As the lead of a Marie Curie funded study of EPaCCS, I welcome the
attention that electronic palliative care systems are increasingly
receiving. However unlike Petrova et al, I believe the "striking" EPaCCS
results on facilitating home deaths mentioned by Petrova et al may largely
be explained by selection bias.
In our mixed methods study, we too found impressive results in that
those with an electronic EPaCCS...
As the lead of a Marie Curie funded study of EPaCCS, I welcome the
attention that electronic palliative care systems are increasingly
receiving. However unlike Petrova et al, I believe the "striking" EPaCCS
results on facilitating home deaths mentioned by Petrova et al may largely
be explained by selection bias.
In our mixed methods study, we too found impressive results in that
those with an electronic EPaCCS record were 70-78% more likely to die in
the community compared to those without. However, analysis of EPaCCS
databases and qualitative interviews with over 100 hospital and community
professionals revealed that EPaCCS was almost exclusively used by
community professionals working with those who intended to die at home. So
if only community professionals register only patients being cared for in
the community, the "striking" result of patients dying in the community is
unsurprising.
This paper was dismissed by Petrova et al as suffering from
methodological flaws, yet the nature of these flaws were not described in
the Petrova paper nor were the authors able to provide us with these
details. Readers wanting to make up their own mind should look up
Electronic palliative care coordinating systems (EPaCCS) may not
facilitate home deaths DOI: 10.1177/1744987116628922 (1).
Our paper is not the only one to raise doubts about the impact of
EPaCCS on home deaths. A recent independent national study using mixed
methods also concluded that there was no conclusive evidence of impact on
place of death between EPaCCS and non-EPaCCS sites (2). Thus two
independent evaluations have raised queries about the heralded effect of
EPaCCS on home deaths.
All four authors of the Petrova et al paper rightly declare that
every one of them is partly funded by EPaCCS projects. I do not believe
that this conflict of interest meant that they intentionally ignored more
negative studies. In fact they inform us that the inclusion of our paper
provoked extensive debate. But, as we point out in our paper, by only
focusing on quantitative data in evaluating EPaCCS and not collecting
qualitative data, misleading conclusions can easily drawn.
1. Wye L, Lasseter G, Simmonds B, Duncan L, Percival J, Purdy S.
Electronic palliative care coordinating systems (EPaCCS) may not
facilitate home deaths: A mixed methods evaluation of end of life care in
two English counties. Journal of Research in Nursing 2016; 21(2): 96-107.
2. Whole Systems Partnership. Independent evaluation of Electronic
Palliative Care Coordination Systems (EPaCCS) in England FINAL REPORT,
2016.
The article by Petrova et al is timely and thought provoking.1 EPaCCS
(Electronic Palliative Care Coordination Systems) have good face value:
they appear so obviously a good idea. But scratch beneath the surface, as
Petrova and colleagues have done, and important challenges in public
perceptions, funding, information governance, context and health care IT
become apparent.
The article by Petrova et al is timely and thought provoking.1 EPaCCS
(Electronic Palliative Care Coordination Systems) have good face value:
they appear so obviously a good idea. But scratch beneath the surface, as
Petrova and colleagues have done, and important challenges in public
perceptions, funding, information governance, context and health care IT
become apparent.
EPaCCS are electronic information systems that aim to improve
coordination and communication through the recording and sharing of
important information about patients' clinical condition and treatment
decisions. All interventions may have benefits and harms, some of which
are predictable, others less so.2 As noted by Petrova and colleagues,
there is currently very little published evidence on the benefits, or the
harms, of EPaCCS. This evidence is needed to tell us what the key
components of any EPaCCS system are, and the contextual factors important
for their successful implementation. It should include comparative data
to determine effectiveness according to patient-centred outcomes, as well
as qualitative data to provide information on how the intervention is
working, which should be sought from patients, carers, and health care
professionals.
It is essential that we gather this evidence now, before EPaCCS are
rolled out more widely. If we miss this opportunity we may find ourselves
in a familiar Catch 22 situation whereby it is then impossible to test the
effectiveness in a comparative trial.3 In addition, without a better
understanding of the effects and key components of EPaCCS in the different
contexts in which they operate, roll out could miss key ingredients,
without which patients and families are not maximally benefitted. In light
of the Government's recent commitment to roll out EPaCCS to the majority
of the UK by 2018,4 acquisition of this evidence must be a funding
priority.
