Palliative Care at End of Life (9)

Physician Order for Life-Sustaining Treatment (POLST) or Medical Order for Life-Sustaining Treatment (MOLST)

A standardized physician order guided by the patient's medical condition and based upon personal preferences verbalized by patient or expressed in advance directive • Only for those whose illness may limit life to less than 12 months • Guides current treatments. Differs from advance directive, which guides future treatments • Physician completes form based on discussion with patient or authorized representative, or in review of advance directive. Signed by physician, patient, or patient representative • Printed on bright pink paper

Kubler-Ross Model of Grief: Acceptance

Anger, sadness, and mourning have tapered off. Accepts the reality of the loss

Physical Manifestations at End of Life: Taste and Smell

Decreased with disease progression

Kubler-Ross Model of Grief: Denial

Denies the loss has taken place and may withdraw. This response may last minutes to months.

Kubler-Ross Model of Grief: Depression

Feels numb, although anger and sadness may remain underneath

Advance Directive

General term used to describe documents that give instructions about future medical care and treatments and who should make the decisions in the event the person is unable to communicate • Should comply with guidelines established by state of residence

Saying Goodbyes

It is important for the patient and family to acknowledge their sadness, mutually forgive one another, and say goodbye. Encourage the dying person and family to verbalize their feelings of sadness, loss, forgiveness and to touch, hug, cry. Allow the patient and family privacy to express their feelings and comfort one another.

Living Will

Lay term used to describe any documents that give instructions about future medical care and treatments or the wish to be allowed to die without heroic or extraordinary measures should the patient be unable to communicate for self • Must identify specific treatments that a person wants or does not want at end of life

Kubler-Ross Model of Grief: Anger

May be angry at the person who inflicted the hurt (even after death) or at the world for letting it happen. May be angry with self for letting an event (e.g., car accident) take place, even if nothing could have stopped it.

Kubler-Ross Model of Grief: Bargaining

May make bargains with God, asking, "If I do this, will you take away the loss?"

Vision-Like Experiences

Patient may talk to persons who are not there or see places and objects not visible. Vision-like experiences assist the dying person in coming to terms with meaning in life and transition from it. Affirm the dying person's experience as a part of transition from this life.

Withdrawal

Patient near death may seem withdrawn from the physical environment, maintaining the ability to hear but unable to respond. Converse as though the patient were alert, using a soft voice and gentle touch.

Spiritual Needs

Patient or family may request spiritual support, such as the presence of a chaplain. Assess spiritual needs. Allow patient to express his or her spiritual needs. Encourage visit by appropriate spiritual care service provider, chaplain, or family member.

Medical Power of Attorney (MPOA)

Term used by some states to describe a document used for listing the person(s) to make health care decisions should a patient become unable to make informed decisions for self • May be the same as durable power of attorney for health care, health care proxy, or appointment of a health care agent or surrogate. Specifies measures to be used or withheld • Person appointed may be called a health care agent, surrogate, attorney-in-fact, or proxy.

Power of Attorney for Health Care (POAH)

Term used by some states to describe a document used for listing the person(s) to make health care decisions should a patient become unable to make informed decisions for self • May be the same as medical power of attorney • Indicates specific measures to be used or withheld

Unusual Communication

This may indicate that an unresolved issue is preventing the dying person from letting go. Patient may become restless and agitated or perform repetitive tasks (may also indicate terminal delirium). Encourage the family to talk with and reassure the dying person.

Physical Manifestations at End of Life: Hearing

Usually last sense to disappear

Directive to Physicians (DTP)

Written document specifying the patient's wish to be allowed to die without heroic or extraordinary measures • Indicates specific measures to be used or withheld

Allow Natural Death (AND)

Written order acknowledging that comfort measures only are being provided to patient. Used in many palliative care and hospice settings to indicate that patient wants to die naturally with dignity and comfort • In many settings may be used in conjunction with DNR terminology to ensure patient/family wishes for advance directives are followed (DNR/AND)

Do Not Resuscitate (DNR)

Written physician's order instructing HCPs not to attempt CPR. DNR order often requested by family • Must indicate any specific measures to be used or withheld. Must be signed by a physician to be valid

Delirium

• A state characterized by confusion, disorientation, restlessness, clouding of consciousness, incoherence, fear, anxiety, excitement, and often hallucinations • May be misidentified as depression, psychosis, anger, or anxiety • Use of opioids or corticosteroids as well as their withdrawal may cause delirium. • Underlying disease process may contribute to delirium. • Generally considered a reversible process • Perform a thorough assessment for reversible causes of delirium, including pain, constipation, and urinary retention. • Provide a room that is quiet, well lit, and familiar to reduce the effects of delirium. • Reorient the dying person to person, place, and time with each encounter. • Administer ordered benzodiazepines and sedatives as needed. • Stay physically close to frightened patient. Reassure in a calm, soft voice with touch and slow strokes of the skin. • Provide family with emotional support and encouragement in their efforts to cope with the behaviors associated with delirium.

