Despondency
Despondency—a mixture of dread, bitterness, and despair— is the result of an attack on the patient’s self-image. The patient feels broken, scarred, and ruined. Work and personal relationships appear jeopardized. It may seem too late to realize cherished goals. The patient is haunted by disappointment with both what has been done and what has been missed. He or she may feel old and that life has been a failure.
Despondency is a contagious feeling, and in most cases, the physician can sense that the patient is depressed. Simply asking about the depression is helpful: "You look a bit blue today. What’s on your mind?" The patient is likely to respond with the feelings already described. The patient should be told that such feelings are a normal part of any serious illness. It is important to remind even those who deny despondency that there is nothing unusual about feeling low from time to time in the struggle with any illness and that these feelings are time-limited. When the patient has acknowledged feelings of depression, even in the first few days of illness, it is very helpful if the physician describes future plans for medical treatment.
Depression
The more seriously ill a patient becomes, the more likely it is that a major depression will develop.32 In a review of the literature, major depression was reported to affect as many as 29% of palliative care patients33; however, this figure may be low. Researchers identified depression in 62% of patients in a palliative care unit in Winnipeg, Canada.34 Standard depression inventories (e.g., Beck) are not as useful for diagnosing depression in terminal patients, because some of the physical symptoms of depression that these inventories target can occur in terminal illness without depression. At present, there is no validated instrument to assess depression in patients with terminal illness, although research is under way. Emotional symptoms remain helpful, however.35 These include anhedonia, depressed mood, suicidal thoughts, and guilt.
Patients in pain have a significantly higher rate of depression than comparable patients without pain.36 Extreme depression and hopelessness are the strongest predictors that patients may develop a desire for hastened death.29 Ganzini and colleagues37 documented that severely depressed patients make more restricted advance directives when depressed and change them when the depression is in remission.
Dignity therapy, a novel psychotherapeutic intervention, may hold promise as a treatment for depression in palliative care patients. As part of the intervention, patients are asked to discuss issues that matter most to them or that they most want remembered by their families; these discussions are recorded and transcribed for the patients and their families. In a multicenter study, the majority of patients who received dignity therapy reported a heightened sense of dignity (76%) and an increased sense of purpose (68%) after the intervention.38 These results suggest dignity therapy may be useful in treating depression and distress common in palliative care patients.
Pharmacologic options for depression in palliative care extend beyond the traditional agents [see Table 1]. Because standard antidepressant medications typically require several weeks to take effect, psychostimulants such as methylphenidate (Ritalin) and pemolin (Cylert) are increasingly being used for short-term treatment of depression for terminally ill patients in pain. They may be used instead of traditional antidepressants, in patients whose life expectancy is less than 3 weeks, or as an interim measure until traditional antidepressants take effect.39 They are also useful to counteract opiate-induced sedation and may potentiate opiate analgesia.
Table 1 Antidepressant Medications Used in Patients with Advanced Disease3756
|
Class |
Agent (Trade Name) |
Dosage |
|
Tricyclic antidepressants |
Amitriptyline (Elavil) |
10-150 mg p.o./I.M./p.r., q.d. |
|
Clomipramine (Anafranil) |
10-150 mg p.o., q.d. |
|
|
Desipramine (Norpramin) |
12.5-150 mg p.o./I.M. q.d. |
|
|
Doxepin (Sinequan) |
12.5-150 mg p.o./I.M. q.d. |
|
|
Imipramine (Tofranil) |
12.5-150 mg p.o./I.M. q.d. |
|
|
Nortriptyline (Pamelor) |
10-125 mg p.o., q.d. |
|
|
Bupropion (Wellbutrin) |
200-450 mg p.o., q.d. |
|
|
Citalopram (Celexa) |
10-60 mg p.o., q.d. |
|
|
Fluoxetine (Prozac) |
10-60 mg p.o., q.d. |
|
|
Second-generation antidepressants |
Fluvoxamine (Luvox) |
50-300 mg p.o., q.d. |
|
Mirtazepine (Remeron) |
15-45 mg p.o., q.d. |
|
|
Paroxetine (Paxil) |
10-60 mg p.o., q.d. |
|
|
Sertraline (Zoloft) |
25-200 mg p.o., q.d. |
|
|
Trazodone (Desyrel) |
25-300 mg p.o., q.d. |
|
|
Venlafaxine (Effexor) |
37.5-225 mg p.o., q.d. |
|
|
Dextroamphetamine (Dexedrine) |
2.5-20 mg p.o. in the morning and at |
|
|
Lithium carbonate |
noon* 600-1,200 mg p.o., q.d. |
|
|
Psychostimulants |
Methylphenidate (Ritalin) |
2.5-20 mg p.o. in the morning and at noon* |
|
Pemoline (Cylert) |
37.5-75 mg p.o. in the morning and at noon* |
*Give last dose at noon to avoid insomnia at night.
