Patient Rights Eroded as Pendulum Swings to More Rights for Institutions

This important discussion highlights the ways in which faith-based institutions impose religious value based treatment decisions on doctors and patients. Most often, patients enter faith-based institutions without any idea that the institution is bound by Ethical Rights Directives which can prohibit participation in Medical Aid in Dying and other procedures the institution does not condone.

Click here to view the video discussion about the erosion of patient rights.

With all of the mergers and acquisitions, faith-based institutions constitute about 20% of U.S. healthcare institutions. In some rural areas these institutions 100% of the institutions are faith-based.

What many patients do not realize about MAiD is the many obstacles that can arise during the legally required process of obtaining MAiD. Each obstacle increases the length of time required to get approval; increasing the chances that the patient can progress into a “lack of capacity” state where they will no longer qualify for MAiD and will not be able to achieve their goal of a peaceful death.

A big mistake many patients make is waiting until they are “ready” for MAiD.

It is always too early, until it is too late.

Geriatrician Barbara Morris relates the case of her abrupt firing from a Colorado Centura Health System when she co-filed a legal case with her patient challenging Centura’s right to prohibit her from providing MAiD. 400 patients abruptly lost their physician. Her patient with GI cancer had asked his oncologist for MAiD. The oncologist not only refused the request, but did not record it in the patient’s medical record.

The Colorado MAiD statute requires institutions to disclose if they opt-out of MAiD. Dr. Morris had many patients who were not aware of the opt-out provision. Centura’s method was to bury that information in the consent to treat form. Let’s get in the habit of reading these things folks !

Professor Thaddeus Pope, who specializes in end-of-life law, highlights some disturbing trends that effect patient access/safety. As the Cititzen’s United case illustrated, entities, over individuals, have been gaining rights at individuals’ expense. There are growing challenges to the traditional way in which conscience-based rights of clinicians and entities have been balanced against patient rights.
Professor Pope believes that informed consent should dictate that patients be informed which institutions are guided by faith-based religious doctrine. He notes that courts generally have applied informed consent in relation to management of risk. He tells us that in general, Ethical and Religious Directives (ERD’s) that apply to all Catholic institutions (like Dignity Health) require that the new partner resulting from a merger, acquisition, or affiliation must be compliant with the ERD’s.

Dr. Lonny Shavelson, Medical Aid in dying Provider and co-founder of the American Clinicians Academy on Medical Aid in Dying (ACAMAID) describes how patients often do not ask for MAiD until they are well along in the dying process. Many are surprised to discover they are in a hospice run by a faith-based institution that prohibits MAiD. This illustrates the importance of asking the right questions before selecting a hospice.

Who Owns your Medical Records?

Professor Pope explained the recent challenge to New Jersey’s MAiD law. Faith-based institutions objected to the statute requiring them to transfer medical records when a patient finds a clinician willing to participate in MAiD. The faith-based institutions do not think they should be required to transfer the records – they say it makes them complicit in the act. They lost this challenge; but the decision will be appealed.

Dr. Shavelson notes that he has encountered many cases of faith-based hospices who have opted out of MAiD refusing to transfer medical records of a patient who has requested MAiD. One time an institution said they weren’t permitted to even use the fax machine to send the records. These delays can “stack up” and interfere with patient access to MAiD.

Every delay puts the patient at risk of not achieving their goal of a peaceful death.
-Lonny Shavelson

View the New England Journal of Medicine paper “Hospital Mergers and Conscience-Based Objections — Growing Threats to Access and Quality of Care“