Experience of Older Adults and Their Family Members in the Kidney Transplant Evaluation

This qualitative study describes the experiences of the kidney transplant evaluation process among older adults with advanced kidney disease and their family members.

Key Points

Question

What are the experiences and perspectives of older adults with advanced kidney disease and their family members regarding the kidney transplant evaluation process?

Findings

In this qualitative study of 26 adults aged 65 years or older with advanced kidney disease and 7 of their family members, many participants viewed kidney transplant as a highly desirable treatment option, but having to take personal responsibility for navigating a lengthy, demanding, and opaque evaluation process could take a heavy emotional and psychosocial toll.

Meaning

The findings suggest that more work is needed to make the kidney transplant evaluation process more transparent and person centered and to help older adults and their family members understand what to expect as they contemplate and engage in this process.

Abstract

Importance

Transplant can be a valuable treatment option for older adults with kidney failure, and recent initiatives encourage more frequent referral to transplant centers. However, the evaluation process can be challenging, and most older adults do not ultimately receive a kidney.

Objective

To elucidate the perspectives and experiences of older adults with advanced kidney disease and their family members regarding the kidney transplant evaluation process.

Design, Setting, and Participants

This qualitative study, conducted between December 19, 2022, and February 5, 2024, included adults aged 65 years or older with advanced kidney disease (estimated glomerular filtration rate ≤20 mL/min/1.73 m², receiving dialysis, or with a functioning kidney transplant) and their family members in Seattle, Washington.

Main Outcomes and Measures

Perspectives and experiences of patients and family members, identified through inductive thematic analysis of semi-structured interviews.

Results

A total of 26 older adults (16 [61.5%] men; median age, 68 years [range, 65-74 years]) with advanced kidney disease and 7 of their family members (4 [57.1%] women; median age, 65 years [range, 36-75 years]) were interviewed. Three dominant themes pertaining to the kidney transplant evaluation process were identified: (1) committed to transplant, (2) a complex and protracted process, and (3) responsibility without power. Because receiving a kidney was such an important priority, most participants were willing to engage in what could be a demanding process of testing and treatment narrowly focused on this future goal. However, the transplant evaluation could be lengthy, demanding, opaque, and fragmented, and patients often put other aspects of their lives on hold while awaiting an uncertain result. Patients and families often felt personally responsible for navigating and completing the transplant evaluation despite having little power to shape this process. Feeling responsible for the continued progress of a high-stakes evaluation process while remaining dependent on clinical teams and family members for support could strain relationships.

Conclusions and Relevance

This qualitative study found that older adults with advanced kidney disease and their family members were highly motivated to receive a kidney transplant but engagement in an evaluation process, over which they had little control, could have far-reaching implications for patients and families. These findings underline the importance of making the transplant evaluation process more transparent and person centered and of helping patients and families who are contemplating or engaged in the process to understand what to expect.

Introduction

Adults aged 65 years or older account for 43% of all people in the US treated for kidney failure.¹ For these older adults, kidney transplant can be a valuable treatment option that promises a longer life and better quality of life compared with continuing dialysis.^2,3,4 However, to receive a kidney, patients must successfully complete a formal evaluation and selection process at a transplant center⁵ that can be complex and burdensome.^6,7,8 Compared with younger adults, older adults tend to have more limited life expectancy and a greater number and severity of comorbid conditions that often require a more extensive evaluation. Consequently, most older adults evaluated for transplant will not ultimately receive a kidney.^9,10

To promote broader and more equitable access to kidney transplant, many members of the transplant community have called for more proactive and inclusive approaches to transplant referral.¹¹ While this approach may afford more older adults with kidney failure an opportunity to be considered for transplant, it may also have the unintended consequence of drawing a greater number of older adults into a lengthy and demanding process without their receiving a kidney. In this context, it is especially important to understand what the kidney transplant evaluation is like for older adults and whether there are opportunities to better support those contemplating or engaged in this process.

Methods

We conducted a qualitative study to elucidate the perspectives and experiences of older adults with advanced kidney disease and their family members regarding the transplant evaluation process. The University of Washington institutional review board approved this study and authorized verbal informed consent. Participants were offered a $30 gift card in appreciation of their time. This study followed the Consolidated Criteria for Reporting Qualitative Research (COREQ) reporting guideline.

