Futile Care—At What Point Have We Done Enough?
By Mary E. Garman, RN, MS, CNAA
Regardless of how many times we, as nurses, deal with death and dying, each experience stimulates us to reflect upon our own lives. Whether the death has occurred suddenly or through gradual deterioration, our minds will not allow us to move past this life experience without feeling personally challenged. During these experiences, we also become more aware of our own values and beliefs.
Following is a pediatric case study that demonstrates futile care, explains the application of the Synergy Model, describes the medical models applied to futile care decisions, examines existing medical research with respect to futile care in both adult and pediatric ICUs today and reminds nurses that they can make a difference through the “power of one.”
M.R. was a 2-year-old, blond-haired, blue-eyed boy, who previously had been healthy. He lived with his mother, father and 6-year-old brother. On the day of admission, M.R. had placed a nut in his mouth, immediately determined he disliked the taste and, without biting into it, spat it out. Within minutes, he broke out in a bright red rash and his cheeks became swollen. He complained of a funny feeling on his tongue and a sore throat. Frightened by his immediate reaction and appearance, his parents set out to drive him to a local emergency department. However, when M. R. became apneic en route, his parents stopped to call for assistance. When the rescue squad arrived, M.R.’s mother was attempting rescue breathing.
By the time M.R. arrived at the emergency department, he was in full cardiopulmonary arrest. He was intubated and given several doses of epinephrine, steroids and diphenhydramine hydrochloride. In addition, chest compressions were applied for more than 20 minutes. He survived the initial insult and was eventually taken to the pediatric ICU. The parents were told that the prognosis was poor.
Each day in the pediatric ICU resembled a roller coaster experience. On hospital day 2, though his EEG was “grossly abnormal,” M.R. spontaneously opened his eyes and appeared to be focusing. He appeared to be showing signs of resiliency. There was hope that he would compensate for the devastating blow caused by an allergic reaction to peanut oil.
Unfortunately, during the next few days, M.R. showed signs of neurological instability. By day 5, he no longer opened his eyes and made no attempt to breathe on his own. It was apparent that there were secondary injuries from the initial anoxic insult to the brain. On day 6, there was little evidence of life beyond vital signs. A care conference was scheduled and the family was told that M.R. had no chance of survival, and that brain death was probable. The family expressed the desire to continue care in the hope of organ donation once brain death occurred.
On day 11, M.R. continued to show minimal signs of life and could not be declared “brain dead.” The family lost hope of helping others through its unfortunate loss and elected to discontinue life support. M.R. was extubated, as the family prepared for him to die. On day 15, M.R. continued with an irregular breathing pattern. Life and death were obviously much more complex than many thought. By exploring their options, the parents decided that, because they loved their child so much, they wanted to make certain that he died peacefully. They requested that M.R. receive sedation, but that other medications and nourishment be discontinued. On the 16th day, the hospital’s bioethics committee reviewed the case and recommended that the family’s desires be supported.
Struggling with his own beliefs and values, the physician responsible for M.R.’s medical care turned the case over to a physician who could support the family’s decision. The rights of each nurse on the staff to decide his or her involvement in M.R.’s care were also respected. On day 32, M.R. died in his mother’s arms.
To understand the current practices surrounding futile care, the decision-making process in medical ethics must be explored. Medical decision making can be divided into two paradigms—paternalism and autonomy.
In the paternalism model, “the doctor knows best.” The physician controls the information and is the ultimate decision-maker. Only information that is beneficial to the patient is revealed.
The autonomy model allows involvement of the patient and parents. Information is shared that encourages participation in the decision-making process. The autonomy model reflects characteristics of participation, which are also seen in the Synergy Model. In the case presented here, as most typically seen in the United States today, the physician consistently demonstrated the autonomy model of decision making.
When the decision-making model for futile care is understood, it is important to know that decisions are based on goals. Goals can be viewed from two perspectives—those that will affect the patient’s physiologic status and those that will affect the patient’s life. If the benefit ascribed to a certain therapy will change only the physiologic parameter, not the patient’s overall outcome, the therapy is supplying only a physiologic benefit. In this case study, the parents believe that the therapy of feeding the child was being used only to maintain nutrition or physiologic function, and had no long-term effects on the child’s life. Futile care can be defined as care that changes a physiologic variable without offering life benefit.
