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Palliative Care in Severe and Persistent Mental Illness

A Systematic Review

Riley, Kiernan PhD, BSN, RN; Hupcey, Judith E. EdD, CRNP, FAAN; Kowalchik, Kalei BSN, RN

Author Information
Journal of Hospice & Palliative Nursing: June 2022 - Volume 24 - Issue 3 - p E88-E93
doi: 10.1097/NJH.0000000000000855

Abstract

Severe and persistent mental illnesses (SPMIs) can be defined as psychiatric disorders requiring 2 or more years of treatment and causing a score of 50% or less on the Global Assessment of Functioning scale, which is indicative of severe disruption in occupational or school activities.1 Schizophrenia, bipolar disorder, and depression are often included as SPMIs, but by definition, SPMIs can include any psychiatric diagnosis that causes severe dysfunction and requires 2 or more years of treatment. The definition of SPMI should not be determined by diagnosis alone.1 Severe and persistent mental illness is estimated to affect approximately 4% of the population in the United States2; however, this number may change based on the definition utilized and inclusion criteria for SPMI.3 Regardless, persons with SPMIs face a severely elevated disease burden due to multifaceted factors impacting their care and quality of life.4 Furthermore, they may often have debilitating mental, physical, and social care complexities and difficulties obtaining appropriate access to care.5

The psychiatric symptomatology accompanying an SPMI diagnosis is often debilitating physically and psychosocially. While symptoms can range based on varying diagnoses and psychiatric comorbidities, common symptoms, such as anxiety, depression, hallucinations, paranoia, and disassociations, are difficult and complex to deal with and require intensive, ongoing treatment to manage.6 Physical symptoms may result from concurrent physical comorbidities, most often being coronary disease, diabetes, obesity, and chronic pulmonary disease.7 Pharmacological solutions for psychiatric disorders are similarly disruptive to a person's quality of life, with frequently unmanageable or debilitating adverse effects. For example, antidepressants are associated with nausea, vomiting, weight gain, diarrhea, sleepiness, and sexual health issues.8 The presence of psychiatric symptoms may impede care or displace trust within the health care system.6

Along with psychiatric illness and potential psychiatric comorbidities, there are often other physical comorbidities. Approximately 50% or more of persons with an SPMI diagnosis have 2 or more chronic comorbid conditions.6 The high rates of comorbid physical conditions may be due to the presence of an SPMI diagnosis, the lack of access to care, a potentially decreased immune function, and engagement in high-risk behaviors.9 Engagement in high-risk behaviors such as smoking, unprotected sex, binge drinking, or lack of exercise can be considered a symptom of psychiatric illness.10 Symptoms of SPMIs and stigma associated with a psychiatric illness often create an “othering” effect within persons with SPMIs, where they no longer feel welcome within the bounds of society, which may lead to increased suffering in persons with SPMI.11 Many times, support systems (family, friends) no longer engage with persons with SPMIs, greatly reducing necessary support and subsequently reducing their quality of life.11 These complex symptoms and societal aspects of SPMIs are justification for the implementation of palliative care for this population.

PALLIATIVE CARE

Palliative care is a holistic approach to care that focuses on structured symptom management to promote maximal quality of life for patients and their caregivers.12 Palliative care is appropriate to address physical, psychosocial, and spiritual needs of the patient.12 Palliative care should be introduced early in a chronic illness to positively impact one's quality of life throughout a disease trajectory. However, palliative care also can serve as an umbrella term for palliative services, including hospice and end-of-life care. Because of the care complexities associated with an SPMI diagnosis throughout the illness trajectory and at the end of life and the burden on an individual with an SPMI diagnosis and their family members, palliative care interventions are considered appropriate for this population.13 Despite this, palliative care is rarely utilized appropriately within the SPMI population.13

PURPOSE

The purpose of this systematic review was to identify and critique the relevant literature surrounding palliative care and persons with SPMIs as a population to determine what is currently known about the integration of palliative care and end-of-life care into the care of persons with SPMI. This will direct future research in this area through research gap identification and synthesis of current literature.

