hospice providers' key approaches to support informal caregivers in managing medications for...

Hospice Providers’ Key Approaches to Support InformalCaregivers in Managing Medications for Patients in PrivateResidences

Denys T. Lau, PhD, Brian Joyce, BA, Marla L. Clayman, PhD, MPH, Sydney Dy, MD, LindaEhrlich-Jones, PhD, RN, Linda Emanuel, MD, PhD, Joshua Hauser, MD, Judith Paice, PhD,RN, and Joseph W. Shega, MDDepartment of Pharmacy Administration (D.L.), College of Pharmacy, University of Illinois atChicago, Chicago, Illinois; Buehler Center on Aging, Health & Society (B.J., L.E., J.H.), Division ofGeneral Internal Medicine (M.C.), and Division of Hematology-Oncology (J.P.), NorthwesternUniversity, Evanston, Illinois; Bloomberg School of Public Health (S.D.), Johns HopkinsUniversity, Baltimore, Maryland; Center for Rehabilitation Outcomes Research (L.E.-J.),Rehabilitation Institute of Chicago, Chicago, Illinois; and Section of Geriatrics and PalliativeMedicine (J.W.S.), University of Chicago, Chicago, Illinois, USA

AbstractContext—Managing and administering medications to relieve pain and symptoms are common,important responsibilities for informal caregivers of patients receiving end-of-life care at home.However, little is known about how hospice providers prepare and support caregivers withmedication-related tasks.

Objectives—This qualitative study explores the key approaches that hospice providers employto facilitate medication management for caregivers.

Methods—Semi-structured, open-ended interviews were conducted with 22 providers (14 nurses,four physicians, and four social workers) from four hospice organizations around an urban settingin the Midwest U.S.

Results—Based on the interviews, the following five key approaches emerged, constituting howthe hospice team collectively helped caregivers manage medications: 1) establishing trust; 2)providing information; 3) promoting self-confidence; 4) offering relief (e.g., provided in-homemedication assistance, mobilized supportive resources, and simplified prescriptions); and 5)assessing understanding and performance. Each hospice discipline employed multiple approaches.Nurses emphasized tailoring information to individual caregivers and patients, providing in-homeassistance to help relieve caregivers, and assessing caregivers’ understanding and performance ofmedication management during home visits. Physicians simplified medication prescriptions toalleviate burden and reassured caregivers using their perceived medical authority. Social workers

© 2012 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Address correspondence to: Denys Lau, PhD, Department of Pharmacy Administration, College of Pharmacy, University of Illinois atChicago, 833 S. Wood Street (m/c 871), Chicago, IL 60612, USA, [email protected].

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DisclosuresAll authors declare that no potential conflicts of interests exist, including financial interests or affiliations relevant to the subject of thismanuscript

NIH Public AccessAuthor ManuscriptJ Pain Symptom Manage. Author manuscript; available in PMC 2013 June 01.

Published in final edited form as:J Pain Symptom Manage. 2012 June ; 43(6): 1060–1071. doi:10.1016/j.jpainsymman.2011.06.025.

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facilitated medication management by providing emotional support to promote self-confidenceand mobilizing resources in caregivers’ support networks and the community at large.

Conclusion—Hospice nurses, physicians, and social workers identified distinct, yet overlapping,approaches in aiding caregivers with medication management. These findings emphasize theimportance of teamwork among hospice providers. Future research should investigate howcommon, standardized, effective and efficient these approaches are in practice.

KeywordsHospice home services; family caregivers; pain management

IntroductionIn 2010, an estimated 1.3 million Americans age 65 and older with life-limiting illnessesreceived hospice services, with approximately 40% of them cared for in private residences.1

Although hospice providers make regular home visits, informal caregivers, namely familyand friends, provide most of the hands-on care.2, 3 Among the many caregiving duties,medication management (e.g., adhering to prescription instructions, administeringmedications, monitoring therapeutic efficacy and side effects, and avoiding medicationerrors) represents a key responsibility.4, 5 Most caregivers identify hospice nurses as theirprimary source of information for patient care and medications;6 similarly, hospice nursesbelieve that they play a significant role in educating and supporting caregivers.7 However,recent evidence shows that only 59% of home hospice patients receive assistance inmedication management from their hospice providers, and the quality of this assistancevaries by program.8 Many caregivers of hospice patients report feeling inadequatelyprepared or supported in managing medications.9, 10

