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Rising to the challenge of palliative care for non-malignant disease

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Marie T Fallon at The University of Edinburgh
Marie T Fallon
Peter L Foley at The University of Edinburgh
Peter L Foley
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Palliative Medicine
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DOI: 10.1177/0269216312437281
2012 26: 99Palliat Med
Marie Fallon and Peter Foley
Rising to the challenge of palliative care for non-malignant disease
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PALLIATIVE
MEDICINE
Rising to the challenge of palliative
care for non-malignant disease
Palliative care for non-malignant disease has attracted much
discussion in terms of identification of patient groups, who
should deliver care and the content of that care. It has also
attracted admissions of how we fall short of appropriate
end-of-life care for patients with chronic non-malignant dis-
ease. The challenge is a significant one.
There are key areas that contribute to the current chal-
lenges in non-malignant palliative care and the following
are core.
Palliative care developed from within cancer care
facilitated by the interest and support of a small but
extremely important group of oncologists. Some of these
oncologists were among the first doctors to work fulltime
in palliative care, abandoning their oncology positions.
Initially, many services had regular input from an oncolo-
gist. The nursing component of palliative care also has a
strong oncology background, and still does in most coun-
tries. Modern palliative care would not exist in its present
state without this history, core collaborators and general
support from oncology.
Palliative care is not a neat predetermined package,
even in cancer care where advanced incurable illness can
usually be identified. Rather, it consists of components that
need to be adapted according to the individual situation. It
follows that we need to understand the components of the
individual case and, in particular, the fundamentals of the
disease process. Just as modern palliative care developed
under the umbrella of oncology, the widespread develop-
ment of non-malignant palliative care can only be achieved
by a close, meaningful collaboration with specialists in the
various non-malignant disease areas.
The strong base in cancer care has informed the cur-
rent approach to symptom control. While the evidence base
for many areas of symptom control is poor, the experience
is large. It does not follow that this extensive experience
and limited evidence base could be transferred automati-
cally to all areas of non-malignant symptom control. There
has been some important pioneering work in the area of
symptom control for non-malignant disease; however, this
is minuscule in relation to the size of the area.1 In collabora-
tion with appropriate other specialties we need to develop a
detailed understanding of the disease process, characteris-
tics of symptoms and a strategic approach to the potential
use of current strategies used for malignant disease.
Palliative care teams, particularly if hospital based,
are now seeing patients at various points in a cancer illness,
from diagnosis if symptoms are problematic, into survivor-
ship if distressing treatment-related side effects exist. A col-
laborative interdisciplinary approach early in a cancer
diagnosis, if appropriate, is now seen more frequently and
often means stepping in and out of patient care, as dictated
by the patient’s needs. This is far from proposed models for
non-malignant disease, which focus on end-of-life care.
Many problems are managed effectively if targeted earlier
in the course of an illness, rather than awaiting the end-of-
life phase. Pain and its neurobiological sequelae is an
excellent example of this. Additionally prognostication is
an ever greater challenge in non-malignant disease.
The accumulation of relevant knowledge to manage
the spectrum of palliative care problems in life-limiting non-
malignant disease is challenging. An example is neurological
disease, which represents many distinctive challenges,
although parallels can be found in other non-malignant
areas. In neurological conditions there is wide variability in
disease processes, complexity, symptoms, disease-modify-
ing options, rate of deterioration and fluctuation in condi-
tion, prognosis and complex care needs. Diseases range
from insidiously progressive congenital disorders affecting
children and young adults (such as muscular dystrophies)
to sudden-onset devastating loss of function in later life (for
instance stroke disease). In many of these diseases the dura-
tion and course of illness can be hard to predict. The fact
that some of these diseases are extremely rare also has the
potential to compound planning and prognostic difficulties.
The care required by patients with neurological disease can
likewise be complex in reflecting the multidisciplinary
needs of the patient. Many specialists (primary care, neuro-
surgery, neurology, psychiatry, care of the elderly) may be
involved, sometimes without clearly defined boundaries.
