UTILIZING CLINICIAN PERSPECTIVES TO INFORM A PAYER-LED VIRTUAL PALLIATIVE CARE INTERVENTION AMONG MEDICARE ADVANTAGE BENEFICIARIES WITH ADVANCED ILLNESSES TAMAR KLAIMAN, PHD, MPH; JENNA STECKEL, MSW; CALEB HEARN, MPH; AMAYA DIANA, MPA; WILLIAM FERRELL, MPH; RAVI PARIKH, MD, MPP
UNIVERSITY OF PENNSYLVANIA
PAGE | 02
EXECUTIVE SUMMARY
Palliative care is specialized medical care for people living with a serious illness and is focused on providing relief from the symptoms and stress of that illness. The goal of palliative care is to improve quality of life for both the patient and the family, as it has the potential to improve symptoms, enable informed decisionmaking, and improve caregiver burden. Despite its potential, most Americans with serious illness do not receive specialty palliative care. This can be due to a lack of awareness among clinicians and patients; communication failures as clinicians are often uncomfortable initiating conversations regarding goals of care; geographic and financial barriers, particularly among rural populations; and a growing deficit of specialty palliative care clinicians across the US. Integration of virtual palliative elements can alleviate these issues, which is timely, as the COVID-19 pandemic has accelerated a rapid shift towards virtual care in recent years. Designing a virtual model to provide upstream access to palliative care services requires diverse clinical perspectives to inform the design and barriers to accessing virtual palliative care.With this goal in mind, our research team interviewed 23 clinicians from multiple specialties – including hematology/oncology and family medicine – to capture perspectives that could help design an effective virtual palliative care program. All interviews were transcribed and subsequently analyzed by researchers trained in qualitative methods. Respondents were overwhelmingly supportive of palliative care, and many supported additional services including physical therapy, mental health counseling, and symptom management would benefit their patients. That said, they often cited financial barriers to palliative care provision including insurance companies’ long approval wait times and low reimbursement, high cost to patients, the inability of clinics to pay palliative care specialists, and the comparatively low salaries clinicians make in the specialty.Specific to virtual palliative care, many respondents noted that it could expand access to palliative services for rural patients, offers the opportunity to engage with caregivers, and take advantage of existing infrastructure (depending on the health system). Barriers around virtual palliative care included concerns around reimbursement, patients’ ability to navigate telemedicine technology, and challenges with accessing medical records across institutions.Many respondents were supportive of virtual palliative care, but most felt that an initial in-person consultation was necessary. Respondents universally believed that more patients should have access to palliative care.
UNIVERSITY OF PENNSYLVANIA
PAGE | 03
ABSTRACT
Patients with serious illness have varied unmet needs, many of which palliative care could address, but access varies by geography and health system. Most clinician respondents felt that community-based palliative services including physical therapy, mental health counseling, and symptom management would benefit their patients. However, they had mixed feelings about automated referrals, with some clinicians feeling hesitant about not being alerted to such referrals. Many respondents were supportive of virtual palliative care, particularly for those who may have difficulty accessing physician offices, but most respondents felt that such care should only be provided after an initial in-person consultation where clinicians can meet face-to-face with patients. Respondents universally believed that more patients should have access to palliative care.
UNIVERSITY OF PENNSYLVANIA
PAGE | 04
BACKGROUND
Palliative care is a medical specialty focused on providing patients with relief from the symptoms, pain, and stress of a serious illness. Early specialty palliative care can improve patient symptoms and quality of life, enable informed decision-making, and improve caregiver burden and quality of life.1–3 Palliative care interventions also have the potential to lower end-of-life spending for patients living with serious illness by preempting costly hospitalization and ED visits.4–6 Despite this promise, most Americans with serious illness do not receive specialty palliative care.7 Some access issues arise from a lack of awareness: inadequate clinician and patient understanding of palliative care options or equating palliative care with hospice can inhibit patient uptake of palliative services.8,9 Simple communication failures can further impact access, as primary clinicians are often uncomfortable initiating conversations regarding goals of care or fail to recognize the palliative care needs of their patients.8–10 While communication barriers could be addressed through training, access to palliative care services remains difficult for many of the more than 40 million Americans living with serious illness. Geography and financial barriers pose issues for access, particularly in rural communities.11,12 A growing deficit of specialty palliative care clinicians will only make it more difficult to meet the projected palliative need of the country.13,14 Incorporating virtual elements into early palliative care offerings can alleviate access issues for patients in need. Professional organizations and clinical guidelines are increasingly recognizing virtual care as a valid strategy to bring palliative care into underserved areas.11 Virtual care could also allow for earlier provision of certain palliative care services, such as advanced care planning and caregiver education and support. Although studies on virtual palliative programs are limited, more research is currently being done on the effectiveness of virtual palliative care options.15 Some early studies have had promising results: home-based palliative care programs utilizing telehealth services have been successful in reducing hospital admissions, increasing hospice utilization, and increasing length of hospice stay.16 Integration of virtual palliative options has also been met with positivity by patients, caregivers, and clinicians for how telehealth has allowed access to clinicians, quick responses, and improved efficiency and quality of care.17 The COVID-19 pandemic caused a rapid shift towards virtual care, including an acceleration of virtual palliative care use.18 Building a successful virtual palliative care model to provide upstream access to palliative care requires understanding clinician and hospice clinician perspectives on (1) the design of virtual palliative care interfaces, and (2) barriers to accessing virtual palliative care. We solicited perspectives that could help design an effective virtual palliative care program from 23 clinicians across multiple specialties.
