Transplant Dilemmas in Palliative Care

Transcription

1 Transplant Dilemmas in Palliative Care Stacy Schulof APRN, FNP-C

2 DISCLOSURES No financial disclosures I am a recovering ICU nurse

3 OBJECTIVES Identify three dilemmas Review the patient population Make the case for increased Palliative Care involvement in patients seeking transplantation Propose indications/potential triggers Discuss barriers to implementation Recommendations and my next steps

4 THREE DILEMMAS Divergent or complementary? How do we measure success? I want hospice but I also want my medication.

5 DILEMMA #1 DIVERGENT OR COMPLEMENTARY? We want the same thing! Palliative care is an approach that improves the quality of life of patients and their families facing problems associated with serious illnesses It is applicable early in the course of illness, in conjunction with other therapies intended to prolong life. (World Health Organization, accessed 2018)

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7 WHO ARE WE TALKING ABOUT? Advanced chronic disease, significant symptom burden, facing mortality while awaiting transplant 114,993 people need a life-saving organ transplant. Of those, 74,929 are active on the waiting list (roughly 65%) Every 10 minutes, someone is added to the list On average 20 people die per day while waiting In 2016, over 7,000 people died while waiting People are de-listed, only 10% of which are referred to palliative care Post-transplantation introduces new risks (UNOS, 2018) (Poonja, Brisebois, van Zanten, et al., 2014)

8 ONLY 10%?

9 REPORTED SYMPTOMS (Poonja et al., 2014)

10 MAKING THE CASE The goal is transplant but what if we don t get there? What if we do get there but the outcome isn t what we hoped for? Symptom burden Resource utilization

11 SIGNIFICANT MORBIDITY AND MORTALITY AMONG HOSPITALIZED END-STAGE LIVER DISEASE PATIENTS IN MEDICARE Cristal L. Brown, MD, Bradley G. Hammill, DrPH, Laura G. Qualls, MS, Lesley H. Curtis, PhD, and Andrew J. Muir MD, MHS Journal of Pain and Symptom Management 2016; 52(3): Objective: identify end-of-life trajectory of hospitalized ESLD in Medicare Retrospective cohort study ESLD cohort (n=22,311), decompensated HF cohort (n=85,397) End points at 1 and 3 years: Inpatient: mortality, discharge to hospice Post-discharge: all-cause mortality, re-hospitalization, hospice enrollment, days alive out of hospital

12 OBSERVED OUTCOMES High rates of rehospitalization High rates of mortality Reduced days alive out of the hospital Low median of days in hospice before death

13 DILEMMA #2: WHEN THE SYSTEM FAILS Consider the following statement from the American Society of Transplantation: The current metrics used for measuring transplant program performance are not appropriate in the modern era.

14 CASE STUDY 63 yo M from out of state underwent transplant in October Discharged in January to LTAC. Readmitted in January, February, March, April. Post-transplant complications: Delirium Bilateral scleral ulcers Pericardial effusion requiring drain Numerous infections including multi-drug resistant pseudomonas, VRE bacteremia, CMV viremia, C.difficile Respiratory failure, ventilator dependency and tracheostomy Upper GIB requiring 10 units prbcs for stabilization Renal failure requiring dialysis TPN dependent

15 NOT EXACTLY WHAT HE HAD IN MIND

16 NOTES FROM NURSING Increasing O2 requirement, episode of CP, workup unremarkable, poor sleep with on-going delirium Bedside bronch done-pt chemically paralyzed/sedated, BP managed during bronch w/levophed; pt continues on vaso and requiring increased vent support - up to 100% FIO2 and PEEP of 14; bloody secretions continue; platelets given; Wife at bedside and stated pt looks much worse, questioned desire to continue, emotional support given and transplant PA paged

17 NOTES FROM SOCIAL WORK Unit staff consulted this SW regarding patient's condition. Per report, patient has been experiencing significant pain (based on vital signs), but he is unable to get strong pain meds, as they "bottom out" his blood pressure. There is concern regarding patient's clinical picture, as he is not only in significant pain but also is requiring several invasive medical interventions. Transplant was unable to keep the meeting, due to OR schedules Wife expressed with sadness how hard [he] has tried to recover and that he would not want to continue like this any longer. She stated "I want to withdraw care. I no longer want dialysis, or one more antibiotic".

