This section provides a primer on the principle of patient autonomy and how it relates to the issues raised in the Paper, then gives some real world examples of advance care planning. Our goal in this section is to explain some of the issues, interests and concerns underpinning the law in Ontario, and to provide context for how health care consent and advance care planning relate in practice.
We have also prepared a glossary of key terms, which can be found at the end of this Paper.
A. Balancing both sides of patient autonomy: informed consent and future care wishes
At a high level, Ontario’s legislative scheme governing health care consent and substitute decision-making focuses on balancing the principle of patient autonomy with the need to protect incapable patients.
The genesis of both the SDA and the HCCA can be traced back to the draft legislation prepared by the Advisory Committee on Substitute Decision- Making for Mentally Incapable Persons chaired by Stephen V. Fram, Q.C. The final report of this committee (the “Fram Report”) was released in 1988. The Fram Report noted the conflict between patient autonomy and substitute decision-making, and recommended a model of least restrictive substitute decision-making for incapable adults. The Fram Report also noted a concern that unfettered resort to substitute decision-making would be paternalistic.
Much has been written on the balance between individual self-determination and substitute decision-making. This balance is not the focus of this Paper. Instead, this Paper focuses squarely on the principle of patient autonomy, and on how the two sides of this principle occasionally come into tension.
Patient autonomy is, broadly speaking, the right of individuals to make decisions about their own bodies. As the Fram Report noted, “The traditional democratic concept of liberty involves letting people live as they choose or wish, without interference, so long as they do not break the law or endanger others.”
Courts have held that patient autonomy entails a right to be informed of the risks and benefits of treatment before lawful consent can be given. This is referred to as the doctrine of informed consent, and is fundamentally founded on the idea that capable patients should be given relevant information to make choices about their own well-being. However, patients also have a right to express wishes about the health care they will receive in the future if they become incapable, and to have those wishes complied with in certain circumstances. This aspect of patient autonomy entails a right to pre-plan for future health care, and a limited right to have such plans followed.
Tensions may arise where a patient has expressed a relatively uninformed wish about future health care. For example, a patient may express a wish to receive a particular end-of-life treatment. This wish may be expressed in a factual vacuum, well prior to a relevant diagnosis, and without being given any information about this treatment from a health practitioner (as would be required by law if informed consent were being sought). When a health practitioner is later informed of such a wish having been made at a time prior to the patient’s current incapacity, and the health practitioner is now proposing the particular treatment, what is he/she to do? On one hand, the health practitioner has an obligation to obtain informed consent to treatment – which can no longer be obtained from the patient because they are incapable. On the other hand, patients have a limited right to direct their future care and the physician may be under an obligation to comply with the prior expressed wish.
The common law of Ontario has never provided complete guidance on resolving this tension. The Fram Report did not address changes to the law of informed consent, but instead assumed that the common law of informed consent would continue to apply and recommended transferring the existing requirement to give informed consent from the incapable patient to the SDM. However, the Fram Report also recommended that SDMs be required to make authentic decisions and follow the “intentions” of the incapable patient. Unfortunately, no guidance was provided in the Fram Report on how to address potential tensions between the principle that consent must be informed and the obligation on the SDM to follow the “intentions” of the patient (although mechanisms exist in the HCCA to address these tensions, discussed below).
The Fram Report’s recommendation to transfer decision-making authority to an SDM where the patient is incapable was incorporated in the HCCA, and its predecessor legislation. Under the HCCA, the SDM’s role is to give or refuse informed consent on behalf of the incapable patient, and while doing so give effect to the patient’s prior capable wishes. The SDM’s role is to connect informed consent to treatment with the patient’s future care wishes: informed consent is still obtained, but in giving or refusing consent the SDM must determine whether the patient’s prior expressed wishes are applicable. This is how Ontario legislative scheme balances the patient’s right to direct future care with the requirement of informed consent.
Not all jurisdictions have reached the same conclusion as Ontario on how to balance informed consent with the limited right to direct future care. British Columbia chose to legislatively remove the obligation to obtain informed consent where a health practitioner is presented with patient instructions about future care in an advance directive. Thus in B.C. no balancing is required, no tension arises, and the health practitioner may simply provide or withhold the treatment regardless of whether the advance directive was informed. The health practitioner is not required to obtain a separate informed consent from an SDM.
