8/27/2018. Introduction to Palliative Care for the Primary Care Provider. Why Now?

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1 Introduction to Palliative Care for the Primary Care Provider Debbie Miller-Saultz, DNP, FNP-BC October 20, 2018 NYS NPA Annual conference Why Now? EVOLVING DEFINITION OF PALLIATIVE CARE Year Source and Definition Comments World Health Organization (WHO): " The active total care of patients whose 1990 Does not apply exclusively to palliative care disease is not responsive to curative treatment." The Oxford Textbook of Palliative Medicine: "The study and management of Lacks essential aspects, such as support provided 1993patients with active, progressive, far-advanced disease for whom the prognosis is to families, as well as specificity about timing limited and the focus of care is the quality of life." National Consensus Project: "The goal of palliative care is to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of the disease or the need for other therapies " Palliative care expands traditional disease-model medical treatments to include the First definition to reflect integration of palliative 2004 goals of enhancing quality of life for patient and family, optimizing function, care earlier into the disease continuum helping with decision making, and providing opportunities for personal growth. As such, it can be delivered concurrently with life-prolonging care or as the main focus of care. WHO (revision): "An approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through Improvement over original WHO definition, but 2007the prevention and relief of suffering by means of early identification and expansion of palliative care throughout the impeccable assessment and treatment of pain and other problems, physical, continuum of care not explicit psychosocial, and spiritual." American Society of Clinical Oncology: "Palliative cancer care is the integration into cancer care of therapies to address the multiple issues that cause suffering for Defines palliative care for patients with cancer, patients and their families and have an impact on the quality of their lives but definition can be applied to palliative care in Palliative cancer care aims to give patients and their families the capacity to all settings realize their full potential, when their cancer is curable as well as when the end of life is near." National Consensus Project: "Palliative care means patient and family-centered Characterization of palliative care in the United care that optimizes quality of life by anticipating, preventing, and treating States,; as defined by the U.S. Department of 2013suffering. Palliative care throughout the continuum of illness involves addressing Health and Human Services and the National physical, intellectual, emotional, social, and spiritual needs and to facilitate patient Quality Forum autonomy, access to information, and choice." World Health Organization. Cancer Pain Relief and Palliative Care. Technical Report Series 804. Geneva: World Health Organization; Doyle D, Hanks GWC, McDonald N. Introduction. In: Doyle D, Hanks GWC, MacDonald D (eds). Oxford Textbook of Palliative Medicine. Oxford: Oxford University Press; 1993: 3. National Consensus Project for Quality Palliative Care Consortium Organizations. Clinical Practice Guidelines for Quality Palliative Care. 3rd ed. Pittsburgh, PA: National Consensus Project; World Health Organization. WHO Definition of Palliative Care. Geneva: World Health Organization; Ferris F, Bruera E, Cherny N, et al. ASCO Special Article. Palliative cancer care a decade later: accomplishments, the need, next steps from the American Society of Clinical Oncology. J Clin Oncol. 2009;27(18):

2 National Consensus Project for Quality Palliative Care (NCP) Members: AAHPM,CAPC, HPNA, HASW,NHPCO & NPCRC Tenets of Palliative Care (2013) : The goal of palliative care is to prevent and relieve suffering, and to support the best possible quality of life for patients and their families, regardless of their stage of disease or the need for other therapies, in accordance with their values and preferences. Palliative care is both a philosophy of care and an organized, highly structured system for delivering care. Palliative care expands traditional disease-model medical treatments to include the goals of enhancing quality of life for patient and family, optimizing function, helping with decisionmaking and providing opportunities for personal growth National Academies of Medicine- Institute of Medicine Report ( 2014) Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life The rapidly increasing number of older Americans with some combination of frailty, physical and cognitive disabilities, chronic illness, and functional limitations. The U.S. population is quickly becoming more culturally diverse, heightening the need for responsive, patient-centered care. The nation s health care system is increasingly burdened by factors that hamper delivery of high-quality care near the end of life, including Barriers in access to care that disadvantage certain groups; a mismatch between the services patients and families need and the services they can obtain; Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life Improving the quality and availability of medical and social services for patients and their families could not only enhance quality of life through the end of life, but may also contribute to a more sustainable care system. Inadequate numbers of palliative care specialists and too little palliative care knowledge among other clinicians who care for individuals with serious advanced illness; A fragmented care delivery system, spurred by perverse financial incentives, that contributes to the lack of service coordination across programs and unsustainable growth in costs. 2

