Arif Kamal - Palliative Needs-Based Care for Older Adults

Older adults need care that is based on their needs, not the facility or doctor's demands. Palliative and hospice care for seniors should be available to those who want it without judgment so they can end life with dignity and peace in a comfortable environment surrounded by loving family members. As a society, we need more services like this which will ensure older people have access to medical help when needed but also leave them feeling dignified at all stages of their lives.
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Timestamps:

[00:00] Introduction to channel
[01:00] Introduction to Dr. Arif Kamal, M.D.
[01:56] Tell us a little bit about yourself?
[02:25] What is palliative care? Who needs it? And how is palliative care and hospice similar or different?
[07:35] How are these services different?
[10:12] These services can be quite expensive. Do you believe these services should be covered by insurance companies?
[13:51] What programs have you seen to take advantage of the new health care laws that make it easier for patient-centered care and hospice care?
[17:29] What are some ways palliative care teams typically accomplish improving comfort and quality of life for older adults with a terminal illness?
[24:34] So, you work together with the care team to meet those goals?
[25:03] Explain why a movement towards needs-based care instead of a disease or prognosis-based care and what are there some of the ways in which we can improve health care system to a needs-based?
[30:07] How will giving needs-based care helps decrease the inequality gap?
[34:20] How does palliative care focus on the needs of the caregivers?
[39:01] Why is it so important for professionals to get involved in their community, to provide support for those in need, especially younger people who may feel overwhelmed by the illness they're caring for at home? (Very common, especially during COVID.)
[41:25] If people want to reach out to you, learn more about your work, and support that, how do they do that?
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Bio:

Dr. Arif Kamal is a Professor of Medicine at Duke University and a palliative care physician.  He is a passionate advocate for delivering high-quality palliative care to patients/older adults with serious illnesses and achieving better patient outcomes.

Learn more about Arif:
LinkedIn: https://www.linkedin.com/in/arifkamalmd/
Website: https://www.preppedhealthllc.com/
Twitter: https://twitter.com/arifkamalmd
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Transcript

Hanh: 0:00

Hi, I'm Hanh Brown, and thank you for tuning in, this conversation is live streaming and all these various social media platforms. We're all about older adults. It's time to bring the wisdom and perspective of those who have mastered life. So please check us out at our newly named YouTube channel. Aging Media Show. This is where I put all of the video podcast recordings from Boomer Living. Also, I will share topics on digital health, senior housing, senior living and aging in place to help you understand what is happening in our world as we age. We will be talking about strategies for caring for older adults and tips on how to live a healthy life. On this platform, I will feature guest appearances by experts to share how technology is changing our lives and what it means for society and how long term memory loss affects everybody, our parents and grandparents. So visit us on our newly named YouTube channel, Aging Media Show. My guest today is Dr. Arif Kamal. Doctor Arif Kamal is a professor of medicine at Duke University and a palliative care physician. He is a passionate advocate for delivering high quality palliative care to patients, older adults with serious illness and achieving better patient outcomes. You know, end of life is a sensitive topic that many people don't want to talk about. Certainly not a topic that you bring up at a Thanksgiving gathering, but it is a an important one. So we need to start having more conversations about palliative care and how we can improve the quality of life for those who are suffering from serious illnesses. So by learning more today about palliative care from Dr. Arif, we can make sure that our loved ones have access to this type of treatment when they need it. So, Dr. Arif, welcome.

Arif: 1:54

Thanks for having me.

Hanh: 1:55

Great. So other than your professional profile, can you tell us a little bit about yourself?

Arif: 2:02

Yeah, I'm I'm a father and a husband. My children are eight and four, and so our weekends are busy with soccer and running around and doing various things that they love to do. We love to be outdoors people and being at the beach. And so we take life seriously on all the ways that we need to. But we also don't take ourselves too seriously at the same time.

Hanh: 2:22

Great. Thank you for being here So let's bring everyone on the same page. What is palliative care? Who needs it? And how is palliative care and hospice similar or different?

