Palliative Care at End of Life

Palliative Care at End of Life 150 150 Tony Guo

Palliative Care at End of Life


Palliative Care

  • Care or treatment focusing on reducing the severity of symptoms
    • Begins during curative or restorative health care
    • Extends into end-of-life care
    • Bereavement care follows death
  • Originated in the 1960s as care and emotional support for patient, family, and significant others during the terminal phases of serious life-limiting diseases
  • Need for this care is increasing
    • Demographic changes
    • Longer life expectancies
      • Improved health care technology
    • Increased health care utilization
      • Older adults living with multiple chronic illnesses
  • Improves quality of life
  • Decreases costs of health care
  • Alleviates the burden of care
  • Palliative care is indicated when a diagnosis of a life-limiting illness is made and involves
    • Inter-professional collaboration
    • Ongoing communication 
    • Care in multiple settings


Hospice Care

  • Concept of care that provides compassion, concern, and support for persons in the last phases of a terminal disease
    • Live fully
    • Live comfortably
    • Die pain-free and with dignity
  • Palliative care allows for curative and palliative treatment simultaneously
  • Hospice care is provided when curative care is forgone 
    • Requires physician certification that life expectancy is 6 months or less
  • Available 24 hours/day, 7 days/week
  • Provided by medically supervised professional teams and volunteers
  • Hospice nurses are pivotal
    • Pain control, symptom management, spiritual assessment, assessment and management of family needs
  • Potential barriers to care in vulnerable populations
    • Veterans
    • Homeless
    • Impoverished
    • Disabled
    • Institutionalized
  • Admission has two criteria: 
    • Patient must desire services
    • Patient must be eligible for services



  • Occurs when all vital organs and body systems cease to function
  • Irreversible cessation of cardiovascular, respiratory, and brain function

Brain Death

  • Irreversible loss of all brain functions including the brainstem
  • Occurs when the cerebral cortex stops functioning or is destroyed
  • Exact definition of death can be controversial
  • Legal and medical standards require that all brain function must cease for brain death to be pronounced and life support to be disconnected. 
  • Diagnosis of brain death is of particular importance when organ donation is an option. 
  • In some states and under specific circumstances, registered nurses are legally permitted to pronounce death. Policies and procedures may vary from state to state and among health care institutions.

End of Life

  • Refers to the final phase of a patient’s illness, when death is imminent 
  • Period of time from diagnosis of a terminal illness to actual death varies considerably, depending on the patient’s diagnosis and extent of disease
  • Goals
    • Provide comfort and supportive care during dying process
    • Improve quality of remaining life
    • Help ensure a dignified death
    • Provide emotional support to family


Physical Manifestations at End of Life

  • Metabolism is decreased
  • Body gradually slows down until all function ends
  • Respiration generally ceases first
    • Heart stops beating within a few minutes


  • Respiratory System
    • Cheyne-Stokes respiration (pattern of breathing characterized by alternating periods of apnea and deep, rapid breathing.)
    • Inability to cough or clear secretions 
      • Grunting, gurgling, or noisy congested breathing (“death rattle”)
    • Irregular breathing that gradually slows down to terminal gasps


  • Sensory System- Hearing and Touch
    • Hearing is usually last sense to disappear
    • Decreased sensation
    • Decreased perception of pain and touch


  • Sensory System – Taste, Smell, and Sight
    • Blurring of vision
    • Blink reflex absent
    • Patient appears to stare
    • Eyelids remain half-open
    • Decreased sense of taste and smell


  • Integumentary System
    • Mottling on hands, feet, arms, and legs
    • Cold, clammy skin
    • Cyanosis of nose, nail beds, knees
    • “Wax-like” skin when very near death


  • Urinary System
    • Gradual decrease in urinary output
    • Incontinent of urine
    • Unable to urinate


  • Gastrointestinal System
    • Slowing of digestive tract and possible cessation of function 
    • Accumulation of gas
    • Distention and nausea 
    • Loss of sphincter control
    • Bowel movement may occur before imminent death or at the time of death


  • Musculoskeletal System
    • Gradual loss of ability to move
      • Trouble holding body posture and alignment
    • Loss of facial muscle tone
      • Sagging of jaw 
      • Difficulty speaking
      • Loss of gag reflex
      • Swallowing can become more difficult


  • Cardiovascular System
    • Increased heart rate; Later slowing and weakening of pulse 
    • Irregular rhythm
    • Decreased BP
    • Delayed absorption of IM or SQ drugs


Psychosocial Manifestations at End of Life

  • Altered decision making
  • Bereavement 
  • Anxiety and fear
  • Withdrawal
  • Life review
  • Grief is experienced and mourning occurs
  • Peacefulness
  • Grief is the normal process of reacting to loss
  • Saying goodbyes
  • Dynamic process
  • The period of time following the death of a loved one
  • Includes both psychologic and physiologic responses


Models of Grief

  • Kubler-Ross — Five Stages of Grief
Stage What Person May Say Characteristics
Denial No, not me. It cannot be true. Denies the loss has taken place and may withdraw. This response may last minutes to months.
Anger Why me? 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.
Bargaining Yes me, but … May make bargains with God, asking, “If I do this, will you take away the loss?”
Depression Yes me, and I am sad. Feels numb, although anger and sadness may remain underneath
Acceptance Yes me, but it is okay. Anger, sadness, and mourning have tapered off. Accepts the reality of the loss


The Grief Wheel

  1. Shock
  • Numbness, denial, disbelief, hysteria, inability to think straight
  1. Protest
  • Strong, powerful feelings of anger, guilt, sadness, fear, yearning, and searching
  1. Disorganization
  • Overwhelming bleakness, despair, apathy, anxiety, and confusion
  1. Reorganization
  • Gradual return to normal functioning, but feelings are different


