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Process of terminal illness | Hope | Problems | Grief | Loneliness | Anger | Anxiety | Spiritual distress | Positives (last update 12/2004)


While there is no universal pattern of stages or responses that every person goes through in the process of dying, there are many commonalities. Not all of these occur in every person, nor do they occur in any particular order. These are simply some of the ways many people go through or respond to terminal illness.

The Process of Terminal Illness

Most people do not just suddenly become terminally ill. Instead, there is usually some variation of a series of events or an up and down process that includes many physical changes, spiritual crises, and virtually all human emotion.

While some people learn that they have a serious illness in the course of a routine exam, more often the process begins with an ominous or persistent symptom such as unexplained pain, fatigue, cough, lump, bleeding, and so on. Some try to deny the potential seriousness of the symptom and hope it will go away, while others seek help immediately. In either case, diagnosis nearly always includes extensive testing and consultations, sometimes surgery, and waiting with fear and hope.

The most common initial response to a diagnosis of life-threatening illness is shock and disbelief. The emotional response is usually complicated by (1) explanations of the illness given in medical terms that many patients do not understand and (2) an immediate discussion of treatment options that, again, many patients do not fully understand.

For some, the shock and disbelief never go completely away. After the initial shock, there usually is a period of turmoil, which includes sleeplessness, difficulty concentrating, and a mix of anxiety and depression. This acute distress usually diminishes in one to two weeks as treatment of the disease becomes the major issue.

There is some treatment, curative, arresting, or palliative (palliative means treatment intended to relieve symptoms - note that similar treatments may be curative in some cases and palliative in others). Many treatments for life-threatening illness include serious side-effects that can be troublesome in ways other than strictly physical. When surgery is part of the treatment, most patients are told, "We'll control your pain after the surgery." But the reality is that pain after surgery is often poorly managed in one or all of several ways:

The end result is that many people come to believe that pain is inevitable. What so many people, including significant numbers of doctors and nurses, do not understand is that pain and other symptoms are nearly always manageable. Pain and other symptoms and related concerns, e.g., addiction, are discussed in other sections of this site, e.g. pain, neurological problems, respiratory problems, etc.

While there are exceptions, surgeons, surgical nurses, and surgical units are notorious for poor pain management. There are many otherwise excellent surgeons and surgical nurses who have little skill or interest in pain and other symptom management.

Chemotherapy and/or radiation may be used early and/or late in the course of the illness. Serious side-effects are possible with either. For some people, the treatment, coupled with the disease, is the sickest they have ever been. It is frightening to think about what may come later.

Treatment usually produces disease remission and decreased problems. There may be a period of time when there are no problems and the magic words, "We can't find any sign of the cancer," are true. But this book is about terminal illness, and the person who is ill learns why the doctor did not say, "There is no more cancer" or "you are cured."

Relapse brings a process similar to that described above. There is shock and disbelief, turmoil, and in most cases leveling off as a new round of treatment ensues or the person adapts to the new life of one who is or might be terminally ill.

And what about the family? Except for the physical problems of illness and treatment, the family goes through a process very similar to the person who is sick. The family's shock, disbelief, fear, anxiety, depression, difficulty concentrating and sleeping may be very similar to what the patient experiences. In some families it is the patient who seems the strongest or most supportive; in others it is a family member; in others it is both; and in still others, nobody seems supportive. In nearly all families it seems at times, the patient and loved ones go through the process at different speeds and thus there are times in every situation when it is difficult for family and patient to support one another. This is the way it is. We are, after all, still human and we still fail.

Once when she was feeling lonely and bad, kind of moping around, I got irritated and said, "Well just quit suffering so much." It was not very helpful, except that I was able to see myself as where I was - tired and irritable. And maybe she saw herself as spending a lot of time suffering.

Eventually, the disease advances and treatment options decrease until there is longer reasonable hope for curing the illness. Yet hope remains.

Hope at a Time Like This

What could a person who is dying possibly hope for? First, no matter how accepting of the illness and situation, most people hope that a cure will be found. The hope for cure does not have to be reasonable or rational. This hope or wish is a way to deal with what for many is life's greatest crisis. And who knows, there really may be some chance that a cure will be found.

But there are other hopes, about which something can be done. There is the hope for pain and other symptoms to be well-managed. Symptom management is a big part of what this book is about: Pain is not inevitable. There is hope to maintain control, if not of the disease, then of other aspects of life. There is hope to find meaning in life as it was and is lived. There is hope (often unexpressed) for reconciliation with God, others, and self. There is hope to die well. There is much to hope for and much work to do.

