Article Text

‘If you build it, they will come…to the wrong door: evaluating patient and caregiver-initiated ethics consultations via a patient portal’
  1. Liz Blackler1,
  2. Amy E Scharf1,
  3. Konstantina Matsoukas1,2,
  4. Michelle Colletti1,3 and
  5. Louis P Voigt1,4
  1. 1Ethics Committee, Memorial Sloan Kettering Cancer Center, New York, New York, USA
  2. 2Technology Division, Library Services, Memorial Sloan Kettering Cancer Center, New York, New York, USA
  3. 3Department of Surgery, Memorial Sloan Kettering Cancer Center, New York, New York, USA
  4. 4Department of Anesthesiology, Pain, and Critical Care Medicine, Memorial Sloan Kettering Cancer Center, New York, New York, USA
  1. Correspondence to Ms Liz Blackler; blacklel{at}mskcc.org

Abstract

Objectives Memorial Sloan Kettering Cancer Center (MSK) sought to empower patients and caregivers to be more proactive in requesting ethics consultations.

Methods Functionality was developed on MSK’s electronic patient portal that allowed patients and/or caregivers to request ethics consultations. The Ethics Consultation Service (ECS) responded to all requests, which were documented and analysed.

Results Of the 74 requests made through the portal, only one fell under the purview of the ECS. The others were primarily requests for assistance with coordinating clinical care, hospital resources or frustrations with the hospital or clinical team.

Discussion To better empower patients and caregivers to engage Ethics, healthcare organisations and ECSs must first provide them with accessible, understandable and iterative educational resources.

Conclusion After 19.5 months, the ‘Request Ethics Consultation’ functionality on the patient portal was suspended. Developing resources on the role of Ethics for our patients and caregivers remains a priority.

  • Health Literacy
  • Patient-Centered Care
  • Patient Involvement
  • Medical Informatics

Data availability statement

All data relevant to the study are included in the article or uploaded as supplementary information.

http://creativecommons.org/licenses/by-nc/4.0/

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Introduction

Clinical ethics consultation services exist to support patients, families, clinicians and hospital administrators who are facing ethical or moral challenges related to patient care. Patients are the common denominators in most ethics consultations.1 However, in the USA in general and our institution specifically, ethics consultations are overwhelmingly requested by physicians and other clinicians.2–5 In our 2021 BMJ Journal of Medical Ethics article ‘Call to action: empowering patients and families to initiate clinical ethics consultations,’ we hypothesised on the reasons for this trend and the many potential benefits that reversing this phenomenon could impart to patients, families, clinicians and entire institutions.6

In January 2022, Memorial Sloan Kettering Cancer Center (MSK) launched a programme to enable patients/caregivers to request ethics consultations through our electronic patient portal. Previously, they could only do so by telephone, while MSK staff could request consultations either through an electronic health record order or by telephone.7 In this Implementer Report, we describe how the patient portal-initiated ethics consult programme was designed, implemented and received by patients, caregivers, and MSK staff.

Methods

MSK’s Ethics Committee (EC) and Digital Informatics & Technology Solutions developed functionality on MSK’s secure electronic patient portal that allowed patients or their designated caregivers to learn about the Ethics Consultation Service (ECS) and then submit a request for an ethics consultation by briefly explaining their ‘reason for consult.’ Portal secure messages alerted the EC leadership about each request, providing the requestor’s name, contact information, relationship to patient and reason for request. The EC leadership contacted requestors by the end of the next business day, assessed their needs, addressed any concerns and facilitated appropriate next steps and referrals. The ECS documented all requests, relevant data and remediation processes. Anticipating that there would likely be requests outside the scope of clinical ethics, the EC leadership met with Directors of Case Management, Patient Financial Services, Patient Representative/Advocate and Social Work in advance of the launch to secure their support and identify pathways for assistance.

A ‘Request Consultation’ functionality was added to the patient portal directly below the two already-existing Ethics Committee references on the ‘My Resources’ and ‘Support Services’ pages (figure 1). When users clicked on the ‘Request Consultation’ link, they were directed to a new page where they were asked to provide their name, contact information and reason for consultation request (online supplemental file 1).

