TR AN SITION S Issues in palliative and end-of-life care
Let’s talk about it: Arranging a family conference By Harleah G. Buck, PhD, RN, CHPN, and Beth Fahlberg, PhD, MN, BS, RN
“HANK,” 90, HAD BEEN hospitalized with end-stage heart failure and dementia. He had three adult children and many grandchildren who were involved in his life. Several family members were healthcare providers. During this hospitalization, Hank experienced respiratory distress refractory to medical treatment. Everyone could see that Hank wasn’t doing well. After discussing his condition with his healthcare provider, his daughter asked for do-not-resuscitate (DNR) status. A few days later, a grandchild who was a physician came to visit. He wasn’t convinced that everything had been done to treat his grandfather. He told the attending physician that he wanted the DNR order reversed
and that another treatment option should be tried. Other family members, who’d begun to accept the idea of Hank’s death, weren’t convinced that more treatment was the best option and became distraught when they saw how he continued to suffer. Several days later, the “last ditch” treatment option was abandoned, and Hank was made DNR again. He was transferred to a long-term care facility, where he died a few days later. In past columns, we’ve discussed the importance of communication in end of life. But we haven’t talked about a specific type of communication used in the acute and long-term care setting—the family conference. In Hank’s case, a family conference may have reduced the amount of
What’s needed for a family conference? 2 1. Develop goals for the family conference before the meeting. 2. Arrange for a private, inviting room. 3. Make sure that all stakeholders are in the room: patients, if they’re able; family members, including legally appointed decision-maker(s); healthcare professionals; and psychosocial/spiritual support provider(s). 4. Ask attendees to introduce themselves and make interpersonal connections. Identify the purpose of the meeting and discuss the format and ground rules. For example, each attendee will have the opportunity to express his or her views. Attendees will be asked to speak one at a time without interrupting one another. 5. Assess patient/family knowledge of the current situation. 6. Provide a picture of the current medical situation, including information about prognosis and options for treatment. Answer patient/family questions. 7. Ask the patient (or family, if the patient can’t participate) about the options they’re considering. Ask about their concerns and provide additional information as needed. Provide privacy if the patient and family want to discuss their options by themselves. 8. If the patient/family can’t agree on a plan, allow time for more discussion, provide other resources (such as spiritual support, ethics committee, or second opinion), or arrange for a follow-up meeting. 9. Finish the meeting by summarizing what was agreed upon, what was not, the decisions that were made, and plans for moving forward. Document these details in the medical record.
14 l Nursing2014 l January
anguish that both he and his family experienced. Let’s explore how it works and why it can help terminally ill patients and their families. A meeting and more At its simplest, the family conference is a meeting between healthcare professionals and the patient and/or family. The topic is generally related to the current course of the patient’s disease and the need for a consensus on goals and the plan of care. Many times a family conference is held because of unrealistic or multiple, divergent goals. Communication in this situation is difficult for several reasons. Families may not have communicated well in the past, and clinicians may not have a clear idea of potential patient outcomes. The family conference is a pivotal time for clinicians, patient, and family to address treatment options and patient/family preferences. So what part do you as a nurse play in bringing together the families, who know the patient best, and the healthcare team, who know the disease and the healthcare system best? Isn’t this the healthcare provider’s job? As reported in an interesting journal article, an interprofessional group of nurses, physicians, and social workers discussed the key role that nurses play in family conferences.1 While this group targeted ICU, nothing that they present is specific to that care setting. All nurses in any care setting can contribute to family conferences in meaningful ways. The article’s authors believe that nurses contribute four important www.Nursing2014.com
Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
elements to an effective family conference: information, communication, continuity, and relationship. • Nurses generally have information about the patient’s values and preferences. Nurses also have a unique perspective on the situation because we see and hear many interactions between the patient and family and all of the disciplines and providers involved in the patient’s care. • Nurses are good at promoting communication because we possess the ability to be bilingual: we can speak both “medical” and “patient.” This makes us good at translating between the patient/family and the healthcare team. • Nurses provide continuity in a healthcare setting because one of us is always there to promote continuity in care, communication, and support. • Finally, because of our holistic models of care and constant presence, we’re effective at developing trust relationships with patients and their families and creating a safe place for them to express their wishes. Family update Fast forward a decade. Hank’s 75-year-old son Bob is now the one in the hospital bed. Like Hank, he’s dying from end-stage heart failure and can’t make decisions for himself. But this time, the circumstances are different. His daughter, who has power of attorney for healthcare, has