Division of General Internal Medicine, University Health Network, Department of Psychosocial Oncology and Palliative Care, Princess Margaret Hospital, University of Toronto, Toronto, Canada. firstname.lastname@example.org
Terminally ill patients and their families are often referred to as being "in denial" of impending death. This study uses the qualitative method of discourse analysis to investigate the usage of the term "denial" in the contemporary hospice and palliative care literature. A Medline search (1970-2001) was performed combining the text words "deny" and "denial" with the subject headings "terminal care", "palliative care" and "hospice care," and restricted to English articles discussing death denial in adults. The 30 articles were analysed using a constant comparison technique and emerging themes regarding the meaning and usage of the words "deny" and "denial" identified. This paper focusses on the theme of denial as an individual psychological process. Three dominant subthemes were distinguished: denial as an unconscious "defence mechanism", denial as "healthy" and denial as temporary. The analysis focusses on the intertextuality of these themes with each other and with previous texts on the denial of death. Elements of the psychoanalytic definition of denial as an unconscious defence mechanism are retained in the literature but are interwoven with new themes on patient choice. The result is an overall discourse that is conflictual and at times self-contradictory but overall consistent with the biomedical model of illness. I suggest that the representation of death denial elaborated in these articles may be related to a larger discourse on dying in contemporary Western society, which both invites patients to participate in the planning of their death and labels those who do not comply.
We provide preliminary psychometric results concerning the use of a modified FAMCARE scale, adapted for patient use, to assess satisfaction with outpatient care in advanced stage cancer patients.
Participants were 145 outpatients with advanced cancer who were participating in a phase II trial of an outpatient palliative care intervention. Patients completed our modified FAMCARE measure of patient satisfaction and the Edmonton Symptom Assessment Scale, a measure of symptom burden. Individuals were also assessed for performance status using the Eastern Cooperative Oncology Group scale. We conducted an exploratory factor analysis of the patient satisfaction measure and performed correlations of satisfaction with symptom burden as well as with performance status.
Factor analysis of the satisfaction measure revealed a one-factor structure and suggested the removal of one nonloading item, producing a 16-item scale (FAMCARE-P16) with high internal reliability. Patient satisfaction was not correlated with performance status, but was inversely associated with symptom burden, particularly with depression and anxiety.
The FAMCARE-P16 may be used to assess satisfaction with outpatient palliative care interventions of patients with advanced stage cancer in both clinical settings and prospective trials.
It has been observed that certain cancer symptoms frequently occur together. Prior research on symptom patterns has focused mainly on inpatients, early stage cancers, or a single cancer type or metastatic site. Our aim was to explore symptom clusters among outpatients with different advanced cancers.
Symptom scores by the Edmonton Symptom Assessment Scale (ESAS) were routinely collected for patients attending the Oncology Palliative Care Clinics at Princess Margaret Hospital from January 2005 to October 2007. Principal component analysis (PCA) was performed for the entire patient cohort and within specific disease sites to determine inter-relationships of the nine ESAS symptoms.
A total of 1,366 patients was included: 682 (50%) were male and 684 (50%) were female. The median age was 64 years (range 18 to 74 years). The most common primary cancer sites were gastrointestinal (27%), lung (14%), and breast (11%). The three most distressful symptoms were fatigue, poor general well-being, and decreased appetite. PCA of symptoms for the entire patient cohort revealed two major symptom clusters: cluster 1 included fatigue, drowsiness, nausea, decreased appetite, and dyspnea, which accounted for 45% of the total variance; cluster 2 included anxiety and depression, which accounted for 10% of the total variance. There was high internal reliability in the clusters (Cronbach's alpha coefficient approximately 0.80). PCA of symptoms within the various primary cancer sites revealed differences in the pattern of symptom clusters.
In patients with advanced cancers, distinct symptom clusters can be identified, which are influenced by primary cancer site. Treatments directed at symptom clusters rather than individual symptoms may provide greater therapeutic benefit. Further prospective studies are warranted in order to develop more effective targeted palliative interventions for the advanced cancer patient population.
This paper describes the quality of life and symptom burden of 211 cancer patients admitted to an acute palliative care unit (PCU) in a comprehensive cancer centre. Participants completed the McGill Quality of Life Questionnaire (MQOL), Edmonton Symptom Assessment Scale (ESAS), Short Orientation-Memory-Concentration Test, and Palliative Performance Scale within 24 hours of admission to the PCU. The mean MQOL total was 6.1 +/- 1.4, and the mean single-item scale score was 4.9 +/- 2.4. The mean total ESAS score was 36.3 +/- 15.8, with a median of six reported symptoms. Women and younger patients reported a lower quality of life (QoL) and a higher symptom burden. Regression and correlational analyses highlighted the importance of the existential and psychological domains to overall QoL. These findings emphasize the need for interdisciplinary, collaborative approaches to managing the complex physical, psychosocial, and existential needs of cancer patients admitted to acute PCUs.
Although psychosocial care has been regarded as central to palliative and supportive care, there have been few empirically tested approaches to individual intervention.
The subjective experience of advanced cancer patients receiving a new manualized brief individual psychotherapy, referred to as Managing Cancer and Living Meaningfully (CALM), was examined prior to the initiation of a randomized controlled trial testing the effectiveness of this intervention.
