Research

1862 KiB

Open AccessArticle

Being-in-the-Chemotherapy-Suite versus Being-in-the-Oncology-Ward: An Analytical View of Two Hospital Sites Occupied by People Experiencing Cancer

by Catherine Hughes, Kate Van Heugten, Sally Keeling and Francisc Szekely

Cancers 2017, 9(6), 64; https://doi.org/10.3390/cancers9060064 - 05 Jun 2017

Cited by 3 | Viewed by 5788

Abstract

How do people with cancer occupy places within the health system during their journey through palliative care? The answer to this question was explored by the authors as part of a wider ethnographic study of eight people’s journeys from referral to palliative care [...] Read more.

How do people with cancer occupy places within the health system during their journey through palliative care? The answer to this question was explored by the authors as part of a wider ethnographic study of eight people’s journeys from referral to palliative care services to the end of life. This article reports on findings that have emerged from ongoing analysis that has been completed in the years proceeding data collection. An ethnographic research design was used to collect data about the participants and their family members over a three-year period. Data was collected using participant observation and semi-structured interviews. Over 380 transcripts based on field note entries and taped interviews were produced during the 1121 h of contact with participants and family members that made up the research period. Analysis of these texts identified two focal sites within Christchurch Hospital that were occupied by the participants. These were the Chemotherapy Suite and the Oncology Ward. Drawing on literature concerning previous anthropological analysis, research was conducted to understand how places affect people and how people affect places. The researchers have used a model outlined by the American ethnographer Miles Richardson to analyse two distinct sites within one hospital. As explained in Richardson’s article, whose title is used to model the title of this article, a sense of place becomes apparent when comparing and contrasting two sites within the same location. Richardson’s article is highly interpretative and relies not only on pre-existing theoretical frameworks but also on personal interpretation. The same approach has been used in the current article. Here, ethnographic methods require the researcher’s interpretation of how participants occupied these sites. Following this approach, the Chemotherapy Suite is presented as a place where medicine dominates illness, and appears as distinct from the Oncology Ward, where disease predominates and death is secreted away. Full article

(This article belongs to the Special Issue End-of-Life Cancer Care)

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560 KiB

Open AccessArticle

Caregiving and Its Resulting Effects—The Care Study to Evaluate the Effects of Caregiving on Caregivers of Patients with Advanced Cancer in Singapore

by Cheryl Kai Ting Chua, Jun Tian Wu, Yin Yee Wong, Limin Qu, Yung Ying Tan, Patricia Soek Hui Neo and Grace Suyin Pang

Cancers 2016, 8(11), 105; https://doi.org/10.3390/cancers8110105 - 15 Nov 2016

Cited by 22 | Viewed by 6362

Abstract

Informal caregivers (IC) are key to enabling home deaths, where preferred, at the end-of-life. Significant morbidity from advanced cancer can make caregiving burdensome. However, knowledge about the nature of the caregiving burden for caregivers in Singapore is limited. Hence, the key objective in [...] Read more.

Informal caregivers (IC) are key to enabling home deaths, where preferred, at the end-of-life. Significant morbidity from advanced cancer can make caregiving burdensome. However, knowledge about the nature of the caregiving burden for caregivers in Singapore is limited. Hence, the key objective in this study was to examine the impact of the caregiving burden on quality of life (QOL), mental health and work capacity among local ICs. Eligible English-speaking ICs of hospitalized advanced cancer patients were recruited through non-random sampling. The Zarit Burden Interview (ZBI), Caregiver Quality of Life Index—Cancer (CQOLC), Center for Epidemiologic Studies Depression Scale—Revised (CESD-R), and Work Productivity and Activity Impairment Questionnaire (WPAI) were interviewer-administered to eligible ICs. Altogether, 16 ICs were surveyed. The mean age of ICs was 43.8 years. Most were children of patients (43.8%), and eight ICs had high burden (ZBI > 17). Those with ZBI > 17 had lower QOL, higher depression scores as well as greater work and activity impairment. In conclusion, high caregiver burden has adverse effects on QOL, mental health and work productivity. Non-physical elements of caregiving (particularly financial and decision-making) and increased number of care roles undertaken by a single IC contribute to high burden. Future interventions for caregiving burden in Singapore should also address the financial and decision-making aspects of caregiving. Outsourcing selected aspects of the caregiving role to community services may reduce the number of caregiving aspects undertaken by a single IC and caregiver burden. Full article

(This article belongs to the Special Issue End-of-Life Cancer Care)

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182 KiB

Open AccessArticle

Translating into Practice Cancer Patients’ Views on Do-Not-Resuscitate Decision-Making

by Ian N. Olver and Jaklin A. Eliott

Cancers 2016, 8(10), 89; https://doi.org/10.3390/cancers8100089 - 27 Sep 2016

Cited by 4 | Viewed by 4390

Abstract

Do-not-resuscitate (DNR) orders are necessary if resuscitation, the default option in hospitals, should be avoided because a patient is known to be dying and attempted resuscitation would be inappropriate. To avoid inappropriate resuscitation at night, if no DNR order has been recorded, after-hours [...] Read more.

