Dr. Barry Baines is back! Stan, Clarance, and Dr. Baines chat about Hospice care. Dr. Baines is a recently retired family physician and hospice & palliative medicine specialist with more than 25 years of experience as a hospice medical director. Dr. Baines is also the leading authority on the use of ethical wills in palliative care and other settings. Be sure to check out his book Ethical Wills: Putting Your Values on Paper. Listen along as Dr. Baines shares his wisdom and emphasizes the importance of hospice care.Join the conversation at healthchatterpodcast.comBrought to you in support of Hue-MAN, who is Creating Healthy Communities through Innovative Partnerships.More about their work can be found at http://huemanpartnership.org/
Hello, everybody. Welcome to Health Chatter. Today's episode, we're going to be talking about hospice care, which is an interesting subject that's gotten a lot of attention lately. We've got a great guest and you will recognize him as soon as I introduce him in a moment. We have great, great crew that I always like to Thank, and that includes Sheridan Nygaard, who's recording for us today.
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So thank you to everybody. So let's move on. Hospice today. We have Dr. Barry Baines with us, who's been with us on a couple of previous shows on Health Shatter. And he talked about And by the way, I recommend you listen to these shows on ethical wills and legacy letters and serious illnesses and how to talk to your physician about serious illness. Barry has recently retired. He's joined the crew.
And he's a family physician and hospice palliative medicine specialist in his practice program. He does education at the University of Wisconsin at Madison and Georgetown University and has co-authored a few books and publications. He has 25 years of experience as a hospice medical director and is board certified in family medicine.
His book, Ethical Wills, Putting Your Values on Paper, is now in its second edition. And you can check that out. And we recommend you do that. Ethical wills, putting your values on paper. Barry, thanks so much for being with us.
Yeah. It's great to be back.
Yeah, it's really, yeah, it's nice. You're a great guest and we appreciate all your, your great insights on a variety of topics actually. So let's get this going a little bit. I know that, you know, we put together some, some of the research, but also, um,
You wrote me and said, I'd like to describe the differences between curative care, remissive care, palliative care, of which hospice kind of falls in line with all of it. So maybe you can start us all out by talking about that.
Oh, that sounds good. So when people think about hospice care, To give it that context is that typically when we have illnesses and different diseases, there are different treatments for it. And as you pointed out from my notes, there's three types of care. Curative care, it's sort of self-explanatory, but that's care that you get to cure the disease.
And so to give an example, let's say you have a strep throat, okay? And you go to see a doctor or nurse practitioner, you know, whatever. And oh, yes, you have a strep throat and you're given an antibiotic and you're cured of your strep throat. That is curative. That is curative care. Remissive care is kind of a big word. And what does that actually mean?
Basically, it's care that's designed to slow down the progress of a disease. In other words, people have diseases that can't be cured. but they can be well managed. So one example is diabetes. Okay. Once you have diabetes with rare exceptions, I know there are things like pancreas transplants and stuff like that, more esoteric.
But in general, if you have diabetes, you receive remissive care, which basically helps to control the disease and slow down its progress. So in the diabetes case, it might be different medications that you take or insulin. People are familiar with hearing that insulin could be something like that. And so it's to slow things down.
And in fact, a lot of cancer care, okay, is focused on remissive care to really control the progress of the disease, hopefully so that people are able to, you know, have a quality of life and be around for a while as they move ahead. Then the third type of care is called palliative care. And people may be familiar with that as care that focuses on comfort and treating symptoms.
It's a kind of care that doesn't cure anybody of a disease. It doesn't slow down the progress, but the focus is on comfort so that people are comfortable as their disease progresses. Within that umbrella, if you think of palliative care as a little umbrella, under palliative care is hospice care. And that's, you know, that's exactly where it fits in.
And hospice care is a type of palliative care for those people who have a prognosis or a life expectancy of six months or less. And we'll get into this more. It's not an exact kind of thing where you have to, you know, circle a date on your calendar and, well, gee, if I, you know, if it's the wrong date, I can't get it, you If that's what's chosen. So we'll talk about that in detail.