Problems

For most people, it is not easy to be ill, especially terminally ill. The illness itself brings new and formidable challenges to life. While some old problems or issues that once seemed important fall away, other problems or issues that seemed unimportant or forgotten may reemerge. Among the more common problems at this stage of life are feelings of grief, loneliness, depression, anger, anxiety, and spiritual distress - any or all of which may be unrecognized by providers.

Unquestionably some of the above problems are interrelated and are expressed in a variety of ways. Grief, for example, may be include every one of the problems listed. Feelings of loneliness may be related to feelings of meaninglessness; which may be expressed as anger; and anger may, in turn, lead to depression. There is no simple, universal human response to terminal illness. We are more varied and complicated than that! These problems are broken down here, not to trivialize or over-simplify them, but to help in the process of understanding something that humans have struggled to understand since before time began.

Loss of at least some control and independence is inevitable in terminal illness. This is difficult for most people and especially difficult for those who desire control over every aspect of life or who have difficulty trusting others. Helping everyone involved maintain as much control as possible is a constant thread in dealing with most of the problems discussed below.

In all problems, managing symptoms is the first priority. Poorly managed pain, nausea, etc. lead almost inevitably to anxiety, depression, and a host of other troublesome responses. Yet the problem is not the anxiety, etc., but the pain and other physical symptoms. Even when the problem is primary anxiety, the physical problems must be attended to first or at least concurrently.

Grief

The most common problematic response to terminal illness is a mix of anxiety and depression, and the underlying process is grief. Grief is the normal response to loss, and we lose a lot when we die. Among the common losses are physical health, the illusion of security and living indefinitely, loved ones, comfortable roles in life, independence and control, the future, and more. (Note, however, that while physical health is lost, there are other and ultimately more important forms of health, spiritual, for example.) The grief of family members and other survivors is discussed in the section on grief.

Common emotional manifestations of grief include (initially) shock and denial, (then) sadness, anger, guilt, loss of emotional feeling, and feelings of loss of control. Physical responses include shortness of breath, changes in sleep and appetite, gastrointestinal problems, and fatigue. It is also common for people experiencing grief to have difficulty relating to others and feel isolated. Although the words sadness and depression are often used interchangeably, clinically they are not the same. Depression is more severe in symptomatology and intensity than sadness, and unlike sadness, often includes persistent feelings of deep worthlessness. Depression as a distinct problem is discussed later in this chapter.

There are a number of theories of grief and most include some variation on typical stages. In general, the stages include (1) shock and attempts to avoid the pain, (2) a period of disequilibrium in which the above manifestations are prominent; and (3) in most cases, a period of readjustment. Stages are a way of helping us understand complex concepts. Few people go through these or other stages in life 1 - 2 - 3 and then they are finished. Most people bounce around from stage to stage or spend most of the time in a particular stage; and few people manifest stages exactly as they are set out in books or sites such as this one.

Helping in the process of grief includes, first, understanding the nature and manifestations of grief. Grief is normal for everyone involved in a terminal illness. Indeed, a sign that a particular person may have difficulty with grief is for that person to deny all feelings of sadness, anger, etc.

Explicit in the normalcy of grief is the importance of expressing it. It is better to express the sadness, anger, and other emotions of grief than to suppress or deny them. Of course it is also possible to become enmeshed in experiencing and expressing the emotions of grief and never move beyond them. Talking about the losses, hard though it may be, is part of working through the grief. We wish the pain could be avoided, but attempts to avoid it are ultimately more harmful than experiencing the grief. It is unnecessary that family members and others understand exactly what the person who is dying is experiencing; but it is essential that the person who is dying not have to pretend to be happy and thus go through the process emotionally isolated.

The goal of talking about losses and the associated feelings is not that the person who is dying will feel fine about all the losses and never again have to deal with them. Instead, the goal is for the grieving person to express and explore feelings about the losses, resolve that which can be resolved, and not be alone in that which cannot be resolved. Old conflicts and unfinished relationships often emerge in the process of exploring losses. In some cases, what was thought to be history becomes a painful part of the present. Some people "regrieve" old losses. Some relationships or losses can be healed and some cannot. Either way, the critical element is that the person who is grieving not be alone as he or she confronts and works though the pain.

In the process of grieving for the past and future losses, some people find new hope for the future. New, more important meanings in life may replace old ones. Relationships long past may reemerge to live on in the heart. Some discover that beneath the grief is new hope for a richer, fuller life.

