CLINICAL PRACTICE IN LONG-TERM CARE Section Editor: Daniel Swagerty, MD, MPH, CMD
Improving Communication Among Attending Physicians, Long-Term Care Facilities, Residents, and Residents’ Families Peter Winn, MD, CMD, Jacqueline B. Cook, MSW, LMFT, and Wanda Bonnel, PhD, ARNP Effective bidirectional communication between attending physicians and long-term care facilities is of critical importance to ensure timely, appropriate, and high-quality care that is responsive to residents’ needs, values, and preferences. Ongoing communication with residents and residents’ families is essential to the establishment of mutual trust and respect. This earned trust and respect in turn promotes frank discussions
among long-term care practitioners and the facility staff who can then better guide residents and families through difficult care decisions. (J Am Med Dir Assoc 2004; 5: 114–122)
In long-term care (LTC) settings, attending physicians, and other healthcare providers such as nurse practitioners and physician assistants all have a critical role in supporting the nursing facility interdisciplinary team, residents, and residents’ families. The majority of residents in LTC facilities are frail and older, with a limited life expectancy and a mortality rate of approximately 25% per year.1 There is clearly a need for attending physicians and nursing facilities to offer an appropriate palliative model of care to the majority of residents in LTC facilities, given that 66% of residents now remain in nursing facilities to die rather than being admitted to hospitals for the final days of their life.2 The SUPPORT study reported that hospitals are lacking in the provision of good end-of-life care.3 Care must be responsive to residents’ and residents’ family values and preferences, as well as be culturally sensitive.4 Accordingly, it is critical for attending physicians to better understand communication issues with pa-
tients, patients’ families, and the nursing facility staff. The disclosure and transmission of medical information and the establishment of a therapeutic dialogue are key elements in providing timely and appropriate care to residents and in supporting residents’ families. Open communication and effective professional support of the resident and family can be a major determinant of both resident and family satisfaction.5 Attending physicians should note that effective communication is the cornerstone to improving the quality of medical care and to the management of clinical risk and physician liability, all of which are very important issues given today’s litigious environment in LTC. This article provides practical information for attending physicians and midlevel practitioners on improving communication with and within LTC facilities as it relates to: (1) reasons for the nursing staff to contact attending physicians; (2) modes of communication between the nursing staff and physicians; (3) communication between physicians and families regarding care plans and advance care planning; (4) physician communication and collaboration with families; and (5) the role of the facility medical director in promoting and facilitating effective communication.
Geriatrics Program, Residency Division (P.W.), Department of Family Medicine (P.W., J.B.C.), University of Oklahoma Health Science Center, Oklahoma City, OK; and the School of Nursing (W.B.), University of Kansas, Kansas City, KS. Address correspondence to Peter Winn, MD, CMD, Geriatrics Program, Residency Division, Department of Family Medicine, University of Oklahoma Health Science Center, 900 NE 10th St., Oklahoma City, OK 73104. E-mail
[email protected]
Copyright ©2004 American Medical Directors Association DOI: 10.1097/01.JAM.0000113430.64231.D9 114 Winn et al.
Keywords: Communication; long-term care; families; end-of-life care
REASONS FOR THE NURSING STAFF TO CONTACT ATTENDING PHYSICIANS The main goal of communication with and within nursing facilities is to enable informed decisions to be made by resiJAMDA – March/April 2004
Table 1. Reasons for the Nursing Facility to Communicate With Physicians Federal and state regulations ● Admission, readmission of resident ● Need for regulatory visit ● Change in resident condition and/or behavior, eg, significant weight loss ● Adverse drug reaction ● Error in administration of a medication ● Facility inability to provide treatment or service that ensures safety or security of a resident and/or staff Resident/family request ● Change in resident condition ● Advance care planning Physician orders (examples only) ● Deterioration in resident condition ● Patient specific parameters, ie blood pressure, symptom emergence, blood test results Facility policies and procedures on: ● Transfer/readmission ● Cardiopulmonary resuscitation and other resuscitative measures ● Artificial hydration and nutrition
dents, family, staff, and attending physicians. Effective communication with the physician must be timely, and subsequent decision-making by the physician must be congruent with resident and family beliefs, values, and preferences. Table 1 lists possible reasons for the nursing facility staff to communicate with physicians. Contrary to communication just being reactive to a resident’s change in condition, communication and decision-making must also be proactive, anticipating clinical scenarios or outcomes that are likely to occur given a resident’s clinical condition and comorbidities. Each resident’s preferences for care need to be clarified, understood, and respected by all members of the LTC facility’s interdisciplinary team. The care provided must be individualized to meet the multiple needs of each resident. For those residents who are cognitively impaired, decision-making will
