END OF LIFE CARE

Introduction: Palliative care is patient- and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. It addresses physical, intellectual, emotional, social, and spiritual needs while facilitating patient autonomy, access to information, and choice of care. This type of comprehensive assessment and management of symptoms is essential to ensuring comfort and quality of life for seriously ill patients and their families. Palliative care is provided in many settings and forms. Hospice care is a vehicle that provides palliative care to patients at home, in nursing homes, or in specialized in-patient facilities. Under current federal regulations governing hospice reimbursement, to qualify for hospice care, patients typically must have a life expectancy of six months or less and agree to forgo curative treatments. Regardless of setting, palliative care is particularly effective in alleviating symptoms associated with advanced illness. Pain is one of the most common and widely feared symptoms in patients near the end of life and is frequently under-assessed and poorly managed. Populations with an increased risk of underassessment include older adults, children, and cognitively impaired and unconscious patients. Unrelieved pain and other physical symptoms can also prompt or heighten psychosocial and spiritual distress and suffering and have been linked with increased patient desire for hastening death. The reasons for poor pain and symptom management are multifactorial, but some of the primary contributing factors include lack of appropriate education among physicians, patients, and their families; fragmented or nonexistent systems for symptom assessment and management; lack of standardization and audits of institutional pain and symptom management practices; and the fact that, historically, pain management has been a low priority for the medical community. DEFINITION: •

End of life care is the term currently used for issued related to death and dying, as well as services provided to address these issues. Institute of Medicine: defines end of life care as the period of time during which an individual copes with declining health from a terminal illness or from the frailities associated with advanced age even if death is not clearly imminent. GOALS OF END OF LIFE CARE

1. 2. 3. 4.

To promote quality of life. To affirms the life of individual. Treats the person. Supports the family

PHYSICAL MANIFESTATIONS OF APPROACHING DEATH SYSTEM MANIFESTATIONS
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1. SENSORY SYSTEM

2. INTEGUMENTARY SYSTEM

• • • • • •

Usually last sense to disappear Decreased sensation Decreased perception of pain & touch Blurring of vision Blink reflex absent Eyelids remain half open.

3.RESPIRATORY SYSTEM

• • • • • •

Mottling on hands, feet, arms and legs Cold, clammy skin Cyanosis on nose, nail beds and knees Wax-like skin when very near to death Increases respiratory rate Cheyne-stroke respiration (pattern of respiration characterized by alternating periods of apnea and deep, rapid breathing) Inability to cough, clear secretions resulting in grunting, gurgling or noisy congested breathing. Irregular breathing gradually slow down to terminal gaps(guppy breathing)

4.URINARY SYSTEM

• 5.GASTROINTESTINAL SYSTEM • • • •

Gradual decrease in urinary output. Incontinence of urine. Unable to urinate. Slowing of GI tract and possible cessation of function(may be enhanced by pain-relieving medications) Accumulation of gases. Distention & nauses Loss of spinchter control may produce incontinence. Bowel movement may occur before imminent death or at time of death.

6.MUSCULOSKELETAL SYSTEM

• • •

7. CARDIOVASCULAR SYSTEM

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• • • • • • •

Gradual loss of ability to move. Sagging of jaw resulting from loss of facial muscle tone. Difficult speaking. Swallowing can become more difficult. Difficulty maintaining body posture & alignment. Loss of gag reflex. Jerking seen in patients on large amounts of opioids. Increased heart rate, weakening of pulse. Irregular rhythm Decrease in B.P Delayed absorption of drugs administered intramuscularly or subcutaneously. later slowing &

• • •

PSYCHOLOGICAL MANIFESTATIONS OF APPROACHING DEATH • • • • • • • • • • • • • • Altered decision making. Anxiety about unfinished business. Withdrawal Decreased socialization. Fear of loneliness Fear of meaningless of one’s life. Fear of pain Helplessness Life review Peacefulness Restlessness Saying goodbye Unusual communication Vision like experiences.

Dying Person’s bill of rights: • • • I have the rights to be treated as a living human being until I die. I have the rights to maintain a sense of hopelessness, however changing its focus may be. I have the rights to be cared to be cared for by those who can maintain a sense of hopelessness, however changing this may be.
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• • • • • • • • • • • •

I have the rights to express my feelings and emotions and my approaching death in my own way. I have right to expect continuing medical and nursing attention, even though “cure” goals must be changed to “comfort” goals. I have the right to participate in decisions concerning my care. I have right not to die alone. I have right to be free from pain. I have right to have my questions answered honestly. I have right to not to be deceived. I have right to have help from and for my family in accepting my death. I have right to die in peace and dignity. I have right to retain my individuality and may not be judged by my decisions, which may be contrary to the beliefs of others. I have right to discuss and enlarge my religious and spiritual experiences, regardless of what they mean to others. I have right to be cared for by caring, sensitive, knowledgeable people who will attempt to understand my needs and will be able to gain some satisfaction in helping me face my death.