There is no doubt that EPaCCS have the potential to improve care for
the dying. Research is urgently needed to determine whether or not this is
the case, and what needs to be in place to maximise benefit and avoid
harm, before wider roll out makes acquisition of the necessary evidence
impossible. It is inconceivable that a novel chemotherapy would gain
regulatory approval just because Phase I studies looked promising. We have
an opportunity now to gather the evidence we need to determine the
benefits and potential harms of EPaCCS. We must not waste it.
1. Petrova M, Riley J, Abel J, et al. Crash course in EPaCCS
(Electronic Palliative Care Coordination Systems): 8 years of successes
and failures in patient data sharing to learn from. BMJ Support Palliat
Care 2016.
2. Currow DC, Higginson I. Time for a prospective study to evaluate
the Amber Care Bundle. BMJ Support Palliat Care 2013;3(4):376-7.
3. Sleeman KE. The Liverpool Care Pathway: benefit or harm? J R Coll
Physicians Edinb 2014;44(3):214-5.
4. Department of Health. Our Commitment to you for end of life care.
The Government Response to the Review of Choice in End of Life Care.
London: DH; 2016.
Hiccups, also known as singultus, is an involuntary spastic contraction of the diaphragm and intercostal muscles that leads to inspiration of air, followed by abrupt glottic closure.1 They can be classified based on duration: bouts (up to 48 hours); persistent (48 hours to 1 month); intractable (more than 1 month) and recurrent.2 Through its constant interruptive nature hiccups can have serious consequences, including dehydration, fatigue, insomnia, lower quality of life, malnutrition, psychological stress, and weight loss.1
The cause can be peripheral or central. Peripheral causes are from irritation to the phrenic or vagus nerve. Central causes can be divided into neurological, like cerebrovascular accident, brain trauma, intracranial tumor, non-neurological conditions (e.g., infections), multiple sclerosis, and Parkinson’s syndrome.3 In our case the exact reason for hiccups was unknown but most likely brain metastasis.
A 47-year-old gentleman with stage IV non-small cell carcinoma of lung, with progressive lung and bone metastasis, was admitted with worsening hiccups, pain, and vomiting. He was initially started on metoclopramide 40mg IV over 24 hours; dose was increased to 60mg with no benefit and later oral baclofen added (10mg three times a day).4 The hiccups responded to baclofen but his sensorium deteriorated likely due to disease progression. He was unable to take oral medications or tolerate nasogastric tube insertion. Since baclofen is available only...
Hiccups, also known as singultus, is an involuntary spastic contraction of the diaphragm and intercostal muscles that leads to inspiration of air, followed by abrupt glottic closure.1 They can be classified based on duration: bouts (up to 48 hours); persistent (48 hours to 1 month); intractable (more than 1 month) and recurrent.2 Through its constant interruptive nature hiccups can have serious consequences, including dehydration, fatigue, insomnia, lower quality of life, malnutrition, psychological stress, and weight loss.1
The cause can be peripheral or central. Peripheral causes are from irritation to the phrenic or vagus nerve. Central causes can be divided into neurological, like cerebrovascular accident, brain trauma, intracranial tumor, non-neurological conditions (e.g., infections), multiple sclerosis, and Parkinson’s syndrome.3 In our case the exact reason for hiccups was unknown but most likely brain metastasis.
A 47-year-old gentleman with stage IV non-small cell carcinoma of lung, with progressive lung and bone metastasis, was admitted with worsening hiccups, pain, and vomiting. He was initially started on metoclopramide 40mg IV over 24 hours; dose was increased to 60mg with no benefit and later oral baclofen added (10mg three times a day).4 The hiccups responded to baclofen but his sensorium deteriorated likely due to disease progression. He was unable to take oral medications or tolerate nasogastric tube insertion. Since baclofen is available only as tablets, oral solutions or intra thecal injection, based on previous reports,5 we gave intrathecal (IT) baclofen solution as a subcutaneous (S/C) infusion. We started a dose of 10 mg baclofen over 24 hours. A 20ml vial (10mg) was diluted with 16 ml of 0.9% saline and given through a pump at 1.5ml per hour that delivered baclofen at 0.42mg per hour.5,6 Hiccups improved in 24 hours with reduction in frequency; within 48 hours he was symptom free. Due to non-availability of the baclofen intrathecal solution we had to discontinue this after 3 days, and he was started on midazolam infusion during the last days of his life.
