1. Tina Castañares, MD Medical Director, Hospice of The Gorge, Hood River & The Dalles, Oregon Family Physician, La Clínica del Cariño, Hood River & The Dalles, Oregon SUPPORTING FARMWORKER FAMILIES AS THEY CONFRONT DEATH AND DYING 20 th Annual Midwest Stream Farmworker Health Forum Austin, Texas November 20, 2010

2. Three important TRUTHS We will all die. Dying is as natural as being born. There is such a thing as a Good Death, and it is worth planning for.

3. Some unfortunate myths Death is a failure of the health care system. There’s really no good way to predict when a person will die, and no reason to try. Having a doctor immediately available will make it likelier you won’t suffer at the end. Discussing death frankly can make it happen sooner and is always “bad news.” It’s better not to know that you have a fatal illness. “Doing every treatment possible” is what we owe to our loved ones before we “give up.”

4. So let’s remember those three important TRUTHS again: We will all die. Dying is as natural as being born. There is such a thing as a Good Death, and it is worth planning for.

5. Main emphasis today: For MSFWS : special challenges around death and dying What hospice and palliative care can offer, and what barriers exist Migrant health centers and community health workers help bridge the gaps

6. Especially for clinicians: Symptom management and referral strategies to: Prognosticate better (estimate life expectancy) and anticipate problems Provide comfort Prevent or treat suffering Avoid unwanted hospitalizations and crises at the end of life

7. Challenges around death and dying for FWs & families: Common to most human beings: Sickness, fear and suffering Mortality and loss Special for migrant people: Displacement from homeland Separation from loved ones Cultural dislocation from known rituals and settings

8. Challenges around death and dying for FWs & families: Accentuated in FW populations: Uninsurance, poverty, lack of access, lack of health care home, linguistic and educational barriers  delayed detection, diagnosis, & treatment  disparities, inequities, injustice associated with premature disability & death

9. Challenges around death and dying for FWs & families: Accentuated in immigrant populations: All of the above, plus fear of seeking treatment (deportation/legalization fears, etc.) Lack of insurance far higher than in non- immigrant farmworkers Cultural beliefs and practices – assets and drawbacks

10. Challenges around death and dying for FWs & families: Especially accentuated in immigrant ELDERLY populations: The nation’s uninsured elderly: 422,000 seniors 65+ y/o were uninsured in 1999 (=1.3% of the US elderly) disproportionately seniors of color (36%) >45% were born outside the US

11. The national forecast… Legal immigrants account for almost 1/2 net annual increase in US population. Most will hit Medicare age just after baby boomers, and become eligible 5+ years after legal entry. (But what if they need our care sooner? And what about the “non-qualified” who may never be eligible?)

12. And more immigrant seniors may be uninsured in future: In California, 2000…trends appearing? 2% of elderly were uninsured. BUT…. Rates exceeded 5% in 7 of 80 assembly districts and 3 of 26 senate districts. Some districts had as high as 8% uninsured among their elderly.

13. Let’s return to the subject of questions of cultural assets and potential barriers…

14. Cultural beliefs and practices, assets and obstacles: Typical assets and strengths Spiritual faith Family support & caregiving Culture of caring for elders Generally positive grief and bereavement, perhaps from culture of “keeping ancestors alive” resignación, fatalism

15. Cultural beliefs and practices, assets and obstacles: Typical obstacles or challenges in USA: Fear of vs. undue faith in hospitals Religious beliefs: suffering as punishment Differences from U.S.“mainstream” about who makes health care decisions, who should even know diagnosis or prognosis, or speak openly of dying Stoicism about symptoms, expressing pain Reluctance to allow strangers in the home

16. Social realities Most FWs who die from chronic illness die in hospitals, in medical crisis, attended by specialists, bewildering technologies and English-speaking staff. Probably most MSFW patients & families would prefer a peaceful death at home. The hospice and palliative care movements have scarcely begun to serve minority citizens, and are a long way from serving Latino and immigrant MSFWs.

17. Some realities = opportunities The hospice and palliative care movements are growing due to the “graying of America.” These movements earnestly wish to become more culturally proficient, and diverse. Most hospice and palliative care organizations don’t yet have partnerships or much involvement with clinics, M/CHCs, or other community agencies.

