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1.
Pain Manag Nurs ; 15(1): 126-31, 2014 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-24602431

RESUMO

Neuropathic pain (NP) in children with cancer is not well characterized. In a retrospective review of patient data from a 3.5-year period, we describe the prevalence of NP and the characteristics, duration of follow-up, and interventions provided for NP among patients referred to a pediatric oncology center's pain management service. Fifteen percent (66/439) of all referrals to our pain service were for NP (56/323 patients [17%]; 34 male, 22 female). The NP patient group had 1,401 clinical visits (778 inpatient visits [55.5%] and 623 outpatient visits [44.5%]). Patients with NP had a significantly greater mean number of pain visits per consultation (p = .008) and significantly more days of pain service follow-up (p < .001) than did other patients. The most common cause of NP was cancer treatment rather than the underlying malignancy. Pharmacologic management of NP was complex, often comprising three medications. Nonpharmacologic approaches were used for 57.6% of NP referrals. Neuropathic pain is less frequently encountered than non-NP in children with cancer; nevertheless, it is more difficult to treat, requiring longer follow-up, more clinical visits, complex pharmacologic management, and the frequent addition of nonpharmacologic interventions.


Assuntos
Analgésicos/administração & dosagem , Neoplasias/complicações , Neuralgia , Equipe de Assistência ao Paciente , Encaminhamento e Consulta , Adolescente , Adulto , Institutos de Câncer , Criança , Pré-Escolar , Bases de Dados Factuais , Feminino , Humanos , Lactente , Masculino , Neuralgia/tratamento farmacológico , Neuralgia/etiologia , Neuralgia/enfermagem , Manejo da Dor/métodos , Manejo da Dor/enfermagem , Pediatria , Estudos Retrospectivos , Adulto Jovem
2.
Pain Manag Nurs ; 14(3): 176-81, 2013 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-23972869

RESUMO

The American Society for Pain Management Nursing (ASPMN) has updated its 2007 position statement on the use of authorized agent controlled analgesia (AACA) for patients who are unable to independently utilize patient-controlled analgesia (PCA). ASPMN continues to support the use of AACA to provide timely and effective pain management while promoting equitable care for vulnerable patient populations who are unable to utilize PCA. ASPMN does not support the use of "PCA by Proxy" in which unauthorized individuals activate PCA for a patient. The background of the development of the position statement, definitions related to AACA, and application of ethical principles to the use of AACA are presented in the document. This position statement includes an updated review of the evidence related to AACA and a call for further research. Clinical practice recommendations for authorized agents, nurses, prescribers, and organizations are provided with an emphasis on the importance of appropriate authorized agent selection, education, diligent patient assessment and medication management.


Assuntos
Analgesia Controlada pelo Paciente/normas , Manejo da Dor/normas , Dor/tratamento farmacológico , Dor/enfermagem , Guias de Prática Clínica como Assunto , Sociedades de Enfermagem , Analgésicos/uso terapêutico , Humanos , Manejo da Dor/enfermagem
3.
J Pediatr Hematol Oncol ; 34(6): 416-20, 2012 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-22767126

RESUMO

Patient-controlled analgesia offers safe and effective pain control for children who can self-administer medication. Some children may not be candidates for patient-controlled analgesia (PCA) unless a proxy can administer doses. The safety of proxy-administered PCA has been studied, but the safety of parent-administered PCA in children with cancer has not been reported. In this study, we compare the rate of complications in PCA by parent proxy versus PCA by clinician (nurse) proxy and self-administered PCA. Our pediatric institution's quality improvement database was reviewed for adverse events associated with PCA from 2004 through 2010. Each PCA day was categorized according to patient or proxy authorization. Data from 6151 PCA observation days were included; 61.3% of these days were standard PCA, 23.5% were parent-proxy PCA, and 15.2% were clinician-proxy PCA days. The mean duration of PCA use was 12.1 days, and the mean patient age was 12.3 years. The mean patient age was lower in the clinician-proxy (9.4 y) and parent-proxy (5.1 y) groups, respectively. The complication rate was lowest in the parent-proxy group (0.62%). We found that proxy administration of PCA by authorized parents is as safe as clinician administered and standard PCA at our pediatric institution.


