family perceptions of quality of hospice care in the nursing home
TRANSCRIPT
Accepted Manuscript
Family Perceptions of Quality of Hospice Care in the Nursing Home
Deborah Hwang , ScB Joan M. Teno , MD, MS Melissa Clark , PhD, MS RenéeShield , PhD Cindy Williams , BA David Casarett , MD, MA Carol Spence , RN, PhD
PII: S0885-3924(14)00249-8
DOI: 10.1016/j.jpainsymman.2014.04.003
Reference: JPS 8667
To appear in: Journal of Pain and Symptom Management
Received Date: 23 January 2014
Revised Date: 4 April 2014
Accepted Date: 29 April 2014
Please cite this article as: Hwang D, Teno JM, Clark M, Shield R, Williams C, Casarett D, Spence C,Family Perceptions of Quality of Hospice Care in the Nursing Home, Journal of Pain and SymptomManagement (2014), doi: 10.1016/j.jpainsymman.2014.04.003.
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Original Article 14-00032R1
Family Perceptions of Quality of Hospice Care in the Nursing Home
Deborah Hwang, ScB, Joan M. Teno, MD, MS, Melissa Clark, PhD, MS, Renée Shield, PhD,
Cindy Williams, BA, David Casarett, MD, MA, and Carol Spence, RN, PhD
Brown University (J.M.T., M.C., R.S., C.W.) Providence, Rhode Island; University of
Pennsylvania (D.C.), Philadelphia, Pennsylvania; and National Hospice and Palliative Care
Organization (C.S.), Alexandria, Virginia, USA
Address correspondence to:
Joan M. Teno, MD, MS
121 South Main Street, Box G-S612
Providence, RI 02912, USA
E-mail: [email protected]
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Abstract
Context. Nursing homes (NHs) are increasingly the site of hospice care. High quality of
care is dependent on successful NH-hospice collaboration.
Objectives. To examine bereaved family members’ perceptions of NH-hospice
collaborations in terms of what they believe went well or could have been improved.
Methods. Focus groups were conducted with bereaved family members from five diverse
geographic regions, and included participants from inner-city and rural settings, with over-
sampling of blacks.
Results. Twenty-eight participants (14.8% African American, mean age 61.4 years)
identified three major aspects of collaboration as important to care delivery. First, the majority
(67.9%) voiced concerns with knowing who (NH or hospice) is responsible for which aspects of
patient care. Second, nearly half (42.9%) stated concern about information coordination between
the NH and hospice. Finally, 67.9% of participants mentioned the need for hospice to advocate
for high-quality care rather than their having to directly do so on behalf of their family members.
Conclusion. The important concerns raised by bereaved family members about NH-
hospice collaboration have been incorporated into the revised Family Evaluation of Hospice Care
(FEHC), a post-death survey used to evaluate quality of hospice care.
Key Words: Hospice, nursing home, quality care, family perception
Running Title: Quality of Hospice in Nursing Homes
Accepted for publication: April 29, 2014.
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Introduction
Nursing homes (NHs) are an important site of death in the United States, with more than
one of four adults dying in the NH setting (1). Since the 1986 extension of the Medicare Hospice
Benefit to NH residents, NHs are increasingly serving as the site of hospice care. From 2005 to
2009, the number of Medicare hospice beneficiaries in NHs grew by 40% (2). By 2012, 17.2% of
all hospice patients died in the NH setting (3). Existing research recognizes problems with
collaboration between the hospice and NH as a major barrier in delivering high-quality care for
NH residents at the end of life (4-7).
In its 2013 final rule-making for long-term care facilities, the Centers for Medicare and
Medicaid Services (CMS) emphasized hospices’ need to collaborate with NHs in order to ensure
that hospice patients receive the same high quality of care in NHs as in their personal homes (8).
Given this CMS final rule, our goal is to measure the quality of NH-hospice collaboration by
adding on to an existing instrument for measuring quality of hospice care. The Family
Evaluation of Hospice Care (FEHC) Survey is a National Quality Forum-endorsed instrument
that the majority of hospices now use on a voluntary basis to monitor their quality of care. As a
first step to developing a new module, we conducted focus groups with a diverse population of
bereaved family members to examine from their unique perspectives the successes and
shortcomings in the care provided by hospices in the NH.
