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clinmed/2000040001v1 (October 29, 2000)
Contact author(s) for copyright information

Clinical Outcomes in Terminally Ill

Patients Admitted to Hospice Care:

Diagnostic and Therapeutic Interventions

Luis Vitetta1 David Kenner2 David Kissane3 Avni Sali4

 

1Senior Lecturer

4Professor and Head

Graduate School of Integrative Medicine,

Swinburne University,

Melbourne

email:    LVitetta{at}swin.edu.au

 

2Director, Victorian AIDS Palliative Care Consultancy,

The Alfred Hospital,

Palliative Care Physician,

Oncology Department, Box Hill Hospital,

Melbourne

email:    d.kenner{at}alfred.org.au

 

3Professor and Director

Centre for Palliative Care

Caritas Christi Hospice, Kew

Correspondence

Dr L.Vitetta, Senior Lecturer and 

Director of Research

Graduate School of Integrative Medicine,

Swinburne University, 

PO Box 218 

Hawthorn Victoria Australia 3122.

Previously 1997-1998

Dr L Vitetta, Senior Research Associate,

Centre for Palliative Care, Caritas Christi Hospice.

Dr D Kenner, Palliative Care Physician, 

Centre for Palliative Care, Caritas Christi Hospice and 

St Vincent’s Hospital Melbourne.

 

 

 

 


ABSTRACT

 

 

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).   Euthanasia was not recorded as a requested intervention by any patient in this cohort.  This may be in part, be a reflection of the significant family support most of these patients received. 

 

Key Words: interventions, diagnostic, therapeutic, palliative care, symptom control, survival,

INTRODUCTION

 

 

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.   Palliative care has traditionally concentrated on the last weeks of life, the time when pain and other symptoms, including psychological distress, are often prominent and difficult to control. Patients admitted to hospice care usually have no indications for further active treatment for their underlying principal disease state3, and routine performance of diagnostic interventions to monitor disease progress is inappropriate. Although such interventions may be routinely performed in hospitals by oncologists and physicians, they are not in the hospice-palliative care arena.  Patients with similar disease outcomes may thus be receiving quite different diagnostic and therapeutic interventions that are dependent on the site of care and the health care team delivering the care.  To unnecessarily prolong life via the use of diagnostic and /or therapeutic procedures, when patient improvement is unlikely or minimal, is both inappropriate and potentially distressing to both patient and family members alike.1-3   Accordingly, inpatient hospice interventions should be delivered with the paramount goal of symptom palliation.

 

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.


 

Patient Variables

 

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.

 

 

Study Definitions

 

Variable                                            Definition

 

Primary Family Carer                                       Spouse, partner, adult offspring, 

                                                                       relative or friend caring for patient

Family Support                                    The presence of a supportive carer(s),  

                                                                       present during admission, and particularly  

                                                                       the last week of life and at death.

Family Conflict                                    Significant interpersonal conflict-hostility 

                                                                       noted between patient, carers or family 

                                                                       members and recorded on at least two

                                                                       occasions in the patient file.

Comfortable Death                                          Death unaccompanied by significant pain

                                                                       or other physical or psychological  

                                                                       distress, as recorded by nursing staff in

                                                                       patient file.

Co-morbid Condition                                      Accompanying condition / pathology

                                                                       unrelated to primary diagnosis.

De Novo Symptoms                                        Symptoms developing during inpatient

                                                                       stay in hospice care, these not being

                                                                       present on admission.

Catastrophic Events                                         Those unforeseen events leading to an

                                                                       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.

Diagnostic Interventions                                Any intervention requested by

                                                                        physician for symptom investigation

Therapeutic Interventions                                 Any intervention given to ameliorate

                                                                       symptoms


 

 

Statistical Analysis

 

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

 

Patient survival in this cohort was estimated using the Kaplan-Meier method.19  Survival analyses was performed using the Cox regression to assess the association between survival time and diagnostic and therapeutic interventions while controlling for potential confounders, as well as examining the importance of other variables.  In this study, the Cox regression hazard ratio expressed the association between survival and a variable.  A risk ratio or hazard risk greater than 1 was associated with a shorter survival time and thus a higher risk of death, and conversely a risk ratio below 1 was associated with a lower risk of death and a longer survival time.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.

 

 

RESULTS

 

 

Patient Characteristics on Admission

 

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).


 

Patient Diagnoses and Clinical Characteristics

 

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).


 

Symptoms on Admission

 

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.


 

New Symptomatology and Catastrophic Events in Hospice Care

 

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).  Catastrophic events that lead to sudden death were observed in 11 patients, of which 10 were diagnosed with malignant diseases and 1 other with an admission diagnosis of a cerebrovascular accident.  Catastrophic events consisted of hemorrhages [gastro-intestinal (4), cerebral (1), intra-abdominal (1)]; pulmonary emboli (3); septicemia (2); aspiration pneumonia (1), hypostatic pneumonia (1), status epilepticus (1) and cerebrovascular accident (1).  Median survival in this group of patients was 10 days (IQR 17 days).

 

 

DISCUSSION

 

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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