Like Mr. B, hospitalized patients at the end of life frequently lack decision-making capacity. So, decisions regarding their treatment are usually made by surrogate decision makers (Chapter 13). A potentially inappropriate treatment (PIT) dispute is typically described as a situation in which a surrogate wants to continue the patient’s nonpalliative treatment (usually life-sustaining treatment) but the healthcare provider wants to stop (Bosslet et al., 2015). Providers normally need consent to withhold or withdraw treatment. Therefore, to resolve PIT disputes, providers must: (1) accede to the surrogate, (2) obtain consent, or (3) find a legitimate basis to withhold or withdraw treatment without consent.

Increasingly, medical and legal professionals across the world have been calling for the establishment of special adjudicatory dispute resolution mechanisms to resolve intractable end-of-life medical treatment disputes. Although it is controversial, many commentators regard the conflict resolution provisions in the 1999 Texas Advance Directives Act (TADA) as a leading model and template. This chapter examines the process of passing this law and provides policy-makers in other jurisdictions with tips and strategies for enacting legislation like TADA. It also considers more recent developments, and in particular, efforts to slowly dismantle it. In short, this chapter is an examination of the conditions for the rise and fall of TADA. This inquiry is valuable, because it highlights lessons for other jurisdictions considering law reform on end-of-life medical treatment.

This chapter identifies international trends in end-of-life law reform from analysing ten case studies of reform from the United Kingdom, the United States, Canada, Australia, the Netherlands and Belgium. A key finding is that law reform is more likely to succeed when supported by ‘good process’. This includes effective consultation with key stakeholders and engaging with experts. Social science evidence is also increasingly influential in both legislative and judicial reform, particularly in relation to how assisted dying systems can operate safely in practice. Other factors contributing to reform are the support or advocacy of key individuals or groups, shifts in community sentiment, and changes in political composition of parliaments. The chapter also concludes that law reform is ultimately a political exercise. Compromise is often required for a law to pass. This has implications for designing effective end-of-life law, pointing to the need for critical evaluation of both proposed laws and how existing laws operate in practice. The chapter concludes with reflections about the future of end-of-life law.

Objectives

1. Describe the three main deinitions of “medical futility.”

2. Identify the key factors at the heart of disagreements between surrogates and providers concerning whether a treatment is beneicial.

3. Distinguish six strategies that ethics committees can use to prevent and to resolve medical futility disputes.

Case

One year ago, 73-year-old Mr. B came to your hospital for surgery on a thymus gland tumor. While the surgery was successful, during his post-operative recovery, Mr. B’s endotracheal tube became dislodged. This resulted in severe, irreversible brain damage. Mr. B was subsequently discharged to other facilities. But, 6 months ago, he was readmitted to your hospital with a diagnosis of renal failure. He has remained there ever since, in a persistent vegetative state, dependent for survival on mechanical ventilation, hemodialysis, and tube feedings. Mr. B has developed increasingly severe decubitus ulcers and recurrent infections. He remains a full code.

In light of his deteriorating status, Mr. B’s physicians have determined that he is beyond medical rescue. They think that it is medically inappropriate and outside the standard of care to continue his life-sustaining treatment. Indeed, they think it is ethically inappropriate and inhumane to sustain Mr. B artificially while his body is decomposing.

The treatment team wants to discontinue dialysis and issue a DNAR order. They have carefully explained their proposed treatment plan to Mr. B’s surrogate, his daughter. But, even after many conferences, she will not consent. Mr. B’s family is very close. Discussion with his wife and sons confirms that the surrogate is acting in accordance with Mr. B’s consistent, considered, and deliberated preferences. The hospital tried to transfer Mr. B to another facility willing to provide the disputed treatment, but none could be found. Mr. B’s attending physician has sought guidance from the ethics committee.