S. Verhagen

Changed patterns in Dutch palliative sedation practices after the introduction of a national guideline.

BACKGROUND Continuous sedation, contrary to euthanasia, has been increasingly accepted among medical professionals worldwide. In the Netherlands, a national guideline for continuous palliative sedation has been developed to contribute to the quality of palliative sedation practice. The present follow-up study investigated whether the practice of continuous sedation has changed after the introduction of this guideline. METHODS This study compared the practice of continuous sedation before and after the introduction of the guideline on December 7, 2005. A baseline measurement was performed between February 1, 2003, and May 1, 2005, with an enrollment of 492 physicians (medical specialists, general practitioners, and nursing home physicians). From January 1 to June 30, 2007, after the introduction of a national guideline for palliative sedation, a follow-up study was performed with the respondents of the baseline study. Physicians were asked to report on their last case of deep and continuous sedation in the past 12 months. RESULTS This study reports the results of the follow-up study and compares them to the results of the baseline study. The response rate was 69.3% (n = 341). Of these physicians, 160 reported a last case of continuous sedation in both the baseline and the follow-up studies. Physicians reported a significant increase in patient involvement in decision making, from 72.3% to 82.2%. Pain remained the most often reported reason to start sedation, whereas exhaustion as a reason for sedation increased. The use of benzodiazepines increased from 69.9% to 90.4%. In the first and second measurements, symptom-directed treatment during sedation was applied in 56% to 58% of the cases. In the second period, there was more often an explicit decision to not give artificial hydration during sedation (78.8% vs 56.3%). Of the physicians, 34.2% were convinced that sedation shortened the life of the patient because of dehydration. CONCLUSIONS After the introduction of the guideline, physicians reported that changes in palliative sedation practice conform to the recommendations of this guideline. For example, benzodiazepines were used for sedation more frequently than before and patient involvement in the decision-making process improved. Possible effects of dehydration and the large variation in symptom-directed treatment during sedation deserve careful attention.

Sedation in palliative care.

Purpose of review Palliative sedation, the conscious induction of sleep in patients with a very short life expectancy who suffer intractable physical and existential distress, may offer the patient and his or her relatives a more peaceful dying. This technique is still subject to several ethical and medical controversies justifying a review of the recent literature on this subject. Recent findings The available evidence consists of few prospective trials and mainly retrospectively collected case reports. Two guidelines are published in the period under review. The most important points stressed in these reviews are the careful information exchange with the patient, if possible, and his or her proxies, a gradually increased sedation allowing respite if possible to evaluate the effect of the sedation and the need for consultation with colleagues, preferentially physicians experienced in palliative care. Stopping artificial nutrition and hydration is a medical decision that should be taken after evaluation of the potential side effects and consultation with the patient and relatives. Summary Palliative sedation may be considered for terminally ill patients who suffer intractable symptoms. Ideally it should be included in the patients trajectory that has been described and discussed earlier when the disease was judged to be incurable. The main goal is to offer comfort.

Exploring the contribution of psychosocial factors to fatigue in patients with advanced incurable cancer

Fatigue is the most frequently occurring and distressing symptom in patients with advanced cancer, caused by multiple factors. Neither a specific histological diagnosis of malignancy nor the type of anticancer treatment seem to be strongly related to fatigue, which support the idea that other factors may play a role. This study investigated to what extent the model of fatigue‐perpetuating factors that is known for cancer survivors was applicable for patients with advanced cancer.

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.

A prospective analysis on fatigue and experienced burden in informal caregivers of cancer patients during cancer treatment in the palliative phase

Abstract Background. Although fatigue is the most frequently occurring symptom in patients with cancer, hardly anything is known about fatigue of their informal caregivers and the impact fatigue might have on perceived burden with providing care. We investigated the presence of fatigue in caregivers, its course and the relation of fatigue severity between caregivers and patients. Furthermore, we explored in caregivers whether fatigue severity was correlated to experienced burden. Material and methods. Informal caregivers and patients on cancer treatment in the palliative phase completed questionnaires at baseline and follow-up (6 months later). To measure fatigue severity, both groups completed the Checklist Individual Strength. Additionally, caregivers completed the Caregivers Strain Index to assess experienced burden with providing care. Descriptive analyses, paired t-tests, χ2-tests, Pearsons correlations and regression analysis were performed. Results. At baseline 111 couples (patients and caregivers) participated, at follow-up 75 couples. At both time points 23% of caregivers were severely fatigued. There was no significant correlation between patients and caregivers on fatigue. Higher fatigue in both patients and caregivers was correlated with higher burden in caregivers and over 30% of burden could be explained by fatigue. Conclusion. Almost a quarter of caregivers of patients on active palliative treatment were severely fatigued, which figure remained stable over time. Fatigue in both patients and caregivers was related to caregivers’ burden. This observation should be taken into account with the growing demand on caregivers and the increase in cancer treatment options in the palliative setting.

Palliatieve sedatie bij kinderen

SamenvattingKoene S, Verhagen AAE, Veldhoven C, De Wildt SN, Verhagen SC. Palliatieve sedatie bij kinderen. Huisarts Wet 2017;60(7):324-7. Over palliatieve sedatie bij kinderen is weinig bekend. De incidentie thuis is laag, waardoor huisartsen niet in staat zijn hiermee ervaring op te bouwen. Dit artikel exploreert de valkuilen van palliatieve sedatie bij kinderen vanuit ethisch en klinisch-farmacologisch perspectief. Het is moeilijk om bij kinderen vast te stellen wanneer refractaire symptomen zo ernstig zijn dat het verlichten van lijden te verkiezen is boven het verlengen van het leven. Een tweede ethisch dilemma ontstaat als palliatieve sedatie verward wordt met opzettelijke levensbeëindiging. Midazolam is ook bij kinderen het middel van eerste keus. Leeftijd en ziekzijn leiden tot een grote variatie in klaring, zodat titratie altijd op individuele basis moet gebeuren. We geven praktische aanbevelingen over de farmacologische uitvoering van palliatieve sedatie bij kinderen. We adviseren laagdrempelig intercollegiaal te overleggen met artsen, zoals een kinderoncoloog, kinderintensivist of een palliatief team dat ervaring heeft met palliatieve sedatie bij kinderen.