Semi-structured interviews were conducted with patients who had a diagnosis of advanced cancer, and who underwent the intervention.
Patients were recruited from a large urban regional cancer center in Toronto, Canada. The 10 interviewees included seven women and three men. All had completed between three to six CALM sessions prior to the interview.
The CALM intervention was associated with profound and unique patient-identified benefits and no patient-identified risks or concerns. Five interrelated benefits of the intervention were identified: (1) a safe place to process the experience of advanced cancer; (2) permission to talk about death and dying; (3) assistance in managing the illness and navigating the healthcare system; (4) resolution of relational strain; and (5) an opportunity to 'be seen as a whole person' within the healthcare system. These benefits were regarded by participants as unique in their cancer journey.
Findings from a qualitative study suggest that the CALM intervention provides substantial benefits for patients with advanced cancer prior to the end of life. Findings informed the development of a randomized controlled trial to evaluate the effectiveness of this intervention.
Most Canadians die in inpatient settings. Our aim was to determine the availability of medical services, programs, and care for common palliative procedures, in hospices, palliative care units (PCUs), and hospital medical wards (MWs) providing inpatient palliative care in Ontario, Canada.
We identified facilities providing inpatient palliative care using the Ontario Hospital Association (OHA) and Hospice Association of Ontario (HAO) websites. An electronic survey was sent to the person responsible for palliative care at each facility. We compared services available among the three types of units, using Fisher's exact and Kruskal-Wallis tests.
Of 128 surveys sent, 102 (80%) were completed and returned, from 58 MWs, 31 PCUs, and 13 hospices. MWs were the most common location of palliative care overall, particularly in rural areas. PCUs were most likely to provide care for common procedures (e.g., tracheostomy, nephrostomy; p
Cancer physicians frequently interact with dying patients, but little is known about these physicians' practices. The purpose of this study was to evaluate the frequency and nature of bereavement practices among medical oncologists (MOs), radiation oncologists (ROs), and palliative care specialists (PCs); and to identify factors associated with bereavement follow-up.
Survey of all Canadian MOs, ROs, and PCs via their respective national organizations using an anonymous electronic and postal mail survey.
A total of 535 of 756 eligible physicians completed the survey (71%). Overall, 33.3% (95% confidence interval [CI], 29.3%-37.4%) of respondents indicated that they usually or always make a telephone call, send a condolence card, or attend a funeral following a patient's death; 30.5% (95% CI, 26.5%-34.4%) reported performing at least 1 of these practices sometimes; and 36.2% (95% CI, 32.1%-40.3%) reported performing at least 1 of these practices rarely or never. Among the specific practices, respondents were more likely to call a family at least sometimes than to send a condolence card or attend funeral services. Palliative care specialists reported the highest rates of bereavement follow-up. In multivariate regression analysis, female sex, working in an academic setting, palliative care specialty, lack of formal palliative care program, endorsement of the statement that physicians had a responsibility to send a condolence card, and high number of patient deaths were associated with more frequent bereavement follow-up.
Few cancer physicians provide bereavement follow-up routinely. This suggests that consensus is lacking among cancer physicians regarding their role in bereavement care.
It is increasingly recognized that complete care of the patient with cancer includes palliative care, which is applicable early in the course of illness, in conjunction with life-prolonging treatment. Princess Margaret Hospital (PMH) is Canada's largest center for cancer care and research, and it is an international referral center for patients with cancer. The Palliative Care Program at PMH has developed into a comprehensive clinical, educational, and research program, with an acute palliative care unit, daily palliative care clinics, a cancer pain clinic, and a consultation service that sees urgent consultations on a same-day basis in inpatient and outpatient areas. We will describe the components, successes, and challenges of our program, which may be useful for others, who are developing palliative care programs in an academic setting.
Performance status (PS) scales are used widely in oncology practice and research. We compared inter-rater agreement, between nurses and physicians, for three commonly used PS scales.
Patients attending an oncology palliative care clinic were assessed by a physician and nurse who blindly completed Eastern Cooperative Oncology Group (ECOG), Karnofsky PS (KPS), and palliative PS (PPS) scales. Patients completed the Edmonton symptom assessment system (ESAS).
Inter-rater agreement (weighted kappa) for the 457 patients was 0.67 for the ECOG, 0.74 for the KPS, and 0.72 for the PPS. There was no difference between proportions of physicians' vs. nurses' ratings of KPS, >60 vs.
We examined administrative outcomes after opening an oncology acute palliative care unit (APCU), to determine attainment of administrative targets related to the unit's function of acute palliation.
We retrospectively reviewed the administrative database for our APCU for the 5 years following its opening in 2003. Data were abstracted on demographic information, as well as source of admission, primary reason for admission, discharge destination, inpatient death rate, and length of stay. Linear regression and the Cochran-Armitage trend test were used for analysis. In keeping with targets set at the unit's opening, our primary hypotheses were that outpatient admissions, admissions for symptom control, and discharges home would increase over the study period; secondary hypotheses were that length of stay and inpatient death rate would decrease.
There were 1748 admissions during the study period: the median age was 64, 54% were women, and the most common cancer sites were gastrointestinal (24%), lung (20%), and gynecologic (13%). There were significant changes for all primary endpoints: outpatient admissions increased from 47% to 70% (p