Law and Ethics in Oncology explores the legal and ethical issues oncologists must be aware of in this era of precision medicine and changing health-care policy, both to protect patients’ rights and to safeguard against potential legal jeopardy.
For years, ASCO and other medical societies have lamented the persistent overuse of aggressive end-of-life treatment for patients with incurable cancers.1,2 Far too many terminally ill patients receive treatment for cancer and comorbidities that is unlikely to provide any meaningful benefit.3 Moreover, this aggressive end-of-life treatment is harmful. It exposes patients to risks and harms, such as nausea, heart failure, fatigue, and constipation. In short, the burdens of treatment seriously outweigh the benefits.
Thaddeus Mason Pope, JD, PhD
What causes the overuse of aggressive end-of-life care? A significant portion of overtreatment is clinician-driven. For example, some commonly used tests and procedures lack evidence-based support. Others are duplicative of tests and procedures the patient has already received. This clinician-driven overtreatment is not the focus of this article. ASCO and other societies have already deployed various measures to address this problem.4,5 This article focuses on a different problem: overtreatment demanded by the patient or his/her surrogate. In this situation, the clinician ensures the patient understands the prognosis and strongly recommends a palliative-focused plan. Still, the patient or surrogate insists on aggressive curative-directed treatment.6-8
Surrogates: Imperfect Fiduciaries?
TERMINALLY ILL PATIENTS with cancer often lack decision-making capacity due to cognitive impairment.9,10 At that point, patients can no longer make their own health-care decisions. Instead, patients’ surrogates make treatment decisions on their behalf.11 Unfortunately, robust evidence shows that surrogates are imperfect fiduciaries. They often make far more aggressive treatment decisions for patients than those same patients would have made for themselves.12,13 In other words, surrogates may subject patients to unwanted treatment that they would reject if they had decision-making capacity.
Preventing Conflicts Between Clinicians and Surrogates
THERE ARE TWO key strategies for preventing end-of-life treatment conflicts between clinicians and surrogates. The first is to engage in more and better advance care planning. It is not surprising that surrogates do not make decisions consistent with patient preferences when patients themselves may have not shared or even formed preferences. Documented goals and wishes can inform, guide, and even constrain surrogate decision-making.14 Accordingly, ASCO has repeatedly endorsed the importance of advance care planning.15-17 Unfortunately, advance care planning completion rates remain low.18 Even expanded Medicare reimbursement has made little difference.19
The second strategy is to ensure that surrogates understand their role. They need on-the-job training.20 Moreover, clinicians should be careful to frame questions to surrogates that reflect their role and responsibility. For example, avoid asking, “What do you want us to do?” Instead, ask surrogates, “What would [the patient] say [or think] about his or her medical situation?”21
Resolving Conflicts Between Clinicians and Surrogates
EVEN WHEN clinicians cannot prevent conflict, they can often resolve it informally to avoid surrogate-induced overtreatment. Clinicians have an ethical and legal obligation to resist surrogate decisions that materially deviate from patients’ wishes or best interests. Fortunately, through further communication and mediation, often with the help of expert consultants, such as ethics or palliative care consultants, consensus can be reached in over 90% of disputes.22
A final way to control persistently rogue surrogates is to replace them.23 Some states permit physicians unilaterally to recognize the authority of a new surrogate. Others authorize the ethics committee to adjudicate disputes between and among surrogates. Still, physicians usually need (or want) a judicial determination.24 Increasingly, clinicians have successfully petitioned courts to replace surrogates when they demand treatment contrary to patients’ wishes or best interest.25
“Surrogates are imperfect fiduciaries. They often make far more aggressive treatment decisions for patients than those same patients would have made for themselves.”— Thaddeus Mason Pope, JD, PhD
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Limiting Patients’ and Surrogates’ Rights to ‘Futile’ Treatment
DESPITE FOLLOWING best practices, sometimes clinicians can neither prevent nor informally resolve end-of-life treatment conflicts. In these cases, some states limit patients’ or surrogates’ right to demand treatment that the patients’ clinicians judge inappropriate. The most notable example is the Texas Advance Directives Act26 The act permits clinicians to withhold or withdraw requested treatment, so long as (1) the facility’s review committee agrees; (2) the surrogate gets 48-hour notice of the committee meeting; and (3) the surrogate gets 10 days to transfer the patient to another facility.27 Virginia is considering legislation to enact a similar dispute resolution mechanism.28,29
Expanding Surrogates’ Rights to ‘Futile’ Treatment
ALTHOUGH VIRGINIA is considering following the Texas Advance Directives Act, far more states have been taking an opposite approach. Instead of limiting patients’ and surrogates’ rights to ‘futile’ treatment, a growing number of states have been expanding their rights to demand such treatment. These laws impose a duty on clinicians to provide surrogate-requested treatment, even when they deem it ‘futile’ or nonbeneficial. These laws explicitly prohibit clinicians from withholding or withdrawing treatment without patient or surrogate consent.30-33 More states are now considering similar legislation.34-36
Notwithstanding these new and forthcoming laws, clinicians still have no legal obligation to provide treatment that is truly “futile.”37 They have no duty to administer therapy that has zero chance of accomplishing the intended physiologic goal. Still, those cases of purely technical judgment are rare. Most end-of-life treatment conflicts involve value-based judgments about what constitutes a worthwhile benefit. Here, the trend among the states is to empower patients and surrogates.
Conclusion
IN THE SMALL subset of end-of-life treatment disputes that prove intractable, a growing number of states are granting more rights to surrogates and imposing more duties on clinicians. Therefore, to avoid acting against their medical and ethical judgment, clinicians should focus on upstream strategies. First, clinicians should have earlier end-of-life treatment discussions with patients. Because well-informed patients rarely want “futile” interventions, advance care planning can avert most conflicts. Second, clinicians should compassionately guide surrogates to meet their responsibilities yet be prepared to replace surrogates when they insist on aggressive treatment contrary to patients’ wishes or best interests. ■
DISCLOSURE: Dr. Pope reported no conflicts of interest.
Editor’s Note: The Law and Ethics in Oncology column is meant to provide general information about legal topics, not legal advice. The law is complex, varying from state to state, and each factual situation is different. Readers are advised to seek advice from their own attorney.
REFERENCES
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19. Aleccia J: End-of-life advice: More than 500,000 chat on Medicare’s dime. Kaiser Health News, August 14, 2017.
20. American Bar Association Commission on Law and Aging: Making medical decisions for someone else: A how-to guide, 2009. Available at www.americanbar.org/content/dam/aba/ administrative/law_aging/2011_aging_bk_proxy_guide_gen. authcheckdam.pdf. Accessed February 20, 2018.
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24. Stewart v Superior Court, No. S245579 (Cal. 2018) (petition for review).
26. Tex. Health & Safety Code § 166.046.
27. Pope TM: Procedural due process and intramural hospital dispute resolution mechanisms: The Texas Advance Directives Act. St. Louis Univ J Health Law & Policy 10:93-158, 2017.
30. Kan. S.B. 85 (2017), enacted and effective July 1, 2017.
31. Tex. S.B. 11 (2017), enacted and effective April 1, 2018.
32. Okla. Stat. tit. 63 §§ 3090.1 to 3090.4.
35. W.V. H.B. 4427 (2018).
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