need to be provided by family members and/or the resident’s legal representative for health care. The physician must also carefully assess each resident’s condition and decide on the benefits and burdens of all treatment options, including that of no treatment. In support of this, advance care planning (ACP) should be an integral element of each resident’s treatment. Practical information to help physicians integrate ACP into the care of residents in LTC facilities is essential.6 Each resident’s nursing care plan and treatments should be congruent with that resident’s preferences. ACP with families is further discussed in a later section of this article. Communication initiated by the facility staff with the physician can occur under several situations. Such situations include those required under federal and/or state regulations, a request by the resident or resident representative (usually family), as a result of the physician’s written or verbal orders, or facility policies and procedures. The physician should beware that facility policies and/or practice regarding cardiopulmonary resuscitation, artificial fluids and nutrition, and other life-sustaining treatments could conflict with either a resident’s wishes or a physician’s order, resulting in unwanted resuscitation and transfer of the resident to the hospital. The result could be aggressive care in the hospital from clinicians unfamiliar with both the resident’s overall condition and the resident’s and family wishes. MODES OF COMMUNICATION BETWEEN THE NURSING STAFF AND PHYSICIANS Effective communication between the nursing staff and the physician is bidirectional and must encompass mutual trust and respect. Communication can occur verbally, either by telephone or in person while at the nursing facility, or written in the medical record. Other written means include fax, e-mail, and more formal correspondence by mail. Verbal and written communication each have advantages and disadvantages (Table 2). The physician also needs to be sensitive to nonverbal communication such as facial expres-
Table 2. Verbal Communication Advantages In person or telephone Allows for immediate response Allows for exchange of information that is bidirectional
Written communication Advantages Permanent Flexible (eg, fax transmissions) Allows for broader explanation and context
Disadvantages Understanding is often assumed (ie, verbal orders at the nursing home) Prone to background distractions No “record”; dependent on speaker’s and hearer’s memory Significant filtering frequently occurs with both speaker and listener Disadvantages Perception of time-consuming; therefore, often hurried and incomplete Statement can be responded to out of context (ie, orders, fax messages) Assumption often that receiving party actually received and read messages (eg, faxes)
Source: AMDA Clinical Care Curriculum Series on Geriatric Clinical Practice in Long-Term Care. Communication Issues in the Long Term Care Facility, 2003. CLINICAL PRACTICE IN LONG-TERM CARE
Winn et al. 115
Table 3. Patient/Resident Rights Under HIPAA The right to access PHI The right to request restriction of use and disclosure of PHI The right to confidential communication The right to request amendments and/or corrections to the PHI The right to review an accounting of disclosures of PHI Adapted from references 10 and 11. HIPAA, Health Insurance Portability and Accountability Act; PHI, personal health information.
sions, gestures, attitude, and tone of voice, which can either positively or negatively influence the outcome of any communication. Effective nurse–physician communication is essential to promote excellence in resident care. Telephone call burden can be significant. Time pressures and practice priorities often preclude frequent nursing home visits, such that physiciandirected medical care in nursing facilities is often provided by telephone communication. Fowkes et al. demonstrated that the majority of calls were nonurgent, administrative, and regulatory in nature,7 and that implementation of voice mail diverted 93% of calls from the answering service, yielding significant time and cost savings. Tangalos et al. reported on the use of fax machines to transmit medical orders and medication changes from the physician’s office to nursing facilities.8 As compared with direct telephone communication, “clinic-based” geriatric nurse practitioners saved a mean of 45 minutes in telephone time per day, whereas the nursing home saved approximately 2 hours per day of nurse’s time. This study also demonstrated that fax transmission of orders and other information can eliminate transcription errors that commonly occur with traditional telephone communications. Remember that fat communication with nursing facilities must now be compliant with HIPAA privacy rules. The “perceptions” that nurses and physicians have of potential communication barriers between them showed differences between the two groups.9 Physicians, but not nurses, misperceived nursing competence to be a significant barrier to effective communication. Meanwhile, nurses perceived the lack of professional respect given to them by physicians as a major barrier. The message is clear for attending physicians. Nurse–physician collegiality and respect are paramount to good communication and patient care. HIPAA Privacy Rules As of April 2003, all healthcare providers, including nursing facilities, must have achieved compliance with the HIPAA privacy rules (Table 3). The main intent of HIPAA is to establish standards for the transmission, storage, and handling of “electronic” healthcare transactions that will protect patient privacy and confidentiality of personal health information (PHI). Thus, the electronic transmission of PHI between a physician’s office and the nursing facility (and vice versa) is protected under the HIPAA rules. 116 Winn et al.