Medication management entails multiple, proactive caregiving processes that go beyondpassively following prescription instructions.11 Prior research found that effectivemedication management requires caregivers of hospice patients to safely store, organize, anddiscard medications; properly administer different forms of “as needed” and regularly-scheduled medications; and vigilantly monitor common end-of-life symptoms and adverseside effects of medications.4 Caregivers also need to administer medications whileunderstanding and respecting the patient’s preferences and needs.4, 12 Given the complexnature of medication management, hospice providers play a critical role in ensuringadequate education and support for caregivers, while maintaining ongoing provider-caregiver relations.13

Despite our recent published work describing informal caregivers’ responsibilities and skillsin medication management4, 12 and the importance of relationship-building between hospiceproviders and caregivers,13 little is known about the clinical approaches that hospiceproviders employ to facilitate medication management in private residences. To date, thereare no national, comprehensive clinical standards detailing hospice providers’ role inassisting caregivers with the multiple responsibilities associated with managing medications.Practice guidelines14 of the National Consensus Project for Quality Palliative Care stipulateonly that palliative and hospice providers should promote adequate access to medications forpatients and caregivers. National Patient Safety Goals for home and hospice care,15

developed by the Joint Commission, state that hospice providers should explain allprescription medications to the patient and/or family at enrollment but provide littleguidance on the method or the content of this explanation on medications. Practice standardsin medication management, therefore, are left to the judgment and enforcement of individualhospice agencies.

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J Pain Symptom Manage. Author manuscript; available in PMC 2013 June 01.

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In this qualitative, interview-based study with experienced providers, we make uniquecontributions to the literature by providing a better conceptual understanding of the keyapproaches that hospice nurses, physicians, and social workers employ to prepare andsupport informal caregivers with medication-related tasks. This effort is a necessary firststep toward developing future assessment tools that will measure how common and effectivethese techniques are in practice, and designing evidence-based strategies that will improvethe quality of hospice care to better prepare caregivers for medication responsibilities. Thisresearch, therefore, is important to support future work that will aim to improve the qualityand efficiency of care provided by hospice agencies, increase caregivers’ confidence incaring for the patient, and ensure safe and effective symptom relief among hospice patients.

MethodsInstitutional Review Board approval was obtained from the University of Illinois at Chicagoand Northwestern University. We further verify that all patients included in the study signedinformed consent prior to study participation. AU: PATIENTS OR PROVIDERS,?

We selected four agencies (one for-profit and three not-for-profit) of different sizes thatdelivered home hospice services to diverse neighborhoods around an urban setting in theMidwest U.S. One agency had an average daily census of ≤100 patients, one had 100–200patients, and two had >200 patients. To generate diverse themes about hospice approaches infacilitating medication management, we worked with senior administrators and clinicalmanagers at each agency and purposively recruited at least one registered nurse, onephysician, and one social worker who had one year or more of hospice clinical experienceworking with informal caregivers and patients.

In total, we interviewed a convenience sample of 22 providers: 14 nurses, four physicians,and four social workers. Most hospice providers were female (n=16; 73%), White (n=18;82%), had three or more years of hospice experience (n=13; 60%), and worked at the currentagency (n=17; 77%) for one year or more. One African-American and three Asian-Americanproviders participated.

Semi-structured, open-ended interview guides contained trigger questions about: 1)providers’ encounters with the challenges, concerns, and needs of caregivers with managingand administering medications; and 2) providers’ approaches to addressing these issues inpractice. Sample questions included, “What problems have you witnessed caregiversexperience with medication-related tasks at home?” and ”How have you (or other providerson the hospice team) helped caregivers overcome these difficulties?” Probe questions wereused to prompt examples and elaboration.

All interviews were conducted by the lead investigator (D.L.), a health services researcherexperienced in qualitative research, with support from a research assistant (L.H.) at alocation chosen by the hospice provider; all but two took place at the providers’ offices.Interviews lasting about one hour were audio-recorded and transcribed. Based on a groundedtheory approach,16–18 D.L. developed topic codes to document recurrent providers’ clinicaltechniques that emerged from the data, using an iterative process of comparison acrossinterviews. Similar clinical techniques were further grouped into common categories thatdescribed providers’ clinical approaches to facilitate caregivers in medication management.(For example, nurses discussed setting up pill boxes and pre-filling syringes to helpcaregivers manage their medications. These techniques were grouped with other techniques,e.g., offering tools to help track medications, that nurses used to provide in-home medicationassistance.) Similar approaches across the three hospice disciplines also were categorizedinto themes that described their common approaches. (For example, nurses’ in-home