3 NCP Domain Recommendations Domain 1: Structure and Processes of Care Comprehensive interdisciplinary assessment of patient and family Addresses identified and expressed needs of patient and family Interdisciplinary team consistent with plan of care Education and training Emotional impact of work Team has relationship with hospices Physical environment meets needs of patient and family Domain 2: Physical Aspects of Care Pain, other symptoms, and treatment side effects are Team documents and communicates treatment alternatives permitting patient/family to make informed choices Family is educated and supported to provide safe/appropriate comfort measures to patient Domain 3: Psychological and Psychiatric Aspects of Care Psychological and psychiatric issues are assessed and managed Team employs pharmacologic, nonpharmacologic, and complementary therapies as appropriate Grief and bereavement program is available to patients and families 3

4 Domain 4: Social Aspects of Care Interdisciplinary social assessment Care plan developed Domain 5: Spiritual, Religious, and Existential Aspects of Care Referral to appropriate services Assesses and addresses spiritual concerns Recognizes and respects religious beliefs provides religious support Makes connections with community and spiritual/religious groups or individuals as desired by patient/family Domain 6: Cultural Aspects of Care Assesses and aims to meet the culture-specific needs of patients and families Respects and accommodates range of language, dietary, habitual, and ritual practices of patients and families Team has access to/uses translation resources Recruitment and hiring practices reflect cultural diversity of community Domain 7: Care of the Imminently Dying Patient Signs and symptoms of impending death are recognized and communicated As patients decline, team introduces or reintroduces hospice Signs/symptoms of approaching death are developmentally, age, and culturally appropriate 4

5 Domain 8: Ethical and Legal Aspects of Care Patient s goals, preferences, and choices are respected and form basis for plan of care Team is aware of and addresses complex ethical issues Team is knowledgeable about relevant federal and state statutes and regulations NYS Family Health Care Decision Act (2010) This Law allows patient s family member or close friend to act as surrogate for that patient who lacks decisional capacity and has not left prior instruction to direct care or has appointed a health care proxy. The Law is defined by 3 Principles Principle 1- Patients with decisional capacity a right to consent or decline ANY treatment, including artificial nutrition or hydration. Principle 2- Patients without decisional capacity, life sustaining treatment CAN be withdrawn or withheld if there is a clear and concise evidence that this was the patient s wishes. Principle 3- In the case of incapacity, if there is NO evidence to support the patient s wishes for life- sustaining treatment, the treatment MUST continue. For medical issues other than resuscitation, patients who lack capacity, have no health care proxy and are not developmentally delayed, withdrawal or withholding of treatment is dependent upon clear and concise evidence of the patient s wishes. NYS Law Palliative Care Information Act Chapter 331 of the Laws of Amended Public Health Section 2997c Added a requirement that physicians and NPs offer terminally-ill patients information and counseling concerning palliative care and end-of-life options to patients with: An illness or condition that is reasonably expected to cause death within six months Including: Prognosis Range of options Risks and benefits of various options Patient's "legal rights to comprehensive pain and symptom management at the end of life." 5

6 NYS Law Palliative Care Information Act Chapter 331 of the Laws of Amended Public Health Section 2997c (3) Effective February 9, 2011, Palliative care, as defined by the law, is "health care treatment, including interdisciplinary end-of-life care, and consultation with patients and family members, to prevent or relieve pain and suffering and to enhance the patient's quality of life, including hospice care." NYS Public Health Law Section 2960 as added by chapter of the laws of 1897 Senate Bill S1869A/Assembly Bill A 07277A into law, amending the New York State Public Health Law 2960 to allow attending nurse practitioners (NPs) to sign Do Not Resuscitate (DNR) orders and Medical Orders for Life-Sustaining Treatment (MOLST). The law went into effect on May 28, 2018, molst/ 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 Adapted from Ferrell, et al

