The diverse impact of advance care planning: a long-term follow-up study on patients’ and relatives’ experiences

Andreassen, Pernille; Neergaard, Mette Asbjoern; Brogaard, Trine; Skorstengaard, Marianne Hjorth; Jensen, Anders Bonde

doi:10.1136/bmjspcare-2015-000886

Cited by 19 publications

(33 citation statements)

References 20 publications

(20 reference statements)

Supporting

Mentioning

Contrasting

Order By: Relevance

“…ACP is a process aimed at timely involvement of patients and their relatives in decision-making on future (palliative) care, including EOL care [21]. Although ACP aims at timely involvement, it is often not initiated early enough in daily clinical practice, because of barriers in physicians and patients’ behavior, and the organizational (e.g., ACP documentation not being available at the appropriate time) and legal context [22].…”

Section: Patient Participation In Decision-making and Acpmentioning

confidence: 99%

“…Two studies, the first one including elderly patients and the second one including patients with congestive heart failure or end-stage renal disease, have shown that patients who participated in ACP discussions appreciated having such discussions [24,25]. However, other studies have reported that not all patients prefer to participate in ACP discussions [21,26,27]. Barnes et al showed that although most palliative care and oncology participants appreciated ACP discussions, some were not ready for it yet [26].…”

Section: Patient Participation In Decision-making and Acpmentioning

confidence: 99%

“…Barnes et al showed that although most palliative care and oncology participants appreciated ACP discussions, some were not ready for it yet [26]. Likewise, Andreassen et al found that patients experienced participating in ACP discussions differently; some patients felt more relieved, more confident and in control, while other patients found ACP not relevant or were of the opinion that their wishes would not be met [21]. …”

Section: Patient Participation In Decision-making and Acpmentioning

confidence: 99%

See 2 more Smart Citations

Advance Care Planning in Glioblastoma Patients

Fritz

Dirven

Reijneveld

et al. 2016

Cancers

View full text Add to dashboard Cite

Despite multimodal treatment with surgery, radiotherapy and chemotherapy, glioblastoma is an incurable disease with a poor prognosis. During the disease course, glioblastoma patients may experience progressive neurological deficits, symptoms of increased intracranial pressure such as drowsiness and headache, incontinence, seizures and progressive cognitive dysfunction. These patients not only have cancer, but also a progressive brain disease. This may seriously interfere with their ability to make their own decisions regarding treatment. It is therefore warranted to involve glioblastoma patients early in the disease trajectory in treatment decision-making on their future care, including the end of life (EOL) care, which can be achieved with Advance Care Planning (ACP). Although ACP, by definition, aims at timely involvement of patients and proxies in decision-making on future care, the optimal moment to initiate ACP discussions in the disease trajectory of glioblastoma patients remains controversial. Moreover, the disease-specific content of these ACP discussions needs to be established. In this article, we will first describe the history of patient participation in treatment decision-making, including the shift towards ACP. Secondly, we will describe the possible role of ACP for glioblastoma patients, with the specific aim of treatment of disease-specific symptoms such as somnolence and dysphagia, epileptic seizures, headache, and personality changes, agitation and delirium in the EOL phase, and the importance of timing of ACP discussions in this patient population.

show abstract

Section: Patient Participation In Decision-making and Acpmentioning

confidence: 99%

Section: Patient Participation In Decision-making and Acpmentioning

confidence: 99%

Section: Patient Participation In Decision-making and Acpmentioning

confidence: 99%

See 1 more Smart Citation

Advance Care Planning in Glioblastoma Patients

Fritz

Dirven

Reijneveld

et al. 2016

Cancers

View full text Add to dashboard Cite

show abstract

“…It can be summarized as systematically organized and ongoing 'process of communication to ensure that patients receive medical care that is consistent with their values, goals and preferences during serious and chronic illness' [7]. Its goal is involvement of patients in decision-making on (future) care before these patients become cognitively and communicatively incapable to do so [8,9].…”

