TGLN (8456) (Toronto Area)

Transcription

1 A Resource Manual for Routine Notification & Request in Ontario Hospitals Trillium Gift of Life Network 522 University Ave., Suite 900 Toronto, ON M5G 1W TGLN (8456) (Toronto Area) Routine Notification and Resource Manual Page 1 of 44

2 Queen's Printer for Ontario, 2006 The materials in this manual are protected by Crown copyright (unless otherwise indicated), which is held by the Queen's Printer for Ontario. If credit is given and Crown copyright is acknowledged, the materials may be reproduced for non-commercial purposes. The materials may only be reproduced for commercial purposes under a license from the Queen's Printer, with the exception of Government of Ontario legal materials <copypolicy.html> (statutes, regulations and judicial decisions).

3 Dedication This resource manual is dedicated to the special families who gave so much while facing the greatest challenge of all, the loss of a loved one. Organ and tissue donation saves or enhances thousands of lives every year. Sign your donor card, talk to your family. RNR Manual 2007 V1-R 2

4 Table of Contents Page Click Routine Notification and Request Patient Death Algorithm...6 Legislative Requirements...7 How will the legislation impact my practice?...7 Can I provide patient information with the current privacy legislation?...7 Benefits...8 Does RNR Work?...8 How does RNR help people who need tissue transplants in Ontario?...8 How does RNR help families who have lost a loved one?...8 How does RNR benefit me as a healthcare professional?...8 Step 1 Call...9 Am I responsible for making the call?...9 When do I call? Can I call before death?...9 What is the definition of expected death?...9 Why is expected death notification so important?...9 Who am I giving the information to?...10 What information will I have to provide?...10 What happens if deaths are not reported?...10 Step 2 Screen...11 Why am I asked if the patient is mechanically ventilated?...11 What initial patient information will I be asked for to screen for eligibility to donate?...11 Why am I asked about the patient s medical history?...11 Step 3 Ask...12 Does every patient s family need to be asked about donation?...12 Who is responsible for asking the patient/family and obtaining consent?...12 When and where should the request conversation occur?...12 Who should be present during the discussion?...13 What information should be shared initially with families?...13 What happens if a family says no?...13 Guidelines on the Consent Process...14 Who makes the donation decision?...14 Who is the patient s substitute?...14 What is considered valid consent under the TGLN Act?...15 How do I obtain telephone consent?...15 What information is included when explaining the donation process? How do I complete the consent form with the family?...16 RNR Manual 2007 V1-R 3

5 Table of Contents (continued) Page Click Is every effort made to use donated tissue for transplantation?...16 How does transfer for surgical recovery impact the consent process?...16 What steps follow the donation discussion or consent?...17 What happens after I fax consent to TGLN?...17 Next Steps After Consent...18 Once the consent is obtained, what other information is needed?...18 What information is needed related to Coroner involvement and autopsy?...19 What documentation is required from the Coroner to proceed with donation?...19 Are there any additional considerations if a Coroner is involved?...19 Why is the patient s cancer history so important?...19 What current clinical information is needed?...19 Why is the amount of intravenous fluid reviewed?...20 What details are needed about infectious disease?...20 What information is needed about cultures, results and antibiotics?...20 What blood samples are required for infectious disease testing?...21 Who completes the medical and social history questionnaire?...21 How is the tissue integrity preserved?...21 How do we care for the donor s body after recovery?...21 What are the considerations for release of the donor body?...22 What follow-up occurs with donor families?...22 RNR Manual 2007 V1-R 4

6 Appendices Page Click Appendix 1 - Routine Notification and Notification Worksheet Appendix 2 Next Steps Worksheet Appendix 3 Request Outcome Form Appendix 4 Criteria for Organ Donation Who is eligible to donate organs at death?...30 Can you donate organs after cardiac death in Ontario?...30 What is neurological death?...30 What is donation after cardiac death (DCD)?...31 When do I call TGLN? Do I call before death?...31 What is the definition of Expected Death?...31 Why is notification of expected death important with potential organ donors?...32 Appendix 5 - Organs and Tissue Donation Options What organs and/or tissues can be donated?...33 Tissue donation...33 Ocular tissue...33 Musculoskeletal tissue...34 Skin...34 Heart valves...35 Appendix 6 Surgical Timelines...36 Appendix 7 Discussing the Opportunity to Donate Meeting the needs of the family...37 Pre-approach planning...37 Transition to the donation discussion...38 Suggested phrases for healthcare professionals...39 Sharing how donation helps recipients...39 Appendix 8 Cultural and Religious Considerations Religious beliefs about donation...41 Family concerns based on beliefs...41 Strategies to assist in dealing with various concerns...42 Appendix 9 Coroner s Directive...43 RNR Manual 2007 V1-R 5