Methods
Focus groups are a useful method for collecting qualitative data on complex concepts,
such as issues in the quality of end-of-life care. This qualitative method allows for solidifying of
theoretical concepts with specific quotations from individual participants, while potentially
allowing researchers to analyze interactions among group participants (9-10). Between
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December 2010 and May 2011, five focus groups were conducted with bereaved family
members of patients who died with hospice in the NH; these sessions took place throughout the
northeastern, southern, and southwestern parts of the U.S. Family members were first contacted
between six and 12 months after the patients’ deaths, through a letter describing the study’s goals
and terms of participation. They were then contacted via telephone approximately two weeks
after receipt of the letter to screen for eligibility and determine interest in participating in a group
discussion.
The focus group discussions were based on a moderator’s guide designed to elicit family
members’ perceptions of hospice care in NHs. Within this overall goal, a main focus of the
moderator’s guide was to explore the bereaved family members’ observations of the coordination
of care between NH and hospice. Focus group participants were prompted to tell their stories
through open-ended questions such as:
• What were some good and bad experiences in the NH before hospice got involved?
• Once hospice got involved in the patient’s care, what went well? What could have been
improved?
• How well did the NH and hospice staff members interact with one another?
• Between the NH and hospice, how well was care was coordinated? What could have
been improved?
Each focus group discussion lasted approximately 90 minutes, after which each participant was
compensated $50 for his or her time. The discussions were moderated by the study’s co-
investigator (M.C.) and observed by the principal investigator (J.M.T.) and research assistant
(C.W.), both of whom made independent notes of their observations. Focus group participants
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were informed that this study was part of the research team’s ultimate goal of improving patient-
centered and family-focused hospice care.
All focus group discussions were audiotaped and transcribed. The transcripts and notes
from all sessions were analyzed to identify major themes of concerns that participants repeatedly
voiced, citing both positive and negative experiences. The main goal of analysis was to identify
those aspects of NH-hospice collaboration that participants seemed to believe most impacted
quality of care for their deceased family member. Content analysis was conducted by J.M.T. and
D.H. After review of the transcripts, J.M.T. outlined three major themes of concerns and
discussed these themes with the team of co-authors; areas of disagreement were resolved through
group discussion to reach consensus. After identification of the major themes, all transcripts
were reviewed once more by D.H. to quantify the proportion of participants who brought up
experiences or concerns corresponding to each category. This project was approved by the
Institutional Review Board of Brown University.
Results
A total of 28 focus group participants were recruited from five hospices. These hospices
varied in location (rural to urban), minority composition (one with inner-city minority
population), and geographic region (New England, Mid-Atlantic, South-East, and South-Central
locations of the U.S.). Participants were family members of hospice patients who died with
receipt of hospice services in the NH. Table 1 characterizes the participants.
Three predominant themes of concerns emerged from the analysis: 1) clear delegation of
responsibilities between NH and hospice staff regarding specific tasks comprising patient care;
2) information coordination between the NH staff and hospice staff; and 3) bereaved family
members’ need for hospice to act as an advocate for the patient and family, as well as a
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moderator helping resolve concerns with the quality of care. Table 2 summarizes the number of
sites and participants who verbalized positive or negative experiences corresponding to each of
the three themes.
Theme 1: Clear Distribution of Responsibilities in Tasks for Patient Care
Family members at all five sites identified the coordination of care between NH and
hospice as an important determination of the quality of end-of-life care. The predominant
concern was the perception that the NH would avoid providing care, and instead wait for hospice
staff to provide that care. These concerns often focused on bathing or changing an incontinent
patient, as illustrated by this quotation:
When my mother come from the hospital and they was setting up,
hospice for her, they-the people, you know, the workers at the
nursing home were waiting for hospice to come in to do their work
so they didn’t want to do anything anymore and they let my mother
stay in the bed wet and her bag leak and so you know, the head,
they fired three people. So when hospice came in, I was really
pleased because they, you know, they kept my mother clean. They
came, you know, came in every single morning and they bathed
her. (58 y/o African-American woman whose mother died on
hospice services in an inner-city NH)
A second illustrative quotation focuses on the changing of a colostomy bag in a
dying cancer patient, and further illustrates the distress caused to both the patient and
family member when caregiving tasks are not clearly delegated between NH and hospice
staff:
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My situation was that the NH staff would deliberately not do
something if they knew that that was a time that we could expect
hospice to come [Mod: Okay.] so they used it as an opportunity not
to have to deal with my mother, which I wouldn’t let them get
away with because who was my check going to? It was going to
the NH. (52 y/o white woman recalling her role in advocating for
her dying mother)
The participant then stated her concerns with the NH nurse not changing the colostomy bag:
…for example, she had colon cancer so the NH would never
change her bag. They always waited for hospice. Well, give me a
break. You know, change her bag.
