End-of-Life Challenges in Primary Care Medical Futility
September 20, 1999
End-of-Life Challenges in Primary Care Medical Futility
Author: Michael Sparacino, MD, Professor of Family Medicine, North Iowa Family Practice Residency, Mason City, Iowa.
Peer Reviewers: Brian Schwartz, MD, FACP, Director of Medical Ethics, Kettering Medical Center, Kettering, Ohio; and David C. Sloan, MD, Pathologist, Pathology Associates of Mason City, Mason City, Iowa.
Editor’s Note—Increasingly, we recognize death, dying, and end-of-life issues as important parts of our societal life cycle. As primary care physicians, we embrace these issues as profound, potentially beneficial areas of our patients’ lives. We will be called upon to help guide our patients through these challenging life experiences. This discussion begins a series of articles on various end-of-life issues as they relate to primary care providers. It focuses on the concept of medical futility as it applies to the care of our dying patients. As with most issues dealing with medical ethics, there are very few unequivocal situations. Much more commonly, the question of whether medical care is futile arises in a scenario of extreme distress among family members, miscommunication, and subsequent conflict. Factors that may lead to futility situations are identified. Communication and negotiation skills directed at resolving conflict are discussed as well as creating fair processes to resolve intractable conflict.
Introduction
Unfortunately, nearly every clinician will face the scenario where a dying patient’s decision maker insists upon therapy that the physician thinks is futile. In fact, questions of medical futility constitute a significant number of ethics consults in hospitals.1 Often these cases can be extremely frustrating and upsetting for the health care team as well as the patient’s family. From the perspective of the health care team, the family can be seen as unrealistic, having the patient experience unnecessary pain and indignity before death. Professionals, feeling uncomfortable with conflict under such distressing circumstances, may feel the need to distance themselves from the patient and family, giving the impression that they are unconcerned. They may become accusatory toward family members and view family suggestions as unwanted encroachment on professional turf. Families, made especially sensitive during this life crisis, may perceive the health care team as uncaring. They may even accuse the team of being motivated by more malevolent considerations such as financial or racial aspects of the case. These circumstances make conflict nearly certain.
Like beauty, futility is in the eye of the beholder. Whether it is a physician who feels pressure to provide unjustified care or the family which is uncomfortable with continued aggressive care recommendations; no matter who is involved, the need to intervene, to do something, is intense. As physicians, we have been trained since medical school to intervene between a patient and his/her illness. Death is viewed as failure for physicians and an unacceptable outcome for our patients, no matter what the cause or illness.2
Illustrative Case
A 12-year-old male was struck by an automobile while riding his bicycle home from a Little League game. He has been your patient since age four, when his family moved to town. He was stabilized in the emergency room and transferred to the intensive care unit, where he is being treated for a devastating brain injury. He has steadily deteriorated to the point to where, despite maximal therapy, he has developed multiple organ failure. He is currently receiving artificial ventilatory support and is on maximal pressor support. His parents are convinced he is aware of everything and expect him to wake up soon. They insist on continued aggressive treatment.