7 RNR Manual 2007 V1-R 6

8 Legislative Requirements In an effort to improve Organ and Tissue Donation, legislation is being phased into hospitals across the province. This directly affects RNs/RN(EC)s, RPNs and physicians in designated hospitals across Ontario. Part 2 of the Trillium Gift of Life Network Act states (1) A designated facility shall notify the Network as soon as possible when a patient at the facility has died or a physician is of the opinion that the death of a patient at the facility is imminent by reason of injury or disease. How will the legislation impact my practice? If you work in specified units in a designated hospital that has received notice from Trillium Gift of Life Network, the legislation impacts your practice. CALL All deaths will be reported to Trillium Gift of Life Network (TGLN) at (Toronto Area) or (Toll Free) Only RNs/RN(EC)s, RPNs, and physicians may report deaths TGLN s Provincial Resource Centre (PRC) is available 24/7 to receive calls SCREEN A series of brief questions will be asked related to the reported death Be prepared by having the chart readily available and an RNR Worksheet completed ASK When advised by TGLN, inform families of the patient s preliminary eligibility to donate Provide families the opportunity to donate, honour a loved one s choice, and help others in need PRC available to support healthcare professionals through the process Contact TGLN by telephone or fax the Request Outcome Form to share the family s decision Can I provide patient information with the current privacy legislation? Under the TGLN Act, TGLN has the authority to collect personal and health information for specific purposes outlined in the Act. Therefore hospitals and healthcare professionals are able to share information for Routine Notification and Request. The information collected is limited to that which is necessary to determine if the person who has died is eligible to donate organs and/or tissues. RNR Manual 2007 V1-R 7

9 Benefits Tissue donation saves and enhances the lives of thousands of Ontarians every year. Does RNR Work? In the first 6 months after RNR legislation has come into effect, Ontarians and their families have consented to three times the number of tissue donations in the same time period compared to the previous year This increase in donation supports the fact that previously the reason most people did not donate is because no one asked How does RNR help people who need tissue transplants in Ontario? Tissue donation transforms the lives of recipients o restoring sight so mothers can see their children o replacing diseased bone so children can run and play o ensuring infants have working heart valves to grow up strong Currently Ontario meets only one tenth of its need for tissue and relies on tissue donations from outside of Ontario RNR reduces waiting lists and time waiting for many Ontario residents and provides tissue transplants that are safe How does RNR help the families who have lost a loved one? RNR ensures families have the opportunity to honour a loved one s wishes. For Ontarians unaware of the choice to donate, an opportunity to give the gift of life will be offered to families when screening indicates donation is possible Donation has been documented to help the healing and grieving process and also provides comfort to families at a time of loss Donation gives families an opportunity to make a choice at a time when many experience a loss of control Every donation discussion with the family of an eligible patient contributes to tissue donation awareness How does RNR help me as a Healthcare Professional? Healthcare professionals report a feeling of satisfaction by contributing to the well being of potential recipients, and giving families hope that something meaningful has resulted from their loss Reporting all deaths saves hospital staff time. Healthcare professionals no longer have to determine a patient s eligibility for organ and/or tissue donation prior to contacting TGLN RNR meets professional practice standards. Both the Canadian Council on Health Services Accreditation and the College of Nurses of Ontario include donation as an integral part of quality end-of-life care RNR Manual 2007 V1-R 8

10 Step 1 - Call Report all deaths to TGLN 24/ (Toll Free) (Toronto area) The act of reporting all deaths to TGLN is called Routine Notification Am I responsible for making the call? The TGLN Act stipulates the caller must be an RPN, RN/RN(EC) or MD Individual hospital policy may specify one or all of the above as the designated Routine Notifier for the facility. For example, the primary physician or Care Leader When do I call? Can I call before death? Call TGLN within one hour of the patient s death Notification may occur before death if a physician is of the opinion that death is expected by reason of death or injury What is the definition of expected death? Expected death includes situations where there is a plan with mechanically ventilated patients to: pronounce death by neurological criteria (brain death) withdraw life sustaining therapy (extubation or removing ventilator) A call before death may also occur: as per hospital policy and/or established Clinical Triggers when the patient/family is requesting information about organ and tissue donation Why is expected death notification so important? Expected death notification is important to enable TGLN to offer the opportunity of organ donation when eligible The complexity of organ donation requires on-site support for healthcare professionals and families During the initial notification call TGLN will screen for the potential to donate organs by asking if the patient is receiving ventilator support The On-call coordinator will respond on-site if required TGLN Coordinators will participate in the discussion when there is potential to donate organs RNR Manual 2007 V1-R 9

11 Who am I giving the information to? All information is reported to TGLN s Provincial Resource Centre located in Ontario and is confidential, collected for the specific purpose of donation TGLN s Call Operators are specifically trained to facilitate the Routine Notification Process Specialists in the area of organ and tissue donation (Clinical Service Coordinators/Tissue Coordinators) are available for consultation, referral and donation support What initial information will I have to provide? TGLN has created an RNR Worksheet to help you prepare for the call (Appendix 1). Prepare to make the call by completing the RNR Worksheet. The information required for the call is outlined below: Your name & designation (must be MD, RN/RN(EC), RPN only) Hospital name/unit/telephone # Patient name, date of birth, hospital ID # Admission date Family contact information Suspected cause of death Admitting diagnosis Time and date of death Time and date of intubation (if patient had an endotrachial tube or tracheostomy) Positive history of specific diseases as noted on the RNR Worksheet TGLN will provide you with a TGLN # specific to the patient and ask you to document it in the patient s chart. The patient s preliminary eligibility to donate is determined with TGLN during the Screen process. Final eligibility to donate is determined by the tissue banks. What happens if deaths are not reported? TGLN provides each hospital and the Ministry of Health and Long-Term Care with reports on the number of deaths reported from the hospital. If the number of deaths does not match the number of routine notifications to TGLN, the hospital can be fined. RNR Manual 2007 V1-R 10

