Summary
Dr. Ben Thompson, head of palliative care at Prism Health, shares insights on the field of palliative care. Palliative care is specialized medical care for patients with serious or life-limiting illnesses. It is different from hospice care, as it can be provided at any time during the illness and is compatible with life-prolonging treatments. Dr. Thompson emphasizes the importance of tailoring treatments to the patient's goals and values, and the role of palliative care in addressing the physical, emotional, and spiritual needs of patients. He also discusses the challenges faced by families in providing care at home and the need for better support and resources.
Takeaways
- Palliative care is specialized medical care for patients with serious or life-limiting illnesses, and it can be provided at any time during the illness.
- Tailoring treatments to the patient's goals and values is important in palliative care.
- Families play a crucial role in providing care for patients with serious illnesses, and supporting them is essential.
- There are challenges in providing care at home, and more support and resources are needed.
- Equitable access to care for all patients is an ideal goal that requires meeting patients where they are and providing goal-concordant care.
Transcript
neal_shah__careyaya (00:01)
hey everyone thanks for listening we are here with dr ben thompson head of palliative care at prism health the hospital system in south carolina
dr ben is also a graduate unc chapel hill school of medicine and has been practicing in palliative care for his entire career here to share insights with our listeners so i guess yeah maybe just to kick it off ben if
give listeners an over view over yourself how did you end up in the medical field and pursuing palliative care
ben_thompson (00:35)
thank you neal for having me i'm grateful just to sit down and chat with you about the career and about whatever else you want to know about so i'm ben thompson
i got into medicine when i was a kid i had some some medical procedures done and from that point on i knew i always wanted to be a doctor and i knew that the most important thing was helping people you know medicine there are surgeries there are procedures there's medications there's lots of different ways to help people but throughout my career i was drawn towards the people who i think require them
s help the people who are the sickest and not only struggle struggling with a physical illness but dealing with complicated family dynamics emotional burden of their chronic serious illness with spiritual questions around their illness and just being able to approach all those things from a medical perspective is very important to me and that led me to palliative care so i started
medical school at chapel hill in twenty twelve and when i finished i decided to go into family medicine through the residency match service i matched at the university of south carolina which is now prison of health at that point i knew i wanted to do palliative care so i stayed here for our fellowship and afterwards wanted to work in both the practice of palliative care but also the education
of paliative care medical education has always been really important to me not only helping families but helping those who will eventually be helping families themselves so this opportunity allowed me to work in program leadership for the palliative care fellowship program and i'm actually i'm not the medical director of palative care but i am the medical director of the fellowship so i'm in charge of picking
three folks to train with me every year after they finish their residency part of that experience is also bringing resident doctors from family medicine internal medicine psychiatry neurology fellows from critical care to spend time with me as whell and see what we do in addition to all that post graduate work to undergraduate medical education where i worked closely with the second year medical students as part of their ethics
curriculum as well as i have a preceptorship i actually just let two medical students go that i spent the morning with me today just to get to see what we do so i think i'm sorry i'm talking so much i wear a ton of hats and it's it's a very exciting career that i've made for myself where not only do i get to provide direct patient care but i get to influence the direction of
the philosophy of the palativecarten in south carolina
neal_shah__careyaya (03:59)
that's that's great you know congratioulations on the career you know and i guess to add to your comments about kind of education i guess maybe if you could educate our listeners many of whom might not be medical professionals or just kind of like lay people what is palliative care you know i know that sometimes people have some understanding or even potential misconceptions of hospice palliative care et cetera and i think this would be a great form for you to kind of help educate our listeners on what is the field of palliative care
you know what do you guys do maybe even if you could give examples of your day to day life and the types of people you help when people should seek palliative care how that differentiates from hospice care just kind of yeh feel free to give us a layin landa for your field
ben_thompson (04:42)
absolutely paliative care is specialized medical care for any patient with a serious or life limiting illness okay it's different from hospice which is an exclusive typically and exclusive comfort focused approach knowing that a patient has months to live and if their goal is to be at home palliative care is appropriated at any time when somebody has a serious illness
and in fact their studies showing that paliative care at the time of diagnosis of a serious illness like a medathetic lung cancer can improve survival so patients with early palative care ventions can live longer they can get less aggressive care at the end of life including fewer i days or fewer life support machines within the month prior to their death in it
neal_shah__careyaya (05:29)
wow
ben_thompson (05:42)
