Wednesday, 22 January 2014

Liverpool Care Pathway - Trials And Rumours Of Trials

Ellershaw sees many parallels between EoLC in America and EoLC in the UK. EoLC is not in crisis; it is facing a "challenge".

The National Institute for Health Research (NIHR), a member organisation of Wee BeeLong's Leadership Alliance, is making funding available for OPTCare.

According to the Information Leafletthe OPTCare Study is to -
create and test a new palliative care service for frail older people living at home or in a care home. The OptCare study is being carried out in Sussex. It is intended to improve palliative care services for older people in the community.
The demographics of an aging population is, again, the core concern and driver. The UK’s ageing population has “considerable consequences” for public services as is discussed in UK Parliament –
The pensioner population is expected to rise despite the increase in the women’s state pension age to 65 between 2010 and 2020 and the increase for both men and women from 65 to 68 between 2024 and 2046. In 2008 there were 3.2 people of working age for every person of pensionable age. This ratio is projected to fall to 2.8 by 2033.
 This is OPTCare –
Background: People are living longer and dying increasingly with frailty and complex co-morbidities. Many suffer unnecessarily because of limited recognition of palliative care needs, aggressive management and under treatment. Palliative care is advocated for frail older people with non-malignant conditions to improve assessment and treatment, but with little evidence of effectiveness. This study intends to work with NHS staff in a community trust to develop and evaluate a new short-term integrated palliative care (SIPC) service for frail older people living at home or in a care home and their families. Short-term palliative care could be effective as it relies on existing services with additional support at times of actual or anticipated deterioration in wellbeing. Aim: To develop and evaluate the feasibility of the new SIPC service for frail older people in community settings (including care homes) delivered through integrated working between specialist palliative care services and community nursing teams, and close working with GPs and geriatricians. 
Methods: The research methods follow the Medical Research Council guidance for the development and evaluation of complex interventions. Phase 1a intervention development involves a post-bereavement survey to determine preferences for care and palliative care outcomes by place of death for older people (n=882); and phase 1b a stakeholder consultation with recipients of care and service providers/commissioners, on the survey findings to develop the intervention and then, an on-line/postal survey on the proposed components and outcomes. Phase 2 is a feasibility trial to develop procedures for a full randomised controlled trial and refine a model of integrated professional working. Phase 2 involves 52 older people randomised to receive SIPC or usual care. The primary outcome is five key palliative symptoms from the Integrated -Palliative Outcome Scale symptom component (I-POS).

1. Phase 1b: focus groups - Older adults living with frailty using one of the participating community groups or residing in the participating care home; or carers of older adults. Carers are either informal carers e.g. family member or a carer working as a volunteer for one of the participating charitable organisation supporting older people in community settings. Adults with capacity to give informed consent and communicate in English. 2. Stakeholder consultation participants comprise: service providers, commissioners and voluntary sector representatives from the study site. The purposive selection on the participants is based on: The services providers are health or social care practitioners providing community based services including: specialist palliative care, general practice, community nursing, end of life care facilitators, dementia services and social care. 3. The practitioners provide services in the locality of Sussex Community NHS Trust. 4. The commissioners are leads for end of life care services and are identified from the Care Commissioning Groups in the study site. 5. Voluntary sector representatives are local individuals representing local/national organisations supporting/advocating for older people.
Phase 2: Adults aged 75 years over residing in the study site at home or in a care home (with or without nursing) severely affected by non-malignant advanced illness and/ frailty with or without dementia and not using specialist palliative care. Severely affected encompasses one or more unresolved symptoms, psychosocial concerns, EoL issues, progressive illness, complex needs or Gold Standards Framework (GSF) prognostication index for frailty and dementia. Participants are registered with one of the four GP practices participating in the study. Participation will be offered to older people with or without carers. The inclusion criteria are broad as uncertainty surrounds when a frail older person may most benefit from palliative care. The findings from phases 1a and 1b will further develop and refine the inclusion criteria.
SIPC: SIPC - short term integrated palliative. The SIPC intervention intends to provide an extra layer of support at points of actual or anticipated unstable/ deteriorating symptom presentation and wellbeing. The SIPC service is delivered by two community palliative care teams (CPCTs) through integrated professional working with community nursing teams (n=4) and general practices (n=4), and close working with geriatricians. The intervention involves referral to of the two CPCTs, comprehensive palliati; Follow Up Length: 3 month(s); Study Entry : Single Randomisation only
They may not know, they cannot tell... 
Participation will be offered to older people with or without carers. The inclusion criteria are broad as uncertainty surrounds when a frail older person may most benefit from palliative care.
And so they trawl the net wide.

