Decision-Making at the End of Life

Bruce J. McIntosh, M.D., Associate Faculty,
St. Vincent's Family Practice Residency Program

Introduction

Making decisions is a fundamental part of the practice of medicine. Working together, physicians and patients routinely review options for diagnostic studies and treatment and decide what to do. Doctors are familiar and comfortable with this process. As patients approach the end of life, however, the decision-making process can become more difficult for several reasons: the options for treatment and the benefits they offer the patient may be more limited; the patient may be unable to participate in the process; and the choices become so obviously and immediately matters of life and death. These different circumstances often call for different approaches to making such decisions. The purpose of this article is to outline a process to help answer the difficult questions that arise regarding care at the end of life.

Step I: Identify the Decision Maker

The first step in making such difficult decisions is to identify the person or persons who will make the decision. Modern medical ethics places great emphasis on respecting personal autonomy, i.e. honoring the right of the individual to determine what is or is not done to himself or herself. Therefore the decision-maker is always, ultimately, the patient. On occasion, however, when the patient is unable to express his or her wishes, it is necessary to identify someone else to speak on his or her behalf.

When the Patient Has the Capacity to Make Decisions

In order to be able to direct his or her own health care, the patient must have the capacity to a) understand his or her medical condition and prognosis, b) understand the treatment options available and the risks and benefits of those treatment options, and c) formulate and express his or her determination to accept or refuse treatment. Such a patient may give his or her informed consent (or refusal) for care, and the medical treatment team should honor that decision.

When the Patient Lacks Decision-Making Capacity

Some patients cannot meet the above criteria for capacity due to neurological problems such as coma or dementia, or due to psychiatric disorders such as psychosis or severe depression. In such cases a single physician familiar with the patient's circumstances can often make a determination that the patient lacks capacity. When in doubt, the attending physician should seek a second opinion to clarify the situation. When it is determined that the patient lacks capacity, other sources of information regarding the patient's wishes should be sought.¹

•  Advance Directives: While he or she still had capacity, the patient may have completed a document that expresses his or her wishes for future care. An advance directive may take several forms. It may be a Living Will which states that he or she would (or would not) want certain types of care under certain conditions. It could also be an Appointment of a Surrogate to speak on his or her behalf, or it could a Durable Power of Attorney for Health Care Matters which empowers another person to perform many functions for the patient, including making decisions regarding care at the end of life. Two points should be emphasized about Advance Directives. First, they do not have any power while the patient still has the capacity to speak for himself or herself. Physicians should not approach surrogates or review living wills for answers to questions regarding health care while the patient still has the capacity to say what he or she wants. The patient is free, for instance, to revoke such documents at any time. Second, these documents must be read with close attention to what they actually say. The statement, for instance, that a patient has an advance directive does not tell you what he or she wants done; it tells you where to look to find what he or she wants done. It should not be assumed that all advance directives refuse care.
   
• Proxy Decision-Makers: While a surrogate is someone to whom the patient delegates decision-making authority, a proxy is one to whom the responsibility falls by default when the incapacitated patient has not executed an advance directive. Unless a court has previously appointed a legal guardian for the patient, family and friends should be approached in the following order:
  • Patient's spouse
  • Adult children
  • Patient's parent
  • Adult siblings of patient
  • Adult relative who is familiar with the patient's values and beliefs
  • Close friend of the patient

This order, dictated by common sense and standard practice, has been codified in the Florida statutes.² Proxies (and surrogates) are tasked with directing care for the incapacitated patient in accordance with the principle of substituted judgement. That is to say, they are to make the decision they believe the patient would make if he or she could speak for himself or herself, based on their knowledge of the patient and his or her value system. When there is more than one adult child or sibling and they disagree about what the patient would want, care should be provided according to the directions of the majority of those available to participate in the decision-making process.