We'll let that spill out and spin out a little bit as we go ahead. But those are the different types of care. And quite honestly, a lot of people are not clear on the types of care that they're getting, especially when it comes to cancer care. Part of that is that we want to be hopeful, we want to be optimistic, and we hear things differently.
I know there have been a number of studies where people who had very advanced illnesses, very advanced cancers, colon cancer and lung cancer, that they were receiving treatment that was clearly remissive. They weren't going to be cured of their disease.
And they thought that the treatments that they were getting 70 and 80% thought that the care they were getting was going to be curing them of their cancer. And it wasn't. So it's again, you know, you know, at the bottom line is always communication is very important. And so that people understand just to bring in a piece from the serious illness and talking with your doctor,
that communication becomes very important. The other piece as well is what are people's goals of the care that they receive? And that's, again, is another conversation. And we did cover a bit of that last time.
So that lays out the four different, well, really three different categories of care that people receive with the subset under palliative care being hospice care, which is what we're gonna focus on today.
Yeah. Clarence.
Yeah. Very. Thank you for that. I mean, that was so informative. In fact, as I was sitting here listening, I said, we got to put that on our website. We got to actually write that out so that people know that was very, very informative for me. But I think the thing that I want to say, I want to start off by by just saying this. When somebody tells me hospice, I automatically think like it's over.
You know, and, you know, you know, you said there's like six months life expectancy and things like that. Could you talk a little bit more about that? I mean, addressing that kind of emotional. I mean, when you hear that word, it's like, oh, man, this is this is it. You know, I mean, so it really throws some people off. Yeah.
You know, in terms of their really understanding what exactly what's going on.
You know, it's interesting you bring that up, Clarence, because it's kind of like there are certain words in the medical health arena that kind of make people shudder, okay? It's like if you hear the word cancer, it's like, oh my God, I've got the big C, okay? Or hospice, all of a sudden, okay, that's it, done, right? And it creates kind of an emotional response. But anyway- Go ahead, Barry.
Okay. Okay. And I'm going to do a little background painting as well, because even the term hospice has four different meanings. Wow. Okay. So I think we're going to focus on hospice care, which is a philosophy of care. That's the type of palliative care. We already covered that. But hospice also has the meaning it's a benefit that Medicare provides. It's a Medicare hospice benefit.
And in fact, not only is that a medical insurance benefit, it's also present in a lot of public health insurance programs and many, many private insurance programs, whether it be Blue Cross Blue Shield, whatever. Almost all of those types of programs, the majority try and mirror what's considered the gold standard of a hospice benefit from what Medicare does. does.
So even people who are not of Medicare age, if they have a terminal illness or a life limiting illness, most of the time they would be eligible to go into a hospice setting or not hospice setting. Well, let's stop and repeat that. Most of the time they'd be eligible to receive hospice care, even if they're not of Medicare age. The other definition, when we talk about hospice,
is like a hospice program. So most people who receive hospice care, it's usually through a hospice program that's related to home health. It's all of the care systems, certainly within Minnesota, have hospice programs within their services that they provide. And then the last thing is that hospice, sometimes people think of hospice as a place that you go to.
And in fact, there are some freestanding hospice homes that people can go into. These tend to be private pay, but some people might be familiar within our community. We have Weedham Residential Hospice, J.A. Weedham. We have the Pillars Hospice Home. Out in Oakdale, we have NC Little in Edina. And then there's also Our Lady of Peace, which is also in St.
Paul that offers a place for people to actually go and spend their last days.
So Barry, let me ask you, are there also the kind of facilities, I guess, for hospice care that are in And you're relating to what's going on in Minnesota. Are there analogous facilities that you know of in other states as well? Or does every state kind of have their own thing going?
Yeah, I mean, every state can have their thing going, but those are the, you know, the standard things. The reality is probably less than 1% of people actually avail themselves of services within a hospice home, as it were. Number one, because they tend to be private pay and they could be expensive.
