Thinking of having your death at home? Got lots of questions?
NST (National Soulbirth Trust)
Oh, oh, bring it to me
Bring me sweet dyin'
Bring it on home to me, oh yeah
paraphrased from 'Bring it on Home' - Sam Cooke
This is BMJ Supportive
& Palliative Care with
a study demonstrating the
Conclusions Home-based end-of-life care offers the potential to reduce demand for acute hospital care and increase the number of people able to die at home.
There is a problem of assumption with this study.
Your study concludes that home-based end of life care offers the potential to reduce demand for acute hospital care and increase the number of people able to die at home. Logically, that would and should be the case and your research confirms this to be so.
May I ask what was the trajectory of the outcomes of your sample populations?
The home-based population will have been placed on a Pathway as a matter of protocol under MCNS care. The comparison population may or may not have been.
The former group will less likely and unlikely have been the subject of interventions. They would not have been sought.
Interventions may or may not have been sought or undertaken in the latter group, but it is more likely and most likely to have been the case.
May I ask, please, what was the clinical journey of the one population in comparison with the other?
Regards,
Les Doe
The Cochrane review produces a like outcome to that of the published BMJ study. This is Cicely Saunders Institute -
It attempts to show and succeeds in showing that a home-based
EoLC programme will have an outcome of an increase in the number of people
dying at home, in their own surroundings. On paper, that may sound fine, but what does this mean?
When you stumble and fall, the usual assumption is that someone will help you to your feet and provide succour and support to aid you on your journey. It is an expectation. EoLC does not do this. The directive is to make you 'comfortable' where you have fallen.
When you stumble and fall, the usual assumption is that someone will help you to your feet and provide succour and support to aid you on your journey. It is an expectation. EoLC does not do this. The directive is to make you 'comfortable' where you have fallen.
There are other factors to consider,
then, if proper comparison is to be made between the two population samples to
provide a broader picture of what is going on. That will determine the basis and validity of the study. That will directly affect what
conclusions we draw.
I have contacted the author at his
email provided on the study document. I wish to express my gratitude to Mr.
Bardsley for kindly responding -
BMJ Submission
RE: Effect of a home-based end-of-life nursing service on hospital use at the end of life and place of death: a study using administrative data and matched controls
Your study concludes that home-based end of life care offers the potential to reduce demand for acute hospital care and increase the number of people able to die at home. Logically, that would and should be the case and your research confirms this to be so.
May I ask what was the trajectory of the outcomes of your sample populations?
The home-based population will have been placed on a Pathway as a matter of protocol under MCNS care. The comparison population may or may not have been.
The former group will less likely and unlikely have been the subject of interventions. They would not have been sought.
Interventions may or may not have been sought or undertaken in the latter group, but it is more likely and most likely to have been the case.
May I ask, please, what was the clinical journey of the one population in comparison with the other?
Regards,
Les Doe
RE: BMJ Submission
Dear Les
Thank you for the question.
One of the disadvantages in using these large data sets is that we don't know much about the detail of care that was received by control patients.
We selected them based on matching them on a range of variables (including being near the end of life) so they were similar to our study group (aside from the Marie Curie input)
But aside from these matching variables all we can say is that they are representative of what was happening elsewhere in the country.
One of the disadvantages in using these large data sets is that we don't know much about the detail of care that was received by control patients.
We selected them based on matching them on a range of variables (including being near the end of life) so they were similar to our study group (aside from the Marie Curie input)
But aside from these matching variables all we can say is that they are representative of what was happening elsewhere in the country.
Best wishes
Martin Bardsley
Martin Bardsley responds that the sample groups were ‘representative
of what was happening elsewhere in the country'.
The assumption of ‘being near the end
of life’ means absolutely nothing; it is a statement without any scientific basis to make. Still, these determinations are made and diagnoses of dying are pronounced by those who have been 'trained' to determine this.
Elsewhere in the country, a home-based population under MCNS care will have had as its focus the palliative rather than the curative option. When there is a determination to make provision for a home death, it is self-evident that a dedicated home-based EoLC team is a good bet to achieve just that outcome.
Based on that assumption, lives will have, undoubtedly, been shortened. The clinical journey of the home-based population is plainly obvious, therefore.
