The purpose of this study was to describe perceptions of hope-fostering strategies of elderly patients with advanced cancer receiving palliative home care. Using a qualitative thematic research design, saturation was reached with 10 palliative home care patients (mean age 75 years) (five males and five females). Face-to-face audiotaped interviews were conducted in the participants' homes. Participants described hope for: "not suffering more", "living life to the fullest in the little time I have left", a peaceful death, life after death and "hope for a better life in the future" for their family. Using Lubrosky's thematic analysis, themes of fostering their hope were: leaving a legacy, achieving short-term goals, "turn your mind off", supportive family and friends, symbols of hope, positive thoughts, honest information and symptom control.
This article provides a deeper understanding of how meaning can be created in everyday life at a nursing home. It is based on a primary study concerning dignity involving 12 older people living in two nursing homes in Sweden. A secondary analysis was carried out on data obtained from three of the primary participants interviewed over a period of time (18-24 months), with a total of 12 interviews carried out using an inductive hermeneutic approach. The study reveals that sources of meaning were created by having a sense of: physical capability, cognitive capability, being needed, and belonging. Meaning was created through inner dialogue, communication and relationships with others. A second finding is that the experience of meaning can sometimes be hard to realize.
This article examines the results of two studies conducted in Atlantic Canada to evaluate people's understanding of palliative care. In Study 1, a sample of adults were asked to respond to a brief survey. Respondents were asked if they had ever heard of palliative care. Those who answered "yes" were asked to respond to a number of additional questions about palliative care. The results of Study 1 revealed that over three-quarters of the respondents (75.3 percent) had heard of palliative care, however, only about half of these (48.4 percent) defined it as care for terminally ill or dying persons. Of those who had heard of palliative care, the vast majority (92.3 percent) said they would use palliative care services if they had a terminally ill family member In Study 2, respondents were presented with a written description of palliative care. After reading the description, respondents were asked to indicate whether or not they knew (prior to reading the description) what palliative care was. Those who answered "yes" were asked to provide a written explanation of how they first learned about palliative care; those who answered "no" were asked to provide written suggestions of how they believed information about palliative care should be disseminated to the public. The results revealed that 60.5 percent of the respondents knew about palliative care before reading the description. Of those who knew about palliative care, 40.8 percent of them first learned about it through personal experience with the death of a family member or close friend. Of those who did not know what palliative care was, the suggestions they gave for creating community awareness of palliative care included: information disseminated by healthcare providers, use of pamphlets, the media, and the church.
Two studies were conducted to examine people's motives for joining a palliative care volunteer program. To generate a pool of reasons for becoming a palliative care volunteer, previous studies of motivations relevant to palliative care were reviewed and interviews were conducted with 15 palliative care volunteers (Study 1). Combining the literature review and interviews, a total of 22 distinct reasons for volunteering were identified and used to create an Inventory of Motivations for Palliative Care Voluntarism (IMPCV). In Study 2, 113 palliative care volunteers responded to the IMPCV. "To help ease the pain of those living with a life-threatening illness" was rated as the most influential reason for becoming a palliative care volunteer. A principal components factor analysis was conducted on the IMPCV. It was decided that four factors adequately represented the items: Leisure, Personal Gain, Altruism, and Civic Responsibility.
An increasing number of older people are living with incurable cancer as a chronic disease, requiring palliative care from specialized healthcare for shorter or longer periods of time. The aim of our study was to describe how they experience daily living while receiving palliative care in specialized healthcare contexts.
We conducted a qualitative research study with a phenomenological approach called "systematic text condensation." A total of 21 participants, 12 men and 9 women, aged 70-88, took part in semistructured interviews. They were recruited from two somatic hospitals in southeastern Norway.
The participants experienced a strong link to life in terms of four subthemes: to acknowledge the need for close relationships; to maintain activities of normal daily life; to provide space for existential meaning-making and to name and handle decline and loss. In addition, they reported that specialized healthcare contexts strengthened the link to life by prioritizing and providing person-centered palliative care.
Older people with incurable cancer are still strongly connected to life in their daily living. The knowledge that the potential for resilience remains despite aging and serious decline in health is considered a source of comfort for older people living with this disease. Insights into the processes of existential meaning-making and resilience are seen as useful in order to increase our understanding of how older people adapt to adversity, and how their responses may help to protect them from some of the difficulties inherent to aging. Healthcare professionals can make use of this information in treatment planning and for identification of psychosocial and sociocultural resources to support older people and to strengthen patients' life resources.
We provide preliminary psychometric results concerning the use of a modified FAMCARE scale, adapted for patient use, to assess satisfaction with outpatient care in advanced stage cancer patients.
