Presentation on theme: "Palliative Care Continuum"— Presentation transcript:
1 Palliative Care Continuum Carri Siedlik - APRN, ACHPNNurse PractitionerAdvanced Certified Hospice and Palliative NursePalliative Care ProgramThe Nebraska Medical Center
2 Death and Dying in America Unprecedented number of older Americans with chronic illnessTechnology is prolonging life but not restoring itExploding healthcare costsMany uninsuredLack of control over rising drug/device costsFailure to treat pain and other symptomsMeier, 2010
3 View of Advanced Illness and the Care that is Involved Frequent emergency room visitsIncrease of in-patient admissionsFutile carePromote sufferingIncrease risk of depression and anxietyPromote complicated bereavement for family members/caregiversTreatments continued near death may prevent/delay hospice servicesMany patients with advanced cancer receive a wide-variety of chemotherapy regimens. Many with non-cancer diagnoses receive numerous treatments, prescribed for multiple medications, and provided with opportunities for technological assistance (i.e. pacemakers, ventricular access devices, dialysis, etc).Due to the numerous side effects, these patients are frequently seen in emergency rooms and many times, admitted to the ICU or oncology units.At what point do you ask, “Are these interventions prolonging this patient’s life?”“Are these interventions futile?” “Are they promoting suffering for the patient and their loved ones?”“Are they increasing the risk of depression and anxiety?”“Are they promoting complicated bereavement for the family members/caregivers?”“If we continue with chemotherapy (or other life-sustaining treatments), does this prevent/delay hospice services? (Greer et al., 2012)In a study published in 2012, Greer and colleagues looked at the promotion of early palliative care and how that affected the timing of final chemotherapy administration for patients with metastatic non-small-cell lung cancer (NSCLC). In this study, the data showed those who received early palliative care had fewer odds of receiving chemotherapy 60 days before death and had higher hospice enrollment. (Greer et al., 2012)Greer et al., 2012
4 What Constitutes Good Quality Care At the End of Life? For Healthcare Team: Providing symptom management and discussing emotional aspects of the disease.For Patients: Achieving a sense of control, attaining spiritual peace, succeeding in having finances in order, strengthening relationshipswith loved ones, believing their lifehad meaning.In a recent study of patients with non-small-cell lung cancer (NSCLC), out patient palliative care consult teams found that symptom management was foremost in the conversations. Patients also were open to discuss emotional aspects of their disease (Jacobsen et al., 2011).It has also been noted that patients want to achieve a sense of control for as long as they can, attain spiritual peace, succeed in having their finances in order, strengthen relationships with their loved ones, and believe that their life has had meaning (Grant & Dy, 2012).In another study with metastatic non-small-cell lung cancer (NSCLC) patients, the data clearly showed that those patients who were randomized to receive early palliative care had:Better quality of life than those with standard careDecreased symptoms regarding depressionMedian survival rate was long (11.6 months with early palliative care versus 8.9 months with no palliative care)(Temel et al., 2010)Grant & Dy, 2012; Jacobsen et al., 2011
5 Cause of Death Demographic and Social Trends Early 1900sCurrentMedicine's FocusComfortCureCause of DeathInfectious DiseasesCommunicable DiseasesChronic IllnessesDeath rate1720 per 100,000(1900)800.8 per 100, 000(2004)Average LifeExpectancy5077.8Site of DeathHomeInstitutionsCaregiverFamilyStrangers/Health Care ProvidersDisease/DyingTrajectoryRelatively ShortProlongedAdministration on Aging, 2010; Kochanek et al., 2011; Minino, et al, 2009
7 Illness/Dying Trajectories Steady Decline, Short Terminal Phase Health StatusDeathTimeField & Cassel, 1997
8 Illness/Dying Trajectories Slow Decline, Periodic Crises, Death Health StatusCrisesDeathTimeField & Cassel, 1997
9 Toll of Death and Dying on Patients & Families/Caregivers Patients fear they will be a physical and financial burdenIf “nothing more can be done,” will healthcare providers abandon them?How do families and caregivers adjust to role changes?Many drain life savings and/or go bankrupt to cover medical costsOlder adults may be cared for by an aged spouse who is also illOlder children caring for a parent may also have acute or chronic illness(es)The toll of caring for a loved one with a life-threatening illness can be devastating for not only the patient, but for the families and caregivers.They fear that they will be a physical and financial burden to their families.Patients and families worry that when "nothing more can be done", their health care providers will abandon them.Families may be uncertain about how to provide physical care and adjust to role changes (Egan-City & Labyak, 2010). Most adults prefer to be cared for at home, if terminally ill. Today, less than 1 in 4 deaths occur at home (Grant & Dy, 2012).Many families