Frequently, there is no formal structure in health care facilities to involve nurses or to ensure that patients understand their rights in formulating advance directives for health care. Because of the nature of nursing, nurses are the appropriate individuals to guide patients concerning advance directives (Gill, 1993; Husted & Husted, 1995).
The needs of a particular group of people are best known and expressed by the people themselves. Literature supports the importance of involving consumers rather than having the traditional "professional expert" develop any content and presentation in isolation from the consumers who will use the information (Bell, Damrosch, & Lenz, 1994; Keane, Chastain, & Rudisill, 1987; Merigan, 1990).
Many individuals want to control their own destiny. To this end, most health care professionals accept the assumption that decisions should be made on the basis of each person's values, not on the basis oí a nurse's or any other health professional's personal values (Husted & Husted, 1993). This, however, becomes problematic when patients are unable to express their values and wants at critical times. For this reason, the federal government enacted the Patient Self-Determination Act (Patient Self-Determination Act P5SDA]-OmUIbUs Reconciliation Act, 1990).
Primarily, the PSDA requires health care providers to advise patients of their rights to refuse medical care and formulate advance directives. The expectation, as a result of the PSDA, was that awareness and discussion of the patient's rights would increase the number of people who prepare such informative documents. This expectation has yet to be realized. The literature reports that only 8% to 15% of the public have completed advance directives (Reich, 1995).
Bioethics, ethics as it relates to the health care professions, came into existence as an independent discipline around 1970. The central tenet of the bioethics movement has been to foster empowerment of the individual to remain self-determined. This is the ethical intent of the PSDA.
To this end, Husteds' Bioethical Decision Making theory can provide nurses with insight as to how to ensure that the highest probability of a person's right to self-determination is being met (Husted & Husted, 1995). According to Husted and Husted (1985), the first step in ethical interaction between nurse and patient is the agreement between them. This agreement, while implicit at first, is vital to any interaction that occurs. The bioethical standards of autonomy, freedom, veracity (objectivity), privacy, beneficence, and fidelity are the presuppositions of this agreement and direct the ethical interactions between the nurse and the patient (Husted & Husted, 1995).
A review of the literature is organized into six major content areas:
*Attempts to increase the number of people developing advance directives.
*Barriers to the creation of advance directives.
* Problems with implementing advance directives.
*Recognition of consumers as experts.
*Problems with educational materials.
*Need for educational materials specifically designed for the elderly.
Attempts to Increase the Number of People Developing Advance Directives
Two studies demonstrate the difficulty in trying to increase the number of people drafting advance directives. In the first study, 148 elderly outpatients were informed verbally and in writing about advance directives and were provided with the forms. In a 3-month follow up, only 12% of the patients actually completed the forms within a 1-year period (Sachs, Stocking, & Miles, 1991).
The other study involved 60 Outpatient Department well patients who were only given written information about advance directives; they also received a reminder card in 3 months. No one completed a living will (Hare & Nelson, 1991). In comparing the two studies, it appears that verbal communication slightly increased the numbers of people drafting advance directives.
Barriers to the Creation of Advance Directives
There have been a number of speculations regarding the reasons individuals are not making advance directives. Among them are: many people do not want to discuss endof-life matters; some people are confused about developing the forms; often there are language barriers; and there is fear about the quality of treatment if they have advance directives. (Evans & Clarke, 1993; Howe, 1993; Rein, Harshman, Frick, Phillips, Lewis, & Nolan, 1996; Sachs, 1993).
Problems with Implementing Advance Directives
People do not always mean what they say; they do not always say what they want; and they do not always want what they say they want. That much is, if not exactly clear, at least uncontroversial. What is controversial is, recognizing this, how to proceed. How are we to interpret statements made by a patient who is now, by virtue of his medical condition, unable to interpret them for us? (Elliott, 1992, p. 61).
Disagreement between patients' wishes and those of the surrogates can create insurmountable barriers to the effective implementation of the directive (Beland & Froman, 1995). Keeping the advance directive up-to-date may be a cumbersome "chore" for patients. Integrating last-minute wishes of the patient or adjusting language to accommodate medical and technological advances may be easily overlooked or delayed (Rein et al., 1996).
The desire for unrealistic or futile care on the part of the family or even the patient can create difficulties in making health care decisions (Caralis, Davis, Wright, & Marcial, 1993; Emanuel, 1993; Howe, 1993).
Recognition of Consumers as Experts
Clients' personal experiences with illness or distress often confer on them a unique expertise, endowing them, as 'insiders,' with special knowledge and insight that cannot be obtained in any other way. Nurses, psychologists, and investigators in other fields are increasingly recognizing the validity of the insider perspective.... (Bell, et al., 1994, p. 198).
