Ethics Series 2.8 ANCC Contact Hours Staying at Home Risk, Accommodation, and Ethics in 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, , 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 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

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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. Nonmaleficence can be ate skills and expertise to conduct competent case consul- understood as the duty on the part of health care providers tation, the answers to all 3 of these questions should be a to (a) not cause and (b) prevent harm.1 In this case, one resounding no. What follows is 1 way a case consultation could see the harm to be prevented as Ms R experiencing could proceed to explore and clarify values, preferences, additional falls. Autonomy can be understood as the duty

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to respect a patient’s moral personhood by honoring her bilitation facilities to prevent falls were hallmarks of her carefully deliberated preferences.2 In this case, Ms R’s education. Her recollection is that her preceptors were preference is to remain living with Marbles in her home. ‘‘obsessed’’ with safety, and she equates ensuring pa- She does not wish to move into her daughter’s home or tient safety with being a ‘‘good nurse.’’ an assisted living facility. What became clear to the nurse and the ethics consul- Although such an ethical analysis is helpful, it fails to tant in the course of their conversation is that the concern capture the many nuances and dynamic forces at play with preventing another fall for Ms R was not only about in this case. It also uses simplified formulations of protecting Ms R. It was also about enabling the nurse to nonmaleficence and autonomy that, although popular in practice in a manner consistent with her ability to maintain the literature and practice of health care ethics in general, a self-image as a good nurse. Preventing a fall, in other have not been informed by, and appropriately infused words, was protecting both Ms R and the nurse, the former with, (a) the context of giving and receiving care in the physically and the second psychologically. home and (b) the central tenets of the hospice philosophy The consultant introduced the team to a concept called of care. For these reasons, the consultant instead used the the dignity of risk. Attributed to Perske,3 the concept was dignity of risk and accommodation as guiding principles first used in advocating for the right of developmen- in his report. tally disabled individuals to exercise greater freedom in Ms R’s nurse is concerned that it is no longer safe for her their daily lives. It has subsequently played a similar role to live alone in her apartment. This concern is based on in advocating for the rights of those with chronic mental her increasing frailty and 2 recent falls. It is reasonable illness. The logic, he explained, is rather elementary: There to conclude that Ms R is at high risk for falling again if is little we do in life that does not require us to take risks. she continues to live alone; none of the conditions And, it is often in taking risks that human beings realize that have contributed to her 2 recent falls have changed. the greatest joys and successes in life, in addition to the Ms R does not disagree with this assessment. She acknowl- greatest disappointments and harms. To live a full, mean- edges that she is increasingly weak and unsteady and will ingful life as a human being means to take risks, for it is in likely fall again in the near future. As such, Ms R and her taking such risks that the opportunity for meaningful dis- nurse do not disagree on the facts of the case or the likely covery, growth, and change arises. implications of those facts. Indeed, as will be discussed be- A defining task of being a moral agent therefore requires low, these facts constitute an importantVand potentially one to assess risk, make decisions, and execute actions valuableVpoint of agreement between them. based on those assessments. Owning and exercising re- Where Ms R and her nurse part ways is on what consti- sponsibility for that process and accepting the conse- tutes an acceptable threshold of risk and the appropriate quences that arise from such assessments, decisions, and way to balance that risk against other important goals actions are central parts of ethical life. As such, part of ac- and values that inform how Ms R has chosen to live her life, knowledging and respecting the moral personhood of including the final months of her life. In short, Ms R accepts others is respecting their right to assess risk and take actions the risk of falling because, in doing so, she remains able to based on those assessments and allowing them to accept live on her own with Marbles. Given the choice between the consequences that arise. Respecting others’ right to (a) lowering her risk of falling by moving in with her take risks respects their dignity as full moral persons, hence daughter or to an assisted living facility