Live Hospice Discharge: Experiences of Families, and Hospice Staff

Abstract

Objective:

To examine live hospice discharge prevalence and experiences of families and hospice staff. Hospice eligibility is based on a cancer model where decline and death are predicable. Decline is less predictable for diagnoses such as dementia, frequently resulting in involuntary live hospice discharge.

Methods:

A mixed-method integration of hospice 2013–17 admission/discharge data, 5 family interviews, hospice discipline-specific focus groups (3 aides, 2 nurses, 1 administrator interview) and a discipline-combined focus group (all 6 staff; each staff participant engaged in two data collection experiences).

Results:

5,648 hospice admissions occurred between 2013–17; 795 patients experienced live discharge. The most prevalent admitting diagnosis was cancer, the most prevalent live discharge diagnosis was dementia. Family caregiver themes were Attitude and experience with hospice, Discharge experience, and Continued need/desire for hospice following discharge. Staff themes were Discharge circumstances, Regulatory guidelines, and Changing practice to meet regulatory guidelines.

Conclusion:

Involuntary live hospice discharge precludes patient-centered care due to policy constraints, especially for those with noncancer diagnoses. Families and staff noted the paradox of beneficial hospice care, yet this care resulted in ineligibility for continued hospice services.

Practice Implications:

Transparent, patient-family-staff communication (including CNAs) facilitates hospice live discharge planning. Hospice service eligibility policy changes are needed.

1.0. Introduction

Hospice Care in the United States is offered when curative treatments are not possible or desired, and when patient life expectancy is 6 months or less [1]. Hospice care is distinguished from palliative care that addresses comprehensive symptom management which may be in place prior to a decision to forego curative treatment. Hospice care, delivered by an interdisciplinary team of healthcare providers who tailor care to the patient and family’s goals and wishes, embraces a commitment to patient-centeredness [2]. Involuntary live hospice discharge occurs when hospice patients outlive eligibility, specifically when patient decline does not result in death within six months.

The Centers for Medicare and Medicaid Services (CMS) establishes and enforces the Conditions of Participation that determine hospice enrollment, eligibility, staffing standards, reimbursement protocols, and clinical practices. Although hospice care can be extended with documentation of ongoing patient decline, ineligibility occurs when patient death does not occur as expected. Recent reports suggest the prevalence of live hospice discharge is increasing with estimates of 20% of hospice patients experiencing live discharge [3–5]. Currently, eligibility is based on a cancer model, where prognostication of decline is well known [6]. Triggers of potential ineligibility include disease stabilization resulting in delayed decline, functional stability (fewer falls and decubitus ulcers, improved nutrition because of “hand-feeding” education), and patient death not occurring in 6 months. Consequently, the primary reason for involuntary live hospice discharge is a dying process characterized by exacerbations and remissions and an unpredictable death trajectory. This is particularly relevant among those with dementia, pulmonary disease, or cardiac conditions, suggesting the need for closer examination of hospice eligibility criteria [7, 8].

1.1. Background

Patient-centered care is central to hospice care [2, 9]. Hospice staff continually assess each unique patient situation providing holistic end-of-life care, and building relationships to understand physical, spiritual, emotional, social, and cultural goals and values [2, 9]. When live discharge occurs, decisions are driven by patient-family preferences and regulatory forces, creating an ambiguous line between appropriate and inappropriate hospice discharge [10].

Some live discharges are due to a decision to pursue curative care (e.g. emergency care, chemotherapy) [11] however most live hospice discharges occur due to ineligibility for services (i.e., patient stabilization and corresponding disqualification for greater than expected length of life). Live discharges due to ineligibility are more likely among persons living with dementia and those with cardiac or pulmonary disease because these diagnoses lack a clear trajectory of patient decline as opposed to cancer diagnoses [3, 10, 12].

