Impact of palliative care consultative service on disease awareness for patients with terminal cancer

Purpose

Awareness of the status of disease among terminally ill cancer patients is an important part of the end-of-life care. We have evaluated how palliative care consultative service (PCCS) affects patient disease awareness and determined who may benefit from such services in Taiwan.

Methods

In total, 2,887 terminally ill cancer patients consecutively received PCCS between January 2006 and December 2010 at a single medical center in Taiwan, after which they were evaluated for disease awareness. At the beginning of PCCS, 31 % of patients (n?=?895) were unaware of their disease status. The characteristics of these 895 patients were analyzed retrospectively to determine variables pertinent to patient disease awareness after PCCS.

Results

In total, 485 (50 %) of the 895 patients became aware of their disease at the end of PCCS. Factors significantly associated with higher disease awareness included a longer interval between the date of hospital admission and that of PCCS referral (>4 weeks versus ≤2 weeks), a longer duration of PCCS (>14 days versus ≤7 days), the male gender, divorced marital status (versus married), and family awareness (versus lack of family awareness). Lower disease awareness was associated with older age (age?>?75 years versus age?=?18–65 years), referral from non-oncology departments, and primary cancer localization (lung, colon-rectum, or urological versus liver).

Conclusions

Disease awareness is affected by multiple factors related to the patients, their families, and the clinicians. The promotion of PCCS increased disease awareness among terminally ill cancer patients in Taiwan.     

Relationships Between Advanced Cancer Patients' Worry About Dying and Illness Understanding,Treatment Preferences,and Advance Care Planning

ContextPatients with advanced cancer often worry about dying. Less is known about the role of worry in decision making regarding future care.ObjectivesTo explore relationships between patients' worry about dying and their illness understanding, treatment preferences, and advance care planning (ACP).MethodsThis cross-sectional study used baseline data from a primary palliative care intervention trial. All participants had metastatic solid tumors. Using patients' response to I worry about dying from the Functional Assessment of Chronic Illness—Palliative Care survey instrument, univariate and multivariate analyses assessed associations with illness understanding, treatment preferences, and ACP.ResultsOf 672 patients, 47% reported worrying about dying not at all, whereas 9.7% worried quite a bit or very much. In regression analysis, compared with patients who reported not worrying about dying, those who reported high levels of worry were more likely to describe themselves as terminally ill (adjusted odds ratio [AOR] = 1.98; 95% CI = 1.10–3.54; P = 0.021) and prefer life-extending therapy over symptom-focused care (AOR = 2.61; 95% CI = 1.30–5.22; P = 0.007). They were less likely to have completed an advance directive (AOR = 0.49; 95% CI = 0.25–0.94; P = 0.032). The same relationships were seen using patients' response to I feel scared about my future from the Herth Hope Index.ConclusionPatients with advanced cancer who worry about dying are more likely to identify as terminally ill and desire life-extending treatment and are less likely to engage in ACP. Understanding how patients cope with worry and make medical decisions is important in providing quality care to these patients.     

Factors That Affect Quality of Dying and Death in Terminal Cancer Patients on Inpatient Palliative Care Units: Perspectives of Bereaved Family Caregivers

ContextThere is an increasing use of palliative care units (PCUs) for the treatment of terminally ill cancer patients. Thus, it is important to evaluate the care and quality of life of terminally ill cancer patients treated in PCUs so that improvements can be made. Limited research has investigated the quality of dying and death in PCUs.ObjectivesThe aim of this study was to identify factors associated with the quality of dying and death for terminally ill cancer patients in PCUs.MethodsData were collected from 570 bereaved family caregivers of terminally ill cancer patients. All patients were registered and died in one of the 40 inpatient PCUs designated by the Korean Ministry of Health and Welfare. We assessed the perceived timing of referral to a PCU; the quality of end-of-life cancer care with the Care Evaluation Scale; and the quality of dying and death with the Good Death Inventory.ResultsThe perception of appropriate timing of referral, use of a community-based PCU, and higher quality of cancer care as assessed by the Care Evaluation Scale were associated with good dying and death in all domains of the Good Death Inventory.ConclusionThe good quality of end-of-life care in a PCU improves the quality of dying in terminally ill cancer patients. The data have the potential to guide the development of interventions aimed at achieving a good quality of dying for patients with terminal cancer.     