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medication assistance, physicians’ effort to simplify medication regimen, and socialworkers’ mobilization of supportive resources were further categorized as collective waysthat hospice providers adopted to offer relief to caregivers who needed help with medicationmanagement. The Results section provides greater detail.) To minimize potential single-coder bias, weekly reviews took place between D.L. and other core members of the researchteam to discuss coding definitions and strategies and to ensure analytical consistency of thedata across interviews. Our analysis demonstrated thematic saturation (the threshold afterwhich no new significant insights or themes emerged) occurring among our study sample(22 providers); this number is comparable with other qualitative studies.19 Atlas.ti v-5.2software (Scientific Software, Berlin, Germany) was used for data management andanalysis.

ResultsThe following five themes emerged on approaches that hospice providers collectivelyemployed to helped caregivers manage medications for patients receiving end-of-life care:1) establish trust, 2) provide information, 3) promote self-confidence, 4) offer relief, and 5)assess understanding/performance. Table 1 summarizes these approaches and shows thateach hospice discipline – nurses, physicians, and social workers – described distinct yetoverlapping techniques in aiding caregivers with medication responsibilities.

Themes were emphasized differently according to discipline. For example, nurses’ majorapproaches were to provide information tailored to the needs and preferences of individualpatients and caregivers; promote self-confidence in caregivers, using verbal encouragementand reminders of caregivers’ background knowledge; offer relief to caregivers with in-homemedication assistance; and assess caregivers’ understanding and performance in medicationmanagement during home visits. Physicians promoted self-confidence by reassuringcaregivers with their perceived medical authority, offered relief by simplifying medicationprescriptions to alleviate caregiver burden, and assessed caregivers’ understanding andpatient health status through communications with nurses and social workers. Socialworkers also played critical roles in facilitating medication management by reiterating basicinformation to reinforce caregivers’ understanding of medications; providing emotionalsupport to promote self-confidence in caregivers; and offering relief by mobilizing supportfrom social networks and the community-at-large.

Overlapping approaches among hospice disciplines included engendering trust withcaregivers and patients, providing one-on-one counseling on an as-needed basis, andassessing patients’ health (especially pain severity) during every home visit. Althoughnurses helped resolve family conflicts and mobilize supportive resources, most providersnoted that these were social workers’ primary approaches to assisting caregivers withmedication tasks.

The remainder of the results sections is broken down by each hospice discipline (nurses,physicians, social workers) and most relevant themes. Content elicited during individualprovider interviews including direct quotes are incorporated to highlight approachesproviders use to facilitate medication management. Approaches repeated across multipledisciplines are described briefly after first mention.

NursesEstablished Trust—Compared with other hospice disciplines, nurses reported that theygenerally had the most frequent interactions with caregivers and patients during regularhome visits or by telephone as triage nurses. Nurses began building rapport and gaining trustsoon after patients enrolled in hospice. One nurse said, “On the night of enrollment, our on-

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call nurse makes a ‘tuck in call’ to make sure the family got home okay and let them knowwe’re there 24-hours a day to answer any questions they have.” Establishing trust wasbelieved to be a necessary foundation for education and supportive efforts in medicationmanagement. One nurse noted, “[During the] first few visits, we talk about hospice andbuild up that relationship…Once we gain their trust, the family will be more willing to listenand follow our instructions.”

Tailored Information—Nurses made initial assessments and monitored ongoing changesin the care situation (e.g., patient health needs and caregiver preferences) to tailorinformation regarding medication management. Depending on the complexity of theprocedure, nurses employed various methods to explain medication instructions, such asverbally, in written form, and/or by demonstration. One nurse said that instead of providingpre-printed instructions, she asked caregivers to write the new information in their ownwords to promote learning. Another nurse described demonstrating a procedure as a teachingtechnique: “[If] after I described it, the caregiver still didn’t understand…I’d pull the [liquid]medicine into the dropper to show him exactly how it's supposed to be given.”

Nurses also described tailoring information according to the caregivers’ decision-makingstyle. Some caregivers were particularly adept at observation and problem-solving. A nurseexplained, “When something goes wrong, instead of saying ‘Don’t do that,’ I’d say ‘Let’sthink through that together…What do you think happened?’ I work with them to put thepieces of the puzzle together instead of just handing them the answer.” Alternatively, nursesnoted that some caregivers responded better to directives. One nurse said, “Some caregiversdon't want to decide when or how much medication to give…so I tell them to give themedicine every night before bedtime.”

