How I Wish to be Remembered: The Use of an Advance Care Planning Document in Adolescent and Young Adult Populations
Open accessAbstract
BACKGROUND: Discussing end-of-life (EOL) issues is difficult with any population. These conversations are even more challenging with adolescents and young adults due to the poignancy of the situation and the need for developmentally appropriate language. OBJECTIVE: To explore whether adolescents and young adults living with a life-limiting illness find it acceptable and helpful to have a planning document to share their wishes and thoughts regarding EOL care. If so, to learn about specific concerns adolescents and young adults feel are important to include in such a document. METHODS: Adolescents and young adults with metastatic cancer or pediatric human immunodeficiency virus (HIV)-1 infection were presented Five Wishes, an advance directive document for adults. Each participant was asked to critically evaluate each wish in terms of whether the concepts within were considered (1) appropriate to ask individuals the participant's age; (2) helpful for other people the participant's age to think about; (3) helpful to the participant to think about; (4) stressful to contemplate. Participants were also asked to suggest modifications and additions to the document. RESULTS: Twenty patients completed the survey. Ninety-five percent of the participants reported that an advance directive like Five Wishes would be "helpful" or "very helpful" to themselves, 90% stated that the document would be helpful to others, and no patients found talking about the issues in Five Wishes "stressful" or "very stressful." Participants were more interested in items concerning how they wanted to be treated and remembered than items concerning medical decision-making. CONCLUSIONS: An advance care planning document may be appropriate and helpful for adolescents and young adults living with a serious illness. Future research should further validate the preferences identified by participants and explore whether an age-appropriate document can improve communication with family and staff in EOL care.
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
Adolescents with cancer described age-appropriate advance care planning as acceptable, useful, and helpful.
“Adolescents with cancer described age-appropriate advance care planning as acceptable, useful, and helpful.[38,39]”
From Palliative Care as a Standard of Care in Pediatric Oncology (2015) · cites this paper as [39]
The Results and Discussion report that participants generally found the planning document helpful and appropriate for people their age. However, the study included young adults and participants with HIV as well as adolescents with cancer, and it evaluated concepts in an adult document rather than a completed age-appropriate document. The cited paper therefore supports the general finding but not the claim’s narrower population and document description. (LLM, conf=0.88)
Experimental — accuracy not yet measured
Self-check
Percentages, sums and reported differences re-computed from the paper’s own numbers.
The self-check needs the paper’s full text.
Cites
Principles and Practice of Pediatric Oncology
Labotka, R. J. (2002) · JAMA · doi:10.1001/jama.288.7.894-a · Cited by 1,019 · see citing works
Committee on Bioethics and Committee on Hospital Care (2000) · Pediatrics · doi:10.1542/peds.106.2.351 · Cited by 659 · see citing works
(2006) · Springer eBooks · doi:10.1007/978-3-540-29805-2_3165 · Cited by 534 · see citing works
Talking about Death with Children Who Have Severe Malignant Disease
Kreicbergs, U., Valdimarsdóttir, U., Onelöv, E., Henter, J.-I., & Steineck, G. (2004) · New England Journal of Medicine · doi:10.1056/nejmoa040366 · Cited by 486 · see citing works
When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families
