Improving Nursing Home Care of the Dying
by Martha L. Henderson, MSN, Dr Min; Laura C. Hanson, MPH, MD; Kimberly S. Reynolds, MPA
Springer Publishing Company 11 West 42nd Street, 15th Floor New York, NY 10036
Tele: 212-431-4320
Web site:http://www.springerpub.com
ISBN:0-8261-1925-5
Price: $36.95
Recently, I had the opportunity to help a family friend care for a dying father. After I arrived, I found that symptom control was good, but the family was exhausted by the day-to-day care. Initially, he had only a condom catheter, which leaked and resulted in the need for frequent baths and linen changes. Family members were vigilant in keeping their father dry for comfort and prevention of skin breakdown; however, being "on call" 24 hours a day was exhausting.
Like my family friend, many families' goal is to take their loved ones home to die. However, when caregivers make that decision, they are not aware of exactly what will be required if the patient does die at home. Hospice services are excellent at providing medical and psychosocial care, but the family is often called upon for the kind of hands-on care usually provided by trained professionals. This places family members in an awkward position-wanting to care for their loved ones, but feeling unprepared and at times embarrassed to provide this care.
The alternatives available are either to hire personal care providers to come into the home, which can be costly, or place a person into a long-term-care facility. As the need for 24-hour care providers increases, there is a demand to improve the quality of care in nursing homes. This is especially true when dealing with end-of-life care, because it is such an important time in a patient and family's life.
Improving Nursing Home Care of the Dying is a resource for training material related to end-of-life care that could be beneficial in a variety of healthcare settings, including nursing homes, acute care hospitals, and hospices. The authors have used their expertise in geriatrics and palliative care to create a teaching plan for end-of-life care.
The book is divided into eight lessons including: Envisioning a Good Death, Recognizing the Final Phase of Life, Grief and Loss: Understanding and Supporting Families, Advance Care Planning, Choices About Eating and Drinking, Pain Management, Emotional and Spiritual Care, and Caring for the Caregiver: Taking Care of Yourself Emotionally. Each lesson is divided into an overview, general information, conclusion, case-based example, issues to consider, action plan, and annotated bibliography. The book concludes with 105 pages of appendices including the following: Prognostic Guidelines, Approaches to Pain Assessment and Treatment, Advance Care Planning Booklet for Nursing Home Residents, Advance Care Planning Booklet for Families of Nursing Home Residents, and Participant Handouts.
Overall, I was impressed with the quality and accuracy of the information. I was encouraged to find that the book discusses the benefits and burdens of hydration at the end of life in both Chapter 2, Recognizing the Final Phase of Life, and Chapter 5, Choices About Eating and Drinking. The authors recommended "consideration of a short trial of IV fluids and/or an appetite stimulant to improve his dehydration and resulting confusion," illustrating recent evidence about when hydration is beneficial to some patients at the end of life.
In Chapter 4, Advance Care Planning, they discuss the idea of a trial on a ventilator to see if survival is possible. They emphasize that it must be a time-limited trial if the patient did not want to be maintained on life support. This concept, as well as the hydration concept, mirrors the idea of "acute palliative care," that is, interventions to prolong life may also promote a better quality of life.
Chapter 7, Emotional and Spiritual Care, was very well written. So many of us are uncomfortable discussing spirituality and religion, but this book suggests specific things to say to a patient experiencing spiritual distress, such as "I know this is hard for you," and "What do you think?" These phrases show empathy and allow patients or family to search for their own understanding and meaning of spirituality.
There were a few areas of concern related to the information provided in Improving Nursing Home Care of the Dying. One area to be cautious about is in Chapter 4, in the information for Nurse Practitioners, Physician Assistants and Physicians regarding writing "Do Not Resuscitate" orders. States vary in their regulations about who can write a DNR order so this content needs to be tailored to the educator/learner's state.
Additionally, the authors suggest megestrol acetate for appetite stimulation but failed to mention the increased risk for thromboembolism. I think some discussion about cachexia in the chapter "Choices About Eating and Drinking" would have been an appropriate topic to include.
Finally, although the patient's report is the "gold standard," patients in nursing homes are often cognitively impaired and not all assessments should be based on just the patient's report. Likewise, the elderly should be assessed for delirium and somatization. This concept is frequently missed in practice, and it is also an oversight in this training manual.
Overall, this book is a good practical resource to help educate certified nursing assistants, nurses, and physicians about end-of-life care. Any healthcare provider could take this book and be able to present the eight different lessons. The lesson plans are well thought out with applicable case studies. The annotated bibliographies are excellent resources if further information is needed for a topic. Improving Nursing Home Care of the Dying is a must-have book for all educators providing training related to end-of-life care.