More than half of patient deaths in the populations served in nursing facilities result from progressive, chronic illnesses and are, therefore, predictable in their timing. By recognizing the advanced stages of terminal disease, health care professionals (physicians, nurses, physician assistants, and nurse practitioners) can greatly impact the circumstances surrounding their patients’ deaths. 

But meeting a patient’s needs and expectations for an “optimal” end-of-life experience generally requires planning.

The Burden Of Not Planning

In the absence of conscientious physician and nurse involvement, the natural history of terminal disease includes a progressive or sudden decline, such as a sentinel event, followed by crisis intervention, such as emergency hospitalization, cardiopulmonary resuscitation, or the initiation of life support. 

These events are unfortunate and often counterproductive for patients and their families. Most interventions are stressful, resource consuming, and, most of all, ineffective at meeting patients’ goals. 
The burden on the patient can be even greater when the cycle becomes repetitive. The majority of a patient’s remaining lifespan could actually be spent away from family. What’s more, end-of-life wishes and preferences may be ignored if caregivers are not cognizant of them. 

Compassionate Care 

Most individuals prefer death to arrive expectantly, quietly, and without pain. But too often, patients and their families are “surprised” when death is near, causing anxiety and often anger toward the physician and the facility’s staff.

As the end of life approaches, significant psychosocial and, often, spiritual needs of patients and their families are manifested. 
Patients may require comfort care, including the management of pain and other physical symptoms, such as shortness of breath.
Families may also be faced with significant financial (and bureaucratic) burdens.
The responsibility for ensuring that patients and families receive required treatments and support services in a compassionate manner should be shared broadly among the entire health care team, including the physician(s), nurses, nurse assistants, therapists, social services, and even the facility administrator.
Lead members of the care team should set expectations and carefully document the wishes of the patient and family, as follows:
  • ​The patient’s code status;
  • The use of chest compressions, intubations, and mechanical ventilation;
  • The use of feeding tubes;
  • Hospital transfers;
  • Pain management;
  • Antibiotics; and
  • Blood transfusions.
Studies and surveys have repeatedly shown that most individuals do not want an inevitable death prolonged through artificial means. Survival from cardiopulmonary arrest in this population is very poor (< 5 percent) and, for the few survivors, associated with a high degree of morbidity, including persistent vegetative state (14 percent), chronic heart failure (49 percent), seizures (40 percent), and rib fractures (18 percent), research shows.

Of the cardiopulmonary resuscitation survivors, 87 percent die soon after in the hospital. Intubation and mechanical ventilation create tremendous anxiety when the difficult decision of extubation is finally made. 

Feeding tubes are considered by most individuals as artificial and undesirable, and their use does not decrease the risk of aspiration. With the patient’s permission, obtaining a hospice consultation may be helpful in addressing a person’s needs and wishes.

Convey Expectations

Truly compassionate care requires health care professionals to help patients and their families understand the risks and benefits of available interventions near the end of life, which are typically unlikely to significantly prolong life or a meaningful existence and may cause pain and suffering during the final moments.

When death arrives unexpectedly, without the opportunity for the patient and family to organize their thoughts and their estates, anxiety and, often, anger ensue. Sometimes this anger is misdirected toward the physician and the facility in the form of legal action. 

Certainly, some claims are based purely on greed, and only a few have real merit. The burden, capable of consuming great amounts of time and money, falls on the physician and the facility to prove that they served the patient in a manner consistent with the standards of care. A caregiver’s personal testimony is helpful; however, the only solid evidence is the medical record.

Many health care professionals document only the episodic care that they provide on a given visit and fail to discuss the patient’s overall condition. Due to their personal beliefs, lack of comfort, or inexperience, some clinicians do not recognize (or choose to ignore) that the end of life is near. This is especially true when the patient does not have a preexisting, documented terminal disease, such as Stage IV lung cancer. 

Take, for example, an actual recent lawsuit from the daughter of a 92-year-old nursing facility resident, which states that her mother died “unexpectedly and prematurely.” 

Despite a one-and-a-half-year downward clinical course, including end-stage Alzheimer’s, seven episodes of urosepsis, two episodes of aspiration pneumonia, two pressure ulcers, and functional decline due to a nonambulatory status, the patient’s daughter believes she was given some hope for meaningful recovery of her mother through multiple hospitalizations and intravenous antibiotics. Upon review, no documentation of the patient’s limited life expectancy was found in the nursing facility or hosptial record. The case was subsequently settled in favor of the complainant through arbitration.

Clearly, it is imperative that health care professionals document the determination that the end of life is near and all conversations with the patient and family in that regard. Examples of such documentation could include: “The inevitable effects of aging are in place;” “the patient’s life expectancy is limited;” “multiple organ system failures are occurring;” and “the patient’s quality of life will continue to deteriorate.”
Statements such as these should appear frequently in a long medical record;  preferably, shortly after admission and then at least monthly as applicable.

Timing And Hope

A word on timing: The care plan meeting (at which the family is present) may be the most appropriate time to compassionately discuss and document the patient’s long-term prognosis, set expectations, determine end-of-life wishes, and offer clinical options to enhance comfort.

When discussing a poor prognosis and setting expectations with patients and families, health care professionals should focus on shifting a family’s hope from recovery to a comfortable, pain-free end-of-life experience.

All individuals desire an “optimal” end-of-life experience. Through the provision of compassionate care, setting of expectations, and planning, physicians and other health care professionals working in concert can make this a reality for many patients.
In addition, careful and consistent clinical documentation of these issues may also help provide protection against frivolous lawsuits. 

Maximo Diamond, MD, is a health care consultant for Diamond Medical Associates, Laguna Beach, Calif. He can be reached at (949) 315-1169 or at ​