Cancer, Chemo or Old Age?
INTERESTING STUFF – 3 MAY 2019

Getting Doctors to Listen

Reader comments on Wednesday's blog post, Cancer, Chemo or Old Age?, turned it into a much more important story that it could otherwise be. There are at least half a dozen topics those comment suggest but let's go with ageism in healthcare today.

Ageism among health care providers is a well-known phenomenon. As reported at the website of the American Society of Aging,

”The geriatrician and writer Dr. Louise Aronson (2015) describes a disturbing example of explicit ageism in which a surgeon asks the medical student observing his case what specialty she is thinking of pursuing.

“When she answers, 'Geriatrics,' the surgeon immediately begins mimicking an older adult complaining about constipation in a high-pitched whine.”

You know, if you do things like that often enough, they become commonplace and people soon believe them. But of the many ways some physicians and other healthcare workers can and do demean elders, ignoring them is near the top.

Another Dee had this to say on Wednesday's post:

”I may not be correct, and I don't think I am paranoid, but I really think that they see my age on the chart, the white hair on my head, and not the human being seated in front of them.”

She's not wrong. I know. I've been there.

Six months or so before my pancreatic cancer diagnosis, I went to my then primary care physician about a bunch of seemingly unrelated symptoms including neon-orange urine. It practically glowed in the dark, so you'd think that alone would alert a doctor.

But noooo. He kept typing at his computer as I answered his questions and after seven minutes of this, he got up to leave saying something close to, “I'm sure it's a simple virus. You'll be fine soon.” And he left the room.

Huh? I fired him that day and began my search for a more attentive doctor.

Several TGB readers didn't use the word “ageism” in their comments but it is certainly what they are talking about. Seventy-two-year-old Judith Darin, an RN who has worked as a hospice nurse and now works at a skilled nursing facility that is, she says, the best place of its kind she has seen.

”What Dee describes about her treatment,” continues Judith, “and how medical people view her, is a reality. And I have been guilty of thinking about patients (and elderly folks in general) in the way that Dee describes.

“But that has changed. As I get to know each of my patients as individuals, and consider all they have been through, and learn to LISTEN, my perceptions have changed.

“When I am in my own doctor's office, if I don't feel like I am being heard and respected, I ask the staff to stop what they are doing, and to listen to me. I am an RN and try to care for my patients in a holistic way, but now I am also a woman in my 70s with white hair.”

Nancy Hutto left this story:

”My sister, who is 84, recently went to the emergency room with heartburn and back and chest pain, after I made the call to 911. The excellent doctors there found an artery 95 percent blocked and inserted a stent.

“This was after a visit 2 weeks earlier to her cardiologist and several months of increasingly debilitating loss of energy, shortness of breath, and risk factors such as diabetes and an autoimmune disease requiring daily prednisone.

“We have excellent health care in the Seattle area but we still need to be squeaky wheels in advocating for ourselves. It is also helpful to have an advocate who will listen and make the decision that an emergency is in progress, even at the risk of a false alarm.”

I'm not up these days for starting a medical ageism protest organization but we can stand up for ourselves. I deliberately decided to do that two years ago when I found my new doctor(s) at Oregon Health & Science University (OHSU).

Since then, I've made it a point to find out about the doctors, nurses, medical assistants, schedulers, etc. who are part of my treatment team. We exchange some personal information – whether we have kids, where we live, what we like to do when we're not working and more.

Maybe in the beginning it was a tactic to be sure I get the care I need and am not overlooked. But now it's real. We've become a certain kind of friend to one another.

We joke around and we talk about serious health issues too. Occasionally, even politics.

Some of them read TimeGoesBy so that comes up now and then. They talk about how they deal with the inevitable outcome of treating mostly old people who have a deadly disease. Without ever being sappy, they are all remarkably cheerful and likable people.

What has happened over two years is that we have come to dwell together in that middle ground between service people and friends. They have expertise I don't have – I need them for their professional skills – and I also need their kindness and understanding.

Maybe they need that too and we're both gaining from what I see now as our heartfelt attention to one another.

God knows I could be wrong but I believe that taking the time to get to know these terrific, accomplished people more personally, allows them to see me, the person, and not just my bald head.



Comments

I'm chuckling because your posting makes it abundantly clear, Ronni, that there is a physician suited to each of us - not necessarily the same one! I want a down-to-business healthcare person who doesn't care a fig about how my granddaughter is "doing".

OTOH: When in my early 40s, at which time it became feasible, I stopped going to male physicians who, as far as my experience could show, did not take female patients seriously. I've found that, in general, the female physicians whom I've since seen actually listen to me and credit the me with having a bit of experience in observing my own body.

To each her own. You did extremely well in recognizing the need to fire your primary care physician a couple of years ago!

“... taking the time to get to know ... people ... allows them to see me, the person ...”

