Individually Tailored Palliative Care in a Rural Region: A Representative Chart Survey and Physicians’ Experiences with Integrated Care

Background. Dying at home represents a special challenge in rural areas. This representative study describes the palliative care for patients in a rural German region. Methods. In a cross-sectional, representative study all physicians of a large rural area were surveyed in terms of their palliative care for a biennial period. In prestructured interviews and chart reviews physicians, practices, and palliative care patients’ characteristics were obtained. The data were matched with regional mortality data. Results. According to public data 463 inhabitants died during the biennial period: 248 patients (53.6%) died outside the region’s borders including all in-hospital patients, while 215 died within this territory (46.4%). Of the latter, a total of 91 patients (42.3%) received care by the 14 physicians surveyed (on average: 6.6 patients per physician). 89% of families were actively involved in care, especially in multigenerational family scenarios. If family members were not involved, nursing services were active instead. Significant predictors for dying at home were the wish to die at home, a cancer diagnosis, and having family support. Conclusions. This study shows a physician-based, individually tailored, rural palliative care approach which allowed the majority of patients to die at home. Families were documented as an important social resource.

The Room as Metaphor: Next-of-Kin’s Experiences in End-of-Life Care

The “room” in end-of-life is a phenomenon that needs deeper understanding as it is a dimension that shows how health and suffering are shaped. Research on the concept of room was chosen as theoretical foundation in this study in order to reach a profound understanding of the next-of-kin’s “room” in end-of-life care. Lassenius’s hermeneutic interpretation in metaphorical language was used as an deductive-inductive approach to the empirical data. The data material comprised 33 interviews with next-of-kin about their experiences of end-of-life care when being close to a relative dying from a cancer disease. The analysis of the data formed four cases: the Standby, the Asylum, the Wall, and the Place. These cases lend their voices to the experiences of the next-of-kin in the study. The findings of this study explain and may well assist nurses to understand the experiences of being next-of-kin in end-of-life care as forming a room of rest from the suffering, a room of controlling the suffering, a room of hiding from the suffering, and a room of belonging.

Concordance between Experiences of Bereaved Relatives, Physicians, and Nurses with Hospital End-of-Life Care: Everyone Has Their “Own Truth”

When patients die relatives and healthcare professionals may appreciate the quality of the dying phase differently, but comparisons are rare. In a cross-sectional study (June 2009–July 2012) the experiences of bereaved relatives, physicians, and nurses concerning the quality of dying in a large Dutch university hospital were compared, and the relation to communication was explored. Measurements were concordance on the quality of dying (QOD) (0–10 scale), awareness of impending death, and end-of-life communication. Results. Data on all three perspectives were available for 200 patients. Concordance in general was poor. Relatives’ scores for QOD (median 7; IQR 5–8) were lower than physicians and nurses’ (both median 7; IQR 6–8) (P=0.002). 48% of the relatives, 77% of the physicians, and 73% of the nurses had been aware of impending death. Physicians more often reported to have informed patients and relatives of end-of-life issues than relatives reported. When both physicians and relatives reported about such discussion, relatives’ awareness of impending death and presence at the patient’s deathbed were more likely. Conclusion. Relatives, physicians, and nurses seem to have their “own truth” about the dying phase. Professionals should put more emphasis on the collaboration with relatives and on verification of relative’s understanding.

Attitudes of Nonpalliative Care Nurses towards Palliative Care

The quality of palliative care given to terminally ill patients and their family members can be directly impacted by the attitudes that nurses hold towards palliative care. This study aimed to investigate the attitudes of nonpalliative care nurses towards death and dying in the context of palliative care. Nurses working within the medical aged care, cardiology and respiratory wards at two metropolitan teaching hospitals in Sydney completed the Frommelt Attitudes Towards Care of the Dying (FATCOD) scale, an anonymous self-administered questionnaire, and a twelve-item demographic questionnaire. A total of 95 completed surveys were used in the final analysis. The total FATCOD score was 119.8±11.1, patient FATCOD was 79.6±8.6, and family FATCOD was 40.2±4.4. Of significance, the professional variables designation and role were associated with attitudes in the total FATCOD and country of birth, designation, highest level of education, and role were associated with attitudes towards the patient FATCOD. Scores for communication between the nurse and the terminally ill patient were poor. Health care facilities should focus on developing strategies to improve the communication skills among nonpalliative care nurses in order to optimize patient outcomes.

What Proportion of Terminally Ill and Dying People Require Specialist Palliative Care Services?

Currently, around 55 million people die each year worldwide. That number is expected to increase rapidly with accelerating population aging. Despite growth in the number of palliative care specialists and specialist services in most countries, the prospect of an increasing number of terminally ill and dying persons is daunting. This paper attempts to answer the question: what proportion of terminally ill and dying persons require specialist palliative care services? To address this question and highlight which persons require specialist palliative care, the current state of access to specialist palliative care services and specialists in Canada and other countries is highlighted, along with available evidence-based information on specialist services utilization and the care needs of terminally ill and dying persons. Current evidence and information gaps reveal that this question cannot be answered now, but it should be answered in advance of a crisis of unmet end-of-life care needs with the rising death toll.

