Ms R is a 59-year-old woman with recently diagnosed stage IV metastatic lung cancer. She has metastases to her lungs and liver with diffuse bone involvement and received radiation and systemic therapy after an initial resection. Recent imaging shows significant progression of disease through several lines of treatment. She describes worsening fatigue, dyspnea, and pain in her back, pelvis, and thighs. Just before her home hospice admission 1 month ago, she completed a course of palliative radiation to her spine and pelvis. She is at increased risk for pathological fractures, particularly in her femurs, pelvis, and spine, where the bony involvement is most significant. She requires continuous supplemental oxygen.
Ms R lives alone on the second floor of a small 4-story apartment building. Although she can be mildly forgetful, she has full decision-making capacity as assessed by 1 of the team physicians and frequently verified by her social worker. She has attentive neighbors who visit several times per week and help her by taking out the trash and walking her dog, Marbles. As her disease progresses, her mobility decreases, and she is increasingly dependent upon her cane to ambulate throughout the apartment. She has a great deal of trouble moving in and out of a sitting position—and it is here that the team’s concern is greatest.
Ms R has been visited twice by a physical therapist, who has taught her how best to transfer herself in and out of a sitting position. She has been receptive to this teaching. Nonetheless, as observed by her social worker and nurse and confirmed by the physical therapist, she is at increasing risk for falls. Indeed, she has fallen twice in recent weeks, although on both occasions, the result was only significant bruising. On the second occasion, however, she was not able to get up herself. Fortunately, a neighbor found her only an hour later, helped her into her chair, and called the hospice.
Ms R’s nurse and adult daughter do not approve of her living alone. Although she now has a hospice home health aide who visits several times weekly to help her bathe, funds are not available to privately hire more regular assistance in the home. And Ms R adamantly refuses the idea of moving in with her daughter’s family or to an assisted living facility. As concern escalates, it becomes an increasingly heated topic on the interdisciplinary team (IDT).
Ms R’s nurse, who coordinates her care on the hospice IDT, is very worried about her safety. In fact, she sometimes wakes up at night with the urge to call Ms R and confirm that she is okay, as she envisions her lying on the floor of her apartment after a fall. She does not believe the hospice team can continue to offer care that sufficiently supports Ms R in her home. It was the nurse who requested that the hospice physician visit Ms R and evaluate her decision-making capacity. The capacity assessment was thorough and well documented, and the results unambiguously concluded that Ms R has capacity to make decisions about her care and sufficiently appreciates the risks of continuing to live alone. The nurse agreed with the assessment results but was nonetheless very disappointed, as a finding that Ms R lacked capacity would have given the team and her daughter much more leverage in moving her to a different living environment where she could be more closely supported around the clock.
Ms R’s social worker, who has become more involved in the case after the second fall, appreciates the nurse’s concern and also values the patient’s safety. However, she feels strongly that Ms R has the right to live where she wants to and sees her role in this case as an advocate for Ms R’s values and preferences. It was the social worker who convinced the team that several visits from a physical therapist—with whom the hospice contracts for as-needed services—would be helpful, and she made 1 of those visits jointly. She has also spent time—with Ms R’s permission—talking with the daughter and the neighbors, helping to set up a plan of telephone and in-person check-ins with Ms R.
Although the value of a team-based approach in cases like this is precisely in the integration of different perspectives like that of the nurse and the social worker, the reality is that the tension between these perspectives is also creating tension between the nurse and the social worker. Indeed, this kind of tension—between the nurse pressing for greater intervention and the social worker pressing to honor the patient’s preferences—has become a familiar theme in this team’s meetings over the past few years.
When the case is discussed in the weekly team meeting, as the nurse and the social worker begin to replay their now-familiar roles, the spiritual care counselor speaks up. Although he is not involved in the case—Ms R gratefully declined the offer of his involvement—he is a member of the hospice ethics committee. He suggests the team ask for an ethics case consultation to help the team and Ms R unpack the values and beliefs informing the discussion and decisions being made. His suggestion was brushed off, but he pressed the point.
