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00:00:01
Lisa Berry Blackstock: The Five Root Canals That Changed Everything
33 Plays1 day ago
In this episode, Eric talks with independent patient advocate Lisa Berry Blackstock about a reality few people think about until it is too late: modern healthcare is increasingly difficult to navigate alone.
Lisa’s path into advocacy did not begin in medicine. It began with pain. After experiencing debilitating electric shocks in her face, she spent months searching for answers and ultimately underwent five unnecessary root canals before discovering the true cause: a rare nerve disorder called trigeminal neuralgia. That experience revealed something unsettling. Even intelligent, persistent people can become overwhelmed and vulnerable when they enter a healthcare system during moments of crisis.
The conversation explores the role of patient advocates and the growing complexity of healthcare systems. Lisa explains how insurance structures, hospital incentives, administrative pressures, and fragmented care models create environments where mistakes and missed signals become easier. She argues that advocates are not simply administrative assistants. They can serve as navigators, translators, and safeguards for patients and families during some of life’s most difficult moments.
At its core, this is a conversation about preparation. About vulnerability. And about finding ways to maintain agency in systems that often feel too large and complicated to understand.
Topics Covered
- Lisa’s misdiagnosis journey and five unnecessary root canals
- How trigeminal neuralgia changed the course of her life
- What independent patient advocates actually do
- Why healthcare has become harder for patients to navigate
- The difference between hospital advocates and independent advocates
- Why teaching and research hospitals can matter in complex cases
- The hidden role incentives play in healthcare systems
- How insurance structures shape care experiences
- Why many people delay healthcare planning until crisis hits
- Defining quality of life before emergencies happen
- The relationship between aging, isolation, and wellbeing
- Physician burnout and administrative pressures
- The unintended consequences of healthcare policy changes
- Why healthcare preparation should resemble estate planning
- How advocates help patients maintain agency during crisis
Episode Links
- Check out Lisa’s conversation with Jess Villegas for a more in depth version of her story:
- On Spotify - https://open.spotify.com/episode/7GKDdOlRr2hAjSvz7jObGs?si=hmp5pDjwTzWrWeEBjNtLjQ
- On Apple - https://podcasts.apple.com/us/podcast/the-leaders-commute-podcast/id1871575343?i=1000749890031
- Eric’s conversation with Annalee Kruger - https://unfoldingthought.com/annalee-kruger-the-invisible-patient-and-the-cost-of-caregiving/
- Soul Sherpa Solutions - https://soulsherpasolutions.com
- Lisa’s business - https://soulsherpa.net
For more episodes: https://unfoldingthought.com
Questions or guest ideas: eric@inboundandagile.com
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Transcript
00:00:02
Speaker
Lisa, thank you for joining me. Where does today's recording find you? ah Finds me ah in the beautiful Sierra Nevada mountains more in, in I would say, early summer than the first day of spring.
00:00:20
Speaker
But you also find me very grateful that it is a Friday afternoon. Would you mind telling me a bit about yourself? First of all, I appreciate the invitation. It's always nice to be invited to share my perspective on what's happening and continues to happen in healthcare in this country.
00:00:43
Speaker
um i work as an independent patient advocate and help people not only across the United States, but also um people from different countries who find themselves in the U.S. either for business or for pleasure and end up unexpectedly needing medical care, find themselves in an emergency room, um and their insurance from their home countries are not accepted in the United States.
00:01:16
Speaker
And they end up, um you know, really being swallowed up by a system that tends to swallow up every patient um that enters into ah it's it's realm nowadays. So I e came into this field quite accidentally, um only as a byproduct of being misdiagnosed for a serious nerve disorder.
00:01:45
Speaker
Finally being correctly diagnosed um with with a very painful condition called trigeminal neuralgia and ended up needing major brain surgery ah to correct a ah defect at my brainstem.
00:02:02
Speaker
So this was in 2007, 2008, and it was only because of my experience um in a much more benign healthcare system back then um of being misdiagnosed of not being referred properly to to experts in the field who really could help me, along with the all too familiar ah battle with insurance to cover an out-of-network provider that I came to um
00:02:38
Speaker
a space where i was successful, thankfully, in getting the correct diagnosis that I needed, as well as finding the right kind of care providers, ah appealing successfully with my insurance company, um and my neurosurgeon in Los Angeles asking me if I would be willing to help his other patients just as a courtesy. i had another business prior to all of this happening that was in its 18th year as an estate administrator. So I was very busy working with that. um But this experience with me opened up a completely new door that I didn't expect. And as time went on and as I, you know, volunteered to help people as a courtesy, it was becoming more and more apparent to me that health care was evolving
00:03:36
Speaker
or more accurately devolving in the case of of patients. And I decided that this was something that I i wanted to do full-time. And this was prior to the passage of the Affordable Care Act in 2010. With the passage of that legislation, as i think anybody who has tried to access health care in any way has discovered, it has become more and more difficult. um And I've come to the conclusion that that health care exists as a business and the the patient is not the priority. they're They are just not. And patients need help in all different ways.
