Where is the Patient in Bioethics?

Where is the Patientin Bioethics? Sue MacRae Deputy Director Shawn Tracy Research Associate

Overview • definition of clinical ethics • case scenario • current models • PEECE project • future directions

Definition of clinical ethics • to improve the quality of patient care by identifying, analyzing, and attempting to resolve the ethical problems that arise in the practice of medicine • starting point for ethical analysis is the encounter between patient and health care provider • the process and outcome of patient care is improved by acknowledging and respecting patient’s preferences/values and by empowering patients to make decisions based on their personal health care goals > Siegler, Pellegrino, & Singer (1990)

The case of Mr. X A 35 year old man (husband & father of 3 children) was admitted to ICU 3 days ago from another hospital after a “medical error” that left him unconscious. One week earlier he had walked into the ER without any previous medical history. The ICU doctor calls the bioethicist and says “why don’t you drop by for a visit”. The ethicist finds the ICU staff waiting and is told the team wants to discontinue ventilation because “we have no beds and this guy is toast.” The family disagrees so the staff want to invoke the DNR policy and unilaterally discontinue further treatment. The ethicist looks in the room and sees Mr. X’s family gathered at his bedside praying.

If there were no consequences and you could follow your conscience… what would you do??

What is the bioethicist’s role in relationship to patients? • resource? • support? • advocate? • do nothing because ethicists shouldn’t be at the bedside anyway?

Patient Views on Ethics Involvement

“The ultimate task of ethics is not to mediate day-to-day conflicts sufficiently to keep the operation running; the ethical task is leading people--whether they provide care or receive it--to recognize what they are doing to their lives over a much longer term.” Arthur Frank

“There seemed to be an insistence at Sloan-Kettering, I told them, on the validity of a series of equations that held that, if an individual’s needs exceed what the institution can comfortably provide, then that individual’s needs must therefore be excessive; that whatever level of care the institution is capable of must be adequate, and, therefore, if that care is not good enough, then the patient is unsalvageable.” Evan Handler, Time on Fire

PEECE project Three primary objectives: • to examine the services, structures, and activities of 9 clinical ethics services from U of T affiliated hospitals • to identify specific policies, processes, and practices stakeholders define as effective • to investigate stakeholders’ views on clinical ethics, specifically the issue of effectiveness

Stakeholder groups • clinical ethicists • senior managers • ethics committee members • health care professionals • patients/families

“So the role (of a bioethicist) is mostly with respect to research and they don’t have as much of a clinical role. So, they’re perceived as people that deal with these abstract issues and maybe publish….So another barrier essentially (to effectivenss) is not participating clinically enough.”

“I didn’t know I had access to the ethics service at all, but it gave me a great deal of comfort that I had that presence.”

“If they are not visible, if they are not working with the patients, they will be on the chopping block. The clinical role cannot be neglected because then they’re invisible.”

“I perceived the role as educational and I was hoping for support overall. The ethics dept should have some teeth to assist all the parties in understanding the nature of the situation.”

“My perception was that I did not have a strong enough voice in discussing my daughter’s condition and participating in decision making around her case. So I felt I needed an advocate because I just couldn’t get through.”

“I think that they’re there to help the patient. I mean, that’s what their job is all about and that’s what their life is all about.”

“The neutral role would be wonderful because it is only fair, but it just seems to me that because of the political climate in hospitals, in reality, that might not be feasible. Theoretically, it sounds great, but it seems to me there are other pressures, financial pressures.”

“The ethics department was absolutely instrumental, I don’t know what I would do without them, to tell you the truth… They were absolutely indispensable.”

“I’m very glad that this service is in place because without it I think that it’s extremely difficult and there will be a lot of anxiety and uncertainty.”

Patients want an ethics service that is: • visible and available to them • “has some teeth” • conscious of best interests of patients

Commonly-held view • bioethicists should not work directly with patients and families • should instead work with health care professionals to help them become more ethical in their practice

Is there a moral foundation to support this approach?