ENGAGING ETHICS CASE CONSULTATION
The initial resistance to the suggestion of an ethics case consultation is quite understandable. The nurse and the social worker carry very high caseloads, and neither thinks she can spare the time to participate in an ethics consultation. And the team prides itself on figuring out ways to proceed in such cases—wouldn’t requesting an ethics consultation be a sign of weakness or giving up? In addition, the team is very compassionate toward, and protective of, its patients. Wouldn’t requesting an ethics consultation mean “escalating” care decisions to a higher organizational level? Indeed, wouldn’t it be diluting the nurse’s role as “coordinator of care?”
Although the answers to some of these questions will be organization specific, if a hospice organization has a healthy, well-trained ethics committee with the appropriate skills and expertise to conduct competent case consultation, the answers to all 3 of these questions should be a resounding no. What follows is 1 way a case consultation could proceed to explore and clarify values, preferences, and legal obligations to help the patient and the team continue with an effective and mutually agreeable plan of care.
Ms R’s nurse requested an ethics consultation through the spiritual care counselor. There are several benefits of having a representative from each care team on a hospice ethics committee. As happened in this case, the IDT member can be on the lookout for ethical questions, concerns, opportunities, and challenges in each team meeting. That person can identify the issues, educate the team about various ways of thinking about the issues, and clarify the role, function, and process of the ethics consultation process. In this case, as a member of the committee, the spiritual care counselor could demythologize the operations of the case consultation process, address the fears of team members, and—importantly—speak about the support available from first-hand experience.
In this hospice organization, case consultations are conducted by 1 of several members of the ethics committee with extensive training in ethics consultation and mediation. This allows for a timely response to the request and for the consultation to be completed in a day or 2. When helpful or requested, the entire committee can convene to discuss a case. However, as many committee members are field clinicians spread over a large geographic area with their own caseloads, convening the committee as a whole on an ad hoc basis can be challenging.
The consultant carefully reviewed the patient’s electronic medical record and spoke individually with the patient, the patient’s nurse, home health aide, social worker, consulting physical therapist, team manager, and—with the patient’s permission—the patient’s daughter. He then prepared a brief report that explained the findings from the process thus far, sharing the report with the team members and the patient.
In the consultant’s report, 2 conceptual themes were used to frame the issues and values uncovered in his conversation with participants: (a) the dignity of risk and (b) accommodation. These were chosen because they captured many of the phenomena embedded in the case and incorporate important components of the hospice philosophy of care. In the next section, each theme is explained and applied to the case.
RISK, ACCOMMODATION, AND THE HOSPICE PHILOSOPHY OF CARE
It is tempting to see the questions raised by this case through the lens of a tension between the ethical principles of nonmaleficence and autonomy. Nonmaleficence can be understood as the duty on the part of health care providers to (a) not cause and (b) prevent harm.1 In this case, one could see the harm to be prevented as Ms R experiencing additional falls. Autonomy can be understood as the duty to respect a patient’s moral personhood by honoring her carefully deliberated preferences.2 In this case, Ms R’s preference is to remain living with Marbles in her home. She does not wish to move into her daughter’s home or an assisted living facility.
Although such an ethical analysis is helpful, it fails to capture the many nuances and dynamic forces at play in this case. It also uses simplified formulations of nonmaleficence and autonomy that, although popular in the literature and practice of health care ethics in general, have not been informed by, and appropriately infused with, (a) the context of giving and receiving care in the home and (b) the central tenets of the hospice philosophy of care. For these reasons, the consultant instead used the dignity of risk and accommodation as guiding principles in his report.
Ms R’s nurse is concerned that it is no longer safe for her to live alone in her apartment. This concern is based on her increasing frailty and 2 recent falls. It is reasonable to conclude that Ms R is at high risk for falling again if she continues to live alone; none of the conditions that have contributed to her 2 recent falls have changed. Ms R does not disagree with this assessment. She acknowledges that she is increasingly weak and unsteady and will likely fall again in the near future. As such, Ms R and her nurse do not disagree on the facts of the case or the likely implications of those facts. Indeed, as will be discussed below, these facts constitute an important—and potentially valuable—point of agreement between them.