Section: Introductionmentioning

confidence: 99%

Advance care planning in progressive neurological diseases: lessons from ALS

et al. 2019

View full text Add to dashboard Cite

Background: There is increasing awareness of the need for an integrated palliative care approach in chronic progressive neurological diseases. Advance care planning (ACP) is an integral part of this approach. As a systematically organized and ongoing communication process about patients' values, goals and preferences regarding medical care during serious and chronic illness, ACP aims to involve patients in decision-making before they become cognitively and communicatively incapable. However, it remains underutilized in daily neurological practice except for speciality clinics such as ALS centers. Our aim was to study ACP in the tertiary ALS center Amsterdam and to investigate patients' reflections on it. Subsequently we used this knowledge to formulate recommendations for integration of ACP in the care of patients with other chronic progressive neurological diseases. Methods: Non-participating observations of all appointments of patients with amyotrophic lateral sclerosis (ALS) or progressive muscular atrophy (PMA) with the treating physician, in various stages of disease, during 6 consecutive months, followed by single in-depth interviews, and an inductive analysis. Results: Twenty-eight Dutch patients participated, varying in age, gender, disease onset and severity of physical decline. ACP started directly when the diagnosis was given, by means of a general outlook on the future with progressive disability and immediate introduction to a customized multidisciplinary team. During follow-up ACP was realized by regular appointments in which monitoring of the patient's status and clear communication strategies formed the basis of tailor-made discussions on treatment options. Patients accepted this policy as careful professional guidance. Conclusions: ACP is a professional communication process throughout the whole course of progressive disease. It is feasible to integrate ACP into follow-up of patients with ALS and PMA from diagnosis onwards. Supported by recent literature, we argue that such a well-structured approach would also enhance the quality of care and life of patients with other chronic progressive neurological diseases.

show abstract

“…Through different phases of a disease, every patient is entitled to receive understandable information, to be given the opportunity to ask questions and to discuss his/her prognosis and medical condition (Walczak, Butow, Bu, & Clayton, ; Worldwide Palliative Care Alliance, ). This is equally important in the approach towards death so that the patient has opportunity both to express his/her individual preferences regarding care and treatment as well as to achieve as high a quality of life as possible, even when close to death (Andreassen, Neergaard, Brogaard, Skorstengaard, & Jensen, ; Schou‐Andersen, Ullersted, Jensen, & Neergaard, ). However, numerous studies show that communication between physicians and patients in general is not optimal, despite the fact that both patients and their families find communication about, for example, prognosis to be one of the most important aspects of care at the end of life (Diamond, Corner, De Rosa, Breitbart, & Applebaum, ; Evans et al., ; Horlait, Chambaere, Pardon, Deliens, & Van Belle, ; Nedjat‐Haiem et al., ; Winner, Wilson, Yahanda, Gani, & Pawlik, ).…”

Section: Introductionmentioning

confidence: 99%

Palliative care physicians’ experiences of end-of-life communication: A focus group study

et al. 2017

View full text Add to dashboard Cite

The aim of this study was to explore palliative home care physicians' experiences regarding end-of-life breakpoint communication (BPC). This is a qualitative study where focus group interviews were conducted and analysed using qualitative content analysis. The results show that the participants saw themselves as being responsible for accomplishing BPC, and they were convinced that it should be regarded as a process of communication initiated at an early stage, i.e. proactively. However, BPC was often conducted as a reaction to the patient's sudden deterioration or sometimes not at all.The barriers to achieving proactive BPC included physicians' uncertainty regarding the timing of BPC, primarily due to difficulties in prognostication in terms of time of death, and uncertainty as to what BPC should include and how it should best be approached.Furthermore, there was insufficient documentation regarding previous BPC, which impeded proactive BPC. Although our study shows that physicians are ambitious when it comes to the communication of information to patients and families, there is a need for further training in how to conduct BPC and when to initiate the BPC process.Furthermore, there should be documentation that different professionals can access as this would appear to facilitate a proactive BPC process. K E Y W O R D Scommunication, end of life, palliative care, physicians | INTRODUCTIONPalliative care should be introduced early in the disease trajectory to enable advanced care planning, thus affirming life and resulting in dying being regarded as a natural part of life (WHO, 2002). Planning endof-life care involves communication among professionals and patients and often the patient's family. Through different phases of a disease, every patient is entitled to receive understandable information, to be given the opportunity to ask questions and to discuss his/her prognosis and medical condition (Walczak, Butow, Bu, & Clayton, 2016; Worldwide Palliative Care Alliance, 2014). This is equally important in the approach towards death so that the patient has opportunity both to express his/her individual preferences regarding care and treatment as well as to achieve as high a quality of life as possible, even when Despite the studies highlighting the importance of communicating information regarding deterioration in a timely manner, this often does not happen. For BPC to be initiated and for the patient to be given the opportunity to communicate with the physician providing the treatment, more needs to be learnt about this specific type of communication. The physician is medically responsible for providing a diagnosis when disease-directed treatment is unlikely to prolong life and when palliative end-of-life care is optimal. Since the responsibility includes communicating this information, it is important to explore the physicians' experiences of BPC so as to understand their view of the process and so as to learn how BPC can be supported and initiated. | AIMThe aim of this study was to explore palliative home care...

show abstract

The diverse impact of advance care planning: a long-term follow-up study on patients’ and relatives’ experiences

Cited by 19 publications

References 20 publications

Advance Care Planning in Glioblastoma Patients

Advance Care Planning in Glioblastoma Patients

Advance care planning in progressive neurological diseases: lessons from ALS

Palliative care physicians’ experiences of end-of-life communication: A focus group study

Contact Info

Product

Resources

About