Palliative care referral practices and perceptions: The divide between metropolitan and non-metropolitan general practitioners

AbstractObjective:Late or non-referral of patients to specialist palliative care (SPC) services may affect patients' and their carers' quality of care. General practitioners (GPs) are key professionals in linking people with SPC. The aim of this article is to assess GPs' perceptions and SPC referrals for their patients with advanced cancer and differences between metropolitan (M GPs) and non-metropolitan GPs (NM GPs).Method:Self-report survey mailed to a stratified random sample of 1,680 Australian GPs was used.Results:Thirty-one percent (469) of eligible GPs returned surveys. More M GPs than NM GPs reported referring >60% of their patients for SPC (p = 0.014); and that a more comprehensive range of SPC services was available. The most frequently reported referral prompts were: presence of terminal illness (M GPs, 71%, NM GPs, 66%, ns (not significant)); future need for symptom control (69% vs. 59%, ns) and uncontrolled physical symptoms (63% vs. 54%, ns). Reasons for not referring were: doctor's ability to manage symptoms (62% vs. 68%, ns) and the absence of symptoms (29% vs. 18%, p = 0.025). Higher referral was associated with: having a palliative care physician or consultative service available; agreeing that all patients with advanced cancer should be referred, and agreeing that with SPC, the needs of the family are better met.Significance of results:Referrals for SPC were primarily disease-related rather than for psychological and emotional concerns. Measures are needed to encourage referrals based upon psychosocial needs as well as for physical concerns, and to support GPs caring for people with advanced cancer in areas with fewer comprehensive SPC services.

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Correlates of disrupted sleep–wake variables in patients with advanced cancer

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2018-001505 ◽

2018 ◽

Vol 10 (1) ◽

pp. 55-63 ◽

Cited By ~ 1

Author(s):

Marie Solange Bernatchez ◽

Josée Savard ◽

Michèle Aubin ◽

Hans Ivers

Keyword(s):

Palliative Care ◽

Environmental Factors ◽

Advanced Cancer ◽

Light Exposure ◽

Eastern Cooperative Oncology Group ◽

Physical Symptoms ◽

Community Dwelling ◽

Self Report ◽

Sleep Diary ◽

Patients With Cancer

ObjectivesHigh rates of sleep difficulties have been found in patients with advanced cancer. However, not much is known about factors that are associated with sleep impairments in this population and that could constitute their potential risk factors or consequences. This study conducted in patients with cancer receiving palliative care aimed to evaluate the relationships of subjective (sleep diary; Insomnia Severity Index, ISI) and objective (actigraphy) sleep–wake variables with several physical and psychological symptoms, maladaptive sleep behaviours, erroneous beliefs about sleep, quality of life, time to death and environmental factors.MethodsThe sample was composed of 57 community-dwelling patients with cancer receiving palliative care and with an Eastern Cooperative Oncology Group Scale score of 2 or 3. Actigraphic, light and sound recording and a daily sleep and pain diary were completed for seven consecutive days. A battery of self-report scales was also administered.ResultsGreater disruptions of subjective and objective sleep–wake variables were more consistently associated with worse physical symptoms than with psychological variables. Disrupted objective sleep–wake parameters were also associated with a greater frequency of maladaptive sleep behaviours. Finally, a greater nocturnal noise in the bedroom was correlated with more impairments in subjective and objective sleep–wake variables while a lower 24-hour light exposure was associated with more disruption of subjectively assessed sleep only.ConclusionsAlthough longitudinal studies are needed to establish the etiology of sleep–wake difficulties in patients with advanced cancer, our findings suggest that physical symptoms, maladaptive sleep behaviours and environmental factors can contribute to their development or their persistence and need to be adequately addressed.

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Physician-Assisted Suicide and Euthanasia

Journal of Palliative Care ◽

10.1177/0825859718777325 ◽

2018 ◽

Vol 33 (4) ◽

pp. 197-203 ◽

Cited By ~ 14

Author(s):

Charles L. Sprung ◽

Margaret A. Somerville ◽

Lukas Radbruch ◽

Nathalie Steiner Collet ◽

Gunnar Duttge ◽

...

