I’m grateful to Dame Cicely Saunders (and a network of like-minded women) for creating the modern-day hospice movement. Fortunately, and unfortunately, I have personal experience to draw from.
Dying May Be The Hardest Part of Living
If you ask a woman, what was the hardest thing she has gone through in life, for any woman who has lost their mother, that will most likely be high on her list. I have. It is in my top 3. It has been more than 10 years, and I still get tears in my eyes when I think about how much I miss her. The endless questions I have for her. How I wish I could pick up the phone and tap her wisdom. How I wish she could have spent a few more years with her grandchildren.
My mother had a terminal illness. I remember the call from her when she shared the news of the diagnosis. That she had 3-5 years to live. Over that period, her lungs would harden and lose the ability to produce the oxygen her heart and body needed for life. I don’t know about you, but the helplessness of hearing my mom cry on the other end of the phone; the wrenching impact of all her plans condensing into a desperately short window, and her desire to create lasting memories for her grandchildren before… It left an imprint. I will never forget.
The Importance of Open Conversations and Planning
But I had the luxury of knowing how limited our time was with my mother and we focused on creating lasting memories for us and her grandchildren.
One important thing we did was talk about what she wanted to do in the time she had left with us. We also talked about when it was time, how, and where she wanted it to come to pass.
Misconceptions about Modern Day Hospice
That is where Dame Cicely Saunders and her network of doctors, nurses, and nuns who created modern-day hospice come in. No, I didn’t personally know her or meet her. In fact, before my mom’s illness, I had heard of hospice. I studied Sociology and gerontology as an undergraduate student, including the obligatory On Death and Dying by Dr. Elizabeth Kubler-Ross.
Hospice was mentioned there. I passed my tests and secured my degree. But I didn’t really understand until it was personal. Until I needed it.
Recently, hospice has gotten some press with the announcement from former U.S. President Jimmy Carter, that he has entered hospice. If you’re not familiar with hospice, you may have interpreted that news to infer that he is on his deathbed. While in fact that is not true, as I’m writing this, Jimmy Carter has been in hospice for more than a year.
The Founding of Modern Hospice: A Collaboration
Dr. Saunders earned her medical degree following years as a nurse working with terminally ill patients in the United Kingdom in the 1940s and 50s. In 1967, she founded the first hospice in London. She collaborated with communities of doctors, nurses, and nuns all caring for terminally ill people. This included Dr. Florence Wald, then Dean of the Yale School of Nursing, who joined Saunders to study the approach before bringing hospice to the United States in the 1970s. Deep communities of brilliant and passionate women, humbly working together. Making room for each other. Lifting each other up. Fulfilling their purpose and changing the world for the better.
Historical Context and Evolution of End-of-Life Care
Approaches to death and dying reveal much of the attitude of society as a whole to the individuals who compose it. The development of ideas of what constitutes a good death can even be traced to prehistory.
— Dame Cicely Saunders
I’ll be blunt. People have been dying as long as there have been people. And the word hospice dates back at least to the Crusades. I don’t need to state that science, medicine, and end-of-life care were a tad more rudimentary then. Dr. Saunders dedicated her life to removing the pain and bringing dignity to the process of dying.
Personal Experience with Hospice Care: A Daughter's Perspective
For this, I am grateful. Dr. Saunders laid the foundation on which my mom was able to choose to spend her last days in the comfort of her own home. With the people she loved.
Local hospice workers visited each day and were on-call for us to help manage pain or understand the side effects of medication, and deal with our emotional struggles, fear, and grief. They helped us as much as they helped her.
I wasn’t there the day she took her last breath and the oxygen machines went quiet. But my dad said she knew. She is the one who told him, in those last moments, that she was dying. My aunt was there (her sister), and my dad had precious time to call my sister who was able to drive over to spend the last few minutes with her.
Closing Reflections on Dame Cicely Saunders' Legacy
When my time comes, I hope that I can pass in my sleep. But if that is not to be, then this is the next best way. In my home, with those I love there, supporting each other. Ready to embrace what comes. Peacefully and painlessly.
How people die remains in the memory of those who live on
— Dame Cicely Saunders
Read More about Dame Cicely Saunders
For more information about Dame Cicely Saunders and the beginning of modern-day hospice:
When Is It Time For Hospice
- Health status has declined significantly despite medical treatment.
- Treatments aimed at curing a serious illness are no longer effective or desired.
- Focus on quality of life is a predominant goal.
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Great article. When you have the need for hospice or have been with a loved during their passing, you really understand the blessing that hospice offers. Thank goodness for Cicely Saunders.
That is so true, Diane, such special people who have chosen hospice as their life-work.
Christy, I loved this. I, too, have firsthand experience with hospice caring for my dying mom (2 years ago), and feel a bottomless gratitude for the humane-ness and love the hospice community brought to her and to those caring for her. I didn’t know about Cicely Saunders, and I’m happy that I now do. The world would be a lot darker for a lot of people if not for this movement.
Lindsay, thank you so much for sharing your experience. Yes, your insights, that hospice brings light to what might otherwise be such a dark time, very much resonated with me.