Palliative Care in Behavioral Health Chaplaincy

1. Palliative Care in Behavioral Health Chaplaincy Greg Robins, PA-C, MS Palliative Care Services at Thomasville and Kernersville Medical Centers

3. Objectives: • Introduction to palliative care and dementia • The role of the chaplain in palliative care • The importance of Advance Care Planning • Address the challenges of providing palliative care in the Geriatric Behavioral Health Unit • Discuss competency with Deb Love • When to transition to hospice care

4. What is Palliative Care? • Specialized care for people with serious illness • Any age, any stage • Alongside curative treatment • Goal is to improve quality of life for patients and families • Palliative Care is a team sport • Focus on relief of symptoms and defining goals of care • “Where are we, and where do we go from here?” • Palliative care works to improve communication between patients, their families, and other members of the medical team.

5. Palliative care is NOT: Giving up For cancer patients only A substitute for primary or other specialty care Stopping curative treatment Withholding or withdrawing treatment The same as hospice Palliative care provides an extra layer of support for patients with serious illness and their families

6. Where can I find Palliative Care and who qualifies? • Most palliative care is provided in the acute setting (in hospitals) • Also provided in outpatient clinics, skilled nursing facilities, and less commonly in the home • It is appropriate at any age or stage in a serious illness and can be given along with curative treatment • Most frequent diagnoses include metastatic cancer, Congestive Heart Failure, COPD, renal failure, and dementia • Questions? Ask a medical provider if the patient would benefit

7. When is palliative care right for patients? • Quality of life is suffering because of illness despite ongoing treatment • Uncontrolled symptoms, such as nausea, anxiety, shortness of breath, or uncontrolled pain are a problem • There are increasing trips to the doctor’s office or emergency room • Information provided by the doctor was confusing and hard to understand for the patient and/or family • Patient, family, and medical team are not on the same page and need assistance defining goals of care • A patient or family needs help understanding options for care or treatment

8. When is palliative care right for the medical team? • Disconnect between patient, family, and medical team expectations • Would you be surprised if the patient died within the next year? • Recurrent hospital admissions with poorly managed symptoms • Family and patient are perceived as frustrating to care for by members of the medical team

9. Meet Ann: • 75 year old with dementia admitted from home after she became increasingly aggressive verbally and then physically with her husband and children. • Alzheimers dementia diagnosed 4 years ago. Initially just memory problems but then behavior changed. • More recently paranoid, accused her husband of having affairs. Threatened to hurt him with a knife. • Brought to the emergency department by police. • Involuntarily committed to a Geriatric Behavioral Health Unit. Palliative care consult requested.

10. What is a Geriatric Behavioral Health Unit? • Geriatric Behavioral Health is a field of medicine dedicated to the diagnosis and treatment of mental disorders in older adults. • Includes dementia, depression, anxiety , sleep disorders, and late life schizophrenia • Geriatric psychologists are the primary treating physicians • Other health professionals assist to provide comprehensive management of co-existing medical problems • GBH Unit provides inpatient care for patients with acute needs that cannot be met in an outpatient setting

11. Challenges of Palliative Care in Behavioral Health • Dosing and adjusting medications to modify behavior is a slow and imprecise process with cumulative side effects that vary by patient • Dementia and related symptoms continue to progress over time • Emotionally and physically demanding group of patients. Nurses, CNA’s, therapists have difficult jobs requiring endless patience and creativity

12. Challenges of Palliative Care in Behavioral Health • Patients generally unable to participate in discussions regarding goals of care and decision making. • They are unable to describe symptoms or tell you what is wrong making diagnosis of medical problems difficult • Often non-compliant, unable to participate with therapists • Family access to patients and providers often limited when hospitalized making communication difficult • Family frustration with lack of understanding about dementia and limited treatment options

13. What is dementia? • Defined as a gradual decline in cognition from prior level of function that is severe enough to interfere with daily function and independence. • Advanced dementia is a terminal illness with a well characterized clinical course • Loss of recent memory, disorientation, sleep disturbance • Problems with language, calculation, abstract thinking and judgement • Personality changes with depression and anxiety • Delusions and hallucinations

14. Dementia by the numbers: • Recent estimates: 5.7 million patients in the US in 2018 with projection of 16 million by 2050 • 1 in 3 seniors dies with dementia • 5th leading cause of death in persons over age 65 • 18.4 billion hours of care provided by unpaid family and friends valued at $232 billion • Someone new develops dementia every 72 s in the US • Prognosis variable, general range of 3-8 years from diagnosis Alzheimers Association Website: 2018 AD Facts and Figures

15. Causes of dementia: • Alzheimer’s disease (AD) - 60-80% • Vascular dementia - found in about 40% and most often mixed with other types • Dementia with Lewy bodies - about 15% • Fronto-temporal lobar degeneration - less than 5% • Mixed dementia • Parkinson’s Disease

