Circumstances of clinical brain death in organ donors, 1999-2009. MVA = motor vehicle accident. Source: United Network for Organ Sharing (UNOS), 2009.
Mechanism of death in organ donors, 1999-2009. SIDS = sudden infant death syndrome. Source: United Network for Organ Sharing (UNOS), 2009.
Assess the Situation • What has the family been told about the patients condition? • What does the family understand about the patients condition? • Who can best provide them support at this time?
How is the Family Reacting? • Numbness/Denial/Shock • Depression • Elation • Anger • Guilt • Irritability • Confusion/Bewilderment • Avoidant Behavior and Withdrawal
How to Support the Family • Respond to emotions with empathy • Validate family’s feeling and concerns • Provide clear, consistent, timely communication about the patients condition • Respond to questions and concerns promptly. • Remember: a family’s in crisis only hears about 20% of the information provided
Things Not To Say or Do: • Do not say “It will be alright” • Do not push for details • Do not say “I know how you feel” • Never blame the patient or family for what happened • Avoid telling a survivor “It was not your fault” • Avoid giving advice
The transition from cure to comfort care
Process for healthcare providers Process of family members Develop a trusting relationship with the patient’s family Understand the critical illness Provide information about illness or injury Recognize futility or probably bleak outcome “Plant seeds” about prognosis Provide Consistent perspective on patient’s prognosis Come to terms with what this illness or injury means for the patient: • Suffering Hold meetings with the family • Values • Quality of life • Life story Involve other disciplines (pastoral care, social services) Continue supportive relationship with the family Take on role of surrogate decision maker Reiterate information as needed Face the question to forgo life- Redirect hope from cure to comfort sustaining therapies
The Process for Family Members 1. The families begins to understand the critical illness by seeking information about the irreversible physiological process that are occurring. The family recognizes the futility of the situation or probable bleak outcome. 2. The family comes to terms with the reality of what the illness or injury means for the patient. 3. The family recognizes they are responsible for making decisions and is ready to face the question of forgoing life-sustaining therapies Thelen, M., (2005). End-of-life decisions making in intensive care.
The Process for Health Care Providers 1. Laying the groundwork: • Develop a trusting relationship with the family • Provide information about the illness or injury • Plant seeds about prognosis 2. Shifting the picture • Provide consistent perspective of patients prognosis • Hold family meetings • Involve other disciplines 3. Accepting a new picture: • Continue supportive relationships with the family • Reiterate information as needed • Redirect hope from cure to comfort Thelen, M., (2005). End-of-life decisions making in intensive care .
Behaviors That are Helpful: • Providing timely communication • Providing consistent care providers • Treating the family with compassion and respect • Acting as an arbitrator between family members • Providing spiritual, emotional and grief support • Providing access to the patient Thelen, M., (2005). End-of-life decisions making in intensive care.
Behaviors That Hinder: • Avoiding or postponing discussions about a poor prognosis • Being reluctant to use the words “death” or “dying” • Using medical terms • Not knowing the patient • Giving inconsistent messages • Placing full responsibility for decision making on one person • Defining death as a failure • Withdrawing from interactions with the family Thelen, M., (2005). End-of-life decisions making in intensive care.
Relationship and Communication • Developing a trusting relationship • This helps families feel safe and supported in the decision-making process • Listening • Helps decrease feelings of guilt and burden • Communication with the family • Must happen early and often • Must be clear, direct and honest Thelen, M., (2005). End-of-life decisions making in intensive care.
Is it brain death or death? Recent studies show: • Of 195 physicians and nurses who care for patients with catastrophic brain injury: – only 35% correctly recognized the legal and medical criteria for determining brain death – 58% did not use a coherent concept of death consistently • Of 164 brain dead patients, the next of kin was queried about their understanding of brain death: – 28% stated brain death was the same as coma – 9% did not know Sullivan, J., Seem, D. L., & Chabalewski, F., (1999). Determining brain death.
