Integrating care when the end is near: ethical dilemmas in end-of-life care.
Keywords: end of life, family-oriented care, collaborative, bad news, ethical dilemmas
In recent decades, much emphasis has been given to improving the process of "delivering bad news" by physicians (Buckman, 1992; Fallow-field & Jenkins, 2004; Quill, Arnold, & Platt, 2001; Quill & Townsend, 1991) and thinking about how to best engage families during these difficult times (Fineberg, 2011; King & Quill, 2006). Other than addressing issues related to patients desiring to hasten their deaths (Werth, 2002) or the circumstances of acute trauma, little is written about the role for behavioral health consultants (BHCs) in actively participating in end-of-life or "bad news" conversations. These members of the health care team can be the ones who spend time with patients and families, unpacking the effects of the bad news delivered by a physician colleague.
BHCs may struggle with a range of challenges in this context. Sometimes, BHCs know specific diagnostic or prognostic information before patients because of their access to medical records or team collaboration. BHCs routinely sit with patients and families in the uncertainty of their illness, balancing the hope for a treatable outcome and the fear of more bad news. At times, BHCs find themselves amid the tension between patient, family, or provider requests for more tests or treatments and "giving up too soon." Tensions also exist between traditional behavioral health privileging "patient privacy" and models for integrated health care that rely on information sharing for assessment and coordinated care planning for the mutual benefit of patients. Emphasizing "informed consent" for patients and their family members for this integrated care is critical; often, it is a process that evolves with changing medical information and prognosis, as well as adding family members or other treating providers. Navigating personal values, professional interdisciplinary roles, cultural differences, and team dynamics can exacerbate the dilemmas.
Clinical care of patients and families during end-of-life moments is best provided by an integrated and collaborative team. Interdisciplinary team dynamics in the care of dying patients and their families are getting increased attention in the literature (Baggs, Norton, Schmitt, & Sellers, 2004; Connor, Egan, Kwilosz, Larson, & Reese, 2002). Challenges may arise when there are discrepant goals between team members, interpersonal issues, or conflicts with patients or their family members about the care plan. Although not always charged with the explicit responsibility, BHCs bring a skill set for facilitating team interactions, attending to group process, as well as making space for the patient or family voice in the care, often with more time available for these roles.
This article describes a BHC's efforts to care for a woman, her husband, and two children during a rapid decline in her health and the months following her death. Several aspects of caring for this woman and her family at a critical time provoked questions about the BHC's role in the interdisciplinary team, scope of practice, information sharing, and patient autonomy in the context of providing care at the end of life. We explore the relevant existing codes of ethics and professional conduct for professionals practicing in integrated care settings, and also identify gaps in these codes as they pertain to the ethical dilemmas just described. Lastly, we offer some recommendations for providing patient- and family centered end-of-life care that may address those gaps, including some discussion of additional important considerations for how we communicate and care for ourselves.
Dr. Stevens referred Sheila, a 28-year-old African American married mother of two, for a behavioral health consultation concerning diabetes management and depression. Well educated, sarcastic, clever, and thoughtful, she worked full time as an engineer and project manager, enjoyed a satisfying social life, and applied herself successfully to managing her health. She was newly reconnected with health care after a long hiatus, sometime during which she noticed frequent headaches, gained a fair amount of weight, and developed diabetes that had already begun to show itself through a number of complications. Sheila had recently reported frustration with feeling "sick" and mild symptoms of depression.
Within a couple of months of treatment, Sheila's diabetes was stable, her headaches better controlled, and her weight was starting to come down. Although her labs improved, Sheila began to experience fatigue and she did not understand why. Was it the flu? Depression? Something new? She faithfully kept logs and made and kept appointments with Dr. Stevens and the BHC. Then she began to experience muscle weakness and falling. Rheumatological? Auto-immune? Neurological? She pursued consults with just about every specialty imaginable, and all of us were stumped. Prednisone made her swell up like a balloon, and it left her feeling awful.
Sheila worked with the BHC for help with coping strategically during this confusing and frustrating time. She began working from home and planned social evenings at home as opposed to going out. She tagged along for outings with her children and husband even though she was unable to participate actively. Web chats replaced long walks with friends.
