Why Caregivers Distrust the Healthcare System
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0:00:04.0 Announcer: Caregiving can sometimes feel like an impossible struggle. Caregivers may be torn between taking care of loved ones and trying to maintain balance in life. The good news is that it doesn’t have to be that way. The Caring Generation, with host Pamela D. Wilson. Is here to focus on the conversation of caring. You’re not alone. In fact, you’re in exactly the right place to share stories and learn tips and resources to help you and your loved ones. So now, please welcome the host of The Caring Generation, Pamela D. Wilson.
0:00:38:0 Pamela D Wilson: This is Pamela D. Wilson, caregiving expert, speaker, and elder care consultant. I’m your host. The Caring Generation focuses on conversations about health, well-being, caring for ourselves, and aging parents – tied together with humor and laughter essential to being a caregiver. We talk about topics that you ask for, even if they’re a little uncomfortable. If you have show ideas visit my website pameladwilson.com, click the Contact Me button and then Caregiver Survey where you can share your ideas and caring experiences with me.
0:01:17:00 Pamela D Wilson: The topic for this caregiver podcast is why caregivers have distrust in the healthcare system – and the steps you can take to get the care you want for yourself or an elderly parent. For the health and wellness segment of the program, I will share information from a research study from the Armstrong Institute for Patient Safety and Quality, led by Dr. David Newman-Toker. You will learn about three conditions that are misdiagnosed and result in harm to patients in hospital and treatment settings. Inaccurate or delayed diagnosis of health conditions results in 40-80,000 hospital deaths each year. Make sure you or an aging parent aren’t one of these deaths.
0:02:07:38: Pamela D Wilson: Let’s return to answer the question of why caregivers have distrust in the healthcare system. Some of the reasons about patient and physician interactions might surprise you. Let me start by asking you a few questions. What example did your parents set for you about taking care of their health? Did your parents see doctors on a regular basis? Did they participate in preventative care? Do you have a doctor you see regularly? Do you participate participating in preventative care – annual check-ups, blood work so that you can identify health issues before they become bigger health issues.
0:2:49:54 Pamela D Wilson: Preventative measures like mammograms, flu vaccinations, and so on? Regular medical care equates to better care throughout life. This is a proven fact. Not having a primary care doctor that you see regularly contributes to why caregivers have distrust in the healthcare system. When you don’t have a doctor, you trust you are usually more fearful of going to the doctor. The solution? Establish regular care with a doctor, even if you only go to a yearly appointment for a check-up. If you are a woman, having a primary care physician and a gynecologist for well women care is important.
0:03:34:60 Pamela D Wilson The #2 reason why caregivers have distrust in the healthcare system is the imbalance of knowledge and power. Let’s be honest. [chuckle] Many of us are suspicious of the healthcare system. Current evidence about mistrust points to the numbers of consumers who are hesitant to get a COVID vaccine. According to a PEW Research study, a link to the article will be in this show transcript on my website at pameladwilson.com— according to that study, 21% of U.S. adults do not intend to get vaccinated, and they’re “pretty certain” that researching more information will not change their minds.
0:04:15:55 Pamela D Wilson: The same research report confirms that habits and practices related to the seasonal flu vaccine link to plans to receive the coronavirus vaccination. Seventy-eight percent of Americans who received a flu shot this year say that they would get the vaccine. But, forty-seven percent of Americans are not concerned about needing hospitalization if they were to get the coronavirus. Controversy exists about whether workplaces can require employees to become vaccinated. This asks the question—are consumers who participate in regular medical care and ongoing preventative care more trusting of the healthcare system because of ongoing positive interactions.
0:05:03:20 Pamela D Wilson: Are consumers more fearful or hesitant about the vaccine because of a lack of education or limited experience interacting with the healthcare system. If you are a caregiver, do you face similar fears about caring for elderly parents because your life experience being a caregiver is limited? Caregivers tell me that they are afraid to make mistakes in caring for aging parents. They also tell me that the healthcare system is insensitive to their needs. How many of you feel this way? There are a lot of reasons why caregivers have distrust in the healthcare system. Number 3 relates mistrust in the healthcare system to caring for elderly parents or taking care of yourself as an adult.
