Spiritual distress can be a devastating experience. If it occurs during the course of an illness, a time when there is increased likelihood that it can happen, the effects on the patient’s course, outcome, and quality of life can be quite negative and destructive.
Spiritual distress can prevent growth, healing, and recognizing one’s own potential for change and coping at a time when such entities are so helpful. Most would define spiritual distress or spiritual pain as a loss of a sense of wholeness. There is a feeling that things are not right and that life has lost meaning, hope, and purpose. There may also be a loss of identity, since the patient may no longer have his/her usual role or independence. In addition, a sense of disconnectedness may occur where relationships with family, friends, and the world may have lost their usual character. The patient may have a real sense of floating where nothing makes sense and life does not seem worthwhile. Major spiritual questions may be asked, such as “Why did this happen to me?”, “Did God punish me?”, “Does God exist at all?”, “Does my life have any meaning?”, “Does death have any meaning?”, “What could I have done to prevent this?”, “What is my task for the rest of my life?”. Besides the sense of loss of purpose, balance, and even self, there may be great anxiety about the future and also what happens after death. Frequently, spiritual distress evokes the feeling that one’s life is falling apart.
How the problem of spiritual distress is confronted and how the patient is helped to find new meaning and value in living as well as new purpose and connection is as important as the medical regimen for the patient’s illness. So often in modern medicine, all the attention is focused on the physical pain and symptoms and the medications and procedures used to relieve them, while the real pain that spiritual distress can cause is neglected and not addressed. And yet even if there are not always answers to some of the poignant spiritual questions, it is important to realize that not everything can be or needs to be fixed. Just giving patients a chance to voice their concerns and be heard is very therapeutic. Just recognizing the pain and uncertainty of spiritual distress can empower patients to go inside and reevaluate their lives and values and come up with new ways of coping and growing. So, even though spiritual distress is very uncomfortable and potentially dangerous to the patient’s health, whether or not a physical disease is already present, it is also an opportunity to grow, evolve, and transcend one’s limitations to a new sense of self and one’s relationship to the world. In the process of exploring what are the causes of the spiritual pain, it is possible for the patient to develop insight, creativity, a sense of hope, and a plan of action.
One of the most powerful ways to help a patient in spiritual distress is to let the patient tell his/her story. Dr. Rachel Naomi Remen frequently refers to the “power of story” and comments on how sitting in silence allowing the patient to convey his/her story is one of the most therapeutic gifts a healthcare professional can give to a patient. Why can storytelling be helpful when there is spiritual distress? In the book, What Do I Say, Elizabeth Johnston Taylor comments that “Telling their stories helps patients transmit their legacies, providing a sense of purpose; helps them discover and better understand who they are; helps them build a warm connection to the listener; and helps them value the lives they have lived.” Stories can reveal life themes, hidden strengths, unresolved conflicts, and how patients view themselves. Telling stories may also help the patients to express feelings, which might otherwise be a difficult process for them. The stories open the door to who the patient really is and what is important in his/her life. It is a start to understanding why a patient may or may not be in spiritual distress and what may be done to restore meaning to his/her life.
What are the specific elements of spiritual distress or pain, and how may each be addressed? In their book, Healthcare and Spirituality, Stephen P. Kliewer, D.Min. and John W. Saultz, M.D. delineate the different emotional and spiritual states a patient with an illness, or anyone having a spiritual crisis, can experience and how to deal with them. The list includes helplessness and hopelessness, anger, guilt, fear and anxiety, a sense of meaninglessness, and disconnectedness. Not dealing with any of these elements of spiritual distress, should they be present, can have a negative impact on one’s physical and mental health, but also on one’s recovery from an already established physical disease.
With helplessness, there is a feeling that no help is available either from within one’s own self or own resources or from other people or from anywhere in the outside world. The patient has a sense that nothing can be done and all control is lost. People who believe in God may even feel that God has abandoned them. To counter this sense of helplessness, it is important to encourage the empowerment of the patient. Patients can be helped to find hidden resources and strengths within themselves to deal with their disease and make a difference in their lives, even if they won’t survive the disease. It is important to stress that solutions can be found, because patients who feel helpless do not participate in their medical care and as a result, their potential healing. As a result of empowerment, patients may prolong their life or at least improve the quality of their remaining time.
People who have a feeling of hopelessness have no belief or trust in the future, cannot see possibilities, and consequently experience despair. They lose their connection with other people and with a higher power, if they believe in one. They have no sense that anything can ever change or is worth struggling for. They have no belief that something better lies ahead or that a belief in something sacred can be helpful. If a patient loses hope, his/her chance of recovery or even survival markedly decreases. It is a major responsibility of a physician or other healthcare professional to inspire hope in a patient, especially when they have a treatable or curable disease. But even in the case of a terminal situation, hope can still be encouraged by a new treatment, assurance that palliative care will make the patient comfortable, emphasis on the patient’s connection to an outside power, if the patient believes in one, pointing out what the patient can still accomplish to make life meaningful and fulfilling in the time remaining, ot making sure the patient is aware of the legacy he/she is leaving behind to others.