Her husband, Jonathan, called the BHC one day and said how much of a struggle this all was for him, and for their children, despite their attempts to keep routines as "normal" as possible. The BHC invited him to come with Sheila to the next visit to share his concerns with her and Sheila's physician. Jonathan said he thought Sheila needed more help. She disagreed. He thought she needed visiting nursing services. She disagreed. He called the BHC again to see if she could "help Sheila see that she really needed more help than [he] could provide." He questioned the BHC about what was really happening with Sheila's health, what the doctors were thinking, and what her prognosis was. "She won't say," he said tearfully, "but I'm sure you could offer some perspective, right?" Jonathan shared that his mother had died unexpectedly in the hospital 30 years ago under what he termed "mysterious circumstances" and that his father still mistrusted "White doctors" because he felt they gave up too soon on his mother. The BHC acknowledged his worry and concern, and invited him again to the next joint visit.
Weekly visits marked a steady decline in Sheila's functioning. She refused to use a cane, but as she developed dyspnea upon exertion, she came to the next BHC appointment with a walker, decorated to reflect her flair for style. Electromyelograms, blood cultures, antibody testing--Sheila found no answers and her functioning continued to decline, quickly pushing her to take disability leave from work. She was getting worse by the week; the uncertainty she had about her body's capabilities prompted her to order groceries to be delivered to her home rather than venture out. She eventually acquiesced to visiting nurse services. She was frightened and confused, and so were her providers. She could not understand why this was happening to her, especially after she turned her whole lifestyle around. Sheila told the BHC several times over the course of the 6 months of consultation visits that she felt like she was being "punished" for starting to take care of herself. As she became more resigned, her husband demanded more consults and methodically tracked changes in her numbers. The specialists continued to develop new plans and new treatments as her condition worsened.
Sheila was fiercely independent and proud, and she asked the BHC for help when her family asked her to enter a nursing facility. She knew a nursing facility could provide an environment with more safety and more care, but she struggled against it. She had several hospitalizations and an ICU admission and then another. She missed primary care appointments because she was being worked up or observed overnight or intubated. Sheila told the BHC that she knew she was likely dying but that she was not going to tell her husband. The BHC followed the story, play by play, in Sheila's medical record as lab results came in, as specialist consult notes framed new but unhopeful hypotheses, and in team meetings aimed at sorting out how to provide comfort to her as interventions failed. Jonathan remained hopeful with each new diagnosis, each new treatment, and each new plan. It was exhausting and sad; the BHC felt increasingly worried about Sheila and her family, often staying late in clinic to read through articles about her possible diagnoses, thumbing through differentials, and imagining what Sheila's husband and children must be living through. Sometimes images of Sheila in her frailty made it hard for the BHC to sleep. The story hit too close to home; the BHC recalled a similarly confusing and upsetting process with her grandmother some years back, and her family had never fully recovered. A brief series of consultations with a colleague helped the BHC right-size her investment and energy spent on working with this family, separate her own family story from Sheila's, and allowed her to be present to Sheila and her family's needs more effectively.
The BHC struggled with a variety of questions weeks later when she stood with Jonathan beside Sheila's hospital bed to plan for the nursing home transition: "How do I advocate for my patient's autonomy and help her maintain her dignity even if we all know she is struggling to manage her daily routine?"; "Do I tell her that I share the same concerns for her safety even though it seems paternalistic?"; "Do I tell her husband that this young woman longingly made comments about wanting to be with a beloved grandfather who'd died several years prior?"; "How do I best respond to her husband's concerns that the health care team has given up on her?" The BHC was balancing Sheila's dignity and her safety, her individual goals, and her family's worries.
The BHC also struggled with defining the boundaries of her professional responsibility to Sheila: "What was my role when visiting her inpatient, given that I didn't have a professional appointment at the hospital?"; "How should I interact with the hospital team who were far less familiar than her primary care providers?"; "How did my role change the two times I went to her home to meet with her and her family when she was unable to come in?" The nature of the visits changed as they soon occurred in the noisy context of the ICU and then the cold sterility of a nursing home. The BHC went to offer comfort and a familiar face and to see if she was "okay." In the hospital, the BHC sat on her bed because there was nowhere else to sit, and they chatted about lots of nothings-in-particular. In her home, she sat on the living room floor and played with Sheila's kids while she talked in generalities with Sheila and Jonathan. Charting these unconventional visits provided information for the primary care treatment team and helped the team to respond to turbulent encounters fueled by Sheila and Jonathan's fears.