Do-not-resuscitate (DNR) orders are necessary if resuscitation, the default option in hospitals, should be avoided because a patient is known to be dying and attempted resuscitation would be inappropriate. To avoid inappropriate resuscitation at night, if no DNR order has been recorded, after-hours medical staff are often asked to have a DNR discussion with patients whose condition is deteriorating, but with whom they are unfamiliar. Participants in two qualitative studies of cancer patients’ views on how to present DNR discussions recognized that such patients are at different stages of understanding of their situation and may not be ready for a DNR discussion; therefore, a one-policy-fits-all approach was thought to be inappropriate. To formulate a policy that incorporates the patient’s views, we propose that a standard form which mandates a DNR discussion is replaced by a “blank sheet” with instructions to record the progress of the discussion with the patient, and a medical recommendation for a DNR decision to guide the nursing staff in case of a cardiac arrest. Such an advance care directive would have to honor specifically expressed patient or guardian wishes whilst allowing for flexibility, yet would direct nurses or other staff so that they can avoid inappropriate cardiopulmonary resuscitation of a patient dying of cancer. Full article

(This article belongs to the Special Issue End-of-Life Cancer Care)

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Open AccessArticle

Antibiotic Treatment in End-of-Life Cancer Patients—A Retrospective Observational Study at a Palliative Care Center in Sweden

by Maria Helde-Frankling, Jenny Bergqvist, Peter Bergman and Linda Björkhem-Bergman

Cancers 2016, 8(9), 84; https://doi.org/10.3390/cancers8090084 - 06 Sep 2016

Cited by 40 | Viewed by 6691

Abstract

Background: The aim of this study was to elucidate whether palliative cancer patients benefit from antibiotic treatment in the last two weeks of life when an infection is suspected. Method: We reviewed medical records from 160 deceased palliative cancer patients that [...] Read more.

Background: The aim of this study was to elucidate whether palliative cancer patients benefit from antibiotic treatment in the last two weeks of life when an infection is suspected. Method: We reviewed medical records from 160 deceased palliative cancer patients that had been included in previous studies on vitamin D and infections. Patients treated with antibiotics during the last two weeks of life were identified and net effects of treatment (symptom relief) and possible adverse events were extracted from medical records. Results: Seventy-nine patients (49%) had been treated with antibiotics during the last two weeks in life. In 37% (n = 29), the treatment resulted in evident symptom relief and among these 50% had a positive bacterial culture, 43% had a negative culture and in 7% no culture was taken. Among the patients with no or unknown effect of antibiotics, 50% had a positive culture. When the indication for antibiotic treatment was to avoid or treat sepsis, symptom relief was achieved in 50% of the patients (n = 19). Only 4% (n = 3) of the patients experienced adverse events of the treatment (diarrhea, nausea). Conclusions: Treating infections with antibiotics in the last weeks of life may improve the quality of life for palliative cancer patients, especially if sepsis is suspected or confirmed. According to our results, the beneficial effects outweigh the potentially negative outcomes. Full article

(This article belongs to the Special Issue End-of-Life Cancer Care)

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Review

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211 KiB

Open AccessReview

Care at the Very End-of-Life: Dying Cancer Patients and Their Chosen Family’s Needs

by Katherine Clark

Cancers 2017, 9(2), 11; https://doi.org/10.3390/cancers9020011 - 24 Jan 2017

Cited by 40 | Viewed by 9845

Abstract

The majority of cancer deaths in countries such as Australia are predictable and most likely to occur in hospital. Despite this, hospitals remain challenged by providing the best care for this fragile cohort, often believing that care with palliative intent at the very [...] Read more.

