At the recent Oncology Nursing Society (ONS) Congress in Anaheim, California, Janet Rowe, RN, and Lisa Vigil Schattinger, MSN, RN, gave a presentation about medical aid in dying and the nurse's role in supporting their terminally ill patients' rights to autonomous decision-making. In this interview with Oncology Data Advisor, Ms. Rowe and Ms. Vigil Schattinger discuss their own experiences with medical aid in dying, explain their work to spread awareness and provide education to the community, and share additional advice for nurses on how to engage patients and families in meaningful conversations about this important issue.
Lisa Vigil Schattinger, MSN, RN: I'm Lisa Vigil Schattinger. I founded a group called Ohio End of Life Options, which is a volunteer group that raises awareness about laws and advocates for a law in states without one currently.
Janet Rowe, RN: I'm Janet Rowe. I'm Lisa's mother. My husband actually used the death with dignity law through a prescription in 2014, and Lisa and I were both with him at that time. We went through the process with him, and afterward, we realized that it was such a mind-changing, amazing, peaceful death that Jack wanted, that we needed to tell people about it. I became a volunteer with advocacy groups, and I volunteer with End of Life Choices Oregon, which is a really hands-on group. We educate and support clients through the whole process, and Lisa founded a foundation to advocate for law in Ohio.
Oncology Data Advisor: Since you are both nurses and you also have the unique perspective of having a family member who used medical aid in dying, what advice do you have for families, as well as nurses, who are struggling to understand this issue?
Ms. Rowe: I think the biggest thing for us—for me as a wife—was just recognizing Jack's desire to end his life the way he wanted. It was his decision. He was very thoughtful about it. He was very concerned about how we were all affected—his family, his children, me—but it was still his death, and he was able to control it. I had to respect that. With Jack and with so many clients that I have seen over the last several years, it's just so obvious that this is what the patient wants, and they're not being coerced. It's absolutely their choice and their need, and we have to be respectful of that.
Ms. Vigil Schattinger: I've spoken to so many people, and it truly does come down to this concept that the patients have made all these medical decisions throughout their life and throughout whatever treatment and surgeries or other options pursued to this point. It's important to them to have that same decision-making ability at the end of their lives. I remember talking to a gentleman here in Ohio who knew he wouldn't have this option. He spoke out saying, "I wish I did have this option." He said, "I have done everything that I'm supposed to do. I had a great oncologist. I worked with a palliative care team. I understand that I'm facing the end of my life. I made the difficult decision to enroll in hospice. I moved closer to my family. I rebuilt those relationships that weren't necessarily strong. I moved into a senior care setting, so that I could get care if I needed it. Now I just want that one additional option to be able to say, what's my day and where do I want to be? Who do I want with me if I decide that my suffering is too great?"
We need to remember that only the person can determine what their suffering is. We don't know what that is for them. As much as we've seen and experienced with our patients, each one is an individual, and getting to know them and their values and what this means to them are part of the process of really understanding and supporting people. We really have to point out that for those who simply cannot support patients in this because of their own personal beliefs, then please have a system in place in your health system to support the patient so that they are not abandoned in their care. How do we put together a supportive system that is open with communication and knowledge and supportive of the people who want this choice and the people who opt out? We should all be able to act on our beliefs.
Ms. Vigil Schattinger: Right now, Oregon, Washington, California, Hawaii, Colorado, New Mexico, Vermont, New Jersey, Maine, and Washington, D.C. all have laws that are similarly modeled on Oregon's Death with Dignity Act that was passed in 1994. The state of Montana allows physicians to prescribe, but that was decided through a state Supreme court law, so they don't have quite the same safeguards built into it, and we don't know as much about what happens there.
Medical aid in dying laws have been known by different names over time. In Oregon, it's called the Death with Dignity Act, as well as in Washington and Maine. Other states call it an End of Life Option Act. It's been called physician-assisted death, sometimes physician-assisted suicide. The term that has really come to be over time is "medical aid in dying". It's specifically for the terminally ill. It's a law that allows a terminally ill and mentally competent person the ability to request and self-administer a prescription to hasten his or her imminent death.
