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Terminal Illness

Terminal illness is a medical term popularized in the 20th century to describe 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 which will eventually end 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 to be terminally ill when the life expectancy is estimated to be 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 survival so that, for example, a person who is expected to live for about six weeks would likely die around four weeks.[2]

Stages

Elisabeth Kubler Ross, a pioneer in the study of death and dying, identified what she believed to be the five stages of dying. Those that people pass through as a result of a terminal illness in an adjustment to death. They include denial, anger, acceptance, bargaining, depression, and acceptance.

The first stage, denial, is thought to be the patients initial reaction to dying. Denial is used as a defense mechanism for the patient to avoid the implications of their terminal illness. Reactions can include the patient acting as if the illness is not severe, or that may go away quickly. In some extreme cases patients have been reported as denying that they actually have a disease, even after a clear diagnosis. Thus the denial stage is a subconscious way of blocking the full realization of the implications of being diagnosed with a terminal illness.

The third stage is bargaining. The patient has decided in this stage to try another strategy other than anger, and that is trading good behavior for good health. This behavior usually involves some pact with God, and the signs may include the patient acting uncharacteristically pleasant or a overtly charitable.

Following is the fourth stage, depression. At the this stage the patient has realized that they have little to no control on over the progression of their illness. This could come on as a result of worsening symptoms or other evidence that the illness is not being cured. As a result of this realization the patient may feel nauseated or tired, they also may have trouble eating, keeping focused attention, and my constantly feel they cannot escape pain or discomfort. Ross believed that this depression was a result of the patient mourning the aspect of their own death, know as anticipatory grief. The depression often comes in two waves, first the sense of the loss of past relationships and valued activities, and second the realization of the loss of future relationships and activities. Although unpleasant this depression can actually help the patient begin to prepare for the future, and for that reason it may be wise to not intervene on the depression immediately and let it run its course for a short while.

{{fontcolor|red|The final stage is acceptance, the patient now is too physically weak to be angry and so familiar with the idea of dying that they are no longer depressed. Thus calm, although not necessarily pleasant, comes over the patient with the feeling of being tired but peaceful. Some patients may use the last of their time dividing up personal possessions and saying their last goodbyes to family and friends.

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 complementary medicine approaches, such as relaxation therapy,[6] massage,[7] and acupuncture[8] may relieve some symptoms and other causes of suffering. [edit]

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 will allow the individual to express their fears and concerns without being judgmental. Caregivers reassure the patient and honor all advanced directives. Caregivers respect the individual's need for privacy and usually hold all information confidential.[10] [edit]

Home care. Many people choose to die at home or in the home of a family member. You can assume the role of caregiver or hire home care services for support. Hospice care — services that help ensure the highest quality of life for whatever time remains — can be provided at home as well. Inpatient care. Some people may prefer round-the-clock care at a nursing home, hospital or dedicated inpatient hospice facility. Hospice and palliative care — a holistic treatment approach intended to ease symptoms, relieve pain, and address spiritual and psychological concerns — can be provided in any of these environments.

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]

Significance to Patient

The physical dependance the patient has on the hospital staff is large, considering the patient may need help with he most simple tasks such as going to the bathroom, brushing their teeth, or even turning over in bed. The hospital staff may also be the only people who know the the patients actual physical state, thus being the patients only source for reliable, unbiased information. Also the staff may be the only people who know the patients true feelings, as they may be cheerful in front of visitors and family in an attempt to not upset them. The medical staff is even of more importance to those patients without friends or family who can visit them regularly, as the staff will be the only people that see the patient regularly. Also, the staff is important emotionally as they are exposed to the most personal and private time of persons life, their process of dying.

Risk to the Staff

Terminal care is very hard on the hospital staff. Being palliative care, it is usually the most uninteresting for the staff. Palliative care is directed at the comfort level of the patient, unlike curative care which is directed at curing the patients disease and therefore palliative care is far less stimulating work for the staff. Terminal care involves a lot of unpleasant work, including feeding, changing, and bathing the patient. The staff is negatively effected emotionally, as they may become burnt out after seeing patient after patient continue to die. This can cause the staff to act more withdrawn in their treatment, more of an efficient style to their care instead of a warm, supportive, and personnel nature to their care.

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. [edit]

Psychological and social issues related to dying include changes in the patients self concept. They may have difficulty maintaining control of their biological functions, including mental regression and the inability to concentrate. Socially the patient may fear that their condition will upset visitors, and they may experience withdrawal from family and friends because they either have a fear of depressing others or a fear of being a burden on others.

Do Not Resuscitate Order

The DNR Order is the belief that people have the right to refuse CPR, life support, or other options that may save their life if their heart or breathing were to stop. It is a way in which people are allowed to die with dignity, and not be left as a vegetable relying on life support machines to keep that individual alive.

Euthanasia or assisted suicide involves the help by a physician in ending the life of the terminally ill patient upon their request. Although most states do not allow euthanasia in 1994 Oregon passed a law permitting physician assisted dying. This was followed by the Supreme Court Decision in 1997 that ruled physician assisted death is not a constitutional right, however it is not a federal matter and therefore should be decided in each state. A living will is a request from a patient that extraordinary life-sustaining procedures not be used if person is unable to make this decision on his/her own. In medicine, a "do not resuscitate" or "DNR" , sometimes called a "No Code", is a legal order written either in the hospital or on a legal form to respect the wishes of a patient to not undergo CPR or advanced cardiac life support (ACLS) if their heart were to stop or they were to stop breathing. The DNR request is usually made by the patient or health care power of attorney and allows the medical teams taking care of them to respect their wishes.

In 1991 Congress passed into law the Patient Self-Determination Act that mandated hospitals honor an individual's decision in their healthcare. Forty-nine states currently permit the next of kin to make medical decisions of incapacitated relatives, the exception being Missouri. Missouri has a Living Will Statute that requires two witnesses to any signed advanced directive that results in a DNR/DNI code status in the hospital.

In the U.S., CPR and advanced cardiac life support (ACLS) will not be performed if a valid written "DNR" order is present. Many US states do not recognize living wills or health care proxies in the prehospital setting and prehospital personnel in those areas may be required to initiate resuscitation measures unless a specific state sponsored form is appropriately filled out and cosigned by a physician.

State laws vary but typically emergency medical services personnel who are presented with a valid DNR form, signed by your doctor, or who identify a standard DNR bracelet on you, must comply with the DNR order.

References

Taylor, Shelley. Health Psychology. 8th. 1. New York City, New York: McGraw-Hill, 2012. 355-356. Print.

Dugdale, David. "Do not resuscitate ordes." Medline Plus. University of Washington school of medicine, 07 Apr 2012. Web. 23 Apr 2013. <http://www.nlm.nih.gov/medlineplus/ency/patientinstructions/000473.htm>. Palliative Care http://www.palliativedoctors.org/about/index.html

Hodgson, Harriet. "Anticipatory-grief symptoms what's the big deal?." American Hospice Foundation. American Hospice Foundation, n.d. Web. 23 Apr 2013. <http://www.americanhospice.org/grief/working-through-grief/80-anticipatory-grief-symptoms-whats-the-big-deal>.

Kübler-Ross, Elizabeth Family Limited Partnership; Kessler, David. On Grief and Grieving: Finding the meaning of grief through the five stages of loss. 2005

"What is Palliative Care?." Palliative Doctors Compassionate care at any stage of an illness. American Academy of Hospice and Palliative Medicine. Web. 23 Apr 2013. <http://www.palliativedoctors.org/about/index.html>.