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clinmed/2000040001v1 (October 29, 2000)
Contact author(s) for copyright information
This
study retrospectively reviewed the clinical, symptom profile, illness
trajectory and the diagnostic and therapeutic interventions delivered to 102
consecutive patients (50 males, and 52 females). The average age (SD) of males was 72.3 years (11.1) [range:
42.8-89.7] and of females 73.1 years (13.2) [range: 31.6-96.2]. Ninety-four patients (92.2%) were admitted
for palliation of symptoms due to malignant disease and 8 other patients (7.8%)
for non-malignant diseases. A high
proportion of patients had poor performance status (81%) or significant pain
(81%) on admission. The overall median
survival was 12 days [25%-75% inter-quartile range: 4-29 days]. On admission elevated
univariate hazard risks for survival were significantly associated with male
gender [6.5 to 18 days, (P=.03)], metastatic disease [62.8%
(95%CI, 53.2-72.3% P=.002)], and dyspnea [23.5% (95%CI, 15.7-33.0% P=.005)]. Adjusted Charlson co-morbidity
scores were associated with significantly decreased survival with increasing
scores (P=.002).De novo symptoms (P=.04) and diagnostic interventions
(P=.0001) were associated with decreased univariate risk rates and hence
increased survival. Palliative
therapeutic interventions were not significantly associated with increased
patient survival (P = .9). A
multivariate model of survival showed that pain, dyspnea, immobility, and
adjusted Charlson co-morbidity scores were independent risks
for decreased survival (P<.05) and diagnostic interventions was significant
for increased survival (P<.001).
Key Words: interventions, diagnostic, therapeutic,
palliative care, symptom control, survival,
The
unifying goal of all palliative care services is the provision of efficient palliation for the terminally ill and support for
their families.1,2 All
palliative care providers have similar goals, and that is to achieve effective
symptom palliation for the terminally ill, with major differences existing
between groups providing palliative care with regard to the use and
implementation of diagnostic and therapeutic interventions3.
Diagnostic procedures include blood tests (heamatologic and biochemical
screens), radiologic investigations (plain x-rays, CT scans), ultrasonic scans,
microbiologic tests, and the use of symptom assessment tools.Therapeutic
interventions are multi-dimensional modalities. These include the
administration of oxygen therapy, hydration therapy, nutritional therapy,
transfusion of blood products, thoracic and abdominal paracentesis,
pharmacotherapy and anaesthetic procedures for pain and symptom management;
specialist medical consultations (eg surgical, psychiatric), allied health
consultations (occupational therapy, physical therapy) and psychosocial
interventions by pastoral and social care workers3-11.In Australia
over 21,000 patient deaths occur under palliative care services and some 10,000
inpatient hospice deaths occur annually12.
We have retrospectively
investigated and documented the prevalence of symptoms, both on admission, and subsequently,
during the final phase of care, in 102 consecutive hospice patients.A patient
survival analysis based on admission symptoms and factors was conducted to
identify significant independent survival outcomes.
METHODS
Patient Source
At the time of this study,
Caritas Christi was a 72-bed hospice with 52 dedicated palliative care
beds.During 1997-1998 there were 1066 admissions of patients who required
symptom palliation for terminal illness15.Six hundred and eighteen
deaths were recorded in this period.
Hospice policy is that all terminally ill patients admitted to care have
no orders for cardiopulmonary resuscitation. This study consisted of 102
consecutive adult patients of whom 50 were males and 52 females. Patients were admitted for symptom
palliation for terminal malignant disease (92.2%), and non-malignant illnesses
(7.8%).All patients had died at the time of this survey.
From
the medical files of the patients we retrospectively obtained information on
patient demography, consisting of gender, age, and the presence or absence of
associated primary family carers, family support or conflict. Clinical details
of disease diagnosis, symptoms on admission, co-morbid conditions, diagnostic,
and therapeutic interventions were noted along with, de novo symptoms
and catastrophic events, and the presence or absence of a comfortable death and
/or terminal restlessness.17
Patient
files were reviewed concurrently and randomly by two authors (1 and 2), with a
detailed inspection of the clinical summary documenting history of
illness, major / minor problems on admission, management issues, and
procedures. Progress notes, including consultation replies, drug
charts, and detailed nursing care plan and summary charts were
reviewed. These latter summaries
provide information on patient behavior and cognition, anxiety, restlessness,
anorexia, cachexia, asthenia and mobility, as well as family support. A
comfortable or peaceful death is subject to the perception of others; it is
ultimately an intrinsic quality14. We have endeavored to delineate
all extrinsic factors such as pain and symptom control prior to ascertaining
that a patient had a comfortable or peaceful death. A co-morbidity score based on the Charlson index score15, 16
was calculated for each patient.
