Message From the President: End of Life Issues
This is the first segment of an educational series about End of Life issues. Recently, the Mosque Foundation held a symposium about this topic. The symposium was well attended and many community members asked for more education about this important subject. In the next few issues of Community Pulse, we will touch on issues surrounding the end of life from medical, ethical and Islamic perspectives. It is important that our families are aware of the issues pertaining to dying patients, terminal illness, resuscitation and advanced directive so they can plan well for that time, if and when a loved one ends up in the Intensive Care Unit. Knowledge about the options available for a dying patient and planning in advance reduces the stress of dealing with terminal illness, facilitates better care and assures a more dignified process at the end of life for the patients and their families.
The Uniform Rights of the Terminally Ill Act (1985, revised 1989), has been recommended as a Uniform Act in the United States, and subsequently has been passed by many states. The law allows a person to declare a living will specifying that, if the situation arises, he or she does not wish to be kept alive through life support if terminally ill or in a coma. The patient may also obtain a health care power of attorney. This power of attorney appoints an agent to make medical decisions for the patient in case the patient becomes incompetent.
Many people make use of this act because they do not wish to endure any pain or suffering if weakened by a fatal disease. They want to "die with dignity," so that family members will not have to go through the emotional pain of watching their loved one sleep through many years of life with no response to stimuli.
Terminal illness is a medical term popularized in the 20th century to describe an active and malignant disease that cannot be cured or adequately treated and that is reasonably expected to result in the death of the patient. 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 end the life of the sufferer.
A patient who has such an illness may be referred to as a terminal patient or terminally ill. 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, 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. By definition, there is no cure or adequate treatment for terminal illnesses.
However, some kinds of medical treatments may be appropriate anyway.
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
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, massage and acupuncture may relieve some symptoms and other causes of suffering.
Patients, healthcare workers, and recently bereaved family members often describe a good death in terms of effective choices made in a few areas:
- 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 or may not follow recognizable stages of grief. 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 meticulously arranging their financial and legal affairs or planning their funerals.