It's a very patient-directed process. They are the only ones who can start the process, go through the qualification steps, and then decide if and when they actually use the medication. The person understands that they are dying, and they want to live, but they understand that they are facing the end of their days, and they want to determine how their death plays out—the where and the when and who is surrounding them when they die.
Then we thought we could talk a little bit about the law in Oregon specifically.
Ms. Rowe: In Oregon, or in the states that do have the law, you are required to be a resident or at least be present in the state when you are requesting the medication. You need an attending physician who is a prescribing physician and a consulting physician. You need those two doctors—one who is actually willing to prescribe the medication, and the second one, the consulting, only confirms that the patient has a six-month diagnosis. There is specific paperwork for both of those doctors. You have to be 18 years old. If either of those doctors questions your mental capacity to make that decision, then they can order a psychiatric evaluation, and there is third paperwork for that physician. They are confirming simply that the patient has a terminal diagnosis of six months or less.
The first request from the attending physician has to be documented in the patient's chart notes, and then the second request to the doctor must be 15 days after the first request. The patient also has to submit a written request to the prescribing doctor that has to be witnessed by two people, only one of whom can benefit from the patient's death. The witnesses have to watch the patient sign the document. They also date it and sign it, and all of those dates have to be the same day. Then the doctor has to wait 48 hours before he can write the prescription, and that is sent to the pharmacy. It cannot be given to the patient.
Once the pharmacy has it and it's filled, it can either be mailed or picked up by a designated person other than the patient. The patient can also leave the prescription at the pharmacy; they don't have to pick it up right away, and they don't have to pay for it right away. Once the patient has the prescription in hand, it's up to them to decide when to use it. Finally, the patient has to be able to ingest the medication himself, either by drinking it, by injecting it through a percutaneous endoscopic gastrostomy (PEG) tube, or by injecting it through a rectal catheter.
Ms. Vigil Schattinger: Oregon did slightly amend their law recently, and they can waive that 15-day waiting period if it's determined that the patient could be dying imminently.
Ms. Rowe: That has actually happened. That went into effect in 2020, and in 2021, there were 89 patients who used that waiver because we certainly do have clients who die within a week of when the doctor gives them their terminal diagnosis.
Ms. Vigil Schattinger: It's also important to note that physicians, pharmacists, nurses, and everyone involved as health care providers can opt-out. An interesting part of this law is that when the request is made, the patient must be counseled about all of their other end-of-life care options—palliative care and hospice care, spiritual counseling, pain management—so they're sometimes more aware of all of the care that they can be receiving at the end of life. Of course, the person can change their mind at any step of the process.
Ms. Rowe: Also, as End of Life Choices volunteers—and I know it's true of other states with volunteer organizations like ours—we work very closely with palliative care and hospice organizations and their social workers and RNs. We really encourage everyone to be in hospice care or palliative care as soon as possible. It's very, very important.
Ms. Schattinger: The data had shown that in Oregon, more than 95% people who've died using this prescription were also enrolled in hospice care. We feel that it's incredibly important that they are getting all of the quality end-of-life care they can, and we don't feel that this is an either-or type of scenario. It's getting all quality care and options at the end of life.
Oncology Data Advisor: Thank you so much for explaining all this. Since this is obviously a very complex process for nurses who are working on the floor with these patients, what should they know about medical aid in dying?
Ms. Vigil Schattinger: Right now, because of the population that lives in the states that have laws, a lot of people have access to this as an option. I don't think the issue is going away. Because of that, nursing organizations are taking the time to revisit this and make statements about it. For example, the American Nurses Association has revised their statement by putting together a statement called The Nurse's Role When a Patient Requests Medical Aid in Dying. The ONS has a statement that's called Guidelines for the Role of the Registered Nurse and Advanced Practice Registered Nurse When Hastened Death is Requested. Part of the points that they make is that because this is such an ever-changing and evolving issue, nurses must be knowledgeable about it and be able to have objective, non-judgmental conversations with our patients if a request is made.