Nurses cited concerns about literacy limitations that hindered caregivers’ ability to learnabout medications. Some approaches that nurses employed included explaining medicationinformation in simpler terms and repeating instructions multiple times. A nurse said, “Themore repetitive we are…the more they retain the information.” Another added, “I educatecaregivers at a level they can comprehend…For some who get confused with drug names, Iwrite on the bottle what the drug is for…I write ‘nausea’…or ‘P’ for pain.”

Nurses also emphasized the importance underlying certain medication tasks. For example, anurse said, “I explain to [caregivers] why they need to track the times they givemedications…this will let us know if the medications are working or need to change.”Finally, some nurses discussed anticipated events to help caregivers increase theirpreparedness. A nurse said, “I talk about the signs and symptoms they may start seeing andthe medications they may need to give…When the time comes, they’ll know what to do.”Nurses acknowledged the challenge of preparing caregivers for future events while notoverwhelming them with detailed information. One nurse described how she discussedmedications inside the symptom-relief (or comfort) kit to manage sudden onset ofdistressing symptoms: “If I suspect that the patient starts developing symptoms, I’d try to goover the entire kit. If there’s minimum decline [in the patient], I’d go over a few medicationseach time I visit.”

Promoted Self-Confidence—Even when caregivers understood medication instructions,nurses said that they had to help caregivers build self-confidence and overcome their fear ofcommitting errors while performing medication duties (e.g., overdosing opioids and harmingthe patient). For example, nurses gave verbal encouragement (e.g., “giving praises whenevercaregivers did things right on their own”) or watched caregivers performing new procedures(e.g., “caregivers feel better if they did it with me the first time”). Additionally, nursesencouraged caregivers to make use of their background knowledge, for example, to inform

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symptom assessment. A nurse explained, “I remind caregivers that they’ve lived with theperson for 20–30 years…they are the best people to tell if [the patient] is agitated and needshis meds.”

Offered Relief: Provided In-Home Assistance—Nurses provided caregivers with in-home medication assistance, such as pre-filling pill boxes for caregivers with cognitive orphysical limitations. A physician said, “Nurses will pre-fill syringes with liquid morphine if[caregivers] have poor vision…The nurses draw up the medicine and put 10 to 15 syringesin the fridge.” To help monitor medications, many nurses provided ad hoc, freehanddrawings of calendars and tables to help caregivers document “who gave what medicationsand at what time.” For caregivers with their own tracking systems, nurses tailored theirrecommendations accordingly. A nurse said, “Some families have their meds listed innotebooks…[or] in a computer…I read them over to make sure they are doing it right…Some tape their lists on the refrigerator so I make sure they include [“as needed”medications].” Some nurses visited caregivers and patients more often. A physician said,“[Medicated patches] need to be changed every few days…We schedule our nurse visitsaround changing dates so caregivers don’t have to.”

Assessed Understanding/Performance—Nurses continuously assessed how wellcaregivers understood medication-related information and performed medication tasks. Mostnurses said they directly asked caregivers what information they did not understand, whereasothers assessed non-verbal expressions of confusion. Some also asked caregivers to restateprescription instructions or demonstrate a newly learned procedure. A nurse said, “I don'thave a standard for doing this…I see how receptive they are and what they repeat back tome…I watch how they store the meds, take them out of the bottles, and organize the meds inthe pill boxes…I watch for red flags.” Because around-the-clock observation of caregiverswas not possible, nurses checked pill boxes as a retrospective method to assess medicationadherence. A physician said, “Nurses count pills to make sure that they're administered. Ifthere are leftover pills, the caregivers may have forgotten or don’t understand theinstructions.” Unfortunately, some medication errors were not detected until a suddendecline in the patient’s health. A nurse recalled, “We didn’t find out that a patient wasdouble-dosed with pain meds until the next day when he was completely zonked out.” Evenwhen mistakes happened, nurses said they offered constructive feedback to promote learningand prevent error reoccurrences.

PhysiciansEstablished Trust / Reiterated Information / Reassured Caregivers—Similar tonurses, hospice physicians established rapport with patients and caregivers soon afterhospice enrollment when medications were reviewed. Because of their perceived medicalauthority, physicians sometimes were called upon to reiterate medication information andprovide reassurance to those caregivers uncertain about hospice treatments. A physiciansaid, “If the caregivers are distressed about giving the meds, I tell them to call me directly…This helps allay their fears and they’re more willing to be compliant.” A nurse added, “Somefamilies don’t think the patient needs certain pain meds…so we get our physician to callthem…This reinforces our decisions to the family.”

