MLPI Interviews Tahara Akmal

by Samuel Shareef

So yeah depending on what the role is based on the institutions the chaplains, what they are going to need to know and how they are going to proceed with the family is going to be different depending on what they are going to understand. I don’t know many people that get involved with the approach part, I think that will be very different than if you’re just a chaplain alongside the family, you know, comforting them as they make the decision. So I think its going to look different depending on the situation.

So for example at Hopkins, it was very clear that when it was time for that conversation to happen what we did was we stayed in or spiritual care role and didn’t get involved in like preparation to answer specific questions about organ donation, we were specifically there to support emotionally and spiritually. But we worked alongside Living legacy as well for their questions, it was kind of a tricky role, we had to balance boundaries really well. But I’ve heard of some institutions where the chaplain is actually involved in that conversation. So I would imagine depending on your role its going to impact what you need to know, how you navigate and all that.

So you see a need for chaplains to have this training around these conversations then?

If they are going to deal with the OPO, if theyre going to spend time with family who are making thi s sensitive decision, they should be knowledgeable, they should understand as much as possible what the family is going to hear, what they are going to see, whats going to be asked of them, what that process looks like. 

So which hospital groups do chaplains expect to speak with to brief or debrief regarding organ donation? 

We would, for example if I had organ donation after cardiac death, because that is very different, we would have to contact the ethics committee, and then the ethics committee would get involved to make sure that there wasn’t anything unethical happening in that process. Very different process than, as you know I’m sure, donation after brain death and donation after cardiac death. So ethics committee would be involved, the medical team we always huddle before we knew there was a case, the whole medical team or whoever was involved we huddle maybe one or two times and figure how the family was doing and what we need to know, who are the decision makers things like that. The medical team, ethics committee, I think at one point I think legal got involved for one case, we had a legal involved with that. You know nursing staff, medical staff. I remember this one particular case that was really heart wrenching for all of us. It was a two-year-old girl who was found strangled in the blinds, you know how they put those warnings don’t let kids [play near them]. She was a beautiful two-year-old, her mom found her, with it being a pediatric donation there was an extra layer of care. I remember they let the mother literally camp out in the little girls bed , they didn’t even attempt to move her, they worked around her  I remember when they wheeled her to the OR for the donation, they let the mom stay in there and hold her as long as possible, and I remember we were all in tears because as we were wheeling the baby you could hear the mom singing lullabies to her, it was touching. So there is a lot of people that get involved and you know it’s the disciplinary team, ethics team, legal maybe depending on the circumstances, community clergy.  

Was that description for the brain death or cardiac death?

Either one. And specific ethics committee got involved when there was a donation of the cardiac death because of the circumstances around that, they had to check and double check to make sure we weren’t violating any legal principles. 

 Does the family know of a request for organ donation before the Imam? How do you measure success of the consult with the family? 

I am speaking from when I used to do it at Hopkins, I am not involved here. But what happened was Hopkins recognized the need for a specialized ministry for families that are going to be faced with organ donation, that was determined because often times it was a trauma that occurred that led to a potential opportunity for organ donation so you kiss your loved one goodbye, they go to work, next thing you know you get a call that there was a drowning or there was a fall or something traumatic happened, so we decided we want to have a specialized ministry for people who come in who are going to learn that their loved one was brain dead and needed to do the organ donation process, so they knew there was a special need. So this program the Advanced Chaplain residence, it taught us all about living legacies, opo, the difference between cardiac death, brain death. And then our role was to be an advocate or a spiritual presence for the family, so what that meant was comfort, like I said earlier, making sure they understand what they were being asked or what they were being told. The huddle we had with Living Legacy before was that we knew every step of the way what Living Legacy was going to do. And so we would go in with them, wed sit with the family and then , from what I understand- and you might know more than me- the initial very first one was with the physician if I remember the physician would say okay they already told them the condition of their loved one and then they would bring in Living Legacy and say okay here is Karim from Living legacy he wants to talk to you about an option or something like that. And then that initial meeting was just to see where the family is say a little bit about it and often times they would let the family think about it and come back, and have another conversation. So its very thought out very sensitive how they approach, my understanding is that they want to see what the family knows give them information see who the decision makers are, who are going to be involved, those kind of things. And then the chaplain is the spiritual support for the family and a liaison between living legacy and the family. 

How would you measure success in those engagements?  

I don’t know if we measure success, do you mean as far as our ministry? One thing about ministry in general is that its airy? work and you never know unless there is some particular thing you’re doing you don’t know how the family is impacted unless they tell you or they write and give you a letter. So our goal is to be a support, a spiritual support for the family and be that liaison. How they are affected and how we judge that success I difficult. That’s why there’s not a lot of research on how the success of chaplains are on patients and families, we need more research in that area. But I’m trying to remember specifically how we measured, I can’t remember specifically how we measured results, Legacy did more of that then we did. 