Assuntos
Analgesia Controlada pelo Paciente/efeitos adversos , Analgésicos Opioides/uso terapêutico , Manejo da Dor , Dor Pós-Operatória/tratamento farmacológico , Dor Pós-Operatória/etiologia , Procurador , Adolescente , Adulto , Analgesia Controlada pelo Paciente/enfermagem , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Pais , Prognóstico , Estudos Retrospectivos , Adulto Jovem
4.
J Palliat Med ; 15(8): 916-22, 2012 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-22734685

RESUMO

BACKGROUND: In this single-site study, we evaluated the feasibility of a parent-clinician communication intervention designed to: identify parents' rationale for the phase I, do-not-resuscitate (DNR), or terminal care decision made on behalf of their child with incurable cancer; identify their definition of being a good parent to their ill child; and provide this information to the child's clinicians in time to be of use in the family's care. METHODS: Sixty-two parents of 58 children and 126 clinicians participated. Within 72 hours after the treatment decision, parents responded to 6 open-ended interview questions and completed a 10-item questionnaire about the end-of-life communication with their child's clinicians. They completed the questionnaire again two to three weeks later and responded to three open-ended questions to assess the benefit:risk ratio of their study participation three months after the intervention. Clinicians received the interview data within hours of the parent interview and evaluated the usefulness of the information three weeks later. RESULTS: All preestablished intervention feasibility criteria were met; 77.3% of families consented; and in 100% of interventions, information was successfully provided individually to 3 to 11 clinicians per child before the child died. No harm was reported by parents as a result of participating; satisfaction and other benefits were reported. Clinicians reported moderate to strong satisfaction with the intervention. CONCLUSION: The communication intervention was feasible within hours of decision making, was acceptable and beneficial without harm to participating parents, and was acceptable and useful to clinicians in their care of families.


Assuntos
Neoplasias , Pais/psicologia , Relações Profissional-Família , Assistência Terminal , Doente Terminal , Adulto , Atitude do Pessoal de Saúde , Ensaios Clínicos Fase I como Assunto , Comunicação , Tomada de Decisões , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Ordens quanto à Conduta (Ética Médica) , Adulto Jovem
5.
Paediatr Anaesth ; 22(11): 1110-6, 2012 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-22587819

RESUMO

BACKGROUND: Continuous peripheral nerve blocks (CPNBs) are increasingly used to control postoperative and chronic pain. At our pediatric oncology institution, the duration of CPNBs is often prolonged. The risk of catheter-associated infection with prolonged CPNBs has not been previously investigated. AIM: We analyzed the incidence of CPNB-related infection and its relation to catheter duration, catheter site, intensive care stay, and antibiotic coverage. METHODS: All CPNBs placed at our institution between August 1, 2005 and October 31, 2010 were studied. Primary diagnosis and the site, indication, duration, and infectious adverse effects of CPNBs were obtained from our Pain Service QI database. Patients' age and sex, antibiotic administration, and number of days in intensive care were collected from patients' medical records. RESULTS: The use of 179 catheters in 116 patients was evaluated. Mean age at CPNB placement was 15.1 years (median, 14.7; range, 0.4-26.9). The most frequent indication for CPNB was surgery (89.4%), most commonly orthopedic (78.8%). Mean CPNB duration was 7.2 days (median, 5.0; range, 1-81 days). Two cases (1.12%) of CPNBs developed signs of infection, both associated with femoral catheters. The infections were mild and necessitated catheter removal at days 10 and 13, respectively. CONCLUSION: Nerve block catheter-associated infections are infrequent at our institution despite prolonged CPNB use. Both patients with infection had femoral catheters and prolonged catheter (≥ 10 days) use.


Assuntos
Analgesia/instrumentação , Infecções Relacionadas a Cateter/epidemiologia , Bloqueio Nervoso/instrumentação , Adolescente , Adulto , Antibacterianos/uso terapêutico , Infecções Relacionadas a Cateter/tratamento farmacológico , Criança , Cuidados Críticos/estatística & dados numéricos , Feminino , Hematologia , Humanos , Incidência , Lactente , Tempo de Internação/estatística & dados numéricos , Masculino , Oncologia , Nervos Periféricos/efeitos dos fármacos , Estudos Retrospectivos , Medição de Risco , Tennessee/epidemiologia , Fatores de Tempo , Adulto Jovem
6.
J Opioid Manag ; 7(5): 353-61, 2011.
Artigo em Inglês | MEDLINE | ID: mdl-22165034