Helping in the Process of Grief

  • Understand that grief is an inevitable and normal part of terminal illness.
  • Recognize and express the losses inherent in terminal illness.
  • Explore the losses and their meaning.
  • Work to resolve conflicts and relationships.
  • Accept that some conflicts and relationships cannot be resolved.
  • Explore what is possible for the future.

Loneliness

Terminal illness can be lonely business for everyone concerned. Sometimes the loneliness is physical, i.e., there are few people around the person who is dying. At other times the loneliness is emotional: There are people physically present, but unwilling to hear or help as the person who is dying expresses the sadness, anger, and pain that seem to be part of so many lives. "Don't say that," or "Don't worry," or even, "Don't feel that way," other people say. Fearing loneliness, the person with the illness quits talking or trying to talk about the issues of greater importance and takes up matters of lesser importance. In this way people come to fixate on their bowels rather than questions about how life was lived or what happens after death. Then, in the dark hours of the night, they lie awake, alone, wondering why, asking the silence if life had any meaning, and wondering if there is a God.

One day, about a month before she died, we were at her house talking. She had been sad for most of the week and on that day she was especially unhappy. I asked her several times what was wrong and each time she answered, nothing; but at the same time she was sending unmistakable messages that something was wrong; a typical way of communicating for her. Late in that long afternoon she started crying and told me that she kept seeing herself lying alone and naked at the bottom of deep hole. She said she was skinny and ugly and there were cigarette butts on her and all around her and she was alone. We held hands and I told her that I was committed - along with Leslie and David (my wife and son) - to stay with her and she would never be alone. It seemed to help.

In some way and at some time, everyone is alone in the process of dying. Both the psalmist and Jesus Christ asked, in lonely agony, "My God, my God, why hast thou forsaken me?"

The presence of others is what helps in loneliness and there is more than one kind of presence. Consistent presence, e.g., the same day(s) each week without fail is better than inconsistent. Presence that accepts weakness and shortcomings without judgment is better than that which expects strength and cheerfulness all the time. Presence that listens is better than that which does not listen. Presence that listens with heart and soul is better than that which listens only with mind. That God is present cannot be forced onto anyone; God's presence either is or is not recognized. And, not everyone who is present has to be alive. Remembered love can bring great comfort.

Many people, whether they express it or not, fear being - and especially dying - alone. Probably everyone benefits from hearing and seeing that they will not be left alone in their illness. Of course what others do is far more powerful than what they say, but still, the patient should hear that he or she will not be alone.

Helping in Loneliness

  • Accept that sometimes people will feel lonely no matter who is there; but that at some point they will know who was there during the loneliness.
  • Be consistent.
  • Accept imperfections in self and others.
  • Listen with heart and mind.
  • Remember that there is more than what can be seen with eyes; the presence of God or a loved one who has gone on can help more than you or I.

Depression

Depression is a deep sadness - even despair - that includes some variation on feelings of helplessness and worthlessness, (often) thoughts of suicide, and does not respond to supportive interventions. Sleep changes are common and anxiety is often an associated feature. Overall, about 25% of patients with cancer have major depression.

There are many theories about the causes of depression. While some depressions are reactive processes to external problems such as unrelieved pain, many other depressions are not attributable to external events or issues. Some people suffer from depression and some do not. The most popular theory currently is that depression is caused by biochemical imbalance. Other theories include depression as a response to (especially early childhood) loss, as learned helplessness, and as unexpressed anger turned inward.

In advanced illness, poorly managed physical symptoms increase the risk of depression. A number of common medications can cause or contribute to depression.

Selected Medications That Can Cause or Contribute to Depression

  • methyldopa (Aldomet, Aldoril, etc.)
  • barbiturates (phenobarbital, Nembutal, Seconal, etc.)
  • diazepam (Valium, etc.)
  • propranolol (Inderal, Inderide, etc.)
  • prednisone (Deltasone, etc.)
  • dexamethasone (Decadron, Maxidex, etc.)
  • some chemotherapy drugs

Metabolic disorders are relatively common in cancer and some can result in symptoms of depression. Among these are abnormal potassium, sodium, and calcium levels; and also hyperthyroidism or adrenal insufficiency.

Criteria for Major Depressive Episode (American Psychiatric Association [APA], 2000.

Five(or more) of the following symptoms have been present during the same 2-week period and represent a change from previous functioning; at least one of the symptoms is either (1) depressed mood or (2) loss of interest or pleasure. Note: Do not include symptoms that are clearly due to a general medical condition, or mood incongruent delusions or hallucinations.

Treatment of Depression

Like other emotional or psychological responses to serious illness, depression is treated at least in part by managing physical or other symptoms. As discussed above, medication and pathophysiological etiologies should be ruled out.