drain life savings in order to cover costs of care for terminally ill family members (Boni-Saenz et al., 2005).Older adult patients are often primarily cared for by their aged spouses who may have numerous chronic illnesses themselves.Older children, with chronic or acute illness may be caring for their aged parents (e.g. 70 year-old daughter who is going through chemotherapy for colon cancer is caring for her 91 year-old father with dementia and heart disease).Cultural Comment:There are many components within culture that may also lead to fears and concerns about dying- ethnicity, race, gender, age, religion/spirituality, sexual orientation, differing abilities, financial status, place of residency, employment, education level and actual cause of death.Egan-City & Labayak, 2010; Given et al., 2012
10 Overview of Caregivers: Their Commitment and The Cost Over 44 million adults provide unpaid care to sick/disabled adultsAverage of 21 hours a week~ 33% are elderlyMost are women in their mid 40’s, working full-time40% of women and 26% of men caregivers report emotional strainCost of uncompensated care = $257 B/yearOver 44 million adults, representing 21% of the adult population, provide so type of unpaid care to sick/disabled adults.These caregivers spend an average of 21 hours/week providing care. They are the largest source of long-term-care service provider in the United States.One-third of the caregivers are elderly.Approximately 60% of caregivers are women and assist with labor-intensive activities such as bathing, dressing, toileting, transporting patients who are dependent. The average caregiver is a woman, in her 40’s, who works full-time and spends at least 20 hours a week with her ailing mother.Emotional strain is evident, as 40% of women and 26% of men report this. This is a major predictor of morbidity/mortality.If you estimated the hourly rate of a caregiver at $8/hour, this uncompensated care would be $257 B/year—more than 75% ($336 B) of the total dollars spent on Medicare in 2005.Meier, 2010Meier, 2010
11 Remember Patients Who Are Veterans: 96% of all Veterans Die in Non-VA Facilities US Veterans: 23,442,000900 WW II Veterans die a dayVeteran deaths account for almost 28% of all US deathsNearly 40% of enrolled Veterans live in rural communities121,000 Veterans are without shelter or healthcare, hence no access to hospice or palliative careCasarett 2008, NHPCO, 2011Only 4% of Veterans die in Veteran Affairs (VA) facilities. Who cares for the other 96%?Non-VA facilities (i.e. acute care facilities, hospices, homecare agencies, nursing homes, long-term care facilities, etc) care for the remainder of Veterans who seek healthcare.There are over 23,442,000 US Veterans living today.900 World War II Veterans die each day in the US. (Casarett, 2008)Veterans deaths account for almost 28% of all US deaths. (NHPCO, 2010)Nearly 40% of enrolled Veterans live in rural communities and this prevents many from driving to large cities, where most Veteran Affairs Medical Centers (VAMC) are located. Hospices around the US have partnered with VAMC’s and other VA facilities to provide care for these Veterans. (NHPCO, 2010). This initiative is called We Honor Veterans. For more information about this campaign, go toSpecial attention must be paid to those Veterans who are without shelter and do not seek healthcare. If they are not in “the system” of receiving healthcare, then they will not be able to access hospice/palliative care services. Nurses can orchestrate care in a variety of clinical and non-clinical settings. For more information about Veterans and homelessness go to:For more information about health issues of concern for Veterans go to:LAUREN, here are the references:Casarett, D., Pickard, A., Bailey, F.A., Ritchie, C., Furman, C., Rosenfeld K., et al. (2008b). Important aspects of end-of-life care among veterans: Implications for measurement and quality improvement. Journal of Pain and Symptom Management, 35(2),National Hospice and Palliative Care Organization (NHPCO). (2010b). Reaching out: quality hospice and palliative care for rural and homeless veterans. Alexandria, VA: Author Retrieved February 13, 2012 from:
12 Changes Must Be Made: Development of Standards to Guide Practice National Consensus Project (NCP) for Quality Palliative Care: Promotes evidence-based practices to optimize palliative care programsNational Quality Forum: Developed quantifiable quality indicatorsThe Joint Commission: Advanced Certification in Palliative CareThe NCP Guidelines for Quality Palliative Care, is a document that promotes optimal palliative care, by standardizing the care with the goal of improving palliative care throughout the US.The National Quality Forum, a leader in promoting quality healthcare, adopted the NCP Guidelines and produced a document entitled: A Framework for Palliative and Hospice Care Quality Measurement and Reporting.Launched in September 2011, The Joint Commission’s Advanced Certification Program for Palliative Care recognizes hospital inpatient programs that demonstrate exceptional patient and family-centered care and optimize the quality of life for patients (both adult and pediatric) with serious illness.
