Hospice and Palliative Care During COVID-19 in New York City: Clinician-Reported Patient and Family Experiences and Lessons for Future Crises

Abstract

Objectives.

The COVID-19 pandemic complicated hospice and palliative care (HPC) experiences of patients and family caregivers. We sought to understand HPC professionals’ perceptions of patients’ and family caregivers’ HPC experiences during the COVID-19 pandemic in New York City and to make recommendations for improving HPC delivery during future public health crises.

Methods.

This was a qualitative descriptive study among a purposive, multidisciplinary sample of HPC team members at two large New York City metro hospice care organizations and one outpatient palliative care practice. Following individual interviews, we analyzed demographic data using descriptive statistics and interview data using inductive thematic analysis.

Results.

Participants (n=30) included nurses, physicians, social workers, chaplains, community health workers, and administrators and averaged 17 years in their profession and 10 years in HPC. Three themes characterized their perspectives on patient and family caregiver HPC experiences. Grappling with Tensions captured strains arising from a time of high patient/family needs and low HPC resources that related to care resources/delivery, patient-caregiver-HPC communication, and hospice policy/guidelines. Managing Dilemmas involved negotiating difficult choices around prioritizing patients for care by diagnosis/need, balancing necessary care and exposure risks, and prioritizing patient visitors (family/professionals). Experiencing Amplifications described intensification of existing HPC challenges including distressing deaths, racial/ethnic disparities, family caregivers/burden, misconceptions of hospice, and staff workload and turnover.

Conclusions.

To strengthen HPC delivery during crises that disrupt in-person HPC, we recommend enhancing continuity of care, expanding telehealth within hybrid care models, providing structured training and support for family caregivers, improving equitable access to high-quality HPC, and addressing workforce issues.

Introduction

The COVID-19 pandemic intensified the need for hospice and palliative care (HPC) as thousands of patients were hospitalized with serious medical complications¹. COVID-19-related state and local policies, fluctuating safety protocols, and fear of risking infection while seeking care^2,3 further complicated HPC experiences for patients and families. Multidisciplinary HPC professionals providing care in New York City (NYC) during the pandemic had a critical role in helping patients and family caregivers manage serious illness during this challenging time⁴.

Several studies provide patient and family caregiver accounts of their HPC experiences during the pandemic^5–9, while others examine related impacts observed by specific healthcare staff (e.g. social workers, chaplains)^10–12; however, comprehensive studies of HPC professionals’ perceptions of patient and family experiences remain limited. Given their interdisciplinary nature, HPC professionals witnessed physical, psychological, social, and spiritual challenges that patients and family caregivers may not articulate¹³. This comprehensive perspective enables them to describe the interplay of systemic factors (e.g., resource allocation, communication gaps, institutional policies) with patient and family caregiver experiences¹⁴.

Data are also available on rapid HPC responses during pandemics, including policy adaptations, flexible service delivery, staff training, communication systems, and use of technology and community resources.^15,16 Such studies highlight lack of organizational preparedness and staff risk perception and prompt proactive crisis planning in the post-COVID context^15,16. Therefore, we sought to learn: (1) How HPC professionals perceived patients’ and family caregivers’ HPC experiences during the COVID-19 pandemic in New York City; and (2) What implications, informed by these perceived experiences, can be proposed to improve usual HPC delivery and preparation for future public health crises?

Methods

Study Design and Setting

As part of a broader investigation of COVID-19’s impact on end-of-life care for vulnerable populations, we conducted a qualitative descriptive study¹⁷, given the limited understanding of this topic and the need to capture firsthand accounts from HPC professionals. We enrolled participants from two large NYC metropolitan hospice care organizations and one outpatient palliative care practice that provides in-person and telehealth home hospice services to older adults and their family caregivers across the five NYC boroughs. The Mount Sinai Health System Institutional Review Board provided Human Subjects approval. This paper adheres to the Standards for Reporting Qualitative Research (SRQR) guidelines¹⁸ (Supplemental Table 1).

Participants

As described elsewhere^19,20, participants were eligible if employed by their organization for at least six months prior to March 2020, the onset of COVID-19 in NYC. Through referrals from the organizations’ leadership and purposive sampling, we enrolled HPC professionals, including physicians, nurses, social workers, community health workers, chaplains, and administrators.

