DECISIONS NEAR THE END OF LIFE

August 1994
November 1999 (revised)
November 2004 (revised)
November 2009 (revised)
November 2014 (revised)

Statement of the Issue

End-of-life decision making and care are important aspects of the delivery of patient-centered healthcare. Medical interventions have shaped the dying process, giving us options that can impact when, where and how we die. Intervening at the moment of death and during the dying process with medical care can sustain lives, even when there is little or no hope for recovery or a meaningful existence. However, such actions may be inconsistent with patient preferences and foster unwarranted variations in end-of-life practice patterns.

In response, patients and/or their proxies should exercise control over decisions regarding use of medical interventions that may prolong existence rather than allow the natural progression of the dying process. 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.

Policy Position

The American College of Healthcare Executives (ACHE) expects healthcare executives to be committed to the compassionate and competent care of dying patients, including addressing the ethical dilemmas 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 ensure 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 patient or surrogate decisions are appropriately documented and respected.
  • When there is disagreement regarding treatments for patients and/or surrogates for patients lacking decision-making capacity (even those patients who have valid advance directives or durable power of attorney documents), healthcare providers should respond with empathy and thoughtful exploration of all possibilities. Guidance of an ethics committee or similar resource may aid in resolution. Healthcare executives should ensure there are clear guidelines, including a process to address care-management disagreements 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 advance directives documents, including a recognized living will and durable power of attorney for healthcare and organ and tissue donation designation. 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 preferences.

Developing and Implementing End-of-Life Organizational Guidelines

  • Healthcare executives should ensure 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. Appropriate staff education should be provided to foster the consistent application of the approved policies.
  • 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 appropriate methods for raising awareness and staff education are provided regarding end-of-life ethical dilemmas, including how to access organizational ethics resources.
  • Healthcare executives should thoughtfully review their facility’s policies regarding the application of the law, keeping in mind state by state differences exist concerning physician-assisted suicide or aid in dying. Organizational policies should reflect the organization’s values in relation to the law. Healthcare executives and providers, along with the ethics committee and legal counsel, should be active participants in the development of local practices.
  • 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 to provide full 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 staff have the knowledge and resources to address end-of-life decision making and patient care.
  • Executives should ensure 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 facility and community 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 staff and 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, preferences 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, rights and human dignity of every individual.

ACHE expects healthcare executives will promote ethical end-of-life decision making with the use of advance planning documents and end-of-life organizational guidelines. Executives should ensure end-of-life care support resources are available for patients, families and staff members. Lastly, healthcare executives should serve as a community resource in end-of-life discussions.

Approved by the Board of Governors of the American College of Healthcare Executives on November 10, 2014.

Related Resource

American College of Healthcare Executives Policy Statement, “Organ/Tissue/Blood/Blood Stem Cells Donation Process.”

“Palliative Medicine and Patient Satisfaction,” Healthcare Executive, January/February 2015