The Vital Role of Women in the End-of-Life Care Movement

In honor of Women’s History Month, I’d like to use a bit of space to recognize the role of women in the end-of-life care movement. Many people don’t know, but countless early leaders in the hospice movement were women. The term was used for the first time in 1842 by a woman in France to identify a place to care for the chronically ill and dying. The concept of hospice came to the United States in the early 1960s as British physician Dame Cicely Saunders, who provided care at an inpatient hospice in London, began lecturing American medical and nursing students on the value of hospice care.

In 1969 Elisabeth Kubler-Ross, in her groundbreaking book On Death and Dying, advocated for the provision of care in the patient’s home and for allowing patients to participate in decision making at the end of life. But, it wasn’t until 1974 that the first modern hospice was established in America. With funding from the National Cancer Institute, the Connecticut Hospice, Inc., provided services to people who were terminally ill in their homes.

Each year in America, more and more terminally ill people receive hospice care. Today, 1.61 million people with Medicare received hospice care, according to the National Hospice and Palliative Care Organization. The upward trend reflects a growing understanding of choice by patients, loved ones and providers when it comes to end-of-life options, and a growing public demand for the palliative-focused care that hospice can provide.

Women helped to give this movement its start. Women today also are most often the primary caregivers to their loved ones who are terminally ill. They are the hands-on health providers, care managers, friends, companions, surrogate decision-makers and advocates.

Of course, some of the early leaders of the medical aid-in-dying movement were also women, including our very own Barbara Coombs Lee, who was the chief petitioner and author of the Oregon Death with Dignity Act.

I am thankful for the early founders of both of these movements and the countless other women who came after them — mothers, daughters, friends, spouses — and fighting fearlessly for all of us to have a voice in the care we wish to receive at the end of life.

Our beginnings are nothing short of groundbreaking. Yet, I also recognize the work we still have to do. Compassion & Choices will continue to seek:

• Equitable access to the full continuum of end-of-life care, including planning, palliative care and hospice, no matter where one lives, works or plays.

• Complete transparency, information and informed consent for all patients and the people patients choose to involve in their care.

• Transforming the way people with dementia die so that their legal right to forgo treatments is honored.

• Accessibility and enforcement of patient-documented decisions.

• Access to medical aid in dying in authorized states and Washington, D.C.

Death is inevitable. One of my supporters shared this quote with me recently that aptly puts into words the gradual transformation of our understanding of the inevitability of this. I found it so comforting, I hope you will too.

In youth we take serious risks because death has no reality for us. Youth goes caparisoned in immortality. It is only in middle age that we are shadowed by the awareness of the transitoriness of life. And the fear of death, however irrational, was surely natural, whether one thought of it as annihilation or as a rite of passage.  Every cell in the body was programmed for life; all healthy creatures clung to life until their last breath. How hard to accept, and yet how comforting, was the gradual realization that the universal enemy might come as a friend.

–P.D. James, excerpt from: Devices and Desires, p.137

With the understanding of death comes the realization that by planning for it, we likely are putting ourselves in a better position to achieve an end of life that we want, rather than to have decisions made by others, who may not even know us.

National Healthcare Decisions Week is April 16-20, 2022. If you haven’t already done your end of life planning, I urge you to get started — our End of Life Decisions Guide can help.

Warm regards,

Kim Callinan

@KimCallinan

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