- Email: [email protected]
Caring for Dying Patients in the Nursing Home: Voices From Frontline Nursing Home Staff
Accepted Manuscript Caring for Dying Patients in the Nursing Home: Voices from Frontline Nursing Home Staff John G. Cagle, PhD, MSW, Kathleen T. Unroe, MD, MHA, Morgan Bunting, BS, Brittany Bernard, BS, Susan C. Miller, PhD, MBA PII:
S0885-3924(16)30766-7
DOI:
10.1016/j.jpainsymman.2016.08.022
Reference:
JPS 9289
To appear in:
Journal of Pain and Symptom Management
Received Date: 6 June 2016 Revised Date:
24 August 2016
Accepted Date: 26 August 2016
Please cite this article as: Cagle JG, Unroe KT, Bunting M, Bernard B, Miller SC, Caring for Dying Patients in the Nursing Home: Voices from Frontline Nursing Home Staff, Journal of Pain and Symptom Management (2016), doi: 10.1016/j.jpainsymman.2016.08.022. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
ACCEPTED MANUSCRIPT Dying in the Nursing Home
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RUNNING TITLE: Dying in the Nursing Home
Caring for Dying Patients in the Nursing Home:
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Voices from Frontline Nursing Home Staff
John G. Cagle, PhD, MSW1
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Kathleen T. Unroe, MD, MHA2,3 Morgan Bunting, BS1
Brittany Bernard, BS2,3
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Susan C. Miller, PhD, MBA4
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University of Maryland, Baltimore, USA Indiana University Center for Aging Research, Indianapolis, USA 3 Regenstrief Institute, Inc., Indianapolis, USA 4 Brown University School of Public Health, Providence, USA 2
Tables: 1 Figures: 2 References: 34 Word Count: 5,028
Address correspondence to: John G. Cagle, Ph.D., Assistant Professor, University of Maryland, Baltimore, School of Social Work, 525 West Redwood Street, 3W13, Baltimore, MD 21201; phone: (410) 706-6106; e-mail: [email protected]
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ABSTRACT Context: Nursing homes are an important site for end of life care, yet little is known about the perspectives of the front line staff who provide a majority of this care.
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Objective: To describe, from the staff perspective, positive/negative experiences related to caring for dying residents.
Methods: Qualitative analysis using survey data from staff working in 52 Indiana nursing
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homes.
Participants: 707 frontline staff who provide nursing, nurse aide and social work services
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responded to open-ended prompts. Study data included responses to open-ended prompts asking participants to describe one positive experience and one negative experience caring for a dying patient. A thematic content analysis was conducted using the constant-comparative method.
Results: Respondents were largely female (93%), white (78%), 31-50 years (42%), and
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53% had >5 years of NH work experience. Experiences were described from three perspectives: (1) first-hand experiences; (2) observed experiences of dying patients; and (3) observed experiences of family members. Selected themes for positive experiences
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include: creating close bonds; good patient care; involvement of hospice; being prepared; and good communication. Selected themes for negative experiences
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consisted of: challenging aspects of care; unacknowledged death; feeling helpless; uncertainty; absent family; painful emotions; and family discord. Conclusion: Findings reveal the richness and many complexities of providing end of life care in nursing homes, and have implications for improving staff knowledge, coordination of care with hospice, and social support for patients. Key words: Long-term care; hospice; palliative care; person-centered care; quality of dying; death Accepted for publication: August 26, 2016.
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INTRODUCTION Nearly 1.5 million people reside in nursing homes (NHs) in the United States (1) and approximately 30% of deaths among older adults (65+ years) occur within the NH
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setting (2). Past research has identified a number of important concerns about the quality of care for dying NH residents including inconsistent assessment and treatment of pain, (3) lack of attention to resident quality of life, (4) and missed opportunities for
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patient-centered decision-making (5). The need for high quality end-of-life (EOL) care in NHs is projected to increase in lock step with the fast growing number of older adults in
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the U.S (6,7).
NHs rely on frontline NH staff to provide hands-on care to patients. Previous studies suggest that NH staff may not be properly trained and supported to care for dying patients (8,9). The traditional model of NH care focuses on rehabilitation and restoration (10). However, when a patient with life-threatening illness nears EOL, staff
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must often make a difficult shift from a restorative approach to a model more consistent with palliative care (10,11). Good communication, comprehensive training in EOL care, and staff support may help NH staff facilitate this shift (12-14). In addition to staff
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communication, psychosocial support7 and previous experience with death and dying13 may also influence staff members’ comfort level with providing EOL care.
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There has been tremendous growth in the number of external hospice agencies providing services to dying NH patients in the U.S (15). However, among NH staff, there are mixed attitudes and receptivity regarding the value of hospice services in the NH (16). Dedicated investigation focusing on NH staff attitudes towards hospice is needed to understand the disconnect between some NH and hospice staff. Unroe et al. (2014) quantitatively analyzed NH staff perceptions about hospice and found that the majority viewed hospice as generally positive, but more beneficial for patients and families than for the NH staff themselves. The study also found that staff frequently reported poor
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communication between NH and hospice staff, which could contribute to poorly coordinated care, (17) and ultimately lower the quality of care for dying patients. Understanding NH staff perceptions about death and dying is critical to better
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understand and address the many challenges of providing high quality EOL care in the NH environment. Although a substantial proportion of U.S. deaths occur in NHs, few
studies have qualitatively explored frontline staff perceptions about EOL experiences in
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the NH and the various factors that contribute to quality of dying for residents. This study addresses this knowledge gap. As part of a larger study examining perceptions of staff
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towards palliative care and hospice, (17) we conducted a qualitative content analysis to identify recurring themes related to positive and negative descriptions of experiences caring for dying patients.
METHODS
Design
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This qualitative study used open-ended survey data from frontline NH staff – including registered nurses (RNs), licensed practical nurses (LPNs), certified nursing assistants (CNAs), and social workers (SWs) – working in 52 facilities from two large NH
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chains in Indiana. Although survey items were identical, one chain was given hardcopies during a staff meeting while the other chain completed the same survey items using
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Survey Monkey, an online survey tool. Study procedures were approved by the Indiana University IRB. Measures
Survey measures asked about basic demographic information; general
knowledge, attitudes and opinions about EOL care in the NH; and to describe positive and negative experiences caring for a dying patient. Specifically, for this study we focused on responses to the following two prompts: 1. Describe a POSITIVE experience taking care of a dying patient.
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2. Describe a NEGATIVE experience taking care of a dying patient. Analysis
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Sample characteristics were summarized using frequencies and percentages. The survey response rate was computed based on the number of completed surveys versus the total number of staff given an opportunity to complete the survey. Open-
ended responses were initially coded for thematic content by the primary author and a
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working codebook was developed. The constant-comparative method (18) was used to identify recurrent/emergent themes within the data. Raw data were unitized using open
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coding. Coded excerpts with similar themes were grouped together. After the initial round of coding and categorization, findings were reviewed by Drs. Cagle and Unroe for corroboration and peer oversight.
Responses from a subsample of randomly selected cases (N=39, 5%) were reviewed and independently coded by three members (K.U., B.B., M.B) of the
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interdisciplinary (medicine, social work and gerontology) research team with >80% concordance. The team resolved conflicting themes/categorizations and revised the codebook accordingly. Direct quotes that encapsulated identified themes are presented
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as exemplars. In particular, we selected quotes that presented either multiple themes or especially rich detail about the concepts being described. All identifying content was
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changed or removed to preserve respondent anonymity. To ensure validity of results, preliminary themes and subthemes were reviewed and critiqued by a subsample of 15 staff members (4 RNs, 4 LPNs, 5 CNAs, and 2 SWs) from 4 of the participating facilities, 2 from each chain.
RESULTS As shown in Table 1, among the 707 participants who responded to the openended prompts, the majority were female (93%), white (78%), and 31-50 years old
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(42%). Respondents were largely frontline clinical staff consisting of CNAs (40%), LPNs (30%), RNs (15%), and SWs (4%). The sample was relatively seasoned as 53% had >5 years of NH experience. 4.6% of respondents reported they had not had a negative
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experience when caring for a dying patient. Overall, there were slightly more responses to the positive prompt (92.8%) compared to the negative prompt (86.4%). The full survey response rate was 71%.