Anger can occur as a part of spiritual distress. It may be expressed as resentment. frustration, annoyance, or exasperation. The anger can be against the disease, family, friends, people in general, the world, or God. It can also be turned inward against oneself. Anger can be very destructive and sap one of energy. It can dissociate the patient from other people and from one’s valued and reassuring sacred beliefs. It can damage one’s physical health and prevent one form healing. It can block insight that fosters a healing process and keep the patient from developing a spiritual side. Forgiveness is the best means to deal with anger. While it may be difficult to give up resentment and negative judgment toward the person or people who are the cause of the anger, to do so is so freeing and allows one to move on and deal with other issues that can lead to growth and change. It can also result in more open and embracing relationships with others, thereby bringing more meaning and enrichment into the patient’s life. The same principles of forgiveness apply to one’s self. Forgiving oneself for perceived shortcomings or previous actions leads to being more content with who you are. Anger against the world in general and God in particular can be eased by allowing the patient to vent and also by encouraging the patient to accept “what is” with more equanimity so that he/she can move on.
Guilt can be a very destructive force and a huge part of spiritual distress and pain. In fact, it can even be encouraged by organized religion’s beliefs and practices. Guilt results from a feeling of not living up to one’s own expectations, or society’s expectations, or what the patient may perceive as God’s expectations. In some cases, guilt can lead to reevaluation of one’s values and actions and result in positive correction and change. But if guilt is unreasonable and nothing but punishment-oriented, it can lead to shame, a sense of worthlessness, and inactivity. Guilt can cause emotional pain and a sense of being lost. In an extreme form, guilt can make a patient see an illness as a punishment. Thus, it is important to recognize guilt as an underlying cause of spiritual distress. If the guilt is appropriate, then the patient should be encouraged to resolve the issues, make amends, and accept the responsibility for the harm and hurt that was done. This can lead to reconciliation with family and/or friends. And guilt resolution can result in a more healthy relationship with God or whatever higher power the patient may believe in. If the guilt is excessive and inappropriate, the root of the guilt must be examined and more appropriate ways of thinking and feeling encouraged and supported.
Fear, anxiety, and a sense of meaninglessness can all be an expression of spiritual distress. There may be fear of the unknown, fear of what lies ahead, fear of death, fear of loss of self. There may be generalized anxiety associated with the sense of one’s life falling apart or the lack of any direction in one’s life. It is easy to take the next step of regarding life as meaningless. Questions such as “Why live if you have to die?”, “Why do I have to suffer?”, “Why are we even here?”, “Does God really care?”, “Does anyone make a difference in the long run?” come up. What Drs. Kliewer and Saultz suggest in their book is to encourage peace and serenity in the face of fear and that nagging sense of meaninglessness. This involves accepting situations, but still finding peace and contentment within oneself. It also means recognizing that the universe usually does respond to needs. It also requires working at finding great joy in the present moment, forgetting the past, and not thinking about the future.
Meditation is a great practice to help achieve this viewpoint. One can also tap into the beauty of the natural world and feel a part of the universe with a real sense of belonging. Cultivating a sense of the Divine or sacred is also very helpful, but takes work and a willingness to be open to life’s experiences. Those who had a strong and sustaining faith in God, but are now doubtful of God’s existence, may be encouraged to look for signs and indications that their God still operates in the world and in their lives, despite the fact that they now may have an illness. It is most important for patients not to allow the disease to define who they are, but rather to enjoy who they are and realize their value to others and the world. While it is not easy to do, if one can realize that life is still a blessing, even if one is very ill, disabled or dying, the rewards, in terms of richness and comfort one may then experience, are astounding.
Finally, disconnectedness can be a significant and painful part of spiritual distress. The patient may feel disconnected from family, friends, him/herself, the world, and the sacred part of life. There may be a sense of unworthiness, because of the feelings and thoughts associated with being disconnected, and the patient may not want to connect emotionally with anyone. Patients may find it difficult to cooperate with or even listen to healthcare professionals. It may lead to an uncomfortbale sense of isolation. The job of the healthcare team is to encourage the patient with spiritual pain to connect with the professional staff, other people in the patient’s life, the outside world, and the sacred that may have been present or may be newly present to the patient. The physician, nurse, therapist, social worker, or pastoral care professional can foster that connection by being present for, interested in, and supportive of the patient. Even if one does not have a disease, feeling connected, valued, accepted, and loved is therapeutic in itself. As Drs. Kliewer and Saultz point out, a patient who feels connected is more likely to trust the professional staff and, as a result, have more hope and a sense that help is available. Awareness of connection to others, the universe, and the sacred can dispel the loneliness and isolation of illness and allow one to learn from others, from experiences, and from one’s own insight.
Spiritual distress is a real entity that can occur whether a patient has an illness or not. It is a painful, negative, and a potentially destructive state of being, but it also provides a bountiful opportunity for reevaluation, growth, emotional evolution, creativity, and more fulfillment from life. If a patient is struggling with spiritual issues and meaning, it is most important that the healthcare professionals working with the patient be aware of this struggle and help the patient move on toward resolution. If the issues are complicated and complex, psychotherapy or spiritual counseling or pastoral intervention may be necessary and should be provided, but often a good relationship with a physician, nurse, or social worker may be enough to help the patient find inner resources to grow, change, and deal with the demands any illness makes.