Procedures

We developed an interview guide on HPC professionals’ experiences providing care during COVID-19, in collaboration with two hospice nurse practitioners. The interview guide comprised 15 open-ended questions and was refined through pilot interviews (Supplemental Table 2). Questions about patient and family caregiver experiences were: 1) “How, if at all, do you think the patient/family experience was different at your organization during the COVID-19 pandemic than before the pandemic?” and 2) “Can you describe your relationship with patients and family caregivers after hospice enrollment?” Before interviews, we obtained verbal consent from participants and collected demographic/clinical information through an online Qualtrics survey. Interviews were individual, semi-structured, and conducted between October 2022 and February 2023 via a HIPAA-compliant video conference platform by a PhD-prepared nurse scientist and two master’s-prepared research coordinators. Interviews were recorded through the platform and transcribed verbatim. We continued interviewing until data saturation²¹, de-identified audio files, had them transcribed professionally, and used ATLAS.ti (version 21) to facilitate analysis.

Data Analysis

We summarized sample characteristics using descriptive statistics and analyzed interview data using inductive, codebook-style thematic analysis^22,23. Two coders first reviewed transcripts to familiarize themselves with data and noted early impressions. Then they openly coded the first five transcripts to create an initial code key, expanding and organizing it iteratively with the review of incoming transcripts. A third coder resolved disagreements. Once finalized, coders applied the code key systematically to all transcripts. Here, we present findings related to patient- and family caregiver-related codes (e.g., provider communication with patients/families, teaching/educating patients/families) (Supplemental Table 3) and identify themes related to patient and family experiences of receiving HPC during COVID-19, with other findings reported elsewhere^19,20. Each participant was assigned a unique identifier (e.g., P1).

Trustworthiness

To ensure trustworthiness, coders maintained an audit trail of coding decisions and materials (transcripts, code keys, memos), engaged in reflexivity checks of potential biases, conducted negative case analysis, and performed member checking with HPC professionals from one of the participating organizations to enhance confirmability. Regular team discussions were held to ensure consistency in data analysis. Credibility was supported through triangulation of diverse HPC professionals’ perspectives and by providing participant quotes to substantiate findings.

Results

Study participants^19,20 (n=30) (Table 1) were experienced (mean=17 years in their profession; 10 years in HPC) and well-educated (83%>master’s degree). Fifteen self-reported as non-Hispanic white, thirteen as being from a racial/ethnic minoritized group, and two did not disclose. Interviews lasted 45–60 minutes. We identified three themes characterizing HPC professionals’ descriptions of patient and family caregiver experiences: Grappling with Tensions; Managing Dilemmas; and Experiencing Amplifications of Existing Challenges. Full descriptions of themes and subthemes and illustrative quotes are presented in Tables 2–4; and summary findings are in Supplemental Table 4.

Table 1.

Sample Description (n=30)

Characteristics	Mean (SD)
Age	52.5 (10.7)
Years at current organization	10.6 (7.1)
Years in profession	17.1 (10.9)
Gender	N (%)
Female	22 (73%)
Male	7 (23%)
Preferred not to answer	1 (3%)
Education
Doctorate (MD, Pharmacy)	10 (33%)
Masters (SW, NP, MSN, MS Admin, MDiv)	15 (50%)
Bachelors (RN)	4 (13%)
Some College (CHW)	1 (3%)
Race/Ethnicity
White/Non-Hispanic	15 (50%)
Asian	5 (17%)
Black or African American	4 (13%)
Prefer not to answer/Hispanic	3 (10%)
Prefer not to answer/Prefer not to answer	2 (7%)
White/Hispanic	1 (3%)
Professional Type
Physician	6 (20%)
Registered Nurse	3 (10%)
Nurse Practitioner	7 (23.3%)
Social Worker	3 (10%)
Chaplain	2 (6.7%)
Community Health Worker	1 (3.3%)
Administrator	8 (26.7%)

Table 2.

Tensions Experienced by Patients and Family Caregivers during the Covid-19 Pandemic

