We agree with Sleeman and Higginson [1] who emphasised the need to
gather evidence of effectiveness of EPaCCS before widespread and
uncritical adoption by the NHS. An EPaCCS evaluation framework was
recently developed by our team on behalf of end of life commissioners in
Leeds [2]. There was, and remains, a scarcity of guidance on approaches to
gathering evidence for EPaCCS but we identified factors that highlight the
c...
We agree with Sleeman and Higginson [1] who emphasised the need to
gather evidence of effectiveness of EPaCCS before widespread and
uncritical adoption by the NHS. An EPaCCS evaluation framework was
recently developed by our team on behalf of end of life commissioners in
Leeds [2]. There was, and remains, a scarcity of guidance on approaches to
gathering evidence for EPaCCS but we identified factors that highlight the
complexity of EPaCCS evaluation:
1) Most EPaCCS will differ
The principle of EPaCCS, as pointed out by Petrova et al [3] is a
robust one; its aim is to support sharing of up-to-date key information
about patients believed to be in the last year of their life. This feels
like an intuitive approach that could improve care for patients at end of
life. However, as Petrova et al [3] report, fewer than half of England's
clinical commissioning groups have a functioning EPaCCS. Implementation of
EPaCCS systems have led to disparate local approaches to adapting and
embedding EPaCCS templates in electronic medical record systems, across
wide-ranging and diverse multidisciplinary teams. Before conducting our
evaluation in Leeds, we undertook fifteen interviews with health
professionals delivering community care. While intended to inform how
EPaCCS is used in Leeds, it highlighted the diverse approaches to EPaCCS
use; a district nurse opened an EPaCCS for any new patient entering a care
home, a GP created an EPaCCS in response to any referral from a palliative
care team, and a GP opted out of using EPaCCS for an alternative template
that collates similar items. Such diversity in the use of EPaCCS was
occurring locally in one city, despite an intensive citywide training
programme. Furthermore, general practices in Leeds use one of two separate
electronic medical record systems, with slightly different EPaCCS
templates. The EPaCCS templates have also been iteratively developed, with
subsequent changes to the form used in practice. This level of complexity
highlights the need to consider carefully how individual EPaCCS might be
evaluated, in particular how regional or national comparisons and
evaluations are framed.
2) EPaCCS is not static
Our evaluation sought to identify the number of days before death
that items were added to a patient's EPaCCS record. Documented preferences
for DNACPR wishes were recorded a median of 34 days before death, with
EPaCCS records being created a median of 31 days before death. A range of
initiatives for improving documentation of DNACPR wishes had taken place
in Leeds before and during EPaCCS implementation. The crossover in
clinical codes in an EPaCCS template with other items on a patient's
medical record, and the occurrence of parallel service improvement
initiatives limited the extent to which our evaluation could attribute
improvements to EPaCCS.
3) Qualitative work is crucial
Our brief engagement with health professionals prior to the
evaluation highlighted that qualitative work will be essential to
understanding how EPaCCS is currently being used. A recent qualitative
study by Wye et al [4] found that most users of EPaCCS were community
health professionals, which may account for attributions to EPaCCS of
increases in patient home deaths. Qualitative approaches can offer crucial
insights into what is happening on the ground, away from broad claims of
EPaCCS benefits. Engaging with health professionals may also help to
identify why so few eligible patients are being registered on EPaCCS. Wye
et al [4] reported low numbers of patients registered on EPaCCS (9% and
13% in two separate regions), aligned with reports of systems such as
Coordinate My Care achieving 16.6%[3]. In Leeds, 26.8% of all eligible
deaths were recorded. This was calculated using Public Health England data
on the average number of deaths with underlying cause of cancer,
circulatory and respiratory over two years as a denominator. Using these
data may be a useful proxy for patients eligible for EPaCCS, rather than
all patient deaths. However, even with this refined calculation, in-depth
exploration of health professional perspectives is going to be essential
to understand why low numbers of patients are being registered.
4) Enacting change or reporting practice?
A key issue that our evaluation highlighted is the difficulties of
interpreting EPaCCS data. Having separated association from causality, we
considered whether EPaCCS acts to improve practice or whether it documents
and reflects what is already taking place in practice. Where, in our
evaluation, items from an EPaCCS record are entered ahead of the creation
of an EPaCCS template, could health professionals already be capturing
data that is clinically meaningful? Could EPaCCS just be collecting what
is already good practice?