Step II: Review and Clarify the Medical Facts

It is a basic premise of medical ethics that good decisions begin with good facts. Having identified the person who is to make the decisions about care, the physician must seek to insure that that person understands the medical facts of the case as fully as possible. This can be a challenge, but good communication at this point can prevent many later problems. Patients, surrogates and proxies who do not fully comprehend the medical condition, its expected course, the treatment options available and what benefits they offer may not make optimal decisions for care. There are several steps the physician can take to help the patient or his or her representative understand these issues:

Choose the Right Time and Place

It important for discussions of end-of-life care issues to be held in an environment conducive to good communication. Quiet and privacy are fundamentally important. On occasion such discussions must be held at the patient's bedside, but whenever possible they should be conducted in a separate conference room or in the physician's office. Likewise, the physician must budget adequate time to review the situation, allow reflection by the patient or his or her representative, and answer questions. This is not a task which can be accomplished effectively by a physician moving rapidly on rounds. Hasty and incomplete communications will result in poor decisions and requests for further conferences, so time invested at this stage will pay great dividends in time saved later.

Have Other Family Members Present

Unless there are issues of confidentiality, it is desirable to have other significant people in the patient's life present at such discussions. This insures that all involved are working with the same information. This in turn saves time and trouble later by preventing second-guessing by those who have heard fragmentary second-hand accounts of the situation.

Use Easily Understandable Language

Many words and phrases that physicians use routinely in communicating with other medical personnel have little or no meaning to non-medical people. It is easy to slip into "medspeak" which conveys little useful information to the patient or his or her representative. Physicians should choose everyday words that are easily understood and that accurately communicate the facts of the situation in a way the decision-maker can comprehend. Physicians who are uncomfortable in delivering bad news must guard against
the tendency to hide behind medical terminology. The phrase, "The prognosis is grave," may be easier to deliver to an anxious family, but it will be of less help to them in making decisions than the more straightforward, "We don't expect him to survive."

Be Sensitive

While trying to communicate clearly, the physician must also be sensitive in conveying bad news. Patients and families may make bad decisions if their decision-making process is clouded by the perception that the physician is uncaring and unsympathetic. It is important, for instance, not to seem to convey the idea that there is no hope for the patient. There may be no reasonable hope for a cure or even for survival to discharge, but one can always hold out hope for optimal care and comfort during the patient's remaining time.

Be Consistent

While the need for good communication between the physician and the patient or his or her representative is obvious, the need for good communication among the members of the medical treatment team should also be emphasized. All those participating in the care of the patient should seek to provide a consistent impression of the patient's condition and prognosis. It is not uncommon for one physician caring for the patient to emphasize that patients in his or her condition rarely survive, while another physician emphasizes that on rare occasions patients do survive. The information conveyed is the same, but the difference in emphasis can be very confusing to those making decisions about care.

Step III. Identify Ethically Appropriate Options

When all involved have a clear understanding of the medical facts, appropriate options for treatment can be examined. Any treatment that offers potential benefit to the patient can be considered. The potential benefit must be measured against the burdens, which the treatment involves. It is, of course, the patient's point of view on the relative weight of the benefits and burdens which matters, not the physician's. The burdens typically considered include the cost, inconvenience and side effects, which may occur with treatment. Early in the course of an illness, the potential benefits of treatment to the patient will generally outweigh the burdens so that treatment is chosen. Later, as burdens become greater and potential benefits become more remote, the quality of the patient's life may deteriorate to the point that further treatment may be refused. There are several principles which can help patients (and the physicians advising them) make good decisions at this point:

Withholding and Withdrawing Are Morally and Legally Equivalent

There is a common misconception that medical treatments, once begun, must be continued until death occurs, because withdrawing treatment would be equivalent to killing the patient. This is not correct. There is now widespread consensus in ethics (now codified in the Florida statutes) that withdrawing medical treatment (i.e. stopping a treatment in progress) is equivalent to withholding (i.e. not initiating treatment).³ This is an important concept for two reasons: First, it gives the decision-maker the option of discontinuing treatments which are no longer offering the patient real benefit. Second, it frees the medical team and the decision-maker to try anything that might benefit the patient without fear that they will be "stuck" having to continue it, even if it proves useless. Withholding and withdrawing treatment do not cause the patient's death. They allow the patient to die a natural death of the condition that required life-sustaining medical therapy.

