Executive Summary

Greater palliative care knowledge of nursing home directors is linked to less aggressive end-of-life care, but more than 20% had little or no knowledge, according to recent research. Increasingly, ethics decisions are being made in the nursing home setting instead of hospitals.

  • Communication between long-term care facilities and hospitals may be incomplete or inaccurate.
  • Providers may lack understanding of whether discharged patients will receive hospice care at nursing homes.
  • Some bioethicists perform ethics consults at nursing homes or hospital clinics.

The more nursing directors knew about palliative care, the less likely their patients experienced feeding tube insertion, injections, restraints, suctioning, and emergency department visits, according to a recent study.1

In addition to surveying nursing directors at 1,981 nursing homes, researchers analyzed Medicare data on the 58,876 residents who died during the study period of July 2009 and June 2010, to ascertain the treatments they experienced when they were dying.

“It’s important for nursing home and hospital administrators to understand that exposure to greater palliative care knowledge is associated with lower rates of costly hospitalizations and less aggressive care,” says Susan C. Miller, PhD, the study’s lead author. Miller is a professor of health services, policy and practice at Brown University’s Center for Gerontology and Health Care Research in Providence, RI. “This is especially relevant given the trend toward accountable care organizations and bundled hospital/nursing home payment,” adds Miller. Other key findings include the following:

  • More than one in five of the surveyed directors had little or no basic palliative care knowledge.
  • Patients in higher-knowledge homes had a higher likelihood of having a documented six-month prognosis. “This suggests that when there is greater palliative care knowledge, facilities are more attuned to the changing needs of residents,” says Miller.

Outside of hospital

Medical education, in general, has focused too much on the hospital setting, according to Daniel P. Sulmasy, MD, PhD, Kilbride-Clinton professor of medicine and ethics at the University of Chicago’s MacLean Center for Clinical Medical Ethics. “And it seems to me that bioethics has been in the same rut,” he says. “Much of the decision-making that is of ethical significance now occurs outside the hospital.”

Sulmasy sees a significant need for involvement of bioethicists at long-term care facilities and nursing homes, in terms of education and training. “We have no presence there, but huge ethical decisions are being made in those settings,” he says. “It’s sort of the Copernican revolution in terms of decision-making — the hospital is no longer really at the center.”

University of Chicago Medical Center’s geriatric staff also serve as medical directors and physicians at two area nursing homes. “Our ethics consults service has begun to do consults at the nursing homes,” says Sulmasy. “This is more difficult to do if institutions aren’t directly affiliated with hospitals.”

Sulmasy was recently asked by a geriatrics faculty member to conduct an ethics consult at a nursing home. The patient was often admitted to the hospital, but was also cared for by the geriatrics staff at the nursing home. The case involved decision-making capacity and questions about who the proper surrogate decision-maker might be.

“People in hospitals need to realize that there is a need for ethics consults in the nursing homes, and reach out to these institutions educationally,” says Sulmasy. Lack of reimbursement is one obstacle. “Should the volume increase, I would hope nursing homes would recognize that they can’t have people who are working in hospitals providing this service without some sort of remuneration,” Sulmasy says.

In some cases, no one in the nursing home setting has assessed the patient’s decision-making capacity; the patient is then hospitalized. “The patient is making demands for treatment, and then comes to the hospital where it’s clear he or she is delusional,” says Sulmasy. By the time the family is contacted and named as appropriate surrogates, the patient is already on a ventilator in some cases.

Another recent ethics consult involved whether a patient being considered for hospice referral should have a pacemaker implanted. Providers had an ethical question as to whether the pacemaker, which was intended to keep the patient from being dizzy until they die, was best considered to be palliative or life-prolonging, explains Sulmasy.

University of Chicago’s ethicists also make an effort to promote ethics consults at hospital clinics. “That’s where much of the major decision-making takes place — to treat or not treat, or whether to send patients to hospice without going to the hospital,” says Sulmasy.

Communication often poor

Blair Henry, an ethicist at Sunnybrook Health Sciences Centre in Toronto, Ontario, works at a tertiary care hospital that also includes one of the country’s largest veterans’ long-term care facilities. “Issues pertaining to admissions of seniors from surrounding long-term care facilities is a frequent source of ethics consultations,” he notes.