and (b) living on the ‘‘dignity of risk.’’ her own with a higher risk of falling, she chooses the latter. When decision-making capacity is compromised, the Ms R’s nurse, on the other hand, places a higher value on ability to assess risk and make decisions based on such as- her safety. She sees her job, in part, as one of ensuring that sessment may also be compromised. It is for this reason Ms R’s risk of injury is sufficiently lowered. As such, the that one can make an ethical case to limit the kinds of de- tension between the 2 viewpoints is precisely a difference cisions that such persons can make without assistance, of values. as such limits are decision specificVplaced in response In their discussion, the ethics consultant explores the to the ability of persons to engage in decisions of varying value of safety with the nurse. He asks where it comes complexity. When decision-making capacity is not com- from, why it is so important, how she would define ‘‘safety,’’ promised, however, as is the case in Ms R’s situation, one and what she sees as an acceptable threshold of risk from is hard pressed to ethically justify significantly limiting her point of view. The conversation is illuminating. The her right to assess risk and make her own decisions based nurse explains that her classroom and clinical training in on such assessment. The threshold for decision-making nursing school emphasized patient safety and that tasks capacity is not, and should not be, raised simply because like verifying medications before administration, use of the choices that a patient is making bring with them a cer- universal precautions to prevent infection, and raising tain degree of risk.4 Discounting Ms R’s right to delibera- bedrails in hospitals or lowering the height of beds in reha- tively balance risk with other values in her life and make

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decisions based on such deliberation would be a signif- bles, for example, but may not be able to do so at the time icant affront not only to her right to make autonomous de- or on the precise route that Ms R did. The hospice organi- cisions but also to her dignity as a human person. If the zationmaybeabletoofferhomehealthaideservices primary risk in Ms R’s case is the risk of fallingVariskthat to assist Ms R with bathing, dressing, and light cleaning does not put others in her building, for example, at risk in but may not be able to do so as frequently or at the pre- the same way as the risk of forgetting to turn off a stove cise times she prefers. Ms R’s daughter may be able to burnerVthen as a person with decision-making capacity help with cleaning, bill paying, and facilitating meal ser- who bears almost the entirety of the risk, she is best posi- vice delivery, but only at times or at a frequency that does tioned to evaluate how that risk should be balanced with not significantly interrupt her ability to care for her own other goals and values in her life as she makes decisions. children. If one accepts this interpretation and application As Ms R becomes increasingly frail and, as a result, in- of the dignity of risk, it provides the basis for an argu- creasingly dependent upon the assistance of others, the ment to accept Ms R’s decision to continue living in gap between her ability to autonomously make decisions her apartment with Marbles. This is not the end of the and her ability to autonomously execute those decisions story, however. As was mentioned earlier, Ms R’s nurse grows. As a result, she must accommodate the availabil- is experiencing significant distress related to fear and ity and capacity of othersVprofessional and vol- anxiety about Ms R falling. This distress is relevant inso- unteer family members and neighborsVto support her in far as Ms R is not the only moral agent involved in the life’s daily struggles and victories. Such accommodation case. Ms R’s daughter and care team are also moral is quite an adjustment for a patient like Ms R, who would agents and also have obligations to themselves to be much prefer to care for herself the way she has done able to act in ways resonant with their professional for most of her life. In ways like this, Collopy et al5 note, values as clinicians and personal values as a daughter. Ms R’s autonomy has also been eroded. Although Ms R’s dignity and ethical integrity as the pa- Appealing to the dignity of risk and accommodation tient are of paramount importance, they are not exclu- as ethical guideposts to help the team navigate a way for- sively important. ward with Ms R resonates strongly with the hospice phi- It is here that the concept of accommodation can be losophy of care. In articulating the core concepts of the helpful. As developed in a seminal 1990 article by Collopy hospice philosophy of care, Cicely Saunders, widely con- et al,5 accommodation acknowledges the ways in which sidered the founder of the hospice movement, focused patient autonomy is frequently a shared and dynamic squarely on preserving and respecting the moral agency phenomenon when