Feb 24, 2020, By: Amy McLeod
Take away messages
- The earlier nurses start the conversation on palliative care, the more meaningful, person-centered, and individualized values-driven care you can provide.
- LTC staff are ideally positioned to facilitate meaningful, timely conversations on advance directives and end-of-life care with residents and their families, but need the competence, support, and tools to do this.
- A cultural shift in how we talk about death and dying is required to facilitate acceptance and understanding of what palliative care is and how it can improve people’s lives.
As Canada’s population ages, more older adults are living and dying in LTC facilities. According to the 2016 Canadian Census, 6.8% of the population aged 65 years and older were living in LTC; this figure jumps to 30.0% among Canadians aged 85 years and older, with over 90% of those admitted having a life-limiting diagnosis (Garner, Tanuseputro, Manuel, & Sanmartin, 2018).
The importance and benefits of a palliative approach to care for those with life-limiting diagnoses is well documented. In 2018, the Government of Canada published the Framework on Palliative Care in Canada, the culmination of a cross-country collaboration investigating the state of palliative and end-of-life care. In it, then-Minister Ginette Petitpas Taylor stated that “a cultural shift in how we talk about death and dying is required to facilitate acceptance and understanding of what palliative care is and how it can positively impact people’s lives” (Government of Canada, 2018).
The World Health Organization (WHO) defines palliative care as an approach that improves the quality of life of persons and their families facing the problems associated with a life-limiting illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, including physical, psychosocial, and spiritual (Government of Canada, 2018). Of the total number of Canadians over the age of 18 who die each year, 90% die from a chronic illness, such as cancer, heart disease, organ failure, dementia, Parkinson’s disease, or multiple sclerosis (Government of Canada, 2018).
A natural assumption might be that LTC staff are accustomed to having end-of-life conversations with residents and their families. Yet, Durepos and colleagues (2018) report that end-of-life communications in LTC are inadequate and delayed, leaving residents to die with their preferences and documented goals of care unknown.
Kunte, Johansen, and Isenberg-Cohen (2017) support this finding, noting that LTC staff are inadequately prepared to initiate discussions on end-of-life care. The academic literature indicates that poor communication with staff contributes to families’ feeling unprepared, distressed, and dissatisfied with care (Durepos et al., 2018).
The WHO has called for a systems approach to palliative care for older adults, which will enable caregivers to share in an ultimately human experience by showing genuine interest in their experiences and provide whole-person, value-driven palliative care (Gilissen et al., 2017). For this to occur, we must bridge the gap between knowledge and practice.
This paper shares my experiences as Acting Director of Care (ADoC) and project lead while working at Central Carleton Nursing Home (CCNH), a LTC facility in rural New Brunswick during our participation in a national pilot project conducted through the Canadian Foundation for Healthcare Improvement (CFHI, 2019). The project, “Embedding Palliative Approaches to Care (EPAC),” was designed to address the gap between knowledge and practice with a palliative approach to care in a LTC setting.
The WHO has called for a systems approach to palliative care for older adults, which will enable caregivers to share in an ultimately human experience by showing genuine interest in their experiences and provide whole-person, value-driven palliative care.
Anecdotal evidence gleaned from conversations with staff, and my observations upon assuming the position of ADoC in the facility, reflected the findings in the literature that many LTC staff felt awkward and unprepared to initiate discussions concerning end-of-life issues (Durepos et al., 2018; Gilissen et al., 2017; Kunte, Johansen, & Isenberg-Cohen, 2017).
Advance health care directives (AHCDs) are addressed upon admission to the home via a multiple-choice document signed by the resident or power of attorney and co-signed by the home’s physician. Options include full CPR with transfer to an acute care hospital, no CPR but transfer to an acute care hospital if required, and comfort care only with no transfer.
AHCDs are reconfirmed annually during a multidisciplinary resident review meeting or with a significant change in a resident’s condition. Although the directives are an important component of residents’ medical records, they do not indicate the appropriate palliative care measures a resident desires, nor does the process facilitate meaningful conversation regarding the resident’s values, beliefs, and wishes for end of life.