Where Ms R and her nurse part ways is on what constitutes an acceptable threshold of risk and the appropriate way to balance that risk against other important goals and values that inform how Ms R has chosen to live her life, including the final months of her life. In short, Ms R accepts the risk of falling because, in doing so, she remains able to live on her own with Marbles. Given the choice between (a) lowering her risk of falling by moving in with her daughter or to an assisted living facility and (b) living on her own with a higher risk of falling, she chooses the latter. Ms R’s nurse, on the other hand, places a higher value on her safety. She sees her job, in part, as one of ensuring that Ms R’s risk of injury is sufficiently lowered. As such, the tension between the 2 viewpoints is precisely a difference of values.
In their discussion, the ethics consultant explores the value of safety with the nurse. He asks where it comes from, why it is so important, how she would define “safety,” and what she sees as an acceptable threshold of risk from her point of view. The conversation is illuminating. The nurse explains that her classroom and clinical training in nursing school emphasized patient safety and that tasks like verifying medications before administration, use of universal precautions to prevent infection, and raising bedrails in hospitals or lowering the height of beds in rehabilitation facilities to prevent falls were hallmarks of her education. Her recollection is that her preceptors were “obsessed” with safety, and she equates ensuring patient safety with being a “good nurse.”
What became clear to the nurse and the ethics consultant in the course of their conversation is that the concern with preventing another fall for Ms R was not only about protecting Ms R. It was also about enabling the nurse to practice in a manner consistent with her ability to maintain a self-image as a good nurse. Preventing a fall, in other words, was protecting both Ms R and the nurse, the former physically and the second psychologically.
The consultant introduced the team to a concept called the dignity of risk. Attributed to Perske,3 the concept was first used in advocating for the right of developmentally disabled individuals to exercise greater freedom in their daily lives. It has subsequently played a similar role in advocating for the rights of those with chronic mental illness. The logic, he explained, is rather elementary: There is little we do in life that does not require us to take risks. And, it is often in taking risks that human beings realize the greatest joys and successes in life, in addition to the greatest disappointments and harms. To live a full, meaningful life as a human being means to take risks, for it is in taking such risks that the opportunity for meaningful discovery, growth, and change arises.
A defining task of being a moral agent therefore requires one to assess risk, make decisions, and execute actions based on those assessments. Owning and exercising responsibility for that process and accepting the consequences that arise from such assessments, decisions, and actions are central parts of ethical life. As such, part of acknowledging and respecting the moral personhood of others is respecting their right to assess risk and take actions based on those assessments and allowing them to accept the consequences that arise. Respecting others’ right to take risks respects their dignity as full moral persons, hence the “dignity of risk.”
When decision-making capacity is compromised, the ability to assess risk and make decisions based on such assessment may also be compromised. It is for this reason that one can make an ethical case to limit the kinds of decisions that such persons can make without assistance, as such limits are decision specific—placed in response to the ability of persons to engage in decisions of varying complexity. When decision-making capacity is not compromised, however, as is the case in Ms R’s situation, one is hard pressed to ethically justify significantly limiting her right to assess risk and make her own decisions based on such assessment. The threshold for decision-making capacity is not, and should not be, raised simply because the choices that a patient is making bring with them a certain degree of risk.4 Discounting Ms R’s right to deliberatively balance risk with other values in her life and make decisions based on such deliberation would be a significant affront not only to her right to make autonomous decisions but also to her dignity as a human person. If the primary risk in Ms R’s case is the risk of falling—a risk that does not put others in her building, for example, at risk in the same way as the risk of forgetting to turn off a stove burner—then as a person with decision-making capacity who bears almost the entirety of the risk, she is best positioned to evaluate how that risk should be balanced with other goals and values in her life as she makes decisions.
