“It Felt Like Throwing in the Towel”: Family Caregiver Perspectives on End-of-Life Decision-Making in COPD

Abstract

Background:

Chronic obstructive pulmonary disease (COPD) has an unpredictable trajectory and high symptom burden, complicating end-of-life (EOL) decisions around place of death and hospice use. Little is known about how families navigate these decisions.

Methods:

We conducted semi-structured interviews bereaved caregivers of people with COPD who received pulmonary care at a U.S. academic center and died within 12 months. Two investigators performed template analysis to identify themes.

Results:

We interviewed 18 caregivers (median age 58; 50% Black; 89% female). Fifty-six percent of decedents received hospice; 33% died at home. Caregivers described five themes: missed prognostic cues and poor communication; hospice as both loss and relief; home as ideal but hospital as default; financial influences on decisions; and mismatch between hospice and COPD needs.

Conclusions:

Caregivers identified a readiness gap driven by prognostic uncertainty, communication challenges, and financial constraints. Clearer communication and hospice models better aligned with COPD are needed.

Key message:

Family caregivers of people with COPD described a readiness gap in end-of-life decision-making, marked by delayed communication, crisis-driven hospice referral, and limited support for home death. Addressing this gap will require earlier conversations and hospice models better aligned with COPD’s prolonged and unpredictable course.

Introduction:

Chronic obstructive pulmonary disease (COPD) is a leading cause of morbidity and mortality, marked by functional impairment and high symptom burden near the end-of-life (EOL). ^1-3 Prognostication in COPD remains challenging because of its unpredictable illness trajectory with periods of stability punctuated by acute exacerbations with partial recovery, making it difficult to prepare for EOL. ^4-7

Although hospice improves comfort, caregiver support, and reduces intensive care utilization, people with COPD are less likely than those with cancer to receive hospice (39.0% vs 59.5%).⁸ When they enroll in hospice, they do so later and have higher odds of live discharge, including from hospitalization or loss of hospice eligibility. ^9,10 Designed around cancer trajectories, the Medicare Hospice Benefit requires forgoing disease-directed care during the terminal phase that is often difficult to identify in COPD. Hospice was also designed to support dying at home, with limited inpatient coverage. ¹¹ Although most individuals prefer a home death and home deaths in COPD have increased to 35% in recent years, caregivers are often unprepared for the reality of EOL care at home and unaware of hospice limitations. ^12-14 To better understand these disparities, we conducted a qualitative study of bereaved caregiver perspectives on hospice use and place of death in COPD.

Methods:

Sample

We conducted semi-structured interviews with English-speaking unpaid caregivers ≥21 years old of people with COPD who had been seen in Emory Healthcare pulmonary clinics and died within the past 12 months of respiratory-related causes as determined by chart review. Decedents were identified through electronic medical record review using COPD-related International Classification of Diseases-9/10 codes, with spirometry-confirmed airflow obstruction (Forced expiratory volume in 1 second /Forced vital capacity < 0.70). ¹⁵ During the intake call, we confirmed the cause and place of death and identified the family member most involved in caregiving to determine eligibility.

Participant Recruitment and Interviews

Eligible participants received an opt-out letter and were then called by a research coordinator (C.P.). Participants provided informed consent prior to the interviews. The Emory University Institutional Review Board approved this study (STUDY#00004710).

The interview guide (Supplement) was developed through literature review and expert input, pilot-tested for clarity and informed by the Theory of Dyadic Illness Management, ¹⁶ which conceptualizes illness as a shared patient–caregiver experience. Interviews were conducted by phone or videoconference between April 2024 and February 2025 and lasted approximately one hour. All interviews were professionally transcribed via human transcription (Rev.com). All interviews were conducted by a pulmonary and critical care clinician (N.S.) with formal training in qualitative research.

