Perspectives of Caregivers and Clinicians on a Concurrent Hospice and Dialysis Program: A Qualitative Analysis.

Most people receiving dialysis are hospitalized in the last month of life, and nearly half of them undergo intensive care.1Wong S.P.Y. Kreuter W. O’Hare A.M. Treatment intensity at the end of life in older adults receiving long-term dialysis.Arch Intern Med. 2012; 172: 661-663https://doi.org/10.1001/ARCHINTERNMED.2012.268Crossref PubMed Scopus (0) Google Scholar Although hospice positively impacts end-of-life outcomes,2Kavalieratos D. Corbelli J. Zhang D. et al.Association between palliative care and patient and caregiver outcomes: a systematic review and meta-analysis.JAMA. 2016; 316: 2104-2114https://doi.org/10.1001/JAMA.2016.16840Crossref PubMed Scopus (0) Google Scholar patients receiving dialysis are half as likely to receive hospice services compared to the general Medicare population.3Wachterman M.W. Hailpern S.M. Keating N.L. Tamura M.K. O’Hare A.M. Association between hospice length of stay, health care utilization, and medicare costs at the end of life among patients who received maintenance hemodialysis.JAMA Intern Med. 2018; 178: 792-799https://doi.org/10.1001/jamainternmed.2018.0256Crossref PubMed Scopus (50) Google Scholar Limitations of the Medicare hospice benefit, which requires hospices to cover the cost of care related to the terminal diagnosis, may serve as a barrier to timely hospice access. We previously described outcomes of a concurrent hospice-dialysis program that allows patients to continue comfort-focused dialysis while receiving hospice. Enrollees had a longer median hospice length of stay compared to national trends for patients with end-stage kidney disease (9 days vs 5 days, respectively), and half of the enrollees received no dialysis treatments after program enrollment.3Wachterman M.W. Hailpern S.M. Keating N.L. Tamura M.K. O’Hare A.M. Association between hospice length of stay, health care utilization, and medicare costs at the end of life among patients who received maintenance hemodialysis.JAMA Intern Med. 2018; 178: 792-799https://doi.org/10.1001/jamainternmed.2018.0256Crossref PubMed Scopus (50) Google Scholar,4Ernecoff N.C. Bursic A.E. Motter E.M. Lagnese K. Taylor R. Schell J.O. Description and outcomes of an innovative concurrent hospice-dialysis program.J Am Soc Nephrol. 2022; 33: 1942-1950https://doi.org/10.1681/ASN.2-22010064Crossref Google Scholar This study describes the perspectives of participating caregivers and clinicians. We conducted semi-structured interviews with caregivers of deceased patients enrolled in the program and clinicians who either referred or cared for patients in the program. We conducted interviews to thematic saturation within and across caregivers and clinicians. We analyzed all interviews using template analysis.5Crabtree B. Miller W. Doing Qualitative Research.2nd ed. Sage Publications Ltd, 1999Google Scholar The supplementary material provides full methods (Items S1-S3). The Institutional Review Board at the University of Pittsburgh approved all study procedures. Table 1 contains participant characteristics. We identified 4 themes, consistent across caregivers and clinicians, that describe perceptions and feedback on the program (Box 1).Table 1Participant CharacteristicsTotalN = 22 (%)CaregiverN = 9 (%)ClinicianN = 13 (%)Female14 (64%)6 (67%)8 (62%)Age, mean (range)46 (29-65)-46 (29-65)Ethnicity White19 (86%)8 (89%)11 (85%) Asian1 (5%)-1 (8%) Black or African American1 (5%)1 (11%)- Prefer not to report1 (5%)-1 (8%)Relationship to patientSpouse/significant other6 (27%)6 (67%)Child2 (9%)2 (22%)Sibling1 (5%)1 (11%)Clinician titlePhysician5 (23%)5 (39%)Advanced practice practitioner2 (9%)2 (15%)Nurse2 (9%)2 (15%)Social worker2 (9%)2 (15%)Clinical nurse manager2 (9%)2 (15%)Clinician specialtyPalliative care4 (18%)4 (31%)Hospice5 (23%)5 (39%)Dialysis4 (18%)4 (31%)Nephrology2 (9%)2 (15%)Other1 (5%)1 (8%)Years of practice, mean (range)16.5 (3-40)16.5 (3-40) Open table in a new tab Box 1Themes and Example Quotes Describing Caregiver and Clinician Experience With the ProgramTheme 1: Dialysis complicates the end-of-life experience.Hospital utilization intensifiesCaregiver: Those last couple weeks […] were absolutely grueling. He was in and out of the hospital.Dialysis clinic social worker: These patients go into the hospital, and they're clearly at the end of life, and they're continuing to have treatments and other invasive procedures.Patients decline clinically on dialysisNurse practitioner: These people seem to be just very chronically ill, and it seems like they do a lot of suffering up to the point where they decide this [dialysis] isn’t working.Hospice physician: This patient just went through dialysis and now they’re agitated and uncomfortable and moaning.Complexities cause late hospice