Improved Empathic Communication Between Hospice Teams and Caregivers Needed

A new study authored by University of Kentucky researcher Elaine Wittenberg-Lyles shows that more empathic communication is needed between caregivers and hospice team members.

The study, published in Patient Education and Counseling, was done in collaboration with Debra Parker Oliver, professor in the University of Missouri Department of Family and Community Medicine. The team enrolled hospice family caregivers and interdisciplinary team members at two hospice agencies in the Midwestern United States.

Researchers analyzed the bi-weekly web-based videoconferences between family caregivers and their hospice teams. The authors coded the data using the Empathic Communication Coding System (ECCS) and identified themes within and among the coded data. The team reviewed 82 total meetings.

Overall, the researchers noted that members of the hospice team tended to react to caregiver empathic opportunities with a perfunctory response, implicit recognition, or simple acknowledgement as defined by the ECCS scale. Most caregiver statements were met with biomedical or procedural talk from the hospice team.

Few responses went beyond to offer confirmation with a positive remark to the caregiver, and even fewer provided a shared experience to address the caregivers' emotional needs.
Prior research has shown that a physician's expression of empathy positively influences the patient-physician relationship, but as this study shows, this is often not the norm. Other research shows that physicians tend to respond more to informational cues from patients than emotional cues, and often respond to patient concerns by turning the conversation to biomedical information or medical explanation, nonspecific acknowledgement or reassurance.

"This study shows the need for better empathic communication between caregivers and hospice team members," said Wittenberg-Lyles, who holds a joint appointment in the UK College of Communications and the UK Markey Cancer Center. "Improving communication about psychosocial issues, emotional losses and frustrations for the caregiver will lead to better patient-centered care for hospice patients and their families.

Palliative Care And Patient Choices In Advance Care Directives

Advance care directives allow patients to provide instructions about their preferences for the care they would like to receive if they develop an illness or a life-threatening injury and lose the capacity to make decisions for themselves. While many people may assume that patients have strong preferences for the type and aggressiveness of care they wish to receive near life's end, a new study by researchers at the Perelman School of Medicine at the University of Pennsylvania suggests that for many patients, preferences for end-of-life care are constructed on the spot and heavily influenced by the ways in which the options are presented. Specifically, the investigators found that even when it comes to such seemingly personal decisions as end-of-life care, people tend to accept options that are presented as the default, much as they accept the default in choosing automobile insurance or whether to contribute to 401(k) programs. The research is published in the February 2013 issue of Health Affairs.

"We found that default options have large influences on the care patients choose near the ends of their lives," said Scott D. Halpern, MD, PhD, MBE, assistant professor of Medicine, Epidemiology, and Medical Ethics and Health Policy, and director of the Fostering Improvement in End-of-Life Decision Science (FIELDS) Program at Penn. "Although this result will be surprising to many, it makes a lot of sense on closer inspection - how could we expect patients to have deep-seated preferences about choices that are rarely encountered, difficult to contemplate, and about which we do not get feedback as to whether previous, similar, choices did or did not promote our broader goals?"

Halpern said that despite national policies and laws promoting the use of advance care directives, there has never before been a study comparing different types of advance directives. As a result, clinicians have no way of knowing what type of directives to recommend for patients to help them make and document these difficult decisions. To explore how patients make these decisions, the researchers randomly assigned 132 seriously ill patients with life expectancies of two years or fewer to complete one of three types of advance directives. Two types had end-of-life care options already checked on the form - resulting in a "default" choice - but one of these prioritized care focused on comfort, and the other, care focused on extending life by all means possible. The third type was a standard advance directive with no options pre-selected. On each form, patients could easily choose from among all possible options.

The research team found that overall, most of these seriously ill patients preferred comfort-oriented care, but the default options influenced those choices dramatically. For example, 77 percent of patients in the comfort-oriented default group chose an overall plan of care that prioritized comfort, while 43 percent of those in the life-extending default group rejected that default and selected comfort-oriented care instead. Among the standard advance directive group with no option already selected, 61 percent of patients selected comfort-oriented care. The authors found similarly large influences of default options on patients' desires to receive feeding tubes, mechanical ventilation, dialysis, or admission to an intensive care unit.

The researchers note that what makes the findings eye-opening is that these large differences were not due to patients just failing to recognize the default. Instead, after patients completed their directives and had them signed by a witness, the team called patients, helped them focus on the default option used (or not used) in their assigned directive, and asked them if they would like to change any of their choices. Only after patients had the opportunity to change their stated preferences did the directives become parts of the patients' medical records. The researchers found that none of these patients changed their original selections about their preferred care plans. Furthermore, patients in all groups expressed equally high satisfaction with their advance care planning, suggesting that patients were content to be guided in making such decisions.

