Serious Illness and Health Care Threats to Personal Legacy Goals

Abstract

Introduction

High-quality care for people with serious illness requires understanding what matters most. Although goals-of-care conversations may emphasize values and treatment preferences, patients hold goals related to identity, relationships, and legacy; how they wish to be remembered and what they hope to leave behind. These legacy goals can shape treatment choices, yet they are rarely elicited in clinical care. The authors explored how people living with serious illness consider legacy, how legacy goals inform care decisions, and how health care supports or constrains them.

Methods

The authors conducted 1-hour telephone interviews with Kaiser Permanente Washington members who received at least 1 palliative care consultation in the prior year. Interviews were recorded, transcribed, and analyzed using inductive thematic analysis with iterative coding and consensus.

Results

Five themes emerged: 1) participants actively planned for legacy, with legacy goals often clarified by serious illness; 2) illness and its care introduced threats to legacy goals; 3) financial strain and insurance coverage were major threats; 4) participants believed their care would differ if teams understood their legacy goals; and 5) participants wanted to communicate their legacy goals to their care teams.

Discussion

Legacy goals often become more salient after a serious illness diagnosis, helping people clarify priorities and values as they approach end of life. Integrating legacy-related conversations into palliative care may enhance person-centered care by addressing identity, relationships, and meaning alongside medical preferences.

Conclusion

Serious illness and its treatment can jeopardize patients’ ability to achieve legacy goals. Interventions to elicit and support legacy goals may improve high-quality palliative care.

Introduction

High-quality care for individuals living with serious illness requires a clear understanding of patients’ goals, values, and priorities. ^1–3 Eliciting these goals enables care teams to provide treatment that aligns not only with patients’ medical preferences but also with their broader sense of identity, dignity, and spiritual well-being. ^2,4–7 Across the trajectory of serious illness, people often hold multifaceted goals concerning both their physical bodies and their social selves, goals that may shift as they adapt to functional changes, prognostic information, and evolving understandings of what matters most. ^8–12 These aims include preserving personal identity, sustaining family or cultural roles, maintaining relational continuity, and shaping how they will be remembered; goals that relate to their legacy. ⁸

Legacy goals are deeply intertwined with spiritual well-being, particularly for individuals navigating serious illness. ^8,10,13 Spiritual well-being encompasses a sense of meaning, purpose, and connectedness; dimensions that are often reinforced through considerations of how one will be remembered and the impact they have on others. ^6,14 People approaching the end of life frequently experience profound existential distress as they confront questions of mortality, meaning, and the enduring significance of their lives. ^15,16 Engaging with legacy goals can help patients affirm their identity, sustain continuity across generations, and reconcile existential concerns, fostering peace, meaning, and dignity. ^16–18 Prior research suggests that interventions such as life review and dignity therapy, which explicitly address legacy, can reduce anxiety and enhance spiritual well-being among people approaching end of life. ^17–19 Incorporating legacy-related discussions into clinical care may therefore not only serve psychosocial needs but also support the spiritual dimensions of quality care.

As illness progresses and clinical uncertainty becomes more pronounced, people commonly engage in goals-of-care conversations intended to clarify their values, guide future medical decision-making, and ensure that the care they receive reflects their preferences. ^1,4 Structured serious illness communication approaches may ask about patients’ hopes, worries, and core values. However, they rarely inquire directly about legacy-related goals; questions that could surface unarticulated fears, priorities, and aspirations that are otherwise left implicit. ^5,8 As a result, these conversations often focus primarily on treatment decisions and life-sustaining interventions, with limited attention to the legacy-related goals that may profoundly influence how people interpret their prognosis, weigh medical trade-offs, and conceptualize what constitutes an acceptable or meaningful future. The authors therefore sought to examine how individuals with serious illness consider legacy across the lifespan, how legacy goals inform decision-making near the end of life, and the extent to which these goals are recognized, integrated, and supported within clinical care.

