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Current social trends and challenges for the dying personKellehear, Allan January 2017 (has links)
Buried deep inside the debates on how we should die - with or without palliative care or euthanasia -and where we should die - in hospitals, nursing homes, hospices or in our own homes—lie two strange and persistent facts. Few people understand the dominant ways we die and the challenges most people face because of those types of dying. Many of the social science monographs and health policy debates focus on cancer dying or dying in total institutions. Yet cancer is only one disease that kills, and many people live out their dying with several fatal illnesses. Though many people become dead in total institutions, the longer part of living-while-dying is outside of custodial care. Between a popular media fed with mere clinical insights about dying and a social science tradition of investigations that have taken almost their every lead from health care institutions, major myths and biases do grow. And basic insights from history, cultural sociology and epidemiology continue to be overlooked.
This chapter seeks to redress these oversights by describing the key social trends, and the personal challenges thrown up by them, for today’s dying populations. Any basic sociology of dying needs to grapple with these trends because they are the meeting places between recent history and identity for today’s dying person. I describe seven major social trends that are key determinants of the cur- rent social experience of dying. These are: (1) the complicated nature of dying trajectories; (2) the seduction of medical rescue as a broad cultural value; (3) the myth of institutionalization; (4) the social manufacture of horror for con- temporary images of dying; (5) the rise of single-person households; (6) the paradoxical trend towards promoting dying for resource-poor countries while promoting sudden death in resource-wealthy ones; (7) and the current inability to address the problem of destination for a fundamental life-course rite of passage such as death and dying.
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Opioid prescribing for cancer patients in the last year of life: a longitudinal population cohort studyZiegler, Lucy, Mulvey, M., Blenkinsopp, Alison, Petty, Duncan R., Bennett, M.I. January 2016 (has links)
Yes / We linked UK cancer registry data with the corresponding electronic primary care medical records of 6080 patients who died of cancer over a 7-year period in a large United Kingdom city. We extracted all prescriptions for analgesics issued to each patient in the linked cohort during the 12 months before death and analysed the extent and duration of strong opioid treatment with clinical and patient characteristics. Strong opioids were prescribed for 48% of patients in the last year of life. Median interval between first prescription of a strong opioid and death was 9 weeks (interquartile range 3-23). Strong opioid prescribing was not influenced by cancer type, duration of illness, or gender but was adversely influenced by older age. Compared with patients who died in a hospice, those who died in a hospital were 60% less likely to receive a strong opioid in primary care before admission (relative risk ratio 0.4, CI 0.3-0.5, P < 0.01). The study provides the first detailed analysis of the relatively late onset and short duration of strong opioid treatment in patients with cancer before death in a representative UK cohort. This pattern of prescribing does not match epidemiological data which point to earlier onset of pain. Although persistent undertreatment of cancer pain is well documented, this study suggests that strategies for earlier pain assessment and initiation of strong opioid treatment in community-based patients with cancer could help to improve pain outcomes. / National Institute for Health Research (NIHR) (RP-PG-0610-10114)
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Att uppleva hälsa vid livets slut : En litteraturstudieHansson, Linn, Lorensson, Lena January 2016 (has links)
I mötet med patienter i livets slut övergår sjuksköterskans handlingar från botande till lindrande. Bakgrunden beskriver begreppet hälsa som ett flerdefinierbart begrepp och sjuksköterskans roll i vården. Den palliativa vårdens förhållningssätt och de sex S:en beskriver att sjuksköterskan ska utgå från patientens livsvärld för att få kunskap om hur livskvalité och hälsa kan främjas i livets slut. I problemformuleringen beskrivs vikten av att se patienters behov och önskningar, det är deras berättelser som bör ligga till grund för sjuksköterskans agerande. Syftet var att belysa vad patienter upplever som hälsobefrämjande omvårdnad vid livets slut. Metoden som använts är litteraturstudie och resultatet är funnet i åtta vårdvetenskapliga artiklar. Resultatet redovisades i tre teman som uppfattades som viktiga för att uppleva välbefinnande och hälsa i livets slut. Hälsofrämjande relationer beskriver närståendes betydelse och sjuksköterskans förmåga att ha både en professionell och personlig roll. Möjliggöra delaktighet, genom god kommunikation och att patienten har kontroll skapas delaktighet i vården. Möjliggöra ett gott liv, genom symtomkontroll och att bevara det vanliga, främjas en känsla av värdighet för patienter i livets slut. Betydelsen av sjuksköterskans roller framkom i diskussionen, vikten av att vara både personlig och professionell. Medvetenhet krävs hos sjuksköterskan för att se patientens verkliga behov. Det visade sig att närstående inte enbart var något positivt för patienterna, de känner ett ansvar för sina närståendes välmående och det kan innebära ytterligare en påfrestning för den som är sjuk.
