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 Table of Contents  
ORIGINAL ARTICLE
Year : 2020  |  Volume : 7  |  Issue : 1  |  Page : 103-112

Decision-Making about the Place of Death for Cancer Patients: A Concept Analysis


Department of Nursing Science, Graduate School of Nursing, Osaka Medical College, Takatsuki, Osaka, Japan

Date of Submission28-Apr-2019
Date of Acceptance08-Jul-2019
Date of Web Publication05-Dec-2019

Correspondence Address:
MSN, RN, CNS Yoko Minamiguchi
Department of Nursing Science, Graduate School of Nursing, Osaka Medical College, Takatsuki, Osaka
Japan
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/apjon.apjon_38_19

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  Abstract 


Objective: The objective of the study was to conduct a concept analysis of “decision-making about the place of death for cancer patients” to develop a theoretical definition of the concept and identify its attributes, antecedents, and outcomes. Methods: The Rodgers' evolutionary model of concept analysis was used. A literature search for papers published from 2000 to 2017 was conducted using the keywords: “cancer,” “place,” “death,” and “decision-making” for the search of the electronic databases. Results: Thirty articles were selected for this analysis. As a result, five attributes, six antecedents, and five consequences were extracted. [options to choose as a place of death], [wishes of the patients themselves], [consideration of the burden on the family], [open discussions with other persons concerned], and [best choice according to circumstances] are considered to be the characteristics in the decision-making about the place of death for cancer patients. Conclusions: This concept is defined as “The best choice according to circumstances of the cancer patients among different options for a place of death, resulting from a careful evaluation of the wishes of these patients and the burden on the family, as well as through open discussions with other persons concerned.” Nurses need to assist patients discuss deaths with important others, such as family members, in making decisions about the place of death. Further studies are necessary to elucidate the details of the categories and relationships shown in the attributes in this study, investigating the actual conditions of the patients and their families.

Keywords: Cancer, concept analysis, decision-making, the place of death


How to cite this article:
Minamiguchi Y. Decision-Making about the Place of Death for Cancer Patients: A Concept Analysis. Asia Pac J Oncol Nurs 2020;7:103-12

How to cite this URL:
Minamiguchi Y. Decision-Making about the Place of Death for Cancer Patients: A Concept Analysis. Asia Pac J Oncol Nurs [serial online] 2020 [cited 2020 Jun 4];7:103-12. Available from: http://www.apjon.org/text.asp?2020/7/1/103/272416




  Introduction Top


The concept of decision-making is important to understand human behaviors and social phenomena, and it is used in various fields in the social sciences. In the medical field, with the development of treatment methods, patients have more options for tests and examinations, treatments, and places to die, and this has drawn attention to the decision-making of patients. Until the early 20th century, it was common to die at home, but since then places of deaths in hospitals have increased, further expanding to hospices and other facilities, and patients are being asked to make decisions about the place of death.

Many terminal stage cancer patients attach importance to “death at a preferred place.”[1],[2] Further, the agreement between the preferred place of death of the cancer patients and the place of eventual death has a positive effect on the quality of life of patients, as well as on the depression and grief of the bereaved.[3] For these reasons, it is important for cancer patients to make a decision of the place of death. However, previous studies have reported that cancer patients to experience mental conflicts in making decisions on the place of death,[4] and that there are cases where the preferred place of death does not coincide with the eventual place of death,[5] and it may be assumed that it is not easy for cancer patients to make a decision of the place of death.

Among previous studies,[6] performed a concept analysis on decision-making for the treatment of elderly cancer patients, and reported that “Patient decision-making refers to an ongoing process comprising complex cognitive, perceptional, affective, behavioral, and relational components by which individuals select an acceptable solution or a salient alternative concerning a health-related issue, influenced by interactions among individual and contextual factors, culminating in decisional outcomes, and postdecisional appraisals.” However, as it is reported that although the central player in decision-making about a place of death is the patients, such a decision will made be in relation to the family,[7],[8] some patients may entrust the decision to the family due to poor medical conditions. Further, patients are likely to suffer mentally from the burden of making the decision because they have to face death when making decisions of the place of death. In addition, as it is often difficult for medical professionals to estimate how the physical conditions of terminal stage cancer patients will change, patients and family are required to make decisions of the place of death under time constraints with the uncertainties of changes in physical conditions.[9],[10] Consequently, decision-making about the place of death is affected by a range of conditions such as how patients accept the physical conditions and death, the sense of value, relationship with the family, and cultural background and the medical system of the local community where the patients live.[8],[11] As described above, decision-making about the place of death for cancer patients is a concept that has complicating characteristics.[8],[12] At the same time, the situation of decisions of treatment is different from that of the place of death, and the conceptual characteristics of the decision-making about the place of death for cancer patients have not been established. For this reason, it is necessary to define the conceptual characteristics of the decision-making by limiting the particulars of the decision-making to the place of death.

