bs_bs_banner
Journal of Evaluation in Clinical Practice ISSN 1365-2753
Teleological care and the last years of life Victor Cellarius MD MA PhD1,2 and Ross Upshur MA MD MSc3,4,5,6 1
Physician, Temmy Latner Centre for Palliative Care, Mount Sinai Hospital, Toronto, Ontario, Canada Assistant Professor, Division of Palliative Care, Department of Family and Community Medicine, University of Toronto, Toronto, Ontario, Canada 3 Head, Division of Clinical Public Health, Dalla Lana School of Public Health, Toronto, Ontario, Canada 4 Medical Director, Clinical Research, Bridgepoint Health, Toronto, Ontario, Canada 5 Canada Research Chair, Primary Care Research, Toronto, Ontario, Canada 6 Professor, Department of Family and Community Medicine, University of Toronto, Toronto, Ontario, Canada 2
Keywords end-of-life care, palliative care, patient-centred care, person-centred care, primary care Correspondence Dr Victor Cellarius Temmy Latner Centre for Palliative Care, Family and Community Medicine 60 Murray Street, 4th Floor Toronto, Ontario M5T3L9 Canada E-mail: [email protected] Accepted for publication: 19 May 2014 doi:10.1111/jep.12211
Abstract The final years of life present challenges for care. In middle-/high-income countries, the percentage of people of advanced age in the population is growing, and the dying process continues to become more complex and protracted. We propose that a new understanding of care, ‘teleological care’, be considered as an important response to the contemporary challenges of the final years of life. Teleological care is a philosophy of care built around the root idea of a telos (i.e. end) in three senses: (1) the end of life as a temporal limit; (2) the ends of life as the individual’s purpose and meaning; (3) the end of life as the meaning of life as a whole. In its practice, teleological care adheres to principles of (1) fidelity of practitioner to patient; (2) generalism of practitioners; and (3) coordination of care within existing services. With this philosophy and practice, care is administered by generalist health care professionals arranging for flow between care that attempts to reverse, stop or slow the disease process when appropriate, with care to address symptoms, and with care that responds to the difficulties of dying. Teleological care involves already existing programmes in roughly their present forms, serving as an overarching layer of organization added to the existing systems. Teleological care refocuses the concept of care to the patient’s perspective with emotional, spiritual and practical support for facing the end of life, and a space for narrative and reflection within a wider circle of care.
Introduction The final years of life present challenges for care. Consider, for example, an elderly man with vascular dementia, moaning and shifting in bed as his wife struggles to prepare him for a visit to his family doctor; or a woman panting towards the hospital nursing station under the burdens of diabetes, chronic obstructive pulmonary disease (COPD), heart failure and arthritis; or a man confined to his chair in the inexorable freeze of Parkinson’s. All of these patients might be considered to be in their last years of life. It may be that they do not qualify for palliative care, they may be burdened with multiple specialist visits and they may be without a family doctor to visit them at home. How should these persons best receive care? How do we ‘know’ what constitutes best care? The fact that the final years presents challenges is true when we consider one person’s experience, and also true when we consider the impact of these years across society. In middle-/high-income countries such as Canada (upon which we focus in this article), the percentage of people of advanced age in the population is growing, and the dying process continues to become more
complex and protracted [1]. The models of care for such persons have changed over the past century, and while the advances have been great, a broad challenge has arisen that none of the models can fully address. Indeed, the charge has been made that attempts to improve patients’ ‘health status’ may sometimes detach from, override and undermine the broader goal of patient well-being [2]. It may well be time to question how we understand the meaning of care, and embark on the process of rethinking our concepts. We propose that a new understanding of care, ‘teleological care’, be considered as an important response to the contemporary challenges of the final years of life. This paper will review the current situation and introduce the concept of teleological care.
The challenge of the final year Background Most persons in middle-/high-income countries die of progressive ill health in old age. This has prompted an ongoing consideration in these countries regarding how the practices of medicine can
Journal of Evaluation in Clinical Practice 20 (2014) 953–956 © 2014 John Wiley & Sons, Ltd.
953
Teleological care
best promote well-being throughout life, especially during the last years. Using Canada as an example, we see that presently only a small percentage of persons receive specific end-of-life care in their last year. Some experts suggest that 95% of deaths could benefit from palliative care, yet perhaps at most 30% of Canadians receive access to palliative care, and even then, hospice and palliative care programmes are unevenly distributed across the country [3]. Concern about end-of-life care has been expressed recurrently in the literature over the past decade. Some of the reasons for poor end-of-life care include the fact that even if age and debility are plainly visible, accurately prognosticating death in these situations remains difficult [4]; the fact there remains resistance by medical practitioners and patients to consider death, especially in the case of chronic non-malignant diseases [5]; the fact that resources presently focused on end-of-life care are insufficient or difficult to coordinate [3]; the fact that surveillance of patient experience at end-of-life remains challenging [6]; and the fact that medical practitioners may differ profoundly in their understandings of the definition, aims and delivery of end-of-life care [7]. These are, in essence, philosophical issues about the meaning and purpose of the practice of medicine. As in other middle-/high-income countries, the number of persons dying in Canada each year will increase significantly in the coming decades, and the number of persons living with multiple, progressive chronic diseases is expected to increase dramatically in line with this current demographic transition. A recent review suggested that more than 75% of deaths in middle-/highincome countries will be from such chronic diseases [8]. In Canada, recognition of the individual, social and economic benefits of good care in the final years has been joined by the assertion from some quarters that such care is a right. Furthermore, providing care that incorporates the perspectives of the patient dealing with ‘any life-limiting prognosis’ will mean reconceiving when and how discussions about future care and dying should be undertaken [9]. Considering all of these points, the profound challenge becomes apparent. How are we best to care for the growing number of persons who should receive good care in their last years?
