When is the Right Time?

I had an experience at work today that I have on a pretty regular basis: I needed to provide education to a healthcare provider.  I am not a doctor and have limited clinical knowledge however, I am regularly tasked with providing education to those who are working bedside in the hospitals; whether nurses, doctors or any other healthcare professionals who I need to talk with.  This is not surprising as donation is a very rare occurrence in the medical field and less than 2% of deaths result in a circumstance that will allow donation to move forward.  The narrow parameters of donation mean that most healthcare professionals rarely see donation happen and many never have.  

My experience was not to explain the process of donation or explain that their patient really is a potential candidate though; it was discussing when its the right time to talk with families about their loved one’s potential for saving others through organ donation.  Now, of course, I have had the new grad fresh out of med school on Fourth of July weekend, who didn’t think it was appropriate because the patient was still intubated and had a heartbeat.  That’s just naïveté with the process, what I’m talking about is far more common and harmful.  

Gatekeeping.

Providers have an obligation to their patients and the families of those patients, to help them understand what is happening and protect them from misunderstanding the situation.  I once told the staff of an ICU that they were doing a phenomenal job caring for the patient’s family, they responded simply “We can’t do anything for the patient any longer, the only one we can care for is the family”. For them: the conversation with the organ services personnel feels harmful to the family. They see a family who is emotional, facing hard decisions and depending on the length of stay, may have an emotional attachment to the family. Through this obligation they can attempt to delay the conversation about organ donation for as long as possible believing that they are protecting the family from a harmful experience until they are fully ready, which is typically after the decision to remove care or the patient has been declared dead by neurological criteria.  These providers are acting not out of ego or conceit but out of an attempt to help a family as best they can. 

The problem is: they aren’t helping.  They are harming.  No one who dedicated their life to helping others wants to hear that their current actions are causing harm to those they are intending to help.  That causes a knee jerk reaction of defense of their current course of action.  Though, the reality is, families would like to hear from organ donation services earlier, often days earlier than what the hospital staff believes is appropriate.  I can’t tell you the number of times I have talked with a family after prying consent from the providers only to have the family members say they have started the funeral planning process. These conversations are not harmful to the family, they are allowing the family to make a fully informed decision about what options are ahead of them.  The process of donating a loved ones organs is time consuming and tv and movies (don’t get me started on that) leads them to believe that the whole process can be coordinated in minutes and that you could transport a deceased patient from a car accident straight to surgery.  Families are not prepared for what the actual process involves and delaying the conversation out of a fear of upsetting a grieving family further, only harms them more.  

These conversations are being held by professionals whose only job is to have these conversations, they are not harming the family.  Now, I wouldn’t believe me either, and anecdotal evidence doesn’t convince me, but peer reviewed studies do (find a sample list at the bottom of this post, (it is by no means an exhaustive list)).
Studies show people who said no to donation have said they would say yes the next time. Families who have been approached for donation have sited the timing of the conversation (too late) as a reason they say no and that they don’t move forward with donation.  Families who have chosen to move forward with donation have talked about how meaningful it was to them.  

Once a family has come to a place of fully accepting their loved one will never return home, that despite Herculean efforts by the hospital staff that their loved one will die, they are exhausted. Asking a family to hang on for 1-3 more days after that is often more than they have the strength for. The fight has left them and with it the adrenaline that was keeping them going for so many hours or days and sometimes weeks of the admission of a person they loved.  They are empty inside and are ready to let it all stop and begin the process of funeral planning and learning what the new normal of not having their loved one alive looks like.  These conversations happening at that point can be heartbreaking, not least because a family who was ready to say goodbye is being asked for more time and they simply can’t give it.  

Yes, I hear all the time, “If you had just talked to us 2 days ago”, what I can’t say is that the hospital told the organ services organization that they were not ready yet.  I also hear from hospital staff regularly that the family is ‘very upset’ and not ready to hear about organ donation.  They are losing someone they love, of course they are upset, that is when it’s the right time.  

These conversations are not about asking for donation to happen but providing information to the family regarding what donation looks like should their person not survive their injuries, what timing looks like, what removing the ventilator looks like and simply offering grief support to the family.  These highly trained individuals who have also dedicated their lives to saving others are not trying to hurt families. 

So, is there a ‘too early’ for these talks? Yes, of course there is. Families who are very hopeful for a recovery and convinced that their loved one will walk out of the hospital are not ready and the organ donation specialists are trained to see those cues and not bring it up if its not appropriate.  They can simply provide grief support to a family and be someone that has the time to hear about how amazing their person is in an environment where no one has time for a really good story. Organ donation specialists are highly trained individuals who have made it their mission to help grieving families find meaning when there isn’t anything left to save their loved one. 

​Families Who Previously Refused Organ Donation Would Agree to Donate in a New Situation: A Cross-sectional Study
Morias, da Silva, Duca, et. al 2012

Grief, Stress, Trauma, and Support During the  Organ Donation Process
Dicks, Burkolter, Jackson, et.al 2020

PARENTAL GRIEF FOLLOWING THE BRAIN DEATH OF A CHILD: DOES CONSENT OR REFUSAL TO ORGAN DONATION AFFECT THEIR GRIEF?
​BELLALI & PAPADATOU 2006

​Organ and tissue donor parents’ positive psychological adjustment to grief and bereavement: practical and ethical implications
Ashkanazi & Guttman 2009