Disruptions in Home Hospice Care due to the COVID-19 Pandemic

Abstract

Background:

There is limited evidence regarding the challenges of providing hospice care to those dying at home during the COVID-19 pandemic.

Objective:

To describe the challenges of home hospice care and the specific types of disruptions in care processes experienced by patients and families.

Design:

Qualitative study of the electronic medical record notes of a large New York City (NYC) home-based primary care program.

Setting/Subjects:

Subjects were 58 patients referred to hospice who died during the initial NYC COVID-19 surge from March to June 2020.

Results:

We identified six domains of disruptions in home hospice care: delayed hospice enrollment, inability to conduct home visits, lack of needed supplies, communication failures, strained caregivers, and limitations of telehealth.

Conclusions:

This study provides a critical first analysis of disruptions in home hospice care that can feasibly be addressed and must be prioritized by hospices throughout the ongoing pandemic and in advance of future emergencies.

Introduction

There is urgent need to build upon the experience of the COVID-19 pandemic to better prepare hospices to deliver high-quality end-of-life care in the ongoing pandemic as well as in future emergencies. In the first three weeks of March 2020, New York City (NYC) accounted for ∼5% of the world's confirmed COVID-19 cases.¹ In the following two months, NYC experienced >200,000 COVID-19 cases with a crude fatality rate of 9.2% overall and 32.1% among hospitalized patients.²

Not only has COVID-19 had dramatic and direct impacts on morbidity and mortality that have impacted the health care system, but public health containment and mitigation efforts have significantly disrupted access to care, including hospice care. Although much has been learned regarding the experiences of those dying in the hospital and nursing home settings during the pandemic,^3–5 little is known about the end-of-life experiences of community-dwelling older adults with dementia and other serious illnesses.

Emerging evidence suggests that hospices have been instrumental in supporting community-dwelling seriously ill patients in their wish to remain at home and avoid burdensome hospitalizations and the prospect of dying alone in the hospital.^6,7 At the same time, hospice staff faced significant strain.^8,9 There is limited evidence regarding the challenges of providing hospice care during the pandemic and the specific types of disruptions in care processes.

To address this gap, we conducted a qualitative content analysis of clinical notes regarding experiences of patients and families cared for by a home-based primary care program in NYC who were referred to hospice and died between March and June of 2020. Identifying challenges to providing ongoing hospice care in the home during the COVID-19 pandemic will inform policy and practice changes that can improve home hospice care during future emergencies.

Methods

We conducted a qualitative content analysis of clinical data and electronic medical records (EMRs) from all patients cared for by Mount Sinai Visiting Doctors (MSVDs) home-based primary care practice who were referred to hospice and died during the first wave of the COVID-19 pandemic in NYC (March 1–June 30, 2020). MSVD's interdisciplinary care team of physicians, nurse practitioners, registered nurses, social workers, and administrative assistants care for 1300 homebound patients annually, visiting patients approximately every two months, and coordinating skilled nursing and hospice services with contracted community providers. When MSVD patients enroll in hospice, the MSVD physician routinely acts as the physician of record and the team remains actively involved in all aspects of care.

For each decedent, we manually reviewed EMRs to extract sociodemographic and clinical characteristics and date and location of death. We examined EMR notes (e.g., unstructured clinical notes, documented phone calls, and messages exchanged through the electronic patient portal) to identify broad topic areas to incorporate into the chart abstraction tool: family caregiving, paid caregiving, medical supplies, hospital services, symptom management, and hospice services. We extracted dates, summaries, and passages of text and continually refined the abstraction tool as new themes emerged. One study team member (P.K.) performed all chart abstractions and a second (E.X.) reviewed 10% of abstracted charts.

Clinical questions that arose during chart abstraction (e.g., if delays in hospice were related specifically to COVID-19) were reviewed by study clinicians (J.R., M.Z.). These additional layers of review helped ensure we limited potential bias in the abstractors' interpretations and assumptions. We downloaded abstracted data to a password-protected file and linked the file to sociodemographic and clinical data for analysis. This study was approved by the Mount Sinai institutional review board.

Results

Our sample consists of 58 individuals cared for by the MSVD program who were referred to three NYC hospices (Table 1). Fifty of the 58 sampled individuals enrolled with hospice before death. The majority were female (70.7%), living with dementia (82.8%), and living alone (55.2%). The location of death for the vast majority (87.9%) was their home.

