New Knowledge and Research Needs for End-of-Life Care Among Elderly Persons in Long-Term Care Settings

In Quebec, as in other contemporary Western societies, death generally strikes at a late age, past 65 years of age, as is attested by the fact that four out of five deaths occur in this segment of the population. Moreover, the older a person is, the higher is the “probability” of dying³. This late mortality, often the result of a gradual decline, normally occurs in a care institution⁴, including long-term residential care centres (CHSLD – centres d’hébergement de soins de longue durée), where more than a third of residents die each year^{5, 6, 7}. Given the aging of the population, a dramatic increase in the number of deaths can be expected in the coming years⁸. This trend will also signify an increase in the number of persons affected by chronic and degenerative diseases, who will need long-term care and end-of-life care.

However, despite increasing political and social interest in Quebec concerning issues such as ‘dying with dignity’, regulating end-of-life care, and oversight of care practices, which led notably to the ‘Act respecting end-of-life care’ coming into force on 15 December 2015, the province of Quebec is significantly behind in ensuring that services are adequate to the needs of its aging population. Not only are the number of beds for home, hospital, and specialized care limited, there is an even greater deficiency with respect to long-term care facilities⁸. In fact, according to a report by Shang⁹ on palliative care in long-term care settings, end-of life care forms part of residents’ regular care pathway. In other words, it is not a distinct practice unto itself. Among all the settings investigated in 2013, none had a team dedicated to end-of-life care. Although the act respecting end-of-life care represents a turning point for care establishments, including CHLSDs, requiring them to adopt policies and programs for end-of-life care, individual institutions are free to organize their care environments as they wish.

The grey and scientific literature^{10, 11, 12, 13, 14, 15, 16} underlines the lack of end-of-life care for elderly people in long-term care centres. It points to lack of experience, education, and knowledge concerning end-of-life care, communication, and symptom relief as reasons for deficiencies in end-of-life care for elderly persons in institutional settings. According to studies by Nielsen and Glasdam¹¹ and Hopkinson, Hallett¹⁷, these explanations tend to sidestep the issue of organizational and structural problems within care establishments, especially long-term centres, whether in terms of care objectives, time pressures on operationalization of work, or lack of staff¹⁸. The culture of silence and of avoidance of the topic of death, which is encouraged in certain establishments¹⁰, might also contribute to deficiencies in end-of-life care.

The aim of the present study is to explore needs in terms of new knowledge and research on end-of-life care for elderly persons in long-term care settings, from the perspective not only of the scientific and international community, but also of Quebec professionals concerned by the issue.

An online survey using the LimeSurvey® tool was conducted from October 1st to December 31st, 2015, among health professionals, patient care attendants, nursing assistants, nurses, physicians, pharmacists, other healthcare practitioners, managers, and researchers involved in end-of-life care for elderly persons in long-term care settings in Quebec. To reach as many professionals as possible across Quebec, we circulated the survey in English and French to various groups, associations, professional orders and federations, as well as centres for research on aging, palliative care, and social gerontology. The survey was also advertised in several magazines, websites, and watch newsletters for healthcare professionals. It was aimed at all professionals concerned by end-of-life care for elderly persons in residential long-term care centres (CHSLD) or in assisted living residences.

The questionnaire used for the survey was constructed based on a review of the literature conducted to examine new knowledge and research needs identified by the international scientific community. The document search was conducted using the PubMed database to list articles published between 2003 and 2015, in English or in French, on the topic of end-of-life care in long-term care settings. The following keywords were used: “long-term care” or “nursing home” AND “palliative care” or “end-of-life care” or “terminal care.” The articles selected had to be from industrialized countries, such as Canada, the United States, Germany, Australia, Austria, Denmark, the United Kingdom, Ireland, France, Japan, Norway, New Zealand, the Netherlands, and Sweden. Based on a review of titles and abstracts, 175 articles covering end-of-life care for elderly persons in long-term care settings were selected.