UNIVERSITY OF PENNSYLVANIA
PAGE | 05
METHODS Study Design This study had two key goals:
01
1.Solicit perspectives from clinicians or administrators involved in caring for patients with advanced illness on barriers to palliative care delivery in current practice and appropriate eligibility and intervention components for virtual and hospice-provided palliative care
02
1.Solicit perspectives from hospice care clinicians and administrators on barriers to upstream palliative care delivery and necessary components of community-based palliative care upstream of hospice
This was a multi-site qualitative study. We contacted participants and invited them to share their experiences with us via a semi-structured interview. The goal of these interviews was to understand practices around supportive care for patients with advanced illness who could benefit from additional services, but who are not eligible for hospice care. The research team at UPenn (Dr. Klaiman, Dr. Parikh, and Mr. Ferrell) developed a draft interview guide. Multiple meetings with the funder (Humana) for additional input and approval followed this. The interview guide (see Palliative LIGHT Interview Script) targeted clinicians who treat patients with advanced illness and includes questions focused on the “light touch” palliative care program. This guide included questions separated into two main sections: 1) Program Elements and 2) Virtual Palliative Care.
PAGE | 06
UNIVERSITY OF PENNSYLVANIA
SAMPLE AND RECRUITMENT Initially, a roster was created with the IQVIA dataset (accessible via the Wharton Research Data Services (WRDS) at UPenn. IQVIA is a telephone-verified database of office-based US physicians. The database collects demographic and practice-level information, including data regarding practice, health system, hospital, and group practice affiliation, organized by National Provider Identifier number. This database is updated semiannually and is a nearly complete sample of all office-based US physicians. The IQVIA dataset has similar numbers of physicians as the American Medical Association (AMA) Physician Masterfile and the American Community Survey dataset and contains accurate address and specialty information. This list included 237,656 clinician names. We separated these into 27,619 cardiologists, 15,445 oncologists, and 184,614 PCPs, excluding nephrologists. We further limited our sample to those in the Value-Based Insurance Design Hospice (VBID) market states: Ohio, Wisconsin, Colorado, Georgia, Virginia, and Kentucky, selecting for PCPs who saw 100300 patients and cardiologists and oncologists who saw 50-300 patients. We oversampled cardiologists and oncologists because they are less likely to respond to interview requests and we want to make sure to gather a representative sample of them.
Medical Marketing Service (MMS) was able to match 4035 of the 4744 NPI numbers we requested with the AMA database. We narrowed down the matches MMS had to specialties that see a high proportion of seriously ill patients in the states of OH, WI, CO, GA, VA, and KY. This limited our contacts list to a total of 2,825. We excluded pulmonary critical care doctors from our sample because we couldn’t determine which worked in ICUs and which were in outpatient settings. We excluded nephrologists from our sample because Medicare Advantage does not cover end-stage renal disease. Recruitment emails were sent every few weeks for a total of five sends. Of the 2,825 emails that were sent, only two individuals responded to participate in interviews. We then undertook a literature review to identify clinician listservs with high response rates to research participation requests. This search yielded the Colorado Academy of Family Physicians listserv. This list consists of approximately 2500 subscribers, with the approximate breakdown as follows: 1800 physicians, 300 residents, and 430 students. These subscribers are either currently working in or training to work within the family medicine specialty. We sent one email to this listserv. Of the approximately 2,500 emails that were sent, 7 individuals responded to participate in interviews. A method of purposive sampling was subsequently undertaken as the research team utilized an additional professional organization listserv, snowball sampling, and the Principal Investigator’s (R.P.) professional contacts to add representation from the fields of cardiology, family medicine, psychology, and geriatrics. Recruitment continued until thematic saturation was reached.
PAGE | 07
UNIVERSITY OF PENNSYLVANIA
DATA COLLECTION AND ANALYSIS Interviews were conducted by phone (J.S.) and took approximately 30 minutes to one hour to complete. Participants were offered a $150 gift card for their participation in an interview. Verbal consent was obtained from each clinician who participated in the semi-structured interviews. See Palliative LIGHT Interview Script for the template for verbal consent. Written consent was not necessary for this project because clinicians were not required to participate and could opt out at any point. No patient-identifying information was provided to clinicians. All interviews were recorded and professionally transcribed. In addition to interview questions, we collected basic demographic information including respondents’ age, race, gender, practice type, market, and the number of years in practice. Data were entered into Atlas.ti version 22.1.5.0. A codebook was developed that included a priori themes as well as themes that emerged from the interview data. All interviews were coded by at least two research staff members (TK, CH, JS). The focus of this project was to capture perspectives that could help design an effective palliative care intervention program. The researchers did not conduct consensus coding during the coding process, as disagreements were welcome to ensure multiple perspectives were captured. Once all data were coded, theme sheets were developed to review each of the identified themes and corresponding data. All researchers reviewed the theme sheets and came to a consensus on exemplary quotes that reflect the identified themes.