METHODS

In order to identify the most relevant literature, scholarly databases were accessed, including the Cumulative Index for Nursing and Allied Health Literature, ProQuest, PubMed, Cochrane, and PsycINFO. Keywords utilized within the searches were SPMI, severe mental illness, serious mental illness, palliative care, hospice care, terminal care, end-of-life care, and comfort care. No time limiters were used within the database searches. Each database's titles were pooled for review independently by 2 reviewers to identify relevant articles based on the predetermined inclusion or exclusion criteria. Any inclusion discrepancies were resolved in a meeting of reviewers. Supplemental Digital Content 1 (see Supplemental Digital Content 1, https://links.lww.com/JHPN/A79) illustrates the literature review process. PRISMA (Preferred Reporting Item for Systematic Reviews and Meta-Analyses) was utilized in order to report search methods and results (Supplemental Digital Content 1, https://links.lww.com/JHPN/A79).

Inclusion Criteria

Inclusion criteria were a primary research study, using any methodology, written in English, any year of publication, and including both palliative care (specialty or primary) and hospice or end-of-life care. The population of focus was persons with a serious mental illness (described as serious mental illness, severe mental illness, and SPMI).

Exclusion Criteria

Articles excluded from final inclusion were literature reviews, commentaries, editorials, project descriptions, singular case studies, or opinion pieces. Articles that discussed palliative or end-of-life care regarding a specific mental illness (such as schizophrenia or bipolar only) were not included because of the delineated scope of this review. Furthermore, because it is inappropriate to define SPMI by specific diagnoses, only broad catching terms were included (severe mental illness, SPMI). Articles focusing on caregivers only were also not included.

Critical Appraisal

A critical appraisal of the literature was conducted independently by 2 reviewers using the Mixed-Methods Appraisal Tool (MMAT).14 The MMAT is a tool developed to assist with critiquing mixed-methods research for systematic reviews. The MMAT has been found to be both reliable and valid and is particularly useful in health contexts.14 The MMAT evaluates the methodological quality of the appraised studies and aims to compare methods of quantitative, qualitative, and mixed nature.

Articles were screened initially with the following 2 questions: “Are there clear research questions or objectives?” and “Do the collected data address the research question or objective?” A “yes” response to both questions moved the article to its corresponding methodological category delineated within the tool. Methodological categories in the MMAT include qualitative, quantitative randomized controlled trials, quantitative nonrandomized, quantitative descriptive, and mixed methods. Each subsection of methodologies contains 4 answer points to consider when determining the study's quality. Any score discrepancies of individual articles were resolved in a meeting between the article reviewers.

RESULTS

Critical Appraisal

The final critique scores are included in Supplemental Digital Content 2 (see Supplemental Digital Content 2, https://links.lww.com/JHPN/A80) and represented by “*” as recommended,11 with scores ranging from one criterion met (*) to all criteria met (*****). Scores ranged from 2 criteria to 5 criteria being met, with the majority (n = 6) meeting 4 or 5 criteria, indicating high-quality studies within their respective methodologies. Overall, the current literature's (n = 9) quality is fair to good according to the MMAT evaluation, with studies presenting both qualitative and quantitative methodologies. However, there is room for improvement in both the quantity and variability of the studies. As it stands, the literature covers 3 main content areas, described below.

Content Areas

The articles' focuses were variable and related to 3 content areas around palliative care of persons with SPMIs. The authors broke down content areas into staff views, utilization of palliative care services, and end-of-life care preferences. Supplemental Digital Content 3 (see Supplemental Digital Content 3, https://links.lww.com/JHPN/A81) presents the themes within the content areas.

Staff Views

The clinical staff's point of view is an integral part of the literature on palliative care for persons with SPMIs as preliminary insights into this process can be explored to identify areas of needs or improvements. Exploration of staff views was the focus of 3 articles pertaining to end-of-life care and one pertaining to palliative care. Results from each of these qualitative studies provide similar and complementary insights.

