Advance Care Planning

What is Advance Care Planning (ACP) in Ontario?

Advance care planning (ACP) is a process of preparing a person and/or their substitute decision-maker (SDM) to make healthcare decisions in the future if necessary. ACP conversations include discussions about:

  1. Identifies the future Substitute Decision-Maker by confirming that he or she is satisfied with his or her default/automatic SDM in the hierarchy list that is in section 21 of the Health Care Consent Act OR by preparing a POA Personal Care to choose someone else to act as their SDM. [1] 
  2. Learning about any illness the person may have and considering how they may progress over time.
  3. While capable, talks with his or her future substitute decision maker about his or her “wishes”, values and beliefs about future care to prepare the SDM to make health decisions for the person when the person becomes incapable of making their own decisions. [2]  If the person is not capable, they may still express incapable wishes and values that may be of help to the SDM in the future.

What does this mean?

The automatic SDMs and the hierarchy list of SDMs are explained in more detail in another Q and A. The terms “wishes, values and beliefs” are explained in another Q and A.

The important thing to understand is that:

ACP wishes about future care are NOT decisions (informed consent) to care.   Decisions about specific care and treatment (consents) may only be made when a person understands their illness and knows the possible treatment options. Informed consent is required before treatment is provided. [3] 

When the person communicates ACP wishes, he or she is speculating about their future health and what care he or she may want or not want. The person may have some information about their health if they have a progressive illness but even then it’s impossible to have a full picture of how their illness will progress or what their future treatment options will be. ACP is still important as it helps prepare both the person and their future SDM for health decision making.

ACP wishes are not “advance consent”. ACP discussions between a person and their future SDM prepare SDMs for when the person is incapable and the SDM must step in to make the informed consent decisions for the incapable person.

ACP wishes are NOT directions to health practitioners. ACP wishes and information on the person’s values and beliefs guide the person’s future SDM when the SDM must step in to provide health decisions for that person when incapable. Until the person becomes incapable, the health practitioners must discuss any health decisions with the person even if they have engaged in advance care planning. When the person becomes incapable, the health practitioners must discuss any health decisions with the person’s SDM even if the person previously has engaged in advance care planning. [4] 

Even though the health practitioner cannot take direction from the ACP wishes, if the health practitioner is aware of the patient’s previous wishes about health care, this may help start the discussion between the health practitioner and the person making the treatment decisions whether that is the patient or the incapable patient’s SDM.

ACP wishes are NOT “goals of care”. Goals of care discussions help the health practitioner understand how the person perceives their illness as well as what they consider is quality of life. GOC are not specific treatments but from this discussion of goals, a plan of treatment may be developed. After discussing goals of treatment, the health practitioner still needs to get informed consent to a plan of treatment before providing that care. [5] 

More information on Goals of care is in another Q and A.

Only people, when mentally capable for health care decisions, can engage in ACP. SDMs cannot ACP for an incapable person. SDMs can only give or refuse consent to treatment [6]  or other health care on behalf of an incapable person.

  • [1] Health Care Consent Act, s.21
  • [2] Health Care Consent Act, s.5
  • [3] Health Care Consent Act, s.10(1)
  • [4] Health Care Consent Act, s.10(1)
  • [5] Health Care Consent Act, s.10(1)
  • [6] Health Care Consent Act, s.10(1)
Where do I find information about “Advance Care Planning” in the Ontario law?

The term “advance care planning” does not appear in the Ontario law. However the Health Care Consent Act (HCCA) and the Substitute Decisions Act (SDA) do support what has become known as “advance care planning”.  It is important to look at how ACP works under Ontario law because the law related to this issue is provincial specific and there are variations in it across Canada.

The Health Care Consent Act and Substitute Decisions Act include sections:

  • On who has to give informed consent – patient or SDM (HCCA s.10),
  • On the requirement for informed consent to come from a person (person or SDM) and not an “advance care plan” before treatment is delivered (HCCA s.10)
  • on who is an SDM  ( CCA SDM Hierarchy s.21)
  • on how to choose a particular person to be one’s SDM ( POA Personal care SDA s. 46) ,
  • on how SDMs make decisions for the incapable person ( wishes – best interests (HCCA s. 21)
  • on how wishes may be communicated by the person, when capable, to their SDM ( oral, in writing , by alternative means HCCA s. 5)
  • on how last known wishes however expressed are the wishes to be honoured

 (HCCA s. 5)

All of these sections are relevant to understanding what is advance care planning in Ontario.

