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how many terminally ill patients die a year

how many terminally ill patients die a year

Palliative care services are those designed specifically for terminally ill and dying persons, with Quill and Abernethy arguing that specialist palliative care should be reserved for more complex and difficult cases [10]. Terminal illness or end-stage disease is a disease that cannot be cured or adequately treated and is reasonably expected to result in the death of the patient. Parliament last voted on assisted dying in 2015, rejecting by 330 against to 118 a private member’s bill to legalise assistance for those who were terminally ill and likely to die within six months. Economist Intelligence Unit, The quality of death, Ranking end-of-life care across the world, 2010, C. Centeno, D. Clark, T. Lynch et al., “Facts and indicators on palliative care development in 52 countries of the WHO European region: results of an EAPC task force,”, D. Clark and C. Centeno, “Palliative care in Europe: an emerging approach to comparative analysis,”. For instance, although roughly 60% of all deaths in Canada take place in hospital [24], most end-of-life care is provided by family members at home [25]. Some hospices in these five countries have inpatient beds, with specialist palliative care physicians typically providing services there [35, 38]. In the study, only 16 of 92 terminally ill patients at the Sloan-Kettering Cancer Center indicated a … Reportedly terminally ill with Hepatitis C, which he contracted while doing research on blood transfusions in the 1960s, Kevorkian was expected to die within a year in May 2006. In 2000, 2005, and 2010, about one-quarter of inpatient hospital deaths were for patients aged 85 and over. Most case managers are not specialists in palliative care [22]. 2. Most physical care needs during a terminal illness can be addressed by family caregivers, often with information and/or assistance from generalist healthcare professionals [6]. Specialist and basic or primary palliative care services are provided in most countries now for “the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual” [16, paragraph 1]. It could be argued that all terminally ill and dying persons should have ready palliative care access [14, 30]. 3. Comparing access rates across countries is difficult, as comparative information is not available [32]. For instance, most people with advanced chronic obstructive lung disease live at home despite periodic breathing crises that require attention in hospital emergency departments or medical offices [62]. Encyclopedia of Death and Dying, 2012, M. J. Loscalzo, “Palliative care: an historical perspective,”, H. D. Berman, “Palliative care is a specialty,”. The study showed that 42 percent of patients died at home at a cost of about $4,760 for their last month of life, while 40 percent died in a hospital at a cost of $32,379. Moreover, roughly 10% of deaths occur quickly and unexpectedly [1, 38, 54], with palliative care not possible or necessary in these cases [7]. European Association for Palliative Care. At this point in time, technologies are commonly but controversially used as comfort measures [8]. The intensity and range of these psychosocial needs are influenced by the person’s culture, gender, age, family, and many other factors [57]. Despite growth in the number of palliative care specialists and specialist services in most countries, the prospect of an increasing number of terminally ill and dying persons is daunting. With respiratory illnesses, shortness of breath and hypoxic restlessness are common and these often create substantial care needs [60]. Demographics: Death Rate 2011, S. T. Simon, B. Gomes, P. Koeskeroglu, I. J. Higginson, and C. Bausewein, “Population, mortality and place of death in Germany (1950–2050)—Implications for end-of-life care in the future,”, Statistics Canada, “Leading causes of death in Canada,”, D. M. Wilson, J. Cohen, S. Birch et al., “‘No one dies of old age’: implications for research, practice, and policy,”. Victoria Hospice, History of Palliative Care, 2011, J. Cohen, D. M. Wilson, A. Thurston, R. MacLeod, and L. Deliens, “Access to palliative care services in hospital: a matter of being in the right hospital. The United States currently has around 5,000 physicians with specialist palliative care credentialing [10]. After a year on a mechanical ventilator, the mortality rate for patients in long-term acute care hospitals ranges from 48 to 69.1 percent. These age- and disease-based rationing strategies may be successful at ensuring that the neediest persons receive specialist palliative care, but research is needed to validate these strategies and more clearly identify which persons should receive specialist palliative care services. The main difference is the waiting period. Predictions in these categories were mainly optimistic (patient died earlier) in 68.6% and 