Sheila died of respiratory failure in our hospital's intensive care unit, with her husband at her side, when support measures were withdrawn. Weeks prior, Sheila and Jonathan together had come to the difficult decision to stop treatment when it became clear that recovery was impossible. The BHC's last visit with Jonathan was in the funeral home after Sheila died. She hugged him and his two children and said, "I'm just so sorry ... I can't believe this is happening."
Two months after Sheila's death, the BHC saw Sheila's children again when they came with their father for school physicals. The family medicine resident who conducted the visits was unaware of the BHC's prior involvement with Sheila and decided to make a referral to the BHC for the children: "These two children are refusing to get on the bus to go to school and the dad is at his wit's end. I wonder whether they might have anxiety, or maybe the dad needs some coaching?" The BHC explained the family's history and framed their school refusal as being linked to their sense of vulnerability and fear of separation from their father. The BHC, without thinking twice, called the father to set up an appointment to see him and the children, to offer support to a now-single father raising two children who looked an awful lot like their mother.
Relevant Professional Ethical Guidance
Several ethical dilemmas challenged the BHC in this example, particularly those principally related to patient autonomy, scope of practice, multiple relationships and confidentiality, as well as record keeping in the context of family-oriented integrated care. Each will be discussed in turn and in the context of the written ethical guidelines for psychologists, social workers, family therapists, and physicians.
A primary goal of ethical care at the end of life is assuring that patients experience autonomous informed decision making. All four codes of ethics from the American Medical Association (2012; AMA), the American Psychological Association (2010; APA), the American Association for Marriage and Family Therapy (2001; AAMFT), and the National Association of Social Workers (2008; NASW) include clear guidance privileging patient autonomy. For example, Principle E of the APA Code of Ethics centers on respect for people's rights and dignity, stating that psychologists respect the dignity and worth of all people, and the rights of individuals to privacy, confidentiality, and self-determination. In Opinion 10.01 on the patient-physician relationship, the AMA states that the patient has the right to make decisions regarding the health care that is recommended by his or her physician. Accordingly, patients may accept or refuse any recommended medical treatment. In addition to upholding patient's dignity and relieving suffering, BHCs join their health care colleagues in ensuring that patients receive support for their autonomous decision making throughout care, and particularly in the context of their death.
Scope of Practice
Another issue facing the BHC in this case was ensuring that her practice remained within the scope of her competence as a member of the integrated care team. Each of the codes also offers guidance for BHC scope of practice or professional expertise; practitioners are advised to be aware of that scope, to continue to educate themselves in an ongoing way, and to treat only those problems within the boundaries of their competence (e.g., APA Standard 2.01, Boundaries of Competence; NASW Standard 1.04 Competence).
This spirit becomes even more critical for BHCs practicing in integrated care settings. These BHCs often have access to health information, including that which they may be ill-equipped to interpret, and, at times, they are asked by patients and family members to deliver or decode this information outside of their scope of practice. It is also possible that a BHC will have access to medical information about which the patient him- or herself is not yet aware. Ideally, BHCs and medical collaborators negotiate this information role sharing explicitly at the start of a consultative relationship, and support the practice standard that BHCs defer to medical and nursing colleagues to deriver results or interpretations about medical information.
A common practice is to conduct joint visits, when possible, at the delivery of news, which sets the stage for further exploration of the patient and family experience of the news by the BHC. A related issue to articulating the professional collaborative role sharing is establishing informed consent with patients and family members about communication within the integrated care context.
Multiple Relationships and Confidentiality
Each of the codes explicitly guides professionals around issues of information sharing and the importance of maintaining confidentiality of the patient, with the exceptions of legal mandate, institutional guidelines or waivers, and authorization by the identified patient. It is also worth noting that the Health Insurance Portability and Accountability Act (1996) allows for information disclosure among treating clinicians, where ethical codes might be more restrictive.
The APA code emphasizes the importance of clarifying the relationship of the psychologist with each family member within the context of conjoint treatment, who is being identified as a patient, and how information will be shared (Standard 10.02). The NASW code (1.07 [f] Privacy and Confidentiality Standard) states that members "seek agreement among the parties involved concerning each individual's right to confidentiality and obligation to preserve the confidentiality of information shared by others." The AAMFY code further suggests clarifying the limits of confidentiality at the outset of treatment, with particular emphasis for those patients referred by a third party (in this case, the referring health care clinician) and highlights the need to protect patient privacy, even requiring written consent for disclosures between participating family members within the family therapy setting (Principle II: Confidentiality).