00:04:23
Speaker
whether it's accessing correct providers, understanding what their insurance is, understanding um insurance um changing options, to getting prior authorizations, to negotiating medical billing, um and making sure that they don't get booted out of a healthcare facility too soon.
00:04:48
Speaker
So it's it's pretty, ah you know, ah huge umbrella. There are a lot of advocates in this country that specialize in different areas. And only because I've been doing this for so long have I come to learn that um that there there is It is really dangerous to be a patient setting foot into any healthcare environment without the help of an advocate because things are changing all the time and not in not in the benefit of to the benefit of the patient.
00:05:26
Speaker
Am i recalling correctly that you had something like three root canals as you were dealing with this issue? i've Five. Five.
00:05:37
Speaker
um And let let me tell you that that in and of itself was not pleasant. And because root canals, you know, often are accompanied by some discomfort afterward, that was only adding to the pain that I was experiencing because of a problem that emanated at my brainstem um at the base of my skull, and not in my mouth at all, which was the place where I was experiencing the pain, but it wasn't the source.
00:06:10
Speaker
So in addition to my brainstem pain being an ongoing situation where it was I was experiencing literal electric shocks on the left side of my face, I also had the discomfort of...
00:06:29
Speaker
having five root canals within six-week period, um that where I did receive more than than one opinion, so I thought I was safe.
00:06:41
Speaker
But when you're not feeling well and you're vulnerable and compromised – As I learned the hard way, it's very difficult to make a clear decision and stay focused. Pain will interfere with with that process with the most logical people.
00:07:01
Speaker
And that ended up happening in my case. How did you get from an incorrect diagnosis and then the subsequent treatment to the eventual correct diagnosis?
00:07:14
Speaker
Well, i I did go to my dentist first because what I felt was oral pain. um I thought there was a problem in my mouth. My dentist um referred me to an antedontist, a root canal specialist.
00:07:31
Speaker
who who was in in a very well-established practice. And I have to say this entodontist is an excellent entodontist. But he it was his opinion, and my dentist concurred, that I just had a series of nerves in in teeth on the um upper left side of my mouth where I felt most of the pain, their their collective opinion was that I just had nerves that were, you know, for lack of a better description, going bad. They were dying in that area. I had never had a root canal before. i'd never experienced any kind of oral pain before.
00:08:16
Speaker
have always been, you know, since then um and prior to then, knock on wood, pretty strong and healthy. So I thought that, you know, two opinions, um especially with an antedontist so accomplished,
00:08:33
Speaker
um was was what I needed. But it was after the fifth root canal when I told my entodontist that the pain was not any better, that these electric shocks were continuing, and that my pain was worse.
00:08:49
Speaker
I was presented with the statement, and it wasn't really offhand. It was a a direct statement of, um look, you've had five root canals.
00:09:01
Speaker
There is nothing wrong with your mouth. You might want to consider talking to somebody about your pain because the the inference was, you know, this pain did not have a physical cause.
00:09:17
Speaker
um And it was only at that point, and it's it's in, you know, hindsight is always 20-20, but it was only at that point in retrospect that I i knew that, um you know, I i am not,
00:09:33
Speaker
weak person. I'm not a person who gets sick very often. I knew that these shocks were real. And it was at that point that, um you know, I very nicely said, you know, thank you, but no thank you. And I went to UCLA School of Dentistry, which has an oral facial pain clinic, which is really where I should have gone from the beginning. And what I've learned through my experience And what I use in my practice as as an independent patient advocate is if someone comes to me with any kind of condition that is not typical or straightforward, my recommendation is that they seek care at a teaching and research hospital because the types of resources and the tools
00:10:25
Speaker
sheer number of cases involving different unique situations that teaching and research hospitals see far outpaces what a person either in a local community practice or even a community hospital will will have access to in terms of reference. So when i spoke with a dentist who who at the time ah was a teaching professor at the UCLA School of Dentistry, he spoke with me over the phone and diagnosed me over the phone. He said, this is what I think you have. I think you have a rare nerve disorder called trigeminal neuralgia, but the only way that I can confirm that is if you come to see me. And I am going to have, I mean, these these were the days before
00:11:21
Speaker
doctors had to be employees of health systems or medical practices. And also, um you know, when that they really had much more of a free reign, in my opinion, to help patients. um This doctor, his his name was Robert Merrill.
00:11:41
Speaker
um he He is one of the people who really saved my sanity. not only, you know, to mention my life, because I had no quality of life with these electric shocks that were happening, I would say, like every three to five minutes. I mean, they were chronic and they were debilitating. They were ongoing.
00:12:03
Speaker
But he he told me, he didn't ask me what kind of insurance I had. Network status was not an issue. Again, this was prior to the passage of the Affordable Care Act.
