‘Sit down and thrash it out’: opportunities for expanding ethics consultation during conflict resolution in long-term care*

Abstract

Objective: To identify the frequency and nature of care conflict dilemmas that United States long-term care providers encounter, response strategies, and use of ethics resources to assist with dispute resolution. Design: An online cross-sectional survey was distributed to the Society for Post-Acute and Long-Term Care Medicine (AMDA). Results: Two-thirds of participants, primarily medical directors, have rejected surrogate instructions and 71% have managed family conflict. Conflict over treatment decisions and issues interpreting advance directives were frequently reported. Half of facilities lack a formal dispute mediation policy. Only five respondents have called an ethics consult for assistance. Conclusion: Ethically tense care conflicts commonly arise in long-term and post-acute care facilities. Few facility procedures incorporate ethics resources into actual practice. Recommendations are made to create actionable policy, increase access to ethics services, and support staff skill development in order to improve the end-of-life care experiences for patients, families, and care facility staff.

KEYWORDS:

• dementia
• advance care planning
• patient autonomy
• long term care
• ethics consultation
• end of life

Background

Ethical dilemmas arise when healthcare providers are faced with a situation in which they are torn between competing concerns that would lead them to act in opposing ways. Each approach can seem justified by a moral rule or principle (DuVal et al. 2004). The discipline of clinical bioethics exists to address healthcare decision-making involving vulnerable persons. The practice of ethics consultation services was specifically developed to assist in resolving these disputes and dilemmas in practice. Ethics consultation, as a non-partisan service, uses a systematic consensus-building approach to help patients, families, surrogates, professionals, and other involved persons address uncertainty and resolve conflicts with value-laden issues that emerge in a healthcare setting (DuVal et al. 2004, Hoy 2005).

The most commonly cited ethical issues experienced by internal medicine physicians in the United States include concerns about patient autonomy, implementation of advance directives, conflicts with surrogate decision-makers, and end-of-life issues (DuVal et al. 2004). These topics are particularly salient in post-acute care communities, skilled nursing facilities (SNFs), hospices, and residential nursing homes where more than 40% of residents are living with Alzheimer’s and other dementias (Melekin et al. 2020). The patient-residents in these facilities, hereafter collectively referred to as long-term care facilities (LTCs), experience heightened vulnerability. Advanced age and the high prevalence of cognitive disease can impact one’s ability to autonomously consent or actively participate in care planning. It is commonplace for providers to turn to the next of kin for guidance in making decisions for an incapacitated patient, and many state laws codify the order with which related persons may serve as surrogates. Dilemmas arise when a surrogate has limited or no moral authority to make decisions for a patient lacking decision-making capacity or when a surrogate consistently requests treatments that are not medically appropriate (Kuczewski 1999, Bruce et al. 2014). In the US, surrogate concordance with a patient’s previously expressed wishes diverges in roughly one-third of cases and it is not uncommon for surrogates to project their own preference into decision-making rather than aligning with the patients’ own preferences (Fritch et al. 2013). Similar results of surrogate-patient variance and vague or incomplete medical instructions have been found in a study of proxy-completed advance directives in German nursing homes (In der Schmitten et al. 2021).

Few providers receive formal training or exposure to clinical ethics. Less than half of physicians in American medical schools receive at least some ethics trainings while 22% never receive any training in ethics as undergraduates, graduates, or during professional conferences/workshops (Morrison et al. 2015). This results in providers who, though capable of recognizing ethical dilemmas, often attempt to resolve these disputes on their own and seek the validation of another physician or colleague to justify their approach (DuVal et al. 2004). When neither practitioner has training or experience in bioethical conflict resolution, this approach can errantly incorporate personal or social influences into the decision-making process (Connelly and DalleMura 1988). Having access to a consultation service enables providers, patients, and surrogate decision-makers to receive ethically supportable recommendations which is an essential strategy for moving disputes and difficult care cases toward resolution (Orr and Shelton 2009). Case studies have found that the role of trained consultants can build trust, increase feelings of freedom for patient-residents in line with their expressed preferences, and affirm that staff can identify morally relevant care considerations (Magelssen and Karlsen 2021).