Responses The twentieth century saw a great expansion in the ability of biomedicine to diagnose and to treat disease, and with this ongoing expansion three broad models came to inform the care for persons in their last years of life. The models – which we will call (1) ‘disease care’; (2) ‘dying care’; and (3) ‘symptom care’ – are distinguished by their focus of care, and cut across various specialties and across approaches such as acute care, chronic care, preventative care and palliative care. The first model, which appeared with the advances in diagnosis and treatment arising in the early twentieth century, is what we will call ‘disease care’. Disease care may be provided by generalist or specialist physicians, and is defined by a focus on limiting the impact of disease by attempting to reverse, stop or slow the disease process. The second model, which appeared in the second half of the twentieth century as the ‘hospice movement’, we call ‘dying care’. Dying care is defined by an overt emphasis on the process of dying, including efforts to provide symptom relief and emotional 954
V. Cellarius and R. Upshur
and social support. In this model the patients’ death is understood, at least by the health care providers, to be imminent and unavoidable. The third model, which is best exemplified by modern palliative care, and which in its most explicit form developed from dying care (to which it remains closely related), we call ‘symptom care’. Symptom care is defined by a focus on easing suffering and optimizing function across a wider range of situations than in dying care. This care is still often, but importantly not always, given in situations of progressive, life-limiting disease. Clearly, any previous or present existing programmes of care will have adopted some aspects of each of the three models. A geriatric service, a primary care service or an internal medicine service, for example, may favour disease care, adopt symptom care to a degree and dying care when the situation warrants it. Likewise, a palliative care service may favour symptom care and dying care, but adopt disease care to the extent that this seems to be in the interests of the patient. Up to this point, the suggestions for responding to the challenge of the final year have all quite reasonably called for existing programmes to expand the care they provide. Although none of the calls have used the terminology employed in this paper (i.e. disease, symptom and dying care), the arguments implicitly do so. Existing programmes that usually favour disease care (e.g. oncology, internal medicine specialities, primary care, paediatrics) are asked to adopt more of dying and palliative care; or end-of-life programmes (e.g. hospices) and palliative care programmes are asked to adopt more of disease care (e.g. managing chronic conditions in their advanced stages). Difficulties Each of these initiatives has potential to respond favourably to the challenge of the final years, but each also struggles with difficulties. One overall approach has been to encourage end-of-life and palliative care programmes to widen their scope. End-of-life programmes (e.g. hospices and some palliative care units) by definition typically maintain a narrow focus, caring for patients with short prognoses. These programmes often have a small number of beds and practitioners available, and often adhere closely to the original focus of hospice care on mitigating the difficulties during the unambiguous period of dying. Some end-of-life programmes have broadened their focus beyond care for persons close to death and have become palliative care programmes of another sort – caring for patients earlier in their disease trajectory or for patients whose needs have more to do with symptoms than with dying (e.g. chronic pain, supportive oncological care, frailty and multiple concurrent chronic illnesses). This is the model for palliative care that is gaining traction in the United States, for example, and is the model that has been lauded for showing benefits that including better quality of life and lengthening of life [10,11]. But like end-of-life care programmes, palliative care programmes typically have a small number of practitioners and beds relative to the potential demand. These programmes are able to adopt the disease care model to a degree, but lack the capacity to provide for the large and increasing number of patients in their last years of life. Most efforts have now turned to encouraging programmes focusing (primarily) on disease care to adopt more palliative and dying care into their approach. Given the history of hospice care’s
© 2014 John Wiley & Sons, Ltd.
V. Cellarius and R. Upshur
initial focus on patients with end-stage oncological disease, oncology programmes were the first to incorporate more of the palliative and dying models. Presently, there are efforts underway to encourage programmes caring for persons with end-stage diseases such as congestive heart failure, chronic kidney disease and COPD and neurological disease to adjust their approach. There are also ongoing efforts to encourage generalist programmes (e.g. family medicine, internal medicine) to adjust similarly. A prominent example outside Canada is the United Kingdom’s ‘gold standards framework’, a nationwide effort that encourages generalists to adopt more of the palliative and dying care models into their care [12]. These efforts have made headway, but have faced difficulties in gaining widespread acceptance, holding on to initial gains and have yet to show their impact on patient outcomes [12].