Who may do Advance Care Planning?

Only a person, when mentally capable for health care decisions, and age 16 or older, may do advance care planning for themselves.[7] A SDM cannot advance care plan for a person that is incapable. Forms used in health facilities that are called “advance directives by an SDM for an incapable person “  or advance care planning documents signed by an SDM for another person are not valid. SDMs may only give or refuse informed consent on behalf of an incapable person.[8] 

The fact that only people when capable may do advance care planning makes sense in that ACP involves confirming or choosing a future SDM and communicating wishes about future care and information about a person’s own values and beliefs to a future SDM . Only the person can do this for themselves as these are personal tasks and cannot be assigned to anyone else to do.  

  • [7] Health Care Consent Act, s.5
  • [8] Health Care Consent Act, s.10(1)
May SDMs do advance care planning for a person that is incapable for health decisions?

An SDM cannot make advance care planning wishes for a person that is incapable to make their own health decisions[9]. An SDM cannot prepare and sign a Power of attorney for Personal care on behalf of a person that is incapable of preparing a POA Personal Care for themselves.[10]

SDMs may only give or refuse consent to treatment or other health care decisions on behalf of the person that is incapable for these decisions.[11]

Some of the misunderstandings about the role of SDMs related to advance care planning may be as a result of forms and policies in some health facilities, as well as from information on the internet and in other materials that make it appear that SDMs may do advance care planning for a person incapable for health care decision making.

Health facilities and organizations that have such forms and policies should review and make changes to these forms and policies to bring them into compliance with the Ontario law on health care consent and substitute decision making.   Such a review would help support health practitioners, allied health staff, as well as patients and their SDMs to engage in better patient centred care practices.

  • [9] Health Care Consent Act, s.5
  • [10] Substitute Decisions Act, s.46
  • [11] Health Care Consent Act, s.10(1)
Who takes directions from Advance Care Planning wishes?

Any advance care planning wishes, however expressed, in writing, orally or communicated by alternative means, are primarily directions to the patient’s future SDM. [12] Only in an emergency when it is not possible to get an informed consent, may a health practitioner use the wishes expressed by a patient to refuse treatment to decide on what emergency treatment should be provided to that patient.

The wishes are not directions to the health practitioners and health team taking care of the patient .The wishes are not health decisions that direct care. Wishes are not informed consents.

Wishes also should not be used by health practitioners to limit treatments options offered to the patient.

Since expressing the wishes, the patient may have changed his or her mind about what health care he or she might want. After the patient understands their current health condition, they may have different goals of care and may want different treatment options.

The health practitioners may use the previous wishes to start a conversation with the patient, but the health practitioner should not limit that conversation and should not restrict discussions to treatment options that the health practitioner thinks the patient would prefer based on their previous wishes.

  • [12] Health Care Consent Act, s.5
How does a person do Advance Care Planning?

Advance care planning wishes may be communicated in writing, orally, or in any way that the person uses to communicates , such as via a computer, picture board or other assistive device.[13] 

The only part of advance care planning that must be done in writing is the choice of an SDM if the person does not want their automatic SDM to make decisions for them when they are incapable for health decisions.[14] That must be done through the preparation of a Power of Attorney for Personal Care,

Information about the automatic SDMs and the SDM hierarchy and about how to prepare a Power of Attorney for Personal Care to choose another SDM are in other Q and As.

If a person wants to communicate their ACP wishes in a written format, they may do that in a Power of Attorney for Personal Care although any written format – a formal “form:” or just a piece of paper or computer file may be used. [15]

Written ACP wishes do not take precedent over oral wishes or wishes communicated by other means.  It is the duty of SDMs to honour the last known capable wishes of a person however communicated, even if the last known capable wishes are oral and the previous wishes are in a written format. [16]

  • [13] Health Care Consent Act .5(2)
  • [14] Substitute Decisions Act, s.46
  • [15] Health Care Consent Act, s.5(2)
  • [16] Health Care Consent Act, s 5(3)
Do Advance Care Planning wishes need to be in writing to be valid?

No. Advance care planning wishes may be communicated in writing, orally, or in any way that the person uses to communicates, such as via a computer, picture board or other assistive device. Oral wishes or wishes communicated by other means are as valid as written wishes.[17]

In fact, later oral wishes or wishes communicated by other means will override earlier written wishes.  