18. CASE STUDY María A, 66 y/o retired SFW in rural Idaho, uninsured (but actually Medicare-eligible) 1 year of increasing GI distress, mixed sx Positive stool test for blood @ dr’s office Charity care colonoscopy obtained, labs, scans Advanced colorectal cancer (Stage IV) with distant spread Prognosis (estimated life expectancy) 5-6 months

19. One way it could go… Husband says not to tell her. “We will come back for medicines.” “I will take care of her at home.” Pain insufficiently treated. Pt suffers at home. Family and pt do not discuss facts and future. No return to dr’s office. Elderly husband overwhelmed when pt develops intestinal obstruction.  E.R., N-G tube, IVs, ICU admission twice).  On 2 nd hospital admission, pt dies in ICU.

20. A different way it could go… Linguistically/culturally appropriate care at M/CHC (pt’s medical home) includes education, sx control & case management. Hospice referral made, explained; accepted. Spanish-language support facilitated, coordinated in partnership of agencies. Physical suffering largely prevented. Family support, spiritual support….

21. A different way it could go… … Medication provided for obstruction when it develops (no tubes). Hospice social worker assists with funeral arrangements, Medicare eligibility determination, other planning. Pt dies quietly with good pain control four months after dx, at home, family present, priest had visited. Hospice personnel assist bereaved husband & family for > 1 year.

22. What is “palliative care”? Comfort care, symptom management, supportive services. Distinct from curative care, chronic disease management, acute care or preventive care Goals of care are different than in most of health care and public health.

23. Some common examples of palliative care Alleviation & prevention of physical pain and other sx (nausea, constipation) with combinations of potent medicines Supplies and equipment for home comfort Education of pt and family for energy conservation, maximum quality of life “respite” time for caregivers Spiritual care and support

24. Who does “palliative care”? A growing movement But not yet taught very much in health professional training programs Strongest group of providers are hospices Some RNs, doctors & others now specialize Some programs (inc. pre-hospice), though funding is not generally available

25. What is “hospice” in the USA? Mostly home-based service (inc. nursing homes, etc.) – few “hospice houses” except in large cities Serves people with <6 months life expectancy, and their caregivers/ families Holistic, palliative care delivered by teams

26. What does a hospice team consist of? Interdisciplinary Nurses, doctors, social workers, chaplains, bereavement counselors, volunteers, home health aides, homemakers, primary care providers, pharmacists…and the pt! Each patient’s plan of care reviewed by the team at least once every 2 weeks

27. How are hospices funded? Mostly by Medicare Other insurance (inc. Medicaid) copies Community donations Per diem (per day) paid by insurer to hospice agency, to cover all services related to the terminal diagnosis Very regulated (certification, etc) but no involvement with immigration status!

28. The hospice movement and diversity/cultural proficiency Striving, but still mostly Anglo, Eng- speaking workforce serving Eng- speaking Anglo pts Future of its workforce in West = Latino Unaccustomed to uninsurance, immigration Often unfamiliar with agencies serving special populations

29. Why should all this matter to FWs? MSFWs unlikely to be acquainted with palliative care and hospice MSFWs may face access barriers MSFWs’ health care homes may not yet be partnered with area hospices Area hospices may be hard pressed to serve uninsured pts (but may not be☺)

30. What can we do to help? M/CHCs and primary care providers **educate pts, families and caregivers **help with prognosis, discussions, advance directives, durable POA, POLST forms **ensure care coordination (don’t let specialists take over) **work with area hospices & palliative care organizations pro-actively

31. Partnering pro-actively Staff and leaders: meet together Community needs assessment Community outreach Grantseeking for programmatic work and “charity care” Cultural proficiency expertise

33. Community health workers and the hospice movement’s future A natural fit with America’s changing demographic A natural fit with health promotion, advocacy, care coordination, outreach, community needs assessment, capacitation of agency staff

34. One hospice agency’s experience: 1981-2006: served one Spanish- speaking family Area approx. 25-30% now, mostly 1 st generation immigrants and their native-born children. United Way grant project started in 2006….

35. Two CHWS hired part-time: First stage = capacitation of CHWs Second stage = community needs assessment (survey, other) by CHWs Second stage = preliminary outreach! Third stage = development of language, approach, materials Fourth stage = contractor for analysis, recommendations for future

36. Outcomes and current activities: development of Hispanic Outreach Team beginning of development of bilingual staff response capability Events outreach continuing 2006-2010: Fourteen patients and families served with hospice care; six with pre- hospice or non-hospice palliative care

38. Tips & pearls from the palliative care field Give aggressive, pro-active pain and symptom management without fear. Keep it simple: opiates (methadone, morphine sulfate) following the WHO pain management ladder; benzodiazepines for anxiety/agitation/ insomnia; prochlorperazine & haloperidol for nausea; aggressive bowel regimen Be aware of methadone’s superiority, and educated/respectful of careful rotation and titration. Beware of fentanyl, combination drugs, proprietary drugs.

