note: This post is also in .pdf format here.
“Just do everything”?
A Goals of Care Protocol for End-of-Life Decision Making
Jonathan Green, MD; Laureen Hill, MD; Douglas Brown, PhD
[Jonathan, Laureen, and I were with Washington University in St. Louis School of Medicine when we created and implemented this ‘Goals of Care’ protocol at the medical school’s teaching hospital. I was embedded in the hospital working collaboratively with the ethics committee members to strengthen the ability of the hospital staff to handle ethically challenging cases. Jonathan was the ethics committee’s chair. Laureen anchored the ethics consult service. Jonathan – a pulmonologist -- was one of the Medicine ICU attendings and is now with the NIH. Laureen – an anesthesiologist -- was one of the Cardio-Thoracic ICU attendings and is now the Chief Operating Officer with New York Presbyterian-Columbia.]
A paradigm case
An 84-year-old female is brought to the emergency room in cardiac arrest. After twenty minutes of CPR, she is resuscitated and transported to the Medicine ICU. She is intubated, on mechanical ventilation, requires hemodynamic support with vasopressors, and is in acute renal failure. She is diagnosed with pneumonia and sepsis. After one week of aggressive treatment, she has not improved and has deteriorated into multi-organ system failure. She responds only to painful stimuli despite minimal sedation. She remains oliguric and on high doses of norepinephrine to maintain an adequate blood pressure. The medical team considers her prognosis to be grim. If she survives, she will likely be confined to bed, will be fully dependent on others for her care for the remainder of her life, and may be severely cognitively impaired.
A recurring ethical problem/challenge
Caring for such a patient can be simultaneously the most challenging, the most rewarding, and the most frustrating experience for physicians and support staff as well as for the patient and family members. When successful, an opportunity for reflection and closure is created for the patient and family and also for the health care team. Yet too often the experience deteriorates into turmoil and conflict.
Studies have repeatedly documented dissatisfaction with end-of-life care as provided in acute care hospital settings. Flawed communication remains the norm. To illustrate with the 84-year-old female patient, a typical discussion between the attending physician and family members of the patient might proceed as follows. After morning rounds, the physician meets with the patient’s husband in the ICU consultation room to discuss his wife’s care. The physician begins:
“Mr. Smith, your wife is very ill. She suffered extensive brain damage when her heart stopped a week ago. Her kidneys have failed. Her blood pressure is very low and is requiring strong medicine to keep it in a safe range. She is unable to breathe without the breathing machine. Right now intensive life-support is keeping her alive.” The physician then asks the patient’s husband, “If her heart stops, what would you like us to do?” Mr. Smith responds, “I don’t understand, doctor. What do you mean?” The physician continues, “Well, if her heart stops, do you want us to try and restart it?” Tearfully, Mr. Smith answers, “Of course, Doctor. Won’t she die if you don’t? I love her. We have been married fifty-four years. . . .” The physician continues, “Well, what about dialysis, should we start dialysis if her kidneys do not improve? And do you want us to continue with the blood pressure medicine if her blood pressure drops further?” Now very distraught, Mr. Smith responds, “Doctor, I want you to do everything”.
The physician returns to the ICU, feeling frustrated that the care team is continuing interventions they know are non-beneficial. The husband is confused and upset. He feels less in control, less able to help his wife. He does not understand what the doctor was asking him or why.
Assessing the problem
We formed a multi-specialty working group of physicians, nurses, and other hospital staff – all of whom were intimately involved in the care of critically-ill patients – to assess the need for improved communication with patients and their families. A consistent theme that arose in numerous interviews and focus groups with staff was the use of the hospital’s ‘Level of Care Treatment Orders’ form, a pre-printed order sheet that had been designed for the medical staff to use in documenting and communicating to the nursing staff the medical interventions that were or were not to be performed in the care of a patient. With a checklist of fifteen different interventions ranging from CPR, defibrillation, and endotracheal intubation to antibiotics, x-rays, and blood draws, this form focused on therapeutic options in a convenient menu format. We discovered that, instead of being used as an orders sheet for the nurses, this form was frequently being presented to patients or their family members by a member of the medical staff. A point by point discussion followed, in which the family was asked to choose which therapies they wished their loved one to receive. The consequences from this deeply flawed process were several and serious – e.g.,
- family members were essentially being asked to develop the patient’s treatment plan;
- physicians were failing to develop logical therapeutic strategies, handing off critical decisions instead to family members;
- the treatment plans that were being implemented often did not make medical sense (e.g., CPR but no intubation) and were not linked to feasible outcomes;
- the perception that anything less than everything possible is a diminished ‘level’ of care was being reinforced;
- attention to the patient’s goals and expectations for a hospitalization was inadequate or nonexistent;
- patients and their families (who were being asked to make decisions far beyond their knowledge or understanding) were frequently confused;
- caregivers routinely became demoralized and defensive (as indicated by references to a patient’s care as ‘flogging’, ‘abuse’, ‘wasteful’, ‘futile’, ‘torture’, ‘insane’, ‘brutalizing’).
