Euthanasia Physician assisted suicide Giving up Discontinuing care Morphine drips Last hours Death squads Hospice

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1 Robin Kleronomos, MS, APN, ANP-BC, ACHPN Palliative Medicine Nurse Practitioner Cadence Physician Group Define palliative care Discuss common misconceptions of palliative care Identify ICU patients that would benefit from palliative care Identify most distressing symptoms pts report Identify models of palliative care in the ICU Discuss the family care conference related to best practice Discuss and describe process for withdrawing lifesupport or treatments no longer medically indicated Specialized medical care for people with serious illnesses. It is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness - whatever the diagnosis. The goal is to improve the quality of life for both the patient and the family. WHO 2003 Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illnesses. It is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work together with a patient's other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment. CAPC Palliative care is defined as both a philosophy of care and an organized highly structural system for delivering care (National Consensus Project (NCP), 2013). Palliative care is provided by an interdisciplinary team to those with serious and life-threatening illnesses with a focus on symptom relief. Palliative care focuses on the physiological, psychological, social and spiritual needs of patients and their families and can be initiated at any stage ofthe illness. Euthanasia Physician assisted suicide Giving up Discontinuing care Morphine drips Last hours Death squads Hospice

2 Do everything until there is nothing more to do and then give comfort care only vs. Palliative Care initiated at the time of diagnosis, independent of prognosis, and delivered simultaneously with curative life extending treatments 540,000 Americans die in ICUs annually 29.2% of Medicare patients who die are treated in the ICU in the last 30 days of life 1 in 5 receive ICU services before they die 59% of all hospital deaths occur in the ICU 80% of all terminal inpatient costs McAdam & Puntillo, 2010 Nelson et al. 2010; Teno et al Which of the following Critical Care 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 who is neutropenic & septic C. 57-year-old with newly diagnosed amyotrophic lateral sclerosis D. 76 year-old with Parkinson s disease who was just diagnosed with metastatic liver cancer Pain Dyspnea Dry Mouth/Xerostomia Nausea/Vomiting Constipation Anxiety Delirium Depression PTSD Hiccups Seizures Sleep disorders Wounds Nutrition (appetite) Dehydration Diarrhea

3 The interdisciplinary Advisory Board of the Improving Palliative Care in the ICU project found that the three most prevalent, intense and distressing symptoms patients suffered from while in the ICU were: PAIN DYSPNEA THIRST An unpleasant sensory and emotional experience associated with actual or potential tissue damage What the person says it is Pasero & McCaffery, 2011 Trauma Cardiac disease Acute abdominal pain Preexisting chronic pain Suffering Post-surgical Procedures Wounds/burns Cancer Intubation Increased physiologic stress Diminished immunocompetency Decreased mobility Increased risk of pneumonia and thromboembolism Increased myocardial demand Decreased quality of life Importance of discussing barriers Specific barriers Professionals Health care systems Patients/families REMS Paice, 2010; Pasero & McCaffery, 2011 Providing adequate pain and symptom control Decrease distress caused by pain in the patient and family Provide an acceptable sense of control Relieve caregiver burden Strengthen relationships Optimize QOL Enhance meaning of life and illness, providing personal growth NCCN, 2012

4 PATIENT HISTORY Max, 46 year old male with colorectal cancer with metastatic disease to the liver Iraqi War Veterans lost his leg in combat 3 years ago Married with 2 children Admitted to ICU with sepsis after colorectal surgery to resect the tumor No discussions by healthcare team about goals of care ISSUES RELATED TO PAIN Incisional pain poorly managed Stump phantom pain has never been addressed Patient is afraid of narcotics and addiction Wife is afraid he will become tolerant of drugs Is Max a candidate for palliative care? What are the barriers regarding Max s s pain relief? Are there culture issues related to him being a Veteran? Is there an ethical issue regarding poor pain management? Are there additional medications Max should be instructed to take at home? How could his diagnosis + pain issues affect him physiologically and spiritually? Are you comfortable sending him home with a pain score of 8 and knowing that his phantom pain has never been assessed? Who should you speak to? What would that conversation sound/look like? Distressing shortness of breath Associated diseases Dudgeon, 2010 Major pulmonary causes Major cardiac causes Major neuromuscular causes Other causes Use subjective report Clinical assessment Physical exam Diagnostic tests Dudgeon, 2010 Treating symptoms or underlying cause Pharmacologic treatments Opioids Bronchodilators Diuretics Steroids Buckholz, 2009; Myers & Dudgeon, 2011; Rocker et al, 2013

5 Nonpharmacologic Oxygen Ventilator support Balance rest with activity Optimize positioning Dudgeon, 2010 Blood transfusion Thoracentisis Self-expanding expanding stent placement Laser or radiation Paracentesis Epidural Yuruk et al, 2012; Arber et al, 2013; Gompellman et al., 2013; Papiris, 2006; Zetterman, 2013 Dry mouth Difficulty in mastication, swallowing, and speech Can be caused by medications, radiation, and systemic diseases Walker, 2011 b Conduct regular assessment if pt can self report Examine mouth and tongue for dryness, cracking, infection Recognize risk: NPO, anticholinergics, opioids Assume the pt is thirsty Frequent mouth care Use water soaked or frozen gauze, water sprays, ice chips. Consider artificial saliva Consider heat humidifiers for pt on high flow O2 Evaluate and document effect of interventions Use mouth and lip moisturizer NO LEMON GLYCERIN SWABS Decisions are made when: The capable patient requests withdrawal Prognosis for recovery to acceptable baseline is poor Death is near and inevitable Coma expected to persist Critical Care Nurse role prepares, supports and reassures patient and family Provide educational support for staff regarding withdrawal of ventilator support Prepare in advance Pre-medicate

