Abstract
Abstract
Background:
Approximately 259,000 patients were discharged alive from U.S. hospices in 2010. There is a paucity of research describing the experiences of these individuals and their family members.
Objective:
The study objective was to explore the experiences of adults discharged from a hospice program due to decertification related to ineligibility or extended prognosis, from the perspective of the individual and his or her adult family members. Research questions were, How do participants perceive and describe (1) the experience of being discharged alive from hospice, and (2) their quality of life after a live hospice discharge?
Methods:
A transcendental phenomenological design guided this study. Purposive, snowball sampling was used to recruit 12 volunteers, aged 35–92 years, who had experienced live hospice discharge due to decertification. Data collection included open-ended interviews and journals.
Results:
Findings included two primary themes: suffering “AS…” and the paradox of hospice discharge. These primary themes were supported by 12 subthemes: abandonment, unanswered questions, loss of security, loneliness, uncertainty, anger and frustration, physical decline, bearing exhaustive witness, having and needing support, mixed feelings, not dying fast enough, and hospice equals life.
Conclusion:
Understanding this experience may enhance understanding and aid health care providers to anticipate the unique needs of the hospice population.
Introduction
T
Admission and discharge characteristics of hospice patients are well documented. 3 Over the last 30 years, hospice admission diagnoses have shifted from malignant diseases to nonmalignant chronic illnesses. Furthermore, patients with nonmalignant chronic illness have higher live discharge rates than those with malignant diseases. 2 Almost two-thirds (61.7%) of hospice patients have chronic terminal illnesses requiring symptom and pain management; 4 however, predicting death often proves difficult because of the disease processes involved. 5 Indeed, Lynn and Forlini reported that many chronically ill patients have a 50% chance of surviving for six months the day prior to their death. 6 The difficulty in accurately predicting a six-month demise for patients with nonmalignant diagnoses means that thousands of U.S. patients are discharged from hospice due to ineligibility or extended prognosis only to die shortly thereafter.2,7,8 These patients are effectively denied the benefits of hospice and potentially suffer negative outcomes as a result; it is also possible that live discharge from hospice may have adverse effects on patients' quality of life and health status, resulting in increased patient suffering. 9
Methods
Design
This transcendental phenomenological study seeks the universal meaning or essence of being discharged from hospice alive as shared by those experiencing it. Moustakas's transcendental phenomenological design that guided this study 10 is based on Edmond Husserl's philosophy of subjective openness. 11 As interpreted by Moustakas, transcendental “adheres to what can be discovered through reflection on subjective acts and their objective correlates;” and phenomenology “utilizes only the data available to consciousness —the appearance of objects.” 10
Moustakas stresses that “intervening caring” means to “attend fully, to feel some responsibility for, to want to protect from further pain,…to watch over in a protective and supportive way, to feel compassion for…. Caring means to enter [the other's] world, to understand the views, feelings, and experiences.” 12 His notion of “anticipatory caring as a concernful presence” 12 speaks to the essence of being-with another during a period of breakdown or suffering. Moustakas's notions guide understanding the essence of the phenomenon of being discharged alive and provide the philosophical underpinnings for this study.10,11
Collection
Understanding the phenomena from the perspective of those who have lived it was achieved through in-depth interviews with the intent to capture the meaning of the live hospice discharge experience in the participant's own words. Interviews were conducted using unstructured open-ended questions. The initial interview question was, “Tell me about being discharged from hospice.” Probe questions including, “Tell me more about that” were used to gather additional information or clarify statements. Interviews lasted from 30 minutes to two hours. Each participant was interviewed twice to develop rapport through prolonged engagement. All interviews were audiorecorded and transcribed verbatim.
Participants completed a demographic form consisting of information on age, race, gender, diagnosis, and hospice discharge date. Field notes and journals were kept to record participant behaviors, including expressions and mannerisms or other data pertinent to the setting of the interview, to monitor personal assumptions and bias throughout the research process, and to establish a decision trail in order to inform future interviews or data analysis.
Analysis
In accord with Moustakas's interpretive approach, each interview transcript was read several times to allow the researcher to become familiar with the data and identify statements relevant to the experience of live hospice discharge. 10 He refers to these statements as the invariant meaning units. These meaning units were then clustered into themes. A textural description of the experience was developed using the meaning units and themes.
These descriptions are highly detailed, giving the experience context and depth. After reflection on each textural description, a structural description of the experience was developed. As textural and structural descriptions were merged, the fundamental meaning or essence of each individual's experience was revealed. Finally, a composite description was synthesized by integrating all individual descriptions into a universal description.
Moustakas's approach enables researchers to maintain the uniqueness of each participant's lived experience, while allowing a description and understanding of the composite essence of the phenomenon. 10
Sample
Purposive sampling design utilizing network snowball sampling was employed to recruit 12 volunteers. Recruitment was limited to volunteers who were 18 years of age or older, who had been discharge from hospice alive due to decertification or adult family members of individuals who had been discharged from hospice alive. Potential participants must have had the ability to speak and understand English, and must have been willing to participate in interviews. No participants were excluded based on race, ethnicity, gender, religion, or socioeconomic status.
