Farming the Dying, or Not

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?

What do you think?

Sherry

Addressing the Culture of the Spirit

The health of the spirit is often overlooked. I think it's important to understanding the person you are dealing with.

You can throw one pill after another to stave off or placate the manifestations of illness but a hands on empathetic approach to understanding the human being underneath it all can make all the difference.

Writing prescriptions or handing someone a pill is easy. Understanding why they are not healthy, why they are in pain or why they do things to hurt themselves is not.

Do you understand the culture of the human spirit? You may be well traveled geologically but have you ever explored the culture of the elderly, the dying, the grieving or the abused?

It requires a few things. One is exercising the art of shutting up and listening, while another is the art of setting aside time. Another is offering comfort. How long has it been since you shut up and listened without offering an interpretation of what someone is trying to say? When was the last time you simply sat with or spent time with a friend, family member or stranger? Do you give freely of your hugs? Do you find out where a person hungers and try to help him find sustenance?

Life can be fast-paced and hectic but people invite the madness into their lives. Do you chase the material stuff in life? Do you work lots of overtime to "get ahead"? Do you pay other people to care for your kids so you can chase those things?

Do you put off seeing your parents or your family? Have you lost touch with people you care about? Do you think neighbors should remain nameless behind the doors in your neighborhood? Do you find coworkers annoying and avoid most of them?

Does it make you mad to hear about old folks dying because they were cold, hungry or didn't have enough food? Does it make you angry that children are abused? Does it gripe your ass that crazy people pull out guns and shoot up neighborhoods, schools and other places?

Or, do you philosophize that people should "suck it up" and get over whatever issues they have? Do you say "it's not my problem." Or, think ........."WHY DIDN'T SOMEONE DO SOMETHING?"

Each of us can make a difference. It's time to start. You can be a hero by just being there, listening and offering the comfort of touch.