NCLEX: End-of-life care

End-of-life care: A look at end-of-life care

Focus topic: End-of-life care

Health care researchers and practitioners continue to improve medical technology and seek cures for practically every health condition known to humankind. However, terminal illnesses have no cure. Decades ago, patients with these illnesses had few options and commonly dealt with large amounts of pain. Today,hospice and palliative care programs are available to care forpatients as they near the end of their lives. Nurses can provide certain interventions during this time to maximize the quality of life for these patients and to prepare them for death.


End-of-life care: Hospice care

Focus topic: End-of-life care

Hospice is an organized program for delivering palliative care. Hospice focuses on support and care for people in the last phase of an incurable disease so that they may live as fully and comfortably as possible. In addition to providing personal support to these patients, hospice care includes support for the patient’s family while the patient is dying as well as support to the family during their bereavement.

Palliative provisions

Focus topic: End-of-life care

Palliative care strives to relieve suffering and to support the best possible quality of life for patients with advanced chronic and life-threatening illnesses.

Broadened horizons

Focus topic: End-of-life care

During the early days of the hospice movement in the United States, most of the care was provided to patients diagnosed with cancer. Today, hospice and palliative care services are available to patients with any serious illness, such as cardiovascular and pulmonary diseases,neurodegenerative disorders, stroke, cancer, human immunodeficiency virus (HIV) or acquired immunodeficiency syndrome (AIDS), and renal failure. Hospice and palliative care focus on treating pain, alleviating illness symptoms and stressors, providing support to the patient and his family for daily living, assisting the patient and his family with difficult medical decisions, and ensuring that the patient’s and family’s wishes for care are followed.

End-of-life care: Care settings

Focus topic: End-of-life care

Today, hospice programs serve patients in hospitals, residential facilities, prisons, and long-term care facilities as well as maintain the tradition of caring for patients in their homes. The services of the hospice team supplement the care at a time when facility staff, family members, and the patient are facing the increased and urgent needs associated with the dying process.

Location, location

Focus topic: End-of-life care

Hospice programs are offered by hospital systems and home health agencies. Palliative care programs are located in acute care hospitals and ambulatory outpatient settings. However, there’s a growing trend for hospice organizations to provide palliative care services earlier in the patient’s course of illness.

End-of-life care: End-of-life nursing care

Focus topic: End-of-life care

The nursing care given to end-of-life patients focuses on evaluation and management of symptoms and their causes. This includes providing assessments, responsive treatment modalities, and communications about therapy to your patient and his family.


Shifting nursing goals

Focus topic: End-of-life care

With end-of-life care, nursing goals for the patient shift from a curative intent to comfort and supportive management. For example, you might provide written instructions for all medications, encourage deep-breathing and relaxation techniques to decrease your patient’s and his family’s anxiety, and discuss with your patient who should provide the hands-on care.

Changing medical priorities

Focus topic: End-of-life care

Patients who are at the end of their life typically face different medical priorities than patients who are focused on returning to health. Some commonly encountered problems that take center stage include anorexia, anxiety, constipation, depression, and pain.

End-of-life care: Anorexia

Focus topic: End-of-life care

The loss of appetite resulting in the inability to eat, anorexia is due to the underlying disease and treatment modalities. Cachexia, or wasting syndrome, is commonly seen in cancer, HIV, and AIDS patients and may lead to anorexia in certain diseases.

Be on the lookout for…

Focus topic: End-of-life care

Assess your patient by asking about his eating patterns, mouth sores, taste changes, bowel patterns, pain level, sleep patterns,fatigue, anxiety, and ability to cook and feed himself. During your physical assessment, compare your patient’s current weight and body mass index to baseline levels and assess his oral cavity and throat for sores or lesions.

Digesting treatment options

Focus topic: End-of-life care

Common treatments include parenteral nutrition, appetite stimulants, and nutritional supplements. Effective appetite stimulants include dronabinol (Marinol), cyproheptadine, and megestrol acetate (Megace). Complementary therapies you may use to stimulate  your patient’s appetite include omega-3 fatty acids, ginger, and fennel. Additionally, encourage your patient to engage in such safe exercises as walking, passive range of motion, yoga, and stretching to help increase his appetite.

Quality, not quantity

Focus topic: End-of-life care

Remember, the nutritional goal for your patient is quality as opposed to quantity. If your patient enjoys two bites of food, then you have been successful.

Reassurance helps

Focus topic: End-of-life care

As a patient’s thirst and hunger decrease in response to the slowing of his body’s physiologic demands, family members commonly become particularly emotional and need reassurance. The chaplain and social worker may also lend support in dealing with the family’s emotions at this time.

