Hospice & Palliative Concept

Community Health Nursing Department

ObjectivesDirect student will be able to Describe:End Of Life Care Quality Of Life IssuesConcept hospice careConcept palliative care

End Of Life CareLack of knowledge of healthcare professionalsAging of the populationRealities of life limiting DiseasesDelayed access to hospice and palliative careRules and Regulations

Impediments/halangan that impact the care provided to patients at end of life:

Lack of knowledge on the part of healthcare professionals has a significant impact on how well the patients and their families who are going through the dying process will have their physical, psychological, social and spiritual needs managed.Aging of the population refers to the fact that by the year 2030, there will be approximately 70 million individuals reaching the age of 65 or greater, more than double the number in 1997 (Administration on Aging, 2000). With this increased life expectancy, there will be a continued rise in the elderly having to cope with concurrent/berbarengan chronic illnesses and their associated physical, social and psychological difficulties.

End Of Life CareRealities of life limiting disease - refers to the failure to acknowledge/mengakui that the limits of medicine may lead to futile/gagal care. Use of aggressive curative treatments can prolong the dying process and contribute to physical and emotional distress of the patient. Delayed access to hospice and palliative care refers to the need for more timely referrals by healthcare professionals to these services in order for patients and their families to reap/memperoleh the full benefit of hospice and palliative care. Rules and regulations refers to issues regarding/mengenai access to care, insurance coverage and the potential need to hire/mgaji a caregiver from outside the family which can contribute to financial barriers to care.

Quality Of Life IssuesPhysical well-beingPsychological well-beingSocial well-beingSpiritual well-beingConcept of Suffering

Quality Of Life IssuesQuality of life differs from person to person. The patient is the only one who can define quality of life which is based on his or her own life experiences, values and beliefs. It is important to consider each of the dimensions described here from the patient and family perspective. Quality of life must be considered throughout/keseluruhan the illness and end of life period to include the time of death and bereavement period.

Quality Of Life IssuesPhysical well-being The physical well-being of the patient is affected by various symptoms due to organic and metabolic changes, disease progression and debilitation/kelemahan. Physical aspects include: functional ability, sleep, rest, and appetite. Pain is one of the primary concerns of terminally ill patients and their family members or caregivers. Family members can develop or may have existing physical needs that impact their ability to care for the patient, as well as their ability to care for themselves. Physical symptoms can manifest during the bereavement period as well.

Quality Of Life IssuesPsychological well-being Patients experience a wide range of emotions and psychological issues/concerns, and losses ( i.e., body image, role/relationship changes, etc) throughout their terminal illness journey and at the end of life. Communication and support are important components in the management of the psychological domain.

Quality Of Life IssuesSocial wellbeing - The social structure and integrity of the family may be threatened. Becoming a burden to ones family is often a concern to a patient. Expressions of sexuality may change between partners as illness progresses. Children may show their emotional concerns by isolating themselves or by acting out in school or at home. Financial concerns may arise due to loss of income. Friends and extended family stop visiting, creating social isolation for patient and family.

Quality Of Life IssuesSpiritual well being Religion gives expression to a persons beliefs, values, and practices and provides answers to questions regarding suffering, illness, pain and death. Skillful attention to maintaining a persons unique meaning of hope can enhance quality of life and help make the dying process more meaningful to the patient and family.

Quality Of Life IssuesConcept of Suffering - Suffering is a highly personal experience and depends on the significance or personal meaning of events and losses. It is a state of severe distress that threatens the intactness/keutuhan of the individual. Suffering may be associated with an event(s), fear of physical distress, issues regarding family relationships and other roles, perceptions of self,witnessing/mengalami anothers distress, an inappropriate focus on cure, etc.

Quality Of Life IssuesIt is imperative/penting sekali that healthcare respond to the psychological and spiritual needs of patients and families coping with life-threatening illnesses to avoid/menghindari increasing their suffering and isolation.

End of Life CareHospice Care Palliative Care

Definition of Hospice Care:hospes Latin for host or guestOrigins traced to early Middle ages as a way station for travelers between Europe, Africa, and the Middle East

HospiceHospice care is a compassionate/mhibur orang method of caring for terminally ill people. Hospice is a medically directed, interdisciplinary team-managed program of services that focuses on the patient/family as the unit of care. Hospice care is palliative rather than curative, with an emphasis on pain and symptom control, so that a person may live the last days of life fully, with dignity/bmartabat and comfort, at home or in a home-like setting.

- National Hospice and Palliative Care Organization

Hospice Hospice care is the support and care for persons in the final phases of an incurable disease so that they may live as fully and comfortably as possible (NHPCO, 2000). Hospice is appropriate when the natural course of an illness would result in a life expectancy of 6 months or less. Hospice also supports the surviving family through the dying and bereavement process (Egan & Labyak, 2001).