The need to remove/eliminate the ‘Level of Care Treatment Orders’ form/approach and in its place to develop an alternative approach that would clarify feasible patient goals, establish a focus of care, delineate decision-making responsibilities, and provide a rational framework for code status orders for cases involving decisions about the use of life-sustaining intensive interventions was apparent and urgent.
Developing an alternative
After numerous cycles of feedback and revision over eighteen months, an alternative approach – based on a ‘Goals of Care Directive’ template we created (inserted below) -- was submitted to the appropriate medical and administrative committees for approval/adoption. This approach and the accompanying template was then introduced in the hospital’s ICUs and eventually integrated into the EMR.
The first and anchoring step calls for the treating physician to learn from the patient and/or family members the goals and expectations for care. The patient and/or family members may propose specific affirmative goals and expectations for care (which should be documented verbatim when possible). In addition and of similar importance, many patients and/or family members are able to identify conditions that would be unacceptable outcomes of the hospitalization.
After identifying and clarifying the goals and expectations for care with the patient and/or family members, the treating physician guides the discussion to the second step – i.e., to reach consensus on the appropriate focus of the treatment plan (i.e., comfort care or restorative care). It is the responsibility of the treating physician to develop and implement a medically sound plan that is consistent with the values, goals, and expectations of the patient. It is the responsibility of the patient and/or family members to provide accurate information to the treating team as to the patient’s values, goals, and expectations and to remain sufficiently present/informed about the patient’s care to weigh the burdens to the patient associated with the treatment plan. In this way, a productive ongoing discussion can ensue, without unreasonable responsibilities being placed on the family and with appropriate medical decision-making being assumed by the treating physician. All medically appropriate therapies that are consistent with the patient’s values, goals, and expectations should be implemented. Those treatments that are not efficacious, not consistent with the patient’s values, goals and expectations, or highly likely to leave the patient with an outcome deemed unacceptable by the patient and/or family members should not be introduced or initiated.
The treating physician readdresses the goals and expectations for care with the patient and/or family members and alters the treatment plan (1) when there is a significant change in the patient’s condition or prognosis, or (2) if after a trial of therapy it is clear the previously established goals and expectations for care cannot be reached. At this point, the treating physician speaks further with the patient and/or family members about achievable goals and modifies the focus of care and treatment plan accordingly (e.g., a patient with severe pneumonia/ARDS and initial goals to return home to independent living who cannot be weaned from mechanical ventilation following a protracted ICU course and multidrug resistant infections).
This ‘Goals of Care Directive’ approach provides a framework for code status decisions. A physician order is placed in the orders section of the patient’s medical record when the treating physician determines that initiating ACLS protocols is not consistent with the patient’s values, goals and expectations. This order is deliberately and intricately linked to the discussion of the goals of care and the focus of care with the patient and/or family members. The specific elements of ACLS need not be individually discussed with the patient and/or family members. If attempts at resuscitation are appropriate in the event of cardiac arrest, all medically indicated interventions should be done. The circumstances to which a ‘No Code’ order applies are very narrow. The intention is that a ‘No Code’ order should be applied only to situations of complete cardiac and/or respiratory arrest – i.e., no pulse, no blood pressure, and/or no respirations. All other situations -- such as hypotension, supraventricular tachycardias, respiratory distress -- should be individually addressed and treated in a manner consistent with the patient’s goals and values. The management may or may not include aggressive measures, depending on the specifics of each case.
