Palliative Care Continuum Carri Siedlik - APRN, ACHPN Nurse Practitioner Advanced Certified Hospice and Palliative Nurse Palliative Care Program The Nebraska Medical Center

Death and Dying in America Unprecedented number of older Americans with chronic illness Technology is prolonging life but not restoring it Exploding healthcare costs Many uninsured Lack of control over rising drug/device costs Failure to treat pain and other symptoms Meier, 2010

View of Advanced Illness and the Care that is Involved Frequent emergency room visits Increase of in-patient admissions Futile care Promote suffering Increase risk of depression and anxiety Promote complicated bereavement for family members/caregivers Treatments continued near death may prevent/delay hospice services Many 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

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 relationships with loved ones, believing their life had 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 care Decreased symptoms regarding depression Median 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

Cause of Death Demographic and Social Trends Early 1900s Current Medicine's Focus Comfort Cure Cause of Death Infectious Diseases Communicable Diseases Chronic Illnesses Death rate 1720 per 100,000 (1900) 800.8 per 100, 000 (2004) Average Life Expectancy 50 77.8 Site of Death Home Institutions Caregiver Family Strangers/ Health Care Providers Disease/Dying Trajectory Relatively Short Prolonged Administration on Aging, 2010; Kochanek et al., 2011; Minino, et al, 2009

Illness/Dying Trajectories Sudden Death, Unexpected Cause < 10% (MI, accident, etc.) Health Status Death Time Field & Cassel, 1997

Illness/Dying Trajectories Steady Decline, Short Terminal Phase Health Status Death Time Field & Cassel, 1997

Illness/Dying Trajectories Slow Decline, Periodic Crises, Death Health Status Crises Death Time Field & Cassel, 1997

Toll of Death and Dying on Patients & Families/Caregivers Patients fear they will be a physical and financial burden If “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 costs Older adults may be cared for by an aged spouse who is also ill Older 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

Overview of Caregivers: Their Commitment and The Cost Over 44 million adults provide unpaid care to sick/disabled adults Average of 21 hours a week ~ 33% are elderly Most are women in their mid 40’s, working full-time 40% of women and 26% of men caregivers report emotional strain Cost of uncompensated care = $257 B/year Over 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, 2010 Meier, 2010

Remember Patients Who Are Veterans: 96% of all Veterans Die in Non-VA Facilities US Veterans: 23,442,000 900 WW II Veterans die a day Veteran deaths account for almost 28% of all US deaths Nearly 40% of enrolled Veterans live in rural communities 121,000 Veterans are without shelter or healthcare, hence no access to hospice or palliative care Casarett 2008, NHPCO, 2011 Only 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 to http://www.wehonorveterans.org/ Special 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: www.va.gov/homeless/ For more information about health issues of concern for Veterans go to: www.va.gov/oaa/pocketcard/issues.asp   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), 115-125. 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: http://www.nhpco.org/files/public/veterans/Exec_Summary_Reaching_Out_Base_Year.pdf

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 programs National Quality Forum: Developed quantifiable quality indicators The Joint Commission: Advanced Certification in Palliative Care The 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. http://www.nationalconsensusproject.org/Guidelines_Download2.aspx 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. http://www.qualityforum.org/Projects/n-r/Palliative_and_Hospice_Care_Framework/Palliative___Hospice_Care__Framework_and_Practices.aspx 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. http://www.jointcommission.org/certification/palliative_care.aspx

NCP and NQF: 8 Domains of Palliative Care Structure and processes of care Physical aspects of care Psychosocial/psychiatric aspects of care Social aspects of care Cultural aspects of care Spiritual, religious, and existential aspects of care Care of the imminently dying patient Ethical and legal aspects of care NCP, 2013

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 level Better Care: Must be patient-centered, reliable, accessible, safe Affordable Care: Reduce cost for individuals, families, employers, government http://www.healthcare.gov/news/reports/quality03212011a.html The 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.

Barriers to Quality Care at the End of Life Failure to acknowledge the limits of medicine Lack of training for healthcare providers Hospice/palliative care services are poorly understood Rules and regulations Denial of death Meir, 2010; NHPCO, 2011

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

What is Palliative Care? Definition History Philosophy of care and an organized highly structural system for delivering care Relief of suffering Best quality of life Rendered along with life prolonging treatment

Current Practice of Hospice and Palliative Care Curative Treatment Palliative Care Hospice

Continuum of Care Disease-Modifying Treatment Hospice Care Death Disease-Modifying Treatment Hospice Care Palliative Care Bereavement Support Delineated 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

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 course The patient chooses to receive hospice care rather than curative treatments for his/her illness The patient enrolls in a Medicare-approved hospice program Patients may elect to sign off of the MHB and return to Medicare Part A and re-enroll in hospice at a later time http://www.nhpco.org

Payment for Hospice and Palliative Care Medicare Medicaid Most private health insurers Palliative Care: Philanthropy Fee-for-service Direct hospital support Hospice: 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).

Stop and Consider Which of the following patients could benefit from palliative care? A. 64 year-old with congestive heart failure, hypertension and diabetes B. 32 year-old with acute myelogenous leukemia C. 57-year-old with newly diagnosed amyotrophic lateral sclerosis D. 76 year-old with Parkinson’s disease

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 state Would 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?

Quality-of-Life Model Physical Functional Ability Strength/Fatigue Sleep & Rest Nausea Appetite Constipation Pain Psychological Anxiety Depression Enjoyment/Leisure Pain Distress Happiness Fear Cognition/Attention Quality of Life Social Financial Burden Caregiver Burden Roles and Relationships Affection/Sexual Function Appearance Spiritual Hope Suffering Meaning of Pain Religiosity Transcendence QOL at end of life means addressing multiple dimensions of care, Gabriel, 2008) http://prc.coh.org

Maintaining Hope in the Midst of Death Experiential processes Spiritual processes Relational processes Rational thought processes Remember the caregiver Ersek & Cotter, 2010 Nurses have a unique opportunity to maintain patients’ and families’ hope by providing excellent physical, psychosocial, and spiritual palliative care Reminiscing Referrals

Tools and Resources for Palliative Care Assessment Tools Physical symptoms Emotional symptoms Spirituality Quality of life Caregivers outcomes http://prc.coh.org

Prognostication Consists of 2 parts: – foreseeing (estimating prognosis) – foretelling (discussing prognosis) Performance status Karnofsky – 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

Stop and Consider: Prognostication Kay, a 68-year-old woman with heart failure Dyspnea at rest On ACE inhibitors and beta blockers Ejection fraction (EF) < 20% Syncope Resistant ventricular or supraventricular arrhythmias Would 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 http://my.americanheart.org/professional/StatementsGuidelines/ByPublicationDate/PreviousYears/Classification-of-Functional-Capacity-and-Objective-Assessment_UCM_423811_Article.jsp #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

Role of the Nurse in Improving Palliative Care Some things cannot be “fixed” Use of therapeutic presence Maintaining a realistic perspective Presence is a way of expressing compassionate caring QOL is personal, there is no right way to die, be flexible

Extending Palliative Care Across Settings Nurses as the constant Expanding the concept of healing Becoming educated (Certification, HPNA) Nurses spend more time than any other Early identification of palliative care needs allows patients and families to set and achieve goals Healing: 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.

Final Thoughts….. Quality palliative care addresses quality-of-life concerns Increased nursing knowledge is essential “Being with” Importance of interdisciplinary approach to care Since Nurses cannot practice what they do not know, increased knowledge is essential to improved patient care through nursing edu and professional development Not only “doing For” but “being with”

“… 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

To Comfort Always