PAGE | 08
UNIVERSITY OF PENNSYLVANIA
RESULTS We interviewed 23 participants (see Table 1 for specialty breakdown). Respondents had varied patient panels depending on their specialty, where they were located, and the local population. Participants included those who practice in rural, urban, and suburban areas across the country. Respondents also represented various specialties including hospitalists, oncologists, and family medicine. Respondents ranged in age from 33 to 67. Four identified as Asian or Indian, one as Black and Asian, two as Black, and fifteen as white or Caucasian. One identified as Hispanic or Latinx. Fifteen identified their gender as male, and six as female. Demographic information was not provided by two respondents, seven did not give their age, and one did not give their years in practice.
Table 1: Participant Characteristics
PAGE | 09
UNIVERSITY OF PENNSYLVANIA
PALLIATIVE CARE SERVICES WOULD BENEFIT MOST PATIENTS Respondents were overwhelmingly supportive of palliative care services. They described patient needs for spiritual care, nutrition support, support with activities of daily living, transportation, socialization/group support, physical therapy, mental health, social work, home visits, advanced care planning, remote/on-call support, symptom management/pain control, economic/financial support, massage, durable medical equipment, pharmacists, ethicists, legal services, hospice referral and transition, alternative medicine, occupational therapy, speech therapy, music therapy, companionship, and patient advocacy.
"
Well, so what are the – what else besides the expertise – the expertise that you can provide as a clinician, what else? What if I need something else? Are they available? Let’s say, hey, if today let’s say how sick I am, I just need to really talk with a priest or pastor or chaplain, or
today, the way my need is, I need somebody to help me with my grocery shopping because I’m so short of breath I can’t go out. Or I’m in a lot of pain today. I can’t go out. But I’m hungry. So, do you have – do you have somebody if I have that need? Do you have somebody that can help me? Let’s say it could be because my family’s out of town, or I’m alone. So, do you have that resource available to really help me really get back on track? (003) I mean, again, if we want to really put a little bit of emphasis on the social part of it, one thing that would be nice is find a way to help patient with some of the activities they do on a day-to-day basis. Some of them may be sick enough they can’t go to the store. They can’t go grocery shopping. Some of them may not be able to really get their apartment or houses taken care of. And a lot of time, we see there’s a patient who live alone, and they don’t have the ability to go. So, if there’s a service that could provide them with the ability to get their groceries, which is important, get their meals – not necessarily cook every day, but at least get this arranged, medication delivery, and also a home health aide that would help them with bathing and taking care of the house. And these are things that may really, again, help, especially those who are involved in our homebound palliative care. Those who are able to go out, they don’t have transportation, developing, for example, a transportation – a way to transport them to and from their appointment would be nice. And if those patients can really get out, sometimes the gathering, assuming that there’s no restriction as far as COVID, gathering for these patient where they could expose to other patient who are in situation like this for them I think is a little social activities that could – that certainly could help, even if they – this is traditionally linked to that, but certainly it’s a thing that could help and have them understand the situation that they’re in. (003)
PAGE | 10
UNIVERSITY OF PENNSYLVANIA
The most cited barrier to providing palliative care was the lack of availability.
"
See, unfortunately, that question I cannot answer because we don't have any good palliative care specialist in the local area.Patient cannot travel 100 miles to go to palliative care specialists. It's not practical. (009)
I think it would potentially give more patients access to the service. But candidly, that is not a viable option right now because the number of palliative care physicians and advanced practice providers are more limited, that it only really makes sense – they really only have capacity to see the patients that we are directly referring. And so I think if you referred everyone, you would refer some people that didn’t necessarily need it, and we don’t have the capacity to manage that. If you refer only those who are referred by the oncologist, you probably are missing some, but we don’t have a way to manage that well right now (010)
"
Clinicians also saw financial barriers to palliative care provision. This included insurance companies’ long approval wait times and low reimbursement, high cost to patients, the inability of clinics to pay palliative care specialists, and the comparatively low salaries clinicians make in the specialty.
It would be nice if it was covered more often, if there was more of a relationship and a
"
rapport that could be established than just once a month. It would be nice if the palliative
care group could actually do stuff more than just talk.If they had an actual role in palliative than palliation in palliative care, in terms of making suggestions. (018) Then the biggest one is the insurance, what does the medical insurance the patient has
which allows them to get all the supportive care. Sometimes the insurance – like you talked about it before also, the insurance won't cover all those expenses. (021) Because you go into this field, and you make $100.You go into another field you make $50, many times that makes the decision kind of thing because the kid who has gone to medical school or worked very, very hard in his or her life. And in her life or his life, he worked all life and then they look at what are the renumeration or how much is the student debt nowadays creating. Sometimes the $500,000 or more. It's not the reality of life. … Everything adds up.
"
Everything adds up. (009)
Other barriers to palliative care that respondents mentioned included a lack of awareness of what palliative care is, lack of communication and coordination between palliative care and other clinicians, and difficulty of patients getting to another doctor’s appointment.
PAGE | 11
UNIVERSITY OF PENNSYLVANIA
ACCESS TO PALLIATIVE CARE VARIES BY GEOGRAPHY AND HEALTH SYSTEM The availability of palliative care providers is variable across health systems and regions affecting clinicians’ ability to refer patients to potentially beneficial services.