referralDialysis clinic social worker: They'll have frequent hospitalizations. They're in and out, or back in the clinic. They end up, usually, in my experience, being admitted to the ICU and then dying within the hospital. And hospice has been too late at that point.Palliative care physician: Life expectancy is really short for some of these patients when you stop dialysis. And so, you might have a very small window to work with […] so they really miss out on the benefits of that kind of support.Dialysis impedes transitions near the end of lifeCaregiver: He was still convinced, and we finally could not go to dialysis any longer. I mean, he was flailing. “I have to go, I have to go [to dialysis].” And I was like, “[Patient], I can't even get you in the car.”Hospice manager: The weight of stopping dialysis is so heavy that it takes so much time and planning and conversation to get a family and a patient to that point to see the benefit of it or just to say, “Yes, I'm ready to stop doing that and putting my body through that.”Theme 2: The program provides a bridge to hospice.Continuing dialysis eases patient and caregiver distress and provides psychological supportCaregiver: What it means is, she's not shut off. The door is open and she can go through that door and receive dialysis, 10 treatments. She could have never gotten to 10 treatments, but she knew she could [have them].Palliative care physician: Just knowing that it's an option sometimes really alleviates a lot of the fear and the sense of abandonment that can come with these really tough decisions.Dialysis becomes goal-focusedCaregiver: He didn’t have to do it for the 3 hours. All he had to do was stay as long as his body and his brain could handle it. And those aspects were extremely important to both of us.Hospice nurse: I think it pulls into focus how patients want to live. Yes, I want to still be able to get dialysis and it’s ingrained in me, but this is what I do to take care of—and try and keep on doing until […] I can't do it anymore.Program allows flexibilityDialysis clinic nurse manager: We all assess the patient. And then we adjust it for the patient. You don't run them for 3 hours, run them for 2 hours. Don’t send them [to dialysis], they're not doing well today. So, I like the flexibility of it.Palliative care physician: I like that it allows for flexibility in terms of the timing and how dialysis is performed that I'd like to normalize a bit—the idea that you don't need to do dialysis on a strict Monday, Wednesday, Friday schedule every single week.Dialysis may control symptomsDialysis clinic nurse manager: But if they're too tired to come 3 times a week, maybe they just need to come for comfort, maybe to get the swelling down, or the fluid off their lungs for breathing.Caregiver: I wanted her to have that dialysis as long as she could have it. I just felt if she did not have it, I felt she would be suffering. She would swell up, fluid will build up.Patients spend more time on hospiceCaregiver: It’s sort of an ideal interim step that you can explore different options without suddenly putting the person in jeopardy by suddenly taking them off of dialysis.Hospice physician: We do it in a setting where we recognize it can take some time. Hospice folks are familiar with the process of allowing end of life to sink in. And being able to continue dialysis for 3, 4, or 6 sessions helps the nurses, the social worker, and the chaplain all interact with the family as they watch the patient's tolerance of dialysis diminish, come to grips with it. Better than the scenario where you say, “Well, I'm not doing it anymore,” and deal with that. We can permit the window to be open longer and wider.Theme 3: The program facilitates goal-concordant care near the end of life.Fulfilled end-of-life goalsCaregiver: It’s his wishes that he go home to be with his family and not die in the hospital […] We’re going to help him achieve that goal. That’s what going on palliative care allowed him to do, to have that much control over something he had no control over, for the most part.Dialysis clinic nurse management: The family was so much at peace, just being at his bedside, knowing that he wasn't gasping for every breath.Patients have control at end of lifeCaregiver: It was kind of like he had a choice, too. And he knew when he wanted to stop. He knew.Dialysis clinic social worker: I think the outcome with these families, they feel like [their] loved one was able to still have control over their decision. The hospice and concurrent program allowed his body to make the decision for himself.Families experience quality time togetherCaregiver: My sons were here, and they were able to enjoy [the patient’s] company [...] So, it just meant he had a good quality of life while he was on hospice.Dialysis clinic social worker: Ideally, it