End-of-life care: Anxiety

Focus topic: End-of-life care

The cause of anxiety may be disease-specific (as in cardiac, endocrine, pulmonary, neurologic, and hematologic illnesses) or due to nutritional deficits and drug side effects. Anger, guilt, and spiritual distress also are common causes of anxiety in end-of-life situations.

Talking treatment

Focus topic: End-of-life care

Ask your patient about past experiences with anxiety as well as his usual coping mechanisms, medication use, and support systems. Encouraging him to discuss his fears can help alleviate anxiety.

Relaxing the mind and body

Focus topic: End-of-life care

Your patient may benefit from taking an antianxiety medication, such as an anxiolytic, neuroleptic, non-benzodiazepine, or antihistamine. Or he may find listening to music, reading a book, or receiving a massage to be equally helpful.

End-of-life care: Constipation

Focus topic: End-of-life care

Constipation can be uncomfortable for your end-of-life patient and can lead to fecal impaction. The leading causes of constipation are dehydration, medications, depression, and ascites.

Ask about it

Question your patient about:
• nutrition and hydration status
• bowel frequency
• stool characteristics and amount
• abdominal discomfort
• flatulence
• nausea
• rectal fullness
• incomplete evacuation.

Use your senses

Focus topic: End-of-life care

Listen for bowel sounds in all four quadrants noting bowel characteristics, palpate the abdomen for tenderness or masses, and perform a digital rectal examination if your patient complains of incomplete evacuation or if you suspect he’s too weak to evacuate completely.

Manager in charge

Focus topic: End-of-life care

You can manage your patient’s constipation by increasing fluid intake and dietary fiber and encouraging physical activity to promote intestinal motility. Most palliative care programs employ a stepped bowel regimen. Generally, you should start out with a stimulant and, if this is ineffective, progress to a saline enema, then to an oral saline agent, and then to an osmotic laxative.

A stimulating conversation

Focus topic: End-of-life care

Bowel stimulants may cause uncomfortable cramping in patients with neuropathies or in those who are extremely weak. For these patients, recommend stool softeners and daily or every-other-day enemas.

Pan the bedpan

Focus topic: End-of-life care

Encourage your patient to use a toilet or bedside commode; these measures are much more effective than a bedpan.

End-of-life care: Cough

Focus topic: End-of-life care

Coughing is common in end-of-life patients with lung cancer, chronic obstructive pulmonary disease, and heart failure. It’s a protective mechanism that clears mucus, fluids, and inhaled foreign bodies from the trachea and bronchi.

Up and out

Assess your patient’s cough for:
• frequency
• duration
• aggravating factors
• alleviating factors
• sputum (color, amount, consistency).

Cancel that cough

Focus topic: End-of-life care

Antitussives are useful in managing coughing when the underlying cause of cough can’t be treated. Drugs such as benzonatate ( Tessalon) and dextromethorphan/guaifenesin (Robitussin-DM) are particularly effective.

Don’t be so naïve

Focus topic: End-of-life care

You may choose to give small doses of morphine every 3 to 4 hours to your opioid-naïve patients. For patients already taking morphine, increase the dose by 25%. If this regimen isn’t effective, try increasing the dose another 25%. Codeine and hydrocodone are other opioid choices.

Little bit o’ Lasix

Focus topic: End-of-life care

Furosemide (Lasix) decreases coughing in patients with heart failure or those who have excess fluid with pitting edema.

Other remedies and advice

Focus topic: End-of-life care

Try a warm elixir of honey and lemon, ventilation from an opened window, cool cloths to your patient’s face, and water to help loosen sputum. Your patient may need to be taught and reminded to cough effectively to prevent pooling of secretions in his lungs. Instruct family members not to smoke, cook, or allow overcrowding in your patient’s room.

End-of-life care: Delirium and terminal agitation

Focus topic: End-of-life care

Family members commonly feel helpless as their loved one displays agitation, confusion, and cognitive failure—symptoms of delirium and terminal agitation. This helplessness stems from the inability to communicate and comfort the patient. Reassure the patient’s family that this behavior isn’t uncommon.

Assess and intervene

Focus topic: End-of-life care

Assess your patient’s psychiatric history, medications, bowel habits, infection status, respiratory patterns, and urinary habits. Useful pharmacologic interventions for delirium and terminal agitation include haloperidol (Haldol) and chlorpromazine hydrochloride.
Other supportive interventions include:
• exploring your patient’s concerns regarding death, unfinished tasks, and spirituality
• monitoring patient safety
• keeping your patient in a familiar environment
• discussing your patient’s transition to approaching death with his family.

End-of-life care: Depression

Focus topic: End-of-life care

Many symptoms associated with terminal illnesses overlap the symptoms of depression. To assess your patient’s depression, ask him about changes in mood, sleep patterns, diet, and fatigue. To ascertain if your patient is at risk for suicide, inquire about feelings of hopelessness, worthlessness, and helplessness.

