Palliative Care; A Nursing Response

1. Palliative Care; A Nursing Response E. Veronica Cheney, RN, BSNS

2. American Nurses Association – Palliative Care Scope of Practice “Purpose: Nurses have always been at the bedside of dying patients. Their role in providing the highest quality of remaining life and support at the end of life for both patients and their loved ones is traditional, accepted, and expected. The nurse’s fidelity to the patient requires the provision of comfort and includes expertise in the relief of suffering, whether physical, emotional, spiritual, or existential. Increasingly, this means the nurse’s role includes discussions of end-of-life choices before a patient’s death is imminent. The purpose of this ANA Position Statement is to articulate the roles and responsibilities of registered nurses in providing expert end-of-life care and guidance to patients and families concerning treatment preferences and end-of-life decision making. It is meant to provide information to guide the nurse in vigilant advocacy for patients throughout their lifespan as they consider end-of-life choices, and includes discussion of personal ethical dilemmas that can occur when caring for the dying.” (ANA, 2014)), http://www.nursingworld.org/

3. The Goal of Palliative Nursing “The goal of hospice and palliative care nursing “is to promote and improve the patient’s quality of life through the relief of suffering along the course of illness, through the death of the patient, and into the bereavement period of the family” (ANA & HPNA, 2007, p.1).

4. WHO Definition of Palliative Care Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.  World Health Organization. (2014). WHO definition of palliative care. Retrieved from World Health Organization: http://www.who.int/cancer/palliative/definition/en/

5. WHO Definition of Palliative Care Palliative care: • provides relief from pain and other distressing symptoms; • affirms life and regards dying as a normal process; • intends neither to hasten or postpone death; • integrates the psychological and spiritual aspects of patient care; • offers a support system to help patients live as actively as possible until death; World Health Organization. (2014). WHO definition of palliative care. Retrieved from World Health Organization: http://www.who.int/cancer/palliative/definition/en/

6. WHO Definition of Palliative Care Palliative care: • offers a support system to help the family cope during the patients illness and in their own bereavement; • uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated; • will enhance quality of life, and may also positively influence the course of illness; • is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications. World Health Organization. (2014). WHO definition of palliative care. Retrieved from World Health Organization: http://www.who.int/cancer/palliative/definition/en/

7. The Beginning Manifestations For all patients entering the end stages of disease and those with chronic comorbidities

8. Failure to Thrive • Malnutrition is the key pathophysiological finding • Institute of Medicine – weight loss of more than 5%, decreased appetite, poor nutrition, physical inactivity • Malnutrition manifests as: weight loss, loss of functional skills and psychological decline Ali, MD, N. (2012). Failure to thrive in elderly adults. Medscape Reference.

9. Common Medical Conditions Associated with Failure to Thrive • Cancer: metastases • Chronic lung disease; respiratory failure • Chronic renal failure; insufficiency • Depression; psychosis, other psychiatric disorders • Hip or large bone fractures; functional impairment • Inflammatory bowel disease; malnutrition, malabsorption • MI, CHF, heart failure • Recurrent & chronic infections; UTI, pneumonia • Stroke: dysphagia, cognitive loss Ali, MD, N. (2012). Failure to thrive in elderly adults. Medscape Reference.

10. Failure to Thrive Etiology “The Dwindles” • Diseases (medical illness) • Delirium • Dementia • Drinking alcohol; substance abuse • Drugs - medications • Deafness, blindness, other sensory deficits • Dysphagia • Depression • Desertion • Destitution • Despair Ali, MD, N. (2012). Failure to thrive in elderly adults. Medscape Reference.

11. The Six Phases of Dying

12. Dying is a process (3-6 months) • All patients behave the same way • Eating -- tasting -- looking at food • Sleep wake cycle reverses • Decreased functional ability • Increased assistance with ADL’s www.hospiceofmarion.com

13. Terminal Stage Signs (last 2-3 months) • Beyond cure or rehab • Progressive illness • Anorexia/Cachexia (wasting) Syndrome • Progressive weakness • Increasing debility/dependence • Declining condition • Psychosocial & spiritual needs • Family in crisis www.hospiceofmarion.com

14. Pre-active Stage Signs (lasts 2-3 weeks) • Little oral intake • Increasing breathlessness • Rising heart rate • Reversal of sleep-wake cycle • Delirium • Restlessness • Fluctuating level of consciousness • Spiritual events – “visits” from those already passed/angels www.hospiceofmarion.com

