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People with dementia may benefit from palliative care which specifically addresses the needs of patients and families affected by this life-limiting disease. On behalf of the European Association for Palliative Care (EAPC), we recently performed a Delphi study to define domains for palliative care in dementia and to provide recommendations for optimal care. An international panel of experts in palliative care, dementia care or both, achieved consensus on almost all domains and recommendations, but the domain concerning the applicability of palliative care to dementia required revision.
To examine in detail, the opinions of the international panel of 64 experts around the applicability of palliative care, we explored feedback they provided in the Delphi process. To examine which experts found it less important or less applicable, ordinal regression analyses related characteristics of the panelists to ratings of overall importance of the applicability domain, and to agreement with the domain's four recommendations.
Some experts expressed concerns about bringing up end-of-life issues prematurely and about relabeling dementia care as palliative care. Multivariable analyses with the two outcomes of importance and agreement with applicability indicated that younger or less experienced experts and those whose expertise was predominantly in dementia care found palliative care in dementia less important and less applicable.
Benefits of palliative care in dementia are acknowledged by experts worldwide, but there is some controversy around its early introduction. Further studies should weigh concerns expressed around care receiving a “palliative” label versus the benefits of applying palliative care early.
Dementia involves a progressive decline in many functional areas. Policy and practice guidelines should cover the entire course of the disease from early detection to the end-of-life. The present study aimed to evaluate the contents of national dementia strategies with a focus on palliative care content.
We employed qualitative content analyses. Sixteen national dementia strategies from 14 countries were reviewed. Using open coding, the contents were compared to the domains and recommendations of the palliative care in dementia white paper of the European Association for Palliative Care (EAPC).
Although palliative care was not explicitly referred to in eight of the 14 countries and only to a limited extent in three countries, a number of domains from the EAPC white paper were well represented, including “person-centered care, communication, and shared decision making”; “continuity of care”; and “family care and involvement.” Three countries that referred to palliative care did so explicitly, with two domains being well represented: “education of the health care team”; and “societal and ethical issues.” The strategies all lacked reference to the domain of “prognostication and timely recognition of dying” and to spiritual caregiving.
National dementia strategies cover part of the recent definition of palliative care in dementia, although they do not frequently label these references as “palliative care.” In view of the growing numbers of people dying with dementia, preparation for the last phase of life should be added to national strategies.
Reliable and validated instruments are needed in order to study the desire for hastened death (DHD). As there is no instrument in the German language to measure DHD, our aim was to validate a German version of the Schedule of Attitudes Toward Hastened Death (SAHD–D).
The SAHD was translated following guidelines promulgated by the European Organization for Research and Treatment of Cancer (EORTC). In eligible patients (clinical situation adequate, MMSE ≥21), the following instruments were employed: a symptom checklist (HOPE), the HADS–D (Hospital Anxiety and Depression Scale), the EORTC-QLQ-PAL15, and the SAHD–D, as well as an external estimation of DHD provided by the attending physician. A high level of DHD was defined as the mean plus one standard deviation (SD).
Of the 869 patients assessed, 92 were eligible for inclusion (66% females, mean age of 64.5 years). The SAHD–D total score ranged from 0 to 18, with a mean of 5 and a standard deviation (SD) of 3.7. A high level of DHD was found in 20% (n = 19). For discriminant validity, significant correlations were found between the SAHD–D and depression (rrho = 0.472), anxiety (rrho = 0.224), and clinical state (rrho = 0.178). For criterion validity, the external estimate of DHD showed a low significant correlation with patient score (rrho = 0.290). Factor analysis of the SAHD–D identified two factors.
Significance of results:
Validation of the SAHD–D illustrated good discriminant validity, confirming that a desire to hasten death is a construct separate from depression, anxiety, or physical state. The unidimensionality of the SAHD could not be reproduced. Our findings support the multifactorial interdependencies on DHD and suggest that the SAHD–D should be refined by considering actual wishes, general attitudes, and options of patients.
It is not easy to determine whether the use of anticoagulants in patients with far advanced and incurable disease is good palliative care or not. Most palliative care specialists will follow standard procedures in their units for the handling of thrombosis or pulmonary embolism. However, when the subject comes to discussion in international meetings, vast differences are found. Some palliative care professionals will reject the use of anticoagulants as life-prolonging but otherwise useless measures, and consider death from pulmonary embolism as part of the natural course of the malignant disease. Others will hold that anticoagulant therapy is necessary to relieve symptoms such as pain and swelling from deep vein thrombosis or prevent dyspnea from pulmonary embolism. In our palliative care unit in the University of Cologne, standard procedures for bedridden patients include regular application of low molecular-weight heparin.
There is no doubt that the incidence of deep vein thrombosis is high among cancer patients. Thromboembolic episodes were reported for approximately 15% of cancer patients. The incidence seems to be higher for pancreatic and gastric cancer and especially high for patients with lung cancer with an incidence of up to 30%. Pulmonary embolism and deep vein thrombosis have been found in even higher incidences in a large series of necropsies, and again cancer of the peritoneal cavity was correlated with particularly high incidences. Impediment of venous drainage from the lower limbs by these cancers has been proposed as the reason for these high incidences.
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