"This study strongly suggests that many patients do not hold deep-seated preferences regarding their end-of-life care," said Halpern. "However, the study does not yet tell us whether we should use advance directives with default options in clinical practice. Instead, this work provides motivation for future research examining whether using default options in advance directives may improve important outcomes, including patients' receipt of wanted and unwanted services, resource use, survival, and quality of life."

Hospice use rises; So does aggressive care

IMAGE: A hospice stay of less than three days suggests patients may not be receiving the comfort and psychological support that hospice is meant to provide. Darker states have a higher percentage of hospice stays of less than three days.

Credit: Brown University


A study published Feb. 6 in the Journal of the American Medical Association finds that while more seniors are dying with hospice care than a decade ago, they are increasingly doing so for very few days right after being in intensive care. The story told by the data, said the study's lead author, is that for many seniors palliative care happens only as an afterthought.

"For many patients, hospice is an 'add-on' to a very aggressive pattern of care during the last days of life," said Dr. Joan Teno, professor of health services policy and practice in the Public Health Program at Brown University and a palliative care physician at Home & Hospice Care of Rhode Island. "I suspect this is not what patients want."

The findings of Teno and her co-authors come from their analysis of the Medicare fee-for-service records of more than 840,000 people aged 66 or older who died in 2000, 2005, or 2009. They looked at where seniors died, what medical services were provided during their last 90 days of life, and how long they received them.

Over the course of the decade, hospice and hospital-based palliative care teams have made major inroads in the health care system, essentially becoming mainstream. But a deeper analysis of patients' histories in the data, Teno said, shows that in many cases the fee-for-service system still fell short of ensuring the full measure of comfort and psychological support that hospice is meant to provide dying seniors.

Data on dying

For example, while the proportion of dying seniors using hospice care increased to 42.2 percent in 2009 from 21.6 percent in 2000, the proportion who were in intensive care in the last month of life also increased to 29.2 percent in 2009 from 24.3 percent in 2000. More than a quarter of hospice use in 2009, 28.4 percent, was for three days or less, and 40 percent of those late referrals came after a hospitalization with an intensive care stay.

In 2008 the sister of study co-author Dr. David Goodman, director of the Center for Health Policy Research and a professor at the Geisel School of Medicine at Dartmouth College, had advanced cancer and died during a procedure undertaken the day before she was to enter hospice. Goodman said that aggressive care is the norm at many medical centers.

"Poor communication leading to unwanted care is epidemic in many health systems," he said. "The patterns of care observed in this study reflect needlessly painful experiences suffered by many patients, including my sister, and other friends and family members of the research team."

Among all patients, the percentage referred to hospice for just three days or less doubled over the decade to 9.8 percent from 4.6 percent.

"With this pattern of going from the ICU to hospice, these dying patients are getting symptom control late and can't benefit as much from the psychosocial supports available were there a longer hospice stay," Teno said.

Among all patients, the average amount of time with hospice in the last 30 days of life rose to 6.6 days in 2009 from 3.3 days in 2000, but intensive care days rose too: to 1.8 days in 2009 compared to 1.5 days in 2000.

Meanwhile, although seniors who died in 2009 were 11 percent more likely to die at home and 24 percent less likely to die in the hospital than those who died in 2000, the proportion who were transferred from one location to another in the last three days of life — a significant burden on patient and family — rose to 14.2 percent in 2009 from 10.3 percent in 2000. Also, the average number of transitions a patient made in the last 90 days of life increased to 3.1 in 2009 from 2.1 in 2000.

These trends reflect more ICU, more repeat hospitalizations, and more late transitions, said Vincent Mor, professor of health services policy and practice, the paper's senior author.

Reasons and recommendations

The apparent reasons for the observed increases are a mix of regional differences in physician culture, the financial incentives of fee-for-service care, and the lack of timely communication with patients and their family about the goals of care, Teno said.

Teno and her colleagues found that people with more predictable causes of death - cancer — were much more likely to die at home and with hospice care than patients who suffered from chronic obstructive pulmonary disease, a condition with a less certain end-of-life trajectory.

But in data not published in the paper, the researchers also observed wide state-by-state variations in late hospice referrals. In fact, her home state of Rhode Island had one of the highest rates of short stays in hospice. This variation is a product not of differences in patient health, she said, but differences in local medical culture around palliative care.

As importantly, Teno said, fee-for-service reimbursements create financial incentives for doctors and other providers to pursue aggressive measures rather than to sit down with family members and patients to develop an end-of-life care plan that incorporates their preferences.

"We need to transform our health care system, from one based on fee-for service medicine for the majority of Americans, to one where people are not paid for just one more ICU day," Teno said. "Instead we need a system where doctors and hospitals are paid for delivering high-quality, patient-centered care that understands the dying patient's needs and expectations and develops a care plan that honors them. We need publicly reported quality measures that hold institutions accountable to the standard of patient-centered care for the dying."

By revealing the patterns of where, when, and for how long patients received palliative services around the time of their death, the study begins to provide such data.