Caring for the Dying Patient

1. Caring for the Dying Patient Keith Rischer RN, MA, CEN

2. Today’s Objectives… • Discuss the current ethical issues surrounding end of life care. • Identify goals of end of life care. • Compare & contrast the emotional & spiritual needs of the family and client who is dying. • Contrast early vs. late physical changes in the client who is dying. • Describe nursing goals and priorities for managing the client who is dying. • Contrast the needs of the family with the nurse in the client who has died.

3. End of Life Ethics • Assisted Suicide • Withdrawal food/fluids • Passive vs. Active Euthanasia • Legalized active euthanasia in US • Oregon “Death w/Dignity Act”

4. Advance Directives • Living will • Legal document instructs measure of care desired if incapable • Shortcomings • Life & death choices over unknown set of circumstances • Some ethicists believe document is “worthless” • Durable power of attorney

5. The Cure/Care Model D E A T H Life Prolonging Care Palliative/ Hospice Care Disease Progression

6. Concerns of Dying Patient Fear of physical pain and suffering Symptom burden Fear of unknown Fear of loneliness Anonymity Loss of choice over destiny Loss of dignity Loss of consortium Separation and lack of connection Spiritual Financial

7. Palliative Care’s Place in Course of Illness Life Prolonging Therapy Death Diagnosis of serious illness Medicare Hospice Benefit Palliative Care

8. Early Physical Changes ↓ Appetite ↑Weight loss Assistance with ADLs Pain (> or < ) Increased HR; Potential O2 deficiency Drowsiness Fatigue

9. Early Emotional Changes • Months to Weeks • Hope • Desirable • Expectational • Withdrawal • Changes in mood • Anger, irritable, hope, denial, ect • World view changes; gets smaller • Attending to business

10. Spiritual Distress Signs of Spiritual Distress Doubt Despair Guilt Anger Boredom Isolation Statements of regret Statements of unresolved hurt Nursing Interventions Ask about their source of strength Discuss sources of spiritual strength throughout their lives Assess support system Assess coping Refer to clergy/chaplain Ministry: ex. Stephens Ministry at churches

11. Family Needs Focus on dying patient without losing the present and future The work of daily life goes on Anticipatory grief Increase in responsibilities (house, finances, work, children, and acting as a caregiver). Need for support from family, community, spiritual faith.

12. Goals of Nursing Care for the Dying • Hospice • Improve quality of life w/terminal illness • Control symptoms • Pain • N&V • Fatigue • SOB • Identify-prioritize needs • Promote meaningful interactions w/family and others • Facilitate peaceful death

13. Nursing Care:Holistic • Chaplain/ Clergy visit • Hospice/ respite care • Hospice/Home Care • Provide CNA daily for ADL hygiene and care • More frequent RN visits • More frequent Social Worker visits • Talk candidly about end of life= how it will likely be for that specific patient

14. Nursing Care:Physical Priorities Pain management N&V management Fatigue management Skin care Mouth care Urinary care Respiratory care Comfort

15. Nursing Care: Physical Priorities • Attend to any needs of patient • Pain • Long acting analgesics with medication for breakthrough pain • May need to increase doses of medication • Counsel pt./family on pain cycle and breakthrough pain • Nausea • Antiemetics…Zofran • Foods that taste good with increased protein and fat • Ensure or supplements • Comfort • Comfortable bed • Chair • pillows

16. Why Pain? • Practitioners are not trained in state-of-the art pain management • Myths about addiction, dependence, and tolerance abound • The toll that unrelieved pain takes on the body and mind is not understood or acknowledged • Fear that pain intervention might cause the patient to die • Flawed assessments • Disconnect • Failure to look at non-physical sources

17. Nursing Care: Physical Priorities • Mobility • Cane, walker, • Prevent falls • Falls often indicate change in status • Sleep • Sleeping more? Less? Look at medications and physical status. Normal to increase in sleeping. • Fatigue • Do what only matters, find what is important to patient • Hospice volunteer for family for relief

18. Nursing Care: Physical Priorities • Neuro • Changes due to disease (brain mets, lack of oxygen?) • CV • May need fan for cool or light weight blankets for warmth • Lungs • Teach use of several pillows, O2 may be needed • Skin • Teach positioning, turning, and prevention of breakdown • GI • Use of stool softeners is a must; may need laxatives later on • Urinary • May have incontinence (pads, diapers, last resort is foley) • Medications • Order what is needed for comfort

19. Changes with Weeks Remaining:Physical Changes • Profound weakness • Bedbound • Falling if ambulating • Muscle weakness • Potential skin breakdown • Increased care needed • VS • ↑ HR ↓ Pulse