0:05:51:98 Pamela D Wilson: When you think about an elderly parent with health issues, you can see that your parent is vulnerable. Parents may not feel well, experience physical difficulty, and be emotionally affected by health worries. Many elderly place doctors on a pedestal—they don’t ask important questions about a diagnosis or being prescribed medications. There is another complicating factor that spans patients of all ages that relates to the imbalance of power. We have all heard, in the news, a lot about the health disparities of minorities related to the effects of COVID. When all consumers don’t regularly see a doctor—preventative care doesn’t happen.
0:06:37:72 Pamela D Wilson: This happens in minorities. (Use of Preventative Services by Older Black and White Adults) Trust in doctors and the healthcare system is gained by creating a relationship with a doctor and following recommendations to improve a health issue. For example, you might have high blood pressure. The doctor prescribes a medication. Your responsibility is to help yourself. It’s having the prescription filled and taking the medication as prescribed. A practical step is to start a blood pressure diary. Take your blood pressure daily and document the readings. The next step would be to call the doctor’s office with the readings and make a follow-up appointment to discuss your blood pressure and whether that medication had a positive effect.
0:07:22:11 Pamela D Wilson: This is where the healthcare system fails consumers with education and why caregivers have distrust in the healthcare system. Doctors make assumptions about the interest or willingness of patients to follow through. Without even really asking. These biases or assumptions mean that a doctor may only write the prescription and not mention any practical steps to confirm the medication works. There may also not be a discussion of steps to take to reduce blood pressure through daily habits unless you ask. Actions that include eating less salt, losing weight, exercising regularly, limiting alcohol, reducing stress, and quitting smoking.
0:08:08:94 Pamela D Wilson: More on why caregivers have distrust in the health care system will be in the second half of the show. Up next, I’ll share research about the top three conditions most often misdiagnosed by doctors that cause serious harm to patients. If you’re interested in joining like-minded caregivers in an online group, visit my website pameladwilson.com to learn more. I’m Pamela D Wilson you’re with me on The Caring Generation. Stay with me; I’ll be right back.
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0:09:04:81 Pamela D Wilson: This is Pamela D Wilson, caregiving expert, elder care consultant, and author of the book, The Caregiving Trap: Solutions for Life’s Unexpected Changes. Let’s talk about the effects of medical misdiagnosis and how a delayed diagnosis can harm patients. This information is based on research from the Armstrong Institute for Patient Safety and Quality led by Dr. David Newman-Toker. The top three misdiagnosed conditions that negatively affect patients are stroke in the emergency room, sepsis in the hospital, and lung cancer not readily diagnosed by primary care physicians. Why is this information important for caregivers and aging adults?
0:09:51:55 Pamela D Wilson: It’s important because two of these conditions are very common for aging adults, and the third, lung cancer, is cancer that is difficult to diagnose without consumers being aware of their responsibility to report changes and concerns to a doctor. This is an opportunity to learn how to be proactive and work with a doctor to establish trust and receive the care you want. Let’s start with stroke. Stroke is the fifth leading cause of death in the U.S. and is a major cause of serious disability. If you have a parent who has experienced a stroke, your mom or dad may be physically weak on one side of the body. Mom or dad may have difficulty walking or need help with dressing or many other tasks.
0:10:37:99 Pamela D Wilson: What lifestyle habits result in a stroke? In the first segment, we talked about a high blood pressure diagnosis. Having high blood pressure can result in a stroke. Add to this being overweight, being physically inactive, meaning not exercising, smoking, or consuming high amounts of alcohol can raise blood pressure. Being diagnosed with high cholesterol or diabetes can contribute to a stroke. Having a stroke affects the vascular system meaning blood flow in the body, and stroke can result in vascular dementia. Before hearing all of this, how many of you were aware of all of the issues that high blood pressure can cause? (pause) Do you know how to tell if a parent or somebody is having a stroke?
0:11:25:39 Pamela D Wilson: The onset of a sudden severe headache that is not a migraine headache can be signs of a stroke. Sudden numbness or weakness in the face, an inability to smile. Noticing that the face droops on one side. Weakness in the arms or legs, especially on one side of the body. There may be sudden confusion, trouble speaking or difficulty understanding speech. Sudden trouble seeing in one or both eyes, sudden difficulty walking, dizziness, loss of balance, or lack of coordination. If you notice any of these signs, call 911 immediately.