15. Imminent Death Syndrome (days-hours) • Decreased responsiveness/consciousness • Decreased intake of food/water • Decreased urine output • Skin color and temperature decrease • Mottling • Decreased heart rate and blood pressure fluctuations • Swallowing dysfunction • Breathing changes/apnea • Restlessness • Gaze as if through you www.hospiceofmarion.com

16. Agonal Stage Signs (last 2-3 hours) • Stupor or coma • Tachypnea • Cheyne-Stokes/agonal pattern • Imperceptible radial pulses (last 4-6 hours) • Tachycardia or bradycardia • Pupils dilated, fixed (last 15-30 minutes) www.hospiceofmarion.com

17. Death Event (last 2-3 moments) • Spiritual experiences (moment of death) • Bolt upright as if seeing; smiling • Epiphora (final tear) • Bright reflection • Sense of calm (end of suffering/reunion) www.hospiceofmarion.com

18. Symptom Management Symptoms associated with end-of-life and their management

19. Medication Dosing Rule of Thumb • Most medications start on the PRN bases • Assess pain and anxiety frequently using the numeric pain scale (you can adapt the pain scale for anxiety when the patient is alert) • If you have to dose a patient four consecutive times with PRN medications notify the MD/NP as soon as possible for medication adjustment (either increasing the dose, initiating routine, or increasing the frequency of administration) • The above applies to respiratory distress and excess secretion control medications such as Robinol

20. Medication Dosing Rule of Thumb • Initial end-of-life medications will start out PO/SL. When the patient is no longer able to swallow switch medications to the subcutaneous route • Subcutaneous (SQ) medications are more effective, ensures all medication is administered (not draining out of the mouth) and absorbs within ten minutes ensuring fast metabolism for effective symptom management • When using the SQ route ensure flushing with 0.3 ml NS after medication administration and no more than 2ml (flush included) to each SQ port (might require more than 1 site)

21. Pain Management

22. Pain Management • Top priority • Initially assess pain with numeric pain intensity scale • As patient progresses use the behavioral pain scale • Most common medications morphine and hydromorphone • Manage acute breakthrough pain • Initiate bowel regiminefor side effect management of constipation D'Arcy, MS, CRNP, CNS, Y. (2012). Managing end-of-life symptoms. American Nurse Today, 7(7), 22-27.

23. Pain Medication Recommendations University of Pittsburg. (2013, July). Palliative care symptom guide. Retrieved from Pain Card: https://www.dom.pitt.edu/dgim/spc/downloads/paincard2013.pdf

24. Pain Scales: Wong-Baker Google Images (2014)

25. Behavioral Pain Scale (BPS) Google Images (2014)

26. Anxiety

27. Anxiety • An expected finding • Etiology: • Chronic mental health disorders – Generalized anxiety disorder • Chronic use of antianxiety medications • Fear of the unknown • Spiritual distress • Fear of dying, dying alone • Dyspnea • Worry over family and unresolved life issues • Adapt the pain scales (see previous slides) for level of anxiety

28. Anxiety Medication Recommendations (IAHPC), I. A. (2013, January). WHO-Essential Medicines in Palliative Care. Retrieved from World Health Organization: http://www.who.int/selection_medicines/committees/expert/19/applications/PalliativeCare_8_A_R.pdf

29. Terminal Restlessness/Agitation

30. Definition: Terminal restlessness is a syndrome observed in patients in their last days of life. It is a variant of delirium and refers to a spectrum of signs of central nervous system irritability that may include restlessness, agitation, distressed vocalizing, twitching, myoclonic jerking or recurrent fitting (Binns, 2014) • Patients that are too week to stand but insist on getting up • Uncomfortable even with adequate pain management • Yelling and calling out • Extremely agitated • Hallucinations • Psychotic episodes • Paranoia Hospice Patients Alliance. (2014). Terminal restlessness or agitation. Hospice patients alliance.

31. Determining the Cause • Oliguria – bladder distention (end-of-life catheter placement might be required) • Assess pain • Oxygenation • Repositioning • Constipation • Infection • Metabolic changes • Emotional distress; spiritual assessment of needs • New medications • Pre-active phase of death Hospice Patients Alliance. (2014). Terminal restlessness or agitation. Hospice patients alliance.