Of the antidepressant agents, the selective serotonin reuptake inhibitors (SSRIs) are associated with fewer side effects than traditional tricyclic agents, which are associated with a high incidence of anticholinergic toxicity, including constipation, urinary retention, confusion, and altered cardiac conduction. The SSRIs (fluoxetine, sertraline, and paroxetine) are effective antidepres-sants and are generally well tolerated. Major side effects include anorexia, nausea, restlessness, and insomnia. Antidepressants with demonstrated efficacy as adjuvant therapy for treatment of pain include the tricyclic antidepressants and paroxetine.
Personality Disorders
Seriously ill people share common objectives with their physician: the relief of suffering and, as far as possible, the restoration of health. Dysfunctional personality traits (e.g., passive, hysterical, obsessive, dependent) that are the residue of past problems, such as parental conflicts, can distract both patient and doctor from those shared objectives. The doctor has enough to do to care for the physical illness and its normal emotional consequences to the patient (e.g., fear, anger, or despondency) without trying to alter personality traits. If reasonable efforts do not suffice, further intervention is best left to a consulting psychiatrist.
Preparation for the End of Life
The choice of where to die
Where a person wishes to spend the end of his or her life is a very personal decision. The options are to remain at home, to move to an inpatient hospice [see CE:IX Palliative Medicine], or to die in the hospital. Factors that influence this decision include the degree of support at home to care for the patient (emotional and physical), how comfortable the caretakers are with the care of a person who is dying, financial resources, and the technical support needed to keep the patient comfortable. In most cases, special equipment and services can be set up in the home, but this can be prohibitively expensive.
If it is anticipated that the patient has less than 6 months before death, this is an appropriate time to discuss hospice, whether inpatient or at home [see CE:IX Palliative Medicine].
Health care providers frequently overlook the financial burden for patients and families resulting from terminal illness. Financial costs can be devastating. It is important to address this issue with patients and families and to refer them to appropriate financial counseling. Social workers can provide invaluable assistance in facilitating the provision of the home services to which patients are entitled under Medicare or Medicaid, and they can usually tell the patient and family what services will have to be paid for out of pocket.
Remember that while patients are in the hospital, caregivers surround them. When they return home, they often feel isolated and abandoned. Every effort should be made to maintain channels of communication among patients, family, and home health care workers.
Advance Directives
It is a mistake to delay the discussion of advance directives until the patient is in the terminal stages of illness. Rather, this issue should be dealt with soon after the diagnosis of terminal illness [see CE:IX Palliative Medicine].
Final Closure
The end of life is the opportunity for closure in relationships with loved ones. Relationship completion comprises five types of communications: I forgive you; forgive me; thank you; I love you; and good-bye.40 These messages are vital to the peace of mind of the patient and the patient’s family and should be encouraged by the physician as an aspect of standard palliative care.
Other actions that help with life’s closure are a discussion of personal preferences for a memorial service, the settlement of financial affairs, and, if applicable, the completion of a plan for care of the children.
The physician should instruct the family in practical considerations concerning their loved one’s death. For instance, the family should be told that there is no need to call 911 when the patient dies; instead, they should contact the funeral director. If a patient is dying at home and the family panics and calls 911, it is important that they have a "Do Not Resuscitate (DNR)" form in the home. Otherwise, the emergency medical services in some states are required to automatically intubate the patient.
Grief and Bereavement
In one respect, life can be described as one loss after another. The degree of recovery from each loss determines whether an individual regains a stable life or remains disabled. When losses occur, the resulting sadness can eventually give way to a process of reorganization that restores the person’s ability to function normally. For example, the death of a parent can cause a child to become self-reliant. Some persons maintain a satisfying, productive life despite seemingly overwhelming losses, whereas others never recover from less severe losses. What makes the difference?