Participant Recruitment and Data Collection

Potential participants were identified through the following sources: (1) a list of patients seen at a University of Washington–affiliated general nephrology or transplant clinic generated by the University of Washington Institute of Translational Health Sciences Leaf tool¹² and (2) a list of current patients receiving care at a regional nonprofit dialysis organization (Northwest Kidney Centers). Patients receiving care at Northwest Kidney Centers are typically referred to 1 or more of 3 regional transplant centers in Seattle. Patients’ electronic health records were reviewed to identify whether they met eligibility criteria, which included age 65 years or older at the time of recruitment, English speaking, and advanced kidney disease (those with an estimated glomerular filtration rate ≤20 mL/min/1.73 m², receiving dialysis, or with a functioning kidney transplant). Participants were purposively sampled to include a range of different types of exposure to the kidney transplant evaluation process based on medical record review and to represent a diversity of gender and racial and ethnic backgrounds. Gender was ascertained by self-report, and options included man, woman, nonbinary, prefer to self-describe, and prefer not to say. Race and ethnicity were ascertained by self-report. Race categories included American Indian or Alaska Native, Asian, Black or African American, Native Hawaiian or Other Pacific Islander, White, more than 1 race, prefer not to self-describe, and prefer not to say. Ethnicity categories were Hispanic or Latino, not Hispanic or Latino, and prefer not to say.

Patients who agreed to participate in the study were asked to provide contact information for any family members or other close persons familiar with their care who might be interested in participating in the study. These individuals were then contacted by phone and invited to participate.

Before beginning the interview, participants completed a questionnaire to capture their demographic characteristics and relationship to the transplant process. A semi-structured interview guide was developed by C.R.B. and A.M.O. (both health services researchers and practicing nephrologists) to elicit participants’ experiences pertaining to the kidney transplant evaluation process (eMethods in Supplement 1). Study participants completed a 30- to 60-minute video, phone, or in-person interview with C.R.B. or O.A.G. (a study coordinator and medical anthropologist). The interview guide was iteratively refined during the course of the study to allow for elaboration of emerging themes. Interviews were audio-recorded with participants’ permission and transcribed verbatim. Interviews were conducted between December 19, 2022, and February 5, 2024.

Qualitative Analysis

Two investigators (C.R.B. and O.A.G.) independently openly coded (ie, labeled conceptual constructs) written interview transcripts. Using the constant comparative method,^13,14 these investigators then collapsed codes into groups with related meanings, identified relationships between code groups, and developed broader thematic categories.^15,16 We continued interviewing and analysis until confirming thematic saturation (the point at which multiple dimensions of themes were richly elaborated and stable when tested against new transcripts).^14,15,17 All investigators (including J.S.T., a medical anthropologist, and P.O.G., a patient advocate) reviewed selected exemplar quotations and contributed to iterative refinement of thematic descriptions and categories. Atlas.ti, version 8 (Scientific Software Development GmbH) was used to organize and store text and codes.

Results

A total of 26 adults aged 65 years or older with advanced kidney disease and 7 of their family members participated in the study (Table 1). The median age of patient participants was 68 years (range, 65-74 years); 16 (61.5%) were men, 10 (38.5%) were women, and none indicated that they were nonbinary, preferred not to describe, or preferred not to say. None were American Indian or Alaska Native; 2 (7.7%), Asian; 8 (30.8%), Black or African American; none, Native Hawaiian or Other Pacific Islander; 13 (50.0%), White; and none, more than 1 race. Also, 2 (7.7%) preferred not to describe their race, and 1 (3.8%) preferred not to say. Overall, 3 (11.5%) were Hispanic or Latino, and 23 (88.5%) were not Hispanic or Latino. Most (21 [80.8%) reported having completed some tests or treatments as part of the transplant evaluation; 19 (73.1%), having been referred to a transplant center; 13 (50.0%), having been wait-listed; and 5 (19.2%), having received a kidney transplant. Most family members were spouses and children of patient participants. Their median age was 65 years (range, 36-75 years); 3 (42.9%) were men, 4 (57.1%) were women, and none indicate that they were nonbinary, preferred not to self-describe, or preferred not to say.

Table 1. Participant Characteristics^a.

