Eliciting Individual Preferences About Death: Development of the End-of-Life Preferences Interview

Article Outline

• Abstract
• Introduction
• Methods
  • Phase 1: Literature Search Aimed at Identifying Relevant Issues and Items Generation
  • Phase 2: Examination of the Selected Topics and Generated Items by a Panel of Experts
  • Phase 3: Pretesting of Feasibility
• Results
  • Phase 1
  • Phase 2
  • Phase 3
• Discussion
• Conclusions
• Appendix 1. End-of-Life Preferences Interview
• Appendix 2. Profile of the Preferences of a Patient Completing the Interview
• References
• Copyright

Abstract 

The capability to make decisions about one's own dying and death is commonly considered a necessary component of a good death, but difficulties in communicating about imminent death have been documented. This paper attempts to describe the process of constructing an instrument to elicit individual preferences concerning dying, while respecting the patient's awareness, and to verify its applicability in a palliative care setting. The development of the End-of-Life Preferences Interview (ELPI) was performed through (a) a literature search aimed at identifying relevant issues; (b) examination by a panel of experts in the field of palliative care of the items generated; and (c) pretesting of feasibility on all eligible consecutive patients referred to three centers of palliative care during a two-month period. The final version of the ELPI consisted of two parts: The first level explores preferences about issues regarding the caregiving process, and the second level focuses on preparation for death. Each of the two parts is introduced by key questions aimed at allowing the patient to decide whether and when to stop exploring such sensitive matters. Among the 49 eligible patients (41%), the interview was proposed to only 13 of them (27%), and only one of them refused. The reasons for such a low compliance of physicians in proposing the ELPI were evaluated by a semi-structured interview and are herein discussed. The use of the ELPI in clinical practice can favor the passage to a greater consideration of the self-determination of the patient at the end of life, with due consideration of his or her cultural and emotional needs.

Key Words: End-of-life preferences, advance directives, communication

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Introduction 

The capacity to make decisions about one's own dying and death is commonly considered a necessary component of a good death.¹, ², ³ To have this capacity means being able to perform specific functions, to make real certain patterns of being and doing; it does not involve the idea of being normatively obliged toward those patterns of being and doing.⁴ So it is for self-determination in the dying process. Therefore, more than evaluating the quality of dying by means of the degrees of control of one's own death and dying, it should be important to enable people to express some preferences, even if these demonstrate the preference to trust physicians or informal caregivers for decision making at the end of life or to leave some decisions to physicians or caregivers while keeping other decisions for themselves. How can we reach such a deep understanding of each dying patient? How can we make him or her able to express (i.e., to realize and to communicate) preferences on the dying process and the related process of care?

There have been extensive research efforts on related topics. Serious limitations on information given to patients on prognosis and other aspects of the disease have been documented.⁵, ⁶, ⁷, ⁸ Learning how to break bad news has become a main topic in medical psychology.⁹ Difficulties in communicating about imminent death have been addressed,¹⁰ together with the possible benefits of talking with terminally ill patients and their caregivers about death.¹¹ Specific tools have been devised to help doctors assess patient needs during end-of-life care, attitudes toward end-of-life issues, perceptions of the quality of end-of-life care on the part of terminal patients, and the needs of caregivers.¹², ¹³, ¹⁴

Tools to communicate about preferences about dying are needed.¹¹ Wenrich et al.¹⁵ evidenced the importance of encouraging questions from dying patients and being sensitive to when patients are ready to talk about death.¹⁵ Steinhauser et al.¹⁶ stated that “time [of the clinical encounter with a terminally ill patient] may also be used more efficiently if providers have an a priori list of themes to touch on.” Their research suggests six thematic areas to be dealt with: physical symptoms, preparation of end of life, completion about one's life, clear decision making, being treated as a whole person, and contributing to others. Thomas et al.,¹⁷ while studying preferences about place of death, made us aware that such preferences are not something that exist “as a pure type, a clearly definable entity, that can be straightforwardly categorized and counted,” neither are they necessarily active choices, meaning that they can be a refusal of interventions. They rather take “the form of stronger or weaker leaning in one direction, qualified by speculations about how things might change with events.”

Culture is important in these end-of-life issues. The cultural context has evident repercussions on preferences regarding death, as well as the attitude of physicians about individual decisions about death and more generally about information on the incurability and expectations experienced by terminal patients.⁶, ¹⁸

In Italy, a legal instrument for advance directives awaits legislative recognition. These instruments have intrinsic limitations with respect to asking about one's preferences concerning the end of life, because it is completed outside of a context of cure for a disease, in a terminal phase, and because it focuses mainly on the decisions that influence the duration of life.