Readers of this paper should keep this tension, and Ontario’s legislative solution, in mind. Our attempt to find the correct balance between the right of capable patients to direct their future health care, and the right of capable adults to make informed choices, weaves together many of the divergent discussions and critiques presented in this Paper.
We should note that, while advance care planning is conceptually grounded in patient autonomy, current practices in Ontario do not always further this principle. Where a patient expresses wishes about future care without being informed of useful clinical information, and is not given the opportunity to revisit such wishes when the patient’s health condition changes, it is difficult to see how the principle of patient autonomy is being advanced. More emphasis on obtaining informed consent to a plan of treatment would mitigate this concern somewhat, as discussed below.
B. What kind of future care wishes should be solicited?
Closely related to the tension between informed consent and advance directives is the issue of what types of wishes about health care should be solicited from patients. This is a practical question addressing how best to connect treatment decisions with a patient’s wishes, values and beliefs, and asks what will be most useful and informative to:
(a) SDMs in deciding whether to give or refuse informed consent to treatment on behalf of incapable patients; and,
(b) health practitioners in deciding whether to provide treatment to incapable patients in emergencies.
Most importantly, this is a question regarding what types of health care wishes will engender the most authentic decision-making possible. ‘Authentic’ refers to how closely a decision of an SDM (or health practitioner in an emergency) reflects the decision the patient would have made if capable.
We acknowledge that this is largely a question for health care researchers to resolve with the benefit of evidence-based research. Such research is beyond the scope of this Paper. However, as is discussed in this Paper, we do have concerns about the types of wishes that are being solicited from patients in Ontario.
Some of the documents reviewed in preparing this Paper appear to encourage low-quality and uninformed, yet very specific, expressions of prior capable wishes. For example, they encourage the general public to express absolute wishes about dialysis, mechanical ventilation, and cardio-pulmonary resuscitation (“CPR”). They attempt to collect these wishes in the abstract, without contextualizing them within the actual health condition (and likely future health condition) of the patient. This raises concerns that SDMs either will be, or will believe themselves to be, bound to make a decision in accordance with a relatively uninformed wish.
Some of the definitions of standard end-of-life treatments provided to patients in the documents we have reviewed, while not entirely inaccurate, are potentially inadequate. For example, in order to express a useful wish to receive or reject a feeding tube, a patient should be aware that this would involve the placement of a tube in the nose or abdomen. Similarly, it is difficult to imagine that a patient could express a robust wish about CPR without recognizing that chest compressions may result in numerous broken ribs. Yet, some of the documents we reviewed ask individual patients to give these specific wishes absent this knowledge, leaving a significant information gap that health practitioners may or may not adequately fill in discussions with the patient.
The prevalence of advance care planning documents containing specific yet limited information risks encouraging low-quality expressions of future care wishes by patients. In the authors’ view, it would be preferable to solicit values-based and less treatment-specific wishes to be interpreted by SDMs, rather than individual wishes about each treatment option.
We recognize that there are circumstances where categorical wishes about particular treatments will authentically reflect the decision the patient would make if capable. For example, some religious groups, such as Jehovah’s Witnesses, reject human blood products regardless of the particular circumstances. However, our concern is that categorical wishes are being requested from patients whose decisions, if capable, in the future when treatment is proposed would be more flexible (meaning that patients’ wishes may shift depending on the particular circumstances and the information provided by health practitioners in the future).
C. Typical advance care planning wishes
The spectrum of potentially expressed wishes about future health care is obviously very broad. Patient wishes potentially touch on almost every treatment and environment in which health care decisions are made. For the benefit of the reader, we wanted to provide some common real world examples of the types of wishes about future care that are solicited from patients by health practitioners.
