Screening and Assessment of Substance Use in Hospice Care: Examining Content from a National Sample of Psychosocial Assessments

Abstract

Background:

Quality of care provided by hospice and palliative care agencies depends on a thorough understanding of the patient, the family, their history, and current risk factors. It is therefore imperative for social workers and other providers in these settings to assess patients and caregivers for substance use disorders and potential for substance misuse.

Objective:

We aimed to examine how hospice social workers in the United States screen and assess for alcohol and substance use and risk of medication diversion among patients and family caregivers.

Design/Measurements:

Using a cluster random sample of U.S. Medicare-certified hospices, we reviewed blank copies of psychosocial assessments used by hospice social workers from 105 agencies. We conducted systematic content analyses of these assessments, identifying and examining all items related to substance use or addiction.

Results:

Over two-thirds (68%) of agencies assessed substance use by patient and/or family members. Assessments tended to focus broadly on whether substance misuse was a current problem for the patient or his/her primary caregivers. Assessments were not standardized instruments and did not differentiate between drug types. No assessments directly addressed potential diversion of pain medications. Larger hospices serving more patients per day were more likely to include substance use content in their assessments.

Conclusions:

We recommend that hospice care providers implement structured substance use screening focused on both the patients and family. To stem the public health impact of prescription opioid misuse, we recommend adoption of structured screening instruments to evaluate drug diversion risk.

Introduction

Hospice providers have a challenging task of caring for individuals with advanced illness at the end of life. Such illnesses are often accompanied by severe pain or other threats to quality of life.^1,2 Pain and symptom management are more complex when a patient has a history of at-risk substance use or a substance use disorder. Individuals with opioid-related disorders may respond differently to pain medications if they have developed a tolerance to opioids.³ Patients or family caregivers in addiction recovery may perceive a prescribed pain medication as a gateway to relapse.^4,5 Interactions between substances of abuse (e.g., alcohol) and prescribed medications may also interfere with the desired medication effect.⁶ Moreover, the dividing line between safe use of medications and misuse is not easily drawn,⁷ leaving prescribing clinicians with particular challenges in meeting patients' needs. The broad term, misuse, refers to any use of a substance or alcohol that is not consistent with legal or medical guidelines.⁸ In addition, medication diversion is a concern for hospice providers who commonly serve patients in their homes.⁹

Given the distinct needs of these patients, it is imperative that individuals receiving hospice care—patients and family caregivers (e.g., spouses, adult children, or fictive kin)¹⁰—are assessed for at-risk substance use and substance use disorder. Within the hospice field, it is unclear whether providers are formally screening for these disorders. We reviewed psychosocial assessments from a national sample of hospice providers to better understand current approaches and compare them to best practices.

Epidemiology of substance use

Assessment for alcohol use, illicit drug use, and prescription medication misuse is crucial because substance use is extensive. In the United States, almost 14% of the population has a past-year alcohol use disorder, and 29% of people have a lifetime alcohol use disorder.¹¹ An alcohol use disorder is a syndrome in which problems arising from alcohol use reach a level of severity that impairs overall functioning based on criteria in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5).^11,12 Recent national data suggest an increase in the proportion of current drinkers (defined as any past-year consumption) in the population, as well as rising consumption levels and binge drinking (5+ drinks for men or 4+ drinks for women).¹³ A smaller, but substantial, percentage of Americans engage in nonmedical use of sedatives (4.1%), tranquilizers (3.4%), opioids (4.7%), and amphetamines (4.7%), defined as using medications without a prescription or in dosages and frequencies that are not as prescribed.¹⁴ Similarly, in 2013, 9.4% of Americans were past-month illicit (i.e., illegal substances) drug users.¹⁵

These numbers are particularly relevant to hospice and palliative care providers. Alcohol and drug use are associated with a range of diseases and injuries, which may necessitate hospice care later in life. For instance, heavy alcohol use is associated with increased risk of multiple forms of cancer,¹⁶ and injection drug use is associated with risk of HIV and Hepatitis C infection.^17,18 Because substance misuse is linked to serious chronic illness, it is not uncommon for those with substance use histories to be referred to hospice. Current or past substance use may also influence the patient's ability to participate in their plan of care (e.g., adherence to a medication regimen) or affect their response to pain management interventions; it may also play a role in their level of social support and overall quality of life.^19,20