It has been suggested that a functional ethics consultation service reduces moral distress and staff turnover by contributing to a more positive ethical climate (Tarzian 2013). Moral distress accumulates when providers perceive a violation of their core values and duties concurrent with feelings of being constrained from taking ethically appropriate action. This is relevant to LTCs as moral distress can be particularly acute when providing care at the end of life (Epstein and Hamric 2009, Hiler et al. 2018).

The majority of ethics consultation research comes from within the hospital setting, although there is some literature on the benefits of ethics consultation services in a non-hospital nursing home and LTC context (Holmes et al. 2020). More research is warranted on provider awareness of and willingness to engage with ethics services in the LTC setting during difficult patient decision-making cases and patient-family conflicts. We sought to identify the frequency and nature of patient care and decision-making conflicts that arise in the long-term care setting, the current strategies to address or mediate these dilemmas, and the use of ethics resources to assist with dispute resolution.

Materials and methods

Survey responses were anonymous and respondents provided informed consent. The 66-question survey tool was distributed via email to the entire membership of The Society for Post-Acute and Long-Term Care Medicine (AMDA). Respondents were limited to administrators, clinical practitioners, medical directors, and chief medical officers of long-term care facilities based in the United States. The total responses to each survey question varied. There were 14 conditional questions which were only presented to a respondent based on their answer to a preceding question. Twenty-five questions were optional and could be skipped if the topic was not relevant to the respondent’s facility or practice. Respondents could decline to continue completing the survey at any point.

Results

Practitioner and facility information

We received 291 survey responses and 138 respondents proceeded to complete the full questionnaire based on their primary professional role meeting eligibility criteria (response rate 7.16%). Respondent and LTC facility characteristics are outlined in Tables 1 and 2. Seventy-eight percent practice in a clinical capacity (n = 108). The median bed count was 179 (range 24–500) and an average of 40.85% of patient-residents in the LTCs have some form of dementia (range 0–98%). All respondents are members of AMDA. Of the 88 respondents (64.23%) reporting additional professional organization membership, two were also members of the American Society for Bioethics and Humanities (ASBH). No other involvement in professional ethics organizations at the state or national level was reported. Respondents were given the option via a free-text box to describe their professional practice including board certifications, additional trainings, or professional certificates. No ethics educational degrees nor professional ethics trainings, such as the Healthcare Ethics Consultant Certification (HEC-C), were reported by any respondent. One respondent reported a prior history of serving on a hospital ethics committee.

Table 1. Survey respondent characteristics.

Primary Professional Role (n = 138)	n	%
Medical Director	86	62.32
Clinical Practitioner	45	32.61
Administrator	5	3.62
Medical Officer	2	1.45

Table 2. Facility characteristics.

Facility Type (n = 132)	n	%
Skilled Nursing Facility (SNF)	73	55.30
Full Continuum of Care	34	25.76
Long Term Post-Acute Care	20	15.15
Assisted Living	5	3.79
Funding Structure (n = 132)
For-profit	69	52.27
Non-profit	49	37.12
Other	9	6.82
Municipally-owned	5	3.79
Religious Affiliation (n = 128)
Secular	98	76.56
Faith-based	24	18.75
Other	6	4.69

Managing family conflict

Respondents frequently experienced a diverse range of conflicts that occurred between patients, staff, family members, and surrogate decision-makers. The most common challenges faced in caring for patients at the end-of-life were family or surrogate conflicts over treatment/care decisions (39.05%) and issues with interpreting advance directives (25.44%). Seventy-four respondents felt that having more clarity from patients or their family on care wishes in advance would assist their facility in managing end-of-life issues for patients with dementia.