00:12:14
Speaker
And i've I've been able to see the vast differences in how healthcare is practiced. But he told me, he said, I'm going to have our office scheduler call you as soon as we hang up and get you in here to see me as soon as there's an opening. But what I am going to do is i am going to write an order for you, which cannot happen now unless you're an established patient with a doctor. um I'm going to write an order for you for a brain um um MRI because I need to rule out that there's nothing compressing your nerve that is causing this pain. um
00:12:58
Speaker
And all of this happened before i i got in to see the doctor. That just doesn't happen today. it's just, doctors, not because doctors don't want to help patients. It's because most doctors, um you know, with the exception of a concierge physician who does not have hospital privileges, doctors are required to abide by their employment protocol. And that is they they are not allowed to prescribe anything until a patient can come in to see them to be evaluated.
00:13:36
Speaker
Lisa, would you mind just clarifying for me what a patient advocate does? Then what might your experience have been like back then if you had had a patient advocate?
00:13:52
Speaker
And if you were going through the same thing today, what might your experience be? There are many different kinds of patient advocates. And and basically, um i am an independent advocate. um All advocates, the goal is to help the patient navigate an increasingly complex healthcare system.
00:14:17
Speaker
um It requires more skill and more finesse as time goes on. But that that's basically what an advocate does. um Advocates can specialize in different areas. There are some advocates who accompany patients to medical appointments, to hospitalizations, to hospital discharges. There are other advocates who are insurance experts. They can help people navigate denials. They can help them secure pre-authorizations.
00:14:52
Speaker
There are other advocates that negotiate medical billing. um Other advocates that help people with rare conditions identify specialty physicians who can help diagnose them properly.
00:15:07
Speaker
Some advocates are skilled at end of life and that type of planning with directives and making sure that people, um that their wishes are honored.
00:15:22
Speaker
Other advocates help people as they age. um It is only because I've done so much of this work encompassing decades that i work in all of these areas.
00:15:36
Speaker
But because i am independent, ah that means that a patient or the patient's loved ones hire me.
00:15:46
Speaker
And I am accountable only to them. um there There are advocates that work in hospitals. They do help patients. However, the extent that they can help patients is limited because who pays you is ultimately who you must answer to. Insurance companies have advocates. But again, in my opinion, I believe that their help is limited because they they are not allowed to spend endless amounts of money on the insured patient.
00:16:23
Speaker
So I would recommend to your listeners, not only is patient advocacy as a profession not as well understood as I wish it were, but there are other types of advocates. um There's a recent phenomenon within the last year or so that there are advocates that are paid for by Medicare.
00:16:46
Speaker
However, their ability to help a patient is is much more structured and limited for people who need you know basic advocacy help, you know such as scheduling appointments, helping people monitor their medications, etc.
00:17:08
Speaker
A Medicare reimbursed advocate could be able to help, but this requires a prescription from the patient's doctor. And it is the doctor who is responsible for reaching out to the advocate and hiring them and the advocate must perform within the realm of what Medicare has allowed.
00:17:36
Speaker
So I believe that some advocacy is better than no advocacy, but it is important for for the public to understand that if they're looking for an advocate My recommendation is that they be very um aware of the fact that whoever is paying for your services is going to have a direct impact on the type of services that you get.
00:18:05
Speaker
So, Eric, given um my experience um in advocacy and and the crisis, my own health crisis that brought brought me to this point...
00:18:17
Speaker
I've decided that the best match for my personality and my goals as an advocate, as well as not having any limitations on the advocacy support that I can provide my clients, is an independent model. That is an arrangement where a client retains my services for a set fee and there is nothing that interferes in between the
00:18:48
Speaker
the work that I do, and my client. I don't have to answer to a doctor. I don't have to wait for a doctor to be paid by Medicare before I am reimbursed.
00:19:01
Speaker
My services do not have to um fall under the qualifications, the categorization of a certain medical billing code. But again, as I said, I believe that some advocacy is better than none. And I would just encourage the public if they're, well, I think everybody should think about having a patient advocate even before they need one. Because you never know when a health situation could come up unexpectedly, um as it did with me at 46 years old. You know, my husband and I had hiked Mount Whitney in a single day, um not not too long before I woke up with electric shocks in my face.
00:19:50
Speaker
And we were able to make the 21-mile round-trip hike in ah in a single day. Mount Whitney is the the highest peak in the contiguous 48 United States.
00:20:04
Speaker
So I'm not, um you know, being in pain and pushing through is not anything that's foreign to me. But I would say about half of the people that come to me looking for an independent patient advocate, They are in the midst of a sudden, unexpected situation, whether it be a stroke, a heart attack, a car accident, um a fainting spell where they fall and and break limbs. The other half are what I would consider, you know, regular issues with aging, where people tend to become more and more debilitated with age as time goes on. And there are more complications. People find themselves...
00:20:56
Speaker
needing more medications to address different issues. Sometimes that happens without a single person keeping an eye on what all of those medications are doing in conjunction within the same body.
00:21:12
Speaker
Sometimes there are side effects from medications that are unintended that can be intensified with other medications. So I can tell you, in cases where people are getting older and they find themselves, for better or for worse, being prescribed more medications to address more health issues... That can, there can be a significant oversight in that there isn't one person moderate moderating and monitoring all of the effects of those different medications in one body. As people get older, their metabolism slows down. So the ability to clear these medications through the kidneys slows down.