Arif: 2:35

Yeah, those are great questions and it's important to be talking about that, because this is not inherent knowledge that people learn in in school or college or other places and oftentimes not discussed in the media. And, you know, recent literature still demonstrates that despite sort of the growth of this concept of palliative care, that three quarters of people in the public still don't really know what it is. So it's important to get that out there. I think about palliative care in two ways. The first is sort of a philosophy of care. And the second is actually a medical specialty. So as a philosophy of care, I would say palliative care means that we recognize and understand and spend deliberate attention on the quality of life for patients with a serious illness, a debilitating or chronic condition and their caregivers. And it brings specific focus and attention in a way that oftentimes we might assert to be true, but without actually spending a lot of time and attention on it. We've known that health care in and of itself from the beginning of time has been about trying to reduce suffering and and prolong life. But what we also recognize, particularly the last 50 years or so, is that the health care delivery system itself might introduce suffering in a way that's different than a hundred or two hundred years ago, that we think both about the illness itself and its effect on our bodies and our emotions in our minds, but also our spiritual and sense of well-being, our sense of purpose, and importantly, the effect of that on our loved ones around us. And so as we start to recognize that, we say, well, gosh, if we're going to provide deliberate attention to this issue, let's think about how to make sure that the health system is thinking about these issues, that we're weighing the risks and benefits of all the different technological innovations, for example, that we can provide to patients by asking ourselves not just the question of what can we do, but what is the right thing to do. And at answering the question of what the right thing to do means making patients and caregivers the north star of everything we do. So at a philosophical level, that's what we mean by palliative care. And when I explain it that way, people say, well, that sounds like mom and apple pie. Who wouldn't want them? So you're right. I think palliative care is something that everybody actually wants. Once they first understand it, importantly, recognize that I'm not talking about a particular severity of disease or life expectancy or something else. I had a patient yesterday, in fact, asked me, you know, the the doctors brought up palliative care. I didn't think my mom was dying. And I said to her, yeah, you're right. It doesn't sound like your mom is actively dying, but it sounds like you could need an extra layer of support. And we use that phrase to talk about the specialty of palliative care. So when we say that patients and their caregivers have complex needs or time intensive concerns or other things, that maybe the general health system doesn't have the sort of the time or skills to be able to address. And for them we think about the specialty of palliative care being involved and for those patients and their loved ones. We think about nurses and chaplains and social workers and pharmacists and physical therapists and physicians working together to create a plan of care that takes into all into consideration all the different sources of distress that person may have. And when I explain it that way, people who have experience with hospice say, well, that sounds a lot like hospice to me. Well, it does, because palliative care is especially was born out of hospice, you know, about 30 or so years ago, because we started to realize that that type of team based care, focus on the distress that people have makes good sense and people want it and importantly can't just be delivered by one clinician. But it really requires multiple clinicians thinking about all the different sources of distress because it works in hospice. People said rightfully so. Well, why? Why does someone have to be actively dying to get this type of care? And we said as a field, you don't have to be. And so that's where the field of specialty palliative care was born. The idea being upstream to active death. We provide this team to focus on all the different types of areas of distress and put together a really nice management plan that focuses not just on the the ifs in life, but the winds in life. And so the reason I say that is there's lots of things that can happen. But as clinicians, we also recognize for patients, particularly older folks who may be on a certain trajectory because of an underlying illness or dementia or concern or multi morbidity, et cetera, that we can start to think about potential bumps in the road into the future. And as clinicians, what we say is, well, that's the planning component of health care delivery. And in palliative care, we do a lot of that. We help people think about, well, what would you think about if this thing changed? What would you think about when this transition occurs? What's the best way for us to take care of you? And fundamentally, that's the question we're asking in every conversation we have, is what's the best way for us to take care of you? And we can only know the answer to that. Once we understand what's important to you.

Hanh: 7:32

Mm hmm. So now how are these services different? I think you sort of elaborate on from hospice care or other forms of end of life support that are available in the US.

