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When does dying begin? The answer to this pivotal question will often determine when patients receive hospice care. Many hospice nurses have had the difficult experience of trying to explain the benefits of hospice care to a family who views choosing hospice as "giving up."

 

Guide to Caregiving in the Final Months of Life communicates three essential concepts to families of prospective hospice patients: (1) patients who experience certain symptoms, related to aging, are unlikely to recover; (2) hospice care is the best choice for these patients; and (3) there is research (supported by the National Hospice and Palliative Care Organization) to prove that patients who received hospice care actually lived longer than those who did not.

 

Although a 2004 study, supported by the Agency for Healthcare Research and Quality, found that the number of elderly patients dying in the hospital has decreased from 44.4% to 39.3%, the probability of those same hospitalized elderly patients being admitted to intensive care increased from 38% to 39.8%. Elderly patients receiving cardiopulmonary resuscitation also increased from 17.8% to 30.3%. Once admitted to the hospital, terminal elderly patients are more likely to receive aggressive care that may, in turn, increase their suffering and likely prove futile.

 

The challenge for the hospice admission nurse is to provide the prospective hospice patient's family with the evidence-based research to help them understand how close their loved ones may be to dying. This challenge is compounded by the fact that anxious families can hear only about a third of what is being said to them. Written information may be more helpful since it is something to which they can refer and share with other family members. Until families can conclude that meaningful recovery is unlikely, they will continue to refuse hospice care and continue to pursue aggressive measures such as hospitalization, CPR, and artificial feeding despite the fact that these will ultimately be futile.

 

Guide to Caregiving in the Final Months of Life is the first book of its kind designed to help the reader identify when dying actually begins. The book is written in an easy-to-understand language, helping the reader to break down and digest complex medical information. It paints a picture of what a downhill trajectory looks like and why it is usually not reversible. It reviews common medical symptoms such as weight loss, progressive weakness, and confusion and why these events may be indicators of increased mortality. It also reviews illnesses commonly experienced by the elderly, such as aspiration pneumonia, sepsis, and organ failure, and why further decline can be expected in their aftermath. It provides specific examples of patients and cites resources that are available to assist the family in making difficult decisions such as hospital ethics committees, chaplaincy services, and the Alzheimer's Association. Finally, the book walks the reader through the process of caring for someone who is actively dying, offering practical tips to caregivers on pain management, skin care, loss of bowel and bladder control, and how to communicate with their loved ones. It answers the most common questions about caregiving for families, reducing their anxiety and the volume of anxiety-related telephone calls placed to the hospice nurse. It ensures that the short-stay hospice patient's families have all the reference information that they will need to be successful in caregiving.

 

Betsy Murphy, author of the book, worked for a hospice for 23 years, as a nurse, in marketing, and as a vice president. She was educated as a family nurse practitioner and is certified as a hospice and palliative care nurse and a member of HPNA. She served on the board of the Alzheimer's Association of the National Capital Area for 11 years and developed materials and strategies for this underserved population to access hospice care.

 

Guide to Caregiving in the Final Months of Life is a 64-page book and costs $5 per copy and can be purchased from NHPCO marketplace, Amazon.com, and http://www.GuidetoCaregiving.com, where prices on bulk orders are deeply discounted. It is published by TM Brown Publishers at 21200 Hibbs Bridge Road, Middleburg, VA 20117. The author, Betsy Murphy, can be reached at [email protected].