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Staff members described experiences from one of three perspectives: (1) first-
hand accounts experienced by the respondent herself/himself (i.e., the experience was
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positive/negative for the staff member); (2) observed experiences of dying patients (i.e., the staff member considered the experience positive/negative for the patient); and (3) observed experiences of family members (i.e., the staff member viewed the experience as positive/negative for the family). Results are presented separately based on these three perspectives. Figures 1 and 2 provide a complete summary of identified themes
Positive Experiences
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and subthemes stratified by perspective.
First-Hand Positive Experiences
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When staff members described a positive experience they had while caring for a dying patient, eight themes emerged (Figure 1, column 1): honored to provide EOL care;
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creating close bonds, i.e., “being like family”; learning something; feeling appreciated; making a difference; supportive hospice involvement; being prepared (intellectually, emotionally and spiritually); and, good communication. One response from a CNA exemplified a number of these themes, including feeling honored, creating close bonds, learning something, and feeling appreciated: It is an honor to be the person taking care of a dying resident. Not only do you become closer with the patient’s family, but you also learn a lot about the past.
ACCEPTED MANUSCRIPT Dying in the Nursing Home Also it is about the only time a CNA feels appreciated and noticed. The families appreciate what we do! - CNA Multiple staff members reported having learned either new clinical knowledge or care-
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related skills while caring for a dying person. As one respondent phrased it: I learned a lot about how to simultaneously bring physical comfort to the dying person and emotional comfort to the family […] it was ultimately a positive
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experience because I truly knew we did everything in our power to make the resident's final moments as comfortable as possible. - RN
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Knowing that the care being provided had a beneficial impact on the dying patient (i.e., making a difference) was a recurring theme. Staff members reported feeling that they helped by being responsive to the patient’s need for supportive care by listening, providing a calming physical touch and presence, or “going the extra mile.” One staff member noted that acts of compassion can have a significant and beneficial impact on
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patient/family perceptions.
I’ve learned that the smallest act of kindness is greatly observed and needed by family and the residents. I’ve learned how to show compassion under pressure
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and fear. – CNA
When describing positive EOL care experiences, respondents frequently
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mentioned hospice. An LPN respondent discussed how she was grateful for hospice involvement because dying patients require specialized attention beyond what NH staff members can routinely provide. I’m always happy when hospice steps in and takes some of the workload off the nurse. Dying patients need one-on-one care and sometimes that can be hard when you have other residents. - LPN Being able to communicate well with patients, families and other care providers was another prevailing positive theme mentioned by staff. In particular, open and
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thorough communication was cited as important to facilitate care coordination (e.g., with physicians, hospice providers) and to educate patients/families about what to expect at EOL. As one RN shared:
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It was a positive experience to offer comfort and education to the family when they had fears about pain medications being addictive, and questions about
‘what happens next.’ It is a comfort to me, as well as the patient and family, to
Positive Experiences Observed in Dying Patients
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provide end of life care. - RN
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When respondents described positive dying experiences from the perspective of the patient, five major themes were identified (Figure 1, column 2): received good care; not being alone; suffering ended with death; hospice involved; and being prepared (physically, intellectually, and emotionally). Staff consistently remarked that it is critical for NH patients to receive good care at EOL. Good care included managing pain and
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symptoms (ensuring patients are “at peace”), preserving dignity and autonomy, giving careful attention to hygiene and basic needs, and maintaining a calm, secure environment. One staff member summarized several of these points in her response:
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Keeping the patient comfortable - maintaining family involvement. Being there for family support. Maintaining the patient’s dignity. – RN
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Good care was often provided by, or in concert with, hospice services: This particular patient was extremely grateful to hospice when they were able to get her pain at a sustainable level. The joy in her face from being in less pain made it a little easier for the family. The family was able to spend her last days with her in peace. - LPN Being intellectually, emotionally and spiritually prepared also emerged as an important theme. One staff member shared how residents’ awareness and acceptance that they are dying can help to make the experience a positive one:
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When the resident themselves are at peace and are ready to pass. I had a resident who was very excited to meet her Lord. [She] would joke and say ‘Dangit, I woke up again’ with a laugh. - Job Role Unspecified
that ends with death, one CNA shared an anecdote:
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Also related to patients being emotionally/intellectually prepared for death and suffering
There was a man who was ready to die and his family had come to terms with his
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death. The family had been prepared for his death, and he had too, so it was not a sad experience. It was sad he was dying but it was beautiful that the family and
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the patient expected it. Death is something that will happen to all of us at one point in time and it is nice to see a person ready to face what we all one day will with open arms and willingness. This man lived a full happy life with a beautiful woman who had passed away a few years before and he was ready to be with her. Even his last day he talked of a happy life and better times and the pain he
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was in was horrible -- he was ready to go to a better place. If every person could be comforted like this man and his family the world and death would not be so scary. – CNA
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Related to being prepared, multiple staff respondents mentioned that, for patients, being able to say “goodbye” was an important factor at the EOL. For example, a SW
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respondent stated:
Recently a long term resident elected hospice services at the hospital but wanted to ‘come home’ to the facility to pass away. He was able to say his goodbyes to staff, family, and friends before he passed and he and his family were at peace with the process. - SW
Positive Experiences Observed in Families Staff members also described positive aspects of EOL care in relation to family members. From this perspective, six core themes were identified (Figure 1, column 3):
ACCEPTED MANUSCRIPT Dying in the Nursing Home 10 being supported (emotionally and regarding decisions); involved (e.g., increased visits); knowing their loved one was free from pain; personhood/humanity acknowledged (by sharing stories, smiling, and laughing); hospice involvement; and being prepared (e.g.,
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family informed of prognosis and expected decline). One staff member recounted a story illustrating the importance of family presence at the EOL, and the benefits of supporting families, both adults and children, during their visits to see the patient in the facility.
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We had a resident that was passing and there were family and small kids here in their room. It was getting late. We had just cleaned up, changed and repositioned
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the resident and tried to make him comfortable. After that we got refreshments for the family and I made a tent out of blankets over the back of a recliner and made an area for the kids to lay down and watch movies to keep them happy and occupied in the time of stress for the family. They all liked it and it helped the parents be able to focus on their family member passing. - CNA
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Negative Experiences First-Hand Negative Experiences
When describing negative experiences caring for dying patients from their own
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perspective, staff member responses covered 12 themes (see Figure 2, column 1): witnessing distressing signs and symptoms; feeling helpless; being the target of
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resident/family/provider criticism; unacknowledged death (i.e., patient death either not properly memorialized or altogether ignored); not being present for the patient; challenging care; bad timing (e.g., unexpected death); hospice (involvement or noninvolvement); uncertainty; poor or challenging communication; painful emotions; and, family discord. Staff members were personally troubled when they witnessed distressing signs and symptoms, such as dying patients moaning in apparent discomfort. Others found physical deterioration (i.e., “withering”) upsetting. Distressing signs and symptoms also included affective responses such as seeing patients struggle with emotional pain
ACCEPTED MANUSCRIPT Dying in the Nursing Home 11 or fear. A few respondents noted that watching a patient exsanguinate, or witnessing the death itself (i.e., “seeing last breath”), was especially disturbing. One LPN described feeling helpless while caring for a resident who had clear
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and observable signs of discomfort because a contentious family refused treatment: Feeling like ‘my hands are tied’ during times when there are families in conflict over treatment or families are just not wanting anything done period. I had a
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family that did not want their mom given morphine despite she had every sign
and symptom of pain, they refused to let us treat her. I talked to them until I cried.
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It was no use, they said ‘she is out of it – she probably isn't in pain.’ - LPN Staff members routinely reported being the target of resident, family, or provider anger, blame and rudeness. In reference to being a target of undeserved criticism, one CNA shared:
When a patient that is clearly passing soon has family that become irrational and
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try to blame us for what is happening and not understanding why we cannot stop the inevitable. - CNA
Family discord was observed by several respondents as part of their negative
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experience, particularly when disagreements result in patient care inconsistent with patient preferences. One LPN encompassed these observations by reporting:
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When part of the family members want to change the care from what the resident had requested. - LPN
One respondent discussed how witnessing a protracted dying process or seeing residents face death alone was a negative experience: The worst experience for me is when they hang on for months and just wither away. It breaks my heart. Also, when they die with no family or anyone present -that is the ultimate worst for me. I don't think anyone deserves to die alone. CNA
ACCEPTED MANUSCRIPT Dying in the Nursing Home 12 Descriptions of painful emotions frequently accompanied respondent descriptions of negative experiences. These included instances of seeing family members in emotional pain, getting too attached to patients, profound “heartache” and grief, and difficulties
experience for her was the grief and emotional pain:
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maintaining an emotional distance. As one CNA shared, the most difficult part of the
The hardest part of taking care of a dying resident is the heartache that follows.