The only part of advance care planning that must be done in writing is the choice of an SDM if the person does not want their automatic SDM to make decisions for them when they are incapable for health decisions. That must be done through the preparation of a Power of Attorney for Personal Care.[18] 

  • [17] Health Care Consent Act, s.5(2)
  • [18] Substitute Decisions Act, s.46
Is it better to put Advance Care Planning wishes in writing?

It is not necessarily better to put ACP wishes in writing because ACP wishes may also be communicated orally or by other means. In fact later oral wishes or wishes communicated by other means will override earlier written wishes[19].  

Whether to put ACP wishes in writing is a personal choice.

Some people want to put their wishes in writing because they think that will be most helpful to their SDM. They think the SDM may have a better understanding of what they meant by their wish if they write it down. If it is in writing, the SDM can refer back to it when making decisions for the person when incapable.

If the person anticipates that other family and friends, who are not the SDM, may challenge the SDM over decisions that the SDM will need to make for the person when incapable, putting the wishes in writing may help the SDM to justify these decisions.  The written format would be direct evidence that the person when capable did express the wishes.

If a person decides to put their ACP wishes in writing, he or she must remember that if they change their wishes, they should also change the written form. Although later oral wishes will override the earlier written wishes, to avoid confusion, the written wishes should also be changed.

Also, if a person puts the wishes in writing, he or she should still discuss these wishes with their future SDM to make certain that the SDM understands what the wishes mean. The person making the wishes may think the wish is obvious and easy to understand but in fact the SDM may have a different interpretation of the written wish.

However a person expresses ACP wishes, he or she should make sure that they and their future SDM have a common understanding of the wishes.

  • [19] Health Care Consent Act, s.5
What is an advance directive or living will?

THERE IS NO REFERENCE IN THE HEALTH CARE CONSENT ACT OR SUBSTITUTE DECISIONS ACT TO “ADVANCE DIRECTIVES” OR “LIVING WILLS”. “ADVANCE DIRECTIVES” AND “LIVING WILLS” ARE THE NAMES OF DOCUMENTS DESCRIBED IN THE LAW IN OTHER JURISDICTIONS (I.E., OTHER PROVINCES, US STATES). THESE TERMS ARE USED IN COMMON LANGUAGE IN ONTARIO TO DESCRIBE ANY DOCUMENTS IN WHICH A PERSON WRITES DOWN THEIR WISHES FOR FUTURE HEALTH CARE,

THE HEALTH CARE CONSENT ACT DOES INCLUDE A SECTION ABOUT WISHES. IT STATES THAT A
A  PERSON MAY, WHILE CAPABLE, EXPRESS WISHES WITH RESPECT TO TREATMENT, ADMISSION TO A CARE FACILITY OR A PERSONAL ASSISTANCE SERVICE.[20]   WISHES MAY BE EXPRESSED IN WRITING IN A POWER OF ATTORNEY FOR PERSONAL CARE OR IN ANY OTHER WRITTEN FORM, OR MAY BE EXPRESSED ORALLY OR COMMUNICATED BY ANY MEANS THAT THE PERSON USES TO COMMUNICATE SUCH AS THROUGH ASSISTIVE DEVICES.[21] LATER WISHES EXPRESSED WHILE CAPABLE PREVAIL OVER EARLIER WISHES.[22] 

THE SUBSTITUTE DECISIONS ACT DOES REFER TO POWERS OF ATTORNEY FOR PERSONAL CARE[23] WHICH ARE DOCUMENTS THAT A PERSON MAY USE TO APPOINT SOMEONE, KNOWN AS THEIR ATTORNEY, TO MAKE PERSONAL CARE DECISIONS FOR THEM IF THAT PERSON BECOMES INCAPABLE FOR PERSONAL CARE DECISIONS. PERSONAL CARE DECISIONS INCLUDE DECISIONS ABOUT HEALTH CARE, SHELTER, NUTRITION, HYGIENE, CLOTHING AND SAFETY. [24]

 

THE TERMS “ADVANCE DIRECTIVE” AND “LIVING WILL” SHOULD NOT BE USED IN ONTARIO BECAUSE THERE IS NO REFERENCE IN THE LAW TO SUCH DOCUMENTS AND THE USE OF THESE TERMS CAUSES CONFUSION.

