Contributor: Judith Pare

The universality of death is a widely accepted phenomenon that many nurses deal with on an almost daily basis. The World Health Organization (2005) has stressed the importance of expert palliative and hospice care as a critical caring global need for people with heart failure, cancer, and other progressive terminal illnesses. For nurses like me with more than forty-years of nursing experience, caring for people with progressive neurological illnesses appeared to be a normal part of life. However, in 2021 my husband was diagnosed with metastatic kidney cancer and as his illness progressed, he became progressively resistant to talk about his wishes regarding end-of-life and how he wanted to be remembered. I found myself trying to “pull” information from him regarding medications to manage his pain or details surrounding the music that he wanted his family to hear at a celebration of life. My husband died in July 2022 and although some of his wishes became apparent, I was left with many questions regarding what might have been different if his care team knew more about his wishes. During the two-years that followed death, I dealt with my own grief and was reminded of the tools that exist for nurses who are searching for strategies to support patients and families caring and coping with end-of-life issues.

Humanistic Nursing Theory

The progression of humanistic nursing theory (HNT) can be described as incarnate men [sic] (Zderad, 1976). HNT encompasses several fundamental philosophies that are aligned with the art and science of palliative and hospice nursing. The theory emphasizes individuality and the reality that each of us exists uniquely in a present situation (Wu & Volker, 2011). Consequently, each of us reacts uniquely to occurrences that pertain to self, others, and the surrounding environment. The reality of our unique life experiences influences how each of us approaches our own end-of-life reality. The perspectives of nurses and patients are equally valued within the HNT. The patient is referred to as the nursed (person-as-patient), whereas the nurse is the person nursing (person-as-nurse) (O’Connor 1993). Paterson and Zderad (1976) described the process of nursing as an intentional ‘call and response’ in which the nurse responds to the call by caring for the person who has an unmet physical, emotional, and/or spiritual need (Wu & Volker, 2011).

HNT also recognizes the unique capacity, and free-will that human beings have to respond to situations that they encounter. Paterson and Zderad (1976) recognized individuals can draw on the process of self-reflection to understand past experiences and utilize these experiences to gain deep self-understanding. The hospice or palliative care nurse can support the patient, with understanding and education to achieve the meanings and values associated with end-of-life experiences. This process of self-reflection will allow the nurse to also achieve a deep understanding of these lived experiences. The Five Wishes resource provides a tool that allows patients, families, and nurses to achieve insight and understanding surrounding the importance of honoring end-of-life wishes.

Five Wishes

Five Wishes is a legal document that was created to provide a tool for individuals to express their wishes in advance of a serious illness. The document is available in 31-languages, and it is the only advance care planning document in the US. The result of a 12-year collaboration Jim Towey utilized Mother’s Teresa’s guidance to create a Five Wishes pathway for patients and their families to cope with and plan for serious illness (Aging with Dignity, 2024). In the spring of 2024, I began the process of becoming a nationally certified presenter for Five Wishes which has allowed me to better understand the essence of hospice and palliative care and the usefulness of HTN as a theoretical foundation for that care.

Wish One: Identifying a Healthcare Agent

Identifying the person that I want to make healthcare decisions for me when I can no longer make them for myself.

Nurses play a pivotal role in educating patients about the role of a healthcare agent. The patient should be freely guided to select a person who understands their wishes and will advocate for those wishes when the patient is unable to advocate for themselves. This step encourages the patient to also name alternate healthcare agents if their first choice is not able or willing to fulfill this role.

Wish Two: Identifying the Medical Treatment the Patient Wants or Does Not Want

This wish provides the nurse a valuable opportunity to support the patient’s reflection on the medical treatment that they may or may not choose to accept. The nurse’s role as a caring and compassionate advocate, is to provide evidence-based education and to reassure the patient that the choices that they make should be based upon their personal wishes. The correct choices are those that honor the patient’s wishes regarding physical care, the offering of food and fluids, and the presence or absence of medical device such as respirators to sustain life.

Wish Three: My Wish for a Level of Comfort

The fear and realities surrounding pain at the end-of-life are often overwhelming for the patient, and their family members. The nurse’s role as an advocate for the patient to the healthcare team is critical. Some patients may want medications to alleviate all pain even if that results in a lack of awareness or excessive sleep. Other patients may choose to “be present” with pain, so that they may interact with loved ones. The nurse must voice the patient’s wishes even if they may be in opposition to the wishes of family members or care providers.

Wish Four: For How I Want People to Treat Me

During the end-of-life process many people find solace in knowing that they are not alone. Handholding and praying are some of the details that can be found within this wish. However, the nurse may need to remind family and caregivers if the patient’s wishes asked for solace and quiet during their final hours. Fulfillment of this goal is supported by the shared goal of the HNT which reminds us that the nurse role is to be ‘open-as-a-helper’ to the patient so that they both can achieve well-being and more being (Paterson & Zderad 1976, p. 28).

Wish Five: My Wish For What I Want My Loved Ones to Know

The Fifth Wish focused on the individuals wish for how they want to be remembered by loved ones and specifics surrounding “after death” arrangements including, funeral, cremation, and requests for memorial contributions. The patient can be as specific or general as they choose regarding issues that may include organ donation, music to be played at a funeral or memorial service and requests for family members to look at their dying as an opportunity for personal growth and memories that fill them with joy not sorrow.

There are specific state requirements that may require the patient to sign the document with witnesses or having the document notarized at the time of signing. Patients are encouraged to seek out a social worker or patient advocate in their state of residence for those details. Once the document is signed, the nurse should instruct the patient to store the original in an easily accessible location and to share copies with their health care providers and the individuals they named to be their healthcare agents.

Summary

Currently, more than 42-million copies of Five Wishes are in circulation across the US. This humanistic resource is supported by the values and goals of hospice and palliative care. The HNT is an appropriate framework to guide nurses in sharing this resource with patients and families who are living with the stressors of progressive serious illnesses. The theory offers nurses a unique opportunity to provide empathetic care that allows persons facing the end-of-life a final opportunity for more-being and spiritual growth (Vassallo, 2011).

About Judith Pare

Judith Paré, PhD, RN, RHNC, is an experienced nurse educator, clinical professor, and RN/BSN program director at the University of Massachusetts-Boston (UMB).

Judith’s areas of expertise include rural nursing, psychiatric nursing, and community health. Judith is a published author and a national speaker on Alzheimer’s care and the lived experiences of rural and remote nurses. In 2024, Judith co-authored Rural Healthcare and the Pandemic: Challenges, Solutions, and Future Needs. This undergraduate nursing and public health textbook is designed to provide insight into the lived experiences of rural bedside nurses during and beyond the COVID-19 pandemi

Resources

Aging with Dignity. (2024). Five wishes. Retrieved from: www.agingwithdignity.org

Paterson, J. G., & Zderad, L. T. (1976). Humanistic nursing. National League for Nursing.

Vassallo, B. M. The spiritual aspects of dying at home.” Holistic Nursing Practice, 15(2), 17-29.

World Health Organization. (2005). Cancer control: Knowledge into action: WHO guide for
effective programmes: Palliative care. who.int. Cancer control: Early detection

Wu, L., & Volker, D. L. (2012). Humanistic nursing theory: Application to hospice and
palliative care. Journal of Advanced Nursing, 68(2), 471-479. https://doi.org/10.1111/j.1365-2648.2011.05770.x