Teleological care Overview Alongside the efforts mentioned above, we propose another model of care to address the challenge of the final years. Teleological care is a philosophy of care that incorporates disease, symptom and dying care as needed. But rather than attempting to change existing programmes of care as other efforts do, it involves already existing programmes in roughly their present forms. It incorporates these programmes under the larger concept of teleological care. In this way it differs from efforts to expand services, efforts to expand palliative care and primary care. In overview, teleological care is a philosophy of care built around the root idea of a telos, or end, in three senses: (1) the end of life as a temporal limit; (2) the ends of life as the individual’s purpose and meaning; (3) the end of life as the meaning of life as a whole; in its practice it adheres to principles of (1) fidelity of practitioner to patient; (2) generalism of practitioners; and (3) coordination of care within existing services. With this philosophy and practice, care is administered by generalist health care professionals able to arrange care under the three current models of care as appropriate (i.e. disease, symptom and dying care) by arranging for flow between care that attempts to reverse, stop or slow the disease process when appropriate and consistent with stated treatment goals, with care to address symptoms and with care that responds to the difficulties of dying. To achieve this broad spectrum of care, teleological programmes negotiate care for patients with other programmes – primary care providers, general internal medicine providers, specialists, palliative care providers and hospice providers. Philosophy Teleological care has its conceptual and practical roots in the telos of life, in which we distinguish three understandings. 1 Death – In a direct sense, teleological care concerns telos as the end of life, as death. It understands death to be a normal part of life, and understands that dying and death present a variety of opportunities and difficulties. In keeping with this, the patients under teleological care are those who, given their present conditions and available and acceptable treatments, are more likely than not to die in the coming years. Whether this prognosis is chosen to be one year or two, or even more, will depend on the
© 2014 John Wiley & Sons, Ltd.
Teleological care
aims and possibilities available to individual programmes or jurisdictions – what matters more is the overall understanding of care underlying teleological care. Provided that a practitioner reasonably judges a patient to likely be in his or her last years of life, the referral can be made. The actual judgment of this condition will be sometimes clearer and sometimes less so, but the appropriateness of the referral does not hinge on the accuracy of the prediction but hinges instead on the occurrence of the judgment itself. In this way, there is in teleological care an accepted likelihood that some of the patients will live longer than expected by the criteria for referral. Furthermore, the patient need not take a particular view of his or her death. They may or may not believe it to be imminent, they may or may not accept it and they may or may not wish to delay it if possible. What matters more is that a judgment has been made on the available clinical situation that this person is more likely than not to be in their last years of life. 2 Purpose – Teleological care also concerns telos as the ends or purposes of an individual’s life. It endeavours to support or deepen patients’ understanding of their situation and their possibilities. Some of this may concern clinical choices and advanced care planning, and some may involve discussion of the reason for their referral to the programme, and some of this will lie in other areas. For example, the patient may wish to reflect on the practicalities of their situation, including financial or social issues; or the patient may wish to consider meaningful aspects of their past and future; or the patient may wish to consider their relationships with family and friends. 3 Meaning – Teleological care also concerns telos as the meaning of life. It helps the patient to explore the shared meanings of society towards community and culture, and to explore existential and spiritual meanings of life, especially in the face of their own mortality. Delivery Although the foundational understanding of teleological care is built on death, purpose and meaning, there are also important practical features of this model of care. The key features that distinguish the delivery of teleological care are fidelity, generalism and coordination. Certainly, many existing programmes already embrace some or even all of these features, but what sets teleological care apart is the adherence to these features in conjunction with the foundational understandings discussed above. 1 Fidelity. Once a patient enters teleological care she or he will remain under the programme’s care unless she or he wishes to leave. The idea is that practitioners accompany the patient through the various transitions in the last years of life regardless of the patient’s outlook or situation. 2 Generalism. Teleological care revises and reinvigorates the notion of generalist care. Practitioners involved will come from various disciplines (e.g. medicine, nursing, social work, pastoral care, counselling, pharmacy) that possess a wide range of abilities, including knowledge of current disease care for chronic diseases, knowledge of specialized palliative care and a facility to engage in discussion and counselling. In consultation with the patient, teleological care assists other generalists, such as family doctors and general internists, so far as seems appropriate. In some cases this may be minimal, while in other cases where patients have been ‘orphaned’ by the medical system this may be substantial. As 955
Teleological care
opposed to the present situation, in which generalists often enact and coordinate the suggestions of specialists, in teleological care the generalist plays a larger role in appraising and implementing the advice of specialists in view of the patient’s situation in life. 3 Coordination. Teleological care partners with other existing programmes, and it is this intense focus on coordinating care that sharply distinguishes teleological care from other efforts to address the issue of care in the last years. Reciprocity between teleological care and the programmes referring to it will mean that, for other programmes, referring patients to teleological care also means accepting other patients under teleological care. Importantly, however, care provided by partner programmes would continue to fall under the model of care those programmes currently provide, without an overt request that those programmes adopt entirely new initiatives in disease, symptom or dying care. This may mean more or less actual care provided by the teleological practitioners, whose role as a team is to provide a clinical, emotional and practical bridge between transitions in types of care. The great benefit to patients and existing programmes alike is that teleological care undertakes the emotional, administrative, practical complexities of helping patients receive the most appropriate care based on their values. In this way, for example, a patient with end-stage heart failure could be assisted to receive disease care from one programme, but could be helped to transition to increasing symptom care and eventually to dying care as appropriate – sometimes even back and forth between models of care and between actual programmes.