THERE ARE DOCUMENTS, KNOWN AS DIRECTIVES, USED IN THE HEALTH SYSTEM THAT ARE AUTHORITATIVE AND THAT GIVE DIRECTIONS TO HEALTH PRACTITIONERS WHEN PROVIDING CERTAIN TYPES OF CARE.  IN CONTRAST ADVANCE CARE PLANNING WISHES AND INFORMATION IN THESE “ADVANCE DIRECTIVES” AND LIVING WILLS” ARE NOT DIRECTIONS TO A HEALTH PRACTITIONER BUT ARE COMMUNICATIONS TO THE PATIENT’S FUTURE SDM TO BE USED BY THAT SDM WHEN GIVING OR REFUSING CONSENT ON BEHALF OF THE INCAPABLE PATIENT.

By using the terminology in the Health Care Consent Act it should increase understanding about ACP as it is done in Ontario and reduce confusion about who takes direction from ACP wishes.

  • [20] Health Care Consent Act ,s. 5(1)
  • [21] Health Care Consent Act, s. 5(2)
  • [22] Health Care Consent Act, s. 5(3)
  • [23] Substitute Decisions Act, s.46
  • [24] Substitute Decisions Act, s.45
 
What are ACP “wishes”?

When a person is advance care planning, that person has an opportunity to communicate their “wishes” about future care to prepare their SDM for the SDM’s future role as decision maker for the person. What are ACP “wishes”?

Wishes are NOT decisions and are not informed consents.  Wishes are not directions to the health practitioners or to others providing care to a person.  Only in an emergency, when it’s not possible to get an informed consent to treatment, if the health practitioner knows of any wishes expressed by the person when capable to refuse a treatment, the health practitioner may honour that wish when deciding on what emergency care to give to that person.[25] Otherwise, the health practitioner must get an informed consent from a person or an incapable person SDM despite knowledge of a “wish” about care. [26]

The word “wishes” in the Health Care Consent Act refers to wishes about treatment, admission to long term care, and personal assistance services (HCCA S. 5). Treatment, admission to long term care and personal assistance services are all types of health care. These terms are explained in another Q and A.

Wishes do not need to be about specific treatments or care options although a person could do that.  A person could express a wish that they would never want to have a specific type of treatment (tube feeding, CPR, certain medications etc.) or a specific type of care (a wish never to live in a long term care home, a wish to be able to die at home).

Wishes also may also be statements about what the person thinks of as quality of life and what makes life worth living. Wishes may include communications to the future SDM about what the person thinks is important (prolonging life even if living with some limitations; being able to communicate with family; having food and drink even if artificial nutrition would prolong life). The person may communicate how they do a risk-benefit analysis when making health decisions and ask that the SDM try to do the same type of analysis when the SDM steps into the decision making role.

Wishes may also be expressed to the SDM to consider the person’s values and beliefs held by that person when capable, when considering care options and treatments.  The values and beliefs may be from a particular faith or religion or may be opinions of that person about the value of life and how life should be lived. Values and beliefs usually affect how a person sets priorities in their life are the measures that the person uses to determine if their life is being lived in the way they want to live it.

When expressing wishes about future care, the person must understand that he or she cannot fully anticipate what their health might be in the future or how they will experience a particular health problem. Also treatment options change as science advances so what would be a treatment that the person is convinced that they would not want might be a treatment that the person would have consented to if still capable and had all the information to make an informed decision.

If a person has a progressive disorder, they may have a better understanding of the trajectory of their illness but even then it’s not possible to predict everything that might happen.

When making wishes about future health care as part of advance care planning, the person needs to understand the principles that their SDM must follow when making substitute decisions. Understanding these principles of honouring the persons wishes expressed when capable and acting in the incapable person’s “best interests” when wishes are not known or are impossible to honour will help a person do better advance care planning and better prepare their SDM for this future decision making role. How an SDM is required to make decisions for an incapable person is explained in another Q and A.

ACP wishes are NOT “goals of care”. Goals of care discussions help the health practitioner understand how the person perceives their illness as well as what they consider is quality of life. GOC are not specific treatments but from this discussion of goals, a plan of treatment may be developed. The health practitioner then needs to get informed consent to that plan of treatment before providing that care. More information on Goals of care is in another Q and A.

Only capable persons can engage in ACP. SDMs cannot ACP for an incapable person. SDMs can only give or refuse consent to treatment or other health care on behalf of an incapable person.