12 Step 2 - Screen The Call Operator will ask a series of questions to determine if the patient potentially has the opportunity to help others through the gift of tissue donation. Each person s eligibility to donate is evaluated on a case-by-case basis. Why am I asked if the patient is mechanically ventilated? Donation options differ for patients if they are mechanically ventilated at the time of the routine notification call (Appendix 4) Less than 2-5% of patients are eligible to donate organs at death and they must be on mechanical ventilation and referred to TGLN while ventilated Other questions the TGLN coordinator may ask to determine if mechanically ventilated patients are eligible to donate organs include: o Did the patient have a brain injury at admission? o Did the patient have a stroke or cardiac arrest at or during this admission? o Are the patient s pupils reactive to light? o Is the patient on a set rate on the ventilator? o Is the patient breathing above the set rate on the ventilator? If the patient is eligible for organ donation, a TGLN coordinator will be sent on site For more information on organ donation see Appendix 4 Criteria for Organ Donation What patient information will I be asked for to screen eligibility to donate? Use the RNR Worksheet to help you prepare for the call (Appendix 1). Have the patient chart, care plan, and death certificate (if available), and provide the following information if known: History of: HIV VRE Alzheimer s Hepatitis B CJD (Mad Cow) Parkinson s Hepatitis C Rabies Leukemia MRSA Active TB Lymphoma Donation wishes of patient and/or family Why am I asked about the patient s medical history? The brief medical history is required to determine preliminary eligibility to determine what donation options are available Canada standards preclude individuals with certain disease processes from donating tissues or organs for transplantation to minimize the risk of disease transmission If consent for donation is received, infectious diseases testing is done and a medical-social history questionnaire may be required Final eligibility to donate for transplant is determined by the tissue banks RNR Manual 2007 V1-R 11

13 Step 3 - Ask If, during the Routine Notification screening process, the patient is deemed preliminarily eligible for donation, the Provincial Resource Centre will advise the healthcare professionals to inform the family of the patient s eligibility to donate and provide the opportunity for the family to donate. The donation discussion ensures the family is given the opportunity to donate and to make a decision that best reflects the patient s wishes. Legislation has been proclaimed and is being phased into hospitals. This legislation directly affects RNs, RPNs and physicians in designated hospitals and specified units across the Province of Ontario. Part 2 of the Trillium Gift of Life Network Act states (1) Consent legislation Part II.1, 8.1(5) of the TGLN Act states; if the Network advises, the designated facility is required to contact the patient or patient s substitute, and the facility shall make reasonable efforts to ensure that, (a) the patient or the patient s substitute is contacted to determine whether he or she consents to the removal of tissue from the body of the patient for transplant; (b) the contact is made in a manner that meets the requirements of the Network and by a person that meets such requirements as may be prescribed by the Minister. If Does every patient s family need to be asked about donation? Only the families of patients who have been identified by TGLN as preliminarily eligible to donate need to be asked about donation TGLN will advise the healthcare professional if the patient is eligible to donate for transplantation or if the patient is eligible to donate for research and education Who is responsible for asking the patient/family and obtaining consent? Each hospital is ultimately responsible for ensuring a donation request is completed with the appropriate patient substitute when the patient is deemed eligible Hospital policy may designate specific healthcare professionals to assume the Routine Request process, for example, a physician or Care Leader When and where should the request conversation occur? A quiet, private location should be selected to enable staff to optimally support the patient substitute It is recommended the discussion take place after the patient s substitute has been notified of the patient s death, demonstrates understanding/acceptance of death and is prepared to discuss the next steps in after-life care The donation option can be integrated with other end-of-life care information. For example, obtaining patient s belongings or funeral home arrangements (Appendix 7) RNR Manual 2007 V1-R 12