Arif: 7:44

Yeah. And so when when people t of hospice in the classic sense, although there is some changing now happening around this, we think about patients whose life expectancy, if if the disease runs its usual course, is measured in six months or less. Now, there are upstream hospice programs, and at some point the vernacular becomes a bit gray, because really what we're saying is for patients who have a serious or complex illness, sometimes prognostication, meaning predicting time can be pretty difficult. Dementia is a really good example of that. Parkinson's disease is a good example of that, too, where oftentimes it's hard to exactly say where people may be on a particular trajectory. And that uncertainty and complexity can be stress inducing for patients and family members because they want to understand how do I best plan for both the things that may happen and the things that will happen. What we talk about in palliative care is hoping for the best and planning for the rest. And what that means is by planning for it, we don't think that that will make that event come quicker or come true, but that we're prepared for all the different twists and turns that can happen based on experience and also by helping patients and family members think about different scenarios that may happen in the future and whether those scenarios would be acceptable to them or not. It's really about curiosity and humility on our side and exploration on the side of the patient and caregiver. Now, as we transition into hospice, we're really talking about a laser focus on making the best of the time that that exists. We hope that patients live longer than those six months, and that's why it's not a condition of continuing on hospice, per se. And we hope that patients get continued value not only during that time on hospice, but we also think about the time after they have died into the bereavement period. And we want a supportive care system in place that helps take care of the bereaved family members after their loved one is passed. And that's all encompassed within sort of the hospice philosophy. But as you take a step back, as I was talking about palliative care as a philosophy, we're really saying as a, as an overarching umbrella, we want to think about improving and maximizing the quality of life of the people we're taking care of for some portion of that. Those are folks who are actively dying where we think about hospice care for the vast majority of those people. They are somewhere else along the continuum where we want just want to make sure we're assessing all the things that are distressful to them and putting a plan in place to manage those.

Hanh: 10:12

Mm hmm. Mm hmm. Now, these services can be quite expensive. Do you believe these services should be covered by insurance companies?

Arif: 10:20

Yeah, that's an important quest And oftentimes, you know, sort of unclear. You know, from an hospice perspective, the Medicare hospice benefit was really one of the first first ever federal payment programs that provided this type of all encompassing team based approach that was really focused on needs at a particular stage of a person's illness. And so for any person who is seeking hospice services. Yes. Medicare and Medicaid to to the most part will cover this, and largely commercial insurance will as well. And so in my clinical experience between that and the philanthropic programs within hospices, I've never had a problem where those services are not being covered in some way outside of the patient, in the family. Occasionally hospices can and do charge for co-pays, but those are all sort of based on situations in need and circumstances. And so, again, in my clinical appearance, I've never run into finances being an issue. Now, the caveat to that is that hospice clearly has limitations. And these are important limitations, particularly when we're thinking about what are the needs of a person who may be in the last six months of their life. And so we think about for for those patients that oftentimes they have nursing or physical function needs that can outstrip what caregivers can provide in the home. And that becomes oftentimes a frequent challenge, which is I want my loved one to be at home. I may not be able to provide all the care that they need. How do we layer on additional services? In hospice in its current structure, although there's a lot of innovation happening in the field right now, is not able to provide continuous care in the home for, for the vast majority of people, with some exception. And so that remains a real challenge. And as we think about innovative care delivery models for for patients who are facing these challenges, we really think about programs that can fill that gap for who financially may be not be able to hire, let's say, private duty nursing to cover the rest of the time that the caregiver cannot. You know, we think about innovative programs that can solve that problem for them. On the palliative care side, palliative care is is billed in the same fee for service way as any other sort of Medicare or commercial insurance program is covered by all the private insurances that I'm aware of. And for example, in the state of California, it is legislatively mandated that Medicaid covers it and that that services are provided for all residents of California . And my hope is that over time, state legislatures continue to realize the value of care and really kind of bake it into their payment programs. I would encourage everyone who is listening and watching this, if they want access to palliative care or hospice, don't let finances be a barrier to that. There are ways to work through that, particularly through community programs, nonprofit programs, et cetera. And so I would challenge everyone to to to get through those barriers.

Hanh: 13:22

Great information, thank you. So patient centered care, I guess in layman's term is when the patient learns about themselves, it helps them take ownership and accountability to know what they need to do. They gain more knowledge that can be where they can be active in their treatment plan, which may make them feel accountable and better about themselves. So as more providers start using these things. What I guess the health system will be able to provide high quality care at a lower cost. So what programs have you seen to take advantage of the new health care laws that make it easier for patient centered care and hospice care?