been discussing her father’s wishes with him and other family members for the past few years, as soon as his deteriorating health was obvious to all. During this hospitalization, she’s been asking the healthcare provider about getting her dad on hospice, but she’s frustrated that nothing has happened yet. However, the nurse managing his care has stepped in to advocate for them and talks with the team about holding a family meeting. As soon as the nurse gets the go-ahead, the family conference is arranged. At this meeting, the medical team discusses Bob’s prognosis and treatment options while the palliative care team presents the option of hospice with strong symptom management and ongoing support. The family agrees on hospice care and he’s soon discharged home. His nurse ensures that outpatient hospice care is arranged. Several months later, when Bob can no longer be managed at home, he’s admitted to the inpatient hospice center where his signs and symptoms are treated and his family is supported. A few days later, his family members gather to say goodbye. He dies later that night in his daughter’s arms. Step up and step in Now that we’ve seen the difference that family conferences can make and the important contributions nurses www.Nursing2014.com
make to these meetings, what would you do if you were asked to arrange a family conference? What are some of the steps necessary to facilitate this? The End of Life/ Palliative Education Resource Center provides a Fast Facts sheet on arranging for and moderating a family conference. For information, visit http://www.eperc.mcw.edu/ EPERC/FastFactsIndex/ff_016.htm. For more tips, see What’s needed for a family conference? ■ REFERENCES 1. Nelson JE, Cortez TB, Curtis JR, et al. Integrating Palliative Care in the ICU: The Nurse in a Leading Role. J Hosp Palliat Nurs. 2011;13(2):89-94. 2. Ambuel B, Weissman DE. Moderating an end-of-life family conference. 2d ed. Fast Facts and Concepts; 2005. http://www.eperc.mcw.edu/EPERC/FastFacts Index/ff_016.htm. Harleah G. Buck, a board-certified hospice and palliative care nurse, is currently an assistant professor at the School of Nursing, Pennsylvania State University, University Park, Pa. She was formerly a nurse at The Hospice of the Florida Suncoast in Largo, Fla. Beth Fahlberg is a clinical associate professor at the University of Wisconsin-Madison School of Nursing. The authors have disclosed that they have no financial relationships related to this article. DOI-10.1097/01.NURSE.0000438721.81334.f7
Get “In Touch” with Nursing’s Editor-in-Chief Linda Laskowski-Jones, MS, RN, ACNS-BC, CEN, FAWM
Read Linda’s thought-provoking blog and share your opinions on hot topics in nursing. Join the discussion at www.Nursing2014.com – just click on the “Featured Blog” box on the right.
January l Nursing2014 l 15
Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
Let’s talk about it: Arranging a family conference By Harleah G. Buck, PhD, RN, CHPN, and Beth Fahlberg, PhD, MN, BS, RN
“HANK,” 90, HAD BEEN hospitalized with end-stage heart failure and dementia. He had three adult children and many grandchildren who were involved in his life. Several family members were healthcare providers. During this hospitalization, Hank experienced respiratory distress refractory to medical treatment. Everyone could see that Hank wasn’t doing well. After discussing his condition with his healthcare provider, his daughter asked for do-not-resuscitate (DNR) status. A few days later, a grandchild who was a physician came to visit. He wasn’t convinced that everything had been done to treat his grandfather. He told the attending physician that he wanted the DNR order reversed
and that another treatment option should be tried. Other family members, who’d begun to accept the idea of Hank’s death, weren’t convinced that more treatment was the best option and became distraught when they saw how he continued to suffer. Several days later, the “last ditch” treatment option was abandoned, and Hank was made DNR again. He was transferred to a long-term care facility, where he died a few days later. In past columns, we’ve discussed the importance of communication in end of life. But we haven’t talked about a specific type of communication used in the acute and long-term care setting—the family conference. In Hank’s case, a family conference may have reduced the amount of
What’s needed for a family conference? 2 1. Develop goals for the family conference before the meeting. 2. Arrange for a private, inviting room. 3. Make sure that all stakeholders are in the room: patients, if they’re able; family members, including legally appointed decision-maker(s); healthcare professionals; and psychosocial/spiritual support provider(s). 4. Ask attendees to introduce themselves and make interpersonal connections. Identify the purpose of the meeting and discuss the format and ground rules. For example, each attendee will have the opportunity to express his or her views. Attendees will be asked to speak one at a time without interrupting one another. 5. Assess patient/family knowledge of the current situation. 6. Provide a picture of the current medical situation, including information about prognosis and options for treatment. Answer patient/family questions. 7. Ask the patient (or family, if the patient can’t participate) about the options they’re considering. Ask about their concerns and provide additional information as needed. Provide privacy if the patient and family want to discuss their options by themselves. 8. If the patient/family can’t agree on a plan, allow time for more discussion, provide other resources (such as spiritual support, ethics committee, or second opinion), or arrange for a follow-up meeting. 9. Finish the meeting by summarizing what was agreed upon, what was not, the decisions that were made, and plans for moving forward. Document these details in the medical record.
