Research focusing on quality of life (QoL) in children and adolescents with high-risk malignancy (HRM) is of primary importance. As most of these patients are treated in low and middle income countries1, publications from Central America are of great value. We are thankful to Salaverria et al. for their work addressing this complex and key subject2.
Patients with HRM were defined by Mahmood et al. as having more than 50% risk of death due to their disease. These patients should receive optimal symptoms management and optimal disease directed therapies to increase both their survival and QoL. To achieve this, the intervention of a specialized pediatric palliative care (PPC) team was proven feasible and effective3, 4. PPC is as a holistic approach that does not exclude cancer directed care and should include the best chemotherapy regimen aiming at optimal QoL and life expectancy.
Salaverria et al. described a prospective cohort of 60 patients suffering from relapsed or refractory leukemia. 44 patients of them died, 39 of whom due to leukemia progression. All Enrolled patients were prospectively followed and assessed for self or proxy-reported QoL with a nearly exhaustive data collection. These results give us a very precise and unprecedented insight into HRM patients’ QoL.
In this sample, all patients received chemotherapy, 65% of patients received specialized PPC at inclusion and 79.5% received specialized PPC in the last month of life. Initial curative in...
Research focusing on quality of life (QoL) in children and adolescents with high-risk malignancy (HRM) is of primary importance. As most of these patients are treated in low and middle income countries1, publications from Central America are of great value. We are thankful to Salaverria et al. for their work addressing this complex and key subject2.
Patients with HRM were defined by Mahmood et al. as having more than 50% risk of death due to their disease. These patients should receive optimal symptoms management and optimal disease directed therapies to increase both their survival and QoL. To achieve this, the intervention of a specialized pediatric palliative care (PPC) team was proven feasible and effective3, 4. PPC is as a holistic approach that does not exclude cancer directed care and should include the best chemotherapy regimen aiming at optimal QoL and life expectancy.
Salaverria et al. described a prospective cohort of 60 patients suffering from relapsed or refractory leukemia. 44 patients of them died, 39 of whom due to leukemia progression. All Enrolled patients were prospectively followed and assessed for self or proxy-reported QoL with a nearly exhaustive data collection. These results give us a very precise and unprecedented insight into HRM patients’ QoL.
In this sample, all patients received chemotherapy, 65% of patients received specialized PPC at inclusion and 79.5% received specialized PPC in the last month of life. Initial curative intent was associated with improved physical health, pain and fatigue. Given these results, it appears that curative regimen also represented the optimal palliative chemotherapy!
The authors state that favorable outcomes of patients treated with curative intent could be explained by a selection bias leading to enroll more vulnerable patients in the palliative intent treatment. This is indeed supported by the results showing more acute myeloid leukemia, refractory diseases and earlier relapses in the palliative intent arm. Characteristics of acute lymphoblastic leukemia relapses (i.e. bone marrow or central nervous system involvement), first line treatment or performance status at enrollment were not described although these could represent confounding factors.
This work represents a unique contribution to our knowledge about PPC recipients for leukemia. However, we would like to discuss the author’s conclusion that “curative approach may be a reasonable option for patients with acute leukemia even when prognosis is poor”. Disease burden and treatment toxicity may represent more important determinants of QoL than the physician intent.
We would rather advocate that there should be no situation in which physicians should choose between palliative care and effective chemotherapy. Further research is needed to optimize and personalize the treatment plan for patients with advanced hematological malignancies.
1 - Atun R, Bhakta N, Denburg A, et al. Sustainable care for children with cancer: a Lancet Oncology Commission. Lancet Oncol. 2020;21(4):e185-e224. doi:10.1016/S1470-2045(20)30022-X
2 - Salaverria C, Plenert E, Vasquez R, Fuentes-Alabi S, Tomlinson GA, Sung L. Paediatric relapsed acute leukaemia: curative intent chemotherapy improves quality of life [published online ahead of print, 2021 Jan 17]. BMJ Support Palliat Care. 2021;bmjspcare-2020-002722. doi:10.1136/bmjspcare-2020-002722
3 - Mahmood LA, Casey D, Dolan JG, Dozier AM, Korones DN. Feasibility of Early Palliative Care Consultation for Children With High-Risk Malignancies. Pediatr Blood Cancer. 2016;63(8):1419-1422. doi:10.1002/pbc.26024
4 - Kaye EC, Friebert S, Baker JN. Early Integration of Palliative Care for Children with High-Risk Cancer and Their Families. Pediatr Blood Cancer. 2016;63(4):593-597. doi:10.1002/pbc.25848
Dear Editor,
We read with great interest the article by Curry et al. on the outcomes after venting gastro-/jejunostomy from our own institution.
While venting gastrostomy has a potentially important role to play in cancer palliation, it is offered in only approximately 60% of UK centres. The outcome and patient experience is highly dependent on good tube function. Continuous decompression of the stomach and upper small bowel is essential to alleviate symptoms and stop the development of complications.
Little is published on the technical aspects of the procedure, how to undertake this safely and what the requirements for patient selection and aftercare are. Would the authors please be so kind, as to provide some technical detail to guide the readership?
To our knowledge there are no licensed devices for this purpose. What type of tubes did the authors review (push-PEGs +/- jejunal extension, G-tubes with gastropexy, gastrojejunostomy or transgastric jejunostomy tubes), what was the experience of 4-point gastropexy for GJ-tubes and what size was do they recommend to achieve adequate drainage, bearing in mind that balloon-retained silicone tubes have a much smaller inner lumen than polyurethane PEG tubes?
Our attempts using 20Fr push-PEG tubes led to very poor patient experience, which has been improved by switching to gastro-jejunostomy tubes, as they achieve better drainage due accessing the fluid in the duodenum rather than in the stomach, we...
Dear Editor,
We read with great interest the article by Curry et al. on the outcomes after venting gastro-/jejunostomy from our own institution.
