To better understand the end-of-life experience of urban underserved patients we interviewed 20 English-speaking seriously ill patients at a public hospital. We found that difficult life histories impacted end-of-life experiences and patient–provider interactions in the domains of interpersonal relationships, conceptualization of death and concerns about dying, and approaches to coping with end-of-life.
Participants felt improving relationships with providers, accessible chaplaincy services, and home-based services would enhance care. These results contribute to understanding the experiences of serious illness and frame the provision of palliative care services in this population.
Our participants identified factors similar to those in the study by Steinhauser et al.25
of what constitutes a “good death” (that study did not focus on underserved patients): pain and symptom management, clear decision-making, preparation for death, completion, and affirmation of the whole person. Our participants' life-situations often compromised actualizing these values. Drug addiction often complicates pain management, and our participants perceived providers' reluctance to provide adequate pain medication because of drug abuse histories.37–40
Similar to Steinhauser and coauthors25
findings, this cohort preferred open communication with providers about diagnosis/prognosis and participation in medical decision-making. However, at times communication with providers felt rushed, and lacked focused listening. Preparation for death was seen as important, but there was little action to plan for death with respect to location of death and disposal of remains. The desire for completion involved estrangement and loss of relationships, but participants lacked opportunity or resources to make amends and attain completion. Finally, patients wanted affirmation of the whole person, treating each patient as a unique, complex person in the context of their histories and values, but some felt unwelcome in the hospital and as though the whole person was not considered.
We identified themes similar to Song and associates'13,14,26,27
work with homeless persons who were not seriously ill: a desire to discuss end-of-life concerns, seeing death as a sudden and often violent phenomenon, concerns about dying alone, fear that the body will not be respected after passing away, poor social support, poor provider attitudes causing barriers for care such as pain management, and the importance of religion. We confirm how lacking or strained relationships are common in this population and greatly influence the end-of-life experience. Patients that live estranged lives did not necessarily want similarly isolated deaths. This influences both completion and interaction with providers. Our participants saw providers as “family” or “team” members who could provide support and focused listening. Ostensibly, due to minimal social support the role of the provider is more intimate than one might find in the general population.
Some of our findings diverged from Song and coworkers. Whereas Song's participants feared a violent death, our participants feared a prolonged death—painful, alone, and muddled with regrets. For our participants, the experience of prolonged illness contradicts a possible conceptualization of death in this population. Whereas sudden death, normally observed in everyday life, is not feared, dying of terminal illness is terrifying.
Perceptions of “unwelcomeness” in health care encounters have been discussed involving nonseriously ill participants recruited at homeless shelters.41
Our study reveals that feeling “unwelcome” remains true while hospitalized and can be even more intense during the dying process. Patients often felt burdensome and undeserving of care, specifically regarding assistance with activities of daily living. This must be remedied for underserved patients for whom the hospital and staff may be the last “home” and relationships experienced before death.
While our participants' histories often decreased the quality of their end-of-life experiences, they also provided coping strategies. Serious illness was another obstacle for our participants, paling in comparison to loss of relationships, personal violence, and addiction. This led to an acceptance of death as a “what happens, happens” phenomenon—just another difficulty to overcome. The importance of self-advocacy to achieve preferences for care was a prominent theme. Many of these patients are self-reliant and resourceful for every-day survival and use these techniques to navigate the health care system while hospitalized. However, the opposite was also seen; those “beaten down” by life feel powerless to advocate for their well-being in the hierarchical hospital system. We encourage providers to be aware of this phenomenon, check-in with patients, and be prepared to be patient advocates.
Our study provides hope that the experience of seriously ill patients in public hospitals can be improved. Patient-suggested improvements, including better communication with providers, home-based medical services, and chaplaincy access, are targets of hospice and palliative care services.20–23
With regard to relationships with providers, patients requested that someone sit and listen to them; this had a therapeutic effect and is a primary component of palliative care.
Prominent despair and hopelessness at end-of-life may reflect frequent psychiatric comorbidity in this population and managing psychiatric illness is another way interdisciplinary palliative services can improve care. Additionally, chaplaincy services are an essential component of palliative care, and, given the importance of religion/spirituality for our participants, can provide a huge measure of comfort. Similar to past studies,25
though our participants accepted passing away in the hospital, many preferred to pass away at home, even though the “home” they identified was often marginal housing or the streets. Providing home-based medical services can be challenging for homeless or marginally housed patients, but may be key to improving the quality of dying for patients whose identity and social support are in these locations.
Other literature supports the idea that inpatient and home-based/shelter-based palliative care at public hospitals can fulfill a gap in care and address unique needs in these populations.19,22,42
These services can help providers attend to the “welcomeness” perceived by patients, the great interpersonal needs, and preparing for a relatively prolonged dying process in comparison to conceptual expectations of death. Having interdisciplinary palliative care services in these settings can facilitate more personal, less rushed communication with these patients, who may view the hospital staff as a more significant part of their end-of-life experience than the general population.
Our study has limitations. First, we focused on the English-speaking subset as a starting point, but non-English speakers are a significant segment of the urban underserved and face distinct barriers to communication and provision of care. Second, caregiver and provider perspectives were not elicited and are important aspects of end-of-life care. Future studies should include the experiences of non-English–speaking patients, providers and caregivers to further understand cross-cultural and multiperspective aspects of end-of-life care. Additionally, our study enrolled more men than women for unclear reasons. Although the public hospital reports serving equal numbers of men and women (of all languages36
), it may be that the English-speaking population or patients with serious illness at this hospital are predominantly male. Nevertheless, our study sufficiently represented women. Finally, our study was conducted at one location, which limits the diversity of end-of-life experiences that are represented. Larger studies at more locations are needed to confirm our findings. Our results could be used to design surveys or patient satisfaction instruments that are sensitive to the needs of the subset of underserved populations represented in this study.
In conclusion, when caring for underserved inpatients at end-of-life, providers must consider the ways in which difficult histories influence the patient experience. Although each end-of-life experience is unique, there are established “universal” components of a quality death.25
Underserved patients may require more intensive, tailored approaches to care given prolific difficult life events and minimal social support. Good communication, attention to patients' specific preferences and inpatient/home-based palliative care services in public hospitals may improve the experience for marginalized patients with serious illness.