Making the Referral

WHY THE EARLY REFERRAL?
For most hospital staff, calling the donor referral line to report a patient who meets the clinical trigger is a routine part of their patient care and best practice philosophy. The early referral ensures that best practices are in place if and when donation becomes appropriate.
Early referrals can:

  • Prevent withdrawal of care prior to determination of patient’s wishes and potential opportunity for organ donation
  • Provide for OPO and hospital collaboration for adequate physiological support of a donor patient
  • Allow for OPO and hospital partnership to support the wishes of both a patient and a family
  • Prevent deceleration of support prior to declaration of death
  • Prevent inadvertent or inappropriate timing of conversations with families or delivery of the wrong information (i.e., donor designation, medical suitability)
  • Allow OPO staff to share best practices in the management of catastrophically brain injured patients with physicians and nursing staff
  • Allow OPO staff to support hospital staff in delivery of grim prognosis to families and ensure that only trained requestors approach a family about donation
  •  Allow OPO staff sufficient time to adequately prepare and set the framework for positive outcomes for patients, families and hospital staff

MAKING THE (EARLY) REFERRAL
Identify if your patient meets one or more criteria of the clinical trigger (donation should not be mentioned to the family at this point)

  1. A severely brain injured, ventilator-dependent patient with either :
    1. Clinical findings consistent with a Glasgow Coma Score of less than or equal to 5, and/or
    2. A plan to discontinue mechanical or pharmacological support for end of life
  2. A patient who has had comfort care measures ordered
  3. A patient who is made DNR, and death is expected within this hospitalization
  4. If a patient’s family is considering withdrawing support, end of life care options, or has asked about donation specifically
  5. At time of death, even if that patient has been previously referred

Call the donor referral line: 1-800-344-8916 (donation should not be mentioned to the family at this point)

When making the initial referral call, you will be asked to provide the following:

  1. Your name, hospital name, unit, call-back number
  2. Patient name, age, date of birth, gender, race, medical record
  3. Whether the patient has ever been on a ventilator; if not currently, date and time of extubation
  4. Cause of death or admitting diagnosis including any known medical history

*It may be helpful to have the patient’s chart available when you call

If a patient meets initial criteria for organ donation (under the age of 80, currently ventilated with a severe neurological injury) (donation should not be mentioned to the family at this point)

  1. A clinical coordinator from PNTB will call you back (within 10 minutes of your call to the referral line) to further assess the patient. Below you will find a list of example questions that you may be asked in this phone conversation. It is important to have the patient’s chart easily accessible and to be available to have a 5-10 minute phone conversation with the PNTB coordinator. Please refer to the Donor Referral Worksheet for additional details about the information PNTB will need to assess your patient.
    1. What is the patient’s neurological status?
    2. What are the current vital signs, labs, current medications?
    3. What is the past medical history?
    4. Is there a plan for brain death testing?
    5. What is the current plan of care?
    6. What is the family understanding of the events/grim prognosis?
    7. Has donation been mentioned?
    8. A patient’s designation as a donor will be confirmed in this conversation. PNTB staff has access to the state registries and will inform you if your patient has established legal authorization for donation. This legal choice may be made through the DMV (on a driver’s license or state ID card), an advanced directive, living will or donor card. In the event that your patient is a designated donor, PNTB will fax you a copy of the Document of Gift. This is legal documentation authorizing an individual’s consent for donation and should be included as a permanent part of the medical record.Document of Gift example

      For more detailed information about state laws regarding donor designation, please refer to Regulatory and Compliance: donor designation

    9. If we cannot determine a patient’s potential for organ donation during this initial conversation with you, it is our policy to make onsite visits to further investigate medical compatibility for organ donation. If your hospital is located in the Portland/Metropolitan area, we will be onsite within one hour. For hospitals outside of that area, we will be onsite as quickly as possible. (If your hospital is located outside the Portland/Metro area, we may follow the patient over the phone for a day or more until we are able to make an onsite visit.)