Regardless of diagnosis, unanticipated and/or undesired live discharge is distressing to patients, families, and hospice staff. Live discharge can be very difficult when families and patients have accepted impending patient death, creating emotional distress (guilt at not dying, abandonment by hospice staff, uncertainty, frustration) and distress about the removal of supportive services (nursing care, certified nurse aides - CNAs, equipment, medications) [13]. Hospice CNAs, nurses, and administrators express frustration when balancing the needs and wishes of patients and families with regulatory requirements [10]. Overall, live hospice discharge is difficult for all involved, yet few studies have focused on the patient, family and hospice staff experiences of live discharge [14].

1.2. Theoretical Framework

Hospice care encompasses a commitment to patient-centeredness [2]. Patient-centeredness is an evolving concept where patients and providers share decision-making and enact a care plan reflecting mutually agreed upon goals and decisions within the context of illness and patient preferences [15, 16]. Research has extended this concept to distinguish patient-centered communication from patient-centered care, challenging measurement approaches and advancing theoretical definitions about whether patient-centeredness is a communication style, an approach to care delivery, or both [17].

Patient-centered communication is a way of engaging in patient- family-provider discussions that draw upon values and goals to improve healthcare processes and outcomes [2]. A commonly accepted definition of patient-centered communication emphasizes ongoing communication between patients, families, and providers that elicits understanding of patient perspectives within the context of unique psychosocial and cultural contexts [18]. Patients are seen as partners with healthcare providers where preferences, values, cultural traditions and socio-economic situations are respected. Another way to operationalize patient-centered hospice communication is that discussions of patient values and preferences allow a self-determined life closure. This lets patients and families determine how they wish to live in the final stages of life.

Patient-centered care addresses the implementation and outcomes of patient-centered communication, emphasizing the intersection of patients, families, and providers within the larger healthcare system [18]. Patient-centered care aligns a healthcare system’s mission with patient and family goals in a collaborative and coordinated fashion [19]. Hospice care assists quality of patient life by relieving physical, emotional and spiritual suffering. Similar to patient-centered communication, optimal patient-centered care is theorized to improve patient outcomes [19].

Hospice staff regularly engage in patient and family-centered communication as they provide end-of-life care. However, for some, regulatory constraints limit ongoing communication, ending relationships and the shared understanding that has been achieved and/or forestalling necessary future communication between patients, families, and hospice providers as the patient declines [7, 8]. The CMS hospice benefit Conditions of Participation was originally developed using a cancer model where the trajectory of patient decline and death is predictable. As hospice use increases beyond cancer patients those with other diagnoses now comprise the majority of hospice admissions [20]. For patients whose prognostication of death is difficult due to intermittent or gradual decline (e.g. cardiac, pulmonary, and Alzheimer’s diseases), the onset of hospice care may be delayed due unpredictable decline despite a clear indication of the need for hospice services [12]. In situations where decline does not occur within six-months, a consistent requirement for ongoing hospice eligibility, patients may become ineligible for hospice services, experiencing involuntary live hospice discharge and subsequent hospice readmission. Live hospice discharge and delayed hospice admission are two examples where patient-centered care is not fully achieved because of CMS policy constraints, suggesting that a “one size fits all” approach to hospice care should be re-examined. Thus, the purpose of this study was to examine the prevalence of live hospice discharge, and to understand the experiences of families and hospice staff who have experienced live hospice discharge.

2.0. Methods

2.1. Approach

This study represents a mixed-method approach integrating administrative data for hospice admissions and discharges with family and hospice staff narratives obtained using interviews and focus groups. We partnered with a large not-for-profit hospice agency in the western United States who supports nine regional offices serving both urban and rural communities. Informed consent documents were reviewed then consent obtained prior to participation. Each participant received a $20 gift card. Institutional Review Board approval was obtained prior to study initiation.

2.2. Data Sources

A review of hospice admissions and discharges across all regional offices from 2013 to 2017 allowed us to assess the prevalence of live discharge for this agency and then compare data with national accounts of live hospice discharge rates [3, 12, 21, 22]. These data provide context for the prevalence of live hospice discharge and supports the narratives of families and hospice staff.

