One of the most important things that patients want to believe is that their healthcare team coordinates their care. Unfortunately, care coordination does not always happen as it should. As a result, patients are frustrated; care is delayed, time is wasted, and the disease progresses.
Case In Point
I was talking to a friend who has metastatic breast cancer. She is going through a variety of treatment options to contain her cancer. Overall, she has done well during her journey. She can work, maintains her projects, and keeps up with family and friends.
She is compliant with taking her meds, getting lab work, and other diagnostic tests that allow her Oncologist to know how she is doing. She is doing all she can to fight the beast, and so far, she is staying one step ahead of the game.
She explained that her Oncologist wanted her to get a port placed as she wants to start her on a new regime that entails IV chemotherapy. Hearing this news told me that the doctor is using all the tools she has to treat my friend. I am grateful.
My friend’s main challenge is poor care coordination by the Oncologist’s office. She has found it hard to get a hold of someone when she has a question. She tries to use the patient portal – but that goes without answers for days.
The latest issue she is facing is getting a date to have a port placed, as the doctor has a new routine she wants to try. She was told when she left the Oncologist’s office, the staff would set the appointment with a surgeon at one of the local hospitals, and someone would call her to schedule the date.
After a week, my friend has not heard from the Surgeon’s office. So she called the office and had to leave a message for the medical assistant to call her back. It took a few days for someone to get back to her. When they did, she was told they could not schedule the port placement as she had not been cleared medically.
My friend was near tears as she felt like she was going in circles. She asked the scheduler who would clear her and what test would she need. The scheduler told her the clearance is usually done by the Oncologist who made the referral as she is following the patient. My friend asked the Surgeon’s office to call the Oncologist’s office and let the staff know what needed to be done to clear the patient so she could have the port placed as soon as possible. The secretary said she would call and get back to her.
My friend was distraught as she had been off chemo for three weeks and knew this was not good as her cancer was probably spreading. When she told me the story, she asked me why the system is so messed up. Why don’t people follow through to make sure my care is coordinated? Why do I have to stay on top of everything”?
I had no reassuring words for her except to say I was sorry. She said this is not your fault…I know it is not my fault, but I am sad to see the system work so poorly as a nurse.
As I thought about the call, I asked myself, how can you have faith in your treatment team when mistakes like this are made? Placing a port is a routine procedure in the oncology world. Why did the staff not know how to do this? Who suffers? The patient. Who looks bad, the Oncologist?
My friend will call tomorrow and talk to the office and find out what her next steps are.
All I can say is that we have to do better…………………………….
Thanks for reading. I look forward to your comments and thoughts, and recommendations.
Have a good week.
Anne, more and more stories like your friend’s are happening every day. For years, I’ve thought care coordination was an oxymoron, but since COVID, with the staff shortages, it has become a nightmarish black hole—-as your friend has sadly experienced. Keep encouraging her to ‘never assume’ that someone is going to help—a bit of a dark take on things, but it will make a difference.
Thanks Betty. I continue to encourage her and keep more up to date….
During my Chemo and Radiation, the cancer center had a great app. Would leave a message on the app and received a call/answer the same day. I sing the cancer center’s praises every day.
Mary Beth, what was the cancer center or the App. I would like to hear more about that. Thanks for commenting.
Unfortunately, this is all to common in complex cases these days. I have been trying to assist a friend who has pancreatic cancer for the second time. She is 84 yet was expected to contact all of her specialists in her care and arrange appointments to get the OK for a new type of chemo to be administered orally. She is very accepting of the odds that she will probably have only a few months of life remaining, but she is active, sharp, and involved with her church and numerous organizations.
There must be a way to have the oncologist’s office to make those appointments for her and then let her know when she can begin care.
Oh Maureen, glad she has you helping her. I will keep her in my prayers.
Dear Anne..such a heavy heart after reading this because these delays are so unnecessary and frustrating. It’s like the left hand does not know what the right hand is doing. Patients and their advocates must be insistent, relentless and downright pushy at times to get their needs met. If it means calling everyday then so be it. It also might mean kicking important issues to the next level. All this can be stressful but necessary for personal survival. Often and sadly, physicians are clueless as to how their offices are being “mis” managed.
Your friend’s experience is unfortunately not that unusual. Both my husband and I have utilized several specialists in the past few years and find that what the MDs want- tests, xrays, ports, etc. – are often out of the control of the ordering physician and left to the patient to coordinate. My husband required having a port inserted, which meant scheduling with the organization that does the largest % of xrays in the area. The port could only be done at one of the facilities. Ended up that it took close to 6 weeks to make that happen. The best advise for patients and families facing these type of issues is to 1] keep a diary/list to stay on track 2] if no success on initial call or two, ask for the clinical mgr to call you back 3] try contacting facility via their website (these comments sometimes go to a marketing person or manager and often provide results. We love to think that providers are in touch, but often they are on different IT platforms that don’t have interoperability.
Also surprised your friend does not have a nurse navigator which are often associated with oncologists.
So many, especially within the geriatric community, really do not know what to do and how to get through to the correct person in a MD’s office, regardless of the discipline and/or one’s technological acuity.
As a CCM, when I had problems, I’d ask to speak with the office manager, who often would get to the root of the problem/issue. Unfortunately, although we are supposed to be in a wonderful country, not only are we short of clinicians, in many states, but also clinicians are short staffed.
I wish I had a magic answer. When an acquaintance utters some medical problems, I informally advocate for them, recommending what they should consider doing, assuming they are capable. Otherwise, I ask if they want, to have a family member contact me and I can guide the family member.
I have worked in 3 states, and all have /had the same problematic issues of untimely medical attention.
If I were younger, I certainly would go the Patient Advocate route, formally.
This is just so SAD! And so common these days. Such a simple fix, if only anyone cared. Whenever I get run over by healthcare, I always open my mouth and say, “This is what happened, that doesn’t work for me … and what if this happened to you or your loved one?” And then I just let silence fill the air. What ever happened to customer service, and health CARE. Lately it’s more like, health “we don’t care”. Pffftttt. Big hugs to your friend. So great she has you to commiserate with.