Ed Gungor: On Death and Dying

PHYSICAL SIGNS OF A FAILING BODY

The Death and Dying Process

A Last Resort

I wish there were a place for gracious dying
A high place with a distant view
Where we could gather for a celebration
Of life and death and friendships, old and new.

I’d like a place where there would be good music
Good food and wine—and laughter, games and fun,
And quiet talk with friends, and good discussion
Of what will happen when this life is done…

-Helen Ansley At Age Ninety


When it comes right down to it, if we’re honest and willing to go there, most of us are at least a bit curious about the manner in which we will die. Many of us would even prefer to know specific details of our final moments. And, if we are caregivers for a terminally ill loved one, the more we know, the more equipped we feel to face each uncertain day. Because we have no role models to walk with us along death’s journey, no end-of-life midwife who has personally labored through the dying process, answers can be hard to come by. Many answers are simply beyond our grasp.

“Death,” it has been said, “belongs to the dying and to those who love them.” Just as in the birth of a new baby, the moment of death is such a beautifully intense event, that if an observer were to quiet himself long enough to listen to the unseen presence in the room, he would gain a glimpse into a grand celebration. The one who has died is the guest of honor and a great cloud of witnesses is the cheering section. Such thoughts are comforting, but they won’t wipe away every tear. Saying goodbye to someone we cherish is never easy.

Nurse practitioner Joan Furman who has devoted her entire career to providing care for the dying, as a young nurse had a near death experience. While in the hospital suffering with severe laryngitis, she was exposed to a lethal gas that caused her severely irritated throat to swell and her voicebox to close. She remembers feeling terrified, gasping for air, and then suddenly watching her own resuscitation efforts from the corner of the ceiling. Here’s how she describes the moment:

"My limp, unconscious body was on a hospital bed facing me, with two doctors and a nurse on my right side…I felt so at peace, so surrounded with love and safety that I had no desire to return to my body. In fact, I had a detached curiosity about it all. I liked it there at the corner of the ceiling…I understood with all of my being, not just intellectually, that I am more than my body. My body was a vehicle, and I had literally left. Being out of it produced less sentiment than trading in an old car."

Reentering her body, Joan felt tremendous fear, desperation for air, and wondered why it had to happen…why she had to go back. She soon thereafter recovered fully and chose to dismiss her experience as a hypoxic hallucination. It was only after similar stories began to emerge in medical journals that she allowed herself to trust what really happened. Now, absolutely convinced that life continues after the death of the body, Joan shares her story in hopes of easing the fears of her dying patients. She describes the process of death as a journey toward complete wholeness and permanent healing, something that we need not fear. Although for many, this is not the case.

American surgeon, author of How We Die, and professor of bioethics and medicine at Yale University School of Medicine, Sherwin Nuland, believes that our uniqueness in life extends to the way we die. As a physician, Nuland has witnessed countless deaths, each one happening in a distinct way. Some die suddenly and unexpectedly. Some die after a prolonged battle with a disease. Others, although it is technically unacceptable to label as such, simply die from old age. “Every one of death’s diverse appearances is as distinctive as that singular face we each show the world during the days of life.” Even in death, people hold true to their personalities. It is highly probable, therefore, that we will deal with our own dying just as we have handled all other challenges in life.

When we become familiar with the wide range of diseases and the innumerable outcomes of their ways, perhaps the dying progression will become less frightening and the decision-making process less “charged with half-knowledge, anxiety, and unjustified expectations.” Although we do not know the exact details of when and in what way death will occur, we have gained sufficient wisdom through observation to state with assurance that no one need enter his final moments with fear and pain . We do recognize the physical signs of impending death, but only God knows the specifics.

How Do We Die?

If we were to categorize death, the most simplistic way of doing it would be to say there are two kinds of death—a fast death or a slow death. Having a fatal accident or heart attack would result in a fast death when one is alive, then the next minute has died. A slow death happens after a prolonged battle with a terminal illness, or as a result of old age. Thomas Jefferson, at the age of seventy-one, wrote a letter to

John Adam who was seventy-eight at the time. The letter said, “But our machines have now been running seventy or eighty years, and we must expect that, worn as they are, here a pivot, there a wheel, now a pinion, next a spring, will be giving way; and however we may tinker them up for a while, all will at length surcease motion.”