Potential The great strengths of teleological care are that it can accommodate a broader scope and a larger number of patients than can palliative care or hospice care; that it can facilitate the challenging transition for patients with chronic disease from disease care to greater symptom and dying care; that it offers generalist direction to patients during a complex period of change; and that it allows existing programmes to continue delivering the model of care to which they have evolved. With this organizational structure, and with a patient-centred focus on the ends of death, purpose and meaning, teleological care has potential to facilitate good end-oflife care in the last years of life. It returns the concept of care to its origins in addressing the totality of a patient’s needs, tying this loosely but not necessarily to the context of dying – addressing patient desires for support with the emotional, spiritual and practical needs of facing the end of life [13]. It opens space for narrative and reflection and legitimates a wider circle of care. Teleological care should be considered as a new overarching layer of organization added to the existing systems – clearly this will require investment of resources, but may also provide savings in other areas. In the end, the economic impact is unclear, but the potential benefit to patients is promising.
Conclusion Consider again the persons introduced above. Might teleological care have something to offer each one of them? Perhaps the first man will begin to receive visits at home; perhaps the woman will receive simplified specialist care, and will find opportunity to begin to consider mortality; perhaps the second man will receive 956
V. Cellarius and R. Upshur
more refined symptom control, and find ways promote a dignified future. Teleological care is not built on a specific disease as specialities are, nor is it built on certain experiences as palliative and end-of-life care are – instead it incorporates understandings of disease and experience under the imperative to cohere the deeply fractioned state of modern care in the last years. Teleological care is above all a conceptual and practical attempt to organize various existing elements of disease care, symptom care and dying care into a whole. As such, it presents a novel alternative or compliment to other ongoing efforts to provide good care for a growing population of persons in their last years of life.
References 1. Schuklenk, U., Van Delden, J. J. M., Downie, J., McLean, S. A. M., Upshur, R. & Weinstock, D. (2011) End-of-life decision-making in Canada: the report by the Royal Society of Canada Expert Panel on end-of-life decision-making. Bioethics, 25, 1–73. 2. Mangin, D., Heath, I. & Jamoulle, M. (2012) Beyond diagnosis: rising to the multimorbidity challenge. BMJ (Clinical Research Ed.), 344, e3526. 3. Carstairs, S. & MacDonald, M. L. (2011) The PRISMA Symposium 2: lessons from Beyond Europe. Reflections on the evolution of palliative care research and policy in Canada. Journal of Pain and Symptom Management, 42 (4), 501–504. 4. Brandt, H. E., Marcel, E. O. & Ribbe, M. W. (2006) Predicted survival vs. actual survival in terminally ill noncancer patients in Dutch nursing homes. Journal of Pain and Symptom Management, 32 (6), 560– 566. 5. Harrison, N., Cavers, D., Campbell, C. & Murray, S. A. (2012) Are UK primary care teams formally identifying patients for palliative care before they die? The British Journal of General Practice, 62 (598), e344–e352. 6. Lau, F., Downing, M., Tayler, C., Fassbender, K., Lesperance, M. & Barnett, J. (2013) Toward a population-based approach to end-of-life care surveillance in Canada: initial efforts and lessons. Journal of Palliative Care, 32 (6), 13–21. 7. Shipman, C., Gysels, M., White, P., et al. (2008) Improving generalist end of life care: national consultation with practitioners, commissioners, academics, and service user groups. BMJ (Clinical Research Ed.), 337, a1720. 8. Gómez-Batistea, X., Martínez-Muñoza, M., Blayb, C., Espinosaa, J., Contel, J. C. & Ledesma, A. (2012) Identifying needs and improving palliative care of chronically ill patients: a community-oriented, population-based, public-health approach. Current Opinion in Supportive and Palliative Care, 6, 371–378. 9. Thorne, S., Oglov, V., Armstrong, E.-A. & Hislop, T. G. (2007) Prognosticating futures and the human experience of hope. Palliative and Supportive Care, 5, 227–239. 10. Hawley, H. P. (2014) The bow tie model of 21st century palliative care. Journal of Pain and Symptom Management, 47 (1), e2–e5. 11. Temel, J. S., Greer, J. A., Muzikansky, A., et al. (2010) Early palliative care for patients with metastatic non-small-cell lung cancer. The New England Journal of Medicine, 363 (8), 733–742. 12. Shaw, K. L., Clifford, C., Thomas, K. & Meehan, H. (2010) Improving end-of-life care: a critical review of the gold standards framework in primary care. Palliative Medicine, 24 (3), 317–329. 13. Heyland, D. K., Cook, D. J., Rocker, G. M., Dodek, P. M., Kutsogiannis, D. J., Skrobik, Y., Jiang, X., Day, A. G. & Cohen, S. R.; Canadian Researchers at the End of Life Network (CARENET) (2010) Defining priorities for improving end-of-life care in Canada. Canadian Medical Association Journal, 182 (16), e747–e752.
© 2014 John Wiley & Sons, Ltd.