16. How do we treat dementia? • Not well • Treatment options limited to drugs that have been around for decades and can slow the disease process in some patients but do not provide a cure • Tend to focus on supportive care and symptom management • Researchers are hopeful that advances in understanding the pathophysiology of dementia causes will lead to more effective interventions

17. What is delirium? • Defined as an abrupt disturbance in attention and awareness that developed over a short period of time (hours to days) • “Acute confusional state” and “encephalopathy” are synonyms • Often reversible with a distinct cause such as infection, medication, severe emotional stress, dehydration, metabolic changes • Patients can have delirium and dementia at the same time

18. Who Provides Palliative Care? An interdisciplinary team that works along with the patient’s existing medical providers and may include the following: Medical Providers: MDs, NPs, PAs Nurse Navigator Palliative Counselor Chaplain Staff Nurses Case Management Pharmacy Nutritionist Speech Therapy Respiratory Therapy Physical or Occupational Therapist Volunteers Novant Health: (C3) Empowering Patients through Choices and Champions 1/22/2019

19. What services will the palliative care team provide? A palliative care consultation begins by getting to know the patient, learning what is most important to them and their family, and reviewing the status of their medical problems, related symptoms and establishing goals of care • Assist with understanding of illness and what to expect • Expert pain and symptom management • Assistance with complex decision making and guidance for treatment choices based on individualized goals • Emotional and psychosocial support for patient AND family • Assist with advance directives • Promote dignity, comfort, and quality of life • Facilitate communication with other members of the medical team

20. Eight Domains of Palliative Care

21. Involvement with patient, family, medical team, friends, and outside spiritual support provides unique perspective and insight into the domains of palliative care Establish values and beliefs of the patient/family Assess and meet spiritual needs Explore meaning, purpose, and support system Facilitate discussions and documentation regarding goals of care and advance care planning. Role of the Chaplain in Palliative Care:

22. Reflects educated compassion - integrating the total pain, including medical, psycho-social, spiritual and emotional compassionate response Offer support with ethical mediation, including the understanding of futile care Serves as an emotional broker while holding various emotions and facilitating communication Provides moral distress diffusion for staff, care recipients, and family Role of the Chaplain in Palliative Care: from Board of Chaplaincy Certification Inc website on Certified Pal Care and Hospice Chaplains

25. Initial Palliative Care evaluation includes: • Review of past medical and family histories • Review of systems • Physical examination • Review of medical records, lab work, imaging studies

26. Initial Palliative Care Evaluation includes: • Palliative Care Social History • Who is the person behind the illness? • Family/Community Support • Financial support • Care giver stress level and support • Practical assessments on domestic needs, transportation, and dependent care.

27. Initial Palliative Care Evaluation includes: • Palliative Care Spiritual History • Hope and meaning • Core values and beliefs. Important religious practices • Connecting with available chaplains/clergy • Important to extend similar consideration to the family and care givers who carry a considerable burden as well • Spirituality can influence medical decision making

28. The case for a good spiritual history: • 75% of patients want physicians to ask about their spirituality but report that only 10-20% do • 77% of physicians believe patients should share their religious beliefs with them • 96% believe spiritual well being is important to health • Greatest barriers to discussing spiritual issues per physicians? • lack of time 71% • lack of training 59% • difficulty identifying patients who want such a discussion

29. Palliative Care approach to spiritual history: • FICA spiritual history tool often used by providers • F - Faith and belief: Do you consider yourself spiritual? • I - Importance: What importance does spirituality have in your life? • C - Community: Are you part of a spiritual or religious community • A - Address: How would you like me, your health care provider to address these issues in your health care?

30. Initial Palliative Care Evaluation includes: • Evaluating cultural needs • Failure to understand or respect cultural differences may create a barrier to effective care including management of acute symptoms at end of life • Language barriers can be challenging • Death may not be openly discussed in some cultures • Approaches to pain and its treatment can vary • Expression of emotion can vary from stoic to manic

31. Initial Palliative Care Evaluation includes: • EstablishGoals of care: Where are we and where do we go from here? • Does the family have an accurate understanding of the disease process and prognosis? • Review of disease process and discussion regarding symptoms of advanced disease. • Are the family and medical team working towards the same goal? Are they on the same page? • If not, how can we help them get there?

32. Shared Decision Making • Invited patient and family to participate • Present options • Provide information on benefits and risks • Assist patient in evaluating options based on their goals and concerns • Facilitate deliberation and decision making • Assist with implementation

33. Meet Ann again: • 75 year old with dementia admitted from home after she became increasingly aggressive verbally and then physically with her husband and children. • Alzheimers dementia diagnosed 4 years ago. Initially just memory problems but then behavior changed. • More recently paranoid, accused her husband of having affairs. Threatened to hurt him with a knife. • Brought to the emergency department by police. • Involuntarily committed to a Geriatric Behavioral Health Unit. Palliative care consult requested.

