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 (see Figure 1): (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.
Cognitive preservation over pain management—Approach
Lucidity
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).
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.
Interviewer: 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
P: I want to have my wits about me, so that is a trade-off for me because I have things that I want to get accomplished and I don’t want to be rendered pain free but also be a zombie and not be able to articulate with friends and family and not be able to get things that I want to get done done.
— Interview 9
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.
First of all, I don’t take pain medication unless it’s absolutely necessary. I tolerate a fair bit of pain unless it’s excruciating and I must take something. So currently I am not taking any pain medication, but if you asked me a week ago, I was in excruciating pain and I was taking it.
— Interview 29
Cognitive preservation over pain management—Avoidance
Balance/mobility
Concerns about balance and mobility 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.
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
P: Well depending on the drug there are many side effects. Just as long as I can stand up without having the feeling of falling or anything like that and I am able to function.
I: So would something that impairs your cognitive abilities be okay for you to take?
P: To a degree yeah
I: Where would you draw the line?
P: It’s hard to say. As long as I am able to be mobile. I cant foresee any other side effects that really would affect me
— Interview 13
Drowsiness
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.
Sleepiness and drowsy when I take it during the daytime. Mostly I take it in the morning and at night, I don’t take it during the day.
— Interview 7
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 side effects, 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
I would say so, because it’s no fun being in pain. I would talk to Dr. X – the dose I am at now seems to be working, but if at some point the dosage needs to be increased then I would let him know. If I have to increase the dosage and that comes along with some side effects, then I guess I will just have to live with the side effects. So long as the side effects are not so bad as to make me loopy all day and out of sorts. I would like to maintain my cognitive functions.
— Interview 21
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.
It can make me dozy sometimes, which I like at nighttime especially to help me fall asleep.
— Interview 12
Comfort
A few participants indicated they were willing to tolerate side effects to allow for certain levels of comfort.
I: So you were thinking about your current quality of life and current pain management …
P: Yeah because the current quality of life… I was given a short about of life so you want it to be as high quality as possible.
— Interview 17
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
Suffering
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.
But last week I was screaming in pain and begging for a painkiller. I was really screaming. I didn’t care at that point if I had no cognition or whatever. If it were a constant exposure, then I am not sticking around. What is the use? We have assisted death in Canada, and it is not as if any of us in palliative care are getting any better.
— Interview 29
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
P: I cannot take the pain. I can’t sleep.
I: So you would rather have the [cognitive side] effects than the pain?
P: Yes.
— Interview 7
Alternative strategies
Patients described two alternative strategies to address the pain they were experiencing and find better balance between pain management and cognitive preservation. Some patients spoke about the use of cannabinoids to replace opioids for pain management, while others spoke of their efforts to limit breakthrough doses in order to preserve their cognition.
Cannabis
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 201833 and available for purchase in October 2018, which may explain participants’ heightened interest.
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
I have been doing something there that I call an experiment, I have been using cannabinoid CBD oil. Is it working? I am a walking pharmacy, so quite frankly I don’t know whether any chemical agent is working in isolation or whether it is working synergistically with the others. But I know that the body is full of opioid receptors and a lot of people have said that there is evidence for […] For example I have a sister-in-law in Dublin Ireland who uses CBD oil for her MS and swears by it. There is quiet a lot of information on the net about cannabinoids and MS but nothing really about ALS. I thought, you know what, nothing ventured nothing gained. And its organic, so I’m trying it.
— Interview 9
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.
I only ever take the medication when… well up until now before the pump I was taking a base dose of hydromorphone which would be in the background and then I had breakthrough immediate release hydromorphone for when its not cutting it and I need more. I was in control of… well the base dose I took regularly… but I was in control of the extra.
— Interview 4
But then again, I don’t make a habit of taking the breakthrough medication every day, only when I feel I need it. I take it and then I can go a whole week without taking it without needing additional intervention.
— Interview 21
Medical assistance in dying (MAiD)
Several participants expressed their feelings about the use of pain medication in the context of medical assistance in dying, which has been legal in Canada since June 201634.
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.
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
It also depends on how long. If it’s indefinite, then not very much. The kidney stone pain was extreme, and I wouldn’t want to tolerate that for more than half an hour. As soon as it looks like I have permanent, long term, significant pain, then I would go and apply for MAiD.
— Interview 28
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, in order to satisfy the Canadian legal requirement that a patient be able to express consent immediately prior to their death via medical assistance in dying34.
[…] 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
Yup. If I were to be in pain, then yeah. I know from the MAiD thing that unless you are cognitively okay then you can’t consent to the final blast.
— Interview 16