Do you read this blog for information on my journey with a rare disease, called Complex Regional Pain Syndrome (CRPS)? If you answered yes, this post is for you! Everyone else is welcome to read it as well! Have you ever wondered why this blog is named BioethiCanada?
This week is National Health Ethics Week (NHEW) in Canada, so I thought it would be a good time to that name. When I began blogging, back in 2007, it was to raise awareness of biomedical ethics; also called bioethics. That’s my own area of expertise, and back in the 2000s not many people knew what it was.
Now, with healthcare controversies and government decisions often in the news and on social media, more folks are familiar with bioethics issues.
One example you’ve probably read about – perhaps even talked about with friends and other loved ones – is medically-assisted dying. That’s when patients with incurable conditions or illnesses can ask a physician to help them die.
It’s a topic that’s often difficult to discuss because of its emotional impact. And also because of people’s different outlooks, whether from cultural or religious perspectives or more individual beliefs and wishes. That’s just one area of bioethics; there are many, many others!
So the name of this blog combines the words bioethics and Canada. Although most of my writing was applicable in any geographical area, I knew that I’d often be referring to Canadian law – or to our patchwork of healthcare and health insurance systems – so I wanted to make it clear to my readers that I was blogging from a Canadian perspective.
To celebrate NHEW this year, let’s take a quick look at two of the four principles of bioethics. These four principles are ‘generally accepted’, because some additional principles have been proposed and are used in certain areas. For this post, I’ll stick with the most common principles.
The two principles of bioethics that I’d like to look at with you are 1) beneficence and 2) non-maleficence:
- Beneficence is the concept that physicians and others involved in healthcare should act with the best interests of their patients in mind
- Non-maleficence is the basis of the well-known phrase ‘above all, do no harm’ that is often attributed to the Hippocratic Oath of physicians
In combination, the idea of these two principles is that medical treatment and other types of healthcare shouldn’t cause more harm than good for patients. This is often viewed at a societal or patient population level, in order to create general guidelines.
For NHEW 2017, let’s go through an imaginary example – a case study – to work through this concept. We’ll start with an imaginary medical condition. Let’s say that ‘disease XYZ’ (XYZ) strikes adults in their late 20s and early 30s, with most patients able to make their own treatment decisions with their physicians.
There’s no need for parental consent in treating XYZ, as would be the case if children were diagnosed with this disease. This condition causes the skin of the affected areas to repeatedly blister, leading to constant infections which become life-threatening within 5 years of diagnosis. These patients are in excruciating chronic pain; the only relief is to prevent their skin from blistering.
Now imagine, because it’s a rare disease, there are only two possible treatments for XYZ. To make it really interesting, let’s say that we don’t know what type of therapies, or treatments, these are. Each one could be a medical device, a medication, a surgery, or some other form of treatment. Whatever it is, though, each must be prescribed by a physician.
For most patients, Therapy 1 seems to be effective – with no major issues. The exact percentage of patients who see a good outcome for XYZ, using Therapy 1, is 98%. The other 2% of patients with XYZ get worse, or don’t see improvement, with Therapy 1.
This small proportion of patients, prescribed Therapy 1 by their doctors, experience problems serious enough to discontinue the therapy. Both the physicians and patients agreed to stop, or cease, this treatment.
There are usually no residual long term effects following cessation; once treatment with Therapy 1 ends, each patient’s condition soon stabilizes to its pre-treatment level. But for 0.5% of the patients with XYZ who try Therapy 1, their condition worsens; it remains worse after this treatment is discontinued. That 0.5% translates to five out of every thousand patients (or 5 in 1,000).
Because it’s a rare disease, the only other treatment for XYZ is Therapy 2. This treatment seems to cause serious problems for up to 9% of patients, and to worsen the condition for an additional 6% – even after the patients cease this treatment. These serious medical problems don’t go away after these patients stop taking Therapy 2. They’re worse off than before treatment, and will stay that way.
So a total of 15% of patients with XYZ either get worse or don’t have any improvement with Therapy 2. But for the remaining 85% of patients, it works well – without any serious issues. The 2% of XYZ patients who had to cease treatment with Therapy 1 all saw improvement with Therapy 2, with no serious adverse events (side effects).
There’s no way to know, at time of diagnosis with XYZ, which therapy would work best for an individual patient; there are no known genetic markers, signs, symptoms, or tests to guide treatment decisions for this rare condition.
If you were asked to give an opinion from a bioethics perspective, to a group of physicians, researchers, and others seeking to write a treatment guideline, which therapy would you recommend as the first-line treatment for patients with XYZ? Which one do you think should be tried first? Don’t forget that, without any treatment, each patient is expected to die within five years!
You have to base your decision only on the ‘facts’ above, and can’t make any assumptions – or guesses – about the patients, these two therapies, future treatments, costs, etc.
Now consider the bioethical principles of beneficence and non-maleficence. Which treatment options seems to create the most good for patients? Which one seems to cause the least harm?
Based on these two principles of bioethics, I’d recommend Therapy 1. It seems to be effective for the greatest number of XYZ patients (beneficence). It also looks as though it worsens the condition of fewer patients than Therapy 2 (non-maleficence). For patients who have to stop a treatment, fewer of them remain in worse condition after stopping Therapy 1 than Therapy 2.
Based on what little we know about Disease XYZ, and about the two possible treatments, Therapy 1 seems to best meet the principles of both beneficence and non-maleficence – for the greatest number of patients with this rare disease.
Is that what you also recommended? Feel free to reach out on social media, to let me know what your bioethics opinion would be or if you’d like to talk about this!
In the meantime, Happy NHEW 2017! I hope this case study helped explain two principles of bioethics that can be difficult to grasp. For more information about NHEW, visit the Canadian Bioethics Society website at: http://www.bioethics.ca