There is not one system of the body that is immune to the aging process. Even cells with the capacity to rejuvenate gradually and eventually shut down. Medical advancements are tremendous, but many in the health care community, as Nuland says, “simply miss the point.” Scientists cannot eradicate the dying process; they can only prolong the inevitable.

In centuries past, people were accustomed to death because it visited them often. The general attitude was one of acceptance and ars moriendi or belief in the “art of dying.” During those days when symptoms appeared, the only choice was to simply let dying take it’s course and to do it in the best way possible—at peace with God. Physicians were ones who practiced the art of medicine, using their skills and knowledge to guide patients with dignity to their final breaths. Today, physicians in their rescue saving efforts have, by and large, lost touch with their limitations as mortals.

The philosophy of hospice care is different. Hospice workers emphasize dignity and do what they are able to alleviate pain, offering terminally ill patients the opportunity to live their final days to the fullest. Culturally, westerners are reluctant to talk openly about death, and are certainly reticent to accept a terminal report. It is a very uncomfortable subject because something in us wants to maintain control of our destiny. We value youth, beauty, competition and individuality. Death to us represents physical weakness, loss of power and uncertainty...none of which we appreciate. Our cultural bias interprets death as a failure.

Other more traditional cultures, however, treat death as an extension of living, bearing testimony of a well-lived life and as an opportunity to begin again. The dying are given space to resolve conflicts, to celebrate, to prepare for their final journey, and to acknowledge that their life had great meaning. Fortunately, hospice care has done a tremendous job in reshaping our ideas of the dying process and how one navigates it well. It is indeed possible to die well, if we so choose.

Barbara Karnes, an award-winning hospice nurse and end-of-life educator, is considered a hospice trailblazer in America. Having walked through the dying process with countless patients and even alongside her own parents, Barbara’s observations are now considered an authority when it comes to caring for terminally ill loved ones. Barbara teaches that dying a gradual death, whether from old age or from disease, is very similar to infant development. It happens gradually and with fairly predictable markers. Time plays an important role—death from old age usually takes longer than death from disease—but ultimately, the outward physical signs of the dying process are the same. A person dying of a disease may display such signs for months; whereas, a person dying of old age may display signs for years.

The Signs

With a terminal disease or old age, significant physical changes begin to develop one to three months prior to death. Such changes are often reflected by food intake, increased sleep and decreased social interaction. These three areas are fairly reliable indicators of the amount of time a person left.

The true reason we ingest food and water is to live. If our body is dying, it will have less and less need of either, so it naturally refuses both. One to three months prior to death, the body will begin weaning itself from food by rejecting proteins such as beef, chicken and fish. Next to go are fruits and vegetables. Eventually, the only kinds of food a dying person wants to eat are ice cream, puddings and cream soups. At the end, food will be rejected entirely. Upon entering this phase, death is only weeks away.

The final element to go is fluids. At this point, no bodily system is functioning as it should and is in the process of permanently shutting down. Many assume that dehydration is painful and causes significant suffering. This is a myth. When a person becomes dehydrated, calcium levels in the blood naturally rise. When calcium becomes too high, a person will simply close his eyes to sleep and not wake up. Most people, if given a choice, would prefer to die in their sleep. Excessive calcium in the blood allows that to happen. It is a God-given anesthetic that brings comfort to the dying and enables the process to occur painlessly.

Food and water connect us to the earth. By letting them go, the body is preparing to die. It no longer wants nourishment, hydration or the energy they provide. Naturally, it is very difficult to watch a loved one die of disease but to see him waste away from starvation or dehydration feels completely unacceptable. However, force-feeding and/or hydrating actually cause the dying process to become more complicated. The best response, no matter how emotionally difficult, is to simply let it happen. It is better for your loved one.

Increased sleep is a second indicator as to where a person is in the dying process. It begins with the addition of an afternoon nap and soon progresses to both an afternoon and morning nap. Then, the dying person naps in the morning, afternoon, evening and all through the night. Eventually he is asleep more than awake and becomes non-responsive. Because he is sleeping around the clock, it is very easy for him to become confused and disoriented, unable to distinguish between reality and the dream world. It is not uncommon for him to talk about things unfamiliar to us…people and places from his dream world.

The third indicator, social withdrawal, occurs two to four months prior to death. The dying person becomes disinterested in the outside world, from current events, sports, etc. This disinterest then turns into a withdrawal from people—refusing to see visitors and limiting interaction with family or close friends. It is as if the dying person is loosening his ties to the people in his life in order to move toward a new home in eternity. It is also likely he is doing this to protect himself from the emotional pain of saying goodbye. In his final weeks, he may even become antagonistic and push people away so “it won’t hurt so much.”