14 Who should be present during the discussion? Ideally, healthcare professionals who have developed a positive relationship with the patient/substitute are involved in the discussion There may also be people closely associated with the patient who, at the discretion of the patient or patient s substitute, should be invited to participate What information should be shared initially with families? First, discuss the benefits of donation. Families report they chose to donate because of the opportunity to help someone in need. Provide examples of how tissue donation and transplantation has helped recipients and their families. After sight-restoring transplant surgery, recipients can return to work or school Donated heart values means that children can live at home, without needing machines to support their breathing or to monitor heart function Older adults can stay in their own homes longer with the mobility transplanted bones and joints provide Firefighters and other burn survivor s wounds are treated with donated tissue to help them heal Please note it is important to advise families that on occasion donation may not result in transplantation. Final eligibility to transplant the donated tissue occurs once the medical-social history, serology tests results for infectious diseases, and possibly the autopsy results (if applicable) are known and is determined by the tissue banks. What happens if a family says no? If the family does not choose to donate, thank them for considering donation and continue to provide end-of-life care. If a reason for declining donation arises naturally in the conversation, please include this when you document the request and outcome in the patient s hospital chart with the TGLN number. Ensure that TGLN is aware of the outcome of the donation discussion. A Request Outcome form can be faxed to the Provincial Resource Centre (Appendix 3). RNR Manual 2007 V1-R 13

15 Guidelines on the Consent Process The Trillium Gift of Life Network Act establishes clear requirements for consent to donate organ and/or tissues. Healthcare professionals are responsible for ensuring the documentation of consent is consistent with guidelines established by TGLN to enable recovery and transplantation. Who makes the donation decision? Prior to death any person who has attained the age of sixteen years may consent for donation of organs and/or tissues after death. A person may express their wish to donate through: A signed donor card A donation code on an Ontario Health Card Another signed document, a living will or last will and testament A TGLN consent form Orally in front of two witnesses during their last illness After a patient s death The TGLN Act defines who has legal authority to consent to donation, this person is called the Patient Substitute. The Consent to Treatment Act and Patient Substitute Decisions Act do not apply to consent for donation after death: When the wishes of the deceased person are known, the patient substitute is asked to affirm the patient s wish to donate When the patient s wishes concerning donation are not known, the patient substitute provides consent on behalf of the patient In the rare situation where the patient substitute can not affirm the patient s previously expressed wishes, Trillium Gift of Life Network would not proceed with the donation Who is the patient substitute? The TGLN Act outlines the hierarchy in descending order of legal authority to give consent as the patient s substitute. i) Spouse or same-sex partner a) Married (regardless of cohabitation) b) Living together immediately prior to death and have co-habited for at least one year or are together the parents of a child ii) Any one of the person s children iii) Either one of the person s parents iv) Any one of the person s brothers or sisters v) Any other of the person s next-of-kin vi) Person lawfully in possession of the body (contact TGLN to discuss) If the person of higher priority does not exist or is not readily available to provide consent, someone of a lesser priority may provide consent There must be no known objections to donation from anyone in the same or higher priority relationship to proceed with consent RNR Manual 2007 V1-R 14

16 What is considered valid consent under the TGLN Act? Consent may be provided in a number of ways: In writing Orally in the presence of at least two witnesses By recorded telephonic or other recorded message (i.e. fax or voic ) How do I obtain telephone consent? To obtain consent over the telephone from the patient s substitute, read the consent form to them, clearly stating the organs/tissues to be donated Sign in the appropriate section of TGLN s Consent to Donate Organs and/or Tissues form A second person must act as a witness by asking patient substitute to confirm their relationship to the patient and the organs and/or tissues that they are consenting to donate. The witness signs and dates the telephone consent section What information is included when explaining the donation process? As part of the consent process healthcare professionals are responsible for providing information about the donation process. TGLN will advise what donation options are available. The additional information to provide is outlined below: Decision to donate is private and voluntary Medical social history interview with family/friend is required and includes questions similar to the one required with blood donation about history of sexual relationships, alcohol and drug use Access to medical records is required to collect and clarify information Blood samples are drawn and sent for testing for infectious diseases such as HIV, Hepatitis B and C, and syphilis Recovery of the tissue may occur within 24 hours Eye donation does not require an operating room and can be done within most hospitals Donation of heart for valves, musculoskeletal tissue and skin is performed in the operating room, any incisions will be closed with care Skin donation involves recovering a paper-thin layer from the back and occasionally legs On occasion, a transfer of the patient s body may be required to recover donated tissue Impact on funeral arrangements and donation outcome information Rarely, recovery of tissue may delay the release of the patient s body to the funeral home and may influence timing of funeral ceremony Donation does not prevent cremation or open casket ceremony Heart for valve donation and musculoskeletal tissue donation may influence clothing for burial RNR Manual 2007 V1-R 15

17 Donation does not add any additional expense to the patient s estate and no profit is gained through the donation or transplantation Families of donors are provided with general information about recipient(s) via letters from TGLN and/or Eye Bank of Canada (Appendix 5 and 6) How do I complete the consent form with the family? To complete the consent form: Ensure correct patient name on consent with TGLN reference # and hospital identification # Indicate the consented organ and tissue choices with a check mark Indicate choices regarding consent to teaching and/or research if organs/tissues are not suitable for transplantation Indicate consent to transfer for recovery Ensure clear documentation of name/address of patient substitute Sign in appropriate space as the healthcare professional who has obtained consent A signed consent form establishes that the patient substitute s questions have been answered to their satisfaction and that the donation may proceed. Is every effort made to use donated tissue for transplantation? Every effort is made to use donated tissue for transplantation, however, if the tissue is not suitable for transplantation, use in scientific research and/or medical education may be possible if consent is provided The ideal time to ask about a family s interest in donating tissue for scientific research and/or medical education, should transplantation not be possible, is during the donation discussion when you advise families the final evaluation of tissue suitability for transplantation is made following recovery. How does transfer for surgical recovery impact the consent process? It is sometimes necessary to transfer the patient to another hospital in order to access an operating room to complete the donation process. A consent to transfer is needed. The Provincial Resource Centre can assist hospital staff in determining if transfer for surgical recovery is required on a case-by-case basis. Consent to Donate Organs and/or Tissues form provides a space for the patient s substitute to provide consent for transfer to another facility Obtain consent for transfer in every situation, even when it is not likely to occur. This prevents having to contact the family later if needed RNR Manual 2007 V1-R 16

