Role of Palliative Care in Adolescent and Young Adult Oncology

Adolescents and young adults (AYAs) with cancer are a heterogeneous group. Nevertheless, there are sufficient unifying characteristics to form a distinct clinical entity. Management of this special group requires a broad-based interdisciplinary clinical team, which should include palliative care (PC), psychology, social work, oncology, and nursing representatives. The function of PC is to provide impeccable pain and other symptom control and to coordinate care as the disease progresses. Features unique to AYAs with cancer include the psychosocial developmental phases, a young person facing death, grief, and bereavement. Pharmacologic and medical interventions by PC in AYAs are broadly similar to adults. Developing trust and being flexible are key skills that PC must use with AYAs. There is a paucity of high-quality controlled studies in the PC literature in general and AYA-PC in particular. Therefore, the methodology of this article is largely based on the narrative and clinical experience. The experience is based on clinicians' work with AYAs with cancer in Israel and Australia. Clinical lessons will be drawn by comparing and contrasting the cultures. Nevertheless, most PC clinical interventions, both pharmacologic and psychosocial, are derived from literature where there is a good evidence base. Future development of PC within AYAs should be coordinated at a national level via appropriate palliative and oncology professional organizations.

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Using medication in children’s palliative care

Oxford Textbook of Palliative Care for Children ◽

10.1093/med/9780198821311.003.0015 ◽

2021 ◽

pp. 145-152

Author(s):

Andy Gray ◽

Jane Riddin ◽

Richard Hain

Keyword(s):

Palliative Care ◽

Symptom Control ◽

Evidence Base ◽

Oral Route ◽

Essential Medicines ◽

Insufficient Evidence ◽

Rights Of The Child ◽

Child Friendly ◽

The Individual ◽

Alternative Routes

Using medication in children’s palliative care (CPC) is fraught with difficulties as a result of an insufficient evidence-base and a lack of child friendly formulations, however this cannot be a reason not to intervene and allow unnecessary suffering. A lack of access in some countries to even essential medicines such as opioids is an infringement of the rights of the child to pain relief and needs urgent redress. Often, the only reasonable option is to extrapolate from adult data and to proceed rationally on the basis of what the prescriber knows about the available drug, the individual child, and the likely effects of their disease. Alternative routes for administration of medicines in children who are no longer able to use the oral route, such as the trans- and sub-cutaneous and buccal route mean symptom control can be provided at home and until end of life.

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Hypnosis in a specialist palliative care setting – enhancing personalized care for difficult symptoms and situations

Palliative Care and Social Practice ◽

10.1177/2632352420953436 ◽

2020 ◽

Vol 14 ◽

pp. 263235242095343

Author(s):

Sara Booth

Keyword(s):

Palliative Care ◽

Care Setting ◽

Symptom Control ◽

Evidence Base ◽

Self Management ◽

Specialist Palliative Care ◽

Personalized Care ◽

Improve Symptom ◽

Palliative Care Setting

This is a personal account of using hypnosis as an adjunct to specialist palliative care (SPC) treatment approaches. After a brief systematic review of the literature, one clinician’s experience is outlined illustrated by short, anonymized case histories. It argues that the approach is underused in SPC. The barriers currently restricting its routine adoption in SPC are discussed including (1) a lack of SPC clinical trials, (2) a misunderstanding of hypnosis leading to stigma, and (3) its absence from clinicians’ training pathways. While the evidence base for the effectiveness of hypnosis in ‘supportive care’, for example, managing chemotherapy-induced vomiting, is appreciable, there is a gap in SPC. There is little data to guide the use of hypnosis in the intractable symptoms of the dying, for example, breathlessness or the distress associated with missed or late diagnosis. There are many people now ‘living with and beyond cancer’ with chronic symptomatic illness, ‘treatable but not curable’. Patients often live with symptoms over a long period, which are only partially responsive to pharmacological and other therapies. Hypnosis may help improve symptom control and quality of life. SPC trials are needed so that this useful tool for self-management of difficult symptoms can be more widely adopted.

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Palliative opioid use, palliative sedation and euthanasia: reaffirming the distinction

Journal of Medical Ethics ◽

10.1136/medethics-2018-105256 ◽

2019 ◽

Vol 46 (1) ◽

pp. 48-50 ◽

Cited By ~ 4

Author(s):

Guy Schofield ◽

Idris Baker ◽

Rachel Bullock ◽

Hannah Clare ◽

Paul Clark ◽

...

Keyword(s):

Palliative Care ◽

Real World ◽

Symptom Control ◽

Evidence Base ◽

Routine Care ◽

Palliative Sedation ◽

Routine Practice ◽

Opioid Use ◽

Important Distinction ◽

Opioid Prescribing

We read with interest the extended essay published from Riisfeldt and are encouraged by an empirical ethics article which attempts to ground theory and its claims in the real world. However, such attempts also have real-world consequences. We are concerned to read the paper’s conclusion that clinical evidence weakens the distinction between euthanasia and normal palliative care prescribing. This is important. Globally, the most significant barrier to adequate symptom control in people with life-limiting illness is poor access to opioid analgesia. Opiophobia makes clinicians reluctant to prescribe and their patients reluctant to take opioids that might provide significant improvements in quality of life. We argue that the evidence base for the safety of opioid prescribing is broader than that presented, restricting the search to palliative care literature produces significant bias as safety experience and literature for opioids and sedatives exists in many fields. This is not acknowledged in the synthesis presented. By considering additional evidence, we reject the need for agnosticism and reaffirm that palliative opioid prescribing is safe. Second, palliative sedation in a clinical context is a poorly defined concept covering multiple interventions and treatment intentions. We detail these and show that continuous deep palliative sedation (CDPS) is a specific practice that remains controversial globally and is not considered routine practice. Rejecting agnosticism towards opioids and excluding CDPS from the definition of routine care allows the rejection of Riisfeldt’s headline conclusion. On these grounds, we reaffirm the important distinction between palliative care prescribing and euthanasia in practice.

