Symptom Control in Palliative Care—Part I: Oncology as a Paradigmatic Example

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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Lipman A, Jackson K, Tyler L, editors. Evidence based symptom control in palliative care: systematic reviews and validated clinical practice guidelines for 15 common problems in patients with life limiting disease. New York: Pharmaceutical Products Press, 2000.

Evidence-Based Medicine ◽

10.1136/ebm.8.5.136 ◽

2003 ◽

Vol 8 (5) ◽

pp. 136-136

Author(s):

K. Stewart

Keyword(s):

New York ◽

Palliative Care ◽

Clinical Practice ◽

Systematic Reviews ◽

Clinical Practice Guidelines ◽

Practice Guidelines ◽

Symptom Control ◽

Pharmaceutical Products ◽

Evidence Based ◽

Common Problems

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Beyond symptom control: Research in psychosocial and existential issues in palliative care

Palliative & Supportive Care ◽

10.1017/s1478951504040015 ◽

2004 ◽

Vol 2 (1) ◽

pp. 1-2 ◽

Cited By ~ 4

Author(s):

WILLIAM BREITBART

Keyword(s):

Palliative Care ◽

European Association ◽

Symptom Control ◽

Official Language ◽

Research Committee ◽

Care Research ◽

The Third ◽

Control Research ◽

Existential Issues ◽

Important Milestone

Stresa, a small town on the shores of the Lago Maggiore, about one hour north of Milan, Italy, was the site of the Third Research Forum of the European Association for Palliative Care (EAPC). From June 3 through 6, 2004, researchers from all across Europe, as well as investigators from North America, Australia, Japan, and Israel, gathered to review the state of palliative care research and set an agenda for the future. The setting was bucolic and tranquil; the official language was English; the accents were diverse; the accommodations were grand; the ambiance was intimate and insouciant; the dinners were elegant; the dress was stylish; the organization was impeccable; and the scholarship was of the highest level. All this, perhaps, was to be expected of an EAPC event, hosted by an Executive Scientific Committee and Research Committee headed by Franco De Conno of the Instituto di Tumori of Milano, Italy, and his colleagues. What was unexpected, however, was the prominence of research on psychosocial, existential, and spiritual aspects of palliative care at this critically important, international, palliative care research forum. Clearly, 2004 marks an important milestone for the entry of research in psychosocial and existential issues into the mainstream of academic palliative care. Palliative and Supportive Care, having just successfully completed its inaugural year of publication in 2003, is now extraordinarily and uniquely well placed to be the preeminent international palliative care journal for research in the psychosocial, existential, and spiritual aspects of palliative care.

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Impact of a half-day multidisciplinary symptom control and palliative care outpatient clinic in a comprehensive cancer center on recommendations, symptom intensity, and patient satisfaction: A retrospective descriptive study

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2003.10.011 ◽

2004 ◽

Vol 27 (6) ◽

pp. 481-491 ◽

Cited By ~ 106

Author(s):

Florian Strasser ◽

Catherine Sweeney ◽

Jie Willey ◽

Susanne Benisch-Tolley ◽

J.Lynn Palmer ◽

...

Keyword(s):

Palliative Care ◽

Patient Satisfaction ◽

Outpatient Clinic ◽

Symptom Control ◽

Descriptive Study ◽

Comprehensive Cancer Center ◽

Cancer Center ◽

Symptom Intensity

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Phase II Study of an Outpatient Palliative Care Intervention in Patients With Metastatic Cancer

Journal of Clinical Oncology ◽

10.1200/jco.2008.17.7568 ◽

2009 ◽

Vol 27 (2) ◽

pp. 206-213 ◽

Cited By ~ 156

Author(s):

Matthew Follwell ◽

Debika Burman ◽

Lisa W. Le ◽

Kristina Wakimoto ◽

Dori Seccareccia ◽

...

Keyword(s):

