Advance care planning for patients with end-stage kidney disease on dialysis: narrative review of the current evidence, and future considerations.

Patients with end-stage kidney disease (ESKD) have a high symptom-burden and high rates of morbidity and mortality. Despite this, evidence has shown that this patient group does not have timely discussions to plan for deterioration and death, and at the end of life there are unmet palliative care needs. Advance care planning is a process that can help patients share their personal values and preferences for their future care and prepare for declining health. Earlier, more integrated and holistic advance care planning has the potential to improve access to care services, communication, and preparedness for future decision-making and changing circumstances. However, there are many barriers to successful implementation of advance care planning in this population. In this narrative review we discuss the current evidence for advance care planning in patients on dialysis, the data around the barriers to advance care planning implementation, and interventions that have been trialled. The review explores whether the concepts and approaches to advance care planning in this population need to be updated to encompass current and future care. It suggests that a shift from a problem-orientated approach to a goal-orientated approach may lead to better engagement, with more patient-centred and satisfying outcomes.

Prevalence of depression in amyotrophic lateral sclerosis/motor neuron disease: multi-attribute ascertainment and trajectories over 30 months.

Objective: Evidence is equivocal about the prevalence of depression in amyotrophic lateral sclerosis (ALS). This study uses a multi-attribute ascertainment of the prevalence of depression and examines this prevalence over time. Methods: Patients with ALS were recruited into the Trajectories of Outcome in Neurological Conditions (TONiC-ALS) study. Caseness was identified by the Modified-Hospital Anxiety and Depression Scale (M-HADS). In addition, participants provided data on co-morbidities and medication use. A combination of the three was used to derive the estimate for the prevalence of depression, treated or untreated. Longitudinal data were analyzed by trajectory analysis of interval level M-HADS-Depression data. Results: Among 1120 participants, the mean age was 65.0 years (SD 10.7), 60.4% male, and the median duration since diagnosis was 9 months (IQR 4-24). Caseness of probable depression at baseline, defined by M-HADS-Depression, was 6.45% (95%CI: 5.1-8.0). Taken together with antidepressant medication and co-morbidity data, the prevalence of depression was 23.1% (95%CI: 20.7-25.6). Of those with depression, 17.8% were untreated. Trajectory analysis identified three groups, one of which contained the most cases; the level of depression for each group remained almost constant over time. Conclusion: Depression affects almost a quarter of those with ALS, largely confined to a single trajectory group. Prevalence estimates based on screening for current depressive symptoms substantially under-estimate the population experiencing depression. Future prevalence studies should differentiate data based on current symptoms from those including treated patients. Both have their place in assessing depression and the response by the health care system, including medication, depending upon the hypothesis under test.

Challenges of mediated communication, disclosure and patient autonomy in cross-cultural cancer care.

BACKGROUND: Evidence concerning the influence of ethnic diversity on clinical encounters in cancer care is sparse. We explored health providers' experiences in this context. METHODS: Focus groups were conducted with a purposeful sample of 106 health professionals of differing disciplines, in 18 UK primary and secondary care settings. Qualitative data were analysed using constant comparison and processes for validation. RESULTS: Communication and the quality of information exchanged with patients about cancer and their treatment was commonly frustrated within interpreter-mediated consultations, particularly those involving a family member. Relatives' approach to ownership of information and decision making could hinder assessment, informed consent and discussion of care with patients. This magnified the complexity of disclosing information sensitively and appropriately at the end of life. Professionals' concern to be patient-centred, and regard for patient choice and autonomy, were tested in these circumstances. CONCLUSION: Health professionals require better preparation to work effectively not only with trained interpreters, but also with the common reality of patients' families interpreting for patients, to improve quality of cancer care. Greater understanding of cultural and individual variations in concepts of disclosure, patient autonomy and patient-centredness is needed. The extent to which these concepts may be ethnocentric and lack universality deserves wider consideration.

Factors that influence decisions about cardiopulmonary resuscitation: the views of doctors and medical students.

BACKGROUND: A number of studies have explored doctors' views and experiences of cardiopulmonary resuscitation (CPR), but to our knowledge there has been no research to identify the information that doctors take into account when they make decisions about CPR. PURPOSE OF STUDY: To investigate factors that influence decisions about CPR. STUDY DESIGN: Qualitative study involving six focus groups with 17 doctors and four medical students in Leicester, UK. RESULTS: Doctors and medical students considered a number of factors important when making decisions about CPR-namely, the patient's diagnosis, prognosis, age, quality of life, the opinions of doctors and other medical staff, and the wishes of patients and relevant others. The relative importance of each of these factors varied significantly and was influenced by the doctors' own beliefs and values. CONCLUSIONS: Doctors would benefit from greater support for their decision making in relation to resuscitation to reduce variability in clinical practice and to promote appropriate patient care. Identification of factors that influence doctors' individual beliefs, attitudes and values towards resuscitation and improvement in the quality of patient communication may help to guide policy in this area.

