Cancer Care Training: A Multidisciplinary Approach to Managing Pain and Palliative Care In Rural Primary Care

1. Cancer Care Training: A Multidisciplinary Approach to Managing Pain and Palliative Care In Rural Primary Care

2. Program Partners Mary Ann Burg, LCSW, PhD Community Health & Family Medicine Dawn Grinenko, MD Community Health & Family Medicine Merry Jennifer Markham, MD Adult Medical Director, UF Cancer Survivor Program Gail Adorno, LCSW, MSW Social Worker, UF Cancer Survivor Program Kendra Siler-Marsiglio, PhD Director Susan Fleming Cancer Program Administrator

3. Why this training, why now? • Growing numbers of cancer survivors require cancer follow-up care and comprehensive health care • Need to increase access for patients to these services in their home communities • Need to increase capacity and skills of rural providers to care for persons with cancer histories

4. National Cancer Survival Rates FIGURE 2-2 Five-year relative survival rates. SOURCE: NCI (2004c).

5. Cancer Incidence and Mortality in Rural North Florida Rate of New Cancers 2002-2006 Rate of Cancer Deaths 2002-2006 Counties with mortality rates higher than state average: Baker , Clay , Dixie, Hamilton, Levy, Madison, Marion, Putnam, Suwannee, Taylor, Union. Putnam County has experienced a RISING trend in cancer mortality:

6. Cancer Survivors By Site of Cancer

7. People With A Cancer History Are Everywhere You Look…

8. Today’s Training Goals: • Discuss the role of the multidisciplinaryprimary care team in cancer care; • Define cancer-related palliative care • Review best practices for screening and treating palliative care needs of rural patients with cancer histories in primary care settings

9. What is the Cancer Experience? • Treatment, and then what? • Fragmented care • Body changes & unexpected symptoms • Emotional rollercoaster • Role changes • Family stress • Financial stress Life “Before and After” Cancer

10. The Cancer Experience Can Also Be… • A cycle of new medical problems • Cancer recurrences • The beginning of the end • A new beginning: • “post traumatic growth” • improved wellness behavior • improved health knowledge

11. Patients Need Comprehensive Cancer Care: • Anti-cancer therapy • Supportive care • Palliative care • End-of-life care • Bereavement care Comprehensive cancer care is ALL care that occurs after a patient is diagnosed with cancer

12. Comprehensive Cancer Care Model Palliative Care Hospice Care

13. Palliative Care Is… “Patient and family-centered care that focuses upon effective management of pain and other distressing symptoms, while incorporating psychosocial and spiritual care according to patient/family needs, values, beliefs and culture(s). The goal of palliative care is to prevent and relieve suffering and support the best quality of life for patients and their families, regardless of the stage of disease or need for other therapies.” NCCN Practice Guidelines in Oncology – v.1.2010

14. Palliative Care Is Also… • Relevant to any type of cancer • Important at all stages of cancer care • Care that can be combined with therapies aimed at remitting or curing cancer, or it may be the total focus of care • Multidisciplinary: members of a palliative care team may include professionals from medicine, nursing, social work, chaplaincy, nutrition, rehabilitation, pharmacy and other professional disciplines

15. Caring for the Patient With A Cancer History in a Primary Care Setting • Intervention for consequences of cancer and its treatment • Coordination of care between specialists and negotiation of care • Assisting patients through care transitions (including hospice care) • Assessment and treatment of acute and chronic health problems • Health promotion • Cancer screening USUAL CARE PALLIATIVE CARE

16. Primary Care Is An Essential Site for Palliative Care Cancer treatment Cancer follow-up Care Cancer recurrence End-of-life care

17. The Primary Care Team: TakingMultiple Roles In Caring for Persons With Cancer PLAY VIDEO: INTAKE SPECIALIST & OFFICE STAFF

18. PLAY VIDEO: INTAKE SPECIALIST & OFFICE STAFF

19. Best Practices 1:Welcoming the New Patient With a Cancer History • Acknowledgment of the cancer history & its relevance • Welcoming patient to their “medical home” • Assisting patient in information gathering • Assisting patient in communication with providers

20. Consider Health Literacy “Health literacy is the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions". • Low health literacy impacts cancer incidence, mortality, and quality of life: • Cancer screening information may be ineffective; as a result, patients may be diagnosed at a later stage. • Treatment options may not be fully understood; therefore, some patients may not receive treatments that best meet their needs. • Informed consent documents may be too complex for many patients and consequently, patients may make suboptimal decisions about accepting or rejecting interventions. (Merriman, Betty, CA: A Cancer Journal for Physicians, May/June 2002)

21. Patients With Low Health Literacy May Have Difficulty With… • Locating providers and services • Filling out complex health forms • Sharing their medical history with providers • Interpreting test results • Knowing the connection between risky behaviors and health • Managing chronic health conditions • Understanding directions on prescription labels PLAY VIDEO: NURSE

22. PLAY VIDEO: NURSE

23. The New Patient Medical History Interview: Cancer-related Components • Type of cancer /stage of diagnosis/current status • Cancer treatments/dates/places/dosages • Treatment-related side-effects • Patient’s beliefs about their cancer and aftermath

24. Possible Cancer Trajectories • Live cancer free for many years • Live long cancer free, but die rapidly of late recurrence • Live cancer free (first cancer), but develop second primary cancer • Live with intermittent periods of active disease • Live with persistent disease • Live after expected death Welch-McCaffrey et al., 1989

25. Definition of Cancer Stage • Stage of cancer • Extent that cancer has spread • Correlated with prognosis • Stages I, II, III, and IV • Varies by cancer type • “Early stage” (stage I and II): mostly curable • “Locally advanced” (stage III): sometimes curable • “Metastatic” (stage IV): rarely curable