Arif: 14:00

Yeah, well, you know, first, I think it's important to recognize that for decades and decades there really weren't reimbursement and incentives that aligned with doing this important work, because you can't know what's important to a patient and their loved ones until you ask. And whenever we assume as clinicians, we're oftentimes wrong. And we have our own sort of implicit biases and heuristics that oftentimes are highly influenced by our own personal and professional decisions we would make. So, for example, there's good evidence to demonstrate that physicians would make very different decisions at the end of life, oftentimes compared to their patients , and just recognizing that there's neither a right or wrong way to do things, but recognizing that the person who's sitting across from us may not think about the situation the same way we do. Is the humility you have to have 100 percent of the time, because any time we think we know, once you start to ask, you recognize very quickly that that, in fact, there's a lot of missing pieces of the puzzle that that exist. And so I think, you know, all innovations in this space have to start with having those conversations that are led by clinicians and that are frequently touched upon and readdressed and understood, because people's values and preferences predictably do change over time. And we know from good research that, in fact, our ability to predict what would be acceptable to us from a quality of life perspective five years from now is very difficult, because as human beings, we see and what we know is now and today and oftentimes we under recognize our resilience for future changes that happen in life. So, for example, there have been studies in patients who have advanced kidney disease who may be over the next few years will need to make a decision about chronic hemodialysis. And so if you ask in the preparatory phase, what do you think? Oftentimes patients and I see this in my own work, too, will say, well, I could never imagine having to go through X, Y and Z. And then oftentimes what happens, particularly in the case hemodialysis, is they come to that point and say, well, actually, I don't think it's going to be that bad. And in retrospect, after, for example, starting dialysis is not the case for everyone. They may say, well, actually, that wasn't as bad as I could have thought. And so being humble to the idea that we can't oftentimes know, and thus it's important to recognize that that people remain facile and agile in terms of what their values and preferences are, because they are a really important thing. I think one of the greatest changes in health care reimbursement was in a fee for service way, reimbursement for advance care planning discussions. And so when those codes, those reimbursement codes first came out for Medicare and then quickly followed by commercial insurance, we put our money where our mouth is. Right. So what happened was we said it's important to have these conversations. And now payers said, well, good, we're going to incentivize the systems to have those conversations with people, readdress them over time and make sure what we're delivering is actually patient centered care, because the patient told us what that looks like. And I think that's important.

Hanh: 17:18

Mm hmm. So let me ask you if the ultimate goal for palliative team is improving comfort and quality of life for older adults with terminal illness?

Arif: 17:27

Yes.

Hanh: 17:29

What are some ways palliative care teams typically accomplish this goal?

