The Effects of Care Refusals by Elderly Parents and Their Caregivers
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.
0:00:37:19 Pamela D Wilson: This is Pamela D. Wilson, caregiving expert, speaker, consultant, and guardian of The Caring Generation. The Caring Generation focuses on the conversation of caring. Giving us permission to talk about aging, the challenges of caregiving, and everything in between. It’s no surprise that needing care or becoming a caregiver changes everything. The Caring Generation is here to guide you along the journey to let you know that you’re not alone.
0:01:01:89 Pamela D Wilson: You are in exactly the right place to share stories, learn about caregiving programs and resources to help you and your loved ones plan for what’s ahead. Invite your aging parents, spouses, family, and friends to listen to the show each week. If you have a question or an idea for a future program, share your idea with me by responding to my social media posts on Facebook, Instagram, Twitter, YouTube, and Linked In.
0:01:32:15 Pamela D Wilson: Today, we are talking about the effect of care refusals from several perspectives. The first is denials by caregivers, aging parents, spouses, siblings, children, and others to participate in daily care, self-care, or care planning that usually relates to a lack of understanding of choices and how to make decisions.
0:02:00:15 Pamela D Wilson: Care refusals are common in caregiving situations when one person needs care and the other person—usually the caregiver but sometimes a doctor or a healthcare provider—has good intentions to motivate the care receiver to change habits or do more for him or herself. There is a delicate balance between being a caregiver and becoming a caretaker who takes too much responsibility for the care of another person and instead of being helpful makes the care receiver more dependent or insecure.
0:02:34:27 Pamela D Wilson: More on the topic of caretaking is in a recent Caring Generation podcast, How to Stop Being a Caretaker. The role of a caregiver who can navigate life and care for another person represents that fine balance between helping versus not helping too much. For the caregiver and the care receiver, equal participation, discussion, learning, and discussing choices are essential to the idea of shared decision-making that we will talk about during this show.
0:03:03:70 Pamela D Wilson: Guest, Dr. Thomas R. Radomski, joins us. He will share research from a caregiver–care receiver study about medication prescribing. Dr. Radomski is an Assistant Professor of Medicine within the Division of General Internal Medicine at the University of Pittsburgh and University of Pittsburgh Medical Center. He is also a core faculty member of Pitt’s Center for Pharmaceutical Policy and Prescribing.
0:03:31:64 Pamela D Wilson: his research article that we’ll discuss during the second half of the show will be posted in the transcript for this show on my website. Dr. Radomski has been published in journals such as JAMA, the Annals of Internal Medicine, and the Journal of the American Geriatric Society. He recently received the Award for Excellence in Clinician Investigation from the Society of General Internal Medicine Mid-Atlantic Region.
0:03:56:65 Pamela D Wilson: The interview shares the importance of relationships based on trust and understanding that impact short and long-term consequences of choices about self-care. If you are a caregiver and you see persons who experience good health and others who have health declines or are constantly sick you can see this. The quality of health predicts the level of help all of us may eventually need from others. Good or poor health impacts many areas of our life when we age.
0:04:26:41 Pamela D Wilson: But, we don’t give much thought to taking care of our health until we age unless something happens earlier in our lives that catches our attention. The world is so fast-paced. Many people go about their days on auto-pilot. Not really thinking about choices, or evaluating the pros and cons of decisions. Little thought is given to the effect of care refusals, saying no or procrastinating about planning for the future.
0:04:56:36 Pamela D Wilson: Care refusals and saying no have effects that go in two directions. You can refuse to care for or help another person. Another person can refuse to accept your help or advice. In some cases, you may be in a position where choices don’t seem to exist because parents or someone else choose for you. Like if you are a young child or a disabled person children who needs the care of parents. Children can go along with family behavior patterns.
0:05:27:87 Pamela D Wilson: Some parents, who are controlling, don’t support self-sufficiency, and as a result children grow up and remain dependent on parents for an entire lifetime. Adult children can remain attached to parents for ongoing approval and decision-making—which doesn’t benefit the children, but it penalizes them. Because they expect parents to help them personally and financially. These parental behaviors represent caretaking where saying no to children would be more beneficial to support self-sufficiency, but it doesn’t happen.
0:06:05:69 Pamela D Wilson: While hearing the words care refusals may bring negative thoughts to your mind. Saying no can be one of the best effects of care refusals if the no means the other person is encouraged to take responsibility for their actions and make choices. Refusing to rescue someone by saying no can be a thoughtful action, although at the time, saying no may be emotionally challenging.
0:06:32: 79 Pamela D Wilson: A parent who sets boundaries by saying no to children might fear what happens as the effect of care refusals or a refusal to rescue a child from a situation their actions caused. Let’s relate the effect of care refusals to choices by asking a few questions. If you are a caregiver, answer yes or no. Do you feel that you had a choice in becoming a caregiver? Could you have refused to become a caregiver? Yes or no?
0:07:02:56 Pamela D Wilson: If you don’t feel that you could have refused, what is it that you feared or wanted to avoid by saying yes? Next question. On a scale of 1 to 10, 1 being no, not at all, and ten being a very strong yes. How many believe that your family, cultural beliefs, personal beliefs, or values impact how you make choices and decisions? Did any of this impact the choice you made to become a caregiver or not?
