Time of Uncertainty

Between the development of symptoms and a life-threatening diagnosis, patients and their families or loved ones have to endure a time of uncertainty. Uncertainty is anxiety producing. The nurse should assess for hopes, worries, fears, or anxieties a patient or family member may be experiencing. The best way to begin the intervention may be to gently tell the person what behavior or emotion you are observing and give it a name (e.g., shock, disbelief, fear, sadness). It is important to validate and seek the person’s agreement with or refinement of this perception.

Nursing interventions should help patients separate issues and decisions over which they have control from those they cannot change or control. This is an appropriate time to begin advance care planning. Ask whether the patient has an advance directive such as a living will and a health care power of attorney and the patient’s preferences about attempting cardiopulmonary resuscitation (CPR), intubation for feeding, or ventilatory support; limiting renal dialysis; or organ donation.

The competent nurse encourages patients to discuss their wishes about life-sustaining treatment with a surrogate decision maker. This is very important in the event that patients become unable to speak for themselves in the future. The health care surrogate may be called on to make a treatment decision if the patient becomes demented, experiences delirium, is in a coma, is intubated on a ventilator, or is sedated.

Concentrating is often difficult while waiting for a diagnosis. Providing distraction helps alleviate anxiety. Some patients find that a simple task such as checking e-mails or working with a puzzle book helps distract them from distressing and intrusive thoughts. Most children’s services have specialists, age-appropriate activities, and unique settings for seriously ill pediatric patients and their families where play therapy or counseling is provided.

Concerns of Patients and Family Members

If a diagnostic test or tumor biopsy is reported as normal or benign, patients and their family members usually experience relief. At this point, families may be open to education regarding healthy behaviors. They may be motivated to change unhealthy habits by losing weight, quitting smoking, exercising, complying with medication regimens, or choosing more healthy foods.

However, if the diagnosis shows pathology or malignancy, patients and families will have concerns, which they may or may not express. Many patients are afraid that verbalization of these fears may upset family members and therefore avoid voicing them. Nurses should ask questions about hopes and fears. Acknowledging these concerns with patients and families helps normalize them, and then they can be discussed with the health care team.

Concerns that patients frequently have include the following:

Patients and family members may project their anger and helplessness onto nurses or the medical team, complaining about things such as poor care, lack of communication, delay in call lights being answered, and the poor quality of the food that is served. Many patient and family complaints are valid. However, some complaints are maladaptive responses to loss of control and stress.

It is important for nurses to acknowledge complaints and respond to them with patience and without defensiveness. Family members tend to feel calmer, more satisfied, and more in control when problems they identify are attended to promptly and respectfully. Ways in which the nurse can respond to patient or family concerns include the following:

Box 40-2 lists some sample questions that may help disclose concerns at the time of diagnosis. The nurse’s language should be adapted to the developmental level, culture, spiritual beliefs, and educational level of the patient and to the communication style of the nurse.

Patients often share information about their illness with friends or relatives. Patients and family members also seek out information on medical conditions and treatments on the Internet. Nurses should direct them to reputable and accurate websites, such as the National Institutes of Health (www.nih.gov) or the National Cancer Institute (www.cancer.gov). Many of these sites have information in Spanish or other languages.

Anxiety

Pharmacological treatment with benzodiazepines for anxiety associated with medical illness is common practice, and nurses should initiate requests for an order if the patient does not already have one. Clinical indicators of anxiety in the medically ill person include expressions of fear or dread, persistent tachycardia or hypertension, hyperventilation, frightening dreams, difficulty sleeping, anorexia, or excessive worry. If a family caregiver appears overly stressed and anxious, the nurse may suggest that the caregiver ask his or her primary care provider for a short-term prescription to help cope.

Nonpharmacological interventions for anxiety reduction, such as soothing music, progressive muscle relaxation, or visualization exercise instruction, are readily available on CD or DVD.

Patient education materials designed to inform and change mistaken beliefs may allay anxiety. Some treatment programs have a list of former patients who are available to meet with newly diagnosed patients to describe their own coping experience.

Depression

Several symptoms of major depression are also symptoms of medical illness. Medically ill people may experience fatigue, have trouble sleeping, lose their appetite, or find it difficult to concentrate, yet not have clinical depression. One myth seen in health care is that if a person has a reason to be depressed, such as having cancer, no treatment is needed because this is a normal response. However, this myth denies the patient necessary and effective treatment.