Table 1.

Homebound Patients in New York City Referred to Hospice during the Initial COVID-19 Surge in 2020, N = 58

	n	%
Age (mean, SD)	89.9 (8.9)
Female	41	70.7
Race/ethnicity
White	33	56.9
Hispanic or Latino	16	27.6
Asian	1	1.7
Other/unknown	8	13.8
Married	18	31.0
Lives alone	32	55.2
Medicaid enrollee	26	44.8
Dementia diagnosis	48	82.8
Elixhauser comorbidity index (mean, SD)	4.2 (2.6)
Housing
Private apartment	49	84.5
New York City Housing Authority	7	12.1
Other congregate housing	2	3.5
Hospice duration (mean/median days)	101.8/18
Month of death
March	12	20.7
April	26	44.8
May	13	22.4
June	7	12.1
Location of death
Home	51	87.9
Hospital	6	10.3
Other facility	1	1.7

SD, standard deviation.

We identified six domains of disruptions in hospice services: (1) delayed hospice enrollment after hospice referral, (2) inability to conduct home visits, (3) lack of needed supplies, (4) communication failures, (5) strained caregivers, and (6) limitations of telehealth. Table 2 highlights examples and illustrative quotes of each domain. It is important to note that many disruptions were intertwined and reveal the complexity of delivering hospice in the context of a pandemic. For example, delayed hospice enrollment was common, contributing to uncertainty about how needed care (including essential supplies) would be delivered:

Table 2.

Sources of Hospice Care Disruptions during the COVID-19 Pandemic

Domain	Domain examples	Illustrative quotes
Delayed hospice enrollment	Cannot conduct face-to-face admission visit Staff shortage to conduct intake	April 1, 2020, PCP MD: Called hospice intake to follow-up on status of referral, enrollment set for [3 days from now]; I talked to see if this could be expedited, seems they don't have capacity for earlier visits
Inability to conduct home visits	Staff unwillingness to enter homes Staff illness and quarantine Caregiver fear of hospice staff entering home	April 10, 2020 RN: Patient is not eating or drinking; nurse assigned to see the patient Saturday has rejected the case because patient developed a cough; now they are concerned about possible COVID; RN cannot see COVID or possible COVID-positive patient; nurse has that right; visit moved to Monday
Lack of supplies	Shortage of PPE for home visits Shortage of oxygen for symptom management	June 3, 2020, RN: patient's wife is stating patient is dying and breathing fast… patient's daughter arrived yesterday and staying in another apartment because it's hard for her to be there and watch… no oxygen in the home… hospice RN did video visit… said patient may not get oxygen in time if it's ordered now
Communication failures	Ambiguity regarding notification of the patient's passing Lack of follow-up with family	May 26, 2020, PCP MD: Called hospice to discuss why our practice hadn't been notified [of patient's death] as I had confirmed on Friday with intake nurse that I wished to remain attending of record April 13, 2020, Covering NP: I understand hospice is extremely overwhelmed but communicating to daughter of status is vital
Strained caregivers	Caregivers unprepared for increased responsibility for care Challenges of training for end-of-life care virtually	April 16, 2020, PCP MD: Hospice care manager states they can likely do IVF and [antibiotics] abx if [daughter] can be taught to monitor/remove; [husband] is unhappy with this plan but states he prefers it to taking her to ER. March 27, 2020, PCP MD: [caregiver] is feeling very overwhelmed by the waiting and unknown. Also missed [hospice RN] who is apparently in quarantine
Limitations of telehealth solution	Caregivers/patients unable to access technology Difficult to communicate sensitive topics and conduct caregiver training	April 15, 2020, RN: Hospice offered virtual visit but son did not have technology April 3, 2020, PCP MD: [Hospice] will require signed consents prior to visit; RN tried to call patient's daughter to find out if she has e-mail to receive forms to sign and send back. Not sure if she is able to do so; [hospice] may not open the case…

NP, nurse practitioner; PCP, primary care provider; MD, medical doctor; PPE, personal protective equipment; RN, registered nurse.

