Do Not Resuscitate: What is a DNR? – The Caring Generation®
The Caring Generation® – Episode 47 July 15, 2020. On this caregiver radio program, Pamela D Wilson, caregiving expert talks about the meaning of Do Not Resuscitate and answers What is a DNR? Guest Dr. Richard Balaban Director of the Department of Care Integration at Cambridge Health Alliance and Assistant Professor of Medicine at Harvard Medical School shares information from his article A Physician’s Guide to Talking about End-of-Life Care.
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Do Not Resuscitate: What Is a DNR?
00:05 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.
00:48 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert, I’m your host on The Caring Generation radio program, coming to you live from the BBM Global Network, Channel 100, and TuneIn Radio. The Caring Generation focuses on conversations about health, well-being, caring for ourselves and loved ones, all tied together with humor and laughter that are essential to being a caregiver. In this caregiver radio program, we will talk about do not resuscitate and I’ll answer the question of what is a DNR.
01:22 Pamela D. Wilson: Discussions and news about the coronavirus have us talking. It’s increased awareness about end of life concerns. The elderly and people with chronic diseases are more susceptible to the virus. We all know that, and in some cases, unfortunately—the result is death. When the coronavirus began, the news was obsessed with the idea of not having enough ventilators, without anyone really talking about—what is a ventilator, and what does being on a ventilator mean?
02:00 Pamela D. Wilson: I found out that very few people truly understand the meaning of a ventilator. The ability to be placed on a ventilator—it’s not always a life-saving measure. So why do we have all of this confusion? In part, it’s because doctors don’t know how to talk to patients about end of life care. Some of them are very good, very compassionate—in talking about that. Others are not, and I find that the news sometimes just wants to scare us. To talk about end of life care, our guest for this program is Dr. Rich Balaban. He is Medical Director of the Department of Care Integration at Cambridge Health Alliance.
02:40 Pamela D. Wilson: He is also an assistant professor of medicine at Harvard Medical School. He’s an innovator in care transitions and developing cost-effective programs to support patients after hospital discharge. Dr. Balaban is also the author of A Physician’s Guide to Talking About End of Life Care. End of life care is more than the idea of do not resuscitate. End of life concerns include fear about dying, understanding a prognosis, which means how a health diagnosis might advance. End of life care includes physical care needs and, most importantly, knowing what a person—our elderly parents or the person that we’re caring for—wants and does not want for care.
03:28 Pamela D. Wilson: Talking about end of life care can bring us to the question of, “What is a DNR?” A DNR is a form that you can get from your doctor, or sometimes the hospital, if you’re having a scheduled procedure or if an elderly parent goes to the emergency room as a result of an accident. What questions are on that do not resuscitate form? The first is, “do you want cardiopulmonary resuscitation?” That’s what CPR stands for. What does that mean? If a person needs resuscitation, it means that the body doesn’t have a pulse, and the body is not breathing. In medical terms, that’s called cardiac arrest, and it means that the body, the person, is dead but that sometimes treatment can be provided. That treatment is called CPR or another type of resuscitation that they do in the hospital. Performing CPR doesn’t save a life by itself. CPR, if you are a medical responder or you’ve been trained in CPR, you know that it’s a set of motions. It’s chest compressions and breath to move some oxygen throughout the body until those medical personnel can arrive and do whatever they have to to get the body, get the heart, started again. CPR, according to statistics, is successful in only a small number of cases, between two to eighteen percent.
04:47 Pamela D. Wilson: If you’ve watched any of the medical doctors shows on TV, you might see the doctors using that machine—it’s called a defibrillator. Sometimes those are out in public locations, and it gives the heart of shock so that the heart can start beating again. Some people who have heart disease and irregular heartbeats, some of those people choose to have a pacemaker, or there are implantable cardioverter defibrillators, those are called ICDs. And that helps monitor the heart, and it can restore an abnormal heartbeat. The first choice in talking about do not resuscitate, and what is a DNR is that question, “do you want CPR? Yes or no?”
