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Practice Support Program End of Life Learning Session 3 1.

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1 Practice Support Program End of Life Learning Session 3 1

2 Acknowledgements End of Life Practice Support Program Committees: Dr. Cathy Clelland, Chair, Sheila Balson, Andy Basi, Sherry Bar, Dr. Doris Barwich, Dr. Clifford Chan-Yan, Louise Donald, Dr. Ian Courtice, Dr. Romayne Gallagher, Dr. Neil Hilliard, Pamela Hinada, Dr, Bruce Hobson, Dr. Marcus Hollander, Judy Huska, Pauline James, Dr. Marnie Jacobsen, Dr. Helena Kadlec, Liza Kallstrom, Dr. Douglas McGregor, Dr. Chris Rauscher, Pat Porterfield, Della Roberts, Christina Southey 2 BC Hospice Palliative Care Association Learning Centre for Palliative Care: Hospice Palliative End-of- Life Primary Care Provider Education Project Fraser Health End of Life Care Program: Advance Care Planning initiative Gold Standards Framework (

3 Welcome back 3

4 Patient/Family/Community’s voice (10 minutes) 4

5 Report back (60 minutes) 5

6 Team Name:___________ Date:___________ PSP Storyboard template for End of Life 66

7 Team members – Team picture List team members and roles 77

8 Our team aim An aim template for team: We aim to improve _________(name of process or topic) in _____(location) so that _______ (a numerical goal), by ________ (time period) 88

9 Measures: Sample Practice Key MeasuresTargetBaselineCurrent results # of pts identified and placed on a registry % of pts on the registry that had an ESAS and or PPS (as appropriate) % patient on registry who have been given My Voice (or other) and had an ACP conversation % of patients on a registry with a collaborative proactive care plan in place Additional practice measures (only if additional measures used) 99

10 What did we do? Summary of what you did (if you tested multiple changes in the action period pick your top 1 or 2 to share) 10

11 Study What did you learn? Did things change from baseline in your measures? 11

12 Graphs 12

13 Patient story 13

14 Provider story 14

15 Summary of current status Successes: Challenges and/or barriers: What we are planning to test next: 15

16 All teams share! 16

17 End-of-life symptom management & addressing the question of hydration (20 minutes) Based on materials from: Mark Turris RN, MSN, CHPCN (C), “Symptom Management in the Last Days to Hours of Life”, Vancouver Home Hospice Consult Team Pat Porterfield, Presentation on “Food & Fluids”, Victoria Hospice Medical Care of the Dying Course Fraser Health Hospice Palliative Care Symptom Guidelines 17

18 Physical symptoms experienced at end- of-life 1.Pain 2.Shortness of Breath 3.Nausea & Vomiting 4.Agitation 18

19 Physical symptoms/changes experienced at end-of-life (continued) 5. Fatigue 6. Sleepiness 7. Inability to Swallow 8. Loss of appetite 9. Dehydration 10.Incontinence 11.Confusion 19

20 Actively Dying In the context of a progressive life-threatening illness 1.Low level of consciousness – sleep with occasional periods of alertness or sleeping continuously 2.Changes in breathing patterns – apnea, rapid shallow breathing, Cheyne-stokes, &/or moist respirations (respiratory congestion) 3. Incontinence of urine &/or feces 4. Color & temperature changes – cyanosed nail beds, pallor (face), coolness of extremities 20

21 Managing pain at End of Life 1.Most common is use of sc meds, either continuation of previous opioid or initiation of low dose of hydromorphone or morphine 2.Transdermal meds can be continued, but usually available in too high a dose to initiate at this time 3.Sublingual & sub-buccal 21

22 Normal respiratory changes Mouth breathing, therefore dry mouth Provide mouth care with a soft tooth brush and water, plus non-petroleum gel to lips with turns or care 22

23 Respiratory secretions – avoid unnecessary fluids or deep suctioning Gurgly respirations – saliva over vocal chords Glycopyrrolate mg sc q6-8h regularly; doesn’t cross Blood Brain Barrier Atropine eye drops s/l or mg sc q4h regularly & prn Scopolamine sc mg q4-6 h reg & prn Respiratory congestion 23

24 Dyspnea “ Opioids, Opioids, Opioids “ Likely work through opioid receptor, same as for pain Often very low doses help, i.e. Hydromorphone 0.5mg s.c. q4h regularly and 0.1 mg q 30 min prn Poor evidence for inhaled opioids 24

25 Dyspnea (continued) Nozinan: starting dose 2.5 to 5 mg q8h and titrate to effect. Start low to test tolerance as wide variation in patient response. Elderly patients generally respond better to nozinan than benzodiazepines. Benzodiazepines: Lorazepam 1-2mg q4h sl/sc, midazolam intermittently or csci 1-4 mg/hr for for severe dyspnea & anxiety Non-drug measures – fan, open window Oxygen-if available, esp. if pt known to be hypoxic & oxygen has assisted in the past, and if does not increase restlessness; in imminently dying phase, do not monitor O2 sats & may remove O2 as death approaches & dyspnea no longer a concern 25

