Transferring dying nursing home residents to the hospital: DON perspectives on the nurse’s role in transfer decisions

Feature Article

Transferring Dying Nursing Home Residents to the Hospital:

DON Perspectives on the Nurse’s Role in Transfer Decisions Melissa M. Bottrell, MPH, James F. O’Sullivan, MPH, Melissa A. Robbins, MPA, PhD, Ethel L. Mitty, EdD, RN, and Mathy D. Mezey, RN, EdD, FAAN

Abstract This qualitative study elicits factors that influence decisionmaking by nurses about transferring a dying resident from the nursing home to the hospital. Focus groups with directors of nursing (DONs) from long-term care facilities revealed those decisions are influenced by knowledge (or lack thereof) of resident or family preferences, nurse interactions with physicians, nursing home technological and personnel resources, and nurse concerns about institutional liability. DONs can improve transfer decisions by communicating with all parties, clarifying nursing home processes for end-of-life care, and scheduling early and thorough conversations with residents and families about end-of-life care. DONs can implement improvements through staff education on communication issues, rigorous evaluation and performance outcome measures related to patient transfer, and conveyance to staff of the institution’s mission and the nursing service’s values. (Geriatr Nurs 2001;22:313-7)

D

irectors of nursing (DONs) in long-term care facilities respond to multiple pressures when supporting residents’ preferences for end-of-life (EOL) care and nursing actions on behalf of dying resi-

Geriatric Nursing 2001 • Volume 22 • Number 6

dents. In their dual role as administrators and nurse experts, they develop, implement, and monitor policies; allocate resources to maintain the fiscal stability of their institutions; and provide for resident health and safety, identify staff development needs, monitor competencies and practice, and advocate for residents.1 DONs must recognize and often mediate institutional, staff, emotional, and cultural conflicts around death and dying. They also serve as role models of professional practice, create and support collaboration with other professionals in the facility, and exercise leadership in decision-making and conflict resolution. If support for dying residents is to be made more humane, DONs must spearhead that change. During the past 20 years, societal concern has grown over where death occurs, the circumstances under which people die, and the care that people receive during the dying process. One of the most common decisions around care in the nursing home is the issue of transferring residents to the hospital at the end of life.2,3 Currently, 55% of all deaths occur in a hospital;4 of those deaths, 30% are nursing home residents transferred in the last few days before death.5 Residents often are hospitalized for conditions that could be handled in nursing homes if the requisite resources were available.6,7

313

The adverse effects of hospitalization8 on residents and the related costs to the health care system strongly suggest that reasons for the transfer of dying nursing home residents should be examined. Nurses play a substantial role in nursing home-to-hospital transfer decision-making. This article discusses DONs’ perceptions of the transfer decision-making process and institutional structures for appropriate decision-making regarding transfer of dying nursing home residents to the hospital or keeping those residents in the home until death.

BACKGROUND Approximately 17% to 22% of all deaths in the United States—380,000 per year—occur in nursing homes.3,4 The Institute of Medicine9 estimated that 25% of nursing home residents are admitted with terminal conditions from which they are expected to die within 3 months. Dying in an institution requires clinical and procedural supports if death is to occur with minimal suffering and utmost dignity. Few nursing homes have designated hospice units nor a philosophy, protocol, or staff resources to treat the medical instability and pain or symptoms that sometimes occur during the dying process. Hospital nurses report that some nursing home residents are bounced to emergency rooms for aggressive interventions when, in fact, the resident is dying.2 Little research has examined the influence of staffing, resources, and emotional support on nursing home personnel dealing with dying residents, particularly nurses’ propensity to transfer.6 Nursing homes operate in an environment in which multiple jurisdictions and reimbursement sources (state and federal oversight and private insurers) can dictate or influence levels of care, staffing, and the ways EOL care is provided.10,11 Nursing home administrators and medical staff perceive substantial regulatory disincentives that prevent them from allowing residents to die in the familiar environment of the nursing home rather than in acute care hospitals.12 Although many clinicians support the idea of retaining the dying resident in the home, others are concerned that, given the uneven history of quality of care in nursing homes, failure to transfer nursing home residents to hospitals may restrict access to necessary care and result in unnecessary suffering and hastened death. Staff also may not understand that a do not resuscitate (DNR) order does not imply “do not treat,” resulting in underprovision of medical interventions. Conversely, absence of a DNR order may be misunderstood as requiring hospitalization, resulting in inappropriate or overprovision of care.10-14 Family members are key players in EOL decision-making in nursing homes, especially with respect to transfers,13 yet case studies reveal that family members are confused by medical presentations of care options, and EOL decisions seem to evoke conflict and feelings of guilt among the survivors.15,16 Nurses interpret physicians’ orders for families, but the literature is unclear as to how accurately or well nurses are able to explain those orders.17,18 How family members’ fears and feel-