05:27 Pamela D. Wilson: If you’re uncertain about making a do not resuscitate decision, talk to your doctor about that. There’s also a podcast interview on my website with Dr. Michael Gordon, he’s a palliative care specialist, and he specifically addresses what happens if you say yes or no to CPR. I’ll put a link in the transcript of this program so that you can listen to that. While the success of CPR is low to high, depending on your age, it’s less successful in older people. In younger and healthy people, it can be more successful. Older people who have chronic diseases sometimes will talk to their doctors and say, “if I have CPR and I survive, what will my health be like?” That’s a great question to ask your doctor. The same question applies to the decision to be placed on that ventilator. Ask your doctor, “what would life look like if I was on a ventilator and I survived? Would my life be better? Would I be healthier? How would that work out?”
06:24 Pamela D. Wilson: If you don’t know what a ventilator is, it’s a machine that helps the body breathe during surgery or as the result of a severe illness, much like the coronavirus. A tube is placed in the mouth and down the throat, and it helps the lungs breathe. It sends oxygen, and the technical term for that is called intubation. It’s a term that you may have heard but maybe didn’t know what it means. And so the goal of using a ventilator with the coronavirus is to give physicians enough time to treat that infection in the body so that the body can come off the ventilator and you can breathe on your own, and you can recover. A ventilator is life support. A lot of people don’t realize that. In talking to elderly parents about do not resuscitate, how many of your parents say that they don’t want their lives to be extended by machines? That ventilator is a machine.
07:17 Pamela D. Wilson: In all of the discussion about the coronavirus and ventilators, do you or did your elderly parents understand that that ventilator is life support? Does knowing this change your mind or the mind of your elderly parent about a do not resuscitate order, about what is a DNR? What are your thoughts? Yes or no? The answer to this question leads us to the second item on a DNR form, it’s medical interventions, and we’re going to talk about those in a minute with Dr. Rich Balaban. But if you choose no to CPR, there’s no need for medical interventions because you’re choosing not to be resuscitated. If you choose yes on that document, that means that you want treatment at different levels. Full treatment, intermediate treatment. Full treatment, though, can mean that life support—that is that intubation, that is that ventilator.
08:08 Pamela D. Wilson: We’re going to continue this conversation about, do not resuscitate, and what is a DNR in the second half of this caregiver radio program. Up next, we have Dr. Rich Balaban, Medical Director of the Department Of Care Integration. He is with Cambridge Health Alliance. He is also assistant professor of medicine at Harvard Medical School. He’s going to share information from his article, A Physician’s Guide to Talking About End of Life Care. This article is used in a lot of education programs. For physicians who are not familiar with this, we’re going to find out why they don’t talk more about this in medical school. He’ll share more information about end of life care conversations that doctors should have with the patients, but may not. Helpful information and practical tips for caregivers and aging adults are in my Caring for Aging Parents Caregiving Blog on my website www.PamelaDWilson.com. This is Pamela D. Wilson on The Caring Generation, live on the BBM Global Network, Channel 100, and TuneIn Radio. Stay with me. We’ll be right back.
11:33 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert, I’m your host, this is The Caring Generation radio show for caregivers, live from the BBM Global Network, Channel 100, and TuneIn Radio. Joining us is Dr. Rich Balaban from Cambridge Health Alliance. Dr. Balaban, thank you for joining us.
11:51 Dr. Rich Balaban: Well, thanks for having me. It’s a pleasure to be here.
11:54 Pamela D. Wilson: So I found you through an article, and the article confirmed my experience that families expect physicians to initiate conversations about end of life care. What prevents physicians from doing this?
12:10 Dr. Rich Balaban: Well, that’s a great question. I think in the medical world today, everything moves very quickly, and everyone feels rushed, and I think we all feel like we don’t have enough time, and I think that’s actually true. In the typical appointment —doctors, we have about 15, 10, 15, 20 minutes for a visit, and it’s really a short amount of time to do everything that needs to be done. We first need to learn about why somebody has come in. What is their current problem? Maybe somebody is coming in with back pain. Then we need to check in on ongoing medical issues, like diabetes or high blood pressure. Then we need to determine if there are any screening studies, like a mammogram or a colonoscopy that needs to be done. And, of course, we like to ask people how they’re doing, how is the family, how’s their job, their school. So it doesn’t leave a lot of time to talk about end of life care.