00:22:03
Speaker
Some medications can make people dizzy. That that is another you know problem that can create another set of issues if people become prone to falling.
00:22:16
Speaker
So i I have found my specific little spot in advocacy that I love, that matches my personality, matches my goals.
00:22:28
Speaker
And I'm very grateful for that. um Other advocates help people in other ways. And and that's wonderful as well. And to answer your other question, if I had had an advocate or access to an advocate when I was going through what I was going through, i am convinced um only because people have come to me with trigeminal neuralgia and other cranial nerve disorders. And immediately, I refer them to a teaching and research hospital that specializes in oral facial pain.
00:23:08
Speaker
If I had had the benefit of that advice, I think, I know, i would have been able to save four months of wondering what was going on unnecessary root canals,
00:23:23
Speaker
having the insinuation that my pain was psychological in basis, plus I would have had the support of someone who truly understood what it is like to me be misdiagnosed in a system and misguided on a path of being able to correct a problem. So there there's no question in my mind that I would have benefited. But I don't believe that in 2006, when my electric shocks on the light left side of my face began, I'm not aware that there were patient advocates.
00:24:04
Speaker
If you were going through the same issue today, would your experience be different as a result of changes to health care, such as, for example, the Affordable Care Act?
00:24:17
Speaker
I think very different because an advocate, first of all, would know this is a complex situation. And for the best outcome, we shouldn't be limited to a community healthcare system and medical staff. if we If we go to a teaching and research hospital... The experience level, the vast number of people that go through the doors on a daily basis with different complex conditions is so much greater.
00:24:51
Speaker
And having doctors with the benefit of seeing situations that are not typical, are much more likely to lend themselves to a correct diagnosis as opposed to stating something like, maybe you should talk to somebody.
00:25:10
Speaker
No one ever said that to me at UCLA. When I described my pain, and i I did go through a psychological profile, which every good pain specialist was,
00:25:25
Speaker
will conduct, in my experience, because they do want to know what what is the underlying mindset? what how What makes this person tick from a psychological point of view? Because there are cases where pain can have ah a largely, if not entirely, psychological basis. And that that is that whole area of medicine um is called somatic pain. And I have seen cases where that exists. But for the most part in my experience, it's People that do have debilitating pain, the it is not a somatic experience. It is truly real pain. And when people are dismissed...
00:26:18
Speaker
And when their pain is questioned as to whether it's legitimate or not, that can have a very detrimental effect on the patient feeling pain. And and also, i can tell you from experience that chronic pain can is so debilitating that it can impact a person's brain chemistry. and have side effects such as real depression, clinical depression, which can be very isolating. And in my experience, having a healthcare provider inadvertently add to the stress that a person in chronic pain is already going through is not helpful for their mindset or how their brain chemistry is working.
00:27:07
Speaker
What do some of the engagements look like with some of your clients? Are there cases where you're in the room with the patient and the doctor, for example?
00:27:19
Speaker
I am with a patient to the extent that they want. And that does sometimes look like accompanying them to a medical appointment.
00:27:30
Speaker
It can look like accompanying them in the hospital um when they're admitted and or when they're discharged. Sometimes it is a 24-7 accompaniment where I don't leave. Because there are they are so vulnerable. they ah I believe that it is dangerous for a patient to be in a hospital by themselves. And this applies to every hospital, including a teaching and research hospital.
00:28:01
Speaker
And I believe the reason for the danger is not because healthcare providers are any less qualified than they have been. I think in many cases, because of the advancements in medicine, they're actually better qualified. But because they are employees of the healthcare system where they work They are required to see a certain number of patients a day. They don't have the discretion.
00:28:32
Speaker
um I can tell you in my hometown, and this is just incredible to me, the local hospital recently began having their doctors wear trackers.
00:28:45
Speaker
on themselves, where the hospital administration is able to see how much time the doctor is spending in a room with a patient and which patient that is.
00:28:59
Speaker
That has caused an uproar, and a lot of doctors left that health system, which I can appreciate. But medical errors and sometimes not being as thorough Speaking with a patient and conducting an assessment can be cut short and important things can be missed. And an advocate can help in that realm. And that's why certain people have asked me to provide this patient accompaniment in a hospital.
00:29:30
Speaker
I have to admit that as I've gotten older, my stamina isn't what it used to be, and I'm not able to perform that service as much as I used to. But I will be with a patient in person as much or as little as they want.
00:29:48
Speaker
When it comes to a patient and their, what I call their, you know, their life care planning documents, a lot of people consider them estate planning documents, but I'm much more concerned about my client than I am their estate. But typically, estate planning will cover an advanced healthcare directive. It will cover a durable power of attorney for medical and legal matters,
00:30:17
Speaker
um I always make sure that before I take on a patient who needs in-person accompaniment, they already have to have a healthcare directive that is executed because I don't ever want to be practicing in isolation with a vulnerable patient.