While the principle of EPaCCS is a robust one, generating evidence
around its use and evaluating its impact on information sharing is far
more complex. Without understanding the health professional perspective,
alongside their approaches, motivations and interaction with EPaCCS, it is
difficult to evaluate the effectiveness of the approach. We look forward
to seeing research develop in this area to enable untested assumptions
about the role of EPaCCS to be challenged. It will also hopefully lead to
a better understanding of the cause of low uptake, bringing us closer to
understanding whether EPaCCS can improve the coordination of end of life
care for patients and their caregivers.
1. Sleeman KE and Higginson IJ. Evidence-based policy in palliative
care: time to learn from our mistakes. BMJ Supportive & Palliative
Care 2016 6(4):417. doi: 10.1136/bmjspcare-2016-001250
2. Allsop MJ, Kite S, McDermott S et al. Electronic palliative care
coordination systems: Devising and testing a methodology for evaluating
documentation. Palliative Medicine 2016. doi: 10.1177/0269216316663881
3. 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 Supportive &
Palliative Care 2016. doi: 10.1136/bmjspcare-2015-001059
4. Wye L, Lasseter G, Simmonds B et al. 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. doi: 10.1177/1744987116628922
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.’
Wilson and colleagues are to be commended for their excellent work in exploring mental illnesses and desire for death in patients receiving palliative care with malignancy. [1] The piece thoughtfully explores the prevalence of depression, anxiety and mood disorders and the association between these diagnoses and a standardized quantification of the patient's desire for death. In all, the authors found that 30.5% of participants e...
Wilson and colleagues are to be commended for their excellent work in exploring mental illnesses and desire for death in patients receiving palliative care with malignancy. [1] The piece thoughtfully explores the prevalence of depression, anxiety and mood disorders and the association between these diagnoses and a standardized quantification of the patient's desire for death. In all, the authors found that 30.5% of participants experienced transient desire for death, and 12.2% of patients with a more pervasive and genuine wish that was described as "moderate", "strong", "severe", or "extreme."
Several aspects of these findings warrant comment. First, the authors report that it appears that those without a serious desire for death and without mental disorder seemed to be "coping well and achieving optimal palliative care outcomes." While I agree with this assessment and hope that the palliative care intervention contributed, in part, to this lesser distress, it remains unclear if the palliative care is helping in the situation, or if this results from coincidence or participation bias. Conversely, those participants with serious desire for death and current mental illness were noted to be experiencing a more difficult course despite palliative care intervention. This begs the question as to how such concerns were addressed aggressively by the interdisciplinary palliative care team yet still persisted.
Perhaps most critical are the findings that relate to the possibility of desire for death, mental disorder, and request for or completion of physician-assisted death in this population. The authors report data from the Netherlands where patients with depression and underlying psychological disorders, and concomitant terminal illness, are more likely to have their request for physician assisted death denied (citing 3 studies). [1] However, it is difficult to determine if practices have changed substantially over the past two years since their report was completed and now published in print. Furthermore, it can be challenging to tease out the research facts and findings at a population level, and extrapolate this information to the individual case level.
Indeed, in other recent analysis by Kim, De Vries and Peteet published electronically late in 2015, the authors reviewed 66 cases in the Netherlands where psychiatric conditions led to request and granting of euthanasia or assisted death for patients with purely psychiatric conditions [2] and not concurrent malignancy as was the case in Wilson and colleagues' paper. In Emanuel and colleagues' review of characteristics of euthanasia and physician-assisted suicide cases across the United States (in jurisdictions where legal), the Netherlands and Belgium, it was notable that 4.6% of all deaths in Belgium results from euthanasia, including 12% of those cases fitting into the "mental" health indication profile. [3]
Although euthanasia is not legal in the United States, discussion about physician assisted suicide are ongoing in many states, as well as in Canada. Discussions about the practice of physician assisted death are often extrapolated from the European experience, which frequently serves as the basis for policy discussion among North American clinicians and lawmakers. Credible media reports of euthanasia for "unbearable psychological suffering" have been openly reported in cases in Belgium [4] and Dignitas has reported provision of aid-in-dying to patients with underlying mental illness in Switzerland. [5] The data in aggregate from Kim and colleagues, and Emanuel and colleagues, suggest that these cases in the media are not necessarily rare or sporadic, but may be part of a small but regular population who seek hastened death and have their requests granted. While Wilson and colleagues suggest the possibility of "hesitation when [euthanasia or physician-assisted suicide are] used to relieve their expression of despair", the data in aggregate may suggest otherwise, and that heightened scrutiny of hastened death for individuals with concurrent mental disorders may not actually be the case.