Instead, we propose a relational instrument that facilitates and stimulates communication on these aspects. Discussing preferences means to begin to create the psychological conditions that allow the patient to exert, if he or she wants, self-determination in a delicate phase of his or her own life. The physician should be ready to relate to these aspects with respect to the times and protection of the patient. The instrument described in this report is different from the various instruments to measure the quality of dying, which focus on the discrepancy between what is obtained and the preference expressed; they therefore use a retrospective approach and do not propose to directly affect clinical practice.

This paper describes the process of constructing an instrument (End-of-Life Preferences Interview, ELPI) that elicits individual preferences concerning dying, with due consideration of the patient's awareness, and of verifying its applicability in a palliative care setting.

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Methods 

The development of the ELPI was performed through the following phases: Phase 1, literature search aimed at identifying relevant issues and items generation; Phase 2, examination of the selected topics and generated items by a panel of experts; and Phase 3, pretesting of feasibility.

Phase 1: Literature Search Aimed at Identifying Relevant Issues and Items Generation 

An exploratory MEDLINE literature search was carried out using the strategy shown in Table 1, together with a hand search of the references reported in the relevant papers. This search was aimed at identifying the factors to be considered in the development of the ELPI. The factors that emerged were organized into six macro-areas and a number of subareas, as shown in Table 2, which also indicates the studies from which the areas contents were extracted. As most of these studies regard quality of death, we considered only those aspects on which terminal patients could express a preference. The questions were formulated by the authors, paying attention to maintaining an open relational style and to introducing every topic in a soft way (when possible). As the issues that emerged turned out to be not easily dealt with by patients, we chose a semistructured interview form because it could make it easier for the physician to propose such issues to the patient, and also help the patient in freely expressing his or her own preferences about the end of life.

Table 1. Medline Search^a of Papers Regarding End-of-Life Preferences

Table 2. Macroareas and Subareas Considered in Development of the Interview

First Level

Information/communication20, 21, 22

Involvement in medical and therapeutic decision making

Information on disease evolution

Symptom control and treatment1, 19, 20, 21, 22

Information about drugs and medication

Attitudes about unconventional treatments

Routes of drugs administration

Use of medical devices

Use of opioid drugs

Unbearable symptoms

Relational1, 19, 22

Care

Company

Second Level

Preparation for death1, 16, 19, 20, 21, 22, 23

Meaningful action and events

Important end-of-life issues

Level of consciousness

Place of death

Atmosphere around

Reactions of relatives and friends

Spiritual/transcendental1, 2, 16

Life after death

Fears

Meaning

Religion20, 21

Religious practices

Comfort by a religious clergy

Rituals

Faith support

The interview was divided in two parts (see Table 2) according to the expected level of difficulty encountered both by the patient and the physician. The first level explores preferences about issues regarding the caregiving process and does not directly concern death and dying, whereas the second level focuses on preparation for death. Each of the two parts are introduced by the following key questions, which were derived according to the clinical experience of the authors and are aimed at allowing the patient to decide whether and when to stop exploring such sensitive matters.

First-Level Key Question: “To adapt our therapy model to your personal needs, we need to know your preferences concerning some aspects that characterize our assistance. Do you wish to talk about them at this time?”

Second-Level Key Question: “Whenever your condition should worsen enough to expect a short expectation of life, would you want to know?” If yes, “Would you like to talk now about what would be important for you at the end of life?”

Phase 2: Examination of the Selected Topics and Generated Items by a Panel of Experts 

The first preliminary version of the ELPI was examined by 13 experts in the field of palliative care (six physicians, three nurses, one physiotherapist, two psychologists, one anthropologist). They were interviewed by the researchers through semistructured interviews about: usefulness, applicability, text comprehensibility, adequacy of the response options, exhaustiveness of the areas covered, and redundancy of the items. The experts were asked to rate all the previous items on a 0–10 numerical scale. Based on the comments gathered, the ELPI scheme and wording of the items were revised and a new version was obtained.