Because depression, sadness, and difficulty sleeping are so common, many patients also receive antidepressants, especially tricyclic antidepressants (TCAs), e.g., Elavil. In addition to elevating mood, antidepressants given at bedtime improve sleep. Antidepressants are also very helpful in the treatment of neuropathic pain (burning, sharp, shooting pain). It usually takes at least two weeks for antidepressants to have an effect on depression. Patients who receive antidepressants (along with morphine or other opioid) for pain, however, usually experience the effects of the antidepressant in just a few days. Elavil and other TCAs produce more side effects than other anti-depressants and may be contraindicated in some older patients. The anti-depressants that have fewer side effects (selective serotonin reuptake inhibitors such as Prozac, Zoloft, etc.) are not effective in managing pain. Paxil may be an exception.

Helping a person who is depressed includes a variety of physical and emotional measures. First, the medication has to be given and the patient reminded that two to four weeks may elapse before mood is elevated. Part of depression is being too tired or just not caring to take medications, get dressed or groomed, or even eat. Thus there is a mutually reinforcing process of feeling bad emotionally and looking and feeling worse than necessary. Most people who are depressed and sick need help getting dressed, with grooming, and with preparing and eating food.

Being around a person who is depressed is difficult. It is not so much the sadness, but more the hopelessness and negativity that is difficult and frustrating to those who provide care. At least initially, not much seems to help and there is little positive feedback. Caregivers should thus be aware of their own feelings as they try to help. It may help the caregiver to spend at least a little time away from the patient and to talk with someone else about the frustrations of trying to help. It may also help to know that once the depression lifts, the patient will know who stuck with the job and how difficult it was.

Depression does not respond well to problem-solving or superficial attempts at counseling. Statements such as, "If you would just look at the bright side..." or "Its not really as bad as you think" are not helpful. A person who is depressed is unable to look at the bright side: He would if he could. And at least internally, it is precisely as bad as he thinks. Even so, factual or normative information about depression and terminal illness should be given, e.g., that depression is common, treatment plans and goals, and other aspects of care.

It is important that the patient's personal goals are achievable. Getting dressed every day is possible; having a positive attitude is not. Reading Psalm 121 is possible; reading Deuteronomy is not; reading John 11:25-27 is possible; reading all of John is not. Identifying one good thing about self may be possible; feeling good about oneself in general is not.

Discussing feelings of sadness, guilt, and especially anger is helpful. However, there is a trap in talking about these negative feelings. The trap is a tendency to go over and over again the same sad and hopeless feelings and situations. Most people with depression need help to explore and thus deepen understanding of the feelings and troublesome life situations rather than just repeat them. Indeed, repetition of sad and hopeless feelings actually tends to deepen rather than alleviate the depression. Family caregivers may find themselves challenged by trying to help the patient deepen his understanding of feelings. Certainly many physicians, nurses, and social workers are challenged by patients with depression. The issue here is not that one comes up with some perfect statement or question through which the patient achieves lasting happiness; but that one stays with the patient through the good and the bad.

Suicide and Depression

Suicide is a risk in patients, especially older men, with serious illness, and the risk is probably increasing, in part because of assisted suicide being a topic of national discussion. Most people with advanced life-threatening illness have some thoughts about suicide. Factors that increase risk of attempting suicide include:

Unrecognized physical and/or mental problems further increases risk. Talking or hinting about suicide is the primary indication that a person is at risk for suicide. Risk is increased by specific and lethal plans. A person who says when and how he or she will commit suicide is at very high risk; threats to kill self with a gun are at highest risk. Get help. Helping a person who is suicidal is not a matter for an individual.

A basic approach to a person who might be suicidal includes, first, asking directly if he or she is thinking about killing themselves. This a hard question to ask. The tendency is to ask if the person if he or she is thinking about "hurting yourself" or a negatively phrased question that prompts the person to answer in a particular way, e.g., "You're not thinking about hurting yourself, are you?" The correct question is, "Are you thinking about committing suicide (or killing yourself)?" For a person who is thinking seriously about suicide, being asked this question usually brings immense relief because there is nearly always some degree of ambivalence in suicidal thoughts. Suicidal thoughts also tend to be limited to only the relief that suicide will bring; and may not include the reality that there won't be anyone left to feel the relief! Being able to talk about thoughts of suicide helps increase the rationality of the thoughts. Sometimes the precipitating problem, e.g., pain, depression, loss of control, etc. is manageable.

