I don't mean this in any rude way (but because I have no knowledge about what being on life support implies go for the patient) but how does being on life support include the possibility of dying without dignity?
Not rude at all. This is a VERY good question, because most people honestly donāt know. And Iām incredibly happy that you asked!
I going to explain in the most straightforward way possible, the way I tell patients and their families.Ā
So, being on life support is not gentle, nor is it comfortable. Being on life support requires machines becoming part of your life.Ā
Letās focus on intubation. Your breathes are controlled by a machine, via a hard, plastic tube that must be placed down your throat. Plastic isnāt meant to stick in your throat. So it causes inflammation, irritation of your throat. People who get actually get extubated will tell you, it is VERY uncomfortable, even with the sedation and pain medication provided. Intubation also carries itās own risks. It puts you at risk of pneumonia, lung damage, and if placed for too long, your muscles weaken because you are not exercising them to help take your own breathes.Ā
Okay, letās now talk about the connection of dying with dignity.
I first want to say there is nothing inherently wrong with life support technology. For those who have diseases or trauma that have a high chance of recovery, the employment of this technology is only temporary. They help make recovery possible.Ā The frequent poking of needles to insert catheters, the constant suctioning of sputum from oneās mouth, are worth it because the good (recovering and going back to your normal or near-normal self) outweigh the bad that the technology causes. The only time these life supportsā good do not outweigh the bad is when a patient does not have a good chance at recovering a meaningful life after all of these interventions are through.
Imagine yourself in your loved oneās position. You are already very ill and weak, that is why you are in an ICU. So you already feel poorly. Being on a ventilator also means being sedated, because it IS so uncomfortable. So imagine yourself, in and out of a state of wooziness, with this hard plastic tube in your mouth, with at minimum your wrists restrained in soft foam cuffs, to protect yourself from you; in case you flip out and try to yank the tube out of your mouth (this is very common, because the tube is uncomfortable!) You canāt eat, not regular food. Nutrition is usually deliver as a liquid through a tube place down your mouth into your stomach, or through a drip into your veins. You must urinate through either a Foley catheter or in a diaper.Ā
When these machines and all of these complications and invasions, when this becomes your life and becomes a permanent fixture of the patientās survival, this is where patient input and patientās family input is incredibly important. All of these interventions: sedation, intubation, restraints, foley catheters, nutrition through tube feeds, just being in a hospital with other people who are ill, carries risk.Ā
We need you to help tell us what you think is a meaningful, fulfilling life. If life isnāt worth living if you canāt eat solid food, I want to know. If life isnāt worth living if you can never take a walk with your own two feet again, I want to know. I NEED to know. Back to my original post #202 regarding the angry cousin: he was mad at me because he thought I was telling them to decide if she lived or died. That is not what Iām asking. Iām asking about WHAT LIFE MEANS TO THE PATIENT. Because if you can still find meaning in life, bed-bound, sedated, intubated, restrained for your protection, etc. I NEED TO KNOW. If you donāt think so, tell me. I donāt want to cause harm, I donāt want to keep you from living or dying on your terms. Tell me what harm means to you, or what harm means to your loved one. Tell me what they think it means to live, what they think a good death is. If you love your loved one, you also donāt want them to be in prolonged pain that has minimal results. You want to respect their decision, honor their wishes.
So that is why itās not the technology that subverts dying with dignity. Itās the notion that prolonging physiologic signs we call life is the equivalent of living.