Development, validity and reliability testing of the East Midlands Evaluation Tool (EMET) for measuring impacts on trainees' confidence and competence following end of life care training.

OBJECTIVES: To develop, test and validate a versatile questionnaire, the East Midlands Evaluation Tool (EMET), for measuring effects of end of life care training events on trainees' self-reported confidence and competence. METHODS: A paper-based questionnaire was designed on the basis of the English Department of Health's core competences for end of life care, with sections for completion pretraining, immediately post-training and also for longer term follow-up. Preliminary versions were field tested at 55 training events delivered by 13 organisations to 1793 trainees working in diverse health and social care backgrounds. Iterative rounds of development aimed to maximise relevance to events and trainees. Internal consistency was assessed by calculating interitem correlations on questionnaire responses during field testing. Content validity was assessed via qualitative content analysis of (1) responses to questionnaires completed by field tester trainers and (2) field notes from a workshop with a separate cohort of experienced trainers. Test-retest reliability was assessed via repeat administration to a cohort of student nurses. RESULTS: The EMET comprises 27 items with Likert-scaled responses supplemented with questions seeking free-text responses. It measures changes in self-assessed confidence and competence on 5 subscales: communication skills; assessment and care planning; symptom management; advance care planning; overarching values and knowledge. Test-retest reliability was found to be good, as was internal consistency: the questions successfully assess different aspects of the same underlying concept. CONCLUSIONS: The EMET provides a time-efficient, reliable and flexible means of evaluating effects of training on self-reported confidence and competence in the key elements of end of life care.

The effect of acute pharmacological manipulation of central serotonin neurotransmission on osmoregulated secretion of arginine vasopressin in the rat.

To explore the hypothesis that serotonin (5-HT) is important in osmoregulated arginine vasopressin (AVP) secretion, we administered (i.p.) fluoxetine (FL) a 5-HT reuptake inhibitor (10 mg/kg body weight), ritanserin (RIT), an antagonist at the 5-HT2 and 5-HT1c receptor subtypes (1 mg/kg body weight), 1-(4-iodo-2,5-dimethoxyphenyl)-2-aminopropane hydrochloride (DOI), a 5-HT2 receptor agonist (1 mg/kg body weight) or vehicle to rats 30 min before they were given an osmotic challenge. Rats received distilled water, normotonic saline (150 mmol NaCl/l) or hypertonic saline (500 mmol NaCl/l) (20 mg/kg i.p.) and were killed 30 min later. The osmotic stimulus alone produced significant (P < 0.001) effects on plasma osmolality and plasma sodium but FL, RIT and DOI did not have any significant effect on this stimulus. FL had no significant effect on the osmotic threshold of AVP release but significantly (P < 0.001) increased basal AVP secretion from 1.6 +/- 1.0 to 3.1 +/- 1.3 (S.E.M.) pmol AVP/l and significantly (P < 0.001) increased the AVP response to changes in plasma osmolality: vehicle-treated, 0.7 +/- 0.4; FL-treated, 1.7 +/- 0.2 pmol AVP/l per mOsm per kg. Neither RIT nor DOI had any significant effect on basal or stimulated AVP secretion. In a second study, RIT was administered 60 min i.p. prior to FL i.p. (doses as above), which was followed 30 min later by a hypertonic stimulus i.p. and rats were killed 30 min after hypertonic saline treatment. RIT had no significant effect on the AVP response to plasma osmolality and did not significantly alter the FL-augmented AVP response, suggesting that neither the 5-HT2 nor the 5-HT1c receptors are involved in the response of AVP to FL. We conclude that FL modulates osmoregulated AVP secretion but that the mechanism of this is unknown and is apparently not through the 5-HT2 or 5-HT1c receptor subtypes.

Symptom management in palliative care.

Controlling patients' symptoms in palliative care requires good communication skills. Pain, vomiting and nausea are common symptoms, but anorexia and sleep disturbance are also frequently reported. Thorough evaluation and treatment of the underlying cause is imperative. Pain is different for each patient. Pain control therefore may not be achieved with analgesics alone.

An analysis of knowledge and attitudes of hospice staff towards organ and tissue donation.

