Hostname: page-component-78c5997874-m6dg7 Total loading time: 0 Render date: 2024-11-19T15:15:29.720Z Has data issue: false hasContentIssue false
  • English
  • Français

Improving the Medical Assistance in Dying (MAID) process: A qualitative study of family caregiver perspectives

Published online by Cambridge University Press:  19 March 2019

Brigette M. Hales ,
Sally Bean ,
Elie Isenberg-Grzeda ,
Bill Ford  and
Debbie Selby
Brigette M. Hales*
Affiliation:
Department of Quality & Patient Safety, Sunnybrook Health Sciences Centre, Toronto, ON, Canada
Sally Bean
Affiliation:
Ethics Centre, Sunnybrook Health Sciences Centre, Toronto, ON, Canada Dalla Lana School of Public Health, University of Toronto, Toronto, ON, Canada
Elie Isenberg-Grzeda
Affiliation:
Odette Cancer Centre, Sunnybrook Health Sciences Centre, Toronto, ON, Canada Department of Psychiatry, University of Toronto, Toronto, ON, Canada
Bill Ford
Affiliation:
Department of Spiritual & Religious Care, Sunnybrook Health Sciences Centre, Toronto, ON, Canada
Debbie Selby
Affiliation:
Department of Family & Community Medicine, University of Toronto, Toronto, ON, Canada
*
Author for correspondence: Brigette M. Hales, M.Sc., Director, Quality & Patient Safety, Sunnybrook Health Sciences Centre, 2075 Bayview Avenue, H238, Toronto, Canada M4N 3M5. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective

The road to legalization of Medical Assistance in Dying (MAID) across Canada has largely focused on legislative details such as eligibility and establishment of regulatory clinical practice standards. Details on how to implement high-quality, person-centered MAID programs at the institutional level are lacking. This study seeks to understand what improvement opportunities exist in the delivery of the MAID process from the family caregiver perspective.

Method

This multi-methods study design used structured surveys, focus groups, and unstructured e-mail/phone conversations to gather experiential feedback from family caregivers of patients who underwent MAID between July 2016 and June 2017 at a large academic hospital in Toronto, Canada. Data were combined and a qualitative, descriptive approach used to derive themes within family perspectives.

Result

Improvement themes identified through the narrative data (48% response rate) were grouped in two categories: operational and experiential aspects of MAID. Operational themes included: process clarity, scheduling challenges and the 10-day period of reflection. Experiential themes included clinician objection/judgment, patient and family privacy, and bereavement resources.

Significance of results

To our knowledge, this is the first time that family caregivers’ perspectives on the quality of the MAID process have been explored. Although practice standards have been made available to ensure all legislated components of the MAID process are completed, detailed guidance for how to best implement patient and family centered MAID programs at the institutional level remain limited. This study provides guidance for ways in which we can enhance the quality of MAID from the perspective of family caregivers.