Phase 3: Pretesting of Feasibility 

The new version (see Appendix 1) was tested on all eligible consecutive patients referred to three palliative care centers in central-northern Italy during a two-month period (January–February 2006). Two were home care centers only, whereas the third was an outpatient clinic with a home care service. Patients were considered eligible for interview administration if they had an expected prognosis of more than two weeks and less than six months, were older than 18 years, had no strong psychological defenses, had no severe cognitive impairment, and had no cultural resistance to deal with these issues. The criteria were evaluated by the physician according to the information available from the relationship with the patient. An operational manual containing instructions for the ELPI administration was provided for the participating physicians.

Feasibility was evaluated in terms of percentage of eligible patients out of the total number of consecutive patients referred to the three palliative care centers who were proposed to be interviewed, who accepted the interview and completed the first level, and who completed both the first and the second level of the interview. Data regarding the number of occasions and the time needed to complete the interview also were collected. A profile of the preferences of a patient completing the interview is presented.

To better understand potential difficulties and advantages from application of the instrument in clinical practice, the physicians involved in Phase 3 were interviewed. The following questions were asked: (a) What were the main patient-related factors considered in the decision to propose the interview (except the eligibility criteria)? (b) What were the main patient-related factors considered in the decision not to propose the interview (except the eligibility criteria)? (c) On a 0–10 scale, how at ease do you usually feel when discussing such topics with the patient? (d) What were the major difficulties in proposing the questions to the patient (both at the first and at the second level)? and (e) What was the patient's attitude during the interview (both at the first and at the second level)? A qualitative examination of the interviews was then performed.

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Results 

Phase 1 

The results are presented in the Methods section.

Phase 2 

The first version of the interview examined by the 13 experts was judged to be of a high quality as regards comprehensibility, usefulness, exhaustiveness, and adequacy of the response options, and had a low level of redundancy (Table 3). The interview was deemed useful by the experts “as it can be an operational aid to facilitate communication and relationship with the patient” and “information gathered can also be shared with the whole team.” The only aspects judged as challenging concerned interview applicability, which was considered difficult. Conditions deemed important for application of the interview were the following: patient awareness about their prognosis/terminality, a strong relationship between the interviewer and the patient, the fact that the interviewer felt at ease in facing the issues, an adequate setting and sufficient time to complete the interview, and the fact that the patient was able to face these issues and at ease in facing them. Observations regarding comprehensibility of specific items or the wording of response options were taken into account and the needed modifications performed.

Table 3. Experts' Scoring of the Selected Topics of the First Version of the ELPI Measured on 0–10 Numerical Scales

Phase 3 

The applicability of the interview was tested on 120 consecutive patients referred to three physicians working in three palliative care centers in a two-month period (January–February 2006). According to Table 4, the percentage of eligible patients in the whole sample was 41%, with relevant differences among centers (from 10% up to 76%). The most common causes of ineligibility were strong psychological defenses and severe cognitive impairment, as evaluated by the physician. Again, there were very strong differences among centers regarding the distribution of all the criteria. Of the 49 eligible patients (Table 4), the physicians did not propose the interview to 36 (73%); reported reasons were organizational (i.e., unable to find the right moment to perform it; not enough time to spend for this activity).

Table 4. Eligibility and Causes of Ineligibility by Center for the Whole Sample

	Center 1	Center 2	Center 3	Total
Screened	42	28	50	120
Eligible	4 (10%)	7 (25%)	38 (76%)	49 (41%)
Compliance
Proposed interviews	1	7	5	13
Refusals	—	1	—	1
Completed to the first level only	—	6	2	8
Completed to the end	1	—	3	4
Causes of ineligibilitya
Expected prognosis less than two weeks or more than six months	8 (19%)	1 (3%)	2 (4%)	11 (9%)
Strong psychological defenses	25 (60%)	6 (21%)	3 (6%)	34 (28%)
Severe cognitive impairment	16 (38%)	14 (50%)	4 (8%)	34 (28%)
Cultural barriers to deal with these issues	8 (19%)	13 (46%)	7 (23%)	28 (23%)

Of the 13 patients who were proposed the interview, only one refused it and 12 accepted to be interviewed. Of these, four completed it and eight stopped at the first level (which did not concern death and dying). The time for a patient to complete only the first level ranged from 30 to 40minutes, whereas it ranged from 50 to 60minutes to complete the whole interview (one patient needed two occasions to complete the interview).

