General Discussions

Legacy Letters: A Nurse's Tool for Discussing End of Life

By Kristen Nicastro, RN, BSN, OCN
General Discussions - Discussions
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A few weeks ago, I had the opportunity to present at my hospital's ethics committee on the topic of legacy letters. Although this tool–designed to help patients and their families to address life after their treatment options have been exhausted–is newly on my proverbial radar, the practice of creating such documents, also known as ethical wills, dates back as far as the Old Testament in Genesis 49:1-33 (when a dying Jacob gathers his sons for a final farewell) and is frequently considered a Judeo-Christian tradition. I would argue that although there is an example of this form of final essay in the Bible, they are not at all religious in nature.

As an oncology nurse, one of my daily struggles is helping patients come to terms with the terminal nature of their illness. We have made great progress in the treatment of cancer, and for many, this has resulted in a change from treating the disease as immediately terminal to managing it as a chronic illness.

Sadly, in metastatic disease, eventually we run out of treatment options–they are no longer effective or the adverse effects too grievous. At that point, we are faced with the difficult task of aiding patients through the frightening and emotionally strenuous end-of-life discussions. These dialogues are often poorly received, in part, because with today's ever improving oncology treatment landscape, patients and their families expect that there will always be another treatment available.

The legacy letter can come in many forms and be useful at milestone moments or at times of significant life change. The content could include a person's life story, their wishes for future generations or end-of-life wishes outside of physical interventions.

A great, recent example of a legacy letter was written by our 44th president, Barack Obama. The letter was an address to his daughters while on the campaign trail for his second term of his presidency. Obama chose to include wishes for the next generation (his children and the country's children) at this milestone of his tenure in office:
"These are the things I want for you—to grow up in a world with no limits on your dreams and no achievements beyond your reach, and to grow into compassionate, committed women who will help build that world. And I want every child to have the same chances to learn and dream and grow and thrive that you girls have. That’s why I’ve taken our family on this great adventure."

In situations where patients are struggling to accept the ultimate defeat against their illness and imminent mortality, introducing the idea of a legacy letter may be a chance for them to do something tangible that is non-threatening. Once they have started this process, I believe it could help to open the conversation with their family and medical team about what types of interventions they may want, physically, as the end draws near. Anyone who takes to writing a letter when frustrated, afraid or angry can attest to what a cathartic experience it can be. This idea may give patients some level of comfort and control over what is happening to them.

In recent years, the oncology community has recognized that although we do an excellent job managing this disease and its adverse effects related to treatment, we were missing an important part of holistic care, namely in addressing the psychosocial distress in the patient. Through the efforts of  the American Psychological Oncology Society and the Commission on Cancer, we have made great strides in recognizing and addressing these needs in our patients. 

The legacy letter may offer yet another avenue to process some of the emotional burden of having this terminal illness.

Methods for working this into daily practice are yet to be explored in our clinic, but just informing patients about legacy letters and having some examples on hand could open the conversation. 

Interested in bringing legacy letters into your practice? There are resources available online like Celebrations of Life that even offer templates for purchase and several books written on the subject for those who would like more information.
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