End-of-Life Care

Robert M. Nelson Jr.

“Nothing could stop you. Not the best day. Not the quiet. Not the ocean rocking. You went on with your dying.”

—Elegy for My Father (1970). 3.Your Dying.
Mark Strand

As is noted in the excerpt from this poem, there will always be patients who, despite the attempts of the patient, physicians, and other health care workers, reach a point where their decisions no longer focus on a cure, but rather, on how best to accomplish their final journey.

End-of-life care issues have become increasingly complex as new technologies and medications have expanded the options available to sustain life. Patients have also become more involved in all aspects of their medical care, as religious and cultural influences are increasingly recognized. The greater number of medical specialists involved in patient care further complicates end-of-life care issues. For the severely injured trauma patient, the time available to address end-of-life issues may be as short as hours, or it may extend over weeks or months.

This chapter will review end-of-life care issues that practitioners should be aware of, and it will provide a framework to assist practitioners in dealing with this important aspect of patient care. The chapter is divided into two sections. The first section addresses the issues surrounding the arrival at the decision that life-sustaining efforts will cease, and that end-of-life care issues need to be addressed. The second section addresses various aspects of end-of-life care.

BARRIERS TO EFFECTIVE END-OF-LIFE CARE

Clinicians with experience in caring for critically ill injured patients have recognized the large gap between the intended quality of end-of-life care and the product that is actually delivered for patients, their families, and the medical professionals who deliver the care.¹ National recognition of the importance of this issue resulted in a decision by the Institute of Medicine to designate improved end-of-life care as a national health priority. This gap was confirmed in a recent report by Nelson et al.² of a national survey of critical care providers. The survey disclosed important barriers pertinent to the practices and beliefs of physicians, features of patient and family attitudes toward death, lack of institutional preparedness, and physical characteristics of critical care units. Patients may unknowingly create a barrier by failing to have an advance directive in place when it is needed. A frequent, more frustrating problem is family certainty that an advance directive exists but cannot be located. Unrealistic expectations by family members contribute as well. Physician factors that were identified included insufficient training in end-of-life practices and too little time devoted to discussions of this problem with patients and families. Institutional factors included lack of space for private family consultations and the lack of a formally organized palliative care service.

ARRIVING AT THE DECISION

The initial step in the decision-making process is to correctly identify the patients who, due to their clinical condition, are unlikely to survive beyond a relatively short, yet undefined, period of time. Studies that have investigated the ability of physicians to predict when the end-of-life will occur have reported that only 70% of physicians can predict survival time within 33% of actual length of survival.³ Overall, physicians overestimate survival, and the more familiar they are with the patient, the more inaccurate their predictions. This inability to accurately predict survival time applies to many clinical conditions, including advanced
cancer—a disease for which one might expect better predictive ability due to 3 decades of accumulated data. For patients who have experienced significant life-threatening trauma, often with multiple system involvement, there are frequently even less data available to assist the physician in answering the question, “Doctor, how much time do I have left?”

The patient may have his or her own personal views regarding the type of life they want to live, and these views will influence the end-of-life decisions. Recently, the process known as Decision Analysis was outlined at a session on Clinical Palliative Care in the Trenches at the American College of Surgeons.⁴ Decision Analysis attempts to illustrate how the differences in the patient’s view of the importance of a given set of symptoms influences what they consent to. For example, some patients place greater value on having painfree time than on a longer survival time. It has been speculated that in the future, software programs will be available that will provide end-of-life plans that are based on the patient’s or surrogate’s individual preferences.⁵,⁶ Most likely such computer programs will only assist in plan development by helping quantify the effect of potential competing personal preferences. It would seem unlikely that these types of decisions could or should be a computer model rather than individual values.

LEGAL/INSTITUTIONAL POLICIES

Practitioners should be aware of the variety of institutional policies and procedures that all hospitals have in place to address end-of-life care issues. This section will briefly review the most pertinent of these policies. These policies vary from state to state, and they may also vary within a given hospital, especially if the hospital is sponsored by a religious organization.

