2. Robert C. Salinas, MD Associate Professor OU Department of Family Medicine OUMC Palliative Medicine

3. I, ROBERT C. SALINAS, do not have a financial interest/arrangement or affiliation with one or more organizations that could be perceived as a real or apparent conflict of interest in the context of the subject of this presentation.

4.  Describe the changing landscape with regards to people living with serious life-limiting illnesses  Describe the challenges in delivering optimal care for people living with serious life-limiting illnesses  Discuss the role of clinical ethics that guide palliative care at the bedside

5.  Do not fit into the current primary care model of delivery of care  Experience untreated symptoms  Have unmet personal care needs  Experience high caregiver burden

6. Patients with serious life-limiting illnesses often move from one setting to another Goals of care are often not defined when patients cross acute care settings Caregivers on the sending team and receiving team often do not communicate effectively when handing over patient care

7. 1. Diseases of the heart 28.5% 2. Malignant tumors 22.8% 3. Cerebrovascular diseases 6.7% 4. Chronic lower respiratory diseases 5.1% 5. Accidents (unintentional injuries)4.4% 6. Diabetes mellitus 3.0% CDC/NHS, National Vital Statistics System, 2014

8.  Covers palliative and support services for beneficiaries who have a life expectancy of six months or less if the terminal disease with which they have been diagnosed follows a normal course  Agree to forgo curative treatment for the terminal illness (DNR not needed)  Two physicians certify initially

9.  The first hospice benefit period is 90 days  If illness continues to engender the likelihood of death within 6 months, the patient can be recertified for another 90 days  After the second 90-day period, the patient can be recertified for an unlimited number of 60- day periods, as long as he or she continues to have a life expectancy of 6 months or less

10. Death Diagnosis of Serious Illness Hospice Curative Care Palliative Care Lynn, JA. 2004 Bereavement Care

11.  Pain and symptom control  Avoid inappropriate prolongation of the dying process  Achieve a sense of control  Relieve burdens on family  Strengthen relationships with loved ones Singer et al. JAMA 1999;281 (2):163-168

12.  SUPPORT study-9000 seriously ill adults  47% of physicians knew when their patients preferred to avoid CPR  46% of do-not-resuscitate (DNR) orders were written within 2 days of death  38% of patients who died spent at least 10 days in an intensive care unit (ICU)  For 50 % of conscious patients who died in hospital, family members reported moderate to severe pain at least half the time. JAMA 1995; 274(240):1591-1598

13.  What happens:  Chemotherapy (40%)  Emergency department visits (48%)  Hospital admissions (50%)  No hospice referral (35%)  Late hospice referral ( median 16 days)  Consequences  High 30-day hospital mortality  Suffering  Costs  Opportunities lost Temel et al. Cancer 2008: 113:826-33

16.  “The relief of suffering and the cure of disease must be seen as twin obligations of a medical profession that is truly dedicated to the care of the sick.”  “Failure to understand the nature of suffering can result in medical intervention that, though technically adequate, not only fails to relieve suffering but becomes a source of suffering itself.” Eric Cassell, NEJM. 1982;306:639-45

17.  Palliative care is specialized medical care for people with serious illnesses. It is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.  Palliative care is provided by a team of doctors, nurses, and other specialists who work together with a patient's other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment. Center to Advance Palliative Care

18. Death Diagnosis of Serious Illness and goals of care established Hospice Curative Care: optimizes disease-specific treatments Palliative Care: maximizes comfort and quality of life Bereavement Care Integrated Care for Patients with Advance Illness Lynn, JA. 2004

19.  Team-based care  Collaboration with primary physicians  Individualized treatment  Interdisciplinary  Continuity  Intensive communication and support

21.  Began as a pilot program during the middle of October 2013  For a hospital of our size, expected to see 5-10 patients a month the first year  Operates Monday through Friday, 8 am to 5 pm  Led by Clinical Nurse Specialist (CNS) with MD attending support  Consults initiated by telephone, pager, and EPOM  Written consult note with follow-up telephone call  Collaboration with Pastoral Care and Social Work Services

22.  Female = 103  Male= 61  Average age= 58 years (range 18-89)  Race/Ethnicity Caucasian 120 African American 26 Native American 9 Hispanic 4 Vietnamese 3 Filipino 2

24. Number Age Groups

25.  Malignancy  Neurological insult  Liver failure  Sepsis  Heart failure  Pulmonary failure  End-stage-renal-disease  Severe trauma

26.  Symptom management  Pain  Nausea/malignant bowel obstruction  Shortness of breath  Anxiety  Communication  Conflict resolution (patient-family, family-staff)  Goal setting  Process of care/transitions of care  Complex discharge planning  Understanding Hospice Care Benefit 26

27.  Symptom management  Pain  Nausea/malignant bowel obstruction  Shortness of breath  Anxiety  Communication  Conflict resolution (patient-family, family-staff)  Goal setting  Process of care/transitions of care  Complex discharge planning  Understanding Hospice Care Benefit 27

28.  Beneficence (always do good)  Malfeasance (do no harm)  Autonomy (respect individual decision making)  Relational autonomy  Justice (distributive)

29. Respect for human life and death Principle of therapeutic proportionality Principle of double effect o Pain management and sedation Truthfulness in communication o Therapeutic privilege

30.  Gather relevant data (e.g. through discussions with involved parties, examinations of medical records or other relevant documents)  Clarify relevant concepts (e.g. best interest, patient autonomy, informed consent)  Clarify related normative issues (e.g. personal and societal values, policy, norms)  Help identify a range of morally acceptable options within the context.

