Jul 02, 2019, By: Pauline Therrien , Michelle Pothier
“We are involved with a lot of death in our job. I have seen too many bad deaths. The MAID [deaths] I have been involved in are the best … , most peaceful, and supported deaths I can imagine.” (Anonymous community health nurse, 2018)
What We Learned
- When dealing with such an emotionally charged topic as MAID, it is important to reach out to and learn from front-line staff.
- Producing educational materials does not ensure dissemination of the information. Developing even the best educational program for supervisors/trainers does not guarantee it will reach the front line.
- Nurses must be offered focused support after a MAID visit. Nurses truly appreciate the post-visit support from a supervisor, and we highly recommend one-on-one communication following every MAID visit.
As more Canadians suffering from terminal illness choose to stay at home, community health nurses (CHNs) play a key role in supporting these clients. With the passing of Bill C-14 in June 2016 came new responsibilities for CHNs (Sheridan, 2017). CHNs are now asked to care for clients who choose to receive medical assistance in dying (MAID) at home. Introducing MAID to the already challenging practice of home care adds another layer of complexity to the CHN’s role. CHNs work independently; they work in remote areas, often with reduced supports in place (Schiller, 2017). Providing MAID in the home presents unique challenges, from working alone with lack of backup (for example, when having difficulty accessing a vein) to lack of available supplies.
As nursing leaders at a national home healthcare agency, we asked ourselves how MAID would affect CHNs and what we would need to do to support them. A literature search revealed that very little existed around support specifically for nurses participating in MAID. We set out to develop a plan for MAID policy and education. Our new evidence-informed MAID policy covered everything that nurses and supervisors need to know to work within the legislation and safely provide care to a MAID client. Our newly created in-house education program clarified the policy in a train-the-trainer format. This education was delivered to supervisors with the intent that it would be rolled out to all nurses.
Later, we wondered how CHNs were coping with this new practice. Were supervisors doing enough to support them? It was important for us to see whether our policy and education initiatives were effective. To answer our questions, we needed to hear from the nurses.
We established a plan to gain insight from nurses within our organization. What was working well, and where were the gaps?
This study rolled out in two phases. Initially, nurses were asked to submit a description of their MAID experiences. Flyers were distributed to our offices across Ontario, and managers were asked to share these with all CHNs who had participated in MAID. Participants were informed that our goal was to gain an understanding about their experiences with MAID in order to evaluate current processes and assess the need for changes to education and/or policy.
Submissions came in the form of informal phone calls and emails. Eight nurses responded with stories about their MAID experiences. They shared compelling accounts that raised good points. Some shared profoundly positive experiences:
“I was so grateful to be a part of such a wonderful thing for this client, that he could make that choice for himself when he had been so helpless for so long.”
“A great blue heron flew beside my car as I left her home; it was like a sign she was at peace and wanted me to know she was free.”
On the other hand, some experiences were not positive:
“I couldn’t sleep, of course; I tossed and turned. … I woke the next morning exhausted, mentally and physically.”
“I never heard from anyone at the office; no one reached out and asked me how it went. … it was as if it never happened.”
It was clear that the impact of going into a home to assist a provider with MAID cannot be taken lightly. There is a difference between starting an IV for a dose of antibiotics and starting one that will be used to provide MAID. We need to support our nurses before, during, and after MAID.
These stories prompted more questions. Why were some experiences so positive while others were unsettling? The stories the nurses shared had overlapping themes. Interestingly, the nurses who expressed their MAID experiences as being positive mentioned that they felt well supported. The nurses whose stories were not as positive expressed a lack of support and a stated lack of confidence in their role. Participants commented on the education that they did or did not receive.
Although only eight stories were received, this provided enough information to guide the development of a survey to delve deeper into the matter. The survey questions revolved around three themes that came up in the stories: our in-house education, the nurse’s confidence level, and support received. All nurses within the organization who had participated in MAID were invited to complete the survey. We wondered what was required to fully support a nurse through a MAID episode of care. We hypothesized: the more we support nurses, the more confident they would feel, resulting in a more positive experience for the nurse.