Recruitment was achieved with the assistance of several local area hospice organizations and began after institutional review board approval was granted. Participating hospice agencies identified potential volunteers and sent each a recruitment flyer detailing the study and the primary investigator's contact information. Persons who were interested in participating in the study then contacted the researcher. Participants were also asked to refer potential volunteers for recruitment.
Setting
Interview locations were determined by the individual participants. All data collection, including the enrollment process and interviews, occurred at a time and place of the participant's choosing, typically the participant's residence.
Results
The current study findings are reported along with the primary themes: suffering “AS” and the paradox of hospice discharge.
Suffering “AS”
Suffering is the act of feeling or enduring pain or distress; sustaining injury, disadvantage, or loss. 13 The “AS” in the theme suffering “AS” is a meaning-structure and refers to how a phenomenon is interpreted—the meaning of that phenomenon to an individual. The primary theme and subthemes demonstrate the how of suffering in this phenomenon. The eight subthemes that support the primary theme suffering “AS” are abandonment, unanswered questions, loss of security, loneliness, uncertainty, anger and frustration, physical decline, and bearing exhaustive witness.
Abandonment
Abandonment implies the withdrawal of help or support or the leaving behind of someone meant to be a personal responsibility. 14 Participants in this study convey feeling of abandonment. Hospice simply stopped coming or left the families feeling lost or forsaken. Feelings of abandonment certainly added to the anxiety and desperation some participants shared as they described their experience.
I felt angry and frustrated and abandoned…. My husband cried. He thought nobody cared about him. He cried. It's like you are not worthy, you are not worth our time. –Bobbie
Unanswered questions
Participants reported having unanswered questions regarding their experience. Many of these questions were standard discharge planning topics. Others were more fundamental and related to the reason for discharge. These participants were unsure why they were discharged and reported having a great deal of difficulty immediately following the discharge securing the services and care required.
What do we do now? Where do we put him? What do you do afterwards? Where do you go? –Chelsea
Loss of security
Security is the feeling of being safe and protected; freedom from worry or loss. 15 The participants of this study state that the loss of security was a major concern after discharge. While on hospice service they felt confident everything would be taken care of in the event of an emergency. Now, off of hospice services, they are acutely aware of how alone they are. Surprisingly, this feeling is more pronounced in the transcripts of family members than the patients themselves.
I know that there'd be somebody there to check on me. –Adam
Loneliness
Similar to loss of security is the feeling of loneliness. Different from physically being alone, these participants are bearing the burden of their own, or their loved one's death in a way that they feel alone in the journey. For some, it is the close companionship of others that eases this burden. For others, even with family and friends around, they feel alone in the responsibility to care for their loved one. Hospice provided a respite from this loneliness through the presence of staff, the reduction of responsibility, or simply time away to tend to self. Discharge from hospice represents a return to that loneliness.
On hospice you knew that you were never, never alone. –Brooke
Uncertainty
Uncertainty ultimately relates to communication or lack thereof. These participants related their understanding of the discharge as nebulous, i.e., more potential than reality. As merely a potential, the discharge process did not take on the urgency or importance participants could understand until it was too late, leaving the patient and family without access to necessary equipment or care. This uncertainty associated with the pending discharge lends itself to fear of the unknown and ultimately the next theme, anger and frustration.
I remember the off and on. I remember the uncertainty…the conflict of information. There was a lot of that in the very beginning, because the nurse said, “We cannot continue to see you,” and the social worker could not explain the reasoning behind the discharge at first. It seemed like she was trying in many ways to get the situation remedied so that he did not have to be discharged from hospice; this went on for a couple of months. –Bobbie
Anger and frustration
Participants clearly articulated their feelings of anger and frustration regarding the hospice discharge. This anger and frustration comes largely from a lack of effective communication between hospice staff and family members. These participants were angered not only by the loss of services that they had come to rely on and value, but also the manner in which the services were removed.
When he was on hospice, it was the best our family ever had. That's why we are so angry: because we had the best and they took it from us and they took it away. He was more independent, he was happier, he was better than he had ever been and they took it from us. That's what we are angry about. –Casey
Physical decline
In the theme physical decline, the participants discuss the deterioration of health after hospice discharge. Although not all participants experienced this aspect of the phenomena, for those that did, it was extreme and powerful and usually preceded the patient's death.
It wasn't much life—just like a zombie sitting here. I'd go for days at a time without oxygen, because I'm trying to learn not to use oxygen, because I'm not going to have it. –Alfred
Bearing exhaustive witness
Bearing exhaustive witness refers to the pain and helplessness endured by the family member participants. These participants help us to understand that suffering is not only the physical pain experienced with disease, but it is also the anguish of helplessly watching those we love wrestle with illness and disability.