52.2%, respectively. The Worldwide Palliative Care Alliance’s recent report indicates that 20 million people or 37.4% of the 55 million people who die worldwide each year need palliative care, with this estimation based on disease-specific cause-of-death counts and expert opinion consolidated through a Delphi process [9]. Prior to the final stage of life near death, care needs are much more varied. Facing Death home page / watch online The UK also led in medical palliative education programs [47]. We will take steps to block users who repeatedly violate our commenting rules, terms of use, or privacy policies. Regardless, it is clear that most of the psychosocial and physical care needs of terminally ill and at times dying persons are met by family members and/or friends [57]. Top doctor's chilling claim: The NHS kills off 130,000 elderly patients every year. The goal is for all dying persons to achieve peaceful and painless death after having lived as fully as possible, with dying persons and their families prepared for death [16]. It is also important to note that physical care needs result from diagnostic tests and treatments. Background: In jurisdictions that permit euthanasia or physician-assisted suicide, patients with cancer comprise the largest group to die by these methods. Currently, around 55 million people die each year worldwide. The right to die movement entered the United States in 1980, when a man helped his dying wife ends her life. Hospice New Zealand, What is hospice?, 2006, D. M. Wilson, S. Birch, S. Sheps, R. Thomas, C. Justice, and R. MacLeod, “Researching a best-practice end-of-life care model for Canada,”, M. Gott, R. Frey, D. Raphael, A. O'Callaghan, J. Robinson, and M. Boyd, “Palliative care need and management in the acute hospital setting: a census of one New Zealand Hospital,”, D. Houttekier, J. Cohen, J. Surkyn, and L. Deliens, “Study of recent and future trends in place of death in Belgium using death certificate data: a shift from hospitals to care homes,”, D. Clark, M. Wright, J. Terminally ill patients can often predict when they are going to die, and have been known to say they’ve had a glimpse of heaven while on their death beds, according to nurses who care for them. 2017;26:4201. We will be providing unlimited waivers of publication charges for accepted research articles as well as case reports and case series related to COVID-19. World Health Organization, “The Top Ten Causes of Death,” 2013. Canadian Hospice Palliative Care Association, “Caring for Canadians at End of Life. We reserve the right to not post comments that are more than 400 words. Most other developed countries have also initiated palliative education programs and formal recognition measures [9, 31, 49]. You are fully responsible for your comments. Hospital charts study in a Canadian city,”, A. M. Williams, V. A. Crooks, K. Whitfield et al., “Tracking the evolution of hospice palliative care in Canada: a comparative case study analysis of seven provinces,”. Regardless, more efforts are needed to track specialist education developments, such as the helpful IAHPC Global Directory of Education in Palliative Care [76]. The authors have no conflict of interests to declare. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Burial Insurance for the Terminally Ill. Burial insurance for the terminally ill is the same idea, except its primary purpose is to help your loved ones pay for your funeral and burial. After many years of opposing assisted dying, this year the Royal College of Physicians shifted its stance to become neutral on the subject following a … Death with dignity laws, also known as physician-assisted dying or aid-in-dying laws, stem from the basic idea that it is the terminally ill people, not government and its interference, politicians and their ideology, or religious leaders and their dogma, who should make their end-of-life decisions and determine how much pain and suffering they should endure. As a result of this scarcity and for other reasons, most terminal illnesses and dying processes do not involve palliative care specialists. The median age of the deceased is 71. Because patients’ judgments may be ill-informed and states of mind can change, especially among the mentally ill, society should help people to die only when safeguards are in place. The first major initiative in palliative specialist education occurred in the United Kingdom (UK) in the 1970s, with Macmillan nurses [45] and Marie Curie nurses [46] subsequently active in many UK communities [47]. By submitting comments here, you are consenting to these rules: More efforts are also needed to advocate for palliative research funding and for widely disseminated research findings, as is being done through the European Association for Palliative Care [77]. We are committed to sharing findings related to COVID-19 as quickly as possible. Many other countries followed suit, but it was not until the 1997 