The majority of cancer deaths in countries such as Australia are predictable and most likely to occur in hospital. Despite this, hospitals remain challenged by providing the best care for this fragile cohort, often believing that care with palliative intent at the very end-of-life is not the best approach to care. Given the importance that dying patients place on excellent symptom control, failing to provide good end-of-life care is likely to be contrary to the wishes of the imminently dying patient and their family. This becomes even more significant when the impact of care on the bereavement outcomes of families is considered. Given the rising numbers of predicable hospital deaths, an urgent need to address this exists, requiring health professionals to be cognisant of specific care domains already identified as significant for both patients and those closest to them in knowledge, care and affection. This non-systematic review’s aims are to summarise the symptoms most feared by people imminently facing death which is defined as the terminal phase of life, where death is imminent and likely to occur within hours to days, or very occasionally, weeks. Further, this paper will explore the incidence and management of problems that may affect the dying person which are most feared by their family. The final section of this work includes a brief discussion of the most significant issues that require attention. Full article

(This article belongs to the Special Issue End-of-Life Cancer Care)

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Open AccessReview

Advance Care Planning in Glioblastoma Patients

by Lara Fritz, Linda Dirven, Jaap C. Reijneveld, Johan A. F. Koekkoek, Anne M. Stiggelbout, H. Roeline W. Pasman and Martin J. B. Taphoorn

Cancers 2016, 8(11), 102; https://doi.org/10.3390/cancers8110102 - 08 Nov 2016

Cited by 45 | Viewed by 7578

Abstract

Despite multimodal treatment with surgery, radiotherapy and chemotherapy, glioblastoma is an incurable disease with a poor prognosis. During the disease course, glioblastoma patients may experience progressive neurological deficits, symptoms of increased intracranial pressure such as drowsiness and headache, incontinence, seizures and progressive cognitive [...] Read more.

Despite multimodal treatment with surgery, radiotherapy and chemotherapy, glioblastoma is an incurable disease with a poor prognosis. During the disease course, glioblastoma patients may experience progressive neurological deficits, symptoms of increased intracranial pressure such as drowsiness and headache, incontinence, seizures and progressive cognitive dysfunction. These patients not only have cancer, but also a progressive brain disease. This may seriously interfere with their ability to make their own decisions regarding treatment. It is therefore warranted to involve glioblastoma patients early in the disease trajectory in treatment decision-making on their future care, including the end of life (EOL) care, which can be achieved with Advance Care Planning (ACP). Although ACP, by definition, aims at timely involvement of patients and proxies in decision-making on future care, the optimal moment to initiate ACP discussions in the disease trajectory of glioblastoma patients remains controversial. Moreover, the disease-specific content of these ACP discussions needs to be established. In this article, we will first describe the history of patient participation in treatment decision-making, including the shift towards ACP. Secondly, we will describe the possible role of ACP for glioblastoma patients, with the specific aim of treatment of disease-specific symptoms such as somnolence and dysphagia, epileptic seizures, headache, and personality changes, agitation and delirium in the EOL phase, and the importance of timing of ACP discussions in this patient population. Full article

(This article belongs to the Special Issue End-of-Life Cancer Care)

Other

Jump to: Research, Review

555 KiB

Open AccessProject Report

Ensuring Quality in Online Palliative Care Resources

by Jennifer Tieman

Cancers 2016, 8(12), 113; https://doi.org/10.3390/cancers8120113 - 13 Dec 2016

Cited by 13 | Viewed by 4913

Abstract

Evidence and information is an integral part of the processes enabling clinical and service delivery within health. It is used by health professionals in clinical practice and in developing their professional knowledge, by policy makers in decision making, and is sought by health [...] Read more.

Evidence and information is an integral part of the processes enabling clinical and service delivery within health. It is used by health professionals in clinical practice and in developing their professional knowledge, by policy makers in decision making, and is sought by health consumers to help them manage their health needs and assess their options. Increasingly, this evidence and information is being disseminated and sought through online channels. The internet is fundamentally changing how health information is being distributed and accessed. Clinicians, patients, community members, and decision makers have an unprecedented capacity to find online information about palliative care and end-of-life care. However, it is clear that not all individuals have the skills to be able to find and assess the quality of the resources they need. There are also many issues in creating online resources that are current, relevant and authoritative for use by health professionals and by health consumers. This paper explores the processes and structures used in creating a major national palliative care knowledge resource, the CareSearch website, to meet the needs of health professionals and of patients and their families and carers. Full article

(This article belongs to the Special Issue End-of-Life Cancer Care)

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149 KiB

Open AccessCommentary

A Music Therapist Shares Stories of Patients with Cancer

by Kathy Jo Gutgsell

Cancers 2016, 8(11), 104; https://doi.org/10.3390/cancers8110104 - 15 Nov 2016

Viewed by 3785

Abstract

Since the publication of my research reporting that music therapy reduces pain in palliative care patients [1], many people have expressed curiosity about what it is I do with patients.[...] Full article

(This article belongs to the Special Issue End-of-Life Cancer Care)

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