Because selective serotonin reuptake inhibitors (SSRIs) and the newer classes of antidepressants have more tolerable side effects, clinicians are usually willing to prescribe antidepressants for seriously ill patients. If an antidepressant is abruptly stopped because the patient has become NPO (e.g., having surgery, being put on a ventilator), the nurse should be alert for uncomfortable and sometimes serious signs and symptoms of antidepressant discontinuation syndrome (see Chapter 26).

If a patient’s “prominent and persistent” depressed mood is believed to be related to the medical condition, antidepressant therapy is indicated. If patients show vegetative symptoms that interfere with self-care or if the able patient refuses to get out of bed or ignores meals, psychostimulants may improve appetite and provide energy and motivation. Patients who have had life-sustaining surgery that radically alters their physical appearance are especially prone to depression and lowered self-esteem and will benefit from antidepressants.

The nurse who observes a patient who is frequently tearful, irritable, fatigued, or apathetic; has a depressed mood; is socially withdrawn; wants the room kept dark; expresses hopelessness; or refuses to participate in rehabilitation efforts such as physical therapy should suspect depression. For inpatients, the nurse should request a psychiatric evaluation by a PCLN or psychiatrist. For an outpatient or long-term care facility resident, the nurse should make a referral to an available mental health provider. The following questions are helpful in assessing a medically ill patient for depression:

In addition to pharmacotherapy, patients may find comfort in a visit from a minister, pastor, rabbi, imam, or priest if the patient uses faith to cope. Some patients may experience spiritual distress and have doubts, fears, or other concerns involving their religious faith, beliefs, or practice. Others may feel guilty and believe their illness is punishment. Although the nurse may uncover these concerns, they are best addressed by referral to a spiritual advisor.

Caregiver Stress, Anger, and Sleep Deprivation

Caregiver stress is the emotional and physical strain experienced by a person caring for someone with a chronic debilitating disease or life-threatening condition. Caregivers may become patients themselves, especially if they neglect meeting their own needs. Nurses should inquire whether caregivers are remembering to eat, rest, or take prescribed medications and encourage them to take care of their own needs as part of caring for the person who is ill.

Those caregivers who have not developed coping skills needed for situations in which they are powerless to change the process or outcome may exhibit behavior nurses sometimes label as “controlling.” Skillful nurses offer them choices whenever possible to lessen the patient’s or family’s feelings of powerlessness and helplessness and to help them feel more in control.

Caregiver stress often is expressed as criticism or complaints. It is helpful for nurses to recognize this and not take these grievances personally or react with defensiveness or controlling behavior in response to them. Patients or family members may react with anger when a diagnostic procedure is delayed or postponed, a second or third round of chemotherapy is not working, or aspects of the patient’s environment are disturbing.

Stress becomes unmanageable when the family member has sleep deprivation. Sleep deprivation is a state of physical and mental exhaustion brought on by lack of sleep in which the abilities to concentrate and reason are disturbed and judgment is diminished. Nursing strategies for helping patients and family members with stress, anger, and sleep deprivation are outlined in Box 40-3.

BOX 40-3   HELPING PATIENTS AND FAMILY MEMBERS

• Patients often hear what you say through their mental filters of pain, fear, or anxiety and misinterpret or misunderstand what they are told. They may translate messages into what they wish to hear or are afraid they will hear. Ask them to repeat back to you what they have heard. You may need to repeat information several times.

• Set limits if the patient repeatedly puts on the call light after you have just been in the room and asked before leaving if the patient had any other needs. State firmly a length of time when you will check on the patient (15 to 30 minutes), and keep to that schedule. For consistency, document your approach in the care plan.

• Although it is helpful when family members stay with the ill person to provide moral support, it may pose a problem to either the patient or the nurse. Many caregivers are afraid that if their loved one dies while they are not there, they will somehow be negligent or may be seen as unloving. Empathize with the caregiver who may not have felt able to leave the hospital for days, but remind the person to get some sleep as well. Suggest to family members that they go home to sleep in their own bed or to take care of children, pets, plants, laundry, personal grooming, or bills.

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