Methods

The authors conducted 1-hour telephone interviews with Kaiser Permanente Washington members who received at least 1 palliative care consult for any disease in the past year. The authors identified potentially eligible participants using data from the Kaiser Permanente Washington electronic health record. The authors excluded people who were hospitalized or in hospice via manual chart review. The authors prioritized outreach to individuals from communities underrepresented in research. Participants provided oral consent. Interviews consisted of open-ended questions that asked participants how they defined legacy, how their goals around their legacy might impact their future health care or other choices, and whether and how they would like to communicate their thoughts on legacy with their health care team. The authors noted if and how how these goals might have changed since their illness. Interviews were recorded and professionally transcribed. The authors offered to provide each participant with their interview transcript. All study activities were approved by the Kaiser Permanente Interregional Institute Review Board.

Analysis

The authors analyzed data using an inductive thematic analysis approach. ^20,21 The coding team (authors MFG and NBH) reflected on their own professional and personal lived experiences with people living with serious illness and their expressions of legacy goals. They noted the importance of personal context. To retain the context of participant narratives, immediately after each interview, the interviewer took detailed notes, creating profiles of each story. ²² The authors reviewed these profiles to create a preliminary codelist, along with a priori codes from the literature. ^11,12 The authors then applied the code list on full transcripts using qualitative analysis software Atlas.ti, adding emergent codes. ²³ The coding team conducted a reliability check on 10% of the transcripts with the finalized code list to establish consistency in approach, designation of units of meaning, and application of codes between coders. Then, the team independently coded the remaining transcripts. The authors met weekly to discuss coding and resolve any discrepancies in code meanings via consensus. The authors drafted coding memos and engaged in a series of analysis meetings where they agreed on themes that synthesized these findings.

Results

The authors mailed letters to 103 eligible people. The authors reached out via phone to 71 people; 2 people were referred by their clinician. The authors contacted and screened 27 people, among whom 1 person was deceased, 13 declined to speak, and 14 consented to participate. Of those who consented, 1 person could not be reached, resulting in 13 interviews conducted (Table). Of those who declined to speak with the authors, the majority (8 people) shared that they found the topic interesting or relevant, but they were declining to participate due to illness progression. Three people indicated that they did not find the topic relevant, and the others did not provide a reason.

Table:

Sample characteristics

Participant number	Pseudonym	Gender	Race or ethnicity	Age, y	Legacy goal: Preserve individual identity	Legacy goal: Continue social personhood	Legacy goal: Impact the well-being of others
1	Dorie	Woman	Not Hispanic White	51		x	x
2	Anna	Woman	Not Hispanic White	68	x		x
3	Caroline	Woman	Not Hispanic White	70		x	x
4	Eleanor	Woman	Not Hispanic White	79		x	x
5	Thom	Man	Not Hispanic White	67	x		x
6	Grace	Woman	Not Hispanic White	54	x		x
7	Robin	Woman	Not Hispanic White	68		x	x
8	Ben	Man	Not Hispanic White	77			x
9	Dana	Woman	Native Hawaiian or multiracial	51	x	x	x
10	Johnson	Man	Not Hispanic White	73	x
11	Stephanie	Woman	Hispanic	54		x	x
12	Carrie	Woman	Not Hispanic White	44	x	x	x
13	Shelly	Woman	Not Hispanic White	72		x	x

Among the 13 participants, n = 10 were women and n = 3 were men. Most participants identified as White, 1 woman identified as Latina, and another as native Hawaiian/multiracial. All participants reported to be living with cancer. Cancer types included anal, breast, gallbladder, leukemia, lung, myeloma, pancreatic, and prostate. All but 1 person requested to receive their transcript. Each of the themes described in the following sections are supported by the responses of multiple participants, and several of the codes that make up each theme were applied across all study participants.