Psychosocial Manifestations of End of Life

• Altered decision making • Anxiety about unfinished business • Decreased socialization • Fear of loneliness • Fear of meaninglessness of one's life • Fear of pain • Helplessness • Life review • Peacefulness • Restlessness • Saying goodbyes • Unusual communication • Vision-like experiences • Withdrawal

Physical Manifestations at End of Life: Sight

• Blurring of vision • Sinking and glazing of eyes • Blink reflex absent • Eyelids remain half-open

Bowel Patterns

• Constipation can be caused by immobility, use of opioid medications, depression, lack of fiber in the diet, and dehydration. • Diarrhea may occur as muscles relax or from a fecal impaction related to the use of opioids and immobility. • Assess bowel function. • Assess for and remove fecal impactions. • Encourage movement and physical activities as tolerated. • Encourage fiber in the diet if appropriate. • Encourage fluids if appropriate. • Use suppositories, stool softeners, laxatives, or enemas if ordered. • Assess for confusion, agitation, restlessness and pain, which may be signs of constipation.

Physical Manifestations at End of Life: Touch

• Decreased sensation • Decreased perception of pain and touch

Weakness and Fatigue

• Expected at the end of life • Metabolic demands related to disease process contribute to weakness and fatigue. • Assess the patient's tolerance for activities. • Time nursing interventions to conserve energy. • Help the patient identify and complete valued or desired activities. • Provide support as needed to maintain positions in bed or chair. • Provide frequent rest periods.

Physical Manifestations at End of Life: Urinary System

• Gradual decrease in urine output • Incontinence of urine • Inability to urinate

Physical Manifestations at End of Life: Musculoskeletal System

• Gradual loss of ability to move • Sagging of jaw resulting from loss of facial muscle tone • Difficulty speaking • Swallowing becoming more difficult • Difficulty maintaining body posture and alignment • Loss of gag reflex • Jerking seen in patients on high doses of opioids

Physical Manifestations at End of Life: Cardiovascular System

• Increased heart rate; later slowing and weakening of pulse • Irregular rhythm • Decreased BP • Delayed absorption of drugs administered IM or subcutaneously

Physical Manifestations at End of Life: Respiratory System

• Increased respiratory rate • Cheyne-Stokes respiration (pattern of respiration characterized by alternating periods of apnea and deep, rapid breathing) • Inability to cough or clear secretions resulting in grunting, gurgling, or noisy congested breathing (death rattle or terminal secretions) • Irregular breathing, gradually slowing down to terminal gasps (may be described as guppy breathing)

Anorexia, Nausea, and Vomiting

• May be caused by complications of disease process • Drugs contribute to nausea. • Constipation, impaction, and bowel obstruction can cause anorexia, nausea, and vomiting. • Assess the patient for complaints of nausea or vomiting. • Assess possible contributing causes of nausea or vomiting. • Have family provide the patient's favorite foods. • Discuss modifications to the drug regimen with the HCP. • Provide antiemetics before meals if ordered. • Offer and provide frequent meals with small portions of favorite foods. • Offer culturally appropriate foods. • Provide frequent mouth care, especially after vomiting. • Ensure uninterrupted mealtimes. • If ordered, administer medications (e.g., megestrol, corticosteroids) to increase appetite. • Teach family that appetite naturally decreases at end of life.

Anxiety/Restlessness

• May occur as death approaches and cerebral metabolism slows • May occur with tachypnea, dyspnea, sweating • Assess for previous anxiety disorder. • Assess for spiritual distress and/or concerns related to death as causes of restlessness and agitation. • Assess for urinary retention and stool impaction. • Do not restrain. • Use soothing music; slow, soft touch and voice. • Limit the number of persons at the bedside.

Dysphagia

• May occur because of extreme weakness and changes in level of consciousness • Difficulty swallowing • Aspiration of liquids and/or solids • Drooling/inability to swallow secretions • Identify the least invasive alternative routes of administration for drugs needed for symptom management. • Suction orally as needed. • Modify diet as tolerated/desired (soft, pureed, chopped meats). • Hand feed small meals. • Head elevated for meals and at least 30 minutes after • If necessary use alternative (rectal, buccal, transdermal) medication routes. • Discontinue nonessential medications. • Discuss risk of aspiration.

