1. PFF Teal = 0+160+175 MAIN COLORS PFF Green = 120+162+47 Light Green = 193+216+47 Red = 242+102+73 HIGHLIGHT COLORS Light Grey = 220+220+210 Dark Grey = 100+98+76 Black = 0+0+0 PALLIATIVE AND ADVANCED CARE SUSAN S. JACOBS, RN, MS PULMONARY FIBROSIS MANAGEMENT STRATEGIES II: PLANNING FOR THE FUTURE NOVEMBER 14, 2015

2. Goals of Presentation 1)What exactly is palliative and advanced care? 2)How do PF patients and healthcare providers use advanced care? 3)What are key actions to prepare for the future?

3. Options for Advanced PF Care Worsening PF Intensive Care Unit Medical Unit Home Care by Hospice Home Care by Family Palliative Care Team

4. Options for Advanced Care  Palliative Care: (World Health Organization): “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”.

5. Options for Advanced Care  Hospice Care: Comfort and end of life care in last 6 months of life  home care, respite care and sometimes inpatient hospital care, all focused on relieving symptoms and providing support to the patient and family.  includes a care team- MD, RN, social worker, spiritual counselor, volunteers, and home health aides.

7. Palliative Care vs Hospice Care Palliative Care Available in many but not all hospitals Covered by most insurances Provides pain and symptom control, emotional support, caregiver support Usually provided as outpatient Appropriate at any stage of illness, even while receiving disease treatments Includes medication and non- medication (massage, relaxation techniques…) Keep your primary doctors Assures your wishes are being honored Hospice Care More common than palliative care Qualify for Medicare benefit when life expectancy < 6mo. Provides pain and symptom control, emotional support, caregiver support Provided at home - sometimes offered in extended care facility No longer receiving curative treatment An ‘inclusive’ service (MD, RN, social worker, spiritual care, grief counseling…) Assures your wishes are being honored

8. Palliative Care vs Hospice Care Palliative Care Begins at time of diagnosis when needed to address symptoms Hospice Care Focus is on care during the final stages of disease

9. Changing Needs of PF Care: What Happens Next??? Hospital : High flow oxygen, Echocardiogram, Bronchoscopy, IV antibiotics, IV steroids Rapid work up for lung transplant if eligible? ER Treatment: antibiotic, antiviral, steroids (oral), nebulizer, adjust oxygen Rx and Discharge OR Admit to Hospital Emergency Room Admission: history, physical exam, CXR, CT chest, lab work, oxygen monitoring, nasal swab

10. Changing Needs of PF Care: Treatment No improvement in radiographic imaging or oxygen requirements  Urgent Lung Transplant?  Discharge on Palliative Care to manage symptoms, and/or Hospice Care  Follow up for symptom response Improvement in radiographic imaging, oxygen requirements, and shortness of breath  Discharge on treatment (e.g. steroid taper, antibiotics and oxygen)  Follow up for disease response

11. Bourke, ClinMed14;Feb 2014 v 14,p79-82  “The course of many types of PF can be prolonged, variable, & unpredictable”  “It can be unclear when and what type of advanced care is needed”  “Advanced care is more than drugs”  Physicians are not good at accurately predicting end of life!

12. Goals of Presentation 1)What exactly is palliative and advanced care? 2)How do PF patients and healthcare providers currently use advanced care? 3)What are key actions you can take now to prepare for the future?

13. Current Use of Advanced Care “Palliative Care and Location of Death in Decedents With Idiopathic Pulmonary Fibrosis” Background: “Palliative care, integrated early, may reduce symptom burden in patients with idiopathic pulmonary fibrosis (IPF). However, limited information exists on timing and clinical practice.” Purpose: “The purpose of this study was to describe the time course of events prior to death in patients with IPF managed at a specialty center with a focus on location of death and timing of referral for palliative care.” Results: (277) patients 57% died in the hospital 13.7% received a Palliative Care referral, usually late in illness Lindell et al.Chest. 2015;147(2):423-429.

14. Current Use of Advanced Care “Palliative care for patients with advanced fibrotic lung disease: a randomised controlled phase II and feasibility trial of a community case conference intervention” Recent UK Government legislation promotes better integration of care to improve patient experience and outcomes, providing better continuity of individualised care at the end of life Could a palliative case conference intervention improve palliative care concerns and be feasible in advanced fibrotic interstitial lung disease (ILD)? Bajwah S, et al. Thorax 2015;70:830–839.

15. Current Use of Advanced Care “Palliative care for patients with advanced fibrotic lung disease: a randomised controlled phase II and feasibility trial of a community case conference intervention” Methods: Advanced ILD pts. were recruited from inpatient and outpatient settings (Royal Brompton Hospital, London) Patients randomized to receive the “Hospital2Home” intervention either within 1 wk OR after 4 wks. from discharge Intervention was case conference led by nurse specialist at pt’s. home to review all of their care concerns and then to develop and implement an action plan The effectiveness measured Palliative Care Outcome Scale (POS) questionnaire that measures symptoms and concerns Bajwah S, et al. Thorax 2015;70:830–839.

16. RESULTS: Mean Palliative Care Outcome Scale (POS) results in the two groups. Sabrina Bajwah et al. Thorax 2015;70:830-839 ‘Hospital2Home’ Group scores ‘Waiting’ Group scores

17. Current Use of Advanced Care “Palliative care for patients with advanced fibrotic lung disease: a randomised controlled phase II and feasibility trial of a community case conference intervention” Discussion: “Before the case conference, patients and caregivers stated they had very little knowledge of support they were entitled to and were suffering alone.” Through the case conference, patients and carers had access to specialist community palliative care services that routinely support patients’ and carers’ holistic palliative care concerns. Patients and carers felt that this reduced anxiety. Moreover they were grateful for the clear crisis management strategy provided through the individualised care plan.” Bajwah S, et al. Thorax 2015;70:830–839.

