Q. I am seriously thinking about what to include in my advance directive. I watched my dad deteriorate and die from dementia. I wouldn’t wish that on my worst enemy. I always say that if I get Alzheimer’s or another form of dementia, then I would like to die a quick and peaceful death on my terms, and not have to burden my loved ones with caregiving or seeing me deteriorate and lose my mind.
I recently read a book by Katie Engelhart, called The Inevitable: Dispatches on the Right to Die, that explores the complexity of physician-assisted death. She says patients seeking to end their own lives have a very difficult time doing so, even in states where it is legal. I think your readers who are interested in Physician Assisted Death (also known as Medical Aid-in-Dying) should definitely check it out.
I was wondering if you know what the status of Physician Assisted Death is in Virginia and if this is something I could now include in my advance medical directives. Thanks for your help!
A. Many people who are dying, in pain, or diagnosed with an incurable disease want a way to swiftly, peacefully, and legally end their lives. This option, however, is not legal in many states, and in states where it is legal (District of Columbia, Oregon, Montana, Vermont, Colorado, California, Hawaii, Maine, and New Jersey) there are strict measures regulating who qualifies.
In the book you mentioned, The Inevitable: Dispatches On The Right To Die, Katie Engelhart, writer, reporter, documentary film producer, and national fellow at New America, writes about the moral, ethical, religious, and family-related questions surrounding aid in hastening death. The book is based on hundreds of interviews with doctors, people seeking to end their lives, and people in what’s become known as the “euthanasia underground.” The book focuses on six stories – two doctors whose mission is to help people die – one legally, one illegally – and four people who are seeking help in ending their lives.
Engelhart’s Inspiration for Writing the Book
The phrase, “I’d rather die like a dog” always resonated with Engelhart. She spoke with a lot of people about euthanizing their beloved pets in the past and about how those euthanasias were acts of mercy and love. Engelhart realized that all these people really wanted was the same option for themselves if they become terminally ill, suffer from extreme pain, or are diagnosed with an incurable disease. As an example, a woman in her book named “Betty” wanted the security of knowing that when the time comes, she could take her life on her own terms. In Betty’s case, she wasn’t sick or suffering and she didn’t have a terminal disease. But she was very afraid of cognitive impairment and the idea of losing her mind was more terrifying to Betty than death. She just wanted the security of knowing that she had the option of not suffering or burdening her loved ones if the time came.
Why People Choose Physician Assisted Death (PAD)
According to Engelhart, similar to Betty in the example described above, “(m)ost people who choose to end their lives at a preplanned moment are more concerned with things like dignity and autonomy,” she says. “They’re worried less about the physical pain than the loss of themselves, though that’s not to say that pain doesn’t enter the equation.”
Based on research done in Oregon, the first state to legalize PAD, Engelhart describes in her book how “most people who choose to end their lives at a preplanned moment worry about being a burden on loved ones and about loss of dignity. Sometimes they worry about money.” She says, “it’s not the case, as critics worried back in the ’90s, that people are being driven to physician-assisted death because they’re in writhing agony.”
Who Currently Qualifies for PAD?
Even in states where it is legal, the law on who qualifies for PAD is very strict. A person must be terminally ill, and within six months of a natural death according to two doctors. And the person needs to have the mental capacity to be making the decision. If that’s in doubt, the patient is usually referred for a psychiatric assessment.
In other countries, PAD is legal and the criteria are looser. In Canada, instead of having the six-months-or-less time frame, patients are required to be suffering “unbearably and irremediably,” and their death is required to be reasonably foreseeable, which some doctors interpret as being 10 or even 20 years away. The Canadian government is now considering several amendments to the law, which would open it up to people who are mentally ill but not suffering physically and to people who have dementia. There are also several countries in Europe that already allow euthanasia for both of those conditions.
PAD for People with Dementia
Right now, neither dementia nor mental illness is included in any of the U.S. states’ right-to-die laws. Yet, in her reporting, Engelhart met many people who fear dementia more than anything else. They feel very alone and very deprived of options. She states that there’s an incredible demand for some way out of the dementia problem. She describes how in the Netherlands, a person can say when he or she’s diagnosed, “I want to be euthanized, when I reach X, Y, Z moment.” For instance, someone can say that time will be when they don’t recognize their spouse anymore or when they lose the ability to speak and to eat. These cases are very difficult and doctors are often very reluctant to be part of them. Here’s why: A patient could seem happy on the day of his or her death, and the doctor is still required to euthanize him or her because of what he or she specified potentially months and years earlier. It can put a doctor in a very difficult position, ending the life of somebody who requested it earlier, but no longer understands what’s happening.
Legalizing PAD in Other States, such as Virginia and Maryland
According to Engelhart, “people don’t want to die in a way that feels illegal and strange and kind of secretive. They don’t want to do something illegal to obtain drugs and die away from their children for fear that their children will be prosecuted after the fact. They want to die with their loved ones around them in a way that feels sanctioned, in a way that feels respectful.” She believes that these are the reasons why PAD should be legalized in more states.
PAD is still not legal in Virginia or Maryland. Bills introduced in Virginia and Maryland last year were set aside due to COVID-19, to possibly be reintroduced this year. Read more about these bills in my article, “When Medical Aid in Dying is Legal, But Still Not Accessible.”
Plan Ahead to Tell Loved Ones What You Would Want
Whether or not you agree with physician assisted death or would want to do it yourself should it become legal and should you be in a situation that warranted it, it is of utmost importance to plan ahead to make sure your end-of-life wishes are known to physicians and to your loved ones.
An Advance Medical Directive (including our proprietary Long-term Care Directive®, a vital part of our proprietary 4-Needs Advance Medical Directive® that I created for our Farr Law Firm clients) specifies what medical and long-term care related actions should (or should not) be undertaken if you’re too ill or incapacitated to make decisions. Again, right now, PAD is not legal in Virginia or Maryland, but who knows what the future will bring, which is why you should indicate your wishes in your Advance Directives and update your documents regularly.
If you or a loved one has not done Incapacity Planning, Long-Term Care Planning, or Estate Planning (or had your Planning documents reviewed in the past several years), now is a good time to plan and get prepared. Call us to make an appointment for an initial consultation:
About Evan H Farr, CELA, CAP