Specific medications, as well as non-pharmacological treat-
ment (non-invasive ventilation, intrathecal devices, deep
brain stimulators) may be unusual and complex even for a
specialist, and potentially daunting for clinicians who
rarely deal with them. In turn, a patient may be affected
in multiple ways by neurological disease, ranging from
effects peripherally on the muscle and nerve, to subtle
437281PMJ26210.1177/0269216312437281EditorialPalliative Medicine
2012
Editorial
at Edinburgh University on July 9, 2013pmj.sagepub.comDownloaded from
100 Palliative Medicine 26(2)
higher cognitive and perceptual difficulties. In particular,
cognitive and processing problems (commonly associated
with a huge range of neurological illnesses) may impact on
communication and capacity, even at an early stage in the
disease, despite sometimes not becoming clinically more
apparent until the later stages of disease.
Moving from the challenges, what is
currently advised and is happening?
At present the view is that access to palliative care should
be based on need rather than diagnosis, and on that basis
many patients with non-malignant disease qualify. The
potential requirement for palliative care in non-malignant
illnesses is reflected in UK National Service Frameworks
(NSFs).2,3 Palliative care is specified as a ‘Quality
Requirement’. In relation to neurological disease:
People in the later stages of long-term neurological conditions
are to receive a comprehensive range of palliative care
services when they need them to control symptoms, offer pain
relief, and meet their needs for personal, social, psychological
and spiritual support, in line with the principles of palliative
care.
The obvious question is when this is applied to all patients
with non-malignant life-limiting illness, how can it be
achieved and, realistically, can it be achieved?
Effective communication about palliative care issues
both between and within specialties should increase. We
need to understand colleagues’ beliefs and expectations and
accept that an improved knowledge base has to evolve. We
need to believe in interdisciplinary integration and be pro-
active in its facilitation.
The evolution of palliative medicine as a subspecialty
of medicine, with its recognised training programme and
now its own exit exam, has certainly been important in
UK culture, while parallel developments in other coun-
tries have also been of great importance. Imaginative
involvement of trainees in palliative medicine and in the
core non-malignant areas, in reciprocal clinical place-
ments, and in research has to evolve more. This will
increase cross-fertilisation and is an obvious mechanism
to be exploited. Joint supervision, especially of research,
between palliative care and the relevant non-malignant
disease specialty is important. Similar methods could be
used with senior nursing staff for clinical attachments and
for those considering research topics.
There are logistics, not least identifying key profes-
sionals in the various specialties to partner palliative care
clinicians, who are enthusiastic but also have the poten-
tial to develop clinical and/or research collaborations. In
addition, this needs to be co-ordinated across large net-
works of palliative care for non-malignant disease so that
information is shared, and work is developed in a mean-
ingful and complementary fashion. Underpinning this,
agreement on a system and common language for describ-
ing a wide range of problems and interventions is funda-
mental. Without a language that facilitates the sharing
and transfer of results, then areas of excellent develop-
ment will remain in silos.
Consideration of a qualification for time spent by non-
palliative care trainees in palliative care should be consid-
ered as rarely, if at all, would joint accreditation be achieved.
We need to be open and positive in our encouragement of
others, as our specialty is of relevance to everyone and it is
clear that we cannot meet the needs of all patients who
require palliative care. This should be discussed with the
core non-malignant relevant specialties to explore potential
reciprocal acknowledgement for trainees who might wish
to spend time in one of these areas. In other words, if it is
important then we should not just facilitate it, but also
badge it.
There has been some landmark work developed to
bring specialties together.4,5 In the UK Marie Curie Cancer
Care has been pioneering innovative work with the British
Heart Foundation. A wider network to facilitate relevant
cross-talk and developments in a systematic manner
would be very positive. We can build on the guidelines
already available and ask ourselves how we can make
them more focused.
The balance between a pragmatic symptoms- and needs-
based approach, predicated upon identifying common
ground between patients and between specialties, needs to
be balanced, or combined, with a subspecialised approach
recognising the varying needs of differing groups of
patients with life-limiting, non-malignant disease.