Institute of Medicine report, Approaching Death: Improving Care at the End of Life, documented “glaring deficiencies in end-of-life care in the United States” [48, paragraph 4] that large-scale palliative care specialization and program expansion occurred in the United States. These needs tend to vary across individuals, often in keeping with the specific disease [9] and any comorbidities causing disability or death [55]. Canadian Institute for Health Information, Health Care Use at the End of Life in Western Canada, 2007, D. M. Wilson, “The duration and degree of end-of-life dependency of home care clients and hospital inpatients,”. These basic care needs can be met by family members and by healthcare providers who are not palliative care specialists [7]. A. Hewitt, “Current end-of-life care needs and care practices in acute care hospitals,”, D. Wilson and C. Truman, “Long-term-care residents. What Proportion of Terminally Ill and Dying People Require Specialist Palliative Care Services? Marie Curie Cancer Care, How we Started, 2011. Physical care needs are also common during terminal illnesses, with these needs typically increasing in number and intensity over time [56]. In the category of patients who were expected to die within 8-21 days, predictions were accurate in 16.0%, and in the category of patients expected to die within 22-42 days, this was 13.0%. This advanced knowledge and skill set differentiates them from other nurses, physicians, and healthcare or social service professionals who have all been taught to provide basic end-of-life care in their entry-level education programs [13]. ", International Journal of Palliative Care, vol. These and other tools also assist in identifying dying persons with specialist palliative care needs [10, 12]. Last year there were 4,513 suicides in England. With cardiovascular illnesses, care needs arising from peripheral edema and/or pulmonary edema are common [60]. D. Clark, Hospice in Historical Perspective. The situation of limited access to palliative specialists and specialist services is not confined to Canada [9, 31]. In contrast, few lower-income countries have specialist palliative training programs of any kind [9, 32]. Research is needed now to determine which persons and/or which circumstances necessitate specialist palliative care. An extensive 2013 review of the literature by the Cochrane Collaboration revealed terminally ill patients who went for home-based hospice care were more than twice as likely to die at home than those who didn’t and experienced less of a burden due to their symptoms. More than 750 people in Oregon used the law to die as of Dec. 31, 2013. All people who suffer from a difficult terminal illness or dying process, such as when severe intractable pain is present, should receive the services of a palliative care medical or nurse practitioner specialist [7, 9–11]. Following this, Canadian hospitals adopted palliative care principles to facilitate the open recognition of impending death and the provision of compassionate, holistic, and patient-centered end-of-life care [11, 17]. To address this question and highlight which persons require specialist palliative care, the current state of access to specialist palliative care services and specialists in Canada and other countries is highlighted, along with available evidence-based information on specialist services utilization and the care needs of terminally ill and dying persons. Estimates of very seriously ill patients being terminally sedated have ranged from 2 to more than 50 percent. Care coordination or case management is another common and important end-of-life care need [55]. Professor says doctors use 'death pathway' to euthenasia of the elderly A dignified death: While thousands of Covid-19 victims are forced to die alone, one Dutch paramedic is granting the terminally-ill their dying wishes during the coronavirus era Not only are difficult symptoms or other problems more likely to be successfully addressed but also specialist palliative care services have the potential to prevent difficult symptoms and other problems from appearing or escalating in severity [7, 10–12]. Consequently, palliative specialists are limited in number worldwide, with this scarcity of specialists being a concern now and for the future with an increasing number of deaths. Index Mundi, Canada Death Rate. Royal College of General Practitioners, “The Gold Standards Framework,” Prognostic Indicator Guidance, 2008, D. M. Wilson, B. Goodwin, and J. Most often an end-of-life process of some duration occurs, over which there may be a need for periodic or ongoing specialist palliative care [55]. Expansion in specialist palliative care experts and services subsequently occurred [11]. Palliative care specialists are not required to order their use or use discontinuation. This goal is difficult to achieve when psychosocial needs are high and personal or family resources are low. In