The OPTCare Study Information Leaflet continues -
The OptCare study aims to examine the care received by people in their last stages of life. We are contacting 900 people who registered the death of a relative, friend or cared for person to ask for further help. The study takes place in Brighton and Hove, and West Sussex. Its purpose is to improve care for older people and their families by developing a new service to help improve care. By analysing the views of families, friends or care home staff on the care the deceased received, researchers may be able to work out why some people received care which met their needs and preferences, while others did not. This will be used to design a new short-term service for frail older people.
Should participants in the Study in any way 'suffer negligent harm' through taking part, there is insurance in place to provide compensation.

A similar study has proceeded in America. This is in Edmonton, Alberta, Canada. This is FAMCARE, published on Springer Link –

The Family Satisfaction with End-of-Life Care (FAMCARE) has been used widely among caregivers to individuals with cancer. The aim of this study was to evaluate the psychometric properties of this measure using item response theory (IRT).
The analytic sample was comprised of caregivers to 1,983 patients with advanced cancer. Among the patients, 56 % were females, with mean age 59.9 years (s.d. = 11.8), 20 % were non-Hispanic Black. The majority were family members either living with (44 %) or not living with (35 %) the patient. Factor analyses and IRT were used to examine the dimensionality, information, and reliability of the FAMCARE.
Although a bi-factor model fit the data slightly better than did a unidimensional model, the loadings on the group factors were very low. Thus, a unidimensional model appears to provide adequate representation for the item set. The reliability estimates, calculated along the satisfaction (theta) continuum, were adequate (>0.80) for all levels of theta for which subjects had scores. Examination of the category response functions from IRT showed overlap in the lower categories with little unique information provided; moreover, the categories were not observed to be interval. Based on these analyses, a three-response category format was recommended: very satisfied, satisfied, and not satisfied. Most information was provided in the range indicative of either dissatisfaction or high satisfaction.
These analyses support the use of fewer response categories and provide item parameters that form a basis for developing shorter-form scales. Such a revision has the potential to reduce respondent burden.
Item Response Theory (IRT) attempts to account for the effects of 'guessing' a correct response to a question. Thus, in respect to a multiple response answer questionnaire where all responses are plausible, multiplying the selection of responses offered will only multiply the probability of 'guessing' a correct response that fits the experience of the respondent.

Psychometrics actually guides responses to fit pre-designed data categories which may or may not coincide with actual experience and are, in any case, open to interpretation.

When responses expressed as data are being sought to express as data, multiplying choice multiplies error. This is a simple truth because human experience is not reducible to a scale of words; it is more complex than that, but this is what a multiple response questionnaire demands!

The FAMCARE Scale goes back a long way.

This is a PubMed evaluation of FAMCARE undertaken by the Faculty of Nursing, University of Manitoba, Winnipeg, from 1993 that held promise for it to be a "psychometrically sound" tool –


The purpose of the study was to test the validity and reliability of the FAMCARE Scale which was developed to measure family satisfaction with advanced cancer care. The FAMCARE Scale was developed based upon earlier qualitative research which identified indicators of family care satisfaction and a subsequent Q-sort study that reduced those items to the most salient indicators of satisfaction according to a larger, representative sample (N = 210). A pilot test of the FAMCARE Scale using a convenience sample of 30 family members of advanced cancer patients was conducted. The scale achieved internal consistency estimates of 0.93 at two testing times, a test-retest correlation of 0.91, and estimates of criterion validity using the McCusker Scale of 0.80 and 0.77. Cluster analysis of the scale suggested 4 subdimensions. Although the scale requires further testing to establish its reliability and validity, these preliminary results indicate that the scale may be a psychometrically sound instrument useful for measurement of family satisfaction with advanced cancer care.