References
1. Oxberry SG, Torgenson, DT, Bland M, et al. Short-term opioids
for breathlessness in stable chronic heart failure: a randomised
controlled trial. Eur J Heart Fail 2011; 13: 1006–1012.
2. National End of Life Care Programme. End of life care in long term
neurological conditions: a framework for implementation, 2010.
3. National End of Life Care Programme. End of life care in
heart failure: a framework for implementation, 2010.
4. Gadoud AC and Johnson MJ. Palliative care in non-malignant
disease. Medicine 2011; 39: 664–667.
5. Gadoud A and Johnson MJ. Models of care for advanced
heart failure patients requiring palliative care – an integrated
approach. Oncol Palliat Care 2010; 4: 30–31.
Marie Fallon
St Columba’s Hospice Chair of Palliative Medicine at the University of
Edinburgh, UK
Peter Foley
Joint Research Fellow in Neurology/Palliative Medicine, University of
Edinburgh, UK
Corresponding author:
Professor Marie Fallon, St Columba’s Hospice Chair of Palliative
Medicine at the University of Edinburgh, UK.
Email: marie.fallon@ed.ac.uk
at Edinburgh University on July 9, 2013pmj.sagepub.comDownloaded from
... Notuð var fraeðileg samantekt með kögunarsniði (e. scoping review) (Polit og Beck, 2021;Tricco o.fl., 2018 Þrátt fyrir að gerð sé krafa um að allir heilbrigðisstarfsmenn geti veitt almenna líknarmeðferð eru vísbendingar um að mörgum hjúkrunarfraeðingum finnist þá skorta þekkingu og kunnáttu í að veita ásaettanlega meðferð við lok lífs (Alshammari o.fl., 2022;Fallon og Foley, 2012;Lind o.fl., 2022). Einnig eiga margir erfitt með að átta sig á því hvenaer andlát er yfirvofandi (Bloomer o.fl., 2013) og margir hjúkrunarfraeðingar eru óöruggir í einkennameðferð (Kurnia o.fl., 2020). ...
... Eins þarf að huga að ástvinum sjúklinga og sinna þannig fjölbreyttri fjölskylduhjúkrun samhliða hjúkrun hins deyjandi. Í rannsóknum víða um heim hafa hjúkrunarfraeðingar lýst skorti á þekkingu og reynslu í tengslum við umönnun og meðferðar deyjandi og jafnvel hraeðslu við að sinna meðferð við lok lífs (Bloomer o.fl., 2013;Fallon og Foley, 2012;Lind o.fl., 2022). Heilbrigðisráðuneytið hefur látið vinna og birt tvaer skýrslur um þörfina á líknar-og lífslokameðferð á Íslandi. ...
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Leitast er við að svara rannsóknarspurningunni: Hvaða þaettir geta reynst styðjandi eða hindrandi við að veita góða meðferð við lok lífs á deildum sem eru ekki sérhaefðar líknardeildir? Á sérhaefðum líknardeildum starfar heilbrigðisstarfsfólk með reynslu og sérmenntun á sviði líknarmeðferðar og oft eru þaer betur mannaðar en almennar deildir. Þar fá sjúklingar með erfið einkenni og flókin vandamál sérhaefða líknarmeðferð. Umönnun og meðferð við lok lífs er ekki eingöngu veitt á sérhaefðum líknardeildum heldur einnig utan þeirra, stundum við aðstaeður sem eru ekki ákjósanlegar og af starfsmönnum sem telja sig skorta haefni í líknar-og lífslokameðferð. Notuð var fraeðileg samantekt með kögunarsniði. Fylgt var leið-beiningum Joanna Briggs-stofnunarinnar, fimm þrepa kögunar-sniðsramma Arksey og O'Malley og PRISMA-ScR. Leitað var í gagna-söfnunum PubMed og Cinahl og takmarkaðist leit við heimildir útgefnar 2011-2022. Leitarorðin general ward, hospital ward, medical ward, medicine ward, palliative care, terminal care, end of life care, nurses, nursing