A LEGAL MANDATE FOR PALLIATIVE CARE Euthanasia may be classified as active or passive or alternatively as voluntary, non-voluntary and involuntary. Active euthanasia involves painlessly putting individuals to death for merciful reasons, as when a doctor administers a lethal dose of medication to a patient. Passive euthanasia involves not doing something to prevent death, as when doctors refrain from using devices necessary to keep alive a terminally ill patient or a patient in a persistent vegetative state. In voluntary euthanasia, a person asks for death (by either active or passive euthanasia). Nonvoluntary euthanasia refers to ending the life of a person who is not mentally competent, such as a comatose patient, to make an informed request for death. Apart from these there is involuntary euthanasia where a person is killed against his express will. In India there is no specific law concerning euthanasia, though it is much desirable. The need of the same arises when a person is terminally ill and not capable of cure. The sufferings of an ill person need not be prolonged by forcefully keeping him alive with all the pains and sufferings. That is definitely a violation of Article 21 of the Constitution of India which provides a right to dignified life In juxtaposition, the words Right to Die evoke an exactly opposite sentiment. How can it be a right if you are using it to give up your rights. The above right has been used as a guise or a camouflage to include various concepts that are opposed to preservation of life. Euthanasia, Physician Assisted Suicide (PAS), Suicide, though conceptually different, are species of the same genre. The Indian Constitution says that the right to die is not a fundamental right under Article 21. Whether the right to die is included in Article 21 of Constitution came for consideration for the first time before the Bombay High Court in The State of Maharashtra v. M.S.Dubal . The Court held that the right to life includes the right to die. Consequently, the Court struck down Section 309 of IPC, which provides punishment for the attempt to commit suicide as unconstitutional. The judges felt that the desire to die is not unnatural, but merely abnormal and uncommon.
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The Court held that the Right to Life is a natural right, embodied in Article 21. However, suicide is an unnatural termination or extinction of life and, therefore, incompatible and inconsistent with the concept of Right to Life. It was held that this concept was unrelated to the Principle of Sanctity of Life or the Right to Live with Dignity. SETTINGS FOR END OF LIFE CARE: PALLIATIVE CARE PROGRAMS AND HOSPICE PALLIATIVE CARE: Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care: • • • • • • • • • provides relief from pain and other distressing symptoms; affirms life and regards dying as a normal process; intends neither to hasten or postpone death; integrates the psychological and spiritual aspects of patient care; offers a support system to help patients live as actively as possible until death; offers a support system to help the family cope during the patients illness and in their own bereavement; uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated; will enhance quality of life, and may also positively influence the course of illness; is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.

HOSPICE CARE: The root of the word hospice is hospes, meaning “host”. Historically, hospice refereed to a shelter or a way station for weary travelers on a pilgrimage. In the last followed Kubler Ross’s groundbreaking work, the concept of hospice care as an alternative to depersonalized death in institutions began as a grassroots movement. Hospice care began in response to “noticeable gaps… (1) Between treating the disease and treating the person. (2) Between the technological research and psychological support. (3) Between the general denial of the fact of death in our society and the acceptance of death by those who face it.” (Wentzel, 1981) According to Saunders, who founded the world renowned St. Christopher’s Hospice in London, the principles underlying hospice are as follows: • Death must be accepted. • The patient’s total care is best managed by an interdisciplinary team whose members communicate regularly with each other. • Pain and other symptoms of terminal illness must be managed.
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• • • •

The patient and family should be viewed as a single unit of care. Home care of dying is necessary. Bereavement care must be provided to family members. Research and education should be ongoing.

KUBLER ROSS MODEL FOR DYING CLIENT The Kubler-Ross model, commonly known as the five stages of grief, was first introduced by Elisabeth Kübler-Ross It describes, in five discrete stages, a process by which people deal with grief and tragedy, especially when diagnosed with a terminal illness or catastrophic loss. Stages of Kubler Ross model
1. Denial – "I feel fine."; "This can't be happening, not to me."

Denial is usually only a temporary defense for the individual. This feeling is generally replaced with heightened awareness of situations and individuals that will be left behind after death.
2. Anger – "Why me? It's not fair!"; "How can this happen to me?"; "Who is to blame?"

