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Crossing the border: Different ways cancer patients, family members and physicians experience information in the transition to the late palliative phase
Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of LAH/Linnéa.ORCID iD: 0000-0002-9606-3238
2002 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Information in the transition to the late palliative phase is not a well-studied area, especially not from the perspective of patients and family members. The aim of this thesis was to describe how cancer patients, family members and physicians experience information during the transition from a curative or early palliative phase to a late palliative phase, i.e. when tumour-specific treatment could not be offered. Cancer patients (n=30) admitted to palliative hospital based home care, family members (n=20) of cancer patients, and physicians (n=30) working with cancer patients in different settings were included in order to create a maximum variation sampling.

Tape-recorded, semi-structured interviews and qualitative, phenomenographic analyses were done in all the studies.

Patients described the physician as an expert (study I), an important person during this event, despite characterising him/her in different ways ranging from the empathetic professional to the rough and ready expert. Their relationship with the physician was also stressed. Their own resources, i.e. a sense of well being, a sense of security and individual strength, and their previous knowledge, were important components regarding their ability to take part in the communication (study II). Patients interpret words and phrases carefully and can perceive them as forewarnings, as being emotionally trying, and as fortifying and strengthening (study III). The overall message could be interpreted as either focused on quality if life, on treatment or on death and threat.

Family members wanted to protect the patient during this period and could be very active and prominent in their protective role (study IV). However, other family members described themselves as being in the background more or less involuntarily. Family members also felt that there were expectations regarding their behaviour, either that they should take over in terms of communication, or that they should restrict their participation. When giving information, the physicians had a clear goal - to make the patient understand while being as considerate toward the patient as possible. However, the strategies for reaching this goal differed and included: explaining and convincing, softening the impact and vaguely suggesting, preparing and adapting. Some physicians had a main strategy while others mixed different strategies depending on the context.

The experience of receiving and providing information about discontinuing tumour specific treatment is like crossing a border, where patients experience the behaviour of the physician and the words they express of great significance. Family members assume the role of protectors. Physicians use different strategies in order to help patients cross the border.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2002. , 68 p.
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 727
Keyword [en]
communication, information, patient-physician relationship, family, prognosis, palliative care, cancer
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-5231ISBN: 91-7373-166-8 (print)OAI: oai:DiVA.org:liu-5231DiVA: diva2:21214
Public defence
2002-04-26, Fornborgen, Vrinnevisjukhuset, Norrköping, 09:00 (English)
Opponent
Supervisors
Note
On the day of the public defence the status of the article II was: In press and the title was: Patient interpretation of verbal expressions when given information about ending cancer treatment.; the status of article V was: Submitted.Available from: 2002-05-24 Created: 2002-05-24 Last updated: 2015-06-10Bibliographically approved
List of papers
1. Breaking bad news in the transition from curative to palliative cancer care-patient's view of the doctor giving the information
Open this publication in new window or tab >>Breaking bad news in the transition from curative to palliative cancer care-patient's view of the doctor giving the information
2000 (English)In: Supportive Care in Cancer, ISSN 0941-4355, Vol. 8, no 6, 472-478 p.Article in journal (Refereed) Published
Abstract [en]

In the transition from curative to palliative cancer care, communication is of special importance. The aim of this study was to explore how patients with a disseminated cancer disease experienced the information about their incurable state, focusing on the physician. The persons taking part were 30 patients admitted to a hospital-based home care unit in Sweden. Semi-structured interviews were conducted and analysed using a qualitative method. All patients described their doctors as experts, despite different qualities. Six subcategories were identified: (1) the inexperienced messenger, (2) the emotionally burdened, (3) the rough and ready expert (4) the benevolent but tactless expert, (5) the "distanced" doctor and (6), the empathic professional. The relationship was described as very important to the patients' capacity to handle the information and was felt to have been built up during earlier meetings. The relationship was described in four subcategories: personal between well-acquainted individuals, impersonal between unacquainted individuals, personal between unacquainted individuals and impersonal between well-acquainted individuals. Both the character of the physician and his or her ability to create personal relationships influence patients' capacity to cope with this specific situation. Education and guidance are needed both in clinical practice and in medical schools.

Keyword
Doctor - patient communication, Palliative care, Behaviour, Patient's opinion
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-13723 (URN)10.1007/s005200000147 (DOI)
Available from: 2002-05-24 Created: 2002-05-24 Last updated: 2015-06-10
2. Cancer patients' perceptions of their own participation and own resources after receiving information about discontinuation of active tumour treatment
Open this publication in new window or tab >>Cancer patients' perceptions of their own participation and own resources after receiving information about discontinuation of active tumour treatment
2000 (English)In: Acta Oncologica, ISSN 0001-6381, Vol. 39, no 8, 919-925 p.Article in journal (Refereed) Published
Abstract [en]