Table 4. Examples of Conditions Appropriate for a Standardized Assessment, Guideline, or Protocol ● ● ● ● ● ● ● ● ● ● ● ●
Risk for skin breakdown/report of skin breakdown Risk for falls/postfall assessment Risk for pain/pain assessment Skin tears, abrasions, pressure ulcers Ear wax impaction Fecal impaction, constipation Congestion, shortness of breath, cough Nausea, vomiting Fevers Incident report Change of condition Sliding scale insulin (SSI) Source: References 12 and 13.
All nursing facilities should have already instituted policies and procedures to ensure HIPAA compliance. The legal considerations in implementing the HIPAA Privacy Rule in LTC facilities have recently been reviewed.10 The U.S. Department of Health and Human Services (DHHS) is responsible for enforcing the HIPAA rules that will be “complaintdriven,” as compliance will not be determined by a survey process but when a complaint is received.11 Although the attending physician is not considered a “business associate” under HIPAA (although the medical director is), HIPAA-like language will likely begin to be included in confidentiality agreements that a physician signs with nursing facilities. However, it must be stressed that the discussion and verbal sharing of medical information among physicians and nursing facility staff is not prohibited under HIPAA, but must continue to be considered as private and confidential and so handled according to state laws already in place. Resident Assessment and Reporting to Physicians Many nursing facilities have explicit guidelines on resident assessment and reporting to physicians, as well as treatment protocols (Table 4). Accordingly, each physician should become familiar with those guidelines at each facility where they care for residents, and/or consider designing their own that reflects their individual practice standard of care, which can be transmitted by fax or e-mail or kept onsite for use at the facility. Any e-mail related to patient care that is received and responded to should be printed and added to the patient medical record. Although perhaps an onerous procedure, to do so can decrease physician liability and increase medicolegal protection. The medical director of each nursing facility should regularly review the facility’s protocols and guidelines to ensure that they are both consistent with “best practices” and are evidence-based. Use of a facility’s protocols and guidelines could save office and telephone time. Utilization of standardized procedures and protocols in skilled nursing facilities in California was studied in a quasiexperimental study.12 Postintervention, 81% of problems were treated within 20 minutes in the intervention nursing homes compared with 48% for control homes. There was a 35% to 60% decrease in telephone calls at intervention facilities, in JAMDA – March/April 2004
Table 5. Suggested Strategies for Attending Physicians that Could Improve Communication With Nursing Facilities Promote a collegial relationship that is interdisciplinary Problem-solve to attain goal-directed outcomes congruent with resident wishes/needs Use midlevel practitioners to facilitate follow-up communications and visits Identify a consistent office person to receive and triage calls, faxes Establish a consistent schedule for resident rounds Perform timely interim visits/evaluations for resident’s change in condition Ensure adequate coverage/protocol for after-hours calls and when out of town
contrast to a 5% to 20% increase for control facilities during the 2-week period after a 3-month orientation and implementation period at the intervention facilities. Common problems that were selected for development and implementation of standardized procedures included skin tears, weight loss, noninjury falls, pressure ulcers, abrasions, perineal excoriations, and constipation (cumulative 32.5%). Other clinical problems identified during the 2-week collection phase were pain (6.5%), congestion/shortness of breath/cough (12.2%), urinary tract infection symptoms (6.1%), edema (3.8%), vomiting (3.3%), and fever (2.9%), whereas other clinical problems, each with a prevalence of less than 2%, accounted for the remaining 32.7%. Standardized procedures and protocols were used as a means for initiation of routine care without the need to contact an attending physician before beginning treatment.13 Barriers to implementation of such a potentially successful initiative include staff turnover, state-specific acceptance/applicability, and lack of support by the nursing facility, often as a result of their perceived risk for deficiencies during state surveys if such standardized procedures are in use. Further studies are needed to determine whether such standardized assessment and treatment protocols actually improve both the quality of care and specific outcomes for residents. By formalizing communication between nursing facilities and their practice, physicians can decrease the burden of phone calls and pages, with an increase in efficiency. The use of midlevel practitioners (nurse practitioners, physician assistants, clinical nurse specialists) can further facilitate these interactions. Additional strategies are suggested to improve communication with nursing facilities (Table 5). THE RESIDENT’S NURSING CARE PLAN AND ADVANCE CARE PLANNING BETWEEN PHYSICIANS AND RESIDENTS’ FAMILIES The Omnibus Budget Reconciliation Act of 1987 (OBRA ’87) requires that all nursing facilities that receive Medicare and/or Medicaid reimbursement use the Resident Assessment Instrument (RAI) as an integral approach to the care of residents. Each resident’s care plan must be individualized and determine reasonable objectives and strategies that promote the restoration, improvement, and/or maintenance of physiCLINICAL PRACTICE IN LONG-TERM CARE
