End of Life Care End-of-life (EOL) care encompasses a range of planning, choices, and actions that affect individuals facing terminal illness or advanced age. The complexity of EOL care involves considerations of medical, ethical, legal, and personal factors, as well as the emotional and psychological needs of both patients and their families. This paper explores various aspects of EOL planning, health care perspectives, nursing research on dying care, hospice care, the self-care deficit model, legal aspects of life-sustaining care, and the limitations of nursing research in this critical area.
End-of-Life Planning and Choices
Understanding EOL Planning
End-of-life planning involves making decisions regarding the types of medical treatment an individual wishes to receive or forgo when facing terminal illness. This can include creating advance directives, appointing a health care proxy, and discussing preferences with family members. Research indicates that individuals often find it difficult to engage in these discussions due to emotional barriers, fear of discussing death, and uncertainty about what choices to make.
Factors Influencing Decision-Making
Research has shown that various factors influence EOL decision-making, including:
- Patient Autonomy: Individuals generally wish to have control over their medical decisions, leading to a desire for advance directives and appointed proxies.
- Family Involvement: Family dynamics play a critical role in EOL decision-making, as individuals often consult family members or rely on them to make decisions when they can no longer do so themselves.
- Cultural Considerations: Different cultural backgrounds influence attitudes toward death and dying, affecting decisions around EOL care.
Health Care Perspectives
The Role of Health Care Providers
Clinicians, ethicists, and legal scholars emphasize the importance of appointing someone to make decisions for an individual when they lose the capacity to do so. This process can be less cognitively demanding than creating detailed living wills, which require anticipating future medical scenarios.
Research is limited regarding how nurses assess a patient’s decision-making capacity concerning life-sustaining treatments. Molloy et al. (1996) examined the ability of individuals in various care settings to create an advance directive and found that certain standardized assessments could differentiate those capable of making informed decisions from those who could not.
Capacity Assessment Tools
Mezey et al. (2000) developed guidelines to assess nursing home residents’ capacity to choose a health care proxy. This tool demonstrated validity and reliability, revealing that many cognitively impaired residents still had sufficient capacity to make such decisions.
Nursing Research on Dying Care
The Current State of Research
Nursing research on EOL care has grown in response to the increasing complexity of patient needs. A study by Schlegel and Shannon (2000) highlighted that many nurse practitioners (NPs) were knowledgeable about legal guidelines for EOL decision-making but often did not incorporate advance care planning into their practice. Recommendations included enhancing nursing education to address EOL care comprehensively.
Educational Gaps
Research indicates that nursing students gain more practical knowledge and confidence from clinical experiences rather than theoretical instruction. Goodwin et al. (2002) proposed using established nursing models to facilitate advance care planning in primary care settings, although this approach requires further testing.
Family Involvement in Care Decisions
Family involvement is critical for effective EOL care. Wilson and Daley (1999) found that family members were more likely to make informed decisions when staff engaged them in advance care planning early in the process, addressing their concerns and providing relevant information about treatment options.
Hospice Care
Understanding Hospice Services
Hospice care aims to provide comfort and support to patients and families during the final stages of life. While hospice services can be provided in assisted living facilities (ALRs) and nursing homes (NHs), the quality and availability of skilled nursing care vary widely. Patients who choose to age in place may face challenges accessing the necessary care without incurring additional costs.
The Importance of Advance Directives
Although many ALRs require residents to decide on resuscitation efforts at admission, there is no standardized requirement for staff education on advance directives. Most NHs strive to offer hospice-like care and must educate both staff and residents about advance care planning, yet there are still discrepancies in practice and availability.
Challenges in Care Transition
It is not uncommon for NHs and ALRs to transfer patients who are nearing death to hospitals, often disrupting the continuity of care and causing distress for both patients and families. Efforts should be made to provide comprehensive end-of-life care within familiar settings, allowing individuals to die with dignity and comfort.
Self-Care Deficit Model
Theoretical Framework
Orem’s self-care deficit model has been applied to understand factors associated with terminal cancer patients’ choices to die at home. Grov (1999) identified that self-care deficits, caregiver availability, and resource access are crucial in maintaining patient autonomy.
The Role of Nursing
Nurses play a pivotal role in recognizing and facilitating patients’ choices regarding self-care and symptom management. Ladd et al. (2000) emphasized the importance of holistic assessments that consider patients’ relationships with family members and significant others. This model encourages nurses to engage with families to define roles in decision-making, ultimately enhancing the patient’s experience.
Legal Aspects of Life-Sustaining Care
Ethical and Legal Considerations
There is a consensus among legal scholars and ethicists that there is no ethical or legal distinction between withholding and withdrawing life-sustaining treatment (LST). Research by Reckling (1997) explored the dynamics among family members and healthcare professionals in decision-making scenarios concerning LST.
Decision-Making Roles
Reckling identified three primary decision-making roles: advocates (supporting the withdrawal of LST), neutral parties, and resistors (opposing the withdrawal). Notably, nurses often assume a neutral role in these discussions, which can create tension in decision-making processes.
Spousal Decisions
In a study by Mezey et al. (1996), spouses of patients with Alzheimer’s disease were surveyed regarding their decisions to consent to or forgo LST. The findings revealed significant variability in preferences based on the patient’s condition, highlighting the complexity of decision-making in EOL care.
Limitations to Nursing Research
Research Gaps and Design Flaws
Despite the increasing focus on EOL care, significant limitations exist in the research, including small and uncontrolled samples. These design weaknesses can lead to misleading findings that do not accurately represent the complexities of EOL care.
Recommendations for Future Research
To strengthen EOL research, it is essential to conduct studies with diverse populations and varied methodologies. Collaboration among healthcare providers, patients, and families could enhance the quality of advance care planning, as suggested by Baggs and Mick (2000).
Communication Strategies
Norton and Talerico (2000) recommend employing effective communication strategies to facilitate EOL discussions. These include clarifying treatment goals, addressing misconceptions about death, and encouraging open dialogue about preferences and fears.
Conclusion
End-of-life care is a complex and vital aspect of nursing practice that requires a multidisciplinary approach. The interplay of personal, cultural, legal, and ethical factors influences decision-making at this critical juncture in life. Continued research and education in EOL planning and decision-making are essential to improving the quality of care for patients and their families. By addressing gaps in knowledge and fostering collaboration among healthcare providers, the nursing profession can enhance the experience of dying for individuals and support their loved ones through the process.
Through ongoing efforts in nursing research, education, and advocacy, the future of end-of-life care can be more compassionate, informed, and patient-centered, ultimately leading to improved outcomes and satisfaction for all involved.