Arif: 17:35

Yeah, so I you know, I think about a couple of different ways, I'm just thinking back to my clinic from the other day, you know, these conversations, one are generally time intensive and are are open. And the reason for that is I think that all patients and caregivers and we believe this is a field, deserve clinicians who are agnostic to the outcome in their approach. And oftentimes we're sent patients or we see patients where there's a particular agenda in mind that the that's either implicit, that sometimes explicit, but oftentimes sort of read between the lines that may be about, you know, this person's utilizing the ED too much or they're doing this or that or the other. And I think what we want to do is take a step back and first and foremost, understand who it is we're talking to. What are their lived experiences, what's their background, what's important to them. And there's a lot of ways to get at that. In fact, I have a fellow start with me a few weeks ago, and what I emphasized to her is we cannot underappreciated the importance of rapport building. And I think it's Maya Angelou who said that people may not remember what you know or what you said or what you did, but they'll remember how you made them feel . And for older Americans who are facing a complex or serious illness, I think what they remember is how we made them feel in terms of being heard and understood and valued as a human being, first and foremost, before we understand them as a patient. And that's why I don't even start and my colleagues don't start with well I went to your medical chart. And what I noticed is you have this, this this is and this. I start with them as a person. Tell me who you are, where you're from, who did you bring with you today? And we kind of go through that. And when people see that you see them as a person, I think it builds trust and rapport towards making difficult decisions that oftentimes are conversations that come up. And so as we start to do that, then we oftentimes transition, make sure we focus in on what are the prevailing symptoms that are affecting their quality of life right now. And so oftentimes that may be pain, shortness of breath, insomnia, depression, anxiety, adjustment disorder. Oftentimes that may be conflict that they may be having within themselves between them and their their God with a big 'G' or a little'g' within their family, et cetera. We assess for spiritual and existential concerns. So questions like why is this happening to me? Right. So, you know, I've done all these things and I've done I've been a good person. Why am I facing these particular challenges now? And exploring that is really important because, you know, oftentimes we expect patients to maybe have figured that out. And and that's a journey. And that journey may involve their local clergy or a chaplain or counseling a social worker, et cetera, to really sort of explore through that. I've had cancer patients ask me, so I'm forty years old with metastatic incurable colorectal cancer, or I'm a 70 year old priest who has never had a medical issue in my entire life, and now I suddenly have ALS. Why is this happening to me? And the answer to that is not a scientific answer, because the nature of that question is not a scientific question. It is an existential question? It is. There is something threatening my personhood and livelihood, and I'm just trying to figure out why. Why is that me that's happening, that that's happening, too? And so we explore issues of that. We also try to, you know, as I said, uh, hope for the best and prepare for the rest. And a lot of that is talking about the future, how things will change and how they want to be best cared for as those things happen. And so a common question that my colleagues and I ask patients is, as we think about the future, what do you hope for the most? And when I say that oftentimes we we don't understand these issues is because when they answer that question for me, I immediately go, well, I wouldn't have guessed them. And so we think about things, common answers like family independence, of being able to do the things I love to do. But when we push people, that gets to specificity. Tell me which family members, and then we start to hear stories like, I want to see my granddaughter graduate high school. When is that? Well, that's coming up in three months. OK, so let's work on a plan to make sure we get to feeling as good as possible for that particular event. We hear lots of things about, you know, I've had plenty of older veterans who, you know, you can tell by the by the thickness of the palms of their hands, the hard work they've done in their life who say when I'm gone, I don't want Martha to feel alone. And what we end up doing is facilitating a conversation between the patient or their loved ones. And I'm just there to help them talk to each other, because oftentimes these are issues they've not brought up on their own because they're difficult to to talk about and not naturally occurring, as you said, at Thanksgiving or around the dinner table. And so what we want to do is foster those conversations to to occur and remain agnostic to the outcome. So I think a lot of times people get concerned. You know, this happened with the death panels discussion during the Affordable Care Act, legislation that if the concern is that you have if you have a team called palliative care, get involved, that they must have a particular agenda in mind about lowering costs or utilization or not using chemotherapy or other things that are happening. And I can tell you, my colleagues and I are absolutely for being agnostic to the outcome. And I say to patients and caregivers all the time. Let's talk about this issue. I'm interested in your thoughts about it. And importantly, I want you to know that whatever you decide, I'm going to support you as best as I can in that way. And so guess what? In my practice, I've had 99 year olds die in the ICU with chemotherapy running through their through their veins, because that was the choice that they wanted to make. Now, is that the most common answer? No, it's not. But I think it's important for people to realize that that is after a conversation about their values and preferences. The conclusion that they make. Then we're going to support that and try to get them ready for that kind of thing. At the same time, I've had, you know, fifty five year olds say I've lived a good life and I don't want to pursue chemotherapy at all, as an example. And that might be a quizzical conclusion for others in their peer group or their family who say, well, you've got so many potential years ahead of you, why wouldn't you? And they say, well, no, this is what's best for me. And I thought a lot about it and and so on and so forth. And so I can tell you as palliative care teams, we may sometimes hear things that disagree with what we would do or what we would recommend to our family members. But what's important is that we remain side by side lockstep with the patients and their family members, regardless of the decisions that they make. And that's an important ethos of what we do. And a part of the discipline of being in the discipline is being able to to hold simultaneously. I might do it differently, but I'm here to support you in whatever you choose.

Hanh: 24:32

Mm hmm. Mm hmm. That's great. So from what I hear is that you don't see, the patient as their illness. They're not identified just as their illness. You work with them in understanding their goals, their aspirations. Perhaps they want to put some closure in any things that are, you know, open unsettled in their lives. So you work together with the care team to meet those goals?

Arif: 24:55

Yes.

Hanh: 24:55

I mean, really, that's what whatever the patient centered care wants to live out in the later part. So that's great. So now explain why a movement towards needs based care instead of a disease or prognosis based care and what are there some of the ways in which we can improve health care system to a needs based?