34.  Unfavorable news in the medical context has been defined as “any news that drastically and negatively alters the patient’s view of her or his future.” Buckman R, How to Break Bad News

36.  LC is a 65 y/o male with a previous medical history of Stage IV Lung adenocarcinoma with likely malignant effusion, PE, DVT, & neutropenia who was admitted with Atrial Flutter that has been unable to wean off a diltiazem drip. Followed by Dr. T in Shawnee, family requests continue seeing him. Palliative Medicine was consulted for "difficult hospice talk".

37.  Doctors emphasize treatment and down play prognosis  Disclose actual beliefs 34% of the time  Withhold prognostic information from 25% of patients  Give deliberately optimistic estimate Christakis NA. 1999

38.  Formulation (or “foreseeing” ) is the physician’s cognitive or objective estimate of the future course of the patient’s illness  Uninformed and certain Informed and uncertain  Affective forecasting  Communication (or “foretelling” ) is the physicians discussion of the prediction with others Glare and Sinclair, Journal of Palliative Medicine 2008

40.  Hope is a belief in a positive outcome related to events and circumstances in one’s life. Hope implies a certain amount of despair, wanting, wishing, suffering, or perseverance– i.e., believing that a better or positive outcome is possible even when there is some evidence to the contrary.

41. The Doctor, Sir Luke Fildes, 1891

42. “Hope is not found in a way out but a way through.” -Robert Frost

43.  CM is a 53 y/o female with a diagnosis of metastatic bladder cancer s/p cystectomy/ileal conduit. Patient was admitted for severe abdominal pain, nausea, and vomiting. She was found to have a UTI and subsequently treated. Pt has had progressive failure to thrive since admission and has had chronically low prealbumin. Patient is a poor candidate for chemotherapy secondary to poor functional status and patient desires aggressive continued care despite poor prognosis.

46.  Mr. BA is a 62 year-old male who was admitted for care of low blood pressure and a gastrointestinal bleed. Complicating his care plan is a diagnosis of metastatic melanoma, with evidence that it has continued to progress, despite treatment efforts with multiple chemotherapy agents. Palliative Medicine was asked to visit with Barry to help with goals of care and the development of a care plan to best achieve these goals.

47.  Patient narratives  Intense listening  What is said  What is not said  Consensus building  Converging narratives  Diverging narratives  Prognosis  Foreseeing the future  Foretelling the future  Decision making  Patient’s wishes  Balance of burden and benefits Karlawis JHT et al AIM.1999;130:835-840

48. Medical Indication What are the facts of the medical history/condition? Patient Preference Is the patient competent? Does he or she comprehend the situation? Quality of Life How might this be interpreted in the context of having a terminal illness? Contextual Features Whose other interest are affected? Kuhl DR, JPM 1999(2); 75-86

49.  Structure the decision-making as a consensus- building process grounded in dialogue among proxy, other close family members, physician, and immediate caregivers  The goal is to achieve consensus about the diagnosis and prognosis, the benefits and burdens of different treatment options; and the meaning of emotionally charged terms, such as “starvation,” “suffering,” “quality of life,” “feeding,” and “dying.”

50.  Identify the main participants in the decision making  Allow the participants to narrate how the patient has come to this stage of illness  Teach the decision makers about the expected clinical course of the patient’s disease  Advocate for the patient’s quality of life and dignity  Provide guidance on the basis of existing data and the clinical experience

51.  Describe the changing landscape with regards to people living with serious life-limiting illnesses  Describe the challenges in delivering optimal care for people living with serious life-limiting illnesses  Discuss the role of clinical ethics that guide palliative care at the bedside

52.  Back, A., et al. (2009). Mastering communication with seriously ill patients : balancing honesty with empathy and hope. Cambridge England New York, Cambridge University Press.  Block, S. D. (2007). "Clinical and Ethical Issues in Palliative Care." Focus Vol V, No 4: 393-397.  Epstein, R. M. and R. L. Street, Jr. (2011). "Shared mind: communication, decision making, and autonomy in serious illness." Ann Fam Med 9(5): 454-461.  Faber-Langendoen, K. and P. N. Lanken (2000). "Dying patients in the intensive care unit: forgoing treatment, maintaining care." Ann Intern Med 133(11): 886-893.  Hallenbeck, J. (2003). Palliative care perspectives. Oxford ; New York, Oxford University Press.  Hallenbeck, J. L. (2000). "Terminal sedation: ethical implications in different situations." J Palliat Med 3(3): 313-320.  Karlawish, J. H., et al. (1999). "A consensus-based approach to providing palliative care to patients who lack decision-making capacity. ACP-ASIM End-of-Life Care Consensus Panel. American College of Physicians-American Society of Internal Medicine." Ann Intern Med 130(10): 835-840.  Kuhl, D. R. and P. Wilensky (1999). "Decision making at the end of life: a model using an ethical grid and principles of group process." J Palliat Med 2(1): 75-86.  Lo, B., et al. (1999). "Discussing palliative care with patients. ACP-ASIM End-of-Life Care Consensus Panel. American College of Physicians-American Society of Internal Medicine." Ann Intern Med 130(9): 744-749. 