Qualitative Analysis

We conducted template analysis, combining predefined codes from existing literature with inductive coding to develop themes. ¹⁷ Two investigators (N.S., T.B.) independently reviewed transcripts, refined the coding framework iteratively, and double-coded all transcripts using MAXQDA. ¹⁸ To maximize validity and trustworthiness, we used team-based development of the interview guide and codebook, probes, ongoing transcript review, consensus of final coding, and member checking with a lay summary of this manuscript sent to participants for feedback. ^19,20 Reflexivity was addressed through team discussions of how clinical and caregiving perspectives shaped interpretation. This study adhered to the Consolidated Criteria for Reporting Qualitative Research checklist (Supplemental Table 1). ²¹ The final sample size was determined by thematic saturation. ²²

Results:

Of 114 bereaved caregivers mailed recruitment letters, 96 were excluded (primarily due to inability to contact), and 18 enrolled (Supplemental Figure 1). Participants had a median age of 58 years (IQR 53–69); 50% were Black, 89% were female, and 50% were adult children (Table 1). Approximately half of decedents received hospice, and 33% died at home. Illustrative quotes are shown in Table 2.

Table 1.

Sociodemographic Characteristics of Bereaved Caregivers and Decedents

Characteristic	Bereaved Caregivers (n=18)	Decedents (n=18)
Age, years, median (IQR)	58 (53–69)	75 (70–84)
Race and Ethnicity
– Black	9 (50)	10 (56)
– White	9 (50)	8 (44)
Sex, n (%)
– Female	16 (89)	7 (39)
– Male	2 (11)	11 (61)
Marital Status of Decedent	—
– Married	—	9 (50)
– Divorced	—	4 (22)
– Single	—	3 (17)
– Widowed	—	1 (6)
– Unknown	—	1 (6)
Caregiver–Decedent Relationship
– Child	9 (50)	—
– Spouse	7 (39)	—
– Cousin	1 (6)	—
– Mother	1 (6)	—
Hospice
– Home hospice	—	6 (33)
– Skilled nursing facility with hospice	—	4 (22)
– Did not receive hospice	—	8 (44)
Place of Death
– Home	—	6 (33)
– Hospital	—	8 (44)
– Skilled Nursing Facility	—	4 (22)

Notes: N (%) unless otherwise noted.

Table 2.

