A little something about how we die.

So, you are curious about death?

What happens when we are dying. A palliative care/hospice perspective. Read on, its not as scary as you think, I hope.

First some background info. I work at hospice among other duties and have been doing it for over 5 years. I had my own personal experiences that moved me to this field and the most common question I get asked is: "How long does _____ have to live" followed by the most common request: " I want to make sure that _____ is comfortable". Over time as I gained experience and the more I read about this topic, I have come with the following explanations to cover both concerns. This topic is obviously huge and very technical. Below you will read my version of what I call my "death speech" and it truly is the speech I give the families and patients that request my counsel. Here it goes,

Human beings can go thru two different types of death
1) sudden/acute ( not explained in here)
2) Chronic.

For purposes of our discussion I will only talk about the chronic dying process.

In my opinion there are 4 big stages that I look for to try to predict death (prognostication). The 4 stages start slow but have a snowball effect and pick up speed as time goes by. The four stages are defined by a loss of function. Obviously if you are dying, you will lose the capacity to do stuff.

1st stage: loss of ability to get out of bed by your own foot. The patient is completely and CONSISTENTLY bedbound. They eat, pee, poop, drink in bed. They develop ulcers because they are in bed 24/7. This is not your typical lazy dude. These are people that cant even save their lives if a fire where to start in their room. This type of patient has 6 months of life or less. The loss of the capacity to ambulate is THAT important. Thats why you see doctors recommending you to move. Exercise people, its that important.

2nd stage. The patient stops eating and drinking. Again consistently. Not only they are not getting out of bed, they can no longer eat AND drink. This patients DO NOT starve to death. The body is dying and it rejects food, just like when you get sick, you dont feel like eating. In a morbid way, dying patients have a similar response. They dont feel hunger because the whole body is dying and your brain wants to focus more on maintaining some important functions like breathing and moving blood around. Your brain dont want to focus on having to digest food. Wasting a lot of energy processing food to obtain little gains. Other way to look at it, if you are bed bound, you are not burning a lot of calories. Your energy expenditure is low hence your energy requirements are lower. My biggest point here is that the patients enter this stage and DONT starve to death. This is NOT the time to use feeding tubes or IV nutrition. The body will not absorb them consistently and you will shortly produce swelling and breathing problems associated with the excess of fluids that are not digested. My recommendation is to always offer the patient's favorite foods and drinks but respect when they say they dont want it anymore. Try later if needed but respect the process. In terms of dehydration, yes, there is a slight dehydration process associated with the dying process but it is dehydration process that allows the patient to be leaner and facilitate some processes like breathing. Have you ever eaten/drank so much that you can barely breathe? Thats what happens when you have too much fluids in you. Your brain knows better and it prefers a slightly "dry" approach that prevents extra stress on your vascular system. Someone that is now bedbound and not eating and drinking has anything between a couple of weeks and a month to live.

3rd stage. The patient becomes unresponsive. Patient is almost comatose. Unresponsive to most stimulus. It is a HARD emotional stage because you as a family member lose the capacity to interact with your loved one. That makes death real. Until that point you have been talking about death and dying but you have not seen it face to face. Now death is becoming real. And it can be scary for you as a loved one. The patient themselves actually becomes very peaceful. Here is what happens. When the patient becomes unresponsive, in a sense the brain is starting to disconnect from the physical world. That means that it no longer responds to most stimulus and thats why they no longer respond to touch, temperature or voice. Thats heart breaking for the family but that same process also makes the patient peaceful and comfortable as they are no longer able to feel pain, anxiety, problems breathing, etc. Those stimulus are still trying to reach the brain but the brain chooses not to pay attention. Patients in this stage have anything between days and a couple of weeks to live.

4th stage. Active dying stage "weird stage". I call it the weird stage because you as a family member will see, hear and feel things that make you uncomfortable. The patient per se is actually quite comfortable because of that brain disconnection that starts to occur in the third phase. Family on the other side, not so much. You will see coloration changes by body areas ( blue lips, fingers, toes) red legs, black and blue stomach area. Then 2 hours later everything looks fine. 4 hours later things come back again without rhyme or reason. One side of the body is ice cold and the other is scalding hot. Temperature changes by limbs. Same thing. No rhyme or reason. You can hear gurgling sounds ( saliva in the back of the throat as patient cant swallow correctly anymore) this is NOT "water in the lungs". The patient is NOT suffocating or "drowning" in fluids as the fluid is just saliva and it is not in the lungs at all. The patients can develop fevers spontaneously and shallow breathing patterns. Eventually the patients can develop apnea ( long pauses between breaths). All of this because the heart, lungs and brain are not talking to each other effectively. All this sounds scary but the patients do not suffer it at all. A patient in this stage has minutes-hours-days at the most.

A couple of things:
1) death is inevitable but it is usually not miserable if natural death is allowed and respected.
2) its not black and white. People most likely will drift back and forth between stages but their overall long term trajectory is one of decline that goes deeper and deeper into these stages.
3) nobody is that good at prognosticating how long someone has. Hence why we need to provide ranges of time (ie: days to weeks) giving concrete numbers only create poor expectations.

4) of course there are exceptions but most people that have a natural death follow this trajectory. By natural death I mean deaths from multitude of conditions ( cancer, COPD, dementias,etc) but that are not artificially extended by ventilators, IV fluids, CPR, ICU stay etc.
5) you may argue that a family member or a friend of a friend you know died in the hospital screaming, kicking and needed to be tied down to the bed because they could not control him and he still died. Yes, that happens often unfortunately. Again there are exceptions. In these cases the main issue usually is the fact that you are not allowing a natural death by (for example) intubating a patient or providing CPR with cardioversion. In other words you are overstimulating a brain that is trying to die. So, the brain responds accordingly by showing its ugly side ( agitation, screaming, delirium, etc) and the patient still dies. Except that it is a painful, traumatic death. The type that people remember and runs from.

6) TV is not a great place to learn about death and dying because it is not how we really die. A natural death is peaceful and may I say, boring. That would not produce good TV.

7) last points. Im Sorry for the long post. I just needed to put this out there. Many families and friends have requested me to do something like this before but I didnt know what platform to use. I decided to do it today because of recent personal issues that I have struggled with. I sincerely hope that this information helps someone. I know this is not a topic many people like to talk about. This in some sense is more taboo than sex, race and politics. Because we are scared about talking about death. And we are scared because we dont know much about it. But if we open the dialogue and learn the truth about this process, it looses its scary grip on us. I hope you all have long, fulfilling lives. But if (when) you are confronted with this situation as a family member or a patient, I hope this helps take some of the anxiety out. I respect anyone that thinks differently, this is just based on my years of training and experience. I skipped important pathophysiological processes to ease the discussion but this pretty much sums it up in simple terms. Lastly, if there are any hospice/palliative medicine/ICU staff, chaplains, doctors,nurses,social workers, nurse aides, CNAs in here, thanks for all you do you all are tha real MVPs. Peace to all.