Arif: 25:17

Yeah, so, you know, palliative care clinicians, including myself, we use language very deliberately, actually, and so when I talk to patients about the if and when I talk about the when of things that I'm nintey nine to a hundred percent sure are going to happen and change. And so as a field, you know, we quickly transitioned our language to talk about serious and complex illness and injury, to recognize and put the onus of that definition actually back in to the persons and their caregivers that we're talking about. Because when you talk about a stage of disease or severity of a particular illness, you're really talking about as defined by the medical team. Right. As defined by a set of standards or guidelines or something that is stage four is not cancer is not stage for cancer. That definition was not brought up by the patient or the caregiver, that that was the medical team that that came to that conclusion. Now, objectively, that may be the case. At the same time we know that there are early stage patients with dementia or cancer patients with patients with cancer, with early stage breast cancer, where the diagnosis and the ripple effect of that diagnosis across their family and community, sense of self, sense of spirituality, and growth and other things is changed in a way that that is, you know, completely upends their life. And it is unfair, I think, as a medical system to say, well, that's only early stage dementia. You don't deserve need or could benefit from the services that I'm discussing here in terms of especially palliative care. And we do a huge disservice when as clinicians, we editorialize what someone deserves or could benefit from based on a CT scan or a lab value. I would rather think and our field is behind this one hundred percent think about going to the patients, their families and saying, what's on your mind? What makes a day difficult? What are you worried about? What do you lay in bed at night and think about? What what hurts both spiritually, emotionally and physically? Right. And that if they are hurting or suffering from something, regardless of the stage of disease, then we need to activate devoted professionals to go and explore that, try to fix the things that we can't and fix the things that we can and be present for the things that we cannot. And I think that movement really is towards then is a complete needs based approach where we say we should deploy meticulous assessments of distress across multiple domains physical, emotional, spiritual, legal and ethical, caregiver, financial, residential, etc. so that we can understand where all the source of distress are coming from. And we've learned this from the beginning of the field. In fact, when hospice was started by the Dame Cicely Sanders in the UK, she really talked about the concept of total pain. The idea that when someone is suffering pain with and with an illness, that that pain has more drivers in it than just what we might see on a scan or measure in a lab test. Then, in fact, we recognize very well that people may have spiritual pain that is contributing to their sense of physical pain, that they may have emotional pain and so on. And I've seen this very clearly where people say as an example, I think by having this advanced neurologic disease that God is punishing me and my sense of pain, physical and otherwise, is an atonement for a misstep in the past. Now, that is a clear indication. Let's say I'm talking to a patient and they bring that up. My responsibility as a palliative care clinician is to ask that and assess it and importantly recognize that we're going to have to address this and dig deeper into it. And I have colleagues, for example, chaplains and spiritual care advisors who can do that for me. Importantly, I can't do that on my own. And I think that's what we're really after is saying meticulous assessment, understand the need, and then target the right services at the right frequency in the right way, telehealth, home-based, in the clinic , in the hospital, et cetera, to address those needs. And I and I and I see I sense that that's where health care is moving. I think we just have to be more deliberate in our language about it to say this is actually not about whether your stage three or stage four. This is about whether you've got a lot going on, some going on where you want us to keep an eye on things as things move forward.

Hanh: 30:05

Mm hmm. Wow. So now, how will giving needs based care help decrease the inequality gap?