While venting gastrostomy has a potentially important role to play in cancer palliation, it is offered in only approximately 60% of UK centres. The outcome and patient experience is highly dependent on good tube function. Continuous decompression of the stomach and upper small bowel is essential to alleviate symptoms and stop the development of complications.
Little is published on the technical aspects of the procedure, how to undertake this safely and what the requirements for patient selection and aftercare are. Would the authors please be so kind, as to provide some technical detail to guide the readership?
To our knowledge there are no licensed devices for this purpose. What type of tubes did the authors review (push-PEGs +/- jejunal extension, G-tubes with gastropexy, gastrojejunostomy or transgastric jejunostomy tubes), what was the experience of 4-point gastropexy for GJ-tubes and what size was do they recommend to achieve adequate drainage, bearing in mind that balloon-retained silicone tubes have a much smaller inner lumen than polyurethane PEG tubes?
Our attempts using 20Fr push-PEG tubes led to very poor patient experience, which has been improved by switching to gastro-jejunostomy tubes, as they achieve better drainage due accessing the fluid in the duodenum rather than in the stomach, were it can cause nausea, biliary gastritis, reflux and aspiration, notably in the supine position. However GJ-tubes are much more demanding in terms of tube maintenance. The title suggests that outcome of both types were assessed – could the authors’ please elaborate on the differences reported by patients and can one be recommended over the other?
The introduction of the Enfit standard has resulted in additional problems with the connectors reducing flow and causing obstruction, and patients having difficulties obtaining matching drainage bags. This is proving such a problem that we are considering suspending this procedure. What advice do the authors have?
Malignant bowel obstruction precludes the administration of oral contrast and it is frequently associated with large-volume ascites, which can result in debilitating leakage. What method was used to identify the colon during the procedure and how is co-existing ascites managed?
In our experience patient selection and counselling is crucial. Patients – and indeed the referring team – rarely fully understand that the patient is limited to a comfort-based intake of fluids and requires additional parenteral nutrition. Leakage of gastric content is a frequent problem, leading to skin excoriation and break down of the peri-stomal tissues, which blights patients’ lives if not checked rapidly. “Infection” should be treated in the first instance with topical creams combining an appropriate antibiotic / antifungal and a steroid after a wound swab and culture, not with systemic antibiotics. We routinely apply an alginate (Flaminal Hydro, Flen Health, London, UK) for two weeks after the procedure to promote healing and reduce the risk of infection, and offer an open-accesss drop-in clinic for all gastrostomy patients. Do the authors’ have any advice for post-procedural wound care, which is crucial in reducing complications?
What were the lessons learned from tubes “falling out” and how were these managed? In contrast to gastrostomy, gastro-jejunostomy catheters require image-guidance to be reintroduced into the duodenum.
Hoping to be referenced in future projects that were designed collaboratively,
Sincerely,
The Christie Interventional Radiology Team
Title: Cannabinoids impact on insomniacs with chronic pain: how cautious we should be?
This correspondence provides a comment on the recent review article by Humer et al. (Int. J. Mol. Sci. 2020, 21(19), 7244; https://doi.org/10.3390/ijms21197244)
Dear Editor,
From the results of a recent cross-sectional study on patients with insomnia and chronic pain, published in the BMJ Support Palliat Care, Sznitman and colleagues have suggested that Medicinal Cannabis (MC) could have positive effects in sleep maintenance of patients experiencing chronic pain. Since both conditions, insomnia and chronic pain play an important role in the clinical arena, either related to their impact on the quality of life and associated comorbidities, but also because both have high rates of prevalence among the world population. This is a highly relevant finding, however, we believe that it deserves further consideration.
Although insomnia majorly affects patients seeking care in clinics managing patients complaining of persistent pain1, other sleep conditions as obstructive sleep apnea (OSA) could also prevail in similar circumstances2. In fact, comorbid insomnia with sleep apnea (COMISA) frequently occurs and may lead to a more cautious clinical approach since this comorbid condition might have different etiological, pathophysiological, diagnostic, and therapeutic implications. Either Insomnia1 or OSA increases with age, wi...
Title: Cannabinoids impact on insomniacs with chronic pain: how cautious we should be?
This correspondence provides a comment on the recent review article by Humer et al. (Int. J. Mol. Sci. 2020, 21(19), 7244; https://doi.org/10.3390/ijms21197244)
Dear Editor,
From the results of a recent cross-sectional study on patients with insomnia and chronic pain, published in the BMJ Support Palliat Care, Sznitman and colleagues have suggested that Medicinal Cannabis (MC) could have positive effects in sleep maintenance of patients experiencing chronic pain. Since both conditions, insomnia and chronic pain play an important role in the clinical arena, either related to their impact on the quality of life and associated comorbidities, but also because both have high rates of prevalence among the world population. This is a highly relevant finding, however, we believe that it deserves further consideration.
Although insomnia majorly affects patients seeking care in clinics managing patients complaining of persistent pain1, other sleep conditions as obstructive sleep apnea (OSA) could also prevail in similar circumstances2. In fact, comorbid insomnia with sleep apnea (COMISA) frequently occurs and may lead to a more cautious clinical approach since this comorbid condition might have different etiological, pathophysiological, diagnostic, and therapeutic implications. Either Insomnia1 or OSA increases with age, with a possible co-occurrence of up to 67%2 during the lifetime. In this context, given the probability of a misdiagnosis, both conditions should be carefully accessed whenever managing patients with pain-related complaints, mainly those in the middle-age group. Although, with some important constraints, cannabis-based medicines are being used for many years, showing benefits in different aspects of pain-related conditions. Interestingly, in a survey conducted by Nicholson et al. (2004), the authors found some evidence of increased sleepiness and changes in the mood of OSA patients using some forms of MC3. Also, when assessing international data basis, Mu-Chen et al. (2011), described an increased rate of motor vehicle accidents among marijuana users, especially chronic users4. On the other hand, long-term opioid therapy, a risky approach for OSA patients, has been commonly prescribed for chronic pain patients, including those within the higher age group5. Conversely, it is known that in OSA patients, the control of the sleep-related respiratory dysfunction positively impacts pain complaints and the need for opioids but a recent paradoxical finding with potential relevance for either those patients with chronic pain and insomnia, OSA or COMISA, showed that certain benzodiazepine sedatives induced a mild respiratory depression but paradoxically reduced sleep apnea risk and severity by increasing the respiratory arousal threshold5. So, we should be very cautious when assuming the benefits of MC in insomnia in such patient. Maybe we should be aware of the possible comorbid occurrence (COMISA), the complexity of insomnia phenotypic characterization, and its potentially major role in guiding clinical practice.