Keyword(s):

Palliative Care ◽

Terminal Illness ◽

Assisted Suicide ◽

Symptom Control ◽

Physical Symptoms ◽

Physician Assisted Suicide ◽

Adequate Treatment ◽

Means And Ends ◽

Patient Consent ◽

Pain And Suffering

Medical professional societies have traditionally opposed physician-assisted suicide and euthanasia (PAS-E), but this opposition may be shifting. We present 5 reasons why physicians shouldn’t be involved in PAS-E. 1. Slippery slopes: There is evidence that safeguards in the Netherlands and Belgium are ineffective and violated, including administering lethal drugs without patient consent, absence of terminal illness, untreated psychiatric diagnoses, and nonreporting; 2. Lack of self-determination: Psychological and social motives characterize requests for PAS-E more than physical symptoms or rational choices; many requests disappear with improved symptom control and psychological support; 3. Inadequate palliative care: Better palliative care makes most patients physically comfortable. Many individuals requesting PAS-E don’t want to die but to escape their suffering. Adequate treatment for depression and pain decreases the desire for death; 4. Medical professionalism: PAS-E transgresses the inviolable rule that physicians heal and palliate suffering but never intentionally inflict death; 5. Differences between means and ends: Proeuthanasia advocates look to the ends (the patient’s death) and say the ends justify the means; opponents disagree and believe that killing patients to relieve suffering is different from allowing natural death and is not acceptable. Conclusions: Physicians have a duty to eliminate pain and suffering, not the person with the pain and suffering. Solutions for suffering lie in improving palliative care and social conditions and addressing the reasons for PAS-E requests. They should not include changing medical practice to allow PAS-E.

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Advance care planning and palliative care in ACHD: the healthcare providers’ perspective

Cardiology in the Young ◽

10.1017/s1047951120000219 ◽

2020 ◽

Vol 30 (3) ◽

pp. 402-408

Author(s):

Jill M. Steiner ◽

Erwin N. Oechslin ◽

Gruschen Veldtman ◽

Craig S. Broberg ◽

Karen Stout ◽

...

Keyword(s):

Palliative Care ◽

Advance Directives ◽

Advance Care Planning ◽

Healthcare Providers ◽

Cross Sectional Study ◽

Physical Symptoms ◽

Care Planning ◽

Psychosocial Needs ◽

Cross Sectional ◽

Advance Care

ABSTRACTBackground:Advance care planning and palliative care are gaining recognition as critical care components for adults with CHD, yet these often do not occur. Study objectives were to evaluate ACHD providers’ 1) comfort managing patients’ physical symptoms and psychosocial needs and 2) perspectives on the decision/timing of advance care planning initiation and palliative care referral.Methods:Cross-sectional study of ACHD providers. Six hypothetical patients were described in case format, followed by questions regarding provider comfort managing symptoms, initiating advance care planning, and palliative care referral.Results:Fifty providers (72% physicians) completed surveys. Participants reported low levels of personal palliative care knowledge, without variation by gender, years in practice, or prior palliative care training. Providers appeared more comfortable managing physical symptoms and discussing prognosis than addressing psychosocial needs. Providers recognised advance directives as important, although the percentage who would initiate advance care planning ranged from 18 to 67% and referral to palliative care from 14 to 32%. Barriers and facilitators to discussing advance care planning with patients were identified. Over 20% indicated that advance care planning and end-of-life discussions are best initiated with the development of at least one life-threatening complication/hospitalisation.Conclusions:Providers noted high value in advance directives yet were themselves less likely to initiate advance care planning or refer to palliative care. This raises the critical questions of when, how, and by whom discussion of these important matters should be initiated and how best to support ACHD providers in these endeavours.

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Severe symptoms and very low quality-of-life among outpatients newly diagnosed with advanced cancer: data from a multicenter cohort study

Supportive Care in Cancer ◽

10.1007/s00520-020-05388-y ◽

2020 ◽

Vol 28 (11) ◽

pp. 5547-5555

Author(s):

Waldemar Siemens ◽

Stefan S. Schönsteiner ◽

Claudia Lorena Orellana-Rios ◽

Ulrike Schaekel ◽

Jens Kessler ◽

...