13:07 Dr. Rich Balaban: Now, fortunately, since 2016, Medicare will pay for a visit to your doctor to have a discussion about advanced-care planning, which is really just a fancy name for end of life care. And I would highly recommend to people, especially if you’re old enough to be on Medicare if your doctor hasn’t proposed to you—to schedule such a visit. That you should take the initiative to schedule such a visit with your physician. Because to have an appointment that’s really devoted to this kind of discussion, I think allows everybody to do so in a much more relaxed and ultimately meaningful manner.
13:47 Pamela D. Wilson: Well, and thank you for bringing that up. Because I think, to your point, a lot of people don’t know about that Medicare visit, so that is so important for you to bring up. So the next question would be, you make the appointment with your doctor for an advanced care planning visit, why is it important to have that conversation with your doctor?
14:07 Dr. Rich Balaban: Well, another good question. So, in a study, when people were asked, “where do you want to spend the final days of your life?” Ninety percent of people say that they want to spend their last days at home. Then when we look at what actually happens, we find that only a third of older people spend their last days at home. While two-thirds of people spend their last days in the hospital. So this says to me that a lot of conversations that should have occurred between patients and their doctors didn’t occur. So that’s why it’s so important—and I think we all need to be honest with ourselves—that as we get older we may someday develop a terminal illness or we’ll just get to the point where our bodies just are beginning to slow down.
15:02 Dr. Rich Balaban: So it’s really important that as we get closer to the end that our doctors know what kind of treatments we want to receive. Now, I don’t mean that you need to tell your doctor what kind of medications he or she should give to you. That’s our job as the doctor. But we do need to know what your preferences are. Do you want very aggressive treatment that may have a lot of side effects potentially? Some people are willing to tolerate that. Younger people, or those who are just beginning to fight against a serious illness, those people will often desire the most aggressive treatments, and that’s the right thing for them. But if somebody has been sick for a very long time, many years, and all the aggressive, strong treatments have been tried, and they’re no longer working, well that person may prefer to have a more gentle treatment with the emphasis on remaining at home and being comfortable for as long as his or her body is able to continue. So these sorts of decisions as to what kind of treatment and where you want the treatment to occur, these are the kinds of decisions that are important that you make in partnership with your physician.
16:21 Pamela D. Wilson: And to your point, people saying that they want to be at home at end of life, I’m going to bring up the H-word [chuckle] because a lot of people don’t like this word. But do doctors then talk about hospice care? Because I think that scares people.
6:35 Dr. Rich Balaban: Well, hospice care is usually one of the final components of the discussion. I think there are a lot of things that should occur prior to the discussion about hospice, that I think we’ll talk about these, and if we handle it in a proper way, then hospice really becomes a very natural part of the whole conversation that really is initiated probably at a relatively early age. I think one of the first things that we all need to talk to our doctors about is appointing a healthcare proxy or a power of attorney, so this is a person who could speak to your doctor on your behalf if you were ever to become so disabled that you were unable to speak for yourself.
17:31 Dr. Rich Balaban: So that’s a great way to begin discussions. In terms of discussing very specific treatments that you may or may not want to have, it’s really difficult to understand different options until you are faced with real decisions. But as we’re getting older, it’s good to have some of the general discussion that I’ve mentioned, with your doctor. So, what’s most important to you? How do you want to spend your remaining time, and as the end ultimately approaches, where do you want to spend your final days?
18:09 Pamela D. Wilson: And we’re going to head out to a break. So think about this. My next question for you is going to be for these younger people who are healthier. Should they still have these types of discussions with their doctors, even though death may be a long time off, or can an accident happen, and this conversation would be something important that these people should be having now? And related to that, will insurance pay for that or is that—how do they have those conversations? So, listeners, we’re going to continue our conversation with Dr. Rich Balaban from Cambridge Health Alliance about end of life care discussions with physicians and patients, after this break. This is Pamela D. Wilson on The Caring Generation, live on the BBM Global Network, Channel 100, and TuneIn Radio. Share this radio program with caregivers, with aging adults, with everyone you know, because we talk about caregiving, health, and other topics. Stay with me. We’ll be right back after this break.