Tension: The strain that occurs in a situation of high patient/family need and low hospice and palliative care resources.
Type	Subtype (need/resource)	Illustrative Quote
Care resources/Care delivery	Heightened care needs of COVID patients/Limited hospice and funeral services	We didn’t know enough about COVID at that time and we didn’t have the measures that we have today. So, these bodies could not be safely transported into uncontaminated areas. So now, we have to tell the family, “Your loved one has died. You have not seen them, but we cannot bring them home.” And now, we try to help them- try to coordinate getting them to now be buried, and the funeral homes were not taking any more bodies. They could not take them. They could not bring them into their facilities anyway because these were COVID-positive individuals. (P16, Community Health Worker)
	Heightened psychological distress/Inadequate psychological support	…it does make me think of psych care during COVID, which has just gone to pot completely. I mean, we used to have at least some people that would go to the home to provide psych care, and it’s very limited now, and it’s telephone only, which a lot of our patients don’t really want. And it’s been really challenging to get psych care for our patients since COVID. (P8, Registered Nurse)
	Hospital-home transitions/Shortage of caregivers and resources for home care	So if our patients were in the home and now they tested positive when in the hospital and then they wanted to send them home, the hospitals were stuck because they were like, ‘I can’t bring this patient anywhere.’ The nursing home’s not going to take them. The hospice organization will not go into the house or the home health organization. So, where do we go? And then the patient was being sent home with not a continuity of care, with nurses going in to assess them. (P5, Nurse Practitioner)
	Need for hospital care/Overwhelmed medical system	The hospital system was very overwhelmed, and at that time, because of the PPE shortages, hospices were not able to carry on as usual. (P11, Physician)
Communication	Need for telehealth/Limitations of telehealth	There are many times, for example, when our patients are close to death, and families, they don’t all live nearby. But their mom is dying or their dad is dying, or they want someone to talk to. They want to be filled in, and you have a whole conversation with them over the phone, you educate, and you provide support… I was informed that you can use telehealth for those visits, but it’s not something that can be ongoing. You can’t open a case per se on a telehealth visit. It has to be an in-person. So, there are certain things… I think can definitely need more work on. (P29, Social Worker)
	Need for quick decision-making/Inadequate communication	The turnover was super quick because most of the patients… came in and crashed and burned. They just came in really sick and got even sicker and died. Sometimes they came in really sick, stayed really sick, and then died. But that was, you know, a week or two. It was unusual for somebody to be in the hospital for a month during the surge. And so, the turnover was rapid. You could have one or two conversations with patients and family– or usually not patients. Mostly families trying to make high-stakes decisions and then either the patient’s condition made the decision for you or not. (P22, Physician)
Policy/Guidelines	Need for home visits/Home visitation restrictions	So, when the surge occurred, the providers, the MDs, and nurse practitioners, all homecare visits have been stopped. That is a challenge for us, because all we can rely on is calling the patient to get information and also relying on the visiting nurse. So, we weren’t able to send a doctor out. Let’s say a patient has a new wound or they’re having shortness of breath. We weren’t able to send a doctor in the next day. That was stopped for quite some time. (P23, Registered Nurse)

P= Participant

Table 4.

Amplifications Experienced by Patients and Family Caregivers during the Covid-19 Pandemic