Questions of futility are often accompanied by the statement that the person’s life is not worth living. Some researchers have addressed this issue not by looking at life, but by focusing their attentions instead on the worth, or more exactly the cost of life. Discussions of economic futility use as their premise the idea that resources are limited, and that the expenditure of resources on expensive high-technology therapies on patients who have little or no potential for meaningful recovery is wrong.
In 1995, Esserman et al, examined the cost of potentially ineffective care in adults.1 They defined potentially ineffective care as care to patients who had a survival of less than 100 days and whose resource consumption was in the upper quartile. They found that 13% of patients met these criteria and used 32% of the resources. They speculated that limiting ineffective care could save one hospital up to $5 million dollars per year.
Another study in 1996 examined the cost of futile care in patients in a pediatric ICU. Sachdeva et al, evaluated resource consumption and the extent of futile care among patients in a pediatric intensive care setting.2 Futile care was defined as involving patients who met one of three criteria: 1) imminent demise, 2) pre-existing lethal condition that would preclude life and 3) brain injury or other trauma that would mean a quality of life precluding anything but a vegetative existence. They found that only 6.5% of patients met criteria for futility and that resource consumption was not greater for patients defined as futile than those defined as nonfutile.
The importance of limiting futile care in adults and children is widely recognized. Whether care is terminated at the right time, or at all, continues to be debated among caregivers in critical care. Critical care nurses have the responsibility to first understand their own values regarding life. They must recognize the model that physicians apply in the decision-making process. They must understand the benefits of the therapies they are providing. They must then help patients by understanding and advocating their position regarding care. In the end, critical care nurses must also take the time to care for themselves, because it is only when we are healthy in mind and in body that we can do our best to exert the “power of one.”
1. Esserman L, Belkora J, Lenert L. Potentially ineffective care. A new outcome to assess the limits of critical care. JAMA. 1995;274:1544-1551.
2. Sachdeva R, Jefferson LS, Coss-Bu J, Brody BA. Resource consumption and the extent of futile care among patients in a pediatric intensive care unit setting. Pediatr. 1996;128:742-747.
Mary E. Garman is a member of the AACN Ethics Integration Work Group. She is director of critical care at Children’s Medical Center, Dayton, Ohio.
Nurses Truly Do Make the Difference
Frankie T. Gilbert, RN, ADN, CNRN, is a staff nurse in the coronary care unit at Spartanburg Regional Medical Center, Spartanburg, S.C. She received a 1999 Excellence in Clinical Practice Award, cosponsored by 3M Healthcare. Following are excerpts from the exemplar that Gilbert submitted in connection with her award, which is part of AACN’s Circle of Excellence recognition program. For more information about Circle of Excellence awards, call (800) 899-AACN (2226), or visit the AACN Web site at
By Frankie T. Gilbert
For most of my more than 15 years as a bedside coronary nurse, I have been a preceptor. I am proud of my profession and my CCRN credential, which I obtained seven years ago, because nurses do make the difference. I believe I have proven that.
My top priority has always been to put my patients first and to be their advocate. I was truly put to the test when all these needs became wrapped up in one situation, and all my critical care and decision making skills played a major role in a patient’s life.
My patient, Mr. Rodgers, had been admitted earlier in the day with congestive heart failure. As my day-shift colleague gave me report, she was extremely frustrated, because Mr. Rodgers’ condition seemed to be worsening and his physician seemed slow in responding with interventions. I assembled my chart and proceeded directly to Mr. Rodgers’ room to assess his condition and begin his care. I immediately noticed that his respirations were labored and that he was using his accessory muscles to breathe.
Mr. Rodgers’ respiratory rate was 16 breaths/minute and shallow. He had been placed on oxygen therapy, and his O2 saturation remained at 86%. As I auscultated his lung fields, I heard scattered rales and wheezing. His ankles were swollen and his neck veins were engorged. He was tachycardic and hypertensive. It was evident that something more had to be done.