Narrative data came from individual telephone interviews with family caregivers of patients who had experienced live discharge, an interview with one hospice administrator, and a series of hospice staff focus groups. Focus group methodology was used to generate relevant data through the interactions between participants with pertinent experience and opinions [23]. Experiences of hospice staff and hospice families were unique, yet the data showed such similarities about how a live discharge was handled and experienced that this sample provided a rich set of exploratory data on this understudied topic.

2.2.1. Narrative Data Collection

Five family caregivers representing differing patient diagnoses (e.g. Multiple Sclerosis, Pulmonary, Cardiac, Kidney disease, Stroke) who had experienced live discharge, were interviewed individually by telephone. Interviews were on average 30 minutes.

Six hospice staff participated with each participant engaging in two distinct data collection events. In-depth discipline-specific focus groups were held in-person with three hospice nurse aides, and two hospice nurses. An in-person interview was conducted with the sole hospice administrator [24, 25]. Discipline-specific discussions were followed by a discipline-combined focus group with all 6 hospice staff. This approach enabled each participant to engage in two data collection experiences: expertise-specific discussions to avoid any perceived power differential among staff that might have forestalled conversation or silenced voices, and a larger discipline-combined group representing the hospice staff as a whole. Discipline-specific focus groups were about 1 hour in length, and the discipline-combined focus group was an additional 90 minutes.

Focus group discussions and interview prompts were aligned allowing each methodology to explore 1) why live discharge might occur, 2) the positives/negatives of live discharge, and 3) the process (sequence, timing) of live discharge [Table 1]. All interviews and focus groups were audio-recorded and transcribed.

Table 1.

Questions and Prompts Used to Guide Interviews and Focus Groups with Family Caregivers and Hospice Staff.

	Family Caregiver	Hospice Staff
Intro	What was hospice like for you, your family, and PT’s Name? We would like to talk specifically about your experience when hospice ended.	We would like to talk to you and your staff about what happens when you have a patient who is no longer eligible for hospice – when a “live discharge” occurs.
When and how do you know?	When did you first get the inclination that Name would be taken off of hospice? What gave you that sense?	When or how do you know if a patient is at-risk or in need of a “live discharge”? Who and how do you communicate this across your team?
How does it happen?	What was the experience like for you? Were there any positives? Any downsides?	What are the procedures when a “live discharge” has to occur?
Who does it affect? How?	How did the end of hospice affect the patient, you, other family members?	How does a “live discharge” affect the staff? How does it affect your relationship with the patient and family?
What happens after?	What happened after hospice ended? How are you dealing with this?	What happens after the “live discharge”? How does the hospice team deal with this?

2.3. Narrative Data Analysis

We used Descriptive Qualitative Analysis to adhere closely to the original narratives, accepting participant comments as representative of their experience and opinions [26, 27]. Moreover, the larger combined-discipline focus group replicated the naturalistic setting of an interdisciplinary team meeting, as confirmed by the participants and research staff who have experience in such meetings. Sandelowski refers to this as a “data-near” method that permits us to accept participant accounts as given, and fostered respect for the experiences of family caregivers and staff [26, 27].

Interviews and focus group transcriptions were reviewed and analyzed systematically using NVivo12 [28]. Initially, each thought unit was coded and categorized. A list of structural codes was generated and used to categorize and organize segments of data by content and concept [29]. Initial codes, based on similarity of narrative phrases, were grouped to produce more condensed themes. Saturation was considered achieved when successive responses were repetitive and congruent with earlier comments, and no further categories were identified [30, 31]. Finally, in adherence to the standards of qualitative scientific rigor, multiple authors (BLINDED) reviewed the initial coding strategy and categories affirming the most relevant themes, generating a cohesive summary of the live discharge experience from the perspectives of families and hospice staff. Selection of supporting quotations was based on representing identified content themes [32–34]. The methodology and presentation of results aligns with published Standards for Reporting Qualitative Research [34].

