Did you seek assistance for writing your advance directive? A qualitative study

Becker, Matthias; Jaspers, Birgit; King, Claudius; Radbruch, Lukas; Voltz, Raymond; Nauck, Friedemann

doi:10.1007/s00508-010-1470-6

Cited by 14 publications

(21 citation statements)

References 24 publications

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“…Besides the family, the physicians play an important role regarding ADs [14,15]. 22% of patients with ADs were supported by their family physician, and 4% by their specialist physician.…”

Section: Discussionmentioning

confidence: 99%

Cancer Patients and Advance Directives: A Survey of Patients in a Hematology and Oncology Outpatient Clinic

Hubert¹,

Schulte²,

Belle³

et al. 2013

Oncol Res Treat

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Background: In 2009, Germany enacted a new law supporting advance directives that led to heated discussions in the media and the public. 3 years after the law passed, we surveyed patients with malignant diseases with regards to their views on advance directives. Patients and Methods: Between September 2011 and July 2012 an anonymous survey on advance directives was conducted among 617 patients at the hematology and oncology outpatient department of the University Hospital Mannheim, using a standardized questionnaire developed for this investigation. Results: Of the 503 patients who returned the questionnaire, 31% (n = 157) indicated having an advance directive. Of these 157, 54% (n = 85) completed the advance directive after 2009. 56% (282 out of 503) desired more information on advance directives. Of these, 71% (201 out of 282) wanted their general physician and 45% (128 out of 282) their specialist, to provide more information about this issue. Of the 339 patients without an advance directive, 47% (n = 158) stated that they had ‘not worried about that yet'. Conclusion: Although the percentage of patients with advance directives has increased since the legislative amendment, more information is still required by patients. It is recommended that physicians should discuss advance directives more frequently with their patients.

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“…Besides the family, the physicians play an important role regarding ADs [14,15]. 22% of patients with ADs were supported by their family physician, and 4% by their specialist physician.…”

Section: Discussionmentioning

confidence: 99%

Cancer Patients and Advance Directives: A Survey of Patients in a Hematology and Oncology Outpatient Clinic

Hubert¹,

Schulte²,

Belle³

et al. 2013

Oncol Res Treat

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“…5), whereas only few patients without completed ADs asked for legal consultation. This indicates that socioeconomic factors or personality traits such as safety needs might play a role in the patients' preferences for AD consultation [26]. …”

Section: Discussionmentioning

confidence: 99%

The Impact of a Tumor Diagnosis on Patients' Attitudes toward Advance Directives

et al. 2014

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Background: Although advance care planning and the completion of advance directives (ADs) are important tools to avoid unwanted aggressive care once patients have lost their decision-making capacity, only a minority of cancer patients are admitted with completed ADs, and little is known about patients' wishes regarding AD consultations. Methods: For 1 year, every new patient admitted to the hematology/oncology outpatient clinic of the University Hospital Regensburg received a self-administered questionnaire comprising a self-evaluation of AD knowledge and questions about preferences regarding consultation partners and the time of consultation. Disease-related data were collected from medical records. Statistics were calculated with SPSS. Results: Of the 500 questionnaires handed out, 394 (75%) were evaluable and analyzed. Twenty-eight percent of the participants had completed an AD (living will or health care proxy). Ninety-two percent of the participants without ADs had never received a consultation offer from any professional involved. Only 20% perceived a clear relation between cancer and AD consultations. More than 50% of the participants without ADs were in favor of consultations ‘now' or ‘in a few weeks', while more than 40% objected to AD consultations. Conclusions: Oncology patients have a large unmet demand for AD consultations. However, a relevant percentage of these patients object to AD consultations. Structured and early AD consultation offers should be made, and early discussions about indications for aggressive treatment should take place.

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“…Some cases, in which the patient’s family or proxy went to court to fight for these rights, showed that neither clinical practice nor decisions taken in local German courts were consistently in accordance with this judgment [3]. Therefore, the need for an explicit legal regulation on ADs became subject to a long public, political, judicial and medical debate, resulting in new legislation enacted in 2009.…”

Section: Introductionmentioning

confidence: 99%

To what extent are the wishes of a signatory reflected in their advance directive: a qualitative analysis

Nauck¹,

Becker

King³

et al. 2014

BMC Med Ethics

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BackgroundAdvance directives (ADs) are assumed to reflect the patients’ preferences, even if these are not clearly expressed. Research into whether this assumption is correct has been lacking. This study explores to what extent ADs reflect the true wishes of the signatories.MethodsSemi-structured interviews (INT), pretest. Transcribed INT and the contents of ADs were inductively categorised (Mayring) and triangulated. Software: MAXQDA 2007. Participants: Patients receiving palliative care (PPC), healthy (H) and chronically ill (CI) individuals with an AD completed ≥3 months prior to recruitment.ResultsBetween 08/2008 and 07/2009, 53 individuals (20 H, 17 CI, 16 PPC) were interviewed (mean age 63.2 years (55–70 years)), 34% male). Most important (in)consistencies between preferences as expressed in INT compared to ADs included preconditions for termination/rejection of life-sustaining measures, refusal of/demand for medical interventions and the nomination of proxies. Standardized AD forms were rarely tailored to the individual. We found a high tendency to use set phrases, such as want to die with dignity or do not want to suffer/vegetate. Likely events in the course of an existing progressive disease were not covered, even in ADs of PPC close to death.ConclusionsOnly some of the incongruities between verbally expressed preferences and the contents of the AD can be put down to use of standardized forms or lack of medical knowledge. Nevertheless, the non-involvement of a doctor in the process of making an AD must be seen as potentially problematic and seeking medical advice should be promoted by politics and physicians. Standardised forms should encourage amendments and present space for free text entries for all aspects covered. Set phrases need to be defined by the individual to enable them to be translated into a specific course of action.

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Did you seek assistance for writing your advance directive? A qualitative study

Cited by 14 publications

References 24 publications

Cancer Patients and Advance Directives: A Survey of Patients in a Hematology and Oncology Outpatient Clinic

Cancer Patients and Advance Directives: A Survey of Patients in a Hematology and Oncology Outpatient Clinic

The Impact of a Tumor Diagnosis on Patients' Attitudes toward Advance Directives

To what extent are the wishes of a signatory reflected in their advance directive: a qualitative analysis

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