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Care coordination at end of life

The nurse's role

Ferguson, Rita PhD, RN, CHPN, CNE

doi: 10.1097/01.NURSE.0000527610.70581.fa
Department: TRANSITIONS: Issues in palliative and end-of-life care

Rita Ferguson is a clinical assistant professor at the University of Alabama in Huntsville College of Nursing, and was formerly director of nursing at the Hospice of Limestone County in Athens, Ala.

The author has disclosed no financial relationships related to this article.

AN EXPECTATION of nursing practice is providing patient-centered care, which recognizes the patient or designated representative as a partner in the coordination of care based on the patient's wishes.1 Competently providing patient-centered care at end of life is complicated by many variables, such as involvement of multiple healthcare providers each focused on separate body or organ systems; communication difficulties between patients, caregivers, and providers about end of life decisions; and confusion about the meaning of terminology such as terminally ill, palliative care, and hospice.

Care coordination is the organization of patient-care events. It involves all personnel involved with a patient's plan of care to accomplish safe and effective outcomes.2

A coordinated approach to patient care supports patient-centered care as the patient transitions between different settings.2 Using a case study as an example, this article introduces care coordination of the older adult during end of life and discusses how it supports patient-centered nursing care.

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Case study

Mr. L, 80, has a 25-year history of heart failure (HF). His disease has been successfully managed with lifestyle modifications, pharmacotherapy, permanent cardiac pacing, and an implantable cardioverter-defibrillator with occasional hospitalizations for worsening HF.

During the past 2 months, Mr. L and his wife have noticed functional decline with greatly increased fatigue. During the latest hospital admission, Mr. L's cardiologist informed Mr. L and his wife that he'd progressed to Stage D (end-stage) HF with a limited life expectancy. However, neither Mr. L nor his wife was engaged in discharge planning from the acute care setting back to home.

Until now, Mr. L had been relatively independent and able to care for himself, with his wife's assistance. But Mrs. L, who is 78, is physically unable to provide the level of assistance with mobility and personal hygiene that her husband now needs. She doesn't know the questions to ask or what care might be needed as Mr. L's functional decline progresses. The phone number for a home healthcare agency was included in the patient's discharge instructions, but no appointment was made before Mr. L was discharged.

Mrs. L was advised at discharge to call 911 if her husband experienced respiratory distress. However, Mr. L stated adamantly that he doesn't want to return to the hospital for any reason.

In this case, Mrs. L was aware of the patient's decline and knew that he didn't want to be hospitalized again, but communication about care coordination and transition to other care resources didn't occur. The patient was discharged without being assessed regarding his needs and goals, and his spouse wasn't adequately prepared to manage the patient's needs. Could care coordination have improved the outcome for Mr. L and his wife by facilitating a transition to palliative care?

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Comprehensive and compassionate

Palliative care is the comprehensive and compassionate practice of alleviating suffering from physical, psychosocial, spiritual, and existential symptoms for patients whose illness isn't curable and for their significant others.3 Mr. L and his wife understood that his HF wasn't curable and that his medical status was rapidly declining. Communication about palliative care that leads to end-of-life care could have given the patient and his wife an opportunity to discuss his wishes and healthcare goals. This is essential for providing patient-centered care as the patient's health declines.

Care coordination supports patients during transitions between different settings.2 Older adults who are experiencing end-of-life concerns are at increased risk for poor outcomes during transitions for various reasons, such as inadequate communication between healthcare providers and settings, and limited patient education.4 If the patient's wishes aren't included in the plan of care, patient-centered care is lacking. By knowing the patient's desires, the nurse can advocate for the patient and inform other members of the healthcare team. Bridging the communication gap between patients, families, and members of the healthcare team is a key nursing role.

Kelley, Docherty, and Brandon described nurses as “knowing the patient” when they incorporate clinical and personal patient information into the care of a vulnerable patient population with multiple complex healthcare needs, such as older adults.5 Personal information includes understanding the patient's and family members' desires during the difficult time at the end of life.

