Bregje Thoonsen

Defining the palliative care patient: A systematic review

Background: The lack of a clear definition of the palliative care patient hampers the comparison of results across different studies and impedes implementation of research findings in everyday practice. Aim: The aim of this article is to propose minimum characteristics that define a palliative care patient. Design: The design involved a systematic review of medical literature searching randomised controlled trials (RCTs) in palliative care for clear descriptions of their palliative care patients. We systematically describe relevant characteristics of the study populations of 60 eligible RCTs. Data sources: The data sources used were MEDLINE, EMBASE, CINAHL, and PSYCHINFO, including all non-cancer RCTs (1 January 1995–4 March 2010) and an equivalent number of the most recent cancer RCTs (1 January 2003–4 March 2010). Results: Half of the non-cancer studies were excluded because they did not relate to palliative care. We conclude that published RCTs have no clear definitions of their palliative care patients and illustrate the diversity of this patient, the lack of consensus concerning the attributes of illnesses needing palliation and the ambiguous use of the adjective ‘palliative’. Conclusions: We propose elements of the patients’ health status (e.g. a progressive, life-threatening disease with no possibility of obtaining remission or stabilisation, or modifying the course of the illness) and the care delivered to them (e.g. a holistic interdisciplinary approach that focuses on supporting the quality of the end of life) to be included in the definition of a palliative care patient. We also suggest considering the patients’ readiness to accept palliative care and a vision of palliative care shared by the patient and all caregivers involved as potentially important elements in this definition.

Early identification of palliative care patients in general practice: development of RADboud indicators for PAlliative Care Needs (RADPAC)

BACKGROUND According to the World Health Organization (WHO) definition, palliative care should be initiated in an early phase and not be restricted to terminal care. In the literature, no validated tools predicting the optimal timing for initiating palliative care have been determined. AIM The aim of this study was to systematically develop a tool for GPs with which they can identify patients with congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), and cancer respectively, who could benefit from proactive palliative care. DESIGN A three-step procedure, including a literature review, focus group interviews with input from the multidisciplinary field of palliative healthcare professionals, and a modified Rand Delphi process with GPs. METHOD The three-step procedure was used to develop sets of indicators for the early identification of CHF, COPD, and cancer patients who could benefit from palliative care. RESULTS Three comprehensive sets of indicators were developed to support GPs in identifying patients with CHF, COPD, and cancer in need of palliative care. For CHF, seven indicators were found: for example, frequent hospital admissions. For COPD, six indicators were found: such as, Karnofsky score ≤50%. For cancer, eight indicators were found: for example, worse prognosis of the primary tumour. CONCLUSION The RADboud indicators for PAlliative Care Needs (RADPAC) is the first tool developed from a combination of scientific evidence and practice experience that can help GPs in the identification of patients with CHF, COPD, or cancer, in need of palliative care. Applying the RADPAC facilitates the start of proactive palliative care and aims to improve the quality of palliative care in general practice.

Early identification of and proactive palliative care for patients in general practice, incentive and methods of a randomized controlled trial

BackgroundAccording to the Word Health Organization, patients who can benefit from palliative care should be identified earlier to enable proactive palliative care. Up to now, this is not common practice and has hardly been addressed in scientific literature. Still, palliative care is limited to the terminal phase and restricted to patients with cancer. Therefore, we trained general practitioners (GPs) in identifying palliative patients in an earlier phase of their disease trajectory and in delivering structured proactive palliative care. The aim of our study is to determine if this training, in combination with consulting an expert in palliative care regarding each palliative patients tailored care plan, can improve different aspects of the quality of the remaining life of patients with severe chronic diseases such as chronic obstructive pulmonary disease, congestive heart failure and cancer.Methods/DesignA two-armed randomized controlled trial was performed. As outcome variables we studied: place of death, number of hospital admissions and number of GP out of hours contacts.DiscussionWe expect that this study will increase the number of identified palliative care patients and improve different aspects of quality of palliative care. This is of importance to improve palliative care for patients with COPD, CHF and cancer and their informal caregivers, and to empower the GP. The study protocol is described and possible strengths and weaknesses and possible consequences have been outlined.Trial RegistrationThe Netherlands National Trial Register: NTR2815