BACKGROUND: Only a minority of hospice patients eligible to donate tissue and organs choose to do so. Hospice care staff play a key role in discussions about donation, but their willingness to engage in these discussions and their understanding of issues around tissue and organ donation is poorly understood. AIMS: To (i) identify factors associated with the wish of hospice doctors, nurses and healthcare assistants to donate their own organs after death; (ii) survey the experience of discussing the subject with patients; (iii) determine staff members' knowledge of organ and tissue donation and (iv) identify factors associated with knowledge of organ and tissue donation. DESIGN: Cross-sectional questionnaire survey of hospice care staff. SETTING/PARTICIPANTS: 76 of the 94 care staff of one large UK hospice completed and returned the questionnaire. RESULTS: Staff wishing to donate their organs after death (43/76 56.6%) were more likely to be doctors or nurses than healthcare assistants (p=0.011) and more likely to have discussed organ or tissue donation with their family (p<0.001). Staff reporting ever having discussed donation with patients had more years' experience (p=0.045) and had similarly discussed donation with their own family (p=0.039). Those with greater knowledge were more likely to have discussed organ or tissue donation with a patient (p=0.042). CONCLUSIONS: A reluctance to instigate discussions about organ and tissue donation may prevent palliative patients and their families being allowed the opportunity to donate. Suboptimal knowledge among hospice staff suggests the need for greater liaison between hospice staff, and the organ and tissue donation teams.

Abdominal pain in six-year-olds: an epidemiological study in a new town.

This study investigated recurrent abdominal pain in all 494 second-year infant children in a new town using a postal questionnaire followed by sampling and detailed interview. A prevalence of between 24.5 and 26.9% was found and there were associations with psychiatric deviance both at home and at school. There were also associations with social support of the mother, difficulties in settling into school and status of house ownership. Details of parental management of their children's symptoms are described.

Experience with dipipanone elixir in the management of cancer related pain--case study.

The synthetic opioid dipipanone is infrequently used in the UK in the management of malignant pain, principally because of the inflexibility of the Diconal combination preparation (dipipanone 10 mg with cyclizine 30 mg). We present three patients in which dipipanone elixir proved to be their own drug of choice in the management of opioid responsive cancer pain, and our experience with 15 other patients. Dipipanone elixir was formulated 10 mg/5 ml, in single strength chloroform water.

Treatment of resistant pain in hypertrophic pulmonary osteoarthropathy with subcutaneous octreotide.

Pain in hypertrophic pulmonary osteoarthropathy (HPOA) due to periostitis and arthropathy can be a particularly disabling symptom, and resistant to a wide variety of treatments. The effectiveness of subcutaneous octreotide in relieving this pain in a patient with HPOA is reported.

Water balance in elderly people: is there a deficiency of vasopressin?

Since elderly people are prone to develop both hypo- and hyper-natraemia, we have investigated the biochemical and hormonal responses to overnight (9 h) abstinence from fluids and subsequent oral water load (20 ml/kg) in a group of healthy elderly (E) (mean age 68 years) and young (Y) (mean age 28 years) volunteers. The elderly subjects had significantly higher baseline plasma osmolality (E 293.5 +/- 0.5, Y 290.5 +/- 0.8 mOsm/kg, p < 0.05) but lower urinary osmolality (E 508 +/- 47, Y 842 +/- 52 mOsm/kg, p < 0.001) and lower plasma vasopressin (E 0.5 +/- 0.1, Y 2.3 +/- 0.6 pmol/l, p < 0.001) than the young. There was a significant difference in the mode of excretion, particularly maximum free water clearance (E 6.0 +/- 0.6, Y 10.1 +/- 0.8 ml/min) but no difference in the overall ability to excrete the water load (at 4 h E 93 +/- 8%, Y 92 +/- 5%, p > 0.05). The biochemical and hormonal results suggest that the elderly subjects were in a state similar to partial cranial diabetes insipidus which may predispose them to dehydration and hypernatraemia. The reduction in maximum free water clearance may predispose them to hyponatraemia if excess fluid is administered.

The effect of a highly specific serotonin agonist on osmoregulated vasopressin secretion in healthy man.

