Palliative Care; A Nursing Response E. Veronica Cheney, RN, BSNS American Nurses Association – Palliative Care Scope of Practice “Purpose: Nurses have always been at the bedside of dying patients. Their role in providing the highest quality of remaining life and support at the end of life for both patients and their loved ones is traditional, accepted, and expected. The nurse’s fidelity to the patient requires the provision of comfort and includes expertise in the relief of suffering, whether physical, emotional, spiritual, or existential. Increasingly, this means the nurse’s role includes discussions of end-of-life choices before a patient’s death is imminent. The purpose of this ANA Position Statement is to articulate the roles and responsibilities of registered nurses in providing expert end-of-life care and guidance to patients and families concerning treatment preferences and end-of-life decision making. It is meant to provide information to guide the nurse in vigilant advocacy for patients throughout their lifespan as they consider end-of-life choices, and includes discussion of personal ethical dilemmas that can occur when caring for the dying.” (ANA, 2014)), http://www.nursingworld.org/ The Goal of Palliative Nursing “The goal of hospice and palliative care nursing “is to promote and improve the patient’s quality of life through the relief of suffering along the course of illness, through the death of the patient, and into the bereavement period of the family” (ANA & HPNA, 2007, p.1). WHO Definition of Palliative Care Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. World Health Organization. (2014). WHO definition of palliative care. Retrieved from World Health Organization: http://www.who.int/cancer/palliative/definition/en/ WHO Definition of Palliative Care Palliative care: provides relief from pain and other distressing symptoms; affirms life and regards dying as a normal process; intends neither to hasten or postpone death; integrates the psychological and spiritual aspects of patient care; offers a support system to help patients live as actively as possible until death; World Health Organization. (2014). WHO definition of palliative care. Retrieved from World Health Organization: http://www.who.int/cancer/palliative/definition/en/ WHO Definition of Palliative Care Palliative care: offers a support system to help the family cope during the patients illness and in their own bereavement; uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated; will enhance quality of life, and may also positively influence the course of illness; is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications. World Health Organization. (2014). WHO definition of palliative care. Retrieved from World Health Organization: http://www.who.int/cancer/palliative/definition/en/ The Beginning Manifestations For all patients entering the end stages of disease and those with chronic comorbidities Failure to Thrive Malnutrition is the key pathophysiological finding Institute of Medicine – weight loss of more than 5%, decreased appetite, poor nutrition, physical inactivity Malnutrition manifests as: weight loss, loss of functional skills and psychological decline Ali, MD, N. (2012). Failure to thrive in elderly adults. Medscape Reference. Common Medical Conditions Associated with Failure to Thrive Cancer: metastases Chronic lung disease; respiratory failure Chronic renal failure; insufficiency Depression; psychosis, other psychiatric disorders Hip or large bone fractures; functional impairment Inflammatory bowel disease; malnutrition, malabsorption MI, CHF, heart failure Recurrent & chronic infections; UTI, pneumonia Stroke: dysphagia, cognitive loss Ali, MD, N. (2012). Failure to thrive in elderly adults. Medscape Reference. Failure to Thrive Etiology “The Dwindles” Diseases (medical illness) Delirium Dementia Drinking alcohol; substance abuse Drugs - medications Deafness, blindness, other sensory deficits Dysphagia Depression Desertion Destitution Despair Ali, MD, N. (2012). Failure to thrive in elderly adults. Medscape Reference. The Six Phases of Dying Dying is a process (3-6 months) All patients behave the same way Eating -- tasting -- looking at food Sleep wake cycle reverses Decreased functional ability Increased assistance with ADL’s www.hospiceofmarion.com Terminal Stage Signs (last 2-3 months) Beyond cure or rehab Progressive illness Anorexia/Cachexia (wasting) Syndrome Progressive weakness Increasing