I recently sat down with prize-winning author, researcher, health care advocate, and President and founder of Tree of Life Health Advocates, Dr. Ruth Linden, to shed some light on the health crisis we’re facing right now. It was a very informative conversation that I hope you will find as fascinating as I did.
I’ve provided Ruth’s information below in case you’d like to get in contact with her yourself. As always, never hesitate to reach out directly if you have any questions or would just like to chat.
Transcript from our call:
Ruth: I am here with health care advocate, Ruth Linden, who I wanted to have a conversation with since we’re going through a health crisis right now. Some of us are very blessed to be healthy, but even if we are blessed to be healthy ourselves, we may happen to have someone in our family who is sick, so understanding ways to navigate the healthcare system during this time and after is really important. With that, Ruth, do you want to tell us a little bit about what it is that you’re seeing right now with healthcare in regards to COVID-19?
Ruth Linden: Sure, I’d be happy to. In this particular moment, what we’re seeing with respect to COVID-19 is that businesses and hospitals are starting to open up. The hospitals are starting to open up with elective procedures being permitted. For example, I have an appointment next week at UCSF Mission Bay with a client and we’re going to see my client’s physician in person, but I also have video calls scheduled for other clients with UCSF doctors. So even within a health system like UCSF, different doctors are practicing differently in this COVID-19 moment.
The biggest challenge I’ve seen with my clients since we began shelter in place in March is that a number of these clients who were in the hospital, both with a COVID-19 diagnosis and also with other diagnoses unrelated to COVID-19, is that some of them needed to be discharged to skilled nursing homes or long-term care. As many folks may be aware, skilled nursing facilities are a hotbed of COVID-19. In Manhattan, 50%, and in the rest of the country, about 30% of COVID-19 cases are in skilled nursing facilities and long-term care facilities, infecting either residents or staff. So facilitating safe discharges in the time of COVID to congregate care settings for elders has been perilous. Permitting my clients to be discharged to skilled nursing has been very challenging because my job is to keep my clients safe, and no discharge to a skilled nursing facility – even one with zero COVID-19 infections among staff or residents – can be viewed as safe right now.
Ruth: These nurses are traveling around other sick people and in all kinds of facilities, so that must be a big challenge for people who need at home care, right?
Ruth Linden: Absolutely. Also, skilled nursing facilities don’t have adequate PPE. So they’ve been low on the priority list of sites to receive masks, gloves, shields, and PPE in general. That’s been horrific. Many hospitals have also been low on the list and have had to reuse masks or wash them – which, depending on the fabric the mask is made out of and how it’s washed or cleaned may not have been adequate to properly remove traces of virus – so there have been lots of problems. Traveling nurses and nurses who were caring for patients and residents in more than one facility have been a problem, as well as nurses or care staff who are going home to their families who may also be essential workers who are delivering groceries or working in stores that are serving the public and increasing the possible risk of infection that would then be brought back to the facility. There are lots of ways that transmission is possible. Those have been some of the challenges for skilled nursing facilities, as well as assisted living and other care settings, including hospitals.
Ruth: What is health care advocacy? I think some people don’t even know what exactly that is. How do I know if I need it?
Ruth Linden: How do you know if you need it? That’s a great question. Health advocacy (sometimes called patient advocacy) is a relatively new discipline, but the work I do as an independent health advocate has been done forever. Clients contact me when they are in many different kinds of situations. For example, sometimes they receive a bill with errors from a provider, so they ask me to review it and identify the problems.
In other cases a client may have received a devastating diagnosis with a treatment plan that they don’t understand. They are overwhelmed, so they meet with me to help them formulate questions for their physician about the treatment plan and diagnosis. I then help guide them through the process of making the best decision for the kind of treatment they want to receive, or don’t want to receive. Sometimes that means helping them obtain a second opinion.
Clients also contact me when they want to change doctors. For instance, their primary care doctor has retired and they need a primary care physician to oversee their care – they need someone who is in-network, someone who meets their requirements (i.e. women often want to see female internists or family practice doctors), or perhaps they want cultural concordance – they want a physician who is the same race or ethnicity as they are, or who speaks their language if they’re not native English speakers – or they need specialist cares, or they want to fire their doctor because they’re unhappy with the kind of treatment they’ve received.
Sometimes, family members may have a hunch it’s time for hospice for a family member (i.e. a parent, a sibling, or someone in their close circle of friends), but they don’t know if it’s really time for hospice so they need some guidance as to what hospice actually is, how to choose a hospice provider, and what are realistic expectations of hospice care.
It could also be time for a family member to move into assisted living and the family needs some guidance about that process.
We should all be thinking about preparing an advance directive in which we name an individual who can make decisions for us about the healthcare we want to receive, and that we don’t want to receive (that’s just as important as deciding the care we do want to receive). We have an opportunity to specify our wishes in writing, as well as to name the person we want to make decisions for us at such time as we may not be able to speak on our own behalf. I work with clients to prepare advance directives.