21:23 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert, I’m your host on The Caring Generation, live on the BBM Global Network, Channel 100, and TuneIn Radio. We’re back for more on the subject of end of life care discussions with Dr. Rich Balaban from Cambridge Health Alliance. So doctor, answer the question about if we’re relatively young, should we be having these conversations with doctors, or what should we be talking about relative to end of life?
21:49 Dr. Rich Balaban: Yes, I think for people who are relatively healthy and young, I think the most, as I said, practical thing is you can talk about appointing a healthcare proxy or power of attorney. It’s very difficult to talk about unexpected occurrences that might require life-sustaining treatment when people are young. The other thing though that I would say is that when we do initiate these discussions, even if in general terms the subject of death, which is really generally relatively taboo in our society, becomes a little less scary to talk about. So, once we initiate these discussions in the doctor’s office, patients and families often will feel comfortable about continuing the conversations outside of the doctor’s office. And when a patient becomes sicker, if we have talked about these things all along, it just becomes much easier to re-open the discussion when it’s really more critical to have it.
23:00 Pamela D. Wilson: And for older people who are in and out of your office and they have a lot of chronic diseases, how does that help support these conversations?
23:09 Dr. Rich Balaban: Well, in today’s world, many people have chronic conditions and are living for many, many years with these conditions. So it gives them a long time to get to know the doctor. Doctors get to know them well and to really understand the kinds of things that are important to that particular person. I think as time goes on and as people get sicker, I think there are two things that are really very important to discuss with people. The first thing is that it’s really important that the patient and doctor understand the prognosis that a patient has with their chronic disease. And this is particularly important because if people have a poor understanding of their prognosis, I think most of us will tend to think that—or overestimate our survival. So, having a realistic good sense of prognosis is so important, and it’s sort of the underlying basis of all these discussions of how we can have this shared understanding of what’s going to happen in the future.
24:33 Dr. Rich Balaban: Now, on the other hand. It’s important for doctors to acknowledge that we do have limitations in predicting the future. So, we may know, for example, that the average person does well for two years with a specific disease, but a given individual may do better or may do worse. So it can be difficult for us to predict, but I think it’s often good for us as doctors to share whatever uncertainty that we may have. On the other hand, as a terminal…
25:05 Pamela D. Wilson: And is it…
25:08 Dr. Rich Balaban: I’m sorry?
25:09 Pamela D. Wilson: Go ahead, go ahead.
25:09 Dr. Rich Balaban: I was just going to say, as a terminal disease progresses, the uncertainty diminishes. So it’s really important that these conversations are handled on an ongoing basis.
25:21 Pamela D. Wilson: And so those conversations, is it like—I don’t know if you have percentages—but does the doctor mostly bring up prognosis or is it really up to the older adult or their children who are the caregivers to say, “doctor, what can we expect from this?” Who has to start those, or who should start those conversations?
25:41 Dr. Rich Balaban: Well, I think it can go either way. I think at some point if there is a limited life span expected, then it’s really incumbent on the doctor to initiate such a discussion. But again, if this is a topic that’s come in and out of conversation over some years, hopefully, the family and the patient themselves will feel comfortable raising the topic with a doctor. And it is absolutely critical that there are not be any misunderstanding about the prognosis. Especially as things come to an ending because then the best kinds of decisions will be made.
26:24 Pamela D. Wilson: Well, and I know that caregivers, sometimes parents live in one part of the country and their children may live somewhere else, and mom or dad gets sick and all of a sudden the kids show up. And maybe you’ve had this conversation with the parents before, but the children have no idea how serious it is. So the kids come to the doctor’s office with their parents, they don’t know to ask. Do you have to get permission from your patient, who is the parent, to bring up this discussion? How does that work?
26:55 Dr. Rich Balaban: Well, I think these discussions are best held when the family and the patient are in the same room together. I think once we start having individual discussions with individual people in the family, the possibility of misunderstanding goes up dramatically. So I always insist, if possible, that everybody take part in the same conversation. So that if there are misunderstandings, we all handle it together as a family.
27:32 Pamela D. Wilson: And doctor, you have this wonderful article, that is how I found you. If people are interested in getting a copy of that article or learning more about your work and what you do, how can they do that? Can they find you on a website, is that article somewhere that people can access it?