Spirituality in palliative home care: a framework for the clinician

PurposeSpiritual care at the end of life remains poorly understood despite its promotion by the World Health Organisation. The purpose of this paper was to develop a consensus-based framework of the main elements of spiritual care in palliative home care.MethodsExpert meeting using the nominal group technique, followed by a two-stage web-based Delphi process, was used. Experts from three stakeholder groups (physicians, professional spiritual care givers and researchers) representing two countries (Belgium and the Netherlands) participated in this study.ResultsFourteen elements of spiritual care were retained: (1) being sensitive to patient’s fear of the dying process; (2) listening to the patient’s expectations and wishes about the end of life; (3) giving attention to patient’s wishes about the design of the farewell; (4) offering rituals if the patient experiences them as meaningful; (5) listening to the stories, dreams and passions of the patient; (6) helping the patient find strength in inner resources; (7) connecting with the patient in truth, openness and honesty; (8) supporting communication and quality of relationships; (9) making sure the patient feels comfortable and safe; (10) seeing spirituality as an interwoven, though specific dimension; (11) caring for your own spirituality; (12) knowing and accepting your vulnerability; (13) being able to learn from your patient; and (14) having an interdisciplinary team that is there when needed.ConclusionsThe experts agreed to the 14 main elements of spiritual care in palliative home care. There were no differences in this regard between the stakeholder groups. This study provides a first step towards the development of an interdisciplinary spiritual care model in palliative home care.

Outcome measures of spiritual care in palliative home care: a qualitative study.

The purpose of this study was to identify key outcome measures of spiritual care in palliative home care. A qualitative study was conducted with experts from 3 stakeholder groups (physicians, professional spiritual caregivers, and researchers) representing 2 countries (Belgium and The Netherlands). Three key outcome measures were identified: the extent to which the patient feels that he or she is being heard and taken seriously, the extent to which the patient experiences that there is a place for that which is insoluble, and the extent to which the patient experiences that there is a place for that which cannot be said. Further research is needed to implement and evaluate these new outcome measures.

Timely identification of palliative patients and anticipatory care planning by GPs: practical application of tools and a training programme

BackgroundPalliative care is mainly restricted to terminal care. General practitioners (GPs) are not trained to early identify palliative patients with cancer, COPD or heart failure. With the help of the RADboud indicators for PAlliative Care needs (RADPAC), we trained GPs to identify patients’ needs and to make a proactive care plan. They were also able to join two role-plays where they discussed the patient’s future, and consulted a palliative care consultant to fine-tune the care plan. We evaluated the programme with the GPs and consultants and noted its impact on their daily practice.MethodsTwo years after they had participated in the programme, we held semi-structured interviews with the GPs and a focus group interview with the consultants and performed a thematic content analysis.ResultsSix consultants and nine GPs participated in the programme. Most GPs and consultants mentioned positive changes in the thinking or acting of GPs regarding early palliative care. A number continued to use the tool to identify patients; most of the others noted they had internalised the indicators. Although half of them still considered discussing end-of-life aspects difficult, particularly in patients with organ failure, the others were more easily able to discuss the future with their palliative patients.ConclusionAlthough most GPs and consultants were positive about the training programme and applying it in daily practice, we conclude that in future programmes, more attention needs to paid to timely identification of palliative patients with COPD or CHF and how to discuss the future with them.