Arif: 30:15

Yeah, I think it's I think it's it's a great question. I mean, clearly health care is waking up at various different levels, and particularly also in hospice and palliative care and supportive care across the board into this idea that we don't have equitable access to particular services that I'm talking about. And so it's very clear that things like specialty palliative care clinics are not ubiquitous across the United States. And in particular, we see areas, you know, non urban areas, rural areas, in particular states where the access is definitely different. And we recognize that there are also particular populations with various demographic backgrounds and so on that are sort of caught up in that inequitable access to our services. And I can tell you, as a field of palliative care, as a philosophy, health care systems are really moving towards investing in these programs so that, in fact, we are. And I think telehealth is moving this forward even quicker than we could have imagined, providing access to those patients in a way that may not be in person, but still gets these services out to them. As we tackle those challenges on the delivery side then we have to think about those challenges on the receipt side as well. And what's important to recognize is that and I started by talking about this, is that oftentimes we have a bit more of a hubris based sense of what we think is valuable or important to the people that we're talking to. And this this, for example, shows in clinical trial data where we can see in certain areas of research, they've shown that oftentimes underrepresented minorities, particularly black Americans, are not approached to participate in clinical trials because it is assumed that maybe they would not want to. The same thing happens with older Americans. We see, particularly in cancer clinical trials, the patients who are seventy five and above are oftentimes infrequently included in cancer clinical trials. And oftentimes that is thought of because we as a clinical team, as a research team, presume that we know whether someone would want to participate or not. Well, oh, they're 75 years old. They've got a lot of other things going on. They don't want to be in clinical trials, so we're not even going to ask them in the first place. And that leads to inequities, both in terms of the representation of particular populations in the research that we have, and rightfully so, questions about whether new drugs that are coming out are applicable to particular populations that were not included in the clinical trials in the first place. But as we as we go there, I think what this is about is equitably assessing all patients and their caregivers for needs that relate to palliative care and supportive care principles. So that means taking all people regardless of creed or background or race or ethnicity or age, and saying we need to ask and obviously agnostic to the disease severity from an objective sense and say all of these folks through either patient reported outcomes or other sort of basic survey ways that we are assessing everyone for the same needs and then having systems in place do that, because I think ultimately we reach a democratization of this when everyone is assessed in a fair way, because at that point, then clinicians are not necessarily the gatekeepers to supportive care services. We let the needs guide what happens next. And importantly, I think if we also educate and engage patients and families about these services, just as you're asking me, what's the difference with hospice and palliative care? Well, it's not surprising to think that three quarters of people walking down the street today don't know the the answer to that question is important, because if they don't know the answer to that question, they also aren't able to advocate for themselves, to their clinicians and say, well, hey, Doc, I was thinking about palliative care. What do you think I could get involved in? And what we want to make sure is the health care system and clinicians don't say, oh, you're not sick enough for that. Right. Because that's not the right answer to that question. The right answer to that question is. Oh, I see that you've got this and this and this on your mind. I think palliative care would be a great extra layer of support to the care I'm already providing to help you manage those issues.

Hanh: 34:19

Mm hmm. Now, how does palliativ care focus on the needs of the caregivers?

Arif: 34:26

Yeah, I you know, this is this is one of those, I think, mom and apple pie moments when you think about value based care transformation that's happening to us and we're moving towards understanding, are we actually providing the right care to people that actually moves the dial in terms of what's important to them? As that's happening, we're starting to realize that caregivers are and often times unengaged by our own fault unengaged component of that decision making. So an example is, you know, in my practice, the majority of patients who come to the emergency room in the hospital, the patient's not the one who call nine one one, it's the caregiver. And we know good data from patients, for example, who have moderate to severe dementia. The caregivers are actually key to all the health care utilization that happens. And and, you know, health care utilization should be looked at as a negative from a cost perspective. I look at it as a negative from a patient experience perspective, because the reality is most people, particularly in the U.S. and the Western world, do not want to spend the precious time that they have, whatever that time is measured in months or years or decades in the hospital. And that's generally true. And so if we can keep people to where they want to be, that's really important. That's by engaging caregivers. And I think what we do in palliative care well, and what we hope that other parts of the health care system are starting to do as well is to invite that person to be part of the conversation so that we are actually facilitating a triangulated conversation in a clinic room, for example, where it's patient, caregiver, myself, and potentially the rest of my team. And we're sort of saying, well, how do you think things are going patient? And how do you think things are going caregiver? And importantly, also thinking about, for example, quality measures and process metrics that actually standardize an assessment of caregiver needs, which which there are examples of happening out there. But we haven't really routinized into health care. Right. If I pulled one hundred clinicians today and said, how many of you have a standardized process for asking every caregiver you meet about different areas of distress? I think it'd be a handful that would say that's possible or that's what they do. And so I think baking that in to all the care delivery we do by asking the caregiver is really important. I also think we have to think of, we have to get past the billing and fiduciary responsibility issues that oftentimes clinicians feel the pressure of. They say, well, this is my patient, their caregiver is, not my patient. So I feel uncomfortable getting involved in their in their issues, the caregivers issues. And as we get to value based design, it'll be less about my fiduciary responsibility is just to this person or this person, to this person. It's really holistic, actually holistic, not in terms of whole only whole person, but its whole community. Right. This person there, their loved ones and the people around them, because we recognized, for example, that when caregivers aren't involved for for whatever reason, uh, cancer. Let me give you an example. And I think in dementia, this is true as well, that patients have worse outcomes. Their compliance with medications goes down there. In fact, UCSF just published a study, I think, yesterday demonstrating that patients who are older Americans who are living home alone are more likely to use opioids and anxiolytics as a way, potentially as a coping mechanism for that social isolation. And so by recognizing that not only by paying attention to the caregivers, but also paying meticulous attention to the patients who do not have a caregiver. I think for me and I think for my palliative care colleagues, when we hear that there's a socially isolated older American who does not have a regular caregiver or even a trusted adult to speak with. That raises several red flags in my mind, not judgmental about them or the position that they're in. But it raises red flags about what we should be doing as a health care system, because we need to lean into that person. That person is at risk for a lot of different things. And so I think both the presence of and the absence of is important for us to recognize from the very beginning, I think should be part not only of the social history, but of all the way we think, talk about and approach the problems of a person that they're facing. And we should create systems within health care that that that are led by the health systems themselves that say we have a caregiver support program. And at Duke, for example, where I work, we have a fantastic caregiver support program for our patients with dementia, I think is one of the best in the world. And that kind of dedicated both skilled delivery but dedicated attention to I think we should apply to many, many other diseases for older Americans and have health systems and clinicians be part of the leadership to to deliver them.

