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Planning for Incapacity: The Right Health Care Tool for You

By Wills & Estates Team (posts)

A startling number of us will experience dementia or other neurodegenerative disorders, and most of us will need at least some help with our finances and personal/health matters as we age. When this occurs, there are several legal tools to ensure your needs are met and your wishes are carried out, but advanced preparation is required. In terms of medical and personal care, these tools include Representation Agreements, Advance Directives, Living Wills, and MOST agreements. In this article we analyze the various tools, to help you determine which one is right for you.

Representation Agreement

What is it, and when is it used?

A Representation Agreement (“RA”) is the most common and most comprehensive (if prepared by a lawyer) planning tool for incapacitation. You appoint one (or more) person(s) to be your “Representative” and to help you make, or make for you, health care and personal care decisions on your behalf.

Even if you don’t need a substitute decision-maker 100% of the time, the Representative has legal authority to help you make your own decisions and be involved in your care. The RA allows health care providers to disclose information about your health to your Representatives, and give them access to your records.

Essentially, your Representative becomes your proxy, and your advocate; this is an essential part when navigating our health care system.

What happens if you don’t have one?

In emergencies, a health care provider can provide emergency health care to you. In routine situations, however, a health care provider must first select and get consent from a “temporary substitute decision-maker” (“TSDM”). The TSDM is determined by a priority list set out by statute: spouse, child, parent, sibling, grandparent, grandchild, anyone else related by birth or adoption, close friend, and person immediately related by marriage. You can see that this could result in persons being involved in your health care against your wishes.

The TSDM has no authority to make decisions about your personal care. Personal care includes where you live/with whom; your religious/spiritual practices; your activities, hobbies, and whom you associate with. Without an RA, there is a void – no one can legally make these personal care decisions for you.

Common situations where RAs are recommended/especially useful:

  • you are not comfortable with the statutory order of TSDM; in other words, where you have someone in your family/life whom you would absolutely not want to be involved. Don’t leave things to chance – make an RA to ensure they have no say;
  • you want someone to be able to help or direct your personal care decisions, and not leave those untended to;
  • for seniors who want to involve someone outside the family, or who don’t have a spouse or child;
  • a second marriage/blended family where there could be a conflict between a new spouse and the biological children; and
  • where there are strong religious or moral views on health care.

Advance Directives

Advance Directives were introduced in 2011 and allow individuals to leave binding instructions about specific types of health care that they accept or refuse. Used on its own, it is often ineffective; it is almost impossible to be specific enough about the type of care and the circumstances involved so as to allow a health care provider to confidently follow the Advance Directive.

An exception might be for something as simple and specific as “no blood products (blood transfusions), in any circumstances”.

The Advance Directive is only for medical treatment, so it leaves a deficiency in regards to personal care.

If you make an Advance Directive, it is highly recommended that you pair this with a Representation Agreement. Then, if the heath care provider determines that the Advance Directive cannot be followed (because it doesn’t perfectly fit to the circumstances at hand), your Representative can provide binding consent or refusal of treatment on your behalf, using the contents of the Advance Directive as a guide.

Living Will

A Living Will is a form of Advance Directive. It states your basic wishes about end-of-life treatment. It can be considered and should be followed at the time of your death. Again, they mostly serve as a guide, not a binding direction, because there are so many variables that it is virtually impossible to adequately express them all. Living Wills are very useful, however, to give your next of kin / family members a general idea of your values and wishes. The spectrum of end of life decisions can vary so greatly, from “do everything medically possible to keep me alive at all costs, no matter my quality of life”, to “I wish to be allowed to die naturally, without interference, and I want pain control even if it hastens my death”, that having a general sense of where you fall on the spectrum is incredibly helpful for your family.

Medical Orders for Scope of Treatment (MOST) Agreements

MOST agreements are prepared by your physician based on your discussions with your health care team. They are reviewed with your physician at least once a year and are stored in your electronic health record. These agreements tell your health care providers which level of care and intervention to provide to you. This option is best for adults with advancing illness or a chronic condition that is life-limiting or life-threatening.

We can help you determine which planning tool is best for you. Contact our Wills & Estates team to get started.

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