13 NCP and NQF: 8 Domains of Palliative Care Structure and processes of carePhysical aspects of carePsychosocial/psychiatric aspects of careSocial aspects of careCultural aspects of careSpiritual, religious, and existential aspects of careCare of the imminently dying patientEthical and legal aspects of careNCP, 2013
14 Report to Congress: National Strategy For Quality Improvement in Healthcare Palliative care compliments national aim to improve quality of care at the local/state/national levelBetter Care: Must be patient-centered, reliable, accessible, safeAffordable Care: Reduce cost for individuals, families, employers, governmentThe US Department of Health and Human Services (DHHS) submitted this report to Congress in March 2011.Could palliative care be the answer to soaring healthcare costs?With all the healthcare changes coming through the Affordable Care Act, an emphasis is on providing better and more affordable care.Palliative care, which is centered on the physical, psychological, social and spiritual needs of patients has been shown to be reliable, accessible, and safe.Palliative care has also decreased the cost of healthcare for those with life-limiting illness and has prevented futile treatments, prolonged intensive care/hospital stays.
15 Barriers to Quality Care at the End of Life Failure to acknowledge the limits of medicineLack of training for healthcare providersHospice/palliative care services are poorly understoodRules and regulationsDenial of deathMeir, 2010; NHPCO, 2011
16 What is Hospice? Definition History Services included Statistics Hospice is a service delivery system that delivers palliative care to those who have a limited life expectancy.Dame Cicely Saunders 1960’s St Christopher’s Hospice in London
17 What is Palliative Care? DefinitionHistoryPhilosophy of care and an organized highly structural system for delivering careRelief of sufferingBest quality of lifeRendered along with life prolonging treatment
18 Current Practice of Hospice and Palliative Care Curative TreatmentPalliative CareHospice
19 Continuum of Care Disease-Modifying Treatment Hospice Care DeathDisease-Modifying TreatmentHospice CarePalliative CareBereavement SupportDelineated the continuum for palliative and hospice care as the disease progresses and the patient enters into the terminal phase of illness.Terminal Phase of Illness
20 Hospice Medicare Benefit Eligibility Criteria: The patient’s doctor and the hospice medical director use their best clinical judgment to certify that the patient is terminally ill with life expectancy of six months or less, if the disease runs its normal courseThe patient chooses to receive hospice care rather than curative treatments for his/her illnessThe patient enrolls in a Medicare-approved hospice programPatients may elect to sign off of the MHB and return to Medicare Part A and re-enroll in hospice at a later time
21 Payment for Hospice and Palliative Care MedicareMedicaidMost private health insurersPalliative Care:PhilanthropyFee-for-serviceDirect hospital supportHospice: Under the Medicare Hospice Benefit (MHB), a patient signs off their Medicare Part A (hospital payment), once they choose to receive hospice care rather than curative treatments, and enrolls in the MHB with direct care provided by a Medicare certified hospice agency. Similar hospice benefits are offered by Medicaid and most private health insurers.Palliative Care: Palliative care services in the United States are paid by philanthropy, fee-for service, or from direct hospital support. Practitioners working in palliative care may bill Medicare, as well as other payers for their care, but reimbursement is low, since most services are nonprocedural. This has resulted in a recent growth in hospital palliative care services being reimbursed through hospital operating budgets. Hospitals will absorb these palliative care costs because in the long run, they save money by delivering this care to their sickest and most vulnerable patients. This prevents these patients from extended hospital and ICU stays and interventions that may be futile (Meier, 2010).
22 Stop and ConsiderWhich of the following patients could benefit from palliative care?A. 64 year-old with congestive heart failure, hypertension and diabetesB. 32 year-old with acute myelogenous leukemiaC. 57-year-old with newly diagnosed amyotrophic lateral sclerosisD. 76 year-old with Parkinson’s disease
23 Let’s Practice: A Case Study 70 y/o woman with newly diagnosed pancreatic cancer.Live alone. Retired school teacher.Only Son lives in another stateWould this patient benefit from palliative care?What services would this patient most likely need now? Support, decision making, pain and symptoms, psychological, spiritual, social needs.If this patient were at your hospital how would these services be paid for?Could this patient qualify for Hospice benefits?
