Hospice Patients Alliance: Consumer Advocacy

Swallowing The Bitter Pill




by Ron Panzer
President, Hospice Patients Alliance
May 15, 2005


Those who work with the dying witness the waves of challenging losses that arise as death approaches. We see pain on the physical, emotional and psychological level and the anguish of those who are about to lose the one they love. Patients sometimes share their fears and spiritual struggles as they contemplate losing everything they know and face their impending death. There are all sorts of interactions between family members, friends and other visitors. But, contrary to what one might imagine, the dying process is not always experienced as the dark and depressing time many imagine.

For many, dying and death are accepted as a natural culmination of a long and complete life. Death is seen not as a defeat, not as an obliteration of one's being, but as a transition to something even greater. For those who are ready, though some may find this difficult to believe, death is actually welcomed.

Those who work with patients at the end of life know it is a special time of sharing that is filled with an intimate, intense immediacy that is unlike any other care setting. Although there are common issues that must be dealt with, each person and their family are unique in how they tackle these issues and complete the "unfinished" business of their lives. They will face dying as they have approached life.


The dying process is not separate from life,
but is a continuation of all that has come before;
it is the last part of living out our lives.

Some would choose to hide death and dying away behind the cold, hard walls of a hospital corridor where "others" can provide care. They want to hide from their own fears and the painful experiences they might encounter were they to be present during the dying process. Sometimes this fear of death (on the part of those not dying) causes isolation for the terminally ill patient who just wishes to continue as normal a life as is possible under the circumstances.

While others may wish to hide death away from sight, we have learned that the dying themselves mostly want to die at home surrounded by those they love. Good end-of-life care helps to make that possible. Patients say, "whatever you do, don't put me in a facility." Hospice staff can help support the family and patient through this incredibly trying yet often strangely rewarding process at home.

Those who have no experience with the end of life care setting do not understand how caring for the dying might be "rewarding" or "fulfilling." They fear death and feel revulsion for the dying process. However, the period of approaching death is not only a time for loss, but also a time for sharing, communicating, serving and experiencing. It is a time of great need, ... a time when experienced and knowledgeable staff can make a tremendous difference.

It is a time when caregivers do their best to assess and relieve the various forms of suffering that may arise. The memories of that special time remain forever with those who survive, and how staff intervene to relieve suffering can make the difference between a family having very positive memories or experiencing bitterness about how the dying process and symptoms at the end of life were handled. Because of the intensity of the experience, the dying process and death are not something that can be forgotten easily, just as a birth is forever imprinted upon one's memory.

Whether at the end of life or not, I have yet to meet a person who has not encountered and suffered some deep pain. We all have losses and experience pain: physical suffering, emotional disappointments, and problems with relationships, finances or other losses. That pain can sometimes feel overwhelming. Though everyone is touched by pain in some way, representatives of popular culture seek to convince us otherwise; they suggest that we can be forever "young," "healthy," "beautiful," "carefree," "happy," or "successful," if we only would follow their advice or purchase this or that product being marketed at the time.

We want to believe them! We want to believe that we can actually be free of the pains of this life, that we can be forever "young," "healthy," "beautiful," "happy," or "successful." The problem is: ... we know better!

Unless we were teenagers filled with the naiveté of youth, we cannot fail to see the "sands of time" move inexorably through the hour glass, demanding that we take note of increasingly prominent signs of aging: gray hair, changing shapes, wrinkles, weakness, pain or disease. If we allow ourselves to be objective, we are forced to admit that many around us are stricken with accidental injuries, sickness or death each year. We ourselves will inevitably suffer and succumb to old age and death.

The Psalmist expressed it so well:

"I am in distress; my eyes grow weak with sorrow, my soul and my body with grief. My life is consumed by anguish and my years by groaning; my strength fails because of my affliction, and my bones grow weak." Psalms 31:9-10

He confirms what we witness in the ever-full hospitals and nursing homes. He confirms what we learn from the obituaries and cemeteries. No expert witness could ever refute what he tells us about life! The people we see in the hospitals and nursing homes (or in the cemeteries) compel us to realize how temporary our lives actually are. We are forced to realize that no matter how much we accumulate, no matter how much power or wealth we acquire, we cannot take any of it with us when we die.