Qualitative and thematic analysis of the discussion section of the selected articles was conducted to shed light on the needs identified by study authors in terms of new knowledge and research. These needs were divided into four broad categories: 1) needs related to health professionals; 2) needs related to delivery and quality of care; 3) needs related to residents and their loved ones; and finally 4) needs related to organization and management of care. After being identified and grouped into themes, the needs were expressed in the form of statements that could be used to construct the survey questionnaire.

The questionnaire consists of three sections. The first collects respondents’ demographic data, such as health region, professional category, and main work establishment. The second covers the four themes, divided into sets of at most 13 statements, for each of which respondents must indicate a level of priority (1 = low priority to 5 = high priority). The last section provides additional space to submit comments or to identify needs not included in the questionnaire.

The data were collected on the LimeSurvey® platform and analyzed statistically using the SPSS v. 19.0 (SPSS Inc., Chicago, ILS) data analysis software. Descriptive statistics were used to summarize the data. Each statement was tabulated under two categories representing level of priority, namely 1) the sum of percentages for levels of priority 4 and 5, and 2) the percentage for the highest level of priority, 5. The qualitative data from the questionnaire’s third section were summarized by the authors and grouped under corresponding theme.

Several participants who responded to the first section of the questionnaire on demographic data did not respond to the questions concerning new knowledge and research needs. They were not counted in the results.

The results show, on a general level, that the statements gathered from the scientific literature resonate among health professionals in Quebec. The majority of statements describing new knowledge and research needs were considered as a high priority ^{4, 5} by at least half of respondents.

The most pressing need is to identify distress symptoms, along with their causes and treatments, among end-of-life residents in long-term care settings. Close to 90% of respondents assessed this statement as being a high priority ^{4, 5}. Moreover, some respondents mentioned the need for new knowledge and research to develop clinical tools for evaluating clinical signs not only of comfort or pain, but also of end of life. These needs support observations made in Quebec regarding the increasing number of “very active” examinations and treatments carried out up until patient death. In fact, according the grey literature^{8, 19, 20}, recourse to acute care increases during the last weeks of life of dying persons, whether they are at home or already in an institution. The results of various studies^{12, 21} show that professionals across all categories are late in recognizing clinical signs of approaching death. Although some professionals claim they know “in their hearts”¹² that an elderly patient is nearing death, many seem to attempt to treat aggressively. The transfer of residents from a long-term care facility to an intensive care unit helps shore up the belief that medical expertise can be found in a different location¹²,¹⁶. According to Froggatt²² and Ternestedt and Franklin²³, palliative care in long-term care settings should be adapted to elderly persons, since the approach’s philosophy is not particularly suitable in such a context. Elderly persons who are likely to benefit from it are generally those with diseases other than cancer and whose prognosis involves a much less certain end-of-life trajectory^{14, 24, 25, 26, 27}.

This last point echoes the need for new knowledge and research related to evaluating training needs. More than 85% of respondents considered this, as a priority need. Other statements, related to lack of knowledge and education, support these needs. In fact, several respondents referred to this in their comments. Lack of experience, education, and knowledge regarding end-of-life care and symptom relief were generally pointed to as reasons for deficiencies encountered in end-of-life care provision for elderly people in institutions. According to some authors^{11, 28, 29, 30}, these care settings for elderly persons have difficulty in attracting and retaining care staff with significant university education¹¹,³¹,³². As a result, a large number of caregivers working on a daily basis with elderly persons have a lower level of education, which affects the care delivered to elderly persons at end of life. However, according to studies by Nielsen and Glasdam¹¹ and by Hopkinson, Hallett¹⁷, these explanations tend to sidestep the issue of organizational and structural problems in long-term care facilities, whether in terms of care objectives, time pressures on operationalization of work, or lack of staff¹⁸.