HospiceHospice provides comprehensive palliative, medical and supportive services across a variety of settings and is based on the understanding that dying is a part of the normal life cycle. Care can be provided in the home, in residential facilities, long-term care facilities and other settings (i.e., prisons).

Definition of Hospice Care:A reimbursement benefit for patients who have a limited prognosis or life expectancyPrimarily community-basedCare for severely ill patients and their familiesTeam of professionals and trained volunteersFocus is on care, not cure.Goals:Relief of pain and other symptomsPsycho-social support

Definition of Hospice Care:hospice care is a total patient care program with focus on the highest possible quality of life for the terminally ill patients coveringall their physical, psychological, social and spiritual needs. the care is also extended to bereavement perio of their families

Main concept of Hospice:

Respect/mhormati life and human rightsNothing can be done to cure, but a lot can be done to careRespect death is a natural process; therefore, not hasten/cepat nor postpone/nunda deathAssist person die in peace and with dignityConcern quality of life instead/dari pada of quantity

History of Hospice: Middle ages:Hospice rooted in religious institutions which provided hospitalization for the sick, dying and grieving persons (The words hospital, hostel, and hospice were used interchangeably)

Late 18th: Sister Mary Aikenhead of the Irish Sisters of Charit opened Our Ladys Hospice in Dublin for the care of the dying

1900s: English Sister of Charity - St. Josephs Hospice

1967: Dr. Cicely Saunders - St. Christophers Hospice in London (since then, hospice is more than a place, a philosophy an a movement)

Social factors for the development of hospice care

a. Prolongation of dying process:high medical technology and increased age among the population.high incidence of mortality by chronic and degenerative diseaseDying to death trajectory/jalan is usually long more terminally ill patients in the society. Some of the countries allow the use of active euthanasia while the hospice concept is the third chose in facing terminal disease.

b. bureaucratization

Modern dying takes place in big health care institutions where:focus curing, death is a failure in modern medicinestaff lack of skill towards palliative care doctors decision dominatingrules lack of concern of human needsenvironment is busy

The dying patients were often forced to spend their last days lying in sterile hospital beds, full of tubes, very often sedated and separated from families. They received very little attention from the care professionals. Dr. Cecily Saunders

c. Secularization

materialistic world, too busy to think about meaning of life and death

less religious faith

improvement of standard of living, openness to the worldwide trend and educational level among the population

Hospice Care Provides:Patient control over decisions about care Family involvement Specialized servicesPharmaceuticals and home supplies/equipmentReliogion supportGrief counselingVolunteer support Option for patient to die at home

Hospice Service Deliverya. Modes of hospice service delivery-Independent Hospice-Hospital Based Hospice-Consultative Team-Home Care-Day Care

Hospice Service Deliveryb. Doctor / nurseEnsure consistency of careIncrease trust and rapportIncrease understanding

Hospice Service DeliveryLevels of CareRoutine Home CareBasic services provided in the patients primary place of residence, including LTCFContinuous Home CareGeneral In-patient CareRespite In-patient Care

Hospice Service DeliveryCovered ServicesInterdisciplinary Team care:Nursing servicesMedical social servicesReligion counselingMedical direction and physician care plan oversightHome health aide and homemaking/caregiver services Bereavement servicesDietary counseling

Hospice Service DeliveryCovered ServicesMedical consulting servicesPhysical therapy, occupational therapy, speech therapyDrugs and biologicalsDurable Medical EquipmentMedical suppliesLaboratory and diagnostic studies

Hospice Service DeliveryContinuous Care8-24 hours of care per day provided in the home settingPaid hourly More than 50%of care has to be provided by a nurseHours do not need to be continuousClinical indications similar to general inpatient care

Hospice Service DeliveryGeneral Inpatient CareCare that cannot be managed in the home settingPer Diem/kunjungan rateMay be provided in a variety of venues/tempat perawatanFree-standingLeased/sewa space in a hospital, LTCFContract bed in hospital or LTCFReimbursement limited to no more than 20% of a hospice programs billable days of care

Hospice Service DeliveryIndications for General Inpatient Care and Continuous CareUncontrolled painRespiratory distressSevere decubitus ulcers or other skin lesionsIntractable nausea, emesisOther physical symptoms not controllable on a routine level of careSevere Psychosocial Symptoms or acute breakdown in family dynamics

Hospice Service DeliveryRespite Inpatient CareCare provided to give the family care-givers respite from the rigors/ketidaktahuan of taking care of the patientPer Diem rateLimited to a maximum of 5 days at any one timeUnder-utilized due to poor reimbursement rate compared to other levels of care

A shift from hospice care shift to palliative care?