To enable this, this study aims to define the concept of decision-making about a place of death by elucidating the conceptual structure from the attributes that define the concept, antecedents that show the events occurring prior to the concepts, and outcomes for when the concepts are realized.


  Methods Top


Concept analysis model

The study employed the concept analysis by Rodgers.[13] This method focuses on the changes in concepts over time and depend on situations and attempts to elucidate the characteristics of the concepts involved. The concept of decision-making about a place of death for cancer patients is influenced by changes over time, such as in medical and social conditions, views held by the individuals, and values related to death and life of patients, and also on cultural backgrounds. For this reason, we thought that this method based on the idea that concepts vary depending on the context characteristics, including time, culture, and ethnic background, would be suitable.

According to the steps of Rogers,[14] we performed analyses as follows: (1) Identify the concept and associated expressions (including surrogate terms); (2) Identify and select an appropriate realm (setting and sample) for data collection; (3) Collect data relevant to identify: (a) the attributes of the concept and (b) the contextual basis of the concept, including interdisciplinary, sociocultural, and temporal (antecedent and consequential occurrences) variations; (4) Analyze data regarding the above characteristics of the concept; (5) Identify an exemplar of the concept, if appropriate; and (6) Identify implications, hypotheses, and implications for further development of the concept.

Literature review

The concept of decision-making about a place of death for cancer patients has been used since early 2000. For this reason, we decided to search articles published between 2000 and 2017. We searched the Scopus, CINAHL Plus, MEDLINE, and Ichushi Web databases for original articles in medical, nursing, and psychological, and social science fields using the combinations of keywords “neoplasms OR oncology OR cancer,” “death OR end-of-life,” “place OR location OR site,” and “decision making,” and retrieved 400 articles for all the fields. Of these, we selected 20 articles from among the identified articles by excluding 334 articles that had no descriptions about the decision-making about a place of death, six articles that focused on childhood cancer patients and their parents, three articles focusing on noncancer patients, and one article focusing on cancer patients with developmental disorders, 27 case study reports, and nine articles addressed at only medical professionals. Adding ten articles from a manual search using commonly known literature and cited articles to the twenty, we reviewed thirty articles[7],[8],[9],[10],[11],[15],[16],[17],[18],[19],[20],[21],[22],[23],[24],[25],[26],[27],[28],[29],[30],[31],[32],[33],[34],[35],[36],[37],[38],[39] in total.

Data collection and analysis

We extracted attributes that show the nature of the concept, antecedents that show the events occurring prior to the concepts, and outcomes that show the events resulting from the occurrence of the concepts in a coding sheet. From the articles that focused on the families of cancer patients, descriptions concerning the situations of cancer patients were extracted. Dividing the descriptive data of antecedents, attributes, and outcomes into codes (one code per meaningful context), and evaluating similarities and dissimilarities of the codes, and classified the codes into subcategories and categories. Based on the results, we defined the concept of decision-making about a place of death for cancer patients and created a conceptual diagram structuring the relation of antecedents, attributes, and outcomes. To ensure the validity of the analysis, the entire process of the analysis was supervised by researchers specializing in oncology nursing.


  Results Top


Employing Rodgers' concept analysis approach, the attributes, antecedents, and outcomes shown in [Figure 1] were extracted as the concept of decision-making about a place of death for cancer patients. Categories are indicated with square brackets ([]) and subcategories with angular brackets (<>).
Figure 1: Decision-making about the place of death for cancer patients: Attributes, antecedents, and outcomes

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Attributes

Five categories and 15 subcategories were extracted as attributes to the decision-making about a place of death for cancer patients [Table 1].
Table 1: Attributes to decision-making about the place of death for cancer patients

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Options to choose as a place of death

As <Options to choose as a place to die>, “Hospital,” “Home,” and “Hospice” have been reported.[15],[16]