Characteristic	Patients (n = 26)	Family members (n = 7)
Age, median (range), y	68 (65-74)	65 (36-75)b
Race
American Indian or Alaska Native	0	0
Asian	2 (7.7)	0
Black or African American	8 (30.8)	1 (14.3)
Native Hawaiian or Other Pacific Islander	0	0
White	13 (50.0)	5 (71.4)
More than 1 race	0	1 (14.3)
Prefer to self-describec	2 (7.7)	0
Prefer not to say	1 (3.8)	0
Ethnicity
Hispanic or Latino	3 (11.5)	0
Not Hispanic or Latino	23 (88.5)	6 (85.7)
Prefer not to say	0	0
Gender
Man	16 (61.5)	3 (42.9)
Woman	10 (38.5)	4 (57.1)
Nonbinary, prefer to self-describe, or prefer not to say	0	0
Residence
Urban	11 (42.3)	1 (14.3)
Suburban	11 (42.3)	4 (57.1)
Rural	4 (15.4)	2 (28.6)
Family member’s relationship to patient
Spouse or long-term partner	NA	3 (37.5)
Child	NA	2 (28.6)
Other (sibling or cousin)	NA	2 (28.6)
Patient’s duration of dialysis, y
0	9 (34.6)	4 (57.1)
<1	1 (3.8)	0
1 to <2	2 (7.7)	0
2 to <5	10 (38.5)	1 (14.3)
5-10	3 (11.5)	2 (28.6)
>10	1 (3.8)	0
Experience with the transplant evaluation process, No. (%) responding yes
Have you been involved in helping your [family member] in any way in making decisions about transplant or doing the transplant evaluation?	NA	6 (85.7)
Have you [Has your family member] discussed kidney transplant with any of your medical providers?	24 (92.3)	6 (85.7)
Have you [Has your family member] done any tests or treatments to see if you could get a kidney transplant or as part of the transplant evaluation?	21 (80.8)	6 (85.7)
Have you [Has your family member] been referred to a kidney transplant center?	19 (73.1)	5 (71.4)
Have you [Has your family member] ever been on the national kidney transplant waiting list?	13 (50.0)	4 (57.1)
Have you [Has your family member] ever had a kidney transplant?	5 (19.2)	1 (14.3)

Abbreviation: NA, not applicable.

^a Data are presented as number (percentage) of individuals unless otherwise indicated.

^b Five family member participants reported their age.

^c Those who preferred to self-describe their race reported identifying as Hispanic and Native American and White.

Three themes emerged from qualitative analysis, each with several subthemes: (1) committed to transplant, (2) a complex and protracted process, and (3) responsibility without power (Figure). Exemplar quotations for each theme are included in Table 2, Table 3, and Table 4, respectively.

Figure. Themes and Subthemes Representing the Perspectives and Experiences of Older Adults and Their Family Members About the Kidney Transplant Evaluation Process.

Table 2. Committed to Transplant.

Participant identification	Farthest step reached in the transplant process	Example quotation
Prioritizing transplant
Patient 12	Discussed transplant, unsure of whether they had done any testing related to transplant evaluation	“I’m also a realist. 14 y when you’re 30 is very different than 14 y when you’re [my age]. I don’t want to make plans into my 90s, that’s just unreasonable....What am I achieving with the transplant that I’m not going to get with the dialysis?”
Patient 20	Referred to a transplant center	“It gives you hope. Maybe a chance to continue a life that you had. You know, some sort of normalcy….The time I spend here [on dialysis]...the transplant would give you back all of the time I spend at dialysis.”
Patient 25	Wait-listed	“Always my choices in treatment were to preserve the ability to have a transplant. Everything in the last 5 y was geared toward maintaining the ability to have a transplant…[for example,] a prostate surgery....I inferred that [was] the only way to remain eligible.”
Patient 12	Discussed transplant, unsure of whether they had done any testing related to transplant evaluation	“[After having a hysterectomy] I went and had the pap smear [as part of the transplant evaluation]. And they were bound and determined to find a cervix, and I kept telling them I don’t have one. But they were going to find it. It was the most painful thing. I mean, I was on the table crying.”