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We grow attached to people, and sometimes it can cause grief. - CNA
Although most respondents described hospice support favorably, some
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recounted frustration and disappointment when coordinating care with hospice agencies. A few reported that hospice providers “take over” patient care, even though NH staff want to remain involved – and are capable of doing so. Others reported having questions about overlapping roles with hospice providers. The importance of good communication between hospice and NH was a recurring theme, as well as the
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importance of smooth care coordination and being responsive to patient/family needs in a timely manner. As one LPN shared:
Many times the bringing together of outside forces can make the care of the
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patient difficult. Even though hospice is [available] 24/7- often you have to wait for a phone call to be returned, medications to be dropped off (when the patient
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is in need), or an order from a physician who may not always be available. As well as the fact of having to go through hospice in order to obtain all of this can cause delay in the care of a dying person, which becomes frustrating. - LPN
Negative Experiences Observed in Dying Patients When staff members described negative experiences they had witnessed among dying residents, nine themes were identified (Figure 2, column 2): being alone (e.g., absent family); privacy ignored; suffering (physical/emotional); receiving suboptimal
ACCEPTED MANUSCRIPT Dying in the Nursing Home 13 care; untimely death (e.g., too young); hospice (non-involvement or unresponsive); uncertainty (e.g., care preferences unknown); painful emotions; and, family discord. Respondents echoed a desire for patients to not be alone when dying; and that
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family members should be present and involved. Watching a patient suffer in physical, emotional, or spiritual distress was often mentioned when describing negative
experiences. Pain, dyspnea, agitation, and delirium, in particular, were cited as
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contributors to physical suffering. One LPN shared the following story, an example of spiritual or existential suffering:
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My resident fought death, yelling and cursing as he was passing. He was screaming and had the look of horror on his face. I’ve never forgotten this resident as he often cursed God for the way his life turned out. - LPN Multiple respondents shared their observations about how suboptimal care can contribute to an adverse dying experience including, instances when the patient was not
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checked frequently enough, was left wet, or received poor oral care. Suboptimal care also included under-treatment (e.g., oxygen or pain medicine was needed, but not provided) and over-treatment. Examples of overtreatment included unnecessary
last days.
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nutrition/hydration, repeated hospitalizations, and futile restorative care in the patient’s
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Family discord also emerged as an important theme. When disagreements center around treatment options, family disputes can create uncertainty about the current course of treatment, dilemmas for staff, and care regimens that conflict with the patient’s needs or preferences. A SW described how family discord, ignoring a patient’s treatment preferences and witnessing distressing symptoms created a negative experience for everyone involved in the situation: When a resident was dying and family were arguing over whether or not to place a feeding tube. When the resident was alert, before he was in the process of
ACCEPTED MANUSCRIPT Dying in the Nursing Home 14 dying, he had made it clear that he did not want a feeding tube. Family members could not agree and one family member finally had a feeding tube placed. It was difficult to watch the pain and anxiety it caused to all involved. - SW
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Conflict between family members can also distract from the supportive care that the patient needs. An LPN shared a case where family seemed more interested in
divvying up the patient’s possessions, rather than being present for her in her final dying
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moments.
The patient was taking her last breaths and the family was fighting in the patient’s
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room over her belongings. - LPN
Non-enrollment in hospice, or absence of hospice staff when dying residents have distressing symptoms such as dyspnea and fear/anxiety, was also viewed to have a detrimental impact on the dying experience. An LPN reported:
When an alert patient on hospice had a sudden condition change. She was
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struggling to breathe and knew that she was dying. She was fearful and it was difficult to calm or comfort her. She died before hospice services were able to make it to the facility. - LPN
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In general, the absence of hospice services contributed to negative perceptions of the resident’s dying experience. In some cases, staff members reported that residents
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– as well as their family members – could have benefited from hospice support, but for various reasons, such as receiving skilled care, residents did not receive its services prior to death. (Note: skilled care is daily care, typically rehabilitative, directed by a skilled nurse or therapy specialist. Currently, the Medicare Hospice Benefit cannot be used concurrently with the Medicare Skilled Nursing Benefit) (19-21). One LPN wrote about how reluctance to enroll in hospice services, a difficult dying process, coupled with family discord led to a poor dying experience.
ACCEPTED MANUSCRIPT Dying in the Nursing Home 15 The family was very difficult and refused hospice services. The resident had a very slow agonizing death. The family was constantly fighting amongst themselves. It was just a terrible atmosphere and I believe the resident suffered
Negative Experiences Observed in Families
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because of it. - LPN
When staff respondents described negative experiences, a number of observed
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family experiences were reported. In all, six themes were identified from this perspective (Figure 2, column 3): resistance to EOL care; unprepared/denial; seeing resident suffer;
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bad timing (e.g., unable to say “goodbye”); refusing hospice care; painful emotions; and family discord. One LPN reported seeing families who were distraught, unprepared and in need of basic education about what to expect during the dying process: Family is sometimes not prepared. I believe some families could use more education on the dying process. They are often more distressed than the patient.
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– LPN
Related to being unprepared and having unrealistic expectations, another respondent simply remarked:
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When family members expect miracles. - LPN DISCUSSION
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Our study explored the perspectives of hundreds of NH staff, providing insights into their experiences at the bedside of dying residents. Staff described caring for NH residents at the EOL from their own perspective, including sources of distress or empowerment, as well as their observations of the experiences of residents and families. Staff members reported feeling gratified to provide EOL care and that their actions had positive impacts, particularly when they felt supported to give good care. In contrast, helplessness in the face of suffering, confusion, communication problems, and a lack of support were reported to contribute to staff distress. When NH staff observed negative
ACCEPTED MANUSCRIPT Dying in the Nursing Home 16 EOL experiences among resident and family members, they recounted unrelieved suffering, lack of preparation/acceptance, and family discord. In contrast, residents and families with positive experiences at the EOL were seen to be “at peace,” well cared for,
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prepared and having strong family support. Drawing from these rich themes, we focus our discussion on three key points, which represent actionable areas of improvement: potential targets for staff education and training; the need for consistent coordination
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with hospice providers; and opportunities to improve social support for patients. Targets for Staff Education/Training
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Given that >25% of US deaths annually occur in NHs, it is imperative that frontline workers are given the training and support they need to deliver good, personcentered care at the EOL. Frontline staff consistently have lower levels of knowledge about EOL issues when compared to knowledge about physical and psychological domains of care – and the majority of staff would welcome additional education on
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palliative and EOL care (17). A synthesis of our qualitative findings provide potential targets for staff education on best practices for EOL care, including: (a.) knowledge about the dying process; (b.) assessment and management of symptoms; (c.) an
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overview of family dynamics and common affective responses; (d.) strategies to facilitate communication between staff, other providers, residents and families; (e.) accurate
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knowledge about hospice and palliative care; (f.) a review of ethical and practical dilemmas, and guidance for what to do in such situations; (g.) means to preserve patient dignity; and (h.) education on self-care. NH staff cope with a myriad of challenges, including compound losses, being the target of family anger and unwarranted criticism, high levels of stress and burnout, and personal discomfort with providing care to dying patients (22-24). Improved staff coping may not only help them provide better care, but reduce staff burnout and high rates of turnover in NHs (22,24). Need for Consistent Coordination with Hospice Providers
ACCEPTED MANUSCRIPT Dying in the Nursing Home 17 Staff comments were generally positive about involving hospice in the care of dying NH patients. Participants reported, for example, that hospice provides a welcomed layer of extra support, needed expertise in pain and symptom management, and helpful
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bereavement care for families. Previous studies have consistently found that hospice in the NH is linked with improved EOL outcomes (e.g., better symptom management,
improved communication, and greater family satisfaction with care) (25-27). However, in
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our study, staff reported that residents were too often not enrolled in hospice and cited
instances where they believe this resulted in a resident’s undue suffering. Furthermore,
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they reported that residents forgo hospice enrollment for a range of reasons. In some cases, family members declined to enroll residents in hospice even though the resident was eligible. In other cases, the dying resident was receiving skilled nursing care, which cannot be provided concurrently with hospice. Because the Hospice Medicare Benefit does not pay for room-and-board, unlike the Skilled Nursing Benefit and Medicaid,