26 Terminal restlessness Pt. unconscious and moving about in bed Common - usually multifactorial – system failure, infections, pain, full bladder, etc. Rule out any physical causes such as: pain, urinary retention, or constipation. If all physical causes ruled out – may be psychological/existential If cannot be reversed, needs to be treated pharmacologically 26

27 Terminal restlessness (continued) Neuroleptics first choice for restlessness & agitation  Nozinan (methotrimeprazine) mg sc q4-8h and titrate,  Haloperidol mg sc q4-8 h Benzodiazepines: lorazepam 1-2 mg sl/sc q4h prn on an adjunct basis – a Midazolam continuous sc infusion 1-4 mg/hr via CADD Pump for severe restlessness/agitation 27

28 Food & fluids at end of life Useful questions to ask in assessing withdrawal from food & fluids during the illness: Is the reduction in intake appropriate to the phase of the illness? Cancer treatment or palliation? Importance of performance status. Consider cachexia/anorexia syndrome Is the patient’s mood/relationship with significant others normal? Is the patient satisfied with their ability to eat and drink? If focus is palliation, this is most important. 28

29 Fluids within the terminal phase Preference for oral sips and good mouth care If concern re the need for hydration in other forms such as hypodermoclysis or IV, discuss family’s understanding & expectations: withdrawing from food and fluid is a common aspect of the dying process parenteral therapy is not nutrition reduced food/fluid is not uncomfortable thirst can be addressed with good mouth care; hydration does not prevent thirst 29

30 Burdens of hydration Increased fluid can contribute to symptoms such as edema, ascites, resp. congestion, nausea & vomiting Complexity and discomfort associated with administering fluids may increase agitation and create a need for restraint (chemical or physical) May affect where the patient dies Increased need to void Dehydration may act as a natural anesthetic May prolong suffering/dying rather than living 30

31 Benefits of hydration Reduces cognitive impairment; may improve delirium/terminal agitation at the end of life esp. if related to neurotoxicity, hypercalcemia May prolong dying/survival (which can be seen as helpful if pt/family waiting for an event etc.) May fulfill pt/family expectations Can be initiated as a trial 31

32 Resources for family to help with understanding the dying process Patient education materials such as  Booklet: Preparing for the death of a loved one  Caregiver’s resources  Virtual Hospice website “When death is near” article 32

33 GPAC Palliative Care Part III: Grief and Bereavement (25 minutes) 33

34 Is this a good death? Who decides? US Institute of Medicine (1997): “One that is free from avoidable suffering for patients, families, and caregivers; in general accord with patients’ and families wishes; and reasonably consistent with clinical, cultural, and ethical standards.” 34

35 Patient perspectives: A “good death” Pain and symptom management. No prolongation of dying. Sense of control:  Clear approach to decisions and roles. Strengthening relationships: – “Doing for others”; not a burden. Continuity of self: – Before, during, and after illness. Meaning and completion. Life review, purpose and meaning. 35

36 Preparations for death Education and support for caregivers/family. You may need to prepare, guide, and interpret the experience. Dialogue about dying and preparations that need to be made. People who need to visit (and those who don’t). Issue of “unfinished business”. Funeral plans/wills. ANTICIPATION is essential 36

37 Explaining the dying phase and preparing the family.. Patient withdrawing from world around them Refusing tablets, food and drink or basic nursing care (need to exclude obvious clinical depression) Decreased appetite, decreased oral intake Decreased circulation, mottling, tachycardia Changes in breathing patterns with respiratory congestion (trapped secretions) or periods of apnea. Changes in level of consciousness Occasionally confusion, agitation, delirium Changes in perception: Awareness of “other”. 37

38 Can the family do this? Practically?  Elderly couple.  Singles.  Confusion/ incontinence/costs. Psychologically?  Mental health or addiction issues.  Out of keeping with family’s expected role or usual activity. 38

39 End of Life care check list for likely home death Points to consider when patients enter the dying phase:  Reconfirm a patient's goals of care, preferred place of care, what to do in an emergency.  Connect with home nursing (already in place)  Ensure that required forms are completed (No CPR and/or Notification of Expected Home Death).  Discontinue non-essential medications. 39

40 End of Life care check list (continued) Arrange for subcutaneous (SC) / transdermal medication administration or a drug kit to be placed in the home when a patient is no longer able to take medications by mouth. Arrange for a hospital bed +/- pressure relief mattress. Arrange for a Foley catheter as needed. Leave an order for a SC anti-secretion medication (e.g., atropine, glycopyrrolate). 40