Family member 1	Parent has done tests	“They said the protocol is you have to take your cholesterol medications, even if you are not needing it.…Her cholesterol, total cholesterol, has been pretty much on the lower end, but she’s still taking cholesterol medications....We don’t want to be noncompliant.”
Patient 5	Received a transplant	“Getting used to being poked and prodded....[Why be] worried about minor discomforts when you’re having a procedure [transplant] that’s going to save your life?”
Focus on screening and disease prevention
Patient 21	Referred to a transplant center	“It’s nothing until it’s something….She’s got a low white blood cell count. It’s always been that way....Well, now of course they want to do a little deeper dive into that….Where normally you probably wouldn’t do that....You’re having tests done that at any time, something could show up.”
Patient 25	Wait-listed	“[I had] the prostate removed....So, you know, it happens to most older guys...and probably, if I hadn’t been looking for a transplant, maybe I wouldn’t even have had it treated…[but] they don’t want a sniff of possible cancer. And yeah, it might not have been cancer, but you’ve gotta take care of it, otherwise they won’t give you a transplant.”
Patient 23	Wait-listed	“One tooth, they need it to be extracted...I say ‘Why, I don’t have any pain or anything.’ But it’s better to do an extraction because you need to avoid infection, because when you have a new transplant, your immune is not strong, and you need a strong body to fight against infection.”
Patient 2	Wait-listed	“The thing that was a surprise was after the stress test...there was substantial blockage in 3 of my arteries going to my heart. Three of them! And I didn’t have any symptoms, I didn’t have shortness of breath, or weakness. It surprised me because I felt I had a pretty strong heart. But I’m glad they found what they did because it was a major thing.”
Trust in the process
Patient 21	Referred to a transplant center	“When you have a limited resource…there has to be a selection process....It just makes me curious about who’s behind the curtain. I’m sure that they keep it anonymous, and I’m sure they’re just looking at test results....That would be a hard job, sitting around thinking, trying to select who’s worthy and who’s not worthy.”
Patient 21	Referred to a transplant center	“I hate to be that blunt about it, but there’s plenty of people out there with kidney failure in their 30s that still have plenty of years ahead of them....It’s not published, or at least it’s not talked about. But somebody has got to be making those decisions. If you have one patient that was 65, and you had one patient that was in their 30s, I would think that would be an easy decision to make.”
Patient 24	Referred to a transplant center	“You do everything that your doctor has asked you to do in terms of eating, eating the right foods, making sure you’re doing the exercise he’s asked you to do, and taking the medicine....As long as you’re doing all of those things to help that happen, you should be able to get a kidney.”
Patient 11	Wait-listed	“I’m Japanese, what does it feel like to be Caucasian? I don’t know, I wasn’t born that way. I got points taken away….What am I supposed to do about it? Go to Clairol and get a skin color transplant or whatever? It is what it is.”
Patient 14	Wait-listed	“It’s all about their statistics....That’s why they make sure you’ve got to be perfect in all of these different categories because they don’t want to take a chance….They won’t tell you that, but you know it’s true and I know it’s true.”