3.0. Results

3.1. Prevalence of live hospice discharge

Of the 5,648 hospice admissions occurring between 2013–17 across all nine agency sites, 14% (795 patients) were discharged alive. The most prevalent admitting diagnoses were cancer (43%), dementia (22%), and cardiac conditions (14%). In contrast, the most prevalent live discharge diagnoses were dementia (n=150; 19% of all patients with a dementia hospice admitting diagnosis), cancer (n=283; 13% of patients with a cancer admitting diagnosis), and cardiac conditions (n=96; 8.5% of patients with a cardiac admitting diagnosis). As expected, there was geographic variation with urban sites admitting and discharging more patients than smaller rural sites. Patient gender was balanced. A majority (75%) had Medicare insurance. Demographic characteristics and live discharge trends are consistent with other studies [3, 12, 21, 22].

3.2. Themes illuminating the experience of live discharge

Qualitative analyses of family caregiver interviews identified three themes: 1) Attitude and experience with hospice, 2) Discharge experience, and 3) Continued need/desire for hospice following discharge. Staff comments from discipline-specific and discipline-combined discussions represented: 1) Discharge circumstances, 2) Regulatory guidelines and 3) Changing practice to meet regulatory guidelines. Together, these themes illustrate the multiple and varied impacts of live hospice discharge on families, patients and hospice staff.

3.3. Family caregiver perspectives on live hospice discharge

3.3.1. Attitude and experience with hospice

Family members valued hospice care. One family member who was initially reluctant to enroll the patient into hospice remarked, “Finally, when I says, ‘Okay, let’s look at hospice.’ When the hospice came in they just took so much stress from me.” Another commented: “One thing I really liked about hospice was I used to have to take her to the doctor every couple of weeks to have her blood taken—but hospice did that.”

3.3.2. Discharge Experience

While all family caregivers were generally satisfied with the hospice care, they typically reported distress when confronted with the possibility and subsequent reality of a live hospice discharge. Caregivers were troubled by uncertainty and what the future would hold after hospice discharge. One family member spoke of the impact of live discharge:

My other sister, I think she’s still trying to wrap her head around all of it. She’s got young kids and she told them, “hey, grandma’s dying,” they prepare for grandma dying. My one niece started getting very depressed and cutting herself and everything else trying to deal with it. Then all of a sudden, “Okay, grandma’s not dying.” That’s a really hard thing to explain to children.

Another relayed:

And like I said, now I’m in the transition where it’s [hospice] basically gone and I’m back to where I started with again. So, it’s frustrating because I wish Medicare and the insurance would… I don’t know. I don’t know. I don’t have the answers.

These patients/caregivers still needed and wanted hospice care and resources:

[The discharge] just created a lot more bills. We need to now pay for our own prescriptions. We do not have any prescription insurance. Another thing, like, she’s on oxygen.

One patient voluntarily left hospice to participate in a clinical trial. This family expressed excitement and hope for the future, rather than distress, in the face of live hospice discharge. This contrast provided a stark reminder that voluntary live discharge is not the same experience as involuntary live discharge. Both were losing hospice services however voluntary discharge represented an opportunity to meet patient-centered care and treatment goals. For those who experienced involuntary discharge the end of hospice services meant that their care goals were no longer being implemented.

3.3.3. Continued need/desire for hospice

Several family caregivers noted the unfortunate irony or “Catch 22” of live discharge; hospice services facilitated patient stabilization yet also rendered the patient ineligible for continued services. Most families expected continued patient decline and did not view hospice discharge as a reprieve but rather as a certainty that the patient would suffer:

They took her off of hospice, which I understood they had to take her off because she did not certify for hospice. They said, ‘We’ll go ahead and put you on home care.’ They immediately sent people in to do occupational therapy and physical therapy with her. However, she no longer had the pain patches; therefore, she could not do the physical therapy and occupational therapy.

Many caregivers anticipated a return to hospice when the patient’s condition declined and eligibility was again possible:

I’ve got to keep going, obviously. We’ve got to keep going forward. I’ll be honest with you. There’s probably going to come a time where I will have to call hospice again. I’ll be honest. I wish it would have continued on.