cal, cognitive, emotional, and psychosocial well-being, as long as the interventions are practical and not burdensome to the resident. Periodic review by the attending physician of each resident’s Minimum Data Set (MDS) and nurse’s care plan enables the physician to confirm each resident’s level of functioning. Currently, Medicare reimbursement to physicians for care plan oversight is “included” in the reimbursement rate for nursing facility visits (codes 99301–99303 and 99311–99313) and thus cannot be billed as a separate charge. This is in contrast to care plan oversight for home care and hospice care (codes G0181 and G0182, respectively), which are reimbursed by Medicare if oversight by the physician is documented to be 30 minutes or more per month for a patient. A resident’s nursing care plan must be completed on admission, updated quarterly and annually, as well as when a change in condition occurs or on readmission to the nursing facility. When issues and concerns arise during a resident’s care plan meeting, the nursing staff will likely contact the resident’s attending physician for guidance and appropriate orders that will address the change in the nursing care plan. The staff could request that the physician perform a visit to the nursing facility to evaluate the resident. Such a requested and unscheduled visit is a reimbursable service for the attending physician (and any consulting physician), and it is prudent for the physician’s note in the resident’s chart to reflect and document the need and order for this requested visit. Residents and their families have the right to attend the nursing care plan conferences, and they should be encouraged to do so, although many family members decide not to attend despite being notified. Often the resident cannot attend as a result of physical frailty or cognitive impairment, either of which could limit their ability to participate effectively. Unfortunately, there is not a requirement or any reimbursement by Medicare or Medicaid for physicians to attend these care plan meetings. Time spent in a family conference or care planning could be bundled into the face-to-face visits with the patient and billed as CPT code 99302–99303 or 99312– 99313 depending on the extensiveness of the history, physical examination, and complexity of medical decision-making involved. Physician–family conferences at nursing facilities can provide insight and clarification of a resident’s and family’s choices for care and help determine which treatments would likely be of benefit or of unacceptable burden or risk to the resident. ACP can serve as a forum for residents and families to discuss resident values and to determine treatment preferences before a change in resident condition.6 The process of ACP involves three tenets. First, ACP seeks and provides guidance as to the resident’s beliefs, values, and preferences. Second, the resident’s preferences and choices must be communicated to and often negotiated with the attending physician, facility staff, and other members of a resident’s family. Third, the agreed-on choices, the antecedent discussion, and review of any instructional directive such as a living will or other similar advance directive for health care all need to be documented by the attending physician. Physicians are encouraged to request a family conference Winn et al. 117
soon after admission of a resident to the nursing facility. This meeting can be very helpful in promoting mutual trust and respect, which is the foundation to effective communication and shared decision-making. It is also an opportune time for the physician to review any documents pertaining to healthcare preferences and decision-making. These can include a resident’s intensity of treatment preference (eg, do-not-resuscitate), any advance directives for health care and/or power of attorney, be it durable or not, and whether it pertains to the person’s financial and/or healthcare decisions. All physicians should document in the resident’s medical record their participation in the nursing care plan meeting and family conferences. The progress note should include who attended the meeting, what was discussed, and any change in the care plan for the resident. This note can communicate vital information to staff members of the nursing facility. Remember that the resident’s nursing care plan should match both the nurse’s treatment orders and the physician’s progress notes and vice versa. PHYSICIAN COMMUNICATION AND COLLABORATION WITH FAMILIES Entering an LTC facility, even under the most favorable circumstances, can be an emotionally wrenching experience for the resident and his or her family. Often under conditions created by unanticipated, precipitous medical crises, this event can become fraught with high emotional intensity. Whether anticipated or not, the experience is likely yet another in a series of first-time events for which the entire family lacks a meaningful prior experience. Most of these developments involve loss, and many are amplified by an accumulation of ungrieved or incompletely grieved losses. When guilt, grief, anger, and fear of losing control prevail, family members often feel overwhelmed and vulnerable. Family members in the throes of excessive care– burden stress and emotion could overreact in an uncharacteristic, highly emotional manner only to become more in control as stress abates. Caregivers, in the words of Arthur Frank, “. . .are the other halves of illness experiences. The care they give begins by doing things for the ill person, but it turns into sharing the life they lead.”14 Family members might have contributed only in limited ways when their relative lived in the community, or they could have provided extensive care for a protracted period of time. In either circumstance, caregivers vary in their ability to share or to relinquish their role. The belief that families abandon their relatives subsequent to nursing home placement has been exposed as a myth. Many family members remain actively involved, providing invaluable social interaction and emotional support, assisting with selected instrumental and basic activities of daily living, as well serving as ardent advocates for the duration of their relative’s stay in the nursing facility. Physicians and the facility’s care team have a crucial role in facilitating the family’s adaptation to their loved one’s stay at the facility. It should be acknowledged that newly admitted residents and their families are often bereft of a sense of direction, predictability, and control and could become very dependent on the facility staff and healthcare practitioners. 118 Winn et al.
