I find myself in another paradoxical debate. I have made my best attempt to find adequate palliative care research being done on managing end-of-life secretions (“the death rattle” people often refer to), and I cannot say I have read sufficient empirical studies that convince me the palliative care community has done its’ job to reduce this troubling symptom. For families, this distressing symptom heralds a person’s last hours or very few days of life, and is frequently reported as a very upsetting memory for loved ones at the bedside of the dying.
An ongoing debate is whether to use pharmacological agents to reduce secretions coinciding with other interventions, such as physical management (repositioning) and ensuring good communication with family regarding the “normal dying process”.
I keep reading this statement, or something like it in various forms, in nearly all research addressing secretions at end-of life: providing “an explanation for patient’s relatives to reassure them the patient is not distressed by (but what may be distressing for their loved ones) the upsetting noise of death rattle”.
Firstly, I wonder how do we ascertain that the dying patient is not upset, when they are non-responsive? Because we professionals may not observe specific changes in respiratory effort, or other physical observations, do we actually know that our dying patients are not affected or bothered in some part of their being about the “death rattle”? Or perhaps they have an awareness of their loved ones disturbance by it? They cannot come back to report to us that those last few days of life were distressful and they wished we had managed their secretions sooner, or better, or done SOMETHING besides tell the family it is a “normal” part of the dying process.
There are many “normal” things during dying that we try desperately to mitigate (things like odors, incontinence, urinary retention, pain, anxiety, restlessness, to name a few) and no one makes statements that these things are not some form of suffering for the patient, simply because they are not able to say so, or they are so close to dying that we no longer worry about treating these symptoms.
Secondly, I have actually read that hospices are not treating pharmacologically due to the cost of the medications, since there is this ongoing debate “to medicate, or not to medicate”. How convenient. How appalling. That a hospice would consider cost-savings and “normalizing” the symptom of terminal secretions because there is a debate in the ranks is NOT justifiable. The studies that have been performed have a number of issues that need to be addressed before they should be heralded as empirical evidence. Please, all of you who keep repeating that “there is no evidence that a pharmacological approach to terminal secretions is helpful, and may even be harmful” —re-read these many studies carefully, and stop quoting past studies that need to be reevaluated for true evidence-based practice and clinical significance. We might not know emphatically that no pharmacological treatment is the best approach. There is more research needed to be sure we are not minimizing the suffering for family, and potentially that of our patients.
Results of the SILENCE trial: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8493437/
Good points, Amy, about how hospice nurses interact with families, especially in the run-up to end-of-life. Obviously, end of life noises is truly remembered by hands off and hands on family caretakers. Good practice that bears some repeating is Symptom Expectations and what we can do together to “manage” or ameliorate what’s not necessarily bothering the dying person. Most people bothered by the death rattle, I would venture to guess, remember from reading 19th century books and watching movies, that the end is near and that death is creepy. Some people more than others just need a death doula. Thank goodness my demographic territory are not people like that.
I too talk about the pros and cons of hyoscyamine, positioning on the left side and wiping with the head of bed down all the way, and point out that someone who’s lost the swallow reflex probably doesn’t really care whether saliva is pooling in the oropharynx.
Quibbling about hyoscyamine costs, however, is new information for me. I haven’t heard about it, yet, but now will be watching. Our hospice business folded into a umbrella organization based in Texas lately, so it’s anyone’s guess. We have been getting one and only one comfort box bisacodyl suppository, shrinked in size, from our pharmacy, who claim a “national shortage” but I think is sheer economics, speculating on its non-use. I simply ask for six more with many refills as soon as I use the the one.
Anyway, congratulations on substantive post. I look forward to hearing from you anytime you get around to it.