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Compassionate Care at End-of-Life


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  • 1. Compassionate Care at End-of-Life 30 May 2009 Palliative Care in 2009: Best Practices Susan D. Block, MD Professor of Psychiatry and Medicine Dana-Farber Cancer Institute and Brigham and Women’s Hospital Harvard Medical School Center for Palliative Care
  • 2. What should we expect? • All patients should have access to expert palliative care services as needed • All hospitals should have palliative care clinical programs • All physicians should have basic competencies in palliative care • Standards should guide care and training Compassionate Care 30 May 2009
  • 3. How are we doing? 2008 report card on access to hospital- based palliative care • Average grade is “C” across U.S. – Massachusetts: “C”
  • 4. Family perspectives Teno JM et al. JAMA 2004;291;88-93 Families reporting: Hospice % Hospital % Inadequate help w/emotions 35 52 Poor MD communication 18 27 Inadequate contact w/ MD 14 51 Lack of respect 4 20 Poor family support 21 38 Excellent care 71 47
  • 5. Hospice care • Hospice care: – Began in the US in 1974 – Medicare Hospice benefit in 1982 – Hospice now provides care for 1 million of the 2.5 million people (40%) who die in the U.S. each year – 4700 hospices in the U.S. – Provides care in multiple settings • 42% at home • 23% at nursing facility • 5% at residential facility • 19% in hospice inpatient facility • 10% in acute care hospital
  • 6. The development of palliative care in the US – In 1990 there was no field in the U.S. – A small number of clinical programs – Little education for clinicians; few educational opportunities – Minimal research – No standards – No career path – A few pioneers
  • 7. The present • Hospice and Palliative Medicine is an ACGME and ABMS-approved sub-specialty with 10 co-sponsoring boards • 30% of all hospitals have a palliative care program (75% COTH hospitals) • 2700 board-certified MDs • Numerous journals • National Consensus Standards for Quality Palliative Care • >48 ACGME-accredited PM fellowship training programs • LCME and ACGME requirements for PM teaching
  • 8. Medical student education • From a smattering of EOL educational offerings in medical schools to virtually 100% penetration of something • Vague Liaison Committee on Medical Education requirement • Major deficits in preparation to provide EOL care, lack of clinical training experiences (especially psychosocial care) • Inadequate quality and quantity of teaching • Pervasive “hidden curriculum” communicates negative attitudes about EOL care • Poor support for students dealing with death => traumatizing
  • 9. Resident education • PM is a core competency for residencies in IM, FM, Surgery, Neurology, Geriatrics, Hem/Onc, Radiation Oncology, Critical care, but standards are vague • Increased presence of PM questions on specialty, sub-specialty exams • Again, wide variation in curricula, clinical experiences • Many teaching hospitals lack PM program; can’t provide high-quality PM training • Inadequate preparation to provide EOL care • Little improvement in knowledge over course of IM residency • Communication, self-care, psychosocial competencies weakest, but major gaps exist even in routine pain management
  • 10. Opportunities during medical school and residency • Students eager for in-depth clinical experiences with patients during first two years • Medical students and residents have positive attitudes towards PM and want to learn – Connects with idealism – Distress about care can be a motivator for learning • Challenging cases represent teachable moments • Teaching PM is an efficient way to teach other core competencies (e.g., professionalism, communication, teamwork) • Good teaching and enthusiastic teachers stimulate interest in the content • Concern about trainees’ emotions enhances engagement and is appreciated
  • 11. Non- PM Fellowship Training • Major inadequacies in nephrology, hematology and oncology, critical care – Only 13% oncology fellows had required rotation – 80% report no training in self-care, 75% no teaching re: depression – Only 5% got 5 basic questions about EOL care correct on brief knowledge assessment – High levels of moral distress • Geriatrics fellows better prepared
  • 12. PM fellowship training • < 3 PM fellowships => >48 ACGME accredited programs with approximately 100 graduates/year • PM fellowship standards • HPM competencies • Current and projected number of graduates inadequate to meet need Compassionate Care 30 May 2009
  • 13. Faculty Development • Dramatic growth in need for palliative medicine educators for students, residents, fellows, etc. • Research shows need for improved faculty competencies in teaching about EOL care – 30-70% of IM and FM faculty have never taught about such common topics as care in the home, saying good-bye, depression at the EOL, opioid tolerance, neuropathic vs somatic pain, etc. • Specialist PM educators are needed to teach these core competencies
  • 14. Research needs • A robust evidence base to inform clinical practice – Pain, symptoms, psychosocial issues, bereavement • Health services research to guide delivery of care • Basic science research that will lead to new treatment modalities • A structure to train PM researchers • Research funding for palliative care
  • 15. The future: The health care system • Broken health care system • Increasing health care costs • Increasing numbers of elderly patients • Threats to hospice reimbursement • Palliative care under-reimbursed • Physician/nurse workforce shortages – Major shortages of oncologists and other sub- specialists • More oncology treatments that work later in disease course (falling rate of hospice utilization) • Inadequate number of researchers • Increased emphasis on teamwork • Primary care fading away • Hospitalists as key inpatient providers
  • 16. Solutions: Education • Develop robust standards for medical student and resident training in palliative medicine • Develop linkages between PM and other sub-specialties (e.g., PM-ED, PM-Onc, PM-Geri, etc.) • Develop high-quality PM training program for hospitalists – Need focus on communication, psychosocial care, coordination/out of hospital care • Enhance training for academically-oriented PM physicians through provision of additional funding and development of programs focused on research and education in PM • Rigorous, flexible mid-career training program • Strong and early leadership training opportunities for PM faculty
  • 17. Solutions: Service delivery • Expand access to palliative care services in hospitals and outpatient settings (clinics, nursing home, hospice) • Raise standards in hospice to require certification of hospice medical directors • Continue to build collaborations between hospice and palliative care • Address disparities – Regional – Safety net hospitals – Small community hospitals
  • 18. Opportunities • Improved quality + possibility of reduced costs is a rare combination • Need for public education and advocacy to enhance understanding of how palliative care can contribute to improvements in care and resource use • Maybe the time is right