care is given and received in the of dying patients.7,8 Indeed, in beginning a new kind of home rather than in a health care institution. When care care for the dying that was an alternative to hospital-based is given in the home, as more than 95% of US hospice oncology, Saunders7 emphasized that the care should be care is,6 the context of the clinician-patient relationship organized and delivered in a manner informed, first and is quite different than in a hospital or long-term care fa- foremost, by how and where patients wished to die. cility. Clinicians are guests in patients’ homes, and in their own homes, many patients have an ‘‘emboldened’’ Continuity of care for people suffering from persistent sense of autonomy. Clinicians are often partnering with cancer aims to ensure that throughout the whole course of family or other community members in supporting pa- the disease they receive treatment appropriate to each tients as they attempt to maintain their ability to function stage and that, as far as possible, this is carried out in the and thrive in a familiar and chosen living environment. place that accords best with their own way of life and its The level of cooperation and coordination between mul- commitments.(p636) tiple parties requires a certain amount of accommodation from all involved: accommodation of schedules, of levels By supporting the nurse and team in a manner that fo- of ability, of histories and feelings between caregivers cused goals of care back on the values and preferences of and patient, and of different values and preferences the patient, the consultant was also reorienting ethical de- relevant to the care experience. liberation away from ethical values developed in acute In home hospice care, there is (ideally) acknowledge- care medicine and toward ethical values consistent with ment on the part of all parties that this is the patient’s final the hospice philosophy of care. illness and, as such, final opportunity to live life in his/her home. As such, the patient’s values and preferences exert VALUES-BASED CARE COORDINATION an organizing influence in the accommodation process. FOR MS R However, the patient herself will also need to accommo- date the abilities and preferences of parties involved in Having helped the parties involved identify and articulate her care. Neighbors may be able and willing to walk Mar- their values and having offered an ethical framework

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through which to organize and integrate those values, Finally, the nurse and social worker can arrange a meet- the ethics consultant encouraged the nurse and social ing with Ms R and her daughter to develop a plan for ‘‘worst worker to arrange a meeting with the patient and daughter case scenarios.’’10 Such discussions can emphasize the in the patient’s home to review a plan going forward. Be- shared goal of keeping Ms R in her home while also cause all of the parties still had a productive and collegial acknowledging that some consequences of accepting the working relationship, there was no need for the consultant riskVa complex hip fracture arising from a future fall, to mediate the meeting. for example, or diminished decision-making capacity In preparation for the family meeting, the nurse and that results in a pattern of choices that put herself and her the social worker met together to brainstorm how the team neighbors in dangerVmaymakestayinginherhome and Ms R could proceed collaboratively in a way informed alone no longer possible. Prospectively eliciting Ms R’s by the concepts of accommodation and the dignity preferences for such future circumstances accommodates of risk, while still attentive to concerns of safety and harm her preference to remain in her home by soliciting her in- reduction. volvement as an autonomous decision maker and accom- Accommodating Ms R’s values and preferences while at modates the needs of the team and family in planning for the same time accommodating the concerns and values the future. of her care team means identifying and proposing op- tions that recognize Ms R’s right to stay in her apart- CONCLUDING REFLECTIONS ment while continuing to reduce the risk of falls. She cannot be removed from her home against her willVthere What are the lessons learned from this case? is no legal mechanism that would support that. She can- 1. There were significant benefits to engaging ethics not be involuntarily discharged from hospice care for case consultation in the case of Ms R. Having access cause: She is benefitting from the support of her nurse, to a consultant who was knowledgeable about the home health aide, physician,andsocialworker,with hospice philosophy of care helped the team adapt whom she collaborates carefully and intentionally. As such, principles and concepts from the health care ethics there is no regulatory basis for discharge.9 Moreover, dis- literature to the environment of home hospice care, charging her from hospice will increase, not decrease, and being thorough in eliciting the values and con- the risk