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Palliative Care

Transcript: Early referral to palliative care also leads to appropriate referrals to hospice care and reduces the use of futile or unnecessary intensive care costs. Palliative care provides for all facets of suffering or discomfort that a patient may experience. Websites to obtain more information The prison hospice movement mostly came from the fact that the courts have ruled that inmates have the right to quality health care. It is the responsibility of the supervising government (Federal or State) to provide quality health care to the inmates under their care. Prison health care must meet the minimum standards of community health care. Since hospice is a standard of health care, it is only right to give quality hospice care to inmates. www.getpalliativecare.org www.palliativedoctors.org www.nhprco.org/resources/pediatrichospice-and-palliative-care www.caringinfo.org www.totallegal.com/livingwill.asp In 2003, more than 53,000 children died in the United States. Enhanced education to caregivers makes them feel more capable to care for pediatric patients with end of life issues. Discontinuing life sustaining treatment is not a requirement for palliative care. The program focuses on disease education, options for treatment, prognosis ,and advanced care planning . The focus of care is to provide appropriate physical, psychosocial, and spiritual support to the children, and the families of children, facing life threatening conditions. Plan of Action Palliative care uses the combined expertise of physicians, nurses, pharmacists, social workers, and chaplains to provide patients, and their families, with the supportive care they need to improve the quality of life when facing a life-limiting disease. Patient barriers Start at local level in each of our own communities to educate patients and families about the benefits of palliative care by attending health fairs and speaking to local community groups. Educate healthcare providers so they know when to offer palliative care to their patients. Connect with other Walden University students and faculty to provide information on palliative care as well as suggest ways they can become involved in social change in their communities. Establish a website for access to information and fund-raising events. End of life care spending amounts to 10-12% of all healthcare spending in the United States. Medicare is the payer for many, and 25-30% of all Medicare spending is on end of life care. Restrictions in the Medicare Benefit enacted in 1982 limit the expansion of palliative care. Medicare denies any claims for treatments that could be considered "curative" under the hospice benefit. As technology has changed, not everyone agrees about what is considered curative, versus treatment to improve the quality of life in chronic disease. "The centers for Medicare & Medicaid Services estimated that approximately 80% of the healthcare budget was spent during the patient's final month and covered costly resuscitation efforts and aggressive treatments." Inpatient expenditures for Medicare patients increased by 60% in 1999, and one quarter of those patients died. During that same year, 50% of feeding tube placements, 60% of intubations, and 75% of CPR recipients that were Medicare patients also did not survive. Purpose Pediatric Patients Bernato, A . E., McClellan, M.B., Kagay, C.R., & Garber, A.M. (2004). Trends in inpatient treatment intensity among Medicare beneficiaries at the end of life. Health Services Research, 39(2), 363-376. Friedman, B. T. Harwood, M. K., and Shields, M. (2002). Barriers and enablers to hospice referrals: An expert overview. Journal of palliative Medicine (5)1, 73-84. Hoffman, R. (2005). The evolution of hospice in America. Nursing's role in the movement. Journal of Gerontological Nursing 31 (7), 26-35. Jennings, B., & Morrissey, M. B. (2011) . Healthcare costs in end -of-life and palliative care: The quest for ethical reform. Journal of Social Work in End-of-life Care, 7 (4), 300-317. McGrath, L., Foote, D. G. , Frith, K., & Hall, W. (2013). Cost effectiveness of a palliative care program in a rural community hospital. Nursing Economics, 31 (4) , 176-183. Ramchandran, K., M.D., & Von Roenn, Jamie H, MD. (2013). Palliative care always. Oncology, 27(1), 13-6, 27-30, 32-4 passim. “Palliative care is coming to be regarded as a human right” (Wright, 2008, pg.1). As the baby boomer population ages, it will put increased pressure on an already strained health care system to meet their care needs. It will become more important than ever for physicians and health care systems to be fiscally responsible and good stewards of resources. Patients are also entitled to the best possible care and comfort when they have chronic, life-limiting, or terminal diseases. Cost Friedman, B. T., Harwood, M. K., and Shields, M. (2002). Barriers and enablers to hospice referrals: An expert overview. Journal of Palliative Medicine (5)1, 73-84. Our research revealed that the obstacles to timely

