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2014 PPE Disclosure Statement

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Presentation on theme: "2014 PPE Disclosure Statement"— Presentation transcript:

1 2014 PPE Disclosure 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. On the theme of Puff, the dragon. . . we thought you may enjoy this Larson cartoon. The caption reads, “The real reason dinosaurs (also referred to as dragons) became extinct”. There they go, puffing away.

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

3 Bios Disclaimer: we are not nurses 
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. 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. Disclaimer: we are not nurses  I am Georgann Wingerson and this is Michelle Bearden. We both work for Providence Hospice. I am a hospice social worker. It is a second career which I love. I have, most of my adult life, worked in health care as a nursing home administrator, in customer service in a PPO and for Cedars Sinai Medical Center. Before returning to school to become a MSW, I worked writing/administering contracts for Providence Health Plan. Now, Michelle. I started my healthcare career 25 yrs ago in high school, working as a CNA in a nursing home. After almost two years at nursing homes, I moved over to Home Care, where I’ve been ever since, hospice exclusively for the last 12 years. The patients I learned the most from and who’ve kept a place in my heart have been the hospice patients. Just to give you an idea of where I’m coming from, I wanted to share a few things I’ve learned over the years, such as … any date on the calendar can be circled and declared Christmas. It IS OK to enjoy disco music. Sometimes your closest family member is not related by blood. We should treasure every day as if it were our last.

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 Georgann: Here are the learning objectives that we set out for our presentation on shortness of breath. 1. Participants will learn about our research regarding palliative treatments of breathlessness at the end of life. Well, sorry to tell you, there is little research that demonstrates new or recommended treatments. We have a list of articles that we reviewed for this presentation, so for those of you who want to know about pharmaceutical titration, refer to our references. So why is there a dearth of research regarding shortness of breath and anxiety at the end of life. From what I have read, this is, in part, because there is little funding. There is not a lot of money to be made from the studies of pharmacological and non-pharmacological palliative care treatments at end of life, so there aren’t many studies, there are not many good studies, and much of what we read was from research in England, Europe, or Australia. 2. Participants will learn about the alternatives to oxygen for the palliation of shortness of breath, including the treatment of anxiety. There is really no alternative to oxygen if that is what the patient needs. But, there are a variety of palliative treatments, pharmacological and non-pharmacological that are helpful, sometimes instead of oxygen if the patient isn’t hypoxic, and sometimes in addition to oxygen, and we will detail them. Michelle: 3. Our biggest impetus for being here today is this third learning objective. We wanted to share with all of you our journey this past year to change staff and patients’ understanding of effective comfort measures for shortness of breath. 4. And, as stated in our fourth learning objective, we also wanted to share how we’ve implemented our program to hopefully allow you to take our best ideas and share with your hospices.

5 On the theme of Puff, the dragon
On the theme of Puff, the dragon. . . we thought you may enjoy this Larson cartoon. The caption reads, “The real reason dinosaurs (also referred to as dragons) became extinct”. There they go, puffing away.

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. First some definitions: shortness of breath, the subjective feeling of breathlessness. Air hunger is dyspnea. The term has a Greek derivation and means “hard breath”. 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 There are different types of dyspnea, and I am going to mention 3 about which I am aware. Orthopnea (or THOP ne a), is shortness of breath (dyspnea) which occurs when lying flat, causing the person to have to sleep propped up in bed or sitting in a chair. It is the opposite of platynea (pla TIP ne a). Platypnea-Orthodeoxia (pla TIP ne a – or tho de OX i a) syndrome refers to shortness of breath (dyspnea) that is relieved when lying down, and worsens when sitting or standing up.

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 Trepopnea (tre pop-ne´ah) is dyspnea that is sensed while lying on one side but not on the other (lateral recumbent position). It results from disease of one lung, one major bronchus, or chronic congestive heart failure. And we will talk more about that later. Finally, what most of us in this room have, normal respiration. A prize for the first one to answer with the medical term for normal respiration, normal breathing. It is eupnea (yuup NE a) Yea! Here is your prize. Good for you.

