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Lack of empathy and time from the medical community

I had worked in healthcare for over 40 years and our team goals were to always keep a patient educated on their health issue, what to expect from testing, before, during and afterward, and displaying some empathy and understanding as we knew living with a disease can be difficult to deal with mentally and emotionally, not just physically. Because of how my healthcare team was trained to interact with our patients, after retirement, I expected the same when I was diagnosed with a high degree of probability that I have prostate cancer. After having 2 MRIs and now waiting for an appointment for an MRI biopsy, I have to say I am less than impressed with those I have interacted with, and even angry with how my Doctors are relaying information to me, not "listening" to me and talking to me in a dismissive way, or even asking what my state of mind is. It's like I am on their conveyor belt, moving me from appointment to appointment, Doctor to Doctor, and test to test. They tell me to not assume Internet information is correct or it may not be current, yet they can't take enough time to actually have a discussion and answer my questions. I get 15 to 20 minutes to "chat" and then wait for 2-3 months before I can get a follow-up appointment. My primary care Doctor told me many Doctors in my area retired early due to exhaustion from COVID overload, which I understand and empathize with, and many Doctors in my area are no longer accepting new patients because their appointment schedules are already backlogged by several months. I have no recourse if I wanted to change Doctors. Sometimes I feel betrayed by my former constituents, and definitely angry and very frustrated. That is why I am joining this community - I just need a safe place to vent. I don't know what to expect or maybe learn from everyone else out there, but I thought it'd be in my best interest to reach out to a community that may have had similar experiences. I live alone and have no family. I am generally very strong, reasonably smart, and greatly enjoy my independence, but I am confronting a range of emotions unfamiliar to me as I have also enjoyed good health until recently. Don't get me wrong - medicine has made huge advances in diagnosing and treating disease which I am VERY grateful for, but somewhere along the line, probably due to the pandemic, interpersonal skills have gone by the wayside, at least from my experiences so far. I wish everyone better luck !

  1. Yes, yes and yes! I am a pelvic floor physical therapist who recently moved from New Jersey to Florida. While the weather is fantastic here, the healthcare leaves something to be desired.


    When I lived up North, I was very selective with doctors and got great care (though I had to be my own fierce advocate). Here in Florida, however, I not only have experienced substandard care, but have witnessed my patients get the same. It is incredibly frustrating. And it doesn't seem to matter if a person has health insurance or not.


    Practitioners are limited in the time they can spend with patients and I understand that. Yet lack of time with patients should not equal lack of quality in care. I make certain that the time I have with my patients is packed full of "content" for them to take with them when they walk out the door.


    I will add that COVID has accelerated burnout for many people working in healthcare. This has worsened quality of care and empathy from practitioners, as many of them have never grieved their own losses and are forced to continue to work to make a living.


    But everything you said in this forum statement is true. I have retained my practitioners from NJ for Telehealth, and for everything else I need in person from a medical standpoint in Florida, I simply take deep breaths while sitting in the waiting room and do as much personal research as possible. Hang in there!


    Becca Ironside, Team Member

    1. Im very grateful for your articles, Becca, and wish I’d had someone like you to tell me how to prepare more fully for my prostatectomy. Pelvic floor PT has been essential to my recovery, but I only learned about it a year after my operation from sites like these.


      Is there a way we can create a hard-copy brochure to send to the staff who interact with prostate cancer patients (nurse-navigators or PAs, for example) about how to prepare one's self actively for surgery or radiation? The staff are often too medically oriented and place less value on one's sexual life, diet, exercise, sense of masculinity, and—yes—pelvic floor PT. If they can’t do a good job with this, at least they can hand a new patient a brochure and put them in touch with a group like Prostatecancer.net.


      I do feel it’s time for some direct action on our part, and I’d like to help.

    2. I truly wish there was something that we could issue to practitioners about prostate health and a more comprehensive approach to how to prepare for prostate cancer treatment and the importance of pelvic floor PT.


      Sadly, most hospital networks in the United States will not accept outside resources to be included in their cancer protocols. And smaller urology groups would need to be marketed to directly. It is an enormous and grass roots undertaking.


      I wish this were not so and I agree, so much more work needs to be done to support those with prostate cancer.


      Becca Ironside, Moderator

  2. Thanks for your response Becca. I guess this is why there are forums like this one. I appreciate you reaching out to me. It is actually reassuring for me to know that someone else within the medical community is noticing what I am, and that I am simply not being empathetic enough. I managed all medical imaging and the radiation therapy department during the last 30 years of my work life in a faith-based San Franciso hospital. Respect and compassion was insisted upon, so the lack of it is easily noticed.


    I currently live in Palm Springs, and we have hospitals that are quick to tout their positive outcomes and awards - which is all truly positive and encouraging - as long as a patient can get into the right system to begin with, and then find Doctors or other providers that are a "good fit". I made good choices when I first moved here, and my PCP is definitely a good fit for me, but even he has had limitations with what he can do to help me with the stresses I am feeling. Due to the pandemic, the Urologists he had confidence in and made many referrals to have retired or simply closed their practices. The hospital has made its apologies and have reassured me they are actively trying to recruit new and/or additional staff, which I appreciated hearing. I also know everyone within healthcare is still dealing with fallout from the pandemic on many levels and remain in a recovery stage. My heart goes out to them. But knowing all that, and at the risk of sounding selfish, I still have needs and I am feeling disgruntled and anxious.


    I have learned that I also need to be persistent and be my own advocate, accepting the care that is presently available to me, but always keeping an eye out for a better situation. Due to the shortage of Physicians here I have had to wait 2 weeks just to get the results on my MRIs x2 (interpreted and typed) and then weeks to get a f/u appointment with my Urologist to see what the next step is. This diagnostic process started in April. I can easily occupy my mind with other things than my health during the day, but bedtime has been occasionally difficult due to feelings that I cannot always control, and I have grown impatient.


    What I found almost humorous is that the Urology office allows patients to do on-line pre-check in. As part of that process, they have a voluntary depression/anxiety analysis form to complete. Evidently they've also lost their reading skills too. A waste of effort on my part. Looks good on paper though !


    I think we both feel that choosing healthcare as a profession is/was a blessing because we know more about health than the average person on the street. The specialties have many rewards, and we're probably better equipped to take care of ourselves. But that also means we know there are better alternatives to what we are being offered 😀


    I wish the best for both of us and the many patients who also need to vent !


    ............Ron

    1. I agree with all of this! I am so sorry to hear what you are enduring. The sleepless nights being the hardest of all.


      Stay in touch so I can hear how you are faring!


      Becca Ironside, Moderator

  3. Well, my first post was in October and I still haven't been scheduled for a biopsy. Had a consultation with a Radiologist but still waiting for a time and date. May have to wait until after the holidays but not sure. So I live daily with my xanax and my TV remote.

    1. As I understand it, the clinical pathway for treatment requires a Gleason score, so everything else waits until a pathological sample is taken - the Bx is a requirement no matter how long it may take to get unto someone's MRI schedule, and I do need MRI guidance due to the locations of one of the two lesions previously found.

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