0:12:08:30 Pamela D Wilson: The timing to receive treatment for a stroke is extremely time-sensitive in preventing permanent physical damage to the body. The best opportunity for recovery is diagnosis and treatment within 3 hours of the first symptoms. That’s not a lot of time. Don’t let a parent refuse to seek medical care because of fear of going to the hospital. Elderly who have a stroke can have a long recovery process after a stroke that can cause many physical and cognitive issues. The second most misdiagnosed health condition is sepsis. For the elderly, sepsis occurs most frequently as a result of urinary tract infections or pneumonia. How do you recognize an infection that might be sepsis?
0:12:54:70 Pamela D Wilson: Low blood pressure, a high temperature, and an increased respiration rate – meaning mom or dad is breathing rapidly—that can also indicate an infection. If you have an elderly parent with multiple health concerns having a blood pressure monitor, a thermometer, and a pulse oxygen reader handy in the home can help you identify rapid changes in condition that might require hospitalization. Having these medical devices available is how I taught care staff to monitor my clients’ conditions when I was court-appointed guardian, medical power of attorney, or a care manager. We caught issues quickly.
For more information about Sepsis, listen to my interview with Dr. Bernardo Reyes on this Caring Generation Podcast.
0:13:35:54 Pamela D Wilson: Let’s talk about the third most often misdiagnosed condition, which is lung cancer. Research from Dr. Peter Ellis of Hamilton Health Sciences in Canada confirms that overlaps exists between chronic respiratory diseases like COPD, chronic bronchitis, similar conditions, and a lung cancer diagnosis. The time between diagnosis and treatment of patients with lung cancer can be as long as six months. You might wonder why? The delays relate to medical referrals beginning with a primary care physician to a specialist and then all the time for additional investigation and testing. What are the signs that a person may have lung cancer?
0:14:20:75 Pamela D Wilson: Coughing, shortness of breath, coughing up blood, fatigue, bone or joint pain, chest pain, a hoarse voice, or weight loss. Because some of these signs can relate to COPD, bronchitis, asthma, and other respiratory conditions, patients might see these as normal and not anything to mention to a doctor. My client, diagnosed with lung cancer, had a long history of chronic respiratory issues. Her primary care physician never thought to refer her to a pulmonologist who may have identified the lung cancer at an earlier stage. My client was hospitalized and diagnosed by a hospital oncologist. Most physicians who treat patients with respiratory issues prescribe antibiotics, inhalers, or cough syrup. Diagnostic for lung cancer testing includes a bronchoscopy, chest x-rays, a CT scan, bone scan, blood tests, or even an abdominal ultrasound.
0:15:23:80 Pamela D Wilson: My recommendation is that if you or a parent have breathing issues, establish a relationship with a pulmonologist. Most importantly, as we discussed in the first part of this program, attend regular medical appointments to establish trust. Seeing specialists can minimize issues that arise about why caregivers have distrust the health care system. Primary care physicians may be hesitant to refer to a specialist. Be insistent about establishing a relationship with a specialist health conditions that are serious. For heart concerns, see a cardiologist. For hormones, diabetes, or thyroid issues, see an endocrinologist.
0:16:03:89 Pamela D Wilson: For indigestion, stomach, or liver issues, see a gastroenterologist. Part of gaining trust in the healthcare system is to learn more about health diagnosis. This knowledge you learn from specialists can exceed what a primary care doctor can offer you. When I was legally responsible for my clients who had multiple health conditions, medical specialists helped the most. I know what you’re thinking— more time at doctor appointments. True.
0:16:35:26 Pamela D Wilson: But the care you receive may rebuild or restore your trust in the healthcare system. Up next, we’ll return to the topic of why caregivers have distrust in the health care system. For more help about managing healthcare and caregiving concerns, check out my caregiving library, my Caring for Aging Parents Blog, and all the caregiver podcasts from The Caring Generation on my website at PameladWilson.com. I’m Pamela D Wilson on the Caring Generation. Stay with me. We’ll be right back.