18 What steps follow the donation discussion or consent? 1. Document the family s decision about donation in the patient s hospital chart with the corresponding TGLN reference #. Documentation ensures the family is not approached subsequent times after they have made a decision about donation 2. Contact TGLN - please quote TGLN reference number and inform them of the family s decision about donation 3. Fax the consent form to the Provincial Resource Centre at (Toll Free) or (Toronto Area). The original consent stays with the body so it can be reviewed by healthcare professionals involved in the donation process including tissue bank personnel What happens after I fax consent to TGLN? There are four steps to completing the healthcare provider s role in the donation process: 1. Provide Provincial Resource Centre with family contact details to facilitate medical social questionnaire telephone interview. This is best facilitated while family/friend is at the hospital 2. Complete a Next Steps Worksheet or have the patient s chart available to provide details of the patient s current admission and treatment. (See Next Steps Worksheet, Appendix 2) 3. Blood samples may be required, TGLN will advise what is needed 4. Preservation of tissue integrity These processes are described in the next section. RNR Manual 2007 V1-R 17

19 Next Steps After Consent Once the consent is obtained, what other information is needed? The Consent to Donate Organs and/or Tissues includes consent for TGLN to access the patient s health records in order to facilitate donation. The Coordinators at the Provincial Resource Centre will ask you for the information outlined in the Next Steps Worksheet (Appendix 2). The information required includes: Medical Information Ontario Healthcard number Name of Attending physician Name of Family physician Coroner s name (if applicable) Any plans for autopsy coroner or hospital Cancer History (if applicable) Current Clinical Information Admission diagnosis Concurrent diagnoses Current medications Date of admission/entry to hospital Date of intubation and details (such as difficult intubation etc) Patient s height and weight (exact or estimated is acceptable) Screening for Infectious Disease Last recorded Temperature Last white blood cell date and count Last chest x-ray date and results Date last cultures (blood, urine, sputum) were obtained Results of last cultures Any history of positive cultures Antibiotic history Intravenous Fluids Amount of crystalloids patient received in last hour before blood is drawn for serological testing or in the hour prior to patient s death Amount of colloids (including blood products, pentaspan) in last 48 hours of life RNR Manual 2007 V1-R 18

20 What information is needed related to Coroner involvement and autopsy? The Coroner must give consent for organ and/or tissue donation if the patient s death is considered a coroner s case under the Coroner s Act. Your role as a healthcare professional is to contact the Coroner at death as per hospital policy, and ask permission for donation if patient is eligible. Provide TGLN with the following: 1. Coroner name and contact information 2. The restrictions the Coroner has placed on what tissue may be donated 3. Requests by Coroner for an autopsy With all deaths, please advise TGLN if the family has consented to a hospital-based autopsy. What documentation is required from the Coroner to proceed with donation? A Death Certificate or Warrant to Bury, must be completed by the coroner when a death is designated a coroner s case The surgical recovery process (including the transfer of the body) may not commence unless the Coroner has granted permission (Appendix 9 - Coroner s Directive) Are there any additional considerations if a Coroner is involved? Coroner involvement in donation cases may impact when the body is released to the funeral home It is essential this information is shared with the family and discussed with the coroner involved. Why is the patient s cancer history so important? The patient s cancer history can be complex and details are necessary to determine eligibility to donate tissues If there is documentation of the patient s cancer history in the current hospital chart, please have this information ready to discuss with the Coordinator What current clinical information is needed? Primary and concurrent diagnoses documented during the patient s most recent hospitalization Medications the patient received during their most recent hospitalization Height, weight and the amount of intravenous fluid RNR Manual 2007 V1-R 19