Offered Relief: Simplified Medication Regimens—Physicians reviewed theirpatients’ medication regimens and developed their initial hospice treatment plan. Onephysician said, “Because of polypharmacy concerns, I try to simplify the patient’smedication regimen…many patients are on medications that are just extraneous.” Reducingthe number of medications also alleviated the burden of medication management forcaregivers. Furthermore, physicians discussed updating treatment plans to simplify

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procedures for caregivers (e.g., changing a pill given several times a day to a medicatedpatch applied every few days). A physician added, “For caregivers who have troubleassessing symptoms and giving medications as needed, I change the prescriptions so that themedications can be given on a schedule.”

Indirectly Assessed Understanding/Performance—Physicians said they generallydid not directly evaluate caregivers’ medication management performance because of theirlimited in-person interactions with patients and caregivers. Instead, physicians relied on theircommunication with other providers during interdisciplinary team meetings to indirectlyassess caregivers’ performance and strategize with the team on ways to help caregiversbetter manage medications.

Social WorkersEstablished Trust—Similar to other hospice disciplines, social workers emphasized theirrole in building trust with caregivers and patients as the foundation for other care services. Asocial worker said, “It’s easy to become task-oriented and try to give lots of information…that can create distance [between them and us].”

Reiterated Basic Information—Although not medically trained in pharmacotherapy,social workers reiterated and reframed information about symptoms and medications inrelatable concepts to caregivers. For example, one social worker said, “I try to bemetaphorical…I'd say, pain is like fire… It can burn a house down. But if you let the patientgrin and bear it, you may have a situation where the house is going to burn down becausethe medicine can't control the fire anymore.” Another social worker re-emphasizes theimportance of organizing medications properly: “[Some families] have medications all overthe apartment…I’d say, ‘Let’s organize this. There’s a safety concern…We don’t want youto give the wrong meds.’”

Provided Emotional Support—In addition to providing overall psychosocial support tocaregivers and patients, social workers promoted self-confidence in caregivers by facilitatingtheir role transition, particularly to that of a medication manager. One social worker noted,“It’s difficult for caregivers to start thinking, ‘Wow, [the patient] is grimacing or isbreathless…I should give her medications even though she isn’t asking for them.’” Anothersocial worker said, “Some spouses say, ‘When I took my marriage vows, I didn't sign up togive suppositories.’…They need help overcoming their embarrassment.”

Offered Relief: Mobilized Supportive Resources—Social workers helped caregiverswho needed additional assistance by mobilizing auxiliary support from caregivers’ socialnetworks, if available. A social worker said, “I identify everyone who is involved withcaring for the patient…Do [the caregivers] feel comfortable reaching out [to their neighbors]in case of an emergency?” When multiple caregivers were involved, social workers helpednurses identify the primary caregiver who could coordinate the medication managementprocess. A doctor said, “Social workers assess the family dynamics and instruct them onhow to coordinate medication responsibilities…assigning shifts to other people to help [theprimary caregiver] avoid fatigue [and make mistakes].”

When disagreements arose, social workers helped resolve interpersonal conflicts amongcaregivers. A social worker said, “Some families look for somebody to blame when thingsgo wrong…They might question each other’s motives…I spend a lot of time helping themmake group decisions.” In some cases, family support involved privately-hired caregiverswho were non-medically-trained, personal care assistants. A social worker noted, “[Somehired caregivers] refuse to give morphine…They may have agency rules about what they

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can and cannot do for the patient…We can’t recommend that [the family] switch [the hiredcaregiver] out because of that…We help the family come up with a solution.”

Additionally, social workers helped caregivers obtain community resources to alleviateoverall burden, thereby facilitating medication management. A social worker said, “Forsome families, we try to hook them up with the [city department]…at least they’ll havehome assistance for four hours every day.” Another social worker said, “For people who’reworking during the day, [caregiving is] another full-time job when they get home at night…We help them get family medical leave.”

Supplemented Assessment—Social workers often asked caregivers about whether theyhad outstanding questions and routinely assessed patient’s pain and discomfort as part oftheir home visits. Some social workers reported checking pill boxes to assess caregivers’adherence. Depending on urgency, social workers’ assessments were communicated to otherhospice members either immediately or during interdisciplinary team meetings.