"
Well, the top unmet need is access. It’s very hard to find a palliative care doctor. And if you do have one, they’re stretched thin.You can’t see them every day. I have a palliative care
practice, but sometimes it takes a week or two to set up a visit with someone, just because I don’t have slots. The other thing is a lot of palliative care is not available 24/7. So, hospice
has a 24/7 nurse line. And a lot of palliative care teams, if you don’t catch them during office hours, you’re not gonna catch them at all…(001) There are not enough palliative care teams available around the country. And I'm practicing in a small town where usually the new things take a while to come. (009)
"
Respondents felt that palliative care should be offered in clinic, at home, and outpatient as much as possible to tend to appropriately meet individual patient needs. Health system resource availability and patient needs should dictate the appropriateness of the palliative care setting for patients
I think it should be available freestanding things which are willing to go to home, and they
"
can on their own, see the patient.They can be in a cancer care center, or they can be outside cancer centers. But they should be available, it would be a nice even in a cancer center, but
those cancer centers are more expensive to make the building and support and everything. (009) … If your question is that, is there a frequent and – are there palliative care sources out in the community independent like outpatient palliative care clinics, I would say no. When we reach that point, we have to refer the patient to the tertiary hospitals who have their satellite clinics. And it’s like a specialty care where you refer the patient to the specialty care clinic. Which is normally – which is usually attached to a big organization, a tertiary hospital or a multi-specialty private practice group. (021) We try to – Home Health which is as good as – is kind of our main option that we can refer to or else family, or else they gotta be in a facility somewhere. We help the best we can, but often it becomes an insurance issue for the patient and what their family can do. So it’s a big gap. (012)
PAGE | 12
UNIVERSITY OF PENNSYLVANIA
In my area now, we have robust ability for patients to receive palliative care because in my practice we have employed – in my private practice, they’ve employed palliative care providers and advanced practice providers that support their practice. They see patients in person in a clinic, and they also see patients virtually, which allows us to have a geographic footprint even when we don’t have a palliative care specialist in any given market. (010)
"
PAGE | 13
UNIVERSITY OF PENNSYLVANIA
VIRTUAL PALLIATIVE CARE: FACILITATORS AND BARRIERS Many respondents implemented virtual palliative care during the COVID pandemic, so the infrastructure to implement virtual care is already in place.
So we started a telemedicine program probably about a year before COVID, and then obviously with COVID, we were able to expand that. Initially, it was just for consenting
"
patients for clinical trial, because you really couldn’t see patients and get paid to do that. But COVID changed that, thankfully… (022)
Oh, yes, especially during the pandemic. Many folks, even before the pandemic, there was phone-based palliative care. I don’t know what the team is doing with video-based palliative care right now. Of course, the XXX system, like many systems, went totally virtual care through the early stages of the pandemic. (014)
"
Respondents felt that virtual care could be useful for providing services that had limited availability in their geographic area or for patients who may have to travel far for a visit or for visits that do not require a physical exam.
"
We have couple of genetic counselor. They are outside an area. Okay, but they're providing the care to the patient and patients really love it. Because nowadays, you can send the information by mail, a patient needs this, this, this, this. That can be provided, patient can have more questions and answers and things get done and patients are very, very happy. (009) So in a situation where it was just a followup and we weren’t giving any chemotherapy and
we were just checking in and seeing how the patient was doing, making sure that they were okay and just did a telemedicine visit, rather than having them come all the way back into clinic. (002) It can be a great way to do follow-up visits, especially for rural patients or patients that have severe transportation issues, patients that live three hours away from the clinic, we can go in and do a follow up. We still usually require them to come in and do a face-to-face intake just so that they can have a 360-degree multimodal team assessment of that, including things like walking and movements and all of that. So it – I guess it depends a little bit on the patient and what stage of care they’re doing with our team, but follow-up visits can certainly happen while they’re in tele. (020)
PAGE | 14
UNIVERSITY OF PENNSYLVANIA
I think assessing all sorts of things about the patient – pain level, what they’re – how they’re able to – all their facility with activities of daily living, have they – you can ask them direct questions, you know, have you eaten today, have you taken your medication today, did you take the walk that we talked about, did you – so yeah. I mean I think there’s so many things that can be assessed.And, of course, the mental health side of it, as well. (016) Check-ins. Some check-ins when people are in a stable place. If it’s been no change for a while, then I think it’s fine, just having someone to talk to and check in with. I think people, after they’ve been in the hospital and they’re home, I would prefer in-person, and laying eyes on someone, and going over medications or tactics or what they’re doing, or the care that
"
they’re giving themselves (018)
Virtual palliative care also offers opportunities for the family to participate in patient care.
"
One is the ease for people who have difficulty getting out of the home and the other is just allowing multiple family members to log in and be part of a discussion when you’re really trying to create a family-based home care plan. (008) I think in terms of conversations and counseling patients and caregivers, virtual palliative
"
care could be very helpful and I think it may help with the shortage of providers. (002)
However, many respondents felt that palliative care should be initiated in person.