We are also hoping to give nurses tools for those moments so that they're equipped not only with knowledge of whether they live in a state with a law and how the laws work, but how they can handle this conversation in a state that doesn't have a law. How do we skillfully navigate that moment to really ask questions: Tell me why this request or this option is important to you? What does this mean to you? What do you understand about it? How can we help understand our patients: their goals for the end of their lives, their values, their preferences, and all that affects the care that they want so that we can help get them the care that most closely aligns with their beliefs, their values, and their medical needs? Sometimes, in a state like mine that doesn't have a law, it's helping them understand resources like palliative care and hospice care and when it's appropriate to be talking to those groups.
Ms. Rowe: Because many institutions do not opt in for any medical aid in dying information, it's important for RNs to be aware of organizations like Death with Dignity or Compassion & Choices. In many states, even those that don't have laws, they do already have an end-of-life choices organization. Patients can be referred to these places, and they will give them information. They can give them the details or they can give them phone numbers to call for hands-on help, maybe the name of a clinician who would be willing to help them. For example, in Oregon, Kaiser Hospital system and Legacy Hospital system up in Portland have navigators where if a client expresses a wish or wants information about medical aid in dying, they're hooked up with a social worker and walked through the process.
Many times, systems don't have that, but the RN needs to know whether their system has that kind of situation. Are they willing to help? Where I live in Southwest Oregon, at our main oncology/hematology group, it is their policy that they will not be a prescribing physician, but they are willing to act as consulting physicians, and they can refer clients to us at End of Life Choices Oregon. We often get calls from social workers or oncology nurses or even occasionally the doctors in that practice who just want to refer their patients to us. That's really one of the main things that RNs need to know. It's time for them to pass this patient on.
Ms. Vigil Schattinger: If people just want more information, there is a group that started in California called The American Clinicians Academy for Medical Aid and Dying (ACA MAiD), and they provide continuing education about the process and the medications and the prescriptions that are used. I also really encourage nurses, if they live in a state with a law, to go onto their public health authority website and find the information about its laws. Each state has a different name. Sometimes it can be challenging to find the actual information about it, but you can download the forms in most of the states. I encourage them to do that because that's a very straightforward way to understand how the process is working in their state—just finding out real knowledge rather than perpetuating all of the misunderstanding about this process and remembering that this is a patient-directed process.
Oncology Data Advisor: Thank you so much for sharing your story and for sharing this advice.
Ms. Vigil Schattinger: You're welcome. We really appreciate the nurses who invited us to this setting to have this discussion. I think it's just so important that we start with a base level of understanding and go forward with more discussion about it.
Oncology Data Advisor: Absolutely.
About Ms. Rowe and Ms. Vigil Schattinger
Janet Rowe, RN, is a retired nurse who became a spokesperson for medical aid in dying after experiencing the medically assisted death of husband in 2014. Ms. Rowe volunteers with End of Life Choices Oregon and speaks at national conferences to spread awareness of Oregon's medical aid in dying law among the health care community.
Lisa Vigil Schattinger, MSN, RN, is the founder and Executive Director of Ohio End of Life Options, a nonprofit organization that advocates for and provides education on medical aid in dying laws. She serves on the board of the Death With Dignity National Center and speaks at national conferences regarding clinical and ethical matters related to medical aid in dying.
For More Information
Oregon Health Authority Public Health Division (2022). Oregon Death With Dignity Act: 2021 data summary. Available at: https://www.oregon.gov/oha/PH/PROVIDERPARTNERRESOURCES/EVALUATIONRESEARCH/DEATHWITHDIGNITYACT/Documents/year24.pdf
American Nurses Association (2019). The nurse's role when a patient requests medical aid in dying. Available at: https://www.nursingworld.org/~49e869/globalassets/practiceandpolicy/nursing-excellence/ana-position-statements/social-causes-and-health-care/the-nurses-role-when-a-patient-requests-medical-aid-in-dying-web-format.pdf
Oncology Nursing Society (2019). Guidelines for the role of the registered nurse and advanced practice registered nurse when hastened death is requested. Available at: https://www.ons.org/make-difference/ons-center-advocacy-and-health-policy/position-stat
Transcript edited for clarity. Any views expressed above are the speakers' own and do not necessarily reflect those of Oncology Data Advisor.