Diminishing depression

Focus topic: End-of-life care

The medications used to treat depression include tricyclics, selective serotonin reuptake inhibitors (SSRIs), serotonin/ norepinephrine reuptake inhibitors, norepinephrine/dopamine reuptake inhibitors, and other antidepressants. SSRIs have less sedative side effects than other antidepressants. For those who are severely depressed, psychostimulants such as methylphenidate(Ritalin) can enhance mood, increase appetite, and reduce fatigue. Psychostimulants administered with an antidepressant relieve depression more quickly. If anxiety is a part of your patient’s depressive disorder, the prescriber may also order a benzodiazepine.

Nonpharmacologic methods

The following therapies may alleviate some of the symptoms associated with depression:
• aromatherapy
• cognitive-behavioral therapy
• color therapy
• guided imagery
• music therapy
• pet therapy.

End-of-life care: Dyspnea

Focus topic: End-of-life care

Dyspnea is a subjective experience that includes difficulty breathing, an uncomfortable awareness of breathing, and shortness of breath. If your patient finds it difficult to speak or if answering questions exacerbates his problem, you may need to intervene first and ask questions later.

Assess and ask

Focus topic: End-of-life care

Physical assessment includes auscultating the lungs, monitoring oxygen saturation, and assessing your patient’s skin for oxygenation clues. Because anxiety almost always accompanies dyspnea, ask about the presence of anxiety before, during, and after dyspneic episodes.

Treat and take precautions

Focus topic: End-of-life care

Benzodiazepines, such as lorazepam (Ativan), are very effective in treating dyspnea. Dyspneic patients should be monitored frequently and should have a mechanism to call for help.

End-of-life care: Fatigue

Focus topic: End-of-life care

Fatigue, another subjective complaint, is caused by chronic
illnesses at the end of life.

Fatigue factors

Many factors contribute to fatigue, including:
• medications
• chemotherapy and radiation therapy
• stress
• depression
• infection
• inadequate nutrition and hydration.

Ask your patient about feelings of depression, causative factors, aggravating and alleviating factors, and fatigue patterns.

Fatigue busters

Effective pharmacologic interventions include psychostimulants, corticosteroids, antidepressants, and blood products. Other helpful measures include balancing activity and rest, prioritizing activities, exercising on a regular basis (if able), and participating in attention-restoring activities such as playing cards. Your patient and his family should be informed that fatigue levels increase with disease progression and impending death.

End-of-life care: Nausea and vomiting

Focus topic: End-of-life care

Between 40% and 70% of patients with advanced cancer have reported nausea and vomiting. The symptoms occur more often in women, those younger than age 65, and patients with either breast or stomach cancer.

Here comes that sinking feeling

Focus topic: End-of-life care

Assessment of your patient includes:
• asking her to identify aggravating and alleviating factors
• noting the volume, color, consistency, and contents of the vomit
• noting the status of bowel movements
• identifying any treatments used
• reviewing medications for potential emetogenic agents.

Emesis nemesis

Focus topic: End-of-life care

Although antiemetics and other types of drugs are the mainstay of therapy, nausea and vomiting can sometimes be controlled with nondrug therapies. Nonpharmacologic interventions include distraction, relaxation, acupuncture, dietary changes, and a celiac plexus block. Offering smaller meals consisting of foods your patient enjoys and sips of water, juice, tea, and ginger drinks may help as well.

End-of-life care: Pain

Focus topic: End-of-life care

Pain is a phenomenon with physical, affective, cognitive, behavioral, sociocultural, spiritual, and environmental components. It’s important to remember that pain exists when the patient says it exists.

Assessment arsenal

One of the most common ways to assess pain is by asking your patient to rate his pain intensity on a scale from 0 to 10, with “0” being no pain and “10” being the worst pain possible. Besides rating the pain, include the following descriptions of the pain in your assessment:
• location
• quality
• severity
• duration
• aggravating and alleviating factors
• impact on function and quality of life
• response to current and past treatment
• goals and expectations.

Clued to cues

Focus topic: End-of-life care

In addition to verbal communication, look for nonverbal messages communicated through gestures, posture, body movements, and facial expressions. During your physical examination, assess the patient’s respiratory rate, blood pressure, pulse, and skin color and condition.

Pain-free palliation

Focus topic: End-of-life care

Opioids and nonopioids alike are commonly administered to endof-life patients for pain management. Ask your patient about his pain medication preferences and past experiences, and use the analgesic ladder as a protocol for administering pain medication. Long-acting opioids or extended-release medications may be supplemented with short-acting medications for breakthrough pain. Nonopioid medications may be useful in neuropathic pain.