This survey is funded by CNPq, granting number: 126739/2020-0.
References:
1. Meira E Cruz M, Lukic N, Wojczynska A, Steiger B, Guimarães AS, Ettlin DA. Insomnia in Patients Seeking Care at an Orofacial Pain Unit. Front Neurol. 2019;10:542. Published 2019 May 28. doi:10.3389/fneur.2019.00542
2. Sweetman A, Lack L, Bastien C. Co-Morbid Insomnia and Sleep Apnea (COMISA): Prevalence, Consequences, Methodological Considerations, and Recent Randomized Controlled Trials. Brain Sci. 2019;9(12):371. Published 2019 Dec 12. doi:10.3390/brainsci9120371
3. Boyaji S, Merkow J, Elman RNM, Kaye AD, Yong RJ, Urman RD. The Role of Cannabidiol (CBD) in Chronic Pain Management: An Assessment of Current Evidence. Curr Pain Headache Rep. 2020 Jan 24;24(2):4. doi: 10.1007/s11916-020-0835-4. PMID: 31980957.
4. Nicholson AN, Turner C, Stone BM, Robson PJ. Effect of Δ-9-tetrahydrocannabinol and cannabidiol on nocturnal sleep and early-morning behavior in young adults. J Clin Psychopharmacol. 2004;24(3):305–13.
5. Mir S, Wong J, Ryan CM, et al. Concomitant benzodiazepine and opioids decrease sleep apnoea risk in chronic pain patients. ERJ Open Res. 2020;6(3):00093-2020. Published 2020 Aug 25. doi:10.1183/23120541.00093-2020
Interesting reading the article by Sutherland et al [1] on the use of video consultations in palliative care. As a clinician, as an user and advocate of video consultations I entirely agree that telehealth can and must be used as one of the tools of our disposal to be more efficient looking after our patients. There is no doubt workload is a trigger for new models of care.
Nevertheless, the pandemic has not only triggered an explosion in video consultations due to the need to minimise the risk of infection but a change in law in the United Kingdom that allows its full use, as in this country the death certificate includes the statement “Last seen alive by me …. ” and up to now there was a need to see the patient face to face within the last two weeks before death. Now, it is possible to have seen the patient within the last four weeks, and video consultations are considered as an option to face-to-face consultations.
It is argued there will be no return to the old norm, and that many changes brought by the pandemic will remain after it passes. It is hoped telemedicine expansion will remain, but in palliative medicine it will only do if the law changes remain in place.
References
1. Sutherland AE, Stickland J, Wee B. Can video consultations replace face-to-face interviews? Palliative medicine and the Covid-19 pandemic: rapid review. BMJ Supportive & Palliative Care 2020;10:271-275.
I read with interest the paper titled ‘The liminal space palliative care volunteers occupy and their roles within it: a qualitative study’ by Vanderstichelen et al (1) which reported on volunteers who care for terminally ill people. I consider that the authors’ conclusion that these volunteers occupy a liminal space ‘betwixt and between’ staff and family members may be drawn from an incomplete understanding of Turner’s (2) concept of liminality.
The term derives from limen meaning threshold and is used to denote moving across a boundary from one state to another. The model involves three stages: separation, transition (the liminal phase) and (re-) incorporation. Examples include changes in status, such as getting married or gaining majority, or in life-stage, such as birth and death.
I argue that Vanderstichelen et al’s consideration that these volunteers occupy a liminal space ‘betwixt and between’ staff and family members since they provide care which includes aspects of that given by both these ‘conceptually rigid and mutually exclusive domains’ (p. 9) shows that the volunteer role here is ambiguous rather than liminal. While ambiguity is a core feature of liminality as described by Turner and can be applied to the volunteer role – for example, when there are unclear boundaries between volunteer and paid staff roles (3) - the presence of this feature alone does not make the role liminal.
I acknowledge liminality has been used in some organisational li...
I read with interest the paper titled ‘The liminal space palliative care volunteers occupy and their roles within it: a qualitative study’ by Vanderstichelen et al (1) which reported on volunteers who care for terminally ill people. I consider that the authors’ conclusion that these volunteers occupy a liminal space ‘betwixt and between’ staff and family members may be drawn from an incomplete understanding of Turner’s (2) concept of liminality.
The term derives from limen meaning threshold and is used to denote moving across a boundary from one state to another. The model involves three stages: separation, transition (the liminal phase) and (re-) incorporation. Examples include changes in status, such as getting married or gaining majority, or in life-stage, such as birth and death.
I argue that Vanderstichelen et al’s consideration that these volunteers occupy a liminal space ‘betwixt and between’ staff and family members since they provide care which includes aspects of that given by both these ‘conceptually rigid and mutually exclusive domains’ (p. 9) shows that the volunteer role here is ambiguous rather than liminal. While ambiguity is a core feature of liminality as described by Turner and can be applied to the volunteer role – for example, when there are unclear boundaries between volunteer and paid staff roles (3) - the presence of this feature alone does not make the role liminal.
