575679 research-article2015
PMJ0010.1177/0269216315575679Palliative MedicineLeung et al.
Original Article
Chronically homeless persons’ participation in an advance directive intervention: A cohort study
Palliative Medicine 1–10 © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216315575679 pmj.sagepub.com
Alexander K Leung1, Dhruv Nayyar1, Manisha Sachdeva1, John Song2 and Stephen W Hwang1,3
Abstract Background: Chronically homeless individuals have high rates of hospitalization and death, and they may benefit from the completion of advance directives. Aim: To determine the rate of advance directive completion using a counselor-guided intervention, identify characteristics associated with advance directive completion, and describe end-of-life care preferences in a group of chronically homeless individuals. Design: Participants completed a survey and were offered an opportunity to complete an advance directive with a trained counselor. Participants: A total of 205 residents of a shelter in Canada for homeless men (89.1% of those approached) participated from April to June 2013. Results: Duration of homelessness was ⩾12 months in 72.8% of participants, and 103 participants (50.2%) chose to complete an advance directive. Socio-demographic characteristics, health status, and health care use were not associated with completion of an advance directive. Participants were more likely to complete an advance directive if they reported thinking about death on a daily basis, believed that thinking about their friends and family was important, or reported knowing their wishes for end-of-life care but not having told anyone about these wishes. Among individuals who completed an advance directive, 61.2% named a substitute decision maker, and 94.1% expressed a preference to receive cardiopulmonary resuscitation in the event of a cardiorespiratory arrest if there was a chance of returning to their current state of health. Conclusion: A counselor-guided intervention can achieve a high rate of advance directive completion among chronically homeless persons. Most participants expressed a preference to receive cardiopulmonary resuscitation in the event of a cardiorespiratory arrest.
Keywords Advance directives, advance care planning, homeless persons, end-of-life care, terminal care, patient preference
What is already known about the topic? •• Homeless persons, despite being at greatly increased risk of life-threatening illness and death, have rarely had the opportunity to discuss end-of-life care or to complete an advance directive. •• In one study conducted in a homeless population, a one-on-one counselor-guided intervention led to significantly higher completion rates of advance directives (37.9%) compared to self-directed completion (12.8%). •• The generalizability of this intervention to chronically homeless individuals with high levels of comorbidity and social isolation is uncertain. What this paper adds? •• This study demonstrates that a one-on-one counselor-guided intervention was accepted by 50% of a population of chronically homeless men and successfully assisted them in completing an advance directive.
1Centre
for Research on Inner City Health, Li Ka Shing Knowledge Institute of St. Michael’s Hospital, Toronto, ON, Canada 2Center for Bioethics, University of Minnesota, Minneapolis, MN, USA 3Division of General Internal Medicine, Department of Medicine, University of Toronto, Toronto, Canada
Corresponding author: Alexander K Leung, Centre for Research on Inner City Health, Li Ka Shing Knowledge Institute of St. Michael’s Hospital, 30 Bond Street, Toronto, ON M5B1W8, Canada. Email: [email protected]
Downloaded from pmj.sagepub.com at NORTHERN KENTUCKY UNIV on June 14, 2015
2
Palliative Medicine •• In this population, attitudes toward death and having thought about wishes for end-of-life care were significantly associated with the decision to complete an advance directive. •• A majority (61%) of chronically homeless individuals who completed an advance directive were able to identify a preferred substitute decision maker. •• Most chronically homeless individuals indicated a strong preference to receive cardiopulmonary resuscitation (CPR) in the event of a cardiorespiratory arrest.
Implications for practice, theory, or policy •• Health care providers who work with patients who are homeless should be aware that very few of these individuals have had the opportunity to engage in advance care planning. •• A relatively simple intervention can assist chronically homeless individuals to complete an advance directive and/or identify a preferred substitute decision maker. •• Further research is needed to determine whether the completion of advance directives by homeless persons has an effect on their subsequent health care.