In contrast, there were stories of successful collaboration that resulted in “seamless integration”
between the NH and hospice staff:
At [NH] they’re just an integrated team. [Mod: Okay.] They, [NH]
provides them, hospice with an office and they’re part of the
overall care team and I viewed it as seamless integration between
the hospice and the [NH] nurses. (64 y/o son recalling the dying of
his mother in a NH)
Theme 2: Information Coordination Between NH and Hospice Staff
Participants at all five hospice programs raised concerns of information coordination
between the NH and hospice staff. As voiced by one participant, hospice did not have the “pulse
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on [the patient] day to day,” and the family member did not know whether to raise concerns to
the hospice or to the NH:
Personally, I knew who was who. [Mod: Okay.] But it was
difficult to know who to raise issues or concerns to. [Mod: Okay,
can you speak a bit more about that?] Ahh, I can’t. I was trying to
rack my brain the last few days. He passed away in April so it
kind of gets, what I remember, I was, I kind of sensed that hospice
didn’t quite have their pulse on his day to day, like they would
come and talk to him, interview him or whatever, just chat with
him, always seemed pretty good. But he had moments of real
confusion and anguish because his confusion. And they didn’t
seem to see that and I don’t blame them. (68 y/o participant whose
father died in a NH from a cerebrovascular accident)
This is contrasted with the experience of an 81-year-old wife of a cancer patient who died
in a NH. The wife described a hospice case manager who was aware of the medical decisions
made for the patient and would explain them to the family:
However, being a large facility, I didn’t know many, how many
patients she was seeing. His regular nursing care was done by the
[NH name] staff. However, hospice seemed to know everything
that was going on all along and the one time I did find hospice
information valuable was my doctor came, our private doctor came
to see [name] and then when he left, one of the [NH name] nurses
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said, they’ve taken his, some of his medicines away and I asked
which ones. Well, they happened to be his two main heart
medications. And so of course, I had a question about that and I
was able to go out and ask the hospice nurse why they had done
that and she explained to me…
Theme 3: Hospice’s Role in Advocating for the Patient and Family and Resolving Concerns
With Quality of Care
Families often take on the role of advocating for their loved ones in the NH setting (11).
Family members voiced the burden of such responsibility, expressing a need for hospice to take
on more of this advocate role on behalf of patients and families. According to a 60-year-old
African American caring for his aunt who died in an inner-city NH with hospice services:
I think part of the problem is this here like, what authority do the
hospice have over their patients once they put them in these
nursing homes? Because it seems that some of these nursing
homes don’t like that authority that comes in. In other words, it’s,
you’re in our place. Y’all coming in and telling us how to do
certain things, a lot of people don’t like that.
A similar concern was echoed by a 52-year-old daughter whose mother died in a NH after a
hospitalization that was unwanted:
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And really people in that position [as caregiver], well, I think most
people in that position, don’t have the energy to devote to sorting
stuff like that out because you’re focusing on your loved one and
so I found that to be frustrating… [My mother] fell and we had
DNRs and all that kind of stuff out the kazoo but for whatever
reason, she was rushed to an emergency room and they start, you
know, doing all these things to her and I’m running, I’m running to
the place where they told me she was but because my mother was
blind in one eye and they failed to notice that, they thought her
eyes were unresponsive so they took her to a head trauma hospital
thinking that that was, even worse… So I’m, I’m at the other
hospital and “How can I possibly beat the ambulance?” So you
know, go to the other [hospital] and I’m running with my DNRs
and you know, my power of attorney and all this stuff… And
hospice afterwards goes, “Wow, we really wished we could have
helped intervene in that case.” And I’m like, “Gosh, me too.” You
know, because they were squeezing the last bit of blood my mother
had in her body out to try to do some blood tests, which was
stupid. So I just felt like hospice wasn’t powerful enough because
they were on my side but they weren’t powerful enough.