24 Quality-of-Life Model PhysicalFunctional AbilityStrength/FatigueSleep & RestNauseaAppetiteConstipationPainPsychologicalAnxietyDepressionEnjoyment/LeisurePain DistressHappinessFearCognition/AttentionQuality of LifeSocialFinancial BurdenCaregiver BurdenRoles and RelationshipsAffection/Sexual FunctionAppearanceSpiritualHopeSufferingMeaning of PainReligiosityTranscendenceQOL at end of life means addressing multiple dimensions of care, Gabriel, 2008)
25 Maintaining Hope in the Midst of Death Experiential processesSpiritual processesRelational processesRational thought processesRemember the caregiverErsek & Cotter, 2010Nurses have a unique opportunity to maintain patients’ and families’ hope by providing excellent physical, psychosocial, and spiritual palliative careReminiscingReferrals
26 Tools and Resources for Palliative Care Assessment ToolsPhysical symptomsEmotional symptomsSpiritualityQuality of lifeCaregivers outcomes
27 Prognostication Consists of 2 parts: – foreseeing (estimating prognosis)– foretelling (discussing prognosis)Performance statusKarnofsky – ECOG poor predictors, multiple symptoms, biological markers (e.g. albumin)“Would I be surprised if this patient died in the next 6 months?”Hui, 2012
28 Stop and Consider: Prognostication Kay, a 68-year-old woman with heart failureDyspnea at restOn ACE inhibitors and beta blockersEjection fraction (EF) < 20%SyncopeResistant ventricular or supraventricular arrhythmiasWould she qualify for hospice care, given these symptoms?The majority of patients who enter hospice are those with cancer. Yet, more people in the United States die of heart disease than of all cancers combined. For example, in 2009, 40.1% of hospice patients in the US died of cancer. This compares to 11.5% of those who died of heart disease. (Ref: Shega, J.W. & Levine, S.K. (2012). Caring for Patients with Chronic Illnesses: Dementia, COPD, and CHF. 4th edition. AAHPM: Glenview, IL, p. 80)Would Kay qualify for hospice care, given these symptoms? MAYBE!Here lies the problem with prognostication and determining the “6-months-or-less hospice rule.”With these symptoms, current guidelines/literature indicate that predicting a 6- or 12-month prognosis would only promote a 50% accuracy rate (Shega & Levine, 2012).So how does one make a clinical judgment about a patient like Kay?#1: What are Kay’s goals of care?#2: What is Kay’s New York Heart Association (NYHA) Functional Classification? This provides a way of classifying the extent of heart failure. For more information on NYHA Functional Classification, go to#3: Is Kay’s quality of life more important to her than aggressively pursuing a transplant? Ventricular assist device (VAD) therapy?#4: If Kay has NYHA class III or IV heart failure, and she requests no further hospitalizations, no consideration of transplant or VAD therapy, then she would be a candidate to discuss hospice with.All of these issues must be discussed with the patient and her family. An advance directive must be in place.Shega & Levine, 2012
29 Role of the Nurse in Improving Palliative Care Some things cannot be “fixed”Use of therapeutic presenceMaintaining a realistic perspectivePresence is a way of expressing compassionate caringQOL is personal, there is no right way to die, be flexible
30 Extending Palliative Care Across Settings Nurses as the constantExpanding the concept of healingBecoming educated (Certification, HPNA)Nurses spend more time than any otherEarly identification of palliative care needs allows patients and families to set and achieve goalsHealing: At the end of life nursing care shifts from a focus of wellness/recovery to an understanding of healing (Coyle, 2010)HPNA helps expand nursing edu on issues. Certification is available for LPN, RN, APRN, Nurse administrator.
31 Final Thoughts…..Quality palliative care addresses quality-of-life concernsIncreased nursing knowledge is essential“Being with”Importance of interdisciplinary approach to careSince Nurses cannot practice what they do not know, increased knowledge is essential to improved patient care through nursing edu and professional developmentNot only “doing For” but “being with”
32 “… touching the dying, the poor, the lonely, and the unwanted according to the grace we have received, and let us not be ashamed or slow to do the humble work.”-Mother Teresa