9 Definitions, cont. Eupnea - normal respiration
Would that we looked as good as our meditating, deep breathing model here getting a little puff from Puff. There are lots of other breathing conditions, but I think I have covered the main types of shortness of breath.

10 Dyspnea and the Hospice Patient
Georgann’s Patient Story Whatever type of dypsnea they have, most of our patients have it, and it is very frightening for them and their families. I have been interested in shortness of breath for awhile. I am reminded of a conversation that I had this year with a recently retired nurse who was caring for her mother who was new to hospice. Her mother, the patient, had a bad night. Her daughter told me that her mother was very short of breath, was very frightened, that she got up to help her and did so by putting O2 on her. During the course of the conversation, I asked the daughter what her mother’s O2 saturation was, and she said 91%. I did not say anything at the time, the patient’s daughter appeared to be somewhat embarrassed, then quickly defended her actions of O2 use, noting that her mother felt better. Well, I figure that her mother did feel better. The O2 helped her feel safe. One of our nurses joked with me that we should ask all caregivers to provide a glass of water to the patient right before bedtime. This would ensure that the patient would need to get up, call for help, and possibly, a breathing crisis would be averted by the caregiver’s action (which we will mention later in this presentation) that may serve to prevent some episodes of shortness of breath.

11 This cartoon reminds me of some patients’ comfort, their feeling of safety with using O2. I love the snorkel – it reminds me of the oxygen tubing and canula. The caption reads, The monster snorkel: Allows your child to breathe comfortably without exposing vulnerable parts to an attack. Now, to Michelle, and her more personal interest in shortness of breath.

12 Oxygen Usage Data Michelle’s Story
Literature on the benefits and costs of oxygen use at EOL Data and our experience This is a little outline of what I’ll be sharing. First I’ll be sharing a personal story, then I’ll share…” “, and I’ll share some “ “ My story is from the week before Christmas My dad spent 8 days in the hospital with a sudden illness that he didn’t recover from. Halfway through his hospital stay, he was moved to ICU and they started oxygen. In those last few days the most annoying things to him were the O2 sat monitor on his finger and the oxygen nasal canula on his face. When he was awake he was constantly picking at them and trying to pull them off. He hadn’t been complaining of shortness of breath and no one ever asked my Mom whether she wanted oxygen for Dad or told her what the benefits and drawbacks would be so she could make a decision – they just did it. When I saw how annoying it was to him, and we knew at that point he wasn’t going to recover, I wanted to ask my Mom about removing them, but I had other difficult conversations to have with her, such as deactivating his implanted defibrillator. The next day he was moved to a med/surg room under comfort care orders as at that point we knew he was down to hours and my Mom wasn’t prepared to take him home. In his final hour I mentioned to Mom that the oxygen could probably come off, but she wouldn’t hear of it. Even after he had taken his last breath she wouldn’t let me remove it. Me, I wanted to see him without the tubes.

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 (O2 sats) are within normal range? Now, back to our study and why we’re here. When doing our literature searches the main question we were trying to answer was “Does… “. We wanted to see if research had been done that could answer this.

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.” What we found was that yes, studies have been done, but no measurable benefits from oxygen were seen that were any greater than other interventions. “ “

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? Ask the audience – give prizes to the first 5 responses

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) Read any that they miss…

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) Read any that they miss…

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) Overall decreased quality of life “ “

20 Literature Search on Palliation of Breathlessness at EOL
May Prolong the Dying Process This one came up from a couple of the articles we reviewed. Depends on situation whether this is a negative or not.

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) This slide encompasses why we’re here, why this is a topic for discussion. “ “ Beliefs and attitudes are often driving interventions, but they should be based on research and best practice. What’s needed is education and a paradigm shift.

22 Oxygen is seen a cure-all… wouldn’t it be great to have a pill that neutralizes excess caloric intake, on-line shopping sprees and so on!