DiscussionBased on in-depth qualitative interviews with experienced hospice nurses, physicians, andsocial workers, this study provides important conceptual insight into how hospice providerseducate and support informal caregivers with medication responsibilities. Findings of thisstudy suggest that facilitating medication management involves multiple approaches bydifferent hospice disciplines that extend beyond just nurses instructing caregivers on how toadminister medications according to prescriptions. The following five key clinicalapproaches have emerged from the data: (1) all hospice disciplines establish trust withcaregivers to promote learning and treatment adherence; (2) nurses provide medication-related information according to caregivers’ learning preferences, and physicians and socialworkers reiterate the information; (3) nurses promote self-confidence among caregivers toencourage successful execution of medication duties, whereas social workers providegeneral emotional support and physicians reassure caregivers with their perceived medicalauthority; (4) to offer relief to caregivers, nurses provide in-home assistance, physicianssimplify instructions, and social workers mobilize resources for caregivers; and (5) nurses,with supplemental assistance from social workers, assess caregivers’ understanding andperformance in medication management according to the prescribed treatment plan, andphysicians indirectly assessed these factors via communications with nurses and socialworkers (Table 1).

Among these approaches, each hospice discipline employs unique methods to facilitatemedication management, in part because of their different professional training andfunctions on the hospice team. For example, among all disciplines, hospice nurses have themost interactions with caregivers and patients at home and, therefore, provide most of theeducation, care, and assistance related to medication management. Physicians have theultimate prescribing authority, but because they have the least interactions with caregiversand patients, physicians need to rely significantly on other hospice providers, especiallyduring interdisciplinary team meetings, in order to make treatment decisions. Social workersmay have the least formal training in pharmacotherapy but they can facilitate medicationmanagement by supplementing nurses’ educational and assessment efforts and promotingthe psychosocial well-being and social support necessary for caregivers to effectivelyperform medication tasks. Consistent with the hospice philosophy on a team-based approachtoward total pain management,14, 20 these findings further emphasize the need for a well-coordinated interdisciplinary approach among hospice providers to help caregivers managemedications and overall distressing symptoms in patients.

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The hospice literature on assisting informal caregivers has predominantly focused on copingwith stress and grief associated with end-of-life care21, 22 and on overcoming barriers to painmanagement.5, 23, 24 To our knowledge, this study is the first exploratory analysis tohighlight hospice supportive services within the context of medication management near theend of life. For example, establishing trust, although foundational for all hospice services,may be particularly important in medication management because of caregivers’ attitudinalbarriers toward adhering to treatment plans that often involve highly stigmatized therapies,such as opioids. Hospice medication instructions can be complex because palliativetherapies often are prescribed on an “as needed” basis and can be administered in differentformulations including pills, liquids, patches, and suppositories; therefore, providinginformation on medications may need to be tailored to the caregivers’ learning preferencesand needs and reinforced multiple times by different providers on the hospice team.Promoting self-confidence to perform medication tasks may be especially relevant forcaregivers who need to overcome their fear of committing errors (e.g., overdosing thepatient on pain medications) or embarrassment with performing unfamiliar procedures (e.g.,administering suppositories).

Many of the identified hospice approaches to provide information to caregivers are alignedwith established principles in adult learning.25–27 For example, according to Knowles’theory,28 older adults have a background of experience that frames their learningpreferences and capacity. Hospice nurses may tailor medication-related information basedon caregivers’ decision-making preferences (e.g., making their own informed decisions orbeing told what to do) and health literacy levels (e.g., repeating information in simple terms,having caregivers write instructions in their own words, and/or demonstrating proceduresmultiple times). Geragogical principles in older adult learning also stipulate that older adultslearn best when there is a perceived immediate need in their situation.26, 27 In this study,some nurses help prepare caregivers not only for the immediate situation but also foranticipated future events, for example, reviewing procedures (such as calling hospice andfollowing the directions for using the symptom-relief kit) in advance of sudden decline inpatient health. Because of the stressful circumstances surrounding the end of life, hospiceproviders have to carefully provide enough information to sufficiently prepare caregivers asmedication managers while not overwhelming them with too many details.