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What influences referrals in community palliative care services? : a case studyWalshe, Catherine January 2006 (has links)
Equity of access to healthcare services is a concept which underpins current UK health policy. However evidence suggests that this is not achieved within community palliative care. Referrals can be tardy or not made at all. Most literature describes inequality in service utilisation, but does not aid understanding of why such inequalities exist. There is little research exploring the processes underpinning referral making rather than the outcomes of referrals such as service utilisation. The aim of this research was to investigate the influences on referral decisions made within community palliative care services. A qualitative case study strategy was chosen as the research approach as it provided a framework for facilitating the incorporation of multiple perspectives in a complex context, in a field where there has been little previous research, and where there is little theory to guide the investigation. Three cases (Primary Care Trusts) were studied. Data collection used multiple methods (interviews, observation and documentary analysis, as well as mapping and profiling the palliative care services provided within the cases) from multiple perspectives (general and specialist palliative care professionals, managers, commissioners and patients). Detailed data analysis followed a framework approach, comparing and contrasting patterns within and across cases with existing and developing theoretical propositions. Two core influences on the way health care professionals made referral decisions were found. First, their perception of their own role in providing palliative care. Autonomous professionals made independent judgements about referrals, influenced by their expertise, workload, the special nature of palliative care and the relationship they developed with patients. Second, their perception about those to whom they may refer. Professionals needed to know about services to refer, and then made a complex judgement about the professionals involved and what they could offer the referrer as well as the patient. These findings indicate that many more factors than an assessment of patients' clinical need affect referrals within community palliative care services. It appears that personal, inter-personal and inter-professional factors have the potential to shape referral practices. It may be that the combination of these factors has an influence on equitable access to community palliative care services. Practitioners could be more explicit about referral or non-referral rationales, and policy makers take account of these complex influences on referrals rather than just mandating change.
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Examining clinical supervison with palliative care nursesDixon, Elizabeth May January 2009 (has links)
This study focuses on the current issues regarding the provision of clinical supervision for palliative care nurses. NICE (2004) recommendations stated that the task of supervision should be undertaken by „Level 4‟ practitioners such as clinical psychologists or psychiatrists. Palliative care nurses are recognised to experience high levels of stress due to the emotionality of their role. However there appears to be little understanding of how they cope with this aspect of their role. Self care is promoted as a useful strategy; however this is thought to have limitations due to the questionable ability for an individual to objectively and accurately assess their own mental and emotional state. Clinical supervision has been attempted with palliative care nurses but this appears to focus on the internal world of the nurse rather than the interaction between nurse and patient. This study employed a staff survey, including a demographic questionnaire, the Copenhagen Burnout Inventory and the General Health Questionnaire, followed by individual interviews and focus groups analysed using thematic content analysis. Participants were recruited from two teams within one cancer network. Results showed that there was an incidence of both high stress and psychiatric morbidity within the sample. Provision of clinical supervision was shown to be inconsistent across the two teams. Although there was recognition that clinical supervision would be beneficial, there was a certain amount of confusion regarding the concept as well as suspicion about the „real‟ agenda. These factors appeared to work together to produce a situation in which clinical supervision was not being provided or accepted in a way that would maximise its efficacy as its application was inconsistent with the theoretical basis. In conclusion, in order to better support palliative care nurses with the difficult aspects of their role, it was suggested that a more structured and consistent picture of clinical supervision was provided. This would enhance their practice, support their emotional needs and protect the patients under their care.
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The Development of a New Model for Assessing African-American Spirituality in Palliative CareWelch, John C. 04 May 2017 (has links)
Research has shown that African-Americans are least likely to receive adequate palliative interventions leading to concerns about the quality of health care in general and palliative care in particular for this population. Acknowledging patient preferences are essential in administering quality health care especially when a patient's condition is terminal. But when African-Americans are least likely to complete living wills or durable power of attorneys for health care and more likely to continue to request life sustaining treatments when near death, conflicts between patients and medical professionals can result.<br>
Recognizing patient spirituality and addressing their spiritual needs can help the patient, family or surrogate decision-maker come to terms with, if not make sense of, their life-threatening illness and eventual mortality. This may be especially salient for African-Americans because of their history of victimization of racial discrimination and ensuing overwhelming challenges with sometimes tragic consequences. Models and approaches used to assess the spirituality of African-American patients must be culturally appropriate and performed by professionals with interpersonal communications skills and an awareness of how their implicit bias can impede the integrity of the clinician-patient interaction. / McAnulty College and Graduate School of Liberal Arts; / Health Care Ethics / PhD; / Dissertation;
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The profile of chronic pain patients attending the Helen Joseph Hospital Pain Management UnitMayat, Yasmin Mohamed Saleem January 2014 (has links)
A
research
report
submitted
to
the
Faculty
of
Health
Sciences,
University
of
the
Witwatersrand,
in
partial
fulfillment
of
the
requirements
for
the
degree
of
Master
of
Science
in
Medicine
in
the
branch
of
Anaesthesiology
Johannesburg,
2014 / BACKGROUND:
Chronic
pain
is
a
biopsychosocial
phenomenon
that
can
have
a
profound
impact
on
people’s
lives.
