Laura S. Meiki, LMSW, Doctoral Student LNHA Social Services Designee / Director Workshop June 21, 2012

It's strange that they fear death. Life hurts a lot more than death. At the point of death, the pain is over. - Jim Morrison

OBJECTIVES Provide an overview of hospice and palliative care in the nursing home setting Discuss the role of social services with hospice patients Clarify LaPOST and advance directives Highlight current trends and issues in hospice/ palliative care

Introduction / terminology HOSPICE Designed to give supportive care to people in the final phase of a terminal illness. Focuses on comfort and quality of life, rather than cure. The goal is to enable patients to be comfortable and free of pain, so that they live each day as fully as possible. Aggressive methods of pain control may be used. Provides holistic care - support for the patient's emotional, social, and spiritual needs in addition to medical symptoms as part of treating the whole person. Family and loved ones are included in care.

PALLIATIVE CARE To palliate means to make comfortable by treating a person’s symptoms from an illness. The World Health Organization (WHO) defines palliative care as “… an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual ” (World Health Organization [WHO], 2007 ). Source:

PALLIATIVE CARE/HOSPICE Palliative care is not the same as hospice. Hospice provides palliative care, but one need not be in hospice to receive palliative care. Palliative care can be provided at any stage of a disease process. A patient may receive palliative care at the same time as curative treatment.

HOSPICE ELIGIBILITY Diagnosis by two physicians (usually the patient’s PCP and the hospice medical director) of a terminal illness with a life expectancy of six months or less Philosophical shift from curative to palliative care Patient and/or family agrees to hospice care SOURCE:

DIAGNOSES FREQUENTLY REFERRED TO HOSPICE Cancer Heart disease Pulmonary disease Dementia Liver disease Renal disease HIV/AIDS Parkinson’s disease SOURCE: University of California Academic Geriatric Resource Center

WHEN IS A PATIENT WITH DEMENTIA HOSPICE – APPROPRIATE? * To be enrolled in hospice, ALL of these signs and symptoms must be present: Unable to walk without direct assistance Unable to dress themselves Need help for bathing and grooming Unable to control bowel and bladder Might use some language, but are unable to converse effectively *NOTE: This diagnosis can only be provided by a physician SOURCE:

WHEN IS A PATIENT WITH DEMENTIA HOSPICE – APPROPRIATE? * They must also have experienced at least ONE of the following in the last year: Serious lung or kidney infection Sepsis (sometimes called “blood poisoning”) Severe open bedsores or pressure ulcers Persistent fever, even after antibiotics Consistent inability to take food/fluids, or, lab test results that indicate profound nutritional impairment *NOTE: This diagnosis can only be provided by a physician SOURCE:

THE MEDICARE HOSPICE BENEFIT Covered under Medicare Part A Patient must sign a statement choosing hospice care instead of routine Medicare covered benefits for their terminal illness * The hospice must be a Medicare-certified hospice *Medicare will still pay for covered benefits for any health problems that are not related to the terminal illness SOURCES: medicare.gov, ucop.edu

THE MEDICARE HOSPICE BENEFIT Currently, the benefits run for two periods of 90 days followed by an unlimited number of 60 day periods. At the end of each period, the patient must have benefits renewed. To be “renewed,” a patient must still have the terminal illness and must manifest a functional decline. SOURCE: medicare.gov

THE MEDICARE HOSPICE BENEFIT – WHAT IS COVERED? Physician visits Nurse visits Medical equipment Medical supplies Drugs for symptom control or pain relief (patient may need to pay a small copayment) Hospice aide and homemaker services Physical and occupational therapy Speech-language pathology services SOURCE: medicare.gov

THE MEDICARE HOSPICE BENEFIT – WHAT IS COVERED? Social worker services Dietary counseling Grief counseling for the patient and family Short-term inpatient care (for pain and symptom management) Short-term respite care (may need to pay a small copayment) Any other Medicare-covered services needed to manage pain and other symptoms related to the patient’s terminal illness, as recommended by the hospice team SOURCE: medicare.gov

THE MEDICARE HOSPICE BENEFIT – WHAT IS NOT COVERED? Treatment intended to cure the patient’s terminal illness Prescription drugs intended to cure the terminal illness (rather than for symptom control or pain relief) Care from any hospice provider that wasn’t set up by the hospice medical team Room and board Care in an emergency room, inpatient facility care, or ambulance transportation, unless it’s either arranged by the hospice team or is unrelated to the patient’s terminal illness SOURCE: medicare.gov

HOSPICE CARE SHOULD BE AVAILABLE TO ANYONE WHO NEEDS IT!!! Hospice care is available to anyone who meets the admission qualifications regardless of the patient’s ability to pay. Most hospices* accept: Medicare Part A Private insurance Medicaid Patients without funding *non-profit hospices

THE HOSPICE TEAM Medical director Attending physician Social worker Registered nurses Home health aides Chaplain Volunteers Other modalities as needed (PT, OT, etc.)

THE HOSPICE TEAM – SOCIAL WORK ROLE Assess patient/family emotional, social, spiritual and financial needs and develop plan of care to meet identified needs Provide direct counseling and bereavement support to patients and their families The philosophies of social work and palliative care complement one another – each taking into account the dying individual in the full context of their life (Bosma et al., 2010) – quality of life should include quality of death (Roff, 2001).