Artificial Nutrition and Hydration Are Life-Sustaining Medical Therapy

When families and physicians think of life-sustaining medical therapy they ordinarily think of high-technology equipment and procedures such as ventilators, pacemakers and the infusion of vasoactive drugs. Actually, however, the concept of life-sustaining medical therapy includes many other less extreme measures. Any treatment modality which supports or replaces a vital natural function can be considered a life-sustaining medical therapy.^4,5 This includes nutrition and hydration when administered artificially by vein or via nasogastric or gastrostomy tube. Therefore the decision to provide artificial nutrition and hydration to patients who have permanently lost the ability to take nourishment by mouth should be a considered decision based on an assessment of the benefits and burdens involved for the patient.^6,7

There Are Limits to the Choices Which May be Made

While most decisions made by or on behalf of patients should be honored, some requests fall outside the range of acceptable choices. The health care team is not obliged to honor (indeed, should not honor) requests for physician aid in dying or for care which is futile.

• Futile Care is care which is useless or ineffective. It offers no benefit to the patient. There has been considerable discussion on how to apply the definition of futile care in practice.⁸ It can be argued that the term should be restricted to situations in which the care being considered is useless in the strictest sense, i.e. the treatment has no physiologic effect. Physicians should guard against the tendency to apply the term to situations in which the care is cumbersome and offers little (but not no) benefit to the patient. In such cases the physician may be making an unconscious benefit-burden analysis; weighing the benefits and burdens involved for the patient is better left to the patient or his or her representative.
• Physician Aid in Dying includes both euthanasia (in which the physician administers a drug directly intended to cause death) and assisted suicide (in which the physician makes potentially lethal drugs available to the patient with the knowledge that the patient intends to use them to end his or her life).⁹ These actions are illegal in all jurisdictions except the state of Oregon, and most would argue they are unethical everywhere.^10,11,12 Requests for aid in dying should not be honored but should instead be viewed as indications of inadequately managed patient symptoms. The physician, while declining to provides the means to hasten death, should attempt to identify the source of the patient's despair (e.g. inadequately treated pain, unrecognized depression, alienation from loved ones) and treat it.

Medication Sufficient to Control Symptoms Can and Should Be Administered

Because of concerns about causing respiratory depression or drug addiction, many physicians fail to provide medication in amounts sufficient to control their patients' pain and other symptoms.¹³ Much unnecessary suffering occurs because of this well-intentioned but needless reluctance to use effective doses of effective medications. Physicians can and should prescribe pain-relieving medications in sufficient doses to control the symptoms they are intended to treat in terminally ill patients, even when those doses are higher than those usually needed in other types of patients.¹⁴ Respiratory arrest is much less likely in such circumstances than is commonly feared, and even if it should occur, the physician would be blameless if his or her primary intent was to treat the patient's symptoms. Such unintended secondary effects are not euthanasia or assisted suicide.¹⁵

Proxy and Surrogate Decisions Should Be the Decisions the Patient Would Make

Many discussions with surrogates and proxies regarding end-of-life care get off to a bad start because physicians begin by asking the wrong question, typically, "What do you want us to do?"¹⁶ Family and friends, not wanting to feel responsible for discontinuing care, are prone to say, "Do everything." In fact, however, proxies and surrogates are tasked with directing care for the incapacitated patient according to the principle of substituted judgement. That is, they are to make the decision they believe the patient would make, based on their knowledge of the patient and his or her value system. Thus the correct question with which to begin discussions of end-of-life care is, "What do you think your loved one would want us to do?" This allows the family to reflect on what the patient considered important in life and to say, as is often the case, "She would never have wanted to be kept alive like this."