Children, E.-O.-L. C. F., Families, T., Field, M. J., & Behrman, R. E. (2003) · Cited by 416 · see citing works
Barriers to Palliative Care for Children: Perceptions of Pediatric Health Care Providers
Davies, B. I., Sehring, S. A., Partridge, J. C., Cooper, B. A., Hughes, A. M., Philp, J. C., Amidi-Nouri, A., & Kramer, R. F. (2008) · PEDIATRICS · doi:10.1542/peds.2006-3153 · Cited by 375 · see citing works
End-of-Life Care Preferences of Pediatric Patients With Cancer
Hinds, P. S., Drew, D., Oakes, L. L., Fouladi, M., Spunt, S. L., Church, C. L., & Furman, W. L. (2005) · Journal of Clinical Oncology · doi:10.1200/jco.2005.10.538 · Cited by 374 · see citing works
Tulsky, J. A. (2005) · JAMA · doi:10.1001/jama.294.3.359 · Cited by 360 · see citing works
Controlling Death: The False Promise of Advance Directives
Perkins, H. S. (2007) · Annals of Internal Medicine · doi:10.7326/0003-4819-147-1-200707030-00008 · Cited by 326 · see citing works
Feudtner, C. (2007) · Pediatric Clinics of North America · doi:10.1016/j.pcl.2007.07.008 · Cited by 288 · see citing works
(2000) · PubMed · Cited by 216 · see citing works
What do adolescents want? An exploratory study regarding end-of-life decision-making
Lyon, M. E., McCabe, M. A., Patel, K. M., & D’Angelo, L. J. (2004) · Journal of Adolescent Health · doi:10.1016/j.jadohealth.2004.02.009 · Cited by 171 · see citing works
When Children Die: Improving Palliative and End-of-Life care for Children and their Families
Chambers, T. L. (2003) · Journal of the Royal Society of Medicine · doi:10.1258/jrsm.96.8.419-a · Cited by 157 · see citing works
When Children Die: Improving Palliative and End-of-Life care for Children and their Families
Chambers, T. L. (2003) · Journal of the Royal Society of Medicine · doi:10.1177/014107680309600823 · Cited by 75 · see citing works
Impact on parents when a child has a progressive, life-threatening illness
Steele, R., & Davies, B. I. (2006) · International Journal of Palliative Nursing · doi:10.12968/ijpn.2006.12.12.22544 · Cited by 73 · see citing works
Care of Children Who Are Dying of Cancer
Morgan, E. R., & Murphy, S. B. (2000) · New England Journal of Medicine · doi:10.1056/nejm200002033420510 · Cited by 51 · see citing works
Research in Palliative Care Populations: Ethical Issues
Kristjanson, L. J., Hanson, E. J., & Balneaves, L. G. (1994) · Journal of Palliative Care · doi:10.1177/082585979401000303 · Cited by 43 · see citing works
The use of advance directives with adolescents.
McAliley, L. G., Hudson-Barr, D. C., Gunning, R. S., & Rowbottom, L. A. (2000) · PubMed · Cited by 39 · see citing works
What do adolescents want? An exploratory study regarding end-of-life decision-making
Lyon, M. E., McCabe, M. A., Patel, K. M., et al. (2004) · Journal of Adolescent Health · doi:10.1016/s1054-139x(04)00074-6 · Cited by 32 · see citing works
The journal is going electronic
Berg, T. D., & Irwin, C. E. (2004) · Journal of Adolescent Health · doi:10.1016/j.jadohealth.2004.04.003 · Cited by 23 · see citing works
Sahler, O. J. Z. (2000) · Pediatrics in Review · doi:10.1542/pir.21-10-350 · Cited by 5 · see citing works
Flagged first, then by citations
Cited by
Sorted by citations
Sable, C., Foster, E., Uzark, K. C., Bjornsen, K. D., Canobbio, M. M., Connolly, H. M., Graham, T. P., Gurvitz, M. Z., Kovacs, A. H., Meadows, A. K., et al. (2011) · Circulation · doi:10.1161/cir.0b013e3182107c56 · Cited by 470 · see citing works
Hull, J., Aniapravan, R., Chan, E., Chatwin, M., Forton, J. T., Gallagher, J., Gibson, N., Gordon, J., Hughes, I., McCulloch, R., et al. (2012) · Thorax · doi:10.1136/thoraxjnl-2012-201964 · Cited by 392 · see citing works
Adolescent and Young Adult Oncology, Version 2.2018, NCCN Clinical Practice Guidelines in Oncology
Coccia, P. F., Pappo, A. S., Beaupin, L., Borges, V. F., Borinstein, S. C., Chugh, R., Dinner, S., Folbrecht, J., Frazier, A. L., Goldsby, R., et al. (2018) · Journal of the National Comprehensive Cancer Network · doi:10.6004/jnccn.2018.0001 · Cited by 295 · see citing works