(0:07:35:02 Pamela D Wilson: How many of you have children, aging parents, or spouses who refuse care or who refuse to take a course of action that could help them in some way? The effect of care refusals whether you are the caregiver or the person refusing to take an action impacts your daily life and can result in family conflict. If you are a caregiver who agrees that you cannot refuse to care for an aging parent, a spouse, or young children—how does doing something you’d rather not do – impact other areas of your life?
0:08:11:87 Pamela D Wilson: What activities are you giving up? What trade-offs are you making between school, time with friends, a career, getting married? How do you feel about feeling pressured to take care of a family member or a friend? Let’s flip the perspective and look at the effects of care refusals for the person who needs care – an aging parent, spouse, young children. The effect of care refusals gets more interesting when you add children into the mix of people who need care.
0:08:41:36 Pamela D Wilson: Yet, similarities exist when caring for young children and elderly parents. In both cases, the parents or the children don’t have the experience or the ability to make good choices so the person in the middle—the caregiver has to help with this aspect of life. This level of responsibility to care for children and aging parents can be a heavy burden for caregivers who lack boundaries and the ability to say no for fear of the effect of care refusals.
0:09:15:19 Pamela D Wilson: So for everyone listening, how have the choices you made in life about your health, career, friends, hobbies, or interests resulted in your life experiences today? Are you happy or do you wish life was better? Caregiving complicates life because another person—a young child, sibling, spouse—becomes dependent on the caregiver. And, depending on the situation, the caregiver and the care receiver may feel stuck. Neither realized the effect of care refusals or choices made that they live with today.
0:09:65:25 Pamela D Wilson: Why is choice is relevant to the effects of care refusals or saying no? In some cases, you may not realize you can make a different choice or that other alternatives exist if you don’t investigate. For every person, the effect of care refusals or that feeling of making a choice because others pressure you—instead of doing what you want has far-reaching consequences. Caregiving is an assumed family responsibility.
0:10:27:64 Pamela D Wilson: Family relationships and decision-making can be viewed differently from the way we might make decisions in other parts of our life. For example like at work. In families, communication may be rusty. Investigating and understanding options and making shared decisions may be unusual. There are benefits and risks to shared decision making especially if one person feels pressured. On the other hand, shared decision-making in family care and health situations can result in better care for everyone involved including self-care for the caregiver.
0:11:06:63 Pamela D Wilson: After this break, we’ll talk about conversations about care and shared decision-making in families. . Pay it forward to help others dealing with health, aging, family relationships, or caregiving issues by sharing information about this show and my website PamelaDWilson.com. The Caring Generation is available worldwide on your favorite podcast and music apps: Apple, Google, I Heart Radio, JioSaavn, Spreaker, Amazon Music, Breaker, Deezer, Listen Notes, Pandora, Player FM,
0:11:41:82 Pamela D Wilson: Pocket Casts, Podcast Addict, Podchaser, Stitcher, Spotify, Tune In, and Vurbl. You don’t have to manage caregiving or health issues alone. Find support on my website where you can schedule a 1:1 telephone or video consultation with me. Click on How I Help, Family Caregivers, and then Eldercare Consultation. This is Pamela D Wilson on the Caring Generation. Stay with me; I’ll be right back.
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0:12:38:19 Pamela D Wilson: This is Pamela D Wilson on the Caring Generation. Tips, articles, videos, links to The Caring Generation podcast, my book The Caregiving Trap: Solutions for Life’s Unexpected Changes, my caregiving blog and online webinar courses to help you care for aging parents, family members, or yourself are on my website at PamelaDWilson.com. We’re back to discuss the effect of care refusals.
0:13:03:19 Pamela D Wilson: Why is discussing the effect of care refusals challenging in family care situations. First, the caregiver who usually has to be the one to initiate the conversation is usually rushed for time. As a result, the caregiver makes simple decisions without involving grandma, grandpa, mom, or dad. The care receiver might view this as “taking over” by the caregiver and lacking consideration for my needs, wants, or opinions.
0:13:31:53 Pamela D Wilson: What happens then? Aging parents may complain and be viewed as unappreciative by the caregiver. If this is an ongoing issue, a parent may become resentful and angry with the caregiver, who may be doing their best but who may be unaware of how their actions are perceived by mom or dad. Caregivers can overlook the emotions or feelings of others when there is so much to do and caregivers are trying to preserve a level of control over their lives.
0:14:02:38 Pamela D Wilson: These perceived selfish behaviors usually result from the caregiver’s belief that getting the work done is a higher priority than talking about it with mom or dad. Because discussions may take time. Elderly parents may disagree. And so, the effect of care refusals by the caregiver—in the way of refusing to discuss decisions or asking the opinion of an aging parent—begins without a son or daughter realize that they are denying a parent the right to choose.
0:14:38:58 Pamela D Wilson: Looking at the unintended effects of care refusals from an opposite perspective puts a different spin on the idea of care refusals – yes? How would you feel if someone did this to you? If a spouse or friend constantly made decisions that appeared to benefit them without asking you but expected you to go along with their decisions? Stop and think about this for a moment. You might feel resentful or think that this person doesn’t really care about you.
