Palliative Care in Behavioral Health Chaplaincy - PowerPoint Presentation

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

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

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.

Palliative care provides an extra layer of support for patients with serious illness and their families 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

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

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

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

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.

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

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

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

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

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

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

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

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

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

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

Eight Domains of Palliative Care

Role of the Chaplain in Palliative Care: 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: 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 from Board of Chaplaincy Certification Inc website on Certified Pal Care and Hospice Chaplains

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

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.

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

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

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 communityA - Address: How would you like me, your health care provider to address these issues in your health care?

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

Initial Palliative Care Evaluation includes: Establish Goals 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?

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

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.

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

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

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

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

Advance Care Planning: NC MOST form

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.

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

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

Functional Assessment Staging (FAST) for dementia: Stage Features 1 No objective findings 2 Subjective complaints of forgetting 3 Decreased job functions, difficulty traveling 4 Decreased ability performing complex tasks 5 Requires assistance to choose proper clothing

Dementia related medical complications: Behavioral Disturbances - profoundly affect patients and their families. Examples: 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.

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

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

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.

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.

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

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

Ann: 75 year old with dementia and aggressive behavior Day 28 with continued overall decline. Choking on her food. Diagnosed with aspiration pneumonia, dehydration. Develops shortness of breath that makes her uncomfortable. Family meeting to readdress code status and goals of care. Code status changed to DNR/DNI with a focus on comfort and quality of life and would like to consider taking her home for end of life care

Ann: 75 year old with dementia and aggressive behavior Started on low dose as needed oral morphine for dyspnea (shortness of breath) Non comfort medications discontinued including antibiotics. Hospice consult arranged. Family decides to take her home under hospice care with the option to transfer to inpatient hospice if symptoms cannot be managed

Transition to Hospice Care? Hospice care can begin when the focus transitions to managing symptoms and maintaining or improving quality of life rather than curing disease. Hospice care is provided in any home setting including private residence, nursing home, assisted living, and group homes Patients have a potential life expectancy of 6 months or less Hospice care also relies on an interdisciplinary team but provides more comprehensive services that include: In home nursing care with 24 hour availability by phone Financial coverage of medications related to the admitting illness Durable medical equipment such as hospital beds, home oxygen, and wheelchairs

Additional hospice services: When needed for more complex symptom management hospice can admit to a general inpatient hospice service such as a hospice home Home based continuous nursing service for management of acute symptoms is a possibility Temporary respite care in a local hospice facility to give the caregiver a rest from responsibilities

Common questions and hospice misconceptions: Is hospice a place? No, it is a model of care Do patients have to be actively dying to receive hospice care? No What happens if the patient is still alive after 6 months? Reevaluated by hospice staff and allowed to continue if appropriate Dose hospice care hasten death? No, there may be a survival advantageDo I have to give up my primary doctor? Maybe

Criteria for Dementia patients to start Hospice care Stage Features

Benefits of Hospice care for advanced dementia patients: Lower probability of hospitalization during the last 30 days of life Higher probability of regular treatment for daily pain Greater family satisfaction with care Improved family support and resources

Palliative Care Approach Medicare Hospice Benefit Life Prolonging Care Old Palliative Care Bereavement Hospice Care New Dx Death Population Health care and coordination Common Disease Categories Cancer Heart Failure COPD Renal Disease Advanced Dementia 6 – 12 months PC Specialist Life Prolonging Care Generalist PC

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

Objective Review: Introduction to palliative care Specialized medical care for patients with serious illness Focus on improving quality of life for the patient and family Provides an extra layer of support at any point during the disease process Assists with defining goals of care and making medical decisions Palliative care is team sport with an emphasis on communication and coordination of care

Objective Review: Role of the chaplain in palliative care: Plays a central role in establishing values and beliefs of the patient and family Assesses spiritual needs, explores meaning and purpose Facilitates communication between the patient, family, medical team, and outside resources Assists with ethical mediation, advance care planning discussions, and documentation of advanced directives Provides support for family and patient as they face each stage of illness and make difficult decisions about medical care Provides emotional support for the medical team

Objective Review: Introduction to dementia: Defined as a gradual decline in cognition from a prior level of function that interferes with daily function and independence Advanced dementia is a terminal illness with a well characterized clinical course Increasingly common with limited treatment options Often difficult and upsetting for families to accept end stage symptoms Delirium is a more acute change that is generally reversible with a definable cause

Objective Review: Advance Care Planning - process of understanding and sharing personal values and preferences regarding future medical care Cornerstone of high quality palliative care for dementia patients Identifying surrogate decision maker Goals of care conversations including how aggressive to be with care Completion of Advance directives DOCUMENTATION of the above

Objective Review: Challenges of providing palliative care in geriatric behavioral health: Patient often unable to tell you what is wrong or participate in decision making Patient often non compliant Treatment process is slow and unpredictable which is frustrating for the family Family access limited which makes communication difficult

Objective Review: Transition to hospice care: Can begin when the focus of care transitions to managing symptoms and maintaining or improving quality of life rather than curing disease Potential life expectancy of 6 months or less Hospice can follow at home or nursing facility Option to transfer to inpatient hospice facility for acute symptom management or respite care. Hospice adds comprehensive nursing, medication and medical equipment coverage to palliative care

We want to help “all of those other days” be as good as possible.

Questions?