  • [25] Health Care Consent Act, s26.
  • [26] Health Care Consent Act, s. 10(1)
How do SDMs make health care decisions for a person when that person is incapable?

The SDM is required to honour the person’s capable wishes when making health decisions for that person when he or she is incapable. How the SDM honours a person’s capable wishes is explained in another Q and A.

There are two exceptions to this rule about following the wishes:

a. If the wish is impossible to honour (HCCA s.21(2)) then the SDM does not need to try to follow it but instead must determine what is in the “best interests” of the incapable person and make decisions using that best interest standard.  “Best interests” is explained in another Q and A.  

b. if the wish directed the SDM to refuse consent to a treatment or any other type of health care, the substitute decision-maker or the person’s health practitioner may apply to the Consent and Capacity Board for permission to consent to the treatment despite the wish.[27] The Consent and Capacity Board may give permission for the SDM to consent to the treatment despite the wish if it is satisfied that the incapable person, if capable, would probably give consent because the likely result of the treatment is significantly better than would have been anticipated at the time the wish was expressed. This application to the Consent and Capacity Board is explained in another Q and A.

  • [27] Health Care Consent Act,  s.36
 
How does a SDM “honour” the wishes of an incapable person about health care when making decisions for the incapable person?

The SDM is required to make decisions for an incapable person by following or “honouring” the wishes about health care,[28] made by the person when capable, but that may be a challenging task. It’s unlikely the person when capable had communicated wishes about every possible health decision that might need to be made after that person became incapable.

Some wishes also may be broad in scope and not specific, such as wishes for “no heroic measures” if the person is at end of life.  General wishes, although not specific to a treatment or type of care, such as wishes that express what the person thinks of as quality of life may help the SDM to determine what to do when making a specific decision.

The SDM has to apply the wishes when making decisions but also has to interpret what the person meant by the wish.  What a wish means may not be that obvious except to a person, like the SDM, that knew the person when he or she was capable.

Before applying the wishes and making a decision for the incapable person, the SDM must determine:

  • whether the wishes of the person were expressed when the person was capable (and were expressed voluntarily);
  • whether the wishes are the last known capable wishes of the person;
  • what the person meant by the wish;
  • whether the wishes are applicable to the particular decision at hand;

    and,

  • If there are no applicable capable wishes, how the patient’s values, beliefs, and incapable/inapplicable wishes would apply to the patient’s best interests

  • [28] Health Care Consent Act, s. 21(1)
May forms used in advance care planning, goals of care, and health care consent developed in other provinces or in national or international research projects be used in Ontario?

Forms for advance care planning, goals of care and health care consent developed in other provinces or in national or international research projects should NOT be used in Ontario UNLESS the forms have been checked as to whether they reflect Ontario law related to ACP, GOC and health care consent and modified appropriately if necessary.

A research paper commissioned by the Law Commission of Ontario on forms, policies and practices used in Ontario health facilities for advance care planning , goals of care,  and health care consent[29] found that many health facilities and organizations were using forms, policies, and practice systems from other jurisdictions without adaptation  to comply with Ontario law.  This results in practices that are not patient centred, and that do not respect patients/SDM’s rights in health decision making. This also could expose health practitioners to claims for damages and claims of professional misconduct for failure to get informed consent before providing treatment.

There may be great value in the forms and systems developed in other jurisdictions and in research studies despite the fact that these do not reflect Ontario law.  That work needs to be put into the context of the Ontario legal framework and could be ADAPTED to fit into that framework although NOT DIRECTLY ADOPTED or implemented in Ontario without the necessary changes.

  • [29] Health Care Consent, Advance Care Planning, and Goals Of Care Practice Tools: The Challenge To Get It Right, December 2016 , Judith A. Wahl,  Mary Jane Dykeman, Tara Walton    https://www.lco-cdo.org/wp-content/uploads/2010/10/ACE%20DDO%20Walton%20Formatted%20Dec%202%2C2016%20LCO.pdf
May a health facility, such as a hospital or long term care home, require a person to use a particular form to write down their wishes about future care?

Health facilities cannot require patients to use particular forms to write down their wishes about future care.  

Doing advance care planning is voluntary. No one needs to express their wishes about future care to anyone although it would be helpful to do this, particularly in order to prepare a person’s SDM for their future decision making responsibilities. Health facilities and health practitioners need to get informed consent before treatment and this can be done even if a person has not engaged in any advance care planning.