Each of these studies identified themes from clinical staff related to their preparedness in caring for a person with SPMIs at the end of life. Jerwood et al20 identified this concept in 2 overarching themes, “the structure of the system” and “the confidence of the clinician.” They elaborated that topics that emerged within their focus groups pertained to the “siloing” of health care professionals into specializations, such as mental health or palliative care, leaving no one prepared to address when a person needs care from both specialties; allowing patients to “fall through the cracks.” This concept is echoed by Morgan,11 who identified the theme of need for continued support and education for nurses working in palliative care and/or mental health in order to prepare both to adequately provide care. Evenblij et al22 identified this topic as “little attention” to palliative care within psychiatry. However, McGrath and Forrester14 identified, from the perspective of institutional mental health staff, that there is a distinct theoretical overlap between mental health care and palliative care due to the holistic, person-centered nature of both specialties.

Issues of legality were another cross-cutting theme within the staff view literature, particularly related to risk and resuscitation in end-of-life scenarios for those with mental illness. McGrath and Forrester15 and Jerwood et al20 discussed the legality and lack of guidance or clear policy surrounding cardiopulmonary resuscitation, specifically within an institutional mental health setting. McGrath and Forrester15 further illustrated this staff concern by highlighting the follow-up of a death within the mental health institution, palliative or not, and whether it requires coronial inquest or a public hearing to determine cause of death. Coronial inquests can cause distress to clinical staff who are uncomfortable with a litigious inquiry. Some staff even reported police questioning following the death of a patient who was considered palliative because of the setting of institutionalized mental health.15

The theme of “characteristics of the client impacting care” emerged in interviews11,22 as well as focus groups.20 Morgan11 described the stigma of mental illness from the nurse impacting care, specifically in an end-of-life setting when palliative care nurses may not be as experienced in mental health diagnoses and presentations. Patient symptoms also create potential barriers; for example, hostility or paranoia can make establishing trust difficult,11 and refusal of care and aggression can create symptom management issues.11 Furthermore, the concept of family appeared in the results of each study. Jerwood et al20 and Morgan11 identified a lack of familial or social support, creating a barrier to care. Morgan11 referred to this specifically as “chaotic family systems,” which could potentially impact the nurse's safety. McGrath and Forrester15 elaborated that many institutionalized patients do not have family contact, so the institution's clinical staff becomes a replacement family. This role can create complicated grief scenarios for staff following the death of a patient.

Jerwood et al20 discussed the theme of “the problem of partnership,” which describes communication issues between team members about persons with severe mental illnesses, particularly about a person's mental health history, diagnoses, symptoms, advice on a specific patient, and end-of-life issues. This lack of communication was identified on a larger scale, such as between primary care and mental health care facilities, creating gaps in patient care transitions. This theme did not occur within the other studies, which may be attributable to the fact that Jerwood et al20 utilized focused groups, allowing for interdisciplinary communication of clinical staff within interviews.

Morgan11 discussed other themes related to advocacy and place of death. Within interviews, the theme of advocacy and specifically regrets of nurses' lack of advocacy emerged. Nurses expressed regret over patient scenarios where they should have displayed greater patient advocacy. “No Right Place to Die” was a theme Morgan11 described as frequently appearing in interviews. Nurses stated that there is no one place to go to receive appropriate care at the end of life for someone with a severe mental illness. Examples provided included mental health units, geriatric-psychiatric units, medical units, and nursing homes, none of which were identified as adequately prepared to handle persons at the end of life with severe mental illnesses.

Utilizing a quantitative approach to capturing staff views, Trachsel et al17 aimed to explore palliative care services' acceptability for persons with SPMIs by surveying psychiatrists. In their survey of 457 psychiatrists in Switzerland, more than 75% of psychiatrists agreed that palliative care was appropriate for persons with SPMIs. However, 45.4% of the respondents indicated the term “palliative” was related solely to end of life. This view of the term palliative care can potentially be attributed to the fact that almost all respondents indicated that an SPMI could be considered a terminal illness. Respondents also stated that the goal of care for persons with SPMIs is not curative but more focused on reducing suffering and increasing functioning. This idea overlaps with McGrath and Forrester's15 discussion of the similarities theoretically between palliative care and mental health care, in general, and not solely at the end of life. Exploration of staff views provides a fruitful understanding of current practices and pitfalls in the care of persons with SPMIs in a palliative context.

Utilization

The content area of “utilization” includes themes such as access21 and utilization factors at the end of life.19 Although these studies touch on similar foci, they highlight the current literature's disparate nature and what is being studied.