There are wonderful times, but we also witness the illnesses, disabilities, crimes, disputes, legal wrangling, plotting, conspiring, divorces and estrangements, the battles and wars, and the injustices heaped upon the weak by the strong.

We witness the powerful who end up weak (or dead), the young who become old, the arrogant who are humbled, the rich who lose all they "possessed" upon death ... and we wonder how it can possibly make any sense at all.

We may wonder if the Creator was a "madman" to have created this world. We may blame Him for the suffering and losses that plague us, or for even allowing death at all. Although we want to blame someone, blaming God or others for the suffering in this world only increases our own isolation and pain.

Although we may be tempted to bitterly label the Creator that "madman" for allowing mankind's inhumanity to man, it is mankind's own madness that gives rise to the evils of this world, not the Creator's. It is our own blindness and disregard for God's laws that give rise to manmade calamities.

If we deny God's existence and reject any spiritual foundation for life, we will view life merely as a material accident of chance; taken at face value then, life would not appear to have any lasting meaning or importance. Yet, to take just one example, scientists have learned that the complete complex genetic code for a human being would fill hundreds of books.

I cannot bring myself to make the leap of faith required to believe that all of that complex DNA code arranged itself by accident, even were a billion years allowed for it to happen!

To believe in the completely accidental nature of life, as we know it, would require the denial of everything I see around me. All of science serves to confirm the wondrous complexity of this life and to confirm the miraculous in life. Rather than being a material accident without meaning, we can view life as a gift. We can view life as a spiritual journey with lessons to learn through every challenge. All of life including the dying process becomes meaningful.

It is a lack of appreciation for the miracle of life that leads us to find fault with death itself or the suffering that is part and parcel of this world. It is very common to feel tempted to blame God for the losses that occur in our lives. And the advice of one of (the Biblical patriarch) Job's self-appointed counselors was to do exactly that, to "curse [blame] God and die." - Job 2:9 The appeal of a chosen death is nothing new! "Choosing" death was exactly the advice of one of Job's misguided counselors!

Yet, even if we reject suicide (by whatever means) we may wonder how God, if He truly is a "just" God, could allow suffering and death, especially suffering and death that touches ourselves, or those we care about.

Dwelling on our bitterness only expands it till we are consumed with rage at the injustices (whether real or imagined) that we see dealt out in this life. We may not understand why "one man dies in full vigor, completely secure and at ease, his body well nourished, his bones rich with marrow [while] another man dies in bitterness of soul, never having enjoyed anything good." Job 21: 23-25

We naturally question these and other apparent injustices. We naturally question the suffering we encounter, and some of us become bitter, blaming others. However, we cannot be fulfilled if we cling to that bitterness. We must go through it, beyond it, even though we feel that much of whom we have been may be left behind if we let go of our bitterness.

When Job's family died and he lost all his possessions, Job grieved but did not become bitter; he didn't blame others or God. Some would argue that a person who would not blame others or God angrily for such terrible misfortune could not and did not really love his family. Yet Job was a man of great faith who did love his family. It was his greater love for God that enabled him to absorb the terrible losses in his life and allow him to remain filled with faith.

When Job heard that he had lost everything and everyone dear to him,

"Job got up and tore his robe and shaved his head." [He was upset!]

"He [then] fell to the ground in worship and said: "Naked I came from my mother's womb, and naked I will depart. The Lord gave and the Lord has taken away; may the name of the Lord be praised." In all this, Job did not sin by charging [blaming] God with wrongdoing." Job 1:20-22

The Book of Job contains one of the most difficult lessons: to accept whatever comes with unshakeable faith. No matter what suffering, pain or loss is sent our way ... we are to remain faithful, loving and devoted.

Who can easily do this?

While we (and others) may accomplish much in this life, we are to accept those things we cannot change. For who are we to understand "why" the universe is the way it is. We can study endlessly "how" objects in this physical universe interact. We can study the structure and function of various living organisms. But ultimately, though this is offensive to our sense of pride in all humanity has accomplished, we can never know exactly "why" the universe is the way it is.

In one of the most famous verses from the book of Job, God asks Job, and ultimately each one of us who regularly question "why?"