0:15:11:02 Pamela D Wilson: The idea of selfishness or stubbornness might enter the picture. How many times do we hear oh, selfish elderly parents or stubborn elderly parents or the same about children? We have these perceptions about others that become our reality. For example, parents think, “oh my son or daughter believes they know what’s best for me and will do whatever they want to do—regardless of what I want.”
0:15:35:93 Pamela D Wilson: Caregivers think, “man, I can get this done faster if I ask forgiveness instead of permission.” But, these habits and beliefs eventually become ingrained if either person doesn’t speak up to say, “wait a minute can we talk about this?” When caregivers take over managing aspects of the life of a spouse or an aging parent by removing choices or failing to have discussions to make shared decisions, relationship problems build up like a storm that you watch at a distance.
0:16:10:60 Pamela D Wilson: Over time, the care receivers feel as if they have no control over even the smallest choices about life. They fail to say thank you to spouses or children who are helping out. An aging parent or a spouse can become critical or negative of the caregivers’ behavior. Then what happens? The caregiver becomes angry and resentful. All the while, family members could resolve problematic effects of care refusals by learning how to have simple conversations.
0:16:44:53 Pamela D Wilson: I know—initiating conversations sounds simple but it may not be that easy if you are not skilled in having honest conversations within your family. Learning how to communicate and discuss uncomfortable topics is a skill that everyone can learn through practice and a little trial and error. If you don’t believe you can do this, you can. After all what experience did you have as a caregiver before you became a caregiver?
0:17:15:82 Pamela D Wilson: What experience did you have as a person who needs care before some event changed your life and made you dependent to a degree on receiving help from others. The effects of care refusals in either direction teach us how to accept or receive help or care for ourselves because we value our health and well-being. To build and maintain positive, trusting, and caring relationships, the caregiver and care receiver must begin to express their wishes, preferences, and views about issues and problems, even if you’re on opposite sides. Even if you have differences.
0:17:57:05 Pamela D Wilson: Believing or worrying that someone may disagree with you is not a reason not to talk. Think about the information you might learn. You might go into a conversation with one belief and come out the other side realizing that what you believed was faulty. You might have learned new information that makes you think differently about a person or a situation. If we could hold onto this thought, we could avoid so many assumptions about other people based on bad information. We could avoid why we think people do what they do and being wrong in our thoughts.
0:18:42:26 Pamela D Wilson: Imagine the judgment, criticism, stubbornness, and having to be right that we could give up if we give other people the benefit of the doubt and take time to have intentional and honest conversations to investigate information. But doing so means that we might discover that we were wrong about our thinking. Are you ready for that? Are you ready for a change? This is how the effects of care refusals go both ways.
0:19:08:47 Pamela D Wilson: We can refuse to consider the feelings and opinions of others, becoming so closed-minded that we harm ourselves. Or we can change our way of thinking so that when our mind makes a snap decision to say no, we say, “Hey, wait a minute. Let me give this a little thought. What questions should I be asking? What might I not know? What if my way of thinking isn’t right?” Imagine that! But why doesn’t this happen? We’re afraid of the effects of hurting another’s feelings because we disagree.
0:19:42:77 Pamela D Wilson: We’re afraid of having to confront a parent, spouse, or child’s emotional response to a subject because we don’t have the skills to guide this discussion. So what happens? Discussions about opposite opinions or complicated topics are avoided or delayed until the volcano blows, the hurricane shows up or the big bad wolf—remember the story of the Three Little Pigs? Or when the big bad wolf shows up to make us feel silly about our thoughts or plans until we become confident through becoming knowledgeable to direct the conversation.
0:20:23:78 Pamela D Wilson: So how do we begin to have these conversations? What if there was a framework, like 1,2,3,4 that you could use? Would that make understanding the effects of care refusals easier? Let me share a couple of life examples to further understanding. Think about honest to relate a subject to an experience that anyone might have. You can also refer to the similarity of a current issue and how it might have been solved it in the past.
0:20:57:50 Pamela D Wilson: So you begin by acknowledging the life experience of the other person. Let’s say you want to talk about the effect of care refusals by a parent to discuss a common but potentially embarrassing issue. For example, mom, “I know that wearing an adult diaper has to be uncomfortable, awkward, or both. If or when this happens to me, I’m not going to like it either. I tried to bring this up before, and it seemed you didn’t want to talk about it. Or, “dad I know you’re having accidents. I can tell.”
0:21:32:61 Pamela D Wilson: Can we talk about options to dispose of used diapers, or make it easier for you to clean up so that the odor isn’t noticeable. I know you had to deal with these issues when we were babies. What did you do? This is an example of managing the effect of a care refusal to talk about a problem for which a simple solution may exist. Admittedly, some problems are more complicated. There may not be past life experience supporting a solution or identifying potential options if you find yourself in a new situation.
0:22:09:93 Pamela D Wilson: We’ll talk about a process to have conversations about the effects of care refusals after this break. Are you a caregiver for young children, a spouse, aging parents or yourself? While caregiving differs by the stage of life many caregivers experience similarities. I answer questions posed by caregivers in this weekly podcast, through videos on social media channels like YouTube, Facebook, Linked In, and Twitter.
0:22:37:44 Pamela D Wilson: If you have a question can communicate with me on social media or complete the caregiver survey on my website PamelaDWilson.com. At the top of my website page go to Contact Me and then click on caregiver survey. If you are working and caring for family members and your company doesn’t offer support or education programs for caregivers, it’s time.