Typically they're reserved for people who are really at the end, like days to weeks, generally speaking. And the vast majority of care and hospice is given in the person's home or the place where they're living that they call home. So it'll be either
you know, in their home, their, you know, a house, their apartment, you know, what have you, or if they're living in assisted living, or if they're living in a, they needing long-term care in a nursing facility, nursing home, they can, they receive care there. Hospice goes, hospice programs go wherever the people are. And that, and that's where they deliver the care
Um, and most people would prefer to be in a comfortable place. They're, you know, their home is surrounded by their loved ones. And that's, so that's sort of where the care gets delivered in the vast majority of cases. But when you talk about hospice, sometimes people think, oh, that's a place, right? You know, well, but hospice care, you receive wherever you are.
And in fact, if you start off in your home, And you're receiving hospice and then you need a higher level of care. So you go into an extended care facility or long-term care facility. Hospice follows you wherever you go.
Wow. Okay. That's really good to know. So let me ask you this. Talk about hospice professionals. So who are they? Are they physicians? Are they nurses? Are they just home care providers? Who are they? And do you have to be trained a particular way, et cetera?
So there actually are a group of people. Hospice is very much... When I was very involved with that, it's really a team type of care. I always say hospice is a team sport, but that's the lighter kind of thinking that only a hospice medical director might say.
But it's very important because within that Medicare hospice benefit, when people receive hospice, that benefit requires that a hospice provide
nursing care skilled nurse a skilled nurse social work a chaplain to deal with spiritual issues usually they have home health aides to provide some help at home with bathing things like that a medical director that sort of oversees things then in addition they also have to have volunteers 5% of the hours of care that hospice provides under Medicare have to be, you know, involving volunteers.
Like what, what would be a volunteer to just be with the person?
Right, exactly. So let's say, let's say I was in hospice, okay. As a, as a patient and and I have, and I elect to have, I mean, a person could refuse that, but hospice volunteers are trained. Actually, I usually, in my hospice medical director days, I usually am part of their orientation.
And then they volunteer, they work with, you know, with patients, they don't deliver medical care because they're just like, I would say normal people, you know, they're just normal people. And so let's say that I'm, I'm home and my wife is sort of taking, you know, care of me. But, you know, she needs to go out and go shopping as an example. So,
When a volunteer comes to stay for an hour or so, that would give, you know, my spouse some respite to go out, do some shopping, maybe go for a coffee with, you know, with a friend outside. So they kind of, you know, do that. They could, you know, we have volunteers that will play music, would read, you know, read to them.
Hospice, a number of hospices, these aren't required, but additional services, music therapy, pet therapy. So imagine that they, I don't know if Murphy or Riker would meet the criteria for that, but a lot of people, you know, they really connect with animals. And there's a lot of hospice programs have, you know, what's called pet therapy, you know, for hospice.
You oftentimes, the music therapist will also help.
you know sort of get a twofer and and cover you know not only the the music that they bring and that's very important because you know really it's soothing for the soul you know you have absolutely music that you like you know have a dog who hops up on your bed and just sits there and you could you know pet them and that make that does make you feel feel better better so the
array of services that you can get from hospice. There are quite a few of them.
So where do these, just for instance, where do hospice volunteers get trained? I mean, I kind of perceive it as a neighbor. Could be a neighbor that comes in and just spends time with you, but they aren't necessarily trained.
Yeah, typically what happens, the vast majority of people who become hospice volunteers, not surprisingly, are people who had a loved one who was in hospice and the care that they received. Hospice requires that if you did have a loved one in hospice, you had to wait a year before you could apply to be a hospice volunteer. Interesting. Okay. But the vast majority have that experience.
Yeah, no, I'm really learning a lot, again, from the work that you're doing. But how long does hospice care last?
Mm-hmm.
I mean, you know, you mentioned that, you know, Medicare, Medicaid. I mean, is there a certain period where people are in that category called hospice care?
Yeah. So the way the benefit works, again, it's designed for people who have a life expectancy of six months or less. The reality is we don't, you know, we really don't have a crystal ball on that, okay? And it's not like, oh, your six months is up, so you can't be in hospice anymore. The way it's set up, is for under Medicare, there's a benefit periods that they call.
So the first benefit period is three months. So the person gets enrolled in hospice and three months, you know, goes by. And then if they still at that time after three months, if everyone agrees that given the likely course of their disease, their prognosis is six months or less, they, can be recertified. And then there's a second benefit period of three months. Okay.