Oxygen was ordered yesterday. Earliest admission date to hospice is in 6 days, but they will keep him on the “back up list” so that if another case gets cancelled his will be moved up. (Hospice Registered Nurse [RN]) will keep me posted re: oxygen delivery. Not yet clear when it will be delivered. I will check in w/her later today. (RN April 09, 2021)

Similarly, the frequently noted inability of hospice staff to conduct home visits was linked to reports of high levels of caregiver strain:

Spoke to NP, patient is not eating or drinking…the nurse assigned to see the patient on Saturday has rejected the case because the patient developed a cough. Now they are concerned of possible COVID. The RN cannot see COVID or possible COVID-positive patients. The nurse has that right. Covering NP will order antibiotics to reduce daughter's anxiety. Patient is entering the dying process. (RN April 10, 2020)

This strain was often exacerbated by communication failures; as one RN noted in her conversation with a hospice contact, “I understand hospice is extremely overwhelmed but communicating to daughter of status [of patient] is vital.”

Although telehealth was a timely and effective intervention to adapt to limited home visits, providers worried that it could not fully replace in-person assessment and care provision.

Overall situation seems to me that patient's children, though clear they want to take care of their mom at home, have limited understanding of her condition or impending death and that video visits aren't sufficient for this…family really needs someone to assess her and communicate that in person, as well as teach them how to use meds. (Primary Care Provider; Medical Doctor April 29, 2020)

Discussion

Patients, families, and providers experienced a range of disruptions in home hospice care during the first COVID-19 wave in NYC. Given MSVD is an established home-based primary care program with substantial expertise in supporting transitions to hospice and community resources, these disruptions may represent a best-case scenario of end-of-life care early in the pandemic. In settings in which care is more fragmented or providers have less experience providing in-home care at the end of life, disruptions may have been more extensive.

Although our findings describe challenges throughout the episode of hospice care, delays in the start of hospice care were particularly disruptive compared with usual practice, and 14% of our sample died before enrollment. Typically, hospice requires intensive involvement of the interdisciplinary care team in the first few days of hospice enrollment to develop and implement a personalized care plan, yet during the COVID-19 pandemic, the first days of hospice enrollment were marked by unpredictable hospice visits and supply delays.

Although some of these challenges may be unavoidable in an emergency, communication failures exacerbated their impact on patients and families and contributed to a lack of understanding of who was in charge of patient care during the transition to hospice care. Future planning for hospice care emergencies must focus not only on providing care to existing patients, but also creating clear protocols and communication strategies to support those awaiting hospice enrollment.

Given the lack of in-person home visits in particular, telehealth appeared crucial to the ongoing care of patients at the end of life, including admission intake visits and caregiver education and support. Yet providers also worried about their ability to adequately assess patients, train caregivers, and provide support remotely given the “high touch” nature of hospice care. End-of-life conversations can be difficult to navigate during ordinary times, but our findings alongside other emerging research suggest that building trust and addressing these sensitive topics through telehealth can be particularly challenging.¹⁰

These concerns, alongside documented disparities in access, and patient and caregivers' ability to engage in telehealth,^11,12 must be thoughtfully considered when deciding when and how telehealth can augment existing in-person home hospice care to truly meet patient and caregiver needs and adequately prepare them for the end of life.

Our study had some limitations. We were unable to incorporate the perspective of hospice teams, and the experiences of health care providers in NYC during the study period may not be generalizable to other settings and time periods. Despite the disruptions noted, the hospice teams continuously cared for patients in the community, even after the MSVD teams halted in-person visits. A study incorporating the hospice perspective and fully triangulating the experience of home hospice patients during the pandemic is underway.

Challenges in end-of-life care access, coordination, and quality are not new. The stress of COVID-19 both highlights existing deficiencies and illuminates new areas to be addressed to ensure preparedness for future pandemics and other emergency scenarios.

Authors' Contributions

All authors were involved in the study concept and design. All authors were involved in analysis and interpretation of data. All authors were involved in preparation of the article.

Sponsor's Role

Funders played no role in the study's design, methods, data collection, analysis, and preparation of the article.

Funding Information

The study was funded by National Institute on Aging R01 AG060967 (K.A.O.) and National Institute on Nursing Research R01 NR018462 (M.D.A.).

Author Disclosure Statement

No competing financial interests exist.