References:
1. Wilson KG, Dalgleis TL, Chochinov HM et al. Mental disorders and the desire for death in patients receiving palliative care for cancer. BMJ Support Palliat Care 2016;6:170-177 doi:10.1136/bmjspcare-2013-000604
2. Kim SYH, De Vries RG, Peteet JR. Euthanasia and Assisted Suicide of Patients With Psychiatric Disorders in the Netherlands 2011 to 2014. JAMA Psychiatry. 2016;73:362-368.
3. Emanuel EJ, Onwuteaka-Philipsen BD, Urwin JW, Cohen J. Attitudes and Practices of Euthanasia and Physician-Assisted Suicide in the United States, Canada, and Europe. JAMA. 2016;316:79-90.
4. Euthanasia twins 'had nothing to live for'. The Telegraph. Available at http://www.telegraph.co.uk/news/worldnews/europe/belgium/9801251/Euthanasia-twins-had-nothing-to-live-for.html Accessed July 14, 2016
5. Suicide-Clinic Entrepreneur: Depressed? 'We Never Say No'. Available at http://www.wnd.com/2006/04/35738/#! Accessed July 14, 2016
British and European palliative care physicians are not alone in
their concerns and reluctance to participate in Physician Assisted
Suicide/Euthanasia. Canadian Palliative care physicians struggle with this
issue as well.
In 2010, the Canadian Society of Palliative Care physicians (300 members)
were surveyed. (1) The questions were specific: "Are you for or against
PAS/Euthanasia?" "Would you provide assisted suicide?" "W...
British and European palliative care physicians are not alone in
their concerns and reluctance to participate in Physician Assisted
Suicide/Euthanasia. Canadian Palliative care physicians struggle with this
issue as well.
In 2010, the Canadian Society of Palliative Care physicians (300 members)
were surveyed. (1) The questions were specific: "Are you for or against
PAS/Euthanasia?" "Would you provide assisted suicide?" "Would you provide
Euthanasia?" Forty-six percent of the membership responded to the survey.
The overwhelming majority was opposed to the legalization of euthanasia
(88%) or assisted suicide (80%). Ninety percent of responding members
would not be willing to participate in the act of euthanasia and 83% of
responding members would not be willing to aid in assisted suicide.
The Society followed with another survey in 2015 in response to the
growing public interest and in anticipation of a Supreme Court Ruling. The
January 2015 survey (350 members with a 74% response rate) indicated that
the majority of the membership was still opposed to legalization of
euthanasia (73%) or assisted suicide (69%). The majority (74%) believe
that euthanasia and physician assisted suicide, if legalized, should not
be provided by palliative care services or palliative care physicians. (2)
The Carter Decision (Carter v. Canada (Attorney General), 2015 SCC 5)
struck down the prohibition on assisted suicide, opening the way for new
legislation to enable physician assisted death for people with a "grievous
and irremediable medical condition". (3) There is no mention in the
decision that these people have to be terminally ill, nor are there any
specifications around assessment, restrictions, or processes. This Supreme
Court decision is one of the most liberal in the world. In opening up this
service to people without terminal illnesses it thereby makes this an
issue for all physicians, not just those in palliative care.
Canadian physicians are currently struggling with the implications this
decision has for their practice, their patients and their internal belief
as to what it means to be a physician. While the Canadian Medical
Association has stated that physicians can follow their conscience (4)
this will have to be balanced with the needs of the patients. Health care
in Canada is provincially funded and regulated, meaning that each province
could come up with its own way of providing physician assisted death.