Grief Support

  • Bereavement programs assist survivors transition to life without the deceased person
  • Should be integrated into the plan of care before as well as after the death


Spiritual Needs

  • At the end of life, many patients question their beliefs about a higher power, their own journey through life, religion, and an afterlife
    • Spirituality is associated with decreased despair at EOL
    • Spiritual distress may occur
  • Many turn to religion because it may provide order to the world even in the presence of physical decline, social losses, suffering, and impending death. 
  • Religion may offer an existential meaning that offers a sense of peace and recognition of one’s place in the broader cosmic context


Culturally Competent Care: End of Life

  • Cultural beliefs affect 
    • Understanding of and reaction to death or loss 
    • Treatment decisions
  • Cultural differences in relation to death and dying varies
  • Rituals associated with dying are part of all cultures
    • Ensure adequate information for those who don’t speak English
    • Pay attention to nonverbal cues
  • Make nursing assessment of beliefs and preferences on an individual basis
  • Use open-ended questions to guide planning and evaluation of care


Legal and ethical Issues

  • Patients and families struggle with many decisions during the terminal illness and dying experience
  • Organ and tissue donations
    • Any body part or the entire body may be donated
      • Decided by a person before death
      • With family permission after death
  • Advance Care Planning and Advance Directives
    • Advance care planning is a process that involves having patients think through, talk about, and document their values and goals for treatment
    • Advance directives are the written documents of those wishes and the designated spokesperson
  • Resuscitation
    • A common health care practice
      • Patients and families have the right to decide whether CPR will be used
      • Physician’s orders should specify 
  • Full Code
  • Chemical Code
  • No Code – DNR or AND
  • Mechanical ventilation
  • Tube feeding placement
  • Be informed
    • Know patient’s wishes
    • Be aware of legal issues
    • Understand documentation requirements
    • Put directives in the medical record
      • Place notices in the nursing care plan and on the patient’s record
  • Euthanasia
    • Deliberate act of hastening death
    • The ANA statement on active euthanasia states that the nurse should not participate in active euthanasia
    • Not the same as palliative sedation
      • Use of medications to intentionally produce sedation 
  • Relief of intractable symptoms and distress with imminent death
  • Intent is to relieve pain and suffering


Role of the Nurse

  • Relieve suffering
  • Clarify misunderstanding about the use of pain medications
  • Addiction is not a concern when providing comfort for the terminally ill patient

End of Life: Nursing Management

  • Nurses spend more time with patients and families
  • Respect, dignity, and comfort are important for patient and family
  • Psychosocial and physical needs

Nursing Assessment

  • If patient is alert
    • Brief review of body systems to detect signs and symptoms
    • Assess for discomfort, pain, nausea, or dyspnea
    • At least every 8 hours in the inpatient setting
  • Assess coping abilities of patient and family
  • Monitor for system failure as death approaches
  • Attention to subtle physical changes requires vigilance
  • In the last hours of life
    • Limit to comfort measures
    • More peaceful for patient and family
    • Transition your efforts to emotional support for patient and family as death approaches

Nursing Diagnosis

  • Nursing diagnosis is related to the psychosocial, spiritual, and physical concerns that accompany EOL care


  • Involve patient and family
  • Advocate for 
    • Patient wishes
    • Comfort and safety
    • Care of emotional and physical needs
    • Where patient wants to die
  • The last hours or days of the patient experiencing brain death (e.g., from trauma) are frequently spent in the ICU. 


  • Psychosocial and physical care are interrelated
    • Ongoing information on disease, dying process, and care
    • Coping strategies
    • Denial and grieving may be barriers to learning
    • Manage Anxiety, Anger, Fear and Depression

Psychosocial Care 

  • Anxiety and depression
    • Encouragement, support, and teaching decrease some of the anxiety and depression. 
    • Management of anxiety and depression may include both medications and non-pharmacologic interventions such as relaxation strategies such as relaxation breathing, muscle relaxation, music, and imagery may be useful
  • Hopelessness and powerlessness
    • Encourage realistic hope within the limits of the situation. 
    • Allow the patient and family to deal with what is within their control, and help them to recognize what is beyond their control.
  • Fear of dyspnea
    • Sensation of air hunger results in anxiety for patient and family
    • Therapies depend on the cause and may include
      • Opioids
      • Bronchodilators
      • Oxygen
  • Fear of pain
    • Assure the patient and family that drugs will be given promptly when needed and that side effects of drugs can and will be managed
    • Reassessment of pain after medications are given is an important nursing action
  • Fear of loneliness and abandonment
    • Most terminally ill and dying people fear loneliness and do not want to be alone, therefore, are worried that their family member’s would not be able to cope with their imminent death and abandon them
  • Communication
    • Communication is essential 
    • Use empathy and active listening
      • Allow patients and families time to express their feelings and thoughts
      • Accept silence
    • Prepare family for unusual patient communication


  • Postmortem Care
    • After death is pronounced, the nurse prepares or delegates preparation of the body for immediate viewing by the family
  • Close patient’s eyes
  • Replace dentures
  • Wash and position body
  • Allow family privacy and as much time as they need with deceased person
  • Maintain respect for patient and family


Special Needs of Nurses

  • Caring for dying patients is challenging and rewarding while at the same time intense and emotionally charged
  • Recognize your values, attitudes and feelings about death
  • Be aware of what you can and cannot control. 
  • Recognizing personal feelings allows openness in exchanging feelings with the patient and family. 
  • Realizing that it is okay to cry with the patient or family during the end of life may be important for your well-being.


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