Palliative Care in Papua New Guinea

In June and July 2001, Dr. Nell Muirden traveled from Melbourne, Australia to Port Moresby General Hospital and Angau Memorial Hospital located in Lae, in Papua New Guinea. This visit was supported through an International Association for Hospice and Palliative Care Traveling Fellowship. Dr. Muirden's visit greatly increased awareness about cancer pain and the importance of palliative care and pain relief in cancer and other terminally ill patients. She developed a discussion paper relating to the drugs needed for palliative care and the changes that should be made. The Pharmaceutical Advisory Committee subsequently adopted these recommendations, which will lead to a better range of medications to treat pain becoming available throughout Papua New Guinea.     

Magnitude of score change for the palliative prognostic index for survival prediction in patients with poor prognostic terminal cancer

Purpose

The use of the palliative prognostic index (PPI) when used only at an initial assessment might be inappropriate as a prognostic tool because it does not reflect the patient’s clinical course. The purpose of this study was to assess the utility of PPI score change (?score) between two assessments as a prognostic tool in terminally ill cancer patients categorized as having a poor prognosis.

Methods

A total of 1,035 terminally ill cancer patients categorized as having a poor prognosis (initial PPI score >6) under palliative care between January 2006 and December 2011 at a single medical center in Taiwan were selected. Patients were categorized by magnitude of ?score between the initial PPI and week 1 PPI assessments into five groups (20 %) for survival analysis.

Results

The median survival was 22 days (range, 8–180 days) in all patients. Median survival duration was 78, 32, 23, 17, and 14 days, and the death rate at the study end was 78.9, 87.1, 96.2, 100, and 100 % in each group, respectively. The c-statistic value for predicting life expectancy less than 30, 60, and 90 days was significantly higher with magnitude of ?score than with the initial PPI score (p?Conclusions Magnitude of PPI score change within 1-week interval provides a significant difference in survival prediction and is more reliable than initial PPI alone to identify terminally ill cancer patients with better outcome potential in those patients considered to have a poor prognosis.     

Both Maintaining Hope and Preparing for Death: Effects of Physicians' and Nurses' Behaviors From Bereaved Family Members' Perspectives

ContextBoth maintaining hope and preparing for the patient's death are important for families of terminally ill cancer patients.ObjectivesThe primary aim of this study was to clarify the level of the family's achievement of maintaining hope and preparing for death and the professional's behavior related to their evaluations.MethodsA cross-sectional, anonymous, nationwide survey was conducted involving 663 bereaved families of cancer patients who had been admitted to 100 palliative care units throughout Japan.ResultsA total of 454 family members returned the questionnaire (effective response rate, 68%). Overall, 73% of families reported that they could both maintain hope and prepare for the patient's death. The independent determinants of the family's agreement in reference to the professional's behavior are pacing the explanation with the family's preparation; coordinating patient and family discussions about priorities while the patient was in better condition; willingness to discuss alternative medicine; maximizing efforts to maintain the patient's physical strength (e.g., meals, rehabilitation); discussing specific, achievable goals; and not saying “I can no longer do anything for the patient.”ConclusionAbout 20% of family members reported that they could neither “maintain hope nor prepare for death.” A recommended care strategy for medical professionals could include 1) discussing achievable goals and preparing for the future and pacing explanation with the family's preparation, 2) willingness to discuss alternative medicine, 3) maximizing efforts to maintain the patient's physical strength, and 4) avoid saying they could do nothing further for the patient.     

Reframing Views of Terminally Ill Patients and the Radiation Therapists' Role in Their Care through Engaged Scholarship

IntroductionThe purpose of this study is to explore innovative teaching methodologies to reframe radiation therapy students' perceptions of who a terminally ill patient is. This will allow students to better meet their patients' needs in their future work with this unique demographic.MethodsThis qualitative case study explores the experiential and transformational learning that took place when a hospice-based engaged scholarship project was incorporated into a radiation therapy course. Data presented consists of students' individual guided reflection answers and individual student interviews reflecting on their experience working with hospice patients.ResultsThrough this project, students recognized companionship as one of the greatest needs of their hospice patients and planned to use that information in their future clinical practice. Students also gained a better understanding of the difference between curative and palliative treatment and reframed their preconceived notions of the palliative patients they were seeing in the clinic.     