Hanh: 38:59

Hmm. So why, this is the last question. I know I've asked you a lot. Yeah. So why is it so important for professionals to get involved in their community, to provide support for those in need, especially younger people who may feel overwhelmed by the illness they're caring for at home? Very common, especially during COVID.

Arif: 39:20

Absolutely. And I think it starts with the humility of recognizing that we can't know all the distress people are suffering from. By seeing them in one percent of their total lived experience. You know, if that that's that's the time they spend with us in the hospital or in the clinic. And so I think, you know what, Home-Based palliative care programs particularly do really well. But home health programs could do really well as being the eyes and ears hospice, as well is saying what what is this person's lived experience truly? Because, as I said, the caregiver, the environment, their home and so on becomes really, really important. I had a patient who was going through a very difficult divorce and was trying to explain to me how difficult this was in terms of getting cancer treatment while going through this. And what I needed to learn is what is life like at home? Because I had grandchildren who are living with her. And I needed to understand what's the best way for me to help her? And the way to do that was not only telehealth appointments, but actually home based appointments as well. And so as we made that work, we learned a lot about the tensions that she's facing and so on. And we could honestly tailor our services to being to being respectful and empathetic to that, because the thing is, patients aren't trying to be noncompliant. They're just distracted with a lot of other things, oftentimes. And we have to be aware, appreciate that to to actually create true patient centered care. And so I think, you know, with a move towards care in the home, hospital at home, homebased programs for many different things, I think we're going to see a decentralization of health care or actually health care is more in the community or we're going out there instead of them coming to us, which is the prevailing model right now. And I think if we look over the next five years, we'll see a health care system that I hope is one we can't recognize today, because it'll really be largely decentralized, distributed out there. And if you think about other sectors that have done that, policing has been a really good example of that, where policing became more community based and in many communities has been very successful in that way where they were out there amongst the folks. And I think for health care, we need to get there as well.

Hanh: 41:24

Great. Wow, thank you. So if people want to reach out to you, learn more about your work and support that, how do they do that?

Arif: 41:31

Yeah, well, I like to be on Twitter and have these conversations as well. So my Twitter handle is @arifkamalmd. You can find me there. And that's probably the best way to start a conversation with me. And you'll see a lot of people on#MedTwitter. The #hapc Hospice and Palliative Care is a good one to follow as well. You can start to see all the different people in the in the ecosystem that are talking about this, including patient advocates who are helping us shape how we think about the next generation in the field of palliative care. We're thinking about palliative 3.0. 1.0 was hospice 2.0 is how we're doing it now. And we're really at the cusp of thinking, what is that next generation, the delivery look like? And we need smart people, patients and caregivers, and others who are passionate about this to be part of this discussion. So I invite them to follow me on Twitter. And let's let's continue the conversation there.

Hanh: 42:22

Wow. Great. Well, thank you so for your time and your wisdom. I appreciate it so much.

Arif: 42:27

Great. Thank you for having me.

Hanh: 42:28

All right. Take care.