Author, Blogger, Educator

Category: Kaiser

Dear Kaiser Permanente – Your Communication Sucks

Kaiser PermanenteDear Kaiser,

I can’t believe I am writing about this again. After all, I thought the support and communication we received during our miscarriage was much better than our experience in 2010 but today, I learned something that is so upsetting and affects more people than just me.

So let’s start from the beginning. When we learned out baby died a few weeks ago, we wanted testing completed. The testing was offered as we have had multiple losses. We struggled with how to get the best “sample” of our baby for testing. In addition to testing, we wanted our baby back to ensure a proper burial or disposition for the baby’s remains. This isn’t something that Kaiser offers, especially for early losses.

By the way, you need to change that. This should be a standard offering for all your patients. I don’t think you realize how many families you are traumatizing by not giving them their options for a final resting place for their baby’s remains. At the very least, you can share with families their baby will be cremated and little about that process. For instance, is the baby cremated with medical waste or with other babies?

With our request, we knew we wanted to bury our baby and we knew about communal burial so we asked for our baby’s remains to be returned to us. No one told us what that process might look like and no one shared with us that our baby would leave the state. This is the information we were given:

How long will it take for tissue to grow?

6-10 days.

When will we receive the results?

In about 10-14 days.

When will we receive the baby’s remains?

They must be turned over to a funeral home and can not be returned to you but within the week your baby’s remains should be released.

It’s been 12 business days since our baby was born and 16 days since our baby was born and I have no results. Granted, they can come in any moment but I decided to call genetics this morning to check on things. I am not happy with what I was told.

First, Sandy shared with me that she is not the one I would call to check on things. Who is? No one told me that.

Second, Sandy shared that the baby was shipped to New Mexico to the lab. Really? That explains why it took so long for our baby’s remains to be released but no one ever shared the baby would leave the state. In 2010, we were informed the baby would be shipped to Texas but that didn’t happen. When I called about the baby’s remains on May 15th, we were told they were in the lab at Lone Tree. I was assured that’s where the baby would be the whole time. My doctor made it sound like the tissue he found for testing (placenta) would be separated from the rest of the baby. Which is it? What takes place here?

Third, Sandy shared that 10-14 days was far from accurate. So I asked her how long this would take and she could not give me an answer. In fact, she said, “I don’t want to give you an exact date because I don’t want to be wrong.” Can’t she tell us anything? We planned a naming and commendation ceremony for this baby. It’s coming up and I don’t want to have to cancel it. So what’s the deal?

I know that a 10 week baby isn’t a priority for you. I know that any early loss for you is really just a “medical event” in your eyes but this was my child, my baby and they are a priority to me. I would want to know where this baby was every step of the way just like I would for any of my older, living children.

It’s a common misconception that loss mothers and families treat their miscarriage as a medical event. A miscarriage is often a devastating and traumatizing event for many women. The medical provider has so much to do with how a woman copes and recovers from this loss. Given the fact that psychiatric care is rarely provided or covered under insurance, women and families are paying thousands out of pocket. Much of that is merely processing how the medical provider supported or rather, didn’t support, the family and provide their options; ALL their options.

So I went to your website to search for a pregnancy loss support group. This is all your website addresses and FYI, you need to change “Moving On” to “Moving Forward.” There is no “moving on” after loss. There are many issues I see what that particular web page on pregnancy loss. I don’t know why someone would write that pregnancy loss would hurt more if the mother has already experienced one. A mother experiencing one for the first time may still hurt tremendously. It’s belittling the first time mom going through a pregnancy loss and making her feel like she doesn’t have the right to grieve.

You offer no support for pregnancy loss. With stillbirth, you mention three websites where families can receive support but nothing for miscarriage which is more common. And another FYI, stillbirthalliance.org is not a support group.

But I digress, we need to return to talking about your lack of communication. What should a family expect then when they want their baby’s remains tested and their baby’s remains back? Where is the baby’s body? Is the placenta separated and sent to the lab and the baby stays in the Kaiser lab? How long does this process take? Why can’t I check on the testing? I want to know if anything is growing. I need to know how long this process is going to take. Isn’t there a typical time that this takes? Who do we call for follow-up? If it’s not genetics, who then?