314

ings influence care decisions in general and transfer decisions specifically is not well covered in the literature. A physician’s order is required, except in emergency situations, to initiate a hospital transfer. However, few nursing homes have 24-hour on-site medical staff.3 As such, physicians depend on the assessment and judgment of the RN or LPN—typically conveyed by the phone—to translate and describe the clinical situation and thus facilitate decision-making. Through such communication, nurses may shape the physician’s decision by the kind and amount of clinical and nonclinical information provided.9 Despite this central role, most studies of transfer decision-making focus on the physician.10,19 DONs generally are not the first-line clinical decisionmakers, but they have the opportunity to reflect on the context and outcomes of decision-making and are responsible for setting performance standards for their nurses. Their responsibilities for retrospective reviews of transfer and other care decisions make them key informants to any study seeking to illuminate nursing home decision-making.The DONs’ invaluable insight into the discourse and processes surrounding transfers provides a rich data set for analysis of this topic.

METHODS This study analyzed decision-making on nursing home-to-hospital transfers from three focus group discussions with nursing home DONs in California, New York, and Ohio. Focus group discussions were tape-recorded, transcribed, and analyzed; information that could identify a particular participant or nursing home was removed. DON participants represented 13 homes: seven nonprofit and six for-profit institutions. Of those, six homes were independently operated and seven were part of multihome systems. Bed capacity ranged from 59 to 300 (mean 100 beds). Geographically, three homes were urban, nine suburban, and one rural. All DONs were women, and three were advanced practice nurses. Their years of experience in the nursing profession ranged from 1 to 38 (mean 8 years). Residents of the represented nursing homes were overwhelmingly white (> 90%). DONs were asked to consider their responses as they applied specifically to dying residents who were not enrolled in a formal hospice program. Focus group questions emanated from major themes that the literature and an expert advisory panel suggested might influence a nurse’s decision-making regarding whether and when to hospitalize a dying resident. Factors included the residents’ clinical status/prognosis, nursing home resources, nurses’ perceptions of institutional policies and concerns, nurses’ interactions with various players in decision-making, nurses’ knowledge of the resident and family, and the nurses’ personal feelings toward patients and beliefs about what constitutes appropriate care. Each focus group was analyzed separately and then compared with the others to identify commonalities across

Geriatric Nursing 2001 • Volume 22 • Number 6

content categories, themes, or patterns.Themes that emerged consistently were analyzed as potential bases for constructing theories of nurse involvement in transfer decision-making.

RESULTS Nursing home DONs strongly believed that, except when technological resources are unavailable, their staff could care for dying residents better than hospital staff. No participant came close to disputing this assumption, which provided the context for all the responses received. DONs believed that nurse recognition of a resident’s changed condition played a pivotal role in the transfer decision.When a resident’s clinical status changes, the nurse’s responsibility is to construct a plan of care within the context of that individual’s wishes rather than simply defaulting to a hospitalization recommendation. Knowing the Resident and Family Participants said discussions about resident wishes occurred at varying points in time before the change in clinical status; the DONs were uncertain, however, if their nurses participated in these discussions. All DONs thought the transfer decision relied less on resident involvement and more on family input at the time of crisis, primarily because most residents lacked the cognitive capacity to communicate effectively. Knowledge of the families’ wishes and preferences was a determining factor in transfer decision-making. DONs discussed transfers primarily in the context of the families’ desires and never separately identified resident preferences from family preferences. One DON said, “We have a consistent philosophy, shall we say. We’ve sat down with the family in most cases—infrequently with the client—the physician, the team, and we’ve all come to an agreement as to what is an appropriate approach for this resident and an understanding that the resident would not likely benefit from acute hospitalization and would most likely, in fact, incur a great loss as a result of acute care hospitalization.” DONs identified several additional factors related to knowing the patient and family that they thought might influence the decision to transfer dying patients to the hospital. These factors include the presence of hospice in the nursing home, nurses’ lack of knowledge of resident and family wishes, families’ expectations and perceptions of what a nursing home was capable of doing/should be doing, family insistence on changing a prior plan of treatment at the resident’s moment of crisis, and lack of decision-making cohesion among family members. Table 1 expands these concepts. Interactions with Physicians Nurse interactions with physicians, according to DONs in all focus groups, were a key element of transfer decisions. Communication of the resident’s care needs occurred through both informal and structured mecha-