Amplification: When existing hospice challenges became a greater problem due to the pandemic.
Type	Subtype	Illustrative Quote
Distressing death scenarios amid pandemic constraints	Accelerated death due to complications	It was much higher than the usual… but we usually treat a population that we know that there’s going to be deaths related… that is part of it. But the accelerated [rate] and the amount of death was so high, or just morbidity that was more than we usually would be accustomed, and our population was even more at risk for the complications, I think it is definitely hard. (P26, Physician)
	Undignified death due to delays in securing funeral services at home	…there was a big issue with patients who passed away… at home, we were able to always have the funeral home pick up the body and they didn’t have to [call 911]– our doctors would sign off on the death certificate and the funeral home would pick up the body of the expired patient, but due to a lot of people dying, that service wasn’t available. (P23, Registered Nurse)
	End-of-life distress due to delayed hospice enrollment	Certainly we know if a patient is hospice appropriate, and if it’s end of life, and they can’t get signed onto a hospice program, that will obviously be an issue in terms of pain management, in terms of good end of life care. So, there was some delay just in terms of our own shortage of nurses at the height of the pandemic where nurses were out sick or there was other issues. So, yeah, the delay of getting a person into a hospice program could be life-altering. (P30, Chaplain)
	Complicated bereavement over deaths	We didn’t talk a lot about deaths that we were surrounded with, people I had longitudinal relationships [with], my patients that died due to COVID during this time, that I’m really close to, that I knew since my fellowship, since I started here, that I’ve taken care of through all sorts of illnesses, and I’m like part of their family. And that was a real challenge of one, getting them the care they needed, but two, realizing that loss and giving it space and giving it time, that there’s grief that I have related to taking care of them as well. (P26, Physician)
Needs for accurate communication and education	Scarcity of clear, consistent information about COVID/vaccination leading to widespread fear	You always have COVID in an emergency room and so I think the families were afraid because of lack of information. So, that was another thing that social workers, all of a sudden, were providing for those that needed it, providing education. Many of them educated themselves by internet or the news or whatever, but some could not, so we would have to do that. So, I think family members were terrified in a lot of ways because they just felt anywhere they turn that they could be trapped with COVID. (P1, Administrator)
	Misunderstanding about hospice and palliative care	I felt that the referrals were less during COVID in terms of that because people were hearing things in the media that they’re letting everybody die and no, no, we’re not going into hospice. They’re going to kill us. (P5, Nurse Practitioner)
	Needs for timely/ongoing communication and health education	People died at home and no one knew because when they got sick they didn’t even call… it could have been done much more effectively to keep track of what’s going on, educate people… one other thing that federal tried, state tried and organization tried, and I think all failed, was trying to even out the playing field for access to broadband and smartphone. If there were some grants, there were some money from the state to allow people to get access to those things, people who were at Medicaid level. (P27, Physician)
Family caregiver burden/distressing but limited support in isolated home settings	Heightened family caregiving burden with inadequate support at home	…there was a feeling that they were dying alone. It was incredibly traumatic for those caregivers because - like I see death all the time, but so many of them, it’s really the first time that they’re caring for someone at-end-of-life. So, to try to explain how to put a diaper on or give morphine or whatever it is, you’re just really alone, And I don’t know that the families felt like we were really there as much. (P20, Chaplain)
	Heightened distress of bereaved families with limited bereavement support	When one of our patients died on the study program, we all got together and signed a condolence card. We would discuss the patient. We would call the [family]… expressing our deep condolences, try to keep in touch with them for at least a few weeks after to see and know that they were gonna be okay. That the survivors were going to be okay. None of this was possible during COVID. (P16, Community Health Worker)
Racism and disparities in hospice access/outcomes	Disparities in access to HPC resources driven by social determinants	Social determinants definitely affected how we can- it’s not how we can provide care- it’s the patient’s access to care. “I'm going to see how I feel based on, then I’m going to go to the ER,” versus someone who does have the resources can either get the medication they need or the test that they need, or just having the money to get a cab to go to urgent care, where a patient who’s living on low income, they’re not going to get a cab and go to urgent care… They likely wait until like a provider is able to see them… (P23, Registered Nurse)
	Disparities in death rates among patients of color	I also, each week, would do the death report coming out of the hospital… each week we’d review who died that week, and you could really see patterns of who died… that they’re largely black and brown, people of color. (N20, Chaplain)
	Racism in HPC due to misunderstanding	…we have people of Asian descent [who] certainly were targeted, which is just horrific. …there was one family that- it’s a nine-year-old girl is our patient in that family. Not only are they traumatized by having their nine-year-old daughter dying, but they’re also witnessing being blamed for COVID. Just terrible. …hospice is already hard without COVID, and you add in this, and it just amplifies discrimination, racism, classism… (P20, Chaplain)
Impacts of hospice staff stress/trunover on patient care	Increased staff workload	So in the surge, there was a delay only because the staffing wasn’t there, and not to say that the staffing had decreased, but with the existing staffing pre-COVID, all of a sudden there was a huge influx of referrals that they weren’t designed to handle… [and] there’s a certain nursing-to-patient ratio just for safety… and so, part of that influx, too, was not only processing the referrals, but also making sure that you have the right amount of people to handle those patients, because if you obviously have 20, you’re gonna compromise their care. (P3, Physician)
	Hospice staff turnover and shortage	[Visits were] limited by Personal Protective Equipment (PPE) and limited by oxygen, otherwise not impossible, but they couldn’t go in if they have no supplies… as recent as half a year ago, the issue we had was staff turnover. It was the first time there was a true staffing issue with home hospice. There were staffing shortages. They couldn’ t hire. (P25, Administrator)
	High staff burnout due to managing constant patient death	I had nurses that came from the hospitals that said they couldn’t deal with the constant death, and I tried to explain to them this is also about death and this is different because families are watching every minute of it opposed to say in the hospital where you have maybe more resources and they’ve come to us and realized now they’re leaving after a few months of us providing a lot of training, so it’s a burden on our staff that are also trying to precept new staff. (P1, Administrator)

HPC= Hospice and Palliative Care; P= Participant

Grappling with Tensions Related to Care Resources, Communication, and Policies

This theme captured perceived tensions with which patients and family caregivers struggled during the pandemic. Tensions were strains that occurred during situations of high patient/family need and low HPC resources. Participants perceived three types of tensions:

Care resources/Care delivery tensions included tensions that arose when there was a heightened need for hospice care and limited resources to deliver it. Participants described COVID-19 patients’ increased care needs (e.g., medication, oxygen, family support) colliding with equipment shortages, heavy staff workload, disconnection from family, limited home health aide visitation due to safety concerns, and unavailability of funerary services. Patients and family caregivers had heightened anxiety due to uncertainty about care access and delivery, fear of COVID-19 heightened by distressing media coverage, and anger about perceived avoidable deaths, amidst inadequate psychological support due to staff shortages. Participants described unpredictable and limited transition options for patients, often requiring nursing home placement rather than returning home due to unavailability of family caregivers at home, which impacted continuity of care. There was also tension between patients’ increased need for hospital-level support with a lack of medical resources in home settings and limited hospital capacity and overwhelmed 911 emergency systems.

Communication tensions were related to the communication among patients, family caregivers, and HPC professionals. Tension arose with the necessity of using telehealth as a means for communication, decision-making, and providing care (e.g., conducting patient assessments, providing psychological/practical support). This need had to be balanced with the limitations of telehealth, such as the absence of physical contact or in-person observation, potential emotional disconnection, ethical issues (e.g., non-ideal settings to discuss sensitive topics, a difficult informed consent process, and compromised patient privacy with translator inclusion), and technological issues (e.g., varying digital literacy, disparities in access to/quality of telehealth care, and barriers for patients with limited English proficiency and cognitive impairment). Another communication tension emerged from the need to make rapid decisions amid unpredictable changes in patients’ physical conditions, urgent but disrupted goal-setting conversations, and families’ reduced decision-making capacity due to being overwhelmed and reduced time and energy.

Policy/Guideline tensions were those relating to hospice policies and guidelines. A prominent tension was the hospice needs for in-person home visits conflicting with public isolation requirements. Relatedly, patient/family refusal of in-person visits despite heightened caregiver strain due to concern about exposure risks conflicted with hospices’ professional guidelines around in-person visits as best practice.

Managing Dilemmas Around Patient Prioritization, Exposure Risk, and Visitor Access

This theme described perceived: 1) patient and family caregiver experiences of negotiating situations where a difficult choice had to be made between two or more options; and 2) how a difficult choice made by HPC professionals, such as which type of patient to prioritize, impacted patient and family experiences. Participants described three types of dilemmas:

Determining high vs. low priority patients amid limited resources.

Due to the surge in COVID-19 patients, there was a strain on resources that filtered downstream to HPC professionals, who faced the dilemma of which patients to prioritize, those with COVID-19 or others. Even among COVID patients, with limited resources and a high volume of hospice referrals, HPC professionals were forced to make difficult triage decisions about which patients to admit first. Factors influencing these decisions were whether COVID-19 was the reason for hospice admission, whether the patient belonged to an underrepresented group (e.g., undocumented individuals or people of color), and the inherent unpredictability of the COVID-19 prognosis, where patients who appeared stable and “could wait” ended up experiencing a rapid decline and sudden death.

Obtaining necessary care/Increased exposure risks in direct patient contact.

Home-based patients and family caregivers faced the dilemma of either accepting hospice visits to receive hands-on symptom and psychosocial support while risking COVID-19 exposure or refusing visits to reduce exposure risk at the cost of increased caregiving burden and compromised quality of life. Exposure risks existed regardless of care setting, whether patients and families opted for home visits or hospital care. Allowing hospice staff into the home introduced potential exposure from outsiders, while patients admitted to inpatient units faced risks from other infected patients or infected healthcare professionals. Family caregivers, particularly those who worked in healthcare or needed to leave the home for vaccination, faced added strain in balancing caregiving responsibilities with the risk of exposing their loved ones.

To reduce exposure risk, participants reported that some patients and families requested that hospice nurses isolate for 14 days before home visits, creating operational dilemmas for staff who could not suspend care for other patients. Declining the isolation request meant the family might refuse the home visit, affecting care. When in-person visits were limited or declined for safety reasons, hospice admissions and follow-up care were often awkward, stressful, and impersonal. When the patient was actively dying, the dilemma that hospice staff faced was in-person visit exposure, particularly when families declined PPE use, versus the limitations of remote support, which was often inadequate, especially for families with limited technological literacy.

Visitation by family/Visitation by hospice staff during visitor restrictions.