“The chief consequence of dependency is that we are forced to count on the kindness of others.”15 The need to be responded to in a supportive, informative manner by the physician and members of the care team has the power to comfort, reassure, and restore a modicum of control. Levenson16 has succinctly stated that: “. . .Attending physicians must play an important role in discussing medical condition, prognosis and medications with families. They should recall that most residents and families are not well prepared for facing long-term care, do not understand its nature and limitations, have not been well informed about medical problems, do not fully understand the prognosis, and have little idea of why most of the medications are being prescribed. . .. Many misunderstandings and much of the anger of families can be prevented by appropriate, timely information provided by physicians. . .”
Sharing of information, however, is a two-way street. The therapeutic triangle comprised of physician–patient–family, whether or not family members are physically present, is a very useful concept.17 Family members are termed “full-time physician’s assistants” and should be afforded the potential power of their active inclusion. Relatives and surrogate family are invaluable sources of personal history and background information for the nursing home resident who is often too ill or incapacitated to tell their story. The more fully the physician and other practitioners are acquainted with important remnants of life history, achievements, values, idiosyncrasies, and vulnerabilities, the greater the likelihood that care will be sensitive to religious convictions, health beliefs, cultural and ethnic variables, and preferences for treatment interventions. Family composition, relationships, and multigenerational patterns of disease and glimpses of family culture should be valued. It is also important to establish with whom information is to be shared (as is now required under the HIPAA privacy rules), particularly if the patient has a designated healthcare proxy. Clarifying lines of communication is imperative in clinical situations in which rifts, active antipathy, or past incidents of exploitation or abuse are part of the resident’s family history. A different way to think of this two-way process of communication is that we are negotiating how power will be shared in the physician–patient–family relationship, providing reassurances about our ongoing accessibility and responsiveness to their needs, and enhancing prospects of a more satisfactory outcome for all involved. Five levels of physician involvement with families have been delineated, ranging from minimal emphasis on family factors to family therapy18 (Table 6). Physicians can enhance their effectiveness in communicating with patients and families by selectively incorporating these perspectives and skills. Most physicians communicate by choice with families primarily at level 2 (ongoing medical information and advice), level 3 (feelings and support), and level 4 (systematic assessment and planned intervention). Obviously, the extent to which this is or is not done will depend on preferences, skills, and comfort level of the physician, purpose of the contact, amount of time available, and receptivity of the family. JAMDA – March/April 2004
Table 6. Levels of Physician Involvement With Families Level 1: Minimal Emphasis of Family This baseline level of involvement consists of dealing with families only as necessary for practical and medical legal reasons, but not viewing communicating with families as integral to the physician’s role or as involving skills for the physician to develop. Level 2: Ongoing Medical Information and Advice Knowledge Base: Primarily medical, plus awareness of the triangular dimension of the physician–patient relationship. Personal Development: Openness to engage patients and families in a collaborative way. Skills: Six skills in communicating, questioning, listening, advising, and guiding communication, recognizing gross family dysfunction and referring to therapist. Level 3: Feelings and Support Knowledge Base: Normal family development and reactions to stress. Personal development: Awareness of one’s own feelings in relationship to the patient and family. Skills: Six skills in eliciting concerns and effects for family of patient’s condition, empathic communicating, listening, advising, assessing, and referring for family therapy.
Level 4: Systematic Assessment and Planned Interventions Knowledge Base: Family systems. Personal Development: Awareness of one’s own participation in systems, including the therapeutic triangle, the medical system, one’s own family system, and larger community systems. Skills: Nine more highly refined skills in engaging families and assessing functioning and dysfunction, conducting conferences with difficult-to-engage families, reframing problems with a view toward solutions, generating alternatives for improved coping, and promoting collaboration among family members. Level 5: Family Therapy Knowledge Base: Family systems and patterns whereby dysfunctional families interact with professionals and other health-care systems. Personal Development: Ability to handle intense emotions in families and self and to maintain neutrality in the face of strong pressure from family members or other professionals. Skills: Specialized training in family therapy for dealing with entrenched family dysfunction, high levels of family resistance, and negative affect that exceed the level of training of family physicians. Skills: Specialized training in family therapy for dealing with entrenched family dysfunction, high levels of family resistance, and negative affect that exceed the level of training of family physicians.