Keywords

Medical assistance in dyingPhysician-assisted deathFamily perspectiveQualitative researchQuality improvement
Type
Original Article
Information
Palliative & Supportive Care , Volume 17 , Issue 5 , October 2019 , pp. 590 - 595
Copyright
Copyright © Cambridge University Press 2019 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Bate, SP and Robert, G (2016) Experience-based design: From redesigning the system around the patient to co-designing services with the patient. Quality & Safety in Health Care 15, 307–310.10.1136/qshc.2005.016527Google Scholar
Bradley, EH, Crurry, LA, Ramanadhan, S (2009) Research in action: Using positive deviance to improve quality of health care. Implementation Science 4, 25–36.10.1186/1748-5908-4-25Google Scholar
Bridge C-14 (2018) Ottawa, Ontario. Available from https://www.bridgec14.org/resourcesGoogle Scholar
Death with Dignity (2018) Portland, Oregon. Resources. Available from https://www.deathwithdignity.org/learnGoogle Scholar
Dewar, B, Mackay, R, Smith, S, et al. (2010) Use of emotional touchpoints as a method of tapping into the experience of receiving compassionate care in a hospital setting. Journal of Research in Nursing 15, 29–41.10.1177/1744987109352932Google Scholar
Dignitas (2017) Switzerland. Seventh report on quality control of DIGNITAS’ services in relation to accompanied suicide.Google Scholar
Dignitas (2018) Forch, Switzerland. Available from: www.dignitas.chGoogle Scholar
Dying with Dignity Canada (2015) Toronto. Get the facts: Bill C-14 and assisted dying law in Canada. Available from: http://www.dyingwithdignity.ca/get_the_facts_assisted_dying_law_in_canadaGoogle Scholar
Emanuel, IJ, Onwuteaka-Philipsen, BD, Unwin, JW, et al. (2016) Attitudes and practices of euthanasia and physician-assisted suicide in the United States, Canada and Europe. Journal of the American Medical Association 316, 79–90.10.1001/jama.2016.8499Google Scholar
Gamondi, C, Pott, M, Forbes, K, et al. (2015) Exploring the experiences of bereaved families involved in assisted suicide in Southern Switzerland: A qualitative study. BMJ Supportive & Palliative Care 5, 146–152.10.1136/bmjspcare-2013-000483Google Scholar
Gamondi, C, Pott, M, Preston, N, et al. (2018) Family caregivers' reflections on experiences of assisted suicide in Switzerland: A qualitative interview study. Journal of Pain & Symptom Management 55, 1085–1109.10.1016/j.jpainsymman.2017.12.482Google Scholar
Ganzini, L, Goy, ER, Dobscha, SK (2008) Why Oregon patients request assisted death: Family members' views. Journal of General Internal Medicine 23, 154–157.10.1007/s11606-007-0476-xGoogle Scholar
Harrop, E, Morgan, F, Byrne, A, et al. (2016) “It still haunts me whether we did the right thing”: A qualitative analysis of free text survey data on the bereavement experiences and support needs of family caregivers. BMC Palliative Care 8(15), 92.10.1186/s12904-016-0165-9Google Scholar
Holmes, S, Wiebe, E, Shaw, J, et al. (2018) Exploring the experience of supporting a loved one through a medically assisted death in Canada. Canadian Family Physician 64, e387–e393.Google Scholar
Lee, W, Price, A, Rayner, L, et al. (2009) Survey of doctors’ opinions of the legalization of physician assisted suicide. BMC Medical Ethics 10, 2.10.1186/1472-6939-10-2Google Scholar
Loggers, ET, Starks, H, Shannon-Dudley, , et al. (2013) Implementing a Death with Dignity program at a comprehensive cancer center. New England Journal of Medicine 368, 1417–1424.10.1056/NEJMsa1213398Google Scholar
Nuhn, A, Holmes, S, Kelly, M, et al. (2018) Experiences and perspectives of people who pursued medical assistance in dying: Qualitative study in Vancouver, BC. Canadian Family Physician 64, e380–e386.Google Scholar
Pope, C, Ziebland, S, Mays, N (2000) Qualitative research in health care: Analysing qualitative British Medical Journal 320, 114–116.10.1136/bmj.320.7227.114Google Scholar
Right to Die – Europe (2018) Netherlands. Available from: http://www.rtde.euGoogle Scholar
Right to Die – Netherlands (2018) Amsterdam. Available from: https://www.nvve.nl/Google Scholar
Ryan, GW and Bernard, HR (2003) Techniques to Identify Themes. Field Methods 15, 85.10.1177/1525822X02239569Google Scholar
Sadler, E, Hales, B, Xiong, W, et al. (2014) Factors affecting family satisfaction with inpatient end-of-life care. PLOS ONE 9, e11086010.1371/journal.pone.0110860Google Scholar
Sandelowski, M (2000).Whatever happened to qualitative description? Research in Nursing & Health 23, 334–340.10.1002/1098-240X(200008)23:4<334::AID-NUR9>3.0.CO;2-G3.0.CO;2-G>Google Scholar
Shaw, J, Wiebe, E, Nuhn, A, et al. (2018) Providing medical assistance in dying: Practice perspectives. Canadian Family Physician 64, e394–e399.Google Scholar
Smith, KA, Harvath, TA, Goy, ER, et al. (2015) Predictors of pursuit of physician-assisted death. Journal of Pain & Symptom Management 49, 555–561.10.1016/j.jpainsymman.2014.06.010Google Scholar
Swarte, NB, van der Lee, ML, van der Bom, JG, et al. (2003) Effects of euthanasia on the bereaved family and friends: A cross sectional study. British Medical Journal 327, 189–194.10.1136/bmj.327.7408.189Google Scholar
Teno, JM, Casey, VA, Welch, LC, et al. (2001) Patient-focused, family-centered end-of-life medical care: Views of the guidelines and bereaved family members. Journal of Pain & Symptom Management 22, 738–751.10.1016/S0885-3924(01)00335-9Google Scholar
Wiebe, E, Shaw, J, Green, S, et al. (2018) Reasons for requesting medical assistance in dying. Canadian Family Physician 64, 674–679.Google Scholar