The focus of most studies on informational needs has been on primary cancer diagnosis. The aim of this study was to explore how cancer patients in a palliative care setting perceived their own participation and resources after receiving information about the discontinuation of active tumour treatment. Thirty cancer patients admitted to a hospital-based home-care unit participated in the study. Semi-structured interviews were conducted and analysed using a phenomenographic method. The patients described their own participation as being either verbally passive or active, in order to receive more information or to avoid information. Furthermore, previous knowledge, at different levels, was described as important: 1) Unsuspecting naive, 2) apprehensive suspicious, 3) well prepared. Patients' own resources included a sense of wellbeing, a sense of security and individual strength. In conclusion, patients' previous knowledge and own resources are important components for their capacity to take part in the dialogue when receiving information.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-13724 (URN)10.1080/02841860050215882 (DOI)
Available from: 2002-05-24 Created: 2002-05-24 Last updated: 2015-06-10
3. Cancer patients' interpretations of verbal expressions when given information about ending cancer treatment
Open this publication in new window or tab >>Cancer patients' interpretations of verbal expressions when given information about ending cancer treatment
2002 (English)In: Palliative Medicine, ISSN 0269-2163, Vol. 16, no 4, 323-330 p.Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Cancer patients' interpretations of the meaning of words used when given bad news are not well studied in medical settings. The aim of this study was to ascertain what significance verbal expressions had for cancer patients when they were given information about ending active tumour treatment, and what message they felt they received.

METHODS: Tape-recorded semi-structured interviews were performed and analysed using a qualitative phenomenographical approach.

RESULTS: Thirty patients with incurable cancer admitted to hospital-based home care unit in Sweden participated. Three main categories about the significance of words emerged: 1) words could indicate indirect warnings as being forewarnings, evasive or ambiguous; 2) words could also be perceived as emotionally trying, as threats or abandoning; 3) other words were fortifying and strengthened the patient in this situation. The overall message given during the information could be interpreted differently: either focused on treatment, on quality of life, or on threat and death.

CONCLUSION: The understanding of the significance of words to tailor the information to patients helps the physician to use forewarnings and fortifying words and to identify and avoid the use of threatening words.

Keyword
communication, neoplasms, palliative care, patient perception, phenomenography
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-13725 (URN)10.1191/0269216302pm543oa (DOI)
Available from: 2002-05-24 Created: 2002-05-24 Last updated: 2015-06-10
4. Receiving bad news- experiences of family members
Open this publication in new window or tab >>Receiving bad news- experiences of family members
2001 (English)In: Journal of Palliative Care, ISSN 0825-8597, Vol. 17, no 4, 241-247 p.Article in journal (Refereed) Published
Abstract [en]

Little is known about how next-of-kin experience receiving bad news. The aim of this study was to explore the experiences of family members when receiving information about ending tumour treatment, with a focus on their role in this context.

METHODS: Semi-structured interviews were performed and analyzed using a qualitative phenomenographic method.

RESULTS: Twenty family members of patients with incurable progressive cancer admitted to hospital-based home care were included in the study. Data showed that family members want to protect, represent, or act on behalf of the patient. Some described themselves as assuming prominent roles: the demander-of-truth role, the secret-keeper role, and the controller role. Others assumed more passive roles: the surrendering role, the considerate listener role, and the excluded outsider role.

CONCLUSION: This study has revealed possible-explanations as to why family members are dissatisfied with information. The results of this study may help doctors in clinical practice recognize the different types of behaviour family members exhibit when receiving bad news.

Place, publisher, year, edition, pages
Montreal, Canada: Centre for Bioethics, 2001
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-13726 (URN)000173319900004 ()
Available from: 2002-05-24 Created: 2002-05-24 Last updated: 2017-12-13
5. Doctors' strategies when breaking bad news to terminally ill cancer patients
Open this publication in new window or tab >>Doctors' strategies when breaking bad news to terminally ill cancer patients
2003 (English)In: Journal of Palliative Medicine, ISSN 1096-6218, Vol. 6, no 4, 565-574 p.Article in journal (Refereed) Published
Abstract [en]

Breaking bad news to patients with a terminal disease is a difficult task for physicians. The aim of this study was to study how doctors perceive their strategies when giving information to cancer patients about discontinuing active tumour treatment. Thirty doctors with different demographic characteristics working with patients with cancer in Sweden participated. Semistructured interviews were conducted and analyzed using a qualitative phenomenographic method. The goal when giving this information was described as making the patient understands while being as considerate as possible. However, the strategies for reaching this goal were different: (1) explaining and convincing information, (i.e., giving a long explanation about why treatment has to be discontinued); (2) softening the impact of the information, with the doctor recommending discontinuation of treatment; (3) and preparing either the patient or the physician himself/herself for the information; (4) adapting or tailoring the information to the patient, with the doctor actively seeking knowledge about the patient in order to be able to adapt the information to the patient's level, or with the doctor briefly describing the situation and then remaining silent, allowing room for the patient's reactions and questions (i.e., letting the patient take an active part). When giving information, the doctors' goal was to make patients understand, but the strategies differed depending on the context.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-13727 (URN)10.1089/109662103768253678 (DOI)
Available from: 2002-05-24 Created: 2002-05-24 Last updated: 2015-06-10

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