I feel like I was screaming and yelling, and I was pleading and pleading and pleading, “Please, help us! Please help us!” and nobody seemed concerned. “It's not my job. I'm sorry, it's not my problem. I have other things, I have my own life to deal with, I can't deal with yours. And it's not important to me if your husband dies.” I just feel like I was just a failure. I was supposed to be taking care of him and I allowed them to just terminate him [crying]. I didn't want that, I didn't want him to be terminated. He didn't want to—he said, “I want to live.” –Bobbie
Paradox of hospice discharge
A paradox is a tenet or proposition contrary to received opinion; an assertion or sentiment seemingly contradictory, or opposed to common sense; that which in appearance or terms is absurd, but yet may be true in fact. 16 The paradox of hospice discharge is exactly that—seemingly contradictory, opposed to common sense, yet true. Four subthemes shape the paradox of hospice discharge: having support & needing support, mixed feelings, not dying fast enough, and hospice equals life.
Having support and needing support
Having support and needing support is a subtheme that encompasses the time before, during, and after hospice discharge. Participants attribute great value to the support they received from their family and hospice team members. For some, the support received gave them the confidence to move forward after their discharge. For others, discharge represented a loss of support they could not find outside of hospice.
I felt like I had a pretty good caregiver, and I had a pretty good organization looking out after me. So then they come along, and said, “Well, you know, it's in remission, so nothing we can do right now.” So that made me feel a lot better. –Adam
Mixed feelings
Several participants reported mixed feelings regarding their hospice discharge. There was relief at the notion of not being labeled as dying. However, the knowledge that the disease remained dampened the feeling. As most of the participants were enrolled into hospice primarily for chronic disease processes, they recognized the variable nature of the continual exacerbations and periods of improvement and realized the potential for relapse.
Well, it was mixed feelings. That's a pretty serious thing. I wasn't too excited to be in hospice. That's kind of a finalistic kind of thing. –Alec
Not dying fast enough
Not dying fast enough to qualify for services is a theme seen throughout the transcripts. The participants of this study understood the eligibility requirements established by the Centers for Medicare and Medicaid Services were created to protect the system from abuse. They also understood the disease processes that enabled their enrollment onto hospice in the first place, although terminal, were not producing a quick enough demise to remain on hospice. This knowledge caused some frustration and anger at somehow being blamed for failing to die according to some abstract schedule that is not congruent with their disease process.
You're not cooperating by dying when we thought you would, and you stabilized instead; so we're going to have to discharge you. –Andrew
Hospice equals life
Almost counterintuitive to our society's understanding of hospice, the participants in this study equate hospice with life, not death. Through the support, care, and equipment provided by hospice, these participants were able to remain out of hospital and stabilize. There was no intent to seek a cure by these participants—only a desire to live to the potential allowed by their disease. The loss of hospice represents a return to dying and suffering.
I figure if it wasn't for them, I'd have been dead a long time ago, because I was going to get to the point where I wasn't going back in the hospital anymore…. I mean, you go in a week, come home a week, go back the next week. That gets old…. I think hospice has kept me living. –Alfred
Discussion
Suffering is the feeling of being alone, alienated, estranged from the community one feels part of. This can be particularly distressing for the chronically ill. 17 Whether it is the understanding of the terminal status of the underlying disease process that preceded the hospice enrollment or the attachment developed while part of the hospice community, participants reported being distressed by the discharge. Discharge from hospice leaves the patient and families in a place that might be described as the in-between of living and dying. No longer are they a member of the hospice community, actively dying and eligible for the care and support they have become accustomed to. Still yoked to a disease that is terminal, they are no longer part of the living either.
Conclusion
The narratives in this study are fraught with paradoxes. Yet the true paradox of hospice discharge is we are surprised by its complexity. Findings of this study support the assumption that the challenges met by patients and families during transition into hospice might be the same challenges encountered during the transition out of hospice.
The Centers for Medicare and Medicaid Services has guidelines regarding hospice discharge:
“The hospice notifies its Medicare administrative contractor and Survey administrator of the circumstances surrounding the impending discharge. The hospice should also consider referrals to other appropriate and/or relevant state/community agencies or health care facilities before discharge.” 18
This provision falls short regarding instructions as to how a hospice agency might provide services or to what extent services are required. A dilemma exists in the situation of live hospice discharge. Must we wait for instructions from a regulating body, or should we instead rely on our own ethical stance as health care professionals to do the right thing? Somehow we must provide support to patients and families in need and in doing so we can reduce suffering and improve care. However, we must also provide funding and resources for these services. Without a mandate from a payer source, hospice organizations will be unable and in some cases even barred from providing them.
Footnotes
Author Disclosure Statement
No competing financial interests exist.