Pain and end-of-life meds
I'm a big baby, but people living with serious illnesses often need powerful drugs
In the last year, my genetically flat feet have led me to develop peroneal tendonitis, which sounds like it has something to do with the perineum but I assure you does not. The peroneal tendons connect our lower leg muscles to our feet, as I understand it (which is to say: very little), and the physical structure of my feet and ankles means those tendons in my left leg have gotten strained, causing pain and stiffness1.
This led to a walking boot for a month back in February, the wearing of an Asos ankle brace after that, and taking anti-inflammatories, plus lots of ice packs, elevation, and general rest of said leg.
Literally, I have complained about this (I recognize) relatively minor discomfort more than a dear friend who underwent six weeks of five-days-a-week radiation for breast cancer complained about that. She continues to be on meds to prevent the cancer recurring that cause severe joint pain, brain fog, bone-density loss, and a host of other unpleasant side effects. Again, she rarely complains about it.
I have the lowest pain threshold of anyone I know. My pain tolerance is non-existent, and when I hurt, you know it. You know how sometimes you hear people say of a recently deceased loved one, “She never complained”? I’m the opposite of that.
I talk about my relatively minor pain here because when I work with people with severe illnesses — cancer in particular, but lots of other diseases also cause pain — I often hear them say they don’t want to take strong pain medication because they “don’t want to get hooked.”
I get it: People have been “scared straight” by talk of the opioid epidemic. There’s real harm being done by the disease of addiction and by abuse of prescription meds. Heck, the other day I had to sign for the number of gabapentin pills I was receiving for my dog. The vet tech I could “thank the people abusing it.”
What folks who “don’t want to get hooked” fail to recognize is this: People who become drug addicts have a complicated mix of reasons behind it. It isn’t as simple as, I took morphine as prescribed by my doctor and became a junkie.
Liquid morphine, or Roxanol, is the typical first high-powered medication most hospices use for severe pain relief or difficulty breathing. In my experience, the initial dose given in those circumstances is usually very small to see how a patient will tolerate it.
The desired effect is that a patient will have less pain and, if they’re struggling to breathe in any way, will breathe more easily. The vast majority of patients I’ve served have taken liquid morphine sublingually — aka, under the tongue. I’m told it has a nasty bitter taste, but taking it this way helps it work more quickly than when taken in tablet form, usually in about 15 to 20 minutes.
The key thing to remember about taking opioids during severe illness or at the end of life is this: Most folks who take morphine for a terminal illness don’t become addicted because they’re not taking the medication recreationally. Sick people take it because they’re in a lot of pain and/or having a hard time getting their breath (think chronic obstructive pulmonary disease).
Besides, as one patient’s daughter said to me with a laugh, “Who cares if she does get hooked? She’s dying!” (Spoiler alert: Her mom didn’t get hooked. She took the meds as prescribed and her pain was well-managed.)
The other big thing to know about pain in general is stay ahead of it. That means taking pain medications as prescribed, rather than waiting to hurt and then taking it.
An illustration: If we think of pain as cars on a roller coaster, you want the medicine car all but top of the pain car. You don’t want the pain to reach its peak while the medicine is still sitting in the station loading passengers.
If we do let pain get ahead of medicine that way, the medication can’t catch up, and the patient then needs an extra dose.
This is why doctors prescribe pain meds every X number of hours: The dosage typically lasts that long, or close to it, and taking the next dose on time means keeping the pain in check.
This is all a lot to remember when someone you love is suffering, which is why my motto when I worked in hospice was, “If you’re wondering if you should call, call.” The same is true as a death doula: If you have a question, just ask. I’m always happy to explain things again, clarify something confusing, or say, “Call the hospice nurse.”
Another important note on pain: My philosophy is — always, but especially when living with a terminal illness — if someone says they’re hurting, they’re hurting. Many people are taught, consciously or unconsciously, not to show pain. So we look for nonverbal signs: a furrowed brow, pinched lips, bad mood.
Additionally, it’s well known (and scientifically proven by studies) that doctors underestimate and undertreat Black people’s pain. So a doula might need to help loved ones advocate for better control of pain for a Black client than a white one. In an unequal medical system, part of my role is to ensure that my client has what they need to be as peaceful and comfortable as possible. Sometimes that means going to bat for better pain control. White privilege is real and horrible, but if I can wield it to better support a sick person and their loved ones, I’ll do it in a heartbeat.
Fun fact: I went to my local Fleet Feet the other day to get new sneaks, and their magic foot machine measured my arches as nonexistent. Like, there was a left-right slider to show low to high, and the arrows pointed all the way left. Neat, huh?