Dehydration

• May occur during the last days of life • Hunger and thirst are rare in the last days of life. • As the end of life approaches, patients tend to take in less food and fluid. • Assess mucous membranes frequently for dryness, which can lead to discomfort. • Maintain complete, regular oral care to provide for comfort and hydration of mucous membranes. • Encourage consumption of ice chips and sips of fluids or use moist cloths to provide moisture to the mouth. • Use moist cloths and swabs for unconscious patients to avoid aspiration. • Apply lubricant to the lips and oral mucous membranes as needed. • Do not force the patient to eat or drink. • Teach family that hunger and thirst are rare in the last days of life. • Reassure family that cessation of food and fluid intake is a natural part of the process of dying.

Urinary Incontinence

• May result from disease progression or changes in the level of consciousness. • As death becomes imminent, the perineal muscles relax. • Assess urinary function. • Use absorbent pads for urinary incontinence. • Follow appropriate nursing protocol for the consideration and use of indwelling or external catheters. • Follow appropriate nursing management to prevent skin irritations and breakdown from urinary incontinence.

Myoclonus

• Mild to severe jerking or twitching sometimes associated with use of high dose of opioids. • Patient may complain of involuntary twitching of extremities. • Assess for initial onset, duration, and any discomfort or distress experienced by patient. • If myoclonus is distressing or becoming more severe, discuss possible drug therapy modifications with the HCP. • Changes in opioid medication may alleviate or decrease myoclonus.

Physical Manifestations at End of Life: Integumentary System

• Mottling on hands, feet, arms, and legs • Cold, clammy skin • Cyanosis of nose, nail beds, knees • "Waxlike" skin when very near death

Pain

• Pain may be a major symptom associated with terminal illness and the one most feared. • Pain can be acute or chronic. • Bone pain can be caused by metastases, fractures, arthritis, immobility. • Physical and emotional stressors can aggravate pain. • Assess pain thoroughly and regularly to determine the quality, intensity, location, and contributing and alleviating factors. • Minimize possible irritants such as skin irritations from wetness, heat or cold, and pressure. • Administer medications around the clock in a timely manner and on a regular basis to provide constant relief rather than waiting until the pain is unbearable and then trying to relieve it. • Provide complementary and alternative therapies such as guided imagery, massage, and relaxation techniques as needed (see Chapter 6). • Evaluate effectiveness of pain relief measures frequently to ensure that the patient is on a correct, adequate drug regimen. • Do not delay or deny pain relief measures to a terminally ill patient.

Goals of Palliative Care

• Regard dying as a normal process. • Provide relief from symptoms, including pain. • Affirm life and neither hasten nor postpone death. • Support holistic patient care and enhance quality of life. • Offer support to patients to live as actively as possible until death. • Offer support to the family during the patient's illness and in their own bereavement.

Skin Breakdown

• Skin integrity is difficult to maintain at the end of life. • Immobility, urinary and bowel incontinence, dry skin, nutritional deficits, anemia, friction, and shearing forces lead to a high risk for skin breakdown. • Disease and other processes may impair skin integrity. • As death approaches, circulation to the extremities decreases and they become cool, mottled, and cyanotic. • Assess skin for signs of breakdown. • Implement protocols to prevent skin breakdown by controlling drainage and odor and keeping the skin and any wound areas clean. • Perform wound assessments as needed. • Follow appropriate nursing management protocol for dressing wounds. • Follow appropriate nursing management protocol for a patient who is immobile, but consider realistic outcomes of skin integrity vs. maintenance of comfort. • Follow appropriate nursing management to prevent skin irritations and breakdown from urinary and bowel incontinence. • Use blankets to cover for warmth. Never apply heat. • Prevent the effects of shearing forces.

Physical Manifestations at End of Life: Gastrointestinal System

• Slowing or cessation of GI function (may be enhanced by pain-relieving drugs) • Accumulation of gas • Distention and nausea • Loss of sphincter control, producing incontinence • Bowel movement before imminent death or at time of death

Dyspnea

• Subjective symptom • Accompanied by fear of suffocation and anxiety • Underlying disease process can exacerbate dyspnea. • Coughing and expectorating secretions become difficult. • Assess respiratory status regularly. • Elevate the head and/or position patient on side to improve chest expansion. • Use a fan or air conditioner to facilitate movement of cool air. • Teach and encourage the use of pursed-lip breathing. • Administer supplemental oxygen as ordered. • Suction PRN to remove accumulation of mucus from the airways. Suction cautiously in the terminal phase. • Administer expectorant as ordered.

Candidiasis

• White, cottage-cheese-like oral plaques • Fungal overgrowth in the mouth due to chemotherapy and/or immunosuppression • If ordered, administer oral antifungal nystatin. • Clean dentures and other dental appliances to prevent reinfection. • Provide oral hygiene and use soft toothbrush.