End of Life Care

End of Life Care in the ICU Introduction 29, 000 people die in Ireland each year 67% would prefer to die at home 43% die in acute hospital 20% of hospital deaths occur in the ICU 28% of our ICU admissions died 2015 For every 1 person who dies, 10 people are directly bereaved. Definition of Death An individual who has sustained either • Irreversible cessation of circulatory and respiratory functions, or • Irreversible cessation of all functions of the entire brain, including the brain stem. Risk of death “Because of the support he received, my husband died well. Because he died well, I live well” Bereaved family member, Forum on End of Life 2013 Type of death in ICU • After an initial successful resuscitation • End stage chronic disease • New diagnosis of life limiting condition • Sudden • Traumatic • Brain stem death Objective To discuss relevant literature which addresses the experience of family members when • Preparing for a death in the ICU • During the dying process in a clinically advanced environment • Bereavement after a death in the ICU and relating this to our practice. Search Strategy Using CINAHL Plus Database, following terms were entered: “death”, “dying”, “palliative care”, “end of life care”, “relatives”, “families”, “experiences”, “critical care”, “intensive care”, “withdrawing treatment” and “withholding treatment”. Results were limited to last 8 years & in the English language. Preparing for Death Begins with communication of a poor prognosis • This can be delayed as clinicians allow time for the patient to respond to treatment and interpret results. Although concern can be expressed. • Identify key family members • Arrange for quiet environment • Clear, concise, honest, empathetic • Allow time for questions • Be available to follow up again • Identify an expected time-line Brain Death • Death due to the irreversible cessation of brainstem function. • When assessing for clinical diagnosis of brain death in a comatose patient, the following principles are essential: • establishing the cause of coma, • ascertaining irreversibility, • excluding major confounders and accurately testing all possible brainstem reflexes Withholding vs Withdrawing Plans can be made to withhold or withdraw treatment • Withholding signifies that no further interventions will be added as they would not change the patient outcome eg. addition of renal replacement therapy. • Withdrawal indicates the removal of current treatments would be discontinued eg. Inotropic or ventilator support Mr. X 69 y/o Male Hx: Hypertension, Epilepsy. HPI: Fall at home 3 days previously, increase in seizures, now found at bottom of stairs unarousable. BIBA, GCS 3/15, pupils fixed & dilated. CT Brain: Subarachnoid Haemorrhage, Subdural Haemorrhage, Uncal herniation MRI Brain: large temporal haemorrhagic contusions, microhemorrhages indicative of DAI, large left occipital lobe infarct. Family: One daughter and son-in-law Mr. X – importance of communication • 6 days for information to be processed and accepted • Decision of treatment is medical decision, with family opinions considered – there should be no burden of decision making placed on family members • Involve all disciplines- Intensivists/Neurosurgery/Palliative Care • If treatment is withdrawn, care will continue • Importance of language • Try to meet family requests The Dying Process Timing – Needs an individualised approach • Withdrawing treatments too fast does not allow families to be prepared • Withdrawing too slow can be prolonged and cause families to be concerned of undue discomfort to the patient Remove unnecessary equipment Adjust alarm limits & move to “visitors” screen Ensure patient comfort with adequate analgesia & sedation The Dying Process • Visiting • Allow unrestricted access for family members • Accommodate for vigil • Allow for privacy with the patient • Ensure the patient looks as normal as possible • Continue to update family on any changes • Advise colleagues that someone is dying Mr. Y 35 y/o male Polytrauma post high speed motor cycle accident CT Brain: DAI, midbrain lesion indicative of high velocity intracranial injury. CT Thorax: T4 vertebral fracture CT Abdo: Right femoral artery laceration Open pelvic fracture, right femur fracture, right tibial/fibular fracture Perineal degloving injury Mr. Y • Unrecognisable • Harsh metallic smell • Obvious external fixator Increased Risk of PTSD after death in ICU McAdam et al. (2012) measured traumatic stress in 41 families in 3 ICUS. • 22 item validated questionnaire: The Impact of Event Scale • Levels of anxiety and depression decreased over a 3 month period, although they remained above the cut-off This is thought to be linked to families involvement in decision making at end of life, and having lasting feelings of guilt and worry if the right decision was made. Follow up meetings or phonecalls to discuss the death, and answer any further questions are considered to be beneficial. After Death Intensity of Bereavement • Treatment and care surrounding the death, affects how families grieve. • Bereavement from unexpected deaths affect families ability to cope and grieve. • Sudden deaths of a spouse/partner can be devastating as there is often a simultaneous disruption to living arrangements, child care and financial security. Intensity of Bereavement • 78 participants in 5 centres • Nature of death questionnaire @ 2weeks • Core Bereavement Items Questionnaire @ 3 & 6 months • Bereavement intensity shown to be increased when unprepared for the death, drawn out death, violent death and if the deceased appeared to suffer more than expected. • Coping response improved from 3 to 6 months, along with acceptance. Care After Death • Some families reported wishing to participate in caring for their relative after death • Allow time for families to say goodbye • New initiative- sending bereavement cards to families after death in the ICU • Book of condolence for long term patient- allowed staff also to extend their sympathies Red Forms • Formal documentation of resuscitation wishes • Treatment escalation plan • Clear record of communication • Valid for that hospital admission only • Can be reviewed at any time End of Life Care Group • Complete “Final Journeys” Training • Focus on EoL Care • Keep resources up-to-date • Support staff • Mindful of the needs of family • Remembrance week – focus week • Hospital Service • Bereavement Cards Keep sakes Minding yourself • Prepare yourself • Be aware of your limitations • Debrief • Take a break • What is available in the hospital? • Be kind you yourself (and others!) References • Abbott, K., Sago, J., Breen, C., Abernethy, A. and Tulsky, J. (2001) “Families looking back: One year after discussion of withdrawal or withholding of life-sustaining support”, Critical Care Medicine, 29 (1), pp197-201. • Buckley, T., Spinaze, M., Bartrop, R., McKinley, S., Whitfield, V., Havyatt, J., Roche, D., Fethney, J. and Tofler, G. (2015) “The nature of death, coping response and intensity of bereavement following death in the critical care environment”, Australian Critical Care 28 (2), pp64-70. • Coombs, M., Parker, R., Ranse, K., Endacott, R. and Bloomer, M. (2016), “An integrative review of how families are prepared for, and supported during withdrawal of life-sustaining treatment in intensive care”, American Journal of Critical Care, 73 (1), pp39-55. • Gutierrez, K. M. (2013) “Prognostic categories and timing of negative prognostic communication from critical care physicians to family members at end-of-life in an intensive care unit”, Nursing Inquiry, 20 (3), pp232-244. • Hinkle, L., Bosslet, G. and Torke, A. (2015), “Factors associated with family satisfaction with end-of-life care in the ICU, A systematic review”, Chest, 147 (1), pp82-93. • Kisorio, L. and Langley, G. (2016) “End-of-life care in intensive care unit: Family experiences”, Intensive and Critical Care Nursing, 35, pp57-65. • Salins, N., Deodhar, J. and Muckaden, M.A. (2017) “Intensive Care Unit death and factors influencing family satisfaction of Intensive Care Unit care”, Indian Journal of Critical Care Medicine, 20 (2), pp 97-102.