Because of complex emotions associated with end of life, communication may be uncomfortable for all involved. Mr. L and his wife are anticipating loss and grief. They may also be in a state of denial.

The clinical nurse spends a considerable amount of time with patients like Mr. L and their families, providing many opportunities to learn about the patient as a person. The nurse is in a position to recognize the complexity of end-of-life care needs and initiate patient-centered care coordination based on interprofessional teamwork. Nurses have the education, experience, and training to lead in this effort. The roles of communicator and care coordinator are fundamental responsibilities of the professional nurse.6



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Take a coordinated approach

What if the previous case study had included the clinical nurse's assessment of the person as well as the patient? If Mr. L's nurse knew the patient didn't want to return to the hospital, what could have been done differently? The nurse caring for Mr. L would have assessed his functional ability and gathered data that support his functional decline, as noted by his inability to climb steps to reach his bedroom. The nurse would also have questioned Mr. L during the assessment about his wishes related to this hospitalization. When Mr. L responds that he doesn't want to suffer, wants to be at home, and wants to remain in charge of his life, the nurse consults with the nurse care coordinator to help Mr. L achieve these goals in concert with the cardiologist and other healthcare team members. In this example of patient-centered care, the patient is included in the plan from the beginning and can inform the team regarding his personal choices.

In this alternate scenario, Mr. L is discharged from the hospital to home and care is coordinated with the hospice agency. Mr. L achieves his goals of no suffering, remaining at home, and dictating what and how his care will be provided because the nurse recognized the patient's personal goals and integrated care coordination into the planning process.

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Part of everyday nursing practice

Nurses perform care coordination as part of their daily practice.7 Routine care coordination activities include risk assessment and identification of patients at risk for poor outcomes or readmission, accurate communication of the patient's needs and preferences, putting the plan of care into action, evaluating outcomes, and assisting with care transition as the patient moves across care settings.7

Assessment goes beyond simply inquiring if advance directives or a living will has been provided; it also encompasses evaluating the patient's functional abilities, cognitive status, and social support (see Care coordination checklist). As key members of the healthcare team, nurses can support patients during care transitions by knowing patient and family goals, sharing this knowledge with the team, and working with other team members to marshal resources needed to support patient goals. The nurse who practices care coordination is providing patient-centered care.

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1. Cronenwett L, Sherwood G, Barnsteiner J, et al Quality and safety education for nurses. Nurs Outlook. 2007;55(3):122–131.

2. Lamb G. Care coordination, quality, and nursing. In: Lamb G, ed. Care Coordination: The Game Changer. Silver Spring, MD: American Nurses Association; 2013:1–10.

3. National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care. 3rd ed. 2013.

4. Enderlin CA, McLeskey N, Rooker JL, et al Review of current conceptual models and frameworks to guide transitions of care in older adults. Geriatr Nurs. 2013;34(1):47–52.

5. Kelley T, Docherty S, Brandon D. Information needed to support knowing the patient. ANS Adv Nurs Sci. 2013;36(4):351–363.

6. Forbes TH 3rd. Making the case for the nurse as the leader of care coordination. Nurs Forum. 2014;49(3):167–170.

7. Lamb G, Schmitt M, Sharp D. Recognizing care coordination in nurses' practice. In: Lamb G, ed. Care Coordination: The Game Changer. Silver Spring, MD: American Nurses Association; 2013:81–96.

8. Wittenberg-Lyles E, Goldsmith J, Ferrell B, Ragan SL. Communication in Palliative Nursing. New York, NY: Oxford University Press; 2013.

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Cipriano P. The imperative for patient-, family-, and population-centered interprofessional approaches to care coordination and transitional care: a policy brief by the American Academy of Nursing's Care Coordination Task Force. Nurs Outlook. 2012;60(5):330–333.

Erickson J. Bedside nurse involvement in end-of-life decision making: A brief review of the literature. Dimens Crit Care Nurs. 2013;32(2):65–68.

Westphal EC, Alkema G, Seidel R, Chernof B. How to get better care with lower costs? See the person, not the patient. J Am Geriatr Soc. 2016;64(1):19–21.

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