Table 3. A Complex and Protracted Process.

Participant identification	Farthest step reached in the transplant process	Example quotation
Opaque and fragmented
Patient 20	Referred to a transplant center	“[The doctor] walk[ed] us through [the posttransplant course]...how long for recovery, what to expect. And the drugs I’ll have to take….Just kind of walked me through the whole thing, the whole process. I’m really thankful for that, to know what to expect.”
Family member 1	Parent has done some testing related to transplant evaluation	“So we followed all of the directions on paper, but....If we had an explanation of how the transplant process goes....The journey to the transplant....When you’re going through a new scenario, it’s so unpredictable. But [it is helpful] when you know this is what you might go through, this is probably what you might feel, this is how many more appointments you have to go.”
Patient 20	Referred to a transplant center	“I don’t want them to blow sunshine every day, but tell me exactly what’s going on. Tell me where we are in the process and what we have to do....I know that’s a lot to ask, but I think it would make all the difference...[to] put [us] at ease that the process is moving along.”
Patient 21	Referred to a transplant center	“When you see a doctor, it’s 10 min. So it’s not like you’re going to go into a deep dive about the whole process….I’ve been out looking at the information online….You’ve just got to know how to dig through the information.”
Patient 16	Received a transplant	“I’d never been through anything so intense, so specific and so many things. It’s like this long check-off list, but they don’t give it to you all at once….They were more clear than any other place I’ve been to for any other thing....It seemed so organized and clear on what we had to do.”
Patient 7	Wait-listed	“[The transplant team] said, ‘You’ve got to be on your BMI’....I have gained 30 pounds since the end of May…[but] my local nephrologist] said, ‘Well, don’t worry about that, the main thing is we want you to be eating protein’....There’s just not that person [in the transplant center] to call and say, ‘hey, what about this or that?’”
Patient 20	Referred to a transplant center	“I called [the transplant center] just a couple of months ago and said, ‘What’s going on?’....They haven’t gotten back to me with results or anything. I don’t call them, I look on the charts, and try to navigate my way through that way…but it’s frustrating.”
Patient 19	Wait-listed	“I went to the blood draw place an hour before my [transplant] doctor’s appointment there, and didn’t get called. It was that busy. So then I came and I checked in….She goes ‘No, you have to go back to the lab’….I go back to the lab to try and get drawn and sit there for another hour until the person, another person that I was meeting calls up and says, ‘Are you coming to your meeting?’….I spent 3 h that day trying to get my blood drawn.”
Seemingly unending
Family member 4	Sibling was wait-listed	“He waits, he waits. He’d be waiting on dialysis and then, ‘Oh, well...we’ve discovered that you have prostate cancer.’ And that has to be treated so you have to go off the list. And so he complied with the surgery and he ended up with radiation, then ‘Oh, because of the bleeding, we can’t keep you on the list, that has to be treated first.’ So then he’s had hyperbaric. And then he had problems with his heart.”
Patient 25	Wait-listed	“They would come back and say it’s been too long since I’ve had pulse-doppler of my veins, I needed another one, and that would have to be scheduled. It’s been too long since you’ve had CT….You had to do one and then another and then another, and then a problem would come up…and all the while time is going on….That process was soul crushing.”
Patient 7	Wait-listed	“I’ve been through [the annual evaluation] so many times now....Getting older and having diabetes, I’ve got calcification, and they’re just looking at, ‘Is she still a good candidate?’....One of the visits, one of the teams said they thought I was ending my chances, my chances are narrowing down.”
Family member 4	Sibling was wait-listed	“Maybe we would’ve pushed a little harder if we had known that that clock was ticking….It’s hard to know what questions to ask when you’re in that situation and you’re just told, ‘Okay, we’ve got to wait a little more,’ so you just take it day to day and wait a little more, and then oh, something else happens….And that time just sort of passes.”
Patient 25	Wait-listed	“[The transplant surgeon] understood how upset I was about learning that the transplant was not being considered for me. In fact he was the one who advised me to...[get] a second opinion....He thought it would be important for my own peace of mind.”
Life on hold
Patient 7	Wait-listed	“I know that it can take a long time, but…it could change your life....You’re sitting there waiting, just go on with your life, but you’ve always got that in the back of your head….It was hard to plan ahead....It’s like, ok, so if the [transplant center], at my yearly thing [says] you’re not a candidate anymore, then we could make some options. But I don’t want to give up hope....The what ifs…your whole plan for retirement and everything....Your world is turned upside down.”
Patient 21	Referred to a transplant center	“It was just easier to have just this as my sole focus....I can only imagine people that go through this process with their career, that’s got to be stressful. It has not been stressful for me, because this is really my whole focus at this point. That’s why I decided to retire a little bit early.”
Family member 3	Spouse was wait-listed	“Do we [travel] now even though she’s not all that healthy and might struggle to do it? Or is it something that you can do after you’ve had a transplant?....I know the reality of today, I don’t know what it’s like if she were to have a new kidney….That’s where my mind is, it just kind of wonders about the future.”
Family member 4	Sibling was wait-listed	“He’s basically put, in his own words, put his life on hold, thinking that once he got the transplant, he’d feel better and want to do things....The decision hung on and hung on and hung on, and was delayed for so long....I think that the fact that he was finally told [that] the transplant board rejected transplant, actually, it gave him a little bit of relief...he decided okay, I’m going to go down and see [our son and daughter] and the kids for Christmas, and that was the first time he’d done something positive about that in 5 and a half years, and it’s like…you didn’t like the decision, but now it’s sort of like, okay, now I have to move on with my life.”
Patient 21	Referred to a transplant center	“It’s not like I’m spending an awful lot of time thinking about it....Having an autoimmune thing my whole life, maybe that has taken the edge off of worrying about it....Just because I’m used to not having answers and going through the process.”
Patient 5	Received a transplant	“This time around [evaluation for a second transplant], being a little bit older, I just appreciate life for what it is, and I’m just grateful to have these opportunities.”