PARTICIPANTS CARED ABOUT HOW THEY WILL BE REMEMBERED AND WHAT THEY WILL LEAVE BEHIND

Participants held a range of perspectives on the concept of legacy. Although some initially found the term abstract, all participants stated that they held the following 3 legacy goals: they hoped to be remembered as individuals, to be remembered as members of various communities, and to impact others after their death. They discussed how these goals influenced life choices, including about their medical care. People described 3 major legacy goals: support the memory of one’s individual self, preserve the memory of one’s social role, and positively impact the well-being of others.

People described legacy in terms of who they were as individuals, along with their individual identity, personality, and actions. One person, Francis, shared, “Your personality, your temperament, your get-things-done, what makes you you. That’s legacy to me.” Another woman, Carrie, shared, “I want them to remember the bold crazy things; I want them to remember outrageous silly things and fun things [I did].”

People also spoke about being remembered as someone who exists embedded in networks of social relationships that will continue to exist after death. One person, Carrie, said, “I have nieces and nephews, and they're part of [my legacy], along with my grandkids and my children. I think it’s really important that they remember things that I said and how much I cared about them.” Another participant, Dana, explained that her cultural identity influenced her to think about legacy as belonging in terms of past and future. This participant said, “I’m a multiracial person and so I belong to different cultures. Part of my ethnicity is indigenous Hawaiian or Kanaka Maoli, so I think part of legacy is remembering those that came before us and paved a way for us[to] feel a sense of belonging. You're connected to all of the people that came before you and all of the people that come after you.”

Participants spoke of their legacy in relation to positively impacting others’ well-being, through financial legacies, impacting others’ education or professional development, or supporting family. Shelly explained, “It’s what your life meant to other people - being a good person, willing to go the extra steps for other people.” Thom described legacy as having a positive impact more broadly, asking, “Have I changed the world for the better in any significant way? That’s legacy to me.” Dana described her work training new teachers as affecting future generations. Dana noted, “That’s a part of my legacy, right? How I effect change in this world, not only with the people that are close to me, but the ripple effects of the people that come in contact with the people that I came in contact with.”

THEME 1: PARTICIPANTS REPORTED ACTIVE LEGACY PLANNING BEFORE AND DURING ILLNESS, WITH SERIOUS ILLNESS CLARIFYING OR CRYSTALLIZING THEIR LEGACY GOALS

Participants thought about their personal legacy throughout their lives. One participant, Eleanor, described thinking about legacy goals several different times throughout her life. Eleanor said, “Something is going to pop into your head, and you say aha, yes. Because some issue brought it up, like the cancer brought it up, or a wedding brought it up, or the birth of a child makes you think of [your legacy].”

For some participants, serious illness crystallized the nature and urgency of their legacy goals. They felt the pressure of running out of time to achieve their legacy goals. Carrie stated, “I am more conscious of having less time to be able to make sure that things get emphasized.” Caroline described wanting to write a letter to her granddaughter as a legacy goal but not knowing how to begin in her limited remaining time, saying, “I have this image of me on my deathbed and I'm like, ‘Bring me a pen and paper, and I'll write the letter, and start the morphine!’ Well, I wouldn't want to do it at that point. I would want to have already done it.”

THEME 2: SERIOUS ILLNESS AND ITS CARE PRESENT THREATS TO LEGACY GOALS

Participants described symptoms and treatment side effects as threatening to legacy. Anna shared, “Sometimes these treatments are painful, you want the people that love you to remember you not lying in a bed writhing in agony and having that be their last memory. Because people keep memory for a long time.” Carrie echoed this sentiment. “I don't want my grandkids and my children to remember me as being a little old dried-up lady sitting in the corner. I want to be a vibrant part of what everybody’s doing and be included in things as much as possible, and I want them to remember me as contributing to the family. I don't want people to remember me as whining with pain.”

