Many Kidney Failure Patients Lack Advance Directives Near the End of Life

• Among nursing home residents in the last year of life, patients with kidney failure were far less likely to have advance directives that put limitations on treatments and designated surrogate decision makers compared with other nursing home residents with serious illnesses.
• Advance directives with these components were associated with a lower use of intensive interventions at the end of life.
• Nearly all kidney failure patients with an advance directive putting limitations on treatment received end-of-life care that was concordant with their preferences.

More than 80,000 Americans die each year while receiving dialysis therapy for end-stage renal disease.

Newswise, February 3, 2017— A new study indicates that many nursing home residents receiving dialysis do not have advance directives that sufficiently address end-of-life treatment decisions.

Those with advance directives that put limitations on treatments and designated surrogate decision makers had fewer hospitalizations, intensive procedures, and inpatient deaths, and they were more likely to use hospice and discontinue dialysis prior to death.

The study, which appears in an upcoming issue of the Clinical Journal of the American Society of Nephrology (CJASN), found that nearly all patients with an advance directive requesting treatment limitations received end-of-life care that was in line with their preferences.

Advance directives outlining individuals’ preferences related to end-of-life care are often promoted for patients with serious illnesses such as kidney failure as a means to avoid interventions that are unwanted or of limited benefit.

Little is known about the relation between the content of advance directives and later treatment decisions among kidney failure patients, however.

To investigate, Manjula Kurella Tamura, MD, MPH (VA Palo Alto Health Care System and Stanford University) and her colleagues examined the prevalence and content of advance directives among 30,716 nursing home residents with end-stage renal disease (ESRD), and30,825 nursing home residents with other serious illnesses during the year before death.

The investigators also linked the content of advance directives to Medicare claims to determine which treatments ESRD patients received in the last month of life.

In the last year of life, 47% of patients with ESRD vs. 59%-70% of patients with other serious illnesses had any form of advance directive. In addition, 36% of nursing home residents with ESRD had a treatment-limiting directive, 22% had a surrogate decision maker, and 13% had both.

These estimates were 13%-27%, 5%-11%, and 6%-13% lower, respectively, than for patients with other serious illnesses. For patients with ESRD who had both a treatment limiting directive and surrogate decision maker, the frequencies of hospitalization, intensive care unit admission, intensive procedures, and inpatient death were lower by 13%, 17%, 13% and 14%, respectively, and hospice use and dialysis discontinuation were 5% and 7% higher compared with patients with ESRD who lacked both components.

“We found that advance directives indicating treatment limitations and/or documenting surrogate decision makers were associated with less intensive end-of-life care among nursing home residents with ESRD, but these were in place much less often than for nursing home residents with other serious illnesses,” said Dr. Tamura.

“Because the vast majority of patients with a treatment limiting directive received care that was consistent with their advance directive, our findings suggest that efforts to increase engagement in advance care planning and expand the use of advance directives among patients receiving dialysis may offer untapped opportunities to better align end-of-life care with patient preferences and values.”

Study co-authors include Maria Montez-Rath, PhD, Yoshio Hall, MD, MS, Ronit Katz, DPhil, and Ann O’Hare, MD, MA.

Disclosures: The authors reported no financial disclosures.

The article, entitled “Advance Directives and End-of-Life Care among Nursing Home Residents Receiving Maintenance Dialysis,” will appear online at http://cjasn.asnjournals.org/ on January 5, 2017, doi: 10.2215/CJN.07510716.

Study: Advance Directives Are About More Than Refusing Care

Younger people who fill out document request interventions

Newswise, October 1, 2015--A new study finds that nearly a third of people who fill out advance health care directives — documents that lay out a patient’s wishes for end of life care — request medical interventions. 

The research from DePaul University explores the choices people make in advance directives, where they store the documents and with whom they discuss their plans.

The study, “Assessing Advance Care Planning: Examining Autonomous Selections in an Advance Directive,” will be published in the fall issue of The Journal of Clinical Ethics. Lead author Craig M. Klugman, chair of DePaul’s Department of Health Sciences, and co-author Nicole M. Tolwin, a DePaul alumna and graduate student in nursing at the University of Illinois at Chicago, found a correlation between a person’s age and their request for interventions. 

Younger people requested interventions such as respiratory support or antibiotics more frequently than people over the age of 50. Researchers also discovered that many people may not be discussing their wishes with loved ones after an advance directive is completed.

“Contrary to common beliefs in the health care community, advance directives are used for more than refusing care,” said Klugman, a bioethicist and medical anthropologist at DePaul. 

“However, many participants indicated that they had not yet had a meaningful conversation with their future surrogate decision-maker, and this needs to be addressed.”

Researchers analyzed survey results from 491 individuals, ranging in age from 19 to 94, who wrote an advance directive through www.TexasLivingWill.org. 

“Knowing what patients value can provide guidance for unforeseen decisions,” said Klugman.

Other findings about interventions are:
• People over the age of 50 were more likely to refuse aggressive care in the document, while those younger than 50 were more likely to request interventions.
• Some 95 percent of respondents want to be free from pain during end of life care.
• The vast majority, 93 percent of respondents, described valuing quality of life over quantity. No difference was found by age group for this factor.
• Overall, two-thirds to three-quarters of participants chose to refuse interventions, but this outcome is still lower than findings in previous research.

Researchers also asked where individuals stored their advance directives, and with whom they had discussed them. Findings include:

• While many respondents turned their advance directive over to an attorney or physician, far fewer actually had conversations about the document with loved ones.
• Of those who had conversations about advance care planning, most discussed it with a spouse or partner, followed by a child or a sibling.

“It appears that many people hand a document to a person who may be involved in their future care decisions, but they don’t discuss what the document means, or what their wishes or values are,” said Klugman. 

“Having the document is important, but having the conversation is essential.”