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 Our hospice’s journey started last summer, A couple factors led us to look more closely at oxygen. One being cost and the belief that we were likely providing oxygen to patients who were not really benefitting from it. The other was the DME competitive bidding that occurred for DME companies to remain providers through Medicare. Our Providence HME department started the competitive bidding process, but then pulled out when they realized it wouldn’t be a sustainable business model. So, we learned that this meant for our hospice patients who were being discharged and who would still have Medicare as primary off of hospice, they would have to transfer DME companies and the new company would need those patients to qualify for O2 under Medicare. We were seeing that a high percentage of our discharged patients with oxygen would not qualify under Medicare, putting us in the position of either removing the oxygen or having the patient pay privately. In response, our IDG Committee created guidelines for staff to use. These guidelines were distributed to all of the nurses and social workers. We anticipated that these new guidelines would curb the use of oxygen. [hand out guidelines]

24 We didn’t have high goals, but we did expect improvement. Here’s “ “
Can you imagine someone walking around in a t-shirt that says: I survived conjunctivitis or I can read a bus schedule Or how about a cake that says: Happy tattoo removal No loitering arrests for one year! Or a greeting card that says: I’m so glad you’re not an arsonist!

25 Our usage & experience increase!
Maybe we should have set high goals, so maybe we wouldn’t have actually regressed! For this statistic I counted the total number of concentrators we rented in a given month (whether for one day or for a whole month) and divided that number by our average daily census for the month. So, let’s say your hospice rented 50 concentrators one month, and during that month your ADC was 100, your concentrators per ADC would be 0.50 – which is what we had last July, before the new guidelines went into effect. We found in January that our usage had actually increased by 8%! I worked over the spring of this year to find a few hospices across the country who would be willing to benchmark their concentrator usage data with us. I found a few interested, but when it came time to actually send to me their data, they as yet have not done so. If anyone here wants to benchmark data quarterly, please let me know and I can set up some data sharing. We would share the statistic, not ADC, as I know that info is held close to the chest for most hospices. If interested, please see me after to get my card. I’m going to turn this back over to Georgann who’s going to talk about what we’ve done since January to widen our scope and bring the staff alongside our efforts. I’ll come back near the end to show you whether we’ve made any change to our usage since January…I’m sure you’ll be on pins and needles. no change

26 Breathlessness Cycle Some of our patients, often those who don’t want anything to with social workers or chaplains, have a considerable amount of shortness of breath. They want whatever relief they can find, and a traditional and often, desired, treatment is oxygen. Dypsnea is exacerbated by anxiety. I like this chart other than, I think, for our patients, it starts with the physical symptom of shortness of breath. One has shortness of breath, becomes anxious, dypsnea increases, breathing becomes faster, breathing muscles tire, the patient becomes panicked. I have been thinking about this for awhile. In our hospice, the nurses are usually the ones who present information about dypsnea and how to minimize the symptoms, and they do a fine job of this, but I feel that all disciplines who work in hospice can be helpful with reduction of anxiety. Too, I have found that many of our patients are not interested in anything non-nursing or non-caregiving. Patients are quite willing to see our nurses or CNAs for baths, but, goodness, they do not want to see the chaplain or social worker, and, of course, they would never take hard drugs. I wondered if social workers and chaplains could be more involved with these patients if we presented information to them that they felt was concrete, substantial, then, if rapport is developed, delve into the subject of anxiety.

27 Creating Patient/Family Education
Creating a patient/family teaching handout for staff use For all patient care staff Breathlessness is a direct and tangible concern of patients. So, I did research, wrote a piece about breathlessness, and with a lot of help (from my husband as well as fellow hospice workers) regarding formatting and free internet pictures, put together an easy to read handout on what to do when patients are short of breath. It is not a training tool for staff; it is a patient handout, meant to educate. It is something for patients and families to put in their toolkits. So we completed the handout and gave it to one team on August 1 to try out with patients. The nurses consistently used the handout, the other professionals – much less so than I had hoped. Patients appeared to be receptive, per the nurses. And throughout August and September, we revised the handout.