Copyright of Journal of Evaluation in Clinical Practice is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
Journal of Evaluation in Clinical Practice ISSN 1365-2753
Teleological care and the last years of life Victor Cellarius MD MA PhD1,2 and Ross Upshur MA MD MSc3,4,5,6 1
Physician, Temmy Latner Centre for Palliative Care, Mount Sinai Hospital, Toronto, Ontario, Canada Assistant Professor, Division of Palliative Care, Department of Family and Community Medicine, University of Toronto, Toronto, Ontario, Canada 3 Head, Division of Clinical Public Health, Dalla Lana School of Public Health, Toronto, Ontario, Canada 4 Medical Director, Clinical Research, Bridgepoint Health, Toronto, Ontario, Canada 5 Canada Research Chair, Primary Care Research, Toronto, Ontario, Canada 6 Professor, Department of Family and Community Medicine, University of Toronto, Toronto, Ontario, Canada 2
Keywords end-of-life care, palliative care, patient-centred care, person-centred care, primary care Correspondence Dr Victor Cellarius Temmy Latner Centre for Palliative Care, Family and Community Medicine 60 Murray Street, 4th Floor Toronto, Ontario M5T3L9 Canada E-mail: [email protected] Accepted for publication: 19 May 2014 doi:10.1111/jep.12211
Abstract The final years of life present challenges for care. In middle-/high-income countries, the percentage of people of advanced age in the population is growing, and the dying process continues to become more complex and protracted. We propose that a new understanding of care, ‘teleological care’, be considered as an important response to the contemporary challenges of the final years of life. Teleological care is a philosophy of care built around the root idea of a telos (i.e. end) in three senses: (1) the end of life as a temporal limit; (2) the ends of life as the individual’s purpose and meaning; (3) the end of life as the meaning of life as a whole. In its practice, teleological care adheres to principles of (1) fidelity of practitioner to patient; (2) generalism of practitioners; and (3) coordination of care within existing services. With this philosophy and practice, care is administered by generalist health care professionals arranging for flow between care that attempts to reverse, stop or slow the disease process when appropriate, with care to address symptoms, and with care that responds to the difficulties of dying. Teleological care involves already existing programmes in roughly their present forms, serving as an overarching layer of organization added to the existing systems. Teleological care refocuses the concept of care to the patient’s perspective with emotional, spiritual and practical support for facing the end of life, and a space for narrative and reflection within a wider circle of care.
Introduction The final years of life present challenges for care. Consider, for example, an elderly man with vascular dementia, moaning and shifting in bed as his wife struggles to prepare him for a visit to his family doctor; or a woman panting towards the hospital nursing station under the burdens of diabetes, chronic obstructive pulmonary disease (COPD), heart failure and arthritis; or a man confined to his chair in the inexorable freeze of Parkinson’s. All of these patients might be considered to be in their last years of life. It may be that they do not qualify for palliative care, they may be burdened with multiple specialist visits and they may be without a family doctor to visit them at home. How should these persons best receive care? How do we ‘know’ what constitutes best care? The fact that the final years presents challenges is true when we consider one person’s experience, and also true when we consider the impact of these years across society. In middle-/high-income countries such as Canada (upon which we focus in this article), the percentage of people of advanced age in the population is growing, and the dying process continues to become more
complex and protracted [1]. The models of care for such persons have changed over the past century, and while the advances have been great, a broad challenge has arisen that none of the models can fully address. Indeed, the charge has been made that attempts to improve patients’ ‘health status’ may sometimes detach from, override and undermine the broader goal of patient well-being [2]. It may well be time to question how we understand the meaning of care, and embark on the process of rethinking our concepts. We propose that a new understanding of care, ‘teleological care’, be considered as an important response to the contemporary challenges of the final years of life. This paper will review the current situation and introduce the concept of teleological care.
The challenge of the final year Background Most persons in middle-/high-income countries die of progressive ill health in old age. This has prompted an ongoing consideration in these countries regarding how the practices of medicine can
Journal of Evaluation in Clinical Practice 20 (2014) 953–956 © 2014 John Wiley & Sons, Ltd.
953
Teleological care
best promote well-being throughout life, especially during the last years. Using Canada as an example, we see that presently only a small percentage of persons receive specific end-of-life care in their last year. Some experts suggest that 95% of deaths could benefit from palliative care, yet perhaps at most 30% of Canadians receive access to palliative care, and even then, hospice and palliative care programmes are unevenly distributed across the country [3]. Concern about end-of-life care has been expressed recurrently in the literature over the past decade. Some of the reasons for poor end-of-life care include the fact that even if age and debility are plainly visible, accurately prognosticating death in these situations remains difficult [4]; the fact there remains resistance by medical practitioners and patients to consider death, especially in the case of chronic non-malignant diseases [5]; the fact that resources presently focused on end-of-life care are insufficient or difficult to coordinate [3]; the fact that surveillance of patient experience at end-of-life remains challenging [6]; and the fact that medical practitioners may differ profoundly in their understandings of the definition, aims and delivery of end-of-life care [7]. These are, in essence, philosophical issues about the meaning and purpose of the practice of medicine. As in other middle-/high-income countries, the number of persons dying in Canada each year will increase significantly in the coming decades, and the number of persons living with multiple, progressive chronic diseases is expected to increase dramatically in line with this current demographic transition. A recent review suggested that more than 75% of deaths in middle-/highincome countries will be from such chronic diseases [8]. In Canada, recognition of the individual, social and economic benefits of good care in the final years has been joined by the assertion from some quarters that such care is a right. Furthermore, providing care that incorporates the perspectives of the patient dealing with ‘any life-limiting prognosis’ will mean reconceiving when and how discussions about future care and dying should be undertaken [9]. Considering all of these points, the profound challenge becomes apparent. How are we best to care for the growing number of persons who should receive good care in their last years?