og nurse voru notuð. Leit skilaði 367 heimildum og að loknu mati uppfylltu 11 rannsóknir inntökuskilyrðin. Niðurstöður voru settar fram sem fimm þemu sem einkenna lífslokameðferð og lýsa þáttum sem geta ýmist stutt eða hindrað góða meðferð við lok lífs á deildum utan sérhaefðra líknardeilda: 1) haefni og þekking starfsfólks, 2) mönnun, 3) umhverfi, 4) samskipti og samtal um lífslokameðferð og 5) sameiginleg sýn á lífslokameðferð. Styðjandi þaettir voru haefni í lífslokameðferð, naegileg mönnun, styðjandi umhverfi, meðferðaráaetlun og klínískar leiðbeiningar og góð samskipti. Hindrandi þaettir voru skortur á haefni í lífslokameðferð, of margir sjúklingar, skortur á einbýlum, skortur á klínískum leiðbeiningum og þverfaglegu samstarfi og að samtalið um yfirvofandi lífslok var tekið of seint. Með þjálfun og kennslu, aðstaeðum og umhverfi, má efla gaeði umönnunar við lok lífs á deildum utan sérhaefðra líknardeilda. Frekari rannsóknir skortir á viðfangsefninu, ekki síst á því hvað styður farsaela innleiðingu lífslokameðferðar á ósérhaefðum deildum. Tilgangur Bakgrunnur ÚTDRÁTTUR Aðferð Niðurstöður Lykilorð: Fraeðileg samantekt með kögunarsniði, hindrandi þaettir, hjúkrun, haefni, legudeild, lífslokameðferð, líknardeild, styðjandi þaettir Ályktun HAGNÝTING RANNSÓKNARNIÐURSTAÐNA "Hvers vegna aettir þú að lesa þessa grein?" Nýjungar: Samantektin varpar ljósi á hvað styður og hvað hindrar góða meðferð við lok lífs á deildum sem eru ekki sérhaefðar líknardeildir. Hagnýting: Niðurstöður geta nýst til að setja fram gagnreynda áaetlun um áhrifaríka leið til að styðja við lífslokameðferð á deildum utan sérhaefðra líknardeilda, hvort sem það er með aukinni fraeðslu og þjálfun fyrir hjúkrunarfraeðinga, baettu starfsumhverfi eða opnari umraeðu um lífslokameðferð. Þekking: Niðurstöður eru innlegg í fraeði stjórnunar í hjúkrun þar sem haegt er að nýta þaer til að efla og styðja við lífslokameðferð veitta á deildum utan sérhaefðra líknardeilda. Áhrif á störf hjúkrunarfraeðinga: Niðurstöður fela í sér mikilvaeg skilaboð til klínískra hjúkrunarfraeðinga, stjórnenda í hjúkrun og ráðamanna í heilbrigðisþjónustu, auk kennara og fraeðimanna, varðandi það hvernig haegt er að styðja við góða meðferð við lok lífs á deildum sem eru ekki sérhaefðar líknardeildir. Meðferð við lok lífs utan sérhaefðra líknardeilda: Fraeðileg samantekt með kögunarsniði Ritrýnd grein | Peer review
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... The image of palliative use of morphine being 'just for cancer' is commonly perceived in many countries [21,27]. Foley and Fallon [28] speculate that it stems from the fact that the early palliative care movement was conceived by oncologists. In some countries, such as the UK, a framework has been developed to facilitate the provision of palliative care based on need, rather than diagnosis [28]. ...
... Foley and Fallon [28] speculate that it stems from the fact that the early palliative care movement was conceived by oncologists. In some countries, such as the UK, a framework has been developed to facilitate the provision of palliative care based on need, rather than diagnosis [28]. Further research into the impact of such an approach is needed, if morphine for palliative care is to become more widely utilized for noncancer disease in countries such as Zambia. ...