39. Tips & pearls from the palliative care field, continued Skin breakdown may be inevitable. Decubitus ulcers may never heal. When people don’t eat or drink as they die, they’re not thirsty or hungry…don’t give IV fluids, etc. Before considering more procedures, consider the burdens…and compare to Rx options.

40. Tips & pearls from the palliative care field, continued Dexamethasone (etc.) has multiple benefits – for nausea, well being, appetite stimulation, energy, pain management (capsular, bone, other). Careful in CHF. Octreotide (Sandostatin™) = “medical NG tube” in intestinal obstruction. Transfusions, thoracentesis, paracentesis…all have diminishing returns. Palliative radiation, nerve blocks, etc. useful but with risks, rebound, time issues…

41. Tips & pearls from the palliative care field, continued Pay attention also to the health status of caregivers and survivors. TEAMWORK! Much suffering is existential/ spiritual, not “medical.” Prognostication is ethically and intellectually compelling. Quality of life trumps length for most pts. Translate hope… hope for ….???

42. Why prognosticate? Medical ethics and everyday ethics Patient self-determination Telling the truth, sharing our knowledge Optimizing QUALITY OF LIFE during one’s remaining lifespan Optimizing the QUALITY OF DEATH AND THE DYING PROCESS Determination of hospice eligibility (initial/recertification) Planning for the future yPhysically/Medically yEmotionally ySpiritually yFinancially (wouldn’t you?) and legally yGrieving process yClosure yAdvance Directives, Health Care Representatives, POLST

43. But we’re not doing it enough. One example: 326 cancer pts admitted to Chicago hospices; 311 desired survival estimate (px); physicians calculated px in 300 of them Physicians reported that they would not communicate any px in 27% of cases, would communicate their px in 37%, and would communicate a different px 40% of the time (70% optimistically discrepant, mostly in young) I.E., no estimate + conscious underestimate or conscious overestimate = 63% of the time --Ann Int Med 2001: 134: 1096-1105 Lamont & Christakis

44. Why don’t we prognosticate more? Our own discomfort broaching subject of death Fear of erring in either direction Uncertainty about the patient’s wish to know Cultural, linguistic differences Bad experiences in the past (“He told her 10 years ago she had 2 months to live.”) Insufficient knowledge or skill at it Not enough time for the conversation We think it’s ambiguous, uncertain, indeterminate – not that clear at all “Everybody’s so different; who am I to say?” “It’s not up to me; the specialist needs to tell them”

45. Why don’t we prognosticate more? “I don’t want to take away their hope.” “I don’t want it to be a self-fulfilling prophecy.” “I don’t want them to feel I’m abandoning them.”

46. Regarding hope: Hope is relative Different kinds of hope: *hope for cure *hope for symptom relief and comfort *hope for reaching benchmarks *hope for improved quality of life *hope for resolution/reconciliation *hope for spiritual growth, peace

47. We are interventionists by nature

48. Units of time “ Days to weeks,” “weeks to months,” “a year or more,” etc.  much better than nothing, though often not good enough Example: 75 y/o former FW dying in Moses Lake, WA of metastatic colon CA. Ambulatory but declining. Pain and nausea increasing. Son wants to come from Mexico, with only 2 weeks he can be here. Which 2 weeks will it be?

49. How to prognosticate better a topic of its own many tools for clinicians, free &on-line It’s a matter of deciding to sharpen our skills (the science and art) to do it. Write to me and I’ll share more. A clinical topic for next forum?

50. If you can read just one elective professional book this year, consider: And use this resource: http://www.medscape.com/view article/578918 from Family Practice ManagementFamily Practice Management “Discussing End-of-Life Care With Your Patients” Posted 08/20/2008 Jerry L. Old, MD

51. Caregiver health http://www.ama- assn.org/ama/pub/category/5099.html http://www.ama- assn.org/ama/pub/category/5099.html 16% overall report worse health >50% of Alzheimers caregivers report psychological distress 40% have new financial burdens

52. Three important TRUTHS We will all die. Dying is as natural as being born. There is such a thing as a Good Death, and it is worth planning for.

53. for participating today. I welcome your feedback. Tina Castañares, MD 3301 Kollas Road Hood River, Oregon 97031 tina.castanares@gorge.net