Introduction The importance of advance care planning has been increasingly recognized.1,2 Advance care planning may be particularly relevant for people experiencing homelessness,3–5 which affects as many as 3.5 million people in the United States6 and 4.1 million people in Europe in any given year.7 In developed nations, homeless individuals suffer from higher morbidity and are much more likely to be hospitalized than individuals in the general population.8–10 In North America, homeless people have mortality rates 1.6 to 10 times that of the general population.5,11–15 In Northern Europe, standardized mortality ratios range from 3.5 to 6.7 for homeless people compared to the general population.16–19 In addition, many homeless persons are not in regular contact with family members or friends and are therefore less likely to have substitute decision makers identified or available during end-of-life care situations.20,21 The use of advance care planning and advance directives has been proposed as a method to improve endof-life care for homeless persons.20,22,23 Advance directives may give homeless individuals greater control over their health care decisions and enhance person-centered care for this marginalized population.21,24 Only one previously published study has attempted to implement advance care planning and advance directive completion in a homeless population.22 In a randomized controlled trial involving a community-based sample of homeless people in Minneapolis, Minnesota, a one-on-one counselor-guided intervention led to significantly higher completion rates of advance directives (37.9%) compared to self-directed completion (12.8%).22 The generalizability of this intervention to other homeless populations, especially chronically homeless individuals with high levels of comorbidity and social isolation, is uncertain. The objectives of this study were to (1) determine the rate of advance directive completion using a one-on-one counselor-guided intervention in a group of chronically homeless persons, (2) identify individual characteristics associated with advance
directive completion, (3) describe end-of-life care preferences in this population, and (4) ascertain whether completion of an advance directive was associated with changes in attitudes toward end-of-life care and death.
Methods Participants were recruited between April and June 2013 from a homeless shelter for men in Toronto, Canada. Recruitment took place among programs that served chronically homeless individuals who were residents in a managed alcohol harm reduction program,25 an infirmary program that treats individuals with acute or chronic illness that requires ongoing monitoring, and a long-term program for individuals who had been homeless on a chronic basis. During the recruitment period, 253 individuals were registered in these shelter programs. Of these 253 individuals, 230 (91%) were located and approached for recruitment. Study interviewers approached each resident and described the study following a standardized script. Individuals were eligible to participate in the study if they were a resident in one of the shelter programs listed above, were able to communicate in English, and had decisional capacity. A validated screening instrument was used to assess understanding of procedures and decisional capacity.26 All study participants provided written informed consent. Participants were interviewed one-on-one in a private office at the shelter. Participants completed a survey that obtained information on socio-demographic characteristics and attitudes toward end-of-life care and death (eAppendix). A $10 CAD honorarium was provided to each participant at the conclusion of this survey.
Advance directive completion After completion of the survey, participants were invited to complete an advance directive with the interviewer, who
Downloaded from pmj.sagepub.com at NORTHERN KENTUCKY UNIV on June 14, 2015
3
Leung et al. was also trained as a counselor in advance directive completion. Participants were explicitly informed that completion of an advance directive was entirely optional and was not associated with an honorarium. Completion of the advance directive required a higher level of capacity and English comprehension than completion of the survey. Interviewers did not proceed with completion of an advance directive if the participant failed screening by an instrument that assessed decisional capacity to complete an advance directive. All participants who completed an advance directive provided additional written informed consent. The advance directive document, entitled “My Living Will, An Ontario Advance Directive” (eAppendix), was adapted from the Study of End-of-Life Preferences among Homeless People (SELPH) Advance Directive22 and the Living Will from the University of Toronto Joint Centre for Bioethics.27 The advance directive includes elements necessary for a legal advance directive or Power of Attorney for Personal Care in Ontario,28 with additional items adapted from Chochinov’s dignity-conserving care model29 to address the specific needs of homeless persons.22 The document incorporates a tool that allows participants to decide which life-sustaining treatments30 they would want to receive or forgo under four different states of health: current health, moderate dementia, severe dementia, and permanent