2014 PPE Disclosure Statement

1. 2014 PPEDisclosure Statement It is the policy of the Oregon Hospice Association to insure balance, independence, objectivity, and scientific rigor in all its educational programs. All faculty participating in any Oregon Hospice Association program is expected to disclose to the program audience any real or apparent affiliation(s) that may have a direct bearing on the subject matter of the continuing education program. This pertains to relationships with pharmaceutical companies, biomedical device manufacturers, or other corporations whose products or services are related to the subject matter of the presentation topic. The intent of this policy is not to prevent a speaker from making a presentation. It is merely intended that any relationships should be identified openly so that the listeners may form their own judgments about the presentation with the full disclosure of the facts. This presenter has no significant relationships with companies relevant to this presentation to disclose.

2. Puff: Not-so-magical Strategies for Breathlessness Georgann Wingerson, MSW, LCSW, MPA Michelle Bearden, MBA Providence Hospice September 2014

3. Bios • Georgann has worked in health care as an ICF administrator, a customer service manager in both PPO and hospital settings, and a health plan contracts administrator. She always wanted to work for hospice, but the opportunity did not present itself. Nine (9) years ago, she returned to school to get her MSW in order to work in a hospice. She is pleased to say that she has worked the last seven (7) years as a hospice social worker, her favorite position in her career. Georgann.wingerson@providence.org • Michelle started her health care career over 25 years ago as a CNA at Molalla Manor as a senior in high school. After working in facilities for a couple years while attending the UofO, she found home care to be her passion. After graduating with her BA, she was promoted to field staff supervisor, and since then has taken positions with progressively more responsibility. After attaining her MBA in Healthcare, Michelle was mentored by the retiring Director of Willamette Falls Hospice and was promoted to that position. Through the merger between Willamette Falls Hospital and Providence Health and Services, Michelle eventually transitioned to her current role with Providence Home Services. Michelle.bearden@providence.org • Disclaimer: we are not nurses 

4. Learning Objectives • Participants will learn • the results of research about breathlessness at the end-of-life • alternatives to oxygen for the palliation of shortness of breath, including the treatment of anxiety • about our hospice’s journey to increase staff, patient and family confidence around non-use of oxygen, supplanted with use of more effective comfort measures that are currently less well understood, especially by the general public • strategies to assist participants in translating the information learned into program implementation within their representative hospices

6. Definition • Dyspnea - is shortness of breath, difficult or labored breathing, air hunger and the subjective symptom of breathlessness. Dyspnea usually connotes serious disease of the airway, lungs, or heart.

7. Definitions, cont. • Orthopnea - occurs when lying flat, often a late manifestation of heart failure • Platypnea-Orthodeoxia syndrome - relieved when lying down, and worsens when sitting or standing up, which could be related to pulmonary, hepatic or cardiac diseases

8. Definitions, cont. • Trepopnea - sensed while lying on one side but not on the other, it results from disease of one lung, one major bronchus, or chronic congestive heart failure

9. Definitions, cont. • Eupnea - normal respiration

10. Dyspnea and the Hospice Patient • Georgann’s Patient Story

12. Oxygen Usage Data • Michelle’s Story • Literature on the benefits and costs of oxygen use at EOL • Data and our experience

13. Literature Search on Palliation of Breathlessness at EOL First question we asked when performing our literature search: Does the administration of oxygen relieve symptoms at end of life for patients who experience shortness of breath even when oxygen saturation levels (O2sats) are within normal range?

14. Literature Search on Palliation of Breathlessness at EOL • Studies have only found symptom relief for moderate or greater Dyspnea • “Oxygen…is of disputed value when breathlessness is not accompanied by hypoxia.” (Quinn-Lee, Gianlupi, Weggel, Moch. Mabin, Davey, Davis & Williams, 2012) • “Less clear benefits from oxygen administration have been identified across samples of patients with advanced illness, particularly in the face of normal oxygenation.” (Campbell, Yarandi & Dove-Medows, 2013). The authors went on to say, “most patients near death receive no palliative benefit from oxygen.”

