Advance care planning refers to the process of planning for your future care and focuses on a time when you may not be able to make certain decisions for yourself—either temporarily or permanently. It usually involves documenting your wishes with respect to personal care matters, and discussing those wishes with your substitute decision maker (SDM). Your wishes may be expressed in your power of attorney for personal care or in a letter to your SDM. The document containing your wishes is sometimes referred to as a "living will". You may also express your wishes orally.
When you are no longer capable of making personal care decisions, your wishes guide your SDM in making decisions on your behalf. They may be specific or general, often depending on your circumstances and preferences. If you do not make your wishes known, your SDM must act based on what he or she perceives to be your best interests.
This Advisory outlines the legal frameworks governing personal care decisions. It is helpful to understand these frameworks prior to planning for your future care. By doing so, you will be in a better position to prepare an advance care plan that will address your unique circumstances, needs, beliefs and wishes.
PERSONAL CARE DECISIONS (OTHER THAN HEALTH CARE DECISIONS)
Decisions regarding personal care matters, other than health care, are governed by the Substitute Decisions Act (Ontario) (the "SDA").
Under the SDA, you may plan for personal care matters relating to your nutrition, shelter, clothing, hygiene and safety. There are very few restrictions on the types of wishes you may express. However, you should avoid expressing wishes that may be impractical, such as those that are costly in relation to the size of your estate or difficult to implement.
Your wishes are important because they guide your attorney for personal care when you are no longer capable of making personal care decisions on your own. If your wishes are unknown, your attorney must act in accordance with your best interests under the SDA if you are subject to Ontario law.
Notwithstanding their critical importance, it seems that letters of wishes tend to be underutilized. Where they are used, they are often limited in scope to deal with end-of-life matters only, and not as often with a variety of non-health care matters. These matters are critical to our everyday lives, and should be considered in the formulation of any advance care plan. The following questions provide some guidance as to matters you may wish to consider and include in your unique letter of wishes:
- Do you prefer to remain in your home setting for as long as reasonably possible, as opposed to institutional care? In order to remain in your home, do you want to receive nursing and medical care in your home, such as may be provided by live-in or live-out caregivers?
- Do you have an accustomed lifestyle that you wish to be adhered to as much as possible?
- Under what circumstances would you want to reside in an institutional setting? Do you have a preference as to which ones? Do you have a geographical preference, such as one in your existing residential area or would you prefer to reside in one closer to your family or friends? What special services should be provided?
- Do you require special clothing, footwear or apparel? Do you have special hygiene or personal grooming requirements or preferences, including as to cost and service providers?
- Do you have special transportation requirements or preferences?
- Do you wish to pursue any special activities, including outings?
- Do you have any dietary preferences or restrictions?
If you have preferences with respect to any of the above matters, it is a good idea to express your wishes in a detailed manner, as opposed to relying on general statements.
As discussed in greater detail below, your substitute decision maker is not required to follow your wishes if they are not "applicable in the circumstances". This may be the case where your circumstances have changed since you expressed your wishes, or where your wishes are vague, unclear, or imprecise.
Take, for example, the following wish expressed by a person while young and healthy: "It is my wish that I remain living in my home until my death". It is likely this wish would be considered inapplicable if the person were to become totally dependent on others for his or her every need and required medical assistance that could not reasonably be provided in his or her home setting.
Instead of expressing your wishes generally, they can be tailored to your unique personal circumstances and they should contemplate various scenarios. It is important to update them as your circumstances change.
HEALTH CARE
The Health Care Consent Act (Ontario) (the "HCCA") only governs health care decisions (such as consenting to surgery), and does not apply to other personal care matters. Under the HCCA, health care practitioners must obtain your consent before administering or withdrawing treatment, except in emergency situations. If you are unable to consent due to a lack of capacity, your SDM may consent or refuse to consent on your behalf. For example, where a person is suffering from advanced dementia and is no longer capable of swallowing, a health care practitioner must obtain the consent of the person's SDM before a feeding tube may be inserted.
Your SDM is guided by any prior wishes expressed by you while capable and must follow those wishes if they are applicable in the circumstances. The following describes this framework in greater detail.
Capacity
Your SDM may only act on your behalf if you are incapable. The law presumes a person is capable to make health care decisions. Health care practitioners are entitled to rely on that presumption unless they have reasonable grounds to believe you are incapable of making a decision with respect to the proposed treatment. You will be found incapable if you are unable to understand information relevant to making a decision about the treatment or if you are unable to appreciate the reasonably foreseeable consequences of your decision. Capacity must be determined with respect to each proposed treatment. If you are found incapable with respect to one particular proposed treatment, it does not mean that you are incapable with respect to all future treatments. The following example illustrates some of the above issues.
Laura was recently diagnosed with early onset Alzheimer's disease. She often exhibits various symptoms of Alzheimer's disease, including confusion and memory loss. One day while gardening, Laura suffered a heart attack and was rushed to a hospital by her husband, George. After being examined on arrival, the emergency room physician recommended that Laura undergo emergency bypass surgery.
The stress of the situation caused Laura to become more confused than normal. The emergency room physician determined that Laura was incapable of appreciating the reasonably foreseeable consequences of consenting or refusing consent to the surgery. Consequently, George, as Laura's SDM, was asked to provide consent to the surgery on Laura's behalf, which he did.
Laura remained in the hospital for one month after surgery. Prior to leaving the hospital, it was recommended that Laura undergo a second bypass surgery. At the time the treatment was recommended, Laura's physician determined that she was capable to consent or refuse consent to the surgery. After carefully considering the advantages and disadvantages of the surgery, Laura decided not to undergo the surgery.
If a health care practitioner determines you are incapable of making a particular health care decision and you disagree with that finding, you may apply to the Ontario Consent and Capacity Board (the "CCB"), which is an independent body that adjudicates consent and capacity issues, to have the finding reviewed. Pending the outcome of the review, your health care practitioner must not administer or withdraw treatment, except in emergency situations.
Substitute Decision Making
If you are incapable, your SDM may give or refuse consent on your behalf. In making that decision, your SDM must act in accordance with any prior wishes that you expressed while capable, such as those expressed in a letter of wishes to your attorney for personal care or those expressed orally to your SDM or other person. Your wishes speak to your substitute decision maker, and not to your health care practitioners. If your SDM is unaware of any relevant wishes, he or she must act in accordance with your best interests. In determining your best interests, your SDM must consider the following:
- Your values and beliefs while you were capable;
- Any wishes you express while incapable;
- Whether treatment is likely to:
- improve your condition or well-being,
- prevent your condition or well-being from deteriorating, or
- slow the rate that your condition or well-being is likely to deteriorate;
- Whether your condition or well-being is likely to improve, remain the same, or deteriorate without the treatment;
- Whether the expected benefit outweighs the possible harm; and
- Whether a less restrictive or intrusive treatment would be as beneficial as the proposed treatment.
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The content of this article is intended to provide a general guide to the subject matter. Specialist advice should be sought about your specific circumstances.