Maria Friedrichsen

They do what they think is the best for me. Frail elderly patients' preferences for participation in their care during hospitalization

OBJECTIVEnTo deepen the knowledge of frail elderly patients preferences for participation in medical decision making during hospitalization.nnnMETHODSnQualitative study using content analysis of semi-structured interviews.nnnRESULTSnPatient participation to frail elderly means information, not the wish to take part in decisions about their medical treatments. They view the hospital care system as an institution of power with which they cannot argue. Participation is complicated by barriers such as the numerous persons involved in their care who do not know them and their preferences, differing treatment strategies among doctors, fast patient turnover in hospitals, stressed personnel and linguistic problems due to doctors not always speaking the patients own language.nnnCONCLUSIONnThe results of the study show that, to frail elderly patients, participation in medical decision making is primarily a question of good communication and information, not participation in decisions about medical treatments.nnnPRACTICE IMPLICATIONSnMore time should be given to thorough information and as few people as possible should be involved in the care of frail elderly. Linguistic problems should be identified to make it possible to take the necessary precautions to prevent negative impact on patient participation.

Breaking bad news in the transition from curative to palliative cancer care – patient's view of the doctor giving the information

Abstractu2002In 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.

A desire to be seen:: family caregivers' experiences of their caring role in palliative home care

Primary health care is the base of Swedish healthcare, and many terminally ill patients are cared for at home. A dying relative has a profound impact on his/her family members situation, including negative effects on roles, well-being, and health. The aim of this study was to explore how the informal carers of a dying relative in palliative home care experienced their caring role and support during the patients final illness and after death. Fourteen family members were selected in 4 primary health care areas in Sweden. Data were collected using open, tape-recorded interviews. A hermeneutic approach was used to analyze the data. The findings revealed that being an informal carer was natural when a relative became seriously ill. More or less voluntarily, the family member took on a caring role of control and responsibility. The informal carers felt left out and had feelings of powerlessness when they did not manage to establish a relationship with the healthcare professionals. For the informal carers to feel seen, it was necessary for them to narrate about their own supporting role.

Cancer patients' interpretations of verbal expressions when given information about ending cancer treatment

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.

What is a ‘secure base’ when death is approaching? A study applying attachment theory to adult patients' and family members' experiences of palliative home care

Attachment theory has received much interest lately in relation to how adults cope with stress and severe illness. The aim of this study was using the experiences of patients and family members to explore palliative home care as a ‘secure base’ (a central concept within the theory).

Doctors' Strategies When Breaking Bad News to Terminally Ill Patients

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 patients level, or with the doctor briefly describing the situation and then remaining silent, allowing room for the patients 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.

Are elderly people with co-morbidities involved adequately in medical decision making when hospitalised? A cross-sectional survey

BackgroundMedical decision making has long been in focus, but little is known of the preferences and conditions for elderly people with co-morbidities to participate in medical decision making. The main objective of the present study was to investigate the preferred and the actual degree of control, i.e. the role elderly people with co-morbidities wish to assume and actually had with regard to information and participation in medical decision making during their last stay in hospital.This study was a cross-sectional survey including three Swedish hospitals with acute admittance. The participants were patients aged 75 years and above with three or more diagnoses according to the International Classification of Diseases (ICD-10) and three or more hospitalisations during the last year.MethodsWe used a questionnaire combined with a telephone interview, using the Control Preference Scale to measure each participants preferred and actual role in medical decision making during their last stay in hospital. Additional questions were asked about barriers to participation in decision making and preferred information seeking role. The results are presented with descriptive statistics with kappa weights.ResultsOf the 297 elderly patients identified, 52.5% responded (n = 156, 46.5% male). Mean age was 83.1 years. Of the respondents, 42 of 153 patients said that they were not asked for their opinion (i.e. no shared decision making). Among the other 111 patients, 49 had their exact preferred level of participation, 37 had less participation than they would have preferred, and 23 had more responsibility than they would have preferred. Kappa statistics showed a moderate agreement between preferred and actual role (κw = 0.57; 95% CI: 0.45-0.69). Most patients wanted to be given more information without having to ask. There was no correlation between age, gender, or education and preferred role. 35% of the patients agreed that they experienced some of the various barriers to decision making that they were asked about: 1) the severity of their illness, 2) doctors with different treatment strategies, 3) difficulty understanding the medical information, and 4) difficulty understanding doctors who did not speak the patients own language.ConclusionsPhysicians are not fully responsive to patient preferences regarding either the degree of communication or the patients participation in decision making. Barriers to participation can be a problem, and should be taken into account more often when dealing with hospitalised elderly people.

Cancer patients' perceptions of their participation and own resources after receiving information about discontinuation of active tumour treatment.

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.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.

Too complex and time-consuming to fit in! Physicians' experiences of elderly patients and their participation in medical decision making: a grounded theory study

Objective To explore physicians thoughts and considerations of participation in medical decision making by hospitalised elderly patients. Design A qualitative study using focus group interviews with physicians interpreted with grounded theory and completed with a questionnaire. Setting and participants The setting was three different hospitals in two counties in Sweden. Five focus groups were conducted with physicians (n=30) in medical departments, with experience of care of elderly patients. Results Physicians expressed frustration at not being able to give good care to elderly patients with multimorbidity, including letting them participate in medical decision making. Two main categories were found: ‘being challenged’ by this patient group and ‘being a small part of the healthcare production machine’. Both categories were explained by the core category ‘lacking in time’. The reasons for the feeling of ‘being challenged’ were explained by the subcategories ‘having a feeling of incompetence’, ‘having to take relatives into consideration’ and ‘having to take cognitive decline into account’. The reasons for the feeling of ‘being a small part of the healthcare production machine’ were explained by the subcategories ‘at the mercy of routines’ and ‘inadequate remuneration system’, both of which do not favour elderly patients with multimorbidity. Conclusions Physicians find that elderly patients with multimorbidity lead to frustration by giving them a feeling of professional inadequacy, as they are unable to prioritise this common and rapidly growing patient group and enable them to participate in medical decision making. The reason for this feeling is explained by lack of time, competence, holistic view, appropriate routines and proper remuneration systems for treating these patients.

Experiencing one's body after a diagnosis of cancer--a phenomenological study of young adults.

Young adults with cancer are still in the process of shaping their lives and are therefore at a vulnerable stage. Altered body image may change how patients cope with the disease and impact rehabilitation capacity.