Once in the second stage, the individual recognizes that denial cannot continue. Because of anger, the person is very difficult to care for due to misplaced feelings of rage and envy. Any individual that symbolizes life or energy is subject to projected resentment and jealousy.
3. Bargaining – "Just let me live to see my children graduate."; "I'll do anything for a few

more years."; "I will give my life savings if..." The third stage involves the hope that the individual can somehow postpone or delay death. Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Psychologically, the individual is saying, "I understand I will die, but if I could just have more time..."
4. Depression – "I'm so sad, why bother with anything?"; "I'm going to die... What's the

point?"; "I miss my loved one, why go on?" During the fourth stage, the dying person begins to understand the certainty of death. Because of this, the individual may become silent, refuse visitors and spend much of the time crying and grieving. This process allows the dying person to disconnect oneself from things of love and affection. It is not recommended to attempt to cheer up an individual who is in this stage. It is an important time for grieving that must be processed.

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5. Acceptance – "It's going to be okay."; "I can't fight it, I may as well prepare for it."

This final stage comes with peace and understanding of the death that is approaching. Generally, the person in the fifth stage will want to be left alone. Additionally, feelings and physical pain may be non-existent. This stage has also been described as the end of the dying struggle.

NURSING CARE OF TERMINALLY ILL PATIENTS Many patients suffer unnecessarily when they do not receive adequate attention for the symptoms accompanying serious illness. Careful evaluation of the patient should include not only the physical problems but also the psychosocial and spiritual dimensions of the patient’s and families experience of serious illness. • PSYCHOSOCIAL ISSUES: Nurses are responsible for educating patients about possibilities and probabilities inherent in their life with the illness and for supporting them as they conduct life review, value clarification, treatment decision making and end of life closure. The only way to do this effectively is to try to appreciate and understand the illness from the patient’s perspectives. Kubler Ross’s work revealed that patients in the final stage of life can and will talk openly about their experiences, exposing as a myth the view that patients will be harmed by honest discussion with their care givers about death. Despite the continued reluctance of health care providers to engage in open discussion about end-of-life issues, studies have confirmed that patients want information about their illness and end-of-life choices are not harmed by open discussion about death. At the same time nurses need to be both culturally aware and sensitive in their approaches to communicate with patients and families about death. Attitudes toward open disclosure about terminal illness vary widely among different cultures, and direct communication to the patient about such matters may be viewed as harmful. To provide effective patient and family centered care at the end of life, nurses must be willing to set aside their assumptions so that they can discover what type and amount of disclosure is most meaningful to each patient and family within their unique belief systems.