Sources of Palliative Care Knowledge Among Patients With Advanced or Metastatic Gynecologic Cancer

ContextA minority of patients with advanced or metastatic gynecologic cancer utilize palliative care and lack of knowledge may be a barrier to receiving palliative care services.ObjectivesTo identify sources used by patients with advanced or metastatic gynecologic cancer to learn about palliative care and evaluate for differences in knowledge about palliative care and palliative care utilization by knowledge source.MethodsPatients with gynecologic cancer receiving treatment for advanced or metastatic gynecologic cancer at a single academic medical center were surveyed about their awareness of and knowledge about palliative care. Medical chart review was conducted.ResultsOf the 111 women surveyed, 70 had heard of palliative care (63%). Sixty-eight specified from where they learned of palliative care: cancer care (n = 28; 41.2%), word of mouth (n = 26; 38.2%), work (n = 6; 8.8%), self-education (n = 4; 5.9%), personal experience (n = 2; 2.9%), or do not know (n = 2; 2.9%). Knowledge about palliative care (P = 0.35) and palliative care utilization (P = 0.81) did not differ by awareness of palliative care.ConclusionMost women receiving treatment for advanced gynecologic cancer have heard of palliative care from sources other than their cancer care providers. Knowledge about palliative care and source of knowledge about palliative care were not associated with palliative care utilization. Awareness of palliative care and palliative care utilization may be improved by increasing the low rate of health provider-based education and engaging cancer patients' social networks.     

Dying at home: Experience of the Verdun local community service centre

ObjectiveTo demonstrate that it is possible for a team of palliative care nurses in an urban centre to care for more than 50% of their terminally ill patients at home until they die, and that medical care delivered in the home is a determining factor in death at home versus death in a hospital.DesignAnalysis of place of death of terminally ill patients who died in 2012 and 2013 (N = 212) and who had been cared for by palliative care nurses, by type of medical care.SettingThe centre local de services communautaires (CLSC) in Verdun, Que, an urban neighbourhood in southwest Montreal.ParticipantsA total of 212 terminally ill patients.ResultsOf the 212 patients cared for at home by palliative care nurses, 56.6% died at home; 62.6% received medical home care from CLSC physicians, compared with 5.0% who did not receive medical home care from any physician.ConclusionCombined with a straightforward restructuring of the nursing care delivered by CLSCs, development of medical services delivered in the home would enable the more than 50% of terminally ill patients in Quebec who are cared for by CLSCs to die at home—something that most of them wish for.Many articles have been published about the factors that influence the possibility of dying at home for terminally ill patients. When brought together, these factors create a “complete” team of palliative home care professionals, with nursing and medical expertise in palliative home care, 24-hour access to nursing and medical care, access to social workers and occupational therapists able to work with palliative care patients in the home, and home supports, as needed.^1,2 The centre local de services communautaires (CLSC) in Verdun, Que, created such a team.Quebec has a vast network of CLSCs that offer general nursing care; the services of social workers, occupational therapists, and physiotherapists; and various forms of practical support in the home. Very few CLSCs offer dedicated palliative nursing care and even fewer offer medical care in the home to terminally ill patients, in spite of the fact that most of these patients want to remain at home and that access to a palliative home care team reduces hospitalizations and in-hospital deaths of terminally ill patients while providing comparable quality of care.³     

Palliative care in Seirei Mikatahara General Hospital Department of Palliative and Supportive Care, Seirei Mikatahara General Hospital

This paper illustrates a brief review of the development process of the palliative care team at the Seirei Mikatahara General Hospital. Palliative care team has been first instituted in 2002, and currently providing general support for cancer patients receiving chemotherapy not only for terminally ill patients. In future, we would start a regional palliative care program, including community palliative care team, to provide appropriate palliative care for all cancer population.     

Prevalence of neuropathic pain in terminally ill patients with cancer admitted to a general ward: a prospective observational study

ObjectivesTo determine the prevalence of neuropathic pain among terminally ill patients with cancer admitted to a general ward, using the International Association for the Study of Pain algorithm.MethodsThis prospective observational study was conducted at a tertiary care center. We enrolled terminally ill patients with cancer admitted to the general ward between September 2018 and September 2019. On the day of consultation with our palliative care team, pain management clinicians examined and diagnosed neuropathic pain using the International Association for the Study of Pain diagnostic criteria.ResultsA total of 108 patients were enrolled during the study period. The median age was 69 years (interquartile range [IQR] 58.3–76.8 years), 72 patients (66.7%) were men, and the median survival time was 33 days (IQR 14.3–62 days). Of the 108 patients, 33 (30.6%) had neuropathic pain. Patients with neuropathic pain had more severe pain than those without neuropathic pain.ConclusionsThe prevalence of neuropathic pain in terminally ill patients with cancer admitted to a Japanese general ward was 30.6%. Further studies are warranted to elucidate whether the accurate diagnosis of neuropathic pain can improve pain control and/or patient conditions.     

