Legally Ensuring Humane End-of-Life Care

by Mark Price, R.N.

Life Legal intervenes in many cases involving the decision to withhold or withdraw nutrition and hydration from a patient—usually someone with an injury, illness, or disability. Often, the patients are in their thirties and forties. They don’t have an advance healthcare directive or other document stating their wishes in the event they are not able to make their own health care decisions.

For example, Tabetha was only 32 when she suffered a heart attack that left her incapacitated. She could not speak and could only respond by blinking. Less than 48 hours after her heart attack, a decision was made to place Tabetha in hospice care without nutrition and with minimal hydration. John, Tabetha’s fiancé, called us and begged us to help save Tabetha from death by dehydration and starvation. He could see that Tabetha’s condition was improving and that she was trying to speak. Still, the hospice doctors refused to change course.

Life Legal connected John with a local attorney who went to court to fight for Tabetha’s life. The court ordered the reinstatement of Tabetha’s nutrition and hydration and her condition began to improve. Within a few weeks, Tabetha had made nearly a complete recovery!

She is not the only one. We have seen many similar cases. Earlier this year, we represented the boyfriend of a young woman who had a severe asthma attack. The lack of oxygen resulted in a brain injury that rendered her completely disabled. She was dependent on a ventilator and a feeding tube. Doctors said she would never recover and

never breathe or eat on her own and

made plans to remove her feeding tube. Last week, I received a text from the boyfriend saying “She drank a whole bottle of water on her own and she is just an incredible girl. She handled it. She is beginning to speak!”

In these and other cases, we were able to successfully get court orders requiring the person to receive nutrition and hydration. But what happens when the plan to remove food and water is carried out?

Starvation occurs when a person is deprived of nourishment to sustain bodily processes and organ function. The rate of progression of symptoms varies on the length of time a person has been deprived of sustenance.

The first changes are usually digestive. Initially, the hunger sensation is notably increased and there is a “ravenous” need for food. This may last for several days. Pain develops in the stomach followed by digestive issues. Thirst also rapidly increases. Whether we realize it or not, there is hydration in our food. The process, stated simply, is that the body begins a series of adaptative phases that ultimately end in a painful death.

Physiologically, the body wants sugar to use for energy. It also requires essential

nutrients to maintain bodily function. When starvation begins, the body relies on the sugar (glucose) that it has stored for fuel. The first contributor is the liver. The liver will release what little sugar it has in store for cells to function. When those sugars have been depleted then insulin production will begin to slow.

Insulin is the enzyme released by the body to regulate glucose levels in the blood and maintain proper cell function in the vital organs (brain, heart, lungs, and kidneys). When the body needs sugar, getting rid of it is not an option. Thus, insulin stops. Another source of glucose-type energy, called glycogen, is stored in fat reserves in the body. Simply put, the body will start to use glycogen stores to fuel the vital organs. This begins the wasting of body fat. This is when a victim will look drawn through the eyes and cheeks.

Eventually, there is no more sugar (glucose/glycogen). What next? Protein and amino acids become the next source of fuel that the body uses to create sugar in a process called gluconeogenesis. This can only happen with one end result.

The muscle tissue is consumed by the body for its own survival. The process of breaking down proteins causes high levels of acid production that force the kidneys to work excessively hard. This can cause labored and rapid breathing. The drop in sugar levels can cause cloudiness of thought, restlessness, and even hallucinations. In the end, the absence of vital nutrients, such as iron, will cause severe anemia and loss of blood volume. The heart will struggle to beat fast enough to move the lower levels of blood to the body tissues until the result is cardiac arrest—which is the leading cause of death in starvation.

Turning quickly to dehydration, consider the absence of fluid in the body. The human person is composed of roughly 65% water. Water is responsible for

the balance of electrolytes. I’m sure we are all familiar with Gatorade. In its simplest form, Gatorade is an electrolyte supplement drink. The three main electrolytes are sodium, potassium, calcium. There are others, but I’ll focus on these three, as they are responsible for maintaining electrical impulses along the roughly 100 billion nerve cells in the body. It’s quite a balance. Like I tell my students, we are fearfully and wonderfully made. But when the body becomes dehydrated, a harrowing cycle begins. Water and electrolytes must remain in a perfect balance to keep the vital organs functioning. When water content decreases, the concentration of sodium, potassium, and calcium increases.

Let’s start with sodium. Sodium’s main function is in the kidneys. Too much sodium in the kidneys can cause “crenation” of the cells where water

is drawn out of cells to hydrate kidney tissue. Eventually the parts of the kidney that filter our blood become damaged. The unfiltered toxins remain in the bloodstream and the victim becomes septic (infected blood).

Potassium is responsible for pacing the heart. When the heart has a problem pacing, it beats irregularly. This is called dysrhythmia. When the heart is out of pace, it eventually will fall into “arrhythmia” which means the heart stops beating altogether.

Calcium is also at work in the heart but also in the skeletal muscle. It manages contractility. This is the squeeze that your muscles can make. If there is a high level of calcium, the muscles become overly relaxed and do not squeeze or “contract”. This means that the heart becomes weakened and will eventually not be able to pump.

The breakdown of these elements in the body are the sentinel moments in the dying process from dehydration. It is a miserable death. The oral membranes become dry, the lips become painfully cracked and flaked. Blood vessels rupture in the eyes and under the skin due to weakness dehydration causes in the capillary walls.

Doctors who advocate for withholding nutrition and hydration often say they want their patients to have a “humane” death. But killing by starvation and dehydration is not humane; it is barbaric. In other contexts, intentional starvation is a crime against humanity.

Purposefully removing food and water to end a patient’s life changes the role of physician from healer to instrument of death. It is nothing less than an attempt to override the sovereignty of God, the Author of life.

Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them. —Psalm 139:16