PAIN

Patient-Centered Care in Palliative and End-of-Life (EOL) Care Carla Hunt, RN, BSN

To live in hearts we leave behind is not to die Thomas CampbellRealities of Care Rapidly aging U.S. population Medical care has limitations and inappropriate use of advanced technology to prolong life when death is inevitable (Peaceful Death: Recommended Competencies and Curricular Guidelines for End-of-Life Care, 1997).Exorbitant expense is associated with futile care 2.5 million U.S. deaths have been negotiated annually while life-extending/sustaining measures were provided (Tilden & Thompson, 2009).

Palliative CareIntends to improve the quality of life for patients and families faced with life-limiting illness (World Health Organization, 2012).Provides support in chronic illness: cardiac (CHF), pulmonary (COPD), renal disease, cancer, immune suppression, HIV/AIDS , dementia, traumatic injury (McLean-Heitkemper, 2011). Care or treatment that reduces or controls symptoms instead of seeking cure or efforts to delay death.

Palliative CareBegins after the patient receives the diagnosis of life-limiting illness.Goals:Prevent and relieve patient suffering Improve quality of life Timeframe includes hospice, end-of-life, and bereavement.Generally precedes hospice.Hospice philosophies are the foundation of palliative care.

McLean-Heitkemper, 2011 4HospiceHolistic, compassionate care for the dying and their family during terminal illness. Hospice Medicare eligibility requires a prognosis of less than six months life expectancy. Provides supportive care for patients in the last phase of incurable disease. Palliative focus instead of curative.Preserves dignity and quality of life throughout the dying process.Focuses on symptom management, advanced care planning, spiritual care, family support, and bereavement.

McLean-Heitkemper 2011 HospiceAddresses physical, emotional, social, and spiritual needs of patients and families.Collaborative and coordinated care via interdisciplinary team members. Care team includes: physicians, pharmacist, nurses, nursing assistants, chaplain, volunteers, social worker, and bereavement coordinator.Services offered in the home, hospital, residential care center, and nursing home.

McLean-Heitkemper 2011 End-of-LifeGenerally refers to care in the final phase of illness when the patient is near death or actively dying.EOL care may be a few hours, weeks, or months .The timeframe from diagnosis to death varies by diagnosis and disease extensiveness. Institute of Medicine considers EOL as the time of coping with terminal illness or advanced age even if death is not clearly imminent. McLean-Heitkemper, 2011Goals of EOL CareComfort and supportive care for the patient and family during the dying process. Improved quality of life for the life that remains. Dignified and peaceful death.Emotional support for both patient and family.McLean-Heitkemper, 2011 8Consider for a moment..How would your life change if you learned you would die in the next 12 months, six months, or one month? (Sherman, Matzo, Panke, Grant, Rhome , 2003)What would you want to do if you were diagnosed with a terminal condition?How would you need to do to prepare? Never loose sight of how very personal this is for the patient and family!When will death occur?Prognosis is influenced by disease, desire to live, and sometimes anticipation of special events (Sherman, Matzo, Pitorak, Ferrlll, Malloy, 2005).Not all patients experience the same symptoms as there is no specific sequence (McLean-Heitkemper , 2011). Death results when all vital organ function stops (cardiac, respiratory, and brain). Over a 6 month interval, the patient may go from being coherent and fully independent to bedrest, total care, and aggressive symptom management in the final month of life.

10Brain DeathNo brain or brainstem function. Cerebral cortex no longer functions or is irreversibly damaged. Clinical brain death in the ICUheart continues to beat (intubation with mechanical ventilation).Legal definitionbrain function must cease for brain death to be pronounced and life support removed.

McLean-Heitkemper 2011 Death Draws Near: Physical ManifestationsSlowed metabolism and impaired organ function that leads to multi-system failure and organ shut-down. Respirations are usually the first to stop.Heart usually stops within a few minutes of respirations.McLean-Heitkemper 2011 Death Draws Near: Physical Manifestations cont.Sensory: Decreased sensationDecreased ability to perceive pain and touch Poor sense of taste and smellEyes: blurred vision, absent blink reflex, sunken, glazed over, blank stare, slit eye lidsLoss of hearing (last sense to loose)Inability to respond

McLean-Heitkemper, 2011 Death Draws Near: Physical Manifestations cont.Respiratory: (distress and air hunger common)Rapid, slow, shallow, irregular breathing Cheyne-Stokes respirations (alternating apnea and deep, rapid respirations)Slowed respirations terminal gasps or guppy breathsUnable to cough and clear secretionsNoisy, gurgling secretions audible without a stethoscope, death rattleMcLean-Heitkemper, 2011 14Death Draws Near: Physical ManifestationsCardiovascular:Increased heart rate that begins to slowWeak or absent pulses Progressive decrease in blood pressure Delayed absorption of injected medications Irregular rhythm McLean-Heitkemper 2011 Death Draws Near: Physical Manifestations cont.Urinary:Decreasing output IncontinentInability to voidGastrointestinal:Decreased motility and peristalsisAbdominal distention, nausea, and constipationLoss of sphincter control makes incontinence common as death occurs.

