Table 3 Sample quotations illustrating the different ways that “Do Everything” were used by substitute decision-makers and medical team
“Do Everything” as used by SDMs (Focusing on Quantity of Life) | “Do Everything” as used by medical team (Focusing on Quality of Life) |
|---|---|
“Do everything possible” “[SDM] refused consent to withdrawal of life support, insisting that the medical team continue to do everything possible to extend [patient’s] life… [Patient] would often say things like “no matter what, you keep me alive, I want CPR, whatever it takes – you’d better remember!”, “no matter how many tubes or needles, to the nth degree, I still want it.”20 “SDM said his father (patient) would have wanted everything done that was possible to do because he was a fighter… SDM said [patient’s] motto was “where there is life, there is hope” …”25 | “Patient is dying despite having tried everything available” |
“In my and many other health care providers’ opinion [patient] is dying and we are proposing palliative care. We have exhausted all medical treatment (aggressive and routine) available to us. Further aggressive care would pose more risk than benefit. [SDM] do not understand that [patient’s] condition is irreversible and terminal and that [the medical team] have tried everything available such as life support via a ventilator, antibiotics, artificial feeding and despite this his overall health continues to decline. [SDM] believe that further feeding, admission to ICU, and medication will make [patient] regain his strength and cognitive function when only the opposite is true… A plan of treatment that was focused on palliative care and would improve [patient’s] well being. Although it could shorten [patient’s] life, it would ensure that he was kept comfortable and would improve his quality of life and respect his dignity.”24 “Initially with [doctor’s name] and then with [doctor’s name] to provide further confirmation to family that everything has been tried and that his heart can’t recover… [Doctor] considered the current course of treatment to be a form of torture for [patient]…that his patient was suffering while on the life support machines. [Doctor] recommended the proposed course of treatment [palliative care] as a way to allow his patient to lessen his pain and to die in dignity… [Patient] would likely pass away within a short time of removal of the life support machines. His death would alleviate [patient’s] pain and suffering and improve [patient’s] well-being in the doctor’s opinion.”23 | |
“Preserving” life | |
“As a practicing Catholic, father (patient) | |
believes that life is a gift given by God and it | |
is a duty to do everything to preserve it.”21 “Continuing” life “SDM said she and [patient] talked about life support and [patient’s] view was that you did everything you could to fight. Everything had to be done to continue life… He would want to stay alive as long as possible… to endure pain in exchange for the joy of seeing his family present at his bedside”22 “Prolonging” life “[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… because he was “responsive to us, we feel certain diagnoses were wrong.” She said that doctors were human and they made mistakes.”26 | |
“Without providing everything SDM wanted” “The doctor also said the focus of the proposed plan [including palliative care] was [patient]’s best interest but without providing everything that the family wanted and believed was in [patient]’s best interests.”42 |