21 Why is the amount of intravenous fluid reviewed? Intravenous fluids and transfusion of blood products may dilute the blood volume and impact the accuracy of testing for infectious diseases. For this reason, Health Canada standards require a hemodilution calculation to be performed by the TGLN coordinator. Your role as a healthcare professional to assist this process includes providing the following information: 1. Amount of crystalloids the patient received one hour before blood specimen was obtained or the amount the patient received one hour before death 2. Amount of colloids the patient received 48 hours before blood specimen was obtained or the amount the patient received 48 hours before death Colloids include: blood transfusion products (packed red blood cells, platelets, fresh frozen plasma) and manufactured plasma volume expanders (i.e Pentaspan). What details are needed about infectious disease? Health Canada standards require thorough screening of the patient s medical history related to infectious diseases. This screening ensures tissue recipients are at the lowest possible risk of contracting illness from a tissue graft. The information needed to assess for transmission of infectious disease include: 1. Trends in body temperature 2. White blood cell count 3. Positive cultures 4. Chest x-ray results consistent with pneumonia 5. Antibiotic history 6. Intubation/artifical airway history If the patient has died in a setting that does not routinely monitor body temperature or obtain blood samples, please indicate this in discussion with the Coordinator. What information is needed about cultures, results and antibiotics? All cultures collected need to be reviewed with TGLN coordinator including the type of specimen, date of collection and result (including preliminary results) The antibiotic history including number of antibiotics given, the dosage of each drug and the length of each antibiotic course assists in determining the risk of infection for the potential recipients and whether the tissue is suitable to be donated for transplantation In cases of expected death where the patient and family have made the decision to donate tissue and have signed a consent form, the Provincial Resource Centre may ask hospital staff to obtain a blood sample to be tested for culture and sensitivity. RNR Manual 2007 V1-R 20

22 What blood samples are required for infectious disease testing? The coordinators in the PRC will advise you if blood samples are required If asked to obtain samples, note the type of additive in the blood tube as the colour of blood tubes varies with each hospital Who completes the medical and social history questionnaire? The Coordinator at the Provincial Resource Centre will conduct an interview over the telephone with the patient s family. This is best completed while the family is still at the hospital Once the consent form has been completed, your role as a healthcare professional is to make arrangements to connect the family with the Provincial Resource Centre Should the family need to leave the hospital before the interview takes place, please inform them you will be providing their contact information to TGLN for follow-up or make alternative arrangements with the family and the Coordinator to initiate contact The interview takes a minimum of 20 minutes to complete. The information shared by the family during this interview is sensitive. Ideally a private room should be provided for family members to have this conversation. How is the tissue integrity preserved? Healthcare professionals play a key role in preserving the integrity of donated tissue before recovery. To ensure the best possible tissue graft, transport the body to the morgue for cooling as soon as possible. If eyes are being donated, lubricate the eyes with saline drops and tape the eyelids shut Raising the head of the bed to degrees will decrease the chance of bruising during recovery, you may also use a pillow or flannel roll placed under patient head Placing a cold compress or package of ice over the closed eyelids will also decrease the risk of any bruising How do we care for the donor s body after recovery? Care of the donor s body after completion of the recovery surgery is generally the same as for routine care after death (e.g. ensure body is clean and dry; close eyes; etc.) There may be specific instructions from the Coroner or requests from the family regarding preparation of the body for release that require consideration. A TGLN Coordinator will ensure recovery personnel are informed of any special considerations in advance of the surgery. RNR Manual 2007 V1-R 21

23 What are the considerations for release of the donor body? 1. The release of a body following organ and/or tissue recovery is usually consistent with the hospital s procedure for release after death 2. The admitting or health records departments are asked to contact TGLN when the body is to be released 3. The original Death Certificate (or Warrant to Bury) must remain with the body; a copy may be included in the patient s hospital medical record What follow-up occurs with donor families? TGLN and the tissue banks have processes in place to thank families for consenting to donation and to advise them of the outcome of the donation. RNR Manual 2007 V1-R 22

24 Appendices Page Click Appendix 1 - Routine Notification and Notification Worksheet...24 Appendix 2 Next Steps Worksheet Appendix 3 Request Outcome Form...28 Appendix 4 Criteria for Organ Donation Who is eligible to donate organs at death?...30 Can you donate organs after cardiac death in Ontario?...30 What is neurological death?...30 What is donation after cardiac death (DCD)?...31 When do I call TGLN? Do I call before death?...31 What is the definition of Expected Death?...31 Why is notification of expected death important with potential organ donors?...32 Appendix 5 - Organs and Tissue Donation Options What organs and/or tissues can be donated?...33 Tissue donation...33 Ocular tissue...33 Musculoskeletal tissue...34 Skin...34 Heart valves...35 Appendix 6 Surgical Timelines...36 Appendix 7 Discussing the Opportunity to Donate Meeting the needs of the family...37 Pre-approach planning...37 Transition to the donation discussion...38 Suggested phrases for healthcare professionals...39 Sharing how donation helps recipients...39 Appendix 8 Cultural and Religious Considerations Religious beliefs about donation...41 Family concerns based on beliefs...41 Strategies to assist in dealing with various concerns...42 Appendix 9 Coroner s Directive...43 RNR Manual 2007 V1-R 23