Palliative Care

Transcript: School-Aged Palliative Care When making decisions about life support, consider: Will the treatment make a difference? Do the burdens of treatment outweigh the benefits? Is there hope for recovery? If so, what will life be like afterward? What do I value? 1. Hospital unstable home care not appropriate consistent, coordinated, and therapeutic care plan 2. Home Care periodic nursing visits (meds, certain treatments, supplies) directed by primary physician Infants/toddlers Death has least significance in children <6 mo After forming attachment, any loss or separation is profound Future physical, emotional, social growth negatively affected by prolonged separation egocentric impossible to comprehend absence of life vague separation of fact and fantasy affected by change in lifestyle, not the actual death misdeeds cause death guilt and responsibility respond to logical explanations comprehend figurative meanings death is concrete fear mutilation and punishment associated with death personify death by ages 9-10 - adult concept of death mental confusion, decreased LOC respiration: slow or fast moaning adventitious sounds d/t mucous production skin: pale, bluish, mottled, blotchy d/t decreased o2 bowel and bladder incontinence possible physical disfigurement (tumor) Physical Signs of Approaching Death Preschoolers disease diagnosis/overall prognosis bias on progression on disease treatment options impacts of treatment on child Quality of life Child's history age premorbid conditions functional status pain or discomfort Death is consequential: believe thoughts can cause death guilt shame punishment minimal understanding departure - like sleep temporary and gradual cannot understand universality and invisibility of death Why do Clinicians limit or withdraw LST? Adolescents Quality of life is diminished with LST The outcome is not changed with continuing on LST since the child is palliative Personal beliefs about LST and values regarding quality of life Hospice Care mature understanding influenced by remnants of magical thinking see deviations as accepted behavior as reasons for illness Treatment Options found from: https://www.compassionandsupport.org/index.php/for_patients_families/life-sustaining_treatment How do children Conceptualize Death and Dying? Why would Parents forgo LST view dying as a natural process care is holistic, collaborative, ant multidisciplinary Priority is holistic comfort! family members are primary care givers no extraordinary efforts used patient and family are equally important (including post death) Life Sustaining Therapy

PALLIATIVE CARE

Transcript: Seniors often exhibit the cumulative effect of multiple conditions which have progressed over time, causing functional decline or frailty. Challenges Care focused on preventing, treating and relieving pain and other debilitating effects of serious or chronic illnesses. Care that addresses the patient's physical needs along with his or her emotional, social and spiritual needs. The goal is to improve the quality of life for patients and their families. In-patient services Time to devote to intensive family meetings and patient/family communication. Communication and support for resolving family/patient/physician questions concerning goals of care. Expertise in managing complex physical and emotional symptoms. Coordination of care transitions across health care settings. Challenges & Opportunities Seniors with serious illness are unlikely to recover, stabilize or be cured. For families this can be life-altering. Palliative care can help seniors and their families understand the nature of their illness and make timely informed decisions about their care. Basic palliative care assessment and treatment skills can be enhanced for clinicians caring for seniors. The big picture Opportunities Easton Cambridge Chestertown Eligibility: Patients of all ages who have a chronic or life-threatening illness that warrants additional care to control pain and other symptoms. Common medical conditions include cancer, diabetes, heart failure, chronic lung disease, advanced kidney disease, multiple sclerosis and advance dementia. PALLIATIVE CARE University of Maryland Shore Regional Heatlh Palliative Care Program Workplace shortages and funding may limit the spread and sustainability of existing programs.

Palliative care

Transcript: WHAT KIND OF PAIN IS IT? BY THE LADDER Treat the pain Physical discomfort- drain, bed sore, lymphedema Emotional issues- get psychologist involved Family- realistic goals, supportive care THE CONTINUUM OF PALLIATIVE CARE -Good quality palliative care can be defined as the care, which I would be happy to have given to a member of my own family if he or she was dying, or to receive myself when my time comes. IS IT NEUROPATHIC? What can I do to help? PALLIATIVE MEDICINE- WHAT IS IT? BY THE CLOCK BY THE MOUTH IS IT NOCICEPTIVE?