Quebec has already done so. Physicians have urged government to engage in
a thoughtful, inclusive process to create the new laws and medical systems
but with a federal election poised for the fall, little has been heard on
this subject. Provincial Medical Colleges are left, in this void of
legislation, to scramble to come up with rules and regulations for this
new service. As of February 6, 2016, the prohibition against physician
assisted suicide will be gone and potentially no legislation or decisions
around practice will be in place.
Susan MacDonald MD CCFP FCFP
President, Canadian Society of Palliative Care Physicians
Associate Professor of Medicine and Family Medicine, Memorial University
of Newfoundland
Correspondence: Dr. Susan MacDonald, MD, CCFP, FCFP
Faculty of Medicine and Family Medicine, Memorial University
LA Miller Centre, 100 Forest Road
St. John's, NL A1A 1E5 CANADA
We are grateful for the opportunity to respond to Chu and Percy's
interesting comments on our paper. We accept that older and younger age
may be associated with more medical problems in mothers and this could
explain some of the higher mortality in bereaved parents versus non-
bereaved parents, however the increased mortality findings were
demonstrated for fathers as well as mothers. Although the age of the
mother may ex...
We are grateful for the opportunity to respond to Chu and Percy's
interesting comments on our paper. We accept that older and younger age
may be associated with more medical problems in mothers and this could
explain some of the higher mortality in bereaved parents versus non-
bereaved parents, however the increased mortality findings were
demonstrated for fathers as well as mothers. Although the age of the
mother may explain some of the variation, there must be additional factors
which explain some of the excess mortality. Regarding the consolidation of
stillbirth and infant death records, we found that there was no difference
in mortality rates between those who experienced stillbirth and those who
experienced infant death. We therefore felt it was appropriate to combine
the data from these groups. In addition, the association between age of
child at time of death and impact on the parent is far from certain, as
reported by in previous studies such as Anderson (2005), Engelkemeyer
& Marwit (2008) and Hazzard, Weston and Gutterres (1992). We have
additional manuscripts under review which will further support the view
that grief following the loss of a child is unrelated to the age of the
child at the time of their death. Finally, Chu and Percy suggest that an
alternative sampling method would yield more data. The limitation of the
Scottish sample is due to the protocols followed by the Scottish
Longitudinal Study and as such, the authors were restricted to the data
made available by this service. Sampling higher than 5.3% of the Scottish
population is not currently possible, unfortunately.
We thank Chu and Percy for their comments on this research and for their
insight into possible alternative explanations for the excess mortality in
bereaved parents.
References
Anderson, M., Marwit, S. J., Vandenberg, B., & Chibnall, J. (2005).
Psychological and religious coping strategies of mothers bereaved by the
sudden death of a child. Death Studies, 29(9), 811-826.
Engelkemeyer, S., & Marwit, S. J. (2008). Posttraumatic growth in
bereaved parents. Journal of Traumatic Stress, 21(3), 344-346.
Hazzard, A., Weston, J., & Gutterres, C. (1992). After A Childs Death
- Factors Related to Parental Bereavement. [6-50 months]. Journal of
Developmental and Behavioral Pediatrics, 13(1), 24-30.
We agree with Sleeman and Higginson [1] who emphasised the need to gather evidence of effectiveness of EPaCCS before widespread and uncritical adoption by the NHS. An EPaCCS evaluation framework was recently developed by our team on behalf of end of life commissioners in Leeds [2]. There was, and remains, a scarcity of guidance on approaches to gathering evidence for EPaCCS but we identified factors that highlight the c...
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...
Show MoreBritish and European palliative care physicians are not alone in their concerns and reluctance to participate in Physician Assisted Suicide/Euthanasia. Canadian Palliative care physicians struggle with this issue as well. In 2010, the Canadian Society of Palliative Care physicians (300 members) were surveyed. (1) The questions were specific: "Are you for or against PAS/Euthanasia?" "Would you provide assisted suicide?" "W...
We are grateful for the opportunity to respond to Chu and Percy's interesting comments on our paper. We accept that older and younger age may be associated with more medical problems in mothers and this could explain some of the higher mortality in bereaved parents versus non- bereaved parents, however the increased mortality findings were demonstrated for fathers as well as mothers. Although the age of the mother may ex...
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