0:22:58:18 Pamela D Wilson: Share my information with the human resources department at your company. I provide on-site and virtual programs for corporations and groups interested in supporting caregivers. More information is on my website at PamelaDWilson.com. We’re off to a break. Stay with me. I’ll be right back.
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0:23:44:19 Pamela D Wilson: This is Pamela D Wilson, caregiving expert, author, and speaker on The Caring Generation. If you are a caregiver interested about being proactive about the care of an aging parent, my online webinar course: Stay at Home: Helping Elderly Parents Stay at Home and Beyond offers the processes and systems I used to manage care for my clients for more than twenty years. Visit the caregiver support Store Page on my website to learn more.
0:24:12:35 Pamela D Wilson: Let’s talk about more systems to help work through the effects of care refusals whether you are the caregiver or the person who needs care. How have you worked through problem-solving scenarios in the past? What has worked and not worked? Let’s start by asking a few questions. The first question is what is the decision or problem to be solved? Making decisions and solving problems are different.
0:24:39:99 Pamela D Wilson: Problem-solving is a method to create potential solutions for an issue. The steps to solve a problem can be helpful to identify the cause of the why and the effect of care refusal. Actions involved in problem-solving include research, gathering facts, analyzing information, and asking a lot of questions like where, how, who, why, and what.
0:25:06:73 Pamela D Wilson: If you watch television you might remember some of the detective shows like Columbo to Perry Mason, to Law & Order, Hawaii 5-0. Or even the medical show, Dr. House. Detectives, police, attorneys, and physicians are problem solvers. If you have a problem to solve and have identified the root of the problem which can be an investigation in itself, look at your actions as being similar to an investigator.
0:25:36:20 Pamela D Wilson: Let me use a simple example. You visited friends who invited you to go on a long walk or a hike. These aren’t activities you usually do. The next morning you wake up and your body is sore all over. Your first thought might be that long walks or hikes are an activity you should avoid because the activity makes your body sore. An older parent doing a similar activity might feel the same.
0:26:00:60 Pamela D Wilson: Let’s say mom or day stays home most of the time and sits in a lounge chair watching television all day. A neighbor invited them out to go shopping that involved walking for hours at a mall. Your parents get home. The next day they can barely get out of bed without feeling pain. Mom thinks she overdid it the day before so she’s going to sit in a chair all day. Being purposely inactive is a refusal of self-care and physical fitness.
0:26:28:68 Pamela D Wilson: Muscle soreness, body stiffness after an activity? Is the problem activity or lack of activity? Anytime the body does an action that is hasn’t performed in some time, unused muscles can become sore. Elderly parents who don’t walk on a regular basis can experience muscles loss, poor balance, and poor physical coordination, increasing the likelihood of having a fall or a fall and breaking bones.
0:25:99:68 Pamela D Wilson: It’s no different if you mow the lawn or garden or get down on your hands and knees and scrub the floor and all of a sudden you’re sore the next day. These minor aches and pains are the body’s way of telling you that you’ve lost muscle strength and that ongoing activity to strengthen muscles can be beneficial. So while being inactive may not result in pain – being sedentary—not active— increases the risk for many common diseases.
0:27:26:79 Pamela D Wilson: People who are inactive are more likely to suffer from heart disease, diabetes, obesity, depression, anxiety, osteoporosis, and more. Watching television and being connected to devices, all the time, have negative impacts on the physical body and the mind. Once you have identified the problem, realize that the problem’s importance, relevance, or time sensitivity may be different for everyone involved.
0:27:56:26 Pamela D Wilson: It’s important to understand these factors as you investigate options with the corresponding advantages and disadvantages. Some people may be more conscientious about preventing issues or attending to details than others. A parent may have had a lifelong habit of not dealing with issues until the issues caused serious problems. While a child who is the caregiver may prefer to take action to prevent potential issues.
0:28:29:71 Pamela D Wilson: These two behavior styles represent a gap in values of what matters most. Let me give an example. As an adult child watching a sick parent suffer, you go to the doctor every six months for a check-up and have completed all of the preventative testing and vaccinations you believe will keep you healthy. You wish mom or dad would do the same but, your parent doesn’t like doctors. Convincing mom or dad to go to the doctor takes substantial effort.
0:28:59:27 Pamela D Wilson: You have to take time off work to drive and attend the appointment with your parent so that you know first-hand the information discussed. Having this information directly from the physician allows you to try to motivate mom or dad to follow up on the doctor’s recommendations. To take your parents to the doctor, you usually have to take a half-day off work. You feel that your parents don’t appreciate your efforts or interest in their well-being.
0:29:29:87 Pamela D Wilson: Medical care is an area where you can use questioning to gauge a parent’s understanding of their medical condition and the long-term consequences that may require more of your time as the caregiver. A typical response when a caregiver brings up concern may be a refusal to discuss the topic or denial of the issue having any consequences. You’ve probably heard a parent say, “I don’t need any help. I can take care of this myself.”
0:29:58:47 Pamela D Wilson: You know that a parent needs help because prior attempts to take care of “it” resulted in a call to you for help. Pointing out situations where a parent underestimates their ability to manage is not a solution to the problem. It can create more problems. Instead, ask about a parent’s participation and choices to see if there is awareness about why the issue or problem occurs.