Future research will need to examine how prevalent, standardized, and effective the clinicalapproaches identified in this study are in practice. Our interviews suggest that not all hospiceproviders use a systematic method to help caregivers with medication management, makingevaluation challenging (e.g., identify caregivers’ needs and preferences; establish objectives;develop and implement education, support, and care plans; and evaluate achievement ofgoals). For example, to evaluate caregivers’ understanding of medication instructions, somenurses would watch for facial expressions of confusion whereas others “watch for red flags.”To help caregivers track medications, some nurses would hand-draw tables and calendars,and others would augment any existing tracking systems that caregivers have alreadydeveloped. Some providers describe their approaches as “rules of thumb” that have beendeveloped over time in practice, raising questions about their effectiveness and efficiency.Potential variations in hospice approaches may be a result, in part, of inadequate formalprofessional training in being “educators/trainers,” poorly defined clinical recommendationsin this area, and unavailable standardized educational or assessment tools that providers canuse to teach and assess caregivers’ skills in medication management. Although hospiceagencies use standard assessment forms to assess patient’s pain and other symptoms, suchmeasurements do not translate into the assessment of caregivers’ deficiencies in knowledgeand skills. Future research is needed to inform the development of professional training forhospice providers to become better educators/trainers, as well as to inform the development

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of standardized, validated clinical tools to educate and assess caregivers’ ability to managemedication safely and effectively.

Our study indicates that physicians and social workers play essential roles in supportingcaregivers in medication management; however, potential barriers to implementing theirroles exist and should be further investigated. For example, previous studies suggest thatalthough patient experience with pain and health status is discussed often, concerns aboutcaregivers and their challenges with pain management may not be adequately identified ordiscussed during regular team meetings.29 The potential lack of communication aboutcaregivers’ challenges may severely limit the ability of hospice team members, particularlyphysicians who often have the least opportunity to make home visits, to coordinate andcollectively address caregiver problems with managing medications during hospice teammeetings. In addition, some social workers in this study acknowledge that caregivers do notseek (or do not know that they can seek) assistance for psychosocial needs or mediation toresolve interpersonal conflicts. As a result, they make fewer home visits, which effectivelylimits their opportunity to aid with medication management. Social workers also may facechallenges in medication management, similar to those documented in the literature, thathinder their role specifically in pain management with caregivers (e.g., limited informationsharing in interdisciplinary team meetings, inadequate time during home visit, and lack ofclinical tools to assess caregivers’ attitude and competencies).30 More efforts, therefore, areneeded to ensure that caregivers’ barriers to medication management are adequatelyaddressed during interdisciplinary team meetings and the role of social workers infacilitating medication management are valued by other hospice providers and caregivers.

This study provides a conceptual basis for the development of future evidence-basedstrategies and validated tools that will improve the quality of hospice care to better preparecaregivers for medication responsibilities. Previous pain control studies on interventionstargeting professional training show that education alone is inadequate to change providers’practices and has a limited downstream effect on improving patient pain level.31 Ourfindings further suggest that new strategies may need to consider comprehensiveinterdisciplinary team-based interventions at the organizational level and include newclinical tools in education and assessment for hospice providers to easily adopt into theirclinical practice.

The current Medicare hospice benefits do not stipulate a requirement of a clinical pharmacistand, therefore, the presence of clinical pharmacists on the hospice team is more an exceptionthan the norm. Because most hospice agencies contract with mail-order pharmacies,pharmacy consultation is often conducted via the telephone rather than in person. Furtherinvestigation is warranted to determine how pharmacists can play a greater role as membersof the hospice team to help caregivers in medication management.

Several limitations should be noted. The study uses qualitative data from a non-probabilisticsample of 22 experienced providers from hospice agencies around an urban setting in theMidwest, therefore limiting the generalizability of these findings. Further investigations areneeded in other provider groups (e.g., chaplains who are an integral part of the hospiceteam) and geographic locations. Because of the lack of national standards regarding hospicecare in supporting caregivers in medication management, local factors such as marketcompetition and organizational culture may influence clinical approaches and quality ofservice in different locations. Although our findings reflect the perspectives of individualsfrom different hospice disciplines – namely, nurses, physicians, and social workers –alternative views should be considered. For example, this study did not include theperspectives of those caregivers whom the hospice providers helped; therefore, providers’reported clinical approaches could not be validated. Furthermore, caregivers’ views could

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have supplemented our findings by recalling additional approaches and discussing theirperceived effectiveness.

Hospice providers are responsible for helping caregivers safely and effectively managemedications to provide adequate pain and symptom control for patients at home. This studyprovides a conceptual understanding of the key approaches hospice nurses, physicians, andsocial workers use to facilitate medication management. These findings can guide futuredevelopment of educational, clinical, and assessment tools in this area, as well as team-based intervention strategies to improve the quality and efficiency of hospice services.Ultimately, these efforts will benefit both caregivers by increasing their confidence andhospice patients by improving their safety and symptom management.