34. Ann: 75 year old with dementia and aggressive behavior • Initial palliative care assessment soon after admission: • Lives with her husband Charles who notes she has had difficulty swallowing food and at times medication. She has developed intermittent urinary and fecal incontinence. • Increasingly frustrated caring for her at home and feels guilty he cannot meet her ever increasing needs • Review latest head CT scan results showing evidence of vascular changes. • Strong Baptist faith. Chaplain follows to provide support

35. Ann: 75 year old with dementia and aggressive behavior • Family meeting to address goals of care with husband and daughter: • They are hopeful to take her home if the aggressive behavior improves and would consider placement if not • Discuss signs and symptoms of progressive dementia. Looking back the family realizes her dementia is more advanced than they thought. • She has a living will and Health Care POA documentation. Husband would not want CPR but would consider intubation “if she can recover” • Discussion is documented in an Advance Care Planning Note

36. Advance Care Planning: • Process of understanding and sharing personal values, life goals, and preferences regarding future medical care. • Purpose is to insure patients receive care that is consistent with their preferences. • Identifying a surrogate decision maker • Goals of care conversations with patient and family • Discussing how aggressive to be with medical interventions and code status • Documentation of goals of care and advanced directives in the medical record

37. Advance Care Planning: • Advance directives: document by which a person makes provision for health care decisions if they are unable to make those decisions in the future. • Health Care Power of Attorney • Living Will • Psychiatric Advance Directives NC Advance Instruction for Mental Health • Physician orders for life sustaining treatment • MOST and DNR forms

38. Advance Care Planning: NC MOST form

39. Advance Care Planning: • Discuss disease progression and potential complications. • Solicit treatment preferences before complications arise, if possible. • Any member of the care team can document advance care planning discussions • IMPORTANT that such documentation is readily accessible and easy to find.

41. Ann: 75 year old with dementia and aggressive behavior • Psychiatry team works to adjust medications to modify aggressive behavior • Internal medicine team treats acute medical problems and manages chronic problems including diabetes • Palliative care helps with symptom management and assists with communication between the family and medical team. • Day 4, Scheduled low dose acetaminophen added for knee pain contributing to discomfort • Chaplain provides support for patient and family

42. Ann: 75 year old with dementia and aggressive behavior • Day 7, aggressive behaviors improve with medication but she becomes increasingly weak and lethargic • Diagnosed with urinary tract infection. Requires IV fluid hydration and antibiotics with initial improvement • More alert but does not regain the ability to walk. • Swallowing problems progress. Diet changed to pureed foods. • Day 21, Family frustrated by lack of improvement and concerned they will not be able to take her home

43. Functional Assessment Staging (FAST) for dementia:

44. Behavioral Disturbances - profoundly affect patients and their families. Examples: Dementia related medical complications: delusions hallucinations depression agitation sleep disturbances • Treatment includes: • search for an underlying cause aside from dementia such as infection, medication toxicity, pain, poor sleep, fear, poor vision or hearing. • Non pharmacological therapies like distraction, redirection, structured routines, music, and behavioral interventions such as avoiding environmental triggers • When needed medications.

45. Dementia related medical complications: • Dysphagia - eating problems are a hallmark of advanced dementia that lead to protein calorie malnutrition • Pocketing or spitting food, difficulty swallowing/aspiration or losing interest in food are common • Treatment includes diet and behavior modification, supplements • FEEDING TUBES DO NOT HELP

46. Dementia related medical complications: • Loss of mobility - weakness, unaware of safety limitations with instability and increased risk for falls and complications such as hip fractures • Patients become essentially bed bound with associated skin breakdown, ulcers • Treatment is largely supportive including repositioning and wound care

47. Dementia related medical complications: • Pain and shortness of breath (dyspnea)- Distressing symptoms are common and may be unrecognized. • Pain measurement is challenging in patients with advanced dementia. Try looking at their forehead/facial expressions, body language, ability to be consoled. • Treatment can be non pharmacologic and pharmacologic. Medications can add to sedation.

48. Dementia related medical complications: • Urinary and fecal incontinence - initially need assistance with toileting but eventually require adult diapers • Contributes to skin break down and recurrent infections • Long term foley catheterization is not beneficial • Constipation - causes discomfort and behavioral changes. Difficult to diagnose if not looking for it.

49. Dementia related medical complications: • Infection and fever - very common in advanced disease accounting for 1/4 of all treatment decisions and often terminal events • Infection can alter behavior/alertness • Can be difficult to diagnose and determine a source • Over treatment is a problem with an estimate 80% of suspected Nursing Home treated UTI’s lacking minimal criteria to justify treatment • Aspiration Pneumonia and Septicemia are deadly

50. Palliative concerns for patients with dementia: • Family requires support and assistance with symptom management • Ongoing education about what to expect as dementia progresses • Important to readdress goals of care as the patient and quality of life decline • hospitalizations are traumatic and often unnecessary