Lavin et al19 performed a retrospective cohort study on those who died within a specific health care system within a 4-year period to determine rates and types of health care utilization at the end of life in persons with psychiatric illnesses. Their cohort consisted of 16,214 deceased persons, 10% of whom had a psychiatric illness or a psychiatric medication prescribed. They found that having a psychiatric illness was associated with nursing home death, as well as decreased acute care services (except for emergency department) at the end of life, which was contrary to their original hypothesis that having a psychiatric illness would increase acute care services at the end of life. Nonetheless, this study's findings were valuable as the authors included a broad spectrum of psychiatric illness and captured psychiatric symptoms without formal diagnoses by including those who had psychiatric medications prescribed. Previous research had focused solely on those with schizophrenia.19

Butler and O'Brien21 also completed a retrospective cohort study, which reviewed rates of access to specialty palliative care services by persons with SPMI as compared with non-SPMI peers. Their study, taking place in New Zealand, also captured the Maori tribe culture. The authors concluded that persons with an SPMI diagnosis are 3.5 times less likely to receive a referral to specialty palliative care services at the end of life than non-SPMI peers. These findings are complementary to the findings of Lavin et al.19 Despite hypothesizing that persons with SPMI have increased services usage near the end of life, the reality may be that persons with SPMI may not even have access to services, despite a shown increased need. These studies show that persons with SPMIs have reduced access to care and may be receiving care in settings not familiar with palliation.

End-of-Life Preferences

Both Foti18 and Elie et al16 aimed to assess persons with SPMI's ability to dictate end-of-life care preferences, but with very different approaches. Foti18 assessed persons with SPMI's ability to participate in end-of-life care decisions. They used hypothetical patient scenarios and asked persons with SPMI to identify their preferences for the patient in the scenario (other) and themselves as if they were in the hypothetical scenario (self). Scenarios and answers were modeled after and collected using the Health Care Preferences Questionnaire. Answers related to self or other were compared. Elie et al16 using a cross-sectional comparative design also utilized the Health Care Preferences Questionnaire but compared responses between persons with SPMI and their non-SPMI peers. Both studies reached the same conclusion: persons with SPMI can, without significant distress, take part in end-of-life care conversations and dictate personal end-of-life care preferences. Elie et al16 found that the preferences identified by their SPMI group were not significantly different from the non-SPMI group, including the distinction of medical assistance in dying. In fact, persons with SPMI were less likely to indicate a preference for medical assistance in dying, despite their apprehension that the opposite would occur were persons with SPMI given the option.

DISCUSSION

The current literature on palliative and end-of-life care for persons with SPMIs, while providing valuable insight, is still very limited. Preliminary work detailing the barriers according to staff, rates of access, and ability of persons with SPMIs to partake in end-of-life care discussions has been started, yet there are large gaps outside and within these topical areas.

The inclusion of research detailing the entire severely mentally ill population, and excluding articles focused on one specific diagnosis, in this systematic review was a deliberate one. Previous systematic reviews effectively highlighted the dire need and gaps within the palliative care for persons with SPMI literature,13 but their conclusions relied heavily or partially on literature describing only persons with schizophrenia. While schizophrenia is a hallmark disease of the SPMI group, it tends to overshadow other illnesses and leaves a large gap in the understanding of the needs of the overall SPMI population. Using a broader, standardized SPMI definition can identify more persons suffering from SPMI including those with anxiety and depression. This identification is imperative for enhancing this literature base, mainly due to the relevance of identifying persons in need of palliative care. While excluding specific diagnosis may create a smaller literature pool, conclusions made from this systematic review are truly generalizable to the entire SPMI population without undue influence from any specific diagnosis, which is a limitation within previous reviews on palliative care for SPMIs.