Although 86.59% of facilities (n = 71/82) have a specific practice or procedure regarding assisted feeding for patients with dementia, 71.23% (n = 52/73) of respondents still experienced scenarios which required them to manage family conflict around the provision of nutrition and hydration to a patient.

Dispute mediation in clinical practice

Two-third of respondents (63.38%; n = 45/71) reported having had to reject instructions from a surrogate because they were inconsistent with a patient’s previously-documented wishes. Only half of respondents (55.56%; n = 40/72) work in institutions with an official mediation policy for navigating disputes between a patient’s previously expressed wishes and the decisions of their surrogates. Dispute mediation policies were predominately at secular facilities (77.5%; n = 31; p = 0.8) and SNFs (62.5%; n = 25; p = 0.03). Full continuum of care facilities were the least likely to have a policy for resolving patient-surrogate disputes. There was no significant relationship between bed size and whether a facility has a dispute mediation policy.

Within the LTC facilities with an official dispute mediation policy, 80% of respondents (n = 32/40) have had to make use of their institution’s policy in the last few years. Institutional mediation policies were employed on average of two times (range 0–30) while 16.67% (n = 5) were used ≥ 6 times (Table 3). Four respondents (10.0%), all from skilled nursing facilities, reported never using their facility’s available mediation policy.

Table 3. Facility demographics for high-volume use of mediation policy.

	Rate of Mediation Policy Use	Type of Facility	Group Association	Funding Structure	Religious Affiliation	Bed Size
Facility A	25–30 times	SNF^⸸	Independent Facility	For profit facility, publicly traded, or privately held	Secular	81–160
Facility B	10 times	Assisted Living	National Chain	Non-profit	Secular	81–160
Facility C	6 times	Full continuum of care	Independent Facility	Non-profit	Faith-based	161–240
Facility D	5 −10 /year	SNF	Independent Facility	Other, NOS*	Other, NOS	< 80
Facility E	2–5 /year	Full continuum of care	National Chain	Non-profit	Secular	> 321

^⸸ SNF = skilled nursing facility.

* NOS = not otherwise specified.

Of the 39 respondents who provided additional detailed information about their institution’s dispute mediation policy, 35.89% (n = 14) of policies included use of an ethics committee or an ethics consultation. When describing how actual patient-surrogate conflicts and care planning disputes have been approached and/or resolved, only 10.0% (n = 5) of providers have actually requested an ethics consult when previously managing or attempting to resolve patient-surrogate conflicts and care planning disputes (Table 4). It was not common for policies to instruct staff to immediately consult legal counsel or go to court in the event of a care conflict dispute (8.0%, n = 4). The most common theme among mediation policies was for staff to have a goals of care discussion or a care planning conference with the family, facility staff, and the patient, if possible (58.0%, n = 29).

Table 4. Facility demographics for use of an ethics consult during disputes regarding patient vs. surrogate wishes.

	Type of Facility	Group Association	Funding Structure	Religious Affiliation	Bed Size
Facility 1	Full continuum of care	Independent Facility	Non-profit	Faith-based	161–240
Facility 2	Full continuum of care	Independent Facility	Non-profit	Secular	< 80
Facility 3	Full continuum of care	Regional Chain	For profit facility, publicly traded, or privately held	Secular	81–160
Facility 4	SNF	Regional Chain	For profit facility, publicly traded, or privately held	Secular	81–160
Facility 5	Long-term post-acute care	Academic Medical Center	Non-profit	Secular	< 80

Discussion and recommendations

This study demonstrates that there is great opportunity for increased ethics integration into LTCs. Over seventy percent of providers have had to manage family, surrogate, and decision-making conflict particularly around end-of-life issues despite only half of facilities having a formal policy that providers can utilize for dispute mediation. There was high policy utilization (80.0%) when these resources were made available to staff. SNFs were most likely to have a mediation policy, but also less likely to report having had to employ such policies. Disputes between patients and surrogates likely represents a rare problem in SNFs, independent living facilities, or assisted living facilities, as residents have low health instability and are generally cognitively intact (Riester et al. 2022). This should not be interpreted to mean that such facilities would not benefit from the establishment of clear policies and standard operating procedures. Patients can experience newly diminished or wavering capacity, or become temporarily incapacitated, at any time. This is exemplified by assisted living Facility B which has employed their dispute mediation policy a non-insignificant ten times over twenty years (Table 3).