Internationally,
chronic
pain
is
being
recognised
as
a
health
priority.
South
Africa
is
a
developing
country
with
limited
resources
that
are
directed
at
catering
for
a
growing
population
where
life
threatening
conditions
like
Human
Immunodeficiency
Virus
(HIV)/Acquired
Immunodeficiency
Syndrome
(AIDS),
violent
crimes,
and
poverty
predominate.
Auditing
the
Helen
Joseph
Hospital
Pain
Management
Unit
(HJHPMU)
is
a
step
towards
addressing
the
paucity
of
epidemiological
data
on
chronic
pain
in
South
Africa.
Clinical
records
are
a
basic
clinical
tool
that
also
serves
as
a
medicolegal
document.
It
is
essential
that
these
records
are
legible
and
complete.
AIM:
The
aim
of
this
study
was
to
describe
the
profile
of
chronic
pain
patients
at
the
HJHPMU
for
2011
and
to
determine
the
adequacy
of
record
keeping.
METHODOLOGY:
A
retrospective,
contextual,
descriptive
study
design
was
utilised.
A
consecutive
sampling
method
was
used
and
the
study
sample
included
the
HJHPMU
database
and
all
files
of
adult
patients
that
attended
the
HJHPMU
during
the
period
January
2011
to
December
2011.
Patient
files
were
excluded
from
the
audit
if
insufficient
data
were
found.
Descriptive
statistics
were
used
to
analyse
the
data
obtained
during
the
study.
Frequencies
and
percentages
have
been
reported.
A
Chi-‐squared
test
was
utilised
to
analyse
any
association
between
gender
and
type
of
pain.
RESULTS:
There
were
475
patients
in
the
HJHPMU
database
for
the
year
2011
and
190
of
these
patients
were
excluded
from
the
study
due
to
illegible
handwriting,
duplication
in
the
HJHPMU
database,
missing
data
such
as
no
hospital
number
recorded,
no
initials
to
a
surname,
or
the
file
not
found.
This
resulted
in
a
study
sample
of
285
patients.
The
HJHPMU
had
215
(75,44%)
pre-‐existing
patients
and
70
(24,56%)
new
patients
during
the
year
2011.
The
preponderance
of
patients
were
in
the
41-‐60
year
age
group,
with
146
(51,23%)
patients
presenting
in
this
age
group.
Of
the
285
patients
in
the
study,
91
(31,93%)
patients
were
male
and
194
(68,07%)
were
female.
The
most
common
complaint
was
of
lower
back
pain
(LBP).
There
were
97
(34,04%)
patients
with
a
diagnosis
of
spinal
pain
and
59
(20,70%)
with
Failed
Back
Surgery
Syndrome
(FBSS).
There
were
164
patients
with
a
relevant
surgical
history.
This
included
46
(28,05%)
patients
that
had
been
involved
in
a
traumatic
event,
47
(16,49%)
patients
that
had
surgery
other
than
spinal
surgery
that
was
relevant
to
their
pain
diagnosis,
and
71
patients
(43,29%)
that
4
had
spinal
surgery
that
was
relevant
to
their
diagnosis.
A
Chi-‐squared
test
was
performed
on
the
relationship
between
gender
and
the
type
of
pain,
and
a
p
value
of
0.001
was
found.
When
relating
the
type
of
pain
with
age,
mixed
pain
and
nociceptive
pain
was
found
to
be
most
common
in
those
aged
>60
years
(n=26),
whereas
neuropathic
pain
was
found
to
be
most
common
in
the
41-‐60
year
age
group
(n=43).
CONCLUSION:
With
the
limited
data
from
this
study,
the
profile
of
patients
with
chronic
pain
in
South
Africa
seems
to
not
differ
grossly
from
data
collected
internationally.
The
most
pertinent
finding
of
this
study
is
the
inadequacy
of
record
keeping.