25 Routine Notification and Request Worksheet Trillium Gift of Life Network (TGLN) Report all deaths to the Provincial Resource Centre Toll Free or Toronto The Provincial Resource Centre will ask you: 1. Name & Designation of caller - must be RN, RPN, RN (EC) or MD 2. City/Town Hospital Unit Telephone number 3. Name of patient 4. Date of Birth: day month year 5. Gender : female male 6. Health Card #: NA (out-of-province: out of country) 7. Date of Entry/ Admission to hospital Day month year 8. Hospital Identification Number*: *MRN, Hospital File, Bradma, etc. 9. Family contact & phone #: TGLN will provide you with a TGLN reference number: # 10. Date & Time of Death: day month year 11. What is the suspected cause of death? 12. What is the admitting diagnosis? 13. Clinical history - Use the sidebar to indicate if the patient has a positive history of the conditions listed. 14. Document TGLN call and donation eligibility in the patient s Progress Notes. Record the TGLN reference number. Note History of any of the following: HIV Hepatitis B Hepatitis C MRSA VRE CJD (Mad cow) Rabies TB Alzhemier s Parkinson s ALS MS Leukemia Lymphoma ET tube or tracheostomy Date & time inserted: Ventilated 1. If the patient is eligible to donate, inform the family that donation is an option. 2. Document the outcome of the conversation with the family in the Progress Notes. Include the relationship to the patient (i.e. mother). 3. Complete Consent to Donate Organs and/ or Tissues form with patient s substitute and fax both sides to PRC. 4. Contact TGLN to report family s decision. If the family declines donation a Request Outcome form can be faxed to the Provincial Resource Centre. Fax Toll Free or Toronto This form contains confidential personal information. Please retain or dispose in accordance to hospital policy. RNR Worksheet January 28, 2008_V6_R

26 RNR Manual 2007 V1-R 25

27 Appendix 2 Next Steps Worksheet RNR Manual 2007 V1-R 26

28 RNR Manual 2007 V1-R 27

29 Appendix 3 Request Outcome Form RNR Manual 2007 V1-R 28

30 RNR Manual 2007 V1-R 29

31 Appendix 4 Criteria for Organ Donation Who is eligible to donate organs at death? Only 2-5% of all patients are eligible to donate solid organs at death. The organs that may be donated for transplant include: heart, lungs, liver, kidneys, pancreas, and bowel. Only patients who have sustained a non-recoverable injury and are on life-sustaining therapy (i.e. ventilator and IV medication to support hemodynamics) at the time of notification to TGLN may donate organs. Can you donate organs after cardiac death in Ontario? Trillium Gift of Life Network is now recovering organs after cardiac death in Ontario. Organs have been recovered and transplanted after cardiac death for a number of years in many other jurisdictions in the United States and Europe. Prior to the development and acceptance of neurological death, donation after cardiac death or DCD was the only process for organ donation. The unmet need for organs and better surgical recovery techniques encouraged the reintroduction of donation after cardiac death so as to increase the number of organs available for transplant. This is very helpful for families who want to honour their loved one s wishes to donate in situations where a non-recoverable injury has occurred, when the person does not meet neurological death criteria. For example, if a person who suffers a non-recoverable subarachnoid hemorrhage no longer has any brainstem reflexes with the exception of bilateral corneal response, they may have the option to donate organs after cardiac death. What is neurological death? Neurologically determined death (brain death) is defined as the irreversible loss of the capacity for consciousness combined with the irreversible loss of all brainstem functions, including the capacity to breathe. The patient is on mechanical ventilation and their heart continues to beat to perfuse the organs. Conditions that may lead to neurological death include: Intracranial hemorrhage Intracranial hypertension Ischemia Anoxia Brain tumour To donate organs for transplantation, two physicians must examine the patient and pronounce the patient dead. After consent, mechanical ventilation and pharmacological support is continued in the ICU and operating room to ensure organ perfusion. Assistance for the determination of neurological death is available by contacting the Trillium Gift of Life Network s Provincial Resource Centre at in the Toronto area or toll free number RNR Manual 2007 V1-R 30

32 What is donation after cardiac death (DCD)? In situations of donation after cardiac death, the patient has sustained a non-recoverable injury, and does not meet the criteria for neurological death. An example of this would be a person who suffers a non-recoverable sub-arachnoid hemorrhage and no longer has any brainstem reflexes with the exception of bilateral corneal responses. In discussions, the family and health care team agree withdrawal of life sustaining therapies is in the best interest of the patient. After the decision is made to withdraw life sustaining therapies, and before the ventilator is removed or the patient is extubated, the family is provided with the opportunity to donate organs and tissues. Part of consent includes discussion with the family about the possibility that their loved one may not expire within the timeframe needed after the therapies are stopped. To be eligible to donate organs after cardiac death, guidelines stipulate a patient must be pronounced dead by cardio-circulatory criteria (asystolic) 1-2 hours after the ventilator and pharmacological support is removed. The TGLN coordinator in collaboration with the healthcare team will evaluate the patient to determine if the patient is eligible to donate organs. Full mechanical ventilation and pharmacological support are continued up until withdrawal of these life sustaining therapies. Recovery of organs occurs in the operating room. For more information on Donation after Cardiac Death please contact TGLN and request the resource guide for Healthcare Professionals Understanding Organ Donation and After Cardiac Death DCD. When do I call TGLN? Do I call before death? Notification may occur before death if a physician is of the opinion that death is expected by reason of death or injury What is the definition of Expected Death? Expected death includes situations where there is a plan with mechanically ventilated patients to: pronounce death by neurological criteria (brain death) withdraw life sustaining therapy (extubation or removing ventilator) A call before death may also occur as per hospital policy and/or established Clinical Triggers when the patient/family is requesting information about organ and tissue donation RNR Manual 2007 V1-R 31

