Palliative care for patients with cancer: do patients receive the care they consider important? A survey study

Heins, M.; Hofstede, J.; Rijken, Mieke; Korevaar, Joke C.; Donker, Gé; Francké, Anneke L.

doi:10.1186/s12904-018-0315-3

Cited by 18 publications

(23 citation statements)

References 27 publications

(22 reference statements)

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“…The main reasons for asking for IPCC support seems to be physical symptom burden and help in organizing further care. The former is consistent with results of earlier studies throughout different countries [38][39][40], and is a very common connotation of PC. Organization of further care in terms of support in organizing home or hospice care or transferring patients to PC units was a frequently addressed issue and seems to be more present than in other studies.…”

Section: Discussionsupporting

confidence: 92%

Impact, challenges and limits of inpatient palliative care consultations – perspectives of requesting and conducting physicians

Coym

Kanitz

Puls

et al. 2020

BMC Health Serv Res

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Background: Inpatient palliative care consultation (IPCC) teams have been established to improve care for patients with specialist palliative care (PC) needs throughout all hospital departments. The objective is to explore physicians' perceptions on the impact of IPCC, its triggers, challenges and limits, and their suggestions for future service improvements. Methods: A Qualitative study drawing on semi-structured interviews with 10 PC specialists of an IPCC team and nine IPCC requesting physicians from oncology and non-oncological departments of a university hospital. Analysis was performed using qualitative content analysis. Results: PC specialists and IPCC requesting physicians likewise considered organization of further care and symptom-burden as main reasons for IPCC requests. The main impact however was identified from both as improvement of patients' (and their caregivers') coping strategies and relief of the treating team. Mostly, PC specialists emphasized a reduction of symptom burden, and improvement of further care. Challenges in implementing IPCC were lack of time for both. PC specialists addressed requesting physicians' skepticism towards PC. Barriers for realization of IPCC included structural aspects for both: limited time, staff capacities and setting. PC specialists saw problems in implementing recommendations like disagreement towards their suggestions. All interviewees considered education in PC a sensible approach for improvement. Conclusions: IPCC show various positive effects in supporting physicians and patients, but are also limited due to structural problems, lack of knowledge, insecurity, and skepticism by the requesting physicians. To overcome some of these challenges implementation of PC education programs for all physicians would be beneficial.

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Section: Discussionsupporting

confidence: 92%

Impact, challenges and limits of inpatient palliative care consultations – perspectives of requesting and conducting physicians

Coym

Kanitz

Puls

et al. 2020

BMC Health Serv Res

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“…It can therefore be challenging for patients to remain at home for as long as they would like. It has been found that older patients with cancer who live alone make plans for death, but not for dying [56]. This underlines the need for healthcare professionals to focus on advanced care planning, especially for patients living alone, taking account of the fact that care aid support and health technology can have the potential to provide them with a sense of security [57,58].…”

Section: Discussionmentioning

confidence: 99%

A sense of security in palliative homecare in a Norwegian municipality; dyadic comparisons of the perceptions of patients and relatives - a quantitative study

Hov

Bjørsland

Kjøs³

et al. 2020

BMC Palliat Care

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Background: As palliative care increasingly takes place in patients' homes, perceptions of security among patients in the late palliative phase and their relatives are important. Aim: To describe and compare patient-relative dyads regarding their perceptions of security in palliative homecare, including the perceived security of the actual care given to the patients, as well as the subjective importance of that care. Methods: A cross sectional questionnaire study including 32 patient-relative dyads was conducted in an urban municipality in Norway. Patients were in a late palliative phase and received palliative homecare. Each patient proposed one relative. Data were collected using a modified version of the Quality from the Patients' Perspective instrument (QPP), which focuses on security and comprises three dimensions: medical-technical competence, identity-orientation approach and physical-technical conditions. Context-specific scales containing four aspects (competence, continuity, coordination/ cooperation, availability) were added. The instrument contains two response scales; perceived reality (PR) and subjective importance (SI). Data were analysed by descriptive statistics, Chi-squared test, T-test and Wilcoxon's signed rank test. Results: Patients had high mean scores on the PR-scale for the sense of security in palliative homecare in the dimensions of medical-technical competence and physical-technical conditions. There were three low mean scores on the PR-scale: the aspect of continuity from patients and the aspects of continuity and coordination/cooperation from relatives. The patients scored the SI scale statistically significantly higher than the PR scale in the identity-orientation approach dimension and in the aspect of continuity, while relatives did so in all dimensions and aspects. The intra-dyadic patient-relative comparisons show statistically significant lower scores from relatives on the PR-scale in the dimensions of medical-technical competence, physical-technical conditions, identity-orientation approach and the aspect coordination/cooperation. Conclusions: There are several statistically significant differences between patients and relatives' perceptions of security in the palliative homecare received (PR) compared with the subjective importance of the care (SI) and statistically significant differences in the patient-relative dyads in PR. A relatively mutual sense of security in palliative homecare is important for patient-relative dyads, as relatives often provide care and act as patients' spokespersons. What they assess as important can guide the development of palliative homecare.