This was based on patient co-morbidities already present, or which had
recently developed and were detected during this admission phase of terminal
care. The Charlson index is a score
assigned to patients based on the presence of certain diseases with assigned
values, with theoretical scores that range from 0 to 37.An adjusted score was
calculated that excluded the primary diagnosis on admission, thus controlling
for the primary diagnosis.
Primary Family Carer Spouse, partner, adult offspring,
relative or friend caring for
patient
present during admission, and
particularly
the last week of life and at death.
noted between patient, carers or family
members and recorded on at least two
occasions
in the patient file.
or other physical or psychological
distress, as recorded by nursing staff in
patient file.
unrelated to primary diagnosis.
stay in hospice care, these not being
present on admission.
untimely death during the progress phase
of terminal care.
Terminal Restlessness Agitated delirium in a dying
patient,
accompanied by distressed vocalising,
frequently associated
with impaired
consciousness and multifocal myoclonus,
the latter sometimes progressing to
recurrent convulsions13.
a
symptoms
The patient group for this cohort comprised a
systematic sample selected from the hospice population.Patient eligibility
consisted of the outcome ‘death on last admission’. Survival time was calculated as the number of days from this
admission to death. No extrapolated
survival times were used, as all patients were deceased at the time of data
collection. The same member of the
medical records department effected the at random selection of the patient
files.
A single point prevalence was calculated for
demographic variables, clinical symptoms on admission, and diagnostic and
therapeutic procedures from the closed medical files following death of the
patients. Results were presented as medians (IQR) or means (SD) when required
and exact 95% confidence intervals were calculated for prevalence on admission
of diagnoses and symptoms.
A detailed clinical profile of each patient was
delineated from the hospice file. Symptoms with a prevalence³ 20% were identified and incorporated into a
multiple regression analysis equation. These included, metastatic disease,
severe pain, dyspnea, immobility, weakness, loss of appetite, nausea and
vomiting, confusion and anxiety and/or depressive states on admission. Additional patient characteristics
identified were the presence of a primary family carer, family support whilst
in hospice care, diagnostic interventions, therapeutic interventions, de
novo symptoms and catastrophic events.
The Kruskal-Wallis test was used to test the difference in medians
between groups.17,18
Univariate and multivariate risks for survival were
calculated for each variable for comparisons of trends of confounding
variables. Number of days of survival
in hospice care was the dependent variable, with time (t0) being the
designated entry time point into the study, this being on the last admission
date.
General
patient demographic and survival characteristics are presented in Table 1. The
mean (SD) age of the patients was 72.7 (12.2) years.The mean (SD) age of the 50
males was 72.3 (11.1) years (range: 42.8-89.7), and of the 52 females it was
73.1 (13.2) years (range: 31.6-96.2).The mean (SD) survival of all patients was
30 (60.9) days [95%CI:18.5-49.1], with an overall patient median survival of 12
days. The median survival of women was
longer than that of men, being 18 and 6.5 days respectively (P=.03). Approximately, two-thirds (64.7%) of the
inpatients were living with a primary carer at the time of admission. Inhospice median length of survival was 19.0
days in those patients with family support (P=.03).
Ninety-four
(92.1%) of the 102 patients were diagnosed with some form of malignant disease.