Normal grieving
Grief is the psychological process by which an individual copes with loss, struggles to understand it, regains perspective, and goes on with life. Causes of grief include not only the loss of a loved one, of valued possessions, or of employment but also the loss of good health that occurs with major illness or injury. Serious illness or injury challenges personal integrity; it could be said, for example, that every myocardial infarction causes an ego infarction. Therefore, recovery from major illness is not complete until the patient has also recovered from the accompanying emotional damage to the self.
Surrounded daily by the sick and injured, physicians see grief-work in process. It is important for the physician to realize that grief is a normal reaction serving an important restitutive function, that it follows a typical pattern, and that marked deviation from this pattern may be a sign that psychological intervention is required.
The normal grieving process follows a similar course in individuals suffering from any serious loss. Several prominent features of normal grieving have been identified.41,42 Because these features are often mistakenly labeled as pathologic, familiarity with their correlation to grief can prevent well-meaning but misguided efforts to intervene in a necessary process.
Somatic symptoms of grieving may be prominent, including sighing respirations, exhaustion, gastrointestinal symptoms of all kinds, restlessness, yawning, and choking. Feelings of guilt, especially early in the wake of loss, seem to be universal. "What more could I have done?" or other references to unresolved emotional conflicts are common expressions of these feelings.
Preoccupation with the image of the deceased person, often seeming bizarre even to the griever, is a sure sign that normal mourning is under way. The intense focus on the deceased may be manifested in several ways: by continual mental conversations with the dead person; by a sense of the dead person’s presence so vivid, especially at night, that the griever hears, sees, or is touched by the person; or by the simultaneous feeling that all other persons are emotionally distant.
Hostile reactions and irritability also seem to be the rule, combined with a disconcerting loss of warm feelings toward others. Some disruption of normal patterns of conduct is present, such as a desire to be alone, uncharacteristic procrastination, and in-decisiveness toward others. The style, traits, mannerisms, or even the physical symptoms of the dead person may alarmingly appear in the mourner; such identification phenomena signify only that grief is in process. Finally, it is routine for the griever to feel that part of the self has been destroyed or mutilated.
How long will it take for the acute symptomatology of grieving to subside? Although the usual estimate is 1 to 3 months, many factors affect the actual time required. They include the number of strong remaining relationships, the intensity and duration of the bond with the lost person, the number and severity of any unresolved conflicts, the degree of dependence on the lost person, and how much of the survivor’s mental life habitually assumed the dead person’s physical or emotional presence. The main signs of resolution of acute grief are the reappearance of normal functioning, the capacity to experience pleasure, and the ability to enter new relationships.
The acute phase is followed by the disorganization phase. In this phase, the pain of the experience becomes foremost in the person’s consciousness. Turmoil, emptiness, despair, and thoughts about the pointlessness of life and the reasonableness of suicide are common. Social interaction seems impossible and is avoided, even though solitude itself is dreaded and intolerable.
Finally, there is reorganization, characterized by a return of normal functioning and behavior. Reversals during this time are the rule, and reappearance of the earlier two phases should be expected. The bereaved person is caught off guard by sudden reminders of the lost person (e.g., a special coat discovered in storage) or by new and painful realizations (e.g., no more shared holidays) that reopen the wound of loss.
The grieving process is often delayed when death follows a prolonged and difficult illness. In such circumstances, death is entirely acceptable, even welcomed as the end of suffering. Later, especially when returning to a scene that sharply evokes the memory of the dead person when healthy, death becomes unacceptable, and feelings of protest or resentment spontaneously emerge.
Abnormal Grieving
Preexisting personality traits in survivors can interfere with the normal grief process. Additionally, survivors are at heightened risk of abnormal or complicated bereavement if the loved one died suddenly or unexpectedly, if the death was violent, or if no bodily remains were found. Because grief serves an important restitutive function, failure to grieve normally may result in serious psychological symptoms.