Such consults often reveal missed opportunities to have important goals of care conversations before a resident from a long-term care facility ends up in the emergency department. “Frequently, the prior expressed wishes of elderly patients has been overturned by a distressed family member,” Henry says. “This results in care being provided that does not reflect a patient’s wishes.”

Communication between long-term care facilities and hospitals frequently fails to provide important and time-sensitive information, adds Henry. “This occurs in both directions — admission and discharge,” he says. Level of care forms are often misinterpreted as advance directives, for example. Information on the appropriate substitute decision-maker is sometimes incorrect.

Henry often finds that families need education on the limitations and appropriate use of artificial nutrition and hydration, and the meaning of palliative care.

Bioethicists need to be involved “both upstream and downstream, in terms of education and access for consultations,” says Henry. “The time of comfortably working in our respective silos needs to stop.”

Ethics consultants often encounter patients who change goals of care in the hospital, notes James A. Tulsky, MD, chief of the Division of Palliative Medicine at Brigham and Women’s Hospital in Boston. Such patients may end up being discharged to nursing homes, with the understanding that they will likely die there.

“If that is the case, it is essential that the discharging team understands what sort of care will be provided to the nursing home patient,” says Tulsky. Whether patients will be able to receive hospice care at the nursing home, and whether nursing home staff are trained in end-of-life care, are two questions to address prior to discharge.

While bioethicists are frequently involved in advance care planning, most are not experts in end-of-life care, says Tulsky, which spans the full range of symptom management and other palliative care competencies.

“Therefore, while they could encourage and even coordinate such education in nursing homes, if the homes were willing to have them, they would need to do this as part of a larger team with all the expertise,” says Tulsky.

Many front-line staff eager

Nursing homes are an increasingly important site for end-of-life care, according to Kathleen T. Unroe, MD, assistant professor of medicine at Indiana University’s Center for Aging Research in Indianapolis. Hospice provides formal end-of-life care services for some patients living in nursing homes. “But many people in nursing homes are not on hospice, yet have palliative care needs or goals of care,” says Unroe.

Front-line nursing home staff — nurses, nurse aides, and social workers — need to recognize when people have unmet needs, and know how to meet them or refer them to appropriate services, says Unroe.

Unroe led a study to assess the current state of palliative care knowledge and practices in nursing homes. Researchers surveyed a large number of front-line staff in both urban and rural nursing homes in Indiana using a validated survey.2

“While the staff scored well in many areas, areas for improvement were certainly identified, particularly around end-of-life care,” says Unroe. She was most surprised that 62% of staff indicated they would be interested in being a leader in palliative care for their facility, with the right training and support.

“This represents an exciting opportunity to train champions in nursing homes in this important skill set, who are eager to support their peers in providing this care,” says Unroe.

REFERENCES

  1. Miller SC, Lima JC, Thompson SA. End-of-life care in nursing homes with greater versus less palliative care knowledge and practice. Journal of Palliative Medicine 2015, 18(6):527-534.
  2. Unroe KT, Cagle JG, Lane KA, et al. Nursing home staff palliative care knowledge and practices: Results of a large survey of frontline workers. J Pain Symptom Manage 2015; 50(5):622-629.

SOURCES

  • Blair Henry, Ethicist, Sunnybrook Health Sciences Centre, University of Toronto, Ontario. Phone: (416) 480-6100 ext. 7178. Email: Blair.henry@sunnybrook.ca.
  • Susan C. Miller, PhD, Professor of Health Services, Policy & Practice, Center for Gerontology and Health Care Research, Brown University School of Public Health, Providence, RI. Phone: (401) 863-9216. Fax: (401) 863-9219. Email: susan_miller@brown.edu.
  • Daniel P Sulmasy, MD, PhD, Kilbride-Clinton Professor of Medicine & Ethics, The MacLean Center for Clinical Medical Ethics, University of Chicago. Phone: (773) 702-0912. Fax: (773) 702-0090. Email: dsulmasy@uchicago.edu.
  • James A. Tulsky, MD, Chief, Division of Palliative Medicine, Brigham and Women’s Hospital, Boston. Phone: (617) 582-9201. Email: JamesA_Tulsky@dfci.harvard.edu.
  • Kathleen T. Unroe, MD, Assistant Professor of Medicine, Indiana University Center for Aging Research, Indianapolis. Phone: (317) 274-9227. Email: kunroe@iu.edu.