@ MarieCurieNI

1. @MarieCurieNI

2. The Benefits of Palliative Interventions for Chronic Respiratory Diseases Dr Joan Regan Palliative Medicine Consultant Co-Medical Director Marie Curie Hospice Belfast @MarieCurieNI

3. What’s the local context? • Currently in NI there are 40,955 people living with COPD (2% of the population) • In 2017, diseases of the respiratory system accounted for 13% of all deaths -note this figure excludes lung cancer and asthma • In 2017, 6% of deaths registered in Northern Ireland were due to COPD. This accounts for 47% of all respiratory deaths • COPD is currently the fourth leading cause of death in the world. • COPD is projected to be the 3rd leading cause of death by 2020.

4. Chronic Breathlessness • Breathlessness that persists despite optimal treatment of the underlying pathophysiology; and results in disability. (Johnson et al. 2017) • The “lived experience”: • Subjective sensation • In COPD—often associated with emotional descriptors such as “frightening”..“helpless”.. “awful” (Williams 2008) • Acute episodes of SOB lasting minutes • Difficulties with ADLs—washing, dressing, toileting, moving around • Meaning of breathlessness for the individual

5. Martin’s Experience https://vimeo.com/39258619

6. Recognised Barriers to Palliative Care for patients with Chronic Respiratory Diseases • Unpredictable prognosis • Lack of disease specific expertise • Fear of opioids • Reluctance to accept palliative care • Lack of awareness of gravity of their condition

7. Inadequate Palliative Care in Chronic Lung Disease. An Issue of Health Care Inequality Crystal E. Brown 1, Nancy S. Jecker2, and J. Randall Curtis 1 Vol. 13, No. 3 | Mar 01, 2016 Annals of American Thoracic Society • Patients suffer higher symptom burden, social isolation and lower QoL than patients with cancer diagnoses • Patients with COPD are more likely to receive cardiopulmonary resuscitation 1 hour before death • Patients with ILD were less likely to have assessment of their pain than were patients with cancer • Both patients with COPD and ILD were less likely to have a discussion of prognoses compared with patients with cancer

8. Michael T. Claessens MD, MS ,Joanne Lynn MD, MA, MS ,ZhenshaoZhong PhD ,Norman A. Desbiens MD ,Russell S. Phillips MDAlbert W. Wu MD, MPH, Frank E. Harrell Jr. PhD , Alfred F.rs Conno Jr. MDDying with Lung Cancer or Chronic Obstructive Pulmonary Disease: Insights from SUPPORT First published: 27 April 2015 CONCLUSIONS: Hospitalized patients with lung cancer or COPD preferred comfort‐focused care, yet dyspnoea and pain were problematic in both groups. Patients with COPD were more often treated with life‐sustaining interventions, and short‐term effectiveness was comparatively better than in patients with lung cancer. In caring for patients with severe COPD, consideration should be given to implementing palliative treatments more aggressively, even while remaining open to provision of life‐sustaining interventions.

9. Where does palliative care fit?

10. Teamwork works best

11. Chronic obstructive pulmonary disease in over 16s: diagnosis and management NICE guideline [NG115] Published date: December 2018 Palliative care 1.2.102 When appropriate, use opioids to relieve breathlessness in people with end-stage COPD that is unresponsive to other medical therapy. [2004] 1.2.103 When appropriate, use benzodiazepines, tricyclic antidepressants, major tranquillisers and oxygen for breathlessness in people with end-stage COPD that is unresponsive to other medical therapy. [2004] 1.2.104 People with end-stage COPD and their family members or carers (as appropriate) should have access to the full range of services offered by multidisciplinary palliative care teams, including admission to hospices. [2004]

12. Benefits of palliative interventions in chronic respiratory conditions • Symptom management • Holistic support in conducive environment • Advance Care Planning • Preparation for end of life • Bereavement support for families

13. The hidden psychological impact of chronic respiratory diseases Dr Kelly Martínez Clinical Psychologist Community Respiratory Team Belfast Health & Social Care Trust

14. Plan • Mental health and COPD • Anxiety • Depression • The Community Respiratory Team and my role in it • How I work • What helps? • Resources

15. Mental health and COPD • Individuals with COPD more likely to experience anxiety and depression • 40% prevalence v 10% in general population (Demyttenaere et al., 2004) • Poorer outcomes • Length of stay, survival rates (Kennedy et al., 2015) • Interference with pulmonary rehab (Schuz et al., 2015; Fan et al., 2008) • Those experiencing childhood trauma more likely to develop COPD (Anda et al., 2008)

16. Anxiety and COPD • Anxiety – anticipation of future threat and inability to cope • Fear – imminent threat (real or perceived) • Panic is a fear response • Rates of anxiety higher in COPD than in patients with cancer, heart failure and other medical conditions (Brenes, 2003) • Physical symptoms – fight, flight or freeze. Overlap with COPD symptoms