Supportive Language • “ Despite our best efforts it appears that his condition has deteriorated. The physician is coming to evaluate your loved one and we will update you as soon he is here” • “There has been a change to his neurological condition, It appears to me that he has lost significant neurological responses. However, we need the physician to confirm my assessment”
Steps for a Family Meeting 1. Preparation – review chart, clarify goals and check emotions 2. Establish proper setting with seating available for everyone present 3. Introductions / Goals / Relationship of all present 4. Determine family understanding of condition 5. Summarize the situation avoiding jargon and answering questions 6. Silence / Respond to reactions 7. Present goal-oriented options and stress priority of comfort regardless of goal 8. Translate goals into plan of care 9. Document and discuss with team caring for patient and check emotions 10. Managing Conflict: - – Listen Use empathetic statements - – Determine source of conflict Clarify misconceptions – Set time-limited goals with specific benchmarks
Palliative Care Care that aims to relieve suffering and improve quality of life for patients with life- threatening illness and their families
Organ and tissue donation should be a continuation of end of life care
Organ donation should be integrated into quality end-of-life care. Patients and their families should be offered the opportunity to donate as standard end-of- life care, and information on organ donation processes should be an integral part of the many other decisions that are faced at that time. Institute of Medicine, 2006.
Variables that impede the consent process • Early mention of donation • Late referral • Trauma vs. non-trauma – sudden death without underlying history • Infrequent updates to family • Coupling the news of death with the request of donation • Rigid visitation during the patients end of life
Variables that support the consent process • Timely referral • LOPA is inclusive in the end of life plan • Collaborative effort to support the family • Donation is introduced at the appropriate time
In all situations we must diligently try to relate to family members on a human level and meet their informational and emotional needs
The Opportunity • The opportunity to donate is the family’s right and if donor designated - the patients right • Donation is proven to be beneficial for families going through the grieving process • Over 105,000 people are counting on us to get it right
What a difference a word can make Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around. ~~Leo Buscaglia
Quote From a Donor Family As I sat there...holding his hand, begging him to wake up, pleading with God to spare my child... I realized...Justin wasn't going home with me, his purpose on earth was complete, mine was yet to be revealed. Justin Harrison saved the lives of five people in 1997, when he was 15 years old. He did it without fanfare, through an act of quiet heroism.
Justin Harrison-Hero Marilyn Thorn - heart recipient Marilyn Thorn - Justin’s heart Sue Acaldo – kidney & pancreas recipient recipient Libby Harrison - donor mom
Stephanie When we were approached by the LOPA people in the hospital my first reaction was "no way", I'm not burying my daughter cut to pieces. My ex-husband did the listening and when I came to grips that she was not going to make it I realized that this would've been what Stephanie wanted and she probably would’ve said “Oh Mom, I want to do this.” • It turned out to be a very good thing for us and it saved 5 peoples lives that night. • God bless everyone who makes this decision and the ones that are on the receiving end.
• After Eleven years, Stephanie’s family(pictured) finally meets her heart recipient, Elizabeth (far left). They now consider themselves to be family and plan to visit often.
All of us are potential organ recipients as well as potential organ donors, each of us has a stake in the system. Institute of Medicine, 2006
References: • Alexander, D. A., & Klein, S., (2000). Bad news is bad news: Let’s not make it worse. Trauma , 2, 11-18. • Cooper, A., (2008). Palliative Care and the trauma patient. Journal of Hospice and Palliative Nursing , 10(5), 262-264. • Coyne, P., Bobb, B. T., & Campbell, M. L., (2009). Role of palliative care nursing in organ and tissue donation: HPNA position paper. Journal of Hospice and Palliative Nursing , 11(2), 127-128. • Institute of Medicine, (2006). Organ donation: Opportunities for action . Washington, DC: National Academies Press. • Owens, D. A., (2006). The role of palliative care in organ donation. Journal of Hospice and Palliative Nursing , 8(2), 75-76. • Shafer, T. J., Wagner, D., Chessare, J., Zampiello, F. A., McBride, V., & Perdue, J., (2006). Organ donation breakthrough collaborative: Increasing organ donation through system redesign. Critical Care Nurse , 26(2) 33-49. • Sullivan, J., Seem, D. L., & Chabalewski, F., (1999). Determining brain death. Critical Care Nurse , 19(2), 37-46. • Thelen, M., (2005). End-of-life decisions making in intensive care. Critical Care Nurse , 25(6), 28-37. • Truog, R. D., Campbell, M. L., Curtis, R., Haas, C. E., Luce, J. M., Rubenfeld, G. D., et al., (2008). Recommendations for end-of-life care in the intensive care unit: A consensus statement by the American Academy of Critical Care Medicine. Critical Care Medicine , 36(3), 953-962. • Valdes, M., Johnson, G., & Cutler, J. A., (2002). Organ donation after neurologically unsurvivable injury: A case study with ethical implications for physicians. Baylor University Medical Center Proceedings , 15(2),129-132.
