End of life care is provided when vital organs and body systems shut down irreversibly and death becomes imminent. It starts when a patient is diagnosed with a terminal condition that requires symptom management and emotional support. Depending on the prognosis, end-of-life care may only last a few days or months to several years.
Near-death signs and symptoms include:
- Sensory: blurred vision, diminished sense of taste and smell, reduced pain and touch perception, and blank stares due to the loss of the blink reflex. Note: The final sense thought to be lost is hearing.
- Respiratory: rapid or slow, shallow, and irregular breathing, noisy and wet sounding (“death rattle”), Cheyne-Stokes respiration (alternating periods of apnea and deep, rapid breathing).
- Circulatory: reduced blood pressure and heart rate, skin cool-to-touch, pale, mottled, cyanotic extremities, and waxy-appearing skin.
- Genitourinary: decreased urine output and urinary incontinence.
- Gastrointestinal: diminished motility and peristalsis, constipation, accumulation of gas, abdominal distention, and incontinence.
- Musculoskeletal: decreased strength and ability to move, speak and swallow, and loss of the gag reflex.
- Integumentary: Kennedy terminal ulcer (a dark sore that appears rapidly as part of the dying process; often mistaken as deep tissue injury).
Nursing Process
End-of-life care focuses on the patient’s and family’s psychosocial and physical needs. Nursing care for end of life aims to provide support and comfort during the dying process, help ensure a dignified death, improve the quality of the patient’s life, and provide emotional support for the family.
Nurses must acknowledge that a patient’s well-being involves psychological, interpersonal, and spiritual components. Nurses assist in decision-making about palliative, end-of-life care, and advance directives alongside the patients and their families. End-of-life care requires collaboration with physicians, social workers, volunteers, chaplains, and more.
Nursing Assessment
End of life care is a critical aspect of nursing that focuses on providing comfort, dignity, and support to patients and their families during the final stages of life. Nurses play a pivotal role in assessing and managing the complex needs of patients facing terminal illnesses, ensuring they receive compassionate and holistic care.
Comprehensive Patient History
Gathering a thorough patient history is essential to understand the patient’s medical background, current symptoms, and personal wishes. This includes:
- Medical History: Reviewing the patient’s medical records to identify previous treatments, ongoing conditions, and prognosis.
- Symptom Assessment: Identifying the type, intensity, and frequency of symptoms such as pain, fatigue, respiratory distress, and gastrointestinal issues.
- Psychosocial Assessment: Understanding the patient’s emotional, social, and spiritual needs, including family dynamics and support systems.
- Patient Preferences: Discussing the patient’s goals, values, and preferences for end of life care, including advance directives and resuscitation wishes.
Physical Examination
Conducting a thorough physical examination helps nurses to pinpoint specific symptoms and tailor interventions accordingly. Key aspects to assess include:
- Pain Levels: Evaluating pain intensity using appropriate pain scales and identifying pain sources.
- Respiratory Status: Monitoring for signs of respiratory distress, such as dyspnea, coughing, and cyanosis.
- Neurological Function: Assessing for changes in consciousness, cognitive function, and sensory perception.
- Skin Integrity: Checking for pressure ulcers, rashes, and other skin conditions.
Nursing Interventions
Nurses are indispensable in providing end of life care that is compassionate, respectful, and tailored to the unique needs of each patient. Through effective symptom management, psychosocial support, and coordinated care, nurses ensure that patients and their families experience dignity, comfort, and peace during the final stages of life.
Symptom Management
One of the primary goals of end of life care is to alleviate symptoms and enhance comfort. Interventions may include:
- Pain Management: Administering analgesics, including opioids, and using non-pharmacological methods such as massage and relaxation techniques.
- Respiratory Support: Providing oxygen therapy, nebulizers, or positioning techniques to ease breathing.
- Gastrointestinal Care: Managing symptoms such as nausea, vomiting, constipation, and anorexia through medications and dietary adjustments.
- Hydration and Nutrition: Ensuring adequate fluid intake and nutrition, respecting the patient’s preferences and condition.
Psychosocial Support
Providing emotional and spiritual support is crucial for patients and their families during this challenging time. Nurses can offer:
- Emotional Support: Offering a listening ear, empathy, and reassurance to patients and their loved ones.
- Spiritual Care: Facilitating access to spiritual care providers, respecting the patient’s beliefs and values.