Supplemental material

Figure 1

Ethics consultation requests on the patient portal.

The ‘My Resources’ page included a one-sentence description of the EC: ‘Our Ethics Committee can help you answer questions or resolve disagreements or conflicts about your healthcare plan or treatment choices.’ The portal’s space constraints precluded our providing additional information about the EC or ECS, and therefore, we created a hyperlink from ‘Ethics Committee’ that took users to the EC page on MSK’s public, external-facing website—https://www.mskcc.org/experience/patient-support/ethics-msk . These pages provide comprehensive information on our EC and ECS, including both written and video content explaining what we do and the circumstances/events for which it is appropriate—and even recommended—for patients or caregivers to request an ethics consultation. However, our external website does not allow users to request an ethics consultation. For this, patients and caregivers must return to the patient portal.

Results

Between January 2022 and September 2023 (19.5 months), 74 requests were made through the patient portal, with 62% (n=46) originating from patients and 38% (n=28) from caregivers. 93 (93%) (n=69) of requests were for patients being treated in the out-patient setting.

Of the 74 ethics consultation requests, only one was for assistance with an issue that fell under the customary scope of our ECS—the need to facilitate a goals of care discussion between the spouse of an incapacitated patient admitted to the intensive care unit and the clinical team (online supplemental file 2). The remaining 73 requests (98%) were for assistance with issues that Ethics Consultants are not trained to address or remediate. These requests fell into five major categories:

Supplemental material

  1. Assistance in coordinating clinical care: 33% (n=24), such as appointment scheduling, symptom management and treatment decision-making.

  2. Complaints about hospital processes or systems: 27% (n=20) including frustrations with scheduling delays, securing information and guidance, and receiving return phone calls.

  3. Frustrations about the clinical team: 19% (n=14), where patients/caregivers reported dissatisfaction with one or more of their care providers, and/or requested transfers of care.

  4. Requests for hospital resources: 12% (n=9), including assistance with billing, travel/local accommodations, and referrals for emotional support and home care and/or hospice services.

  5. The remaining 9% of requests involved non-specific concerns, for which the consultant offered active listening and emotional support (n=4) and/or general guidance (n=3).

In responding to these 73 requests, Ethics Consultants referred 56% (n=41) to MSK’s Patient Representative Department, which is tasked with addressing patient and caregiver concerns. The 24 requests (33%) regarding treatment and symptom management were referred to the patient’s primary service. The remaining eight requests (11%) prompted Ethics Consultants to offer patients and caregivers direct educational and psychosocial support but required no additional referrals.

Discussion

We continue to maintain that patients and caregivers should be empowered to take a more proactive role in requesting ethics consultations. But as our 19.5-month experience demonstrated, solely providing them with a technological platform is not sufficient. Of the 74 consultation requests, 73 did not address ‘ethical’ issues, illustrating patients’ and caregivers’ limited understanding of the ‘jurisdictions’ of ECs and ECSs. Healthcare organisations and ECs must provide patients and caregivers with accessible, understandable, and iterative resources and education on ECs and ECSs so they can appropriately use a ‘Request Ethics Consultation’ portal function to address concerns and challenges that are truly ethical in nature and within the purview of an ECS. Space constraints on our organisation’s patient platform severely limited the amount of information we are able to include about our services.

Patients and caregivers should not be held responsible for incorrectly requesting assistance on issues that fall outside the expertise of the ECS. They were confronting physically and emotionally stressful periods of their lives and a complex healthcare system. We should not expect them to intuitively understand the roles and responsibilities of the ECS. We surmise that patients and caregivers contacted us through the patient portal for two primary, interrelated reasons. First, many may have perceived that their questions, experiences and complaints were ‘ethical’ in nature, given their perceptions that they felt ‘wronged,’ ‘not heard’ or ‘not supported’ by members of the clinical teams. These perceptions may have been reinforced by what we now recognise was an overly vague explanation of the Ethics Committee on the patient portal, which may have been misinterpreted. Second, the ethics patient portal presented an ‘actionable’ and technologically expedient platform to document their concerns and receive a timely response.