Illustrative Quotes for Each Theme

Theme	Illustrative Quote
Missed prognostic cues and poor communication derail timely hospice	I don't know if anyone knew that she was close to death. If so, it would've been good for the family to have known that she was that sick and we could have been there, because she looked fine, we talked to her and thinking she was going to go home. If she was close to passing away, had we been informed anew, we may have even made the choice to take her home and spend the last days at home with her. (56, African American, Female, Cousin)
	If they looked back over her hospitalization over the last year, I think they would have known that we really do need to let this family know to start thinking this way. It's called planting the seed. (69, White, Female, Child)
	It certainly could have been explained differently—maybe that would’ve got us to come around faster. (52, White, Male, Child)
Hospice as both a loss and a relief	He said, “Baby, I ain't seeing my doctor. My lung doctor, my heart doctor.” I said, “Baby, you're on hospice. You don't have to see them doctors no more.” He said, “I need to see them doctors.” So, they made it where he can still see his doctors. […] And he was a veteran, so even though they wasn't supposed to, they still let him see them. (56, African American, Female, Spouse)
	He knew he was dying, and hospice was reminding him of it every time they came. (56, African American, female, spouse).
	I felt like hospice helped me more than him. (56, African American, Female, Spouse)
	So right after that, or right about then, they're talking hospice. And so in her mind, she's like, "Wait. They're just talking about doing some surgery that might make me feel better. Now they're like hospice. So we're not doing anything to try to improve whatever your conditions are." So that was kind of weird too. But maybe just it's hard to wrap your head around, kind of feel like you're throwing in the towel with hospice. (52, White, Male, Child)
Home is the ideal, but hospital is the default	He wanted to be there where machines would be there. Where it won't be at home, but as far as the passion part and just the caring part, the nurses didn't have to do nothing for my husband when my husband was in the hospital, none of them. I told them ‘I got it.’ I bathed him. I did everything for him. (58, African American, Female, Spouse)
	I feel that she would've wanted to be at home around her family and friends, or just her family, versus in a hospital room alone. (56, African American, Female, Cousin)
	Looking back at it, would you make the same decision about the end of her life and the care she received? Yeah, I think so. She did want to be at home, and so that was important to her. And so it was important to us. She didn't want to be in a hospital bed or in a facility, or something like that. She was content to be in her own apartment, because she had pictures of grandkids and things like that. And she was fine with that.” (52, White, Male, Child)
Financial realities shape end-of-life decisions	To get a higher level of service, you basically have to give over all of your assets. But, for someone who's worked all their life to build up something, you're trying to leave the little that you do have. So he needed more full-time care of just someone else to help me. But in order to to do that, we had to do Medicaid because I could not afford it. Or you just do palliative care, where it's like, "We're not trying to do anything else." So then that's when insurance will pay for more. So, the options are… Neither are good. (41, African American, Female, Child)
	I feel like they were not honest. I don't know what they were trying to do there. I don't buy that they didn't know that he was dying. I don't know if there just wasn't room in the hospice. They were very pushy with who they wanted him to get hospice care through. So I don't know if there was a contract or something that they got incentives for, because I've learned all of that too. But yeah, I think the honesty would've been just I mean a huge piece, or as to how bad he's doing. And I had thought about pulling him out of there, but I didn't know what to do because you sit and wait for… And this is also because he was on Medicaid or Medicare or whatever it is, I forget. But you wait for the place to open. And then they all have horrible reviews, and it's like you don't even know what you're going to do. (39, White, Female, Daughter)
	If I had the money, he'd be at home with me. (70, African American, Female)
Hospice does not always fit the realities and needs of COPD	They said, “Whenever you need us, we'll be there.” I'm sure hospice, they’re thinking this is a three-week engagement. And so, maybe in a short span of time, when someone is dying fast, that yeah, they're there when you need them. But for her, I guess they learned quickly that she was not dying in three weeks. So maybe they were like, "Who knows? This lady could go on for months, so we're not just going to jump every time she calls.” (52, White, Male, Child)
	Then when hospice came, started coming, they wasn't doing enough. Oh, girl. When I tell you, he was like, "I'm calling the ambulance. They ain't doing nothing for me." (56, African American, Female, Spouse)

Missed prognostic cues and poor communication derail timely hospice

Caregivers described how limited prognostic awareness, emotional avoidance, and inconsistent clinician communication left them unprepared for timely EOL decisions. Many said no one clearly communicated that death was approaching, even as functional status declined and hospitalizations increased, leaving families expecting recovery rather than preparing for rapid decline. Conversations about avoiding life-sustaining treatments often occurred during hospitalizations rather than through ongoing outpatient planning.

A readiness gap emerged, with families lacking the information needed to recognize approaching EOL (Figure 1). Inconsistent communication caused confusion: clinicians reassured families about improvement, only to recommend hospice weeks later. Many described crisis-driven transitions, including recurrent breathing episodes and 911 calls, that prompted hospice discussions. Misunderstandings that hospice was limited to facilities or the final days further widened this gap. Caregivers recommended earlier, clearer explanations, including framing hospice as a flexible service that could be initiated and discontinued if goals changed.

Figure 1.

Caregiver pathways contributing to the readiness gap in end-of-life decision-making in COPD.

Hospice as both a loss and a relief

Accepting hospice often felt like “throwing in the towel” after years of fighting to preserve health and independence. Caregivers described difficulty shifting from active treatment to comfort-focused care, particularly when patients were still taking familiar medications or seeing their usual doctors. Some described hospice visits as a painful reminder of dying.