27:49 Dr. Rich Balaban: Sure, I assume that you have a website, and we can certainly make the article available there.
27:56 Pamela D. Wilson: Yes.
27:56 Dr. Rich Balaban: This is an article that I wrote some years ago, but I think the basic concepts are still very relevant, the importance to really promote good communication between patients and their doctors.
28:11 Pamela D. Wilson: Yes, I will put the article on the website. Thank you for your permission. I’ll put the article in a link on my website along with this show transcript. Doctor, thank you so much for joining us. This was such an important conversation that I think families don’t have enough, and that people—I think people need to know now that they can use their Medicare benefit and go talk to doctors about this. Listeners, you can share, like, and follow the show. This podcast will be available in about a week on the website, along with the show transcript. This is Pamela D. Wilson, your host on The Caring Generation. You are with me live on the BBM Global Network, Channel 100, and TuneIn Radio. Stay with me. We’ll be right back after this break.
31:07 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert, I’m your host, you’re listening to The Caring Generation radio program for caregivers and aging adults, live from the BBM Global Network, Channel 100, and TuneIn Radio. The Caring Generation focuses on the conversation of caring, giving us permission to talk about aging, the challenges of caregiving, health, and everything in between. Let’s return to answer your questions about do not resuscitate and what is a DNR. The reason that I’m familiar with this information is personal experience. I served as a court-appointed guardian and a medical power of attorney for elderly and disabled clients.
31:48 Pamela D. Wilson: For more than ten years, I was that legal decision-maker, like you, might be. I had to familiarize myself with all aspects of do not resuscitate orders and talk to my clients about what is a DNR so that I had a clear understanding of what they wanted for care. Like we talked about doing with Dr. Balaban.
32:10 Pamela D. Wilson: Before we return to talking about the do not resuscitate form, I want to talk for a moment about a living will document. A living will document that is usually completed at the same time that you or an elderly parent completes the legal documents, to name a medical or a financial power of attorney. And sometimes—at the same time—you might complete your will or a trust. A living will allows for more detailed information about end of life wishes. A living will and a DNR, or do not resuscitate form, can be used together. The DNR form has three parts, usually A, B, and C, for instructions. In a living will you can be very specific what you want for these questions in the DNR form—the do not resuscitate form. You can also add more instructions. So, what is a DNR? As we discussed in the first part of the program, the first part in that DNR is your choice to have CPR or not, so it’s a yes or no. And then we talked about treatment, so you can say if you do want CPR—it’s full treatment.
33:18 Pamela D. Wilson: So full treatment means taking all the steps to keep the body alive. This can include being put in the intensive care department of the hospital. Option two in that section about medical interventions in a do not resuscitate document is what’s called selective treatment. The wording and I’ll use the Colorado document because that’s where I live, states that, “selective treatment is treating medical conditions while avoiding burdensome measures.” Now, seriously, the word “burdensome measures.” It’s another of those medical-speak terms that most people don’t understand. And seeing the word “burdensome” can make a person feel bad about wanting treatment. As if the person who is sick is a burden or a financial expense to the medical system. In my opinion, putting that term in the document shouldn’t be there. It’s enough to make anybody feel bad about wanting medical care. And it’s no wonder then that consumers look at these documents and they worry about making a mistake when you’re completing these forms. While you’re asking what is a DNR, or you might be afraid to ask about the meaning of the words on the form when you’re completing it and signing it. Never be afraid to ask questions.
34:29 Pamela D. Wilson: So let’s talk about what burdensome care might mean. It could mean any type of experimental treatment. Like getting an artificial heart. In some cases, it could mean participating in a clinical study or a clinical trial that tests a drug or a treatment that may or may not be successful. Some people at end of life, my brother, did this—participate in clinical trials with the hope that that trial may change the course of a disease. Burdensome care, as mentioned in that do not resuscitate document, could mean treatment that causes unpleasant or painful side effects that outweigh a benefit. So, for example, it could be chemotherapy that’s making your mom or dad so sick, rather than helping them feel better. The person then continues to feel worse. Health continues to decline, and you’re wondering—why are we doing this?
