When faced with a terminal diagnosis, it may initially seem logical to provide patients with access to experimental treatments in a last ditch attempt at survival. However, while these treatments should be accessible to patients, they should not be considered ‘go-to’ treatment options by the desperate.
In Canada, we have the Special Access Programme (SAP), which makes accessible drugs that are not yet approved in Canada, including those still in experimental phases.
Many Western individuals question whether the terminally ill should have access to these treatments, feeling the program does more harm than good. Some argue that treating individuals with experimental drugs only serves to foster false hope and continue needless suffering.
This is due to the fact that the majority of these drugs, depending on what phase of testing they go through, may either not work or decrease a patient’s quality of life. The Canadian government states on their website that “[SAP] does not constitute an assurance that a drug is safe, efficacious or of high quality.”
To have this program available to Canadians is certainly important, as it gives individuals the autonomy to choose what they want put into their bodies, or how they want to live the remainder of their lives. While this autonomy is not absolute, as some individuals cannot provide informed consent, it should be available to those who can.
When faced with discussion about death, many of us — including physicians — tend to shy away from these intensely emotional situations. If doctors are to provide access to experimental drugs, then this neglectful attitude much change at the first signs of terminal diagnosis, so that patients can be informed enough to make a plan that balances the physician’s expertise with the patient’s emotional and physical needs.
Ironically, most doctors would choose not to resuscitate themselves if they were terminally ill.
A Journal of the American Medical Association study from 2013 showed that 88.3 per cent of physicians would personally choose a “do-not-resuscitate” order for themselves if they were terminally ill, yet during their medical practice they would ironically choose to put their terminally ill patients under aggressive treatments to prolong their lives. The study found that most seniors would choose to die peacefully at home, but only about a third really do.
This disconnect indicates that there is a problem in the way physicians communicate about death with their patients: while doctors are acutely knowledgeable about the suffering associated with a long drawn-out illness, patients may not be.
Furthermore, to have a discussion about how to continue a fight may often be easier than to admit that the fight is futile, and that there are no longer any weapons left in the artillery.
If doctors are going to suggest to their patients try experimental treatments as an alternative, then doctors must be fully trained to communicate the potential risks. This is because they may be in a position without liability if a patient is harmed, and we must be certain that the sickest among us are not exploited.
As a society, we need to be more accepting and acknowledge when an individual wants to end the fight, which means having supportive access to palliative care, and open conversations about death with physicians from the onset of a potentially terminal diagnosis.
To have access to experimental drugs without this shift in attitude will only serve to perpetuate our culture’s fear of death. While some individuals may choose experimental drugs, they should understand the full implications of the path they will travel on, because even their doctor may not know the exact course it will take.