"
I think if it was the only option, then I think as soon as you’re gonna consider palliative care,
then virtual care would be the way to go. I think if face-to-face care is available, then I would prefer that over virtual care. But if the time came when – I don’t know – the patient was
homebound and nobody could get to them, or something, or the patient was sick and was causing risk to someone coming into their home, then, yeah, virtual care could be a decent option. (013) The – as I said, I would – I’m always – I would always prefer that this situation be – at least the initial visit be a face-to-face, or at least there’s some discussion face to face, eye to eye, about the initiation of this because I think it’s very, very important… So, I think for such an important stage of health, I think the first visit should be face to face. (003)
PAGE | 15
UNIVERSITY OF PENNSYLVANIA
I think that’s perfectly fine with that if there’s an established, initial, face-to-face by the palliative care team and have met with the patient and family. I really don’t see how it can be effective for a first time and ongoing. But I think once the individual from the palliative care team has met with the patient and family in person, then they can determine along with the patient the virtual visit modalities in terms of follow up. (004) I think the initial palliative care assessment should be in person and then both the patient and family and palliative care individual can decide what they’re comfortable with, but the most successful palliative care settings à la hospice is where the patient, family know and see on a fairly regular basis the individual. So it doesn’t become too cold. The problem with virtual visit, virtual care it becomes sort of a colder way of interacting. (004) Ideally, for me, the first visit, if possible, would be in-person. Especially if it’s a touchy time of patients’ lives, it’s just so difficult to do that virtually. And then, I think, sometime after that, when there is sufficient rapport established. It might be that for some patients and family members, sufficient rapport can be established after the first visit, to bring up the topic of virtual palliative care for some aspects. For other patients, it might take three and four inperson visits to build that level of rapport and trust.So, I would be wary about introducing it too early, before those areas of trust and rapport are sufficiently established. (014) I think the initial appointment should be face to face. But I think follow-up appointments if there’s – you know, follow-up appointments when you’re checking in, having ongoing discussions about their health, seeing if they have adequate pain control, seeing if they have any questions, those are the type of things I think would be very useful to do virtually. (015)
"
While some respondents were supportive of the use of virtual care, others identified barriers to its use in palliative care including concerns about reimbursement, the need for patients to be able to navigate the technology, the need for a physical exam, and challenges with accessing medical records across institutions.
It has to be from a palliative care side, it would have to be funded. It would have to be
"
reimbursed well. It would have to be recognized as valuable. It would have to have support. (001) Yeah, I think, in general, we’re still struggling with figuring out if tele-visits are going to get reimbursed in the same way that in-person visits are, and even if you can do a lot more of
them in a certain period of time, it may not be worthwhile. And so, I think a lot of institutions are not – are trying to move away from tele-visits. (017)
PAGE | 16
UNIVERSITY OF PENNSYLVANIA
They'd have to know how to use the software on their phone or computer. Sometimes that can be a challenge. (007) In oncology, where sometimes patients have a lymph node that’s swollen or they’re short of breath or the cancer is in the liver, you want to be able to examine the liver and determine if the cancer is responding or not. So it’s hard just on a telehealth …although I am oldfashioned. I’m a baby boomer, okay, so sometimes I listen to someone’s heart and I hear something that no one else had heard and they need to see a cardiologist. So I’m always concerned if there’s too much telehealth you may miss something with it. (004) I think the – that would require the availability of medical records, and again, the ability to see it, know exactly what would happen, what was happening to that patient, and what has been tried, what worked, what didn’t work, and the expectations. I think in all, it would be okay as long as there are enough information to be available for the receiving physician. (003)
"
PAGE | 17
UNIVERSITY OF PENNSYLVANIA
AUTOMATIC REFERRALS Respondents had mostly positive feelings about automatic palliative care referrals through the form of an EHR nudge based on clinically valid criteria citing potential utilization increases and clinician referral bias reduction.
Well, I think there’s certainly data out there that shows that patients who are referred to
"
palliative care early actually live longer and have better quality of life. So I think if you could increase the amount of referrals that would be helpful to those patients. (022) Well, it takes out the bias of the potential referrer that somebody is ready or not ready. If they’re just basic criteria, it’s offered. The patient can say no. The patient can say I’m not
ready. So it takes out the bias. It makes it easier, less work for the provider and it potentially picks up people who might benefit but would otherwise be missed if it were left up to a decision or somebody who happened to have extra time to do that work that day. (008)
"
Some respondents also only felt comfortable with auto referrals if they were from clinicians.
"
In general, I don’t have an issue with that. Ideally, in my mind, it would come from the PCP, who knows the patient the best. Or, if the patient has a regular specialist, the cardiologist,
for example, who the patient has been working with a long time, and the cardiologist says,
you know what? I think it’s time. I wouldn’t have an issue with the specialist doing that… (014) Yeah, I mean, since I’m kind of a control freak I would kinda have a problem with that. I mean, I wouldn’t care if my nurse said, if – I’m thinking this guy – this person needs to go to palliative care, or I roomed them and he got really, really, really short of breath walking from the waiting room to the room, and I think palliative care would be a good idea, do you mind if I call them? I mean, I’d be like, sure. I mean, I – that part of it, I don’t have a problem… I mean, I could – that – I kinda – I’m just enough of a control freak that I wanna know what’s going on with my patient. I wouldn’t have a problem with a pharmacist calling me and saying, I – your person came in to pick up their meds and they barely were able to walk back to the counter because they were short of breath, or they were having so much pain, and all this, and what do you – have you considered the palliative care, do you mind if I call palliative care, and that – I’m totally a team player that way, but I’m also – I don’t like when things happen out of my control because sometimes, if you don’t know about it, you’re making decisions based on – and not aware of the whole picture, the whole patient picture. So, I mean, as long as I know about it and I’m asked about it, I probably wouldn’t have a problem. But I would not be in favor of just independent referrals outside of my control, outside of my knowledge, I guess. (019)
PAGE | 18
UNIVERSITY OF PENNSYLVANIA
Responses were mixed regarding the optimal nudge strategy toward opt-in vs opt-out nudges.