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enrolling in hospice services may be a financial burden for some families. Medical directors and primary care providers, in particular, have a crucial role to play in identifying hospice eligible residents and facilitating timely referral for services, as well
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as promoting optimal coordination of care between the NH and hospice provider. In addition to above, when residents were enrolled in hospice, respondents
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shared a number of noteworthy frustrations when working with hospice providers. These findings are congruent with quantitative findings from this sample, (17) whereby a majority of staff viewed hospice in the NH favorably, while significantly fewer reported favorable ratings about care coordination at the EOL. Drawing from multiple themes identified in our qualitative findings and building from an existing model for NH-hospice collaboration, (28) to avoid potential lapses in care coordination when hospice is involved, providers may benefit by trying the following strategies: (a.) promote a sense of “joint ownership” over patient care; (b.) clearly articulate roles, potential role overlap, and
ACCEPTED MANUSCRIPT Dying in the Nursing Home 18 delineation of care responsibilities; and (c.) maintain open and reliable channels of communication, particularly after hours. Opportunities to Improve Social Support for Patients
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Numerous respondents emphasized the importance of social support at the EOL. For example, dying alone or without family support were themes reported to contribute to a negative experience. Providing dying patients with a supportive presence could be
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facilitated through greater involvement of family members, an expansion of visitation
hours, or asking trained volunteers or community members to sit with a patient in their
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final days or hours. The desire to have someone at the bedside in one’s final moments of life likely varies from person to person (29). Future research should explore the link between social support at the very EOL and the quality of dying and death. In this regard, some promising efforts to improve supportive EOL care in long term care are already underway (e.g., establishing guidelines for best practice for EOL care in NHs
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that include strategies for involving families in resident care and decision-making) in many states including Colorado, California and Missouri (30-32). Additionally, models of care like the Green House approach (33) and the culture change movement in NHs (34)
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with their emphasis on person-centered care, promoting family involvement, and enhancing quality of life have demonstrated successful ways of delivering supportive
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care, including needed social support, to residents nearing death. Findings should be considered within the context of the study limitations. Our
data were obtained from two NH chains in one state, thus our findings may have limited generalizability to the larger population of NH staff. However, the analyses reflect responses from over 700 staff from rural, suburban and urban settings. Staff members also provided their perspectives as part of a self-reported survey – thus they were not asked follow-up questions that would have been possible in an interview or focus group format to obtain greater detail. Additionally, it is important to acknowledge that the
ACCEPTED MANUSCRIPT Dying in the Nursing Home 19 perspectives provided here came exclusively from NH staff members – and not patients or family members. Thus perceptions about good and bad dying experiences for patients and families were based on entirely subjective observations from the staff members’
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points of view. Future research should evaluate whether patients and family members themselves describe similar attributes about the dying experience. Conclusion
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The narratives provided by frontline NH staff paint a rich portrait of what it is like to work with dying patients in NHs and their families. Our data illustrate the profound and
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beneficial impact that staff members report having on the lives of residents with lifelimiting illness – and, related to this, how staff members themselves are affected, both positively and negatively, by their encounters when caring for dying patients. Staff members can, and do, form close affectionate ties with patients and families. In doing so, they also grieve when patients die and struggle to cope with multiple losses while on
NH.
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the job. Indeed, this is the often unseen, human side of working with dying patients in the
Findings reported here add to our conceptual understanding about quality of
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dying in the NH from the perspective of frontline staff providing hands on care. Although we provide novel data from a large sample of seasoned staff members about their
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perceptions of positive and negative EOL care experiences, our findings are only one step toward describing these rich and complex interactions. For example, future research can examine the prevalence of the issues and experiences identified here, as well as explore which are most important to residents, families and NH staff. While many staff members described positive and personally edifying aspects of working with dying patients and their families, opportunities for improving staff knowledge, care coordination with hospice providers, communication, and patient support, were also identified.
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DISCLOSURES AND AKNOWLEDGEMENTS This study was supported by Junior Faculty Career Development Awards from the
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National Palliative Care Research Center (J.G.C. and K.T.U.) and the National Institute on Aging, United States grant K24 AG024078 (K.T.U.). The team acknowledges M.E.
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ACCEPTED MANUSCRIPT Dying in the Nursing Home 24 Table 1. Characteristics of nursing home staff who provided qualitative responses (N=707)
660 (93.4%) 33 (4.7%) 14 (2.0%)
282 (39.9%) 211 (29.8%) 107 (15.1%) 27 (3.8%) 63 (8.9%) 17 (2.4%)
61 (8.7%) 256 (36.2%) 131 (18.5%) 244 (34.5%) 15 (2.1%)
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Position CNA LPN RN SW Other Missing Work experience in NHs <6 months 6 months - 5 years 5-10 years 10+ years Missing Work in dementia unit Yes No Missing
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551 (77.9%) 103 (14.6%) 16 (2.3%) 18 (2.6%) 19 (2.7%)
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259 (36.6%) 295 (41.7%) 138 (19.5%) 15 (2.1%)
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Total Sample* N (%)
Characteristic Age 18-30 31-50 51+ Missing Gender Female Male Missing Race/ethnicity White Black Hispanic Other Missing
144 (20.4%) 536 (75.8%) 27 (3.8%)
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*Percentages may not equal 100% due to rounding CNA=certified nursing assistant; LPN=licensed practical nurse; RN=registered nurse; SW=social worker
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Dying in the Nursing Home 25
Figure 1. Qualitative Themes: Nursing Home Staff’s Reports of Positive Experiences Caring for Dying Patients
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FAMILY
Supported: Emotionally Decisions Family Involved: Increased visits Present at death/said “goodbye” Knowing Loved One is Free of Pain Acknowledged Personhood/Humanity by: Sharing stories Smiling/Laughing Hospice Involved Educated (re: dying process; meds) Grief counseling provided Chaplain support Being Prepared Accepted Death (no anxiety) Informed (re: prognosis; treatment) Spiritual preferences honored
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Received Good Care: Physically Comfortable Pain Managed “At Peace” Clean, well-groomed Repositioned regularly Dignity Preserved Maintained Autonomy Peaceful Surroundings/Environment Kept Safe & Secure Not Alone Suffering Ended with Death Hospice Involved: Pain & Symptoms Managed Prepared: Accepted Death (no anxiety) Aware of Dying Gave/Received Forgiveness Customs Honored (e.g., Last Rites) Being able to say “Goodbye” Giving/Getting Forgiveness Crying (Cathartic; Healing)
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Note: EOL = end-of-life
RESIDENT
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Honored to Provide EOL Care Created a Close Bond (“like family”) Learned Something & Gained Perspective Received Appreciation from: Resident Family members Made a Difference by: Going the “Extra Mile” Responding to care/support needs Listening Physical touch/presence Hospice Involved Shared workload Provided EOL expertise Managed post-death details Prepared Accepted Dying/Death Knew what to expect Strength & meaning from faith Good Communication
OBSERVED IN OTHERS
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EXPERIENCED FIRSTHAND STAFF
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Dying in the Nursing Home 26
Figure 2. Qualitative Themes: Nursing Home Staff’s Reports of Negative Experiences Caring for Dying Patients
Note: EOL = end-of-life
RESIDENT
FAMILY
When EOL Care is Resisted Refusing Hospice Care Unprepared/Denial: Questions re: Dying Process Unrealistic Expectations Seeing Resident Suffer Bad Timing Unexpected Death Unable to say “Goodbye” Unprepared for Death Painful Emotions “Breaking Down” Anger Family Discord
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Alone (Absent Family) Privacy Ignored Suffering: Physical Symptoms Emotional Distress Protracted Dying Process Receiving Sub-Optimal Care: Not Checked Regularly Left Wet; Poor Oral Care Needed Care was Refused Under-Treated: Not Provided Pain Medication Oxygen Not Ordered Over-Treated Untimely Death Too Young Too Soon Hospice: Slow to Respond when Called Not involved: Incompatible with Skilled Care Refused by Family Uncertainty Care Preferences Unknown Painful Emotions Family Discord
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Witnessing Distressing Signs & Symptoms Feeling Helpless: Unable to Provide Comfort Cannot Stop “the Inevitable” Target of Anger, Criticism or Rudeness Unacknowledged Death (e.g., not memorialized) Not Being Present Dealing with Challenging Aspects of Care When Care Causes Discomfort Lack EOL Knowledge: Re: Medication Dosing Re: Dying Process Bad Timing (e.g., Unexpected Death) Hospice Involved (They “Take Over”) Not involved (Needed, but Not Referred) Uncertainty Whether Patient is Comfortable About Prognosis Communication (Poor or Challenging) Lapses with Patients, Families, Providers Having Difficult Conversations: Breaking Bad News Not Knowing the Right Thing to Say Painful Emotions Family Discord
OBSERVED IN OTHERS
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EXPERIENCED FIRSTHAND STAFF
S0885-3924(16)30766-7
DOI:
10.1016/j.jpainsymman.2016.08.022
Reference:
JPS 9289
To appear in:
Journal of Pain and Symptom Management
Received Date: 6 June 2016 Revised Date:
24 August 2016
Accepted Date: 26 August 2016
Please cite this article as: Cagle JG, Unroe KT, Bunting M, Bernard B, Miller SC, Caring for Dying Patients in the Nursing Home: Voices from Frontline Nursing Home Staff, Journal of Pain and Symptom Management (2016), doi: 10.1016/j.jpainsymman.2016.08.022. This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting proof before it is published in its final form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain.