— and me to see them, as individuals. My experience is that most everyone wants this same visibility and specialness acknowledged. Akin to watering a parched flower and soon seeing it straighten and bloom.

Ronni - Your confrontation with that physician is now typical. I am not yet sure what the outside influence is (other than ageism); perhaps the evolutionary changes in the Medicare and Insurance have affected some.

Just yesterday, after a predetermined waiting period, I showed up on time at my Pulmonary Specialist. A physician I have used for the last five years.

I paid my $10 copay and an additional $98 because I had not reached my deductible.

Waited in my queue for about twenty minutes, then was prompted to go into my 'cell', have the nurse take my BP, and wait some more.

My good friend the physician shows up, admits the nurse's reading was inaccurate (blamed the machine she used) and retook the BP.

He then asked two questions: Is my pill list still correct? When will I do my Sleep Study?

Questions were answered - and he opened the door and vanished!! Five minutes, BINGO BANGO, and out the door astonished at the quality of care offered in 2019.

Similar situations like this one have happened to me with two other specialists in this NE Florida community.

Is now the era of Wally World healthcare I wonder?

I'm grumpy today .. and tired and sick. I've blocked the name of my oncologist - the 4th or 5th I've had. I do not 'present' my cancer in the usual ways so they tell me ALL my symptoms are in my head. And tho' it's a slow growing cancer, the BO (blocked oncologist) said if it were active (he did no tests nor did he examine me on last visit) said I'd be dead. No, I've researched. I'll just be as miserable.

It's ageism, it's gender, it's weight (I'm not thin) and the biases all come out when you need a good doc. Thank goddesses that my PCP is superb and listens and intervenes,not always successfully.

I've instructed my spouse to have an autopsy done when I die .. just for the sake of knowing what killed me.

I lucked into a woman internist whose specialty is geriatrics, she replaced my former doctor when she left. She is caring and thorough. I live in a small town that had two hospitals with clinics but one completely closed two years ago and the selection of doctors is much smaller. My really great pulmonologist left and the pulmonary department is no more with just one remaining staff pulmonologist of the "don't talk just do as I tell you variety." Now I see a woman pulmonologist I like her but she is 70 miles away in a larger city. Fortunately my beloved daughter-in-law takes me there for my visits and likes to come in with me and ask the things I forget. This new MD turned out to be a friend of my internist. Just dumb luck to have these two docs. Gives me nightmares about either of them leaving.

I try to view a visit to the doc as a visit with.............hmmm, well, a sort of friend who knows more than I about this certain issue. And, nowadays, I have pretty good energy for that sort of interaction. Docs and other humans like energy, are attracted to it. Well, so good for me...............right now. But who's to know, I might lose that ability, it's happened in the past, being too ill to do more than shuffle in and try to make sense. It's kind of hard to project entitlement when truly ill.

Salinda makes a good point, if the dr can see you when you are feeling well, and you have energy and vitality, then when you are sick and lacking that vitality, the dr knows it.

This has happened with two of my drs. I hate going to the dr except when ill, but i know I should show up when feeling good just so they know when I'm really sick and need their care and attention.

I am feeling so fortunate to have my current PCP. I saw him this week and, as usual, had a great appointment. He spends something like 25 minutes with me every time. It gives us plenty of time to run through my list of questions, and then move on to his review of recent test results. We spend a few minutes talking generally about my health issues and things that might be helpful to me. He is probably 20-25 years younger than I am but he shows no signs whatsoever that he sees me as an old woman (I'm 68 with totally grey hair). I definitely agree with Salinda, and I too wonder whether his attitude will change when I'm not able to project a youthful demeanor.

Just yesterday I saw a friend for the first time in months. I asked about her family. Her husband had been to his doctor about his foot neuropathy, with one foot recently becoming swollen and very painful. The doc told him it was just a part of growing old and he’d have to learn to live with it!
He had a difficult time finding a new doc, as there is a scarcity in his community. He did find a new one, who ordered tests which revealed gout. Now he is getting the treatment he needs and is much improved, after living in agony for months. The moral of this story—if doctors dismiss you—don’t accept it, find someone new! You are not “making stuff up” to get attention—you most likely have a real issue that needs to be addressed, and you have a right to being treated like any other patient presenting symptoms.
Sometimes I think we need to form picket lines outside of certain doctor offices to bring attention to this issue!

Sounds like I'm the exception in having both a primary care doctor and an oncologist whom I love and respect. (If I didn't feel that way I'd be looking for another doctor.) And ditto my ophthalmologist. All talk with me as if I'm the only patient they have to see that day. All act as if we are partners working together to solve a problem. All ask about my activities and family. My only concern is outliving them or seeing them move away and having to find a new doctor I like as well. I think the long-term relationships are important so they know me as a person and not just their next case, and so I know them as a trusted friend and ally.