Cultural and religious considerations in pediatric palliative care
Wiener, L. S., McConnell, D. G., Latella, L. E., & Ludi, E. K. (2012) · Palliative & Supportive Care · doi:10.1017/s1478951511001027 · Cited by 271 · see citing works
Self-citationHull, J. (2012) · Thorax · doi:10.1136/thoraxjnl-2012-202043 · Cited by 241 · see citing works
Palliative Care as a Standard of Care in Pediatric Oncology
Weaver, M. S., Heinze, K. E., Kelly, K. P., Wiener, L., Casey, R. L., Bell, C. J., Wolfe, J., Garee, A. M., Watson, A., & Hinds, P. S. (2015) · Pediatric Blood & Cancer · doi:10.1002/pbc.25695 · Cited by 238 · see citing works
“[37] Adolescents with cancer described age-appropriate advance care planning as acceptable, useful, and helpful.[38,39] Effective communication among all parties from the patient and parent to the comprehensive care team (social workers, psychologists, child life specialists, and clinicians) is crucial to successfully…”
BackgroundSelf-citationAllowing Adolescents and Young Adults to Plan Their End-of-Life Care
Wiener, L., Zadeh, S., Battles, H., Baird, K., Ballard, E., Osherow, J., & Pao, M. (2012) · Pediatrics · doi:10.1542/peds.2012-0663 · Cited by 233 · see citing works
Self-citationFamily-Centered Advance Care Planning for Teens With Cancer
Lyon, M. E., Jacobs, S., Briggs, L., Cheng, Y. I., & Wang, J. (2013) · JAMA Pediatrics · doi:10.1001/jamapediatrics.2013.943 · Cited by 223 · see citing works
Weaver, M. S., Heinze, K. E., Bell, C. J., Wiener, L., Garee, A. M., Kelly, K. P., Casey, R. L., Watson, A., & Hinds, P. S. (2016) · Palliative Medicine · doi:10.1177/0269216315583446 · Cited by 184 · see citing works
Self-citationZadeh, S., Pao, M., & Wiener, L. S. (2014) · Palliative & Supportive Care · doi:10.1017/s1478951514000054 · Cited by 155 · see citing works
Self-citationLotz, J. D., Jox, R. J., Borasio, G. D., & Führer, M. (2014) · Palliative Medicine · doi:10.1177/0269216314552091 · Cited by 131 · see citing works
Verberne, L. M., Kars, M. C., Meeteren, A. Y. N. S., van den Bergh, E. M. M., Bosman, D. K., Colenbrander, D. A., Grootenhuis, M. A., & van Delden, J. J. M. (2019) · European Journal of Pediatrics · doi:10.1007/s00431-019-03393-w · Cited by 130 · see citing works
Jacobs, S. S., Perez, J., Cheng, Y. I., Sill, A. M., Wang, J., & Lyon, M. E. (2014) · Pediatric Blood & Cancer · doi:10.1002/pbc.25358 · Cited by 126 · see citing works
Pediatric Advance Care Planning: A Systematic Review
Lotz, J. D., Jox, R. J., Borasio, G. D., & Führer, M. (2013) · PEDIATRICS · doi:10.1542/peds.2012-2394 · Cited by 124 · see citing works
Barriers to accessing palliative care for pediatric patients with cancer: A review of the literature
Haines, E. R., Frost, A. C., Kane, H., & Rokoske, F. S. (2018) · Cancer · doi:10.1002/cncr.31265 · Cited by 126 · see citing works
Palliative care in adolescents and young adults with cancer
Pritchard, S., Cuvelier, G. D. E., Harlos, M., & Barr, R. D. (2011) · Cancer · doi:10.1002/cncr.26044 · Cited by 117 · see citing works
Mack, J. W., Chen, L. H., Cannavale, K., Sattayapiwat, O., Cooper, R. M., & Chao, C. (2015) · JAMA Oncology · doi:10.1001/jamaoncol.2015.1953 · Cited by 104 · see citing works
Sansom‐Daly, U. M., Wakefield, C. E., Patterson, P., Cohn, R. J., Rosenberg, A. R., Wiener, L. S., & Fardell, J. E. (2019) · Journal of Adolescent and Young Adult Oncology · doi:10.1089/jayao.2019.0084 · Cited by 104 · see citing works
Self-citationWiener, L. S., Weaver, M. S., Sansom‐Daly, U. M., & Bell, C. J. (2015) · Clinical Oncology in Adolescents and Young Adults · doi:10.2147/coaya.s49176 · Cited by 99 · see citing works
Self-citationHein, K., Knochel, K., Zaimovic, V., Reimann, D., Monz, A., Heitkamp, N., Borasio, G. D., & Führer, M. (2020) · Palliative Medicine · doi:10.1177/0269216319900317 · Cited by 79 · see citing works