Abbreviations: BMI, body mass index; CT, computed tomography.

Table 4. Responsibility Without Power.

Participant identification	Farthest step reached in the transplant process	Example quotation
Personal responsibility and demonstrating worthiness
Patient 20	Referred to a transplant center	“I haven’t heard anything from [the transplant center] about my status….So I called up my doctor…and he goes, ‘You have to be your own advocate. You’ve got to call them and pound your fist and say, “Hey listen, where do I stand? What do I have to do next?”’....You never have anybody take the reins and say, I’ll guide you through this, or give you a step-by-step procedure to go through. It’s just, the squeaky wheel gets the grease.”
Patient 2	Wait-listed	“[The transplant center said] ‘We’re going to have to pause you on our list because your [hemoglobin] A1C [measure of diabetes] is above 7’....I didn’t realize that the [hemoglobin] A1C level was a problem….It was never on my radar, and it was my own fault....It helps when the patient is paying attention....I do exactly what [the kidney doctor] tells me to do.”
Family member 1	Parent has done tests	“I did not know...that we can call the dialysis center to request a reschedule. But when I talked to the lady...she got upset with me and said, ‘You guys are not serious. So there’s no point to do anything about it because I’m going to cancel this appointment.’ So that’s where the frustration came and I was so powerless....[It was] like a teacher saying to a student, ‘Well, sorry, you can’t take the test because you were late to class.’”
Patient 25	Wait-listed	“I have to [go to dialysis], otherwise I’ll be declared noncompliant, and that will put me off transplant....Noncompliant is a buzzword for ‘He’s not going to take his transplant meds after transplant’....Of course, I’d been compliant for the last 27 y with my liver transplant, otherwise I would’ve rejected it a long time ago.”
Patient 15	Discussed transplant	“One of [the doctors] came in and said, ‘You know if you’d been healthier when you were younger, if you’d done this, you wouldn’t have had these problems,’ like with my heart. I go, ‘Ok, why don’t you try taking care of kids since 16. And paying bills, and doing everything. And then tell me what I should’ve done.’ When you don’t have a lot of money, you don’t eat as healthy.”
Family member 5	Spouse was referred to a transplant center	[Speaking about experience in a living donor evaluation] “Apparently, I shared too much and something I said was held against me. So I guess he thought that I had an issue with alcohol, and wanted me to have a chemical dependency evaluation....I’ve never had my character feel so attacked. I just felt like basically he was putting a label on me as an alcoholic....I don’t know who he saw, but he did not see me.”
Support and abandonment
Family member 3	Spouse was wait-listed	“I don’t know that we feel like we could be in any better hands. It’s like everybody we deal with is so friendly and helpful and informative....It’s nice to know that you have someone like that, that’s got your back….Like they honestly care about you as a person.”
Patient 11	Wait-listed	“[The nephrologist] was my personal advocate to put me on the list. So he kind of did the rah, rah, rah, put him on the list. So, I got on the list. And then because of my illness, I got off the list….It didn’t succeed, but just to have a doctor that was so personally involved with where you were at….Yeah baby, he’s on my side.”
Family member 1	Parent has done tests	“Some decisions sometimes feel like they’re personality based....[A clinician] who has the power to find information for you may decide to try and help you, and they may decide not to help you.”
Patient 24	Received a transplant	“I told them how important it was that I get [some paperwork] back as soon as possible. But I guess there was a mix up in the information, the form being faxed to them....What I was thinking [was]...am I not that important to make sure it got back on time?....This is important to me. This is a procedure that’s being done to help save my life.”
Family member 3	Spouse was wait-listed	“All the different tests and the days and things you had to do to prepare for some of them. But I can only imagine some elderly person who maybe lived by themselves might struggle with trying to get through something like that. Cause I know that it was a bit of a challenge for us to just keep it all straight.”
Patient 11	Wait-listed	“I believe I got points taken away because I don’t have a vast support network....But I’m going, these [friends] are really [in]vested in my health…but how do you describe that to a board?....On paper we’re just friends. But then in reality, every Thursday we go out to lunch together. We are family.”
Family member 5	Spouse was referred to a transplant center	“It’s really changed my life, because I’ve always been more of a workaholic....[now] I just want to do everything that I can to take care of my body…for donating to my husband….It’s been very good for us. We’ve been even more connected than ever. And we’ve been best friends for 20 y.”
Patient 19	Wait-listed	“My siblings, and our friends, I would say....I’m going to have to have a transplant. I felt like a leper. It’s like, they just vamoosed.”
Agency and powerlessness
Patient 24	Referred to a transplant center	“It really feels good to know that you’re accomplishing something and you’re getting toward your goal.”
Family member 4	Sibling was wait-listed	“It’s like, wait a minute, you’ve been compliant all this time. All this time! And now they’re saying no, you can’t have a transplant?....It just felt so terribly unfair….To see him be so incredibly compliant and then hear stories about other people who are not, who are getting transplants.”
Patient 24	Referred to a transplant center	“It’s just scary that somebody else has your life in their hands. For instance, if my cardiologist said, I’m not going to do it [sign off on the dental procedure] because I feel it’s too dangerous....It could mean they’re not going to put me on the [transplant] registry. So my only other factor would be to be on dialysis the rest of my life.”
Family member 3	Spouse was wait-listed	“You feel like you have a bit of a parachute, but you don’t know exactly if that parachute’s going to work when you pull the chord....You’re wondering exactly how the gears are working in the background to where you’re at and how your name’s going to get pulled….I don’t really understand the process.”
Patient 16	Received a transplant	“For a while there I felt, I don’t feel good enough to do this…because by the time you’re ready for a transplant, you’re not feeling too well anyway....My husband drove and so he knew exactly how to get to the hospital....But if I’d have been by myself, that would have been even more challenging....I would imagine for some people that would have been, might not have been possible.”
Patient 2	Wait-listed	“It just seemed like a rather abrupt ending to my relationship with [the medical center] for transplant….I was on my boat, and I get a call and it was real simple, ‘We’re taking you off of the program.’...Sometimes the medical issues are black and white...[but] I would think that would be a discussion the team would have with the patient….I was taken aback by how that was handled....I felt it was abrupt. I mean, this is my life.”

Committed to Transplant

Prioritizing Transplant

While several participants voiced concerns about the appropriateness of kidney transplant at older ages, most viewed transplant as an unalloyed good that they would not hesitate to pursue. Transplant promised an escape from the prospect or reality of life while receiving dialysis and a return to normalcy, described by 1 participant as “a chance to continue a life that you had.” Because transplant was seen as such a desirable goal, patients were typically willing to do whatever was asked of them even when they found aspects of the evaluation process to be excessive, performative, or uncomfortable. As 1 participant put it, “[why be] worried about minor discomforts when you’re having a procedure that’s going to save your life?”

