Terminal illness

A terminal illness is a disease or medical condition for which no curative treatment exists and which will likely result in the permanent incapacitation or death of the patient in the relatively near future. People with such conditions may opt for treatment programs intended to slow the progression of symptoms, reduce pain, or improve their physical and/or psychological comfort. In other cases, patients may pursue holistic, alternative, experimental, or otherwise unproven treatments in the hope that the divergent protocol may improve their prognosis. Some may opt to cease treatment altogether to allay uncomfortable side effects.

While it is common for people who have received a terminal diagnosis to progress through the well-known and clearly defined stages of grief outlined by the Kübler-Ross model and similar psychological theories, others may react differently. The concept of euthanasia, or an individual's decision to end his or her own life, is closely related to terminal illness and has emerged as a noteworthy topic of debate.

Background

While many diseases and medical conditions can result in the death of the patient, a terminal illness is differentiated by the lack of proven treatment programs that can cure the disease or the progression of the disease to the point that curative treatment will no longer be effective. Medical professionals stress the importance of early diagnosis for potentially terminal illnesses, such as cancer, which stand a statistically superior chance of being successfully treated if detected before they have the opportunity to spread beyond the primary site into other parts of the body.

Beyond the medical implications of terminal illness, patients must typically take interpersonal relationships and legal issues into account in the immediate aftermath of a terminal diagnosis. Terminal illnesses often exact a deep psychological and emotional toll on loved ones, and the patient may use the opportunity to resolve conflicts or achieve unmet personal goals before the disease progresses to its final stages. From a legal standpoint, patients facing terminal illnesses may have to make complicated and difficult decisions regarding their wills, property, health care directives or advance directives, and final wishes regarding to the handling of their remains.

The widely accepted legal definitions of terminal illness largely align with the medical definition but also address questions related to the patient's cognitive state and ability to make important end-of-life decisions. From a legal standpoint, it is necessary for the patient to be of sound mind when making such decisions for them to be legally binding.

To prevent complications regarding an ill or injured individual's medical treatment, people can elect to file what is known as a living will. Living wills are legal documents that cover an individual's wishes regarding life-sustaining medical procedures in the event that the individual finds him- or herself unable to communicate those wishes on his or her own. They can be created at any stage of a person's life, so long as the individual is of the age of majority and has the cognitive ability to make the decisions covered by the document. People who do not already have a living will frequently elect to make one after receiving a terminal diagnosis, especially in cases where the terminal disease is expected to leave them physically or neurologically incapacitated.

Overview

While a universally applicable model for the psychological and physical progression of a terminal illness does not exist, some aspects do apply to a significant percentage of cases. The Kübler-Ross model is the best-known example of how a person copes with a terminal diagnosis and contains five distinct stages. The theory was developed by Swiss-born psychiatrist Elizabeth Kübler-Ross and was first described in her seminal 1969 book On Death and Dying.

According to the Kübler-Ross model, the first stage in dealing with a terminal diagnosis is denial. At this stage, the patient does not accept the diagnosis and refuses to believe that the illness will result in his or her death. Denial is frequently accompanied by isolation, during which the patient eschews contact with other people.

In the second stage, the patient typically becomes angry and may lash out at strangers, acquaintances, friends, and loved ones. It is also common for a terminally ill person in the anger stage to project hostility onto caregivers, including doctors and nurses.

The third stage is known as the bargaining stage, and Kübler-Ross noted in On Death and Dying that this stage is particularly difficult to study or quantify, as it typically takes place entirely within the patient's internal world. The patient may attempt to strike a deal with God or other religious figures, agreeing to become a better person in exchange for prolonged life. Alternately, the bargaining stage may consist of the patient trying to postpone his or her inevitable death so that he or she can survive long enough to achieve personal goals that have not yet been met.

In the fourth stage, the patient may sink into a prolonged depression, realizing that loss of life cannot be avoided. The patient may give up his or her career, hobbies, or favorite activities, seeing no point in continuing to pursue them. Kübler-Ross differentiated between "reactive depression," which mourns for things the patient has already lost, and "preparatory depression," which is sadness felt for things that are yet to come, such as the grief loved ones will feel when the terminal illness finally results in the patient's death.

Finally, the patient progresses into the acceptance stage. In most cases, this stage is marked by a resigned attitude toward death. Kübler-Ross noted that some patients continue to fight their terminal illnesses right up to the moment of death, and those who do will not experience the acceptance stage.

The physical symptoms of terminal illnesses vary depending on the nature of the disease, but they also tend to follow a generalized pattern as the individual nears the end of his or her life. It is common for terminally ill people to become frail, losing weight and muscle mass while feeling weak and fatigued. Many patients experience feeling too hot or too cold, as terminal illnesses frequently affect the body's ability to control its internal temperature. Patients tend to eat and drink less and frequently lapse into unconsciousness during the final phases of the illness before passing away.

The controversial question of human euthanasia is closely linked to terminal illness. While some people would prefer to end their own lives rather than endure the pain and debilitation of terminal illnesses, voluntary active euthanasia (VAE), in which the doctor takes an active role in carrying out the patient's wish, and physician-assisted suicide (PAS), in which the doctor makes the means of suicide available to the patient, remain illegal in many countries. As of 2018, some form of euthanasia or medically assisted suicide is legally available to patients of sound mind in Belgium (both VAE and PAS), Canada (both), Colombia (VAE), Finland (PAS), Germany (PAS), Japan (passive and active euthanasia), Luxembourg (both), the Netherlands (both), and Switzerland (PAS). As of April 2018, several states in the US allow PAS; active euthanasia is illegal throughout the country. States that allow PAS include California, Colorado, Montana, Oregon, Vermont, and Washington, as well as the District of Columbia. Hawaii's death with dignity statute was approved in 2018 and goes into effect on January 1, 2019.

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