17. Depression and COPD • Patients with severe COPD twice as likely to develop depression as those with mild COPD (Yohannes & Alexopoulos, 2014) • Cause and consequence (Atlantis et al., 2013) • Loss • Role • Coping strategy • Independence • Physical comfort/ease • Future hopes/plans • Clash of current capability with beliefs • Thoughts of self-harm/suicide

18. Other concerns… • Post Traumatic Stress Disorder • Northern Ireland has highest rate in the world (Ferry et al., 2012) • Can be from one event (e.g. ICU admission) or chronic trauma (e.g. domestic violence) • Cognitive changes • Age and chronic hypoxia • Impact on self-management

19. Belfast Trust Community Respiratory Team • Multidisciplinary team care in the community for patients with a diagnosis of moderate to severe COPD or ILD/pulmonary fibrosis • MDT: Nursing, Physiotherapy, Occupational Therapy, Dietetics, GPwSI and Clinical Psychology • Access to Clinical Psychology for CRT solely through CRT professionals – no direct referrals

20. Screen for mood difficulties using PHQ-9 and GAD7 • Discuss at weekly MDM • Clinical psychology service provided through • MDM discussion • Consultation • Co-working/supervision • One-to-one and group therapy • Staff training

21. ACT • Starts from the premise that suffering is a normal, inevitable part of life • Behavioural therapy – cognitions less important • Aim is to achieve a rich, full meaningful life while accepting the inevitable pain that goes with it – through taking values-guided, mindful action • ACT teaches: • Mindfulness skills • Ways to identify what is truly important to you

22. What helps? • Listening is an intervention • Empathise and normalise • Managing expectations • Acting non-judgementally • Being consistent • Focusing on basics • Take 5: Give, Be active, Connect, Keep learning, Take notice

23. Belfast Trust resources • Single Point of Referral (65+) • Psychiatry of Old Age, CMHT for Older People, Home Treatment Team for 65+ • Emergency Referrals (within 4 hrs) 02895 042700 or OOH 02895 454999 • Urgent (2 weeks) or Routine referrals via CCG • Can self refer to CMHTOP • One Point of Referral (18-65) • New patients for mental health assessment • Referrals via CCG, email • Mental Health Hub • For mild to moderate mental health problems

24. Other resources • NI Chest Heart & Stroke • Taking Control programme (6 weeks) • Available across N Ireland • Info available https://nichs.org.uk/how-we-can-support-you/taking-control-self-management/ Tel: 028 9032 0184 • ICU support group • ICU https://icusteps.org/support/belfast • Northern Trust • Clinical Health Psychology service 028 9441 3127

25. Improving access to palliative care for patients with chronic respiratory diseases Anne Marie Marley Respiratory Nurse Consultant Belfast Health and Social Care Trust

26. “....we must remain alert to the possibility that we may be over-treating patients to their detriment. Experience shows that this may be best achieved by honest, open and full discussion with patients.” Patients in the last year of their lives….. • Identification may be difficult • Focus on single system disease despite complex picture • Rapid decision making in acute situation • Therapy may be harmful CMO Scotland Annual Report 2014-15

27. Health trajectories Cancer Organ failure Function Physical and cognitive frailty Age/Time

28. Imminence of death among hospital inpatients (March 31st 2010) • 10,743 patients in 25 hospitals: • 9.3% died during index admission • 28.8% died within 12 months Clark D et al. (2014). Imminence of death among hospital inpatients: Prevalent cohort study. Palliative Medicine, 28(6), 474-479

29. Parliamentary Ombudsman’s Report 2015 • “…the possibility that a person may die within the next few hours, days or weeks should be recognised and communicated clearly, and decisions made and actions taken that are in accordance with the patient’s wishes, and are regularly reviewed…”

31. …a method of improving communication …avoidance of treatment that is futile burdensome contrary to the patient’s wishes • patients nearing the end of life • patients who are seriously ill with possibility of deterioration

32. Hospital Anticipatory Care Pathway Enhance communication and continuity of care (out of hours) for seriously ill patients at risk of deterioration. Outline treatment escalation/ limitation: over/ under-treatment avoided Highlight the diagnosis of dying, where appropriate To hold open prognostic conversations with patients and families Earlier use of palliative care where appropriate DNACPR order still required

33. Hospital Anticipatory Care Pathway Specialty specific - written and endorsed by senior medical staff Guidelines for the use of the forms same for all specialties Patient plan completed by any medical or nursing team member, usually during ward round or in consultation with MDT As far as possible based on discussion with patient / family about prognosis and treatment. Endorsed by lead clinician within 24 hours Prompts treatment of reversible causes of deterioration and symptom relief Does not provide for treatment withdrawal

34. BHSCT – Medical questionnaire • 30% of doctors do not feel confident in discussing end of life issues with patients and 41 % find it difficult. • Only 28% agree that they have had sufficient training in these issues.