Adapted from Table 1 in Doherty WJ, Baird MA. Developmental levels in family-centered medical care. Fam Med 1986;18:153–156.
For physicians, whose training and practice experience has consisted primarily of one-to-one interviews for the purpose of conveying medical information, meeting with several persons and family members could turn out to be a challenging, perhaps even daunting, experience. Likewise, sharing responsibility for the process of an interview so that families are empowered to be active participants could also require a change of style for the physician to one of facilitator rather than leader. This change in style will involve actively extending the focus of attention to include observing responses of patients and family members. Both nonverbal (facial expressions and body language) and verbal (statements that affirm, modify, and refute) responses signal that the messages being sent are either being received or going awry. Physicians’ past training and practice experience have refined their powers of both observing and analyzing their observations to direct subsequent action. These very skills are the same ones developed by family therapists in the realm of observing and guiding the process while interacting with families. Family members, and at times physicians, could experience strong emotional responses when discussing issues that are difficult to face. Fear, guilt, grief, anger, and remorse are common. Several potential targets for anger directed by family members have been enumerated, including anger directed toward the patient, other family members, medical and other health professionals, “outside forces,” and God.19 When resident and family expectations for recovery from progressive disease and decline are unrealistic, intense displays of grief and CLINICAL PRACTICE IN LONG-TERM CARE
anger could be directed toward the physician by the resident and family members. Shifting the focus of discussions to this new reality for them and acknowledging the understandable disappointment and grief that the new information has aroused could be the most helpful response. When strong emotions surface, it is most fruitful to sustain a nondefensive, supportive, problem-solving perspective, seeking clues to issues signaled by strength of emotion. The attending physician stands to benefit from becoming an empathic presence to whom strong emotions can be expressed. When communication becomes disordered, the major challenges for attending physicians are to bridle personal reactivity and to sustain engagement with the family. The process of identifying misunderstandings and collaborating to restore clarity requires participation by all involved. When the physician has made an error or oversight, then an apology could be in order. As the resident’s goals of care shift from aggressive intervention to receiving comfort care, an explicit discussion of alternative options for care and possible outcomes must be candidly but sensitively explored. A balanced discussion of alternatives for end-of-life and palliative and comfort care should include reassurance that the patient and family will not be abandoned during the trajectory of illness. Discussing the philosophy and goals of palliative care with patients and patients’ families requires both a common understanding of the term’s meaning and proficient physician communication skills. Open-ended questions about end-oflife care can aid physicians in exploring the patient’s spiritual, Winn et al. 119
Table 7. Potentially Useful Open-Ended Questions About End-of-Life Care “What concerns you most about your illness?” “How is treatment going for you (your family)?” “As you think about your illness, what is the best and the worst that might happen?” “What has been most difficult about this illness for you?” “What are your hopes (your expectations, your fears) for the future?” “As you think about the future, what is most important to you (what matters the most to you)?” Potentially useful questions with which to explore spiritual and existential issues “Is faith (religion, spirituality) important to you in this illness?” “Has faith (religion, spirituality) been important to you at other times in your life?” “Do you have someone to talk to about religious matters?” “Would you like to explore religious matters with someone?” More direct questions that could be useful with patients who want to discuss spiritual and existential issues “What do you still want to accomplish during your life?” “What thoughts have you had about why you got this illness at this time?” “What might be left undone if you were to die today?” “What is your understanding about what happens after you die?” “Given that your time is limited, what legacy do you want to leave your family?” “What do you want your children and grandchildren to remember about you?” Adapted from reference 20.
religious, and existential issues20 (Table 7). Physicians’ attempts to inquire into these issues can lessen feelings of aloneness and abandonment and, through compassion, offer opportunities for families to find comfort and resolution. Physicians should not hesitate to ask nurses, social workers, family therapists, chaplains, psychologists, and psychiatrists to respond to the patient’s and family’s suffering. Another challenge to attending physicians is the acquisi-
tion of crosscultural understanding of illness, suffering, and dying. Failures to do so can result in lack of trust/faith in the physician, increased desire for aggressive care, unnecessary suffering, disagreement, and conflict. Physicians in LTC facilities have a responsibility to provide culturally competent care.21 There are six specific issues for end-of-life care that are influenced by culture. Specific techniques are important for facilitating crosscultural discussions and identifying issues that
Table 8. Techniques for Identifying and Addressing Cultural Issues in End-of-Life Care Issue and Possible Consequences
Techniques/Strategies to Address the Issue
Responses to inequities of care Lack of trust Increased drive for aggressive care Lack of collaboration with patient/family Dissatisfaction with care
Address directly, acknowledge different background Understand and accommodate desires Explicitly strive to achieve best care possible Improve access to care providers
Communication/language barriers Bidirectional misunderstanding Unnecessary suffering
Avoid medical and complex jargon Check for understanding Hire bilingual, bicultural staff Use professional translators
Religion and spirituality Lack of faith in the physician Lack of adherence to treatment
Acknowledge faith and spiritual needs Inquire about illness experience/strength to cope
Truth telling Anger, mistrust Patient family seek care elsewhere Could promote hopelessness
Determine how to share information Be cognizant of nonverbal or indirect communication during discussions
Family involvement in decision-making Disagreement and conflict between family and medical/ nursing staff Hospice care Reduced use Desire good quality of end-of-life care
Ascertain and engage key family members in discussion
Emphasize benefit as an assistance to family, not a replacement
Adapted from reference 21. 120 Winn et al.