Step IV. Implement Plan of Care with Specific Orders

Once decisions have been made regarding the nature and extent of the care to be provided, the treatment plan should be implemented with specific orders. This insures that all involved in the care of the patient have the same understanding of what is to be done. When a decision has been made that cardiopulmonary resuscitation would not benefit the hospitalized patient, for instance, an order documenting the "No CRT" status should be entered in the hospital record along with documentation of the discussions leading to that decision. Patients or their surrogates and proxies may, of course, indicate a desire to receive full cardiopulmonary resuscitation efforts even when the physicians caring for them believe it is not in the patient's best interests. These wishes should be respected. The act of conducting a "slow code" (i.e. going through the motions of cardiopulmonary resuscitation without making a serious effort to revive the patient) cannot be defended.¹⁷ All codes can, of course, be terminated when it becomes apparent that the patient cannot be resuscitated.

The "Florida Do Not Resuscitate Order" is a form allowing patients who are not hospitalized to be placed on a no-code status. This is a useful precaution because it is common for distressed family members of the terminally ill patient to call 911 when death appears imminent. If there is no "Florida Do Not Resuscitate Order" available, rescue personnel who have been called to the home are obligated to attempt resuscitation. When this documentation of the patients' status and wishes is available, however, rescue personnel can limit their interventions to comfort and supportive measures. These forms, printed on a distinctive canary-yellow paper, may be obtained from the Clinical Resource Management Department in most medical facilities or may be ordered by calling the Department of Health, Bureau of Emergency Medical Services, at (850) 245-4440, extension 2742.

It must be emphasized that a decision to withhold or withdraw life-sustaining medical therapy is not a decision to withhold or withdraw all care. Comfort and supportive measures must be continued. Physicians accustomed to seeking to cure their patients may sometimes feel that there is little left for them to do once the expectation of cure has been surrendered. In fact, however, there is still much for the physician to do in insuring that the patient is as comfortable as possible for the time he or she has left. Many terminally ill patients do not die immediately, and they and their families continue to have many day-to-day questions and problems; the physician continues to play a vital role in the management of the patient until - and in the case of the family, sometimes after - death occurs.

If the decision has been made to change the goal of care from cure to comfort, consideration should be given to making a referral to a hospice organization at the earliest opportunity. Hospice personnel have special expertise in the management of pain and other symptoms associated with terminal illness, and their greater comfort level in dealing with death and dying is itself a comfort to patients and their families. Referral to hospice should not be viewed as giving up hope, but rather as a matter of shifting the focus from hope for prolonged length of life to hope for improved quality of life.

While this discussion has focused on decisions to withhold or withdraw life-sustaining medical therapy, many patients (or their surrogates or proxies) will initially choose continuation of aggressive care. These choices should be honored. As time passes, the degree to which the benefits and burdens of therapy affect the patient's quality of life will become apparent, leading to opportunities to repeat the decision-making process.

Resolving Disagreements

In most cases, when all of the parties involved have the same understanding of the circumstances, there will be general agreement on the correct course of action. Not uncommonly, however, there will be disagreements. Family members may disagree with the decisions made by the patient or his or her proxy, or the members of the medical team may feel the decision-maker has made a bad choice. Just as there is an orderly process to making decisions, there is a process that can facilitate the resolution of such disagreements.

Repeat Efforts to Improve Communication and Clarify the Situation

Despite everyone's best efforts to insure that all those involved have the same understanding of the medical facts of the case, failures of communication do occur, leading to misunderstandings and disagreements. Reviewing the medical findings and the risks and benefits of the management options available will sometimes resolve these problems. Sometimes the point needing clarification is the fact that it is not necessary - or even possible - to satisfy everyone. The primary obligation of the medical treatment team is to honor the informed decision of the patient or his or her representative, within the limits previously outlined.

