging with Dignity, a national non-profit organization devoted to elder care and elder rights crafted Five Wishes. This is now the leading document for advance directives across the United States. It’s accepted as a legal document in 44 of the 50 states, with an additional step needed for the remaining six (Indiana, New Hampshire, Kansas, Ohio, Oregon, or Texas).

Five Wishes outlines the following, all of which are common advance directives. It’s important to note that only those that deal specifically with healthcare outcomes are legally binding.

• Who you want to make medical decisions on your behalf. Essentially, this serves as your healthcare agent, or power of attorney. This is a legal document that needs to be respected by doctors and hospitals. This person will be tasked with deciding your available healthcare options, opting for organ donation or moving you in the event your state is unable to provide your requested care.
• The medical treatment you want, or don’t want. This is another legal document. This section covers medical procedures like life support in the event you are close to death, in a coma or suffering permanent brain damage. You should also ensure you have filled out a do-not-resuscitate (DNR) form.
• Your comfort, treatment and relationships. The remainder is not legally binding but does outline your wishes for end-of-life or critical illness care in an actionable way for your healthcare agent or family. It includes things like whether you want a member of the church to visit you on your deathbed or if you prefer to die in your home.

Another important thing to note in the United States is that emergency medical personnel, such as ambulance workers, are not required to follow advance directives. Something like a DNR form, for example, needs to be presented to an Emergency Medical Technician (EMT) at the scene of the emergency, which isn’t always a possibility.

Don’t wait to plan

If you are planning for end-of-life care, or you’re suffering from a life-threatening illness, it’s essential to act now. Advance directives can only be written while you’re in control of your body and mind. If you have a specific wish for your healthcare, document it now and ensure your family and healthcare team are involved to further solidify your requests.

Sources:
http://eol.law.dal.ca/?page_id=231
https://fivewishes.org/individuals-and-families
https://www.cancer.org/treatment/finding-and-paying-for-treatment/understanding-financial-and-legal-matters/advance-directives/types-of-advance-health-care-directives.html
https://www.canada.ca/en/health-canada/services/options-decision-making-end-life.html
https://agingwithdignity.org/