6 ADVANTAGES Expert interdisciplinary team of specialists Expertise already exists, no additional training Benefits of empirical evidence Continuity of care before, during and after ICU Team can help facilitate transfer to floor or home with hospice if needed DISADVANTAGES Palliative Service must have enough staff and resources Team may be seen as outsiders Consultants must quickly establish a good relationship with patient and family Care may seem more fragmented ICU team less motivated to improve their own palliative care skills and knowledge ADVANTAGES Availability for all icu patients and families Palliative care service not needed Recognizes palliative care as core element of ICU The structure of ICU work processes promotes reliable delivery of palliative care DISADVANTAGES Need for education of ICU staff in palliative care knowledge and skills Necessary commitment of clinicians and a supportive ICU culture Requires dedicated staff and resources that may be lacking in ICU Necessary handoff to new team post ICU Communication is a fundamental tool of palliative care nursing Given the polarity of life saving efforts versus withdrawal of treatment in intensive and emergency units, communication is critical Staff are not always trained in communication Dahlin, 2010; Perrin, 2010, Villagran et al., 2010; Wittenberg-Lyles et al., 2010a Information about condition and anticipated course of illness Treatment options and information about the specific therapies Advance care planning about goals, preferences and wishes Breaking bad news Prognosis discussion

7 Need of information for informed choices Synthesizing information Disclosure of feelings and verbalization of fears Maintaining sense of control Discuss meaning of life Maintaining hope Reassurance of pain and symptom management To be with patient Information and frequent updates for decisionmaking Permission to speak and be listened to Changes in patient s conditions Assurance of comfort Open communication Discussing bad news Speaking with MDs about palliative care Discussing spiritual concerns Talking with patients/families from different cultures Malloy et al., 2010 Listening to and supporting patients and families Providing and clarifying information to enable decision-making Dahlin, 2010 Update frequently Reinforce information Be present Participate in family meetings Review options Support decisions Advocate Present during dying Post-death support Includes body language, eye contact, gestures, tone of voice 80% of communication is nonverbal Boreale & Richardson, 2011; Dahlin, 2010

8 Being present, being silent Occurs at 5 levels Hearing Understanding Retaining information Analyzing Active empathizing Krammer et al., 2011; Ray, 1992 Allow flow of conversation without interruption Encouragement to talk Use of silence Herbert et al., 2011 Comfortable with self Know the person Connect Affirm and value Be vulnerable Use intuition Empathize Be in the moment Provide serenity & silence Boreale & Richardson, 2011; Krammer et al., 2011 How are things going for you/your family? How do you think you/your loved one is doing? What has the doctor told you/your family? What do you understand about your condition? How can we support you? Many purposes: updates, goals of care, advance care planning Advance care planning includes values, preferences, and beliefs Consistency and continuity promote open communication and better care Good communication is a vital part of this task Critical Care Nurses are in the position of providing clarification and providing support McAdam & Puntillo, 2010; Scott, 2010

9 Communication is complex The ultimate objective is the patient s best interest Patient/family must be involved Critical care nurses role is to promote communication to colleagues, patient and family The Center to Advance Palliative Care (CAPC) is a national organization that provides tools, training and technical assistance necessary to start and maintain palliative care programs. The IPAL project was an initiative of CAPC designed to provide a central venue for sharing expertise, evidence, tools and resources to improve palliative care. The first project was IPAL-ICU (Improving Palliative Care in the ICU) launched in 2010 with support from the National Institutes of Health IPAL-ICU IPAL-EM Fast Facts are peer reviewed, one page summaries of key information for clinicians caring for seriously ill patients. The following table lists the Fas All Fast Facts are available for free downloading at Fast Facts are peer reviewed, one page summaries of key information for clinicians caring for seriously ill patients. The following table lists the Fast Facts of greatest interest for clinicians involved with ICU care. All Fast Facts are available for free downloading at (after 1/15 will be on CAPC website) Number Title #21 Hope and Truth Telling #23-24 Discussing DNR orders #33-35 Ventilator Withdrawal Protocol: Part 1-3 #42 Broaching the topic of a palliative care consultation with patients and families #47 What do I tell the children? #55 Decision Making Capacity #64 Informing significant others of a patient s death #76-77 Telephone notification of death # Controlled sedation for refractory suffering #120 Physicians and Prayer Requests #122 Palliative Care and ICU Care--Pre admission assessment #123 Palliative Care and ICU Care--Daily ICU care plan checklist #160 Screening for ICU delirium #163 Decision making in chronic kidney disease # Informed consent in palliative care #179 CPR survival in the hospital setting # Conflict resolution #191 Prognostication in dialysis patients #203 Managing one s emotions as a clinician #219 Responding to requests for non-disclosure # Running a family goal setting meeting

10 Questions??? The End-of-Life Nursing Education Consortium (ELNEC) Project is a national end-of-life educational program administered by City of Hope National Medical Center (COH) and the American Association of Colleges of Nursing (AACN) designed to enhance palliative care in nursing. The ELNEC Project was originally funded by a grant from the Robert Wood Johnson Foundation with additional support from funding organizations (the National Cancer Institute, Aetna Foundation, Archstone Foundation, California HealthCare Foundation and the Department of Veterans Affairs). Materials are copyrighted by COH and AACN and are used with permission. Further information about the ELNEC Project can be found at See also reference attachment