The Last Hours, Days Susan Leonard M.D. Elizabeth Whiteman M.D.

Goals and Objectives Understand the dying process Learn ways to effectively communicate with family and loved ones during this time and prepare for end of life Understand the symptoms and management of symptoms during the terminal stages Understand the bereavement process

Dying Process Dying process is difficult Loss of functional ability, independence, control, dignity May have increased need for care, goals of care and treatment change

Dying Process

Preparing for the Last Hours Are there existing medical conditions that need attention in the final hours? Be prepared for symptoms that may arise (dyspnea, agitated delirium, congestion), and anticipate medication needs Be prepared for concerns of family

Preparing for the Last Hours Advantages of preparation Reduces fear and anxiety Keeps family informed and prepared for impending loss Instills more confidence in care Increase sense of value during process Shifts the roles and responsibilities, reduces dependence on healthcare providers

Effective Communication Set the stage Anticipate questions/concerns Start where the family is Determine preferences Use clear language Check for understanding

Effective Communication Define the care team ▫Who is in charge, contacts, ancillary ▫Clarify health care proxy, surrogate decision- maker Develop a care plan ▫Review advance directives and goals of care ▫Care plan that includes activities individual may wish to complete before dying ▫Documents limits to care, no Bipap, blood draws etc

Explain the Death Process Symptom changes – physical, neurological, other Reactions, communication What are the signs of death Care giving skills ▫manage secretions, swab oral mucosa ▫nose/eye care-drops, cleaning ▫passive movement, repositioning

Location of Death Clarify the preference with family Assist if appropriate for patient comfort Home vs. nursing home vs. hospital or other Help with transition and allow more comfortable death in appropriate setting Private room, minimal distractions, place for confidential conversations Bedside care, caregivers

Communication Encourage communication with dying person Say things that need to be said Encourage as much closeness as family feels comfortable with Maintain privacy

Symptoms Weakness, fatigue Loss in skin integrity, wounds – focus on comfort Decrease in oral intake is normal Fluids/electrolyte losses, avoid IV Inability to close eyes

Terminal Symptom Management Pain Respiratory dysfunction Managing secretions Sphincter control Hemorrhage Fever Terminal delirium Myoclonus

Transitory tachycardia Don’t confuse with restlessness, agitation, moans that can be terminal delirium Trial of opioids to see if helpful Continue pain treatment despite pt not being able to express verbally ▫Look for non verbal cues, grimacing, tachycardia, moaning with examination

Respiratory Dysfunction Opioids – start low dose and up-titrate. Use patient’s report of breathlessness as guide, not RR Bronchodilators Oxygen – generally helpful regardless of hypoxia or cause of dyspnea Ambient air flow – stream of airflow from fan can be helpful Chlorpromazine prn Benzodiazepines – if anxiety is component (lorazepam 1-2mg q1hr prn)

Secretions Decreased neurologic function, difficulty swallowing, coughing, loss of gag reflex Fluid/secretion buildup, congestion  gurgling noises Noisy respirations, “death rattle” common Stop po intake, warn families of risk for aspiration/asphyxiation Reposition patient onto side Trendelenburg position can help collect secretions into the oropharynx, then removed by suction or sponge gauze

Breathing Patterns in the Final Hours Cheyne stokes Rapid/Shallow Agonal

Secretions treatment Scopolamine patch and butylbromide Atropine drops – increased risk for cardiac, CNS excitation Glycopyrrolate – does not cross BBB, less risk for short term memory loss ▫Can be used po and IV

Sphincter Control Fever ▫Loss of sphincter control ▫Urinary catheter ▫Rectal tube ▫Antipyretics ▫Topical cooling

Terminal Delirium Reversible causes of delirium: ▫Hypoxia ▫Urinary retention ▫Electrolyte imbalances ▫Infection ▫Decreased cerebral perfusion ▫Adverse medication reactions

Terminal Delirium Timing of symptoms ▫Symptoms fluctuate with moments of lucidity and calmness; develops into a more agitated state Movements ▫Repetitious, purposeless movements (pulling blankets, tossing/turning) Vocalization ▫Unintelligible vocalization, moaning/groaning

Myoclonus Dehydration Electrolyte abnormalities Medicine side effects ▫Opioids Seizures

Treatments for myoclonis Benzodiazepines Consider rotate opioids Treat seizures if suspect or high risk Consider reversible causes if patient not imminent death ▫Hydration, electrolytes

When death is near Irregular breathing pattern, often pauses Urine output decreases or stops Patient may become lethargic and unresponsive Unable to control secretions Skin may become mottled, cool extremities and pale purple discoloration

When Death Occurs Loss of pulse, heart beat and breathing Pupils fixed and dilated Pale, body becomes cool Muscles initially stiffen, then relaxes after 406 hours Loss of sphincter control Eyes and jaw may be open

Bereavement Need time to mourn over loss Reactions to loss and grief: cognitive, emotional, physical ▫If patient is on hospice, bereavement is covered for 1 year after patient death under hospice benefit. ▫If not on hospice provide family with resources ▫Also assess if any young children, also may need specialty bereavement services

Cultural and Spiritual Support Be aware of cultural, religious traditions and preferences Chaplain support or spiritual services, prayers Social worker to help with funeral planning, memorial services, burial or cremation

References Carmichael M. Bereavement Assessment in Palliative Care – Identifying Those ‘At Risk’ Scot Journal of Healthcare Chaplaincy. Vol 8. No Ellershaw J. Care of the dying patient: the last hours or days of life. BMJ 2003; 326: 30. Hallenbeck J. Palliative Care in the Final Days of Life – “They Were Expecting It at Any Time” JAMA 2005; 293 (18): Mirando S. Integrated care pathway for the last days of life Palliat Med June : Palliative and End of life care.