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0:17:34:87 Pamela D Wilson: This is the Caring Generation. I’m Pamela D Wilson, caregiving expert, speaker, and elder care consultant. If your company isn’t offering support for working caregivers—maybe it’s time. Share my website pameladwilson.com with your human resources department. Ask for my caregiver support and education programs. Let’s return to our conversation—why caregivers have distrust in the health care system. Creating a two-way relationship with a doctor builds trust both ways. You trust your doctor that the recommendations will work. The doctor trusts you to follow through with health recommendations. This back and forth, give and take interaction creates a more even balance of knowledge and power so that you feel more comfortable asking questions and even disagreeing with suggestions if they don’t make any sense to you.
0:18:30:35 Pamela D Wilson: All healthcare consumers—all patients have a responsibility to seek and participate in care. While this may seem logical, it might sound practical. Many people don’t see a doctor to manage care issues that may worsen. This is number four in why caregivers distrust the healthcare system. Consumers seek care from what I call a “doc in a box.” A walk-in emergency care clinic or, in serious situations, a hospital emergency room. Individuals without health insurance may rely on emergency room care because they know they will receive treatment. While you may be treated for severe conditions, you can be missing out on learning how to manage other chronic health conditions.
0:19:20:75 Pamela D Wilson: Emergency type care is like crying wolf when you’re in trouble but not taking any ongoing responsibility to manage your ongoing health concerns. If you are low income, Medicaid and other programs exist. Depending on where you live, there may be community health clinics. Being low-income should never be a reason for neglecting your health or thinking that you don’t deserve medical care–you do. Number five for why caregivers have distrust in the healthcare system is frustration about a lack of results. That means giving up on seeking solutions or treatment. In some situations, a patient doesn’t follow up or ignores medical recommendations because the person doesn’t think the health issue is serious.
0:20:10:41 Pamela D Wilson: A lack of education and understanding about health consequences exists. The next concern is a patient with complicated health issues that a doctor doesn’t seem to be solving fast enough. There are also issues that physicians don’t take into consideration when working with patients who may be low-income and unable to afford co-pays for doctor visits, medications, or treatments. It’s not that these patients don’t want treatment—they do. But they can’t afford to pay for care, or they may be suspicious of a doctor who recommends treatments that they don’t understand.
0:20:50:77 Pamela D Wilson: This is when it’s your responsibility as a patient to speak up and talk about financial concerns so that your doctor doesn’t think that you don’t want care or you won’t follow through. Or you risk becoming a difficult or non-compliant patient. These are terms used by the healthcare system that are documented in a patient’s medical chart and stay with you or a parent for the rest of your life. Being a difficult patient or a non-compliant patient can affect the care you receive from the healthcare system. When I managed care, I had many clients who were designated problem and non-compliant patients. These designations were not their fault.
0:21:37:49 Pamela D Wilson: Some of my clients had a mental illness diagnosis. They had terrible personal—interpersonal skills that doctors and healthcare workers didn’t understand and didn’t have the patience to deal with. My other clients designated as non-compliant were elderly. My elderly clients felt that the healthcare system was too rigid and didn’t want to listen to their concerns about what they wanted for care—so they simply refused to cooperate. The downside is that some of these clients were reported by the healthcare system to the police or adult protective services. These situations don’t have to happen IF a caregiver or an advocate knows what to do.
0:22:20:38 Pamela D Wilson: My job as an advocate was to get the care my clients needed regardless of the situation. I succeeded because of having 1-, 15, 20 years of experience and never giving up. If you are in this situation, take a look at my online caregiver education course Taking Care of Elderly Parents: Stay at Home and Beyond. In this course, I share many of the systems and processes that I used to manage, monitor, and coordinate care for my clients that most caregivers and aging adults don’t know. If you are a working caregiver, ask your company to sponsor the course for employees. Never be embarrassed to ask for the help you need.
0:23:05:97 Pamela D Wilson: What if you are in a situation where you have an elderly parent who says he or she wants to get better but doesn’t take action. You may be disappointed in a doctor who has lost interest in trying to help your parent. If your parent refuses, a doctor can’t do much when the power to make changes is in your parent’s hands. As the caregiver, this is where you may need to have a serious talk about health concerns with your parent and the doctor. Wanting to improve and doing what it takes to improve health are two very different circumstances. Is your parent at a point where his or her health keeps declining? You are trying to hold everything together and feel like you are failing at everything.