it's compatible with life prolonging care as well so even if i meet someone who says hey then you know my on college ist told me to come over because i was diagnosed with lung cancer that had spread they said that they can't cure it but they can treat it they can make me live longer with treatment what i get to do you know my my joy in that case is to find out what's important to that patient you know i had a patient
in the last couple of years tell me that what's most important to me is that i'm able to walk my dog i love walking my dog i take them for a mile walk every day and twice a day and if i couldn't do that i wouldn't want to live anymore
so what happens is you get treatment and sometimes the mo therapy can make you feel so sick that you're unable to walk your dog and it's not for me to say oh what you said that walking your dog is the most important thing you can so let's call hospice it's re evaluating now we're in a really different place now you're telling me that you know you get kimo once a month and then for two weeks afterwards you can't walk your dog is that still most important to you is being able to sit
on the couch with your dog and watch football is that okay so it's really tailoring the treatments to the patient our medical system
is so subspecialized that sometimes we lose the patient in the collection of organs um my joy is bringing the humanity back reminding the medical teams that i work with who the patient is inside of you know the cancer that it spread inside of the heart failure inside of the lungs that aren't working well inside of the failing kidneys like there's someone in there who's had a life who has experiences which leads to the other large part of my job which is
ring the family through that right you kids
neal_shah__careyaya (07:45)
wow that's i think yeah thanks actually for sharing that and that's really interesting and informative to many listeners who may not be familiar with the field you know about like what kind of roles you play and sorry to man interrupt actually on the family side would love to learn about that too you know is that do you view that as part of the role is not just the kind of patient support but the family support and now how do you kind of handle that in view that is part of your job is palliative care doctor
ben_thompson (08:09)
sure yeah i mean outside of you know the very small population of hermits who may live in the middle of the forest by themselves caring for a patient is not just caring for the one person that's experiencing the illness it's all of all of the folks that your patient is letting into their lives whether it's family whether it's a significant other maybe they don't have those but they have a very loyal friend that comes to all their dock
s visits um and especially for me dealing with with folks who may have a life limiting illness the family are the people who remain afterwards so while the patient may be the one who's experiencing pain and symptoms and may eventually die from their illness making sure that the family is as prepared as possible to take care of them and now for the end of their life
um you know i think you work as an entire unit right patients concern may be well i don't want to be a burden on my family or it may be in fact i don't want my family to see me like this or i don't i don't want to be at home or i want to be at home and my job isn't just to say okay but it's to say well tell me more about that if you
is being at home important if it meant that your family was having to provide care for you would you rather be if you don't have family would you rather be in a long term care of facility for the end of your life so navigating that with a family as well in fact in the next couple days i have meetings with very large families who are all doing their best to take care of one person and the goal of those meetings is just to get everybody on the same page about what's going on and what we can do to help
neal_shah__careyaya (10:12)
great that's great to hear and i think you know kind of tailing off that and thinking through kind of the way care is managed i think a lot of the stuff that you're doing in your practice is kind of the family and the patients interacting interaction with a medical care system what are things that you observe with kind of the other side of care giving you know which is kind of the home care family care m private outside care what are some
the challenges you see your patients and their families dealing with in taking care of a loved one with serious illness potential terminal illness et cetera and you know where do you see kind of systemic problems or issues they now that need to be addressed
ben_thompson (10:55)
yeah most of my job occurs in the hospital right so i have an out patient clinic as well so i can see some patients
who are wearing pants as opposed to folks who are wearing hospital gowns but a big question that comes up most often is where do we go from here you know we've stabilized our chronic illness and do we go home for that do we go to a nursing home or assisted living or long term care of facility and the question that always comes up is well who is going to help you out at home you know who is going to be the one
providing care for you at home
for for us what's what's most important for me as a doctor what's most important is whatever the plan is that it's safe for the patient and that it's oriented with what the patient's goals are with what the patient wants um if if the thing is i want to go home and i know i may have months to live but i want that time at home on my couch with my dog then i want to do whatever i can to make that happen for the patient
so one one service that we use often and i didn't really distinguish it earlier is hospice hospice is a service for folks who are pursuing aggressive care for a terminal illness and have a life expectancy of six months or less it's a phenomenal program it's government sponsored and most commercial insurances also cover cover hospice care but