"Who is this that darkens my counsel with words without knowledge? Brace yourself like a man; I will question you, and you shall answer me. "Where were you when I laid the earth's foundation? Tell me, if you understand." - Job 38:2-4

And we can only answer that we certainly weren't there at the foundation of the earth or the universe, and we do not understand. No matter how "learned" we become, we do not understand at all.

Yet we still question and challenge God regularly asking, "why?" "Why do our loved ones have to die?" If we question why God allows suffering in the world, we should be willing and able to "correct" and improve upon what God has done in this world. Could we really do a better job? Could you, if you were given the chance to do so?

Job, like many of us, found that people around him were eager to offer another message on how to deal with the troubles encountered in this life. Job's "friends" offered much advice that was not helpful at all. Like modern day assisted suicide proponents, some told Job to commit suicide! ... to "curse God and die." They said that Job's (man's) suffering was so terrible that death would be preferable to living with such grief. So, the argument of the euthanasia or assisted suicide advocates for a hastened death, at a "time of one's own choosing" is surely nothing new.

And what if Job had accepted the advice of the suicide proponents and "cursed God" and died? He never would have experienced God's blessings, because the greatness of the Book of Job is found not just in Job's tremendous demonstration of faith, but in God's grace and blessings given to Job:

The Lord blessed the latter part of Job's life more than the first. - Job 42:12
If Job had listened to the suicide proponents of his time, there never would have been a "latter part" of his life to be blessed!

Some of Job's other "counselors," like many today, may say that the suffering we encounter is our fault, that we are being punished, or that our faith is inadequate. But that is not the message of the book of Job. The message is clear that we may be tested as we move through this life. The message is clear that our faith may need to be strengthened. But while we are responsible for the consequences of our actions, we are not to blame for all of the suffering in our lives. Suffering is simply an unavoidable part of this life.

People often advise the grieving that they can and should "forget" whatever has caused them pain, even to "forget" the death of their loved one. "Just let it go," they say, but there is no need to force ourselves to forget. In fact, "forgetting" someone we have loved is not really possible.

We cannot and should not forget them, but we can and must continue to move on with life and do whatever we can to make this world a better place. In time, we will relinquish our preoccupation with our grief and with the past. We will not and will never forget. We will never lose the connection with those we have loved and then lost through death.

Those with unwavering faith, like Job, may take all challenges in stride. But how many have such unwavering faith?

When we are confronted with deep pain, disease, suffering, even with our own impending death or our loved one's death, it is very difficult to accept and remain at peace. We do not have the strength of faith that would allow us to remain at peace in the face of such deep losses.

People have a way of curling inward upon themselves while creating a self-imposed wall of isolation. Though the wall is self-created, the barrier separating them from others is experienced as very real. The individual now not only suffers due to his losses and pain, but also suffers even more intensely due to his isolation. Pain becomes unbearable when we believe we are isolated, unloved and alone. The dying may be consumed with their own feelings of fear, grief, guilt or anger.

Some of the dying may even shut out their friends and family, refusing to speak or interact at all. Those doctors, nurses and others who care and serve the ill or dying know that one of the greatest achievements they can have in the care setting is to be there and "connect" with the patient, to share in the moment, to let them know they are not unloved and unrecognized, to let them know that they are positively loved and appreciated, to "reach" past the wall and touch their soul, so that a mutual recognition is felt, heart to heart.

We are all alone in a way, but it is the loss of feeling "connected" to others or God that hurts so much. The betrayals, pains and disappointments in life make it even more difficult to trust others or to trust the process of life itself. The loneliness and depression that may arise can eventually lead us to shut ourselves off even more completely. One of the paradoxes of life is that in order to free ourselves from that loneliness and self-imposed isolation, we must be again willing to trust and reach out to others and God.

We all have a need to feel loved, and so do the dying. Those who care for others have the privilege of serving and sharing their love. Although many fear being around the dying, the dying often need those they care about to visit and be there with them. They do not need casual visits from those who are not involved.

And those who are involved, the family and friends, may also feel afraid or experience grief, guilt and anger. Sometimes the family and friends cut off the relationship with the dying making them even more isolated and alone!