Canada, younger people diagnosed with incurable cancer are much more often referred for specialist palliative care than older persons [11]. Psychiatric and ethical aspects of care at the end of life. Only a small proportion of people (typically only the 4–8% who require nursing home-level care) have extensive physical care needs for a number of months or even years before death [27, 28]. Nursing homes also provide end-of-life care through their (often unlicensed) care staff [27, 28]. It’s offered to applicants ages 45 – 80 and in coverage amounts up to $25,000 (sometimes even less). Source: Journal of the American Medical Association (2010) [Subscription required]. Other persons, such as the frail elderly who are approaching death, may also not require specialist palliative care assessment or intervention services [5]. Should Terminally Ill Patients Have the Right to Die? The number of inpatient hospital deaths decreased 8%, from 776,000 in 2000 to 715,000 in 2010, while the number of total hospitalizations increased 11%. Blows to independence and security, impaired abilities, and truncated visions of the future are just a few examples of the devastating losses many experience. One study found that only a small proportion of people are very disabled at the time they are diagnosed as terminally ill [26]. However, some people do not accept palliative care when it is presented as a care option, and it should not be forced on them [53]. Patients who di… The number of doctors who believe that medical aid in dying should be available to terminally ill patients grew from 46 percent in 2010 to 57 percent in 2014. Medical specialist expansion is anticipated now with new two-year subspecialist programs and other efforts to ensure that a growing proportion of Canadian physicians gain palliative specialist knowledge and skills [51, 52]. Faculty of Nursing, University of Alberta, Edmonton, AB, Canada, http://www.who.int/mediacentre/factsheets/fs310/en/index2.html, http://www.indexmundi.com/g/g.aspx?c=ca&v=26, http://www.statcan.gc.ca/bsolc/olc-cel/olc-cel?catno=84-215-x&lang=eng&lang=eng, http://secure.cihi.ca/cihiweb/products/end_of_life_report_aug07_e.pdf, http://www.chpca.net/media/7859/Raising_the_Bar_June_2010.pdf, http://www.thewpca.org/resources/global-atlas-of-palliative-care/, http://www.parl.gc.ca/36/2/parlbus/commbus/senate/Com-e/upda-e/rep-e/repfinjun00-e.htm, http://www.gpscbc.ca/system/files/11_EOL_PSP_GSF_Prognostic_Indicator_0.pdf, http://www.chpca.net/uploads/files/english/about_us/CHPCA_Strategic_Plan.pdf, http://www.who.int/cancer/palliative/definition/en/, http://www.parl.gc.ca/Content/SEN/Committee/351/euth/rep/lad-tc-e.htm, http://www.victoriahospice.org/about/history-victoria-hospice, https://www.cancercare.on.ca/common/pages/UserFile.aspx?fileId=77326, http://pcpcc-cpspsc.com/wp-content/uploads/2011/11/ReportEN.pdf, http://www.chpca.net/media/7622/fact_sheet_hpc_in_canada_may_2012_final.pdf, http://graphics.eiu.com/upload/QOD_main_final_edition_Jul12_toprint.pdf, http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_086277, http://www.africanpalliativecare.org/index.php?option=com_content&view=article, http://www.unicef.org/search/search.php?q=Assessment+of+the+Need+for+Palliative+Care+for+Children&Go.x=13&Go.y=10, http://www.mariecurie.org.uk/en-gb/who-we-are/how-we-started, http://www.deathreference.com/Ho-Ka/Hospice-in-Historical-Perspective.html, http://www.nurseone.ca/docs/NurseOne/Certification/Certification_stats_2013_e.pdf, http://www.cihi.ca/cihi-ext-portal/internet/en/document/spending+and+health+workforce/workforce/physicians/release_26sep13, http://www.health.gov.bc.ca/hcc/endoflife.html, http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Topics/Topics/Final+Days/When+Death+Is+Near.aspx, http://www.patient.co.uk/doctor/palliative-care, http://www.aihw.gov.au/WorkArea/DownloadAsset.aspx?id=60129545131, http://hospicecare.com/global-palliative-care/global-directory-of-education-programs/results.php?idregion=0&idlanguage=1&search=Search, http://www.eapcnet.eu/Themes/Research/AbouttheEAPCResearchNetwork/tabid/678/Default.aspx. The state does not track how many terminally ill … Up to 8.5% of terminally ill cancer patients express a sustained and pervasive wish for an early death, and in one survey 10% of terminally ill patients reported “seriously pursuing” physician assisted suicide (10,11). Senate of Canada, Subcommittee of the Standing Senate Committee on Social Affairs, Science, and Technology. Similarly, people with advanced dementia constitute another group that may be more in need of basic supportive care than specialist palliative care [61, 63]. One recent study showed that 97.3% of all 1,018 decedents in a Canadian hospital had one or more life-sustaining technologies (typically oxygen and an intravenous infusion) in use at the time of death [26]. However, specialist palliative care expansion is not without controversy. One large study found