McLean-Heitkemper 2011 Death Draws Near: Physical Manifestations cont.Musculoskeletal:Severe weakness and inability to move Relaxed facial tonejaw drop, difficulty/inability to speak and/or swallowPoor body posturing and alignmentImpaired gag reflexMyoclonus (involuntary jerking commonly seen with high-dose opioids)McLean-Heitkemper 2011 Death Draws Near: Physical Manifestations cont.Integumentary:Cold, clammy, diaphoretic, feverCyanosis of nose, nail beds, ears Mottling of hands, feet, toes, arms, legs, and kneesSkin may have wax-like appearance

McLean-Heitkemper 2011 Death Draws Near: Psychosocial Manifestations cont.Conflicting decisionsAnxiety regarding things left undoneFeelings of meaningless life contributionsFear of pain or shortness of breathLoneliness HelplessnessDepressionMcLean-Heitkemper 2011 Death Draws Near: Psychosocial Manifestations cont.Anticipatory grievingDifficulty saying goodbyeReminiscent of lifes events Fear of loss of independence and functional declineRecognized condition deterioration that patient correlates with approaching death RestlessnessInability to understand communication McLean-Heitkemper 2011 Story telling is a powerful tool . Encourage to talk about: places they have lived, favorite things to do together, hopes and dreams, great vacations, what will be missed the most, the funniest times theyve had together. 20Confusion-Disorientation-DeliriumManagementDetermine etiologyDisease progression, fever, nearing death awareness, opioid effects, full bladder , hypoxia, metabolic imbalances, toxin accumulation due to liver or renal failure.ManagementAssess cause and treat, safety precautions, administer sedatives, speak truthfully regarding condition, provide spiritual and emotional support, assess for caregiver fatigue.

McLean-Heitkemper 2011; Sherman et al., 2005

Dyspnea ManagementPharmacologicNonpharmacologicOpioids (morphine)Bronchodilators (albuterol)Diuretics (furosemide)Benzodiazpines (lorazepam; alprazolam)Anxiolytics (buspirone)Steriods (dexametasone, Solu-Medrol)Antibiotics

Oxygen if hypoxicFan for air circulation, cool room temperaturePositioning, elevate head of beadSuctioning

Sherman et al., 2004Gastrointestinal ManagementNauseaAntiemeticsNG if obstructedConstipationStimulant (Senna)Bulk laxatives (Metamucil)Warm fluids (prune juice)DiarrheaOpioids (Loperamide hydrochloride)Bulk forming agents Somatostatin (Sandostatin)

Sherman et al., 2004 Fatigue-Weakness ManagementIncreased weaknessInterventions include:Assist with ADLsBedrestROM, turning, positioning, and skin assessment.Alter medication routesleast invasive and most effectiveAspiration precautions Suction McLean-Heitkemper 2011; Sherman et al., 2004; Sherman et al., 2005 Pain ManagementPatients fear that they will die in painScheduled analgesia for pain control (long/short acting)Inability to swallowconsider alternate administration routes Interventionsmassage, reposition, bracing/splintingAlternative/ complimentary therapiesUse standardized tools for pain assessmentMcLean-Heitkemper 2011; Sherman et al., 2004 Comfort Care:Actively DyingSimple patient directionsOral caresips of fluid, mouth care, lip moisturizerPreventive skin caremanage incontinence, skin barriers.Medications to alleviate respiratory congestion, agitation, pain, and dyspnea.Antiemetics for discomfort associated with nausea and vomiting.

Sherman et al., 2005Care of the SpiritMay or may not mean religionSpiritual support provides strength and decreases despair at EOLPray with patient and family Involve pastoral servicesRecognize spiritual diversity and ritualistic EOL practices

McLean-Heitkemper 2011 Emotional SupportProvide hope, comfort, and peacefulness (Matzo, Sherman, Sheehan, Ferrell, & Penn, 2003).Reassure the patient you will not abandon themAsk yourself, What would I do if this were my family member?Provide realistic and honest informationPrepare for emotional decline and cognitive changes Empathetic and compassionate care (McLean-Heitkemper, 2011) Encourage sharing of life stories, memories, and life contributionsLive your life until you die (Cramer, 2010).

