Ed Gungor: On Death and Dying

The Grief Paradigm

"I tell you the truth, you will weep and mourn
while the world rejoices.
You will grieve, but your grief will turn to joy.
A woman giving birth to a child has pain
because her time has come;
But when her baby is born she forgets the anguish
because of her joy that a child is born into the world.
So it is with you: Now is your time of grief,
but I will see you again and you will rejoice,
And no one will take away your joy."

John 16:20-22


A Time to Grieve

Grief is a difficult concept to comprehend because—far too simply put—it’s painful. We would prefer for it to pass by as quickly as possible, or better yet, be something more along the lines of a singular response to a loss followed by a short period of sadness. But, truth be told, grief is much more complex than that. It is as diverse as the people who bare it. It takes on many expressions and cannot always be contained in a small box of systematic phases. Rather, “grieving is the entire emotional process of coping with a loss, and can last a very long time.” It hurts.

Grief, according to scripture, is a part of the human experience. We come from the land of broken toys where we wear out, we break and we die. Loss is inevitable in our land, just as labor and delivery are inevitable to a woman full term with child. We labor through a dying process, we die, and then we, according to Christian belief, live again. This place of grieving between death and resurrection is a painful and lonely. Nevertheless, it is part of our journey. Each of us will walk through the “valley of the shadow of death” as we say goodbye to a loved one, and when we ourselves die. Yet, our hope in the midst of unwelcome grief is that our pain will one day carry us to a place of eternal and unquenchable joy…a joy no experience nor person can take from us.

Learning to grieve well is a life-long process, just as is persevering under hardship. Grieving well through a full spectrum of emotions requires gentleness and patience with our selves. We cannot expect pain to simply disappear overnight; it takes time. There is no single answer to our grief; nor is there only one way to grieve. We each process experiences differently. The common denominator though is that every one of us needs support and understanding. Attempting to go at it alone and unprepared will only prolong the process. Grief can be a very lonely road, so we need to know our loved ones are with us. And, it’s helpful to seek out knowledgeable professionals who are able to provide information and definition to our experience. These two positive elements create an environment for us to grieve well.

To clarify, it’s important to note that the terms grief, mourning and bereavement are often used interchangeably; however, each has a different meaning. Grief is one’s inner and personal experience of and response to loss. Mourning is the outward expression of that grief, in addition to cultural and religious customs and rituals surrounding death. Mourning is also defined as the process of adapting to loss and adjusting to the death of a significant person. Bereavement refers to the state of having suffered a loss and to the experiences that follow the death of a loved one. It is the time after a loss during which the person experiences grief and exhibits mourning.

Grief is a “process that occurs over time and involves a wide range of emotions, as well as thoughts, behaviors and physical sensations.” It is normal to feel “a sense of shock, emotional numbness, sadness, despair, anxiety, guilt, loneliness, helplessness, relief and yearning.” Grief affects our entire being. It would not be unusual to think that our terminal news is inaccurate, that it couldn’t possibly be happening. Or, to feel confused, disoriented, have trouble concentrating, or even temporarily think you are “going crazy.” Tightness in the chest and/or throat, nausea, dizziness, fatigue, vulnerability, trouble sleeping, uncomfortable in social settings, irritability, aggressiveness, restlessness, lack of interest in everyday affairs…all of these are very normal responses to a loss.

The Lance Armstrong Foundation, www.livestrong.org, provides an informative perspective on the concept of loss and how it affects our whole persons. Losses impact our physical bodies, our emotions, our relationships and well as, in practical terms, our finances. Such losses are spelled out in the following chart:

Physical Losses
• A part of your body or a body function
• Changes in your ability to have sex
• Energy
• An ability or skill to perform certain activities
• Physical comfort
• Fertility

Emotional Losses
• Sense of security (in your health, in your future)
• Sense of control or independence
• Self-esteem or sense of identity
• Self-confidence
• Goals, hopes or dreams
• Faith or spirituality
• Your sense of life as safe and predictable
• Habits, such as changes in daily routines, or life “the way it used to be”

Social and Relationship Losses
• Relationships with friends, family members or co-workers
• Sexual relationships
• Your ability to have your own biological child
• Loss of certain roles (For example, you can no longer earn money for your family, or you can no longer prepare all of the family meals.)
• Loss of other terminal friends

Financial Losses
• Job or job opportunities
• Financial security
• Insurance
• Ability to work

Throughout the remaining pages of this chapter, we will focus our attention on the term grief as it relates to our inner and personal experiences as patients responding to a terminal diagnosis. It is our hope that these honest, although painful, discussions will enable us to navigate through our final acts of living with dignity, peace and hope.

