Ontario’s CCB vs. Texas Advance Directives Act

Prolonging life is a specialty of our time. Knowing when to stop trying -- that, we’re not so good at.

State legislators increasingly are responding to decision-making disputes in end-of-life care. But like the medical decisions inspiring them, the legislation holds great potential for doing harm in an effort to do good.

In Idaho, State Senator Sheryl L. Nuxoll is sponsor of the "Discrimination in Denial of Life-Preserving Treatment Act," which has passed the Senate and awaits House vote. It is, essentially, an anti-futility bill.

In Alaska, State Senator Fred Dyson proposes bolstering a competent patient’s exercise of consent as related to withdrawal of a Do Not Resuscitate Order. “The question is whether current law gives a patient, with capacity, the right to make a DNR order ineffective,” Dyson says. “I maintain it does, and SB 172 seeks to clarify the meaning of existing language in the law."

Meanwhile, among palliative and hospice chat groups on Twitter and other social networks, proponents want more states to adopt something like the Texas Advance Directives Act, or TADA. 

Dr. Robert Truog has written extensively about futile care and Texas law, and recently returned to the subject in the New England Journal of Medicine. The NEJM piece, indeed, inspired a recent flurry of pro-TADA tweets.

Truog writes that TADA “has defined one very concrete approach to addressing these dilemmas. When families demand treatments that have an exceedingly low likelihood of success or that sustain life of such low quality that one might reasonably say it is of no benefit to the patient, Texas law allows physicians to refuse to provide such treatments. Under the Texas legislation, demands by families for treatments that appear to meet these criteria are adjudicated by a hospital-based committee, and if the committee agrees with the clinicians, and if other providers cannot be located who are willing to provide such care, then treatment may be withdrawn without the permission of the patient’s surrogate.”

What TADA does well is resolve intractable disputes in a way the legal system cannot (terminal patients tend to die before their day in court ever arrives). With no dispute resolution, prolonging the dying process for no therapeutic or curative purpose can do harm to the care givers and patient alike.

“Although Texas has the most experience with this approach,” Truog writes, “other states are showing interest in similar proposals that address both the financial implications of providing allegedly inappropriate care and the concerns of clinicians who must endure the moral burdens and burnout associated with being compelled to provide treatments they believe are ethically wrong.”

TADA succeeds by eliminating that eventual day in court, which is something of an exercise in futility itself. TADA keeps the decision within the hospital, with an internal board deciding. But even if all cases are decided reasonably and well, with the patient’s best interests upheld, the big loser in the TADA scenario is due process, the constitutional protection of individual rights with a guaranteed day in court. As a result, with TADA, efficient resolution comes at the potential expense of public buy-in and trust.

Perhaps these cases of intractable dispute are so extreme, and so relatively few, that an end run around due process is acceptable. But if due process is worth upholding in all possible cases, is there an alternative way to ensure expedience, fairness and the patient’s best interests?

I think the answer is yes -- but the model is found, not in Texas, but in Ontario, Canada. Under the Health Care Consent Act, established in the 1990s, Ontario has created responsive appellate panel known as the Consent and Capacity Board, or CCB. It consists of lawyers, psychiatrists and members of the general public appointed by the lieutenant governor. It considers cases concerning mental health, consent, privacy, and substitute decisions.

In resolving intractable disputes, the CCB has an impressive record of looking out for the patient’s best interest. In one recent case, the CCB sympathized with the view that a patient’s care had become futile, and yet ruled for the patient’s family -- because the physicians hadn’t bothered to determine or consider the patient’s religious beliefs, and how the values might influence care decisions. In essence, the physicians sought to make decisions without really knowing the patient, and the CCB called them on it. In this case, the CCB passed the “best interests” test with flying colors.

The ethicist Peter Singer has written of medical futility: “There is no consensus about these cases, and they are horribly complicated. They require striking a balance between the desires of families and the moral distress of health care teams.”

The courts can’t do this with the timeliness required, and no matter how well structured, a Texas-style internal hospital board can carry the taint of power imbalance.

Disputes over futility have been a recurring theme of CEC studies, especially in Withholding Non-therapeutic CPR. As my colleague Carol Powers reminded me, “The CEC's report really focused on balancing the patient's rightful authority to establish his or her own ‘overall goals of care,’ based upon the patient's values and cultural biases, with the physician's rightful authority to determine which medical treatments will or won't accomplish those goals of care.”

Law professor Hilary Young of Ontario’s Queen’s University writes: “There should be a process to ensure that continued life support is, in fact, medically inappropriate, and to inform and counsel (substitute decision-makers) and family members. We must give families a reasonable amount of time to come to terms with the tragedy they face.”

To do otherwise, Young writes, “creates a dilemma for doctors and amounts to an undesirable legal entitlement to health care.”

Both the CCB and TADA deal effectively with the “reasonable amount of time” issue. But the CCB takes the decision outside the hospital, which gives it the benefit of perception. That, I believe, makes it the preferable option.