Focus on Screening and Disease Prevention

The evaluation process tended to focus on minimizing health risks in a future peri- or posttransplant period, which might include intervening on conditions that were asymptomatic or not of immediate concern to the patient. Some participants welcomed this opportunity to take a more proactive approach to medical testing and identify undiagnosed health conditions that might cause problems in the future. Engaging in the evaluation process could also require a shift in mindset in which aberrant test results that would ordinarily have been viewed as benign or part of normal aging were now pathologized as current or potential disease states to be diagnosed, evaluated, and treated. One participant reflected on the decision to have a prostate resection: “It happens to most older guys…it might not have been cancer, but you’ve gotta take care of it, otherwise they won’t give you a transplant.”

Trust in the Process

Participants were sympathetic to the pressures on transplant center clinicians to make difficult decisions about allocating a scarce health care resource. While they lacked a detailed understanding of the candidate selection process that existed “behind the curtain,” they tended to trust that the process was fair and had faith that if “you do everything that your doctor has asked you to do,…you should be able to get a transplant.” Several participants did raise concerns about racism and bias, and 1 participant questioned whether such an extensive evaluation was really in patients’ best interests and suspected that this reflected excessive risk aversion on the part of transplant centers that “don’t want to take a chance.”

A Complex and Protracted Process

Opaque and Fragmented

While study participants had often received extensive education about kidney transplant surgery and life after transplant, some said they would have appreciated receiving more explicit information about the evaluation itself and where they were in the process. One participant described that to “be informed through the journey…[one needs to know] this is what you might go through…what you might feel…how many appointments you have to go.”

While for some participants, the transplant evaluation process felt smooth and well orchestrated, many found it to be confusing and fragmented. The large number of clinic visits, tests, and other components of the transplant evaluation were often poorly coordinated and could conflict with patients’ other health care needs. Sorting out conflicting instructions and priorities often fell to patients and families as transplant center staff were not always available when questions arose. One participant described having to review health record documentation herself and “try[ing] to navigate my way through…it’s frustrating.”

Seemingly Unending

Participants described what could seem like a never-ending cycle of testing and retesting, with kidney transplant seeming to hover just out of reach. Abnormalities identified on testing inevitably led to more testing and treatments that could be associated with complications. As time passed and patients accumulated health conditions and/or the conditions became more advanced, more extensive testing and treatments might be needed to maintain transplant candidacy. In this context, patients sometimes felt that they were in a race against time while watching the window of opportunity for transplant close. As 1 participant described, “You had to do one [test] and then another and then another, and then another problem would come up…and all the while time is going on…that process was soul crushing.” At the same time, the process rarely came to a complete halt unless a clear contraindication to transplant was identified, and even then, patients might be encouraged to seek a second opinion.

Life on Hold

Given how much was at stake and patients’ uncertainty about what to expect, many of those with whom we spoke described deferring other life activities and decisions during the evaluation process. We heard examples of both patients and family members quitting jobs and avoiding travel for long periods so as not to risk delaying or derailing the transplant evaluation process. Conversely, being declined for transplant, while disappointing, could also be freeing. As 1 family member explained, “He’s basically…put his life on hold…the fact that he was finally told [that] the transplant board rejected transplant, actually, it gave him a little relief…[he thinks,] now I have to move on with my life.” Some older adult participants did comment on how after years of health care experience, they had learned to be less troubled or paralyzed by uncertainty.

Responsibility Without Power

Personal Responsibility and Demonstrating Worthiness

Both patients and their family members understood that they were expected to take personal responsibility for their progress through the evaluation process. One patient described how she was told that “you have to be your own advocate. You’ve got to call [the transplant center] up and pound your fist and say…what do I have to do next?” They also understood that demonstrating personal responsibility was not just a practical necessity but also served to demonstrate their ability to manage their posttransplant care as well as their commitment to and worthiness for transplant. One family member described being accused of “not being serious” about the process by a transplant coordinator after a scheduling mix-up: “it was like a teacher saying to a student…you can’t take the test because you were late.”

Patients could find themselves being held personally accountable for health conditions that were beyond their control. For example, 1 patient described being chastised for her diet but added, “when you don’t have a lot of money, you don’t eat as healthy.” Clinicians’ questions about past health behaviors could sometimes seem to take a moralistic tone. For example, a family member undergoing living donor evaluation who was questioned about alcohol use described how her “character [felt] so attacked…he did not see me.”

Support and Abandonment

Patients recognized their dependence on the support and advocacy of individual clinicians. They were often deeply appreciative when clinicians went out of their way to help, which demonstrated “care about you as a person.” However, this kind of support was not always consistent or reliable and, as 1 participant put it, could be “personality based…[A clinician] who has the power to find information for you may decide to try and help you and they may decide not to help you.” Given how important transplant was for them, participants often took lapses and discontinuities in care very personally. One participant described how “there was a mix-up in…the form being faxed….Am I not that important to make sure it got back on time?”