In 2009, the Department of Psychosocial Oncology and Palliative Care, Princess Margaret Hospital, University Health Network, published this on PubMed -


To provide confirmatory results concerning the psychometric properties of a measure of satisfaction with oncology care for use with advanced stage cancer patients, and test its sensitivity to change.
We analysed data from 315 outpatients with advanced cancer participating in a randomised controlled trial of early palliative care intervention versus routine oncology care, and their caregivers. Patients completed a 16-item measure of patient satisfaction (FAMCARE-P16), based on the FAMCARE measure of family satisfaction with cancer care, and measures assessing interactions with healthcare providers, performance status and symptom burden. Caregivers completed the original FAMCARE measure. We used confirmatory factor analysis to test the patient satisfaction measure for a single-factor structure. To determine construct validity, we assessed correlations between patient satisfaction and the other patient and caregiver measures. To assess responsiveness to change, we repeated paired t-test analyses on the 13-item and 16-item scales for 150 patients participating in a phase II trial of palliative care effectiveness, in which the FAMCARE-P was measured at baseline, 1-week and 1-month after an outpatient palliative care intervention.
A reduced 13-item version of our measure (FAMCARE-P13) possessed a one-factor structure with high reliability. Patient satisfaction was correlated in predicted directions with physical distress, communication and relationship with healthcare providers, and caregiver satisfaction. There were statistically significant increases in patient satisfaction at 1 week (p<0.0001) and 1 month (p<0.001).
We recommend the use of the FAMCARE-P13 to assess satisfaction with outpatient palliative care interventions of patients with advanced stage cancer.
This is the home of FAMCARE, the Edmonton Zone Palliative Care Program -

There are loadsa tools in store for Wee BeeLong to shop for -

They even have an EoLC Pathway that's a "work in progress"...

They even discuss your loved one bequeathing a legacy of organs and  tissue for transplant...

This is truly a programme.

This is Wee BeeLong's Leadership Alliance Engagement –

Hubris commands their confidence in their infallibility.
People, including those thought to be in their last days of life, whose condition changes, are identified in a timely way, receive good care that is reassessed at least daily (or more frequently as their condition requires), receive timely appropriate medication and have their emotional, psychological, social and spiritual needs addressed.
This is all smoke and mirrors. It's LCP with its ‘holistic’ smokescreen...
If you are thought to be likely to die within the next few days, the goal of care and treatment should be to maximise your comfort and dignity. This means paying specific attention to your physical, emotional, psychological, social and spiritual needs, as well as that of your family, and carers.
If your condition changes, you should be promptly assessed. Treatment decisions require a balance to be struck between how likely you are to benefit from the treatment, what side effects that treatment might cause and how burdensome that treatment might be, given how you are at the time. You should be involved in making these decisions unless you do not wish to, or are not able to, do so at the time. If that is the case, your doctors should act in your best interests (see glossary – Annex B), taking into account the balance described above, as well as any wish you have previously expressed and what your family and carers know would have been your wish.
But the balance, once struck, will tilt in its favour. It's still a one-way ticket to the coffin they carry you off in...

And Just-in-Case boxes -
it is important that your doctors and nurses act in your best interests and promote your comfort at all times, so if your family or carer is not around, or is not readily contactable, they should go ahead and provide you with what you need for relief of your symptoms, unless you have previously said that you do not wish to receive them. 
Additional prescriptions for medicines for symptoms that commonly occur should be pre-written to avoid delay. If you are at home, these medicines may even be ordered in advance and kept in your home so that they are readily available if and when you need them.
They have their focus fixed and will not change.

Essential reading -
Liverpool Care Pathway - The Devil Is In The Detail

Liverpool Care Pathway - There Are Always Consequences

Liverpool Care Pathway - A Cost Efficiency

Liverpool Care Pathway - Catch Up EoLC

Liverpool Care Pathway - The Morphine Ruger

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