that 29.3% of all deaths in western Canada were due primarily to advanced old age [6]. Formal case managers are needed if family members are not present or are unable to coordinate care [55]. That number is expected to increase rapidly with accelerating population aging. Review articles are excluded from this waiver policy. British Columbia Ministry of Health, “A Provincial Framework for End-of-life Care,” 2006, T. W. LeBlanc, D. C. Currow, and A. P. Abernethy, “On Goldilocks, care coordination, and palliative care: making it “just right”,”, R. D. MacLeod, “Setting the context—what do we mean by psychosocial care in palliative care?” in, S. Shah, M. Blanchard, A. Tookman, L. Jones, R. Blizard, and M. King, “Estimating needs in life threatening illness: a feasibility study to assess the views of patients and doctors,”, M. D. Wenrich, J. R. Curtis, D. A. Ambrozy, J. D. Carline, S. E. Shannon, and P. G. Ramsey, “Dying patients' need for emotional support and personalized care from physicians: perspectives of patients with terminal illness, families, and health care providers,”, M. J. Johnson and S. Booth, “Palliative and end-of-life care for patients with chronic heart failure and chronic lung disease,”, K. A. Froggatt, D. M. Wilson, C. Justice et al., “End-of-life care in long-term care settings for older people: a literature review,”, D. M. Wilson, C. Ross, D. Goodridge, P. Davis, A. Landreville, and K. Roebuck, “The care needs of community-dwelling seniors suffering from advanced chronic obstructive pulmonary disease,”, I. Barnes, “End-of-life care for residents with dementia,”, K. Chinthapalli, “The birth and death of the Liverpool care pathway,”, M. Costantini, V. Romoli, S. de Leo et al., “Liverpool Care Pathway for patients with cancer in hospital: a cluster randomised trial,”, P. Edmonds, S. Karlsen, S. Khan, and J. Addington-Hall, “A comparison of the palliative care needs of patients dying from chronic respiratory diseases and lung cancer,”, G. Johnston, B. G. Lawson, J. Gao et al., “Predictors of palliative care program enrollment in Nova Scotia, Canada using new analytic methods for improved application and understanding,”, F. Burge, B. Lawson, and G. Johnston, “Trends in the place of death of cancer patients, 1992–1997,”, F. I. Burge, B. J. Lawson, G. M. Johnston, and E. Grunfeld, “A population-based study of age inequalities in access to palliative care among cancer patients,”, S. J. J. Claessen, A. L. Francke, Y. Engels, and L. Deliens, “How do GPs identify a need for palliative care in their patients? [43] [44] After applying for a pardon, parole, or commutation by the parole board and Governor Jennifer Granholm , he was paroled for good behavior on June 1, 2007. As this review only revealed 32 research articles and another 23 opinion articles that had some additional relevant information, a series of Internet searches were then conducted to assess English-language palliative care association website documents for relevant facts or other information. This age factor is understandable since younger dying persons and their families often have a higher psychological burden [68]. The African Palliative Care Association [43] estimated that 9.7 million people each year in Africa have end-of-life care needs, with another African report indicating that less than 1% of children in Kenya and less than 5% of children in South Africa or Zimbabwe in need of palliative care have access to it [44]. Another way of determining the extent of need for specialist palliative care is through determining which terminally ill or dying persons have received specialist palliative care services. By 2006, there were 57 US palliative medicine fellowship programs, and both the American Board of Medical Specialties and Accreditation Council for Graduate Medical Education recognized hospice/palliative medicine as a subspecialty [48]. Chief among all possible care needs from the time of a terminal diagnosis to death are emotional, spiritual, and other psychosocial needs [7, 57, 58]. Their caregivers, who were close family members, talked with the doctor, visiting nurse, and/or hospice workers about what to do. Access to specialist palliative care services is likely to be greater in some countries, notably England, Ireland, Wales, Scotland, and New Zealand [33–35]. Sometimes called “assisted suicide” or “right to die” initiatives, these laws make it possible for terminally ill patients to use prescribed medication to end their lives peacefully rather than suffering a painful and protracted death. “The Most Risky … Job Ever.” Reporting on “ISIS in Afghanistan”. This research is critical for ensuring that a good death can occur in every care setting. Empathy, caring, and respect for the dying person and their family are important, all of which do not require specialist preparation [57]. An interview study,”, C. Gardiner, M. Gott, C. Ingleton et al., “Extent of palliative care need in the acute hospital