- Family Support: Educating and involving family members in care decisions, offering counseling, and providing respite care.
Care Coordination
Nurses act as coordinators of care, ensuring seamless communication and collaboration among the healthcare team. Key aspects include:
- Referral to Specialists: Facilitating referrals to palliative care specialists, social workers, or chaplains.
- Care Planning: Developing and updating individualized care plans based on the patient’s evolving needs and preferences.
- Advocacy: Advocating for the patient’s wishes and ensuring their voice is heard in all care decisions.
Nursing Care Plans
Once the nurse identifies nursing diagnoses for end-of-life related care, nursing care plans help prioritize assessments and interventions for both short and long-term goals of care. In the following section, you will find nursing care plan examples for end-of-life related care.
Compromised Family Coping
Compromised family coping related to end-of-life care can be caused by stress and anxiety due to terminal disease progression, depression, role changes, and inadequate knowledge about the condition.
Nursing Diagnosis: Compromised Family Coping
Related to:
- Impending death
- Sudden change in health status
- Prolonged condition
- Disease progression
- Stress
- Anxiety
- Depression
- Role changes
- Family disorganization
- Inadequate knowledge of end-of-life care
- Misunderstanding about concepts of end-of-life care
As evidenced by:
- Complaints about the patient’s response to treatment
- Limitation of communication between patient and support system
- Inquiries about the patient’s current health condition
- Withdrawal of patient’s family/caregiver
- Uncooperative behaviors of the caregiver
- Neglectful attitude towards the patient by the family or caregiver
- Complicated/anticipatory grieving of patient and family
Expected outcomes:
- Patient and family will verbalize understanding of end-of-life care and acceptance of the patient’s condition.
- Patient and family will demonstrate effective coping strategies during the end-of-life phase.
- Patient and family will cooperate in care and decision-making related to the patient’s condition.
- Patient and family will express thoughts and feelings honestly.
Assessment:
1. Note the length of illness and patient’s demographics.
A sudden terminal illness is likely to result in complicated coping. A patient who is young in age or is a primary caregiver for the family may cause coping difficulties among family members.
2. Determine the patient’s and family’s stress, anxiety, and depression.
During the end-of-life phase, the patient and family may have conflicting feelings that may result in being uncooperative and unresponsive. Inquire about feelings of anxiety and depression.
3. Assess cultural norms.
Cultural factors may play a significant role in end-of-life care, expectations, and goals of care.
4. Determine the patient’s and family’s knowledge about advance directives.
Having advance directives in place will ease the burden on decision-making for the patient’s end-of-life care.
Interventions:
1. Establish rapport with the patient and family members.
Established rapport between the nurse, patient, and family will lead to increased trust and a healthier dying process.
2. Evaluate the responses of the patient to end-of-life care.
During this phase, end-of-life care can affect the patient’s and family’s coping ability. Not all family members may be accepting of the process. Ensure the patient is experiencing pain and symptom relief to their desired level.
3. Involve the patient and family in planning care.
Proactive end-of-life care planning can reduce feelings of regret, depression, and helplessness. It will also help the patient and family accept the situation and plan out care appropriately.
4. Ensure that the patient and family understand advance directives.
Instead of starting with a healthcare provider, discussions about patient preferences frequently take place within families. The nurse can inquire about the patient’s advance directive or expressed wishes for medical care.
5. Anticipate referral to social work or spiritual services.
Social workers are essential to ease the burden of financial care at the end of life. They also offer bereavement services for 13 months after death. Chaplains or other religious leaders may be involved to ease the transition at the end of life.
Death Anxiety
Death anxiety related to end-of-life can be caused by a patient’s loss of physiologic well-being, change in health status, and impending death.
Nursing Diagnosis: Death Anxiety
Related to:
- Anticipation of death
- Pain
- Stress about impending death
- Anxiety about impending death
- Depression
- Spiritual distress
- Low self-esteem
- Uncertainty of disease prognosis
- Life after death
- Leaving loved ones behind
As evidenced by:
- Verbalizations about death and its effects on family
- Depression
- Loneliness
- Fear of change in health status
- Expressions of fear of death and separation from loved ones
- Fear of the unknown
- Powerlessness
- Reports of negative thoughts related to death and dying
Expected outcomes:
- Patient and family will verbalize understanding of the dying process and its impact.