I acknowledge liminality has been used in some organisational literature as a way of conceptualising a state where liminars are not one thing or another - for example, management consultants and temporary workers. (4, 5) However, the difference between this use and Vanderstichelen et al’s application of the concept to palliative care volunteers is that management consultants and temporary workers are categories of personnel who usually come and go within organisations. Volunteers meanwhile are typically a permanent actor group in palliative care settings borne out by my own research (an as yet unpublished ethnography of patient- and family-facing volunteers in two UK hospices) which showed volunteer roles were a well-defined part of the hospice organisational structure, with ‘job’ descriptions and subjected to specific volunteer policies.
The focus on Turner’s model is on status change which I argue is lacking in the volunteer role: volunteers are not ‘betwixt and between’ two statuses. Perhaps within the frame of an individual’s life story can it be argued that being a volunteer represents a liminal phase. For example, if volunteering is undertaken with a view towards gaining a place at medical school then the volunteer could be said to be ‘betwixt and between’ school pupil and medical student. However, Vanderstichelen et al’s focus is not on the identity construction of individual volunteers.
Therefore, while the role may be enacted in spaces where dying - a liminal state between living and death - is taking place, it itself is not liminal despite incorporating some of the characteristics of liminality, namely ambiguity (and possibly marginality). It is this clarification which is lacking in the paper.
1. Vanderstichelen S, Cohen J, Van Wesemael Y, et al. The liminal space palliative care volunteers occupy and their roles within it: A qualitative study. BMJ Support Palliat Care 2018. Published Online First: 07 December 2018. doi: 10.1136/bmjspcare-2018-001632
2. Turner V.W. The ritual process. Harmondsworth: Penguin Books; 1974.
3. Hoad P. Volunteers in the independent hospice movement. Sociol Health Illn 1991;13;231-48.
4. Czarniawska B, Mazza C. Consulting as a liminal space. Hum Relat 2003;56:267-90.
5. Garsten C. Betwixt and between: Temporary employees as liminal subjects in flexible organizations. Organization Studies, 1999;20:601-17.
We read and agreed with several points in the editorial [1] that accompanied our main research paper about UK clinicians' views on blood transfusion practice [2]. We have additional responses to the editorial.
We recognise the lack of evidence about red cell transfusion within palliative care, which is why we undertook the largest audit of transfusion practice to date [3]. We analysed 465 transfusion episodes over 3 months from 121 UK hospices. Patients were not usually investigated for the anaemia. Of those that were, a significant proportion would have benefited from B12, folate or iron supplements, although rarely used. Despite being at higher risk of transfusion-associated circulatory overload (TACO), risk-mitigation practices like weighing patients or restricting transfusion to one unit (before review), were only undertaken in 15% of patients. In terms of patient benefit only 83 (18%) had improvement maintained at 30 days; 142 (31%) <14 days, and 50 (11%) had none. 150 patients (32%) were dead at 30 days, over double the predicted number.
While documented death rates and major morbidity from red cell transfusion are low in the general population, there is growing evidence of under recognition and under reporting. A study across 157 UK hospitals showed that 4.3% of inpatients >60 years had increasing respiratory distress post-transfusion, but only one-third diagnosed with TACO by the hospital were reported to the SHOT Haemovigilance Group [...
We read and agreed with several points in the editorial [1] that accompanied our main research paper about UK clinicians' views on blood transfusion practice [2]. We have additional responses to the editorial.
We recognise the lack of evidence about red cell transfusion within palliative care, which is why we undertook the largest audit of transfusion practice to date [3]. We analysed 465 transfusion episodes over 3 months from 121 UK hospices. Patients were not usually investigated for the anaemia. Of those that were, a significant proportion would have benefited from B12, folate or iron supplements, although rarely used. Despite being at higher risk of transfusion-associated circulatory overload (TACO), risk-mitigation practices like weighing patients or restricting transfusion to one unit (before review), were only undertaken in 15% of patients. In terms of patient benefit only 83 (18%) had improvement maintained at 30 days; 142 (31%) <14 days, and 50 (11%) had none. 150 patients (32%) were dead at 30 days, over double the predicted number.
While documented death rates and major morbidity from red cell transfusion are low in the general population, there is growing evidence of under recognition and under reporting. A study across 157 UK hospitals showed that 4.3% of inpatients >60 years had increasing respiratory distress post-transfusion, but only one-third diagnosed with TACO by the hospital were reported to the SHOT Haemovigilance Group [4]. People treated in hospices commonly have several TACO risk factors (as outlined in the editorial). TACO symptoms are non-specific and include cyanosis, dyspnoea and tachycardia which can be mistaken for deterioration of underlying advanced disease.
There is a misconception about how long it takes to correct abnormal haematinics; B12 and folate treatment can increase haemoglobin within 7–10 days and worth considering before transfusion if the cause of anaemia [5]. Intravenous iron to correct deficiency in palliative care is uncommon; however, it is offered by some services and increasingly seen as safer than red cell transfusion.
We believe that our paper [2] suggests UK clinicians might be out of step with the evolving evidence base and clinical guidelines about red cell transfusions. This particularly applies to more rigorous anaemia investigation, increased use of alternative therapies and a more restrictive approach to red cell transfusions. Clinicians should discuss the limited benefit versus potentially higher risks in hospice patients to inform treatment decisions.
References
1) Brown E. Blood transfusions: time for a change in practice. BMJ Support Palliat Care, 2019
2) Neoh K, Stanworth S, Bennett MI. How does blood transfusion practice by UK palliative medicine doctors compare with NICE guidance? BMJ Support Palliat Care 2019
3) Neoh K , Gray R, Grant-Casey J, Estcourt L, Malia C, Boland JW, Bennett MI. National Comparative Audit of Red Blood Cell Transfusion Practice in Hospices: Recommendations for Palliative Care Practice. Palliative Medicine 2019, Vol. 33(1) 102–108 2019
4) The TACO Audit Working Group, on behalf of the National Comparative Audit in Blood Transfusion (NCABT) Steering Group. The 2017 audit of Transfusion Associated Circulatory Overload (2018). NHSBT
Accessed online https://hospital.blood.co.uk/audits/national-comparative-audit/medical-a...