RESUMO

OBJECTIVE: To augment the literature on methadone applications in pediatric oncology, the authors reviewed the use of methadone at a pediatric cancer center over a 5-year period. DESIGN AND SETTING: Forty-one patients received methadone for inpatient or outpatient pain management. The authors retrospectively reviewed their demographic characteristics, diagnoses, type of pain (nociceptive, neuropathic, or mixed) and causes of pain, and the indications, dose regimens, adverse effects, and outcomes of methadone treatment. RESULTS: There were four types of clinical uses for methadone in 41 patients (10 patients had two): nociceptive pain unresponsive to other opioids (17 patients, 33.3 percent), neuropathic pain (20 patients, 39.2 percent), facilitation of weaning from opioids (11 patients, 21.6 percent), and end-of-life pain management (3 patients, 5.9 percent). The mean age of the 24 males (58.5 percent) and 17 females (41.5 percent) at the start of treatment was 15.7 years (range, 0.6-23 years). The most common diagnoses were leukemia (n = 10, 24.4 percent), osteosarcoma (n = 7, 17.0 percent), and rhabdomyosarcoma (n = 5, 12.2 percent). The causes of pain were bone marrow transplant (n = 13, 31.7 percent), amputation (n = 6, 14.6 percent), chemotherapy (n = 5, 12.2 percent), tumor (n = 5, 12.2 percent), limb-sparing surgery (n = 4, 9.8 percent), and other (n = 8, 19.5 percent). Efficacy was assessed at the end (or after 6 months) of methadone treatment. For many patients (43.1 percent), methadone showed efficacy in achieving the purpose for which it was prescribed, including reduction of nociceptive or neuropathic pain and prevention of opioid withdrawal. Sedation was the most common side effect (24.4 percent). CONCLUSIONS: Methadone was effective for pediatric patients with neuropathic pain or nociceptive pain unresponsive to other opioids, and it effectively prevented opioid withdrawal.


Assuntos
Analgésicos Opioides/uso terapêutico , Metadona/uso terapêutico , Neoplasias/complicações , Dor/tratamento farmacológico , Adolescente , Analgésicos Opioides/efeitos adversos , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Metadona/efeitos adversos , Dor/diagnóstico , Dor/etiologia , Medição da Dor , Estudos Retrospectivos , Síndrome de Abstinência a Substâncias/prevenção & controle , Tennessee , Fatores de Tempo , Resultado do Tratamento , Adulto Jovem
8.
Pain Manag Nurs ; 12(3): 118-145.e10, 2011 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-21893302

RESUMO

As the complexity of analgesic therapies increases, priorities of care must be established to balance aggressive pain management with measures to prevent or minimize adverse events and to ensure high quality and safe care. Opioid analgesia remains the primary pharmacologic intervention for managing pain in hospitalized patients. Unintended advancing sedation and respiratory depression are two of the most serious opioid-related adverse events. Multiple factors, including opioid dosage, route of administration, duration of therapy, patient-specific factors, and desired goals of therapy, can influence the occurrence of these adverse events. Furthermore, there is an urgent need to educate all members of the health care team about the dangers and potential attributes of administration of sedating medications concomitant with opioid analgesia and the importance of initiating rational multimodal analgesic plans to help avoid adverse events. Nurses play an important role in: 1) identifying patients at risk for unintended advancing sedation and respiratory depression from opioid therapy; 2) implementing plans of care to assess and monitor patients; and 3) intervening to prevent the worsening of adverse events. Despite the frequency of opioid-induced sedation, there are no universally accepted guidelines to direct effective and safe assessment and monitoring practices for patients receiving opioid analgesia. Moreover, there is a paucity of information and no consensus about the benefits of technology-supported monitoring, such as pulse oximetry (measuring oxygen saturation) and capnography (measuring end-tidal carbon dioxide), in hospitalized patients receiving opioids for pain therapy. To date, there have not been any randomized clinical trials to establish the value of technologic monitoring in preventing adverse respiratory events. Additionally, the use of technology-supported monitoring is costly, with far-reaching implications for hospital and nursing practices. As a result, there are considerable variations in screening for risk and monitoring practices. All of these factors prompted the American Society for Pain Management Nursing to approve the formation of an expert consensus panel to examine the scientific basis and state of practice for assessment and monitoring practices for adult hospitalized patients receiving opioid analgesics for pain control and to propose recommendations for patient care, education, and systems-level changes that promote quality care and patient safety.


