Dilemmas with pain

I love being able to treat people’s pain without worrying too much about addiction.  This benefit of palliative medicine is certainly important especially in the pain phobic, escapist society we live in.  My patients usually won’t live long enough and/or have such very real pathology (i.e. cancer) that misuse of medications is quite low.

This, however, doesn't account for patients who have very real addictions and then unfortunately find themselves with a terminal diagnosis on hospice. Suddenly the ease of treating someone’s pain morphs into quite a challenging dilemma.

For instance, one of the tenants of palliative care is to relieve suffering. Thus, ready access to opioids is essential.  A regular doctor would have qualms about filling prescriptions early for pain medications or escalating doses rapidly.  But in hospice, if a patient is dying, sometimes doses easily escalate in an attempt to provide comfort and relief of suffering. 

What to do then, when you suspect inappropriate use?  Does someone with a past or even present addiction not “deserve” medications for pain? Can I refuse? Should I set limits? Refusal certainly goes against the grain of a specialty tasked with providing excellent pain control!

We certainly don’t interfere with addictions to other substances – On hospice, smokers generally keep smoking and alcoholics keep drinking…in fact it’s expected that in the last weeks of life people aren't going to change life long habits.  Is it different then for other substances?

Going deeper philosophically I could even argue that the misuse of opioids generally starts from the ability of those substances to numb an incredible emotional pain… it’s an escape, a postponement of dealing with the hurt, etc.  The qualm then is that this desire to escape can happen in very average people who are suddenly struck with a terminal diagnosis.  It isn't unusual to treat a 40 year old woman with breast cancer who has what we coin “existential” pain because she can’t deal with leaving her 3 small children. This type of patient often has a pattern of escalating doses of morphine to escape that reality.  Is that misuse of opioids? Or is it her way of dealing with dying? I don’t know of any physician who would refuse her medications…. So why then if the escape from pain started earlier and someone got labeled an addict, do we suddenly have issues with treating their long standing existential pain?

It’s certainly a topic worth exploring and one I admit not knowing all the answers for.  I suppose for now, I will continue to treat all pain, being aware of addictions and escapism and using the safest medications available, in an attempt to minimize risk of harm

Suffering

I think one of the harder things to do is watch someone suffer. I'm not sure if it's because it causes us to suffer ourselves, or if it just brings up fears of ourselves being in that situation.

Recently I had a patient with a complicated cancer. She was at our hospice house for an extended time, but clearly began to lose her fight. In those rough days of her body's transition to dying, she had a lot of symptoms. She was nauseated constantly, with dry heaves frequently, and had pain with any type of movement. Despite all the pills, liquids or IV's that I suggested for her, she wanted nothing.

Nurses began to fret and suggest maybe I could do something about this refusal of medications. "She's just lying in there, suffering..." Suggestions ranged from placing a pain patch, to convincing her of the necessity for a subcutaneous site so that medications could be given, despite her refusal.

While the intentions were good, I had to step back a minute.

Who am I to decide for someone the way they should die? While most would think suffering was indicative of a 'bad' death, the reality is for some, this is exactly the way they want to go. The number one priority for me as a palliative care physician is not to treat someone the way I want to be treated, or the way YOU want them to be treated, but to treat them the way THEY want to be treated.

Although very difficult, I respected my patient enough to not cajole, convince, persuade or trick her into pain medicine. With every frown, moan or grimace I winced, but in allowing her to do things her way, I witnessed an amazing ability she had to stay present, in mind and spirit, till the last moments of her life.

She died smiling. Her journey may not have been my choice, but it needed to be hers.

The Change

I wonder when things change? At what age do we start using pills for pain? Oh sure, even with little ones we dose out tylenol occasionally- but that's usually for fevers and not primarily pain. When I child whimpers from a fall, or even cries out loudly with an "owie" we reach out our arms naturally to draw them to us. Who hasn't fixed a minor scrape with a magic kiss? For those middle of the night terrors, we snuggle and bring them close. When they get anxious about trying something new, we give them a hug and gently encourage. Always though, we touch, grab them and pull them close.