would be giving them that opportunity, and then to be able to be at home with their family members, and just be able to be comfortable at home.Caregiver: [Patient] was a pastor. And so am I. And so is our daughter. It gave him time to make that final journey. As alert as he could be for as long as he could be.Those involved report positive outcomesDialysis clinic social worker: Prior to the program there wasn’t really anything to offer in terms of hospice or a continuation of dialysis and hospice at the same time. So, just having something to be able to offer a family has been empowering.Referring physician: I think the ones that have gone through this kind of program have done a lot better.Caregiver: I just thought it was really the best of all worlds.Theme 4: Care coordination and education are integral to delivering high-quality concurrent care.Good communication fosters collaborationCaregiver: I had one of the [dialysis nurses] call me once a week to see how he was doing. They always checked in on him to see how things were going with him. They treated me like family.Hospice nurse: [The dialysis team members] were very receptive to what I had to say and report, and because they were so familiar with the patient from treating her for a long period of time, they actually were a really good source of information for me in regard to her history and just even her personality, things like how to approach or how to treat her.Referral pathways must be clearDialysis clinic social worker: Working collaboratively as a team has been really helpful, and having hospice come in and educate some of our staff and nurses has made the process a lot smoother.Nephrology physician: If you get a list of patients that kind of screen in, maybe every 3 months a phone call with the nephrologist could be like, “How’s Mrs. Y doing? How is Mr. X doing? Do you think that things have gone well?” And then, if I say this patient might actually benefit from a more intense supportive conversation, then maybe figuring out whether or not their goals are still the same as they were.Education facilitates the programHospice nurse manager: We're in hospice. I don't know dialysis all too well. I have a general understanding as a nurse that they're pulling fluid off, what does that looks like? I know they're de-prescribing. But I think any education that we could get from the clinics regarding what that care looks like, and how dramatically different it is from a normal dialysis session, would be helpful.Caregiver: They did talk to me about, when we went on the program, that there would be a difference in the purpose of the dialysis.Coordinated care leads to smooth transitionsCaregiver: I knew the protocol. It was very smooth. They brought a bed in. They brought the equipment, the oxygen. The nurses were wonderful. The aides were wonderful.Lack of coordinated care leads to rough transitionsCaregiver: I thought that we were going to be taken care of. And that my dad is gonna be taken care of. And instead it was many, many phone calls. And pulling teeth to get the bed, to get the medicine and to get an oxygen tank that was working, to get the doctor to come over. It was like, there wasn't any sense that hospice care was helping us. We had to manage every single step of the hospice care.Referring physician: I think that the challenging thing is when you get different people seeing the patient, managing patients. We may even have the same ideas, but the way we go about it is very different. Theme 1: Dialysis complicates the end-of-life experience. Hospital utilization intensifies Caregiver: Those last couple weeks […] were absolutely grueling. He was in and out of the hospital. Dialysis clinic social worker: These patients go into the hospital, and they're clearly at the end of life, and they're continuing to have treatments and other invasive procedures. Patients decline clinically on dialysis Nurse practitioner: These people seem to be just very chronically ill, and it seems like they do a lot of suffering up to the point where they decide this [dialysis] isn’t working. Hospice physician: This patient just went through dialysis and now they’re agitated and uncomfortable and moaning. Complexities cause late hospice referral Dialysis clinic social worker: They'll have frequent hospitalizations. They're in and out, or back in the clinic. They end up, usually, in my experience, being admitted to the ICU and then dying within the hospital. And hospice has been too late at that point. Palliative care physician: Life expectancy is really short for some of these patients when you stop dialysis. And so, you might have a very small window to work with […] so they really miss out on the benefits of that kind of support. Dialysis impedes transitions near the end of life Caregiver: He was still convinced, and we finally