0:30:27:16 Pamela D Wilson: For example, “I’m sorry you’re not feeling well today. Was there a change in your routine that might be causing you to feel sick?“ Keep asking questions until you have an idea of the level of understanding of an aging parent. If there are no obvious reasons for a parent’s change in condition, begin tracking how changes in routine or activity result in illness or days of not feeling well. It may be necessary to implement daily checks to minimize the effect of care refusals.
0:30:56:05 Pamela D Wilson: For example, mom or dad forget to take medications and then don’t feel well. Be an investigator, what options exist for medication reminding? Mom or dad don’t eat regularly and then don’t feel well. What options exist for easy-to-prepare meals. Or what if the issues are medically related? Neither you nor your parents have a good understanding of the medical condition and the medications taken. In that case, it’s time to talk to the doctor. If the issue is medication-related more information is coming up in the next segment.
0:31:32:17 Pamela D Wilson: As much as you might want to take over tasks because it’s easier or faster, acknowledge the importance of your parents remaining involved and active in their care. The more you do, the less aging parents or a spouse will do. Parents, spouses, and others will expect you to keep doing more and more. The effects of care refusals, whether you take over and make decisions for your parents or your parents refuse care, have long-lasting consequences that we will talk about later in the show.
0:32:07:22 Pamela D Wilson: Up next, Dr. Thomas R. Radomski, shares research about caregiver and elderly discussions about taking or discontinuing medications that you won’t want to miss. We’re off to a break. If you are looking for help navigating the healthcare system, decision-making about care for elderly parents, or making a care plan for yourself, I can help. Visit my website PamelaDWilson.com to schedule an eldercare consultation. Click on How I Help, next Family Caregivers, and next Eldercare Consultation.
0:32:41:13 Pamela D Wilson. I also want to thank listeners who follow and communicate with me on social media – Facebook, Twitter, Instagram, Linked In, and YouTube. The questions you ask and the experiences you share result in topics for this podcast, videos, and other articles I create for you. . I’m Pamela D Wilson. Stay with me. I’ll be right back.
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0:33:26:53 Pamela D Wilson: This is Pamela D Wilson, caregiving expert, advocate, and speaker. Are there days when you wish you had someone to talk to? Someone to reaffirm that you are doing the right things? You’re in the right place with me and all of the listeners on The Caring Generation. I’d like to introduce you to Dr. Thomas R. Radomski.
0:33:47:99 Pamela D Wilson: Dr. Radomski thank you so much for joining me.
0:33:50:88 Dr. Thomas R. Radomski: Thank you very much for having me.
0:33:52:95 Pamela D Wilson: A lot of older adults over age 65 take a lot of medications. And the healthcare system uses this term called polypharmacy to describe medication use. What is it and how can it have adverse effects?
0:34:16:32 Dr. Thomas R. Radomski: Sure, so polypharmacy—and I should mention that there are a couple of definitions out there. But the one that’s most commonly used is when an individual is taking five or more medications. We can consider that to be polypharmacy. And the concern really is as an individual is taking more medications there’s increased risks of related side effects.
0:34:28:38 Dr. Thomas R. Radomski: Potential interactions between those medications and some of these can be pretty serious. Some of these adverse events that can happen as the result of taking too many medications can result in falls, confusion for example. Some of which can land people in the hospital. And in severe cases even result in death.
0:34:47:86 Pamela D Wilson: And you made me think of a question. So, older adults usually have more health issues. So are they the most likely group to be taking 5, 10, 15 medications?
0:34:58:05 Dr. Thomas R. Radomski: That’s correct. And so for example older adults, who we typically define as adults 65 years and older. About one-third of adults in that population are subject to polypharmacy. So taking five or more medications. And you can see that this number increases when you look at adults who are in a nursing home setting. And some studies estimate that as many as eighty-five percent of older adults in a nursing home setting may be subject to polypharmacy or taking five or more medications.
0:35:29:49 Pamela D Wilson: I found you through your research, which I’ll post an article in the podcast transcript. In general, do you think that most consumers based on the participants in your study have a good understanding of the medications they’re taking and why they’re taking them?
0:35:43:85 Dr. Thomas R. Radomski: This is a question where it’s really hard to give a yes or no answer for and I think there are a lot of different factors that come into play. And I would say in general, most patients do have a sense of the medications they’re on and why they’re taking them. But there are a lot of factors that can affect a patient’s understanding of that. And so, one factor is just the sheer quantity or number of medications that they’re on.
0:36:12:57 Dr. Thomas R. Radomski: Going back to that concept of polypharmacy. And I think to some degree that’s just common sense. The more medications that someone is on the more they have to keep track of. The more confusing it might be. I think the extent to which their doctor really communicates the purposes of these medications, I think is another key factor. And then also a just patient’s understanding of their health and health care. We often use the term health literacy.
0:36:39:75 Dr. Thomas R. Radomski: But some patients are very involved and savvy in their healthcare and some patients choose to be more passive. I think that can affect how well they understand what medications they take and what the purpose of those medications is.