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... 17 While any end-of-life diagnosis has some inherent uncertainty until death, this uncertainty is particularly great in people who experience a gradual age-related decline in health over the last few months of life. 9,18,19 So it is unsurprising that such people are more likely to die without an end-of-life diagnosis than, for instance, people with cancer. 14 This study sought to establish how much this difference matters. ...
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... 2 This picture is now changing; the progressive and terminal nature of motor neurone disease, the need for anticipatory planning and regular re-evaluation of symptoms and the central role of carers are being seen as highly relevant to the specialism of palliative care. 2 With this comes recognition that palliative care should be initiated early in the disease trajectory, rather than waiting until near the end of life, with the involvement of palliative care specialists to help with advance care planning and symptom control. [3][4][5] Given the potential for rapid disease progression and deterioration associated with motor neurone disease, it is essential to have a clear understanding of individuals' experiences of palliative care alongside the potential needs and priorities for such care across the disease trajectory. Existing research in this area includes an exploration of people's experiences of living with motor neurone disease through a systematic review of qualitative research. ...
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... In addition, the development of patient-centered models of PC may require collaboration with specialists in those clinical disciplines, who are familiar with idiosyncratic disease pro- cesses, symptoms, and treatments. 5,13 Finally, given that none of the included HF PC interventions assessed caregiver outcomes, future trials should seek to establish the efficacy of PC in alleviating HF caregiver suffering. ...
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... Palliative care (PC) evolved from taking care of terminal cancer patients to modern concept of early integration into disease trajectories of patients with life limiting cancer and non-cancer diseases (1). However, PC for patients with moderate to severe developmental intellectual disabilities (ID) was seldom discussed in literature (2). ...
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Article
  • Nov 2019
Objective The purpose was to describe the physical, psychological, social, and spiritual needs of patients with non-cancer serious illness diagnoses compared to those of patients with cancer. Method We conducted a retrospective chart review of all patients with a non-cancer diagnosis admitted to a tertiary palliative care unit between January 2008 and December 2017 and compared their needs to those of a matched cohort of patients with cancer diagnoses. The prevalence of needs within the following four main concerns was recorded and the data analyzed using descriptive statistics and content analysis: • Physical: pain, dyspnea, fatigue, anorexia, edema, and delirium • Psychological: depression, anxiety, prognosis, and dignity • Social: caregiver burden, isolation, and financial • Spiritual: spiritual distress Results The prevalence of the four main concerns was similar among patients with non-cancer and cancer diagnoses. Pain, nausea/vomiting, fatigue, and anorexia were more prevalent among patients with cancer. Dyspnea was more commonly the primary concern in patients with non-cancer diagnoses (39%), who also had a higher prevalence of anxiety and concerns about dignity. Spirituality was addressed more often in patients with cancer. Significance of results The majority of patients admitted to tertiary palliative care settings have historically been those with cancer. The tertiary palliative care needs of patients with non-cancer diagnoses have not been well described, despite the increasing prevalence of this population. Our description of the palliative care needs of patients with non-cancer diagnoses will help guide future palliative care for the increasing population of patients with non-cancer serious illness diagnoses.
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Palliative care in non-malignant disease
Article
Full-text available
  • Nov 2011
  • Med UK Ed
A lack of access to specialist palliative care (SPC) has led to a lack of clinicians’ skills, knowledge and attitudes pertinent to the management of patients with chronic conditions such as end-stage heart failure, chronic obstructive pulmonary disease (COPD) and renal failure. Recognition of the ‘end-stage’ remains a key challenge. This article discusses how a palliative care approach can be incorporated into standard active treatment, outlines the management of important symptoms and discusses the importance of advance care planning. The particular problems experienced by patients with chronic neurodegenerative disease are discussed, and swallowing and respiratory difficulties are explored in the context of potential loss of mental capacity and ability to communicate. The importance of excellent communication skills is highlighted in particular regard to advance planning for end-of-life issues.