Defining Medical Futility
For the purpose of this article, the scenario assumed will be one in which the patient’s family insists on care that the physician or other members of the health care team deems futile, as in the illustrated case. There have been a number of attempts to try and specifically define what exactly constitutes medical futility.4 Which type of care being given must be answered. Of the several definitions put forth, some seem particularly appropriate for use by primary care providers. These include:
1. Medical care that does not meet the goals of the patient
2. Care that serves no legitimate goal of medical practice
3. Care that is ineffective more than 99% of the time
4. Care that does not conform to accepted community standards.5
Even with useful definitions to guide us, most medical futility cases are not straightforward and the potential for significant conflict between and among all participants in the discussion is common. In the case described above, such a young patient so unexpectedly injured makes it difficult for the health care team to withdraw therapy, even if clearly futile. Table 1 lists examples of medical interventions that may raise questions of futility.5
| Table 1. Examples of Medical Interventions That may be Considered Futile |
| • Life support in patients in a persistent vegetative state |
| • Resuscitation in patients with life-threatening illness |
| • Chemotherapy in patients with advanced refractory tumors |
| • Antibiotics and hydration for patients in the final stages of dying |
The issue of whether a specific medical intervention should be deemed futile is never clear cut. Some would argue that, in order to avoid conflict with a patient and his/her family, physicians ethically should not offer care that is unlikely to alter the course of the patient’s illness. On the contrary, why should the physician’s values override those of the patient and family, whose decisions and values may be religiously based? In response to this dilemma, and others like it, several groups have advocated to define medical futility on a case-by-case basis.6
Medical Futility as a Source of Conflict
Conflict is among the most common aspects of medical practice that physicians avoid. Unfortunately, conflict is common when dealing with cases of medical futility. When faced with conflict, one of the first things the physician must do is to try to resolve the conflict through negotiation with the patient and family. Successful negotiation can only come through a genuine understanding of the perceptions of the patient and family. The best way to deal with conflict initially is to find common ground that both parties can agree upon. In the case of medical futility, this is usually straightforward in that one of the herald obligations of the family physician is to support the patient and family as well as ease their suffering. Statements acknowledging commonalities such as "I think everybody wants what is best for your son" reinforce to the family that the physician is committed to doing what is best for the patient. It also allows an initial reference point in beginning negotiations on what types of therapy should or shouldn’t be contemplated in dealing with the dying patient. In the illustrated case, building an alliance with the family to "do what is best" for the patient serves as a starting point. Through subsequent discussions and education, the specific definition of exactly what is best for the patient can be accomplished. Remember that during negotiation, the patient and family are partners, not opponents. It is absolutely imperative to understand why there is disagreement between the family and the primary care physician. When beginning the negotiating process with the patient and/or family, an important consideration is the degree of preparedness on the part of the primary care provider. Avoiding surprises during the negotiations is by far and away the best method of dealing with them. Table 2 lists some of the more important issues when negotiating with the patient and family.
| Table 2. Important Negotiation Issues |
| • Be prepared |
| • Identify the central issue and break it into its simplest components |
| • Determine who should be involved |
| • Consider each party's real needs |
| • Develop and communicate your strategies |
Review the case, consider as many alternatives as possible, and think about the consequences of each prior to meeting with the patient and family. Try and have an understanding as to the particular needs of each of the family members. If possible, try and select a spokesperson for the family to maximize the quality of communication.7
Ideally, the patient should have had advanced care planning and would have his/her wishes clearly communicated to a trusted subordinate who would carry out those wishes without excessively emotional interplay.8,9 Unfortunately, reality dictates that such communication can be lacking. In this case, determining why there is conflict can be addressed by asking a few questions. Table 3 lists appropriate questions to ask when conflict arises over medical futility.
| Table 3. Common Questions to Ask When Conflict Arises |
| • Is the surrogate decision maker the appropriate person? |
| • What are the specific misunderstandings? |
| • Are there personal factors involved? |
| • Is there a conflict in values? |
If the patient lacks the capacity to make decisions for him/herself, the primary care provider must rely on another person to make decisions regarding medical care of the dying patient (i.e., the surrogate decision maker). In an ideal situation this person would be named by the patient in advanced directives and would have been educated by the patient as to what the patient would want to have happen in a variety of hypothetical situations. Several criteria exist for the ideal decision maker.5 Table 4 lists these criteria.
