Clinical Ethics Consultation: Responding to MAID and the Issues that Foster It

The other day out of the blue my husband asked me how recent changes in laws about medical aid in dying, otherwise known as MAID, is affecting the work of the Center for Practical Bioethics.

I responded at first by explaining that the Center maintains neutrality on morally complex issues where reasonable people may disagree about what is the right thing to do. MAID, which allows terminally ill patients to choose a “good death,” is currently authorized in the U.S. in 10 states and Washington, D.C.

The Arguments

The arguments, pro and con, for MAID are fraught and complicated.

Ethical issues against MAID include concerns about potential coercion, potential expansion of access beyond terminally ill patients, discrimination against disabled individuals, quality of palliative care access, ensuring patient autonomy and capacity, and whether healthcare providers should be obligated to participate, all while balancing the principle of respecting a patient’s right to choose with the duty to “do no harm.”

Ethical arguments in favor of MAID primarily center around respecting a patient’s autonomy to make decisions about their own end-of-life care, allowing them to avoid unnecessary suffering when facing a terminal illness, and the principle of “dying with dignity” by providing a choice to control the timing and manner of their death when faced with a grievous and irremediable medical condition.

In accordance with our mission, the Center does not take a position in favor or opposed to MAID.

Why MAID Happens

But that that doesn’t mean that we don’t routinely confront the same issues that can drive seriously ill patients to consider MAID as an option and create tremendous emotional turmoil for loved ones. Unrelenting pain and suffering. Desire for autonomy. Loss of dignity. Burden on the family.

This case illustrates how such issues can arise and how an ethicist’s clearly communicated unbiased recommendations can enable those involved to understand and accept a decision even though they may not agree with it.

Ms. Leaf was an-84 year-old female resident of the State of Washington (where MAID is legal) living alone in a long-term care facility with a terminal diagnosis of metastatic stomach cancer. She made the decision to go on hospice with ease, being fully at peace with her coming death. Her primary concern was pain and loss of self. She was very proud of who she was, what she had accomplished, and what she had done with her life. She was ready for death but wanted it to be as comfortable and with as much dignity as possible.

This is why she decided to engage with the state’s MAID program. She filled her prescription and had her dose of medication to end her life. She communicated this to Dr. Engrum, a palliative medicine provider who was treating her. She told Dr. Engrum that she planned to take the medication next Saturday, her wedding anniversary.

Dr. Engrum reached out to Ethics Services because the long-term care facility where Ms. Leaf lived had a policy against patients participating in MAID. Dr. Engrum questioned whether to allow Ms. Leaf to continue her plan against the rules and regulations of her long-term care facility. She was also concerned that she could be impacted because she knew about Ms. Leaf’s plans but did not tell the facility.

Should Dr. Engrum communicate Ms. Leaf’s intentions to the facility, per its policy, or should she keep this knowledge to herself? Ms. Leaf said that her pain was minimal and very well maintained but that she wanted the dignity of dying on her own terms.

Ethics recommended to Dr. Engrum not to communicate Ms. Leaf’s intentions to the facility and essentially allow her to go forward with her plan for MAID. Ethics’ argument was that Dr. Engrum (and the hospital team, including the ethicist) had an obligation to Ms. Leaf, not the facility that Ms. Leaf lived in (and with which the hospital had an agreement).

Communicating Ms. Leaf’s intentions to the facility would be done for the benefit of the hospital and the facility, not Ms. Leaf. Ethics maintained that Ms. Leaf’s goals of care should be the priority. This was not a statement in support of MAID but rather support of the patient’s right to autonomy and her goals of care. Legal supported this recommendation, as did Dr. Engrum, who felt she had support, understanding and clarity for the situation.

Broadening Impact

The Center’s neutrality on MAID is similar to the position we took 20 years ago with respect to stem cell research, which was controversial because it often involved destruction of human embryos.

In 2005, the Center conducted a national roundtable and published a policy brief on the fundamentals of early stem cell research and ethical arguments surrounding it. Some participants held strong views and were frustrated that the Center didn’t take sides.

Which is exactly the point. The Center’s mission, in addition to teaching and providing guidance on individual cases, was and continues to be to help people be informed consumers and voters on ethical issues in health and healthcare.

Often, our most impactful service is to decisionmakers who draft and implement policies that influence thousands or millions of healthcare encounters each year and to providers who carry forward a similar amplifying impact on patient populations.

The work of our bioethics embedded in the University of Kansas Healthcare System exemplifies this. Dr. Tarris (Terry) Rosell responded to more than 170 clinical ethics consultations last year. In turn, volunteers trained by Terry conducted their own consultations. Ultimately, the Center strives to help systems and teams mature to the point where they are preventing ethical dilemmas in the delivery of care.

The list of contentious issues in health and healthcare is thorny and growing. Abortion and reproductive health. End-of-life care. Health disparities. Vaccines. Mental health. Privacy. Insurance and cost.

Our ethicists encounter these issues and more every day. And make a difference.

By Trudi Galblum