Don’t sidestep side effects

Focus topic: End-of-life care

When administering morphine, be sure to address the issue of side effects, which include (among others) constipation, respiratory depression, itching, and urinary retention. Teach the patient and his family about all pain medications, including their administration and potential side effects, and provide information about alternative pain control measures, such as massage, heat or cold applications, and distraction.


End-of-life care: Sleep disturbances

Focus topic: End-of-life care

Sleep disturbances in the end-of-life patient may be due to medication side effects, diet, depression, infection, or anxiety. Evaluate these possibilities, and discuss the problem with your patient.

Catching some zzzz’s

Pharmacologic options include benzodiazepine hypnotics, nonbenzodiazepine hypnotics, antidepressants, and pineal gland hormones. The choice of medication depends on the type of sleep problem your patient experiences. Home remedies include reducing noise, reducing caffeine intake late in the evening, drinking herbal tea or warm milk, and exploring your patient’s fears and anxieties that may be contributing to insomnia.

End-of-life care: Spiritual distress

Focus topic: End-of-life care

Many patients experience spiritual distress as death approaches. This distress may be due to regret of unfulfilled dreams, guilt over a misdeed, or fear of the dying process and death. Other feelings associated with spiritual distress include:
• abandonment
• anger

• betrayal
• despair
• sorrow
• remorse
• depression.

Feel out the family

Focus topic: End-of-life care

Family members may also experience spiritual distress during this time. Care of the patient and his family includes listening with empathy, understanding reactions of anger, discussing fears, and connecting with a chaplain or spiritual counselor. For some patients, it’s better to talk about meaning in their life, rather than speaking directly about spirituality or religion.

Patient teaching

During the final phase of a terminal illness, you’ll need to prepare the patient and his family for what to expect. This includes preparing them not only for the physical aspects of the patient’s deteriorating condition but also for the act of dying itself.

Physical needs

It’s important to teach the patient and his family about:
• oral care
• pressure ulcer prevention
• bathing
• contracture prevention.

Active and injury-free

Show the patient and his family how to perform range-of-motion exercises and the correct method of transferring a weak person from a bed to a chair or commode.

Impending death

The patient’s family may become anxious as the patient’s death approaches. It’s especially important to teach family members about the signs and symptoms of impending death and to reassure them that you are making the patient as comfortable as possible.


Permission to leave

It’s crucial to explain to the family that hearing is the last sense to leave a dying person. Patients can still hear what’s occurring in their surroundings even if they can’t communicate. Family members should be encouraged to speak to and touch their loved one during this time. Encourage them to reassure the patient by saying something like “It’s okay for you to go…We’ll take care of each other when you’re gone.” A statement like this may allow the patient to release his emotional anxieties and die a more peaceful death.

Social needs

The social needs of a patient and his family can be wide-ranging and warrant a detailed assessment. Focus on supporting the family as a unit as well as on individual members in their varied family roles. When possible, work with a social worker or chaplain to address the family’s needs.

Lengthy laundry list

Areas to concentrate on when conducting a social assessment include:
• medical equipment
• nutritional needs
• medications
• finances
• relationships
• other social networks.

Ethical and legal issues

If your patient can make decisions, the decisions he makes should guide his care and the family’s level of involvement in his care. If he can no longer make decisions and communicate them, you’ll need to rely on advance directives; the patient’s previously expressed wishes, values, and preferences; and appropriate surrogate decision makers.

Take the bull by the horns

When possible, urge the patient and his family to finalize their advance directives, wills, guardianship agreements, and other legal documents before the patient becomes unable to express his wishes.

Ethical to the end

If ethical concerns arise, handle them according to the principles of beneficence, self-determination, confidentiality, and informed consent. Keep patient and family care consistent with the nurse’s professional code of ethics. Include the hospice or palliative care team in such ethical issues as withholding nutrition and hydration, adopting “do not resuscitate” orders, and giving sedatives.


Bereavement counseling

Grieving over the loss of a loved one, in many cases, begins well before the actual death of the patient. And it isn’t limited to family members only. The patient also grieves over his impending death.

Getting a grip on grief

Bereavement counseling for the patient entails:
• maintaining open communication
• assisting the patient in accepting his death
• asking the patient how he wishes to die
• ensuring that the patient’s wishes are respected.
A social worker can facilitate patient and family meetings regarding financial concerns, legal issues, and care and support of family members after the patient’s death.

Grief response

It’s important to reassure your patient and his family that grieving is an individual process, without any time or emotional constraints. The patient and his family may experience the five stages of grief—denial, anger, bargaining, depression, and acceptance— or they may not experience these emotions at all, or at least not in the order presented.
Individuals typically manifest their grief physically, cognitively, emotionally, behaviorally, and spiritually. Remain supportive, and encourage all family members to have patience with and try to accept the emotions experienced.



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