Living fully, choosing wisely: Exploring patient-centred approaches to palliative care and MAiD – Part I
Abstract
With increasing numbers of individuals presenting with advanced cancer, strong recommendations for the integration of palliative care in oncology, and the availability and acceptance of medical assistance in dying, oncology nurses must be informed and prepared to provide patient-centred care in advanced cancer. This is part one of a two-part case report presenting an exploration of early palliative care and medical assistance in dying in the setting of advanced cancer. It focuses on the patient and family experience throughout the illness trajectory, from diagnosis to death, and incorporates some of the common challenges seen in supporting someone with advanced cancer. While highlighting the perspective of the patient and family, it demonstrates how palliative care and medical assistance in dying can work together to achieve a patient’s goals. The paper provides valuable insight for oncology nurses to consider in their practice.
Full Text:
PDFReferences
Ahmed, Naqvi, S. F., Sinnarajah, A., McGhan, G., Simon, J., & Santana, M. J. (2023). Patient & caregiver experiences: Qualitative study comparison before and after implementation of early palliative care for advanced colorectal cancer. Canadian Journal of Nursing Research, 55(1), 110–125. https://doi.org/10.1177/08445621221079534
Bakitas, M. A., Tosteson, T. D., Li, Z., Lyons, K. D., Hull, J. G., Li, Z., Dionne-Odom, J. N., Frost, J., Dragnev, K. H., Hegel, M. T., Azuero, A., & Ahles, T. A. (2015). Early versus delayed initiation of concurrent palliative oncology care: Patient outcomes in the ENABLE III randomized controlled trial. Journal of Clinical Oncology, 33(13), 1438–1445. https://doi.org/10.1200/JCO.2014.58.6362
Bill C-7. (2020c). An Act to amend the Criminal Code (medical assistance in dying) 43rd Parliament, 2nd Session, Royal assent, March 17, 2021. https://parl.ca/DocumentViewer/en/43-2/bill/C-7/royal-assent
Bill C-14, An Act to amend the Criminal Code and to make related amendments to other acts (medical assistance in dying), RSC 2016, c 3 [Canada]. https://lop.parl.ca/staticfiles/PublicWebsite/Home/ResearchPublications/LegislativeSummaries/PDF/42-1/c14-e.pdf
College of Physicians and Surgeons in Ontario (2024). Advice to the profession: Human rights in the provision of health services. CPSO - Advice to the Profession: Human Rights in the Provision of Health Services
Dying with Dignity Canada (2021). Get the facts on MAID | Dying with Dignity Canada
Elkefi, S., & Asan, O. (2023). The impact of patient-centered care on cancer patients’ QOC, self-efficacy, and trust towards doctors: Analysis of a national survey. Journal of Patient Experience, 10, 23743735231151533. https://doi.org/10.1177/23743735231151533
Emanuel, E. J., Fairclough, D., & Emanuel, L. (2000). Attitudes and desires related to euthanasia and physician- assisted suicide among terminally ill patients and their caregivers. Journal of the American Medical Association, 284, 2460–2468.
Fliedner, Zambrano, S., Schols, J. M., Bakitas, M., Lohrmann, C., Halfens, R. J., & Eychmüller, S. (2019). An early palliative care intervention can be confronting but reassuring: A qualitative study on the experiences of patients with advanced cancer. Palliative Medicine, 33(7), 783–792. https://doi.org/10.1177/0269216319847884
Frolic, A. N., Swinton, M., Murray, L., & Oliphant, A. (2020). Double-edged MAiD death family legacy: A qualitative descriptive study. BMJ Supportive and Palliative Care. Advance online publication. https://doi.org/10.1136/bmjspcare-2020-002648
Gamondi, C., Pott, M., Forbes, K., & Payne, S. (2015). Exploring the experiences of bereaved families involved in assisted suicide in Southern Switzerland: A qualitative study. BMJ Supportive and Palliative Care, 5(2), 146–152. https://doi.org/10.1136/bmjspcare-2013-000483
Ganzini, L., Goy, E. R., & Dobscha, S. K. (2008). Why Oregon patients request assisted death: Family members’ views. Journal of General Internal Medicine, 23(2), 154–157. https://doi.org/10.1007/s11606-007-0476-x
Goldberg, R., Nissim, R., An, E., & Hales, S. (2021). Impact of medical assistance in dying (MAiD) on family caregivers. BMJ Supportive and Palliative Care, 11, 107–114. https://doi.org/10.1136/bmjspcare-2018-001686
Hales, B. M., Ford, B., Bean, S., Isenberg-Grzeda, E., & Selby, D. (2019). Improving the medical assistance in dying (MAID) process: A qualitative study of family caregiver perspectives. Palliative & Supportive Care, 17(5), 590–595. https://doi.org/10.1017/S147895151900004X
Harvath, T. A., Miller, L. L., Smith, K. A., Clark, L., Jackson, A., & Ganzini, L. (2006). Dilemmas encountered by hospice workers when patients wish to hasten death. Journal of Hospice & Palliative Nursing, 8(4), 200–209. https://dx.doi.org/10.1097/00129191-200607000-00011
Haun, M. W., Estel, S., Rücker, G., Friederich, H. C., Villalobos, M., Thomas, M., & Hartmann, M. (2017). Early palliative care for adults with advanced cancer. The Cochrane Database of Systematic Reviews, 6(6), CD011129. https://doi.org/10.1002/14651858.CD011129.pub2
Health Canada (2023). Fourth annual report of medical assistance in dying in Canada. Fourth annual report on Medical Assistance in Dying in Canada 2022 - Canada.ca
Health Canada (2024). Medical assistance in dying: Overview, 2024. Medical assistance in dying: Overview - Canada.ca
Hoerger, M., Greer, J. A., Jackson, V. A., Park, E. R., Pirl, W. F., El-Jawahri, A., Gallagher, E. R., Hagan, T., Jacobsen, J., Perry, L. M., & Temel, J. S. (2018). Defining the elements of early palliative care that are associated with patient-reported outcomes and the delivery of end-of-life care. Journal of Clinical Oncology, 36(11), 1096–1102. https://doi.org/10.1200/JCO.2017.75.6676
Holmes, S., Wiebe, E. R., Shaw, J., Nuhn, A., Just, A., & Kelly, M. (2018). Exploring the experience of supporting a loved one through a medically assisted death in Canada. Canadian Family Physician, 64(9), e387–e393.
