1. Palliative Care End of Life and More

2. Palliative care aims to relieve suffering and improve the quality of living and dying. Palliative is from the Greek word “to cloak”

3. Palliative Care: Some Definitions • The study and management of patients with active, progressive, far-advanced disease for whom prognosis is limited and the focus of care is quality of life (QOL) (British Board of Medical Specialties, 1987)

4. Active, total care of patients whose disease is not responsive to curative treatment. • Control of pain, other symptoms, psychological, social spiritual problems is paramount. • The goal is the achievement of the best possible QOL for patients and their families.

5. Many aspects of palliative care are also applicable earlier in the course of illness, in conjunction with anti (cancer) treatment. (WHO, 1990) • Seeks to prevent, relieve, reduce or soothe the symptoms of the disease or disorder without effecting a cure (IOM, 1997)

6. Myths and Misconceptions Palliative care is end-of-life care only Palliative care is doing nothing Palliative care starts when curative treatment stops Palliative care is new-age “kumbayah”

7. Myths andMisconceptions Palliative care means that medical care has failed Palliative care is a nice but not necessary addition to health care Palliative care can only be implemented by physicians and nurses with specialty credentials

8. Palliative Care is appropriate for any patient and/or family living with, or at risk of developing a life-threatening illness • due to any diagnosis • with any prognosis • regardless of age • at any time they have unmet expectations and/or needs, and are prepared to accept care Center to Advance Palliative Care 2000

9. Palliative care aims to address: • physical, psychological, social, spiritual and practical expectations and needs • Suffering • loss, grief and bereavement • preparation for, and management of, self-determined life closure, the dying process, and death Center to Advance Palliative Care 2000

10. Palliative care is most effectively delivered by an interdisciplinary team. Palliative care may complement and enhance disease-modifying therapy, or it may become the total focus of care. Palliative care may also be applicable to patients and families experiencing acute illness and/or chronic illness.

11. Distinction: Palliative Care and Hospice Palliative care addresses the physical, psychosocial, and spiritual needs and expectations of patients with acute or chronic illness at any time during that illness—even if life expectancies extend to years. Hospice care is a palliative care “package”provided to patients who have a life expectancy of less than 6 months if the disease runs its usual course, in the judgment of the patient's attending physician and the hospice medical director. Medical intervention is limited.

12. How Americans Died in the Past . . Early 1900s • average life expectancy 50 years • childhood mortality high • adults lived into their 60s

13. Death in America Today Modern health care • only a few cures • live much longer with chronic illness • dying process also prolonged

14. Sudden death, unexpected cause < 10%, MI, accident, etc

15. Protracted Life-Threatening Illness > 90% • predictable steady decline with a relatively short “terminal” phase • cancer • slow decline punctuated by periodic crises • CHF, emphysema, Alzheimer’s-type dementia

16. Steady Decline, Short Terminal Phase cancer

17. Slow Decline, Periodic Crises, Sudden Death CHF, emphysema, Alzheimer’s-type dementia

18. The Cure - Care Model: The old system D E A T H Life Prolonging Care Palliative/ Hospice Care Disease Progression

19. Palliative Care’s Place in the Course of Illness Life Prolonging Therapy Death Diagnosis of serious illness Palliative Care Medicare Hospice Benefit

20. Common Issues • Need for patient and family-centered care and continuity • Need for clear Treatment Options & Prognosis information • Need to address grief and loss associated with deterioration, decisions and death • Need for recognition and rx of depression • Need for  community resources, support • Need for improved research on palliation

22. Last Acts Report Card, Texas Specific Data • < 25% of Texans die at home (85-90% state preference to die at home) (D) • Pain laws interfere with pain relief (D) • Hospital-based services (“E”) • 31 % of hospitals have pain service • 11% have hospice services • 9% have palliative services • 28% of patients >65 who died received hospice care (C) • Avg hospice LOS is 25 days (optimal LOS= 60 days) (D)

23. Death in the hospital: What do we know about it? • Physical suffering • Poor to non-existent communication about the goals of medical care • Lack of concordance of care with patient and family preferences • Huge financial, physical, and emotional burdens on family caregivers • Suffering in professional caregivers • Fiscal impact on hospitals

24. National data on the experience of dying in 5 tertiary care teaching hospitals The SUPPORT Study • Controlled trial to improve care of seriously ill patients • Multi-center study funded by RWJ • 9000 patients with life threatening illness, 50% died within 6 months of entry

25. SUPPORT: Phase I Results • 46% of DNR orders were written within 2 days of death. • Of patients preferring DNR, <50% of their MDs were aware of their wishes. • 38% of those who died spent >10 days in ICU. • Half of patients had moderate-severe pain >50% of last 3 days of life.