THE HOSPICE TEAM – SOCIAL WORK ROLE Using the biopsychosocial perspective to assess patients, social workers view patients holistically, providing patients and families assistance with emotional reactions, therefore aiding them in later making difficult medical decisions (Snow et al., 2008).

FACILITATING MEANINGFUL AND ENJOYABLE VISITS WITH HOSPICE PATIENTS Activities visitors may enjoy doing with their loved one: Massaging hands or feet with lotion Brushing his or her hair Singing familiar songs Looking at a colorful book or pictures Saying favorite prayers or poems Introducing favorite smells: cinnamon, fresh grass, cologne, perfume, fresh baked cookies, and flowers Holding a cuddly pet like a cat or dog Holding hands and just being together Going outside to enjoy the air, the sunshine and the rest of nature SOURCE: Simon Kassabian, MD, FACP Director, Palliative Care and Deirdre Downes, LCSW Director Social Work, Jewish Home Lifecare

AS DEATH APPROACHES… THE PROCESS OF “ACTIVELY” DYING Loss of appetite and ability to swallow Decreased urine output Less responsive and sleeps most of the time. Increasing weakness Loss of ability to close eyes Pain may be evident Breathing changes – can fluctuate between slow and labored, quick and shallow Skin becomes cooler and blotchy in the feet and hands SOURCE: Simon Kassabian, MD, FACP Director, Palliative Care and Deirdre Downes, LCSW Director Social Work, Jewish Home Lifecare

AT THIS SPECIAL TIME… Provide the patient and family privacy, if possible. Place chairs near the bed for visitors. Put pictures, flowers, or religious objects on the bedside table. Place a sign on the door to indicate the significance of this time and to make known the need for privacy and quiet. Face the bed toward the window if it is not too bright. Reduce bright lights. If the weather is nice, open a window if possible. Spray the pillow or room with the person’s favorite scent. SOURCE: Simon Kassabian, MD, FACP Director, Palliative Care and Deirdre Downes, LCSW Director Social Work, Jewish Home Lifecare

AT THIS SPECIAL TIME… Remind visitors that the sense of hearing is often the last sense to go – encourage visitors to communicate with the patient and NOT to talk about them as if they were not present Don’t forget that staff members are family too and allow them special time to say goodbye Make sure staff know hospice protocols for when death occurs – they may be different from facility protocols

Thinking and talking about death need not be morbid; they may be quite the opposite. Ignorance and fear of death overshadow life, while knowing and accepting death erases this shadow. -Lily Pincus

LAPOST The mission of the Louisiana Physician Order for Scope of Treatment -- LaPOST -- is to improve end-of-life care in Louisiana by honoring the health care wishes and goals of care of those with life-limiting illnesses. “Our goal is to empower consumers and health care professionals with easy-to-access, simple-to-understand information and resources to make educated decisions about end-of-life care.” SOURCE:

LAPOST The LaPOST document and model of care were created to effectively communicate the wishes of seriously ill patients to have or to limit medical treatment as they move from one care setting to another (e.g., hospital to home/nursing home/assisted living/home health/hospice and vice versa). SOURCE:

LAPOST – QUICK FACTS Standardized document available to all physicians and patients in Louisiana Recommended for patients with a life-limiting illness and irreversible condition Voluntary and neither for nor against specific treatment Created to transfer with patients through health care settings SOURCE:

LAPOST – QUICK FACTS Requires the input of either the patient or the patient’s personal health care representative Must be completed and signed by a physician Becomes a binding medical order once completed Can be changed or revoked at any time by the patient or based on new knowledge by the patient’s personal health care representative SOURCE:

END-OF-LIFE DOCUMENTS End-of-life care preparation usually involves one or a combination of three documents: LaPOST Advance directive (also referred to as a living will) Health care power of attorney While similar, each document requires specific planning. SOURCE:

END OF LIFE DOCUMENTS LaPOST becomes effective if a patient is unable to communicate. It is standardized and available to all physicians and patients in Louisiana, increasing the likelihood that a patients’ treatment preferences will be fulfilled. SOURCE:

END OF LIFE DOCUMENTS An advance directive, also referred to as a living will, is a legal document stipulating treatment if an individual becomes terminally ill and incapable of making decisions. This document must be notarized. SOURCE:

END OF LIFE DOCUMENTS A health care power of attorney is a document that allows an individual to designate a proxy to oversee end-of-life treatment once a patient is incapable of making decisions. NOTE: If multiple end-of-life documents are completed, treatment preferences outlined in the most recent document are followed. SOURCE:

CURRENT TRENDS & ISSUES In 2009, 83% of hospice patients were adults over age 65. (National Hospice and Palliative Care Organization 2010). Approximately 84% of hospice care in the United States is funded by the Medicare Hospice Benefit, making it the primary insurer for hospice services (Remington & Wakim, 2010). In 2009, the median length of service for hospice patients was three weeks (NHPCO, 2010).

CURRENT TRENDS & ISSUES Today, there are about 5,000 hospices operating in the United States (NHPCO, 2010). There are 126 hospices in Louisiana ( Nonprofit versus for profit hospices

RESOURCES Social Work Hospice and Palliative Care Network - membership includes subscription to Journal of Social Work in End-of-Life and Palliative Care, newsletters, policy updates National Council of Hospice and Palliative Professionals (NCHPP) – professional membership associated with NHPCO - National Hospice and Palliative Care Organization

RESOURCES Louisiana-Mississippi Hospice and Palliative Care Organization Hospice Eligibility Medicare Hospice Benefit LaPOST -