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Table 9. Roles and Responsibilities of the Medical Director That Support Effective Communication in Long-Term Care Facilities Ensure that practitioners perform regulatory visits Promote practitioners visit/assess resident “change of condition” in a timely manner Educate practitioners (newsletters, meetings, one-on-one) Help resolve staff, family, or practitioner conflict Provide consultation to determine/support terminality in a resident Oversee process of care planning Ensure establishment of channels for open communication and feedback such as resident council, family council, support group Establish facility ethics committee Promote use of resident and family satisfaction surveys Member of facility committees: infection control, quality assurance, ethics, nursing home quality initiative (NHQI) Establish, chair a physicians’ advisory committee Note: Some of these roles and responsibilities are widely accepted, whereas others are only suggested and not required.
are important to end-of-life care (Table 8). Attending physicians must remember that culture can influence the attitudes of patients and families, beliefs, context, decision-making styles, and the religious and community environment within which the patient and family live. However, the physician must guard against the cultural stereotyping of patients. Additional practical information that promotes clinical empathy in physicians in a crosscultural setting is discussed by Coulehan et al.22 It is often unclear whether a patient’s language or cultural practices prohibit discussing certain topics or revealing certain information. The physician’s empathic attempts to understand a patient’s culture and how it relates to medical care can in itself promote trust among and within different ethnic populations.23 ROLE OF THE MEDICAL DIRECTOR IN COMMUNICATION ISSUES Effective communication in nursing facilities must espouse timely and effectual decision-making among all stakeholders. Each resident’s multidimensional needs must be consistently identified and addressed. Accordingly, the facility medical director has a vital responsibility to identify and correct communication barriers that could compromise the provision of good patient care. Solutions to such issues could entail the writing of facility policy and procedures, guidelines, and protocols. Medical directors have a responsibility to ensure that all attending physicians and other practitioners see their patients in a “ user-friendly” atmosphere (Table 9). An essential medical director function is enabling the attending physician to provide high-quality care in a supportive clinical environment. However, federal and state regulations can be onerous to facility staff and attending physicians. Attending physicians must become knowledgeable of these regulations and the potential for state survey deficiencies in these facilities if regulations are not being satisfactorily met. Several references have been included that provide information on the responsibilities of attending physicians in LTC facilities.24 –27 Medical directors also have a responsibility to educate attending physicians on the emerging standards of practice that can promote change and clinical practice consistent with geriatric principles appropriately adapted to LTC settings. CLINICAL PRACTICE IN LONG-TERM CARE
AMDA’s Clinical Practice Guidelines (CPGs) are a valuable resource to clinicians on the recognition, assessment, treatment, and monitoring of many specific conditions prevalent in LTC nursing facility populations (Table 10). Individual guidelines can be ordered from AMDA’s web site (www. amda.com). The CPGs entail an interdisciplinary approach to a resident’s nursing care plan and would be useful to attending physicians. The facility medical director should be proactive in obtaining and distributing these CPGs to attending physicians on those medical conditions that are relevant to each facility’s quality assurance and improvement initiatives. Clinicians should not hesitate to contact the nursing facility medical director for advice and guidance. Consideration should be given to the creation of a facility physician advisory committee, chaired by the medical director. This committee can be an effective tool to facilitate and improve communication between attending physicians and the medical director. It can also serve as an educational forum. Such initiatives undertaken by the medical director have a primary goal of promoting continued involvement of community-based physicians in providing care to their patients throughout the LTC continuum.