When PNTB staff arrive onsite (donation should not be mentioned to the family at this point)

  1. Upon our arrival to your unit, PNTB staff will conduct a more thorough chart review and talk with you in additional detail in order to make a determination of medical potential for organ donation based on the patient’s history and current condition.
  2. If the patient is not medically suitable for organ donation, we will ask that you call the referral line again after the patient expires. If the patient has medical potential to be an organ donor, we will ask to “huddle” with the entire care team, including the physician. In our initial huddle we will confirm with all hospital staff that this patient is a potential donor and outline the anticipated plan of care including medical support of patient, family understanding of patient’s prognosis and appropriate timing for discussion of end of life/donation with the patient’s family.
  3.  Depending on many factors including the prognosis of the patient and the family’s understanding of the circumstances,  if appropriate we may stay onsite to work with the family, and begin donor management. In many cases however, we will continue to follow a patient over a series of days, checking in with the bedside RN each shift, and potentially making onsite visits every few days.

When is it appropriate to talk to a family about donation

Many healthcare providers find that working with grieving families who are facing the loss of a loved one is often the most challenging part of their job. Delivering a grim prognosis or explaining death is never easy, and it is natural to want to cushion the “bad news” with something positive that could offer hope and future health to others. While it may be tempting to couple bad news with information about donation, we know after years of experience and national best practices that talking about donation in the wrong setting or at the wrong time can lead to disastrous consequences for families, hospital staff and potential recipients.

Supporting families through the initial trauma of losing their loved one is our top priority, and our staff is specially trained to be able to have detailed and meaningful conversations about donation. Every family is different, and every donation case is unique. We will work closely with you and rely on your guidance to determine the most appropriate timing to have the donation conversation with a family. Some general guidelines to remember for grieving families:

  • Families experiencing crisis are experiencing psychological trauma. As a result, they have a more limited ability to understand, comprehend, retain information and problem solve. “Dose” a family slowly with information about their loved one’s prognosis and remember that they will likely need to be given the same information several times.
  • Current research suggests that the most important elements of delivering bad news to patients or their families involves the following components: conversation timing, honesty and openness, appropriate attitude, clarity of message, privacy, sympathy and instilling confidence that any questions can and will be answered.
  • We are working with people who are experiencing a traumatic personal tragedy. It is important to remember that how they would “normally” think, or “normally” act may not be possible because for many, stress caused by crisis can suppress abilities to function rationally. While they may “normally” accept donation, their everyday thinking patterns may be compromised. Nothing in their current environment or state of function is “normal.”
  • Families need time to accept that their loved one is not going to survive. More importantly, they need to feel confident that their loved one has, and continues to receive the best medical care with the most opportunity for survival. It is critical that the medical care of patients and potential opportunities for donation are separated in conversations with families.
  • Donation should not be discussed with families without the presence of a trained requestor. Currently, PNTB is the trained requestor for organ donation in all hospitals in the state of Oregon. Not only does this distinction visually represent a separation between medical care and donation options, it ensures families have access to have all information about their opportunities and/or decisions for organ donation. We will partner with hospital staff to have donation conversations with a family when the time is appropriate.