Participants described how the nature of the current medical system, in which patients are seen by various specialists or different clinicians in small increments of time, can threaten legacy goals, as they don’t feel like they are known holistically. Robin described, “My sense was of things being done to me, about and to me, but not with me.” When they experienced fragmented care, they worried about being known as a whole person, and thus less likely to receive medical care that meets their goals.

“Everybody’s got a focus and that’s how modern medicine works, specialization, but the specialization also means fragmentation. There isn't anybody on the treatment team that has the whole picture, not really. Or who knows me in any kind of particularly person-way. For example, the things I've told you here I've never discussed with anyone on the treatment team, and I think it would be lovely to be able to talk to someone that has a more holistic view of me.” – Thom

THEME 3: INSURANCE COVERAGE AND MEDICAL CARE COSTS ARE MAJOR THREATS TO LEGACY GOALS

Nearly all participants named the cost of medical care as a major threat to achieving their legacy goals. Building a financial legacy was something they engaged in consciously throughout their lives as they made choices about education, careers, financial savings, and home ownership.

“One of the ways legacy was important to me and influenced what I did was my mom did not graduate high school, she was a bartender, and she worked really hard, but it was very difficult. And, so, one of the things that I did to change my legacy was to continue my education in my adult years. I changed the trajectory of my life with thinking about the things that I wanted to leave behind for my children. Being able to afford a house, being able to have insurance so that if I did get sick it wouldn't be catastrophic. Those things that will affect their lives and change the trajectory of their legacy.” – Dorie

Participants worried about losing health insurance coverage, exhausting savings, or needing to liquidate assets they hoped to pass on to their children, depleting their material legacy. As Dorie continued, “When thinking about my treatment and legacy, I always say I would like to work until the very last day. I don't want to go on disability and not get care. I don't want that financial impact on my kids.” Another participant noted:

“But sometimes that just drains so much. The treatments, just going daily for chemo and radiation. You've got your copay, you've got your radiology bill, you've got the hospital bill, it racks up so fast, and in some cases all it does is leave bad memories. Bad memories and a big debt . . . that would not have been a legacy that I would want to have left.” – Anna

Some people described a legacy goal of leaving behind no financial debt and considered stopping treatments or foregoing appointments or procedures to avoid incurring medical debt.

“So, in terms of legacy and personal ambition . . . what I mostly want to do is not leave a horrible mess behind me. . . . I looked at the potential cost of [my chemotherapy medication], it’s terrifying, and this is actually scaring me more than death is.” – Ben

“I called up the social worker and I said I want to know if I financially qualified because that will kind of help me make my decision of how I'm going to move forward. Because I worked really hard to get my house and I don't want to lose my house based on my medical diagnosis. I'm doing whatever I can to keep my house. I don't want to take the chance that I'm not financially qualified and then I lose everything and I die, and then there’s nothing.” – Shelly

Other people were concerned that the cost of care would impact the legacy they would be able to leave and were prepared to make choices to not engage in high-cost treatment to preserve that legacy. They worried that their medical debt might influence their legacy, both in terms of what they were able to leave behind and how they were remembered.

“I've told my kids that I do worry about financial things, because I don't want to be in a situation where I have to go into a nursing home and lay there for ten years and lose all my financial means that I've made.” – Carrie

“I think the closest I've honestly gotten to [speaking to my healthcare team about my legacy] is with the billing department in saying hey look, I will do what I need for them to accomplish [the treatment goals], but I'm going to go with the absolute minimum, because I'm not going to drain absolutely everything I have for it. That’s the reason I worked through my treatments is to pay for the gas money to get up there. That brings you back to how do you want to be remembered. Do you want to be remembered begging people for gas money?” – Anna

THEME 4: PARTICIPANTS BELIEVED IF THEIR CARE TEAM KNEW THEIR LEGACY GOALS, AND HAD A HOLISTIC VIEW OF WHO THEY WERE, THEIR CARE WOULD BE DIFFERENT

Most participants believed their care would be different if their care team knew their legacy goals. Anna believed that would help clinicians determine which care path to take and how to best support when making treatment choices.