AcknowledgmentsThis project was supported by Award Number K01AG027295 (Principal Investigator: Denys T. Lau) from theNational Institute on Aging. The content is solely the responsibility of the authors and does not necessarilyrepresent the official views of the National Institute on Aging or the National Institutes of Health. The sponsor hadno role in the design, methods, subject recruitment, data collection, analysis or preparation of the paper.

The authors express gratitude to all of the participating hospice organizations (Horizon Hospice and Palliative Care,Midwest Palliative & Hospice CareCenter, Seasons Hospice and Palliative Care, Northwestern Memorial PalliativeCare and Home Hospice Program, and Presbyterian Homes), care providers, and family caregivers for theirvaluable insights and support in this study. They are also grateful to Drs. Celia Berdes, Rebecca Berman, Chih-Hung Chang, Judith Kasper, Simon Pickard, Robert Schrauf and Whitney Witt for their guidance during the earlystages of the study. The authors thank Leslie Halpern for her assistance during the interviews of this study.

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Table 1

Key Approaches That Hospice Providers Used to Facilitate Medication Management at Home

Key ApproachesHospice Providers

Nurses Physicians Social Workers

1. Established Trust Established trust

▪ Built rapport duringregular home visitsand telephone calls(with triage nurses)

▪ Emphasized 24-hoursupport availability

▪ Treated caregivers aspart of the team

Established trust

▪ Built rapport atenrollment andhospice inpatientvisits

▪ Establishedcaregivers’ trust inhospice treatmentswith perceivedmedical authority

Established trust

▪ Built rapport inhome visits

▪ Got to knowfamily membersand establishedrelationships

▪ Providedpsychosocialsupport

2. Provided Information Tailored information

▪ Assessed patients’needs and consideredcaregivers’preferences/capacityto learn

▪ Provided instructionsverbally, in writtenform, and/or bydemonstration

▪ Used problem-solvingapproach and/orsimple directives

▪ Used simpler termsand repeatedinformation often toaccount for healthliteracy concern

▪ Explained rationale/importance of tasks

▪ Prepared caregiversfor future events butavoidedoverwhelmingcaregivers withirrelevant information

Reiterated information

▪ Reiterated hospicerecommendationsand medicationinstructions

▪ Re-emphasizedimportance ofcaregivingresponsibility

Reiterated basic information

▪ Reframedinformation inrelatable andunderstandableterms

▪ Restatedimportance ofcaregivingresponsibility

3. Promoted Self-Confidence Encouraged self-confidence

▪ Provided verbalencouragement

▪ Witnessed caregivers’first performances

▪ Reminded caregiversof their backgroundknowledge as an asset

Reassured caregivers

▪ Reassured caregiversto improveadherence usingperceived medicalauthority

Provided emotional support

▪ Helped with roletransition tobecomemedicationmanagers

▪ Helped caregiversovercomeembarrassment

4. Offered Relief Provided in-home medicationassistance

▪ Set up pill boxes, pre-fill syringes, changemedicated patches,etc.

Simplified medication regimen

▪ Reduced the numberof medications tolessen administrationresponsibility

▪ Changedadministration

Mobilized supportive resources

▪ Acquired supportfrom caregivers’social networks

▪ Mediatedinterpersonal


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Key ApproachesHospice Providers

Nurses Physicians Social Workers

▪ Helped caregiversmonitor medicationadministration withtools based oncaregivers’ existingtracking systems

▪ Increased frequencyof home visits

schedules and/orprovide medicationsin different forms

conflicts abouttreatment plan

▪ Obtainedcommunityresources toalleviate caregiverburden

5. Assessed Understanding /Performance

Assessed understanding/performance

▪ Asked if caregiversunderstood

▪ Assessed non-verbalexpressions

▪ Asked caregivers torestate instructions ordemonstrate newprocedures

▪ Retrospectivelychecked pill boxes foradherence or assessedhealth decline

▪ Offered feedback topromote continuouslearning

Indirectly assessed understanding/performance

▪ Communicated withnurses and socialworkers duringinterdisciplinaryteam meetings

▪ Suggested strategiesand provided overallguidance

Supplemented assessment

▪ Retrospectivelychecked pill boxesor assessed declinein patient healthstatus

▪ Informally asked ifcaregivers hadadditionalquestions aboutmedications


hospice providers' key approaches to support informal caregivers in managing medications for...

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