Risk, Accommodation, and Ethics in Hospice Care
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Ethics Series 2.8 ANCC Contact Hours Staying at Home Risk, Accommodation, and Ethics in Hospice Care Timothy W. Kirk, PhD Home hospice clinicians frequently care for patients who her dog, Marbles. As her disease progresses, her mobility wish to remain in their homes, even when doing so poses a decreases, and she is increasingly dependent upon her risk to patients’ safety. Through the use of a running case cane to ambulate throughout the apartment. She has a study, this article introduces readers to the concepts of (a) great deal of trouble moving in and out of a sitting the dignity of risk and (b) accommodation, arguing that positionVand it is here that the team’s concern is greatest. such concepts can be used as ethical principles to help Ms R has been visited twice by a physical therapist, who guide teams, patients, and family members in developing has taught her how best to transfer herself in and out of a plans of care for such patients. As regulatory requirements sitting position. She has been receptive to this teaching. dictate that US hospice nurses coordinate the care of home hospice patients, empowering such nurses to Nonetheless, as observed by her social worker and nurse develop the capacity to integrate ethical decision making and confirmed by the physical therapist, she is at increasing into their practice and engage their organization’s ethics risk for falls. Indeed, she has fallen twice in recent weeks, resources when struggling to balance competing care although on both occasions, the result was only significant values supports sound clinical practice. bruising. On the second occasion, however, she was not able to get up herself. Fortunately, a neighbor found her KEY WORDS only an hour later, helped her into her chair, and called the hospice. accommodation, dignity of risk, ethics, hospices, nursing Ms R’s nurse and adult daughter do not approve of her living alone. Although she now has a hospice home health s R is a 59-year-old woman with recently diag- aide who visits several times weekly to help her bathe, nosed stage IV metastatic lung cancer. She has funds are not available to privately hire more regular assis- metastases to her lungs and liver with diffuse M tance in the home. And Ms R adamantly refuses the idea of bone involvement and received radiation and systemic moving in with her daughter’s family or to an assisted living therapy after an initial resection. Recent imaging shows sig- facility. As concern escalates, it becomes an increasingly nificant progression of disease through several lines of heated topic on the interdisciplinary team (IDT). treatment. She describes worsening fatigue, dyspnea, and Ms R’s nurse, who coordinates her care on the hospice pain in her back, pelvis, and thighs. Just before her home IDT, is very worried about her safety. In fact, she some- hospice admission 1 month ago, she completed a course times wakes up at night with the urge to call Ms R and con- of palliative radiation to her spine and pelvis. She is at firm that she is okay, as she envisions her lying on the floor increased risk for pathological fractures, particularly in of her apartment after a fall. She does not believe the hos- her femurs, pelvis, and spine, where the bony involve- pice team can continue to offer care that sufficiently sup- ment is most significant. She requires continuous supple- ports Ms R in her home. It was the nurse who requested mental oxygen. that the hospice physician visit Ms R and evaluate her de- Ms R lives alone on the second floor of a small 4-story cision-making capacity. The capacity assessment was apartment building. Although she can be mildly forgetful, thorough and well documented, and the results unam- she has full decision-making capacity as assessed by 1 of biguously concluded that Ms R has capacity to make de- the team physicians and frequently verified by her social cisions about her care and sufficiently appreciates the worker. She has attentive neighbors who visit several times risks of continuing to live alone. The nurse agreed with per week and help her by taking out the trash and walking the assessment results but was nonetheless very disap- pointed, as a finding that Ms R lacked capacity would Timothy W. Kirk, PhD, is assistant professor of philosophy, City Uni- have given the team and her daughter much more lever- versity of New YorkYYork College, and ethics consultant, VNSNY Hos- pice and Palliative Care, New York. age in moving her to a different living environment Address correspondence to Timothy W. Kirk, PhD, 94-20 Guy R Brewer where she could be more closely supported around the Blvd, Jamaica, NY 11451 ([email protected]). clock. The author has no conflicts of interest to disclose. Ms R’s social worker, who has become more involved in DOI: 10.1097/NJH.0000000000000058 the case after the second fall, appreciates the nurse’s concern 200 www.jhpn.com Volume 16 & Number 4 & June 2014 Ethics Series and also values the patient’s safety. However, she feels and legal obligations to help the patient and the team strongly that Ms R has the right to live where she wants continue with an effective and mutually agreeable plan to and sees her role in this case as an advocate for Ms R’s of care. values and preferences. It was the social worker who Ms R’s nurse requested an ethics consultation through convinced the team that several visits from a physical the spiritual care counselor. There are several benefits of therapistVwith whom the hospice contracts for as-needed having a representative from each care team on a hospice servicesVwould be helpful, and she made 1 of those ethics committee. As happened in this case, the IDT mem- visits jointly. She has also spent timeVwith Ms R’s ber can be on the lookout for ethical questions, con- permissionVtalking with the daughter and the neigh- cerns, opportunities, and challenges in each team bors, helping to set up a plan of telephone and in-person meeting. That person can identify the issues, educate the check-ins with Ms R. team about various ways of thinking about the issues, Althoughthevalueofateam-basedapproachincases and clarify the role, function, and process of the ethics con- like this is precisely in the integration of different per- sultation process. In this case, as a member of the commit- spectives like that of the nurse and the social worker, tee, the spiritual care counselor could demythologize the the reality is that the tension between these perspec- operations of the case consultation process, address the tives is also creating tension between the nurse and the fears of team members, andVimportantlyVspeak about social worker. Indeed, this kind of tensionVbetween the the support available from first-hand experience. nurse pressing for greater intervention and the social In this hospice organization, case consultations are worker pressing to honor the patient’s preferencesVhas conducted by 1 of several members of the ethics committee become a familiar theme in this team’s meetings over the with extensive training in ethics consultation and media- past few years. tion. This allows for a timely response to the request and When the case is discussed in the weekly team meeting, for the consultation to be completed in a day or 2. When as the nurse and the social worker begin to replay their helpful or requested, the entire committee can convene now-familiar roles, the spiritual care counselor speaks to discuss a case. However, as many committee members up. Although he is not involved in the caseVMs R grate- are field clinicians spread over a large geographic area with fully declined the offer of his involvementVhe is a mem- their own caseloads, convening the committee as a whole ber of the hospice ethics committee. He suggests the on an ad hoc basis can be challenging. team ask for an ethics case consultation to help the team The consultant carefully reviewed the patient’s elec- and Ms R unpack the values and beliefs informing the tronic medical record and spoke individually with the discussion and decisions being made. His suggestion patient, the patient’s nurse, home health aide, social was brushed off, but he pressed the point. worker, consulting physical therapist, team manager, andVwith the patient’s permissionVthe patient’s daughter. ENGAGING ETHICS CASE He then prepared a brief report that explained the findings CONSULTATION from the process thus far, sharing the report with the team members and the patient. The initial resistance to the suggestion of an ethics case In the consultant’s report, 2 conceptual themes were consultation is quite understandable. The nurse and the so- used to frame the issues and values uncovered in his con- cial worker carry very high caseloads, and neither thinks versation with participants: (a) the dignity of risk and (b) she can spare the time to participate in an ethics consulta- accommodation. These were chosen because they cap- tion. And the team prides itself on figuring out ways to tured many of the phenomena embedded in the case proceed in such casesVwouldn’t requesting an ethics con- and incorporate important components of the hospice sultation be a sign of weakness or giving up? In addition, philosophy of care. In the next section, each theme is the team is very compassionate toward, and protective explainedandappliedtothecase. of, its patients. Wouldn’t requesting an ethics consultation mean ‘‘escalating’’ care decisions to a higher organizational RISK, ACCOMMODATION, AND THE level? Indeed, wouldn’t it be diluting the nurse’s role as HOSPICE PHILOSOPHY OF CARE ‘‘coordinator of care?’’ Although the answers to some of these questions will be It is tempting to see the questions raised by this case organization specific, if a hospice organization has a through the lens of a tension between the ethical principles healthy, well-trained ethics committee with the appropri- of nonmaleficence and autonomy.