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Cohort Study ◽

Advanced Cancer ◽

Physical Symptoms ◽

Newly Diagnosed ◽

Multicenter Cohort Study ◽

European Organization ◽

Multicenter Cohort

Abstract Purpose The aim of this study was to identify symptoms of severe intensity or very low scores for quality of life (QoL) domains in newly diagnosed outpatients with advanced cancer. Methods This multicenter cohort study from a state-wide palliative care network included adult outpatients with advanced cancer diagnosed within the preceding 8 weeks from four comprehensive cancer centers (DRKS00006162, registered on 19 May 2014). We used the Palliative Outcome Scale (POS), Hospital Anxiety and Depression Scale, and European Organization for Research and Treatment of Cancer QoL Questionnaire-C30. For each questionnaire, cut-off scores defined symptoms and QoL domains that were considered “severe” or “very low.” Results Of 3155 patients screened, 481/592 (81.3%) were analyzed (mean age 62.4; women n = 245, 50.9%). We identified 324/481 (67.4%) patients experiencing at least one severe symptom or a very low QoL domain (median 2; range 0 to 16). Role functioning (n = 180, 37.4%), fatigue (n = 162, 33.7%), and social functioning (n = 126, 26.2%) were most commonly affected. QoL was very low in 89 patients (18.5%). Women experienced more anxiety symptoms, fatigue, and had lower POS scores. Patients often mentioned physical symptoms and fears of adverse events resulting from disease-modifying therapies (e.g., chemotherapy) as most relevant problems. Conclusions Already within the first 8 weeks after diagnosis, the majority of patients reported at least one severe symptom or a very low QoL domain. Gender differences were evident. The findings illustrate the value of early routine assessment of patient burden and the development of multi-professional and interdisciplinary palliative care.

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Understanding and Addressing the Role of Coping in Palliative Care for Patients With Advanced Cancer

Journal of Clinical Oncology ◽

10.1200/jco.19.00013 ◽

2020 ◽

Vol 38 (9) ◽

pp. 915-925 ◽

Cited By ~ 6

Author(s):

Joseph A. Greer ◽

Allison J. Applebaum ◽

Juliet C. Jacobsen ◽

Jennifer S. Temel ◽

Vicki A. Jackson

Keyword(s):

Palliative Care ◽

Coping Strategies ◽

Advanced Cancer ◽

Physical Symptoms ◽

Early Palliative Care ◽

Beneficial Effects ◽

Symptoms Of Depression ◽

Home Based ◽

Oncology Care

Advanced cancer, with its considerable physical symptoms and psychosocial burdens, represents an existential threat and major stressor to patients and their caregivers. In response to such stress, patients and their caregivers use a variety of strategies to manage the disease and related symptoms, such as problem-focused, emotion-focused, meaning-focused, and spiritual/religious coping. The use of such coping strategies is associated with multiple outcomes, including quality of life, symptoms of depression and anxiety, illness understanding, and end-of-life care. Accumulating data demonstrate that early palliative care, integrated with oncology care, not only improves these key outcomes but also enhances coping in patients with advanced cancer. In addition, trials of home-based palliative care interventions have shown promise for improving the ways that patients and family caregivers cope together and manage problems as a dyad. In this article, we describe the nature and correlates of coping in this population, highlight the role of palliative care to promote effective coping strategies in patients and caregivers, and review evidence supporting the beneficial effects of palliative care on patient coping as well as the mechanisms by which improved coping is associated with better outcomes. We conclude with a discussion of the limitations of the state of science, future directions, and best practices on the basis of available evidence.

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Personalized symptom goals in symptom assessment: A prospective multicenter study.

Journal of Clinical Oncology ◽

10.1200/jco.2015.33.29_suppl.190 ◽

2015 ◽

Vol 33 (29_suppl) ◽

pp. 190-190

Author(s):

David Hui ◽

Omar M. Shamieh ◽

Carlos Eduardo Paiva ◽

Pedro Emilio Perez-Cruz ◽

Mary Ann Muckaden ◽

...

Keyword(s):

Palliative Care ◽

Logistic Regression ◽

Advanced Cancer ◽

Symptom Assessment ◽

Well Being ◽

Physical Symptoms ◽

Multivariate Logistic Regression ◽

Factors Associated ◽

Symptom Intensity ◽

Symptom Response

190 Background: PSG is a novel measure to assess treatment response in symptom management. In this multicenter prospective longitudinal observational study, we examined the PSG for 10 common symptoms in patients with advanced cancer, and identified the factors associated with PSG intensity and PSG response. Methods: We enrolled patients with advanced cancer seen at 5 outpatient palliative care clinics (USA, Jordan, Brazil, Chile and India). We assessed the intensity of 10 symptoms using the Edmonton Symptom Assessment Scale at first consultation visit and then a second visit 14-34 days later. We also assessed the PSG by asking patients “At what level would you feel comfortable with this symptom?” using the same 0-10 numeric rating scale for each symptom. Response was defined as symptom intensity ≤ PSG. We used multivariate logistic regression to determine factors associated with PSG intensity and PSG response. Results: 728 patients were enrolled from 5 palliative care clinics. The average age was 57 (range 19-85), 361 (50%) were female, and 29 (31%) were White. The medianPSG was 1/10 for nausea, 2/10 for depression, anxiety, drowsiness, well-being, dyspnea and sleep, and 3/10 for pain, fatigue, and appetite. In multivariate logistic regression, Asian ethnicity (odds ratio [OR] 2.4-8.2, P < 0.001), CAGE positivity (OR 1.7-2.3, P < 0.05) and higher baseline symptom intensity (ORs 1.08-1.15 per point, P < 0.03) were associated with PSG ≥ 2 for essentially all symptoms. At visit 2, 34%-73% of patients had a PSG response, which represents a significant improvement compared to the first visit (P < 0.05 except for depression, drowsiness and well-being). PSG response was associated with baseline PSG intensity (ORs 1.3-1.5 per point, P < 0.001) and ethnicity (P < 0.02) for physical symptoms, and male sex (ORs 1.45-1.65, P < 0.02) for psychological symptoms. Conclusions: PSG was 3 or lower for a majority of patients, and varied according to ethnicity, alcoholism and symptom intensity. PSG response allows clinicians and researchers to tailor treatment goals, while adjusting for individual differences in scale interpretation and factors associated with symptom response.