This study also shows respondents’ concerns with regard to new knowledge and research surrounding the attitudes and beliefs of the different actors involved in end of life (residents, family, professionals) in long-term care settings. Similar concerns applied to ethnic and cultural differences in understanding end of life. Indeed, there were numerous comments by respondents on this topic. End of life and death are extremely sensitive subjects that represent the end of human existence. In Western society, the omnipresent subject of death, far from being taboo, is paradoxically notable when it is absent. In 2016, although the majority of individuals died in care institutions^{4, 33}, end of life is often passed over in silence, something that Fortin and Blain³⁴ explain as a reflection of a larger “society that is uncomfortable with death” (p. 13).

Although it had not been among the needs identified in the scientific literature, a great number of survey respondents mentioned the need to explore understandings and meanings of end-of-life elements such as ‘dying in dignity’, ‘medically assisted dying’, ‘end-of-life care’ itself, and of representations concerning the use of certain pain relief drugs. This last element was also raised in a recent study by Lessard and Leclerc³⁵. The authors reported that the family members of dying people had social representations regarding the use of medication, notably morphine, to relieve pain, which they largely perceived as the “goodbye injection.” It goes without saying that the current political and social context surrounding dying in dignity has an impact.

The adoption and coming into force of the act respecting end-of-life care and the debates generated by the act in the media and in healthcare settings have greatly influenced the Quebec healthcare landscape. In the process, various issues related to ‘dying in dignity’ and to the act respecting end-of-life care, such as medically assisted dying and palliative sedation, have been widely reported on. Other elements, such as euthanasia and assisted suicide, have been brought into the discussion as well. The definitions, understandings, interpretations, and especially the meanings of these concepts vary significantly depending on the individual facing them and on the circumstances in which they arise. It is not surprising that so many survey respondents highlighted the need to clarify these themes.

In short, this study shows that there is a significant need for new knowledge and research. It revealed that there are few studies on end-of-life care for elderly persons in long-term care settings and that there is much more to be discovered in this field. This observation can also be related to the predominantly poor attitude that prevails in current society toward the elderly, and especially toward those in institutions, an attitude born from the association between old age and terminal illness^{29, 33, 36, 37}. The concept of the social loss of dying persons developed by Glaser and Strauss³⁸ might partly explain the generally uncaring attitude toward elderly persons in institutions. The social loss of a dying person relates to the social value assigned to the individual, a value that shapes how caregivers invest in that person and therefore affects the care provided. The most commonly observed attribute in this respect is probably age. According to the authors, the social loss of an elderly individual is considered less important than that of a younger individual. Given this lower level of social investment, we can consider that new knowledge and research needs are even more critical.

Finally, this study has some limitations. As enlightening as the results may be, the authors cannot claim that the sample is representative. As with other studies, the results could be coloured by self-selection bias. The survey respondents might represent persons who are more aware and more concerned by end-of-life care than others.

The priority percentages are fairly clustered, which makes it difficult to establish a clear order of priorities. It does suggest that respondents found it a challenge to select their own priorities. All in all, the concerns, needs, and beliefs of professionals with respect to end-of-life care in long-term care settings appear to be meaningful.

The authors express their heartfelt thanks to all the people who volunteered to disseminate the survey in their organization (Bulletin vieillissement, the Ordre des infirmières auxiliaires du Québec, the Fédération professionnelle des préposées aux bénéficiaires du Québec, the Centre de recherche et d’expertise en gérontologie sociale, the Institut universitaire de gériatrie de Montréal, the Association québécoise des infirmières et infirmiers en gérontologie, the Association des établissements conventionnés, the Centre intégré universitaire de santé et de services sociaux du Nord-de-l’Île-de-Montréal, the department of health statistics of the Institut statistique du Québec, and Palliative care McGill). The authors give warm thanks to the survey respondents. Thanks are also owed to Taline Najarian and to Nathalie Asbar for their work sorting through the literature, conducted during an internship in 2013. Finally, the authors also thank Daniel Desrochers for assistance with French language editing and Patrick Riley for the translation into English. This paper was financed by the Centre de recherche et de partage des savoirs InterActions of the CUISSS du Nord-de-l’Île-de-Montréal.

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