Susan E. Mazer, Ph.D. Blog

Thoughts and ideas on healthcare

Hi, and welcome to my blog! I'm Susan E. Mazer -- a knowledge expert and thought leader on how the environment of care impacts the patient experience. Topics I write about include safety, satisfaction, hospital noise, nursing, care at the bedside, and much more.

Composing a Swan Song: On Hospice and Palliative Care

March 14, 2014

Hospice and Palliative CareEach of us probably wants a “swan song.” The term comes from the Ancient Greek phrase referring to myth about the life-long silence of the swan being broken with beautiful song right before death.

I am a harpist, playing an instrument that is most associated with heaven, the sacred, death, and dying. My work at Healing HealthCare Systems for the past quarter century has been about life — creating a sacred space for healing, whether that journey is into life or death.

Playing the most beautiful music right before death seems magically perfect.  However, in reality, dying is not always a song, nor is it always beautiful.

Creating environments to support and respect the dying process brings challenge to the practice of advocacy because it is about providing the highest quality of comfort to those who may not know what that means for themselves.  Research on environments that support end-of-life care has revealed much of what many of us know intuitively.

Nature, quiet (but not too quiet), privacy, and social support have been identified as most meaningful to hospice patients. Providing an environment in which the dying process can be experienced with dignity, comfort, and respect requires a high level of sensitivity to the whole experience.

And, the whole experience includes living until one stops living.

Palliative care is the waiting area for hospice. They each are a call to attention of all that life is. Environments for those going through end of life in any stage call for respect for life that can be seen, heard, touched.

Comfort takes on new meaning; dignity is evidenced in providing for privacy, while, at the same time not isolating the family or patient. Respect is about every interaction; every communication; every factor of the experience.

My own mother died in Henry Ford Hospital in Detroit over 30 years ago. She went into the hospital because of kidney stones.

She died suddenly, without notice, of a heart attack while in the hospital. Nonetheless, she and my father were treated with great care, providing comforting memories that last until this day.

Twenty-two years after my mother passed, my father died after being in hospice for six months. I have warm recollections of the volunteer who sat with him during that time, just loving him with her presence and not requiring anything from him.

Of all the many stories that we receive from patients and families, it is most moving to us when, a year or more later, a family member — wife, daughter, son, or parent — writes to us to share how The C.A.R.E. Channel comforted them all during those last days, hours, and minutes of their loved one’s life.

Living after a death is about the stories, about how it all unfolded and played out until the last breath. And, the story of dying is created in the experience of living.

This is the legacy of hospice and palliative care and the mission that brings nurses and physicians into this practice. It is sacred work that lives long after the caring is done.

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