| Table 4. Criteria for Surrogate Decision-Maker Selection |
| • Patient preference |
| • Legislated hierarchy for decision makers |
| • Likely to know what the patient would have wanted |
| • Able to reflect the patient's best interests |
| • Has the cognitive ability to make decisions |
It’s always a good idea to be familiar with particular state statutes regarding the selection of surrogate decision makers.8 In the rare instance when the primary care provider feels that the surrogate is not acting in the patient’s best interests, he/she must go to court and have a court-appointed surrogate declared.10
A common theme that underlies conflict is miscommunication on one or more of several levels that result in misperception on the part of one of the parties. Several factors are involved in misperception and misunderstanding. Some of the more common ones are listed in Table 5.8
| Table 5. Common Factors Contributing to Misperceptions |
| • Decision maker is unaware of the diagnosis |
| • Language includes too much jargon |
| • Conflicting or rapidly changing information |
| • Unrealistic optimism by providers |
| • Stressful environment |
| • High emotional stress |
| • Unprepared psychologically |
| • Inadequate cognitive ability |
In order to best respond to misperceptions and subsequent conflict, the physician must first precisely understand what the patient and family are saying. One of the most widely quoted works in educating physicians on the communication of important information is Robert Buckman’s How to Break Bad News: A Guide for Health Care Professionals. Using Buckman’s six-step protocol is a good first step in maximizing the quality of communication.11 Table 6 summarizes Buckman’s six-step protocol.
| Table 6. A Six-Step Protocol for Communicating Important Information |
| • Get started |
| • Find out what the patient/family knows |
| • Find out what the patient/family wants to know |
| • Share the information |
| • Respond to patient/family feelings |
| • Plan and follow-up |
Even before beginning a conversation with the patient and family an investment of a few moments to refamiliarize yourself with the major details of the case and confirm any controversial information is helpful. If rehearsal is needed, take the time to do it. It is also worthwhile to select an appropriate private, yet comfortable site to convey the information. While conversing with the patient and family, ensure to the best of your ability that interruptions are minimized (shut off beepers, hold calls, post the room as private, etc.).12
Despite the best preparation, misperceptions regarding futility of care are not uncommon. Table 7 lists some of the many things that can be done in response to misperceptions by patients and their families.8
| Table 7. Responding to Misperceptions |
| • Choose a primary communicator |
| • Give information in manageable quantities |
| • Give information in different formats |
| • Use language that is understandable |
| • Frequently repeat information |
| • Do not hedge to soften the information |
| • Encourage written questions |
| • Provide support as needed |
| • Involve other professionals |
In addition to the already contentious nature of medical futility disagreements, personal factors may also play important roles in aggravating disagreement.13 As medicine has become increasingly exact in its scientific explanation of the nature of the diseases of humans, the physician’s role as human companion has correspondingly become less important. Indeed, the proliferation of various "healers" mirrors society’s need for interventions more dependent on human relationships rather than scientific explanation. Lack of effective human relationship in the practice of medicine leads to the possibility of mistrust among patients and their families. This mistrust stems from a lack of understanding of some of the more complex medical concepts present in the patient and the innate sense that practitioners who depend only on scientific explanation have more control of the situation. When information is presented by many providers in various formats, unintentional and inconsequential disparities may seem like unreliable (therefore untrustworthy) information from the family’s perspective.14 If the physician feels that mistrust is evident in the patient and/or family, active measures to restore trust must be carried out. Addressing the issue directly demonstrates concern to the patient and family. Listening and trying to understand patient and family issues is also important. Liberal use of second opinions by providers that the patient and family trust helps to alleviate mistrust.
Families of dying patients are actively grieving, whether or not they are in denial concerning the terminality of the patient. The use of a multidisciplinary team that includes clergy can help families manage the grieving process. Often, getting the family to realize what truly is in the best interest of the patient helps to minimize the chance that significant conflict will arise.15
The power of the family unit throughout the entire family life cycle is potent. This power can be used either productively or counterproductively by various family members, depending on the types of relationships that have developed between them over time.16 Dysfunctional relationships between family members produce abnormal grief reactions and inappropriate guilt, which can lead to poor decision making. The stereotypic situation is the long-estranged relative who arrives late in the development of the crisis threatening legal action over any decision considering potentially futile therapy. Using Buckman’s protocol could help focus on needs and fears of the family member in question, but typically communicating with such relatives requires skill and patience. Trying to successfully resolve longstanding intrafamily issues is probably overoptimistic, especially in time of crisis. Instead, try to recognize dysfunctional relationships in the context of the family and use this understanding to optimize communication. This could require input from the entire health care team, including nurses, social workers, and the clergy. Developing a family genogram may help to define relationships and provide context and insight into family dynamics.17 This would also allow the physician to help more effectively in the decision making of a particular spokesperson who represents family views accurately and communicates well.