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Adolescent and Young Adult Palliative Care at the UFHealth Streetlight Program: Impacts on Pre-medical and Pre-healthcare Professionals

MedEdPublish ◽

10.15694/mep.2015.004.0002 ◽

2015 ◽

Author(s):

Ana Puig ◽

Emi Lenes ◽

Monika Ardelt ◽

Jean Theurer ◽

Jasmine Brooke Ulmer ◽

...

Keyword(s):

Palliative Care ◽

Young Adult ◽

Healthcare Professionals ◽

Adolescent And Young Adult

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Evidence-Based Treatment for the Eating Disorders

The Oxford Handbook of Eating Disorders ◽

10.1093/oxfordhb/9780195373622.013.0025_update_001 ◽

2010 ◽

pp. 451-451

Author(s):

Phillipa J. Hay ◽

Angélica de M. Claudino

Keyword(s):

Primary Care ◽

Eating Disorders ◽

Evidence Base ◽

Good Evidence ◽

Distinct Advantage ◽

Specialist Care ◽

Feeding And Eating Disorders ◽

Online Therapies ◽

Primary Care Practitioners

This chapter comprises a focused review of the best available evidence for psychological and pharmacological treatments of choice for anorexia nervosa (AN), bulimia nervosa (BN), binge eating disorder (BED), and other specified and unspecified feeding and eating disorders (OSFED and UFED), discusses the role of primary care and online therapies, and presents treatment algorithms. In AN, although there is consensus on the need for specialist care that includes nutritional rehabilitation in addition to psychological therapy, no single approach has yet been found to offer a distinct advantage. In contrast, manualized cognitive behavior therapy (CBT) for BN has attained “first-line” treatment status with a stronger evidence base than other psychotherapies. Similarly, CBT has a good evidence base in treatment of BED and for BN, and BED has been successfully adapted into less intensive and non-specialist forms. Behavioral and pharmacological weight loss management in treatment of co-morbid obesity/overweight and BED may be helpful in the short term, but long-term maintenance of effects is unclear. Primary care practitioners are in a key role, both with regard to providing care and with coordination and initiation of specialist care. There is an emerging evidence base for online therapies in BN and BED where access to care is delayed or problematic.

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Evidence-Based Treatment for the Eating Disorders

10.1093/oxfordhb/9780195373622.013.0025 ◽

2012 ◽

Cited By ~ 1

Author(s):

Phillipa J. Hay ◽

Angélica de M. Claudino

Keyword(s):

Primary Care ◽

Eating Disorders ◽

Evidence Base ◽

Good Evidence ◽

Distinct Advantage ◽

Specialist Care ◽

Feeding And Eating Disorders ◽

Online Therapies ◽

Primary Care Practitioners

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Evaluating the integration of palliative care in national health systems: an indicator rating process with EAPC task force members to measure advanced palliative care development

BMC Palliative Care ◽

10.1186/s12904-021-00728-z ◽

2021 ◽

Vol 20 (1) ◽

Author(s):

Natalia Arias-Casais ◽

Eduardo Garralda ◽

Miguel Antonio Sánchez-Cárdenas ◽

John Y. Rhee ◽

Carlos Centeno

Keyword(s):

Primary Care ◽

Palliative Care ◽

Long Term Care ◽

Task Force ◽

National Level ◽

Structured Interviews ◽

Term Care ◽

Care Facilities ◽

Rating Process

Abstract Background Palliative care (PC) development cannot only be assessed from a specialized provision perspective. Recently, PC integration into other health systems has been identified as a component of specialized development. Yet, there is a lack of indicators to assess PC integration for pediatrics, long-term care facilities, primary care, volunteering and cardiology. Aim To identify and design indicators capable of exploring national-level integration of PC into the areas mentioned above. Methods A process composed of a desk literature review, consultation and semi-structured interviews with EAPC task force members and a rating process was performed to create a list of indicators for the assessment of PC integration into pediatrics, long-term care facilities, primary care, cardiology, and volunteering. The new indicators were mapped onto the four domains of the WHO Public Health Strategy. Results The literature review identified experts with whom 11 semi-structured interviews were conducted. A total of 34 new indicators were identified for national-level monitoring of palliative care integration. Ten were for pediatrics, five for primary care, six for long-term care facilities, seven for volunteering, and six for cardiology. All indicators mapped onto the WHO domains of policy and education while only pediatrics had an indicator that mapped onto the domain of services. No indicators mapped onto the domain of use of medicines. Conclusion Meaningful contributions are being made in Europe towards the integration of PC into the explored fields. These efforts should be assessed in future regional mapping studies using indicators to deliver a more complete picture of PC development.

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

Palliative & Supportive Care ◽

10.1017/s1478951511000058 ◽

2011 ◽

Vol 9 (2) ◽

pp. 181-189 ◽

Cited By ~ 13

Author(s):

Claire E. Johnson ◽

Afaf Girgis ◽

Christine L. Paul ◽

David C. Currow

Keyword(s):

Palliative Care ◽

General Practitioners ◽

Advanced Cancer ◽

Terminal Illness ◽

Symptom Control ◽

Physical Symptoms ◽

Care Physician ◽

Self Report ◽

Psychosocial Needs ◽

Consultative Service

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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