End-of-life in adults with congenital heart disease: A call for early communication
Tobler, D., Greutmann, M., Colman, J. M., Greutmann-Yantiri, M., Librach, S. L., & Kovacs, A. H. (2010) · International Journal of Cardiology · doi:10.1016/j.ijcard.2010.10.050 · Cited by 77 · see citing works
Disparities in Inpatient Intensity of End-of-Life Care for Complex Chronic Conditions
Johnston, E. E., Bogetz, J. F., Saynina, O., Chamberlain, L. J., Bhatia, S., & Sanders, L. (2019) · PEDIATRICS · doi:10.1542/peds.2018-2228 · Cited by 76 · see citing works
Factors influencing palliative care in advanced dementia: a systematic review
Mataqi, M., & Aslanpour, Z. (2019) · BMJ Supportive & Palliative Care · doi:10.1136/bmjspcare-2018-001692 · Cited by 75 · see citing works
Pediatric palliative care—when quality of life becomes the main focus of treatment
Bergsträßer, E. (2012) · European Journal of Pediatrics · doi:10.1007/s00431-012-1710-z · Cited by 69 · see citing works
The Benefits and Burdens of Pediatric Palliative Care and End-of-Life Research: A Systematic Review
Weaver, M. S., Mooney‐Doyle, K., Kelly, K. P., Montgomery, K. E., Newman, A. R., Fortney, C. A., Bell, C. J., Spruit, J. L., Uveges, M. K., Wiener, L. S., et al. (2019) · Journal of Palliative Medicine · doi:10.1089/jpm.2018.0483 · Cited by 63 · see citing works
Self-citationUpdates in paediatric psycho-oncology
Mavrides, N. A., & Pao, M. (2014) · International Review of Psychiatry · doi:10.3109/09540261.2013.870537 · Cited by 61 · see citing works
Self-citationClark, J. K., & Fasciano, K. M. (2013) · American Journal of Hospice and Palliative Medicine® · doi:10.1177/1049909113510394 · Cited by 59 · see citing works
Parental Personal Sense of Duty as a Foundation of Pediatric Medical Decision-making
Feudtner, C., Schall, T. E., & Hill, D. L. (2018) · PEDIATRICS · doi:10.1542/peds.2018-0516c · Cited by 57 · see citing works
A randomized clinical trial of adolescents with HIV/AIDS: pediatric advance care planning
Lyon, M. E., D’Angelo, L. J., Dallas, R. H., Hinds, P. S., Garvie, P. A., Wilkins, M. L., Garcia, A., Briggs, L. A., Flynn, P. M., RANA, S. R., et al. (2017) · AIDS Care · doi:10.1080/09540121.2017.1308463 · Cited by 53 · see citing works
Systematic Review of Educational Interventions for Improving Advance Directive Completion
Durbin, C. R., Fish, A. F., Bachman, J. A., & Smith, K. V. (2010) · Journal of Nursing Scholarship · doi:10.1111/j.1547-5069.2010.01357.x · Cited by 52 · see citing works
Early onset colorectal cancer: Challenges across the cancer care continuum
Alzaabi, A. A., Al-Harrasi, A., AlMusalami, A., Mahyijari, N. A., Hinai, K. A., Adawi, H. A., & Al-Shamsi, H. O. (2022) · Annals of Medicine and Surgery · doi:10.1016/j.amsu.2022.104453 · Cited by 51 · see citing works
Kavalieratos, D., Ernecoff, N. C., Keim‐Malpass, J., & Degenholtz, H. B. (2015) · BMC Public Health · doi:10.1186/s12889-015-1575-y · Cited by 51 · see citing works
Palliative care for adolescents and young adults with cancer
Wolfe, J., & Rosenberg (2013) · Clinical Oncology in Adolescents and Young Adults · doi:10.2147/coaya.s29757 · Cited by 47 · see citing works
Palliative care for adolescents and young adults with advanced illness: A scoping review
Abdelaal, M., Avery, J., Chow, R., Saleem, N., Fazelzad, R., Mosher, P. J., Hannon, B. L., Zimmermann, C., & al‐Awamer, A. (2022) · Palliative Medicine · doi:10.1177/02692163221136160 · Cited by 47 · see citing works
Best practices for pediatric palliative cancer care: a primer for clinical providers
Levine, D. R., Lam, C. G., Cunningham, M. J., Remke, S. S., Chrastek, J., Klick, J. C., Macauley, R. C., & Baker, J. N. (2013) · The Journal of Supportive Oncology · doi:10.12788/j.suponc.0012 · Cited by 45 · see citing works
Ethical issues in the care of adolescent and young adult oncology patients