Somewhere a long the way it changes. We stop touching and start medicating. Here's a pill for the pain, a tablet for your worries... No more hugs, no more snuggles. Wouldn't it be interesting if doctors treated patients like infants? Drew people in, instead of pushing them away with medicines. I wonder if there would be more success treating pain and anxiety if our initial response was to reach out in embrace?

Tension

I had a hour long drive to go visit a new home hospice patient.  She lives with her family in a very small town. I passed many farm fields covered with ice and snow to get to the town.  I found her street and recognized her home easily. I had already heard that this little town had surprised she and her family by building them a new home.

Jackie was diagnosed with lymphoma last year, and has had the most aggressive therapy available for this aggressive form. She and her husband had bought an old farm house and were in the process of fixing it up when she was diagnosed.  While gone for 3 months, away from her kids, getting a bone marrow transplant, the town had volunteered and built a magnificent home.

I walked up to the front, passing bikes strewn in the snow and rubber balls hidden behind bushes. I felt myself growing sad just walking to the door.

Jackie is my age, with 5 children, ages 2 1/2 up to 12.  MY AGE and dying.

Jackie's husband welcomed me in, to more Christmas chaos with decorations and wrapping paper around.  Jackie was able to walk out to greet me for just a few minutes before retiring to bed from exhaustion and nausea.  Her hair short, having just started to grow back after chemo. Face thin, having lost 50 lbs.

It was a hard visit. For the first time, I sensed tremendous distrust in me as a young hospice physician. Perhaps it was anger on her part at my life, or just the weariness of fighting so hard to beat something impossible to beat.  Regardless, there was a lot of tension in that house.

It's so different when I work with young patients vs. older one's. Young patients often keep hoping for miracles. Comments her husband made led me to believe that they both are still expecting she'll be cured, even with all medicines now stopped.  There's often more escapism in young people as well.  When it gets so hard to face the reality of being a mother of 5 and dying, it becomes easier to take medicines to go to sleep.  She's avoiding the pain, with drugs, but meanwhile loosing the precious time she has left with her family living.

Usually I leave visits feeling good, but not this day.  Passing the bikes again, I had a heavy heart.

Pain vs Harm

There is one thing, I think most of us would agree is tough to deal with- pain.  Although in medicine we say it is the 5th vital sign, it remains largely a mystery.  What makes it so difficult is it's subjective nature.  Doctors like objective findings; tests, numbers, X-rays.  When we must trust the experience of the patient only, it is uncomfortable.

There is however, a certain attitude we Americans have adopted about pain that I'm not sure I agree with.  Like our demand for immediate gratification, and sense of entitlement, somewhere along the way we've decided that we cannot experience pain.

There are ramifications to this mind set that ricochet thru every aspect of society. I saw it last month in OB, and I've seen it this week hourly in my orthopedics rotation. In an argument with a patient who is trying to get disability status from the back pain she's incurred over years of working with heavy machinery, the doctor I was working with said simply. "Look, your back condition is painful, but it is not dangerous.  Going back to work will not harm you" This patient could not separate the two - pain from harm.  In her mind to have pain was to have injury.  But in fact, it's not the same-

This is where society has erred- to link these concepts together.  IF we assume pain is damaging, and injurious, we avoid it at all costs, and will not tolerate it.  Thus our tendency to self medicate and avoid pain - with alcohol, drugs, and other bad habits.

One huge problem with the idea that pain must be avoided - is the impossibility of this. Thus, one is already doomed to failure in pursuit of never experiencing pain. There is something necessary about pain as well --it teaches. Child psychologists remind us to let infants stumble into tables and touch a flame- because guess what, they learn not to do it again.

All that said, should pain be treated? Of course. The caveat is that a residual amount of pain is okay, and expected.  Once my chronic pain patients with arthritis, injuries, etc realize that we can't take away the pain, just make it bearable - they do great.  It's those who continue to strive for a pain free existence that fail, and live out miserable lives.

Pain won't kill us.  It sounds harsh, but it's true. I'll continue to try and minimize pain for my patients, and myself.  But I also want to adjust mind sets, and separate pain from injury. The two may both occur in an event, but pain itself does not injure. Finally, pain is allowed, and will occur simply because we are human beings. So, pass the word along: PAIN HAPPENS