Personal empowerment in health care – a response to:

Health Care Consent, Advance Care Planning, and Goals of Care Practice Tools: The Challenge to Get it Right.

By Wahl, Dykeman and Walton.

Law Commission of Ontario Dec 2016.

ACE DDO Walton Formatted Dec 2,2016 LCO.pdf (lco-cdo.org)

The overall conclusion of the paper is that the Health Care Consent Act (1996) is generally sound but that it is often improperly understood and applied.

Understanding consent to treatment.

HCCA Part II Consent to Treatment

No Treatment without Consent

10.(1) A health practitioner who proposes a treatment for a person shall not administer the treatment, and shall take reasonable steps to ensure that it is not administered unless,

(a) he or she is of the opinion that the person is capable with respect to the treatment and the person has given consent; or

(b) he or she is of the opinion that the person is incapable with respect to the treatment, and the person’s substitute decision-maker has given consent on the person’s behalf in accordance with this Act.

(HCCA italics added.)

The Health Care Consent Act primarily concerns consent to “treatment.”  A treatment is defined as:

“anything that is done for a therapeutic, preventive, palliative, diagnostic, cosmetic or other health related purpose, and includes a course of treatment, plan of treatment or community treatment plan…”    (HCCA Interpretation)

The dynamic of decision making between health care practitioner and patient is significant.  The patient has nothing to consent to until a treatment has been proposed by a health care practitioner.  Advance care planning therefore, cannot be viewed on a model of consent.

So a patient cannot “pre-consent,” but could he or she pre-refuse – or avoid?  Or, to put it another way, how can I bind those around me, while I am capable not to do things to me that I do not want when I am incapable?

The mechanism for this under the HCCA is through the capable person’s wishes.  These wishes can be expressed verbally or in writing.  They bind the patient’s substitute decision maker to consent (or otherwise) to treatment decisions on behalf of the patient in accordance with those wishes (where possible.)

Under specific circumstances a patient’s wishes are binding directly on a health care provider.  In an emergency, treatment can be provided without consent.  However,

A health practitioner shall not administer the treatment under Section 25 (emergency) if the health practitioner has reasonable grounds to believe that the person, while capable and after attaining 16 years of age, expressed a wish applicable to the circumstances to refuse the treatment. (S26 HCCA)

Now let us look at a specific intervention, a resuscitation attempt.  In the event of a cardiac arrest an attempt at resuscitation is the default position within a hospital.  This means that regardless of whether a health care professional believes that a resuscitation attempt would be futile (ineffective) consent is required not to attempt the futile effort. Paradoxically not attempting a resuscitation is the only health care situation where a consent is required not to do something that will not work.  A resuscitation attempt is the paradigm case of an emergency intervention.  When a patient has a cardiac arrest he or she is vanishingly unlikely to be capable of making a health care decision.  It is also highly unlikely that the relevant substitute decision-maker is standing right there.  If the resuscitation attempt is not initiated immediately it is increasingly unlikely to succeed – so a resuscitation attempt is almost always initiated without seeking either the patient’s or the substitute decision-maker’s consent.  Many health care organizations foresee this possibility, however, and have a variety of processes to seek a patient’s wishes in the event that an arrest occurs.  These processes get called different things – Advance Directives, Goals of care, Levels of Care and so on, but in each of these cases what is recorded is the wish (binding on health care providers) of a patient concerning interventions in an emergency situation.

These patient wishes are typically recorded in writing, either through a form or through a notation on the patient’s chart.  Of course, this is not the only way a patient may express his or her wishes but it is the best method of ensuring a health care provider has access to a patient’s wishes in an emergency situation.

This use of Advance Care Plans, or Goals of Care discussions is completely ignored by Wahl et al in their discussion in Section II Background A. HCC and ACP in Ontario the Legal Framework. (pp 4-6)

The issue of authority is important.  The structure of health care consent, as assumed in HCCA is as follows:

• The patient presents with a problem or concern
• The physician (HCP) diagnoses
• The physician (HCP) proposes possible treatments
• The patient chooses from amongst the options offered, or refuses.

