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End of Life Health Decisions: How Much Control Do You Have?

End of Life Health Decisions: How Much Control Do You Have?

by ARETA LLOYD
Contributor

A person has every right to plan for their end-of-life care.

It is much easier to plan when a person has been diagnosed and knows many details of the progression of their illness. Together with his or her doctor, a patient will develop a treatment plan. If the patient is incapable, the doctor finds a substitute decision maker. Within these parameters, patients or their substitutes have the right to refuse life sustaining treatment and to sign Do Not Resuscitate (DNR) orders. Only the patient may make advance directives.

A capable patient has the right to refuse a treatment or demand a treatment be discontinued once begun, even if refusal or withdrawal results in death.

Right to Withdrawal of Life Sustaining Treatment

This is a complex area of law, especially given the recent spate of cases that have been heard by the courts. Patients, their families, substitutes and health professionals still get confused about patient’s rights in this area.

A capable patient has the right to refuse a treatment or demand a treatment be discontinued once begun, even if refusal or withdrawal results in death. Substitute decision makers may agree to withdrawal or withholding of life sustaining treatment if a doctor has deemed it futile, among other reasons.

Doctors must get consent to withdraw life sustaining treatment. A substitute may disagree with a treatment plan that includes withdrawal of life sustaining treatment. But they cannot demand any treatment they wish which has not been offered as appropriate in a treatment plan. Health professionals decide what is medically appropriate. A substitute who is a family member and comes to a consensus with other family about these issues does not always have final say on withdrawal of treatment.

All of these decisions are dealt with in the manner prescribed by the law (Health Care Consent Act), which provides for a hearing before the Consent and Capacity Board if there is any uncertainty.

Sudden Respiratory Arrest and DNRs

One of the typical discussions people have with their doctors is what to do if the person suffers a respiratory or cardiorespiratory arrest. Do they wish to be resuscitated?

A DNR order is part of a current treatment plan in which the patient expressly agreed (when capable), or a substitute decision maker consented (if the patient was incapable), that cardiopulmonary resuscitation (“CPR”) not be included in the treatment plan.

CPR is defined as an immediate application of life-saving measures to a person who has suffered sudden respiratory or cardiorespiratory arrest.

CPR is a treatment. A doctor does not have to offer it as part of a treatment plan if he or she believes it is not appropriate or is futile and should not be given. A person does not have the right to demand any treatment if it is not medically appropriate. If this is the case, it is very important to have a fulsome discussion between doctor and patient or substitute.

If a person opts for a DNR order as part of their treatment plan, it is not enough to have a DNR order signed and in their chart or by their side during a 911 call. For a DNR order to be honoured by paramedics or the fire department when responding to a 911 call, a Do Not Resuscitate Confirmation Form must be presented. The confirmation form is filled out by a medical doctor (MD), registered nurse (RN), registered nurse in the extended class (RN(EC)) or registered practical nurse (RPN). Each form has a serial number which is attached to the patient record. These forms may only be obtained from the health ministry by the designated providers. Paramedics are instructed not to accept forms without serial numbers.

The DNR confirmation form is a “durable document,” meaning it can be used for the patient as many times as necessary. There is no expiry date and the presumed expiry is the patient’s date of death, unless the patient or substitute changes their mind with respect to their treatment plan. A patient or their substitute can, even at the time of the 911 call, verbally rescind the DNR confirmation form.

Although paramedics will not administer CPR to a patient who has a valid DNR confirmation form, they will provide palliative care.

Advance Directives

Many more people are making “living wills” or “advance directives.” There is, in fact, no terminology in Ontario law defining these documents and no prescribed form. The best way to treat them is as an expression of your wishes about future care.

You must make an advance directive while you are still capable of doing so for the matters addressed therein. Only the person who is the subject of the directive can make one. No one, not even a substitute decision maker, can sign or make an advance directive on behalf of another person.

The directive does not have to be witnessed by specific persons or be in any particular format. But let’s say that you sign a document that includes your wishes and names a substitute decision maker, and that document is signed and witnessed in a manner that fulfils the requirements of powers of attorney in the Substitute Decisions Act (“SDA”). That would mean that this document is actually a power of attorney with advance directives included. However, if you write up the same document, sign it yourself, but you do not have it witnessed as per the SDA, then it is not a power of attorney and the person named cannot be the substitute. It would be treated as a statement of your wishes with respect to your future care.

Context and terminology is important. Medical advance directives are most useful when a person can make a considered decision on their treatment plan. It is far less useful to include specific wishes that can sound vague or misapprehended when a situation arises. Some people are horrified by the possibility of being resuscitated if they have a terminal illness. But between a diagnosis and finally succumbing to that illness may be quite a long road. Defining terms and using unambiguous terminology is helpful. For instance, does someone mean “terminally ill” or “terminal stage of a terminal illness”?

If a person makes an advance directive for medical care that outlines their position on specific treatments or procedures, they should have obtained the relevant information on those treatments or procedures before signing the document.

Advance directives are not advance consent to any kind of treatment or withdrawal of treatment.

Advance directives are not advance consent to any kind of treatment or withdrawal of treatment. That is, they do not replace the person’s or their substitute’s consent for health care decisions. So, for instance, a substitute cannot simply give the doctor a copy of the directive to put in a patient’s chart and instruct him or her to follow it. Advance directives remain a person’s wishes. Wishes are not binding except to the extent that they must be followed by a substitute if they apply to the particular situation. Wishes must also be honoured by a doctor in an emergency situation if the doctor knows of them. “Emergency” situation means a true emergency, when life sustaining treatment must be given immediately to forestall likely death.

A person can revoke or change their advance directive without formally executing a new document, although it is advisable. In law, later wishes, even those made orally, prevail over all other previous wishes.

Persons suffering from dementia may be understandably distraught that they will lose control over medical decisions. It may be difficult to accept that others will make those decisions for them and that their wishes, expressed in an advance directive, are not necessarily binding on their health care team. However, our system is based on the certainty provided by a properly informed and mentally competent person making his or her own decisions. The substitute decision making regime is not perfect but it was created in such a manner as to honour the concept of fluid capacity and respecting autonomy as much as possible.

It is important to give considerable thought to what information to include in an advance directive. The more information known about a certain condition, the more specific someone can be. The further away someone is from the end stage of a terminal illness, the more variables may be encountered that were never considered and thus, any specific wishes may not apply to a situation that arises. Dementia sufferers who are concerned that they will live a long time with their dementia may be best counselled to consistently communicate their values and beliefs to their substitutes in hopes of them being better able to be guided by those values as the disease progresses.

 

PLEASE NOTE: The information provided in this article is for informational purposes only. It is general information and should not be taken to be a full and accurate discussion of the law on this topic, nor is it intended to be legal advice or to be relied upon as legal advice by the reader.

If you have questions about advance directives, you may contact the author:
Areta N. Lloyd

In Association With:
Elder Law Group



About the author

Areta Lloyd

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