Out of the 64 patients approached, 52% declined participation due to limited time, or feelings of physical or emotional inability. A total of 31 participants were recruited from the Temmy Latner Centre for Palliative Care and their demographics appear in Table 1. Interview length was 15–30 minutes. Data were collected between July and September of 2018.
Several themes emerged from this work: (1) Desire for cognitive preservation over pain control; (2) Desire for pain control over cognitive preservation; (3) Alternative strategies to pain management; and (4) The relationship of medical assistance in dying (MAiD) and pain management. For the first two themes, patients often framed their thoughts as either approaching the goal (e.g., “I choose cognitive preservation over pain management because I want to remain lucid”) or as avoiding the negative side effects (e.g., “I choose cognitive preservation over pain management because pain medication makes me intolerably drowsy”). We have structured our results for the first two themes to reflect these different framing techniques of “approach” and “avoidance.” While we present the results as a dichotomy between cognitive preservation and pain avoidance, in reality this is a much more nuanced distinction and a single patient may identify with both positions simultaneously—an approach-avoidance conflict. See Table 2 for additional participant quotes.
Cognitive preservation over pain management—Approach
Of primary concern to many participants was retaining their lucidity and alertness. Many expressed a desire not to miss out on events due to the sedating effect of pain medication. For some, this was driven by wanting to be able to interact with loved ones or to remain able to participate in certain activities (e.g., driving).
Interviewer: What factors would you consider when making decisions about your pain management?
Patient: I want to be as awake as I can be. I want to be… well this is the next part of the journey, and I don’t want to miss out.
I: So your cognition was a factor when you were considering your treatment course?
P: Yes definitely. It’s the most important thing to me because I don’t have a lot of time but while I am here I want to be here [with my family].
— Interview 4
High pain tolerance
Many participants stated they possessed a high tolerance to pain and therefore did not want or need medication to manage their pain. Some stated they avoided pain medications for many years, others that they would only take or consider taking medication if the pain was excruciating.
I: So would you be willing to tolerate the maximum level of pain?
P: I have very high pain tolerance. I don’t think I feel a lot of pain. When I got out of brain surgery I climbed off the operating table and walked into my own recovery bed. Sometimes if you aren't all panicked and afraid you might not experience pain…I have a little bit of pain every day, like the ones I characterized with you. Like body aches and struggles getting up and down, and if I pull my shoulder out. I think my pain tolerance is fairly good, I don’t know if I could go through childbirth though. They say it’s as bad as gunshot wounds.
— Interview 6
Cognitive preservation over pain management—Avoidance
Feelings of dizziness or disorientation were a commonly reported concern driving patients’ need for cognitive preservation. Many were unwilling to sacrifice their mobility in exchange for pain relief. Those that took pain medication and experienced disorientation reported the need for extra caution when getting around.
I: And do these [side effects] negatively impact your day-to-day functioning?
P: Sometimes I worry about the effect [of the pain medication] on my mobility and if it puts me more at risk for a fall and losing my balance.
I: So do you feel like you are a bit out of balance?
P: Yes sometimes. It’s hard to say exactly what the cause is.
I: So how does this impact your daily functions?
P: I tread carefully.
— Interview 12
Drowsiness was a side effect many wished to avoid. Primarily, patients did not want to miss out on the time they had remaining, with some reporting that they would sleep for exceedingly long periods due to their pain medications. Some stated that they avoided certain activities (e.g., cooking and driving) after taking their pain medications, out of concern they and/or someone else may be hurt because of their drowsiness.
I: Okay. And do you experience any side effects from that medication?
P: Well sometimes it can make you a bit dim and sleepy, all of those things.
I: And do these negatively impact your day-to-day functioning?
P: Of course they do. I make decisions based on that. Like if I am drowsy then its not the best decision to drive a car, as I said. So I make decisions based on what medications I take and what the level of pain is.
— Interview 4
Pain management over cognitive preservation—Approach
Side effects of cognitive compromise are acceptable
Several participants expressed that the side effects of pain medications were acceptable, given the relief from pain provided. Some explained they would be willing to tolerate disorientation or drowsiness, if they were able to retain mobility and not be debilitated by pain.