debility/dependence Declining condition Psychosocial & spiritual needs Family in crisis www.hospiceofmarion.com Pre-active Stage Signs (lasts 2-3 weeks) Little oral intake Increasing breathlessness Rising heart rate Reversal of sleep-wake cycle Delirium Restlessness Fluctuating level of consciousness Spiritual events – “visits” from those already passed/angels www.hospiceofmarion.com Imminent Death Syndrome (days-hours) Decreased responsiveness/consciousness Decreased intake of food/water Decreased urine output Skin color and temperature decrease Mottling Decreased heart rate and blood pressure fluctuations Swallowing dysfunction Breathing changes/apnea Restlessness Gaze as if through you www.hospiceofmarion.com Agonal Stage Signs (last 2-3 hours) Stupor or coma Tachypnea Cheyne-Stokes/agonal pattern Imperceptible radial pulses (last 4-6 hours) Tachycardia or bradycardia Pupils dilated, fixed (last 15-30 minutes) www.hospiceofmarion.com Death Event (last 2-3 moments) Spiritual experiences (moment of death) Bolt upright as if seeing; smiling Epiphora (final tear) Bright reflection Sense of calm (end of suffering/reunion) www.hospiceofmarion.com Symptom Management Symptoms associated with end-of-life and their management Medication Dosing Rule of Thumb Most medications start on the PRN bases Assess pain and anxiety frequently using the numeric pain scale (you can adapt the pain scale for anxiety when the patient is alert) If you have to dose a patient four consecutive times with PRN medications notify the MD/NP as soon as possible for medication adjustment (either increasing the dose, initiating routine, or increasing the frequency of administration) The above applies to respiratory distress and excess secretion control medications such as Robinol Medication Dosing Rule of Thumb Initial end-of-life medications will start out PO/SL. When the patient is no longer able to swallow switch medications to the subcutaneous route Subcutaneous (SQ) medications are more effective, ensures all medication is administered (not draining out of the mouth) and absorbs within ten minutes ensuring fast metabolism for effective symptom management When using the SQ route ensure flushing with 0.3 ml NS after medication administration and no more than 2ml (flush included) to each SQ port (might require more than 1 site) Pain Management Pain Management Top priority Initially assess pain with numeric pain intensity scale As patient progresses use the behavioral pain scale Most common medications morphine and hydromorphone Manage acute breakthrough pain Initiate bowel regimine for side effect management of constipation D'Arcy, MS, CRNP, CNS, Y. (2012). Managing end-of-life symptoms. American Nurse Today, 7(7), 22-27. Pain Medication Recommendations Medication Dose (Starting doses age >70) Route Morphine-Roxanol Tabs: 15mg or 30mg Oral Solution: 10mg/5ml, 20mg/5ml, and 100mg/5ml PO/SL Morphine Sulfate Injection 0.5mg (5mg/ml) 1 hour dose limit 4-6mg SQ Hydromorphone-Dilaudid Tabs: 2, 4, 8mg Oral Solution: 5mg/5ml PO/SL Hydromorphone-Dilaudid Injection 0.1mg (1mg/ml) 1 hour dose limit 0.4 – 0.6mg SQ Oxycodone-OxyFAST 20mg/ml PO/SL University of Pittsburg. (2013, July). Palliative care symptom guide. Retrieved from Pain Card: https://www.dom.pitt.edu/dgim/spc/downloads/paincard2013.pdf Pain Scales: Wong-Baker Google Images (2014) Behavioral Pain Scale (BPS) Google Images (2014) Anxiety Anxiety An expected finding Etiology: Chronic mental health disorders – Generalized anxiety disorder Chronic use of antianxiety medications Fear of the unknown Spiritual distress Fear of dying, dying alone Dyspnea Worry over family and unresolved life issues Adapt the pain scales (see previous slides) for level of anxiety Anxiety Medication Recommendations Medications Dose Route Diazepam – Valium Tab: 5 and 10 mg Oral Solution: 2mg/5ml Injection: 5mg/ml Rectal Solution: 2.5, 5 and 10 mg PO/SL/SQ/PR Lorazepam – Ativan Tabs: 0.25, 0.5, 1 and 2.5 mg Injection: 2mg/ml PO/SL/SQ (IAHPC), I. A. (2013, January). WHO-Essential Medicines in Palliative Care. Retrieved from World Health Organization: http://www.who.int/selection_medicines/committees/expert/19/applications/PalliativeCare_8_A_R.pdf Terminal Restlessness/Agitation Definition: Terminal restlessness is a syndrome observed in patients in their last days of life. It is a variant of delirium and refers to a spectrum of signs of central nervous system irritability that may include restlessness, agitation, distressed