Terminal illness

Terminal illness is a disease that cannot be cured or adequately treated and that is reasonably expected to result in the death of the patient within a short period of time. This term is more commonly used for progressive diseases such as cancer or advanced heart disease than for trauma. In popular use, it indicates a disease that eventually ends the life of the sufferer.

A patient who has such an illness may be referred to as a terminal patient, terminally ill or simply terminal. Often, a patient is considered terminally ill when their estimated life expectancy is six months or less, under the assumption that the disease will run its normal course. The six-month standard is arbitrary,^[1] and best available estimates of longevity may be incorrect. Consequently, though a given patient may properly be considered terminal, this is not a guarantee that the patient will die within six months. Similarly, a patient with a slowly progressing disease, such as AIDS, may not be considered terminally ill because the best estimates of longevity were greater than six months. However, this does not guarantee that the patient will not die unexpectedly early. In general, physicians slightly overestimate the survival time of terminally ill cancer patients, so that, for example, a person who is expected to live for about six weeks would likely die around four weeks.^[2]

Stages

Different patients react to the news that they have a terminal illness in different ways. In general, almost all patients go through various stages of acceptance when a disease like cancer has been diagnosed.^[3]

The first stage is disbelief. Most people are shocked that it could happen to them, there is extreme anxiety especially about the unknown. Shock, despair and anger are common. There is also guilt that perhaps the person has done something wrong to receive such a diagnosis.^[4] Some individuals use humor as a psychological defense mechanism; others become helpless and often start to bargain. This first stage usually lasts from a few days to many months.

The second stage is depression, which is usually a reaction to the diagnosis. The depression is mild to moderate in intensity and needs family support. The use of antidepressants can be helpful during this period.

Duration of depression often can last several weeks to throughout the illness. The goal is to help the person go into the final stage of acceptance.

Management

By definition, there is no cure or adequate treatment for terminal illnesses. However, some kinds of medical treatments may be appropriate anyway, such as treatment to reduce pain or ease breathing.

Some terminally ill patients stop all debilitating treatments to reduce unwanted side effects. Others continue aggressive treatment in the hope of an unexpected success. Still others reject conventional medical treatment and pursue unproven treatments such as radical dietary modifications. Patients' choices about different treatments may change over time.^[5]

Palliative care is normally offered to terminally ill patients, regardless of their overall disease management style, if it seems likely to help manage symptoms such as pain and improve quality of life. Hospice care, which can be provided at home or in a long-term care facility, additionally provides emotional and spiritual support for the patient and loved ones. Some alternative medicine approaches, such as relaxation therapy,^[6] massage,^[7] and acupuncture^[8] may relieve some symptoms and other causes of suffering.

Caregiving

For the person with a terminal illness, a caregiver is often needed. The caregiver may be a nurse, licensed practical nurse or a family member. The individual may require assistance from a caregiver to receive medications for pain and to control symptoms of nausea or vomiting. The caregiver can assist the individual with daily living activities and assist with movement. Caregivers provide assistance with food and psychological support and ensure that the individual is comfortable.

The patient's family may have questions and most caregivers can provide information to help ease the mind. Doctors generally do not provide estimates for fear of instilling false hopes or obliterate an individual's hope.^[9] In most cases, the caregiver works along with physicians and follows professional instructions. Caregivers may call the physician or a nurse if the individual:

• experiences excessive pain.
• is in distress or having difficulty breathing.
• has difficulty passing urine or is constipated.
• has fallen and appears hurt.
• is depressed and wants to harm themselves.
• refuses to take prescribed medications, raising ethical concerns best addressed by a person with more extensive formal training.
• or if the caregiver does not know how to handle the situation.

Most caregivers become the patient's listeners and let the individual express fears and concerns without judgment. Caregivers reassure the patient and honor all advance directives. Caregivers respect the individual's need for privacy and usually hold all information confidential.^[10]

Refusal of nutrition and hydration

People who feel they are near the end of their life often refuse food and/or water. Published studies indicate that "within the context of adequate palliative care, the refusal of food and fluids does not contribute to suffering among the terminally ill", and might actually contribute to a comfortable passage from life: "At least for some persons, starvation does correlate with reported euphoria."^[11]

Dying

Patients, healthcare workers, and recently bereaved family members often describe a "good death" in terms of effective choices made in a few areas:^[12]

• Assurance of effective pain and symptom management.
• Education about death and its aftermath, especially as it relates to decision-making.
• Completion of any significant goals, such as resolving past conflicts.

People who are terminally ill may not always follow recognizable stages of grief.^[13] For example, a person who finds strength in denial may never reach a point of acceptance or accommodation and may react negatively to any statement that threatens this defense mechanism. Other people find comfort in arranging their financial and legal affairs or planning their funerals.

See also

• Advance health care directive
• Anticipatory grief
• Do not resuscitate
• Euthanasia
• Interventionism (medicine)
• Liverpool Care Pathway for the Dying Patient
• Palliative care

References