Perhaps the most common, and most publically known, type of advance care planning is a wish to not be resuscitated in the event that the patient experiences a respiratory or cardiac arrest. This is commonly shortened to a Do-Not-Resuscitate (DNR) instruction. Resuscitation will generally involve the use of CPR. A prominent educational program for future physicians contains the following suggested description of CPR for use with patients in advance care planning conversations:
If your heart was to stop, you would die. A medical team or emergency paramedic team would use electric shocks to restart your heart. Even with CPR, unfortunately, the blood flow to your body is not as good as if your heart was still beating. The longer it takes to restart your heart, the more damage will occur. The sicker you are before, the less likely they are to be able to restart your heart at all.
The biggest thing to worry about is damage to your brain. If your heart cannot be restarted quickly, brain damage will occur. This brain damage can be mild, yet it is often significant and can range from loss of memory to being permanently unconscious and chronically dependent on others to help with day-to-day activities.
Within minutes of starting CPR, to increase chances of success, a tube would be put through your mouth into your windpipe to breathe for you since you would not be breathing. This is not an easy procedure and sometimes it is not successful. If your heart starts beating again, you will need to be on life support afterwards. How long you would be on life support is not clear.
In the experience of the authors, discussions about whether the patient wishes to be resuscitated are usually solicited by health practitioners on, or shortly after, admission to any health care organization – such as a hospital or long-term care home. Unfortunately, these resuscitation discussions do not always involve transmission of the above detailed information on CPR.
Another common future care wish solicited from patients, particularly elderly long-term care home residents, relates to the “level-of-care” the resident wishes to receive. Such “level-of-care” discussions usually ask a patient or resident to select between three or four pre-selected categories of health care interventions. An example of a level-of-care form, obtained through our survey of institutional policies, provides the following options and explanations:
- Level One – Supportive/Comfort Care
This includes, but is not limited to, the provision of measures available within the resources of the facility such as:
- Relief of pain;
- Oral fluids;
- Mouth care;
- Treatment of fever;
- Oxygen administration (if available);
Diagnostic interventions and transfer to hospital will not normally be utilized for residents who request this level of Advance Directives. No cardiopulmonary resuscitation is requested.
- Level Two – Limited Therapeutic Care
Care measures will include all procedures utilized in Supportive/Comfort Care as well as the administration of antibiotics if indicated. Transfer to hospital may be arranged to provide comfort/treatment measures beyond the capability of the facility upon the direction of and at the discretion of the physician. No cardiopulmonary resuscitation is requested.
- Level Three – Transfer to Acute Care Hospital
If symptoms indicate, the resident would be transferred to an acute care hospital for treatment. Assessment would be made in the acute care hospital emergency department and a decision made whether to admit the resident or return him/her to the … facility. No cardiopulmonary resuscitation is requested and no admission to an acute care intensive care unit.
- Level Four – Transfer to Acute Care with CPR
Transfer to an acute care hospital will be arranged immediately. Cardiopulmonary resuscitation (CPR) will be provided by qualified staff, if available, and by ambulance personnel.
In level-of-care forms, the patient is asked to express a wish about where, on a spectrum of interventions, they choose to sit – i.e., from non-intrusive treatments focused on comfort measures only, through to full acute care in hospital combined with resuscitation. These forms generally involve the use of tick-boxes to place the patient in a particular category of health care interventions. In the authors’ experiences, level-of-care forms are generally used on admission or shortly thereafter, and are reviewed at regular intervals, in many long-term care homes throughout Ontario. As is discussed below, the authors do not recommend the use of level-of-care forms, and believe that their prevalence may contribute to some of the persistent misconceptions in Ontario around the relationship between health care consent and advance care planning.
Another common type of advance care planning involves the expression of religious, or purely values-based, wishes about future care that would not be expected to change. As noted above, a common example would be a card carried by a member of the Jehovah’s Witness faith stating that the patient will not accept human blood products under any circumstances. These types of categorical wishes may or may not be solicited from patients by standard institutional policies and forms.
Lastly, many elderly patients express wishes about whether, and in what circumstances, they want to leave their home and reside (and receive care) in an institutional setting – such as a long-term care home.
While there are a myriad of potential wishes about future care, this Paper focuses largely on DNR and level-of-care wishes, as well as other wishes that are generally collected and recorded as part of health care organizations’ policies and procedures.
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