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Phase II Trial of Symptom Screening With Targeted Early Palliative Care for Patients With Advanced Cancer

Journal of the National Comprehensive Cancer Network ◽

10.6004/jnccn.2020.7803 ◽

2021 ◽

pp. 1-10

Author(s):

Camilla Zimmermann ◽

Ashley Pope ◽

Breffni Hannon ◽

Monika K. Krzyzanowska ◽

Gary Rodin ◽

...

Keyword(s):

Palliative Care ◽

Advanced Cancer ◽

Patient Reported Outcomes ◽

Phase Ii Trial ◽

Symptom Control ◽

Satisfaction With Care ◽

Early Palliative Care ◽

Symptom Screening ◽

Patient Reported ◽

Over Time

Background: Routine early palliative care (EPC) improves quality of life (QoL) for patients with advanced cancer, but it may not be necessary for all patients. We assessed the feasibility of Symptom screening with Targeted Early Palliative care (STEP) in a phase II trial. Methods: Patients with advanced cancer were recruited from medical oncology clinics. Symptoms were screened at each visit using the Edmonton Symptom Assessment System-revised (ESAS-r); moderate to severe scores (screen-positive) triggered an email to a palliative care nurse, who called the patient and offered EPC. Patient-reported outcomes of QoL, depression, symptom control, and satisfaction with care were measured at baseline and at 2, 4, and 6 months. The primary aim was to determine feasibility, according to predefined criteria. Secondary aims were to assess whether STEP identified patients with worse patient-reported outcomes and whether screen-positive patients who accepted and received EPC had better outcomes over time than those who did not receive EPC. Results: In total, 116 patients were enrolled, of which 89 (77%) completed screening for ≥70% of visits. Of the 70 screen-positive patients, 39 (56%) received EPC during the 6-month study and 4 (6%) received EPC after the study end. Measure completion was 76% at 2 months, 68% at 4 months, and 63% at 6 months. Among screen-negative patients, QoL, depression, and symptom control were substantially better than for screen-positive patients at baseline (all P<.0001) and remained stable over time. Among screen-positive patients, mood and symptom control improved over time for those who accepted and received EPC and worsened for those who did not receive EPC (P<.01 for trend over time), with no difference in QoL or satisfaction with care. Conclusions: STEP is feasible in ambulatory patients with advanced cancer and distinguishes between patients who remain stable without EPC and those who benefit from targeted EPC. Acceptance of the triggered EPC visit should be encouraged. ClinicalTrials.gov identifier: NCT04044040.

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QOLP-12. EMBEDDING OUTPATIENT PALLIATIVE CARE INTO NEURO-ONCOLOGY CLINIC – RESULTS FROM A ONE YEAR PILOT

Neuro-Oncology ◽

10.1093/neuonc/noaa215.737 ◽

2020 ◽

Vol 22 (Supplement_2) ◽

pp. ii177-ii177

Author(s):

Jennie Taylor ◽

Michael Rabow ◽

Susan Chang ◽

Nicholas Butowski ◽

Jennifer Clarke ◽

...

Keyword(s):