Assuntos
Analgésicos Opioides/efeitos adversos , Recursos Humanos de Enfermagem Hospitalar/normas , Dor/tratamento farmacológico , Guias de Prática Clínica como Assunto , Insuficiência Respiratória/induzido quimicamente , Humanos , Dor/epidemiologia , Dor/enfermagem , Insuficiência Respiratória/epidemiologia , Insuficiência Respiratória/enfermagem , Fatores de Risco
9.
Pain Manag Nurs ; 12(2): 82-94, 2011 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-21620310

RESUMO

A significant proportion of patients report long-term pain that is ≥5 on a 0-10 intensity scale after limb-sparing surgery for malignancies of the long bones. Patients experience several distinct types of pain after limb-sparing surgery which constitute a complex clinical entity. This retrospective study examined 26 years of experience in a pediatric institution (1981-2007) in pain management as long as 6 months after limb-sparing surgery and reviewed the historical evolution of pain interventions. One hundred fifty patients underwent 151 limb-salvage surgeries for bone cancer of the extremities in this series. Pain treatment increased progressively in complexity. Therapies included opioids, nonsteroidal antiinflammatory drugs, acetaminophen-opioid combinations, postoperative continuous epidural infusion, anticonvulsants and tricyclic antidepressants for neuropathic pain, local anesthetic wound catheters, and continuous peripheral nerve block catheters. Management of pain after limb-sparing surgery has evolved over the 26 years of this review. It currently relies on multiple "layers" of pharmacologic and nonpharmacologic strategies to address the complex mixed nociceptive and neuropathic mechanisms of pain in this patient population.


Assuntos
Analgésicos/uso terapêutico , Neoplasias Ósseas/cirurgia , Salvamento de Membro , Osteossarcoma/cirurgia , Dor Pós-Operatória/tratamento farmacológico , Acetaminofen/uso terapêutico , Adolescente , Analgésicos Opioides/uso terapêutico , Anti-Inflamatórios não Esteroides/uso terapêutico , Anticonvulsivantes/uso terapêutico , Antidepressivos Tricíclicos/uso terapêutico , Criança , Feminino , Humanos , Perna (Membro)/cirurgia , Masculino , Metadona/uso terapêutico , Medição da Dor , Dor Pós-Operatória/enfermagem , Estudos Retrospectivos , Resultado do Tratamento , Adulto Jovem
12.
J Clin Oncol ; 27(35): 5979-85, 2009 Dec 10.
Artigo em Inglês | MEDLINE | ID: mdl-19805693

RESUMO

PURPOSE: When a child's cancer progresses beyond current treatment capability, the parents are likely to participate in noncurative treatment decision making. One factor that helps parents to make these decisions and remain satisfied with them afterward is deciding as they believe a good parent would decide. Because being a good parent to a child with incurable cancer has not been formally defined, we conducted a descriptive study to develop such a definition. METHODS: In face-to-face interviews, 62 parents who had made one of three decisions (enrollment on a phase I study, do not resuscitate status, or terminal care) for 58 patients responded to two open-ended questions about the definition of a good parent and about how clinicians could help them fulfill this role. For semantic content analysis of the interviews, a rater panel trained in this method independently coded all responses. Inter-rater reliability was excellent. RESULTS: Among the aspects of the definition qualitatively identified were making informed, unselfish decisions in the child's best interest, remaining at the child's side, showing the child that he is cherished, teaching the child to make good decisions, advocating for the child with the staff, and promoting the child's health. We also identified 15 clinician strategies that help parents be a part of making these decisions on behalf of a child with advanced cancer. CONCLUSION: The definition and the strategies may be used to guide clinicians in helping parents fulfill the good parent role and take comfort afterward in having acted as a good parent.