If the answer is yes, or one is convinced that suicide is likely, as noted above, get help. There are 24-hour suicide and crisis hotlines in most areas. Of course the physician and other health professionals should be involved and should take the matter seriously. A common intervention is to have the patient sign a written "no-suicide contract." Most psychiatrists, psychologists, social workers, and psychiatric nurses will be able to write such a contract and help in related measures. Guns and large amounts of lethal drugs should be removed from a suicidal person's control.

Suicide in terminal illness is a cry of despair. In addition to the psychological measures and symptom management discussed above, overall care and support should be increased.

Helping in Depression

  • Manage physical symptoms.
  • Rule out external causes, including medications, metabolic disorders.
  • Give medications, especially SSRIs such as Paxil, Prozac, etc. Tricyclic antidepressants such as Elavil are used less often than in the past, but are still helpful, especially in younger people. (recall 2-4 week time period before most anti-depressants take effect and mood is elevated).
  • Provide "psychoeducational " care, e.g., education, information, counseling.
  • Maintain hygiene, diet, other (limited) daily activities.
  • Stay aware of the difficulties inherent in helping when depression is a problem.
  • Ensure that goals are reasonable.
  • Allow expression of sadness, guilt, anger, other negative feelings; help deepen understanding of the depression rather than simply repeating it or changing the subject.
  • Be alert for and act on signs of suicidal thoughts.

Anger

Anger is a reaction to fear/threat or anxiety and is thus considered by some as a "secondary" emotion. There is much threat and anxiety in terminal illness and so anger is not uncommon. Often the anger is displaced to loved ones (and sometimes anger toward these is right on-target). God also receives a share of anger. Anger may be directly expressed with aggressive words or behavior; or indirectly expressed through passive-aggressive behavior, fault-finding, or as noted above, depression. Some anger may be reasonable and adaptive. However, a consistent pattern of anger that has a negative impact on relationships and functioning in life is neither reasonable nor adaptive. A pattern of anger indicates that the problem is within the person who is angry. Unfortunately, it is virtually impossible for most people to recognize this within themselves - the anger is always so justified.

One function of a consistent pattern of anger is to drive others away. Anger thus reinforces itself through creating isolation and loneliness, which in turn promotes fear and anxiety, and thus more anger.

There were times when, for no apparent reason, she would be angry and critical toward everyone around her. If she couldn't find anything to be angry or critical about in the present, she would either recall something from the past or goad someone into saying something negative, and then focus on the negative statement as evidence of how "nobody understands," and then get upset about that. Even with the realization that this is not unusual behavior, it was still hard for us to work so hard and then be criticized.

Helping in anger includes awareness of one's personal response to being around a person who is angry. Is the response avoidance? Anxiety and anger? Helplessness? Regardless of the specific response to being around an angry person, it is important to understand that there is always a response and usually a negative one. The goal in recognizing the response is simply to understand and perhaps develop some control over one's response. Changing the response or developing complete control may be too ambitious, especially within the context of a terminal illness. It is helpful to understand that some anger and/or irritability is present some of the time in most people with a terminal illness; and also in caregivers.

It is important to understand that anger has an important function: to express and in some ways, alleviate anxiety and fear. Thus helping includes understanding that anger has a function and at times, addressing the underlying issues is the best way to deal with anger. Helping a person exert control over decisions or events can be far more helpful than talking about how she or he feels about not having the control.

The person who feels anger should be able to express the anger verbally, including naming the object of the anger. Understanding the anger to a greater extent than that it exists and is the other person's fault best occurs after the storm passes. Understanding is promoted by identifying the words, situations, events, etc. that immediately preceded the anger. Accurately identifying precipitating events and the resulting feelings (other than anger) often helps in understanding and dealing with the underlying feelings of helplessness, fear, betrayal, anxiety, and so on.

While we wish it were not so, the fact is that being a patient is sometimes gratuitously dehumanizing. For a variety of reasons, the health care system and health care personnel can be thoughtless or even cruel. Anger at injustice or dehumanization is appropriate and should be heard. Doctors, nurses, social workers, chaplains, and all the rest should hear what we sometimes do to people. But rather than try to understand how we and the care we provide are perceived, we deliberately set up evaluations of care to get the answers we want: that we and our institutions are wonderful.

Helping in Anger

  • Understand the nature and function of anger.
  • Understand one's own response to anger.
  • Accept that some anger is inevitable in terminal illness.
  • Help or allow the verbal expression of anger.
  • Help identify and deal with the underlying feelings or issues behind anger, e.g., helplessness, fear, and loss of control.
  • Understand that anger is sometimes justified and appropriate.