26. Pain data from SUPPORT % of 5176 patients reporting moderate to severe pain between days 8-12 of hospitalization: colon cancer 60% liver failure 60% lung cancer 57% MOSF + cancer 53% MOSF + sepsis 52% COPD 44% CHF 43% Desbiens & Wu. JAGS 2000;48:S183-186.

27. CPR Data • 133/ 209 patients who died in CCU over 18 months received CPR • 133 patients underwent 172 episodes of CPR • One episode was > 2 hours; 5 were > 1 hour; national recommendations are 10-20 minutes • 16 patients survived; no patient who underwent CPR > 1 time survived

28. Frequency and duration of CPR • Implement scoring systems to assist us to recognize patients who will not benefit from CPR • Implement communication tools and mentoring to assist in these difficult communications • Educate about advance directives laws and professional responsibility and liability

29. Tiffany • Suffering (pain, emotional, spiritual, other) • No one knew who she was, what • No one knew what she wanted (no goals of care, advance directive) • Communication issues • Futile treatments- CPR • Dignity issues

30. MISSION The mission of The Methodist Hospital’s Pain and Palliative Care at Program and Supportive Care Consultation Service is to enhance the quality of life for patients and their families by the prevention and relief of suffering, through attention to physical, emotional, social, and spiritual concerns associated with illness or injury.

31. Goals of Palliative Care at TMH • Fully integrate evidenced-based symptom management and palliative care into the care delivery system, and incorporate into the plan of care for every patient. • 2. Ensure optimum comfort to every patient through the facilitation of aggressive pain and symptom management. • 3. Ensure that the patient and family goals of care, wishes, and advanced directives are elicited, incorporated into the plan of care, and carried out.

32. Facilitate programs and systems that address the spiritual, emotional, and psychosocial comfort of patients and families • Assist members of the medical, nursing, and support staff to in becoming knowledgeable about about palliative care/symptom management, and competent in associated skills. • Contribute measurably to increased patient, family, and staff satisfaction. • 7. Contribute measurably to reductions in the cost of care, length of stay, and mortality rate.

33. Palliative Care at The Methodist Hospital • Education • Staff and Physician Education • Patient and Family Education • Community Education

34. Clinical Consultation Service • Spiritual and Bereavement Care • Clinical Care Coordination • Research and Outcome Measures • Funding and Development

35. Edmonton Symptom Assessment Scale (ESAS Numerical Scale) Please circle the number that best describes: No Pain 0 1 2 3 4 5 6 7 8 9 10 Worst Possible Pain Not Tired 0 1 2 3 4 5 6 7 8 9 10 Worst Possible Tiredness Not Nauseated 0 1 2 3 4 5 6 7 8 9 10 Worst Possible Nausea Not Depressed 0 1 2 3 4 5 6 7 8 9 10 Worst Possible Depression Not Anxious 0 1 2 3 4 5 6 7 8 9 10 Worst Possible Anxiety Not Drowsy 0 1 2 3 4 5 6 7 8 9 10 Worst Possible Drowsiness Best Appetite 0 1 2 3 4 5 6 7 8 9 10 Worst Possible Appetite Best Feeling of Well being 0 1 2 3 4 5 6 7 8 9 10 Worst Possible Feeling No Shortness of Breath 0 1 2 3 4 5 6 7 8 9 10 Worst Possible Shortness of Breath Other Problem 0 1 2 3 4 5 6 7 8 9 10

36. A Palliative Care Story Patient Mrs. K 50 years old 126 days in the hospital CA and multiple medical problems Severe neuropathic pain from herpetic lesions in groin High-dose opioids causing problems, but no relief Liver problems/jaundice from TPN Feculent vomiting, hasn’t eaten in weeks Physicians said “there’s nothing more we can do”

37. Palliative Care Consultation for Mrs. K Spending as much time as necessary to find out who she is and what she wants Rigorous symptom and pain assessment “Moving mountains” to get IV methadone Symptom (nausea/vomiting) management Withdrawing unnecessary/unwanted treatment

38. Results of Palliative Care Consultation/Interventions Pain relief Relief from nausea/vomiting From NPO to clear liquids to fried chicken in just a few days TPN discontinued Went to hospital beauty parlor for to have hair done Discharged after 141 days in hospital Died peacefully at home ten days after discharge

39. There is never “nothing more we can do”.

40. “You matter because you are you. You matter to the last moment of your life, and we will do all we can not only to help you die peacefully, but to help you live until you die.” Cicely Saunders, RN, SW, MD Founder, Modern Hospice Movement