Living with Advanced Breast Cancer among Ghanaian Women: Emotional and Psychosocial Experiences

The purpose of this study was to explore the emotional and psychosocial experiences of Ghanaian women living with advanced breast cancer in the Kumasi metropolis. The study employed a qualitative exploratory descriptive design. Purposive sampling approach was used and data was saturated with 10 participants aged between 32 and 65 years. All interviews were audio-taped and transcribed. Data was analyzed concurrently based on the techniques of content analysis. Anonymity and confidentiality were ensured. Women experienced emotional reactions such as sadness, fear, and anxiety. Pain was severe and led to suicidal ideations. Women experienced lost hopes regarding their marriage, parenting, and work. They received support from their families, spouses, colleagues, health professionals, and spiritual leaders. Women coped by accepting the disease and surrendering to God and having the will to live. Five major themes described were emotional reactions, pain, lost hope, support, and coping. It was recommended that health care providers involved in breast cancer management should be trained to enhance effective and holistic care of women and their families. Also, patients with advanced disease should be given effective pain management and a multidisciplinary palliative care team should be instituted to care for the women.

Developing Strategies to Improve Advance Care Planning in Long Term Care Homes: Giving Voice to Residents and Their Family Members

Long term care (LTC) homes, also known as residential care homes, commonly care for residents until death, making palliative care and advance care planning (ACP) important elements of care. However, limited research exists on ACP in LTC. In particular, research giving voice to family members and substitute decision makers is lacking. The objective of this research was to understand experiences, perspectives, and preferences to guide quality improvement of ACP in LTC. This qualitative descriptive study conducted 34 individual semistructured interviews in two LTC homes, located in Canada. The participants were 31 family members and three staff, consisting of a front line care worker, a registered nurse, and a nurse practitioner. All participants perceived ACP conversations as valuable to provide “resident-centred care”; however, none of the participants had a good understanding of ACP, limiting its effectiveness. Strategies generated through the research to improve ACP were as follows: educating families and staff on ACP and end-of-life care options; better preparing staff for ACP conversations; providing staff skills training and guidelines; and LTC staff initiating systematic, proactive conversations using careful timing. These strategies can guide quality improvement of palliative care and development of ACP tools and resources specific to the LTC home sector.

Why Did an Out-of-Hospital Shift of Death and Dying Occur in Canada after 1994?

Canadian population mortality data reveal a significantly reduced proportion of deaths occurring in hospitals after 1994. Hospital deaths peaked at 80.5% in 1994, after a longstanding hospitalization-of-death trend in Canada. A decline in hospital-based death and dying has also occurred in some other countries. As the place of death can have multiple significant direct and indirect impacts on dying individuals, their families, and health services utilization and costs, it is important to understand factors for an out-of-hospital shift. An integrative review of Canadian print literature from 1995 was undertaken to identify these factors, with three themes emerging: (1) changes in health care and health system reforms after 1994 reduced both the availability and desirability of hospital-based care, (2) sociodemographic developments including aging of the population, increased multiculturalism, and diversity in accepted end-of-life care practices shifted place preferences, and (3) advances in palliative and end-of-life care, including a palliative care expansion out of hospital, supported nonhospital death, and dying processes. The period following 1994 was thus a time of major transformation during which the place of death and dying underwent important changes that supported and promoted a transition from hospital-based end-of-life care.

The Opinion of General Practitioners, Medical Students, and Other Medical Specialists on Palliative Care in Bulgaria

In Bulgaria, the patient is entitled to palliative care in case of incurable disease with an unfavourable prognosis. Palliative care is provided by the family doctor/GP and institutions. Literature on palliative care providing is scarce. The objective of the study was to investigate the opinion of general practitioners, medical students, and other medical specialists working in institutions on palliative care. Method. We have developed a structured questionnaire. Descriptive statistics have been calculated for all items. Differences between groups have been compared using u-criterion. Level of significance was P<0.05. Data has been analyzed using SPSS v. 16. Results. A total of 518 respondents completed the survey. Lack of appropriate organisation and financing has been pointed out by all participants. The GP’s role in palliative care providing has been described as a contradictory one. The criteria on the basis of which the patients are eligible for palliative care have been arranged in the same way by all respondents, but GPs chose the longest temporal indicator. Quality assessment has not been applied. 2/3 of respondents demanded palliative care training. Conclusion. On the whole, the investigated groups differed to some extent in their opinion on palliative care both on conceptual and practical levels.

Incidence and Cause of Delirium in Hospitalized Patients between the Ages of 18 and 56: A Retrospective Chart Review

Background. Delirium is a common and devastating condition which has been well characterized in elderly cancer patients, but little is known about delirium in cancer patients under the age of 65. Aim. A pilot study to explore the incidence and potential causes of delirium in hospitalized advanced cancer patients at the age of 18–56 years. Design. A retrospective chart review using validated instruments was used to examine the charts of hematology-oncology admissions in a large academic institution. Data was collected as to the likelihood of delirium and potential precipitants. Results. Delirium incidence was 29% among advanced cancer patients. The associated precipitants of delirium were multifactorial, the most common being medications and infection. Delirium was more common in patients admitted for either acute symptom management or the presence of a lung malignancy. Patients with delirium demonstrated significantly increased total hospital cost and a borderline significant result for increased mortality compared to those without delirium. Conclusions. Delirium is common in hospitalized advanced cancer patients (age 18–56 years) and the cause is typically multifactorial. Delirium results in a more complicated hospital course and likely increased mortality. Further research is needed to define strategies to prevent and treat this common and distressing condition.