Decisions Near the End of Life
November 1999 (revised)
November 2004 (revised)
November 2009 (revised)
Statement of the Issue
End-of-life decision making and care are important aspects of the delivery of healthcare. Medical technology has shaped the circumstances of death, giving us options that may impact when, where and how we die. Intervening at the moment of death, technology can now sustain lives even when there is little or no hope for recovery or a meaningful existence. However, such actions may be inconsistent with patient desires and foster unwarranted variations in end-of-life practice patterns.
In response, patients and/or their proxies are exercising more influence over decisions regarding interventions that may prolong existence rather than allowing the natural progression of the dying process near the end of life. The traditional value to preserve life by all possible means is now being weighed against patient-centered, quality-of-life considerations based on evidence-based care and a shared decision-making process.
The American College of Healthcare Executives (ACHE) urges healthcare executives to address the ethical dilemmas and care issues surrounding death and dying. Additionally, executives should promote public dialogue that will lead to awareness and understanding of end-of-life concerns.
ACHE encourages all healthcare executives to play a significant role in addressing this issue by:
Ensuring Ethical End-of-Life Decision Making
- Healthcare executives and their organizations should promote the patient’s (or, when lacking decision-making capacity, the authorized surrogate’s) self-determination regarding end-of-life decision making. Generally, informed adult patients or their surrogate have the ethical and legal right to accept or refuse any recommended treatments based on the ethical principle of autonomy. Such decision making should include an open, truthful discussion regarding the patient’s situation and evidence-driven healthcare options.
- The healthcare executive should ensure that patient or surrogate decisions are appropriately documented and respected.
- When there is disagreement regarding treatments for patients lacking decision-making capacity (even those patients who have valid advance directives or durable power of attorney documents), the guidance of an ethics committee or similar resource may aid in resolution. Healthcare executives should ensure that there are clear guidelines, including a process to address care management disputes as well as provide support to healthcare professionals and families responsible for making treatment choices.
Fostering the Use of Advance Planning Documents
- Healthcare executives should advocate for the introduction, discussion and completion of organ and tissue donation designation and advance directives documents, including a recognized living will and durable power of attorney for healthcare. Ideally, such documents should be prepared prior to hospitalization or a medical crisis (see related Policy Statement, “Organ/Tissue/Blood/Blood Stem Cells Donation Process”).
- When the patient lacks decision-making capacity, treatment decisions should conform to what the patient would want based on his or her written or oral advance directive. In the absence of clear advance directives, the designated surrogate should be the decision maker and act in accordance with his or her understanding of the patient’s desires.
Developing and Implementing End-of-Life Organizational Guidelines
- Healthcare executives should ensure that appropriate end-of-life care and decision-making policies and procedures are developed and implemented, including do-not-resuscitate orders, withholding and withdrawing life-sustaining treatment, medical futility and organ donation. Such guidelines should be regularly reviewed.
- When developing and implementing guidelines, healthcare executives should encourage cooperation and understanding among the clinical staff, members of the governing body and executive management. Executives should ensure that appropriate methods for raising awareness and staff education are provided regarding end-of-life ethical dilemmas, including how to access organizational ethics resources.
- If organizational policies limit specific end-of-life options for patients and families or surrogates, healthcare executives have a responsibility to see that procedures are in place that provide disclosure of such limitations.
Ensuring Available End-of-Life Care Support for Patients, Families and Staff Members
- In the care of patients at the end of life, executives should support the development and availability of effective resources such as palliative care and hospice programs for patients and families to preserve psychological, social and spiritual well-being.
- Executives should support the development of resources and programs that promote pain control as a crucial modality in the management of patients at the end of life.
- Executives should ensure that staff have the knowledge and resources to address end-of-life decision making and patient care.
- Executives should ensure that effective support programs, such as ethics committees and employee assistance, are available to staff members to address ethical conflicts and moral distress that frequently surround end-of-life decision making and patient care.
Promoting Community End-of-Life Discussion
- Executives should heighten awareness of ethical issues, including the patient or surrogate’s right to choose treatment, through information forums that promote open discussion among patients and their families, attorneys, clergy members, journalists, physicians, and other healthcare professionals. By raising and openly discussing ethics issues, healthcare executives will aid the public in understanding the importance of thinking about end-of-life issues and the organization’s interest in ensuring patient-centered care.
Healthcare executives should foster reasoned, compassionate patient-centered decision making that considers the rights and values of patients and staff members. While interpretation of these principles will vary by local custom and law, healthcare executives have a responsibility to ensure their organization operates with respect for the inherent worth and human dignity of every individual.
Approved by the Board of Governors of the American College of Healthcare Executives on November 16, 2009.
American College of Healthcare Executives Policy Statement, “Organ/Tissue/Blood/Blood Stem Cells Donation Process.”