of fall and further harm. Therefore, it will not pro- cerns of all parties involved allowed the team to mote the valueVsafetyVthat the nurse is committed to reframe the issues in the case. Bringing in a neutral promoting. third party refocused attention away from the grow- Partnering with Ms R to minimize her risk can take ing disagreement between the nurse and the social many forms, and the IDT can support the nurse in pro- worker and back on how best to support Ms R in a posing several elements of a plan of care to Ms R moving manner consistent with her values and resonant with forward. Continuing physical therapy visits to educate the hospice philosophy of care. The case consulta- and strengthen Ms R might be helpful. As her falls have tion process was advisory and did not interfere with involved getting on and off the toilet, a portable, height- the nurse’s role in coordinating Ms R’s care. adjustable commode in the living room and bedroom 2. It was helpful to have a member of the ethics commit- might ease her transfer process. A local contractor or tee on the IDT. The spiritual care counselor was able handy volunteer might help install wall railings or other to identify a values-based concern in the team meet- accommodations to assist Ms R as she walks throughout ing, recommend ethics case consultation, and ad- the apartment. A medical alert system that can be worn dress myths and fears about engaging the case by the patient and calls the hospice operator at the push of consultation process. a button could summon non-emergency medical services 3. Because most hospice care is delivered in the assistance in the event of a future fall. Partnering with the home and because giving and receiving care in the social worker, physical therapist, and Ms R, the nurse can home are significantly differentVethically and develop a plan of care attentive to reducing risk of harm legallyVfrom giving and receiving care in a health while simultaneously incorporating Ms R’s value of inde- care institution, ethical analysis and decision making pendent living as 1 of the explicit goals of care. in home hospice care can be significantly different Similarly, accommodations can be made to address the than in other environments. Identifying an accept- anxiety of the nurse. A volunteer can make daily telephone able threshold of risk and balancing safety with other checks with Ms R, which can be documented by a volun- goals of care in home hospice care are processes teer manager in the electronic medical record. Team mem- strongly influenced by the values and decisions of ber colleagues can reinforce the dignity of risk concept, patients; health care providers need to accommodate challenging the thought that allowing Ms R to accept the such values and decisions to effectively partner with risk of falling is equivalent to being a bad nurse. patients in delivering good care.

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4. Ms R may fall again; indeed, it is likely she will. If she Nursing Ethics. 3rd ed. Peterborough, Ontario, Canada: does, this does not imply clinical or ethical failure Broadview Press; 2010:143-205. 3. Perske R. The dignity of risk and the mentally retarded. Ment on the part of the care team in general or the nurse Retard. 1972;10(1):24-27. in particular. Rather, it is 1 of many consequencesV 4. Wicclair MR. Patient decision-making capacity and risk. Bioethics. others quite positiveVarising from respecting Ms R’s 1991;5(2):91-104. dignity and accommodating her right to take risks in 5. Collopy C, Dubler N, Zuckerman C. The ethics of : autonomy and accommodation. Hastings Cent Rep. 1990;20(2):1-16. living her final months consistent with lifelong values 6. National Hospice and Palliative Care Organization. NHPCO and choices. Facts and Figures: Hospice Care in America. Alexandria, VA: National Hospice and Palliative Care Organization; 2013. http://www.nhpco.org/sites/default/files/public/Statistics_ Acknowledgment Research/2013_Facts_Figures.pdf. Accessed January 4, 2014. The author thanks Jennifer Johnston, RN, BSN, for helpful 7. Saunders C. Terminal pain and the hospice concept. In Bonica JJ, comments on earlier drafts of this manuscript. Ventafridda V, eds. Advances in Pain Research and Therapy.Vol.2. New York, NY: Raven Press; 1979:635-651. 8. Kirk TW. Hospice care as a moral practice: exploring the References philosophy and ethics of hospice care. In: Kirk TW, Jennings B, 1. Yeo M, Moorhouse A. Beneficence. In: Yeo M, Moorhouse A, eds. Hospice Ethics. New York, NY: Oxford University Press. Khan P, Rodney P, eds. Concepts and Cases in Nursing Ethics. In press. 3rd ed. Peterborough, Ontario, Canada: Broadview Press; 9. Discharge from Hospice Care, 42 C.F.R. Sect. 418.26 (2008). 2010:103-142. 10. Smith AK, Lo B, Aronson A. Elder self-neglectVhow can a physician 2. Moorhouse A, Yeo M, Rodney P. Autonomy. In: Yeo M, help? NEnglJMed. 2013;369(26):2476-2479. doi:10.1056/ Moorhouse A, Khan P, Rodney P, eds. Concepts and Cases in NEJMp1310684

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