28 This cartoon reads: Sticks and stones may break my bones but words will stay with me forever as they sit inside me, getting turned over and over, being blown completely out of proportion. I, probably, took on the role of the speaker in the cartoon. I really did not want to change some verbiage in the handout. For instance, I thought it would be helpful to note that if oxygen saturation levels were 90% and above, oxygen would not help. One of the nurses pointed out that families advocate for patients to have oxygen when patients are actively dying and, of course, the oxygen saturation levels are below 89% - so we took that out. The first page of the handout is reserved for nursing and medical means to palliate breathlessness. We start with this:

29 Breathlessness: What to do to relieve air hunger
Breathlessness: What to do to relieve air hunger. Many people on hospice experience breathlessness, shortness of breath also called dypsnea. It can be frightening and surprisingly, it is often not helped by using an oxygen machine (concentrator) or tank. What can you do about shortness of breath? We initially had this paragraph start with “Most people who are near end of life” which some social workers thought would be more frightening to patients than the recognition that our patients are on hospice. Next, we review commonly used medications and try to normalize the use for those who are concerned about using drugs.

30 Effective Medications: Use the medications offered by your nurse and prescribed by the doctor. When used as ordered, they can work wonders. (This statement is to normalize hard drug usage – for those patients who are fearful of addiction or have strong beliefs against using medications that are viewed as recreational.) Then we explain what opioids do to the body: Opioids (morphine and derivatives) relax the muscles in your lungs and compel calmness by altering the perception of air hunger. By dilating pulmonary blood vessels, they improve oxygen supply and reduce pulmonary congestion. Benzodiazepines (Lorazepam or Ativan) are also used to help reduce the feelings of breathlessness. For ALS patients, Midazolam or Versed is often helpful.

31 For some conditions, a machine called a nebulizer is used with medications or saline solutions to open and relax airways. Oxygen/O2 concentrators or tanks are used when your nurse determines that your dyspnea may benefit from the additional oxygen. We had discussions about the picture of the CPAP, nebulizer face mask, or O2 face mask, with the patient lying down vs sitting up – which is often the case with folks who use nebulizers. We decided to leave this picture in, that it could represent either nebulizer or O2 usage.   That is the first page.

32 Page 2, Enhanced techniques: Remind yourself to be calm
Page 2, Enhanced techniques: Remind yourself to be calm. Breathlessness often significantly increases when you are anxious. Find ways to relax and eliminate as many stressors in your life as you can. Your social worker and chaplain will be glad to assist you with relaxation techniques that may include guided imagery, visualization, music, and prayer. We did a lot of looking for free pictures of calm scenes, and we talked about verbiage. I wanted to use Non-Pharmacological, but, fortunately, we decided upon “enhanced”.

33 Slide 32: Pace yourself. If you are actively moving and are short of breath, stop your activity, sit down, recognize that you may not be able to do all you would like to do without taking breaks. If you are lying down, and you become breathless, change positions or allow someone to reposition you. Try raising your head and chest by using pillows, a bed that elevates, or a bed wedge. Try sitting upright and leaning forward on pillows. This is now my opportunity to talk about trepopnea (tre pop-ne´ah). Not everybody should be elevated as the illustration shows. Patients with trepopnea from lung disease prefer to lie on the opposite side of the diseased lung, as the gravitation increases perfusion of the lower lung. Increased perfusion in diseased lung would increase hypoxemia (oxygen deficiency in arterial blood), resulting in worsening shortness of breath. To maximize function of the healthier lung, the patient is best to lie on the side of the healthier lung, so that it receives adequate perfusion. Patients with chronic heart failure prefer to lie mostly on the right side, to enable a better blood return, whereby cardiac output is augmented. Before we go on, I have another question that will result in a few prizes. What are the items that a patient or family likely has in their homes that can be used to help with shortness of breath? Michelle has already mentioned a couple of these items.