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RUNNING TITLE: Dying in the Nursing Home
Caring for Dying Patients in the Nursing Home:
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Voices from Frontline Nursing Home Staff
John G. Cagle, PhD, MSW1
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Kathleen T. Unroe, MD, MHA2,3 Morgan Bunting, BS1
Brittany Bernard, BS2,3
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Susan C. Miller, PhD, MBA4
1
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University of Maryland, Baltimore, USA Indiana University Center for Aging Research, Indianapolis, USA 3 Regenstrief Institute, Inc., Indianapolis, USA 4 Brown University School of Public Health, Providence, USA 2
Tables: 1 Figures: 2 References: 34 Word Count: 5,028
Address correspondence to: John G. Cagle, Ph.D., Assistant Professor, University of Maryland, Baltimore, School of Social Work, 525 West Redwood Street, 3W13, Baltimore, MD 21201; phone: (410) 706-6106; e-mail: [email protected]
1
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ABSTRACT Context: Nursing homes are an important site for end of life care, yet little is known about the perspectives of the front line staff who provide a majority of this care.
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Objective: To describe, from the staff perspective, positive/negative experiences related to caring for dying residents.
Methods: Qualitative analysis using survey data from staff working in 52 Indiana nursing
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homes.
Participants: 707 frontline staff who provide nursing, nurse aide and social work services
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responded to open-ended prompts. Study data included responses to open-ended prompts asking participants to describe one positive experience and one negative experience caring for a dying patient. A thematic content analysis was conducted using the constant-comparative method.
Results: Respondents were largely female (93%), white (78%), 31-50 years (42%), and
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53% had >5 years of NH work experience. Experiences were described from three perspectives: (1) first-hand experiences; (2) observed experiences of dying patients; and (3) observed experiences of family members. Selected themes for positive experiences
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include: creating close bonds; good patient care; involvement of hospice; being prepared; and good communication. Selected themes for negative experiences
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consisted of: challenging aspects of care; unacknowledged death; feeling helpless; uncertainty; absent family; painful emotions; and family discord. Conclusion: Findings reveal the richness and many complexities of providing end of life care in nursing homes, and have implications for improving staff knowledge, coordination of care with hospice, and social support for patients. Key words: Long-term care; hospice; palliative care; person-centered care; quality of dying; death Accepted for publication: August 26, 2016.
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INTRODUCTION Nearly 1.5 million people reside in nursing homes (NHs) in the United States (1) and approximately 30% of deaths among older adults (65+ years) occur within the NH
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setting (2). Past research has identified a number of important concerns about the quality of care for dying NH residents including inconsistent assessment and treatment of pain, (3) lack of attention to resident quality of life, (4) and missed opportunities for
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patient-centered decision-making (5). The need for high quality end-of-life (EOL) care in NHs is projected to increase in lock step with the fast growing number of older adults in
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the U.S (6,7).
NHs rely on frontline NH staff to provide hands-on care to patients. Previous studies suggest that NH staff may not be properly trained and supported to care for dying patients (8,9). The traditional model of NH care focuses on rehabilitation and restoration (10). However, when a patient with life-threatening illness nears EOL, staff
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must often make a difficult shift from a restorative approach to a model more consistent with palliative care (10,11). Good communication, comprehensive training in EOL care, and staff support may help NH staff facilitate this shift (12-14). In addition to staff
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communication, psychosocial support7 and previous experience with death and dying13 may also influence staff members’ comfort level with providing EOL care.
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There has been tremendous growth in the number of external hospice agencies providing services to dying NH patients in the U.S (15). However, among NH staff, there are mixed attitudes and receptivity regarding the value of hospice services in the NH (16). Dedicated investigation focusing on NH staff attitudes towards hospice is needed to understand the disconnect between some NH and hospice staff. Unroe et al. (2014) quantitatively analyzed NH staff perceptions about hospice and found that the majority viewed hospice as generally positive, but more beneficial for patients and families than for the NH staff themselves. The study also found that staff frequently reported poor
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communication between NH and hospice staff, which could contribute to poorly coordinated care, (17) and ultimately lower the quality of care for dying patients. Understanding NH staff perceptions about death and dying is critical to better
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understand and address the many challenges of providing high quality EOL care in the NH environment. Although a substantial proportion of U.S. deaths occur in NHs, few
studies have qualitatively explored frontline staff perceptions about EOL experiences in
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the NH and the various factors that contribute to quality of dying for residents. This study addresses this knowledge gap. As part of a larger study examining perceptions of staff
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towards palliative care and hospice, (17) we conducted a qualitative content analysis to identify recurring themes related to positive and negative descriptions of experiences caring for dying patients.
METHODS
Design
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This qualitative study used open-ended survey data from frontline NH staff – including registered nurses (RNs), licensed practical nurses (LPNs), certified nursing assistants (CNAs), and social workers (SWs) – working in 52 facilities from two large NH
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chains in Indiana. Although survey items were identical, one chain was given hardcopies during a staff meeting while the other chain completed the same survey items using
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Survey Monkey, an online survey tool. Study procedures were approved by the Indiana University IRB. Measures
Survey measures asked about basic demographic information; general
knowledge, attitudes and opinions about EOL care in the NH; and to describe positive and negative experiences caring for a dying patient. Specifically, for this study we focused on responses to the following two prompts: 1. Describe a POSITIVE experience taking care of a dying patient.
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2. Describe a NEGATIVE experience taking care of a dying patient. Analysis
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Sample characteristics were summarized using frequencies and percentages. The survey response rate was computed based on the number of completed surveys versus the total number of staff given an opportunity to complete the survey. Open-
ended responses were initially coded for thematic content by the primary author and a
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working codebook was developed. The constant-comparative method (18) was used to identify recurrent/emergent themes within the data. Raw data were unitized using open
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coding. Coded excerpts with similar themes were grouped together. After the initial round of coding and categorization, findings were reviewed by Drs. Cagle and Unroe for corroboration and peer oversight.
Responses from a subsample of randomly selected cases (N=39, 5%) were reviewed and independently coded by three members (K.U., B.B., M.B) of the
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interdisciplinary (medicine, social work and gerontology) research team with >80% concordance. The team resolved conflicting themes/categorizations and revised the codebook accordingly. Direct quotes that encapsulated identified themes are presented
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as exemplars. In particular, we selected quotes that presented either multiple themes or especially rich detail about the concepts being described. All identifying content was
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changed or removed to preserve respondent anonymity. To ensure validity of results, preliminary themes and subthemes were reviewed and critiqued by a subsample of 15 staff members (4 RNs, 4 LPNs, 5 CNAs, and 2 SWs) from 4 of the participating facilities, 2 from each chain.
RESULTS As shown in Table 1, among the 707 participants who responded to the openended prompts, the majority were female (93%), white (78%), and 31-50 years old
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(42%). Respondents were largely frontline clinical staff consisting of CNAs (40%), LPNs (30%), RNs (15%), and SWs (4%). The sample was relatively seasoned as 53% had >5 years of NH experience. 4.6% of respondents reported they had not had a negative
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experience when caring for a dying patient. Overall, there were slightly more responses to the positive prompt (92.8%) compared to the negative prompt (86.4%). The full survey response rate was 71%.
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Staff members described experiences from one of three perspectives: (1) first-
hand accounts experienced by the respondent herself/himself (i.e., the experience was
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positive/negative for the staff member); (2) observed experiences of dying patients (i.e., the staff member considered the experience positive/negative for the patient); and (3) observed experiences of family members (i.e., the staff member viewed the experience as positive/negative for the family). Results are presented separately based on these three perspectives. Figures 1 and 2 provide a complete summary of identified themes
Positive Experiences
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and subthemes stratified by perspective.