No health facility or health service may require a person to prepare a POA Personal Care to appoint someone as their attorney (SDM). The Health Care Consent Act includes an SDM Hierarchy that ensures that everyone in Ontario has an automatic SDM even if they have never prepared a POA Personal Care.

ACP wishes do not need to be written down to be valid. Patients may express ACP wishes, in writing, orally, or communicate these by whatever means that persons use to communicate such as through an assistive device.[30] Health facilities cannot require a person to put their wishes in writing.

Although health facilities cannot require patients to use particular ACP forms or to write down their wishes about future care, health facilities may create forms about advance care planning that may be used to promote advance care planning and inform patients about the requirement for informed consent and how ACP relates to health care consent.  The form completion by the patient would remain optional.

The forms may support good practice.   Forms may help patients understand who would be their future SDM, how SDMs make decisions for them and about the value of the patient talking with their future SDM about their wishes for future care. .Patients may voluntarily agree to use a facility form to write down their wishes or may provide their wishes about future care to staff in other forms or formats.

If health facilities are using any forms to help engage patients in ACP, they need to check that the forms reflect Ontario law, include the right SDM hierarchy list from the Health Care Consent Act, are clear that the wishes even if written down are not consents, and are clear that staff do not take direction for care of the patient from the recorded wishes.

  • [30] Health Care Consent Act, s.5
Who should help patients do advance care planning? Does it need to be a regulated health practitioner?

Health practitioners are encouraged to tell their patient’s about advance care planning as well as to engage in such discussions with patients and the patient’s future SDMs.  However many busy health practitioners question whether they have the time and resources to do this effectively.

There is medical and health literature that detail the benefits to the health system, to patients and their families, and to health practices if patients engage in advance care planning.  By doing advance care planning, there may be savings in time and money and a reduction of conflicts and family disputes about decision-making for an incapable patient.

What does the law state about who should do specific tasks related to ACP and consent?

The law does require the health practitioner offering treatment:

  • to get the informed consent before treatment,[31]
  • to determine whether the patient is capable to provide that consent [32]
  • to determine who is the incapable patient’s SDM, [33]
  • to explain to the SDM their duty to make decisions for the patient by honouring the patient’s previous capable wishes or acting in the nest interests of the patient. [34]

More details on what is involved in getting informed consent and what must be communicated by the health practitioner to the patient or SDM is explained in other Q and As. Also other Q and As detail whether any of these obligations may be delegated to another health practitioner or person although the health practitioner is responsible.

In respect to tasks related to advance care planning discussions, the law does not specifically place an obligation on any particular person to explain to a patient that they can express wishes about future care and to inform them that that their SDMs would make decisions for them when incapable although this would be of great benefit to a patient to know.

The law also doesn’t place a specific obligation on anyone to explain to the patient that the SDM is required to follow their capable wishes when making decisions for them and that if wishes are not know that the SDM then must make decisions in their best interests.  This is in contrast to the legal requirement placed on health practitioner to explain to SDMs these principles of substitute decision making (wishes-best interests).

The law also doesn’t specify how some tasks need to be done. Do certain tasks need to be done through discussions whereas some information may be conveyed through written materials, posters, audio and video clips?

Could certain tasks, such as the asking the patient who would be a patient’s future SDM be incorporated into administrative procedures?  

Assuming there is a benefit to the health practitioner, the patients and the SDMs, and to the health system to have everyone be more knowledgeable about advance care planning and health care consent, health practitioners and persons responsible for health systems management should think about the various elements of both health care consent and advance care planning and determine which tasks should be done by which people in a health practice, health facility or health service.  

Who should do what tasks and the best way of doing those tasks related to health care consent and advance care planning is too complex to answer in a simple Q and A.  

This question should alert health practitioners and health systems managers that attention should be paid to thinking through how information on advance care planning and health care consent should be communicated in the health system and in health services.  

This is a more complex issue than it may appear on the surface and good advance care planning and good consent practices involve a variety of health practitioners, allied health and others.  It is critical to understand how advance care planning is related to the requirement for informed consent before designing programmes on advance care planning. Any programmes on advance care planning or health care consent need to be reviewed to ensure that these are compliant with Ontario law before being used.

The relationship between ACP and health care consent is explained in another Q and A.

