Figure
1 on the rightillustrates the decisive role of patient preferences in important
treatment decisions.
The goal of the health care team is to implement a plan of care that is expected to yield the best-possible outcomes for the patient. Especially in the elderly population, who have multifaceted problems, the usual "fix-it" model for determining treatments is inadequate. Instead, the patient's preferences and values should define the best outcomes. Good decision making requires characterizing the plans of care that could be implemented, describing their likely outcomes, and collaborating with the patient in evaluating the relative merits and choosing the plan of care. If a patient is unable to participate in this process, a surrogate decision maker should understand the array of possibilities and try to shape the care plan to comport with the patient's values.
Optimal medical decision making obliges the health care provider to implement for each patient a plan of care expected to provide the best-possible future for the patient, as judged from the patient's perspective. This outcomes-oriented decision-making process is applicable to any treatment decision, whether related to life-sustaining treatment or chronic care and whether trivial or significant.
The outcomes model of decision making is often referred to as "collaborative" or "shared" decision making. It stands in contrast to the traditional "fix-it" model, which is based on an acute situation in which, with proper treatment, the patient can quickly return to health. When a medical problem is chronic and multifaceted--almost always the case in care of the aging and the dying --the available interventions are only partially effective, have some undesirable attributes, and require a more encompassing approach to decision making.
Typically, the fix-it model defines the practitioner's task as identifying a diagnosis, which leads to a single recommendation. Instead, the health care provider should characterize likely outcomes over the patient's lifetime, estimating their likelihood, length, and nature. The tendency is to focus quickly on the measured physiologic abnormality and how to fix it. When alternative approaches to health care affect the patient's quality of life, the health care provider must try to understand the implications and share them with the patient.
The outmoded fix-it model has the following characteristics. The patient has a health abnormality (some dysfunction, either physiological or psychological) that needs "Fixing," in order to restore normalcy as much as possible. Informed consent (which can be viewed within this model as an annoying legal requirement) requires the practitioner to present the essential facts of the medical situation, make a recommendation, and allow the patient to grant or deny consent. The possibilities are bifurcated into either agreeing to or refusing the recommended treatment. Informed consent within this model is understood as follows: 1) it is an event; 2) it occurs on one occasion; 3) the practitioner informs the patient; 4) (usually) the practitioner recommends one procedure and offers no, or less desirable alternatives; and 5) (usually) the practitioner does not seek to understand the patient's values. For incompetent patients, decisions are based on those established as standard, with little individualization in accord with known preferences and interests. A high priority is to prevent death whenever possible (except, in some cases, when the patient is suffering greatly and death can be delayed only for a short time)?
To make better decisions, the provider must first consider the array of possible plans of care, characterize the likely outcomes for each, and eliminate those that cannot be implemented. The result will usually be a few alternative plans of care, only one of which can be followed. The patient's experiences and preferences will probably affect the evaluation of each plan of care. People vary greatly in such adverse experiences as pain, disability, limited survival, cost, family problems, and indignities of care. The patient (or a surrogate) must be allowed to choose how to live, given the options.
Consider an elderly patient faced with a new diagnosis of lung cancer. He
or she would have the treatment option of pursuing chemotherapy and/or radiation
therapy including multiple hospital visits, possible side effects, and probable
sacrifice of the near-term quality of life. Or the patient may defer treatment
in exchange for the opportunity to maintain some independence from the health
care system, take care of unfinished business, and get his or her affairs in
order, before making further decisions to seek palliative care. The right-hand
branch of the decision tree diagrammed in Figure
1 on the rightillustrates the decisive role of patient preferences in important
treatment decisions.