18 CASE CONFLICT The transplant team The family The nurses

19 MORAL DISTRESS IN ICU NURSES (Mealer & Moss, 2016)

20 INTERDISCIPLINARY COMMUNICATION

21 INDICATIONS Accelerating need for medical care/hospitalizations Significant change in health/functional/cognitive status Worsening disease High or increasing symptom burden Patient/caregiver/provider distress Conflict regarding goals of care Limited options Patient has declined to pursue transplant

22 BARRIERS Disease factors Patient factors Provider factors Access

23 SURVEY No HUGE barriers Fear of ramifications on program Areas identified to be moderate to large barrier: Communication Unrealistic expectations of survival to receive transplant

24 DILEMMA #3 MEDICATION AT THE END OF LIFE Background Continuation or Discontinuation Substitution (Gillespie, Smith, &O Neil, 2017)

25 TIMES ARE CHANGING OR AT LEAST THE LANGUAGE IS (Santivasi, Strand, Mueller & Beckman, 2017)

26 PREPAREDNESS PLANNING (Santivasi, Strand, Mueller & Beckman, 2017)

27 RECOMMENDATIONS Increase primary palliative care skills Identify potential triggers Future studies examining patient-reported quality-of-life outcomes and/or health care utilization in the setting of early palliative care for people with end stage organ disease For nurses involved in the post-transplant population, recognizing this imperfect system Consider registering as an organ donor

28 MY NEXT STEPS Following mortality trends within the heart transplant program Identify practices surrounding de-listing Increasing personal knowledge of symptom management preferences

29 REFERENCES Baumann AJ, Wheeler DS, James M, Turner R, Siegel A & Navarro VJ. (2015). Benefit of early palliative care intervention in end-stage liver disease patients awaiting liver transplantation. Journal of Pain and Symptom Management, 50(6): Brown CL, Hammill BG, Qualls LG, Curtis LH & Muir AJ. (2016). Significant morbidity and mortality among hospitalized end-stage liver disease patients in Medicare. J Pain Symptom Manage, 52(3): Colman RE, Curtis JR, Nelson JE, Effren L, Hadjiliadis D, Levine DJ Singer LG. (2013). Barriers to optimal palliative care of lung transplant candidates, Chest, 143(3): doi: /chest Colman R, Singer LG, Barua R, Downar J. (2015) Outcomes of lung transplant candidates referred for co-management by palliative care: a retrospective case series. Palliat Med;29(5): Gillespie H, Smith MA & O Neil TA. (2017). Fast Facts and Concepts #333: Transplant medication management for patients nearing end of life. Retrieved from: On March 30, Lambda S, Murphy P, McVicker S, Harris Smith J & Mosenthal AC. (2012). Changing end-of-life practice for liver transplant service patients: structured palliative care intervention in the surgical intensive care unit. J Pain Symptom Manage., 44(4): doi: /j.jpainsymman Mealer M & Moss M. (2016). Moral distress in ICU nurses. Intensive Care Medicine, 42(10): Poonja Z, Brisebois A, van Zanten SV, et al. (2014). Patients with cirrhosis and denied liver transplants rarely receive adequate palliative care or appropriate management. Clin Gastroenterol Hepatol, 12: Potosek J, Curry M, Buss M & Chittenden E. (2014). Integration of palliative care in end-stage liver disease and liver transplantation. J Palliat Med, 17(11): doi: /jpm United Network of Organ Sharing (UNOS). Data. Retrieved from on March 26, Wentlandt K, Dall Osto A, Freeman N, Le LW, Kaya E, Ross H Zimmermann C. (2016). The transplant palliative care clinic: An early palliative care model for patients in a transplant program. Clin Transplant, 30: Wentlandt K, Weiss A, O Connor E & Kaya E. (2017). Palliative and end of life care in solid organ transplantation. Am J Transplant, 17: WHO Definition of Palliative Care. World Health Organization website. March 25, 2018.