00:30:39
Speaker
I really prefer that they have a friend or family member who knows me, who can participate in meetings. So we're not operating in a bubble.
00:30:52
Speaker
It's very easy for a vulnerable person to throw their complete trust onto you. And I think for my client's protection, as well as my own protection, practicing as an advocate, I like someone else close to the patient to be aware of what's happening. um Sometimes people can become too dependent on you.
00:31:18
Speaker
I specifically will not accept a power of attorney appointment because, number one, I think that there is a conflict of interest there. If I'm being paid to be an advocate,
00:31:33
Speaker
um I don't want to be responsible for making financial decisions for a client. I think that that that is a conflict of interest that that I don't think is in my client's best interest.
00:31:47
Speaker
When it comes to accepting appointment as ah prime the primary agent for a healthcare directive, I know that that is allowed ethically in my profession, but the way that I prefer to practice, because I am a certified hospice and palliative care counselor, and I am very well aware of what can happen, what does happen with people at end of life,
00:32:14
Speaker
To me, i prefer that if a client says, I really want you more involved in my end-of-life planning or even planning that doesn't involve end-of-life, So this, again, just the way that my practice is tailored around my personality and the way that I feel I can best serve one of my clients, all of my clients, what I have recommended to them is I'm very happy to help you. But what i prefer that you do engage.
00:32:51
Speaker
have a close friend or family member who has known you for a long time and knows what your preference is. Keep them as your primary agent, but feel free to state in your directive that you are requiring your agent to consult with me as your advocate before making any decisions. That way I can have the input from Providing insight on what is happening to the patient physically and emotionally and spiritually, if that is part of the equation. um and And I can weigh in in a way where the healthcare agent is much more fully informed.
00:33:39
Speaker
before they make a decision if they're if their loved one is unable or unwilling to make that decision on their own, or if the loved one simply wants the assistance of of their agent. That works very well for me. I feel very comfortable with that. But again, the public should be aware that different advocates practice differently. And I believe it's so important that an an advocate who is best matched to that patient be identified long before healthcare crisis presents itself.
00:34:20
Speaker
It's, you know, people people in this country, you know, and possibly even in the world, they engage in estate planning without a second thought.
00:34:32
Speaker
You know, it's just a knee-jerk reaction. You know, yes, I get my affairs in order. But we've not gotten to the point yet in this country, and I think it's because advocacy is still relatively new and not well understood, that people don't automatically say, i need to not only get my affairs in order, but I need to have my healthcare advocate lined up.
00:34:56
Speaker
And I hope that as time goes on, that that does become more and more commonplace because it it can truly help people in a much more meaningful way than estate planning can.
00:35:10
Speaker
so It seems to me like most people are only going to engage a patient advocate, independent or otherwise, once they already have an open or ongoing medical issue.
00:35:32
Speaker
but There are many things like financial planning, planning for retirement, healthcare directives, and so on, where you don't really know when you are going to run into an issue.
00:35:49
Speaker
so The best time to plan is now in a sense, unless of course there's opportunity cost because of putting off other things.
00:36:01
Speaker
So ah guess what I'm really wondering is What do you recommend or how do you recommend that people think about patient advocacy and being prepared to have a patient advocate or or planning around it?
00:36:23
Speaker
So what I encourage people to do is to think about healthcare advocacy along the exact same lines that they think of estate planning.
00:36:35
Speaker
When people think about estate planning, estate planning is really not necessarily for the benefit of that primary person who is the trustee of their estate plan.
00:36:50
Speaker
Estate planning exists primarily for the benefit of being able to Concentrate wealth among families. And even if there's not a tremendous amount of wealth, pass down assets at a favorable tax advantage. there i don't want to get too complicated, but there there are differences if your beneficiaries inherit assets.
00:37:18
Speaker
your assets through a trust or through you individually. There is a tremendous tax difference. And that is, in my opinion, the primary benefit that estate planning provides.
00:37:32
Speaker
I think that if people gave equal, if not more consideration to their quality of life and how they want to age and what that looks like for them. Maybe a health emergency might not ever come up, which would be wonderful. But I would say oftentimes, more often than not, health emergencies do.
00:37:58
Speaker
You are allowed in healthcare planning to be as specific or as general as you want. And whether I'm coming into a case where client has already suffered some kind of catastrophic health issue, or if they have no planning at all, what I want to identify to the best of my ability, because this will tell a lot about how their care unfolds and how the rest of their life unfolds,
00:38:28
Speaker
Have they defined quality of life for themselves, whether it's verbally, you know, or in writing? That's very important because what might be acceptable to one person would be completely unacceptable to another person.
00:38:44
Speaker
I don't want... I can't guess... Some people, and it's their decision, it wouldn't be my decision, but some people do think that it is acceptable to live um with being assisted in their breathing with a ventilator, you know, and or being fed with a feeding tube long term.
00:39:08
Speaker
Advocates cannot make a value judgment, but to the extent that advocates are aware of what a patient does or does not want, they can help a patient have a voice with their healthcare providers.