could not go to dialysis any longer. I mean, he was flailing. “I have to go, I have to go [to dialysis].” And I was like, “[Patient], I can't even get you in the car.” Hospice manager: The weight of stopping dialysis is so heavy that it takes so much time and planning and conversation to get a family and a patient to that point to see the benefit of it or just to say, “Yes, I'm ready to stop doing that and putting my body through that.” Theme 2: The program provides a bridge to hospice. Continuing dialysis eases patient and caregiver distress and provides psychological support Caregiver: What it means is, she's not shut off. The door is open and she can go through that door and receive dialysis, 10 treatments. She could have never gotten to 10 treatments, but she knew she could [have them]. Palliative care physician: Just knowing that it's an option sometimes really alleviates a lot of the fear and the sense of abandonment that can come with these really tough decisions. Dialysis becomes goal-focused Caregiver: He didn’t have to do it for the 3 hours. All he had to do was stay as long as his body and his brain could handle it. And those aspects were extremely important to both of us. Hospice nurse: I think it pulls into focus how patients want to live. Yes, I want to still be able to get dialysis and it’s ingrained in me, but this is what I do to take care of—and try and keep on doing until […] I can't do it anymore. Program allows flexibility Dialysis clinic nurse manager: We all assess the patient. And then we adjust it for the patient. You don't run them for 3 hours, run them for 2 hours. Don’t send them [to dialysis], they're not doing well today. So, I like the flexibility of it. Palliative care physician: I like that it allows for flexibility in terms of the timing and how dialysis is performed that I'd like to normalize a bit—the idea that you don't need to do dialysis on a strict Monday, Wednesday, Friday schedule every single week. Dialysis may control symptoms Dialysis clinic nurse manager: But if they're too tired to come 3 times a week, maybe they just need to come for comfort, maybe to get the swelling down, or the fluid off their lungs for breathing. Caregiver: I wanted her to have that dialysis as long as she could have it. I just felt if she did not have it, I felt she would be suffering. She would swell up, fluid will build up. Patients spend more time on hospice Caregiver: It’s sort of an ideal interim step that you can explore different options without suddenly putting the person in jeopardy by suddenly taking them off of dialysis. Hospice physician: We do it in a setting where we recognize it can take some time. Hospice folks are familiar with the process of allowing end of life to sink in. And being able to continue dialysis for 3, 4, or 6 sessions helps the nurses, the social worker, and the chaplain all interact with the family as they watch the patient's tolerance of dialysis diminish, come to grips with it. Better than the scenario where you say, “Well, I'm not doing it anymore,” and deal with that. We can permit the window to be open longer and wider. Theme 3: The program facilitates goal-concordant care near the end of life. Fulfilled end-of-life goals Caregiver: It’s his wishes that he go home to be with his family and not die in the hospital […] We’re going to help him achieve that goal. That’s what going on palliative care allowed him to do, to have that much control over something he had no control over, for the most part. Dialysis clinic nurse management: The family was so much at peace, just being at his bedside, knowing that he wasn't gasping for every breath. Patients have control at end of life Caregiver: It was kind of like he had a choice, too. And he knew when he wanted to stop. He knew. Dialysis clinic social worker: I think the outcome with these families, they feel like [their] loved one was able to still have control over their decision. The hospice and concurrent program allowed his body to make the decision for himself. Families experience quality time together Caregiver: My sons were here, and they were able to enjoy [the patient’s] company [...] So, it just meant he had a good quality of life while he was on hospice. Dialysis clinic social worker: Ideally, it would be giving them that opportunity, and then to be able to be at home with their family members, and just be able to be comfortable at home. Caregiver: [Patient] was a pastor. And so am I. And so is our daughter. It gave him time to make that final journey. As alert as he could be for as long as he could be. Those involved report positive outcomes Dialysis clinic social worker: Prior to the program there wasn’t really anything to offer in terms of hospice or a continuation of dialysis and hospice at the same time. So, just having something to be able to offer a