Support from family was not only helpful in navigating the evaluation process but was explicitly required for candidacy. Limited family support, or support systems that were felt by the transplant team to be inadequate, could be a barrier to transplant. How patients’ family members responded to requests for help both as support persons and as potential living donors could have significant positive or negative consequences for familial relationships.

Agency and Powerlessness

The opportunity to pursue kidney transplant was seen by some participants as energizing and empowering. However, others described feeling vulnerable and beholden to a high-stakes evaluation process that they did not fully understand, that did not always go as they hoped, and over which they had little or no control. As 1 participant explained, “You feel like you have a bit of a parachute, but you don’t know exactly if that parachute’s going to work.” Abrupt notifications that patients had been declined for candidacy could seem transactional and jarring given the personal magnitude of these decisions for patients and families. One participant described receiving an unexpected call from a transplant coordinator unilaterally informing him that he had been declined as a candidate and reflected that “I would think that would be a discussion the team would have with the patient...I mean, this is my life.”

Discussion

Older adults with advanced kidney disease who participated in this study were often highly motivated to do whatever was necessary to receive a transplant. Once engaged in the transplant evaluation process, patients and family members could find themselves personally responsible for navigating what could be an opaque, fragmented, and prolonged evaluation process over which they had little control. Engaging in this process shaped other life activities and plans and could take a heavy emotional and psychosocial toll (Figure).

As part of the kidney transplant evaluation, patients embark on a process of testing and treatment intended to comprehensively characterize known health conditions, uncover undiagnosed asymptomatic conditions, and reduce the risk of future health events. This type of disease-based and future-oriented approach to care can conflict with core principles of geriatric care.¹⁸ Under a geriatric approach, treatment plans reflect not only the effectiveness of interventions in preventing and treating underlying diseases but also their time to benefit and potential trade-offs when viewed in the broader context of each patient’s values, priorities, and prognosis.¹⁸ For participants in this study, hope for transplant, however far in the future and uncertain, could obligate them to accept an extended and iterative course of screening and treatment that did not always support their other health care or life goals. Furthermore, while likelihood of receiving a transplant waned with age and deteriorating health, the evaluation process tended to continue unchecked unless and until an absolute contraindication was identified.

In many domains of health care, it is common for patients and families to perform physically, cognitively, and emotionally taxing work to fill gaps in care.^19,20 However, the homework assigned to patients and families engaged in the transplant evaluation process was not only a practical necessity but was explicitly monitored as a test of their suitability for and commitment to transplant. While an opportunity to take action to improve one’s health can be empowering and motivating for some patients, a strong emphasis on personal responsibility can also have the unintended effect of making patients feel morally responsible for health behaviors or outcomes that may be shaped by social determinants of health.^21,22,23,24 The patients with whom we spoke appreciated when individual clinicians went out of their way to advocate for them; however, this type of ad hoc support can be unreliable and inconsistent and may contribute to inequities in access to transplant.²⁵ Several participants in our study cited the critical role of family support in navigating the evaluation process, but many older adults in the US lack sufficient social support to meet this requirement of the evaluation process.^26,27

Our work highlights the importance of educating older adults with kidney failure and their families not only about transplant surgery and life after transplant^28,29 but also about the evaluation process. Patients need to have a realistic understanding of where they are in the transplant process,³⁰ the likelihood of receiving a kidney and how long this is expected to take,³¹ and how aging and changes in their health might affect their candidacy. Real-time information about these factors is especially important for older adults, who may have a more limited life expectancy and dynamic health status compared with younger adults, when trying to balance hope for transplant with other health and life priorities. Learning about the lived experiences of peers may also help patients to understand and anticipate the emotional and psychosocial undercurrents of the transplant evaluation process.³² Finally, systems improvement is needed to develop a more transparent, standardized, and evidence-based evaluation and selection process that is attuned to changes in patients’ health status and goals over time.^33,34,35

Limitations

Our work should be interpreted with several limitations in mind. The transplant process varies across the US; thus, participants in this study from the greater Seattle area may not represent the experiences of patients living in other regions. While we attempted to include participants with differing racial and ethnic backgrounds, most identified as White and non-Hispanic. While specific experiences likely vary between institutions and patient groups, we expect that themes identified in this analysis will be helpful in understanding patient experiences in the transplant evaluation process more broadly.

Conclusions

This qualitative study found that kidney transplant is often a highly desirable goal for many older adults with advanced kidney disease but the evaluation process can be demanding and take a heavy emotional and psychosocial toll. These findings underline the importance of educating older adults with kidney failure and their family members about what to expect from the transplant evaluation process and redesigning this process to be more transparent and person centered.

Supplement 1.

eMethods. Transplant Evaluation and Selection Process Interview Guides

Supplement 2.

Data Sharing Statement