When it comes to making decisions about aggressive medical treatments for the terminally ill, a recent study suggests that if quality of life is the goal, less is actually more. The study, published Aug. 13, 2012 in The Archives of Internal Medicine followed 396 cancer patients from 2001-2008.
Patients and their caregivers enrolled in the Coping With Cancer study were asked what factors most influenced their quality of life at the end of life.
They identified nine factors:
- Intensive care stays
- Hospital deaths
- Patient worry
- Religious prayer or meditation
- Site of care
Feeding tube use in the final week
Pastoral care in the hospital
- Chemotherapy in the final week
- Relationship between patients and their doctors
“There’s almost a dose-response relationship between aggressive medical procedures—like feeding tubes, ventilators and resuscitation—and impaired quality of life in the last week,” Holly Prigerson, a psychologist at Dana Cancer Institute in Boston told Cancer Today.
“The single most important factor was whether a patient spent the final week intensive care unit (ICU) or at home.”
Prigerson said that a strong doctor-patient relationship is one of the most important factors contributing to a better quality of life. “Patients don’t want to feel abandoned when there is no more medical treatment to give.”
Just as interpersonal relationships and support are important, so too is spiritually, according to the study. Patients who self-identified as being spiritual and incorporated their spirituality reported a sense of peacefulness at the end of life.
The study shines light on the importance of advanced planning. End-of-life care is extremely personal and varies a great deal between individuals.
If you want to live as long as possible or avoid an ICU death, your advanced care goals can’t be carried out if your doctors and family don’t know what your goals are.
University of California, Los Angeles (UCLA) researchers found that patient-centered care at end-of-life — ensuring a dying person’s wishes are known and followed — results in happier, less depressed patients who are in less pain and survive longer.
Advanced planning has other benefits too. It helps to keep health care costs down by eliminating aggressive measures that the patients might not want and typically don’t improve outcomes, according to the perspective piece in March 20, 2013 issue of the journal JAMA Surgery.
For instance, “You can’t talk with loved ones with a feeding tube in, and most patients think that it’s best to die peacefully among family, “ Prigerson said.
A report released by the Massachusetts Health Care Quality and Cost Council found 70 percent of American terminally ill patients want to “die at home” rather than being tethered to a machine, yet fewer than 25 percent actually get their wish.
When people say they "want to die at home," almost all have more in mind than the physical location of their last breath, the Massachusetts report said.
“Regardless of the care setting, what people want and need as the end of life approaches are things that have mattered to them throughout life, often now more intensely than ever: that their wishes and values are respected; that their symptoms are well controlled; that their dignity is maintained; and that they can spend as much meaningful time as possible with those they most love.”
Unfortunately without advanced planning, medical care during the final stages of life often is poorly coordinated and inattentive to a patient’s preferences, the JAMA perspective stated.
End-of-life care also consumes the lion’s share of health care dollars. A 2004 Health Care Financing Administration study found that 30 percent of Medicare resources are expended on the 5 percent of beneficiaries who die every year, and one-third of costs in life’s last year are accounted for during the final month.
Other studies also have found that patient-centered care can reduce costs in the last week of life by 36 percent and death, when it comes, is less likely to occur in an intensive care unit, the UCLA study stated.
“You can improve care while reducing cost by making sure that everything you do is centered on what the patients want, what his or her specific goals are and tailor a treatment plan to ensure we provide the specific care he or she wants,” said Dr. Jonathan Bergman, a Robert Wood Johnson Clinical Scholar at UCLA and lead author of the JAMA perspective piece.
End of Life Resources:
AARP has a collection of end-of-life care resources for caregivers.
http://www.aarp.org/relationships/caregiving-resource-center/endoflifecare.html
American Society of Clinical Oncology has an end-of-life, palliative care and advance care planning.
http://www.cancer.net/coping/advanced-cancer-care-planning
Growth House Inc. has compiled a searchable collection of educational resources for end-of-life care.
http://www.growthhouse.org
National Hospice and Palliative Care Organization offers information on caregiving, pain management, hospice care, advance directives, financial planning and more. Call 800-658-8898.
http://www.nhpco.org/learn-about-end-life-care
National Cancer Institute offers resources on communication in cancer care, advance directives, the final days or life and more. Call 800-4-Cancer.
hrrp:// www.cancer.gov/cancertopics/factsheet/Support/end-of-life-care
Lynette Summerill is an award-winning writer and Scuba enthusiast who lives in San Diego with her husband and two beach loving dogs. In addition to writing about cancer-related issues for EmpowHER, her work has been seen in publications around the world.
Sources:
Choosing End-of-Life Care. Jocelyn Selim. Cancer Today. winter 2012-2013, Vol 2. Issue 4.
http://www.cancertodaymag.org/Winter2012/Pages/choosing-end-of-life-care.aspx
Factors Important to Patients' Quality of Life at the End of Life. Baohui Zhang, MS; Matthew E. Nilsson, BS; Holly G. Prigerson, PhD. Arch Intern Med. 2012;172(15):1133-1142. doi:10.1001/archinternmed.2012.2364. Subscription required. Abstract online at:
http://archinte.jamanetwork.com/article.aspx?articleid=1212631
Before I die: How Much Do We Spend of End-of-life Care? WNET. Access online
http://www.thirteen.org/bid/sb-howmuch.html
Final Report: Patient-centered care and Human Mortality. The Official Website of the Massachusetts Health Care Quality and Cost Council.
http://www.mass.gov/hqcc/the-hcqcc-council/about-the-hcqcc-council/meeting-schedule-and-materials/expert-panel-on-end-of-life-care/final-report-patient-centered-care-and-human.html
A Call to Action: Improving Value by Emphasizing Patient-Centered Care at End of Life. Jonathan Bergman, MD; Robert H. Brook, MD, ScD; Mark S. Litwin, MD, MPH. AMA Surg. 2013;148(3):215-216. doi:10.1001/jamasurg.2013.1568. Abstract online:
http://archsurg.jamanetwork.com/article.aspx?articleid=1670370
“First Do No Harm – UCLA Researchers Find Patient-Centered Care at End of Life Results in Happier Patients who Live Longer in Less Pain”. UCLA Press Release. Kim Irwin, March 20, 2013.
http://newsroom.ucla.edu/portal/ucla/first-do-no-harm-ucla-researchers-244298.aspx
Reviewed March 26, 2013
by Michele Blacksberg RN
Edited by Jody Smith