family has been empowering. Referring physician: I think the ones that have gone through this kind of program have done a lot better. Caregiver: I just thought it was really the best of all worlds. Theme 4: Care coordination and education are integral to delivering high-quality concurrent care. Good communication fosters collaboration Caregiver: I had one of the [dialysis nurses] call me once a week to see how he was doing. They always checked in on him to see how things were going with him. They treated me like family. Hospice nurse: [The dialysis team members] were very receptive to what I had to say and report, and because they were so familiar with the patient from treating her for a long period of time, they actually were a really good source of information for me in regard to her history and just even her personality, things like how to approach or how to treat her. Referral pathways must be clear Dialysis clinic social worker: Working collaboratively as a team has been really helpful, and having hospice come in and educate some of our staff and nurses has made the process a lot smoother. Nephrology physician: If you get a list of patients that kind of screen in, maybe every 3 months a phone call with the nephrologist could be like, “How’s Mrs. Y doing? How is Mr. X doing? Do you think that things have gone well?” And then, if I say this patient might actually benefit from a more intense supportive conversation, then maybe figuring out whether or not their goals are still the same as they were. Education facilitates the program Hospice nurse manager: We're in hospice. I don't know dialysis all too well. I have a general understanding as a nurse that they're pulling fluid off, what does that looks like? I know they're de-prescribing. But I think any education that we could get from the clinics regarding what that care looks like, and how dramatically different it is from a normal dialysis session, would be helpful. Caregiver: They did talk to me about, when we went on the program, that there would be a difference in the purpose of the dialysis. Coordinated care leads to smooth transitions Caregiver: I knew the protocol. It was very smooth. They brought a bed in. They brought the equipment, the oxygen. The nurses were wonderful. The aides were wonderful. Lack of coordinated care leads to rough transitions Caregiver: I thought that we were going to be taken care of. And that my dad is gonna be taken care of. And instead it was many, many phone calls. And pulling teeth to get the bed, to get the medicine and to get an oxygen tank that was working, to get the doctor to come over. It was like, there wasn't any sense that hospice care was helping us. We had to manage every single step of the hospice care. Referring physician: I think that the challenging thing is when you get different people seeing the patient, managing patients. We may even have the same ideas, but the way we go about it is very different. Theme 1 was that without the program, dialysis complicates the end-of-life experience. At baseline (without the program), both clinicians and caregivers described end-of-life experiences characterized by intensified utilization and continued dialysis, even when there is little evidence of meaningful benefit. The alternative hospice pathway proves hard to access, often owing to barriers in the Medicare payment policy. Dialysis also impedes transitions near the end of life from a psychological perspective; participants describe patients might feel they are “giving up” by stopping dialysis. Theme 2 was that the program provides a bridge to hospice. By retaining the ability to receive dialysis, participants described how the program serves as a bridge to alleviate the decision-making complexity and allows more timely access to hospice. Participants describe the option to continue dialysis eases patient and caregiver distress and provides psychological support. Participants discussed how dialysis on the program is tailored to the patients’ goals, allowing for flexibility of treatments and a focus on patient goals; some noted that dialysis may control symptoms. Participants described how the program provided more time on hospice, allowing them to receive its full benefits, including anticipatory grief support. Theme 3 was that the program facilitates goal-concordant care near the end of life. Caregivers and clinicians both emphasized how the program promotes goal-concordant care and, relatedly, allows patients to have control. The program allows families to spend quality time together in the last days of life. Overall, interviewees described the positive impact of having a program to offer that provides better end-of-life care. Theme 4 was that care coordination and education are integral to delivering high-quality concurrent care. Good communication between the hospice