First, it is recommended that all long-term care facilities have robust policies and procedures in place for resolving care disputes. All providers should have access to clear instructions for how to navigate difficult decision-making scenarios when a patient-resident is incapacitated or incompetent regarding specific decisions, or where there is surrogate-patient discordance. Staff should be regularly trained on these policies.

It has been suggested that trainings also include programming that prepares surrogates themselves to be equipped to make proxy medical decisions for their loved ones (Cohen and DeMartino 2021). The design of such interventions and whether they produce outcomes that are medically and ethically sound remains an interesting area for future research. Early involvement of surrogates is an approach best undertaken in the outpatient primary care or geriatrician setting before patients present to LTCs with dementias and other advanced health conditions, which was the focus of this survey.

Second, LTCs should be able to access an ethics consultation service or an ethics committee for trained support in navigating and offering solutions to persistent ethical dilemmas. Most dispute mediation policies instruct staff to have either a goals of care discussion or a care planning conference. Goals of care discussions are a reasonable initial step but will often prove insufficient. Intra-familial conflicts as well as conflict between staff and surrogates can include disagreements or uncertainties about competency/decisional capacity, benefits/burdens of treatment, resource allocation, value expectations, mistrust, suffering, and spirituality needs (Swetz et al. 2007, Wasson et al. 2016). Variations in these beliefs and inferences about the motives of other parties can lead to intractable conflicts (Kuczewski 2019). Goals of care discussions will prove ineffective when those involved cannot take on a neutral perspective or lack sufficient training in techniques to facilitate effective communication among parties. Goals of care meetings can be inefficient or even inadvertently harmful if they are poorly led, incomplete, or present inaccurate information (Fox et al. 2006).

One respondent described their facility’s dispute mediation policy as having ‘continued discussion until decision [is] made’ while another respondent described that their policy is for staff and families to ‘sit down and thrash it out.’ Although the latter was more glib, these responses among others demonstrate the common perception that goals of care discussions should proceed until a singular conclusion is reached. This approach fails to give due consideration to whether a singular outcome is respectful to all parties, or whether the process is legally and ethically supportable. When the goal is a consensus decision, the mediation process may disadvantage one party’s interest over the other in order to reach a final conclusion. Ethics consultation by contrast does not require the pure consensus approach of classic mediation techniques.

Ethics consultants alternatively may assist the involved parties to see that there is more than one ethical course of action or that no consensus can be reached and additional meetings and information may be necessary to move the consult forward. When intractable conflicts arise or no agreement between parties can be reached, ethics facilitation is a demonstrated response to mediate these conflicts by identifying possible resolutions and ensuring that, if a consensus is reached, it is ethically justifiable (Tarzian 2013). This process provides the opportunity for all parties to express their thoughts and feel respected, which can dissolve previously intractable or contentious conflicts (Kuczewski 2019). Trained ethics consultants can help elucidate issues, aid in effective communication strategies, and integrate the perspective of relevant stakeholders to identify a plan that is within accepted ethical and legal parameters (ASBH 2011).