ospice itself is typically not enough to keep patients at home safely they need either family support or they need to hire external care givers something that i find often is that doctors haven't explained what hospice offers and what they don't offer so one of the one of the things that happens quite often is families will return home with hospital
with a plan to keep their loved one there for comfort care and there's surprise that there's not a nurse at bedside twenty four hours to day like i mentioned this is a you know it's it's a it's an insurance sponsor service and you may get a nurse for a couple of hours a week you may have an aid for a couple hours a week but the majority of personal care overnight care is the responsibility of family
neal_shah__careyaya (13:13)
like
ben_thompson (13:39)
let's go
neal_shah__careyaya (13:41)
yeah you're right we see that and that's an that's definitely you know and and kind of piggy back off that what do you find you know our families having a hard time you know finding such care on their own how r family's managing to pay for a care and i guess you know even from a consequence perspective if they can't get the care you know are there either consequences for the family having to do it or consequences for the patient not having someone
you just kind of what are the things you see
ben_thompson (14:12)
right so if if you're not able to provide the type of care that that's necessary to keep someone at home on their own there are several options the first option is wave a magic wand and pay for around the clock care or pay for care that fills the gap wouldn't that be wonderful if if all the patients could afford that now even for for a patient who's on hospice and has six months to live you know six months at
thirty dollars an hour adds up very quickly
in fact there was an article published recently that i can send to you about the experience of one of the nurse practitioners on a palliative care team who kept their love one at home because that was concordant with their goals it lines up with what the patient wanted but it ended up costing the family over a hundred thousand dollars to do that so if you have the money to do that and that lines up with your goals or the patient has money saved up and that's important to them and that's phenomenal but if you're not abe
neal_shah__careyaya (15:07)
wow
ben_thompson (15:17)
to provide safe care at home then the alternative is returning to the hospital or potentially going straight to a nursing home typically it's hard to get into a nursing home from the community right from not being in the hospital so most often what happens is family's care givers will bring the patient back to the emergency room and say i really wanted to stay at home he wanted him
he wanted to stay at home that was what was most important to you know my loved one unfortunate ly we can't do it we don't have the resources and so they need to go back to the hospital until we can find them a safe discharge plan which is likely a long term care of facility
neal_shah__careyaya (16:07)
wow and i guess in the families you see um you know remember some of the things that you've met kind of mentioned offline have been um you know health outcomes and i think that one of the things that you mentioned previously was this dual eligible study you know where people are eligible for both medicare and medicated and are able to get kind of supplemental character of support you know resulting in much better outcomes i think ye could you kind of like speak about that some more and just like populations where you see
the outcomes are much better for the family and the patient and why you think that is and how that might be used to inform building a solution for everyone
ben_thompson (16:46)
of course i'm sorry am scrolling and have i have a couple articles pulled up that i wanted to that i wanted to mention but the first one the one that you're mentioning looked at patients with both medicare and medicade and how their discharged from the hospital affected their rates of going back to the hospital for any reason whether it's i have a new infection whether it's i have and these are people who were discharged on hospit
whether it's a new infection whether it's symptoms that can't be controlled whether we can't provide care giver support we know that medic care will pay for hospice medical aid will pay for additional care giver support and they saw that the patients who had that second source of insurance that would provide for more care giving received more intensive end of life care at their home many more hands on more eyes on and those
atients went back to the hospital significantly less often than patients who didn't have that extra support so so we know that that having more care at home improves outcome assuming that the goal of the patient is is to die at home is very specifically in the hospice population um and there's another study that i found that was mentioned on gerypalwhich is anothe
phenomenal podcast about the geriatrics powrtive care space looked at care giver attributes and their risk of hospiathe risk to the patient of hospitalization based on those care giver attributes one of the things that they saw most often is that that care givers who had been working as care givers for more than four years were able to keep patients at home much more successfully
then folks who have been care givers for fewer than four years
so when i think about my patients who may have a terminal illness someone who's diagnosed with heart failure and may have two years to live i know that the person you know their spouse significant out their whoever is at home with them they haven't been in that chargoverrole that long and they have a higher chance of returning to the hospital also for those providing care more than forty hours a week forty plus hours a week there's a much higher chance
hospital re admission of those providing care for twenty hours a week so the intensity the frequency and the duration of care giving all lead to hospital readmission meaning some one at home they've said they want to be at home but based on these care giver factors they may have to come back to the hospital
