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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
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We have all heard of Elisabeth Kübler-Ross and the 5 stages of grieving, denial, anger, bargaining, depression, and finally acceptance (also called DABDA). In the context of working with those who are grieving. Education says “We don’t use the five stages anymore”, but really, they never should have been used for grieving. That’s not who she wrote them for. Those five stages were meant for something called anticipatory grief, which is the experience of grief before a loss actually occurs. It’s basically bracing for a death. Kübler-Ross observed people in a unit where patients had terminal diagnoses and her observations were written specifically about how those patients were responding and coping with their own end of life. In that context, perhaps, it’s a cancer diagnosis or congenital heart failure or some other life limiting diagnosis that has been given to a person who thought they were going to live a much longer life.
While these ‘stages’ were never meant to be applied to all experiences of grief and certainly not prescriptive in nature, they resonated with people. The public read these 5 stages and said “Yes, I have had that when grieving and it applies” or “I can imagine going through those stages of grief when I lose a loved one”. In the scientific community we may not use this model any longer as there are many grief theories out there, we however, cannot ignore it or Kübler-Ross’s work just as we cannot ignore Freud when learning about early psychology. Some of the criticism comes from the word stages when what she was describing was ‘experiences’. By the use of the word stages it makes it sound like a linear path through grief instead of the messy rollercoaster of emotions that are experienced. A stage sounds like once experienced and worked through you move on to the next one and so on until you are no longer grieving. That is ridiculous, we can experience deep sadness at the same time we are experiencing acceptance of the loss while bargaining with a higher power for a different reality and anger that we can’t change that the loss happened. Beyond that, there will never be a day when you are no longer grieving. You will never wake up one day and think, “I just don’t miss that person anymore, I’m done grieving”. This should have never been ascribed to what a person goes through after they have experienced a loss of a loved one. These stages don’t fit that experience, and we shouldn’t try and force them to, all grief is not the same and the act of grieving your own life that is coming to an end prematurely is not the same as grieving a life lost of someone you loved. Why then did Kübler-Ross’s book On Death and Dying (1969) become so popular? Because these stages resonate with people, a non-grieving person can imagine doing these things if they lost someone they loved, however, when it really happens there is no bargaining, there is no denial, accepting that they have died happens whether you want to or not upon seeing their body (a subject I will explore further in another post). A person who is not grieving can imagine refusing to accept that their person has died and shaking their fist at the sky and screaming at the universe, they can imagine begging whatever higher power they ascribe to, to please bring them back before slipping into a depression until finally acceptance of the loss comes and they find healing. Those of us who work with the grieving and have experienced significant losses ourselves know, that’s just not how it goes. Limitations of this model are that the word stages makes it seem like it is a linear progression through these emotions, perhaps like a bell curve starting with a low level of denial, building into anger and peaking at bargaining with your maker to finally slipping down the other side of the bell into depression and finally bottoming out into acceptance. Here’s the thing though, grief isn’t linear. It’s chaotic and messy, it doesn’t fit into neat stages, but is instead like trying to traverse a mine field that you have no idea how far until relative safety and then, sometimes when you think you are in a safe zone you take a confident step only to find a bomb. To begin, let’s call the 5 stages of grief, ‘some of the experiences of anticipatory grief’. There are many experiences that happen to those who have been given a terminal diagnosis and not all of them are negative. I would also like to separate these experiences into two categories, the fight experiences and the peace experiences. Denial, anger and bargaining would be within the fight experiences while depression and acceptance are part of the peace experiences. There is a model of grief that was designed for those who were grieving after a loss called the dual process model (Stroebe & Schute), in this model it acknowledges that there is deep sadness at times, where a person is unable to to do much but think about their personal loss and how it impacts their life, and then there is the process of continuing with the act of living, finding meaning in life again. This fight/peace experience is much like that, where people are oscillating between fighting for their own life and finding peace with their upcoming death. At times you are raging against the unfairness of dying with so much left to be done and at times you acknowledge that there is nothing to change it and instead enjoy what is left with the people you love. As people progress in their illness, they are less in the fight experience and more in the peace experience as is expected. I believe this was the reason that Kübler-Ross put her stages in the order she did, because most people are not accepting of the diagnosis in the beginning as well as most people are not denying that they are dying as they approach death. While the order is intentional, she did not intend for them to be fully linear, after denial comes anger once you are done being angry you start bargaining. If given much thought at all, it is clear that a person who is denying they are dying is both angry and bargaining, its all at once not stages, just as a person can be both depressed and accepting. People are complex, and grief more so. There is no subscription of emotions that a person will experience in any semblance of predictable order as they are dying or as they are grieving. Stop using the 5 stages as a guideline of if you are grieving ‘right’ or expecting your grieving patient to experience those stages, it was not written for those who are grieving a loss. Have you ever walked up to someone who is grieving and all you can think to say is "How are you doing?" and then the person says "How do you think? Terrible!"? Or maybe you were the person hurting and, in your head, you screamed at them about how awful everything is now and what a stupid question to ask. Even when we say it in our most empathetic tones and cadence, it's received poorly.
We say, "How are you doing?" because it's part of our everyday speech and when someone is in obvious pain it's hard to think of what we should be saying. This isn't an everyday situation though and while you know you mean it in the most empathetic and caring way possible, to the ears of the person who is hurt, you are asking them to finish the normal script and they can't, or if they do it's a lie said in a flat tone that communicates how not 'fine' they are. In most cases in everyday interactions the answer to the question of "How are you?" is "Good" or "Fine" and when a person clearly can't answer in that normal script regardless of if they know that's not how you mean it, it feels like an accusation of not 'doing fine'. Instead, try "How are you coping?", you are acknowledging that they are not expected to be okay, good, or fine and it communicates that you care while also asking what you really want to know. Are they managing this tragedy? Is there something that they need? Is there something that you can help with? It takes practice to change what you say, and you will forget on occasion and possibly be met with harsh tones, glares or flat answers, but stay calm, apologize for being insensitive, and reword the question to reflect what you are really asking. Asking about coping validates the difficulty of the situation and takes all the pressure off the individual to be okay, it isn't just a script that has an expected answer, and further, it promotes a more detailed answer than one word. In my experience, I have seen a physical deflation, like they have been waiting to defend their mental health but find that they are suddenly validated by doing well. That what is happening is really hard and all they can be expected to do is try to cope from one minute to the next. All the pressure to be 'doing good' or 'fine' is eliminated and they feel comforted by your concern. The second thing we tend to say after "How are you doing?" is "Let me know if there is anything I can do to help", so instead of providing comfort you have suggested that the person should be 'good' and then given them responsibilities to help you feel like you are being a good friend. By asking about coping can lead to a conversation about the challenges that they are struggling with and help you to identify ways that you can help. The responsibility for delegating tasks has been removed, as they can just vent how difficult the situation is and you can identify areas that need assistance during that conversation and simply offer to take the task off their list of things to manage. If you are very close, it can be things like making sure the laundry is done at home and the person has clean clothes to change into. Or if you are not as close try providing a gift card to a local restaurant so that dinner is taken care of for a day or two. Listening to the answer of how they are coping can identify what really needs attention instead of closing off communication from the start with "How are you doing?" “Sign here. You’re going to inpatient psych.”
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AuthorMy name is Abby, my life has been touched many times by loss and grief. This life has led me to helping others navigate their own grief. I have become a INELDA trained End Of Life Doula and I work in family services for an organ procurement organization (organ donation) I hold a bachelors in psychology as well as a masters in thanatology (the study of grief and bereavement) I am not a professional counselor or psychologist and all advice given should be treated as advice from a friend. Archives
December 2025
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