A Story About Care

The Story About Care is one man’s reflections on the power of the caring relationship that can exist when people working in health care see the “person and not a pathology.” Jim Mulcahy shares his heart touching story of what it has been like to be cared for as he lives with end stage lymphoma while caring for his wife Sarah who has Huntington’s Disease.

 

This video was produced by the Canadian Virtual Hospice and the Canadian Association of Schools of Nursing in association with the Health Design Lab at St. Michael’s Hospital and Wendy Rowland, film maker. We are grateful to Jim and Sarah for opening their home and their lives to us and sharing their story in the service of others.

The elephant in the room

By Karen Sibert 26th February, 2012

One of my partners recently sent out a call for an extra pair of hands to help out in the operating room—and with good cause. The patient on the OR table was a woman in her 60’s whose massive stroke had left her hemiplegic, aphasic, and unable to swallow. She weighed well over 400 pounds. Attempts to place a percutaneous endoscopic feeding tube had failed due to her size, and she was now scheduled for open gastrostomy tube placement under general anesthesia.

Even with two experienced anesthesiologists working on the patient, getting vascular access and an endotracheal tube in place wasn’t easy. She was anemic for reasons that weren’t fully worked up, and her blood pressure was alarmingly labile. At the end of the procedure, the patient couldn’t be safely extubated so she went to the ICU. As it turned out, she never left. The family couldn’t agree on any reduction in the level of life support, and after a stormy five-week stay, she finally expired. The cost must have reached hundreds of thousands of dollars, and all was spent on sustaining a patient who had no hope whatsoever of meaningful recovery.

This is really the elephant in [...] continue the story

What does “palliative care” feel like?

It’s hard to imagine what a palliative care environment is like unless your family has experienced a loved one dying in one.

Almost eleven years ago, my 89 year old mother was dying of lung cancer. Fortunately, the almost five-year course of the disease had left her mostly symptom- and pain-free. But, about a month before she died, my mom suffered a nasty fall. After a day or so of hospital tests her (very wise) physician told us, “the disease has spread to her brain; there’s nothing more we can do. I suggest we transfer her to hospice.”

Startling, but not unexpected, news.

We talked with my mother about the transfer. She was calm and knew it was for the best.

I don’t remember what I was expecting when we accompanied my mother to the hospice facility, but it certainly wasn’t the kind of vibrant atmosphere we found there.

After all, death is supposed to be solemn and foreboding.

But not here. Here, families were sitting in a spacious greatroom, watching TV, playing games and laughing. There were kids around. The staff was upbeat and engaging.

We were shown to my mother’s room and encouraged to visit any time, day or night. A staff nurse reassured us [...] continue the story

How Patrick Swayze died: Why we should care

By Barron H. Lerner, MD

When I finished my book on famous patients, the most common question I received was “Are the stories of sick celebrities really relevant to other patients?” My answer was that yes, with some caveats, these experiences are well-worth knowing.

The same can be said for the story of Patrick Swayze’s terminal pancreatic cancer, which has now been told by his widow, actress Lisa Niemi Swayze, in a new book, “Worth Fighting For: Love, Loss and Moving Forward.” Patrick Swayze, a dancer and actor best known for his roles in the films “Dirty Dancing” and “Ghost,” was diagnosed in January 2008 and died of the disease in September 2009 at the age of 57. He was originally told he would live only a few months.

First, the caveats. Like most celebrities, Swayze had the means, as his wife says, to “think outside the box.” He enrolled in a clinical trial at Stanford University, traveling regularly to Palo Alto from Los Angeles for experimental chemotherapy. Swayze also was a VIP patient, getting first-class attention from top doctors and hospital staffs. Most patients experience greater hurdles.

Nor should pancreatic cancer patients who read “Worth Fighting For” assume that they, like Swayze, can [...] continue the story

5 Stories: San Diego Hospice and The Institute for Palliative Medicine

Hear the stories of San Diego Hospice patients, their caregivers, our staff and volunteers, who talk about making the most of each moment for as long as life lasts, while living with a serious illness or terminal illness.

June 30, 2011

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