41 Useful websites When a home death is preferred: 41

42 If home death not an option……… Identify alternatives in your area. If hospice  May differ in each Health Authority but will require involvement of palliative care team and clarification of goals of care (No CPR; No dialysis; prognosis < 3 months; no IVs; no further acute interventions).  Per diem cost (~ $30/day).  More stable re symptom management.  Private rooms and support for families.  Do you need a back-up plan? 42

43 At the time of death Management of terminal symptoms. Support, with all team members, including spiritual care Acceptance of dying as a normal process. Acknowledge the death Patient/family as the unit of care. Effective communication Check with family about all practical aspects 43

44 What equips GPs to give quality care in the last days of life? Strong relationships with Community Nurses and local palliative care teams. Good access to these resources. Shared clinical practice guidelines. Adequate remuneration for the time intensive nature of the work. Availability and familiarity with local “medication kits” or pharmacy arrangements. 44

45 Supporting grief and bereavement 45

46 Definitions Bereavement: the loss of a significant person and also the period of adjustment for the bereaved after the loss. Grief: the normal response to the loss of someone or something precious. Mourning: the social expression of grief after a death, associated with rituals and behaviours within the appropriate religious and cultural context. 46

47 Classes of grief Typical (Normal) Anticipatory Complicated Disenfranchised Unresolved 47

48 Understanding normal grief and how to support it 85% of grief experiences follow a normal pathway - it’s not about fixing it. In the context of a death, grief is a complex lifelong process that involves transforming a relationship rather than detaching from it. We all grieve differently - allow for diversity. It often gets worse before it gets better. You can’t prevent grief, but you can try to develop elements of resilience. 48

49 Understanding normal grief and how to support it (continued) Lifestyle Management –What is helpful for them –“Homework” Education –Normalize the process not “going crazy” –What to expect –What is helpful –Giving hope –Key phrases –Clichés to avoid –Resources Pharmacology 49

50 Communication strategies to support grieving Use the deceased’s name. Acknowledge the death – “I am sorry James is gone”. Talk about the deceased and memories, ask about “What are you remembering about James today?” Bring closure to the death “Do you have questions about James’ final illness or treatment?” Talk about grief feelings: “How has James’ death affected you?” 50

51 Key phrases “I am sorry” “It must be hard for you” “What would be most useful right now?” “Do you want to talk about it?” “Do you have someone you would like me to call?” “What do you miss most about James?” “What would you like me to do for you?” “What are your supports?” 51

52 Clichés to avoid “ I understand” or “ It’s for the best” “There was a reason” or “ It’s God’s will” “I know how you feel” “Time heals” “You will get over it” Avoid giving examples of those who are “worse off” Disallowing patient's feelings “ You should be getting over this by now” Giving early advice 52

53 Complicated grief Need to recognize early because:  Symptoms of complicated grief post loss are highly predictive of impairment and complications at 13 and 24 months post loss.  Rate of depression is 15-35% during the first year after loss of a spouse.  Suicide risk especially after loss of a child, loss of a spouse (older men) and sudden traumatic loss.  Higher rates of morbidity, mortality, health care utilization, alcohol, tobacco, sedatives and impaired immune function. 53

54 Resources Every member of staff should know how to access. Handouts / leaflets. BC Bereavement Helpline and other counseling/ grief support resources. Local hospice society. Legal issues/ custody issues / public guardian and trustee Specialist areas – children, teenagers, mental health and addictions. 54

55 Practical tips for the office An immediate phone call to family/ caregiver. Inform and debrief with all staff in the office. Send a card – some staff may want to write something too. Ensure all appointments are cancelled. Phone CHNs to thank and debrief. A follow up visit at weeks. Another at 6 months. 55

56 Billing criteria for new incentive payments (10 minutes) 56

57 Case study – Mr. James Lee Mr. James Lee is a 74 yr old retired electrician. Has a history of COPD, hypertension and was diagnosed with Prostate cancer 6 yrs ago (at age 68 yrs). Followed by both an urologist and a radiation oncologist and maintained on hormone therapy. His COPD has been managed in a shared care manner with a respirologist. Every fall you have undertaken a review of his COPD Action plan and this has kept him fairly stable COPD CDM 57

58 Office visit Last year, (5 yrs after the original diagnosis) James indicated that he was having pain in his back and shoulder. The radiation oncologist organized radiation for pain relief and coordinated changes in hormone therapy; the radiation relieved the pain initially Office Visit 58

59 Community patient conferencing Fax your request to the oncologist and he calls the next day re: some interim management and development of a plan to manage his symptoms. Communicate this info to James by phone. Total GP time for conferencing 20 minutes Community Patient Conferencing Example for specialist: Oncologist billing code (non-urgent up to 1 week) 59

