GAPS IN END OF LIFE CARE

1. GAPS IN END OF LIFE CARE BY MICHAEL MARSCHKE, MD MEDICAL DIRECTOR OF HORIZON HOSPICE

2. DEATH & DYING 2005 • 80% of Americans die in Institutions today • 90% still die of a chronic illness • 100% of patients die

3. WHAT DYING CAN BRING • Physical suffering – pain, dyspnea, weakness, vomiting, constipation, weight loss • Loss of independence – cannot do own ADLs, incontinence, loss of decision-making ability • Psychologic distress – depression, fear, feelings of being burdensome • Social isolation • Financial pressure • Spiritual distress

4. BARRIERS TO A DIGNIFIED, COMFORTABLE DEATH • Undue physical suffering • Emotional turmoil • Financial constraints • Family stress • Cultural barriers • Poor communication • Spiritual concerns • Institutionalization • Lack of bereavement

5. PHYSICAL SUFFERING • What are the most common symptoms in the dying patient? • How good are we at pain control? • <5% of medical schools have formal courses on the care of the dying • What are the patient’s concerns? • Differing goals • Nutrition, hydration issues

6. BARRIERS TO NARCOTIC USE • Physicians unfamiliar with proper use and in past felt it was being monitored • Tolerance effects • Fear of side effects • Ethical issues – double effect • “Street drugs” • Fear of addiction

7. EMOTIONAL TURMOIL • Emotional ‘stages’ of death • Psychologic impact on physical suffering • Impact on the family • Euthanasia/suicide

8. FINANCIAL CONSTRAINTS • Impact on hospice care • Impact on the family • Hospice vs. non-hospice • “I don’t want to be a burden”

9. FAMILY STRESS • Burdens of care • Burn-out • Leave of absence • Handling the patient’s care needs/education

10. CULTURAL BARRIERS • Role of culture in death and dying • Unfamiliarity of cultural rituals in an urban area • Role in suffering • Road blocks to care

11. POOR COMMUNICATION • Physician’s difficulty in presenting bad news • Physicians’ personal fears • Being hopeful vs. realistic • Mis-information • Lack of advanced directives • Caregiver communication

12. SPIRITUAL CONCERNS • Meaning and purpose of life • Completion • How they impact on suffering • Role of physicians with spiritual concerns

13. INSTITUTIONALIZATION • Only 15-20% of the dying receive hospice care, and 80% die in institutions • Breakdown of family unit • Pushing death away • Impersonal nature of institutional death

14. LACK OF BEREAVEMENT • Little in the way of bereavement programs in many areas • Unresolved grief • High risk period after spousal death • Poor contact by MD • Get on with life

15. Physical suffering - Emotional turmoil - Multi-disciplinary Experts in chronic pain High pain relief Concentrate on what the patient would want Multi-disciplinary Social worker on call Alleviating suffering can prevent suicide Being there HOW DOES A HOSPICE ADDRESS THESE BARRIERS

16. Financial constraints – Social worker Hospice pays for more home care Indigent care Volunteers HOW DOES HOSPICE ADDRESS THESE BARRIERS

17. Family stress - Cultural barriers - CNA, volunteer help Social work support Respite care Education Volunteers from different backgrounds Learn about their approaches/needs Interpreters HOW DOES HOSPICE ADDRESS THESE BARRIERS

18. Poor communication – Spiritual concerns - Find out what the patient knows and wants to know Be realistic Open lines of communication Chaplains Accept and be open about how their spirituality affects them Life review HOW DOES HOSPICE ADDRESS THESE BARRIERS

19. Institutionalization Lack of bereavement - Hospice is not a place 80% of care done at home Hospice stays involved for 13 more months Bereavement team Support groups HOW DOES HOSPICE ADDRESS THESE BARRIERS

20. WHAT CAN YOU DO AS A FUTURE PHYSICIAN • Realize your key role in this passage of your patient’s life • Learn how to use narcotics the right way • Be open with communication and plan ahead • Use other disciplines • Understand your patient’s wishes • Alleviate suffering • Realize your own vulnerabilities • Recognize the naturalness of dying