Particularly distasteful, and fortunately uncommon, is the scenario of a surrogate making decisions based on some selfish interest rather than the patient’s good. This may stem from either the surrogate losing the financial support he/she had while the patient was alive or from the surrogate anticipating inheritance upon the patient’s death.18 Decision makers may also ask the physician to falsify insurance documents concerning the onset of illness or disability. This is particularly common in cases where the illness is sudden or unanticipated. Physicians should be sensitive to these problems and anticipate issues of secondary gain. When secondary gain is suspected as a reason for decision making, asking for help from other disciplines such as social workers or, if the institution has one, an ethics committee. Ethics committees can be extremely useful to the clinician. They can add confidence to clinical decisions for dying patients as well as focus on other areas of care for the terminal patient. They may also help to avoid conflict between the health care team and the patient’s family. Currently, the Joint Commission for Accreditation of Health Care Organizations (JCAHO) does not mandate the existence of ethics committees per se, though it does mandate many of an ethics committee’s functions. Ethics committees are typically made up of physicians, nurses, social workers, community representatives, clergy, and legal experts. This breadth of expertise allows the committee to be sensitive to many social and cultural issues. It also allows a degree of empathy between the committee and the patient and family, helping to avoid conflict.19
Even with tools such as ethics committees, conflict still arises. Most legitimate conflict surrounds a disagreement over values between the physician and the dying patient’s family. Specifically, parties usually disagree over either goals of therapy or benefit to the patient.20 For example, the family’s goal may simply be the preservation of life. Other considerations, such as the quality of life or the degree of pain and/or disability, are not a part of that goal. Health care workers may disagree with the notion that preservation of life as an end in itself is valid. In terms of differences over patient benefit, party positions may not be so clear. Probably the best example of this is the family’s insistence that an experimental or miracle cure be continued despite the patient’s lack of response to the protocol. Health care providers, realizing the lack of effect, may decide that palliative care would most benefit the patient, again setting the stage for conflict.
At the heart of many of the conflicts that arise over instances of medical futility is a difference in basic values of the patient, his/her family, and the health care provider/system. These value differences can be categorized broadly into three general areas—religious considerations, miracles, and value of life.5
Being sensitive to the patient’s religious convictions can go a long way toward recognizing and avoiding conflict in cases of medical futility. Specifically addressing the patient’s religious beliefs and the role they play in decision making can help the primary care physician more accurately assist the patient in making these decisions, including those concerning medical futility.21 Often, a patient will respond to questions of further therapy with words to the effect, "It’s God’s will." Being specific about probable situations in which a decision had to be made by the health care staff can help provide insight into a patient’s wishes. For example, saying, "If your heart should stop beating, would I be doing the right thing in doing CPR?" focuses on the specific issue at hand while at the same time lending insight into the patient’s true wishes. If, after a careful assessment of the patient’s wishes in the context of the patient’s religious convictions, the physician feels his/her own religious beliefs are compromised, arrangements for transfer of care to another provider must be made as early in the situation as possible. It is sometimes difficult for physicians, or anybody else for that matter, to come to grips with personal religious beliefs as well as the realization of one’s own morality. Thinking about and being comfortable with these issues will go a long way in helping the physician to address these same issues with his/her patients.