The malignant diagnoses are given in Table 1.In the 8 patients with
non-malignant disease, the diagnoses consisted of, cardiorespiratory failure
(3), cerebrovascular accident (2), chronic heart failure (1), multiple
sclerosis (1), and systemic lupus erythematosus (1). On admission, one or more co-morbidities were
identified in 70 patients (62 with malignant disease and 8 with non malignant
diagnoses).There were 55 different co-morbid conditions assessed and they were
extensive and varied. They consisted
predominantly of Metabolic [NIDDM(12) Hypothyroidsm(10) CRF(4)], Cardiovascular[CHF(7)
DVT(7) IHD (6) AF(5)], Pulmonary [COAD(7) Pneumonia (7)], and Central
Nervous System [Psychiatric(2) Dementia(2) Seizures(2) Other (6)]
conditions. Diminished survival was
significantly associated (P<.05) with increasing adjusted Charlson
co-morbidity scores. The mean (SD)
Charlson Index co-morbidity score was 6.7 (3.3), and the adjusted mean (SD)
score was 4.8 (3.2).Median patient survival according to adjusted scores
reflected a significant decrease in survival with an increase in score [27 days
(score:0-2); 15 days (score:3-4); 8.5 days score:³7) (P<.05)].
Assessment
of metastatic disease on admission was an important corollary to the
co-morbidity profile of the terminal patient.
The presence of distant metastases was documented in 64 (68%) patients,
with multiple and single organ metastases in 39 and 25 patients respectively.
The most common metastatic organ sites in descending frequency were liver (23
patients 22.6%), bone (14 patients 13.7%), brain (11 patients 10.8%), lymph nodes
(10 patients 9.8%) and lungs (10 patients 9.8%).Correcting for patients with
non-malignant disease, patients without metastases had a higher median survival
[23.5 versus 10.0 days (P=.002)] than patients with metastatic disease. This result further confirming the trend,
that survival was decreased with increasing disease complexity and malignancy.
Patients with primary neurological malignancies had the highest median
survival (32 days, P=.01). Severity of patient illnesses in
this cohort was further indicated by the inability to cope at home exhibited by
primary carers and documented by the medical staff on admission. Patients in this cohort were admitted for
terminal palliation of their multiple complex symptoms and as a consequence
forty-three (42.2%) patients died within the first week of admission and a
further 15 (14.7%) patients died within 14 days of admission (Table 1).
The
predominant symptoms reported on admission consisted of pain in 88 patients (86.2%)
which was severe in 19 patients, weakness in 62 patients (60.8%), and poor or
impaired mobility in 83 patients (81.4%) (Table 2).The use of a visual symptom
analogue scale such as the Edmonton Symptom Assessment Schedule (ESAS)20
for patient self reporting of symptom assessment was significantly associated
with longer survival, with the median survival of these patients being 27 days
(P=.03).The ESAS was employed in 15(14.7%) patients, 13 with malignant
diagnoses and 2 with non-malignant diagnoses. One third of these patients had diagnoses with a long-term
prognosis and on correction for this, increased survival was still significant
in this subgroup (P<.05).
Diagnostic and Therapeutic Interventions: Patient
Selection, Symptoms and Length of Survival
Forty-one
patients had one or more diagnostic interventions of the total 120
interventions requested (Table 3). Of the 43 patients who died within a week of
admission, only 5 patients had any diagnostic interventions ordered. Diagnostic interventions were significantly
associated with longer patient survival (P=.0001), median survival being 27
days. Serum urea and electrolytes, full
blood estimates and serum calcium and phosphate levels were the most requested.
Further, only 12% of the patients in this group failed to survive more than a
week in hospice care. Eighty patients (78.4%) received
one or more therapeutic interventions whilst in hospice care. In this cohort of patients therapeutic
interventions were not associated with increased survival (P=.9). Oxygen therapy was used in 38 patients and
was the most immediate life sustaining intervention used. Survival was shorter in those patients
receiving oxygen therapy, the median survival being 6.5 days
(P=.04).Stratifying the number of therapeutic interventions showed that those
patients receiving 2 interventions had a significantly longer illness
trajectory (P< .05) (Table 3).
Kruskal-Wallis
tests of median survival between groups showed that male gender, adjusted
co-morbid Charlson scores, metastatic disease, dyspnea, and de novo
symptomatology were significantly associated with decreased survival (P<.05)
(Table 4).Alternatively, family support, mobility on admission and diagnostic
interventions were significantly associated with increased survival
(P<.05). Employing a multivariate
regression predictive survival model, severe pain, and dyspnea (P<.05) on
admission were significantly associated with decreased survival (Table 4).If
the patient was ambulant on admission, mobility was significantly associated
with increased survival (P<.05).