5) Devalia, V, Hamilton, MS, Molloy, AM. Guidelines for the diagnosis and treatment of cobalamin and folate disorders. Br J Haematol 2014; 166: 496–513.
We read with great interest the article by Centeno et al (2016) with regards to medical students’ experience of palliative care. [1] As medical students, who have recently experienced compulsory palliative care teaching during our 4th year, we wished to offer an insight into our experiences on its importance within the curriculum.
During pre-clinical years, there was a lack of emphasis on the holistic perspective of dying patients. The early attention on basic sciences can create the notion that medicine is oriented around ‘fixing people’, with little significance placed on the experience of dying. In the UK, the General Medical Council (GMC) provides guidelines for doctors on the ‘Treatment and care towards the end of life: good practice in decision making’. [2] Hence, a palliative care course is imperative, as it prepares medical students for one of the fundamental parts of medicine: respecting and nurturing the process of dying.
As part of our curriculum we have numerous palliative care days throughout the year. They involved visiting a hospice and speaking to patients, their families and staff, both individually, as well as in small groups. Throughout these days there are numerous activities that aid us to challenge and consider the process of dying. These involved reflective practices to allow students to consider their feelings if they were losing the most valued aspects of their life, as well as talks from family members about th...
We read with great interest the article by Centeno et al (2016) with regards to medical students’ experience of palliative care. [1] As medical students, who have recently experienced compulsory palliative care teaching during our 4th year, we wished to offer an insight into our experiences on its importance within the curriculum.
During pre-clinical years, there was a lack of emphasis on the holistic perspective of dying patients. The early attention on basic sciences can create the notion that medicine is oriented around ‘fixing people’, with little significance placed on the experience of dying. In the UK, the General Medical Council (GMC) provides guidelines for doctors on the ‘Treatment and care towards the end of life: good practice in decision making’. [2] Hence, a palliative care course is imperative, as it prepares medical students for one of the fundamental parts of medicine: respecting and nurturing the process of dying.
As part of our curriculum we have numerous palliative care days throughout the year. They involved visiting a hospice and speaking to patients, their families and staff, both individually, as well as in small groups. Throughout these days there are numerous activities that aid us to challenge and consider the process of dying. These involved reflective practices to allow students to consider their feelings if they were losing the most valued aspects of their life, as well as talks from family members about their experience of losing loved ones.
The hospice environment and nature of the feedback, discussion and reflection with the tutor can largely influence the outcome of the experience. Thus, the spectrum of experiences amongst students differs depending on these factors, yet we feel that the value of the exposure in a clinical setting cannot be undermined.
The success of the structure and organisation of palliative care teaching within University of Birmingham can be observed as multiple students embark on further experience within palliative care as part of the medical elective and selected career experience modules.
Moreover, the variety of environments within which palliative care occurs is far greater than most medical students assume. We have witnessed the roles of palliative care within primary care, acute medicine and hospice settings. However, we felt that the experience within a hospice, has a far greater impact on our education of palliative medicine. This could be attributed to the unified understanding of the holistic nature of palliative care within hospices that is not always explicitly evident in other medical settings.
In conclusion, we thank Centeno et al. for their work, and support the recommendation that a palliative care course should be a core component for all undergraduate students. The execution of this teaching is vital in successfully dispelling misconceptions of dying and harnessing our approach to ensure patients are holistically cared for in their final stages of life.
References:
1. Centeno C, Ballesteros M, Carrasco JM, Arantzamendi M. Does palliative care education matter to medical students? The experience of attending an undergraduate course in palliative care. BMJ Support Palliat Care. 2016 Mar;6(1):128-34
2. General Medical Council. Treatment and care towards the end of life: good practice in decision making. Available from: https://www.gmc-uk.org/-/media/documents/treatment-and-care-towards-the-... [Accessed 2019 Aug 12].
Dear Editor,
We read the editorial with interest. As they rightly observe, there are important problems prescribing anticipatory syringe drivers. However, we believe there are selected circumstances where it can be an important contribution to timely symptom management, provided all the following are true:
1. There is a foreseeable distressing circumstance that can be unambiguously identified by all of the health professionals seeing the patient (including those out of hours and without ‘specialist’ experience)
2.The medication choice and dose required is similarly foreseeable, unlikely to change, and can be safely initiated by all of the health professionals seeing the patient without additional expertise
3.The initiation of the syringe driver reliably triggers a timely review by an appropriate clinician
4.The patient and/or family is aware of the foreseeable need for a syringe driver, any concerns have been explored by an experienced practitioner and the anticipatory prescription done in accordance with their expressed wishes/preferences to achieve symptom control in their preferred place of care.
Local service design will influence whether or not these criteria can be met. In our locality, patients have access to a community palliative care nurse 24hrs a day, changed circumstances are rapidly fed back by carers in the same community palliative care hub, and changes to regular medication doses can be identified because all community se...
Dear Editor,
We read the editorial with interest. As they rightly observe, there are important problems prescribing anticipatory syringe drivers. However, we believe there are selected circumstances where it can be an important contribution to timely symptom management, provided all the following are true:
1. There is a foreseeable distressing circumstance that can be unambiguously identified by all of the health professionals seeing the patient (including those out of hours and without ‘specialist’ experience)
2.The medication choice and dose required is similarly foreseeable, unlikely to change, and can be safely initiated by all of the health professionals seeing the patient without additional expertise
3.The initiation of the syringe driver reliably triggers a timely review by an appropriate clinician
4.The patient and/or family is aware of the foreseeable need for a syringe driver, any concerns have been explored by an experienced practitioner and the anticipatory prescription done in accordance with their expressed wishes/preferences to achieve symptom control in their preferred place of care.