If one accepts this interpretation and application of the dignity of risk, it provides the basis for an argument to accept Ms R’s decision to continue living in her apartment with Marbles. This is not the end of the story, however. As was mentioned earlier, Ms R’s nurse is experiencing significant distress related to fear and anxiety about Ms R falling. This distress is relevant insofar as Ms R is not the only moral agent involved in the case. Ms R’s daughter and care team are also moral agents and also have obligations to themselves to be able to act in ways resonant with their professional values as clinicians and personal values as a daughter. Although Ms R’s dignity and ethical integrity as the patient are of paramount importance, they are not exclusively important.
It is here that the concept of accommodation can be helpful. As developed in a seminal 1990 article by Collopy et al,5 accommodation acknowledges the ways in which patient autonomy is frequently a shared and dynamic phenomenon when care is given and received in the home rather than in a health care institution. When care is given in the home, as more than 95% of US hospice care is,6 the context of the clinician-patient relationship is quite different than in a hospital or long-term care facility. Clinicians are guests in patients’ homes, and in their own homes, many patients have an “emboldened” sense of autonomy. Clinicians are often partnering with family or other community members in supporting patients as they attempt to maintain their ability to function and thrive in a familiar and chosen living environment. The level of cooperation and coordination between multiple parties requires a certain amount of accommodation from all involved: accommodation of schedules, of levels of ability, of histories and feelings between caregivers and patient, and of different values and preferences relevant to the care experience.
In home hospice care, there is (ideally) acknowledgement on the part of all parties that this is the patient’s final illness and, as such, final opportunity to live life in his/her home. As such, the patient’s values and preferences exert an organizing influence in the accommodation process. However, the patient herself will also need to accommodate the abilities and preferences of parties involved in her care. Neighbors may be able and willing to walk Marbles, for example, but may not be able to do so at the time or on the precise route that Ms R did. The hospice organization may be able to offer home health aide services to assist Ms R with bathing, dressing, and light cleaning but may not be able to do so as frequently or at the precise times she prefers. Ms R’s daughter may be able to help with cleaning, bill paying, and facilitating meal service delivery, but only at times or at a frequency that does not significantly interrupt her ability to care for her own children.
As Ms R becomes increasingly frail and, as a result, increasingly dependent upon the assistance of others, the gap between her ability to autonomously make decisions and her ability to autonomously execute those decisions grows. As a result, she must accommodate the availability and capacity of others—professional caregivers and volunteer family members and neighbors—to support her in life’s daily struggles and victories. Such accommodation is quite an adjustment for a patient like Ms R, who would much prefer to care for herself the way she has done for most of her life. In ways like this, Collopy et al5 note, Ms R’s autonomy has also been eroded.
Appealing to the dignity of risk and accommodation as ethical guideposts to help the team navigate a way forward with Ms R resonates strongly with the hospice philosophy of care. In articulating the core concepts of the hospice philosophy of care, Cicely Saunders, widely considered the founder of the hospice movement, focused squarely on preserving and respecting the moral agency of dying patients.7,8 Indeed, in beginning a new kind of care for the dying that was an alternative to hospital-based oncology, Saunders7 emphasized that the care should be organized and delivered in a manner informed, first and foremost, by how and where patients wished to die.
Continuity of care for people suffering from persistent cancer aims to ensure that throughout the whole course of the disease they receive treatment appropriate to each stage and that, as far as possible, this is carried out in the place that accords best with their own way of life and its commitments.(p636)
By supporting the nurse and team in a manner that focused goals of care back on the values and preferences of the patient, the consultant was also reorienting ethical deliberation away from ethical values developed in acute care medicine and toward ethical values consistent with the hospice philosophy of care.
VALUES-BASED CARE COORDINATION FOR MS R
Having helped the parties involved identify and articulate their values and having offered an ethical framework through which to organize and integrate those values, the ethics consultant encouraged the nurse and social worker to arrange a meeting with the patient and daughter in the patient’s home to review a plan going forward. Because all of the parties still had a productive and collegial working relationship, there was no need for the consultant to mediate the meeting.
In preparation for the family meeting, the nurse and the social worker met together to brainstorm how the team and Ms R could proceed collaboratively in a way informed by the concepts of accommodation and the dignity of risk, while still attentive to concerns of safety and harm reduction.