14 l Nursing2014 l January
anguish that both he and his family experienced. Let’s explore how it works and why it can help terminally ill patients and their families. A meeting and more At its simplest, the family conference is a meeting between healthcare professionals and the patient and/or family. The topic is generally related to the current course of the patient’s disease and the need for a consensus on goals and the plan of care. Many times a family conference is held because of unrealistic or multiple, divergent goals. Communication in this situation is difficult for several reasons. Families may not have communicated well in the past, and clinicians may not have a clear idea of potential patient outcomes. The family conference is a pivotal time for clinicians, patient, and family to address treatment options and patient/family preferences. So what part do you as a nurse play in bringing together the families, who know the patient best, and the healthcare team, who know the disease and the healthcare system best? Isn’t this the healthcare provider’s job? As reported in an interesting journal article, an interprofessional group of nurses, physicians, and social workers discussed the key role that nurses play in family conferences.1 While this group targeted ICU, nothing that they present is specific to that care setting. All nurses in any care setting can contribute to family conferences in meaningful ways. The article’s authors believe that nurses contribute four important www.Nursing2014.com
Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
elements to an effective family conference: information, communication, continuity, and relationship. • Nurses generally have information about the patient’s values and preferences. Nurses also have a unique perspective on the situation because we see and hear many interactions between the patient and family and all of the disciplines and providers involved in the patient’s care. • Nurses are good at promoting communication because we possess the ability to be bilingual: we can speak both “medical” and “patient.” This makes us good at translating between the patient/family and the healthcare team. • Nurses provide continuity in a healthcare setting because one of us is always there to promote continuity in care, communication, and support. • Finally, because of our holistic models of care and constant presence, we’re effective at developing trust relationships with patients and their families and creating a safe place for them to express their wishes. Family update Fast forward a decade. Hank’s 75-year-old son Bob is now the one in the hospital bed. Like Hank, he’s dying from end-stage heart failure and can’t make decisions for himself. But this time, the circumstances are different. His daughter, who has power of attorney for healthcare, has been discussing her father’s wishes with him and other family members for the past few years, as soon as his deteriorating health was obvious to all. During this hospitalization, she’s been asking the healthcare provider about getting her dad on hospice, but she’s frustrated that nothing has happened yet. However, the nurse managing his care has stepped in to advocate for them and talks with the team about holding a family meeting. As soon as the nurse gets the go-ahead, the family conference is arranged. At this meeting, the medical team discusses Bob’s prognosis and treatment options while the palliative care team presents the option of hospice with strong symptom management and ongoing support. The family agrees on hospice care and he’s soon discharged home. His nurse ensures that outpatient hospice care is arranged. Several months later, when Bob can no longer be managed at home, he’s admitted to the inpatient hospice center where his signs and symptoms are treated and his family is supported. A few days later, his family members gather to say goodbye. He dies later that night in his daughter’s arms. Step up and step in Now that we’ve seen the difference that family conferences can make and the important contributions nurses www.Nursing2014.com
make to these meetings, what would you do if you were asked to arrange a family conference? What are some of the steps necessary to facilitate this? The End of Life/ Palliative Education Resource Center provides a Fast Facts sheet on arranging for and moderating a family conference. For information, visit http://www.eperc.mcw.edu/ EPERC/FastFactsIndex/ff_016.htm. For more tips, see What’s needed for a family conference? ■ REFERENCES 1. Nelson JE, Cortez TB, Curtis JR, et al. Integrating Palliative Care in the ICU: The Nurse in a Leading Role. J Hosp Palliat Nurs. 2011;13(2):89-94. 2. Ambuel B, Weissman DE. Moderating an end-of-life family conference. 2d ed. Fast Facts and Concepts; 2005. http://www.eperc.mcw.edu/EPERC/FastFacts Index/ff_016.htm. Harleah G. Buck, a board-certified hospice and palliative care nurse, is currently an assistant professor at the School of Nursing, Pennsylvania State University, University Park, Pa. She was formerly a nurse at The Hospice of the Florida Suncoast in Largo, Fla. Beth Fahlberg is a clinical associate professor at the University of Wisconsin-Madison School of Nursing. The authors have disclosed that they have no financial relationships related to this article. DOI-10.1097/01.NURSE.0000438721.81334.f7
Get “In Touch” with Nursing’s Editor-in-Chief Linda Laskowski-Jones, MS, RN, ACNS-BC, CEN, FAWM
Read Linda’s thought-provoking blog and share your opinions on hot topics in nursing. Join the discussion at www.Nursing2014.com – just click on the “Featured Blog” box on the right.
January l Nursing2014 l 15
Copyright © 2014 Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