Palliative Care

Transcript: Develop a Palliative Care Team MSW RN Case Manager Chaplain Director- Champion Implement palliative care approach for all individuals with serious/chronic illnesses Patients with 5+ comorbidities Patients and family who ask about hospice and/or comfort measures Patients identified by MDT that may benefit by palliative care planning Develop specific plans of care with both the patient and families to assure that their goals and priorities align with their treatment while at the hospital Cost neutral for St. Alphonsus Medical Center Nampa Why does it matter? Benefits Outweigh the Costs Implementation of a Palliative Care Model (National Palliative Care Research Center, 2011) Other benefits? Despite the United States having the highest per-capita spending on health care in the world, 50% of Americans hospitalized with serious illness report less than optimal care In addition, more than 30% of families lose most or all of their savings while caring for a loved one with a serious illness (National Palliative Care Research Center, 2011) What can this program do for St. Alphonsus Nampa? Reduce harmful and unnecessary hospitalization for a high-risk, vulnerable patient population At the very least, it would be cost-neutral Increase patient satisfaction while improving quality of care What can be done? (National Palliative Care Research Center, 2011) Of the 1.5 Americans who die of serious/chronic illness each year, more than 70% are admitted to a hospital during the last six months of life Most people living with a serious illness experience inadequate treatment of symptoms, fragmented care, poor communication with their doctors, and enormous strains on their family caregivers What is the structure? Patient B 64 yo female, inpatient for over 8 days, original expected stay was 2 midnights Has over 5 chronic conditions Patient reports financial problems and that she may lose her insurance coverage Failed at ALF, medically compromised due to history of non-compliance Family with unrealistic expectations Anticipated Palliative Care Outcome Consult from PC team to develop plan of care with patient and family, ensure that treatment meets the patient's goals and expectations Decrease length of stay for patient, thus relieving some financial and family stress Develop better relationships with patient and family to determine patient's cause behind non-compliance Assist patient with accessing community supportive services that will better meet her needs (Dartmouth Institute for Health Policy and Clinical Practice, 2008; Administration on Aging, 2011) Overview (Center to Advance Palliative Care, 2011) Anticipated Palliative Care Outcome: Patient has consult from palliative care team and care plan is developed Patient is discharged within a shorter time frame, there is no lapse in contact with treatment providers (National Palliative Care Research Center, 2011) Patient A: 87 yo male, admitted for 7 days Indicated prior to admission that he wanted to access hospice services Hospital changed his status to comfort measures on day one Patient went without seeing a physician on day three Discharge orders were completed on day four, but patient was not discharged until day seven Palliative care programs have emerged as a way to address these gaps in services Palliative care programs provide a team-based care approach and are designed to provide specialized medical care focused on providing relief from symptoms, pain and stresses of serious illness- whatever the diagnosis may be The goal of these programs is to improve quality of life for both the patient and the family Does it work? (Center to Advance Palliative Care, 2011) Palliative care teams interview patients about goals for care, symptoms and other issues that may be bothering them, and the needs of their families. Palliative care teams work hand-in-hand with patients and families in order to outline the treatment priorities and goals in a specific plan of care. The overall goal is to ensure that the care is aligned with specific patient needs and that it is "driven by their needs", not as a list of medical problems Approximately 90 million Americans are living with a serious illness. This number is expected to more than double over the next 25 years According to the Administration on Aging, by 2030 there will be over 72.1 million Americans over the age sixty-five in the U.S. (approximately 20%) Most baby boomers are now living well into their mid-eighties, but it has been found that with age comes the burden of chronic illness Palliative care teams have created a direct impact on cost reduction through: Decreased ICU and pharmacy costs Decreased hospital costs by decreased lengths of stay and unnecessary tests Efficient coordinated care transitions If fully integrated into the nation's hospitals, total savings could exceed over six billion dollars per year Improved relationships between patients, families and health care professionals (National Palliative Care Research