Pain management and medication use in hospice care

Effective assessment and management of pain is an important component of quality hospice and palliative care.^21,22 A recent study of pain management within inpatient hospice settings found that over 90% of patients with “clinically significant pain” received an opioid, and over half of patients received a benzodiazepine during the course of their care.²³ Data from a national hospice provider also reported opioid prescriptions for more than 90% of patients and anxiolytic prescriptions for more than 80% of patients in multiple hospice venues (i.e., inpatient, outpatient, and nursing homes).²⁴

While common use of these medications is not necessarily problematic, prescribers should be aware of the substance use profile of their patients. Individuals with an opioid use disorder may have heightened pain sensitivity²⁵ and may benefit from approaches that take this into account.^26,27 More broadly, the United States is in the midst of an alarming rise in opioid-related problems such as overdoses²⁸ and opioid use disorders.²⁹ This has led to ongoing concerns about diversion of medications with abuse potential.³⁰

Even though potentially addictive drugs are prescribed in hospice, and patients may have a history of unhealthy substance use, there is limited research on rates of alcohol and drug use in these settings. In research using the CAGE questions (i.e., Cut down, family/friends Annoyed with drinking, Guilt about drinking, and having an Eye-opener), Bruera et al. found that 25% of patients with terminal cancer had lifetime alcohol problems,³¹ and Dev et al. identified a positive CAGE screen in 17% of patients in palliative care.³² In another study of cancer patients in palliative care, researchers classified 43% of patients as at risk for substance misuse and determined that 20% had a history of alcohol and/or illicit substance use.³³ Very little is known regarding the substance use profiles of caregivers and family members of those in hospice settings, even though family members may be a pathway to medication diversion.

Current state of practice: What do we know?

Current hospice quality guidelines from the National Consensus Project do not mention substance use specifically, but call for interdisciplinary treatment of psychiatric diagnoses and staff training regarding “common psychological and psychiatric syndromes.”³⁴ In addition, hospice guidelines recommend standardized scales to measure psychiatric symptoms. Although standards apply to the assessment of substance abuse in hospice care, it is unclear whether current practices reflect these recommendations. Research by Blackhall et al. on hospice programs in Virginia found that only 43.5% of agencies had policies focused on screening for substance abuse in patients, and 30.4% had a policy in place for screening family members.³⁵ In a study of palliative care fellowship programs, only 40.5% had written policies for screening patients, 16.2% for screening family members, and 27% for screening for diversion.³⁶ These studies also reported low levels of staff education and training regarding substance abuse issues. Similarly, a survey of palliative medicine fellows found that less than half (47.2%) reported having a “working knowledge of addiction.”³⁷

Screening for alcohol and other substance use, a best practice for hospice care, ultimately reflects effective clinical assessment, care planning, and treatment of patients and their families. Data suggest that patients in hospice and palliative care often have a history of alcohol or other substance use; past or current use likely influences outcomes for hospice patients and their families. However, to date, no study has examined whether and how substance use and its related problems are assessed in hospices across the United States. This study addressed the following questions: How are alcohol and other substances (illicit drugs and nonmedical use of prescription drugs) assessed and/or screened in hospice psychosocial assessments? Do assessments include the potential for medication diversion? And, if so, what is the nature and format of the assessment?

Materials and Methods

Design

Hospice providers were randomly selected from a list of Medicare-certified hospices (as of 2012) in all 50 states using a cluster sampling approach. Selected providers were contacted by phone during a three-month period in 2013–2014. Research assistants provided information about the study to hospice agencies and then requested a blank copy of the intake psychosocial assessment used by the hospice social worker.³⁸ Psychosocial assessment forms were systematically reviewed to elicit data on the nature and extent of substance abuse content. We examined any item(s) on substance use to determine format and focus (e.g., whether the item(s) targeted patients, family members, or both). Study procedures were approved by the University of Maryland-Baltimore Institutional Review Board.