7 Chronic Disease US Chronic diseases account for 70% of all deaths. US -48 million Americans report a disability related to a chronic disease. Arthritis most common 8.6 million Spine or Back Problems -7.6 million Heart Problems - 3 million 2030 Age 65> 6/10 will be managing more than one chronic disease. Living Well with Chronic Illness. A Call for Public Health Action. Institute of Medicine (IOM) 2012 Chronic and Advanced Illness Cancer Diabetes Dementia COPD CHF Chronic Infections-Decubitus Ulcers Arthritis- OA/RA Psychiatric Illness Spinal Cord Injuries Neurological Disease J. Lynn & D.M. Adamson, 2003, Washington, DC: RAND Health. 7

8 Palliative Care is Appropriate at any Point in a Serious Illness Diagnosis of Serious Illness Life Prolonging Treatment Palliative Care Medicare Hospice Benefit Chronic Disease 2 20 years Seriously Ill months Hospice 6 months < CAPC 2013 Palliative Needs in Patients with Serious Illness Palliative Care Trajectories Acute Decline Coping with shock of illness Symptom management Establish goals of care Facilitate communication Address psychosocial needs 8

9 Palliative Care Trajectories Roller Coaster Trajectory Symptom Management Adjusting to new baseline Advanced care planning Support in decision making Slow Decline Trajectory Symptom management Support in decision Making/ACP Care coordination Difficulty in Prognostication Patients and /or family, caregiver do not understand the severity and progressive nature of the disease. Impedes the ability of patients and families, caregivers to make necessary end-of-life decisions. Leads to late referrals UCSF Palliative Performance Calculators American Society of Clinical Oncology (ASCO) Model of Palliative Care 9

10 Institute for Clinical Systems Improvement. Health Care Guideline: Palliative Care. 5th ed 2013 Establishing Goals of Care Family meeting with interdisciplinary care team Establishing what patient and family about disease process Clarify that palliative care is Trajectory of illness Focus on what will be done- Functional status, comorbid illnesses, stage or class of disease Complete advance directives Know various types Developing Plan of Care that address goals of care Revisit plan frequently with provider and/ or team, including family Communicating Prognosis--- Family challenges in setting Goals of Care Family do not understand disease trajectory or prognosis Family dynamics Legal/ethical concerns Financial issues 10

11 Symptom Management Pain Common or complex presentations Respiratory Symptoms Shortness of breath, coughing, wheezing GI Symptoms Nausea, constipation,vomitting Psychological Symptoms Depression, delirium, anxiety 32 When should a Palliative Care referral be made? Patient, family or physician uncertainty regarding prognosis Patient, family or physician uncertainty regarding appropriateness of treatment options Patient or family requests for futile care DNR order conflicts/need for Advance Care Planning Conflicts regarding the use of non-oral feeding/hydration in cognitively impaired, seriously ill, or dying patients Limited social support in setting of a serious illness (e.g., homeless, chronic mental illness) Patient, family or physician request for information regarding hospice appropriateness Patient or family psychological or spiritual distress New diagnosis of life-limiting illness for symptom control, patient/family support. Need for Coordination of Care Declining ability to complete activities of daily living Weight loss/failure to thrive Progressive metastatic cancer Admission from long-term care facility Two or more hospitalizations illness w/in three months Difficult to control physical or emotional symptoms Advancing Dementia 11

12 When Should a Palliative Care referral be made? Cancer Criteria Metastatic or locally advanced cancer progressing despite systemic treatments Karnofsky < 50 or ECOG > 3 Brain metastases, spinal cord compression, or neoplastic meningitis Malignant hypercalcemia Progressive pleural/peritoneal or pericardial effusions Neurological Criteria Folstein Mini Mental score <20 Feeding tube is being considered for any neurological condition Status Epilepticus > 24 hrs ALS or other neuromuscular disease considering mechanical ventilation Any recurrent brain neoplasm Parkinson s disease with poor functional status or dementia Silver Hour Palliative Care Consults Palliative care consultations reduce costs. A review of data for Medicaid beneficiaries (with a variety of life-limiting diagnoses) at four hospitals in New York showed that hospital costs were an average of $6,900 lower during a given admission for patients who received palliative care than for those who received usual care. Morrison RS, Dietrich J, Ladwig S, et al. Palliative care consultation teams cut hospital costs for Medicaid beneficiaries. Health Aff. 2011;30(3):