I had back surgery in 2017, and recently went back to my neurologist with increasing pain on the other side of my back that feels nerve related.

I was his last appointment of the day, and it was clear I was keeping him from something he'd rather be doing. He kept cutting me off mid-sentence, then told me i am "muscularly de-conditioned." Hmm. Out-of shape he was trying to say? Tell that to the 4x4's, bales of straw, bags of mulch, and top soil I've been hauling all over my property since February.

Musculary-de-conditioning" must have been the $89 Old Person Surcharge they hit me for on the "your insurance won't pay our outrageous rates so you have to" bill.

I don't want to play eeney-meenie with a half dozen new back docs. I used to like the guy. Guess I should be happy I have access to 6 to pick from that aren't in the same conglomerate.

I’m glad you had a good experience at OHSU. Our friend had Whipple surgery there and was sent home to Bend with no follow-up care and no returned phone calls or emails. Two months later he was back in the hospital being treated for an E. coli infection from the original surgery. By the time it was cleared up, his cancer had spread and he died a few months later. Another friend was referred to the same surgeon, and she couldn’t stand him. So she went up to University of Washington, where she’ll have the Whipple procedure in a few weeks.

I grow increasingly concerned about living in a community with only one hospital and having to go to Portland or Seattle, or who knows where, for competent healthcare.

No one talks about what happens when your favorite older doctor dies!
That happened to me. Will you ever replace him probably not.

This subject has really hit a nerve with many of us. This week I had a different experience - I purposely chose an orthopedic surgeon that is no-nonsense non-chatty totally focused on my upcoming surgery. I didn't care that he knew nothing about my life other than I am an ardent skier. When I lived in Portland/Manzanita I was thrilled to have OHSU. Now I live in Ventura, Cal, and when it came time to find a surgeon to do my hip replacement it was difficult. The physicians I work with all said the same thing - go to Cedars SInai in LA. A famous surfer Laird Hamilton is a friend of an athlete friend, and they both chose the same surgeon, so I did, too. I like him for his straight forward approach - for this surgery you want someone who does, and has done, many of this procedure. I told him that I had done my part, I found the surgeon I trust, and now just tell me what to do and when to do it - the rest is up to you! He looked at my xrays, said how are you even walking, laughed, and said good deal, see you in the OR. He knows I'm and RN, but he has no idea that I am also an architect, that I have lots of adult children and grandchildren, that I like to cook, that I have a cat from hell named Zorro, or any of the things that make up my life. He asked only a few questions about my symptoms, I gave short answers, and I'm ok with that. Sometimes you want a surgeon that is singularly focused on the procedure. So I will see him in the OR on Monday.

I have a PCP who was given to me when I joined the health plan years ago. I still feel like he doesn't know me from Eve until he checks his computer. He is great at giving referrals and writing prescriptions but has yet to diagnose a problem. I would love to have a Geriatric specialist, but there is only one in my plan and she has a waiting list a mile long. Sigh.

I recently developed a new issue with the muscles in my left thigh suddenly tightening involuntarily. This spasm lasts for a few minutes and repeats itself. My daughter asked if I had called my doctor about it. I told her no because I knew what he would say,. He would tell me that he couldn't diagnose my problem over the phone and I would have to come in. He might prescribe a muscle relaxant which I would be reluctant to take without a diagnosis.

I do wish doctors other than the Cadillac ones would make house calls, but for now, I am stuck as far as good medical care goes.

The oncology clinic support staff at OHSU deserve massive kudos. The one time I had an issue the social workers were great at running interference but if needed the patient advocate office is always there for serious issues. Taking a friend along to be support and witness is also another good strategy.

Darlene I hope your doctor discussed what meds you are taking - many can cause muscle issues.

As I approached 50, I found that doctors were more likely to blow me off and assume any complaint I had was due to menopause. They would rarely even look at me, and would say things like, “Oh, you’re a big old girl, you can’t be hurting that bad!” It’s really difficult and frustrating to try to find a doctor who cares enough to listen. When you do, they’re golden. Thank goodness I live in a big enough city that I can easily “fire” a HCP and find a competent, caring one who includes me in making decisions about my health care. We all deserve good care, regardless of age, gender, race, or any other factor. Love you to pieces!

Oh, Emily, I hear you about the death of a good doctor. I didn't know just how good he was until he wasn't there any more. It's been 35 years and I still miss him.

I've also had two excellent physicians give up medicine. They were two of the very best in town, and any time I went to another medical facility, and told them my doctors' names, I would hear, "You have the best doctors in Fresno." I am still brokenhearted over their leavings.

Thank you for the tip, Judith.

Kick ass and take names. Applied to health care this means: speak up when you don't like something, realize that doctors are your EMPLOYEES, and spend your money on someone who treats you like a valuable human being. May I add, go to doctors as infrequently as possible!

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