Consequently, a new word, "prosumer," has been coined. Prosumer refers to a person who not only provides a service but is the consumer of that service (Borkman, 1990).
One way researchers can tap into the clients' perspectives is to use them, literally, as consultants and collaborators in the early data collection, planning, and subsequent stages of research (Bell et al., 1994). This broadens the use of the prosumer as described in other literature (Damrosch & Lenz, 1984; Damrosch, Lenz, & Perry, 1985; Kingry, Tiedje, & Friedman, 1990).
Problems With Educational Materials
One of the major problems with printed material is that it often is printed at too high a reading level of comprehension for the average adult (Bernier, 1993; Dusch, 1993; Meade, Diekmann, & Thornhill, 1992). A second problem is that input is not sought from the people using the materials.
Other problems that need to be addressed are print style and size, space between lines of text, use of illustrations, and color and paper texture (Adler, 1993; Bernier, 1993). Printed material should motivate one to learn. To this end, the material needs to be presented in a way that targets a particular authence and makes clear the material's relevance for them (Allensworth & Luther, 1986; McCabe, 1989).
Need for Educational Materials Specifically Designed for the Elderly
Many older people did not have the educational opportunities that are available today; therefore, many have not completed high school. This, along with the normal problems of aging, such as decreased vision, increases the problems of gaining comprehension from printed materials (Ebersole & Hess, 1994; Weinrich & Boyd, 1992). Further, the elderly are most likely to be in need of advance planning for end-of-life decisions (Jack, Stocking, & Miles, 1992). Therefore, it is important to have printed information on advance directives that the elderly are able to read and comprehend.
Through the use of appropriate teaching tools, the increase in learning may be significantly heightened. Unfortunately, written materials are frequently not adapted to accommodate the changes of the normal aging process, and the reader's comprehension of the material suffers (Ebersole & Hess, 1994).
Institutional Review Board approval, as well as permission from the appropriate people at the independent Irving sites, was granted prior to data collections.
The subjects for the study were a purposive sample of well elderly people from two independent living sites. It was a purposive sample because the subjects were selected because of the information they can share. The well elderly people were defined as people 65 years of age and older who were well enough to function in independent housing. Two residential sites were accessed and represented two distinct residential dwellings, one private and one federally funded. Criteria for the sample included the person's ability to speak English and orientation to time, place, and person. All well elderly people who live at the sites were asked to volunteer. Every attempt was made to include both genders and a cross section of ethnic and racial groups.
Focus groups have been recognized as an effective way of gathering data directly from the people involved. This technique is extremely useful in accomplishing needs assessments, closing the gap between professionals and the public, and discovering what information consumers consider when making decisions (Gray-Vickrey, 1993; Kleinpell & Powers, 1992; Krueger, 1994.) Focus groups produce qualitative data that provides insight into the attitudes, perceptions, and opinions of participants. Further, there is no pressure by the moderator to have the group reach consensus. Instead, attention is placed on understanding the thought processes used by participants as they consider the issues of discussion (Krueger, 1994).
1. What do well-elderly people know about advance directives and their rights regarding end-of-life decisions?
2. What do well-elderly people state they need to know about advance directives and their rights regarding end-of-life decisions?
3. What characteristics of a printed brochure attract well-elderly people and enhance their understanding of the information?
Six focus groups were used. The total sample was 26, 4 males and 22 females. This was a sufficient number to achieve saturation of data.
The six interviewers, trained by the principal investigator, asked open-ended questions and facilitated the discussion. All sessions were audio taped. The tapes were erased as soon as the data were retrieved.
Participants were asked what they knew about advance directives. Then, they were asked what they would like to know about advance directives and end-of-life decisions.
Next, they were asked to go to a table displaying 10 brochures (the brochures were numbered) with varying characteristics (e.g., size, color, texture) and select the one that most appealed to them. The interviewer elicited from all participants why they selected a particular brochure. Further discussion followed concerning what each participant found appealing about the various brochures.
Out of the sample of 26, 10 reported having an advance directive. Of these 10, 9 were from the private residential site.
Self-Report of What They Knew (Research Question 1)
Although nine participants had some form of an advance directive, they reported knowing very little about them. Although more of the participants were familiar with the term "living will" than "advance directives," they all knew that the living will was a means to have their wishes made known regarding endof-life issues. Confusion existed among all participants regarding durable power of attorney for health care. They were confused with a power of attorney for financial matters versus a power of attorney for health care.
Self-Report of What They Wanted to Know (Research Question 2)
Many questions were asked by the participants. The following summarizes their questions:
* Where can an advance directive form be obtained?
Participants were surprised to learn that the forms are readily available at numerous places, such as their physicians* offices.
* Who should have a copy of the form?
Participants did not realize that their physicians needed to have a copy and any family member or significant other to whom they had given or would give decision making power also needed a copy.