In hospital-based hospice settings with strict visitor limits, participants described dilemmas regarding whether limited visitation slots should be allocated to family members or hospice staff. When visits were reserved for family, the dilemma was which family member could be present. When visits were allocated to hospice staff, clinicians experienced emotional distress witnessing patients die without family present.

Experiencing Amplifications of Existing Challenges

This theme captured existing hospice challenges experienced by patients and caregivers that became a greater problem due to the pandemic. Participants reported four types:

Distressing death scenarios amid pandemic constraints.

Participants described death and dying experiences as often being more harrowing during the pandemic. Deaths were accelerated due to COVID-related complications. Patients experienced undignified deaths due to delays in funeral services and religious rituals in resource-constrained home settings. Delayed hospice enrollment amplified end-of-life patients’ and family caregivers’ physical and psychological distress. These distressing deaths led to complicated bereavement grief among HPC professionals and families.

Needs for accurate communication and education.

Also reported was that the lack of clear, consistent information about COVID-19 and COVID-19 vaccinations contributed to widespread fear and uncertainty, underscoring the increased need for uniform information from HPC professionals. Misunderstandings about HPC, often fueled by the media during the pandemic, complicated decision-making among patients and family caregivers, emphasizing the need for accurate and clear HPC education. Timely and ongoing communication on health status and the delivery of health education are required, especially through expanding digital access (e.g., Smartphones).

Family Caregiver Burden/Distress with Limited Support in Isolated Home Settings.

During the pandemic, family caregivers were noted as assuming increased home-care responsibilities, yet often without sufficient experience or adequate support/training from HPC professionals due to staff shortages or care disruption. Families were also described as increasingly distraught at being unable to be present for hospitalized patients’ deaths or to have religious rites at home, however, HPC professionals were unable to express condolences or otherwise support family bereavement in person as usual. These circumstances further intensified family caregiver strain, distress, and isolation.

Racism and death disparities in hospice access and outcomes.

Participants described that patients from racial and ethnic minoritized groups encountered disparities in access to HPC resources and experienced disproportionately higher mortality rates. Participants noted this reflected long-standing systemic inequities in healthcare settings. Reports of racism, especially toward Asian groups, increased barriers to accessing equitable HPC services, compounding already challenging HPC experiences for marginalized communities.

Impacts of hospice staff stress/turnover on patient care.

Increased hospice staffing issues impacted patients’ and family caregivers’ HPC experiences. HPC professionals reported a higher workload (e.g., increased documentation) and a workforce shortage due to illness and turnover, which were compounded by the need to allocate time to recruit and train new staff. Many of these new hires came from non-HPC settings and were unprepared for the high volume of COVID-related deaths; this led to greater burnout and exhaustion, thus many quit shortly after existing staff had dedicated time to training them—time that had been diverted from patient care. These issues disrupted the continuity and quality of HPC, leaving patients and families feeling anxious and inadequately supported at a critical time.

Discussion

We have detailed tensions, dilemmas, and amplifications to existing challenges in HPC experienced by patients and family caregivers during the COVID-19 pandemic as perceived by HPC professionals. Findings align with social workers’^12,24,25 and chaplains’¹³ perceptions of patient and caregiver distress and care disruptions during the pandemic, as well as with firsthand patient and caregiver accounts^5–8. Our study extends the literature by incorporating diverse professionals including physicians, nurses, social workers, chaplains, community health workers, and administrators, leading to novel insights on how pandemic-specific conditions generated tensions related to care resources, communication, and policies; created decision-making dilemmas in patient prioritization, exposure risk, and visitor access; and intensified preexisting HPC challenges regarding death and dying, misunderstanding about HPC, family caregiving burden, health disparities, and workforce strain. Findings elucidate the complex interplay among structural constraints, workforce dynamics, and patient/family experiences during public health crises.

This work informs preparation for future crises that disrupt in-person HPC and cause patient and/or family isolation. During public emergencies (e.g., catastrophic weather events, public health emergencies), HPC professionals must address tensions arising from high patient and family needs amid constrained resources; this can be achieved by proactively determining the level of support necessary to keep patients at home and coordinating with community centers to maintain access to essential services and reduce unnecessary emergency calls¹¹. Additionally, HPC professionals can support patient and family caregivers in navigating decision-making dilemmas by providing timely, ongoing and clear information^5,26. Importantly, amplification of existing HPC challenges reinforces the need for crisis preparedness and improvements in usual HPC services, which informed the following actionable recommendations (Figure 1).

Figure_1.