Wishes of patients themselves

This category includes the following subcategories: <Relief of pain symptoms>, including pain and anxiety,[8],[11],[17],[18],[19] availability of <Support for daily living> such as voiding assistance,[9],[10],[17]<Maintaining life as the patient wishes>[8],[9],[18],[20],[21],[22],[23],[24] such as wishing to stay at the present home,[8],[18],[20],[21],[24] and <Reliable family and medical professionals>[8],[18],[20],[21],[22],[24] such as wishing to stay with the family at home.[8],[20],[22],[24]

Consideration of the burden on the family

Cancer patients conducted <Assessment of care skills of the family>[9],[10],[21],[22] and were concerned about the burden on the family,[8],[9],[10],[11],[19],[21],[23],[24] wishing not to impose a burden on family members. Patients also gave consideration to the balance between their own wishes and the burden on the family, hoping that their wishes would be realized without imposing any serious burden on the family,[10],[11],[18] and trying to strengthen the relationship with the family while thinking that this may become a burden on the family.[11]

Open discussions with other persons concerned

In making decisions of a place of death, the cancer patients had an open discussion with important others, such as family members and medical professionals. In the discussion with family members, patients tried to <Confirm the wishes of the family members>[9],[18],[21],[25] and <Understand the feelings of both the patients and the family members>.[9],[24] In discussions with medical professionals, patients were given <Explanations and proposals of medical professionals>through discussion based on information provided by medical professionals[26] and engaged in <Sharing opinions with medical professionals> by confirming the differences in perceptions of life expectancy and place.[15],[24]

Best choice according to circumstances

Patients made <Choices according to circumstances>,[9],[10],[18],[27] such as selecting the best place considering the changes in disease conditions.[9],[10],[11],[18],[27],[28] However, many cases were faced with difficult choices.[28] Further, there are <Decisions that value the wishes of both of patients and family members>, as a result of patients thinking about the matters together with their family,[19] and selecting the best choice for both parties.[18] There are also <Decisions that value the wishes of patients>, where patients and family members decide to support the patient wishes[21] and that patients explain their ideas convincingly to the family members.[19]

Antecedents and outcomes

Six categories were extracted as antecedents for a place of death for cancer patients [Table 2].
Table 2: Antecedents for decision-making about the place of death for cancer patients

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Cancer patients were in the situation where they need to make decisions of a place of death due to [Worsening of the physical conditions of patients], such as <Situations where there is no response to invasive treatment>,[15],[29]<Declining physical functioning>,[24],[30] and <Appearance of pain symptoms>.[8],[10],[29],[30] A place of death was agreed on when the disease conditions coincided with an [Awareness of the patient on the disease conditions], such as <Understanding of that the disease condition is worsening>[9],[19],[23],[24] and <Acceptance of death>.[8],[16],[21],[23],[24] In cases where family members are involved in the decision-making about a place of death, patients made the decision when the disease conditions coincided with the [Awareness of the family about the disease condition and the place of death], such as <Understanding of the family about the disease condition>[24] and <Understanding of the family on a place of death>.[24],[31] It is reported that there is a tendency in cultures that patients have positive attitudes and determination[8],[11] and that the family plays an important role in decision-making.[7],[28] From this background, the [Intention of patients and family] for a place of death involves the following subcategories: <Attitudes toward the decision of patient and family>,[7],[28]<Experience of care which patients received in the past>,[10],[18],[22],[24]<Cultural and religious values of patients>,[7],[10]<Thoughts of the family hoping to support the wishes of the patients>,[10],[21],[24],[29],[30] and <Differences in the intentions of patients and family> related to the place of death and how the patient spends time till the end of life.[7],[17],[28],[29] As [Barriers to discussing death with others are concerned], there were situations where patients and family cannot talk openly due to the <Difficulty for the patient and family to talk about a place of death>.[9],[24],[28],[29] There were also situations where the decision-making did not proceed due to <Difficulty for the patient to talk about the disease conditions and death with medical professionals>[9],[10],[15],[16] as illustrated by the reports that it is difficult for patients to ask medical professionals about medical matters,[10],[16] and that medical professionals make the ideas of patients on death ambiguous.[9],[15] Further, as [Social resources available], <Characteristics of community>,[20],[25],[27],[32]<Nursing care services at home>,[9],[21],[28],[29],[33],[34]<Medical professionals patients can consult with>,[11],[35],[36] and <Support from the family>[9],[10],[17],[24],[27],[28],[29],[37] were extracted.