CommunicationCommunication is 7% verbal, 38% tone, and 55% body language (Cramer, 2010)Be present, use eye contact and touch, sit at the bedside, listen more than you talk. Communicate with open acceptance (McLean-Heitkemper, 2011)Create an environment that feels safe to share feelings and express emotion. Silence is ok.Nearing death awareness:Patient may see or talk with a loved ones that have diedPatient may provide instructions for those left behind

Response to LossGrief is normal, healthy process of reacting to loss and adapting to change.Bereavement is the time after death when grief and mourning occurFactors that influence grief: Personal characteristicsRelationship with the deceasedLife stressorsCoping resourcesSupport systemsOften begins prior to deathPowerful, affects all aspects of ones lifeNurse may be the recipient of anger. Do not react or take it personal. McLean-Heitkemper 2011; Sherman et al., 2003 Grief/Bereavement: Response to lossPoor concentration, persistent sadness, constant thoughts of the one who diedGuilt, anger, abnormal behaviorWeight loss, poor appetiteDifficulty sleeping, palpitationsAnxiety, fear, loneliness, hopelessness, powerlessness

McLean-Heitkemper 2011Legal and Ethical Principles in Complex EOL Care Care determined by the patients wishes (McLean-Heitkemper ,2011) Organ and tissue donationsAdvance directivesMedical power of attorney or living willsResuscitation The nurse must recognize how her/his personal beliefs, values, and expectations influence EOL care (Matzo et al., 2003).Fear of death, lack of experience , not knowing what to say, unresolved grief, and disagreement with patient wishesA nurse has an ethical responsibility to ensure everything possible is done to provide a peaceful death.Organ and Tissue DonationAny part of the entire body may be donatedDecision may be made prior to death but family must consent at time of donationUsually retrieved within a few hours after deathDesignated requestors at every hospitalMcLean-Heitkemper 2011 33Legal Documents: Protect the Patients WishesAdvance directivesWritten statements of medical care wishesSometimes called a living willDirective to physiciansPatients desire to accept or deny treatment Durable power of attorney for health careLists the person to make health care decisions should a patient become unable to make informed decisions for self

McLean-Heitkemper 2011 34Common Legal Documents Do not resuscitate (DNR)Orders instructing health care providers not to perform CPROften requested by familyMust be signed by a physician to be validPurple bracelet placed on clientPush to change the term to allow natural death (AND) to more clearly describe what occursMcLean-Heitkemper 201135Ethical IssuesBeneficenceTo do good without causing harm.Give effective amounts of timely pain medication.Failure to give effective pain medication and adequate dosing neglects the principles of beneficence. NonmaleficenceTo do no harm. To refrain from causing harm.Effective pain control that alleviates suffering in the terminally ill.Under treatment of pain may be more harmful than the presumed harmful side effects.Secondary effects that may hasten death are ethically justified.

Bernhofer, 2011 36Administering pain medication needs to be ethical, unbiased, and evidence based.

Postmortem CareAfter patient is pronounced dead the nurse prepares or delegates preparation of the bodyIf death is in a semi-private roommove the other patient outConsiderations when preparing body:Cultural and ritualistic practices Adherence to policies and proceduresClose the patients eyesReplace denturesWash the body as neededRemove tubes and dressingsStraighten the bodyLeave a pillow in place to support the head

McLean-Heitkemper 2011 37Postmortem Care Immediate family viewing and saying final goodbyeFamily should be allowed privacy and as much time as needed with the deceased loved oneBody may stay on the unit 2 hours

McLean-Heitkemper 2011 38Special Needs of the Nurse Recognize what can and cannot be controlledIt is appropriate to cry with the patient and family during the grieving processCare for the dying is emotionally challenging for everyone involvedIt is common for nurse to feel helpless and powerlessFeelings of sorrow, guilt, and frustration need to be expressedMcLean-Heitkemper 2011 39Nurses rank communication about death and dying as one of the greatest practice needs (Nevidjon & Mayer, 2012)

Nursing Management Nursing Diagnoses: Psychosocial

Acute/ chronic confusionCompromised family copingDeath anxietyDisturbed thought processesSpiritual distressIneffective denialInterrupted family processesInsomnia

