I’m not sure, when dealing with the medical profession if I’ve experienced: racism, ageism, sexism, or all of the above. But I certainly don’t feel my medical needs have been adequately met over the many years of my life.
I’ve had to fight and be aggressive for almost every health issue that I’ve ever had.
For instance: When I developed breast cancer.
I thought I felt a knot in my right breast. I went to a breast cancer specialist, who said my mammogram looked good and everything was ok.
Later that year I went to my Gynecologist for a second opinion regarding the “knot”. He said it was just arthritis. I had my annual mammogram the next year and the test results were good.
I continued to feel the “knot” and went back to my Gynecologist and was told again that it was arthritis.
I called a hospital and asked to speak to some department (I can’t remember what department I asked for) to speak with a nurse. A nurse came on the line and I told her that I had been feeling a knot or lump in my breast for some time and had seen two doctors several times. They both say there is no problem. My mammograms were ok so one doctor said everything was fine and the other doctor said it was just arthritis.
I asked her how should I communicate with the doctor regarding my issue. She told me to go back to the doctor and ask for an ultrasound. I went back to the doctor who again said “It’s just arthritis”.
I requested an ultrasound.
He rolled his eyes and said, “Well it’s not necessary but if that’s what you want, I’ll order it.” I’ll never forget those words.
He called me a few days after the test and said the radiologist “was a bit concerned about the unusual cystic appearance on ultrasound, not suspicious for malignancy but not adequately reassuring and felt that tissue sampling was warranted”.
I returned to the breast doctor who found it hard to believe that the ultrasound picked up on an “unusual cystic appearance” since the mammogram showed “stable, no criteria for malignancy”. I went into surgery for a biopsy and had 14 lymph nodes removed. I was in stage 3 breast cancer.
Before the surgery, the doctor clearly stated to me that I had options to consent to a mastectomy or just a biopsy. I consented to the biopsy and not a mastectomy. After the surgery, when he saw how bad it was, he asked me with an irritated tone, “Why didn’t you opt for a mastectomy”? And I said because you told me that I had the choice of just having the biopsy or getting a mastectomy.
Once we discovered how bad it was, of course, I had to have a mastectomy.
I went to another surgeon. This surgeon removed all of the cancer during the mastectomy. However, during my post-surgery recovery period, I developed an infection that once cleaned out, left a large hole.
It wasn’t healing well. It needed a vacuum pac machine to aid in closing the wound.
For some reason, the home health agency that I was using would not approve my getting it even though it was ordered by my doctor. I think the excuse was the expense even though I told them that was not an issue.
I got sick and was rushed to the hospital. When I was ready for discharge, I was given the option of a home health agency. I chose a different one who immediately provided the vac treatment. The wound healed almost immediately.
Do You doctors know about Lymphedema? Do You Care?
A few months post mastectomy I noticed a slight swelling in my right wrist and hand. During this same time, I started having serious pain in the wrist area. When I googled pictures of the swelling, I was able to self-diagnose lymphedema in my arm as a result of the mastectomy.
I saw a hand doctor for the pain and was told I needed surgery. I told the doctor about the lymphedema in that arm and wanted to know how he would address it during and after surgery.
He looked at my wrist/arm and said you don’t have lymphedema. This swelling is from the wrist issue and pain.
I knew I had lymphedema so I went to another hand doctor. He examined my hand and said yep, you have lymphedema. Then he asked me if I wanted him to send a note to the doctor to tell him I do have lymphedema.
I said NO! I don’t want anyone performing surgery on me if they can’t give a proper diagnosis. I want you to do the surgery.
It was the best decision I made.
I had to have a wrist carpectomy and he was totally in tune with my lymphedema. He had a nurse who knew how to wrap and my arm was wrapped when I came out of surgery. He listened to me and my concerns. He explained things patiently.
I was impressed. He was probably the best doctor I ever had and I’ve had plenty of doctors.
To discuss all of the issues and experiences I’ve had to be aggressive about when it came to my health care will take up too much space. But throughout my life, I’ve had feelings.
Feelings that I’m being dismissed.
Feelings that my mindset is not what it should be when it comes to my health.
Feelings that I’m simply old and when I feel bad, tired, or in pain, it’s the way I ought to feel.
Feeling like it’s the way I ought to feel because the doctors have either verbally or nonverbally told me that is the way I’m supposed to feel.
I have this feeling …. Noooooo I’ve got to get over this feeling.
I’ve got to fight back and get my groove on.
I’ve got to forget that when I tell the doctor I’m tired he just looks at my labs and says, everything looks good and doesn’t address my complaint.
Is it because I’m black, female, old, or all of the above?
I’ve got to get over the fact that while visiting with the doctor none of the questions that I ask are answered. Nothing is clearly explained. No options are provided.
Is it because I’m black, female, old, or all of the above?
Younger people with physical challenges, in addition to being given resources and tools, are provided encouragement and options to overcome those challenges and how to live fully with their challenges.
But when an older adult is struck with a physical challenge, they’re only given resources and tools to cope with rather than encouragement to overcome.