Anxiety

Anxiety is the most frequent form of psychological distress in patients with cancer. It is experienced as dread, fear, nervousness, irritability, sleeplessness, changes in appetite, shortness of breath, craving for alcohol or drugs, and so on. Anxiety may be associated with the stress of disease or treatment, poorly managed symptoms, metabolic disease processes, side-effects of drugs, and other external causes.

A major etiology of anxiety in terminal illness is that the patient and family often have no clue about what is really happening and have lost all personal control over this enormously stressful situation. Anxiety in terminal illness may also be a continuance, exacerbation, or increase of or in a pre-existing anxiety disorder (but usually is attributed only to having the illness). In the latter, the problem is unmet past and present interpersonal needs.

Situational anxiety usually responds well to short-term or supportive therapy, including as an essential component, helping the patient and family understand what is happening with the illness, treatment, and their own situation(s). That is one of the primary reasons for this book. A key cluster of basic human needs is the need for understanding, order, and predictability. From day-to-day hospital or hospice routine to the real status of disease and treatment to the enormous questions of human existence, all of these needs are very commonly unmet in terminal illness. The patient and family feel like they have lost control over everything that matters.

Helping in anxiety includes managing symptoms. Control is increased (and anxiety decreased) when the unknowns of the illness and treatment, including organizational routines, are explained to the patient and family. But staff often seem too busy to stop and explain - "always in a hurry to help someone more important than me or do something more important than what I need." See the introductory chapter for tips on how to work with health care providers and gain a measure of control over the care. Patient and family involvement in decision-making and the care itself helps increase control. Although it may at first seem burdensome to expect the patient and family to participate in giving care, those who do participate seldom, if ever, regret their work.

Holding in the feelings of dread, etc. does not make the feelings go away; to the contrary, the feelings unexpressed only intensify in isolation. So it is helpful for patients to talk about their feelings with another person. It is most helpful to talk about what is feared and what intensifies the fear. Identifying and increasing understanding of underlying issues, e.g., fear of abandonment, helps the anxiety become more manageable.

Medications are helpful in managing anxiety, both intermittently, e.g., prior to a worrisome procedure, and on an ongoing basis. When anxiety and depression are mixed, a tricyclic antidepressant given in a low dose at bedtime may be the best option. Antidepressants with sedating properties are helpful in decreasing anxiety and depression and promoting sleep in many patients. These include trazodone (Desyrel), nefazodone (Serzone), and amitriptyiline (Elavil). Both long-acting benzodiazepines (tranquilizers) such as diazepam (Valium) and short-acting ones such as alprazolam (Xanax) are commonly used to treat anxiety. The short-acting medications are usually better in people with serious physical illness because the longer-acting medications may cause over-sedation.

Helping in Anxiety

  • Manage physical symptoms.
  • Increase patient and family control and involvement in decision-making and care. Understanding the illness, treatment, and hospital or hospice routines is very beneficial.
  • The patient and family benefit from exploring the anxious feelings, especially precipitating and underlying issues.
  • Medications are given both on an as-needed basis and regularly.

Spiritual Distress

Terminal illness threatens spiritual beliefs and needs in many people, including, at times, people of great faith. In the physical suffering and loss of hope we wonder what meaning there is in this. In the isolation of loneliness and lost relationships we wonder where is God and hear no answer. In the deep nights we lie awake and helpless in the face of our mistakes and shortcomings; and ultimately we face our fears and mortality.

The basic spiritual needs include meaning, hope, relatedness (to God or a higher power), forgiveness or acceptance, and transcendence. Meeting needs of meaning, hope, relatedness, and forgiveness or acceptance may result in transcendence of the psychological, social, and physical suffering in terminal illness. Transcendence may also come through grace or another process, or it may not come. Spiritual needs are most often addressed through faith and religion. In terminal illness, however, faith and religion are often called into question.

Unmet spiritual needs are expressed in many ways, some of which do not seem spiritual in nature. Depression, low self esteem, and guilt, for example may indicate underlying spiritual rather than psychological distress. Hopelessness and despair may indicate that the patient feels the suffering to be punishment or meaningless. Loneliness can be in relation to other people or may signify separation from God or spiritual community. In some people, there is a deep and intense longing that defies description; often it is longing for a relationship with God. Spiritual distress is also sometimes expressed through unrelieved physical symptoms.

An important issue in terminal illness is that of the meaning or meaninglessness of suffering. Is there meaning in the suffering of life and terminal illness? Sometimes the reality is that there may be aspects of life and suffering that seem devoid of meaning.

A perceived lack of meaning can lead to hopelessness. Indeed, many factors in terminal illness can lead to hopelessness. Cure is no longer a real possibility; some relationships are to remain broken; faith may be weaker than expected; dying is harder than expected. So another part of reality is that hope may fall away.