So that gets you the six months. Here's where the math gets just a little bit, changes a little bit. At the end of six months, once again, the patient comes up for recertification. Okay. They've been in hospice for six months. Has their disease been progressing while they've been in hospice? Have they been deteriorating or sort of going downhill basically.
But yeah, they've been alive for six months, but reasonably you would expect that their prognosis is still six months or less. And so they could be recertified, then the benefit period shorten up to two months at a time. And those require the medical director making a visit to the patients wherever they are,
and agree because the medical director is the one who has the magic of signing the paper that says I recertify, you know, John Doe as being appropriate for hospice for another two months. And then, and so literally every two months, a patient can come up with recertification. And all of us have heard stories, certainly in, you know, in medicine of people who have like cancer, which
is a high frequency reason why people are in hospital. Though these days we also see a lot of Alzheimer's disease in the end stages, end stage Parkinson's disease, some of the neurologic diseases like ALS, what people know as Lou Gehrig's disease.
Heart failure is another big reason why people go into hospice as their, their heart function declines and different lung diseases, COPD, chronic obstructive pulmonary disease, those kinds of things. In addition to you know, to different, to different cancers.
So let me ask you, you know, you mentioned the link between hospice care and Medicare. Okay. Where Medicare will cover hospice care. All right. Is it typical for health plans or insurance companies to cover hospice hospice or not? And if not, what do people do or what can they do if a person that they know is coming to the end of their life?
What do they do if hospice isn't an option for them through insurance?
Yeah. Well, if That's a very difficult question, so I'm going to put that out there. Because the vast majority of people do have access to hospice care. In addition, I can tell you that certainly within the Twin Cities, there are many hospices that will take patients and enroll patients in their hospice if they don't have insurance. Okay. And so they provide the care.
The focus, again, for hospice, the compassion level is very, very high. And to think that someone who has a very short life expectancy is effectively dying and having symptoms that are creating a lot of pain, oftentimes not only physical, but... you know, psychological, spiritual, and those services.
I mean, you know, part of humanity is to be compassionate and to try and accompany people on this last journey that they take. And so very often in those cases, people will, you know, find a way to deliver you know, hospice care. But in general, like I say, the vast majority of people have access to it.
That being said, one of the biggest issues we see, right, we talked about the other side, oh, well, six months, and I told you what happens after six months. And the big reality is that for this benefit that's designed for six months, the median length of stay in hospice. So that's 50% of people who are enrolled in hospice die in two weeks or less.
Wow.
50%.
Wow. Okay. Yeah. Okay. So what winds up happening is that people are refer to hospice very late in the course of their illness. Why does that happen? We alluded to some of that. It's about some miscommunication about the kind of care or treatments they were receiving, right? If someone thinks, well, I'm going to get cured, I'm not going to go into hospice.
Because typically when you go into hospice, the focus is just for symptomatic kind of medications and treatments and things that oftentimes, if it's not comfort focused, if it's designed to slow the disease down, usually that's not something that's covered.
So, Barry, let me ask this question. You know, as you're talking, I'm thinking about the individual that's getting the hospice care. What about the families or the caregivers around them? I mean, what kind of information is being provided for them or, you know, so they can deal with it? Yeah, can deal with it. I mean, is there a gold standard?
Is there requirements from the organizations that, you know, that there are certain things that they should be providing to the families? Because that's tough for everybody.
Yeah. Well, Clarence, that is such a great question because many people think that if you're getting hospice care, that you're going to have hospice care providers in your home 24 hours a day. And that's not the case at all. In fact, for home hospice, to deliver hospice in your home, you need to have the family support that's going to provide the majority of the care, basically.
In terms of making sure they admit it. In other words, you get skilled nursing visits usually once a week or once every two weeks. More frequently, certainly as the disease is progressing more, you get social work visits every month or so. You'll get chaplaincy visits every week or two, just depending. But most of what's done is educating the family for how to care for this person that is dying.
And again, home health aides will come in a couple of times a week to help like with bathing and things like that. But it's the family that's providing the majority of the care, again, under the guidance of the hospice team. And the hospice team, they're always available if issues come up for managing those kinds of things. And that's pretty much how the care is delivered. It's not
like a nurse from hospice who's sort of in your house eight or 10 hours a day, it's called intermittent nursing care. You get a couple of visits, always available by phone.
