ALS can be considered as a terminal disease if the patient is expected to develop a fatal outcome within a period of 6 months. During the initial stages of ALS, the lesion tends to be localized, but this would not help to determine the duration for which the patient would survive. During the end-stages of the disease the muscle denervation becomes extensive and spreads to various parts of the body. One of the important factors in determining the outcome and also the terminal nature of the disease is that the disease progresses at different rates in different patients.
Therefore, it is very important for the physician to actually determine the rate of progression of the disease in a particular patient. The ability to breathe and swallow would help establish the outcome during the end-stages of the disease. If the ability to breathe and swallow is retained, there are better chances that the patient would survive for longer periods. Being informed that your medical condition is terminal can be a very intense experience. Grief counseling is highly recommended both for the patient and his or her family.
A terminal illness gives everyone involved a period of time to come to terms with death, which can be very valuable. Terminal patients need the support and love of their friends and family members-giving comfort for the dying is one of the most important compassionate acts that anyone can perform. A terminal illness is an infection or disease that is considered ultimately fatal or incurable. Usually a patient is considered to have a terminal illness if he or she seems likely to die despite diagnosis and treatment, although it is possible for people with a terminal illness to live for years before succumbing to the medical condition.
Patients with a terminal illness are often placed in palliative care, which provides pain relief and other measures designed to make the end stages of terminal illness as comfortable as possible. Palliative care facilities do not usually engage in life saving measures such as resuscitating patients or emotionally and physically draining treatments like chemotherapy. The staff of palliative care facilities try to ensure that their patients have dignified, comfortable deaths without fear and pain.
Palliative Care End-of-life care or hospice care is a specialized form of medical care in which palliative or supportive treatment is provided to a dying patient. It is that phase when the physician may expect that the patient ‘s condition is fatal, and that death would be occurring within the next 6 months. It is required to reduce the sufferings from the symptoms and to make the person feel more comfortable as they make their final journey. This palliative care requires full support from the physicians, specialists (psychologists, cardiologists and oncologists, therapists, nurses, caregivers and volunteers).
Their services may also be required to offer physical, legal emotional, social, religious and spiritual assistance. It also includes the patients, family members, friends, neighbors, etc. Hospice is considered a holistic form of management or control of pain, symptoms and sufferings in a dying patient. Some of the common symptoms experienced include pain, discomfort, tiredness, cachexia (a rundown condition in cancer), depression, anxiety, nausea, vomiting dyspnea, weight loss, restlessness, constipation, incontinence, etc. From the patient’s point of view, pain management is the most important problem that needs to be resolved.
The patient can received care for pain relief at the home. Treatment methods that could extend the life of the patient should be stopped immediately, as these techniques only prolong the sufferings of the patient. However, the patient should be explained the situation in detail, have doubts cleared and should give consent by signing the necessary documents. Medicare usually covers hospice care; if the patient develops an unrelated condition, it should be treated individually. Older individuals suffering from a terminal illness may prefer to have a happy death rather than suffer.
Individuals may want to make decisions on if they would prefer to have End-of-life care at their homes, hospitals, or hospice. The elderly may want to have their families more involved in their treatment for fear that their suffering and symptoms may go unnoticed. Some terminally ill patients may be treated with highly invasive treatment that only worsens their agony. Pharmacological Issues Opioids are the foundation of end-of-life pain management. Pain, however, is a complex phenomenon involving physical, emotional, social, and spiritual aspects that must be addressed for total pain management.
The World Health Organization (WHO) ladder of pain management recommends various levels of pain treatment depending on pain severity.  Pain that is unrelieved by opioids can be treated with agents such as ketamine, parenteral lidocaine, nerve blocks, and, in some cases, palliative sedation. Depression, anxiety, and spiritual distress can all increase the perception of pain intensity, and addressing these components of pain can reduce the need for pain medication.   Because most antidepressants, including St. John’s Wort, take 2 to 6 weeks to take effect, treatment at end of life depends on length of life expected.