0:36:54:69 Pamela D Wilson: Let’s say that I’m hearing this and I’m hearing the word health literacy. What questions should I ask you as a doctor about taking medications if I’m not really sure what I should be asking?
0:37:16:29 Dr. Thomas R. Radomski: Sure absolutely. That’s a great question. And so I think what’s most important for a patient to understand is why they’re taking the medication. How they should be taking the medication. For example, is it once a day. Is it twice a day? Is there a special way that a medication should be taken?
0:37:27:94 Dr. Thomas R. Radomski: So for example, some medications should be taken on an empty stomach and some medications should be taken with food. But by taking a step back, I think really just understanding the why associated with any medication, I think is most important. And then understanding the how and when, if you will about how that medication should be taken I think is the next most important thing.
0:37:52:41 Pamela D Wilson: When I was a care manager I would have some clients who said, ”you know, I’m not taking any medications.” So if a patient comes to you and says, you know I really don’t want to take medications. Can you explain, like how you would go through the alternatives of what could happen?
0:38:08:62 Dr. Thomas R. Radomski: Absolutely. And this really gets to this concept of shared decision making—as we like to call it. Where in a sense you treat, you regard the patient as really a collaborator in their healthcare. Rather than someone you are in essence just giving orders or recommendations to. And so in instances where a patient really prefers not to take medications. That is something that in my practice as a general internist where I treat many older adults, it’s something that I really take to heart.
0:38:41:68 Dr. Thomas R. Radomski: Because if you have a patient that’s not interested by in large in taking medications and the first thing you do is go to prescribe them medication, without having a conversation first when a problem arises, that really has the potential to erode trust and erode that relationship. So, in instances like that where I think that a medication could be beneficial to the patient.
0:39:15:25 Dr. Thomas R. Radomski: I first start by describing the problem or the diagnosis that I’m concerned about. And then from there, I move on to the treatment options that are available. I talk about treatment options that don’t involve medication and how effective they might be. And then I also do say but then we could prescribe medications for this. This is what I would prescribe. And then I talk about why I think taking that medication might be a good idea. And what I also do is, I also always leave the door open.
0:39:38:59 Dr. Thomas R. Radomski: So maybe I make a recommendation that I think a patient should take a medication. They decide at this time that they’re not interested and we decide to pursue another route. I think it’s really important to have a check-in period down the road. Whatever the time frame is appropriate for the condition that you’re managing. Where you regroup.
0:39:56:63 Dr. Thomas R. Radomski: You make sure that whatever the patient is doing—decides to do for that problem on their own. Maybe it’s changing their diet. Maybe it’s exercising. Maybe it’s physical therapy. Maybe it’s counseling. Just some examples of some very effective treatments that don’t involve medications. You have that opportunity then to check back in with them. See how they’re doing. And just see has their mind changed?
0:40:21:85 Dr. Thomas R. Radomski: Maybe now they might be interested in taking a medication for that problem. But I think also, it’s up to us as physicians to recognize that jumping right to a medication often isn’t the best idea. And empowering patients to pursue treatments that don’t involve medications I think is often a very good way to treat a lot of different conditions. And that can always be done in conjunction with medications as well.
0:40:49:00Pamela D Wilson: The study included adults living at home and their caregivers. Were there any opinions about the priority for taking a medication that—say like for arthritis? You know, I take it and wow and I feel good. I don’t have any pain anymore versus medications maybe for high blood pressure or diabetes where you can’t really see, like an immediate effect—and they’re like, “well why am I taking this if I can’t tell there’s a difference?”
0:41:13:05 Dr. Thomas R. Radomski: So in general, the participants in our focus groups did tend to prioritize those medications where there was more of an immediate return in terms of improvement in their symptoms. And that was really for two reasons. So the first reason was that a) whatever that symptom was—whether it was pain from arthritis. Maybe it was nausea, for example. Maybe it was pain from neuropathy, so like that burning pain that some people can get in their feet.
0:41:43:68 Dr. Thomas R. Radomski: That that symptom itself was just better and not causing them as much discomfort. But then also related to that was the fact that when they didn’t have that discomfort it really just improved their overall quality of life and their ability to go about their day-to-day tasks. And that was really important for a lot of the patients in our study as well.
0:42:05:15 Dr. Thomas R. Radomski: Another thing that was really important, really I would say second to that was when patients were able to perceive an improvement in whatever condition that medication was being used for in their lab values, in their blood pressure readings. So they were able to see that there really was a benefit from taking that medication.
0:42:25:79 Dr. Thomas R. Radomski: Our patients were a little more skeptical about those medications where they might be taking it and you might not see any returns or improvements until several years later or you might not really be able to appreciate any obvious benefits at all. Maybe it was a medication that was more preventative in nature. So you were just hoping something wouldn’t happen like a heart attack or a stroke for example. But it really was those medications that directly treated symptoms and improved their quality of life that were most valued by the patients in our study.
0:43:00:20Pamela D Wilson: You mentioned a good thing. You said lab values and I know most people don’t – they see those reports and they don’t know what it means. But, so I had a client who was on NSAIDS for pain, and bloodwork was taken and like a year later the kidney numbers were way up. So how can doctors and patients talk about the fact that this might be a good medication for you but there’s these side effects and how do we decide if we continue to take it if, you know, kidney function is impaired?
