Grace Johnston

Background: Persons from a Christian tradition may have concerns that impede advance care planning for end of life. Sharing how Jesus practiced advance care planning may provide a pivot point to help ameliorate this problem. Objective: To present a novel approach to advance care planning from a Christian tradition. Evolution of the Novel Approach: Experiential learning that resulted in the novel approach is described using Kolb's learning cycle: proceeding from concrete experience to reflective observation followed by abstract conceptualization and then active experimentation. Results: The novel approach builds on events toward the end of Jesus' life to demonstrate how he practiced advance care planning: telling those close to him that he was going to die even though they did not want to hear this, participating in a celebration of his life on Palm Sunday, sharing a Last Supper with those close to him, showing them how he wanted to be remembered, asking his friends to pray with him in the garden of Gethsemane, and saying to his mother that John would care for her. Questions related to these events are posed for use by health and spiritual care professionals to innovatively engage persons in advance care planning. Discussion: This approach might be adapted for persons of other religious traditions by exploring their sacred teachings. It is proffered for others to explore, adapt, and evaluate for its utility in initiating and facilitating advance care planning.

Au Canada, la navigation des patients atteints de cancer a vu le jour en Nouvelle-Écosse, en 2002, à l’instigation d’infirmières en oncologie ayant décidé de soutenir les patients du diagnostic au décès. La présente étude voulait déterminer la fréquence (et la variation de fréquence) des services de navigation et de contacts pour soins palliatifs chez les adultes décédés entre 2011 et 2014 après avoir reçu un diagnostic de cancer ainsi que des services de navigation. Parmi les 2 532 sujets de l’étude, 56,7 % ont bénéficié de services de navigation pendant plus d’un mois et 30,6 % ont eu un contact pour soins palliatifs. Certaines variations ont été observées entre les régions géographiques, les stades de cancer, le temps écoulé entre le diagnostic et le décès, et la cause du décès (attribuable ou non au cancer). Il serait bon d’étudier plus en détail le rôle de la navigation pour les personnes en fin de vie.

Population surveillance of navigation frequency and palliative care contact before death among cancer patients

Au Canada, la navigation des patients atteints de cancer a vu le jour en Nouvelle-Écosse, en 2002, à l’instigation d’infirmières en oncologie ayant décidé de soutenir les patients du diagnostic au décès. La présente étude voulait déterminer la fréquence (et la variation de fréquence) des services de navigation et de contacts pour soins palliatifs chez les adultes décédés entre 2011 et 2014 après avoir reçu un diagnostic de cancer ainsi que des services de navigation. Parmi les 2 532 sujets de l’étude, 56,7 % ont bénéficié de services de navigation pendant plus d’un mois et 30,6 % ont eu un contact pour soins palliatifs. Certaines variations ont été observées entre les régions géographiques, les stades de cancer, le temps écoulé entre le diagnostic et le décès, et la cause du décès (attribuable ou non au cancer). Il serait bon d’étudier plus en détail le rôle de la navigation pour les personnes en fin de vie.

Background: Cancer-patient navigators who are oncology nurses support and connect patients to resources throughout the cancer care trajectory, including end of life. Although qualitative and cohort studies of navigated patients have been reported, no population-based studies were found. The present population-based study compared demographic, disease, and outcome characteristics for decedents who had been diagnosed with cancer by whether they did or did not see a navigator. Methods: This retrospective study used patient-based administrative data in Nova Scotia (cancer registry, death certificates, navigation visits) to generate descriptive statistics. The study population included all adults diagnosed with cancer who died during 2011–2014 of a cancer or non-cancer cause of death. Results: Of the 7694 study decedents, 74.9% had died of cancer. Of those individuals, 40% had seen a navigator at some point in their disease trajectory. The comparable percentage for those who did not die of cancer was 11.9%. Decedents at the oldest ages had the lowest navigation rates. Navigation rates, time from diagnosis to death, and time from last navigation visit to death varied by disease site. Conclusions: This population-based study of cancer-patient navigation enrolees compared with non-enrolees is the first of its kind. Most findings were consistent with expectations. However, we do not know whether the rates of navigation are consistent with the navigation needs of the population diagnosed with cancer. Because more people are living longer with cancer and because the population is aging, ongoing surveillance of who requires and who is using navigation services is warranted.