Training general practitioners contributes to the identification of palliative patients and to multidimensional care provision: secondary outcomes of an RCT

Introduction To support general practitioners (GPs) in providing early palliative care to patients with cancer, chronic obstructive pulmonary disease or heart failure, the RADboud university medical centre indicators for PAlliative Care needs tool (RADPAC) and a training programme were developed to identify such patients and to facilitate anticipatory palliative care planning. We studied whether GPs, after 1 year of training, identified more palliative patients, and provided multidimensional and multidisciplinary care more often than untrained GPs. Methods We performed a survey 1 year after GPs in the intervention group of an RCT were trained. With the help of a questionnaire, all 134 GPs were asked how many palliative patients they had identified, and whether anticipatory care was provided. We studied number of identified palliative patients, expected lifetime, contact frequency, whether multidimensional care was provided and which other disciplines were involved. Results Trained GPs identified more palliative patients than did untrained GPs (median 3 vs 2; p 0.046) and more often provided multidimensional palliative care (p 0.024). In both groups, most identified patients had cancer. Conclusions RADPAC sensitises GPs in the identification of palliative patients. Trained GPs more often provided multidimensional palliative care. Further adaptation and evaluation of the tools and training are necessary to improve early palliative care for patients with organ failure. Trial registration number NTR2815; post results.

Consultatie bij palliatieve zorg

SamenvattingConsultatie is sinds het Nederlandse stimuleringsprogramma palliatieve zorg (1996-2003) een sleutelbegrip bij de ondersteuning van zorgverleners die werken in de palliatieve zorg. Geredeneerd vanuit een van de uitgangspunten die de landelijke overheid hanteert – palliatieve

Vroegtijdige herkenning van palliatieve patiënten

SamenvattingThoonsen B, Vissers K, Verhagen S, Prins J, Bor H, Van Weel C, Groot M, Engels Y. Vroegtijdige herkenning van palliatieve patiënten. Huisarts Wet 2016;59(5):194-8.AchtergrondHuisartsen zijn de aangewezen professionals om vroege palliatieve zorg te coördineren. Maar hoe herken je tijdig patiënten die hiervoor in aanmerking komen en hoe structureer je anticiperende palliatieve zorg? Om deze vragen te beantwoorden hebben we een training ontwikkeld voor huisartsen en onderzochten we het effect daarvan op contacten met de huisartsenpost (HAP) en de eigen huisarts, het aantal ziekenhuisopnamen en de plaats van overlijden.MethodeWe kozen voor een clustergerandomiseerd, gecontroleerd onderzoek. We trainden huisartsen in de interventieconditie in het tijdig herkennen van palliatieve patiënten en in anticiperende palliatieve zorgplanning. Daarnaast boden we de huisarts voor iedere als palliatief aangemerkte patiënt een coachingsessie met een consulent palliatieve zorg aan, om het zorgplan af te stemmen. De huisartsen konden een communicatietraining volgen. Huisartsen in de controlegroep vroegen we gebruikelijke zorg te verlenen. Na een jaar hebben we de karakteristieken van patiënten die in dat jaar overleden waren aan kanker, COPD of hartfalen uit beide condities met elkaar vergeleken op contacten met de huisartsenpost en met hun eigen huisarts in de laatste maand voor overlijden, alsmede het aantal ziekenhuisopnamen in de laatste drie maanden voor overlijden en de plaats van overlijden. Als post-hocanalyse hebben we palliatieve patiënten van de interventieconditie vergeleken met alle andere overleden patiënten. Voor deze analyses hebben we mixed-models gebruikt.ResultatenWe vonden geen verschillen tussen de interventie- en controleconditie. Slechts 24% van de overleden patiënten uit de interventiegroep was echter in het voorafgaande jaar aangewezen als palliatief. De als palliatief aangemerkte patiënten hadden significant meer contacten met hun eigen huisarts (p = 0,0006), waren minder vaak in het ziekenhuis opgenomen (OR 0,485; p = 0,0437), overleden vaker thuis (OR 2,126; p = 0,0572) en minder vaak in het ziekenhuis (OR 0,380; p = 0,0449).ConclusieDe als palliatief aangemerkte patiënten hadden vaker contact met hun huisarts, werden minder vaak in het ziekenhuis opgenomen en overleden vaker thuis. Een groot deel van de overleden patiënten was echter nooit als palliatief herkend. Meer aandacht is nodig voor methoden om tijdig meer palliatieve patiënten te ontdekken.