I got to talking to a new friend the other day and he shared how his father had lingered in a comatose and vegetative state for years. He had stiffened up and his body had begun to rot with widespread infection and skin breakdown. Is it PC to say that? No, it's not. But is it true? Yes, it is.
I've taken care of many patients who are in the condition of existing here for a heartbeat and a breath but who have had no meaningful movement or utterance in years. Is this not a cruel way to exist? The usual solution to setting on this path is to not make your wishes known ahead of time or to fall into the hands of people who really want to help. The pressure is placed on family to allow the placement of a feeding tube and possibly IV's. After all, you wouldn't want Dad to starve now would you?
There are various levels of consciousness and volition in the dying patient of course so one patient may just lay there and not be able to move and others may have dementia and move a lot and do things to hurt themselves inadvertently. There are many shades in between.
As death draws near the appetite diminishes and the desire for water is not keen. In someone who is well onto dying of an illness such as cancer the usual litany of "life saving measures" may be an unfair burden on the dying.
Performing CPR may splinter the bones in the chest. That sounds bad, huh?
Feeding tubes are often placed through man-made openings into the lower abdomen and are portals for infection, especially in someone who has little defense left. They feel alien and weird and it is not uncommon for patients who are confused or experiencing altered mentation to simply tug on them and dislodge them. Same with IV's and catheters. This can lead to further procedures and discomfort to put them back in place.
The consequence of the feeding tube is increased calorie intake but it usually ends up causing significant diarrhea and this puts the skin at risk of break down which then can lead to infection and sepsis. Also it puts the dying person at risk of aspiration if the head of the bed is less than 30-40 degrees. Once tube feeding solution gets in the lungs -and it can- everything falls apart. Chemical pneumonia in a compromised person is very hard to combat.
Those given IV's or parenteral/IV feedings (less common but possible) are exposed to fluid overload in the lungs as the body systems struggle to get rid of extra fluid. Fluid in the lungs makes it hard to breathe. The glucose solutions in parenteral feedings are so high that blood sugars are commonly checked around the clock in institutional or hospital settings. Prick, prick, prick.
It's hard to be a "good" dying patient and not pull out tubes and endure the sticks and the raw skin that develops from the various interventions. In some settings the next step may be using restraints to keep the person from pulling out the tubes or otherwise "messing things up." In the hospital I worked in I was a restraint trainer for a short time and then our hospital went to a policy of not restraining patients at all except in the absolutely most extreme cases.
It made for an interesting day walking into a room and seeing the patient with her catheter coiled up in her hand, or strangely, stuffed in the pillow case. It made for a heart-wrenching day when patients coughed up tube feeding solution.
Is this how the end of life should be? Is this what you want for yourself or your loved ones?
Death can be a kinder experience for many people. We have to have the conversations with our families and doctors and know what the options are. Hospice care can be delivered in a multitude of settings including the home, the hospital, freestanding outpatient facilities and freestanding hospice units.
Is a dignified, kinder death what we want to harvest at the end of our lives or do we want to be farmed out to care that is unlikely to cure and quite likely to cause pain and discomfort? Do the extra moments of "being here" deserve the sacrifice of dignity and self-determination?