Our Bodies, Our Lives, Our Right to Decide? How Women’s Health Advocates Might Shape End-of-Life Policies

By Ninia Baehr

Advances in health care have made it possible to increase the quantity, if not always the quality, of many people’s lives. There is a growing right-to-die movement in the United States. I have been working on exploring whether, and how, veterans of the women’s health movement might engage with and shape the right-to-die movement.

United States laws in six states make medical aid in dying legal (although not necessarily accessible) only for terminally ill, mentally competent, adult patients who can self-administer drugs prescribed by a physician.1 Data from these states shows that there has been little, if any, abuse of the system.2,3,4  Approximately 70 percent of voters favor legal aid in dying in at least some circumstances, and additional states are considering legalization. In some European countries, drugs can be prescribed to people who are not terminally ill but who are experiencing unbearable suffering, including psychological suffering; in some countries those drugs may be administered by a physician.

There are many parallels between the right-to-die movement of today and the abortion movement of the 1960s and early 1970s. As just a very few examples:

  • Then: In the late 1960s, legal abortions were available in a small number of states to women who could receive aid from physicians, usually after convincing a “therapeutic abortion committee” that they met its criteria.

Now: Legal aid in dying is available in a small number of states to people who can receive aid from a physician, usually after convincing two or more doctors that they meet that state’s criteria.

  • Then: In the 1960s, women who did not qualify for legal abortions in the United States could, if they had the means, travel to countries where legal abortions, while not guaranteed, were more available. 

Now: People in the United States who wish to receive aid in dying can, if they have the means, travel to other countries where legal aid in dying, while not guaranteed, is more available.

  • Then: When most abortions were illegal, lay women organized underground groups to provide safe, affordable, affirming abortion experiences. (For example, the Jane Abortion Service provided 11,000 abortions before Roe v Wade.)

Now: Lay people organize in ways that some say are outside the law to provide reliable, respectful, peaceful death experiences. (For example, Final Exit Network volunteers provide information to, and are willing to sit with, people choosing to hasten their own death even when legal physician aid in dying is not available.)

Everyone will die, but the way we experience death can be a gendered experience, due to factors such as traditional gender roles regarding caregiving (women are more likely to be caregivers to the dying), women’s relatively low economic status (women are more likely to be poor), and differing life expectancy rates between women and men (women are more likely to live longer).

Most of the women who led the fight for abortion rights in the 1960s and 1970s are now in their 60s, 70s, and 80s. During their potential childbearing years these women fought for more control over whether, when, and how they reproduced. As they progress through the life span, might some now fight for more control over how and when they die? And, if so, how might they shape the evolving right-to-die movement?

To begin to find out, I conducted interviews with seven veteran women’s health and reproductive freedom advocates. Five interviewees were former or current NWHN board members: Alice Wolfson, Charon Asetoyer, Judy Costlow, Loretta Ross, and Charlea Massion.

Women’s personal experiences and cultural and economic backgrounds influenced these women’s understanding of autonomy and the role it can, or should, play in individuals’ lives. My strongest impression from these interviews, however, was that these veteran activists shared a commitment to women’s, and people’s, ability to determine the course of their own lives, and deaths, as each saw fit.

The ability to actively hasten one’s own death, and to have assistance in doing so, may well be a higher priority for more-privileged rather than less-privileged women. Among those who saw it as relatively important, one felt that, at this point, limiting aid in dying to terminally ill people and engaging physicians as gatekeepers to ensure that individuals can be properly evaluated and that symptom relief can be maximized is appropriate. Several, however, indicated that they believed the option of assistance in hastening one’s own death should not be limited to individuals with a six-month terminal diagnosis. They supported extending this option to people experiencing other physical and psychological conditions that made their quality of life unacceptable to them, and they did not necessarily believe that doctors should be the only gateway to “peaceful pills.” All of these women, though, rejected the idea of making “peaceful pills” widely available without regulation. All wanted some form of protection against impulsive suicide or murder.

While none of the women I spoke with opposed assisted dying, some saw it as a relatively low priority compared to other end-of-life issues. These included not only legal patients’ rights, such as the ability to refuse unwanted medical treatments or to create advance medical directives, but also the ability to care for, and be cared for, in more supportive settings. Interviewees prioritized policy and environmental changes to better support caregivers as extremely important to advance end-of-life options. Suggestions included better housing options for low-income and rural families; more caregiver-friendly work policies; and increased availability of elder care services.

One possible vision that can be drawn from these preliminary interviews is that of a coalition or network organizing strategy in which the single issue of medical aid in dying is included in a wider context of a movement for expanded end-of-life options. The reproductive justice movement might provide a model for this approach to advocacy.

Two of the many lessons of the reproductive justice movement that apply to end-of-life issues are that organizing and policy-making efforts must be inclusive, and that eugenic or population control uses of medical technology are unacceptable. A third lesson has to do with the concept of “choice.” The reproductive justice movement insists that for the concept of “choice” to be meaningful in abortion decisions, a woman must have the option to terminate a pregnancy as well as the option to bear and raise a child in a safe, healthy, culturally-appropriate environment. Similarly, we might conclude that for the concept of “choice” to be meaningful in decisions about hastening one’s own death, a person must have the option to have assistance in hastening death as well as the option to receive ongoing care in a safe, healthy, culturally-appropriate environment.

Drawing on the reproductive justice model, women’s health advocates might shape the right-to-die movement by bringing more diverse constituents to the policy-making table, supporting safeguards against abuses, and promoting less-restrictive policies regarding access to aid in dying. They should also, simultaneously, promote more supportive policies regarding family caregiving and other forms of medical and social care for people at the end of life.

My work to explore whether, and how, veterans of the women’s health movement might engage with and shape the right-to-die movement is on-going. If you believe you have a story or an idea that might lend strength to this effort, please contact me. I am currently especially interested in filling in gaps in my research by interviewing veteran women’s health activists who are of Puerto Rican descent; who are living with long-term physical disabilities; or who have cared for, or are caring for, children with physical or cognitive disabilities. My hope is that policy-making for end-of-life concerns might become a more inclusive human rights endeavor. I welcome your participation in this effort. Please contact me at niniab@outlook.com.

 

Ninia Baehr is a former NWHN board member.

Article originally published in the March/April 2017 Women’s Health Activist Newsletter


References

1. Compassion & Choices, Understanding Medical Aid in Dying, Denver, CO: Compassion & Choices, no date. Available online at: www.compassionandchoices.org/understand-medical-aid-in-dying

2. Lewis P, Black I, “Adherence to the Request Criterion in Jurisdictions Where Assisted Dying Is Lawful? A Review of the Criteria and Evidence in the Netherlands, Belgium, Oregon, and Switzerland,” Journal of Law, Medicine & Ethics 2013; 41(4): 885-898. Available online at: https://philpapers.org/archive/LEWATT.pdf

3. Washington State Department of Health (DOH), 2015 Death with Dignity Act Report: Executive Summary, Olympia, WA: DOH, no date. Available online at: http://www.doh.wa.gov/portals/1/Documents/Pubs/422-109-DeathWithDignityAct2015.pdf

4. Oregon Health Authority, Public Health Division, Oregon Death with Dignity Act: 2015 Data Summary, Salem, OR: Oregon Health Authority, 2016. Available online at: http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year18.pdf