Baclofen is a centrally acting muscle relaxant and antispasmodic. Because of its high oral bioavailability we assumed the initial SC dose would be about the same as after oral administration.5 Baclofen is well absorbed by mouth; bioavailability is 85-90% and peak concentration achieved after 1.5 hours. 70-80% is primarily excreted through the kidneys. Half-life is 2.5–4 hr.7
The exact mechanism of action is still unclear. It inhibits both monosynaptic and polysynaptic spinal reflexes, probably by hyperpolarization of afferent terminals. Actions at supraspinal sites may also occur. Baclofen is GABA mimetic thereby inhibiting the release of excitatory neurotransmitters glutamate and aspartate, in spinal and supraspinal levels and acts as antispasmodic.8
Treatment of hiccups is based on the underlying cause, which in palliative care is usually multifactorial. Most other medications for hiccups act via dopaminergic or GABAergic pathways which include benzodiazepines, chlorpromazine, gabapentin, haloperidol, and metoclopramide. Palliative care patients at end of life are often treated with midazolam. If intractable hiccups are of central origin, baclofen is recommended as first line treatment1 and this is supported by a randomized controlled trial.9 Second-line agents include gabapentin, haloperidol, methylphenidate, and nimodipine. In the last days of life, consideration should also be given to midazolam by subcutaneous infusion for intractable hiccups. Non-pharmacological and interventional treatments may be effective and include radiofrequency phrenic nerve ablation, transesophageal diaphragmatic pacing, and acupuncture. Acupuncture is slightly more effective than conventional treatments.10
Intrathecal baclofen solution was administered subcutaneously over a short period of time. It was well tolerated with almost complete resolution of hiccups with no adverse effects. This case report also suggests that S/C baclofen can be used effectively when enteral routes are unavailable.
References
1. Jeon YS, Kearney AM, Baker PG: Management of hiccups in palliative care patients. BMJ Support Palliat Care 8:1-6, 2018
2. Goyal A, Mehmood S, Mishra S, et al: Persistent hiccups in cancer patient: a presentation of syndrome of inappropriate antidiuretic hormone induced hyponatremia. Indian J Palliat Care 19:110-2, 2013
3. Kobayashi Z, Tsuchiya K, Uchihara T, et al: Intractable hiccup caused by medulla oblongata lesions: a study of an autopsy patient with possible neuromyelitis optica. J Neurol Sci 285:241-5, 2009
4. Burke AM, White AB, Brill N: Baclofen for intractable hiccups. N Engl J Med 319:1354, 1988
5. Remi C, Albrecht E: Subcutaneous use of baclofen. J Pain Symptom Manage 48:e1-3, 2014
6. Myles H, Cranfield F: P-119 Use of BACLOFEN in a continuous subcutaneous infusion, British Medical Journal Publishing Group, 2017
7. Twycross RW, Andrew Howard, Paul: Palliative Care Formulary (PCF5). United Kingdom, palliative drugs.com, 2015 pp. 593-594
8. Ramirez FC, Graham DY: Treatment of intractable hiccup with baclofen: results of a double-blind randomized, controlled, cross-over study. Am J Gastroenterol 87:1789-91, 1992
9. Zhang C, Zhang R, Zhang S, et al: Baclofen for stroke patients with persistent hiccups: a randomized, double-blind, placebo-controlled trial. Trials 15:295, 2014
10. Choi TY, Lee MS, Ernst E: Acupuncture for cancer patients suffering from hiccups: a systematic review and meta-analysis. Complement Ther Med 20:447-55, 2012
Elizabeth Davies uses palliative care "to explore the potential use of poetry in healthcare". And indeed its use can be much wider. As she points out, "For those who enjoy reading poetry, discussing or writing it can become a means of expressing emotion, making sense of events and putting a biographical story togerther."
That was my experience following the deaths, in a motor vehicle accident, of my eldest son Marcus and his partner Rachael. Verse written, wept over, and repeatedly revised during the year after their deaths was, I'm sure, helpful in my coming to accept, at a 'gut level' as well as intellectually, what had happened.
And it wasn't helpful just to me. When a selection of the verse (1) was published to raise money for a trust in memory of Marcus and Rachael, it also proved useful to some who had suffered similar bereavement, perhaps because the writer had experienced the same hell as them:
"but our souls too
are pierced by a sword." (2)
(1) 'As Well as Joy - Elegies for Marcus and Rachael'; Rachael Gloag and Marcus Fitchett Memorial Medical Education Trust, Dunedin, 1998
(2) Ib.; p. 40. 'The Feast of the Presentation of Jesus in the Temple'.