But no I think I am now at that point where I have to start saying ‘yes there is a trade off and yes it might make me a little foggy, and I will have to learn to live and compensate for that’. But I need to try and dampen down the pain.
— Interview 9
Good night’s sleep
The ability to sleep soundly at night was mentioned by a few participants as a desirable outcome of pain medications, as their pain levels would keep them up at night. One participant specifically mentioned their desire to sleep outweighed any concerns of side effects.
I: What effects does the pain medication provide? Is it primarily pain relief or do you have other effects as well?
P: It can make me dozy sometimes, which I like at nighttime especially to help me fall asleep.
— Interview 12
A few participants indicated they were willing to tolerate side effects to allow for certain levels of comfort.
I: In general, are you more willing to tolerate pain or cognitive side effects?
P: Well, through this thank god I have had minimal pain, except post-operatively. And I think what… if my pain were really severe and I needed enough analgesia to make me comfortable then definitely my husband and daughter would be designated by me to manage what they thought was best.
I: How do you think they would factor cognition and other side effects into that?
P: I think if it was all pre-arranged then they would go for my comfort.
I: So do you think they would say that you would be okay to sacrifice some cognitive abilities?
P: Yup. If I were to be in pain then yeah.
— Interview 16
Pain management over cognitive preservation—Avoidance
Avoidance of a feeling of suffering was a significant factor for taking pain mediation in many participants, with many being willing to sacrifice their cognition to avoid prolonged suffering.
I: From a personal standpoint then where would that point be for you?
P: I think if the pain is not controlled by the doses you are using, and I were suffering from pain… but I think a lot of people that have severe pain or pain it just doesn’t go away… it’s not only the physical pain but it’s also the mental. It is very wearing and tiring.
— Interview 16
Several participants expressed an interest in the use of cannabis or cannabis derivatives to address pain. Interviews took place in July–September 2018—recreational cannabis was legalized in Canada in June 201820 and available for purchase in October 2018, which may explain participants’ heightened interest.
P: I am trying to get down on it. I would like to get to the point where I can flip it at least 50% over to cannabis. I have done cannabis before. But I would like to get to the point where I can use cannabis to substitute for morphine.
— Interview 25
Limiting breakthrough analgesic doses
Limiting breakthrough analgesic doses was reported by a few participants. These individuals would only take their breakthroughs in specific circumstances, as the side effects (e.g., cognitive impairment, constipation) were not often tolerable.
P: […] and then with the breakthrough, I am not driving right now because I am getting used to this, but up until now I have been driving. With the breakthrough I had a rule that if I wanted to drive during the day, no breakthrough until I got home. Even though no one told me that I couldn’t, I just thought that I would feel terrible if something happened and it was because I was a little bit dimmer because I took a breakthrough or whatever and something terrible happened. I would never forgive myself.
— Interview 4
Medical assistance in dying (MAiD)
Several participants expressed their feelings towards the use of pain medication in the context of medical assistance in dying, which has been legal in Canada since June 201621.
Choosing MAiD because of intolerable side effects/pain
Two participants expressed their desire to pursue medical assistance in dying if they reached a point at which their pain or other side effects were intolerable to live with.
P: If the pain increases and becomes intolerable, I would have to take a look at my life at that point and decide if I want to stick around. I don’t want to become just something that is just sitting there in a daze. Having cognitive function is very important, that is all about quality of life.
— Interview 29
Avoiding medication due to a want of lucidity to consent to medical assistance in dying
Two other patients expressed a desire to pursue medical assistance in dying and were specifically avoiding pain medications that may lead to cognitive compromise to satisfy the Canadian legal requirement that a patient be able to express consent immediately prior to their death via medical assistance in dying21.
P: […] I am definitely wanting to pursue the idea of MAiD. In order to invoke that right now, we understand that the legislation is that one must be clear of mind at the moment of signing. And the trade off seems to be, from what I’ve read, that cancer patients say that they would forgo the pain medication in order to be clear of mind. It is a terrible trade off, and I hope over time that the particular clause gets reviewed and modified, because there is no reason for that.
— Interview 23