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The carer's initiation : a qualitative study of the experience of family care of the dyingNewbury, Margaret J. January 2009 (has links)
The aim of this study was to explore the experience of carers of family members dying at home with particular reference to their expectations and preparedness for the dying process. It was a qualitative, longitudinal study which initially followed a grounded theory approach. However, as a theatrical metaphor became apparent from the data the approach changed to dramaturgical analysis. Face to face semi-structured interviews were conducted with fifteen carers before and after the death of their family member. Carers were found to be performing a leading role in home palliative care but they experienced a universal sense of uncertainty and of being unrehearsed for their role in the dying process. They were reluctant to seek information to give them a script for their performance because it was painful and difficult to contemplate their family member dying. They needed the direction of health professionals and the support of paid carers but had variable experiences of these services. Carers’ performance types were also variable but tended to be towards the combative or the pragmatic end of a continuum. Their experience was illuminated through the dramaturgical metaphor of a play called the Carer’s Initiation. The climax of the play was the death of the family member followed by the finale in which they watch over the body until it is removed and they finally face a future without their family member. The carer’s initiation highlighted policy and practice implications for improving the preparation and support of carers for the dying process.
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Searching for new hope : a grounded theory of the experience of hope for older women who are bereaved palliative caregiversHoltslander, Lorraine 31 October 2007
Purpose/Objectives: To explore the experience and processes of hope for older women who are bereaved palliative caregivers and to develop a substantive theory of their hope experience.<p>
Design/Research Approach: Qualitative, constructivist grounded theory <p>
Setting: Participants homes in a small Canadian city<p>
Sample/Participants: Thirty interviews with thirteen women, ages 60-79, within the first year of bereavement after providing care to a spouse with terminal cancer, also twelve hope diaries<p>
Methods/Methodologic Approach: Open-ended, in-depth audio-taped interviews, hope diaries, transcribed verbatim and analyzed using constant comparative analysis<p>
Main Research Variables: Participants descriptions of their experience of hope
Findings: Participants defined hope as a gradual process of regaining inner strength and building self-confidence, to make sense of their totally changed situations. They were learning to stay positive, and move ahead with their lives. Hope was very important to the participants. The participants main concern was losing hope which they dealt with by searching for new hope through finding balance, finding new perspectives, and finding new meaning and purpose. The theoretical model resembles a spiral and takes place within a social context.<p>
Conclusions: Older women who are bereaved after caregiving for a palliative cancer patient are at risk for losing hope and require support as they search for new hope and move through the complex processes of bereavement. <p>
Implications for Nursing/Interpretation: Health care professionals can provide appropriate and effective care that facilitates positive and healthy bereavement outcomes by monitoring bereaved palliative caregivers at risk for losing hope and supporting them as they search for new hope to find their own way through bereavement.
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Cultural Competency in Hospice Care: A Case Study of Hospice TorontoJovanovic, Maja January 2008 (has links)
The population demographics of the greater Toronto Area are rapidly changing, with visible minorities comprising 43% of the GTA, and 10% of the total adult population of Canada. It is incumbent upon the health care sector to accommodate these changes in a culturally competent manner. Health care and culture intersect in the most delicate of ways during the last stages of life. The health care system must ensure that minorities have an equal access to end-of-life health care services and that their individual cultural beliefs and values are respected by culturally competent health care providers. Hence, this thesis examines the current state of cultural competence in hospice and palliative care in the Greater Toronto Area. This study will show the strengths and limitations of the current hospice care in terms of providing culturally competent care. To explore this topic in greater detail, my research is guided by the following questions:
1) What is the current state of culturally competent care in a hospice setting?
2) What are the challenges to providing culturally competent care in a hospice in the Greater Toronto Area?
3) What are some possible strategies for increasing competency within a hospice setting?
To explore my research questions fully, I provide a critical analysis of six cultural competency theories, while integrating a social determinants of health framework, focusing on the theory of social exclusion and minority health care. This case study analysis is enhanced by the 14 in-depth interviews of hospice volunteer participants and 1 administrator. There are six major findings in this research. First, volunteer participants encountered cultural clashes when their levels of cultural competency were weak. Second, volunteer participants revealed there was a lack of adequate cultural competency training with the hospice. Third, volunteer participants gave abundant suggestions for improving cultural competency training. Fourth, volunteer participants perceived the hospice to be unsupportive of some of their needs. Fifth, the lack of ethnic, cultural and linguistic diversity of the hospice volunteer participants was noted. Last, the lack of religiosity amongst the volunteer participants was surprising.
This research is significant for its Canadian hospice volunteer focus and the findings will be beneficial in practice for patients, their families, volunteers, and other health care providers, by providing the knowledge and tools necessary to enhance their level of cultural competency.
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