Why is it that I have to ask all these questions? While I am so grateful for my midwife and the OB that performed the D&C, I do not understand why all these questions are coming up now and the information given was not correct. Don’t you have a form that you can give families that describes this process?

This is something else that needs to change Kaiser. I am stuck now, between canceling a ceremony in honor of my child or just going through with it without a proper name. My child deserves a proper name. This baby doesn’t need to be named Pat or Jean or some other non-sex specific name.

And just a moment ago, I experienced yet another one of your communication fails. Don’t you have focus groups to help make your services better? Ugh! Just help me already. It really doesn’t have to be this hard for families experiencing loss. Start here! Start with my book It’s Not ‘Just’ a Heavy Period; The Miscarriage Handbook. I guarantee it’s better than the nothing I was given after learning my baby died.

– Breaking the silence of First Trimester Miscarriage

Dear Kaiser Permanente: You are Contributing to our Healthcare Crisis

It’s 4pm on Wednesday afternoon, May 6th. My 23 month old is restless in my arms as he awakes from a nap. We both fell asleep in his rocking chair that rainy afternoon. Sleeping with him is a rare treat. We both stretch and make our way down the hall to greet big brother who had just come home from middle school. I stop to use the restroom. While in there, the nightmare began.

As a woman experiencing pregnancy after a loss, this is something no woman in my position wants to experience. Pregnant women in general have a difficult time experiencing this as well but once you have had a loss, the emotional trauma that can appear from this can freeze you right there. This did. I was frozen in time for a moment.

I wiped.

There was blood.

It wasn’t just bright red blood either. There were a few clots. I feel like I want to vomit. I panic in my mind as I am frozen in time just staring at the red tissue. What do I do now? I don’t believe any bleeding in pregnancy is normal. Common…yes…normal…no! It’s a sign but I can’t tell just yet what this means for me and my baby.

I send a quick message to my husband.

4:09pm – “Just started spotting.”

4:10pm – “Bad?”

4:10pm – “It’s bright red with clots.”

4:10pm – “What does that mean?”

4:11pm – “Probably a bad sign.”

In my panic and hysteria, I dial the number Kaiser Permanente requires me to call to reach my doctor. They updated their system to a voice activated system. I don’t think they realize how horrible this is. It delays the call because the system detects any noise and says, “I’m sorry, I didn’t quite understand that.” “Let’s try this again.” Ugh! I try to be quiet and am nearly suffocating my son so he doesn’t make a peep that would delay this call any further.

I finally get through but only to be placed on hold.  The wait seemed like forever. Then she answers. It’s a nurse, who we will call Jennifer (name changed). I have talked with her before. She was the one that talked me through my pain and kept me driving to the hospital when we first discovered I was pregnant. I thought I had an ectopic pregnancy and was bleeding out but it ended up being a bladder infection that I apparently didn’t know I had. WEIRD.

I ask if my midwife can squeeze me in before the end of the day. Jennifer explains that my midwife is not there today.

WHAT? I know her schedule and I know she is supposed to be there.

Jennifer then says that there is no one available to see me. No care providers are there.

I am very confused. It’s 4:15. I asked her what I could do. Her response, “Go to the emergency room.”

I explain that I don’t want to pay to go to the emergency room and that I want to be seen. She relays that it’s 4:30 and that I should have called earlier. I want to scream at her. And I did.

“I am sorry my bleeding didn’t occur earlier in the day so that I could be seen!”

She apologized but it wasn’t good enough for me. I asked her about urgent care options.

“Urgent care won’t see you. They do nothing with pregnancy and they don’t even have an ultrasound machine.”

I begin to explain/yell as gently as I could in my panicked and frustrated state. “This is unacceptable. An emergency room is not an appropriate place for a woman experiencing a miscarriage. Kaiser needs to change this. I am a bereavement doula and I help women through pregnancy loss but where is the person to help me in my time of need? I need an ultrasound, is there anyone there that can help?”

“No,” she says.

I go silent. I can’t speak now. I literally and speechless and numb. This shit can’t be happening again! I can’t be having a miscarriage again and being treated like no one cares. No options for me.