Participants were 145 outpatients with advanced cancer who were participating in a phase II trial of an outpatient palliative care intervention. Patients completed our modified FAMCARE measure of patient satisfaction and the Edmonton Symptom Assessment Scale, a measure of symptom burden. Individuals were also assessed for performance status using the Eastern Cooperative Oncology Group scale. We conducted an exploratory factor analysis of the patient satisfaction measure and performed correlations of satisfaction with symptom burden as well as with performance status.
Factor analysis of the satisfaction measure revealed a one-factor structure and suggested the removal of one nonloading item, producing a 16-item scale (FAMCARE-P16) with high internal reliability. Patient satisfaction was not correlated with performance status, but was inversely associated with symptom burden, particularly with depression and anxiety.
The FAMCARE-P16 may be used to assess satisfaction with outpatient palliative care interventions of patients with advanced stage cancer in both clinical settings and prospective trials.
Acupuncture involves the insertion of needles into designated acupuncture points to aid in the treatment of symptoms and to improve health.
A survey was conducted in a tertiary palliative care unit where 50 patients with advanced cancer were surveyed to determine their understanding of, use of, and interest in acupuncture.
Twenty-seven (54%) patients provided an accurate understanding of acupuncture. Although only 30% of patients had previously used acupuncture to treat noncancer medical conditions and only 10% had used it for cancer related symptoms, 80% of patients were interested in seeing an acupuncture practitioner on the care unit if one was made available.
Although few advanced cancer patients on a tertiary palliative care unit had previously received acupuncture, many had a general understanding of this complementary therapy, and expressed an interest in seeing an acupuncture practitioner.
BACKGROUND: The diagnosis of an incurable disease implies an existential crisis. This study focused on the emotions, perceptions, and experiences of existential isolation in palliative patients with cancer and their families. MATERIALS AND METHODS: A total of 40 respondents (20 patients and 20 family members) were interviewed in depth. All were Swedes who defined themselves as nonreligious. The patients were enrolled in an advanced hospital-based home care team. The interviews were taped, transcribed, and analyzed with a qualitative, hermeneutic method. RESULTS: The data revealed experiences of existential loneliness with the impending death as a primary source. Experiences of being alone in "a world of one's own" were common. The changes in everyday life and the increasingly restricted social interaction because of the illness meant that the patient partly lost the protection against isolation that the spirit of community normally provides. Other situations that had a triggered the existential isolation were, for example, when a patient in need of support was left alone, when he or she was treated disrespectfully or in a way that made him or her feel invisible, or when people avoided contact because of uneasiness or fear. Changes in one's own body and mood gave rise to feelings of loneliness and unfamiliarity toward oneself. When a staff member touched the patient's body in a nonempathic way, this could induce feelings of being treated like an animal.
Access to expertise in palliative management in areas not served by palliative care consultants is an ongoing challenge. This study examines a unique service offered in British Columbia: a 24-hour telephone hotline available to physicians, nurses, and pharmacists across the province.
Records of calls to the hotline over 4 years were collected. Call data included information on the caller, patient, and problem. The resulting database was analyzed for trends, including cross-tabulations to look for associations between call characteristics.
Six hundred ninety-two calls were included. A large variety of topics were addressed in significant numbers, ranging from symptom control to ethical concerns. The primary reason for calls to the line was pain management, followed by gastrointestinal symptoms such as nausea, diarrhea, and bowel obstruction. Patients with cancer diagnoses dominated the call volume; lung, colon, breast, prostate, and pancreatic cancer were the most common specific diagnoses. The majority of calls, when analyzed by population, came from areas with significant rural populations.
British Columbia's Palliative Care Hotline provides a valuable service that has been utilized province-wide with increasing frequency over the 6 years it has been in operation. It serves a variety of professionals and significant number of patients. Rural communities utilize the service with the most frequency, indicating the support needed in these communities. Similar services should be considered in other jurisdictions.
The components of good and bad deaths have not been well elucidated in the literature. Furthermore, the value of using narratives in palliative care research has not been extensively explored. We invited people involved in palliative care (patients, caregivers, physicians, and nurses) to tell us their stories of good and bad deaths, and 15 responded. We asked them to tell us about the good and bad deaths that they had witnessed and to describe what a good death and a bad death would be like for them, personally. Several common themes emerged from their good death narratives: a death free from pain, the sense of a life well lived, and a sense of community. Common bad death themes included a painful death and a loss of control and independence. We found that the use of story in palliative care provided an opportunity to create meaning and to heal for both the teller and the listener.