setting: a survey of two acute hospitals in the UK,”. Needs may be minimal to extensive in number, short- to long-term in nature, and basic to complex in terms of type [6–10]. This paper attempts to answer the question: what proportion of terminally ill and dying persons require specialist palliative care services? Care needs at this time are often basic, as the person is bedridden and comatose or semicomatose [8, 26, 56]. Lung, prostate, pancreatic, and head and neck cancers have the highest suicide rates among all cancer types (9). Other countries similarly have had an expansion of specialist palliative care experts, programs, and services; and an increase in educational offerings aimed at ensuring that family physicians and others know when specialist care is indicated [71–73]. Although many different illnesses and other factors are responsible for these deaths, most deaths occur in old age after advancing senescence has reduced life expectancy [1]. A university librarian was consulted before an advanced Medline and CINAHL library database search was undertaken for English-language research articles using the keywords end-of-life/palliative care needs/utilization. Sign up here as a reviewer to help fast-track new submissions. Palliative care clients in most countries have been those who are dying from cancer [19, 65]; for instance, 95% of recent recipients of specialist hospice/palliative care in the UK had end-stage cancer [66]. Not only do specialists provide direct care but also they plan palliative care services and educate generalists to enable them to provide effective basic or primary end-of-life care [10]. Increased fatigue and weakness are common, along with a growing dependency on others as a result of this decline in physical strength [56]. One palliative care specialist from the region remembers how, five years ago, a terminally ill patient asked her to help him die. Care of Vulnerable Canadians,” 2011, W. D. Duggleby, K. Penz, B. D. Leipert, D. M. Wilson, D. Goodridge, and A. Williams, “'I am part of the community but...' The changing context of rural living for persons with advanced cancer and their families,”, D. M. Wilson, C. D. Truman, R. Thomas et al., “The rapidly changing location of death in Canada, 1994–2004,”, D. M. Wilson, C. Truman, J. Huang et al., “Home care evolution in Alberta: how have palliative clients fared?”, A. Thurston, D. M. Wilson, and J. Depending on the care needs, specialist palliative care may be indicated periodically, not at all, or over an entire terminal illness. The majority of terminally ill and dying persons currently pass away with limited if any access to palliative care specialists and specialist services. Others fear burdening terminally ill and dying people with a change in healthcare providers [10], with more travelling required to obtain specialist services [75]. The scarcity of specialists and specialist services is a worldwide issue [9]. Moreover, most of the care of terminally ill and dying patients in hospital is provided by healthcare workers who are not palliative care specialists [26]. To address this question and highlight which p… Incision care needs with surgery, nausea prevention and management needs with chemotherapy, and skin care needs with radiation illustrate additional care needs that should be foregone if the tests or treatments are unnecessary. In most cases, these technologies were in use prior to the last days of life and they were not withdrawn from use despite some indications that they were no longer necessary or useful [26]. This man then found the Hemlock Society - an organization that would help terminally ill patients die in peace, and advocated for laws supporting physician assisted suicide . A further 300 terminally ill people end their own life in the UK every year [4]. However, people suffering from end-stage neurological, cardiovascular, and lung diseases are increasingly receiving specialist palliative care services [66], as these diseases cause significant physical and psychological distress [67, 68]. Since then, an increasing number of healthcare and other professionals have gained specialist palliative care credentials. In 2002, the Canadian Strategy on Palliative and End-of-Life Care was established to continue expanding specialist palliative and basic end-of-life care services. In those six areas, there were 760 suicides between 2005 and 2013 of which 56, or 7.4 per cent, involved terminally ill patients. Specialist palliative care access may also be higher in Belgium and the Netherlands, as specialist palliative care services are developing in nursing homes for the dual purpose of ensuring high quality onsite care and reducing end-of-life transfers to hospital [39]. For instance, in 2030, when the entire baby boom cohort has reached the age of 65, 500,000 deaths are anticipated for Canada, double the current number [4, 5].

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