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If It Were You Who Were Dying
A 2004 focus group study of terminal care in nursing homes (NHs) documented that one in four Americans who reside in long-term care (LTC) facilities will die in this setting, yet little effort is put into emphasizing the importance of addressing the barriers that exist to attain high-quality care of the dying in the nursing home setting.1 As reimbursement incentives result in decreased use of hospital days, NHs are becoming an even more common site for end-of-life care. In addition, a goal of many NH clinicians is to treat an elderly person in the NH as much as possible as opposed to transferring the patient to unfamiliar surroundings, such as an acute care setting in which preexisting medical conditions may worsen. Delirium, falls, unnecessary restraints, infections, and increased confusion may often result during the transition.
The importance of palliative care training in LTC facilities has increased, as hospitals have become less favored as sites for terminal care. After supervising and interviewing NH staff in a 180-bed skilled NH facility, along with reviewing several meta-analyses on the topic, there is overwhelming evidence to suggest that nursing staff caring for the elderly are often unprepared to provide quality “end-of-life” care for their patients. This lack of knowledge exists across the board: registered nursing supervisors, licensed practical nurses, and “hands-on” caregivers who provide the majority of the direct care, the nursing assistants. The NH administrative team must be held responsible for this glaring deficit if they are unwilling to address the problem or reluctant to provide the funds for staff education or wages for additional staff to provide “in-house hospice” care to their dying residents.
A lack of awareness of palliative care principles such as pain management; communication skills between the patient, doctor, nursing staff, family, social worker, and multidisciplinary team; bereavement skills; and strategies for working with dying patients exists among a majority of NH staff.2 The importance of quality palliative care must be addressed and/or mandated by state regulation in order to improve the quality of care that our elderly patients deserve. Improvement in end-of-life care would improve family satisfaction with the overall NH experience.3 State and federal mandatory in-services for LTC settings in the state of Pennsylvania consist of topics such as handwashing, foot and nail care in the elderly, workplace violence, fire and safety, disaster preparedness, HIPAA, and other topics of little relevance to the quality of care.4
If a semi-annual palliative care in-service were imposed that included key indicators that prevent our elderly population from dying in ways that no one would want to die (ie, in pain, alone, frightened, uncomfortable), the quality of care in our NHs would increase substantially, and family members and patients would be much more at ease. Administrators, supervisors, nurse educators, and social workers should educate and empower the staff to be sensitive not only to the physical symptoms of the dying elderly individual, but to the management of the psychological impact of death on the surviving residents and their family members.5 When speaking to licensed and certified nursing staff, all were very receptive about the needs and benefits of education with regard to palliative care.
Because of the long-term relationships they have developed with their patients, they feel that it is not appropriate when an outside hospice company is contracted to come into the facility to provide end-of-life care for a person they have taken care of for a number of years. On the other hand, some staff members feel that their emotional attachments are too strong and would not like to participate in the death and dying process. Licensed staff voiced some hesitation about administering pain medications, fearing that these might hasten one’s death. Perhaps the reason that older adults do not want to be admitted to a NH is not because they are going to die, but because they fear how they are going to die—most likely alone, probably in pain, with incompetent, undereducated staff, in a flimsy blue and white hospital gown, lying in feces, urine, and other bodily substances, and most importantly, frightened.
We all know the stereotypes and stigma attached to NHs, and how they are sometimes jokingly referred to as “Stairways to Heaven,” “Rest (in peace) Homes,” from “Nursing Home to Funeral Home,” etc.6 If it is likely that NHs are going to become a common place where individuals spend their last days, shouldn’t the primary focus, one of the specialties, be to provide first-rate, end-of-life care? There is only one guarantee in life: death. If it were you who were dying, wouldn’t you want the people taking care of you to know what they are doing?
The author reports no relevant financial relationships.
Ms. Melle-Green is a graduate student in the Adult/Geriatric Nurse Practitioner Program at the University of Pennsylvania. She has more than 18 years’ experience in long-term care, with her main focus being to improve the quality of care for elderly persons.
References
1. Lopez RP. Suffering and dying nursing home residents: Nurses’ perceptions of the role of family members. J Pall Med 2007;9(3):141-149.
2. Ersek M, Kraybill BM, Hansberry J. Investigating the educational needs of licensed nursing staff and certified nursing assistants in nursing homes regarding end-of-life care. Am J Hosp Palliat Care 1999;16(4):573-582.
3. Hanson LC, Henderson M, Menon M. As individual as death itself: A focus group study of terminal care in nursing homes. J Palliat Med 2002;5(1):117-125.
4.Rantz MJ, Popejoy L, Petroski GF, et al. Randomized clinical trial of a quality improvement intervention in nursing homes. Gerontologist 2001;41(4):525-538.
5.Whittaker E, Kernohan WG, Hasson F, et al. The palliative care education needs of nursing home staff. Nurse Educ Today 2006;26(6):501-510. Published Online: March 6, 2006.
6. Ayalon L, Arean P, Bornfield H, Beard R. Long-term care staff beliefs about evidence-based practices for the management of dementia and agitation. Int J Geriatr Psychiatry 2009;24(2):118-124.