Recommendations to Prepare for Crises that Disrupt In-Person Hospice and Palliative Care.

Enhance continuity of care.

Distressing death and dying scenarios, often occurring in the context of disrupted care (e.g., delayed hospice enrollment, staff turnover) underscore the importance of strengthening continuity of care during crises. Strengthening partnerships among diverse healthcare resources, particularly by enhancing community-based HPC services, has been identified as a crisis strategy to lessen hospital strain and ensure timely, holistic care in home and community settings²⁷. Establishing referral pathways between hospitals and HPC services can help reduce unnecessary hospital admissions and improve care coordination in isolated areas or in resource-limited times. Supporting home health aides through training and fair compensation is essential to sustaining a competent workforce and ensuring continuity of care. Additionally, proactive planning for alternative care sites (e.g., specialized post-acute care settings) may mitigate hospital capacity challenges²⁸. Care during emergencies should include introduction of patients and family caregivers to multiple HPC team members early in the care process to maintain relational continuity, emotional stability, and consistent care quality during staff turnover or absences.

Expand telehealth in hybrid care models.

Amplification of communication gaps and misunderstanding highlights the increasing need for reliable, flexible communication and education in HPC. Hybrid care models that combine in-person and telehealth can support timely, ongoing, and accurate communication. While in-person visits remain essential for initial assessment and relationship-building, virtual follow-up via telehealth can maintain effective and continuous communication^5,29,30. However, variability in access to and implementation of telehealth remains, particularly for patients in low-income or rural communities. Healthcare systems should support hybrid care models by investing in internet access, electronic devices, digital literacy, and privacy/security training to expand the use of telehealth in HPC ^31,32. To provide care to patients and family caregivers who are not telehealth- or tech-savvy, in-person (e.g., mobile palliative care unit, community partnerships) visits have been implemented^33,34. Determining appropriate use of telehealth (e.g., broadening use beyond recertification visits) and establishing clear practice standards are key to delivering high-quality, person-centered care³⁵. Policy changes and emergency-related flexibilities may be necessary to implement these recommendations. For example, current regulations count hospice visits toward quality metrics only when they occur in person, which can adversely affect quality scores even when certain aspects of care can be delivered effectively via telehealth or telephone modalities.

Provide training and support to family caregivers.

Family caregivers’ burden and distress were intensified in isolated home settings, yet they were unprepared and unsupported. Expanding structured training programs and developing standard, accessible educational materials (e.g., tutorial videos on basic care, symptom monitoring and management) is vital to support caregivers’ effective care management³², especially when isolated. Emotional and logistical support, including virtual counseling, support groups, and practical assistance (e.g., grocery pick-up or delivery services), can boost caregiving confidence¹².

Improve equitable HPC access and quality.

Structural disparities were further exposed during the pandemic, with minoritized patients experiencing disproportionate barriers and poorer health outcomes. These observations align with prior research demonstrating higher COVID-19 mortality among racial and ethnic groups³⁶, lower hospital costs of care for Black compared to White patients³⁷, and negative mental, social, and physical health impacts of anti-Asian hate³⁸, and call for equity-focused strategies in HPC crisis preparedness. HPC policies, developed by discipline as appropriate, should prioritize timely access to essential services (e.g., food assistance, hospice enrollment, home health aides, technological support services)¹⁹ and should address equitable resource allocation to prevent disparities in care delivery. In particular, crisis preparedness plans should incorporate proactive communication and anti-racist approaches to mitigate misunderstanding and prevent fear from fueling discrimination. Additionally, partnerships with community-based organizations serving minoritized populations can build trust and support equitable HPC delivery during crises.

Address staff workload and turnover.

Burnout and turnover among HPC professionals, driven by increased workloads and inadequate support during the pandemic, significantly affected patient and family experiences. While some institutions have implemented crisis-response training, many still lack sustained workforce support mechanisms. Ongoing professional development and regular supervision are needed to strengthen clinicians’ competency and emotional resilience during crises^11,20,39. To prepare for future emergencies, HPC organizations should streamline administrative tasks to reduce non-clinical burdens and strengthen collaboration between primary care providers and HPC specialists. HPC experts can train front-line providers in critical care topics (e.g., goals of care conversations and symptom management) and provide 24/7 telehealth consultation via dedicated hubs or statewide call centers²⁸.