Accommodating Ms R’s values and preferences while at the same time accommodating the concerns and values of her care team means identifying and proposing options that recognize Ms R’s right to stay in her apartment while continuing to reduce the risk of falls. She cannot be removed from her home against her will—there is no legal mechanism that would support that. She cannot be involuntarily discharged from hospice care for cause: She is benefitting from the support of her nurse, home health aide, physician, and social worker, with whom she collaborates carefully and intentionally. As such, there is no regulatory basis for discharge.9 Moreover, discharging her from hospice will increase, not decrease, the risk of fall and further harm. Therefore, it will not promote the value—safety—that the nurse is committed to promoting.
Partnering with Ms R to minimize her risk can take many forms, and the IDT can support the nurse in proposing several elements of a plan of care to Ms R moving forward. Continuing physical therapy visits to educate and strengthen Ms R might be helpful. As her falls have involved getting on and off the toilet, a portable, height-adjustable commode in the living room and bedroom might ease her transfer process. A local contractor or handy volunteer might help install wall railings or other accommodations to assist Ms R as she walks throughout the apartment. A medical alert system that can be worn by the patient and calls the hospice operator at the push of a button could summon non-emergency medical services assistance in the event of a future fall. Partnering with the social worker, physical therapist, and Ms R, the nurse can develop a plan of care attentive to reducing risk of harm while simultaneously incorporating Ms R’s value of independent living as 1 of the explicit goals of care.
Similarly, accommodations can be made to address the anxiety of the nurse. A volunteer can make daily telephone checks with Ms R, which can be documented by a volunteer manager in the electronic medical record. Team member colleagues can reinforce the dignity of risk concept, challenging the thought that allowing Ms R to accept the risk of falling is equivalent to being a bad nurse.
Finally, the nurse and social worker can arrange a meeting with Ms R and her daughter to develop a plan for “worst case scenarios.”10 Such discussions can emphasize the shared goal of keeping Ms R in her home while also acknowledging that some consequences of accepting the risk—a complex hip fracture arising from a future fall, for example, or diminished decision-making capacity that results in a pattern of choices that put herself and her neighbors in danger—may make staying in her home alone no longer possible. Prospectively eliciting Ms R’s preferences for such future circumstances accommodates her preference to remain in her home by soliciting her involvement as an autonomous decision maker and accommodates the needs of the team and family in planning for the future.
What are the lessons learned from this case?
- There were significant benefits to engaging ethics case consultation in the case of Ms R. Having access to a consultant who was knowledgeable about the hospice philosophy of care helped the team adapt principles and concepts from the health care ethics literature to the environment of home hospice care, and being thorough in eliciting the values and concerns of all parties involved allowed the team to reframe the issues in the case. Bringing in a neutral third party refocused attention away from the growing disagreement between the nurse and the social worker and back on how best to support Ms R in a manner consistent with her values and resonant with the hospice philosophy of care. The case consultation process was advisory and did not interfere with the nurse’s role in coordinating Ms R’s care.
- It was helpful to have a member of the ethics committee on the IDT. The spiritual care counselor was able to identify a values-based concern in the team meeting, recommend ethics case consultation, and address myths and fears about engaging the case consultation process.
- Because most hospice care is delivered in the home and because giving and receiving care in the home are significantly different—ethically and legally—from giving and receiving care in a health care institution, ethical analysis and decision making in home hospice care can be significantly different than in other environments. Identifying an acceptable threshold of risk and balancing safety with other goals of care in home hospice care are processes strongly influenced by the values and decisions of patients; health care providers need to accommodate such values and decisions to effectively partner with patients in delivering good care.
- Ms R may fall again; indeed, it is likely she will. If she does, this does not imply clinical or ethical failure on the part of the care team in general or the nurse in particular. Rather, it is 1 of many consequences—others quite positive—arising from respecting Ms R’s dignity and accommodating her right to take risks in living her final months consistent with lifelong values and choices.
The author thanks Jennifer Johnston, RN, BSN, for helpful comments on earlier drafts of this manuscript.