Family members expressed frustration that the patient’s slower decline restricted hospice eligibility and compromised care continuity.

They need something in-between for people who have a chronic condition, [even though] they are not dying now. They need some kind of pain control and they need to be able to have medical professionals checking on them.

3.4. Hospice staff perspectives on live hospice discharge

3.4.1. Discharge circumstances

Just as families found live discharge distressing, so did hospice staff as relayed in both discipline-specific and discipline-combined discussions. Staff had to learn how to prepare patients and families to navigate toward death without the support of coordinated hospice care and found live discharge of their patients unsettling. Overall, live discharge was reported as one of the most stressful aspects of hospice by nurse participants. As one nurse summarized, “I feel like, I hate to use the word abandonment but I do kind of feel like we’re abandoning them.”

One staff member commented on the collective awareness of a patient’s potential discharge in an interdisciplinary team (IDT) meeting:

It goes quiet. The whole team will go quiet, physically, when the doctor says, “Is there anything else?” And then it’s like crickets, because everybody kind of comes to this realization. It gets like a physical silence when they come to this realization there’s nothing more that can be done to try to qualify them.

While administrative staff and nurses are involved in IDT meetings, CNAs are usually not included. CNAs often have the most direct and frequent interaction with families and patients, yet said they were blindsided by the patient’s live discharge as they were the last to find out. “The CNAs are not in IDT you don’t always get the information and you’re with the families.” Nurses agreed: “They [CNAs] take the brunt of poor communication. They get notified probably…but they might be notified by the patient. It’s sad. We should really be notifying them [immediately]…they deserve better.”

3.4.2. Meeting regulatory requirements

The primary reported reason for live discharge was regulatory pressure, identifying an unequal risk of live discharge for patients who stabilized or did not deteriorate rapidly enough to retain hospice benefit eligibility. As one nurse explained, staff need to be aware of CMS eligibility requirements to initially certify and recertify patients for hospice care:

Let’s use an Alzheimer’s patient as an example. They’ve been on now for nine months, CMS is looking, you know. The standard is six months and now you’re re-certifying them again for another sixty days. If they [CMS] don’t feel they’ve seen enough decline. … They feel, from their end, we’ve not documented enough to show the decline, to show the patients’ eligibility. And then they [CMS] will deny the claim.

Administrative staff talked about the importance of being proactive when communicating with families and patients at risk of live discharge to maintain compliance with CMS regulations while also providing transparent information about the reality of an impending live discharge. “So that’s why I educate on admit. It’s giving this family the understanding that we have criteria and if we can’t meet it, then it is not such a shock…and then, by that time I can say, ‘hey remember those qualifiers we talked about? She’s not making them.”

3.4.3. Altering practice to meet regulatory guidelines

Despite efforts to inform patients and families of eligibility criteria staff felt a need for change due to perceptions of distress and even failure as a team as they notified patients and families of potential live discharge, “Because they want to take care of their people. They love these patients and they’ve seen the same things we are.” Staff felt that patients decline following the revocation of hospice services, “We take them off hospice and they crash.” Some felt responsible for the loss of services that accompany a live discharge noting the planning required to prepare patients and families for live discharge:

A lot of people depend on that shower aide, their CNA. That’s the biggest thing I think that they hate to lose. It’s because they still might be ill; they just aren’t going to die yet. They’ve become dependent on somebody helping them bathe or get dressed, or help them with their meal. Now we have to teach them how to do it themselves. Or, provide resources if they can privately pay.

Another nurse noted that, “you’re taking away so much support and daily supervision and friendships that have developed from chaplains, social work, supplies, all their incontinent supplies. I mean, it’s a financial component.”

All types of staff agree that they feel personally responsible for their patients, and they try to prepare patients and families for an impending live discharge to minimize disruption and find sustainable options for hospice care and services. One nurse emphasized, “The live discharge should be done methodically. It should not come as a surprise. Now it is up to the hospice to make sure that the transition to a new primary provider is in place with report given.”