32. Terminal Restlessness and agitation Medication Recommendations University of Pittsburg. (2013, July). Palliative care symptom guide. Retrieved from Pain Card: https://www.dom.pitt.edu/dgim/spc/downloads/paincard2013.pdf

33. Dyspnea Shortness of air

34. Dyspnea Recommendations • Dyspnea is managed with opioid medications. • Start with a loading dose • Repeat loading dose bolus hourly until well controlled • Adjust medications as needed • Reposition • Initiate O2 if required • Treat cause of dyspnea, i.e. anxiety, and or pain. D'Arcy, MS, CRNP, CNS, Y. (2012). Managing end-of-life symptoms. American Nurse Today, 7(7), 22-27.

35. Weakness & Fatigue

36. Weakness and fatigue • A common occurrence with palliative patients • Sometimes diet can assist in converting fat to energy • Let the patient decide on activity level • Encourage frequent rest periods • Can assist patient in cope with suffering D'Arcy, MS, CRNP, CNS, Y. (2012). Managing end-of-life symptoms. American Nurse Today, 7(7), 22-27.

37. Constipation

38. Constipation • Most distressing symptom • Expected with use of opioids • Bowel regimen should always be in place with opioid use • Signs and symptoms: abdominal cramps, nausea and vomiting, continued urge to defecate • Poor oral intake increases risk for dehydration and constipation D'Arcy, MS, CRNP, CNS, Y. (2012). Managing end-of-life symptoms. American Nurse Today, 7(7), 22-27.

39. Constipation Medication Recommendations University of Pittsburg. (2013, July). Palliative care symptom guide. Retrieved from Pain Card: https://www.dom.pitt.edu/dgim/spc/downloads/paincard2013.pdf

40. Secretion Control Recovery position

41. Poor Secretion Control • A result of type 1 or type 2 excessive secretions • Type 1: Oral secretions of the mouth • Type 2: Bronchial secretions • Death Rattle – air moving over secretions in the airway • Suctioning is not recommended: • Causes discomfort and distress • Leads to agitation • Increases secretion production • Positioning (see recovery position) • Robinul does not cross blood brain barrier which reduces occurrence of CNS stimulus D'Arcy, MS, CRNP, CNS, Y. (2012). Managing end-of-life symptoms. American Nurse Today, 7(7), 22-27.

42. Secretion Control Medication Recommendations University of Pittsburg. (2013, July). Palliative care symptom guide. Retrieved from Pain Card: https://www.dom.pitt.edu/dgim/spc/downloads/paincard2013.pdf

43. The Recovery Position Google Images, (2014)

44. The Recovery Position • Placing a patient in the recovery position will help to relieve dyspnea • Uses gravity to facilitate drainage of excessive secretions built up in the lungs and esophagus • Relieves pressure on bony prominences • Reduces the need to turn the patient frequently which disrupts comfort in the later phases of death and can cause severe pain • Caution: Some patients with certain medical conditions such as COPD may not tolerate this position • Place a pillow under the accessible arm, between legs, and under feet • Remove all pillows from under the head and place a towel with a pillow case on it under the cheek touching the mattress • Teach family what to expect (excessive odorous secretions requiring frequent oral care) • Do not use Yonkers with bedside suction

45. Nausea & Vomiting

46. Nausea and vomiting • May develop early • Etiology of pharmacological therapy – chemotherapy • May lead to dehydration • Leads to anorexia • Causes discomfort • Increases anxiety

47. Nausea & Vomiting Medication Recommendations University of Pittsburg. (2013, July). Palliative care symptom guide. Retrieved from Pain Card: https://www.dom.pitt.edu/dgim/spc/downloads/paincard2013.pdf

48. Nutritional Problems

49. Nutritional Problems • Little oral intake – reduction of caloric intake to support physiological needs • Nutritional needs decrease with progression of dying phases • Traumatic to family members – does not bother the patient • Offer soft foods and/or favorite foods – patient may request favorite foods • Hunger is suppressed due to the body no longer requiring nutrition • Provide support and education to the family D'Arcy, MS, CRNP, CNS, Y. (2012). Managing end-of-life symptoms. American Nurse Today, 7(7), 22-27.

50. Vital Signs