Content analysis of Advance Directives completed by patients with advanced cancer as part of an Advance Care Planning intervention : insights gained from the ACTION trial

Purpose Writing an Advance Directive (AD) is often seen as a part of Advance Care Planning (ACP). ADs may include specific preferences regarding future care and treatment and information that provides a context for healthcare professionals and relatives in case they have to make decisions for the patient. The aim of this study was to get insight into the content of ADs as completed by patients with advanced cancer who participated in ACP conversations. Methods A mixed methods study involving content analysis and descriptive statistics was used to describe the content of completed My Preferences forms, an AD used in the intervention arm of the ACTION trial, testing the effectiveness of the ACTION Respecting Choices ACP intervention. Results In total, 33% of 442 patients who received the ACTION RC ACP intervention completed a My Preferences form. Document completion varied per country: 10.4% (United Kingdom), 20.6% (Denmark), 29.2% (Belgium), 41.7% (the Netherlands), 61.3% (Italy) and 63.9% (Slovenia). Content analysis showed that 'maintaining normal life' and 'experiencing meaningful relationships' were important for patients to live well. Fears and worries mainly concerned disease progression, pain or becoming dependent. Patients hoped for prolongation of life and to be looked after by healthcare professionals. Most patients preferred to be resuscitated and 44% of the patients expressed maximizing comfort as their goal of future care. Most patients preferred 'home' as final place of care. Conclusions My Preferences forms provide some insights into patients' perspectives and preferences. However, understanding the reasoning behind preferences requires conversations with patients

Content analysis of Advance Directives completed by patients with advanced cancer as part of an Advance Care Planning intervention: insights gained from the ACTION trial

Purpose: Writing an Advance Directive (AD) is often seen as a part of Advance Care Planning (ACP). ADs may include specific preferences regarding future care and treatment and information that provides a context for healthcare professionals and relatives in case they have to make decisions for the patient. The aim of this study was to get insight into the content of ADs as completed by patients with advanced cancer who participated in ACP conversations. Methods: A mixed methods study involving content analysis and descriptive statistics was used to describe the content of completed My Preferences forms, an AD used in the intervention arm of the ACTION trial, testing the effectiveness of the ACTION Respecting Choices ACP intervention. Results: In total, 33% of 442 patients who received the ACTION RC ACP intervention completed a My Preferences form. Document completion varied per country: 10.4% (United Kingdom), 20.6% (Denmark), 29.2% (Belgium), 41.7% (the Netherlands), 61.3% (Italy) and 63.9% (Slovenia). Content analysis showed that \u2018maintaining normal life\u2019 and \u2018experiencing meaningful relationships\u2019 were important for patients to live well. Fears and worries mainly concerned disease progression, pain or becoming dependent. Patients hoped for prolongation of life and to be looked after by healthcare professionals. Most patients preferred to be resuscitated and 44% of the patients expressed maximizing comfort as their goal of future care. Most patients preferred \u2018home\u2019 as final place of care. Conclusions: My Preferences forms provide some insights into patients\u2019 perspectives and preferences. However, understanding the reasoning behind preferences requires conversations with patients

How can advance care planning support hope in patients with advanced cancer and their families: a qualitative study as part of the international ACTION trial

Objective Clinicians' fears of taking away patients' hope is one of the barriers to advance care planning (ACP). Research on how ACP supports hope is scarce. We have taken up the challenge to specify ways in which ACP conversations may potentially support hope. Methods In an international qualitative study, we explored ACP experiences of patients with advanced cancer and their personal representatives (PRs) within the cluster-randomised control ACTION trial. Using deductive analysis of data obtained in interviews following the ACP conversations, this substudy reports on a theme of hope. A latent thematic analysis was performed on segments of text relevant to answer the research question. Results Twenty patients with advanced cancer and 17 PRs from Italy, the Netherlands, Slovenia, and the United Kingdom were participating in post-ACP interviews. Three themes reflecting elements that provide grounds for hope were constructed. ACP potentially supports hope by being (I) a meaningful activity that embraces uncertainties and difficulties; (II) an action towards an aware and empowered position; (III) an act of mutual care anchored in commitments. Conclusion Our findings on various potentially hope supporting elements of ACP conversations provide a constructive way of thinking about hope in relation to ACP that could inform practice

