Family Communication in Long-Term Care: The Long-Term Care Specialist Perspective

INTRODUCTION

Effective communication is essential in patient care. It is especially important for patients in long-term care (LTC) facilities. Nursing home admission is a time of change in family dynamics, filled with stress, guilt, anger, exhaustion, financial burdens, mistrust, and confusion. The family has less control over many aspects of their loved ones’ care. There is potential for major failure in communication between the new caregivers and the family. Minimizing such a communication gap will result in improved patient and family satisfaction. The onus is on the facility to prove to the family that they have the best interest of the loved one in mind. The decision-making authority of patients and their families has increased over the last three decades. Informed consents are frequently required for therapies, treatments, and overall care of the patients. The establishment of effective communication between nursing home physicians (“LTCists”), nursing facilities, hospitals, and residents and their families is paramount to the provision of high-quality care that is responsive to residents’ needs, values, and preferences, and enables them to make informed decisions.¹

COMMUNICATION

Patients and their families encounter a wide variety of new people on arrival in the LTC facility, so effective communication between physician, facility, and hospital is essential to ensure a successful transition. Some important topics to review when care must be taken in communicating with patients and their families are shown in Table I.

Acute Care Hospital Physician
In the majority of instances, patients are referred to LTC facilities from acute care hospitals. In the multi-specialty setting of these hospitals, the consultants are often involved in the management of a specific organ system. Family members most often do not get the whole picture of the status of the patient. Not infrequently, they have the unrealistic impression that their loved one will improve enough to quickly return home. In some instances, patients are transferred to LTC facilities with incomplete transfer orders. Some examples where clear-cut orders are not transmitted include duration of antibiotics, continuation of subcutaneous heparin or warfarin, wound care, and necessity for bladder catheter. The situation becomes more confounded during weekends and after hours.

Nursing Home Administrative Services
At the very outset, families should be made aware of the specific policies of the LTC facility (eg, no restraints, no dietary restrictions). Facilities should not accept patients if their staff are not capable of providing appropriate care for them (eg, patients with tracheostomy, gastrostomy tube, intravenous drugs, wandering, young mental retardation, or psychiatric needs). If planning occurs prior to the admission, an enormous amount of time and effort can be saved by avoiding frustration from the patients’ families.

Nursing Services
Nurses and certified nurse assistants constitute the primary interface between the family members and the patient in a LTC facility. They are responsible for relaying daily updates about patients to their families. This information needs to be plain and accurate, and delivered in a professional and compassionate fashion. Confusion leading to suspicion often arises regarding grooming, cleaning, and bathing residents, especially if different caregivers (eg, those for hospice patients) are involved. Sometimes, accusations stem from untimely reporting of test results and medication changes to the family. Inappropriate explanations regarding bedrails, low beds, and restraints may lead to great dissatisfaction. Serious consequences may result from delay in contacting family members in situations like refusal of medication, refusal of food, falls and injuries, wandering, development of pressure ulcers or lower extremity ulcers, and change in condition.

Rehabilitation Services
Overzealous comments of some therapists may fuel unrealistic family expectations. Delay in reporting lack of progression or worsening of functional status may bring serious blame on the facility. Sometimes “discharge” from one discipline of therapy is understood by the patient or family to mean discharge from the facility.

Social Services
Misunderstanding family dynamics may give rise to difficult situations with nursing home patients. Description of “code” status may vary between facilities, leading to confusion related to initiating cardiopulmonary resuscitation and transferring the patient to the hospital. Decisions regarding gastrostomy tube feeding, intravenous fluid, blood transfusion, chemotherapy, and dialysis are often unclear. In some circumstances, families are reluctant to communicate plans for funeral arrangements. Exploration of spiritual needs and appropriate referral for the patient, if needed, should be provided.

Activity Services
Inaction or delay on the part of the facility in taking action to solve problems brought up at meetings in which residents participate may worsen patient and family concerns. Written permission from the family is advised for situations involving residents, such as taking photographs of them or permitting them to travel outside the facility.

Dietary Services
Complaints related to food are very common. Miscommunication between nursing and dietary could result in serving food of inappropriate type and consistency to the patient.

Pharmacy Services
Since most elderly LTC residents are on multiple medications, there is often a substantial monthly cost for the pharmacy services. If families are not made aware of medication changes, especially psychiatric medication, then a detailed explanation may be warranted at the end of the month to pacify an unhappy family.

Nursing Home Physician Services
Physician LTCists, as elsewhere, must learn to communicate in ways that establish therapeutic relationships and support successful interventions. For several reasons, there is palpable mistrust in the general population of LTC facilities. Family members of patients sometimes conclude that their loved one is not receiving optimal care. Clarifying confusions, setting treatment goals, and addressing concerns of the family members at the first patient encounter will help prevent disputes and conflicts in the future. Tailoring medical advice to the unique needs, concerns, and feelings of the patient and family will establish a friendly relationship. Prior discussions with the responsible party allow the physician to readdress the goals of care should the situation continue to worsen. Direct communication from the physician on changes with serious consequences would help to increase the confidence of family members in the LTC facility.

DISCUSSION

Effective, empathetic communication is the foundation of excellent patient care.² It promotes the understanding of the patient’s illness and the “person” who is experiencing illness. In health care settings, the goal of any provider–patient interaction is establishing and maintaining effective working relationships that promote healing and mutual trust.³ Because of the complex nature of the care of nursing home residents and the overlay of emotions that families often bring, the long-term care setting is one of the most challenging of health care settings in which to create true dialogue between all involved parties.⁴ Poor communication contributes to suffering because it exacerbates the patient’s and the family’s sense of isolation, helplessness, and anxiety.

The responsible parties of patients should be notified of problems before they notice them. The LTCist plays a crucial role in dispelling uncomfortable feelings about LTC facilities. He or She is important in transmitting medical information (sharing bad news) and engaging in therapeutic dialogue to explore the patient’s and family’s feelings and deepest concerns. Misconceptions about prognosis are often seeded in acute care settings. When resident and family expectations for recovery from progressive disease are unrealistic, intense displays of grief and anger could be directed toward the physician by the resident and family members.¹ It is prudent for the LTCist to put everything in perspective and predict a more reasonable outcome at the very outset. Table II provides some strategies for effective communication with families.

The ability to communicate compassionately is particularly important in the LTC setting because the patients are often frail, frightened, and vulnerable. When making treatment decisions, physicians require information and guidance to develop a treatment plan that respects patients’ wishes. Likewise, patients need information from physicians to understand their diagnosis and prognosis, to anticipate the likely effects of the illness on their future plans, and to participate in developing a treatment plan that reflects their personal values. In addition to scientific competence, physicians must demonstrate competence in listening to a patient’s life stories and understanding and honoring their meanings. When patients are terminally ill, patients and their family members look to physicians not only for knowledge and technical skill, but also for guidance, reassurance, hope, meaning, and compassionate understanding. Direct physician contact with patients and their families is necessary, particularly when catastrophic illness and/or death challenges a family system.⁵ Many patients want their spiritual needs to be addressed by their physician directly or by referral to a pastoral professional.^6-8 The LTCist is in a unique position to provide solace to patients and their families in the long-term care setting.