Assuntos
Comportamento de Escolha , Ensaios Clínicos Fase I como Assunto/psicologia , Neoplasias/terapia , Cuidados Paliativos/psicologia , Pais/psicologia , Ordens quanto à Conduta (Ética Médica)/psicologia , Assistência Terminal/psicologia , Adaptação Psicológica , Adolescente , Adulto , Atitude do Pessoal de Saúde , Criança , Defesa da Criança e do Adolescente , Pré-Escolar , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Lactente , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Relações Pais-Filho , Relações Profissional-Família , Espiritualidade , Adulto Jovem
13.
J Pain Symptom Manage ; 35(6): 656-69, 2008 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-18329841

RESUMO

Health care institutions must use the principles of quality improvement to demonstrate appropriate assessment and effective management of pain. Here, we describe the quality improvement initiative implemented at our pediatric institution to improve the quality of pain management. We conducted chart audits for the previous 24 hours during which patients received inpatient care. Over six years, 2,478 charts were audited for 87 24-hour periods (average 1.2 days/month) to answer the following: (1) Was pain intensity assessed as per the institutional pain standard of care, (2) What proportion of audited inpatients had significant pain (>or=5/10), and (3) When significant pain (>or=5/10) occurred, was treatment effective (pain score

Assuntos
Hospitais Pediátricos/normas , Neoplasias/complicações , Dor/tratamento farmacológico , Criança , Pré-Escolar , Feminino , Hospitais Pediátricos/organização & administração , Humanos , Pacientes Internados , Masculino , Dor/etiologia , Medição da Dor , Garantia da Qualidade dos Cuidados de Saúde
14.
J Pain Symptom Manage ; 35(4): 412-9, 2008 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-18291619

RESUMO

Supplementation of epidural opioid analgesia with intravenous opioids is usually avoided because of concern about respiratory depression. However, the choice of adjunct analgesic agents for pediatric oncology patients is limited. Antipyretic drugs may mask fever in neutropenic patients, and nonsteroidal anti-inflammatory agents may exert antiplatelet effects and interact with chemotherapeutic agents. We examined the safety of concurrent use of epidural and intravenous opioids in a consecutive series of 117 epidural infusions in pediatric patients and compared our findings to those reported by other investigators. We observed a 0.85% rate of clinically significant respiratory complications. The single adverse event was associated with an error in dosage. In our experience, the supplementation of epidural opioid analgesia with intravenous opioids has been a safe method of postoperative pain control for pediatric patients with cancer.


Assuntos
Analgesia Epidural/métodos , Analgésicos Opioides/administração & dosagem , Analgésicos Opioides/efeitos adversos , Neoplasias/cirurgia , Dor Pós-Operatória/tratamento farmacológico , Adolescente , Analgesia Epidural/efeitos adversos , Analgesia Controlada pelo Paciente/efeitos adversos , Analgesia Controlada pelo Paciente/métodos , Criança , Pré-Escolar , Humanos , Lactente , Injeções Intravenosas , Insuficiência Respiratória/induzido quimicamente
16.
Pain Manag Nurs ; 8(1): 4-11, 2007 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-17336864

RESUMO

The American Society for Pain Management Nursing (ASPMN), in order to address sentinel alerts issued by JCAHO in 2004 and ISMP in 2005 concerning "PCA by Proxy", has developed a position statement and clinical practice recommendations on Authorized and Unauthorized (PCA by Proxy) Dosing of Analgesic Infusion Pumps, approved by the Board of Directors in June of 2006. In short, ASPMN does not support the use of "PCA by Proxy". ASPMN does, however, support the practice of Authorized Agent Controlled Analgesia in a variety of patient care settings when the agency has in place clear guidelines outlining the conditions under which this practice shall be implemented and outlining monitoring procedures that will insure safe use of the therapy. In addition to outlining this position, the paper clarifies and distinguishes between the unsafe practice of "PCA by Proxy", in which unauthorized individuals activate the dosing button of an analgesic infusion pump for a patient receiving Patient Controlled Analgesia, and the safe practice of Authorized Agent Controlled Analgesia (AACA). Furthermore, the paper examines the ethical and safety issues and outlines the necessary screening and patient/family education needed to implement AACA. The position statement describes criteria for the use of AACA, guidelines for selection and education of the authorized agent, key prescription and monitoring recommendations during therapy, and quality improvement activities to insure safety and effectiveness.