Ethics Advisory Committee Consultation

If significant disagreement persists after efforts to improve communication, consultation with an institutional Ethics Advisory Committee may be helpful.¹⁸ Some disagreements are not disagreements about facts but about values, and such a consultation can help to clarify which values are in conflict. Ethics Advisory Committees do not generally make decisions regarding patient care. Rather, they serve an advisory role, facilitating communication and assisting those involved in thinking through the ethical issues of the situation. This will not necessarily result in immediate resolution of the disagreement, but it can be helpful in clarifying legitimate courses of action. Consultation with an Ethics Advisory Committee is also thought to offer some degree of protection against subsequent second-guessing of disputed management decisions.

Recourse to the Legal System

When all less burdensome measures to resolve disagreements have failed, it may become necessary to turn to the courts for a resolution. It should be noted that at this point the focus has shifted from identifying the right thing to do to defining the legal thing to do. The judicial system is poorly adapted to examining issues of medical ethics, and most jurisdictions would prefer that such questions be resolved in collaborative discussions among physicians, patients and families.¹⁹ Sometimes, however, recourse to the legal system is the only way in which disagreements can be equitably resolved while the rights of all those involved are protected.

Summary

Physicians, patients and patients' families often face difficult decisions as the end of life approaches. A clearly defined decision-making process, guided by a knowledge of ethical principles, help those involved in identifying the right thing to do.

References

1. Aitken PV. Incorporating Advance Care Planning into Family Practice. American Family Physician 59:605, 1999.

2. Florida Statutes 754.401- The proxy.
3. Ackermann RJ. Withholding and Withdrawing Life-Sustaining Treatment. American Family Physician 62:1555, 2000.
4. Brody H, et. al. Withdrawing Intensive Life-Sustaining Treatment - Recommendations for Compassionate Clinical Management. New England Journal of Medicine 336:652, 1997.
5. Florida Statutes 765.101 - Definitions.
6. McCann RM , Hall WJ and Groth-Juncker A. Comfort Care for Terminally Ill Patients. Journal of the American Medical Association 272:1263, 1994.
7. Gillick MR. Rethinking the Role of Tube Feeding in Patients with
   Advanced Dementia. New England Journal of Medicine 342:206, 2000.
8. Helft PR, Siegler M and Lantos J. The Rise and Fall of the Futility Movement. New England Journal of Medicine 343:293, 2000.
9. Gates TJ. Euthanasia and Assisted Suicide: A Family Practice Perspective. American Family Physician 55:2437, 1997.
10. Sullivan AD, Hedberg K and Fleming DW. Legalized Physician-Assisted Suicide in Oregon - The Second Year. New England Journal of Medicine 342:598, 2000.
11. Florida Statutes 765.309 - Mercy killing or euthanasia not authorized; suicide distinguished.
12. Pellegrino ED. Doctors Must Not Kill. The Journal of Clinical Ethics 3:95, 1992.
13. The SUPPORT Principle Investigators. A Controlled Trial to Improve Care for Seriously Ill Hospitalized Patients. Journal of the American Medical Association 274:1591, 1995.
14. Whitecar PS, Jonas PJ and Clasen ME. Managing Pain in the Dying Patient. American Family Physician 61:755, 2000.
15. National Conference of Catholic Bishops. Ethical and Religious Directives for Catholic Health Care Services. Page 23, Directive 61. United States Catholic Conference, Inc. 1994.
16. Siwek J. Decision-Making in Terminal Care: Four Common Pitfalls. American Family Physician 50:1207, 1994.
17. Gazelle G. The Slow Code - Should Anyone Rush to Its Defense? New England Journal of Medicine 338:467, 1998.
18. American Academy of Pediatrics, Committee on Bioethics. Institutional Ethics Committees. Pediatrics 107:205, 2001.
19. Annas GJ. Conjoined Twins - The Limits of Law at the Limits of Life. New England Journal of Medicine 334:1104, 2001.

May, 2001/ Jacksonville Medicine

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