- Reporter explores difficult end-of-life questions through father’s death
- http://www.mercurynews.com/cost-of-dying
- https://twitter.com/CostOfDying
- http://www.mercurynews.com/cost-of-dying-video
Provide names of other journalists involved.
Photographs and three multimedia videos by photojournalist Dai Sugano, SJMN (script and narration by Krieger) – Cost of Dying – Relief At The Door – Gayla’s Goodbye
List date(s) this work was published or aired.
Feb. 5: Cost of Dying/death of father
Feb. 19: Lessons Learned
April 8: Choosing How You Die/advance directives
July 22: Relief At The Door/palliative care
Nov. 2: Feeding Dilemma/use of feeding tubes in advanced dementia
Dec. 2: Devoted To The End/caregiving
Dec. 9: At Life’s End, Care Differs/hospital variations based on Dartmouth data
Dec. 16: Gayla’s Goodbye/hospice
Dec. 30: A Better Way At The End
April 9: live discussion of advance directives with elder law attorney Jean Rasch, Coalition for Compassionate Care attorney Judy Citko and staffer Erin Henke.
July 23: live discussion of palliative care with Dr. Sharon Tapper, Medical Director for Palliative Care and Support Services for the Palo Alto Medical Foundation, and Dr. Neal Slatkin, chief medical officer with Hospice of the Valley.
Dec. 3: live discussion of caregiving with Leah Eskenazi of Family Caregiver Alliance.
Provide a brief synopsis of the story or stories, including any significant findings.
2012 project: Cost of Dying Feb. 5: Cost of Dying original article. With frail and elderly father suffering and doctors doing everything they can, a journalist learns it is hard to reject care, even as expenses soar. Feb. 19: Lessons Learned. From starting that difficult conversation, to accepting the end, readers offer their wisdom. April 8: Choosing How You Die: Advance Directives. How end-of-life planning guides doctors and loved ones through the agonizing decisions associated with dying. July 22: Relief At The Door/palliative care. Hospitals remain a primary option for the chronically ill, but support for comprehensive in-home symptom management and comfort care is rising, with promise to enhance lives and ease the cost of dying. Nov. 2: Feeding Dilemma: Our technological ability to stave off death creates dilemmas unimaginable decades ago. We describe how the PEG tube, originally designed for newborns, is now most often used in the demented elderly. Dec. 2: Caregiving can be immensely rewarding, driven by love and dedication. It is also exhausting, expensive and poorly supported by a medical system that delivers life-prolonging miracles, but little help for loving care at home in life’s fragile years. Caregiving bankrupts families, isolates loving spouses, delays retirement or forces us to pass up promotions. Dec. 9: From Manhattan to the Bay Area, hospitals differ in how they treat chronically ill patients at the end of life. We used Dartmouth Atlas data to show U.S. trends, as well as SF Bay-based differences in specific hospitals Dec. 16: When diagnosed with kidney failure, 70-year-old Gayla Caliva chose comfort care over combat, rejecting life-prolonging dialysis for a life-affirming ending with adventures to the beach, zoo, aquarium and favorite restaurants. We followed her during the final three months of her life. Dec. 30: The year-long series concludes with eight steps we can take to make our final years of life easier, kinder and less expensive. They are: – Take charge of our deaths by putting wishes in writing – Involve entire communities in commitment to planning – Encourage doctors to talk more frankly about choices – Pay doctors to help patients decide what’s best for them – Avoid costly care that won’t prolong or improve life – Offer better comfort care to patients in their final days – Pay families to help at home instead of using hospitals – Broaden use of comfort care through Medicare, insurance This concluding piece was accompanied by a newspaper editorial: “Americans and the medical community should rethink costly and unnecessary end-of-life care.”
Explain types of documents, data or Internet resources used. Were FOI or public records act requests required? How did this affect the work?
Feb. 5: From Stanford Hospital, I acquired my late father’s 32-page medical record and 6-page bill to chronicle & correlate his clinical care and costs.
Feb. 19: I summarized emails, letters and phone calls of 150 readers (incl. physicians and nurses) who contributed wisdom for “Lessons Learned” followup.
April 8:
1.) I compiled online examples of POLST and seven different advance directives, as a reader resource. Also included links to POLST and directive websites.
2.) I adapted one online advance directive with a ‘roll over’ feature – when you scroll over the form, my instructions help readers complete the form.