coma. A group of three medical students and two physicians served as both survey interviewers and counselors on advance directive completion. In order to assist in the completion of advance directives, each member was trained in end-of-life care planning. Training involved a review of literature on advance directives and the unique end-of-life care needs of homeless persons.4,20–24,29–32 Each member of the study team participated in practice interviews before engaging in an actual interview with a study participant. In one-on-one discussions, counselors explained the advance directive to participants and assessed their ability to complete an advance directive. The advance directive was not completed if the counselor determined that the individual lacked either the necessary decisional capacity or English comprehension skills. Individuals who were interested and capable of completing an advance directive were guided through the process by the counselor. Counselor guidance involved describing and clarifying any concepts and end-of-life preferences, assistance with reading, writing, and witnessing to ensure the legality of the document. Individuals who expressed interest in completing an advance directive at a later time were provided a blank copy of the advance directive and offered an appointment within 1 week. Upon completion of the advance directive, participants were provided a copy of their advance directive and a wallet card with contact information if access to their advance directive was required. Participants were asked whether
they wanted the counselors to provide copies of their advance directive to the shelter, the primary health care team providing care at the shelter, and/or their family physician. To assess for changes immediately after completion of the advance directive, participants were asked to answer a post-completion survey that consisted of questions about end-of-life care that had been administered earlier. The post-completion survey also asked participants to comment on their experience with the study. No honorarium was provided for the completion of the post-completion survey.
Data analysis The data collected from 205 surveys, 103 advance directives, and 96 post-completion surveys were analyzed. For the data collected from the initial surveys, chi-square tests (for categorical variables) and T-tests (for continuous variables) were used to compare the characteristics of those who did and did not complete an advance directive. Individuals who had previously completed an advance directive were classified as declining to complete an advance directive. Mann–Whitney U tests were used to compare attitudes toward end-of-life care of participants who did and did not complete an advance directive. Differences between pre-completion and post-completion survey responses for each participant were calculated using the Wilcoxon signed-rank test. Because previous studies have found significant differences in end-of-life care preferences by race, chi-square tests were used to compare treatment preferences among White and nonWhite participants. Missing data were excluded from statistical analysis. The level of significance used for all tests was p
PMJ0010.1177/0269216315575679Palliative MedicineLeung et al.
Original Article
Chronically homeless persons’ participation in an advance directive intervention: A cohort study
Palliative Medicine 1–10 © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216315575679 pmj.sagepub.com
Alexander K Leung1, Dhruv Nayyar1, Manisha Sachdeva1, John Song2 and Stephen W Hwang1,3
Abstract Background: Chronically homeless individuals have high rates of hospitalization and death, and they may benefit from the completion of advance directives. Aim: To determine the rate of advance directive completion using a counselor-guided intervention, identify characteristics associated with advance directive completion, and describe end-of-life care preferences in a group of chronically homeless individuals. Design: Participants completed a survey and were offered an opportunity to complete an advance directive with a trained counselor. Participants: A total of 205 residents of a shelter in Canada for homeless men (89.1% of those approached) participated from April to June 2013. Results: Duration of homelessness was ⩾12 months in 72.8% of participants, and 103 participants (50.2%) chose to complete an advance directive. Socio-demographic characteristics, health status, and health care use were not associated with completion of an advance directive. Participants were more likely to complete an advance directive if they reported thinking about death on a daily basis, believed that thinking about their friends and family was important, or reported knowing their wishes for end-of-life care but not having told anyone about these wishes. Among individuals who completed an advance directive, 61.2% named a substitute decision maker, and 94.1% expressed a preference to receive cardiopulmonary resuscitation in the event of a cardiorespiratory arrest if there was a chance of returning to their current state of health. Conclusion: A counselor-guided intervention can achieve a high rate of advance directive completion among chronically homeless persons. Most participants expressed a preference to receive cardiopulmonary resuscitation in the event of a cardiorespiratory arrest.