COMMUNICATION: Glaser and Strauss(1965) observed that unwillingness in our culture to talk about the process of dying is tied to our discomfort with the notion of a
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particular deaths- those of our patients and our own rather than talking about death in the abstract that is more comfortable. To develop a level of comfort and expertise in communicating with seriously and terminally ill clients and their families, nurses and other clinicians need to consider their own experiences with and values concerning illness and death. Reflection, reading, talking with family members, friends, colleagues can assist the nurse to examine beliefs about death and dying. Talking with individuals from differing cultural background can assist the nurse to view personally held beliefs through a different lens and can help to sensitize the nurse to death-related practices in other cultures. • SKILLS FOR COMMUNICATING WITH THE SERIOUSLY ILL Nurse need to develop skills and comfort in assessing patients and families responses to seriously illness and choices throughout the continuum of care. Patients and families need ongoing assistance: telling a patient with something once is not teaching, and hearing the patients words is not the same as active listening. Throughout the course of illness, patients and their families will encounter complicated treatment decisions about bad news about disease progression, and recurring emotional responses. In addition to the time of initial diagnosis, lack of response to the treatment course, decisions to continue or withdraw particular interventions and decisions about hospice care are examples of critical points on the treatment continuum that demand patience, empathy and honesty from the nurse. Although communication with each patient and family should be tailored to their level of understanding and values concerning disclosure, general guidelines for the nurse include the following (Addington, 1991): ➢ Deliver and interpret the technical information necessary for making decisions without hiding behind medical terminology. ➢ Realize that the best time for the patient to talk may be when it is least convenient for you. ➢ Being fully present during any opportunity for communication is often the most helpful form of communication. ➢ Allow the patient and family to set the agenda regarding the depth of the conversation. SPIRITUAL CARE Spirituality contains features of religiosity, but the two concepts are not interchangeable. Spirituality involves the “search for meaning and purpose in life and relatedness to a transcendent dimension”. For most people, contemplating their own death raises many issues such as the meaning of existence, the purpose of suffering, and the existence of an afterlife. The spiritual assessment is a key component of comprehensive nursing assessment for terminally ill patients and their families. Although the nursing assessment should include religious affiliation, spiritual assessment is conceptually much broader than religion and thus is relevant regardless of the patient’s expression of religious preferences or affiliation. In addition to assessment of the role of religious faith and practices, important
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religious rituals, and connections to a religious community, the nurse should further explore: ➢ The harmony or discord between the patient’s and family’s beliefs. ➢ Other sources of meaning, hope, and comfort. ➢ The presence or absence of a sense of peace of mind and purpose in life. ➢ Spirituality or religiously based beliefs about illness, medical treatment , care of sick. Maugans (1996) created the useful mnemonic “SPIRIT” to assist health care professionals to include spiritual assessment in their practice: ➢ Spiritual belief system ➢ Personal Spirituality ➢ Integration and involvement with others in a Spiritual community. ➢ Ritualized practices and restrictions ➢ Implications for medical care ➢ Terminal events planning • MANAGING PHYSIOLOGIC RESPONSES TO ILLNESS Patients approaching the end of life experience many of the same symptoms, regardless of their underlying disease process. Symptoms in terminal illness can be caused by the disease either directly (e.g. dyspnea due to chronic obstructive lung disease) or indirectly (e.g. nausea and vomiting related to pressure in the gastric area), by treatment for the disease or by coexisting disorder that is unrelated to the disease. The goals of symptom management at the end-of life care are to completely relieve the symptoms when possible, or to decrease the symptom to a level that the patient can tolerate when it cannot be completely relieved. Medical interventions may be aimed at treating the underlying causes of symptoms. Pharmacologic and nonpharmacologic methods for the symptom management may be used in combination with medical interventions to modify the physiologic causes of symptoms. (A) PAIN Pain and suffering are among the most feared consequences of cancer (Roth and Breitbart, 1996). Pain is a significant symptom for many cancer patients throughout their treatment and disease course; it results both from the disease and the modalities used to treat it. Numerous studies have indicated that patients with advanced illness, particularly cancer, experience considerable pain. It is estimated that as many of 70% of patients with advanced cancer experience severe pain. The impact of poorly managed pain on patients psychological, emotional, social and financial well being has attracted considerable research interest, but practice has been slow to change. Patients who have an establish regimen of analgesics should continue to receive those medications as they approach the end of life. Inability to communicate pain should not be equated with the absence of pain. While most pain can be managed effectively using the oral route, as the end of life nears patient may be less able to swallow oral

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medications due to somnolence or nausea. Patients who have been receiving opioids should continue to receive equianalgesics doses via the rectal or sublingual routes. The nurse should teach the family about continuation of comfort measures as the patient approaches the end of life, how to administer analgesics via alternate routes, and how to assess for pain when the patient cannot verbally report pain intensity. Because the analgesics administered orally or rectally are short acting, typically scheduled as frequently as every 3-4 hours around the clock, there is always a strong possibility that the patient approaching the end of if will die in close proximity to the time of analgesic administration. (B) DYSPNEA Dyspnea is an uncomfortable awareness of breathing that is common in patients approaching the end of life. Dyspnea is a highly subjective symptom that often is not associated with visible signs of distress such as tachypnea, diaphoresis or cyanosis. Patients with primary lung tumors, lung metastases, pleural effusion and restrictive lung disease may experience significant dyspnea. The treatment of dyspnea varies depending on the patient’s general physical condition and imminence of death. Nursing assessment and interventions The patient may interpret increasing dyspnea as a sign that death is approaching. For some patients, sensations of breathlessness may invoke frightening images of drowning or suffocation and the resulting cycle of fear and anxiety may create even greater sensations of breathlessness. Therefore, the nurse should conduct a careful assessment of the psychosocial and spiritual components of the symptoms. Physical parameters include:  Symptom intensity, distress and interference with activities(scale 0 to 10)  Auscultation of lung sounds.  Assessment of fluid balance  Measurement of dependent edema(circumference of lower extremities)  Measurement of abdominal girth  Temperature  Skin color  Sputum quantity and character  Cough Nursing management of dyspnea at the end of life is directed towards administering medical treatment for the underlying pathology, monitoring the patient’s response to treatment, assisting the patient and family to manage anxiety, altering the perception of the symptoms and conserving energy. Pharmaclogic interventions is aimed at modifying lung physiology and improving performance as well as altering the perception of the symptom. Bronchodilators and corticosteroids are examples of medications used to treat underlying obstructive pathology, therebt improving overall lung function.Although dyspnea in terminal illness is typically not associated with diminished blood oxygen saturation, low-flow oxygen often provides psychological comfort to the patient and the family, particularly in the home settings.