And the focus is always, especially let's say if there's pain issues, then there'll be more intense visits to make sure that the pain could be well-managed to the extent that the person wants their pain controlled or other symptoms, breathlessness, let's say if they're having you know, heart failure or lung problems. And so hospice will provide oxygen.
They provide all the medications they pay, you know, so you don't have to pay for any of the hospice medications. That's all included, um, equipment. If you need a hospital bed, for example, to cause people, you know, can't get up, you know, easily anymore. So a lot of the, what's called durable medical equipment, that's the term for that. Um,
So it provides all of those ancillary services plus the medical services. And the hospices that I work with, the primary doctor for that patient, the programs I've worked with, we've always kept those doctors as being still the primary care. That's another reason why people don't want to go into hospice because they're worried that they're going to lose their doctors.
And oftentimes, you know, who knows the pain? You know, it's the doctor who's been taking care of the patient for years and years and years. They know them and hopefully the family as well. So that trust piece is there. And that is so very, you know, so very important.
You can see it's a team.
A team sport here.
You know, it's, it's interesting for, if you ever, what I have noticed at least is whenever you read an obituary after somebody has passed, oftentimes I will read A really special thank you goes to the hospice team that cared for the individual. So people really connect with, or at least it seems as though they connect with the hospice providers of care.
So here's another thing, kind of sidebar thing. help or assistance. So you mentioned, you know, like a spiritual leader, we had one of our shows was on spirituality and health. And so Help me. I assume, you know, besides pets may be helping out, but maybe, you know, a pastor or some clergy or rabbi connects somehow or other with hospice care providers. Is that?
Well, they're actually hired by hospice. There are chaplains that are required.
Chaplains themselves, okay.
To be, and I mean, chaplains are clearly, however you want to turn that. They are part of the integral hospice team. You can't be a Medicare certified hospice if you don't have chaplaincy services as part of your hospice program.
And do they, are they trained as well? Or are they just- who they are as rabbis or pastors or whatever.
Most of the chaplaincy that are in hospice have special training that focuses on die you know dying on people who are dying and dealing with their you know with their issues um and you know even though they may be from a particular denomination it it's they take people where they're at and you know we certainly try if someone um let's say real you know let's say his muslim needs an imam um
chaplains, they have their network in the community. Or if it's a Jewish patient who wants a rabbi or a Catholic person wants a priest or a Protestant wants a minister, they reach out to help. The other reality, again, is that people are connected to their church in a generic sense. They're a house of worship. They're connected to that.
And hospice, again, reaches out if you've been in a religious, you know, setting with, you know, whether it be minister, you know, priest, rabbi, imam. Yeah. You know, you sort of want to continue with that. And hospice, you know, makes the connections to let that happen because oftentimes those people, again, they know the patients, they know the families.
And so we try and keep everybody in the loop. as much as either the patients and their families and those providers would want to be doing that. Does that make sense?
Yeah, yeah, yeah.
Clarence.
Yeah, so Mary, I think you mentioned that the medium stay in a hospital is like two weeks.
Yeah, the median, that's a 50% or less die in two weeks or less.
My question to you is this, and you talked about the fact that sometimes people come in at the later stages of their disease. Do you think people do not utilize hospice because of the cost?
No, because for, I don't think so, because the majority of people, there is no cost to them to enroll in hospice.
Well, do they know that? I mean, that's the question. Do they know that? I mean, because a lot of times- Because people are unaware. That's why I think this program is going to be so helpful. Because they're unaware of exactly what does that mean. A lot of times there's not that information or access to people that can accurately describe what's going on. Because people will say, well, it's over.
So people have their own emotional conversation about this. So I'm just asking, you know, Two weeks, I mean, that sounds like a family has gone through a lot. Yes. And I'm thinking, like, is it cost? Is it just an emotional thing? I don't know. I'm just asking that question. I just wanted to answer.