While those witnessing the dying process wonder what to say or do, there are no special words or phrases that are going to magically "make it all better." Dying and death are not something that can be "fixed." It is something that must be acknowledged and accepted.

The prospect of dying brings most to their knees, shakes them to their core and forces them to contemplate the meaning of their life, to review their actions in life, to confront their ultimate aloneness. Many are afraid and overcome with loneliness in their despair, but many others are ready to "take death on" and let go of this life.

Not everyone experiences "aloneness" as "loneliness." Some can spend days, weeks or even months all alone and never feel "lonely." What makes the difference? Those who are not "lonely" are filled with a sense of purpose, a focus, a feeling of "connectedness" that bars any feeling of loneliness from entering into them.

They know they belong. They know they have a place in this world. They know they are loved. They know they have a purpose in this life and love to share. Those who face death with this attitude are at peace when the end comes. And the love they have for others may make itself known in a million ways.

Those who have understood reach out to others, encouraging, comforting, loving, helping, sharing with them, nurturing them till they are strong enough to trust and to stand on their own in their "aloneness" and set out along their own paths. They are no longer afraid. In some cases, the dying comfort those around them! In some cases, friends, family or caregivers comfort the dying.

There is no rigid rule about how the process of dying and death will impact any one patient or their family and friends. Patients who perceive and accept their ultimate "aloneness" may also know their connectedness with others, with all of life and the Creator of all life. They are ready to experience the next step and the world that awaits them beyond. They are not afraid.

They demonstrate that the bitter pill that challenges us in life can be swallowed. Our loving approach to life need not be broken by the losses or hurts we experience.

Though we may not be able to immediately forgive those who deeply disappoint us,
Though we may not be immediately able to accept the horrible injustices we witness,
Though we may not be immediately able to surface from the depths of our rage
when those we love are hurt and swept away,
Though we may not be immediately able to embrace our pain and transcend it,
there is a way to turn the poisonous depths of despair into hope.

We need to focus on doing the little we can do in our own world to help others. We need to open our eyes and hearts to see the need of others. Their needs cry out to our hearts: choosing to care for them has the power to heal us.

For those who are dependent upon others and in need, being willing to accept the help of others is not only humbling, but also healing. In serving as well as in being served, we are all healed in some way!

Strange it is that while we feel so powerless over the hardships of this life, we have only to give of the little we have, to find that we have so much more. And the more we give of ourselves, the more we have. The pain that has been tormenting us no longer touches us in the same way. That pain may stubbornly cling to us, but it becomes tolerable.

The awareness of suffering's universality becomes a raft that helps us to make the journey from isolation to connection, from self-centeredness to concern for others, from bitterness to gratefulness, and from doubt to faith. We can then reach out with real compassion, a compassion that connects us with the ones we serve.

If we consider the wonders of the universe and remember and focus on the kindnesses that each of us have surely sometime received, we can awaken within ourselves gratefulness for whatever good fortune we have all had in our lives.

Willingly accepting our reality, including its pain, we can move forward to truly live, not by focusing on ourselves only, but by realizing our purpose and loving that which inspires us. There are endless opportunities to serve, none of them unworthy of pursuing.

For as long as there is life, there is an opportunity to serve and help others in some way or another.

Even the dying can serve, help or bring healing to others around them. This service given to the surviving family and friends by the dying is regularly seen at the end of life. This is one of the reasons that choosing to end the life of even a dying person is wrong.

Assisted suicide and euthanasia eliminate the endless possibilities in those moments, hours and days at the end of life.

Assisted suicide and euthanasia are the equivalent of cursing God for the gift of life He gives.

We all have pain in this life. If we struggle to rid ourselves of the suffering that must in some way accompany this life, we find nothing but continued pain and isolation: a very bitter pill. There is nothing wrong with caregivers using all medical means to relieve physical pain. We must do everything possible to relieve pain. But if we accept the suffering that still comes our way and appreciate the greatness of God's love for us, we are comforted. Our pain becomes bearable.

When we accept and willingly shoulder the burden that is given to us in our lives, we find our burden lightened. We are able to swallow (what we thought was) a bitter pill: the simple reality of this life.







The Hospice Patients Alliance is a 501(c)(3) charitable patient advocacy organization acting to preserve the original hospice mission and to promote quality end-of-life services.




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