Sisk, B. A., Canavera, K. E., Sharma, A., Baker, J. N., & Johnson, L. (2019) · Pediatric Blood & Cancer · doi:10.1002/pbc.27608 · Cited by 44 · see citing works
Palliative Care for Cancer Survivors
Dy, S. M., Isenberg, S. R., & Hamayel, N. A. A. (2017) · Medical Clinics of North America · doi:10.1016/j.mcna.2017.06.009 · Cited by 42 · see citing works
Lyon, M. E. (2010) · HIV/AIDS - Research and Palliative Care · doi:10.2147/hiv.s7507 · Cited by 42 · see citing works
Mack, J. W., Currie, E. R., Martello, V., Gittzus, J., Isack, A., Fisher, L., Lindley, L. C., Gilbertson‐White, S., Roeland, E. J., & Bakitas, M. A. (2021) · Journal of the National Comprehensive Cancer Network · doi:10.6004/jnccn.2020.7645 · Cited by 38 · see citing works
Advance Care Planning and HIV Symptoms in Adolescence
Lyon, M. E., Garvie, P. A., D’Angelo, L. J., Dallas, R. H., Briggs, L. A., Flynn, P. M., Garcia, A., Cheng, Y. I., & Wang, J. (2018) · PEDIATRICS · doi:10.1542/peds.2017-3869 · Cited by 37 · see citing works
The child's voice in pediatric palliative and end-of-life care
Hinds, P. S., Menard, J. C., & Jacobs, S. S. (2012) · Progress in Palliative Care · doi:10.1179/1743291x12y.0000000035 · Cited by 36 · see citing works
Providing Palliative and Hospice Care to Children, Adolescents and Young Adults with Cancer
Pyke‐Grimm, K. A., Fisher, B., Haskamp, A. C., Bell, C. J., & Newman, A. R. (2021) · Seminars in Oncology Nursing · doi:10.1016/j.soncn.2021.151166 · Cited by 35 · see citing works
Mack, J. W., Cronin, A., Fasciano, K., Block, S., & Keating, N. L. (2015) · Psycho-Oncology · doi:10.1002/pon.3949 · Cited by 32 · see citing works
Palliative Care in Adolescents and Young Adults with Cancer
Donovan, K. A., Knight, D., & Quinn, G. P. (2015) · Cancer Control · doi:10.1177/107327481502200413 · Cited by 33 · see citing works
Disparities in Adolescents and Young Adults with Cancer
Isenalumhe, L. L., Fridgen, O., Beaupin, L. K., Quinn, G. P., & Reed, D. R. (2016) · Cancer Control · doi:10.1177/107327481602300414 · Cited by 33 · see citing works
Acceptability of Family-Centered Advanced Care Planning for Adolescents With HIV
Dallas, R. H., Kimmel, A. L., Wilkins, M. L., RANA, S. R., Garcia, A., Cheng, Y. I., Wang, J., & Lyon, M. E. (2016) · PEDIATRICS · doi:10.1542/peds.2016-1854 · Cited by 32 · see citing works
Lyon, M. E., Dallas, R. H., Garvie, P. A., Wilkins, M. L., Garcia, A., Cheng, Y. I., & Wang, J. (2017) · BMJ Supportive & Palliative Care · doi:10.1136/bmjspcare-2016-001224 · Cited by 29 · see citing works
Communication about prognosis and end‐of‐life in pediatric organ failure and transplantation
Cousino, M. K., Schumacher, K. R., Magee, J. C., Wolfe, J., Yu, S., Eder, S. J., & Fredericks, E. M. (2019) · Pediatric Transplantation · doi:10.1111/petr.13373 · Cited by 29 · see citing works
“It’s Back! My Remission Is Over”
Keim‐Malpass, J., Stegenga, K. A., Loudin, B., Kennedy, C., & Kools, S. M. (2015) · Journal of Pediatric Oncology Nursing · doi:10.1177/1043454215600424 · Cited by 30 · see citing works
To trach or not to trach, that is the question
Macauley, R. C. (2018) · Paediatric Respiratory Reviews · doi:10.1016/j.prrv.2018.05.004 · Cited by 27 · see citing works
Brunetta, J., Fahner, J. C., Legemaat, M., van den Bergh, E., Krommenhoek, K. B., Prinsze, K., Kars, M. C., & Michiels, E. M. C. (2022) · Children · doi:10.3390/children9060830 · Cited by 27 · see citing works
de Arruda-Colli, M. N. F., Sansom‐Daly, U. M., dos Santos, M. A., & Wiener, L. S. (2018) · Clinical Practice in Pediatric Psychology · doi:10.1037/cpp0000254 · Cited by 27 · see citing works
Self-citationPinkerton, C., Donovan, L., & Herbert, A. (2018) · The Cancer Journal · doi:10.1097/ppo.0000000000000341 · Cited by 25 · see citing works
Boss, R. D., Hutton, N., Griffin, P. L., Wieczorek, B., & Donohue, P. (2015) · Palliative Medicine · doi:10.1177/0269216315571020 · Cited by 25 · see citing works
Advance care planning in adolescents with cystic fibrosis: A quality improvement project