Table 5 reports the replies to the interview on the use of the ELPI of the three physicians who used it. These results give important suggestions to understand the wide variability in the percentages of eligible patients and completed interviews among the three centers. All the physicians pointed out that the condition necessary to propose the interview to the patient is his/her awareness about the prognosis. The physician of Center 3 did not consider psychological defenses as a factor of ineligibility. She used the filter questions of the questionnaire as a possibility given to the patients to decide whether and when to stop (unexpectedly, the patients did not stop and did not have any particularly intense emotional reaction). In Center 1, the interview was proposed only when the physician was sure that the patient would accept to go until the end (but at that point, he did not perceive the usefulness of the instrument). In Center 2, one patient refused the interview; for the other six patients, the physician, on the basis of the replies given at the first level, felt he could not propose the questions of the second level. However, all the physicians were comfortable (scores higher than 7) about confronting the proposed themes.

Table 5. Semistructured Interview Results from the Physicians Who Administered the ELPI

The way in which the ELPI was used by the physicians was also different. In fact, the operative manual left ample space for the possibility to adapt the modalities of administration of the questions to the communicative needs of the physician. Physician 1 applied the questions in a strict manner and arrived at the following conclusions: “The interview as it is now is too bureaucratic given the themes…” “It is difficult to respond to direct questions.” This physician found scarce applicability of the instrument. Physician 3 asked the questions in a colloquial tone: “I tried to use the interview as a stimulus for conversation,” transcribing the replies only after the patient had finished replying and noting in the margin many observations regarding the reactions or behavior of the patient during the interview.

The reactions of the patients documented by the three physicians were, however, always appropriate to the nature of the treated themes. In fact, the physicians described attitudes “of openness,” “extreme tranquility,” and “there were no intense emotional reactions, although the nonverbal was characterized by pauses, sighs and watery eyes. This did not prevent the patient from continuing and created with the patient a sort of complicity that remained even in successive visits” (Table 5).

Appendix 2 reports a profile of a sample patient aimed at illustrating what the outcome of such an instrument could be for the palliative care staff after completion of the interview. This profile was obtained by transcribing, in a narrative form, the answers to the interview and the observations annotated by interviewer.

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Discussion 

The main result of this study is the development of a tool aimed to elicit individual preferences concerning dying. According to the experts' opinion, the ELPI is comprehensive and exhaustive, and can give, if correctly applied, a complete picture of the preferences of the patient about end-of-life issues, as those given in Appendix 2. Talking with the patients about end-of-life preferences also can help the physician to develop a more empathic relationship based on a deeper comprehension of the experience the patient is living.

Nevertheless, the study revealed problems of applicability, in part expected, that we do not feel are strictly linked to the structure of the instrument but are instead due to the absence of conditions and fundamental relational requisites. Given these concerns, physicians and patients may be reluctant to confront the contents proposed by the instrument or talk about preferences at end of life.

The criticisms that emerged mainly concerned the fear of triggering intense emotional reactions in the patients. Other concerns related to the difficulty in finding the right moment and time necessary to confront the issue. A possible role in the difficulty in application could also be related to the decision to ask that administration of the ELPI be carried out by the physicians. Nurses and psychologists may have had better compliance, because they are more used to communicating with patients on these issues. Our decision was motivated by the fact that talking about these issues with the physician assumes for the patient a stronger significance, and by the fact that physicians are generally little inclined and little prepared to confront emotional and relational aspects of the therapy,²⁴ but cannot delegate completely the administration of these aspects to other professions.

The ELPI was not designed as an instrument of wide application in a population of patients undergoing palliative therapy. Rather, its use is to be limited to those patients who are aware of their terminality and who agree to discuss it with their physician. In constructing the instrument, the attitude of the authors was directed to identify criteria of eligibility to aid the physician in recognizing patients to whom it could be administered, and also to identify filter questions that help the patient to decide whether and when to confront the proposed themes. However, because the criteria of eligibility are not strictly objective, their application was left to the discretion of the physician. Based on his or her knowledge of the patient, the physician evaluates if strong psychological defenses, or cultural or cognitive difficulties are present. This resulted in a large enrollment variability among the three centers, but also made it possible to fully respect the different relational approaches of the physicians participating in the study.