26. Types of Cancer Treatments • Surgery • Radiation therapy • Chemotherapy • Immunotherapy • Hormone therapy Treatment type varies by type and stage of cancer

27. Late and Long-term Effects of Cancer • Late effects refer specifically to unrecognized toxicities that are absent or subclinical at the end of therapy and become manifest later with the unmasking of hitherto unseen injury because of any of the following factors: developmental processes, the failure of compensatory mechanisms with the passage of time, or organ senescence. • Long-term effects refer to any side effects or complications of treatment for which a cancer patient must compensate; also know as persistent effects, they begin during treatment and continue beyond the end of treatment. Late effects, in contrast, appear months to years after the completion of treatment. SOURCE: Aziz and Rowland (2003).

28. Common Cancer Effects Can Be Helped With Palliative Care Approaches in the Primary Care Setting Including: • Pain • Fatigue • Anxiety/depression • Sexual side effects PLAY VIDEO: PROVIDER

29. PLAY VIDEO: PROVIDER

30. Pain & Palliative Care Assessment Tools • FACT-G (B, C, M, P) Functional Assessment of Cancer Therapy • http://www.facit.org/about/overview_website.aspx • Patient Comfort Assessment Guide • www.partnersagainstpain.com • Distress Management Screening Tool • www.nccn.org

31. Possible Complaints by Type of Cancer History

32. Patients With Cancer Histories May Have More Functional Limitations SOURCE: Hewitt et al. (2003).

33. Best Practices 2:Responding to Cancer-related Symptoms In Primary Care • Prioritize symptoms and negotiate care plan with patient • Set goals with patient to recover optimal level of functioning and quality of life • Encourage patient, family and caregiver participation in care

34. Responding To Pain Complaints In Patients With Cancer Histories Main considerations: • Type of pain • Assessment of pain and functioning • Steps of analgesic management • Side-effects of pain management • Non-pharmacological pain management

35. Common Types of Cancer Pain • Somatic pain • Visceral pain • Neuropathic pain

36. Treatment induced chronic pain syndromes Levy M, Chwistek M, Mehta RS. Management of chronic pain in cancer survivors. Cancer J 2008;14:401-409

37. Guidelines for Responding to Pain in the Primary Care Setting • Promptly evaluate pain to rule out recurrence or new cancer or other medical problem (x-ray, bone scan, imagery?) • Treat first with analgesics and non-pharmacologic therapies • Refer intractable pain back to oncologist or pain specialist for narcotics and other approaches

38. Steps of Analgesic Pain Management Levy M, Chwistek M, Mehta RS. Management of chronic pain in cancer survivors. Cancer J 2008;14:401-409

39. Common Side-Effects of Pain Management • Constipation from narcotics • Somnolence • Gastrointestinal problems (e.g., dyspepsia or gastritis from NSAIDS)

40. Consider Non-pharmacologic Modalities • Physical therapy • Acupuncture • Hypnosis • Mindfulness-based stress reduction • Cognitive behavior therapy • Guided imagery • Massage

41. Frequent Use of Complementary Therapies After Cancer • Relaxation techniques (44%) • Spiritual forms of healing (42%) • Nutritional supplements (40%) • Meditation (15%) • Massage (11%) • Support groups (10%) • Gansler T, Kaw C, Crammer C, Smith T. A population-based study of prevalence of complementary methods use by cancer survivors. Cancer 2008;113:1048-57.

42. Special Considerations In Pain Management In the Primary Care Setting • Even if you don’t prescribe narcotics in your practice, cancer patients may be taking them under the care of a pain specialist or oncologist • There is a real stigma of addiction among patients and families which can be a barrier to pain control • Patients may be reluctant to take adequate pain medications because they fear being over-medicated and less cognitively sharp

43. Best Practices 3:Pain Management In Palliative Care • Consider patient’s ability to function in usual activities and how to improve it • Consider “double effect” approach to pain and multiple symptoms (e.g., treating anxiety first) • Negotiate goals of care and treatment priorities with patient and family • Coordinate team approach to care

44. Patient and Family Education About Pain Palliation • Relief of pain is important; there is no benefit to suffering with pain. • There are many options to treating pain. • When narcotic drugs are used appropriately to treat pain, addiction is rarely a problem. • Communication with doctors and nurses about your pain is critical. • Pain can be helped with non-pharmacologic therapies

45. Review:Goals of Primary Care Provider With Patients with Cancer Histories • Comprehensive cancer-related history • Surveillance for cancer spread, recurrence • Assessment of medical and psychosocial effects of cancer • Health promotion • Palliative care intervention for consequences of cancer and its treatment • Coordination of care between specialists and negotiation of care • Assisting patients through care transitions (including hospice care) PLAY VIDEO: SOCIAL WORKER

46. PLAY VIDEO: SOCIAL WORKER

48. Psychological Impacts of Surviving Cancer • Fear • Feelings of isolation • Ambivalence about completing treatment • Coping with permanent disabilities • Realization of lost opportunities • Unanticipated depression when recovery is supposed to be a “good thing” • Anxiety associated with checkups • New meaning to life (“Post-traumatic growth”)

49. Psycho- Social lmpactsof Cancer

50. Risk Factors for Psychological Distress in Survivors • Unexpected symptoms • No discussion of cancer within the family • Family problems • Low social support • Pain and/or fatigue • Co-morbidity • Impaired professional work • Previous psychiatric problems *Massie MJ. Prevalence of Depression in Patients With Cancer. J Natl Cancer Inst Monogr 2004;32:57–71.