Recognizing the gap in true person-centred care at CCNH, the administrative team asked to participate in the EPAC pilot project as one of five LTC facilities comprising the provincial team under the New Brunswick Association of Nursing Homes. The EPAC collaborative reflects the beliefs described by Gilissen and colleagues (2017), where AHCD discussions should be part of an ongoing conversation that incorporates realistic estimates of disease prognosis, overall goals of care, realistic benefits and consequences of interventions, as well as cultural, spiritual, and ethical values that underlie decision-making.
… many LTC staff felt awkward and unprepared to initiate discussions concerning end-of-life issues …
During our work in developing the EPAC initiative, it became crucial that the planning team establish some general and consistent definitions for this culture change project. The following definitions were highlighted throughout the process:
- Advance care planning is the process of reflection and communication that a person goes through to let others know their future health and personal care preferences (Government of Canada, 2018).
- Goals of care express the general aim or focus of care. Clinical and other goals for a person’s care are determined in a shared decision-making process that should include treatment of the illness and/or symptom management. In some cases, they include limits on the interventions that people want, such as “do not resuscitate” orders (Government of Canada, 2018).
- An integrated palliative approach to care focuses on meeting a person’s and family’s full range of needs, including physical, psychosocial, and spiritual needs, at all stages of a chronic progressive illness. It reinforces the person’s autonomy and right to be actively involved in their own care, and strives to give individuals and families a greater sense of control, focusing particularly on open and sensitive communication about the person’s prognosis, advance care planning, and physical, psychosocial, and spiritual support (Government of Canada, 2018).
Highlights of the project
CFHI focuses on spreading proven innovations that deliver better care closer to home. EPAC’s initial implementation in 48 LTC homes across Vancouver Coastal Health succeeded in enabling residents to receive improved end-of-life care at home, avoiding unnecessary hospital transfers, and it supported all stakeholders through the experience (CFHI, 2019).
Using a train-the-trainer approach, the EPAC model was spread into 22 LTC facilities via seven participating teams, across five provinces and one territory during the period from June 2018 to November 2019 (CFHI, 2019).
As one of the homes participating in this initiative, CCNH staff had access to an implementation process that included education, resources, tools, technical support, and team and individual trainer support. Our facility also had access to a CFHI website containing all resources, contacts, and results of the initiative. The metrics tracked were number of deaths, number of residents with a documented conversation about goals of care, preferred location of death, and number of transfers to an acute care facility with or without admission in the last three months of life.
As our home is a small (30-bed) facility with limited financial and human resources, I, as Acting Director of Care, was identified as the project lead with full support from the administrator. Having the resources and support of CFHI’s team was wonderful, but now this knowledge needs to be shared with the staff, residents, families, and community and care partners in our home.
Following Lewin’s Change Management Theory, I will review this culture change process via three stages: unfreezing (when change is needed), moving (when change is initiated), and refreezing (when equilibrium is established).
All participating teams of the pilot project received a small financial incentive to help cover costs. We used this funding to assist in educating 25% of our care staff to obtain LEAP-LTC (Learning Essential Approaches to Palliation) certification. This nationally recognized, two-day course through Pallium Canada is intended to build palliative team capacity within LTC facilities. The course provided staff with improved knowledge to support the implementation of EPAC. Also included in this team are resident, family, volunteer, and pastoral representatives.
To effect a true and lasting culture change, the understanding, participation, and belief in the approach to care must come from all sectors. Education/information sessions were held for staff, residents, families, and the pastoral care support team, and were also opened to the local community.
Rather than trying to make one all-encompassing process change, we decided to incorporate smaller changes to make the process less daunting. Highlights of some of these actions include the following:
- During our weekly team meetings for care plan review, we identify concerns about the resident’s symptoms using a palliative lens, consistent terminology, and frailty indicators (e.g., she does not seem to have an interest in food anymore, he is losing weight, this is her third infection this year, he sleeps more often).
- Small group education sessions teach techniques for initiating end-of-life communication using the resources provided through CFHI.