33 Why is notification of expected death important with potential organ donors? Expected death notification is important to enable TGLN to offer the option of organ donation when eligible The complexity of organ donation with neurological death or after cardiac death requires on-site support for healthcare professionals and families During the initial notification call TGLN will screen for the potential to donate organs by asking if the patient is receiving ventilator support The On-call coordinator will respond on-site if required TGLN Coordinators will participate in the discussion when there is potential to donate organs Assistance for the determination of neurological death is available by contacting the Trillium Gift of Life Network s Provincial Resource Centre at in the Toronto area or toll free number RNR Manual 2007 V1-R 32

34 Appendix 5 Organ and Tissue Donation Options What organs and/or tissues can be donated? Tissue donation Donation after Neurological Death (brain death) Organs Heart Pancreas Lungs Stomach Liver Bowel Kidneys Tissues Heart valves/vessels/pericardium Skin Corneas/eyes Musculoskeletal tissue Organ Donation after Cardiac Death (DCD) Lungs Liver Kidneys Tissue Donation after Cardiac Death (any death) Heart valves/vessels/pericardium Skin Corneas/eyes Musculoskeletal tissue Tissue can be recovered from the body hours after cardio-cirulatory death The criteria for tissue donation are set to minimize the risk of transmitting disease from donor to the recipient Once consent has been obtained, additional serological testing ensures that the possibility of disease transmission is kept to the lowest possible level The donation of bone, heart valves, and skin also requires further microbiological testing to ensure that there are no infectious processes present in the donor s tissue Ocular tissue Donation of ocular tissue involves either removing the whole eye or removing the cornea Eye recovery does not need a sterile environment and is most often done in the morgue Some bruising may occur around the eye orbit, but this can often be corrected at the funeral home using coloring to even skin tone RNR Manual 2007 V1-R 33

35 Eye caps are placed under the eyelid and an open casket funeral is possible Cornea transplants and grafts are needed for congenital, trauma or infectiondamaged corneas to restore and save sight. Scleral tissue can be used for glaucoma, ocular implants, and oculoplastic surgeries Ocular tissue for research and education aids in the investigation of glaucoma, vision physiology, retinoblastoma, and corneal disease Allocation is based on urgent need first, second, by site of donation getting preference, and lastly by random allocation Musculoskeletal tissue Bones and related connective tissues that may be donated and recovered include: arms, legs (including entire knee or ankle joints), and pelvis, plus, menisci and tendon, including ligaments, cartilage and/or fascia lata The bones are removed via surgical incisions and careful reconstruction is carried out post-removal. Families can specify which bones in particular they would like to donate. Open casket funerals are possible with bone donation, however, the location of the incisions should be made clear to the family as it may affect the clothes they choose to dress the body in The recovery takes about 4 hours and requires a sterile operating room Musculoskeletal tissue is used to restore mobility/function and correct deformities. Surgeries include: orthopedic repairs, joint replacements (knee, hip, and ankle), spinal fusions, bone resections related to tumors and fractures; reconstruction of the bladder and ACL repair; and, soft tissue reattachment Allocation is done on an urgent case priority, as well as first come first served Skin Skin donation involves the removal of a paper-thin layer of skin from the back and thighs. There is usually minimal bleeding and the area will only appear reddened, similar to sunburn. A sterile operating room environment is necessary and the procedure takes approximately 2-4 hours. An open casket is possible with skin donation Skin donation is life saving for burn survivors. Recovered skin is used as a temporary burn dressing until the burn victim is able to provide auto grafts. The risk of infection is greatly decreased and the use of skin dressings aid in preparing the wound bed for the autograft. The skin dressings reduce the amount of pain for these individuals who have sustained extensive burns. Skin also serves as a biological bandage for severe abrasions and amputations Skin used in research aids the investigation of necrotizing fascitis, skin preservation and the healing process. Skin for research is only an option when skin is unsuitable for transplant, therefore when skin donation is a possibility, the option for research should be discussed with the family Allocation is done on an urgent case priority, as well as first come first served RNR Manual 2007 V1-R 34

36 Heart Valves The donation of heart valves involves a surgical incision to the chest through which the whole heart is removed, including the vessels and pericardium. The operating room is the preferred recovery location Heart valves are used to repair and maintain cardiac function. Valve repair and replacement is needed for children and adults with cardiac defects. Heart valves and related cardiac tissues recovered are also used for certain types of neurological surgical procedures as well as vascular reconstructive surgeries, such as abdominal aortic aneurysm repair The recovery takes approximately 1 hour and an open casket funeral is possible Allocation is done by national distribution, by site of donation getting preference and first come first served RNR Manual 2007 V1-R 35