Problem Background
Many palliative and hospice care patients have needed artificial hydration (AH) due to reduced oral intake. Symptoms related to dementia can result in malnutrition, weight loss, dehydration, pneumonia, and aspiration (Baillie et al., 2018). The patient’s relatives can demand the continuation of AH against the practitioners’ advice (Dening et al., 2019).
Medical personnel face an ethical dilemma on whether to persist with artificial nutrition and hydration (ANH), even to the detriment of the patient (Baillie et al., 2018). There is limited evidence on the benefits of artificial hydration for patients in the last days of life. Critics argue that AH increases patients’ vulnerability due to complications, including edema, ascites, and the death rattle (Yokomichi et al., 2022).
Additionally, IV hydration can invoke physical and psychological distress, which impacts patient mobility and their ability to communicate with family and medical personnel (Barrado‐Martín et al., 2020). On the other hand, proponents suggest that hydration often alleviates a patient’s thirst and reduces the risk of delirium (Ballie et al., 2018). Nonetheless, it is not advisable to administer AH for terminally ill patients due to the myriad of consequences that affect the quality of life during the last few days.
The opinion on the value of AH varies according to different caregivers. Most working in palliative or hospice care are more cautious about administering AH, as they do not believe it reduces patient suffering or prolongs survival (Baillie et al., 2018). Nonetheless, some will strongly consider ANH during the final days, especially for patients with dementia (Wu et al., 2021).
It is unclear how much knowledge is available to family members and practitioners. Therefore, there is a reduced comprehension of nutrition management and difficulties associated with AH and the strategies to facilitate intake. The lack of data on ANH is a challenge for healthcare professionals tasked with making crucial end-of-life decisions (De & Thomas, 2019). Therefore, evaluating the rate of ANH administration in palliative and hospice care patients during the last two days of life and the impact on survival or the potential for complications resulting from hydration is essential.
PICOT Question
In terminally ill patients with expected 24-48 hours of life, does artificial hydration improve quality of life, symptom control, and survival compared to those who do not receive artificial hydration?
Systematic Analysis
There are specific adverse outcomes regarding the use of AH. For example, high fluid intake in terminally ill patients can lead to terminal restlessness (Lokker et al., 2019). In turn, Davies et al. (2018) point to a potential role for clinically aided hydration in extending cancer patients’ median survival in their final days.
Wu et al. (2021) stated that AH did not prolong survival or improve the dehydration conditions of terminally ill patients, but it can impact the quality of the dying phase. Communicating with patients and their relatives on the implications of AH can better equip them to adjust to the end-of-life experience (Barrado‐Martín et al., 2020). The biggest hurdle to effective AH administration was the family of the patient, who wanted fluids administered to alleviate suffering and prevent the patient from starving to death (Wu et al., 2022).
In instances where AH was previously being administered, it can be not easy to convince families to withdraw the care. Withdrawing AH can be seen as unethical for patients in the last stages of life. Some physicians will prescribe AH to alleviate the concerns of family members and keep them at peace during the last few days (Wu et al., 2022).
Family exercises emotional influence on both the practitioner and their dying relatives, becoming an essential factor in all conversations about terminally ill patient care. In this vein, AH is used to fulfill a more spiritual role, providing a sense of humane care and dignity to individuals concerned about their loved ones. Despite evidence suggesting that AH has no noted impact on patient survival, practitioners will consent to the needs of the patients or family despite better judgment. Healthcare professionals are therefore expected to inform the families on the role of AH in patient suffering and the implications for quality of death.
The lack of knowledge among family members at the end of life created dilemmas for medical professionals. Due to the adverse effect AH may have on the quality of dying, it becomes more difficult for nurses to go along with the wishes of family members. Barrado‐Martín et al. (2020) stated that nurses were often torn between doing what they considered was right for the family and the best intervention with individuals.