Palliative Care ◽

Patient Satisfaction ◽

Phase Ii ◽

Phase Ii Study ◽

Metastatic Cancer ◽

Symptom Control ◽

Family Satisfaction ◽

Care Clinic ◽

Edmonton Symptom Assessment Scale ◽

The Mean

Purpose Although there is increasing advocacy for timely symptom control in patients with cancer, few studies have assessed outpatient palliative care clinics. This study assessed prospectively the efficacy of an Oncology Palliative Care Clinic (OPCC) in improving patient symptom distress and satisfaction. Patients and Methods Eligible patients were new referrals to an OPCC, had metastatic cancer, were at least 18 years old, and were well enough and able to speak and read English sufficiently to provide informed consent and complete questionnaires. Patients received a consultation by a palliative care team. The primary end points of symptom control and patient satisfaction were assessed using the Edmonton Symptom Assessment Scale (ESAS) and patient-adapted Family Satisfaction with Advanced Cancer Care (FAMCARE) scale at baseline, 1 week, and 1 month. Initial and follow-up scores were compared using paired t tests. Results Of 150 patients enrolled, 123 completed 1-week assessments, and 88 completed 4-week assessments. At baseline, the mean ESAS Distress Score (EDS) was 39.5. The mean improvement in EDS was 8.8 points (P < .0001) at 1 week and 7.0 points (P < .0001) at 1 month. Statistically significant improvements were observed for pain, fatigue, nausea, depression, anxiety, drowsiness, appetite, dyspnea, insomnia, and constipation at 1 week (all P ≤ .005) and 1 month (all P ≤ .05). The mean improvement in FAMCARE score was 6.1 points (P < .0001) at 1 week and 5.0 points (P < .0001) at 1 month. Conclusion This phase II study demonstrates efficacy of an OPCC for improvement of symptom control and patient satisfaction with care. Randomized controlled trials are indicated to further evaluate the effectiveness of specialized outpatient palliative care.

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Experience of symptom control, anxiety and associating factors in a palliative care unit evaluated with Support Team Assessment Schedule Japanese version

Scientific Reports ◽

10.1038/s41598-021-97143-4 ◽

2021 ◽

Vol 11 (1) ◽

Author(s):

Tetsuya Ito ◽

Emi Tomizawa ◽

Yuki Yano ◽

Kiyozumi Takei ◽

Naoko Takahashi ◽

...

Keyword(s):

Palliative Care ◽

Symptom Control ◽

Laboratory Data ◽

Japanese Version ◽

Palliative Care Unit ◽

Current Status ◽

Physical Factors ◽

Patient Anxiety ◽

Team Assessment ◽

Support Team

AbstractVarious physical and psychosocial difficulties including anxiety affect cancer patients. Patient surroundings also have psychological effects on caregiving. Assessing the current status of palliative care intervention, specifically examining anxiety and its associated factors, is important to improve palliative care unit (PCU) patient quality of life (QOL). This study retrospectively assessed 199 patients admitted to a PCU during August 2018–June 2019. Data for symptom control, anxiety level, disease insight, and communication level obtained using Support Team Assessment Schedule Japanese version (STAS-J) were evaluated on admission and after 2 weeks. Palliative Prognostic Index (PPI) and laboratory data were collected at admission. Patient anxiety was significantly severer and more frequent in groups with severer functional impairment (p = 0.003) and those requiring symptom control (p = 0.006). Nevertheless, no relation was found between dyspnea and anxiety (p = 0.135). Patients with edema more frequently experienced anxiety (p = 0.068). Patient survival was significantly shorter when family anxiety was higher after 2 weeks (p = 0.021). Symptoms, edema, and disabilities in daily living correlate with patient anxiety. Dyspnea is associated with anxiety, but its emergence might be attributable mainly to physical factors in this population. Family members might sensitize changes reflecting worsened general conditions earlier than the patients.

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Symptom control in paediatric palliative care

Paediatrics and Child Health ◽

10.1016/j.paed.2015.10.004 ◽

2016 ◽

Vol 26 (2) ◽

pp. 87-88 ◽

Cited By ~ 2

Author(s):

Satbir Singh Jassal

Keyword(s):

Palliative Care ◽

Symptom Control ◽

Paediatric Palliative Care

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Implementing a patient-centred outcome measure in daily routine in a specialist palliative care inpatient hospital unit: An observational study

Palliative Medicine ◽

10.1177/0269216316655349 ◽

2016 ◽

Vol 31 (3) ◽

pp. 275-282 ◽

Cited By ~ 5

Author(s):

Alze Pereira dos Santos Tavares ◽

Carolina Paparelli ◽

Carolina Sassaki Kishimoto ◽

Silvia Avo Cortizo ◽

Karen Ebina ◽

...