34 Fans directed at the face or the side of the face, open window, cool compresses – wash cloths – all the help the patient stay cool and calm. I was afraid to use the word “chill” due to obvious implications, but I was encouraged to use it. So you can see, a lot of thought and participation by staff has gone into making this handout.

35 Additional Information
Sometimes patients can feel air hunger due, in part, to bloating: Often treated with simethicone or Gas-X We did not mention in the handout, bloat, not eating gas forming foods – which does not impact most of our patients who are not eating much of anything. Still they can be bloated – which we treat with simethicone or Gas-X. We also did not mention the use of lasix or furosemide for shortness of breath. I am considering including furosemide in a revision. I think we have space on the first page.

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. I am not going to read the 2 sample scripts (this slide and the next 3 slides) that we devised to help staff start the conversation, but they are important. We are hoping that staff uses the handout as an opportunity for a discussion, maybe 10 minutes spent on the handout, reviewing what the patient and family think and experience. If you purchased the thumb drive, you will get a copy of the scripts.

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.

40 We are getting to the part about anxiety
We are getting to the part about anxiety. Here we have a couple at the breakfast table and the spouse says: “I sent your worry beads out to be restrung”. Anxiety. First, a definition.

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.) Anxiety: Anxiety is an unpleasant emotion, triggered by anticipation of future anticipated events, or ruminations about the self. There is some research on identifying and treating anxiety at end of life, but not a whole lot of good research. There is more information about identification and treatment of depression with tricyclic antidepressants, SSRIs, and atypical antidepressants. For social workers, there is evidence that psychotherapy, motivational interviewing - exploring sustaining or changing and/or short term, problem solving therapy can help patients. Psychotherapy with a person who is facing impending death is different than with someone who is likely to continue living. Our therapy focuses on providing a nurturing, supportive relationship as our patients grapple with fears associated with dying. With short-term problem solving, we may help patients develop a list of problems that they want to solve, prioritizing the list, then determining a strategy. We use these therapies and strategies all the time.

42 Relieving Anxiety Social Workers and Chaplains Guided imagery
Acupuncture Massage Music Music Thanatology Presence Aromatherapy Threshold Choir What else can we do regarding anxiety, the anxiety caused by dying which is new, something we do only once in life, we cannot practice for it? How else can we treat anxiety caused by air hunger? Assuming that we can now talk about anxiety, it may be relieved with guided imagery, visualization, acupuncture, acupressure, music, music thanatology, presence, aromatherapy, massage, and possibly, Threshold Choir. There are studies about using all of these techniques to assist people at end of life. The problem is that the studies about these disciplines are small in number, have few participants, they may have few controls, basically the research is just not very good. All of these techniques/disciplines/approaches are, I believe, helpful, but they are, compared to pain and dypsnea relieving medications, expensive. They are all, except relaxation therapies that can be accomplished with a CD for guided imagery or visualization, they are all labor intensive, so, overall, they cost more if patient and family cannot learn and practice the techniques without the teacher, without the professional offering the complementary service. So massage, acupuncture, acupressure, music thanatology, aroma therapy are viewed as helpful, but we don’t know how long the treatments last. There is just not enough good research out there.

43 I should have, also, included laughter, though I did not read any recent studies on laughter, there are laughter clubs that are becoming popular. This is a cartoonist’s vision of aromatherapy. The first air freshener is Valium Bouquet: a no nonsense freshener that takes care of just about any problem. Followed by: the air freshener Prozac mist – light yet effective, perfect for everyday use, and thirdly, Thorazine Meadow - when you don’t want to fool around, reach for the meadow.

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. Having read a study on use of aroma therapy and massage at end of life, I was searching on the internet for pictures of aroma sticks. I found the following, a little blurb about an English hospice, Willen Hospice, that uses aroma therapy including use of aroma therapy sticks. The aroma therapy that I have read about has consistently noted the use of lavender, chamomile, or sandalwood essential oils.