Kazmerski, T. M., Weiner, D. J., Matisko, J., Schachner, D., Lerch, W., May, C. S., & Maurer, S. H. (2016) · Pediatric Pulmonology · doi:10.1002/ppul.23559 · Cited by 25 · see citing works
Young Adult Knowledge and Readiness to Engage in Advance Care Planning Behaviors
Schnur, K., & Radhakrishnan, K. (2019) · Journal of Hospice and Palliative Nursing · doi:10.1097/njh.0000000000000487 · Cited by 24 · see citing works
Beerbower, E., Winters, D. E., & Kondrat, D. C. (2018) · Social Work in Health Care · doi:10.1080/00981389.2018.1430091 · Cited by 23 · see citing works
Yotani, N., Kizawa, Y., & Shintaku, H. (2016) · The Journal of Pediatrics · doi:10.1016/j.jpeds.2016.11.079 · Cited by 22 · see citing works
Are We on the Same Page? Exploring Pediatric Patients’ Involvement With Advance Care Planning
Aasen, E. R. H. V., Søvik, M. L., Størdal, K., & Lee, A. (2023) · Journal of Pain and Symptom Management · doi:10.1016/j.jpainsymman.2023.04.003 · Cited by 22 · see citing works
Yotani, N., Kizawa, Y., & Shintaku, H. (2017) · BMJ Paediatrics Open · doi:10.1136/bmjpo-2017-000102 · Cited by 20 · see citing works
Refinement of a Conceptual Model for Adolescent Readiness to Engage in End-of-Life Discussions
Bell, C. J., Zimet, G. D., Hinds, P. S., Broome, M. E., McDaniel, A. M., Mays, R. M., & Champion, V. L. (2017) · Cancer Nursing · doi:10.1097/ncc.0000000000000465 · Cited by 19 · see citing works
Hughes, B., O'Brien, M. R., Flynn, A., & Knighting, K. (2018) · Palliative Medicine · doi:10.1177/0269216318772749 · Cited by 18 · see citing works
Engaging College Undergraduates in Advance Care Planning
Sanders, S., & Robinson, E. L. (2016) · OMEGA - Journal of Death and Dying · doi:10.1177/0030222815598912 · Cited by 17 · see citing works
Palliative care in pediatric patients with hematologic malignancies
Humphrey, L. H., & Kang, T. I. (2015) · Hematology · doi:10.1182/asheducation-2015.1.490 · Cited by 17 · see citing works
Dallas, R. H., Wilkins, M. L., Wang, J., Garcia, A., & Lyon, M. E. (2012) · Contemporary Clinical Trials · doi:10.1016/j.cct.2012.05.009 · Cited by 16 · see citing works
Bergeron, S., Noskoff, K., Hayakawa, J., & Frediani, J. (2019) · Journal of Pediatric Nursing · doi:10.1016/j.pedn.2019.04.001 · Cited by 16 · see citing works
It’s okay to talk about death: Exploring the end-of-life wishes of healthy young adults
Robinson, E. L., Hart, B., & Sanders, S. (2018) · Death Studies · doi:10.1080/07481187.2018.1478913 · Cited by 16 · see citing works
Ruhe, K. M., Bădărău, D. O., Elger, B. S., & Wangmo, T. (2014) · AJOB Empirical Bioethics · doi:10.1080/23294515.2013.877097 · Cited by 14 · see citing works
Fletcher, S., Hughes, R., Pickstock, S. E., & Auret, K. A. (2017) · Journal of Adolescent and Young Adult Oncology · doi:10.1089/jayao.2017.0032 · Cited by 14 · see citing works
Advance directives among people living with HIV: room for improvement
Barocas, J. A., Erlandson, K. M., Belzer, B. K., Hess, T., & Sosman, J. M. (2014) · AIDS Care · doi:10.1080/09540121.2014.963019 · Cited by 13 · see citing works
Pao, M., & Mahoney, M. R. (2018) · Child and Adolescent Psychiatric Clinics of North America · doi:10.1016/j.chc.2018.05.001 · Cited by 13 · see citing works
Self-citationEnd-of-Life Transitions and Hospice Utilization for Adolescents
Keim‐Malpass, J., & Lindley, L. C. (2017) · Journal of Hospice and Palliative Nursing · doi:10.1097/njh.0000000000000361 · Cited by 12 · see citing works
Snaman, J. M., Feifer, D., Helton, G., Chang, Y., El-Jawahri, A. R., Volandes, A. E., & Wolfe, J. (2023) · Journal of the National Comprehensive Cancer Network · doi:10.6004/jnccn.2023.7021 · Cited by 12 · see citing works
Heeren, G. A. (2011) · Innovation The European Journal of Social Science Research · doi:10.1080/13511610.2011.553506 · Cited by 12 · see citing works
The Lived Experiences of Nurses Caring For Dying Pediatric Patients.