Elisabeth Kubler-Ross

A handful of researchers over the past 50 years or so have helped to define grief. They have given words to our experience by collecting and categorizing common responses to tragic personal loss…responses that are as innate to human beings as breathing.

Perhaps the most well known thanatologist, Elisabeth Kubler-Ross, in 1969 published a book titled On Death and Dying: What the Dying Have to Teach Doctors, Nurses, Clergy and Their Own Families. The book is a collection of research that Kubler-Ross and four theological students gathered by observing and interviewing terminally ill patients. From this research, she developed a five stage grieving paradigm, which articulates common occurrences of terminally ill patients. It also clearly communicates how other tragic personal losses—the untimely loss of a job, a divorce, drug addiction, etc.—can create instances where grief is present.

After hundreds of conversations with terminally ill people, Kubler-Ross noted five phases of grief that were frequent among the patients:

1. Stage One: Denial and Isolation
2. Stage Two: Anger
3. Stage Three: Bargaining
4. Stage Four: Depression
5. Stage Five Acceptance

These phases, she claimed, do not necessarily occur in the order listed, nor are all of the stages encountered by every patient. However, according to her observations, each patient will at the very least go through two of these stages at some point in his journey. “Often, people will experience several stages in a ‘roller coaster’ effect, switching between two or more stages, returning to one or more several times before working through it.”

Kubler-Ross described these five phases of grief as “coping mechanisms” that commonly overlap as we manage our loss. This process is a highly personal matter; therefore, words such as “you should be over this by now” or “you’re taking too long,” or “you haven’t waited long enough” ought to be cautiously and meticulously avoided. We should never feel pressured to progress through the grieving stages in a set amount of time based upon another’s opinion of what is or is not satisfactory. Instead, we need to hear words of hope—even with a terminal diagnosis—that it is possible to live to our last day with purpose and significance. Such hopefulness is the very thing that will sustain us through prolonged suffering.

The ultimate goal in the grieving process is to move into a place of peaceful acceptance of our terminal condition. This requires energy and labor. By letting go and allowing a shift to take place in our hearts and minds, we will be able redirect our energies from the struggle to survive to our struggle to end well.


Stage One: Denial and Isolation

When we first receive the news that without a miracle we will die, it is quite common to respond with “That’s impossible. You can’t be talking about ME! It cannot be true.” Kubler-Ross terms this universal reaction to devastating news the Denial and Isolation phase. Almost all patients from time to time use denial as a coping mechanism. Just as we do not have the ability to gaze at the sun for long periods without damaging our eyes, we also cannot spend every moment of every day facing death. Denial acts as a shock absorber and provides space for us to gather ourselves so that, in time, we are able to respond appropriately. We all occasionally need a break where we are able to contemplate more cheerful things, to daydream about happier places and unlikely aspirations. It just helps.

While in denial, some of us may put on a happy face to disguise our growing depression. We may briefly talk about our situation, but then abruptly change the subject. Every terminal patient at times needs denial to cope, particularly at the beginning when numbness sets in. Ultimately, though, this numbness will fade and we will begin to recuperate from the shock in order to move towards embracing our diagnosis. It helps to face our fear of death “when it is still miles away” rather than “when it is right in front of the door.”

Stage Two: Anger

Denial for the majority of people will eventually turn into anger. After questioning how this terminal illness is possible, the most natural question to ask next is “Why me?” followed by, “Why couldn’t it have been someone else?”

Anger is usually quite difficult for family members, close friends and health care providers to understand. Such individuals are frequently on the receiving end of our bursts of anger. When released, we direct our anger at the ones closest to us. It sprays out unexpectedly, like a machine gun firing in all directions without a specific target. “This doctor is no good! The treatment isn’t doing what it’s supposed to do! The nurses are lazy! Can’t they see I’m in pain here?” Every little thing makes us want to explode internally and externally for no apparent reason. Everywhere we look, we find aggravations and something to complain about.

No one is perfect. That being said, what we as terminally ill patients need most from our loved ones and caregivers when passing through our struggles with anger, is for them to remember that what we are really angry about is our sickness, not them. We need multitudes of grace because what we’re experiencing is the most difficult battle of our lives. Considerate loved ones will try to put themselves in our shoes for a time, and then perhaps understand the source of our anger. They’d be angry, too, if their plans were permanently interrupted; or, if all of their dreams for the future would never be possible. They’d also be angry if the rest of the world just seemed to carry on without them as if they had already died…but they hadn’t.

We know our anger is often irrational but by allowing us to express it, we will eventually calm down. When we receive kindness, respect and attention we feel understood and significant—still human beings who just happen to be living inside a body with a terminal sickness. Anger is a natural part of our journey.