Local service design will influence whether or not these criteria can be met. In our locality, patients have access to a community palliative care nurse 24hrs a day, changed circumstances are rapidly fed back by carers in the same community palliative care hub, and changes to regular medication doses can be identified because all community services use a single integrated electronic health record. The following examples illustrate situations in which we would consider anticipatory prescribing for patients wishing to remain at home and for symptom relief to be prioritised.
In a patient at risk of recurrence of malignant bowel obstruction, where no further surgical or oncological intervention was possible, a situation can be unambiguously identified (“colicky abdominal pain combined with 2 or more vomits within 24 hrs”), in which the need for specific medication is foreseeable (levomepromazine 6.25mg/24hrs and hyoscine butylbromide 60mg/24hrs). Further, in the context of our integrated team, the need for review can be considered at the following morning’s community hub meeting.
In seizures from cerebral metastases - well controlled with levetiracetam 500mg twice daily - but who is at risk of losing their oral route, a situation can be unambiguously identified (“unable to take their oral levetiracetam”) in which the need for specific medication is foreseeable (“levetiracetam 1000mg/24hrs”). The need for timely review can be similarly considered. In this instance, the shared electronic record can be used by the prescriber to see if another prescriber has altered the oral levetiracetam dose that requires the anticipatory prescription to be amended.
Such anticipatory prescribing is contingent on effective communication within a highly integrated community team. It is our experience that, in selected patients, in such a structure anticipatory prescribing of syringe drivers can provide an important contribution to timely symptom management.
This was a very interesting article. As a professional with frequent intensive care duties early discussions about patient’s wishes are best. Ideally, these should take place away from the acute setting. This is what we always hope to have for our unconscious patients being admitted to the unit.
Unfortunately, these discussions are a bonus rather than routine practice even in end stage disease. Perhaps this partly explains the difference in expectation between the medical team and the family. This leads to management disagreements. It is not uncommon to hear a family “wanting everything doing” for their loved ones in a DNACPR conversation.
In our training we have always been taught that DNACPR is a medical decision. It is good practice nevertheless to communicate any such major management decisions to the family. Nevertheless, there appears to be a move towards completely patient/family centred care. There are multiple occasions a DNACPR is not put in place as the family will not agree, despite a consensus among multiple consultants.
In this climate, with the family often seen as the representative of the patient without capacity, is a DNACPR decision still a medical decision?
I read with interest “Does a one day hospice placement for medical students do more harm than good?” [1]. As a 4th year medical student at The University of Liverpool, and having recently undertaken a 4 week palliative care placement, I would like to weigh in on the themes discussed.
As Ward et al. pointed out, Foundation year 1 doctors (interns) regularly care for patients at the end of life, but undergraduate training is often deficient. Issues around dying and death is one of the most commonly reported sources of junior doctors stress [1][2].
Personal distress from the care of the dying is a factor to burnout; a well-documented condition with detrimental outcomes for healthcare professionals and patients. Given the central reality of death in medicine, it seems paradoxical these issues are not better addressed in undergraduate medical training [2] [3] [4].
The GMC’s publication ‘Tomorrow’s Doctors’, states “Graduates must know and understand the principles of treatment including...palliative care”. Despite this, a systematic review found inconsistent palliative care teaching within undergraduate curriculums. As a result, junior doctors are often unprepared and distressed when caring for palliative care patients [5] [6].
During the 4th year of the MBChB curriculum at The University of Liverpool, students undertake a 4 week palliative care and oncology placement. This consists of three weeks in a local hospice, one week at a specialist cancer hospi...
I read with interest “Does a one day hospice placement for medical students do more harm than good?” [1]. As a 4th year medical student at The University of Liverpool, and having recently undertaken a 4 week palliative care placement, I would like to weigh in on the themes discussed.
As Ward et al. pointed out, Foundation year 1 doctors (interns) regularly care for patients at the end of life, but undergraduate training is often deficient. Issues around dying and death is one of the most commonly reported sources of junior doctors stress [1][2].
Personal distress from the care of the dying is a factor to burnout; a well-documented condition with detrimental outcomes for healthcare professionals and patients. Given the central reality of death in medicine, it seems paradoxical these issues are not better addressed in undergraduate medical training [2] [3] [4].
The GMC’s publication ‘Tomorrow’s Doctors’, states “Graduates must know and understand the principles of treatment including...palliative care”. Despite this, a systematic review found inconsistent palliative care teaching within undergraduate curriculums. As a result, junior doctors are often unprepared and distressed when caring for palliative care patients [5] [6].
During the 4th year of the MBChB curriculum at The University of Liverpool, students undertake a 4 week palliative care and oncology placement. This consists of three weeks in a local hospice, one week at a specialist cancer hospital and three day-long communication skills sessions.
When introduced, a study evaluating the placement found it significantly increased student confidence in palliative care. Since then, the programme has been refined in accordance with the new integrated curriculum. After the placement, 4th year students report feeling better equipped to deal with the emotional toll they face when caring for patients at the end of life [7].
Palliative care placements in the undergraduate medical curriculum - as a core theme - allows medical students to be immersed in the environment and culture. It encourages them to face the difficult but important topics that arise at the end of life. A longer structured clinical placement is one way students can prepare for the difficult and complex situations they will face as junior doctors, to meet GMC requirements and better care for themselves and their patients.
References
1. Ward J, Rayment C, Hallam J. Does a one day hospice placement for medical students do more harm than good? BMJ Supportive & Palliative Care 2019;9:A8.
2. Firth‐Cozens J, Morrison LA. Sources of stress and ways of coping in junior house officers. Stress & Health 1989;5(2):121-126.
3. BMJ. Doctors' emotional reactions to recent death of a patient: cross sectional study of hospital doctors. BMJ 2003;327:185.
4. Moss M, Good VS, Gozal D, Kleinpell R, Sessler CN. An Official Critical Care Societies Collaborative Statement: Burnout Syndrome in Critical Care Health Care Professionals: A Call for Action. AJCC 2016;25(4):368-376.