Curcio, D. L. (2017) · PubMed · Cited by 12 · see citing works
Dellon, E. P., Goldfarb, S., Hayes, D., Sawicki, G. S., Wolfe, J., & Boyer, D. M. (2017) · Pediatric Pulmonology · doi:10.1002/ppul.23748 · Cited by 12 · see citing works
Spirituality in older men living alone near the end-of-life.
Hirakawa, Y., Chiang, C., Yasuda, K., Iwaki, Y., Andoh, H., & Aoyama, A. (2019) · Europe PMC (PubMed Central) · doi:10.18999/nagjms.81.4.557 · Cited by 12 · see citing works
End-of-Life Decisions in Pediatric Cancer Patients
van Loenhout, R. B., van der Geest, I. M. M., Vrakking, A. M., van der Heide, A., Pieters, R., & van den Heuvel‐Eibrink, M. M. (2015) · Journal of Palliative Medicine · doi:10.1089/jpm.2015.29000.rbvl · Cited by 11 · see citing works
Caring for a Teen with Congenital Heart Disease
Gupta, P. (2013) · Pediatric Clinics of North America · doi:10.1016/j.pcl.2013.09.019 · Cited by 11 · see citing works
Sansom‐Daly, U. M., Zhang, M., Evans, H. E., McLoone, J. K., Wiener, L. S., Cohn, R. J., Anazodo, A. C., Patterson, P., & Wakefield, C. E. (2023) · Cancers · doi:10.3390/cancers15072129 · Cited by 10 · see citing works
Self-citationPalliative Care for Children with Central Nervous System Malignancies
Baenziger, P. H., & Moody, K. M. (2018) · Bioengineering · doi:10.3390/bioengineering5040085 · Cited by 10 · see citing works
O protagonismo da criança em cuidados paliativos para a efetivação da sua segurança
Valete, C. O. S., Ferreira, E. A. L., & Bruno, C. H. (2022) · CADERNOS IBERO-AMERICANOS DE DIREITO SANITÁRIO · doi:10.17566/ciads.v11i3.927 · Cited by 8 · see citing works
Lee, A., DeGroote, N. P., & Brock, K. E. (2023) · Journal of Palliative Medicine · doi:10.1089/jpm.2023.0063 · Cited by 8 · see citing works
Farooki, S., Olaiya, O., Tarbell, L., Clark, N. A., Linebarger, J., Stroh, J., Ellis, K., & Lewing, K. B. (2020) · Pediatric Blood & Cancer · doi:10.1002/pbc.28804 · Cited by 8 · see citing works
(2015) · Obstetrics and Gynecology · doi:10.1097/01.aog.0000459869.98866.91 · Cited by 8 · see citing works
Building a Better Advance Directive: Next Steps
Shalowitz, D. I., & Silveira, M. J. (2010) · The American Journal of Bioethics · doi:10.1080/15265161003650502 · Cited by 8 · see citing works
Palliative Care for Children with Cancer and Their Families
Rosenberg, A. R., Wolfe, J., & Jones, B. L. (2015) · Springer eBooks · doi:10.1007/978-3-319-21374-3_14 · Cited by 7 · see citing works
Rapoport, A. (2024) · Paediatrics & Child Health · doi:10.1093/pch/pxae041 · Cited by 7 · see citing works
Joseph's Wishes: Ethical Decision‐Making in Duchenne Muscular Dystrophy
Penner, L., Cantor, R. M., & Siegel, L. B. (2010) · Mount Sinai Journal of Medicine A Journal of Translational and Personalized Medicine · doi:10.1002/msj.20196 · Cited by 7 · see citing works
Linane, H., Tanjavur, B., & Sullivan, L. (2024) · Palliative Medicine · doi:10.1177/02692163241242331 · Cited by 6 · see citing works
Cunningham, J. M., Ferraro, K., Durfee, J., & Indovina, K. A. (2024) · Journal of Patient Experience · doi:10.1177/23743735241255450 · Cited by 6 · see citing works
Overcoming Challenges to Surrogate Decision Making for Young Adults at the End of Life