Many thanks for this interesting article which overviews the historical and social developments in the Western world. With respect to definition of communities in the context of compassionate communities, we defined quite specifically what this is in our article Circles of care: should community development redefine the practice of palliative care?Abel J, et al. BMJ Supportive & Palliative Care 2013;3:383–388. doi:10.1136/bmjspcare-2012-000359. Communities exist in the context of inner and outer networks, supported by the surrounding community. These networks are no longer defined by geographical boundaries as there are forms of support involving digital technology. Support is given in many ways and it is the resilience of these community networks that makes an enormous difference at end of life, as explained by Horsfall et al in their research End of life at home: Co-creating an ecology of care
D Horsfall, A Yardley, R Leonard, K Noonan… - 2015 - researchdirect.westernsydney.edu …
In McCaughan’s qualitative study,(1) I was drawn by two themes identified from interviews with clinicians and relatives of patients with haematological cancers: ‘mismatch between the expectations and reality of home death’ and ‘a preference for hospital death.’ This challenges the established dogma that most people would wish to die at home, if they had the choice.(2)
The paper goes on to posit reasons, namely that patients with haematological cancers can have complicated clinical trajectories, with difficult-to-manage symptoms towards the end of life. Whilst this is true, it can also be more broadly applied to many terminal disease trajectories, in which single organ failure can progress to multi-organ involvement, brittle health and the risk of sudden deterioration. This can be frightening for both the patient and their close ones, hence an emergency call and blue light to A&E. Inpatient symptom control and support may then ineluctably become inpatient terminal care.
In fact, desire for a home death is likely an overstated assertion, particularly as people approach the terminal phase of illness,(3) and particularly in conditions other than cancer.(4) The ideal of a home death may be very different to the reality of managing complex symptoms without the 24-hour access to medical professionals or support available in a hospital or hospice.
The National End of Life Care Intelligence Network identifies death in the ‘usual place of residence’ (home...
In McCaughan’s qualitative study,(1) I was drawn by two themes identified from interviews with clinicians and relatives of patients with haematological cancers: ‘mismatch between the expectations and reality of home death’ and ‘a preference for hospital death.’ This challenges the established dogma that most people would wish to die at home, if they had the choice.(2)
The paper goes on to posit reasons, namely that patients with haematological cancers can have complicated clinical trajectories, with difficult-to-manage symptoms towards the end of life. Whilst this is true, it can also be more broadly applied to many terminal disease trajectories, in which single organ failure can progress to multi-organ involvement, brittle health and the risk of sudden deterioration. This can be frightening for both the patient and their close ones, hence an emergency call and blue light to A&E. Inpatient symptom control and support may then ineluctably become inpatient terminal care.
In fact, desire for a home death is likely an overstated assertion, particularly as people approach the terminal phase of illness,(3) and particularly in conditions other than cancer.(4) The ideal of a home death may be very different to the reality of managing complex symptoms without the 24-hour access to medical professionals or support available in a hospital or hospice.
The National End of Life Care Intelligence Network identifies death in the ‘usual place of residence’ (home, care home or religious establishment) as a key performance indicator (KPI) and thus a proxy marker for good quality terminal care.(5) McCaughan’s article discusses why this quality indicator is not met in one disease subset. I propose that the focus should instead be as follows. Firstly, individuals approaching the end of life should be provided with the appropriate information to allow them to make their own informed decision on preferred place of death. ‘Preferred place of death’ rather than ‘usual place of residence’ – even if the latter remains to be the most popular choice – may then be a more suitable KPI. Secondly, we must strive for the best possible care in each setting. For those with complex symptomatic needs not currently practical to manage in the community, or for those who do find themselves to be in hospital near the end of life, it seems paramount that we develop inpatient services to enable ‘a good death in hospital.’
As the lead of a Marie Curie funded study of EPaCCS, I welcome the attention that electronic palliative care systems are increasingly receiving. However unlike Petrova et al, I believe the "striking" EPaCCS results on facilitating home deaths mentioned by Petrova et al may largely be explained by selection bias.
In our mixed methods study, we too found impressive results in that those with an electronic EPaCCS...
The article by Petrova et al is timely and thought provoking.1 EPaCCS (Electronic Palliative Care Coordination Systems) have good face value: they appear so obviously a good idea. But scratch beneath the surface, as Petrova and colleagues have done, and important challenges in public perceptions, funding, information governance, context and health care IT become apparent.