Responses The twentieth century saw a great expansion in the ability of biomedicine to diagnose and to treat disease, and with this ongoing expansion three broad models came to inform the care for persons in their last years of life. The models – which we will call (1) ‘disease care’; (2) ‘dying care’; and (3) ‘symptom care’ – are distinguished by their focus of care, and cut across various specialties and across approaches such as acute care, chronic care, preventative care and palliative care. The first model, which appeared with the advances in diagnosis and treatment arising in the early twentieth century, is what we will call ‘disease care’. Disease care may be provided by generalist or specialist physicians, and is defined by a focus on limiting the impact of disease by attempting to reverse, stop or slow the disease process. The second model, which appeared in the second half of the twentieth century as the ‘hospice movement’, we call ‘dying care’. Dying care is defined by an overt emphasis on the process of dying, including efforts to provide symptom relief and emotional 954
V. Cellarius and R. Upshur
and social support. In this model the patients’ death is understood, at least by the health care providers, to be imminent and unavoidable. The third model, which is best exemplified by modern palliative care, and which in its most explicit form developed from dying care (to which it remains closely related), we call ‘symptom care’. Symptom care is defined by a focus on easing suffering and optimizing function across a wider range of situations than in dying care. This care is still often, but importantly not always, given in situations of progressive, life-limiting disease. Clearly, any previous or present existing programmes of care will have adopted some aspects of each of the three models. A geriatric service, a primary care service or an internal medicine service, for example, may favour disease care, adopt symptom care to a degree and dying care when the situation warrants it. Likewise, a palliative care service may favour symptom care and dying care, but adopt disease care to the extent that this seems to be in the interests of the patient. Up to this point, the suggestions for responding to the challenge of the final year have all quite reasonably called for existing programmes to expand the care they provide. Although none of the calls have used the terminology employed in this paper (i.e. disease, symptom and dying care), the arguments implicitly do so. Existing programmes that usually favour disease care (e.g. oncology, internal medicine specialities, primary care, paediatrics) are asked to adopt more of dying and palliative care; or end-of-life programmes (e.g. hospices) and palliative care programmes are asked to adopt more of disease care (e.g. managing chronic conditions in their advanced stages). Difficulties Each of these initiatives has potential to respond favourably to the challenge of the final years, but each also struggles with difficulties. One overall approach has been to encourage end-of-life and palliative care programmes to widen their scope. End-of-life programmes (e.g. hospices and some palliative care units) by definition typically maintain a narrow focus, caring for patients with short prognoses. These programmes often have a small number of beds and practitioners available, and often adhere closely to the original focus of hospice care on mitigating the difficulties during the unambiguous period of dying. Some end-of-life programmes have broadened their focus beyond care for persons close to death and have become palliative care programmes of another sort – caring for patients earlier in their disease trajectory or for patients whose needs have more to do with symptoms than with dying (e.g. chronic pain, supportive oncological care, frailty and multiple concurrent chronic illnesses). This is the model for palliative care that is gaining traction in the United States, for example, and is the model that has been lauded for showing benefits that including better quality of life and lengthening of life [10,11]. But like end-of-life care programmes, palliative care programmes typically have a small number of practitioners and beds relative to the potential demand. These programmes are able to adopt the disease care model to a degree, but lack the capacity to provide for the large and increasing number of patients in their last years of life. Most efforts have now turned to encouraging programmes focusing (primarily) on disease care to adopt more palliative and dying care into their approach. Given the history of hospice care’s
© 2014 John Wiley & Sons, Ltd.
V. Cellarius and R. Upshur
initial focus on patients with end-stage oncological disease, oncology programmes were the first to incorporate more of the palliative and dying models. Presently, there are efforts underway to encourage programmes caring for persons with end-stage diseases such as congestive heart failure, chronic kidney disease and COPD and neurological disease to adjust their approach. There are also ongoing efforts to encourage generalist programmes (e.g. family medicine, internal medicine) to adjust similarly. A prominent example outside Canada is the United Kingdom’s ‘gold standards framework’, a nationwide effort that encourages generalists to adopt more of the palliative and dying care models into their care [12]. These efforts have made headway, but have faced difficulties in gaining widespread acceptance, holding on to initial gains and have yet to show their impact on patient outcomes [12].
