End of Life Care: NCLEX-RN
In this section of the NCLEX-RN examination, you will be expected to demonstrate your knowledge and skills of end of life care in order to:
- Assess the client’s ability to cope with end-of-life interventions
- Identify end of life needs of the client (e.g., financial concerns, fear, loss of control, role changes)
- Recognize the need for and provide psychosocial support to the family/caregiver
- Assist the client in resolution of end-of-life issues
- Provide end of life care and education to clients
Clients at the end of life and their family members have uniquely different needs than those who are experiencing other losses. These needs include physiological, psychological/emotional, social, spiritual and cultural needs.
Death, like all other life processes, varies among individuals and their family members but many of the phases of the perideath process are relatively predictable. Some people are at the end of life because of a relatively rapid but steady physiological decline and deterioration over a relatively short and brief period of time; other people may experience physiological declines and deterioration on a relatively gradual basis over a long period of time; and, still more may be at the end of life and death with a very sudden and abrupt cessation of life as the result of some traumatic and physiological event like an automobile accident or a myocardial infarction.
Many nurses, and other health care professionals, ponder about which type of death is the easiest and the less stressful for the family members. Is the perideath experience more stressful for the client and the family members when the death occurs in a relatively rapid period of time with a steady physiological decline and deterioration? Is the perideath experience more stressful for the client and the family members when the death occurs over a relatively short and brief period of time or when death with a very sudden and abrupt cessation of life? The answer to these questions is quite simple. The answer is "it depends". It depends of the client, the significant others and their responses to the perideath experience. It depends on the client's and significant others' coping mechanisms, their level of support, their resources and social support systems, and whether or not the health care providers are able to meet the unique needs of the client and others during this process.
The perideath process consists of the first phase of the process which is the preparation for death, the second phase of the process which is the death itself, and the third phase of the process which the period of time immediately following the death.
The first phase of the perideath process is characterized with biological, psychological and social changes such as:
- Respiratory congestion
- Changes in respiratory patterns, including Cheyne-Stokes respirations
- A lack of orientation
- Body pallor and coolness
- Excessive sleeping
- A decreased desire for food and fluids
- Incontinence of the bowels and bladder
- Social withdrawal
- Vision like experiences
- Letting go
- Saying goodbyes to loved ones
Many clients at the end of life choose to have hospice and palliative care rather than rigorous curative and life sustaining treatments. According to the National Board for Certification of Hospice and Palliative Nurses, "Hospice and palliative care is the provision of care for the patient with life-limiting illness and their family with the emphasis on their physical, psychosocial, emotional and spiritual needs. This is accomplished in collaboration with an interdisciplinary team in a variety of settings which provide 24-hour nursing availability, pain and symptom management, and family support. The advanced practice registered nurse, registered nurse, pediatric registered nurse, licensed practical/vocational nurse, nursing assistant and administrator are integral to achieve a high standard of hospice and palliative care as members of this team."
End of life needs include physical, psychological, social and spiritual, cultural and religious needs. Nurses plan and provide interventions for these diverse needs and they also assess the client's and family member's ability to cope with these needs and the planned end of life interventions. As fully discussed and detailed earlier in this NCLEX-RN review, clients may have, prior to the end of life days and moments, made knowledgeable choices about the care and interventions that they want and do not want. They have also, hopefully, legally appointed a legal proxy or surrogate to make end of life decisions in the best interest of the client when intervention were not anticipated and included in the clients advance directive.
Some of the physical needs at the end of life are anorexia, dehydration, and fluid and electrolyte imbalances in addition to the signs and symptoms of the client's existing disease or disorder such as pain.
Many clients experience a loss of appetite, anorexia, and weight loss at the end of life. Intravenous fluids, total parenteral nutrition, and tube feedings can be used if the client chooses to have these treatments. When the client refuses these treatments either with an advance directive or a client refusal while the client is still competent to make this knowledgeable decision, nurses and family members have to accept and support the patient's choice even when they do not necessarily agree with it.
Simply stated, electrolytes and fluids are lost at the end of life as the result of a client's refusals of oral fluids, the specific disease or disorder that the client has, and the lack of fluid and electrolyte replacements. More information about fluids and electrolytes, and fluid and electrolyte imbalances is fully described in detail later in this NCLEX-RN review with the section entitled "Fluid and Electrolyte Imbalances".
Dehydration occurs when loses are greater than fluid gains. Fluid losses occur at the end of life as the result of symptoms such as vomiting and diarrhea as well as when the client refused to eat and drink. Again, artificial means of hydration and nutrition, such as intravenous fluid supplementation and tube feedings, may be given provided that the client elects to have these interventions.
The signs and symptoms of mild to moderate dehydration at the end of life include, among others, constipation, headache, thirst, dry skin, dry mouth and oral membranes, orthostatic hypotension, dizziness, and decreased urinary output. The signs and symptoms of severe dehydration at the end of life include, among others, hypotension, tachycardia, tachypnea, renal failure, oliguria, anuria, sunken eyes, poor skin turgor, confusion, , fluid and electrolyte imbalances, fever, delirium, confusion, and unconsciousness.
Some of the psychological needs of patients and family members at the end of life, as previously discussed in the section entitled "Assessing the Client's Reactions and Responses to Acute and Chronic Illnesses Including Mental Illness", include those relating to:
- A loss of hope and meaning
Other psychological needs include those related to confusion, sleep disturbances and fatigue, agitation and restlessness, self imposed social withdrawal, financial fears, fears of the unknown, fears relating to the client's independence, and stressful significant role changes.