Univariate
Cox hazard ratios were used as comparisons to multivariate hazard ratios, to
investigate the change in risk of survival.
Male gender was the only characteristic that showed a significant
univariate risk associated with decreased survival. It became non-significant in the overall multivariate model
(Table 4).
Diagnostic
interventions risk ratio for survival remained essentially the same. It was observed to be significantly
associated with increased duration of patient survival (P<.001), with a
multivariate hazard risk of 0.35 (95%CI, 0.19-0.52).When considering the
multinomial survival hazard risks increased pain, dyspnea, decreased mobility,
and increasing adjusted Charlson co-morbidity scores were significantly
associated with decreased survival.
Diagnostic interventions were significantly associated with increased
survival.
De
novo symptoms while in hospice care
were recorded in only 42 patients. They were distributed among CNS [cognitive
impairment (8) depression (2) status epilepticus (1)]; infections [septicemia
(5) UTI (4) forearm abscess (1)]; cardiovascular[angina (1) cerebrovascular
accident (1) AF (1) DVT (1) cardiac failure (1)]; gastrointestinal[nausea and
vomiting (1) bowel obstruction (1) hematemesis (1) gastro-intestinal hemorrhage
(1)]; urogenital (4); new pain (4); metabolic (2); drug toxicity (2);
andpathological fractures (4). Only 5
patients with a new symptom progressed to a catastrophic event with the
subsequent loss of life. All of these
patients were diagnosed with malignant diseases. Median survival in this group was 17 days (IQR 25 days).
Although
developments in palliative care in Australia have been well documented,21,22
as has decision making at the end of life, including issues surrounding
euthanasia,23-29 the detailed clinical, interventions, trajectory of
illness and outcomes of terminally ill patients admitted to hospice care have
rarely been documented. In this
retrospective survey we have endeavored to describe in detail the management of
terminally ill patients in their final phase of care, following admission to a
tertiary palliative care unit.
Retrospective chart reviews have significant limitations in that they
can only collect data that has been documented in the patient file and
therefore are prone to both systematic and random errors that can lead to
inaccuracies in measurements. Study
design strategies are intended to reduce the sources of these errors. In order to reduce these errors, the patient
files were comprehensively and systematically investigated by two of the
authors only after death of the patient had occurred and all relevant
documentation filed.
Implicit
in the philosophy of modern palliative care is a ‘low key’ approach to
investigation and treatment of the terminally ill, with the goal of providing care,
which is appropriate and yet not burdensome for both the patient and their
families. Whether the patient is an
inpatient in a hospital or hospice, optimal symptom control especially for
those with advanced cancer depends upon a detailed analysis and diagnosis of
the underlying mechanism(s). A careful
and thorough selection of the appropriate diagnostic and therapeutic maneuvers
is imperative and these must be individualized for each patient.
It was
noted in this study that mortality due to breast cancer was lower than that
expected from age-standardised rates for Victoria.30 Since patients with breast cancer have an increased median
survival when compared to many hospice patients with other tumour
types, the death dependent nature of this descriptive cohort introduced a
selection bias against individuals with longer-term
survival. In addition, some patients with advanced but
potentially treatable breast cancer are more likely to be admitted, treated and
to succumb in acute hospital oncology units, further biasing these results.
Symptoms
of patients with terminal illnesses attending Caritas Christi have been
previously documented. Briggs31 reported a median length
of stay of 16 days in his series. In
our study it was 12 days, and most patients were of advanced age with poor
ambulatory status, unstable pain, dyspnea, asthenia and cachexia. Symptom complication and disease severity
was such that approximately 80% of the patients were admitted to hospice care because
they and/or their carers could not cope at home. Multiple symptoms were present in this patient cohort.
Notwithstanding the limitations imposed by the Charlson co-morbidity scores32,
they did reflect the overall severity of co-morbid illness in our series. The
higher the number and complexity of co-morbid conditions recorded on admission,
the shorter was the survival length observed.
Moreover
when metastatic disease was considered, it was also a direct indication of decreased
survival.As expected patients with metastases survived significantly less, than
in those patients without metastatic disease.