“Of course they're going to tell you their recommendations based off getting you better. But if I know that I'm too exhausted, I'm tired and I don't have the finances to do something anymore, I don't want to sit through 30 min of my doctor trying to explain the benefits of a procedure I'm not going to do. That’s pointless. That wastes his time or her time, and it wastes my time. So I think it would be helpful to share [your legacy goals] with the specific provider themselves, so that you're not going through those pointless conversations. That you can focus your conversations to what’s pertinent.”

Others felt that they would feel more seen and understood if their legacy goals were known. Thom stated, “I know I would feel safer, more contained, more understood.”

“There will be some very tough, very challenging ground ahead of me. There will be a time where it’s much, much more difficult and more frightening. I wish that there was someone on the treatment team who knew me in a fuller way for when that dark passage arrives. Because the siloed approach ain't gonna help when things get dark. Cancer will ultimately win. What about when I'm facing that? The way things are, I'm afraid I will feel very alone and isolated, frightened. I don't see anything helping me except somebody that had a bigger picture.”

THEME 5: PARTICIPANTS WANTED TO COMMUNICATE THEIR LEGACY GOALS TO THEIR CARE TEAMS

Participants shared needs regarding articulating and communicating their legacy goals. Some had trouble articulating their legacy goals. Shelly shared, “I don't know if I could have really voiced what I wanted to do in the beginning.” Mandi shared her desire to write down her legacy goals, but that she “wouldn't know how to start. Where do you begin?” Others described systematic barriers, including poor patient–clinician relationships and lack of time. As Ben stated, “In an ideal world I’d want to [share my legacy goals with my clinician], but I would say I had a pretty bad oncologist [at first], so no, I wouldn't have wanted to share anything with him. But I like my oncologist now, and respect him, but he has no time at all, absolutely none.” Several participants shared that they would make use of resources in the health care system that could help articulate and communicate legacy goals.

Others wanted support communicating legacy goals from empathic team members. One participant shared that a social worker might be the best person to elicit legacy goals, because, as Shelly put it, “A social worker would be able to hear through the emotion and the anger or denial, all the things that patients go through, to hear – okay, you need to leave a legacy for your family. How do we do that? What do you want that to look like?”

Some participants had communicated their legacy goals with their care team. Grace stated, “As far as talking specific legacy, I mentioned my grandchildren and I'd say that’s why I'm [declining a second round of chemo].” One participant, Johnson, preferred to keep their legacy goals private. “I just feel it’s a very private matter, and I felt like I want to make my own decision. If I have questions or I want information, I'll ask, but I don't want them telling me what to do.”

Discussion

The authors conducted a qualitative study to explore the relationships between serious illness, legacy goals, and medical care. Five themes emerged: 1) participants engaged in active legacy planning, with legacy goals often clarified by serious illness; 2) illness and its care introduced threats to legacy goals; 3) financial strain and insurance coverage were major legacy goal threats; 4) participants believed their care would differ if teams understood their legacy goals; and 5) participants wanted to communicate their legacy goals to their care teams. The authors found that, often, the cost of medical care and the fragmentation of the health care system presented threats to legacy goals, with no clear way to share these goals or perceived threats with the care team. In particular, system-level factors relating to health insurance coverage and medical costs presented threats to one’s material legacy goals, along with symptom and side-effect burden and siloed medical care. ^24,25

The authors’ findings are largely in line with adjacent research. Specifically, the findings confirm that people hold goals related to their legacy, how they will be remembered, and how they will impact others, throughout their lives. ^8,26,27 This study suggested that people make choices about family building (including choosing a spouse and deciding whether and how to have children), careers, and housing with their legacy in mind. ⁸ For many, legacy goals may become crystallized or take on extra salience when they are diagnosed with a serious illness and as they approach the end of life. ^13,28–31 Considering one’s legacy can help people living with serious illness clarify their goals and values. ^17,28,32

