Arianne Brinkman-Stoppelenburg

The effects of advance care planning on end-of-life care: A systematic review:

Background: Advance care planning is the process of discussing and recording patient preferences concerning goals of care for patients who may lose capacity or communication ability in the future. Advance care planning could potentially improve end-of-life care, but the methods/tools used are varied and of uncertain benefit. Outcome measures used in existing studies are highly variable. Aim: To present an overview of studies on the effects of advance care planning and gain insight in the effectiveness of different types of advance care planning. Design: Systematic review. Data sources: We systematically searched PubMed, EMBASE and PsycINFO databases for experimental and observational studies on the effects of advance care planning published in 2000–2012. Results: The search yielded 3571 papers, of which 113 were relevant for this review. For each study, the level of evidence was graded. Most studies were observational (95%), originated from the United States (81%) and were performed in hospitals (49%) or nursing homes (32%). Do-not-resuscitate orders (39%) and written advance directives (34%) were most often studied. Advance care planning was often found to decrease life-sustaining treatment, increase use of hospice and palliative care and prevent hospitalisation. Complex advance care planning interventions seem to increase compliance with patients’ end-of-life wishes. Conclusion: The effects of different types of advance care planning have been studied in various settings and populations using different outcome measures. There is evidence that advance care planning positively impacts the quality of end-of-life care. Complex advance care planning interventions may be more effective in meeting patients’ preferences than written documents alone. More studies are needed with an experimental design, in different settings, including the community.

Trends in end-of-life practices before and after the enactment of the euthanasia law in the Netherlands from 1990 to 2010: a repeated cross-sectional survey

BACKGROUND In 2002, the euthanasia act came into effect in the Netherlands, which was followed by a slight decrease in the euthanasia frequency. We assessed frequency and characteristics of euthanasia, physician-assisted suicide, and other end-of-life practices in 2010, and assessed trends since 1990. METHODS In 1990, 1995, 2001, 2005, and 2010 we did nationwide studies of a stratified sample from the death registry of Statistics Netherlands, to which all deaths and causes were reported. We mailed questionnaires to physicians attending these deaths (2010: n=8496 deaths). All cases were weighted to adjust for the stratification procedure and for differences in response rates in relation to the age, sex, marital status, region of residence, and cause and place of death. FINDINGS In 2010, of all deaths in the Netherlands, 2·8% (95% CI 2·5-3·2; 475 of 6861) were the result of euthanasia. This rate is higher than the 1·7% (1·5-1·8; 294 of 9965) in 2005, but comparable with those in 2001 and 1995. Distribution of sex, age, and diagnosis was stable between 1990 and 2010. In 2010, 77% (3136 of 4050) of all cases of euthanasia or physician-assisted suicide were reported to a review committee (80% [1933 of 2425] in 2005). Ending of life without an explicit patient request in 2010 occurred less often (0·2%; 95% CI 0·1-0·3; 13 of 6861) than in 2005, 2001, 1995, and 1990 (0·8%; 0·6-1·1; 45 of 5197). Continuous deep sedation until death occurred more frequently in 2010 (12·3% [11·6-13·1; 789 of 6861]) than in 2005 (8·2% [7·8-8·6; 521 of 9965]). Of all deaths in 2010, 0·4% (0·3-0·6; 18 of 6861) were the result of the patients decision to stop eating and drinking to end life; in half of these cases the patient had made a euthanasia request that was not granted. INTERPRETATION Our study provides insight in consequences of regulating euthanasia and physician-assisted suicide within the broader context of end-of-life practices. In the Netherlands the euthanasia law resulted in a relatively transparent practice. Although translating these results to other countries is not straightforward, they can inform the debate on legalisation of assisted dying in other countries. FUNDING The Netherlands Organization for Research and Development (ZonMw).