Limitations

Our analysis relied on HPC professionals’ accounts rather than direct patient or caregiver perspectives, which may limit the depth of insight. Some data related to multiple themes; we reported data under the theme that best matched participants’ emphasis. As noted^19,20, there are sampling limitations: we conducted interviews more than 2.5 years after onset of the pandemic, which may have affected participants’ recall and limited their ability to convey the full emotional and logistical strain experienced. We did not include aides or individuals in other pertinent clinical roles, and participants were referred by organizational leadership, introducing selection bias. Although all participants worked within NYC-based HPC organizations, perceptions varied by site and are presented in aggregate. Despite these limitations, findings offer valuable insights to inform future crisis preparedness.

Conclusion

This study describes HPC professionals’ perceptions of patient and family caregiver experiences during the COVID-19 pandemic, highlighting tensions related to limited care resources/delivery, communication barriers, and restrictive policies; managing decision-making dilemmas by weighing risks and benefits within constrained options; and experiencing amplifications of existing HPC challenges. Enhancing crisis preparedness through strategic planning and strengthened support systems can improve crisis and usual HPC.

Table 3.

COVID-Specific Dilemmas Experienced by Patients and Family Caregivers

Dilemma: A situation where a difficult choice must be made between two or more options.
Type	Subtype (option 1/option 2)	Illustrative Quote
Determining high vs. low priority patients amid limited resources	Prioritizing COVID patients/Prioritizing non-COVID patients	I heard many heartbreaking stories where because of the priority of beds going to COVID patients, things like cancer care, screenings, were really put off, and so I personally saw this really impact people, undocumented members of our community, people of color, where they did not have access to care, and they might have lived if they had gotten earlier treatment for their cancer. (P20, Chaplain)
Obtaining necessary care/Increased exposure risks in direct patient contact	Wanting hospice care/Not wanting hospice in-person visits	…our company policy is weekly visits, then you have to have some documentation that a patient or family requested that we don’t do our usual policy and extend it to the limited CMS guidelines to allow. …we had to trace down some families and tell them that they can’t stay on if we don’t [meet] our visit requirements because they just don’t want us coming into their home. Like they want the service. They do want the help, but they don’t want us to go to their house. (P3, Physician)
	COVID exposure from home visits/COVID exposure from inpatient care	If they let the team in the home, they could bring the germs in from outside. If they send the patient to the IPU (Inpatient Palliative Units), the patient could be exposed. (P2, Social Worker)
	Family providing in-person care with the risk of exposing the patient to COVID/Family leaving the patient alone	…providing emotional support was really tough because the… granddaughter, who was her caregiver, works in a hospital and contracted COVID without knowing it and brought it home to the patient, so you’ve got a situation where the people are in a bind, right? The caregivers, because you can’t leave these patients alone, but you also don’t want to put them at risk. (P20, Chaplain)
	Hospice nurse availability to see other patients/Nurse isolation before home visit	We had a couple of patients’ families who said, “Before you come into my home, we want you to isolate for 14 days.” “Unfortunately, we can’t ask our nurse to isolate for 14 days before entering your home. They still need to see other patients.” Some of our patients’ families asked us to provide a PCR test for our nurses, but we can’t do that. That’s against HIPAA. We can’t disclose our nurse’s medical information. (P21, Nurse Practitioner)
	In-person visits with the risk of exposing patients and hospice staff to COVID/Remote care with inadequate support	Telehealth can sometimes feel inadequate. I think they really often feel like they need somebody coming to the house and checking the patient… it shifts the burden already disproportionately on families given our current model of hospice care, and it shifts that burden even more at a time when the stakes are higher. (P22, Physician)
Visitation by family/Visitation by hospice staff during visitor restrictions	Prioritizing family visitation/Prioritizing hospice staff visitation given hospital visitor restrictions	There were some hospitals where you could only have one visit a day or two visitors a day. So, if I would call a patient’s family, and I would say, “I would like to come and visit,” there was a whole big to-do. “Well, Rabbi, we'd like to see you, but then my brother wouldn’t be able to come because you can only have two visitors.” And then trying to explain to the hospital that I work for the hospice and that my visit should not count as one of the two. So, there was a lot of that type of haggling a bit certainly at the height. (P30, Chaplain)
	Hospice staff instead of family seeing patients/Hospice staff emotional strain	We did have staff who did get in to see patients in facilities, and they would help the patients communicate with their families, so that was another kind of emotional strain on the staff that they were seeing patients in the facilities alone or dying alone, and then especially the GIP [General Inpatient Care] settings, but… even in the home, families weren’t connecting with the patient, so they would have less social interaction than they normally would…(P17, Administrator)

P= Participant