Yet, there were also stories of hospices quickly intervening when the family member reported a
concern and helping to rectify the situation by advocating for the dying patient and family:
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But the one crisis that we had, the skilled nursing section had a
substitute nurse who looked in on my mother and saw that she was
sleeping and then never went back and so when I called to check
on her in the morning, she was again experiencing pain, frightened,
alone, except for the woman in the bed next to her and I was
actually talking to the woman in the bed next to her who said,
“She’s frightened.” And I said, “Why?” And she said, “Well, I
haven’t seen a nurse.” And I immediately called hospice cause I
was really annoyed about this. I was-I was beyond annoyed. And
I’m only about 15 minutes away from the facility where my
mother was. Hospice beat me there… As I’m walking down the
hall to the nursing director and I hear the [hospice] nurse saying,
“What is it you don’t understand about hospice?” And she’s got
my mother’s records. The chaplain was already in with my
mother. The social worker arrived along with me. I mean, it was,
I don’t even know how they got there that fast. But they were and
that was the end. I never had another, they were wonderful. (58-
year-old woman whose mother received hospice services in the
NH)
Discussion
Nursing homes increasingly serve as the site of hospice care (1). With two separate
entities partnered in delivering hospice care in the NH setting, collaboration is a key determinant
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in delivering quality care for patients and their families. Multiple studies report on the
ideological, as well as pragmatic, challenges for NH and hospices in achieving optimal
collaboration (4-7). Parker Oliver and colleagues, for example, have investigated the use of
telemedicine as a tool for improved communication and collaboration among all those
participating in the care of the hospice patient (12). Other studies report on the many benefits
that successful NH-hospice collaboration brings to NH residents and their families, including
improved symptom assessment and management, as well as prevention of end-of-life
hospitalizations (13-15).
In a 2012 study, Williams and colleagues found that family caregivers in long-term care
facilities end up assuming much of the direct and indirect tasks that are assumed to be the
responsibility of hospice or NH staff. In fact, 40% of family caregivers provided care like
bathing, toileting, or dressing (16). Although close involvement of family members could be a
positive finding, these heavily involved caregivers also reported higher role strain, corroborating
other studies’ finding that family caregivers’ perspectives must be gathered on their desired role
and need for support (17-21). Importantly, the high assumption of caregiving burden by families
also calls into question whether NH and hospice staff are successfully collaborating to get tasks
adequately and timely accomplished. Our study attempted to understand from the unique
perspective of family members the key factors of NH-hospice collaboration that contribute to
quality hospice care in the NH.
Through focus groups with bereaved family members, we identified three important
aspects of successful care delivery: clear delegation of tasks and responsibilities, information
coordination between NH and hospice staff, and hospice’s important role as an advocate for the
patient and family. The ultimate goal of this study was to develop questions for a new module of
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the FEHC survey, which will serve as a performance measurement tool to ensure quality care for
the increasing population of patients receiving hospice services in the NH setting. Table 3
includes the survey items resulting from analysis of the focus groups; items will be tested in the
validation phase of this study.
First, families valued having a clear idea of which tasks each entity (NH or hospice) was
responsible for. In its 2013 final rule, CMS noted that delivery of uncoordinated, overlapping, or
conflicting services may arise secondary to the fact that similar basic tasks are covered in two
ways, by the Medicare Hospice Benefit to hospices and by third-party payers to NHs (8). Our
participants voiced how hospice presence in the NH can actually lead to a complete lack of
certain basic services, as NH staff would purposefully wait around for hospice to come and
attend to caregiving tasks like changing colostomy bags or bathing.
Second, information coordination was a major concern for bereaved family members.
High-quality end-of-life care is dependent on a shared care plan between the NH and hospice, as
well as on the sharing of information regarding the patient’s clinical condition and clinical
problems that can be expected while dying. Often, hospice is not in the NH facility on a daily
basis; therefore, effective communication between NH and hospice staff is imperative to update
and coordinate patient care, especially when changes in the patient’s condition occur. With two
caregiving entities providing care and not necessarily communicating effectively with each other,
family members expressed frustration at the added burden of serving as a channel through which
the patient’s needs would have to be relayed. NH and hospice providers themselves also have
identified improved communication as the key means to improving NH-hospice collaboration in
delivering quality end-of-life care (22). One study by Price and Lau used interviews with end-of-
life health care providers to investigate how information coordination contributes to quality of
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care for dying patients (23). A few other studies have explored the role of information
coordination, but exclusively in the context of coordination of care during transitions through
different non-hospice care providers (24-25). Our study suggests the need to further characterize
the benefits of information coordination specifically in the context of hospice care in NHs.