00:39:24
Speaker
Another thing that I can do is because insurance Even, you know, the so-called better insurances such as PPOs or original Medicare A and B. I have seen over the years how coverage from these policies is becoming more and more limited. They are no longer, you know, the free check for every kind of health care that you could possibly want from any health care system at all.
00:39:54
Speaker
If I am able to understand what type of insurance a person has, i can explain to them, you know, and or their loved ones exactly what kind of care they can expect to receive it's It's a very well-known but unspoken fact among advocates that the plan of care that a person is going to get is in great part determined by the type of insurance that they have and what type of reimbursement rate that insurance company is going to pay their healthcare provider. It it is strictly a money issue.
00:40:38
Speaker
it It does not align with the Hippocratic Oath. But when a doctor works for healthcare system, whether it's a medical practice or a hospital, I have seen many times that the type of insurance that a person has is going to have an impact on the type of care they receive.
00:40:59
Speaker
As an advocate, I am able to intervene and have a conversation with the care team to acknowledge this fact and not blame them, but voice to them my understanding of the pressure that they are under as an employee of that health system.
00:41:22
Speaker
And encourage them that because their patient, my client's goals for treatment and quality of life as they age, regardless of whether they're 40 or whether they're 80,
00:41:37
Speaker
That is invaluable to people. And I just don't think that people understand. um One reason is because insurance is very boring.
00:41:48
Speaker
it is extremely boring. If I didn't do this for a living, I would not understand that the typical summary of benefits that you get every year um or you know, the Medicare handbook for insurance you know, the upcoming year.
00:42:06
Speaker
um that That did not used to be. ah Before I became a patient advocate and i my business as an administrator um required that as a sole proprietor, I have my own health insurance. Every year without fail, I received a hard copy in the mail from my insurance company of the policy document. And it was always over 100 pages.
00:42:35
Speaker
it is the legal contract that defines what your coverage is Ever since the Affordable Care Act passed, what people get now is called a summary of benefits, which is six to eight pages. it is not the legal contract that defines your coverage. But unfortunately, that is the guide that most people use in choosing their insurance.
00:43:02
Speaker
for the next year. and I believe that that that is a tremendous oversight. And it's only because of my background as an estate administrator that I have the ability to read certain legal documents like a healthcare insurance policy and understand exactly what type of coverage my client has and what they don't have. And that's an invaluable service.
00:43:32
Speaker
that an advocate who is skilled at understanding that specific aspect of advocacy can provide. Lisa, if you walk into a situation cold, how is it that you decide or identify what the real problem is The way that we typically work, unless it's an emergency situation where we're called to a hospital or a skilled nursing facility, um and it's usually in a case like that, it's usually by a family member or a close friend or another loved one.
00:44:08
Speaker
we We offer what is called initial assessments and evaluations. Those typically last a few hours. those I like to conduct those in person, although I realize that there are some advocates that offer that service remotely.
00:44:29
Speaker
i like in-person assessments and evaluations, even if I have to get on a plane. and And fly to a client. Because meeting in person, I believe, allows you to develop a more personal rapport.
00:44:45
Speaker
It allows you to better observe the environment that a person lives in. I encourage a family member or a loved one to be present. And what these initial intakes do is talk about what what is happening with that patient, with that client.
00:45:06
Speaker
Why is it that you or your loved one who is with us has asked for this evaluation? What questions can I answer for you about what an advocate does?
00:45:17
Speaker
How I might be able to help you immediately? How I might be able to help you somewhere down the road? Or both. So it it's a very structured conversation that I try to make as personal as possible.
00:45:32
Speaker
One of the questions that I ask, in addition to, you know, what what type of insurance do you have? What are your wishes for your quality of life as you age?
00:45:43
Speaker
I want to know, are are you seeing a doctor right now? Do you have a regular primary care physician? Do you have any specialists? um If you do, what are those issues that you're being seen for? Do you feel like you're experiencing any issues that are not being addressed? Yeah.
00:46:03
Speaker
And in a case like that, my evaluations always end with, I submit a written report within two to three business days after the meeting to the the principal person and their loved one with my um observations, impressions, and recommendations.
00:46:26
Speaker
And if i if I identify someone, you know, who is dozing off, or who is saying, you know, excuse me, I need to ah break for a moment to use the restroom, if I see they're unsteady, or if I see their train of thought is not tracking, in my recommendation, my written recommendation, I will advise them, you know, speak with your primary care physician about this issue, because this is something that I noticed.
00:46:59
Speaker
I don't have any control over whether they accept my recommendations or not. But that's how advocates are trained ah to identify issues that the the client is already aware of. Sometimes it is the loved one who's called the meeting because they can see certain things that the client is doesn't want to see.
00:47:25
Speaker
And this can happen in cases of aging, you know, ranging from um dexterity to isolation to possible cognitive issues.
00:47:38
Speaker
you know it's It's very difficult to age in our society because there is such an unrealistic expectation um and and ideally i did ideally idealization of youth and staying young and looking young. And it's just not realistic. There's nothing wrong with taking care of yourself and, you know,
00:48:07
Speaker
looking the best that you can and being able to function the best that you can physically and cognitively. But i this is the a very, you know, dark secret in the Western world.
