Patient-Centered Care in Palliative and End-of-Life (EOL) Care

1. Patient-Centered Care in Palliative and End-of-Life (EOL) Care Carla Hunt, RN, BSN “To live in hearts we leave behind is not to die” Thomas Campbell

2. Realities of Care • Rapidly aging U.S. population • Medical care has limitations and inappropriate use of advanced technology to prolong life when death is inevitable (Peaceful Death: Recommended Competencies and Curricular Guidelines for End-of-Life Care, 1997). • Exorbitant expense is associated with futile care • 2.5 million U.S. deaths have been negotiated annually while life-extending/sustaining measures were provided (Tilden & Thompson, 2009).

3. Palliative Care • Intends to improve the quality of life for patients and families faced with life-limiting illness (World Health Organization, 2012). • Provides support in chronic illness: cardiac (CHF), pulmonary (COPD), renal disease, cancer, immune suppression, HIV/AIDS , dementia, traumatic injury (McLean-Heitkemper, 2011). • Care or treatment that reduces or controls symptoms instead of seeking cure or efforts to delay death.

4. Palliative Care • Begins after the patient receives the diagnosis of life-limiting illness. • Goals: • Prevent and relieve patient suffering • Improve quality of life • Timeframe includes hospice, end-of-life, and bereavement. • Generally precedes hospice. • Hospice philosophies are the foundation ofpalliative care. McLean-Heitkemper, 2011

5. Hospice • Holistic, compassionate care for the dying and their family during terminal illness. • Hospice Medicare eligibility requires a prognosis of less than six months life expectancy. • Provides supportive care for patients in the last phase of incurable disease. Palliative focus instead of curative. • Preserves dignity and quality of life throughout the dying process. • Focuses on symptom management, advanced care planning, spiritual care, family support, and bereavement. McLean-Heitkemper 2011

6. Hospice • Addresses physical, emotional, social, and spiritual needs of patients and families. • Collaborative and coordinated care via interdisciplinary team members. • Care team includes: physicians, pharmacist, nurses, nursing assistants, chaplain, volunteers, social worker, and bereavement coordinator. • Services offered in the home, hospital, residential care center, and nursing home. McLean-Heitkemper 2011

7. End-of-Life • Generally refers to care in the final phase of illness when the patient is near death or actively dying. • EOL care may be a few hours, weeks, or months . • The timeframe from diagnosis to death varies by diagnosis and disease extensiveness. • Institute of Medicine considers EOL as the time of coping with terminal illness or advanced age even if death is not clearly imminent. McLean-Heitkemper, 2011

8. Goals of EOL Care • Comfort and supportive care for the patientand family during the dying process. • Improved quality of life for the life that remains. • Dignified and peaceful death. • Emotional support for both patient and family. McLean-Heitkemper, 2011

9. Consider for a moment….. • How would your life change if you learned you would die in the next 12 months, six months, or one month? (Sherman, Matzo, Panke, Grant, Rhome , 2003) • What would you want to do if you were diagnosed with a terminal condition? • How would you need to do to prepare? • Never loose sight of how very personal this is for the patient and family!

10. When will death occur? • Prognosis is influenced by disease, desire to live, and sometimes anticipation of special events (Sherman, Matzo, Pitorak, Ferrlll, Malloy, 2005). • Not all patients experience the same symptoms as there is no specific sequence (McLean-Heitkemper , 2011). • Death results when all vital organ function stops (cardiac, respiratory, and brain).

11. Brain Death • No brain or brainstem function. • Cerebral cortex no longer functions or is irreversibly damaged. • Clinical brain death in the ICU—heart continues to beat (intubation with mechanical ventilation). • Legal definition—brain function must cease for brain death to be pronounced and life support removed. McLean-Heitkemper 2011

12. Death Draws Near: Physical Manifestations • Slowed metabolism and impaired organ function that leads to multi-system failure and organ shut-down. • Respirations are usually the first to stop. • Heart usually stops within a few minutes of respirations. McLean-Heitkemper 2011

13. Death Draws Near: Physical Manifestations cont. Sensory: • Decreased sensation • Decreased ability to perceive pain and touch • Poor sense of taste and smell • Eyes: blurred vision, absent blink reflex, sunken, glazed over, blank stare, slit eye lids • Loss of hearing (last sense to loose) • Inability to respond McLean-Heitkemper, 2011