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• NUTRITION AND HYDRATION AT THE END OF LIFE Anorexia and cachexia are common problems in the seriously ill. The profound changes in the patient’s appearance and his or her concomitant lack of interest in the socially important rituals of mealtime are particularly disturbing to families.The approach to the problem varies depending on the patient’s stage of illness, level of disability associated with illness and desire. The anorexia-cachexia syndrome is characterized by the disturbance in carbohyfrate, protein, and fat metabolism, endocrimne dysfunction and anemia. Anorexia may be related to or exacerbated by situational variables (e.g. the ability to have meals with the family versus eating alone in the sick room), progression of the disease, treatment for the disease or psychological distress. USE OF PHARMACOLOGIC AGENTS TO STIMULATE APPETITE IN TERMINALLY ILL A number of pharmacologic agents are commonly used to stimulate appetite in anorectic patients. Commonly used medications for appetite stimulation include dexamethasone, cyproheptadine, megestrol acetate and dronabinol. Dexamethsone initially increases appetite and may provide short term weight gain in some patients. However, therapy needs to be discontinued in the patients with a longer life expectancy, as after 3 to 4 weeks corticosteroids interfare with the synthesis of muscle protein. Cyproheptadine may be used when corticosteroids are contraindicated, such as when the patient is diabetic. It promotes mild appetite increase but no appreciably weight gain. Megestrol acetate produces temporary weight gain of primary fatty tissue, with little effect on protein balance. ARTIFICIAL NUTRITION AND HYDRATION IN TERMINAL ILNESS As the patient near the end of life, their bodies nutritional needs change, their desire for food and fluid may diminsh and they no longer be able to use, eliminate, or store nutrients and fluids adequately. Eating, feeding, and sharing meals are important social activities in families and communities and food preparation and enjoyment are linked to happy memories, strong emotions and hopes for survival. As the patient approaches the end of life, families and health care providers should offer the patient what he or she desires and can most easily tolerate. Nurses should instruct the familyhow to separate feeding from caring by demonstrating love, sharing and caring by being with the loved ones in other ways.Preoccupation with appetite, feeding and weight loss diverts energy and time that the patient and family could use in other meaningful activities. The following are tips to promote nutrition for terminally ill patient: ➢ Offer small portions of favorite foods. ➢ Do not be overly concerned about a “balanced diet”. ➢ Cool foods may be better tolerated than hot foods. ➢ Offer cheese, eggs, peanut butter, mild fish or chicken. ➢ Add milkshakes, instant breakfast drinks or other liquid supplements. ➢ Add dry milk powder to milkshakes and cream soups to increase proteins and calorie content. ➢ Place nutritious foods at the bedside. ➢ Schedule meals when family members can be presentto provide company and stimulation. ➢ Assist the patient to maintain a schedule of oral care. Rinse the mouth after each meal or snacks.
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➢ Offer ice chips made fro frozen fruit juices. ➢ Allow the patient to refuse foods and fluids. • DELIRIUM Many patients may remain alert, arousal and able to communicate until very close to death. Others may sleep for long intervals and awaken only intermittently, with eventually somnolence until death. Delirium refers to concurrent disturbances in level of consciousness, psychomotor behavior, memory, thinking, attention, sleep wake cycle. In some patients, a period of agitated delirium may precede death, sometimes causing families to be hopeful that the suddenly active patients may be getting better. Nursing interevntions are aimed at identifying the underlying cause of delirium, acknowledging the family’s distress over its occurrence, reassuring them about what is normal, teaching the familt how to interact with and ensure safety for the patient with delirium and monitoring the effects of medications used to treat severe agitation, paranoia or fear. Confusion may mask the patient’s unmet spiritual needs and feras about dying. Spiritual intervention, music therapy, gentle massage and therapeutic touch may provide some relief. Reducing environmental stimuli, avoiding harsh lightening or very dim lightening, the presence of familiar faces, and gentle reorientation and reassurance are helpful.

BIBLIOGRAPHY: ➢ Smeltzer et al., Textbook of Medical Surgical Nursing, 10th Edition, Lippincott Williams &
Wilkins publishers, Pp 370-386

➢ En .wikipedia.Org ➢ http://www.legalserviceindia.com/articles/yasia.htmo
➢ http://www.mywhatever.com/cifwriter/library/70/4948.html

➢ http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1298030/

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