Even healthcare practitioners may disagree on the best course of action, increasing workplace tensions. This evolves into a conflict between colleagues, which impacts the decision-making process. When patients could not make decisions or communicate, such as in the case of dementia, palliative care practitioners had to balance what they were expected to do and what was right.
If the patient can communicate, the nurses must respect their views and assist them with AH. Moreover, the view that withholding ANH was akin to taking someone’s life or giving up on their hopes for survival (Barrado‐Martín et al., 2020). Some doctors could not justify AH but had to go along with the family’s decision to put their minds at peace. The limited literature on the subject results in poor quality of death for patients whose families insist on persisting with interventions that have no notable impact (Dening et al., 2019).
Typically, the decision of the nurse or doctor during a patient’s last days should be paramount. However, with the delicate dynamics of the end of life, the circumstances often supersede the professionals and leave the family to make the best decision for themselves and the patient. Davies et al. (2018) report that patients receiving AH were more likely to experience restlessness when hydration was completed 24 hours before death. The hydration frequency for most patients in the last stages of life has decreased significantly.
Nonetheless, Davies et al. (2018) noted that many patients received AH at the terminal stage. It is attributed to the inclination of practitioners in the hospital setting to choose to provide AH to address families’ concerns compared to professionals in hospice. This could be due to a different diagnostic approach whereby hospice professionals better understood the dynamics of palliative care and the importance of the quality of death. There are some exceptions where the ANH may be considered a beneficial intervention, such as for late-stage cancer patients with good performance status. At the same time, De & Thomas (2019) assert that hydrated and non-hydrated patients experience similar rates of symptoms attributed to hydration.
Withholding AH leads to reduced urine output, which is associated with reduced instances of incontinence and catheterization. Research also suggests a linked reduction of gastrointestinal secretions, which reduces the possibility of nausea and vomiting. Further, there is a significant reduction in secretions from the respiratory tract, coughing, and the need for suction in patients who do not take artificial fluids. Researchers, such as Fainsinger (2019), provide several benefits, such as reducing their susceptibility to cerebral and peripheral edema.
The potential burdens for ANH depend on the route of administration used and could include sepsis, diarrhea, pressure sores, and skin breakdown. Further, patients undergoing AH may need to be physically restrained to prevent them from forcibly removing a central or peripheral intravenous line and a gastronomy tube. On the other hand, the advantages of AH administration are alleviating complications such as agitation, delirium, and confusion (Wu et al., 2021). Nonetheless, there is limited data to indicate these benefits for all patients conclusively and associated positive outcomes for palliative and hospice care patients.
National and sociocultural factors influence eating habits and may play a role in the administration of ANH. Financial factors like the staff and resource shortage in Israel and the policy for reimbursing facilities that use PEG in Japan impact the decision on whether to administer ANH to terminally ill patients. In the US, weight monitoring in some care homes penalized weight loss, and therefore, doctors could withhold AH in the last days of life (Lokker et al., 2019). Further, the lack of clear legislation and guidance impacted the frequency of AH, particularly on the potential for lawsuits in case the practitioner withheld hydration from the patient (Wu et al., 2022). The cultural context around palliative care in different countries, for example, the greater emphasis on the wishes of families over the needs of the patient in Japan, determines the possibility of the doctor prescribing AH.
There are mixed results on the impact of religion on the implementation of AH. Notably, some minority communities, such as African Americans in the United States, favored using ANH (Barrado‐Martín et al., 2020). The decision of the medical practitioners in such instances is limited, and they must respect the wishes of the patients and their families. The main challenge is finding a balance between the decision-making of all parties involved, especially in managing the quality of the individual’s death.
Implications for Practice
The implications of AH on palliative and hospice care patients are valuable, especially in the context of end-of-life decisions. The needs and preferences of a patient may change drastically, and therefore, the healthcare team needs to be prepared to make critical decisions that will determine the quality of death. Practitioners with a better understanding of end-of-life care principles are vital to supporting families (Dening et al., 2019).