First-Hand Positive Experiences
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When staff members described a positive experience they had while caring for a dying patient, eight themes emerged (Figure 1, column 1): honored to provide EOL care;
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creating close bonds, i.e., “being like family”; learning something; feeling appreciated; making a difference; supportive hospice involvement; being prepared (intellectually, emotionally and spiritually); and, good communication. One response from a CNA exemplified a number of these themes, including feeling honored, creating close bonds, learning something, and feeling appreciated: It is an honor to be the person taking care of a dying resident. Not only do you become closer with the patient’s family, but you also learn a lot about the past.
ACCEPTED MANUSCRIPT Dying in the Nursing Home Also it is about the only time a CNA feels appreciated and noticed. The families appreciate what we do! - CNA Multiple staff members reported having learned either new clinical knowledge or care-
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related skills while caring for a dying person. As one respondent phrased it: I learned a lot about how to simultaneously bring physical comfort to the dying person and emotional comfort to the family […] it was ultimately a positive
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experience because I truly knew we did everything in our power to make the resident's final moments as comfortable as possible. - RN
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Knowing that the care being provided had a beneficial impact on the dying patient (i.e., making a difference) was a recurring theme. Staff members reported feeling that they helped by being responsive to the patient’s need for supportive care by listening, providing a calming physical touch and presence, or “going the extra mile.” One staff member noted that acts of compassion can have a significant and beneficial impact on
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patient/family perceptions.
I’ve learned that the smallest act of kindness is greatly observed and needed by family and the residents. I’ve learned how to show compassion under pressure
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and fear. – CNA
When describing positive EOL care experiences, respondents frequently
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mentioned hospice. An LPN respondent discussed how she was grateful for hospice involvement because dying patients require specialized attention beyond what NH staff members can routinely provide. I’m always happy when hospice steps in and takes some of the workload off the nurse. Dying patients need one-on-one care and sometimes that can be hard when you have other residents. - LPN Being able to communicate well with patients, families and other care providers was another prevailing positive theme mentioned by staff. In particular, open and
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thorough communication was cited as important to facilitate care coordination (e.g., with physicians, hospice providers) and to educate patients/families about what to expect at EOL. As one RN shared:
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It was a positive experience to offer comfort and education to the family when they had fears about pain medications being addictive, and questions about
‘what happens next.’ It is a comfort to me, as well as the patient and family, to
Positive Experiences Observed in Dying Patients
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provide end of life care. - RN
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When respondents described positive dying experiences from the perspective of the patient, five major themes were identified (Figure 1, column 2): received good care; not being alone; suffering ended with death; hospice involved; and being prepared (physically, intellectually, and emotionally). Staff consistently remarked that it is critical for NH patients to receive good care at EOL. Good care included managing pain and
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symptoms (ensuring patients are “at peace”), preserving dignity and autonomy, giving careful attention to hygiene and basic needs, and maintaining a calm, secure environment. One staff member summarized several of these points in her response:
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Keeping the patient comfortable - maintaining family involvement. Being there for family support. Maintaining the patient’s dignity. – RN
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Good care was often provided by, or in concert with, hospice services: This particular patient was extremely grateful to hospice when they were able to get her pain at a sustainable level. The joy in her face from being in less pain made it a little easier for the family. The family was able to spend her last days with her in peace. - LPN Being intellectually, emotionally and spiritually prepared also emerged as an important theme. One staff member shared how residents’ awareness and acceptance that they are dying can help to make the experience a positive one:
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When the resident themselves are at peace and are ready to pass. I had a resident who was very excited to meet her Lord. [She] would joke and say ‘Dangit, I woke up again’ with a laugh. - Job Role Unspecified
that ends with death, one CNA shared an anecdote:
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Also related to patients being emotionally/intellectually prepared for death and suffering
There was a man who was ready to die and his family had come to terms with his
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death. The family had been prepared for his death, and he had too, so it was not a sad experience. It was sad he was dying but it was beautiful that the family and
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the patient expected it. Death is something that will happen to all of us at one point in time and it is nice to see a person ready to face what we all one day will with open arms and willingness. This man lived a full happy life with a beautiful woman who had passed away a few years before and he was ready to be with her. Even his last day he talked of a happy life and better times and the pain he
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was in was horrible -- he was ready to go to a better place. If every person could be comforted like this man and his family the world and death would not be so scary. – CNA
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Related to being prepared, multiple staff respondents mentioned that, for patients, being able to say “goodbye” was an important factor at the EOL. For example, a SW
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respondent stated:
Recently a long term resident elected hospice services at the hospital but wanted to ‘come home’ to the facility to pass away. He was able to say his goodbyes to staff, family, and friends before he passed and he and his family were at peace with the process. - SW
Positive Experiences Observed in Families Staff members also described positive aspects of EOL care in relation to family members. From this perspective, six core themes were identified (Figure 1, column 3):
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family informed of prognosis and expected decline). One staff member recounted a story illustrating the importance of family presence at the EOL, and the benefits of supporting families, both adults and children, during their visits to see the patient in the facility.
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We had a resident that was passing and there were family and small kids here in their room. It was getting late. We had just cleaned up, changed and repositioned
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the resident and tried to make him comfortable. After that we got refreshments for the family and I made a tent out of blankets over the back of a recliner and made an area for the kids to lay down and watch movies to keep them happy and occupied in the time of stress for the family. They all liked it and it helped the parents be able to focus on their family member passing. - CNA
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Negative Experiences First-Hand Negative Experiences
When describing negative experiences caring for dying patients from their own
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perspective, staff member responses covered 12 themes (see Figure 2, column 1): witnessing distressing signs and symptoms; feeling helpless; being the target of
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resident/family/provider criticism; unacknowledged death (i.e., patient death either not properly memorialized or altogether ignored); not being present for the patient; challenging care; bad timing (e.g., unexpected death); hospice (involvement or noninvolvement); uncertainty; poor or challenging communication; painful emotions; and, family discord. Staff members were personally troubled when they witnessed distressing signs and symptoms, such as dying patients moaning in apparent discomfort. Others found physical deterioration (i.e., “withering”) upsetting. Distressing signs and symptoms also included affective responses such as seeing patients struggle with emotional pain
ACCEPTED MANUSCRIPT Dying in the Nursing Home 11 or fear. A few respondents noted that watching a patient exsanguinate, or witnessing the death itself (i.e., “seeing last breath”), was especially disturbing. One LPN described feeling helpless while caring for a resident who had clear
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and observable signs of discomfort because a contentious family refused treatment: Feeling like ‘my hands are tied’ during times when there are families in conflict over treatment or families are just not wanting anything done period. I had a
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family that did not want their mom given morphine despite she had every sign
and symptom of pain, they refused to let us treat her. I talked to them until I cried.
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It was no use, they said ‘she is out of it – she probably isn't in pain.’ - LPN Staff members routinely reported being the target of resident, family, or provider anger, blame and rudeness. In reference to being a target of undeserved criticism, one CNA shared:
When a patient that is clearly passing soon has family that become irrational and
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try to blame us for what is happening and not understanding why we cannot stop the inevitable. - CNA
Family discord was observed by several respondents as part of their negative
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experience, particularly when disagreements result in patient care inconsistent with patient preferences. One LPN encompassed these observations by reporting:
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When part of the family members want to change the care from what the resident had requested. - LPN
One respondent discussed how witnessing a protracted dying process or seeing residents face death alone was a negative experience: The worst experience for me is when they hang on for months and just wither away. It breaks my heart. Also, when they die with no family or anyone present -that is the ultimate worst for me. I don't think anyone deserves to die alone. CNA
ACCEPTED MANUSCRIPT Dying in the Nursing Home 12 Descriptions of painful emotions frequently accompanied respondent descriptions of negative experiences. These included instances of seeing family members in emotional pain, getting too attached to patients, profound “heartache” and grief, and difficulties
experience for her was the grief and emotional pain:
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maintaining an emotional distance. As one CNA shared, the most difficult part of the
The hardest part of taking care of a dying resident is the heartache that follows.
