Dr. Ira Byock is a frequent contributor to the discussion of end-of-life care. Courtesy photo |
The only thing worse than dying is dying badly. But when Dr. Ira Byock makes that statement, he is not referring to accidental death, he is speaking to the often over-extended resources utilized to keep people from the inevitable.
Unlike most Americans, Byock is not afraid to discuss the option of withholding certain treatments with patients diagnosed with life-ending disease.
“This is a hard time in human life, but it’s just a part of life,” he said in a 2009 interview with “60 Minutes.” “Collectively, as a culture, we really have to acknowledge that we are mortal—get over it and start looking at what a healthy, morally robust way for people to die looks like.”
Carolyn Nystrom, head of the Hospice and Palliative Care of the Wood River Valley in Ketchum, couldn’t agree more. She has made it her personal and professional mission to make those end-days transitions as comfortable as possible, no matter the age, no matter the income, no matter the prognosis.
In hopes of bringing the two concepts closer together, Nystrom launched “The Best Care Possible: A Regional Palliative Care Summit,” which will be held Tuesday, Oct. 22, at the Sun Valley Inn.
Byock, director of Palliative Medicine at Dartmouth-Hitchcock Medical Center in New Hampshire and a professor at the Geisel School of Medicine at Dartmouth, is the keynote speaker. In addition to the conference lecture, he will give a free community presentation at 5:30 p.m. Monday, Oct. 21, at the Presbyterian Church of the Big Wood in Ketchum.
Since 1978, Byock has worked to shift the dialogue surrounding end-of-life care in the United States. The critically acclaimed author of “Dying Well,” “The Four Things That Matter Most,” and now, “The Best Care Possible,” helped found a hospice home-care program for the indigent population in Fresno, Calif.
Other conference highlights include a presentation by Dr. Lana J. Riemann, who serves as the full-time medical director for Hospice of Davidson County in North Carolina, where she provides patient care and oversight, as well as staff and community education. She will provide a realistic and humorous look at how wrong life-saving scenarios on television often are in “It’s Not Like on TV: Effect of the Media on CPS/DNR Decisions.”
Dr. Daniel Johnson is the national physician lead for palliative care at Kaiser Permanente-Colorado. He will share his thoughts on “Lost on the Yellow Brick Road: Finding Our Way ‘Home’.”
Statistics show that more than 70 percent of Americans would prefer to spend their final days at home.
Dr. P. Scott McLean will moderate a panel discussion that includes a patient’s views on “Perspectives & Positive Approaches in Palliative Care.”
The cost of the conference is $20 and scholarships are being offered. For details, visit www.hpcwrv.org/register.html or call 726-8464.
Nystrom is no newbie to the conversation. The executive director of the community-funded program in Ketchum was honored with the $50,000 Soujourns Award last year from the Cambia Health Foundation.
With Nystrom at the helm for three decades, Hospice and Palliative Care of the Wood River Valley has grown from just providing volunteer bereavement services to become a full-service, community-based hospice and palliative care program. In addition, the nonprofit also runs a bereavement camp for children, several specialized grief support groups and individual counseling. The organization does not charge for any of its services.
Casey Corbin, executive director of the Idaho End of Life Coalition, which nominated Nystrom, said of her, “She is a true titan in the field of hospice and palliative care and her hospice, Hospice and Palliative Care of Wood River Valley, is considered a national model for rural palliative care.”
Nystrom said it is because the community embraces the effort that they are able to provide the flexible support of individual patients. Their involvement often provides much needed relief to family members in an emotionally challenging time.
“We have hospice dropouts,” she said. “People come here and rely on our services when they first get diagnosed and they need help telling their families or knowing what plans and decisions need to be made. We see ourselves as a natural progression from a diagnosis—not just the end, but a place to regroup.”
Byock said, “Palliative care and hospice is about preserving the very best life you can during a predictably difficult time. It’s about living as fully as possible through the very end of life.”
Statistics show that more than 70 percent of Americans would prefer to spend their final days at home surrounding by their loved ones, but because of advances in life-saving medicine, the majority are dying in hospital instead.
As healthcare now exists, Americans have to give up treatment to get hospice care, when in fact, choosing hospice over extended medical intervention not only saves money but can extend life and at a higher quality.
Talking about and planning end-of-life care, “is the antithesis of being ghoulish, it is truly about celebrating life,” Byock said. “I think we made a mistake in America too often looking at disease solely through the lens of medicine. While the treatment is medical, illness is personal.”
The dialogue starts at home, with the people you love the most, he said.
“It starts with a conversation that we are mortal, who you want to make decisions if you can’t speak for yourself and what your personal values are,” he said. “Don’t leave it to artificial choices that are given by Medicare and insurance.”
Chronological age makes no difference, Byock said. It is committing oneself to the best possible care.
“If because of our own pain we refuse to see that this person is not immortal, we can cause more suffering. Out of our own grief, we can inadvertently cause harm.
“The best care isn’t found in some algorithm. The best care is consistent with the values, preferences and priorities of an individual.”
Background
Hospice: An at-home or in-facility program that provides pain control, care or emotional support for patients with a terminal illness, which honors an individual’s end-of-life decisions.
Palliative: Care that relieves suffering without curing.
- For more on Dr. Ira Byock’s philosophy, visit www.dyingwell.org.