The incidence and impact of implantable cardioverter defibrillator shocks in the last phase of life: An integrated review:

Background: Although the implantable cardioverter defibrillator is successful in terminating life threatening arrhythmias, it might give unwanted shocks in the last phase of life if not deactivated in a timely manner. Aims: This integrated review aimed to provide an overview of studies reporting on implantable cardioverter defibrillator shock incidence and impact in the last phase of life. Methods and results: We systematically searched five electronic databases. Studies reporting on the incidence and/or impact of implantable cardioverter defibrillator shocks in the last month of life were included. Fifteen studies were included. Two American studies published in 1996 and 1998 reported on the incidence of shocks in patients who died non-suddenly: incidences were 24% and 33%, respectively, in the last 24 hours, and 7% and 14%, respectively, in the last hour of life. Six American studies and one Danish study published between 1991–1999 reported on patients dying suddenly: incidences were 41% and 68% in the last 24 hours and 22–66% in the last hour. Four American studies and two Swedish studies published between 2004–2015 did not distinguish the cause of death: incidences were 17–32% in the last month, 3–32% in the last 24 hours, and 8% and 31% in the last hour of life. Three American studies published between 2004–2011 reported that shocks in dying patients are painful and distressing for patients, and distressing for relatives and professional caregivers. Conclusion: If the implantable cardioverter defibrillator is not deactivated in a timely manner, a potentially significant proportion of implantable cardioverter defibrillator patients experience painful and distressing shocks in their last phase of life.

SCEN-artsen en de zorgvuldigheidseisen

SamenvattingBrinkman-Stoppelenburg A, Vergouwe Y, Van der Heide A, Onwuteaka- Philipsen BD. SCEN-artsen en de zorgvuldigheidseisen. Huisarts Wet 2015;58(6):290-3.AchtergrondConsultatie door een onafhankelijk arts is een van de zorgvuldigheidseisen waaraan artsen moeten voldoen bij het uitvoeren van euthanasie. SCEN-artsen zijn opgeleid om deze consultatie te verlenen. Met dit onderzoek wilden wij nagaan waarom SCEN-artsen soms vinden dat er niet aan de zorgvuldigheidseisen is voldaan. Verder wilden we achterhalen welke factoren samenhangen met een negatief oordeel van SCEN-artsen.MethodeGedurende vijf jaar (2006, 2008-2011) hebben we gestandaardiseerde vragenlijsten afgenomen bij alle SCEN-artsen in Nederland. Door middel van een multilevel logistische regressie hebben we gekeken welke factoren samenhingen met het oordeel van de SCEN-artsen over het al dan niet voldoen aan de zorgvuldigheidseisen.ResultatenWe hebben 1631 euthanasieverzoeken geanalyseerd, waarbij 415 SCEN-artsen betrokken waren. De kans dat aan de zorgvuldigheidseisen was voldaan nam af bij bepaalde patiëntkenmerken: ‘levensmoeheid’, ‘depressie’ en ‘niet tot last van familie/ omgeving willen zijn’. Fysiek lijden en een hogere leeftijd van de patiënt hingen samen met een grotere kans dat aan alle zorgvuldigheidseisen was voldaan. We hebben ook gekeken naar kenmerken van de SCEN-artsen zelf. Alleen hogere leeftijd lijkt enigszins samen te hangen met een wat grotere kans dat aan de zorgvuldigheidseisen is voldaan. We vonden geen samenhang tussen andere kenmerken van de SCEN-artsen en hun oordeel.ConclusieAls er sprake is van psychisch lijden is er een grotere kans dat SCEN-artsen vinden dat niet aan de zorgvuldigheidseisen is voldaan. Het oordeel van SCEN-artsen hangt niet samen met persoonskenmerken als geslacht, achtergrond, ervaring als SCEN-arts, gevolgde scholing en of ze al dan niet consulent palliatieve zorg zijn.

There is more to end-of-life practices than euthanasia – Authors' reply

202 www.thelancet.com Vol 381 January 19, 2013 prevalence in northwest London might have allowed identifi cation of a rare association. These two cases of unrelated strains of tuberculosis raised concerns clinically in our centre, where treated patients come from more than 37 primary-care trusts (44% of whom live within northwest London) yet we have not seen tuberculosis in the more than 1500 people with multiple sclerosis seen yearly over the past 3 years nor in more than 150 people with multiple sclerosis treated with cytotoxic immunotherapies including mitoxantrone and cyclophosphamide. Given the low frequency of events, we agree with Charlotte Anderson and colleagues’ comments that a high level of awareness should guide highly targeted prevention activities.