Courage, Leadership, and End-of-Life Care

When Courage Counts

Karlene M. Kerfoot, PhD, RN, CNAA, FAAN

Disclosures

Nurs Econ. 2012;30(3):176-178. 

In This Article

The Best Care for Patients and Their Families

We have far to go. However, there are options. For many patients and their families, death is treated as a failure and an unanticipated consequence of living. We prepare so little for such a meaningful event in our lives. By contrast, when babies are born, parents often spend considerable time researching and learning about the birth experience and come to us with defined birth plans and tell us exactly how they want to orchestrate that experience. Hospitals build very attractive units with the option of birthing rooms, midwives, and in some cases hot tubs and other alternative practices and rituals. By contrast, very few people come to us with end-of-life plans and advanced directives, and we seldom probe to determine how the patient really wants to die. We assign specialized nurses to the birthing process and other journeys through the health care system such as surgery or heart disease. However, we do not regularly have specific nurses as we do in specialized areas such as cardiac and oncology who are experts in the processes at the end of life to attend to the patient and family when the sacred cycle of transitioning from living to dying occurs. We have elegant birthing rooms but do not have a beautiful, special place for patients and families to celebrate the "passing." Families withdraw because they don't have the kind of skills that we provide people in the birth experience with prenatal classes. Often the patient is left physically and emotionally alone with a staff that can also be untrained and uncomfortable caring for someone in his or her last days. It doesn't have to be this way.

We can help patients and families orchestrate a beautiful experience that is an alternative to futile, expensive end-of-life care. There are many options. For example, the Respectful Death Model is a research-based model that supports patients, families, and also the professionals involved in the completion of the life cycle (Wasserman, 2008). There is no need for patients to transition in efficient, high-tech rooms where it is often not acknowledged that the patient is in the process of dying. Keegan and Drick (2011) write about establishing golden rooms where patients, families, and caregivers can focus on the work of passing through this life in beautiful memorable surroundings. The opportunity to accept any and all visitors as the patient and family wish should be facilitated for patients who cannot die at home. Visitations with children are important to provide the sense of joy and well-being that is important to patients, families, and the staff (Falk, Wongsa, Dang, Corner, & Lobiondo-Wood, 2012). With the "White Rose" program a white flower on the door signals to the staff and visitors the patient and families are doing the work of transitions and need to be supported appropriately (Ramos-Martinea, 2012). Palliative care programs combine the beauty of a peaceful end-of-life experience with the cost effectiveness of this care (Byock, 2012). Ensuring patients have access to these programs is difficult because of the shortage of trained professionals, but courageous leaders will find a way to implement the principals of this care into their institutions.

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