Rights, Best Interests and JJ’s tragedy.November 30, 2014
Supreme Court of Canada Rules on physician assisted deathFebruary 7, 2015
In December the CPSO issued three draft policies for consultation: Planning for and Providing Quality End-of-Life care, Consent, and Professionalism and Human Rights. The consultation period runs until Feb 20th 2015. All three policies deal with significant ethical issues so I will blog on all three. http://www.cpso.on.ca/policies-and-publications/consultations
Planning for and Providing Quality End-of-Life care. http://policyconsult.cpso.on.ca/wp-content/uploads/2014/12/Draft-Planning-for-and-Providing-Quality-End-of-Life-Care-Policy_WP.pdf
The document is quite comprehensive, it has ten sections and runs to about 15 pages. (However, it does not discuss issues of feeding or withholding food and hydration.) In the commentary that follows numbers in parentheses refer to line numbers in the draft policy document. The most contentious section is 5.2 (lines 215-251) discussed in some detail below.
1. Quality Care
3. Advance Care Planning
4. Consent to Treatment
4.1 No Treatment Without Consent
4.2 Capacity at the End of Life
4.3 Consent on Behalf of an Incapable Patient
5. Interventions and Care Management
5.1 Palliative Care
5.2 Life-Saving and Life-Sustaining Treatment
5.3 Aggressive Pain Management and Palliative Sedation
6. Dying at Home
6.1 Home Care
6.2 Certification of Death
7. Wishes and Requests to Hasten Death
7.1 Responding to Wishes and Requests to Hasten Death
7.2 Euthanasia and Physician Assisted Death
8. Managing Conflicts
8.1 Conflict Resolution
8.2 Conflicts with Substitute Decision Makers
8.3 Conscientious Objection
10. Organ and Tissue Donation
The introduction sets up the nature of the fundamental challenges in providing good end-of-life care. On the one hand good end-of-life care “aligns with patients’ wishes values and beliefs” (8) but on the other hand care must meet the standard of care and physicians are charged with assisting “patients in identifying meaningful and realistic goals of care.” (15) Squaring that circle and identifying the shifting roles and decision-making authorities in the relationship between physicians, patients and their families and substitute decision-makers is the objective of the policy.
Those challenges are compounded by the key principles identified by the College as governing physician practice. The first is “Acting in the best interests of their patients.” (22) That principle articulates a central component of the historical relationship between physicians and patients but it is a contested and limited principle. First, the statement of the principle this way presupposes that we understand what we mean by “best interests” of the patient. “Best interests” according to whom? The Health Care Consent Act (HCCA, Ontario 1996), (http://www.e-laws.gov.on.ca/html/statutes/english/elaws_statutes_96h02_e.htm) describes one of its purposes as enhancing the autonomy of persons for whom treatment is proposed. (Section 1.C) It does not contain as part of its purpose “promote patient welfare or well-being or enhance the best interests of patients.” The structure of the act entitles the capable patient to refuse treatments. But that right to refuse treatments is not limited by some objective or external view of the patient’s “best interests.” Rather, what the Act does, in effect, is define “best interests” as whatever the patient says is in his or her “best interests.” The language of “best interests” is only found in the Act where a substitute decision-maker is being asked to make a decision in the absence of a patient’s previously expressed wishes, and even then “best interests” is qualified as being subject to the patients’ values and beliefs. (Section 21.2)
At its worst “acting in the best interests of patients” is a cloak for paternalism. What should a physician do if she firmly believes that the course of action – refusal of treatment or insistence on a resuscitation attempt, is clearly contrary to the patient’s best interests? (We will pick this topic up in more detail a little later.)
Much of the policy is uncontroversial. There is an emphasis on early, consistent communication and advance planning. The policy repeatedly stresses understanding the patient and his or her values and treating the patient as a complete person. In a telling remark at line 106 “It is also important for physicians to understand and personally acknowledge that in certain circumstances treatment cannot prevent death.” Now that is hardly news, but it is an attempt to acknowledge that a current problem in end-of-life care is continuing aggressive, intended to be curative, interventions beyond the time that hope for cure is reasonable.
The responsibility of physicians to initiate and sustain these conversations and interactions is also made clear: “Physicians are advised that they may need to initiate these discussions sensitively, over multiple occasions as patients may not always be ready to participate.” (143)
No treatment without consent (see also subsequent discussions on the Consent to Treatment draft policy.)
The policy notes that withdrawals of life-sustaining treatment are considered treatments under the HCCA as interpreted by the Supreme Court of Canada in the Rasouli case. Substitute decision-making is discussed and physicians are reminded that substitute decision-makers are obliged under the HCCA to follow the previously expressed wishes of the patient while capable. Physicians are also advised that they can seek the intervention of the Consent and Capacity Board (CCB) in the event of disputes with a substitute decision-maker.
Palliative care is recommended as early as possible as this can lead to improved quality of life for patients. (203)
Section 5.2 Life-Saving and Life Sustaining Treatment (lines 215-251) this is the controversial part.