 Where should a pastor turn to for support in situations where information is limited?

Well its very similar to how chaplains are trained to operate with families whether they’re asking a family about organ donation, or a question like why God is letting my child suffer, anything like that. So as chaplains and as being Muslim thinking about this, I think about the ethical value of do no harm. So for me, if someone has a theological question or are struggling with something for me it could be really harmful to give them an answer because what I am taking away from them in my mind is the human autonomy and their God given ability as a  restful jihad? Struggle to think, cry, question and try to come to a place where they can figure things out on their own. If someone asked well why is god allowing my child to die? And I say oh well everybody’s life is limited, if I give them a band-aid a theological answer to me that can be harmful. So, chaplains are taught to let people talk out what their concerns are like if they ask a question about organ donation: I don’t know if I should donate my child’s organs- well what do you think about it? How do you normally get answers to questions like it? You keep talking to them and help them as oppose to saying okay this is what you do. Because when you say this is what you do you take away their ability to think for themselves, to discern, to struggle and think theologically or however they want to think about where they are. We teach chaplains we don’t fix things were alongside people, so I think it would be the same thing with organ donation. Chaplain I’m unsure what my uncle would want? Well what was your uncle like, what did your uncle talk about what kind of person was he, what was his life like? Well he gave a lot to charity. You know you just keep talking to them and let them kind of come to, because a lot of times people kind of know stuff but when they are under stress they are not sure, the stress gets complicated and confusing and we try to just figure out an authentic answer or if they can figure it out we try to connect them with resources. Sometimes they ask straight out chaplain what should I do? What do you think? Then a lot of times well say well there are a lot of different opinions, so well start out with what have you been taught about organ donation? Well I’ve been taught you’re going to hell if you do it, okay so do you want to talk about that? Let them flush it through, flush it out.

 So you’re really trained in how to ask questions and how to listen?

Right this was a conversation we had back at [inaudible] where we were talking about organ donation, this was after your presentation either that same day or another time and one of the members in the group said well if somebody wants a religious answer, a lot of times Muslims want a religious answer, we need to give them a religious answer, and I said well you can but that’s not chaplaincy. It can be apart of chaplaincy and there’s also a way of chaplaincy appareling people to think out loud and think about what they want, and what they have been taught and come up with an answer that way. Imams are taught to give religious answers, lots of times pastors, and that’s normal to give a religious answer but in chaplaincy we are taught differently. 

 Does a chaplain or Imam have an obligation to move a family from rejection to a more contemplative state in their deliberations around organ donation?

Were taught as chaplains to meet people where they are. I meet a family and they say well I’ve always been taught that organ donation is sinful and its haram I don’t want anything to do with it, its not my role in that moment to change their mind. You can help the families and say something like really (can you say more?) you can do that, but you don’t want to be disrespectful where you’re trying to manipulate their mind. 

 Even if they have a false perception?

You can ask more questions like if they have a perception that is wrong, but we have to remember peoples truth is their truth  if somebody in their heart of hearts thinks it’s a sin, and it could be harmful to try and undo that, if someone really thinks Allah is going to punish me if I donate my child’s kidney, that could be a real theological, spiritual struggle. So if I move them to its okay that can cause them spiritual distress. You really want to be respectful of people, and if they tell you where they are, if they are unsure that is different, but if somebody says: I know this is simple and Allah doesn’t like it and I’m not going to do it, then they are very clear. In chaplaincy your taught to meet people where they are so were not there to change people’s minds, we can ask questions, we can ask open-ended questions, be curious and say well tell me more about it or where did you learn that particular understanding about organ donation outlook. And sometimes I would do this: if someone asks me one of the resources I use a lot is the Medical Association of North America, that’s full of resources about organ donation, end of life and I find it very helpful. Then I might ask them would you like their website, so there have been times where I’ve done that. We can do things like that, but you have to be careful that you’re not trying to change people and get them onto your side just because I want them to be on my side. 

 Do you believe a chaplain has an obligation to understand the process of organ donation?

If you’re a hospital chaplain it’s good to know and depending on the chaplain’s role, if they are going to be involved in the procurement agency and they are going to work closely with them then they should know. If like right now for chaplains, our role is when there is a death we show up for every death and the nurse will say I contacted gift of life, they are a candidate or they are not a candidate and then at that point we either say yes or no on the chart under spiritual care, we don’t talk to them , we don’t see them. So, in our case, some information might be helpful if we’re going to talk to the family but it’s not always necessary in all cases. So, I think its going to depend on the hospital, I think it’s good to have the knowledge but not everybody will probably need to use it depending on their role. But it’s always good to have the knowledge.