Each of the codes makes explicit mention of practitioners' responsibility to maintain accurate, timely, and adequate documentation. This documentation should be in accordance with jurisdictional and legal standards, and should aid in the provision of care of each patient both by others in the profession and also by those in other professions (e.g., APA Standard 6.02; AMA Opinion 7.025).
Although many BHCs practice in settings with integrated health care records, the ethical guidelines mentioned here do not provide additional specific guidance regarding electronic health records shared among members of the same care team. Although traditional mental health clinicians have prioritized and advocated for patient privacy, often at the expense of optimal "shared" care in the past, BHCs practicing in integrated care settings recognize the value of this information exchange for comprehensive biopsychosocial assessments and appropriate treatment planning. Recent dilemmas arise related to more nuanced documentations within an electronic health record that patients and other future health care clinicians will access this information for the foreseeable future. Now the questions expand to include how to document in a way that facilitates quality care, knowing that a patient can more readily acquire it, store or share it in an unprotected way, and perhaps without a true understanding of potential consequences.
Gaps in the Current Ethical Guidelines
Although the codes of ethics do offer some clarity and congruence regarding critical aspects of care, they do not fully address the complexities of family-oriented integrated care at the end of life. First, caring for multiple family members during a time when their individual needs and family needs may be quite different can be difficult to navigate. The issue of "who" is being treated is especially relevant for those who are trained in family- or systems-oriented disciplines and also for those who actively engage family and supportive others in care for individual "identified patients." The disciplines have various approaches to considering "multiple relationships" and provision of care to individuals and families. At the same time, BHCs may experience some tension around wanting to include other members in care when it makes sense to do so, while continuing to meet with patients individually when useful. This decision is often a judgment call driven by the organizing treatment plan, how the difference in session attendance meets the patient's goals, and, frankly, comfort of the treating clinician with adding family or others and related dynamics to the mix. We suggest that this flexibility around individual and family/contextual needs enriches the care of patients and families, though it can be challenging to negotiate at times.
Each of the codes rightfully acknowledges critical underlying principles, such as patient autonomy and informed consent processes that guide information sharing with patients, family members, and other clinicians. However, there remains a significant gap in written guidance for providing culturally informed family-oriented care at the end of life, and, at times, this raises ethical challenges for treating clinicians. Sea-burn, McDaniel, Kim, and Bassen (2004) propose that individual autonomy and family involvement are complementary ideals. Candib (2002) calls this "autonomy-in-relation," acknowledging the intersection of patient and family autonomy, which she then places within a cultural context. For many patients, there is an important balance of family honor and individualism, or even a preference for familialism that can create tensions around truth telling and decision making at the end of life. BHCs who are family-systems-trained and culturally competent can help navigate this delicate terrain between dominant U.S. medical culture and ethnic minority cultures that approach disclosure and decision making from different value systems. Consider the medical cultural norm of obtaining advanced directives in the settings of traditional cultures for whom family members can be counted on to "know what is best," or historically oppressed cultural groups for whom language about ending or limiting treatment can be interpreted by patients or their family members as further evidence of racism, which can, in turn, alter important relationships with care providers.
Like most family life-cycle transitions, end of life is a common time for family members to converge--sometimes in ways that reveal their strengths and depth of loving connection for each other, sometimes in ways that exacerbate the dysfunctional patterns and reactivate unfinished battles, touch old wounds, or highlight unresolved grief for the family. BHCs may find themselves simultaneously engaging the patient and family in the present moments of processing the diagnostic and prognostic information and each family member's emotions within this richly textured family history. Comments whispered at the patient's bedside, hallway consults with an estranged family member, expressions of anger at the health care team for failing to cure a loved one--these are common occurrences and may, at times, challenge the boundaries of the BHC, who may find herself needing to regularly reclarify the roles and expectations for information sharing.
These situations often also pull for someone on the team to function as a diplomat between and among differing opinions, either within the treatment team, among the family, or between the two systems. Although the BHC is not charged with the responsibility to deliver the "bad news" medical diagnosis, it is often the BHC's purview to elicit feelings about that news and facilitate information sharing between loved ones. A dilemma may arise as BHCs, especially those who document in shared medical records, learn information of which the patient or family may not yet be aware. Although we discussed the convention that medical providers offer diagnoses or "bad news," the professional codes do not adequately address the fairly common phenomenon of other members of the care team "knowing" information that is not entirely germane to their professional role in the case.