Patients have a right to make important decisions that affect the course of their lives. Individual patients evaluate the benefit or burden of treatment from their own perspective and on the basis of their experiences. For example, a patient suffering greatly may prefer to forgo a treatment that could delay death. If the patient decides that the burdens of treatment are far greater than the benefit, then withholding or withdrawing the treatment is justified. If a treatment has become futile in that it cannot be expected to provide any benefit, there is no obligation to offer that treatment. For a cancer patient who cannot swallow and wants only to be comfortable, withholding artificial nutrition and hydration might be justified if tube feeding would be annoying and offer no benefits and if dying without tubes would be more comfortable. For a patient who is in the intensive care unit on ventilator and pressor support, and has no real likelihood of recovery, withdrawing life-sustaining treatment may also be the best plan of care.
The most important element of making decisions in collaboration with patients is effective and supportive communication. Often patients need to explore their understanding, their responses, and their preferences with a knowledgeable clinician in order to participate actively in shaping their own care plans. For example, clinicians can assist patients coming to terms with their prognoses by discussing the option of withdrawal of treatment in a hypothetical manner: "Can you think of things that might make you want to stop your current treatment?" Likewise, plans for a surrogate can be initiated with this kind of question: "If we needed to talk with someone about your care in an emergency, who knows you best and could speak for what you might want?" Presented as back-up plans or contingencies, these efforts respect the patient's current beliefs, anticipate unexpected events, and promote further conversations. For some patients, more direct questions are appropriate: "When your time comes, what do you hope that dying will be like?" "When you look at your future, what is the best that you could reasonably hope for, and what is the worst that you think might happen?" "What have you heard has happened to patients with conditions like yours, and which seem especially welcome or important to avoid?"
When health care professionals and patients avoid or delay discussions about the patient's views of life-sustaining treatment, patients ordinarily lose their say- decision making may be much more inefficient or insensitive, and courts and lawyers may end up in control. Research indicates that the majority of patients want to discuss these issues with their health care providers and that many prefer an earlier death over the life that might confront them. [3-6] Studies also indicate that decision making is often delayed so long that patients become too sick to be able to participate.[7,8]
Discussions for planning care should start with the patient's preferences about his or her future. The patient's priorities, concerns, and questions must take precedence in the discussion, as the patient comes to understand the situation. The physician and other care providers should outline potential effects of treatment on prognosis, functional status, and other possible outcomes. When the practitioner is asked, "What would you do if you were in my shoes?" usually the patient is asking for support in finding his or her own deeply felt convictions. This counseling requires two-way communication and an astute, sensitive listener.
Each patient's preferences are evaluated and discussions are carried through with as much continuity as possible. Whenever possible, the same physician, nurse, social worker, or chaplain should engage in these discussions. Patients and families frequently change their decisions as the patient's status fluctuates or as family dynamics change. The care provider needs to be sensitive to changes and maintain a steadying influence.
Dr Richard Connelly, director of the Intermountain West Geriatric Education Center, has a set of recommendations for providers to ensure fuller patient participation in communication as described by Deutsch. [9] He suggests:
Recording the key elements of advance conversations with a patient about accepting or refusing life-sustaining treatment may be possible and certainly helps in making difficult decisions later. Formal documents, such as durable powers of attorney and living wills, should not replace documenting a patient's preferences in the medical record; nor should they detract from the need to readdress issues in the light of changing patient circumstances. The formal documents can be effective in precipitating discussion, naming a proxy, giving specific guidance in a few cases, and assuaging anxiety and guilt for family and patient. These documents have authority by statute in most states, if they comply with certain procedural requirements, such as witnessing. Because the question of who can make decisions for an incompetent adult can become quite a legal tangle, the opportunity to name a proxy can be important, especially for patients who do not have an obvious, available, and appropriate close family member. However, living wills do not commonly serve to determine decisions.
It is difficult, if not impossible, to anticipate every possible scenario a patient may face in making end-of-life treatment decisions. Each decision warrants reevaluation and clarification with the patient and/or family before being implemented. Those working most closely with the family are often the first to recognize that timing is important in end-of-life decisions. The time to reconsider decisions may arise when the patient becomes increasingly debilitated and no longer responds to treatment, even though the patient may not be able to articulate that the treatment has become very burdensome. As in any assessment process, the need for reevaluation is ongoing, and the need for new decisions must be addressed whenever the patient's condition changes.