00:48:24
Speaker
especially in America. I just don't think that we are kind to ourselves and other people about being realistic about aging and how we can actually help our aging process in ways that don't involve, ah you know, plastic surgery, but focus more on physical health and core strength and getting quality sleep, keeping your mind sharp, and staying engaged.
00:48:57
Speaker
Because warding off isolation, which can often lead to depression, is a huge problem in this society. But people are much more likely, you know, to talk about, um you know, different kinds of... of you know, invasive medical procedures that are going to make them look a different way, that doesn't impact your core strength or you know, how well your brain is functioning or whether you feel like you have a purpose, whether you're still working or whether you retire. These I've i've learned from observing my geriatric clients who have aged incredibly well and who have lived,
00:49:46
Speaker
remaining connected and with purpose um and been able to avoid falling. This has been a tremendous lesson for me as I age that I'm incorporating in in my own life. And now that I'm 66, I mean, I'm not young anymore. I'm certainly not old, but I'm definitely well within middle age where if I don't have a plan where I'm hitting all of these things, I i know in the long run that could very likely prove to be a problem. And I want to stall that. I want to preempt that as much as I can.
00:50:27
Speaker
Since the passing of the ACA, what has changed in the health care landscape? Changes started long before the passage of the Affordable Care Act, you know, moving into value-based models of care, um the introduction of Medicare Advantage as an alternative type of coverage for seniors, um That is less expensive, but in my experience and opinion, offer far less value than original Medicare Parts a and B. you know, private equity has become involved in healthcare in a very big way. They own um interests in healthcare systems, in physician practices,
00:51:22
Speaker
they're there And and politics politics is another whole issue. i don't Politicians have tried to make this a party issue about who is the party for healthcare and who isn't, which I know is false.
00:51:42
Speaker
And the reason that I know that is because I did live and work on Capitol Hill for three years when I first um graduated from college. And I was able to see on Capitol Hill what influence the lobbyists have on politicians.
00:52:02
Speaker
And it's it's just a fact, but but no politician speaking about healthcare is going to talk about the healthcare lobby. They're just not. it Again, it is up to us as individuals. And I'm only a few steps ahead of this because this is my profession. And if I didn't know this, I wouldn't be doing my clients the greatest service that I could.
00:52:26
Speaker
But I do understand how the healthcare lobby is funded, how it works, and how it's organized. And they are extremely powerful.
00:52:38
Speaker
You know, one one thing I will say, i'm I'm not going to make a value judgment, but AARP is an organization that many seniors trust.
00:52:50
Speaker
And believe would just like to ask AARP why they have continued to engage in a multi-year-long, multi-million dollar partnership with UnitedHealthcare.
00:53:08
Speaker
over the years. um I had always thought that AARP was an individual, independent organization that existed for the benefit of seniors. But through AARP, UnitedHealthcare does offer um Medicare Advantage coverage, which is very different from traditional Medicare. And I would leave it up to your audience to to find out what that means, because I don't think that it's up to me to make value judgments for people.
00:53:46
Speaker
I just know that when you have... um Insurance companies like UnitedHealthcare, and believe me, they're they're not the only one, although I know that they have been singled out ah recently in the news, um but healthcare companies exist for the benefit of their shareholders today, pure and simple. Absolutely.
00:54:11
Speaker
And insurance companies have their own healthcare lobby. The American Hospital Association has their own healthcare lobby. Whether hospitals are profit or non-profit, all that really means is either they do or do not pay tax on their profits. And I think that people need to understand that Not only when the Affordable Care Act was up for um negotiation before the final vote occurred, there was lot of influence from the health care lobby that, in my opinion, watered down the impact of what the Affordable Care Act um allowed people. There are definitely advantages in the Affordable Care Act. People with pre-existing conditions can no longer be denied insurance. That is a huge plus.
00:55:10
Speaker
But one huge omission that I would like um every politician to answer for every constituent is why was there no limitation on the medical price list, which is called the charge master?
00:55:28
Speaker
Healthcare costs are escalating. astronomically. um it's and And it has made healthcare unaffordable for a lot of people who do have coverage. So I think that understanding um don't accept from your local politician the standard stump speech line that they are going to protect Medicare and Social Security. The issues are much more complicated than that. But unfortunately, that's how politicians run.
00:56:08
Speaker
And those sound bites is what we're used to hearing. it's it's The political impact on healthcare is much more complicated than than we are led to believe. The way that hospitals operate, um you know, the C-suite and whoever else happens to run a hospital, they are making much more money than doctors. And I include specialty doctors.