OBJECTIVE: To explore a possible interaction of the serotonin neurotransmitter system and posterior pituitary function, we have looked at the effect of fluoxetine treatment on osmoregulated vasopressin secretion in normal men in two placebo controlled studies. DESIGN: In each study subjects took in random order for 7 days one capsule daily of placebo or 40 mg fluoxetine. On the 8th day subjects underwent assessment. Study 1 A hypo-osmotic stimulus of an oral water load of 20 ml/kg. Study 2 A hyperosmotic stimulus of intravenous infusion of 5% (855 mmol/l) saline at 0.06 ml/kg/min for 120 minutes. PATIENTS: Normal, healthy male volunteers. Study 1, 9; Study 2, 10. MEASUREMENTS: In both studies regular measures of plasma osmolality, sodium and vasopressin were made. In Study 1 urine osmolality was measured together with urine volume at set time points and an accumulative measure of percentage of water load excreted. Free water clearance was calculated. In Study 2 the relationship of plasma vasopressin to change in plasma osmolality was calculated for each subject by linear regression analysis. RESULTS: Serotonin agonism had no effect on baseline measurements in either study. Study 1 After 4 hours subjects excreted 95 and 99% of the water load after placebo and fluoxetine respectively (P = 0.407). There was no effect of fluoxetine compared to placebo on the pattern or extent of change of plasma osmolality (nadir 285.9 +/- 1.4 mosm/kg placebo, 283.1 +/- 1.1 mosm/kg fluoxetine, P = 0.145) or free water clearance or maximum urine dilution after oral water loading. Plasma vasopressin suppressed to a minimum concentration after both treatments in response to hypo-osmolality 0.5 +/- 0.1 pmol/l (placebo), 0.3 +/- 0.01 pmol/l (fluoxetine), P = 0.195. Study 2 Fluoxetine had no significant effect on the sensitivity of vasopressin release to change in plasma osmolality (0.33 +/- 0.06 pmol/l per mosm/kg placebo, 0.36 +/- 0.06 pmol/l per mosm/kg fluoxetine, P = 0.347). Nor was there a significant effect on the theoretical osmotic threshold for release of vasopressin (287.0 +/- 1.21 mosm/kg placebo, 286.9 +/- 1.09 mosm/kg fluoxetine, P = 0.700). CONCLUSION: We have found no evidence of a physiologically relevant effect of serotonin agonism on osmoregulated vasopressin release, or on the ability of normal man to excrete a water load. The possible reasons for this contrast to animal work are discussed.

Research note: temperament and behaviour in six-year-olds with recurrent abdominal pain: a follow up.

Dimensions of temperament and behaviour were measured in a group of infant school children with recurrent abdominal pain and in a control group. Children with recurrent abdominal pain were temperamentally more difficult than those without, and in particular, girls were found to have a more irregular temperamental style and boys to be more likely to withdraw in new situations. Temperamental differences were more persistent than the abdominal pain itself. There was little difference behaviourally between the groups. It is hypothesized that abdominal pain represents an interaction between a vulnerable temperamental style and environmental stresses.

Pseudohypoparathyroidism: its phenotypic variability and associated disorders in a large family.

Pseudohypoparathyroidism is a complex disorder of renal resistance to parathyroid hormone the mechanism of which is unclear. It is often associated with skeletal abnormalities and there may also be other hormonal defects. This is an extensive endocrinological investigation of five of six affected members in two generations of one family. The phenotypic variability of the syndrome is explored: four members had hypothyroidism; two had abnormal gonadal function; all five had abnormal prolactin response to TRH; one had abnormal hepatic response to glucagon infusion. All had normal hypothalamic-pituitary-adrenal axes, renal responsiveness to vasopressin and growth hormone responses to a variety of stimuli. Special note is made of oral pathology, and evidence of platelet aggregation abnormalities is presented which has not previously been described in the syndrome.

The effect of the general practice registrar year on perceived skills in palliative care in the West Midlands.

OBJECTIVES: To ascertain the effect of 12 months spent as a GP registrar on perceived skills in palliative care. DESIGN: A previously validated questionnaire for use with medical undergraduates is modified and used to survey perceived skills in five aspects of providing palliative care in five different scenarios at two points during the 12-month period of general practice vocational training where no specific teaching intervention is conducted. SETTING: The West Midlands. PARTICIPANTS: 210 GP registrars. RESULTS: Perceived skill ratings were seen to significantly increase during the 12-month period, but anxiety in caring for the dying did not significantly decrease. Ratings of skills were lowest when caring for a child dying with leukaemia or a young adult dying with AIDS. In addition, other important variables which had a statistically significant influence were gender and age, but interestingly not the number of previous senior house officer (SHO) posts undertaken or whether the respondent had had formal teaching on the subject in the past. CONCLUSION: It might therefore be postulated that training as a GP registrar has an important impact on the development of perceived skills in palliative care.