Acute confusion signs and symptoms can be characterized with decreased level of cognition and other cognitive changes, restlessness, the lack of goal directed behavior, agitation and restlessness, hallucinations, and altered levels of conscious; and chronic confusion can manifest with impaired long term and short term memory, alterations in personality, altered responses to stimuli, impaired mental capacity, in addition to the other signs and symptoms of acute confusion.
Some confusion among those at the end of life can be corrected at times and it cannot be corrected at other times. For example, confusion that occurs secondary to delirium can be corrected with the treatment of its underlying physiological disorder, and confusion secondary to hypoglycemia can be corrected with the administration of glucose or sugar. When the confusion cannot be corrected, the nurse must insure the safety of the client and also emotionally support the client with confusion as well as support the family members and significant others.
Fatigue, simply defined, is excessive tiredness that is often accompanied with the person's inability to perform their daily activities. Patients affected with severe fatigue may not even be able to do even minimal physical and mental work. Some of the factors that can lead to fatigue include physical weakness, stress, depression, and sleep deprivation, all of which can commonly occur among patients who are at the end of life.
The signs and symptoms of fatigue at the end of life can lead to listlessness, a lack of motivation to do anything, lethargy, and decreased levels of awareness and the ability to mentally focus on things including the client's performing of their basic activities of daily living.
Fatigue can be assessed on a numerical scale from 0 to 10, like pain assessment scales, with a zero indicating that the client is not experiencing fatigue, 1 is minimal fatigue and 10 is the greatest possible level of fatigue. It can also be assessed using a standardized fatigue scale like the Multidimensional Fatigue Inventory, the HIV Related Fatigue Scale, the Profile of Mood State Short Form Fatigue Subscale, the Multidimensional Assessment of Fatigue or the Lee Fatigue Scale, the Brief Fatigue Inventory and the Dutch Fatigue Scale.
Some alternative treatment options for fatigue can include sleep promotion measures, stress and relaxation techniques, nutritional support, pain management, as indicated, and the correction of any biological causes that are leading to the fatigue, and psychosocial support.
Agitation and restlessness at the end of life can occur as the result of several causes including impaired kidney functioning, fluid and electrolyte imbalances, decreased hepatic functioning, and changes in terms of the acid base, or pH balance, of the client.
Clients who are affected with agitation and restlessness at the end of life can manifest symptoms such as hallucinations, psychotic episodes, constant complaints, significant changes in behavior, and foul language that is not characteristic for the patient.
If the underlying cause of the agitation and restlessness at the end of life can be identified and treated, it is typically done in order to prevent distress for the client and their significant others. When the agitation is significant and not able to be corrected with the treatment of an underlying cause, antianxiety and sedating medications are often used.
Self imposed social withdrawal also occurs among many clients who are going through the perideath process. At times, the client refuses to even have close family members as visitors and they also may have lost the need and the desire for intimacy. Nurses support all client choices in terms of the client's interpersonal and social interaction choices, and they also support the family members who may be experiencing distress as the result of the client's social isolation and choices.
Some of the commonly occurring fears at the end of life include financial fears, fears of the unknown, fears relating to the loss of control, fears relating to a loss of the patient's independence, and fears relating to one's control over their own actions. Nurses, therefore, should facilitate and encourage as much independence and control as possible for the client, as based on their unique needs and capabilities.
The client's roles and the ability of the person to perform their multiple roles also change at the end of life. The loss of role functioning, like the loss of independence, can lead to social isolation, depression, poor self-esteem and despair.
The goal of end of life care is to enable and facilitate the clients' and the family members' ability to effectively cope with the end of life and all the physical, psychological, social, and spiritual stressors associated with it.
Nurses and caregivers have highly important roles at the end of life. Caregivers, however, need the support of the nurse to overcome their own fears about the perideath process as they are giving and providing care to a loved one, and to also overcome the physical and the psychological burdens of care giving. Care of a loved one is very often a highly stressful and overwhelming experience among caregivers. Caregivers need the support of the nurse and community resources including self-help groups, respite care, other methods of social support as well as other interventions which are based on the caregiver's needs.
The evaluation of this care at the end of life is evaluated in terms of how well the clients and their family members demonstrate effective coping when they are not adversely affected with the physical, psychological, social, and spiritual stressors associated with it.
In addition to the many end of life needs and issues that were discussed above with the section entitled "Assessing the Client’s Ability to Cope with End-of-Life Interventions", patients at the end of life have several essential comfort and dignity needs that should be addressed with measures such as the provision of comfort and privacy, maintaining the patient in a clean and dry condition, good oral hygiene, proper turning and positioning, and the continued assessments by the nurse to determine the presence of any comfort needs that can be addressed with alternative and traditional methods such as massage, pain management medications, and the treatments for all other end of life symptoms.
Education relating to the end of life is provided by nurses to our affected clients, spouses, and family members and significant others; this education should include information about the following topics:
- The perideath process and the signs and symptoms of each stage of this process
- The management of the signs and symptoms at the end of life
- Advance directives
- Health care proxy
The benefits, disadvantages, risks and alternatives relating to treatments and interventions
- Abuse and Neglect
- Behavioral Interventions
- Chemical and Other Dependencies/Substance Abuse Disorders
- Coping Mechanisms
- Crisis Intervention
- Cultural Awareness and Influences on Health
- End of Life Care (Currently here)
- Family Dynamics
- Grief and Loss
- Mental Health Concepts
- Religious and Spiritual Influences on Health
- Sensory/Perceptual Alterations
- Stress Management
- Support Systems
- Therapeutic Communication
- The Therapeutic Environment