Keywords Advance directives, advance care planning, homeless persons, end-of-life care, terminal care, patient preference
What is already known about the topic? •• Homeless persons, despite being at greatly increased risk of life-threatening illness and death, have rarely had the opportunity to discuss end-of-life care or to complete an advance directive. •• In one study conducted in a homeless population, a one-on-one counselor-guided intervention led to significantly higher completion rates of advance directives (37.9%) compared to self-directed completion (12.8%). •• The generalizability of this intervention to chronically homeless individuals with high levels of comorbidity and social isolation is uncertain. What this paper adds? •• This study demonstrates that a one-on-one counselor-guided intervention was accepted by 50% of a population of chronically homeless men and successfully assisted them in completing an advance directive.
1Centre
for Research on Inner City Health, Li Ka Shing Knowledge Institute of St. Michael’s Hospital, Toronto, ON, Canada 2Center for Bioethics, University of Minnesota, Minneapolis, MN, USA 3Division of General Internal Medicine, Department of Medicine, University of Toronto, Toronto, Canada
Corresponding author: Alexander K Leung, Centre for Research on Inner City Health, Li Ka Shing Knowledge Institute of St. Michael’s Hospital, 30 Bond Street, Toronto, ON M5B1W8, Canada. Email: [email protected]
Downloaded from pmj.sagepub.com at NORTHERN KENTUCKY UNIV on June 14, 2015
2
Palliative Medicine •• In this population, attitudes toward death and having thought about wishes for end-of-life care were significantly associated with the decision to complete an advance directive. •• A majority (61%) of chronically homeless individuals who completed an advance directive were able to identify a preferred substitute decision maker. •• Most chronically homeless individuals indicated a strong preference to receive cardiopulmonary resuscitation (CPR) in the event of a cardiorespiratory arrest.
Implications for practice, theory, or policy •• Health care providers who work with patients who are homeless should be aware that very few of these individuals have had the opportunity to engage in advance care planning. •• A relatively simple intervention can assist chronically homeless individuals to complete an advance directive and/or identify a preferred substitute decision maker. •• Further research is needed to determine whether the completion of advance directives by homeless persons has an effect on their subsequent health care.
Introduction The importance of advance care planning has been increasingly recognized.1,2 Advance care planning may be particularly relevant for people experiencing homelessness,3–5 which affects as many as 3.5 million people in the United States6 and 4.1 million people in Europe in any given year.7 In developed nations, homeless individuals suffer from higher morbidity and are much more likely to be hospitalized than individuals in the general population.8–10 In North America, homeless people have mortality rates 1.6 to 10 times that of the general population.5,11–15 In Northern Europe, standardized mortality ratios range from 3.5 to 6.7 for homeless people compared to the general population.16–19 In addition, many homeless persons are not in regular contact with family members or friends and are therefore less likely to have substitute decision makers identified or available during end-of-life care situations.20,21 The use of advance care planning and advance directives has been proposed as a method to improve endof-life care for homeless persons.20,22,23 Advance directives may give homeless individuals greater control over their health care decisions and enhance person-centered care for this marginalized population.21,24 Only one previously published study has attempted to implement advance care planning and advance directive completion in a homeless population.22 In a randomized controlled trial involving a community-based sample of homeless people in Minneapolis, Minnesota, a one-on-one counselor-guided intervention led to significantly higher completion rates of advance directives (37.9%) compared to self-directed completion (12.8%).22 The generalizability of this intervention to other homeless populations, especially chronically homeless individuals with high levels of comorbidity and social isolation, is uncertain. The objectives of this study were to (1) determine the rate of advance directive completion using a one-on-one counselor-guided intervention in a group of chronically homeless persons, (2) identify individual characteristics associated with advance
directive completion, (3) describe end-of-life care preferences in this population, and (4) ascertain whether completion of an advance directive was associated with changes in attitudes toward end-of-life care and death.