Kaiser Permanente

I hang up on her. Childish yes, but I just have no words. I am already bawling. As I look up, my oldest son is staring down at me as I writhe on the floor. I wasn’t in physical pain, I was in emotional pain. It was so intense I yelled at him to get out of my room. My 23 month old thinks I am playing a game and jumps on my belly. I yell for my older son to come get him and take him away. He does instantly. I think he just sat on the other side of my bedroom door.

I knew he was stressed and sad too. I knew he just wanted to provide support and for me to tell him all would be okay. But I couldn’t give anything to him. I couldn’t give anything to anyone.

I return to my husband’s messages.

“Come home now,” I tell him.

________________________________________________________________________________________________________________

My big concern is that I have an ultrasound the following day anyway. It had been scheduled for weeks. I was supposed to be nearly 10 weeks when I received this ultrasound but my husband is in a class all day that his place of employment already paid for so he can’t miss it. I was faced with going alone (with my 23 month old) to learn of our baby’s demise. The thought brought me to uncontrollable tears.

I can’t do this alone. I struggled with who to ask. It’s hard for me to let anyone in when I am like this. I want someone there, but I don’t want them to see me in this vulnerable state. I notice that I am about to vomit. I hadn’t felt much nausea this pregnancy but now I am struggling to hold back the vomit.

Husband arrives.

I hear him talking to the boys who are now downstairs. Then he makes his way up to our room. The same room where we lost Ruby.

“What do you want to do?” he asks.

I tell him our only option is the emergency room. I could tell he didn’t want to do that either. He asked if I could get someone to go with me tomorrow and I told him that I really didn’t want to do that.

I asked him to see if his mom could either come over tonight and watch the boys so we could go to the ER or if she can go with me tomorrow morning.

He calls her and she can come now. Neither of the options were favorable.

We make the hour drive to the ER. I didn’t want to go to Sky Ridge Medical Center. I haven’t had a good experience with their emergency room. So we opted for St. Joseph’s Hospital. It is also a Catholic hospital so we had some other options should we discover we were losing our baby. There are only three hospitals that are Kaiser affiliated hospitals in the Denver Metro area. Sky Ridge is twenty minutes from our home, St. Joseph’s is an hour, and the other, Good Samaritan, is about an hour and a half north.

We make the drive to St. Joseph’s, all the while I tell my husband I don’t want to go. Deep down I was at peace. I felt like this was a waste of time and money, not only for me, but for the system, for the hospital, and for all those who would be involved in my care.

I felt like I would be a horrible patient, denying all procedures except the ultrasound. I didn’t want to have to fight for the one thing I wanted. I didn’t want to go through a miscarriage with untrained emergency room staff.

We walk through those doors and check in. We were very solemn. We just kind of held each other up. We sat for several hours with no end in sight. As 9pm approached, I knew my breasts would be feeling full and need that release. A release I wasn’t prepared to give in the hospital ER. I tell my husband we are leaving and we head home.

We leave with no more answers than we had earlier that day. Sleep is all I want. I release the milk my son needs and we head to bed for what we know will be a restless night. What would tomorrow bring? I hoped for the best. Deep down I was at peace but I still didn’t know what that peace meant. I still felt like I could feel my baby’s presence. I still tried to remain positive that I would see and hear this baby’s heart in the morning.

***

Kaiser Permanente, there is an easy fix to this. Take one of your after-hours clinics, develop a schedule for OB’s and have them available at the clinic for OB patients. You are a huge system in Colorado. To have your OB patients referred to emergency rooms (who are not equipped for OB patients), you are contributing to the health care crisis and placing a financial burden on your insured. You are taking rooms away from patients who need them. I would recommend the Denver East Kaiser Clinic for this because it’s central.

The Miscarriage Series starts tomorrow. I will be sharing my grief journey with all of you. Please subscribe to my blog!

5/13/15 UPDATE: After this blog posted, Kaiser Permanente contacted me and we are currently working together on a possible solution!!

– Breaking the silence of First Trimester Miscarriage

 

Subscribe to this blog!