Table 10. AMDA Clinical Practice Guidelines Altered Mental States (1998) Altered Nutritional Status (2001) Chronic Pain in the Long Term Care Setting (1999) Dehydration and Fluid Maintenance (2001) Dementia (1998) Depression (1996) Pharmacotherapy Companion to Depression (1998) Diabetes (2002) Falls and Fall Risk (1998) Heart Failure (Revised 2002) Guideline Implementation (1998) We Care: Implementing Clinical Practice Guidelines (2003) Osteoporosis (1998) Parkinson’s Disease (2002) Pressure Ulcers (1996) Pressure Ulcer Therapy Companion (1999) Urinary Incontinence (1996)
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CONCLUSION The establishment of effective communication between attending physicians and nursing facilities, residents, and family members is paramount to the provision of high-quality care that is responsive to resident’s needs, values, preferences, and informed decisions. All healthcare providers and the facility medical director are confronted with difficult treatment decisions that must support the attending physician in the provision of excellent care to their residents. This in turn will encourage attending physicians to continue to provide care to their patients as their patients transfer from home or the acute care setting to a LTC facility. REFERENCES 1. Holzman J, Lurie N. Causes of increasing mortality in a nursing home population. J Am Geriatr Soc 1996;44:258 –264. 2. Hanson LC, Henderson M, Rodgman E. Where will we die? A national study of nursing home death. J Am Geriatr Soc 1999;47:S22. 3. SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients. The Study to Understand Progress and Preferences for Outcome, and Risks of Treatments (SUPPORT). JAMA 1995;274:1591–1598. 4. Helman CG. The family culture: A useful concept for family practice. Fam Med 1991;23:376 –381. 5. Levenson SA. Medical Directors in Long-Term Care. A Guidebook for the Future. Durham, NC: Cardena Academic Press; 1993:473. 6. Cantor MD, Pearlman RA. Advance care planning in long-term care facilities. J Am Med Dir Assoc 2003;4:101–107. 7. Fowkes W, Christenson D, McKay D. An analysis of the care of the use of the telephone in the management of patients in skilled nursing facilities. J Am Geriatr Soc 1997;45:67–70. 8. Tangalos EG, Freeman PI, Garness SL. Nursing homes and fax machines [Letter]. JAMA 1990;264:693– 694. 9. Cadogan MP, Franzi C, Osterweil D, et al. Barriers to effective communication in skilled nursing facilities: Differences in perception between nurses and physicians J Am Geriatr Soc 1999;47:71–75.
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10. Cheney KC. Legal Considerations in implementing the HIPAA privacy rules. Long-Term Care Interface 2003;4:37–39, 46. 11. Medical Privacy: National Standards to Protect the Privacy of Personal Health Information. US Department of Health and Human Services. Available at: www.hhs.gov/ocr/hipaa. 12. Cadogan MP, Franzi C, Osterweil D. Utilization of standardized procedures in skilled nursing facilities: The California experience. Annals of Long-Term Care 1998;6:130 –139. 13. Rapp MP, Rapp K, Kyla F. Use of standardized procedures in long-term care. Annals of Long-Term Care 1998;6:147–148. 14. Frank AW. At the Will of the Body. Reflections on Illness. New York: Houghton Mifflin; 1991:6. 15. Lustbader W. Counting on Kindness. The Dilemmas of Dependency. New York: The Free Press; 1991:Preface IX. 16. Levenson SA. Medical Direction in Long-Term Care. A Guidebook for the Future. Durham, NC: Carolina Academic Press; 1993:471– 476. 17. Doherty WJ, Baird MA. Family Therapy and Family Medicine. Towards the Primary Care of Families. New York: The Guilford Press; 1983:13. 18. Doherty WJ, Baird MA. Developmental levels in family-centered medical care. Fam Med 1986;18:153–156. 19. Buckman R, Kason Y. How to Break Bad News. A Guide for Health Care Professionals. Baltimore: The John Hopkins University Press; 1992:181. 20. Lo B, Quill T, Tulsky J. Discussing palliative care with patients. Ann Intern Med 1999;130:744 –749. 21. Kagawa-Singer M, Blackhall LJ. Negotiating cross-cultural issues at the end of life. You got to go where he lives. JAMA 2001;286:2993–3001. 22. Coulehan JL, Platt FW, Egener B, et al. ‘Let me see if I have that right. . .’: Words that help build empathy. Ann Intern Med 2001;135: 221–227. 23. Available at: http://jama.ama-assn.org/issues/v286n23/abs/jel10001.html. 24. Dimant J. Responsibilities of attending physicians in long-term care facilities. J Am Med Dir Assoc 2002;3:254 –258. 25. Ouslander JG, Osterweil D, Marley J. Medical Care in the Nursing Home, 2nd ed. New York: McGraw-Hill Co, Inc; 1997:54 –56. 26. Cutson MT, ed. Long-term care in geriatrics. Clinics in Family Practice 2001;3:505–510. 27. Dimant J. Roles and responsibilities of attending physicians in skilled nursing facilities. J Am Med Dir Assoc 2003;4:231–243.
JAMDA – March/April 2004