Methods Participants were recruited between April and June 2013 from a homeless shelter for men in Toronto, Canada. Recruitment took place among programs that served chronically homeless individuals who were residents in a managed alcohol harm reduction program,25 an infirmary program that treats individuals with acute or chronic illness that requires ongoing monitoring, and a long-term program for individuals who had been homeless on a chronic basis. During the recruitment period, 253 individuals were registered in these shelter programs. Of these 253 individuals, 230 (91%) were located and approached for recruitment. Study interviewers approached each resident and described the study following a standardized script. Individuals were eligible to participate in the study if they were a resident in one of the shelter programs listed above, were able to communicate in English, and had decisional capacity. A validated screening instrument was used to assess understanding of procedures and decisional capacity.26 All study participants provided written informed consent. Participants were interviewed one-on-one in a private office at the shelter. Participants completed a survey that obtained information on socio-demographic characteristics and attitudes toward end-of-life care and death (eAppendix). A $10 CAD honorarium was provided to each participant at the conclusion of this survey.
Advance directive completion After completion of the survey, participants were invited to complete an advance directive with the interviewer, who
Downloaded from pmj.sagepub.com at NORTHERN KENTUCKY UNIV on June 14, 2015
3
Leung et al. was also trained as a counselor in advance directive completion. Participants were explicitly informed that completion of an advance directive was entirely optional and was not associated with an honorarium. Completion of the advance directive required a higher level of capacity and English comprehension than completion of the survey. Interviewers did not proceed with completion of an advance directive if the participant failed screening by an instrument that assessed decisional capacity to complete an advance directive. All participants who completed an advance directive provided additional written informed consent. The advance directive document, entitled “My Living Will, An Ontario Advance Directive” (eAppendix), was adapted from the Study of End-of-Life Preferences among Homeless People (SELPH) Advance Directive22 and the Living Will from the University of Toronto Joint Centre for Bioethics.27 The advance directive includes elements necessary for a legal advance directive or Power of Attorney for Personal Care in Ontario,28 with additional items adapted from Chochinov’s dignity-conserving care model29 to address the specific needs of homeless persons.22 The document incorporates a tool that allows participants to decide which life-sustaining treatments30 they would want to receive or forgo under four different states of health: current health, moderate dementia, severe dementia, and permanent coma. A group of three medical students and two physicians served as both survey interviewers and counselors on advance directive completion. In order to assist in the completion of advance directives, each member was trained in end-of-life care planning. Training involved a review of literature on advance directives and the unique end-of-life care needs of homeless persons.4,20–24,29–32 Each member of the study team participated in practice interviews before engaging in an actual interview with a study participant. In one-on-one discussions, counselors explained the advance directive to participants and assessed their ability to complete an advance directive. The advance directive was not completed if the counselor determined that the individual lacked either the necessary decisional capacity or English comprehension skills. Individuals who were interested and capable of completing an advance directive were guided through the process by the counselor. Counselor guidance involved describing and clarifying any concepts and end-of-life preferences, assistance with reading, writing, and witnessing to ensure the legality of the document. Individuals who expressed interest in completing an advance directive at a later time were provided a blank copy of the advance directive and offered an appointment within 1 week. Upon completion of the advance directive, participants were provided a copy of their advance directive and a wallet card with contact information if access to their advance directive was required. Participants were asked whether
they wanted the counselors to provide copies of their advance directive to the shelter, the primary health care team providing care at the shelter, and/or their family physician. To assess for changes immediately after completion of the advance directive, participants were asked to answer a post-completion survey that consisted of questions about end-of-life care that had been administered earlier. The post-completion survey also asked participants to comment on their experience with the study. No honorarium was provided for the completion of the post-completion survey.
Data analysis The data collected from 205 surveys, 103 advance directives, and 96 post-completion surveys were analyzed. For the data collected from the initial surveys, chi-square tests (for categorical variables) and T-tests (for continuous variables) were used to compare the characteristics of those who did and did not complete an advance directive. Individuals who had previously completed an advance directive were classified as declining to complete an advance directive. Mann–Whitney U tests were used to compare attitudes toward end-of-life care of participants who did and did not complete an advance directive. Differences between pre-completion and post-completion survey responses for each participant were calculated using the Wilcoxon signed-rank test. Because previous studies have found significant differences in end-of-life care preferences by race, chi-square tests were used to compare treatment preferences among White and nonWhite participants. Missing data were excluded from statistical analysis. The level of significance used for all tests was p