45 Willen Hospice uses a device similar to the Vicks inhaler pictured
Willen Hospice uses a device similar to the Vicks inhaler pictured. I wonder if we tried using essential oil, aromatherapy sticks in a nebulizer, if this may be calming for some patients. Nebulizers are so inexpensive – around $15 per mo to rent, and for those patients who seem to need equipment, why not try a nebulizer with saline, oils, or medications. Now there is disagreement regarding the efficacy of using nebulizers with medication. I have read both pro and con, but it may be something that can work for some folks who just need to feel secure by having equipment.

46 Oxygen Usage – where we are now
Ta da! Improvement! From last July to this July we decreased our usage by 16%. And this is just the beginning as our patient teaching guide didn’t start going out to families until August. What happened between January and July was further education to nurses using the guidelines that were published in 2013, specifically targeted were the intake and referral nurses, the hospital liaison nurses and the admission nurses. Our hospice education coordinator and medical director got involved to spread the knowledge.

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. A relative new type of therapy, Threshold Choirs, are becoming popular. I thought you might enjoy seeing and listening to an example of a song performed by a Threshold Choir.

48 Puff: Not-so-magical Strategies for Breathlessness
Questions? Thank you for your attention. We have copies of the Breathlessness handouts if you would like a hard copy.

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), 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), Cheung, W. & Zimmermann, C. (2011) Pharmacologic management of cancer-related pain, dyspnea, and nausea. Seminars in Oncology 38(3), 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), Dudgeon, D. (2006) Dypsnea, death rattle, and cough. In Ferrell, BR & Coyle, N (Eds), Textbook of palliative nursing (pp ). 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 ) New York: Oxford University Press.

51 References, p. 2 of 3 Horne-Thompson, A. & Grocke, D. (2008) The effect of music therapy on anxiety in patients who are terminally ill. Journal of Palliative Medicine 11(4), Kamal, A., Maguire, J., Wheeler, J, Currow, D. & Abernethy, A. (2012) Dyspnea review for the palliative care professional: Treatment goals and therapeutic options. Journal of Palliative Medicine 15(1), Kissane. D. (2012) The relief of existential suffering. Archives of Internal Medicine 172(19), Kyle, G. (2006) Evaluating the effectiveness of aromatherapy in reducing levels of anxiety in palliative care patients: Results of a pilot study. Complementary Therapies in Clinical Practice 12(2), Miller, K., Adams, S. & Miller, M. (2006) Antidepressant medication use in palliative care. American Journal of Hospice and Palliative Care 23(2), Pickering, E., Semple, S., Nazir, M., Murphy, K., Snow, T., Cummin, A., Moosavi, S., Guz, A., Holdcroft, A. (2011) Cannabinoid effects on ventilation and breathlessness: A pilot study of efficacy and safety. Chronic Respiratory Disease 8(2), Polubinski, J. & West, L. (2005) Implementation of a massage therapy program in the home hospice setting. Journal of Pain and Symptom Management 30(1),

52 References, p. 3 of 3 Quinn-Lee, L., Gianlupi, A., Weggel, J., Moch, S. Mabin, J., Davey, S., Davis, L. & Williams, K. (2012) Use of oxygen at the end of life: on what basis are decisions made? International Journal of Palliative Nursing 18(8) Roth, A. & Massie, M. (2007) Anxiety and its management in advanced cancer. Current Opinion in Supportive and Palliative Care 1(1), Stringer, J. & Graeme, D. (2011) Aromasticks in cancer care: An innovation not be sniffed at. Complementary Therapies in Clinical Practice 17(2), Uronis, H., Currow, D., McCrory, D., Samsa, G. & Abernethy, A. (2008) Oxygen for relief of dyspnoea in mildly- or non-hypoxaemic patients with cancer: a systematic review and meta-analysis. British Journal of Cancer 98, Zerwekh, J. (2006) Nursing Care at the End of Life: Palliative Care for Patients and Families. (pp , ) Philadelphia: FA Davis Company. Zerzan, J., Benton, K., Linnebur, S., O’Bryant, C. & Kutner, J. (2010) Variation in pain medication use in end-of-life care. Journal of Palliative Medicine 13(5)


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