20. Dyspnea Managment • Morphine sulfate • Diuretics • Bronchodilators • Antibiotics • Anticholinergics • Atropine • Sedatives • Oxygen

21. Changes with Weeks Remaining:Emotional Changes • ↑ Fear, apprehension or peacefulness • ↑ withdrawal into self • Often sees “spiritual beings” • God; previous family members who have died speaking out to them • Only allows family and loved ones in their world • Starts to say goodbye to loved ones • A sense of peace and finished business may be felt OR a sense that there is not enough time left to finish life

22. Changes with Weeks Remaining: Family Needs • How to care for their love one • Focus is home care management • May not be able to get to PCP’s office • May involve equipment and teaching nursing care for ADLs • O2, transfer techniques, shower chair, turning techniques, decubitus care, mouth care, foley care, ect • Pain relief • Symptom management • Medication management increases • Subq meds, rectal suppositories • Psychological support increases • Focus on quality of life vs. quantity

23. Imminent Death:Nursing Care • Medication management • If unable to swallow (subq, rectal suppositories) • For death rattle “Scopolamine patch” works • Pain management • Comfort measures increase • Turning, mouth care, positioning of limbs, warm/cool measures, eye drops, ect • Assistance respiratory with positioning

24. Imminent Death:Physical Changes • Actively Dying: 48-72 hours remain • Confusion and disorientation • Metabolic changes • Withdraws from family “going” somewhere • Decreased consciousness • May refuse all fluid and food • Body conservation of energy for function • Total care ↓ alertness ↑ drowsiness • Metabolic changes and decreased oxygen to brain • ↑ Restlessness • ↓ BP ↑HR (120-150) • Peripheral circulation diminishing to vital organs • Mottling of extremities

25. Imminent Death:Physical Changes • Incontinence of urine and bowel • Increased muscle relaxation and decreased consciousness • May be incontinent around the foley catheter • Dependent areas become cyanotic & cold • Skin color is pale and mottling of skin occurs (knees, legs, nose) • Slower pupil response to light, & eyes fixed stare-even in sleep • Muscle becomes slack, decreased oxygen • Speech may be difficult and soft • Muscle becomes slack • Hearing is thought to remain present • Vision may be lost

26. Imminent Death:Physical Changes • Cheyne-Stoke respirations • Metabolic and oxygen changes • Decreased RR • Death rattle • Profuse perspiration • Decreased circulation to all organs as they are shutting down • ↓ urinary output • Decreased vital organ/ kidneys shutting down • Body temp varies • May decrease or rise

27. Imminent Death:Emotional Needs Sense of peacefulness in the room Family and loved ones present Caring feeling by loved ones Its going to be OK Its OK to go now Your work is done I love you/ I forgive you

28. Imminent Death: Family Needs • Presence of Nurse • Care for patient • Support for patient and family • Educate family throughout the process to avoid the feeling of not knowing what next • Be the detail person • Be prepared for how family will handle death • Know emergency numbers for family/hospice • Make final arrangements • Mortuary; pick up equipment, clean up room.

29. Imminent Death: Family Needs • Encourage them to stay with patient • Touch and talk with patient • Be vigilant about what the patient hears, even though he/she cannot respond • Encourage active comfort measures • Light massage, mouth care, • Allow them time to privately grieve with family • Acknowledge the process of dying • Skin cooling, cyanosis, Cheyne-Stokes, urinary incontinence (all this is normal)

30. Pronouncement of Death • Cessation of blood pressure, pulse and respirations. • In hospice is pronounced by RN (or Social Worker in some states) • Blood pressure may be not be able to be palpated for hours before death • Final respirations may be gasping • Eyes are fixed (pupils fixed and dilated) • No apical pulse

31. Needs of the Family After Patient’s Death • Presence of a support system • Family, chaplain, nurse, social worker • Make sure someone is with them • Don’t leave them alone to go home • No One Dies Alone at ANW • Vounteers who stay during last hours • Call family members if needed (when unexpected) • Allow time for the family to spend with the patient who died

32. Needs of the Nurse After the Patient’s Death • Support system • Other staff, friends, family (who can listen to you) • Physical and emotional rest • Attend memorial or burial service for closure • Final separation from family • Remind yourself that you made a difference

33. Near Death Experiences • Altered state of consciousness during brief cessation of VS (cardiac arrest) • Tunnel of light • Sense of being separated from body • Fear & anxiety-torment • Afterwards for patient • More spiritual minded-less material focused • Less fearful of death • Nurse’s role • “What do you remember about being unconscious?” • “Did you have a sense of being separate from your body while we were reviving you?” • Avoid negative statements during code