Difficult to speculate/mnebak the life span/massaHospice philosophy is a concept applicable to other settings instead/malahan of restricted to a building, and its knowledge is not only applicable to terminal stageThere are myths of Hospice Care = patient cannot be discharged= hospice care is not available in general hospital= not a modern health care center with scientific base

Definition Palliative Care:

Palliative carepalliare latin: to cloak (menyelubungi/jubah panjang melindungi)care provided to treat the symptoms of an illness without curing or affecting the underlying illnessExamples insulin palliates diabeteslasix palliates congestive heart failure

Palliative care definition 1Palliative care seeks/mcoba to prevent, relieve, reduce or soothe/ringankan the symptoms of disease or disorder without effecting a cure Palliative care in this broad sense/pengertian is not restricted to those who are dying or those enrolled in hospice programs It attends closely to the emotional, spiritual, and practical needs and goals of patients and those close to them.Institute of Medicine 1998

Palliative Care: definition 2The active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems, is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with anticancer treatment. (W.H.O.)

Palliative care expanded definitionAffirms/memperkokoh life, regards/hormati dying as a normal processNeither hastens nor postpones deathProvides relief from pain, other symptomsIntegrates psychological and spiritual careInterdisciplinary team Support system for the family WHO 1990

Definition Palliative Care:Palliative CareExtends principles of hospice care to a broader populationEarlier in disease course than hospice Comprehensive and specializedPain and symptom management, advance care planning, psychosocial and spiritual support, coordination of careDefinition may be able to be expanded to all aspects of medical care

Potential Goals of CareCure of diseaseAvoidance/hindari of premature deathMaintenance or improvement in functionProlong lifeRelief of sufferingQuality of lifeStaying in controlA good deathSupport for families and loved ones

Comparison of Hospice and Palliative Care Programs

CharacteristicHospicePalliative CareEligibilityPrognosis < 6 monthsNone required Determined by programProfessional ServicesInterdisciplinary team: Physician Nurse Social Worker Pastoral counselor Certified nursing assistants Others as needInter or multidisciplinary team: Physician NurseSocial Worker Others as neededLocation of servicesLocation of servicesComprehensive Home care LTCF InpatientBased on program Some Comprehensive Some inpatient only Some LTCF based Some require networking between hospital and hospice or home based home-health programs FundingFunding Medicare Hospice Benefit State Medicaid programs HMOs and commercial insurers Charity (not for profit hospices) Traditional hospital coverage Traditional home care coverage Support from hospitals and hospice partner organizations Grants Charity

Palliative Care ProgramsHospital Based Palliative CareReimbursement through traditional systemNo specific reimbursement stream/arah for palliative carePhysician consultsDRGs for hospital careSavings by reducing ICU and inpatient daysImproved quality of inpatient careMay partner with a hospice to provide more comprehensive services

Palliative Care ProgramsLong-term Care Facility Palliative CareNeed for palliative care for patients accessing Medicare Part A for Nursing Home carePhysician Consult servicesPartnerships with hospices

Palliative Care ProgramsHome-Based Palliative CareHome health agency servicesMay be independent or affiliated with a hospice programPatients need to be Home-care eligiblePre-hospice Bridge programsAffiliated with hospiceReimbursed as Home Health agenciesHospice or hospice trained staff

Palliative Care ProgramsHome-Based Palliative CarePre-hospice Bridge programsAffiliated with hospice and reimbursed as HHAHospice or hospice trained staffSupplementary funding for non-covered servicesLonger median survival (52 vs. 20 days)Patients living > 6 months Patients were hospice eligibleMay have desired treatment hospice was unwilling/enggan to provideNo data on why patients did not elect hospice

Palliative Care ProgramsDisease-Based Palliative CareFocused on special needs of patients with specific chronic and potentially terminal illnessesCancerHIVPediatricsDementia

Symptoms-Based Palliative Care

CancerOther

Pain84%67%Trouble breathing47%49%Nausea and vomiting51%27%Sleeplessness51%36%Confusion33%38%Depression38%36%Loss of appetite71%38%Constipation47%32%Bedsores28%14%Incontinence37%33%

Seale and Cartwright, 1994

Hospice/Palliative Care InterfaceTraditional Model of Health CareFrom Emanuel, von Gunten, Ferris. Plenary 3:EPEC series and reproduced in Kinzbrunner. Palliative Care Perspectives, Chapter 1 in Kuebler, Davis, Moore Palliative Practices, An Interdisciplinary Approach, 2005, p. 21.

Hospice/Palliative Care InterfaceIntegrated Palliative Care ModelModified From Emanuel, von Gunten, Ferris. Plenary 3:EPEC series and reproduced in Kinzbrunner. Palliative Care Perspectives, Chapter 1 in Kuebler, Davis, Moore Palliative Practices, An Interdisciplinary Approach, 2005, p. 22.

Hospice/Palliative Care InterfaceIntegrating Palliative Care and HospiceModified From Emanuel, von Gunten, Ferris. Plenary 3:EPEC series and reproduced in Kinzbrunner. Palliative Care Perspectives, Chapter 1 in Kuebler, Davis, Moore Palliative Practices, An Interdisciplinary Approach, 2005, p. 22.