Liang, Y., Hao, G., Wu, M., & Hou, L. (2022). Social isolation in adults with cancer: An evolutionary concept analysis. Frontiers in Psychology, 13, 973640. https://doi.org/10.3389/fpsyg.2022.973640
Maloney, Lyons, K. D., Li, Z., Hegel, M., Ahles, T. A., & Bakitas, M. (2013). Patient perspectives on participation in the ENABLE II randomized controlled trial of a concurrent oncology palliative care intervention: Benefits and burdens. Palliative Medicine, 27(4), 375–383. https://doi.org/10.1177/0269216312445188
Maltoni, M., Scarpi, E., Dall’Agata, M., Zagonel, V., Bertè, R., Ferrari, D., Broglia, C. M., Bortolussi, R., Trentin, L., Valgiusti, M., Pini, S., Farolfi, A., Casadei Gardini, A., Nanni, O., Amadori, D., & Early Palliative Care Italian Study Group (EPCISG) (2016). Systematic versus on-demand early palliative care: Results from a multicentre, randomised clinical trial. European Journal of Cancer, 65, 61–68. https://doi.org/10.1016/j.ejca.2016.06.007
Maltoni, M., Caraceni, A., Klepstad, P., & Rossi, R. (2023). Early palliative care for cancer patients [Editorial]. Frontiers in Oncology, 13(1207587). https://doi.org/10.3389/fonc.2023.1207587
NEJM Catalyst (2017). What is patient-centered care? The New England Journal of Medicine, What Is Patient-Centered Care? | NEJM Catalyst
Odagiri, T., Morita, T., Aoyama, M., Kizawa, Y., Tsuneto, S., Shima, Y., Miyashita, M., & J-HOPE Group (2018). Families’ sense of abandonment when patients are referred to hospice. The Oncologist, 23(9), 1109–1115. https://doi.org/10.1634/theoncologist.2017-0547
Pratt-Chapman, M. (2018). Quality cancer care. In: L. Shockney (Eds.), Team-based oncology care: The pivotal role of oncology navigation (pp 43–62). Springer, Cham. https://doi.org/10.1007/978-3-319-69038-4_3
Patel, P., & Lyons, L. (2020). Examining the knowledge, awareness, and perceptions of palliative care in the general public over time: A scoping literature review. American Journal of Hospice and Palliative Medicine, 37(6), 481–487. https://doi.org/10.1177/1049909119885899
Quill, T.E., & Abernathy A. P. (2013). Generalist plus specialist palliative care- Creating a more sustainable model. New England Journal of Medicine, 368(13), 1173-1175.
Snijdewind, M. C., Van Tol, D. G., Onwuteaka-Philipsen, B. D., & Willems, D. L. (2014). Complexities in euthanasia or physician-assisted suicide as perceived by Dutch physicians and patients’ relatives. Journal of Pain and Symptom Management, 48(6), 1125–1134. https://doi.org/10.1016/j.jpainsymman.2014.04.016
Temel, J. S., Greer, J. A., Muzikansky, A., Gallagher, E. R., Admane, S., Jackson, V. A., Dahlin, C. M., Blinderman, C. D., Jacobsen, J., Pirl, W. F., Billings, J. A., & Lynch, T. J. (2010). Early palliative care for patients with metastatic non-small-cell lung cancer. The New England Journal of Medicine, 363(8), 733–742. https://doi.org/10.1056/NEJMoa1000678
Temel, J. S., Greer, J. A., El-Jawahri, A., Pirl, W. F., Park, E. R., Jackson, V. A., Back, A. L., Kamdar, M., Jacobsen, J., Chittenden, E. H., Rinaldi, S. P., Gallagher, E. R., Eusebio, J. R., Li, Z., Muzikansky, A., & Ryan, D. P. (2017). Effects of early integrated palliative care in patients with lung and GI cancer: A randomized clinical trial. Journal of Clinical Oncology, 35(8), 834–841. https://doi.org/10.1200/JCO.2016.70.5046
Vanbutsele, G., Pardon, K., Van Belle, S., Surmont, V., De Laat, M., Colman, R., Eecloo, K., Cocquyt, V., Geboes, K., & Deliens, L. (2018). Effect of early and systematic integration of palliative care in patients with advanced cancer: A randomised controlled trial. The Lancet Oncology, 19(3), 394–404. https://doi.org/10.1016/S1470-2045(18)30060-3
Variath, C., Peter, E., Cranley, L., Godkin, D., & Just, D. (2020). Relational influences on experiences with assisted dying: A scoping review. Nursing Ethics, 27(7), 1501–1516. https://doi.org/10.1177/0969733020921493
World Health Organization (2020). WHO definition of palliative care. Palliative care (who.int)
Refbacks
- There are currently no refbacks.