I changed his oxygen delivery to a 100% nonrebreather mask and waited to see if there would be a change. In addition, I called his physician to tell him that his patient’s condition was getting worse. The doctor requested that we try not to intubate him until he arrived and made his assessment.
After about 15 minutes, the pulse oximeter reading was only 90%. Because of his severe congestion, there was not sufficient air moving across Mr. Rodgers’ lung fields. I told Mr. Rodgers that we probably could not give him enough oxygen with the mask and that the next step would be to insert a tube down his throat into his lungs and place him on a breathing machine. With half-open eyes and a face that was drained of all energy, he nodded slightly to indicate that he understood. Because his body was almost motionless, I knew I had to move quickly.
I reviewed his lab results and a recent echocardiogram, and then called the respiratory therapist to draw stat arterial blood gases (ABG). As I had feared, Mr. Rodgers’ tests revealed that he had prevalent renal failure and a cardiac ejection fraction of 15%. Compounding matters was the fact that the first set of cardiac enzymes were positive for a myocardial infarction. The ABG results now showed a respiratory acidosis, coupled with some metabolic alkalosis.
I again contacted the physician to report that Mr. Rodgers’ condition was continuing to decline. I suggested medication that would reduce preload and afterload should be started. I suggested dobutamine hydrochloride to improve his cardiac output, dopamine to improve renal perfusion and, perhaps, a little IV nitroglycerine to decrease his blood pressure and increase coronary perfusion. Saying that he would be there shortly, the physician told me to proceed.
With a game plan in place, I gathered my teammates and called Mr. Rodgers’ family to inform them that he had taken a turn for the worse. I explained to Mr. Rodgers that we would be starting the IVs and giving him something to help him rest, which would help with the blood flow to his lungs. He nodded in agreement. The physician arrived and, after telling Mr. Rodgers of his condition, asked whether he wanted to be placed on a ventilator. In a low, whispering voice, Mr. Rodgers answered, “Yes, if it’s the only way I can breathe and get some relief.”
As the respiratory therapist prepared for intubation, I administered some intravenous sedation and held Mr. Rodgers’ hand. After he was connected to the ventilator and the medications began taking effect, he was quiet. His blood pressure decreased and, after administration of some IV diuretics, his vital signs stabilized and he produced some urine.
With a sigh of relief, I went to inform Mr. Rodgers’ family of what we had done. I also told them that, because of his history and most recent heart attack, his prognosis was poor. They thanked me for the care and concern I had shown them and Mr. Rodgers.
That was the last time I provided care for Mr. Rodgers. Over the next few days, his renal condition worsened. He was placed on hemodialysis at his family’s request, and later had a cardiac arrest. Although I was not on duty the day Mr. Rodgers died, I sent a sympathy card and a note to his family.
Although life was not the outcome for Mr. Rodgers, I felt good that I had done all that I could to temporarily relieve his suffering and that his wishes to have everything possible done for him were carried out.
The physician told me that he was glad I had taken the initiative to guide him in treating Mr. Rodgers. “I have always trusted your judgment, and I will always stand by you with any decisions you make to care for your patients,” he told me.
Practice Resource Network: Frequently Asked Questions
Staffing Blueprint Emphasizes Patient-Focused Care
QOur patient census has been at record highs and our staff severely depleted. I am routinely required to care for three or more critically ill patients at a time. Are there standards for minimum patient care activities during these times?
AIn 1995, the American Nurses Association adopted a position statement titled “The Right to Refuse or Reject an Assignment.” It states that, if a nurse believes an assignment or situation is unsafe, he or she should contact the immediate supervisor prior to accepting the assignment to report the unsafe situation and ask for assistance in care planning based on available resources.
Although delivering the type of nursing care that would be delivered with a full complement of staff may be impossible, certain activities must be carried out, regardless of staffing. Following are examples of these types of activities:
The most important factor when confronted with difficult situations is how we respond to them. The majority of critical care nurses have exceptionally high standards for the care they provide to their patients. However, in trying times such as these, we may need to relax our picture of what “good care” looks like.