"
Yeah. So, that’s why I wanted to differentiate. I think machine learning algorithms to suggest would be fabulous because many times busy clinicians just don’t think of this stuff. I would be reluctant for the algorithm to automatically do it, but I would think it would be a tremendous, from my frame of reference, for the algorithm to either put it together with notes that’s saying to the PCP, says, that based upon our algorithm, Mr. Jones might be a
candidate for palliative care, here’s why. So, explain the decision support a little bit, and then leave it up to the PCP to make that referral. (014) I think I would probably prefer – I guess opt out. It’s less work for the majority of patients
"
probably who need it. So, yeah, I think that’s fine. (002)
Respondents who viewed automatic referrals negatively were concerned about the reduction of physician oversight, patient confusion, and workforce overload. There was also a common lack of trust in machine learning among these responses.
"
[Automated notification] sort of takes away the personal care touch in medicine, which never or should never go away. I can understand where in a very remote areas where palliative
care entity may have 30 clients and they’re 20 miles apart from each other, where it has to be done. But where geographically it’s relatively easy to get to someone, I don’t see that
happening. And the concern I have about automated is I suspect there will be someone who develops the program that leads to, oh, this person is a candidate for palliative care. I think without checking with the physician for certain nuances in the patient it’s gonna lead to potential conflicts. (004) Well, if it’s another provider who is a part of the care team, I don't know, an internist or a cardiologist or a heart failure specialist or whoever, you know, I don't see any problem. If it is an automated referral based on data in the chart or whatever, then I don't subscribe to that idea too much. Like an artificial intelligence, oh this guy should have palliative care, create a referral automatically in an automated phone call to the patient, I don't like that idea too much. (011) I don’t know. I think I’m okay with it. It just feels like it’s gonna be a lot more work, because then I have to actually – I would have to put in the referral. That would be the recommendation, but then I would have to look at each person, see who they are, see if they want it, run it by them. People get annoyed if somebody contacts them and says, oh, you were just referred to palliative care, without them having a say-so, and without me notifying them. (018)
PAGE | 19
UNIVERSITY OF PENNSYLVANIA
REFERRALS TO PALLIATIVE CARE OUTSIDE CLINICIAN ORGANIZATION Respondents want to know about major events that happen in external palliative care and how they can support those functions with the primary care they provide.
"
Yeah, I’d want to know how and what preferences the patient and the family have for level of care, aggressiveness of care. Are they still wanting full-court press? Are they getting tired?
Are they questioning their treatment? Are they questioning their approach? Do they still feel good about where they’re going? Do they need more information? What’s troubling them? What, if anything, is making them unhappy or worried? And then anything specific about services or treatment added, change in pain medications, change in support, such as the addition of physical therapy or a nutrition consultation and what did that show and then an update on symptom management, both the physician’s assessment and patient-reported outcomes. Nausea is well-controlled, it’s not well-controlled, having trouble eating, not
"
having trouble eating, those sorts of things (008)
Respondents view integrated EHR access as essential to coordinated care between themselves and external palliative care clinicians.
"
Privacy and whatever was required to vet quality.There are constraints and rules about who can see your medical record, qualifying people for being part of a hospital’s or an organization’s medical staff. I think that there’s a lot that has to happen to vet an outside
organization and to get them access to the medical record and integrate them. An external third party, disconnected provider isn’t so easy, even for a traditional medical specialty. A cardiologist who doesn’t work with you who’s got the EKGs in their office, but you can’t see them. That’s not so easy.. (008)
So number one, I think whatever that’s non-VA provider providing healthcare to VA patients. If they could, they should have remote access. They should be granted access as I don't know how they would do it to justify. But since they’re part of the care team of an outside organization, they should have direct access to the VA medical records. They should act as CPRS, the Epic equivalent for the VA. They should not have to rely on some secretary at the VA to scan thousands of pages to you, you know? They should be able to directly access that. And that can be done remotely. So that’s the primary, by far, most important thing. And then other than that, yeah. If you streamline referral, if you create even automated referral, that’ll make everything easy. But I think, as I said, the bigger challenge is not referring somebody from the VA to the outside world. The biggest challenge is that person in the outside world to understand why they’re coming and have a comprehensive understanding as what their medical problem is. (011)
PAGE | 20
UNIVERSITY OF PENNSYLVANIA
Respondents tended to view external palliative care as appropriate but secondarily preferential to internal palliative care when resources allow.