4.0. Discussion and Conclusion

4.1. Discussion

Cancer patients were hospice early-adopters; since 2008 non-cancer diagnoses comprise the majority of hospice users. Between 2000–2010, the mean hospice stay increased from 54 to 86 days [20] reflecting greater use by those with more slowly progressing disease trajectories. Persons with Alzheimer’s disease and related dementias are presently the third highest hospice users in the US, accounting for 18% of patients versus Cancer 27% and Cardiac 19% [5]. The 2016 elimination of “debility” and “adult failure to thrive” CMS Hospice Benefit eligibility codes may underly the increasing trend of live hospice discharge, given the challenges of recertifying patients with cardiac, respiratory and dementia diagnoses who stabilize or decline too slowly [35].

In this study 14% of hospice patients experienced live discharge, with involuntary live discharge more common among patients without clear decline [3, 12, 21, 22]. Families and staff noted the frustrating paradox of patient benefit from hospice care (e.g., improved symptom management and comfort) yet who, because of this care, became ineligible for continued hospice services. Together, these data provide perspective on how live hospice discharge may preclude meeting patient-centered communication and care goals, and a patient/family-driven life closure.

Families who experience involuntary live hospice discharge due to a lack of continued eligibility reported a desire to continue hospice services yet families and hospice staff felt they were now unable to maintain the patient’s palliative care goals. This indicates that patient/family values, goals, and preferences were shared and known to hospice staff, but because of policy constraints were not able to be met.

While our results indicate that patient-centered communication occurred (goals, values were known and discussed), patient-centered care was precluded when involuntary live discharge occurred. From the staff perspective provision of high-quality care aligned with the patient/family’s goals and daily needs was abruptly ended, causing staff tension and distress. Families who lose their hospice benefit often cannot afford to pay out-of-pocket for services such as a CNA, essential for caregivers who cannot help patients with routine, physically demanding tasks (e.g. bathing) creating a fissure in the provision of patient-centered care. Like families, staff mentioned how disruptive involuntary live discharge was in their ability to provide patient-centered care. Many staff felt that patients will return to hospice with enhanced symptoms and worse quality of life after a period of time without hospice services.

Involuntary live discharge occurring as a result of CMS Conditions of Participation ineligibility may not match the realities of end-of-life patient decline (including cancer patients who also experience slower than anticipated decline). Our analyses reveal that hospice eligibility regulatory guidelines are an impediment to fully achieving end-of-life patient-centered care even when patient-centered communication has occurred. Staff discussions about proactively planning for a potential live discharge offer examples of how hospice staff enact patient-centered communication from admission to discharge, whether by death or live discharge. Although involuntary live discharge may not be aligned with patient and family end-of-life goals transparent communication can help prepare patients and families for this possibility.

4.2. Conclusion

Overall, frustration and fear are experienced by patients, families and hospice staff as they cope with the realities of an involuntary live discharge. Hospice staff tried to prepare for patient care continuity (e.g. using home-health agency referrals) and to emotionally support patients and families, however CNAs were often unaware of these proactive planning conversations, leading to frustration and a perception of being left out of the decision-making process.

4.2.1. Policy Implications:

Regulatory guidelines for hospice eligibility need increased flexibility to accommodate protracted and less predictable patient decline. Patients, families, and hospice staff need alternative ways to support patients and families when live hospice discharge is necessary.

4.3. Practice Implications

When live hospice discharge is anticipated planning and transparent communication help achieve a smooth transition whether the discharge is voluntary or involuntary. Even when planning occurs, involuntary live discharge creates disruption in care continuity, threatening delivery of patient-centered end-of-life care. Education and training for these “crucial conversations” may assist hospice staff to maintain relationships and provide optimal care. Longer term, nurses are in an ideal position to advocate for transparent patient and family-centered communication and inclusive IDT discussions that include CNAs. Hospice and palliative care nurses can contribute to policy change through professional organizations and stakeholders to implement change in CMS hospice Conditions of Participation.