understanding the suffering associated with dying

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Palliative care physician Dr. Mike Harlos gives advice to other palliative care doctors and nurses on how to best support people who are dying, as well as their family members and friends who may be going through the process with them. I love Dr. Harlos’s wisdom and gentle manner, which I have also featured here, and I wish I had known of these videos before I sat by my mother’s side as she took her final breaths.

The thoughts Dr. Harlos shares in the three-minute video below won’t stop the pain of being by the side of someone you love as she or he nears death, but the reflections and advice might alleviate the pain a little; they might ease the suffering overall, and thus allow for a deeper, richer and more meaningful final life experience.

Final hours at the bedside: Is my loved one suffering? from Canadian Virtual Hospice on Vimeo.

Here’s a transcript of the video:

“In palliative care, we don’t treat pain or we don’t treat shortness of breath, we don’t treat nausea; we’re treating suffering. We’re helping people with suffering. Suffering is the total experience related to a certain issue. So the person with pain is experiencing a physical symptom, but there’s also a meaning to that symptom, there’s an emotional context to that symptom, there’s a spiritual context, there’s a cultural context and that whole package is the suffering.

Sometimes the suffering is mostly physical, and sometimes it’s mostly spiritual or emotional or cultural and sometimes it ripples out to others in the room, and you can actually sometimes be aware of the total suffering in a room. So when someone changes, when someone is declining, it’s often seen that this person is suffering, even if they look comfortable. In fact families might say in the same breath “he had a good night, he looks good now, I think you’re on top of the pain,” and there might be a pause and then they might say “how can you let him suffer this way? You would not let an animal suffer this way.”

That sounds contradictory, and how I would try to discuss that is to say “I understand that this is really difficult to be part of and to watch. You’ve just mentioned that he looks comfortable, so I’m wondering, I’m wanting to hear more about what you’re seeing as suffering. Sometimes when people describe that they’re describing the total suffering related to this circumstance and that includes what he’s going through and what you’re going through. And I think he’s comfortable, and I’m wondering how we can help you with what you’re experiencing, which I think is contributing to what you’re feeling as his suffering.”

Also I think what people are describing in that situation isn’t so much his physical comfort, it’s the huge gap between who he was and who he is now. And often in the last few hours of life particularly, there are physical changes that happen that you can’t change. Like people lose weight, their skin colour changes because there is not enough oxygen being circulated, they become cool. And I think it’s important to make a distinction between who this person is in their spirit or in their soul, versus the physical changes that are happening to the shell of that person because people might see those changes and think of it as suffering.

Sometimes even the breathing pattern is changed and it almost looks like they’re struggling for air because they’re taking deep breaths, or periodic breathing, and there’s a gasp, and really what’s happening is that their regulatory centre for breathing is changing and becoming weaker so the breathing is erratic and there’s a long pause, and then there’s a big catch-up breath which then may be seen as he’s “gasping.” So it’s important to be aware that some of those physical changes don’t relate to the experience that the person is having. It’s simply the way the body is changing in a very physiological or biological way.”

Thanks again for this palliative care advice and wisdom, Dr. Harlos.

3 wise thoughts on being with someone you love as they die, which also apply to being with someone with dementia as they live

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2 Comments

    • M. Susan Macaulay on

      Yes WritersDream, I think so too. I hope I have somebody like Dr. Harlos my my side when I die.

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