"
So big academic institutions and cancer centers will have a dedicated palliative team. Some of the community hospitals will not have a palliative care team. I would say mid-level community hospitals may have. So there is a big lack of access to those specialties in the
hospital, apart from the big, urban academic centers. I: So if a specialist would be trained in palliative care, are you suggesting depending on what location you’re in, you might not have an option of having specialists? R: Yes.Yes. (005) I think that a lot of physicians, they do medical interventions, but beyond that, don’t necessarily have a ton of training in caring for families and families of patients when there’s no longer medical interventions available. So, I think that can be a burden to physicians, because they don’t necessarily know where to go to next without involving palliative care or hospice.(013)
"
PAGE | 21
UNIVERSITY OF PENNSYLVANIA
DISCUSSION Respondents advocated for a wide range of palliative care services for patients with serious illness but acknowledged a variety of barriers can inhibit access. Availability was a commonly cited issue, with many clinicians struggling to refer patients to palliative services due to the varying availability of palliative clinicians across health systems. With a future influx of palliative clinicians to these areas unlikely in the near term,13,14 establishing virtual palliative options could be a promising way to improve access, particularly for rural patients or patients with transportation issues.19 Another commonly stated benefit of virtual palliative care offerings was increased ease of family involvement. Barriers such as communication and awareness issues could be addressed in conjunction with any new model via educational information sheets or videos.20 Reimbursement concerns would need to be addressed as well, with participating clinicians reassured that they would be adequately reimbursed for virtual care. Many respondents were supportive of virtual palliative options for patients but expressed reservations about a fully virtual model. Especially after the COVID-19 pandemic, respondents have the infrastructure for virtual visits and felt that virtual care could be useful for providing services that were limited in their geographic area, or for involving family members in a patient’s care planning. But respondents also stressed the importance of certain aspects of an initial in-person visit, such as the ability to look someone in the eye or provide a comforting touch. In their opinion, building a relationship with the patient and first discussing sensitive topics around palliative care would benefit from not having the divide a screen creates. For this reason, any virtual model should consider an initial non-virtual visit. It should be acknowledged that a model that puts patients onto a pathway to virtual care rather than being fully virtual from the start may still face workforce constraints limiting palliative care access. Respondents described a sweeping set of patient needs that could be addressed through palliative care programs, including spiritual care, nutrition support, transportation, physical therapy, mental health, social work, and music therapy, to name a few. Some of these needs (e.g., mental health visits) could be better met through virtual visits than others (e.g., physical therapy). However, for those services that could feasibly be done remotely, virtual visits may improve access.19 Palliative models should recognize the wide range of needs facing patients with serious illnesses and include services beyond a dedicated palliative care clinician. Clinicians had mixed feelings about automatic referrals, with some clinicians feeling hesitant about not being alerted to such referrals. Clinicians were concerned about a lack of physician oversight and wanted to be aware of how they could support any major events happening in external palliative care. Responses show the need for communication if instituting an automatic referral mechanism to keep physicians feeling in control of their patients. Hesitant respondents were more comfortable with automatic referrals if offered an opt-out option. Along with winning over clinicians, responses suggested infrastructure challenges that would need to be addressed for successful models using an automatic referral, including EHR integration. Our findings are similar to other mixed-methods evaluations of virtual palliative care conducted during the COVID-19 pandemic, which found providers to support blended models of palliative care provision.21,22 Another study reported similar strengths and weaknesses of virtual care, namely that it was easier to incorporate families, access was improved, and efficiency was up, but that the loss of human connection and physical touch was a major challenge.23 Our study is one of the first to study external agencies providing palliative care. It is also one of the first to interview respondents on virtual palliative care post the most restrictive parts of the COVID-19 pandemic, and to focus on a United States study population.
PAGE | 22
UNIVERSITY OF PENNSYLVANIA
Together, responses from the clinicians interviewed showed that clinicians understood the need for palliative services for their patients and were aware of numerous barriers to access, including availability. Respondent openness to virtual palliative services and automatic referrals indicates an awareness of the importance of palliative services and the need to experiment to improve access for their patients. At the same time, clinician hesitance around these same topics underscores the need for communication and collaboration in developing and rolling out any new palliative care model.
PAGE | 23
UNIVERSITY OF PENNSYLVANIA
LIMITATIONS The sample of respondents only included those who were willing to participate in the study, and participants were identified through snowball sampling and reliance on professional associations and networks. The opinions reflected may not represent all opinions on palliative care among this clinician population. Additionally, there was a paucity of participants from diverse racial and ethnic backgrounds, and some perspectives may not have been included due to the homogeneity of the respondents. However, the sample did include varied clinical specialties and respondents from across the United States representing varied geographic and clinical perspectives.
UNIVERSITY OF PENNSYLVANIA
PAGE | 24
CONCLUSION
Patient access remains limited for palliative care services, despite the high need among the large population of those with serious illness. Offering certain palliative care services early and virtually could improve outcomes and address access issues. Clinicians are supportive of palliative care services and open to virtual palliative care but feel that such care should only be provided after an initial in-person consultation. Any model should take these feelings into account, along with clinician hesitance around automatic referrals. Prioritizing communication and collaboration when implementing an upstream virtual model can help gain clinician support.
PAGE | 25
UNIVERSITY OF PENNSYLVANIA
REFERENCES 1.
Davis MP, Temel JS, Balboni T, Glare P. A review of the trials which examine early integration of
outpatient and home palliative care for patients with serious illnesses. Ann Palliat Med. 2015;4(3). doi:10.3978/j.issn.2224-5820.2015.04.04 2.
Alam S, Hannon B, Zimmermann C. Palliative Care for Family Caregivers. J Clin Oncol. 2020;38(9):926-
936. doi:10.1200/JCO.19.00018 3.
Noble H, Brazil K, Burns A, et al. Clinician views of patient decisional conflict when deciding between
dialysis and conservative management: Qualitative findings from the PAlliative Care in chronic Kidney diSease (PACKS) study. Palliat Med. 2017;31(10):921-931. doi:10.1177/0269216317704625 4.