Other modalities, such as psychotherapy, energetic medicine, and mind-body modalities, can also have a beneficial effect. Complementary and Alternative Therapies A number of therapeutic interventions can be used along with medications to maximize therapeutic effect, in some cases reducing the dose of medication needed for effect and minimizing side effects is the best option. In addition to controlling symptoms, many complementary therapies can improve well-being by enhancing psychological and spiritual health as well as providing physical comfort.
In end-of-life care, unnecessary therapies are discontinued, and less invasive therapies can be increased to help with the needs and goals of the patient, resources available, and the patient’s response to them. Attentive listening and keen observation are essential in guiding therapeutic choices.
•Massage/Bodywork addresses the universal need for human touch which is a non-verbal expression of caring, good intention, and kindness. Skilled hands lovingly applied bring the body, mind, and spirit into rhythm. Essence Therapy embraces pure aromatherapy and flower essences to calm the spirit, relieve anxiety, and assist in balancing emotions and well being.
•Energy Work brings healing touch and gentle pressure to specific points. Working in a person’s energetic field soothes body, mind, and spirit.
•Vibration Therapy is comprised of music, tones, singing, humming, prayer bead recitation, and is a good medium to use when the patient is non-verbal or unresponsive.
•Visualization/Guided Imagery creates images that may produce calming responses as a person remembers or imagines pleasant states of being. Prayer/Meditation is a conversation or connection to an entity greater than self. The power of prayer imparts a sense of inner peace. Supportive Nursing Care End of life brings questions about life’s meaning and purpose with alternative ways to deal with the process. Spiritual and religious concerns often affect end-of-life decision-making.  While most patients might say they would want their nurse to ask about their spirituality and beliefs if they became gravely ill, some would not want.  Careful spiritual assessment can help the patient who desires them to obtain supportive spiritual.
Expressive therapies such as music, art, collage, movement, and writing can facilitate the exploration of spiritual issues also.  Use of a spiritual assessment tool can facilitate communication about life’s meaning, life closure, treatment goals, and help assess a patient’s strengths. It can also be used as a therapeutic tool to increase self-efficacy and well-being.      The nurse can learn how the patient copes with illness, what support systems are in place, and what beliefs the patient may have that could affect decision-making.
Supporting the dignity of the patient is essential in effective spiritual care. Nursing Diagnosis Pain, acute/chronic r/t chronic physical disability as evidenced by expressive behavior, sympathetic medicated responses, verbal report or guarded/protective behavior. Comprehensive pain evaluations will be performed to determine possible causes of pain and to access patient’s perception of pain. Also will encourage patient and family to express feelings and concerns about narcotic use.
Activity Intolerance/Fatigue r/t generalized weakness as evidenced by report of lack of energy, inability to maintain usual routines. Assessment of sleep patterns to recommend scheduling activities for periods when patient has most energy. Also, adjust activities as necessary. Grieving/Anxiety r/t anticipated loss of physiological well-being, perceived death as evidenced by denial of death, fear of process of dying, negative death images or unpleasant thought about death or dying. Facilitate development of a trusting relationship, assess patient for stage of grief and provide an open, nonjudgmental environment.
Family Coping, ineffective r/t prolonged disease progression as evidenced by inability to complete care giving task and or neglectful relationships with family members. Assess level of anxiety present in family. Establish rapport and acknowledge difficulty of the situation for the family. Anticipatory Grief r/t disease process as evidenced by expression of suffering in the potential loss, denial, guilt. Assess for fear of loss of wellness, assess for lack of resources reported or observed, assess for interest expressed to improve or maintain health behaviors.
Summary Dealing with the loss of a life and a loved one can be a difficult time for many. It is also difficult for friends and family to watch. There are ways to cope; the main idea is to allow them to enjoy their last moments on earth to the best of their ability. A very comprehensive program for those to manage their illness is hospice care. It includes palliative care to either prolong life and to give enough treatment for serious disease problems. Palliative care strives to manage all the symptoms patient have and provide them comfort.