AACN strongly believes that patient needs should drive care delivery. The AACN Staffing Blueprint: Constructing Your Staffing Solutions is a comprehensive resource that emphasizes patient-focused care. This resource serves as a map to assist you in planning your individual staffing solutions. The spiral-bound blueprint can be ordered through the AACN online Bookstore at
http://www.aacn.org, or by calling (800) 899-AACN (2226). Request Item #300117. The price is $26 for AACN members ($35 for nonmembers).
For more than a year, AACN has provided age-related practice information in this “Geriatric Corner” feature. Now, we would like to hear your stories and ideas related to this topic. We want to provide a vehicle for the sharing of information that can enhance practice for all members who provide care to the older population.
We also want to hear your suggestions regarding content to be presented in the “Geriatric Corner,” and whether the practical information presented has been useful to you or if you have made changes to your practice because of this information.
Send your age-related care stories and ideas to AACN Clinical Practice Specialist, Justine Medina, RN, MS, 101 Columbia, Aliso Viejo, CA 92656; fax, (949) 448-5520; e-mail,
Submit Research, Creative Solutions Abstracts for NTI 2001 in Anaheim
Sept. 1, 2000, is the deadline to submit abstracts on research studies, research utilization and creative solutions for AACN’s 2001 National Teaching Institute™ and Critical Care Exposition, which is scheduled for May 19 through 24 in Anaheim, Calif.
Presenters will receive a $75 reduction in NTI registration fees. All other expenses are the responsibility of the presenter, who can be either the first author or a designate of the author.
Following is information about these abstracts:
Abstracts can focus on any aspect of critical care nursing research including reports of research studies or reports of research utilization. Only abstracts of completed projects will be accepted.
Abstracts reporting research studies must address the purpose; background and significance; methods; results; and conclusions.
Abstracts should focus on specific strategies and practice innovations that are used by nurses to solve difficult, unique or interesting problems in patient care, nursing practice, nursing management, or nursing education. The creative solution must have been implemented, with outcomes evaluated.
Abstracts must address the purpose of the project and description of the creative solution, as well as evaluation and outcomes.
Accepted abstracts will be designated either as an oral presentation or as a poster presentation.
To obtain abstract forms, call (800) 899-AACN (2226), or visit the research section of the AACN Web site at
Apply for Nursing Research Grants
The deadlines to apply for several nursing research grants are approaching. Following is information about these grants:
American Nurses Foundation-AACN Research Grant
This $5,000 award is given annually to support critical care nursing research. Sponsored by the American Nurses Foundation (ANF), this grant must be relevant to critical care nursing practice.
The program is designed for either a beginning nurse researcher or an experienced nurse researcher who is entering a new field of study.
The principal investigator must be an RN who has obtained at least a baccalaureate degree in nursing. The proposed study may be used to meet the requirements of an academic degree.
Application materials and instructions are available from ANF, (202) 651-7298, or by clicking on the ANF link from the AACN Web site at www.aacn.org. Applications must be received at ANF by May 1, 2000.
AACN Clinical Inquiry Grants
These grants, funded by an anonymous donor, support projects that address one or more AACN research priority and that link to AACN’s vision. Selected projects will receive up to $250 each.
The principal investigator in the proposed study must be an RN, a current member of AACN, employed in a clinical setting and directly involved in patient care.
To obtain application materials and instructions, call (800) 899-AACN (2226), or visit the research section of the AACN Web site at
Applications must be received by July 1, 2000.
Do You Have a Question?
AACN has a wealth of resources available to help members with their clinical practice questions. The Practice Resource Network can be accessed at (800) 394-5995, ext. 217, or by e-mail at
firstname.lastname@example.org, or through an online InfoLink discussion forum through the AACN Web site at
http://www.aacn.org. You can also publish a practice question in the InfoLink column in AACN News. Send these questions to AACN News, 101 Columbia, Aliso Viejo, CA 92656; fax, (949) 362-2049; e-mail,
email@example.com, or call (800) 394-5995, ext. 502. Please include as much of the following information as possible: your name, mailing address, phone number, fax number, and e-mail address. InfoLink questions in AACN News are published based on available space.