Nursing Management Nursing Diagnoses: PsychosocialFearGrievingHopelessnessImpaired religiosityImpaired social interactionImpaired verbal communicationIneffective copingReadiness for enhanced spiritual well-being Risk for lonelinessSocial isolationNursing Management Nursing Diagnoses: PhysicalAcute/ chronic painBowel incontinenceConstipationDecreased cardiac outputDiarrheaImpaired tissue integrityImpaired urinary eliminationIneffective airway clearanceImpaired physical mobilityNursing Management Nursing Diagnoses: PhysicalFatigueImbalanced nutrition: less than body requirementsImpaired bed mobilityImpaired comfortImpaired gas exchangeImpaired oral mucous membraneImpaired skin integrityImpaired swallowingNursing Management Nursing Diagnoses: PhysicalIneffective breathing patternIneffective thermoregulationIneffective tissue perfusionNauseaRisk for aspirationRisk for infectionRisk for injurySelf-care deficitTotal urinary incontinenceResourcesAmerican Cancer Society (http:/www.cancer.org)National Hospice and Palliative Care Organization (http://www.nhpco.org)Hospice and Palliative Nurses Association (http://www.hpna.org)Oncology nursing Society (http://ons.org)Journal of Supportive oncology: Quality of Life/Symptom Management/Palliative care (http://www.supportiveoncology.net)End of Life Nursing Education Consortium From the American Association of College of Nursing (http://www.aacn.nche.edu/elnec/curriculum.htm)ReferencesAckley, B.J. & Ladwig, G.B. (9th ed). Nursing diagnosis handbook: An evidence-based guide to planning care. Mosby.American Association of Colleges of Nursing. (2004). Peaceful death: Recommended competencies and curricular guidelines for end-of-life nursing care. Retrieved fromhttp://www.aacn.nche.edu/Publications/deathfin.htm Bernhofer, E. (2011). Ethics: Ethics and pain management in hospitalized patients. The Online Journal of Issues in Nursing, 17(1). doi: 10.3912/OJN.Vol17No01EthCol01Cramer, C. F. (2010). To live until you die: Quality of life at the end of life. Clinical Journal of Oncology Nursing, 14(1), 53-56. doi: 10.1188/10.CJON.53-56Matzo, M. L., Sherman, D. W., Lo, K., Egan, K. A., Grant, M., & Rhome, A. (2003). Strategies for teaching loss, grief, and bereavement. Nurse Educator, 28(2), 71-76. doi: 10.1097/00006223-200303000-00009Matzo, M. L., Sherman, D. W., Nelson-Marten, P., Rhome, A., & Grant, M. (2004). Ethical and legal issues in end-of-life care: content of the End-of-life Nursing Education Consortium Curriculum and teaching strategies. Journal for Nurse in Staff Development, 20(2), 59-66. doi: 10.1097/00124645-20040300-00001ReferencesMcLean-Heitkemper, M. (2011). Palliative care at the end-of-life. In S. L. Lewis, S. Ruff-Dirksen, M. McLean-Heitkemper, L. Bucher, & I. M. Camera (Eds.), Medical-surgical nursing: Assessment and management of clinical problems (pp. 153-166). St. Louis, MO: Mosby.Sherman, D. W., Matzo, M. L., Coyne, P., Ferrell, B. R., & Penn, B. K. (2004). Teaching symptom management in end-of-life care: The didactic content and teaching strategies based on the End-of-Life Nursing Education Curriculum. Journal for Nurses in Staff Development, 20(3), 103-115. doi: 10.1097/00124645-200405000-00001Sherman, D. W., Matzo, M. L., Panke, J., Grant, M., & Rhome, A. (2003). End-of-Life Nursing Education Consortium Curriculum: An introduction to palliative care. Nurse Educator, 28(3), 111-120. doi: 10.1097/00006223-200305000-00004Sherman, D. W., Matzo, M. L., Pitorak, E., Ferrell, B. R., & Malloy, P. (2005). Preparation and care at the time of death: Content of the ELNEC Curriculum and teaching strategies. Journal for Nurses in Staff Development, 21(3), 93-100. doi: 10.1097/00124645-200505000-00003Tilden, V. P., & Thompson, S. (2009). Policy issues in end-of-life care. Journal of Professional Nursing, 25(6), 363-368. doi: 10.1016/j.profnurs.2009.08.005World Health Organization. (2012). http://www.who.int/cancer/palliative/en/