Yeah, yeah. I don't think it's not cost, okay? However, you make a good point. If someone is not aware of that... then they may think that there's a cost and that would keep them away. Generally speaking, hospice programs need to do evaluations from families after they deliver services. And for years again, I've been in the business for 25 years. The number one thing that families report
is I wish I had gotten my loved one into hospice sooner. That's the number one thing. Every doctor and nurse knows about hospice. Every long-term care facility, they know about hospice. Every hospital knows you know, knows about hospice and they certainly do talk about it. Okay. You know, when people are, you know, are in there, have you, you know, thought about that? Can I push you a little bit?
Yeah. Yeah. Okay.
Yeah. Okay, so families are saying, yeah, I wish I would have got them in there earlier, but do they say why they didn't get them in there earlier? Because I think that for me is, I wish I would have done that. There has to be some kind of barrier.
Right.
And the only reason why I'm asking that question is this, is that, you know, I think this is, I'm more seasoned now, so this is much more of a relevant topic for me as well. But I think that there's something that people are not getting.
Yeah, and this- This is something that comes on, I'm speaking now as a physician. Okay. That's our fault. Okay. And there have been a number of studies to give you, this will explain why is it two weeks or less for 50%. Okay. Yeah. Studies have shown that in general, physicians overestimate prognosis by 500%. Wow. Wow. Okay. Wow. So, so if, if your prognosis is two months, okay.
That, that realistically you're, you're going to live for 60 days. Okay. Most physicians will think that you're going to probably live about a year. And since hospice is six months or less. Okay. Well, you're not ready for, for a hospice because you know, and part of it, it's not, Like I say, it's on the physicians, but there's a dynamic.
It's the doctor and the patient to get together for this because people want to live. So it's a hard conversation to have, but that's one of the things. So in fact, one of the things that has been done for hospice is to get doctors to to think if they have any patients, like if you say, do you have anybody that you know is going to die in six months or less?
Well, if you overestimate by so much, you almost have nobody who meets that criteria. But we changed the question. We call it the surprise question. Doctor, do you have any patients where you would not be surprised if you open the paper in the next year and saw their name in the obituary that they had passed. Wow.
And once you, that's a very different, because six months or less, well, I'm just a doctor, you know, I'm not God. I don't, you know, I don't know. I don't know the end. But generally speaking, do you know what I mean? You say, would you be surprised if, you know, if Mr. Mrs. McGillicuddy, you know, died in the next year. And then you think, well,
boy you know probably not you know she has like pretty bad heart failure um you know and i know i wouldn't be surprised because then and then that's that's the patient that it you can be referred to hospice and hospice will have that conversation with you you don't have to choose to go to enroll in hospice but then you know if you get the referral at least those conversations
could happen more with people who this is what they do all the time. And they can lay things out.
You know, Barry, I wonder if it's part of the- Yeah, go ahead.
Yeah, let me say, because I love this conversation. This is why this is called Health Chatter, okay? Yeah, we're all chattering away. Yeah, we're chatting now. Okay. Because I think that part of what you said, I mean, the 500% overestimation, that's big. I mean, is it that the doctors are overestimating their patients? Their work, I mean, what they can do. I mean, you know what I'm saying?
I mean, as a doctor, you want to be able to say like, hey, you know, I had a patient come in and we were able to help them to get to this level. We helped them to get healed. That's really, I love that you entered this conversation. But I think that that's something that, you know, I'm going to ponder about.
You know, it's interesting. I was going to say kind of the same thing. It's kind of my perception of this 500%. It's kind of counter to what physicians say. want themselves. They want to be able to cure or better disease manage.
But as soon as the word, I guess, hospice comes into the conversation, that's counter to what they're trained for because they're trying to keep them alive and healthy and happy as opposed to death and dying here, you know?
Right. And, and to be, and to be clear, this is not, you know, This is not meant to be a blame game because the dynamic here, you know, it takes two to tango, right? And when, you know, for most people, as they go through their illness, their goals change over time. Okay. And many people's goals are, I want to live as long as I can. Okay.
And as you know, in medicine, we continue to have treatments that may or may not help that goal. And so it's one of these things where everybody is hoping... For, you know, for the best here. And so it's easy. Again, this idea of six months or less, that's a hard thing to, you know, to get your head around. And then you also have patients and their families and you have families that are not sick.
