Introduction. The provision of artificial hydration (AH) for the terminally ill patient at the end-of-life is a controversial topic. Terminal dehydration (TD) at the end-of-life is a common occurrence in the hospice patient. The decision to withhold or administer fluids varies significantly between care-giving settings. Many factors contribute to the decision, including the patient’s wishes, diagnosis, availability, etiology of dehydration, goals of care and potential benefits and risks. In addition, other factors include that nurses report that withdrawing or withholding nutrition and hydration at end-of-life as contributing to moral distress of nurses and a common end-of-life dilemma for patients, families and nursing staff.
Insufficient evidence exists to determine the most beneficial decision for all patients in terminal care. Evidence exists both to support administration of fluids as symptomatic relief in some cases, and also that hydration may not have beneficial effects in some cases. In addition, the decision to withhold or give fluids is most commonly determined by location of care rather than individual decisions or situations. Hospice patients tend not to receive hydration at end-of-life, while those in hospital acute care tend to receive hydration. Furthermore, nurses are frequently asked to advise patients and family members regarding this decision, and they require solid, evidence-based information from which they can inform families of the usefulness of hydration during end-of-life situations. As a result, the research question of this study is, what is the hospice nurses’ perception of terminal dehydration? The approach used in this study is the Peaceful End of Life theory, which assumes both that end-of-life decisions are personal, and that nursing care is essential in creating a peaceful end-of-life experience.
Literature Review. Hospice care differs substantially from hospital care in that the focus is on holistic caring rather than curing, and includes attention to spiritual, emotional, and social needs as well as physical comfort issues, including needs of family members. Care may be received at home, in long term care facilities, or in a variety of other facilities. Palliative care is employed prior to hospice care, but has similar holistic approaches to caring rather than attempting a cure. It is also patient and family oriented and focuses on optimizing the quality of life by addressing symptomatic relief, supportive patient and family care, and informed end-of-life decision-making. Most typically, both hospice and palliative make use of family or friends as significant caregivers, in conjunction with a team of experts for care planning according to patient need.
Terminal care situations occur, as noted in the Liverpool Care Pathway for the Dying, when the patient’s condition worsens to the point where he or she can no longer swallow, may be semi-comatose, is bedfast, is unable to swallow pills, and may experience restlessness, breathlessness, nausea, and pain. This stage typically lasts hours to days, and may include unconsciousness only in the final hours of life, though unconsciousness can last longer. It is during this terminal phase that patients may experience TD. TD is defined when sodium loss equals fluid loss. In medical models this has the consequence of renal failure and is treated with IV fluids; in hospice care, only uncomfortable symptoms are treated.
Deciding whether to withhold fluids from a dying patient involves issues of emotional attachment, patient suffering, patient’s previously stated wishes, and moral ambiguities, issues that tend to polarize people and organizations. Hospice associations have stated that the decision should be left with the care team, and made in accordance with the patient’s previously stated wishes. This is because in some cases excessive fluids can cause symptoms in dying patients that may be more troublesome than TD itself. Rehydration may also simply prolong the patient’s dying process and increase overall suffering, as well as placing additional physical barriers (e.g., IV lines, equipment, etc.) between patient and loved ones.
Those who favor rehydration argue that it rebuilds strength and prolongs life, although evidence is lacking for prolongation in end-of-life situations. Some also claim that this is below the minimum acceptable level of care, and that it results in withholding other beneficial therapies. This argument is refuted by studies which demonstrate no prolongation of life with artificial hydration, and increased suffering experienced by patients associated with rehydration.
Nurses attending end-of-life patients may experience moral distress as a result of participating in care decisions they perceive as futile. This results insecurities, uncertainty of colleagues’ responses, and may result in a loss of focus on providing best care for the well-being and dignity of the patient. Family caregivers are even more distressed by such the TD decisions for similar reasons as well as issues such as social isolation, lack of spiritual support, and loss of communication with the patient and loss of control. Applying biomedical ethics to such decisions can help guide TD decisions by considering autonomy, beneficence, non-maleficence, and justice. End-of-life care is insufficient, though improving in U.S. nursing curricula. By improving this educational effort, it may be possible to make decisions about issues such as TD consistent at all levels and situations for quality care.
Methodology. This study is a quantitative descriptive study to investigate hospice nurses’ perceptions of end-of-life dehydration. This study will consist of a survey of approximately 20 nurses currently employed in hospice care in a U.S. Midwestern region. The study will be an online survey using a previously validated instrument. Permission to use this instrument has been received. Consent to Participate and all human rights of the participants will be protected, as well as their anonymity maintained.