Sample

The sampling frame for the current study came from the 2012 Medicare Provider of Service File, a listing of 89%–90% of all U.S. hospice organizations. Using this list, we randomly selected five agencies from each state and requested their blank psychosocial assessment. Each participating agency had to be a provider of hospice services. Prison and pediatric hospices were excluded from the sample as these agencies are population specific, and the psychosocial needs of their patients differ substantially from typical hospice patients. If we could not locate a selected provider, we attempted to find updated contact information. If these efforts were unsuccessful, we considered the agency nonoperational. Our sample included five hospice agencies from 49 states; one state only had three hospice agencies providing care within its borders, leaving a final contact list of 248 valid and eligible agencies for 50 states.

In a few cases, hospice providers agreed to participate and provided descriptive data for the study, but had reservations about submitting blank versions of their psychosocial assessment. This was especially common when hospices used a standardized assessment from an outside electronic medical record (EMR) vendor (often due to concerns about sharing proprietary information or challenges related to producing complete instruments for assessments with branching questions). In these cases, if an agency representative disclosed which vendor assessment they used and (1) we could confirm the assessment was uniform (i.e., not agency tailored); and (2) our study team already had a blank copy of the same psychosocial assessment instrument in our database, then we considered these hospices to be participants by extrapolation. In the final analytic sample, nine (8.6%) agencies, using four different vendors, participated by extrapolation.

Measures

Our research team conducted a structured content analysis of substance use assessment in hospice social work evaluations. We also analyzed data on the characteristics of the agencies.

Substance abuse assessment

Each psychosocial assessment was reviewed separately by at least two members of the research team using a structured content measure. Reviewers recorded whether and how any terms indicative of substance use or addiction were mentioned in the assessment. Discrepancies among raters were resolved through second review of documents.

Agency characteristics

Using data from the 2012 Medicare Hospice Standard Analytic File, we coded data on agency region, size, organizational type, and profit status. Variables for region were created using U.S. Census regional classifications.³⁹ Agency size, based on average daily patient census, was divided into three categories: “Small” for fewer than 26 patients, “Medium” for 26 to 100 patients, and “Large” for 101+ patients. For agency type, hospices were categorized as “Freestanding Hospice,” “Home Health Agency,” or “Hospital-based Hospice.” All agencies were coded as either not-for-profit or for-profit.

Assessment characteristics

Each assessment was coded as either an EMR or paper based.

Analysis

Agency characteristics are reported for participating hospice agencies (n = 105), as well as nonresponding agencies (n = 143). To test for sampling bias, we examined whether agency characteristics differed between participating agencies and nonresponders. Among participating agencies, we conducted bivariate tests (χ²) comparing agency characteristics based on whether they included substance use in their assessment. We also conducted a logistic regression analysis to evaluate the importance and strength of different agency factors in the inclusion of substance abuse in assessments.

Results

As shown in Table 1, participating hospices were relatively dispersed across geographic regions, with the majority in the South (30%) and Midwest (28%). Sixty-five percent of hospices were freestanding agencies and either medium sized (39%) or small (35%). Sixty percent was for not-for-profit. Bivariate tests assessing differences between agency participants and nonresponders found no statistically significant differences on measured characteristics.

Table 1.

Sample Description (n = 105)

	Final study sample (n = 105)		Nonresponders (n = 143)
	n	%	N	%	χ²	p
Region
Northeast	18	17.14	20	15.75	0.900	0.801
Midwest	29	27.62	29	22.83
South	32	30.48	44	34.65
West	26	24.76	34	26.77
Agency size (by average daily census)
Small (<26)	37	35.24	56	44.09	2.40	0.301
Medium (26–100)	41	39.05	47	37.01
Large (101+)	27	25.71	24	18.90
Agency type
Freestanding hospice	68	64.81	77	60.63	1.76	0.623
Home health agency	18	17.59	28	22.05
Hospital	19	17.59	21	16.54
For profit status	42	40.00	60	25.86	1.22	0.269
Type of assessment^a
Paper based	33	30.56
Electronic	72	68.57

Data on assessment type was not available from nonresponders.