  • [31] Health Care Consent Act, s.10(1)
  • [32] Health Care Consent Act, s.10(1)
  • [33] Health Care Consent Act, s.10(1)
  • [34] M. (A.) v. Benes, 1999 CanLII 3807 (ON CA).
 
What is a Level of Care form? Is it consent? Is it an Advance Care Planning document?

Level of care (LOC)  forms are forms that have been used primarily in long term care homes, and some hospitals, to record general statements about what a resident would want in the event of a sudden change in their present condition. By having these forms in a resident’s chart it is assumed that health staff use these forms to determine what care to provide to the residents.

The LOC forms include tick boxes that list care options in four or five levels, from full care with resuscitation (full code) to lesser degrees of intervention, the lowest level being “comfort care only”. The levels often also often include statements about whether or not a resident would want transfer to hospital or care only at the long term care home and no transfer to hospital.

These forms are not consents to treatments as they are not specific to any treatments and not specific to the individual patient and their particular health condition. Level of care forms are usually not discussed in detail with patients before completion and are too often completed by the patient or the patient's SDM (whether or not the patient is incapable of treatment decision-making) without a prior explanation of the patient's present health condition or the way the completed form will be used by the health team members. LOC forms leave it up to the health practitioners to decide what specific care and treatments that the patient should receive based on a generalized direction.

These forms do not assist health practitioners in fulfilling their duty to get an informed consent to specific treatments from the right person, the resident or the incapable residents SDM. The forms may mislead the health practitioners in thinking that consent has been obtained to no CPR or to other treatments.

Although often referred to as “advance care planning documents” by many long term care homes, there is a serious question about whether the execution of these forms is a valid expression of a resident’s “wishes” for use by health practitioners in an emergency. The value for that purpose would depend on whether the resident was given information on how the LOC form would be used.

The forms as usually drafted give little guidance to the resident’s SDM when the SDM is called upon to make decisions for the resident when incapable because the forms are so broadly worded.  Completion of these forms may not be discussed with the resident and SDM together so they may have different understandings of what the form content means.

Often the form is presented as “required” by the long term care home although any advance care planning should be voluntary. In some cases residents that want to have their wishes recorded in their chart using different forms that they found more meaningful to themselves and their SDM, are told that only the facility form may be used.

These forms have also been misused to not transfer a resident to a hospital for treatment just because the form section on no transfer was ticked off.

It is not possible to give a blanket direction about transfer to hospital in advance of a health incident.

Although a resident may express that if at end of life they would not want to be transferred to hospital and would prefer that the long term care home be their place of death, they might want transfer to hospital to receive treatments for injuries or illnesses that may not be able to be treated at the long term care home, with return to the long term care home post treatment.

The decision of transfer or not to hospital must be specific to the needs of the patient at the time that transfer is considered and cannot be a blanket direction

The wishes on level of care forms should not be driving the care provided to residents. Although some LOC forms correctly state that wishes expressed are not consent to treatment, it would appear that LOC forms are used as consents or used to limit treatment options because health care staff and health practitioners in those homes assume that these forms record consents.

The alternative to LOC forms is changing practices to ensure that plans of treatments are developed for all residents that include treatments such as CPR/ No CPR and that informed consent is obtained for all treatments and plans of treatments.

Is ACP only about end of life care?

Advance care planning is not just about end of life care.

Any adult (age 16 or older) needs to understand who would be their SDM if he or she was not able to provide their own consents to health care. All adults have the right to choose someone to be their SDM if they want someone other than their automatic SDM as in the SDM hierarchy in the Health Care Consent Act.[35] 

Advance care planning wishes may be about anything related to health care and may include information about the person’s value and beliefs that influence how they may decisions about health care. The advance care planning wishes are not limited to health care and values and beliefs about health care just at end of life. [36]

Advance care planning wishes are expressed to help prepare the person’s SDM to make decisions for the person whenever that person may lack capacity to make health care decisions and needs a SDM. That need may arise at any time over the course of a person life.

  • [35] Health Care Consent Act, s.20
  • [36] Health Care Consent Act, s.5
How does health care consent relate to Advance Care Planning?

Advance care planning and health care consent are closely related. Advance care planning is done to help the patient and their SDM understand the health practitioner’s duty to get consent before treatment from the patient if capable and how the patient can prepare for an SDM to give or refuse that consent if the patient should become incapable.