0:23:51:81 Pamela D Wilson: If so, number 6 means it may be time to talk about palliative or hospice care. End of life care can be a difficult conversation for most families because of a lack of trust and the unknown. Palliative care means managing pain and symptoms while not expecting a health condition to improve. Hospice care is the next step that means that death is likely to occur within the next six months. Under hospice, agreement exists that a parent will not be sent to the hospital for treatment. In essence, you trust the healthcare system, a palliative care or hospice company, to do the right thing for your parent. While setting up care with palliative care or a hospice organization can feel uncomfortable, the care provided can be of significant comfort for your parent who no longer feels pressured to get better.
0:24:47:52 Pamela D Wilson: As the caregiver added support can be beneficial to you. Even still, you have more control than you think IF you educate yourself about how palliative care and hospice work. For the most part, my experience with these companies for my clients was positive. There were a couple of times where I took my client off hospice—yes, you can stop hospice care at any time by signing a form. They don’t tell you that. A couple of times, I changed hospice companies because of disagreements with care staff or the medical director. Medicare, Medicaid, and health insurance companies reimburse for palliative care and hospice services for homebound adults who qualify.
0:25:34:32 Pamela D Wilson: Which leads us to number seven of why caregivers have distrust in the healthcare system. Dealing with health insurance companies can be frustrating. If you go to the doctor, you receive an EOB afterwards. That is medical speak for an explanation of benefits that Medicare or your insurance company mails to you. While this may seem like more paperwork, it’s important to make sure you review the benefit statements from Medicare and other insurance companies. Glitches happen on medical plans that have in-network or out of network providers. Plans like Blue Cross, United Healthcare, Humana, and others have in-network providers.
0:26:17:27 Pamela D Wilson: Call the plans directly to confirm that a doctor is in-network. Take this one step further. Ask the insurance company to send you a statement via email or in writing to ensure a provider is in-network. My experience is that a telephone agent tells you a doctor is in-network. You see the doctor who also confirms he or she is in-network. Then you get the bill, and the physician is marked as out of network. This issue usually relates to a frustrating glitch in the insurance computer system that can be straightened out.
0:26:54:11 Pamela D Wilson: But only after a few frustrating hours of telephone time between you and your insurance company. Staff in your doctor’s billing office may also have to call the insurance company. Ask for the help you need. Help for caregivers and aging adults on a wide variety of health, aging, and caregiving topics are on my website at pameladwilson.com. Share The Caring Generation podcast with others you know. One in four people are caregivers looking for hope, help, and support. I’m Pamela D Wilson on The Caring Generation. Stay with me. We’ll be right back after this break.
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0:27:54:04 Pamela D Wilson: This is Pamela D. Wilson, caregiving expert, elder care consultant, and family caregiving speaker on The Caring Generation. If you want to begin caregiving conversations in your family but you’re not sure how, add The Caring Generation podcast app to the cellphone of an elderly parent, brother, or sister. The Caring Generation is on Apple, Google, Spreaker, Pandora, Spotify, and all of your favorite podcast apps. Let me start that caregiving conversation for you. We’ve talked a lot about why caregivers have distrust in the healthcare system.
0:28:29:64 Pamela D Wilson: Let’s talk now about building trust in all relationships—whether it’s with a doctor, in our families, with our friends, in the workplace, or in groups to which we belong. Becoming a person that others can trust starts with becoming a person we trust. We have to trust ourselves with our actions, what we do and what we say. Our parents may have set the initial example for how we interact with others. We grow up, attend school, get a job, and socialize. In a sense, we create our own herd of people. Herd is a word that has been popularized lately in discussions about COVID and herd immunity. The herd we spend time with can have a significant effect on our beliefs and actions.
0:29:21:08 Pamela D Wilson: Being part of a herd can be comforting because of feelings of commonality and safety. Being part of a herd can also be self-limiting if the people you spend time with don’t inspire you to positive actions or improving your life. This can be in part why caregivers have distrust in the healthcare system. Caregivers may spend too much time with people who don’t take care of their health. With people who have health issues that may blame others. Then caregivers become blamers like the herd. Whatever dreams or hope you have can be lifted by people in your life. Sometimes we have to move away from people or situations in life that limit our thoughts and abilities.