- Patient and family will express acceptance of impending death.
- Patient will move through the stages of grief.
Assessment:
1. Determine the patient’s role in the family.
If the patient is the primary caregiver to others or the financial provider, their anxiety about leaving their family behind may be heightened.
2. Determine the patient’s experience with death.
Determine if the patient experienced traumatic or frequent exposure to death. This can affect how they view death and dying.
3. Identify the patient’s physical signs and symptoms.
These signs and symptoms signal difficulty in coping and fear of the future. Symptoms of anxiety, depression, and panic can be treated.
- Dyspnea (difficulty of breathing)
- Insomnia (difficulty sleeping)
- Palpitations
- Nausea
- Trembling
- Irritability
- Restlessness
- Despair
- Panic
4. Assess the patient’s physical condition.
If the patient’s terminal illness has caused physical deterioration or a loss of independence, this may further exacerbate their fear and feelings of despair.
Interventions:
1. Set realistic goals with the patient and family.
Setting realistic goals with the patient and family can reduce death anxiety during the end-of-life phase.
2. Assist the patient and family in decision-making.
Letting the patient and family decide on end-of-life care practices offers a sense of control over the situation.
3. Explain signs and symptoms of impending death.
Death and dying can be very stressful for the patient and family members. People often want to talk about what to expect. Remain open and honest about normal and expected signs and symptoms of the dying process.
4. Reminisce on life experiences.
This can be a good time for family and friends to reminisce on memories and for the patient to discuss accomplishments.
5. Involve mental, spiritual, and social support.
Feelings of guilt, grief, and spiritual distress need to be discussed and healed in order for the patient and family to move through the stages of grief and accept dying.
6. Anticipate hospice care.
When patients no longer have curative alternatives or decide against further treatment, hospice care offers symptom management. The goal of hospice care is for patients to experience quality of life without pain and to die with dignity.
Powerlessness
Powerlessness related to end-of-life can be caused by a patient’s inability to control feelings and cope with situations pertaining to imminent death.
Nursing Diagnosis: Powerlessness
Related to:
- Death anxiety
- Change in health status
- Pain
- Low self-esteem
- Ineffective coping strategies
- Inadequate social support
- Insufficient knowledge about end-of-life care
- Decreased or diminished motivation to improve one’s situation
As evidenced by:
- Depression
- Anxiety
- Passivity
- Doubt about role performance
- Expression of regret and shame
- Verbalization of a lack of purpose in life
- Reports inadequate sense of control
- Fatigue
- Loss of independence
- Does not participate in decision-making
Expected outcomes:
- Patient and family will verbalize acceptance of the situation.
- Patient and family will express control of decision-making.
- Patient and family will participate in end-of-life care.
Assessment:
1. Assess factors affecting the patient’s and family’s feelings of powerlessness.
In challenging circumstances such as end-of-life, powerlessness can be an overpowering sense of helplessness, which makes the patient and family prone to death anxiety, stress, and depression.
2. Ask about the patient’s and family’s understanding of end-of-life.
Understanding end-of-life care helps plan appropriate interventions. This allows for an opportunity to dispel myths and misconceptions.
3. Note the availability of resources or support persons.
A lack of support is a contributor to powerlessness. If the patient does not have family or a social support system, the nurse and healthcare team can offer this.
Interventions:
1. Do not argue or provide false hope.
The client who feels powerless will not believe in arguments of logic. Do not use empty phrases like, “It will all work out.” Sometimes listening and holding their hand is all that can be done.
2. Help the patient and family recognize what they can control.
In the dying process, there is often little that can be controlled but helping the patient recognize they are still in charge of their healthcare decisions, pain control, and alertness offers some sense of power.
3. Encourage the patient to participate in routine activities.
Simple self-care activities and participation in hobbies will help the patient feel more in control of their situation.
4. Advocate for the patient’s and family’s wishes.
Collaborate with the interdisciplinary team regarding the patient’s preferences and wishes. The patient’s advance directives will help the healthcare team provide care tailored to the patient.
Nursing Diagnoses and Rationales for End-of-Life Care
1. Pain Management
Rationale: Pain is a common and significant symptom for patients at the end of life. Effective pain management is crucial for maintaining quality of life. Regular pain assessments, utilizing both pharmacological and non-pharmacological interventions, and adjusting pain management strategies based on the patient’s feedback can help alleviate suffering. Collaboration with a multidisciplinary team, including palliative care specialists, is essential for optimal pain control.