Second, the ethical code for social workers was the only one that overtly addressed the issue of interprofessional collaboration. Standard 2.03 (Interdisciplinary Collaboration) states that "social workers who are members of an interdisciplinary team should participate in and contribute to decisions that affect the well-being of clients by drawing on the perspectives, values, and experiences of the social work profession" and further clarifies that "professional and ethical obligations of the interdisciplinary team as a whole and of its individual members should be clearly established." It also addresses instances when team decisions raise ethical concerns for the social worker, recommending attempts at resolution through "appropriate channels" and "other avenues" to address concerns related to client well-being.
The AMA Opinion 2.211 is very specific that allowing physicians to participate in assisted suicide would cause more harm than good, and that physician-assisted suicide is fundamentally incompatible with the physician's role as healer. Although the APA neither endorses nor opposes assisted suicide, they encourage psychologists to take active roles in both clinical practice and research involving end-of-life issues and in providing competent, culturally sensitive care to the dying and their families. Thus, BHCs are likely to occupy a variety of different roles in interdisciplinary team meetings with patients and families specifically at the time of terminal diagnosis or end-of-life planning. These roles are typically context dependent to a particular team or setting and impacted by reimbursement constraints. We recommend that BHCs and other providers regularly (and often) touch base regarding role definition and information sharing. In this case, brief and direct conversation among the primary care provider (PCP) and specialists, and the PCP and BHC, and with the patient and her family punctuated critical moments and underscored the importance of those providers sharing care. Although BHCs may have time and flexibility that other providers do not, we should not presume that we will be the ones to "unpack" or that we will do it alone. Many medical providers engage in this process with families at the end of a patient's life--or wish to; BHCs may offer support to those providers or offer to join the conversation without assuming this role by themselves.
Revisiting the Case of Sheila and Her Family
In this case, providing integrated family-oriented end-of-life care highlighted what Candib (2002) termed "autonomy-in-relation." The BHC and her colleagues invited both Sheila and Jonathan to be active team members and decision makers, despite the many uncertainties of her illness, through her eventual death. This relational care developed over time, with Sheila's consent, particularly as her worries and fears grew. Offering care in this way allowed Jonathan to work through the unresolved grief of his own mother's death and to reexamine his mistrust of health care so that he could be more fully present to Sheila. This, in turn, supported her dignity, reduced her suffering, and encouraged her sense of agency amid the otherwise spiraling loss of control. Providing family and culturally informed care allowed for the balance of individual autonomy and relational connection that was supported by all members of the care team and facilitated by the BHC.
Throughout her work with the family, the BHC addressed the scope of practice issues by ensuring that she was regularly communicating with others in the team, clarifying roles and expectations for dialogue with the patient and family, and resisting Sheila's or her husband's bids for deciphering medical information for them. Conducting joint visits with Sheila's physician allowed the BHC to clearly distinguish her areas of competence, both to the patient and family, as well as to herself. She also made certain to seek out updates regarding Sheila's condition from those who were treating her, as other members of the team, rather than review records and attempt to interpret data with which she was not familiar. These steps helped to prevent the BHC from stepping into areas and roles outside of her professional expertise, and ensured that she continued to support the team in a manner consistent with her skills.
Another issue related to the scope of practice consideration is the care setting. The location of where care is provided typically changes when someone is facing the end of life, and effective BHC involvement requires providing end-of-life care where it needs to be provided whenever possible, and ensuring that all contact, regardless of location, is framed by our role vis-a-vis the patient, family, and the rest of care team, as well as documented in the patient record. "Visiting" a patient and their family at home, or in an inpatient setting, can open new territory for BHCs. Being in the family's home thickens the assessment of strengths and resources as well as stressors and vulnerabilities. Home visits can be very intimate, particularly during the poignant moments in the presence of a dying patient. A home visit also invites potential informality different than an office setting, patient and family culturally informed boundaries for privacy at home, and possible confusion for the professional boundaries. Some documentation of visits in the health or medical record is suggested, even when the intention of the visit is largely social. These can still be therapeutic encounters and may include helpful intervention and assessment that may be useful to others on the care team.