People who have turned away from faith and/or religion tend to be especially troubled by spiritual distress. After a lifetime of ignoring or rejecting spiritual matters it may seem very difficult to look to God or religion for help. But even those who have worshipped all their life may at times feel separate from God and faith, and have difficulty turning to God or religion.

One thing that helped was when her friend borrowed a hymnal from a church and brought it to her. She read it a lot, in part at least, to select music for her funeral. But I know that it helped to read and remember those old-fashioned Baptist hymns, The Old Rugged Cross, In The Garden, I Know that My Redeemer Liveth.

There may also be concerns about punishment for sins. All religions address the question of sin and its consequences; and sooner or later nearly all people wonder about these too. Often we wonder alone, knowing that our sins are great, and possibly (in our lonely minds), even unique, and that we are unworthy of forgiveness.

Helping in spiritual distress is centered on non-judgmental presence. Helping is first non-judgmental because the person in distress is nearly always doing more than enough judging already. Presence includes staying with or "watching" with the patient through all the doubts, fears, and loneliness of confronting death. My soul is very sorrowful, even to death; remain here, and watch with me (Matthew 26:38). This request for help does not call for another to give any answers, solve any problems, or do or say anything - only to "remain here, and watch with me."

Watching with a person who is dying does not even mean that the person's spiritual pain will be lessened. In some cases, the presence of another means that the patient can face even more pain. The purpose of working through spiritual crisis is not to avoid pain; but to face the reality of life: that we could have done better; that there were bad times; that we feel terribly alone. That is the way it is for nearly everyone! And, having looked at and suffered in these realities, we are better able to look at other realities of life: that we probably did pretty well, or at least tried hard at least some of the time; that there were good times; that we are not always alone.

Another way of addressing spiritual pain is for the person experiencing the pain to understand that the fear, guilt, questions, and other "failures of faith" are common and other people also struggle through them. The Bible, Old and New Testaments alike, are absolutely full of people who doubt and fear and question. Looking with open eyes at our own/the human condition must result in doubts and fears and questions. Who wouldn't? You may be alone at the moment, but you are not alone in these things!

Spiritual distress is best answered through faith; and if faith seems unreal and too distant, too difficult to find, then through religion. It is not that one always finds answers or solace through religion. It is just that over the past 20,000 years, religion is the best answer we have been able to come up with. In all those years, in suffering beyond all imagination, in millions upon millions of death; we find that we still look to faith, to God, to religion. So the goal is not to find the all the answers, but to look where we have always looked.

For Christians and Jews, Psalms are usually a good place to start. Psalm 22 speaks directly to people who suffer apart from God: My God, my God, why hast thou forsaken me? Why art thou so far from helping me, from the words of my groaning? O my God, I cry by day, but thou dost not answer; and by night, but find no rest. Psalms 23 and 121 bring back memories and hope: The Lord is my shepherd, I shall not want . . . Psalm 23. I will lift up my eyes to the hills . . . The Lord will guard you as you come and go, now and for evermore. . . Psalm 121

Passages from the New Testament that are speak directly to the questions of terminal illness include: I am the resurrection and the life . . . John 11:25-26 Let not your hearts be troubled . . . John 14:1-4 O death, where is thy victory? I Corinthians 15:54-56 Our Father who art in heaven . . . Matthew 6:9-13

Many people have strong spiritual resources in their church or synagogue. Others find that their clergy and/or spiritual community do not have a full grasp of what to do for someone who is terminally ill. It may be necessary to say very specifically and sometimes more than once what spiritual needs one has. For Christians, whether at home or hospital, it can be important and healing to take communion. Ministers sometimes need help in understanding the importance of bringing communion to patients. As noted in the chapter on being a "good patient," creativity is sometimes necessary to meet needs. A church school class might meet at the patient's home or hospital room. A few choir members can visit and sing for or with the patient and family. Audiotapes of hymns are readily available. There are many ways to enrich one's spiritual life.

As spiritual needs are met, transcendence begins to occur (or perhaps, transcendence occurs despite spiritual needs not met). Illness, suffering, loneliness, mistakes, fear, and the other negatives are transcended. Of course there are still times of fear and doubt, but the direction is beyond the old limitations. The ultimate meaning of life becomes possible: Reconciliation with self, others, and God.

Helping in Spiritual Distress

  • The greatest human need in relation to spiritual distress is non-judgmental presence.
  • Understand that doubts, fears, mistakes, and so on are universal.
  • Look to faith; and if there is no faith, look to religion. The purpose is not necessarily to find some perfect answer, but rather to look where we have always looked at times like this.