A total of 24 nurses from across Ontario completed the survey. The majority (80%) of these nurses reported having worked in the field for greater than 10 years and having previously completed additional palliative care education. Clearly, we were hearing the voices of experienced nurses.
Only 54% of respondents reported having received our in-house education. This was alarming to us because education had been provided to supervisors in a train-the-trainer format, with the expectation that it would be disseminated to the front-line nurses. Why wasn’t it shared with all nurses? Were nurses too busy to attend or supervisors too busy to teach? Was conscientious objection a factor? We are in the process of exploring reasons for this gap.
We were pleased to find that the majority of nurses (84%) stated they felt confident or very confident in understanding their role during the MAID visit. However, it was interesting to note that the nurses who reported low confidence had not completed in-house MAID education, thus stressing its importance.
Nurses all voiced feeling supported in their role by their supervisors, peers, and other care providers up until the MAID visit. In fact, the more support the nurse had received from different members of the healthcare team, the more positive the MAID experience was for the nurse. One nurse reported: “The support and guidance I received were excellent.” Interestingly, although the nurses reported feeling well supported prior to and during the MAID visit, that support was not as prominent after the MAID visit. Although the majority of the nurses felt relieved and/or happy for the client after MAID, some reported feeling unsettled, upset, and sad.
Of the few nurses who received support from their supervisor after the MAID case, this support was offered face-to-face or by phone, and in some instances via email only. Nurses clearly expressed they want to feel supported in MAID and need to speak to their supervisors after the MAID visit. They did not feel that an email from their supervisor was an effective method for supporting their needs after MAID.
The survey revealed that providing education and support for nurses participating in MAID results in increased confidence and positive experiences for the nurses. We learned that support comes in many forms, from education to having someone to talk to. In addition, the more support the nurses felt they received, the more confidence they expressed.
Based on study results, we updated our policy and education approach to implement clear guidelines around supporting staff and providing them with adequate education, including
- in-house MAID education for all new hires on orientation;
- a template for a MAID information package, available at all sites, that includes our policy and additional information to help the nurse prior to, during, and after the MAID visit; and
- a post-MAID debriefing tool that may serve as a guide for supervisors who may not “know what to say.”
Education and policy are the backbone needed for supervisors to support nurses in the field. We hope these changes will address that much-needed post-visit support.
Future steps to improve on this process:
- Follow up with supervisors to explore the barriers to teaching: Are they conscientious objectors? Do they have time? What can we do to help?
- Include MAID as a regular agenda item in corporate bi-monthly supervisor meetings.
- Support sites to set up peer support groups for nurses who work with MAID.
- Encourage sites to include MAID for discussion at their monthly staff meetings.
We plan to follow up with supervisors and nurses later this year to evaluate the impact of the changes implemented, and ultimately, to determine whether CHNs feel more supported.
Our most important lesson learned is never to treat a MAID case like a regular home visit and to remember that even the most experienced nurses need support.
Schiller, C. J. (2017). Medical assistance in dying in Canada: focus on rural communities. The Journal for Nurse Practitioners, 13(9), 628–634.
Sheridan, L. (2017). When patients ask to die: the role of nurses in medical assistance in dying. Retrieved from Electronic Thesis and Dissertation Repository.
Pauline Therrien, RN, BScN. Pauline is a national clinical consultant at ParaMed and has taken the lead with MAID since it was formally legalized in 2016. Pauline has been responsible for the development, review and revision of policies and education, focusing on clinical and home health content.</h6
Michelle Pothier, BN, RN, MN, CCHN(C). Michelle is a National Clinical Consultant at ParaMed and is responsible to provide leadership and direction to branch and corporate teams with respect to clinical competence, standards, policy and practice related to the delivery of care and services for patients.
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