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Living and dying with severe chronic obstructive pulmonary disease: Multi-perspective longitudinal qualitative study
Article
Full-text available
  • Jan 2011
  • Br Med J
To understand the perspectives of people with severe chronic obstructive pulmonary disease (COPD) as their illness progresses, and of their informal and professional carers, to inform provision of care for people living and dying with COPD. Up to four serial qualitative interviews were conducted with each patient and nominated carer over 18 months. Interviews were transcribed and analysed both thematically and as narratives. 21 patients, and 13 informal carers (a family member, friend, or neighbour) and 18 professional carers (a key health or social care professional) nominated by the patients. Primary and secondary care in Lothian, Tayside, and Forth Valley, Scotland, during 2007-9. Eleven patients died during the study period. Our final dataset comprised 92 interviews (23 conducted with patient and informal carer together). Severe symptoms that caused major disruption to normal life were described, often in terms implying acceptance of the situation as a "way of life" rather than an "illness." Patients and their informal carers adapted to and accepted the debilitating symptoms of a lifelong condition. Professional carers' familiarity with the patients' condition, typically over many years, and prognostic uncertainty contributed to the difficulty of recognising and actively managing end stage disease. Overall, patients told a "chaos narrative" of their illness that was indistinguishable from their life story, with no clear beginning and an unanticipated end described in terms comparable with attitudes to death in a normal elderly population. Our findings challenge current assumptions underpinning provision of end of life care for people with COPD. The policy focus on identifying a time point for transition to palliative care has little resonance for people with COPD or their clinicians and is counter productive if it distracts from early phased introduction of supportive care. Careful assessment of possible supportive and palliative care needs should be triggered at key disease milestones along a lifetime journey with COPD, in particular after hospital admission for an exacerbation.
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Coping With Death and Dying on a Neurology Inpatient Service Death Rounds as an Educational Initiative for Residents
Article
  • Nov 2011
Residents in neurology may feel unprepared to care for dying patients. We developed Death Rounds to provide emotional support and end-of-life care teaching for residents caring for dying patients on the inpatient neurology service. Death Rounds are monthly 1-hour clinical case discussions where residents identify issues through shared experiences. To survey neurology residents' perceptions of Death Rounds with respect to end-of-life care teaching and emotional support. Design, Setting, and We conducted an electronic survey of all (n = 26) neurology residents and recent residency graduates at the University of Washington 2 years after instituting monthly Death Rounds. Main Outcome Measure The survey consisted of 10 questions examining residents' perceptions of the extent to which Death Rounds provided emotional support and end-of-life care teaching. We dichotomized responses to statements about Death Rounds as agree or disagree. All 26 residents responded to the survey and attended at least 1 Death Rounds session. More than half of residents attended more than 3 sessions. Residents agreed that Death Rounds helped them cope with dying patients (17 residents [65%]), delivered closure for the team (16 residents [61%]), and provided emotional support, more for the team (18 residents [69%]) than the individual (10 residents [38%]). Most residents felt that Death Rounds provided useful teaching about end-of-life care (18 residents [69%]), and they were satisfied overall with Death Rounds (16 residents [61%]). Death Rounds afford an opportunity for physicians-in-training to process as a group their feelings, intense emotions, and insecurities while learning from the dying process. In our inpatient neurology service, most residents found it a rewarding and valuable experience.
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Dealing with the unexpected
Article
  • Oct 2011
  • Practical Neurol
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Short-term opioids for breathlessness in stable chronic heart failure: A randomized controlled trial
Article
  • Jun 2011
  • EUR J HEART FAIL
To assess the effect of oral opioids vs. placebo on breathlessness in patients with chronic heart failure (CHF). Oral morphine (Oramorph), oral oxycodone (Oxynorm), and placebo were studied in an outpatient setting. Once randomized, participants received all three interventions in a controlled double-blind crossover trial for 4 days each, with a 3-day washout between interventions. Patients known to the Hull and East Yorkshire Academic Cardiology department with CHF (New York Heart Association Grade III-IV) were invited to participate. Participants were eligible if they were on standard medical therapy with angiotensin-converting enzyme inhibitors/angiotensin receptor blockers, and diuretics. Participant-rated change in 11-point numerical rating scale (NRS) (average over previous 24 h) breathlessness severity score from baseline (Day 1) to Day 4 of treatment was the primary outcome measure. The study was powered to detect a one-point change in severity.Thirty-nine patients were randomized and 35 completed all three study arms. Breathlessness severity was reduced from baseline with all three interventions. There was no statistically significant difference between active intervention and placebo or between the two types of opioid for the primary endpoint [-1.37 in NRS score for placebo group vs. -0.41 in morphine group (P = 0.13) and -1.29 for oxycodone group (P = 0.90)]. The response to treatment was not affected by aetiology, severity of CHF, or concurrent drug therapy. Opioid administration did not cause detrimental changes in clinical observations and was well tolerated. We demonstrated no benefit over placebo for the relief of breathlessness with short-term low-dose oral opioids for CHF patients. Trial registered prior to the recruitment of the first participant with Current Controlled Trials (www.controlled-trials.com; Trial number ISRCTN 85268059).