What Should I Say If…

  1. A family has already told me they don’t want donation?
    •  “I certainly respect your feelings. There are some decisions you can make with hospital staff and some you can’t. It is our hospital’s policy that donation is one of the conversations we need you to have directly with the donation agency. While unfortunately I can’t inform the agency of your choice, I can help facilitate that conversation and make sure all of your questions and concerns are addressed.”
  2. A family asks me why someone will be contacting them in the next couple of hours?
    • “Every family in our state has the opportunity to talk directly with a representative from a donation agency about eye and tissue donation. We are committed to ensuring that you have the most accurate information so you can make/support the best choices for your loved one. The donation agencies have a lot of information that we don’t have, and are experts in guiding families through this process. I can assure you they are respectful and equally committed to supporting your loved one and your family. I encourage you to talk with them.”
  3. A family wants their loved one to be a donor, but they aren’t medically suitable?
    • “Our hospital is very supportive of donation, and we are appreciative of your thoughtfulness of others during this time. We have talked with our donation partners who have reviewed (patient’s name) medical history and considered every possible donation option. Unfortunately, because of (exclusion reason), (patient’s name) is not a candidate for donation. I would be happy to get a representative from the donation agency on the phone to talk with you if you have more questions?”
  4. A family asks me about donation before I have called the referral line?
    • Stay focused on the present – coordinators from donation agencies are always available to support families and address questions. More important than knowing donation options, your job is to ensure families feel confident that their loved one is getting the best possible medical care and given the best chance for surviving their injury.
    • If a patient is on life support but is not brain dead (or if test results are pending):  “Right now, we are focused on doing everything we can to offer your loved one the best possible outcome for survival. Before we can know more, we need to wait and see what these tests will show us. We will contact our partners at the donation agency and make sure you have every opportunity to get all of your questions answered.”
    • If a patient is on ventilatory support and test results have confirmed death:  “Our hospital supports donation and we want to make sure all of your questions are answered. We partner with an organization called PNTB – they are the experts in organ donation. I’ll give them a call so I can connect you with them right now to talk to you about donation options.”
    • CALL THE DONOR REFERRAL LINE!!! We are happy to talk to any family – no matter what time!
  5. A family wants to withdraw support now and I haven’t called the referral line, OR the patient is a candidate for donation and there are no coordinators currently onsite?
    • “There are some policies and standards of care that must be completed before we can move forward with withdrawing ventilator support. I will mobilize our support team who will meet with you and talk about this process. We want to make sure that you are informed of all of your options, so you can be as comfortable as possible as you heal in the weeks, months, and years to come. Our team will help with this and should arrive in ____ minutes.”
      • Call the referral line and we will evaluate for donation potential and donor designation
      • Avoid last minute situations by referring when you suspect families may be getting close to electing to withdraw support
  6. A family is in the room when a patient becomes unstable or we are doing brain death testing and asks what is going on?
    • It is important to be honest, but also recognize family’s limited understanding during crisis. “(Patient’s name) blood pressure has dropped and we need to stabilize it see what’s going on.” OR “We suspect that despite all of our best efforts, (patient’s name) brain may be dying. We need to perform some tests and keep his body stable until we’re able to determine exactly what has happened.”
      • Supporting a patient allows time for the family to accept brain death or non survivable injuries and make decisions without pressure – regardless of donation outcomes
      • Remember, brain death testing is diagnostic, and its purpose is not solely for organ donation
      • It is NOT FAIR to talk to a family about donation in this situation!
  7. A family asks me what will happen if s/he is declared brain dead?
    • “If brain death is declared, there will be some additional conversations you will need to have. If and when the time is appropriate, I will introduce you to colleagues who will talk you through the next steps.”
  8. A patient is a registered donor and the family has brought up donation?
    • “(Patient’s name) designated their wish to be an organ and tissue donor. I would like to introduce you to (Donation Agency Representative name) who is here to work with you to fulfill their wishes. S/he will answer all of your questions and support you through this process.”
    • For Eye and Tissue donors only: “(Patient’s name) designated their choice to be a tissue and eye donor through the (DMV, donor registry). A coordinator for the donation agency is going to work with you to fulfill their wishes and answer all of your questions. I could connect you with them by phone now, or if you would prefer, I can have them call you after you are at home and more settled in.”
    • **Remember to call the donor referral line BEFORE this conversation, so you know if your patient is registered or not!
  9. A patient is not a registered donor and I need to get contact information for family to give to the donation agency?
    • “There are a lot of things to think about at this time, and we are committed to supporting you through all of your decisions. I can help you think about an autopsy, and provide some options for funeral homes. I also would like to get a phone number where you can be reached in the next 1-2 hours if there are additional things to cover after we have finished our conversations.”