Health care practitioners must always obtain informed consent or refusal of consent from either the mentally capable patient or their substitute decision maker (SDM) before providing treatment [37]

Advance care planning is done to prepare the patient’s future SDM to give or refuse consent to health care on behalf of the patient if the patient is not capable to speak for themselves at some future date. ACP is done to support better decision-making for the patient in the consent process.

A summary of what patients, SDMs, and health practitioners need to know about advance care planning and health care consent to understand this connection is as follows:

  • there is a  requirement for health practitioners to get an informed consent from before any treatment is provided
  • a patient is their own decision maker if capable[38] 
  • the health practitioner must turn to the person’s SDM for any health decisions
    if the patient is incapable for a health decision [39]
  • the patient has an automatic SDM by law even if he or she has done no advance care planning. If the patient  wants another person to be their health decision maker then they must prepare a POA Personal care [40]
  • the patient can prepare their future SDM (SDMs) to make decisions for them by talking with the SDM about the patients  “wishes, values, beliefs”[41] that affect how the patient makes their own health decisions. These conversations are to help the future SDM “step into the shoes” of the patient when the SDM has to make decisions for that patient.
  • ACP wishes don’t have to be specific statements about treatments the person would want or not want. It is often not possible to give specific directions about specific treatments because it is hard to predict exactly what health problems a person may have in the future. ACP wishes are not advance health decisions but are information that will be used by the patient’s SDM to make health decisions for that person should the person becomes incapable.
  • By having conversations with their future SDM, the person is helping the SDM understand how the person makes their own health decisions – what is important to them in their own life, what is quality of life. The conversations are to help prepare the SDM to be confident in the decisions they may have to make for the person when incapable.
  • When the SDM is required to step in and make decisions for the person, the SDM is required to honour the wishes, values and beliefs of that person expressed to the SDM when the person was capable. The SDM must apply the person’s wishes values and beliefs when considering what decisions to make for that person[42].
  • If the SDM is not aware of wishes that are applicable to the particular decision to be made then the SDM is required to act in the best interests of the person [43]
  • Best interests involves the SDM considering the values and beliefs that the SDM knows the incapable person held when capable and believes he or she would still act on if capable as well as considering whether the incapable person’s condition or well-being is likely to improve, remain the same or deteriorate without the treatment. Best interests include weighing the risks and benefits of the treatment options.
  • SDMs do not have to follow a wish that is impossible to honour. For example, a person may communicate to their future SDM that they want to live in their own home and not a long term care home or that they want to die in their own home but these types of wishes may be impossible to honour depending on the actual state of health of the person, their care needs, the availability of public and private home care, the person’s financial resources, and the availability of family and others to care for the person in their own home.
  • [37] Health Care Consent Act, s.10(1)
  • [38] Health Care Consent Act, s.10(1)
  • [39] Health Care Consent Act, s.10(1)
  • [40] Health Care Consent Act, s.20
  • [41] Health Care Consent Act, s.5
  • [42] Health Care Consent Act, s.21(1)
  • [43] Health Care Consent Act, s.21(2)
Are ACP wishes the same as informed consents to treatment?

Consents to treatment[44] are decisions made by a patient when capable or the incapable patient’s SDM after a health practitioner has provided the patient or the SDM with information about the patient’s current health condition and the risks, benefits, side effects of any proposed treatments, alternatives to these treatments and what would happen if the treatments offered were refused.

In contrast ACP wishes[45] about future care are NOT decisions (informed consent) to treatments or care.  When a person communicates ACP wishes, he or she is thinking about what their health condition may be in the future and what health care they may or may not want. When a person expresses advance care planning wishes, he or she does not yet know what their health condition will be, or what care options might be available.

ACP wishes are not “advance consent”.  Consent can only be given after a person has all the information to make a decision. This cannot be done in advance.

ACP discussions between a person and their future SDM prepare SDMs for when the person is incapable and the SDM must step in to make the informed consent decisions for the incapable person.  

Before making a decision on behalf of the incapable person, the SDM must be given the same information that the patient would have been given if still capable about the patient’s current condition and treatments options.[46] The SDM then uses the advance care planning wishes and their knowledge of the patient’s values and beliefs to then make a decision on behalf of the patient, The SDM applies that information from the ACP process to inform their decisions on behalf of the patient.

  • [44] Health Care Consent Act, s.11
  • [45] Health Care Consent Act, s.5
  • [46] Health Care Consent Act, s.22

Resource Guide Overview

Consent

Substitute Decision Maker(s)

Advance Care Planning