Elsewhere in the country, the comparison population will have had access to curative options - assuming these were not denied to them. Lives may or may not have been shortened, taken on pathways. The clinical journey is not obvious.
The study has focussed on the place of death when that is not actually the bigger picture.
Elsewhere in the country, a home-based population under MCNS care will have had as its focus the palliative rather than the curative option. When there is a determination to make provision for a home death, it is self-evident that a dedicated home-based EoLC team is a good bet to achieve just that outcome.
Based on that assumption, lives will have, undoubtedly, been shortened. The clinical journey of the home-based population is plainly obvious, therefore.
Elsewhere in the country, the comparison population will have had access to curative options - assuming these were not denied to them. Lives may or may not have been shortened, taken on pathways. The clinical journey is not obvious.
The study has focussed on the place of death when that is not actually the bigger picture.
The Cochrane review produces a like outcome to that of the published BMJ study. This is Cicely Saunders Institute -
In addition, based on narrative synthesis, the authors found evidence that home palliative care services reduce symptom burden for patients, compared to usual care. Although this effect was relatively small, it was statistically significant in three out of four studies that measured this outcome for patients (with the fourth study reporting a trend towards significance in the same direction). Moreover, two of these studies showed not only a significant difference between usual care and home palliative care but an inversion of trajectory. This means that while symptom burden increased over time for patients who received usual care, those receiving home palliative care experienced less symptom burden as their illness progressed.
What does this mean? It means that where the focus is EoLC and to consign the patient on the Pathway, that focus will be on provision of drug interventions to eliminate symptom presentation.
However, despite the fact that
The real benefits, as Professor Irene J Higginson, Director of the Cicely Saunders Institute, correctly points out:
- the authors found evidence that home palliative care services reduce symptom burden for patients, compared to usual care. Although this effect was relatively small
- the review authors also reported areas where there were conflicting findings. This includes the impact of home palliative care on specific symptoms such as pain, breathlessness and sleep disturbance, caregiver burden and psychological well-being, patients’ and family caregivers’ satisfaction with care and overall palliative care outcomes.
- There was moderate evidence of no impact on several outcomes for patients (such as nausea/vomiting and fatigue) and strong evidence (from narrative synthesis) that home palliative care services have no effect on caregiver grief when compared to usual care.
Dr Barbara Gomes, who led the study, said:
These are important findings as they show for the first time clear and reliable evidence of benefits that justify the provision of home palliative care to allow more people to die at home and to reduce patients’ symptom burden.
The real benefits, as Professor Irene J Higginson, Director of the Cicely Saunders Institute, correctly points out:
this approach could minimise unwanted and often expensive hospital admissions, reducing the burden on the NHS.and save £Billions.
The benefit goal: a home death
The goal of these studies is to provide evidence for a predetermined outcome.
It is axiomatic that someone who has been wooed and fallen for the benefit goal and has accepted care from a home palliative care team will attain the terminus at home. You really don't need a study to prove that, it is entirely self-evident; no further evidence is required.
- Health Canal
What does this mean? It means that where the focus is EoLC and to consign the patient on the Pathway, that focus will be on sufficient provision of drug interventions to eliminate symptom presentation.
The Italian pilot study on the LCP conducted by Costantini “did not improve symptoms of pain, breathlessness, or nausea and vomiting”.
The goal of these studies is to provide evidence for a predetermined outcome.
It is axiomatic that someone who has been wooed and fallen for the benefit goal and has accepted care from a home palliative care team will attain the terminus at home. You really don't need a study to prove that, it is entirely self-evident; no further evidence is required.
What does this mean? It means that where the focus is EoLC and to consign the patient on the Pathway, that focus will be on sufficient provision of drug interventions to eliminate symptom presentation.
The Italian pilot study on the LCP conducted by Costantini “did not improve symptoms of pain, breathlessness, or nausea and vomiting”.
"This poor effect for symptom control is difficult to explain," Dr. Costantini said. "It is possible that the LCP does not result in improved symptom control, but this needs further investigation. Controlling these symptoms at the end of life is complex. More research into how symptoms can be effectively controlled is required."
Arguably, then, if it does not provide ‘symptom control’, what other
purpose does the LCP serve than to provide a legal cover for the long-standing
practice of euthanasia in British hospitals...and, now, to be extended to British homes?
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