Five categories were extracted as outcomes of the decision-making about a place of death for cancer patients [Table 3]. [Realization of death in the preferred way] is illustrated by <Death at the place the patient preferred>[26],[38] and <Mental stability of patient>.[21],[24] With the time spent together by patient and their family members at home, patient [Maintained relationship with their family].[21],[30] [Satisfaction of the family][30],[37] is illustrated by the report that family members felt it accomplished by providing nursing care for the patient,[37] and [Regrets and self-accusation of the family] is illustrated by the report that the family felt regret and self-accusation because they did not look after the patient at home.[10] [Maintaining the mental health of family members][38],[39] was extracted from the report that the family became less depressed when the patient died at a place preferred.[38]
Table 3: Consequences of decision.making about the place of death for cancer patients

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Related concept

From the articles analyzed, “Advanced Care Planning” was extracted as a concept related to decision-making about a place of death. It was reported that through the advanced care planning, the preference of the place of death was discussed,[33] and the discussion for decision-making about the place of death continue till finalization of advanced care planning.[8] These suggest that advanced care planning is reflected in the decisions made for the place of death.

Example presented by a case

After undergoing treatment for 10 years, and with no treatment options left, Jane, a breast cancer patient aged 53, faced the necessity to make decisions on palliative and life-sustaining treatments. When Jane had to decide where she would spend the days left to her, she had <Options to choose as a place to die>: stay at home with undergoing hospice care and at special nursing care home or hospice. At the same time, she had to make a decision of life-sustaining treatments, including cardiopulmonary resuscitation and admission to the hospital or intensive care unit. Jane wanted to spend the final days as she wished, but she had [Wishes of patients themselves], such as hoping to live much longer and spend time with husband and daughters at home while giving [Consideration of to the burden on the family] because she will impose a burden on her husband and daughters who look after her. However, Jane thought that if she chooses hospice, she would not be able to live as she wishes and thinks about death more fully. The family of Jane hoped that she would receive the best care so that Jane's wishes would be granted. For this reason, Jane repeatedly had [Open discussions with other persons concerned], such as with husband, daughters, physicians, and nurses, and Jane made a decision to make the [Best choice according to circumstances], living in a hospice as the best place for Jane, while sharing the emotions and thoughts with her family.[12],[40]


  Discussion Top


Definition of concept

Based on the attributes, antecedents, and outcomes extracted in this study, we defined the decision-making about a place of death for cancer patients as “The best choice according to circumstances of the cancer patients among different options for a place of death, resulting from a careful evaluation of the wishes of these patients and the burden on the family, as well as through open discussions with other persons concerned.”

Characteristics of the concept

Here, we discuss the characteristics of the concept of decision-making about a place of death for cancer patients, focusing on the [Wishes of the patients themselves], [Consideration of the burden on the family], and [Open discussions with other persons concerned]. These are considered to be attributes characteristic to the decision-making about a place of death for cancer patients because they were characteristics not clearly reported in the previous studies that performed a concept analysis of decision-making.[6],[41]

Simon[42] mentions that options are evaluated and compared in decision-making. It may be inferred that the cancer patients evaluate and compare options of a place of death, and make a decision of a place based on their wishes, such as to have support for alleviation of pain symptoms and activities in daily living, to be able to live in ways they prefer, have family members and reliable medical professionals, and be less of a burden on the family. Miyashita et al.[43] report that the concept of a good death for cancer patients in the terminal stage includes “physical and mental afflictions being alleviated,” “staying in a quiet environment,” “keeping a good relationship with family and friends,” “having reliable physicians and nurses,” and “not imposing a burden on family and other people.” These were in common with the attitude of cancer patients in the terminal stage contemplating their own wishes and the burden on their families. This suggests that contemplating options of a place of death based on their own wishes and the burden on the family and making the decision may lead to a [Realization of death in the preferred way] and [Satisfaction of the family]. Therefore, it is important for nurses to discuss with patients to be able to understand what the patients place importance on in making the decision of a place of death. However, where it is difficult to balance the wishes of the patient and the elimination of the burden on the family, patients need assistance because such difficulty may affect [Regrets and self-accusation of family] and [Maintaining the mental health of the family members].

Further, when cancer patients in the terminal stage make decisions of a place of death, they conducted [Open discussions with other persons concerned], such as family members and medical professionals. This type of decision-making has to be performed in a situation with uncertainties of the outlook of the medical condition of the patient, difficulty in sharing the inevitability of death among the patient, family, and medical professionals in a short period of time. For this reason, it is indispensable for the three parties to discuss openly to enable the [Best choice according to circumstances]. As an antecedent [Barriers to discussing death with others concerned] was also found, it may be inferred that talking about death openly may be difficult. However, it is indispensable for the three parties to face and talk about the death of the patient and the sorrow arising at the death to ensure a [Best choice according to circumstances] and [Realization of death in the preferred way].