EPaCCS are electronic information system...
Hiccups, also known as singultus, is an involuntary spastic contraction of the diaphragm and intercostal muscles that leads to inspiration of air, followed by abrupt glottic closure.1 They can be classified based on duration: bouts (up to 48 hours); persistent (48 hours to 1 month); intractable (more than 1 month) and recurrent.2 Through its constant interruptive nature hiccups can have serious consequences, including dehydration, fatigue, insomnia, lower quality of life, malnutrition, psychological stress, and weight loss.1
Show MoreThe cause can be peripheral or central. Peripheral causes are from irritation to the phrenic or vagus nerve. Central causes can be divided into neurological, like cerebrovascular accident, brain trauma, intracranial tumor, non-neurological conditions (e.g., infections), multiple sclerosis, and Parkinson’s syndrome.3 In our case the exact reason for hiccups was unknown but most likely brain metastasis.
A 47-year-old gentleman with stage IV non-small cell carcinoma of lung, with progressive lung and bone metastasis, was admitted with worsening hiccups, pain, and vomiting. He was initially started on metoclopramide 40mg IV over 24 hours; dose was increased to 60mg with no benefit and later oral baclofen added (10mg three times a day).4 The hiccups responded to baclofen but his sensorium deteriorated likely due to disease progression. He was unable to take oral medications or tolerate nasogastric tube insertion. Since baclofen is available only...
Elizabeth Davies uses palliative care "to explore the potential use of poetry in healthcare". And indeed its use can be much wider. As she points out, "For those who enjoy reading poetry, discussing or writing it can become a means of expressing emotion, making sense of events and putting a biographical story togerther."
That was my experience following the deaths, in a motor vehicle accident, of my eldest son Marcus and his partner Rachael. Verse written, wept over, and repeatedly revised during the year after their deaths was, I'm sure, helpful in my coming to accept, at a 'gut level' as well as intellectually, what had happened.
And it wasn't helpful just to me. When a selection of the verse (1) was published to raise money for a trust in memory of Marcus and Rachael, it also proved useful to some who had suffered similar bereavement, perhaps because the writer had experienced the same hell as them:
"but our souls too
are pierced by a sword." (2)
(1) 'As Well as Joy - Elegies for Marcus and Rachael'; Rachael Gloag and Marcus Fitchett Memorial Medical Education Trust, Dunedin, 1998
(2) Ib.; p. 40. 'The Feast of the Presentation of Jesus in the Temple'.
Many thanks for this interesting article which overviews the historical and social developments in the Western world. With respect to definition of communities in the context of compassionate communities, we defined quite specifically what this is in our article Circles of care: should community development redefine the practice of palliative care?Abel J, et al. BMJ Supportive & Palliative Care 2013;3:383–388. doi:10.1136/bmjspcare-2012-000359. Communities exist in the context of inner and outer networks, supported by the surrounding community. These networks are no longer defined by geographical boundaries as there are forms of support involving digital technology. Support is given in many ways and it is the resilience of these community networks that makes an enormous difference at end of life, as explained by Horsfall et al in their research End of life at home: Co-creating an ecology of care
D Horsfall, A Yardley, R Leonard, K Noonan… - 2015 - researchdirect.westernsydney.edu …
In McCaughan’s qualitative study,(1) I was drawn by two themes identified from interviews with clinicians and relatives of patients with haematological cancers: ‘mismatch between the expectations and reality of home death’ and ‘a preference for hospital death.’ This challenges the established dogma that most people would wish to die at home, if they had the choice.(2)
The paper goes on to posit reasons, namely that patients with haematological cancers can have complicated clinical trajectories, with difficult-to-manage symptoms towards the end of life. Whilst this is true, it can also be more broadly applied to many terminal disease trajectories, in which single organ failure can progress to multi-organ involvement, brittle health and the risk of sudden deterioration. This can be frightening for both the patient and their close ones, hence an emergency call and blue light to A&E. Inpatient symptom control and support may then ineluctably become inpatient terminal care.
In fact, desire for a home death is likely an overstated assertion, particularly as people approach the terminal phase of illness,(3) and particularly in conditions other than cancer.(4) The ideal of a home death may be very different to the reality of managing complex symptoms without the 24-hour access to medical professionals or support available in a hospital or hospice.
The National End of Life Care Intelligence Network identifies death in the ‘usual place of residence’ (home...
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