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.

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About susanbriscoe

English teacher, writer
This entry was posted in On Dying and Living and tagged , , , , , . Bookmark the permalink.

21 Responses to On Pain and Palliative Care

  1. shoppers says:

    As always Susan right on the money. Thank you for writing this.

    Liked by 2 people

  2. sarah says:

    your willingness to share all this with us is amazing. I was so happy to see you the other day. That smile of yours lit up the woods. big love. xxx

    Liked by 1 person

  3. Thank you for writing about your journey. I agree with you on the medications and I’m thankful to hear they are doing there part and allowing you to enjoy the little things in life. Keep writing, I love that you write from the heart. Take care

    Liked by 2 people

  4. curioussteph says:

    Beautiful writing and wisdom, Susan. So happy that your pain is well controlled and that your quality of life is maximized. So very important. I believe you referenced Atul Gawande’s book, Being Mortal, earlier in your blog. He also speaks to the importance of good palliative care. In my area, there are a growing number of palliative physicians as well as hospices providing care and more of the difficult conversations are being had. Thanks for using your own experience to teach us all.

    Liked by 2 people

  5. I had chemo for bone marrow transplant a couple of years ago and had serious complications for 4-5 months after which involved terrible pain. It was out of the question for me to endure this kind of pain at all and I was heavily sedated most of the time. Thank God for palliative care doctors, there is no point at all to suffer more than you already are knowing your illness prognosis.

    Liked by 1 person

  6. christine marlow says:

    You are a wonderful writer , straight from your heart. I like the way you think xx

    Liked by 2 people

  7. QP and Eye says:

    Inspirational and courageous

    Liked by 1 person

  8. What a treasure this blog is. For all. xo

    Liked by 2 people

  9. chantal lavigne says:

    You are touching so many more lives with your blog Susan , thank you for sharing….you are giving me peace of mind about this subject and erasing alot of my fears of death and pain.

    Liked by 2 people

  10. Betsy says:

    Great blog – thank you Susan! I am always trying to tell people about how GREAT palliative care is. There is so much resistance to the idea of it – I guess people just don’t want to give up their loved ones, and that’s what they think it is. But actually, what it has done for you is give you a better quality of life and more energy to do the things that are really important for you. I am inspired by this and so glad you wrote about it. Thank you again!

    Liked by 2 people

  11. lunavives says:

    Hello Susan! I found out about your blog by chance, although we’ve met in person before. As someone who recently lost a loving, curious and generous partner to cancer (someone who was a beautiful soul just like you) I really enjoy these reflections. We should talk more about death, the way we talk about life.

    I learned most of what I know about palliative care through his experience. I couldn’t agree more – – it is extraordinary what modern medicine can do to increase the quality of life of those in extreme pain. Palliative care sounds somber and scary, but I don’t know what we would have done without the fantastic team at the Notre-Dame hospital. They guided us through a difficult transition with compassion and humility. I doubt I’ll ever forget their names. It’s wonderful to hear you’ve found good people to help you navigate the transition.

    Thanks for sharing this ❤️

    Like

  12. Julia Bond says:

    Nick and I enjoy the time we spend together reading your blog. So happy to hear you are feeling good 🙂

    Like

  13. Pingback: Ask Me Anything #9: Fear | The Death Project

  14. jacobjslominski says:

    Hi Susan! Thank you for writing this. I am so glad that you found relief from your pain. However, as someone who has not been able to escape chronic pain pharmaceutically despite continued effort, I have to find value in it. Learning to live with, accept, and even love the pain I have now is in no way at odds with seeking pain relief treatment. They go hand in hand. My pain isn’t going away, and yet it looks as though I may live a long time, so I have had to find a way to live with grace and joy despite the pain. I just want to send a note to those for whom medication is not available or had not worked, that living and even dying well with pain is absolutely possible. Deep love can coexist with acute pain, as wild as it may seem. I have experienced it. And finding skillful means to alleviate it is also often the kindest thing to do.

    Liked by 1 person

  15. susanbriscoe says:

    Thank you so much for writing to me about this, and so eloquently! I do realise how fortunate I have been in responding so well to my pain medication, and I also know that may end. (I went through several days of intense pain recently while switching pain medications, and was much humbled). So many people, like you, must learn to live with chronic pain, and I am so glad you are able to share that this doesn’t have to mean a life without joy. A friend recently sent me an article about embracing pain in the moment (Practical Steps for Transforming Physical Pain into Spiritual Growth by Shinzen Young) that gave me some good ideas about where to start with that. I haven’t done any other research into this yet, but I am sure there are many other worthwhile resources. I have been working on another post about pain – if it fits, may I quote you in it?
    I wish you continued joy and grace and love, as well as less pain in a long and happy life! Thank you again.

    Like

  16. jacobjslominski says:

    Susan, I am so touched that you took the time to respond at length to my post. Thank you deeply. Yes, you may definitely quote me about pain! I will check out that article. I have heard of Shinzen Young’s book but haven’t read it. I can share a few resources that have been helpful to me if you’re interested. I’ve been trying to figure out how to blog about my experiences too, and your wonderful writing is an inspiration. As someone for whom death – or really, the loss of a future – feels threatening, I love reading your words about the beauty you’re finding in its shadow. I’m also sorry about your intense pain. Even though I’ve found some love and grace within it, I wouldn’t wish pain on anyone. I look forward to reading your next post about pain, and about whatever else you’re thinking about. Thank you for your beautiful wishes. I wish those for you too, continued happiness and love and less pain!

    Liked by 1 person

    • susanbriscoe says:

      Thanks, I would be interested in other resources. And you should definitely write about your experiences! You are a good writer, and readers appreciate that.

      Liked by 1 person

      • jacobjslominski says:

        Hi Susan,

        Thank you for your encouragement! 🙂

        Here are a few resources I’ve found useful:

        The first is about the biology of pain. Learning about how the brain produces pain has made it much less threatening, and made me more effective at relieving it. The SIMs and DIMs I find especially helpful (and fun)!
        https://noijam.com/2015/03/12/dim-sims/

        This talk about by Tara Brach has been really useful to me. Just listening to her caring voice often makes me feel better – but also the practices she describes in her talk for working with pain are powerful:
        https://www.tarabrach.com/pain-living-fully/

        Finally, I have found The Work by Byron Katie to be a profoundly helpful way to take the sting out of my beliefs and ideas about pain (and other stressful things and people in my life):
        http://thework.com/en/do-work

        There are several others, but this is what came to mind first!

        Best,
        Jacob

        Liked by 1 person

        • susanbriscoe says:

          Wow, thank you for all this! (I just found your post waiting for approval, which happens when there are links.) They look really useful. I’ll include them in another post so other readers can find them too. All the best to you!

          Like

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