Some markers of abnormal grief are evident immediately; others do not appear for 3 months or longer after the loss. An inability to grieve immediately after the loss, typically manifested by absence of weeping, is the best predictor of later problems. Prolonged hysterical grieving that is defined as excessive by the individual’s own subcultural norms (not those of the physician) is an equally ominous prognostic sign. Overactivity without a sense of loss is an early sign of distorted grieving. Furious hostility against specific persons—for example, the doctor or hospital staff—which may assume true paranoid proportions, can be regarded as a sign of abnormality when the individual dwells on it to the exclusion of the other concerns of normal grief. A suppression of hostility to the degree that the person’s affect and conduct appear frozen (masklike appearance, stilted robotlike movements, and no emotional expressiveness) and self-destructive behavior (giving away belongings, foolish business deals, or other self-punitive actions with no attendant guilt feelings) are also early indicators of abnormal grieving.
Ultimately, it may become apparent that social isolation has become progressive, with a lasting loss of interpersonal initiative. When symptoms of the deceased person appear in the survivor as conversion symptoms or have become the focus of hypochondriacal complaints overshadowing all other manifestations of grief, pathologic grief is likely. Unresolved grief can also be suspected when the dead person is portrayed either as a saint who had no shortcomings or as one who never occasioned the least feeling of anger, burden, or disagreement in the survivor. In such cases, the mourner usually harbors intense feelings that are in conflict with those feelings outwardly expressed, and fear that these feelings will be discovered immobilizes the grieving process.
The result of prolonged grieving may be prolonged sadness, social isolation, somatic complaints, or loss of ability to function. A few sessions with a psychiatrist, aimed at helping the patient bring his or her own feelings into the open so that the process of grieving can be completed, often provide great relief.
Helping the Bereaved
Mourners tend to be outcasts from society. Their presence is painful to many around them, and efforts to silence, impede, or stop the manifestations of their grief are common. Allowing the grieving person to express feelings is essential, however. Most important is avoidance of maneuvers that negate grieving, such as cliches ("It’s God’s will"), efforts to distract ("After all, you’ve got three other children"), and outright exhortations to stop grieving ("Cheer up, life must go on").
Seeing the body of the deceased facilitates grieving, probably by establishing the irrevocable fact of death.39 Permitting survivors to express their feelings and reminders that grief is a normal process are helpful. Gentle review of the deceased person’s last days of life, last conversations, and final exchange of words, as well as talking about the deceased’s general lifestyle, help initiate grieving. The memories most obstructive of grieving are those of hostile interactions with the deceased and any other interactions that leave the survivor feeling guilty. The more negative these interactions were, the longer it takes to begin recalling and discussing them.
In helping the bereaved, presence means more than words. Someone who can remain calm and accepting in the presence of a weeping, angry, or bitter mourner is highly valued. A hand on the shoulder can be just what is needed. Over time, helping the griever complete memories of the deceased also facilitates mourning. Old photograph albums and letters can be helpful in this regard. Anniversaries are key points in the grieving process, and special attention to the bereaved on these days is a basic element in the care of mourners.
A return to a job is an essential feature of the recovery process because it brings the mourner back into contact with concerned fellow workers. In addition, the therapeutic effects of work on self-esteem play an important part in alleviating the narcissistic component of the response to the loss. Most bereaved persons benefit from returning to work within 2 to 4 weeks after the death of a loved one.
Self-help groups can be extremely effective for permitting expression of emotion, showing that grief is universal, and supplying the compassion and respect necessary for rebuilding self-esteem.
Specific Types of Loss
Each type of loss carries specific challenges to mourners, and each type has a specific literature that can be helpful.43 Loss of a parent by an adult, although a nearly universal occurrence, is not trivial, and loss of the second parent may leave the bereaved feeling particularly alone and vulnerable. Loss of a parent by a child invariably worries the adult survivors responsible for the child’s care because successful mourning in a child is a more complex process than in an adult.44,45 For example, the child may face adjustment to parental surrogates, to a parent stressed by the responsibility of raising the child alone, to the loss of a gender role model, or, eventually, to the replacement of the deceased parent by remarriage and competition for the affection of the surviving parent. However, studies of bereaved children from stable families have shown optimistic results: 8 weeks after the death of a parent, children 5 to 12 years of age were similar to nonbereaved children in school behavior, interest in school, peer involvement, peer enjoyment, and self-esteem.46
Research on loss of a sibling appears to be lacking, but the available data indicate that death of a sibling forces surviving siblings to reorganize their roles and relationships with their parents and with one another.43
Loss of a spouse, ranked on life-event scales as the most stressful of all possible losses,47 is more detrimental for men than for women and leads to increased morbidity and mortality in elderly men.48 The bereaved spouse is left with sole responsibility for children, finances, management, and planning; faced with possible loss of income; and forced to cope with a changed social role in the community.