18. Current Use of Advanced Care “INTERSTITIAL LUNG DISEASE: Specialist Palliative Care is More Than Drugs: A Retrospective Study of ILD Patients” Methods: Chart notes of 45 ILD patients from two UK hospitals reviewed to document whether pt. needs of symptoms, treatments, palliative care, and end-of-life planning took place. Physical symptoms, use of anti depressants, relaxation therapy, counselling, spiritual care referral, preferred place of care and death Results: 49% received opiods, 18% benzodiazepines, 4% antidepressants 2% rec’d relaxation therapy, 7% counselling/psychological support 0% received spiritual care/support 29% received palliative care involvement 17% documented their desire for place of care, 13% place of death Sabrina Bajwah et al Lung (2012) 190:215–220

19. Current Use of Advanced Care “Be honest and help me prepare for the future: What people with ILD want from education in pulmonary rehabilitation” Background: PR can increase exercise tolerance and reduce symptoms in patients with PF. The educational needs may differ among patients with PF compared to those of COPD, emphysema. Methods: Semi-structured interviews were conducted with PF patients and clinicians. Holland et al.ChronicRespDisease2015,v12(2)93-101.

20. Current Use of Advanced Care SAMPLE INTERVIEW QUESTIONS: People with ILD 3. What kind of information do you think it is really essential for people with ILD to know about their condition? 5. What kind of information do you think it would be useful to cover during pulmonary rehabilitation? 8. To finish off, if you could give health professionals one piece of advice about educating people with ILD about their condition, what would it be? Clinicians caring for people with ILD 3. What kind of information do you think is really essential for people with ILD to know about their condition? 5. For people with ILD, what kind of information do you think it would be useful to cover during pulmonary rehabilitation? 8. People with a wide range of ILDs might take part in pulmonary rehabilitation. How do you think the educational needs of people with ILD might vary according to their diagnosis? Holland et al.ChronicRespDisease2015,v12(2)93-101.

21. Current Use of Advanced Care “Use of a Care Coach in Palliative Care” Background: Many patients do not have any documentation in their medical records of specific conversations and plans for end of life care Purpose: to assess effectiveness of a “Symptom-Based” Care model Methods: 105 pts. with terminal diagnosis were randomized to Symptom Based Care, and 108 to Usual Care. Patients referred at time of diagnosis to Palliative Care, assigned a layperson Health Coach, had goals reviewed with patient and family. Had frequent re-assessment of symptoms and treatment adjustments. Results: 80% treatment group completed Adv Directs vs 45% usual care Goals of care were documented in 95% treatment group vs 29% usual care No difference in use of Hospice Treatment group had fewer ER admissions Encouraged patients to advocate for themselves

22. Current Use of Advanced Care “Be honest and help me prepare for the future: What people with ILD want from education in pulmonary rehabilitation” Results: ILD patients (18): Strongest theme was desire for PF clinicians to be honest with them about their future, discuss their prognosis, and discuss end of life planning, even in the group setting of PR (with a few exceptions) ILD clinicians (14): Agreement that PR was beneficial d/t exercise and group support Majority of MDs felt that group setting was not appropriate for discussion about the future and end of life planning d/t variability of each pt’s case. Holland et al.ChronicRespDisease2015,v12(2)93-101.

23. Current Use of Advanced Care

24. Goals of Presentation 1)What exactly is palliative and advanced care? 2)How do PF patients and their healthcare providers currently use advanced care? 3)What are key actions you can take now to prepare for the future?

25. Key Actions: 1.Get Education and Support  Attend Pulm Rehab!  Attend ILD Support Groups  Request information from PFF  Contact AARP, Aging with Dignity, POLST forms, Five Wishes, DPA, etc… 2.Talk to your health care team at every visit about your prognosis and what to expect 3.Request a referral to a Palliative Care Clinic to have a more focused visit devoted to these thoughtful issues

26. Key Actions (cont’d): 4. Topics to think about and discuss with your family and physician (from Atul Gawandi’s book “Being Mortal”):  What is your understanding of where you are and of your illness?  Your fears or worries for the future  Your goals and priorities  What outcomes are unacceptable to you? What are you willing to sacrifice and not?  What would a good day look like?

27. Key Actions (cont’d): 5.Use the “Five Wishes” as a start for conversation with your physician and/or family: The person I want to make health care decisions for me when I can’t make them for myself My wish for the kind of medical treatment I want or don’t want My wish for how comfortable I want to be My wish for how I want people to treat me My wish for what I want my loved ones to know www.agingwithdignity.org

28. Other Research: 6.Stanford Letter Project: Even though research shows that MDs would not choose aggressive life-prolonging treatment for themselves, they are likely to pursue such treatments for terminally ill patients This project encourages patients to write a letter to their doctor, describing what matters most to them in their last days There is also an app that creates pre-filled advance directives from the letter template Important for patients to have the ability to take the lead in having these discussions

29. Summary:  We all need to do this better  However, PF symptoms and rate of progression are unpredictable making it challenging to know the when and how to use advanced care  Earlier discussions and interventions can decrease uncertainty, better control symptoms, and meet the psychosocial needs of patients and caregivers

30. Resources: https://getpalliativecare.org/whatis/faq/ www.CaregiversLibrary.org http://www.nhpco.org/ http://med.stanford.edu/letter http://www.pulmonaryfibrosis.org/life-with- pf/support-groups http://www.pulmonaryfibrosis.org/life-with- pf/support-groups

31. Thank you! Questions?