Brian Cassel J, Kerr KM, McClish DK, et al. Effect of a Home‐Based Palliative Care Program on
Healthcare Use and Costs. J Am Geriatr Soc. 2016;64(11):2288-2295. doi:10.1111/jgs.14354 5.
Brumley RD, Enguidanos S, Cherin DA. Effectiveness of a Home-Based Palliative Care Program for End-
of-Life. J Palliat Med. 2003;6(5):715-724. doi:10.1089/109662103322515220 6.
Ciemins EL, Stuart B, Gerber R, Newman J, Bauman M. An Evaluation of the Advanced Illness
Management (AIM) Program: Increasing Hospice Utilization in the San Francisco Bay Area. J Palliat Med. 2006;9(6):1401-1411. doi:10.1089/jpm.2006.9.1401 7.
Meier DE, Back AL, Berman A, Block SD, Corrigan JM, Morrison RS. A National Strategy For Palliative
Care. Health Aff (Millwood). 2017;36(7):1265-1273. doi:10.1377/hlthaff.2017.0164 8.
Cai Y, Lalani N. Examining Barriers and Facilitators to Palliative Care Access in Rural Areas: A Scoping
Review. Am J Hosp Palliat Med. 2022;39(1):123-130. doi:10.1177/10499091211011145 9.
Aldridge MD, Hasselaar J, Garralda E, et al. Education, implementation, and policy barriers to greater
integration of palliative care: A literature review. Palliat Med. 2016;30(3):224-239. doi:10.1177/0269216315606645 10.
Feeg VD, Elebiary H. Exploratory study on end-of-life issues: Barriers to palliative care and advance
directives. Am J Hosp Palliat Med. 2005;22(2):119-124. doi:10.1177/104990910502200207 11.
National Cancer Policy Forum, Board on Health Care Services, Health and Medicine Division, National
Academies of Sciences, Engineering, and Medicine. Cancer Care in Low-Resource Areas: Cancer Treatment, Palliative Care, and Survivorship Care: Proceedings of a Workshop. (Balogh E, Patlak M, Nass SJ, eds.). National Academies Press; 2017:24743. doi:10.17226/24743 12.
Lynch S. Hospice and Palliative Care Access Issues in Rural Areas. Am J Hosp Palliat Med.
2013;30(2):172-177. doi:10.1177/1049909112444592 13.
Kamal AH, Wolf SP, Troy J, et al. Policy Changes Key To Promoting Sustainability And Growth Of The
Specialty Palliative Care Workforce. Health Aff (Millwood). 2019;38(6):910-918. doi:10.1377/hlthaff.2019.00018 14.
Lupu D, Quigley L, Mehfoud N, Salsberg ES. The Growing Demand for Hospice and Palliative Medicine
Physicians: Will the Supply Keep Up? J Pain Symptom Manage. 2018;55(4):1216-1223. doi:10.1016/j.jpainsymman.2018.01.011 15.
Allen Watts K, Malone E, Dionne‐Odom JN, et al. Can you hear me now?: Improving palliative care
access through telehealth. Res Nurs Health. 2021;44(1):226-237. doi:10.1002/nur.22105 16.
Lustbader D, Mudra M, Romano C, et al. The Impact of a Home-Based Palliative Care Program in an
Accountable Care Organization. J Palliat Med. 2017;20(1):23-28. doi:10.1089/jpm.2016.0265
PAGE | 26
UNIVERSITY OF PENNSYLVANIA
REFERENCES 17.
Bonsignore L, Bloom N, Steinhauser K, et al. Evaluating the Feasibility and Acceptability of a Telehealth
Program in a Rural Palliative Care Population: TapCloud for Palliative Care. J Pain Symptom Manage. 2018;56(1):7-14. doi:10.1016/j.jpainsymman.2018.03.013 18.
Cherniwchan HR. Harnessing New and Existing Virtual Platforms to Meet the Demand for Increased
Inpatient Palliative Care Services During the COVID-19 Pandemic: A 5 Key Themes Literature Review of the Characteristics and Barriers of These Evolving Technologies. Am J Hosp Palliat Med. 2022;39(5):591-597. doi:10.1177/10499091211036698 19.
Guzman D, Ann‐Yi S, Bruera E, et al. Enhancing palliative care patient access to psychological
counseling through outreach telehealth services. Psychooncology. 2020;29(1):132-138. doi:10.1002/pon.5270 20.
Kozlov E, Reid MC, Carpenter BD. Improving patient knowledge of palliative care: A randomized
controlled intervention study. Patient Educ Couns. 2017;100(5):1007-1011. doi:10.1016/j.pec.2016.12.022 21.
Vincent D, Peixoto C, Quinn KL, et al. Virtual home-based palliative care during COVID-19: A qualitative
exploration of the patient, caregiver, and healthcare provider experience. Palliat Med. 2022;36(9):1374-1388. doi:10.1177/02692163221116251 22.
Cormi C, Petit M, Auclair J, Bagaragaza E, Colombet I, Sanchez S. Building a telepalliative care strategy
in nursing homes: a qualitative study with mobile palliative care teams. BMC Palliat Care. 2021;20(1):156. doi:10.1186/s12904-021-00864-6 23.
Bandini JI, Scherling A, Farmer C, et al. Experiences with Telehealth for Outpatient Palliative Care:
Findings from a Mixed-Methods Study of Patients and Providers across the United States. J Palliat Med. 2022;25(7):1079-1087. doi:10.1089/jpm.2021.0545