Advance care planning, a multi-centre cluster randomised clinical trial: the research protocol of the ACTION study

Background: Awareness of preferences regarding medical care should be a central component of the care of patients with advanced cancer. Open communication can facilitate this but can occur in an ad hoc or variable manner. Advance care planning (ACP) is a formalized process of communication between patients, relatives and professional caregivers about patients’ values and care preferences. It raises awareness of the need to anticipate possible future deterioration of health. ACP has the potential to improve current and future healthcare decision making, provide patients with a sense of control, and improve their quality of life. Methods/Design: We will study the effects of the ACP program Respecting Choices on the quality of life of patients with advanced lung or colorectal cancer. In a phase III multicenter cluster randomised controlled trial, 22 hospitals in 6 countries will be randomised. In the intervention sites, patients will be offered interviews with a trained facilitator. In the control sites, patients will receive care as usual. In total, 1360 patients will be included. All participating patients will be asked to complete questionnaires at inclusion, and again after 2.5 and 4.5 months. If a patient dies within a year after inclusion, a relative will be asked to complete a questionnaire on end-of-life care. Use of medical care will be assessed by checking medical files. The primary endpoint is patients’ quality of life at 2.5 months ost-inclusion. Secondary endpoints are the extent to which care as received is aligned with patients’ preferences, patients’ evaluation of decision-making processes, quality of end-of-life care and cost-effectiveness of the intervention. A complementary qualitative study will be carried out to explore the lived experience of engagement with the Respecting Choices program from the perspectives of patients, their Personal Representatives, healthcare providers and facilitators. Discussion: Transferring the concept of ACP from care of the elderly to patients with advanced cancer, who on average are younger and retain their mental capacity for a larger part of their disease trajectory, is an important next step in an era of increased focus on patient centered healthcare and shared decision-making. Trial registration: International Standard Randomised Controlled Trial Number: ISRCTN63110516. Date of registration: 10/3/2014. Keywords: Advance care planning, Oncology, Quality of life, Medical decision-makin

Missing not at random in end of life care studies: multiple imputation and sensitivity analysis on data from the ACTION study

Background: Missing data are common in end-of-life care studies, but there is still relatively little exploration of which is the best method to deal with them, and, in particular, if the missing at random (MAR) assumption is valid or missing not at random (MNAR) mechanisms should be assumed. In this paper we investigated this issue through a sensitivity analysis within the ACTION study, a multicenter cluster randomized controlled trial testing advance care planning in patients with advanced lung or colorectal cancer. Methods: Multiple imputation procedures under MAR and MNAR assumptions were implemented. Possible violation of the MAR assumption was addressed with reference to variables measuring quality of life and symptoms. The MNAR model assumed that patients with worse health were more likely to have missing questionnaires, making a distinction between single missing items, which were assumed to satisfy the MAR assumption, and missing values due to completely missing questionnaire for which a MNAR mechanism was hypothesized. We explored the sensitivity to possible departures from MAR on gender differences between

Content analysis of Advance Directives completed by patients with advanced cancer as part of an Advance Care Planning intervention: insights gained from the ACTION trial

Purpose: Writing an Advance Directive (AD) is often seen as a part of Advance Care Planning (ACP). ADs may include specific preferences regarding future care and treatment and information that provides a context for healthcare professionals and relatives in case they have to make decisions for the patient. The aim of this study was to get insight into the content of ADs as completed by patients with advanced cancer who participated in ACP conversations. Methods: A mixed methods study involving content analysis and descriptive statistics was used to describe the content of completed My Preferences forms, an AD used in the intervention arm of the ACTION trial, testing the effectiveness of the ACTION Respecting Choices ACP intervention. Results: In total, 33% of 442 patients who received the ACTION RC ACP intervention completed a My Preferences form. Document completion varied per country: 10.4% (United Kingdom), 20.6% (Denmark), 29.2% (Belgium), 41.7% (the Netherlands), 61.3% (Italy) and 63.9% (Slovenia). Content analysis showed that ‘maintaining normal life’ and ‘experiencing meaningful relationships’ were important for patients to live well. Fears and worries mainly concerned disease progression, pain or becoming dependent. Patients hoped for prolongation of life and to be looked after by healthcare professionals. Most patients preferred to be resuscitated and 44% of the patients expressed maximizing comfort as their goal of future care. Most patients preferred ‘home’ as final place of care. Conclusions: My Preferences forms provide some insights into patients’ perspectives and preferences. However, understanding the reasoning behind preferences requires conversations with patients

