I’m sure there are plenty of thoughts from the point of view of the medical professionals on this and most certainly I do realize that they are at work when this is all happening and have plenty to think about regarding the patient.
However, following my family member’s surgery, I want to feel welcome for a brief visit in her hospital room. Mom’s most recent surgeon (phenomenal in so many ways: Knowledge, Skills, Ability to Communicate, and Bedside Manner toward both the patient and the family members) spoke to me around 6 PM last evening. After 7 PM I asked for her room number because I live just under an hour away from the big hospital and I was ready to go home after seeing her. I approached the front desk staff member in the surgical waiting room and she looked up the room number for me and called the unit ahead. They shared that it’s a shift change and encouraged me not to come until 7:30 PM which I did and I was still alone in a dark hospital room when I arrived because Mom wasn’t there yet.
Two nurses in the hallway were busy and ifnired me until I approached them. There was no or ask the desk and I asked if I could go to Mon’s room and the one nurse kindly and easily waved me on.
But when my mom arrived in her room, the gentleman transporting her by pushing her gurney did not make eye contact with me or speak to me. Worse yet the bedside nurse came in and began acting like I was not even there. The transfer to her hospital bed went smoothly but neither would look at me until I thanked them several times over and then politely explained that I would not be staying long. I also, in an easy-going way apologized when I got in her way and showed her the four items I was leaving behind for Mom. She was pleasant enough and answered me.
But I wanted to be greeted. I wanted the staff to introduce themselves to me and to make me feel welcome. It wasn’t the ED at 4 AM or something like that, it was the start of a shift, and even if it was it would go a long way to greet and welcome the loved ones of people who had surgery.
Hospital Hint: Who’s the Assigned Case Manager? Find out early.
So this one is tricky because at a smaller hospital like the one where my Mom has been treated close to our home, a social worker is not assigned every time and they don’t always stay with a patient for long. Some are obviously off on certain days and when your loved one is in the hospital for multiple weeks or month-long stays with revolving door readmits, you tend to meet multiple social workers per stay. I’m told that not every patient needs to be assigned a social worker as some, as in the case of my husband, have smooth procedures and head home the same day or shortly thereafter. Others are not medically complex and brief monitoring followed by recovery at home is an easy choice.
However, in situations of medical complexity, like Mom’s, we began to catch on to the fact that she was consistently assigned a social worker. “Great!” you might say, “Finally someone to advocate for the patient and family!” It’s a social worker, someone who surely studied for a helping profession and likely had a class or two dealing with Family Systems. Sadly, in our repetitive experience, support for the patient and family is simply not the main job (and I would most definitely question whether it’s any of the job). Giving some the benefit of the doubt, this certainly could be because of the size of their caseload or because of the responsibilities they are assigned by their bosses, or by the rules of managed care. Whatever the case may be, you will be hard-pressed to find warmth or guidance from your hospital case worker/social worker/case manager. The titles can vary widely, even at one facility, as (according to various hospital staff) sometimes it depends on how long one has worked there or on some of their specific responsibilities. In late January around the time of Mom’s 4th or 5th admission (following the initial emergent surgery in mid-October) I spotted her new case manager’s title “Social Services Specialist” in the portal. And due to a number of mind-blowing interactions I had already participated in (particularly while communicating with the surgical team), my newly discovered and well-broken-in sense of paranoia, sent me texting multiple nurse friends who work for this hospital begging them to find out the significance of this title for me. My sleep-deprived, overextended, Sandwiched self immediately wondered if we were now assigned someone specializing in “social services” because of any number of blunders I may have made as a caregiver and advocate. Were we being investigated now?! I was quickly reassured that we were the proud borrowers of yet another run-of-the-mill case manager.
Tip: Sometimes you can find the name of the assigned social worker with the rest of the treatment team listed in the hospital’s portal in your loved one’s online chart, but in our experience, it’s not always very soon after admission. And if you think there is something or someone who is going to point you in the direction of taking a peek there to find who is assigned to your person’s care, you’re mistaken. And if you dare to imagine there might be a phone number in your loved one’s portal with a direct extension where you might leave a message for that individual, Nope.
There are cheerful, lovely individuals whose main job is to push a computer on a cart around the ED and gather insurance info, patient info, and to get important documents signed. However, they Do Not provide guidance about much of anything related to what happens when one is admitted and how to find out who the treatment team is and what everyone’s job is (and is not), how to ask relevant questions and who to ask. and who can hear, and save in the system, a brief explanation of who the support system consists of and what the support person might want to share about the patient’s situation (including but not limited to who’s part of the patient’s village or even some relevant preferences or quirks that might impact treatment). No one is asking these questions that we are aware of and there is plenty of resistance to listening when the family member or advocate wants to share something of note….prepare to say it at rapid speed and for most to ignore such details.
What does the case worker/case manager/social worker/social services specialist do? Well, friends, it seems the hospital has assigned them aftercare planning and essentially aftercare planning only. I learned to dread the call from them because it meant that my Mom’s EDD (Estimated Date of Discharge) was imminent and that if we did not quickly choose from a small, unappealing list of aftercare options (more details to come in one or more future blog posts on Aftercare with Medicare) they would get cranky with us and begin asserting that we must call a third party and appeal to Medicare for additional days (something I will also detail in an upcoming post). I believe they likely do some advocating for the patient by phone and online as they seek a bed at a rehab facility or access to specialized follow-up care. However, the patient and family rarely are privy to much except for one or more no-nonsense chats about when the patient is getting out and where to.
If you imagined that your loved one’s case worker/social worker/case manager, social services specialist will know your loved one’s chart well, they might, and may use that knowledge to guide and support the patient and family on their journey to next steps, but don’t get your hopes up. I will say that it probably has not helped that I am often advocating for the hospital providers, especially the surgeons, to find solutions for Mom’s ongoing post-surgical complications and that we are often coming from a place of questioning the surgical or medical team’s definition of medical stability.
I will also add that we had one experience so far with a social worker at a larger hospital, where they may have even more patients on their caseload, who knows? He was polite and spent a few minutes with us after I asked the bedside nurse to call him. I can’t help but wonder if he would have stopped by at all without a specific request. He wrote down the name of the home health team that we had been working with and when I left an important message later in the day he never called me back at all. The bedside nurse told us home health was set up, I didn’t push because I do not want to rock the boat with these new surgeons, and two days into being home I called the home health team because we hadn’t heard from anyone and they informed me that they rejected the referral (a story for another day) and now I am working on connecting with another home health agency on my own. The small hospital’s communication and follow-through regarding aftercare planning has proven to be far better than this experience with the larger hospital’s social worker. In his defense though, it sounds like the equivalent of the RN case manager at the larger hospital (I believe his title was Care Coordinator) may have been in charge of aftercare. This is our first experience going without aftercare as the small hospital always secured it.
This is unfortunately not where you will find a well-rounded Patient Advocate and in my ongoing quest for someone to partner with me at the hospital to advocate for my mom, I learned that there is someone with clinical training, the Case Management RN. Spoiler alert, our experience with them led to some disappointment as well, but I’ll tell you tomorrow why the Case Management RN got my phone call most mornings as I sought to advocate for my Mom that day.
Sandwiched Support 