Influenza vaccination for terminally ill cancer patients receiving palliative care: a preliminary report

ContextCancer patients have impaired humoral and cellular immunity, and are more susceptible to infections; their immunological response is expected to be less effective than that of healthy people.ObjectivesTo assess the immune response to influenza vaccine in terminally ill cancer patients in a home palliative care unit.MethodsDuring the fall of 2000–2001, 2005–2006, and 2006–2007, terminally ill cancer patients treated by our home palliative care unit were vaccinated against influenza with Vaxigrip^®. Blood samples were taken before and four weeks after vaccination. Influenza immunological response parameters accepted in the literature were calculated.ResultsEighteen terminal cancer patients were vaccinated against influenza strains predicted for that year; 13 completed the study. The other five patients died within less than a month from the time of vaccination. The serum protection rate increased from 15.4% before to 61.5% after vaccination, and the serum response rate was 53.8% for all the three strains of vaccination. Mean-fold increase was 24.9 for influenza A-H1N1, 15.4 for influenza A-H3N2, and 2.8 for influenza B. Geometric mean titer was increased for influenza A-H3N2 from 8.3 before vaccination to 159.4 after vaccination; for influenza A-H1N1 from 5.2 to 124.3, and for influenza B from 5.7 to 44.6.ConclusionThe results indicate that influenza vaccination is probably effective and can be offered to terminally ill cancer patients with a life expectancy of about three months in a home care palliative care unit.     

Accurate Prognostic Awareness Facilitates,Whereas Better Quality of Life and More Anxiety Symptoms Hinder End-of-Life Care Discussions: A Longitudinal Survey Study in Terminally Ill Cancer Patients' Last Six Months of Life

Context

Terminally ill cancer patients do not engage in end-of-life (EOL) care discussions or do so only when death is imminent, despite guidelines for EOL care discussions early in their disease trajectory. Most studies on patient-reported EOL care discussions are cross sectional without exploring the evolution of EOL care discussions as death approaches. Cross-sectional studies cannot determine the direction of association between EOL care discussions and patients' prognostic awareness, psychological well-being, and quality of life (QOL).

Palliative care in Papua New Guinea: report of the International Association of Hospice and Palliative Care Traveling Fellowship

In June and July 2001, Dr. Nell Muirden traveled from Melbourne, Australia to Port Moresby General Hospital and Angau Memorial Hospital located in Lae, in Papua New Guinea. This visit was supported through an International Association for Hospice and Palliative Care Traveling Fellowship. Dr. Muirden's visit greatly increased awareness about cancer pain and the importance of palliative care and pain relief in cancer and other terminally ill patients. She developed a discussion paper relating to the drugs needed for palliative care and the changes that should be made. The Pharmaceutical Advisory Committee subsequently adopted these recommendations, which will lead to a better range of medications to treat pain becoming available throughout Papua New Guinea.     

Physical exercise and therapy in terminally ill cancer patients: a retrospective feasibility analysis

Purpose

Physical exercise (PE) and/or therapy (PT) shows beneficial effects in advanced cancer patients and is increasingly implemented in hospice and palliative care, although systematic data are rare. This retrospective study systematically evaluated the feasibility of PE/PT in terminally ill cancer patients and of different modalities in correspondence to socio-demographic and disease- and care-related aspects.

Methods

All consecutive terminally ill cancer patients treated in a palliative care inpatient ward during a 3.5-year period were included. The modalities were chosen according to the therapists' and patients' appraisal of current performance status and symptoms.

Results

PE/PT were offered to 572 terminally ill cancer patients, whereof 528 patients (92 %) were able to perform at least one PE/PT unit (average 4.2 units/patient). The most frequently feasible modalities were physical exercises in 50 %, relaxation therapy in 22 %, breathing training in 10 %, and positioning and lymph edema treatment in 6 % each. Physical exercise and positioning treatment were performed significantly more often in older patients (p?=?0.009 and p?=?0.022, respectively), while relaxation (p?=?0.05) and lymph edema treatment (p?=?0.001) were used more frequently in younger. Breathing training was most frequently performed in head and neck cancer (p?=?0.002) and lung cancer (p?=?0.026), positioning treatment in brain tumor patients (p?=?0.021), and lymph edema treatment in sarcoma patients (p?=?0.012).