14. Death Draws Near: Physical Manifestations cont. Respiratory: (distress and air hunger common) • Rapid, slow, shallow, irregular breathing • Cheyne-Stokes respirations (alternating apnea and deep, rapid respirations) • Slowed respirations “terminal gasps” or “guppy breaths” • Unable to cough and clear secretions • Noisy, gurgling secretions audible without a stethoscope, “death rattle” McLean-Heitkemper, 2011

15. Death Draws Near: Physical Manifestations Cardiovascular: • Increased heart rate that begins to slow • Weak or absent pulses • Progressive decrease in blood pressure • Delayed absorption of injected medications • Irregular rhythm McLean-Heitkemper 2011

16. Death Draws Near: Physical Manifestations cont. • Urinary: • Decreasing output • Incontinent • Inability to void • Gastrointestinal: • Decreased motility and peristalsis • Abdominal distention, nausea, and constipation • Loss of sphincter control makes incontinence common as death occurs. McLean-Heitkemper 2011

17. Death Draws Near: Physical Manifestations cont. • Musculoskeletal: • Severe weakness and inability to move • Relaxed facial tone—jaw drop, difficulty/inability to speak and/or swallow • Poor body posturing and alignment • Impaired gag reflex • Myoclonus (involuntary jerking commonly seen with high-dose opioids) McLean-Heitkemper 2011

18. Death Draws Near: Physical Manifestations cont. • Integumentary: • Cold, clammy, diaphoretic, fever • Cyanosis of nose, nail beds, ears • Mottling of hands, feet, toes, arms, legs, and knees • Skin may have wax-like appearance McLean-Heitkemper 2011

19. Death Draws Near: Psychosocial Manifestations cont. • Conflicting decisions • Anxiety regarding things left undone • Feelings of meaningless life contributions • Fear of pain or shortness of breath • Loneliness • Helplessness • Depression McLean-Heitkemper 2011

20. Death Draws Near: Psychosocial Manifestations cont. • Anticipatory grieving • Difficulty saying goodbye • Reminiscent of life’s events • Fear of loss of independence and functional decline • Recognized condition deterioration that patient correlates with approaching death • Restlessness • Inability to understand communication McLean-Heitkemper 2011

21. Confusion-Disorientation-DeliriumManagement • Determine etiology—Disease progression, fever, nearing death awareness, opioid effects, full bladder , hypoxia, metabolic imbalances, toxin accumulation due to liver or renal failure. • Management—Assess cause and treat, safety precautions, administer sedatives, speak truthfully regarding condition, provide spiritual and emotional support, assess for caregiver fatigue. McLean-Heitkemper 2011; Sherman et al., 2005

22. Dyspnea Management Pharmacologic Nonpharmacologic • Opioids(morphine) • Bronchodilators (albuterol) • Diuretics (furosemide) • Benzodiazpines(lorazepam; alprazolam) • Anxiolytics(buspirone) • Steriods(dexametasone, Solu-Medrol) • Antibiotics • Oxygen if hypoxic • Fan for air circulation, cool room temperature • Positioning, elevate head of bead • Suctioning Sherman et al., 2004

23. Gastrointestinal Management • Nausea • Antiemetics • NG if obstructed • Constipation • Stimulant (Senna) • Bulk laxatives (Metamucil) • Warm fluids (prune juice) • Diarrhea • Opioids (Loperamide hydrochloride) • Bulk forming agents • Somatostatin (Sandostatin) Sherman et al., 2004

24. Fatigue-Weakness Management • Increased weakness Interventions include: • Assist with ADL’s • Bedrest—ROM, turning, positioning, and skin assessment. • Alter medication routes—least invasive and most effective • Aspiration precautions • Suction McLean-Heitkemper 2011; Sherman et al., 2004; Sherman et al., 2005

25. Pain Management • Patients fear that they will die in pain • Scheduled analgesia for pain control (long/short acting) • Inability to swallow—consider alternate administration routes • Interventions—massage, reposition, bracing/splinting • Alternative/ complimentary therapies • Use standardized tools for pain assessment McLean-Heitkemper 2011; Sherman et al., 2004

26. Comfort Care:Actively Dying • Simple patient directions • Oral care—sips of fluid, mouth care, lip moisturizer • Preventive skin care—manage incontinence, skin barriers. • Medications to alleviate respiratory congestion, agitation, pain, and dyspnea. • Antiemetics for discomfort associated with nausea and vomiting. Sherman et al., 2005

27. Care of the Spirit • May or may not mean religion • Spiritual support provides strength and decreases despair at EOL • Pray with patient and family • Involve pastoral services • Recognize spiritual diversity and ritualistic EOL practices McLean-Heitkemper 2011

28. Emotional Support • Provide hope, comfort, and peacefulness (Matzo, Sherman, Sheehan, Ferrell, & Penn, 2003). • Reassure the patient you will not abandon them • Ask yourself, “What would I do if this were my family member?” • Provide realistic and honest information • Prepare for emotional decline and cognitive changes • Empathetic and compassionate care (McLean-Heitkemper, 2011) • Encourage sharing of life stories, memories, and life contributions • Live your life until you die (Cramer, 2010).