At the same time, hospice brought relief from physical, logistical, and emotional burdens. Families valued reduced treatment burden, symptom management for breathlessness and anxiety, and support with oxygen, medications, and bathing.

Home is the ideal, but hospital is the default

Most caregivers shared that their loved one would have preferred to die at home, describing home as a place of comfort, familiarity, and control. However, hospital or facility deaths often occurred by default, driven by medical crises, limited caregiving resources, and structural barriers such as inaccessible housing. Some caregivers recalled that only facility-based hospice was offered. In some cases, families faced discordant preferences: patients wanted to remain home, while caregivers felt unable to manage home care. Many expressed regret about unwanted hospital deaths, whereas those who achieved home deaths expressed none.

A minority of caregivers noted that some decedents preferred the hospital setting, finding reassurance in access to medical care and equipment. When families could remain actively involved in caregiving, even hospital settings could preserve the connection and comfort decedents sought at the EOL.

Financial realities shape end-of-life decisions

Cost shaped decisions about where and how patients died. Some caregivers said that with adequate resources, their loved one would have died at home. Many caregivers described trade-offs between unpaid caregiving, hiring private aides, or facility placement. Private in-home help was often unaffordable, while hospice was typically covered.

As a result, hospice was often chosen out of financial necessity rather than preference, leading to disappointment when support fell short of expectations. Caregivers who hoped to keep loved ones at home described needing extensive, unaffordable assistance while facing lost wages or job insecurity. In contrast, comprehensive insurance coverage eased financial anxiety by fully covering hospitalizations and medications.

Several caregivers noted that clinicians rarely discussed the financial implications of EOL options, leaving families to navigate insurance rules and hidden costs on their own. Financial strain also eroded trust, with some questioning whether clinicians or facilities had incentives to promote certain hospice agencies.

Hospice does not always fit the realities and needs of COPD

Families wanted a more responsive nursing presence, respiratory symptom management, and physical therapy to maintain function. Some said the limited number of home visits felt inadequate given how much hands-on help patients required, and that they still performed most caregiving tasks: monitoring oxygen, assisting with transfers, and managing breathing crises. Caregivers also emphasized a disconnect between assurances of 24/7 availability and the reality of delayed responses, especially when patients lived longer than expected.

Discussion

We identified a readiness gap, in which bereaved caregivers often lacked information, emotional preparedness, and system-level support to recognize when hospice was appropriate in COPD. Financial constraints and limited home support further shaped where and how patients died. Once enrolled, hospice eased physical and logistical burdens but required relinquishing access to trusted clinicians and hospital-based care during exacerbations.

Our findings suggest that delayed hospice use in COPD stems from unclear prognostic communication, misconceptions about hospice, and a mismatch between hospice structures and the prolonged, crisis-prone illness course. These findings extend prior research showing that individuals with COPD are less likely to receive hospice and tend to enroll later than those with cancer. ^9,23 Our study illuminates why: the fluctuating COPD course complicates prognostication, and the prolonged need to manage dyspnea crises and oxygen dependence at home exposes limitations in traditional hospice structures.

Strengths include purposive sampling of a socio-demographically diverse cohort, with half identifying as Black, and rigorous qualitative methods that enhanced trustworthiness. A single site may limit generalizability, although caregivers were recruited from three different clinics. The modest response rate may introduce selection bias. Retrospective accounts may cause recall bias, although enrollment was limited to deaths within the prior year.

Caregivers recommended that clinicians frame hospice as a flexible, supportive service that can begin early and be discontinued if goals change, clearly explain the level of support it does or does not provide, and correct misconceptions that hospice requires facility-based care. At the system level, policies should adapt hospice for non-cancer disease, including longer enrollment periods, home-based supportive services, and concurrent care, which may serve as a psychological bridge for families reluctant to forgo disease-directed treatment. ²⁴ These adaptations would align hospice care with the lived experience of families facing advanced respiratory illness.