Keyword(s):

Palliative Care ◽

Quality Of Care ◽

Missing Data ◽

Outcome Measure ◽

Symptom Control ◽

Daily Practice ◽

Daily Routine ◽

Palliative Care Outcome Scale ◽

Care Outcome

Background: Gathering clinical evidence data on patients’ palliative care needs is paramount to identify changes in outcomes over time and maintaining on-going quality improvement. Implementation of patient-centred outcome measures has been widely recommended. The routine use of these instruments in daily practice is challenging and not widespread. Aim: To implement a patient-centred outcome measure in daily practice and fulfil one quality indicator: improve pain during the 72 h after admission, in at least 75% of patients. Design: An observational prospective study. The Palliative care Outcome Scale was used at admission (T0), third day (T1) and weekly. Setting/participants: Hospital palliative care unit with 17 individual rooms. All patients admitted to the unit were included in the study. Results: Preliminary results ( N = 84) revealed inconsistent and missing data (14%). Symptoms were sub-optimally controlled by T1. Processes changed, and only a team member could apply Palliative care Outcome Scale. Doctors were encouraged to grasp the meaning of Palliative care Outcome Scale results for each patient. The post-pilot included 317 patients. No missing data occurred. There was an improvement in most items between T0 and T1: ‘pain’ and ‘other symptoms’ presented statistical significant differences ( p < 0.05). Conclusion: Implementing a patient-centred outcome measure in a hospital palliative care service is feasible and improves quality of care. Controlling high pain at T0 improved (>80%) by T1. Results became more consistent and symptom control was improved overall. Patients are evaluated based on holistic domains by an interdisciplinary team and we have added a much needed measure to help guide improvement of the quality of care provided.

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Perinatal palliative care

Oxford Textbook of Palliative Care for Children ◽

10.1093/med/9780198821311.003.0029 ◽

2021 ◽

pp. 325-331

Author(s):

Áine Ni Laoire ◽

Daniel Nuzum ◽

Maeve O’Reilly ◽

Marie Twomey ◽

Keelin O’Donoghue ◽

...

Keyword(s):

Palliative Care ◽

Symptom Control ◽

Management Strategies ◽

Models Of Care ◽

Multidisciplinary Teams ◽

Care Approach ◽

Perinatal Palliative Care ◽

Limiting Condition ◽

Multidisciplinary Model ◽

Bereavement Care

Perinatal palliative care (PNPC) is a holistic multidisciplinary model of care for both baby and family in the event of a perinatal diagnosis of a life-limiting condition. It aims to provide optimal symptom control and end-of-life care to the baby as well as specialized support to families from diagnosis through to birth, death, and bereavement. This chapter aims to address the challenging clinical, ethical, and practical issues specific to perinatal palliative care. It describes antenatal life-limiting diagnoses, the role of anticipatory bereavement care, a palliative care approach to pregnancy, and outlines the complex planning and models of care required to optimally provide for the baby, mother, and family throughout. This chapter ultimately aims to provide management strategies to guide multidisciplinary teams (MDT) to deliver high-quality PNPC to the family as a whole.

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Pain treatment and prevention in pediatric palliative care

Oxford Textbook of Pediatric Pain ◽

10.1093/med/9780198818762.003.0029 ◽

2021 ◽

pp. 292-311

Author(s):

Stefan J. Friedrichsdorf

Keyword(s):

Chronic Pain ◽

Palliative Care ◽

Visceral Pain ◽

Pain Treatment ◽

Symptom Control ◽

Pediatric Palliative Care ◽

Serious Illness ◽

Psychological Therapies ◽

Total Pain ◽

The Usa

Annually, at least 21 million children could benefit from pediatric palliative care (PPC) and 8 million would need specialized PPC services. In the USA alone, more than 40,000 children aged 0–19 years die annually; 55% of them are infants younger than 1 year of age. Pain is common, under-recognized, and under-treated, especially in children with progressive neurodegenerative and chromosomal conditions with central nervous system impairment. Unrelieved pain is also common in children with advanced serious illness during the end-of-life period, and, when treated, the therapy is commonly ineffective. Treating pain in children with serious illness is not profoundly different than advanced pain management for children with complex acute conditions or diseases such as major trauma, burns, cancer, or those with sickle cell disease in vaso-occlusive crisis. It is important to appreciate that children with serious illness are more likely to simultaneously suffer from acute pain, neuropathic pain, visceral pain, total pain, and chronic pain. As such, multimodal analgesic (i.e., multiple agents, interventions, rehabilitation, psychological modalities, and integrative (“nonpharmacologic,” e.g., behavioral, physiological, and psychological) therapies that act synergistically for more effective pediatric pain and symptom control with fewer side effects than a single analgesic or modality must be employed. Opioids, such as morphine, fentanyl, hydromorphone, oxycodone, and methadone, remain the mainstay medications to effectively treat pain in children with serious illness. However, medications alone are often insufficient for optimal pain control. In fact, the paradigm shift away from “medications only” toward offering “multimodal analgesia” to children with serious illness experiencing pain, including addressing chronic pain/primary pain disorders and total pain has become a “game changer” in advancing PPC to ensure that patients can live as long as possible, as well as possible.

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