Each year, about 800,000 parents lose a child younger than 25 years. This loss is particularly traumatic because it is so contrary to life-cycle expectancies.
Sudden death, such as death in an emergency ward, stillbirth, sudden infant death, accidental or traumatic death, cardiac arrest, or death during or after surgery, inflicts a uniquely intense trauma on the survivors. Shock is dramatically intensified. Guilt is likely to be a much more serious problem than it is with non-sudden death because of the total absence of preparation. Violence or disfigurement further intensifies the survivor’s feelings.
General rules for dealing with the bereaved also apply here, with certain specific emphases. The chance to view the body, even when mutilated, should be offered to the family members. If there is severe mutilation, the family should be warned. The need to view the body, an aid to normal mourning, is greater when death is sudden.
Suicide is an especially difficult way to lose a loved one. Feeling abandoned and rejected, the survivor often experiences unsettling anger or, if the relationship had been hostile and stormy,equally unsettling relief. The bereaved scours through memories for an action that might have caused or prevented the suicide. Guilt is such an inevitable consequence of suicide that even casual acquaintances wonder what they might have done that contributed to the death. Shame can cause avoidance of others, falsification of the event as an accident, or unwillingness to let others know that a family member has died. A scapegoat may be sought, such as the deceased’s therapist, spouse, or boss or the medical examiner who labeled the death a suicide.50
Loss by homicide also produces especially intense grief reactions.51 Flashbacks of the violent death are unavoidable. Survivors tend to avoid locations associated with the death and to stop watching television news because of possible reports of violence. Rage and desire for proportional revenge may cause intense discomfort for the bereaved, if suppressed, or for those around the bereaved, if excessively expressed. Children who witness the murder of one parent by another are afflicted with traumatic intrusive memories of the parents, massive conflicts of loyalty, and the intense need for secrecy because of the stigmatizing nature of their loss. They may inadvertently become so-called neglected victims and are at risk for perpetuating an inter-generational cycle of violence.52,53
Patience and gentleness with the family’s prolonged numbness and shock are essential features of caring for bereaved family members. Physical acts of kindness may be the only avenue of communication at first. Leading the family to a quiet room, providing comfortable seats, bringing beverages, and making sure that all possible members are included are all helpful and may lay the groundwork for dialogue.
Immediately after imparting the news of death, the physician may be able to bring the family together and start a dialogue by offering to give them as detailed an account as possible. Teamwork is usually required to get everyone present and seated with beverages, ashtrays, and any other comforts that seem appropriate. Survivors may benefit from very gentle questions about the last hours of the deceased: Were there any prodromal syndromes? Any premonitions? Who saw the deceased last? Families who do not wish to explore these crucial questions at this time should not be pushed, however.
A chaplain, nurse, or other team member with counseling skills, present from the time the physician begins communicating the bad news, may be able to address sensitive issues that arise. Family members or other supportive figures (e.g., family doctor or clergyman) who are absent should be notified and asked to come to the hospital when appropriate. When the family members are too shaken to sit down or participate in any dialogue, it is important to leave them a telephone contact at the hospital should any questions arise.
Medications and Bereavement
Treatment of bereavement-related major depressive episodes has recently been shown to be beneficial. In one trial, persons who had lost their spouses within 6 to 8 weeks and met the Diagnostic and Statistical Manual of Mental Disorders, fourth edition (DSM-IV) criteria for a major depressive episode were treated with sustained-release bupropion. Improvement was noted in both depression and grief intensity.54 In another study, persons with major depressive episodes that began within 6 months before or 12 months after the loss of a spouse were randomly assigned to a 16-week double-blind trial of one of four treatments: nortriptyline plus interpersonal psychotherapy, nortriptyline alone in a medication clinic, placebo plus interpersonal psychotherapy, or placebo alone in a medication clinic. Nortripty-line proved superior to placebo in achieving remission of bereavement-related major depressive episodes, but the combination of medication and psychotherapy was associated with the highest rate of treatment completion. The investigators concluded that the results support the use of pharmacologic treatment of major depressive episodes in the wake of a serious life stressor such as bereavement.