Other discordances emerged concerning the discretion of the physicians in proposing the interview. A paternal type of attitude characterized two of the physicians, who in a certain sense, made the choice for their patients; on the contrary, the third physician, trusting the structure of the questionnaire, proposed the filter questions to the patients, leaving them the possibility to decide whether and when to stop. The variability observed in the way physicians adopted the interview could also have been conditioned by the different typology of the patients treated in the three centers participating in the study. Centers 1 and 2 manage patients exclusively in a home-care setting, whereas in Center 3, patients are also followed on an outpatient basis. The different applicability of the instrument in various settings of palliative care (at home, in a hospice, or in a hospital), and at different times of the caring process, will be the object of future studies. A further reason for variability could be due to the fact that the physicians were deliberately not trained for the ELPI use and the operational manual gave them broad indications about ELPI administration. In fact, the aim was to leave the physicians free to express their attitudes toward end-of-life preferences discussion to discover different potential approaches.

The results of this study are within the context of the intense inhibitory social pressure that these themes still present in Italy. Communication about poor prognosis is considered injurious to the right of the individual to cultivate until the end a hope of survival and of reintegration in the community.²⁵ The possible margins of decision on the different ways to face the end of one's own life are extremely limited.¹⁸ The practice of giving complete information on the diagnosis and on the prognosis in the oncologic field is still not common.⁶ The limited margins of applicability of the ELPI in palliative therapy (the most sensitive context in the theme of quality of dying) indicate not only a situation as it is, but also, in our opinion, the need for a change of attitude in the medical field with regard to the end of life, particularly in the Italian context. Comparison with application of the instrument in different cultural contexts would make it possible to verify the validity of this interpretation, as well as to refine the instrument.

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Conclusions 

Development of an instrument that respects the different processes of awareness of the patient represents a first step in confronting the communication between the physician and patient on the preferences about the end of life. It is important that the physician adapts the scheme of the interview to the relational needs of the patient, which may involve training specifically addressed to the use of the ELPI in clinical practice. Use of an instrument like the ELPI in clinical practice can favor the passage to a greater consideration of the self-determination of the patient at the end of life, with respect for the individual's cultural and emotional needs.

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Appendix 1. End-of-Life Preferences Interview 

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Appendix 2. Profile of the Preferences of a Patient Completing the Interview 

A 58-year-old woman, medium level of education, married and living with her husband; she worked in the field of fashion public relations and at present she enjoys painting. In March 2005, she was diagnosed with a head and neck cancer. In September 2005, she was admitted as an outpatient to a palliative care unit (third step of the WHO pain ladder—Karnofsky Performance Status of 90).

She accepts to be interviewed and declares to prefer to be involved, together with her husband, in all therapeutic choices; she wants to know the development of her disease “even if no active treatment was indicated: in that case, I could choose to resort to unconventional therapies.” She has always believed in unconventional therapies, although lately she has had some doubts. She detests needles, would accept subcutaneous or intravenous administration only if absolutely necessary.

She would accept a nasogastric probe or bladder catheter, but either one would give her a lot of trouble. She takes methadone. She does not hide some reserve about these “drugs” and is uncomfortable about taking it while around a lot of people. In any case, she appreciates the information given to her about the side effects and mechanisms of actions of the drugs. She is afraid of being suffocated: she has already experienced the sensation, also as a constrictive sense to the neck, which impedes swallowing.

In difficult moments, she wants to have only her husband near, whereas for assistance, she would prefer the presence of friends and, if necessary, of specialized personnel. If her condition should worsen enough to foresee a short life expectancy, she would want to know also because it would give her the possibility to believe it was not true, to discredit the news, and to seek other therapeutic possibilities. She says there are always possibilities or however one must always try to do something. However, she wants to talk about what could be important for her at the end of life.

She would like to cultivate her own spirituality, if necessary with a “spiritual father” type of figure. The patient is Christian in origin, and has experimented with Buddhist spirituality, which she has always cultivated. In particular, she began when she knew she had a cancer. She would like to be self-sufficient in the last phases of her life and, for example, be able to paint. When she had radiotherapy, she painted 33 Madonnas with child as ex voto.

She feels it is important before dying to be able to clear up any unsettled conflicts and would like to choose the moment in which to die: she could choose to go away, she doesn't know how her dear ones will react to that moment. She would like to be conscious at the time of death but does not have a place where she would like to die.

She believes in reincarnation. She believes it is very important to be able to talk about death, not only about one's own fears about it. For her, it is important to give a sense to one's own death: “there is a design of one's own life” that has a beginning and an end, so that the sense enters in the design. She does not want to give an explanation at all costs transcendental. “However, there is a design even if I don't know it.” She would like that her family members do not suffer by her death. She would like to leave them a happy memory. Her faith in this moment is helpful for her to go serenely and not to give a significance to life: “A person must find a significance before for her life.”

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