Conclusions

PE/PT were feasible in >90 % of terminally ill cancer patients to whom PE/PT had been offered. Physical exercises, relaxation therapy, and breathing training were the most frequently applicable methods. Prospective trials are needed to evaluate the efficacy of specific PE/PT programs in terminally ill cancer patients.     

A one-day,hospital-wide survey of dying inpatients

We attempted to identify and briefly follow until discharge all terminally ill patients in a large general hospital. On 1 day, nurse case managers reviewed all hospitalized patients and identified those whom they believed were likely to die in the next 6 months (Category A) or whom might be considered terminally ill but with a longer prognosis (Category B). Twelve percent of all adult and pediatric medical-surgical inpatients were detected, equally divided between the two categories. In Category A, 63% were on the medical service, 7% were receiving intensive care, 54% had cancer, and 46% had do-not-resuscitate (DNR) orders. In Category B, 40% were on the medical service, 10% were in intensive care, 52% had cancer, and only 5% had DNR orders. Case managers expected 6% of identified patients to die in the hospital. After 1 month, at least 19% of identified patients had died (2.3% of the medical-surgical inpatient census on the day of the survey). The average length of stay in both categories, excluding outliers, was 24 days or approximately 4 times the average length of stay for the hospital. Patients who actually died in the hospital had an average length of stay of 62 days. This study presents a simple method for estimating the number of dying patients in a hospital--the target population for a palliative care program--and for determining their location, principal diagnosis, length of stay, and disposition. We present information indicating that the survey underestimates the number of dying hospitalized patients. We discuss possible policy implication of this study, primarily that general hospitals should consider developing specialized palliative care services for this substantial group of inpatients.     

The Role of a Symptom Assessment Tool in Shaping Patient-Physician Communication in Palliative Care

ContextPatients with cancer experience many symptoms that disrupt quality of life, and symptom communication and management can be challenging. The Edmonton Symptom Assessment System (ESAS) was developed to standardize assessment and documentation of symptoms, yet research is needed to understand patients' and caregivers' experiences using the tool and its ability to impact patient-provider aligned care.ObjectivesThe objective of this study was to understand how the ESAS shapes communication between patients and providers by exploring patients' and caregivers' experiences using the ESAS and assessing the level of agreement in symptom assessment between patients and palliative care physicians.MethodsThis study used a mixed-methods design. Thirty-one semistructured interviews were conducted and audio-recorded with patients (n = 18) and caregivers (n = 13). Data were analyzed following a social constructionist grounded theory approach. Patient and provider ESAS scores were obtained by medical chart review. Intraclass correlation coefficients were used to assess the level of agreement between patient-completed ESAS scores and provider-completed ESAS scores.ResultsParticipants reported that the ESAS was a beneficial tool in establishing priorities for symptom control and guiding the appointment with the palliative care physician, despite challenges in completing the ESAS. Filling out the ESAS can also help patients more clearly identify their priorities before meeting with their physician. There was a good to excellent level of agreement between patients and physicians in all symptoms analyzed.ConclusionThe ESAS is beneficial in enhancing symptom communication when used as a guide to identify and understand patients' main concerns.     

Clinical estimation of survival and impact of other prognostic factors on terminally ill cancer patients in Oman

A prospective study was carried out in the only tertiary oncology department in Oman to analyse the pattern of various prognostic factors in terminally ill cancer patients and their impact on these patients. Between September 1999 and February 2001, terminally ill cancer patients with solid tumours who fulfilled the eligibility criteria were included. All of them were coded Do Not Resuscitate (DNR). Clinical estimation of survival as well as recording of different symptoms and signs was carried out for each patient. Survival was calculated from the date of the DNR coding to the date of death. A total of 162 patients were included. Mean survival time was 41.5 days (median 10 days). The gastrointestinal tract (GIT) was the most common site of malignant disease, followed by the breast. Univariate analysis of evaluable patients showed that performance status (PS), dry mouth, presence of delirium, anorexia, peripheral oedema, absence of bone metastasis, low lymphocyte count and low albumin level had significant effects on survival. Multiple regression analysis showed that PS and oedema were the only independent predictors of survival. Clinical prediction of survival was correlated with observed survival. Patient's PS, presence of peripheral oedema and clinical estimate of survival are good predictors of survival in terminally ill cancer patients.