Medical Aid in Dying*
I am not the type of person who likes to put bumper stickers on my car, because I don't ever want people to judge me as I pull into the Trader Joe’s parking lot. I am already a walking 52-year-old white woman cliché -- it would likely stress me out if I had some eco-vibey bumper sticker and I forgot my reusable bags. So I don't publicize my views.
Medical Aid in Dying is mired in ethical complexity, and I hesitate to even write about it for fear of judgement or assumptions, but as a nurse, I value informed consent, patient autonomy, and patient dignity -- all ethical precepts that drive my profession and offer structure in dealing with this neither black nor white issue. Part of our nurse code is to offer accurate information in a non-biased way to allow patients to make decisions about their health, their life and their death. Medical Aid in Dying is legal in Oregon under the Death with Dignity Act, and often patients want to know more but don't know how to ask.
“Dignity is the quality and state of being honored or valued. Respecting the body, values, beliefs, goals, privacy, actions, and priorities of an autonomous adult preserves their dignity. “
HPNA Position statement
The few patients I have had conversations with about Medical Aid in Dying seem to want to protect their family from their emotional or physical suffering or want to avoid a charged conversation with a family member who is ethically opposed to this option. A few years ago, a hospice patient pulled me aside during our very first visit to whisper, “How much longer do you think I have to live? I want to know about Death with Dignity, but my son is morally against it.” She glanced towards her son, who was nervously washing dishes in the kitchen. She told me she was eating nothing these days, only taking sips of water.
I settled into a chair next to her bed and told her she probably had weeks left to live, maybe a month. I shared with her what I knew about Medical Aid in Dying and offered her resources to help her make this decision (referrals to our social worker, chaplain, and another local resource). In the end, she decided to not utilize Medical Aid in Dying, knowing that she may only have a month left and that the process would have taken a little longer than she had anticipated. She was able to make a well-informed decision about Medical Aid in Dying after being presented with the information and resources she needed, and this choice offered her one nugget of control in her world that was quickly spinning out of control.
The Patient Self Determination Act allows patients to refuse or stop life-sustaining therapies (e.g., ventilator support, hemodialysis, cardiac support devices, feeding tubes, nutrition and hydration).
Here is some basic information to help patients understand Medical Aid in Dying, as well as some resources to explore for further information. Medical Aid in Dying is legal in 10 states and jurisdictions. This statute allows qualified terminally ill adults to receive a prescription for life-ending medication they can take to bring about their imminent death. The patient criteria and regulations are strict and vary state by state. One universal criterion is that the patient must be deemed mentally competent to make this decision (i.e. mentally clear, not depressed, not suicidal, etc.) and physically capable of self-administering the prescription. In Oregon, two physicians must state that the patient's life expectancy is six months or less if the disease runs its course. The actual medication used varies, but it is often secobarbital or DDMA, which is a combination of digoxin, diazepam, morphine, and amitriptyline; death typically occurs within the hour after the medication is ingested.
The patient must make two verbal requests to the prescribing doctor for the prescription, separated by a minimum of 15 days. The patient must then make a written request for the medication, with two witnesses. On average, it may take three to six weeks until a patient can receive the prescription, with some nuanced exceptions to this rule. Out-of-pocket expenses vary depending on their medical and insurance coverage. A patient may also choose to fill the prescription but never take it.
According to the Oregon Health Authority, “Since the law was passed in 1997, a total of 2,895 people have received prescriptions under the Death with Dignity Act (DWDA) and 1,905 people (66%) have died from ingesting the medications.” The top end-of-life concerns reported for these patients who fill the prescription are: being less able to engage in social activities that are meaningful, losing autonomy, losing dignity, burdening family or friends, losing control of bodily functions, and inadequate pain control.
“Palliative and hospice nurses focus on the promotion of quality of life to enable patients to live as fully as possible, on their terms, from diagnosis to death.”
Often, patients who are in the process of obtaining the prescription for Medical Aid in Dying are concurrently signed up with a hospice program. The hospice team is to provide excellent symptom management, non-judgemental emotional support and spiritual support as the patient navigates their options and choices. As the Hospice and Palliative Nurse Association states, we “ must work to alleviate patient suffering and enhance quality of life while valuing patient and family goals of care.”
I guess my bumper sticker would say, “I want everyone to die peacefully, pain-free, surrounded by a community that cares, with all the physical and emotional support needed, free of charge.”
I do know that Medical Aid in Dying provides great comfort for the patients who want this choice. In Oregon, we have very rigid guidelines and criteria, and excellent support systems as one considers this option. If you want more information about Medical Aid in Dying, End of Life Choices in Oregon (EOLCOR) provides personal support and information about Death with Dignity and other end-of-life options in Oregon. Compassion and Choices offers political advocacy, community engagement, and outreach.
*Depending on where you live this statute is called Death with Dignity, Physician Aid in Dying, Physician-Assisted Death, Medical Aid in Dying, or Physician-Assisted Suicide. I refer to it as Medical Aid in Dying because it is a value-neutral term.