neal_shah__careyaya (19:48)
and i guess you know further to that point or kind of along those lines like what do you think can be done you know to remedy the situation you know a system level you know it seems like some of these are topics of you know health disparity and really health equity you know so what do you think needs to be done
ben_thompson (20:09)
sure that the people who are best able to pay for care at home are the people that have the financial situation to pay for care at home among folks who aren't able to now i would argue that the hospital has a financial incentive to help patients remain at home and that's based on some hospital metrics that get measured
but i think i think
i don't know that's a hard question it you know from from a system level there's so many moving parts that the coming coming up with a succinct answer for how do we how do we fix home health and home care is it sounds like an impossible task what i know is that about eighty percent of skilled nursing care occurs at home
neal_shah__careyaya (20:50)
yeah
ben_thompson (21:06)
i know that you know families are struggling with this and i know that that the idea of providing i keep using the phrase goal concordant but meaning if someone says they want to be at home early in their disease course that the family doing everything they can to keep them at home can be a real struggle
neal_shah__careyaya (21:06)
wow
ben_thompson (21:33)
and you know there's tons of papers that compare outcomes of people of color versus concasion folks and the care that they receive at the end of life the communication with with the health system
but i think the longer runaway patients and their families have to come up with a plan i think the better chance they have of executing that plan successfully um our hospital has piloted a very innovative study on hospital at home so for patients who are requiring more care than you could usually get at home
neal_shah__careyaya (22:08)
yeah
ben_thompson (22:22)
but maybe it's enbotics for you know twice a day they can have a nurse come in and provide enbotics twice a day through an ivy for six weeks and that keeps the patient at home it keeps them in a familiar environment and reduces their chance of getting delirium which is confusion that occurs in the hospital when you're taking someone out of their familiar environment and it does save money it saves the entire system money
it saves the the patient the six weeks of hospital bills it saves the hospital from having someone staying in a hospital room for six weeks so i think that if there was a way to do that with the care giving side as well that would be a huge benefit to to the entire system the triad right the patient the care giver and the medical community
neal_shah__careyaya (23:20)
yeah wow thanks for elaborating on that and i think that's that's really helpful for the listeners to understand and really interesting even how the hospital at home you know programs that you guys are piloting are working out you know that's things that we observe and see know in terms of like care gaps and ways to advance health equity now i think are in line with those you know access to affordable care at home and then hopefully over time system wide potential subsidization of that care you know to improve outcomes and also just get the solution more
families you know that needed you know i guess to kind of shift out of the theoretical system perspective to even more of a personal perspective you know i guess you would love to hear a personal story you know is there a direct story challenges that has impacted you recently or you know throughout last several years and you know how that's led you to kind of see where there are gaps in the system and you start thinking about potential
ben_thompson (24:19)
well i know we spoke about it last week as well and i think it's fair to talk about my grandmother who has relatively advanced to mena just had a fall and broke her hip she and i just went to visit her and her days and nights are mixed up her days and nights are mixed up she's in a rehab likely moving to a nursing home and unfortunately there's not a
neal_shah__careyaya (24:20)
first solutions
ben_thompson (24:49)
nough staff there to have someone sitting with her twenty four hours a day or to continually re orient her to try to get her days and nights back on track so she's sort of stuck in this limbo of um of sleeping during the day being up and being agitated at night and there's not a way to break out of it unless i was going to hire a care giver for a couple of days you know twenty four hours a day for a week
and see if gradually we can come up with a care plan along with a nursing home to get her back on track from a day's and night's perspective so it's frustrating right it's frustrating because i'm in south carolina you know my family in ohio has done a phenomenal job taking care of them but they're not medical they have their own lives and you know it's hard to expect anyone to spend that much time at a at the nursing home
neal_shah__careyaya (25:53)
yeah now that's you thanks for sharing the story and i think that is that's really helpful to illustrate that even despite you being in the field you know you're experiencing you know some of these challenges for providing care for someone in your family and especially at a distance you know i think these are things many people are going through and without even the industry knowledge might even be struggling even more so appreciate your sharing that you know i think then on an aspirational level i think if you could have kind of like a gigantic build board anywhere you know with anything on it
ben_thompson (26:21)
okay
neal_shah__careyaya (26:24)
where you know you can have the opportunity to get a message out to millions or billions of people you know what would it say and why you know anywhere from a few words to en an entire paragraph
ben_thompson (26:34)