However, in some countries, such as the United States, nurses lack the confidence to support families of palliative and hospice care patients. The limited scope of understanding of the dynamics of death and dying and the limited literature on the impact of ANH among patients’ families require a more focused empirical assessment (Barrado‐Martín et al., 2020). Professionals and families consider the positives of AH, such as life extension, weight maintenance, and preventing patient starvation.
Scholars have suggested that higher knowledge among patients’ families decreased the incidence of ANH for terminal patients. The nurse can advise the family on the best way to ensure the comfort of the patient and the value of withholding specific interventions to ensure a better quality of death. The right thing to do for the patient should be paramount to such decisions, and therefore, the nurse should manage the family’s expectations with the best outcome for the patient (Shih et al., 2021).
More focus should be on sustainable ways to support nutrition and hydration in the terminal stages, especially for patients under home care. The difficulties and successes of carers for dementia patients should be used as benchmarks for increasing emphasis on formal care services. Learning about ANH and the surrounding cultural contexts is vital to reducing the implications for physicians and others involved. Finally, there is a need for more research on dementia patients, their preferences for end-of-life care, and the approach toward advanced care planning.
References
Baillie, J., Anagnostou, D., Sivell, S., Van Godwin, J., Byrne, A., & Nelson, A. (2018). Symptom management, nutrition, and hydration at end-of-life: A qualitative exploration of patients’, carers’ and health professionals’ experiences and further research questions. BMC Palliative Care, 17(1). Web.
Barrado‐Martín, Y., Hatter, L., Moore, K. J., Sampson, E. L., Rait, G., Manthorpe, J., Smith, C. H., Nair, P., & Davies, N. (2020). Nutrition and hydration for people living with dementia near the end of Life: A qualitative systematic review. Journal of Advanced Nursing, 77(2), 664–680. Web.
Davies, A. N., Waghorn, M., Webber, K., Johnsen, S., Mendis, J., & Boyle, J. (2018). A cluster randomized feasibility trial of clinically assisted hydration in cancer patients in the last days of life. Palliative Medicine, 32(4), 733–743. Web.
De, D., & Thomas, C. (2019). Enhancing the decision-making process when considering artificial nutrition in advanced dementia care. International Journal of Palliative Nursing, 25(5), 216–223. Web.
Dening, K. H., Sampson, E. L., & De Vries, K. (2019). Advanced care planning in dementia: Recommendations for healthcare professionals. Palliative Care: Research and Treatment, 12, 117822421982657. Web.
Fainsinger, R. L. (2019). Support for hydration at end of life. Handbook of Nutrition and Diet in Palliative Care, pp. 169–178. Web.
Lokker, M. E., van der Heide, A., Oldenmenger, W. H., van der Rijt, C. C., & van Zuylen, L. (2019). Hydration and symptoms in the last days of life. BMJ Supportive & Palliative Care, 11(3), 335–343. Web.
Shih, Y. A., Wang, C., Jin, S., Feng, W., & Lu, Q. (2021). Decision making of artificial nutrition and hydration for cancer patients at terminal stage: A systematic review of the views from patients, families, and healthcare professionals. Journal of Pain and Symptom Management, 62(5), 1065–1078. Web.
Wu, C. Y., Chen, P. J., Cheng, S. Y., Suh, S. Y., Huang, H. L., Lin, W. Y., Hiratsuka, Y., Kim, S. H., Yamaguchi, T., Morita, T., Tsuneto, S., & Mori, M. (2022). Association between the amount of artificial hydration and quality of dying among terminally ill patients with cancer: The east asian collaborative cross‐cultural study to elucidate the dying process. Cancer, 128(8), 1699–1708. Web.
Wu, C.-Y., Chen, P.-J., Ho, T.-L., Lin, W.-Y., & Cheng, S.-Y. (2021). To hydrate or not to hydrate? The effect of hydration on survival, symptoms, and quality of dying among terminally ill cancer patients. BMC Palliative Care, 20(1). Web.