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We grow attached to people, and sometimes it can cause grief. - CNA
Although most respondents described hospice support favorably, some
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recounted frustration and disappointment when coordinating care with hospice agencies. A few reported that hospice providers “take over” patient care, even though NH staff want to remain involved – and are capable of doing so. Others reported having questions about overlapping roles with hospice providers. The importance of good communication between hospice and NH was a recurring theme, as well as the
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importance of smooth care coordination and being responsive to patient/family needs in a timely manner. As one LPN shared:
Many times the bringing together of outside forces can make the care of the
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patient difficult. Even though hospice is [available] 24/7- often you have to wait for a phone call to be returned, medications to be dropped off (when the patient
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is in need), or an order from a physician who may not always be available. As well as the fact of having to go through hospice in order to obtain all of this can cause delay in the care of a dying person, which becomes frustrating. - LPN
Negative Experiences Observed in Dying Patients When staff members described negative experiences they had witnessed among dying residents, nine themes were identified (Figure 2, column 2): being alone (e.g., absent family); privacy ignored; suffering (physical/emotional); receiving suboptimal
ACCEPTED MANUSCRIPT Dying in the Nursing Home 13 care; untimely death (e.g., too young); hospice (non-involvement or unresponsive); uncertainty (e.g., care preferences unknown); painful emotions; and, family discord. Respondents echoed a desire for patients to not be alone when dying; and that
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family members should be present and involved. Watching a patient suffer in physical, emotional, or spiritual distress was often mentioned when describing negative
experiences. Pain, dyspnea, agitation, and delirium, in particular, were cited as
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contributors to physical suffering. One LPN shared the following story, an example of spiritual or existential suffering:
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My resident fought death, yelling and cursing as he was passing. He was screaming and had the look of horror on his face. I’ve never forgotten this resident as he often cursed God for the way his life turned out. - LPN Multiple respondents shared their observations about how suboptimal care can contribute to an adverse dying experience including, instances when the patient was not
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checked frequently enough, was left wet, or received poor oral care. Suboptimal care also included under-treatment (e.g., oxygen or pain medicine was needed, but not provided) and over-treatment. Examples of overtreatment included unnecessary
last days.
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nutrition/hydration, repeated hospitalizations, and futile restorative care in the patient’s
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Family discord also emerged as an important theme. When disagreements center around treatment options, family disputes can create uncertainty about the current course of treatment, dilemmas for staff, and care regimens that conflict with the patient’s needs or preferences. A SW described how family discord, ignoring a patient’s treatment preferences and witnessing distressing symptoms created a negative experience for everyone involved in the situation: When a resident was dying and family were arguing over whether or not to place a feeding tube. When the resident was alert, before he was in the process of
ACCEPTED MANUSCRIPT Dying in the Nursing Home 14 dying, he had made it clear that he did not want a feeding tube. Family members could not agree and one family member finally had a feeding tube placed. It was difficult to watch the pain and anxiety it caused to all involved. - SW
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Conflict between family members can also distract from the supportive care that the patient needs. An LPN shared a case where family seemed more interested in
divvying up the patient’s possessions, rather than being present for her in her final dying
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moments.
The patient was taking her last breaths and the family was fighting in the patient’s
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room over her belongings. - LPN
Non-enrollment in hospice, or absence of hospice staff when dying residents have distressing symptoms such as dyspnea and fear/anxiety, was also viewed to have a detrimental impact on the dying experience. An LPN reported:
When an alert patient on hospice had a sudden condition change. She was
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struggling to breathe and knew that she was dying. She was fearful and it was difficult to calm or comfort her. She died before hospice services were able to make it to the facility. - LPN
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In general, the absence of hospice services contributed to negative perceptions of the resident’s dying experience. In some cases, staff members reported that residents
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– as well as their family members – could have benefited from hospice support, but for various reasons, such as receiving skilled care, residents did not receive its services prior to death. (Note: skilled care is daily care, typically rehabilitative, directed by a skilled nurse or therapy specialist. Currently, the Medicare Hospice Benefit cannot be used concurrently with the Medicare Skilled Nursing Benefit) (19-21). One LPN wrote about how reluctance to enroll in hospice services, a difficult dying process, coupled with family discord led to a poor dying experience.
ACCEPTED MANUSCRIPT Dying in the Nursing Home 15 The family was very difficult and refused hospice services. The resident had a very slow agonizing death. The family was constantly fighting amongst themselves. It was just a terrible atmosphere and I believe the resident suffered
Negative Experiences Observed in Families
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because of it. - LPN
When staff respondents described negative experiences, a number of observed
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family experiences were reported. In all, six themes were identified from this perspective (Figure 2, column 3): resistance to EOL care; unprepared/denial; seeing resident suffer;
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bad timing (e.g., unable to say “goodbye”); refusing hospice care; painful emotions; and family discord. One LPN reported seeing families who were distraught, unprepared and in need of basic education about what to expect during the dying process: Family is sometimes not prepared. I believe some families could use more education on the dying process. They are often more distressed than the patient.
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– LPN
Related to being unprepared and having unrealistic expectations, another respondent simply remarked:
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When family members expect miracles. - LPN DISCUSSION
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Our study explored the perspectives of hundreds of NH staff, providing insights into their experiences at the bedside of dying residents. Staff described caring for NH residents at the EOL from their own perspective, including sources of distress or empowerment, as well as their observations of the experiences of residents and families. Staff members reported feeling gratified to provide EOL care and that their actions had positive impacts, particularly when they felt supported to give good care. In contrast, helplessness in the face of suffering, confusion, communication problems, and a lack of support were reported to contribute to staff distress. When NH staff observed negative
ACCEPTED MANUSCRIPT Dying in the Nursing Home 16 EOL experiences among resident and family members, they recounted unrelieved suffering, lack of preparation/acceptance, and family discord. In contrast, residents and families with positive experiences at the EOL were seen to be “at peace,” well cared for,
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prepared and having strong family support. Drawing from these rich themes, we focus our discussion on three key points, which represent actionable areas of improvement: potential targets for staff education and training; the need for consistent coordination
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with hospice providers; and opportunities to improve social support for patients. Targets for Staff Education/Training
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Given that >25% of US deaths annually occur in NHs, it is imperative that frontline workers are given the training and support they need to deliver good, personcentered care at the EOL. Frontline staff consistently have lower levels of knowledge about EOL issues when compared to knowledge about physical and psychological domains of care – and the majority of staff would welcome additional education on
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palliative and EOL care (17). A synthesis of our qualitative findings provide potential targets for staff education on best practices for EOL care, including: (a.) knowledge about the dying process; (b.) assessment and management of symptoms; (c.) an
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overview of family dynamics and common affective responses; (d.) strategies to facilitate communication between staff, other providers, residents and families; (e.) accurate
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knowledge about hospice and palliative care; (f.) a review of ethical and practical dilemmas, and guidance for what to do in such situations; (g.) means to preserve patient dignity; and (h.) education on self-care. NH staff cope with a myriad of challenges, including compound losses, being the target of family anger and unwarranted criticism, high levels of stress and burnout, and personal discomfort with providing care to dying patients (22-24). Improved staff coping may not only help them provide better care, but reduce staff burnout and high rates of turnover in NHs (22,24). Need for Consistent Coordination with Hospice Providers
ACCEPTED MANUSCRIPT Dying in the Nursing Home 17 Staff comments were generally positive about involving hospice in the care of dying NH patients. Participants reported, for example, that hospice provides a welcomed layer of extra support, needed expertise in pain and symptom management, and helpful
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bereavement care for families. Previous studies have consistently found that hospice in the NH is linked with improved EOL outcomes (e.g., better symptom management,
improved communication, and greater family satisfaction with care) (25-27). However, in
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our study, staff reported that residents were too often not enrolled in hospice and cited
instances where they believe this resulted in a resident’s undue suffering. Furthermore,