Teleological care Overview Alongside the efforts mentioned above, we propose another model of care to address the challenge of the final years. Teleological care is a philosophy of care that incorporates disease, symptom and dying care as needed. But rather than attempting to change existing programmes of care as other efforts do, it involves already existing programmes in roughly their present forms. It incorporates these programmes under the larger concept of teleological care. In this way it differs from efforts to expand services, efforts to expand palliative care and primary care. In overview, teleological care is a philosophy of care built around the root idea of a telos, or end, in three senses: (1) the end of life as a temporal limit; (2) the ends of life as the individual’s purpose and meaning; (3) the end of life as the meaning of life as a whole; in its practice it adheres to principles of (1) fidelity of practitioner to patient; (2) generalism of practitioners; and (3) coordination of care within existing services. With this philosophy and practice, care is administered by generalist health care professionals able to arrange care under the three current models of care as appropriate (i.e. disease, symptom and dying care) by arranging for flow between care that attempts to reverse, stop or slow the disease process when appropriate and consistent with stated treatment goals, with care to address symptoms and with care that responds to the difficulties of dying. To achieve this broad spectrum of care, teleological programmes negotiate care for patients with other programmes – primary care providers, general internal medicine providers, specialists, palliative care providers and hospice providers. Philosophy Teleological care has its conceptual and practical roots in the telos of life, in which we distinguish three understandings. 1 Death – In a direct sense, teleological care concerns telos as the end of life, as death. It understands death to be a normal part of life, and understands that dying and death present a variety of opportunities and difficulties. In keeping with this, the patients under teleological care are those who, given their present conditions and available and acceptable treatments, are more likely than not to die in the coming years. Whether this prognosis is chosen to be one year or two, or even more, will depend on the
© 2014 John Wiley & Sons, Ltd.
Teleological care
aims and possibilities available to individual programmes or jurisdictions – what matters more is the overall understanding of care underlying teleological care. Provided that a practitioner reasonably judges a patient to likely be in his or her last years of life, the referral can be made. The actual judgment of this condition will be sometimes clearer and sometimes less so, but the appropriateness of the referral does not hinge on the accuracy of the prediction but hinges instead on the occurrence of the judgment itself. In this way, there is in teleological care an accepted likelihood that some of the patients will live longer than expected by the criteria for referral. Furthermore, the patient need not take a particular view of his or her death. They may or may not believe it to be imminent, they may or may not accept it and they may or may not wish to delay it if possible. What matters more is that a judgment has been made on the available clinical situation that this person is more likely than not to be in their last years of life. 2 Purpose – Teleological care also concerns telos as the ends or purposes of an individual’s life. It endeavours to support or deepen patients’ understanding of their situation and their possibilities. Some of this may concern clinical choices and advanced care planning, and some may involve discussion of the reason for their referral to the programme, and some of this will lie in other areas. For example, the patient may wish to reflect on the practicalities of their situation, including financial or social issues; or the patient may wish to consider meaningful aspects of their past and future; or the patient may wish to consider their relationships with family and friends. 3 Meaning – Teleological care also concerns telos as the meaning of life. It helps the patient to explore the shared meanings of society towards community and culture, and to explore existential and spiritual meanings of life, especially in the face of their own mortality. Delivery Although the foundational understanding of teleological care is built on death, purpose and meaning, there are also important practical features of this model of care. The key features that distinguish the delivery of teleological care are fidelity, generalism and coordination. Certainly, many existing programmes already embrace some or even all of these features, but what sets teleological care apart is the adherence to these features in conjunction with the foundational understandings discussed above. 1 Fidelity. Once a patient enters teleological care she or he will remain under the programme’s care unless she or he wishes to leave. The idea is that practitioners accompany the patient through the various transitions in the last years of life regardless of the patient’s outlook or situation. 2 Generalism. Teleological care revises and reinvigorates the notion of generalist care. Practitioners involved will come from various disciplines (e.g. medicine, nursing, social work, pastoral care, counselling, pharmacy) that possess a wide range of abilities, including knowledge of current disease care for chronic diseases, knowledge of specialized palliative care and a facility to engage in discussion and counselling. In consultation with the patient, teleological care assists other generalists, such as family doctors and general internists, so far as seems appropriate. In some cases this may be minimal, while in other cases where patients have been ‘orphaned’ by the medical system this may be substantial. As 955
Teleological care
opposed to the present situation, in which generalists often enact and coordinate the suggestions of specialists, in teleological care the generalist plays a larger role in appraising and implementing the advice of specialists in view of the patient’s situation in life. 3 Coordination. Teleological care partners with other existing programmes, and it is this intense focus on coordinating care that sharply distinguishes teleological care from other efforts to address the issue of care in the last years. Reciprocity between teleological care and the programmes referring to it will mean that, for other programmes, referring patients to teleological care also means accepting other patients under teleological care. Importantly, however, care provided by partner programmes would continue to fall under the model of care those programmes currently provide, without an overt request that those programmes adopt entirely new initiatives in disease, symptom or dying care. This may mean more or less actual care provided by the teleological practitioners, whose role as a team is to provide a clinical, emotional and practical bridge between transitions in types of care. The great benefit to patients and existing programmes alike is that teleological care undertakes the emotional, administrative, practical complexities of helping patients receive the most appropriate care based on their values. In this way, for example, a patient with end-stage heart failure could be assisted to receive disease care from one programme, but could be helped to transition to increasing symptom care and eventually to dying care as appropriate – sometimes even back and forth between models of care and between actual programmes.