29. Communication • Communication is 7% verbal, 38% tone, and 55% body language (Cramer, 2010) • Be present, use eye contact and touch, sit at the bedside, listen more than you talk. • Communicate with open acceptance (McLean-Heitkemper, 2011) • Create an environment that feels safe to share feelings and express emotion. Silence is ok. • Nearing death awareness: • Patient may see or talk with a loved ones that have died • Patient may provide instructions for those left behind

30. Response to Loss • Grief is normal, healthy process of reacting to loss and adapting to change. • Bereavement is the time after death when grief and mourning occur • Factors that influence grief: • Personal characteristics • Relationship with the deceased • Life stressors • Coping resources • Support systems • Often begins prior to death • Powerful, affects all aspects of one’s life • Nurse may be the recipient of anger. Do not react or take it personal. McLean-Heitkemper 2011; Sherman et al., 2003

31. Grief/Bereavement: Response to loss • Poor concentration, persistent sadness, constant thoughts of the one who died • Guilt, anger, abnormal behavior • Weight loss, poor appetite • Difficulty sleeping, palpitations • Anxiety, fear, loneliness, hopelessness, powerlessness McLean-Heitkemper 2011

32. Legal and Ethical Principles in Complex EOL Care • Care determined by the patient’s wishes (McLean-Heitkemper ,2011) • Organ and tissue donations • Advance directives • Medical power of attorney or living wills • Resuscitation • The nurse must recognize how her/his personal beliefs, values, and expectations influence EOL care (Matzo et al., 2003). • Fear of death, lack of experience , not knowing what to say, unresolved grief, and disagreement with patient wishes • A nurse has an ethical responsibility to ensure everything possible is done to provide a peaceful death.

33. Organ and Tissue Donation • Any part of the entire body may be donated • Decision may be made prior to death but family must consent at time of donation • Usually retrieved within a few hours after death • Designated requestors at every hospital McLean-Heitkemper 2011

34. Legal Documents: Protect the Patient’s Wishes • Advance directives • Written statements of medical care wishes • Sometimes called a living will • Directive to physicians • Patient’s desire to accept or deny treatment • Durable power of attorney for health care • Lists the person to make health care decisions should a patient become unable to make informed decisions for self McLean-Heitkemper 2011

35. Common Legal Documents • Do not resuscitate (DNR) • Orders instructing health care providers not to perform CPR • Often requested by family • Must be signed by a physician to be valid • Purple bracelet placed on client • Push to change the term to allow natural death (AND) to more clearly describe what occurs McLean-Heitkemper 2011

36. Ethical Issues • Beneficence—To do good without causing harm. • Give effective amounts of timely pain medication. • Failure to give effective pain medication and adequate dosing neglects the principles of beneficence. • Nonmaleficence—To “do no harm”. To refrain from causing harm. • Effective pain control that alleviates suffering in the terminally ill. • Under treatment of pain may be more harmful than the presumed harmful side effects. • Secondary effects that may hasten death are ethically justified. Bernhofer, 2011

37. Postmortem Care • After patient is pronounced dead the nurse prepares or delegates preparation of the body • If death is in a semi-private room—move the other patient out • Considerations when preparing body: • Cultural and ritualistic practices • Adherence to policies and procedures • Close the patient’s eyes • Replace dentures • Wash the body as needed • Remove tubes and dressings • Straighten the body • Leave a pillow in place to support the head McLean-Heitkemper 2011

38. Postmortem Care • Immediate family viewing and saying final goodbye • Family should be allowed privacy and as much time as needed with the deceased loved one • Body may stay on the unit 2 hours McLean-Heitkemper 2011

39. Special Needs of the Nurse • Recognize what can and cannot be controlled • It is appropriate to cry with the patient and family during the grieving process • Care for the dying is emotionally challenging for everyone involved • It is common for nurse to feel helpless and powerless • Feelings of sorrow, guilt, and frustration need to be expressed McLean-Heitkemper 2011

40. Nursing ManagementNursing Diagnoses:Psychosocial • Acute/ chronic confusion • Compromised family coping • Death anxiety • Disturbed thought processes • Spiritual distress • Ineffective denial • Interrupted family processes • Insomnia