Advance Care Planning in Practice: Experiences of Patients and Healthcare Professionals

For patients with advanced cancer, a period of illness and treatment precedes at the end of life. The medical treatment and care that patients receive at the end of their life should be appropriate and in concordance with their goals and preferences. Advance care planning has thus been developed to support patients in planning future medical treatment and care. It appears that patients who have participated in advance care planning are able to talk about good life and for what they are hoping. Topics that confronted patients with physical decline and end of life are more difficult to discuss. Nevertheless, patients who participated in an advance care planning conversation find these helpful and informative. Healthcare professionals are aware of the effort, but know the added value of advance care planning mainly because the patients’ perspective is discussed. Healthcare professionals experienced that conducting advance care planning conversations using a script can help to make it easier to discuss also the difficult topics with their patients. At the same time, using a script can often clash with their usual approach. Thus, training and experience can support them conduct these conversations in a way that adds value for patients. A common view is that patients must be ready for advance care planning. This study shows that "being ready" should not be seen as the starting point. Instead, it is important to be sensitive for signs of "not being ready" to discuss a particular topic, and to realize that patients are able to continue the conversation after a difficult topic

Advance Care Planning in Practice: Experiences of Patients and Healthcare Professionals

For patients with advanced cancer, a period of illness and treatment precedes at the end of life. The medical treatment and care that patients receive at the end of their life should be appropriate and in concordance with their goals and preferences. Advance care planning has thus been developed to support patients in planning future medical treatment and care. It appears that patients who have participated in advance care planning are able to talk about good life and for what they are hoping. Topics that confronted patients with physical decline and end of life are more difficult to discuss. Nevertheless, patients who participated in an advance care planning conversation find these helpful and informative. Healthcare professionals are aware of the effort, but know the added value of advance care planning mainly because the patients’ perspective is discussed. Healthcare professionals experienced that conducting advance care planning conversations using a script can help to make it easier to discuss also the difficult topics with their patients. At the same time, using a script can often clash with their usual approach. Thus, training and experience can support them conduct these conversations in a way that adds value for patients. A common view is that patients must be ready for advance care planning. This study shows that "being ready" should not be seen as the starting point. Instead, it is important to be sensitive for signs of "not being ready" to discuss a particular topic, and to realize that patients are able to continue the conversation after a difficult topic

Nurses' perspectives of a new individualized nursing care intervention for COPD patients in primary care settings : A mixed method study

Background The major challenges in Chronic Obstructive Pulmonary Disease (COPD) care are guiding a patient in daily living with the consequences of the disease, reducing the impact of symptoms and improving Health Related Quality of Life (HRQoL). The new nurse-led COPD-Guidance, Research on an Illness Perception (COPD-GRIP) intervention translates the evidence concerning illness perceptions and Health Related Quality of Life (HRQoL) into a practice nurse intervention. The aim is to explore the nurses' experiences with applying the new COPD-GRIP intervention. Method An explanatory mixed-method study nested in a cluster randomized trial in primary care was conducted. Pre-intervention questionnaires were sent to all participating nurses (N = 24) to identify expectations. Post-intervention questionnaires identified experiences after applying the intervention followed by two focus groups to further extend exploration of findings. Questionnaires were analyzed by descriptive analyses. To identify themes the audio-taped and transcribed focus groups were independently coded by two researchers. Results The nurses described the intervention as a useful, structured and individualized tool to guide COPD patients in living with the consequences of COPD. Applying the intervention took less time than the nurses initially expected. The intervention enables to provide patient-centered care and to address patient needs. Barriers were encountered, especially in patients with a lower social economic status, in patients with a lower health literacy and in patients with other cultural backgrounds than the Dutch background. Conclusion Nurses perceived the COPD-GRIP intervention as a feasible, individualized tool. According to the nurses, the intervention is a valuable improvement in the care for COPD patients