Stage Three: Bargaining

Anger eventually will give way to a third coping mechanism called bargaining. This stage is helpful because it allows us to temporarily evade reality…but only for short periods of time. Otherwise, if prolonged, bargaining can become unhealthy to our souls. This phase comes after we have told ourselves that it is impossible for us to be terminal and after our bouts with anger…when reality has settled in. In this phase, we are very much like a child bargaining with his parents who have denied a wish. After a couple failed attempts to persuade them to change their minds, a child may rethink his strategy and try another way, such as make promises to change or to do more.

As a patient who uses bargaining, we may say something like, “If God has decided to take me from this earth and he did not respond to my angry pleas, he may be more favorable if I ask nicely.” The rationale becomes a hope that if we enter into some sort of private agreement with God that he will perhaps postpone the inevitable. Bargaining is a tactic we know is farfetched but we do it anyway, hoping to be rewarded for good behavior, granted an extension of life or a few days without pain.

From a spiritual standpoint, bargaining may be a red flag needed to draw attention to unresolved guilt in our lives. Because we view dying through the lenses of a Biblical worldview, sin, we believe, is the root cause of our death. In order to live again, we must confront it through the cross and repentance. Whether we recognize it as such, bargaining conversations with God may actually be pleas for forgiveness, in which case, a prayer like the following just may be of help:

"Jesus, something in me is nudging me to say YES to you. I want to do that. The Bible says that if I declare you as the one in charge of my life—as Lord of my life—then help from heaven will come—that I will be “saved.” I’m so open to that. Jesus, be my Lord—right here, right now, over my current set of circumstances—be my Lord. Forgive me of my sin. Cleanse me from the pursuits that I know are wrong. I surrender to you and welcome you into my life. I am yours!"

By properly addressing matters of the heart where guilt frequently buries itself, many people have been able to pass through quickly or avoid altogether the next phase, which is depression.

Stage Four: Depression

Once we have waited unsuccessfully for an answer to our bargaining pleas, when we have undergone an additional surgery or hospital stay, or when our symptoms intensify and we grow weaker, smiling is more difficult. Denial, anger and bargaining are replaced by “a sense of great loss.”

Depression, according to Elizabeth Kubler-Ross, comes in two packages: reactive depression and preparatory depression. Reactive depression is an immediate response to a past loss. A woman lost her breasts to cancer and wonders if she is as much a woman as prior to surgery. A man lost his leg in a hit-and-run accident and wonders how he will ever function normally again. A woman caring for her ailing husband reenters the workforce and grieves that her children will no longer have her best hours of attention each day. These are all examples of reactive depression—a response to a loss from a past event. The source of reactive depression is usually obvious to a considerate health care provider, friend or family member who takes time to listen. Such a person can help alleviate guilt or wrong thinking that often accompanies depression, by speaking words of objective truth or by doing small practical things to remove one’s need to worry. Elizabeth Kubler-Ross says this about how to respond reactive depression:

Our initial reaction to sad people is usually to try to cheer them up, to tell them not to look at things so grimly or so hopelessly. We encourage them to look at the bright side of life, at all the colorful, positive things around them. This is often an expression of our own needs, our own inability to tolerate a long face over an extended period of time. This can be a useful approach when dealing with the first type of depression in terminally ill patients. It will help such a mother to know that the children play quite happily in the neighbor’s garden since they stay there while their father is at work. It may help a mother to know that they continue to laugh and joke, go to parties, and bring good report cards home form school—all expressions that they function in spite of mother’s absence.

Preparatory depression is different than reactive depression. It “is one which does not occur as a result of a past loss but is taking into account impending losses.” With this kind of depression, the emotions experienced are actually tools that we use to help move us into acceptance. This kind of depression is necessary and has the capacity to spare everyone greeting an impending loss, a tremendous amount of needless suffering.

When in a state of preparatory depression, it is better that our loved ones and health care providers refrain from trying to get us to look for the silver lining in our clouds. This kind of diversion takes us away from contemplating our coming death, which we need to do. Just as it would be considered inappropriate to urge a grieving son or daughter to see the positive in his or her parent’s passing, it is equally inconsiderate to urge a terminally ill patient to focus on the bright side of things. We need this phase of depression to help carry us through the full grieving cycle and on to a place of acceptance.

Preparatory depression is a time when we are grieving the loss of everyone and everything we cherish. By allowing us to express our sadness in the manner in which we choose, the burden becomes lighter for us. We are grateful to those who will be with us, listen to our words or allow us to sit quietly for extended periods of time. When silent, we are processing our experiences internally, so please refrain from trying to cheer us up. Hold our hands, stroke our hair, pray for us and remember we are thinking primarily of the things to come, not necessarily the past. When you respect our wishes, you are helping to prepare us emotionally to die…and this graciousness is a priceless gift.