In the study sample, 68.22% (n = 72) agencies included some assessment of substance use by the patient and/or family members. No psychosocial assessment incorporated any structured instrument such as the Alcohol, Smoking and Substance Involvement Screening Test (ASSIST)⁴⁰ or the Alcohol Use Disorders Identification Test (AUDIT) screening.⁴¹ Among assessments with some form of substance use content, 61.1% included simple checkboxes prompting clinicians to mark whether substance abuse was present. In 36.1% of assessments, different types of substances were assessed separately (e.g., alcohol vs. other drugs). Specific items related to caregiver and/or family substance use were included in 72.2% of assessments. Often, these assessments were centered on how caregiver substance use might influence patient care. There were no specific prompts in the assessments regarding medication diversion. Only a small percentage of psychosocial assessments (4.2%) included items regarding fear/concern about the patient becoming addicted to pain medication.

When testing for differences between agencies that include substance abuse content in their psychosocial assessment compared to those that do not, hospice size was the only statistically significant characteristic (Table 2). A greater proportion of large hospices include substance abuse content in their assessments (93%) compared to medium (63%) and small (57%) agencies (p = 0.006). A single multivariable logistic regression model was estimated to test for potential confounding among assessed agency correlates (Table 3). Overall, results were very similar to bivariate models in that large agencies were almost eight times more likely to include an assessment item for substance abuse than small agencies after adjusting for other agency and assessment characteristics, including profit status, region, agency type, and type of assessment.

Table 2.

Substance Assessment by Agency Characteristics (n = 105)

	Any substance use assessment
	No (n = 33)		Yes (n = 72)
	n	%	n	%	χ²	p
Region
Northeast	5	27.78	13	72.22	5.04	0.169
Midwest	13	44.83	16	55.17
South	6	18.75	26	81.25
West	9	27.27	17	65.38
Agency size (by average daily census)
Small (<26)	16	43.24	21	56.76	10.13	0.006
Medium (26–100)	15	36.59	26	63.41
Large (101+)	2	7.41	25	92.59
Agency type
Freestanding hospice	18	26.47	50	73.53	2.25	0.325
Home health agency	7	38.89	11	61.11
Hospital	8	42.11	11	57.89
For profit status	10	23.81	32	76.19	1.89	0.170
Type of assessment
Paper based	13	39.39	20	60.61	1.42	0.234
Electronic	20	27.78	52	72.22

Table 3.

Logistic Regression Model of Substance Abuse Assessment (n = 105)

	B	se	χ²	OR	p
Profit status (ref: not-for-profit)	0.721	0.528	1.87	2.06	0.172
Region (ref: Northeast)
Midwest	−0.758	0.742	1.04	0.47	0.310
South	0.209	0.790	0.07	1.23	0.791
West	−0.719	0.779	0.852	0.49	0.282
Agency size (ref: small)
Medium (26–100)	0.011	0.510	0.000	1.01	0.761
Large (101+)	2.02	0.839	5.79	7.53	0.016
Agency type (ref: freestanding hospice)
Home health agency	−0.392	0.653	0.360	0.68	0.549
Hospital	−0.086	0.662	0.017	0.92	0.900
Type of assessment (ref: paper based)
Electronic	0.452	0.535	0.716	1.57	0.398

Model fit: LR χ² = 18.69; df = 9; p = 0.028; R² = 0.163.

Discussion

Just over two-thirds of hospice agencies in our sample included content on substance use or related problems in their social work assessment forms. Larger agencies were much more likely to include substance use in their assessments, which may indicate that a higher percentage of hospice patients (>68%) are being evaluated about their substance use history. While it is encouraging that substance use is commonly included in assessment content, it is largely cursory in nature. Social work assessments used fields and checklists to cue social workers to ask about substance use, but none of the assessments included validated structured questions about substance use such as quantity, frequency, or past use of services.