Positives

Terminal illness presents opportunities as well as problems. Like it or not, in the context of terminal illness, virtually everyone looks back and evaluates their life. Psychologists call this a life review. In a life review toward the end of life, it becomes more difficult to deceive oneself any longer. Old issues and conflicts that seemed buried long ago reemerge and are as painful as before. What seemed right or expedient at another time of life may be revealed as wrong or dishonest. We ask, "Whatever happened to (young, beautiful, hopeful, pure, etc.) me. . . " or "Why on earth did I . . . " Everyone makes mistakes and everyone has regrets. We all know that. Most of us did not set out to deceive a loved one; to hurt others and ourselves; to sacrifice love for greed. And nobody asked to be deceived; to be abused; to be forgotten. Yet it happens over and over again.

These are our mistakes and regrets and they can hurt. Ask this question: "If I had my life to live over again, what would I like to be different and what the same?"

Too often, life reviews and the questions they bring are done alone. Like so many other major questions, they occur in the deep nights when the person is alone and most vulnerable. Alone, the shortcomings and regrets seem overwhelming and many people shrink from the pain. But, especially when there is someone else present who is accepting and non-judgmental, the mistakes and regrets can be more easily explored. Once explored and understood, acceptance is far more likely. And, as the painful aspects of life are understood and accepted, the peaceful, the right aspects are easier to see. For many people, it is only through facing the pain of mistakes and regrets that the whole of life is understood.

Through the often painful process of life review and understanding why it was the way it was; and/or accepting the way it was, one of the goals of life is at least partly achieved: reconciliation with self. Certainly there may still be regrets - many wish it hadn't been like this and perhaps realize that it could have been better. But reconciled or "friendly" with self, it is possible to realize and accept that this was life.

Reconciliation with others may also occur in the crucible of terminal illness. Relationships long characterized by strife or banality (to cover strife) may be restored. The immediacy of terminal illness raises the question, "Is the conflict or injustice or childishness of long ago worth this anger or incompleteness?" In dealing with long-time strife or interpersonal difficulties in terminal illness it is not necessary or even advisable to work out the details of who did what when and who was at fault. (You will probably still disagree on that part!) The issue now is forgiveness on both sides.

Often, people find that despite reconciliation, the other person (never self, of course) still has some pretty irritating habits and ideas. Reconciliation does not mean that the people involved will develop a perfect relationship. Some do, many do not. One needs to have reasonable goals for self and others. At times the goal is to not fight. At other times the goal may be to work peaceably together; and at other times to love one another.

Over the last year of her life our relationship grew deeper and stronger. I know that had she not become ill we would have gone on as before. With the illness though we both knew that there would be far fewer tomorrows than we had planned. It was the hardest year of my life, and I'm grateful for it.

At times, it is not possible to find peace with another because the other is dead or otherwise incapable of participating in reconciliation. In such instances, reconciliation is to accept that the relationship was and is broken - and there is peace in this, too.

What now - now that I'm dying? Too often the answer is "Not much, just wait to die I guess." Remember though, terminal illness is still life; it may be short, but it is the only life left and within whatever constraints are imposed by illness and other factors, can involve choices. There countless variations in each life and situation. Among the more common choices to make are:

It seems like an injustice, but there is no escaping that making some of these choices is difficult and in many cases involves work and conflict. It would be nice if life got easier, but that is not usually the way it works.

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References

American Psychiatric Association (2000). Diagnostic and Statistical Manual (4th ed., text revision). Washington DC: Author.

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Byock, I. (1998). Dying Well : Peace and Possibilities at the End of Life. New York: Riverhead Books.

Doyle, D. (1992). Have we looked beyond the physical and psychosocial? Journal of Pain and Symptom Management. 5, 302-311.

Fallowfield, L.J., Jenkins, V.A., & Beveridge, H.A. (2002). Truth may hurt but deceit hurts more: Communication in palliative care. Palliative Medicine, 16, 297-303.

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Kemp, C.E. (in press). Spiritual care interventions. In B.R. Ferrell & N. Coyle (Eds.). Textbook of Palliative Nursing (2nd ed.). Oxford: Oxford University Press.

Kemp, C.E. (1999). Terminal Illness: A Guide to Nursing Care (2nd Edition). Philadelphia: Lippincott, Williams & Wilkins.

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McClain, C.S., Rosenfeld, B., & Breitbart W. (2003). Effect of spiritual well-being on end-of-life despair in terminally-ill cancer patients. Lancet. 361, 1603-1607.