I inform clients about their patient rights as healthcare consumers and I help my clients and their loved ones stay calm in situations of crisis.
I received a call this morning from two brothers of a client of mine. My client had been admitted to a rehab facility with challenges related to his bipolar disorder, and he walked out of the facility. He disappeared in an unfamiliar city and nobody can find him. The two brothers were in a panic as to how they should proceed and what they should do if they are actually able to find their brother. So they called me in quite a state, as any of us would be in that situation. My job was to calm them down and advise them how to proceed and what steps they could take to try to contain the situation.
Ruth: Sounds like you’re an all-knowing mother or something How does one gain so much knowledge?
Ruth Linden: I have worked in and around healthcare my entire professional life. Before I founded Tree of Life Health Advocates in 2014, I was a professor. I’m trained as a medical sociologist and I hold a doctorate in medical sociology. I have advised the Food and Drug Administration on the ethics of clinical trials. I led a research study for a public health research organization in the East Bay studying diversity in nursing and other healthcare professions. I taught medical students at UCSF how to interview patients. I’ve worked in and around healthcare for a long time, and I’ve also helped family members and friends manage their own healthcare challenges in an informal capacity out of my affection for them and out of concern that they receive the best possible care for decades. When I decided to found Tree of Life Health Advocates, I had a lot of professional experience under my belt. At UCLA, I also completed a year long Certificate in Patient Advocacy. I’ve had specific, advocacy-targeted training as well as a full career that enables me to understand how the healthcare system functions and why it so often fails to function as we would like it to. The short answer to your question is that I’ve been around the block .
Ruth: Awesome. It’s definitely a stressful time whenever you’re dealing with a loved one who is sick. One of my friends started a profession similar to yours. She got into it because her mom had cancer, and she basically quit her job to try and navigate saving her life. It was a full time job to do that. Those are the cases where if you’re up against something really bad (especially if it’s for your parent or sibling, etc.) and you have a full time job and need some help, then it’s good to know there are professions like yours out there that have more experience and can help you instead of having you quit your job to do it yourself. And as you said, even when it comes to things like reviewing bills – that’s an interesting one, right? Because anytime I’ve ever had anyone in the hospital or even when I had my two babies, I looked at some of those bills and I thought, “Wow! Are they charging for a pillow?!” so I do think there could definitely be some misclassifications on those things that can add up very quickly.
Ruth Linden: It’s thought that up to 80% of medical bills have errors of one sort or another. Ruth, I want to go back to a question you asked – “How do you know if you need a health care advocate or a health advocate?” And the answer is, if you, as a consumer or a family member, feel overwhelmed by the process (whatever that process is), if your doctor has scheduled four different appointments for imaging and different kinds of testing, if communication with your doctors or your loved one’s doctors isn’t satisfying (and you know if it’s not satisfying, you feel it in your gut), if you don’t understand, those are all indications that it’s time to call a health advocate. Call an advocate and explain to them what’s going on, tell them how you’re feeling, and summarize the process. They can tell you if, perhaps, something has occurred that shouldn’t have occurred and offer suggestions about how to correct things. A healthcare advocate can intervene and help.
I do this with clients and prospects all the time. People call me and tell me what they’ve just been through. And sometimes, not always, my response is, “That shouldn’t have happened. You have a right to this or that or something else. And if you’d like to work with me, I can accompany you to appointments and teach you how to stand up for yourself. You can learn that by interrupting a dynamic that isn’t going the way I think it should go, I can create space for you to jump in and say what’s on your mind.” A big part of what I do with clients when I accompany them to doctor’s appointments is to teach them how to stand up for themselves so that I become obsolete in effect.
Ruth: That’s good. Put yourself out of a job – I do that all the time when I talk people out of selling when I ask them questions like, “Why do you want to sell your home? Create an investment.”
One of the things you mentioned was that doctors are doing more things remotely now – and I notice this in my own life too. My son had a doctor’s appointment the other day via his iPad. We had a little pulse monitoring device that we ordered so that we could tell the doctor his blood pressure and that sort of thing. It’s amazing to me that a lot of the stuff can be done remotely – and it was so much easier for me. I felt like the care was just as good and I didn’t have to drive somewhere or walk around other sick people. I’m wondering how much of this stuff will end up being here to stay with this kind of remote medicine.