5. GMC. Tomorrow’s Doctors. GMC 2003 [Cited 26 June 2019]. Available from: https://www.educacionmedica.net/pdf/documentos/modelos/tomorrowdoc.pdf
6. Lloyd-Williams M, Macleod RDM. A systematic review of teaching and learning in palliative care within the medical undergraduate curriculum. Medical Teacher 2004;26(8):683-690.
7. Mason SR, Ellershaw JE. Undergraduate training in palliative medicine: is more necessarily better? Palliative Medicine 2010;24(3):306-309.
Research focusing on quality of life (QoL) in children and adolescents with high-risk malignancy (HRM) is of primary importance. As most of these patients are treated in low and middle income countries1, publications from Central America are of great value. We are thankful to Salaverria et al. for their work addressing this complex and key subject2.
Show MorePatients with HRM were defined by Mahmood et al. as having more than 50% risk of death due to their disease. These patients should receive optimal symptoms management and optimal disease directed therapies to increase both their survival and QoL. To achieve this, the intervention of a specialized pediatric palliative care (PPC) team was proven feasible and effective3, 4. PPC is as a holistic approach that does not exclude cancer directed care and should include the best chemotherapy regimen aiming at optimal QoL and life expectancy.
Salaverria et al. described a prospective cohort of 60 patients suffering from relapsed or refractory leukemia. 44 patients of them died, 39 of whom due to leukemia progression. All Enrolled patients were prospectively followed and assessed for self or proxy-reported QoL with a nearly exhaustive data collection. These results give us a very precise and unprecedented insight into HRM patients’ QoL.
In this sample, all patients received chemotherapy, 65% of patients received specialized PPC at inclusion and 79.5% received specialized PPC in the last month of life. Initial curative in...
Dear Editor,
Show MoreWe read with great interest the article by Curry et al. on the outcomes after venting gastro-/jejunostomy from our own institution.
While venting gastrostomy has a potentially important role to play in cancer palliation, it is offered in only approximately 60% of UK centres. The outcome and patient experience is highly dependent on good tube function. Continuous decompression of the stomach and upper small bowel is essential to alleviate symptoms and stop the development of complications.
Little is published on the technical aspects of the procedure, how to undertake this safely and what the requirements for patient selection and aftercare are. Would the authors please be so kind, as to provide some technical detail to guide the readership?
To our knowledge there are no licensed devices for this purpose. What type of tubes did the authors review (push-PEGs +/- jejunal extension, G-tubes with gastropexy, gastrojejunostomy or transgastric jejunostomy tubes), what was the experience of 4-point gastropexy for GJ-tubes and what size was do they recommend to achieve adequate drainage, bearing in mind that balloon-retained silicone tubes have a much smaller inner lumen than polyurethane PEG tubes?
Our attempts using 20Fr push-PEG tubes led to very poor patient experience, which has been improved by switching to gastro-jejunostomy tubes, as they achieve better drainage due accessing the fluid in the duodenum rather than in the stomach, we...
Title: Cannabinoids impact on insomniacs with chronic pain: how cautious we should be?
Show MoreThis correspondence provides a comment on the recent review article by Humer et al. (Int. J. Mol. Sci. 2020, 21(19), 7244; https://doi.org/10.3390/ijms21197244)
Dear Editor,
From the results of a recent cross-sectional study on patients with insomnia and chronic pain, published in the BMJ Support Palliat Care, Sznitman and colleagues have suggested that Medicinal Cannabis (MC) could have positive effects in sleep maintenance of patients experiencing chronic pain. Since both conditions, insomnia and chronic pain play an important role in the clinical arena, either related to their impact on the quality of life and associated comorbidities, but also because both have high rates of prevalence among the world population. This is a highly relevant finding, however, we believe that it deserves further consideration.
Although insomnia majorly affects patients seeking care in clinics managing patients complaining of persistent pain1, other sleep conditions as obstructive sleep apnea (OSA) could also prevail in similar circumstances2. In fact, comorbid insomnia with sleep apnea (COMISA) frequently occurs and may lead to a more cautious clinical approach since this comorbid condition might have different etiological, pathophysiological, diagnostic, and therapeutic implications. Either Insomnia1 or OSA increases with age, wi...
Interesting reading the article by Sutherland et al [1] on the use of video consultations in palliative care. As a clinician, as an user and advocate of video consultations I entirely agree that telehealth can and must be used as one of the tools of our disposal to be more efficient looking after our patients. There is no doubt workload is a trigger for new models of care.
Nevertheless, the pandemic has not only triggered an explosion in video consultations due to the need to minimise the risk of infection but a change in law in the United Kingdom that allows its full use, as in this country the death certificate includes the statement “Last seen alive by me …. ” and up to now there was a need to see the patient face to face within the last two weeks before death. Now, it is possible to have seen the patient within the last four weeks, and video consultations are considered as an option to face-to-face consultations.
It is argued there will be no return to the old norm, and that many changes brought by the pandemic will remain after it passes. It is hoped telemedicine expansion will remain, but in palliative medicine it will only do if the law changes remain in place.
References
1. Sutherland AE, Stickland J, Wee B. Can video consultations replace face-to-face interviews? Palliative medicine and the Covid-19 pandemic: rapid review. BMJ Supportive & Palliative Care 2020;10:271-275.
I read with interest the paper titled ‘The liminal space palliative care volunteers occupy and their roles within it: a qualitative study’ by Vanderstichelen et al (1) which reported on volunteers who care for terminally ill people. I consider that the authors’ conclusion that these volunteers occupy a liminal space ‘betwixt and between’ staff and family members may be drawn from an incomplete understanding of Turner’s (2) concept of liminality.
Show MoreThe term derives from limen meaning threshold and is used to denote moving across a boundary from one state to another. The model involves three stages: separation, transition (the liminal phase) and (re-) incorporation. Examples include changes in status, such as getting married or gaining majority, or in life-stage, such as birth and death.