13 Decision-Making Issues 37 Informed consent Decision-making capacity Nature of decision Risks/benefits and alternatives Decision-making for those without capacity Health care agent Advance directives Decision-Making for Those Without Capacity 38 Health care agent Surrogate: named by person while competent, or if not, indicated by state law Proxy: the document that names the health care agent or health care agent Advance Directives 39 Definition: Legal documents that allow individual to convey decisions about end-of-life care ahead of time. Most important: Legal designation of an agent or durable power of attorney Other types: Living Will, Home DNR 13

14 Advanced Directives Health Care Proxy- The Health Care Proxy Law, Article 29 C of the New York Public Health Law, enables competent adults to protect their health care wishes by appointing someone they trust a health care agent to decide about treatment on their behalf when they are unable to decide for themselves. Unless stated otherwise, a health care agent can make all decisions that the patient could make while competent. Medical Orders for Life- Sustaining Treatment (MOLST) In contrast to a health care proxy, the MOLST applies as soon as a patient consents to the orders in it and a physician signs it. It is not conditional on a physician's determination that a patient has lost medical decision-making capacity ocs/checklist_4.pdf MOLST FORM DOH doh-5003.pdf ionals/patients/patient_rights/mols t/docs/general_instructions_and_ glossary.pdf MOLST Legal Requirements Checklist for Individuals with Development Disabilities Checklist MUST be completed and INCLUDED with MOLST form 14

15 Why Nurses need to be Palliative Care Leaders A Few Reasons.. Nursing has a long history of advocating for and responding to the needs of the seriously ill and dying. Nurses are coordinators of care across settings from Hospital to Community. Nurses are strong advocates for public policy, including measures that promote access to care, remove barriers that restrict quality pain and symptom management, and reduce health disparities and inequity. Nurses are patient advocates capable of leading public discourse and education. Nurses are the most trusted profession (Gallup 2013) and are trusted by the public for honesty and high ethical standards. Hospice and Palliative Care Nursing Assoc. ( HPNA) 2014 The Future Moving Palliative Upstream- Advanced Chronic Illness Models Every Primary Care Provider should be educated in Generalist Palliative Care Principles Increase in the number of NP Fellowships in Palliative Care Generalist and Specialist Certification for RNs and NPs Position Statements: Artificial Hydration and Nutrition in Advanced Illness Assuring High Quality in Palliative Care Legalization of Assisted Suicide Palliative Sedation Role of the Nurse when Hastened Death is Requested The Ethics of Opiate Use Within Palliative Care The Nurses Role in Advance Care Planning Withholding and /or withdrawing Life Sustaining Therapies 15

16 Resources Resources/training: HPNA (Hospice and Palliative Care Nursing Association) ELNEC (End of Life Nursing Education Consortium) AACN EPERC (End of Life/Palliative Education Resource Center) CAPC (Center to ADVANCE palliative care) NHPCO (National Hospice and Palliative Care Organization) Palliative Care Network of Wisconsin Fast Facts and Concepts facts References Ferrell, B (2017) Palliative Care Comes Of Age: National Consensus Project Clinical Practice Guidelines for Quality Palliative Care, 4th Edition The Palliative Pulse September 2017 References Institute for Clinical Systems Improvement. Health Care Guideline: Palliative Care. 5th ed Institute Of Medicine Report ( 2014) Dying in America: Improving quality and honoring individual preference near the end of life NYC Department of Health and Mental Hygiene ( 2012) City Health Information NYS Advance Directives (2012) NYS Law Palliative Care Information Act Chapter 331 of the Laws of Amended Public Health Section 2997c (3) 16

17 References National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care ( 2018) 4 th Ed. National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care. ( 2013) 3 rd ed. Pittsburgh, PA. National Consensus Project O Mahoney,S, Jones,R,etal (2018) A Guide for Palliative Medicine Clinicians Taking Care of Lesbian, Gay, Bisexual, and Transgender Patients Using a Whole Person Care Approach (SA516) Journal of Pain and Symptom Management 55( 2) References SUPPORT Principle Investigators. A controlled trial to improve care for the seriously ill hospitalized patients: the study to understand prognoses and preferences for outcomes and risks of treatment. (SUPPORT) JAMA.1995;274 (20): World Health Organization 2002,

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