Palliative Care

Transcript: Patients Receiving Palliative Care - Based on Diagnoses Improve patient's experience Better quality of life Less pain, SOB, depression Patient/family are more satisfied Preferred Management for Patients with Advanced Heart Failure Sources: American College of Cardiology American Heart Association Benefits of Palliative Care Presented by: Neil Ryan A. Razal Limited knowledge on Palliative Increase awareness Improve guidelines on referrals Focus on the benefits Source: Palliative and Hospice in Advanced Heart Failure. LeMond and Allen (2013). Palliative Care Advanced Heart Failure Barriers in Palliative Care Conclusion Guidelines (what, why, when, how) Knowledge deficits (palliative vs Hospice) Clinicians are reluctant to discuss poor prognosis Source: CDC Morbidity and Mortality Weekly Report, MMWR Barriers in Palliative Care Palliative Care Understand the what, why, when, and how of Palliative care Understand the benefits of Palliative Care Discuss patients' options Chronic and life-limiting condition Debilitating symptoms Shortness of breath at rest Weakness, fatigue Taxing effort Source: Clinical Practice Research Datalink,2014 Share your mini study CMS - coordinated care for relief of pain and symptoms. WHO - coordinated care that includes the patient, family and caregiver, and medical providers Advanced Heart Failure Leading cause if death - United States, 2005 - 2011 "Premature" and alarming Overestimates the benefits of life-prolonging treatments Poor understanding on prognosis Factors in Palliative Care Placement What do we need to do?

Palliative Care

Transcript: Benefits of Expressive Writing Palliative care is only growing rapidly as it taking the healthcare system by storm. "In the United States today, 55% of hospitals with more than 100 beds offer a palliative-care program, and nearly one-fifth of community hospitals have palliative-care programs" (Lynn 2006) The hollistic approach that palliative care takes allows for not only the patient/family to emotionaly and mentally process such a disruptive time but the nursing staff can understand their patients. Programs run by Mount Sinai Hospital like the Hertzberg Insitiute, believe that through pallative care nurses are better prepared to help patients with serious illness, brining many stressful responsibilities. (Andershed et al. 2007) The idea of using artstic expression for health releated benefits is not new. Throughout history, cultures have imbraced pictures, writing, dance, and chants for healing rituals. (Graham-Pole J.2000) In modern day, art therapy has been institutionlized as early as the 1990s in the United States. A prime example is the Mount Sinai Hospital, through its Hertzberg Insitiutue. Health psychologists have cautiously begun looking at how the arts might be used in a variety of ways to heal emotional injuries, increase understanding of oneself and others, develop a capacity for self-reflection, reduce symptoms, and alter behaviors and thinking patterns(Camic PM, 2008) One of the orginal and largest pallative care centers, they recieve the largest grants from the NIH(National Institute of Health) to perform research in methods for palliative care. Through their arts therapy program, the institute hires art therapy specialists to guide patients and family memebers through education, playful, and self-expresion excersises. Since recently, "The Loom", has been a program launced annualy. https://issuu.com/palliativecare/docs/the_loom_fall_2015/1 What is palliative care? Leading researchers, James W. Pennebaker and Janeal D. Seagal famoulsy conducted an expressive writing study that demonstrated emotional and mental benefits. Pennebaker has gone on to express that multiple levels that writing occurs on such as cogntive, social, emotional, and biological is the reason why a single theory is unlikely (Pennebaker et al. 1999). A qualitative study conducted by Boston University, studied the benefecial effects of meaningful writing on a group of 16 resilient male survivors of severe sexual abuse. All subjects were of differrent backgrounds, races, ethncities, and socioeconomic influnces. Describing tramuatic expereinces through creative meaning helped the subjects to describe and process the abuse. One of the men are quoted from the study as describing his creative approach for writing fiction and non fiction, " go inside and be characters. Create characters. Fantasize. That was the safe space." (Grossman et al, 2008) Palliative Care Through the Arts Background Paving the Way Palliative care provides physical, emotional, and spiritual support to patients and their families. Through a team of medical personnel — including doctors, pain management specialists, nurses, social workers, and therapists — palliative care helps prevent and relieve pain and suffering while also easing stress, anxiety, and the fear associated with serious illness. (Gavin,MD) Hertzberg Instiute