The Physician’s Convenant to the The Patient’s Ordeal “Some 13 years later while rereading my field notes from that year, I realize how readily I adopted the doctor’s angle of vision on the hospital scene. I focused largely on the doctor’s practice rather than on the patient’s sense of medical crisis. My own personal focus on the doctor larger reflected and repeated the broader preoccupation of the field of ethics. William May, 1991

The problem “Ethicists have flooded practitioners with elegant advice on such issues as informed consent, genetic screening, and organ transplants... But they have provided less insight for practitioners and lay people about the patient’s ordeal. Insight into the patient’s troubles usually comes from a very different source, not from the professional ethicist.” > William May, The Patient’s Ordeal (1991)

Quality in Science and Suffering “From the early 1900s, medical practitioners have searched for ways to reconcile the unique, subjective, and qualitative characteristics of sickness with the rationalistic, objective, and categorical demands of medical science.” > Margaret Gerteis et al., Through the Patient’s Eyes (1993)

The Medical Model Decision to seek care Information collection Diagnosis Treatment Rehabilitation Follow-up • 2 slides adapted from work by Dave Gustofson, PhD • University of Madison.

The Human Model Future Symptoms Self Image Feelings Providers Treatment Process Family & Friends Physical Environment

universalism neutrality autonomy of practice altruism social & economic power control exclusive ownership of knowledge economic reward status enhancement Friedson, Mckinlay, Abbott, Foucault From Scott Reeve’s seminar: Ideal versus Reality Among Professional Practice

HCPs and patients disagree about underlying assumptions of quality of life ... Gerhart, KA, et al. Annals of Emergency Medicine 23:4 April 1994 • “Glad to be alive” • Emergency medical providers 18% • Person with chronic quadriplegia 92% • “QOL average to above average • Emergency medical providers 17% • Persons with chronic quadriplegia 86%

Future?

Are we, in bioethics, balanced?

Where do we begin to seek the solution?

“There are good ethical arguments, and broad public support, for the idea that organisational employees ought to exercise their own judgment and follow their own conscience, even when doing so requires action that is at odds with the goals or actions of organisational managers. Ideally, managers of HCOs should cultivate and encourage an open and honest exchange of ideas and views, such that employees, including ethicists, will not feel that they face dilemmas regarding whether to defer to a decision taken by management, on one hand, or follow their own conscience, on the other.” CBS working conditons group Working conditions?

A Senior Physician 2001 • “At no time in my job does anyone reward me for being a “good” doctor, you know really being there for people…….In fact most of what is expected of me, pulls me far away from patients-- and then I am left in the middle of the night with my own conscience to decide what to do with that. In the end everyone loses.”

We’re funded for things that the public wishes to have. We need to educate patients about the importance of ethics so that the taxpayer will feel this is a worthy investment. I don’t think we’re there yet…. Until people feel this is equally important to the delivery of clinical care, it’s not likely to get expanded. Senior Manager

Returning bioethics to the clinic “The job of the clinician… cannot be formulated in terms of broad principles, bioethical or otherwise, but only as a series of practical tasks. These tasks include settling upon the most appropriate way to approach the patient, talk to him, to allay his fears, and to establish the common ground on which mutual decisions can be taken.” > Paul Komesaroff, From Bioethics to Microethics (1995)

Returning bioethics to the patient • “Clinical ethics needs to address the day-to-day needs and experience of patients and families.” (Sue MacRae) • “We aren’t going to get a patient-centred system unless we get the ethics right” (senior policy advisor)

Relationship Centered Care • “The formation and maintenance of relationship in health care is morally valuable”

Principles of Relationship-Centered Care • Relationships ought to include dimensions of personhood as well as roles • Affect and emotions are important components of relationships in health care • Health care relationships occur in the context of reciprical influence • RCC has a moral foundation

Relationship-centred care Three types of relationships: • clinician-patient relationship • clinician-clinician relationship • clinician-community relationship • Self awareness

Relationship Centred Care Patient-Clinician Clinician-clinician Clinician-Community ETHICS Self awareness

Ethics CLINICIANS PATIENTS

Acknowledgements • Clinical Ethics Group • participants in the PEECE study

Where is the Patient in Bioethics?