When the patient lacks the capacity to make decisions, family members should be involved in the process and are expected to represent the wishes of the patient. This expectation is built on the premise that a family member or surrogate is in the best position to know the patient's values, life choices, and stated preferences and is able to determine what the patient would have decided if he or she were still able to do so. If possible, patients should still be included in discussions pertinent to the decision, as they may be able to understand some of the conversation and may be able to express preferences. This effort respects the patient, despite his or her lost or limited decision-making capacity. If patients can understand their medical condition and the effects of alternative plans of care, they are legally competent to make their own medical decisions [10].
The decision-making process often reflects the idea that most people value their networks of friends and family and want to serve those interests, as well as their own. Thus, a patient worried about impoverishing a spouse should not be admonished to ignore this consideration. Almost anything that is important to the patient is a legitimate consideration in making decisions about how to live and thereby what plan of care to accept.
Decisions to use or forego life-sustaining treatment rarely take place in isolation. Physicians, nurses, social workers, clergy, patients, and their loved ones all may be involved with some aspect of the decision process. With so many players, the roles and responsibilities may become blurred: Who has input? Who must implement the decision? Who has the final responsibility to make the decision? These questions provide a good opportunity to practice collaboratively with physicians and other involved members of the health care team; each task is assigned to the team member best suited to carry it through.
How roles are divided among care-giving team members may also depend on past practice, as patient-care provider relationships are tremendously diverse. Some patients and professionals have a long-standing relationship before they confront a decision about life-sustaining treatment. These practitioners have a clear understanding of their patients' preferences and values, based on ongoing discussions about values and on former treatment decisions. Other patients and care providers may be meeting for the first time and need to establish rapport and trust. The family may or may not be present or willing to play an attentive or active role in decision making. Professionals offer recommendations based on possible outcomes, and patients bring their values to this process. When a patient is unable to make treatment decisions, a natural surrogate decision maker may emerge from the family, or the patient may have named someone in advance. Both approaches allow decision making to proceed smoothly. If there is no readily identified surrogate, decisions may be greatly delayed.
When to consider a patient incompetent for decision making may be influenced by many factors such as medical history, mental status, ability to communicate effectively, and cognitive abilities. A patient who is sedated, intubated, and on the respirator is unable to participate and is temporarily incompetent. A patient with progressive Alzheimer's disease, who no longer recognizes family and friends and is not oriented to time and place, is incompetent to make all significant decisions. The most common origins of inadequate decision-making competence are immaturity, barriers to communication (e.g., language deficits or reduced consciousness), barriers to understanding (e.g., inadequate time in emergencies, information too complex or frightening for the patient to confront), barriers to reasoning (e.g., fixed erroneous beliefs as in psychotic or severe denial states), or inability to make and express a consistent choice [11].
A determination of incompetence must be specific to the demands of the situation, so that a moderately demented patient, for example, might still be expected to choose activities or roommates. Likewise, this determination cannot rest on the novelty of a patient's choice. For example, the patient who turns down dialysis might well be competent. When a patient is deemed incompetent, decisions are most commonly delegated to the closest family members. Patient preferences articulated in the past, whether written into a formal document or just given orally, should shape surrogate decision making. If such guidance is not available, the family is charged with the task of making the decision based on what the patient would have chosen.
One of the most challenging situations of medical decision making arises when there is no available, willing surrogate and the patient does not have the capacity to make decisions. There is no consensus on how to find an attentive surrogate. Practitioners must remember that more vigorous investigations often uncover a suitable surrogate-perhaps a family member, friend, or care provider to whom the patient may have articulated preferences. Until public policy establishes guidance for these situations, we are left with decision making by care providers or ethics committees (which are not clearly sanctioned approaches), or petitioning the courts (which can be very time-consuming, costly, and sometimes arbitrary).
