GOALS: (1). To describe what aspects are important when next-of-kin evaluate advanced palliative home care (APHC) and (2). to compare the expressed aspects and describe eventual differences among the three settings, which differed in terms of length of services, geographic location, and population size. SUBJECTS AND METHODS: Four to 7 months after the patient's death (87% from cancer), 217 consecutive next-of-kin from three different settings in Sweden responded (response rate 86%) to three open-ended questions via a postal questionnaire. Qualitative content analysis was performed. MAIN RESULTS: Service aspects and comfort emerged as main categories. The staff's competence, attitude and communication, accessibility, and spectrum of services were valued service aspects. Comfort, such as feeling secure, was another important aspect and it concerned the next-of-kin themselves, the patients, and the families. Additionally, comfort was related to interactional issues such as being in the center and sharing caring with the staff. The actual place of care (i.e., being at home) added to the perceived comfort. Of the respondents, 87% described positive aspects of APHC and 28% negative aspects. No major differences were found among the different settings. CONCLUSIONS: Next-of-kin incorporate service aspects and aspects relating to the patient's and family's comfort when evaluating APHC. The importance of these aspects is discussed in relation to the content of palliative care and potential goals.
Although differentiated thyroid cancer (DTC) has an excellent prognosis and a low incidence of recurrence, lifelong follow-up and medication might be needed. The aim of this study was to clarify how living with a cancer diagnosis for many years affects health-related quality of life (HRQoL) in DTC patients in Sweden.
From the national all-encompassing population-based Swedish Cancer Registry, 353 patients diagnosed with DTC between 1995 and 1998 were identified and invited to answer the HRQoL questionnaire SF-36 and a study-specific questionnaire, 14-17 years after their diagnosis. Data were compared with a reference population as well between subgroups of patients.
Of the patients with DTC, 279 (79%) answered the questionnaires. In all, only 19 (7%) reported a recurrence, however, as many as 134 (48%) stated that they still had concerns about having a recurrence. The HRQoL in those with a recurrence was significantly lower than those without concerns of a recurrence in five of eight domains (p?
Deliberations on euthanasia are mostly theoretical, and often lack first-hand perspectives of the affected persons.
Sixty-six patients suffering from cancer in a palliative phase were interviewed about their perspectives of euthanasia in relation to autonomy. The interviews were transcribed verbatim and analysed using qualitative content analysis with no predetermined categories.
The informants expressed different positions on euthanasia, ranging from support to opposition, but the majority were undecided due to the complexity of the problem. The informants' perspectives on euthanasia in relation to autonomy focused on decision making, being affected by (1) power and (2) trust. Legalization of euthanasia was perceived as either (a) increasing patient autonomy by patient empowerment, or (b) decreasing patient autonomy by increasing the medical power of the health care staff, which could be frightening. The informants experienced dependence on others, and expressed various levels of trust in others' intentions, ranging from full trust to complete mistrust.
Dying cancer patients perceive that they cannot feel completely independent, which affects true autonomous decision making. Further, when considering legalization of euthanasia, the perspectives of patients fearing the effects of legalization should also be taken into account, not only those of patients opting for it.
Differentiated thyroid cancer (DTC) has a good prognosis but a remaining risk of recurrence, and life-long follow-up as well as medication with levothyroxine may be necessary. The aim of this study was to clarify how thyroid-related symptoms affect health-related quality of life (HRQoL) 14-17 years after diagnosis in Swedish DTC patients.
From the all-encompassing population-based Swedish Cancer Registry, 353 patients diagnosed with DTC during 1995-1998 were identified and invited to answer a study-specific questionnaire and the HRQoL questionnaire SF-36 14-17 years after their diagnosis. Subgroups were studied according to thyroid-related symptoms, both symptoms correlated to thyroid disease or levothyroxine treatment and side effects from surgery and radioiodine treatment.
Of the patients with DTC, 279 (79%) answered the questionnaires. In all, only 19 (7%) reported a recurrence. Patients with one single symptom (e.g., fatigue, sleeping disorders, irritability, lower stress resistance, muscle weakness, bodily restlessness, sweating, palpitations, or flushes) had significantly lower HRQoL measured with the SF-36 compared to those without that specific symptom (p?14 years after diagnosis.
Several studies focus on palliative aspects of the caregiver burden of dementia families. However, only few studies have addressed the existential perspective in this situation. The aim of this study was, therefore, to focus on issues of freedom/responsibility, existential isolation, death, and issues of meaning/meaninglessness.
Qualitative tape-recorded in-depth interviews with 20 family members were conducted. The transcripts were analyzed with a hermeneutic approach.
To take responsibility (faithfulness; paying back) was generally perceived as rewarding, but in some cases it was more a matter of duty with elements of guilt and obligation. Existential isolation dealt with the hampered or ended communication with a spouse or parent who was no longer able to communicate; the situation of having no other relatives left in life or, the role-reversal (i.e., to parent your own parent). Thoughts about the impending death were affected by previous experiences, not only by the actual situation. Anticipatory grief was commonplace. Some informants described an increased awareness of the shortness of life, which made them live more intensely in the present. The illness itself was discussed in terms of meaninglessness. Still, many respondents were able to identify meaning in the past (memories), present (daily routines, positive aspects of responsibility) and future (to pass on the patient's lifework).
The study underlines the importance of not only seeing the physical and psychosocial caregiver aspects, but also the existential ones that emerge when confronting impending death. Staff need to be more aware of existential issues in order to support families also in existential crisis.
The experience of hope among cancer patients in palliative care is important information for healthcare providers, but research on the subject is sparse. The aim of this article was to explore how cancer patients admitted to palliative home care experienced the significance of hope and used hope during 6 weeks throughout the last phase of their life, and to assess their symptoms and hope status during 6 weeks throughout the last phase of their lives.
Eleven adult patients with cancer participated in 20 interviews and completed seven diaries. The participants were recruited from two palliative care units in the southeast of Sweden. The method used was Grounded Theory (GT), and analysis was based on the constant comparative method.
The core category, glimmering embers, was generated from four processes: (1) The creation of "convinced" hope, with a focus on positive events, formed in order to have something to look forward to; (2) The creation of "simulated hope," including awareness of the lack of realism, but including attempts to believe in unrealistic reasons for hope; (3) The collection of and maintaining of moments of hope, expressing a wish to "seize the day" and hold on to moments of joy and pleasure; and (4) "Gradually extinct" hope, characterized by a lack of energy and a sense of time running out.
The different processes of hope helped the patients to continue to live when they were close to death. Hope should be respected and understood by the professionals giving them support.
Chronic obstructive pulmonary disease (COPD) is a common cause of death. Despite the heavy symptom burden in late stages, these patients are relatively seldom referred to specialist palliative care.
A web-based survey concerning medical and organizational aspects of palliative care in COPD was distributed to respiratory physicians in Sweden. There were 93 respondents included in the study.
Palliative care issues were regularly discussed with the patients according to a third of the respondents. About half of the respondents worked in settings where established routines for co-operation with palliative units were available at least to some extent. Less than half of the respondents (39%) were aware of current plans to develop palliative care, either as a co-operative effort or within the facility. Palliative care is focused on physical, psychological, social, and existential dimensions, and the proportions of respondents providing support within these dimensions, 'always' or 'often', were 83%, 36%, 32%, and 11%, respectively. Thus, to treat the physical dimensions was perceived as much more obvious than to address the other dimensions.
The survey indicates that the priorities and resources for palliative care in COPD are insufficient in Sweden. The data, despite limitations, reveal a lack of established team-work with specialized palliative care units and actual plans for such co-operation.