This need for enhanced understanding of the role of the ECS within an institution is not without precedent. Over the past 7 years, the EC at MSK has undertaken multiple, overlapping staff educational programmes to raise awareness and increased comfort with the role, function and potential contributions of the EC and ECS to patient care. The multipronged endeavours have resulted in a steady increase in the number and variety of ethics consultations and may serve as models for programmes geared toward patients and caregivers. We acknowledge the significant resources that such education would demand, particularly for an ever-changing cohort of patients and families.

The difficult decision to suspend this functionality on the patient portal

Recognising the limitations of this initiative, EC leadership deliberated over continuing the patient portal consultation functionality (while making adjustments where possible) or suspending it and focusing on ethics-related resources and programing for patients and caregivers. We recognised that the 73 ‘non-ethics’ requests were relevant, in that they reflected existing gaps in communication between patients/caregivers and their providers, and that the ECS did provide patients and caregivers with an avenue for having their concerns acknowledged and potentially addressed. Our ultimate decision to suspend the patient portal functionality was based on two primary considerations:

  • First, we concluded that comprehensive educational resources for patients and caregivers about the EC and ECS was a prerequisite to a successful presence on the patient portal. Our efforts would require designing multifaceted and iterative programmes in conjunction with multiple institutional stakeholders, including our Patient and Family Advisory Committee for Quality.

  • Second, we were confident that we were not leaving our patients and caregivers without access to the supports that they needed. The majority of issues that had been raised with Ethics were best addressed by other institutional services, primarily Patient Representative and the patients’ own clinical care teams—all of which are accessible through the patient portal. Our patients and caregivers are comfortable using the hospital’s patient portal (approximately 80% of MSK patients are subscribed, and the portal receives 6000–8000 messages daily from 200 000 active users). Patient Representative receives approximately 10–15 messages per day from patients and caregivers. Moreover, our institution’s EC and Patient Representative Department have a longstanding and collaborative relationship, and we continue to work together when issues arise that are relevant to both our services.

It is important to note that decision to suspend Ethics Consultation requests on the patient portal did NOT leave patients and caregivers without the means to request ethics consultations. Our public-facing site prominently displays our ECS phone number, which is available 24/7 for all constituents.

Limitations

Implementing and maintaining this programme required a meaningful dedication of time and resources by both the ECS and other interdisciplinary teams, particularly Patient Representative. The ECS was committed to responding to all requests by the end of the next business day and to appropriately document referrals of consult requests to relevant institutional services. Not all institutions have the resources to staff such an endeavour, especially in the setting of a large and active ethics consultation workflow.

Finally, we are fortunate that our colleagues within other institutional services were receptive to our calls and emails about, and quickly and professionally assumed responsibility for the relevant issues that patients and caregivers raised. We recognise that at other institutions, these professional relationships may not be well-established or work as seamlessly.

Conclusion

After 19.5 months, the Ethics leadership made the difficult decision to suspend the ‘Request Ethics Consultation’ functionality on the patient portal. We nevertheless remain committed to empowering patients and caregivers to access our services. To achieve such a lofty goal, MSK and the EC leadership must provide patients and caregivers with sufficient and ongoing education and support that helps them understand the mission, benefits and limitations of the clinical ethics consultation process. We are currently working with other services within our institution to (a) address the institutional deficiencies related to care coordination, delays in returning phone calls and complaints about providers; (b) provide patients and caregivers with a sustained and robust programme aimed at enhancing their understanding of the ethics consultation process.

Data availability statement

All data relevant to the study are included in the article or uploaded as supplementary information.

Ethics statements

Patient consent for publication

Ethics approval

Not applicable.

Acknowledgments

The authors thank Memorial Sloan Kettering’s Digital Informatics & Technology Solutions (DigITs) team and Rozina Merchant for her support and oversight of the Patient Portal build. We also thank Claire Murray for her tireless efforts collecting and maintaining the Ethics Consultation database.

References

Supplementary materials

  • Supplementary Data

    This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.

Footnotes

  • Contributors All authors contributed equally.

  • Funding This work was supported by the Ethics Committee at Memorial Sloan Kettering Cancer Center and by the National Institutes of Health Core Grant P30 CA008748 to Memorial Sloan Kettering Cancer Centre, New York, NY, USA.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.