Ruth Linden: That’s a great question. I don’t have a crystal ball, so I don’t know the answer, but I spoke informally with a nurse practitioner who told me that one of the things she has found is that 80% of her face to face patient visits are not actually necessary. 80% of the time she can accomplish what she needs to accomplish via video or telephone. I think that’s fascinating because before COVID-19, we were moving towards telemedicine under certain conditions. That wasn’t what doctors preferred, and it wasn’t necessarily what patients preferred. However, if you live in a city like San Francisco where it’s so hard to get from here to there, of course you’d prefer that. It will be very interesting to see where things go once we’re out of shelter in place. A lot of that will be determined to some extent by insurance reimbursement. I’m hearing that lots of client visits that are supposed to be reimbursed or covered by insurance are not being covered for video or telephone visits. We have a for-profit health system in this country, and that’s a real challenge because if commercial insurance and Medicare don’t step up to the plate and begin reimbursing video visits at the same rate as in-person visits, it’s not going to be a smooth transition. The reimbursement mechanisms have to shift.
Ruth: Right. Is there anything else you feel like people need to know about COVID-19 and how things are going to either develop with insurance companies or with doctors coming up in the next few months or years?
Ruth Linden: It’s very hard to know how insurance companies are going to address the reimbursement issues. With COVID-19 and sheltering in place, we know that there is only one state, which is Illinois, that has met all of the metrics for opening up. California meets some of the metrics, but not all of the metrics. That means that we need to proceed very slowly and with an abundance of caution in terms of resuming some of the activities like haircuts, going to cafes, shopping, and not wearing masks – we’re not ready for that yet. And we will see that when we look at communities that are casting abandon to the wind. After a couple of weeks, the incidence of COVID-19 infections will increase. So please move slowly, carefully, and prudently.
If you have any questions about whether a health advocate might be an appropriate next step for you, I would be happy to speak with any of your clients and friends about whether I can be of help to them, or whether there’s another resource or strategy I can recommend that will give them peace of mind, which is in the very end, what I always aim to offer my clients.
Ruth: Awesome. It seems that you have a really great and rewarding profession that’s definitely very needed. I have two things I thought of while we were talking. One is that we started a program we’re calling Gram-Pals, where we connect senior facilities in and around the Bay Area with kids who want to write to them or send them cards. The initial idea was that there would be a pen-pal situation, but what we’re learning is that a lot of these seniors actually can’t even write. The ones that can have written back some of the students and children, and the children are loving the reaction. We have a Facebook page where people are posting pictures of what their kids are writing and what they’re doing in order to encourage other people.
It’s been a fun project to spearhead. I started thinking about it because I have a great grandmother who’s at home and I just started thinking, “Gosh, my kids are here and they need to practice their writing, and they also need to practice being good humans.” This was a win-win from all sides, so I wanted to scale it. If you have connections to those senior centers, we’d love to be introduced to them and we can hook them up with other kids.
Ruth Linden: I’d love to do that.
Ruth: Awesome – I’ll follow up with you on that. I also had a connection to somebody who was able to get a lot of masks so I ordered a whole bunch to donate, but they took a really long time to get here and just now arrived. Now I’m not sure what the best place to donate them is. Do you know who needs them the most? Because it seems like the hospitals in the Bay Area might be okay now.
Ruth Linden: When you say quite a few – is it in the tens of thousands or hundreds or…?
Ruth: It was about $1,500 worth of masks, so it’s probably 300-400 masks.
Ruth Linden: Are they surgical masks or the kind you can wash?
Ruth: They’re the N-95 masks.
Ruth Linden: Oh, N-95 masks are a special case. Earlier this week I was reading that N-95 masks are not a good idea to use to protect against COVID-19 infection – I’ll have to go back to that article and send it to you. Now, we knew all along that N-95 masks are used if you’re a clinician, a nurse, or a physician and you’re intubating someone in the hospital. In those cases you need to use an N-95 mask. But for ordinary purposes, a surgical mask–that is, a disposable mask or a cloth mask for going out in the world and doing stuff like taking a walk, shopping, etc.–is fine. So N-95 masks are not needed for COVID-19 protection unless hospitals need them. I can help you drill down and get information about that. But remember, N-95 masks are used when we have fires and the air is smoky. I used an N-95 mask a couple of years ago when walking in the area around my office and home in North Beach during the Paradise fire and Camp fire because the air was just horrible.
Ruth: Yeah – that was bad.
Ruth Linden: That’s when N-95 masks for the general public are useful, but not for the general public for COVID-19. Let me do a little digging and get you some clarification. I would say hang onto those masks until there’s a fire, if we can’t find a hospital that needs them. Distributing them through community centers, schools, or childcare centers would be a wonderful thing to do in the case of a fire, because when it’s smoky, you just can’t breathe the air.
Ruth: I know – and we’ll probably have another fire eventually, which is one of the non-exciting parts of living here.
This talk was so great. I learned so much and I really appreciate you taking your time to have this conversation with me. I will include all of your contact information in this webinar so that anyone looking for help with healthcare advocacy can reach out to you.
Ruth Linden: Wonderful. This was a lot of fun. Thank you so much, Ruth.