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Pharmacological management of symptoms in multiple sclerosis: Current approaches and future directions
Article
  • Dec 2010
Management of symptoms in multiple sclerosis (MS) has received little attention compared with disease-modifying treatments. However, the effect of these symptoms on quality of life can be profound. Clinical trials of pharmacological drugs to treat symptoms of MS have often been underpowered and have used inappropriate measures of outcome. Many currently used symptomatic drugs were introduced decades ago, when study quality was considerably below current standards. Therefore, the evidence base on which to make clinical decisions is less than adequate. Interest in pharmacological treatment of symptoms in MS has increased in recent years, and several large randomised controlled trials have been reported. Pharmacological strategies are a core component of the treatment of these symptoms, but it is imperative to remember that a multidisciplinary rehabilitation approach is needed for effective management.
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Some difficult decisions in ALS/MND
Article
  • Aug 2010
  • AMYOTROPH LATERAL SC
The physical and emotional damage caused by ALS creates ripples that reach a wide group of individuals beyond the patient. Decisions about care and end of life are never straightforward; solutions are always bespoke and must involve the wider multidisciplinary team. There is a need for awareness of how these discussions will be affected by personal attitudes, experience, culture and issues in our own professional and personal lives. The aim should be to respond to patient and family and be honest, sensitive, empathic, understandable and direct, with a constant balance of hope with realism. Finally, as professionals we have our own need for support and to be aware of our own feelings to prevent the very real threat of compassion fatigue (20). A strong multidisciplinary team is greater than the sum of its parts, and can provide robust internal support to its members, using their pooled expertise to serve patients and their families more effectively as a result.
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Palliative care for people severely affected by multiple sclerosis: Evaluation of a novel palliative care service
Article
  • Mar 2010
  • MULT SCLER
Multiple sclerosis results in both physical and psychological disability but some patients have needs that are not adequately met by existing services. Our objective was to explore whether a new palliative care service improved outcomes for people severely affected by multiple sclerosis. A delayed intervention randomized controlled trial was undertaken with multiple sclerosis patients deemed by staff to have palliative care needs. The intervention was a multiprofessional palliative care team assessment and follow-up. The intervention group was offered the team immediately (fast track, FI); the control group continued best standard care and then offered the team after 3 months (standard intervention, SI). The main outcome measures were: patient reported issues using the Palliative Care Outcome Scale and Multiple Sclerosis Impact Scale at 12 weeks and caregiver burden using the Zarit Burden Inventory. Sixty-nine people were referred to the service; 52 consented or were eligible to be randomized (26 to the FI and 26 to the SI groups). At 12 weeks people in the FI group had an improvement (mean change -1.0) in the total score of 5 key symptoms whereas there was deterioration in the SI group (mean change 1.1, F = 4.75, p = 0.035). There was no difference in the change in general Palliative Care Outcome Scale or Multiple Sclerosis Impact Scale scores. There was an improvement in caregiver burden in the FI group and a deterioration in the SI group (F = 7.60, p = 0.013). Involvement with the palliative care service appeared to positively affect some key symptoms and reduced informal caregiver burden.
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