Prediction of life expectancy in terminally ill patients and associated
symptoms and signs reflecting length of patient survival are important issues
which concern both palliative care providers and patients’ relatives.33-37 Prognostic
symptoms significantly associated with a decreased survival in this cohort were
severe pain and dyspnea on admission, and poor ambulatory status. Episodes of haematemesis and melaena,
although present in low numbers, were clinical events that were also indicative
of decreased survival. De novo symptomatology
was present in 42 (41%) patients; in only 5 patients did this herald a later
catastrophic event that led to premature death. Central nervous system dysfunction and infective disorders
comprised almost 50% of all new symptomatology in this patient cohort. Almost
70% of these patients received some form of diagnostic intervention. Although
this may have led to better symptom control and increased survival, we believe
that it more likely reflects appropriate patient selection for procedures,
patients with a better prognosis being judged as being more likely to
clinically benefit from such an intervention by staff. Thirty-nine patients
(38.2%) developed terminal restlessness.8
The
prevalence of catastrophic events leading to unexpected patient death was
approximately 16%. De novo
symptoms heralding a catastrophic event were observed in one third of these
patients. Catastrophic events, did not
have a significant effect on decreasing survival in this patient subgroup
compared to the overall cohort.
The
regression survival model showed that longer in-hospice survival was
significantly associated with diagnostic interventions. Median survival among these patients was
more than twice that of the overall cohort. Controlling for long survivors such
as those with breast cancer or glioblastomas, survival was still longer in
those patients undergoing diagnostic interventions. Some of these interventions
may have prompted immediate medical intervention, with appropriate alteration
to therapy, and resultant enhanced survival. It would appear more probable,
however, that those patients appropriately selected for diagnostic
interventions were further from death, and thus had an inherently better
prognosis. Analysis showed that these
patients were not younger, more likely though that they were diagnosed with a
less rapid trajectory.
The
most frequent intent of medical technologies in the palliative setting, despite
their capacity to support life, is to promote comfort until patient death
eventuates.14,39,40 Of significance in this study was the
association between a comfortable death and the presence and support of family
members at the time of death. Requests
for euthanasia in terminally ill patients have been reported to be in the range
of 3.6 to 11%. 23-29 Clinical management issues associated with
such requests were not documented in this cohort of patients, and to the best
of our knowledge there were no recorded requests. It is likely, however, that some of these
patients may have desired death, and possible that some expressed this desire,29
and the interchange was not accurately
recorded in the file. In addition to
the pain relief the desire for personal control is an important factor in
requests for euthanasia41 and there were no accurate documentations
of such patient wishes in this cohort.
Approximately
two-thirds of the patients (65%) had a primary family carer, in 10% of cases there appeared to be
significant family conflict. This
figure is somewhat less than the approximately 18% incidence of family types
exhibiting a ‘hostile’ or ‘sullen’ psychological profile, and in significant
conflict, as described in a local study of cancer patients by Kissane42. It is possible that some family conflict may
have gone unrecognised, or was under-recorded in the patient file. Nevertheless
our study supports the concept that the management of a comfortable
death in this series of patients and their respective families was enhanced by
the calm hospice environment, effective symptom control, and augmented by the presence of a family member near
the time of death. Interventions were
assessed
to be medically initiated rather than patient
requested.
A multi
professional approach to palliative care is both beneficial in terms of cost
and patient time spent in acute hospital settings.42 Recent studies have reported on the
efficacy of palliative care teams to improve outcomes for cancer patients.43-48 These reports suggest that patients with
terminal illness would benefit by the multidisciplinary approach to symptom
palliation provided in a hospice environment.
In this
study cohort, a multidisciplinary approach to care was provided with nursing,
medical, allied health and psychosocial therapeutic interventions. Such an approach together with appropriate
clinical interventions appeared to achieve significant patient symptom
palliation and a high prevalence of a documented comfortable death.
Acknowledgements: This study was generously
supported in part by the Bethlehem Griffiths Research Foundation.We thank Dr A
Ugoni, lecturer in statistics, University of Melbourne, for assistance with our
statistical methodology, and Mr M Ng, Caritas Christi medical records
department, for his assistance in gathering the patient files.
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