Increasing the availability of ethics services in LTCs need not be difficult. Many LTC facilities are affiliated with hospitals or larger care networks which staff ethics consultation services (Fox et al. 2022). Ethics services can also be incorporated into community-based care structures through hospital partnerships and liaison relationships (Hoy 2005). Ethics consultants typically collect data to characterize and quantify the common themes experienced among care conflicts. This can enable healthcare facilities to identify areas in which they would benefit from proactive interventions, serving to reduce the overall incidence of recurrent conflicts (Hester and Schonfeld 2012). LTCs with high volumes of existing ethics consults (see Tables 3 and 4) should consider publishing case reviews of their consults. This supplement to the broader ethics literature, which is primarily saturated with in-hospital clinical case studies, would highlight and encourage further discussion of the unique components of dispute resolution specific to the long-term care setting. Other LTCs can utilize this information to host quality-based reviews of their own existing policies and procedures as well as highlight areas where staff would most benefit from additional support and trainings.

Third, LTCs should support the individual growth and development of all staff through continuing education and professional association membership. We anticipate that ethics integration would be welcome in many facilities. Twenty-five respondents indicated an interest in ethics-focused training sessions at their facility such as how to implement and respect advance directives. This equips staff to confidently and ethically respond when future conflicts or disputes arise.

Practitioners in patient-facing clinical care roles can take a proactive individual approach to improve their own capabilities. One method of achieving this is through engagement in professional organizations and continuing educational trainings. Professional association membership benefits practitioners by continuing the growth of one’s knowledge base, enhancing career development, supporting skill-building, and providing professional networking opportunities (Mata et al. 2010, Cline et al. 2019). The National Bioethics Advisory Commission (2001) recommends that professional societies include topics like ethics in their continuing education programmes. All respondents to this survey study currently participate in at least one professional organization and their willingness to consent to research in their field of practice demonstrates a communally held desire to learn, develop, and improve field-specific practices. This dedication to individual professional growth can readily be expanded into broader bioethics involvement.

Limitations

This survey was conducted anonymously. Information on geographic location, IP address, and medical system affiliation was not collected so that respondents and their facilities could not be retrospectively identified. As a result, this study could not confirm or refute whether long-term care facilities exhibit similar trends identified in prior research that urban location and academic affiliation are associated with greater ethics dilemmas and use of ethics consults (DuVal et al. 2004, Fox and Duke 2021).

The response rate to this survey was lower than other survey studies of medical directors (Williams et al. 2021). Although the survey link was provided via email to all individuals with AMDA membership, eligibility to complete the survey was limited based on professional role. When joining AMDA, members are not required to list their professional role such as Medical Director or Administrator. It was therefore not possible to calculate a response rate specific to those with an eligible primary professional role (Table 1) apart from all members who received the survey link. Responses came only from providers in the United States and may not be reflective of care experiences, ethics services, or medical education in other countries. Additionally, this survey was administered during the third wave peak of the COVID-19 pandemic. The authors theorize this contributed to the low response rate as clinical practitioners were navigating increased caseloads.

Conclusion

The results of this survey demonstrate that there is significant opportunity for increased ethics integration outside of hospitals in the long-term care environment to support patients and staff. The majority of respondents have had to manage conflicts regarding patient care and treatment decisions, particularly at the end of life. Few facilities incorporate ethics services into their dispute mediation policies and even fewer practitioners utilize the ethics resources that are available to them. In this article, we explore the opportunity for greater ethics integration into the long-term care facility setting in the form of greater policy development, incorporation of ethics consultation services, and encouragement of personal skill development through professional ethics organization involvement.

Acknowledgements

The authors thank Rachel F. Bloom and Katherine Hendley for their research assistance and contributions.

Disclosure statement

No potential conflicts of interest are reported by the authors.

Additional information

Funding

This work was funded by the Columbia University School of Professional Studies FY20 Dean's Applied Research Award and a grant from The Completed Life Initiative.

Notes on contributors

David N. Hoffman

David N. Hoffman is a healthcare lawyer and clinical ethicist. He is an assistant professor of bioethics at Columbia University.

Gianna R. Strand

Gianna R. Strand is a post-doctoral faculty teaching associate in bioethics at Columbia University. Both authors are members of the Empire State Bioethics Consortium.