The Clinical Processes Organ Donation:
The Organ Referral Process: Identification of a Potential Donor � All patients on a ventilator with a GCS < 5. � Patients that do not meet brain death criteria but have suffered a non-survivable head injury. � Patient’s life-sustaining support is being withdrawn.
Organ Referrals Organ Referral Potential Organ Donor Rule Out Brain Death Donation after Cardiac Death
Brain Death Increased intracranial pressure sufficient to impede the flow of blood into the brain causing cellular death of the brain tissue and/or herniation
Donation after Cardiac Death (DCD) The patient must have suffered a non- survivable brain injury or an anoxic event such that death would be imminent subsequent to the removal of ventilator and vasopressor support
Supporting the Potential Organ Donor • Avoid DECELERATION in care – Clinical support – Family support • Understanding the consequences of cerebral herniation • Preserves the option of donation
Avoiding “Deceleration in Care” Resuscitation of the patient Identification of the potential organ donor Continued resuscitation and declaration of brain death Consent and donor management Avoidance of deceleration in care
Predictable Consequences of Herniation • Loss of brain stem vasomotor centers – hypotension • Loss of hypothalamic – pituitary connection – Diabetes Insipidus • Inflammatory mediators are released causing worsening lung function • Autonomic storm of herniation can cause impaired heart function
Predictable Consequences Brain Death Injury Herniation Declaration Consent Blood Blood Pressure Pressure Diabetes insipidus Volume Depletion Cr & LFTs/ option for donation lost
Preserving the Preserving the Option of Donation Option of Donation Injury Herniation Brain Death Consent LOPA starts active Support Orders management
Consequences of Herniation • Loss vasomotor control + Intravascular Volume Decrease = HYPOTENSION Causes: – Diuretics – Diabetes Insipudus – Traumatic Blood Loss
Consequences of Herniation • Endocrine Dysfunction – Caused by pituitary hypoxia – ↓ amount or absence of antidiuretic hormone (ADH) from post. pituitary – Diabetes Insipidus – ↓ in ACTH (cortisol)
Consequences of Herniation • Catecholamine Surge – Increase in adrenaline (epinephrine) which is a potent alpha and beta agonist – ↑ HR and BP – Neurogenic pulmonary edema • Inflammatory mediator are released causing worsening lung function – Systemic vasodilation
Catecholamine Surge Catecholamine squeeze Mannitol 10 liters 10 liters Blood loss Brain death 5 DI 7 liters liters
The Results… • Hypovolemic Shock • Catecholamine Resistance • Hormonal Deficiencies • Hypoxia • Hypothermia • Electrolyte Abnormalities
Resuscitation • Maintain MAP> 65 – SBP-DBP/3 + DBP • CVP 4-12 • Rule of 100’s – U/O – SBP – HR – PaO2 – Temp
Resuscitation • Crystalloids – Maintenaince fluid @ 100 cc/hr with D5W with KCl (as needed) – ½ NS or ¼ NS CC:CC urine output replacement q1h • Colloids and Blood Products – At physician discretion
Vasopressors • Dopamine • Neosynephrine • Levophed (Norepinephrine) • Dobutamine • Vasopressin • Epinephrine
Hormonal Deficiencies: Antidiuretic Hormone (ADH) • A.K.A Vasopressin • Secreted from Pituitary • Helps with: – Hypovolemia – Hypotension – Hypernatremia
Vasopressin • Treatment for Diabetes Insipidus – If urine output >500 cc/hr for 2 hrs, begin Vasopressin gtt. – Mix Vasopressin 5 units in D5W 500 cc, and run at 10 cc/hr (0.1 units/hr). – Titrate to keep urine output 100-300 cc/hr. – May use DDAVP q 12 hours if preferred
Ventilation and Oxygenation • Maintain adequate O2 delivery to organs • Respiratory Treatments – CPT, Turn Q2h – Atrovent and Ventolin • ABG – Correct acid/base imbalances – Optimize oxygentation : +5 PEEP
Thermal Regulation: Hypothermia • Due to interruption of the temperature-regulating center in the hypothalamus. • ↓ cardiac function • ↓ amount of O2 supplied to organs – Maintain Temp of 37°F with warming blanket and/or warm fluids
Electrolyte Abnormalities Why balance? Fluid and electrolyte imbalances directly effect the hemodynamic stability of the donor and the ultimate viability of the organs for transplant.