35:20 Pamela D. Wilson: What is a DNR? In the selective treatment section, it will say, we want to use IV antibiotics and IV fluids.” You can say there, don’t use a ventilator. You can say, “transfer me to a hospital, but I don’t want to go to intensive care—that’s considered full treatment. And then the other option in the section about medical interventions is comfort-focused treatment like we talked with Dr. Balaban. In my opinion, comfort means you don’t want extensive measures. It can eventually mean hospice or palliative care. It can mean that you don’t want to go to the hospital for any treatment or you want to go to the hospital only if you’re so uncomfortable that you can’t receive pain medications at home. I’ve had clients who have done that.
36:06 Pamela D. Wilson: The medical intervention part of this DNR document, it’s a very, very important section, that shouldn’t be completed without serious thought and conversations with a doctor about the meaning of all the treatments, about the prognosis, talking to your family about it. The best thing that anybody can do, in my opinion, is to create an extensive living will document after you talk about all of these issues. Because a living will can take into account unexpected events. When I had living sills completed for my clients, I always made the DNR form refer to the living will document by writing these instructions on the DNR form. And I did the same thing with the living will, and I’ll say that sometimes by doing this drove medical providers crazy, because as Dr. Balaban mentioned, sometimes they are time-pressed. But I always checked “Yes” to CPR, and I always checked “Yes” to full treatment so that we had as many options as possible.
37:08 Pamela D. Wilson: That can kind of frustrate hospitals and doctors, because sometimes if they haven’t had the conversation then they have to, but I believe that these conversations really, they should happen. Families need to understand what can happen. Older adults need to know what can happen. This didn’t happen with both of my parents. While it may be a little bit more work for medical providers, it’s better for you. It’s better for the elderly. And the risk though, if you check “Yes” to CPR and “Yes” to full treatment is that if you don’t have a medical background and you are that power of attorney, you have to be the one to ask the questions, to evaluate the pros and cons of medical treatments and decisions. Sometimes if you don’t know what you’re doing, doctors can involve the hospital ethics committee to decide if you’re making wise decisions.
37:55 Pamela D. Wilson: I’ve also had the opposite happen. I’ve had clients who were adamant about no CPR, and the hospital put my client on a ventilator. In that case, I referred back to the do not resuscitate document and the living will and asked the hospital to follow those written orders, because my client didn’t want to be put on a ventilator. He wanted to pass away. So as you might imagine, people who are appointed as a guardian or a medical power of attorney, it’s a lot of responsibility because it’s up to you to talk about life or death decisions and about medical care and to really know what your elderly parents want. We’ll continue to talk more on what is a DNR, do not resuscitate, after this break. You can follow me on social media. My Facebook page is PamelaDWilson.page. This is The Caring Generation, coming to you live from the BBM Global Network, Channel 100, and TuneIn Radio. Stay with me. We’ll be right back.
41:11 Pamela D. Wilson: This is Pamela D. Wilson, caregiving expert, author, and speaker on The Caring Generation, coming to you live from the BBM Global Network, Channel 100, and TuneIn Radio. Information for corporations and human resource departments about caregiver wellness programs, training, and education, are on my website at www.PamelaDWilson.com. Let’s continue our conversation about do not resuscitate and what is a DNR. The next section, usually, on that DNR form, is Section C, and it talks about artificially administered nutrition. In a perfect world, we and our parents, we eat, we drink by mouth. In the Colorado document, there is a statement, “Any surrogate decision, legal decision-maker, medical power of attorney, a proxy, a guardian or other person, must follow the directions in the patient’s living will, if any.”
42:06 Pamela D. Wilson: What’s interesting about this is—this section refers to using the living will. Other sections on that DNR form do not. This takes me back to the importance of creating a living will and being very thorough in expressing your wishes to the very smallest detail. At the time that a spouse, a parent, or other family member is having a lot of chronic health issues—they’re at the end of life. The last thing you want to be doing is to be arguing with a doctor or a hospital ethics committee about information written on the DNR form, versus information listed in a living will.