35. BHSCT – Medical questionnaire • 90% of doctors state that they have witnessed patients undergoing treatments they consider futile / burdensome • 71% have been left unsure what active interventions a patient is still considered for • 65% report having to discuss COT / DNACPR out of hours with patients already seen by their consultant team “I find it particularly disheartening when a patient is handed over to the nightshift as "wouldn't be a good ICU/CPR candidate but we haven't discussed it and haven't made them DNACPR. We recommend they would need a resus discussion if they 'went off.'" – Med Reg “This should be an extremely rare occurrence but unfortunately seems to have been allowed to become the norm” – Med Reg

36. BHSCT – Nursing questionnaire • 77% of nurses have been left unsure what active interventions their patient is still considered for. • 73% have witnessed patients undergoing treatments they consider futile/ burdensome (often/ sometimes) “ I have had to specifically ask the medical team to document the 'ceiling' of treatment, as often it is simply documented that a patient is for 'ward level ceiling of care' which unfortunately does not cover NIV, fluid resuscitation and drugs patient can or cannot have”

37. BHSCT – Nursing questionnaire • “I have regrettably witnessed nursing colleagues interpret a DNACPR order as a license to do less for the patient...” • ‘’I feel that sometimes it is left too late to keep a patient comfortable… sometimes active treatments at this late stage can cause stress and anxiety to both the patient and their relatives’’

40. Outcome Primary Drivers Secondary Drivers Change Ideas AIM: By October 2018, 80% of respiratory patients with a DNARCPR will have a ceilings of treatment plan documented Driver Diagram • Agree who can discuss ceilings of treatment with patients and their family and who will complete the COT Plan: • Senior doctors and senior nurses Roles and Responsibilities Education • Agree and introduce a clinical champion on each site • Education sessions for all clinical staff Awareness of COT Communication between teams re COT and between staff and patients / families. • Include on ward round documentation Communication Patients identified and documented as being eligible • Template agreed and introduced • Prompts to complete. Link COT Plan to discharge planning and communication with GP COT Plan completed Comprehension discharge planning

41. Aim Statement • By the end of October 2018, 80% of those respiratory patients who are not for resuscitation should have a ceiling of treatment form in addition to a DNARCPR form

42. When should palliative care be initiated? • When a patient has active, progressive and usually advanced disease for which the prognosis is limited (although it can be several years) and the focus of care is quality of life. • Palliative care is a continuum of care that may apply from diagnosis of a life- limiting condition right through to the end phase of life when death is expected (DHSSPS 2010)

43. All patients who have palliative or end of life care needs should be given the opportunity to have a district nursing palliative assessment at home, regardless of their perceived need in hospital. BHSCT standard for nursing discharge of patients who have palliative or end of life care needs The standard and supporting information can be found on the Palliative and End of Life (strategic) HUB site.

44. Palliative discharge form available on Palliative Care (clinical) HUB site Remember to inform call management that the referral is for palliative assessment. You should then be asked for specific palliative care details.

45. Benefits to the patient It is anticipated that the timely referral to district nursing services will result in: • Identified and registered on a district nursing case load • Access services only available via district nursing • A named key worker, who in partnership with the patient, will help to co-ordinate his/her care • Individualised holistic assessment of the patient’s/carer’s needs and the opportunity to engage in proactive planning • Information on who to contact if needed both in and out of hours • Increased opportunity for GPs to provide relevant information to OOH services • Patient’s needs, wishes and decisions discussed and, with their permission, communicated to those caring for them including in/out of hours services • The patient being placed on the resident Trust palliative and end of life care coordination system.

46. In Summary - We want to… • Improve patient safety… • Avoid overtreatment / over-investigation • when this is futile, burdensome, or against patient wishes • Avoid under treatment • By removing ambiguity • By initiating palliative care measures where appropriate • Enhance communication and continuity of care (out of hours) for seriously ill patients at risk of deterioration • Encourage communication and openness with our patients • Involve them in decision making • Don’t avoid difficult prognostic conversations

47. Marie CurieBreathing Space Clinic Lesley Rutherford

48. What is the Breathing Space Clinic? • Weekly, Nurse-led, multi-disciplinary clinic located at Marie Curie Hospice Belfast • Physiotherapist • Occupational therapist • Social worker • Complementary therapists • Client Group: • People with lung cancer or mesothelioma • People with advanced non-malignant respiratory conditions such as COPD, pulmonary fibrosis • In exceptional circumstances, people with a primary cancer, other than lung, with extensive pulmonary metastases, causing breathlessness

49. Driving force behind the development of the “Breathing Space Clinic”

50. “Living with dying”“ Patients and carers experiences of living with lung cancer” ( Rutherford et al 2006) “I suppose my concern really is not the fear of dying; it’s the problem of living and being positive and keeping a positive attitude and not spending time discussing, complaining or grumbling. Just trying to get on with life in the limited way that I can”