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they reported that residents forgo hospice enrollment for a range of reasons. In some cases, family members declined to enroll residents in hospice even though the resident was eligible. In other cases, the dying resident was receiving skilled nursing care, which cannot be provided concurrently with hospice. Because the Hospice Medicare Benefit does not pay for room-and-board, unlike the Skilled Nursing Benefit and Medicaid,
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enrolling in hospice services may be a financial burden for some families. Medical directors and primary care providers, in particular, have a crucial role to play in identifying hospice eligible residents and facilitating timely referral for services, as well
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as promoting optimal coordination of care between the NH and hospice provider. In addition to above, when residents were enrolled in hospice, respondents
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shared a number of noteworthy frustrations when working with hospice providers. These findings are congruent with quantitative findings from this sample, (17) whereby a majority of staff viewed hospice in the NH favorably, while significantly fewer reported favorable ratings about care coordination at the EOL. Drawing from multiple themes identified in our qualitative findings and building from an existing model for NH-hospice collaboration, (28) to avoid potential lapses in care coordination when hospice is involved, providers may benefit by trying the following strategies: (a.) promote a sense of “joint ownership” over patient care; (b.) clearly articulate roles, potential role overlap, and
ACCEPTED MANUSCRIPT Dying in the Nursing Home 18 delineation of care responsibilities; and (c.) maintain open and reliable channels of communication, particularly after hours. Opportunities to Improve Social Support for Patients
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Numerous respondents emphasized the importance of social support at the EOL. For example, dying alone or without family support were themes reported to contribute to a negative experience. Providing dying patients with a supportive presence could be
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facilitated through greater involvement of family members, an expansion of visitation
hours, or asking trained volunteers or community members to sit with a patient in their
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final days or hours. The desire to have someone at the bedside in one’s final moments of life likely varies from person to person (29). Future research should explore the link between social support at the very EOL and the quality of dying and death. In this regard, some promising efforts to improve supportive EOL care in long term care are already underway (e.g., establishing guidelines for best practice for EOL care in NHs
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that include strategies for involving families in resident care and decision-making) in many states including Colorado, California and Missouri (30-32). Additionally, models of care like the Green House approach (33) and the culture change movement in NHs (34)
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with their emphasis on person-centered care, promoting family involvement, and enhancing quality of life have demonstrated successful ways of delivering supportive
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care, including needed social support, to residents nearing death. Findings should be considered within the context of the study limitations. Our
data were obtained from two NH chains in one state, thus our findings may have limited generalizability to the larger population of NH staff. However, the analyses reflect responses from over 700 staff from rural, suburban and urban settings. Staff members also provided their perspectives as part of a self-reported survey – thus they were not asked follow-up questions that would have been possible in an interview or focus group format to obtain greater detail. Additionally, it is important to acknowledge that the
ACCEPTED MANUSCRIPT Dying in the Nursing Home 19 perspectives provided here came exclusively from NH staff members – and not patients or family members. Thus perceptions about good and bad dying experiences for patients and families were based on entirely subjective observations from the staff members’
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points of view. Future research should evaluate whether patients and family members themselves describe similar attributes about the dying experience. Conclusion
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The narratives provided by frontline NH staff paint a rich portrait of what it is like to work with dying patients in NHs and their families. Our data illustrate the profound and
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beneficial impact that staff members report having on the lives of residents with lifelimiting illness – and, related to this, how staff members themselves are affected, both positively and negatively, by their encounters when caring for dying patients. Staff members can, and do, form close affectionate ties with patients and families. In doing so, they also grieve when patients die and struggle to cope with multiple losses while on
NH.
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the job. Indeed, this is the often unseen, human side of working with dying patients in the
Findings reported here add to our conceptual understanding about quality of
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dying in the NH from the perspective of frontline staff providing hands on care. Although we provide novel data from a large sample of seasoned staff members about their
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perceptions of positive and negative EOL care experiences, our findings are only one step toward describing these rich and complex interactions. For example, future research can examine the prevalence of the issues and experiences identified here, as well as explore which are most important to residents, families and NH staff. While many staff members described positive and personally edifying aspects of working with dying patients and their families, opportunities for improving staff knowledge, care coordination with hospice providers, communication, and patient support, were also identified.
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DISCLOSURES AND AKNOWLEDGEMENTS This study was supported by Junior Faculty Career Development Awards from the
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National Palliative Care Research Center (J.G.C. and K.T.U.) and the National Institute on Aging, United States grant K24 AG024078 (K.T.U.). The team acknowledges M.E.
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ACCEPTED MANUSCRIPT Dying in the Nursing Home 24 Table 1. Characteristics of nursing home staff who provided qualitative responses (N=707)
660 (93.4%) 33 (4.7%) 14 (2.0%)
282 (39.9%) 211 (29.8%) 107 (15.1%) 27 (3.8%) 63 (8.9%) 17 (2.4%)
61 (8.7%) 256 (36.2%) 131 (18.5%) 244 (34.5%) 15 (2.1%)
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Position CNA LPN RN SW Other Missing Work experience in NHs <6 months 6 months - 5 years 5-10 years 10+ years Missing Work in dementia unit Yes No Missing
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551 (77.9%) 103 (14.6%) 16 (2.3%) 18 (2.6%) 19 (2.7%)
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259 (36.6%) 295 (41.7%) 138 (19.5%) 15 (2.1%)
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Total Sample* N (%)
Characteristic Age 18-30 31-50 51+ Missing Gender Female Male Missing Race/ethnicity White Black Hispanic Other Missing
144 (20.4%) 536 (75.8%) 27 (3.8%)
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*Percentages may not equal 100% due to rounding CNA=certified nursing assistant; LPN=licensed practical nurse; RN=registered nurse; SW=social worker
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Dying in the Nursing Home 25
Figure 1. Qualitative Themes: Nursing Home Staff’s Reports of Positive Experiences Caring for Dying Patients
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FAMILY
Supported: Emotionally Decisions Family Involved: Increased visits Present at death/said “goodbye” Knowing Loved One is Free of Pain Acknowledged Personhood/Humanity by: Sharing stories Smiling/Laughing Hospice Involved Educated (re: dying process; meds) Grief counseling provided Chaplain support Being Prepared Accepted Death (no anxiety) Informed (re: prognosis; treatment) Spiritual preferences honored
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Received Good Care: Physically Comfortable Pain Managed “At Peace” Clean, well-groomed Repositioned regularly Dignity Preserved Maintained Autonomy Peaceful Surroundings/Environment Kept Safe & Secure Not Alone Suffering Ended with Death Hospice Involved: Pain & Symptoms Managed Prepared: Accepted Death (no anxiety) Aware of Dying Gave/Received Forgiveness Customs Honored (e.g., Last Rites) Being able to say “Goodbye” Giving/Getting Forgiveness Crying (Cathartic; Healing)
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Note: EOL = end-of-life
RESIDENT
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Honored to Provide EOL Care Created a Close Bond (“like family”) Learned Something & Gained Perspective Received Appreciation from: Resident Family members Made a Difference by: Going the “Extra Mile” Responding to care/support needs Listening Physical touch/presence Hospice Involved Shared workload Provided EOL expertise Managed post-death details Prepared Accepted Dying/Death Knew what to expect Strength & meaning from faith Good Communication
OBSERVED IN OTHERS
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EXPERIENCED FIRSTHAND STAFF
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Dying in the Nursing Home 26
Figure 2. Qualitative Themes: Nursing Home Staff’s Reports of Negative Experiences Caring for Dying Patients
Note: EOL = end-of-life
RESIDENT
FAMILY
When EOL Care is Resisted Refusing Hospice Care Unprepared/Denial: Questions re: Dying Process Unrealistic Expectations Seeing Resident Suffer Bad Timing Unexpected Death Unable to say “Goodbye” Unprepared for Death Painful Emotions “Breaking Down” Anger Family Discord
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Alone (Absent Family) Privacy Ignored Suffering: Physical Symptoms Emotional Distress Protracted Dying Process Receiving Sub-Optimal Care: Not Checked Regularly Left Wet; Poor Oral Care Needed Care was Refused Under-Treated: Not Provided Pain Medication Oxygen Not Ordered Over-Treated Untimely Death Too Young Too Soon Hospice: Slow to Respond when Called Not involved: Incompatible with Skilled Care Refused by Family Uncertainty Care Preferences Unknown Painful Emotions Family Discord
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Witnessing Distressing Signs & Symptoms Feeling Helpless: Unable to Provide Comfort Cannot Stop “the Inevitable” Target of Anger, Criticism or Rudeness Unacknowledged Death (e.g., not memorialized) Not Being Present Dealing with Challenging Aspects of Care When Care Causes Discomfort Lack EOL Knowledge: Re: Medication Dosing Re: Dying Process Bad Timing (e.g., Unexpected Death) Hospice Involved (They “Take Over”) Not involved (Needed, but Not Referred) Uncertainty Whether Patient is Comfortable About Prognosis Communication (Poor or Challenging) Lapses with Patients, Families, Providers Having Difficult Conversations: Breaking Bad News Not Knowing the Right Thing to Say Painful Emotions Family Discord
OBSERVED IN OTHERS
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EXPERIENCED FIRSTHAND STAFF