and dialysis teams fosters collaboration, even before a patient enrolls in the program. Clinician participants emphasized that the process to identify appropriate patients must be clear, and education about the program facilitates care for patients, caregivers, and clinicians. Participants described care coordination as essential for smooth transitions, and, conversely, lack of coordinated care led to rough transitions. Interviews identified the current state of fragmented end-of-life care, and how concurrent care may facilitate high-quality experiences for patients, families, and clinicians. In a survey of clinical teams caring for people on dialysis, fewer than 5% felt they had the comfort or skills to address the communication needs of patients near the end of life.6Culp S. Lupu D. Arenella C. Armistead N. Moss A.H. Unmet supportive care needs in U.S. dialysis centers and lack of knowledge of available resources to address them.J Pain Symptom Manage. 2016; 51: 756-761.e2https://doi.org/10.1016/J.JPAINSYMMAN.2015.11.017Abstract Full Text Full Text PDF PubMed Scopus (0) Google Scholar Interdisciplinary education and care delivery infrastructure is essential to a high-quality patient and caregiver experience. Caregivers described that the option to continue dialysis while receiving hospice allowed patients to achieve their goals (including spending time with family and dying at home) and gave them more control over their end-of-life experience. This is consistent with previously described patient and caregiver priorities that include dialysis-free time and low impact on families.7Urquhart-Secord R. Craig J.C. Hemmelgarn B. et al.Patient and caregiver priorities for outcomes in hemodialysis: an international nominal group technique study.Am J Kidney Dis. 2016; 68: 444-454https://doi.org/10.1053/J.AJKD.2016.02.037Abstract Full Text Full Text PDF PubMed Google Scholar For people living on dialysis—sometimes for decades—our findings indicate that allowing patients to continue dialysis may act as a bridge, providing a flexible transition to hospice. Participants identified opportunities to improve the program, including written policies to clarify workflow and roles. Participants also suggested conversations about concurrent care should begin well before a patient is near end of life. Data suggest many patients initiate dialysis without prior discussions of prognosis, which may impact end-of-life decision making.8Wachterman M.W. Marcantonio E.R. Davis R.B. et al.Relationship between the prognostic expectations of seriously ill patients undergoing hemodialysis and their nephrologists.JAMA Intern Med. 2013; 173: 1206-1214https://doi.org/10.1001/JAMAINTERNMED.2013.6036Crossref PubMed Scopus (0) Google Scholar Successful implementation of concurrent care must include education and training for team members to provide upstream goals of care conversations. Participants identified several opportunities to improve the program (Table S1). The program was implemented and evaluated at a single center, limiting generalizability. Owing to patients’ short prognoses, we could not obtain patient-reported feedback. Our findings suggest that concurrent services support goal-concordant care by eliminating an either-hospice-or-dialysis decision for patients and families. Research idea and study design: NCE, JOS; data acquisition: NCE, EMM, MTR, JOS; data analysis/interpretation: NCE, EMM, MTR, JOS; supervision or mentorship: NCE, KL, RT, JOS. Each author contributed important intellectual content during manuscript drafting or revision and agrees to be personally accountable for the individual’s own contributions and to ensure that questions pertaining to the accuracy or integrity of any portion of the work, even one in which the author was not directly involved, are appropriately investigated and resolved, including with documentation in the literature if appropriate. This work was supported by NIH NINR 5U2CNR014637-08 via the Palliative Care Research Cooperative (PCRC). Neither the funders nor the authors’ institutions had any role in study design; collection, analysis, and interpretation of data; writing the report; and the decision to submit the report for publication. Dr Schell receives salary support as a Palliative Care Advisor for Dialysis Clinic, Inc. Dr Lagnese had the following role: CMO, UPMC Family Hospice during study period. Dr Taylor has the following role: Senior Medical Director, Reach Kidney Care. The remaining authors declare that they have no relevant financial interests. Received August 6, 2022. Evaluated by 2 external peer reviewers, with direct editorial input from a Statistics/Methods Editor, an Associate Editor, and the Editor-in-Chief. Accepted in revised form January 17, 2023. Download .pdf (.24 MB) Help with pdf files Supplementary File (PDF)Items S1-S3; Table S1.