On Pain and Palliative Care

This morning I was reading The Art of Death by Edwidge Danticat. In it she recounts how her own mother refused all pain medication as she was dying of ovarian cancer because she didn’t want to be “gaga” at the end—even though she was in enough pain that her fists were constantly clenched. That reminded me of this post I’d been meaning to write for a while. I hope it might one day save you or a loved one a great deal of unnecessary suffering.

I’ve never been a big fan of the pharmaceutical industry, but in the past few months I have certainly come to appreciate some of its recent advances in pain medication. I used to imagine that I wouldn’t want to be on strong painkillers at the end of my life either, because I also want to be aware and able to communicate. However, there are now wonderful painkillers that mean we don’t necessarily have to make a choice between physical suffering and full, lucid consciousness.

I have been on a high dose of narcotic pain medication for months now. Fentanyl, to be precise. Yes, that’s the same drug that has tragically been killing so many who abuse it. Used properly at the right dose (it’s given as a patch, a small sticker that adheres to the skin and releases the correct dose at a constant rate), this drug allows the patient to be fully functional while completely erasing severe pain. Truly, it is a wonder drug. My brain works as well as it always has (to my dad’s amazement when he wanted to argue with me about climate change!). I’m not drowsy. I am fully attentive with all my reflexes intact. I can even still drive. In fact, I can’t tell that I’m on any drugs at all, nor can anyone interacting with me. All the writing I’ve done on this blog has been while on fentanyl. Most importantly, not being in pain has meant that I can enjoy time laughing and talking and crying with my loved ones. It means I can still enjoy the things that make life a pleasure. It means I still have the energy and focus for meaningful work. Pain is exhausting, physically and emotionally. Excessive pain does not allow one to be fully present to others. Dying in pain is not a better or more authentic death.

Our culture, unfortunately, carries a lot of baggage about pain. Most people have some ambivalence about treating pain, and all sorts of complicating notions mess up our approach to pain management. Many of us are stoic or believe in the value of being tough; for some, this is an important part of their self-concept, and admitting to pain can be perceived as weakness. Some people believe they deserve suffering. Others believe it is god’s will. Some are afraid of the power of narcotics, or think such drugs must be bad because of their association with criminals. Many people, like me, feel somehow guilty for asking for more painkillers, worried about being doubted or judged. There is also a lot of anxiety about addiction to pain medication, though studies show that medicating for pain does not lead to addiction the way recreational drug use does. Addiction is also a non-issue for palliative (dying) patients—so if any doctor expresses that concern, do set them straight.

I was the kind of person who never even took over-the-counter pain medication when sick or injured. I would just tolerate pain and trust my body to heal itself. It took a couple of persistent nurses and palliative care specialists several weeks to convince me that I should be experiencing zero pain as a terminal cancer patient. (In a medical context, pain is usually rated on a scale of one to ten.) And now I get it. When I was in pain, I was less active. I was less cheerful. Life was less fun. The pain didn’t add anything positive to my life. In fact, it drained me of energy and slowed my healing post-op. Witnessing my pain also distressed my loved ones. Pain has no value at the end of life, and serious effort should be made to avoid it. If your loved one is in this situation, learn how to advocate on their behalf, insisting that pain relief be prompt and complete – no half measures. As one nurse told me: ignore what the bottle says and just take what you need when you need it. Insist on a prescription that allows this. A person’s size and sex should not determine the dose, as each person’s body metabolizes these drugs in its own way. I only weighed about 115 pounds when well, yet my metabolism is fast; I have had to increase my dose to five times the original prescription and increase the frequency.

I am extremely fortunate to be under the care of one of the best palliative and pain specialists in North America. It is terrible that many hospitals and communities don’t offer any palliative care at all, and that even among those that do, the pain management practices are often outdated or insufficient. Carefully dosed pain medication should leave the patient comfortable, pain-free, and hopefully alert. If a particular medication isn’t well-tolerated, another should be tried. In the opiate category there are several different drugs that are some of our most effective painkillers, including morphine. These drugs don’t agree with everyone, unfortunately, though most of their common side effects, such as constipation or nausea, can be easily managed with other medications. And there are some types of pain that don’t respond well to opiates but do respond to other drugs. Don’t give up until the right medication has been found.

Many people believe that palliative care is only for patients in the last stages of a terminal illness. The best advice I received soon after I was diagnosed was to seek palliative care right away. Any patient with a stage 4 cancer or terminal diagnosis is entitled to palliative care regardless of their current health status. Getting palliative care will not hasten death. In fact, recent studies show that those who seek early palliative care actually live longer. My oncologists were not interested in my pain and never offered any pain management. When I mentioned my pain, they just nodded. This is quite common, as oncologists are usually surgeons who are focused on curing by cutting out tumours or prescribing chemo, not addressing symptoms. My palliative doctor took care of my pain first thing and is always ready to adjust my dosage as needed. This has immensely improved my quality of life over the past few months.

I think fear of pain is one of the reasons people have so much fear of cancer and death. We need to revise that fear and our expectations about terminal cancer since these advances in pain management. It really doesn’t have to be as bad as we have imagined or heard it can be. Those horror stories should be a thing of the past. While I expect to experience more and different pain as my disease progresses, I am now quite hopeful that most of that pain will at least be tolerable with the right medication, just as I am also hopeful that my death will be conscious and peaceful.