Conclusion
What would using this ‘Goals of Care Directive’ approach and template contribute to the communication with the 84-year-old female patient’s husband? The attending physician finds a quiet place near the ICU to speak with the patient’s husband and begins --
“Mr. Smith, I would like to speak with you about your wife. First, do you have any specific questions?” Mr. Smith answers, “How is she doing, Doctor?” The physician responds, “Unfortunately, not well. When she was brought to the hospital, her heart had stopped. In the emergency room, the doctors were able to restart her heart, but she has suffered brain damage and some of her other organs, such as her kidneys, have also been badly damaged. Right now intensive life support is keeping her alive.” The physician pauses for Mr. Smith, now tearful, to gather himself. Mr. Smith reflects, “That sounds terrible. We have been married 54 years. I can’t imagine life without her.” The physician admits, “I can hardly imagine how difficult it must be for you to see your wife like this. I need to know more about her, I need to understand her better, so that we can make a plan that is best for her. Can you tell me about her? Did she work?” Mr. Smith clarifies, “No, she stayed home and cared for our children. She was always very active though. She loved to garden and help out with church activities. She always was watching one grandkid or another. . . .” The physician comments, “It sounds like she was a very busy person, and that you have a very close family.” Mr. Smith agrees, “Yes, she always has to be busy. Our family means the world to her.” The physician explains, “Unfortunately, because of what has happened to her, I don’t think she will be able to recover sufficiently to return to those activities.” Mr. Smith asks, “What do you mean?” The physician continues, “If she survives this hospitalization, she will almost certainly have to go to a nursing home. She will not be able to care for herself or interact much with her family.” Mr. Smith reacts, “Oh no, we have talked about that. She would never want to live that way. Her mother was in a nursing home for years and it was very hard on my wife. She has frequently told me and our children not to keep her hooked to machines.” The physician pauses, then begins to discuss a plan consistent with this understanding, “Given what you have just explained, continuing what we are doing right now doesn’t make a lot of sense. We should instead focus on keeping her comfortable. She is likely to deteriorate further. If she does, we will let her pass peacefully. We will not attempt to restart her heart. Do you have any questions?” The husband replies, “Thank you Doctor, please make sure she doesn’t suffer.” The physician responds, “We will. Do you want me to be with you when you speak with your children?” The husband accepts the offer.
This idealized conversation is not outside the bounds of reality or experience. Approximating this conversation requires a skilled and individualized approach with every patient and family. Some cases will be more difficult than others. Some cases will still end in frustration, despite everyone’s best efforts. However, by utilizing this ‘Goals of Care Directive’ approach and template, we propose that such collaborative and respectful communication can become the norm rather than the exception.
Goals of Care -- Communication Template
[most recently revised draft]
PART A: Document Goals of Care
Based upon comprehensive discussion between the patient ____________ (or surrogate) and the treating physician, the following explanation best describes the patient’s current goals of care:
_______________________________________________________________________________________________________________________________________________________________
EXAMPLES include but are not limited to: “return to prior living situation at previous functional status” or “return to prior living situation after physical therapy” or “remain in my home” or “be free of pain or breathlessness” or “maintain my privacy and dignity” or “be able to interact with my loved ones” or “attend my granddaughter’s graduation".
NOTE: “Do everything” is NOT a goal of care. Ask the patient (or surrogate) what ‘everything’ is intended to achieve.
NOTE: To set realistic goals, the patient (or surrogate) needs a clear description of what to expect.
Discuss and document if the patient wants aggressive life-support measures stopped and wants treatment instead to focus on comfort and dignity if any one or combination of the following is the most likely outcome:
____ being permanently unconscious (i.e., completely unaware of surroundings with no chance of regaining consciousness)
____ being permanently unable to remember, understand, make decisions, recognize loved ones, have conversations
____ being permanently bedridden and completely dependent on the assistance of others to accomplish daily activities (e.g., eating, bathing, dressing, moving)
____ being permanently dependent on mechanical ventilation
____ being permanently dependent on hemodialysis
____ being permanently dependent on artificial nutrition (tube feedings) and/or intravenous hydration for survival
____ death likely to occur within days to weeks and treatments are only prolonging the dying process
____ other (specify):
____________________________________________________________________________
PART B: Document Focus of Care
Based upon the above understanding of the patient’s goals of care: (check one)
_______The focus of care will be to restore the patient to a level of function compatible with the goals outlined above. Specific testing and treatments will be ordered by the patient’s physicians with the intent to achieve these goals.
_______The focus of care will concentrate on the patient’s comfort. Treatments that serve only to prolong the process of dying or place undue burden on the patient will not be initiated or continued.
PART C: Recommend Resuscitation Status
- Based on the patient’s current condition, prognosis, and comorbidities, and after weighing likely benefits, harms, and goals outlined above --
- The treating physician does / does not (circle one) recommend CPR in the event of cardiac arrest.
- The treating physician does / does not (circle one) recommend intubation in the event of impending respiratory arrest.
- The treating physician at this time cannot make a definitive recommendation (circle) regarding CPR or intubation.
- These recommendations have been discussed with the patient (or surrogate) with reassurance that if resuscitation is not performed, treatment will be provided with the goal of comfort and dignity: Yes / No
- For the patient (or surrogate) who decides to be resuscitated (i.e., Code 1) despite the treating physician’s recommendation against such, the treating physician has discussed the likely immediate consequences of CPR if successful: Yes / No
- Person with whom to speak if the patient lacks decisional capacity:
Name: _________________________________
Relation: _______________
Phone Number: ______________
