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When people talk about opioids, addiction is usually the first thing that comes to mind. Although I didn’t want PSP, it has given me real time to think and live through things that are truly important and G-d has preserved my cognition so I can write about them. For that I am eternally grateful.
But for families living with progressive or terminal illness, a different question may matter more.
If someone you love were in significant pain, would you prioritise maximum alertness, or would you prioritise comfort, even if pain relief carried some risk of making them less alert?
There is no easy answer.
Some people value every possible moment of interaction above all else. Others believe comfort and dignity should come first. Both positions are understandable. Both come from love.
What surprises me is how rarely families have this conversation before it becomes necessary.
As someone living with Progressive Supranuclear Palsy (PSP), I know where I stand.
For me, comfort matters. Dignity matters. Quality of life matters.
Before I go further, I should say clearly that I am not a doctor, neurologist, pain specialist or palliative care expert. I am not offering medical advice. I am simply a patient living with PSP and thinking through questions that many people with progressive illness eventually face.
My own experience is with tramadol, which I was prescribed for nerve pain.
The problem is simple.
It works.
When the pain begins to build, tramadol reduces it, helps me relax and makes life considerably easier.
That leaves me with a choice.
Do I try to manage the pain through physiotherapy, stretching, massage and other non-drug approaches?
Do I use medications such as ibuprofen which, for me, are generally slower and less effective for this kind of pain?
Or do I take the medication that consistently gives me meaningful relief?
The obvious choice would seem to be the medication that works.
Yet I still hesitate.
Part of that hesitation comes from experience.
More than twenty years ago, after ACL reconstruction surgery, I was prescribed morphine. When the morphine was stopped, I experienced withdrawal symptoms strong enough that I still remember them clearly today.
That experience stayed with me. It taught me how powerful these drugs can be. It also taught me that physical dependence is real, even when medication has been prescribed appropriately for a genuine medical reason.
That distinction matters.
Dependence is not the same as addiction.
But it is still real, and it still shapes the way I think about pain relief today.
At the same time, another question keeps returning to me.
Why should I suffer unnecessarily?
PSP already brings enough with it: pain, fatigue, reduced mobility, frustration, loss of independence and an endless series of compromises.
I do not believe additional suffering becomes virtuous simply because it is endured.
One of the most helpful concepts I have come across is “Total Pain”, developed by Dame Cicely Saunders, founder of the modern hospice movement. The idea is that suffering is not merely physical. Serious illness affects us physically, emotionally, socially and spiritually, and each dimension can influence the others.
[Palliative Care Network of Wisconsin]
That makes intuitive sense to me. Pain drains energy. Reduced energy affects mood. Mood affects relationships. Relationships affect quality of life.
When pain is better controlled, people may have more energy for the things that matter. They may be able to engage more, not less.
That is why I do not think the real question is opioids versus no opioids.
It is how best to reduce suffering while preserving as much quality of life as possible.
Of course, opioids are powerful medicines with real risks, including sedation, physical dependence and respiratory depression, especially when combined with some other medications. These are decisions that should be made carefully with clinicians who understand the individual patient.
But the medical question is only part of it.
The deeper issue is whether the people who may one day have to speak for us actually know what we would want.
Too many patients never tell their families.
Then one day a spouse, child, sibling or other loved one is forced to make decisions on their behalf without knowing whether they are truly honouring that person’s wishes.
That burden can be enormous.
I feel this particularly strongly because my own views on symptom management are not necessarily identical to those of the person I have appointed as my Power of Attorney.
That is precisely why clarity matters.
A Power of Attorney is not there to make the decision they would choose for themselves.
They are there to make the decision that I would choose if I could still express it.
Fortunately, I trust my Power of Attorney completely. I know that if the time comes, he will carry out my wishes rather than impose his own, even if his instincts differ from mine.
But trust alone is not enough.
We cannot expect our families to read our minds.
If comfort is your priority, tell them.
If maximum alertness is your priority, tell them.
If there are treatments you would accept and others you would refuse, tell them.
The greatest gift we can sometimes give our families is not a legal document.
It is clarity.
Personally, if my PSP progresses to the point where stronger pain management becomes necessary, I would choose comfort.
That is not giving up.
It is not a wish to be sedated unnecessarily.
It is simply an expression of what matters most to me.
For me, comfort is part of dignity.
Others may choose differently. They may want to preserve every possible moment of alertness regardless of the discomfort involved.
I respect that completely.
But it is not my choice.
Today, I have no reason to believe I am addicted to tramadol. I take it rarely and only when I genuinely need it.
What I do know is that when I take it, it helps enormously.
So for me, the real question is not whether opioids are good or bad.
It is whether we have been honest with ourselves and with our families about what we would want if the choice ever had to be made.
I do not think there is a universally correct answer.
I do think it is a conversation worth having before somebody else is forced to answer it for you.
If you were living with a progressive illness, would you prioritise comfort or alertness?
Have you told your family?
And if not, what is stopping you?