This study sought to develop frailty “identification rules” using population-based health administrative data that can be readily applied across jurisdictions for living and deceased persons. Three frailty identification rules were developed based on accepted definitions of frailty, markers of service utilization, and expert consultation, and were limited to variables within two common population-based administrative health databases: hospital discharge abstracts and physician claims data. These rules were used to identify persons with frailty from both decedent and living populations across five Canadian provinces. Participants included persons who had died and were aged 66 years or older at the time of death (British Columbia, Alberta, Ontario, Quebec, and Nova Scotia) and living persons 65 years or older (British Columbia, Alberta, Ontario, and Quebec). Descriptive statistics were computed for persons identified using each rule. The proportion of persons identified as frail ranged from 58.2-78.1 per cent (decedents) and 5.1-14.7 per cent (living persons).

Background: Screening and treatment for breast cancer have improved. However, attention to palliative support and non-cancer co-morbidities has been limited. This study identified types of care for and co-morbidities of persons dying of breast cancer compared to persons dying from all cancers and from non-cancer causes. Methods: Linked administrative data from population-based registries were used to examine 121,458 deaths in Nova Scotia from 1995 to 2009. Results: Breast cancer decedents' mean age was similar to that of all cancer decedents (72.0 versus 72.1 years), but their age spread was greater (20–59 years: 23.1% versus 16.7%; 90+ years: 11.2% versus 6.5%). Among women dying of breast cancer, 15.6% were enrolled in the diabetes registry and 15.1% in the cardiovascular registry, indicating that they had these non-cancer conditions prior to their death. Compared to all cancer decedents, breast cancer decedents were twice as likely to have dementia as a cause of death, and were less likely to die in hospital but more likely to die in a nursing home. Breast cancer decedents had place of death rates more similar to non-cancer than cancer decedents. Conclusions: Rates of dementia and diabetes among the breast cancer decedents were particularly note-worthy in this novel study given that these comorbidities have not received much attention in the breast cancer research literature. Further collaboration with non-cancer disease programs is advised. The extent of adequate comprehensive palliative support for the 20% of the breast cancer decedents who are nursing home residents requires investigation.

Background: Fulfillment of patient preferences for location of dying is of continued end-of-life care interest. Of those voicing a preference, most prefer home. However the majority of deaths occur in an institutional setting. Objectives: The study objective was to report on the congruence between the last preferred and actual location of death among adult Nova Scotians who died from chronic disease, and to identify individual, illness-related, and environmental factors associated with achieving a preferred home death. Methods: The study employed a population-based mortality follow-back telephone survey interview. Subjects were eligible death certificate identified informants (next-of-kin) of adults (aged 18+) (n = 1316) who died of advanced chronic diseases in the Canadian province of Nova Scotia between June 2009 and May 2011 who were knowledgeable about the decedent's care over the last month of life. Congruence was assessed as to whether or not the decedent died in their preferred death location. Among decedents preferring a home death, individual, illness-related, and environmental risk factor multivariable analyses were used to identify predictors of home death achievement. Results: Among all who voiced a preference (n = 606), 52% died in their preferred location (kappa: 0.29). Factors contributing independently to achievement of a preferred home death were emotional needs being met, nursing and family physician home visits, palliative care program involvement, and being at home for the majority of the last month. Conclusions: This study identifies elements of primary and integrated care that address the gap between preferred and actual place of care.

RRH: Rural and Remote Health. Published article number: 3134 - Examining palliative care program use and place of death in rural and urban contexts: a Canadian population-based study using linked data