Within the literature included in this review, different definitions of SPMI were utilized in nearly every article, with some of these definitions being problematic. These differing definitions lead to a fragmented literature base, where the persons it may be intending to evaluate are misrepresented or findings that are overgeneralized.3 For example, Morgan11 utilized the term severe mental illness and defined it by the diagnosis of schizophrenia, bipolar disorder, and depression. Other articles did not define their population at all.15,20 Some used more inclusive definitions, such as Lavin et al,19 who stated the inclusion of anyone with a mood or psychiatric disorder or identified use of prescription psychiatric medications. Moving forward, it is necessary to fill the gaps of this literature by utilizing unified and inclusive definitions. Defining SPMI or severe mental illness by definition alone, which is often confined to schizophrenia, bipolar disorder, or major depression, erases other psychiatric disorders' visibility, leaving these individuals without the needed care that subsequently can impact their quality of life. The lack of clarity and inclusivity of whom are actually being discussed in a literature base or leaves out those who are suffering and could benefit from palliative care. It is suggested that the definition delineated by Ruggeri et al,1 defining SPMI as psychiatric disorders requiring 2 or more years of treatment and causing a score of 50% or less on the Global Assessment of Functioning scale, which is indicative of severe disruption in occupational or school activities, is reliable and valid in categorizing those with debilitating psychiatric issues3 and should be utilized in unifying the literature moving forward.

It is also notable within this literature that the location of articles published is disparate, including studies and insights from the United States,11,16 New Zealand,21 Australia,15 United Kingdom,20 the Netherlands,22 and Switzerland.17 Although the insights provided by research from various international locations are useful, the results are not entirely generalizable, particularly within the US health care system. The United States has notably a higher rate of suicide (an indicator of population-level mental health) than other countries in this literature, yet has lower mental health services utilization in the country as a whole. Furthermore, the US health care system notoriously turns a blind eye to mental health issues. Therefore, literature based within the United States is necessary in order to understand the complexities of how the US culture and health care system are impacting persons with SPMIs. Research to address this should focus on including persons with SPMIs who are navigating the US health care system, specifically.

While preliminary insights have been provided within the areas of staff views, current utilization patterns, and persons with SPMIs' ability to participate in personal end-of-life care conversations, there are significant gaps that need to be addressed. As noted previously by Donald and Stajduhar,13 the voices of persons with severe mental illness and their perceived palliative care and end-of-life care needs are glaringly missing from the literature. Including persons with SPMIs as participants is necessary to round out the literature base and make clinically competent strides in enhancing palliative care and end-of-life care for persons with severe mental illness. If we do not know what is actually needed from the afflicted persons' perspective, how can we implement it effectively?

Furthermore, rounding out of the current literature is necessary. In exploring the views of staff, all settings for palliative and end-of-life care have not been explored. The types of staff included need to be delineated further, as barriers and facilitators may differ, depending on the health care provider's role. Understanding the differing and overlapping providers, nursing staff, direct unlicensed staff, social workers, spiritual support staff, and other members of interdisciplinary teams' needs is vital in identifying actionable barriers and facilitators. Barriers have remained a large focus of staff interviews, and although helpful, shifting focus to highlight actionable facilitators is also necessary. These barriers and facilitators effectively explored in conjunction with patient needs can provide a clearer clinical picture of what is needed for the advancement of effective palliative care for persons with SPMIs. Different settings of palliative or end-of-life care provision need to be explored further.

In addition to expanding current content areas, other areas need further exploration. These include, but are not limited to, availability of different palliative care services (primary vs specialty), and contexts in which they can occur, needs of patients with SPMIs alone or with chronic conditions, needs of caregivers of persons of SPMI in the palliative care context, and staff support. Expansion of current and exploration of more diverse content areas will contribute to a growing body of literature aimed at enhancing the end-of-life/palliative care experiences for persons with SPMIs.

CONCLUSIONS

Persons with SPMI deserve equal access to palliative care and hospice care; however, that is not currently afforded on an international level. Although preliminary insights have begun to address aspects of this larger issue, more work is needed to effectively begin to implement palliative care and hospice care services to persons with SPMIs. Some of the first steps in doing this are defining SPMI in the context of palliative care, uniting the literature on this definition, rounding out current literature content areas (staff views, utilization, and end-of-life preferences), and exploring new content areas. Findings from this review and future studies can inform practicing nurses in how best to care for this population at the end of life.

References

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Keywords:

palliative care; severe and persistent mental illness; systematic review

Supplemental Digital Content

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