Table 4 Sample quotations illustrating the distress that substitute decision-makers and medical team experienced

Mistrust of Medical Team

“In [SDM]’s evidence, they variously insisted [patient] was not “that sick, he’s only having trouble breathing,” that he would want everything done, that he wanted to die at home.”⁴³

“[SDM] had hopes and they wanted [patient] “continuously to be treated.” In [SDM]’s impassioned evidence, she said that the doctors’ job was to prolong life. She said that her father was not living on machines alone. She said that because he was “responsive to us, we feel certain diagnoses were wrong.” She said that doctors were human and they made mistakes.”²⁶

“[Physician] testified that [SDMs] were insisting on Full Code status because they were respecting [patient’s] wishes, values and beliefs. However, [physician] said, these were now impossible to respect because they violated physician ethical principles… Patients could not dictate treatment, that full treatment here was medically futile, not medically effective that [patient] would die regardless. [Physician] could not be required to act outside of the standard of care for [patient]. [Physician] believed that what he was being asked to provide, by following [patient]’s wishes was morally and ethically at odds with his physician’s oath to do no harm.”²¹

“[Physician] stated his belief that if [patient] could speak now, he would not want to remain on life support because he was suffering inhumanely with no potential benefits from treatment. [Physician] said that [patient] was in the process of dying, and they [SDMs] were only prolonging his death, rather than providing any meaningful life. [Physician] felt that nobody would ever want to prolong their dying days in this manner.”²⁰

“[Physician] stated that there was a difference between prolonging life and “living” and, at this point, aggressive medical intervention was only prolonging [patient’s] life and increasing his suffering… It was his opinion that no one would want to continue life in that manner given that “this was not a pleasant way to exist” and that there was no chance of “meaningful recovery.””⁴⁴

“In [physician’s] opinion the focus should be on quality of [patient’s] life, not duration. [Patient’s] well-being should focus on comfort, that life-support was uncomfortable and would serve to prolong [patient’s] dying and add to his suffering.”²⁵

“[Physician] proposed a plan of treatment that was focused on palliative care and would improve his [patient’s] well being. Although it could shorten his life, it would ensure that he was kept comfortable and would improve his quality of life and respect his dignity. [Physician] told the Board that [patient] felt pain and was uncomfortable when the numerous life preserving procedures were being performed.”²⁴

Guilt

“[SDM] wanted everything done for [patient]. He said: “I won't change my mind. I don't want to feel guilty. I don't want to kill my blood.””⁴⁵

Acceptance of Tradeoff between Quality and Quantity of Life

“[SDM] did not think [patient] would want to suffer to stay alive but also said [the medical team] should do everything they could for [patient], including resuscitation because it was better to be alive.”⁴³

“[SDM] said that [doctor] was correct that [patient] needed many tubes and she understood that the treatment team thought that these were uncomfortable for [patient]. However, she stated that [patient] would prefer to be uncomfortable, even in the face of the dementia and his dependence, that he would choose discomfort over a decision to stop taking all possible steps to maintain his life.”⁴⁴