This model views authority in health care decision as a sort of ping pong match, with authority for decision-making flowing back and forth between patient and physician.  This might be an appropriate model for understanding consent to something like surgery, where the illness and treatment are episodic, but it is less well suited for the treatment of chronic conditions and it does not accurately represent a richer notion of shared or collaborative decision-making in health care.  Emmanuel and Emmanuel offer four models of physician/patient interaction:

Paternalistic, physician knows best – and decides,

Informative, the physician describes the options, consequences etc. and the patient chooses or refuses,

Interpretive, the physician elicits and elucidates the patient’s values and helps the patient choose,

Deliberative, the physician “helps the patient determine and choose the best health related values that can be realized in the clinical situation..”

Emanuel E., Emanuel L., Four Models of the Physician-Patient Relationship JAMA V 267 N 16 p 222 1992

Wahl’s understanding of consent to treatment and the relationship between physician and patient neatly fits the informative (sometimes called “consumer”) model.  However, a far richer and far more productive patient or person centred model sees health care decision-making as genuinely shared and collaborative – negotiated and extending across time.  On this model a richer understanding of the patient as a person informs the health provider’s decision-making concerning the treatments that are appropriately offered and extends to working with the patient as he or she both embraces treatment and lives with the outcomes.   (This collaborative model of shared decision-making corresponds more closely with the Emanuels’ interpretive and deliberative models.) Many organizations are expressly attempting to engage in this sort of collaborative decision-making with the clear intention of establishing relationships and setting parameters that will guide future care.  Perhaps Wahl is right in saying that this is not “consent” and so does not fit within the boundaries of the HCCA, but if so this is an argument for the conclusion that the Act needs revision.

“Pre-refusals” or “avoidance”

Clearly one cannot pre-consent to a treatment – because no treatment has yet been offered, but could one “pre-refuse.”  “Pre-refuse” is probably the wrong word, because the concept of “refusal” is predicated on being in response to an offer, and, by hypothesis, no such offer has been made.  But what about simply using the notion of “avoiding.”  Can I provide instructions that will permit me to avoid certain interactions with the health care system?   The capable person can obviously do this as he or she wishes.  If I do not present to a health care provider I avoid the interaction and consequently never get to the position of having to refuse an offer of treatment.  I would argue that this is exactly what a “no transfer” notation on a long-term care home resident’s file means.  It is not a pre-refusal of care, but rather an avoidance of the interaction in the first place.  As such, it would be a perfectly legitimate demand made by a capable resident for action (or rather inaction) at a time when he or she is incapable.

I think a similar argument can be made for a person’s decision that he or she would not wish to undergo a resuscitation attempt.  This is not to be construed as a pre-refusal of an offer, but rather an avoidance of that type of health care interaction.  As such, I would suggest that those avoidances of future health care interactions should be binding both on substitute decision-makers and on health care providers.

Back to resuscitation attempts

Let us return to the special case of a resuscitation attempt.  As noted, the standard approach in an Ontario hospital is that if a patient has a cardiac arrest a resuscitation attempt will be initiated – unless the patient has indicated otherwise.  But there are two lines of authority that lead to that decision – and different ways of recording that decision—and acting upon it.  The first can be viewed as the physician authority route.  In this case the physician determines that a resuscitation attempt would be futile (would not succeed) or would be inappropriate, the physician would then identify this to the patient – in the context of his or health conditions and the offer of other treatments or interventions and would seek the patient’s consent.  This is best done as part of a more general discussion of the patient’s care and clearly constitutes decision-making about a plan of treatment.  If the capable patient (or substitute decision-maker) consents this plan of treatment will be recorded in the patient’s chart, often accompanied by a physician’s order.  As such this is perfectly consistent with HCCA.

However, many Ontario hospitals have a process of asking patients on admission if they have nominated a Power of Attorney for Personal Care, or if they have written Advance Directives or they have a standardized approach that seeks a patient’s wishes in the event of a cardiac arrest (Resuscitation status, levels of care, goals of care.)  In all these cases the organization is seeking to record and honour the patient’s (person’s) capably expressed wishes.   These approaches are grounded in the recognition that a person has the right to control what is done to him – a right which precedes the HCCA – and which indeed is the very foundation of the HCCA.  I do not need anyone’s authority other than my own to instruct you not to touch me and to have that instruction followed even when I become incapable of  articulating it or insisting on it.

Wahl’s overly legalistic understanding of the HCCA is contrary to the stated intention of the HCCA – to promote autonomy.  Provincial and national efforts to place the person at the centre of care, and to attempt to understand the complete person as the context of care are empowering and should be encouraged rather than undermined.