Electrolyte Abnormalities: Hypernatremia • Normal Na+ level 137-150 • Treat if Na+ > 157 – Free water to NGT – Hypotonic IV bolus (D5W or ¼ NS) – Vasopressin if U/O is > 500 – Lasix/Diuril if U/O is < 200 with absence of hypovolemia
Electrolyte Abnormalities: Hyper/Hypokalemia • Hyperkalemia – Lasix IV – Insulin IV (usually accompanied with D50W) – CaCl or Ca gluconate – NaHCO 3 � Remember to use caution when using one electrolyte to correct another. They often have reciprocal effects on each other.
Electrolyte Abnormalities: Hyper/Hypokalemia • Hypokalemia – KCl: 20-40 meq over 1-2 hours – KPhos: 27 mmols = 40 meq K+ Use if phosphorous is low May give K acetate if Cl and Phos high � Kidneys excrete 20-40 meq K+ in each liter of urine
Electrolyte Abnormalities: Hypocalcemia –1-2 amps of CaCl or Ca gluconate –Ca binds with albumin therefore are often given at the same time
Organs Recovered for Transplant: Brain Dead Donor Heart Kidneys Liver Lungs Pancreas Small I ntestine
Donation after Cardiac Death • Many families that have loved ones who have suffered non-survivable injuries and wish to discontinue life support. • DCD gives these families the opportunity to save lives through organ donation
Identification of a Potential DCD Donor • GCS of 5 or less, on a ventilator • Patient who cannot sustain life without continued medical intervention (ventilator support, vasopressors etc) • Poor neurological prognosis, does not meet brain death criteria. • A discussion regarding “DNR” or withdrawal of support is anticipated
Identification of a Potential DCD Donor • Medical Suitability • Life Support Dependence
Identification of a Potential DCD Donor • Medical Suitability – All patients under 70 with GCS 5 or less are initially considered for DCD – medical history and labs/diagnostic tests are utilized to determine first if the patient is medically suitable
Identification of a Potential DCD Donor • Life Support Dependence – If medically suitable, an evaluation is done to determine whether or not the patient will cardiac arrest in less than 1 hour – Ventilatory dependence assessed – Pharmacologic dependence assessed
Organs Recovered for Pancreas Transplant: DCD Liver Kidneys Lungs
Avoiding “Deceleration in Care”: Potential Organ Donor • Continuous clinical support and management prior to approach for donation – Allows families the opportunity to say “yes” – Donor stability – Increase conversion rate – Increase the number of potential lives saved through organ donation
Potential Donor Family Support: Avoiding “Deceleration in Care” • Recognizing the Family’s Needs – Education at the Bedside – Participation in Bedside Care – Personal Items at Bedside • Supportive Language • Frequent Updates • Spiritual Support • Palliative Care
Avoiding “Deceleration in Care”: Potential Organ Donor Family • Supporting potential donor families is a process that begins at time of admission • Supportive language enhances family understanding of brain death • Supportive communication and education are key elements to a family support plan
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