15. Literature Search on Palliation of Breathlessness at EOL • “Palliative oxygen is routinely prescribed for a number of reasons, including to ‘do something.’ A growing body of evidence supported by these findings suggests that oxygen is a useful palliative intervention when the patient is experiencing distress and is hypoxemic. There is no support from these findings for the initiation or continuation of oxygen therapy when the patient is comfortable and near death.” (Campbell et al., 2013)

16. Literature Search on Palliation of Breathlessness at EOL Second question we asked when performing our literature search: What are some of the negatives to administering oxygen at the end of life?

17. Literature Search on Palliation of Breathlessness at EOL • Interferes with talking, coughing and eating • Discomfort • Irritating to nose & ears (nasal cannula) • dryness can cause nose bleeds • Mobility restriction & fall hazard (continued on next slide)

18. Literature Search on Palliation of Breathlessness at EOL • Noise & heat from machine • Expensive • Often the top one or two most expensive categories of home medical equipment provided by Hospice • Hospices are potentially put in the role of taking away the patient’s oxygen if the patient is discharged from hospice. • Fire hazard(continued on next slide)

19. Literature Search on Palliation of Breathlessness at EOL • Decreased Quality of Life • “it has been reported that the potential restriction on mobility imposed by using the oxygen device may be an important factor that counterbalances any improvement by using supplemental oxygen on quality of life. Quality of life has been reported not to improve when patients received oxygen therapy for 6 months while using an oxygen concentrator.” (Criner, 2013) • “oxygen is not a benign intervention. Quality of life may be limited as a result of functional restriction from tubing, tanks, or concentrators; there may be psychological distress in being reliant on a machine.” (Uronis, Currow, McCrory, Samsa & Abernethy, 2008)

20. Literature Search on Palliation of Breathlessness at EOL • May Prolong the Dying Process

21. Research on Palliation of Breathlessness at EOL “The common thought that a breathless patient needs oxygen for comfort may be based on attitudes and beliefs held by practitioners, patients, and family members rather than scientific evidence or expert knowledge.”(Quinn-Lee et al., 2012)

23. Our usage & experience • Our Primary IDG committee created a new staff tool in July 2013, Use of Oxygen at End of Life • Oxygen for patients with O2 sats below 92% at rest may not be any more beneficial than moving the room air with a fan • Ordering oxygen for a patient with an O2 sat of 92% or greater at rest requires a consultation with one of our hospice physicians and authorization from a supervisor or manager • Non-pharmacological interventions are recommended instead, such as raising the head of the head, repositioning the patient, adding a fan to the room or opening the window • Opioids, such as Morphine, and benzodiazepams, such as Lorazepam, are recommended for relieving breathlessness

25. Our usage & experience increase! no change

26. Breathlessness Cycle

27. Creating Patient/Family Education • Creating a patient/family teaching handout for staff use • For all patient care staff

35. Additional Information • Sometimes patients can feel air hunger due, in part, to bloating: • Often treated with simethicone or Gas-X

36. Breathlessness Sample Scripts • In hospice we use many medications to address comfort and oxygen is one of many measures we use. However, oxygen will not help shortness of breath for patients with normal oxygen saturations other than by the feeling of air blowing. There are several other ways to help you feel more comfortable when you are experiencing shortness of breath. I have some information about those ways to share with you.