Geriatric Nursing 2001 • Volume 22 • Number 6

nisms. If a nurse thought a resident was too ill to be managed appropriately in the nursing home, the DONs’ said nurses might encourage a transfer by the tone with which the clinical information was provided to the physician. Similarly, if the nurse conveyed poor quality clinical information or seemed hesitant in her reporting, most DONs thought the physician would be more likely to order a transfer. One DON said, “I think the physician gets frustrated if he’s not getting information that he wants [from the nurse]…they’re the eyes and the ears of the physician at that point; if they’re not able to offer that information, then in frustration it’s, ‘OK send them out to the emergency room.’” Some nursing homes reported attempts to improve nurses’ assessment skills or created policies whereby only RN nurse managers provided clinical information to physicians. Both changes sought to standardize clinical information transmittal. Other related factors that DONs thought influenced a patient’s transfer to the hospital included the physician’s degree of familiarity with the staff and resident (and consequently reliance on information provided by nurses) and the family and physician’s need for a definitive diagnosis to provide peace of mind and authoritative direction for the treatment plan. Nursing Home Resources Available technological and personnel resources at nursing homes had important implications for transfer in all three focus groups. The represented nursing homes provided a broad range of care resources, from basic to high technology. An important issue for some was the number and type of nursing personnel available: “Frankly, I don’t want to deal with the acuity because it’s a lot of work. If you’re going to talk about hourly vital signs or 2-hour vital signs, if somebody is vomiting or has a temp over 103 or who requires really intensive care services, usually working on a unit—if you’re talking nights or evenings—you could be working with 52 residents and maybe 1 or 2 nurses. So the nurse is not going to want an acutely ill resident who is going to require intensive care services.” Staffing levels emerged as a relevant factor among New York DONs. Ohio DONs vehemently refuted the idea that staff levels influenced transfer; the issue was not mentioned directly in California. Personal and Institutional Liability DONs expressed few direct concerns regarding nurses’ awareness of professional or institutional liability or risk in considering transfer. One DON reported,“I do document the discussion with the physician. It protects myself legally. I do call the medical director and let him know this is what is going on with the resident, and if I do not support the decision of the physician, I would like him to follow up and have further discussion. And I would like him to document in the medical records the discussion [the resident] has had with the physician so that, from a legal standpoint, we are covered. Because

315

Table 1. Knowledge of Resident and Family: Factors that Affect Hospital Transfer Influential Factors

Impact on Resident Transfer to Hospital

The presence of hospice in nursing homes

May increase/improve nurses’ ability to talk about options in EOL care with residents and families

Lack of knowledge of resident and family wishes

May cause conflict for staff regarding feelings of appropriate care, especially in the absence of a designated health care decision-maker

Family perceptions of what home is capable of doing/should be doing

May have a greater influence on a transfer decision than the facility’s actual clinical care capacity

Family insistence on changing agreed plan of treatment at resident’s moment of crisis

May cause transfer, although not in line with previously discussed patient or family wishes

Lack of decision-making cohesion among May cause transfer despite family’s awareness of futility of transfer family members or DON belief a family is litigious and patient’s imminent death

if we need to look or for some reason the family decides to review the medical record, we have no liabilities.” In California and New York, DONs said that, if a family were perceived as litigious, the resident was more likely to be hospitalized.

DISCUSSION As suggested in the literature, DONs believe that nurses influence decision-making through their interactions with physicians and that nurses are on-site surrogates for clinical assessment by the physician. The powerful role of the nurse in the transfer process thus behooves the DON to ensure that staff are appropriately educated in clinical assessment techniques, communication skills, and conflict resolution. An estimated 56% of nursing home residents have some kind of advance directive, although completion rates vary widely within and between states.20 Approximately 80% of nursing home residents have impaired cognition or communication.21 At the time of crisis, such as change in condition and possible hospitalization, residents are said to be less involved in decision-making; family’s wishes are a strong factor and even may supersede the resident’s wishes.22 Widespread public acceptance of the hospice option is transforming the discussion about EOL care. Staff capacity to deal with such care may be a key to reducing the incidence of inappropriate transfer at the end of life. DONs found that the language and style of hospice staff provided a model for staff to gain comfort and skill with these issues. To what extent nursing care changed as a result of this new comfort with talking about the end of life was not clear. DONs thought caring for the dying resident in the home was a nursing responsibility. However, they were divided as to the need for external hospice providers coming to the nursing home or having EOL care provided in the continuum of existing nursing home care. One DON said, “I never found a resident we couldn’t care for. Sometimes I’ve had to call in hospice to deal