Sheila was seen individually for much of her care, but as she became more and more ill, and unable to manage independently, her husband became involved in care in a fluid, natural, and necessary way, as did her children. She had mixed feelings at different points regarding the inclusion of Jonathan, including what to tell him, and the BHC regularly engaged her in conversation about what she knew and understood about her health, what she wanted her husband to know, and when and how to discuss this in age-appropriate ways with her children. Over time, Sheila and Jonathan wrestled with their different worries and fears, tackled the ongoing treatment and nursing care decisions, and then the ultimate decision to withdraw life support. In the course of her care, this information about her husband, his functioning related to his abilities to care for her, and concerns he raised were all relevant for the care of the patient, his wife. The BHC engaged in multiple conversations with each partner about confidentiality and how conjoint sessions would be structured such that their individual information would not be shared by the BHC. This balance would have been enhanced by a "no secrets policy," which is promoted by the AAMFT when working with families; this verbal agreement becomes part of informed consent for the entire family unit, and prevents the practitioners from siding with one member over another by virtue of having information that they are explicitly "not allowed" to share.
In the absence of "family charts" in most settings, discretion is called for in terms of documenting sensitive information about another family member in a patient's health care record. BHCs must consider family member privacy as well, and should use minimal identifying information regarding those members. Use of language such as "patient reports" when describing information given by the patient about others is useful. It is important to include family information that is relevant to facilitating quality care.
We recommend that BHCs address explicitly this issue of sharing information, both in session and with collaborators on the team, whenever any new member (family or professional) joins the treatment, as part of informed consent. It may also be necessary for the BHC to raise the issue when uncertainty arises, and to discuss with the patient and family at the time of a relevant disclosure or discovery. Regarding family member concerns, as in the example of Sheila's husband's calls to the BHC, a careful and explicit conversation with the patient and anyone else they choose to include in treatment is important regarding confidentiality, keeping "secrets," and how those communications and disclosures will be managed by the BHCs.
This case also raises issues around multiple relationships and offers an example of the complexity added when family members enter treatment with the same provider over time. Offering care to Jonathan and the couple's children after Sheila's death needed to be approached by the BHC with care around her privacy and confidentiality even after her death. This family understandably preferred not to start from the beginning, and working with a clinician who knew the family story was a source of comfort to them. We recommend careful consideration, and consultation, around ensuring that information shared in the confidence and confines of an individual session be maintained when family members enter care, even after that patient's death.
In terms of team roles and relationships, the PCP and BHC, in this case, had a positive and collegial working relationship that enhanced their ability to collaborate, determine roles and functions in her care and interaction with her family, and offer support to each other. Working in a collaborative team can diminish the feeling of shouldering what may feel like an emotional burden by oneself. By consulting with one another, they served as reciprocal sounding boards to normalize and humanize their own experiences. The BHC and PCP had mutual respect, appreciation for and trust in the other's skill sets, and open dialogue about how we put those skills to use. Seaburn, Lorenz, Gunn, Gawinski, and Mauksch's (2003) Models of Collaboration offers a thorough review of strategies for establishing these kinds of relationships among collaborative team members, as well as the importance of maintaining these relationships, for patients and for ourselves. It bears mention, however, that these warm and effective relationships take time to cultivate, often begin with personalities that complement each other, and require some shared goals, points of connection, and common purpose.
Managing our own emotional reactions without sacrificing patient and family centeredness becomes paramount, especially when prognosis becomes poor. In this case, the BHC knew she had to seek regular consultation from a BHC colleague to help calibrate her decision making against the existing professional practice guidelines. Each of the professional organizations includes ethical guidance for attending to any external factors that might impair clinician judgment or quality of care, and a responsibility to hold colleagues to the same standard, and although some emotional reaction is normative, expected, and healthy, being reflective and seeking consultation to ensure one's emotional responses are not otherwise impairing one's judgment is essential. We recommend that BHCs recognize their unique contributions and potential role in the treatment system while being mindful that not all teams may need the BHC to function in this way. We encourage periodic self-assessment and discussion with others in the team about the process of sharing care, leadership, and who really ought to direct certain aspects of the care while others play a more supportive role. This kind of flexible hierarchy is not inherent in all interdisciplinary teams or relationships but is critical to sharing care in end-of-life cases.
End-of-life care can be one of the most rewarding and challenging aspects of a BHC's practice in an integrated family-oriented primary care setting. Current ethical codes provide guidance for supporting autonomy and for information sharing among clinicians, patients, and their family members. However, they largely fall short of capturing the complexities of the overlapping, and sometimes competing, demands of caring for multiple members of a family and for how a BHC's scope of practice might transform when caring for someone at the end of life and across care settings inherent to the end-of-life process (clinic, hospital, nursing facility, home, or hospice). BHCs will benefit from developing a resource for ongoing peer consultations to sustain themselves amid this professionally and personally meaningful work.