37. Breathlessness Sample Scripts • Have you ever felt shortness of breath? Breathlessness can be very frightening. • Shortness of breath is physiological. Anxiety increases shortness of breath and relaxation decreases it. In the past, a standard method of treating breathlessness was by using oxygen tanks or concentrators. Research has concluded that use of oxygen does not help people with normal oxygen saturation. (continued on next slide)

38. Breathlessness Sample Scripts • Many people near the end of their lives have shortness of breath, and many have normal oxygen saturation levels. There are a number of ways to relieve breathlessness and they deal with reducing activity – sitting down, changing position, cooling the room, using a fan, relaxing or meditating or praying, using oxygen if your oxygen saturation level is below 90%, and taking medications – such as roxinol which works very well for most people. Roxinol/morphine helps by relaxing muscles of the lungs so people feel like they breathe better. It is a wonderful medication when used as prescribed by the doctor and explained by your nurse. Let’s look over the handout that I brought. (continued on next slide)

39. Breathlessness Sample Scripts • If asked about oxygen, explain that for people who do not need it, it serves to move air around and may force relaxation once a person is seated. The downside of oxygen is tubing, discomfort around the nose and ears, a fire hazard. There is much to be said for not using oxygen.

41. Definition • Anxiety:An unpleasant emotion triggered by anticipation of future events, memories of past events, or ruminations about the self. • (This is not the DSM-5 definition that refers to anxieties lasting six or more months.)

42. Relieving Anxiety • Social Workers and Chaplains • Guided imagery • Acupuncture • Massage • Music • Music Thanatology • Presence • Aromatherapy • Threshold Choir

44. Use of Aromatherapy • We have used lavender and chamomile oils to relieve anxiety and patients have reported that this helped them. Another useful oil is ginger which when put into the aroma stick, is beneficial to manage episodes of nausea. Our community team have also used the aroma sticks and found them to be effective. • Melody Hornblow, Activity Co-ordinator, Day Hospice. • Willen Hospice is situated in Milton Keynes and provides specialist care for adults with life-threatening illness. The services provided include; In-Patient Unit, Day Hospice, Community Care Team, Social Care and Lymphoedema Clinic. The Day Hospice operates 3 days a week, on these days patients are offered a range of complementary therapies.

46. Oxygen Usage – where we are now

47. Relieving Anxiety • Threshold Choir • Kate Munger founded the Threshold Choir organization in 2001 in El Cerrito, California. She teaches workshops nationally about how to sing to the ill and dying. Today, 100 Threshold Choirs exist in the U.S., Canada and Australia.

48. Puff: Not-so-magical Strategies for Breathlessness Questions?

49. And Puff that mighty dragon, he ceased his fearless roar Thank You

50. References, p. 1 of 3 • Booth, S., Moffat, C., Burkin, J., Galbraith, S. & Bausewein, C. (2011) Nonpharmacological interventions for breathlessness. Current Opinion in Supportive and Palliative Care 5(2), 77-86. • Bausewein, C., Booth, S., Gysels, M. & Higginson, I. (2008) Non-pharmacological interventions for breathless in advanced stages of malignant and non-malignant diseases (Review). The Cochrane Database Syst Rev. 16(3). • Campbell, M., Hossein, Y. & Dove-Medows, E. (2012) Oxygen Is nonbeneficial for most patients who are near death. Journal of Pain and Symptom Management 45(3), 517-523. • Cheung, W. & Zimmermann, C. (2011) Pharmacologic management of cancer-related pain, dyspnea, and nausea. Seminars in Oncology 38(3), 450-459. • Cranston, J., Crockett, A. & Currow, D. (2013) Oxygen therapy for dyspnoea in adults; Cochrane Database Systemic Review 11. • Criner, G. (2013) Ambulatory home oxygen: What Is the evidence for benefit, and who does it help? Respiratory Care 58(1), 48-64. • Dudgeon, D. (2006) Dypsnea, death rattle, and cough. In Ferrell, BR & Coyle, N (Eds), Textbook of palliative nursing (pp. 249-255). New York: Oxford University Press (2nd ed.). • Fine, P. (2008) The hospice companion: Best Practices for Interdisciplinary Assessment and Care of Common Problems During the Last Phase of Life. (pp. 50-56) New York: Oxford University Press.