Third, families emphasized the important role of hospice in advocating for the patient and
family in the NH setting. It is already known that family members are often forced to make
personal and professional sacrifices to actively take on the advocate role for family members in
the NH (7). Many family members in our focus groups perceived the NH as an understaffed
facility where they themselves had to actively advocate for adequate care for their family
members. Our finding is consistent with that of multiple previous studies, which emphasized the
important role of hospice as an advocate for patients and their families (26-27).
There are important limitations that should be acknowledged in this study. First, only
explicitly stated opinions and voiced affirmations were considered for counts as focus group
discussions were only audio-taped. Second, typical of a qualitative study, we used persons who
volunteered for participation. However, 28 participants and five different focus groups are robust
numbers for qualitative research. Also, we were able to ensure sociodemographic diversity in our
focus group participants, with an over-sampling (14.8%) of African Americans. Moreover, the
five participating hospice programs were varied in geographic location across the U.S., and
included programs in rural as well as inner-city settings. Given that this is a qualitative study, we
believe that this diversity adds strength to our findings.
Given the increasing number of hospice beneficiaries in NHs and the recognized
importance of NH-hospice collaboration, we aimed to develop a survey tool to measure quality
of care for those individuals receiving hospice services delivered in NHs. Focus groups with a
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diverse sample of bereaved family members helped us identify three factors that influence the
quality of hospice care in the NH, which we used to develop questions to add as a new module to
the FEHC survey. The next phase of this study is to validate the new module in these hospice
programs to ensure the advancement of more person- and family-centered hospice care in the NH
setting.
In order to achieve improved NH-hospice collaboration and perform better on our survey
tool, experts are suggesting key ways for hospices to work more synergistically with NHs. For
example, Miller proposes that hospices change their infrastructures to better accompany the
unique NH setting (e.g., hiring nurses with NH backgrounds, creating teams dedicated to NH
care). She also stresses the importance of NH and hospice administrators’ acknowledgement of
their different approaches to care, while working towards alignment of their cultures and
philosophies regarding care (28-29). It is our hope that our NH-specific survey module will help
measure, and ultimately advance, NH-hospice collaboration for patient-centered, family-focused
hospice care for NH residents.
Disclosures and Acknowledgments
This project, Family Evaluation of Hospice Care, was funded by grant no. AHRQ
1R01HS019675 to principal investigator Joan M. Teno, MD, MS. The authors declare no
conflicts of interest.
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REFERENCE 22?
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Table 1. Focus Group Participant Characteristics
Total Number of Participants (n)
28
Female
67.9%
Average Age
61.4 yrs.
African American
14.8%
Relationship to Patient
Spouse 14.3%
Child 67.9%
Other 17.8%
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Table 2. Number of Sites & Participants With Major Concerns
Theme
Number of Sites,
of 5 total (%)
Number of Participants,
of 28 total (%)
Who is responsible for what?
5 (100)
19 (67.9)
Concerns with information coordination
5 (100)
12 (42.9)
Hospice’s role in advocating for the patient and resolving concerns with the quality of care
4 (80%)
19 (67.9)
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Table 3. FEHC Survey Items by Theme
Theme Normative Statement Survey Item
Clear distribution of responsibilities in tasks for patient care
Hospices should ensure that NH residents and/or their families are provided with clear explanations of which services will be provided by whom, and that NH residents and families’ needs are met.
• How often were the patient’s personal care needs – such as bathing, dressing, and changing bedding – not taken care of because the nursing home staff expected the hospice staff to do the personal care?
• Were you provided with enough information from hospice to know which concerns to discuss with the nursing home staff and which concerns to discuss with hospice?
Concerns with information continuity
Timely communication to update the caregiver about the patient’s condition, what to expect, and what he/she can do. Hospice and NH work together as a team so both are informed about the patient’s condition and can develop a shared care plan.
• How often did information about the patient’s differ between the nursing home staff and the hospice team?
• How often did the nursing home and hospice staff work together as a team?
Hospice’s role in advocating for the patient and resolving concerns with the quality of care
Hospice staff listens to concerns of quality and provides a timely response to those concerns. Hospice advocates for the best possible quality of life of the dying patient.
• How often was the hospice team aware of the patient’s condition?
• After hospice became involved, how often did you feel that you were on your own to advocate for the patient?