I argue that Vanderstichelen et al’s consideration that these volunteers occupy a liminal space ‘betwixt and between’ staff and family members since they provide care which includes aspects of that given by both these ‘conceptually rigid and mutually exclusive domains’ (p. 9) shows that the volunteer role here is ambiguous rather than liminal. While ambiguity is a core feature of liminality as described by Turner and can be applied to the volunteer role – for example, when there are unclear boundaries between volunteer and paid staff roles (3) - the presence of this feature alone does not make the role liminal.
I acknowledge liminality has been used in some organisational li...
We read and agreed with several points in the editorial [1] that accompanied our main research paper about UK clinicians' views on blood transfusion practice [2]. We have additional responses to the editorial.
We recognise the lack of evidence about red cell transfusion within palliative care, which is why we undertook the largest audit of transfusion practice to date [3]. We analysed 465 transfusion episodes over 3 months from 121 UK hospices. Patients were not usually investigated for the anaemia. Of those that were, a significant proportion would have benefited from B12, folate or iron supplements, although rarely used. Despite being at higher risk of transfusion-associated circulatory overload (TACO), risk-mitigation practices like weighing patients or restricting transfusion to one unit (before review), were only undertaken in 15% of patients. In terms of patient benefit only 83 (18%) had improvement maintained at 30 days; 142 (31%) <14 days, and 50 (11%) had none. 150 patients (32%) were dead at 30 days, over double the predicted number.
While documented death rates and major morbidity from red cell transfusion are low in the general population, there is growing evidence of under recognition and under reporting. A study across 157 UK hospitals showed that 4.3% of inpatients >60 years had increasing respiratory distress post-transfusion, but only one-third diagnosed with TACO by the hospital were reported to the SHOT Haemovigilance Group [...
Show MoreDear Editor,
We read with great interest the article by Centeno et al (2016) with regards to medical students’ experience of palliative care. [1] As medical students, who have recently experienced compulsory palliative care teaching during our 4th year, we wished to offer an insight into our experiences on its importance within the curriculum.
During pre-clinical years, there was a lack of emphasis on the holistic perspective of dying patients. The early attention on basic sciences can create the notion that medicine is oriented around ‘fixing people’, with little significance placed on the experience of dying. In the UK, the General Medical Council (GMC) provides guidelines for doctors on the ‘Treatment and care towards the end of life: good practice in decision making’. [2] Hence, a palliative care course is imperative, as it prepares medical students for one of the fundamental parts of medicine: respecting and nurturing the process of dying.
As part of our curriculum we have numerous palliative care days throughout the year. They involved visiting a hospice and speaking to patients, their families and staff, both individually, as well as in small groups. Throughout these days there are numerous activities that aid us to challenge and consider the process of dying. These involved reflective practices to allow students to consider their feelings if they were losing the most valued aspects of their life, as well as talks from family members about th...
Show MoreDear Editor,
Show MoreWe read the editorial with interest. As they rightly observe, there are important problems prescribing anticipatory syringe drivers. However, we believe there are selected circumstances where it can be an important contribution to timely symptom management, provided all the following are true:
1. There is a foreseeable distressing circumstance that can be unambiguously identified by all of the health professionals seeing the patient (including those out of hours and without ‘specialist’ experience)
2.The medication choice and dose required is similarly foreseeable, unlikely to change, and can be safely initiated by all of the health professionals seeing the patient without additional expertise
3.The initiation of the syringe driver reliably triggers a timely review by an appropriate clinician
4.The patient and/or family is aware of the foreseeable need for a syringe driver, any concerns have been explored by an experienced practitioner and the anticipatory prescription done in accordance with their expressed wishes/preferences to achieve symptom control in their preferred place of care.
Local service design will influence whether or not these criteria can be met. In our locality, patients have access to a community palliative care nurse 24hrs a day, changed circumstances are rapidly fed back by carers in the same community palliative care hub, and changes to regular medication doses can be identified because all community se...
This was a very interesting article. As a professional with frequent intensive care duties early discussions about patient’s wishes are best. Ideally, these should take place away from the acute setting. This is what we always hope to have for our unconscious patients being admitted to the unit.
Unfortunately, these discussions are a bonus rather than routine practice even in end stage disease. Perhaps this partly explains the difference in expectation between the medical team and the family. This leads to management disagreements. It is not uncommon to hear a family “wanting everything doing” for their loved ones in a DNACPR conversation.
In our training we have always been taught that DNACPR is a medical decision. It is good practice nevertheless to communicate any such major management decisions to the family. Nevertheless, there appears to be a move towards completely patient/family centred care. There are multiple occasions a DNACPR is not put in place as the family will not agree, despite a consensus among multiple consultants.
In this climate, with the family often seen as the representative of the patient without capacity, is a DNACPR decision still a medical decision?
I read with interest “Does a one day hospice placement for medical students do more harm than good?” [1]. As a 4th year medical student at The University of Liverpool, and having recently undertaken a 4 week palliative care placement, I would like to weigh in on the themes discussed.
Show MoreAs Ward et al. pointed out, Foundation year 1 doctors (interns) regularly care for patients at the end of life, but undergraduate training is often deficient. Issues around dying and death is one of the most commonly reported sources of junior doctors stress [1][2].
Personal distress from the care of the dying is a factor to burnout; a well-documented condition with detrimental outcomes for healthcare professionals and patients. Given the central reality of death in medicine, it seems paradoxical these issues are not better addressed in undergraduate medical training [2] [3] [4].
The GMC’s publication ‘Tomorrow’s Doctors’, states “Graduates must know and understand the principles of treatment including...palliative care”. Despite this, a systematic review found inconsistent palliative care teaching within undergraduate curriculums. As a result, junior doctors are often unprepared and distressed when caring for palliative care patients [5] [6].
During the 4th year of the MBChB curriculum at The University of Liverpool, students undertake a 4 week palliative care and oncology placement. This consists of three weeks in a local hospice, one week at a specialist cancer hospi...
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