Have you ever heard of families that are not on the same page on things? Never. I don't know what you're talking about. So then there's all these, these, all these family dynamics, you know, as well that, that happens. So it's, it's very, it's very complicated.
And again, one of the things that sort of helps is the idea of reframing this, even though yes, six months or less, but if we think in terms of a,
larger time frame we know that it's going to be less than that most likely okay because we tend to overestimate prognosis so if we you know so that to me is the key that's sort of the the key and that was why i wanted you to answer that question okay i i hope i answered it no no you did you did you did yeah but you answered it in a sense of this that it's a struggle for everybody
I mean, it's a struggle for everybody. I mean, as you just said, Sam talked about the fact is that he or she wants the person to live. The family has dynamics. The patient has dynamics. And so when you get to this point of talking about hospice and hospice care or end of life kind of conversations, you have to be exposed to
to the variables and not have a fixed mindset on this is how it's going to be. And that's why I, that's why I pushed.
No, I think it's, I think it's great. And the other thing to realize that a lot of people probably don't don't, they don't know this. When I was just doing my regular family practice stuff, not my, you know, my family practice stuff, with seeing patients and things like that. I, you know, used to do what I call womb to tomb, you know? Okay. I had very few patients in the course of a year who died.
Do you know what I mean? I had maybe a, maybe a handful. And so if you just run into that every few months or so, unlike treating diabetes or high blood pressure or strep throat, where you see a lot of that, you know the drill, you know what to do.
With end-of-life care, and it doesn't, for again, the general primary care physician, an internist, a family physician, as opposed to, let's say, geriatricians or oncologists, cancer specialists, you know, even cardiologists who tend to see the more difficult heart failure things.
If you don't see lots of patients, you don't, you don't learn the drill for how to have, you know, how do you have those conversations, which as you can imagine are very sensitive conversations. They're very difficult conversations to have.
So let me, let me ask this question. So it's, I sense that, Barry, you know, when you're dealing with hospice care, you're also dealing with cultural issues. Okay. And, you know, for some people, you know, somebody who's dying is, oh, my God, you know, it's the end of the world. On the other hand, you know, people celebrate. You know, there's some cultures that really celebrate that.
So how does hospice care deal with that? cultural issues?
That's another great question. That's why I love being on Health Chatter. Our conversations are just so good. Actually, everybody is aware of cultural competency. Or at least they should be. The hospice team is very sensitive to the cultures that they're working in, which are a diverse set of cultures.
And you could be part, as we all know, you could be part of a culture, but you still need to know individually, what does that mean to that person? Okay. You can't say everybody, you know, who's part of this culture acts in this way and has these wishes. No, it's not the case. So it's, it's recognizing and asking the question directly. So how do you, you know, what is,
You know, how do you and your family approach end of life? And then when they tell you then and that that informs the treatment plan moving forward, because then you know. So it's being being humble enough to know that it's OK to not know.
Culturally sensitive.
And be culturally sensitive and ask. I don't know. So I would ask Clarence, what has been your experience with people in your family who have passed? How did that go? And how do you see this for yourself? And so you ask, you listen. And that's the other thing is that hospice care in general doesn't have, we don't have our agenda yet. Like our agenda is sort of, what are your goals?
And how can we help you to meet your goals? That might not be what I would want to do, okay? But it's not about me, right? It's about you.
Let me interject real quickly here again, okay? I'm in a probing mode here. I'm in a probing mode here, okay? When you talk about being culturally competent, I mean, you know, I think that question should be asked to everybody. Because just because a person looks like you does not mean that they think the same way that you do. Exactly.
To think that it's only with those people, you know, really, really throws the thing off. We're human beings. So even though we look alike, it does not mean that we have the same life experiences, emotional experiences. So I think that's a great question to ask everybody.
I agree 100%. We are all unique. We are all unique.