42:42 Pamela D. Wilson: So, Section C in that Colorado document has three options: Artificial nutrition by tube long-term or permanent. Artificial nutrition by tube short term or temporary. Or no artificial nutrition. Going back to having a living will, you or an elderly parent can say that you want full treatment, and then you can allow that Medical Power of Attorney or guardian to make decisions based on the medical condition at the specific time relative to artificial nutrition. This means that on that document, you would check that box that says “artificial nutrition by tube” if that’s what you want. So here’s a real-life situation of one of my clients when I was a guardian. When I began working with this client, a feeding tube was permanent because he had a stroke and he was having swallowing issues and aspiration, which is breathing fluid into his lungs.
43:34 Pamela D. Wilson: He was able to do pretty good with hands-on care support. So the DNR for that person did say “artificial nutrition by tube, long-term and permanent.” But as he aged, over time, his health became worse. As all of ours will when we get older, and that feeding tube started to cause issues with fluid going into his lungs and him having frequent pneumonia that necessitated him going back and forth to the hospital. And after several trips of that and him just feeling horrible, we started talking to the doctor about the fact that, you know, this probably, unfortunately, was not going to get better, and it would be a constant struggle, and it was very hard on him. So we agreed that we were going to put the client on hospice care and just take comfort measures to keep him comfortable. Allow him to pass away. Because the trips back and forth to the hospital were just too much.
44:28 Pamela D. Wilson: It was a situation where I had full decision-making power, and the doctors agreed. In that case, it really was the best-case scenario. Even though it was a very difficult decision that you as that legally responsible person may have to make. But when you know what your parents want, at least you have the peace of mind that you’re following their instructions. Making end of life decisions about do not resuscitate and what is a DNR, honestly, it can be emotionally draining. Because you may feel like I did, that you are ending the life of a person. And end of life care, it can be very time-consuming if you are that guardian or medical power of attorney. You might be in daily contact with the hospice company who will call to give you updates, or a care community who will call to give you updates.
45:18 Pamela D. Wilson: But it’s a very worthwhile situation for an elderly parent because they know that you are that trusted person who is going to do what they want to do. Decisions are made easier if you live in the same town as your elderly parent because then you can visit and you can see the condition of your parent. You can talk to the care providers, the doctors, the care staff, you can ask about their observations. The more information that you have, the easier it is to make these decisions about do not resuscitate and what is that DNR.
45:50 Pamela D. Wilson: The last part of the DNR form is titled “discussed with, ” and this is an area where there are checkboxes that say that the patient, which is you, or an elderly parent or spouse, discussed this with the doctor. The agent under medical durable power of attorney discussed this with the doctor, or the proxy did. There are signature sections for the patient or the legal decision-maker and the physician, along with the date that the document is signed. If you have legal documents, a medical and financial power of attorney, a guardian document, a living will make sure that these documents go along with that DNR form.
46:28 Pamela D. Wilson: If you want the DNR form to refer to the living will write that on the DNR as a special instruction. As well as directions for people to call you if you are that legal decision-maker. My recommendation is not to leave any decisions related to do not resuscitate and what is a DNR to chance or leave any type of vague instructions. While the coronavirus has brought a lot more attention to end of life care, still only a small percentage of individuals have one of these DNR forms, the do not resuscitate form, or even a living will. As the virus is showing, young people can carry the virus, and while many of them are not significantly affected, some younger people have died. The question to ask about a DNR, and having a do not resuscitate document is, “do you want to be in control of your life and your end of life care decisions, or do you want to leave those decisions up to a hospital or an ethics committee to make those decisions for you if you don’t have those forms? The choice is yours. Now is the time to begin discussions within the family about end of life care. If you are an older adult, use that Medicare benefit, the Medicare Advanced Care Planning benefit, to make an appointment with your doctor—it’s paid for by Medicare—to talk about end of life care, life support, extreme measures to prolong life.