* Where should the form be kept?
This question implied there would be one copy only. They needed to know that many copies are advisable. Most believed that the best place to keep it was in their safety deposit boxes, not realizing that no one could access it in time of need if this were the only copy available. As stated above, many people should have a copy. The copy kept at home should be easily located. Also, they were advised to carry a card in their wallets signifying that they have an advance directive and where it can be found. These cards were provided to them at the time of the interviews.
* Is it valid in other states?
It is important to know the laws concerning advance directives in states visited frequently because not all states offer reciprocity.
* Will doctors follow patients' wishes?
Participants were surprised to find that their advance directives would not be initiated unless they met certain medical criteria, e.g., terminal illness. Physicians are legally as well as ethically obligated to follow patients' wishes when they meet this criterion.
* What happens if their children dispute the advance directive?
This can result in the directives not being followed. This points out the importance of discussing the directive ahead of time and gaining consent for its contents.
* What if they change their mind?
This is not a problem. Changes in the documents can be made easily. Wishes about changes can be made verbally, but the changes must be recorded appropriately.
* Can they choose what they want done or not done or is it "all" or "nothing?"
Choices may be made. It may be specified that particular treatments be tried, but that if they do not work in a reasonable time frame, they are to be discontinued.
* Is a lawyer needed?
No; however, the form should be notarized or witnessed by two persons who do not inherit from the estate.
While not all the questions were asked by all the participants, most of the people indicated that they did not know this information and would like to know it.
Characteristics of the Brochure Selected (Research Question 3)
Results of focus group interviews revealed very individualized preferences regarding the visual presentation of the brochures. Some preferred smaller brochures because "we don't have a lot of storage space" and "why use something big if you can get the same information in something small and concise." Others preferred the larger brochures stating the "print was easier to read" and that it was "something that wouldn't be easily misplaced."
Muted, pale colors, such as green, gray, and beige, were preferred for background paper. Clear, bold black or burgundy print was preferred because of the contrast it made with the muted background colors. Print styles without finishing strokes (such as sans serif) were preferred by most participants because they were "easier to read." Matte paper quality was chosen over shiny paper because of easier readability. Also, several participants stated "we all have problems with our eyes." The consensus was visual presentations that were not overly "busy" were easier to read.
Certain words in the titles of the brochures were appealing to many participants. Some of the words that held their attention were "A guide to..." because they wanted something to guide them. Also the words "need to know" drew attention because they needed to know about advance directives. Other headings that were specifically commented on by participants included, "understanding," "medical treatment," "health choices," "legal documents," "make decisions that need to be made," and "decide for yourself."
Artwork on the brochures was commented on favorably by some participants and unfavorably by others. Of the participants who liked artwork on the brochures, the images chosen were caricatures of women (this was perceived as "someone doing good"), scales of justice (because it represented balance and honesty), a tree (because it represented peace, serenity, and everlasting life), and a pen (because it "had an authoritative look"). One participant specifically commented on the artwork. She did not like a caduceus because it reminded her of a snake. Another participant disliked any brochure with multiple visuals because they looked "too busy and distracting."
Conclusions drawn from the focus group participants regarding the brochures were that size and use of artwork were so individual that no one format would be pleasing to all. However, there seems to be sufficient evidence to support the use of muted, quiet colors, nonshiny paper, bold and well-defined print, good contrast between the print and the paper, and "catchy headings to draw their attention to the information that follows."
Each site was offered the chance of having an educational session prepared for the participants and any other people who wished to attend. The private site declined because they periodically had a lawyer visit and conduct their educational sessions. This may account for the reason so many of them had a living will. However, it did not seem that the self-reported knowledge level was any higher among these participants. This, of course, is far from conclusive. Many times people are unwilling to talk in groups, even of this small size. Also, one may not express knowing something and still have knowledge of it.
During the educational session at the nonprivate site, many participants and nonparticipants in the study attended. All of the questions raised with the focus groups were asked, in addition to many others. It became obvious that no one knew the conditions under which an advance directive becomes activated. Most believed that once you said it, it was the case and did not depend on the condition (e.g., terminally ill, persistive vegetative state) and that this differed from state to state. They had many questions about the role of the proxy and the number of people who could be proxies. Many were confused about terminology. There ensued a debate among the participants themselves about whether they would ever want to be resuscitated. Some would never want it, saying they had lived their lives. Others said that if they could still enjoy their life, they would want it. This provided an opportunity to talk about the importance of letting someone know about such feelings and thoughts. Otherwise, a decision could not be made for them on the basis of their personal preferences.
A brochure, specific to well elderly persons, is being developed using the information gathered from this study and information from the literature regarding the development of educational materials for the elderly population. Such a brochure may have a higher probability of meeting the needs of this specific population.
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