Speaking to families about organ donation, Part 2

Grayson Burgess works for the organ procurement organization Southwest Transplant Alliance (STA) as one of two in-house coordinators at Children’s and Parkland Memorial Hospital. He is responsible for offering the option of organ donation to families of potential donors and has been specially trained by STA to handle those conversations in a way that best supports families while also increasing the likelihood of consent. I recently spoke to Grayson to get a better understanding of what that involves. This is the second of two parts of that discussion.

Q: I’ve heard about an organ crisis. What does that mean?
A: It means that the need for organ transplants vastly supersedes available organs. That has always been the case, and it continues to be the case today.

Q: What do you say to families to explain the benefit of organ donation?
A: One of the things we tell them is that donation doesn’t just benefit recipients. It also benefits families who choose to donate because they’ll know that their child was able to help someone else live. The way we look at it is that we’re not taking something from the family but instead giving them an opportunity to make a very positive difference in someone else’s life. I also talk to them about how rare of an opportunity it is for them to even have the option to donate.

Q: Why is it so important that there is a formal process for deciding who ends up receiving the organs?
A: It’s important to have a formal process to ensure that everyone is on an equal playing ground. The national rules and regulations for organ allocation are not just applicable for Southwest Transplant Alliance or organ donations at Children’s, they’re applicable for everyone in the United States. And that ensures that all potential transplant patients have an equal opportunity to get an organ.

Q: Then are people not allowed to decide who receives their organs?
A: There is a process where a family can elect to give one of its loved one’s organs to a family member or friend. If there is someone they know personally, we can attempt to place that organ with the designated person before we put the organ on the national list of available organs. That is an acceptable process nationwide called directed donation.

Q: How often does it work out like that?
A: Very, very rarely. The majority of organ transplants come from national waiting lists.

Q: What is the process like for patients waiting on an organ from a national waiting list?
A: That would depend upon that patient’s condition, the organ needed, and the patient’s transplant center. Everyone’s situation, of course, is unique. The constants are that each person’s physicians do a great deal of evaluation before placing a patient on the list, and the wait can be a long one. For some patients, unfortunately, the wait is too long. While 75 people in the U.S. receive life-saving organ transplants each day, approximately 18 people die every day before the organs they need become available. That is why it’s tremendously important to register on the Donate Life Texas registry at http://www.donatelifetexas.org/ and to make sure your family is aware of your decision.

Speaking to families about organ donation, Part 1

Grayson Burgess works for the organ procurement organization Southwest Transplant Alliance (STA) as one of two in-house coordinators at Children’s and Parkland Memorial Hospital. He is responsible for offering the option of organ donation to families of potential donors and has been specially trained by STA to handle those conversations in a way that best supports families while also increasing the likelihood of consent. I recently spoke to Grayson to get a better understanding of what that involves. This is the first of two parts of that discussion.

Q: How does the process of speaking to families begin?
A: A call to STA is required on all patient deaths and all imminent patient deaths. At Children’s, it’s generally the nursing staff, physicians or nurse practitioners who make the call to us. The organ donor protocol begins with a referral of a patient that meets clinical standards for donation, which means the patient is on a ventilator with a neurological injury and missing two or more brain stem reflexes and is absent sedation or hypothermia. We follow these cases as patients are tested for brain death or families have decided to withdraw treatment.

Q: When should STA get the call?
A: It’s important for us to get the early call when a patient meets clinical triggers – before the patient is actually brain dead and before the family begins to discuss withdrawal of treatment. This early involvement is important so we can come on site, take a look at the patient’s chart and assess that patient for donor suitability. That, of course, takes time. And it is very difficult for us to try to assess the patient and talk to the family about organ donation at the same time. We also don’t want to discuss donation with a family unless we are relatively sure that donation is an option for them. Not every patient that we get called about is a candidate for donation. So the time for chart review is critical.

Q: What qualifies a patient as a candidate?
A: Each case is an individual call. There are many variables, and most of those are fairly technical. So, it’s impossible to explain concisely. But the important thing is that we do have staff that are trained and equipped to determine suitability.

Q: How often are people candidates?
A: Rarely. Because potential organ donors must be ventilated, it is only in rare cases that patients meet eligibility. Only then do we discuss the topic of organ donation with families.

Q: How do you broach the topic of organ donation with families?
A: The circumstances of every situation are unique. So, we go about it in different ways. At all hospitals, but at Children’s especially, we work with Social Work, chaplains, Child Life, and with all of the ancillary services as well as the clinical staff to try to determine when the best time would be for our staff to talk with the families. We make sure the needs of each family are met and we talk with them about the person they’ve lost, and who that person was. And we ultimately explain their options and answer all of their questions.

Q: Are there other people in the room besides you and the family?
A: Most of the time we’re accompanied by hospital staff, and they are always welcome to be there. At Children’s particularly, it’s policy that we have a huddle to talk to everyone involved in the care of the patient – to the attending physician, the bedside nurses, the charge nurse, the practitioner, any fellows or residents and any ancillary staff. We want to make sure we touch base with everyone involved in the patient’s care before we talk to the family.

Q: It seems like the conversation with the family would be incredibly difficult. How do you do it?
A: We work with each family individually, depending on where they are in their circumstances. Our staff is specially trained to be able to have those very detailed and meaningful conversations, which is a big part of the reason why we ask that only designated requesters discuss the organ donation option with families.

Q: How often are families receptive to the idea?
A: Exact consent rates vary from year to year, but it’s fair to say that the majority of families that are asked to donate say ‘yes.’ When STA staff is called early and makes the approach, consent is generally obtained 70-80 percent of the time.