The Post-Acute and Long-Term Care Medical Association (PALTmed) has demonstrated a longstanding concern to improve the quality of End of Life care in our nation's skilled nursing facilities and throughout long-term care. Whether the resident is a chronically ill child, a patient with advanced AIDS, or a frail elder, the populations we care for are seriously, and often terminally, ill. Changes in demographics, in hospital reimbursement methodologies, and in patient preferences, have shifted the location of death away from acute care hospitals toward nursing homes, hospices or hospice home care, continuing care retirement communities, or assisted living facilities. Current estimates are that one quarter of all deaths in the United States occur in nursing homes. Certainly, death is no stranger in the long-term care setting.
While considerable appropriate attention has been given to issues such as advanced directives, pain management and palliative care, feeding and hydration at the end of life, and hospice-nursing home partnerships, little attention has been paid to the appropriate management of the death itself. The promise that their body will be treated with respect, their family and loved ones promptly notified, etc. may be a source of comfort to the dying and is certainly a comfort to the bereaved. Good care requires that deaths be promptly and accurately declared when they occur, so that the family and friends are notified and to prevent inappropriate use of degrading resuscitative measures on the already deceased. Many religions have specific rituals that should be initiated immediately after a death has occurred and some have specific time requirements within which certain rituals must be performed. Appropriate support for organ transplantation as well as arrangements for harvesting of organs may also require prompt determination of death. Unfortunately, confusion often exists among professionals in long-term care between the declaration of a state of death and the certification of its cause. Vague and contradictory State codes, misunderstandings concerning Federal requirements coupled with the occasionally overzealous efforts of governmental surveyors, and traditions held over from different times and circumstances, have all fueled this confusion.
The Uniform Declaration of Death Act (1980) declares that death has occurred when an in individual has sustained either 1) irreversible cessation of circulatory and respiratory function or 2) irreversible cessation of all function of the entire brain including the brain stem. It also states that a determination of death must be made in accordance with accepted medical standards, but does not specify what those standards should be.
Legal requirements surrounding the dying process vary from state to state, but generally include two parts. The first, the declaration of death, is a clinical determination that the death has occurred. Depending on the location, this determination can be made by emergency medical personnel, by graduate but unlicensed doctors in a hospital setting, by a registered nurse, by a registered nurse only for hospice patients, only by a physician, by a physician extender (PA or NP), or there may be no specification at all. After the death is declared, the resident is legally dead, the family or responsible party is notified, the body may be moved for storage and appropriate religious rituals initiated, and the grieving process begins. The second part is the certification of death. This includes identification of the time and cause or causes of death. Only after the death certificate is filed, and the potential need for involvement by the medical examiner or coroner determined, can burial proceed.
Uncertainty as to the existence of a state of death has significant consequences. Although the success rate for attempts at cardiopulmonary resuscitation in skilled nursing facilities is extremely low, perhaps vanishingly low, some residents or families do wish that this be attempted where possible. Centers for Medicare and Medicaid Services (CMS) has reminded all skilled nursing facilities that participate in Medicare that a choice regarding CPR must be made available to every resident. In some states, the legislatures have affirmatively declared that anyone who has not specifically refused CPR should be considered to desire it. Thus any nursing home resident who is without a pulse or not breathing, does not have a Do Not Resuscitate order, but is not dead should receive artificial respiration and chest compression in an attempt to restore circulation. Nursing homes have received deficiency citations for failure to initiate resuscitation under such circumstances. Frail nonagenarians with advanced dementia have sustained rib and sternal fractures during unsuccessful attempts to resuscitate them. By contrast, if the resident were declared dead, any attempt to initiate chest compressions would be an insult to the body and a gross act of disrespect.
The policy of the American Medical Directors Association is:
- We reaffirm the importance of physician involvement in providing end of life care, including physician-patient and physician-family communication and support after the death of a loved one. We emphasize the importance of identifying patients' advance directives and treatment preferences and the moral obligation of physicians, nurses, and other health care providers to honor those directives.
- We recommend that nurses as permitted by the state board's nursing scope of practice regulation be permitted to pronounce the death of a nursing facility resident or of a hospice, hospice home care patient, resident of a continuing care retirement community or assisted living facility. We support our nursing colleagues in their appropriate desire to fulfill their professional role and in their desire to avoid undue and unnecessary delay in the initiation of appropriate post mortem care. (See, for example, Manitoba Association of Registered Nurses "Can a nurse pronounce death?" and The New York State Nurses Association "Position Statement on the Role of the Professional Nurse in the Pronouncement of Death" Revised 9/17/87).
- We recommend that the individual (nurse or physician) who pronounces a resident's death undertake and document a systematic evaluation of the patient as a prerequisite for determination of death. This evaluation should include the measurement of vital signs and identification of other significant clinical factors such as pupillary dilitation, dependent pooling of blood, cooling of the body, muscular rigidity, etc.
- We reaffirm the importance of prompt notification of the Attending Physician after the determination of death has been made, whether by a registered nurse or another physician, and of the important role of the physician throughout the dying process.
- Due to the multiple and complex medical conditions typically present in patients dying outside the hospital setting, we believe that only a licensed physician should certify cause of death.
Note: Effective August 13, 2024, AMDA - The Society for Post-Acute and Long-Term Care Medicine is now Post-Acute and Long-Term Care Medical Association (PALTmed).