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.
Department of Oncology-Pathology, Karolinska Institutet and The Vårdal Institute, The Swedish Institute for Health Sciences and Research and Development Department, Stockholms Sjukhem Foundation, Stockholm, Sweden. email@example.com
This paper explores how bereaved relatives experienced soft tissue massage during the first four months after the death of a family member who was in palliative cancer care.
Death of a close family member or friend is recognised as being an emotional and existential turning point in life. Previous studies emphasise need for various support strategies to assist relatives while they are grieving.
Eighteen bereaved relatives (11 women and seven men) received soft tissue massage (25 minutes, hand or foot) once a week for eight weeks. In-depth interviews were conducted after the end of the eight-week periods. Interviews were analysed using a qualitative descriptive content analysis method.
Soft tissue massage proved to be helpful and to generate feelings of consolation in the first four months of grieving. The main findings were organised into four categories: (1) a helping hand at the right time, (2) something to rely on, (3) moments of rest and (4) moments of retaining energy. The categories were then conceptualised into this theme: feelings of consolation and help in learning to restructure everyday life.
Soft tissue massage was experienced as a commendable source of consolation support during the grieving process. An assumption is that massage facilitates a transition toward rebuilding identity, but more studies in this area are needed.
Soft tissue massage appears to be a worthy, early, grieving-process support option for bereaved family members whose relatives are in palliative care.
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.
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.
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.
Department of Social and Welfare Studies, Linköping University, LAH/Unit of Palliative Care, University Hospital, Linköping, and Palliative Education and Research Centre in the County of Östergötland, Östergötland, Sweden. firstname.lastname@example.org
Resilience in relation to coping with stress, loss, and bereavement has recently received increased attention. The aim of the current study was to describe aspects that are experienced as a protection against powerlessness and/or helplessness during advanced palliative home care (APHC) or as a help when coping with such perceptions.
Both family members during ongoing APHC and family members 3-9 months after the patient's death responded (in total, N = 233; response rate 72%) to a postal questionnaire with mainly open-ended questions. The text responses were analyzed using Manifest Content Analysis.
Protection against powerlessness and helplessness had been facilitated by a stable patient condition, the patient coping well, a trusting relationship with the patient, practical and emotional support from family and friends, access to palliative expertise, and staff support that was both individually-focused and cooperative. Other aspects that had helped or protected family members against powerlessness and helplessness were a belief that they had their own reliable knowledge to manage the difficult situation, talking to someone, doing good for the patient, distracting activities, acceptance, meaning and hope, and an inner feeling of security.
The findings are discussed in relation to existential psychology, the dual process model of coping with bereavement, and repressive coping. Clinical implications are suggested.
During recent years, research networks and collaboratives focusing on palliative care research have been established both nationally and internationally resulting in several ongoing projects. In 2002, a clinician-based research network, the Palliative Care Research Network in Sweden (PANIS), was established to stimulate research and development of palliative care in Sweden. The growing network, which today includes 60 specialized palliative care units, has used a web-based survey generator to collect data on symptom prevalence, treatment traditions and important issues in palliative care. Eleven different studies involving almost 11,000 patients have been performed within the network including studies on prevalence of antitumoral treatment, the use of opioids, corticosteroids, blood transfusions, parenteral nutrition and prevalence of palliative sedation therapy in specialized palliative care. The working method of the research network is described, and demographic data from 9,298 patients in six cross-sectional studies are presented. Using a relatively simple research methodology, the network has succeeded in addressing key clinical questions and in this article we share experiences and challenges met during the journey.