Potential The great strengths of teleological care are that it can accommodate a broader scope and a larger number of patients than can palliative care or hospice care; that it can facilitate the challenging transition for patients with chronic disease from disease care to greater symptom and dying care; that it offers generalist direction to patients during a complex period of change; and that it allows existing programmes to continue delivering the model of care to which they have evolved. With this organizational structure, and with a patient-centred focus on the ends of death, purpose and meaning, teleological care has potential to facilitate good end-oflife care in the last years of life. It returns the concept of care to its origins in addressing the totality of a patient’s needs, tying this loosely but not necessarily to the context of dying – addressing patient desires for support with the emotional, spiritual and practical needs of facing the end of life [13]. It opens space for narrative and reflection and legitimates a wider circle of care. Teleological care should be considered as a new overarching layer of organization added to the existing systems – clearly this will require investment of resources, but may also provide savings in other areas. In the end, the economic impact is unclear, but the potential benefit to patients is promising.
Conclusion Consider again the persons introduced above. Might teleological care have something to offer each one of them? Perhaps the first man will begin to receive visits at home; perhaps the woman will receive simplified specialist care, and will find opportunity to begin to consider mortality; perhaps the second man will receive 956
V. Cellarius and R. Upshur
more refined symptom control, and find ways promote a dignified future. Teleological care is not built on a specific disease as specialities are, nor is it built on certain experiences as palliative and end-of-life care are – instead it incorporates understandings of disease and experience under the imperative to cohere the deeply fractioned state of modern care in the last years. Teleological care is above all a conceptual and practical attempt to organize various existing elements of disease care, symptom care and dying care into a whole. As such, it presents a novel alternative or compliment to other ongoing efforts to provide good care for a growing population of persons in their last years of life.
References 1. Schuklenk, U., Van Delden, J. J. M., Downie, J., McLean, S. A. M., Upshur, R. & Weinstock, D. (2011) End-of-life decision-making in Canada: the report by the Royal Society of Canada Expert Panel on end-of-life decision-making. Bioethics, 25, 1–73. 2. Mangin, D., Heath, I. & Jamoulle, M. (2012) Beyond diagnosis: rising to the multimorbidity challenge. BMJ (Clinical Research Ed.), 344, e3526. 3. Carstairs, S. & MacDonald, M. L. (2011) The PRISMA Symposium 2: lessons from Beyond Europe. Reflections on the evolution of palliative care research and policy in Canada. Journal of Pain and Symptom Management, 42 (4), 501–504. 4. Brandt, H. E., Marcel, E. O. & Ribbe, M. W. (2006) Predicted survival vs. actual survival in terminally ill noncancer patients in Dutch nursing homes. Journal of Pain and Symptom Management, 32 (6), 560– 566. 5. Harrison, N., Cavers, D., Campbell, C. & Murray, S. A. (2012) Are UK primary care teams formally identifying patients for palliative care before they die? The British Journal of General Practice, 62 (598), e344–e352. 6. Lau, F., Downing, M., Tayler, C., Fassbender, K., Lesperance, M. & Barnett, J. (2013) Toward a population-based approach to end-of-life care surveillance in Canada: initial efforts and lessons. Journal of Palliative Care, 32 (6), 13–21. 7. Shipman, C., Gysels, M., White, P., et al. (2008) Improving generalist end of life care: national consultation with practitioners, commissioners, academics, and service user groups. BMJ (Clinical Research Ed.), 337, a1720. 8. Gómez-Batistea, X., Martínez-Muñoza, M., Blayb, C., Espinosaa, J., Contel, J. C. & Ledesma, A. (2012) Identifying needs and improving palliative care of chronically ill patients: a community-oriented, population-based, public-health approach. Current Opinion in Supportive and Palliative Care, 6, 371–378. 9. Thorne, S., Oglov, V., Armstrong, E.-A. & Hislop, T. G. (2007) Prognosticating futures and the human experience of hope. Palliative and Supportive Care, 5, 227–239. 10. Hawley, H. P. (2014) The bow tie model of 21st century palliative care. Journal of Pain and Symptom Management, 47 (1), e2–e5. 11. Temel, J. S., Greer, J. A., Muzikansky, A., et al. (2010) Early palliative care for patients with metastatic non-small-cell lung cancer. The New England Journal of Medicine, 363 (8), 733–742. 12. Shaw, K. L., Clifford, C., Thomas, K. & Meehan, H. (2010) Improving end-of-life care: a critical review of the gold standards framework in primary care. Palliative Medicine, 24 (3), 317–329. 13. Heyland, D. K., Cook, D. J., Rocker, G. M., Dodek, P. M., Kutsogiannis, D. J., Skrobik, Y., Jiang, X., Day, A. G. & Cohen, S. R.; Canadian Researchers at the End of Life Network (CARENET) (2010) Defining priorities for improving end-of-life care in Canada. Canadian Medical Association Journal, 182 (16), e747–e752.
© 2014 John Wiley & Sons, Ltd.
Copyright of Journal of Evaluation in Clinical Practice is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