Sometimes it is helpful to read how more traditional cultures view the dying process. Although we do not adhere to Buddhist teaching, it does offer an interesting perspective as to how the body gradually shuts down.

The Labor of Dying

The process of dying is often compared to the labor women endure when bringing a new baby into the world. There is no magical length to the birthing process, nor is there with dying. Some women have quick labors; others may labor for a day and a half. “So it is with the labor to leave this world. Some of us get out of our bodies more easily than others.”

Labor to leave our bodies usually takes one to three weeks. Some of the signs that your loved one is in labor are: he sleeps with his eyes partially open rather than closed (keeping eyelids closed or open requires energy); his breathing patterns change (also known as start and stop breathing); when resting, he puffs by blowing air out through his lips; he becomes restless and picks at his clothing or sheets (a sign of fear); his body may develop a fever or become cold and clammy; mottling sets in (bluish black discoloration of the hands and feet that progresses to a ring around the knees, often with splotches across the back); incontinence or loss of bladder and bowels; and non-responsiveness.

Fear, pain and unfinished business make it much more difficult for a person to die peacefully. Fear can create tension and extend one’s dying process, as can unresolved conflicts or guilt. All of these are like ropes tying our loved one to the earth and prolonging his labor. Physical pain locks up the body and does not allow the dying to relax. By alleviating pain, your loved one is able to simply rest and let go.

There is no need to worry about drug addiction when a terminally ill patient is taking strong dosages of narcotics for pain relief. It simply is best to take medications on a regular schedule, rather than wait until pain becomes severe and very challenging to get back under control. It is much more difficult to manage this way. We gain nothing by waiting and it is unnecessary to suffer when medicine is available.

In the final sacred moments of dying, your loved one will be breathing very slowly. He will be non-responsive and his eyes will be partially open. His arm or shoulder may slowly move. He may make a frown. These small movements are usually followed by one or two long breaths. It may seem as if there will be more breathing, but then he will gasp and let out one or two final breaths, expelling the last bit of air in his lungs. And, then the end has come.

In the twenty-four to thirty-six hours prior to death, after days of labor, for no known reason, your loved one may appear to temporarily recover or rally. He may wake up with energy, request food, receive visitors, and seem to be doing much better. Then, his time to die comes and the hopefulness that he has recovered is gone. No one can explain why this happens. We can only contemplate. Perhaps it is God’s way of allowing us to have a few final good days together to say the things we need to say, and to remind ourselves that the path of death leads to a new day and complete wholeness.

Walking through the painful process of watching a loved one age or battle a terminal illness is undeniably heartbreaking. Yet, in the midst of the natural emotions associated with dying, “remember, the dying process is an inevitable and largely passive one. Massive intervention at the eleventh hour will only prolong a physically and emotionally painful process. It may eke out a few extra hours or even days of suffering for your loved one, but the end will be no different.” Each person ought to have the opportunity to die well and with dignity. The more we know about the process, the more likely we will be able to achieve that end. When we clearly understand the signs, wise decisions will help us make the very most out of the time remaining…a gift to our loved one and to ourselves.


Summary of the Death and Dying Process

Timeframe: Physical Stages of Dying

One to Three Months Prior to Death
• Withdrawal from the world and from people
• Decreased food intake
• Increased sleep
• Going inside self
• Less communication

One to Two Week Prior to Death
• Disorientation
• Agitation
• Talking with Unseen
• Confusion
• Picking at Clothes

• Physical Changes
1. Decreased blood pressure
2. Pulse increase or decrease
3. Color changes; pale, bluish
4. Increased perspiration
5. Respiratory irregularities
6. Congestion
7. Sleeping but responding
8. Complaints of body feeling tired and heavy
9. Not eating, but taking few fluids
10. Fluctuating body temperature hot/cold

Days or Hours Prior to Death
• Intensification of 1-2 week signs
• Surge of energy
• Decrease in blood pressure
• Eyes glassy, tearing, half open
• Irregular breathing, stop/start
• Restlessness or no activity
• Purplish knees, feet, hands, blotchy
• Pulse weak and hard to find
• Decreased urine output
• May wet or soil the bed

Minutes Prior to Death
• Fish out of water breathing
• Cannot be awakened