This study revealed how many people living with serious illness think about the way they will be remembered and impact others after death, and that these goals may impact the treatment choices they make. The legacy goals they shared with the authors confirmed what the authors found in this scoping review, which is that people think about their legacy in terms of individual personhood, their social and community roles, and how they impact the well-being of others. ⁸ Importantly, the authors added 3 new contributions to this topic. First, the authors provided new insight by demonstrating how health care delivery and costs may function as structural barriers to the realization of legacy goals. The multifaceted challenges related to achieving goal-concordant care have been discussed, including timing and setting of goals of care conversations. ^2,33,34 However, this study added participant perspectives on how the siloed nature of US medical care leaves patients feeling unseen and their legacy goals unknown to their medical team, limiting the ability to receive legacy-concordant care. ^24,35,36

Second, these findings provided additional evidence suggesting individuals’ fear that illness-related financial hardship will continue to make negative impacts on their loved ones after their death. ^37,38 Medical care costs can erode patients’ financial resources, limiting their ability to leave an inheritance and, in some cases, leaving families with debt as an unintended and unwanted legacy. Participants reported preserving their assets for their loved ones as a high priority. This highlighted how the economics of health care can shape a patient’s illness experience, their care choices, and the long-term financial outlook of families across generations.

Third, these findings suggested a connection between patients’ legacy goals and their treatment choices. Previous research has demonstrated that the ability to consider one’s legacy is an important cultural, spiritual, and developmental task as one approaches the end of life. ^{6,13,28,39,40} Participants shared their attempts to communicate and achieve their legacy goals, even as they navigated distressing side effects, symptoms, fragmented care, and high treatment costs. Findings from this study highlighted that people want their care team to know their legacy goals, and they feel that this information could help clinicians know them more holistically and provide care that honors their personhood, values, and goals. These are all components of high-quality palliative and end-of-life care. ^2,4 Tools and practices to support goal-concordant care, such as an advance directive or living will, durable power of attorney, or Physician Orders for Life-Sustaining Treatment, focus narrowly on preferences for specific treatments (eg, resuscitation, intubation). ^41,42 Resources such as Five Wishes ⁴³ and the Serious Illness Conversation Guide ⁵ incorporate broader psychosocial factors, although no tools provide guidance for eliciting legacy goals and their influence on care choices.

Limitations

This study was conducted with English-speaking participants from a single health care system in the northwestern United States, and, thus, findings may be most generalizable to similar populations. However, Kaiser Permanente members are demographically similar to the general population. ⁴⁴ Selection bias is possible, as individuals who volunteer for research may have higher functional status, more available time, or greater interest in the topic. This could underrepresent patients with severe symptoms or limited access to care, although several people in this study reported living with distressing symptoms. Although the sample size was relatively small, it was sufficient to achieve conceptual depth and information power for qualitative analysis. ^45,46 Given the sample size, further research confirming these themes would be useful to understanding how legacy goals impact treatment choices. Further research could also include a broader variety of perspectives, as the sample was largely White women. Future research with seriously ill participants may also benefit from anticipating, and preparing for, a smaller than usual response rate due to illness or symptom progression.

OPPORTUNITIES FOR ACTION

Clinicians caring for people with serious illness likely recognize that patients have personal legacy goals that influence treatment decisions. Legacy goals can involve complex trade-offs, as patients sometimes prioritize these goals over their own physical well-being or make decisions that differ from family preferences. Clinical care teams can play a critical role by incorporating legacy goals into care planning. Attentive clinical engagement can help navigate these tensions and ensure care aligns with what matters most to patients. These findings suggested interventions like clinician training, an electronic health record nudge, or resources that assist patients in defining legacy goals may lead to high-quality, patient-centered care that addresses legacy-related values and goals.