316

with the family because they don’t trust what we’re saying or they’re concerned about what they’re seeing is pain rather than just the death process. But I think nursing homes at the level they are now can provide excellent care during the death process if they have good, caring staff and they are well trained.” Increasing the technological capacity of a nursing home was not thought to be the only or necessarily appropriate response to reduce transfer rates. Some DONs thought acute care needs still should be managed in the hospital rather than adding acute care services to a nursing home setting. As one New York DON said, “Philosophically, facilities have to decide what they’re really going to get into. I don’t know that I could really upgrade the skills that much. I’m happy if I can get the IVs done. I don’t know if I want to get into that issue for the resident, and I don’t know if we should ethically. There is still a place in health care for acute care hospitalization.” In their role as chief nurse executives, DONs expressed a specific concern about protecting the institution from lawsuits involving transfer decisions. Although one study6 found no evidence that fear of liability leads nursing homes to practice defensive medicine, DONs perceived that liability risks may alter their interactions with a seemingly litigious family. DONs also suggested that managed care ultimately may decrease the number of residents transferred from nursing homes to hospitals. They expected the reduction to result from more regular physician or nurse practitioner monitoring of residents and managed care requirements for case manager approval of transfers. Further monitoring of managed care’s impact on the nursing home environment is needed to determine if the DONs’ expectations will be borne out.

LIMITATIONS The study’s focus group method elicited rich data that offer a more detailed understanding of the nurses’ role in the transfer process, albeit from the DON perspective. This work, consequently, adds another important

Geriatric Nursing 2001 • Volume 22 • Number 6

piece to our understanding of decision-making regarding hospitalization. No previous study focused exclusively on the nurse’s role in the transfer decision-making process. The findings may be limited somewhat because they are based on DON perceptions, which may not fully reflect the experience, feelings, or perceptions of bedside nurses, particularly the possible differences in perspectives between RNs and LPN/LVN staffs. This study assumes that nurses influence the process by virtue of their position, but empirical evidence was not collected on the level of their impact on transfer decisions. However, the DONs’ strong beliefs regarding the importance of nurses in hospitalization decision-making clearly deserves greater study and would enable additional direction on how DONs can work to improve EOL care.

CONCLUSION Nursing home residents are entitled to quality EOL care, but the best care is multifaceted—including knowledge of the expected trajectory of death and the dying person’s care needs. To address these issues, DONs must attend to staff education and training about the interactions nurses have with residents, families, and physicians. Nurses’ assessment skills will remain a paramount issue that can be resolved only by evidence-based practice standards, quality education, rigorous evaluation, and performance outcome measures. In establishing the values, standards, and expectations of the nursing service, DONs can work with nursing staffs to improve their ability to communicate clinical information to physicians and discuss preferences, risks, and benefits for EOL care with residents and their families, both before and during a medical crisis. The overwhelming importance of family decisionmaking in nursing homes strongly suggests that better development and management of this relationship, perhaps through regular monthly discussions that seek to clearly identify short- and long-term goals of care, will help avoid a decision-making crisis. DONs clearly believe that nurses are the key mediator—and sometimes the de facto decision-maker—for transfers as a result of their 24-hour presence with residents. The benefits of carefully considered decision-making procedures and a trained staff might result in the comfort of all for whom the DON is responsible and accountable. One DON expressed for herself and the field the situation that typifies the standard all are striving for: “As I gain experience in long-term care, the families will ask, ‘What would you do?’ In the old days I would be hesitant to say…but now I say, ‘I think I would just leave the person here because they know all the nurses. We can keep them comfortable.’ I give an honest answer as to what I would do and they accept that.” REFERENCES