um the most important thing is having a plan in place and communicating that plan to your love ones um look at your state's adult health care consent act to know who your spokes person would be if you couldn't make your decisions and if you're unhappy with that person then fill out an advance directive saying who you would want to be your medical decision maker um if you're diagnosed with a serious
illness or a progressive condition or even something that seems more benign like high blood pressure which has a chance to lead to a serious condition like a heart attack or a stroke starting to have some of those real conversations with with loved ones well in advance you know the earlier you can talk about these things with people the better i recommend talking about some of those things around the holidays
um when or any time that your family tends to get together so i think that i think that having a plan in place i always say i would tell you a joke about early palliative care but nobody gets so getting early palliative care you know at the time of diagnosis of a serious illness can help your family i can help you can help make sure that whatever happens in the future there
a better chance that it's going to line up with what you want and what you don't want
neal_shah__careyaya (28:12)
thanks that's actually that's really helpful advice and something that i think many people would benefit from hearing you know any favorite books or you know kind of movies that you'd like to share with our listeners that have really greatly influenced your career or your life
ben_thompson (28:27)
i have a ton there there's a movie that was on neflix called one week it's about a guy named ben so i was already very partial to this who is diagnosed with a serious illness i think inoperable cancer and he decides to take a motor cycle trip across canada across the canadian highway rut one you know starting in toronto montreal
and heading west and it's an adventure story with a background of serious illness so if you have an hour and a half that's a great movie there's some really good palliative care books one is called being mortal by a tool go on i think this is a book that can help bring the basics of palliative care to the masses it's a very public facing book
and one of my favorite books to recommend to people who may be interested in doing what i do in palliative care is called that good night life and medicine in the eleventh hour it's a book by a palliative care doctor names shone pure who details all the experiences in her personal life both with her own family and through medical school and through her medical training that led her to a career and paliative care
neal_shah__careyaya (30:06)
that's great thanks actually really helpful recommendations and you know following up on that what advice would you give to a you know smart and driven young person who is about to enter the work force you know who wants to change the world for the better
ben_thompson (30:22)
specifically the health care work force or just the overall work force actually i think i think
neal_shah__careyaya (30:28)
let's say either both but now let's say health care since we're talking about the topic but good also be outside
ben_thompson (30:33)
i tell people who want to go to medical school or to nursing school or to pay school um two things one i tell them get experience in the medical field see if this is something that you want to pursue and the other thing i tell them is to go wake tables people forget that medicine is a service industry and if you spend a couple months waiting tables or
neal_shah__careyaya (30:55)
really
ben_thompson (31:01)
doing any other customer facing job i picked restaurant industry because i worked at a pizza place for a summer when i was in college you can see how upset people can be if you're a minute late with their diet coke on a good day you're out to dinner and you're having a good time and to keep that in perspective that in medicine we end up meeting people at some of the worst times of their lives you'll learn compassion you'll learn grace
and you can also have very tangential appreciation for how the service you provide influences the money that you receive
neal_shah__careyaya (31:44)
wow that is really unique insight and something i wouldn't have expected and i think many listeners will benefit from hearing that that advice um you know and then i guess in closing you know in an ideal world if you could snap your fingers and you know fulfill a dream of um equitable access to care you know for all that needed you what would that look like to you
ben_thompson (32:06)
um meeting people where they are meeting our patients and families where they are having an agreed upon plan for you know if you want to be at home um but your you live with your son who works during the day i'd like to find a way that we could safely fill that gap and care to allow the patient to remain at home i think we have
a ton of people who want to be part of this field you know the numbers of folks applying to medical fields nursing pharmacy p a medical school itself is continuing to increase but that we need to harness that work for us the people who may want may want to get experience and let them help keep our patients at home right that accomplishes a couple goals that accomplish
is us providing goal concord and care for patients and families and it gives students those interested in in joining this field the opportunity to see if it's for them
neal_shah__careyaya (33:21)
yeah great that's a great answer you know really really appreciate that and ah ben thank you so much so much for taking the time to speak with our listeners and share your insights you know we've just heard from ben thompson ahead of the palliative care fellowship program and prism health and you know just like amazing insights ben about both the field of palliative care and overall health care
neal_shah__careyaya (33:51)
system and in home care system and you know kind of insight on patients and families and what they're going through with serious illness so now thank you so much for taking the time to appear on our show um and ye look forward to continue dialogue and working with you
ben_thompson (34:04)
pleasure is all mine anything i can do to help