Lightfoot, N., Kirkova, Y., Fox, S. B., & Alan, S. (2021) · American Journal of Hospice and Palliative Medicine® · doi:10.1177/10499091211001007 · Cited by 6 · see citing works
Hughes, B., O'Brien, M. R., Flynn, A., & Knighting, K. (2022) · Palliative Medicine · doi:10.1177/02692163221083447 · Cited by 6 · see citing works
Improving Supportive and Palliative Care Integration in Adolescent and Young Adult Cancer
Fernando, R. A. (2023) · Journal of Adolescent and Young Adult Oncology · doi:10.1089/jayao.2023.0096 · Cited by 5 · see citing works
Exploring Five Wishes and End-of-Life Care Planning in Young Adults
Stone, A., Perre, T., & Young, Y. (2023) · American Journal of Hospice and Palliative Medicine® · doi:10.1177/10499091231158081 · Cited by 5 · see citing works
Pediatric palliative care for youth with HIV/AIDS: systematic review of the literature
Wilkins, M. L., Dallas, R. H., Fanone, K. E., & Lyon, M. E. (2013) · HIV/AIDS - Research and Palliative Care · doi:10.2147/hiv.s44275 · Cited by 5 · see citing works
Murray, H., Pettitt, N., & Tomas, J. (2020) · Journal of Adolescent and Young Adult Oncology · doi:10.1089/jayao.2020.0149 · Cited by 4 · see citing works
Pao, M., & Wiener, L. S. (2011) · Elsevier eBooks · doi:10.1016/b978-1-4377-0262-0.00026-8 · Cited by 4 · see citing works
Self-citationCheng, H. W. B., Li, C. H. R., Yeung, K. Y., Lee, T., Chan, K. P., Chung, W. K. V., Hsu, D. Y., Chan, O. M. I., Chui, R., Man, C. W., et al. (2022) · Progress in Palliative Care · doi:10.1080/09699260.2022.2066270 · Cited by 4 · see citing works
Edwards, D. J., Carrier, J., Gillen, E., Hawker, C., Sutton, J., & Kelly, D. M. (2014) · The JBI Database of Systematic Reviews and Implementation Reports · doi:10.11124/jbisrir-2014-1622 · Cited by 4 · see citing works
- Authors
- Wiener, L., Ballard, E., Brennan, T., Battles, H., Martinez, P., & Pao, M.
- Affiliations
- National Institutes of Health (US)
- Corresponding author
- Wiener, Lori
- Venue
- Journal of Palliative Medicine
- Publisher
- SAGE Publications
- Published
- 2008-12
- Volume
- 11
- Issue
- 10
- Pages
- 1309-1313
- ISSN
- 1096-6218 (ISSN-L)
- 1557-7740
- PMC
- PMC2650081
- OpenAlex
- W2042951282
- Semantic Scholar
- 371513d37356fd1d8b4280ab7ae83d71e3de06ba
- Cited by
- 148
- References
- 20
- Citations by year
- 2026: 3 · 2025: 3 · 2024: 11 · 2023: 7 · 2022: 9 · 2021: 6 · 2020: 6 · 2019: 13 · 2018: 16 · 2017: 12 · 2016: 8 · 2015: 13 · 2014: 8 · 2013: 8 · 2012: 11
- FWCI
- 4.62
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Journal of Palliative Medicine (publishedVersion)
- Europe PMC (PubMed Central) (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- DigitalGeorgetown (Georgetown University Library) (submittedVersion)
- Funders
- National Institutes of Health (Z99 CA999999)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
- Keywords
- advance care planning, advance directives, adolescents, young adults, end-of-life care, life-limiting illness, metastatic cancer, pediatric HIV-1 infection, patient preferences, age-appropriate communication, palliative care
- MeSH terms
- Adolescent, Adult, Female, Health Planning, Humans, Male, Terminal Care, United States, Advance Directives, Young Adult
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review
