Responsiveness at the end of a person’s life
By Russ Alexander
Background
This article was shared with my fellow hospice volunteers.
Introduction
The dying process is an entirely natural one that results in the cessation of the functioning of the body. The body’s physical functions are ceasing their work. The anecdotal evidence is that the sense of hearing continues until the last breath. This idea was confirmed in a recent study1. However, every one of us is more than a physical body. We are also mental, spiritual, emotional. Couldn’t these other elements of humans remain intact and functioning? What if thinking continues to the last breath too!
I challenge you to consider: What if the mind can think but the brain, together with the mouth, tongue, and other components of speech, can no longer produce speech, sound, or even any other commonly used method of communicating with the outside world?
Or, here is an even more paradigm-shifting idea: What if, though the body is weak and dissolving, the “Spirit/ mind/Soul/essence/” is strengthening, growing, and thriving, as the dying human recognizes she/he/they are approaching the transition to whatever comes after this life?2
For this reason, I believe that the dying humans on our service who need special attention are those who are in a minimally responsive state (“MRS”). There does not appear to be a consensus around a clinical definition of MRS. One study attempts to deal with that issue:
The most important issue related to minimally conscious state lies in its criteria: while behavioral definition of minimally conscious state lacks any direct evidence of patient’s conscious content or conscious state, it includes the adjective ‘conscious’. I discuss this major problem in this review and propose a novel interpretation of minimally conscious state: its criteria do not inform us about the potential residual consciousness of patients, but they do inform us with certainty about the presence of a cortically mediated state.3
How do we recognize an MRS human? When we knock on her/his/their door, they do not respond. When we walk into the room and look at the MRS human, they appear to be asleep. They do not respond to calling their name or voice commands. They may respond reflexively when touched.
I believe many volunteers are likely to spend minimal time with MRS humans because we think our presence brings minimal comfort/support to the MRS human. Being in a room with an MRS human can feel awkward. Why? Because of the silence. I offer a completely different view. I find silence to be its own form of therapy - both for me and I hope for the MCS human. In trainings, I have heard it called “presence.”
Explanation
Where does thinking happen? Is it in the brain? Is it in the mind? What is the difference between brain and mind? The brain is an organ of the body, located in the head. Where is the mind located? Is it in the brain? Is it throughout the body, maybe in every cell of the body? Does the mind have separate existence/substance? This link is to a discussion of this topic.
What if the mind is not “in” the body at all? All of this leads to the hypothesis: what if thinking/feeling/emotions are still completely intact or only partly diminished until the last breath? A significantly physically-diminished body may not translate into a mind diminished to the same extent as the body. What if the mind can function “normally” even as a human approaches the end-of-life, when the body is practically dead? Or - here’s a wild concept- what if the mind of an MRS human is uniquely keener, more astute, and heightened because the “distractions” the mind experiences from sensory inputs go away?4
The implication of this hypothesis is that the mind of the dying human may possess a degree of awareness, self-awareness, and even be able to process sensory inputs. The anecdotal evidence is that the sense of hearing remains until the last breath. What if the mind can also process input from other senses too (touch, smell)? What if the mind is aware that its body is no longer functioning; that it is dying? What if the mind functions normally while the body is tired and spent?5
Why is our conclusion about the accuracy of this hypothesis important? Because of the implications for how we treat the MRS humans in our care. My goal with an MRS human, which I invite you to share, is to interact with them as if she/he/they can hear me and/or sense my presence. Meaning, I may sit in silence, and/or I read to them, talk to them, play music for them. Let’s not isolate them because she/he/they appear to “lack awareness.” Let’s not leave them alone.
So please, spend time with MRS patients. Sit with them, talk to them, read to them, turn off the TV and leave music playing for them. You too might benefit from the silence therapy! I rarely know the tastes of our MRS patients. I simply bring a book of poetry with me into the rooms of MRS patients and read a selection. Please continue to provide stimulation even though you see no response. Your effort may, in fact, bring a moment of joy to the dying human’s last breath (and perhaps beyond …?). And one more thing. You may help families of our dying humans understand this possibility by your actions toward the MRS human. This may lead to families modeling your behavior. Adding more joy to the dying person.
1 Blundon, E.G., Gallagher, R.E. & Ward, L.M. Electrophysiological evidence of preserved hearing at the end of life. Sci Rep 10, 10336 (2020).
2 Personal conversation with an experienced hospice nurse, August 2020.
3 Lionel Naccache, Minimally conscious state or cortically mediated state?, Brain, Volume 141, Issue 4, April 2018, Pages 949–960, https://doi.org/10.1093/brain/awx324
4 Personal conversation with an experienced hospice nurse, August 2020.
5 Elisabeth Kubler-Ross, On Death and Dying, (New York: Macmillan, 1969), 144. Here is how EKR said it: “the second … lesson, was never to classify anyone as a so-called vegetable even if they appear to be nonreactive to many stimuli.”