00:56:42
Speaker
That to me like is is a huge red flag. when When a doctor who has gone to medical school and almost always has taken out a loan to get through medical school and has fought through many years of training, residency, internships, sleep deprivation, only to be told that they're only going to be able to continue practicing at that hospital if they become a hospitalist, an employee, and this is their salary. they are not going to be able to establish a private practice. This is something that doctors speak to me off the record all the time, especially if I stay in a hospital and they see that I'm sleeping there and I'm not leaving. When they come in at 6.20 in the morning and no one's there, on they are very happy to inquire as to why it is I'm there. And
00:57:47
Speaker
Tell me what it is that they're experiencing and what they're feeling. You know that the burnout rate and the the depression and suicide rates for doctors continues to increase.
00:58:01
Speaker
i mean, did this this is a crisis in our country that is has gone unmet. Doctors can only do a limited amount on behalf of the patient when it comes to navigating the administration and insurance. no No advocate can come close, nor would we ever try to diagnose and treat a patient. But the fact of the matter is that there
00:58:32
Speaker
there are limitations that take a toll on patients and healthcare staff that independent advocates are well aware of that they can counter in a very professional, helpful way. um I can't tell you how many doctors have not been trained in how to deal with insurance companies.
00:58:56
Speaker
And how many case managers are not aware of certain Medicare rights that Medicare patients are entitled to? They just don't know.
00:59:08
Speaker
And i I happen to believe that that omission in training is deliberately. And I do believe that that limits a patient's rights. I don't think ethically it's fair, but the presence of an independent advocate you know is is not to work against a doctor or a nurse.
00:59:31
Speaker
um We really understand the benefits and the pitfalls of the system and how the healthcare staff are hampered by that. Sometimes by things they're aware of, sometimes by things that they're not aware of.
00:59:49
Speaker
And that's where we can we can really benefit a patient. um Not only the patient, but their care team. Coming into this calendar year, there was a lot of talk about the changes to the Affordable Care Act or rates going up or something of that nature.
01:00:12
Speaker
What are the current state of things as you see them? The specific issue that I'm pretty sure you're referring to is that um as of January 1st of this year, the government subsidies that were available to a large percentage of people with um Affordable Care Act marketplace policies, those subsidies which helped offset the monthly premiums, those were not renewed by Congress.
01:00:44
Speaker
um And as of this date, I mean, today is the first day of spring, the 20th of March. Those subsidies still not have been renewed. You know, the the latest, um you know, budget crisis that we're we're faced with right now is the Department of Homeland Security,
01:01:08
Speaker
Part of their budget has not been restored, and it's taking a toll on TSA workers and the terrible lines at many of the airports, especially larger airports of of passengers trying to get cleared through security to take their flights. did This, in my opinion, is strictly a political problem that is deliberate.
01:01:35
Speaker
It is gamesmanship at the expense of people. I do not believe that our government is working in the best interests of the public right now. And I'm not going to single out anyone because I think there's plenty of blame to go around.
01:01:55
Speaker
Having worked on Capitol Hill and seeing firsthand how politics works, that's provided me with an insight that most people don't have. But I see it for what it is, and there is no excuse.
01:02:09
Speaker
There is no excuse for it. The government is not working for people. I know many people with Affordable Care Act plans who relied on those subsidies, who are no way no longer able...
01:02:24
Speaker
to afford their policies, or they are no longer seeking care because they're doing everything they can to keep their policies in place, but because their deductibles are so high.
01:02:37
Speaker
Insurance to debug deductibles were never as high as they've been since the passage of the Affordable Care Act. That is the problem. along with ongoing escalating medical costs, because the priceless, the charge master, has no constraints on it at all. So really, the the practical question is, what good is health insurance if your deductible for yourself individually is $15,000 or as a family,
01:03:14
Speaker
and your're out of pocket that amount plus your monthly premium that you're having a hard time affording before you even step into a doctor's office.
01:03:25
Speaker
So more healthcare issues are being put off in terms of diagnosis and treatment. It it really is a crisis in in a country that has such excellent healthcare.
01:03:41
Speaker
Access is the problem now. Access and affordability. And I just don't believe that it it is a priority among our government are government officials.
01:03:51
Speaker
Lisa, if someone wants to learn more, follow, connect, or reach out to you, where should they go? Well, then are you I became a formal educator last year in this space because I feel like so much basic information is lacking in healthcare. And I designed a series of online, what I call educational capsules,
01:04:22
Speaker
And they can find that at soulshirpasolutions.com. all one word dot com And um SOUL is S-O-U-L.
01:04:35
Speaker
That comes from my my background in palliative care and hospice work. SOULSherpaSolutions.com, that will describe the the capsules, you know, ranging from how we got here to what you need to be aware of. If you go to the emergency room,
01:04:56
Speaker
to how healthcare really works today. And my business web website is soulsherpa.com. I also encourage people, you know, to look into patient advocacy in general. And if they Google national patient advocacy groups,
01:05:18
Speaker
they will find, you know, at least five of them that have free national directories. They talk about what advocacy is and what it isn't, what different types of advocates exist, and and how to vet a patient advocate who might be able to help you or your loved one in whatever situation is facing you.
01:05:45
Speaker
Lisa, I appreciate you being here, and thank you for joining me. I appreciate the invitation, and thanks for being such a great host, Eric. You're very kind, and thank you.