3.) I posted two forms on our website, for downloading or printing
July 22: I summarized major research findings about palliative care from Health Affairs, June 2012; Dartmouth Atlas of Health Care, 2007; Journal of Palliative Medicine, Vol. 6, 2004; Health Affairs, March 2012) – and included references so readers could find the original sources. Sept. 10 Infographic: “End of The Line On Medicare.” Face The Facts USA and Mercury News.com, sources: AHRQ and Dartmouth Atlas
Nov. 2: Using hospital-specific data acquired by the Brown University’s Center for Gerontology and Health Care Research, but never published, we created an online scroll-over feature to map SF Bay Area hospitals’ variation in feeding tube use in dementia. Used state data to create a U.S. map depicting national variations in feeding tube use.
Dec. 2: Long Term Expenses survey, Met Life 2012
Dec. 9: Dartmouth Atlas of Health Care – Hospital care (“intensity index”) in the last two years of life, U.S. and SF Bay Area – Hospice care, every major hospital in 5 Bay Area counties
Explain types of human sources used.
innumerable interviews with patients, families, nurses, geriatricians, physicians, health care economists and health policy experts, e.g. Nov. 2: I found the physician/inventor who designed the PEG tube in 1979 and tested it in newborns. I found families who used/resisted feeding tubes for their loved ones. Dec. 2: I heard of Eric Valor during the “Open Science Summit,” then found him via his blog. Found Susan and John Meyers through Palo Alto Medical Foundation Dec. 16: Found Gayla Caliva through Pathways Hospice. Finding a hospice patient willing to let us follow her through the end of life was a six-month effort. Most patients did not want this private moment publicized. Of those who were willing, some had painful diagnoses; one had a reluctant family. Caliva was perfect: an upbeat and outspoken hospice nurse with a ‘gentle’ death and only one immediate family member.
Results:
Feb. 15: KQED-FM public radio, “End-of-Life Decisions,” Forum with Michael Krasny, 9 a.m., San Francisco, CA April 12: speaker, “What’s the Good Death?” Avenidas, Palo Alto, CA April 16: keynote speaker, “Consider the Conversation,” National Health Care Decisions Day, Hope Hospice, Livermore, CA April 19: speaker, “End-of-Life Ethics,” Hospice of the Valley, San Jose, CA April 22: speaker, Indian “National Healthcare Decisions Day” community event, India Community Center, Milpitas, CA April 26: panelist, “End of Life Ethics,” California State University-Monterey Bay, Hospice Foundation of Monterey, Seaside, CA May 22: dinner with Congresswoman Jackie Speier (D, CA) and Dr. Laura Esserman (Professor, Departments of Surgery and Radiology; Affiliate Faculty, Institute for Health Policy Studies, UCSF; Director, Carol Franc Buck Breast Care Center) and colleagues from the medical community to discuss end-of-life issues. San Francisco, CA July 28: keynote speaker, “Planning A Good Death,” Successful Aging Celebration, Palo Alto Medical Foundation, Palo Alto, CA July 30: moderator, “How Doctors Die – It’s Not Like The Rest of Us,” Zocalo Public Square, Los Angeles Museum of Contemporary Art, Los Angeles, CA Nov. 15: speaker, “Advance Care Planning/How To Reach The Public,” Integrated Healthcare Association Leadership Summit, Marina del Rey, CA Dec. 2 & 9: speaker, Advance Care Planning,” St. Mark’s Episcopal Church, Palo Alto, CA January 2013: speaker, Advance Health Care Planning Workshops: Jan. 7 — Avenidas — Resources and Programs for Positive Aging 450 Bryant St., Palo Alto, CA Jan. 8 — Lafayette Library — Arts and Science Discovery Center 3491 Mt. Diablo Blvd., Lafayette, CA Jan. 14 — Contra Costa Times 2640 Shadelands Drive, Walnut Creek, CA pending: Jan. 10: speaker, Society of Professional Journalists/Northern California, S.F. Chronicle, San Francisco, CA, date and location tba: speaker, Advance Directive Planning workshop San Jose, CA Feb. 8: speaker, “Ethics and Healthcare Reform,” John Muir Hospital, Walnut Creek, CA March 15: speaker, “Covering End of Life Issues” Health Journalism 2013 Conference Association of Health Care Journalists Boston, MA April 9: speaker, “End of Life Issues and the Media” Coalition For Compassionate Care in California annual meeting Burlingame, CA”
Follow-up (if any). Have you run a correction or clarification on the report or has anyone come forward to challenge its accuracy? If so, please explain.
Eric Valor (“Devoted To The End,” Dec. 2) worked at Mercedes Benz, not BMW Technologies.
Advice to other journalists planning a similar story or project.
When angry or traumatized, absorb the heat and meaning of the experience – then detach yourself and learn from it. Read the literature. Study the data. Enlist the insights of experts in the trenches. Then use that analysis and hard-won wisdom to inform others, in an effort to reform public policy. There is great solace there. How we die matters – to us, and to our loved ones, who survive us and will forever carry the memories of our final days.