0:43:28:41 Dr. Thomas R. Radomski: So that’s a great question and I think that really ties back to that initial conversation that a patient and a physician or clinician should have in terms of going over the purpose for the medication. How they should be taking it and what are some things that the patient should be looking for in terms of side effects. But also what monitoring will the physician or the clinician do to keep an eye on that medication and make sure that it isn’t causing any harm that the patient may not experience right away.
0:44:03:40 Dr. Thomas R. Radomski: So it’s not uncommon that after we start a medication in a patient, maybe a month later, 6 weeks later, give or take depending on the medication, we will check some lab values. And I think all of that is important to really lay out when that medication is being started in terms of the next steps. So I might explain to a patient, so we’re going to start this medication.
0:44:75:74 Dr. Thomas R. Radomski: But this medication may do x, y or z. So it may affect your kidneys. It may lower your potassium level. Those are just two examples. And so therefore we would like to check labs in 2 to 4 weeks or 4 to 6 weeks just to make sure that you’re able to take this medication safely. And I think it’s really important that that be part of the initial conversation.
0:44:50:02 Pamela D Wilson: And what were the opinions of the older adults and the caregivers in the study regarding hearing about side effects and making a decision whether to continue to take it or discontinue it?
0:45:00:86 Dr. Thomas R. Radomski: So it really came down to weighing the pros and the cons. And so if a medication had a side effect but it was also clearly helping for another reason then the patients and their caregivers were often more apt to want to stick with that medication. And what we found was that caregivers were often willing to stick with a medication longer than the patient themselves.
0:45:25:76 Dr. Thomas R. Radomski: Especially if the medication was helping in some way that it was advantageous to the caregiver. So for example, if—and I should say too, certain to side effects that were less advantageous to the caregiver they were apt to maybe want to urge discontinuing that medication sooner. So for example, medications that caused some confusion or fatigue, caregivers really didn’t like those medications because it made it difficult to interact with the patient for whom they were caring. So that might be a medication with a certain side effect that they would want to give up on sooner than the patient themselves.
0:46:05:48 Dr. Thomas R. Radomski: But it really just came down to the pluses and minuses as it related to that medication and whether the benefits were worth enduring the side effects. One last point on that is that once a medication side effect got to the point where a physician was looking to prescribe another medication to treat that side effect—that was often the breaking point for a lot of patients and caregivers. They felt that they really just should not be taking more medications to treat the side effects of other medications. And on that point, I would agree and that is one of the reasons why so many older adults can be subject to polypharmacy.
0:4646:54 Pamela D Wilson: So what are the risks of a patient saying, “No, I’m not going to take this,” without telling their doctor?
0:46:51:84 Dr. Thomas R. Radomski: Well, that—sometimes those risks can be small but other times they can be more significant. If it’s a medication that the doctor and the patient had a discussion about and they say, “let’s try this medication for a week or two. See if it helps your symptoms. If not maybe we can discontinue it.” Ideally, the patient would get back with the physician or the physician would contact the patient and say “hey how are things going and then they would mutually make a decision about whether to continue or discontinue that medication.
0:47:23:41 Dr. Thomas R. Radomski: But in my experiences, in instances like that. Sometimes like after a week or so the patient is like, yes this really isn’t helping so they just stop it. And in a situation like that, that is often innocent. You know, whatever that symptom is—is still there for the patient. But it’s not causing them overt harm. The flip side is that maybe a patient is prescribed a medication for diabetes for example. And perhaps it causes them some side effects. IF they were to stop that medication, that could really potentially cause them some harm if their blood sugar were to increase.
0:47:56:65 Dr. Thomas R. Radomski: If they were to develop complications from diabetes down the road or perhaps even end up in the hospital if their diabetes were to become very uncontrolled. So in general, I’m always hesitant when patients stop medications without letting me know first. Just because a) there might be other ways that I can help them. And b) in the worst-case scenario they could develop more serious problems down the road if some of their conditions aren’t adequately treated.
0:48:23:76 Pamela D Wilson: Is there anything else you’d like to share?
0:48:28:68 Dr. Thomas R. Radomski: The one final thought I would say, in conducting this study what we really found were that patients were really open and eager to engage in the dialogue with their physicians about their medications and really had a desire to understand why they were taking what they were taking. And there’s a saying in medicine that you can only move at the speed of trust. And I think that really applies to taking medications. Especially in a patient who is on a lot of medications and may very well need many of those medications.
0:49:02:58 Dr. Thomas R. Radomski: I think keeping an open dialogue and this comes down to the patient but also really it comes down to the physician as well is really key to cultivating that trust. Making sure that the patient is only on what they need and facilitates actively stopping or deprescribing medications that they no longer need to be healthy.
0:49:26:80 Dr. Radomski I thank you so much for your time and for all of the research that you do.
0:49:31:17 Dr. Thomas R. Radomski: All right thank you very much for having me.
0:49:33:35 Pamela D Wilson: The Caring Generation podcasts are available worldwide on your favorite music and podcast apps. Listen and follow the program every week for proven, reliable tips, information, resources, and research from international experts about caregiving, aging, health, and everything in between. Add the podcast app to the cellphones and computers of family members, aging parents, and coworkers. We’re off to a break. I’m Pamela D Wison on The Caring Generation. Stay with me; I’ll be right back.