Received January 8, 2013
Accepted January 15, 2013
American Association for Marriage and Family Therapy. (2001). AAMFT code of ethics. Retrieved from http://www.aamft.org/resources/lrm_plan/ ethics/ethicscode2001.asp
American Medical Association. (2012). Code of medical ethics of the American Medical Association: Current opinions with annotations. Retrieved from http:/lcatalog.ama-assn.org/MEDIA/Product Catalog/m1100080/AMA%20Code%20of%20 Ethics.pdf
American Psychological Association. (2010). Ethical principles of psychologists and code of conduct. Retrieved from http://apa.org/ethics/code/index.aspx
Baggs, J. G., Norton, S. A., Schmitt, M. H., & Sellers, C. R. (2004). The dying patient in the ICU: Role of the interdisciplinary team. Critical Care Clinics, 20, 525-540. doi:10.1016/j.ccc.2004.03 .008
Buckman, R. (1992). How to break bad news: A guide for health care professionals. Baltimore, MD: Johns Hopkins University Press.
Candib, L. (2002). Truth-telling and advance directives at the end of life: Problems with autonomy in a multicultural world. Families, Systems & Health, 20, 213-228. doi:10.1037/h0089471
Connor, S. R., Egan, K. A., Kwilosz, D. M., Larson, D. G., & Reese, D. J. (2002). Interdisciplinary approaches to assisting with end-of-life care and decision making. American Behavioral Scientist, 46, 340-356. doi:10.1177/000276402237768
Fallowfield, L., & Jenkins V. (2004). Communicating sad, bad, and difficult news in medicine. Lancet, 363, 312-319.
Fineberg, I. C., Kawashima, M., & Asch, S. M. (2011). Communication with families facing life-threatening illness: A research-based model for family conferences. Journal of Palliative Medicine, 14, 421-427. doi:10.1089/jpm.2010.0436
Health Insurance Portability and Accountability Act of 1996. (1996). 42 U.S.C. [section] 1320d-9.
King, D. A., & Quill, T. (2006). Working with families in palliative care: One size does not fit all. Journal of Palliative Medicine, 9, 704-715. doi: 10.1089/jpm.2006.9.704
National Association of Social Workers. (2008). NASW code of ethics (Guide to the everyday professional conduct of social workers). Washington, DC: Author.
Quill, T. E., Arnold, R. M., & Platt, F. (2001). "I wish things were different." Annals of Internal Medicine, 135, 551-555.
Quill, T. E., & Townsend, P. (1991). Bad news: Delivery, dialogue, and dilemmas. Archives of Internal Medicine, 151, 463-468. doi:10.1001/ archinte. 1991.00400030033006
Seaburn, D. B., Lorenz, A. D., Gunn, W. B., Jr., Gawinski, B. A., & Mauksch, L. B. (2003). Models of collaboration: A guide for mental health professionals working with health care practitioners. New York, NY: Basic Books.
Seaburn, D. B., McDaniel, S. H., Kim, S., & Bassen, D. (2004). The role of the family in resolving bioethical dilemmas: Clinical insights from a family systems perspective. Journal of Clinical Ethics, 15, 123-134.
Werth, J. L. (2002). Legal and ethical considerations for mental health professionals related to end-of-life care and decision making. American Behavioral Scientist, 46, 373-388. doi:10.1177/ 000276402237770
Tziporah Rosenberg, PhD, LMFT, and Jenny Speice, PhD, LMFT
University of Rochester School of Medicine
Tziporah Rosenberg, PhD, LMFT, Department of Psychiatry and Department of Family Medicine, Institute for the Family, University of Rochester School of Medicine; Jenny Speice, PhD, LMFT, Department of Psychiatry, Institute for the Family, University of Rochester School of Medicine.
Correspondence concerning this article should be addressed to Tziporah Rosenberg, University of Rochester School of Medicine, Highland Family Medicine, 777 South Clinton Avenue, Rochester, NY 14620. E-mail: email@example.com
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|Author:||Rosenberg, Tziporah; Speice, Jenny|
|Publication:||Families, Systems & Health|
|Date:||Mar 1, 2013|
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