Palliative Care ◽

Social Worker ◽

Symptom Control ◽

Care Quality ◽

Satisfaction Survey ◽

Psychosocial Needs ◽

Missed Opportunities ◽

Early Palliative Care ◽

Pain Symptoms ◽

At Home

Abstract BACKGROUND Glioblastoma (GBM) patients fall within NCCN and ASCO guidelines for early palliative care (PC). However, data suggests they are less likely than systemic cancers to be referred to PC and often later in their illness. This results in potential missed opportunities, both for improving symptom control and earlier completion of important tasks, like advance care planning. Data on how to best incorporate comprehensive PC into routine neuro-oncology (NO) patient care is needed. METHODS We piloted a program embedding a PC physician into UCSF’s NO clinic one half-day per week. NO physicians were encouraged to refer GBM patients within 3 months of diagnosis and other patients with PC needs. PC visits were offered in-person, by telemedicine, or at home. PC physician and NO social worker made joint visits when possible; chaplaincy support was available by telemedicine. Data was collected using Palliative Care Quality Network (PCQN) database and patient satisfaction survey. RESULTS To date, 37 patients have been referred resulting in 103 visits (average 2.8 visits/person): 25% in-person; 68% telemedicine; 6% at home. PC physician and NO social worker met jointly with 46% visits. Median age was 58 years, 41% female, 81% non-Hispanic white, 84% GBM, median 9 months from diagnosis, and 73% receiving first line treatment. Interventions addressed across visits: 94% non-pain symptoms, 76% psychosocial needs; 71% pain; and 70% GOC. Results from satisfaction survey demonstrated 79% would recommend seeing PC embedded in NO to others and highest benefits were attention to practical considerations to staying healthy at home, discussing preferences for future medical care, and help with coping. CONCLUSIONS Embedding PC into NO clinics is a unique model for addressing symptoms and GOC early, is well received by patients and caregivers, and provides opportunities for collaboration and PC physicians to specialize in caring for needs of NO patients.

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Palliative care: A positive outcome for cancer patients?

Curationis ◽

10.4102/curationis.v31i2.978 ◽

2008 ◽

Vol 31 (2) ◽

Cited By ~ 4

Author(s):

JE Maree

Keyword(s):

Palliative Care ◽

Cancer Patients ◽

Advanced Cancer ◽

Private Hospital ◽

Positive Outcome ◽

Self Report ◽

World Health ◽

Treatment Modalities ◽

Public And Private ◽

Number Of Patients

The development of palliative care in terms of recognizing the needs of the dying, palliative care becoming a nursing and medical speciality, the involvement of the World Health Organization in palliative care and the continuous development of treatment modalities available to cancer patients creates the expectation that the outcomes for the patient should also be positively influenced. The purpose of the study was to determine the most common symptoms of advanced cancer patients treated in a public and private hospital in Tshwane, and whether advances in palliative care improved the outcomes for these patients by decreasing the prevalence of symptoms experienced. The design of the study was a quantitative survey. The population consisted of patients with advanced cancer receiving palliative treatment as out patients in radiation and medical oncology clinics in a public and private hospital the Tshwane Metropolitan area. The sampling method was convenient and the sample size was 148 participants (n=148). Data was gathered by means of an interview and self report. Data analysis was done by means of descriptive statistics. The results of the study indicated that a high number of patients still experience problems that could have been prevented. Pain was found to be the biggest problem for patients (76.4%) followed by weakness and fatigue (65.5%), nausea and vomiting (65.5%) and a dry mouth (46.6%). Thirst was reported by 41.2% of the sample. The study provides evidence that the development of palliative care did not have a positive outcome for patients by reducing the prevalence of symptoms experienced.

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Management of Hypoglycemia in Nondiabetic Palliative Care Patients: A Prognosis-Based Approach

Palliative Care Research and Treatment ◽

10.4137/pcrt.s38956 ◽

2016 ◽

Vol 10 ◽

pp. PCRT.S38956

Author(s):

Victor C. Kok ◽

Ping-Hsueh Lee

Keyword(s):

Palliative Care ◽

End Of Life ◽

Terminal Illness ◽

Physical Symptoms ◽

Autonomic Response ◽

Hypoglycemic Episode ◽

Family Expectations ◽

Existential Suffering ◽

Hypoglycemic Attack ◽

Patient’S Autonomy

Hypoglycemia due to underlying terminal illness in nondiabetic end-of-life patients receiving palliative care has not been fully studied. For example, we do not have adequate information on the frequency of spontaneous hypoglycemia in patients as occurs during the different stages of palliative care. Depending on the case-mix nature of the palliative care ward, at least 2% of palliative care patients may develop hypoglycemia near the end of life when the remaining life expectancy counts down in days. As many as 25%–60% of these patients will neither have autonomic response nor have neuroglycopenic symptoms during a hypoglycemic episode. Although it is not difficult to diagnose and confirm a true hypoglycemia when it is suspected clinically, an episode of hypoglycemic attack may go unnoticed in some patients in a hospice setting. Current trends in palliative care focus on providing treatments based on a prognosis-based framework, involving shared decision-making between the patient and caregivers, after considering the prognosis, professional recommendations, patient's autonomy, family expectations, and the current methods for treating the patient's physical symptoms and existential suffering. This paper provides professional care teams with both moral and literature support for providing care to nondiabetic patients presenting with hypoglycemia.

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