vocalizing, twitching, myoclonic jerking or recurrent fitting (Binns, 2014) Patients that are too week to stand but insist on getting up Uncomfortable even with adequate pain management Yelling and calling out Extremely agitated Hallucinations Psychotic episodes Paranoia Hospice Patients Alliance. (2014). Terminal restlessness or agitation. Hospice patients alliance. Determining the Cause Oliguria – bladder distention (end-of-life catheter placement might be required) Assess pain Oxygenation Repositioning Constipation Infection Metabolic changes Emotional distress; spiritual assessment of needs New medications Pre-active phase of death Hospice Patients Alliance. (2014). Terminal restlessness or agitation. Hospice patients alliance. Terminal Restlessness and agitation Medication Recommendations Medication Dose Route Haloperidol – Haldol® Tabs: 0.5, 1, 2, 5, 10 mg. Available in oral and injectable solutions PO/SL/SQ Risperidone - Resperdal® Tabs: 0.25, 0.5, 1, 2, 3, or 4 mg PO Olanzapine - Zyprexa® Tabs: 2.5, 5, 7.5, 10, 15 & 20 mg PO/IM Quetiapine - Seroquel® Tabs: 25, 50, 100-400 mg PO University of Pittsburg. (2013, July). Palliative care symptom guide. Retrieved from Pain Card: https://www.dom.pitt.edu/dgim/spc/downloads/paincard2013.pdf Dyspnea Shortness of air Dyspnea Recommendations Dyspnea is managed with opioid medications. Start with a loading dose Repeat loading dose bolus hourly until well controlled Adjust medications as needed Reposition Initiate O2 if required Treat cause of dyspnea, i.e. anxiety, and or pain. D'Arcy, MS, CRNP, CNS, Y. (2012). Managing end-of-life symptoms. American Nurse Today, 7(7), 22-27. Weakness & Fatigue Weakness and fatigue A common occurrence with palliative patients Sometimes diet can assist in converting fat to energy Let the patient decide on activity level Encourage frequent rest periods Can assist patient in cope with suffering D'Arcy, MS, CRNP, CNS, Y. (2012). Managing end-of-life symptoms. American Nurse Today, 7(7), 22-27. Constipation Constipation Most distressing symptom Expected with use of opioids Bowel regimen should always be in place with opioid use Signs and symptoms: abdominal cramps, nausea and vomiting, continued urge to defecate Poor oral intake increases risk for dehydration and constipation D'Arcy, MS, CRNP, CNS, Y. (2012). Managing end-of-life symptoms. American Nurse Today, 7(7), 22-27. Constipation Medication Recommendations Medication Dose Route Senna 1-2 tabs daily or BID PO Docusate 100mg daily or BID PO Bisacodyl Tabs: 5-15 mg daily or BID 10 mg suppository PR PO/PR Milk of Magnesium 30 ml daily or BID PO Miralax 17 g in 8 oz water daily PO Lactulos 15-30 ml daily or BID PO University of Pittsburg. (2013, July). Palliative care symptom guide. Retrieved from Pain Card: https://www.dom.pitt.edu/dgim/spc/downloads/paincard2013.pdf Secretion Control Recovery position Poor Secretion Control A result of type 1 or type 2 excessive secretions Type 1: Oral secretions of the mouth Type 2: Bronchial secretions Death Rattle – air moving over secretions in the airway Suctioning is not recommended: Causes discomfort and distress Leads to agitation Increases secretion production Positioning (see recovery position) Robinul does not cross blood brain barrier which reduces occurrence of CNS stimulus D'Arcy, MS, CRNP, CNS, Y. (2012). Managing end-of-life symptoms. American Nurse Today, 7(7), 22-27. Secretion Control Medication Recommendations Medication Dose Route Robinul Tabs: 1mg Injection: 0.2 mg/ml PO/SL/SQ Atropine Sublingual: 1 gtt Injection: 0.1 mg SL/SQ Scopolamine 1mg Transdermal Levsin Tabs/Drops: 0.125mg PO University of Pittsburg. (2013, July). Palliative care symptom guide. Retrieved from Pain Card: https://www.dom.pitt.edu/dgim/spc/downloads/paincard2013.pdf The Recovery Position Google Images, (2014) The Recovery Position Placing a patient in the recovery position will help to relieve dyspnea Uses gravity to facilitate drainage of excessive secretions built up in the lungs and esophagus Relieves pressure on bony prominences Reduces the need to turn the patient frequently which disrupts comfort in the later phases of death and can cause severe pain Caution: Some patients with certain medical conditions such as COPD may not tolerate this position Place a pillow under the accessible arm, between legs, and under feet Remove all pillows from under the head and place a towel with a pillow case on it under the cheek touching the