“Physicians are not obliged to propose or provide life-saving or life-sustaining treatments that are not within the standard of care. However, when a life-saving or life-sustaining treatment falls within the standard of care, physicians must identify this treatment option for the patient and/or substitute decision-maker even if it is not the physicians’ preferred treatment option.” (221ff)
“Physicians must involve the patient and/or substitute decision-maker in the assessment of those treatment options that fall within the standard of care and be prepared to provide a life-saving or life-sustaining treatment if the patient or substitute decision-maker chooses this option and provides consent. Physicians are advised that patients and substitute decision-makers
may assess the proposed treatment options differently than the physician as they may consider, for example, whether the treatment prolongs life even if there is no clinical benefit.” (225ff)
The issue here is patient or family demands for “inappropriate” or “futile” treatments. Is a physician obliged to provide, for example, ventilation, or other life-sustaining interventions in an ICU because the patient or family demands it, even, for instance, if the patient has no realistic prospect of regaining consciousness? Is a physician required to insert a feeding tube at the demand of a family, even if there is no reasonable prospect for any sort of recovery and even if an external assessment of the patient indicates continued, extremely poor, quality of life? Should a physician be required to re-insert that feeding tube if the patient with dementia repeatedly pulls it out? How could a treatment that prolongs life but brings no clinical benefit be within the standard of care?
The fundamental question concerns who has the authority to make what decisions in end-of-life care (or health care more generally.) Normally, the physician determines what treatments may be appropriate and available and offers those treatments to the patient (or substitute decision-maker). Patient consent is the action or process of choosing from amongst those offered treatments – or rejecting all of them. Physicians have never been required to offer futile or inappropriate treatments (nor should they – I’d say it’s their job not to.) This draft policy relies on the phrase “standard of care” to do the job of determining what treatments must be offered and then, if consented to, must be provided – rather than a physician’s clinical judgment in any particular case. The problem here is that “standard of care” is too vague and nebulous a concept to do the job that is required. Some good physicians would accede to any of the patient or family requests listed above – and some good physicians would not. In the past physicians would have been able to defend their decisions not to offer and not to provide inappropriate or futile treatments on exactly the grounds that the treatments were inappropriate or futile. That method of reasoning is no longer available under this policy. If a good physician could offer the treatment under the same or relevantly similar conditions, that is, if the treatment is consistent with a conception of the “standard of care” then any physician must offer and provide it. This policy clearly tilts the balance of power in favour of patients and families, in effect not just giving them the power to consent to (refuse) treatments but rather giving them the right to demand.
The SCC in the Rasouli case attempted to limit their judgment to prevent this slippage. They said that their judgment applied only to withdrawals of life-sustaining treatment, and further said that patients are only entitled to consent to those treatments that have actually been offered by a health-care provider. That is, the consent doctrine and the HCCA does not determine what must be offered just what requires consent. At the time some commentators (myself included) worried that the SCC reasoning might be applied to justify patient demands, rather than just consent. This CPSO draft policy does exactly that.
This point is made even more clearly in lines 236-240.
When physicians propose a “Do Not Resuscitate” order (i.e. that cardiopulmonary resuscitation not be provided if the patient experiences cardiac arrest at some point in the future), they must explain to the patient and/or the substitute decision-maker why they propose not to provide the treatment and provide details regarding the alternative treatment(s) that they propose be
provided. The College requires physicians to obtain consent for a “Do Not Resuscitate” order. (236-240)
CPR is a treatment, and rightly considered as a treatment that is not appropriate in all cases. In some cases an attempt at CPR is genuinely futile – that is, it cannot have the effect for which it is intended. But here the College is requiring that a physician get consent to not do something that would not work. There is a certain absurdity to this. (If physicians had to get consent to every action that would not work and that they did not intend to perform, they would have to spend all of their time listing futile treatments and getting agreement not to do them.) The practical effect of requiring consent to a DNR is pernicious. If patient or substitute decision-maker consent is not forthcoming the physician is required to perform CPR even if that attempt is pointless and indeed assaultive. That does not promote patient autonomy – just the opposite it is dehumanizing, for both the victim and the physician forced to perform the assault.
The College believes that is has to adopt this position as a result of the ruling in EGJW v. MGC, 2014 CanLII 49888 (ON HPARB) In this case from Sunnybrook a DNR order was written without the patient’s substitute decision-maker’s consent and against her express wishes. With respect, I would suggest that this ruling does not settle the issue.
There is a further issue (one explicitly not considered by SCC in Rasouli) and that concerns the cost of health care. Many commentators describe health care costs in Ontario as unsustainable. And while there is some debate about the exact percentage a great deal of health care expenditure occurs in the last months or year of a person’s life. Some treatments are inappropriate because they do not bring a sufficient benefit to warrant the expenditure. While it is an open question just how we should limit health care expenditures it should be clear that granting patients or their families the right to demand resuscitations that cannot lead to a meaningful recovery (and then transfer to an ICU?) and to demand life-sustaining treatments that their physicians believe really only prolong dying, can only lead to increased ICU admissions and additional unsustainable costs. Is this a good way to use scarce health care resources?
The rest of the draft policy is largely uncontroversial – including the section on requests for euthanasia. It is against the law in Ontario. Section 5.3 deals with Aggressive Pain management and Palliative Sedation. This section makes it clear that there cannot be an intention to use medication to hasten death and that pain relief and sedation must be in proportion to the pain or symptoms. (257)
The College invites comments and feedback, their contact information can be found on their web site.