Stage Five: Acceptance

With support, we will eventually enter into a frame of mind that is neither angry nor depressed about our soon-coming end. Rather, we will have come to terms with the inevitable, and upon expressing our feelings and mourning the loss of everything meaningful in this life our contemplation will give way to what Kubler-Ross describes as “quiet expectation” or acceptance. Achieving this phase of grief is colossal.

Acceptance ought not be mistaken for happiness. If anything, it is a phase devoid of feeling for us. We have labored through the dying process and through the very painful stages of grief, and are now at a point where we’re ready to let go forever. As one patient shared, this is a time of “final rest before the long journey.” Things of this world matter very little now that we have released it all.

More importantly, at this point, focus ought to be redirected to our family members who are now in a position where they need support saying their goodbyes and contemplating life without us. It is very difficult for them to understand how our ease of dying is directly connected to our ability to disengage from significant bonds with those we care about most. This is why acceptance is so difficult for those left behind.

It is often a challenge for our health care providers and loved ones to know when to push us to keep fighting, and when to let us go. Dying wasn’t a part of the original plan, so we naturally resist it. We especially resist when we don’t want to say goodbye or admit defeat. There are those who fight for life until their last breaths. There are others who resign themselves to defeat even before a terminal diagnosis is given. Regardless, the day will eventually visit every one of us…for some, sooner than later. So, when the time does arrive for us to die, if we persist in the denial or anger phases, it will be only that more difficult to die peacefully. Acceptance is a gift from God that brings us back to the place where we first began...resting peacefully and comfortably in his hands.

Others on the Subject

The field of thanatology has developed significantly in recent years, beginning with Elizabeth Kubler-Ross—who provided a strong foundation upon which many others have built—and added to by individuals such as Bowlby and Parkes, Worden, and Wolfelt...to name a few.

In the 1980’s British psychiatrists John Bowlby, MD, and Colin Murray, MD reworked Kubler-Ross’ five stage grieving paradigm into a four stage cyclical grieving process. Those of us suffering a significant loss may successfully cycle through the stages, but then when a memory surfaces or we experience a trigger—a holiday, birthday, anniversary—we reenter the cycle once more. This can occur many times and unexpectedly.

Bowlby and Murray’s Four Phases include:

1. Initial phase: Shock and Disbelief
2. Second phase: Searching and Yearning
3. Third phase: Disorganization and Despair
4. Fourth phase: Rebuilding and Healing

Harvard Medical School psychotherapist and researcher, J. William Worden, PhD, who specializes in terminal illness, suicide and child bereavement, has created a list of four basic tasks for adapting to loss.

These tasks are:
1. Accepting reality of the loss
2. Experiencing the pain of grief
3. Adjusting to an environment in which the deceased is missing
4. Withdrawing emotional energy and investing it into another relationship.

According to Worden, walking through these four basic tasks is what will restore “equilibrium” and complete the cycle of bereavement. It is not necessary that these tasks occur in the order presented. Rather “they can be concurrent, cyclical, or overlapping, and we—the grieving ones—will work on them with much effort until regaining balance.”

Dr. Alan Wolfelt is the founder and director of the Center for Loss and Life Transition (Fr. Collins, CO) and is a well-known grief care provider and educator. He offers a postmodern take on grief: each individual grieves in a manner that is unique to him, and there is therefore little predictability or phases that fairly articulate a universal grieving experience. The griever, as was the case for Kubler-Ross and her team, is the teacher and the support-giver is the learner.

Final Thoughts on Grief

When it comes to grief and it’s affects on human beings, it truly is impossible to institutionalize, categorize and apply common thoughts to every person experiencing a tragic personal loss. There is just no “one shoe fits all” for this deal called grief. As different as each of us is, the ways in which we express our pain and move toward relief, vary even that much more.

For some strange reason, though, we often expect ourselves to grieve as the textbook explains or as a role model, like a parent, instructed us. If we each give a unique expression of our innate talents through work choices—and other examples are in abundance—then, at the very least, we can strongly expect to grieve distinctively.
It does help to hear from grief professionals that there are widespread experiences with sorrow that create common bonds and tie us together. What is still necessary though, according to Darcie D. Sims, co-founder and president of Grief Inc., is to “create a new language for grief…a language that speaks honestly of grief’s pain and crushing despair. We need a language that speaks of the painful promise and of the hope that is cast by the memory of love given and received. We need to create a language of HOPE…” Most importantly, we must learn to be patient with our selves and with each other. Grief is a life-long journey. We may never fully “get over” our losses, but we can rest assuredly that we will be comforted through them. There is an outstanding promise from God that one day our grief will be replaced with never-ending joy. We all have something wonderful to anticipate, and this is the true source of our hope.