mattress Teach family what to expect (excessive odorous secretions requiring frequent oral care) Do not use Yonkers with bedside suction Nausea & Vomiting Nausea and vomiting May develop early Etiology of pharmacological therapy – chemotherapy May lead to dehydration Leads to anorexia Causes discomfort Increases anxiety Nausea & Vomiting Medication Recommendations Medication Dose Route Haloperidol – Haldol 0.5 – 4 mg PO/SL/SQ Ondansetron – Zofran 4-8 mg PO Scopolamine 1.5 mg Transdermal Metoclopramide – Reglan 5-20 mg PO/SQ University of Pittsburg. (2013, July). Palliative care symptom guide. Retrieved from Pain Card: https://www.dom.pitt.edu/dgim/spc/downloads/paincard2013.pdf Nutritional Problems Nutritional Problems Little oral intake – reduction of caloric intake to support physiological needs Nutritional needs decrease with progression of dying phases Traumatic to family members – does not bother the patient Offer soft foods and/or favorite foods – patient may request favorite foods Hunger is suppressed due to the body no longer requiring nutrition Provide support and education to the family D'Arcy, MS, CRNP, CNS, Y. (2012). Managing end-of-life symptoms. American Nurse Today, 7(7), 22-27. Vital Signs Vital Signs Blood pressure and oxygenation decrease in imminent stage of dying Unreliable in the indication of impending death Research does not support obtaining vital signs Febrile conditions are a natural process of the dying phase Can treat with Tylenol PO/PR – only if fever is causing distress to the patient Administering antipyretics for elevated temperatures can cause distress, discomfort, and increased agitation in patients that do not appear to be effected by the febrile state Obtaining respirations and heart rate can help to determine increased pain, anxiety, and dyspnea to guide PRN medication administration Bruera, S., Chisholm, G., Santos, R., Crovador, C., Bruera, E., & Hui, D. (2014, April 14). Variations in vital signs in the last days of life in patients with advanced cancer. Journal of pain syptom management(14), S0885-3924. doi: doi: 10.1016/j.jpainsymman.2013.10.019 Family Support & Education Therapeutic Self Family Support and Education Ensure the patients right to make informed decisions about their end of life care Cultural assessment and provision of needed cultural requirements Ensure appropriate referrals, social services, pastoral, Hosparus etc. Providing education at the beginning and throughout the process can reduce stress and increase comfort for the patient and family Continued education to support the family establishes trust Empower the family through education to foster feelings of control – teaching oral care, cool cloths, feeding (when the patient is still able to swallow) Nutritional education – oral intake of foods and fluids Encourage family and patients to ask questions Educate family on signs and symptoms of pain, dyspnea, and anxiety Educate that at times visitor restriction may be necessary to reduce patient anxiety, agitation, and restlessness Educate on safety – during terminal restlessness phases References (IAHPC), I. A. (2013, January). WHO-Essential Medicines in Palliative Care. Retrieved from World Health Organization: http://www.who.int/selection_medicines/committees/expert/19/applications/PalliativeCar e_8_A_R.pdf Ali, MD, N. (2012). Failure to thrive in elderly adults. Medscape Reference. American Nurses Association. (2010, June 14). Registered Nurses Roles and Responsibilities in Providing Expert Care and Counseling at the End of Life. Retrieved from Position Statement: http://www.nursingworld.org/mainmenucategories/ethicsstandards/ethicsposition-statements/etpain14426.pdf Bruera, S., Chisholm, G., Santos, R., Crovador, C., Bruera, E., & Hui, D. (2014, April 14). Variations in vital signs in the last days of life in patients with advanced cancer. Journal of pain syptom management(14), S0885-3924. doi: doi: 10.1016/j.jpainsymman.2013.10.019 D'Arcy, MS, CRNP, CNS, Y. (2012). Managing end-of-life symptoms. American Nurse Today, 7(7), 22-27. Hospice Patients Alliance. (2014). Terminal restlessness or agitation. Hospice patients alliance. University of Pittsburg. (2013, July). Palliative care symptom guide. Retrieved from Pain Card: https://www.dom.pitt.edu/dgim/spc/downloads/paincard2013.pdf World Health Organization. (2014). WHO definition of palliative care. Retrieved from World Health Organization: http://www.who.int/cancer/palliative/definition/en/