- Identify policy and process changes required to support the culture change (e.g., admission process, communication process between departments).
- Identify residents at risk of dying in the next 6 months and book family goals of care meetings.
- Changed multidisciplinary resident review meeting format to become a goals of care conversation.
Currently, the administrative team has so far facilitated the conversations regarding goals of care. More education and simulation with end-of-life conversations are required to increase the staff’s comfort level with initiating and communicating the results of these conversations.
We have not yet reached this stage of the process. We have many processes to adapt to a palliative, person-centered approach. Having only one person, who has other full-time responsibilities, trained to implement the requirements for a successful change initiative has made progress slow.
Conversations about death and dying do not happen only at pre-arranged times with certain staff. They can happen in the middle of the night with care staff, during the day with cleaning staff, during meals with dietary, and/or during scheduled activities. As such, all members of the team, not just nursing, play an important role. For this reason, it is important to provide education and implement processes for dissemination of resident conversations.
We have had successes and setbacks since the beginning of our participation in EPAC. All members of our multidisciplinary team have been open to the process.
We have been able to identify and target goals of care with all residents and/or their families except one. That resident’s condition changed quickly, and we were not prepared because it was early in our change process. As a result, the resident had an unnecessary trip to the emergency department 72 hours prior to passing away.
We had an impromptu honour guard with one resident’s passing, which that resident’s family, our staff, and many residents found meaningful. However, several other residents and families who heard about the honour guard were upset, not understanding that an honour guard would be provided only if listed in their documented goals of care. Advance communication might have helped this situation.
A difficulty encountered through this process is finding the time required for staff education and policy/procedure revisions. One piece of advice I recommend is to have lateral leadership in the change project. This can offset the workload and help prevent the initiative from stagnating because of conflicting demands on the project lead.
We have had favourable feedback from our residents and families since incorporating EPAC. The response includes deep and heartfelt gratitude for the care and facilitated time together at the end of life with their loved ones.
We are grateful to have had the opportunity to participate in the EPAC initiative through CFHI. We knew there was a gap between the quality of care we wanted to provide and how we were practicing. Incorporating a palliative approach into the care culture at our home has provided us with opportunities to care for our residents in a more meaningful, individualized, respectful way.
Staff are gaining the comfort and competence to lead those difficult conversations that are an inherent part of the job, and we are providing an environment where our residents are living the fullest life possible and dying knowing their wishes are being respected.
Canadian Foundation for Healthcare Improvement. (2019). Embedding Palliative Approaches to Care Spread Collaborative.
Durepos, P., Kaasalainen, S., Sussman, T., Parker, D., Brazil, K., Mintzberg, S., & Te, A. (2018). Family care conferences in long-term care: Exploring content and processes in end-of-life communication. Palliative and Supportive Care, 16(5), 590–601. doi:10.1017/s1478951517000773
Garner, R., Tanuseputro, P., Manuel, D. G., & Sanmartin, C. (2018). Transitions to long-term and residential care among older Canadians. Health Reports, 29(5), 13–23.
Gilissen, J., Pivodic, L., Smets, T., Gastmans, C., Vander Stichele, R., Deliens, L., & Van den Block, L. (2017). Preconditions for successful advance care planning in nursing homes: A systematic review. International Journal of Nursing Studies, 66, 47–59. doi:10.1016/j.ijnurstu.2016.12.003
Government of Canada. (2018). Framework on palliative care in Canada. Ottawa: Health Canada.
Kunte, V., Johansen, M. L., & Isenberg-Cohen, S. (2017). Improving long-term care residents’ outcomes by educating nursing staff on end-of-life communication. Journal of Hospice & Palliative Nursing, 19(6), 550–555. doi:10.1097/NJH.0000000000000386
Amy McLeod, RN BN, MHS, ENC©, GNC© has 34 years of direct care experience, including 18 years in emergency nursing. For the past three years she has worked in long-term care. She is passionate about geriatric nursing and nursing's role in bringing a palliative approach to care to those with a life limiting diagnosis.