2. Mezey M, Dubler NN, Mitty EL, et al. Guidelines for end-of-life care in nursing homes: principles and recommendations. New York: The John A. Hartford Institute for Geriatric Nursing at New York University, Division of Nursing; 2000. 3. Barker WH, Zimmer JG, Hall WJ, Ruff BC, Freundlich CB, Eggert GM. Rates, patterns, causes, and costs of hospitalization of nursing home residents: a population-based study. Am J Public Health 1994;84:1615-20. 4. National Center for Health Statistics. Vital statistics of the United States, 1992, Volume 2: Mortality, Part A, Section 1. PHS 96-1101. Washington (DC): U.S. Government Printing Office; 1992. 5. Brock D, Holmes M, Foley D, Holmes D. Methodological issues in a survey of the last days of life. In: Wallace R, Woolson R, editors. The epidemiologic study of the elderly. New York: Oxford University Press; 1992. p. 31532. 6. Teresi J, Holmes D, Bloom H, Monaco C, Rosen S. Factors differentiating hospital transfers from long-term care facilities with high and low transfer rates. The Gerontologist 1991;31:795-806. 7. Mor V. Hospitalization of nursing home residents: a review of clinical, organizational, and policy determinants. 1998. Available at: www.hartfordign. org/policy/positions/hospitalization.html. 23 March 2000. 8. Creditor M. Hazards of hospitalization of the elderly. Ann Intern Med 1993;118:219-3. 9. Institute of Medicine. Approaching death: improving care at the end of life. Washington (DC): National Academy Press; 1997. 10. Kapp MB. Medical decision-making for older adults in institutional settings: is beneficence dead in an age of risk management? Issues Law Med 1995;11(1):29-46. 11. Kane RS, Burns EA. Cardiopulmonary resuscitation policies in long-term care facilities. J Am Geriatr Soc 1997;45:154-7. 12. Meier DE, Morrison RS. Old age and care near the end of life. Generations 1999;23:6-11. 13. Mann SM, Welk TA. Hospice and/or palliative care? Am J Hospice Palliative Care 1997;14:314-5. 14. Mezey M, Mitty E, Rappaport M, Ramsey G. Implementation of the Patient Self-Determination Act (PSDA) in nursing homes in New York City [comments]. J Am Geriatr Soc 1997;45(1):43-9. 15. Chambers TS, Miles SH, Hunter KM. The case: Voices [and] Ms. Lubell’s complaint (a fictional clinical record) [and] Overview: the whole story. Second Opinion 1993;19(2):81-103. 16. Fried TR, Gillick MR. The limits of proxy decision making: overtreatment. Camb Q Healthc Ethics 1995;4:524-9. 17. Cadogan MP, Franzi C, Osterweil D, Hill T. Barriers to effective communication in skilled nursing facilities: differences in perception between nurses and physicians. J Am Geriatr Soc 1999;47:71-5. 18. Sirett A, Lang F, Doane DG. The effect of determining transfer status on nursing home patients in east Tennessee. J Tenn Med Assoc 1991;84:115-9. 19. Levin JR, Wenger NS, Ouslander JG, et al. Life-sustaining treatment decisions for nursing home residents: who discusses, who decides what is decided. J Am Geriatr Soc 1999;47:82-7. 20. American Health Care Association. Facts and trends. Washington (DC): The Association; 1999. 21. Teresi J, Morris J, Mattis S, Reisberg B. Cognitive impairment among SCU and non-SCU residents in the United States: prevalence estimates from the National Institute on Aging Collaborative Studies of Demential Special Care in the United States. Research Practice in Alzheimer’s Disease. New York: Springer; 2000. p. 117-40. 22. Roberto KA. Making critical health care decisions for older adults: consensus among family members. Family Relations 1999;49:167-75.

MELISSA M. BOTTRELL, MPH, is a project director in New York University’s Division of Nursing in Washington, D.C. JAMES F. O’SULLIVAN, MPH, is the grants manager for the John A. Hartford Foundation in New York. MELISSA A. ROBBINS, MPA, PhD, is a project director for NYU’s Center for Health and Public Service Research in New York. ETHEL L. MITTY, EdD, RN, is an adjunct clinical professor in NYU’s Division of Nursing in New York. MATHY D. MEZEY, RN, EdD, FAAN, in the Independence Foundation Professor of Nursing Education at NYU. Acknowledgment This work was supported in part by a grant from the Retirement Research Foundation. Copyright © 2001 by Mosby, Inc. 0197-4572/2001/$35.00 + 0 34/1/120994 doi:10.1067/mgn.2001.120994

1. Mitty EL. Handbook for directors of nursing in long-term care. Albany: Delmar Publishers; 1998.

Geriatric Nursing 2001 • Volume 22 • Number 6

317