2. Risk for Impaired Skin Integrity
Rationale: Patients at the end of life often have limited mobility, which increases the risk of pressure ulcers. Regular repositioning, use of pressure-relieving devices, and meticulous skin care can prevent skin breakdown. Monitoring for signs of pressure ulcers and implementing early interventions are essential in maintaining skin integrity.
3. Risk for Infection
Rationale: Compromised immune function in patients at the end of life makes them more susceptible to infections. Strict adherence to infection control practices, such as hand hygiene and sterile techniques, can reduce the risk of infection. Monitoring for signs of infection and providing prompt treatment are crucial in managing the patient’s health.
4. Risk for Fluid Volume Imbalance
Rationale: Patients at the end of life may experience fluid imbalances due to decreased oral intake and changes in organ function. Monitoring fluid intake and output, assessing for signs of dehydration or fluid overload, and providing appropriate interventions can maintain fluid balance. Collaborating with the healthcare team to adjust fluid management based on the patient’s condition is essential.
5. Risk for Ineffective Breathing Pattern
Rationale: Respiratory complications are common in end of life care due to the underlying disease process. Assessing respiratory function, monitoring oxygen saturation, and providing respiratory support as needed can ensure adequate oxygenation. Teaching the patient and family about recognizing signs of respiratory distress and when to seek help is also important.
6. Anxiety and Fear
Rationale: Patients at the end of life, as well as their families, often experience anxiety and fear about the dying process. Providing emotional support, clear communication, and education about what to expect can help alleviate these feelings. Implementing relaxation techniques, offering spiritual support, and ensuring the presence of loved ones can also contribute to reducing anxiety and fear.
7. Grief and Bereavement
Rationale: Anticipatory grief is common among patients and families facing the end of life. Providing support through counseling, bereavement services, and facilitating open discussions about feelings can help individuals cope with their grief. Encouraging expression of emotions and offering resources for ongoing support are essential aspects of end of life care.
8. Nutrition and Hydration
Rationale: Maintaining adequate nutrition and hydration can be challenging at the end of life due to decreased appetite and difficulty swallowing. Offering small, frequent meals, providing favorite foods, and ensuring a comfortable eating environment can encourage intake. Using complementary feeding methods, such as enteral nutrition when appropriate, can also support the patient’s nutritional needs.
9. Spiritual Distress
Rationale: Addressing spiritual needs is a vital component of holistic end of life care. Patients may experience spiritual distress as they seek meaning and purpose in their remaining time. Providing access to spiritual care providers, respecting diverse beliefs, and incorporating spiritual practices can help alleviate this distress.
10. Family Support
Rationale: The well-being of family members is integral to the overall care of the patient. Providing education about the dying process, involving them in care decisions, and offering respite care can support families during this challenging time. Encouraging open communication and providing resources for emotional and practical support are critical for family members.
REFERENCES
- ANA Center for Ethics and Human Rights. (2016). Nurses’ Roles and Responsibilities in Providing Care and Support at the End of Life. American Nurses Association. https://www.nursingworld.org/~4af078/globalassets/docs/ana/ethics/endoflife-positionstatement.pdf
- Burns, S. (2014). AACN essentials of critical care nursing (3rd ed.). McGraw-Hill Education / Medical.
- Help guide wp. (2018, December 20). Late stage and end-of-life care. HelpGuide.org. https://www.helpguide.org/articles/end-of-life/late-stage-and-end-of-life-care.htm
- National Health Service UK. (2018, May 29). End of life care. nhs.uk. https://www.nhs.uk/conditions/end-of-life-care/
- National Institute on Aging USA. (2022, November 17). Providing care and comfort at the end of life. National Institute on Aging. https://www.nia.nih.gov/health/providing-comfort-end-life
- WebMD. (2016, August 4). What to expect when your loved one is dying. https://www.webmd.com/palliative-care/journeys-end-active-dying
Stories are the threads that bind us; through them, we understand each other, grow, and heal.
JOHN NOORD
Connect with “Nurses Lab Editorial Team”
I hope you found this information helpful. Do you have any questions or comments? Kindly write in comments section. Subscribe the Blog with your email so you can stay updated on upcoming events and the latest articles.