Assuntos
Analgesia Controlada pelo Paciente/normas , Cuidadores , Procurador , Analgesia Controlada pelo Paciente/ética , Analgesia Controlada pelo Paciente/enfermagem , Cuidadores/educação , Cuidadores/ética , Monitoramento de Medicamentos/enfermagem , Monitoramento de Medicamentos/normas , Família/psicologia , Humanos , Dor/tratamento farmacológico , Dor/enfermagem , Educação de Pacientes como Assunto/normas , Seleção de Pacientes , Ética Baseada em Princípios , Gestão da Segurança/normas , Gestão da Qualidade Total/normas
18.
Anesthesiol Clin ; 24(1): 145-61, ix, 2006 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-16487900

RESUMO

This article reviews the unique challenges of pediatric palliative medicine. These challenges originate from the specific epidemiology of pediatric diseases for which palliative care is indicated and the necessity to provide child-focused, family-oriented, relationship-centered medical care. The emphasis of the ultimate aims of pediatric palliative care is to care for the body, mind, and spirit, to enhance quality of life, and to minimize suffering.


Assuntos
Cuidados Paliativos , Doente Terminal , Analgésicos Opioides/uso terapêutico , Criança , Saúde da Família , Humanos , Manejo da Dor , Assistência Terminal
19.
Anesth Analg ; 101(6): 1623-1627, 2005 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-16301231

RESUMO

Between February 1999 and December 2003, we studied the use of patient-controlled analgesia (PCA) to control pain in 1011 children and young adults with cancer, by evaluating 4972 24-h periods of PCA usage, 576 of which involved PCA by proxy. Selection of patients for PCA by proxy was based on younger age group, neuromuscular limitation, expectation of repeated painful procedures, and terminal disease. We measured the incidence of respiratory and neurological complications related to the use of PCA. Major complications were observed during 70 of the 4972 24-h observations, with 28 of 4972, or 0.56%, involving respiratory complications, 35 of 4972, or 0.7%, involving neurological complications, and 7 of 4972 24-h observations, or 0.14%, involving both respiratory and neurological complications. In the PCA by proxy group two respiratory complications, two neurological complications and one mixed respiratory and neurological complication were observed [corrected] Reversal of opioid-related respiratory or neurological effects with naloxone was required in three instances, two in the standard PCA group and one in the PCA by proxy group. Recommendations to ensure continuing safety include careful patient selection, education of proxy users, appropriate documentation, and institutional guidelines.


Assuntos
Analgesia Controlada pelo Paciente/efeitos adversos , Neoplasias/fisiopatologia , Procurador , Adolescente , Adulto , Criança , Pré-Escolar , Humanos , Lactente , Recém-Nascido , Respiração/efeitos dos fármacos
20.
J Clin Oncol ; 23(36): 9146-54, 2005 Dec 20.
Artigo em Inglês | MEDLINE | ID: mdl-16172453

RESUMO

PURPOSE: The viewpoint of the terminally ill child at the time of an end-of-life decision has not been formally investigated. We identified the preferences of children and adolescents with advanced cancer about their end-of-life care and the factors that influenced their decisions. PATIENTS AND METHODS: Pediatric patients 10 or more years of age were interviewed within 7 days of participating in one of the following three end-of-life decisions: enrollment onto a phase I trial (n = 7), adoption of a do not resuscitate order (n = 5), or initiation of terminal care (n = 8). The patient, a parent, and the primary pediatric oncologist were interviewed separately by using open-ended interview questions. RESULTS: Twenty patients, aged 10 to 20 years (mean, 17 years and 4 months), with a refractory solid tumor (n = 12), brain tumor (n = 4), or leukemia (n = 4) participated. Eighteen patients (90%) accurately recalled all of their treatment options and identified their own death as a consequence of their decision. The factors that were most frequently identified included the following: for patients, caring about others (n = 19 patients); for parents, the child's preferences (n = 18 parents); and for physicians, the patient's prognosis and comorbid conditions (n = 14 physicians). CONCLUSION: These children and adolescents with advanced cancer realized that they were involved in an end-of-life decision, understood the consequences of their decision, and were capable of participating in a complex decision process involving risks to themselves and others. The decision factors most frequently reported by patients were relationship based; this finding is contrary to existing developmental theories.


Assuntos
Tomada de Decisões , Neoplasias/reabilitação , Assistência Terminal , Adolescente , Adulto , Altruísmo , Criança , Estudos Transversais , Morte , Feminino , Humanos , Masculino , Relações Pais-Filho , Prognóstico
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