Review of applicability to practice

As the applicability of the findings to practice, we first discuss the details of antecedents and outcomes. Nurses can utilize the concepts extracted as antecedents for a viewpoint of assessments to assist cancer patients in the terminal stage in making the decision of a place of death. It was suggested that the decision-making about a place of death may need to be conducted repeatedly depending on the changes in physical conditions because it is related to the [Worsening of the physical conditions of patients]. Further, nurses need to assess how patient and family understand the disease conditions and how they think about death because decision-making about a place of death for cancer patients is related to the [Awareness of patients about the disease conditions] as well as the [Awareness of the family about the disease conditions]. If cancer patients and their families are not aware of the disease conditions, they may not be able to understand the necessity for making decision of a place of death, and there may be cases where patients and family are afraid of facing death.[44],[45] This makes it necessary for nurses to pay careful attention in encouraging patients to understand the disease conditions. For a [Realization of death in the preferred way] and a [Maintained relationship between patients and their family], extracted as outcomes can be used as an index when nurses evaluate the decision made by patients together with the patients. However, it is necessary to keep in mind that there will be cases where evaluation of patients is difficult due to the poor conditions of the patient and that the result of decisions by patients may affect the [Satisfaction of the family], [Regrets and self-accusation of the family], and [Maintaining the mental health of family members], as well as that of the patients, depending on the time of the evaluation. Nurses must pay careful attention to the bereaved family of patients specifically when the patients are unable to die at a preferred place, because the family members may feel regret and suffer from self-accusations, feeling grief, and depression as a result.

Next, as an important point which nurses have to keep in mind when assisting cancer patients in making the decision of a place of death, we discuss the assistance to patients and their families who are unable to communicate sufficiently with medical professionals. In decision-making about a place of death for cancer patients, [Open discussions with other persons concerned] is an important element. However, there are [Barriers to discussing death with others concerned]. It is difficult for patients who are not informed of the life expectancy to talk about a place of death with the family, and it is also difficult for patients and medical professionals to talk about the disease conditions and death. These difficult situations make it difficult to make a decision of a place of death. Traditionally, it was uncommon for medical professionals in Japan to inform families, instead of patients themselves, of patient life expectancy, and leave the decision to inform the patients of the life expectancy to the family.[46] However, in recent years, this tradition to inform the families of the life expectancy of their beloved family member has changed, and according to Ichikura et al.,[47] “the likelihood of doctors delivering bad news to patients and family members (as opposed to family members only) about the end of life increased from 2006 to 2012.” For this reason, nurses need to attend to cancer patients in a faithful manner, and understand what and how much the patients want to know in making decisions of a place of death. Further, when families play an important role in making decisions for cancer patients, nurses need to identify the relationship between patients and their families and family functions,[48] and also need to assess the wishes of the families as well as of the patients. If the patients and their families have different wishes, it is necessary to provide assistance to accommodate the feelings and thoughts of patients and their families.


  Conclusion Top


This study conducted a concept analysis of the decision-making about a place of death for cancer patients using thirty articles published in Japan and other countries. As a result, five attributes, six antecedents, and five outcomes were extracted, and this concept is defined as “The best choice according to circumstances of the cancer patients among different options for a place of death, resulting from a careful evaluation of the wishes of these patients and the burden on the family, as well as through open discussions with other persons concerned.” Nurses need to assess the intentions of and relationships with patients and family and provide assistance for cancer patients so that they will be able to discuss a place of death with their family and other persons concerned, as well as express their own feelings and ideas, and reach a mutual understanding. Further studies are necessary to elucidate the details of the categories and relationships shown in the attributes in this study from the experience of patients and their families, and to develop a support model that will help cancer patients in the terminal stage of their illness and their families to make decisions of a place of death.

Acknowledgments

I would like to express the deepest appreciation to Prof. Kumi Suzuki, Prof. Yasuhiro Tsuda, Prof. Kazuko Matsugi at Osaka Medical College Faculty of Nursing for their supervision on writing this paper.

Financial support and sponsorship

This study was financially supported by The Yuumi Memorial Foundation for Home Health Care.

Conflicts of interest

There are no conflicts of interest.



 
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Yoko Minamiguchi


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