Ageism, Sexism, and Racism in Health Care
Ageism in healthcare prevents the 70-year-old stroke survivor from receiving the same level of medical intervention (and social support) offered to a 35-year-old stroke survivor. Consider how your healthcare provider approaches health challenges with you. Is the focus on coping or overcoming? There is a profound difference between these two approaches – which can lead to profoundly different outcomes
What is ageism?
Ageism occurs when people face stereotypes, prejudice, or discrimination because of their age. One common stereotype is that all older people are frail and helpless. Prejudice may also manifest in perceptions that “older people are difficult and unpleasant.”
These assumptions can lead to discrimination — a reluctance to recognize and respect the needs of older adults or to treat them less favorably than younger people.
One study reported that nearly 1 in 5 Americans age 50 and older say they have experienced discrimination in healthcare settings, which can result in inappropriate or inadequate care. About 29% of respondents who reported frequent healthcare discrimination developed new or worsening disabilities over a four-year period.
Ageism can also be implicit. For instance, a doctor may assume that an older patient who speaks slowly is cognitively compromised and incapable of relaying their medical concerns, or when an older patient is accompanied by a loved one, the healthcare provider directs questions and comments to the other person instead of the patient.
“Failure to include the senior patient in their own medical care can lead to serious misunderstandings, which may affect treatment,” says UCI Health SeniorHealth Center Director Lisa Gibbs, MD, who also is a professor and chief of the UCI School of Medicine’s nationally regarded Division of Geriatric Medicine & Gerontology.
UCI Health is Orange County’s only academic health system and is home to renowned healthcare providers and leading-edge medical facilities, according to ucihealth.org.
Meeting the needs of older patients
With the nation’s 65-and-older population projected to nearly double in size in the coming decades, from 49 million in 2016 to 95 million people in 2060, their care will become central to future healthcare policies.
UCI Health is already at the forefront in defining those policies and practices. The senior health Center is staffed by the largest group of board-certified geriatricians in Orange County and the region. They also are faculty members of the geriatrics division, which has been training new doctors to care for the unique needs of aging patients for nearly two decades.
All second-year family medicine residents are required to perform a four-week geriatric rotation that is split between outpatient and long-term care. What sets the program apart is a whole-person approach to healthy aging combined with the latest evidence-based medical practices and clinical research.
“Our goal is to teach them to deliver compassionate care to older patients,” says Khalighi, an assistant professor of family medicine.
Because Orange County has such a diverse population, the residents are taught to understand each patient’s culture, socio-economic background, level of education, and support system.
“We encourage them to look at each patient as an individual, to listen carefully, and, most importantly, to avoid judgment,” she adds. “In this way, we can more effectively address their concerns and medical issues.”
Dr. Katherine M. De Azambuja, who recently completed her geriatric medicine fellowship at UCI and is the newest physician to join the geriatrics team, agrees. “Every patient has a unique story,” she says. “It’s important to give our patients space and time to tell us their stories and medical concerns, and to share what quality of life means to them.”
The UCI fellowship is crucial to training geriatricians who will stay and practice in Orange County. “There is a serious lack of access to geriatric care right now and that will continue in the future for our burgeoning population over 65 years of age,” says Gibbs.
Asking the right questions
Invariably the geriatrics team asks each patient, if you could change one aspect of your healthcare, what would it be?
“This is one of the most important questions we ask during an annual wellness visit,” says Gibbs, because it prompts a discussion about what matters most to each patient. It also helps the provider outline realistic and relevant healthcare goals.
“The answer can be as simple as a patient wanting to be able to walk her dog again because it brings her joy,” she adds.
With this information, the provider and patient can develop a plan for managing her arthritis so that she can walk her dog for 10 minutes a day. It may also mean reviewing medications to ensure that they are age-friendly, don’t interfere with the patient’s mobility, or cause cognitive impairment.
Gibbs says evidence shows the added benefit of this approach is that when you include patients, their families, and caregivers in healthcare decisions, it’s more likely that their healthcare goals will be met.
Making healthcare age-friendly
In 2021, UCI Health was named an age-friendly health system — the highest designation for excellence in caring for older patients from the Institute for Healthcare Improvement (IHI). An age-friendly health system is guided by a set of evidence-based practices to organize care with a focus on an older adult’s wellness and strengths rather than solely on a disease.
Because the Senior Health Center is a total-care center for older adults, it makes primary care, consultations, memory assessment, and health assessment programs available all under one roof.
“We also have a collaborative team of senior-care experts including psychologists, social workers, pharmacists, nurses, neurologists, and psychiatrists,” says Gibbs.
The future of age-friendly care will depend on innovations in team-based treatment, telehealth, and clinical research combined with a unique understanding of the transitions people face in their later years that affect health and well-being.
“As people age, they diverge more and more in terms of function, ability and health — and ageism has no place in the Senior Health Center,” says Gibbs.
“It’s ironic that as geriatricians we focus our care on older adults, yet we only see individuals, not age,” she says. “Age is really our last concern. Our aim is to promote optimal living and empower longevity through comprehensive, compassionate care.”
OK, this deals with ageism. Now, what about sexism and racism? I’ll deal with that another time maybe.