0:30:05:49 Pamela D Wilson: Start with looking at your relationships. Do you struggle to create positive relationships with family members, friends, or co-workers? Relationships that seem like a struggle can be a result of our actions and thoughts. Do you think or say one thing and do the opposite? Do you keep your word? Do you repeat the same mistakes over and over? Looking at our actions is the first way to build positive relationships and trust. How do you show respect to others? Gossip or speaking negatively about people says more about us than the people we criticize. If you are judgmental, ask yourself why. If you complain, ask yourself why.
0:30:50:98 Pamela D Wilson: Our life is all about memory. What we remember from yesterday, last week, last month, last year. If you want to change your life, change your habits. Thoughts and actions create a better future. Don’t let other people drive your thoughts or the way that you behave. Step out of your comfort zone now and then. It’s okay to observe other people and the way they behave and suspend judgment. Put your thoughts and energy into positive endeavors where you can improve relationships with others. Become a person others can trust. Model healthy behaviors for elderly parents and children. It’s easy to teach or tell others what to do—more challenging to do the things we recommend.
0:31:39:64 Pamela D Wilson: If you talk to an elderly parent about the importance of eating healthy, exercising, or going to the doctor, do these things yourself. Think about things that you value in life. These may be family relationships, kindness, honesty, courage, a good work ethic, or the responsibility to care for elderly parents. The responsibility to care for aging parents can take courage, especially when new situations continually crop up that you have never experienced before. Caregivers are one of the most courageous groups of people that I know. Caregivers keep going despite unexpected situations.
0:32:23:15 Pamela D Wilson: Rather than struggling, remember that help exists in sharing your experiences with other caregivers and learning from other caregivers. Join my caregiver group on my Facebook page, pamealdwilsoncaregivingexpert—it’s called The Caregiving Trap, named after my book. My caregiver group on-line, not on social media, is on my website at pameladwilson.com. I invite you to join one or both groups. Let’s finish up with one more point about why caregivers have distrust the healthcare system and why asking questions is a good thing.
0:33:01:82 Pamela D Wilson: How many of you watch television and see all of the pharmaceutical company commercials about a new miracle drug. Pharmaceutical companies and medical device companies spend millions of dollars marketing to physicians. While there have been protections put in place for consumers, there are doctors and teaching hospitals who receive millions of dollars from healthcare companies. When your doctor recommends a medication, always ask if there is a less expensive option. Some of these new medications are cost-prohibitive and put money into the pockets of large healthcare companies.
0:33:46:15 Pamela D Wilson: If your doctor recommends an x-ray or has a relationship with a surgical center or another provider, ask if there is any type of ownership interest or payment scale. While this might surprise your doctor, it’s a question that should be asked. When you think about healthcare—be an informed consumer. If anyone in the health or care industry makes a recommendation, ask about the basis of the relationship. If hesitation exists to explain, then be concerned. When I was a professional fiduciary, I made recommendations to my clients for related services.
0:34:29:63 Pamela D Wilson: I can say that I never had any type of financial arrangement with any of these service providers. I recommended the providers because I trusted them, and in most cases, I had experience using them myself. There—we’re back to the idea of trust and working with people you trust. Trust is important when you are a caregiver advocating for the care of elderly parents. Whether you are working with a hospital, a nursing home, a care community, care agency, doctor, nurses—it doesn’t matter.
0:35:05:76 Pamela D Wilson: Ask about all recommendations that are made and if there is a financial interest, payment, or other agreement that the provider may not want to disclose. These situations exist. Be informed rather than a naïve healthcare consumer. Next week, I’ll answer the question, why are old people stubborn? Why do all of us at times ignore suggestions that can make our lives easier? That can make our lives safer? That can shortcut our learning curve? I thank all my listeners—aging adults, family caregivers, and professional caregivers. You are amazing. Thank you for helping others and for your interest in learning and self-care. I am Pamela D. Wilson, caregiving expert, speaker, and elder care consultant. God bless you. Sleep well. Have a fabulous day tomorrow and a great week until we are together here again.
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