Reliability and utility of unstructured assessments

When assessment materials include fields (i.e., check boxes and blanks areas on the form to fill in), but do not include more specific assessment items, social workers may not explore substance use by patient and family as specific risk factors. Because substance abuse remains highly stigmatized in healthcare, social workers may be reluctant to ask about their client's use of substances for fear of alienating them.³⁷ Furthermore, they may believe that substance use assessment is not worth the effort for a patient reaching the end of life.¹⁹ Stigma may also make patients reluctant to report a history of problems with alcohol or other drugs because of legitimate concerns they will be treated poorly by providers. Social workers may also forego an assessment of substance use due to competing demands to assess other areas, such as depression, anxiety, or bereavement risk.

Moving to structured screening in hospice care

In many areas, hospice and palliative care providers have moved from unstructured assessment protocols to increased use of structured assessment instruments,⁴² especially in areas such as quality of life and pain management. A brief screening of substance use by social workers has a number of benefits. Reliable and brief substance use screening instruments already exist and are used widely in other areas of healthcare.^41,43 Screening approaches have been paired with brief intervention models under the name Screening, Brief Intervention, and Referral for Treatment (SBIRT).^44,45 SBIRT has been implemented widely in healthcare, including primary care, emergency departments, and many other settings.⁴⁶ The SBIRT model is built on motivational interviewing approaches⁴⁷ and is therefore patient-centered, nonpunitive, and consistent with the tenets of hospice care.

Our review found that social workers in hospice care assess family substance use risk in only cursory ways, and there were no specific instruments focused on diversion risk. This is concerning since hospice patients are very frequently prescribed medications with high potential for diversion or misuse, including opioids and benzodiazepines. Recent evidence suggests that prescription opioid misuse has been contributing to increases in heroin addiction over the last 15 years.²⁸ Thus, efforts to identify and minimize diversion risks in hospice have broader public health implications. Similar to SBIRT, researchers and clinicians have called for the development and implementation of instruments that measure diversion risk, as well as protocols for managing risk.^48,49 We recommend that hospice social workers implement these or similar clinically relevant screening approaches into their routine assessment practices. Doing so could mitigate the patient's risk of poor family care and compromised pain treatment and could support family members who may be struggling with a substance abuse problem.

Although patient/family concern about becoming addicted to prescribed pain medication is a known barrier to good pain management in hospice,^50,51 our findings suggest that only a small minority of psychosocial assessments (4.2%) include content exploring such concerns. Hospice agencies should consider modifying their psychosocial assessments to screen for patient and family caregiver concerns about addiction, tolerance, side effects, and other issues that may complicate adherence to a pain management regimen. Identifying and addressing such concerns have been linked to improved pain management for patients.⁵²

Limitations

The current study provides insight into the extent to which hospice social workers in the United States include the assessment of substance use in their practice with patients and families. Nonetheless, assessment forms are limited in their ability to capture what social workers do in their actual encounters with patients. For example, social workers may be exploring substance use in their assessment conversations with patients and families even if such content is not included on the assessment document itself. It is also possible that assessment rates are actually much lower than what forms suggest, as prompts like fillable blank spaces and checkboxes may do little to shape social worker behavior or inform hospice care plans. Social workers in hospice care also practice as part of interdisciplinary teams that may include nurses, hospice aides, chaplains, and physicians; items not included in the social work psychosocial assessment may appear in others (e.g., nursing). Finally, in delving into correlates of substance abuse assessment, we evaluated a small group of potential factors. Unmeasured variables may be at the root of why some agencies include a substance abuse assessment, such as ownership structure or organizational climate.

Implications

While provider teams and clinician expertise may offset the possibility that substance use goes unexplored, we contend that valid and reliable screening measures documented in the hospice psychosocial assessment will increase consistency and overall quality of care by social workers, as well as by hospice providers in general. Future research should examine the effectiveness of brief screening approaches in improving the health and well-being of hospice patients and their caregivers. Implementation of these structured assessment models will bring hospice care in line with current initiatives seeking to bring together somatic care, mental health, and substance abuse. We envision hospice on the forefront in the emerging model of behavioral health, as it has been one of the first arenas in modern healthcare to be truly integrated.

Footnotes

Author Disclosure Statement

No competing financial interests exist.

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