48:00 Pamela D. Wilson: What kind of care do you want? Do you know what your elderly parents want? I know that these discussions can be very uncomfortable. Just like we don’t want to talk about needing care or caregiving, we put these off. We say, “oh, we’ll talk about it later.” But we really can wait too long to have these discussions, especially if our elderly parents have chronic diseases or a diagnosis of memory loss. A lot of information about managing care for elderly parents is in my book. It is called The Caregiving Trap: Solutions for Life’s Unexpected Changes. Information about that is on my website, at www.PamelaDWilson.com. Do share information about this radio program with other people you know. One in four people are caring for elderly parents. I’m Pamela D. Wilson, caregiving author, expert, and speaker, this is The Caring Generation, live from the BBM Global Network, Channel 100 and TuneIn Radio. Stay with me. We’ll be right back.
51:18 Pamela D. Wilson: I’m Pamela D. Wilson, caregiving expert, I am your host. This is The Caring Generation radio program for caregivers and aging adults, live on the BBM Global Network, Channel 100, and TuneIn Radio. Visit my website, www.PamelaDWilson.com for helpful information. Encourage your human resource department to check out my training and development program for caregivers. It’s called Taking Care of Elderly Parents: Stay at Home and Beyond.
51:46 Pamela D. Wilson: And I thank you all for being here to talk about this important but challenging subject, do not resuscitate, and what is a DNR. I know it can be kind of uncomfortable. The idea for this, and all of the radio programs, come from caregivers in my groups, including my caregiver group on Facebook called The Caregiving Trap that you can join. If you have ideas for future programs, you can send me an email through the Contact Me form on my website at www.PamelaDWilson.com. Coming up next week, we’re going to be talking about how to manage feelings of social isolation. Before COVID, many elderly adults were living in social isolation, and this wasn’t anything that we talked about. Today, people of all ages may be feeling socially isolated, frustrated, stressed, and depressed. What can people of all ages learn from isolated seniors? Join me next week for the answer. Let’s return to the idea of do not resuscitate and choosing a person to be a Medical Power of Attorney to help with decision-making.
52:52 Pamela D. Wilson: As you can see by the discussions during this program, being a medical power of attorney, or a guardian, it’s a very serious responsibility. It’s not for everybody, including sometimes the children of elderly parents. Can you see yourself taking a parent off life support or refusing a treatment that you know your parent would not want if that meant your parent would die? If you are a parent or an older adult listening, do you have children who will follow your instructions and make the decisions that you want about your healthcare and financial matters? Trust is a massive issue in talking about do not resuscitate and legal planning. What do you do if you don’t have adult children that you trust or who can act in the role of a power of attorney? What do you do if you don’t have family members to act in these roles?
53:46 Pamela D. Wilson: Professionals exist who can serve as a court-appointed conservator or guardian, and a medical or financial power of attorney. For 11 years of my 20-year-plus career in the caregiving field, I served in this legal role for clients. It’s not easy as a family member. It’s not always easy as a professional. Professional fiduciaries will follow the instructions provided. That was the reason that husbands and wives chose me to act for their sick spouse—elderly parents appointed me instead of their adult children and family members. Options exist. If you feel stuck figuring out who to name for these responsibilities if you don’t have anyone trustworthy that you can appoint, or really anyone, you can go to the website guardianship.org. You can type in the area of the country where you live, and you can find professional fiduciaries, like the role that I used to fill. You can also ask your local Office on Aging, Adult Protective Services, or an elder law attorney for recommendations.
54:53 Pamela D. Wilson: As always, it’s up to you to interview and make sure that you find the right person to help you make medical and financial decisions and serve in these legal roles. Caregivers, family, and professionals give serious thought to completing your do not resuscitate and legal documents. More information about power of attorney is also on my website, www.PamelaDWilson.com, go to the search bar. You can type in the words “power of attorney” and helpful information will show up. Caregivers, continue to ask for the help that you need from your families, from the workplace, from everyone. Caregiver support is here on my website, www.PamelaDWilson.com, and on this show, every Wednesday night on The Caring Generation radio show. Invite your family, your friends, and your co-workers to join us. I am a Pamela D. Wilson, caregiving expert advocate, author, and speaker. God bless all of you caregivers. Thank you for what you do. Sleep well tonight, have a fabulous day tomorrow, and a great week until we are together again.
55:53 Announcer: Tune in each week for The Caring Generation with host Pamela D. Wilson. Come join the conversation and see how Pamela can provide solutions and peace of mind for everyone, here on Pamela D. Wilson’s The Caring Generation.