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“…Exploring what care users find important aspects of good-quality palliative care and relating this to their actual experiences may provide a more valid picture and may also provide insight into the care aspects where quality improvements are most needed. For this reason, Heins et al (2018) performed a survey study using parts of the Palliative Care Consumer Quality Index [9] in which advanced cancer patients’ actual care experiences were compared to the ratings they gave for the importance of 13 items regarding information provision, respect for their autonomy and support when suffering from pain or other symptoms [10]. Seventy-two home-dwelling Dutch patients with advanced cancer participated, and almost all rated all 13 items as important.…”

Section: Introductionmentioning

confidence: 99%

“…In general, the palliative care that patients received matched with what they considered as important. However, improvements could be made in the provision of support to patients suffering from fatigue and in the provision of information on the expected course of patients’ illness [10]. A limitation of this quantitative survey was, however, that respondents had limited opportunities to give in depth-information about their perspectives or to mention new topics that are also important to them.…”

Section: Introductionmentioning

confidence: 99%

What are essential elements of high-quality palliative care at home? An interview study among patients and relatives faced with advanced cancer

et al. 2019

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BackgroundIn the Netherlands, general practitioners (GPs) and community nurses play a central role in the palliative care for home-dwelling patients with advanced cancer and their relatives. To optimize the palliative care provision at home, it is important to have insight in the elements that patients and relatives consider essential for high-quality palliative care, and whether these essentials are present in the actual care they receive.MethodsQualitative semi-structured interviews were conducted with 13 patients with advanced cancer and 14 relatives. The participants discussed their experiences with the care and support they received from the GP and community nurses, and their views on met and unmet needs. Interview data were analysed according to the principles of thematic analysis.ResultsPatients as well as relatives considered it important that their GP and community nursing staff are medically proficient, available, person-focused and proactive. Also, proper information transfer between care professionals and clear procedures when asking for certain resources or services were considered essential for good palliative care at home. Most interviewees indicated that these essential elements were generally present in the care they received. However, the requirements of ‘proper information transfer between professionals’ and ‘clear and rapid procedures’ were mentioned as more difficult to meet in actual practice. Patients and relatives also emphasized that an alert and assertive attitude on their own part was vital in ensuring they received the care they need. They expressed worries about other people who are less vigilant regarding the care they receive, or who have no family to support them in this.ConclusionsMedical proficiency, availability, a focus on the person, proper information transfer between professionals, clear procedures and proactivity on the part of GPs and community nursing staff are considered essential for good palliative care at home. Improvements are particularly warranted with regard to collaboration and information transfer between professionals, and current bureaucratic procedures. It is important for care professionals to ensure that the identified essential elements for high-quality palliative care at home are met, particularly for patients and relatives who are not so alert and assertive.

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Palliative care for patients with cancer: do patients receive the care they consider important? A survey study

Cited by 18 publications

References 27 publications

Impact, challenges and limits of inpatient palliative care consultations – perspectives of requesting and conducting physicians

Impact, challenges and limits of inpatient palliative care consultations – perspectives of requesting and conducting physicians

A sense of security in palliative homecare in a Norwegian municipality; dyadic comparisons of the perceptions of patients and relatives - a quantitative study

What are essential elements of high-quality palliative care at home? An interview study among patients and relatives faced with advanced cancer

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