Palliative Care

Transcript: PALLIATIVE CARE Linda Drury, PA-C 10/3/13 1981 BS Zoology U. of North Carolina, Chapel Hill 1991 BS Allied Health, Charles Drew U. of Medicine and Science, LA, California 1991-1995 Hematology/Oncology, Children’s Hospital of Los Angeles 1995-2000 Pediatric Oncology, Johns Hopkins, Baltimore, MD 2000-2002 Peace Corps Volunteer, Ecuador 2002-2005 Neurogenetics Lab, MGH, Boston, MA 2005-2010 DFCI: Lee Nadler, MD Indolent Leukemia/Lymphoma; Marcus Butler, MD/Nicholas Haining, BM, BCh Phase I trials 2010- present Intensive Palliative Care Unit (IPCU), BWH, Boston, MA OBJECTIVES: WHAT is Palliative Care? WHO is Palliative Care for? WHY do we need Palliative Care? WHERE do you DO Palliative Care? WHEN should Palliative Care begin? HOW: How do you provide Palliative Care? HOW IT IS: To say this was a time of unreal and unparalleled confidence, bordering on conceit, in the Western medical world is to understate things. Only cancer was truly feared, and even that was often curable. When the outcome of treatment was not good, it was because the host was aged, the protoplasm frail, or the patient had presented too late - never because medical science was impotent. ….There seemed to be little that medicine could not do. My Own Country, Abraham Verghese DEATH IS A FAILURE: “There’s nothing else to do.” “I have nothing more to offer you.” WHAT DO PATIENTS WITH SERIOUS ILLNESS WANT Pain and Symptom control Avoid inappropriate prolongation of the dying process Achieve a sense of control/dignity Relieve burdens on family Strengthen and completing relationships with loved ones Singer, Martin, & Kelner (1999). Quality end of life care: Pt’s perspectives, JAMA, 28(2); 163-168 Steinhauser et al (2000). Factors considered important at the End of Life by patients, family, physicians, and other care providers. JAMA 284(19); 2476 - 2482 WHAT THEY GET: National Data on the Experience of Advanced Illness in 5 tertiary care teaching hospitals: 9000 pt with life-threatening illness of whom 50% died within 6 months of study entry Half of the patients had moderate-severe pain more than 50% of last three days of their life 38% of those who died spent >10 days in the ICU, in a coma, or on a ventilator. (Center to Advance Palliative Care. JAMA 1995; 274: 1591-98) WHAT DO FAMILY CAREGIVERS WANT? Loved one’s wishes honored Inclusion in the decision process Support/assistance at home Practical help (transportation, medicines, equipment) Personal care needs (bathing, feeding, toileting) Honest information 24/7 access To be listened to Privacy To be remembered and contacted after the death (Toole et al> Oregon report card 1999 www.ohsu.edu/ethics) WHAT DO THEY GET? Not enough contact with the MD: 78% Not enough emotional support (pt): 51% Not enough information about what to expect with the dying process: 50% Not enough emotional support (family): 38% Not enough help with pain/SOB: 19% (Teno et al. JAMA 2004; 291-88-93) Most people today do not suddenly, they die incrementally. The delivery of health care, from staffing to billing, is organized around institutions instead of around patients. Gradual dying is treated as a medical crisis instead of a natural process. Stephen Kiernan, Last Rights; Rescuing The End of Life from the Medical System SUPPORT TRIAL: (Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatments) JAMA. 1995 Nov 22-29; 247 (20): 1591-8. 29 million $ effort sponsored by the Robert Wood Johnson Foundation to improve the quality of care towards the end of life in patients with serious illness, 5 U.S. teaching hospitals 9105 adults hospitalized with one or more of 9 life-threatening diagnoses Overall mortality 47%. OBJECTIVES: To improve end-of-life decision making Reduce the frequency of a mechanically supported, painful, and prolonged process of dying. INTERVENTIONS: Physicians of patients in the intervention received Estimates of the probability of survival over six months] Estimates of the outcomes of CPR Estimates of the probability of severe functional disability at 2 months. Documentation of patient and family care preferences Access to a nurse interventionist to facilitate communication, including helping to carry out needed communication and facilitating meetings. CONCLUSION: No impact on each of these key outcome measures: Earlier writing of DNR orders Physicians knowledge of their patients' preferences for CPR Number of days spent in an ICU before death Patient reports of moderate or severe pain Use of hospital resources Confirmed substantial shortcomings in care for seriously ill hospitalized adults. Intervention failed to improve care or patient outcomes. HAS ANYTHING IMPROVED IN THE LAST 16 YEARS? Palliative Medicine has undergone great growth since SUPPORT. Hospital-based Palliative Medicine programs are now very common. They were practically unheard of at the time of SUPPORT. In the US, 55% of hospitals with more than 100 beds offer a palliative-care program, and nearly one-fifth of

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