Once a decision is made, it should be clearly documented by a care provider who took part in the process. Progress notes should be clear and timely. When a life-sustaining treatment is foregone and death is imminent, the health care team has an obligation to provide for symptom control and emotional support. Forgoing one life-sustaining treatment is compatible with maximal therapeutic care of other types. Such care may include a wide variety of measures, from pain control to skin care, from oral hygiene to providing a sympathetic ear. There is a need for continual communication among the health care team, patient, surrogate, and other support personnel. Not only does tiffs yield better decisions, but it also relieves stress and provides support for one another.
Nurses are ordinarily in a position to improve decision making within their practice areas. In an outpatient setting, nurses can begin eliciting and recording patient preferences in preparation for eventual downturns in function and expected survival. Advance directives (living wills and durable powers of attorney) may be a vehicle for raising these issues and promoting dialogue with the patient and within the patient's family. Informational brochures and sample documents are valuable resources that could be made available to patients and staff alike. Because much of the important work takes little time and no other resources, much can be accomplished while attending to other tasks, even in very busy settings. Recently, the development of interactive video disc technology has been introduced as a novel way to assist patients in many types of decision making including advance directives.
In the inpatient setting, nurses are in a good position to elicit and record patient preferences directly, engage in active dialogue with physicians, participate in daily work rounds or teaching rounds, promote family dialogue, initiate team meetings, and model an effective role in decision making for other members of the health care team. These initiatives can be incorporated into practices of individuals, units, or institutions. In addition to practicing optimal decision making personally, a nurse can be effective as an agent of change, aiming to ensure that the system as a whole supports good practices. Some creative strategies might include the following:
In conclusion, current practice should incorporate a comprehensive health care plan that seeks to define:
This is clearly a shift from the "fix-it" model, which focused on an acute problem that could readily be diagnosed and that almost always would be treated in a predetermined way.
As health care providers, nurses have multiple opportunities to participate in collaborative decision making with patients. They can elicit patient preferences while providing direct care. As a member of the health care team, a nurse can be a patient advocate by communicating directly with physicians and other colleagues. As educators, nurses can continue to teach students, peers, and physicians a collaborative approach to decision making.
1. Patient Self-Determination Act. In: The Omnibus Budget Reconciliation Act of 1990, LP 101-508, Sections 4206, 4751, enacted November 5, 1990.
2. Lynn J, Degrazia D. An outcomes model medical decision making. Theor Med. 1991;12:325-343.
3. Wagner A. Cardiopulmonary resuscitation in the aged: a prospective survey. N Engl J Med. 1984; 310:1129-1130.
4. Bortz WM. The trajectory of dying: functional status in the last year of life, J Am Geriatr Soy. 1990;38:146-149.
5. Danis M, Patrick DL, Southerland LI, et al. Patients' and families' preferences in medical intensive care. JAMA. 1988;260:797-802.
6. Wetle T, Levkoff S, Cwikel J, et al. Nursing home resident participation in medical decisions: perceptions and preferences. Gerontologist. 1988;28(suppl):32-38.
7. Bedell SE, Pelle 1), Maher PL., et al. Do-not--resuscitate orders for critically ill patients in the hospital: how are they used and what is their impact? JAMA. 1986;256:2233-2237.
8. Lynn J, Teno J, Wenget N, et al. "Do not resuscitate orders" in seriously ill patients: expressed preferences or last rites? Clin Res. 1992;40:347a.
9. Deutsch C. What is decision-making capacity? In: Decisions Near the End Life. vol 6. Newton, Mass: 'The Education Development Center; 1991:12-13.
10. Brown RN. Legal counsel for the elderly. In: Dorsen N, ed. The Rights of Older Persons, A Basic Guide to the Legal Rights of Older Persons Under Current Law. Carbondale, 111: Southern Illinois University Press; 1989:375.
11. Brock DW, l.ynn J. The competent patient who decides not to take nutrition and hydration. In: Lynn J, ed. By No Extraordinary Means: The Choice to Forgo Life-Sustaining Food and Wetter. Bloomington, Ind: Indiana University Press; 1989:203.