Sometimes the patient and/or family may advocate for medically futile care in hope of the occurrence of a miracle. By definition, miracles are rare, unpredictable, supernatural occurrences. Often, explaining to the patient that if a miracle were to happen, it would happen regardless of the types of medical decisions being made. Another approach would be to ask if the family was interfering with God’s wish to "call the patient home" by continuing futile treatment. Again, these types of situations are perfect for formed ethics committees, which can help with communication and understanding. Having an ongoing relationship with local chaplaincy is essential in the care of the dying patient. Including the patient and/or family’s personal religious consultant can increase the amount of trust between physician and patient.22
The foregoing discussion was meant to carefully consider the nature of situations that may lead to conflict over medical treatment between the physician and patient/family. Understanding the nature of the conflict often leads to obvious and acceptable solutions. But this is not always so. Table 8 summarizes a due process approach to conflicts that arise between the physician and patient.23
| Table 8. A Due Process Approach to Futility Situations |
| • Earnest attempts at negotiation in advance |
| • Joint decision making |
| • Negotiation of disagreements |
| • Involvement of an institutional ethics committee |
| • Transfer of care to another physician if necessary |
| • Transfer to another institution if necessary |
| • If unable to transfer, the intervention need not be offered |
Many hospitals have policies related to the provision of futile care that use a step-by-step process of communication and problem solving to help resolve differences between the physician and the patient and/or family. This type of due process approach is strongly recommended by the AMA’s Council on Ethical and Judicial Affairs, and should include the following steps.5
1. Attempt to negotiate an understanding between patient, surrogate, and physician about what constitutes futile care in advance of actual conflict. This step can preempt conflict.
2. To the maximum extent possible, joint decision-making should occur between the patient or surrogate and physician. Negotiate solutions to disagreements, if they arise, in order to reach a resolution satisfactory to all parties. Use the assistance of consultants as appropriate.
3. If disagreements persist, suggest the participation of other consultants, colleagues, and/or a group, such as an institutional ethics committee. These additional resources may provide a reasoned impartial assessment and evaluation of the conflict. The value of ethics committees has been well described in this article. The Joint Commission for Accreditation of Healthcare Institutions requires hospitals to have an ethics committee or a functional counterpart to aid its physicians, patients, and families to resolve difficult issues. The aim is to provide the maximum possible space for patient autonomy in the conduct of ethical medical practice.
4. If the institutional review supports the patient’s position and the physician remains unpersuaded, transfer of care to another physician within the institution may be arranged.
5. If the review supports the physician’s position and the patient/surrogate remains unpersuaded, transfer to another institution can be carried out if both the transferring and receiving institutions agree. If transfer to another physician in another institution is not possible, the intervention need not be offered. However, there needs to be a diligent search for this option and legal input is suggested.
6. This process does not solve the problem when no receiving institution can be found. The issue of cost of medical care, both to patients and families as well as to the institution and the health care system, is implicit in many of these steps.
Summary
Situations involving true medical futility are uncommon. More often than not, the question of futility comes up when there is miscommunication and conflict. Sources of conflict may be identified as follows. The proxy may not be performing the role well. There may be misunderstandings over prognosis. There may be personal factors such as distrust or guilt. Or there may be differences in values. For intractable difficulties a fair process for conflict resolution is recommended. This process should include, if at all possible, prior discussion as to what constitutes futility, joint decision making with the patient/family and other parties, involvement of a consultant and/or ethics committee, and transfer of care to another physician or institution if necessary. Rarely, if no physician or institution can be found to provide the intervention, it may be necessary to withdraw or withhold what the patient and/or family has requested.
References
1. Halliday R. Medical futility and the social context. J Med Ethics 1997;23(3):148-153.
2. Harper W. The role of futility in improperly limiting the scope of clinical research. J Med Ethics 1998;24(5): 308-313.
3. Spielman B. Bargaining about futility. J Law Med Ethics 1995;23(2):136-142.
4. Wiener RL, et al. A preliminary analysis of medical futility decision-making: Law and professional attitudes. Behav Sci Law 1998;16(4):497-508.
5. American Medical Association Institute for Ethics. Education for Physicians on End-of-Life Care (EPEC), Module 9, Medical Futility. Trainer’s Guide. Chicago: American Medical Association; 1999. Supported by a grant from the Robert Wood Johnson Foundation.
6. Council on Ethical and Judicial Affairs. Medical Futility in End-of-Life Care. In: Council on Ethical and Judicial Affairs Reports of End-of-Life Care. Chicago, IL: American Medical Association; 1998:44-49.
7. Belzer EA. What the family physician needs to know about negotiation. Fam Pract Man 1995:66-75.
8. American Medical Association Institute for Ethics. Education for Physicians on End-of-Life Care (EPEC), Module 1, Advance Care Planning. Trainer’s Guide. Chicago: American Medical Association; 1999. Supported by a grant from the Robert Wood Johnson Foundation.