41. Nursing ManagementNursing Diagnoses: Psychosocial • Fear • Grieving • Hopelessness • Impaired religiosity • Impaired social interaction • Impaired verbal communication • Ineffective coping • Readiness for enhanced spiritual well-being • Risk for loneliness • Social isolation

42. Nursing Management Nursing Diagnoses: Physical • Acute/ chronic pain • Bowel incontinence • Constipation • Decreased cardiac output • Diarrhea • Impaired tissue integrity • Impaired urinary elimination • Ineffective airway clearance • Impaired physical mobility

43. Nursing Management Nursing Diagnoses: Physical • Fatigue • Imbalanced nutrition: less than body requirements • Impaired bed mobility • Impaired comfort • Impaired gas exchange • Impaired oral mucous membrane • Impaired skin integrity • Impaired swallowing

44. Nursing Management Nursing Diagnoses: Physical • Ineffective breathing pattern • Ineffective thermoregulation • Ineffective tissue perfusion • Nausea • Risk for aspiration • Risk for infection • Risk for injury • Self-care deficit • Total urinary incontinence

45. Resources • American Cancer Society (http:/www.cancer.org) • National Hospice and Palliative Care Organization (http://www.nhpco.org) • Hospice and Palliative Nurses Association (http://www.hpna.org) • Oncology nursing Society (http://ons.org) • Journal of Supportive oncology: Quality of Life/Symptom Management/Palliative care (http://www.supportiveoncology.net) • End of Life Nursing Education Consortium From the American Association of College of Nursing (http://www.aacn.nche.edu/elnec/curriculum.htm)

46. References Ackley, B.J. & Ladwig, G.B. (9thed). Nursing diagnosis handbook: An evidence-based guide to planning care. Mosby. American Association of Colleges of Nursing. (2004). Peaceful death: Recommendedcompetencies and curricular guidelines for end-of-life nursing care. Retrieved from http://www.aacn.nche.edu/Publications/deathfin.htm Bernhofer, E. (2011). Ethics: Ethics and pain management in hospitalized patients. The Online Journal of Issues in Nursing, 17(1). doi: 10.3912/OJN.Vol17No01EthCol01 Cramer, C. F. (2010). To live until you die: Quality of life at the end of life. Clinical Journal of Oncology Nursing, 14(1), 53-56. doi: 10.1188/10.CJON.53-56 Matzo, M. L., Sherman, D. W., Lo, K., Egan, K. A., Grant, M., & Rhome, A. (2003). Strategies for teaching loss, grief, and bereavement. Nurse Educator, 28(2), 71-76. doi: 10.1097/00006223-200303000-00009 Matzo, M. L., Sherman, D. W., Nelson-Marten, P., Rhome, A., & Grant, M. (2004). Ethical and legal issues in end-of-life care: content of the End-of-life Nursing Education Consortium Curriculum and teaching strategies. Journal for Nurse in Staff Development, 20(2), 59-66. doi: 10.1097/00124645-20040300-00001

47. References McLean-Heitkemper, M. (2011). Palliative care at the end-of-life. In S. L. Lewis, S. Ruff-Dirksen, M. McLean-Heitkemper, L. Bucher, & I. M. Camera (Eds.), Medical-surgical nursing: Assessment and management of clinical problems (pp. 153-166). St. Louis, MO: Mosby. Sherman, D. W., Matzo, M. L., Coyne, P., Ferrell, B. R., & Penn, B. K. (2004). Teaching symptom management in end-of-life care: The didactic content and teaching strategies based on the End-of-Life Nursing Education Curriculum. Journal for Nurses in Staff Development, 20(3), 103-115. doi: 10.1097/00124645-200405000-00001 Sherman, D. W., Matzo, M. L., Panke, J., Grant, M., & Rhome, A. (2003). End-of-Life Nursing Education Consortium Curriculum: An introduction to palliative care. Nurse Educator, 28(3), 111-120. doi: 10.1097/00006223-200305000-00004 Sherman, D. W., Matzo, M. L., Pitorak, E., Ferrell, B. R., & Malloy, P. (2005). Preparation and care at the time of death: Content of the ELNEC Curriculum and teaching strategies. Journal for Nurses in Staff Development, 21(3), 93-100. doi: 10.1097/00124645-200505000-00003 Tilden, V. P., & Thompson, S. (2009). Policy issues in end-of-life care. Journal of Professional Nursing, 25(6), 363-368. doi: 10.1016/j.profnurs.2009.08.005 World Health Organization. (2012). http://www.who.int/cancer/palliative/en/