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0:50:32:46 Pamela D Wilson: This is Pamela D Wilson on The Caring Generation. Does your group or organization have an interest in education about caregiving, health, navigating the healthcare system, legal issues, and more? if so, visit my website PamelaDWilson.com and click on the Speaking Tab to learn more about virtual or on-site events and unique education programs that I create for the needs of each audience.
0:51:01:18 Pamela D Wilson: Following up on the interview with Dr. Radomski I’d like to run through a process you can use for making decisions alone or with a spouse or aging parent. It’s important to recognize that there is no one right decision for everyone because personalities, preferences, the stages of life, and goals are different. The right choice for you may be the wrong choice for an aging parent, a spouse, or a friend.
0:51:30:78 Pamela D Wilson: This is one reason why being open-minded and not pushing your preferences on another person is important. Allow others to make their own decisions and live with the consequences after you gather enough information and seek advice to choose between options. Let me share a list of statements to which your level of agreement or disagreement confirms whether you need more information or whether you are ready to make a decision.
0:51:59:51 Pamela D Wilson: Can you strongly agree to these statements? I know which options are available to me. I can describe the short and long-term benefits of each option as well as the costs, risks, or potential side effects, or even the unintended consequences. I am clear about which of the benefits of this choice is most important to me. I can describe the risks and choose between a benefit or a risk in making this decision.
0:52:34:77 Pamela D Wilson: I have a backup plan if my choice does not go as well as expected. I have consulted experts or have received enough advice to make this choice. I have enough support from others in my family, if needed, to make and implement this choice. I am making this choice without being influenced by others or feeling that I am making this decision for another person instead of myself.
0:53:06:85 Pamela D Wilson: I am clear about this choice and have not changed my mind in the last 24 hours. This decision is now easy for me to make. I feel that I have investigated all of the options and can make an informed decision. I am satisfied with the time and effort I put in to make this decision. This is a list of questions to provide support after enough investigation and knowledge gathering has occurred. You can come back and listen to it again later.
0:53:39:85 Pamela D Wilson: Small decisions may be easier to make while decisions that can have life-affecting results may take you more time. There may be times due to unusual circumstances or constraints that you will have to make a decision within a certain time frame. Rushed decisions are never easy and it’s easier to make mistakes when you feel pressure. Do your best under the circumstances. Speak with others to ask their opinion. But know that the final decision or choice is yours to make.
0:54:12:93 Pamela D Wilson: Once you have made a choice or a decision, moving ahead to implement the choice can raise more unexpected concerns. Identifying a problem, researching the problem, identifying options, and making choices is a 4-step process that you can use over and over again in caregiving or any situation of your life. The more you repeat the process the more confidence you will have in measuring the outcomes of your decision.
0:54:48:00 Pamela D Wilson: The effects of care refusals may not immediately be seen when caring for a loved one or yourself. Some decisions take years to show results. Others are more immediate—heart attacks, strokes, breathing issues, health issues. Many of those concerns start 20, 30, or 40 years earlier. The best advice I can give is to take your health seriously at the youngest age possible if you want to sail through middle age and your later years in good health. Living a well-balanced life takes work. The consequences of saying no that are effects of care refusals can be surprising.
0:55:33:10 Pamela D Wilson: Learn from the care experience you gain with grandparents, your parents, and others. Without having a medical background the best way to learn is to watch and observe the lives of individuals who need care and the decisions that they are making about their care. Everyone has the right to refuse care. If you are a caregiver, it may be up to you to help aging parents or a spouse clearly understand the consequences of care refusals, saying no to a medication, or medical treatment.
0:56:07:85 Pamela D Wilson: If you are a caregiver you may have to set boundaries and refuse to commit additional time or money to the care of a parent or spouse so that you can preserve your health and well-being. Care refusals are not always a bad thing. Setting boundaries and saying no can be helpful to others who can care for themselves and make their own decisions.
0:56:34:09 Pamela D Wilson: If you are a caregiver choosing between continuing a current path of care or reducing the time you spend in care responsibilities, the same 4-step decision-making process applies. The added component may be feelings of guilt about not being able to continue to do all you have done. Do your best to recognize that you have contributed and have done a great job
0:57:03:72 Pamela D Wilson: . Realize that it’s now time for you to move on in your life. Just as it’s time for your loved one to move on to a different type of system to receive care. In the end, we are all responsible for ourselves and the choices that we make. Start today making good choices that will last you a lifetime.
0:57:27:66 Pamela D Wilson: If you are an aging adult or a caregiver not sure what to do or how to plan for care, or how to get your time and your life back, my website PamelaDWilson.com offers resources for caregivers. Check out my caregiving library, my Caring for Aging Parents blog, listen to all of The Caring Generation podcasts, read the show transcripts that include links to research by program guests, and check out my online caregiver courses in webinar format – it’s like binge-watching your favorite television show. You can also watch hundreds of videos on my Facebook and YouTube channels.
(0:58:03:04) Pamela D Wilson: There’s something for everyone at PamelaDWilson.com.This is Pamela D. Wilson, caregiving expert, advocate, and speaker. I look forward to being with you again soon. God bless you all. Love to everyone. Sleep well tonight. Have a fabulous day tomorrow and a great week until we are here together again.
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