Senior Living & Resources
Sheila Himmel, right, and Fran Smith.
Writing the final chapter on life
"Changing the Way
We Die: Compassionate
End-of-Life Care and the Hospice Movement."
By Fran Smith a
nd Sheila Himmel
Viva Editions, 2013, 288 pages
What the Church says
"Christian hope sees these final days as a time to prepare for our eternal destiny. … A caring community devotes more attention, not less, to members facing the most vulnerable times in their lives.
"The healing art of medicine is an important part of this assistance. Even when a cure is not possible, medicine plays a critical role in providing 'palliative care' — alleviating pain and other symptoms and meeting basic needs. Such care should combine medical skill with attention to the emotional as well as spiritual needs of those facing the end of life."
— From "To Live Each Day with Dignity," by the US Conference of Catholic Bishops
"The Church has always been committed to compassionate and dignified end of life care. We must work with our hospice care and palliative care communities to continue to provide quality of care for the terminally ill. Hospice was one of the first programs to use modern pain management techniques to care compassionately for the dying.
Furthermore, people already have the right to refuse burdensome, life-extending treatments. They also have the option of leaving advance directives to determine their care when they are no longer able to express their wishes."
— Cardinal Seán Patrick O'Malley, OFM Cap., archbishop of Boston
Sheila Himmel, a Bay Area journalist, with her co-author Fran Smith, who lives in New York, collaborated on "Changing the Way We Die: Compassionate End-of-Life Care and the Hospice Movement." Smith and Himmel looked at hospice care offered in a variety of settings and offer some practical advice for those facing end-of-life decisions. Himmel was interviewed by Michele Jurich, associate editor and staff writer of The Catholic Voice.
Why did you and your co-author Fran Smith decide to write about hospice?
The idea grew out of our own fathers' deaths. Fran's father died in the hospital after a 10-year medical nightmare. Sheila's father died peacefully in hospice. As we talked about our experiences, we realized what a difference hospice can make for patients and their families.
We had both written extensively about health care, always a source of outrage and complaint in America. But when we mentioned hospice, the tone was completely different! People who worked in hospice loved their jobs and felt it was a calling. People in cafes leaned in to tell us about the amazing care their friend or loved one got with hospice. They lived longer than anyone expected, without pain, died peacefully surrounded by loved ones. It was the best medical care they had ever seen. They wished they'd known about hospice sooner.
What surprised you as you looked at hospice care?
The biggest surprise is that hospice is much more than a way to relieve the discomforts of dying. It is a way to live.
At the outset, we were surprised that hospice had become mainstream. Nearly half of Americans now die in hospice care. However, most people enroll too late to get the full benefit, mainly because the myth persists that hospice is "a place you go to die."
People kept asking why we were writing about such a sad subject. Surprisingly, the more we learned about hospice, the more inspired and hopeful we felt. Yes, we're all going to die someday. No, it doesn't have to mean ambulances, sirens, feeding tubes, excruciating pain and horrible final memories for your family. With hospice care, it can mean staying in your own home, comfort care for the patient, emotional and practical help for the family, 24-hour access to help. And, Medicare, Medicaid and private plans pay!
I was surprised by the story of the patient whose quality of life improved in hospice care. That seemed unexpected — and wonderful. Did you find that often?
Yes! For so many people, hospice turned out to be an amazing gift when life didn't seem to offer any. With good hospice care, one woman lived long enough to hold her first great-grandchild. A man who had spent nearly five years in hospitals was able to spend his final months at home and fulfill his wish to write a book about cancer. A Catholic couple got to have a Church wedding.
What role did faith play for the patient and caregivers?
Spiritual care providers are an integral part of the hospice team. One of the great insights of the early hospice movement in the 1960s was that that pain at the end of life doesn't stem only, or even primarily, from the physical ravages of disease. Suffering has spiritual and existential dimensions. That's why Medicare requires that hospices provide spiritual care. Early Christian literature laid the foundation for a "good death." Hospice offers choices, not a set of beliefs. As one chaplain put it: "You go into people's homes and you ask: How can I help you draw on your own tradition? How can I help you take the next steps, whatever they are, to find religious coherence and a sense of meaning?"
In our book, patients and caregivers struggled with spiritual questions that hospice chaplains were able to help them resolve — or find the clergy who could help.
A few words of advice for making the best use of the resources available in hospice care?
It starts with planning. We need to think about our health-care options before the crisis occurs, and we need to tell our friends and family what we want and don't want when the time comes. There are user-friendly tools to help with that process. And when the time comes for hospice, shop around, because most communities have several programs.
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