60 Counseling visit for patient At the next appointment, you discuss the Advance Care Plan and undertake counseling James on the outlook of his prognosis and his related anxieties – 25 min counseling visit Office Counselling 60

61 Urgent advice James is feeling quite poorly. You decide to urgently consult his respirologist on options for management in the community Respirologist calls you within 20 minutes and you discuss James’ current status 17100Office Visit Urgent (<2hr) Telephone advice from Spec/GP with spec training Respirologist billing code for the urgent telephone advice 61

62 Office counseling for family members You arrange a meeting with the daughter to discuss her concerns. You undertake counseling with her that takes 30 minutes Office Counselling (for daughter) 62

63 Daily MRP care, discharge planning fee When you are not on call, there is a decline: hospital in respiratory failure. He is seen by the respirologist on call in consultation. James remains in hospital 5 days. A 30 minute discharge planning care conference. You providing MRP care daily and he is first patient seen each day; respirologist support Hospital acute care visit X 5 (Daily MRP care) First visit bonus X 5 days Discharge Planning care conference X 2 units 63

64 Palliative care planning fee James is now ready for referral to BC Palliative Care Benefits Plan and a Home Care Referral for assessment of the home. Discuss a safety net. Complete BC Palliative Care Benefits Plan referral and the No CPR form. 30 min palliative planning visit Office Visit Palliative Care Planning Fee 64

65 Community patient conferencing fee You contact the Home Care nurse to discuss the likely trajectory and anticipated events. You and the nurse discuss the care plan, agree on channels of communication and ensure the MOA is aware of these priority arrangements. 15 minutes total conferencing time Community Patient Conferencing 65

66 House call Joint visit with the Home Care Nurse and assess their current goals of care and capacity to remain at home. Following the visit, you and the Home Care Nurse review and revise the plan of management based on input from James and his family – 20 min Community Patient Conferencing House Call 1X200 Out of office age appropriate visit fee for additional pts seen at house call 66

67 Support of home care nurse Home care nurse agrees to call you at least weekly regarding the situation and you decide to visit every couple of weeks. Plans are made for an expected death at home Advise about patient in community care Home Visit 1X200 Out of office age appropriate visit fee for additional pts seen at house call 67

68 Other fees / Terminal care facility visit (depending on patient Dx/condition only regardless if in “palliative bed” or not - acute/LTC/hospice) Urgent LTC visit 0800 – 2300, 7 days/wk , +/ Routine long term care visit , out of office visit Specially called to see in acute care or hospice / / Acute care visits Facility Patient Conferencing. 68

69 Continuing the improvements in your local community (30 minutes) 69

70 You’ve had a head start! The involvement of families and community members in your improvement work will help you sustain  More partners in care  Accountability and encouragement from team mates  Maximizing community and family support 70

71 We can all work as one to continue improving changes in our practice and community! 71

72 Table Discussion With your community team discuss what you would like to improve in the practice and community, is it:  A specific change?  A measured outcome from your efforts?  An underlying culture of improvement?  Relationships established in the community?  A combination? (20 min) Source: NHS Improvement leader’s Guide: Sustainability, NHS Institute for Innovation and Improvement,

73 Sustainability of Clinical Redesign in Your Practice (20 minutes) 73

74 What are you trying to sustain With your community team discuss what you would like to sustain in the practice and community, is it:  A specific change?  A measured outcome from your efforts?  An underlying culture of improvement?  Relationships established in the community?  A combination? Source: NHS Improvement leader’s Guide: Sustainability, NHS Institute for Innovation and Improvement,

75 Strategies to sustain the changes Be clear about the benefits (use measurement) Establish and document standard processes and have a plan for ongoing training Establish an ongoing measurement processes Make changes to job descriptions and policies and procedures to reflect change Celebrate success! Source: NHS Improvement leader’s Guide: Sustainability, NHS Institute for Innovation and Improvement,

76 Predictors of sustainability Staff, providers and patients can describe why they like the change and it’s impact Providers and staff are confident and can assist in explaining to others Job descriptions reflect new roles Measurement is part of the practice and used to monitor progress The change is no longer ‘new’, but ‘the way we do things around here’ Source: NHS Improvement leader’s Guide: Sustainability, NHS Institute for Innovation and Improvement,

77 Table discussion: Sustainability activity At your table, develop a plan for increasing the probability of sustaining your improvement work Use one or more of the strategies outlined in the previous slide, or come up with others Share your ideas with the group (10 min) 77

78 This is just the beginning! What would you like to achieve in the coming months? How will you know that you’ve achieved it? What small change can you make in the near future that will make further improvements? 78

79 Next steps … Ongoing support Informal meeting and calls 79

80 Thank you! 80

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