Advance Directives

There are two types of advance directives—durable power of attorney and living wills. Durable power of attorney for health care is the easiest to interpret. It gives an individual the power to act as a decision maker for the patient. The most commonly used durable power of attorney directives are between spouses, or between parents and an adult child. A living will directs treatment in accordance with a patient’s personal preferences. Living wills have been criticized as being inadequate because it is not possible to anticipate all of the potential end-of-life scenarios,⁷ just as it is not possible to predict when death will occur.

There are three other policies that should be well understood by practitioners: (i) do-not-resuscitate orders, (ii) withholding or withdrawing life-prolonging procedures, and (iii) brain death. Brain death policies are usually written according to specific guidelines that are designated by state legislators. The policies address the conditions that constitute brain death, and what procedures must have been performed for brain death to be diagnosed. Once the diagnosis is made, the patient should be pronounced promptly, and the family should be informed immediately. Occasionally, conflicts arise due to a poor understanding of the issues surrounding the diagnosis of brain death. Once the diagnosis has been made, families should not be told that continuation of life-prolonging procedures remains an option. A do-not-resuscitate order implies that the patient has a terminal condition caused by injury, disease, or illness; that there is no reasonable probability of recovery; and that, without treatment, the condition can be expected to cause death. Usually, these conditions must be documented in the chart by the attending physician and by one additional consulting physician. A life-prolonging procedure is a mechanical or other artificial means of restoring, sustaining, or supplanting a spontaneous vital function. When applied to a patient in a terminal condition, life-prolonging procedures serve only to prolong the process of dying. For both do-not-resuscitate orders and for withholding or withdrawing life-prolonging treatment, a note should be placed in the chart that documents the discussions that the attending physician had with the patient and the family.

Do-not-resuscitate orders must be written by a licensed physician. Ideally, they specify precisely what the order implies. For example, the orders may specify that intubations and chest compressions are not to be performed. Issuing do-not-resuscitate orders may be complicated in patients who require a palliative procedure. Under these conditions, the implications of the do-not-resuscitate order must be clarified for the patient and caregivers, as well as the surgical and anesthesiology team, if applicable. The decision may be made to remove the do-not-resuscitate order during the procedure, and to reinstate it once the patient is awake.

Most institutions have separate versions of these policies for pediatric patients. The policies identify the decision maker, and they are appropriately modified for the population. For example, the diagnosis of brain death in a newborn or young child requires a different diagnosis, and different diagnostic considerations compared with older patients. In the pediatric population, the diagnosis of brain death is much more difficult to verify with standard testing.

For the patient who is not competent to make a decision, most states have proxy lists that identify, in order, the persons or entities that are responsible for making end-of-life decisions for the patient. The list for the State of Florida is in Table 1. Surrogate decision makers fall under the legal standard of substituted judgment, and therefore they must comply with durable power of attorney or other advanced directives. When these documents are not available, the “best interest” standard should be followed, in which the designated decision maker makes a decision that he or she believes is in the best interest of the patient.

TABLE 1 WHO IS THE DECISION MAKER?

▪	Competent patient	▪	Proxy list:
▪	Patient-appointed surrogate (when decisional capacity is impaired)		1.	Court appointed guardian
			2.	Spouse
			3.	Adult child or majority
			4.	Parent
			5.	Adult sibling or majority
			6.	Relatives
			7.	Close friend of the patient
			8.	Licensed clinical social worker (LCSW) not employed by the provider
Florida Statute 765 – Health Care Advance Directives

A brief mention should be made of the concept of medical futility. It is difficult, if not impossible, to codify a definition of medical futility into a policy. As with art, people know what they mean when they use the term medical futility. However, since individuals’ definitions will vary widely, it is probably best to use the term in concert with the patient’s identified preferences. For one individual it may be a 10% chance of success and for another 1%. The concept is an ever-changing target as medicine advances. Today’s futility is tomorrow’s standard of care, literally.

As with other areas of health care ethics, there are a number of myths associated with the making of end-of-life decisions. Meisel et al.⁸ discussed the legal myths versus the realities of end-of-life issues (see Table 2). As with all legal issues, practitioners should review policies annually to ensure that they are aware of any changes in state laws.

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