Sunday, February 28, 2016

Why We Can’t Make Assumptions about Consciousness and Dying

By Lizzy Miles, MA, MSW, LSW

A little over a year ago I wrote a Pallimed article called, "We Don't Know Death: 7 Assumptions We Make about the Dying." Having knowledge of our assumptions is a first step, but what do we do with that knowledge? Since I wrote that article, I have further contemplated the “so what” factor of the assumptions to develop suggested interventions.

This article is the second in a series of articles where I will take each assumption from the original article and explore the concept in greater depth to include implications and possible interventions. In my last article, I wrote about the assumption that if you have experienced a death, you know how death happens.

Here is our next assumption: You’re supposed to be unconscious when you’re about to die.

First and foremost I need to emphasize that I did not go to medical school or nursing school. I am a medical social worker. My point of view on consciousness is based on my experiences with the dying.

Why do we think patients are supposed to be unconscious before they die? Because that’s how it happens in the movies and on television.

Even our prior experiences may lead us to believe this is the norm. In fact, research cited in the Oxford Textbook of Palliative Medicine states that excluding sudden and unexpected deaths, 6-30% of patients are conscious 15 minutes before death.1

In the hospices that I have worked at, we generally have not used the term conscious or unconscious. The Webster’s dictionary definition of consciousness is, in short, “the state of being aware.” I believe we refrain from using the term “unconscious” in hospice because we have learned from our experiences that even actively dying patients do seem to have an awareness of activities in the room, as evidenced by minute facial gestures. That being said, the more commonly used term in hospice is “non-responsive.” Does it mean the patient cannot respond? Not necessarily. It may sometimes mean the patient is choosing not to react.

My first awareness of this phenomenon of someone “responding” when they were “non-responsive” was when I was sitting vigil with my great aunt Alice while she lay dying. Her heart rate was down to 30 and she had not responded to us for days. The hospice nurse told us she could still hear us, so we talked to her. Given her vitals, we did not know why her death was so prolonged. As it turned out, she died the very second her chaplain walked in the room. None of us had thought to call the chaplain, but in hindsight we realized her faith was strong and my great aunt must have been waiting for the chaplain to arrive.

Another time, I was sitting vigil with a friend of a patient. The friend was sharing all kinds of stories about their friendship. The patient was not responding to any questions or comments we made for over an hour… until we started to talk about the patient’s dog. Then the patient’s eyebrow lifted and her mouth moved as if she were trying to talk. We knew that her love for her dog inspired her to want to express herself.

Here is where one of our hospice staff challenges comes in. We want to educate the loved ones that the patient is still able to hear, often until the moment of death. Unfortunately, sometimes loved ones are frustrated with non-response and will provide increasingly aggressive stimulus in an attempt to get a response from the patient.

I have seen loved ones lift a patient’s eyelids, pound on a patient’s chest and vigorously rub their arms. It is very sad to see and often happens when the loved one has not fully had a chance to process that the patient is dying.

Suggested Interventions: 
•  Always introduce yourself to patient when you enter the room.
•  Inform patient what you’re going to do before you do it.
•  Educate loved ones of patient’s ability to hear until they die. 
•  Inform loved one of the patient’s common need to withdraw inward.
•  Set expectations that patient may not respond and to not expect a response.

There are some hospice diagnoses where patients are more likely to be alert closer to death. Patients with end stage heart disease likely will have their heart just stop some time. I had one hospice patient who was laughing and joking with facility staff during breakfast, and then the next time they went in to check on her, she had died. We did not have any indication that she was near death. When a hospice patient dies unexpectedly like this, it can be a shock for the family.

Suggested Interventions: 
•  Educate loved ones of patients with heart disease of the possibility of sudden death so that they are prepared.
•  Encourage these loved ones to not leave things unsaid. 

Perhaps the most unusual “consciousness” scenario is when patients have extended periods of apnea and then are aware and communicative. This assumption article is inspired by my own experience with a patient I was with who would have 45 seconds of apnea and then wake up and squeeze my hand and try to talk to me. When his family was sitting with him, he was nonresponsive and not interactive.

While this article is primarily about patients who are conscious before death, there is an alternative scenario that is equally challenging to families. Some patients have been known to have weeklong periods of “unconsciousness” (non-responsiveness) where staff and family assumes they are transitioning to actively dying, only to recover and live for months longer. I have seen this happen at least twice. Both times were emotional roller coasters for the family.

Suggested Intervention: Do not let consciousness or responsiveness alone be your barometer for determining “actively dying” status.

This work that we do in hospice and palliative care is humbling. To provide the best care possible for patients and families, we need to share what we know, but also what we do not know.

1 Doyle, D., Hanks, G. W., and Mac Donald, N. (1999). Oxford textbook of palliative medicine, 2nd edition. Chicago, p. 983.

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and author of a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW 

Image Credit: "Intubated McDreamy" from Grey's Anatomy screencapture
Photo Credit: "Spud" by Christian Sinclair (CC BY SA 2.0)

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