9. American Medical Association Institute for Ethics. Education for Physicians on End-of-Life Care (EPEC), Module 7, Goals of Care. Trainer’s Guide. Chicago: American Medical Association; 1999. Supported by a grant from the Robert Wood Johnson Foundation.
10. Olson E, et al. Treatment termination in long-term care: What about the physician? What about the family? J Long Term Home Health Care 1997;16(1):14-21.
11. Buckman R. How to Break Bad News: A Guide for Health Care Professionals. Baltimore, MD: The Johns Hopkins University Press; 1992:54-78.
12. Dunn PM, et al. Discussing futility with patients and families. J Gen Intern Med 1996;11(11):689-693.
13. Caplan AL. Odds and ends: Trust and the debate over medical futility. Arch Intern Med 1996;15:125(8): 688-689.
14. Brett AS, et al. Beyond futility to an ethic of care. Am J Med 1995;99(4):443-444.
15. Jecker NS. Medical futility and care of dying patients. West J Med 1995;163(3):287-291.
16. Christie-Seely J. The family in family medicine. American Academy of Family Physicians, Home Study Self Assessment 1988;106:42-47.
17. Tong R. Toward a just, courageous, and honest resolution of the futility debate. J Med Philos 1995;20(2): 165-189.
18. Kopelman LM. Conceptual and moral disputes about futile and useful treatments. J Med Philos 1995;20(2): 109-121.
19. Schwartz BP, et al. Primary care medicine and some medical/ethical issues. Primary Care Reports 1997;25: 231-239.
20. Rhodes R. Futility and the goals of medicine. J Clin Ethics 1998;9(2):194-205.
21. Hinds PS. Knowing when enough is enough. J Pediatr Oncol Nurs 1996;13(1):1.
22. Ebell MH. When everything is too much. Arch Fam Med 1995;4(4):352-356.
23. American Medical Association Institute for Ethics. Education for Physicians on End-of-Life Care (EPEC), Module 9, Medical Futility, pp. 15-16. Trainer’s Guide. Chicago: American Medical Association; 1999. Supported by a grant from the Robert Wood Johnson Foundation.
CME Questions
35. Operational definitions of medical futility include:
a. care that does not meet the goals of the patient.
b. care that does not make legitimate medical sense.
c. care that is ineffective more than 99% of the time.
d. care that does not conform to accepted medical standards.
e. All of the above
36. Which of the following is not an example of medical interventions that may be considered futile?
a. life support in patients in a persistent vegetative state
b. resuscitation in patients with life-threatening illness
c. chemotherapy in patients with advanced refractory tumors
d. narcotic analgesics in patients with bony metastatic tumors
e. antibiotics and hydration in patients who are in the final stages of dying
37. Which of the following are considered important issues when negotiating with families over medical futility?
a. Preparedness
b. Simplification of complex issues
c. Considering the family’s real needs
d. Effectively communicating strategies
e. All of the above
38. Criteria for the selection of a surrogate decision maker include all of the following except:
a. patient preference.
b. financial interest of the decision maker.
c. decision maker’s likelihood of knowledge of the patient’s wishes.
d. ability to reflect patient’s interests.
e. cognitive ability to make decisions.
39. When communicating important information to patients, which of the following are important?
a. Finding out what the patient knows
b. Finding out what the patient wants to know
c. Sharing the information
d. Responding to the patient’s feelings
e. All of the above
40. All of the following are true about ethics committees except:
a. they are multidisciplinary in nature.
b. they help clarify areas of potential conflict.
c. they have the authority to take over responsibility for care of the patient.
d. they may include clergy.
e. they may be used as ad hoc consultants in controversial cases.
41. All of the following are important in providing due process over futile treatment except:
a. Physicians must not withhold futile care if the family insists.
b. there should be good faith negotiation
c. ethics committees should be involved
d. transfer of patient care to another physician may be necessary
e. decision making should be shared between physician and patient/family
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