So, Barry, you had mentioned at the front end of the show, palliative care, which in my, the way I kind of perceive that is overall disease management. But let's, you know, for the listening now, let's do this. Somebody's in the hospital, a loved one is in the hospital and they're not doing well and it's end of life is coming. Take us a little bit step by step in order to connect the
everybody to hospice okay so like use me i'm in the hospital and i'm dying okay what would what would health care providers do for me and for my family in the hospital to step by step to connect me who connects me to hospice for instance okay well if you're in if you're in the hospital yeah okay um probably it would be either
your attending physician, your doctor. or the nursing staff, they may have had the conversation with you a little bit like, Stan, there really is not anything more that we can do at this point to slow down the way your disease is going. And realistically, you have a few months left to live. Let me tell you about OK, the doctor will say, let me tell you that we have this other
you know, kind of care called hospice care that focuses on keeping you comfortable and improving the quality of your life as best as can be done in the remaining time you have. Is that something you'd be interested in? And you would say, of course, you know, yes, I think I've been on this road.
I've been back in and out of the hospital, you know, every, every month for the past, you know, five months, whatever. And they say, great, we're going to have, we'll ask a hospice program, you know, person to come in. Oftentimes hospitals have palliative care teams. Okay. In hospital services who can come in, they're not hospice. Right. Palliative care, but they can come in. They're well-trained.
They will have those conversations with you. And together you'd say, you know, I think I'd like to go with hospice. Got it.
And so they do that with you. And your family.
Yes, yes. These are family conversations. And then while you're still in the hospital, either they can get hospice to come in to see you, but hospice really can't enroll you until you're home. Okay, so it might be, Stan, we're going to send you home tomorrow morning, and tomorrow afternoon, there's a hospice program that's going to come out and talk with you.
Hopefully they could come in and say hi to you while you're in the hospital and say, Stan, we'll, you know, we'll see you tomorrow after you get out and we'll get everything together. Talk about your, you know, your symptoms, making you, you know, comfortable, et cetera.
So it starts with the, with the attending physician.
Oftentimes. Yeah. Yeah. Yeah. Yeah. But it could also be, you know, friends, friends and family, people who have had experience with that. The information can come from anywhere. This is one interesting point. People with very advanced lung cancer, they just looked at people who just received the regular treatment of chemotherapy, all that stuff, and people who had all that same treatment.
In addition, they also got palliative care, not hospice, but palliative care, which again is designed to focus on symptom control, et cetera. People with the same prognosis for cancer If they also received palliative care, they lived a month or two longer than people who just received remissive care.
Interesting. So that's where the disease management comes in.
Well, the symptom management. It's more because then your mindset is there, your mental stuff. is really the mind can do really big things for us and so so that's just another thing why trying to get people involved early and that's why you see you know people asking for support in the obituary and they talk about how great hospice was and and my family say i i wish
we have this for for longer it's still a gift though you know even if it's a short time okay there's a lot of things that can get reconciled that can get done to put everybody at peace and so even two even two weeks could be a gift you know what i mean i always say we want we want more
I love that. I love that what you just said, because I think that that's that's the that's the issue that happens so many times with family. There's so many unresolved issues at the end of life. You know, you know, what didn't I do? What didn't I say? You know, you know, I always say I want to when I die, I don't want to have to say I wish I would have.
Right. Right. Right.
If you got two weeks, if you got, you know, if you knew you had two weeks, you could get a lot of things resolved. So I appreciate this conversation. I know that we're coming to the end of our show, but I really appreciate. I mean, because you really seriously, this has been a great show. In fact, I'm thinking about who do I send this show to specifically in my life.
And I'm hoping that our team, our research team will put together those three, actually those two sets of terms that you talked about, because I think that would be very important for people. to really, really understand when doctors are talking to them or when they are presented with these opportunities, what they're really looking at.
I guess what they're really, really looking at versus this whole idea about, I think, no, we need to know that we're on the same page as you talked about. So thank you, Gary, for my perspective.
you know it's interesting great questions too you know it's interesting you know uh for our listening audience my my pooch just came in uh and it's sitting next to me here and it's interesting you know i i was thinking how it is that we um we humanely deal with end of life for our pets okay and how much of a of a major, major difference there is between how we as humans deal with that.
It's much more complicated and harder, but perhaps there's some lessons to be learned from our pets in our lives as well. So Barry, I truly thank you for your insights. This has been a really, really great show. And hopefully our listening audience will appreciate the insights and the information, and hopefully it'll guide their decision-making when they need to going forward.
So for our listening audience, I want to say, as I always do and end our shows, keep health chatting away.